FinanceMonkey Vs. Alien

Fertility Preservation and Cancer

2007-11-12T17:05:00.000-08:00

It looks like I have gone from an extremely big to an extremely small opponent as I was diagnosed with cancer over a year ago now - and my encounter with the sperm whale leading to my sinking in the middle of the Pacific was just a few months before that. Bit if I could dodge that 80-ton mammal, these microscopic cells stand no chance.

My cancer grew so attached to my reproductive tract that it decided to keep it as a souvenir. As I had not planned on being a tourist ground for cancer and menopausal at 32, I sought help to preserve my fertility. This affected me so much that she worked with top physicians in the field to make a documentary to raise public awareness of these solutions. Fertility preservation options are little known to patients and physicians alike and many patients embark on irreversible sterilizing therapies before exploring options.

You can see the short video at: http://www.youtube.com/watch?v=sFGg3yyDNYs

I now count on the frosted Mini-Mes to keep my spirits up! More info at stories.beatsarcoma.org.

Pacific Cup Blog Launched

2007-09-23T16:52:00.001-07:00

and available at this location.

Update

2007-09-05T15:55:00.000-07:00

Hi everyone - Sorry for the delay in posting an update. I am actually maintaining a private blog (much more detailed) and it took up a lot of my time. I am still in treatment and still chatting with a bunch of doctors, fighting off the nasty Alien but I have some news. I also founded a non-profit to help with sarcoma research since it currently gets less than 1% of funds available for cancer research. Still very early stages but it looks promising!

I may not be able to update this blog regularly. I am tired from the treatment which annoys me greatly, trying to do some work and setting things up with the non profit - in addition to some sailing and maintaining the private blog.

I will post an update once the non-profit is ready for prime time.

Meanwhile, if you are interested in finding out more about the Alien story, please email me and we should be able to get you an invite to the private Alien blog.

The Return of the Sarcoma

2007-06-30T12:27:00.000-07:00

Hey skywalkers,

I was just trying to find something catchy to break through the clutter of uninteresting posts, all evidence that I am getting rather bored sitting at home or in some tea lounge all day. Even work (that small task I was asked to do) kept me busy for only half a day. Pumpkin played with a toy that has a small bell all day and I am now slowly but surely turning into a shepherd.

Interesting things can happen in my neighborhood. A friend and I sat at a coffee shop. I ordered a "cafe frappe". They had a Mocha version which I was asked about but confirmed that I really wanted the regular one. The waitress brought me the supersized version (I ordered a medium) because she made a mistake and prepared a Mocha frappe. She said apologetically "you get a big one for free because I made a Mocha, so I am giving you more for your money". The logic is fabulous. This is a drink that I explicitely did NOT want, and I am getting MORE of it???

It really feels so weird. The bleeding ceased after the first surgery. The pain stopped after the second surgery. I am feeling more or less fine now (a little pain at times in the lower abdomen, very sharp, like thousands of needles all aiming at the same point at once). The first week, I was more or less asleep the whole time. The second week, I couldn't drive but I can walk ~ 1 mile/day. From this weekend onward, I can gradually increase the distance I walk and I can drive to medical appointments. So I don't feel sick at all. Yet, I am supposed to be off work because I need to limit walking/movement of my belly (no belly dancing for me right now...I know you were all dying to see that). This is so bizarre...Anyway, back at work in 1 week now, so everything should be back in order after that. Still no exercise/heavy lifting/tampon/douche, etc... for another month (apart from walking and be a tourist on my boat for a cruise) so that's a bummer. Then if I were to opt for a pregnancy, I would have to wait for another month.

If you are bored by this blog, I can take feedback. Remember that this Reality Show where everything will be documented is FOR YOU ;-) I don't want my ratings to fall just before we get into prime time.

OK, things are getting hot.

The pathology report confirms the diagnosis of some sort of malignant sarcoma. In any case, it has not changed. No one is saying that it wasn't malignant and Oops, we just removed your cervix by mistake and no one is saying "actually it is a very rare form of malignant shingles and you need a series of shots in the butt". The margins are clear around what was removed, although 1 cm shorter than what my oncologist had hoped for. Remember that for sarcomas apparently, it means little as these little aliens can send microscopic satellites around the body to look for sunnier places at the same time as they peacefully grow in one location. Still, for the "wait" strategy, it is a good thing. If she hadn't achieved clear margins, my uterus would have be sent to Pathology Heaven immediately. And it was quite deep into the tissue of the cervix, eg apparently ~ 90% of the cells of the cervix were cancer cells (that was visible on the MRI, esp, the contrast version). So I guess that the trachelectomy was a good decision.

So this means that it's my decision...We're back to square one minus the cervix.

A friend referred me to someone who counsels a lot of cancer patients. She was kind enough to call me today. The disease is definitely rare, she asked me to spell adenosarcoma because she had never heard of it before. It was GREAT to talk to someone who didn't just throw numbers at me. She offered a more human perspective :)

Here's what I have learned from our little chat:
- In rare cases, it is very normal to have everyone disagree. It is not helpful but it is expected, esp. among physicians who can be quite opinionated.
-She said that there was a big difference between "I recommend to go through a pregnancy and then do a hysterectomy" and "our main recommendation is a hysterectomy but if you are aware of the risks, you may wait and be watched". The latter means "the second option is not safe but it is reasonable".
- She thinks that the oncologists are working on answering my question: can I get pregnant now. They seem to spend a whole lot of time on this. Most physicians' gut feel would be to offer the most aggressive treatment to preserve life. However, most physicians will also want to understand the patient's goal and risk profile so it can be factored in the discussion.
- She recommended to spend a lot of time looking at other options to become a mother.
- For this type of cases, she thinks that I should go to the world experts. She recommended that I travel to a major cancer center over the next month, have them review my pathology, examine me, chat with me. She also said that I should not state my goal of carry out a pregnancy openly so as not to bias them. Finally, she recommended that I should voice my concerns such as "I am worried about having to interrupt a pregnancy if I were to start one" or "I am worried about my life if I wait before a hysterectomy" so they can try to quantify those risks for me. She also thinks that since my case is so rare, they will most likely be delighted to be given a chance to look at it.

It does indeed sound like most of the world's knowledge on adenosarcoma (which can be transported in a backpack when confined to a book format, using Font 11 Arial) is concentrated at one of those centers.

So this will be my next destination.

Another surrogate mother

2007-06-30T12:24:00.000-07:00

Hello galactic wizards,

I just talked to someone who is using a surrogate mother right now (in fact, she was about to go meet her for her 21-week doc appt).

This woman went through an agency. The agency has 12 clients using surrogate mothers.
The main deterrent? Price...

Total cost is a little North of $100,000. This includes:
- $25K for the surrogate, payable in installments throughout the pregnancy.
- legal and agency fees
- health insurance contributions for the surrogate mother (regular insurance won't cover this so she had to get a new policy established)
- medical bills for the surrogate mother
- misc. expenses (gas and mileage when she goes to doctor's appointment, etc...) managed through the agency.

Compared to this, the cost of owning a boat is negligible ;-)
The cost of IVF cycles (also expensive...between $6K to $10K) is not included. In my case, I would probably want to do at least one other cycle.

This woman got help from her family. She also looked into adoption apparently, and that was around $50K or so. Definitely a little steep...Not quite sure how I'll handle that yet, although
I am sure that there is a solution to every problem out there.

It took about 2 months for them to find a surrogate mothers because they picked the 3rd one. They saw a new one every 3 weeks. The surrogate mothers are screened (they need to have at least one child, stable relationship, etc...). You can ask them questions, they pick you and you pick them (for example, this woman wanted to know what the surrogate was planning to do with the money. The surrogate replied that they would buy a new car because their current car is getting too small for them and their son)

She also chose to spend a lot of time with the surrogate mother, going with her to doctor's appointment, meeting her regularly. She said that she felt indebted to her and she would do anything for her surrogate, so maintaining a good relationship was important to her. She knows one other person who decided not to have anything to do with the surrogate mother (everything can be done "remotely", eg through others).

Not stress-free. The surrogate was an ex-smoker and apparently was "tempted" at times...

This woman also offered to make herself available if I decided to go through this, help me select a surrogate, handle the process, etc...

How does this make me feel? Happy for her, comforted by the idea that there isn't a 10-year wait time before you can find a woman who's volunteering to lend you a uterus and maybe a little surprised at the cost? It may push things out a bit, or will probably force me to make choices (eg, house Vs baby). But hey! That's what life is all about, choices!

And if you want my 2 cents: get regular medical check-ups and screening, maintain a healthy lifestyle and diet which would include not smoking. It's a lot cheaper to be healthy!!!

2007-06-30T11:55:00.000-07:00

Sorry, catching up on a lot of stuff...

Hello Vizirs of the Cosmos,

- I am doing well, officially off the Tylenol as well!! Hurray!! I do some daily walking (a little less than a mile) and will increase this to a little over a mile/day over the weekend. I use this to run my errands that do not involve heavy lifting.
- The cats are the funniest and cutest creatures in the known universe.
- I still have a ton of flowers in the apartment and I am taking very good care of them, for both my enjoyment and the cats.
- A lot of what I am exposed to has to do with either babies or cancer which is a little hard to deal with (recommended a book about 1st year of the life of a single mom's son. Only thing is that her best friend dies of cancer at the end of the book)
- I have had people call and visit every day which is so wonderful!
- My final pathology report isn't ready yet so more waiting
- I am getting ready to graduate in Sarcomatography.

I now feel well enough to process some work e-mails, and perhaps join a few calls, eg. gradually get back into the heat of things. As I started to do this, I got a message from my manager saying that it would be best if I ignored all work-related things, including e-mails until I got back to work 100%. He said that people had my cell number if they ever needed an urgent answer from me.

?????????????????????????????????????????????????????????????????

How am I going to spend my days???

As my manager realized that he could not lure me away from e-mail, he suggested a task that would help the team a lot. It's right up my alley so I gladly accepted (for those who don't know, I love my job). It feels really good to be a little useful :) Right now, I am in a holding pattern, waiting for the pathology report and for my tissues to heal. I have no one to entertain during the day. I think a lot about motherhood/hysterectomy, etc...but I am not really making any progress. Just feels like an unhealthy obsession. Physically I am fine and my limitations are limited to walking, lifting and general exercise. I don't think it applies to typing. So this is a welcome break!

His statement yesterday sounded like a "don't worry about work for now, just worry about getting better". I really think that doing a little bit of this work that I enjoy so much will help me recover faster!

To those who have expressed concerns over my professional situation (esp. the EU folks who might think of the US as this harsh corporate environment), I wanted to reiterate that I could not have found people more supportive. My managers, colleagues, etc...have all offered to help in various ways. This emotional roller-coaster as well as medical commitments (time sink) had bad consequences on my productivity. The decision to have a baby or to undergo a hysterectomy will have consequences that will outlive my current position.

I told my managers very early on about the situation. Their support has been phenomenal. We consulted with HR and agreed to take it slowly and make temporary changes to my job when we both feel it becomes necessary. I am working with the team to make sure that I can transfer knowledge and some of my responsibilities. I have reduced the scope of my work to focus on what really matters. If it came to that, we have talked about my switching to a less demanding project, working part-time, taking a leave of absence or some vacation time, go on long-term disability leave, etc...There are many options. All my managers have assured me that it wouldn't affect my performance/career, except of course for a little time hit. My VP also said that if I needed to take a longer disability leave, she would make sure that I have an equally interesting job/project when I got back.

All in all, we are actively talking about the situation. I communicate anything that might be relevant to my employer as soon as I know about it or if the likelihood of it happening is high. I also share with them some of my concerns/feelings/emotions as they relate to work. I feel that we are dealing with this as two informed adult parties who have an interest in maintaining a good relationship, and who consider this a temporary situation that requires a little flexibility and creativity. We both agree that getting healthy is a priority (a dead product manager is no good to most Earthly organizations). I can't stress enough how I appreciate their openness, and support.

This is also a reason why I don't mind putting in work during an official medical leave.

I am unbelievably lucky.

I just slept for a couple of hours...Post-lunch nap. I guess that this is still what my body needs...My cats and I are taking turns.

I am slowly leaning toward the hysterectomy after my discussions with everyone. The main argument is the risk of having to interrupt a pregnancy to get treated. I will probably not get any new info from talking to more physicians, but it might comfort me in whatever decision I end up making.

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I have just received a very intriguing parcel! It contains...

A TEAPOT - nice, green, elegant...

Teabags, cookies and a beautiful scented candle!!! From a close friend with whom I played volleyball at University!!

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I decided to walk to the Tea Lounge this morning to do some work (my cleaning lady is coming today so it will be havoc in my apartment), and the tea there is too good :) I turned up at 9:15 only to find out that it opens at 10:00. Fortunately, there was a small coffee shop right across the road where I patiently waited. Kind of a weird hippy and artisty place,
After a few minutes, I started to feel some pain in my lower abdomen (hopefully will subside soon because I don't have any painkillers with me today!).
Just before leaving the place, I did what a lot of people do, visited the restroom...There I found on the floor, an extremely thick book entitled "The Biology Of Cancer". I looked through it, looks like it's some textbook about cancer. How random!!!

Pain is better now, hopefully will completely go away by the end of the morning. I am now sitting at the Tea Lounge, sipping a nice warm Chai :)

And some more opinions!!!

2007-06-30T11:41:00.000-07:00

From a wonderful person whom I am lucky enough to count among my friends. This is combined with some help from the ship's medical oncologist who clarified a few of the "confusing" things I had been hearing.

"My advice on how to make your decision, which is different from my opinion on the best treatment option, is to raise your thoughts to a higher level and not let them get tangled in the details. Having the mind untangle details is somewhat comforting, but it prevents it from looking at the issue holistically. Step back from the issue and try to look at it from an unattached perspective -- then ask yourself what decision seems clear. "

I agree that all this new knowledge + playing with stats is reassuring. It makes me feel that I am getting to know my "enemy". It feels that I am running in circles now though since there really isn't a good basis for stats and pathologists can't even agree on the diagnosis/grade of the tumor.

We then walked through all the possible outcomes for the two options. This friend's argument is that even if it has less than a 1% chance of occuring, I must be prepared to accept the reality of that outcome and deal with it. When I go sailing, the probability of sinking is very low but I need to be prepared for it. I like that approach a lot. It allows for human (read: personal risk profile), ethical, emotional and religious dimensions. Let's do a mix in this post (add some stats and some other stuff)

Option 1:
OK, so let's take Option 1: aggressive treatment now. (No doctors are arguing about the nature of this treatment, only about the timing of it). This would be a hysterectomy (with or without removal of the ovaries, sounds like risk of spread to the ovaries isn't easy to quantify when I ask) followed by radiation.
The little data that was available on adenosarcoma has shown over a 30% risk of relapse for patients that undergo this treatment (although it's not quite accurate because some had adjuvant therapy and some did not. I don't know how the risk is distributed over this population). I thought that this was rather high...Most often when it recurs locally, it recurs at the top of the vagina or in the ovaries. In some cases, it's in other locations. This would be consistent with the 70% survival rate though post-treatment since after relapse, the numbers that I have read were not so good. 15% of the patients still alive after one year, 5% after 2 and 0% after 5...So it sounds like relapsed adenosarcoma is the real problem and that all treatments have tried to reduce the risk of relapse as much as possible.

So if I do this and if I believe this data then I would fall in the 70% category. The studies that I have read can't agree on what correlates highly with a poorer prognosis (eg. grade does not seem to)

The worst possible outcome is that I have a child, then relapse. This risk could be mitigated by waiting before having a child as I guess that the risk of relapse goes down as time goes by (?)
I would also probably feel quite good about myself because there's probably little else that I could have done, given the world's current knowledge of this disease (read none). And as a mom, I think that I can be prepared to die and not be there to raise my child so long as I have done anything that's in my power to prevent it.

The best possible outcome is that I don't relapse and have a child (somehow...). This is a reality that I am quite willing to accept. It will be tainted with regret though as I would never know whether a pregnancy would have been possible. This may be better than guilt.

The intermediate outcome #1 is that I don't relapse but can't have a child. I guess that if I try everything I can, then it's a reality that I will have to accept and that's what's in store for me. It's also a problem that many people that don't have cancer at all face every day. At least, I will have the opportunity to try.

The intermediate outcome #2 is that I relapse and don't have a child but then, it sounds like the risk of this happening would be minimized by my decision to go with Option 1. So anything else, I'd better work on accepting it and do God's will. To my knowledge which seems to be as current as the world's knowledge on this topic, there is nothing in my lifestyle that I would have had to alter to reduce the risk of developing adenosarcoma.

So Option 1 lead to outcomes I can deal with, even though it does deviate from an ideal family planning route and will not be something I can easily accept (when I was first told about a hysterectomy, it felt like I had just lost a child)

Option 2:
This means wait for a couple of months, work on perfecting insemination techniques, get pregnant ASAP, try to carry the baby to viability then go to Option 1. Total wait time could range anywhere between 12 to 18 months (including the fact that I did go through an IVF cycle as an insurance policy, have not had a hysterectomy yet). Risk of local recurrence after trachelectomy is high so there is a high risk of tiny little cancer cells left behind. Those cells can be managed locally through resection but what I learned today is that the wait would increase the chances of one of those cells taking a ride in a vein and travel to the lungs to make babies, hence would increase the risk of non-local recurrence. This is probably what doctors meant by "risk of non local recurrence is LOW, in their opinion, but NOT zero".

Best Outcome: I can get pregnant in no time, deliver a baby and go through Option 1. I would feel pretty good about this of course, this is the main advantage of Option 2 and it would mean that it was successful. I would have a stressful pregnancy most likely and would not get to enjoy my child full time for a few months after birth since I would have to go through treatment.
Now, the likelihood of this outcome is rather low (20% maybe). We do have quite a bit of data on this so we can certainly estimate it. I read on the Internet that success rates of IVF insemination hover around 30%, it will be lower for me as there is a risk that my cervix won't heal perfectly and make it harder for either sperm or embryos to get through. I have some 70% chances to deliver a healthy baby. And I also found out that the average time for a couple who can conceive successfully from the time they start trying is about 6 months. Since I need to achieve the same feat in less than 2 months, my chances of success are less than 50%. So let's say between 20 to 40% overall from today. Let's note that the risk of local recurrence is over 50%. She has also given an opinion about the % increase in risk (combined) associated with waiting. She could not give a strong basis for this estimate but she did say 5% and it's the only number I have. Let's assume an initial risk of 1% of non local recurrence (that would be low by stats standards, in fact, noise given most error margins...) and let's assume that this 5% applies to both local and non local recurrence risk. Then the total risk of non local recurrence with waiting would be 6%. For someone with a child, knowing that survival chance will be reduced by 6% sounds high to me. My risk profile changes with a child, I will be willing to take fewer risks because I will feel responsible toward this child.

Worst outcome (there's no point in going through the intermediate here because if I can't accept the worst outcome, then this option should no longer be viable). I get pregnant but the local recurrence happens fairly early on and my doctors feel that they should interrupt the pregnancy. I would feel awful for three reasons:
a) I would feel very guilty because I would have known that there was an increased risk to this pregnancy due to this cancer diagnosis and yet, I would have gone ahead. So part of this outcome would be because of my decision. There is also a risk of this pregnancy being "interrupted" through a miscarriage because I don't have a cervix. However, this was a risk associated with the trachelectomy in the first place. It would exist even for women who have a more predictable cervical cancer.
b) I would feel worse about losing a child mid-pregnancy than not attempting a pregnancy.
c) My overall survival rate would be lower for certain (how much is unsure but if the local recurrence is noticeable, it means that it was active for a little while and could have sent more cells elsewhere). This is scenario that was referred to as "Oh Shit, I should have taken the most conservative route".

Out of these three, b ranks first in how bad I would feel and the combination of a+b is a real problem. I would have actively contributed to an abortion...I don't care so much about c in this case because it concerns only me, not me + a child. I frankly am not sure if I am willing to accept this. I would have to think some more about this but I think that losing a child to cancer (indirectly) mid-pregnancy sounds like the worst possible thing I could do from a human, ethical, religious (I am catholic) and emotional perspective.

How likely is this outcome? I don't know because the 50% that I was quoted was within a 5 year window. However, if there is a local recurrence, it will most likely happen soon (within 2 years). So it sounds like the risk is front-loaded and decreases over time. What's unclear is the impact on pregnancy. What's clear is that it will increase the risk of non local recurrence (if it can be seen on a scan, it will probably be quite active already) so I would be in a bit of a dilemna as I may have to choose between my life and my baby's.

So my decision might rest on a+b. I could assume a minimum risk of 0.001%, probably higher than the likelihood of getting hit by a whale.

Sorry for the length of this post and potential typos (I have not proof-read this post). I will think about this some more.

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Chat with the ship's medical officer.

- high risk of local recurrence is equivalent to high risk of microscopic cancer cells left behind
- risk of non local recurrence increases with time if microscopic cancer cells are still present
- it is possible to manage the disease LOCALLY through resection during or right after a pregnancy but this won't apply to non local instances of the disease. This sounds like a reasonable approach if the tumor is considered low grade (slow growing) and if the goal is organ preservation. It is not the standard course of treatment which is defined to increase the likelihood of survival.
- This kind of disease seems to favor travelling through the blood stream. So the next likely organ on the list would be lungs. This would be very difficult to treat.
- Chemotherapy would be a big question mark in terms of how helpful it would be
- This cancer is hard to detect and if it has spread to other parts of the body might not be detected for a little while, thus increasing the chance of it spreading to yet another part of the body. So assuming that it has spread to the lungs and can be dealt with, it might next show up somewhere else, and so on and so forth. Not quite what I want to spend the rest of my life dealing with
- Even for known cancers; historical data does not explain everything as each individual and each cancer will have a unique biology. In particular, in my case, since there is no case history, the range of possibilities is big
- Melanoma and sarcoma are really very different diseases and the melanoma comparison is probably not relevant
- The low grade factor plays a role in the short-term decision as it would affect the time after which the tumor needs to really be resected. It is not clear how it influences the non local recurrence risk since this type of cancer seems to be keeping some of these new cells locally but could also send some remotely at all stages of development.
- Sarcomas do not typically metastase through the lymphatic system but through the blood stream. However, removing the lymph nodes with the hysterectomy (at least a sample) would be fine. It increases the risk of lymphoedema (eg. swelling of the legs) combined with radiations.
- It is hard to quantify the risk of spread to the ovaries

Hope that I am not forgetting anything. I didn't take notes...

- If the final pathology report looks bad, then Option 2 disappears
- Else, I can go back to the a+b discussion from the previous post

Off Percocet

2007-06-30T11:37:00.000-07:00

First off, it's the weekend. Not that it matters to me but it matters to a lot of people whom I deeply care about.

Next, I will try not to take any Percocet today. I took one last night to help me sleep but I will try to switch to Tylenol. The side effect of these little pain pills (constipation) is really not helping with my rectal fissure. I now have to choose between short but acute pain caused by the fissure and continuous but very bearable discomfort caused by the surgery. I choose to alleviate the former. Hopefully, this will also mean that I am finally awake (I slept some of yesterday and it took me about 45 minutes to read 3 pages of my book).
As I wrote in an email to a friend yesterday, I now feel like I am experiencing painful periods (I have never had painful periods before). Before, it felt like I was permanently in the final stages of labor (I have never been in labor).

It gets even better!!! I'll hang out at my favorite Tea Lounge for the afternoon. I will take my "Walk" from there. I know that I am supposed to be home bound for most of the time but I figured that the seats there are as comfortable as the ones in my appartment. And I am getting positively sick of my appartment.

I must not forget to say that Pumpkin is curled up on my lap, purring really loudly. Hershel is at my feet seemingly asleep.

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I am now officially off this thing which
- made my body feel like it was midnight at all times
- made my grammar in any language look similarly bad
- gave me a memory span equal to that of a goldfish
- prevented me from drinking wine

That's my BIG news for today.

More medical opinions

2007-06-30T11:33:00.000-07:00

I asked a friend for an honest medical opinion. This friend also happens to crew on my boat so she is absolutely trustworthy :)

Notes:
1) The "third-hand' transcript was the one you have read
2) The "colleague" is a GYN oncologist
3) This friend has not seen the pathology reports. All the information that she has to work with is the information that you all have access to.

"I do not know you that well, or how much having a child genetically yours has played into your life plan, but I personally would not be considering, or recommending to you to try to carry a pregnancy. My recommendation would be hysterectomy - as it offers the best chance of completely removing your cancer at the earliest stage possible. Removing all disease before there has been any chance for spread offers you the best chance of cure. The "third-hand" transcript below most closely mirrors what my thoughts on your situation have been. I have been reluctant to state my view in such a bold manner as I am not your physician, I have not reviewed all of your information personally and certainly have not seen a case just like yours.

When I spoke with my colleague, he stated his recommendation would be hysterectomy, with discussion re: pros/cons of oophorectomy. He would be very reluctant to offer a more limited surgery given risk of leaving residual cancer behind, which could spread during a pregnancy, and the fact that getting pregnant, much less carrying to viability, would be low."

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Well, we are not very advanced in the day yet but I am already bored, so I will post something on this blog.

You are getting the first hint.

This blog is USEFUL to me, at least, it gives me something to do when I am not sleeping and not picking up guys, I mean, walking around the block.
I also find this blog extremely therapeutic. It helps me process and express my thoughts and feelings and none of it feels so big since it seems to be distributed over all of you (thanks I hear you say...) and doesn't stay with me. This is why your support, positive thoughts and prayers mean so much to me and why I always enjoy e-mails, comments on the blog, even the silliest thing! Having cancer on a desert island with no Internet access must be really tough.
I consider this little adventure a journey (I know, I am not the first/only one to say that) - I guess that life is - so let me rephrase this it's a special train, the Harry Potter one. It looks daunting at first, but it could be a great ride after all. There must be a reason for it. I don't know what your religious beliefs are and I don't mean to single out anyone with this post. Mine are telling me that God has picked this particular route to teach me something. My learning style is to talk this through, bounce off ideas and iterate on them (after I do a ton of personal research so I feel like I know what I am talking about). This blog is a great professor!
This blog helps me in one other way. I am a very secret person when it comes to personal emotions. So secret that it is sometimes hard to communicate those even to myself. First I started music/writing poetry and short stories, or travel journals, etc...They were all ways I chose to speak. Writing offers a nice safety net.

For this blog to work and help me, I must be totally open and not hide anything about what I might learn, even if it is laughable (I had never heard of a rectal fissure before!!!) or sounds ridiculous (I can't use tampons for another 5 weeks and post-op bleeding have to be dealt with with pads...)

The strangest thing is that I feel super powerful and super vulnerable at the same time...
I don't mean from a disease perspective. I feel vulnerable when I open up that way. You can all pick up anything you want, critique anything you like and realize how clueless or scared ("terrified at the idea of a hysterectomy pre-pregnancy") I am. I feel also powerful in that I have words for all of this, an army of wingless angels called friends (if you have wings, that's a scoop, I want to see them!!), and an infinite number of prayers and thoughts accompanying me. Friends who have gone on similar journeys, friends and family who are travelling with me on this one. Powerful because I don't have to hide from this, I don't have to pretend.

OK, pressure's on now. Better not make this boring...

You - through this blog, thoughts and prayers - are saving me!

more fun things!

2007-06-30T11:30:00.000-07:00

Is Uncertainty a synonym of cancer? I wonder sometimes...

When pathology labs were fighting over the little sample that was available for diagnosis and while I was waiting to hear back from them about whether a) it was benign, b) it was malignant and c) what type of cancer it was so we could deal with it, I thought that the hardest thing to deal with was uncertainty.

I was also under the impression that once a+b+c would be figured out, there would be a plan and I'd just be cruising along. But not really. No data fits my case, most oncologists have never seen a disease quite like that and past surgery, treatment options are experimental. Option 2 and Option 1 both contain an unquantifiable amount of risk. So there is still uncertainty.

Every new bit of information comes with its load of decisions, stats and imbroglio of medical terms.

Glad that there's a bit of time in-between decisions...It definitely helps.

******************

Re: Low Potential, Low Risk and Me.

Someone who is quite astute with numbers did point out to me that Low could be Very Likely in my case, given my recent history, and should not be discarded in my decision making. Even though the events described below are probably quite independent, they prove one thing: rare can happen, and moreover, it has happened to me.

a) Not very many people get hit by a whale mid-ocean
b) Not very many people get this type of cancer in the first place
c) Not very many people do not like chocolate
d) Not very many people in the US do not own a TV
e) Not very many people lose their teapot to an angry stove burner

Someone who is even more astute with numbers did point out a correllary to this Law of Small Numbers.
"You said that you felt invincible because of the oddities like the whale that you came through just fine on, while I want to argue that independent probabilities do still apply to you."

It is true that this can work both ways - and I could feel both fortunate (to have survived the sinkage) and unfortunate (to have sunk). Or lucky that they have found an undetectable cancer (other than through biopsies) early and unlucky that they have found a cancer.

If there are any more Field Medals in the audience, feel free to add theorems, counter-theories and other unbelievably long formulas in the comment area.

***************************

I just went out for my Walk Around The Block. Walking around the block is a fairly dangerous activity, so my advice to you is to not attempt it without first checking with your family doctor.
If you get a green light from a competent physician, preferrably with a medical degree, then you may wish to proceed cautiously, and follow these steps. If you get a drawing that looks like a light bulb (green or not) and is supposed to represent your uterus, I suggest you switch to another doctor.

As a preparation, choose a flashy looking modern sports outfit that says "I can climb Everest in flip flops". "I Love Big Boobs", or "Am I Hot or Not" are not in fashion anymore.

First, you need to stretch. That's because most people look quite sexy when they do that. I recommend placing yourself at a street corner that gets quite a bit of traffic to increase your odds of picking someone up. It's always nice to have some company during a little stroll. Choose someone who seems to walk quite slowly. It will make you look good.

Next, make sure that you have forgotten your wallet with the money necessary to sustain you during this long trip so you need to walk back up two flights of stairs and get some extra exercise. It also allows you to check one last time your hairdo.

You will then start walking. To reduce the risk of falling, you should keep one foot on the ground while throwing the other one into the air and look as if you know where you're going. Do not try big steps. Research proves that small steps are more elegant and increase your chances of getting invited for a coffee (particularly handy if you decided not to walk back up to get your wallet).

This can be strenuous exercise. Stopping in front of a well-decorated shop and admire the various exceptional offers from time to time will certainly allow your heart to maintain a safe pace. You should save this organ for the rush of Love At First Sight, a side activity, often practiced pre and post-stretching. If you feel tired, you may be carrying too much weight for your level of fitness. This can also provide an excellent occasion to offload some of the contents of your wallet.

After you have walked half a block, find the most comfortable chair outside a coffee shop and take a break. Do not overdo it! This is a really important step because coffee is so good. You'd be stupid to miss out on it just because someone said you should do a loop around the block. The block will not go away but your coffee might get cold. If you haven't gone back for your wallet, offer to do the dishes. It will offer complementary exercise for your upper body and is excellent for hygiene. Don't stay too long back there though, you are less likely to attract The Person Of Your Life. It's hard to see that you have polished your trainers when they're out of the light.

The next and last real difficulty in this exercise is to cross the street. This is best done at a 90 degree angle from the curb as you would not want to walk 0.1 mile in the wrong direction. You do not need to wait until the street is clear of traffic. Just pick a driver that looks cute, look him or her in the eyes as a smile beams out on your face and reduce your pace as you cross in front of that car. Hopefully, you'll get a ride back to your place.

Finally, you will be back in front of your house, appartment, boat or office. Remember to look quite exhausted but make sure you haven't walked so fast as to sweat extensively. The smell can be quite repulsive. Open the door, walk to the phone and call the person who offered you that coffee and nearly ran you over as you were crossing the street. That's it! You're done!

Was this the wrong surgery?

2007-06-30T11:12:00.000-07:00

To oncologist #2

"Below is a 3rd-hand transcript of a conversation that a friend of mine had with an oncologist. I hope that I am not distorting the message. The bottom line was that, in this physician's opinion, waiting before a hysterectomy conveyed a significant risk.

A hysterectomy is a big decision (I have just had a trachelectomy) and I have a strong desire to go through a pregnancy. On the other hand, the strength of the reaction below is puzzling to me. "
Here's the transcript
"Removing the cervix = a good start but not enough . It may be possible to preserve the ovaries. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion. He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery now, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
"Sarcoma" (the type did not matter as much as sarcoma characteristics), scarcity of data about the disease, difficulty of diagnosis seem to be enough information for him to recommend this course of action. He did state that without full data he was on a less certain footing.
He added that if I wanted to sacrifice some of that chance of survival to have a baby, it would be my prerogative."

***********************

To oncologist #3

"As a follow up to our discussion today, I wanted to give you more detail about the other opinions I have been hearing, as an FYI.

Here's the latest e-mail that I have received from a friend who is a medical oncologist and who consulted with a GYN oncologist.
The information I have shared with her are the tumor board recommendations, the diagnosis of a lMullerian adenosarcoma as well as the alternate diagnosis proposed by the Stanford pathology department. I have also given her the history (dates + procedures performed)

The other oncologists (most of whom I do not know as they were introduced to me by friends), including a radiation oncologist and an oncologist who is currently treating a patient with relapsed adenosarcoma, after a hysterectomy, also have received the same information. I have mentioned to them my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy and be done with it, and a summary of our discussion. Their reaction is very similar to the one listed below.

These people have all urged me emphatically to consider a more aggressive treatment. To give you an example, one of them called me early yesterday to dissuade me from doing a trachelectomy. All of them seem personally concerned that my life is being jeopardized by waiting.

Let's wait until the final pathology becomes available and I would love to have a referral into Sloan-Kettering. I am struggling to understand the risks inherent to my current decision.

"[Follows a quoted email stating that delaying surgery would convey a significant risk]"

**************************
And the counsellor of the REI clinic
"I have heard conflicting recommendations re: best treatment options for my disease, all from very competent physicians. When I mentioned to these oncologists my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy/adjuvant therapy, they have all emphatically urged me NOT to delay radical/aggressive surgery any longer. Most of them seem personally concerned that my life is being jeopardized by waiting, given the difficult of diagnosis, the rarity of the disease and associated scarcity of data and its incurable nature past the first attempt at a cure. Some oncologists are also recommending radiation and chemotherapy. I will most likely have radiation.

I am terrified at the idea of a hysterectomy now (as opposed to post pregnancy). I have just had a trachelectomy done. It occurs to me that I have spent a lot of time justifying the recommendations that fit my desire to go through a pregnancy and not dedicated enough time to contemplate the alternative.

I know that the clinic has dealt with other cancer patients and I was wondering if I could benefit from their experience. I would be curious to hear how they have lived through a hysterectomy/potential loss of fertility during their reproductive years). Specifically, I am interested in understanding how this experience has affected their perceived self-worth, both as a woman and as a mother.

I am reluctant to join a support group. I was wondering if you would accept reaching out to these patients and sharing my contact details with them, asking if they would be open to having this conversation with me, or if there would be anyone else I could reach out to. I hope that my request is not unethical or inappropriate but if I am mistaken, please accept my apologies. "

The doctor replied to me:
"I hope your recovery from the surgery has gone well.
I do not have a lot of patients who have been in a similar situation, but I will try to contact a few patients who have had hysterectomies to see if they are willing to talk."

disclaimer: I am still drowsy from the Percocet so don't mind my English...

Just got a call from oncologist #2
- "We believe that there is a high risk of local recurrence (read uterus/top of the vagina) but that this does not put your life in jeopardy because it can be treated with resection and radiation. So if you did go through a pregnancy and we saw this recurrence, then we would both feel good because you would have tried all you could (except that you might lose a baby half way through...) and I will still feel confident that I can save your life and remove the disease before it spreads any further."

[Note from my medical self]
So the risk of local recurence *could* be quantified if we believe the little data that's available, even though none of it fits my case. It's called "significant" and oscillates between 30 to 50%. Oncologist #3 had estimated this risk to be well over 50% in my case because all of the cervix was already gone.

"- What is worrying is the risk of lumps and mets way outside of that area. This risk is not zero with sarcoma but our position is that it is small enough to let you consider Option 2. If your final pathology reports indicates that there is anything suspicious close the cervix in the uterus, then Option 2 should disappear."
(but my pathology report will focus on the cervix! not the uterus. Read, this risk sounds really low and we don't believe that it should affect your decision making)

[Note from my eminent medical self again]
This is where things get blurry. The risk of NON LOCAL RECURRENCE IS NOT ZERO but she can't give me a number!! It is small at this stage, because the cancer was found so early, hence their recommendation. Note that oncologists said that clear margins meant NOTHING for sarcomas because of the hopping habit, so I am really confused as to why all of the sudden those margins are so important to everyone. Is it because it is still an early stage?

When I mentioned that one of the oncologists believed that there were already seeds in the uterus (beside the polyp that was removed), she said that there was no way of knowing at this time, and that if it was the case, then leaving the uterus in would lead to metastatic disease over the course of 1+ year. However, she felt that I have read up a lot about this type of cancer and the associated risk and that she feels that it is reasonable for me to attempt Option 2 and that risk to my life does exist as the disease will most likely recur or progress but is deemed manageable. She said that I would have to be watched very regularly and quick action would have to be taken the minute anything starts to show its ugly face.

When I mentioned people's concerns about leaving cancer cells behind in the uterus and the fact that the disease is so rare that it is hard to predict how it will behave, oncologist #2 agreed and said that the only condition she's comfortable with letting me go down the path of Option 2 is if I agree to be watched super regularly, accept that my life can be saved only if I go through aggressive treatment WHEN it recurs. Under these conditions and based on the information that she has, she believes that she can manage the disease in that length of time to give me a chance at a pregnancy.

She also said: "the problem of course is that all the people you are talking to can be right. The more extreme or the more moderate opinions could all be right. No one will be able to tell you for sure what will happen. That's why I believe that you are doing the right thing, giving this due consideration, gathering data and understanding your decision."

She left me on a very nice note, saying that she was glad that I was recovering so well from the trachelectomy. That, she said was something that definitely could NOT be delayed any longer. I really appreciate her getting back to me so quickly.

So bottom line, if I understand correctly:
- Risk of local recurrence of the disease is high (let's take it for granted) but with regular watch, it can be managed. If it recurs too early, it will kill my pregnancy but it won't kill me (since a hysterectomy/adjuvant therapy should take care of it then)
- Risk of metastatic disease is low but not zero, principally because the cancer is at early stage

I think that I now understand their position. It seems extremely consistent and logical. I also better understand why they are making this MY decision.

- This is a big deal but it's early and we have dealt with the most urgent issues
- If the margins are clear, we are confident that if there are seeds in the uterus (or not as it will probably recur anyway), then the recurrence will be local and can be dealt with through resection (eg surgery) and radiation (and/or chemo) which means that my life is not in jeopardy
- risk of metastatic disease at this stage in their opinion is low but not quantifiable, thus more aggressive surgery AT THIS TIME may not be necessary if my desire is to go through a pregnancy.
- I will need to have a hysterectomy at some point. This will be my only chance for a cure.
- This disease is rare and it will be hard for anyone to tell me how it will behave. There is indeed no data that fits my case and it is hard to treat once it spreads beyond the uterus/cervix.

OK, I will chew a bit more on that...

************************

I just received flowers from my team at work! It's such a huge bouquet that the delivery man was panting when he got to my place (top floor). I just sent a Thank You email around. I am so touched! I really wonder if I deserve all this support. In the grand scheme of things, I suffer from a cancer that was found early and things don't seem bad at all. I am terrified at the idea of having to undergo a hysterectomy at age 32 but it won't stop the world from spinning.

"Hello everyone!

Thank you for all your support and kind words! I am doing well and these beautiful flowers will no doubt speed up my recovery! So far the only casualty of this whole operation is my beloved teapot (a "volunteer nurse" tried a very original recipe which didn't work out so well). You will find below the obituary, edited for a local news page.

My cats think that I have finally understood the meaning of life as I join them in daily naps, induced by narcotic pain killers :)

See you all soon!
ps: no cat or elephant was hurt in the making of this story

[the obituary you are all familiar with]

***********************

Someone pointed out to me that she wasn't sure that my reason to delay a hysterectomy (whether or not there was any risk in that) held much water.

It sounded to her that I was depicting a very romantic pregnancy, a time where mother and child will bond, the first kick, the first ultrasound, the first meeting...breastfeeding, etc...
She then rather plainly laid out in front of me what a pregnancy without a cervix might look like, esp. under a little time pressure.

- Work with a fertility doctor to get pregnant
- Ensure that no twins grow in there (not sure if the circlage would hold this), at least, no triplets...
- Worry every day about miscarriage and losing your child
- Restrain your activities to minimize the risk described above
- Stay bored in bed for 19 to 20 weeks
- Assuming 32 week point is reached, schedule a C-section and have surgery
- Assuming baby is viable, probably look at him/her from a distance for 6 weeks as he/she keeps growing in an incubator

Of course, to this mix, we should add:
- Meet doctors on a regular basis to make sure that cancer isn't growing too fast/coming back too early

Her next question was: is this what you really want?

Trachelectomy is a fairly new procedure that was created specifically for women with very early stages of cervical cancer that wanted to preserve the ability to carry a child. Not many GYN oncologists can perform it and to qualify women must have expressed a very strong desire to carry out a pregnancy. It is a high risk pregnancy, but it is a pregnancy. Many other women have this procedure done and enjoy a pregnancy. Seems to me that there might be something stronger in this?

Nathan was also worried that if all the odds were multiplied, it's not worth it.
- Getting pregnant within 3-6 months (assuming clear scan and OK final pathology report) - % chances?
- Cervixless uterus has healed well enough to allow for either insemination or normal sperm travel (apparently in some cases, it heals in bizarre ways and makes this virtually impossible without laparoscopic surgery) - no idea % ?
- Cancer does not develop too much too fast so pregnancy does not have to be interrupted (no idea % but I am told it's LOW, whatever that means...)
- Pregnancy carried to viability (70% of the cases?)

Well, if there is no additional risk (eg, like the oncologists say, they can manage a local recurrence if it happens during that time), I would argue that even a 10% chance of success would be worthwhile.

Granted, it would be a little more stressful and less glamorous than a regular pregnancy. Point taken and assimilating this in my thought process.

Recovery

2007-06-30T11:10:00.000-07:00

I called the REI Clinic to schedule a follow up appointment. I followed the menu options. Option #1 was "if you are a new patient" choice, Option #2 was for non-new patients willing to speak with a coordinator which is the option I selected.

I got a voicemail back telling that I had picked the wrong option. I should have selected Option #1 and tell the new patient coordinator that I am not a new patient.

But of course! Why did I not think of that before?

************************

The Obituary of the Elephant Tea Pot

9/9/1992-3/20/2007

Farewell dear Elephant Teapot, companion of so many sleepless nights.

After sailing the Seven Seas and traveling five continents, Elephant Teapot succumb to a sad, unexpected, and molten end following a short but courageous battle with the right front burner.

Elephant teapot is survived by 2 elegant english mugs, Frog and Toad, and 2 understated but refined teaspoons. Also, the family pet cookie, Le Petit Ecolier.

Elephant teapot was 15 years old.

The burial ceremony took place at 6:30pm, in trash bin #2.

In lieu of flowers, the family requests a new teapot and 2 teabags.

*******************

OK. Let's look back at the past few days. I had no idea that domestic life could be so exciting. My fridge was just about to explode before an emergency Fondue rescue. A volunteer friend ran away with my insurance card. My landlord found cat's hair in the stairwell and has sent a quarantine order until he can clean things up. I have lost a teapot in a dramatic kitchen fire. My cleaning lady just broke the vase that used to contain the sunflowers. There's water all over the place. My left-hand is all bruised because of Anesthesiologist The Great and I can't get this band-aid glue off my arm. Apparently it makes me look so trashy that I just got an IM from a friend who's hoping that the garbage truck will leave me alone. I have become extremely skilled at stacking up in elegant domino fashion over 6 packs of "Le Petit Ecolier".

I have just received a call from the insurance company asking me about the procedure as they are processing my disability claim. It's such a rare procedure that I had to describe what it was. When I started a very scientific description of how the top of the vagina could be stitched to the bottom of the uterus, the lady on the phone said "All right, you can stop right there, I am going to approve your claim. I got the paperwork from your doctor's office. In fact if you wanted to take more time off, it sounds like a good idea"

I am now at serious risk of acute boredom since I sleep only one hour out of five, a rare disease in my family...

Surgery

2007-06-04T17:27:00.001-07:00

Hello interstellar blizzard,

I was in agony in the recovery room (apparently they kept me there for 4 hours or so), holding my tummy, crying and constantly screaming that my pain levels were anywhere between 8 and 10 :) I don't have a very clear memory of that room, I can't remember faces there either as I think that they sedated me for most of the time I spent there. Then I was asleep/waking up and asking for more pain medication/asleep for most of the night :) Feeling much better (just groggy) and the pain medications are keeping me comfortable now!

Now that I am a little bit more awake, I will post a little something on this blog. On Thursday morning, my courageous chauffeur brave enough to fight early morning traffic picks me up and drives me to the hospital. I register at the Surgery Center. There, I am asked if there is a particular religious affiliation I would like to state. I am taken aback by the question. The person at the counter replies kindly that "if we need to call a priest for you, it's better that we call the right now".

Charming!

I am then led into the Pre-Op area where they ask you a ton of the same questions everyone has been asking you for the past few months. You dress up in a lovely gown, probably some 18th century fashion style, and you are left alone for an hour until the doctors decide it's time to come say hi. I use this time very wisely, getting educated in classic Spanish literature as you can see.

My oncologist drops by and reminds me that after this procedure, if I wanted to get pregnant, I will have to have a C-section to delivery. I thank her for this useful albeit late clarification and wish her well. She also says that my anesthesiologist is "Great".
The cute and great (and married with two kids) anesthesiologist finally comes by to start an IV. He is Swiss so we talk about his good old European days. He decides to start the IV on my left hand. He first numbs me (that's the uncomfortable part as the liquid that's used for that is quite painful), then just insert the tube. He misses the vein or did something wrong and he has to take everything out after messing about with the tube for a few minutes, thus creating a nice bruise. Meanwhile, he keeps asking me if I could feel something. I reply that I can feel a tube moving around in my hand, that it is rather painful and is making me feel nauseous. He thinks that it's strange since he numbed the area. He does it again on my right hand and everything goes smoothly this time around. I am so glad that he's a great physician. I wonder how many times a bad one would have had to try this.

I ask him how anesthesia worked. His response: "we really don't know. We know it does work but we don't know the mechanisms by which it works. But don't worry, we've done this plenty of times." Another reassuring tidbit of info from Dr. Anesthesiologist The Great. And if he's done it as often as he has inserted IV into people's hands, I am not sure that it is such a good thing.

Then because of my last "post-egg retrieval" PTSD experience, he wanted to give me something to knock me out and make me feel really relaxed. I thought that I could refuse but apparently not. He says: "you will feel things but you will really not care. I want to see how you're doing on it before I put you to sleep".

1 min later, I was totally out since I do not remember leaving the pre-op area, entering the OR, leaving the OR.

The next thing I remember is actually quite fuzzy. I remember feeling A LOT of pain in my tummy, holding it with my two hands and screaming as loud as I could. I have a very confused idea of where I am, I don't remember hearing the usual "your surgery's over", or seeing my doctor. I couldn't describe the recovery room to you. At times I hear "what's your pain level on a scale from 0 to 10". I start with a conservative 8 but whatever they gave me for this pain level didn't work. Next time I am asked the question, I shout back "25"!!! I have no notion of time, I don't remember how long I stayed in the recovery room. I just think that the surgery lasted for about 2 to 3 hours. I remember people holding me down, trying to keep me somewhat flat and motionless. I remember some orders flying over my head "4g of morphine" or "let's keep her on oxygen to help her relax". Then after what seemed to be a long struggle, in and out of consciousness and still experiencing some extreme pain in my abdomen, I vaguely hear "we're going to take you to your room now", feel the velcro portion of whatever they use to monitor your vital signs during surgery removed. Then nothing. Next I hear is "try to slide down more to the left. It's a softer bed, you'll be more comfortable". Then nothing. Then a lot of pain, rolling over to the side holding my tummy, nurses coming in and out to take vitals, adding morphine on a regular schedule and giving me valium every 8 hours and Percocet (2 tablets at a time) every 3 or 4 hours. I wake up for dinner, which was not vegetarian (they should have asked me about dietary restriction at the patient registration desk!), with no appetite and feeling quite nauseous, have a nurse take a picture and then go back to bed...

I spend the night with pain levels around 5 to 7, woken up every few hours...

************************

Oncologist #2 came by earlier today and we had a friendly chat.

- The good news is that the oncologist achieved clear margins after she removed the cervix (according to one of our past conversations, it doesn't mean anything but hey, it's still good news) and she even had a bit left to put the circlage around in a very elegant fashion.
- This also confirms that the cervix was full of cancer since there were no clear margins within it.
- The final pathology will become available sometime next week. We will do a special report on it. Stay tuned.
- She indicated that I could not douche, have intercourse, use tampons, take a bath or leave my house for the next three weeks, and no exercise for the next 1-2 months depending on how I feel. Wine seems to be OK, so we're cool.
- She then went on to say that I should wait for 2-3 months before becoming pregnant if I chose to do so. She thinks that it is better not to waste time waiting around. She will want to do an MRI at the end of this period and make sure it shows no visible sign of cancer. She also said that I should limit myself to a short period of time within which to attempt a pregnancy. If I am not successful within that time window, then I should abandon the idea of carrying a child and move on to Option 1.
- I did bring up the unanimous voice of most other oncologists I have talked to about the situation, urging me to go straight to Option 1. I also gave her some background as to which information they were basing their recommendation on.
- She said that her recommendation was based on the Stanford pathology report which states a different form of Sarcoma, much less aggressive in her opinion. Had she believed that this was a more typical sarcoma, she would not even have allowed me to go through an IVF cycle.
So she still feels confident that the remaining cancer if there is any, will grow slowly enough that it will be manageable after a pregnancy, through resection. She still recommends a hysterectomy afterwards and would support my desire to undergo adjuvant radiotherapy at that time.
- She said that she wanted me to feel comfortable with my decision and she would support me in whatever this decision is so long as she did not believe it entailed unreasonable risk. To help me better understand the risk of Option 2, she offered a referral at Sloan Kettering Memorial Cancer Center.
- I did mention that because this was so rare thus poorly understood, it would make sense to be conservative as the cancer could display unpredictable and potentially dangerous behaviors. She agreed that it was rare.

Let's wait for the final pathology report now.

**********************

I had a pretty decent night's sleep, waking up every 4 hours or so only for vital signs check ups. I think that I was a little tired and glad that I could rest. One shot of morphine prior to the night and then regular pain killers (2 tablets) every four hours + valium certainly helped accelerate my trip to Dreamland.
I have two beautiful sets of flowers in the room and they remind me of how fortunate I am to get so much support from so many wonderful friends! I will take them home with me!

Waking up this morning was a little rough as I experienced some pretty serious cramping, much worse than yesterday afternoon/evening but not as bad as Thursday post surgery! Anything that would take me away from a fetal position this morning would send me screaming...These painkillers do wonders though, so I am pretty confident that it'll be a comfy day overall! I am off the morphine for now, still on antibiotics through IV. I took two tablets of pain killers, 1 valium and my regular morning medication. The painkillers are already causing a serious bout of constipation which is not good at all for the fissure but I still prefer this than being in constant pain. Hopefully the cramping will get a little better. The nurse said that they will probably send me home with a good number of pain killer tablets as it is not uncommon to experience bad cramping for over a week after this procedure. I will probably have some antibiotics for another 10 days to prevent infection.

I have decided to dress up as soon as I can and sit in the chair as opposed to this bed which I am starting to get sick of. I am looking forward to a day of reading by the window and with the sun shining through, it will feel like I am outside. I am trying to drink as much fluid as I can to give my body as much energy catalysts as it might need to recover quickly. The 3-4 hour sleep at a time last night certainly helped!

The nurses were pleased with the fact that I took a little walk around the ward yesterday. I will try this again today. Apparently, it really helps with the healing. I can't walk fast/jump because the vagina is now stitched up to the bottom of the uterus and any serious effort might get this to break loose, causing pain and hemorrhages, none of which I am too keen on.

I was blogging this morning and one of the nurses was very curious so I did a little tutorial on how to use blogger, showed some of the pictures on there and said that this was a free service. Hopefully, we'll have a new blog fan by the end of my stay!

Another resident working with my oncologist came by this morning to check up on me. She did a quick exam, indicated that it was quite red/bloody which was normal but that I seem to be doing great, and much better than expected. My blood pressure is back to low levels and other than feeling very drowsy from the valium/pain killers I feel great!! She did explain that if I wanted to attempt a pregnancy, it will be a very difficult one, that I would have to be followed very closely (assuming it even gets started), probably stay in bed for 20 weeks and not expect to delivery after the 32 week mark. She also said that there can be complications with the circlage (the stitch that's permanently closing my uterus now) as it can get infected. This is a very rare and usually noticed because of pain in my lower abdomen and some bleeding. There is a standard procedure done vaginally to remove/replace it so they said that I shouldn't worry about that. Just be aware, monitor it and notify a doctor as soon as anything out of the ordinary were to happen.

*************************

The nurse came by to remove the IV...

I have a prescription to fill out today for more Percocet and colace (stool softener which I am already taking for the rectal fissure) to help with constipation. I will probably have to take painkillers every 4 hours for the next 5 to 10 days depending on how things go. Significant cramping is normal after this procedure.

Go home instructions say nothing in the vagina for 6 weeks but I guess that the latest is the one I want to follow.

Now, the reason for hospitalization and initial diagnosis is even more puzzling to me. It now says
Cervical AdenoCARCINOMA (not sarcoma) and Atypical Spindle Cell Malignant Tumor of the cervix.

Now, the worrying bit is that if some think it's sarcoma, other carcinoma, it could be both (mixed mullerian tumor) which would be really bad. Also, it sounds like they more or less agree that it is a very young tumor (and that I am so unbelievably lucky that they found it so early) which could explain why it hasn't been so aggressive yet. And maybe it wasn't malignant or just turning malignant around December/January timeframe.

Oh well, next steps make sense. Glad that someone at Sloan Kettering will look at this case. No one is arguing that it is not cancer and that I won't need a hysterectomy. It's the timing of it that's the crux of the matter.

Anyway, I am done with the Valium (just too the last one) which they gave me for PTSD.

************************

Actually, this diagnosis states BOTH carcinoma and sarcoma. Here's what it says

Discharge Diagnosis (post-op pathology to ensure clear margins): Uterine/cervix adenocarcinoma and malignant spindle cell tumor of the cervix (which is a sarcoma)

Principal Diagnosis: Same
Secondary Diagnosis: Mild Asthma

Reason for Hospitalization: uterine/cervical adenocarcinoma and trachelectomy for malignant spindle cell of the cervix.

Significant findings:
- PTSD: given valium post-op
- Regular diet post-op, started to eat on Post-Op Day #1 evening
- Vaginal Pack in until Post-Op Day #1
- Extreme pain post-op (given morphine, oxygen)
- Fever post-op: 39.3, given IV antibiotics, discharge temperature: 36.3 (morning)

Condition of patient at Discharge: stable
Home stay Medication: Percocet, Colace, hot pad
Physical Activity: nothing in the vagina for 6 weeks (no douche, no tampon, no intercourse), only mild walking at home in Post-Op week, no bath for 2 weeks Post-Op, slow walking around outside for < 1 mile/day Post-Op week 2, OK to attend medical appointments in Post-Op week 3. Require 24hr presence for Post-Op week 1 to watch out for infection and heavy bleeding. No heavy lifting for 4 weeks Post-Op, no exercise for 6 weeks Post-Op, mild exercise on week 7 and week 8 Post-Op. Resume normal activities Week 9 Post-Op.
Post-Op Follow-up visit on week 3 Post-Op

Rehabilitation Potential: Good. (thank God!)

****************************

Really nice to be back home. I come home and find dinner and Amy ready for me. I sleep all night (minus a few interruptions for pain killers) wake up and find Nathan and breakfast. I sleep all morning, get up and find Othman and lunch. I sleep all afternoon, get up and find Kim and dinner. I have dinner and find Celia with chocolates and a nice movie (Super Size Me...do not watch prior to dinner...). I go to bed, wake up and Celia's ready for breakfast. I go to sleep, wake up and Sarah is ready for lunch. I go to sleep, wake up and Nathan is ready with appetizers and wine, I am resting up and Nathan and Lynn are cooking a nice cheese fondue...This is what I call LIFE!

Getting Ready For The Hospital

2007-05-29T14:49:00.000-07:00

Two people (my therapist and a friend) have suggested another theory, not the control freak one. This also got me thinking.

If I am to pick a name for this new theory, I think that "Denial" would fit quite well.

Here are pieces of evidence scattered around the place that seem to support this theory.
- I seem to be wanting to justify the fact that the magnitude of the problem is small
- I seem to be putting off decisions, and hoping that they are made for me (eg, trachelectomy without clear margins would shut down Option 2)
- I seem to desperately identify reasons why Option 2 is not risky (why would doctors be willing to pursue a course that entailed significant danger)
- I push back any "definitive" treatment to the last minute (Oncologists telling me that my cervix had to go now and my asking if it would be possible to wait through a pregnancy. We did not continue down that path after they replied that it would be suicidal. Or my choosing the later surgery date for the trachelectomy on the emotional grounds of keeping my cervix a bit longer - Hey, I care about my cervix!!)
- The fact that I am making frequent appeals to authority (various articles and studies I keep looking at) could mean that I just want to defer to others when it comes to decisions
- I am making constant requests for input, advice and support - and if I were a control-freak, I would display a solid/self-confident facade

These people noticed that I seem to be trying to take the minimum action possible (I feel that I have been quote proactive...) which would suggest denial, avoidance and self-deception more than control-freak. I guess that this is something else that I will ponder over. It feels strange to deny a reality by telling everyone about it...

On another note, I have been referred to a neurologist to investigate some headaches that I have been having for a little while and which don't seem to be linked to any medication

Before I head out to the hospital, I have to:
- Get some boat stuff ready so that the crew can keep going and get ready for the next event
- Do some ironing which I didn't finish last night. Better have some bed linen ready for my "guests"
- Go through my mail (medical bills for the most part...)
- Do some grocery shopping that I don't have an empty fridge when people turn up. Would be really bad for the reputation of the French
- Call the hospital to find out about the exact time of the surgery and call my "chauffeur" to let her know
- Feed the cats a nice pile of wet food to celebrate their 3-day emancipation
- Prepare 10 pieces of paper with numbers from 0 to 10 written on them so I can display the pain level evidently on the bed. Will save me from having to answer their questions all the time.

Thank you for all the good thoughts, prayers and support that you have been sending me! I feel so spoiled! I will take all of this with me to the hospital!

I was asked about entertainment options by my "home helpers"

"- I don't have TV but I have a computer/video projector and DVDs + a Netflix subscription. Feel free to bring your favorite movie if you like Tom Cruise.
- I have a ton of CDs and an iPod. Feel free to bring CDs/iPod/iPhone if you believe that my taste is a bit odd...
- I have a pack of cards and a few games, including juggling equipment...Feel free to bring your own if you actually want to win
- The cats are professional entertainers. Feel free to bring a mouse or a dog as designated volunteers
- I have books, magazines and comics (well, not very many) but feel free to bring a copy of The New Yorker as I don't have the latest issue
- I will have drinks (esp. wine) but feel free to bring any of the most current substances
- I have a piano if you are so inclined but feel free to bring a set of drums if the neighbors are annoying to you
- I have a phone if you'd like to chat with someone else after you realize that it's impossible to have a serious conversation with me

If you are still bored after all of the above, we can come up with random indispensable tasks such as measuring the perimeter of my living-room with teaspoons."

Cats have food and water. I have some clothes on. Ready to go.
And frankly this "you need to have someone with you for 24hr for a week after you get home" sounds like cheap outsourcing to me. If I need 24hr care, shouldn't I be in the hospital? The only requirement for these home nursing people is to be able to make a phone call. I am sure that we can find hospital staff to do that.

Talk to you whenever I get an Internet connection going again. God bless.

Dilemna...

2007-05-23T20:45:00.000-07:00

Interesting Powerpoint on Sarcomas.

If you don't have time to read all hundred of slides :) You could read slides 6, 102 and 103.
Bottom line:
Sarcomas are rare tumors of the uterus
Adenosarcoma is the rarest type of uterine sarcomas
It seems to be lower grade than carcinosarcoma (eg won't spread as fast which is probably because the carcinosarcoma must have some of the "carcinoma" feature, eg one tumor in one site and spread fast from there)

And a much simpler powerpoint (pretty clear and nicely laid out, with pictures!!)
Although a bit dated

General note for all types of uterine sarcomas:
Limited data
Rapidly growing (doubling time is 4 weeks)
tend to be increasing

"

Specifically for adenosarcomas:
"- both malignant stromal and benign epithelial components
- a significantly increased occurence of this tumor (Seidman et al, 1999)
- present as polypoid masses"

"Because of their rarity, uterine sarcomas are not suitable for screening."

"Surgery is the only curative therapy for uterine sarcomas (2003)"
(with or without adjuvant therapy)

"five year survivals (2001) across all types of uterine sarcomas
Surgery Alone (46%)
Surgery and Radiotherapy (62%)
Surgery and Chemotherapy (43%)
Radiation Alone (8%)"

Surgery + Chemo + Radiation seems to be working better for other types of tumor.
Author notes that there isn't enough sample to really use these numbers (esp across different types, grades, etc...)

"Three-year local recurrent rates
- No adjuvant treatment: 62%
- Whole pelvis external beam radiation therapy: 31%
- Chemotherapy alone: 71%"

But people don't agree. Massachusset General thinks that adjuvant therapy has no impact on recurrence rate, other studies showed that cure rate was similar for those treated with surgery alone or followed by radiation, regardless of the stage of the disease.

"Recurrent Disease:
- Most relapses occur in the pelvis, followed by lung and abdomen
- Currently no standard therapy for patients with recurrent disease"

Only for uterine sarcomas (post-aggressive treatment):
"The 5-year survival rate was 33% for LMS, 38% for uterine MMMT, 57% for ESS, 69% for adenosarcoma and 30% for ovarian MMMT."

http://www.diva-portal.org/liu/abstract.xsql?dbid=4990

But from 1999...I am told that for adenosarcoma, it probably holds since I am told that there was no research, no progress and virtually no additional data between 1974 (year of discovery of adenosarcoma) and now...

And an article about an adenosarcoma survivor

http://www.wweek.com/editorial/3046/5515/

In this case it started in her abdomen, but looks like it's the same type.

and highlights below:

"June: During a follow-up exam, her gynecologist finds a hard mass. A CT scan shows a rare aggressive cancer, called adenosarcoma, in her abdomen spreading to her lungs. She begins chemotherapy in mid-June. Doctors discover her esophagus is bleeding (attributed, in part, to heavy use of anti-inflammatory drugs to combat back pain) and her kidneys are failing (from the chemo)."

"
Now you didn't go through chemo with the breast cancer, just radiation.

With the breast--right. Because the cancer hadn't burst out. But what I have now is a sarcoma, which is very, very different, because it's very aggressive, very invasive. It can spread very easily. And when they discovered it, they thought they took it all out, but then they found out that it had actually grown.

JS: And this is a pretty rare form of cancer, right?

Yeah. You go on the Web, well, there's hardly anything on it. In books, they don't even discuss it. There's maybe 12 cases in the country. There are a couple of clinical trials--very, very small ones. And the prognosis is God-awful. Chemotherapy doesn't help. Radiation doesn't help.

You say the prognosis is awful. How awful?

Some people live two years. Some people die before the two-year period. So it's really not terribly good. The oncologist asked, "What's your goal?" I said my goal is to finish my term. I said to her, 'You keep me alive until Dec. 31."

Brilliant!

Had a really nice weekend. Most of Saturday was spent doing housework and various sailing-related shopping. Ironing, laundry, cleaning up cat mess, mail/bills, reading, etc...I find this routine very soothing. At other times, it would probably annoy me and I would want to expedite it as quickly as possible. Now it's a solid, repetitive set of activities that just looks like normality...Life as usual! I also went out for a run. I hadn't run in a long time (last surgery + IVF cycle kept me off exercise for a little while) so I went out for only 30 minutes but up three hills :) Very sore legs the day after :) but I am definitely going back tonight. This is one of the things that I miss most! (not the sore legs, the exercise!)

Sunday was a double-handed practice on the boat. Well, it was supposed to be a race but we lost the gas cap for the engine and couldn't beat the ebb to go to the start line. It was a lot of fun. Much more active than with a full crew since two people have to do the job of five but so cool! I managed to do a quadruple wrap around three different lines (forestay, topping lift and pole cables) on my second spinnaker gybe. No one got hurt and nothing got broken :) When I am on the boat, I have to pay attention to really short term items, whatever is happening at that time so it takes my mind off any other problems! I find it very relaxing...even though it is physically and mentally demanding! At work, I am constantly tempted to check out some new articles, visit some sarcoma-related message boards, follow a link that some friend might send...So I can't concentrate on much else than sarcoma...

The other problem with work is that I really can't do as much as I used to, and even focusing on top top level priorities does not seem to be enough. On the one hand, it is useful to meet people and I really enjoy doing my job. On the other hand, it is frustrating because I can't really get excited about a project which competes in my mind with other worries. And I see all these cool developments without realistically being a part of them.

***********************

OK...I wanted to continue a dialogue here. I am wondering if there's anyone else who thinks like me or if I am hearing things that no one else can hear. I will still go ahead with the trachelectomy, there really seems to be no downside in doing this and it is the most urgent thing that needs to happen.

It really seems to me that this isn't such a big deal given that it was found early and that the most aggressive tumor has already been taken out. Otherwise I guess that I don't understand why doctors would even think about option #2.
It sounds like all doctors agree that ultimately, I will need a hysterectomy. There also seems to be some sort of consensus around recommendations, in that option #2 may be a viable option, and will allow me to go through a pregnancy.
When challenged with a more aggressive treatment view, Oncologist #2 replied "I am quite willing to be more aggressive but it may not be necessary at this time." It sounds to me as if she was worried that I would do something definitive that is not warranted (yet). She also changed her opinion from "hysterectomy ASAP and probably radiation" to Option #2 after she discussed my case at tumor board.

What am I missing?
Any other oncologist you know who would have a different opinion?
What is your opinion? Am I being over-optimistic?
I have shared all the information I have gathered and gave as accurate a transcript of my conversations with doctors as my memory allows me to.

Here are some pros and cons that I have picked up through research/chats with oncologists.
Let me know if I am missing anything.

Cons
- Sarcomas are tricky to treat because they spread without doctors noticing.
- It's a rare disease and there is no case history so treatment is experimental
- Chemotherapy/radiation is not proven to work (because there isn't enough data to find out what works)
- there is no standard therapy for recurrent disease (eg, officially recurrent adenosarcoma is incurable)
- Mine is listed as "atypical" sarcoma. Not all pathology labs agree on the diagnosis and type of cancer
- Seems that risk cannot be quantified
- Final staging diagnosis/prognosis can only be established after biopsy of the uterus (and removal of the uterus)

Pros
- Out of all the uterine sarcomas I have read about, adenosarcomas have the fairest prognosis. (LMS has a poor prognosis because it starts deeper in the uterine tissues and is closer to the extra-uterine region, and it spreads faster to that area. MMMT are really bad because they have both carcinoma and sarcoma features. ESS high grade spread so fast that chemo can't keep up with it (and human bodies need time to recover from each chemo cycle). Granted, there is little data (some 12 people over 20 years, or some 3 people in Scandinavia) and I also sometimes bump across an article that talks about how aggressive the disease is.
If it was that aggressive, I don't understand why doctors would support the "wait" option
- All doctors I spoke to entertain option #2 (trachelectomy now, pregnancy, then back to option 1 of hysterectomy with maybe adjuvant treatment) with close monitoring so they can manage the disease
- Most sarcomas start as low grade (eg low mitotic count, hehe, this means that the growth rate or number of new cells is lower than for high grade tumors. Low grade tumors have a mitotic count that is already erratic, eg, they fall in the malignant categories because this growth rate is higher than what it should be, but it is not as aggressive as it could be. The grade increases with the size of the tumor as it is an exponential growth curve) so don't grow as fast as for example carcinoma in early stages (apart from some even more abnormal ones)
- Most aggressive part is removed - the cervix where many other cancer cells have been confirmed will be removed on Thursday
- Scans have shown no other visible growth in the uterus/ovaries after polypectomy and main tumor removal.
- If after the removal of the main tumor, this was such an aggressive cancer, I don't think that even the IVF cycle would have been considered.
- Because it is so difficult to detect, a lot of people find out about it only in more advances stages (it could still be a stage I but an already bigger tumor, hence a more aggressive sarcoma). So the dire stats could well apply to these people but not to my case.
- If the margins are not clear after the trachelectomy, there will be no more Option #2
- I did not come up with option 2 in the first place; Oncologist #1 brought it up first as an option. If he had said, hysterectomy and no discussion, then I would have accepted it. So Option 2 is a physician's suggestion!

Here's a friend'ss opinion, substantiated by arguments, which he has agreed to share on this blog.

When I forwarded some positive stats (fair prognosis) from a recent article (2007)
"The numbers are "tentative" because of the large number of relevant factors compared to the sample size. They are not "true" or "untrue".
"This excerpt is clearly taken out of context. They say that their study examines THREE cases. Based on that, you can't call distant metastasis very rare. So either you've taken something out of context or they're stating invalid conclusions. I'm not saying that you've deliberately pulled out a selective quote, but I assume that this is an article abstract or something."
(article available at:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17292949&query_hl=1&itool=pubmed_docsum)

When I say that I think that this whole thing is "no biggies"
"Your last sentence is one of a few lately that I am certain ALL of the doctors you have spoken with would disagree with you about. They have used words like "reasonable" which take your own preferences (and their own lack of certainty as to what is going to happen) into account. There's a reason that there would be NO doubt as to the appropriate treatment if you were 50, or even 35 with 3 kids and no desire for more.
You are considering a very serious gamble, and no one knows the odds.
Remember the phrases like "patient understands the risks"? They may not know exactly how high the risks are, but they are NOT saying that the situation is "no big deal".
[...]
"Your doctors are still arguing about exactly which disease it is-doesn't that scare you?"

Debating whether or not, it has spread to the uterus (or started there which I found hard to believe)
"A polyp starts bleeding in your uterus. It is cut out. Some labs identify it as cancerous.
A few months later, you have a definite diagnosis of cancer in your cervix. The type is open to a bit of debate, but the most likely candidate is a cancer which in known medicine has always arisen first in the uterus." (documented as having started in the cervix in only 2% of the uterine adenosarcoma cases...given that there are some 12 cases overall, it's not much :))

On my arguing that there is time because growth rate seems to be pretty low
"Timing is linked to growth rate and metastasis, but we don't know which clock we're syncronized to. I also don't know whether the new seeds start out the least malignant level again or whether they are more dangerous. The very low probability of survival if the cancer recurs even once sounds to me as if the seeds are quite dangerous to miss in the first surgery."

Describing option 2 Vs option 1:
"they want your uterus out ASAP, and are negotiating on whether it gets used once first."
"It's not the growth that scares me. It's the hopping/metastasis, and the fact that it likely already has done so. If they didn't think it was spread around yet, then why would they be negotiating only timing and not whether a hysteresctomy was necessary at all? To beat the recurrence, it sounds like the only way to win is to cut one step ahead of the tumor."

And his last comment on the subject of my positive filtering:
"I'm not saying that option 1 makes the situation "no big deal" from a risk point of view either.
From what I've seen, I believe that there's significnt danger either way, and that option 2 is considerably more dangerous than option 1."

Another friend made a very interesting remark in her e-mail to me. She is also a cancer survivor so this may be something that she's experienced.

She says that she can understand a portion of my agony, and that my desire to have a baby is linked to the standard "human" reasons (birthing experience, genetic perpetuation, biological need, etc...). However, she wonders if by deciding to have a baby, despite all the health issues, I am not trying to feel/exert control over the situation.

She believes that cancer is all about loss of control. Cells behave abnormally. Our body cannot dictate the pace at which they multiply, our body cannot kill them (or more exactly, cancer cells do not commit suicide like well-disciplined cells). Our body is not in control. We are not in control physically. By making decision and by feeling in control of those decisions, we may regain a sense of mastery over the disease, even if it is an illusion.
This friend recommends to surrender to this reality, somehow trust that whatever happens happens for a good reason and believe that I will be made stronger through this experience.

I will ponder over this.

I am still struggling because Option 2 was a physician's suggestion so it appears to be OK to me, as if it was a reality I could accept. In a way, I think that I want to go through the trachelectomy to see if the decision will be made for me. If the margins are not clear, Option 2 disappears and there is no more struggle. If the margins are not clear - which may mean absolutely nothing in the case of a sarcoma, then I will challenge again this approach.

Another chat with the East Coast Oncologist - here are notes from that conversation (third-hand notes so hopefully not too distorted)

Oncologists #2 doesn't agree with the other labs on the cancer type. has come up with an alternate diagnosis.
Here's what this oncologist has to say about them.
peripheral nerve sheath: without a lot more data, it seems unlikely as such a tumor is pure sarcoma. Adeno means that it starts in the glands (endometrium, colon, prostate, lung, etc...). Peripheral nerve sheath tumor would be starting in supporting tissue (mesenchymal) and not be expected to demonstrate adeno characteristics.
spindle cell tumor = this is also sarcoma so same recommendations as with adenosarcoma should hold.

In short, both of these diagnosis are more sarcoma-like than the adenosarcoma. In the adenosarcoma, it's the sarcoma part that's evil. The adeno portion is the benign portion. This oncologist doesn't believe that classification is as important as the fact that there are sarcoma features present. This is what makes it mean! Adenosarcoma is typically hard to diagnose because it is heterogenous/a mix of benign and malignant and has this hopping habit, hence creates perfectly healthy areas. So if pathologists look at an ambiguous sample, they might find different diagnoses and recommended treatments.
If there's any questions about the pathology, best pathology referral agency for someone your age (military age) is the Armed Forces Institute of Pathology (AFIP). They have an absolutely
incredible reference file on people late teens to early 40's. Little doubt in his mind that they're the best in the world. So I could send some new tumor tissue sample to them.

About the "Big Deal" question
Everyone will agree that "this isn't good". Some might be pessimistic, some more optimistic but everyone should agree that it is serious.
He still maintains that in his opinion, the best chance of survival is aggressive surgery. The more variations on the sarcoma theme he hears, the more convinced he is of the aggressive surgery.

About "Why would doctors recommend an unsafe treatment?"
He thinks that doctors can be scared of making the conservative (safe) recommendation and having an angry patient later. When situation is less clear, the doctor is less likely to really come down solidly on one side.
He can't say that six weeks is an incremental risk but he thinks that six months certainly is.

In his case, he prefers to give an initial diagnosis and options when the patient is accompanied by a relative/friend/social worker/etc, because the patient never hears it all. The bigger the group the better. He feels that it is hard for both patient and doctor to be neutral as doctors are influenced by patient's desires which detract them from being objective.
He believes that I am having a substantial influence on my doctors' recommendations. From where he stands (granted far away), he doesn't think there's a whole lot of objectivity going on here.

Also, in his opinion, doctors have signalled to me that they disapprove.

About the trachelectomy approach
Removing the cervix = a good start but not enough (especially after he saw the recommendations and various diagnosis from the tumor boards). It may be possible to preserve the ovaries and physicians should try to do that. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion (eg, hysterectomy would not be questioned).
He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
He added that if I wanted to sacrifice some of that chance to have a baby that I might not be around for, that's my prerogative. I should know that a serious risk to my life is involved. It sounds like no one can say what kind of deal, but "no big deal" is definitely not applicable.
Unfortunately, this is a statistics game where there's no way to plot me as a specific point on the graph because of the lack of history. To give me an idea of this "unquantifiable risk", he used another cancer for which there is a lot of data available. With a melanoma (most deadly cancer type), a wait of 2 years would double the chances of being dead (which probably don't start very low in the first place). Sarcoma is worse than most other types of cancer so he's not very optimistic about the number. Adeno would give wiggle room, but sarcoma does not.

When both features (adeno and sarcoma) can be seen, it probably is a relatively primitive cell that turned malignant. Apparently (and there - this is Nat talking - I don't think that I understand the following sentence...If it were in Chinese, it might be easier) Mullerian duct is primitive, undifferentiated tissue that develops into the genital tract, which is why we see the adenosarcoma characteristic.

His Bottom Line:
1) I should never go to one of these appointments alone. There should ALWAYS be a second set of ears.
2) Any kind of stalling is a mistake.

My Next Steps
So, I will still go through the trachelectomy because I believe that there is no downside, potentially upside (negative margins so no more struggle) or more information as more sample.

More info about sarcomas

2007-05-16T09:54:00.000-07:00

http://www.curesarcoma.org/aboutSarcoma.htm
http://www.curesarcoma.org/treatment.htm

Also found on a medical site about all uterus tumors:
"Adenosarcoma is a rare biphasic tumour which may occur at any age. It is a low-grade neoplasm, with a high potential for recurrence and metastasis. It is charaterized by benign epithelial and saromatous mesenchymal components." - there can actually be low grade and high grade tumors, not sure what neopaslam is...This site also says that the high cure rate for cervical/uterine cancers (even the most aggressive ones) is mainly due to the fact that most can be detected via screening, hence at very early stages. This does not hold true for sarcomas.

And why studies and data means very little...Also between 1982 and 1996, there has been some progress in treatment. So as Dr. Powell said "no data fits your case"...which means that doctors don't really know how this tumor will behave.

"Oncol Rep 1998 Jul-Aug;5(4):939-44 Abstract quote

The records of 41 patients diagnosed with adenosarcoma of the female genital tract between 1982 and 1996 were reviewed.

The median age at diagnosis is 51 years (range, 14-84). The most common symptom is vaginal bleeding (71%). Clinical signs at presentation include pelvic mass (37%), uterine polyps (29%), and enlarged uterus (22%). In 71% of patients, the tumor originates from the uterus. Other sites include ovary (15%), pelvis (12%), cervix (2%). [blah blah] Surgery is the mainstay of treatment, but platin-based chemotherapy given upfront in inoperable patient has definite efficacy. An overall response rate of 92.5% was observed after primary therapy (surgery with or without radiotherapy, and/or chemotherapy), with a median survival of 48 months (range, 1-174). Thirty-eight percent of patients had recurrent disease. The median time to recurrence is 12 months (range, 5-132). Although 60% of patients with recurrence achieved a complete remission after treatment, only 1 (8%) is alive without disease, and 3 (22%), with disease at the time of this analysis.

In our series, histologic sarcomatous overgrowth is a predictor of poor prognosis (p<0.03),> Adenosarcoma is a tumor with a fair prognosis. Most tumor can be cured with surgery, but recurrence carries a bad prognosis."

and

"Int J Gynecol Pathol 1995 Jul;14(3):223-9 Abstract quote

The clinical and pathologic features of 12 cervical adenosarcomas from the files of the Armed Forces Institute of Pathology are described.

[some blah blah]

This study demonstrates a favorable prognosis for patients with cervical adenosarcoma. Similar to patients with uterine adenosarcoma, prognosis is mostly affected by the presence of deep myometrial invasion."

Pre-Op and Colon Cancer Patient

2007-05-13T16:19:00.000-07:00

Hello Fuzzy Logic robots,

I talked recently with a colon cancer survivor. When she got diagnosed, she already had a little boy and she couldn't bear the idea of being taken away from her son. She sought many opinions, travelled to LA to meet specialists, pushed her case through various tumor boards.

Her main question was "what is the treatment that will give me the best chances of survival". This is what she ended up choosing. I don't know the details of the treatment but since I saw her yesterday, it was probably a good choice. She now has a beautiful boy, a rewarding job and what seems to be an extremely loving family. I think that she is wonderful.
OK. She has a dog. Nobody's perfect.

She had a few pieces of advice for me:
- the pain killers apparently cause constipation (that's bad news with a fissure...I am on my second round of these suppositories...one month was clearly not enough). My family doctor prescribed 2 more refills (total of 4 months of treatment) and if this doesn't do the trick, will consider surgery. There are two reasons for that. a) it's extremely painful and b) we don't want any rectal bleeding that is not caused by cancer to last for too long since women with uterine sarcomas are more likely to develop colon cancer, any early signs need to be easy to pick up on!
- do everything you can to treat the cancer early, this is when you have the best shot at a cure
- get everything that could remotely be cancerous out of your body ASAP
- cancer can be deceiving. Not feeling sick or not having any symptoms doesn't mean that it's not there, doing its thing and slowly invading you. A lot of people don't know they have cancer until it is diagnosed (often at a very late stage when it is not suspected).
- you have this wildcat type of cancer and it sounds like no one knows how it is going to behave so you shouldn't take any risks.
- Chemotherapy/radiation may not be proven solutions for your type of cancer because of lack of data and knowledge, but it probably won't hurt if you do it after your surgery (in my case, they wanted to try to do gene profiling to help them figure out what might work). I would try anything that has the slightest chance of preventing you from relapsing.
- No point in having a baby if it is to leave him/her alone after a few months

And we will probably have one more thing in common...Sounds like a yearly colonoscopy will be required.

This was my first in-person chat with a cancer survivor, and a very unexpected confidence. I feel extremely honored to be trusted with this. I admire her openness. It acted as a powerful incentive for me to share just about anything, even things I may have repressed for a long time. I am surprised at how easy it was to listen to her and talk about this. Somehow, nothing could get in the way of our communication. I felt very strongly drawn to her (I so desperately wanted to hug her!), very close - almost as if we were thinking the same thoughts, or feeling the same thing at the same time. It was a very powerful experience. I feel so grateful now!!

There are two main differences though. I don't have a beautiful boy right now and I would very much like to have one, one day (it will be just fine if it is a beautiful girl). And this cancer doesn't hold the same reality for me as it does for her, probably because I don't feel sick anymore (now that the main tumor was removed, my symptoms have gone away. The cervix still looks red, inflamed and hard and bleeds upon touch during GYN exams but thankfully, it is not part of my daily protocol...) Maybe after the next surgery will it start to feel like something I should worry about. So I couldn't grasp what her fear must have been like because I am not experiencing anything like this right now. Now, it could also be because after the little whale episode, I feel quite invicible.

I was sitting in front of the Cafe at the Cancer Center. Dr. Westphal just walked into this cafe. She must also prefer this food to the hospital cafeteria. Give it another couple of months and I'll greet everyone by name at this place. She came by to say hi and asked how I was doing. She's my hero :)

I had a scheduled appointment with the anesthesiologist the other day at 11AM at the hospital. I checked in 10 minutes earlier and then waited for an hour before I could be seen. After 10 minutes, I wondered where my usual personal assistant was because I wanted a drink but no one turned up.
Fortunately I had brought a book with me. Don Quijote de la Mancha, about 1,000 pages of old-style Spanish. Enough to put anyone to sleep so very appropriate in the pre-op
anesthesia prep area. Around noon, someone finally figured out how to pronounce my name and I got called in.

Lindsey was the nurse I first spoke to.
- Hi, my name is Lindsey and we are going to talk about your upcoming surgery. You're down in our computer for...
- Wow, that's very cool. I had never been in a computer before.
- Pardon me?
- Never mind

- OK, so you are down for a trachelectomy. And, Oooo, when did you get diagnosed with that!
- last year, why?
- That's a pretty rare one. The anesthesiologist has looked at your case history and doesn't believe that you need a prep talk with him. It's important to know about the PTSD diagnosis because this will help determine what drug to give you but this can be dealt with on the day of the surgery. However, if you have any specific questions, I'd be happy to have you talk to the doctor.
- Do you offer ice-chips?
- Pardon me?
- Never mind

- It looks like you are healthy apart from this tiny issue (I can't believe it, it's so random!) and you have talked to a lot of doctors recently. So we'll just do the blood test and the Chest X-ray which your surgeon has ordered and send you home. First let me go over the details of your stay with us next week.
Your oncologist has reserved two nights and three days in our facilities, and has booked the main operating room for 3 hours. You will need 1 to 2 hours in our post-surgery recovery room to wake up from the anesthesia after that and then you'll be taken to a semi-private room.
- what size bed?
- Pardon me?
- Never mind

You may be able to go home earlier but you should plan on spending the whole time in the hospital. Your current surgery time is 12:50pm, so you need to be at the hospital at 10:50am. However, this can change at the last minute, so we will call you the evening before to confirm. No food or drinks after midnight (if you are really thirsty, it's OK to have one or two glasses of clear liquids up to 7 hours prior to your scheduled surgery time) and you can take your morning medication with a sip of water. Bring all your medication with you on the day of the surgery and a little bag with whatever you feel you will need during that time. Leave your valuables at home.

(I need to find a way to smuggle in my laptop so I can post stuff to the blog)

Prior to the surgery, we will get an IV going and you will be offered some sedation to help you relax.
- No thanks, I already have a CD for that
- Pardon me?
- Never mind
(Lindsey is thinking: cancer is not the only condition this lady has...the mind is clearly affected)

- You don't have to accept the sedative, you can go into the OR completely clear-headed. We authorize up to two family members to be with you up until the time you are taken into the OR. Then they are welcome to wait around.
- Can I bring my two cats then?
- Pardon me?
- Never mind

- Ok, I think that this is about it. We need to draw some blood, and do a chest X-Ray. For that, you need to take this form down to XRay East which is just beneath us.

The form says: diagnostic test, Pre-Op CXR (Chest X-Ray) - Diagnosis: Cervical/Uterine Cancer.

After my little vampire session, I go down to XRay East to hand out my piece of paper. The lady at the reception puts a "PRE-OP" sticker on it and returns it to me.
"Now you need to go to XRay North. Do you know how to get to North?"
- I am confused, I was told to go to East.
- Yes, this is East, now you need to go to North.
- I see...Do you hand out compasses?
- Pardon Me?
- Never mind

I wait for another hour in front of "North" (it is close to 1pm by then and I am STARVING - my stomach is making all sorts of rock'n'roll harmonies).
An elderly gentleman whom I saw upstairs is wheeled in. He comments to the person who's accompanying him. "I really liked this doctor. She was hot."

Hilarious...

Upon reaching page 327, I get called in for the X-Ray which lasts for about 20 seconds and sent home with no further paperwork.

Surrogacy

2007-05-09T20:03:00.000-07:00

I just had a chat with someone who went through a surrogate mother. It was also for medical reasons (another condition which increased the risk to the mother during pregnancy). The person I talked to was so helpful. She said that I could call her at any time if I have questions or if I just want to share feelings and emotions. She didn't have anyone to talk to when she went through this because she didn't know anyone who had used a surrogate mother and it would have helped her a lot.

- Prior to making the choice to go with a surrogate, this person struggled with the same feelings and emotions. "am I not turning my back on the most wonderful thing in the world?", "I won't be able to control the surrogate mother, what will happen to the child" ,"how much risk does a pregnancy really represent?"
- Her husband finally pushed her into this direction as he really did not want her to put herself at risk for a pregnancy.
- They went to a lawyer (who was infertile) and who now runs a practice to help women find surrogate mothers. This lawyer had a really bad time because nothing was set up right and decided to solve this for other women.
- Apparently, surrogate mothers are carefully screened and must meet at least these two criteria: not be in need of money so that cash isn't the sole motivation for doing this and have had children of their own and be in a relationship.
- Selecting the surrogate works like "match.com". The parents write a profile of their preferences (usually, no smoker, etc...), the surrogate writes a profile of the couple they want to help (for instance, has to be their first child, has to be a married couple, etc...). The "agency" then selects a list of surrogate that match the couple.
- The couple has access to a lot of information to select the surrogate such as "medical history, family history, personality/lifestyle, annual income, a photo and some 15 pages of information that the surrogate writes herself. Also info about how they feel about abortion (so if birth defects were noted during pregnancy, the mother and the surrogate need to have the same idea about what to do about it).
- Once they pick a profile (or several), they can meet the surrogate in person and have a conversation with this person. Usually, they ask some more questions and share concerns/worries/feelings.
- After the couple picks the surrogate, legal details are arranged through the agency and the medical aspect is handled by a fertility clinic. (usually IVF and insemination).
- After the pregnancy starts, apparently it's hard on the "biological" mother. In this case, they were meeting the surrogate only to see her pour herself a cup of coffee, or to find out that she would eat junk food. However, so long as really bad things such as alcohol, drugs and cigarettes are avoided, the rest seems to be ok in moderation. The fetus seems to be able to filter a lot of the bad stuff that comes from the mom. In this case, they chose to maintain a good relationship with the surrogate at the expense of control. They don't know how well/bad the pregnancy would have been if she had decided to carry the baby.
- Apparently surrogate couples are more careful with those babies than they are with their own because they feel an awful lot of responsibilities toward the parents.
- It took them about 2 weeks to find this surrogate mother (they picked the first one that was presented to them)
- In their case, they had twin boys, born prematurely (at 32 weeks), but now very healthy.
- The person was glad not to have been through a pregnancy in hindsight (and she doesn't even think about the surrogacy now, she really started to bond with the children after they were brought into the world) because a lot of people around her had a poor experience with it. She didn't have to worry about this and could spend a lot of time preparing for the arrival of the kids in her home.
- They (the couple) are still friends with the surrogate mother (this is rare apparently because of the tensions that arise during the pregnancy). They exchanged pictures on a regular basis. In a couple of weeks, the surrogate couple will come and visit to see the twins.

This was an extremely helpful call...Hard to tell how I feel about this...

Play at a recital and recite at a play?

2007-05-08T21:47:00.000-07:00

Hello cosmic powder friends,

My regular OB/GYN (who performed the first surgery, the -polypectomy) called earlier this week. She asked about the various recommendations. She seemed happy that I had some frozen embryos ready for the microwave, she talked to me some more about the surrogate mother program, tried to address some of my concerns there. She said that she couldn't really help me in terms of recommendations because cancer wasn't her specialty . She did say that getting pregnant wasn't worth my life, just in case this was the choice that I was facing...

My medical insurance company left me a voicemail on Friday. I just returned their call. It was to their customer service department and I got to speak with the sweetest nurse in the galaxy. She called me because the company got notified of my upcoming surgery and she wanted to make sure that I was OK, that I had all the information I needed, that I felt comfortable with my team of physicians and see if she could do anything for me.

They have special services to help patients cope with the stress of surgery (I am not in the least stressed, it's the only time when I get to sleep all day...). She asked if I preferred the CD or the cassette format for the "relaxation program" audio guide. I shouldn't listen to it in the car as it has a strong narcotic power. She will call me back one week after the surgery to make sure that I am doing OK.

How bizarre. This changes my view on insurance companies being an administrative hell, with a production line for every type of claim that randomly tosses forms as a yield management method. I am a little surprised as this is the third surgery I am having in the past few months (one as outpatient and one as inpatient) and I never received a call like this before. What's so special about this one? Do they do this only for amputations? Or have I finally become a national celebrity in the medical field?

Anyway, I guess it's always nice to receive a call from someone who wants to send you a CD.

I went to the Symphony with Nathan last night to listen to a recital performed by Murray Perahia. Some Bach and romantic pieces. I liked the emotion that he gave to the Bach pieces, although I wasn't a fan of his use of the pedal for those pieces. It lacked some of the purity that I would expect. The romantic pieces were phenomenal.

The day would have been just perfect if it wasn't for a stomach that got a little upset. All is fine again now.

It was nice to be out and renew with music. I haven't played the piano for the longest time (3 years I think) but I am still totally in love with music, and I could listen to Chopin all day long...Still haven't made a decision about next steps (eg. try most aggressive or least aggressive approach now). A friend e-mailed me "there is nothing more wonderful than the birth of your own child".

I haven't experienced this but I am tempted to agree...

Various medical opinions...

2007-05-04T10:08:00.000-07:00

I asked oncologist #2 about the report that she sent me last time. Here's her reply. "Yes - the report I sent you was about BOTH the cone and the polyp. They will clarify that on the report"

Strange, so oncologist #2's team and the rest of the world doesn't agree on the type of cancer it is...This could explain the difference in recommendation as oncologist #2 may have been working off of a different pathology report...

Here's my reply
"Thank you. It may be safer to operate on the basis of the adenosarcoma assumption for treatment decisions - it also seems to be the opinion of the other labs. No change to the step-by-step approach though. Except that now, I am very very confused..."

Here's something that I am learning slowly...Doctors have no clue for diseases that have not been well documented. They are the ones with the expert knowledge, the ones with access to all this research, the ones that can understand the "CD14 positive" type phrases. Yet, they all have conflicting advice and opinions...Even on the diagnosis...

Opinions range from:
- low metastatic potential, so trachelectomy now, no lymph node removal, a nice little MRI if margins are clear in 6 months, then a nice little pregnancy, then a hysterectomy
to
- radical hysterectomy now, slice of ovary for biopsy, lymph node removal in the pelvic area, adjuvant radio and chemotherapies, scans every 3 months for the first 2 years, then every 6 months for 3 years after that, then every year. Addtl scans for lung and colon cancer on a regular basis.

This from a breast cancer survivor I talked to:
"From everything I've read and asked, the benefits associated with chemo and radiation outweigh the risks. On the other hand, I have a friend that had breast cancer and she chose not to have any treatment and she's doing fine. It all boils down to risk -- it's a guessing game and there are odds associated with every move."
Except that in my case, the odds don't seem to be easy to calculate...

And this from an oncologist friend:
"You have clearly been seeing/speaking with lots of people and it seems you have felt comfortable with them. Liking and trusting your doctors is so important when fighting "aliens." From the e-mails you have sent, it sounds like all agree you ultimately need a hysterectomy/node dissection, and that all would probably favor sooner, rather than later, given the "unknowns and uncertainties" of cancer. The latter point, combined with the "rarity" of your typically slow growing disease, and it's apparent early detection, has at least allowed your physicians to entertain your desire to have a child. Did I get it right? I did speak with my
gyn colleague, who pointed out what you already know.
It sounds like you have a well thought out plan for trying a trachelectomy with close follow-up."

The "slow growing" part is because the docs have removed the main tumor and will remove the cervix which is where they believe the most aggressive part of the cancer has taken residence today. However, when margins are clear, you don't know if it was removed. And after a while, they will grow real fast (when they become bigger. My tumor was ~ 4cm, and there are 2 numbers that I have seen in literature. > 2cm and > 5cm. So I guess it was in-between).

How am I supposed to handle this? Take the most aggressive approach, even though the side effects are probably more serious because in doubt, it might still be the safest option?
One thing is sure. A side effect of being diagnosed with cancer - especially rare ones - is a fairly constant headache.

I had three voicemails yesterday/today.
One from my insurance company with a number to call back. The message just says - this is not urgent and please call back this number. Strange. First time I ever get a call from them.

Second voicemail was from from oncologist #3. She doesn't feel like she can answer my "if I were your daughter what would your recommendation be" question because she feels that she would be overly biased and give me an irrational and inappropriate answer. She said that she would want to protect her daughter and be overly conservative. She believes in informing the patient and make sure that she supports their decision with all the medical knowledge she can bring. She thinks that I should be comfortable with my decision and do what I feel is right for me. She believes that I am aware of the issues and she feels confident that I will be able to make a good decision. She will make herself available to talk more about this if I so wish or have second thoughts about my decision (to zip through a pregnancy).

The third one was from my mom. She'd like to talk about when she can come over...which is the last thing I want I think. So I guess that I'll have to say that.

Anyway, let's focus on the essential for now: enjoy your weekend! I will!

Good Sarcoma Resources!

2007-04-27T15:57:00.000-07:00

http://www.liddyshriversarcomainitiative.org/Sarcomas/sarcomas.htm

The Basic Question (the Basic Answer as we all know is 42)

Because so few people are aware of sarcoma, many of them will ask you, "What is sarcoma?" Some simple "Sarcoma Facts" are listed below. We have used them in numerous conversations with people to help address that question.

What is sarcoma?
It is a cancer of the connective tissues, such as nerves, muscles, cartilage, joints, bone, or blood vessels. It can arise anywhere in the body, frequently hidden deep in the limbs.

How prevalent are sarcomas?
About 1% of all adult cancers are sarcomas.
Between 15-20% of all children’s cancers are sarcomas.
There are hundreds of thousands of patients and their families struggling with sarcoma world wide

How are sarcomas treated?
When possible, sarcoma patients have surgery to remove the cancer. Surgery is often combined with chemotherapy and/or radiation.

Why are sarcomas dangerous?
They are often misdiagnosed. Sometimes they are thought to be sports injuries.
When they are diagnosed, they may be large and difficult to remove surgically and they may have metastasized.
Many sarcomas resist current treatments.

And treatment information: (note that the most aggressive recommended treatment that I have received, mainly because there is no data is: hysterectomy, removal of lymph nodes for biopsy, post surgery radiation and chemotherapy - even though it seems that they don't really know whether that's a good idea or not)

And from our friends the Brits!

http://www.cancerhelp.org.uk/help/default.asp?page=4568

And an incredibly useful statistics page with no stats at all!!!!
http://www.cancerhelp.org.uk/help/default.asp?page=4569

Oncologist #3 and Tumor Board recommendation

2007-04-26T11:57:00.000-07:00

Hello hitchhikers to the galaxy,

I just met with Oncologist #3. I like her a lot now. She's extremely funny, knowledgeable and I think very human. She seems to truly care about her patients. She told me a lot of patient stories. She knows their nationalities - and she seems to specialize in international cases-, she has followed them even after treatment, etc...

Before I start, I must report that I have lost 1 pound since my last doctor visit (on Friday) so I am actively working on eliminating the IVF waste :)

So, she said that she has talked to their pathologist who did take a look at the slides. He also happens to be a sarcoma specialist. Here's what he said:
"Hmm hmpf hooooom prfprf"

(I am not kidding, that's exactly what I heard)

I looked down (I was sitting on the exam table) at her with a face that must have displayed a cocktail of amusement, worry at a potential sudden declaration of madness and surprise. Since this sentence had not been spoken in any of the languages I master or slaughter, I asked for an English translation. The oncologist kindly obliged.

-"This is the rarest thing that he has seen in his entire career. It does look malignant, and it has aspects of the sarcoma but it also has some weird additional things going for it. The pathology report thus decided to call the lesion "atypical adenosarcoma". The Pathologist was so fascinated by the specimen that he's decided to continue to mess up with it, just for fun. Apparently, this made his day. I will ask Oncologist #2 to send him some more tumor tissue after the trachelectomy as a Thank You gift.

So the first piece of news is something that we have by now grown accustomed to. This is a very rare case, and a super weird looking tumor.

Armed with such precise information, oncologist #3 and the tumor board looked at the literature on adenosarcoma. That was fairly quick. No study fits my case.

Finally, they went on discussing my case....and the winner is...(drum rolls)
#1 complete hysterectomy with removal of the lymph node
#2 if the patient is aware of the risk, the board feels comfortable with a trachelectomy now without lymph node removal - and if the margins are clear, wait for ~ 6 months for tissues to heal, do an MRI. If the MRI does not show visible signs of tumor in the uterus/ex-cervix area, become pregnant. Ideally immediately after the scan. oncologist #3 suggested to wear a short skirt and invite a partner at the MRI session, so I could conceive within minutes of the results. Then go through a pregnancy - she feels confident that with the right level of care, I would have up to 70% chances to bring a baby to the 32rd week, which would be what I should strive for. Then wait for recovery and tissues to heal (probably another 6 months) and do a complete hysterectomy with removal of the lymph nodes. If the margins are not clear, then a hysterectomy at the same time as the trachelectomy (or shortly thereafter).

I asked what the risk was. She said that she couldn't tell me and didn't believe that anyone could because it is such a rare case within a rare disease family. The scans are clear and it looks like the tumor did form in one place, strangely enough but she won't know for sure about other seeds. The fact that they feel comfortable with a wait and two check up milestones. So basically, I need to be made aware of a risk that can't be quantified by anybody.

Recurrence rates (usually top of the vagina) after hysterectomy are high (over 40%, in some sarcomas, over 50%) so the risk of relapse does exist but she is not certain that waiting prior to the hysterectomy will affect this.

So she said, "I think it's OK if you have clear margins and a clear 6-month MRI to try a pregnancy. Just don't go anywhere during this pregnancy. Pop the baby out and blow this thing back into space. But then, I may be wrong. Oncologist #1 may be wrong and Oncologist #2 may be wrong. We will only know 5 years from now if you picked the right one..."

She added that there is currently no standard therapy for patients with recurrent disease. Typically, these patients are entered into ongoing clinical trials.

Upon leaving oncologist #3 said "It has been a pleasure working on your case. And just to make sure that the lawyers heard it, we do recommend a hysterectomy ;-) But I think that you can have the joy of a beautiful baby before that happens. If you ever have more of these really interesting situations, please come and see us again. And if oncologist what's-her-name breaks her leg or anything like that between now and March, I have a very very sharp knife..."

and Oncologist #2 reaction below

" My recommendations are similar for the most past - how do you think you would like to proceed?"

**************

I'd like to proceed one step at a time. Let's do the trachelectomy and wait to see if the margins are clear, if that is all right with you. It would be wonderful if I could go through a pregnancy but it looks like this doesn't have to be decided now.

After the hysterectomy, I think that I would like to be very conservative/aggressive."

*************

" as you said - let us take this one step at a time. "

Confusing...

2007-04-22T17:17:00.000-07:00

A new piece of evidence...

...that I am a star :)

From a friend who is a physician:
"I don't have any doctorly words of wisdom because I have never heard of adenosarcoma of the uterus"

This is for the nice part. The trouble comes from when my specialist confuses me...

"Yes I agree but our pathologists feel very comfortable. The radical treatment applies in the case of trying to clear all potentially microscopic metastatic disease but in this case there seems to be very little potential for that. I am quite willing to be very aggressive if you would like but that may not be necessary at this time."

Then, to support her opinion, she attaches the pathology report that I had seen after the first surgery (which indicated another type of cancer). Now I just read what it says next to the DIAGNOSIS line, as "diagnosis" is the only word I understand in those reports.

Sentences like "These cells are CD34 positive and focally S-100 positive." don't mean much to me frankly; although in this particular case, I am glad to know because I had been wondering about that.

Next to diagnosis is written "Uterus. Polypectomy" which describes the first surgery. This was at the time when no one could agree on what the problem was because there wasn't enough sample to make an accurate diagnosis (apparently, common with adenosarcoma since half the tumor is benign and the other half is malignant, it is often mis-diagnosed, even with biopsies)

The second pathology report that I was shown after the 2nd surgery clearly states "malignant Mullerian adenosarcoma" on the diagnosis line...next to which the words "Conization of the cervix" were written, This is not the report that my oncologist has attached...

I emailed back that I was confused (explained why) and said that I would call her. I wish all these people could speak plain English...
"I am confused. I thought that this was the initial pathology report (after the polypectomy), not the second pathology report (after the conization). The pathology report I was shown states "Mullerian Adenosarcoma".

Her response this morning: "I will look into that as I know we saw both the cone and the polyp."

tbc...

Work

2007-04-18T15:57:00.001-07:00

I am more involved in work again - I actually get to do a lot of what I really like. We meet every week with my manager to agree on the priorities for that week and we cut it down to what's realistic for me. Feels just like my life. Identify the priorities and ONLY spend time on those.
It makes you feel incredibly clean...

Still, I find that the emotional up and downs make it hard to be a reliable worker. The news from the radiation oncologist and the East Coast oncologist made me want to spend more time researching, talking to more people. I now would like to forward their messages onto my oncologist to see what she has to say. So this was not planned and it will take time. And obviously, I am fine with this. Between my little work project and my life, I haven't spent much time revisiting the priorities. Certain things just seem futile in this light :)

My company has been SO supportive. No expectations put on me, no pressure, actively engaged in a dialogue with me to find out what would work best, a million offers of help from everyone in my team including those in overseas offices, people jumped in to take care of the most pressing issues. I feel so incredibly lucky!

More Oncologist Advice

2007-04-17T16:22:00.000-07:00

Hello Klingons,

I have just talked with the retired radiation oncologist. I was very touched by this conversation. He was an extremely sweet person who said "please make sure that you speak loud enough so that I can hear you. I am 85 to quote only the major health deficit."

He said that he was going to talk to me as if I were his daughter, adding that if he learned that a 32-year-old daughter would have to have a hysterectomy, he would be very sad, but he would be devastated if he learned that this same daughter died. There was a lot of emotion in his voice. He said that he would be willing to talk to me all day if that's what it took to make me change my mind. He also said that I should keep talking and talking and talking before I make a final call on this. He said that as a physician he has dedicated his life to preserving life. As such anything he is going to tell me is what is the best course of action to preserve life in his opinion. NOT to preserve organ structure. It was a long conversation (he did most of the talking). Here are the main points.

- Sarcomas are very nasty beasts. Adenosarcoma is among the nicest of them but still a very nasty beast
- The reason why they are nasty isn't so much because they are aggressive (although they all grow super aggressive after a little while) but because they are resistant to a lot of the regular cancer treatments, so prognosis is very poor.
- Soft tissue adenosarcoma is a very rare tumor and there's virtually no data out there. The good news is that you get a lot of specialists who want to take a look at the case, the bad news is that they have no data to look at to make decisions.
- Sarcomas usually start as low grade (because they don't form a tumor then grow it, they migrate as individual cells to nearby tissues). However, after a while, they all become high grade (or rather, the grade becomes irrelevant) because the size of the tumor now determines the growth rate.
- Sarcomas first spread around nearby tissues with the jumping habit (in my case, that means that depending on how much time it's been there, there is a possibility that it is in the following area: uterus, cervix, Fallopian tubes, ovaries, vagina and vulva, even though the furthest of those have a much lower chance of already being affected. I mean, an inch for a microscopic cell must be like a light-year for us). Then, they are very eager to find a blood stream and they first metastase through the blood stream. Only at the very late stages will they metastase through the lymphatic system (that is based on known history).
- Recurrence rates do not seem to be correlated with the grade but they are with the type of treatment (eg the more tissue you remove, the less chances the tumor will come back). Still, they are among the cancers with the highest relapse rates just because they spread and seed without anyone noticing.
- This physician doesn't actually think that what's in the cervix is the primary tumor. His strong feeling is that it did start in the uterus and is spreading from there. He also said that for all he knows, it could have started in the ovaries.
- He believes that tumor boards answer the question they are asked. In this case, he feels that the question they were contemplating was "how can we maintaing max organ structure", not "what is the recommended course of action for uterine adenosarcoma. He said that physicians find solutions for their patients and can do pretty much what the patient wants them to do, even if it is not the right solution to preserve life.
- He doesn't care about which grade it is. He said that the grade only affected the rate of growth at the beginning. He doesn't change the jumping habit, in fact it is a product of the jumping habit and as far as he knows, there's so little data and this is a cancer that is SO HARD to treat if it is not caught by surgery that anything that's not a hysterectomy is too big of a gamble as far as he is concerned. He said that even for low grade sarcomas, there's no way of knowing how long they have been in the body and for this particular sarcoma, how long it will take for it to become more aggressive. He said that with a carcinoma, even an aggressive one, he would be more comfortable with different approaches because they are known entities. Not with sarcomas.

His main points were
- There is no data out there to make any decision. Be as aggressive and as conservative as possible in your treatment options
- Do not gamble on your life. It's not worth it. Because there is no data, it's a gamble
- Cancer treatments and research have made a lot of progress but NOT around sarcomas.
- This type of sarcoma is rare among the rare and one of the most determinant factors for treatment efficacy in terms of how spot on an oncologist's opinion will be is case history...there is no case history.
- This tiny little thing can kill me - and if I do nothing will kill me. The only question will be how long it will take. This type of sarcomas do not kill people by doing damage locally. They kill people because they spread without man knowing how to contain them and without telling anyone about where they go, thus seeding loads of new tumors all over the place.
- He thinks that if I don't do a hysterectomy now, I will live in hell because every day I will wonder when and where it will relapse
- He understands the emotional dilemna and how hard this decision is, apparently much harder than with patients that are told, you are just going to lose one of your feet. He still thinks that a radical hysterectomy right now is the right thing to do to preserve life. It is not a guarantee but the best shot I will ever get at a cure.

But then of course, he said that only I could make this decision and that I should stop by and say 'hi' next time I am on the East Coast. I'll be sure to bring a few of my pathology slides with me for his living-room.

******************************

I also called the oncologist who is currently treating a patient with recurrent uterine adenosarcoma (it recurred after a hysterectomy). He is not a GYN oncologist so he also asked the GYN onc. department and did some research. Here's what he had to say:

- There isn't a lot of data
- Treatment options are limited because everything is experimental. It's not that chemo doesn't work, it is that we don't know what drug(s) to administer. Adjuvant radiations may work better.
- Consensus is toward the hysterectomy - however, if it is really an early tumor, starting with a trachelectomy, esp. if the Stanford expert has voted OK - could be reasonable. He feels that he doesn't have enough data to make that call.
- He thinks that it's OK to do a trachelectomy, even if soon after, it is followed by a hysterectomy. It shouldn't spread the cancer further if it is performed by a trained oncologist. The main risk is related to anesthesia but he doesn't think that it is very big for someone my age. Apparently, I am more likely to get hit by a car tomorrow than to suffer brain damage from this operation.
- Doing the trachelectomy shouldn't do any harm. It will also help the oncologist confirm the staging and see if she sees anything wrong with the uterus when she goes in, or if it still looks pretty clean. They will also send the tissue to pathology labs so there will be a lot more data available.
- Waiting for one year is a very long time for a cancer, even if it is in early stages. It was already big enough to show up on scans (and fall into the > 2cm category)
- He would still recommend a hysterectomy now - he said that it is my best chance of survival.
- This tumor is heterogenous so he wouldn't bet on knowing the grade by just looking at a sample. Some of those cells may be low-grade, some may be high-grade
- Sarcomas are really hard to treat if surgery doesn't remove them. After a relapse, prognosis is usually very poor. If it spreads outside of the uterus, even if it doesn't really metastase, eg, just spread by tissue hopping, the prognosis would be much poorer.
- He is giving chemo now to the lady that relapsed. He has no idea whether or not it will work. He couldn't find any suggestions anywhere as to what treatment would work best.
- He doesn't believe that removing both the ovaries is necessary at this point. He would like the oncologist to perform the hysterectomy abdominally so she can take a look at the ovaries and see if they look weird. Or perhaps remove one of them to send in for a biopsy. It is also possible to slice out a small section of an ovary, freeze it and use it for biopsy. However, given the dual and heterogenous nature of this type of cancer, it may not provide enough sample.
- Since it is so rare and since there is no data, he thinks that I am bound to hear many different opinions. He doesn't believe that they can all be founded since there is no way of knowing how this cancer will behave. Did I say that in his opinion, a hysterectomy is the safest way to go?

Bottom line, no harm done with a trachelectomy. Hysterectomy is safer. So I can follow my plan of:
- challenge my oncologist with those opinions
- get the city hospital tumor board opinion
- go for the trachelectomy
- discuss next step after pathology results and surgery info

More Decisions...and info

2007-04-16T09:25:00.000-07:00

Hello First Class droids,

I wanted to share a few other pieces of information and associated questions in my mind.

- A breast cancer survivor told me: "Really, just get rid of it and be as aggressive as possible. They thought they had all of the bad cells from me too, and they used dye and everything, but less than a year later, it reappeared. "
- A friend oncologist wrote to me: "I am not sure where you stand with surgical/fertility decisions. I, though, pause and worry about you delaying your definitve treatment for too long."
- A close friend told me tonight (having asked an uncle who's an oncologist who's read up about adenosarcoma and who talked to GYN oncologists - and I believe one that's treating a patient for adenosarcoma, and a grandfather who is a retired radiologist, working with cancer patients): "Both said that anything but a hysterectomy is too big a risk at this time. Sarcomas don't respond well to traditional cancer treatment, so if they spread or come back, the prognosis is very poor. They say that I can forget about radiation if she doesn't get it out now, that surgery is my best shot at a cure. They haven't looked at my pathology slides but here's the thing, they don't seem to care..."

The main reasons that they gave seem to be:
- It's so rare that there's no data to base any decision on
- The "Sarcoma" aspect - which I already told you about...it's the jumping thing, not sure if it has a name...so the risk of the cancer spreading looks too high in their opinion.

And if I were my oncologist's daughter, I would be sterile by the end of this month.

I can't believe that my oncologist is suggesting to me an option that would be obviously wrong.

Anyway - I thought that this was a tad worrying. I will chat with these people tomorrow morning, chat with my oncologist about those opinions to see what she has to say (since the tumor board seems to be just fine with the idea of a trachelectomy right now), hear what the other tumor boards think, probably go through the trachelectomy since new info will be available after that, and then decide about next steps.

I remember my oncologist's words on the phone after the tumor board meeting: "we have discussed your case at length during our tumor board meeting. For quite a long time actually, and I believe that this is good news for you, but we think that you do not need a radical hysterectomy AT THIS TIME"
- Anything in there that I may have misunderstood??? -

If you have opinions, other references or suggestions, feel free to either post them as comments (which may trigger thoughts from other readers), or e-mail me!

(and some additional info:
So...I recall Oncologist #1 telling me: "You have an adenosarcoma, or a malignant adenosarcoma" which I thought was redundant.
If it is a malignant adenosarcoma, does this mean that it is malignant Mullerian mixed tumor? What's the difference between the two?

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6277257&dopt=Abstract
A case of heterologous Mullerian adenosarcoma of the uterus is presented with emphasis on morphologic differentiation, clinical course, prognosis, and treatment. This tumor was described first by Clement and Scully in 1974. Since that time 36 cases have been reported in the literature. The neoplasm consists of benign epithelial and malignant mesenchymal elements. The latter are composed of tissue with homologous and heterologous differentiation. Our microscopic and ultrastructural studies suggested that the heterologous elements were rhabdomyoblasts with a variable degree of differentiation. According to the literature the prognosis of Mullerian adenosarcoma is better than that of malignant mixed Mullerian tumor. The location of the tumor - whether intrauterine or extrauterine - seems to be more important as regards prognosis than the differentiation of the sarcomatous elements. The clinical course in our patients was not different from those described in the literature. Surgical removal of the tumor remains the treatment of choice. Some authors report a better survival rate when surgical treatment is followed by radiotherapy. Chemotherapy may be useful in cases of local or distant metastasis, and in cases of incomplete excision of the tumor mass.

***************************

I experienced vaginal bleeding, there was a uterine polyp which was removed during the first surgery which was a polypectomy and a cervical mass. Hmm...2% of the time originating in the cervix? Wow...My oncologist said that it had a 50% chance of recurring. I take it that this is so so news?

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9625851&dopt=Abstract

Section of Gynecologic Medical Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030, USA.

The records of 41 patients diagnosed with adenosarcoma of the female genital tract between 1982 and 1996 were reviewed. The median age at diagnosis is 51 years (range, 14-84). The most common symptom is vaginal bleeding (71%). Clinical signs at presentation include pelvic mass (37%), uterine polyps (29%), and enlarged uterus (22%). In 71% of patients, the tumor originates from the uterus. Other sites include ovary (15%), pelvis (12%), cervix (2%). A history of thyroid cancer, benign ovarian cyst, and polycystic ovarian disease is found more frequently than expected in this patient population, whereas no relationship to endometriosis is observed. Surgery is the mainstay of treatment, but platin-based chemotherapy given upfront in inoperable patient has definite efficacy. An overall response rate of 92.5% was observed after primary therapy (surgery with or without radiotherapy, and/or chemotherapy), with a median survival of 48 months (range, 1-174). Thirty-eight percent of patients had recurrent disease. The median time to recurrence is 12 months (range, 5-132). Although 60% of patients with recurrence achieved a complete remission after treatment, only 1 (8%) is alive without disease, and 3 (22%), with disease at the time of this analysis. In our series, histologic sarcomatous overgrowth is a predictor of poor prognosis (p<0.03),>)

About soft-tissue sarcomas. However, these are not adenosarcomas and not the uterine/cervical type. My oncologist said that there was data for sarcomas in other parts of the bodies, other types of sarcomas or other types of cancer in that area of the body but nothing that really combines everything. So all this data is to take with a grain of salt. Basically, they have no real clue it seems :)

It also says that low grade/high grade diagnosis is hard to make since this is a heterogenous tumor, eg, some of it may be low grade and some of it may be high grade and it's hard to know because the biopsy may remove only low grade portions.

Sounds like the main difference for the staging of a Sarcoma is that grade (and size) is incorporated in the determination of the stage. Interesting still.

http://telescan.nki.nl/start/chapt-01/chap1-4.html
http://telescan.nki.nl/start/chapt-01/chap1-6.html#6.1

Blessing

2007-04-14T14:58:00.000-07:00

Hey folks,

I am going to make a paradoxical statement. I think that this diagnosis *could* be the best thing that has ever happened to me (comes in third actually, after my birth and the fact that I naturally don't like chocolate). I have heard a lot of people talk about an illness or something bad that happens to them and say that they feel so fortunate about it because it has somehow transformed them. Every time, I would think "I don't know what those guys are on but it must be real good"- perhaps because I figured that this was what they needed to believe in order to carry on. I think that I understand much better what they might have tried to say. I also believe them now. I don't quite feel the same (I am having a hard time accepting the possibility of infertility) but I am starting to believe them.

I also feel lucky that things are moving slowly. They allow me to take it all in at my own pace and mature both my thoughts and feelings. I realize that this may be a very selfish attitude because I am sure that this situation is also very tough on all of you. Hopefully after reading this you will feel a little better!

I am going to try to explain how I feel - I don't expect you to believe me. I wouldn't have believed myself two days ago.

Here are a few differences between my reaction to this event Vs. to some other tough things that have happened (such as my Dad's death when I was even shorter than I am today, meningitis and the boredom of the same bedroom for months, a close family friend dying of the flu, some PTSD-related events, even being dumped by my ex. The whale thing was a vacation so it doesn't count. In general, anything happening near Hawaii does not qualify as drama).
- I am not trying to act as if nothing had happened (for me to take it easy at work is a premiere!!)
- I felt compelled to tell everyone and thie overflow is support feels wonderful
- I am not trying to find means to keep myself busy and not face the situation
- I am curious about how this event is changing the way I FEEL about myself/others
- I am not trying to look like a hero and pretend that I am perfect
- I am not worried about how people will perceive me (not anymore. Early on, I was really concerned about how men would perceive me after this. Like a half-woman? I would elaborate all these nightmare scenarios in which I would try to date a guy and he would always walk away the minute he'd discover that I am sterile. Worse! In this nightmare scenario, I would think that he would be absolutely right to act like this!!! I really felt that my identity as a woman was going to be altered forever. I find this silly now).

The strangest thing is that this is a time when I feel extremely vulnerable and strong at the same time. With all the previous events, my sense of personal security was affected but I excelled at building a fence around it, to give me the illusion that everything was cool. Maybe it is a mini-representation of life events - haven't you ever felt betrayed (by your body, by God, by friends, destiny, etc...) when something bad has happened to you? Haven't you looked back at some tough experiences and realized that you have grown tremendously through them?

What may be the most difficult in all of this is that I repeatedly hear people say that past the "one shot" (eg surgery), there may be nothing to do, or rather, nothing proven. I feel that we all like it when there's a battle with a well-defined enemy toward whom we can point our guns. We may feel scared but our bravery often expresses itself through some kind of heroic action. So long as we are doing something, not everything is lost. This is probably how I found the whole whale experience rather fun and interesting. There always was something for us to try. At no point in time was our situation REALLY desperate.

Anyway :) One step at a time! I wish you the most wonderful weekend!!

Visual Aid - Giving The Enemy A Face

2007-04-13T11:16:00.000-07:00

in English
http://commons.wikimedia.org/wiki/Image:M%C3%BCllerian_adenosarcoma_of_the_uterus.jpg

and in Spanish (an even bigger one!)
http://www.zambon.es/areasterapeuticas/03mujer/atlas/fichas/1023.htm

It actually looks really pretty, just like a butterfly!

And a live trachelectomy (GROSS!!!!!!!!!!!!!!!!!!!) - You have been warned...
http://www.youtube.com/watch?v=NVsczkyLdOA

And some info about Kitty Grass. No, this is not about my new joint venture.
I just got the cats some kitty grass. They love it and it works beautifully as a distraction from the flowers. I like green solutions a lot :)

I had to ask for some assistance since my oncologist didn't want to believe that my cats would be smart enough to ask for help if things went wrong. I got her to agree that they could be trained to dial 911 but she remained doubtful about their ability to communicate effectively what the problem might be. Here's a copy of the e-mail. And many many thanks to those who have already volunteered.

"Brave Alien Fighters,

I have just booked a relaxing few days at the 4 * lodging at Hospital Beach. I will continue my vacation with 3 weeks of intensive bed meditation training, taught by Hershel and Pumpkin. Around this time of deep soul searching, I may need a little help with the mundane earthly chores such as driving and cooking. Here is a copy of the program I have received from the tour operator.

checking into Hospital Beach Hotel. I am looking for a Chauffeur to drive me to the hotel...I am told that they will try to schedule me as the first case of the day so this could be something applicable only to early risers.
During that time, Hershel and Pumpkin would require a one-time/day Purina calories booster in preparation for the bed meditation training, as well as a little scooping of their royal quarters. Best delivered by a local neighbor.

3 days later: looking for a Chauffeur to drive me back to the bed meditation facilities and complete the one-time/day Purina Calories Booster for the bed meditation training feline coaches.

Therapeutic bed meditation courses taught by cats are in the final stages of approval with the FDA. As a result, such courses still require human supervision in the first few days of their development. This could be broken into
Daily
- Morning attendance (work from home type...) - croissants/coffee can be provided
- Afternoon attendance (work from home type...) - lunch and afternoon tea can be provided
- Evening attendance (cool DVD on the Wall can be offered) - wine and dinner can be provided
- Night attendance (very entertaining with cat chasing) - herbal tea. pillow and heating can be provided

Nursing degree not required. The cats are very experienced.

Volunteers can apply via e-mail, responding to this message with their preferred choice. Their name will be entered in a special draw to win a "Day Sail" on the most uncomfortable 27-footer you have seen. The cats will get in touch with them about next steps.

Thank you!"

Planning Surgery

2007-04-12T15:26:00.000-07:00

Hello crowd,

Busy day today.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1835616&dopt=Citation

This is a different type from what I have but it is a very interesting read. I actually found a really interesting article on how ants plan their vacation. I will look it up and post it too. I am sure that you will all find it extremely educational.

I drove to the cancer center this morning, after a little dispute with the cats over the ownership of my pyjamas. My appointment was at 9:00. I got there at 8:47 (that's what it says on my parking ticket, my memory isn't that good)

First Class Service:
At about 9:20, I still haven't been called. Someone walks up to me with a hospital badge and kindly asked me if she could do anything for me, since she noticed that I had been here for a little while. I asked for some water, she took a note of it on her "order book" and she brought me a bottle. Wow! This beats the ice chips!!! Next time, I'll ask for champagne!

I only had time for a sip before I got called by the nurse. Of course, my vitals had to be taken again...And I am sure that on Tuesday at the other hospital, they will check my blood pressure again and make sure that I haven't lost a few inches. Slightly overweight since last time (the miracle of IVF cycle) but otherwise I quote the nurse "Wow, you're in great shape".

Of course :) I have a demanding master: my boat!

Then I saw Oncologist #2 and we talked about next steps. Whenever I talk to her, I feel ready to take a medical exam. Somehow, she's really good at communicating in really clear terms what looks like a complicated situation. Battling cancer feels like a detective story to me. First there's a bad guy (let's call him The Sucker from now on). Then there are clues (tumor size, grade, stage of cancer, age of patient, etc...). More investigation can be done (loads of tumor board meetings, more lab tests, etc...) and then sentences can be given (trachelectomy and 2 weeks of bed rest in a state-approved facility). It's even presented like a TV series, one episode at a time. a) conization, b) IVF cycle, c) trachelectomy. Each time, you don't know what happens next!

- We will start with the trachelectomy, then see what comes next. She will learn a lot during the surgery and we will use this knowledge to make the next decision.
I said "It sounds like it's pretty benign right since we can wait all this time" - to which she replied: "No cancer is benign. They are all nasty. Some are just more gentlemanlike in how they decide to put their victims to death. Like I said, the safest option is to do a hysterectomy now. Anything else carries more risk. How much is hard to tell"
- Assuming that it is safe to go through a pregnancy before the hysterectomy, Oncologist #2 wanted to discuss other things. She said that there are 4 types of treatments for sarcomas (one can be a combo), although it is a cancer with one of the fewest treatment options...
#1 surgery: always has to be done and is always the safest path
#2 chemotherapy: this works only after the tumor is more aggressive. In my case, the tumor was removed and after the cervix is removed (apparently > 95% of the cells there are cancerous now...), the seeds will probably be small enough. It could take another 1-5 yrs before it becomes aggressive. However, it could spread to nearby tissues quicker. So chemotherapy could not work after the trachelectomy and not for a while. It would have been an option prior to the first surgery but not necessary now as they shrunk the tumor with two successive waves of partial removals :) So no chemo for now. Sarcomas are not receptive to a lot of chemo treatments but to some in very special cases. Prior or after the hysterectomy, in say, a year or so from now, it may be required.
#3 radiation: this is the most commonly used treatment for sarcomas. She will wait until after the hysterectomy, otherwise, my uterus would take even longer to heal and it would delay the time when I can get pregnany. She believed that time was more precious that a radiation cycle. However, she thinks that she will probably order post-op radiations after the hysterectomy. Apparently, there is conflicting data w.r.t. whether or not that's a good thing. She prefers to be conservative.
A combo of #2 and #3 is also used in some cases
#4 hormonal treatment - so even though this sarcoma is not ERP+, there might be some hormones that could kick its bloody little ass. And this would not damage the uterine tissues and might be doable during the 2-3 months recovery time. So we will discuss this after the surgery. If she believes that it won't actually buy me a lot more time, she may drop it.
- I asked about how the ovaries could be protected if she wanted to do radiation to the pelvic area. She said that she could detach them from the uterus/Fallopian tubes and stitch them up somewhere else. She doesn't want to do this prior to the hysterectomy because this could make the fertility's doc job more complicated than it needs to be. Instead of needing an ultrasound to assist the egg retrieval operation, the fertility doc would first need a GPS to locate the ovaries. Oncologist #2 said that it was a really easy and quick laparoscopic procedure which could always be done prior to radiation. So no need to do this now.

Trachelectomy:
- Trachelectomy is scheduled. (she gave me the choice between two weeks. I pushed it out as much as I could. This doesn't make any sense but somehow, I feel that I want to keep my cervix as long as possible). It couldn't be earlier because the ovaries are still swollen which means that there's increased blood flow in the pelvic area which increases the risk of hemorrage. I am not a doctor but this doesn't sound like a good thing.
- Oncologist #2 expects me to be in the hospital for about 3 days unless I recover extremely quickly. She also asked me to take 3 weeks off (she will sign the papers for short-term disability leave) to recover at home. She said that there will be much more post-op cramping, bleeding and pain and that she will have to manage this with more narcotic painkillers as well as nice bed rest. Given my last "slaughterhouse" experience, I wasn't going to argue with this at all.
- Oncologist #2 explained that they will put a catheter in my bladder so that I can stay in bed without having to go to the bathroom. Nice! ;-) This should be removed when I leave the hospital.
- Oncologist #2 wants someone to stay with me for 5 days to a week during that time...(well, hopefully, minus the 3 days in the hospital???). Hmm. This will be a logistical challenge. Also I need to find someone to drive me to the hospital, then drive me back home upon discharge.
- They don't expect that they will need to do blood transfusions from a donor (they can recycle my own blood during surgery apparently) but they said that I should know about the blood bank and the fact that I can donate blood in advance if I want to. Now, if I choose to do this, I will have to wait longer for the surgery because they will have to wait for my counts to come back up (I will be anemic). No point really. On top of that, I'd have to pay $175 for each vial! They told me that I had 1 chance in half a million to get infected by HIV and 1 change in 60,000 to get infected by Hep B virus (I got a vaccine for that, so should be no problem). I replied than unfortunately, 1 change in half a million is exactly the type of odds that seems to apply to me...
- Oncologist #2 is planning on doing the procedure vaginally (with a side incision). However, in some rare cases (that has got to be me!), it is not possible, in which case, they will do it via an abdominal incision. She will also put a circlage which will permanently close the uterus. That is, until the uterus is removed, I guess that how permanent this fix will be.
- Total recovery time is 2-3 months
- Limited sexual activity (read no penetrative sex) for at least 8 weeks post-surgery.

All in all, this looks like a really friendly procedure. Really looking forward to it.

During the surgery:
- Dr. will remove the cervix, stitch close the uterus, connect the top of the vagina to the rest of the uterus.
If she gets clear margins after that (no visible cancer cells for 2 cm above where the cervix used to be), she will then freeze at least 1cm of tissue of those cells to kill them and reduce the risk of recurrence. Remember, that this won't mean that I am cancer free, given the nice little jumping feature of sarcomas. It will just mean that the trachelectomy was successful and that the risk of the cancer growing back to worrying levels (eg ready to spread) within the next year or so will be low enough in her opinion that I could envisage a pregnancy during that time.

If she does not get clear margins OR if she sees visible tumors or lesions around the uterus, she will not proceed onto doing a hysterectomy because I didn't sign the consent form. She will wake me up and ask for my permission. She said that I would always be free to refuse and let the disease hold its course. (not my intention obviously, but I figured that I'd want a chat with her). Then she would schedule the hysterectomy within days of the trachelectomy.

She will remove my uterus during this procedure only if it is required to save my life at that time (eg some uncontrollable blood flow, not cancer-related). Apparently it's a pretty technical operation and not many oncologists can do it. So I had to sign a semi-consent hysterectomy form (if it is an emergency situation and this is required to save my life). On the form it says it big bold letters: "YOU UNDERSTAND THAT A HYSTERECTOMY WILL MAKE YOU PERMANENTLY STERILE"
Thanks. This is exactly the issue I have with the procedure.

Post Surgery
- She said that if I did manage to get pregnant after the trachelectomy, I would have to plan to spend 19 to 20 weeks in bed prior to the birth!!! That's months!!!!! She also made sure that I knew that there would be an increased risk of pre-term labor and miscarriage and that I shouldn't get too excited.

We talked a little bit about all these stats. Apparently, sarcomas do recur. In my case, even if she removes the uterus, it could recur at the top of the vagina for example. There is no defined therapy for recurring sarcomas and they have a poor prognosis, even if they start out slow. She said that we would have to watch out for that.

The other problem is due to limited detection abilities. So a lot of women are diagnosed too late for just surgery and post-op radiations. (although this does not explain the "stage I" stats).

The last issue is the fact that with this jumping habit, it can sometimes spread without anyone noticing.

She did say that I was unbelievably lucky that they have caught this early. She has no idea why I experienced any symptoms (but then I am a rare phenomenon, I think that this is by now a generally accepted fact). She is honestly not sure about my prognosis. She suggested to discuss this again after the trachelectomy. She feels that short term, it is very manageable, mid-term (5 yrs), she finds it hard to tell. Sarcomas usually carry bad prognosis. This type is among the nicest of them (in terms of predictability) but also has only a short window during which it can be treated, and apparently treatment options are more limited for sarcomas.

So I signed the half dozen consent forms and made my "pre-anesthesia" appointment. On a roll.

And an e-mail from the other hospital...

"Hi
Received your slides they have been submitted to pathology. Thank you for all your help with the slides.
Thanks"

Thank God. I drove all the way back to the city, elevated myself to the 4th floor of one of the medical center campuses, picked up the envelope with the slides (while she made copies of some forms, I took a look: positively disgusting. Sort of blood puddles between glass...I remember now why I am a vegetarian). Then I took the precious envelope to the city Cancer Center which also happens to be on the 4th floor and handed it over to the receptionist.

National INSEAD Alumno Association just sent me some flowers!!! How nice of them! The card says
"Thinking of You. Best Wishes From Your INSEAD Friends". I am now busy building a fence around it to protect it from the cats.

More Admin Stuff!!!

2007-04-11T16:08:00.000-07:00

And I was thinking that this would be a quiet week! Big mistake!!!

I had to fax a homemade release form to Oncologist #2. I got a call today from the office of Oncologist #3. Oncologist #2 office just sent the pathology slides back to the medical group of my regular OB/GYN. Apparently, it needs them for their tumor board meeting on Thursday (???? Why???? I don't have any follow up appointments with them) These slides are real stars...Every tumor board is trying to get hold of them. Even I need to fit my schedule around their meetings.

I called that medical group Pathology Lab. They will have the slides ready for me to pick up on Friday at noon (Friday morning, I have my follow up appointment with Oncologist #2, in exactly the opposite direction, 30 miles away). I will then drive a few blocks down to bring them to Oncologist #3 so that she can discuss them with her team prior to her weekly tumor board (scheduled for Tuesday, my next appointment with her is right after that meeting).

I am sure that all these people are very good at medicine. I can see where I could contribute a few workflow/process improvement hints though...

My brother called earlier today - apparently, one of my mom's friends is suffering from cervical cancer. It wasn't treated properly apparently and now she's in a pretty bad condition. My mom was understandably quite upset about that.

Obviously, my situation is very different.

a) I am starting a treatment
b) It is very early stage
c) I have a team of world-class specialists taking care of me
d) I have made a specialty of beating the odds

However, I have a feeling that telling my mom that I have uterine cancer at this time may not be the smartest thing to do...

And some useful info!
Treatment Options for Uterine Sarcoma:
http://www.cancer.org/docroot/cri/content/cri_2_4_4x_how_is_uterine_sarcoma_treated_63.asp?sitearea=cri

What is uterine sarcoma (my type isn't exactly listed there):
http://www.cancer.org/docroot/cri/content/cri_2_4_1x_what_is_uterine_sarcoma_63.asp?sitearea=cri

Sexuality after cancer treatment (Mayo Clinic):
buh...better stock up now!!!
http://www.mayoclinic.com/print/cancer-treatment/SA00071/METHOD=print

Why uterine sarcomas are hard to detect (and why I am so lucky):
http://www.cancer.org/docroot/cri/content/cri_2_4_3x_can_uterine_sarcoma_be_found_early_63.asp?sitearea=cri

General info:
http://search.nlm.nih.gov/medlineplus/query?FUNCTION=search&PARAMETER=uterine+sarcoma&DISAMBIGUATION=true&SERVER1=server1&SERVER2=server2&START=0&END=25&MAX=500&ASPECT=0

What is uterine sarcoma (and why adenosarcoma is the rarest of the rarest...):
http://www.wcn.org/interior.cfm?pagetype=detail&diseaseid=15&contentid=10600&featureid=1&ContentTypeID=1

Uterine Sarcoma spread in all sort of ways that doctors do not understand:
http://www.wcn.org/interior.cfm?pagetype=detail&diseaseid=15&contentid=10607&featureid=1&ContentTypeID=1

Staging (I am assumed to have the beginning of a stage II cancer right now):
"Stage II. The cancer has spread from the uterus to the cervix. The cervix is the lower end of the uterus that connects to the vagina."
Except that in my case, it started in the cervix, even rarer :)

Various treatment info:
Chemo not generally used, hormonal treatment often only ok temporarily
http://www.wcn.org/interior.cfm?diseaseid=15&featureid=1

So long!

Another Professional Advice

2007-04-10T10:23:00.000-07:00

(from a radiation oncologist)

"
uterine sarcomas are fairly rare the best current advice on proper treatment is from the NCCN go to http://www.nccn.org/professionals/physician_gls/PDF/uterine.pdf

There is also a web site about uterine sarcomas : http://www.aboutcancer.com/uterus_sarcoma.htm

if the woman has a hysterectomy it may be possible at the time of surgery to preserve the ovaries and transpose them (move them out of the pelvic area) so that if postOp radiation is used the ovaries can be spared.... if the surgeon didn't move them then routine postOp radiation to the pelvic region would basically wipe out the ovaries"

Ahem. So the oncologist said that she would try to avoid radiation after the trachelectomy because it would wipe out the ovaries. I heard two possible solutions after the hysterectomy:

- this "surgical" trick
- take a special hormone to shut down the ovaries during the radiation cycle

In passing...I read. People with stage I disease have a 50% survival rate. People with Mixed Mullerian Tumors (mine :)) in some cases 33%.

But then stats mean nothing :) Nobody gets hit by a whale either. Or it's just like someone telling you that you have 50% chances to have a boy (Vs. a girl). It's not really helpful in your case, eg. it doesn't give you any info about the gender of your child...

Egg Freezing and The Path To Sainthood

2007-04-09T12:03:00.000-07:00

Dr. Westphall does a conference call, which you can download/listen to at:
http://www.extendfertility.com/experts/learn.php
Pretty cool stuff!!! Dr Westphal is a pioneer in that field. Apparently, they really get 10 to 20 eggs normally...I guess that 7 is really on the low side...And apparently my FSH level was a little high (12, whatever that means!) which could be the problem (eg, not so responsive to the drugs).

Some of you have asked me about timing for the trachelectomy. I needed to wait for 6 weeks after the last surgery before any other surgery. So this gave us time for an IVF cycle and it fits perfectly with this schedule because I also need to wait for 3 weeks after the egg retrieval procedure before I can have surgery. The egg retrieval procedure is performed under anesthesia but it isn't really a surgical procedure in that there really is no incision. It's just a big needle :)

And to end on a happy note!

GYN Cancer is accepted by all religions and peace movements around the world. This is a disease that just makes it impossible for patients to sin. During various treatments (or related protocols such as IVF cycles), it is dangerous to:

- Drink alcohol (even wine...)
- Have intercourse
- Enjoy the sun
- Indulge in more vigorous exercise than hoisting fork to mouth
- Eat ice-cream, milk-based pastries and cheese
- Drive a car

It also sounds very difficult to be French without sin then. No sex, no wine and no cheese???

How Can I Break The News To My Mom?

2007-04-08T09:56:00.000-07:00

Just spent a fabulous afternoon with a wonderful friend of mine. He's the kind of person I feel I can talk to about anything. He's also the best cook I have come across :) What makes this chat interesting is that we talked about how I could break the news to my mother. Damien suggested a letter. Apparently this is what he used once to share difficult news with his own parents. I was worried that it might be too impersonal, distant. Apparently, his parents didn't take it bad, they had time to think about the issue and they were more prepared and less distressed when he subsequently called them on the phone.

I was wondering what you guys thought about that? (I never send letters to my mom!).

Also - I love it when you comment on the blog. Why?
a) shared burden is halved burden and knowing that you are reading keeps me strong
b) comments are better than email as everyone can build on them
c) they are funny
d) I won't be the only one doing all the writing
e) this blog is a monument of literature
f) in 20 years, we will read them all with wide eyes and a thoughtful look on our face wondering how we could possibly write something so bizarre

Sahara and Pole Nord Marathon!

2007-04-06T15:41:00.000-07:00

From an INSEAD friend - this is amazing!

Hello Inseaders,

a couple of you are already aware that last month I ran the Sahara marathon, and will run the North Pole marathon in a few days as a kick start to a campaign we (myself an an insead friend) have just launched to raise awareness of the effect individual action from any and all of us can have in reducing carbon emissions - http://www.earthfireice.com - check out our website (still in beta, few issues need to be ironed out...) where you can pledge online via a google maps mash-up to make small everyday changes to reduce your carbon output.

As part of this would really appreciate your support in pledging on the map.
And in terms of the campaign itself, would love to hear any ideas, thoughts or suggestions you guys have.

As for the actual marathon itself, well i have had somewhat of a shocker with the training - you can laugh at our misery at www.earthfireice.com/blog !

and if you'd like to make a donation and sponsor me, that would be awesome - all monies go to the charities global-cool.com, pure trust and practical action (see w http://earthfireice.com/blog/sponsors for more details): - easiest is via the website, as you sign up to make a pledge, just tick the option to make a donation;

In addition if you're interested:

+ 6 min video on the Sahara marathon earthfireice campaign which we have just uploaded:
http://www.youtube.com/watch?v=b-af5vyqD1Q

+ Kriotherapy training in London last weekend: minus 130 degrees C!!
http://www.global-cool.com/en/2007/04/02/earthfireice-ice-baby
http://video.msn.com/v/en-gb/dw.htm?m=us&p=truveo&g=907c50a0-07c7-4678-8ae8-f49f73e6955c

Clingfilm run to train for the heat of sahara:
http://news.bbc.co.uk/1/hi/england/london/6378929.stm
http://www.thesun.co.uk/article/0,,2-2007080361,00.html

+ pictures of the sahara marathon and yours truely struggling through the heat - as well as pics of the refugee camps: http://picasaweb.google.com/sean.cornwell

+ Short 5 min video on the Saharawi people and their plight which our camera crew made which i thought you might be interested in looking at:
http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=2018644589

anyway, have to go and train now at -35C...off to the pole itself tomorrow!

Weekend!

2007-04-06T15:38:00.000-07:00

I spent a lot of time working on my sailing race program this weekend. I wrote up most of the crew manual, ordered a boat cover, did boat/rust work on the boat, registered for the next race, bought a sextant. I also cleaned up paperwork, dishes, clothes and have a pristine appartment (well, anything that my cleaning lady does not tackle on a weekly basis).
Tomorrow, I will work on some INSEAD association stuff.

This week will be a busy week. I have a improv board meeting and I want to throw myself back into work. I have decided that I don't want to let my mind wander around when I am at work. I have requested added 'artificial' short-term pressure to get me back in the mood. I really enjoy that. Until last week, I just couldn't concentrate on work. I only did the most urgent/bare minimum when I wasn't on sick leave. Now I think that I miss it!

Oh, and I need to go on some kind of diet to lose the padding that those unfriendly hormones have so generously given me...

Three Weeks Of Near Normal Life

2007-04-05T11:34:00.000-07:00

OK - I have a follow up appointment with Oncologist #2 next Friday and a follow up with Oncologist #3 the following Tuesday but other than that, the next three weeks leading to the trachelectomy should be pretty quiet.

I expect Oncologist #3 to agree with the other numbers (eg. the trachelectomy and a potential treatment should buy enough time to go through a pregnancy). I am sure that she will say that anything that's not a radical hysterectomy at this time is risky and it will be difficult for them to quantify that risk.

BTW - it's OK to post comments on this blog. This may encourage group discussions :)

So how do I feel?

Uncertainty was scary. There is still a fair amount of uncertainty now since most people don't really know what's safe and what's not but we are now dealing with something that has a name...I can dream of a sarcoma and punch it in the face a couple of times a day, or send the cats on a group attack.
Now that I know what it is, strangely enough, I do not fear for my life at all. There isn't 100% chance of survival, it is a little known cancer and it typically has a high relapse rate but so what. It's curable and somehow, I'll manage.

What seems to be the most difficult thing for me to accept is any potential loss of fertility. For a short while, the thought of babies or the sight of babies was unbearable and would cause me to break down in tears. Nothing else seemed to matter. My whole body was in revolt. When the first oncologist hinted at the possibility of racing through a pregnancy (even with reduced chances of success after a trachelectomy) prior to doing anything definitive, I became almost insanely focused on that goal. This strong biological need, fed by a sense of urgency, took enormous proportions. Everything else became secondary. When the oncologist would say "this is the risky approach", I would hear "it's possible, let's do it". I would read furiously through mountains of scientific articles about sarcoma, all of them pointing to the aggressiveness of the disease and the difficulty to treat it if surgery is not an option but I was thinking that they were all talking about a different sarcoma, not mine.
When oncologist #2 initially ruled out the 'wait time' between the trachelectomy (and potential treatment) and the hysterectomy (and probably more treatment), I felt like I had just lost a child. When they changed their mind and admitted that a trachelectomy may buy enough time for a pregnancy to happen, I was back in heaven!!!

So cancer meant nothing to me and fertility meant everything. Still does.

Things are not as bad now. I feel more relaxed about the whole thing but this need has not completely disappeared. Having gone through an IVF cycle probably contributed to increased peace of mind.

The most wonderful thing throughout this little adventure is how much closer I feel to my friends or people in general. First, there was a small group of people who so generously offered their unconditional support. Even when I would get bad news (fertility-wise), this team kept me going. Their e-mails, calls or visits would keep me strong, no matter what.

Initially, I was very shy about this. It felt too personal, almost intimate. Now, after so many casual conversations with oncologists, after so many personal reflections and prayers, it feels so natural. I had to tell people, and it was liberating to provide as much detail as possible.

As I shared the news of my disease, I was overwhelmed by responses. Most offered support of course but quite a few contained very personal information. As I had decided to open my heart, people felt compelled to respond in a similar manner. This outpouring of trust did not confine itself to cancer stories. People talked about relationship issues, about their family, their couple, their fears and doubts. I felt so honored to receive these confessions. My story looks pale in comparison.

I feel extremely strong now. I can talk without any shame about this disease. I can take in whatever will come my way and I feel so extraordinarily fortunate to be among so many wonderful people.

I can only be thankful for cancer to have taught me one of the most important life lessons!

Mixed Mullerian Tumors???

2007-04-04T19:28:00.001-07:00

from some GYN Oncologist Message Board:

Mullerian - refers to an embryonic structure from which the tissues of the female reproductive tract develop. The uterus, vagina, and fallopian tubes are referred to as mullerian structures in this context.

Mixed Tumor - Most tumors come from one type of tissue and are classified accordingly. For example, a carcinoma arises from epithelial tissue - that means from the covering or lining of the organs and passageways of the body. A sarcoma arises from bone, muscle, or other supporting or connective tissue. A mixed tumor has elements of more than one tumor type. In the case of a mullerian mixed tumor, there would be elements of both carcinoma and sarcoma - in this case, both the lining and connective tissue of the uterus. Mixed mullerian tumors in the uterus are often classified under uterine sarcomas. They are also called carcinosarcomas, to show both of their origins.

There have been some suggestions in the research literature that the drug tamoxifen may play a role in the development of some mixed mullerian tumors. In general, these tumors are quite uncommon.

Treatment - Often treatment information can be found under information about uterine sarcomas. Check out the Uterine Cancer section on this site, as well as this link about the treatment of uterine sarcomas. In the case of someone who has such a large tumor, it seems likely that radiation and/or chemotherapy will be suggested to shrink the tumor. Following that, surgery might be more feasible. Some studies have shown mixed mullerian tumors to be more responsive to chemotherapy than endometrial carcinomas.

Prognosis - Unfortunately, uterine sarcomas as a group tend to be more aggressive than endometrial cancers, and mixed mullerian tumors are no exception. As in most cancers, they are most treatable before they have spread. Sadly, from what you say, it sounds like this case has spread already, at least outside of the uterus. Of course, I can only tell you about general statistics, which may not apply to any individual case where I'm unaware of many of the details (besides not being a physician!). But in general, a mixed mullerian tumor that had spread outside the uterus would not carry a favorable long-term prognosis.

My best wishes to you and your family member. Please keep in touch and let us know how things are going.

and from: http://www.thedoctorsdoctor.com/diseases/uterus_mmmt.htm

"This malignant tumor of the uterus is also known as a MMMT. It is a highly malignant tumor that usually arises in the post-menopausal age group. It commonly presents with post-menopausal bleeding, abdominal pain, and distension. This tumor is aggressive and may also present with symptoms of extra-uterine spread."

Oncologist #3

2007-04-03T14:14:00.000-07:00

Some friend have referred me to oncologists. Given the main characteristic of this particular tumor (eg. rarity), I am certainly interested in getting more than one opinion!

However, some set the bar really high in terms of remuneration...Quoting from an email

"I'm sorry to hear about your friend. She has a form of uterine mixed mullerian tumour which I have seen only a few times in my career. The last lady with an MMT that I looked after was a concert pianist, and she gave me a recording of Rachmaninov's 2nd Piano concerto."

Not sure how I can beat this...

I slept all day and I am feeling great!

***********************

My REI clinic's favorite nurse just called to make sure that I was OK and to give me an update on my "cryopreservation" report.

They harvested 7 eggs.
Out of those 7, 1 fertilized beautifully and was frozen as an embryo
4 fertilized but so so (the nurse said that they were slow) and didn't display a 100% healthy behavior. Still they were frozen as embryos. They may not be viable though.

The others did not fertilize and were discarded.

I was also reading about this clinic. They really have a special program for cancer patients who face fertility issue (either because their cancer is a GYN cancer or because they need to have radiation). Apparently, less than 20 people in this case were treated by the clinic. They short-circuit their usual waiting lists for these patients. I feel SO fortunate!!!

I might have to go back to this clinic after the trachelectomy...

**********************

I had an appointment today at 1pm at another Cancer Center:

Initially, I had been referred there but after a week of daily calls that never got returned, I ended up with Oncologist #2. So today's visit was a fun one.

First you talk to an intern, (super nice and apparently, very involved in volunteer work, we could almost be friends :)) - and then The Dr. comes in.
She is a lot of fun. I liked her a lot! And she had this really inquisitive way to look at me without saying anything...

First she asked me why I went to that other center. I had to smile and said that I would have loved to have been given the opportunity to try her first...Then she said, "OK, I'd better beat them with the options that I can offer. Let's see what we're talking about here."

Here's her reaction when I expressed my desire to carry a pregnancy:
- "you're definitely young. Who would want to maintain the privilege of going into labor at all cost..."

It is interesting how much doctors trust other medical center's labs.
"well, I really want to have our pathologist look at the slides. I will work off of their report"

She looked at the original Harvard report as well who indicated a slightly different type of malignancy, one that has an even higher rate of recurrence and that is very unstable. She was worried about that.

"Also, I want to discuss this at our tumor board (YAY! Another one!!), as this is a complex case and a lot is at stake. I will also go back to articles I have read about this type of tumor, there aren't that many but hopefully, I'll find some data I can use"

Anyway, I will spare you the details of a full exam (apparently, a breast exam is necessary when you come in for cervical cancer...) and offer the conclusions of this visit.

- My next appointment is in two weeks, right after the tumor board meets. It's a day when this Dr. usually doesn't see patients.
- This type of tumor never arises in the cervix, in the few rare cases of Mullerian Mixed Tumor (is this another name for it???), it arises in the uterus. So chances that this is also in the uterus are extremely high in her opinion
- A hysterectomy will be the only solution she will feel completely comfortable with
- Post-hysterectomy, she will want regular MRI to monitor the ovaries and the rest of the reproductive tract.
- She doesn't believe that the lymph nodes need to be removed at this stage (with the trachelectomy) since it is early stages. Maybe with the hysterectomy if it is done later.
- A trachelectomy now is betting that the tumor will behave like the slides suggest it would (eg, grow slowly again over the next year or so), but she said that it's a very uncommon tumor at a very unusual location and I might not fit the "general" population profile, so data might not be so useful for me
- She guessed (right) that most doctors can't give me certainty, even with a hysterectomy. She said that's because of the nature of the tumor.
- It can be "pesty" and often recurs
- she's confident that the cancer can be treated at this early stage. She said that with GYN cancers, before they spread, they have nearly 100% cure rate because they are operable. With sarcoma it's not 100% but it's above 50.
In my case, they won't remove the ovaries so there's a small chance that some cancer cells will be left hence the monitoring but she feels pretty good about that. (eg that it will be caught early enough if it develops there and will be treatable). Given the chances, she doesn't want to remove my ability to have biological children on the off chance that there's something there. She doesn't believe it's justified (which I was very pleased to hear as you can imagine!)
- There's a 70% success rate in getting pregnancy after a trachelectomy but very few will reach full-term and not everyone will pass the 32 week point...
So leaving the uterus in does not guarantee a successful pregnancy and a cute baby (whereas, removing it does guarantee no pregnancy at all :))
- Doing nothing is not an option. There's enough cancer cells left in the cervix to give me a lot of trouble. So a trachelectomy is the very minimum I asked what would happen if I decided to wait before I complete a pregnancy before doing a trachelectomy and she replied: "you'd die. your call. Oh and I'd look ridiculous because I'll have to beg you to allow me to convince you that at the very least you need a trachelectomy"

After I left, they gave me a sheet to hand out to the check out person. It's a diagnosis sheet for my charts. It says

"Comprehensive examination"
"Cervical/Uterine malignancy"
and next to "medical decision" it had "highly complex"

Note that the complexity of the decision is in no way related to survival rates.
My case is not an urgent case of phase IV cancer. However, in some more serious cases, they may not hesitate about what to do.

Lol :)

***********************
Oncologist #3 was really upset at the fact that I didn't get an appointment the first time around. "I know your OB/GYN - very well and if she refers a patient to me I want to be available for that person"

She asked for more detail but I replied that I didn't really want to get anyone in trouble so that it was better to leave it at that. We are now talking which is the important thing.

After we resolved the medical matters - that is did not resolve the situation at all - the Dr came back with the Practice Manager.
She said that even though I didn't want to get anyone into any kind of trouble, she would really appreciate if I could work with her to make sure it wouldn't happen again."

So the manager and I had a little friendly chat that sounded like a police interview. She wrote down all my answers into a notebook.
"When was the first time you called?"
"How many times did you call? how many times/day?"
"which number did you call?"
- the one with the voicemail that said, you have reached the line for Dr.... -
"How long was it after we returned your call?"
- no one returned my calls -
"So how did you get this appointment today?"
- through a friend's sister who works here -
etc...

Before she left, the manager gave me her card and said: "Here's my phone number and my email address. If you ever have any problems getting appointments at the cancer center, call me direct."

Then, Oncologist #3's practice assistant and who called/emailed me to make this appointment came in, gave me her card with her direct line and said: "Call me whenever you need to see Oncologist #3, I will personally make sure that you get on her schedule".

Well, well, well...I feel super important now...

Egg Retrieval and Recap for New Readers

2007-04-02T10:20:00.000-07:00

Welcome new Alien fans

You can browse through the blog to get more background on what's been happening but here's in a nutshell the timeline of recent events PRIOR to what's on the blog.

I had been experiencing irregular bleeding and had seen my OB/GYN about 5 times at regular intervals about that. First, it was thought to be an infection so I was treated for that (looked inflammed, kept bleeding as soon as they would touch it). We did a special PAP test and it came back negative. Etc...Toward the end, it was so bad that when I was asked "when was the first day of your last period", I couldn't answer because I couldn't tell the difference between normal and abnormal bleeding...

Finally, since nothing seemed to work (and it could be a million thing), the OB/GYN ordered an ultrasound (months after my first visit). The ultrasound did show a mass (pretty big by polyp standard, ~ 5 cm) in the uterus (bottom, top of cervix).
The day of the ultrasound, I get a call from my OB/GYN who says: we think that we have found the cause of your bleeding. Looks like it's a gigantic polyp. So if we remove it we should be fine.

Polyp is removed. Right after the surgery I get a call from my OB/GYN.
"I removed that small mass in the uterus but I found something totally strange too. It's huge and I have never seen anything like it before. I took a sample and sent it to the pathology lab. Hopefully, they'll be able to tell us what it is. We should have the results in two weeks"

2 weeks later: no results available when I go for my post-op check up. OB/GYN checks with the lab and calls me with the weirdest story of all.
- "OK, so the lab isn't 100% sure of what it is, so they sent it to an expert at Harvard Med School for a second opinion"
- "and what are the options they are hesitating between?"
- "No, it's so rare that I really don't think that it is really possible so let's not talk about this"
- "I insist" - it took me three phone calls to get her to say
- "OK, they are hesitating between a benign tumor or a malignant sarcoma"
- "And why is it so difficult to tell?"
-"Well, sarcomas are really rare, start in the gland but half of the tumor is benign and the other half is very malignant so they are often mis-diagnosed is the sample contains the benign portion"

2 days later, I learn that the Boston specialist of soft tissue tumors has sent a report back "cancer" - he also chose that time to disappear for 2 weeks on vacation and was not available for comments.

The city lab still didn't want to believe it (50% of the people there thought that it was sarcoma and 50% thought that it was benign) so they also send it to another local hospital that says "we don't know". The city lab puts "cancer" in the report. I actually had to speak directly with the MD heading up the lab because I still couldn't get a response. This took over a month...

Meanwhile, I am wondering whether I have cancer or nothing :)

My OB/GYN calls after I got these results:
- "OK, so looks like it's cancer even though there's no consensus. However, everyone thinks that it should be removed so let's go ahead and schedule that operation. And let's do a CT-Scan/MRI (better for soft-tissue) including one with contrast prior to the surgery to make sure that we remove it all"
- A few days later, I am put on emergency schedule for an MRI at UCSF. I stayed in that stupid machine for TWO hours (with an IV in my arm for the contrast solution). My legs were so numb after that!
- I get a call that same evening from the doctor:
"- I can't just go ahead and remove this. This is all over your cervix, up the cervical canal into the uterus. If we remove this, your cervix has to go and potentially some of your uterus. I am going to refer you to a GYN oncologist. He can see you next week."

Oncologist #1 reads the two reports that say cancer and tells me "I am not sure it is cancer. Or if it is it's probably so early that we can just wait and see, and manage the growth with some drugs. Let's do a scan every month and see how fast this thing grows"

Next scan: "Mass identified on the inside of the cervix, marginally smaller than the original mass after partial removal"
Exam after the result of the scan and comment from the oncologist #1: "Hmmm, I can feel the tumor with my fingers, it's probably about golf ball size. It has grown much faster than I had anticipated. Let's schedule a conization of the cervix, which is a partial removal of the cervix and see if I can get it out"

My OB/GYN doesn't understand how that can work...

Meanwhile, my"case" is being discussed at various tumor boards. They all say it's cancer.

I finally have the operation (this is one of the first posts on this blog) -
- a) it is cancer
- b) it is super rare and they have no clue
- c) it is early stages but they aren't sure about how this will develop since there's no data and apparently it can mutate into all sorts of monsters
- d) margins were not clear (eg still cancer cells in there)
- e) there's only one solution: a hysterectomy potentially with chemo/radiation

****************************

This !$)^#%^)&*@#)( cat has peed on my spinnaker bag.

OK, took another of those round pills, got myself a nice filling little dinner and I am drinking a ton of water. Most importantly, I will take what I will sorely be missing for a couple of weeks: a HOT BATH!!

*****************************

I just went over that consent document for egg freezing. Basically, this is so rarely done that it is still a research study. They accept only two new people into this study every month and give priority to cancer patients wishing to preserve fertility. Also true of ovarian tissue (if they ever have to remove them) and because only 2 pregnancies have worked with this solution, the storage is free for this (for embryos/oocytes, it's about $350/yr)

So by signing this form I am consenting to be part of this research study.

It is also specified that if at any time, research shows that there is a risk in keeping those eggs (probably to the future baby I would think), then they will notify participants in the research.

Whenever something like this happens (or when I turn 50), I can choose to have the eggs donated to research or discarded. I opted for the former. Might as well be useful to someone else!

So I was already asked to be a research case for the tumor itself and now I have just enlisted into a research program for fertility preservation with cryo-eggs :) Cool!

*********************************

Assuming that one needs 2 eggs and 250g of flour (+ some sugar, oil, etc...) to make some wonderful crepes for 8 people, how many people can we feed on my SEVEN eggs????

Everything went well at the retrieval procedure. Feeling a little groggy still :) I spoke with the doctor and she doesn't believe that the quality of the eggs is good enough to freeze them as eggs. So they will all be frozen as embryos.

Which simplifies greatly the problem stated above!!! None!!!!

Mystery Oncologist ;-)

2007-04-01T11:07:00.000-07:00

So...the reason why I switched oncologist is because I had a hard time trusting what oncologist #1 was telling me. Here are some examples.

a) "I don't believe that there is enough information to say that this is cancer" he says looking at the pathology report that states "sarcoma". He finally agreed that this was cancer...
b) "It's just an outpatient procedure" - and the nurses tell me that he has booked a room for 2 days for me...so clearly my overnight stay was planned ahead
c) "I got all the tumor out" - later the Stanford oncologist says "there was no clear margin on your last surgery which means that the tumor has not been removed, there are still tons of cancer cells left in there. And in any case, the MRI cleary shows that the cancer is all the way up the cervical canal, so no, the bulk of the tumor may be out, but we need to remove a lot more before we can say it's out"
d) "I am going to have to remove your cervix and your lymph nodes" - oncologist #2 is saying "I want to do this trachelectomy but let's try to keep your lymph nodes until the hysterectomy. It should definitely help w/ fertility. Right now, there's 1-8% that they are affected. We will monitor closely and see if we need to change this"

Weird huh?

*********************
I got an email from oncologist #2

"There are many people doing gene profiling of tumors in the research setting here including myself. Dr. so and so has a particular interest in sarcomas and if we have enough tumor tissue to save I can give him some. Not sure what we will do with the information but it is certainly potentially useful to have.
Also I would want to wait at least 3 weeks after your retrieval procedure to do your surgery."

**********************

Hey, I don't know about that last shot. It's super sore, feels hard and looks swollen. I might call in to double check and make sure this is normal. I seem to support the antibiotic pretty well which is good news (I can certainly do without nausea!)

OK, I checked with the nurse and the soreness, hard on touch, swelling and redness is not uncommon for this type of shot. Apparently it has some proteins in it and that's what's causing this discomfort. No big deal.

Also, those hormones put your weight completely out of whack. I am eating less than usual and I think that I have put on some weight. I talked with an aunt of mine who had this procedure done a few years back. She also put on a lot of weight during the treatment for no apparent reason so all hormonal driven and had to go on a diet afterwards. The "no exercise" bit is not very helpful there!!!

Fortunately, this is ending soon!!! Harvest is tomorrow!

Poultry

2007-03-31T13:28:00.000-07:00

Hello Sci-Fi fans,

I feel like a chicken. There are people that count my eggs every day.
And I am not even a healthy organic chicken. I get a ton of hormones.

And I need to hire a secretary to manage my medical appointments. This is getting overwhelming.

After over a month of radio silence, thanks to "Tommy", I got a spontaneous call and two emails from the other doctor's office at the city hospital.
(Remember, after one week of daily calls with no response, I turned to the other local center) . Apparently they had some voicemail issues (ahem...).
In any case, I have an appt with that doctor at 1pm on Friday. Since it is such an unusual tumor, I figured that it wouldn't hurt to get yet another opinion. And since, now they have expressed the desire to "meet with me", it would be plain rude to refuse :)

I also met with Oncologist #1 (the oncologist who has a great medical sense of humor and poor drawing skills). I told him that I felt more comfortable in the care of oncologist #2, as I felt that I could be more open with a female physician for GYN issues. He said that there would be no problem, that it was a great choice and a very good doctor. He asked me to stay in touch, he welcome me back to his practice at any time (even if it is just monitoring after surgery/treatment) and said that he would be glad to remain in copy of any new development and share his opinion wwith other physicians. So nice! He told me that I was a "good patient", which I thought you'd be pleased to hear.

I also had to call my regular OB/GYN doc's office to give them the fax number of the city Cancer Center so they can fax my info over.

Other than that, I got my last shot this morning. I am going to miss those injections. I was getting really good at it. The cats were extremely curious of this new apparatus and both used to sit right in front of me, looking suspiciously as the "pointy end". Tonight, first antibiotics pill. No dairy products, no alcohol and no sun exposure.

Fresh from the REI clinic:
"Fertility Preservation

Embryo freezing, egg freezing and ovarian tissue freezing are fertility options being offered the patients undergoing cancer therapy. In the face of a disease like cancer, it is easy to lose the will to fight, especially when realizing that the hope of having children might not be possible."

My fertility doctor always has a smile on her face! It's so nice! And the nurses at the clinic are awesome. I think that they do most of the work. I see the doctors for about 5 min and interact with the nurses for everything else.

Oh and to end on a good note. I have now told all my friends but family friends (because they could tell my family, and I want to break the news myself, like a big girl). I thought that it would be very difficult to do this but not at all! Quite the opposite! I feel much better now! And everyone is so supportive! I feel so lucky and thankful to have so many GREAT friends!!!

Prepping for Egg Retrieval Day

2007-03-30T08:56:00.000-07:00

OK - the procedure is scheduled. I think that I have 6 or 8 follicles, which doesn't mean that they all contain an egg. Here's my detailed schedule leading to that...

Tonight: last dose of the stimulant
Tomorrow morning: last dose of the antagonist. Start the doxycycline with dinner (likely to make me feel nauseous. I can't have any dairy products with this, so no dairy products for a few days, and no sun exposure either apparently)
Couple of days later 9:30pm EXACTLY - take the HCG shot (I need to mix some water with some powder first).This is supposed to act as a trigger for ovulation
Day after: doxycycline morning and evening (it's a pill, so no injection). No food or drink after midnight and until the "harvest" is completed
Day of Harvest: 7:30am at clinic for prep. I need to bring a credit card for the anesthesia charges (?????) and warm socks.
Day of Harvest: 8:30am - procedure starts under anesthesia (heavy sedation)
9:00 to 9:15: procedure should be over
10:00: I should be awake
11:00 - noon: I should be ready to go home.

Then for the next two days
I must rest at home for the rest of the day, start with light food. I can shower but no bath, no douching or immersion in water until cleared by doctor. Only Tylenol allowed for pain management (cramping is very common and expected, slight bleeding and spotting also normal)
No driving for 72 hours
I must have a responsible adult with me for at least 12 hours after I come home (since I will apparently act like I am drunk - this has got to be very entertaining!!)
No intercourse and no exercise whatsoever for ~ 2 weeks
1 doxycycline pill in the afternoon and another one in the evening (nausea very likely)

I must take 1 pill of Doxycycline in the morning and one in the evening until I run out of pills.

I need to call the lab the first day of my next menstrual period so the doctor can remove the ban on douching and tampons...

*************************

A friend from work has kindly volunteered to chauffeur me down to the clinic.
Another friend has kindly offered to drive me back home and work from my cozy appartment for the rest of the day.
I will gently go to sleep with the musical sound of legalese songs as she is a lawyer.
And my sailing partner will arrive in time for the aperitif and will stay overnight.
The cats will keep me entertained all day. I know they will want wet food.

Thank you everyone. Much much appreciated

*************************

There are some conversations that I thought I would never have...Here are some quotes.

"I get to keep my uterus a little while longer!" (FM)
"I just wanted to let you know that we haven't received the sperm yet" (fertility clinic nurse)
"We will overnight ship the semen and it should get there by Tuesday. Your order number is " - Cryobank order line
"There's a $50 charge if we have to put back the sperm on the shelf on the day of shipment" - Cryobank client services
"How much semen would you like to purchase?" - Cryobank order line
"Oh, you want to freeze some eggs too? Then I need you to sign a consent form for eggs, the one you signed already is only for freezing embryos" - fertility clinic nurse
"The day after the egg retrieval procedure, we will call you to give you the cryopreservation report" - (Blade Runner or fertility clinic nurse)
"you have a nice pharmacy fridge" (Nathan)
"Meow meow neuteured meow? whaaarf whaarf" - (Hershel my cat)

Ordered Vials!

2007-03-29T09:59:00.000-07:00

This was the other profile that I liked at the Cryobank, kind a good mix between analytical and creative skills, and someone who seemed "human and real" to me. However, one of his paternal uncles was diagnosed with diabetes at age 35, so I wanted to make sure that I wasn't taking an extra risk. This guy had over 20 vials, about 6 min before the bank closed.

From an MD trained in genetics:
"Based on the information in your e-mail, his opinion is: the risk of diabetes to offspring is so small that it's not worth factoring in to a reproductive decision. His reasoning is that the type of diabetes that the paternal uncle has is different than that of the maternal grandmother. The diabetes in the uncle is genetic, and it's onset is usually preceded by exposure to a virus. While the uncles diabetes has to do with genetics, the odds that his nephew/niece's offspring will develop this type of diabetes is quite small. The diabetes in the 83 year old grandmother is not hereditary, and poses no risk at all to the offspring of her grandchild. "

*************************

I cancelled the order I placed last week (since it was insurance and the cancellation fee wasn't too bad, compared to the price of the vial ;-)) and replaced it with the architect since diabetes in this paternal uncle was identified as not being a risk.

The clinic said that they accepted up to 6 vials so I ordered the max just because I want to max the chances of this cycle working, so if 1 or several vials turn out to be unusable, there will be som eother options. Everything that's unused this time around can stay frozen...

I didn't want to purchase extra vials since this is really an insurance policy (plan W) - if I did want to have another insemination cycle (as I would use fresh eggs), I will probably want to select another donor at that time. Hopefully, there will be plenty of time...Even if it happens after the trachelectomy, I think that I will have to wait for 2-3 months. Definitely more time than 2 days. And if I can't find anything better, since the donor that I have isn't retired from the program, I could try to order some more later on.

Telling My Team At Work

2007-03-28T12:34:00.000-07:00

I decided that it was time to tell my team at work as I didn't want them to feel that I was unresponsive. Here the bulk of the message.

"Hey gang,

Some of you may be wondering if I have taken up a new habit of going on strike and not telling anyone about it.
Fret not. And I am not contemplating the 35-hr French working week either.

I was diagnosed a few months ago with a rare form of cervical/uterine cancer. Rare in that, this type of cancer has never been found in that area of the human body. And rare because, this type of cancer represents less than 1% of all cancers, and the soft tissue form is even rarer. So doctors have very little data to work with and most oncologists have never come across this type of cancer in their lifetime. It took a national specialist at Harvard Med School to find out what the problem was.
Fortunately, for my treatment, I picked a local specialist who also happens to speak French fluently. I am in very good hands!

I have a soft tissue adenosarcoma of the uterus.

If you want to find out more about it, feel free to read up:
http://www.sarcomaalliance.com/master.html?ArticleId=90
http://sarcomaawareness.com/info.htm

Apparently, it strikes at random, there is no known genetic or hormonal cause.

Over the next few weeks/months, I will have to follow some treatment, undergo surgery and make some important life decisions."

Everyone has reacted in a very supportive manner and I am glad that I have told them. I feel much better that things are out in the open.

On the "Do-It-Yourself Clinic" front, I have now started the second type of injection in the morning. This is an antagonist which prevents early ovulation. This one is a bit painful, but it lasts for a few seconds. Given the speed at which my brain processes information, it's over by the time I consciously decides I have a sore tummy :) I still take the stimulating drug through injection in the evening.

Fertility Treatment Update...

2007-03-28T12:32:00.001-07:00

Hello dear environmental fans,

This is an update live from the "Stanford baby zoo" as we are trying the delicate operation to rescue a few eggs from an endangered species: FM's reproductive tract.

Today's scan showed that FM's response isn't as great as expected for someone her age and her hormonal levels. So the dose of 450 will be maintained to boost the response (that's the bedtime injection), and the second injection will be started tomorrow (that's a wake up call injection).
However, follicles could be seen in each ovary (2 big ones and a small one in the right one, and 2 big ones and 3 small ones in the left one).

Paperwork is being faxed back and forth to the Cryo Banks for the "droid" order.

Things feel a little rushed but under control...

Oprah

******************

I have just talked to my regular OB. She said that she has a lot of experience with patients that have had a circlage and dealt with only one patient that had a trachelectomy and a circlage (which will be my case).

However, she said that loads can be done to monitor the risk of early labor and miscarriage. I will be super monitored but she could take care of this pregnancy in her practice. She said that I might have to be on bed rest but it's not 100% certain. It will depend on how the pregnancy goes. It could be a fairly normal pregnancy.

Then, she would schedule a C-section, because I wouldn't be able to go into labor (without a ton of complication) - the C-section itself should be a routine one so no worries there. The trachelectomy doesn't make it any more complicated than a regular C-section.

So this is very good news...Hopefully the cervix (well, whatever's left of it) will heal OK so that getting pregnant won't be an issue either!

********************

OK, so a bit of drama going on here...I am ready to order...I will go for the artist...His profile feels warm and human.

I have received a call from the REI clinic saying that they have faxed over the authorization to the Cryobank.
I called the Cryobank but they haven't received this fax.
People at the REI clinic are now gone for the day...so I can't open an account and place an order...

The cryobank is open on Saturdays - and folks at the REI clinic to check messages in the morning on weekends, so hopefully, I can get this done tomorrow morning!

The cryobank closes in an hr (this is a late post from Friday), so there will hopefully still be vials available for this donor tomorrow!

******************

So these meds are a little annoying.

I feel tired, I want to sleep all day, irritable - no matter what people say or do, it just feels wrong -, sad for no apparent reason, any some obstacle seems to generate a strong urge to cry. And I have a headache.

And I will pump up the dose starting tomorrow.

This is just great :)

***********************

OK - so after about an hour of self-focused whining, largely due to the meds...I just bumped into Zorro. or Zorra.

A friend happens to have an uncle who is the founder of an IVF center, and they partner with the bank hat never returned my call. This uncle is the kindest person I have ever met. He has already spent time w/ me on the phone to educate me about the various fertility options. I will call him tomorrow and see if a one day processing/delivery (on Monday) would be an option.

I will also call back the other Cryobank as they are open tomorrow morning and see if there is a donor that I like with available specimens. Worth a try anyhow, now that the faxes have finally made it through.

Reminds me of my student years...and last minute assignments...

So I have plan B1 and B2, and I feel much better already!

I was scheduled to present at an INSEAD event tonight. I have managed to find a replacement so I am off the hook. I don't think that this is the right time for me to face 100 MBAs, or would-be MBAs given that I look like a zombie right now (and frankly, I don't think that the school would want this either!!)

I will keep everyone posted.

A little INSEAD refresher course ;-)

2007-03-23T10:21:00.000-07:00

I am still getting e-mails from INSEADers, applicants, etc...and I love taking the time to answer them. Just in case there are people that are coming over from the INSEAD blog, someone recently asked me about recommendations for the interview. Thought I could interject this here.
(some drugs are making me drowsy so bear with me...my grammar/spelling are probably not perfect right now...)

"I would think of this process as a continuum with every part of it adding a little something. The written part of your application gives INSEAD an idea of your motivation, the result of a mature process of introspection, your ability to follow the curriculum. The "spoken" or face to face part will them an idea of
- your commitment
- culture fit
- your ability to think on your two feet (eg, your spontaneous thinking :))

The difficult question that the admission committee is trying to address is "if we admitted this candidate a) would he/she be likely to accept our offer, b) would he/she be able to meet the academic standards, c) would he/she participate in the life of campus/become a living advocate for the insead values throughout life (both professional and personal, a ton of us are involved in non-profit work)

I cannot give you questions in advance, only tip to approach the interview with a peaceful and well-prepared mind!

Be Candid And Open:
My advice #1 is to be totally candid. you don't have to agree with what your interviewer says but you need to justify what you say. If it comes from the heart, it is convincing (don't worry, people at insead have so many different background that disagreements happen all the time! In fact, it's great to be exposed to so many different perspectives).

It is also OK to share concerns, worries, questions, etc...This is a 2-way process. It's a huge investment on your part and it's a big question mark right now for you. I think that any admission committee is more likely to think that you'd accept an offer if you have given it due consideration and if your concerns and questions have been addressed. Consider "My objectives are so and so, INSEAD seems to be spot on to help me realize those goals. However, I have heard that it is a very intense program and I would also like to do some extra-curriculum activities. How difficult is it at INSEAD?" or "it's a big thing for us to move a few thousand miles and I am worried that my partner would be bored. What type of activities exist for partners?". You need not have completely made up your mind at the interview. You must be strongly motivated otherwise you are wasting everybody's time, including yours but no one is excepting you to sign on the spot.

Be self-aware, not Superman
We have all made mistakes and we will continue to do so. Recognize it and be open about those. Being aware of one's limitation is critical to success because then you can make choices that take you in the direction of your best abilities, surround yourself/deal with areas where you're not so strong and not make the same mistake twice. Anything else is self-deception and this goes again being candid...A true leader is someone who can say "I made a mistake, I will now take responsibility for this mistake and fix things up". Of course this is a slippery slope because you want the other person to think that you're a superstar, so ideally you ahve learned from this mistake and did something wonderful with it afterwards.

Read up on INSEAD
Investing time on researching the program is probably the best evidence of your motivation (because time is so precious). It really means that you are curious about it, that it appeals to you in some way. If you are not asked specific questions about it, volunteer your knowledge. It will also reveal the areas that have retained your attention, thus that seem to match your interests/personality, another hint at the type of motivation you display. If you are asked about other programs, be honest. Some people are so certain that they apply to only one, some would like to get to know more than one because they aren't so sure. Just make sure that you justify anything you say and offer a coherent picture.

Build a relationship with your interviewer. Imagine that this person must decide: what would this candidate do in my working group, in my class. Would I learn from this person? Would I enjoy having this person in my group? Do I see an opportunity for this person to be changed through an MBA? (one has to be open to change for that to happen). note that I am not talking about subjective things here (although we are all human so I don't think that any selection process can be totally objective without removing all human input...). I didn't LIKE everyone in my promotion (most of them though :)) in that I am not best friends with everyone (it's hard!) but I ADMIRED, RESPECTED all of them. And I have learned from every single person I have met. And I would enjoy working with all of them.

Accept the questions (even if they sound weird or take you to places you are not familiiar with). Life is not about controlling everything and everybody. It's about being humble enough to recognize that it is impossible and be adaptable enough to deal with change successfully.

Be clear/succinct in your communication. Help the interviewer follow your line of thoughts.

Make it a mini-INSEAD experience. So enjoy the ride! INSEAD will be challenging, you won't have all the answers, you may be confused at times but like the rest of us, you will probably say that it is the best year of your life..."

Getting Better At It

2007-03-23T09:45:00.001-07:00

Please note the depth of thinking...

First Filter Criteria:
Height: > 5.7 (taller than I am)
Weight: that looks healthy for a given height so I use this to sort only (150 - 200)
Eye color: blue - my Dad had blue eyes which means that I have some blue eye genes somewhere...so 50% chances to get a child with my Dad's eyes
Color hair: brown, auburn, light brown, so that it is similar to mine (assuming I would be a single mom having to use this embryo)
Hair: wavy (preferred), straight - similar to what's in the family
Rhesus: positive. For women, a negative Rhesus can be a problem. I am positive but this is a dominant gene so I don't know if I have a recessive negative gene too. So just in case...
Skin tone: medium (so that it looks a bit like mine)
No corrective lenses (might as well)
OK GPAs (although frankly, not sure how good a "smarts" indicator that is)
Some artistic interests (hobby or talents) if possible
Seems to lead a healthy lifestyle

Not very elaborate as you can see...

Roughly 16 with one bank and 9 with the other. Cutting down further based on

- tested positive for some nasty virus (I don't know if I was exposed so wanting to take no risk)
- Pregnancy reported - eg it has worked with some other women
- Sample listed as available (as opposed to None None None)

This leaves me with
3 with Fairfax and 3 with Cali Cryo. Professions and profiles look OK. I feel like I want to order a bit more info. I will first call and make sure that there's availability and order further info for those.

Getting there...

Donor Selection

2007-03-22T09:25:00.001-07:00

Boy, this has got to be the most difficult purchase decision I have ever made. And I have 4 days to do it...

I first have to select a provider...The two that REI often works with are:
http://www.fairfaxcryobank.com/
http://www.cryobank.com/

But how does one select a sperm donor??? How much of what makes the donor is hereditary? Their artistic talent? Their hobbies?

And I need to decide by Monday...

Ongoing Fertility Treatment

2007-03-21T10:45:00.000-07:00

I was instructed to call the REI clinic on Day 1 of my menstrual cycle which I did. That was Saturday. The nurse that I had on the phone told me that they have lost my charts.

Great. I am very confident that they can take care of my situation.

They have since found the charts again and can follow the doctor's plan.

**************

Mission Accomplished. Last Night. 11:20pm. Nothing to report. I can
- Put cartridge into pen
- Swab area to inject with alcohol
- Swab end of pen and end of cartridge with alcohol
- Remove outer cap of needle
- Check that pen is armed correctly (no space between lever and cartridge)
- Remove inner cap of needle
- Gently push until a drop of liquid drug can be seen at the tip of the needle
- Arm pen with appropriate quantity (450 in my case)
- Inject
- Count till 5 then remove needle
- Dispose of all needle-related material into special medical waste disposal

Easy peasy

***********************
Recently, a couple more strange manifestations:
- short term memory losses
- loooooooooooooooooong nights and naps during the day

I talked to the oncologist about this and she thinks that it's just emotional fatigue since I may have had a lot of my plate recently, loads to think about and high implication decisions. She said that she wouldn't worry about it right now. The memory losses just means that my brain is giving priority fo the most urgent high impact decision and the extra sleep is just that it is taking a lot of energy and it's a natural way for my body to get this energy back.

However, definitely causing other issues at work which I may want to address.

1st Day Fertility Treatment

2007-03-20T09:45:00.000-07:00

Hello dear Alien fans,
(sorry about the delay!!!)

Today, I am officially starting my infertility treatment - this is kind of weird because as far as I know, I am not infertile...So this is supposed to work REALLY well for me...Apparently, they have managed to retrieve up to 26 eggs with some women. I hope to beat this.

I have been given a "Guide to Patient Friendly Fertility Treatment" on a DVD. You can tell I am being followed by a Silicon Valley center. Next, they will send me the URL to a webinar on "How To Become an Injection Pro in 15 min", or a "Registered Nurse in 90 days".

Anyhow, so I was asked to turn up today at 10:00 at the REI clinic which I obediently did.

First I needed some blood to be drawn to do some hormonal test (FSH = to determine ovary biological age, some more hormonal baseline, HIV and other STDs, etc...). The guy at the lab asked me which arm I wanted to use. I felt an urge to be ultra-generous and I let him choose. The winner was my left arm, which doesn't surprise me. I have always had a penchant for my left arm.

Then, I met with Dr W. for a little chat about my weekend and an ultrasound, which they do vaginally. Doesn't beat sex though and I don't want to meet the gigantic humans that can use the outsized condoms they use for the probe. Here are her comments:

"The uterus is where it is supposed to be" (Thank God!!! They didn't have to chase it all the way up the lungs!)
"Right ovary looks right, dimensions are - I can't remember, but I am sure that it was very big -"
"Left ovary looks right (hold on, I thought that we were talking about the left one now) - dimensions are - I can't remember either but I am sure that it was fine, I didn't hear the doctor screams"

After this wonderful experience, I was asked to dress up again, feel a little normal for once and go to the consultation room to chat with the nurse. Crammed in a 2x2x4 room with a larger than average nurse called Lisa, we went over various things...

1- Consent form for A, consent form for B, consent form for C, page 7 out of 10, etc...
2- My "schedule", or what I need to do explained day by day, until we reach TBD which Lisa explained as "To Be Determined". What happens then will depend on blood test and ultrasound results.
3- How to use the various syringes, needles and bottles/cartridges so that I can give myself the injections. The one takeaway is that I need to find a place in my body where I can pinch one inch of fat tissues. Shouldn't be too hard in my case, but I'd hate to be someone who doesn't qualify for this treatment because they are too thin.
4- Quality of life during the treatment. In 3 days, I will have to stop all exercise and these meds will make me feel depressed, bloated as loads of extra liquid will be generated in my lower abdomen area. I may experience headaches, severe mood swings. I most likely will experience rash and skin irritation at the injection site (you guys haven't seen the size of the needles yet - they are designed for VERY big women, definitely more than one inch of fat tissue).
Why do I need to stop all exercise and heavy lifting after day 3? Because the ovaries will swell A LOT (if this stuff works) and
- Exercise will bring blood to where it's needed for the exercise and ovaries are not high on the priority list (no? how weird). This may deprived ovaries for getting enough energy to produce a ton of follicles (which contain the eggs). We dont' want that
- The ovaries will grow abnormally big and they are attached by tiny tendons...if I were to move too much and stretch my muscles too much, they could break LOOSE!! This is both extremely painful and detrimental to fertility. Given that fertility is the whole point of this little procedure, we don't want that.
Besides, imagine the ridicule of turning up at the ER saying "Hey, I think that one of my ovaries just went for a run, last time I saw it, it was hiding under my bladder".

The nurse wanted to make sure that I understood what no exercise mean (eg no endurance exercise, nothing that will bring my heartrate above 120)
I quote
"- no running
- no biking
- no treadmill (does anyone use treadmills for anything else but running?)
- no...er...let's see what am I forgetting. As you can see, I am not that familiar with exercise..."
LOL!!!

The egg retrieval procedure is done under anesthesia (general or IV heavy sedation). Lasts ~ 30 min, through an aspiration needle and assisted by ultrasound (I want to stay awake to see this!!! Must have a phenomenal entertainment value!!). Patients must arrive 1 hr before the procedure, not have food/drinks past midnight the night before, get connected through some IV, go to dreamland for a short while and then wake up in a recovery room. After 3-4 hours, they can go home. However, someone needs to drive them home as apparently they feel drunk (ahem). No work that day and no driving for 72 hours after the procedure.

I quote from the consent form "Recipients will be administered sedation and in some cases general anesthesia. Recipients may experience mild to severe pain during the procedure. Anesthesia levels will be adjusted to manage pain levels"
Great...they will ask me every 2 min where my pain level is on a scale from zero to 10 I bet...
"Discomfort in the lower abdomen is often experienced after the procedure"

- Some side effects from hormonal treatments: ovarian cancer (bummer)
- Some side effects of anesthesia: death and brain damage (bummer)

(they are not called patients in the REI clinic, they are called "Recipients" or "Donors". Most donate money to the clinic though.)

Anyway, next step was to explain to give me a little tutorial on donor sperm. I have a list of cryobanks I can try out too, and a recommendaiton for two of them that know the REI clinic processes very well. And both of them are in California and both of them have an online catalogue.
For anyone who hasn't purchased some sperm recently, you can find the Winter Collection profiles of those anonymous dads, and if you are interested in a blind date, you can ask for a more in-depth description and a baby picture for a small $80 fee. Very cute. You can purchase one or more vials and have the samples sent over to you or directly to your fertility doc/clinic.
100% better than online dating.

So there you go -
Tonight I will start my first injection to give my ovaries a little boost. My next ultrasound and clinic appointment is on Friday at 8:15 (Eeeeeeeeeeeeeeek!!!)
Tomorrow I am meeting the clinic counsellor to make sure that I keep a perfect mind-body balance throughout all this (hey, my ovaries are supposed to swell, does this mean that my ego will be inflated too?).

I have also been referred to some maternal foetal medicine doctor to get a download on "Pregnancy after a trachelectomy". They typically manage complicated pregnancies or complications during a pregnancy. However, they are also located at the Medical Center. I may want to have someone who's a little closer to home...

Oh, Lisa, (Lisa and Terri are my nurses) just called. They have the lab results. My FSH is 12 (so what?) which is a little elevated (does this mean that I am super fertile???), so instead of using 300mg of this first drug, I now need to use 450mg (as far as the injector pen can go...)

At The Drugstore

2007-03-14T11:14:00.000-07:00

OK - I have stocked up on drugs + syringes + needles + a "pen" + a syringe disposal box + pills + injectable drugs. My fridge is full. Let's hope that no police officer will decide to visit my appt over the next few weeks. They may think that I am opening some illicit business.

I will spend a few hours at the REI clinic on Monday. I need to show up at 10:00am for
- 1st injection
- ultrasound
- injection DIY tutorial
- blood tests
- session on pregnancy after a trachelectomy
- introduction to the "plan" or what will happen over the next few weeks
- tutorial on "how to select a Daddy"
+ one more test but I forgot what it was

My counselling session is on Tuesday

I also need to call in to schedule the surgery/next appt with oncologist.

I was given a direct line to the oncologist office, "back number" to the REI clinic, pager number for the pharmacy just in case I have questions about the ton of meds I just bought and pager number for my "nurse" at the REI clinic. She works mainly for this fertility doctor, Dr. W. so mostly with cancer patients.

So long!

Professor Daniel Dargent

2007-03-14T11:12:00.001-07:00

Is the Professor that invented the Trachelectomy. He died in 2005.

http://www.usc.edu/hsc/info/pr/ccr/02winter/times.html

Oncologist #2 is a big fan of this guy

More About Cancer(s)

2007-03-13T08:44:00.001-07:00

From Cancer.Suite101

"These abnormal populations exhibiting excessive growth often occur due to mutations that block apoptosis or enhance cell proliferation. In addition, these populations of cells are prone to further mutations, which make them increasingly abnormal and unstable. For example, further mutations may confer additional loss of growth control or an enhanced ability to invade local tissues or to metastasize to distant sites.

It should be remembered that not all tumours are cancerous. Benign tumours lack the ability to spread by invasion into local areas or by metastasizing to distant parts of the body. As a result they are often not life threatening. In contrast, a malignant tumour can spread by both invasion and metastasis. It is these latter tumors that are correctly called cancer. Their ability to spread often poses significant health consequences as they disrupt not only local structures but also distant tissues and organs, often leading to impaired function."

And soft tissue sarcomas first spread by invasion then by metastasis when they become more invasive. My doctor warned me about further mutations that may make the tumor more aggressive (apparently, a lot of sarcomas later develop an overgrowth which then multiplies the speed at which they spread...So I think that the trachelectomy is a safe choice...And wait as long as I possibly can before the hysterectomy.

On cervical cancer and pregnancy

2007-03-13T08:43:00.000-07:00

Good resource from our friends the Brits

http://www.cancerhelp.org.uk/help/default.asp?page=2776

More from Oncologist #2 and Next Steps

2007-03-12T17:46:00.000-07:00

OK - so Oncologist #2 just called - I didn't get everything right yesterday ;-)

Still I get to keep my uterus a little while longer. Will post this on the blog too...

- Sarcoma before they become invasive will not spread through lymph nodes, after they become invasive, they do like any other type of cancer. Before they become invasive, they just do the jumping thing, so there is a small chance that the uterus and lymph nodes have some cells in them, much higher chances in the uterus. However, if it is still early, they will just jump somewhere from there and grow a tumor (over the next 1-5yrs). Timing is still unknown so I don't know how long I will get to keep my uterus. I will have other discussions about this with the oncologist but she was much more positive about the timeline after talking to the tumor board.
- So definitely, leaving the cervix in is probably not a good idea since it's full of cancer...but my oncologist is definitely positive about letting me become pregnant before performing a hysterectomy and she's more positive about me keeping my ovaries. She thinks that chances that they are affected now are probably actually 1%, and it might go up to 8-10% if I wait with the uterus in. However, she sounded really encouraging about the fact that I was so unbelievably lucky with timing that it will probably be OK (remember, the usual treatment for this type of cancer is radical hysterectomy + removal of tubes + ovaries + lymph nodes in the pelvis). Only in some really early cases, do they leave the ovaries in place.

- They still can't believe that I was experiencing symptoms (bleeding), in general, they start at much later stages, which is why initially, she panicked when she heard that the other oncologist was fine with leaving the uterus in for a little while longer.

- I am starting a cycle (harvesting/freezing eggs/embryos) just as an insurance policy. The oncologist thinks it's a good idea anyhow since this cancer is so rare that there might be things it will do that no one is expecting, and there is no data about this on the cervix (only in other parts of the body).

- It is not hormone-sensitive so pregnancy will not increase the risk of cancer spreading

- There is a special program for women with cancer that have to undergo surgery to get access to fertility treatments at much lower rates (as opposed to 1,000s of $$)
- I need to talk to a psychologist at the fertility clinic, apparently usual procedure for all women in my case
- They are scheduling an appt with the director of the fertility clinic (an internationally renowned expert!) to discuss pregnancy after trachelectomy
- Need to go to the REI clinic so they can start medication and I need to learn how to give myself some shots. Will be a lot of ultrasounds in the next few weeks. Surgery will happen afterwards (for the cervix portion)

Onward and forward!

News from the tumor board!!

2007-03-10T07:28:00.000-08:00

Today is Christmas. No kidding. I just spoke with the oncologist #2. They have looked at all the information and discussed my case at length at the Tumor Board (the head of the cancer center, my oncologist, some other guy and one of the top oncologists in the country are on this board) and there is a consensus!!! (by the way, the lead guy had seen the first sample when it was sent to the Stanford Lab).

- this type of cancer is rare, especially arising in the cervix/uterus, so most of the data that they can work with will be with cancers of the same type in other parts of the body.
- the tumor must be really young - so closer to the 5 yr mark - and in this case, a complete resection may be enough to contend the cancer for quite a while. After a while, it will most likely return in the same area and grow from there. When is hard to tell
- Sarcomas at this stage in general don't typically spread through microscopic blood vessels or lymph nodes so if she performs a radical trachelectomy (removal of the cervix), she thinks that she will leave the lymph nodes in, as well as the blood vessels around the cervix. She said that this would really help with fertility. Note that the other oncologist wanted to remove the lymph nodes to double check. She really said that there was no data out there to support this. If I didn't want to get pregnant, she probably would have but it has other side effects (swollen legs, etc...) which I might as well try to avoid.
- Sarcomas in general spread by invading tissue after tissue first, not through metastasis (only when they are more advanced).
- I am really lucky that they have found this so early. Most people would not have had any symptoms at this stage (yeah, I am a really cool person...)
- I DO NOT NEED A RADICAL HYSTERECTOMY AT THIS STAGE - IT IS SAFE TO WAIT
- I will need to be monitored super closely as there is a very high risk that this cancer will come back, even with resection, at least for the next 2-5 years, and there is a risk that the uterus has some cancer cells in it. However, because the cancer is early, she doesn't believe that it requires a hysterectomy and she believes that it will behave like a nice healthy uterus during a pregnancy, and bravely meets its OKR.
- The trachelectomy (removal of the cervix) was apparently invented by a French doctor (of course!!!) who died 2 years ago and who was a pioneer in preserving fertility in women with cancer.
- The oncologist can't give me a percentage change or a timeline for when I would need a hysterectomy. She said that the more I waited the more I would run the risk of having a cancer grow during a pregnancy. She feels than one pregnancy (eg, started as soon as possible) will be OK for sure. I asked if I could wait a little longer (for anyone who's not in the know, I don't have a partner right now) and that is something she can't answer. Maybe, Maybe not. The other oncologist told me: "don't wait for 5 years, we're really talking 1 yr or so here" but then he also wanted to remove the lymph nodes...and make it harder for me to bear a child...

Where is this taking us?

- Oncologist is fine with me harvesting some eggs and freezing eggs/embryos this next cycle. She said that she really doesn't think that she would have to remove the ovaries at this stage but she understands that I want to keep all options open...
- Option 1: Hysterectomy is still open if I want to do this (then no worries ever again), she feels comfortable not removing the ovaries. However, this is not the only option!!!!!
- Option 2: Remove the cervix, leave the lymph nodes in, monitor and get pregnant :)
- Option 3: Do nothing and wait and try to have a baby as soon as possible WITH THE CERVIX still in place. There are cancer cells there, so she said that this was great from a fertility standpoint but there was a high chance of the cancer growing back in that area and of the need of a procedure prior to the end of the pregnancy. The cervix will have to go for sure fairly soon. She does not recommend this approach.
- Option 4: remove another portion of the cervix but try to leave as much in place as possible. However, if they still find cancer cells, they will have to do another surgery, then yet another one. The MRI seems to indicate that this tumor is pretty much all over the place. Pros: only the minimum will be removed from the uterus (for now at least), Cons: risk of having to go through multiple general anesthesia procedures in a short amount of time, - and delay a pregnancy...

So I even end up with more choices than before. She said that there was a small chance that if they remove the cervix entirely and if there are no cancer cells in the uterus, it might grow back so late in life that removing the uterus won't be an issue for me...it's small but exists. She also said that since they don't really know much about this type of cancer, it could grow back, mutate into some sort of monster tumor and devor the whole thing in 12 months. But then, they would catch this.

So next steps are:
- Appt with the fertility doctor to discuss the risk of pregnancies without a cervix (will probably be my preferred option from a safety standpoint)
- Appt with regular OB to get her view on that as well
- Appt with oncologist after I discuss with those two docs, so in the next 2-3 weeks

I talked to my manager because I couldn't concentrate at work. He said that it was OK if it was going to be only a few days. I think that I already feel much better and that I can make this decision pretty soon (there's less urgency too because of the harvesting cycle). So I will probably need a couple of days to digest all this and then back in business!!!!

The trees looks particularly beautiful around campus today, and my cats have to be the most majestic of all the animal reign. Even my blackberry looks kind of attractive right now.

Good Old Technology

2007-03-09T09:44:00.000-08:00

Here's how things have progressed since my last meeting with the oncologist.

Oncologist calls on Tuesday morning
"so were you able to pick up the CD-ROM with the scan images and bring it down?"
FM - "er, no, was I supposed to? No one ever told me anything about this, I guess I can go now"
Oncologist: "OK - great, I need them by midmorning tomorrow so we can discuss them at tumor board"
Tuesday 11:30AM: FM calls regular OB office to ask who has a copy of these images and leave a message indicating that I need to pick up a CD
Tuesday 11:50: OB office calls saying that they called the University Hospital library and that they will mail me a copy ASAP. FM explaining that this copy needs to be at Stanford tomorrow morning so that this won't work.
Tuesday 11:55: FM leaving a message at the University Hospital library
Tuesday 12:10: University Hospital library calling, saying that they haven't mailed it and that they will call me when I can go pick it up, their CD burner is acting up and they can't get anything through
Tuesday 3:20: University Hospital library calls and says that CD is ready
Tuesday 3:45: FM picks up the CD
Tuesday 8:00: Colleague picks up CD at FM's place
Wednesday sometime in the morning. Colleague delivers CD at Oncologist #2's office...

Sarcoma Awareness Foundation

2007-03-08T15:47:00.001-08:00

"Adenosarcoma - A malignant tumor of connective and glandular tissue. This is a highly aggressive cancer. Very little is known of this sarcoma."

Bummer

from the Sarcoma Awareness Foundation: http://sarcomaawareness.com/info.htm

Update from Oncologist #2

2007-03-07T08:56:00.000-08:00

I have just received a call from oncologist #2 who pronounces my name with a perfect French accent - she then told me that she speaks fluent French and lived in France for over ten years...She has agreed to take me on as a patient (YEAH!!!). I need to drive to the other university hospital in town to get the scan results and drive them down to oncologist #2 office tomorrow morning (then drive back up for my appt with my regular OB late morning! Oh boy!)

The slides (eg, portions of my cervix) missed the last mail pick up on Friday so they should be arriving at oncologist #2 Cancer Center sometime today. They are needed for the tumor board meeting.

My new oncologist will speak to the fertility doc sometime today, but in answer to my question, she thinks that it will be safe to harvest some eggs prior to the surgery, so long as we don't miss a cycle as she cannot wait an extra month.

She also recommended that I took some time off if I could as I will need a lot of flexibility to go to appointments, ultrasounds, etc...over the next couple of weeks. I will be talking to my regular OB about that. I'd hate to take vacation days just for that! Sounds like my whale vacation! Not super relaxing!

Anyway, all in all, good news, I can harvest some eggs prior to the surgery (whatever that surgery is) and Oncologist #2 will take care of me.

"rear-ended"

2007-03-06T11:04:00.000-08:00

The first that I catch laughing will end up in the water next time he or she sails with me.

Over the past week, I experienced rectal bleeding + a very painful bathroom experience. Of course, every single doctor that sees me right now is paranoid and I was prepared for a "we therefore must remove your left leg and scan you right ear" type treatment. Fortunately, my primary care doctor seems to be keeping a cold head and she decided to examine me before sending me to all sorts of expensive tests.

Turns out that I have a "Fissure". Love it that they use all these French names. My doc said "Fissure means a little crack". Yes thanks, I know this. Fissure is French for "a little crack". This means an open cut, fairly long and wide in size, hence the pain and the bleeding...So I need to take prescription suppositories (no laughing I said!!!) for 1-2 MONTHS to reduce the inflammation and help it heal. It should get better after that...It apparently takes forever to heal because any bowel movement re-opens the wound. She said that in my case, it will be important to make sure that any bleeding that's no cancer-related is treated as fast as possible to make sure that cancer symptoms can be picked up fast. I guess that this means that two months is "as far as possible" ;-)

I asked her what my have caused this - she said "we don't know". Brilliant. Cuts just happens naturally of course. (and no laughing please, none of my habits, even the ones I don't talk about on this blog, could have led to anything like this).

The problem with this thing is that it is really painful and since no one knows why it's there in the first place, it also comes back with some regularity. So apparently for a small number of people, the only cure is surgery. Aaaaah, now we're talking. Surgery definitely seems to be the solution to most of my problems lately.

So anyway, I'll give you an update in a couple of months or so...

Who did I just hear laugh????

Penny Size Scar

2007-03-05T09:46:00.000-08:00

Last week, a little tiny piece of flesh was artistically removed from my back. In fact, right in the middle of it. So high that I can't see and that I can't reach. This beautiful carving that requires just a tiny bit of nursing over the next week or so - eg - after a shower, once a day, it requires a little bit of desinfectant and a dressing change (thank you Tom, Rick, Aaron and Lili without whom I would have been condemned to no shower for a week (anyone working with me cannot desire this) or to walk to the nearest coffee shop and strip out in front of everyone.

The results are in and this strange-looking mass is benign! Woo hoo!

Definition

2007-03-02T13:51:00.001-08:00

Someone once told me that being able to state the problem contained 50% of the solution.

I have found an updated definition of this unwanted guest:

adenosarcoma /ad·e·no·sar·co·ma/ (-sahr-ko´mah) a mixed tumor composed of both glandular and sarcomatous elements

my attempt:
adenosarcoma of the uterus: a rare nebulously defined condition involving some undefined malignant element and a scale from zero to ten, affecting women mainly - its effects on FTM individuals have not yet been documented, despite the fact that 100% of the affected patient population aged 30-35 live in San Francisco.

I think I may finally have found a definition that holds some water:

ad·e·no·sar·co·ma, n.: A malignant tumor arising simultaneously or consecutively in mesodermal tissue and glandular epithelium.

The only problem with this one is that you now need to find definition for mesodermal and epithelium.

Side Benefits of Hysteric Tummies

2007-03-01T08:30:00.001-08:00

- cost of contraceptives greatly reduced
- cramps become a distant memory
- elimination of PMS completely
- no further worries of period starting at an inconvenient moment and producing unsightly stains on one's garments
- risk of miscarriage goes way down
- risk of accidently becoming pregnant also goes way down

REI (Reproduction Endocrinology and Fertility clinic)

2007-02-28T11:37:00.000-08:00

Hello everyone,

I had an appointment with the reproductive/infertility clinic doctor (my regular OB knows her and said that she was very good).

First I'd like to report that it was very easy to find a parking spot.

This doctor (she's the director of the women's health center there) made an excellent impression on me. She seems to be knowlegeable, understanding of how I might be feeling and also asked peripheral questions, such as "do you have any family living here as you go through this?" - which was much more human than what I got w/ my first oncologist. She hasn't had a patient with my type of cancer but she deals with patients that have uterine or cervical cancer all the time. She was very worried that I didn't have a partner to help me through this. I said that was very sorry about that and that I was thinking about putting up an ad on Craiglist.

"Fairly short, neutered female cancer patient, with a blood pressure of 120/70 and a heartrate of 60 seeks some local guy with some kind of degree and basic language skills for sperm donation and maybe more"

She was also concerned that my family was far away. I blamed it on local Real Estate prices.

She also took the best part of an hour to sit down with me, understand my condition and situation (the oncologist wrote a 3-page long report as a referral though, so she must have had a ton of info already) and patiently take me through the various options, as well as associated risks and timeline. We even talked about things that haven't been invented yet.

Our little chat started with her saying that I have seen quite a few doctors by now - I politely replied that I loved the service (they do come and check up on you every HOUR) and the food (I mean those ice chips are delicious) and that I was thinking about requesting a membership card. In fact, even if you walk 50 yard to another building at the same Medical Center, they check your blood pressure, temperature, weight and height again. I'd love to be able to gain a few extra inches over a couple of days...

Anyway...onto the lecture.

She first freaked me out by saying that when doctors perform surgery on cancer patients, they get you to sign a consent form that allows them to remove a lot more than what was initially planned if they find anything suspicious (eg if it is worse that what they initially thought). This could mean in my case, that they could remove the ovaries for instance. So here's what we talked about in chronological order.

- We need to ask the oncologist if a) it's OK to wait for ~ 3 weeks to harvest some eggs and b) if it's dangerous or not to do this. The needle that they would use for eggs would go through the cervix and the fertility doctor is worried that this might bring some of those flea-like cancer cells where we don't want them to be, eg the ovaries.

- If the oncologist says it's all fine, then we will proceed with this to keep as many options as possible. They would work as an insurance policy. If the ovaries can be conserved, then fresh eggs will be better. This means that I need a lot of blood tests, ultrasound scans, pills and I need to learn to inject some ovary stimulant myself as I will have to do this for a few days...(I expressed some concerns that I would mess things up, she replied that 21-yr old girls can manage this just fine - what's that supposed to mean????). She also recommended to use 50% frozen eggs and 50% frozen embryos.
I asked about the difference in success rate but apparently, it's partly due to the fact that very few people choose the frozen egg method, over the frozen embryo method. So there isn't a lot of data and there isn't a lot of expertise...

- After the cervix is removed (she explained to me the circlage thing, obviously had to find a French term for it) since this doesn't seem to be debatable anymore, then she said that we would have to wait for 2/3 months for the cervix to heal. Then, and assuming that the oncologist feels that it is safe, we could consider a pregnancy. She said that women have a 55% chance to get pregnant/hold a pregnancy without a cervix. Most pregnancies end up with early labor, however, in the majority of the cases, and with thorough medical care, the babies are old enough to survive in an incubator. So assuming I can get pregnant and can go through the first few months, the changes of a successful pregnancy would be high, certainly enough to justify a trial. Sarcomas, in her experience, are not hormone-sensitive so a pregnancy should not alter the risk profile of the cancer, however, obviously, time is of major concern here.
So next steps is for me to talk to the oncologist (Thursday) after she hears back from the tumor board. The fertility doctor thought that it was great that they accepted to look at my case.

Now, there are several possible complications in my case...
a) even if I chose a natural method to get pregnant, if the cervix doesn't heal right (and there's no guarantee that it will), the opening that's left will be too damaged/small to let a lot of sperm go through...makes it just a bit more challenging for those little guys to swim all the way through to the ovaries.
b) the uterus might not function properly because of cancer
c) if they use insemination, they might not be able to go through the new "opening" and reach the uterus
d) if they use IVF, they might not be able to put the embryo back in what's left of the uterus for that same reason.
and of course, she kindly reminded me that we have not done any test re: my reproductive system and there will probably be no time for a full battery of test, and it is possible that there are other problems that have not been found yet

Now if that was the case, then it would close this option since there is only so much time allowed for trial and the hysterectomy would happen faster...

- She also agreed that this cancer is so rare that she would understand why the oncologist would want to be conservative. On the other hand, if the lab really thinks that it is really early, there might be a real chance that waiting for a year would not affect negatively my prognosis. She also said that this partly explained why the oncologists had differing views. She agrees that if radiation can be avoided, it would be better from a reproductive standpoint. Chemo apparently may or may not affect the ovaries but radiation most certainly turns them into French fries (well French in my case)...She also said incidently that one of the side effect of radiation is cancer. That's hilarious!

- The question of the father is a very good question in my case. At the tender age of 1 and peanuts, my cats are a little young to assume parental responsibilities. She did talk about sperm donors (imagine putting some sperm into your shopping cart on Amazon.com...Apparently, they do offer overnight deliveries!) - and she said that if I wanted to ask a friend to be the donor, then there would be some tests which could be done while I recover from the surgery, and insemination could be used.

Now, if pregnancy is not an option but the ovaries are intact, at least for a little while, then it is possible to harvest more eggs of course, or to use fresh eggs to do IVF (that's in vitro) and a gestational carrier (eg a surrogate).

She also said that if the oncologist decided to remove the ovaries, then she would freeze them anyway. No one has invented how to get them to work outside of the human body, but hey, it could happen during my lifetime...

Then, she left me the "back number" that I need to call after I talk with the oncologist. If we go down the "harvest the eggs as an insurance policy" path, it means that we would be starting the whole cycle in ~ 1.5 weeks...

Next steps in this little saga:
- Wednesday: discussion with my OB and the renowned Tumor Board (I didn't get invited!!! But a portion of my cervix will be present, I'll ask it to take some notes for me)
- Thursday: discussion with oncologist #2 (I asked her if she would agree to take me on as a patient)

Next step with fertility doctor depends on the Thursday chat...

How do you feel about the suspense in this little story?

Ship's Medical Officer

2007-02-26T16:27:00.001-08:00

Hi -

Turns out that one of my boat's crew members is an oncologist! So I have a personal consultant :) I called her today and we talked about the situation. She started by saying that "history of the cancer", meaning previous cases, would be very helpful. When I told her the type, she corrected: "forget about the history, I can count the number of cases on my two hands..."

- She did say that getting 2-3 opinions from the doctors I had spoken to was great
- She did say that the local renowned tumor board was very good so she's glad that they have agreed to review the case
- She did confirm the "jumping" habit of sarcomas
- She did say that most sarcomas are not ERP+ (eostrogen receptive) so would not be affected by changes in hormonal levels. the biopsy should have determined this so if my doctor is offering this option, it means that the tumor is ERP- which would be expected in the case of a sarcoma.
- She did say that 1 year is a long time out and risking to leave cancer cells in the body for that long might not be such a great idea.
- She agreed that removing the lymp node (and sending them for biopsy) is a good idea
- She did say that low grade sarcomas can grow very slowly before they become a problem (1-5 years, consistent with what oncologist #1 said) but since my tumor is > 2 cm, it's hard to tell how old the tumor already is. When I said that the oncologist #2 had recommended radiation, she said that in general
=> low grade <> low grade > 2 cm, surgery + radiation often recommended
=> high grade, surgery + radiation + chemo
=> invasive -> turns into a stage IV cancer.

However, she said that every case will be different so maybe when she sees more data, the doctor will be comfortable taking a calculated risk. She also said that most sarcomas will recur within 1-5 years so the most conservative approach after treatment would be to wait for 1-5 years before starting a pregnancy. After 5 years, relapse is still possible but much rarer and a bi-yearly scan/exam should suffice. And because most sarcoma are not responsive to hormonal changes (unlike breast cancers), patients that have had sarcomas (a non uterine sarcomas) can usually get pregnant later without increasing the risk of relapse.

She also did say that chances of success in the case of a pregnancy probably don't apply to my case. If the uterus is affected by cancer, it may not function properly, so it may not stretch to accommodate a baby. Unfortunately, there will be no way of knowing to what extent its functionality has been impaired without going through a pregnancy. So this 50% number is up in the air apparently.

So she agrees that since the margins are negative, the cervix should be removed - the 50% will depend on how much of the uterus they can leave. She also agrees that there may be no visible tumor, yet aggressive cancer cells developing in the uterus, certainly not what she would leave in for 1 yr.
She also agrees that if the tumor is considered really low grade, meaning closer to the 5 yr mark than to the 1yr mark (eg chances that the cancer cells in the uterus are not yet that aggressive), if the cervix and lymph nodes are removed with no cancer cells in them (or ovaries/or radiation), then it might be possible to calculate the risk associated with waiting 1 year or so before removing the uterus. She said that given the size of the tumor (big), it could be closer to the "getting ready for a high grade boost". The size of the cancer matters a lot since the growth rate is exponential. The more cells there are in a tumor, the faster the cancer will grow, and in the case of a sarcoma, the more likely some cells will have "jumped" places, just because if there a constant x% chance for each cell to jump, this risk increases with the number of cells in the base pool. In my case, a 4cm tumor was removed but looks like all of the cervix is affected since the margins were negative so it's a little bigger than that. Sounds like there could be up to 1 billion cells in there already.

She also confirmed that the more I waited, the higher the chances of needing more radiation, chemo, ovaries removed, etc...later on. although probably really hard to estimate the actual risk.

So sounds like the discussion will focus on determining the actual grade of the tumor (eg likely rate of growth in the coming year). Once they agree on this, then a decision can be made.
Still really low grade, then a calculated risk for a year or so is possible
Unsure or high grade, then probably better to be safe rather than sorry

Have a great week!

Back to Oncologist #1

2007-02-25T19:54:00.000-08:00

Hi Anatomy friends,

I just met with my first oncologist. He's so busy that he had to find time over the weekend to meet (he offered, I didn't ask). He does regular trips to Asia so whenever he's in town, he's triple-booked. Even though he "made" time, I had about 20 min with him and I always felt like he was trying to push me out of his office...Of course, this may be only an impression. It is true that not all visits to the other Cancer Center are the same, in this case it was a new patient visit so they plan for a long time as they go over this long lecture (which as very helpful!). So decision #1 is what path I want to follow, and decision #2 is where to have this treatment.

So the good news is that the two doc are not really saying anything different, they just have proposed two different paths toward the same thing. Also note that the second oncologist I talked to wanted to have the opinion of the Pathology lab as well as the recommendation from the tumor board, and that after this, she might feel comfortable taking a greater risk, because she would feel that she could manage it (eg perhaps a stronger treatment but no difference in chances of cure - which is what my first oncologist is saying: risk of having a heavier treatment increases but he's still confident that he can manage the disease by watching it closely. He did say that there was a small risk of course in doing anything that's not a hysterectomy in the next three weeks because it is such a rare cancer). Here's what he said.

Option 1 (hysterectomy) is clearly the default treatment for uterine sarcomas. The first oncologist also said that she would feel comfortable leaving the ovaries and not do radiation after a hysterectomy because the chances were < 10% of spread to the ovaries. So in any case, this is going to happen (now or in ~ 1 yr from now, it will have to happen). And a year from now, the risk of having to do radiation (eg cancer spread to ovaries) or have to remove the ovaries is greater. The second oncologist did not say anything against this either. The hysterectomy would be performed through an abdominal incision, may require up to 4-5 days in the hospital and a slightly longer recovery time than the removal of the cervix.

Where they differ slightly is around option 2 but then not that much.

Option 2:
Oncologist #2 said that she would be OK removing only the cervix for now to conserve the top of the uterus. However, she said that she would want me to have radiation over several weeks to manage the risk. This would kill my ovaries.
Oncologist #1 also said today that he would have to remove the cervix. However, he said that to try to help save the ovaries for a while longer - or forever since they might not be affected by the cancer yet - he would remove the lymph nodes in this area through a laparoscopy. This would reduce significantly the risk of further spread and buy me time. He would also send them to the pathology lab. If cancer cells are found in the lymph nodes, the whole thing would get interrupted ASAP and he would remove the uterus and do radiation/chemo. He said that radiation had another side effect which is increased risk of cancer in another part of your body (even if they are very localized) and so he feels that saving the ovaries + avoiding this risk is worth it. He's not sure that there's a clear cut answer on that one.
So they are both aware of the risk and both have a suggestion to reduce it.
Oncologist #2 talked about a 60-70% to have a baby without a cervix. Oncologist #1 talked about a 50% chance, but he said that they can save a lot of premature babies as they put them in incubator which can raise the chances to 60-70% so it makes it worth trying. He also said that to minimize this risk, I'd have to stay in bed for a long long time...to avoid putting any down pressure on the cervix.

After the removal of the cervix, I would have to wait for ~ 3 months before getting pregnant as this would be the time needed for this area to heal. They would place permanent stitches (circlage) in lieu of a cervix to close the uterus and sutture the vagina directly to the top of the uterus. He said that this was a fairly common procedure. Delivery would have to be through a scheduled C-section. In this case, insurance would cover it because there would be a strong medical reason for this.

Both doctors said that ultimately, I would have to have a hysterectomy, there will be no way around this - the removal of the cervix will only be a temporary solution. Oncologist #1 feels that given the pathology report, he can manage the disease during a pregnancy. He also said that sarcomas don't seem to react badly to hormonal changes (Oncologist #2 also said that). However, he did recognize that there was a risk and that he would have to watch me very closely and would not hesitate to interrupt the pregnancy if anything abnormal were to pop up. He also did say that I am putting myself at increased risk for additional therapy but if I felt so strongly about carrying a baby, then I might think that it is worth it, which is why he's putting this option on the table.

He also agreed that success rates of IVF procedures are low with frozen eggs but very decent in his opinion with frozen embryos (although he could not give me a number). And this would remain an option in the future, after the hysterectomy - even if it is for a second child.

So the options with him are now:
option 1: hysterectomy (and lymph node removal just in case) + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)
option 2: removal of cervix and lymph nodes, monitoring, pregnancy ASAP and then removal of the uterus + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)

He did say that the cancer was found early (comparatively) even though the tumor was quite big which means that it probably is at least 1 yr old. He also agreed with with a tumor this size, the likelihood of having cancer cells elsewhere in the uterus are higher (Oncologist #2 also said that, that's why she wanted to do radiation). However, he feels that if the lymph nodes are intact, most likely it is still confined to the uterus and an immediate pregnancy might still be possible. He doesn't know for sure, he was clear that there was a risk and that this was not his recommended option. However, he would understand my desire to try to have a child now, and he would support it. He also said that there was a much more aggressive form of sarcomas but that the current biopsy did not reveal signs of that type. However, of course, the cancer can become more aggressive over time. Sarcomas don't turn into carcinomas but they can evolve within the universe of sarcomas and develop what is called an overgrowth (a boost of the malignant portion of the hybrid tumor) or become a combo carcinomasarcoma - there is so little data out there that it's hard to tell what will happen. (eg grow faster, the malignant potential of a cancer is the speed at which it grows and spread. All cancers ultimately grow and spread. Cancers that are too aggressive can grow faster than the time the body needs to recover in-between treatments, often this is due to genetic factors - in the case of sarcomas, there is no known genetic cause. Cancers that are not very aggressive are actually very dangerous too if they have started to spread or if they can jump places because chemotherapy is not very effective at treating them since it targets fastest growing cells, the least aggressive cancer that are non linearly invasive can grow slowly but surely... - the easiest cancer to treat fall in the middle) and he did agree that it was not a common cancer nor the easiest one to treat and that I was unbelievably lucky that it was diagnosed so early.

That's the news for today! - and it seems that co-parenting could still be an option...and the urgency is for him to know whether or not to remove the uterus or the cervix. He did say that I shouldn't wait to remove the cervix because it is still full of cancer cells.

So all in all - getting a much better idea of what's going on. Far from being an ideal situation but far from being the worst possible case.

Have a great week!

The Flea Cancer

2007-02-23T17:48:00.000-08:00

I spent a few hours this morning at a local and renowned Cancer Center, an expensive piece of real-estate with an obvious parking problem. Talking to Dr H. there was extremely helpful (finally someone who doesn't draw a uterus that looks like a lightbulb!! I could almost believe that she'd be able to recognize it in a human body)

I have learned a lot about GYN cancers this morning - there are a lot of numbers in this email. If you'd like a book with more images, please go to www.images.google.com every few minutes for a nice interlude.

The oncologist said that the most common type of uterine cancer is squamous cell cancer. This cancer invades progressively (eg, if you remove the area and the margins are clear, eg no sign of cancer, then it means that you got it all). This type of cancer can be detected by PAP tests and when detected early only requires surgery. If I had this type of cancer, she would be happy with removing only the cervix and a wait and see approach.

(do I sound like a rocket scientist?)

The second most common type of uterine cancer is adenocarcinoma - this usually originates in the glands that are located throughout the cervix. The cancer will spread around quicker than squamous but it will go from A to B to C. Because it is more aggressive in general, a hysterectomy is performed in most cases and radiation/chemo is added only if the cancer is already quite advanced. Surgery is usually enough for the great majority of cancer since this type of cancer can be detected by PAP tests.

The most rare type of cancer is sarcomas. The most rare type of sarcoma is adenosarcoma (and the ones that start in the cervix are virtually unseen). They are called mullerian adenosarcoma (that's what I have!). Let's take a look at some more numbers: Adenosarcoma is a variant of mixed mullerian tumors of the uterus. Sarcomas in the uterine cervix are rare, comprising 0.5% to 1% of all cervical malignancies. Uterine sarcomas make up 2% to 3% of malignant corpus tumors, whereas mullerian adenosarcomas are observed in 8% of uterine sarcomas. Oh and the median age for diagnosis is 37, most reported cases are for women aged 40+. In fact it is so rare, that the oncologist would also like to present my case to the center tumor board (hehe :))

Now that we are all certain that I am an extremely rare specimen, worth conserving at all cost (in fact I wonder if I shouldn't ask doctors to pay for the benefit of working on my case), here's where we can go from there.

Sarcomas are special cancer in that they touch both the glands (in cervix/uterus) and the muscle tissues (linen, and everywhere). They originate in the gland but the glands themselves tend to be benign. The sarcomatous part is much more aggresive though, and it is not uncommon for sarcomas to mutate into dual tumors (adenosarcomacarcinoma) . Also, they can "jump" places. So you can find cancer cell at the bottom of the cervix, then no cancer cells, and a few at the top of the uterus as the cancer spread. As a result, removing part of the cervix EVEN with clear margins (eg, no cancer cells for 1-2 cm around the tumor) doesn't mean that the cancer was removed. In my case, there was no clear margin (eg, cancer cells were found at the boundaries which means that there are 99% chances that there are still many cancer cells in the cervix - the latest scan didn't show clear boundaries either meaning that the cancer goes deeeply into the tissues. Upon exam, my cervix looks way too firm for being normal. So as a very minimum, this oncologist said that she would definitely remove the cervix completely.

Now, if she does this, because she would not be sure that there are no cancer cells left in the uterus, she would order radiation and possibility chemotherapy (although sarcomas are known not to respond very well to some chemo treatment, so she would always double up with radiation). She would also have me constantly monitored. So I can lose my cervix, keep my uterus and lose my ovaries. She also said that if I were to try to carry a baby with no cervix, I would have a 30-40% chance of losing the baby (eg not complete the pregnancy), and this will go up with age.

She said that the recommended treatment is hysterectomy because it is uterine cancer (eg, it could affect all the uterus for all she knows, it does not have to show visible tumors). If she does this, she would probably feel comfortable not removing the ovaries because there's only an 8% chance that they are affected (although it's the next level up). If upon biopsy, the uterus shows a lot of cancer cells, she will probably order radiation/chemo and want to remove the ovaries. To be conservative, she would recommend to remove them, which is actually the standard procedure for tumors that are bigger than 2cm (my case, was double that size and 3 after partial removal)

Now if she does this: harvesting eggs and freezing them is possible (and they stay the age they were when they were harvested) but chances to have a successful fertilization is very small. Freezing embryos has a higher chances of success but not that high (so I'd have to have quite a few in reserve...

To help me make those decisions, she has referred me to the endocrinologist/fertility doctor across the road - another expensive piece of real-estate with even less parking.

She said that there is also a slight possibility that the sarcoma has gone extra-uterine. It's small but not zero. That's because of this A to C jumping B thing. So in any case, she would want to have me monitored closely. This is also why in tumors that are bigger and higher grade sarcomas, radiation/chemo is usually recommended even after surgery.

At this stage, she believes that there is a strong chance to cure the cancer (although it could recur for example in the vagina). She needs more data but she'd say 90% with complete removal (including the ovaries). She wants the local pathologist lab to look at the slides (sample from the biopsy) to confirm the sarcoma diagnosis and make sure it's not another type of cancer.

Hormonal changes and genetics don't seem to affect sarcomas that much (they are quite happy to develop on their own apparently) but she said that there was so little to work with that no doctor will want to make a call on this. In any case, she would not recommend a pregnancy because I have a life-threatening disease and until it is cured, I might be making a decision to bring into the world an orphan. She said that definitely in a year from now, it would be super hard to tell what can happen. So she has no idea about a timeline. The tumor is pretty big and I had experienced the symptoms for several months (there are symptoms only for advanced sarcomas) -

And the reason why they are hard to detect via PAP test is because the small area of the PAP swab may contain zero cancer cell since it is a heterogenous tumor, but everything else could be affected...Biopsy of the tumor itself is the only way to diagnose this type of cancer. She did say that I was very lucky to have found the tumor "by chance" a lot of people don't find out about it until very advanced stages.

This cancer doesn't metastase as quickly as some more aggressive forms of cancer (that's good news) but as they are non linearly invasive cancers and don't respond well to some kind of chemotherapy, they are hard to treat. Also once they get to another organ, they can mutate and start to metastase quite happily, or remain undetected unless they are too advanced to be contained with surgery only. Also, they are unknown entities, little data, high mutation rate and they become more and more aggressive as they grow (ultimately spreading like all the other types of cancer). However sarcomas of the uterus that have spread outside of the uterus also have extremely poor prognosis.

So she said even with surgery, there would be no guarantee that I would be cancer free, just a high chance. She would still want me to have regular checks up every 3 to 6 months (MRI) for 2-5 years. then at least once a year.

I obviously don't know anything about sarcomas, so all of this is my understanding of today's visit...

ps: Adeno means that it starts in glands

Until next time!

Until next time!

Two Weeks Post-Op

2007-02-22T06:10:00.000-08:00

Catching up on late stuff!!!

Well, sounds like there was a little drama going on today! Experienced some "heavy bleeding" which means a completely soaked pad every half hour or so, then every hour, had to be evacuated from the boat I was racing on and transformed in a few minutes my bathroom into a slaughterhouse. Fortunately, the oncologist on call at my doc office responded to my call within 5 minutes. His expert opinion confirmed what intuition had already told us: this is a bit much and a trip to the ER would probably be quite appropriate.

All is well now - Sarah came to "supervise" the operations for a few hours and to bring some fresh supplies! We had nice little pizza dinner and watched a beautiful movie. The doc just "allowed" her to leave and I can now stay at home. Bed rest tomorrow (the cats will love it) and I am to call the doctor in the morning. If all is well then, should all be back to normal!

Airplane

2007-02-21T16:32:00.000-08:00

On a recent trip to Europe.

So there was this burning smell on the plane, a lot of running around, flight attendant saying "I know folks, I know, we're investigating", captain coming out to check and all that and then the following announcement:

"we have an unusual announcement to make. We are experiencing a small...(*silence*)...minor electrical problem, resulting in a small...(*silence*) minor fire. We have to switch off all power to the main cabin and run on emergency lighting. As we will have no power in our galleys, this means that we will be able to serve only cold and non-cooked food. We won't be able to serve you coffee or tea. Also, we will have to shut off the entertainment system"

News From Cancerland (or confirmation of diagnosis)

2007-02-21T07:26:00.000-08:00

Hi everyone,

Welcome to Cancerland where the local temperature is 37 degrees Celsius and pain levels are hovering around 1. I have just had the immense privilege to meet my oncologist again. Why am I saying privilege? Here's an overview of the decorations in his waiting room...

"Top 500 Doctor's in 1992 and 2001 - Top OBGYN oncologist"
"Top doctors as selected by his peers in 2002 and 2003"

Next to this pedigree, my resume looks like a wafer. To my credit I must say that I am developing an uncommon specialty: that of always having to face events that have a chance in 1 billion to occur. I need to buy a lottery ticket, feeling very lucky these days.

Now that we have all agreed on a standard of greatness, I will do my best to honor your expectations and share with you the minutes from my medical meeting.

The oncologist opened up the show with a metaphysical question: "Do you want the bad news or the good news?" (<= note, this is oncologist humor) In the mouth of a waiter at a local restaurant, this sentence does not quite convey the same meaning as it does in an oncologist's office. But then, faithful to my principle of rarest event specialist, I figured "in an oncologist office, the most common occurence outside the staff has to be people with cancer, so the good news must be the least common event in the lot" so I asked for the good news first. "So the good news is that I am now certain of the diagnosis, there's no argument in the lab anymore about the nature of the tumor - ** odds were 2 against 1 in favor of cancer before ** and we don't need a specialist from Harvard. The bad news is that this diagnosis is cancer. It is called an adenosarcoma, or also called malignant adenosarcoma" (I don't mean to be pedantic here or to interrupt the grand master, but the second moniker sounds redundant to me) I looked this thing up - here's what I have found: "Adenosarcomas of the uterus are seldom observed and diagnosed". how useful is this definition to you on a scale from 1 to 10?

Anyhow - the oncologist seemed to remember the difference in size between my resume and his and decided to illustrate this cryptic medical language with a drawing. On a small piece of paper advertising "Fosamax, alendronate sodium tables", he went on drawing what looked like a light bulb with a rusty filament. I was wondering if this was a symbolic way of telling me that he had an idea but I was stunned to hear that this was a drawing of my uterus and cervix and that the part that was blacked out was what he had just removed (read 80% of the cervix). Darn, I'd never want this guy on my team if we play Pictionary. He would draw a picture of a spaceship and want me to guess an egg.
So, he explained to me that this form of cancer is actually not a cervical cancer but a uterine cancer (why it was on my cervix will probably remain a mystery until the end of time I suppose). It is a very rare form of cancer, and unseen to his knowledge in a patient falling in my age group (faithful to my principle, if there's one thing that I will remember it certainly is the fact that he doesn't see this every day) and it now looked pretty aggressive.

So apparently, they took loads of pictures during the surgery and the results of the biopsy are making their way around the high spheres of the medical authorities. I wish this would make me famous but I bet that everything is labeled case EO69-4. Trying to get hold of these for my family album. But I am going on a tangent here, let's go back to our main storyline.

There is only one permanent solution: a hysteric tummy, huh, no sorry, a hy-ste-rec-to-my. (although, technically, there is a high chance of this cancer developing again in nearby tissues, it is also recommended to do regular general screening. It is apparently also a cancer of the lungs and breast. I am sure that I could do with a little bigger breast but this approach would not be my preferred option).

So my oncologist has given me two options and two weeks. His main recommendation is a complete hysterectomy (I can hear my cats laughing already at the idea that their "mom" will be "neutered"). Given my young age ( (<= note, that is a man's compliment) and the fact that he's confident that he's removed the bulk of it for now, he said that he would allow me to wait and be watched (read, regular biopsies and scans). However, the cancer is not cured. So technically, I have cancer.

I asked the oncologist if he could rate the chance of re-occurence on a scale from 1 to 10. He gave me a 9.9999. Going back to 3rd grade math, I deduct that this type of cancer has a high risk of re-occurence in the uterus as well as the cervix that hasn't been permanently zapped (where did my 1 chance in a million go???), and it is not quite the type of baby I'd like to see grow in there.

Now, there are risks associated with this approach.
Risk 1: that not everything is caught in time and that there will be more need for chemotherapy and/or radiotherapy. A hysterectomy preserves the ovaries. This type of gentle treatment does not.
Risk 2: that if I did decide to wait (to start a pregnancy), the process might have to be cut short to treat cancer and if it is a tiny bit early, it might treat another growth in the uterus at the same time :(((
Risk 3: that his "surveillance" isn't 100% proof (this type of cancer cannot be detected by a pap test - don't ask me why, I don't know why the oncologist chose a red tie today either)

Finally, he is ordering a scan but we have to wait for the cervix to heal, right now, the scan would show only scar tissue and disturbed matter...I was so much longing to go back into this tube-like machine of MRI (took them TWO hours last time to get those pictures. I say, they should have been happy with the first shot and use Photoshop for the others)

So - that is the story in a coconut shell. See you in 2 weeks, guys, for Alien 2.

Ripley

2nd Operation

2007-02-19T10:29:00.000-08:00

Hi everyone,

I am just back from the hospital where I spent a lovely couple of days.

The oncologist decided not to wait and see because the tumor was growing much faster than he had anticipated. Since it was already pretty much over the cervix, sounded like he didn't want to risk an invasion :)
In any case, the oncologist removed the entire tumor (or so he thinks, he still wants to order a scan to make sure that there are no cancerous cell left). And in doing so, he removed most of the cervix (about half maybe?). He also said that he zipped the nearby cells with a small electrical blast to reduce the risk of re-occurence in the same location. But then, my regular doc didn't believe that this could be done after she looked at the MRI (she had cancelled this procedure) and Lili (my babysitter these days) said that one of her friends (physician) knows Dr S. and thinks that he's the best oncologist/GYN in town!

Apparently, when I woke up, the first thing I said was to make sure that someone would feed my cats...and those ungrateful animals chose to poop on the kitchen floor as a thank you gesture.

Frankly, they should pay patients who spend nights in hospitals. Nurses wake you up every hour on the hour to check random things such as your blood pressure, temperature and oxygen levels which I am sure change drastically from dream to dream. They decide to draw some blood at 4AM for some lab work - there obviously isn't a better time to do that and I am sure that it can't wait. And they also like to bring you back from the cozy universe of dreams to ask you if you feel like having some more of those delicious ice chips at 2 and 3AM (I asked the nurse to convey my compliments to the chef, she looked at me as if I was a visitor from Mars) or engage me on a very intellectual exercise: estimate my pain level on a scale from zero to 10, whether or not I am complaining about pain. I replied 5.687 once but she couldn't find this on her charts so she didn't know how much of those nice narcotics she would have to administer.
And just like at work, you agree on your OKRs right after you're admitted. The nurse writes on a board by your bed "Goals". My goals were
1) pain control
2) diet: ice chips
3) clear out lung, deep breathes + cough

I did my best to eat as many ice chips as I could, to accurately measure my pain level to the hundredth decimal and to cough loud enough to wake up the entire floor.
I particularly liked the nurse who tells me: "Don't worry, Dr S. always comes early in the morning and he will change your diet". The Dr in question turned up at 11AM and moved my diet to "clear liquids" - but I had a treat of jello...a tasteless gelatinous blob. Not sure if this was an upgrade or if I had been demoted.

I was almost forgetting. Just to make sure that you do NOT get any sleep in-between check ups, they also place you in a room with someone who is being treated for sleep apnea and who snores louder than you can cough. Thank God for those narcotics and whatever chemicals there were in this anesthesia cocktail.

Doc said that I should spend at least 24hr in the hospital so they could keep an eye on me (I guarantee, they had all their senses fixated on my vitals all night), he ordered antibiotics/anti-fungal and electrolytes through IV for the entire duration of my stay (so not only are you not allowed to drink anything but you also experience all the drawbacks of fluids as you need to go to the bathroom every hour, transporting with you a heavy and clumsy IV pole which means that the door can't close). Oh, and they also want to measure your "output" so they can adjust the levels of electrolytes. I am now officially "discharged", even though they wheeled me to the parking lot so I looked more ill than when I arrived at the hospital (I was walking just fine back then). The doctor has asked me to stay home and not walk for a week, has given me more painkillers and antibiotics. After this weekend, I can switch to non narcotic pain killers :) I am not supposed to drive nor drink alcohol and I have a 24hr emergency number to call if there's any problem (fever, heavy bleeding, craving for ice chips, etc...) that's not 911...eg, I get to talk to someone who actually has heard about me and will no doubt ask me to describe my pain level on a scale from zero to ten. No exercise for 2-3 weeks (until doc says it's OK), no travel for over a month. I need to go see him next week for a funny stitches removal exercise and have regular scans/check ups for the next 1-5 years after which I will reach cruising speed of 2 OB/GYN visits/year as opposed to one.

Now, I could not finish this little story without thanking Lili who got bored with me prior to the surgery, got bored in the waiting room during the surgery and got bored waiting for my wheelchair in the parking lot upon my discharge. She managed to trick the security guards at the hospital into getting her in after hours so she could wish me a good night. Sweet Lili also filled up my fridge with tropical fruits and brought wonderful flowers to decorate my living room. Unfortunately, - and I feel SO bad - the cats can recognize a good salad when they see one and feasted on the flowers...

Overall, I feel fine. Some cramping but nothing that the narcotics can't deal with, I feel very sleepy but nothing that the narcotics can't help me with. I have an iPod, a nice collection of books and two cats to pass the time in the coming days. Oncologist said that if risk of miscarriage/early labor could probably be managed with a reinforcement (stitches) of the cervix at that time + special care, eg. get bored in bed for three months before birth. In any case, he said that he didn't have a choice, did his best and that it was better than no cervix at all. So most importantly, and unless the scan shows otherwise, I am now cancer-free.

Now that you're done reading - on a scale from zero to 10, how did you like this essay?

Ship Wreck Short Version

2007-02-07T11:22:00.000-08:00

In July, Finance Monkey, a regular sailor, was helping deliver a boat from Hawaii to San Francisco. After four sun-bathing days of sailing in calm seas, the crew noticed a pod of what turned out to be sperm whales about a mile away from them and took their cameras out. But when they heard a loud BANG and felt the boat shake, they were surprised as the skipper had warned Finance about properly securing her shoe collection. They soon realized that the boat had been hit by a descendant of Moby Dick. The 40 to 80-ton whale (the crew being inexperienced in the sexing of large marine mammals, especially at 7am and before coffee, greater precision wasn't possible) rammed the 40-foot yacht, opening a large hole in the ship's hull. For non-sailing readers, this is generally considered a bad thing.\n\n

So what did\nthe intrepid crew do? They tried to stuff the hole with sails and sail bags,\npump out and bail water for a half hour but courageously decided to abandon\nship after the rapidly rising water reached knee (or waist for female VPs)\nlevel and ruined the 5 kgs of Snickers kept for emergencies. Meanwhile, the\nskipper managed to fit in a most dramatic Hollywood\nsequence "Mayday, Mayday, Mayday – this is yacht XL, etc…" which unfortunately no one picked up. It was\nreally well put.

\n\n

The Coast\nGuard was alerted by the most sophisticated devices such as satellite phone, a\nyellow emergency position indicating radio beacon, an ICOM hand-held radio\ncharged at 60% and a hand-held Global Positioning System device (your VP works\nat Google). They immediately sent a\nplane and organized a model rescue operation resulting in the safe retrieval of\nthe crew after only a day of drifting around on a life raft. After a few\nhours on a container ship, the inquisitive crew found out that it was bound for\nJapan.\nFor Americans and other geographically-challenged readers, this is not close to\nSan Francisco.\nFortunately, a passing fishing vessel returning to Hawaii, accepted the by-now famous crew on\nboard. A few days later, the Fantastic Four made it safely back to Honolulu with 152\npictures of a sinking ship and whale backs.

\n\n

The reason why\nthe whale attacked the boat remains a mystery. However, marine biologists\nbelieve that it was a French whale practicing head butting on an Italian boat.

",1] ); // in the ship's hull. For non-sailing readers, this is generally considered a bad thing.

So what did the intrepid crew do? They tried to stuff the hole with sails and sail bags, pump out and bail water for a half hour but courageously decided to abandon ship after the rapidly rising water reached knee level, the bow disappeared under 3ft of water and salt water ruined the 5 kgs of Snickers kept for emergencies. Meanwhile, the skipper managed to fit in a most dramatic Hollywood sequence "Mayday, Mayday, Mayday – this is yacht So and So, etc…" which unfortunately no one picked up. It was really well put.

The Coast Guard was alerted by the most sophisticated devices such as satellite phone, a yellow emergency position indicating radio beacon, an ICOM hand-held radio charged at 60% and a hand-held Global Positioning System device. They immediately sent a plane and organized a model rescue operation resulting in the safe retrieval of the crew after only a day of drifting around on a life raft. After a few hours on a container ship, the inquisitive crew found out that it was bound for Japan. For Americans and other geographically-challenged readers, this is not close to San Francisco. Fortunately, a passing fishing vessel returning to Hawaii, accepted the by-now famous crew on board. A few days later, the Fantastic Four made it safely back to Honolulu with 152 pictures of a sinking ship and whale backs.

The reason why the whale attacked the boat remains a mystery. However, marine biologists believe that it was a French whale practicing head butting on an Italian boat.

Ship Wreck - long version

2007-02-07T10:52:00.000-08:00

Detailed Account of events (as per the captain log):

Some day in July in 2006...
Double reefed main for the night as we are going through regular squall passages. 15 knots of wind. Beating at 4-5 knots. Course 350 degrees N. Sunny days, calm seas. About 450 miles off the Big Island, 500 miles off our starting point, Kanehoe Bay.
10am boat time (PST): I go off watch after 4 hrs on deck and get ready for a well deserved rest. 10 minutes later, James (crew member on watch) comes below and tell us that whale were spotted about 1 mile ahead of the boat on starboard. I go out in time to see spouts of water. We alter our course to stay clear off the whales. 10 minutes later, James calls again to get us to see a pod of 4 whales behind the boat on port side, about 3-4 boat lengths. I take a look at the whale, we take a few pictures and I go back below to sleep. James and David (watch captain) bring the boat back on course.
10:30am boat time (PST): I am dozing off when I hear a big "BANG" and feel the boat shake. My first thought is that we have hit a submerged container. I hear that 10,000 of them are lost at sea every year and they take a while to sink. Watch crew looks up thinking that something is wrong with the rigging (mast, forestay, etc...) - in their peripheral vision, they see the fin of a whale disappearing under the boat. I jump out of my bunk to check it out.
I go to the bow which is where the noise was coming from. I see a crack in the hull at floor board level (below the water line). I call out "we have a leak". This looks repairable with epoxy. I try to bring the two sides of the cracked hull together and press against it to try to plug it. The water flow doesn't seem to stop. I push aside the lines that were dangling off a bungee in this area. I then face a 3x4 ft (or more) hole in the hull. We are taking on water. I call out "we have a hole in the boat". The skipper comes to the bow to check this out. The hole extends from just underneath the foredeck all the way down to the floor board at our feet.
The skipper gives us orders to contain the leak, goes to the radio and issues MayDay calls every 5 minutes. We start the engine in neutral to charge up the hand held radio and the satellite phone (as well as use the engine water system to pump out water). No one is picking up the Mayday calls, which probably means that no one is within VHF range.
I am pressing a sail bag against the hole to try to limit the water intake from the inside. I secure this with bungees and lines. We have the bilge pump going and James is activating the manual pump. The watch captain (David) and I bring the jib #4 (small headsail) on deck and try to patch the hole from the outside of the boat. We attach the head of the sail to the rail on the starboard side, have the sail go under the boat, in front of the hole and tie it up at the mast/stanchion on the port side. This is not water tight but helping a little bit reduce the water flow. James abandon the manual pump, and join David and myself for a bucket line to bail out water. The owner is still trying to contact someone on the VHF single-banded radio. He also sets off the EPIRB, the emergency beacon. This sends a signal via satellite to the coast guard with the name of the vessel and the last recorded position off the boat GPS.
After about 30 minutes of battle against flooding, we have water at knee level, and it is still rising. Our plugs don't seem to be very effective. The skipper decides to get the liferaft ready and order us to bring water and food up on deck, near the transom (stern).
We bring up two cases of MREs (emergency food), and all the gallons of water. The skipper has the liferaft ready to go on deck, a handheld GPS, and our communication equipment. He orders us to put on our foul weather gear and get our grab bag (IDs, medication, cameras, etc...) - everything else needs to be left behind as we won't have space for it in the liferaft. I shout regular update on the water level. My last message is that the bow is now covered in water.
11:30am Boat Time. We inflate the liferaft and transfer food and water into it. We transfer our bag and board the raft. We have a line attached to the boat. The bow of the boat is about 3-ft under water.
11:45am Boat time (PST): we cut off the line tying the liferaft to the boat as we watch the yacht sink. We have officially abandoned the ship. It is now up for grabs if anyone wants to salvage her. We organize watches to check for passing vessels. We have flares ready just in case any one comes within sight. We have a drag to keep the entrance of the liferaft off the wind (and waves). The liferaft feels like a water bed. The canopy keeps us cool. We are all wet and salty. We make one phone call to the Pacific Cup race committee on the satellite phone as well as friends/family. The mast of the yacht is still visible and is the only part of the rig that remains above water.
13:30am Boat Time: we hear a Coast Guard plane, a C130. The Coast Guard drops a water-tight canister with radio and sponges which James swims for and keeps us on a half hour schedule for updates. There are 3 vessels within 100 miles of us. A container ship (90 miles), , a fishing vessel (40 miles), and a second fishing vessel (60 miles). All distances are given in nautical miles. The first fishing vessel has a vietnamese crew who does not speak English. We are left with the other two.
All day: waiting in the liferaft through a couple of squalls and rising seas, although still mild/calm by Ocean standards. We update the coast guards flying around the liferaft (then relieved by a second airplane) every half hour with our new position read off the hand-held GPS. The Coast Guard are guiding the rescue ships to the EPIRB signal. The Coast Guard spot whale 2 miles off our current position. We hope that they won't come near our precarious raft. We also hope that any sharks in the area will have enough food with our 5 loaves of bread, 2 kgs of peanut butter and strawberry jam and 5 bags of sneakers that sank with the boat.
10:30pm Boat Time: the container sh arrives on site, drifts next to the liferaft and launches a lifeboat.
11:30pm Boat Time: lifeboat reaches us.
Midnight Boat Time: We board the lifeboat and dispose of the liferaft (so that no one will try to go after it thinking that there might be people on board)
1am Boat Time: we are on the container ship. They feed us a full (and nice meal) and give us water. They are en route to Yokohama, Japan so will hand us off to the fishing vessel. 3.5 hrs later, the fishing vessel arrives on site. The inital transfer attempt (directly off the side of the container ship) inflicted $50,000 worth of damage to the fishing boat. We launch the lifeboat and are transferred onto the fishing vessel in a nerve-wracking jumping exercise. We were bouncing around a lot, and we had to jump, catch the rail of the fishing vessel and hoist ourselves up over it.
We go back to Honolulu as the fishing vessel is done with their fishing trip. We catch two fish along the way. It takes us a few days to get back to the island.
All 4 people abord the yacht which sank 500 miles off Hawaii are back on land and in one piece 4.5 days after the wreck.

the type and angle of the hole rules out a sharp-edged container. The force with which the boat was hit seems to suggest that it was an intentional strike. Other elements that corroborate this assumption. We were going only 4-5 knots. If we had hit a whale from the bow, the damage would not have been on the side, just forward of the mast. If we had hit a whale on the side, there would have been scratches along the boat, not a big impact in one place. The whales that we could spot were motionless in the water. It is possible that one of them was sick, or a calf and that the whale reacted in a protective manner.
Whales are a protected species so we couldn't strike back - it is also illegal for boats to get near them. Ideally this should be a reciprocal rule. We have recommended an education program for whales off of Hawaii as they don't seem to be aware of this rule.

Post-MBA Musings from FinanceMonkey

2007-02-05T21:26:00.000-08:00

Hello dear zoo visitors!

Succumbing to general pressure, I have decided to come back with another blog :) Upcoming posts can feature some catch up items such as:

- Improv Classes
- Ship Wreck
- Trekking in Patagonia
- Work/life balance
- Cats
- 2 x 200-mile running races
- Fire onboard a plane
- the World of Dating
- Boat ownership

And some new ones such as:
- Battle Against Cancer

See you soon! I promise to populate this blog super regularly...