Saturday, March 31, 2007

Poultry

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!!!

Friday, March 30, 2007

Prepping for Egg Retrieval Day

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)

Thursday, March 29, 2007

Ordered Vials!

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.

Wednesday, March 28, 2007

Telling My Team At Work

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...

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.

Friday, March 23, 2007

A little INSEAD refresher course ;-)

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

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...

Thursday, March 22, 2007

Donor Selection

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...

Wednesday, March 21, 2007

Ongoing Fertility Treatment

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.

Tuesday, March 20, 2007

1st Day Fertility Treatment

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...)

Wednesday, March 14, 2007

At The Drugstore

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

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

Tuesday, March 13, 2007

More About Cancer(s)

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

Good resource from our friends the Brits

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

Monday, March 12, 2007

More from Oncologist #2 and Next Steps

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!

Saturday, March 10, 2007

News from the tumor board!!

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.

Friday, March 09, 2007

Good Old Technology

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...

Thursday, March 08, 2007

Sarcoma Awareness Foundation

"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

Wednesday, March 07, 2007

Update from Oncologist #2

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.

Tuesday, March 06, 2007

"rear-ended"

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????

Monday, March 05, 2007

Penny Size Scar

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!

Friday, March 02, 2007

Definition

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.

Thursday, March 01, 2007

Side Benefits of Hysteric Tummies

- 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