Round

I think most regular readers of my blog know that the last few months have been a bit overwhelming.  I was gearing up for IVF at one of the top worldwide centers when instead of finding myself finally pregnant, I found a cancer diagnosis.  It’s been a pretty rough ride, but the good side is that it’s been caught early and isn’t life-threatening.  It does, however, significantly alter the already-not-easy path to parenthood.  Later this month we travel back to this fertility clinic to gather eggs from my ovaries and hopefully to create some frozen embryos, and then in October I’m having the hysterectomy.  That means the frozen embryos will make their way into the world via another woman - a gestational carrier (the politically correct word for ’surrogate’).  We think we’ve found the carrier, and the lawyer, and if all works out should be able to get this underway by the end of the year.

I am wanting to create a separate blog for this undertaking — we are being pretty open about this (unlike the years of infertlity which I endured pretty much alone).  I guess I now feel it’s not a personal failing, and that I need the support.  In addition, we couldn’t lie to a child about where they came from, and of course my friends and family have been a big support these past few months.  Still, even now I get a bit fed up with repeating the same details to everyone - except my Mom I have a hard time keeping track of who last left off with what info, so my sister’s suggestion to put it into a blog (maybe a private one) seems like a good idea.

I’ve kept Round here going for over 2 years, despite ups and downs and hard times, so I do think the blog solution could work well for me.

My challenge is to come up with a name for the new blog that I like - so far I’m not doing well on that, so I thought I’d ask you all - since most of you have clever names for your own blogs maybe you can help me?

The blog will only focus on the gestational carrier journey and I probably will need to mix in some of my health issues (report after surgery, etc).

I did come up with a name I thought was in the right direction, but there is a big problem with it :

“Not the straight path”  : I like it because it’s true, we are not on the easy or normal path to becoming parents…

the problem?  We are not gay.  There are a number of gay couples that use gestational surrogates to build a family, and obviously with the name ‘not the straight’ everyone would think that’s our situation (what’s the Jerry Seinfeld line - ‘not that there’s anything wrong with it’…) but since we are in fact a married heterosexual couple it’s not exactly the best description.

I want a title that conveys hope, and yet also outlines the fact that this is a big huge undertaking, risky, expensive, emotional, difficult, important, and complex.

Another idea is to use the word ‘intended’ prominently - the parents of a baby of surrogacy (the ones that will take it home) are called ‘intended parents’ in the legalese.  I like the hope and forward-looking side of that word too.

If you have any suggestions, could you pls leave them in the comments?  Hopefully the power of the internet will help me come up with a name worthy of this undertaking.

Thanks!

I’m making progress on many fronts these past few days :

I’m back on the low-carb diet hard core these past 3 days and the scale is showing it, so next week’s weigh in should be a good reflection of where I really am, in that the carb bloat should be gone by then.  I’ve also been drinking tons and tons of water and tea, and feeling better for it.

I’ve unpacked and done tons of laundry and have only 3 small piles of stuff from vacation to finish putting away (including a pile of books that I don’t have room for…).

I contacted a surrogacy lawyer and we had a conference call with her yesterday.  She seems knowledgeable and thorough, my husband (also a lawyer) was reassured by her answers and her honesty (when she didn’t know, talking about risks, referring certain aspects to lawyers specialized in other fields, etc).   It seems like the pieces of this complicated puzzle are starting to fit into place.

I had a conversation with my boss about what is going on.  She’s been great and has only had the vaguest notions of what’s going on, but I told her pretty much everything yesterday (without emotion, yeah me!).  I’m back at work now and for the next few weeks, but then will be in the US for the IVF collection for 10 days or so in late Sept, a week or so before that will be unable to travel due to the shots I have to take, and then after the embryos are made & frozen I’ll have the hysterectomy - which will put me out of commission for several more weeks at least.  In short, although right now I could be back 100%, it’s a very small window, and it would be very disruptive to my team for me to come back for 3 weeks and then go away again for 3 months, so we agreed that I will just stay in the background and follow things from a distance except for a few projects that were always mine anyway.  I’m lucky she’s been so understanding and kind, it’s taken a lot of pressure off.  I’m also going to tell my team the big lines of what’s going on next week.  It was too painful to talk about without crying before my vacation, but now that I’ve had more time to get used to it & we have a plan in place I can live with, I find I’m able to talk more calmly about it. 

I also think I managed to fix my computer. I took a ton of pics on vacation and the second to last night as I was importing them I moved the computer and the external drive which holds all my photos disconnected.  Since then hadn’t managed to get to them, but I’ve been researching how to repair it and bought a new external disk and some software and it looks like it’s working (currently running in the background).  Now the new disk will be my media disk (photos, music & video) and the old external disk will become what I’ve needed for a while now - a BACKUP!

I haven’t managed to get myself to exercise - not sure why, as I have planned to each day and it’s not a lack of time, but I’ll attack that next week.

I am a creature of habit.  One of my top coping mechanisms for stress is to eat.

I’m on vacation.  I am not supposed to be stressed, but every time I have to dive back into the medical issues of this stupid endometrial cancer, there it is.

Things seemed to be going well - I managed to barely cry despite seeing my whole family (including newborn neice, hugely pregnant cousin, and many phone calls with my hugely pregnant sister who finally had her son on Monday).  {Anyone who has struggled with infertility knows that new babies and pregnancy news just reminds you of what you want & can’t have - it’s not that you’re not happy for others, but you’re sad for yourself}

My sister who had offered to be a surrogate for us but the timing was a problem (she’s pregnant now with her 3rd) found a friend of hers who wants to be a surrogate, and is a midwife by profession, dramatically reducing the huge stress of finding someone with good motivation who we think will be a safe and healthy gestational carrier.  We spoke with her.  We like her. My husband is happy with it.

But the US fertility expert (one of the very top clinics in the country) threw a small wrench in the works 10 days ago by telling me that our chances for success would be considerably higher if we did the egg collection / IVF before the hysterectomy instead of after it, as apparently the hysterectomy will significantly reduce blood flow to the ovaries.  He’s willing to do it after, of course, but felt it important we know, and said we were only talking about 10 days of elevated estrogen in this scenario.

I had to put calls in to my doctors in France - good luck trying to reach the French professionals in August (vacation season).  Luckily my fertility doc had told me he’d take my call over the holiday, and he ran interference with the gyn-oncologist for me (he agreed with the US doctor, and managed to convince the oncologist that the risk was minimal).  The timelines were getting stressful, as my surgery date was for Sept 1st, and my next period should be around Aug 25th, and if were are going to do this I needed to get some medication shipped to me in LA before my flight back to France on Saturday, so the day was full of phone calls and organizing, and then having to re-start the explanations to my family (many doctors, so long technical discussions).  In the end it seems everyone thinks its a reasonable approach.  The risk that the one extra month and 10 days of high estrogen push this cancer to something more agressive is pretty low.  The chance of success of a gestational carrier having our baby is higher.

During these past days, the stress monster returned, kept under tight control for the most part by yours truly (excepting my extreme neediness towards my husband).  My birthday eating started to show some of the cracks of the control, as I’d planned to have cake and ice cream, but nothing else carby for the treat - instead ’special treats’ started the night before my BD and continued off and on for a few days.  And came back today, first in the form of 1/3 a bag of popcorn at the movies (must say that US movie popcorn beat French popcorn hands down, and popcorn has always been a favorite).  Then for dinner had about 1/4 of one of those (incredibly salty) blooming onion things as an appetizer - ostensibly so my husband could try it, but who do I think I’m kidding?

I know that neither are the end of the world, but I also know the beginning of a problem when I’m in it.

Hopefully coming here and sharing what I’m going through will help me get back on track.

I’m also grappling with what to do/say at work.  My boss knows the big items but is someone who is incredibly discreet.  But all this work stuff can wait until Monday when I really am back at work and can discuss it with my boss.

Until then I have a bit of vacation left that I plan to enjoy — carb free!

NOTE : apologies for those reading just for the weight updates … the endometrial cancer diagnosis of May 25th has sent my life into a tailspin and it’s not been possible for me to separate out the weight and these other issues.  That’s true on a daily basis, and it’s true again in today’s post.

Ok, since for the third day in a row my weight has shown up as 199 I’m making it offical and moving my ticker, Hello again Onederland.  Goodbye forever 200+ land.

I’m not putting my next big milestone on my ticker yet (to get back to the weight of my wedding 2 years ago, which was also my previous stable weight).  I want to celebrate the accomplishment of coming this far, and I want to keep the scale stable (or slightly moving down) over the next 3 weeks in California. I’ll be happy to come home from our trip weighing in at 19x.  199 will be just as acceptable as something lower, let’s keep the expectations realistic.

I also saw my gyn oncologist today and talked with him about the other experts opinions and what my fertility guy had said on Tuesday.  He reiterated that from a cancer standpoint I’m not facing a lot of worry (in that it’s quite manageable and all the tests have come back looking encouraging) but also said that he understood the desire for a pregnancy and the time lag that the hormonal treatment would involve (my fertility doc felt the additional 9 month delay was not a good idea).

So we agreed to move forward with a ’simple’ hysterectomy, meaning removal of the uterus, but leaving the ovaries.  I’d be able to do egg collection via IVF 8 weeks after the surgery, and the surgery is scheduled for September 1st.  He also said he didn’t want to do the hormone treatment for the next month, said the risk is very minimal and that it’s better from a cancer staging perspective to not have the hormone treatment.  That made sense to me and avoided the need for the IUD placement, so I agreed.

I feel like it’s a good decision, and one I can be at peace with.  In the meantime my husband has come around this past week to the idea of a gestational carrier with our embryos.  This option doesn’t pose moral dilemmas to him, and that is ALL HIM coming to terms with it, not me leading him here, as I’ve purposefully given him lots of space on this.

I’m even ready to face the facts more, and will call the US fertility doctor today, and also start seriously researching finding our gestational carrier (surrogate).  One of my sisters has offered to be our surrogate, but she just announced her third (and final) pregnancy, and by the time she’d be ready it’s out of the time window that we need.  So we’ll be in the more-expensive (but less emotionally complex) situation of hiring a surrogate, which apparently can take a long time.   Working all this out will no doubt keep me busy and occupied for quite a while.  But it feels hopeful and smart and life-affirming, all while having the safest options for my health.

Without the progestin treatment for the coming weeks, I have no excuse to gain weight, which is good and will keep me on track for our trip.

I am almost at a weight milestone.  The scale has shown numbers all over a 5 pound range this week, but I’ll live with what show up tomorrow as my ‘official’ number.  We were out of town for this week’s weigh in and I didn’t weigh the day we got back, so this will be the last official weigh in before summer vacation (unless Friday, the day of our departure, I happen to hit Onederland, in which case I will record it, because damn, I want to be there & it would be great to have that as my mindset on vacation.

I am almost at a decision for the treatment for my endometrial cancer, at least short term.  I’ve had more medical appointments in the past 2 months than anything else, and have researched the topic throroughly.  I’ve not managed to get the exact same opinion twice, which is a bit disconcerting.  I had the pathology re-read by an expert pathologist in the US who actually downgraded the diagnosis (less scary), although doing so changes nothing in the longer-term treatment (hysterectomy) it does reassure me with respect to timing (can be more confident that several months of hormonal treatment is safe).  I’m lucky to have access to so many top experts, but on the other hand when they contradict each other it just gets more confusing.  Each comes from their own perspective and expertise and therefore biases.  The challenge is negotiating what they think vs what I want, at least insofar as the disease progression issues can be dealt with.

The good news in all of this is that all of the doctors agree that this is not life-threatening, and the risk of it progressing to a more advanced, agressive & scary cancer is pretty small.  Exactly how small a risk does vary by who I talk to, but in general everyone says how ‘lucky’ I am this was found so early.  I am very aware I am indeed fortunate to be able to twist myself into knots thinking about the treatment options where I preserve some degree of fertility, since 6 weeks ago I was petrified my life was on the line, which today I know it’s not.

Somehow, knowing that I’m ‘fortunate’ to have the choice doesn’t seem to make it any easier.  And what makes it even harder is that my husband and I don’t have the same assessment of all the fertility options.  This has created enormous stress - both for our couple and for each of us individually, especially as we started to get expert opinions saying that from a cancer point of view the hormonal treatment and an eventual pregnancy are possibiliites.  From my point of view the next issue then becomes SUCCESSFUL pregnancy.  As I’ve said to my husband, I’ve been on this infertility ride long enough that I’m really clear about one thing : I do not want to get pregnant, what I want is a HEALTHY BABY.  So then the questions come up as : if my body is able to crank out a few viable eggs next year (older! and I haven’t had successful ones yet, so this is a big IF), if I do get the eggs, will they be more likely to grow to healthy babies in MY uterus or in that of a surrogate?  I suspect that between my age, my miscarriage, my clotting factor, my ectopic and now my cancer (even after treatment), the answer is that there will be a better chance of success with a surrogate.  My husband’s ears and mind stopped listening when the cancer doctors said I could carry a baby after the treatment, whereas my mind was wanting the answer to the above question from a fertility expert (not a cancer one, who does not know infertitlity).

So we’re at an impasse of sorts, although I think my husband will come around, and I am not decided - just wanting more info.

I also am keeping myself quite guarded in terms of getting up hope.  I’ve been through quite a lot in the past few years trying to have a baby and have had just about every complication that you can have - and now cancer on top of it.  While I would love to believe that the answer is as simple as a few months of treatment and then magically being pregnant, I know that for me it won’t be that easy, and that even a successful IVF (not a given at my age and with my history), a successful pregnancy test doesn’t mean a successful pregnancy — a baby.

so ALMOST decided on a lot of things also means NOT decided, still in turmoil, still preoccupied by this, still a huge stress in my life.

But I’m also ALMOST at a weight milestone, and definitely holding the course of keeping to a healthy eating program and getting a small amount of exercise, and doing a number of things to manage my stress.

I guess that’s the best word for my current emotional state : wobbly.

Actually, I’m doing okay on a number of fronts, but I am way out of it where work is concerned.  It’s like a switch of what matters and doesn’t has been hit, and I just can’t get myself to focus on the work stuff.  I can, however, build my cancer website and research endometrial cancer and treatment.  I can follow up on any number of personal projects.  But work… just isn’t clicking.

Most of the time my emotions are fine, stable, calm even.  Every so often I have a stressful moment, but they are becoming rarer.  I’ve been able to sleep without drugs or trouble for several nights now (although I keep the pills by my bed for now, just in case…).

I’m still using all the herbal and aromatherapy products labeled ‘relaxing’ or ‘anti-stress’ or ‘rescue’ like they are going out of business.  I am decluttering like mad.

I saw that something went haywire with the feeds at the 3FC blogs - I read your blogs in a reader and click over to comment from time to time, but everyone’s new post counts exploded last night - the good part was that I was able to unsubscribe from the dead blogs really easily, since they were obvious (they didn’t update), but since I had over 400 ‘unread’ posts I just reset it to ‘mark all as read’ - hopefully I didn’t miss much important with anyone.

I’m hoping to get the slides for pathology to get sent for a second opinion today or tomorrow.  Just the logistics of cancer, calls, second opinions etc is almost a job in itself. Maybe that’s why my day job seems less important?

Last night I had a stupid fight with my husband over almost nothing.  In reality, it was that I was wanting to be comforted and he was wanting me to be “normal”.  It took me several hours to realize how anxious I was in general - my mind whirring at a million miles an hour.  In the end I decided to take a sleeping pill because I felt that not much else would get my mind to settle enough to sleep.  I couldn’t even get myself focused enough on being miserable to have a good cry (which often works to relieve stress & get me to sleep).  Not that I’ve been crying much, in fact.  I’m wondering a little if that’s a problem - like I’m doing such a good job of holding it together on the outside that on the inside the stress emotions don’t know where to go.

I’m guessing this doesn’t make any sense to anyone reading this - it feels pretty convoluted in my mind.

I went to the gym today and did a 45 min elliptical workout that really kicked my butt.  I’m out of shape.  Still, I’m trying to be gentle with myself and allow my body recovery time from the surgery.  So if I go tomorrow it’ll be a short session, and in fact I’d be better off either walking or going to the pool.

I also spent several hours back in the data mines, reading and saving more clinical studies on endometrial cancer and it’s various treatments.  While I like to have information, it’s also clear to me that doing that for several hours makes me nutty.

To top it off, I got some lab work back yesterday that scared me - several things were abnormal - C reactive protein was very high, as was the ESR, both of these are measures of inflammation.  My PCP who is normally impossible to move into ‘mildly concerned’ was considerably concerned with these (repeating them next week).  These high levels of inflammation could be early warning signs of autoimmune disease or are often found at the same time as cancer (but mine is supposedly non-invasive so…).  In any event, it’s another worry on top of the others.  I am also insufficient in vitamin D, and so have started a 3 prong approach to that - taking a prescription bolus of 100,000 iu a month, taking daily 15 minute sunbaths, and switching to a face cream that does not contain SPF.  I’ve read too much about the link between low vitamin D and cancer to give two hoots about looking older, and I think the risk of a skin abnormality in the future is a moot point if I’m not healthy RIGHT NOW.  When I get to the US at the end of July I’ll also pick up a good-quality high-dose vitamin D supplement.  Right now I have a supplement of 800iu but that is obviously not enough - I’ve taken that much for at least a year.

Better news : I finally switched out my summer clothes and found that several items that are too big - 2 pair of jeans that I bought in desperation going into last summer because I couldn’t find ANYTHING to fit me here in Paris, and they never fit well (but cost a fortune).  Well, I’m down 17 pounds now and they are ridiculous looking and I decided to get rid of them.  Yeah!  I also went through some of the other boxes of stored clothes - which are labeled with the weight I think I need to be to wear them, and surprised myself by finding a pair of black capris that didn’t fit last summer but are okay now, and found several other items that I could get on - they’re not ready to be worn in public, but the progress is clear.  They also feel like new things since they’ve been too small for over a year (and won’t come out this summer - I don’t intend to open that box again until I hit the weight marked on it, so it will be several months more.

I saw another doctor yesterday for a second opinion on the course of treatment.  Of course, just because this isn’t confusing enough, her opinon was different from the other doctor - her suggestion is a hysterectomy right away, but letting me keep my ovaries.  After the hysterectomy then I could to IVF stimulation, collect the eggs, and put the embryos in a gestational carrier (surrogate).  It’s probably the suggestion that makes the most sense, especially as the risk of my own pregnancy seems too high, and it takes away the biggest risk - that there are cancer cells left behind in the uterus that could grow with time or with hormones (from IVF or pregnancy).  We have a telephone consultation with a US gyn-onc expert next week, and hopefully we will start moving towards a consensus.

Checking in on the stress management (ha!):

• Finished watching Stripes
• Read a few pages of Rabbit at Rest
• Played “Brain Power” on the Nintendo DS
• Had coffee with my friend S (who is the one who found the second opinion doctor)
• Meditation before sleep
• Drank green tea (a yucky one that I have decided to throw out)

I was officially back to work yesterday, slowly getting back in the swing of things.   Sounds like other than a quick trip to London in 2 weeks I won’t travel much before summer vacation, which is fabulous.

Monday (when I wrote my last post) was my first really good day in the month since I’ve been diagnosed.  I had a plan, I felt hopeful, physically I was on the mend, etc.  I had an appointment with the general oncologist at the end of the day that I was so close to cancelling because I thought it was unnecessary.  But the fact that he is a friend of a friend (a friend who has moved mountains to get me the best care in the country) and that my husband is still working his way through these painful issues around pregnancy etc made me keep it.

And this is where it gets worse.

I sincerely hope none of you ever have to deal with cancer, but if you do you should know that cancer doctors are sub-specialized, and the one who takes care of you is someone who specializes in your kind of cancer.  For gynecologic cancers (cervix, uterus, ovaries, etc) it’s a gynecologic oncologist (gyn-onc), a very specialized field.  For some other cancers there are other sub-specialities too, and then the rest fall under ‘general’ oncologists - who deal with nothing but cancers, but not of the kinds that the sub-specialists take care of.  So my main doctor now is a gyn-onc, but this friend of a friend is a general oncologist.  So he knows cancer really well, but is not at all an expert in my kind of cancer.

What he said was that he thought I should have a hysterectomy, immediately.  That we were taking a big risk by waiting and doing the hormonal treatment, and that the idea of a pregnancy (and thus 18 months of waiting before a hysterectomy) was insane.  He didn’t mince words, didn’t beat around the bush.  He’s the only medical voice who’s been so clear with me, and he basically spoke directly to my deepest fears and scared the crap out of me.  I was so annoyed, I had left the house for the appointment feeling so good I was even wearing mascara - for the first time in a MONTH.

I do appreciate his honesty, and it’s been good because it forced me out of “obedient patient” to taking control again (and really, who are we kidding? I am about as far from a docile, non-challenging patient as you can get).

Bizarrely it’s helped with my husband - I guess because the doctor told him very succinctly and very strongly the facts that are behind all of the fears and thoughts I’d been having about carrying a pregnancy.  That aspect is good, because I think my husband is okay now with some of the other paths, and the doc did a good job of boosting my credibility.

He also made me second guess everything.  I’ve fired up all my networks, and will talk early next week with a US gyn-onc friend of the family (who I will also ask to put me in touch with a gyn-onc who is really experienced in fertility preservation), and I’ve also decided to go for a second opinion here in France (another expert doctor being arranged by my friend).  I also spent hours and hours researching clinical trials and medical journals and other scientific evidence in the field.  I skimmed hundreds of abstracts, downloaded about 30 trials, and started a nifty database.  I have the known facts myself now, and can help put what doctors say in perspective. This doctor we saw admitted he is not an expert in this field, but what he said about early erradication of all traces of the cancer makes sense, and

I didn’t get much sleep for the past several nights.  I’m still working through the shock of what he said to me - I haven’t been able to share it with my family or friends yet.  I am finding it so incredibly hard to give up the dream of having my own baby - the difficulty I’m having giving it up is making me wonder whether I’m holding onto it in an irrational way (a way of denying the disease).

In any event, tomorrow I am seeing another Gyn-Onc, in hopes of having 2 doctors telling me the same thing.  Keep all fingers crossed that this one says keeping my uterus long enough to harvest eggs is an option that makes sense.

I’m doing okay these days.

It’s not always easy, it’s not linear, it’s not perfect, but it’s okay.

I’ve lost another pound this week, again pretty effortlessly.  I am still so amazed that I am not hungry while I eat this carb-restricted way.  That I can put lots of oil on my salad. Eat meat with sauce.  Have a cheese and olive snack.  Eat a dessert that has become my evening staple and makes me not miss sweets at all.  (Marscapone cheese mixed with a teaspoon of cocoa powder - so rich and chocolately flavored that I dont even miss the sugar).

The cancer is slowly shifting to be just a part of my life, not the monopolizing presence in my life.  I’ve attacked art projects and decluttering and other piled-up projects I’ve been meaning to get to ’someday’.

Some of the discussions with my husband have been tough.  We don’t have the same perspective on the different paths to have a baby - I am totally okay with gestational carriers, he is not very at ease with this.  And at the same time, I’m very aware that I’ve not been successfully pregnant, and that to try a pregnancy at my age and with my history is a riskier undertaking than to use a young and proven gestational carrier (all these surrogate carriers have already had succesful pregnancies).  Plus there is the cancer angle, and I’m afraid of a cancer coming back while pregnant, having to make horrible choices between tumor and baby, the anxiety of 9 months of fear when it should be 9 months of healthy anticipation, etc etc.  These items we agree on, it’s just the ‘is hiring a surrogate carrier ethical’ issue which we don’t agree on, and while I think we’ll eventually find a way forward that we are both comfortable with, knowing we are not on the same page on this has been hard on me, hard on us, this past week.

I should have the final pathology report this week, and then the treatment plan starts in the coming days.

I’ve done some cooking this weekend, always very therapeutic to me, and have really, really enjoyed being home for several weeks now.  I imagine that next week and the following one I’ll be back on the road a bit, then we’ll be off for vacation, but at least I feel settled again.