Finally Arrived

There's a Change in the Air

Updated: Excuse me, Typepad keeps eating this post.  Comments were not working, but hopefully they do now.

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There's a change in the air...

The possible answers to the "what do we try next"  question are always, perpetually on my mind. I have probably contemplated this question with 90% of my brain for the last four weeks.  On a daily basis, I change my mind. 

I have felt a REAL shift in my thinking in the past week, mostly the result of finding this blog.  After reading through TK's archives, I realized that she successfully adopted a 4-month-old boy from Korea within 11 months.

4 months old.  That's younger than I thought possible.  I know that her case might be extraordinary, but at least it opened my eyes to the possibility.

Maybe there is a way out of this hell hole after all.

I Wish There Was a Greeting Card for Situations Like This

They say that prior to a difficult conversation you should first mentally rehearse it. 

And what conversation could be more difficult than asking a couple you met just once if you can have their frozen embryos?

Let the rehearsals begin:

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Rehearsal #1

My Friend's Ex-Boss, George:  Hello?

Me: Hi... Is this George?  My name is Susan, I'm a good friend of Rita, your former employee from XXX Corporation.  I met you and your wife at her barbecue a few weeks ago...

George: Oh, Rita's friend, yes... But I'm sorry...

Me: I know you probably don't remember me.  I was the one who helped watch your 3 kids  while you and your wife ran a quick errand. And they are GREAT kids, so cute... I just love 'em!  In fact, I would kidnap them if I could...

George: Please stay away from my family and don't ever call here again.

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Rehearsal #2:

My Friend's Boss, George: Hello?

Me: Hi... Is this George?  My name is Susan. I met you and your wife at Rita's barbecue.  I don't know if you remember, but I said your 3 kids were beautiful, and you asked me if I have kids, and I said no, and then you asked if I wanted kids, and I said yes I did but things don't always work out the way you expect, and you said you understand because your wife has endo and all your kids were conceived via the same IVF cycle at Stanford, and I then told you I was in the middle of a shit cycle cycle that did not look very promising, also at Stanford.  Remember?

George: Oh, yes, I vaguely remember now.

Me: Oh, thank God! I mean, that was a strange conversation to have with someone you just met at a cocktail party, huh?  I don't even know how we got talking about that!  Well anyway, you're probably wondering why I called.  Here's the deal. That IVF cycle ultimately failed and then the next one did too.  So, it looks like that route is pretty hopeless for us.  So, we're looking at different donor options.  Anyway, I was wondering if you had any extra embryos that my husband and I could take off your hands and put in my uterus?

George: **Spitting out coffee** What?  Is this some kind of joke?!? We hardly know you!

Me: I totally understand your reaction. Totally.  But for just a minute, stop thinking about YOU and think about ME here.  This all makes perfect sense if you think about it.  Your wife and my husband are from the same Asian country (one which places few children for international adoption), and you and are I both of northern European decent!  And how many couples are gonna want your biracial embryos anyway?  Not many, I'll bet.  But we'll take them off your hands, no problemo!

Besides, we have so much in common.  You and I both have brown hair, or at least I think you did before you lost most of yours and it turned gray.  And our spouses are both thin and athletic, and we're both not!  And the kids would all have that same Amer-Asian look, which goes great if you're a biracial couple, you know?  Heck, what am I saying?  Of course, you know!

And besides that, your embryos are at Stanford, and we go to Stanford!  You're in the computer industry and I'm in the computer industry.  You drive a Toyota, and I drive a Toyota!  You and your wife like lamb kabobs, and so do my husband and I! We have so much in common!  Why wouldn't you love to entrust us with those precious embryos?

George: Well, I....

Me: (continuing to blather on, right over George's objections) And BESIDES, you have THREE kids now. I'm sure you don't want any more at this point, do you?  If you don't mind my saying, it seemed like your hands were more than full with just the three, never mind four or five! How long do you want to keep paying $500 a year just to keep those embryos on ice, anyway?

George: I don't know what to say. This is all so... inappropriate. I think I better go!

Me: WAIT! Don't go! We'll pay you! Well, not "pay" pay because I'm pretty sure that's illegal.  You know, repay you for your cryo costs for the last few years, and we'll take you out for a really nice dinner and buy the kids a jungle gym!  Hell, I'll even install it! I'm actually pretty handy, being an ex-engineer and all, just like you!

And if you want, down the road, we can get all the "brothers and sisters" together for a big party!  And I guess we better make sure that the kids don't all end up at the same high school.  I mean we wouldn't want them to meet and start dating each other or something, would we?  That would be incest!  Pretty sick, huh?

And wait, you and your wife don't have any serious hereditary medical conditions, do you?  Because if you do, well, we're totally not interested anymore.

George: I'm hanging up now...

Me: Don't go! Please! I just realized, that after all that, I don't even know if you have any frozen embryos left....  Well, do you?

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As you can tell, the mental rehearsals are not going well.

Goddamnit.  When is Hallmark finally going to make an appropriately worded greeting card for this type of situation?!?

Still Pondering the Options and Need Your Advice

I am such a liar about not posting again until 2006. Please forgive my drama queen antics. 

I write again because T and I are slowly whittling down the big list of options.  Many serious conversations have taken place and we are not in the same place yet. So, once again, I need your wise advice.

Don't suppose you remember my big list o' options?

OK, you don't. It's okay, I understand. You read 60+ infertility blogs.  And lets face it, I'm not nearly as memorable as julie or akeeyu.

Here's a refresher, updated with my current thinking:

1. Try IVF #5 with my current clinic?
   I can't cycle again until February anyway, so I might as well switch to a new clinic in the meantime, especially since staying with Stanford won't help me get into a donor embryo program.

2. Try IVF #5 with a new clinic?
   I have one remaining retrieval covered by insurance and I want to use it, even though the chances of success are not great.  I'm leaning toward SIRM since they specialize in poor responders.
   
   Note, however, that my husband's patience for continued attempts is growing thin. He wants to move on to adoption. He worries I will never give up on ART and we'll never get closer to actually having a family.  He also argues that with my DES-elevated risk of miscarriage and premature birth, my fucked up body could put a child in harm's way.  Finally, T is also afraid of "losing me" if I go through labor and delivery; his memories of me bleeding out during my 2nd ectopic are fresh in his mind. I don't believe, however, that DES-related pregnancy complications generally affect the mother's health.  So I think his fears are not really justified, although I am trying to respect them.

3. Donor eggs? 
   Too expensive and risky given my DES-elevated risk of miscarriage and premature birth. Furthermore, my husband is not on-board with this approach.

4. Donor embryos? 
   I haven't given up on this, but it is looking like less of an option. My clinic says they only have 1 or 2 embryos, but already have several couples on a waiting list.  And apparently there are new regulations that has put their whole embryo donation program in limbo. They are not sure if they will ever be able to transfer these embryos or accept new couples.  I would guess that other programs would be similarly constrained.
   
   Of course, if I can cajole someone into giving us their embryos, without requiring a clinic program, maybe we'll be okay. Anyone out there have bi-racial Asian-Caucasian embryos you'd like to donate?
   
   Also, again, for all the reasons mentioned under #2, my husband is not so psyched about this option. He wants to move on to adoption post-haste.

5. Donor egg/embryo plus a gestational surrogate?
   This is too much money and too risky, and it is clear that my husband is unwilling to support such a drastic approach.

6. Domestic adoption?
   We'll be exploring this at the Northern California RESOLVE conference this Saturday.  I'll admit, I'm leery of open adoption and afraid of a birthmother changing her mind.  Besides, why would a birthmother pick us to raise her child?

7. International adoption? 
   We'll check this out at the conference as well.  To me, it seems far from ideal because you miss the first year or so of the baby's life, and I really, really want to be there on day 1.

8. Give it all up and get a motor home with a basenji in every window?
   To explore this possibility, I've ordered a book from Amazon.com. 

==> So here's where I need your advice:

A. What do any of you know about SIRM?  Are their satellite locations as good as the mothership in Las Vegas?  I'm especially interested if you are a poor responder.

B. Do any of you know of active donor embryo programs where it is likely that you'll be able to transfer within 4-6 months?   

C. What is the deal with these regulations that are putting the kibosh on embryo donation in general?  Is it just the Stanford clinic, or is it universal?

D. Any advice for a couple where one person wants to keep trying ART and the other person wants to move on to adoption?

E. Has anyone reading this decided to resolve child-free?  Can you point me to any blogs of people who are making the transition from infertile to child-free? 

F. Anything else?

Too Lazy to Try Again

On Sunday, Maroon 5 showed its bloody face in my knickers. 

On Monday, I belatedly chose the warmth of my down comforter over a thin hospital robe and a lubed-up ultrasound wand.  I decided to NOT call my RE, to not get a baseline ultrasound for IVF #5, to not start injections that day. 

I opted to keep all cooter viewings within the family this month. 

Except for the dog. He's part of the family, but not allowed to see my cooter.

And neither are my siblings or parents, unless they send me flowers and get me trashed first.

Anyway, this was not the original plan.  I had planned to try a few days of stims with my old clinic. Maybe we'd somehow get lucky this month.  Maybe my inner chicken farm would finally awaken and start throwing off premium-grade eggs.  If not, I'd cancel by day 7 to preserve my one remaining insurance-covered IVF attempt for another clinic. Meanwhile, I'd start the process of investigating other clinics and getting my records together.

Well, so much for that.  Too lazy.  Too worn-out. Too bitter. Too sad.  Too scared. Too beaten down. Too defective.

With the holidays rapidly approaching, the soonest we could cycle again would be in February 2006.  That is, if I even have the strength to try one more time.

It's official.  There is no way we'll resolve this ordeal in 2005.

Feel free to unsubscribe from this blog now.  No news will be forthcoming until sometime in 2006.

All About My DES-Ravished Uterus

I so appreciate all of your thoughts regarding what we should do next (see previous post).  It is really helping me sort through all this.  Please, keep it up.  You've given me a lot to think about and asked me a lot of important questions, many of which warrant their own posts.

I'll start with Wessel's question: Why did I list option #5, "donor eggs/embryos plus a gestational surrogate?"  The answer might change your ideas about what we should do. I'd appreciate your thoughts on this.  Really. It would not be assvice.

We do indeed have reason to suspect that my uterus might not be able to sustain a pregnancy, even though I've never had an intrauterine pregnancy.  I am a DES daughter, meaning that I was exposed to diethylstilbestrol when my Mom was pregnant with me.  Her effing OB was a lazy ass who didn't keep up with the medical research, because even in 1970 they knew that DES not only doesn't prevent miscarriages, it actually increases their incidence.

For women who were exposed prenatally, DES is linked to 1) cervical cancer, and 2) abnormalities of the uterus and cervix that make it difficult to carry a pregnancy.  To quote one source "[DES Exposure] does not mean that DES daughters cannot and do not sometimes conceive and deliver normally, but the possibility of problems is very great."

The most obvious manifestation of DES exposure is having a "t-shaped Uterus."  Soper of Uterine Wars has a t-shaped uterus and maintains an excellent informational blog about this kind of anomaly.  Not all DES daughters have this anomaly, however, but their chances of getting and staying pregnant are still reduced because of unfavorable changes in the uterine lining.

Due to the DES exposure, my uterine shape is not normal.  It is not a classic T-shape, but is about halfway between T-shaped and normal. Check out the below diagram, which I cooked up based on my HSG films.  My medical records say my uterus has "irregular margins."

DES exposed women with an abnormality of the cervix or uterus (which I have, although not as severely as many) are:

• 5 to 13.5 times more likely to have an ectopic pregnancy[1]. (The theory is the uterus is inhospitable, so the embryos implant in the tubes instead.  Note that I've had two ectopics.)
• 1.5 to 2.6 times more likely to have a miscarriage[1].
• 3.o to 9.6 times more likely to have a premature birth than unexposed women[1].

The research shows that, even with DES exposure and uterine anomalies, if you manage to get pregnant, you have a 61% chance of delivering at full term compared to 80% for unexposed women.  The odds are still in my favor. But I personally don't know anyone who is DES-exposed who has succeeded.  Getupgrrl  is the blog world's most famous DES daughter, and she ended up using a gestational surrogate due to repeated miscarriages.  It seems likely that Soper was DES exposed due to her uterine shape, and she ended up adopting Moonpie from Kazakhstan. 

When I first saw Dr. Blond in August 2004, she strongly recommended against transferring more than one embryo because she felt my uterus was not capable of sustaining multiples (turns out this did not become an issue since I am a poor responder).  She also encouraged us to line up a high-risk OB (which I didn't do because I felt it was jumping the gun).  Furthermore, about 6 months ago, she told us she did not think I was a good donor egg candidate due to my uterine shape, poor lining, and DES history.  Now, however, after 3 poor response cycles, she is talking donor egg again, provided we're willing to accept the low odds.

Part of me thinks it's beyond risky -- stupid, even -- to spend $30K on donor egg when statistically we have a significant chance of a bad outcome.  But then again, I really want to be linked to my child in some fashion, be it biologically or gestationally.  In California, a gestational surrogate plus an egg donor is somewhere in the $100K-$150K range[2].  That is just too much, and is infeasible unless our friends and family help us by donating their eggs and writing 9-month leases on their wombs.  And boy, talk about asking for a favor!

Bottom line, however, is that we just don't know whether the increased miscarriage and premature delivery risks apply to me since I've never had an intrauterine pregnancy.

So now you see our dilemma.  I think we'd (or at least I'd) move on to donor eggs or embryos once we scraped up the money if it weren't for all this DES crap.

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[1] Note that I present a range of numbers because different research studies measured different results.

[2] My notes from a recent RESOLVE conference breaks down the cost of donor egg plus a gestation carrier in California as follows:

• $25K-30K fee for the gestational carrier
• $20K for the gestational carrier's agency
• $10K fee for the egg donor
• $10K for the egg donor's agency
• $10-20K is the cost of the IVF cycle and embryo transfer
• $5-$40K for the gestational carrier's prenatal medical expenses
• $20K-30K for the labor and delivery (Insurance typically excludes L&D costs for gestational carriers)
• PLUS: reimbursing the GC for any lost wages or childcare costs that result from pregnancy complications or bed rest.

PS - I feel a follow-on post coming on, one detailing the DES pregnancy outcome stats based on the original data from the various studies, because I am a super analytical nerdand a half. But it would probably bore the hell out of you.

I'm hoping the answer will come

Pick a number 1 through 8 and tell me what we should do.

1. Try IVF #5 with my current clinic?  (I have NINE days of drugs left over.)
2. Try IVF #5 with a new clinic?
3. Donor eggs?  (ask my cousin?)
4. Donor embryos? 
5. Donor egg/embryo plus a gestational surrogate?  (Or, as my RE calls it, "heroic measures")
6. Domestic adoption?
7. International adoption? 
8. Give it all up and get a motor home with a basenji in every window?

Still stumped. 

Wessel wisely tells me that with time I'll know what to do next. I know she is right, so I am waiting.  And waiting. Oh so patiently.

Hey God! I'm waiting over here! Care to tell me what should happen next? 

Hah! I knew you wouldn't tell me because you haven't helped me one BIT this entire process.

To occupy myself, I've been engaged in a comment flame war vigorous debate about IVF  over at the Health Business Blog.  Read the comments, half of which are incomprehensible 3-page essays by yours truly and the other half of which includes statements likening of IVF to breast implants and ignorant assertions about adoption, and you can see why I'm double cranky this week.   Updated to request that you not join in the flamewar. I feel badly for the owner of this blog (he left a comment below) because he did not post the ignorant statements, and it appears that a few of his commenters and I have hijacked his blog for our own private debate.

And thanks, everyone for the comments. I am in awe of the outpouring of support you all offer me.  It is amazing. I feel like I have so many friends out there who really get it and, for that, I am eternally grateful.