May 15, 2009

FROM CRUSHINGLY DOWN TO RELATIVELY ASSUAGED

When I first found out about my balanced translocation, I was so happy to have a reason.  I felt this weight lifted, that now I finally knew why I was doomed to so much sadness.  I was happy knowing that there was a plan and a way to solve our problem.

But today reality set in, and I feel despair.

I met with the doctor today to discuss IVF.  As usual, this man channels my inner Mrs. White.  And I left in a daze, not knowing whether I was more disturbed by the flames on the side of my face or by the lump forming in my throat.

Call me naive, but this process is going to cost far more than I anticipated.

All my initial ballpark figures I'd been working with, supplied by people who've done this here in town before and the genetics counselor, well...they doubled today.  The PGD that I was told would be around $2000?  Nope, it's $5000.  Oh, and we have to pay to freeze sperm, since my husband will be deployed.  And then we have to pay for the more expensive, extra special IVF that they have to do with frozen sperm.  The numbers that I had in my mind of how much all this would cost was half of what it really will cost.  And that's even with the sizable discount we're getting because we will be using a military doctor.

And that's per month.

The sick thing is, we have the money.  We could pay cash tomorrow for this and not really blink (especially in this absurd economy, where money ain't worth the paper it's printed on).  But that's the rub that makes the choice kinda rough.

The local clinic said that they've never had anyone do PGD.  The receptionist said that the pricetag scares people away, so no one has ever taken them up on it.  And if we didn't have the money either, we would have to resort to good old trial and error: keep on babymaking at home and hoping that we flip heads instead of tails one month.  The choice would be made for us by the fact that we had no option to do the expensive treatment.

But it's a bit harder to have that choice to make.  It's hard to know that you could just keep flipping that coin for free and eventually end up with a baby, and conversely to know that we could spend many thousands of dollars and still end up with nothing.  There are so many ways this hinges on luck.  The doctor said that he could probably get 15-20 eggs from me.  He said usually about 80% will fertilize.  So on the low end, that means 12.  Statistically speaking, half my eggs should be duds, so if we could get six good ones, we'd do the first try with three.  If we get pregnant, hooray.  If we don't, we have three back-ups to try again another month (at a decent-sized repeat fee, of course).

But that's statistically speaking.  Of all the eggs I was born with, half should be good.  But all those eggs is a far bigger sample size than what they can extract.  Heck, we've already flipped three tails in a row.  A small sample size of 15 eggs is not necessarily going to break down 50/50, just like 15 coin tosses won't either.  (To illustrate: my father is one of 13 children, 7 girls and 6 boys.  But I also know of another 13-child family with 12 boys and 1 girl.)

What if we only get one good egg?  And what if it doesn't take?  What if we spend all this money and come out with nothing in the end?  Could I live with that?

Could I live with not trying for it in the first place?

My husband got home from training while I was writing this post.  I hurredly cashed today's chips and told him how stressed I was about the whole thing.  My husband, the stingiest man on the planet, waved off concerns of money and said resolutely that we are going to go through with this.

Oh, but we can't even begin to get these ducks in a row until at least September.  So I had asked the doctor about babymaking at home for the two months until my husband deploys.  I asked: if we got pregnant and we had another miscarriage, would that prevent us from going ahead in September?  It shouldn't.

So I asked my husband if he wanted to try to take the cheap way out, if he wanted to take another gamble at home and try for a healthy baby the old-fashioned way, to see if we could get away with not spending those many thousands of dollars.  He vehemently declared that he is done with babymaking at home and does not want to spend our last weeks together fussing over basal thermometers and pregnancy tests.

My husband managed to take the edge off over this whole thing.  I feel much less panicked now than I did when I sat down to start this post two hours ago.  (He also said he doesn't want me stressing our for the next few months each time I want to buy a ball of yarn either, because he is the most fantastic husband on the planet.)

So I guess we're going to do this.  I think.  My husband said, "We paid $500 for that ol' dog, and look how much joy he brings us.  The baby will be even better."

Someone with kids assure me that a child is 24 times better than a dog...

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May 09, 2009

WE'RE GONNA NEED A TRACKING NUMBER ON THAT PACKAGE



At the end of my appointment yesterday, the genetics counselor said that I seem remarkably well-adjusted and calm about my predicament.  I told her that some experiences have been easier than others, and when I started explaining a few of the more difficult ones, I got choked up.  Especially when I explained how I feel frozen in time while everyone else around me moves forward with life.

I sometimes forget how deeply this cuts.

When I first learned of the balanced translocation, I went through a vengeful stage.  I wanted to knock on the door of everyone who told me to just relax and punch them.  I wanted to point out everyone's wrongness and tell them to their face that it was even worse than they could've ever guessed.  I wanted them to feel bad for all the stupid advice over the years and for their nonchalance in telling me I just haven't been patient enough.

I'm kinda over that, mostly.  Somedays moreso than others.

The genetics counselor said that my specific translocation isn't the worst one in the world, and that if my husband and I wanted to keep trying the natural way, we'd have about a 50% miscarriage rate.  We've flipped three tails already, but with a large enough sample size, we'd eventually get a heads.

When I pointed out that my husband is gone for nine-month chunks and I'm 31 1/2 and we don't have a great track record of getting pregnant quickly and we're just flat out done with gambling, she agreed that PGD might be a good option for us.  Especially since I already have a military fertility doctor to offset some of the $20,000 pricetag.

The next step is meeting with my doctor to find out how quickly we can get started and which company we will do the PGD through.  She guessed it would be someone in New Jersey.  Then I asked how that works, like do they run a test on the embryo and mail the data to NJ for interpretation?  She said more likely they would have to send the entire embryo to a cellular-level specialist.

Let that sink in for a second, because it was the most interesting thing she said all day.  My husband and I would start babies here with our doctor.  The babies would then be FedEx'd to an embryologist who will take one of their eight cells out, test it, give the babies the thumb's up or down, and then FedEx the babies back to us so they could be injected into me and hopefully nestle in for nine months.

FedExing a replicating and growing baby.  Of all the wonderments...

I definitely will be following that tracking number.

If we manage to have a baby through this process, imagine telling our kid that story someday, that we loved him so much that we swaddled him in bubble wrap and sent him on a trip to a doctor to make sure he would grow up healthy and strong.

Or her.  Or them.

Hopefully them.

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May 05, 2009

MEET THE NEW CLINIC, SAME AS THE OLD CLINIC

Now it's my turn to rip on civilian medicine.  My case manager here on post called the civilian doctor's office and said I needed genetics counseling, and they booked me with the wrong guy.  I wasn't supposed to go to that doctor yesterday at all; he is just a regular maternal fetal medicine doctor.  Absurd screw up on their part, costing me $14 in gas and a day's worth of confusion.  Oh, and costing my fellow taxpayers the amount of the worthless visit.  Which I'm sure is sky high.  I hope Tricare sticks it to them by only paying the bare minimum.

New appointment with a genetics counselor set for this Friday.  I have high expectations for this one.  I want Punnett squares and PowerPoints and a much higher level of detail than found on Wikipedia.

My case manager here was horrified and very apologetic.  I said that she ought to hear the litany of screw-ups over the past two years.  She said, "I know, and I was trying to stop that cycle, not make it worse!"

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May 04, 2009

UNPRODUCTIVE

I would wager that the internet has had a profound effect on the medical field.

If I had discovered my balanced translocation 15 years ago, I would've been completely overwhelmed.  To find any information on the topic, I would've had to visit my local library and use the card catalog for books or the goofy old Reader's Guide to Periodical Literature to find articles.  It would've been far easier to have an expert just explain it to me.

But in 2009, within an hour of coming home from the doctor two weeks ago, I had a basic understanding of a fairly specific genetic problem.  By the end of the day, I was educated on two chromosomes in particular, the risks of PGD, and had even managed to find a medical article from 1982 on someone with my specific translocation.  Eventually I even read about translocations in Swedish.

So let's just say that when the doctor at my appointment today started drawing chromosomes on a paper, I had two thoughts: 1) "It's much clearer if you do it with play-doh" and 2) "No, you're doing it wrong, chromosome 22 is one of the short ones and you've drawn it equal in size to chromosome 7."

Therefore, all in all, the appointment was a disappointment.  The man was neither a geneticist nor a genetic counselor.  I don't quite understand why I had to meet with him and what we were supposed to accomplish.  I plan to spend tomorrow trying to answer those questions.

I did learn one thing though: this process could even be harder than we originally thought.  I got another blood test done today to see if we're at risk for eggs carrying 22q11.2 deletion syndrome.  Fantastic.  If so, it means that even fewer of my eggs will be able to create a healthy baby.

Just one more frustrating and unproductive day to add to my collection.

[A special hat tip to my librarian cousin for reminding me what those goofy green books in my high school library were called.]

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May 01, 2009

ARMY OF ONE

I got lucky and there's an opening with the geneticist this coming Monday morning.  Unfortunately, Monday morning is the only day next week that my husband has training he cannot skip and cannot reschedule.  So it was either go to the appointment alone, or wait three weeks for the next available appointment.

I think they need to designate Army wives as the Army Of One.

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