Thursday, August 26, 2010

Updating and Clarifying

Hey you guuuuuuuuuuuuuyss! (what was that from??)

I think most of you got what I was trying to articulate in my previous post, but just in case...the finer points:
1) I did not say that all multiple pregnancies are super high risk, but there is no doubt in the medical literature that they are riskier than singleton pregnancies. From the March of Dimes: "More than half of twins and nearly all triplets are born prematurely, associated with an increased risk of death and disability."
2) While CC.R.M. will obviously say that multiples are not their goal, and their literature will say as much, they do push beyond the recommended guidelines...and they're not unique in this. I'd say many (most?) REs do. And they can, because who's going to call them out on it? The patients who are desperate to succeed? The insurance companies that don't cover this stuff for the most part anyway? It's largely unregulated.
3) I totally understand transferring more than the recommended number of embryos--which is why I mentioned I did it myself. For so many reasons--emotional, financial, physical--we try to limit the number of times we go through IVF. IVF sucks. If you haven't been through it--even once--you really have no idea. No way around that.
4) No one knew those twins were conceived by IVF, so my other coworker's "it's not fair" comment was not reacting to anything A.R.T. related, but other things, which I just cannot mention here.
5) I simply think that if IVF were covered, it would be much easier to elect to transfer a single embryo at a time when that is appropriate. The current recommendations are as follows:
One embryo woman under 35 with good prognosis, max embryos two. With less favorable prognosis--max three. So see? Right there I went against guidelines two times.
6) I also don't think IVF should just be covered for everyone carte blanche...there would have to be guidlines there as well.

But none of this matters to me anymore.

I'm out of the A.R.T. game. I like to say I'm in recovery. But I still sat in my office and cried on Wednesday when the lunchroom talk yet again went to the fact that we have eight pregnant women in our smallish office...and that it's "most definitely in the water". Which then elicited all kinds of responses from women who couldn't--apparently--imagine anything worse than another pregnancy. Someone found a pregnancy test in the bathroom and everyone was trying to guess to whom it belonged. At one point they were going around the room.

I panicked.

What would I say when they got to me?

Be the spoiled sport and say "I'm infertile. As much as I'd love it to be mine it's not and it never will be?"

Just smile and shake my head?

Burst into tears?

Luckily it died out before it got to me. My one blessed coworker who has held my hand through the worst of the past few years leaned over next to me and asked if I was ok. I nodded. And then went back to my office and sobbed.

I sat at my desk and felt so completely out of control. I have no control in the adoption. All I can do is just sit here and hope for the best. I cried for a woman on the other side of the world who is pregnant now, with a child I hope to raise, which feels wrong on so many levels, and I cried because she may be hungry, or may be sick, or stressed, and no one is rubbing her belly and asking her about names and no one is asking to see her ultrasound photos and I have no part in any of it. I can't help her. I can't control anything. All I can do is be left out of the goddamned lunchroom talk yet again. Most everyone knows about my adoption but I'm never "counted" in the expecting woman count. There's the eight pregnant women and there's me, LastChance, on the outs again. I guess I always will be huh?

Tuesday, August 24, 2010

Biting my tongue.

I did it.

Yesterday I bit my tongue so hard I nearly bit it off, but I did it. And with a smile.

A patient of mine, who is an executive in health care, was in for a cardiac screening test. After I went over her results, we started talking about insurance and coverage of preventive health testing. Blah blah blah.

Then she said IT.

She said, and I quote: "Now what is really ridiculous is coverage of...what do you call it? People having babies? No, not people having babies, that's ok, but people who can't have babies and do to that...what do you call it? vitro....?"

I interrupted and said "In vitro fertilization?"

"Yes! That's it! They pay for that...ummmm, excuse me? I think that's insane. I refuse to pay for that!"

I could feel my face freeze in a ridiculous smile. I thought there must be a hidden camera somewhere in my office.

I managed to stammer: "Well I don't think many pay for it, actually."

Her reply: "Oh yes they do! And it's ridiculous."

I didn't say anything else. After all, she was my patient and if the conversation had continued, I likely would have decked her, called her out on her bad dye job and stupid 80's hairdo, and then been fired. How about a little compassion for those of us who aren't naturally fertile? Sheesh.

Which brings me to something else...and I am warning you, I am NOT judging anyone for selecting to transfer certain numbers of embryos...I'm just talking here.

Someone with whom I work had their first IVF recently. They are young and otherwise unexplained. They chose to transfer two very good quality blasts. They got pregnant with twins. Their twins were born way too early and have spent considerable time in the NICU. One has had multiple surgeries.

I heard another coworker talking about how we (my employer) will be dropped by our insurance company because this person's twins have bankrupted us. It's true, they probably have. I cannot imagine the cost of two babies in the NICU for several months. The coworker was saying that it's not fair.


Let's take a step backwards here.

Our insurance doesn't cover IVF. If they had, I can guaran-damn-tee you that couple would not have transferred two blasts. The doctors who recommended it was going against recommended guidelines. In medicine, guidelines are gold. They are the standard. I practice to guidelines because they are based in science and research and outcomes studies.

But when you have zippo coverage for IVF, you take bigger risks and doctors allow it, encourage it even. You transfer more than might be the recommendation because you cannot afford--literally--to fail. It's understandable. We transferred four embryos on our last IVF and I was 34 years old. Granted, we were not a typical couple--we'd have four failures prior with nary a chemical, and our embryos weren't stellar. But even still, guidelines would say transfer no more than three. So I completely understand the need to transfer 'more than enough' just to be sure. Just to up the odds. Because I did it myself.

CC.R.M. has an unacceptable multiples rate. Multiples should never, ever be the goal. I am not saying all multiple pregnancies are doomed to be costly and risky and all of that, but the goal should always be healthy singleton pregnancies. But who's going to call them out? They want the success rates, too, and I don't think they can force women do to single embryo transfers. I do know they limit the number of CGH normal embryos they will transfer, thank God for that.

So back to my stupid stupid patient and my coworker: do they ever really think? Think that if IVF were covered we might not be faced with desperate couples making decisions that stray from established guidelines, and that health care costs would actually be lower in the end?

Of course not.

Because they're stupid. And annoying. And I'm really ashamed I couldn't have spoken my mind with my patient, but alas, I couldn't.

But maybe if they could watch my video (I reposted my link to our IVF music video) they would see that we're just two human beings, in love, wanting a family, and having to go to measures no one ever should to have one.

And it didn't cost anyone else a blessed cent, we fronted it all ourselves. So there.

Sunday, August 22, 2010

One year ago.

August 2009.

We were finishing up our last fresh cycle at CC.R.M. It had gone well, for us...but when I look back on it with hindsight my estrogen was out of control and we still had poor fertilization and all of that.... But oh we had some 8-celled day three embryos and I poured my entire hope and love right towards them. They were lovely and beautuiful and perfect in our eyes and yes, we loved them right from the start.

For nearly three months they remained frozen in a storage tank, while I dreamed dreams of nurturing them into full beings.

Of course, we know how that turned out.

I will never ever forget those moments of seeing the second line, of calling a few close friends and my sister and hearing the excitement in their voices. I don't regret for a second sharing when things were so tenuous, because how often in our lives to we get to feel such unabashed joy and share it with the ones who mean the most to us?

This August looks very different. We wait, our hope is still frozen, in a different sense, halfway around the world. Nothing is guaranteed. Anything can happen. The world of international adoption is fraught with ups and downs. When I get a letter from the Dept. of Homeland Security, or Immigration, my heart lurches as I prepare for bad news. So far, so good. All we can do is wait.

My Mom came to visit a few weeks ago. After she left she called my sister and told her she was worried about me. Because I don't talk about the adoption.


I've had my heart shattered one too many times to be giddy at this point. We're happy--most definitely--and excited, and yes, hopeful too--but nothing is real. This is all very abstract. I'm in unchartered waters here--how am I supposed to act? We have papers--nothing more, nothing less--sitting in a third world government building somewhere and our names are on a list. I wish it was more than that, but it just simply isn't.

In the meantime, we fill our days with things like this, and pray for a day when that frozen hope thaws into a beautiful song, one that he can sing for his very own children....

Thursday, August 12, 2010

Getting it out.

OK. I have gone back and forth and back and forth about posting this but because it's still rattling around in my brain I figured,

When I read a blog I tend to read the other comments. Sometimes with great interest, as you can learn a lot about other people with their comments to other blogger's predicaments, etc. And of course there is a whole cohort of bloggers out there who tend to read the same blogs and so you get to know people this way and that.

A few weeks ago I read a comment on someone else's blog that really really hurt. It wasn't directed at me but it had something to do with me.

It was a comment that pointed out ways that 'other reproductive choices' (I'll keep it vague here) were better than adoption. Specifically, there was a point made about a partial genetic connection vs. NO genetic connection, and an adopted child having an 'other mother' vs. this blogger's child having only them as a mother. The commenter went on to say that the blogger's choice made them 'closer' than an adopted mother would be to the adopted child.


It hurt so badly to read that. Why does there have to be a comparison? My gut wanted to immediately post all the reasons I feel differently, that maybe I feel adoption is better than other options (it obviously is for me, or I wouldn't be making the choice). How dare they suppose that I will not be as close to my adopted child as anyone else is to their child?

We walk through this inferno of IF and hope beyond hope to somehow emerge on the other side semi-intact, scarred but not destroyed, and whatever choice we need to make to get us to that other side is so intensely personal that everyone else should support. Not compare. Not judge.

Hmmm, LastChance, why don't you tell us how you really feel?

I read and re-read that comment and tried to make it OK in my heart but it wasn't. It wasn't something I would have expected from that commenter and that probably made it hurt worse--it wasn't anonymous, it was someone I blogknew. Or thought I did.

I realize when you comment on someone's blog you can't comment for other readers, too...but as I stated above, I think of the IF blogging community as one that should support all choices because God knows we've all laid on our floors, sobbing, wondering why the world has to be so hard, wondering how the f' we're going to live through the pain, and it is those ties that bind us regardless of individual choices we make to cope, survive, and become mothers.


Got that off my chest.

In other news, the hard drive still hasn't gone to the data place..partially because I'm too scared they won't be able to salvage anything. Partially because all our money heads towards Ethiopia these days (in theory) and so spending $1,000 to recover data that should have been backed up pains me to no end.

The good news is that tomorrow we celebrate our 16th wedding anniversary. As cheesy as it sounds I love Mr. LC more intensely than I ever have and I honestly cannot imagine my life without him. I am lucky. This I know. He took tomorrow off so we'll pal around all day, have our regular gig at the shelter, and then (though it feels weird to go from shelter meal-serving to eating out) go have a nice dinner together. We don't do gifts but we do make homemade cards and it's always a contest to see who can outdo the other...he always wins :)

PS T asked for my email:

Wednesday, August 4, 2010

Excuses, and a request.

I haven't fallen off the face of the earth. Work has been insane, and I've been working a lot from home in the off hours. Sux.

My hard drive died on my laptop last week. It was.not.backed.up. Please, no lectures. All our pictures are on it...all of them. All of my writing was on it. All of our taxes were on it (well, we have hard copies and bulky files full of medical receipts, but...) I have not yet had time to take it to a data recovery place, but I'm anticipating very little recovery for very many dollars. Sigh.

And oh yeah--I lost all my bookmarks. Yes, that was the way I followed blogs. I'm so hopelessly behind, trying to find people again. Yeah, I've heard of google reader. I know.

I have been posting in my head quite a bit but it never quite gets back here. What?? You can't read my mind?

In the past I've sent you to a friend's blog when she was having a tough time. She's a real life fertile friend who has supported me in countless ways along my journey. Her amazing son was officially diagnosed with autism recently, and she started a new blog to document his journey. She's an incredible Mom but this is a tough time, full of mixed emotions. If you have a second, drop by and give her support.

I promise to find you all again, and I promise to get my butt in gear and start writing again--funny as it seems, I still have a lot to say. The latter part of that last sentence is sarcastic, just in case you didn't catch it.