Posted by: katedaphne | June 29, 2008

WTF #6

Yep, we had our SIXTH what-the-fuck-happened consult this week. I took half a day off work because I knew it was going to be ugly. Good call.

It started off typical: When I checked in the receptionist demanded 40 bucks. I told her forget it, I had no intention of paying them to tell me why my cycle failed — and how my embryo got LOST. I think they can tell me this for free. I must’ve looked like I felt, because she told me to sit down and she’d call someone and sort it out. She never called me back up.

Eventually I was led back by a fellow, who asked if I would allow a student to sit in on the consult. I think I’ve done enough for the advancement of medical education in six cycles for just one example, see here, so I said no. Actually, I said, “I’d rather not, if you don’t mind.” With me, it’s when I am super polite that you really have to be careful.

So we sat down in the consult room with Doc P and Doc Y. Doc P is the RE, Y is the embryologist. Doc P started by pulling me up on his computer and I think, just to be saying something, he asked, “So how did you feel after this last cycle?” I just stared at him for a minute, and he was like oh, right, dumb question. So I told him it had been pretty bad, and that we were hoping for some explanation of the process and how this could’ve happened so that we could wrap our minds around it and try to put it behind us.

So Doc Y did his best to explain how freezing embryos is done, how they are thawed, etc. etc. He told us how and where mistakes can happen, and he told us what he had done to try to find it. In the end, of course, it was exactly as we thought: Each clinic more or less blames the other, but basically, it’s just a shitty piece of rotten luck and even if both sides did everything as they should’ve — well, shit does sometimes happen.

So, no new information there. But I got what I wanted, which was the embryologist looking me in the eyes and telling me he had tried his best and was very sorry there wasn’t more he could do. And I believe him. I don’t know whose error it was — or even if there was one. But I still believe Cornell has the best lab, and I believe my local guys are talented and did their best for me.

So, it is time to accept and move forward.

Note: Accepting and moving forward does not mean you can’t sob your eyes out in the RE’s office. Feel free — I did.

Now, on to the amusing thing about all baby docs. They ALL think they can do a better job than the others; they all think THEY are the only one who can get you pregnant. Are doctors in other specialties like this? I’d love to know. So his recommendation is that, if money isn’t an object (and he knows it is, at this point, but he’s just saying) he’d like us to try another fresh cycle, he’d like a chance to do the job.

If we don’t want to do that, he said it is not unreasonable to consider donor eggs, or even adoption. I’ve never heard a baby doc recommend adoption before. He mentioned it in the context of, what are our goals, do we want a bio baby, do I want to be pg, or is our goal merely to have a family. We also discussed the big question, is it the egg, the sperm, or the ute? And how can you tell? He feels confident in ruling out the sperm, and since tests and the lap show my ute looks ok, he pretty much rules that out too. But I had to respect him for saying he couldn’t be SURE it isn’t the ute, that there is just no way to be positive. But he thinks it’s the eggs. He suggested PGD if we cycle again, though he points out that it will probably just be an expensive way of confirming what we already suspect.

The difference between the words SUSPECT and KNOW is so HUGE, though. One thing that makes IF so damn difficult is the constant unknowingness, the perpetual search for an Answer. If you let them, the Why’s will kill you.

And it sucks that money can prevent you from having such solace as comes from a bit of an answer. We are already deeply in debt, and donor egg or adoption aren’t cheap either, so more debt is clearly coming our way. So far, we can manage it but we are near our limit. So to pay for another cycle with PGD, when we feel in our hearts that the outcome will be the same, seems a luxury we can’t afford. This is why I can’t relate to celebrities with IF. They may share similar identity questions and similar heartaches and frustrations, but they can’t know what it’s like to make the choose to trade your whole future for a CHANCE at having something worth having a future FOR.

So, even if we had a spare twenty grand lying around, we are really not up for another fresh cycle with my eggs. Doc P said they’d waive some of their fees for a cycle, though of course they can’t wave hospital charges or several others not under their control. So it would still be expensive. But money aside — we both agree — we don’t want to do another regular IVF. First our limit was three, then four, then five, and then a FET … we are starting to realize (not accept, but realize) that our baby isn’t going to look or act or think or in any way, be anything like me. That sucks for Mike, because (who knows why but) the man loves me and wanted a little girl who was a little like me. And it sucks for me, because I love my family and I love thinking about genealogy and family trees and such and hate to see the chain broken with me. We are each supposed to be a link to our past and to our future, and me — well, I’m only half a link. And that sucks.

After the consult, we had to go to the bank and get the lawsuit settlement notarized. It was our second try at this, because they first time we didn’t know we needed TWO witnesses besides the notary, and the girl at Kinko’s was alone. But this time, all went well and they did not even charge us. So we spent the afternoon dealing with our medical specialists, our banker, and our lawyer. La-ti-DA!

But wait — it gets better! After the bank, I had to go to Saks and pick up a fur coat. I’d love to say MY fur coat, but alas, it wasn’t mine. The magazine I work for was doing a photo shoot for an upcoming issue and Saks was providing the fur coat, and since I was in the city that afternoon I got volunteered to pick it up. So I really dealt with our medical specialists, our banker, our lawyer AND our fur salon. Take THAT, mean world!

So the fur coat got to sleep over at our house Wednesday night. (Funny, because we already HAVE a lot of fur at our house, it is just still attached, mostly, to our three cats and two dogs.) A very bizarre end to a pretty crappy day.

I probably should’ve written about this day sooner, but I was a little shell-shocked. I’d sort of dealt with it the day of the transfer, and again the day of the beta, but it all came back with a vengeance on WTF day. I’ve been kind of walking around zombie-like for a few days. Last night I told Mike I want to get on with the donor egg cycle.

I have always been the type of person who doesn’t see the good of going around hating your life or complaining about it incessantly (tho I do appreciate a good whine now and again). If you hate it that much — you need to take steps to make a change. We already agree we do not like our lives childless. And we agree that we don’t want more regular IVFs. I can lie around hating the lot I’ve been given, or I can try to change it. (Ironically, the John Mayer song Waiting on the World to Change, which I DESPISE, is playing on TV right now. It’s so lame — why WAIT? Get the fuck busy, a-hole. Change it yourSELF!) So although some people have advised that I wait and take my time, no need to rush, etc. etc. … Well, I’m ready. I hate this. Let’s change it.

I’m calling Cornell’s DE co-ordinator tomorrow. (We’re basically at the top of their wait list because DE has been recommended for us since last summer.) And I am going to call a local DE agency and request info. Not sure which clinic we’ll go with or how this will play out or when.

I’m trying to think of it as trading up in the gene pool.

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Responses

  1. I can completely understand your reasoning behing turning to DE at this point. Completely.

    But it must be beyond tough to have to make those kind of decisions, especially when some of it is plain old finances.

    Really wishing you the best,

    xx

    J

  2. So many comments swirled through my head as I read this post!

    I remember walking in for my WTF appointment after IVF #3 got cancelled and they wanted me to pay for the office visit and I just laughed and said, um, no, I don’t think so! They never charged me again for a WTF visit!

    I’m glad you got to look the embryologist in the eye. I don’t think we often do that – the doctor is the guy in the front – so it must have made you feel a little better to have this person come from the back office to address you. And, I agree about Cornell, which is why we’re doing IVF #6 there this summer (hopefully….).

    We’ve also, as you know, been down the DE route. RMA started talking to us about DE after IVF #2. After #3, we paid the money and went on their list. We’ve been at the top since last September, and, if we can do this cycle in August and it doesn’t work, we will go back to RMA and do a DE cycle. I so very much understand the concerns about a baby not having your genetics. I am also VERY big on family trees and genealogy and know that, most likely, the only way my family tree continues is through me and I’m failing at that. Oh, I understand those concerns so very well….

    One comment on PGD. RMA had talked to us about doing PGD if we got enough eggs, which we didn’t in our last IVF there. Interestingly, Cornell advised against it. Dr. D’s theory was, if we were going to keep doing IVF’s forever, in the hopes of succeeding, he might do PGD because, if it showed a problem, we would know and stop cycling. But, since both he and we know that this is the last one we are going to do before moving on to DE, he feels the risk of PGD is not necessary as we just won’t need that information.

    Sorry this was so long, but, this post really touched me in so many places…..

  3. I totally agree about the if you don’t like it change it. I have always had that attitude, and it’s so fustrating to be dealing with something that I can’t change and can’t fix… that being said we are moving onto surrogacy ASAP, and not taking any time off blah blah blah. There is something very difficult about not being able to pass on your DNA, I can relate to that, we have some frosties that we will try with a surrogate, then after that I will be 100% not part of the process (which i really don’t like, I can’t carry the baby and my eggs may suck). I sorta feel like an observer to the whole making a baby thing.
    Anyway, glad that your getting some closure and are able to move onto the next step

  4. I’m glad that you were able to get some closure, as painful as the whole ordeal at the office was. I’m thinking of you as you move forward on this next step.
    xoxo

  5. Ugh. What a lot to deal with in one day. I’m glad you stood up for yourself and got a chance to hear some deserved apologies, even if no one will bother to accept responsibility.

    There are many ways to look at lineage. This may sound odd, and please take it in the caring, sympathetic way it was intended, but I feel my life has been shaped by several kinds of descent that have nothing to do with genetics… As a student, for instance, I had several professors who have passed on their knowledge and (rarely) wisdom. I became their academic child, of sorts, carrying on their work as the next generation. The child you bear will be a link in a different kind of chain, one made of love and knowledge.

    That doesn’t change the need to mourn the genetic link, but perhaps is a bit of a comfort. If you’re ready to go to the next step, do it! And I’ll be cheering for you.

  6. Wow you’ve been through the ringer! My heart goes out to you. My husand and I are going the DE route after only 2 failed IVFs, but I’m a few years older than you and we have male factor. We decided that the goal is to become parents, no matter the genetics. I wish you blessings and a much smoother road in the near future. Take care.

  7. I can see several points at which my head would have exploded or I would have killed somebody. Way to survive without being booked for murder.
    Good luck with the DE stuff. (hand squeeze)

  8. What a HUGE decision. Kudos on making it. I’m sure it wasn’t easy. ((HUGS))

  9. Just another person listening to your heart wrenching story. I am so proud of you (having just found your blog tonight and only reading 1 post so far) for looking the doc in the eye. I think every time they see the human pain in this process it is good….

    Best of luck in your journey.

  10. I think your attitude in acknowledging how much this sucks and choosing to move forward rather than wallow is incredibly admirable. I admit, I am a bit of a wallower! I’m so sorry this has been so hard, and I hope this decision makes all of the difference your next cycle.

  11. I read this post yesterday, but it hit home so much that I had to think about it before I could comment. You know I put everything into lists, so here it goes:

    1. We have remarkably similar stories.

    2. HELL NO were you going to ever pay for a WTF, and I agree about having the med student present. Like you, I do everything I can to help out, but enough is enough. Good call.

    3. I have no comment about losting the frostie. I don’t even know what to say, where to start, what to think….

    4.”He feels confident in ruling out the sperm, and since tests and the lap show my ute looks ok, he pretty much rules that out too. But I had to respect him for saying he couldn’t be SURE it isn’t the ute, that there is just no way to be positive.” Ok- this is exactly how my conversation went with Spandorfer. I am happy he said this to you, too. Spandie said that sure, everything points to the eggs b/c usually a ute issue “hits you in the face,” but he can never say that a GC will be what we need, instead of donor egg. There is just no definite test.

    5. “The difference between the words SUSPECT and KNOW is so HUGE, though. One thing that makes IF so damn difficult is the constant unknowingness, the perpetual search for an Answer. If you let them, the Why’s will kill you.” I seriously couldn’t have said this better myself. This statement sums up EVERYTHING to me.

    6. The PGD issue. Ok, as you know, I am in the same boat. What will PPD really tell me? Will it just confirm what we already suspect? Just like you, Spandie recommended against PGD. I think the risks of the bx outweight the potential benefits, plus they can only check a handful of chromosomes. However, as you know, I chose to go forward with it b/c I needed more information. Not closure, just information, and found out about CGH. At this point for you, I would for sure forget about PGD and only do CGH if you were considering genetic testing. The assumption goes that if the eggs come back normal, but the embryo is not normal, than it’s the sperm…if all comes back normal and it still doesnt’ work, than perhaps it’s the ute…if the eggs come back crap, then great, we know for sure that DE was the correct route.

    Of course, most arrows point to the eggs in situtions like this, and as Dr. S said, it’s absoultey reasonable to move forward on DE right now than with a GC. So, that’s why I am doing both CGH and the DE wait list at the same time. I think calling Cornell and getting that started is a great idea and I know will make you feel better.

    Love,
    Sunshine24

  12. Crap! I don’t have time to finish this . . .but the first half – so much like what we went through . . .why pgd wasn’t an option and all that.

    Take care . . .will check back soon.

  13. Kate, I finally have time to respond to your blog! And what a big decision you have come to in the past few weeks since I last checked in. I hate that you have to get so in debt to have a chance at what you want. But I like that you still have options and you are keen to get proactive and change your circumstances.

    Donor egg in Australia is hard to come by. You could be at the top of the list and still be waiting years or forever. People just don’t donate. Today a close friend of mine offered me her eggs. I am seriously considering this blessing. Just have to do the whole letting go of genetics scenario first. I don’t want to throw away my chance at motherhood just because my children won’t have my eyes, my smile, a blood connection. Do I?

    Every step of this journey I have felt like “this is the hardest thing I have ever done/hardest decision I have ever made. But they just keep getting harder. Or deeper into the philosophical quagmire. Sometimes I just have to wonder – how did I get here, to this point, to even be having to think about this stuff???

    Wishing you all the best for the next step in your journey. xxxx

  14. What about your Sis? Is she still willing to donate?

    It is tough to move on, but the time comes when you can’t keep doing the same thing and hoping for different results. It’s too hard emotionally even if the finances are there.

  15. Kate-Been thinking about you……please keep writing and I will keep on sending good thoughts your way…..I am going to post this quote over at mogo for the girls to see. “If you let them, the Why’s will kill you” b/c that really totally makes sense out of every situation, esp IF. Hope you don’t mind……xoxoxoxoA


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