Friday, December 23, 2011

(Yet another) talk with Dr. Schl.


I spoke yesterday by phone with Dr. Schl. in Denver. Originally this call was set up to discuss whether it made sense to go forward with my sister as an egg donor, but once we received her AMH results, we knew that we wouldn't be cycling with her. Then the question became: How serious is this for her? What do I tell her?

At first, Dr. Schl. said my sister's situation wasn't so serious. Although she wouldn't be a good ART candidate, she would only need a single egg a month to have a baby, and at age 31 the quality would likely be fairly high. He said he estimated that she has a 50% chance of being able to have a child naturally and just needs to get started immediately. But then I told him that she is single, that she is not ready to have a family any time soon. His tone changed. In that case, he said, she has a big problem. In his opinion, she only has a couple of years left to have a child if she wants one. Ugh. Ugh, ugh, ugh. He said if she is not ready to have a child now, she should definitely consider freezing her eggs if she wants a child in the future. He recommended two clinics for this - his and a clinic in Atlanta - as the only two places to go.

I asked what I should say to her, how to phrase it, and shared how terrible I feel that we've uncovered this concerning news for her. He offered to speak to her by phone if I/she would like and explain to her the results of the tests, that he would like to take some of the burden off of Will and me by doing that. Which was a really kind offer, and which would be a huge relief. So I will be talking to my sister over the holiday and trying to arrange this. I wish all of this were not the case, not the reality. But I am grateful to have some expert help in framing the news for my sister so she can make whatever decisions she would like to about her future.

I also informed Dr. Schl. about what had happened with the first donor we chose. Told him that she looked great, had 33 resting follicles, everything panned out and we were good to go....and that then she turned out to have an inversion on chromosome 9. Those of you who know Dr. Schl. know that he is on the dry and non-emotional side, so I was quite taken aback when he said, "You're kidding me!!! An inversion on chromosome 9?!" I assured him that yes, that is what had happened, and remarked that Will and I have had a knack for hitting on rare and unlikely events during the course of our attempts at procreation. That's when Dr. Schl. said, "Wow! I wouldn't want to buy a lottery ticket with you two!" Um, ahem, no. You probably wouldn't want to. Typing this, I realize that it might sound like he was being insensitive, and maybe he was, but I actually found his response - his rather emotional response - validating in a strange way.

We talked about some other technical details on testing donors and the possibility of me getting an endometrial biopsy done soon that I won't bore you with.

But the other main topic we covered was the question of what I should do next. I am nearing the end of a grueling two month course of Depot Lupron. I will not have a donor ready to cycle with any time soon, it doesn't look like. So I asked him the unanswerable questions: What does he recommend I do at this point? Should I transfer back some of our genetically normal embryos? Or should I wait...does he think I need a surrogate?

His answer was interesting. "I think you will do fine with donor eggs."

Ooookkkkaaaayy.... I took this to mean at the time that he was voting we probably don't need a surrogate, despite what he has said at other points in time. But that my eggs are pretty cruddy, genetically normal or not.

He said that we can tell the embryologist what to transfer if we decide to transfer back some of our normals into me - maybe not transferring all of my very best ones all at once so that we have a bit of a backup plan in the (very likely seeming) case of failure.

After I got off the call with Dr. Schl., I remembered that at the beginning of the call he had said that the Denver clinic's computers were down. So then I wondered if he'd had my chart with him when we spoke, and whether he'd remembered exactly who we are and what our history is when advising me.

Hoping so. These are pretty big decisions facing us.

Emotionally, I am in a very bad place. It took everything I had not to burst out crying several times during my call with Dr. Schl. Things feel fragile and tenuous. I am so afraid of making the "wrong" decision but also feel that doing nothing is contributing to how down and out I've been feeling.

Hard to believe that Christmas is a couple of days away. I feel like we'll be going through the motions a bit this year with me in this dark place and Will grieving the loss of his father keenly.

Wishing you and yours a Happy Holiday. Hoping that 2012 brings all of us the things we have been wishing for most, which of course are most likely not things at all.

Mo

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28 comments:

  1. It's so awful to be finding this out about your sister's eggs. I'm glad the doc is willing to talk to her and explain exactly what her options are. It would suck to be in the position of telling her this but not being able to answer all of her questions.

    Crap, that's super scary that he was talking to you when the computers were down. I think the lottery comment is a good indication that he remembers your history, right?

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  2. I know what you mean about him being non emotional, I agree with PP that he knew who he was talking with :-) It's great that he offered to talk to your sister too, that was really nice of him.

    So sorry things don't go smooth for you guys, I've felt the same way in regards to us so many times and it's just so frustrating... Hang in there!

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  3. I think it is great he is willing to talk to your sister for you, perhaps that will really ease the burden and she will understand how much you care to have arranged this for her so she can have all her questions answered.

    I'm sure he knew who he was talking to and remembered all ya'll have gone through. I have a feeling that y'alls case would really stand out and he would not advise you if he wasn't sure.

    Wishing you both nothing but the best this holiday and praying that 2012 is filled with miracles for you.

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  4. Oh my. Nothing is easy in your case. And your sister's situation...ugh. Maybe this is one of those blessings in disguise you hear about though. Maybe she'll go forward with freezing her eggs, and you'll have spared her having a journey like yours. We can hope.

    I'm also always a little leary that the docs don't remember who they are talking to, but I tend to only think that when they say something that just plain sounds wrong. It sounds like he's acknowledging that a lot of this "is what it is" though. That said, and since you have invested your time already in the depot lupron, I think I'd be tempted to go through with a transfer. But, still, I know it's a huge decision.

    I hope you find some peace this Christmas season and that 2012 is YOUR year. You've certainly journeyed more than anyone ought to...

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  5. Firstly, forgive me if I'm repeating anything I've posted here before. I know how horrible these decisions are because we've been in the same place. I did one cycle with genetic testing and got one normal egg out of five. The resulting embryo was slow-growing. I had a chat with a Prof of embryology at our clinic and he told me that eggs can be genetically normal - and result in genetically normal embryos, initially - but still have other abnormalities. I think I'm right in saying that the cytoplasm (like the "white" of the egg) can be faulty and it is this that drives the development of the embryo and "glues" the genetic information together as the cells divide. If it is faulty, then the division can slow down and stop and the genetic code can break down. After our unsuccessful CGH cycle, I did wonder whether we should try again, whether one shot with one embryo was enough. In the end, we didn't have the money or the energy to take that risk as we'd have nothing left to try donor eggs if it didn't work. I suppose that there was a small part of me, as we went into our donor cycle, that wondered if I should have tried harder with my own eggs and wondered if I was making a mistake. In the event, the embryos created in the donor cycle were so stellar and the early stages of pregnancy so different to my six "own eggs" pregnancies, that all my questions were answered. What I'm trying to say is that if your donor cycle fails, then you still have your embryos to try with yourself or a surrogate. If it works, it might answer your questions about your egg quality. And if you're anything like me, if it DOES work, you'll love your donor baby so much, you won't ever question your decision to do a DE cycle again. Good luck with it all - and with your chat with your sister!

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  6. I can see where it would be nice to have someone who has seen it all acknowledge that your journey has been spectacularly arduous.

    I hope 2012 brings all sorts of wonderful breakthroughs.

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  7. OK maybe I'm just making things more confusing but frankly I'm confused about Dr. Schoolcraft saying your sister's eggs could make a baby with a 50% success rate. So why couldn't they do that for you, too? If he thinks they're good enough to freeze they should be good enough to use for your cycle. Granted, I know they like to see quantity for donor cycles but he stated himself that the quality is most likely good and while I totally get that it would be a costly 'experiment' but imagine if she proceeded with a cycle for you guys, saw how she stimmed, made a few quality eggs for you that turned into quality embryos then she would have seen the process firsthand to know if she even wanted to try to freeze her eggs for her own use in the future. I guess I'm just saying this because I know how much you would like to use your sister's eggs because she's most genetically like you... Am I just asking stupid questions here? Is the fear that she would only get 8 eggs? Cycles can work with a low yield as long as they're quality and he said hers are likely good quality... OK I'm rambling but I am just want an end to this pain for you. You deserve nothing less than to have some happiness and light. If my comment is off the mark please ignore it, I'm not trying to confuse, only help. Thinking of you during the holidays, thinking of Will and the loss of his father, wishing things were easier. HUGS from Texas.

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  8. I am so, so sorry that the options just keep getting harder and more complicated for you guys. Since I don't have any useful comments on the medical front, I will just say that I have to believe that you will find an answer at the end of all of this. The determination that you've shown is so inspiring to me. Sending lots of good thoughts to you.

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  9. Glad Dr S was willing to talk to your Sister to answer the technical questions and explain things clearly. Since we are local, we met with Dr S several times and he never cracked open a computer - so I think it was probably a non issue.

    I can relate to your comment about making the "wrong" decision, but in this business, most of it is a blind guessing game that involves some luck too. You need to trust your gut instincts and know you made the best decision given the facts you had at the time.

    Hope you have a wonderful holiday too!

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  10. Sigh. I do believe there are two entirely distinct components to an egg that dictate how things will go. It is likely that bad quality eggs are missing vital components in the cytoplasm and these are also more likely to contain genetic errors, big or small. But the two issues ARE distinct.

    I strongly suspect that one of the major causes of infertility (manifesting in either failure to get to the implantation stage or a miscarriage in around the first 5 weeks) are driven by cytoplasm errors.

    I really wonder how things would go if they took the nucleus of a fertilized egg and injected that into a egg of another person, but here I digress. Would be a interesting q to ask the doctor though. I think that's what they do with stem cell research, but I don't know if it's been explored with fertility.

    This is *possibly* given everything, where your issue lies. I'm sorry Mo, I really, really am. It's bad news to both surrogacy and trying again yourself. Sometimes the hardest part is just accepting an unpalatable fact. You guys have been through so much, I'm just sitting here trying to find the right words and failing.

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  11. Its so frustrating that doctors don't share what they think you should do and then when they do, they are vague about it... and how do you know that they have your best interest at heart? and that they are not just out to make another buck off of you? urrrggh.

    I think you spared your sister from finding out this horrible news down the road. Could you imagine..she falls in love and wants to have a baby a few years from now and then its too late. She goes thru IUI x # and then IVF x # and then struggles with the same tough choices you are dealing with. At hard as it is to be the bearer of bad news, she can do something about it now. I am sure we would all be grateful had we known before we embarked on this journey that it was going to be this hard. I wish I could have froezen my eggs in my 20s. I might have a family right now. Anyway, Happy Holidays to you, your hubby, and your sister. Wishing us both better luck in the new year :)

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  12. How difficult to have this information about your sister, info she has no idea about. Ugh. Wishing you a 2012 that offers peace with whatever comes. Really, that's what I wish myself and all of us...

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  13. I'm wondering a bit like myTwoLines: what if your sister responds better than expected if she goes ahead and freezes some of her eggs? Might you then decided to do a cycle with her anyhow?
    I do think that, as hard as it is to have to give your sister the news, she's better off knowing now and being able to decide whether to try to freeze eggs or not while she has a chance at making some good ones.
    I sure hope 2012 brings you your much-deserved and long-awaited baby, however that baby is conceived and brought into the world. May the perfect donor be found, and quickly! (Or, if you do decide to transfer one or more of your normals, may it finally be the golden embryo that makes it to a live delivery)
    Wishing you both all the best.

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  14. I hope this dark place simply becomes the contrast to the bright and happy things of the next year. Don't give up Mo and Will.

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  15. Hi Mo - I've been reading (read: lurking on) your page for a couple of years now but I'm not sure I've ever commented. You and Will have been in my thoughts and prayers since I started reading. I'm sorry this path to a child has been SO difficult!

    I'm de-lurking to tell you that, in all honesty, I really think you did your sister a favor.... If she met the man of her dreams and was SO excited to make babies in say...5 or 6 years and couldn't, that would be so much sadder than realizing right now that she has the opportunity to freeze her eggs.

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  16. so, in the end, where are you now... getting ready to try with some of your frozen embryos, or waiting to find a donor? can you do them simultaneously? i really believe that you have to do something, now... at the very least, take the options of using your frozens off the "i wonder..." list- transfer with your post-depot body and see how that goes. continue lining up the right donor match, and cycle her asap, whether or not you have success with your embryos or not. cycle her 2ce and bank enough DE embryos so you have options and the ivf cycling will be a thing of the past.

    thinking fo you, and will- holidays are not a good overlap with a loss of a loved one. just get thru these next couple days... and let 2012 start afresh, with action, to get you into some poopy diapers.

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  17. Ah, Mo. Glad Dr. S is willing to chat with your sister about what all this means for her. As for you... I think the best thing Dr. G ever told me was that there is no wrong path...it's *your* journey. That's not to say I didn't worry about it, but it is somewhat liberating to know that at a certain point (where I was, where you are) you need to do what's best for you emotionally, physically, etc, if it's not so obvious medically.

    It's almost a new year, and I so hope that 2012 is your year of the take home baby. You are in my thoughts, and heart, every day.

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  18. I think SIRM NYC should also be an option for her as they also do egg vitrification and Dr. T is an awesome high fsh friendly doc.

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  19. Hi I am rare commenter also with cancer, also with infertility, though much easier path. I can't tell you what to do though I am tempted to! What I would do, would have done is do anything to get a baby! Transfer your friends embryos. They are there and ready. Any baby you get is going to feel like the right one. Use one of Denver's donors that doesn't feel like a good fit. If you get pregnant and stay pregnant you are going to have very few moments of doubt, bc it will be your baby, it will be amazing. Any choice that gets you a baby will feel right in the end.

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  20. Also per above you've given your sister a gift of having this knowledge now. It sucks but it is a gift for her to know.

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  21. Oh, my. I've been following your blog for years, but rarely comment (except with love for Moxie;). And I've just caught up on what's gone on in the last few months...
    I think it's great that Dr. Schl is going to talk to your sister. He will be able to communicate everything to her in a non-emotional way, which seems like it would be hard for a sister to do.
    I can't imagine the mental, physical, and emotional strain for you and Will individually and in the marriage. Our infertility wasn't nearly as grueling, but looking back on it and trying to decide if we want to add to our family makes me remember how difficult it was.
    That all being said, I know it's pretty taboo to give an "if it were me" statement,, and is generally more acceptable to just give thoughts and support. BUT, if it were me... and if I'd been through several losses, had a handful of embryo's, and so many years invested in this journey... I'd go with my own embryo's with a surrogate. Screw the depot lupron. Would it suck taking it for 2 months for nothing? Yes. 100%. But losses suck. And lost years suck. Pretty much everything sucks.
    Pardon me being frank. I hope it's not imposing, I certainly do not intend to be.
    I feel like you and Will are getting closer to the prize, exploring multiple routes at once. You're so close, we can all taste it. Keep fighting.
    Sending peace and comfort your way today. Merry Christmas. <3

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  22. Merry Christmas, Mo and Will (and Moxie too). I hope today brings some peace, found with each other.

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  23. Oh Mo, this is so hard indeed. What a complex situation you have, with your sister, and still some unknowns ahead of you.

    Waiting to see how all of this is going to unfold must be torturous! But it sounds like, all we need is a good fitting donor. There are still options, your cup doesn't runneth dry yet. Although it may feel like it, no doubt.

    2012 has got to be it. 2012 has got to be the year that things get sorted, that life comes to you in a way that you might have never imagined. You deserve it, no doubt about that.

    Wishing, hoping, dreaming that all of this comes together for you very soon.

    Hang in there, thinking about you.

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  24. New reader here and my thoughts are all over the place from this post.

    First on my mind is how precious this gift of knowledge will be for your sister. Although hard to hear, this information will give her insight and, hopefully, courage to advocate for herself and her fertility.

    Second is my offer of sympathy for your situation. I cannot begin to imagine how hard this journey has been for you. I hope that 2012 brings you joy and answered prayers.

    Finally, I want to share with you that I am a proven egg donor and would welcome communication, if you choose.

    My thoughts and prayers are with you this holiday season.

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  25. Maybe it's not relevant, but reading this post made me think about this recent article I read about decision making styles.

    Basically, it contrasts "satisficers" (who make a choice once they find something that meets their basic criteria) with "maximizers" (who want to make the optimal decision). It concludes that maximizers not only have more trouble deciding, but end up being less happy with their choices.


    Identifying the "right" choice can be a never-ending task for a maximizer. Feelings about which option is best can always change in the face of new information.

    Maximizers might be unable to fully embrace a choice because they cannot be absolutely certain they chose the best possible option.


    In your case, I think that any choice you make that has relatively high odds of resulting in a baby is a good choice.

    Even if it's not the "best" choice or the the one with the absolutely highest odds. Because if that path doesn't work, you can always try another one.

    But that's easy for me to say.

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  26. Niobe,

    No question about it, I am a Maximizer. I learned about this concept when studying for the psychology licensing exam and it definitely fits me to a 'T' in situations like this. Not in all situations, but in ones I deem very important...Definitely for good or for bad... Thank you for bringing this up - I think you've inspired me to do an entire post on the subject coming up : )

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  27. So complicated... Sigh.
    Some day when this all pans out for you, and it will, I am going to do the biggest happy dance for you guys!

    I hope that you are enjoying the holidays and that 2012 is an amazing and wonderful year for you two.

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