Friday, November 6, 2009

Meeting with the Colorado wizard

The first thing that struck us as we walked in the front door of the Colorado clinic was the attention to detail - each magazine, every plant, every tile - down to those around the edges of the walls, was perfectly positioned. There was no clutter, not even on the receptionists' desks. Information flowed efficiently between staff members. It was obvious that someone had put a lot of thought into everything from the design of the building to the systems of how various levels of staff communicated and how patients were funnelled through the clinic to reach their appointments. It was quite something.

After meeting briefly with a nurse, we were led into a consultation room. One entire side wall was lined with copies of research articles available for patients to take. Immediately this gave the sense that this clinic desired us to be informed about our situation. In detail. Which is very different than my New York RE (who I love, but who tends to be rather vague on the details, leaving me to go dig them up myself in the medical library).

Dr. Schl. entered not long after we sat down, wearing scrubs beneath a lab coat. And he got right down to business. We filled him in on everything that had happened between the February phone consult and now. Two more IVFs, two more miscarriages, diagnosis and surgery for stage III endo, etc.

And he basically toed close to the line of what he had said before on the phone with us in February. Except he said now we have a bit more data from the two additional miscarriages. His basic message was that we probably don't make any normal embryos, and that whether this is due to my treatment for cancer or some other factor is something we’ll likely never know. He said that through cytogenetic testing, we've been able to demonstrate these abnormalities three times, but that the only way to know across the board for sure is to look at the embryos themselves.

He was complimentary of our clinic here in New York. Said he knows all of our doctors and has respect for them and that if we’ve done five cycles at the clinic we've been at with no baby to show for it then we probably won’t end up with a baby with him either, because they’re really good at my clinic. I appreciated the confirmation that our clinic is one of the top ones, but of course, hearing that we’re likely screwed was not exactly what I was hoping for.

He spoke calmly and in a low tone throughout the meeting. He seemed pretty unflappable. He wasn’t nervous, wasn’t trying to sell us. In fact, at first, Will and I thought he was trying to dissuade us. He said something to the effect of “You’ve done 5 IVFs. No one can say you didn’t try.” This meeting was the first thing scheduled in our day of appointments and we looked at each other and considered just calling it a day and catching an earlier flight back.

Ultimately, though, Dr. Schl. stated that it was reasonable to give things one more try and that this would give us very important data - and maybe a baby. He seemed to think it was much more likely that we would end up with data leading us to choose donor egg, but left open room for him (and for us) to be surprised. And basically he said we’ll have good information no matter what happens if we cycle. If we cycle and I don’t even make blasts, he says that’s our answer right there – go on to donor – our eggs are too damaged to even get to day 5. If we do get to blast, we can test them and then we’ll know what we’re dealing with. He also said that it was difficult in my case to know if I can get to blast because my clinic has only ever tried to go to blast the first time with my eggs (and that cycle I did transfer two blasts and get pregnant). Especially since we’ve done coculture the last two times, which can only grow embryos to day 3, we really don’t know what my embryos are capable of. Interesting. What I most liked to hear, though, was that if I have a good number of eggs and don’t make any blasts in the Colorado clinic, then we have our answer. Maybe not an answer we like, but an answer.

When we asked him his thoughts on doing a high dose IUI, he said he thought it was not a good idea. That if we didn't get pregnant, we wouldn't be able to pinpoint why and if we did get pregnant we were just rolling the dice again - and he suspected we would likely miscarry again and spend months in the getting pregnant, being pregnant, and becoming unpregnant process. He felt that with IVF with microarray, we can get a good batch of embryos, know that they've fertilized, and see what happens exactly. It was honestly helpful to hear his opinion on this. It was fairly convincing.

The other interesting thing that Dr. Schl. said was about our most recent loss, which was a triploidy (three full sets of chromosomes instead of two). Since this was most likely caused by two sperm fertilizing an egg, we were told here in New York by multiple sources that this is a totally random event that won’t recur and has nothing to do with our chances. Dr. Schl. disagreed, saying that it is still an egg issue and that my egg allowed two sperm to enter, meaning that it was defective. He also thought that given that this is coupled with our other aneuploidies, and given my cancer treatment history, we might be more prone to polyploidy than other patients. Great.

Throughout the meeting, Dr. Schl. only cracked a smile once. I told him that our clinic was aware we were headed out to see him and that they were willing to monitor my cycle in NY. And then, when I told him I thought they were probably more than happy to do the monitoring so that I could stop messing up their stats and instead start messing up his stats, he smiled. It was brief, but it was definitely there.

So that’s the what’s what. Not exactly hopeful. But it’s where we are at. It was sobering to hear Dr. Schl.'s take. Not as devastating as it was a year ago, and not unexpected. But it wasn't easy, either. The fact that we could even sit across a table from someone telling us that it is likely that we will not succeed and not burst into tears is amazing. Just a year ago, we were still so, so hopeful, and were devastated when we spoke to Dr. Schl. by phone. This time, we just nodded and sighed in resignation. What a difference a year makes.

Wow - this post turned out to be a lot longer than expected. Sorry about that.

More on the rest of the work-up soon, in particular the meeting with the geneticist.


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  1. Thanks for the inside look at CCRM. I'll never make it there unless I win the lottery (and it's kinda harder to win when I never play. LOL!) Anyhow, enjoyed reading about it.

  2. It sounds like a really worthwhile trip, and it's somehow reassuring to hear both confirmation of things you already knew, as well as some new ideas. Also, it's sooo nice that they were organized. I love (and respect) that!

  3. You're making me miss the old wizard! I feel like going back and doing another cycle!! :-)

    Sounds like a great discussion, and you're right - if you don't make blasts at the CO clinic, then you'll have your answer. To my mind, having an answer makes it easier (at least for me) to be able to process and move on if need be. Ambiguity kills me!

    Good luck as you proceed on your next steps!

  4. Good description of interactions with the Wizard. I really like his calm, honest and blunt demeanor, although I know he scares the living daylights out of many.

    And I'm all for answers, one way or another. I'm hoping the magic lab (which I think is really the magic behind the wizard) can work some of its magic on you. Crazier things have been known to happen.

  5. Absolutely fascinating to read about your visit, and I thank you for sharing it with us. I've always been curious about the great and powerful place that is CCRM! And this little glimpse is so interesting.

    I'm sorry your dr. wasn't more optimistic, but I'm so glad that he was so competent and knowledgeable and everything else.

    Hoping CCRM proves to be "great and powerful" for you, too :)

  6. Wow. I think this actually sounds like a great visit. No smoke being blown, but possibilities to explore. I'm excited for you - one way or another, it looks like you might actually get some - gulp - answers.

  7. It sounds like it was a good meeting even if it was not exactly what you wanted to hear. I have been wondering if I should go there. It sounds like a great place.

  8. Answers are always good, even if not the ones you want. Hang in there.

  9. I just had the "how does triploidy reflect on egg quality discussion with a friend on FF the other day. One of my six embryos that actually "fertilized normally" last cycle at CCRM ended up coming back from the CGH/MA testing with quadriploidy. Anyway, I've been relatively pleased with CCRM. I have a different doc, whom I actually really like precisely because he answers all my questions. With science. However, I do have to say that once you become a patient there, you realize they're not as organized as they seem. They have too many patients and you will get the best cycle by being informed and staying on top of your own treatment... and not being afraid to be your own advocate. That said, again, I'm pretty happy there. I truly believe that FLC is as good as it gets.

  10. I'm with Sprog, I think there is a lot of good stuff that came out of the visit. Looking forward to the next installment :)

  11. I really like hearing that this meeting didn't leave you in tears. We count our victories differently now, don't we? I actually don't hate all pregnant women anymore.
    I skipped over IVF with my own eggs because I could get pregnant with IUI just not stay pregnant. So IVF with my own eggs wasn't really going to get me to my bottom line - baby. Doing IVF with donor eggs gave me much more reason to hope than knowing it was unlikely to be any different, but it just might! I hate low odds, but if you've got the cash and emotional stamina - go for it!

  12. That's interesting about what he said about not making blasts there...I'm doing my second CCRM cycle (fifth overall--you might know me from my other blog but I'll leave it at that) and I have a different doc. My doc feels that some women, though not the majority, might not make blasts even at their fabulous lab but it doesn't mean they might not get pregnant using day 3 embryos. At least, we're banking the hell on that ourselves because we didn't culture ours to blasts. But they're all individual doctors with their own opinions, but I just thought I'd throw that out there.
    At any rate, good luck with whatever way you choose to go. I've been through five cycles and know it isn't easy, no matter how you slice it.

  13. Very interesting. I'm kinda surprised he didn't try to push polar body testing on you, but on the other hand, I'm glad he didn't. I'm glad you are getting another clinic to take a look at your embryos. Sometimes, I think that makes all the difference, though, like you said, it may not be the answer you were looking for. The only way to know for sure is for them to see your embryos.

  14. answers are good, when you can get them. that has to be tough though, being willing to put yourself through that. wishing you well, wherever this may lead you.

  15. I love meetings like this - no BS, straightforward and to the point, but with proper explanations, not just "I am the doctor, do as I say" :)

    And of course, I love how organised they are (my clinic is the same) - can also be very irritating when you want to buck the system :)

    All in all, i think you got lots of good information from the wizard and am looking forward to reading the rest of the story!

    P.S. where do you get the time for such detailed blog posts? LOL

  16. Hey Mo thanks so much for posting this in so much detail, I agree with the other comments that it at least seems like you are making some progress. I really hope it works out for you !! (((HUGS)))

  17. It's odd how something can be helpful to hear and simultaneously just blow, all at once.

    I ached a bit reading that, vicariously. Even if it did tally with my own take on the mutliple aneuploidy situation.



  18. Thanks for writing on this. I am debating making a similar visit and it's great to hear what it was like for you. I'm glad that you're narrowing down the range of options and the level of uncertainty, even though it's so, so hard. Wishing you all the best.

  19. Loving this Mo...thank you for the details. For those of us with many many failed IVF's under our belt and wondering what the next step-this is helpful.

  20. It sound, in a word, very containing.
    And as we know, from containment comes linking, and linking leads to thinking and feeling, and lots of psychic integrity.
    When do you cycle?

  21. It sounds, in a word, very containing.
    And as we know, from containment comes linking, and linking leads to thinking and feeling, and lots of psychic integrity.
    When do you cycle?

  22. Sounds like a productive visit. I'm all about getting answers, even if they aren't the ones I want to hear. Makes things a little less gray I guess. I think you and Will are doing a great job being advocates for yourselves. It really does help to get as much information as possible before making a decision.

    Good luck as you decide what the next steps will be.

  23. They sound great. Didn't blow rainbows up your ass, but gave you hope that one more cycle will give you some concrete answers that you may well need in order to figure out where to go from here (if it didn't work).
    I have heard that they have a stellar lab, so if anything can get your embies to blast and give you a fighting chance, they'll be it.
    Can't wait to hear your further thoughts. I would also be damn impressed with a place that provides appropriate journal articles to their patients. Like you, I need to do that kind of reading to be comfortable with decision-making. I can't tell you how many articles I've read about cervical length and PTL and all that jazz, let alone all the research I did before on stims of various sorts. I even made a huge spreadsheet of all the femara and/or gonadotropins for stims for IUI, so that I could push my doc into what I thought would give us the best chances of success before bailing on that and heading to IVF. I'm sure I drive doctors nuts.
    I have no doubt that you guys would be able to stay on top of your own cycle, even if they are a busy place, and make sure nothing falls through the cracks.
    Good luck coming to your decision... You guys are tough (and have a wicked sense of humour)!

  24. What a great synopsis-- I think he;s right, no matter what, you would know more than you do now. And they are the best with the microarray technology, and if I could Mo, I would.

    Are you thinking you'll go ahead there with that plan?

    no matter what, I hope you will ALL be happily surprised.

    good luck Mo,
    nothing easy about any of this, darn it.


  25. I hope he's proven wrong and this next cycle yields beautiful, healthy blasts that implant for the long haul! Cheering for you!! xoxo.

  26. Sometimes an answer is all we are looking for. I'm glad he was realistic with you while also offering a little hope. We might WANT answers but we NEED the hope to keep going.


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