Wednesday, February 27, 2013

Limbo

There are a lot of difficulties associated with having a failed cycle.  Of course, the most difficult is accepting the fact that your 'babies' didn't make it.  Grieving that loss (or in my case, those losses) is excruciating.  And then, once you start to move on, you're faced with the difficulty of waiting.... waiting for your period to come (to only then be faced with a visual of your 'babies' having died), waiting to start whatever is next and waiting for your hope and faith to be restored (though, I'm not sure it ever is restored completely). 

Right now, I'm waiting.  I'm in limbo.  Since I'm still at my dreaded sales conference, I haven't had much time to really stop and think about what has happened to me... again.  I feel it though.  Boy, do I feel it.  I feel it every time someone mentions their child at home and every time a new colleague asks me if I have any children.  That's a heart breaker.  I mean, really... Asking someone if they have children seems to be the new 'how are you?'.  I'm astounded at how easily that question rolls off peoples' tongues...  And how I've realized that I'll probably never, ever, ask someone that question for the rest of my life.

Anyway, I'm also in limbo over what's next.  You see, I received confirmation of my failed cycle on Monday afternoon.  My doctor, I think, was more bummed than I was (remember, I already had six days to react to this devastating news) - she told me that she really believes "in her heart" that this will happen.  Comforting?  Yes.  Doctors don't have to say that.  But, am I assured?  No.  My doctor finally said that there may be an underlying issue with my infertility (thank you God!  I've been wondering this all along!).  Yes, I have a high FSH.  My eggs are old and their quality isn't great.  This is absolutely evidenced by the limited number of eggs that have been retrieved during my IVF cycles.  BUT, the thing is, my embryo quality is always good and sometimes even great.  After eleven pretty darn good embryos failing to implant, my doctor thinks that maybe, just maybe something else is going on.  Perhaps a genetic abnormality?  Or, maybe it's an endometrial lining issue?

During my phone conversation with my doctor, she mentioned a study with very, very limited research suggesting that when replacing estrogen with lupron (over the course of a couple of months), that it somehow recreates your endometrial lining (please forgive me if this extremely elementary desciption is lacking.  I've had literally no time at all to research this in the least due to being at my work conference all week).  My doctor told me that if I had a normal FSH, then she'd absolutely recommend moving forward with this 'protocol', BUT, with my high FSH, she's hesitant to formally recommend going this route because apparently this 'protocol' can initiate menopausal symptons.  And someone with a high FSH doesn't need any help with regard to getting a head start on that front. 

So, my doctor wants to run this 'experimental protocol' by her colleagues, who meet weekly, to discuss patient cases.  Yay for me.  I'm a freak of nature case that gets to be discussed by multiple doctors, because my situation is too out-of-whack for one, extremely educated, well knowledged doctor to make a decision/recommendation on her own. Ugh.  I feel let down and not very reassured.  My doctor let me know that she'd be in touch soon with a formal recommendation.

.................so, where does this leave me?  As soon as I hung up the phone on Monday afternoon, I knew exactly what I had to do next.  And that's go to CCRM.  My husband and I are finally in agreement that this is absolutely the right decision for us.  We need the best.  Period.  If a genetic abnormality is what we're facing, then we want CCRM's world renowned embryologists to perfom those tests.  If an 'experimental protocol' is what's next, then we'd prefer that recommendation to come from the best of the best.

I'm waiting for my cycle to start and plan to call my assigned nurses to schedule our ODWU once it does.  I am beyond scared.  There is so much to figure out, logistically and financially.  There's a lot on the line.  But, I believe that we'll learn a lot more once we meet with Dr. S and his amazing staff in the next couple of weeks.

This is a huge step for us.  But, I believe more than ever, that I need to put everything I have into this.  I'm praying that this is the right next step and that CCRM will give us the answers that we need.

9 comments:

the blogivers said...

Wasn't familiar with what CCRM is so I just googled it - looks like they have their stuff together, that's for sure! Praying along with you!

JenS said...

CCRM was also going to be our next stop. I really hope they are able to figure it all out for you.
I was just realizing recently that I never ask people if they have kids and I don't even ask my married, childless friends if they want kids. I am curious, of course, but now I am so aware that they could be having problems and don't want to talk about it that I don't want to bring it up.

Erika said...

I definitely need to do some research on CCRM...glad you feel like you have a plan, though! I know that must be somewhat of a relief. Hoping that the rest of this conference passes quickly so that you can get home to the husband. And The Bachelor, let's be honest. :)

Amanda Greavu said...

I'm really proud of you for going the CCRM route. I know it's scary and overwhelming, but I think you'll always wonder unless you go to the very best.

There is about a 1 percent chance that we are moving to Colorado come June. I'm making Sam apply because A- I'm from Colorado, B- Colorado > Georgia, and C- if we are going down this IVF road, we might as well go straight to the top!

If you do go out to Colorado, make sure to take a day to enjoy it. You'll never breathe cleaner, fresher air or feel more relaxed. Well, I don't know if Colorado can overcome the anxiety of IVF, but still, it's beautiful, and awesome, and glorious, and majestic.

Sarah Ish said...

There is no such thing as "unexplained" infertility...everything has an explanation, but not everyone can answer the questions, so they slam a label and make it somehow your"fault". I'm glad you are moving forward with CCRM, where they are willing to question and explore, rather than continue the protocol. Keep up the hope, we know you'll be the best mom any kids can ever dream of:)

Jessah @ Dreaming of Dimples said...

I should make t-shirts for us to wear out that say "don't ask if i have any children!!!! I don't."

I do think you'll be in good hands at CCRM. We've always said we are only doing IVF once but if for some reason we it doesn't work and we decide to do anther...I'd go there as well.

Hugs!

Aramis said...

I've read so much about CCRM, and they seem to be such experts in the high FSH/low AMH/diminished ovarian reserve cases, that I know you'll be in good hands. I'm just jealous that we're so far away that we can never cycle there! Good luck.

nogoodeggs said...

this post is called limbo but it souns like you have made a big decision about your next step!! exciting! cant wait to hear about the protocol that CCRM reccomends! i know that this is a shitty time, but I cam hear the tiniest bit of optimism and excitment for CCRM left in your 'voice'!

Jessica Rondeau said...

Stumbled across your blog tonight in search of info for CCRM. I relate to your posts so much and completely understand how horrible "limbo" is. My husband and I are beyond fortunate to have an almost 3 year old daughter courtesy of IVF but our journey to add another has been difficult. We just had a "perfect" fet transfer that will most likely end in a miscarriage (no heartbeat, yolk sac on ultrasound.) After 3 failed cycles in a year, I too, am sick of hearing from my wonderful doctor that she believes it will happen. Something bigger is wrong and like you I feel CCRM may be the path. Thank you for such an honest blog, I know this takes a lot of courage to tell the world how difficult infertility really is! Best of luck and will continue to follow your journey!

 
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