Life and Love in the Petri Dish

Gearing up

noreply@blogger.com (Mo and Will) — Mon, 23 Jan 2012 12:47:00 +0000

Sorry for the silence. Not sure what's accounting for it...I've been very busy, but that's no excuse. I think I've been a bit down in the dumps with a birthday ending in zero earlier this month that really funked me out. I survived (helped by Will lovingly whisking me away to Miami Beach that weekend - thank you, Will). Life goes on.

Although my heart really isn't in it, we made the decision to proceed with a frozen embryo transfer, so that I didn't waste the Depot Lupron I'd taken for two months thinking we were headed for a donor cycle. So I'm in the midst of daily Lupron and estrogen patches and acupuncture. I'm off ALL caffeine, including chocolate, caffeine-free sodas, and decaffeinated products (God help me). We even went back to the reproductive immunologist and so I'm on baby aspirin and I'll be starting lovenox and prednisone soon. As well as doing my first infusion of IVIG. In addition to the Denver recommendation for folks with recurrent miscarriage of pepcid and claritin. So no shortage of drugs to try to make things work.

In the meantime, we've got two lovely potential egg donors in the midst of testing. So far things look promising for both of them, but we'll see...

Frozen embryo transfer is scheduled in Denver for Thursday, Feb. 9. I wish I felt more optimistic, but maybe that would be crazy. This is my ninth transfer, after all, and still no kids. But you never know, right?

I thought it would feel better than it does to be doing something. But yeah, well...not really. Still, maybe it would feel worse not to be moving forward with something? Probably.

More to come, maybe even some hope if I can drum it up.

Mo

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This year

noreply@blogger.com (Mo and Will) — Tue, 27 Dec 2011 18:57:00 +0000

We did the holidays a bit differently this year. We almost always spend Christmas with Will's family. He has three siblings who each have a few sons, so the holidays tend to be a rather raucous affair with nine nephews and a number of adults - three generations in all. There is even a labradoodle to keep our dog Moxie company.

All good things. But as the years have ticked by and the gaggle of nephews keeps getting older (the youngest is now 3.5 and the same age our oldest would be if we hadn't miscarried), we have felt increasingly like the odd ones out. We have previously always slept at Will's parents or at one of his sibling's houses and experienced first-hand the excited children's voices and tatters of Christmas packaging flying here and there. But attending the activities year after year, while feeling so far from being able to participate in this child-focused holiday in the way we most want to, has become extremely painful.

So this year, we tried something different. We still came to most of the family-focused activities, but instead of sleeping at one of Will's sibling's houses and experiencing the Christmas morning frenzy, we stayed at a rather fancy hotel. We found a really lovely one overlooking the water, of course with the chief requirement that it be boxer friendly. Below you can see Ms. Moxie decked out at the hotel in her "reindog" antlers, resting on the comfy bed the hotel provided and with the food and water bowls they also kindly put out in the room in advance of our arrival. She's giving the camera her forlorn "Woe Is Me" look, but don't be fooled. She had a great time.

Staying in a hotel worked so much better for us. We were able to be a part of everything but also take some space for ourselves, caring for ourselves in the process. And despite this breaking a bit with the traditions Will's family has in place, our desire to have a little bit of a buffer seemed to be understood and well received.

All in all not a terrible holiday, despite missing Will's father intensely and wishing that we were in a different place with our own infertility struggles.

We hope you had a good one, too.

Mo

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(Yet another) talk with Dr. Schl.

noreply@blogger.com (Mo and Will) — Fri, 23 Dec 2011 18:53:00 +0000

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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One foot in front of the other

noreply@blogger.com (Mo and Will) — Mon, 19 Dec 2011 15:55:00 +0000

Wow, it's been a rough time lately. Thanks for your thoughts and comments on our situation. We've really appreciated it. It still completely sucks to find out that we can't use my sister as an egg donor and further that her fertility status is worrisome. It sucks even more that this comes on the heels of finding out our perfect egg donor turned out to have a rare genetic abnormality (but only after we'd sunk a huge amount of emotional capital and an even huger amount of money into her and her agency). The holidays are approaching and with them, the growing sense of loss that we are celebrating yet another child-centered holiday, surrounded by our families' children and without children of our own. And my 40th birthday is just around the corner...creeping up like an enormous, dreaded milestone to mark five years of trying for a baby, six pregnancy losses, and no end in sight. And, not to whine, but geez being on Depot Lupron for two months makes dealing with all of these things inexorably harder.

Add to those difficulties the fact that the stars are aligning (or misaligning?) workwise so that I have been dealing with an unprecedented amount of psychological crises the past week clinically, including coping with a serious suicide attempt last weekend, having to provide a large-scale crisis intervention for a group of people following a gruesome murder, and needing to help one of my trainees who is struggling to deal effectively and competently with a patient in increasing distress. All in a week's work, I guess, but boy it's been a tough time.

Will and I spent the weekend trying to climb back out of the emotional hole we have recently found ourselves in. And for me, I knew I had to do something to de-stress massively. We brainstormed what would feel most immersive, what would call us to be present, what would allow us to just be mindful for a time and let all these problems sit to the side for a bit. And we came up with two ideas. One was going ice skating Saturday - which turned out to be very fun. The second was to go indoor rock climbing on Sunday, which was super tough and scary (I'm deathly afraid of heights), but ultimately liberating and enthralling. Several times at the beginning, I thought I would give up, that it was too frightening, that I wasn't strong enough, or agile enough, to find the next handhold or foothold, to keep moving forward. But I stuck it out and reached the top of the walls several times. I even learned to not panic when letting go and allowing the rope to hold my weight as I was lowered down to the ground. I think there's a metaphor in there somewhere, but I'll leave it to you.

Mo halfway up the wall

It was great to have a break from all the stresses and losses facing us this weekend. But we didn't want to wait too long to begin to process and problem-solve this situation we find ourselves in infertility-wise. Right now things feel hopeless, but I know the situation is only truly is hopeless if we give up.

So, we have devised a multi-pronged attack on what we have officially dubbed the "End Mo and Will's Childlessness Campaign."

Rather than continue to scour dozens of agencies ourselves for the donor we are seeking, we signed up with a service that searches agencies for you. We spoke to the owner late last week, sent a bunch of pics of me and described what we are looking for. They go out there and do the footwork and try to find a number of donor candidates who are currently available who would be a good match. We've found one who we are highly interested in, and a few runners up...no one who seems a "perfect" match yet in terms of the mix of qualities we hope to find (of course, we know no one would be a "perfect" match...but still...). We are hoping to get a few of them started with basic blood testing in the hopes that at least one of them will demonstrate the ability to actually pass the Denver screening process. We are only taking another donor to Denver who we are fairly certain will pass the screen.

We continue to search the Denver database...still not so hopeful about this and no good matches there for us at this time.

We have a call in to a NYC clinic to begin the process of getting on their donor recipient list. Not super optimistic about it, but figure it would maybe allow us a way out of this if all else fails.

We have a phone appt with Dr. Schl. on Thursday. This was originally to discuss using my sis as a donor but now may center on how and what to tell her about the news we found out about her fertility. We also want to discuss the pros/cons of transferring my own embryos back to me (since I've been doing Depot Lupron prepping for a transfer) and whether there is any point to me trying to do one last IVF cycle to make more normal embryos, which would make it feel safer to risk transferring some of our embryos into my body... we may or may not attempt this...but if not...we need to come to closure with it.

Our potential gestational carrier, should we find out I can't carry even a donor egg pregnancy, is getting her medical records together to send to Denver for review (G_d bless her for this), so hopefully we can start to get a sense if she would be eligible.

So we're working on things on a few fronts. It feels good not to sit still, but feels terrible if I let myself stop and just experience the emotions of it all. I'm back to feeling somewhat uncomfortable with using an egg donor at all and deeply sad that it looks like my family line may die out with my generation if it turns out neither my sis or I are able to reproduce.

One foot in front of the other. Hopefully we can find a way out the other side. I am so, so ready to be in a different place with this.

So ready.

Mo

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My sister's AMH results are back

noreply@blogger.com (Mo and Will) — Thu, 15 Dec 2011 22:17:00 +0000

Well...we got my sister's AMH results back.

The news is not good. It is in fact decidedly bad.

Her AMH level is 0.19.

The Denver clinic would like to see an AMH of at least 1.2 for a donor, so 0.2 is really not even close.

Obviously we will not be using her as a donor.

Here is a chart on AMH values:

Ovarian Fertility Potential	pmol/L	ng/mL
Optimal Fertility	28.6 - 48.5	4.0 - 6.8
Satisfactory Fertility	15.7 - 28.6	2.2 - 4.0
Low Fertility	2.2 - 15.7	0.3 - 2.2
Very Low / undetectable	0.0 - 2.2	0.0 - 0.3

I feel terrible, absolutely terrible. Because I will now have to talk to my 31-year-old sister and explain this news, news she would never have to know if we hadn't asked her to donate. Based on what I can gather, this, in conjunction with her borderline high FSH (9.78) and low antral follicle count (7-8) mean that she would need to try to have children immediately if she wanted them. And she is currently not ready to do this. And my understanding after talking to the Denver clinic is that the likelihood of her succeeding - even now - even with immediate IVF - is slim.

We will pay for her to have a consult with a reproductive endocrinologist if she wants to talk to someone about what all this means.

But I just feel awful for bringing yet more bad news to someone, this time someone I love.

And us? Well, who cares about us, really. But back to square one we go.

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Fall 7 times, stand up 8 - infertility edition

noreply@blogger.com (Mo and Will) — Thu, 15 Dec 2011 17:02:00 +0000

Here in seemingly never-ending infertility-land, Will and I had another "falling down" experience yesterday.

My sister told us a week ago that her doctor messed up the AMH test, delaying moving ahead, and so we had that redrawn last weekend, much to my frustration. I'm ready to get this show on the road, people! I want to get all the information together to give to Denver to get their opinion - should we cycle with her or find an anonymous donor? So at the time of the re-order, we ordered the AMH test stat...and it is now a week later...with of course no results yet...

For the past two weeks, I've also been hounding my sister (nicely, I hope) for her karyotype results - and so she finally got in touch with her doctor yesterday.

This is when her doctor shared that - oh, the karyotype? - oh, well, actually there had been a mistake with that test too and it wasn't done.

My sister supposedly had all these tests drawn on November 17. NOVEMBER 17!!! And to clarify, Will had ordered them himself - she had a prescription with the test names written down, and her doctor failed to honor what the prescription said - or tell her that they couldn't be done through their lab - or whatever was the reality. Unbelievable!

I feel like I've lost a month of my life here waiting for these results. We've been waiting for these so we can talk to Dr. Schl. and see if she is a reasonable donor to use, and if not, to regroup and move on. Again.

And now we find out that her doctor didn't run the right tests and then on top of that, didn't bother to even inform her?! Aaaaarrrrrgh!!! It is so frustrating to feel like there are so, so many obstacles in our path. I feel this especially because we are pursuing third-party reproduction. I can't believe how difficult this is. I feel like the universe should cut us a break already - as though I'm due some sort of ease in things since I've bent my psyche inside out to accept giving up on having my own genetic child, to accept the possibility that I won't be able to carry my own child. I know it doesn't work that way, but ugh.

On top of this, all of my feelings are magnified while I am on the dreaded Deport Lupron, both because that drug makes me extra emotional and because I AM TAKING IT SO I CAN DO A TRANSFER!@! (Bang head repeatedly on desk). Which makes me feel like the biggest moron within a 20-mile radius.

So here's what I think of this "Fall seven times, stand up eight" proberb right now...I really don't feel like standing up again. Not one bit.

What do I feel like? I feel like giving up. I feel broken. I feel incensed. I feel helpless. Why is it so hard to find our way out of this? Why is it so challenging to even get to a place where I can make an attempt to get out of this, like being able to do a transfer?

I know I will stand up again, because that is what I do. And really, what else is there to do?

But really.

Really? Does it really have to be like this? Couldn't something work out already?

Mo

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“Fall seven times, stand up eight”

noreply@blogger.com (Mo and Will) — Wed, 14 Dec 2011 20:07:00 +0000

This quote is posted on the website of our friend who has stage 4 cancer. The one whom I wrote about at the beginning of November, who was intubated and expected to pass away soon.

Well...he didn't pass away. He eventually got extubated, which we thought was a miracle. He managed to get out of the ICU and into a regular oncology ward room, which we thought was amazing. Then he had the feeding tube removed, then he went to rehab, and now this week, he is back "home" or at their temporary apartment at least, since they came all the way across the country to get him help here in NYC.

We can hardly believe it - it is incredible. Outstanding, a miracle.

Make no mistake, he is a very, very sick man, but we are so pleased that he is going to hopefully be able to survive longer than everyone expected - and in the process have more time with his wife and 4-year-old child. And hopefully now that he is home, he can die on his own terms, however he wants to have that happen, surrounded by his wife and toddler and mother and sister, in as comfortable and as dignified a way as possible. And that is really good news within the context of this terrible situation.

Not exactly sure how this quote applies to our friend's situation - he has certainly fallen and stood back up multiple times, showing incredible perseverance. But I think now his journey is about something else. He could choose to try to "beat" the cancer if that's what he wants to do, and although that's impossible, it wouldn't be a bad stance to take. But I think it would be just as honorable and courageous to do something else. Something like, choose to fall as gently as possible, or choose to give oneself permission to fall and not worry so much about the standing again part.

I guess that's sort of the question that comes up for me when I read this quote: what does a proverb like this mean when you are facing not being able to keep standing up? Where is the line between "giving up" and accepting a tragic and unwanted reality?

I don't know the answer. But however our friend navigates the coming days and weeks, we wish him good management for his pain. We wish him as much time with his wife and daughter as possible. We wish that he feels viscerally the love of all those around him. We wish him peace.

Mo

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To bris or not to bris, that was the question

noreply@blogger.com (Mo and Will) — Tue, 13 Dec 2011 15:00:00 +0000

One of my good friends who was pregnant had her son last week and the bris was this weekend. It took place in another state, so we had every excuse not to go. This is my friend who has been so gracious about being pregnant while we are not pregnant and fear that we may never again be pregnant, so I knew she in particular would understand if we declined.

So I thought about it, and Will and I talked about it. He said he'd rather be shot in the head than have to go.

Ok, it was fairly clear how Will felt about it...

I, on the other hand, surprised myself by wanting to make an appearance and show our love and support. This woman is my closest friend from my PhD program. I wanted her to know we are happy for her, even as we ache for ourselves. And actually I thought a bris might be a fairly protected way to do this. There would be the buffer of a lot of people so I wouldn't have to interact too much if I couldn't handle it. If I started to cry during it, people would just think I was being sensitive to the pain of their little boy.

Also, on a level not about my friend, I thought it was important to go. As our infertility journey has gone on and on, we have shrunk away from so many friends who we used to enjoy seeing, stopped going to events that we used to participate in. As all of our friends have gone on to have children, we have become increasingly withdrawn, and increasingly sad. I wanted to try to go to this event, because it is the first of many milestone events for my friend with her son. And if I skipped this one, it would be easy to skip the next one, and then the next one, and then...before I know it, it will be much harder to break the pattern of avoidance and see this friend, keep her in our lives, not conflate my pain with her joy but rather try to let both exist - one not spoiling the other.

We ended up deciding to go, and I'm glad we did, even though it was super hard for Will. We made a weekend of it, finding a boxer-friendly hotel and staying overnight in this other city. For Will, though, seeing the grandparents there, and hearing the special prayers said at the bris for them, nearly brought him to his knees with the grief that his father will never meet our children, that he will not have his father's presence and support. This first holiday season is a difficult one without Will's father. Compounded too by our seeming inability to move forward toward building our family.

We both feel it was the right thing to go, but there is so much sadness and longing over here in the Mo and Will household. We can only hope for happier days ahead.

Mo

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Pondering

noreply@blogger.com (Mo and Will) — Fri, 09 Dec 2011 17:46:00 +0000

From Firefall Vision's Etsy Page

So my sister needs to go back to the lab to get the AMH test redone, because somehow the lab messed up the sample. And she didn't feel that she could do that until the weekend because she already was late to work once due to getting the baseline ultrasound and antral follicle count done.

In response, I wondered wryly (but refrained from asking) how in the world she could do a whole IVF cycle for us, which would require daily bloodwork and almost-daily ultrasounds and would surely make her risk lateness to work if her boss is already raising objections.

But why say this? Because really, it looks like we may not get to the place of her doing an IVF cycle for us.

We aren't ruling it out, either. Will and I are waiting on the AMH results and then will have a regroup with Dr. Schl. in Denver and get his thoughts. But I have to say, things don't seem overly promising.

Not dismal, maybe either, but not overly promising.

In the meantime, we're taking a few steps back and reconsidering our options.

Could we take the donor we already fell in love with, the one with the rare chromosomal abnormality, to another clinic, do CCS testing on her embryos, and use her despite the inversion on chromosome 9? Would we want to? Would any clinic let us? (Interestingly, the agency is still listing her as available to donate... now also saying she has "proven" fertility and has been a "prior donor." Seems a bit disingenuous to me). She is perfect in every way but for the slight chromosomal issue, so mildly thinking about it.

Do we want to just proceed with a transfer of our embryos into my body and hope for the best? Leaning toward this at the moment. This is a surprise, as I thought we would never do this. However, originally, our NYC RE and Dr. Schl. suggested that trying another transfer of our embryos in my body was the most reasonable option. It's just that we didn't think we could take another loss - and what if those are the last chromosomally normal embryos that I could ever make? Can we survive another loss now? Maybe. Can we tolerate it if we try this and fail and then have nothing left for a gestational carrier? Thinking on this.

I'm in month two of Depot Lupron. It would feel good not to "waste" these two months of Lupron I've been on. It has not been easy, and I hope it hasn't been for nothing.

Perhaps if transferring our embryos into my body didn't work, we could throw a huge IVF stimulation party, cycle my sister, the donor, and me all at the same time and see just how many embryos we could make.

I'm kidding.

Mostly.

These are the fertility-related things rattling around in our brains. Today, at least. Tomorrow brings another AMH test for my sister. We've requested the results stat. Not sure how fast that will bring them, but we are hoping for quickly.

We're tired of waiting in limbo.

Mo

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Not looking so good

noreply@blogger.com (Mo and Will) — Wed, 07 Dec 2011 19:30:00 +0000

We have a few more of my sister's lab results back:
FSH: 9.78
Estradiol: 38.7
LH: 8.18

Apparently, the lab messed up the sample for the AMH test, so she will have to have this redrawn (Aargh! Bang head on desk)

The Denver clinic has a cut-off for FSH for donors at 10, which is awfully close to what my sister has.

For comparison, at age 38 (seven years older than her, and after cancer), my Day 3 FSH was 5.5, my Estradiol was 33.2, and my AMH was 1.4.

I'm starting to feel like the infertility grim reaper, spreading terrible news about others fertility status far and wide. We haven't talked to my sister about what any of these numbers mean and won't until we speak with Dr. Schl. But it seems not so long ago, that our genetic inquiries wreaked havoc on the anonymous egg donor's happy thoughts of future reproduction with the news that she had a rare abnormality. Ugh.

Once we get the AMH results back, we will schedule a regroup with Dr. Schl. to discuss, but I'm thinking this isn't looking like a very good idea. Seems like if this was my body, I'd of course proceed with IVF, but don't know that it makes sense to try to use my sister as a donor when her fertility doesn't seem so promising.

If we hadn't had such a long road already, maybe we'd want to gamble on it and hope that we'd be lucky (ha! Us lucky?!), but geez, folks, what we really want is to get out the other side with a child in our arms, and I'm not sure that this is looking like a smart way to get there anytime soon. But maybe I'm misinterpreting things?

Any thoughts? Am I reading this right? What would you do in a situation like this?

Hard to believe we may be back to square one again.

Mo

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How important is the antral follicle count?

noreply@blogger.com (Mo and Will) — Mon, 05 Dec 2011 15:13:00 +0000

My 31-year-old sister went in to her local fertility clinic for her baseline ultrasound and FSH day-3 testing today to see if she can donate eggs to us.

And apparently her antral follicle count (AFC) isn't so great, given her age and our desire to use her as a donor. They saw 4 on one side, and 3 to 4 on the other side.

Ugh.

We are still waiting for the estrogen, FSH, and LH levels to come back today. And we are waiting on her AMH levels too.

We'll have to repeat all this in Denver if we decide to go that far...but what we don't want to have happen is for my sister to go out there and fail the screening like the anonymous donor did. Then she'd be out 1-2 sick days and we'd be out another $6,500 + her flight and hotel costs. So we were trying to get a good sense ahead of time that she would pass.

Needless to say, after hearing the antral follicle count was this low, Will and I are having a sinking feeling about this.

My sister, on the other hand, was blissfully unaware that this was not great news until I told her this morning that the Denver cutoff is usually 12 for a donor, although they might make an exception since she is my sister.

One thing that is puzzling us is that we think my baseline count has never been so great (like 6 on each side or something), and when stimulated, I crank out 18, 19, 22, 25, eggs, like a veritable egg factory (not that it has done us much good so far...)

Another thing is that my sister just got off of the birth control pill a little over a month ago...wondering if that could affect her AFC still?

So I'm a bit confused about how much weight to place on this.

So now I turn to you...how correlated has your antral follicle count been with your egg retrieval numbers? And how old were you? It would be great for us to hear (the good, the bad, and the ugly) and would also be a good resource to others who may stumble on this page down the line.

Maybe this isn't "meant to be." Maybe we aren't "supposed" to go with my sister? But I'm not even sure what that means anymore, really.

Feeling sucker punched, again. Seems like we can't catch a break over here.

God, I hate this whole process.

Mo

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Depot Lupron: what doesn't kill you makes you...hotter?

noreply@blogger.com (Mo and Will) — Wed, 30 Nov 2011 15:00:00 +0000

I just started month two of the dreaded Depot Lupron to treat my stage III endometriosis and presumed beta-3 integrin deficiency. I don't know about any of you out there who've taken this, but for me this stuff is poison to my body and my mind. It honestly ranks up there at the top of the list of all-time unpleasant infertility-related activities for me.

I feel just completely taken over by Depot Lupron. This time most of the first month wasn't so bad physically (which is why you haven't heard me whining before this). For the first three weeks, I didn't seem to have many mood effects and experienced really no hot flashes. If it hadn't been for the prodigious three weeks of bleeding, I would almost have thought I'd gotten a bum batch of the stuff.

But all that changed about two weeks ago. Suddenly, the bleeding stopped, and instead I felt...hot and sweaty...had heart palpitations....and felt a profound bleakness descend (as evidenced in my last post).

Because I struggled when I took Depot Lupron last summer, I asked Dr. Schl. if there was anything I could take that would help ameliorate the mood and physical symptoms (apparently there is something, called "add-back therapy" that replaces a bit of the progesterone that your body isn't making). I asked for it not just for my sake, but for poor Will's and Moxie's sake. Not to mention the sakes of my patients and of the populace of the greater New York City metropolitan region at large. So this time, once the hot flashes and blueness descended, I started taking small doses of synthetic progesterone. It hasn't eliminated my symptoms, but I think it does lessen them a tad (hard to tell, but I haven't had to change clothes in the middle of the night because I'm soaking wet, or gotten super irritated at anyone, or killed Will, or taken a mental health day...so I think so).

So these little white pills seem to be helping, but the original prescription didn't include enough pills to do this twice (originally, we were only doing one dose because we were planning to cycle with the egg donor in December). Given this, I called my nurse. You may remember, I haven't been thrilled about her from the beginning of our donor egg adventures...

When I reached her, I asked for a refill, and she said ok. But she also said (1) that I am the only patient she has ever heard of ask for a prescription for add-back therapy at the Denver clinic, and (2) that she thought it might decrease the effectiveness of the Depot Lupron for dealing with endometriosis and beta-3 integrin deficiency (I can't remember her exact words on this, but she raised it as a concern of hers). So I asked her to check on this and please get back to me.

I got off the phone and realized I was left feeling vaguely uneasy after our call. Why tell me I'm the only patient to ever request this? Her comment made me feel like I was asking to be coddled. Once I realized that's what was brought up for me, I was annoyed. Why shouldn't I be able to take something to make this a little bit easier if it's out there? Why shouldn't all of us?

And then on top of that, why opine that taking the add-back therapy might reduce this awful drug's effectiveness? Because the only thing worse than feeling like crap while taking this damn drug would be taking this drug and feeling like crap for no reason. And why would Dr. Schl. have prescribed the add-back therapy if it could cancel out the effects of the Lupron treatment?

Sigh.

Yesterday I got an email from her that Dr. Schl. said all is fine, nothing to worry about, take the add-back, the Depot Lupron will still do its job. So really, was all that necessary?

It's been an occasional pet peeve of mine throughout my medical journeys, this implying you are high maintenance for asking to have something suck just a little bit less. When I had lymphoma in my twenties, I had a mediport surgically implanted under the skin on my left upper chest to receive my infusions. For every chemotherapy treatment, the nurse would place a needle (called a Huber needle) through the skin that covered the port and connect it to my IV line. You should check it out, folks, because this is no ordinary needle; it's more like a thumbtack. And so it hurt. Especially because it was done every other week and your tissue really doesn't heal well when you're getting chemotherapy. I knew that there was a new cream on the market, a topical analgesic called EMLA. So one day I screwed up my courage and I asked if it could be prescribed for me. And I was told "That's only for pediatrics. We never prescribe that for adult patients." Which silenced me immediately. I felt like a big baby. Flash forward years later and I've since met many an adult cancer patient who uses EMLA to reduce port access and IV pain (usually patients in the medical field who know to ask for it).

Similarly, after our first and second pregnancy losses at 7 and 8 weeks, my then-ob/gyn advised that I should have my D&Cs in his office sans anesthesia or any pain control beyond ibuprofen. So I did, twice, because I felt like such a wimp asking to be knocked out, when he'd made it so clear after I asked for an OR procedure that it should really be fine - and his other patients didn't mind it. Actually, I found the in-office D&Cs to be terrible, both physically and psychologically (especially because one time the equipment malfunctioned and he had to manually scrape the lining of my uterus). And consequently, I no longer use that ob/gyn. But why make it so tough?

So, yeah, obviously this phone call touched a nerve for me. And Depot Lupron has the effect of exposing all of my nerve endings and making everything feel...well...hotter. This nurse isn't so bad, but I do wish she'd keep her opinions, especially when they aren't based on scientific evidence, to herself.

Looking forward to finishing the dreaded Depot in about a month. Really hoping my sister checks out and can cycle so we have something to transfer, and then hoping that these two months of suffering help implantation go at least a little better than it might have.

I wanted too to say thank you guys for all of your comments and thoughts on the last post. It helped, it really did, to read that you all get it, or that you might not totally get it but you realize that. It means so much that you've stuck with us even though the tough times, that you're still reading and rooting for us. We appreciate it more than we can say.

Mo

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Lament of the end-stage infertile

noreply@blogger.com (Mo and Will) — Tue, 29 Nov 2011 04:22:00 +0000

The holidays are a tough time of year for Will and me. November is the anniversary month of two of our pregnancy losses - our first miscarriage and our sixth. It is a time of taking stock of the last year, and of time passing in general: of where we are versus where we wish we were, where we had hoped to be.

The holidays are a time when we are surrounded by family and friends, which is wonderful. We are lucky to have the friends we do and are grateful to have our families. But it is also true - and exquisitely painful at this point - that nearly all of our family and friends, literally almost all of them, have children or are expecting (even the infertile ones).

Two of my close friends are currently pregnant after struggling with infertility. One of them reached her due date yesterday. She and her husband underwent a solid year of IUIs before becoming pregnant. She lives out of town and has been very compassionate in her dealings with me. (For example, although we are close, she did not invite me to her baby shower. And I was grateful for this.) I spoke to her over the weekend and almost had the sense she would not have talked about her pregnancy at all if I hadn't asked. And when I did (of course I did!), she told me how she was feeling physically and how excited and scared she and her husband are. And then she went back to talking about her new hospital position and parents and sisters and her apartment. Throughout our conversation, this friend very kindly did not gush about her pregnancy. She did not tell me how everything up until this point in her life pales in comparison to preparing to welcome her firstborn, that having a baby infuses her whole life with meaning. Which I greatly appreciated, which I imagined was tough not to do, and which allowed me to gush for her and on her behalf.

My other dear friend is just at the beginning of her second trimester. She also underwent several IUIs and had two early pregnancy losses. And then she did a single IVF and got pregnant. And unlike us, she has stayed pregnant. She is just at the point of buying new clothes because her old ones don't fit. She is elated; she is still terrified after having had two losses; she is right where I would expect her to be. And this friend, God bless her, very much wants to convey to me how - although she's pregnant and seems to be staying pregnant prior to having a baby - she is Just Like Me.

Only problem is, every time she tries to join me, I feel ever more alone. I love this friend, but I want to tell her that she is not like me. She is on her way out the other side and will almost certainly have a baby, a baby who is her genetic child, a baby whom she will deliver with her own body. I want to tell her that 33 with no cancer history is not the same as 39 status post chemotherapy. I want to tell her that although she has deeply grieved her two pregnancy losses, she cannot imagine what it feels like to have had six losses. I want to gently say to her that her one experience of IVF doesn't feel anything like going through IVF seven times.

But this isn't quite right. It is actually not at all what I want to tell her. Because in truth it's not about how many losses she's had or how old she is or how many procedures she's undergone. It's something more ineffable.

It's the fact that she did one IVF and actually thought it would work - and it did. She has struggled and suffered and grieved but she has not had to so keenly feel the sharp pain of hope fading at each IVF failure, after each successive loss. But in spite of this, and for reasons that are unclear to me, she desperately needs to assure me that our experiences are the same.

What she doesn't - and cannot - know, thankfully, is the gut wrenching place of hopelessness, the place where the doctors at the best clinics look you in the eye and say they don't know how to advise you, that the prognosis is grim, despite looking so promising on paper. The feeling that there is no way out to the other side, no matter how much of your savings you use up or what clinic you go to or what diet or acupuncture regimen you try. That chromosomally normal embryos won't work, that even a perfect-seeming 23-year-old egg donor won't help, because there is always still something wrong, some amorphous and unnameable thing that will trip things up and make your dream of parenting unattainable.

This is the place where Will and I often live now. When we face it squarely, our pain is so intense as to be immobilizing, almost like staring into the sun. The feeling is blinding, and it doesn't help us navigate a way out of the situation we find ourselves in. We gaze straight into our deepest fears that maybe we will never be parents. Maybe there is no "out the other side," even though bearing children is my biggest hope and desire since I was a young girl. We have times of hope, of thinking we can still succeed somehow, and we are strong-willed enough to keep trying to move toward a solution (such as having my sister donate eggs) even if that solution seems improbable and filled with peril.

I want to make it clear that I wouldn't expect my friend - or most anyone, actually - to understand our situation fully. It is an incredible gift when someone "gets it," and many of you readers are among those whom we have felt truly understand (thank you, truly thank you, for that). It's this friend's continual attempt to empathize by comparing the two of us that is so painful.

It is an unfortunate truth that as Will and my infertility has gone on and on, we have become more withdrawn from others and felt more alone. It is increasingly difficult to go to the many child-focused activities we are invited to. And it is hard to be honest, even if others do want to know how we feel, because we know our sadness is tough for them to witness.

My sister is still waiting (seems like forever) for her period after going off of birth control pills. Will is looking at agency donors again as a back up (I just can't bring myself to). We've perused the CCRM database but have not found a good match for us there. We are still corresponding with a potential gestational carrier.

So things are nowhere near the end, but gosh it sometimes feels like it. It feels impossible to imagine coming successfully out the other side, impossible to imagine getting past this painful place in our lives.

They've barely begun, but already we are looking forward to the holidays being over. And we are wishing with everything we've got - even as we fail to be able to imagine it - that this time next year finds us in a much different place.

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And the psychologist sez...

noreply@blogger.com (Mo and Will) — Tue, 22 Nov 2011 13:09:00 +0000

Will and I met today with a NYC psychologist who specializes in infertility to discuss using my sister as an egg donor. We wanted to get a sense of the issues we should make sure to consider that we might be overlooking.

We really liked this psychologist. Were impressed by her (and as a fellow psychologist, I can be sometimes be a tough sell). She was a good mix of smart and practical and just empathic enough without overdoing it, and she kept us on track when we started to veer.

Her bottom line was fairly simple, and she stated it a few times in case we were slow learners.

She said emphatically that barring a substance abuse issue or major mental illness in my sister, using my sister as our egg donor is an ideal next step, a potential solution to the very tough situation we find ourselves in.

She reiterated variations on this theme a few times throughout the meeting. That assuming that my sister is on board with this idea (and my sis is downright enthusiastic), and assuming Will is ok with it (he is), this is a wonderful, wonderful option.

How nice to hear. I'd half expected to hear the creaking sound of Pandora's box opening and of us being faced with cold, hard issues we'd somehow missed in our exhaustive attempts to think through every nook and cranny of this decision.

But no. The psychologist said it sounded really good (even with our faults and my sister's imperfections). And that it shouldn't substantially change our relationship with my sister.

Her take home message was that my sister's ability to donate eggs to us would be a gift, an amazing gift. And one that we might need to work a little harder on just learning to receive and say thank you for, rather than analyzing it and then analyzing it some more.

The psychologist gave us permission to stop all of the second guessing as well as my specific tendency to think I need to decide for Will and me and also somehow decide what's best for my sister, too.

The psychologist offered to meet privately with my sister when she's in town sometime and then meet with the three of us to discuss again as a group if we wanted. But basically, she gave us the psychologist's version of her blessing.

Still processing this, but generally it feels like a huge weight has been lifted off of my shoulders. Like we've been given approval to go ahead, and that I will not harm my sister by accepting her offer, or scar my child, or any other negative and scary outcome.

Feels like a big relief to get an expert's opinion that yes, this makes sense, that yes, it is a good idea.

Now let's just hope Marina can pass through the gauntlet of testing that faces her and come out the other side successfully.

Here's hoping.

Will and I at the psychologist's...
Can you guess who is who?

Mo

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For your amusement

noreply@blogger.com (Mo and Will) — Sun, 20 Nov 2011 12:35:00 +0000

Made me chuckle (and a little sad, too) thinking of all the time we've spent doing IVF cycling and me shot up with depot lupron, or recovering from procedures, or on pelvic rest waiting for my beta...all the while poor Will waiting patiently, his sperm starting to look like this...

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Sister egg donation musings

noreply@blogger.com (Mo and Will) — Thu, 17 Nov 2011 17:58:00 +0000

Still working over here on the veeeerrrry sloooooow process of getting my sister screened as a potential egg donor for us. She's getting some blood work done locally in the next few days and Will and I are slated to meet with a psychologist Monday to talk about what we (and my sister) should consider before moving forward.

We saw my sister this weekend and she is still cool as a cucumber about donating her eggs to us. Basically said she made the decision a few years ago before she approached us the first time and hasn't flinched or second guessed since then.

While we're on the topic of sister egg donation, I wanted to share a New York Times "Modern Love" column from 2010 that Mommacommaphd recommended.

I like some of the questions it poses about using a sister as a donor (in this essay, it's for her gay brother and his partner): "She was young and unattached. She wanted her own children but wasn’t ready. So was she prepared for someone else to have her child? And how would she explain this particular brand of baggage to a potential husband someday? Most of all, would she be satisfied always being Aunt Susie to this child and never, you know, the m-word?"

I wish I could follow this couple and find out how it all works out for them and their twins.

But just to read this slice of their life was really nice, and I recommend it for anyone considering using a relative as a donor. Made me feel like it's not a freakish choice but could actually be, well, just lovely.

Mo

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Remembering

noreply@blogger.com (Mo and Will) — Fri, 11 Nov 2011 03:05:00 +0000

Today we are also remembering, one year ago today, the loss of our sixth pregnancy.

Can't believe it was a year ago.

Can't believe we are still in this mess.

Can't believe we are still nowhere in terms of taking a next step.

Taking some time to grieve this loss, and the hits to each of us emotionally as individuals, the impact on us as a couple.

Here's hoping with everything we've got that by this time next year, we are out the other side.

Mo

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What would you do in our position? The Denver staff weighs in

noreply@blogger.com (Mo and Will) — Thu, 10 Nov 2011 14:11:00 +0000

After E.'s karyotype came back and we learned we couldn't use her as our egg donor, I spent a long time on the phone with the genetic counselor in Denver.

We talked about the different paths in front of Will and me, potential frontrunner options being: transfer some of our normal embryos back into me since I'm on depot lupron and prepping for a transfer anyway, find a new egg donor - such as potentially my sister, or go straight to a gestational carrier.

The counselor and I mused about what a great story it would be to transfer our own embryos after this donor fell through and have at least one healthy child from the five embryos. That it would feel like it was "meant to be" that the donor fell through (a concept I don't so much believe in usually). It would be a really lovely ending to a harrowing four-and-a-half year story. Because those embryos are so precious and are basically irreplaceable, I thought of maybe putting in a couple of the more wonky ones, in particular, one or two of the day 7 blasts.

At some point in our conversation, I told the genetic counselor that she is one of the few people who truly understands the medical complications of our situation - my cancer history, the reality of having five frozen chromosomally normal embryos that may or may not be able to make a living child, and whether or not that would need to happen in someone else's body or not. I asked her, since she understands the nuances of our history, what she thought she might do next if she were in our shoes.

She said she didn't know. She also said she thought it was a really good question.

She said what she wanted to do was write up a one-page summary of our history, embryology reports from our blasts, and the options before us, and she was going to convene a meeting with the head of genetics (who also has a PhD in embryology) and Dr. Schoolie himself and let them talk about what they recommend, how they see the situation, etc.

I was so, so moved by this, nearly brought to tears. It's things like this that make me feel the Denver clinic truly has our backs. Our situation still stinks, but it is helpful to know this.

So they met, and then they got in touch. Everyone agreed that we face a tough situation with no obvious answer.

Forced to give an opinion, the head of genetics said she didn't know what to recommend, but felt strongly that if we wanted to transfer our normals, we should transfer the best two or three. Problem is, there are only really two good ones, the rest are not so hot. So it seems terrifying to risk them in my body when we don't know if I can carry a baby to term.

Dr. Schoolie said what I thought he would say (and what my rational side had already told me): nothing about our situation had changed. He thought Will and my idea of trying an egg donor was a very, very good one, one that could scientifically answer the question of whether I can carry a baby or not. Given this, we should just gather ourselves emotionally, pick a proven donor from their in-house pool, and run this experiment asap. (No problem!!) Sounds good from a scientific perspective but misses entirely the fact that it is not so easy for us to find a donor we feel comfortable with. God help us, but we're skittish about this; it took months of searching through multiple agencies to find E. And...well, we know how that turned out. The sister donor idea, he said, was also not a bad one, assuming she is fertile enough and that it makes sense for us and our family psychologically.

Bottom line, there were no clear cut answers, but it was really great to hear their thoughts. Even more than this, though, it just meant so much to Will and me that they took the time to discuss our case and weigh in on it. This is one of those reasons why it would be very, very hard to leave the Denver clinic. They get that we are a tough case with potentially multiple reasons why conception and carrying has been such a struggle. Their medical care is excellent. And then on top of that, they really want us to succeed.

I'm not sure there is much more I could ask for from a clinic. (Unless maybe they could relocate to NYC. Now that would be pretty cool.)

Mo

p.s. My sister has passed the paper and phone screen...we are trying to get some of her bloodwork drawn locally as soon as possible and then get her in for a one-day-work-up. Fingers crossed.

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Motherhood as a shade of grey: could my sister be my egg donor?

noreply@blogger.com (Mo and Will) — Wed, 09 Nov 2011 16:55:00 +0000

Several of you guys are really good guessers! Much better than I was at this game! When I'd imagined the acceptance rate for egg donors at the Denver clinic, I'd guessed something like 20%, which I thought sounded really strict...but turns out is really lenient, or more lenient at least than the Denver clinic people are. So a shout out to those who guessed the true number: Only 5% of people pass the screening process to donate eggs at the Denver clinic. Kudos to Nikki, Strong Blonde, and Anonymous for their correct guesses.

Now, when I think about this 95% rejection rate, I wonder just who are these people who are applying? I fantasize that like maybe half of them really have no chance in the world of making it anywhere (sort of the medical/genetic analogue of someone with a C or D average applying to Harvard). Like maybe many of them are 37-year-old chain smokers, or were born with six fingers on each hand, or have parents or siblings with medical histories longer than mine... probably not, but maybe...

We've started looking at the Denver in-house donors, but seriously? Kind of slim pickings there. And then the photos of these women as two to seven year olds - 1987-1990ish vintage, usually small and dark and grainy - make it impossible to tell what each donor might have looked like as a kid, let alone get a sense of how their features ended up later. So we aren't ruling this avenue out and will keep checking back on Thursdays, but we weren't really drawn in so far, despite these women's obvious genetic, medical, and fertility superiority to me and the general population.

In the meantime, we are moving forward with my sister as a possible donor. She is 31 years old and single, and lives about four hours away. I'm going to call her Marina here, which is something I used to call her when she was about three years old, when her favorite story was Hans Christian Andersen's The Little Mermaid.

My sister looks remarkably, incredibly like me, including features, posture, mannerisms, voice. As in, when I went to see her while she was studying abroad in Europe, people in the neighborhood where she lived set eyes on me for the first time not knowing I was coming or even that she had a sister and said, "You must be Marina's sister." At her recent graduate school commencement, a professor came up to her and asked if her sister was there. She said she saw me from behind and heard me speak and just from that was absolutely certain that Marina and I must be closely related. We have even been asked if we are twins (although this seems like a stretch). Not in a while, mind you, but very heartening when you are 8 years older than your sibling. Probably tough for her to hear, though! We also share a similar sensibility, similar wry sense of humor, similar ways of speaking and moving through space and waving our hands in front of us when we talk. We aren't identical by any means, but definitely sisters through and through.

Perhaps having someone who is so similar to me physically and psychologically is part of what has made it hard to go the third-party reproduction or adoption route. I like this added connection, enjoying looking back through old family photos and seeing various family members' features reflected in ourselves and our relatives. You are guaranteed to share 50% of your sibling's genes, and our child (Will and mine with my sister's egg) would have the same grandparents, and same relations throughout the extended family, which seems good for the child from a "Who am I?" perspective. The child would in fact be at least 25% related to me and so if you think of relatedness and parenthood as a Venn diagram, both Marina and I would share relatedness to the child, which is a comfort to me, and seems like it wouldn't be so hard to adjust my mental image of what immediate family is and include her in the genetic parenting picture. Sort of a "motherhood as a shade of grey" rather than a black or white you're either the genetic mother or you're not.

Because she's my sister and will always be close in our lives, using her as a donor would also be more complicated than using an unknown donor. We would want our child to know from the beginning that Marina played an important role in bringing them into our lives and realize they might feel a stronger attachment to her for it than they otherwise might.

Which often feels wonderful, and occasionally feels a little scary. One of the scarier 3:00 am thoughts is: What if my child prefers Marina over me? She is after all, younger and definitely the cooler, more fun, more dramatic, more artistic, let-it-all-hang-out sister. I'm the overachieving, overresponsible, more subdued one (and who in the world would prefer that?!). Whether she donates her eggs or not, Aunt Marina is likely to be the favored Aunt. And I reassure myself that alas, my child would be stuck with me, and be rewarded with visits to Aunt Marina on a regular basis. I am joking about the "stuck with me" part. Mostly.

Marina has no children yet and is unsure if she wants them. We've offered to pay for her to do a cycle, freezing her eggs if she would like, and at least for right now, she is not very interested. She thinks if she does decide to parent, she'd probably like to adopt. Which is funny, right? That a genetic connection is so important to me and here she is likely able to have such a connection and really doesn't care? The world is an ironic place.

We've thought of using her as a donor since she approached us and offered us her eggs a couple of years ago, but I always held off because of all of my "What Ifs." Being the older sister, I worried that her giving us this gift might somehow cause her suffering later, or maybe she'd regret it, or maybe it would complicate our relationship in some negative way. We will explore all these areas with her and with a mental health professional, but somehow it doesn't seem so difficult to imagine anymore or so fraught with danger. Maybe opening our hearts to E. as a donor has made us more open to alternative paths in general, I'm not sure. I am sure that this seems the right path to take at this moment in time.

Here's hoping my sister can be in the Denver's 5% - or at least be deemed suitable to donate to me. They've already approved her family medical history, despite the fact that we all have six fingers on each hand and her older sister Mo has a medical record a mile long.

Mo

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Should I stay or should I go?

noreply@blogger.com (Mo and Will) — Mon, 07 Nov 2011 14:38:00 +0000

Thank you guys for your thoughtful comments - it really helps to read your take on our situation, your encouragement, and your questions. We appreciate it.

One of the questions you so thoughtfully asked was about whether we might want to leave the Denver clinic, since they are so stringent in donor screening and gestational carrier screening and preparation.

That's a good question.

Part of me is glad that if there is a chromosomal problem with the donor we wanted to use that we found it, and part of me is frustrated, since the finding is of unknown significance. But knowing what we now know, we wouldn't want to go with her without screening the embryos. And apparently, the CCS testing cannot pick up this problem (one thing we considered was seeing if we could go forward and just discard the affected embryos). Denver won't let us so it's a moot point anyway, and no other clinic we know of can do the CCS testing - even if they did, starting over from scratch with a new clinic would take a lot of time and $$$.

But going forward, the question remains: Would we maybe want to go with a different clinic?...tempting.

The problem is, the Denver clinic's stats are so darn good.

Here is a link to the top 10 egg donor clinics in the U.S. Denver is number 9 (lower than I would have guessed). But they also have a much larger sample size, so I trust their numbers more than some of the other clinics listed (and besides, they are still the closest to us of those listed...)

But really, maybe many other clinic's numbers are so close that it doesn't really matter significantly, right? So we looked in to this...There are two clinics in NYC we would consider, our old clinic and one other very reputable clinic. Our old clinic's success rate is 12% lower than Denver's (plus they don't vitrify embryos, which is really a deal breaker). The other NYC clinic's success rate is 8% lower (not as bad, but truly significantly lower, plus, we'd have to basically start over, which is expensive and time consuming). Also, have you noticed how unlucky we are? We sort of think we need the stats as much in our favor as possible.

I also looked into the best clinic near where my sister lives in case we go in that direction, since it would make her life so much easier if we kept things local for her. Sadly, the best clinic where she lives has a success rate that is 20% lower (shocking!! I'm a little embarrassed for them, actually). No way we could do that.

Based on all this, at least for now we're thinking of staying. Not totally happy with this, but don't see a great alternative either. I want to move forward as quickly and successfully as possible. I am beyond frustrated. I can't believe how difficult this is, how mired our situation feels to me.

In terms of alternate paths, we are anxiously mulling transferring some of our normals to me...so more on that soon. This scares us though, as we really don't know if I can carry or not, and at almost 40 now, I may not be able to replace those embryos (not to mention that I don't have the psychological stamina left to do more IVFs). I would hate to throw such carefully acquired and irreplaceable embryos in my old death trap uterus if there is no chance at life there, you know?

So that's where we are today, although things change frequently around here. We have emails in to the Denver clinic to find out more about the process/screening requirements involved in a sister donation and to find out the password to the Denver in-house donor pool (it would be great if we found someone suitable, although I'm not so optimistic about that since there are less than 60 women in the pool). Call also in to a psychologist for Will and me to talk to about the emotional complexities of a sister egg donation versus using an unknown donor. We want to be thoughtful about this decision, or at least screw up our kids thoughtfully, you know?

Everything remains unclear, but damn I'm trying to move forward anyway.

Mo

P.S. Guess what percentage of donor applicants passes the screening process at Denver? ...if you leave your guess in the comments, I'll post the answer soon. I think you might be surprised - I was. Known donor screening is different apparently (thank god!!), so hopefully not as steep of a hill to climb. Major kudos and a shout out to the closest guesser!

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Crawling out from beneath it

noreply@blogger.com (Mo and Will) — Fri, 04 Nov 2011 16:33:00 +0000

The past few days I've been at a conference. The same conference I was attending last year when I started to think I was losing our sixth pregnancy, which unfortunately turned out to be right.

It is hard and sad to be here again (although geographically in a different location). Hard to be reliving some of the aspects of that looming loss, and hard to swallow that we are no closer to having a family, and hard too to acknowledge that I've lost major faith that any avenue could or would work for us.

One of the things that is most difficult about our latest disappointment with the failed egg donor situation is that it just completely derails us about what steps to take next. And I am terrified that because it took me nearly a year to get on board with going with E. the egg donor that it may be hard to emotionally regroup and also hard to take the practical steps necessary to move on to whatever is next.

Because I'll tell you, I do not want to be in a hotel room a year from now still no closer to having a child. I've had that thought for years now, that the next year will be different, that we will find a way out of this, but I have to, WE have to, find our way out of this.

And so emotions be damned. I'm moving forward. Tentatively, but forward, trying to figure out what could be next. I can grieve as I move.

I've been in continued contact with the potential gestational carrier, who is just a lovely, lovely woman. The major frustration there is our clinic. They want the carrier to have three periods post breastfeeding (which she is doing until February) before they will do a one day work up, and THEN they said it will be another four months until we could try a cycle. Of course assuming she passes the frigging screening process, which I'm growing concerned no one does. And even bigger, assuming she still is open to doing this as it moves from a romantic notion to an actual possibility. Oh, and of course, clearing all those hurdles, she might not successfully get pregnant with our embryos. Ugh!!! So this is a wonderful option, but there are still many ways it might not work. And it also feels way way too far off in the distance to hang my hat on.

I talked to my sister, who offered a couple years ago to give us some of her eggs, and God bless her she is still offering this. So we'll probably start having her screened with some preliminary bloodwork to see if she might pass the stringent Denver standards. See if her chromosomes line up, check her FSH, get an antral follicle count. She is remarkably blase about all this. Remarkably no big deal, which is lovely. As we do all that, we can keep talking together - all three of us - about what this would look like and whether it's a beautiful idea of how to make a family or the most convoluted mess-your-kid-up-before-they-are-even-born idea we could pursue. And again, I doubt she'll pass the screening, because, hey, maybe no one passes the Denver screening. Or maybe I'm just jaded.

We're talking to the agency we used about whether they have someone else we should consider for a donor, someone who has donated before or at least had all the screening, who meets our other criteria. They don't think they do. One zinger they shared is that our clinic is the only one they have worked with that does karyotypes on the donor. Really?! Is that such a rare thing? So everyone else is flying blind on this? (would love to hear your experiences on this. seems a bit crazy to forego this karyotype screen). It is financially very steep to go to another agency at this point. And honestly, I'm just feeling soured on the whole agency thing in general now. Feels so risky financially and timewise. Sigh. Denver has their own donor pool, but it is tiny. Only 57 women or something. And they only show pictures from ages 2-7. So we will look at it, but I don't expect to find what I'm looking for (remember previously I looked across the entire United States and found a measly two donors I felt comfortable with). Sigh.

The Denver clinic is having a meeting about our case today, to give us advice on how to proceed. Schoolie, the head of genetics (who is also an embryologist), and the genetics counselor. I will share more news on this when I have it. It is a nice gesture - and probably won't, but maybe just maybe could lead to some clarity on which of the many roads to take.

And that's it. One thing is very clear to me, for today at least: I am just not going to sit beneath the weight of my grief for another year. I am NOT. I am crawling out from beneath it, even though I don't know what direction to crawl in. Hopefully we'll find ourselves at a destination sooner rather than later.

Mo

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Perspective check

noreply@blogger.com (Mo and Will) — Thu, 03 Nov 2011 15:22:00 +0000

I just received a call from a friend to ask advice on how to deal with an unthinkable situation.

This friend reached out to me because of my professional expertise on behalf of another couple, whom we also know.

The husband in the couple was diagnosed with a rare cancer, stage 4, in mid September. The diagnosis was out of the blue really. The couple are our age and have a 3 year old, who joined their family from China via adoption around age 18 months.

They started aggressive treatment right after diagnosis and the husband has been doing all right. A few days ago, his doctors determined he's not responding to treatment and has taken a significant turn for the worse. They had to intubate him, and he will likely pass away in the next several days.

The friend wanted to know what and how to tell the child. And whether the child should be taken to see him in ICU in this state or just not ever see her father again.

It's a tricky question and one I've sought professional advice on from child specialists in psycho-oncology since getting the call.

My heart breaks for these friends, for their impending loss. My heart breaks for their child, who has already lost two birth parents, and then a set of chinese foster parents, and now will lose her adoptive father as well. It is just so incomprehensibly, completely unfair. Not fair at all.

For us, this terrible situation also offered us a perspective check. Our situation is rough. And I am grieving our latest setback and am beyond frustrated at our situation. But our situation is not this horrific. We will survive. We will go on. And although I can't see my way out the other side right now, we WILL somehow get there, I hope, if we can avoid giving up.

If you could keep this couple and their child in your thoughts and prayers, I would ask you to.

Thanks.

Mo

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You have an inversion on chromosome WHAT?!

noreply@blogger.com (Mo and Will) — Tue, 01 Nov 2011 15:39:00 +0000

The email just came in with the final word from the genetic counselor about our egg donor E's karyotype results:

"An inversion on chromosome 9 is generally thought to be a common and benign polymorphism, but we do not allow donors to donate if they have any type of chromosomal variant, as it could disrupt meiosis and lead to aneuploidy."

Basically one piece of our donor's chromsome 9 is reversed end to end.

It looks something like this:

While we were waiting on word from the genetic counselor, we did our own research (of course, you knew we would).

And we found that while this inversion (not sure if it is a paracentric or pericentric, or whether it matters) is considered a "minor" chromosomal rearrangement and doesn't correlate with abnormal phenotypes, that research also suggests (depending on which type):

a higher risk of spontaneous abortion in approximately 30% of those affected (and we need that like we need a hole in the head, frankly)
potential abnormal ultrasonic findings on fetuses with this abnormality, including hydramnios, anhydramnios, hydroureter, hydronephrosis, encephalocele, and prune belly syndrome.
that it is a potential cause of psychiatric disorders
reports of links to congenital genital malformation, mild growth retardation, malformations of the skull and facial (craniofacial) region, undescended testis, skeletal malformations, mental retardation, hermaphroditism, and/or cardiac defects

Why in the world would we sign up for any of those things?

Because you know they would happen to us, they just would. We are not lucky when it comes to reproduction. I mean, seriously, we are not.

We feel bad for the donor, too. Because this can't be easy news to hear, even though everything will likely be fine for her (stress on "common" and "benign" variant). No matter what, not what she was expecting when she signed up to donate.

As for us, we are back to square one. But honestly, not even square one. We're back to zero.

I've never been thrilled about donor egg. I became thrilled about this donor. Will too. He says he feels that we just lost a member of our family, because we'd already ushered her in in our minds.

Better to know now than later, but still, what a sucker punch. We are out approximately $10,000. And we are out our dreams and hopes of what a baby with this donor would be like, and have also lost our hopes of moving forward in any timely manner. It took so much emotional work to feel OK about this, about her. And now, well...

I don't know that we want to do donor egg with another unknown donor.

Maybe we will just go straight to surrogacy.

Maybe we will consider donor egg with my sister.

Maybe we'll just put our embryos back inside of me at the time when we would have done the donor egg cycle.

To add insult to injury, I took my depot lupron shot on Sunday. The day before the rug got pulled out from under us. I absolutely hate depot lupron. I hate the effects on my body, my mind. I can't believe I got suckered by the universe into taking it - now for nothing.

I feel like we are so very unlucky.

I feel like giving up.

Mo

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I think I hear the other shoe dropping

noreply@blogger.com (Mo and Will) — Mon, 31 Oct 2011 21:35:00 +0000

So the donor's karyotype is normal, except that it's not.

46 xx normal female

but then at the bottom of the karyotype report it says: "A paracentric inversion of the heterochromatic region of one chromosome 9 homologue was observed in each cell examined. This is a heritable variant seen in the general population and is of no known clinical significance."

Anyone able to translate this? (I have Will researching right now as I'm about to go into a patient session.)

Apparently when the genetic counselor heard this new detail on the karyotype, she said the donor was out. Game over.

Until she heard from the donor nurse coordinator that it was our donor.

She knows us. She knows what we've been through. She knows how painstakingly we chose this donor. She told the donor nurse coordinator she will speak to the head of the genetic counseling department there for a final verdict.

So we are waiting on their call.

I want to cry.

Mo

***Update*** The donor nurse coordinator called. There will be no news tonight as the head genetic counselor has not yet been reached. We will hear the final verdict sometime tomorrow. In the meantime, we have done some research of our own on the significance of this finding and things don't look good.

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Oh no

noreply@blogger.com (Mo and Will) — Mon, 31 Oct 2011 20:07:00 +0000

I just received a voice message that there has been "a further development" with our egg donor's karyotype.

A further development?! WTF?

Currently on hold with the Denver clinic to find out what in the world this means.

Filled with dread.

Feeling like we just can't catch a break over here.

Mo

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