Tuesday, December 27, 2011

This year

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.


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Friday, December 23, 2011

(Yet another) talk with Dr. Schl.

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

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

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

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

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

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

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

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

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

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

Hoping so. These are pretty big decisions facing us.

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

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

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


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Monday, December 19, 2011

One foot in front of the other

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.


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Thursday, December 15, 2011

My sister's AMH results are back

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 Potentialpmol/Lng/mL 
Optimal Fertility28.6 - 48.54.0 - 6.8
Satisfactory Fertility15.7 - 28.62.2 - 4.0
Low Fertility2.2 - 15.70.3 - 2.2
Very Low / undetectable0.0 - 2.20.0 - 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

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?


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Wednesday, December 14, 2011

“Fall seven times, stand up eight”

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.


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Tuesday, December 13, 2011

To bris or not to bris, that was the question

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.


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Friday, December 9, 2011


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.


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.


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Wednesday, December 7, 2011

Not looking so good

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 


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