Life and Love in the Petri Dish

Sticking it to infertiles with stick family stickers

moandwill@gmail.com (Mo and Will) — Thu, 12 Nov 2009 02:00:00 +0000

I'm going to admit to a pet peeve of mine - Stick Figure Family Car Window Stickers.

Do you know the stickers I mean? The ones people plaster on their car rear windows for all the world to see? (International bloggers, is this a solely American phenomenon?)

Since I live in Manhattan and fewer people drive cars here, I have been somewhat more insulated from this annoying fad than I would be if I lived in the suburbs, but it's something that bothers me all the same.

What is the purpose of these decals? They strike me as slightly self-aggrandizing, not to mention potentially unsafe. (Broadcasting your children's names on your car - brilliant idea!)

And perhaps needless to say, but there seem to be no family stickers for those without children. Oh wait, since we're childless, maybe we don't even qualify as a family...er...sorry, I forgot...no family here - just Mo and Will. Nothing to see here, folks, just keep on moving.

So maybe these stickers are a somewhat dim-witted idea that amounts to shameless bragging, but so what? Usually I don't get riled up about other people's business. I'm generally a live-and-let-live sort of gal.

So I had to ask myself, Why do these stickers irk me so?

Honestly, it's because they seem to be yet another unintended sucker punch from the fertile world. Another proclamation of fertile people's normality, their damn irritating fecundity. And another reminder of my defectiveness, my barreness, my pronounced child-killing abilities.

I realize my skin is thin on this. I know it is not the world's fault that it seems most everyone else can have sex and get (and stay) knocked up, whereas we've spent an obscene amount of money and endured a ridiculous number of procedures to get pregnant, and be pregnant, and then to get unpregnant again with nothing to show for it but a depleted bank account, a larger dress size, two laparoscopy scars, and an increasingly caustic sense of humor.

I know it's not the fertile world's fault. Hey, maybe if I could successfully reproduce I'd want to brag about it on the back end of my newly purchased minivan too (bought to shuttle my large family around in, to our many happy family events).

What bothers me probably most is that it is socially acceptable to put up self-congratulatory stickers of your family on your rear window, but it is not acceptable for us infertiles to discuss our reproductive struggles - and it is downright taboo to even mention pregnancy loss.

I'm tired of it all, I tell you. So today, I decided to make my own stick family sticker. Unfortunately, I don't have a car to put it on, and probably (but I'm not promising anything), I wouldn't be outrageous enough to stick it on my car even if I did have one. Because that would just make people uncomfortable and that's not really my aim.

But a little part of me thinks it would be awesome to get the conversation started, to not have so much of all our suffering be silent, not to mention how cool it would be to pull up behind someone else's car and see that she too struggles with infertility and loss - for a moment to cut through the isolation of it all.

So herewith I present Mo and Will's New Stick Figure Family Car Window Sticker, coming to you courtesy of this website:

Me, my husband, five miscarried babies, and our dog. What do you think? Isn't my family cute?

If I did stick this decal on my car, here's what I would secretly want to say:

Fertile world, here's my family. It's not the way I hoped it would be but this is how it is, so far, at least. Deal with it, OK? I have to deal with you - and the reminders of our heartbreak - every day.

Grumble grumble, grouse, grumble.

The Colorado genetic counselor rocks

moandwill@gmail.com (Mo and Will) — Wed, 11 Nov 2009 13:38:00 +0000

Thanks for all of your blogoversary wishes. We are ready to look forward to the coming year - and hope that there are fewer disappointments and more successes - please! Loved your comments reminding us to focus on what's important - our love for each other, and to be mindful of the accomplishments the last year has contained. We're with you guys - may this be the last year that this is an infertility blog!

So, finally, to fill you all in on the rest of the Colorado visit...

Our last meeting of the day was with Danielle, the genetics counselor. I'll be honest - I really didn't want to go to this. I mean, I spent an hour and a half with an M.D. geneticist in New York just a couple of months ago. What could this counselor possibly add? That said, once we met Danielle, I liked her immediately. And what she had to say perked up my ears rather quickly as well. We were drawn to Colorado because of their microarray technology. She said, however, that after reviewing our files, she'd spent the day meeting with the scientific director and making calls on our behalf because she felt that microarray wouldn't be enough for us, given my cancer treatment history and the fact that our losses have included both trisomies and polyploidies (overachievers, us!).

Basically, she said that microarray can only detect trisomies. Apparently, the way the technology works, microarray looks for alterations in the patterns of chromosomes - so one more or one less of a particular chromosome, a heterogenous problem. Microarray does not pick up polyploidy - because in this situation, there is an extra set (or sets) of every chromosome. And so the test reads it as normal, since it's a homologous defect across the entire set.

Who knew?

But surely, we're not the first couple to ever cross the Colorado Clinic's threshhold who's had a polyploidy plus a trisomy? I asked this, and Danielle assured me that although it is unusual, we are not.

But she said in our case (lucky us!), they were worried the polyploidy problem (usually a 1 in 1,000 occurrence) might have a tendency to repeat.

Hearing this, part of me was like YES! Finally, someone agrees with us that there is something unusual here - that these silly population statistics may not apply to us! This part of the information was super validating and welcomed. At the same time, I also had a Oh no, we are so f*cked up sort of reaction.

Bottom line, according to Danielle, we will need to do both microarray and FISH screening (the type of screening they use in PGD) to look for both trisomies and polyploidies. Because they do not want me to transfer embryos back thinking they are normal and then find out that they aren't normal after all. So they want to do a single biopsy of each blast (should we be so lucky to get blasts), split the tissue from each blast and send half of it for FISH and half of it for microarray.

Sounds good, right? The only problem is that each of these tests costs approximately $5,000. So it would add an additional $10k on top of the usual ridiculous IVF fees.

Ha. Ha. Ha.

Before we both fainted, Danielle quickly said that the Colorado clinic would never expect us to carry all of this cost and that they were already negotiating with the labs involved to waive fees so that we could have both tests run for no additional cost. In fact, she waived her $150 fee that day to get us started down the road of savings and said they were going to figure out how to shave $5,000 out of things somewhere so we don't foot the bill.

This was our final appointment of the day and we after we finished speaking with Danielle, we got into our rental car and drove directly to the airport to catch our flight home. What a way to finish out the day.

Our final impression was Wow. They are really thorough and have thought about our specific situation and what would be best for us. They are really looking out for us. Needless to say, we were impressed.

We'll keep you posted on what they're able to work out for us.

Five hundred twenty five thousand six hundred minutes: Happy 1-Year Blogoversary

moandwill@gmail.com (Mo and Will) — Mon, 09 Nov 2009 14:42:00 +0000

Today marks one year since we began this blog, although it feels honestly like years have passed since we began writing. So much has happened on our trying to conceive (and more importantly, stay conceived) journey, as well as on professional and personal fronts.

We originally conceptualized this blog as a quasi-dialogue between Will and me, where we would each post our takes on various situations and discuss the differences and the similarities in our takes on our situations - hence the title of the first post: If Men are From Mars and Women are from Venus, Maybe Babies are from Pluto?

I miss those days. Will wrote a lot at the beginning, but over the last several months, his posts have trickled off, in part because he never felt like his posts got much comment. (I disagree, but hey, I'm from Venus, so what do I know?) But despite his lack of active participation of late, he and I discuss the blog and he reads all of the posts, contributes to the Hallmark Rejects, and reads every single one of your comments. And more important than any of that, he's still my active partner in all of this infertility madness, going to see the miscarriage wizard and the Colorado wizard, attending ultrasounds and blood draws. He's a champ, really. Everything I could hope for in a life partner.

A year ago, we were about to embark on IVF number three, which seemed like a lot of IVFs to go through at the time, but now looking back seems like really not so many. We were nervous, but hopeful. Although we didn't say it, we were fairly sure that we would succeed and thought we'd just drawn the short end of the statistical stick a few times. Because although everything had turned out so badly with two IVF cycles and three losses in a year, we made bunches of good-looking embryos. We'd have to get our day in the sun, right?

Right?

Of course the way things look now, we are not so sure. Amazing how many things can change in a year, most of all your perspective. It may only have been 365 days, but it's been a much longer journey psychologically.

But here we are, one year later. Still here. Still standing. Still loving each other fiercely.

In honor of today's blogoversary, we've compiled a partial catalog of our past year. Thanks for being there to share these moments with us.

With a nod to DAVs, we thought of the song Seasons of Love from Rent which asks, "In five hundred twenty five thousand six hundred minutes, how do you measure a year in the life?"

We measured this year in

One hundred ninety four blog posts
One decade since cancer
Three IVF cycles
Eleven transferred embryos
Two much desired pregnancies
One doctoral degree
One transcontinental adventure
One heartbeat
Two miscarriages
Two broken hearts
One amazing god-daughter
One post-doctoral grant
One beautiful puppy
Ninety thousand six hundred and eighteen unique visitors (wow)
Countless comments from all of you

So Happy Birthday, blog.

And thank you to all of you. Truly. You've given us so much strength and hope throughout the last year. Your presence - and your comments and thoughts - keep this blog alive.

Meeting with the Colorado wizard

moandwill@gmail.com (Mo and Will) — Sat, 07 Nov 2009 04:59:00 +0000

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

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

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

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

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

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

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

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

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

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

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

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

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

Home again, home again: Back from the one-day work up

moandwill@gmail.com (Mo and Will) — Wed, 04 Nov 2009 16:18:00 +0000

We've returned from the Rocky Mountain clinic, and I have much to say about our journey, which will likely trickle out over the course of a few posts.

While out west, we saw a brewery called "Rock Bottom" and I thought, that's fitting. That's why we're here - we've hit rock bottom in this Trying To Conceive business.

We're so close to our absolute nadir of hope that we flew halfway across the country for potentially our last shot at having a genetically related child. We have long heard of this fabled Colorado clinic and had done a phone consult with their director way back in Feb. 2009. At that point, he had been quite sobering in his opinion, but had recommended a comprehensive chromosomal screening called microarray as our best option if we wanted to try one more time with my eggs.

To recap everything between the phone consult and now, we've done two more IVF cycles at our NYC clinic, planned to go out to Colorado twice, but gotten pregnant both times, and subsequently miscarried both pregnancies. So it feels a bit crazy but really kind of cool to actually finally make it to the one-day work up. We brought all of our information with us, curious to see what this clinic and specifically their head doctor, Dr. Schl. would have to say.

What a whirlwind trip - there was really not a moment of downtime. Will and I were both pleasantly impressed with the Colorado clinic's professionalism and efficiency. And honestly, at this point, I'm a bit cynical and am almost looking for something to criticize. So it was quite something that consistently we found this clinic to be really on their game.

For example, throughout the day of appointments, everyone we encountered had read my chart and knew our history. This clinic definitely gives an impression of knowing what they are doing. And when we met with Dr. Schl., he was perfectly pleasant and very informed and articulate, despite his reputation for not having the best bedside manner. He didn't sugarcoat anything, not a morsel of it. But he wasn't overly harsh in the way he delivered what seemed to be his honest opinion either.

Below is our schedule for the day. It was pretty back-to-back and well-organized. Lots of information presented and many tests and some procedures done. I expected this to all be (yawn) redundant (and I therefore predicted I would be annoyed) and some of the things were redundant of course, but there were a number of interesting things we discovered (in bold below):

9:00 - 9: 30: (but it ran longer): met with Dr. Schl (will post details in a separate post. Very interesting chat).

9:30-10:00: met with laboratory people and signed many consents.

10:30-11:00: very detailed ultrasound for me, semen analysis for Will. Turns out I have three fibroids that won't affect anything. According to some kind of doppler scan, I also have blood flow resistance to my uterus - for which they recommended 8 sessions of electro-acupuncture before embryo transfer. Who knew?

11:00-12:00: met with IVF nurse for full hour of education on how things work at this clinic in terms of contact with staff, cycling, testing, etc. Cool to see how they do things as compared to my clinic (more on this later). Geesh - this clinic really wants us to be informed - they presented us with a full binder of materials and literature - this is more info than my clinic has ever given me across two years of treatments.

12:00-1:00: lunch (was supposed to be a half hour but they had mercy on us).

1:00-2:00: met with IVF nurse for another full hour for education on genetic testing required for heritable diseases, required communicable disease testing, medication administration, etc. Good Lord, these people are thorough in their written materials and presentations (hmmm...does someone on staff have obsessive compulsive personality disorder, perhaps? Across the board, the attention to detail was...actually a little scary...but also kind of comforting.)

2:00-2:30: lots of blood work, plus was offered and accepted the chance to get the H1N1 shot - cool! - it's not available at my hospital yet. Don't have it in front of me so can't remember everything that was ordered in terms of bloodwork, but at least two things were new: AMH testing and CMV antibody testing. Will be curious to see results.

2:30-3:00: office hysteroscopy with Dr. Schl. Hurt less than I thought it would. (Given that this cost $645, I was slightly annoyed that as expected, everything in ye ole' uterine cavity is normal). Structural problems are not our problem.

3:00-3:45: met with genetic counselor (thought this meeting would be totally redundant and annoying, but it turned out to be quite useful and surprising...so much so that I will tell you about it in a separate post).

We arrived home very late last night, picked up our puppy, and dropped like dead people into bed. Right now Will and I are trying to dig out from all that went on in our work while we were away and emotionally process everything we heard. As well as attend to Ms. Moxie who had to go to (gasp! she's just a puppy!) a pet sitter while we were away.

Everything we saw and learned gave us a lot to think about. I promise to post again soon when I can. Bottom line, at the moment, we are anticipating we will likely give this IVF with microarray thing a try. It may or may not help us, but at least we'll know. And maybe then we can move forward. Or, even better, although probably unlikely, maybe IVF with microarray will actually work and we'll end up with a baby. Wouldn't that be something.

Hallmark reject #6: the clothing line (male factor)

moandwill@gmail.com (Mo and Will) — Tue, 03 Nov 2009 12:00:00 +0000

We're in Denver at the moment, but we thought we'd post this week's Hallmark reject in our absence.

Because we certainly wouldn't want to leave the guys out in the cold without infertility apparel!

So, at Alexicographer's request, here is the debut of the male-factor line.

Forget the health care profession - I think we may have found our true calling as snarky copy writers.

Regroup with the miscarriage wizard

moandwill@gmail.com (Mo and Will) — Thu, 29 Oct 2009 18:59:00 +0000

Today was the follow-up appointment with the reproductive immunologist, a.k.a., the miscarriage wizard. I stand by my first impressions from the last appointment - this guy is a nutter. Will has taken to calling him the "mad scientist." Throughout the meeting with the doctor, it was hard to get a word in edgewise, he couldn't seem to remember who I was and had to review my chart in front of me to remind himself of my history, he kept mixing up Will's and my professions, etc. Sigh. He may be brilliant, but he does a poor job of making good impressions. Both of us almost felt sorry for him.

As for the test results - there were some abnormalities. Not surprising, I suppose. If you take enough tests, you're bound to find something, aren't you? The wizard was not good at all at explaining the significance of them in any kind of convincing way so Will and I will be doing the research to educate ourselves. But basically, it turns out that the following immunological tests are "not normal":

antiovarian antibodies

TH1:TH2 cytokine ratio

natural killer cell assay

leukocyte antibodies

DQ Alpha antigen

The gist of it is that these immunological issues can supposedly impact implantation negatively and also lead to clotting issues (although all my thrombophilia indicators are normal, go figure). So the wizard recommended baby aspirin and lovenox + either prednisone, intralipids, Humira, or IVIG. He was really pushing IVIG specifically, but as I've said, he wasn't exactly instilling confidence in Will or me. (After the appointment, Will turned to me and said rhetorically, "Would you ever let him touch your baby if you had one?" Ah, no.) Honestly, I'm not sure if I'm willing to do IVIG. Apparently, you need 2-3 treatments (per pregnancy) at $3,700 a treatment - the first one of which is before you know if you're pregnant or not. And the treatment is collected blood products, which is also not thrilling. Combine all that with the fact that this is a very controversial treatment, and, well, I'm just not sure I'm signing up for it.

Needless to say, we'll be reviewing the literature.

Hmmm....so remember how I was wondering if going to this doctor might be opening a can of worms? Well, consider it opened. We'll see where we go from here.

To keep things stimulating, it looks like we ARE headed to Denver next week for the one-day testing on Tuesday. Flight booked, hotel reserved, rental car rented. We'll see what they have to add to the mix. This should be interesting...

Limbo

moandwill@gmail.com (Mo and Will) — Tue, 27 Oct 2009 14:37:00 +0000

It's strange, but since our latest loss at the beginning of August, I have felt that I don't know which way to turn.

None of the options feel good or right to me. And therefore, for once, we haven't leapt right back into another IVF cycle.

I feel, in fact, like we've just been standing still for the past almost three months.

But I guess that isn't true. In that time, we've met with the geneticist and gotten the endometrial function testing, and gone to see the reproductive immunologist (follow up appointment is in two days, finally), and we are scheduled to go to Denver for the one-day work-up next Tuesday. I hesitate to type that last item because I've scheduled that work up several times before and we've never actually kept the appointment. But I think this time we are actually going to go.

Reading all that, it seems that we've actually been pretty busy with all these testings and consultations. Which makes me wonder, why do I feel so stagnant?

I think it's because when I look at all of the options, I am just stymied. We're thinking we may do an IVF cycle in Denver. But I feel pretty much completely hopeless about it. We're considering doing some high dose IUIs here in New York, but I feel pretty lackluster about that too. We're thinking of attending an adoption conference in November, but I'm not that jazzed about that. And we've been entertaining some donor options, but again, bleh.

It feels so strange to not feel driven forward, as I have for the past two years, in our quest to have a baby. We still want a baby desperately, don't get me wrong, but the urgency has changed. Which I think is only because I'm really beginning to give up on the idea of us succeeding on our own. And yet I continue to be underwhelmed about the other options: adoption or donor. So I'm in this in-between place.

Neither here nor there.

Basically, in limbo.

For three months we've been in this information gathering place with this testing, these specialists. I'm beginning to think that at the end of it, the path won't be any clearer than it was before.

Except perhaps maybe for one thing.

Perhaps I'm moving closer to the beginning of acceptance.

Perhaps I'm starting to let the reality sink in: that there will be no certainty; there will be no definitive answers.

Hmmm.

Hallmark reject #5: the clothing line

moandwill@gmail.com (Mo and Will) — Mon, 26 Oct 2009 11:00:00 +0000

Branching out into miscarriage announcement apparel - transformed from pregnancy announcement apparel. (Who even knew there was such a thing?!)

What do you think, coming soon to an RE's office near you?

Found in the medical school library: Labor pain scale

moandwill@gmail.com (Mo and Will) — Thu, 22 Oct 2009 11:10:00 +0000

I spent part of this fall feverishly reading through the obstetrics section of the library at our local medical school to try to make some sense of our multiple IVF failures and five consecutive miscarriages. I didn't come up with great answers for our situation, but I did come across this little pain scale. As soon as I saw it, I knew that I just had to share it with you.

Because this, ladies and gentlemen, is a visual analog of how much it freakin' hurts to have a baby, found in an obstetrics textbook (btw, primipara means first baby and multipara means you've already had a child):

Now, as you know, Will and I would do practically anything, including amputate digits, if we could successfully conceive a child who could live.

But I have to say, it amused me to no end (and ok, I'll be honest, it slightly terrified me, too) to see that should we actually ever succeed at this venture, it may come close to feeling like I'm amputating a digit to have our little loved one join us in the world. Thankfully, it looks to hurt a little less if we get some training ahead of time (not surprisingly, it looks like fear increases pain). And of course, this is without an epidural...

From where I'm sitting now, terrible labor pain seems like a pretty damn good problem to have, ya know? But yowza!

Those of you who have been there, done that, does this pain scale reflect your experience?

It was worth it, right?

RIGHT?!

(hello? anyone?)

Mo

Even more Hallmark rejects

moandwill@gmail.com (Mo and Will) — Mon, 19 Oct 2009 11:00:00 +0000

What to send to the friend who has a genetically abnormal miscarriage?

I know, you're stumped, right?

Herewith, the debut of the first and so-far only e-card to acknowledge the chromosomally abnormal miscarriage. Sure to cause dismay to all who receive it.

But hey, at least it is some kind of acknowledgment.

What do you think: send on to Hallmark or keep it under wraps?

Puppy at 11 weeks

moandwill@gmail.com (Mo and Will) — Fri, 16 Oct 2009 13:53:00 +0000

We are convinced she is the most adorable puppy ever. And as you will see, she is growing by leaps and bounds!

With her stuffed red lizard:

Lying on Mo's tummy:

And sleeping with her little lamb:

Ah! Heaven!

A day to remember

moandwill@gmail.com (Mo and Will) — Thu, 15 Oct 2009 18:00:00 +0000

The wrong post went up earlier today. It will be re-posted next week at a more appropriate time. Sorry about that. For today, no jokes. Just taking this day to remember the losses so many of us have endured.

As you've no doubt noticed, Will and I have been in a place of late where we have been choosing to laugh instead of cry. We have been making many wry jokes around the house this past month or so and we've introduced the Hallmark rejects cards here on the blog, which we've also found quite entertaining.

But beneath our off-color humor is a deep sadness at the loss of our five pregnancies. A sadness that is with us also, much of the time.

Yesterday I was speaking with my RE about where we might go from here and as we discussed the possibility of PGD, I told him that if the point of a PGD cycle is just to keep me from miscarrying again, then I don't need PGD. That as hard as things have been, I am grateful to have been able to be pregnant each and every time.

Obviously our goal is to have a baby who lives. That is the hope. But maybe Will and I don't get to have that. Maybe all we will ever get to experience is the joy of glimpsing our children a few times on ultrasound, their hearts beating, their limbs moving. If that is all we get, I will accept that. I would rather have the chance to experience our children, even in this small way, and then suffer losing them, than never have them at all. Even if we never get to have a live baby.

So I told the RE that. And he got a little choked up and said that that must be a really hard thing to say. And I guess it is, but it's where we are at.

These pregnancies, these miscarriages, are our children. And I am glad we were able to have them in our lives, even much too briefly.

Thinking of each and every one of you who has lost a pregnancy or infant. Today. And every day. Thoughts especially go out to my Hodgkin's buddy m., Susan, Niki, Echloe, Lisa, MeKate, Alexis, Natalie, NoodleGirl, Megan, Michele, WiseGuy, Michelle, Luna, and Infertile in the City.

Your endometrium is like a fruit cake...a slightly abnormal fruit cake

moandwill@gmail.com (Mo and Will) — Wed, 14 Oct 2009 17:55:00 +0000

I finally connected with my RE to get the results of the endometrial function test.

Apparently, the biopsy results showed mild glandular abnormalities; i.e., the "fruit cake" of my endometrium is not looking quite as it should. Specifically, there was one marker present (cyclin E) that is only supposed to appear during the early secretory phases of the menstrual cycle (days 5-19), but in my endometrium, was present much later, during the time when implantation would occur. Which can negatively impact an embryo taking root.

My RE said the level of the abnormality was "mild" and so he says he is inclined to take the news "with a grain of salt." (Grain of salt on the fruit cake of my endometrium. Me thinks this is too many metaphors!) The cyclin E abnormality could be due to morbid obesity (except that I'm not overweight), or infection (not the case), or endometriosis (hey, I have that!), or stress (that too!). Since I've already had a laparoscopy this year to remove endometriosis, there is really not much else to do on that front. And stress, well...I'll do what I can, but it's ubiquitous, you know?

Bottom line, it's unclear what to make of the results, sigh. But the RE doesn't think we should give up on the old uterus just yet - or at least not because of these results. Again, I'm left wondering a bit why we did this test. But I guess the answer to that is to make sure there were no glaring abnormalites. And there weren't. My fruit cake was only subtly off, not grossly malformed.

So that's, I suppose, good news?

The Yale researcher who does this test has a twitter feed called placenta talk. The intro page has quite the graphics, if you want to click over. Who knew the placenta was, um, actually a little gross?

The immunology results we had drawn from the wizard are still outstanding, so we'll see what further murkiness that adds to the picture in a few weeks.

Meanwhile, Will and I will continue to mull and muse and sit in the trenches processing things. Which these days takes place on a mostly nonverbal level. Which is OK by me. For once, I'm out of logic, out of scientific notions, out of problem-solving ideas. Just plumb run dry of everything. So we're just going to sit here where we are for a bit, until we feel like picking ourselves up, dusting ourselves off, and trying something* again.

Mo

*"something" potentially being high dose IUI, IVF with CGH/microarray, donor egg, or adoption.

Another Hallmark reject*

moandwill@gmail.com (Mo and Will) — Mon, 12 Oct 2009 11:01:00 +0000

*Inspired by actual family member comment after miscarriage #1.

Meeting the miscarriage wizard

moandwill@gmail.com (Mo and Will) — Fri, 09 Oct 2009 03:00:00 +0000

So we met Monday with the NYC reproductive immunologist, aka our miscarriage wizard du jour. And the meeting was, I thought, a little wacky, but I suppose not all-together bad.

The doctor seemed like a smart enough guy, from Australia I think (perhaps England, I always get that wrong). Very nice, VERY chatty. A little bit of overshare with the details on other patients, for example telling us more than I cared to know about someone else's miscarriage that morning and how it had set him behind on his schedule. "You know how that goes," he said knowingly, and um, yup, we do. As a psychologist, I also know how confidentiality goes. So I wanted to say, Zip it!

It felt throughout like the doctor was trying to relate to us simultaneously as peers and as patients, which was a little awkward. And hey, I just want to be your patient, you know?

He also had a tendency to assume major facts and not let us speak. At one point, early on, he said, "I bet I could tell you your whole history" and then proceeded to make several good but incorrect guesses. So he's barreling ahead with his fictional account and I'm saying, "Nope. Actually no. That's not what happened. No Clomid. Nope. No IUI, we went straight to IVF. Um, no, sorry, all the pregnancies weren't chemical, we've had a heartbeat two times" etc., etc. I wanted to say, just listen a little, won't you?

We hit a low point in the consult when he said to me, trying to cheer me up, "You know, you've been pregnant so many times, if you don't want to have children, I think you'll have to go on birth control! Don't you agree?"

And I looked him in the eye and said, "I agree that I'm likely to get pregnant again, but I don't know that I'm likely to have a living child."

And then he said, "Oh, you're right. Maybe not, but pregnancy, definitely."

Um. Yeah.

Throughout, the doctor drew many pictures and made reference to other alternative REs and immunologists (Sher, Sami David, Beer) and overall just seemed to really enjoy the process of talking to us. Or well, at least of talking.

I just wasn't that sold on the whole thing. Funny thing is, my husband Will told me afterward that he found the doctor rather endearing. Will seemed drawn into the doctor's zaniness, but meanwhile, I was moving from skepticism to downright irritation.

I noticed my increasing wariness and had to remind myself, that's not really why we were there. We weren't looking for a good primary care clinician or someone to build a strong relationship with.

We were there because this was a doctor who was willing to do testing no one else will do and so of course he's going to be a little iconoclastic. A tad eccentric. A little fringe, perhaps. That's sort of what we signed on for, isn't it? I told myself that perhaps I had gotten too used to the straight-up academic professional types. So what if the appointment seemed somewhat haphazard, slightly sloppy, a little bit like a clinical free-for-all?

So anyway, that's kind of the what's what about the appointment itself.

Here is a list of what the doctor ended up ordering:

Serum IgA
Serum Creatinine
Protein Z
PT/aPTT/Platelets
Fasting Insulin and Glucose
DHEAS
Mycoplasma/Ureaplasma
Antiphospholipid Antibodies
Antinuclear Antibodies
Anti-DNA/Histone Antibodies
Anti-thyroid Antibodies
Reproductive Immunophenotype
Lupus Anticoagulant
Anti-Sperm Antibodies
Antiovarian Antibodies
HLA-DQ Alpha Antigen
Leukocytes
TH1:TH2 Cytokine Ratio
NK Killing Assay

He also wants us to send the tissue slides from our second miscarriage to a placental pathologist for review. This is the miscarriage in which gross pathology was done but no cytogenetics were run (because the lab mistakenly discarded the sample). He said we may be able to determine if it was likely chromosomal this way.

And he had some blood and bacterial culture tests for Will as well, which I always like, because hey, isn't Will half of the equation here?!

As we were walking out the door, the doctor said, "Don't worry! Even if everything comes back normal, I'll find something to give you anyway!"

I'm sure that was supposed to be reassuring, but given the amount of money involved (not to mention blood...and time...and hope), somehow it wasn't. I mean, if you're going to give something to me anyway, couldn't we just skip all this expensive testing?

So we shall see. Will is much more open to this immunological stuff and to this doctor than I am, which is an amusing turn of events, given his initial hesitance. Time will tell. Results should be back in about three weeks. In the meantime, Will and I will continue to enjoy our "normal" lives, lavishing love and affection on our adorable Moxie.

Mo

More Hallmark rejects

moandwill@gmail.com (Mo and Will) — Mon, 05 Oct 2009 11:00:00 +0000

Decision made

moandwill@gmail.com (Mo and Will) — Sat, 03 Oct 2009 22:55:00 +0000

Thanks for all of your thoughts and opinions and reasonings on whether to see the reproductive immunologist or not. Very, very helpful.

After much deliberation, Will and I decided we will see him on Monday. We're not really expecting a whole lot, except a $1,000 bill for the consultation, but we figure we'll give it a try and see what he has to say anyway. If we decide to do the testing, that's another $700-$2,000 and then the follow-up appointment is another $500. Ugh. We hope for all of that, he has something useful to add to the mix, and we've decided to take the chance that maybe he will.

Talking about this, we also came to the realization that when we think of reproductive wizards, the person who repeatedly springs to mind is the clinic director in Colorado. So we are going to try to gather our emotional and financial resources and make a trip out there this fall for the one-day work up. That's the plan at least. In the past, when we have planned this (twice), we have gotten pregnant. Which would also be a very fine outcome.

So there you have it. Update to come, both on the immunologist visit and the pending results from the endometrial function test.

But first, check back Monday for the next installation of Hallmark rejects...and let us know if we're on the right track.

Opening a can of worms? Upcoming miscarriage doc appointment

moandwill@gmail.com (Mo and Will) — Thu, 01 Oct 2009 20:30:00 +0000

We have an appointment with a reproductive immunologist in New York City on Monday. Perhaps he is the miscarriage wizard we have been seeking.

Or perhaps not.

I made this appointment back in August, right after our fifth miscarriage (yes, this was the first available). I then promptly forgot about it. And now it is here. And I'm not sure what to do.

I have been doing a lot of research on immune issues and pregnancy and am finding the scientific evidence is as clear as mud. It's very controversial, so much so that many of these immunological tests are not run in academic centers (we've had the ones that are: APA, thrombophilia stuff, thyroid issues. all normal).

Sigh.

It is hard to tell if seeing this doctor will be part of looking under every stone and possibly finding a solution to at least part of our problem. He won't be able to fix our chromosome issues, but if there's also an implantation issue, then maybe, just maybe he could do something to help.

On the other hand, maybe his controversial treatments could actually make things worse. (Worse! Ha! Hard to believe, but I'm sure it's possible.) Just to recap, we know that three of our losses were due to wonky chromosomes but the other two...not so clear...and we also had three failed IVFs...some of them with crazy numbers of embryos transferred, which maybe didn't take because they were all abnormal, or maybe didn't take because we have some other implantation issue.

And of course there's the small issue that this guru guy doesn't take any insurance, so we'll be shelling out a decent amount of cash to see him and for the testing and then to see him again to hear his opinion on the testing.

My husband Will and I have been on a much needed puppy-induced hiatus from thinking and talking about infertility/pregnancy/etc. But if I'm not going to go to this appointment, I'll need to cancel it, probably by tomorrow. Will and I have gone back and forth on it and have struggled to come to a decision. One of Will's concerns is that seeing this physician will just open up a can of worms (as he likes to put it), where some vague problem will be identified (e.g., elevated natural killer cells or antisperm antibodies or DQ alpha whatever whatever that suggest using IVIG or intralipids). Things that we won't know exactly what to do with or their significance, since the research is scant, contradictory, and often poorly excuted. And that this might just leave us back where we are. Or at an even worse place then where we already are, filled with greater doubts and anxieties than we currently have, and still no clear path.

I hear that. I'm not interested in a can of worms or a wild goose chase, or a bunch of geese chasing worms, or, well, you know what I mean. But I am also a fairly die-hard information seeker (which I'm sure comes as no surprise to regular readers).

So, Blogworld, what do you think? Should we go ahead and go? Or not go? Please chime in. I'd like to hear all of your thoughts. I am especially interested to hear what you think if you come from a medical background or have any experience/knowledge of the more controversial immunological stuff.

Don't worry, we'll ultimately make our own decision, but let us know, what would you do? And why?

Introducing Hallmark rejects...by Mo and Will

moandwill@gmail.com (Mo and Will) — Wed, 30 Sep 2009 03:00:00 +0000

Inspired by the miscarriage e-card Mo found last week, we have decided to begin an occasional, off-color series of loss and infertility "cards," created by us. Who knew coming up with these could be so fun? Feel free to let us know if we take it too far.

Mo and Will

Meet the newest member of Mo and Will's family

moandwill@gmail.com (Mo and Will) — Mon, 28 Sep 2009 15:00:00 +0000

We got a puppy this weekend! She's a girl! She has white paws and a white belly and a little wrinkled body and the most adorable floppy ears!

We are thinking we will name her Moxie, which according to the Merriam-Webster Dictionary, means 1.) Energy, pep. 2.) Courage, determination. 3.) Know-how. Per Wikipedia: This neologism has taken on the meaning of "courage, daring, energy, vision" in American English. As in, This girl's got moxie!

We are very busy (and a little sleepless!) helping Moxie settle in to her new home. It is wonderful for us to have someone to love.

Welcome home, little one!

Sick sense of humor

moandwill@gmail.com (Mo and Will) — Sat, 26 Sep 2009 03:00:00 +0000

My husband Will and I are developing a twisted sense of humor. Maybe it's a way to cope with our five miscarriages, but over the past two years, our jokes have gotten increasingly dark. We laugh together quite a bit, but the jokes are getting to be a little off. I think it's actually a sign of progress that we can share a good chuckle, either making fun of our own horrid luck or using humor to express our exasperation with various family members (who always mean so well but sometimes say the gosh-darndest things.)

I've grown so comfortable with our increasingly weird shared humor that I've begun to lack good judgment about what others might find funny. You know, like normal people. I'm starting to notice that only those who are grappling with infertility seem to appreciate my IVF/miscarriage humor.

I had drinks earlier this week with a friend who after several canceled IVFs is about to move on to donor egg, and we had a grand ole' time, laughing our heads off about the ridiculously absurd moments with our feet in stirrups, the clueless things people say, our envy toward those with accidental pregnancies. The whole nine yards.

Then last night I had dinner with another friend, one who has known me for several years, and who knows my history of IVF and five pregnancy losses. And we had some real heart-to-heart moments, which was great.

And then I cracked a few really funny zingers about miscarriage and mangled chromosomes. We're talking practically stand-up material here.

Nothing. Not a single smile. Even though I know this friend shares my dry humor on other topics.

Hmm...perhaps she didn't get it?

I tried another one.

Nada.

She finally said, "Mo, I can't laugh with you about this. I just can't. What you say is really funny, but your situation is so awful that I just can't."

Oh. Right. Not funny. In fact, very, very sad.

Oops.

I acknowledged that I'd put her in an awkward position. Should she laugh? Not laugh? It must have felt very confusing. I promptly apologized.

And yet, I am still pulled to the dark side.

I just ran across this picture on a blog as an example of an e-card that never made it into print. And I howled with laughter:

I found it hilarious. Why? Because it touches on the fact that 1.) There is really no "good" side to loss and people's attempts to point out the silver lining are just doomed to piss you off and fail. And 2.) It highlights the point that there are no cards or other rituals to acknowledge pregnancy loss, just as there is no space to mourn miscarriage in this culture (unlike in say, Japan). And for that reason, our repeated losses are sometimes not acknowledged and have often created awkward silences in which both I and the other person feel badly.

So OK, OK! I get it. It is probably inappropriate to share this card with friends who haven't miscarried or struggled to conceive.

I will be a good friend and act with restraint.

Instead, I will share it with you.

Thanks for being there.

Fruit cake and Endometrial Function Testing

moandwill@gmail.com (Mo and Will) — Wed, 23 Sep 2009 11:00:00 +0000

So I went in to see my RE yesterday and had an endometrial biopsy done so the tissue could be sent to the researcher at Yale who pioneered the Endometrial Function Test (click the link to see him compare the endometrial lining to a fruit cake.) I've pictured my endometrial lining looking like a lot of things. But never quite like this:

The biopsy hurt, but not too badly (about the same as the coculture biopsy), and it was over in a minute or two.

The idea of this latest test is to get a sense of my lining and whether it is a receptive place for a little embryo to grow. So a snippet of my uterine lining is now winging its way to the aforementioned Yale researcher so he can look for things like the progesterone receptor, and mouse ascites Golgi mucin, and cyclin E (which shouldn't be there), and also to check and see if leukemia inhibitory factor, αvß3 integrin, HOXA-10, and p27 ARE there, because they should be. Got that? Me neither. Totally confused.

Apparently results will take a couple of weeks, so we'll see what said researcher thinks soon.

I have to say, I'm not holding my breath. Instead I'm moping around a little bit.

I do hope that something informative will come out of this, I really do. But at the same time, this is starting to feel a little bit like an exercise in the absurd. Know what I mean?

Call from the geneticist

moandwill@gmail.com (Mo and Will) — Tue, 22 Sep 2009 11:00:00 +0000

I finally spoke to the geneticist on the phone, and I want to cry.

She said the case conference was attended by staff from the cytogenetics lab, several geneticists, IVF folks, and at least ten genetics counselors.

You might think with all those smart people in one conference room, there would be some answers.

But if you're thinking that, you'd be wrong.

The consensus of all of this brain power? In terms of evidence based medicine's take on this, our risk of another aneuploidy is the same as the population risk for my age group (age 37), so something like a 1 in 150 or 1 in 200 chance. This is very hard to swallow and everyone seems to question whether this is or is not accurate, but it's as far as medical science can get us in terms of data-driven statistics at this time. Not very satisfying.

We have normal karyotypes, so that's not the problem. Any increased risk from radiation exposure secondary to all of the medical imaging I've had cannot be quantified (Direct quote: "No one knows"). Going back to the old tissue and making an attempt to determine the parental contribution of aneuploidy (i.e., was it the egg or the sperm in our three chromosomal losses) would apparently be getting pretty out there in terms of lab expertise, and although it can be done (we asked), it would be lengthy and expensive, and they really think the problem is with my eggs ("It would really be just an intellectual exercise").

Basically, the geneticist said that our problem could be just age-related and/or we could have a spindle problem (the spindle helps the chromosomes from the egg and the sperm line up so they touch in the right places), and/or a docking problem, and/or a problem with the gene that controls the spindle (and this gene has not been discovered yet - ha!), but these are all theoretical guesses and there is no way to test for them at this time.

"One of the big problems here," she said, "is the Why. And no one will be able to prove any of these hypotheses."

From her chart note: "There are several forces at play. One is the desire to understand the basis for their history of reproductive loss, which I think is reasonable. There does not really seem to be a satisfactory explanation" (emphasis mine).

And that's the rub. It feels like the bottom line is that we are not going to get an explanation. And we aren't going to know what our real risk is going forward.

Apparently, there were some at this conference who asked why we sought "more" genetic counseling. The geneticist defended us to them, saying that of course we need answers, that we are grieving and trying to make sense of why this keeps happening to us. And what is the harm in trying to get more information? Hear, Hear geneticist! You tell them!

The geneticist said she ran the information over and over in her mind during the weekend, trying to make sense of it. She said that she's only met us once, but our history is terrible, and that we need to think about how much more of this we can go through. She said she kept trying to think about us as human beings, not just an egg and a sperm. And that the financial, personal, and physical toll this must be taking on us is great. She said twice that she was amazed that we could tell our story without breaking down into crying, then said (both times) to herself, "You must cry at home. Your story is so sad." Believe me, geneticist, we have cried a lot.

She recommended that we begin moving toward a solution - pick a direction to head in and also pick a point at which we are going to stop. In the meantime, she suggested we begin pursuing other avenues to build a family concurrently, such as using a donor egg or adoption. She said we need a way out of this sooner rather than later and that we should really consider pursuing options simultaneously (e.g., try on own, but start looking for a donor or sign up to adopt) so that we can begin our family one way or another.

At the end of the call, she asked me to keep in touch and let her know what happens. "We are all really very interested," she said, "and we are hoping for a good outcome."

"Thank you," I said. "So are we," and hung up the phone with tears in my eyes.

I'm not sure why I am so sad, except that when she went over the options (1. try on your own; 2. do new IVF cycle with PGD; 3. do IUI), it sounded just like my own ruminative thoughts circling around and around with no answer in sight. And I think I'm now facing the fact that we're not likely to get any good answers. Ever.

More than that, it's hitting me like a ton of bricks that no one is going to give me permission to stop. I think that without realizing it, I've been unconsciously hoping that someone will be able to tell us that it just is not going to happen, so that I can stop with a clear conscience that I didn't give up too early, just when we were about to succeed. Somehow having to just make an arbitrary decision about when to stop feels like it makes all of this more my fault than it already feels. Without this "permission," I'm afraid I'll feel that not only are my eggs crap, but I'm a quitter too.

I really appreciated the time the geneticist took with us. And especially the fact that she tried to consider all of the issues comprehensively, including the reality that Will and I are two sentient beings, not just a clump of cells in a petri dish.

At the same time, I feel filled with longing and grief that we will probably never find an answer as to why we've had so many miscarriages, nor will we get a good read on what is the best direction to go in from here. Which feels like another loss. Nonsensical, I know, but there you have it.

Sisters

moandwill@gmail.com (Mo and Will) — Mon, 21 Sep 2009 14:28:00 +0000

My sister was here this weekend for a visit and it was lovely one-on-one time (Will is in Europe for work this week). She and I are very alike from our looks, to our mannerisms, to our sense of humor. We look so similar that people comment on it, immediately recognizing the relation. Even here in NYC, where no one comments on anything, two people this weekend said, "That must be your sister! She looks SO much like you!" And she does. And I am grateful for this connection. She is much younger than me (8 years), which makes this even more flattering.

Something about having my sister with me all weekend was so centering, so healing. We spent the weekend laughing, talking, sharing. Having her here was like a breath of fresh air after not breathing for far too long.

The geneticist and I are playing phone tag but hopefully will catch up later today, and tomorrow, I am scheduled to have part of my endometrium removed for the Endometrial Function Test. So the quest continues, but for once this weekend, it felt like I could maintain the right perspective, and not be consumed. I only hope I can hang onto this newfound sanity.

Thank goodness for little sisters. I am so glad she's in my life.