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

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.

Mo

Meeting with the Colorado wizard

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

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

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

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

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

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

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

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

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

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

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

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

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

Mo

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

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.

Mo

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

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

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...

Mo