Answers That Come in the Form of Questions

When you think about getting answers to something, we almost always think in terms of facts. How tall am I? I’m 5’1.5” (that half inch is very important). When is my birthday? May 11. We ask a question, and there’s a definitive statement that answers the question. Certainly there are philosophical questions that can be debated, or for which we may never fully understand – what is the meaning of life? Why am I here? But for most questions, we believe there are answers to be found. Are we alone in the universe? We don’t know right now, but the odds of that are astronomically small given the size and complexity of our universe. Scientists struggle with questions every day. Indeed, many people form careers around asking questions and then searching for the answers, sometimes to succeed, sometimes to fail, sometimes to discover things they didn’t even know they were looking for. 

But when we ask questions of our medical professionals, we don’t generally expect to hear, “I don’t know,” in response to those questions. It’s not that the professional in question is incompetent, ignorant, or behind the times. It’s just that despite our amazing leaps in technology and medical science in the last century, there is simply so much that we don’t yet know about how bodies work. Medical researchers are some of those scientists that can spend entire careers seeking the answer to questions that have yet to be answered. 

Yesterday I had the difficult conversation with my reproductive endocrinologist about why all three of our IVF attempts failed. The short answer is, he doesn’t know. That’s horribly unsatisfying, and tends to leave me feeling very powerless, but it’s the only concrete answer that we have at this point. We just don’t know. 

Certainly there’s a hypothesis or two. The apparent problem is that my uterine lining was just never able to grow robust and rich enough to support implantation of the embryos. So that’s sort of an answer, but it’s also a question. Why? What’s wrong with my lining? We don’t know. Current practice has the doctor measuring lining thickness via ultrasound, examining blood flow on ultrasound, and measuring hormone levels in the bloodstream. They can, and we did, biopsy the lining to inspect it microscopically to look at the progesterone action and apparent health of that tissue. But what makes a lining sufficient or competent to support implantation? We don’t know. It’s being studied, there are some additional tests of questionable predictive value that can be performed, but still we don’t know.

So we have established that the proximate cause seems to be an insufficient quality of the uterine lining. But why is my body that way? I had some chronic inflammation of the lining that we addressed with multiple rounds of antibiotics late last summer and fall. Could that have existed for years and damaged it? We don’t know. Last summer during my hysteroscopy he found a minor sub-septate formation in the uterus which he repaired. Was that an indication of other poor uterine characteristics? We don’t know. My uterus has been described as somewhat small, is that a contributing factor? We don’t know. Did all of these factors combine and lead to failure? We don’t know. Have I, seemingly ironically, concerned myself with birth control over several decades and never really needed it? We don’t know.

We don’t know. Probably one of the most unsatisfying sentences in the English language.

My doctor seemed genuinely distraught that we were unsuccessful. I feel very fortunate to have been his patient. He took a very personalized and dedicated approach to my case. He did extra research, consulted with peers, and made every effort to bring about the best circumstances that he could – but we only had 5 embryos that were used in 3 transfers – and we simply “ran out.” His compassion and efforts went so far beyond what most reproductive clinics would have done. That we were unsuccessful would not prevent me in any way from recommending him to anyone that needs reproductive assistance. I truly believe he’s one of the best in the country (Dr. Tamer Yalcinkaya – Wake Forest Baptist Health Center for Reproductive Medicine).

So - what I do know, is that any further attempts to have children would be unaffordably expensive. We could continue to spend money on donor eggs, try to hyper-dose me with hormones to build my lining further with each subsequent cycle. I’m not sure my mental health would survive that – hormone levels that are 10 and 20 times higher than normal are not a pleasant experience. The Man has said it would probably drive him to drink, and that’s a big statement from him (he doesn’t, in deference to his epilepsy). We could spend even more money, obtain donor eggs and then use a gestational surrogate. We were actually introduced to one several years ago locally but a mutual professional acquaintance. Even going into a direct agreement with her (rather than going through a surrogate agency) would run the entire process upwards of $75,000. While taking a viable embryo and implanting it into a “proven uterus” such as hers would have a high probability of success, that’s money to which we just don’t have access. Going through an agency would probably add another $25,000 on top of that. Even if we could finance such an endeavor, I already owe a mortgage-worthy amount of money on my student loans from my MBA. The budget really couldn’t take it short of a Lotto win.

For many reasons adoption is off the table for us. We were foster parents on the road to adoption several years ago, I’ve mentioned that in the past, and it’s not a road we will travel again. Private adoption suffers the same barriers that surrogacy does in costs – though probably “only” half of what we’d spend on a surrogate. No – that door is firmly closed as well.

At the end of our conference yesterday we told him that we were done. It was a truth that I knew as soon as we got the final negative test result almost a month ago, but saying it out loud to him gave such a finality to the situation.

I did take in the remains of my unopened medicines and supplies. Needles, estrogen patches, progesterone oil. These items are expensive without good pharmacy and infertility insurance coverage. I asked him to please give them to a patient with crappy or no coverage, and he assured me they would be put to good use.

Ending our relationship with him, for the second time given we tried for over a year with other techniques back in 2007, is difficult. It is a chapter in our lives that has come to an end.

Now we must move forward, figuring out how our lives will play out without children. I told the Man that I’d probably drag him around the world more than we would have been able to, and he didn’t object too much, insisting only on having a decent net connection for at least some of the destinations. (Addict!)

My grief has been a rocky road. I’m back with the therapist I worked with after the nightmare, she’s pretty amazing, but it will take time. Time and some pharmaceuticals I wasn’t allowed while we were trying, so there’s at least that. I have no shame in utilizing such tools, particularly as some of my issues involve anxiety and tendencies that are likely to have been genetically passed on to me.

This time I’m not feeding my grief, I can’t in many ways, but the lack of desire to eat myself into a coma is a good thing. I seem to be channeling much of it into exercise, which is good. The hormones gave me some bloat, and the inactivity associated with some of the procedures I’ve been through led to about a 10 pound gain that I need to work off.

I still catch myself thinking about things related to parenting. I might roll my eyes at a choice of names I hear someone has made, I passed a church-based school the other day and thought about how much tuition might be. Little thoughts that I have to remind myself don’t apply to us anymore.
 

Mother’s Day is approaching, this year it’s on my birthday. I always hated “sharing” that day as a child, but this year I do feel rather cheated that we won’t be able to go out and celebrate my day without it being assumed we’re celebrating Mother’s Day. Honestly, our favorite restaurants would be packed and it wouldn’t be a great experience, but I do resent it, rationally or not. Our 6^th wedding anniversary is the following week, May 17, so I’ve suggested that we combine the celebration this year. Something quiet, inevitably. Dinner, a movie in bed, a snuggle if we don’t end up with all the cats piled on top of us.

I still can’t fully imagine what life will be like going forward. I’m thankful I’m not near as much of a zombie as I was during the nightmare, but one of the “mantras” that got me through then does apply still now. One breath, one minute, one hour, one day, one week at a time. Dealing with grief can be as much about survival as anything else. One moment is all I have to think about and get through. There will be another right after it, but I don’t have to think that far out if I can’t. Just now. Just today.

Sometimes answers come in the form of questions. I hope that someday the questions that would help someone like me will be answered. I will be grateful to the scientists who will make that possible.

The Things We Do

I sit here tired...no, not tired. Tired doesn't even begin to describe it. Exhausted. Bone-tired exhausted. I sleep every night. Sort of. I can get to sleep - a little quicker with a modest snifter of cognac, but I can't stay asleep. I wake up. Not just a slightly dreamy roll-over, full-on awake. Not just once, but three, four, five, six, sometimes even ten times a night. Every 45-60 minutes, I'm wide awake. I have to pee, my butt muscles are screaming at me to change positions, my shoulder is crying from the pressure of sleeping on it when it's still not healed. 

This morning we went to the reproductive endocrinologist again for another endometrial biopsy. This is the fourth? fifth? Honestly at this point I've lost count. I had one after the first failure, then I had several more trying to confirm that we'd gotten rid of a chronic inflammatory condition discovered after the first one, and then looking at whether the new drug protocol was working right in several trial cycles.

We did another two-embryo frozen embryo transfer IVF in early December and got the negative test on the 12th. We thought we'd cleared all the issues that we'd had going on during the fresh round and the cycles leading up to this.

The only thing I didn't know about the time, was that the doc wasn't entirely happy with what they saw on the last endometrial biopsy. Progesterone that occurs naturally or in our case, added through drugs, has several effects on the endometrial lining that make it an attractive place for an embryo to embed and begin growing. Apparently mine didn't look as happy and inviting as it should have last time - though all other signs were good, so he chose to proceed with the transfer.

I trust my doctor, so I don't know that I'd have made a different decision than that if I'd known, and honestly it's pointless to debate the idea.

We have one frozen embryo left. One last chance to get this done - or we're out. I don't have another $28-$30,000 to do another donor round short of winning the lottery, we've tapped all the resources we have access to at this point.

So this time around, we have to get things as perfect as we possibly can. So I've spent a full cycle on all the drugs, plus added Crinone - progesterone suppository gel, so nearly double the progesterone most IVF patients get during a cycle. Usually it's just intramuscular shots of progesterone oil, which is just a joy ride in and of itself. 1.5 inch 22 gauge needles in alternating butt cheeks at 4 or 5 in the morning, depending on when the Man has to be at work each day. I'm bruised and feel like I've been beaten repeatedly with a 2x4 across the ass every day.

I'm already on double the amount of trans-dermal estrogen with the patches (I wear two rather than one) - and instead of twice daily oral estradiol, I take it vaginally to help with absorption because apparently with my rearranged gut I wasn't getting enough of it through my digestive tract. Where a normal estrogen blood level for a pre-menopausal woman is 20-375, my levels have been running at 1400-2100 depending on how far we are into the cycle. The blood progesterone level isn't so much in question now although it's likely to be huge, but we're looking at the evidence in the lining from the biopsy today.

The sleep issues are, at least in good part, attributed to those massive hormone doses, and unfortunately sleeping pills are not an option during all of this. I spent quite a bit of time after the Nightmare sleeping with the assistance of Ambien, and dear God do I miss it. I'd trade 9 hours of my alleged sleep for 5 uninterrupted hours of Ambien-fueled sleep any day. 

So today I took another 3 inch needle internally for the local anesthetic before the biopsy - I'm thankful I don't have to see this part of it - knowing how long the ass needles are is bad enough. If the anesthetic really is reducing the pain, I'm not sure I'd want to know how much it really hurts, because honestly even with it, it hurts like a motherfucker. Hurt like a motherfucker squared is not really something I care to do.

So we wait now for the pathologist to take a look. The senior pathologist - since he and the doc reviewed my sample together last time. Doc is anticipating this will come in by Wednesday. Thankfully, I've been relieved of having to do the IM shots for the next few days, and I can give up the vaginal estradiol as well until the results come on. Should the sample be sufficient, we'll stop all the other drugs, let me have a period, and start it all up all over again. If the results are as desired, we'll do about 2 weeks on the two estrogens, another round of ultrasounds and blood work to check things out, and then both forms of progesterone again leading up to the final transfer.  If the results aren't as desired, he'll have to figure out another way to improve the progesterone action - which will mean another full test cycle.

In deference to my bruised ass, he did offer me a rest cycle, but there is something to be said for back to back medicated cycles that can encourage my body to get with the program and make a nice comfy nest for embryos. So despite the bruising and pain, I chose to have him go forward with whatever will become of the next cycle - another test or the real transfer.

I question my sanity in continuing this regularly - but I'd never stop questioning whether we could have success if we didn't see it all the way to the end.

I know success will ultimately lead to far more sleeplessness - pregnancy impacts it, having a newborn of course does, I just - I don't know. It's hard to consider it "worth it" right now - instead it's a barely tolerable side effect.

The things we do...

Faith, Denial, Hope or Despair

Otherwise known as someone has to be on the wrong end of a "great chance".

We got the call Friday afternoon. My quantitative HCG test was negative. More accurately, the value was less than 1, but effectively that's negative.I go in Wednesday for a consult on whether anything else needs to be done before we move on to round 2 with the frozen back-up team.

I spent the last week searching for some sort of sign - I should have felt differently, I should have "known". Any time you get a bunch of women together on the internet talking about pregnancy or trying to conceive, there's always the contests - who knew the exact moment that implantation occurred - no hints from a little bit of spotting, oh no, that's too obvious - but they felt it. Suddenly their life took on an beatific glow, and before they could take the time to drive down to the 24-hour pharmacy there was enough HCG flowing through their system that a single drop of urine would produce an unquestionable double line on the test.

You know what? They're full of shit. Sure, some women, even some women I know, experience some early symptoms, but not everyone does. Others do only through the rosy-pink glasses of confirmation bias. Others, though I find it nearly equally as incredulous, never know they're pregnant until they're about to deliver. Everyone's experience is different.

I know, though, that for at least a day or two, I had two viable embryos inside me.

I suspect the one on the left was our little over-achiever - the one that made 9 cells by day 3. I don't know why neither of them "stuck" - and I don't think that anyone will ever be able to tell us why. There were some things that the doctor may want to investigate in some manner, that's what the consult on Wednesday is about.

My husband held me while I cried - and then told me that there was no need for despair, because the back-up team in the deep freeze would do fine and in another month-ish I'd be pregnant. He had faith.

I had hope, and what it got me was another kick in the gut. Faith only seems to delay the inevitable disappointment. I suppose that firmly believing something will be true will make you happy while you wait, it could forestall any angst in the mean time, but is that really better?

Anxiety isn't fun. Though the Man does sometimes tease me about not being happy unless I have something to worry about, I don't really believe that's true. I need to guard my heart. We made the decision to move forward with this, knowing that the 80-90% chances we were quoted were good. But I also know there's no guarantee that we'd be one of those 8 or 9 out of 10 - that we could just as easily be part of the 2 - or even the single 1.

I need to know, that even if we're not successful with the reserve team that everything will be OK. Right now, I'm having a hard time imagining the finality of "no more chances". Well, I can certainly imagine that outcome, but I can't imagine what I'll actually do with myself.

For over 7 years now, we've been trying in one way or another. The interventions we had shortly after we got together, the time it took for us to decide that we'd become foster parents, the training, the waiting. The wonderful time we did have in that experience, and the stark disappointments of the reality of the whole process. The nightmare, the fallout. Hearing that my WLS may improve fertility, realizing that in terms of motherhood I'm fucking old.

I don't know what to do with myself. Almost everything has been cleared out of the bedroom the girls used to share. The only remnants are the shelves he put up, the chest of drawers in the closet, and the framed pictures of J up on one of the shelves. I had to put down the pictures of T, but I've been able to enjoy the pictures of J for what they are. But today I'm tempted to put them away, or close the door again. The black hole that hides behind two sheets of wood and a couple of hinges. It was closed for the better part of a year. We've been waiting to replace the guest bed until after we knew we'd need a new crib or not.

Part of me wants to be able to have hope, to have faith that the universe isn't so cruel as to say no to us again. I'll admit that a larger part of me right now says that to believe so is only to be in denial.

Maybe that room should be closed - otherwise it's where hope will go to die.

A Milestone: Down Below Half

When I began this blog and chose the name "Leaving Half of Me Behind" it was a cute hook more than a real goal - I knew that losing that much weight was a possibility, but I wasn't anywhere near certain that it was something I could do.

With my surgical recoveries and a few other things going on including what probably has been a bit of a real plateau, I've been bouncing around the same 1-2 pounds for the last couple months.

But, as of this morning, we've broken through that - and officially, finally, have left MORE than half of me behind:

My starting weight was 338, so half was 169 - I've finally gone under that mark. Yay! Officially I've now lost 74% of my excess weight.

That's a number that really kind of bugs me - the ideal weight calculations used for women are 100 pounds, plus (or minus if necessary) 5 pounds per inch of height above/below 5 feet. So at 5' 1.5", that makes my "ideal" weight 107.5. Sorry kids, I'd look like a skeleton at that weight. I have a picture of me as a high school freshman where I weighed 117 and thought I had a bit of a belly pooch, but really it was how my trousers fit. But I was FOURTEEN years old. My junior prom photo is when I weighed 139 pounds. I felt at the time I could lose 15-20 pounds, but again, I was 17 years old.

Using commonly available BMI calculators online, I'd need to get down to 163 to not be considered "obese" any longer, and just be labelled as overweight. To get into a normal weight range (for 5-2) would require getting down to 136. That's a maybe, but I'm not sure where I'm going to get 32 pounds off of me - realistically, plastics may take off up to 10, but do I really have 22 more pounds to lose? I'm not sure.

Though it's a silly self-portrait in a corporate headquarters ladies room, but really - I'm not sure. The belly puff is some serious skin droopage, and the boobs are empty tube socks held up in a fairly solid structurally supportive bra. Get rid of the underarms, but that's maybe a pound or two each really.

We'll have to see what happens. Plastics may be later this summer, or in another year to year and a half, depending on another little project we're doing.

We're giving having a family one last "Hail Mary" pass - I'm undergoing IVF with donor eggs (due to my geriatric age when it comes to motherhood). Just getting the cycle started, the donor has been located (through an agency, it's not someone we know), and getting ready for her to get on the meds cycle, and so a transfer will probably be another month away.

So lots to be celebrating, but that number up at the top really made my day today!