Wednesday, April 30, 2014

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 6th 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.