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.
