And Now We Wait

And Now We Wait

After the letdown of our failed egg retrieval, it took a few weeks of grieving before I was ready to join the egg donation program. Some days I was good to go—let’s find that donor!—other days I dissolved into tears—like that ill-timed breakdown at a two-year-old’s birthday party.

After returning home from vacation, it was time to move on and start the process. I booked the federally-required psych consult, left a message with the business office to transfer funds from the Early Embryo Banking Program to the Donor Program, and dug through my massive stack of paperwork to find our egg donation information.

Today was our psych consult. To say I was nervous is an understatement. My stomach was boiling and my anxiety was mounting. I can teach grammar to multiple classes of 18 college students, I confidently lead work meetings, I’m completely in control in interviews, but waiting for this phone call was torture. As the clock on my phone counted out the minutes 10:00, 10:30, 10:42, 10:50, 10:53, 10:55, 10:56, 10:57, 10:58, 11:03, my nervous energy built and built and built. While the likelihood of us being rejected for the program from the consult was probably non-existent, I couldn’t help but feel that we were being judged for acceptability as parents. What if I said the wrong thing?  What if they didn’t like our answers?  Finally, my phone rang.

Our psychologist was friendly and sympathetic. She clearly understood the mixed emotions and stress of the process. She explained what our consult would include and then began asking questions. They were mostly general background questions about our personalities, hobbies, education, etc.

“How long have you been married and where do you live?”
“Tell me about the process that has brought you to egg donation. When did you start trying to conceive? How have you arrived at egg donation?”
“How would you describe yourself?”
“Where were you born and where did you grow up?”
“What is your ethnic background?”
“What is your religious background?”
“What kinds of things do you like to do?”
“What’s your career and educational background?”
“Do you have a history of mental illness or is there one in your family?”
“Do you smoke or have you ever smoked?”

None of these questions were particularly surprising. Most of them we’d already answered on some form one place or another. At the end of the call, I felt much better—like we’d “passed.”

In addition, to the psych consult, today I submitted our recipient profile and pictures. This form included a section in which we indicated our physical characteristics: eye color, hair color, body type, height, weight, skin tone, etc. as well as a section where we identified our desired characteristics in a donor. This section is harder. Of course, we wanted someone similar to me. However, how realistic is that expectation? We don’t want to wait forever for the “perfect” donor who may or may not exist.  We knew from looking at the database months ago that my physical characteristics were not typical of the donors.  I had to remind myself that ultimately we choose our donor and the nurse matches our physical characteristics, regardless of what we put on that form. We also had to send in pictures, we used the photo above for our couple photo and these two for pictures of me in my early twenties.

Since completing these steps, we have the ability to “reserve” a donor from the database. Unfortunately, egg donation is not a booming business with women of all shapes, sizes and ethnicities lining up around the block. In addition, our clinic has a stringent screening process for donors; approximately 90% of women who apply to be a donor at our clinic (both recruited by our clinic and those from donation agencies) do not qualify. This morning there were three women in the database, no matches.

So, for now, we wait and check the database every Thursday evening, looking for our children’s mother.

The Cast of Characters

If you know me, you know I’m not an overly emotional person.  I’m pretty steady and my emotional baseline is pretty low.  I don’t do gratuitously happy or overwhelmingly sad.

Infertility has changed that.  The full cast of less desirous emotions has taken up residence with me and are haphazardly taking turns being in charge.  I’m hopeful, I’m crushed, I’m okay, I’m sobbing uncontrollably, I’m almost manically deep cleaning the house, I’m curled in the fetal position alone in the dark with unstoppable tears running down my cheeks.

Meet The Cast:

Fear: When we didn’t conceive naturally, fear arrived.  He always shows up early and stays late.  He diligently attends every appointment and consultation, sitting in my shadow.  At each step, he thinks about what could wrong: what if the test results are bad, what if I can’t give myself the injections, what if the eggs aren’t there, what if there are no embryos, what if the embryo doesn’t take.  His loudest refrain is, what if we can’t ever have a child?

Sadness:  She’s like a death, but different.  She’s the death of potential, opportunity, dreams.  She crawls in my lap sometimes and lays her little head on my shoulder, and I find myself with silent tears streaming down my face.  Other times she slaps me hard and fast right across the face as yet another tv show or commercial or facebook advertisement about pregnancy or children parades into my life.  And she’s not just bringing my sadness she’s also carries sadness for my family.

Guilt: Guilt is the trickster of the cast, appearing and disappearing and causing general chaos and mischief.  He first appeared with my test results, shoving the irony in my face.  We went to the specialist because of a diagnosis of male factor infertility. However, our type (somewhat lower sperm count, somewhat decreased mobility) is really a non-issue in the IVF world.  As the doctor explained, if you have ten eggs, you only need ten good sperm.  In addition, our facility uses ICSI (intracytoplasmic sperm injection) where they literally place a single sperm into the egg, no swimming required.  However, the testing revealed I have low ovarian reserves (meaning fewer eggs), and there’s no way to “grow” more.  I also have compromised egg quality (meaning more damaged eggs), and there’s no way to repair them. So, guilt comes around to tell me it’s my fault we can’t conceive. Guilt even texted my husband one day and asked him if he resented me.  He said no.  I believe him, but guilt could understand if he did.

Helplessness:  After our egg retrieval procedure, Helplessness snuck into my recovery room and handcuffed me.  When the doctor reviewed our results, I asked what our next move should be.  He said there was nothing different I could do, and he didn’t expect another round would yield any better results.  We should move on to a donor.  I had done nothing wrong: I was apparently in early menopause determined by my genetics. He suggested there was some comfort in that.  Helplessness snickered.

Regret: I was 28 and he was 30 when my husband and I married.  We didn’t start trying to conceive until I was 32.  In the intervening years, we moved twice, bought a house, built a shop, started a business, and grew my career.  Those years were important to us.  But Regret asks a lot of questions:  What if I hadn’t wasted those years?  Would I have been able to conceive naturally at 28?  With IVF at 30?

Isolation:  At first, Isolation was subtle.  Puppeteered by the other emotions, I didn’t really notice his arrival.  People suggested I join an online support group, but I couldn’t.  I didn’t have any reserve left to deal with anything else.  I couldn’t find sympathy or joy for others. And I didn’t need or want their emotions or stories.  I needed to be alone.  My infertility is selfish, and Isolation is more than happy to oblige and separate me from the world.

Depression:  Close on Isolation’s heels, Depression appeared disguised as Sadness and Guilt. While some people describe depression as a downward spiral, mine isn’t.  He’s quicksand.  If you know anything about actual quicksand it’s not that quick.  It’s not like a sinkhole that opens up and swallows everything all at once.  Quicksand is actually pretty slow, so you don’t really notice it.  One pajama clad hour at a time, Depression sucked me down.  I was immobile, emotionally and physically.  I spent weeks sitting in my living room floor doing puzzles and binge watching crappy reruns.  Sometimes, it was a good day if I showered.  I didn’t have the energy or desire to resist.

Hope:  And then there’s Hope, flitting around the periphery of it all.  She is a shy little fairy.  If I look directly at her, she vanishes.  Most of the time, Fear and Sadness and Guilt and Helplessness and Regret and Isolation and Depression keep her away, but sometimes I feel her presence in the room when the others are busy bickering about whose turn it is to be charge.

Infertility is Grief

Infertility is grief.

But it’s not one incident of mourning.  It is grief in repetition, one loss after another after another.  You mourn the financial strain, the stress, the hope, the plans, the opportunities, the dreams, the fantasies, and the reality.

First, I lost the fantasy of “just getting pregnant”—of taking a test and being unexpectedly, pleasantly surprised because we hadn’t really been trying.  When not “not trying” didn’t result in pregnancy after a year, I mourned this loss, and we started actually trying.

We monitored and tested and tracked and planned and scheduled for nearly a year.  But each month was another loss, more grief.  Eventually, we accepted that trying wasn’t working.

This time I mourned the lost time and another fantasy.

We went to the doctor, took the tests.  We hoped that it was nothing, fearing that it wasn’t.  We got more news—more loss.  Male factor infertility; see a specialist.  I mourned.

Then we made the appointment, went to the specialist.  I took test after invasive test after invasive test and waited for results.  One loss confirmed: male infertility.  Then a new loss: low ovarian reserves and compromised egg quality.  In other words, my eggs were few and old.  We were given a 30% chance of conception with my eggs and an increased likelihood of chromosomal abnormalities in an embryo.  The doctor suggested an egg donor.  This grief was all-consuming.  I fell apart.  For the two weeks of Christmas break I alternated crying and numbness.

Eventually, we decided to try with my eggs.  We had a 30% chance of conception with one IVF cycle.  We were on a program to do three retrievals.  After a month of priming and ten days of the highest dose of injectable medications, we went in for retrieval.  Only two eggs.  I was too sick and tired from the anesthesia to mourn.

Over the next week, I mourned new developments each day: the low egg number, the fact that only one was mature, the fact that it didn’t fertilize, the fact that the immature egg matured but didn’t fertilize, and when amazingly it had fertilized, the fact that it didn’t continue to grow.

Two days after retrieval, the doctor said he was surprised and disappointed.  He had hoped it would go better.  My age was in my favor.  But there was nothing different to do.  The other two retrieval cycles would be futile.  He returned to the egg donor.

I know we should start the process, but I’m mourning.  I’m mourning the loss of having my own child: a little girl with my blonde hair and his bright blue eyes or a little boy whose orneriness reminds of me of my own brother’s .

A womb is a place to store dreams.  It is also the place where sometimes dreams must die before new dreams can be conceived.

Going Public

I’ve been very private about the majority of our reproductive journey.  When we started trying to conceive, I didn’t want anyone to know.  If no one knew, no one would be disappointed if….  At that time, we didn’t know we had any problems, but still, I didn’t want anyone else’s expectations; I had enough of my own.

As the process became more challenging, a few people were let in the loop out of necessity.  Their expectations started to mount.  They were excited for us.  But their excitement didn’t bring me joy, only stress.  The baby items and names and party ideas only emphasized that I wasn’t pregnant every month.

Meanwhile friends and family not in the know continued to ask when we were going to have kids.  My husband and I always exchanged the look.  He knew that question was getting harder and harder for me to answer.  Sometimes I made a joke to avoid the topic.  Sometimes he took the lead. Sometimes people didn’t take the hint and continued to press the issue.

When we started seeing the specialist and contemplating IVF, a few additional people were involved.  Adding each person was tough for me.  Sometimes I wanted to talk about the process and our situation.  Sometimes it’s all I wanted to talk about.  It was, and is, certainly all I can think about much of the time.  But, sometimes, I didn’t want to talk about it.  To anyone.  For any reason.  I didn’t want to explain the procedures, the diagnoses, the predictions.

I especially didn’t want to hear the sympathy, the hope, the advice.

The sympathy is often conveyed through comparison.  Everyone knows someone who had trouble conceiving or was told she’d never have children only to conceive.  Telling me about her doesn’t help.  I’m not her.  I’m not going to magically conceive.  (And this only reinforces the incorrect but pervasive internal dialogue that everyone else can have kids but me.)

Hope is harder.  I’ve heard at each step from outsiders (those not directly involved in our reproduction: me, my husband, or our medical staff) to “think positive.”  No, I’m thinking realistically.  I am already emotionally bankrupt; I can’t afford to get my hopes up.

Or I’m told, “If it’s meant to be, it will” or “It’ll happen when the time is right.”  Given the medical reality of our situation, what I hear is that I’m not meant to have children.

And then there’s the advice.

“Just relax.  You’re too stressed to conceive,” as if lowering my stress level will change my genetic early menopause and miraculously, more eggs of stellar quality will appear.

And the obvious not-advice: “You shouldn’t have waited so long” or the more insulting, “You shouldn’t have been such a prude all those years.”

In response, I give you this excerpt from The Commodore by Patrick O’Brian (or so the facebook post claimed):

“To a tormented mind there is nothing, I believe, more irritating than comfort.  Apart from anything else it often implies superior wisdom in the comforter.  But I am very sorry for your trouble, my dear,” said Dr. Stephen Maturin.

The Captain replied, “Thank you, Stephen.  Had you told me that there was always a tomorrow, I think that I should have thrust your calendar down your throat.”

So if not for the sympathy, hope, or advice, why go public at all?  There are several reasons.  One is that it’s hard for me to answer questions on the spot, especially emotional ones.  It’s much easier to articulate my thoughts here.  Writing is helping me sort out this complex, messy, every-changing situation.

Another reason is the prevalence.  Statistically one in eight couples will struggle with infertility.  Think about that: one in eight.  So, statistically, how many people should you know who’ve faced a reproductive challenge?  Now, how many do you know of?  That is the most important reason: awareness.

And in the interest of awareness, I must be open to dialogue (but in the interest of self-preservation, I must also have boundaries).  You can ask questions.  I’m comfortable with the scientific ones.  In fact, the whole process is incredibly fascinating.  The emotional, personal questions are harder.  You can ask, but realize that I may not want to answer.  Or the answer I have now may change later.  Or I may not have an answer at all.  And if you don’t know what to say or have nothing to say, that’s okay too.

Doesn’t it make you mad…

Doesn’t it make you mad that “all those other unfit people” can get pregnant and you can’t?

I hear some version of this a lot.  How it’s unfair that people who don’t want, shouldn’t have, can’t care for a child just “get” pregnant (or have an abortion). I understand why people think this.  It would make sense for the injustice of it all to anger me.  Here I am doing “everything right,” and yet I will never have a child while others doing everything “wrong” have baby after baby.

However, this doesn’t make me angry.  For many, it’s a strange reaction, I know.  But I truly believe that people do the best they can within their circumstances.  While I might not make the same decisions they do, it’s not my place to judge them. I know about making hard decisions and facing harsh realities.  Life is difficult enough without others’ judgment.

Also, their fertility is the not cause of my infertility.

However, this isn’t to say that I don’t have strong reactions to others’ reproductive success.  At my age, the vast majority of my friends have children.  Obviously, much of their social networking includes stories and pictures of their adorable kiddos.  While these are beautiful and even hilarious, they also hurt.  I’m happy for them but sadder for myself and my husband.  And I know my reaction is selfish.  I know how loved and happy their children are, but my heart aches with each new pregnancy or birth announcement.

And yet I find myself drawn back again and again. It’s infertility masochism.   It’s picking a scab that isn’t ready to fall off.  It’s going to hurt and bleed, but I do it anyway. I even have secret list of all the friends, acquaintances, and even a few minor celebrities who have had children since we started trying.  Some of them have had two.  Some of them have families big enough to start their own basketball teams (even if the bench wouldn’t be very deep).  Some of them thought their families were complete a child (or even two ago).  Many of them are older than I am.

But as much as it hurts, I can’t be angry.

Too many have survived infertility
Too many have survived miscarriages.
Too many have survived infant loss.
Too many have survived making difficult reproductive decisions.
Too many have suffered in silence.

Too many of us hurt when we see those pictures of other people’s children.  So we smile, sadly, but we aren’t angry, and we don’t judge.

How do you choose the mother of your children?

With egg donation as our next option, I’m struggling with the idea of choosing my child’s mother.  While I understand that I will be the child’s mother both in practice (day to day life) as well as some biology (I will carry and give birth to the child) and that these two things matter much, much more than DNA, there is a still a very large part of this little person that will not be mine.

And I know that on some level all parents hope to see themselves in their children and have to learn that, regardless of their best intentions, often their children are going to be who they’re going to be, independent of what we hope they inherit from us.

I know all of this, intellectually. But emotionally, I’m torn.  I won’t be able to look at my newborn and say she (or he) has my nose or cheeks or eyebrows.  And I know that these comparisons will still happen.  I’ve watched adoptive parents giggle a little when a stranger comments on the similarities between them and their mini-me. And I know at some point, none of this will matter because that child will be mine.  But in the meantime, I’m grieving which makes selecting a donor much, much harder.

Part of our process is to complete a profile to help us match with a donor.  It includes a range of information from physical characteristics to education to three-generation family medical histories.

Do we want someone who looks very similar to me?  Do we want someone whose looks would “fit” with our families?  Do we care about looks at all?  What education level, GPA, testing scores do we want?  What profession?  Hobbies?  Interests?  Childhood family experiences?  What family medical conditions are deal-breakers?  Does the mother’s motivation to donate matter?  What if she has other children of her own?  What if she has donated before?

How do you pick the mother of your children?

The IVF Rollercoaster

I’m a realist.  Many would say pessimist.  I don’t get overly excited or have strong emotions about much of anything, ever.  Even with my typically even-keel, IVF is a roller coaster.  One minute you’re trudging uphill one clack, clack, clack at a time, knowing the top is growing closer and closer, and the next you’re hurtling downhill with your stomach in your throat, tears in your eyes, and a white-knuckle grip on the handlebar.

We started the slow trudge almost exactly two years ago.  We tried to get pregnant on our own.  Then we used ovulation tracking kits.  Then a year ago we started with the doctors.  A few months ago, we went ahead with the first cycle of IVF.

IMG_2451

When this arrived in the mail, we were nearing the top of that first big hill, the one that sends you rushing non-stop toward the end.  Even though our IVF journey would be more like riding every terrifying roller coaster in the park repeatedly, the arrival of this package was simultaneously exciting and anxiety-inducing.  We were strapped in and committed.

I white-knuckled through the seven days of medication, one injection blurring into the next.  The initial ultrasound at home only showed four decent-sized follicles.  My stomach dropped.  Four was disappointing but not impossible.

Optimism rose as we crested the next hill, and the ultrasound showed eight follicles. However, the rush was short-lived.  The next day showed only six, with four larger.

Two days later, we were nearing the end of the ride.  We checked in for surgery.  Still groggy from surgery, the last loop to stung me more than it should have.  The doctor explained that only two eggs were retrieved.  There were four larger follicles, but perhaps one was empty, and in the other the egg may have remained stuck and not released.  We were coasting through the last of the track toward the end.

The next day, traveling home, that little dip right at the end of the ride caught my stomach again.  We got the first phone call from the embryologists.  One egg was mature but did not fertilize.  They would hold the egg for another day just to be sure it didn’t start to divide the next day.  The other egg was immature at retrieval but had matured over night.  They would attempt to fertilize it.

The next day, the brakes caught, and we were jerked to a stop.  The mature egg didn’t divide–no embryo.  The immature egg showed no signs of fertilization.  We talked with our doctor, determining that the ride was over for me.  I hadn’t responded to the highest dose of medication; it was unlikely that repeating the process two additional times would have a different outcome.  We needed to find a donor.

However, like any really good roller coaster, there’s always one more flip, the one that blindsides you, when you think the ride has ended.  The next day, my voicemail contained a message from the embryologists.  I knew they would confirm the non-viability of the second egg.  To my shock, they explained that the egg was cleaving to divide.  It had fertilized.

Our roller coaster isn’t over yet.