Monday, January 14, 2013

Option 3


This is the last one I'll write on fertility for awhile.  

First, thank you to everyone who contacted me.  Most of us are endurance athletes and on a daily basis put ourselves through “endurance” activities that leave most people thinking wow, you ran how far today?  Yet I’ve realized through this experience that endurance goes much further than that.  As athletes we work and we (generally) get a reward.  In pursuit of fertility, you also work, you sacrifice and sometimes you get no reward.  That said, I am utterly impressed by the emotional and physical endurance some women have with all things fertility.  Stories of women going through cycle upon cycle of IUI, IVF, flying to doctors all around the country, trying anything – diet, vitamins, acupuncture – to reach their goal.  Some were successful.  Many were not.  Some give up.  Fewer press forward.  In either case, I respect everything they’ve gone through to reach their decision.  And I’ve benefitted from hearing about it.

The other day, the nurse called.

Elizabeth, it’s _____, do you have time?

Is it just me or do the most important phone calls always come at the most inopportune times?  Like when you are blow drying your hair after masters with your phone on the counter, waiting for the call, in violation of the sign posted on every wall and mirror that says: USE OF CELL PHONES PROHBITED IN THIS AREA.

Yeah, I’ve got time.

I put myself into the most private place I could find – a bathroom stall.  And quickly realized that when your voice echoes through every other stall, it’s anything but private.

Your pathology report came back.  It was normal.

That’s both good news and bad news.  Normal is good because it means nothing was wrong with the embryos but that's not good because it means something is probably wrong with me.  But everything I've tested for says I'm normal.  

I know, it makes absolutely no sense to me either.  

I told the nurse I had my appointment with the doctor in a month.  She insisted on sooner and fit me in on Saturday.  So I went.  Still with a post bike test hacking cough (more on that in another post), equipped with 2 magazines and a book.  I’ve never waited less than an hour for this doctor and by the looks of the office when I walked in I was thinking I should have packed pajamas.  It was jammed.  

To my surprise, 30 minutes later, we were in his office, waiting.

The doctor walked in - with Chris fondling the plastic uterus (those are polyps, and those are cysts……so now all of a sudden you’re a reproductive endocrinologist!?)  The doctor is a nice guy, sharp looking, tan, with an easy going matter furthered by the warmly casual way he calls you “kiddo” before answering any question. When you’re in an office because you might have a bunch old eggs, any reference to youth is greatly appreciated.  The last time I met with him, his response was hilarious: you keep getting pregnant but what the hell?  Did I mention it was also very scientific?  This time around, he approached us with sympathy and then – no answers. He had several theories (bad genetics in the eggs, you’re a bad implanter, you’re missing a uterine protein) but nothing definitive. 

A wall full of medical degrees and awards but he had nothing for me.  

Regardless, he made a plan.  Option 1 is to hit the nail harder.  In case you haven’t been following, I am the nail and a bunch of fertility drugs are the hammer.  This gives whole new meaning to the phrase drop the hammer.  When it starts to involve a mutt mix of hormones that includes androgens (male hormones), I get scared.  I mean, I know difficult things in life tend to build character or put hair on your chest but really, folks, I do not want hair on my chest.  He lists out the doses of about 6 different drugs meant to stimulate me to make more and better eggs.  People your size shouldn’t need this much.  People my size probably shouldn’t eat as much as I do but there are outliers to everything, right?  Honestly, the thought of putting all of that into my body scares me.  One of the biggest things I struggled with through IVF was the cost to me – my body, my spirit, my long-term health.  This is my body, not a science experiment. 

And then, there was option 2.

Option 2 is something we decided we might consider if we had to.  And let me start by saying, it makes me feel uncomfortable, almost bad to be able to consider any of this.  All of this fertility stuff is a first world, modern society problem.  Which means it’s not really a problem, it’s just something we have the privilege of worrying about.  My mom told me about my Auntie Ann who had endometriosis and because of that she could only have one child.  Circa late 1940s.  Aside from the fact that Auntie Ann had every single piece of furniture in her house covered in plastic (as well as plastic runners on the carpet), she seemed like a pretty normal person.  A person who at some point got over the fact that she couldn’t have another child and moved on with her life, played cards with the ladies and preserved her house in plastic.   

But now, we’ve got science.  Which means we have lots of choices.  Choices give us the illusion that we have some control.  And control – illusion or not - is a dangerous drug.  At what point do we quit even though there is always that tiny glimmer of hope from the many, MANY choices out there?  We can go any number of routes to grow our family – more IVF, more IUI, more drugs, different doctors, the naturopathic approach.  How many do we explore?  When do we consider them all exhausted?  Or, would we be better served by an answer, a final answer that says the door is closed?  Would we be better able to accept it and move on? 

Most of the women I’ve talked to have eventually given up for two reasons: fatigue or the feeling that they’ve done everything possible.  Fatigue tends to come after so many failures - you just give up because you’re out of energy or even out of money.  Doing everything possible seems to come after checking off a list in your head of all the things you can try to get pregnant – for many women this includes giving up a lot of things (exercise, dairy, gluten) or trying new things (weekly acupuncture, meditation, yoga) while mixing it with science.  But I’m not even sure either decision can be called giving up because when you’ve done everything and gotten nothing, sometimes for years, haven’t you given enough already?

So here it is, option 2.  Gestational carrier.  This means taking our embryo and putting it into someone else’s body.  We would basically rent someone’s uterus.  And let me tell you – a uterus is not cheap!  It carries a price tag of $60-80,000 dollars.  It also carries many complicated health, legal, financial and ethical issues.  Even if we wanted to consider this, the price tag alone eliminates this as an option for us. 

So there’s really only that first option.

After about 15 minutes, the doctor stood up.  It wasn’t clear that we were done asking him questions but it was clear that he was done answering.  He grabbed our files and said “so that’s our plan.”  Chris and I looked at each other, confused.  Did he just end our meeting?  I couldn't help but feel that to these doctors, numbers are everything.  Statistics are collected for clinics around the country and people choose or refuse clinics based on them.  What doctors want are good statistics.  When he stood up, I felt like he was saying I would never be a good statistic.  My first cycle was already a failure and without any conclusive results on what is wrong with me – I would never add to his success.  He walked out of the office to leave Chris and I standing there. 

On the drive home, I mulled over the options.  I look for guidance or an answer from Chris but he tells me I need to draw my own line in the sand. When we talk about this, which isn’t often because how do you talk about this, he tells me matter-of-factly that it’s my uterus.  My decision.  At first I got angry by the lack of shared support I felt in making any of these decisions.  But then I realized he’s right.  For as much as he’s told me his wishes (to have more children), he can’t tell me what to do with my body.  He tells me to draw the line that I won’t go beyond.  I need to decide how far I will go. 

And the answer is: I don’t know.  I don’t even know how to arrive at that decision.  These are not the kinds of decisions you make in a hurry.  They take time.  But in fertility, time is everything.  This makes the situation, well….difficult.

Which brings me to my next point.  At times, this quest feels odd and desperate.  A sense of time urgency pressing upon something that is really emotionally and ethically complicated.  Not surprisingly, at times, it just doesn’t feel right.  Like we’re trying to force something that perhaps isn’t meant to happen.  I don’t have any answers on why it’s not meant to be but the more we fail, the more I wonder – maybe we just need to accept it and move on?

And that’s what I’m struggling with.  I know there are women who exhibit freakish endurance for growing or starting a family.  They put their body through marathons of IVF cycles, interventions, testing.  And they NEVER regret it.  But right now – I can’t imagine going that far.  Like the first time you realized you were signed up for an Ironman...I have to run HOW far after a 112 mile bike?  Right now I can’t see how it’s going to happen.  I can't imagine that I will ever have that kind of emotional or physical fitness.
There are times I have felt comfortable with just accepting what my body is saying to me (we can’t do this, stop forcing it) and other times I found the competitive athlete inside of me fired up to do whatever it takes (never, ever give up!).  One of my good friends went through this a few years ago and I stood on the sidelines watching her process test results and weekly doctor’s visits.  Though they could have pursued any avenue to grow their family, at some point, they just gave up.  My never-say-never attitude couldn’t understand that until I went through it myself.  At what point do you accept that there is another path for you that doesn’t include a bigger family.  At what point do you say, it’s time to walk a different path?

Through months of keeping quiet about his feelings over this, last week my husband finally said something: my midlife crisis is that I want more kids

My heart broke. 

When I heard this, I felt really selfish for thinking about giving up.  And I felt like everything was my fault.  There he was totally healthy, beaming with swimmers with excellent motility, heck, swimming fly no breath for 4K straight and I can’t do anything with them.  So many times through all of this I have felt like an absolute failure.  I’ve been successful at so many things in life – sports, business, keeping my house really, really clean – but in what matters most….I am one child away from a complete DNF.  I’m so used to working hard, getting results, pushing, expecting excellence that it’s been frustrating to find no answers for this.  But while sport is a metaphor for life but it is not real life.  Sometimes even with hard work you don’t end up with your desired result.  We can’t forget what every personal best requires: a little bit of luck and a lot of patience.

And so for now, I’m taking option 3:  give it time.  That’s right, I’m not going to do anything except wait until things settle, wait for clarity.  It might take a week or maybe a few months.  The one thing I don’t have right now is a lot of time but oddly enough – time is what I need.  According to the latest tests, I still have over 400 units of HCG in my body.  Until that number falls below 25, for all technical purposes, I am still pregnant!  Because of that, I feel like I’m at a dangerous junction of still being very emotionally connected to all of this and at risk of making a decision I might regret.  Right now, I need to step back and find some clarity and peace in my body.  No interventions, no drugs, no protocols.  Just let things settle until a solution becomes clear.  

So for now, my story ends here.  I was very tentative to open up about something that’s kept so private.  But once I did, I was surprised by how many others stepped out of the darkness.  Thanks for that.  It’s really meant a lot to me and I’ve learned from everyone.  I’ll pass on something that one woman shared with me:

I just read an article in the NY Times about writing from the most personal place in your heart - that when we share the deepest, most private stories when we write, we connect with readers/friends in a way that can't be accomplished if we only focus on the surface issues in our lives and share only the happy parts of what we face.  When you have the courage to really open the door to share something so personal, you also create an environment where others feel less alone in their own hurt.  Healing can be facilitated by sharing the wounds we carry with others.

Women need to talk more with each other about this.  We don’t need to feel comfortable with talking about it because honestly nothing about these experiences is comfortable – we just need to see the value in sharing it – for others and for ourselves.

Thank you for reading.  Now, let’s get back to talking triathlon.  Did I mention I did a bike test…?

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