Thursday, July 25, 2013

Finding my people (Part I).

The more information I devoured about partial molar pregnancies - and unfortunately it's so rare that there's not a hell of a lot out there - the more I realized I needed to find my tribe (I am Jewish, this is what we do).  Luckily, for many women who miscarry, all roads lead to Babycenter can become the center of the universe for a woman who miscarries. I wouldn't wish this upon my worst enemy, but I can promise you that if you suffer a loss that is remotely unusual, you WILL find another woman on a group board who suffered their loss under at least similar medical circumstances.  Got some strange genetic problem that your doctors have never even seen?  You're not alone.  Wrenching inexplicable stillbirth?  You have sisters in arms.  Are you bursting into tears constantly?  Do you feel freakish, inadequate, completely lost? You're not alone, I PROMISE you, and this is the beauty of (although you just have to run through the gauntlet of their shiny, happy homepage, filled with smiling mothers cradling newborns and not-at-all misbehaving toddlers, with story titles like "Secrets of Successful Moms").

I can't even begin to express the relief I felt when I encountered other women online who were experiencing all stages of molar pregnancies, with all forms of coping mechanisms. I met women from all over the globe at all points of "the journey" as its called, women who had fast drops to zero, women who had slow ones and needed chemo.  We shared our medical histories and you could picture each of us ruefully nodding our heads when we recognized similarities in our cases. 

I won't lie.  My first few weeks recovering and back at work I lived and breathed on Babycenter at my desk.  Besides having the opportunity to talk to someone else online who felt as whacked as I did, I was floored by reading descriptions that mirrored my own bizarre experiences.  That dread I felt that included a sense of multiples?  Real(!) and a symptom that was shared by many of us as a result of the super-high HCG levels that were coursing through our bloodstreams.  The intuition that something was  wrong?  Anecdotally reported by many women who had experienced molars. 

We posted our molar pregnancy bios, included details of our weekly HCG draws, and would cheer each other on for HCG drop reports the way people root at a ball game. We bitched about our weight gain (trust me, HCG counts in the hundred thousands will cause a whole lot of gain) and how we couldn't fit into pants, and confided how no one we knew "in real life" (IRL) could possibly understand the double whammy of miscarriage/cancer scare without living it. 

We also posted really practical and useful information about molar pregnancies.  Like, did you know there's a doctor in Boston who specializes in molars?  I didn't.  More importantly, he questioned the 6 month/1 year wait times given for women with partial molars/molars to try to conceive (ttc).  He believed they were outdated and not based on any real science for women who hit zero within 7 weeks.  Very useful information for anyone of advanced maternal age (AHEM) who didn't want to waste precious time as their last few eggs shriveled and deteriorated into dust. (And yes, as I write this I picture my few remaining eggs as irritable withered old crones, complete with gnarly wrinkles, spectacles and a cane).

But my HCG was dropping by more than half each week, and when I learned that you could actually email Dr. Goldstein with your case history and get his thoughts on a shorter HCG draw sentence (3 months instead of 6), well, HECK, I finally had something to be optimistic about.  Maybe I could ttc sooner rather than later.  I would just need my elusive post-D&C period to come....

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