what matters most

Isn’t it lovely when everything comes together?  I’m not talking about toasting your nearest and dearest because years of hard work is finally paying off.  Nor am I referring to popping champagne because a troubling situation has finally been resolved.  

All of that is nice, of course, but lately I’ve find myself grateful when the smallest things align: sunshine on a Saturday, the sun setting on my drive home, or meeting friends for a happy hour than turns into dinner that turns into gelato under the stars.
You might know that I’ve been visiting the hospital every Monday at 2pm to have my blood monitored.  My doctor recently informed me that I’m cleared to start doing monthly visits, and, if my blood stays infection-free, I’ll be entirely done with monitoring by July.  

My diagnosis makes me incredibly grateful for how my treatment has progressed, and I find my gratitude spilling over for the most simple and ordinary pleasures (bright skies, warm cookies, fresh sheets).
The surgery and the healing process inspired a period of uncertainty and confusion in my life.  I spent a lot of time considering why everything happened, what it meant for the future, and how best to proceed.  Now, however, I’m beginning see how my struggle helped me refocus on what matters most.  


I didn’t mean to tell a lie. Truth is, I was suffering too much to tell anyone what was happening. Tears came fresh when I thought about my situation, so how could I possibly have a conversation about it?

Now I see that my silence perpetuates a societal problem – the last taboo, if you will – and so I’m speaking out.

We were at the appointment early, 7 weeks instead of 8, and so the doctor did an internal ultrasound to show us the heartbeat of our future child.  The baby was too young to produce an audible heartbeat, but we saw the thump thump thumping of the heart on the camera.

A tiny heart was beating inside of me.  A tiny heart created by the person I loved most in the world.  That tiny heart was my favorite heart in the whole world.

The wait for the second ultrasound finally came to an end, and Jon and I were the picture of happiness in the waiting room: we held hands, placed bets on gender, and took I-Phone photos to record the moment.  When I was brought into the office, Jon held squeezed my hand tight and then light and then tight again to convey excitement.

“Congratulations – looks like you’re just about 8 weeks pregnant.”  The sweet nurse roamed the camera over the jelly on my stomach and pointed, “you can see the baby right here.”

Blood and car accidents and needles and boom and bang and oh heavenly father.  No. Please. Oh god. Oh my god.
“They told me I was 7 weeks at my last appointment – 3 weeks ago.”  My thoughts trailed off and Jon stepped in, confident, “we’re at 10 weeks – maybe even 11.”

The tears came as quickly as the details of what was happening– the baby on the monitor before me, the same baby inside my stomach right now, stopped growing two weeks ago.  2 weeks. 2 weeks. 2 weeks.

I wanted the baby out of me immediately.  I started trembling and my mind went blank and I stared at the ceiling and wished wished wished to disappear and float away and wake up from a bad dream.

In the doctor’s own words, I’d won the reverse lottery, and was 1 of the 1,000 pregnancies that are classified as ‘partial-molar.’

Can you imagine how many things were running through my head at that moment?  Won the reverse lottery?  That’s not something anyone wants to hear, is it?  I’d never won anything, so for my first “win” to come in reverse was unfortunate at very best.

And, perhaps more confusing, what is a molar pregnancy?  Good or bad or something that isn’t wonderful but can be fixed pretty quickly?  Where were we on the scale of fear?
Luckily Jon stepped in, personifying the stereotype of ‘cool, calm and collected,’ and asked a) what a molar pregnancy was b) how it happened and c) what it meant going forward.  Thank you Jon, and now, over to the doctor.

Checking her watch, the doctor explained that a molar pregnancy occurs when an extra set of paternal chromosomes fertilizes an egg.  Moles can be partial or complete, and mine was partial.  A partial mole means that the extra chromosomes form cysts around the embryo, prevent growth, and eventually cause death.

I started to tremble.  Tears rolled down my eyes.  The pre-loved baby inside of me was dead.  Worse still, the little one had died a little over a week ago.  Jon had been communicating with a ghost when he kissed my stomach at night.  I felt sick thinking about all the times I’d rubbed my belly or talked out-loud to the baby that wasn’t there.

I wanted it out of me immediately and fast as possible and please please please just make this end.  My surgery was scheduled for the following day, Friday the 13th.

My post operation appointment was Monday morning at 10am, so I had approximately 3 days or 72 hours to recover. The weekend left me feeling well-enough to attend on my own, and so I told Jon to go back to work – he’d missed the past couple of days, and I wanted to minimize his stress as much as possible.

And then.
But I should have known.

How do you categorize levels of horror?  In the past few days, I learned the baby was dead, had surgery to remove the fetus, coped with changing life plans, and struggled to convince my body that I wasn’t pregnant.

Now I was hearing why I needed weekly blood draws to monitor my HcG levels.  I knew that my specific miscarriage, a partial-molar, meant that the baby had been killed by cysts developing over the fetus.  What I didn’t know, until now, was that I was at serious risk of developing trophoblastic cancer from the complication.  Not only had I experienced the loss of a child, but I might also develop cancer?

I asked her to confirm my fears, and she told me to remain calm, ‘the chances of the infection becoming cancerous is small, just 1-2%.”

I looked at her, trembling, and reminded her that the odds of having a molar pregnancy are .006%, “After everything else, 1-2% sounds pretty high to me.”

I’d won the reverse-lottery days before, and if my luck remained, I would need an additional surgery or radiation within a couple months.

Every prayer I’d heard about strength and acceptance ran through my mind.  Keep calm. Remain strong. Hold the tears.  The pain you’re feeling now can’t compare to the joy that is coming.  It will be okay.  One day at a time.  Steady as you go.

And then I remembered the most important question of all, “when can I start trying to get pregnant?”

“You’ll want to wait until your HcG reaches drops to 1-2, and definitely not before six months have passed.  If you get pregnant, your HcG score will be skewed, and it will be impossible to tell if the cancer is spreading.”

Right. Okay. Fine.  I had planned to spend the next 6 months preparing for birth, but in the blink of an eye, I was monitoring my blood levels for cancer instead.

Like I said, thinking about my loss makes the tears come fresh every single time.  Sometimes, however, the hardest thing and the right thing are the same: maybe I need to start a conversation about what happened.

Can we come together to create a culture of understanding and support around miscarriage?  Is it possible?  I think we can, and that’s why I’m here, sharing my story.  

My baby was pre-loved and miscarried, but I’m not alone and neither are you.  My hope is that sharing this story makes someone else feel less alone in their struggle with miscarriage.
Image of girl holding heart made with clipart from TheInkNest.