Ugh.

You know when you spend a weekend taking two additional doses of cytotec (rounds three and four for anyone who is counting along) and you bleed and cramp and bleed some more, all the way into the night the sunday before you have a ton of meetings on monday, and you STILL don't see anything that is definitively the gestational sac passing through the remains of what surely should be the entirety of your uterus?

Guys, this is torture.  I am still bleeding and still cramping.  By my LMP, I am nearing 11 weeks not pregnant. I am losing my sanity, not to mention, my ability to just maintain the smile that I am attempting to walk around with. 

Fellow-RPLers will understand the daily struggle of compartmentalizing when you are constantly walking around during some stage of miscarriage.  Someone should do a psych study of the women who live this way - walking around, showing up at work, dealing with our friends and families, all the while slowly being torn up inside.  We generally hide our pregnancies and thus, our losses. Seriously, this is already such a silent, isolating pain. Having your body not know how to miscarry properly, let alone carry a healthy pregnancy, is pretty much the worst of an already worst situation.

Meanwhile in logistics land, the scheduler at Dr. K's office is telling me she is booked and can't see me this week, so I begged her to pass on a message to the doctor, in the hopes that she will let me just come in this week for an ultrasound.  "I took another round of cytotec this weekend and I am bleeding but I don't think this miscarriage is complete, and Dr. K advised me that it was critical I come in for follow-up," I practically whined to the scheduler.  "Please, I have to see Dr. K, I can develop an infection and may need a D&C, but I won't know if you don't allow me to come in."

The only thing that's worse than feeling helpless about your body, is feeling helpless about your ability to convey important time-sensitive information to people who control the fate of your uterus. 

You know when your body doesn't work...

You know when you take two rounds of cytotec and after all of THAT you still haven't passed the gestational sac?  And your doctor observes that there is a pool of blood around it, it is collapsing on itself, and this raises the strong possibility that it's not stuck but just slowly releasing, and she prescribes you TWO more rounds of cytotec to take?  And she says that she believes there is a 90% chance that it will work, but you sense that she's going this route because she doesn't want to be the doctor that performs a D&C that causes your cervix to scar over again any more than you want her to be the doctor to cause your cervix to scar over again?

Pills are in hand and ready to be taken Saturday afternoon.  Funny how the pharmacist said I would be charged for a refill because my insurance won't cover refills of this drug.  Which I find darkly HILARIOUS, given that they WILL be covering thousands of dollars in surgical costs if this drug doesn't work.   Ah, the assholes of our healthcare system.

medical miscarriage update

So at some point I will post one of those "My experience with cytotec" posts we see out there, so when there's another poor soul googling "experience with cytotec for missed miscarriage" she will get yet another first-hand perspective on what the experience might be like. 

However, I need to sit on this post a bit, until I know with certainty what the outcome of my weekend was.  Did I cramp?  Yes.  Did I bleed?  Yes.  Did I pass large clots?  Yes.  Did I pass all of the "products of conception"?  Can't say.  So I will go into Dr. K's office for a follow-up ultrasound on Wednesday morning to see whether a D&C is still in my future. 

The fun of loss #5 is never ending.

Rooting from afar

Journalist Amy Klein has bravely shared her  journey of loss and IVF heartbreak with thousands of readers in her New York Times Fertility Diary on their Motherlode Blog.  

I am not being flippant about the word brave. Every time she posts an update of her latest heartbreak (she has trudged through nine rounds of fertility treatments, including two IVFs with donor eggs, and through four miscarriages) she opens herself up to the scathing comments of bystanders. The gist of which are, "what did you expect, you're in your forties and too old to have a baby. Hang it up" 

Aside from a few clomid cycles with IUI, I have avoided the special heartaches reserved for people with failed assisted reproduction procedures.  But I know all too well the PTSD she writes about connected to the miscarriages, and you all know from my own writings what a number these losses do to your psyche.

So here's the thing:  Amy Klein (who is now 43 maybe?  44?)  - who had basically been told after a bunch of failed IVF cycles in Israel that she reached the end of the road -  is now pregnant.  She's well into her 2nd trimester.  It also sounds like she has a reproductive immunologist in her corner (likely Dr. Braverman). It's unclear whether this is a natural pregnancy, or the result of donor egg IVF.

It doesn't fucking matter.

For some of us, the drive to have a baby can be characterized as primal. I can't begin to explain how you pick yourself up after failure after failure, and yet, you do.  You grit your teeth and prepare a new vision of life for yourself, but you hold on to slivers of hope.  Amy is not filled with visions of rainbows, it's clear from her words.  She writes "Yes, there are a lot of things that can go wrong, even now. Sadly, that’s one of the things this fertility journey has taught me: to prepare for the worst. Along with years of my life, money, and relationships, I’ve been robbed of my optimism, my belief that everything always works out for the best. A lot can go wrong."

Don't I know it.  I lived that sickening moment when doctors have told you that you're in the clear, and you're having a healthy baby, and suddenly  - so suddenly, as violent as a gunshot - the rug is pulled out from under you and you're free-falling into hopelessness and grief.  

Amy, you don't know me from Adam.  But as I stare down the face of a "medical miscarriage" this weekend  - one that IF IT WORKS OUT WELL will include much pain and a fuck ton of blood - I am rooting for you. Thank you for sharing this latest development.  Thank you for your bravery.

 

A fun weekend ahead

Dr. K finally got back to me.  Oh well, at least when she does actually reach out to me, she is a least helpful and kind.

I am going to attempt to get this miscarriage show on the road with misoprostil this weekend.  Along with a nice hospital grade painkiller.  She thinks there's an 80% chance it will work, though it would have better odds if I was spotting.  Apparently my placenta hasn't gotten the message that my baby is dead.  Lovely.

We had a little chat about how my local pharmacist wouldn't fill my prescription for misopsostil when I needed one pill before my last D&E with Celine.  She went on a little rant about ignorant pharmacists on their high-horses who have no idea what struggle a struggle it is for a woman carrying a much-wanted baby to need an abortion pill.  If I had the wherewithall at the time I would have ripped the guy a new asshole.  I actually realize now I blocked out the experience all these months because it was just another moment of horror in the tragedy, but I remembered that I needed her to send the script to a different pharmacy than my usual one.  (Don't get me started about how my insurance only covers drugs from that pharmacy).

We then talked about next steps if it doesn't work.  She asked where I heard about doing a D&C under ultrasound guidance, because she has had five patients recently requesting the same thing.  Did they hear it from Dr. Oz?  No, I laughed, it was Drs March in California and Isaacson in Boston, who treat women with Asherman's syndrome and recommend it.  I reiterated my ugly history with Asherman's Syndrome to her.

Dr. K made an interesting comment about how she heard of Dr. March and how "self-promoting" he was and how he treated the unluckiest of patients.... she said that she wasn't truly sure that a D&C using ultrasound would prevent scarring in a patient who was prone to scarring, but ultimately, would be happy to give it a try for me. Being one of the "unluckiest of patients" I said, I think it's worth a try.

So I will take my first dose on Saturday, and if it doesn't work, another on Sunday.  So much for doing that new zumba dvd I was looking forward to.

So here I sit, with a smile on my face for the first time in weeks. Because IF the drugs so work, I can finally grieve.  I can move on.  I can follow through on a diet and exercise plan that has been impossible to follow because I have hcg coursing through my bloodstream and I am tired as all fuck.  For the last three weeks I have felt like a walking dumpling because my body is acting like it's pregnant.

I am visualizing the drugs working.  The remaining sad end of this pregnancy will be the beautiful rose gold ring on my finger.  I will be able to drop some weight and feel good, just like any normal woman you would meet on the street who is getting ready for the summer. Emphasis on the word normal.  Someone who isn't always fucking pregnant or dealing with the aftermath of pregnancy.  Someone who can pretend to not be living a series of mini-tragedies on a daily basis.

As always I'll take any and all prayers and positive vibes thrown my way.

fingers tell the tale

The Chinese herbs aren't working.  I messaged my RE last thursday and have heard radio silence.  I called her nurse coordinator this morning, and so far nothing.  Should it be this difficult to reach a doctor?  (Rhetorical question y'all).

My therapist and I had a nice long talk on Saturday about my anger with the medical establishment. And came to the rousing conclusion that my hatred of doctors and consequent PTSD every time I have to trudge into one of their offices is hardly irrational.  I mean COME ON.

On other fronts, did you know I turned 41 last week?  Yeah, happy fucking birthday to me.  I bought myself some jewelry.

Niblet is silver.  The rose gold rings represent my miscarriages.  The yellow gold is for Celine.  I am running out of room on my third finger.  The stark visualization left my therapist - a woman mind you, who often works with women with fertility problems - at a loss for words.

You and me both, sister.

That moment

When you click on the friend of a friend's page on facebook and recall hanging out with this chick on a long-ago weekend getaway with some girlfriends, and her once saying that she would probably never have children, and then you realize that she has in fact had two children during the same time period that you lost five pregnancies.

That moment.

Dear Niblet

I looked at you while you were sleeping this morning and was floored by your face.  Even though you're six, I could see the same cheeks I stroked when you were an even littler nibble in your crib.  So beautiful, so adorable, so peaceful, even while you were pursing your lips with your eyes still closed and making the grumpus face that usually greets me when I wake you up in  the morning.  That's okay, that face happens to be really cute.  You still rock my world.

When you were three years old, we decided that because you are so awesome, one of you wasn't enough. While I am sad that we haven't been able to bring another awesome kid into our home, you never make me sad.  The last three years have felt like an endless treadmill (one day I will show you what a treadmill is and why I think it's so lame).  Trust me on this, a treadmill because I don't appear to get anywhere new....  but wow, you're the  one who is on a true journey.  You're reading, dancing, puzzling, drawing, fashionista-ing, and driving Princess to find new and inventive hiding places each day, with your boundless energy and enthusiasm.  I am happy to see that you have narrowed down your former troupe of imaginary siblings to just one, Marina, your younger sister.  Far more manageable.  I especially like how you try to teach Marina "nice" behavior and roll your eyes when she acts the way imaginary four year olds do.

You're Mommy's favorite girl.  I love you when you don't clean your room.  I love you when you throw a tantrum over a pair of leggings.  I love you even when I am telling you to get in the bathtub twenty-seven times in a row and threatening to give your toys away to needy children who listen to their parents.

I can sense your confusion at why Mommy is always taking one form of "medicine" or another....  Yes, that "tea" I grimaced down this morning in my favorite mug was really gross, and yes, I have to drink all of the packets of tea that arrived in that box in order to get better.  Yes, my tummy often hurts every few months, and sometimes I need to go into my room and rest in the dark for a few hours.  But I want you to know that your smile makes all of the pain go away. 

Alright Universe, enough.

People generally think I have scads of patience.  My career requires me to perform years' worth of research, strategizing and ruminating before seeing an outcome which may or may not be successful.  I try to roll my eyes rather than fly off the handle when my six year old acts like she's six years old. 

But let me tell you, right now I am brimming with the nervous anxiety of impatience as I wait, and wait.... and fucking wait some more, for my body to acknowledge that I am carrying a dead baby.  Because trust me, there's no sign of acknowledgment right now.  Not even a spot.  And it's driving me fucking insane.

I DO NOT want another D&C for reasons I am too impatient to list here (also since a good chunk of this blog is about my dealing with the awful after-effects of D&Cs).  According to Dr. K, misoprostil pills won't really work unless I am already spotting.  So my acupuncturist needled me up this morning in ways to induce labor, and called in an order for some strong herbs specially brewed in NYC that will hopefully help start moving this process along.  A heavily accented man (I know not from where) just called me to confirm my address to send these mysterious herbs too.  (I do have scads of trust - hopefully not misguided - as you can see).

God, please let this work.  I don't have the time for surgery (I mean, who does?), but Universe, hear my plea:  I REALLY don't have time for this.

waiting for miscarriage weirdness

So I am still waiting to miscarry and I'm all, HELLOOOOO, I do not have the time for this nonsense I am a very busy working mother who is already overextended with commitments.  And there's a storm snow which is going to stress me out more because I need some files on my office's hard drive that I can't access.....But the other day, while in transit from a conference that I had to attend whilst carrying my latest baby to mourn, I took a little mental detour from the mind clutter, and started googling where some of my friends from college who I lost track of ended up.

So I start taking a look-see at some old friends, and then that expanded the search into their roommates and acquaintances.  And typed in the name of a dude I remembered who lived with my friends who I always thought was kinda hot.  Like, "I go to the gym because I row on the crew team and I don't actually have much to say without flexing my arms" hot.  Totally not my type - even during my shallow youth - and I can recall having many conversations with this dude always thinking, you know, you're kind of a douchebag but your arms are nice.  Actually, I will always recall him as one of the only hot guys I met in college who I should have hooked up with but never did, just to be able to tell the tale of his abs.

(I know..... you all think I'm deep and profound and thoughtful, and clearly I can fake a good game).


So imagine my surprise when I type in his name, and whoa, what?  He's a Reproductive Endocrinologist?  That can't be right.  No, there's his picture (heh, still cute), there's his bio showing my alma mater, and yes, I can read properly, he's an RE whose specialties include fertility preservation for cancer patients and rare genetic syndromes.  And on his vitals patient review page there are like 20 reviews commenting on his kindness and tact abilities as a doctor by patients who suffered infertility.

And I am like, REALLY?  No, seriously, this is fascinating, because I vaguely recall his aspirations to attend medical school, and he studied a lot, but surely he was going into sports medicine.  Orthopedic surgeon, that I could see.  This guy, who I kid you not, once flexed his biceps while scolding me in the study area of our dorm because my laugh generally annoyed him (full disclosure, my laugh is indeed awful, but he might have thought I was just a little cute), was now sitting in a room with women at their most vulnerable, women who shed tears and expressed fears and pain both physical and emotional?  Working to help them achieve motherhood?

Weirdness, yo.

Not afraid

So it's been confirmed, I am having my fourth miscarriage (fifth loss).  Dr. K was really kind, and took more time than I've usually be given by any other doctor to explain what I should physically expect.  We talked about how this was likely a chromosomal issue that would be expected at my age. We talked about next steps if my body continued to fail me and cling to this doomed pregnancy.  She gave me her email address and told me to write her next week if this thing didn't get going, and understood why I didn't want another D&C.


She then sort of surprised me by asking some more questions about Celine.  "Yes, she was genetically normal," and I went on to explain how her physical defects were so much worse than usually seen in babies with omphaloceles.  Dr. K noted that she had seen a few babies like this carried to term, who had lifelong struggles with their hearts and their lungs, assuming they even made it.  "I think you made the right decision," she said looking deeply into my eyes.  It's funny, I have heard a number of doctors say this to me, but it meant a lot to hear this unusually nice RE offer her validation as well.


This past week I have spent a lot of time detaching from this pregnancy but thinking about my future.  I've said it before, and I'll say it again: It's a weird spot to be in to think about your next steps when you haven't really taken any steps at all.  I mean, I pretty much just find myself pregnant.  Sure, I am vaguely aware of when I ovulate, but that's about it.  For the past 9 months I have been working diligently to imagine our lives as is, with Niblet.  I think I have done a good job of it.  We don't save her clothes and have emptied our attic of baby items for some time now. 


I guess all of this is rambling to say, that well, I wouldn't be surprised if I were pregnant again.  That seems to be how my life goes.  I mean I could get thrown a curveball and suddenly find myself infertile, but I don't sense that as my future just yet.  And the real conclusion that I have come to about my future, is that I'm not afraid.


I have been a pretty functional human being for someone in my position this past week.  You've gotta just trust me on this.  Maybe this is the hardened shell that RPL-ers develop.  Maybe I'm a little stronger than the average person walking down the street.  Hell, maybe all of these years I've actually been a superhero, wouldn't that be cool.


On the boards I have come across a handful of women in my boat.  Not many who went through the specific hell and back that I emerged from after Celine, but certainly women in their early forties who lived through the hell of multiple early miscarriage after early miscarriage, plugging away until they found themselves pregnant with a genetically normal baby.


Maybe, if I can keep my weight down, keep my exercise up, keep taking vitamins that I really need as a MTHFR mutant, and keep getting pregnant, maybe - just maybe - I can get hit that lucky roll of the genetic dice again.  And maybe this baby wouldn't get struck by lightening.   I don't have a crystal ball.  I only know that I'm not done.  And I truly, deeply, madly believe that living my life without hope is far more destructive to me than just continuing to plug away, live my life, and hold on to that little strand of hope for as long as the ride takes me.