Tuesday, July 30, 2013

Test Please.

The weeks following my provera challenge blur together in a clump best described by the word ARGH.

There's some positivity:  I continue to get regular blood draws to monitor my HCG as per molar pregnancy protocols (and totally imagine an office pool betting on my mortality every time I show up with the bandages on my arm), but I catch a break and my HCG, which dropped to zero in less than 8 weeks, seems to be staying at zero.  Having read many a post on the molar support boards about women needing chemo, I am truly thankful.

But my period is nowhere to be seen, and I am pretty much doubled over in pain each month on the exact day I expect it to show.  I mean pain, like labor pain pain.  My OB write me a prescription for a sonohsyterogram, but says, "I have never had a patient with scarring after a D&C in my years of practice.  It would be like getting struck by lightening."  Seeing as the whole fucking partial molar pregnancy - you know, the kind of pregnancy that brings with it a cancer scare - is like a fucking lightening strike, these words aren't comforting.

And then I can't find a doctor to actually perform the test.  My insurance requires it at an Advanced Radiology Lab, but the doctor is only there once a week, and we can't seem to schedule it properly around what I believe my cycle to be, blah blah blah....it's just beyond irritating.  So I ask for a referral to a Reproductive Endocrinologist (otherwise known as an RE) because these tests are what they do.  Maybe an RE can take a look-see at my uterus. 

So at this point of my journey, I am sent to the offices of "BABIES GUARANTEED" Fertility Clinic.  Look, full-disclosure:  I personally know many women who have landed in this clinic for reproductive assistance.  And from some of my research, if you need IVF or IUI, they're the absolute bomb.  But at this point in my journey, I didn't need to even consider reproductive assistance, I just want someone to take a good look inside my uterus and see what's goin' on in there.

My first visit with Dr. X at the clinic does not get off to an auspicious start.  He asks for my history and his face lights up at my advanced maternal age, because I am old, but not too old (cha-ching).  The lights shut off a little when I explain my recent pregnancy, and the existence of niblet, an easy unassisted pregnancy. Clearly I can get knocked up.  And when I take it upon myself to describe how my period has been MIA, and perhaps maybe I am a walking case of Asherman's Syndrome, he hits me with the words that ruin our doctor-patient relationship forever:  "You should really stop reading things on the internet.  You're not a doctor."

OK, folks, I have known and loved many an actual hypochondriac, and I assure you, I am not one.  No, I am not a doctor (though if I wanted to be a complete douche about it I could technically say that I am a Juris Doctor).  I understand all too well the perils of WebMD.  Like, I know from firsthand experience that if you make the mistake of typing in your cold and headache symptoms into Web MD, you will be told that you are either suffering from a) Allergies or b) SARS.  Not to mention I research shit for a living.  Trust me, I know the importance of a peer reviewed study.  So when I suggest to Dr. X that perhaps my symptoms indicate Asherman's Syndrome, I would appreciate not being pat on the head and told to be a nice little girl and stop reading big words.

Jeesh, this was proving to be a long road.  Even longer when Dr. X said a few more irritating words: "I want to do some blood work and see whether your hormones are at issue."  Two steps forward, three steps back.

If you google it (or, Finding my people, Part II)

So, I'll make a confession, I started googling "(insert number) weeks after a D&C and no period" way before I hit 10 weeks.  It was probably after 6.  I got many hits, most of them on various pregnancy support boards.  I read post after post, and saw most women suggesting to each other some variation of  my OBs theme, "Patience, it will come."  But a few posts caught my eye, ones where women questioned whether they could be suffering from something mysterious sounding called "Asherman's Syndrome."

I perform all kinds of research for a living.  By the time I embarked on my provera challenge around 10 weeks post-D&C, I was already pretty well versed in Asherman's.  A wiki page described the ailment as follows:  "Asherman's Syndrome is a condition characterized by adhesions and/or fibrosis of the endometrium most often associated with dilation and curettage of the intrauterine cavity." Basically, the gist is that your uterus forms scar tissue after surgery.  This doesn't sound pleasant.

Strangely, when I investigate further I come across the following website:  www.ashermans.org, the home of the "International Asherman's Association."  Great!  This problem doesn't just have a name, it has a whole association backing it up.  Who introduce themselves in the following friendly fashion:  "Welcome to our site. If you are looking for information and support for Asherman's Syndrome, intrauterine adhesions/scarring, or related problems, you've found the right place."

And under the heading "Symptoms" I read:  "Most patients with Asherman's Syndrome have scanty or absent periods (amenorrhea) but some have normal periods. Some patients have no periods but feel pain at the time that their period would normally arrive each month. This pain may indicate that menstruation is occurring but the blood cannot exit the uterus because the cervix is blocked by adhesions."  Fuck yeah!  That sure sounds like me.

But as I continue to read the extremely well-presented information on the site, I start to get a bit of a sinking feeling.  Say, from this statement:  "Asherman's Syndrome is thought to be under-diagnosed because it is usually undetectable by routine diagnostic procedures such as an ultrasound scan."  Pristine lining my ass, I think to myself.

Reading the information provided by these kind people empowers me, but also frightens me.  I read about diagnostic tests that I could well need, yet barely pronounce, like sonohysterography, hysterosalpingogram, hysteroscopy.  But all of this is sort of like putting together a puzzle, and I like the idea of approaching the issues in my uterus in a Sherlock Holmesian fashion.  I read that missed miscarriage cases that require D&Cs could increase the risk of Asherman's, as well as studies that show that a woman's uterus can be vulnerable to scar tissue forming there if "retained products of conception" are left in there too long.  And I morbidly realize that I was carrying a dead baby in mine for nearly 6 weeks.

All of this is fascinating, and I am thrilled to see that the Asherman's peeps have a yahoo group that one can join, and with that membership, you get even more information, as well as the ability to talk with other women who are suffering with you.  So even though I realize am nowhere near an official diagnosis of this  malady by a medical professional, I make the decision to join this group.

Readers, this will prove to be one of the smartest decisions I have ever made in my life.

Sunday, July 28, 2013

Waiting and waiting.

Anyone who has experienced fertility problems or reproductive issues is familiar with the waiting.  EVERYTHING involves an anxiety ridden-wait in what is actually a pretty short cycle.  If you're trying to have a baby, the two-week-wait for a "Big Fat Positive" (BFF) on a pregnancy test can feel like an eternity (more so if you are waiting on results after expensive fertility treatments).  You wait for you period to start, you wait for your ovulation surge, you wait for the ability to pee on a stick.  No BFF?  Rinse and repeat.

And if you had to undergo any kind of surgery involving your ladyparts, I promise there are more waits, the most important being: when the hell will I see my period?

It was roughly a month after my D&C when I started to get a little angsty (though I admit, and you're possibly figuring out now, angsty is my normal state in life).  I was sure that I could feel myself ovulating a few weeks after the surgery, I always get pretty sharp cramps on one side, and then two weeks after that I was crampy.  In this case, crampy was good, I should expect my period.  Except it didn't show.  And two weeks after that, once again, I could feel my lopsided cramp.  And like clockwork, two weeks after that I had more cramps that totally felt like a period.  But again, nada, it was nowhere to be seen.

So of course I call my OB, who tells me that I really shouldn't worry, because a body needs time to "reset" after a D&C.  Which makes sense, but why am I cramping?  Besides. it's been over 8 weeks since my surgery. "Let's jumpstart your period," she says and she writes me a Rx for Provera, a form of progesterone.   If that doesn't work she will agree to perform a few tests on me.

So I dutifully take provera for ten days, google the shit out of it and learn that what I am doing has a fun, sporty kind of name, like something out of a fitness magazine, it's called a "Provera Challenge."  I get a grim sense of foreboding, because I have never been one for challenges.  I'm just not sporty, I can barely run three blocks, let alone marathons.  And my instincts were right, because all this challenge does is continue make me crampy.  Really motherfucking crampy.  But without blood.

So I am then brought in for an ultrasound and blood-work.  Fast forward a few days later and my doctor calls me.  'I have great news, your lining is pristine and your hormones are exactly where they need to be, your estrogen, everything, it's perfect," she says.  "Based on what I see on your ultrasound you should get your period this week.  You're just worrying too much, anxiety can really mess up your body"

I'm worrying too much.  Anxiety.  Hmmmm.  Despite the fact that multiple viewings of a dead baby on an ultrasound will do that to a girl, I embark on a regimen of exercise and massage to curb the ole nerves.  Want to guess what happens next?  Well, it doesn't involve a maxipad, that's for sure.

Friends, it's at this point that I call bullshit.  Because while I am often neurotic, I am not an idiot.  Something is wrong, and it's clearly physiological.  Every month, on the clock, I get cramps and every month they fail to bring bleeding.  It sounds like something is blocking my menstruation, right y'all?  So I type "10 weeks after D&C and no period"  into google and then start reading about something called Asherman's Syndrome...

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

Babycenter.com 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 Babycenter.com (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....

Cancer Baby.

Within a week of my D&C I finally get a call from my OB.  "We've found some interesting results from the pathology on your baby's remains," she says.  Class, we all know that "interesting" is never a word you really want to hear from a doctor.  I am then informed that the pregnancy was a partial molar pregnancy.  A what? 

This is a rare chromosomal turn of events, "Like one-in-a-thousand," says my doctor.  My pregnancy was actually leaving behind tumor-like cells called "moles" that could become cancerous.  Luckily for me, the D&C is the precise protocol in a molar pregnancy, clearing out the bad cells.  AHA!  Things are actually making a strange sort of sense now. Is this why ER doctor couldn't identify what he was looking at in my ultrasound?  Did it appear that there were two sacs?  Yes, I'm told, there were the beginnings of "grape-like clusters" around the fetus that are the hallmark of molar pregnancies.*

My HCG would have to be monitored for 6 months to ensure that all pregnancy hormones were out of my system and stayed out.  "Wait, hold on, I have to wait 6 months before I can try to get pregnant again?" I nearly screeched.  My doctor explained that the problem with molar pregnancies was that the HCG was the marker for the moles.  If my HCG went down adequately each week (dropped by 50%) I was good.  If it rose, or even plateaued, I would need chemotherapy.  And if I were to get pregnant, my HCG would rise, but there would be no way to determine whether it was rising as a result of pregnancy or whether I was developing trophoblastic disease that becomes cancer.  Lovely.  "Have you ever treated this before?" I ask my doctor, and she says that being in a big city hospital she's seen a few patients with this, and once had a patient get knocked up before the prescribed wait time.  "It was stressful for everyone," she added.  Yeah, I bet it was.

And so I proceed along the path of a new normal.  I could barely internalize the loss I experienced because I had to worry about CANCER.  I embark on blood draws at the hospital to detect HCG each week to see how fast I can "resolve to zero."  Every week I meet a nice new phlebotomist at the hospital asking me if I am pregnant because they're collecting blood in the HCG count vial.  Every week I show up to work with a bandage on the veins in my arms and people start to notice (it's summer-time and sweltering).  It's actually sort of twisted because after about three weeks of this co-workers start to believe I am really sick.  I mean, I sure look sick and anxious and miserable.  And bloated, because we all know how fast baby weight comes off.  And frankly, I haven't told anyone about the pregnancy, so I just tell them "I am being monitored for cancer," not technically a stretch. I confess spending a few moments of wondering the ethics of this, but fuck, I lost a baby.  I wasn't in a state of mind to explain the exact science of what was happening inside my body.

* Fun fact - In a complete molar pregnancy, unlike the partial molar pregnancy, there is no embryo that forms at all, no sac, no nothing, and it is much like a blighted ovum.  The body is fooled into pregnancy with a high HCG count from the moles that form immediately.  The wait time for trying to conceive after a complete molar pregnancy is 1 YEAR, so I guess I got hit by the lucky stick,

Tuesday, July 23, 2013

Scraping me softly.

Leaving aside how loaded the D&C is as a surgical procedure - emotionally, physically and hell, politically - mine was a complete clusterfuck.

Lounging around my house in sweats at 11am, waiting with my husband to drive me five minutes to the hospital for my scheduled 12:30 procedure, I get a call, a frantic call on my cell from a number that looks a lot like the hospital.  "Where are you???" asks the surgical coordinator?  Umm, at my house miserable.  Wait.  WHAAA???  You're telling me that my D&C was scheduled for 11am?  No.  Absolutely not.  I was TOLD by your office to arrive at 12 for a 12:30 surgery with Dr. C.  What do you mean Dr. C isn't my surgeon today?  What the hell is going on?  Tears are welling in my eyes as I sit at a table furiously pointing to my desk calendar, as if she can see me.  You know, maybe you can mistakenly pencil in the scheduling of foil highlights and a pedi.  But when your baby dies and you are getting it surgically removed from your uterus?  You tend to MAKE SURE YOU ARE ON TIME FOR YOUR ABORTION. 

Large OB practice fail.

And so proceeded the day as I arrived to the hospital as fast as humanly possible.  So much for all of the meditation I was going to practice the half hour before.  Thanks universe.  My doctor (the OB who delivered niblet - or at least, who began niblet's delivery, another story entirely) met with me, assuring me I wasn't making a mistake, that based on her read of my ultrasounds, I had definitely already miscarried, probably weeks ago, and my body was holding on to the pregnancy.  (Have I mentioned how much my body LOVES being pregnant? Trust me on this).  She explained how she would gently scrape the products of conception out from my womb with a curette.  While I was getting blood drawn, she cracked jokes and complained with the nurse about how awful it was that power outages in our area forced her to return home early from a vacation - back to her kids - because the nanny couldn't hack it.  Hardy har har.

I asked how many days off I should expect from work, and she told me I would be physically fine the next day.  She could tell from my expression that clearly this was not the answer I wanted.  If I had to lose the baby of my dreams, I should at least get a few sick days out of it. 

Roughly 45 minutes later it was done.  I was in twilight sleep and have no memory of anything besides lying in an operating room and then waking up somewhere else. 

My husband came to greet me when I awoke and a sweet new nurse handed me something that may have actually saved me that day:  a doctor's note pulling me out for the rest of week.  Gee, I guess my indignant face worked.  Still, I felt numb and shell-shocked.  I walked into that hospital nearly 12 weeks pregnant.  I walked out scraped empty.

Monday, July 22, 2013

A little bit pregnant.

In April of 2012 I was pregnant.  At first I was feeling smug and pretty damn proud of myself.  After all, I had found myself a new job close to home (I used to be an 3+ hour a day EXTREME COMMUTER) and I had discovered the joys of dropping then 3-year old niblet off at daycare at 8:30am instead of the crack of dawn. I had finally found a way to be closer to my child and see her for more than three paltry hours a day.  I could finally imagine bringing a sibling into niblet's life and hey, actually seeing my children! I carefully calculated the time I needed for my FMLA to kick in at my new lower-paying but close-to-home job, got myself off the pill for three cycles, responsibly took my prenatal vitamins, and when the day arrived I theatrically said to husband, "The time is now."  And BAM, just as with niblet years before, I peed on a stick and learned that we got ourselves knocked up on the first try.

Except this time, as the weeks progressed, something felt wrong.  I thought I felt some nausea, but not quite.  I was bloated and feeling generally icky, but I didn't feel pregnant.  I had already been pregnant, and this didn't feel like pregnancy.  Yeah, yeah, I know, no two are alike, but honestly, this just felt off.  This just felt like dread.  With niblet, I always used to joke about the baby parasite inside of me, laugh about how she made me felt like a host body to an alien.  But this time I really did feel like something was growing inside of me that was unhealthy and maybe out of science fiction, seriously, it felt like it would go all Alien on me and pop out of my midsection.  Of course I was too scared to articulate this to husband, or anyone for that matter.  Knowing enough about how quickly things could go wrong, I chose not to announce the pregnancy to anyone, except for one close friend at work who could be there to talk me off the ledge should the situation take a bad turn (or should I need someone to cover for me if I started puking my guts out).

I waited patiently for my 8-week ultrasound.  As the day drew closer I tried to verbalize my anxieties.  I was by then completely convinced that I was carrying more than one alien, and would wake the poor man who slept next to me up, at all hours in the night, with my rants. 

"What if I am carrying twins?  What will we do????"  (Husband rolls over, looks at me incredulously).

"I AM advanced maternal age after all, statistically speaking I am likely having multiples!!!"  (Husband murmurs that I should really get a grip).

"Oh my god, sweet jesus, where the hell will we put two babies in our little house!?!?" (Blank Stare).

"What was I THINKING when I decided to get pregnant?  Am I INSANE????" (Husband rolls away)

The 8-week ultrasound day finally came. Unlike niblet's, this time I was experienced, I went alone. 

And this time I experienced my first stupifyingly bad ultrasound, that moment some women will recognize where your doctor can't find an actual baby with a heartbeat.  Dr. C (not my usual doctor in my very large OB practice) tried to convince me that my dates were wrong. "I see a gestational sac and a yolk sac measuring about 6 weeks, you should come back in two weeks.  Besides, your uterus is quite tilted, it's hard to get a good view in there....."  But I knew.  I could tell him what I had for dinner the night we made this baby.  There was no way that my dates were wrong, and I left the office dejected and scared and feeling in my bones that I was going to miscarry.

Husband however, upon hearing the news, was unconvinced, and being of the generally "glass half full" disposition, wasn't ready to give up hope.  The woman's cycle is a thing of mystery to him, and perhaps my dates were wrong.  I was wrong about that multiple business after all.  Shouldn't I trust my doctor?  Why would Dr. C attempt to convince me of the possibility I was carrying a 6 week old healthy baby if I wasn't?

For the next two weeks I lived in a haze, waiting for another ultrasound or bleeding to tell me our fate.  I was pregnant, or at least, I was "a little bit pregnant."  I was still queasy, I was still bloated.  But before I could get that ultrasound, I saw a tinge of pink on toilet paper one morning.  I called out sick from work, and went to the ER, where after my blood was drawn I then experienced my second foray into the fucked-upedness of reproduction when it doesn't work properly:

Because you see, even after a lengthy, painful invasive trans-vaginal ultrasound (yes Red states, they hurt), performed by a tech with a confused face and then by a doctor with a grim face, no one could tell what the hell was actually going on in my uterus.  Yes, I was sort of bleeding, however, healthy pregnancies sometimes have that too.  And my HCG (pregnancy hormone count) was super high.  And what's that there on the ultrasound image, is that two gestational sacs?  "We don't actually know what's going on with you," said the nurse, with some grisly fascination.  But where are the heartbeats?  You know you're in trouble when your doc is asking other docs around the hospital, "Hey, I don't quite know what I'm looking at here on this here ultrasound, can you help me out?" I was sent home 5 hours later, with a printout that said "possible missed abortion."  ER doc explained that he thought there were two sacs, however one was very misshapen and neither appeared viable.  Perhaps my body "would take care of it on it's own."

I called Dr. C, asked him to review the ER evaluation and give me an honest view of what would happen.  At this point, I was 10.5 weeks pregnant and had yet to see a heartbeat on an ultrasound or any indication that what I was carrying was alive.  "Well, it probably isn't viable.  I would say more than probably."  And with that I made my decision to end the torture. Fuck this insanity, I wanted a D&C and I wanted it as soon as possible.

Struck by lightening.

When you are trying to bring a baby into the world, and things go awry in a rare and unusual fashion, doctors sometimes like to say you've been struck by lightening.  My first OB used those words. I have spoken with other women online whose pitfalls in baby-making led to their hearing that poetic turn of phrase out of the mouths of their doctors.  My turns of phrase are not quite as poetic. 

But you see, it's not an apt comparison, because not everyone will actually survive a lightening strike.  If I've learned anything in my reproductive "misadventures," it's that the women who suffer very real physical and emotional effects of miscarriage and infertility - particularly the rare and unusual kinds - are SURVIVORS in the truest sense of the word. 

This blog is my attempt to capture my rare and unusual experiences in baby-making in prose, and perhaps find some meaning in them.  Or at least put them into words so that I don't lose my mind.  Maybe I will be a beacon out there for another lost soul dealing with similar experiences.  Maybe I'll have some useful tidbits information for the woman yawning on Dr. Google at 2am.  Maybe my thoughts will resonate with a woman who is searching the interwebs for another foul-mouthed voice in the wilderness she can relate to.  Because I have been struck by lightening.  More than once.  Statistically speaking, even as a woman in her late thirties, I am a walking example of how when things go wrong in the world of fertility, they can go REALLY wrong. 

But while I am not a religious woman, I also count my blessings.  Unlike many of the women I have met dealing with the world of reproductive disasters, the forces of the universe were awesome enough to allow me to bring a child into the world.  An amazing, stunning, bright and healthy daughter.  My niblet. 

This is the blog of a chick who has survived who wants just one more.