Monday, February 23, 2015

"When do you stop"

When do you stop

This was a text I received from one of the (single) handful of friends I know in real life (IRL) who knows about my pregnancies, the morning I informed her that this last one is looking like it's headed towards miscarriage.

I don't think any of my readers  - particularly those of you who are struggling with RPL - would be shocked as to why this text is so profoundly upsetting to me, particularly as I sit here trying to process another loss.

First of all, there's the word "stop" in there.  That's a verb.  It suggests I am in control, which couldn't be farther from the truth.  Most of my readers know that my husband and I haven't exactly been trying very hard to achieve pregnancy.  I don't use OPKS (which put me at something of a disadvantage for the dating purposes of this current pregnancy).  Hell, we were on a break as long ago as last summer, when we conceived Celine. 

You all also know that I have been working hard with the help of my therapist to imagine my life with only Niblet.  I think I have been doing a fucking stellar job of it if you ask me.  We're cleaning out our office to be a nice office, as opposed to a nursery.  We finally brought a cat into our home, who rocks my world and sleeps with me.  My husband is now in a new job and we're adjusting our lives accordingly.  I am not lying when I say that I have managed to find joy again in some of my days post tfmr.

That word STOP makes my blood burn.  It suggests that I am not doing enough to prevent my pregnancies.  It implies that maybe I should get my tubes tied, or dear husband should get a vastectomy.  That somehow we are complicit actors in this hand of recurrent loss that we've been dealt.  Maybe I'm just a tad irrational right now given my current condition, but I am furious at the suggestion that I am somehow to blame for the circumstances I find myself in.  

This is the life of someone who lives RPL.  We are so connected to one another through the internet, that we sometimes forget the average person walking down the street will never begin to comprehend it.  

The text itself also magically highlights my innermost long-term thinking in all of this.  Because, the truth is, I can't just fucking turn off my desire for a baby like a light switch.  Sure, I can be realistic, and I can be guarded, but is it too much for me to have any shreds of hope?  That maybe, just maybe, since I conceived two genetically normal babies, I can do it again?  That maybe, just maybe, I can hit the lucky roll of the genetic dice as per the suggestion of my RE? 

The general saying of RPL survivors is that you keep trying until the risk of harm from losses is greater than the potential for a good outcome.  There's no mathematical formula for this, it's very personal, and it could change by the minute.  But I know deep in my bones, as I contemplate my next steps -  for this pregnancy and beyond - that this blog isn't over.

A Twisted Groundhog Day: Preparing to let go again

I am measuring behind.  Unlike my new RE, I don't need to nail down the exact date that I ovulated to know where this is headed, as I stare down my latest miscarriage.  Sure Dr. K, I will come back into your office on Monday to get the grim confirmation but I won't waste much needed energy on optimism.  I have a desk at my office loaded with work to do this week, and a zumba class to teach and a kid to shuttle to and from school.  And relentlessly cheerful in-laws visiting this Friday.  False hopes will suck the life out of me.

This will make my fifth consecutive loss, sixth if I choose to count that likely chemical pregnancy that rang in the new year.  And I won't be surprised if it happens again this calendar year. (Note, I can now say with discomforting honesty that I was pregnant a total of three-four times at age 40 alone).

Oh well, it's intrauterine, and won't likely need a D&C.

It's been very kind of all of you readers to try to lift my spirits this past week.  Sadly, I was completely braced for this.  Just trust me when I say I always know.

I should note for the record, that this latest entry into the book of grim statistics doesn't negate any of the truth or sentiment of my last blogpost/letter to former doctors. Those guys still suck.

Sunday, February 22, 2015

Dear Doctor(s)

To the Team of Doctors at "Babies Guaranteed":

My acupuncturist suggested I might write you a letter to advise you on my thoughts of the quality of your care.  Lawyer that I am, I'm going to start with a lengthy draft and then eventually edit down.  This whole letter will probably be all of five sentences if I ever send it to you.  So, here we go with the first draft!

I was an intermittent patient at your clinic (factory), beginning when I was desperate to have my Asherman's Syndrome diagnosed.  I was an unfortunate soul who never had her period return, even many months after a D&C for a missed miscarriage (which turned out to be a partial molar pregnancy).  Many hormone tests and a painful provera prescription later, I found my way to you on the advice of the OB who performed the D&C and told me that Asherman's Syndrome "simply doesn't happen from a single D&C."

Dr. Y, you may remember me as a cute young thang, I didn't look any of my 38 years, I was the lawyer who you advised to "stop reading things on the internet"?  If that doesn't jog your memory, I am the chick who learned my cervix was sealed shut like a brick wall during an HSG performed by your Physican's Assistant (a very nice lady by the way, give her a raise).  And then I had my scarring removed by a truly great RE in Boston (yes, flying to Boston felt like a much better decision than having you treat me, given that you told me cases of Asherman's hardly ever existed). Remember when I returned to you for a post-surgical follow-up and you unnecessarily dilated my cervix?  Oh wait, I am also recalling you panicked that I was pregnant afterwards, that was a nice touch (as a lawyer who in fact reads the internet, and follows the protocols of my doctors,  I was pretty careful to not get pregnant while waiting the required monitoring period for cancer after a partial molar pregnancy).

With all of this highly competent treatment  I ran from you like the wind and hoped to never return.  And it was a nice reprieve..... until two more miscarriages.  Then I realized that maybe I should return to your clinic (factory) because you're one of  the only games in town that offers IVF with PGS.  So back I went, two years later, only this time to see Dr. B on the advice of a friend (who had her own ridiculously awful experience with Dr. Y).

Dr. B your soft-spoken demeanor is kind and gentle, though that belies your ability to push a hard-sell for the expensive donor egg.  Surely you sold cars - perhaps jaguars? - in a past life.  Still, it was nice of you to nevertheless move me forward in the process and see if perhaps my sad-sack ovaries were worth a shot at the very expensive (but insurance covered) attempt at IVF.

And that's when I got to really interact with you Dr. K.  Wow, I must be grandiose in my description of you:  You are quite the asshole.  You cracked some mighty fine jokes during my HSG.  You even later sent me into a state of panic over a misdiagnosed scarred fallopian tube (I later learned from another doctor that you didn't ram that catheter in me all that well).  But I digress.  I know that it isn't a pleasant task, to call a woman at her office in the middle of a work day in order to tell her that she might as well be in menopause because her FSH skyrocketed over 18.  I mean, hell, I imagine women cry for hours when you call them.

But Dr. K, I must tell you this:  the way in which you conveyed terrible information to me (high FSH) was truly, devastatingly harmful.  Because you then told me that my high FSH was likely responsible for my earlier miscarriages.  Even though my FSH was under 10 when I had those miscarriages.  And only later did I learn that high FSH isn't instructive in the field of reproductive endocrinology at all, except for the purposes of ascertaining a good responder for IVF.

So in other words, you told me I could no longer be a patient of your clinic unless I was to consider donor egg IVF, because with my own eggs, I was a poor candidate.

But then you had to go farther.  You had to tell me, I quote, "Odds are high I will never get pregnant and carry a healthy baby with my own eggs."

I am now 40 (soon to turn 41 in a few weeks).  I've taken a lot of hits.  People have said mean things to me.  I work in a politically loaded field, I am used to it.  But never in my life has anyone said anything so destructive to me.  That happened to be a load of crap, based on the opinion of the Director of Fertility at one of our nation's largest teaching hospitals.

I would like to tell you about my daughter, Celine.  She is no longer with us.  But she was a healthy baby.  One of my (gasp) healthy eggs met my husband's healthy sperm (and if you'd check out his lack of health habits, trust me you'd gasp for reals).  And we created a healthy baby.  Who was sadly struck by lightening. (Well, actually I think she was struck by some fucked up shit resulting from my MTHFR mutation that y'all never even wanted to test me for, but I digress again).

So, anywho, here I am again.  Pregnant, possibly for the second time after a tfmr.  Under the care of a new RE, one who thinks I have had "shitty luck"  (her words, by the way).

I want you all to know that I have panic atttacks.   I'm fairly sure I had one ten minutes ago. In fact, I have a nice case of PTSD from my experiences.  I generally think every pregnancy I have is doomed (and will continue to have, because, well, I'm fairly sure that you also misdiagnosed my early menopause).  Your words haunt me, despite the fact that I know they are untrue.  In fact, your words might have been a tad unethical.

I am writing you this letter because I want  you to think about the care that you give to women who are at their saddest, their most desperate.  In fact the women that see you are emptying their life savings to have a chance at the miracles you perform.  I know that there have been thousands of patients you have helped to realize their dreams of motherhood, and that is undeniably wonderful.

But please consider your approach.  If you wish to cherry-pick women to offer services to, so that you can continue to boast high success rates, that is your right.  But consider the ramifications of your words and actions to those of us who are trickier patients to manage.  Those of us with deeper issues, such as a genetic predisposition to miscarriage.  You don't want to bother with us?  Fine.  But don't destroy our hopes and dreams.  Don't convince women like me, who happen to find themselves pregnant all the fucking time, that we are doomed to a future as a grim statistic, based on a number produced during a blood draw, that only apparently matters if your patient is doing IVF.

Thursday, February 19, 2015

What would make me feel better right now?

I'll tell ya.  I would feel so much better about this pregnancy if I were throwing up.

Yup, you read that right.  I get the slightest wave of maybe sorta kinda nausea, and then it's gone and then I am bracing myself for another miscarriage.

My two successful pregnancies (and I count Celine among the successes with Niblet, because she was genetically healthy) I was pretty fucking sick.  I feel like I should be sick right now if this were going well. 

I would sleep much better at night if I was feeling wretched.  And this tidbit of fucked-up-edness is exactly why pregnancy is so traumatic for me.

Just so you know, my acupuncturist worked valiantly to ease this worry.  My "pregnancy pulse" she said, sent "shivers down her spine" because it was so strong.  Perhaps, she mused, I am carrying a boy.

I miss the days when I was normal.  When I could get two lines on a stick, then get doubling betas, and start to believe that maybe, just maybe, it would all progress with me developing a giant belly and ultimately holding a baby in my arms.  But I'm not normal and nothing in my history will allow me to fool myself into thinking I am. 

So I wait.

Tuesday, February 17, 2015

When signs themselves are trusted miracles

When I learned of Celine's diagnosis I spent a good week alternately crying and reading.  A researcher by trade I read every tract I could get my hand on, from information from children's hospitals to peer reviewed journal articles.  I also spent a few days as a member of a facebook page of mothers who carried their babies to term. 

The results of these studies were murky at best.  Some babies survived, just as many died.  Some did not live far past childbirth.  Often the outcome hinged on very individualized pieces of information that wouldn't even become apparent until they were full-term or born.  Were their hearts also affected?  Their lungs?  These things would impact the outcomes.  Every one of these babies required unimaginable painful medical interventions and surgeries, and some required more "follow-up" interventions (ie. trach and feeding tubes) than others.  A "good" outcome for many could be a year in the NICU and then being sent home to a NICU recreated in the living room.

In the midst of all of this information I went to work one day, and went into the office of one of our executive secretaries.  A woman who had offered me her shoulder through three miscarriages.  And I cried and cried and cried some more.  And told her the bald facts about our diagnosis, and how my daughter's life - and suffering - was in my hands.  She  - I'll call her "L" - is a church-going Christian.  And I - being rather godless - felt crushed by the weight of what I was asked to do.  Sure, I knew  instinctively what I had to do for my entire family - for Niblet, for my husband, and most of all for my most-wanted baby.  But was I wrong?  The doctors made clear to me that there would never be enough information to fully assess the gravity of what I was dealing with. They could only tell me it was very very grave and any "choice" I made would be supported by the medical community.

But that day L offered me some words that changed my worldview and saved my life.  In sum, she told me that perhaps God had intended for me to see the gravity of that situation so early on.  That it was in fact a blessing to learn the severity of my baby's health problems at 12 weeks, rather than farther along.  That the science that brought me this far was itself was a miracle.  And that she would make the same choice as I.  I went home from work that day with a changed perspective.  No, I did not find God.  But it struck me as remarkable that a woman so driven by faith could reach the same outcome, the same conclusion as I did.  It struck me that miracles weren't necessarily what we imagined them to be.

There is actually another piece to this story, that will remain unwritten here, because it isn't my story to tell.  But I will say that I connected with another woman that week, who I shall call "T". She was another voice who offered me her own thoughts and her own crazy experiences.  We connected on the internet just a day before I found myself sitting at L's desk.  For me, finding T was like finding a beacon in the cold dark wilderness.  I was no longer isolated.   Individually, both women provided comfort and empathy and rational conversation and safe spaces.  But somehow, the story T specifically had to tell me, when  merged with L's words, became two parts to a whole new parable.  All I can say is that the two perspectives were symbiotic.  Together, their words combined to provide both guidance and validation for what I ultimately had to do.

These two women who never met formed the tag team for my psyche.  And I cannot believe it is coincidence that when I needed them both, these women, from vastly different walks of life on the opposite sides of the US, could connect with me in tandem and provide me with comfort.  And signs that I would survive.

The universe is mysterious.  Miracles may not be what we imagine them to be, but I absolutely believe they are real.

Monday, February 16, 2015

We live to see another day

My betas doubled in 48 hours. 

I have an ultrasound scan scheduled for early next week, when I should be somewhere in the sixth week.  My ambitious RE, Dr. K, apparently hopes to see a heartbeat on the screen, though she has assured me that I will have a follow-up scan a few days later if we don't see one. 

This will be about as much fun as a root canal (which I thankfully, have never experienced, but from everything my mother tells me, it's an apt comparison).  Speaking of mothers, I haven't told mine yet about this foray into hormone land. 

If there was an award for getting through the day whilst attempting to forget your own pregnancy, I might just win.  I spent much of the weekend focused on something that is actually in my control: getting my house clean. 

In case anyone is wondering, I have no gut feelings at all about this that are positive.  Statistically speaking, this pregnancy should fail, like so many of the others.  True, I am extremely tired, but I'm not really queasy.   Though if I recall correctly, I didn't really feel the effects of my pregnancy with Celine until I was somewhere in my fifth week along.  So on those moments when I can't delude myself into avoiding the topic, I do worry that the lack of morning sickness is a sign of things to come. 

Time will tell, right?

Friday, February 13, 2015

What you don't know hopefully won't kill you.

So, my first betas were interesting but as anyone who has been in my shoes knows are not terribly helpful in the long-term.  I learned that at 15 or 16 days past ovulation, I had an hcg level of 371.  That's actually pretty decent.  Dr. K said she was hoping to see a level between 50 and 100.  My progesterone was a solid 40 (albeit with supplementation), also good.

I had repeat labs performed yesterday morning.  For the uninitiated, it's important for that number to double in 48 hours.

Now some people quibble and say that it should rise 60% in 48 hours, or it could double in as many as 72 hours and still be a viable pregnancy.  But I am of the "don't kid yourself school" of betas.  In my experience, when my hcg level rises well, I have a pregnancy that is progressing.  When it doesn't, I miscarry.  None of this "up to 72 hour doubling" business for me.  In fact, my blood pressure rises just a little when I read women on the boards setting themselves up for heartache.  Yes, you could beat the odds, you could be a member of the small percentage of women carrying healthy pregnancies despite poorly rising hcg levels.  More likely though, your pregnancy is going to have a poor outcome.

I know that last sentence might sound cold, sound cruel.  But 5 consecutive pregnancies has taught me the value of cold, hard pragmatism.

I have been stuck in meetings all day, but kept my phone at my side at every second of the day, waiting for this most important call.  And no one called.  And when I finally got out of meetings at 4:15pm, I called my REs office.  And they were closed. Of course they were.

And so here I sit, with no fucking clue whether this pregnancy is doomed before it even gets off the ground.  Typical.

I am going to try to comfort myself with the fact that this point in time my last pregnancy, I hadn't even had blood labs done.  In fact, I was sitting on a beach enjoying my summer vacation.  There's nothing I can do to change the outcome of any of this.  All I can do is take my vitamins and continue to convince myself of a happy future regardless of the outcome of this particular ride on the pregnancy crazy train.

At least I see my therapist tomorrow.

Monday, February 9, 2015


So it's starting.  Getting HCG/progesterone labs today, Wednesday and Friday.  In addition to this being a logistical nightmare because my job kicks my ass, I am starting to feel ill.  I wish I could say with certainty I feel ill because of the surging HCG in my blood, but it's more the usual anxiety and dread of doing this all the fuck over again.  Again.

Technically I am only barely 4 weeks along, maybe 3 + 5?


Friday, February 6, 2015

Riding the crazy train

I'm somewhere around 12 dpo.  My spotting and cramping has ceased and I am getting some pretty notable lines on home pregnancy tests.

Technically speaking, my period is due this weekend.

Assuming it doesn't come, I am planning on calling Dr. K on Monday.  Betas.  Ugh.

On other fronts, check out this look Princess is giving me.  It's like she knows I am about to become mildly insane in the coming days.

Wednesday, February 4, 2015

Glass half full

So, I am spotting.  And a little crampy.  Long-time readers will recall I discussed a similar circumstance way back here in the summer of 2014.

You can't go through life constantly knocked up, without delivering a live baby, without preparing for this possibility that your next pregnancy will end.  If I am having a chemical pregnancy there's no question that it will be a huge bummer.  It will be my 5th (possibly 6th) consecutive loss.

But all is not hopeless if this is a chemical pregnancy.  For one thing, it means that my body may actually be working better than it has in years.  Sure, an early loss stings.  A loss at 8 weeks sucks.  A loss at 12 weeks that your body for some reason hasn't recognized is pain.  A loss in the second trimester is a level of hell that could have been written by Dante.

A chemical pregnancy also means that technically speaking, I am still fertile.  Our parts work.  Something got fertilized.  Maybe I don't need to rush to Boston for a hysteroscopy, which I assure you is nothing like a pleasant day of medical tourism.  Flying in to Logan, rushing to the hospital, having a scope rammed through your cervix and perhaps the joy of -- eeek -- microscissors cutting away scar tissue, and then rushing your crampy-assed self back to Logan is so far removed from a nice jaunt at Faneuil Hall. 

And finally, a chemical pregnancy could also mean that I could be more fertile next cycle.  Maybe I get another chance.

MTHFR mind meets paranoia

You know when you're at the 7-11 in the morning and you're totally craving one of those breakfast sandwiches on a croissant with egg and cheese, but the bread is fortified with folic acid and you are homozygous with the MTHFR C677T mutation, and folic acid according to some sources is like poison to your body, and you totally wonder whether eating foods fortified with folic acid during your last pregnancy led your baby to develop a painful and frightening birth defect, despite the fact that she was genetically normal, so you walk out of the 7-11 empty handed because your home pregnancy test got a little darker?

And then you get in your car and say what the fuck am I doing, statistically speaking, the odds are high I will totally miscarry.

Tuesday, February 3, 2015

What "been there done that" looks like.

You know when you wake up in the morning and you feel a little funky and you pee on a stick and you get a faintly positive line?  And then you show your husband and he says, "What am I looking at? Oh, yeah, I think I see that.  Yeah.  Okay."  And he pecks you on the cheek and heads off to work and you stare at the stick one more time before going upstairs wake up your daughter to get her dressed for school because you have been here before.  So. Many. Times.

(Disclosure - it is quite possible that I had a chemical pregnancy last month with a similar faintly positive pregnancy test)

I've been very worried that my Asherman's Syndrome has decided to rear its head again, in fact, I was close to scheduling an appointment with Dr. Isaacson in Boston to get my sad little cervix checked out again.  Now I guess I wait.

Sometimes I think my uterus should be like, donated to science.   Because she'll seriously fertilize anything.