Monday, June 30, 2014

weak-kneed.



For the past month, my life has been consumed with balancing a demanding day-job with reproductive endocrinology.  The emotional pendulum has swung in a bad direction for many weeks, leaving me feeling weighed down by the stress of my work-that-pays-the-bills and downright suffocated by the very bad news I keep receiving from REs.  Every day I have carried the hope that I would not allow all of this to crush me, and as far as basic hopes go, I have done okay, I suppose.  I sleep.  I eat.  I mother my niblet. I hug my husband.  I cook our dinners.  But honestly I have had little joy.

But you know the way some people's knees predict the weather?  Well, this weekend, it was my creaky kneecap that predicted a way forward. I need to heal. I need to dance again. 

It should come as no surprise that I haven't had any time to either take or teach dance classes in the months following my last miscarriage.  Making matters worse, my left knee is a mess, with one kneecap looking pretty off-kilter to the naked eye.  When I was in NYC a few weeks ago, I actually took a ballet class and was completely hobbled after the barre  Balletophiles may know what I am talking about when I say that there's a point in every class when some of the, umm, ladies of a certain age start to bow out of the class.  In what was the ultimate crush to my ego I had to bow out with them, as I was unable to execute the pirrouettes and jumps that I love. Oh sure, I can walk, and have taken up swimming many laps at the pool to get workouts in, but that's not good enough, I need to MOVE.  You may recall that after my first miscarriage, I became a licensed zumba instructor because it gave me so much joy.  I also heaped on ballet classes that I love.  Not to put too fine a new-agey point on it, but dance is my bliss. 

So this weekend, when I woke up in the morning with knee pain after doing nothing I realized I have to get back into physical therapy.  I have to heal some very real physical issues that are preventing me from dancing.  Embarking on a treatment plan will certainly take time and energy away from acupuncture and all of the other appointments I have crammed into my life to save my ovaries.  But hey there universe, I'm writing to say I hear the wake-up call  Loud and clear.


Friday, June 27, 2014

We pause for a moment of hilarity

It's like she has a camera in my fucking house.

http://www.youtube.com/watch?v=XmvYVY3i0Zo   

Wednesday, June 25, 2014

exactly how much worse could that have gone, well, gee I don't know.

Oh. My. God. This is aproaching David and Goliath. Sisiphus pushing a fucking rock.  Little engine that can't. I am feeling more and more doomed by the second.

So, that hinky fallopian tube we discovered on the HSG?  Yeah, nice to get such a fleshed out explanation on that Dr. K.  Not.  It turns out there could be fucking scar tissue on it. Based on the image I saw, the dye flushed through my uterus was stuck in one tube, though there was some space for it to come out.  Dr. B recommends removing the tube entirely because IF there is scar tissue it could cause fluid to pool in my uterus and impede implantation, like 50% of the time.  Or even better, jack up my percentages of an ectopic pregnancy to 10%.

This means that even if I had one million dollars to spend on donor eggs (more on that later), without surgery the IVF could truly fail, despite the "beautiful uterus" Dr Cuddles used to wax rhapsodic about.  Smack my fucking head.  But wait! Surgery (which would have to be laparoscopic because god forbid anything be easy) could cause more scarring to form, because ya'll, according to Dr. Genius I appear to be prone to scarring.

You know, I steeled myself to enter into this consult fully expecting a cloud of doom about my FSH.  Well, sure my FSH is elevated and my fertility will start to decline fast, but this deeper explanation about my fallopian tube honestly sent me over the edge.

I am so fucking tired.  Ridiculously tired.  Since our cray cray idea of giving Niblet a sibling began, I have experienced FIVE surgeries, THREE miscarriages and COUNTLESS invasive, painful tests.  I have donated somewhere along the lines of hundreds of vials of blood towards the endeavor.And I have nothing to show for it but heartache.

And the donor egg pitch, oh wow, don't get me started on my ability to choose eggs from women who are interested in the arts or sports.  All for a starting price of $14,000 a cycle (none of which would be covered by insurance).  It made my head spin.

I feel incredibly unsettled right now -  and yet, I also have a really clear visualization of my next steps.  I have to get a second opinion.  I have to request all of my medical records, including the HSG slides from this clinic.  And with those records I have to run - not walk - to a Dr who treats higher-fsh patients without pitching the virtues of carefully screened egg donors.  Egg donation can be on the table years from now, assuming my uterus doesn't further deteriorate, but my insurance covers one more IUI and three cycles of IVF, and meds up to 90% all using my own eggs.  I have to see what an RE who deals with cases like mine would say, particularly about the need for more surgery. 'Cause I've had a ton of problems reproductively, but implantation has never been one of them.  Miscarriage due to chromosomal problems has.  Do I hedge my bets on this one?

My AMH was never retested because according to Dr B that number doesn't fluctuate as wildly as FSH.  My AMH is currently about .60.  Low, definitely.  But not undetectable.  There are still eggs in my ovaries dammit, and I am determined to find one of the good ones.

Tuesday, June 24, 2014

home

I have spent the past few days in NYC with Niblet, trying to rest and re-charge.  Unfortunately, the best laid plans, yada yada.  I spent far too much time frantically researching "HIGH FSH" and trying to identify doctors who might allow me to move in a direction... somewhere.  Anywhere but donor eggs.  My parents and I talked through all sorts of scenarios, including me trying to go through three consecutive cycles here, a destination for the complicated and/or AMA women out there like me, that happens to be in NYC.  But as kind and incredible as they are, the conversation ultimately left me more stressed out (sadly, all of my conversations with my parents about RPL eventually leave me more stressed out, well-meaning as they are).

When I finally returned home on Sunday I realized I was a wreck.  Husband and I had a conversation about the toll this has taken on me, him, Niblet.  How we have been in this cycle of pregnancy and misery for over two years.  Yes, I should keep pressing on, but given that I am already the bread-winner of our household in a demanding full-time job,  I shouldn't drive myself nuts by trying to make something like cycling out-of-state work.  Yes, it works for some women - and I extend mad props to those women - but I am not one of them. I need my home. 


Tomorrow will be a visit to the kindly Dr. B, something that I hope provides me some "closure" with this clinic.  I have a bajillion questions for her too, including, "Can clomid cycles spike up your FSH?" and "Exactly what IS wrong with my tube, as per Dr. K and my recent HSG?"  I have preemptively scheduled an appointment with my acupuncturist later that evening to decompress.

After that?  Well, I'm not quite sure.  There is a doc in town (in the same medical complex as Dr Cuddles, it turns out) who has something of a reputation for taking the sad-sack-high-fsh-ama cases like mine.  Husband and I agree, he's worth a shot.  I dismissed his clinic earlier due to low success rate stats for my age group -but seeing as I am now among the ranks of the island of misfit toys in fertility-land, I am not in a position to care now, am I.


Ahhh, the joys of baby-making when the task is placed in the hands of the emotionally traumatized. 





Tuesday, June 17, 2014

And then the bottom falls out

My IUI has been cancelled.  Future IVF cycles have been cancelled.

Long story short:  My Day 3 FSH jumped from 8.5 in November to 18.5 today.  My clinic will no longer work with me as I am likely a "poor responder" to drugs with Diminished Ovarian Reserve.  (They have to keep their stats up after all).  The only option I am being instructed to consider is the Donor Egg option.  But without a lottery win of thousands of dollars, this is a pretty meaningless option for me.  I simply don't have the tens of thousands of dollars it would cost.

I am pretty stunned, shocked, traumatized....you can insert the awful adverb.  I went from skipping out of the office this morning with a not-horrible Antral Follicle Count for my age of 9, to this mind-blowingly awful news. 

I've survived three miscarriages - including a partial molar pregnancy - and Asherman's Syndrome to find myself here.

Game over?

Friday, June 13, 2014

Forward

I am not pregnant this month.  While not jumping for joy over this development, it's ultimately not going to send me into fits of tears.  I am instead trying to view this month through the prism of opportunity: an extra month to jack up my vitamin D intake, not to mention the disgusting new prenatals I now take (with the non-synthetic version of folate), the Ubiquinol, and the what Niblet calls the daily morning  "make a baby smoothie."

I have no idea when my period will come, but I *really* would love an appearance before wednesday.  That day I am traveling with a very excited Niblet to see my parents.  As you can imagine, we can't sacrifice the trip, IUI pressure or not.  But the sooner I can get an IUI rolling this month, the better.  So now comes the point in the cycle where I say, "All right universe, I am not pregnant.  Let's start this over asap, mmmokay?"

I am also seeing that we all need to move forward quickly in my house, and learn one way or another whether this quest is just doomed.  This morning, Niblet - who has an array of imaginary siblings (Aurora, Marina and Diego, in case you were wondering) - tore my heart in half when she said the following while munching on her pancake: "(Sigh) Mommy, I am tired of my imaginary sisters and brothers.  I really want a real one."

I hear you kid.  God, how I hear you.

Sunday, June 8, 2014

Mom

I am an only child.

When my parents married, they were young - and poor.  I am not using the word for effect, it was just a reality.  My dad worked two jobs and went to night school.  My mom was a fledgling public school teacher in a pretty rough neighborhood.  They lived in a tiny apartment in Brooklyn NY long before yuppies invaded the borough and created $6,000/month rents.  And hell, when I think about it, the neighborhood they lived in as newlyweds still has yet to really see gentrification.
 
When I came around, they moved into an apartment with a tiny room off the kitchen to serve as a nursery.  My mom quit her day job.  As I got older I learned that money was really tight, but this is a woman who keenly understands how to budget.  My childhood was in so many ways idyllic.  My mom loved being home with me.  A former photography student, there are countless pictures of me at the park, at a public pool, all smiles and high on life.  I played with other children, but wasn't really aware of the fact that families had more than one child.  It's pretty common in NYC given the living space constraints, larger families are looked upon as more of a curiosity.

For a bunch of reasons I won't share on this blog, when I turned 5, we ended up in a pretty precarious situation, one that left us virtually homeless.  My mom and dad scrambled to find us a new place to live, one away from Brooklyn, ideally a neighborhood with good schools and lots of parks. It was summertime, and I was supposed to start kindergarten.  My parents were pretty much dangling in the wind as far as family was concerned.  None of my extended family would help them out, despite the fact that I was a young child and surely you can find a way to help out a young couple with a kid, right?  Our little trio spent a number of weeks living out of an old Buick LeSabre, spending our nights in motel rooms along the Jersey turnpike, and on the living room floor of someone my Dad knew at his work, while she was away on a trip.  Dad was working full time and hunting down leads for apartments.

The pictures of me during this period are remarkable.  I am smiling, beautifully-dressed, strolling through parks, picking flowers.  An older me years later thought these pictures captured something magical.

That magic is my mother.  A woman who was literally born in the ashes of her ancestors, in a nazi concentration camp turned DP camp called Bergen-Belsen.  A woman whose mother never showed her any love or affection.  A woman who is today completely estranged from her blood relatives, and just trust me when I say you would be too if you went through the ringer she's been through.

I do not know how my parents did it, but through sheer will and force, they found a one-bedroom apartment in an amazing neighborhood in the Bronx, just a few weeks before the school year started.  One with the good schools and parks and safety they wouldn't settle for less on.  I remember that they gave me the bedroom, so that I could have a spot filled with toys, while they made a bedroom for themselves behind a chinese screen they put up in the living room.  Once I was enrolled in school my mom returned to teaching, mostly as a sub - in better neighborhood schools - and eventually they were able to move us into a two-bedroom apartment.

While I never knew it at the time, it was around this point, I was maybe 8 years old, that my mom wanted to have another baby. We had more space, we had more money, and while my parents didn't ever breathe easily when it came to money, we were far from the temporary homelessness I once knew.  But fear prevailed.  What if my dad ever got sick, lost his job?  What if they needed the help of non-existent family?  how would they continue to give me the many things that were supporting my creative pursuits, the ballet lessons (I was apparently kinda gifted), the piano lessons (I was kinda gifted there too), the summer camp?

Those what-ifs are the primary reason I have no siblings.

I want to be clear now.  I never longed for a sister or brother the way Niblet does. Hell, the only thing I would have ever even remotely expressed wanting was a big brother to protect me from any kids who teased me (I was kind of a an artsy kid, so of course, "weird") and that would have been impossible.  I also keenly understood that many of the amazing opportunities I had as a kid were the result of my parents having a little financial wiggle-room with an only.

But years later as I matured, my parents both became pretty vocal. I was the best thing they ever did.  They regretted not having another kid.  They loved raising me so much that they wanted the opportunity to do it twice.  My Dad believes that his fears about money took something very real away from my Mom.  This had nothing to do with creating "siblings" per se, as both of my parents have siblings that they have no relationship with.  But they were a couple who were completely hands on in raising me, they were good at it, they loved it, and if anyone should have another child, it should have been them.

Both of my parents have struggled with my recurrent pregnancy loss.  They can't relate to the unique horror that it is (who can?)  They sometimes question my seemingly rational decision at the time to wait until Niblet was three to start trying for a second.  But they also recognize I had no way of knowing at age 38 that my fertility would take such a steep nosedive. And if nothing else, they recognize that it is just awful for Niblet to experience a mother in recurrent grief. A mother who gets poked and prodded on a regular basis by REs, a mother who flies to Boston for surgery.  Not surprisingly, Niblet is a huge portion of their lives.  Hell, they moved to an apartment in my city (which they hate) for a year to help raise her after my maternity leave ended.  I can't imagine her life without them.

Last week my Mom  - who is often dismissive of western medicine and big pharma - told me the following:  I should pursue IVF because it is my best chance at my age to bring a baby into the world.  And I shouldn't do it "half-assed" (her words, the apple doesn't fall far from the tree you see).  If I am going to take this journey I need to do it with PGS because I clearly have some "crappy eggs."  And she will write me a check for the PGS.  And she understands it could fail, but still, we have to try it because I can't live my life with any regrets.  And I can't look back at Niblet a few years from now, and wonder "what if I had attempted IVF with PGS, would you have another miracle to love?"  What if?

Thursday, June 5, 2014

answers in the sunshine

So this was going to be a ranty post about how my new doctor didn't initially test me for the MTHFR mutation.  What is that you ask?  Well, the short answer is it's a genetic mutation that comes in many varieties.  It has been linked to  everything from clotting disorders to the body's inability to process folate.  REs are completely divided on whether MTHFR causes miscarriages.  Mine doesn't believe that there's a link but is willing to humor me, which I greatly appreciate.  There are some theories that some women carrying the mutation aren't processing folic acid in its synthetic form (which is the kind found in most prenatal vitamins).  Folate plays a large role in chromosomal development and neural tube defects.

When I was pregnant with Niblet I had ridiculous cravings for sugared cereals.  I'm talking cocoa pebbles and apple jacks.  I'm not proud.  It was insane, I think I ate something like 3-4 bowls of cereal a day for at least four months in a row.  I remember my brother-in-law once coming over and just looking on dumbstruck at me pouring a quarter of a box of cookie crisp into a giant bowl.  Looking back on it, my body was likely craving the folic acid that all kids' cereals are fortified with.  And who wouldn't want to dig into a bowl of this?


These days, my morning smoothies have ensured that I am getting far better levels of natural folate in my system.  I have also switched my prenatal vitamin to one that incorporates the non-sythentic version.  While I was miffed that I still had to advocate for this blood test after already having over 20 vials of blood pulled from me, I was more floored by the following information provided to me by my nurse last night:

I am Vitamin D deficient.  At first we thought my blood level was completely devoid of Vitamin D (thanks for the difficult to read fax-copy of labs Quest Diagnostics).  In fact my level is 24.  Normal is 30-100, and for those trying to procreate, 60-80 is the level you want. 

Here's what I want to know: Why didn't Dr. Cuddles test me for this simple but important piece of information?  See for yourself, a quick google search turns up hundreds of hits about the link between Vitamin D and miscarriage.  There's even a link between Vitamin D and AMH.  It's baffling to me.  I spent a good few hours angry about this seemingly basic failure, but I am past it now.  What's done is done.  I don't believe that Vitamin D is a magic bullet, but I  do feel sort of confident that it will only help my egg quality.  I plan on incorporating daily 20 minute walks sans sunblock on my legs and arms.

There's an irony here - I am downright religious about sunblock, which pays off in terms of having a barrage of "wow you look great for your age" comments throughout the week.  But there's this specific study showing the link between Vitamin D and telomeres, the actual "arms" of chromosomes (telemore length is crucial to chromosomal health).  Yes, my skin is unlined, even alabaster. But I think that three chromosomally abnormal losses points to an internal problem that maybe could be improved.







Wednesday, June 4, 2014

Another two-week wait

Ahhh this past week has felt like a month.  I am so happy to learn that my fears and anxieties over a bunch of medical procedures far exceeded the actual pain of those procedures:

HSG:  As reported last week, no picnic, but absolutely tolerable.

Mammogram (because I am elderly in the medical world):  Let me say that I built this one up to pain of epic proportion.  "Small breasted women experience more pain" (says many a chick musing on the interwebs).  "Dense breasts make them painful."  I don't think mine are particularly dense....but despite regularly doing self-exams, I'm kinda unsure.  And my mother reports extremely dense breasts, so who knows?  Well, carrying something close to a B- on my chest, I was worried.  But perhaps I had the gentlest radiology tech.  She certainly was the most calming.  It was no picnic, but again, it was tolerable and I was practically skipping out of there

22 Vials of Blood:  Meh.

I am not writing any of this to suggest that the women who experience unbearable pain from any of this are pathetic wimps.  Hardly.  More to underscore that it's a really nice and calming feeling to get through all of these diagnostic tests without feeling the need to curl up into fetal position and cry.

Husband rose to the occassion in the late-afternoon hours after the HSG and the morning after.  (YES I WENT THERE).  I was instructed to wait 24 hours after the HSG, but peed on a stick when I got home from work, and ended up waiting only 10.  Infections be damned!  He's getting quite adept at sex on demand.  I really love this guy.

I have few hopes up right now. I don't believe that our timing was quite optimal because I like to get a few shots in before I ovulate, and I am fairly certain I ovulated the day of or after the HSG.  Nevertheless, I sit here in my two-week wait, somewhere around 4DPO.  The sky is blue.  No one is ramming a catheter into my cervix, at least for the next few weeks.  It's all good.