This is the post

So, this is the post.  That post.  The post I’ve thought about since I started the blog; the post I’ve been terrified to write since 7:06am yesterday morning.

It’s the post where I tell you I’m pregnant.  Or at least a little pregnant.  Definitely closer to pregnant than not.

Back in June, on our 7th wedding anniversary, I typed out a few lines on my iPad while hiding the tears and shielding the screen from the colleagues I was spending the day with at a mandatory work retreat.  My first injectable cycle had failed.  That post was easy.  A few simple and familiar words – I’m not pregnant.  Additional complex and familiar emotions – grief, anger, despair.  More comforting and familiar responses – emails, flowers, gifts, cards, phone calls, shared tears, and virtual embraces from across the globe.

This post isn’t simple.  This post isn’t familiar.  This post,  more than any other, will fail to convey what I’m thinking and feeling.  To be able to convey those messages, I’d have to have a grip on my own emotions in the first place.  That’s something I definitely don’t have as I mentally flit like a humming bird from exhaustion to ecstasy and worry to wonderment.

I’m thrilled.  I can’t stop my mind from the inevitable.  I’ve calculated my due date (1 day shy of our 8th wedding anniversary), I’ve started looking up reviews of perinatologists and OB/GYNs, I’ve held the Mr.’s hand as I’ve said the words, “I’m pregnant.”

I’m cautious.  Having experienced this moment before – October 2011, May 2012, January 2013 – I know how quickly joy can turn to sorrow.  I know how it feels to walk into a maternity ward to terminate an ectopic pregnancy, I know the extreme grief even the briefest of chemical pregnancies can elicit, and I know that a heartbeat and multiple consecutive strong ultrasounds offer no guarantee of a child.  Sometimes this caution manifests in a desire to live each and every second to the fullest – how many times can I chant “I’m pregnant, I’m pregnant, I’m pregnant!” before this pregnancy ends?  Other times, it evokes an uncharacteristic superstitious nature – “You know better than to be calculating due dates this early, you fool!”

I’m ashamed.  I’m embarrassed to have tested this early when so many others have the tenacity to wait for the official word of the blood test.  I’ve been taking home pregnancy tests since the day after my transfer – first to test out the HCG trigger, and then in the hopes of catching a second line returning.  I saw the faintest glimmer of a line return yesterday, and it has darkened some today.  Yet, at only 5 days past a 5 day transfer we’re still in crazy early testing territory.  My official blood test isn’t even until Monday.  Yet, when I saw that faint second line yesterday, I couldn’t hold it in.  I shared it with my long-time IF friends, with Twitter, with Facebook (though, my under my blog persona, not my real one — I’m not that delusional!)

I’m uprooted.  Less than 48 hours since the first flicker of hope entered my heart and I’m already experiencing that familiar identity crisis of the knocked up infertile.  Where do I fit now?  What is this blog for?  Who can I turn to?  How do I comport myself?  Who am I and what am I doing here?  I’ve been pulled out of my old school, the surroundings, teachers, and friends I know are gone, and I’ve not quite matriculated to my new school just yet.  What do I write to the friends back home?  Sunny optimism – “This place is as great as you always thought it would be.  I’m sure you’ll be transferring soon, too!”  Injured honesty – “I’m not that sure I like it here.  I miss you and I’m terrified.  Please let me cry to you.”  The minimal brush-off – “Have a great summer!”

I’m bargaining.  I’m working down my battle-hardened, experiential checklist.  The outcomes for this cycle were negative, miscarriage, or child.  Now we’re on to miscarriage or child.  One line crossed off.  A few more darkening lines, and I’ll tick off the box next to “Not another chemical.”  If we’re blessed enough to have a few normally rising betas I’ll likely strike out (in pencil, though, not pen) “Not a second ectopic.”  If we make it to a heartbeat I’ll check, “Get at least as far as last time.”  And, for any step at which I might falter, I have the memory of the familiar and the knowledge that I’ve survived each one before.  Miscarriages I know, lasting pregnancy I don’t.

But, I’m also pregnant.

For now.

Total fucking breakdowns have their perks

So a (not so) funny thing happened at this morning’s monitoring appointment.  But, since I’ve largely been AWOL lately, let me back up.

We’re in the midst of a Gonal-F injectables IUI cycle.  This, of course, comes on the heels of our most recent failed Gonal-F timed intercourse cycle.  And, in the midst of our decision that we’re finishing out the year with treatments — IUI and then one IVF — and then we’re calling it quits for good with the whole TTC ballgame.  So, to say the pressure is on a little is a bit of an understatement.  After responding decently on low doses of Gonal last cycle (2 follies created in response to 7 days of 75IU and 4 days of 112.5IU), this cycle has been a total mindfuck.  I’ve done 5 days of 75IU and 5 days of 150IU and still have no lead follie(s).  My estrogen is going up and down like a yo-yo and my LH is being predictably unpredictable.

Just to make life more exciting, it seems I’ve suddenly developed strong side effects to either one or both of my current meds (Gonal and Lupron) that I didn’t really have last time around.  Last cycle I had a bit of a headache, this cycle I want to carve my brain out with a mellon baller just to get the pain in my head to quiet for a moment.  Last cycle I felt a wee bit emotional, this cycle I literally go from calm to catastrophe in a matter of seconds.  On Friday, I had what I presume to be my first ever panic attack.  I couldn’t get the lid off of my sharps container, I threw it across the room, and started crying and convulsing uncontrollably.  As I felt my mind leave my body and began to watch myself from outside the hysteria, Mr. But IF dutifully packed me into the car as we started our long drive down to the in-laws for the holiday weekend.  Slowly, everything went numb.  I couldn’t feel my lips, it felt like a million tiny needles were ballet dancing across my skin, I couldn’t catch my breath no matter the effort I put into breathing, and the tears kept flowing.  It was terrifying.  Totally fucking debilitating.  And, the entire time, I was powerless to stop it or to stop the growing panic setting in for dear Mr. But IF.  A little over an hour into our drive I caught my breath, found a teensy bit of mental clarity, and Mr. But IF bought me ice cream.  And, like that, it was over.  But I’ve been clinging to the edge of a cliff ever since.  Not ever the best place to be, but even worse when you have no idea what you’ll find at the bottom.

And, in a nutshell, this was the baggage I brought to my monitoring appointment this morning.  So, when my least favorite NP walked in I braced myself and suppressed the inner grimace that was fighting to come to the fore.  As she went about aggressively probing around in an attempt to find my right ovary, the grimace surfaced.  I’ve had hundreds of trans-vaginal ultrasounds over the years, but never once have I felt as much pain as I felt today.  She pushed, she pulled, she twisted, she angled… she even took the wand out and tried to find it abdominally.  Nothing doing.  So, at the end of it all when I was informed I had two 11mm follies (barely worth measuring) on the left and a completely missing right ovary to show for 10 dutiful days of injecting myself with psychosis-inducing crap, I lost it.  And, by that I mean I totally fucking went bat-shit crazy.

As I’ve explained before, I have issues with my clinic.  Actually, I’ve had issues with both of my clinics.  My first RE – a one-man-show sort of practice – redefines the word arrogance and had an office staff that was so totally inept that they ultimately caused me to leave the clinic in a blaze of curse-laden voicemail messages, canceling my first planned IVF and accepting a job 2 states away in the process.  As awful as that sounds, I’ve been finding myself missing that very same clinic as I’ve endured the trials and tribulations of my new mega-practice.  I had come to view my old RE as your local neighborhood Hallmark franchise.  Yea, they are over-priced, but you keep going back for the nostalgia (I always got a Hallmark Christmas ornament growing up) and the desire to support the familiar group of little old ladies that work there.  The new practice?  It’s Wal-Mart.  Equal measure “Always low prices,” “Why can I never find someone to help me?,” and “I totally know I’m going to leave here wishing I’d gone somewhere else.”

As I commenced the world’s finest showing of shit flipping this morning, I let all my frustrations out.  What started with a simple, “So when do we actually cancel this pointless cycle?  I’m sick of wasting my time and my meds on this train wreck!” became (a likely much less coherent version of) the following:

I’m totally done with your practice and the revolving door of NPs I’m constantly subjected to.  I’m sick of none of you knowing shit about me, ever explaining a damn thing to me, and constantly asking inane questions and offering demoralizing, uninformed, trite advice.  I’m convinced that none of you have ever once looked at my chart and, as long as I keep paying, you’ll keep running me through this conveyor belt until I loose my mind, give up, or die.  And, I don’t even think you care which one of those comes first.

Did I mention I threw a tantrum?  Cause, yea, I did.  And, lest you think that my assertive, often emotional blog voice is the same as my often reserved but skeptical and analytical feet-in-the-stirrups voice, I should probably say I never act like this with my doctors.  I often don’t trust them, but I do acknowledge how totally dependent on them I am for my care and treat them with a level of professionalism and calmness that, quite frankly, they don’t often deserve.  All this is a very long way of saying that what transpired this morning was abnormal.  Really, really out of character.

As my rant continued my formerly least favorite NP transformed before my eyes.  This woman I’ve quietly hated for months due to her rushed and nonchalant approach to my situation, suddenly changed.  I swear her face softened, her voice lost its usual sharp edge, and she physically relaxed as she stopped her mad rush to get out the door and onto probing number 20 of the day.  She turned back around and sat on the stool to talk to me.  And, even more importantly, she started to listen to me.

Through the tears I recalled my history for what felt like the hundredth time.  But this time, she started to hear it.  She opened my chart and started going through it – commenting on what tests I’d done there, what tests I’d done with my old doctor and asking questions about prior diagnostic procedures and the paths that led me to all my diagnoses.  Somewhere along the line I told her that both my emotional stability and my fears of a resurgence of my mild endo were playing into our decision to be done come 2014.  I explained what I’d been thinking but barely able to express even to my husband in the past months.  Namely, that my hallmark endometriosis symptoms (chronic constipation, pain, heavy bleeding, intense menstrual cramps, etc.) appear to be coming back and that has me terrified.  I told her what I remembered from my post-op report with my old RE, the one who had excised my endo in February of 2012, and explained that surely the records the old clinic had sent to them contained more detail than my recovery-room, drug-addled mind could ever recall.  She went into my historical records, found the post-op report, and started to read.  Despite the gigantic three-ring binder I maintain that comprises the whole of my medical history for the past 4 years, I’d never seen the surgical report.  I wasn’t remotely prepared for what came next.

She read it aloud.  I recall phrases like, “right fibria obliterated,” “right ovary encapsulated in adhesions with evidence of torsion,” “cul-de-sac decimated,” “extensive scarring,” “retroverted uterus,” and “bowel affixed to left pelvic side wall.”  I wish I had requested a copy of the report, but I was in the midst of having my world turned upside down.  I still don’t feel like I know which way is up.  You see, my old RE, the same RE I’d been sorely missing these past many months, had simply told me my endo was “quite mild” and posed no cause for concern moving forward.  Following my lap we happily did two clomid cycles (1 BFN and 1 chemical) and it was only our declining patience and his refusal to do injects without IVF that actually prompted us to move down the IVF path this time last year.  He didn’t recommend IVF, he basically said Clomid may work, but if we cared more about getting pregnant quicker than getting pregnant cheaper then IVF would be a good option.  After all, my endo was “so mild,” my tubes “completely clear,” and my prognosis “nothing but positive,” that there was no medical cause for concern.

The report I had read to me this morning – a full 17 months after the surgery that generated it – doesn’t even exist in the same universe as those unfounded, optimistic platitudes I had lobed at me back then.  The NPs jaw started to drop as she formed the words to read them aloud.  When she was done she turned to me and said, “Honey, your entire right tube and ovary are completely shot.  I’m not surprised I couldn’t find your ovary this morning.  I’m afraid your adhesions are back.”  She continued with, “Knowing this, your pregnancy in December was so unlikely.  You must have ovulated on the left and had one stubborn embryo.”  And, finally, she said, “I’m so very, very sorry.  You are right.  Someone should have caught this; someone should have read this before now.  Had we seen this we never would have pursued the treatments we’ve been pursuing.  You need another lap.  And you need IVF.”

In an odd way, it all was kind of comforting.  This is a dance I’ve become so familiar with over the years.  I report my concerns to my doctors, they dismiss me with the lowest common denominator answer, I do my best dutiful patient act and follow their orders, I become increasingly miserable, I reach my breaking point (physically, mentally, or both), I push the issue, and I finally start getting answers.  This is my Hashi’s diagnosis all over again.  Hell, this is the path that led to my initial lap all over again.  In late 2011 I terminated a suspected ectopic, in early 2012 we were blindsided by the news that both of my tubes were blocked.  At my consult after that failed HSG the doctor suggested that it was likely a “false positive” initiated by cramping or “casual debris” and merely suggested another HSG (this time under sedation).  I went home and pondered my options, discovered my aunt had endo (thanks for telling me earlier!), went back to the office, demanded a lap, and found I indeed had (supposedly mild) endo.  Present problem, languish with problem, be ignored, reach breaking point, demand more than simplest answer, find validation in being right, and welcome in new anger and disgust at the fact that you’ve been left languishing for so long.  Rinse.  Repeat.  It’s odd when joy becomes a prevailing emotion in response to repeated discoveries that yet another part of you is broken.

Mr. But IF is furious and quite possibly planning a murderous rampage down to our former home state to “chat” with our former  RE.  It will likely involve a baseball bat, or hammer, or maybe one of my bruiser cousins.  (And, to any law enforcement types reading this, please consult the definition for hyperbole.)  I, on the other hand, feel more hope than I have in a long time.  I’m angry, but I’m angry and armed with answers.  And those answers are more empowering than even Mr. But IF can fully appreciate.  Today someone gave me a window into my fucked up body and acknowledged my pain, confirmed what I thought to be idle worry, and validated our path moving forward.  My anger stems from the fact that, yet again, it was a totally uncharacteristic, unprofessional meltdown of epic proportions that initiated these revelations.  But, as far as the other elements of the story, I’m oddly zen in this moment about it all.  Talk to me in an hour.

So, what’s the plan?  We’ll continue this mindfuck of a doomed IUI cycle because, after the shit these meds have put me through, I’m totally not willing to pull the plug just yet.  I go for another (fifth) follie check Saturday morning.  We’ve scheduled my next laparoscopy for August 20, and we’ll commence our first IVF as soon as I’m recovered from the surgery.  And, with the toll my work has been putting on me lately, I’m almost happy for the lap.  It’ll be a vacation that even my boss can’t talk me out of taking (which has happened to every other vacation day I’ve tried to plan this summer so far).  And, my amazing mother-in-law will come up for the surgery since the hubs will have to work and be unable to drive me to and from.  I really am amazingly blessed in some ways.

The even bigger picture plan moving forward is that I’m going to stop accepting half-assedness (hell, quarter-assedness) on the part of my new clinic.  Every visit I have moving forward will specifically be with my formerly hated, now much respected NP from this morning.  (Apparently, I should have magically known all along that I could “simply” request an NP by name each time I appeared at reception if I wanted to have the same one every time!)  I also have been assured that the doc is always at my disposal whenever/however I need him, and that if anyone ever gives me a hard time or doesn’t treat me with the patience I need and deserve I’m to report it to my new BFF NP.  Fences aren’t totally mended (I mean they did totally fucking practice medical negligence for the past 8 months!), but for once I actually feel like we are moving in a positive direction.  You have no idea how good it felt to hear the NP say to me, “We dropped the ball.  I’m so very sorry for this and you have every right to be furious.  I know it makes none of this feel any better, but I think sometimes we detach ourselves from all that is going on with our patients as a coping mechanism.  I know I do.  It’s hard to remember sometimes when you are doing 20 or 30 or 50 monitoring appointments in a given day, that this appointment is your only appointment and you need us to be there for you 100%.”  The latter part of that paraphrasing does go a long way toward making the “we fucked up” part of the statement a lot more palatable.

Or, maybe the Gonal’s made me soft?  I mean, it’s certainly been adding fluff to my mid-section, so why not my heart as well?

Hello menses, my old friend

Judging by the chunky blood clot and Crinone combo that splatted into the toilet last night with startling velocity, CD1’s arrived.  Between 6pm last night and 8am this morning, I had to make a decision.  As I laid myself down to sleep last night my mind was darting back and forth from decision to decision.  Every option was on the table:

  • Call it quits for good;
  • Take a break, enjoy our summer, and return to birth control until the fall;
  • (Stupidly) try a natural cycle;
  • Just do  more of the same (injects, intercourse, intralipids, etc.);
  • Do the same as before, but add IUI;
  • Say fuck it all and do IVF with local RE; or,
  • Say super fuck it all and do IVF and immune cycle management with my RI.

I’m not lying when I say that I was wholeheartedly embracing each of these decisions at various moments throughout the night.  I literally had no idea which way to turn, and, even after making a decision, I’m still not sure it’s the right one.  I’m just so tired, so weary, so spent.  No decision seems right, no decision seems wrong.  The only thing I was certain of was that a decision needed to be made, so I made one.  I might as well have put all the options in a hat and pulled one out.  That approach would have at least had the benefit of gaining me more sleep last night.

More on our decision later, but first a story.

As I’ve mentioned countless times before, we moved to a tiny little village last summer.  Wonderful change, amazing quality of life… save the full-frontal reminders of the barrenness that keeps me from being fully engaged in community life, save the fact that my employer runs the town and that creates some awkward personal life/professional life quandaries, save the fact that absolutely everyone knows you and everyone knows your business.  This is one of those stories.

As you might expect, I’m somewhat of a local celebrity at the itty bitty community hospital laboratory.  I was first recognized because I brought the average age in the waiting room down a good hundred years.  Then, the phlebotomists committed me to memory after I was able to knowledgeably tell them which arm is the best, which arm is most scarred, and which seemingly plump veins have a tendency to roll.  I’ve had hundreds of blood draws in the past 3.5 years, I see no sense in staying quiet and letting them use me as an experimental pin cushion, when I know better than they do what veins are the winners and what veins are just posers.  As if that wasn’t enough, then I had to use that lab for my gigantic ReproSource draw in February.  In I strolled with three big boxes of self-provided tubes, giving them instructions for what samples had to be mixed, which had to go on the centrifuge, and how to repackage them and have them waiting for the FedEx guy.  That gal looked so overwhelmed.  She brought out textbooks because she didn’t know what order to draw the vials in, she asked for an audience and advice because she wasn’t sure she could get it all in one draw (she did), and she damn well remembers me.  I also remember her.  I tend to ramble on when I assume the blood-drawing position.  I always worry that they are going to think I’m “really” sick (like, not just harboring what most insurances consider a cosmetic issue).  So, I get word vomit.  I told her what the testing was for, she broadly asked what we’d been through, I gave my usual canned response, and she offered to be my surrogate because, “Being pregnant is awesome!”  So, yea, I fucking remember her.

When I went for my beta on Monday I had a different gal (thank God).  Business as usual.  Me in, blood out, off I went.  Hours later I got the call that the beta was 11.  While less than 5 is not pregnant, my “kinda pregnant” 11 was a result of the HCG boosters I’d been taking.  It was as negative as it could have been, despite being slightly above 5.  I was, as you all already know, devastated.

Yet, with my history of ectopics and my “kinda sorta pregnant” first beta level, I still had to return on Wednesday for a redraw.  Color me thrilled.  I pounded down coffee, went to the lab with a scowl on my face, and waited.  And waited some more as outpatient intake let the toddler across from me and his doting parents cut the line.  He was cute, I was not.  When I finally got back to the lab, I assumed the position and remained silent.  The phlebotomist – not the one from Monday and not (thank God) Ms. Surrogate – seemed confused.  So, she went for it.

“Why are you here?  Didn’t you get good news on Monday?”

[Wait, this is really happening?  Hooray for medical privacy!]  “Um, I’m here to confirm what we already know.  I’m not pregnant.  At least that’s what I’m hoping for.  I really don’t want another ectopic experience.”

“But, your level was positive on Monday!  I remember because I had to ask for help.  The doctor requested we run extra tests [my TSH and P4, btw] if your value came back positive, but none of us knew how to interpret what positive was for a quantitative HCG.  We rarely do anything but a qualitative.  So, all three of us girls went and asked a doctor.  He told us any number is positive, and we were all so happy for you.  Honestly, we were kinda cheering when he told us.  We know what you’ve been through.”

“Nope, that 11 should have been a lot higher.  Oh, and anything under 5 is negative too.  It’s possible to have very low levels of HCG in your system even when you are pregnant.  But, it doesn’t matter anyway.  That 11 was purely from the HCG injections I’ve been giving myself.  Today it should be negative.”

“Well, you never know!”

“Yes, yes I do.  We’ve been doing this for so long, I do know.  The only thing I don’t know is how much longer we’re going to keep doing this.  I think we’re pretty close to done.”

“Oh, honey, you’re so young.  Don’t give up hope!  There’s always a chance!”

“Sure.  Thanks.  Bye.”

And here’s the problem that these women, that no one in the fertile world understands.  At a certain point, grasping desperately to hope hurts more than moving on.  A moment exists for everyone (and that moment is different for everyone) where hope hurts.  When saying, “I will never have a biological child,” sounds better than silently asking, “How many more years of appointments, procedures, injections, and waiting do I have left in me?”  When thinking of a future without children remains devastating, but looks more appealing than spending even more hours of your life in a hospital laboratory, in the stirrups, in the car on the way to your latest D&C.  I know I’m reaching that moment.

But, whether out of stupidity or stubbornness, our decision is to delay that day of “No more!” for a little while longer.

I just got off the phone with the nurse.  I return on Monday for my baseline.  Another probe, another prick, another cycle.  Same cocktail as last time (Gonal-F, microdose Lupron, Intralipids, Lovenox, PIO, Crinone, HCG trigger, HCG boosters, baby aspirin, Metformin, Synthroid, L-MTHF, B12, D, prenatal).  IUI.

Rinse and repeat with IUI#2 in August.  Sure, yea, maybe it will work, but preparing for the worst is a whole lot easier than being blindsided by it when it comes.  Sure, we don’t need to be deciding more than a cycle ahead of time, but we kinda do.  And here’s where I’m hoping my insurance provider isn’t reading.  Though I moved to one of 15 states with an insurance mandate for infertility coverage, I got one of the weaker mandates.  (And, we must remember, there are plenty of ways employers can get out of this coverage mandate, but luckily mine is not one of them.)  Bottom line is, if a plan in this state covers pregnancy, they must also cover infertility diagnostics, medications, and treatments at the same co-pay levels as other comparable services.  Coming from a no mandate state this is fucking awesome.  But, here’s the hitch.  All bets are off when/if we get to IVF.  Same meds, same probings, same blood draws are 100% covered during an IUI cycle, but totally out of pocket if we are doing IVF.  So, for the next two months we will do two IUIs.  Not because they will get me pregnant, not because they do anything to improve our chances (NONE of my medical conditions are remotely bypassed by IUI), and not because it’s a barrel of laughs to have another man inseminate you with a turkey baster.  We’re doing it entirely to game the system.  To stockpile meds for step 3 on our IF final solution.  IVF.

We’ve decided to do 1 IVF cycle in the fall.  One last chance to say, “We did everything we could and we’ve reached the end.”  I’m not sure whether we are doing it for ourselves or to silence those around us who ask, “Why not just do IVF?”  I’m not sure that I care what the justification is.  I just am happy we have a roadmap.

IUI in July, IUI in August, IVF in Septemberish, FETs if we have any frosties, then the end.  Life has a way of changing such neatly designed and thoroughly agonized over plans, but at least we have a baseline template that can be modified when/if needed, rather than entirely flying by the seat of our pants.

I’ll either be pregnant in 2013, or I’ll be moving on and learning to embrace our childless future in 2014.  Making this decision has been brutal, but the resulting silence is a blessing.  Now, with the decision made, in my head I don’t weep, I don’t hope, I don’t wonder.  I just embrace the silence that certainty has offered.

Hello darkness, my old friend 
I’ve come to talk with you again 
Because a vision softly creeping 
Left its seeds while I was sleeping 
And the vision that was planted in my brain 
Still remains 
Within the sound of silence

– The Sound of Silence, Simon & Garfunkel, 1964

Pre-departure checklist

So, we leave for the Walk of Hope tonight.  I’m equal parts excited and exhausted just thinking about it.

The Walk itself will be brilliant, no doubt about it.  Last year I left with a sense of inspiration, hope, and optimism that was startlingly uncomfortable to this lifelong pessimist.  This year I’m rolling up prepared.  I’ve packed my happy shit-face grin, positive thoughts, and acceptance of outdoor group yoga.  I’m excited for a vacation from my self.

I’m also excited to leave the frigid north for a beautifully sunny and warm D.C.  I’ve never liked the heat and when I accepted this new gig last summer I embraced the climate change that came with it.  That is until, on our walk home from trivia night on Wednesday, JUNE FUCKING 19th, I saw frost on the grass.  Bring on the 90 degree weather, D.C., momma’s missed it!  Shorts and sandals?  Check and check.

And, finally, we get to see family and friends, revisit some of our favorite sites, and get out of Bedford Falls, Stars Hollow, the quiet little sleepy village we now call home.  My gift to my very newly engaged gal pal down south is packed as is my appetite for all things not the pizza, McDonald’s, and pub grub one can get in this town.

But, just thinking of the drive and lack of sleep ahead of us, and the missed opportunities behind me, has me a little weary.  Mr. But IF and I slightly amended our previously discussed travel plans.  Last night I threw a (can I blame this on PIO?) temper tantrum, and finally decided I wasn’t willing to go straight from our driveway to the Walk without access to a shower or a blow dryer.  I’m by no means a high maintenance gal, but I would like to have the opportunity to brush my teeth before mingling with my IF heroes.  So, the 6.5 hour midnight drive has been scrapped.  Mr. But IF leaves work at 7, we’ve got a hotel reserved along our drive, we’ll get to sleep around 12:30, and be back on the road by 6:30am to make it to the National Harbor in time.  That means I have the time between 5 and 7 this evening to check the oil in my car, get gas, pack, tidy the house, and all that jazz before I spend the next eternity on the road.  I’ve certainly cut things closer, but I fear I’m also packing a boatload of worry.

Bruise

My left abdomen. I call this “As the bruises turn.”

And the worry is likely packed right next to the needles and sharps container I’ll be bringing with us.  Anyone have tips on how to sneak off to a bathroom with your husband in his Aunt and Uncle’s house exactly at 7pm in order to have him jab you in the ass with a giant needle?  No-one?  In related news, you remember how upset I was about the Lovenox not being nearly as horrific as I was warned?  Let’s just be glad I don’t plan on wearing a bikini to the Walk.

I won’t, however, be packing the witty T-shirts I’d planned to make.  And this has me sad.  I’ve been mentally designing these things since April, and we even named our team around the t-shirt theme, but they are not meant to be.  Call it another casualty of moving to the frozen northern tundra.  I just couldn’t get my hormonal TWWing ass up to the craft store to get the iron-on transfers I needed. C’est la vie.

But that regret has me thinking of other regrets.  I’d love it if next year (because, we are certainly going again next year!) we could form a bigger team.  What can I say, ask my trivia team, I’m a competitive person at heart and our little team of two can’t contend with the big guns on the fundraising leader boards.  And, more importantly, I’d really love to share this experience with others besides Mr. But IF.  Next year, I’m packing my team.  And we WILL have t-shirts.

Finally, I wish I had broken my silence in our small town with the aim of doing a little more local/grassroots fundraising.  The burden has fallen unfairly on the backs of friends, family members, and other infertility sufferers, and I don’t doubt a box in our public library or on the counter of our regular hangout brewpub, or an announcement on our village’s social networking site would have resulted in some donations.  Navigating our IF during this move (both professionally and geographically) has been difficult.  When you live in a company town, your personal life has a way of getting straight back to your employer.  I don’t know if I’m ready for that yet.  We’ll reassess after my 3-year review.  So, I suppose, I’m also packing a little apprehension and uncertainty about my self-identified role as an outspoken IF advocate thrust into small town life.

But, the issue of my anonymity may have to be forced sooner rather than later.  It’s premature to say much, but I received a tremendously exciting email this morning.  Like, an I-let-out-a-little-squeal-in-the-middle-of-my-meeting-when-the-notification-popped-up-on-my-iPad email.  More details to come, but suffice it to say it’s about my work on this blog.  I’m equal parts humbled and speechless.  And, I’ll have to make room in my suitcase for my growing ego.

Next stop, National Harbor!

What a (little) difference a year makes

A year ago yesterday we went in for what would ultimately be our last consult with RE#1, though we didn’t know it at the time.  I was just barely pregnant (beta of 9.6 at 14dpo) and knew yet another cycle had failed. This would be my forgotten miscarriage, the one I tend to leave out of my medical history and the one whose due date I usually have to look up to remember.  When you’re only chemically pregnant for 48 hours, it’s hard to get those facts indelibly saved to memory.

It was also the day we decided to do IVF for the first time.  A year, a miscarriage, and 9 months of birth control later, we’ve still never come close to doing IVF.  I’m having a little trouble accepting that today.  The solid hour I spent in the MRI tunnel this morning isn’t helping any either.

The thing no one really recognizes about infertility treatments until they are knee deep in them is that treatment protocols are rarely dictated by what’s medically appropriate, what is most likely to achieve pregnancy, or what is least likely to have negative side effects.  First and foremost, infertility treatments are guided by one’s health insurance policy and bank account balance.  In the case of our old insurance this meant a number of things.  First, I could use the oral ovulation medication Clomid every day for ten years and they wouldn’t bat an eye.  Never mind the fact that all it would do was aggravate my endometriosis, that it never caused me to ovulate within a “normal” timeframe, that I always had abysmal progesterone while on it, and that the hot flashes, headaches, and mood swings it caused me made me long for the simplicity of menopause.  As RE#1 said, “It’s definitely not the best treatment for you, but I guess we’ll try it since it’s inexpensive.”  So, try we did.  And, fail we did.  Two of my three miscarriages have been the result of Clomid cycles.

Aside from the fact that our insurance covered Clomid, it was also our longtime go-to option because of this lovely little thing I like to call the “asinine catch-22.”  When doing everything up to and including Clomid with timed intercourse, my insurance covered all consults, ultrasounds, blood work, and surgeries that happened in the course of my infertility workup.  As long as you were only using Clomid and trying to get sperm to meet egg the old fashioned way, you were still considered in the “diagnostic” phase of infertility.  Two years of diagnostics?  No problem!

The moment we skipped to harder drugs (injectable stimulation meds) or moved to assisted reproductive technologies (IUI or IVF) my insurance would automatically assign me the classification of “infertile.”  From that point on, all future consults, medications, ultrasounds, bloodwork, and surgeries would be subject to an infertility rider and not my normal coverage policies.  Essentially, from the moment I took that first injection, I’d pass a point of no return.  For the rest of my lifetime under that policy all non-pregnancy ultrasounds, all RE visits, all blood work, and all surgeries (whether coinciding with fertility treatment or not), would come out of a $10,000 lifetime limit for which I was subject to 25% coinsurance (insurance pays 75% of charge, I pay 25%).  That’s scary enough to think about in the first place, but when you factor endometriosis into the equation and the very real need for future laparoscopies to control the spread of endometriosis, it becomes downright terrifying.  And, once we passed the point of no return there was no coming back.  No returning to simple sex and Clomid, no “hey, just kidding, please let me have another insurance-paid-for lap,” and no routine bloodwork.  So, my insurer, not my doctor, got to tell me what treatments I was allowed to try.

But, when it became obvious Clomid was most certainly not going to be our miracle drug, we had a difficult choice to make.  Injectables stood a good chance of working, but at about $1,500 for just the medication, $100 per ultrasound (and I averaged 5 ultrasounds per cycle on Clomid due to my late ovulation), and several hundred dollars a pop for blood draws, it was a pretty expensive game of “hope this works.”  Given my PCOS, RE#1 was also fairly concerned I would overrespond on the injectable stimulation drugs and produce too many eggy targets for Mr. But IF’s boys.  This would mean canceling the cycle.  Canceling after paying for the meds, after paying for the ultrasounds, after all the blood work.  The only other alternative would be moving forward despite the over-response and seriously risking a high-order multiple pregnancy.  The thing with injectable stimulation medications is you really don’t know how you will respond until after you’ve tried them.  Injectables with timed intercourse was a pretty expensive gamble with the real possibility of a canceled cycle.  So, what was left?

Ultimately, we opted to go with IVF.  Sure, the cost was much higher, but the control was too.  Over-response wouldn’t spell doom for the cycle, and, in the unlikely event that I under-responded we could still cancel the egg retrieval and embryo transfer (the most expensive procedures) and resort to timed intercourse.  The reverse was not true, however.  If we opted for timed intercourse and I over-responded my insurance did not permit us to convert a timed intercourse cycle to an IVF cycle.  IVF required pre-authorization by the fertility department at my insurer and that paperwork took too long to be completed to allow for conversion to IVF.  On May 5, 2012, we decided we’d go for broke.  Shoot the majority of our infertility benefits on one attempt at IVF and hope for the best.  I did all the additional pre-screening required (carrier testing for cystic fibrosis, nutrition evaluation and food logs, etc.), started acupuncture, began birth control pills, paid a non-refundable “cycle fee” of $300, got my insurance pre-authorization, and waited for RE#1’s IVF coordinator to call.  I waited, and waited, and waited.  Finally, my IVF cycle was pre-approved by my insurance on May 29, coincidentally the same day I was two states away interviewing for what would ultimately become my new job.  With pre-approval secured and a month of birth control suppression under my belt I was certain I’d be starting my cycle any day.  Then the IVF coordinator, a woman I’m thoroughly convinced is both the nastiest and stupidest woman I’ve ever met, called to schedule my cycle.  On May 29 she scheduled my cycle to begin on July 28.  I was devastated.  I asked why I had to wait and she said “our June and early July cycles are full, this is the best I can do.”  I crawled into my hole and settled in for a long wait.

On June 12 I received an email from the IVF coordinator informing me that the RE’s negotiated rates with my insurance for IVF cycles was doubling beginning July 1.  At our consult on May 5 we had been told our $10,000 lifetime max typically stretched to include the bulk of two fresh IVF cycles.  (Medications came from a separate $10,000 pot which helped a ton, and we anticipated I’d need low doses of meds due to my PCOS.)  Now, with the new negotiated rates, my insurance would not even cover one fresh cycle in its entirety.  I was furious.  It became very clear to me why, exactly, I’d been bumped from the June cycles — had I cycled in June the RE’s office would have made half as much off of my case.  I retired to my special “phone calling room with a door” at work (also known as our broom closet) and proceeding to scream and cry at every individual that worked at my RE.  I ultimately told them to shove their practice, shove their IVF, and shove their horrid IVF coordinator out a window.  (And, that’s probably being a little gentler than I actually was.)

On Friday, June 15 we canceled our IVF and separated all ties with our first RE.

On Monday, June 18 I was offered a new job in an infertility mandate state at nearly twice my old salary, 10 times the respect and responsibility, and 100 times the potential for upward mobility.  With no potential for fertility treatments in our future, I jumped.  I’m typing this from my gorgeous new (old) house, in my sleepy friendly village, a few blocks from my amazing new workplace.  In many regards, life couldn’t be better.

Except for one thing – I still regularly wonder what would have happened had we gone through with that IVF.  I love my new home, my new job, my new friends, my new colleagues, but I’d love being the mother to the two week old that I’d have from that IVF right now even more.  But, we can’t spend our lives wondering, I suppose.  Or can we?

One of the primary questions you confront when battling infertility is whether you should live for the now or live for the what if.  When I opted to accept a new job and move, I did a little of both.  Most certainly my “now” is better.  Our social life, home life, work lives, and relationship our stronger here than they were in our old state.  Separating myself from the physical reminders of so many painful memories – my first miscarriage, my Hashi’s diagnosis, the room I’d always planned would be our nursery – has been welcome.

But, a small part of me still admits that the “what if” factored into the decision as well.  Sure, the path to pregnancy here wouldn’t be as immediate as it might have been had we stayed behind and bounced to the competing RE practice across the medical complex parking lot from RE#1, but here I would have a slightly more infertility friendly state on my side.  Unlike our previous insurance, this state mandates that infertility treatments up to, but excluding, IVF must be treated by the insurer as if they were any other medically necessary treatment.   Our next cycle (should we get the green light to try again from the rheumatologist tomorrow) will involve injectable stimulation meds, an injectable trigger, injectable blood thinners, and injectable progesterone support all for the cost that I routinely paid for Clomid last year.  There is no switch we can trigger to cut off my lifetime supply of benefits and, though it still isn’t entirely in my or my doctor’s hands, some amount of choice has been returned to us from the hands of my insurer.  As an unfortunate trade off, IVF is permanently off the table for us here unless we save up and take the plunge 100% out of pocket.  All visits, tests, procedures, and medications used in conjunction with IVF are specifically excluded in full from my new insurance.  My state mandate still lists IVF as “experimental.”

There’s one final element of our decision to move that I classify as addressing the “what if.”  Should we ever succeed, motherhood here will be incredibly more fulfilling than it would have been there.  Living in modern-day Mayberry – this land with beautiful parks, friendly villagers, devoted schools, and neighbors who don’t own keys to their homes because their front doors have never been locked (NOT an exaggeration, btw) – literally makes my uterus ache with want.  Now that spring is springing I hear the babies on our block giggling and crying through open windows, I see the little ones in the park run in their awkward little goose-steps, and I’m eyeing my next-door neighbor’s suspicious little belly that I fear portends a sibling for 2-year-old T.  And it all smacks of two very different what if’s.  First, the what if that brought us here.  That silent hope that someday I’d be carting our little ones to the weekly farmers’ market in their little red wagon.  Second, and much more common these days, is the what if that may chase us from here in coming years.  What if I’m never able to join in fully in this community?  What if the giggles and strollers and parks and la leche league posters in the coffee shop become too much?  What if this is just another stop in my career, rather than my permanent professional home, because I can’t bear living child-free not-by-choice in Mayberry?  What if, it seems, we made entirely the wrong choice last summer?

A year ago yesterday I was at peace.  For the first time in over a year I had hope.  Tonight, I have a different type of peace.  The peace of a sleeping husband by my side, a lovely kitty at my feet, and a new patio furniture set on our deck.  But, I don’t have hope the same way I did back then.  Another year spent in this infertility demolition derby has left its dents.  I’ll let myself wish.  I’m wishing right now for good news from the rheumatologist tomorrow.  But, wishing is different from hoping.  Wishing is somehow more whimsical, more ethereal.  When one wishes they don’t always expect it to deliver, so the soul is crushed less when it doesn’t.  Hope is for those that desperately want and expect a desired outcome.  I just don’t have the energy to hope anymore.  I left my hope up on the shelf next to my ill-fated IVF.

The thin line between pessimism and self-preservation

How did couples survive before GChat?  Mr. But IF and I certainly aren’t ones to hold anything back when talking face-to-face, but the problem with that whole face-to-face thing is that it really cuts into the trashy TV viewing/computer game playing/Internet comment making/ element of our infertility battle.  GChatting?  Well, when the alternative is working, then, why, sure, let’s have a meaningful conversation right here and now!

him: oh, random anecdote for your blog that I forgot to tell you about yesterday
Dentist (to me): “You and your wife has such straight teeth – you’re so lucky, when you have kids there’s no way they’ll need braces!”
that was rough
don’t know why, but definitely a gut punch
Sent at 9:24 AM on Tuesday
me:  ouch
Sent at 9:25 AM on Tuesday
him:  yeah
those are the ones that get to me…when it’s just an abstract, “we’re infertile”, no problem
when it’s imagining the kids that aren’t, not so much
me:  sorry… don’t even know what to say
For whatever reason, those comments don’t bother me anymore
none of them
i put on my hard crusty armor
and evil laugh because I have no hope left that we will actually have children
🙁

So, umm, yea.  Apparently I don’t have any hope left?  The things that flow stream of conscious-like from your fingertips, eh?

Commence tailspin of introspection.  If I don’t really have any hope left, why the injections, why the expense, why the emotion, why the blog?  Am I just a masochist?  An attention whore?  An idiot?

While the answers to those questions could most certainly be yes (I mean, I did kinda enjoy those PIO shots in a “Oh, yea Mr. But IF, stick it to me!” kind of way), I think the bigger answer is that self-preservation mode kicked in a looong time ago.  Probably sometime around our ectopic in 2011.  Walking into maternity triage, requesting chemotherapy to kill a hard fought for implanted embryo, and getting two quick jabs in the bottom after 15 months of trying to conceive, it desensitized me.  Two losses and two years hasn’t returned my optimism.

I can’t even imagine a baby with my crooked toes, his baby blues, and our straight teeth.  I can visualize future conversations I’ll have with my RE, I can recall the physical pain of a miscarriage, and I can even ramble on about a future in which we have found a resolution; but, I find it totally impossible to open myself up to imagining our biological progeny.  It feels so far away and so unreachable.  An effort as insurmountable as understanding the vastness of space, the speed of light, or, for that matter, why I’m infertile.

If there’s one thing way too many years in the academy has taught me, it’s that just because a question is impossible to fully answer, that doesn’t mean it’s not worth asking.  (If you’re in the humanities it may mean you’ll be getting no grant funding to answer said question, but 1. I guess that’s not really the point here, and 2. that actually resonates pretty well with infertility seeing as we’re not often deemed worth of external funding either.  Hey, look, I’m both worthless professionally and personally!)

So, what would our ever-so-hoped-for child look like, be like, live like?  I guess straight teeth are a given.  The rest?  I really hope I get to find out.

What is in a name?

As I sit here this cold Monday morning, Lady Grey tea in hand, kitties at my feet, waiting for the fireplace guys to come clean the pellet stove insert in our new home, I’m doing some reminiscing.

First realization (and if you’d known me a few years a go, this would be an utter shock), life is good.  No, really, it is.  I’m married to a man I adore, and who challenges, entertains, inspires, and, yes, infuriates me every day.  In 8 years I’ve earned two advanced degrees, numerous awards, been published in a premier journal, and, just this summer, had all this hard work pay off and lead to a new wonderful position in a new town, where we bought our new (old) house, and are making our new friends.  For whatever reason, I have earned loving and loyal friends throughout all stages of my life, and I married into a large family that, while very different from my own, loved me instantly and completely.  And, yes, there is the whole “kitties & tea” thing – that certainly never hurts.

Prior to early 2011 the realities of my life on paper were much the same, but life was most definitely not good.  I hurt.  Emotionally, physically, wholly.  Years of doctors appointments – high school physicals, college health center, grad school health center, new “big girl job” PCP – had left me with the belief that the only things wrong with me were those things I was doing to myself.  As the weight piled on, I was, at best, given referrals to therapists, and, at worst, accused of sleep eating.  Now, I was never thin.  Even while dabbling with an eating disorder in late high school and early college, I still never lost.  (Probably one of the reasons I “dabbled” rather than falling completely into that hell like so many women and men before me.)  But, years of silent calorie counting and exercise kept telling me one story, while the scale told me another.  By my mid-twenties I was gaining 20-30 pounds a year with a strict diet and exercise regime.

But, said the docs, you are depressed!  I knew I was depressed, I had no doubt I was depressed, and I’d most definitely been depressed since middle school.  And, thinking about how I still managed to be depressed even when everything in my life was going so good, just made me more depressed.  When my body started aching, my mind started failing me, my chronic constipation took over my life, and my desire for sleep reached a level that only an addict jonesing for his/her next fix could appreciate, I marched my fat self back to the doctor.  Apparently, the sleep was from depression, the body aches and back pain were from my tubby self sleeping too much, the constipation could be IBS or not enough water or my obviously bad diet, and the mind was me just needing to accept I was getting older… at 25.

Then, I went off birth control.  The same birth control I had gone on at age 18 because I was sick and tired of wondering when my next period would come, and when I would next need to miss a week of school writhing in pain and vomiting on the floor as my mom encouraged me to sip warm port wine.  My first visit with Aunt Flo (or AF as the cutesy types in the online IF world call it) was when I was 11.  From 11 to 18 my cycles ranged from 30 days to 10 months between periods.  My mom trotted me into the doctor, was told I was “young” and just needed time to regulate, and brought me home defeated.  When we mentioned the extreme and crippling pain I would have whenever menses did arrive, I was told to get used to the joys of being a woman.  When one older male physician told my mom that, “If your daughter’s cramps are as bad as you say they are, then I would think you’d be happy she cycles very irregularly,” I thought she was going to choke him out right there in the exam room.  So, at 18 I learned to stop worrying and love the pill.

Trouble is, you can’t really love the pill when you want a baby.  When I quit it in 2010 to begin building our family, I was not remotely surprised when I didn’t have another period for 48 days, then 43 days, 62 days, 58 days… I was 8 months into trying for a baby, and had had 4 periods.  More problematically, my friend the basal body temperature chart told me I wasn’t even ovulating.  Back to the doctor, more recommendations to lose weight, eat right, and wait for my body to regulate.  So we waited.

We waited until one morning in February 2011 when I woke up for work, looked at my husband, didn’t know who he was or what is name was, and started to panic.  When Mr. But IF had sufficiently calmed me down, he wisely brought me a telephone to call out of work for the day.  Trouble is, as he handed me that rounded chunk of plastic, I had no clue what to do with it.  “Phone” seemed familiar, the feel of the object in my hand seemed familiar, and even the thought that this was the item one used to order pizza, connect with relatives, and snag a work-free day seemed familiar, but how to actually accomplish those things with a brick named V-tech?  Nothing doing.  Mr. But IF had me to the doctor same day.  She asked me what I thought was wrong, and I told her what I’d told her several times before.  Please check my thyroid.  I begged, tears came, and she ran the tests.

I dragged myself into work the next day, and spent the day forwarding my phone to every new office or workspace I found myself in.  (I’m convinced, by the way, that Google Voice is one of the most essential tools in my battle with the health care system.)  When the phone call came I was wonderfully alone in an office with my husband.  Our conversation went something like this,

Nurse: The doctor wants to schedule a follow-up.

Me: Ok, great, when?

Nurse: Um, now!  Today.

Me: What were my lab results?

Nurse: Um, well. <Sounds of shuffling paper> There are quite a few…

Me: TSH, all I care about is the TSH!

Her: Oh, ok.  55.38.

Me: <Tears.  Tears.  More tears.  Tears of joy at being right.  Tears of anger for being ignored for so long.  Tears of pain for all my hurts.>

For those that don’t know much about thyroid disease, you’ll likely hear a lot if you stick around here.  Suffice it to say that the normal range now recommended by the American Association of Clinical Endocrinologists is 0.3 to 3.0.  On February 8, 2011, mine was 55.38.  I wasn’t fat; I wasn’t depressed; I wasn’t a complainer.  I was sick.  Very sick.

It took another year and a miscarriage to diagnose both the PCOS that was contributing to my absent menses and the Endometriosis that was making them so unbearable.  But, in that year I benefited from the number 1 lesson I’d learned through Hashi’s.  NO ONE WILL CARE ABOUT MY HEALTH UNLESS I MAKE THEM.

**************

So, 1,200 words in and I guess I’m finally to the point of this post.  (I’ve mentioned I struggle with brevity, right?)  Why have I named this little corner of the Web “Not When, But IF?”

The first meaning is pretty transparent I suppose.  Infertility (IF) brings with it a loss of predictability in one’s life.  Go to any infertility support group, visit any online support forum, or talk to your friendly neighborhood infertile (you know, that friend of your mom’s cousin), and loss of control is a theme you will hear about regularly.  We don’t know when, how, or even if we will be able to build our families, and it is because of IF.

Though it isn’t a theme I’ve yet to detail here, I should mention that at every doctor’s appointment during which I brought up my absent menses and ovulation and subsequent fears of future or current infertility, I was reminded that I was young, that these things take time, and that it would happen “when the time is right.”  Not if, but when, the cheery nurses would say.  But, for 1 in 8 couples, however, that couldn’t be further from the truth.

There is also a deeper, more personal meaning to “Not When, But IF.”  I often say to my support group that I have a complicated relationship with hope.  I’m still trying to decide whether I say that because it is nice and quippy and makes me sound smart, or if it actually gets to the root of something deeper.  It’s probably a bit of both.  For better or for worse, my complicated relationship with hope has a lot to do with the fact that I loathe it as a concept for its utter laziness.  When someone tells you to hope (chipper obnoxious nurses, my well-meaning Aunt, the stranger on the chat board), it feels accusatory, dismissive, and uninformed all at once.  Had I hoped more, would my body not have killed my last baby?  How could hope have detached the endometriosis adhesions connecting my bowel to my abdomen?  I hoped so damn much that my doctors would take me seriously and test my thyroid, but that hope wasn’t fulfilled until I demanded action.

Thus, the other meaning of “Not When, But IF.”  While I pray not everyone will have the difficult path to diagnosis that I’ve had, many unfortunately will.  And to those women I say don’t wait for an eventual moment when your doctor will take you seriously.  Change will come if you educate yourself, seek out your own answers, get second, third, fourth opinions, and demand that the time for attention is not some when in the future but now.

And, lest I sound nauseatingly Type A, self-righteous, and put together, let me add that doing the above can still be absolutely overwhelming and terrifying to me.  On Friday, I learned that I’m likely in for yet another battle in this long war toward health.  Routine labs run by my endocrinologist last week now reveal a highly elevated ANA titre (1:1250 speckled pattern) that could indicate an additional autoimmune disease (Lupus, Sjogren’s, Scleroderma, and mixed connective tissue disease being the most likely culprits), could be the lingering effects of my immune system killing my last baby, or could be absolutely nothing at all.  But, until I find out, I’m stuck sitting here, wondering when and if I’ll ever get my answers.