Back in the desk chair

My, does this post feel mighty overwhelming and a good bit overdue.  What have I been up to, you ask?  A little travelin’, a little workin’, a little gettin’ sliced open.  You know, same old.

Did you notice my site went down?  Down for like a couple weeks?  Yea, that caused the jitters to set in big time.

Luckily, a few Abita Ambers in a jazz club on Frenchmen Street calmed those jitters right down.  Mmmm… New Orleans.  Mr. But IF and I went down there a couple years ago for a vacation/family wedding and have been itching to go back ever since.  Luckily, with my professional organization selecting NOLA as the site of its annual meeting this year our dream came true.  (And, came partly paid by my employer at that!)  NOLA is rapidly becoming one of my favorite cities in America, and I’m already anxious to get back again.  This time it won’t be for a wedding, or a conference, or any other sensible purpose – it will be to embrace this city I’ve learned to love so quickly.

I was a little worried that going back to New Orleans would stir up old wounds.  Our first pregnancy was conceived there in 2011.  The only thing it reminded me of, though, was the love I feel for my husband.  (Yes, even as we wandered the French Quarter cranky as all get out.)  It also reminded me of the need to embrace these in-between moments in our TTC journey and wring every last drop of joy out of them.  We played pool in a local bar with a ragtag bunch of local casino dealers, we snuck back to the hotel in the middle of the day for a non-procreative romp in the sheets, we swayed to the music.  I lived life so fully and so outside of the manner I’ve become accustomed to.  It was beautiful.

Our flight home last Monday came far too early, and our travel time was made far too long by a miserable delay in the 10th circle of hell that is LaGuardia.  We arrived at our door around 5pm, we welcomed our usual bunch of Grilling, Growlers & Buffy friends over for dinner and an episode at 7pm, and my saintly mother-in-law arrived around 9:30.  A few hours of shut-eye and my mother-in-law and I were off to the RE bright and early the next morning for my laparoscopy.  In the car by 6:30am, at the office by 7:30am, walked into the surgical suite near 11am.  I love how like molasses time becomes when you’re in the hands of a medical practice.

The surgery went well.  Actually, better than expected.  After our last lesson in “be careful what you believe when a doctor says it” I’m not going to put much stock in doc Soulpatch’s quick post-operative exclamation of “It all looked good!” but my anesthesia-cobbled mind was happy to hear there were fewer spots of endo regrowth than anticipated and that my questionable right tube looked “wonderful.”  I’m proceeding cautiously until I have my final post-op appointment with the doctor next Tuesday, but it sure was better news than I expected to wake up to seeing as Mr. But IF and I spent large portions of our transit time back and forth from NOLA discussing what life would be like if I woke up to hear they’d removed both my tubes.

This was my second laparoscopy in 18 months, so I was thankfully no stranger to what recovery would be like.  Actually, the most uncomfortable moment of the entire ordeal was probably hearing the words, “nothing in your vagina for two weeks” while sitting with my mother-in-law waiting to go back for the procedure.  (Having just flown off to NOLA for a week, Mr. But IF had to work the day of my surgery.  World’s Best Mother-in-Law drove 3 hours to our house to drive me an addition 1 hour to my doctor to sit for an addition 5 hours for my surgery, to drive home another hour with a drug-addled passenger, and, finally, drive a final 3 hours back home in time for work the next day.)  So, yea, recovery was what it was.  I watched far too much Netflix, ate too many popsicles, and slept for what seemed like a solid 24 hours on multiple days.  Surgery was last Tuesday, I took my first trip out of the house on Friday, was back to work on Monday, and threw another Buffy night for a party of 25+ on Monday.  Either I’m a masochist or Mr. But IF is trying to collect my life insurance – I’m not sure which.  Either way, I’m 1w1d removed from surgery today and feel fully myself again.

I’ve had a lot of thoughts running through my brain about endometriosis lately.  Why is it so poorly understood, why are the paths toward diagnosing, managing, and curing it so under-explored, why is this debilitating disease so ghettoized within the medical, research, and patient communities?  That’s another post for another day, but suffice it to say now, dear readers, I’ve got angst.  I’ve got bitterness.  I’ve got frustration.  And I’ve got them all because even 1 week after my “it wasn’t that bad” second surgery I sit here feeling so much more human than I did 1 day before said elective surgery.  Regrowth was minimal, no serious anatomical issues were discovered, and the surgical glue is practically still drying in my three incisions, but I feel so much better now than I did just over a week ago.  No pain, no constipation, and a supremely healthy sex drive.  (Timed wonderfully, of course, to fall smack dab in the middle of my “nothing in the vjayjay” period.)  Immediate relief from a surgery I was told was unnecessary, for a disease I was told I didn’t have for so long, for a case so mild I’ve been told to be thankful.  I’m not thankful, I’m pissed.

So here I am back in the desk chair and back to reality.  A reality of waiting, of taking deep breaths, of wondering what’s around the corner.  A reality so different from my NOLA dreamland.  I’m back to counting the days.  5 until our consult with the RE.  How many until we can start IVF?  How many days of stims?  How many days past retrieval?  How many days until transfer?  How many days until the beta?  How many days until I miscarry?

Less than 2 weeks ago I was swaying in d.b.a. as John Boutté sang:

Don’t waste you time being angry
when a moment’s better with a smile
if you feel you’re time’s been wasted
waste it here a while
– “At the Foot of Canal Street”

My scarred body may be back in this desk chair, but perhaps I should leave some of my mind in New Orleans?

Electives

I actually used to like electives. You know, the classes no one could make you take? The ones where you got to explore in an academic setting the bits and pieces that made you you.  My senior year of high school was divine.  In addition to my usual butt-load of advanced placement (AP) courses, I indulged in taking both band and chorus.  As drum major, band was my first love, but hanging out in the choir room with my primarily chorus kid friends and high school musical co-stars was a lot more exciting than, say, physics.  Intro to Acting, the Philosophy of War and Peace, Film and History, Race in the Age of Empire – I spent my high school, college, and two graduate school careers embracing that word “elective.”

In the past several years, however, “elective” has been redefined.  No longer the fun extras in my life, my health conditions and physical needs are now viewed in various ways as “elective.”  This became clear to me again yesterday as I sat through my (predictably underwhelming) pre-operative consult with the fertility clinic.  After reviewing my medical history, current medications, past experiences with anesthesia, and all the other bells and whistles, the NP began her pre-scripted laparoscopy/hysteroscopy speech.  I learned of all the many ways I could die, be rendered permanently sterile, or be reliant on a colostomy bag for the rest of my life as a result of the surgery I’ll have again on August 20.  I was asked to give my consent to undergo removal of my tubes should the surgeon deem it necessary, and was advised that a hysterectomy would be performed should that option be medically necessary to save my life.  Yet, none of that discussion was unanticipated.  Yes, it made my heart race, but I sucked it up and, with a fair amount of been-here-done-this-before positive thinking I nodded in agreement.  Until the following was uttered: “And, you understand that this procedure is entirely elective.  This procedure is not necessary for any reason other than potentially improving fertility.”  No, that one startled me.

Don’t get me wrong, I completely understand that I will not die tomorrow if I do not have this lap.  Endometriosis has not caused my heart to be one beat removed from its last, and in the world of “will I die in an hour if you don’t operate?” my procedure is about as elective as they come.  But, I do take offense at the sentiment that this procedure is only being performed in the hopes of improving my fertility.  Honestly, my hopes of that ever happening sailed off into the sunset a looong time to go.  Like, after the first lap that didn’t result in immediate fecundity.  The knowledge that we are moving to the very expensive and very not covered by insurance land of IVF following this thankfully-is-covered-by-insurance laparoscopy definitely impacted our decision to move forward now, but by no means am I only doing this lap to improve the likelihood of a positive IVF outcome.  I’m doing it for a whole host of other “trivial” reasons, such as the following:

  • To be able to have a bowel movement more than once every few weeks;
  • To minimize or even eliminate the extreme leg, back, and pelvic pain I feel EVERY SINGLE DAY;
  • To make it possible for me to actually work and function for the first three days of my menstrual cycle, rather than be tied to a bathroom variously vomiting, thinking about vomiting, changing my super/overnight pad/tampon every half hour, or washing another pair of underwear, jeans, and sheets that bore the brunt of my latest pad/tampon mishap;
  • To decrease the fistfuls of Advil I have for breakfast, lunch, and dinner when my period arrives;
  • To shorten my 10 day periods to a lovely 5 or 6;
  • To enable me to have sex with my husband without being immediately engulfed in tears from the searing pain of penetration; and,
  • To, you know, remove the fucking abnormal growths that are slowly destroying my body and my quality of life.

So, no kindly nurse, I do NOT understand that this procedure is only being done to improve fertility.  In my mind, it’s being done to make my life worth living.  Thanks for advocating for the health and happiness of your patients, by the way.  It’s not like those of us with endo are facing a very difficult climb to get respect from insurers, employers, and society at large.

At least this time around I know up front that my surgery will be covered by my insurance.  Last time I was living in a state with no statewide insurance mandate for the coverage of infertility diagnosis and treatment, so, as I mentally and physically prepared for the impact the surgery would have on me, I also had to financially prepare for the impact it might have on my pocketbook.  In a state without insurance mandates, my “elective” exploratory laparoscopy in 2012 was, as the insurance call center rep informed me, “on equal medical footing with a breast augmentation.”  And, she continued, “We don’t cover breast augmentations!”  It was an odd experience to wake up ecstatic to hear that abnormal cells were growing on my ovaries, tubes, and pelvic wall, and had fused my bowel to my abdomen.  I was thrilled to be ill because it meant the surgery would be paid for by my insurance, not by depleting our savings.  So, things could surely be worse with this second at-bat at this having a hole cut in my stomach thing.

I thought electives were, you know, supposed to be elective?  Something you chose, something optional, something to be assessed, debated, and voted on.  How, then, is my infertility elective?  At what point did I chose to be infertile?  When did I decide to allow endometrial tissue flourish outside of my uterus?  And, if this is something I “turned on,” how the fuck do I turn it off?

Pass the wine and tampons

Do I really need to write a post? That about sums it all up, really…

Mr. But IF’s aunt and uncle visited this weekend. We hit the local brew pub, wandered the famers’ market, did a brewery tour, saw an amazing national music act in a tiny rural theater, and ate a lot of great food. Simply put, I actually started to forget the hell of last week. I started to embrace living life again. I started to appreciate a world where not everything revolved around my cycles and my injection schedule.

Then, yesterday, my period came. And, like last month, it came with a vengeance. Bleeding heavier than any of my miscarriages, cramping reminiscent of my worst adolescent cycles, nausea, vomiting, and constipation that serves as an ever-present reminder of the endometriosis wracking havoc on my internal organs. Not even the most remote possibility that the prior days’ bliss would remain undisturbed. It’s one thing to go through the mental process of grieving another failed cycle, mourning the fact that natural conception has passed us by, preparing ourselves for the surgeries and IVFs ahead. It’s entirely another to weather the physical reminders. Almost 4 years later, the physical reminders still catch me by surprise.

But, not all surprises have to be painful. Some can be truly overwhelming, humbling, and positive. I got one of those last week, too. A gift card, a novelty mug, and a giant virtual hug from my ladies in the computer. Thank God for the Internet.

Tomorrow is my pre-op. It will surely be underwhelming. I’ve walked in these shoes enough times before that I know it’s not worth getting excited about this important-sounding appointment. They’ll review my current medications, they’ll ask for my history with anesthesia, they’ll take some blood, and I’ll drive home wondering why the bulk of that couldn’t have just been done over the phone like it was for my last lap two states away. But, it does mean that I’ll be one step closer to my lap, one step closer to recovery, one step closer to IVF. And, one step closer to being done no matter the outcome.

Ch-ch-ch-changes…

With no more cycles to focus on for a while, I clearly need something else to spend my time fretting over.  The winning obsession?  This blog.

I think it is safe to say I’m not going to quit blogging any time soon.  Barren and blogging.  It’s my schtick these days.  With that in mind I thought it was time to start a bloggy overhaul.

Most of the changes should (at least for the moment) be nearly invisible to most regular readers.  And, that’s intentional.  Last thing I want to do is upset ya’ll with too many dramatic changes, so the caveat I’ll add for this entire post is, as always, if you see something you don’t like, shoot me a line.  I do truly appreciate feedback.

The change and my reasons: To start with, I’ve purchased a domain for the site and transferred my hosting away from WordPress.com.  When I first started out I didn’t know how much I’d like the whole blogging thing, so, even though I’m an experienced web designer that frequently uses various scripting, encoding, and transformation languages for my day job, I went with the easiest out-of-the-box solution I could find.  That was WordPress.com.  The goal was to get pain to virtual paper, not to show off a fancy design.  Without a flurry of cycle-related updates to post about for the coming months, I figured now was as good a time as ever to transfer over to the big guns.  Hello my lovely CSS and javascript — I’ve missed being able to muck about with you!

The impact to you:  Hopefully very little in the short term, though you’ll need to make some changes in the long run depending on how you regularly access this site.  The address for this site is now http://www.notwhenbutif.com (note: the “wordpress.com” has been dropped from after “notwhenbutif”).  If you click on old links, have the old address bookmarked, or otherwise find yourself being pointed to the old address, no biggie, it will seamlessly redirect you here.  This may change next year if I choose to transfer my domain registration and cancel site mapping, but for now you’re golden.

The major negative impact, however, is to those of you who follow this blog through a wordpress.com or e-mail subscription.  Please update your settings if you want to keep getting these updates sent to your blogroll or arriving in your inbox!  (Also, note that you can choose to follow me on Twitter, on Facebook, and via email through the resources provided on the right of each page!)

The change and my reasons: So, we now know fully and firmly that I won’t be getting pregnant by doing a naked tango with the mister.  It’s all egg retrievals and embryo transfers from here on out folks.  And, in a land where IVF is considered equivalent to an elective boob job, that means a whole lot of spending is about to go on.  I never had any illusions that this blog would ever earn me any cash (and that TOTALLY wasn’t the point, so no skin off my back), but with IVF on the horizon I figured why the hell not try and prove myself wrong.  You’ll notice a few (hopefully tasteful) ads here and there in coming weeks.  Even if I only earn a few pennies a month, that should at least buy me a few gallons of gas to make one 2 hour round trip to the clinic.  We’ll see.  It was pretty cool that the first random ad that was sent my way was for Attain.  Good match, Googlebox, good match…

The impact to you:  Hopefully none at all.  But, if you notice any offensive ads shoot me a line and I’ll reassess this great ad experiment!

Thanks for bearing with me folks!  Now I feel ALL THE FREEDOM (but, sadly, have none of the time at the moment!).  In coming weeks and months, though, actual noticeable changes may be rolling out your way.  As I wrote in my first ever post, I may not be able to procreate, but at least I’ve birthed this blog.  And, I suppose, this little blog is growing up and finding some independence.  Here’s hoping we’ve got a while until it starts stealing my liquor and taking my car.

Errr, scratch that last post

Apparently when a man leaves a frantic rambling message on fertility clinic’s after hours line it attracts someone’s attention.

Mr. But IF returned to his office after lunch, called, and about 30 seconds later my own office phone started ringing.  Turns out surro-phlebotomist or someone of her vampiric ilk dropped the ball and the results never made it from hospital lab to fertility clinic.  A quick call to the hospital later, and the nurse had my answers.  Beta is 10.

This still doesn’t meet my clinic’s (ridiculous if you ask me) definition of “not pregnant,” but, I’m not pregnant.  They wanted another redraw on Saturday, but I have my laparoscopy post-op appointment on Tuesday already scheduled so I asked to just defer until then.  They agreed.

So, that’s all folks.  My gallant nearly 4-year attempt at getting pregnant by having sex with my husband died today.  Next stop, laparoscopy part deux.  Arriving at the operating theater near me on August 20.

If you’re looking for an update…

… you’re not going to get one.

Had my beta drawn at the local lab at 7:45am this morning.  Drawn by a phlebotomist-in-training.  A phlebotomist-in-training that was being trained by “I’ll be your surro!” gal.  I was introduced as a frequent flier, and also used to teach vampire-in-training what to do with used sharps containers.  It was a laugh a minute.  “I’ll be your surro” was genuinely sad when I told her I most likely wouldn’t be seeing her again until October at the earliest.  She pouted as she asked, “But why?”  I was feeling vindictive, so replied, “If you have $15K you want to give me for our next attempt I’ll come back sooner!”  She stopped talking then.  The silence was beautiful.

On Monday, the night before beta #1, I was so anxious I couldn’t sleep.  I had such trouble sleeping that I overslept and didn’t get to the lab until about 8am.  Then I got stuck behind poor little old confused woman that had come a week early for her pre-op and was jamming up the works at outpatient admitting.  Blood didn’t leave my veins until 9am.  I got the call from the clinic with my beta of 38 at 11:15.

Having gone much earlier this time around, I was hopeful for an earlier call.  I waited.  A computer went down at work and I couldn’t fix the connectivity issue.  I cried like a baby.  (If our IT doesn’t stop fucking around with network I swear they will receive the full brunt of my next Lupron crazy attack.)  Then, after submitting  ticket that basically said, “Stop fucking with our network!” I resumed my waiting.

One nice thing about working at the same university as Mr. But IF is that we generally have lunch together.  Today was no different.  When noon rolled around, we met at our usual spot, and I had my phone and list of WTF questions for the nurse on the table and at the ready.  I was sure she would call just as I took that first juicy bite of my apple.  But, I’m no n00b.  Even after the father and his prospective student daughter sat down right the fuck next to us I knew I’d still gladly shout over the din in the cafe to ask questions about my progesterone levels, inquire about cycle package costs, ask when to start my birth control, and demand a consult to discuss future protocols rather than just continuing to do them on the fly.  It’s then when I realized something.  Something that was about to turn Mr. But IF into a stammering pile of bright red German anger.

It’s Thursday.  The clinic closes early on Thursday.  In fact, the clinic closed 10 minutes ago.

Guess I’m not getting my beta results after all.  Given the one line pee stick I got this morning, I decided to celebrate being royally fucked over yet again with a giant cup of coffee.  I might follow it up tonight with a giant pint (pints?) of beer.  I have no hope, I’m just sad that Mr. But IF did.  And, just upset that he’s upset.  I lost all faith in humanity and the kindness of infertility clinics long ago.  Against better judgement, he seems to have retained some.  I hate being right all the time.