A year ago today…

A year ago today…

  • We woke early, bundled into our car by 4am, and headed out into a snowstorm.
  • We drove 230 miles to Woodbury Long Island to meet with the reproductive immunologist who offered our last hope.
  • I was 8 weeks pregnant with our third pregnancy.  I was still pregnant, but the news had been rocky from the start.
  • I saw our little one’s heart beating for the last time in Dr. B’s exam room.
  • We heard the verdict of “This may work out, this may not, I do not know…”  We left with a plan (lovenox, prednisone, IVF, and, possibly, PGD) should the pregnancy end (which, of course, it did the following week).
  • We drove another 230 miles home, buying a wedding gift for my cousin along the way.  We’d ultimately miss her wedding as I was 6.5 hours away miscarrying in my bathroom.  She’s currently set to pop out her first next month (yea, that didn’t take long).
  • We digested the news over a prime rib special we devoured during old people dinner time.  460 miles on the road for a 45 minute appointment that left us with more questions than answers can stir up an appetite.
  • We rejoined our friends, our normal life, at our weekly Wednesday night trivia game.

Today…

  • I leave in 10 minutes to drive an hour to the regional perinatology center.  I will meet my new practice for the first time.  I will wait in a waiting room with fellow high-riskers for the first time.
  • I’m 20 weeks, 3 days pregnant with our darling son.
  • Our son is kicking me as I write this.
  • I’m putting the finishing touches on my list of questions for the MFM.  I’m making modifications and additions based on the mock-appointment my therapist and I held last night.  I’m reminding myself I have agency in this pregnancy, I have knowledge, I have power.
  • I’m getting a stomach ache at the thought of starting all over with a new unknown practice.
  • But, that stomach ache is eased by my insatiable appetite and little man’s jabs.
  • If all goes well with the appointment, I hope to take advantage of being in the “big city” and stop off at a Hallmark to buy thank you cards to send to the amazing men and women who have ALREADY showered us with baby gifts.
  • I hate that I just prefaced that with, “If all goes well.”
  • Ultimately, though, today is so much better than a year ago…

When an itch isn’t just an itch…

This weekend was amazing.  I outgrew my favorite jeans, and wore maternity jeans for the first time to our post-holiday holiday party.  At said party I chatted with the first-time mother of a 10-month old.  We talked symptoms and nurseries, play dates and day care.  Her husband took me aside and said bittersweetly, “I don’t know whether this will hurt or help to hear, but I just am so happy for you.  You don’t know how many times I’ve asked myself why it is we had A so easily, while the both of you have had to fight so hard.  It’s just so unfair, and I couldn’t be more thrilled for you.”  This weekend I was rocking zenned out happiness.

Yesterday was not amazing.  Yesterday, after weeks of happy absence, the fear came crashing back.  The doubt my body could do this, the suspicions that we would ever have a happy ending.  Yesterday I talked lab results, waited hours for a doctor’s call-back, hit up those medical journals yet again.

Today?  Today I’ve mostly found peace.  I’m celebrating a doctor that listens (and makes after-hour calls and last minute appointments).  I’m taking my new pills.  I’m finding comfort in this familiar discomfort.  And, I heard baby But If’s heart beat.  No day can be a bad day when that’s a part of it.

It all started on Thursday.  A routine prenatal visit.  Actually, it was my first visit to the OBs that wasn’t super exciting.  It was “routine” in every way possible, and that was new.  I yet again peed in a cup (who knew that 4.5 years of practice would come in so handy?), I reviewed my symptoms, I heard the heart beat with the doctor’s doppler.  That was about that, and he perfunctorily asked mid-way out the door if I had any final questions.  Well…

On the long drive up to his office I’d been debating whether to mention something strange that had been on my mind.  You see, it’s not a drive to an appointment if I’m not pre-planning my conversations with the doctor.  Anyway, over the past couple of days I’d noticed an itchy rash developing on my hips.  And, increasing joint pain.  But, you know, 17 weeks pregnant and all, how silly must I be to be concerned about skin changes and joint pain?  But the hip thing had me startled.  If you’ve been around here for a while, you might remember I’ve mentioned my itchy hips before.  And the last time I off-handedly mentioned these ample hips of mine to an MD it got me sent for additional blood work.  And, then that blood work came back, well, off.  So off that we were forced to stop TTC while the elevated anti-nuclear antibodies (ANA) were investigated by a rheumatologist.  A rheumatologist that turned out to be both prone to cancelling appointments and utterly useless.  So, that’s how a mundane-looking rash was slowly starting to work me up to a panic.  I ultimately decided to go for it… what’s the point of all these appointments if I don’t regularly make myself look like a hypochondriac fool?

The OB, God love him, sat right back down and asked a few more questions.  He didn’t blow off my silly rash like, well, the silly rash it looks like.  He understood why I’d be concerned since the last time I’d had this constellation of symptoms I was in the midst of an unexplained miscarriage at 9 weeks after seeing several strong heart beats.  He reassured me that it was probably nothing, but did say he wanted to draw another ANA level just to “ease my fears.”  He was actually more gentle with my emotional state than I actually even needed him to be.  I wasn’t really concerned, per se, just curious.  He took that curiosity as blinding fear and reassured me as he left that the ANA was a quick test and I should call the following day (Friday) to get the results from the nurse.  “There’s no reason for you to worry all weekend!”  As he left the room I heard him in the hall telling the nurse to expect my call.  10 points for Dr. T.

Well, the next day I called, but, as so often happens, the reassurances of the receptionist that the nurse would call me back that day were overly optimistic.  I didn’t hear anything.  But, I also didn’t worry all weekend.  I put it out of mind.  I mean, I wore maternity pants and talked day care, for Christ’s sake!

Yesterday morning the results posted to my online patient portal.  1:1,250 homogenous pattern.  (Again, normal is under 50.)  I’m right back where I was after our last miscarriage.  I flew mentally right back to that place.  To the worry, the incapacitating fear, the dread.  The OB opens at 8AM.  I called at 8:01.

Turns out my OB was off doing surgery at another hospital all day yesterday.  A call-back from the nurse reassured me she’d message him.  A second call-back told me he’d replied to her immediately by e-mail and would call me as soon as he could get out of surgery.  So, having taken the day off work, I waited, ate chocolate, and watched Bomb Girls.  By noon I still hadn’t heard back, so I wrote a message to my former reproductive immunologist.  He replied back quickly with a few suggestions for additional testing (anti-XA to make sure my Lovenox dose was correct and another anti-phospholipid antibodies test to make sure I was still negative), but reminded me that, at his practice, he doesn’t even seen anyone past the first trimester specifically because he doesn’t believe immune/autoimmune issues matter much once the placenta has taken over supporting the pregnancy.  I mean, of course they matter, but not in the sense that they spell immediate doom to the pregnancy.  That helped to calm me immeasurably.

At 6:30pm the phone rang.  It was the OB.  He apologized for being stuck in surgery all day, and immediately got down to business.  I needed steroids, and I needed them now.  10mg of methylprednisolone for 7 days, followed by 5mg from the next 7, then a re-check of the ANA and my complement levels in 2 weeks time.  A flare of some sort is happening, and while it’s scary, he reassured me that 1. we caught it early, 2. this is not all that uncommon in someone with a complex autoimmune history, and 3. we’re out of the scary first trimester and have no reason to believe there is anything wrong with the baby just because my body is going haywire.  Luckily, the placenta is a fairly good nanny and keeps out most of the nasties my body seems prone to producing.  Then he said, “If you were my wife, well, I know you’d want the reassurance of hearing the heart beat again soon.  Can you come in tomorrow?”  I didn’t have the heart to tell him I’d been cheating on him with my home doppler, so that, combined with the fact that I NEVER pass up the opportunity for an appointment (and to pee in a cup), I said, “Yes, absolutely!”

Our appointment today went well.  I heard that thumping heart again, and he answered many of my questions.  We’re treating it as if I now have lupus and am experiencing a lupus flare, even though no rheumatologist (or any doctor for that matter) has been confident enough in my symptoms and lab work to label me lupus.  Lupus or no lupus, the treatment of an apparent immune flare is the same — short course steroids, followed by careful monitoring of my ANA and complement levels, as well as keeping a close eye on the littlest But IF.

It’s strange to leave an appointment where so much of the conversation was dominated by discussions of my new heightened risk of pre-eclampsia, pre-term labor, intrauterine growth retardation, and warnings to watch myself closely for other (lupus?) flare symptoms, with such a sense of ease and calm.  The drive for answers has been one of the few things that has kept me going on this sometimes unbearable journey to biological parenthood, when other options could have been investigated.  My gut told me that being diagnosed with spinal arthritis in my early 20s wasn’t right, that loosing 3 pregnancies (including a strong looking 9 weeker) didn’t add up, that an ANA that high surely couldn’t be nothing, that frequent fatigue and body aches that weren’t resolved by the best thyroid care I could muster made no sense.  Whether its lupus or not I really couldn’t care at this point, but seeing “nonspecific connective tissue disorder” at the top of my discharge paperwork this morning was a huge moment to me.  I’ve stopped believing that we’ll ever have all the answers for why we’ve had to go through what we’ve gone through, and have accepted that, no matter our need for answers, that for so many of us the answers will remain “It could have been” or even “We’ll never know.”  But having that label on that paper, having a doctor take my silly rash seriously, having a physician look me in the eye and thank me for bringing my concerns to him because, “It’s great we caught this so early,” that makes all the difference in the world.

I’m trying not to think to much about the future, to be honest, but am just focusing on the present.  Today we found some more puzzle pieces that were wedged in between the couch cushions.  Who knows if we’ll have the time, energy, or desire to finish the puzzle, but finding those pieces is a necessary first step.

Now, would I have given anything to avoid all this and continue on in my blissful, rash-free, non-lupusy, pregnant happy state for the next 6 months?  Fuck.  Yes.  But, if this had to happen, I’m glad this is how it all went down.  I’m glad that from 4.5 years of fighting, learning my body, and ceasing to give a crap what others think of me, I’ve come out the other side stronger and better able to help myself and ask others for help when help is needed.  I’m glad I’ve learned that sometimes and itch is not just an itch.

Not quite the Incredible Hulk

So, I started my ‘roids yesterday morning.  After three unexplained miscarriages, a whole host of autoimmune diagnoses (Hashimoto’s, endometriosis, Raynaud’s) and suspected diagnoses (Lupus? Rheumatoid Arthritis?), a full battery of immune testing, and a visit to the reproductive immunologist, it was decided that a low daily dose of steroids might be beneficial during this IVF.  The theory goes that, by quieting my haywire, over-active immune system, we might actually be able to trick my body into holding on to a pregnancy for once.  So, bottoms up.

I’ve heard of others having difficulty sleeping as a result of steroid use, so I asked my clinic if it would be wise to take them in the morning.  They agreed with that plan, so that’s what I’ve done.  I’m laughing at that now, of course, as I initially started this post last night and promptly fell asleep at around 9:30 before getting the chance to finish it.  Insomnia my ass.

I also did my first go-round of injections last night.  225 Gonal, 75 Menopur, and 5 units Lupron.  Other than a little bit of a learning curve with mixing the Menopur (how genius are Q-caps, by the way; why don’t we get them with HCG?), all went smoothly.  It dawned on me then and there, however, how dang much Gonal I’m using this time around.  My first injectables cycle I only used one 900 Gonal pen for the entire cycle.  This time?  I’m going to kill a 900 pen before I even go in for my first monitoring appointment on Monday.  Sheesh!  (And, I totally don’t even have any right to complain seeing as I’m actually a pretty good responder… or at least we think I will be?)

I think it’s pure coincidence, but I’m already crediting my ‘roids for some super human healing powers.  I totally screwed up my knee at my fitness class on Wednesday (see people, this is what happens when you exercise! Much safer on my sofa…).  Yesterday I was hobbling around like an awkward fawn, and moving my heating pad with me to each new desk I had to sit at.  (Luckily, my colleagues are used to my “quirks.”)  Today?  Yea, still a teensy bit sore, but honestly much, much better.  Sure, it was probably just a pulled muscle that corrected itself as pulled muscles are prone to do, but I’m gonna believe it was the healing elixir of my new little pill, the baseballer’s best friend.  Cause, you know, I’m hardcore like that.

I’m glad the knee is on the mend as well because we are headed out of town tonight to make the drive down to the in-laws.  Mr. But IF’s home town agricultural fair is happening, so we’ve got a long day of wandering around looking at barnyard creatures and eating fried things to attend to.  It’s funny how our pre-marriage negotiations went.

Me: “I want kids.  At least 2.  When we’re young.”

Him: “Sure.  No matter where we live, though, I want to get back to the Fair at least every other year.  K?”

Me: “Yea, why not.  I’m sure the kids will love it!”

Well, at least one of us is winning at life, eh?

So, to summarize, drugs flowing, knee mending, fair going.  Happy Friday!

Look ma, no sex!

Well, I guess we’re (maybe, please let this happen, body don’t fuck with me anymore, seriously did I say “please” yet?) getting this IVF show on the road.  My period arrived late last night, my baseline appointment is scheduled for bright and early on Wednesday, and this better damn well finally be happening.

(But, again, you notice all the apprehension above?  The near compulsive need to use weak words and not express any sense of certainty?  I’ve ridden the chair lift to the top of “OMG We’re Doing IVF!” Mountain before, and I’ve still never been skiing.  I’ll believe this is happening when they’re knocking me out to retrieve my eggs and when I’m handing over that mighty-sized check.  Until then, we’re maybe doing IVF.)

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

I’ve kept things pretty much geared to the battle-hardened IF foot soldier around these parts.  Half because I’m a big, pompous jerk.  I tend to hate it when I go read IF blogs and they’re spending their time teaching me about cervical mucus and temping. (“No shit, Sherlock.  Temping is sooo 2009!”)  And, of course, half because, in addition to being an arrogant busted-uterus bitch, I’m also about as lazy as my ovaries when it comes to going that extra mile.  I dumped way too many years of my life into explaining newbie shit to newbies on FF, so, yea, when I finally get it together to write a post here you can be sure that (most of the time) I’m diving straight in.  Don’t get me wrong, I love it when I get questions or comments at the end of my posts asking for clarification or more info because 1. that means you are reading (yay!) and 2. it gives me something specific to direct my response to.  In case ya’ll haven’t noticed I tend to struggle with brevity.  If you leave the entire wild world of IF writing to me to tackle in a given day I will try to tackle it fully and completely (and terribly).  Ain’t nobody got time for that (least of all me).

Ok, so, anyone still reading?  Have I insulted you all sufficiently that you’ve huffed on off to greener, rainbowier, unicornier pastures?  No?  Well, hello my masochistic ilk.  How the hell are you doing?

All that was a long-winded (told ‘ya!) way of saying I’m about to do a little IVF 101.  While I know the bulk of my audience are folks that have been or currently still are in these bloody trenches with me, it also warms my heart to know that a few amazing real-life friends have found and follow me here.  And, while these friends with normally functioning lady-bits and man-parts have been truly remarkable in their support of me and Mr. But IF over these past many years, fact remains you really can’t know much about IF until you’ve lived it (and I hope to God none of them EVER have to live it).  So, here’s the only things I hope you ever have to learn about IVF in general and my unique IVF in particular.

Now that my period has started (and, might I add, not on its own but thanks to yet more pills… stubborn MTHFR-er… hehehe <IF insider joke>), I’m set to go to my first appointment of this IVF cycle.  This appointment is called the baseline appointment, and it usually occurs on day 3 of a woman’s full flow menstrual cycle.  For me, that is 7:15am on Wednesday.  At the baseline I will have bloodwork drawn to measure my hormone levels and I will have a trans-vaginal ultrasound performed to check the state of my ovaries.  (Oh, and yea, remember that “full flow” comment before.  That ultrasound probe is one damn lucky piece of plastic, eh?)

Assuming all checks out with this first appointment (hormones that should be low are low, hormones that should be high are high, all the ultrasound shows are a bunch of immature egg-containing follicles, etc.) then I start the injections.  Everyone’s injection schedule is different depending on their IVF “protocol” (and, in fact, some protocol’s would have called for me to begin injections before the start of my period), but I’m going to focus on what I’m doing – the “flare protocol.”

Beginning on Wednesday I will inject 225IU of Gonal-F, 75IU of Menopur, and 50 Units of microdose Lupron nightly.  In other words, and I’m totally not exaggerating here, that’s 225IU of follicle stimulating hormone (FSH) derived from genetically modified Chinese hamster ovary, 75IU of a FSH and luteinizing hormone (LH) mix derived from the urine of post-menopausal women, and 50 Units of menopause-in-a-bottle.  You know how the mass market media always makes IVF and other assisted reproductive techniques sound all high-tech, sciencey, and fool-proof?  Yea, somdays I think it would be better if I just ate some hamster ovary, let some grandmother’s pee on me, and called it a day.

The act of doing daily timed injections is far from new.  I’ve done the Gonal-F and the Lupron before; the Menopur will be new.  What is totally new is the high doses.  In all of our previous cycles we were shooting for one strong, healthy-looking, egg-containing follicle.  Rupture one good egg, have sex (or an intra-uterine insemination, aka IUI), wait two weeks, positive pregnancy test, wait 9-months, healthy baby But IF.  But, yea, that never happened.  And, since that never happened we are now moving on to IVF where all sex is taken out of the equation.  Gone is the 1-egg goal, now I want enough of those suckers to field a pro football team.  More eggs means more drugs.  This is where things get new.

Thing is, you can have too much of a good thing.  Over-stimulation and ovarian hyperstimulation syndrome are real risks.  The possible negatives range from me feeling like a bloated uncomfortable piece of shit, to me entering liver failure or rupturing an ovary.  Put simply, bad things can happen.  But, Mr. But IF and I are so very hyper-aware of those bad things (and our clinic’s apparent blase attitude toward those bad things) that we’ll stay on top of it.  No worries, dearies.

During the days of these injections I’ll return regularly (about every other day) for more bloodwork and more ultrasounds.  This is called monitoring.  We’ll watch as the follicles grow and mature, a process that hopefully occurs at an even-pace across all the follicles.  If I develop a “lead follicle” – or one follicle that seems to be growing faster than the rest – that may threaten the entire IVF.  Remember, the goal here is to retrieve as many mature (meaning similar in size) eggs as is possible without subjecting me to any unnecessary risk.

Once the ultrasounds start showing a bunch of follicles in the 18-20mm range and my bloodwork (primarily estrogen levels) suggest a number of healthy, mature follicles, I go in for egg retrieval (or ER).  There is no way to know for sure when this will happen, but typically it’s about 10 days after starting stimulation meds.  That puts us at about September 28, give or take a few days.  Retrieval is much like many of the other lovely procedures I’ve already subjected my lady bits too in the past several years.  I will strip down, have a needle passed through my vagina and into the ovarian follicles, the fluid from each follicle will be extracted to look for the tiny eggs, and then I’m done for the day.  Oh, and yes, I will be mildly sedated.  Woot!

Once free from my shitty body, the eggs will be injected with DH’s finest swimmers via a process known as intra-cytoplasmic sperm injection (or ICSI, pronounced “ick-see”).  Hopefully, my eggs love injections as much as I do and the egg/sperm combos get down to the business of becoming embryos.  Each day after retrieval we will get a call telling us how our microscopic children are doing.  Many won’t make it, many won’t fertilize, many will appear abnormal.  These things happen to all normal people and are the reason why even the fertilest of Myrtles only have about a 20% chance of achieving pregnancy each month.  By doing IVF with ICSI I’m just kinda getting to live through about a year’s worth of “tries” all at once.

Depending on how the embryos are developing, we will prepare to put one back anywhere between 3 to 5 days after they were retrieved.  This step of the process is called the embryo transfer or ET.  It’s actually not that much different than the IUI I’ve done before.  No needles in the hoohah, just my old friend the catheter.  Catheter in, push of the plunger, catheter out, and I’m what we IF lot call PUPO – Pregnant Until Proven Otherwise.

I get to start a whole new batch of lovely meds after the ER, continuing through the ET, and up to my pregnancy test.  None are knew.  Vaginal progesterone (aka cottage cheese I squirt “up there” daily), intramuscular Progesterone (aka big fucking needle Mr. But IF sticks in my ass), HCG booster injections (aka stuff that fucks with home pregnancy test results and means I can’t use them), and steroids (aka I haven’t gained enough weight with all these other drugs so why not add some more?).  I’ll also be repeating my Intralipid IV infusions.  Both the Intralipids and the steroids are being done under the advice of our Reproductive Immunologist who believes my immune system has contributed to my miscarriages and general inability to get and stay pregnant.

Then, finally, it’s the big day.  The pregnancy test day or beta day.  This will be about 10-14 days after the embryo transfer and will involve yet another trip to the hell on earth that is my local hospital lab.  After that?  Well, either we’re pregnant (“How long will it last?”), we’re not (“Where’s the whiskey and the cheese curls?”), or we’re a little bit of both (“Inconclusive results AGAIN? FML!”).  If the answer is ultimately bad we turn back to the embryos we have left (if we have any left) and go through another transfer called a frozen embryo transfer or FET.  Basically, we do the transfer and the post-transfer meds, but not everything leading up to that point.  We do that as many times as we can, and then start from the very beginning all over again.  We’ve paid for two “fresh” IVF cycles (with the requirement that we use any frozen embryos before moving on to our second fresh attempt).  On one hand this means it can be a little overwhelming to realize how huge a part of the next 6 months to a year of our life this process might become; but, on the other hand, there is a lot of peace to be found in the fact that we know we’ll have a second chance if things don’t go smoothly the first time.

So, in a nutshell, that’s where we’re at.  Oh, and we’re never going to be able to have sex again (it’s verboten throughout most of this process).

“Hey, honey, let’s make a baby.  I’ve got my needles, and here’s your cup!”

Do or do not. There is no try.

Yes, my reproductive endocrinologist quoted Yoda this morning.  So, yea, that happened.

Today was my post-op appointment/WTF appointment/IVF consult.  (Clearly, when you’re driving an hour each way, it’s good to make sure you can cram as much as humanly possible into one trip.)  The visit started nicely enough.  We were escorted back to the comfy couches in what I’ve titled the “Den of Solitude.”  The name’s part a dig at the obscenely dark wall color, and part remembrance of the long-lonesome wait we had there for my D&C that came a day too late.  Awesome room, awesome memories.

The doc reaffirmed that surgery went fabulously, that my suspicious right tube looked “wonderful,” and that I was young.  We discussed my visit with the reproductive immunologist during my last failed pregnancy and went over that specialists’ recommendations.  I said, “he suggested Lovenox, which we added to the last two cycles, and Prednisone, which we didn’t.”  What I didn’t say was, “The Prednisone which the NP said we couldn’t do we didn’t add.”  So, guess what?  6 months after I first sent an email inquiring about Prednisone, I was told, “Why don’t we just try some Prednisone and TI or IUI?  It works for a lot of my immune patients!”  Head, wall, again.

The mister (likely seeing dollar signs flowing through his head) seemed into that (insurance-covered) option, I said, “No.”  We were exactly in this place 15 months ago.  We walked into our IVF consult, we got our calendar, we paid our down-payment.  We left with a plan.  A plan that got derailed by a money hungry clinic, an asinine insurance system, and a interstate move.  I wasn’t leaving this second IVF consult with another aborted IVF plan.  I simply said, “We need to move on.  We need to try something different.  We need to know that there is an end in sight and our lives might one day be back to normal.  This is the step we need to take before I have no stamina left to keep trying.”

The answer?  “As Yoda says, ‘Do or do not.  There is no try.'”

Basically, the next 15 minutes were filled with yoga recommendations, self-help book suggestions, mantra repetition, and the soft-eyes of my close-talking RE glaring uncomfortably into mine.  I’m not a feeler, I’m an analyzer.  I rarely talk emotions, but regularly talk statistics, clinical studies, and journal articles.  There is no more certain way to bring on my rage than to turn my quest for medical insight into a “how do you center yourself?” discussion.  I grinned, I bared, I pinched the skin between my thumb and pointer finger so tight that I can still see the redness 7 hours later.  But, ladies and gentlemen, we have a plan.  (One that I’ll surely relay in fuller course in the next several days.)

See, here’s the thing with conversations that go like this.  I truly do understand the medicine behind relaxing and minimizing the worry.  As someone with both endocrine and autoimmune disorders I get how putting your body under unnecessary stress triggers a cascading waterfall of nasty, hormone- (and thus fertility) impacting issues.  Back in the days before we moved and when we still lived in civilization, I did acupuncture, I hosted a support group, I sought counseling.  I’ve drunk the Kool-Aid when it comes to believing that reducing one’s stress is a can’t hurt, might help accompaniment to traditional infertility treatments.  (And, lest you misunderstand, this is a far, far cry from saying that believe that “Just Relaxing” will cure my infertility.  That, my friends, is just a steaming pile of bullshit.)  It’s exactly this belief in the power of minimizing freak-outs that fuels my hatred for Doc Yoda’s attitude this morning.  You know what stresses me the fuck out?  Knowing I get about 10 minutes with my doctor once every 12 months and having to spend all of it answering questions about my yoga practices.  So, congratulations doc, you just added so much more stress to my life.  A+ effort and all that.

I treated the rest of the appointment like a junkie hoping they’ll get a discount if they listen to their dealer talk about their new pitbull.  Doc’s got the stuff I need, be a good girl and let the doc talk.  I left with my scripts for steroids, stims, estrogen and progesterone support, intralipids, and Lovenox.  Oh, and a healthy dose of stress.

As we were preparing to leave the consult room, Mr. But IF asked a few more questions about the lap findings.  Basically, our third/fourth/fifth utterances of “are you sure my tubes are fine and there wasn’t an endo annexation of my bowel occurring?”  Yes, tubes fine, no, minimal endo.  I replied, “That’s a relief.  I expected worse due to how it looked last time and how many quality of life-impacting symptoms I’ve been dealing with.”

“Are you alive?” he asked.

“Err, yea.”

“Then the quality of what you do with that life is totally up to you.  Only you can improve that.”

[Blank stare.]

“Have you read about the man with no arms and legs?” he queried.

“Uh, no?”

“You should.  If he can find joy, so too can you.”

I left my comments regarding my mother’s joyless chemo unspoken.  I got my drugs.  I got my probing.  I got the fuck out.

My parting gift?  A giant middle finger from my body.  I knew it was too good to be true when he said we could start stims as early as tonight if I appeared to be baseline.  The ultrasound showed a giant follicle/cyst on my right ovary, and bloodwork revealed a mildly elevated P4 and LH.  I could have ovulated (and left a corpus luteum cyst behind), I could be about to ovulate (and be witnessing the final growth of the follie), or I could just have a rock star lazy non-functional cyst hanging around.  Either way, I’m neither ready to start IVF nor ready to take Provera.  Bloodwork on Friday to check what’s up.  More waiting!  Huzzah!

I wonder if I can “use the force” to get this cycle going?  Probably not seeing as I fully inhabit the dark side…

Fatty acids on board

This morning I returned to the RE for my first Intralipid infusion.  It was my first time at the RE since I triggered ovulation, and my first experience with Intralipids (ILs).  Despite a morning of firsts, it was a pretty boring event.

IV drip stand and bag with intralipids

My vein milkshake

I’ve been aware of ILs for a while now, but up to now have always had doctors who strongly poo-pooed both ILs and the entire world of immunological infertility and miscarriage.  Back in my young, naive, spry days I remember asking RE#1 about immune implantation failure and ILs or IVIG and his immediate response was, “Get off the Internet!”  My inner self replied, “As soon as you get your head out of your ass,” but I smiled, thanked him for his time (why do I do this when all I can think is what a waste of my time such visits are), and went home to bitch to my friends in the computer.  So, though RE#2 is by no means my favorite person in the world and he often makes me miss RE#1, I was happy to discover when pursuing his website before making our move that he did at least do some therapies aimed at the immune system.  Granted, he does no immune testing, his NPs and nurses no less about the therapies than I do, and he blindly moves all repeat loss patients (RPL) to his cookie cutter RPL protocol (Lovenox, Baby Aspirin, ILs) without a thought toward their history or medical background, but even when motives aren’t quite pure, the results can still be positive.  And, I’m feeling positive now that my own Intralipids are on board.

Intralipid is a brand name for a type of fat emulsion.  Basically, the “medicine” is comprised of soybean oil, egg yolk phospholipids, glycerin, and water, and is administered via an IV drip.  The substance was initially created to help nourish adults and infants who are unable to get sufficient nutrients.  At about 2,000 calories per infusion (ack!) that makes perfect sense.

Somewhere along the way, however, it was postulated that ILs could also correct immunologic dysfunction in the uteri (yes, hah, that’s the plural) of women experiencing infertility, repeat miscarriage, or repeat IVF failure with normal-appearing embryos.  As Dr. Braverman explains, “Intralipids have a suppressive action on certain components of the mother’s immune system, essentially safeguarding the embryo from the immune reactions which might otherwise result in a miscarriage.”  As the lucky recipient of two autoimmune diagnoses (Hashi’s and Raynaud’s), the sufferer of three miscarriages (including one 9 week loss of a normal-looking, strong heart beating almost fetus), and the owner of a set of crazy and yet undiagnosed autoimmune lab results, I’ve decided it’s time to throw everything there is at this trying to conceive shit and see what works.  I believe in my heart something immunological is happening to cause my abnormally low progesterone and HCG and to interrupt my pregnancies.  We know my immune system is already fucked by i’s propensity to attack itself, so why is it so strange to think it’s also attacking babies?  I’m loudly shaking my head along to Dr. Sher who writes, “In my opinion, it is very regrettable and unfortunate that so many patients are denied the ability to go from ‘infertility to family’ simply because (for whatever reason) so many reproductive specialists refuse to address the role of immunologic factors in the genesis of intractable reproductive dysfunction.”  Preach it Dr. S!  So even though medical researchers are still spouting the same, “appropriately controlled, large-scale, confirmatory studies are necessary,” hurry up and wait, I had 2,000 calories of egg yolk and soybean oil injected straight into my vein this morning.  Breakfast of champions indeed!

Now, normally ILs would be given a few days prior to ovulation, a few days after, and then again sometime in early pregnancy.  This is what I wanted, this is what we planned, this is the proper way of things.  But, when we mapped out this entire cycle back in March Intralipids were on a nation-wide back-order at every specialty pharmacy currently covered by my insurance.  I frantically messaged my NP through our patient portal, told her I couldn’t get the Intralipids, and asked what to do.  She replied with a simple, “Oh, yea, they’ve been backordered for a while now.  We’ll make do without them.”  I’m glad she was so fucking calm, because I most certainly wasn’t.  Then my high ANA was discovered and I was left hanging in the breeze, unable to try and conceive, stuffed full of birth control pills again, and waiting for the world’s most unhelpful doctor visit to pass me by in mid-May.  When this cycle started we reviewed the meds I had in my possession (those gathered for the March cycle that never happened), I got poked, I got probed, and the rest was history.

At my final follicle check before I triggered I had the “good” NP (and not the “chipper” NP, the “grumpy” NP, or the “clueless” NP I’d had for prior scans that cycle) and she dutifully asked me to review my history and the plan for the cycle.  I explained it all and she asked why we weren’t doing ILs.  I told her I’d tried in March but was told it was hopeless and there were none to be had.  She informed me that they had a new supplier and that I really should be doing them.  I agreed immediately.  She wanted to book me the next day (the day of my trigger) for my first infusion.  And here’s the hiccup.  First, the meds had to somehow be ordered, approved by insurance, paid for, and shipped across two states in under 24 hours.  Doable (I’ve done it with PIO before), but not exactly stress-free.  Second, and the bigger deal, I would need to take an entire morning off work with only a few hours notice.  With an hour drive each way to the doctor, and two hours spent in the chair receiving the drip, that’s at least a 4.5 hour absence.  I have freedom to take time as I need and my boss has been quite supportive, but I just couldn’t do it.  So, I didn’t get my pre-O dose in.  I’m not incredibly concerned about it, but I am annoyed by how it happened.  Between my baseline and my final scan I had 5 appointments with the RE to discuss my protocol, yet only at the last was this question (a question I would have never thought to ask myself) raised.  Once again, my treatment is being dictated by bad timing.  Next thing you know I’ll have the gall to miscarry again on a weekend!

The infusion itself was, I don’t know, what’s the word?  OK?  Fun?  Not terrible?  Oddly relaxing?  Honestly, it was probably my best trip to the RE because 1. no talked to me much, and 2. I didn’t have to take my pants off.  (Yes, the things that make for a very bad night on the town, make for a very good visit to the RE.)  It’s strange the things I worry about in advance of my appointments.  Last night I wasn’t remotely concerned about the infusion itself – the needles, the drip, the visual, the waiting.  What I was concerned about was what they were going to do with me, where they were going to set me, what my surroundings would be like.  I’ve complained before about my ski chalet fertility spa clinic, and this is perhaps a topic I should expand upon a little more in future weeks, but long story short, I hate feeling like I’m being pandered to, like my medical condition is being minimized, like only aggressive femininity is catered to by my fertility boutique.  The Bose speakers blasting tranquil bird and water sounds, the Keurig in the lobby, the overstuffed furnishings and fireplaces, and the spa out back do the exact opposite of relax me; they enrage me.  So, my biggest fear with the Intralipids was that they would set me in some dimly lit cave of tranquility while administering them and that the entire time I’d be getting increasingly annoyed that my fate had come to this.  Me, the gal who hates getting her hair done at a salon, the woman who’d prefer a beer and football to wine and a chick flick, left to fester in a doctor’s office most convincingly camouflaged as a day spa.  Talk about the awful things IF has done to me!

Typing with IV drip

I should definitely get overtime for this!

To my great pleasure, however, I was whisked away to a bright and sterile procedure room, instructed to sit in an exam chair that reclined to a lounge position, given a warm surgical blanket, and asked to review my history and sign several consents.  Once the IV was in I was handed the water bottle and laptop I’d smartly brought from home and more or less left to my own devices for the next 2 hours.  I got a little work done, worked on the questions I’ll be asking when Mr. But IF and I host our village’s weekly trivia night on Wednesday, and before I knew it time was up.  It would have been perfect save dealing with the pulseox monitor they required me to keep on my finger, which greatly inhibited my typing.  (I was hoping to post this from my chair this morning!)

Now we wait.  My first pregnancy blood test is a week from Monday.  Hopefully the milkshake my veins just drank in does some good, and even if it doesn’t my morning alone with my laptop and thoughts certainly did.