Rising to the Occasion

I sat down after the cycle failure last night and took inventory of all the myriad emotions swirling through my head.  There was one discordant note that stuck with me: that this ending had come with no final input from the RE that really has been excellent through so much of this process.  It seemed so out of character.  I was so jarred by it that two o’clock in the morning found me awake, staring at the ceiling, aching and angry.

Most of the overall situation is fairly inevitable and unfixable – I cannot change the outcome of the cycle, I cannot change the past seven years, and I cannot change the fact that big decisions lie ahead.  Infertility yanked the illusion of control out of my hands when it comes to reproduction and really, most of life.

But I could hunt down this one small loose end and try to tie it up.  I could express my feelings – bewilderment, sadness, shock that this final phone call with the nurse was the end of the relationship with the clinic and doctor who had really seen me through so much.  I called, spoke to the office manager, and (surprisingly calmly) used my words.

I’m very glad I did.  My RE called me back this evening and we had the discussion that I wanted to have, needed to have at the end of this part of the story.  I’m grateful to him for being open and honest about the various reasons things went down the way they did yesterday and getting the chance to close things on a truly good note.  It was the compassion I deeply needed to hear.

I would be lying if I said I don’t tend towards cynicism far too often in life.  I’m not great at faith or hope or trust in anything from medicine to science to churches to myself to other people to G-d Themselves.  Every now and again, though, I’m surprised and I get a small glimpse of something good.

This is one time where, I’m happy to say, my hope was rewarded and my RE rose to the occasion wonderfully.

I don’t really believe in “closure”.  Like so many other griefs, resolving infertility will be an ongoing process.  Even when we’ve finalized the last of the decisions, I suspect there will be pangs that pierce me at the most strange and random moments for many years to come.  Infertility will no longer be one of the major, ongoing parts of my life, but it will always be a part of my story.

That being said, on this one part, I was able to have a moment of genuine resolution.

Right now, for me, that is a victory.

Nope

The beta was negative.

It’s one of those sort of, well, moments, if you know what I mean – it’s by no means the end of the world or even up there among the cruelest moments infertility has dealt to me over the years, but it also just plain sucks.  Maybe because it’s such a reminder of the real cruelty of infertility, the part where you get your hopes up over and over and over again, only to have them dashed into the reality of a cancelled cycle or your period or blood at the wrong time or a negative beta or the scan that shows that the embryo is in the wrong place, doesn’t have a heartbeat, or is an empty sac.  It’s not so much the individual cr*ppy moment, it’s the compendium of varying degrees of cr*ppy, exhausting, or outright tragic days that make up a torturous drip that wears, bit by bit.

It’s also, a little, the pervasive sense of being a sucker who somehow allowed myself to go back to the glittery high-stakes roulette table that is fertility treatments and roll like I was going to win.  I know what those odds look like, and yet, somehow, allowed myself to get my hopes up.  Adding a bit of insult to injury, the RE that has – in the past – been fairly compassionate couldn’t be bothered to call with the beta results.  The nurse told me he wanted to “make sure I got the results earlier” (reality – it took around 7.5 hours from my blood draw to get the call and I had told them that I already knew it was negative as I’d taken a home pregnancy test beforehand) had a “full schedule” and would be “happy to offer us a post-cycle consult” but he knows that this was the end for us.  There’s no reason to go to the hassle of having my husband take off work and putting the kids in daycare.  We talked about it extensively at the pre-cycle consult. It stings that in the end, I didn’t merit even a five-minute phone call with tough news.

It’s the reminder that infertility still has a sting in its tail, long past the point I thought it could really wound me this deeply.

I don’t know what happens now.  We’re done with IVF and fertility treatments.  We don’t know whether or not to see if something breaks loose without medical assistance.  Or if that ship has just…sailed.  We’re lucky and exhausted and sad and grateful and angry all at the same time right now.  I guess mostly we now just sit with all the myriad emotions and live.

Allergic to IVF

In all the scenarios I ran in my mind over the years relating to my infertility misadventures, I can honestly say I never pictured one in which I added an Epi-pen to the running tab of my various fertility medications and procedures.

~*~

The whole thing started Tuesday afternoon.  I was sitting on the couch reading and reached up to scratch an itchy spot at the back of my head.  I found a small, raised lump, much like an insect bite, rolled my eyes (mosquitos in October?  In the house?  What else could have bitten me?) and thought not much more of it – until about 30 minutes later when I found another, and then another.

A bit alarmed now, I wondered what kind of insect problem we might have with this many bites.  My ear had started to itch as well, but then a couple of things distracted me: it was dinner, and Arthur called with bad news.  Staff at the home where his 101-year-old grandmother lives found her unresponsive and sent her to the hospital where imaging revealed a large brain tumor and a brain bleed.  The only thing to do was send her back to her apartment with hospice, which was arranged.  Arthur needed to make the 2-hour drive to say good-byes, so he came home, gave me my progesterone-in-oil (PIO) shot, and headed out.  The next several hours were a blur of making dinner, refereeing various fights between the girls, and getting kids ready for bed.

I didn’t really think much more of the mysterious itching – which was getting worse – until I sat down around 8pm to scroll through Net.flix and relax.  I quickly discovered itchy, red bumps on my arms, my torso, and suddenly, my right eye felt as though it wasn’t opening quite fully.  I hurried to the mirror.  My face had small, red blotches everywhere and my eye did look mildly swollen.  Oh, I’m having some sort of allergic reaction.  I watched a show, took some bena.dryl, rinsed myself in the shower with cool water and swapped out my towel/sheets/pjs for ones I knew had been washed in unscented detergent, and went to bed.  Woke up briefly when Arthur got home late, but thanks to the meds, largely slept through until morning.

The next morning, my eyes felt stiff and hard to open.  Hives ran red over my torso.  My scalp – covered in what I now knew were hives – felt like it was on fire.  My ears were swollen and itched.  Arthur – home because of his grandmother’s situation – stared in horror.  I put in a call to the RE’s office as soon as they opened and talked to the nurse, who promised to get hold of Dr. E and call me back.  At that moment, all I could think was am I allergic to the prednisone?  I’d taken all the other meds in other cycles and never had a reaction.  I’d even opted for the PIO in ethyl oleate rather than the PIO in sesame oil since sesame oil has a higher chance of allergic reactions.

My eyes grew more swollen.  I watched in horrified fascination as I could actually see the red progressing in places on my abdomen.  More ominously, two hives had formed near my bottom lip and were spreading quickly.

About an hour and a half later with no return call yet, I called the office back and explained that I was going to the ER.  My mouth had started to tingle and itch on the inside.  I was breathing okay, still able to swallow, but with the hives now up to my bottom lip and this new symptom, I knew it was time for the ER as quickly as possible.  I tossed down a bena.dryl to hopefully buy me a little extra time and threw on my shoes.  As I was walking out the door, the nurse called and said Dr. E suspected that it was the PIO that I was reacting to, he’d call in a steroid dose pack, and that they were calling the local compounding pharmacy to switch me to a vaginal progesterone.

I arrived at the ER, was promptly ushered back to a room, and the nurse practitioner (NP) was checking in within minutes.  I explained the situation.  The NP said he’d call Dr. E to confer, but he planned on a large dose of IV steroids, more bena.dryl, a prophylactic albuterol breathing treatment and an epinephrine shot.  Dr. E agreed and the ER nurse came in, started my IV, hooked me up to a heart monitor (epinephrine can cause tachycardia, so I needed monitoring for a minimum of an hour after the shot) and gave all the meds.  It was the weirdest sensation.  The bena.dryl made me sleepy, but the albuterol and epi both made me feel like I’d drunk 12 cups of coffee jittery.  Somehow these were not mutually exclusive and happening simultaneously.

After a bit, the NP let me go with prescriptions for a steroid dose pack and an epi pen.  As the NP put it, the PIO was going to be in my system longer than the meds they’d given to combat the reaction, so while he was okay releasing me, he wanted to make sure I had access to epinephrine in an emergency.  He gave strict instructions to come back to the ER if I started reacting severely again or had to use the epi pen.  I was just glad to get released.

We went back out to see Arthur’s grandmother – it’s only a matter of time at this point – and be with the family after we’d picked up prescriptions.  I figured I could be puffy and feel cruddy in the car as well as on the couch at home, and Arthur’s grandmother is just an amazing person who I also wanted to get this last chance to see.  That turned out to be a good decision.

This morning, my eyes are still puffy and the hives are still a mild pink, but it’s infinitely better.  It’s a little hard not to feel a teeny bit bitter (because I don’t think this cycle worked, though it’s too early to get a definitive result, sigh) but I’m also a bit grateful this is happening at the end of my fertility treatments.  If it had happened on the first cycle out, it would have been incredibly difficult to work around for subsequent cycles.  As it is, it’s a very good thing we aren’t doing more treatments.

Because apparently, I’m officially allergic.

Here We Are

Seven years.

Seven medicated cycles.

One attempt at a medicated cycle, stopped on day one due to cyst.

Two fresh rounds of IVF.

Two FETs.

Six total embryos transferred between 2013-2019.

One natural pregnancy.

Two daughters born.

One big unknown.

It seems a bit fitting that in the same month I got the PCOS diagnosis back in 2012, we are wrapping up the last loose ends in 2019.  Same sunshine, same crisp air, same bright trees and dusty corn fields.  I wore space rocket socks both to commemorate the first all-female space walk and also because we are lifting off to journey to new places.

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Fertility treatments ended with my fourth and final transfer today.  It’s a weird feeling.  It’s like if my brain is a desk that’s usually stacked high with all manner of paperwork and other items, I just reached out, swiped everything off, and the whole thing is open and blank (there’s a huge mess on the floor, but the sorting is for another day).

I’m not going to pretend I’m not anxious – anxiety is kind of what I do.  I’ve been anxious that something would delay the start of the cycle, then anxious that something would happen to force me to restart the cycle next month, then anxious that the embryo wouldn’t thaw correctly, now anxious about a negative pregnancy test. But here we are, and no anxiety can take away from the fact that #6 (a euploid “fair” graded day 6 embryo that gives us around a 40% chance of live birth) is successfully transferred and we no longer have anything left in storage.  This is it.

Yesterday, after my brain spiraled into dark places, I put an old Fredrick Buechner quote on my letterboard:

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That’s my goal.  Whatever happens next, be not afraid.

…Go!

Well, I’m officially off and running on this final FET.  My start-cycle visit was Monday.

Back in June when I had my saline-infusion sonogram (SIS), Dr. E noted that my ovaries looked as though I had “mild” PCOS.  The “string of pearls” of small cysts that are one of the criteria for PCOS were evident.  I was ovulating based on seeing LH surges and having regular periods, but I knew that in SIS I had the cycle before I conceived M without medical assistance, my ovaries had shown no signs of the “string of pearls”.  I dug out my notes from that time and put myself back on the same medication/supplement regimen with a couple small tweaks (prior to this, I had been using lower doses of the medications/supplements that seemed to get me ovulating but obviously hadn’t totally cleared my ovaries of the cysts).  I hoped that with three to four months, perhaps my ovaries would fall in line.  I figured even if we were using the final frozen embryo as opposed to trying to conceive without medical assistance, the more in-line my hormones got, the better the chance for a good outcome.

I’m happy to say that when the ultrasound tech scanned my ovaries Monday, there were none of the little cysts.  My ovaries looked like normal, healthy ovaries.  It’s interesting – I had wondered if the cycle where M came along was a fluke, but it appears that possibly with the right combination of medications, I may be able to put my PCOS into a sort of remission.  I don’t know if that’s reality, since getting proof would mean serial ultrasounds/blood draws, but it’s certainly hopeful.

I took my first del.estrogen shot Monday night, and that is the thickest medication I’ve ever seen.  As someone who has injected an awful lot of oil-based meds into my rear, that’s saying something.  Not much fun, but at least it’s small amounts of oil (0.3 mL per dose) and only every 4th day.  I started the dexa.methasone Monday night as well.  So far, I’ve been able to sleep (steroids tend to give me insomnia) but I’m only two doses in, so we’ll see.

Next ultrasound/bloodwork is scheduled for Oct. 17 with transfer now tentatively scheduled for Oct. 23.

Fingers crossed.

Ready, Set…

Last week, I called the RE’s office about a few assorted matters since the FET visits and meds should start fairly shortly (within the next week or so).  First up was my flu shot.  Due to my job, it’s not so much a question of if I’ll get exposed to influenza, it’s a matter of when.  As I’d read over the medication instructions again, it occurred to me that the steroids – designed to weaken the immune system to provide a better chance at implantation for the embryo – might cause my body not to form much of an immune response to the vaccination.

Based on my period-tracking app (which is fairly accurate for me), my cycle is set to commence this weekend, which also concerned me.  Weekends are the worst time to have to start things or call medical offices in general, not to mention I work on the weekends.  I wanted to make sure everything was squared away and I knew who to call and what to expect.

Turned out to be a good thing I checked in.  Dr. E confirmed that the flu shot did need to be obtained before I started the steroids and hopefully in enough time to give my immune system the time to build the antibodies.  That meant the day before leaving on a major trip I was calling pharmacies to see where I could get one.  The one that had vaccine was the one not in my insurance network, so I paid about $41 for something I usually get for free.  Add it onto my running infertility tab, I guess.  Better than getting sick later – if this cycle works, I’m on the steroids until I’m 8 weeks along, which puts me into December, aka flu season, based on the best information I have (the dark part of my mind is grumbling that this is ridiculously optimistic, why would I think this cycle is going to work at all?).

It also transpired that the local office isn’t staffed with a nurse on the weekends currently, just a lab tech and ultrasound tech, so start cycle visits have to go to the main office (around 2 hours away) on Saturday/Sunday.  “I can’t do that,” I said.  The nurse – who knows me well and was at the office through 2013-2014 when I was doing the majority of my cycles and IVF – said that since I know the protocol, can do my injections, and understand when to call if something gets strange, she could do my start cycle visit the week before my period is projected to start and then she’d leave word with the office that I could be seen locally for the ultrasound + blood work.

I’m not sure if I’m comforted by the fact that I knew to call in and check the finer details (because there’s always something) or a little unnerved that I’ve spent this much time doing ART.

Anyway, I had my start cycle visit Tuesday.  That went well, I nailed down the details of exactly which office to call at any point in the weekend if my period starts, and we mapped out as much of the cycle as possible based on my app.  At this point, it’s just a waiting game.

Current Cycle Status

Content note: Final FET feelings + already present kids mentioned.

Well, this cycle is finally starting to become real.  I’ve been going back and forth with the RE’s office to start pricing out drugs and nail down the slippery little details that I’ve discovered can really derail things quickly.  I confirmed that they still open at the same time they used to, that now they do Sunday appointments in my city (it used to be that they only took Sunday checks about 1.5-2 hours away at the main office), and got copies of all the paperwork.  When my period starts this month, I’ll call, get the prescriptions, and order the drugs in preparation for next month, thus outlaying the first actual cash in this endeavor.

I’ve noticed that I’m starting to have a more reasonable reaction to the prices again.  Maybe it’s that I’ve been out of the ART world long enough or that we’ve spent money on other things in the meantime, but I’m keenly aware that what we are spending on this cycle is going to be right around what we paid for our entire upstairs flooring in a high end, water resistant laminate including installation.  I remember when I paid for the flooring and called Arthur to give him the final bill remarking that while it wasn’t cheap, it was about what we’d paid for FET cycle past and – salient point – we weren’t paying for a chance we’d get a floor, we were actually going to receive a floor.

That last sort of sums up the mixed feelings I have bidding farewell to the RE’s office and ART.  I’m really grateful for the fact that IVF brought us older daughter and also cognizant of the immense emotional and financial costs that went into all the cycles.  One of the things that’s hard about ART and IVF is that beyond picking a doctor/office/lab and following the protocol, there’s really very little I could control in the cycle.  I was at once expecting my first IVF to fail (because I’m a defensive pessimist) and also completely shocked when I miscarried (apparently there’s some underlying optimism there after all).  I’ve known for a long time – working in the medical field – that modern medicine as a whole is extraordinarily powerful in some ways/instances, but also falls badly short far more often than some of the glowing articles and incredible stories would have people realize.  Even knowing this, I found it hard to stack up the hopes I had with the grittier, less successful realities.

It’s the end of ART for us.  One way or the other.  I’m almost 37 and it’s time.  Whether or not we see if something breaks loose on our own if the cycle fails is something we’re very undecided on.  Met.formin really does appear to regulate my cycles but in my late 30s, other concerns such as higher miscarriage rates are starting to tick up (and that’s making the enormous presumption that I’d get pregnant at all – certainly not a given with my history).  I’m not going to lie, I have a little bit of the ache these days at the thought of being done, I’d really love it if the cycle worked out, but I can’t tell if that’s a deep, ongoing thing or if it’s happening because I’m immersed in getting ready to try to get pregnant with the FET and if the beta is negative will dissipate with some time.  Despite the occasional achiness, I’m grateful for where we are now.  I have no doubt that regardless of outcomes, life is going to go on and I believe it’s going to be good.

I Had Forgotten The Rules of RE Office Phone Tag…

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Watched Pot Theorem: The more you stare at your cell phone after leaving a message, the less likely it is to ring.

Murphy’s Law of Returned Calls: The phone will ring once you have stopped watching/procrastinating and gotten into a project where you can’t reach the phone or a pen easily.

Public Places Corollary: The more public the space you are in when the return call comes, the more likely you are to have to discuss your menstrual cycle or reproductive organs in detail.

This post is a part of Microblog Mondays.  If you want more, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

Clear

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I went for my saline infusion sonogram (SIS) today.  Walking into the building, I could feel my anxiety almost immediately ratchet up.  I mean, I think my RE’s great, the staff at the office has always been fantastic, but it’s the site of more than a few Really Bad Days so my body/mind seems to have a fairly automatic response to walking through the doors.

I checked in, waited, and was ushered through to the ultrasound room.  Changed.  Dr. E came in and, seeing my reader, asked what I was reading.  “Dr. Deirdre Cooper Owen’s book Medical Bondage, about James Marion Sims, the origins of American gynecology, and the way the use of Black enslaved women and Irish immigrant women as test subjects has influenced pervasive myths about pain tolerance and such that are still coming up today,” I responded*.

Never let it be said that I am not honest (and exceptionally bad at making small talk).

Dr. E thankfully engaged the topic and so that’s a good bit of what we talked about while I had my SIS.

As far as results, things look fine.  My ovaries are mildly polycystic (the usual) and my uterus is clear.  Now I get to wait for September.

*It’s an excellent book so far – if a hard read – that absolutely deserves a serious discussion of its own.  I read about it on NPR’s Code Switch Book Club and picked it up because anything that talks about medical biases regarding race and sex, especially ones that effect perception of pain and treatment, is an extremely relevant read professionally and personally.  

This post is a part of Microblog Mondays – if you want to read more, head on over to Stirrup Queens.  Thanks to Mel for originating and hosting.

The Left Overs

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Last week I finally bit the bullet and made what I plan to be the first in the final series of appointments with my RE, hopefully culminating in a final embryo transfer around early-mid October 2019.  I mean, my RE is a good doctor and I like him, but I truly won’t be sorry to see the end of treatments and the clinic and all the attendant stuff.  I’m looking forward to moving on and coming to end of the infertility journey.

One part of infertility, however, isn’t going to be over anytime soon.  The reason I wound up at a fertility clinic in the first place, PCOS, still factors into my life, health, and daily living.

This is one of the parts of infertility that I really hadn’t considered much when I was in the trenches, mostly because in the trenches, it’s a day-to-day, minute-to-minute battle.  At this point, however, I’ve got a bit of breathing room to consider the future and that future continues to include PCOS.

And PCOS…sucks.

Mostly, it raises my risk of diabetes along with a number of other conditions, which means monitoring and care to ensure that I remain as healthy as possible.  For me, this means a daily dose of met.formin.  While it doesn’t work for all PCOS women, for me, it’s a miracle drug.  When my second RE put me on it prior to my second fresh IVF cycle because at that point, we were throwing everything reasonably possible at the infertility, I noticed my cycles regulated a bit and we got better egg retrieval and embryos.  After I gave birth to my first daughter, I went back on it to attempt to control the PCOS and boost my milk production, then continued on it and was surprised when, over several months, my acne abated and my cycles regulated.  Because PCOS is one of the big wild card conditions of infertility (some PCOS women have a terrible time conceiving while others, surprisingly, don’t have much issue at all), we were overjoyed when this led to our second daughter.

I managed without met.formin until I stopped nursing/pumping for my second daughter, but at that point, the PCOS symptoms returned with a vengeance – acne, wonky cycles, the whole nine yards.  I called my OB/GYN who was fine with putting me back on the met.formin and things have calmed down since.

I’m fortunate when it comes to PCOS because I have a fairly reliable external indicator about whether or not the PCOS is under control: acne.  If I’m breaking out massively, generally, I have cysts on my ovaries and the attendant issues.  I’m also fortunate that (so far) I’ve been able to find treatments that abate the symptoms considerably.

Despite the fact that my OB/GYN is good and I can somewhat see how well controlled my PCOS is, I know that I need a good primary care provider, especially since I’ll be able to stop seeing my RE (who has helped with managing my PCOS and been my back-up with that for years now).  At the moment, I’m starting to work on searching for the right doctor.  PCOS isn’t ending just because my infertility is resolving.

This post is a part of Microblog Mondays.  If you want more, head over to Stirrup Queens’ blog!  Thanks to Mel for originating and hosting.