Wide Open Spaces

microblog_mondays

When Arthur called an end to our efforts on trying to conceive, I found myself in the midst of a bit of an identity crisis.  I’m not sure why this surprised me – I’ve spent the better part of a decade trying to get pregnant and then stay pregnant in ways that were invasive, emotional, time-consuming, and expensive.  One of the things that happened along the way between infertility and NICU was that other parts of life fell by the wayside.  It’s hard to make plans or get involved in other activities when you’re at the whims of the RE’s office or in quarantine.

Time to begin the small steps of moving forward.

~*~

To that end, I decided to rip off the band-aid last week and start the process of cleaning out all the pregnancy/baby items cluttering the basement.  I don’t want to start the new year with that particular task looming large.

I started with the hardest part: the maternity clothes.  I fought so hard to get to the point where I could wear them in my fourth pregnancy – after three pregnancies without much outward sign.  I tossed them into totes and tubs and took them up to the consignment store where I watched as the employees evaluated and sorted.  “Donate whatever you don’t take,” I told them.  I walked out with the empty containers and some cash.  I made it to the car before bursting into tears.

~*~

I recently was invited to participate in an advanced adult choir.  For years, I’ve listened to recordings of British composer and choir master John Rutter directing the Cambridge Singers in both his own compositions and other choral classics.  It has long been a dream of mine to get to sing some of the music on those albums, which are full of tricky a cappella pieces as well as what I’ve termed the “floating sopranos” – the top part and descants just lightly flow over the top of the other voices, impossibly soft, controlled, and high.  This is my chance to do just that.

It’s a reminder that there are other dreams to follow and so much beyond the narrow confines of trying to conceive.

Choral music

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

The Stories We Tell Ourselves

After the FET didn’t take, Arthur and I had the usual picking up of the pieces and trying to reformulate them into something that resembles a whole.  As always, this involves a fair number of discussions.  Most of the time, even when we’ve disagreed on specifics or details, we’ve generally come to a compromise that both of us are reasonably okay with going forward.  If we’re not on the same page, we’re usually in the same book, as it were.

This time, it turned out, we were decidedly in different books.

We both were in wholehearted agreement that we’re done with ART, but beyond that was where things broke down quickly.  I was on team “let’s see where the chips fall for at least a few months and then move on if nothing happens”.  Arthur surprised me by declaring that he was on team “Done.”

Well, there’s really no compromise possible on something like that – either we’re open to the possibility of another child or we’re not.  The odds would not be in our favor on conceiving and/or carrying to live birth at this point, but it’s possible.

After a several skirmishes leading to outright arguments, the short story is the only realistic conclusion for us has been reached: we’re done.

~*~

I’m not going to pretend that I’m at peace with the whole thing or deny that a part of me is still harboring a small hope that Arthur might change his mind in the next month or so, but I also can’t say I don’t see Arthur’s point in this whole mess.  It’s been a long 7+ years and honestly, we’re both exhausted, physically and emotionally.  ART demands an amazing amount of energy.  Beyond that, I’ve been doing what amounts to a rotating shift for 4+ years now which messes up my sleep cycle (2 consecutive night shifts at work, then up during the day the rest of the week) and while 37 is by no means old, it’s also not the same as being in my 20s.  Arthur and I are often like ships passing in the night since he works a more traditional 5-day a week 8-5 job.  E goes to kindergarten in the fall of 2020, heralding a new phase in life.  M will probably start another day in preschool at that point.

Some of it, though, I think, is the narrative of “try harder” still echoes in my head.  Part of me feels like I’m giving up.  Like if I just kept pushing, trying, hoping, I could somehow still the voice that tells me that it’s possible and I have to do just this one more thing.  It’s the d*mn shadow that I’ve battled throughout the whole process – the one that urges scorched earth tactics, that says that until everything is completely destroyed, it’s not enough.

It’s a liar.

I know that.  I know that.  I’ve spilled volumes of word processor “ink” on this myth myself and read plenty of other essays/blog posts/books that urge the setting of boundaries and the importance of maintaining mental, physical, and relationship health.  It would have been enough no matter how the whole thing ended or at what point we stopped.

And yet, it’s surprisingly hard to push back from the table and say “no longer”.

~*~

I can’t change the facts, but I have been working on re-framing the story I tell myself.

In the last few weeks, the story in my head has gone something like this: I could try harder.  We could achieve this, even in spite of my history.  We could overcome the hardships of possible miscarriage, a geriatric pregnancy, and a failed FET cycle if I was tough enough to keep going.

Instead, I’m trying this on for size: Infertility sucks.  We fought incredibly hard to the absolute best of our ability.  We are beyond fortunate in so many ways.  Setting boundaries and respecting limits are good things.  Time to heal the wounds and move forward enjoying life.

I’ve written about this before, but I keep coming back to author Bill Bryson’s ending to A Walk in the Woods: Rediscovering America on the Appalachian Trail.  Near the end, Bryson has a conversation with his companion Katz.  Bryson is a bit disappointed that they didn’t make it as far hiking as he envisioned.  Katz, on the other hand, has an entirely different perspective:

‘“Anyway, we did it,” Katz said at last, looking up. He noted my quizzical expression.
“Hiked Maine, I mean.”
I looked at him. “Stephen, we didn’t even see Mount Katahdin.”
He dismissed this as a petty quibble. “Another mountain,” he said. “How many do you need to see, Bryson?”
I snorted a small laugh. “Well, that’s one way of looking at it.”
“It’s the only way of looking at it,” Katz went on and quite earnestly. “As far as I’m concerned, I hiked the Appalachian Trail. I hiked it in snow and I hiked it in heat. I hiked it in the South and I hiked in the North. I hiked it till my feet bled. I hiked the Appalachian Trail, Bryson.”
“We missed out a lot of it, you know.”
“Details,” Katz sniffed.’

 

We hiked the darned trail through infertility.  We hiked it through snow and heat (especially not fun when a cycle demanded being at the RE’s office, then an hour away over icy roads).  We hiked it through cancelled cycles and miscarriages and negative pregnancy tests.  We hiked it through bills and insurance fights.  We hiked it through joy and devastation.  We hiked it through an allergic reaction and Lupron and injection after injection.  We hiked it through ER visits and SCHs and c-sections and a long hospital stay and NICU.  We were enough all along, both seven years ago and now, no matter how this thing ended.

That’s the story I’m going to work to keep telling.

 

Baking

Flour.  Salt.  Yeast.  Water.

I found myself pulling out the big stoneware bowl today.  Measuring, stirring, watching as all of it blends into crumbs and then into something more cohesive.  Turning the dough onto the counter, sprinkling it with dusting more of flour, starting to work it, pressing my fingers deep into the sticky lump.

Knead.  Fold.  Turn.  Repeat.

It’s a sort of miracle how the dough stretches and becomes elastic, fragrant with the yeast and the rosemary I added for flavor.  Kneading is a soothing rhythm, something I’ve done since childhood when I first learned the secrets of baking.

I suspect there’s a reason so many cultural and religious traditions center around food.

My father-in-law called yesterday to let us know that Arthur’s grandmother passed away.  We saw her at the beginning of October.  Even at 101, she was steady, sharp, and engaged.  It was a gorgeous day, we all went for a walk around the swan pond, she gave the kids ice cream, candy, and cookies, and we had a lovely visit.  The day before, I’d had my start-cycle appointment.  The day was bright with literal sunshine and a lot of hope.

One of the things I’ve grown to detest about the early stages of grief is the howling numbness, the void where something once belonged.  The holes, as it gets further away, don’t disappear, but there’s something around them, substance that grows into something steadier.

I can’t do anything particularly practical other than basic adulting right now, because it’s not mine to do, it’s already done, I’m physically exhausted, or I just don’t want to today.  We wait for word on the funeral arrangements.  I think about the pile of baby stuff in the basement.

So, I’m baking bread.  Because it’s what I can do.

I anoint the dough with oil.  Throw it back in the bowl, cover it, put it in a warm spot.

Rest.

Rise.

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.

2019-10-23 15.28.34

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:

2019-10-22 14.10.52

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