Truly Amazing

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I keep seeing a lot of graphics and such popping up about doctors’ and nurses’ service right now, which is lovely.  I’m happy to see more and more acknowledgement of hospital/nursing home housekeepers and laundry as well as cafeteria/food service, incredibly important and often very unseen groups of workers.  They work beyond hard and a huge amount of infection control in facilities comes down to what they do on a daily basis.

One group of workers I’ve seen overlooked at times recently is the respiratory therapists (RTs).

I’ve been incredibly privileged to work with the most amazing RTs over the years, both from a professional standpoint and from a personal one.  They’re the ones adjusting ventilator settings, checking endotracheal tubes, monitoring oxygen settings, checking tracheostomies, setting up hi-flow systems, and doing breathing treatments – plus about a million other things.  They were the ones in NICU who were adjusting c-pap, checking and adjusting E’s hi-flow settings, finding flow meters that could give the tiniest liter flows as we weaned her off, and generally checking her ability to oxygenate properly.

In short, they are awesome.  Absolutely necessary and totally key in the fight against a virus that is hugely a respiratory issue.  Really, there are not enough thanks for everything they do.

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

The Birds in the Backyard

Having lived in this general region for the majority of my life, I tend to think I’m fairly familiar with most of the wildlife.  When we lived next to a lake, I used to watch for the swans when I’d go out for runs.  I often saw squirrels (we had black squirrels along with the more common red/grey ones) or geese.  Once I got to see several bald eagles in the trees.  I’ve seen owls and deer and fawns.

On Saturday, I had just gotten home from work and was a bit surprised to find the girls staring out the window.  They had gotten a couple of birdseed feeders in the shapes of bells for Christmas and Arthur had helped to string one up in the tree a week or two earlier.  I hadn’t seen many birds and wondered if we just had the wrong mix of seeds.

That day, however, there were a whole bunch of birds pecking around the bell and tree.  A gorgeous ladder-back woodpecker with a bright red head scuttled up and down the branches.  There was a cardinal and chickadees and a sparrow or two.  There was also another bird I couldn’t identify.  It looked grayish but had an orange breast and was too small to be a robin.

A couple of the grayish/orange birds flew into the tree and all of a sudden, with the angle change, I knew what they were.  “Those are bluebirds!” I exclaimed.

I had no idea that any lived in our area.  I’ve seen pictures (including the famous “grumpy bluebird” one) but I’d never actually seen one in real life.  My MIL later identified them as Eastern Bluebirds.

Terrible pictures, but there they are!

Really rather fun to get to see them and probably going to have to figure out what food to put out there for them as it’s quite cold right now.  I’m hoping they’ll come back sometime!

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.

 

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.

“And”

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Content note: pregnancy, children, loss – none recent

This weekend, we tore up some of the scrotty grass that’s never grown well next to our patio in the back and put in hostas.  I pulled out the dead hydrangeas from the back bed and planted shade loving coral bells.  We went to visit college friends and as we sat, I had one of those moments that might be called transcendent or even holy, where for just a second, everything was right with the world and good.

The new life, both literal and figurative, was all around us.

I came home, checked my calendar, and realized that it’s not all that much longer until my saline infusion sonogram for this final transfer.  And before I knew it, this morning I was ugly crying, the one that isn’t a couple of crystal tears decorously sliding down the cheeks, but the red-faced, sobbing, snotty Kleenex filled kind.

That’s life, though, isn’t it?  At least after a certain point?  Where the most extraordinary exists among the prosaic of every day and the deepest, darkest muck that can be dragged up?

I am so incredibly, amazingly thankful for my girls.  And I am so terribly sad that I never got to meet the three that died and were miscarried early, long before they truly lived.

I honor the truly ordinary, uneventful pregnancy I got the immense privilege of experiencing.  And I grieve the long weeks of waiting, of fertility treatments and IVF, of hope mingled with sadness, of ultimately having three others over far too early.

I get the loveliness of watching my older daughter survive and now thrive.  And I mourn that she lost the last weeks in pregnancy that she should have had, that she went through so many painful procedures, that we were separated by plexiglass walls and nights apart at the beginning of her life.

I can’t even express how much gratitude I have to see the girls treasuring each other and also fighting – as siblings do.  And I can feel my heart breaking again and again and again that my sibling is gone, that a person I held as he came into the world left it long before me in such a terrible, senseless way.

I hold my dear ones close, their precious selves tangible and messy and wonderful and alive.  And I cry remembering the unnatural coldness of my brother’s still face, the benediction of viewing him in death, the slight smear of blood that transferred to my hand when I put it on his cheek.

I am fiercely glad for my marriage and the love my husband and I get to share every day.  And I mourn the things we have both broken over the years, some of which are still being repaired.

I am grateful for the chance to complete this final cycle, to close out this particular road, to know that no matter the outcome, I am truly fortunate and ready to live this good life I have.  And I am anxious, struggling with the months of waiting in the lead-up, dreading some painful procedures, and worried about the potential for more hurt.

For the last several months, I’ve been veering back and forth between the extremes, saying how I’m fine (true) and FINE – F*cked Up, Insecure, Neurotic, and Egotistical * – (also true).   It doesn’t sum up neatly, the pros and cons on the paper don’t cancel each other out.  They’re all true, all a part of what poet Mary Oliver termed “your one wild and precious life”.

I am, without a doubt, in today’s parlance, a hot mess these days.

And…it’s an absolutely beautiful mess as well.

*credit to Louise Penny

This post is a part of Microblog Monday.  If you want to read more or add your own, please head over to Stirrup Queens’ blog.  Thanks to Mel for originating and hosting.  

Ticket In Hand

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We had our RE consult today and it did not take me long to realize that in the fast-moving world of reproductive endocrinology, I’m definitely a blast from the past.

When I did my first FET cycle in early 2014, I used Lup.ron, oral estrogen, PIO, baby aspirin, a short burst of Medrol, and valium for the transfer.  Today, the FET we’ll undertake in September/October will involve injected estrogen every four days, PIO twice a day (!), dexamethasone, baby aspirin, medrol, and predisone.

My response: “I JUST got feeling back in all the areas of my butt and now PIO is TWICE A DAY?!”

Apparently, this protocol results in much higher implantation rates.  Dr. E explained that there’s too much variability with oral estrogen to be comfortable – apparently some women really struggle to get levels high enough even with high doses – but with the injections, it’s been much more consistent.  The steroids lower the immune system a bit to allow the embryo to implant and the different types plus longer dose periods than before seem to really help this process more effectively.  No more valium for transfer either.  Two days of taking it easy, like before.

I asked how likely the blastocyst we have in storage was to thaw properly and Dr. E told us since it’s frozen with the newer cryopreservation methods, it’s around 98% certain that we’ll have a transfer.

I am…a little overwhelmed, to be honest.  Not so much by the protocol itself (though it certainly is different than any other fertility protocol I’ve undertaken) but simply by the fact that this is it.  As weird and f—ed up as this sounds, the RE’s office and fertility treatments and reproduction (or lack thereof) have been this huge part of my life for about seven years.  Whether or not this FET or anything else results in a pregnancy, my reproductive years are coming to a close.

I won’t miss the worry, the miscarriages, the fertility treatments, the incredible sadness of failed cycles, the two-week wait, or any of that stuff.  Infertility, high-risk pregnancy, loss, and NICU inflicted real wounds that are still healing and scars that still ache at times.

But there were silver linings that I couldn’t appreciate in the trenches.  Dealing with infertility and the associated complications also moved me from being someone who looked over her shoulder for another person when someone asked for an adult to someone who says “here, me, I’m an adult”.  I can battle with a ferocity I didn’t know was possible and also know when it’s time to walk away from a fight.  I know how to talk to an insurance company, how to marshal my resources, and who to call.

It’s more that I’m letting go of something that consumed vast amounts of time, resources, emotions, and despite the fact that this is, inherently, not a bad thing, it’s a change and a door closing.  It’s moving into an entirely different landscape – where I won’t chart my cycle, pee on OPKs, alternately (depending on where I am in an attempt to get pregnant) hope for or dread my period, or take pregnancy tests.  I’ll get rid of the maternity clothes and the baby stuff.  Labor and Delivery will go back to being a department with no more significance to me than Endoscopy or Medical-Surgical.  I’ll change into whatever lies ahead and deal with it, hopefully gracefully.

It’s strange, though, being here.  It’s like waiting in an airport, ticket in hand, and not knowing exactly where I’m going next or how many transfers or bits of lost luggage, but knowing that my flight will depart soon for somewhere.

This post has been a part of Microblog Mondays.  If you want more, please visit Stirrup Queens‘ blog.  Thanks to Mel for originating and hosting.

A Different Mindset

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One of my favorite morning activities involves reading book related topics on NPR.  It’s fun to figure out what to look for at the library and discover new reads that might typically fall outside of my usual bailiwick.

The other morning, I clicked over to an author interview where the headline read “What It’s Like to be Held Hostage by Somali Pirates for 2 ½ Years” (I mean, how could I not click over with a headline like that?).  As I was reading, I came across this statement by the author of the book, Michael Scott Moore:

“On his line ‘Hope is like heroin to a hostage, and it can be just as destructive’

Hope was a cycle, and after a while, it became a destructive cycle. People say, “Well, how did you hang onto hope for two years and eight months?” And the fact is: I didn’t. I learned to live without hope. So having your hopes raised and then dashed every two weeks, which is what the guards tried to do — they would say, “Michael, don’t worry, you’re going to be out in two weeks, or a month” or something — was devastating. It was actually no way to live. And so I had to find a different level of existing. And it turns out you can live without hope. … Any Hallmark-like quotes to the contrary are wrong.

Well, hope and despair are just two ways of approaching the future. I don’t know which philosopher I’m paraphrasing, I think maybe Sartre, but — those are just two mindsets toward an uncertain future. And if you would recognize that, and simply don’t think forward toward the future, and don’t insist on a rosy outlook for the next couple of weeks or months or years, then you can live in the moment. And that’s what I had to learn to do. I would have snapped if I had done it any other way.”

It really spoke to me.  While infertility is, obviously, not the same thing as being kidnapped by pirates, what the author had to say there about hope made so much sense.  That cycle of having hopes raised, then dashed, then raised is a huge part of what makes infertility so tough to deal with emotionally.  I love the idea that, contrary to conventional ‘wisdom’, there’s another way to consider one’s circumstances.

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

How Do You Say ‘Thank You’ to Someone You Never Met?

When I’d go for my daily run as I was going through infertility, I had one song on my i-pod that I generally slotted toward the end of my playlist.

Well, I won’t back down
No, I won’t back down
You can stand me up at the gates of hell
But I won’t back down

No, I’ll stand my ground
Won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground

I always knew I couldn’t control the outcomes of my cycles or whether or not we ultimately had a baby.  I couldn’t control the suckitude of cancelled cycles, BFNs, or the losses.  Most days, it felt like nothing was in my control.

Well I know what’s right
I got just one life
In a world that keeps on pushin’ me around
I’ll stand my ground

I never heard the song as a “don’t give up on treatment” but rather, not to give up on life when some days, it was hard to get up in the mornings.  The song always rallied me to remember that someday, somewhere, we would make it through.  There was a good life after infertility, whether or not we ultimately had children.

And I won’t back down
(I won’t back down)
Hey, baby, there ain’t no easy way out
(I won’t back down)
Hey, I will stand my ground
And I won’t back down

I listened to that song through so many bad moments – diagnoses, miscarriages, cycles, job losses, hospitalization, NICU, my brother’s death, post-NICU – and it always gave me just that little bit of strength I so often needed to say “I am struggling.  But I will find a way through.  Maybe not the way I envisioned or hoped.  Maybe a different way.  But a way”.  Still does, honestly.

As I was browsing news sites the other day, I heard that one of the song’s writers and singer – Tom Petty – had died.  I’m sad and sorry he’s gone.  But what do you say about someone you never met or actually knew?

I guess, just this:

Thank you for the song, Tom Petty.  Thank you.

Lyrics to “I Won’t Back Down” by Tom Petty/Jeff Lynne. 

A Long Time Coming

In the weeks and then months after E was born, we spent a lot of time at the hospital, first in NICU, then going back and forth to doctor’s appointments and tests.  Every time I made the trip to the hospital, the route took me through a nature preserve marsh area.  I’d often spot hawks, great blue herons, or swans.

One day, I saw a flock of white birds perched in the trees and logs.  At first, I wondered if they were seagulls or more swans.  They were quite a long way from the road, so hard to make out, but as I got a better look, I realized that a couple of them were wading in the water.  They were storks.  A whole friggin’ cloud of storks.  This realization elicited a rather dark-humored chuckle from me, given the association of storks with babies.

“Really?!”  I muttered incredulously to myself.  “This is where y’all have been hanging out all these years, huh?”

I continued to see the storks all summer, and the next spring, I kept an eye out for them.  Sure enough, the cloud of storks again descended on the marsh.  I would watch for them as I went back and forth to my OB appointments in those early, tenuous days of my pregnancy with M.  I saw them as I headed in with bleeding.  I saw them after good ultrasounds.  I got to the point where I was almost superstitious about it – if I saw the storks, everything was probably okay.

This summer, I waited to see the storks.  While I’ve seen a few of them on and off, it’s nothing like the last two years.  At most, I’ve seen three or four at a time, whereas in previous years, I’d see ten or fifteen easily.  I’m completely aware that this has something to do with changes in the migratory pattern of the birds, but it’s a sort of strange coincidence how it has almost perfectly dovetailed with the volume of my anxieties and feelings about infertility.

When I was first diagnosed with infertility, the one thing I wanted to know was whether or not the acute distress of not knowing and the horrible limbo of waiting would ever end.  I figured intellectually it would – and multiple bloggers/authors in this community with every manner of outcome testified to that – but there were days it felt emotionally like we might remain in the undecided, unresolved ether forever.  In some ways, that was one of the hardest parts of fertility treatment for me.  I could deal with the physical side effects, but the waits – waiting to start cycles, waiting for lab results, waiting for paychecks to pay for cycles, waiting for embryo reports, waiting for pregnancy tests, waiting for ultrasounds, waiting on those long weeks of hospital bedrest to see if E would survive – stressed me enormously.

For a long time, infertility has been a wound that has stubbornly refused to heal or even really scab over.  We still have two frozen embryos, and with my history of subchorionic hematomas and the concerns with whether or not something in the IVF process possibly exacerbated the first one with E, there are some loose ends yet.  Lately, though, I’ve noticed that while I’m not quite resolved, I’m starting to see that eventuality on the horizon.