A Different Mindset

microblog_mondays

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.

Advertisements

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.

A Great Aunt Indeed

One mid-February evening as I was getting ready for work, my phone rang.  Arthur answered it and I could tell immediately by the tone of his voice that it was not good news.  My mind jumped immediately to my grandfathers, both elderly and not in the best health.  However, my mother told me that the news came from an unexpected place: my great-aunt J had died that afternoon.

While Aunt J had experienced several serious bouts of illness in the past year, she had recovered and was doing reasonably well at that point.  She had even gone out with my aunt for a drive earlier in the week and my cousin had visited with her the day before.  Apparently, Aunt J had been resting in her room, pushed her call light, and by the time the staff responded a minute or two later, she was gone.  It was quick and by all accounts, peaceful.

~*~

Aunt J was my maternal grandfather’s older sister.  I remember very clearly going to Columbus most years for the Fourth of July holiday to see my grandparents and her.  Since Aunt J’s birthday was on July 2, she always hosted a party for the assembled family and friends.  As the oldest cousin, I was the first to get to accompany her on trips to Star Beacon, a treasure trove for a child.  I got to help her select items such as small Styrofoam gliders that looked like airplanes and went much further than homemade paper airplanes, jelly bracelets, poppers (little plastic pieces that could be turned inside out, set down, and then jumped into the air with a “pop”), and other similar bits for the goody bags.  Aunt J always asked me to consider the smaller cousins or items that might amuse the adult guests as well as the children.  It was my first lesson in hospitality and thinking about others.

Aunt J was always ready with fun surprises, including everything from climbing walls to a simple trip to the local park.  She was the first in a long day to suggest a break for rest or food when one of us cousins got cranky, making sure she cared for our physical needs.  We always knew Aunt J took a nap herself in the afternoon, letting us know by example that it was okay to slow down a bit and recover.  She also helped support me during nursing school in many different ways.  It’s thanks to her that I stuck with school on the really awful days, and I am so grateful for that.

In so many ways, more than I can possibly list here, she taught me how to “adult”.

Beyond the ways in which I knew her as an aunt, Aunt J had a very full life.  With a degree in Biological Sciences, she worked in the labs at Ohio State for the College of Medicine, Department of Surgery, and clinical chemistry.   She traveled behind the Iron Curtain in the 1960s.  Aunt J also made many, many friends over the years and was active at church, writing down the names of newcomers so she would remember them if and when they returned.  Aunt J also did a great deal of volunteering with the library and other organizations.

In 2007, after having lived in Columbus most of her adult life, Aunt J picked up and moved to Pennsylvania, near one of my mother’s sisters.  When I asked her why she’d move so far away, Aunt J said she was ready for another adventure.  She was always up for a challenge and excited to meet new people.

~*~

It’s also worth noting here that Aunt J never married and did not have children.  This was the other way she taught me by her example: that a life without having children could be immensely well-lived.  As much as the infertility was horrible, I also had a role model for a life outside of the nuclear family structure.

~*~

My mother told me about Aunt J’s memorial service, held in mid-March.  All of her five nieces attended.  Several friends from Columbus made the trip out to Pennsylvania.  I wanted to go very much, but it was simply impossible given the timing.  A friend Aunt J had made after she moved delivered one of the eulogies.  There is no doubt that this extraordinary woman had made an enormous impact and touched many lives.

It was my great privilege to know and love Aunt J.

In Which A Break Turned Out To Be Longer Than I Anticipated

Content note: Pregnancy mentioned

I didn’t set out to take a writing hiatus, but thanks to, well, life, that’s exactly what happened.  Of course, once the hiatus starts, it becomes harder and harder to go back. Where do I even start?

It has, indeed, been a full couple of months.  School has been busy, so perhaps it’s not so much a true writing hiatus as a blogging hiatus as I’ve written a fair amount towards that overarching project of BSN work.  My daughter had a couple of minor surgeries that thankfully went well, but one of which required several all-day trips in a relatively short time period to see a specialist out of town.  Arthur and I both blanched at the horrible election results.  We’ve lived under Pence for the last four years and to say that we’re worried and chagrined would be a gross understatement.  My husband’s work got busy and I changed my job position as well.  As of December 31, I crossed 28 weeks and 5 days pregnant, making me – out of four pregnancies – the furthest along I’ve ever been.  An anatomy scan at 18 weeks showed no abnormalities and that the baby is a little girl.

In many ways, we’re transitioning into a relatively good place family-wise.  Out of the normal has been our default setting for so long – starting with infertility and progressing to miscarriage, job losses, a high-risk pregnancy, PPROM, preterm birth and my brother’s death – that it’s almost a novelty to sit back and just breathe for the first time in about four years.

Sometimes I almost forget that a lot of people in real life we come in contact with these days don’t know the story since we moved in the midst of it and then spent a year in quarantine to let E’s premature immune system develop.  By the time we came out of hibernation, E looked a lot less premature (small, but not abnormally so), didn’t have her wires from the monitor any more, we weren’t in the midst of infertility treatment and then had a welcome, spontaneous pregnancy.  Recently, we were at church, going over future plans for the congregation and I objected to one point that talked a lot about “families with children”.  Which of course, seemed odd given that we are “family with children”.

“What you don’t see,” I explained, “is that we almost didn’t have children.  We did several rounds of fertility treatments and then IVF and had miscarriages.  My water broke at 21 weeks and by almost any calculation of odds, E wasn’t going to survive.  By that time, we were financially tapped out, emotionally exhausted, and if E hadn’t lived, we wouldn’t have had the ability to keep trying or pursue adoption.  We would have been a family of two.”  It heartens me that in that group of people I was talking to, everyone was kind, respectful and interested in being inclusive of family structures outside of the nuclear.

Another moment occurred when we went down to witness my niece and nephew’s dedication ceremony.  As all the parents and adorably dressed babies walked out onto the stage, the pastor briefly talked about the ceremony and then gestured to a white rose placed in the front.  He explained that this was in honor of those who had lost children, struggled with infertility, and for whom this was not a joyous or easy occasion.  While communities – religious or otherwise – still have a long way to go towards true, full inclusion and integration of those who struggle with infertility, do not have children, or do not have the families they longed for, such a gesture was a welcome sign that perhaps someday those changes may come with work and determination.

At these moments, I found myself almost in tears both times.  Certain aspects of infertility are slipping into the past for me and yet, others are still so much present in my life.  It informs so much of how I view family, parenting, and life in general.

An Update and News

Content note: pregnancy.  If you’re not in a place for that or it’s triggering, please take care of yourself first and skip this one.  

Back in June, I went to see Dr. E for my saline infusion sonogram (SIS) to check my uterus for scarring.  He pronounced my uterus free of issues and also noted that my ovaries looked much better than usual.  I knew I’d been getting positives on the OPKs for a few months as well but had mostly discounted them.  Despite trying to manage my expectations, we’d been trying just in case something shook loose.

One July Friday night, I went to work and shortly into my shift, made a mental note to add “buy new bras” to my list for Monday.  My chest felt like invisible flames were dancing over it, a phenomenon that went on most of the night.  At around four in the morning, it finally hit me.   I’d only felt like that once before.  I counted the days off in my head.  The timing was right.  No way, I thought.

I’m an inveterate POAS addict, however, so I got home the next morning, did my thing, and then stared in shock as the lines popped up positive almost immediately.

On Monday, I called the RE’s office to do the blood tests to confirm.  Either 13 or 14 dpo (depending on the method of counting), my beta hcg came back at 180, a huge number for me.  My previous betas were 30 (11dp3dt with twins that I miscarried one at a time), 22 (10dp5dt with an ectopic pregnancy), and 63.4 (10dp5dt with my daughter).  I held my breath to the next beta forty-eight hours later, which had shot up to 530.

In the next few weeks, I had a spotting scare that revealed a 6w4d baby with a heartbeat and a tiny bit of bleeding in my uterus.  Waited.  Had a bright red bleed a week and a half later that sent me into a panic but the ultrasound showed a subchorionic hematoma (SCH) of about 1.8 cm that was pronounced “small” and not a major concern.  Given that the SCH that most likely caused me to PPROM at 21 weeks with my daughter started at 2 cm, I was less than reassured.

Despite the worry, the bleeding didn’t come back and the SCH shrank. My OB kindly works with my anxiety and checks in weekly to make sure there’s a heartbeat still.  I see the perinatologist (high risk OB) in a couple of weeks due to my history of preterm birth.  I’ll be 13 weeks on Monday, and just starting to believe that there might actually be a second baby in March.  I’m beyond excited at that thought in many ways but also know all too well that there’s no such thing as a ‘safe zone’ when it comes to pregnancy.  At the moment, though, the pregnancy appears to be progressing the way it should.

Truthfully, I haven’t known what to say here, hence the long delay in posting.  The whole thing didn’t seem quite real at first and then felt tentative with the bleeding.  I know well that feeling of hearing pregnancy announcements and the last thing I want to do is cause any one caught in the many difficult spaces of infertility pain.  I know all too well that ache.

I’ve always been honest in this space, though, and it’s time to come forward with this news.

So, for whatever it’s worth, here I am…nerves, happiness, survivor’s guilt, and all.

 

That Thing With Feathers

Microblog_Mondays

Hope is the thing with feathers

That perches in the soul,

And sings the tune without words,

And never stops at all…

– Emily Dickinson

 

We never really did much natural cycling when we first started trying to conceive in 2012.  My cycles were so incredibly abnormal right from the start that we had done our initial testing, gotten the PCOS diagnosis, and started seeing an RE before the one-year mark.  Even when we’d do a few months between medicated cycles and then ART cycles, I didn’t have normal natural cycles.

Once I quit breastfeeding (or, more accurately, attempting to breastfeed), the spot-bleed-spot-bleed-no-normal-periods came roaring back for several months.  Since that was my normal before my daughter was born, I wasn’t particularly surprised, just frustrated.  In some deep, dark recess of my mind, I’d genuinely hoped that giving birth would “fix” my reproductive system.  I tried a bunch of supplements, stayed on met.formin, lost weight, and nothing changed.  I saw my OB/GYN, got a prescription for birth control pills, picked up a pack, declared myself done with natural cycles, and then in a fit of pique, decided to pull a Scarlett O’Hara: “I’ll think about that tomorrow”.

Every day thereafter, I reprised.  I kept up with the supplements and met.formin.  Until one day, the bleeding stopped.  I marked the date as cycle day 1 and shrugged.  I wasn’t too hopeful.  I had an ultrasound in December because I was having pelvic pain and wondered if I had a cyst.  My ovaries had the classic “string of pearls” appearance of PCOS.

I started spotting on day 21, but then on day 28, had an actual round of bleeding that was easily identifiable as a real period.  I marked the cycle again and waited.  The bleeding stopped in a timely manner.  Again, I had a period on day 28.  The acne also started to let up a bit.

Well, this is new.

In late February, we decided to see what would happen if we ditched any form of preventing pregnancy.  In April, unsure if my body was even making the right hormones or trying to ovulate despite having cycles, I ordered some cheap OPKs.  They’ve come up positive each month for an LH surge and are appropriately negative otherwise.  I have a basal body temperature thermometer, but with my odd hours (I work nights twice a week) temping has not clarified anything.

A couple of weeks ago, I realized my met.formin prescription was going to run out, so I called the RE’s office to get that prescribed.  Since I was on the phone with them, I figured that I’d go ahead and schedule my saline sonogram.  It’s a bit on the early side since we’re not planning to transfer until next spring, but I reasoned that if anything showed up as an issue, then we’d have some time to figure out next steps.

Today, I saw Dr. E, my RE, for the sonogram.  When Dr. E checked my ovaries, he noted that they don’t look polycystic the way they usually do.  I looked at the screen.  I know the appearance of my ovaries well, and the usual bunch of immature follicles was definitely missing.  Dr. E asked about my cycles, and I told him about the positive OPKs, regularity, and the supplements.  “Well, keep it up,” he said.  “It seems to be doing something good.”  He told me that it was hard to say given my history if I’d get pregnant naturally, but it was worth continuing and he hoped it would work out for us.

It’s somewhat promising as infertility situations go.  Definitely an improvement in many ways, but is it enough to actually get pregnant? Even with ICSI and a surfeit of eggs, we really don’t make a lot of embryos – and the ones we do make tend to be about a day behind.

I really want to be hopeful.  I really want to think that even after all this, the “old fashioned way” might be truly possible.  I really want to think that even if this doesn’t work out, one of the embryos will work next spring.  There’s no doubt I have seen (and had) longer odds and stranger things work out.

At the same time, I also know all too well the painful wounds that appear when hope flits away and reality unwelcome rushes back.  As I told Arthur recently, “Everyone keeps saying you need hope to live.  But in my case, it usually just f*cks me over.”

That’s where we stay for now in terms of infertility.  In the gray area between hope and not, possible and not, that unsatisfying non-answer.  What I keep reminding myself is that this is a season, not forever – and much of the rest of life is good right now.  Today, though, definitely lightens that gray a little and causes the ‘thing with feathers’ to stir.

Want to read more Microblog Mondays or participate yourself?  Please head over to Stirrup Queens and enjoy!  Thanks to Mel for originating and hosting.