Ticket In Hand

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.

Advertisements

Good Stuff

Content note: Child-centered post

Yesterday marked the first day in quite awhile that the weather was fine enough for a good walk outdoors.  The temperature was in the mid-40s, which, given cold this winter, felt downright balmy.  The sun shone and we took a short walk to the park down the street.  E rode her trike and collected rocks.  We came home tired and a little muddy (the trike tipped in a puddle) and it was wonderful to finally get outside again.

The girls will turn two and four shortly.  They’re no longer babies, but instead children who are more interested in running ahead, picking out tiny treasures for their various collections, and reading books.  It is, of course, a little bittersweet – after waiting so long for them, it feels like the days have sped up – but it is also marvelous to watch them grow and change and begin to fill in the contours of their personalities in demonstrable ways.

M waited a long time for words but suddenly now in the last few weeks began speaking in full sentences: “I want more milk.” “Don’t go that way.  Go there.”  “It’s time for snack.”  She’s almost discharged from developmental therapy (for the speech) and knows her own mind well.  Books are her favorites, particularly Paul O. Zelinsky’s gorgeously illustrated Rapunzel, along with almost any book that has flaps to open.

E also is doing well.  Every time I think about the tiny 2lb 8oz (1190 gram) baby in the NICU incubator and stare at this child who is still quite petite in stature but huge in personality, it almost makes me want to cry with happiness.  She’s at age level in most skills except for some gross motor that needs to finish catching up.  Her favorite thing is stickers and making cards for people that she happily scribbles all over and explains to me what she “wrote” there.

Together, as much as I dislike the term itself, the girls are the definition of “frenemies”.  A sample interaction: E yanks a toy away from M, who tries to push E but doesn’t quite manage to do more than brush E’s shoulder.  E flops on the floor and starts sobbing loudly.  M goes over and pats E, making soothing noises.  E yells at M and stomps off.  A few minutes later, both girls are cuddled on the couch with E explaining a book to M, who is listening with great attention.

In other words, they’re siblings.  But I also know how much they genuinely care for one another.  E worries about M, M searches for E when E’s not in sight, and they play together well a surprising amount of the time.

They’re small children and there are days that don’t look nearly this idyllic, but every day, I’m grateful. 

Luck

Ever since I called my RE’s office to set up the series of appointments to lead up to the final transfer, it’s been on my mind a lot.

Like, a lot.  As in a truly ridiculous amount.

I think a big part of it is the unknown aspect to the thing.  I’m truly privileged in the infertility world with my kids and can be happy whatever way life takes me, but the not-knowing part bothers me.  The other part that tends to get under my skin is that – other than showing up and taking medications as ordered – I have no real control over the outcome.

On the spectrum between the laid-back people and the iron-fisted control people, I am definitely a control freak.  Some of this stems from anxiety (as in the diagnosed type).  My brain has a not-so-marvelous tendency towards getting stuck and panic attacks.  I like predictability, stability, and known quantities – and privilege has allowed me some insulation from the unpredictability of life in other areas.  This, I suspect, is why infertility in general has messed with my sense of self so much.

Earlier this week, I ran across an article about socioeconomic privilege entitled The Radical Moral Implications of Luck in Human Life: Acknowledging the role of luck is the secular equivalent of a religious awakening.  Author David Roberts states: “It’s not difficult to see why many people take offense when reminded of their luck, especially those who have received the most. Allowing for luck can dent our self-conception. It can diminish our sense of control. It opens up all kinds of uncomfortable questions about obligations to other, less fortunate people.”

Infertility is nothing if not one giant game of luck.  Diagnoses, lack of diagnoses, economic status to pursue treatment or adoption, one partner or both, what doctors/labs one has access to, the quality/growth of embryos, whether or not those embryos implant, miscarriages, emotional resources – none of these are really factors individuals have control over.  Heck, when pursuing treatment, I know I don’t even have control over when I have to be at the clinic during cycles.

Acknowledging how little control I really have over my life circumstances – and how much good luck has played a role – is a bit unnerving.  Roberts points out in his article that “I get why people bridle at this point. They want credit for their achievements and for their better qualities. As Varney said, it can be insulting to be told that one’s success is in large part a lucky roll of the dice.”

It feels like – given the sums of money, emotion, and time that are in play during treatment – the outcome should be more predictable.  That anyone who rolls the dice (or wants to roll the dice) at anything related to infertility should be rewarded commensurately.

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.  

Coffee-Mug Philosophy

In my offline life, I’m in the process of some new stuff at my job that changes my workflow and sort of upends my established routines there.  It’s fine, positive even, and it’s something expected/planned but it’s amazing how much energy goes into change and re-configuring my habits.

The other day, these words fell out of my mouth: “It will be fine!  All this upheaval and hard stuff is going to make us stronger, right?”

Ironic, because I really hate that particular cliché.

~*~

I heard it quite a bit throughout the infertility journey: what doesn’t kill you makes you stronger.  I heard it when Arthur went through job losses.  I heard it in NICU.  I’m grateful no one said it too me after my brother died because suicide pretty much flies in the face of that kind of gritty positivity.  But that statement has hovered in the background of most of the big, tough moments of my life.

I think – as with most “sound bite” or “meme-ready” sorts of statements – the reality is much more complex.  I also think sometimes it’s employed as a quick conversation ender or a way to escape big feelings.

There are hard experiences that I feel have made me stronger, mostly those that are designed to break down before building up.  Nursing school sucked.  It was terribly long hours often (getting up at 4:15 am to drive two hours to a clinical site, being there for 8-10 hours, then going home), the studying was a full-time job, and I have never forgotten my first semester lab where everyone cried at least once except for the two students who had been in the military.  It was also truly worth it and the toughness was incredibly important when I got into real world and took my first assignment on a general medical-surgical/telemetry floor.

Some of the job losses for Arthur fall into this category as well.  It was sort of a surprise to me that after Arthur’s first job loss, the sky didn’t fall and we figured things out.  We were really privileged in many ways, but the experience helped me better hone savings plans and recognize that while it was 100% not optimal, it was survivable.

But as far as some of the infertility experiences go?  Being told there was no heartbeat?  Sitting in a hospital bed being told that I was ruptured and going to lose our very wanted baby?  Waiting in NICU for test results to come back to see if E had NEC?  Losing my brother?  No.

That sh*t broke me to the very core.

I mean, there’s a way in which all these experiences have given me a lot of perspective.  Going through all that reminds me on the days where all the little ridiculous stuff is piling up and it’s frustrating that I’ve survived so much worse.  That I will make it through that day.  I’m much better now at differentiating my small life stuff from what constitutes my bigger life stuff and reacting accordingly.  It’s also made me more able to take some forms of tension or frustration in stride, because, well, I can manage.  In that sense, the adage is correct.  Perspective is valuable in life, absolutely.

What the saying doesn’t reflect, however, is that there are some really ugly broken, jagged edges that are still in the process of being smoothed.  It doesn’t reflect the big ways in which these events changed the course, not always for the better.

I started out in elder care as a nursing assistant when I was 19 years old.  I loved it.  I always envisioned myself as a hospice nurse eventually.  I did some clinical time with hospice and felt confirmed in that calling.  Even when I started in the “real world”, I took assignments that would give me experience.

Then infertility hit and I was just so sad.  Conflicted.  Too many emotions running rampant to step back and be in a high-emotion field like hospice.  I put the dream on hold, mentally, and moved forward with a different path hoping to eventually move back that direction.  Then all the losses happened, NICU happened, and my brother died.

Now, I work in an area where I come in contact with the “hard stuff”, but in far more limited doses than a field like hospice.  It’s a good balance, I’m good at it, and I’m happy.

But I still mourn, a bit, that I had to admit that infertility, miscarriage, prematurity, and suicide loss limited me.  Maybe someday, but it will be years and a lot of therapy if hospice is ever back in my path.  I won’t do it unless I know my stuff is fully handled and integrated.

Empathy is another sort of mixed bag in life after everything.  On the one hand, I know these experiences have made me more empathetic in many ways.  I definitely can identify with people’s struggles and have a better ability to be present in those moments.

But it’s also made it far easier – especially when I’m tired, stressed, overwhelmed, or overstimulated – to fall into a pain Olympics sort of mentality or get really jealous.  I don’t think this is true for everyone by any means, but it’s definitely an issue for me.  I’m ashamed to admit that even while I was very happy for my BIL and SIL when they got pregnant, I was positively green with envy that they had gotten pregnant with twins on their first fertility treatment.  It threw me back mentally into every f*cking failed cycle and miscarrying twins on that first hopeful IVF.  I was happy for them but absolutely overwhelmed also at how sad and angry I was for my own losses.  This resolved with time and things are fine in that set of relationships at this point, but it’s not a great quality and one I’m on close guard against.

All the grief has also exposed the fault lines in some relationships and the Awful Things People Say.  After my brother died, it’s been a revelation how much stigma suicide really carries and also how uncomfortable some people are with grief and strong emotions.  Those secondary losses were really unexpected and the reshuffling of boundaries has been painful.

The fall-out also shows up with everything related to pregnancy or conception.  I’m afraid to embrace the idea of this final embryo transfer – even when I know, no matter how things fall out, I will be okay – because the whole thing activates all the panic responses and pushes me back to thinking on all the other memories.  When I was pregnant with M, my OB wound up allowing me to have appointments weekly through the first trimester, until both the risk of pregnancy loss had gone down and I could pick up the heartbeat on my home fetal doppler.  I was having panic attacks I couldn’t get under control, despite knowing I would manage no matter what the outcome.  It was awful and I’m really grateful that my OB was so kind.

And perhaps that’s one other little silver lining to the tough stuff: I’ve had the opportunity to see people step up to the plate as well.  People who have gone above and beyond and helped so much.  It gives me faith in humanity, in the idea that there is goodness out there.  It helps me better identify where I can be that goodness for others.

All this to say: it’s a mixed bag.  What doesn’t kill me has made me stronger and weaker…and panic attacks…and exposed my limitations along with my less than awesome qualities…and brought out some of my good ones.  But I guess that doesn’t fit as nicely on a coffee mug.

The Left Overs

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.

Infertility, Stigma, and Reading

Content note: Infertility portrayed in very problematic ways – possibly not the post to read if you’re in a tough place right now.

It’s old news now, but a month or so ago I read the Slate article that has been making the rounds in the infertility community – for good reason, it’s an excellent article hitting up a wide variety of issues and reasons infertility is particularly tricky when it comes to the workplace.  It also gets into how, despite more openness and acceptance for infertility, there’s still a very long way to go.

Since my own experiences with infertility/miscarriage, I’ve definitely noticed storylines or even short bits in books/films/TV relating to adoption/loss/infertility (ALI) far more than I did before.  While infertility is becoming more realistically depicted at times, I’m still somewhat surprised at how often I run across a particular trope that I strongly dislike: that women struggling with infertility/loss are scary.

Perhaps it’s because this came up in two books I read recently: The Alice Network (Kate Quinn) and Daughters of the Lake (Wendy Webb).

The Alice Network is largely about the female spy network that operated during WWI in France, interspersed with a young woman searching for her lost cousin in the wake of her brother’s suicide post WWII.  All the trigger warnings apply on this book both from the ALI perspective (unplanned pregnancies, abortion, loss) and generally (war, torture, Nazis, rape, etc.).  There’s a short bit, however, for a side character that includes infertility.

[Very minor spoiler ahead]

Spy trainer Captain Cameron went to jail because his wife decided to commit insurance fraud to provide for a child she couldn’t conceive.  Her infertility causes her to go to desperate, not entirely sane, lengths.  She conceives and recovers her mind.

[End spoiler]

Honestly, despite how much I was immersed in the rest of the story, this part almost made me put it down because it infuriated me so much.

Shortly thereafter, I picked up Wendy Webb’s Daughters of the Lake, a gothic suspense novel, on sale at some point and finally got around to reading it.  It’s definitely a ghost story, but in a mildly shivery sort of way that I enjoyed (I then promptly picked up a couple of her other books from the library and those descend into terrifying outright horror stories – this one I found much milder).

The novel had a baby/baby loss subplot, however.  Again, the theme of women deranged by loss and not having a child came up toward the end of the book.

Even setting aside artistic license and drama in novels, this Dear Prudence letter headlined “Help!  Sometimes I Worry That My Infertile Friend Wants to Kidnap My Baby” (I would not click over if you’re in a fragile place because yes, this accurately sums up the substance of the letter).  Prudie calls the letter writer’s comment to the friend unkind and gives the letter writer a thorough tongue lashing, but the letter itself definitely displays a truly alarming attitude toward those struggling with infertility.

I am so tired of women struggling to conceive or dealing with loss being portrayed as dangerous or harmful.  Infertility made me feel a lot of emotions.  Sad.  Angry.  Conflicted.  Anxious.  Frustrated.  Jealous.  Certainly these and many more, but while it’s true that I chose not to attend baby showers, disliked pregnancy announcements for the most part, and had to unfollow streams with lots of new baby/child pictures at times, I never wanted to harm anyone.  I never wanted to take anyone’s baby.  I never lost touch with reality.  I never wished that difficulty or sadness would befall anyone.  I’m not going to say that no one was ever disappointed in my reactions or that a few people insisted that I should be visibly overjoyed for pregnant women, but I tried – hard – to be kind and keep my feelings to myself in public.  Mostly because it wasn’t other people’s fault and I knew they weren’t having babies at me.  I just wished it was my turn and that conceiving had been easier (and – not going to lie – highly resented the amount of money we were shelling out for IVF).

This is why I write about infertility, in the hopes that reality will help to dispel some of the more pernicious bits of stigma surrounding this condition.  But it doesn’t help when a scene giving a picture so much to the contrary are popping up in a novel as widely read as The Alice Network.

Mile Eleven

About a month after my PCOS diagnosis and before falling fully down the rabbit hole of infertility treatments, I ran a half-marathon.  It was one of those “bucket list” kinds of things I’d begun training for in earnest shortly after we originally began trying to conceive in April because I knew deep down something felt “off” and didn’t want to face it.  I took my running habit, ramped up, and signed the papers to run in November.  If I was wrong, I figured, I’d walk or give my registration to someone else.  In the meantime, the long runs gave me something else to focus on.

The day of the race was a mildly overcast, cool but not cold November day – perfect weather.  I lined up at the start and took off with the other runners.  The first mile was great.  I was excited, my adrenaline was high, and it flew by.

The second and third miles were not so great.  This was the point where I began to realize what I’d gotten myself into and I fought the part of my brain that kept telling me I’d never make it 13.1 miles.  When I passed 3.1 miles, I wondered why I hadn’t just signed up for a nice 5K.  Then I’d be done.  However, as I kept running, mile four felt easier and I started enjoying the thing.

I ran through the countryside.  This particular race tends to be quiet, isolated, and doesn’t have the quantity of spectators or cheering that I’ve read others have.  I ran over country roads, admiring the farmland, enjoying the quiet.  I caught up with an old buddy and ran a mile or so with her, chatting.  Otherwise, however, I was by myself with my i.pod and loving every minute.  Seven miles passed.  I have this.

Then I hit mile eleven.

I really wanted to run the entire race without taking sections to walk.  But as soon as I got into that eleventh mile, it wasn’t merely that I wanted to walk.  I wanted – seriously – to lay down at the side of the road, quit, and let the race organizers come pick me up.  I hit the wall, and I hit it bad.

A combination of factors were probably at play here: eleven miles is a long way to run, it had been a bit since I’d had water or electrolyte replenishment, and in a 13.1 mile race, eleven is right at that nasty spot where I was close to the finish line and yet far enough away not to have the adrenaline rush of being “close”.  It did not matter.  It sucked.

A hill rose up in front of me.  You have got to be kidding me, I thought.  This wasn’t even a real hill.  I grew up in the Blue Ridge Mountains of Virginia, so I know hills.  This was more of a tuft of dirt but the placement infuriated me.  The irritation gave me strength.  I ran up it and finished out mile eleven.

I finished shortly thereafter, just in time to see the winner of the marathon cross the finish line, get some water, and celebrate with Arthur and a few friends and family who had come to cheer me on.  I was glad I had done it and I had managed to complete it my way – without walking a single step, and well under three hours.

~*~

Really, in the vast majority of ways these days, I’m fine.  Happy, really.  Not needing the support the way I once did.  At this point, I love where we are in life and it’s good.

There’s one more embryo, frozen.  Tested.  Waiting.

I’m procrastinating on calling the RE’s office even though Arthur and I have a reasonably solid plan because…well, it opens doors.  It reminds me that I’m not all powerful, that plans fall apart, that doing everything right can still result in heartbreak in both expected and unexpected ways.

I like feeling in control.  I know I’m not, but on a day to day basis, it’s really easy to pretend, to slip into the minutiae and let the illusion remain.  Calling the RE, putting in motion the final plan, means letting go.

It’s time to run mile eleven in this race.  Face the tuft of dirt.  Keep putting one foot in front of the other.

Because the finish line is somewhere close.

This (long-form 😉 ) post has been a part of Microblog Mondays, where the idea is to write in your space, usually a short post but whatever moves you.  If you want to read more, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.