Fuming (and swearing)

Twice.

This is the number of times in a row that my GP's office has fucked up my CD 3 bloodwork.

Last month I went in on the same day as my very positive (but clearly worlds apart, experientially speaking) appointment with the specialist. I waited for the results, and I waited. I'm accustomed (by now) to having to chase my own results if I want to stay in the loop. OK, so far so usual; I called and nagged. Results still not in, they said. I waited a few days more and called again. Still no results, the receptionist said at first, but then: Oh wait! We have them here after all and I can just pop them in the mail to save you having to make an appointment. I thought this was very helpful and thanked her for the trouble. Except that when the mail arrived, it was my CD 21 bloodwork from the previous cycle. (Which means that either she hadn't listened or wasn't paying too much attention to my charts). In the end, I happened to be passing by their office to pick up a prescription for H, so while I was there I thought I'd just rectify the mistake and pick up the correct results (a full month later) in person.

When I asked for these, the receptionist looked at my chart, started acting cagey and mumbled something about having to make a phone call. Long story short: she hangs up the phone and tells me that the blood was not tested because it had clotted by the time it reached the pathology lab. Now, I'm no lab technician, but I have had literally hundreds of vials of blood taken in the course of my life, and this is the first time that it has ever misbehaved in this particular way. I'm thinking that either the samples have to be stored or transported incorrectly for them to coagulate to a point beyond testability. (Any medical types out there feel free to correct me).

Oh, and they didn't bother letting me know this because apparently they had the wrong details about which medical practice had ordered the tests in the first place and the message was never relayed. I kept my cool and put on my best ice bitch calm and collected face.  

Why it's lucky I asked then! says I. Because today just so happens to be CD 3 for this cycle, meaning you can march me straight in, drawn more of my close to boiling blood, and still get the results in time for my appointment with the subfertility clinic on the 24th. All smiles, I was. I even joked with the nurse about not losing my blood this time.

(Ha! The irony! The horrible accuracy of hindsight!)

So you can imagine that this morning when I received a text message saying that I should contact the GP's office to discuss my blood results with a nurse, a hint of oh for fuck's sake, what now?! trepidation crept in. I called and was put through to a nurse. And she proceeded to tell me that my CD 3 hormone levels (for this, the second cycle in a row) were not tested because...[wait for it!]...the vials had been labelled wrong.

They put the wrong fucking surname on my blood, and realized only too late, and had to ditch it. And now I'm at CD 8, which means too late to catch those hormone levels this cycle, in time for our upcoming appointment with the specialist. Also, given the weird variance in my last two cycles, I feel it would have been worthwhile, not to say reassuring, to catch the fluctuations at the time.

I got off the phone and was shaking with anger until H peeled me off the ceiling and soothed me. I know it's not a big deal in the larger scheme; but I can't help but wonder, if they can screw up something so simple with such frequency, what hope is there for more monumental health issues? And don't we already have enough on our plates, really? Must I always cajole, and be vigilant and harass for them just to do the jobs they're trained (we can only assume) to do? How much more blood do I have to spill?

And WHY can't I just fucking HAVE A HEALTHY BABY already, like normal people, without all these doctors visits and poking and prodding and blood letting and angry tears?!

 Because at the end of the day, that's really the crux of it.

OK, I feel a bit better now. Deep breath.

Note that second step people. Source.

Everything is going to be alright

When I was a poor student (as opposed to the poor, middle aged unemployed girl I am now), I set down stakes in a particularly cheap part of Hackney in now-trendy east London.

At the time, it was the only moderately affordable part of the city in which a student could find digs. That was before the area's pre-Olympics makeover. It was still a real neighbourhood then. There were no chain stores on the high street. There were still anarchists' and artists' squats in the neighbourhood. The Turkish guys who ran the off licence around the corner where we bought our milk and tomatoes would lend us money for the bus if we were running short. Every Sunday, this big group of Jamaicans who frequented the pub down the street would set up an old steel drum, light a fire, and serve jerk chicken right there on the pavement from their improvised BBQ. It was - at least in my mind's eye - idyllic.

(There were also three times in the two years I lived there that crime scene police tape prevented us from entering our flat four hours on end. The particular stretch of Hackney we occupied became notoriously known as the Murder Mile. It really was 'inner city', with all the connotations that term evokes. Well...I said it was idyllic, not perfect).

Anyway, at the time it was just barely becoming the haven for arts that it is today, and at the end of a derelict old dead end street the artist Martin Creed had chosen to place one of his now famous light installations on the portico of an abandoned building.
 
It read: EVERYTHING IS GOING TO BE ALRIGHT

The building, which has an interesting history in its own right as the 19th century home of the London Orphans Asylum (oh, the historical irony!), was a sight I passed every day on my way from the train station. Sitting at the end of that street I walked past, it's pale blue light would catch my eye at an oblique angle as the twilight was setting in. Located in a forgotten and dingy part of the city surrounded mostly by poor tenement blocks, I was never sure if that neon sign was being ironic. But there was a whimsy to its placement as well, and I have always had a soft spot for the beauty to be found in small, forgotten corners and encounters.

Still, at the time I found something eerie about that work's glowing neon presence. Now I kind of realise, in a whole new, deeper, more grown-up way, that it was true.

Everything is going to be alright.

Infertility schizophrenia: glass half flempty?

You might have noticed, (it was certainly not lost on me, if only in hindsight), that my announcement about moving forward to IVF was unceremoniously deposited at the end of a blathering post touching on innocuous topics like work and the weather. I suppose there is some deeper psychological insight to be had in this observation, about the state of my continued denial or my fear of moving forward, or...whatever. Make of it what you will.

This post is prompted by a post yesterday from Sarah at Fallopian Groove (who it turns out, while I was writing the draft of this post, was having a Very Big Day Indeed - as well as fuelling the fires of what I previously thought were you-could-mistake-implantation-bleeding-for-a-period! pure urban legend - so drop by and give her a little love and encouragement). Anyway, her description of the 'infertility set' (card carrying member here!) - one so apt that I'm tempted to see it as a kind of manifesto - touched on the need for us to embrace being glass-half-empty kind of people.

My trouble is, this whole experience has made me, for one, more than a little glass/liquid-ratio confused. I'm schizophrenic on this topic.

Because I need, on some primeval and self-protective level, to see the glass as half empty as each two week wait hurtles towards its now-inevitable conclusion month after month. This in order to keep my sanity and sense of self-worth intact, to keep from being broken right in half in such a way that no amount of bandaids of chocolate or curling up under a duvet would sooth. I need to embrace the whole this-won't-be-so-bad-your-life-is-great-either-way sense of the inevitable. 

But by the same token, I need, as I am dragged towards another fertile window of super sexy jungle time each month, to see the glass as half-full, to want to keep bothering at all. Not with the sex itself - which obviously we'd have periodically anyway - but with the vitamins and the hurry up I'm ovulating NOW sexiness and the treating my body like a goddess temple that I still believe might be inhabited by a growing baby one day. To keep hoping in such a way that is more than just a painful reminder of what isn't, and allowing for a belief in what could be.   

These two halves of me are in an eternal manichean struggle:

From this could almost certainly be The Month! I can just feel it somehow!

To there is no possible way that this will ever happen for me! Who am I kidding?! 

My problem is that by nature, pre-utterly hopeless less-than-fruitful baby-making attempts, I have never been by nature either a pessimist or very realistic. (I am the sort of girl who booked a one way flight to Turkey one summer in university with no plan, no language skills, only what I could carry in my backpack, and £200 in my bank account; just because I thought it'd be fun to see where it took me, and I just knew I could rely on the kindness of strangers to help guide me. Turns out on both those counts, and on that occasion, I was right. But I digress.)

I think I probably used to be one of those annoying anything-can-happen-if you-will-good-vibrations-towards-you perky people. And although for the most part I'd like to punch that version of Sadie in the face more often than not nowadays, I guess I still need her reckless, bitterness-free, dreamy hopefulness to hang around on the margins at times.

Take this past cycle for example. I started spotting at about 10 days post-ovulation, right around the time I took my customarily too-early-to-tell pregnancy test intended to desensitize me to the inevitable disappointment but just-early-enough to leave room for hope (welcome, once again, to my neurotic ttc brain). Even though this hormonal weirdness was also a part of last month's unsuccessful cycle (and appears to have become a regular thing), coupled with the, er...negative pregnancy test, the annoying, dreamy glass-half-full Sadie beat down my bitterness for a day and forced me to really question my more jaded self. What if this might was the fabled implantation bleeding? (Hey, just because it's an urban legend doesn't mean I don't fervently believe in it at times; just like say, the Sasquatch, or a new Star Trek: TNG spin-off). I briefly wondered if I might not, in fact, be with child.

And yes, I can understand why you'd want to punch that Sadie in the face, but you know what? I also kind of liked the floaty feeling that carried me through that one delusional day, because even if it was deluded I managed genuine joy for those hours, and that fact did nothing to exacerbate what would in any case have been the same feeling of crushing failure and time-is-running-out anxiety that I feel every month.

So it's a dilemma; one that I know does not end, for those of us who have struggled so to get there - and maybe struggled with staying that way - once a pregnancy finally occurs. I'm interested to to know how other people cope. Or am I the only one who suffers from this particular brand of schizophrenia?

What about you bloggy friends? How do you manage the delicate balance of hope versus realism? Have you changed in your outlook over time?

Never a clear winner. Source.

Salad rolls and Star Trek

I have another new weapon in my deluded experimental artillery of infertility busting lifestyle habits. Recently my acupuncturist did some food sensitivity testing on me and suggested that I give a gluten-free diet a try. (He's not the first to suggest a link between gluten intolerance and infertility/loss, but I don't want to overthink that one, mostly because we all know we lead healthy lives, do everything we can for those babies-to-be, and shouldn't beat ourselves or our bodies up over not controlling managing carefully enough. I for one am down to only grass-fed grass and decaf, dairy free morning coffee; while the cigarettes and daily McDonald's intake of many a passing parent I encounter in the street has clearly not made a difference, so go figure.)

OK, so on the one hand this gluten-free stuff sounds like one of those obnoxious trends of the kind which could actually be the cause of nausea and fatigue for those not affluent enough to enjoy $1000 a day yoga retreats and all organic, all the time, locally produced, bicycle delivered kale chips picked by specially trained, ethically kept, artisan, free range guinea fowl exposed to it.*

 But I love to experiment with cooking; my kitchen is my laboratory, and so I found the prospect of rethinking my cooking and eating habits rather exciting. And we are fortunate enough to have a virtual Aladdin's Cave of a supermarket around the corner from our place, run by a lovely Indian-Ghanaian couple and their children, and where I can find everything from tamarind paste to pickled green mango to fresh taro root. When we moved here I made a promise to myself to cook with a new ingredient every month, so we've had banana blossom salad and jackfruit seed curry, and now I have the perfect opportunity to experiment with stuff like sweet potato noodles and teff flour. So with the beginning of April and an end to the over-indulgence of my extended birthday celebrating (parts one and two), I decided to go cold turkey for a while.

Yesterday we made Vietnamese salad rolls. I initially thought I'd share the whole recipe here since I altered some of the ingredients from that link, but then I realised as someone who doesn't really follow recipes I'm actually too lazy to write the whole thing. (I don't own measuring cups and usually just throw stuff in a bowl, adjusting the quantities until I like the taste; for me it's always like 'a handful' of this, or 'until it feels like' that, so it's kinda tedious to write exact measurements).  I can say that this recipe is a pretty decent one and we were really happy with the results and the authenticity of the taste. I recommend you use not only both the mint and cilantro, but also a healthy quantity of basil (the Thai variety, if you can get it), because the fresh herbs really make this dish. Also, we added both daikon radish and red bell pepper to the vegetable fillings. Finally, in my opinion there's no replacement for good sriracha sauce to provide the heat in the peanut dipping sauce.

Although working with the rice paper takes some getting used to, they were incredibly fun to make because it's very hands on. See? 

H making a mess in the kitchen, just the way we like it.

The rolling technique takes a little practice, (the trick being to top your veg and herb combination with another thin layer of rice vermicelli before folding), but after the first four or five you get the hang of it. The rice wrappers are so thin that the colours and textures of the filling create a beautiful lacy effect on the completed rolls. I was lucky I managed to get any pictures, because they smelled amazing and it was hard not to nibble compulsively.

Finished product.

We ate our salad rolls while sitting on the sofa watching old episodes of Star Trek: Deep Space Nine, and maybe it was the magic of those aromatherapeutic herbs, but all suddenly seemed right with the world. 

You see?, I tell myself. All it takes to make you step back into joy is a few Vietnamese salad rolls, an old episode of Star Trek, and the arms of your beloved around you. So whatever is in store for us in the near or distant future, life rightthisveryminute is not so bad, after all.


*Seriously Gwyneth, I understand why you're having panick attacks, I really do. I can relate to the stress of trying to manage day in and out.... Oh, wait.

When you look at it like that

First off, you guys. You guys. I mean seriously, it's these little nuggets of kindness and encouragement that lift me in such times and all your comments and emails were so appreciated. Thank you. 

I'm not going to lie; the last few days have been exhausting. Between tying up all kinds of loose ends as my job winds down, and my grief hangover, I don't have much physical or emotional energy these days. (This is not helped by another round of will-she-won't-she erratic menstruation antics on the part of my disobedient body). Right now, my Spring ain't looking so Invincible people.

Still, I'm putting one foot in front of the other. I'm slowly trying to catch up on all your blog news, and on my commenting. My brain has been intermittently weighing pros and cons, cons and pros in all of this, trying to figure out where I am for the moment...I'm trying to focus on pretty, shiny objects little things that bring me happiness, and just stay with that. Because that's the thing I know how to do, and what else is there, really?

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It's not just my metaphorical spring which seems to have been deferred. We had snow flurries again last night. No kidding. I'm missing the sun and the close-by beaches of Portugal now more than ever. On the other hand, if H's weather divination has any basis, we're still in for some good things in the remaining three seasons of this year. I'm going to go with that.

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 Yesterday was my last real day of work at my current job. I had to accompany a student to an offsite visit where most of the clients are mental health patients recovering from substance misuse. Within 20 minutes of arriving, I'd had encounters with two men in their 70s. One wanted to know if I'd accepted, really accepted, the Gospels into my life. He followed me around the facility until I explained my confused Catholic/Jewish parentage and my personal views (Holy atheist, Batman!) and that finally stumped him. The other guy  - in his 70s, remember - kept eyeing me and my student with a creepy leer, and tried to ahem...shall we say 'win me' without apparently realizing the coffee he was drinking was ending up in a fine spray on our faces. Yeah, he was hot stuff alright. Fun times. Will I miss this part of the job? For the most part, not so much.

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I'm down and out for another cycle. I was neither hopeful nor despairing this time around (in fact I pretty solidly found other things to think about), and so ends another two week wait, less eventful than many that have come before, and for that I am thankful. Still, after two + years of staking my existential status on where I sit in a monthly, merry-go-round cycle, all this uncertainty that my body is dishing out makes it hard for me to relax into the early part of my cycle. I'm Cycle Day...? 2? 3? -1? I have no clue. It's on and off and this is definitely signalling a less-than-reassuring new chapter. Luckily, the lovely Dr. B was entirely true to his word, and we have an appointment to meet with his colleagues in the sub-fertility clinic in just over two weeks. I'm hoping they'll be able to get to the bottom of all this faffing about that my body is doing. By then all my RPL panel results should be back so we can review those as well. I feel like I'm getting good care at last, and people who listen and follow up.

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Crucially, H and I are making big progress on working through our own ideas on the 'what next'. I hinted previously that we'd approached some more concrete plans in this department. Another long, tear-filled, looking-forward (and ultimately very cathartic) heart-to-heart took place over the weekend, and we finally have some sense of where we're ready to go. At our appointment on the 24th we'll ask about possibilities for IVF. We finally fulfil the criteria for 24 months of active ttc without any positive results (technically the year after S died was spent much more actively on grieving than on making a new baby). We still don't know the wheres or hows or whens, exactly (and there's still all the other uncertainty to deal with). But until quite recently, H had trouble with the idea of any kind of major intervention. He admitted himself that it was a kind of protective denial of the reality of our situation. So this is big. Huge.

And just like that, it looks like we might be boarding the IVF train. Holy shit. Honestly though, I'm hoping it'll give us the feeling of moving in a solid direction. Any direction is better, surely, than spinning our wheels as we have been for so many months now.

So good/bad/good/bad/good/bad. All in all, I think I can work with this. I just need to catch my breath first.

A real mixed bag, sweet and sour. Source.

What the body remembers

When I was doing my post-doc and began working with trauma patients, I came across a book that I found particularly compelling, in a professional sense. It was about the important relationship between psychotherapy and neurobiology, and its basic premise was that even when there are things that your brain or your psyche can't compute - because maybe they're simply too devastating - your body holds on to those memories. The author argued for a therapeutic process which gave voice to the body, suggesting that this reconnection could aid in healing.

It's true; the body holds onto a lot of stuff that the brain, because of its protective capacities, simply can't deal with. I've always been a firm believer in the mind/body connection, but I got to experience it firsthand, in an embodied way, when I was forced to grieve the loss of my son, and subsequently all the secondary losses that came with that.

When I began to frequent babyloss blogs, I would hear parents speak of this phenomenon again and again: your consciousness might forget the weight of a particular date, as your brain allowed it to become just another number on your calendar. Then maybe, seemingly out of the blue, you'd get sick or just not be particularly good at coping any more, when you'd otherwise felt you were making 'progress'. That's your body remembering.

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I meant for April to be the continuation of the mindset I managed to embrace in the latter half of March; hopeful, irreverent, happy. I survived another birthday (and another two week wait) without too major a meltdown. H and I made progress on the medical front, and found a really great doctor. We are making plans for exciting summer travels. Here in blogland, I wrote a series of silly, carefree posts that reflected the mood I held for many days in a row. I planned to write a post about spring, such as it is finally here; to enumerate all the ways I feel blessed, all the things I have to look forward to. They are, after all, many.

But then.

Then I ended up here. For the past two days, I've felt indeterminately melancholic. My brain is fuzzy and can't seem to concentrate. I'm irritable with H and work and life in general. I lack my usual energy, but I also feel restless a lot of the time. In light of all the loveliness of the past weeks and my comparatively positive mood, I struggled to think of why this might be.

And then I remembered: this month marks three years since the beginning of our journey to parenthood. (How has it been been three whole years already? How has it been only three years?)

In April of 2010, after we decided to take the plunge - less than a year into being together; but we both knew what we wanted and weren't getting any younger - I had been to see my oncologist in Canada to discuss how my disease and treatment history might effect this journey, and was told not to expect too much too quickly. We were initially cautious. Three weeks later, while we were visiting H's parents in Germany, we learned that we had conceived S; in our first month, before we were even really actively trying. (And little did we know just how active, and just how trying, the whole thing could become, back in those halcyon days). We were scared and elated and filled with wonder. This season is so evocative for me. For seventeen and a half weeks in the spring and summer of 2010, S was here with us, and it was like magic.

Until it wasn't. And I was broken. I was shocked by the depth of my own grief. I gained new understanding of that trite, rom-com notion of the broken heart. Mine was shattered in a million pieces, and every day for many months on end I could feel it, actually feel the shards piercing me. I often had a searing pain and a weight on my chest that made it hard to breath. And while the shards eventually melted, my heart developed new scar tissue to protect itself, and the pain slowly dissipated to something much gentler, the sense that there was no way to possibly ever understand - on a cognitive level - how we had got from there to here remained. How had this become my life?

I don't often spend time thinking those thoughts these days. I'm better than I was. I'm healing. I laugh a lot. I enjoy the little things again. But as I look down the long stretch of time and failure and loss that has carried us away from that magical time, a feeling that anything was still possible, my body and my brain seem to have momentarily reconnected: I'm missing those days in the spring of 2010.

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I miss the innocent and hopeful me I was in the 'before'.

I miss my belief in a 'logical' course of events: you pee on a stick. You see two lines. You cry and rejoice. You have a baby that outlives you by many decades. You walk away, happily ever after, into the sunset.

I miss the (stupid, vain) certainty I had of H and I as a dynamic, confident, always ebullient pair who were blessed, who always had good things coming to us. 

I miss the carefree way I used to be able to interact with friends and family and the world at large, before I crawled inside this protective, fearful carapace which so often walls me off from those around me. From their normality, their joys, their forward moving lives.

I miss the unwavering support and understanding that I used to think they'd be able to provide, before I realised, looking backward, that we were on a completely different path from virtually all of those people, and that this path was diverging into an ever widening gap of experience which they would be hard pressed to even grasp, never mind support.

I miss the version of myself that would have been able to see my two subsequent pregnancies - even for the brief time they were with us - as babies I might look forward to meeting, instead of the dread and diminished self-worth that accompanied those interrupted journeys.

Most of all, I miss my boy. I miss feeling him in my burgeoning belly. I miss the chance of knowing the person he would have become. He'd be two years old now, a chubby toddler. If he took after either of his bookish, nerdy parents, he'd already be showing an abiding interest in the written word. Maybe he'd have his father's flair for the dramatic. Maybe he'd be rambunctious and naughty, having inherited my curious, restless spirit and intellectual ADD. Our lives would be different now in ways I am still not able to fathom.

It doesn't often happen. Three years on, some supposedly significant dates - a loss, a due date, the date I got a positive pregnancy test - may come and go without my even realising it. These random down days may not come forever, I don't know. (Though my mother says that she still has these vaguely depressed anniversary days more than ten years after my grandmother died). And though I feel S is present in some way in our lives, I don't often indulge in the 'what ifs', partly because they're just too painful. My brain is protective.

I tell myself that it does no good missing any of these things, because they're gone and won't return. (With the exception of S, who is a different matter entirely). Things are what they are, and no amount of lamenting will bring them back. It was a realization I finally had months before starting this blog, and most days this knowledge allows me a kind of freedom, so that I am able to embrace the now. I am finding contentment in things again, in my life, with all its uncertainties. And although I am no longer (and probably never will be again) any of those things listed above, there are new, and better things that have replaced them; I am more compassionate, more patient, and I'd like to think more gracious with others. I feel acutely aware of all I have to be thankful for. I begin to believe in myself, to trust myself again. I don't want it to appear that I'm sliding backward, or that I'm ungrateful for all the wonderful things I have. I'm happy.

But there are days like today when I guess my body insists I stop, let down my carapace, and grieve. Be gentle with yourself, my body whispers to my brain, in an inversion of the logic we have learned from neurobiology, with the brain sending out missives that allow the body to function.Today, my body is calling the shots, and it has very clear ideas of what should take precedence.

Remember. Love. Grieve. Hope. Heal.

The thing about these embodied memories, as that book also pointed out, is that they aren't only a repository of your traumas; they are also a testament to your strength, to the way in which the mind and body can collaborate in positive ways to strengthen people.

Spring is here, it's come one way or another. Each day follows the last. We are moving forward.  I've learned that even while it retains this memory, my body keeps going, keeps fighting to be a part of the world, to make sure I'm really in it, that I'm happy.

So for now at least, my brain will listen, because that is also part of the trust I am regaining in myself and my body. I know it won't forget, but it won't quit either.

Putting myself back together. Again.

The Easter Bump Hunt of 2013

This morning, slipping out of bed early to leave H for a late lie in after a later night of work, I was lazily sipping my (decaf) coffee and reading about the search for the Higgs Boson here, when this reference caught my eye: 'The Easter Bump Hunt of 2011'.  

Why, yes I thought to myself. That's what I'm caught up in too, for 2013!

Oh, wait...

(And yes, I have bump on the brain. And, are there other kinds of bumps besides pregnancy ones? I'm suddenly gripped. And yes, you'll have to read the article through to the end for their particular usage of 'bump'. I can't do all the work around here people. I'm no physicist.)

But continuing with the article, it got more uncanny. According to its authors, the Bump Hunt of 2011 'was only one episode in a roller coaster of sleepless nights, bright promises, missed clues, false alarms, euphoria, depression, gritty calculation, cooperation and envy, all the tedium and vertiginous notions of...'

I'm very tempted to finish that sentence with 'infertility', but in fact it read 'modern science'.

Sounds familiar though, right?

So friends, we're all really very much like physicists then.

Totally not my ovaries. It's the search for the Higgs Boson! Source.