Trial and Error

 

Though I didn’t expect the experience to be entirely without issue, I honestly thought this surgery – or more specifically, the process – would be easier.

Maybe it’s because I felt un- or under-prepared and unfamiliar with nearly all involved: This was not my usual medical team, but a new specialist and surgeon, and a different hospital entirely from my usual treatment and surgical home base, meaning new nurses, foreign staff, and fresh residents — none of whom knew me, and none I could look to for reassurance or a familiar face, who’d been through everything else, able to recognize and understand if past trauma presented itself.

And it did, for whatever reason, immediately.

Sitting in admitting, while relaying my personal information and other details back to the receptionist, waves of nausea rolled across my shoulders and down my back; strangled round my throat and branched up my neck, behind my eyes and across my temples.

“Breathe,” my mom told me.

Breathe.” A simple word she repeated when panic hit as I lay under intensive care, and one she often returned to in the months that followed. Now, in the lingering aftermath, it’s more a fallback mantra offered knowing there’s nothing she can tangibly do in the moment, but knowing that her voice… it helps. It’s familiar, and it distracts, and though that goddamned word immediately provokes – sparks an irrational anger deep in my core – it somehow simultaneously works to defuse and calm.

And increasingly, it’s a word that echoes through my head when alone, and overwhelmed, and a given moment threatens to drag on for eternity.

We made our way through the snaking corridors, past the ICU and through oncology, up to the surgical unit where I’d be prepped for the OR. There were no doors to walk through, just a gaping entranceway with different floor tiles on either side of the walls separating the hallway  from the unit, yet I could not step past the invisible barrier.

I stood rigid, toeing the line where the different floor designs met, and I cried.

This, I didn’t see coming. This has never happened, even in all the dental procedures and oral surgeries I’ve had since the events of 2013, I’ve never been physically paralyzed by panic, monetarily unable to move.

But it finally happened, and I seized up, frozen, before slumping over, shaking, and hyper-ventilating.

I was embarrassed for being such a spectacle, and angry at my inability to stop the body from reacting as the brain commanded it to.

I can’t say I felt helpless, but in a way I felt lost, as if I were about to be dropped on a dinghy into an ocean without warning. I consciously chose to react the only way I knew how: I flipped the mind into survival mode, the same strategy employed during that horrific 4-hour pass fresh out of intensive care back in ’13.

Just get through right now, and then get through today, and worry about what comes next, tomorrow.

As blood was drawn, vitals were taken, the body was scrubbed and stripped, I worked to dissociate myself from what was physically taking place.

How best to explain it… it’s almost like freezing the moment and taking a step back from yourself, or from the situation. So, you’re there, but you’re not as vividly living it.

You’re more watching it happen, from afar. It feels almost as it does when (if you have these kind of dreams, as I do) you’re watching something play out in your dreams while fully aware that you’re dreaming. You know where you are, and know you’ll remember every detail when you wake up. There’s nothing you can do to escape the dream, only know that at some point it’ll end, so you’re left to ride it out until consciousness returns.

That distance, however, lasts only as long as the prep does. Once taken to the surgical holding area where I’ll meet with the anesthetist and charge surgical nurse, I’m again fully present, and again intensely unsettled.

When I try to relax and close my eyes, my brain returns to 2013. I see my mom wheeling me around the grounds outside the hospital and feel the sun’s rays penetrate my skin for the first time in months. I smell the flood-saturated breeze. That gorgeous, oddly upsetting breeze.

I feel the PICC, I smell the TPN.

I’m shaking again.

“Breathe,” mom says.

Nausea hits at the anticipation of the combined taste and smell of the gas pumped through the mask I’ll have strapped to my face shortly, as well as the cold, burning pain of the anaesthetic that’ll be forced through the veins.

I know I’ll have a problem when they try to place the IV — it’s a trigger every time, and all involved in the surgery have been thoroughly briefed, and are fully prepared. They know what to expect, and how it’ll unfold: The brain will force the body to react disproportionately to the situation. I’ll be soaked in sweat, my face saturated with tears, and I’ll physically, quite vigorously, tremble.

It will all be involuntary.

They know not to stop, to not be alarmed, and just keep doing their thing. They know I’m fine, and that they’re not causing the distress, and we all understand each other’s roles in this exhausting scene.

And once I’m in the OR and strapped to the giant T, it all plays out as predicted.

Waking up was thankfully uneventful. However, once moved to a room, the post-op pain reached a threshold no one anticipated, and one which IV narcotics refused to mollify.

I didn’t have the PCA pump, though perhaps I should have, because the torment remained uncontrolled even as the thresholds of Fentanyl and Morphine were maxed.

Any more of either and it would stop my respiration… or my heart.

Breathing was difficult enough as it was, along with swallowing. And speaking was not possible. Because it was a transoral surgery, the entire floor of my mouth had been pulled open so that the sublingual gland, along with the ranula and what turned out to be a secondary cyst – not a tumour –  could be successfully removed.

This left my tongue and the floor of my mouth, right down into my throat, swollen. And all passageways swollen near-shut.

The first night, either due to the variety and quantity of drugs in my system or the lingering trauma (or perhaps a combination of both), was consumed by nightmares of suffocating.

It was a repeating dream of being trapped in a pitch black, square room without escape. The atmosphere was sweltering, the floor and walls burned to the touch, and the air was thick and heavy with heat. Each breath I managed only served to choke, burning my lungs with thick, sauna-like air.

The duration was spent frantically searching for an exit, while every laboured breath drew increasingly less oxygen until reaching a point of suffocation akin to having one’s mouth and nose saran-wrapped off. I violently sucked for air, but nothing came.

It was that point when I’d wake up, screaming, and physically gasping for air, before drifting unconscious again to repeat the horror.

I’ve been in isolation before, bet rarely felt so isolated. I couldn’t talk, so couldn’t describe what was going on, and no one seemed particularly concerned. They may have been working off the assumption that this was another “Nah, she’s just fine” moment, as they (almost) always are, which is why I go out of my way to forewarn of the possible occurrences.

But this one time, it wasn’t one of those. At all. And I had no one, save for the small, carved elephant clutched in my right hand — a precious something my mom brought up from the quirky little gift shop floors below.

That night was hard.

Eventually I landed on a burn unit where a different approach to the not-responsive-to-narcotics pain was taken, and eventually brought under control. The next step was to get the swelling down enough to allow for swallowing of both medications and fluids, to maintain pain control and hydration without an IV, which would allow for discharge and ensure a successful return home to start tending to the neglected gut.

Why ‘neglected’?

No one here was equipped to deal with the intestinal situation or specific demands of the gut, and too long without proper attention runs the risk of triggering a state of dormancy (again) which would be rather unhelpful.

But the gut rode things out remarkably well, and other than a respectable half-pound loss, the body performed beautifully in maintaining its mass.

It’s convenient that my diet already consisted entirely of either liquid or fully blended/pureed everything, so there were no major adjustments to be made or inconveniences experienced in resuming the nutritional intake.

And as the first half of 2016 made undoubtedly clear, that’s going to be the diet I must to adhere to for the long term. And by long term, I mean permanently.

Forever.

My gut has reached the maximum point of recovery in function, in its ability to process, digest and absorb food/nutrients, as it’s going to achieve.

January to June were focused on weaning off the round-the-clock intake regimen, slowly transitioning to less-processed foods (and by less-processed, I mean still whole foods – grains, fruits, veggies, meats, etc – but not cooked down and then further pureed before consumption) in hopes of resuming a normal manner of eating.

Or, at least, a somewhat normal diet.

The trial-and-error process took a toll on the weight (which was expected) as the intestine struggled, and failed, to adapt to the more-normal state food. It simply couldn’t make use of the less-refined status of nutrition offered. Even the extent to which vegetables and grains are cooked down affects whether their nutrients are adequately absorbed or not: Not soft enough before being blended, and the semi-functional intestinal lining cannot process it further.

Same goes for fruit. If not adequately ripe before being blended down (if not simply cooked first), it passes through the gut untouched.

Everything will always have to be blended down before consumption, and that will not change.

But!  I can eat. And I can rely on oral nutrition to survive rather than the alternative of life on TPN  – that IV line to the heart – and that’s what matters.

Because of the extent of scarring both outside the gut and throughout the (remaining) intestinal lining, the threat of obstruction is forever high. Adhering to the pureed intake also ensures I will not obstruct, which means I will not lose any more precious small intestine.

Which, were that to happen, would force me onto TPN, because the gut would be too short to sustain health. Or life. The current weight regain is made all-the-more difficult due to the short-gut syndrome I already have, so you can understand the degree of acceptance on my part.

The dietary experimentation, necessary as it was, was physically exhausting and mentally trying, as it slowly drained the body of the nutrition I’d spent some time working to restore, and cost me a handful of hard-earned pounds I’d regained.

The beginning of June brought an end to that interruption. I gave the trial time and an honest effort, and now it’s known for certain where the gut stands. Though it’s not ideal and is far from normal, I’m perfectly fine with the outcome.

I think others are more upset, or seem far more bothered/concerned than warranted, at the thought of a life adhering to such a way of eating. The thing is, it’s been my normal for some time now. I’m used to it, and I’m OK with it.

Most importantly, though, it provides the nutrition I need in a way my body can use — it keeps me feeling physically well and strong, and mentally sharp, and it’s what will ultimately see me achieve the complete physical recovery.

And regarding that recovery, for the many who’ve asked: All things considered, it’s going well. Yes, there are areas which continue to challenge, but I consistently end each month healthier and stronger than I began it.

The things that bother, bother much less so, and when they infrequently do, they do so with increasing predictably, which makes them endurable and work-though-able.

That said, the single thing which stands apart from the rest, which has remained stubbornly resistant to improvement, is my apparent inability to exist as my current, not-yet-fully-healthy self.

I thought the self-consciousness would wane with time; that the healthier I became, even if not fully well, the more confident in my physical presence I’d feel. But the self-hate has only gotten worse, to the point where it’s become a battle of anxieties at the thought of going anywhere, even with friends, because it’s just so hard to be seen.

There are days when I take Brio to the off-leash park and, instead, walk her leashed along the pathway surrounding the fully fenced-in area to avoid having to see people. Or, rather, to avoid having them see me.

What’s the problem?

There’s shifting hyper-pigmentation on areas of my face (right now, mostly around my forehead and cheeks) from the repeated contrast injections, the thyroid abnormalities and hormone insufficiencies – recently brought under control and managed – which may or may not fully correct itself with time. I’ll meet with a dermatologist in July to see if there’s anything topically that can help should the body not be able to right itself in the end.

Is it terrible? No. But it weighs on me. Terribly.

There’s the loss of my once thick, long hair from the periods of severe malnutrition, that will never grow back the way it was. Though there’s still plenty of time for regrowth, it’s not knowable just how much more (if at all) the hairlines will fill back in, or how much the rest of the head will thicken up.

I’ve never fussed over my hair. Ever. And until recently, never felt the need to explain why it’s so thin, and lacklustre, and generally unlovely.

The growing insecurity had led me to apologize to everyone for the stage of recovery I’m in. In fact, because I was not familiar with the nurses and residents involved in this latest surgery, each introduction was followed by an apology on my part for looking so terrible.

And I still cannot meet with people without pre-emptively apologizing for not looking like my well-self just yet, and cautioning (whether warranted or not) that, in my view, I look horrible, and I’m so sorry for who I am – or how I feel I appear, I suppose – at the moment.

Why? Because I feel so goddamned hideous.

This deeply personal unease is something I’ll continue to work toward find better ways of managing, as the current approach – not dealing with it – hasn’t exactly proved a success in alleviating the discomfort.

All that aside, where I have been able to hold onto some confidence is in my smile. And thanks to the incredible generosity from the wonderful people in my life – from those I’ve long-known, those I’ve come to know, and many more who I don’t know at all – I’ll keep it forever.

It won’t be exactly what it was, or at all perfect, but the major surgeries and grafts are done and healed, and the provisional structure over the grafted area is in place, along with interim protection over all the other teeth on the top.

Once the healing is done from last week’s transoral surgery, treatment will begin on the lower teeth, building up the structure on each individual tooth to replace the absent enamel. If there is root weakness or bone thinning along the jaw, that’ll be addressed at it’s encountered — root canals, crowns, etc. and minor grafting if necessary, but nothing to the extent of what was initially required along the upper palate.

After everything is fully restored to health on the bottom and the bite feels comfortable, the upper provisionals will be removed and the final, strategic implants and structure across the graft will be permanently placed.

The revised timeline goal is to have this entire dental/oral treatment complete by the end of this year, but it may stretch into the front half of 2017. It all depends on how this surgical healing goes, and whether further grafting will be necessary on the bottom.

Project Smile currently stands at just over $51,000 of the required $80,000 cost, so even if I’m unable to raise any more funds to finance the cost (final payment due before the conclusion of treatment) I know I can at least secure the remaining amount through another medical loan.

So, to all who’ve donated: You have saved my smile.  No matter what happens now fundraising-wise, you’ve ensured this treatment will be complete. Which means you’ve saved me from an additional, chronic health issue to wrestle with down the road.

And that means everything. And that matters most. It will make life, all else considered, so much less terrible than it could have been without your help here.

The second half of 2016 will be focused on concluding all treatments, and reaching as close to the target weight as the body will allow. The regain and rebuild isn’t easy, but it’ll be a priority once again now that the diet is forever settled.

And that’s as full an update as I can offer, I think.

I can say with certainty that I’ll be back in Ontario before too long, as the house I’m in will need to be sold to pay off outstanding medical debts. Possibly much sooner than later. But I have my home in Wyoming to return to where I can regroup after this is all over and map out my post-recovery future. What will come next, or where I head after that, I haven’t a clue.

I cannot go anywhere until both treatment and recovery are complete, though. So for the next while, that’s where my primary focus remains. Though, if I’m honest, that uncertainty beyond the recovery is intimidating.

But it’s something I’ll deal with as it comes, which I try to do with all things beyond my ability to control: Control what you can, adapt where you can, and when you cannot do either, manage as best you can.

Right now, with everything, it’s a daily mix of all of the above. And I’m getting through  the best I can.

Direct link to Project Smile, for more information, or to contribute: www.gofundme.com/apsmile

 

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