On life, death, and grief

When it comes to mortality, I’ve wondered what could possibly be worse than the horrifying inevitability of death. The answer, it seems, is the death of someone who matters most, who you love so profoundly and deeply — someone you’d give your own life for in a moment, who you cannot imagine being without.

That someone is my grandmother, and very soon, her incredible life will end. I don’t know how I’m going to exist without her, and if I’m honest, there are moments I’m not entirely certain I want to.

What happened was sudden and could not have been predicted or prevented. Had it happened to a younger woman, the body would have had more of an ability (or a chance) to recover. But a woman in her 92nd year of life, as fit and healthy as she was, simply couldn’t withstand the massive stroke and subsequent seizures which resulted in a sustained brain bleed.

Over the past week on a stroke recovery unit, after having spent the previous week in the ICU, she – and we – worked so hard to bring her body back, to regain use of her right side, her ability to speak and swallow and breathe. But what small gains could be made simply aren’t enough to sustain life.

Her body cannot recover.

I’m grateful for the time we had together last week where, hour after hour, we quietly held hands as I stroked her hair and, when not kissing her beautiful, soft cheeks, I simply held my own cheek to hers each time a quick tilt of her head beckoned I do so.

Even in silence, through her deep, purposeful and powerful gaze, she said so much. The considerable energy spent putting words together were to tell me she loved me and call me “kotki” — kitten in Polish, which has been her special name for me since forever.

When people matter to me, they matter. Those I welcome into my life will matter for different reasons, with relationships ranging from entirely professional to deeply personal.

My grandma, for so many reasons, has always mattered most. That will never change. She considers me her daughter, and I look to her as a mother. We are the very best of friends.

I’ll write much more about her in time, and detail just why she and I share what we do. I’ll do my best to introduce this remarkable woman to those who didn’t have the privilege of knowing her firsthand.

Right now I’m grieving, and getting through as best I can. Which is to say, I’m having a very hard time, and my heart hurts in a way I’ve only experienced in nightmares – nightmares about her dying – but there’s no waking up from this anguish. It’s brutal and destructive and overwhelming. I don’t know how to work this through, and no one can offer guidance or reassurance because the only reprieve for what’s happening is for it not to happen — and that’s not an option.

The only way out is through, and I know it’s going to get harder for a while yet. Though hard to believe at the moment, I do know logically this sorrow will, in time, become a little lighter. Become bearable, even, in a way that, right now, it’s certainly not.

I had to return to Calgary this week for my own medical things (on my way to the hospital to see grandma, I got a call on my cell to come in for testing on my heart…) and I will find out Thursday when I can return to Ontario for a solid few weeks, or until everything plays out. If not this coming weekend, then certainly before next. My doctors are working hard to make this doable.

Palliative care is helping transition grandma home where she’ll live out whatever time she has left surrounded by friends, family, her kitties and her gardens. She’ll be out of hospital and back where she’s at peace tomorrow, and I will be there with her, by her side again, just as she wants, as soon as I can.

I know there’s nothing unique about this. Death is inescapable, the accompanying grief a universal experience. Life will go on, as it does and should, for everyone else. I’m just unsure of how to resume my own without her in it.

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Learning to live with the body you’re in

I didn’t expect the amount (and sort) of private feedback in response to this piece for the Citizen, but it’s encouraging to know people feel comfortable in reaching out and asking questions. While unfortunate so many hesitate to address these matters openly, I understand that apprehension. It’s an incredibly personal thing.

I, however, feel a duty to help where I can. Over the years, I’ve spoken at athletic conferences and provided feedback to coaching organizations on how to effectively push a vulnerable athlete without damaging them, and how to address things like body insecurity without coddling. I really don’t mind being candid, I’ve just never really had cause, to now, to write specifically on the issue.

My own background on this, for those unfamiliar and who asked for a bit of a recap on where I come from on the matter, can be found beneath the main points addressed.

First, the Carleton scale controversy:

I come at this specific issue with an understanding of the mindset which drives eating disorders and the experience of what feeds and perpetuates insecurities. I was both a coach and a mentor to young female athletes – developmental (pre-competitive) stream – and served as a conditioning specialist for the younger high-performance competitors. In that capacity, when issues around body image or weight arose, I tried to act as the sort of figure I wish I had available to me early on.

To be clear, though: Eating disorders are quite individual and unique to sufferers, and are a mental illness. That requires professional help. While you can’t prevent someone from developing an eating disorder if that’s destiny, you can avoid playing a role in it.

So, to answer a number of questions about Carleton’s initial decision to remove its scale, and the broader question of how the fitness industry fails people – whether they’re overweight and struggling with body image or dealing with some sort of disordered thinking around food – on the weight issue:

The scale can be a problem in gyms when it comes to forced weighing. Many athletic centres require an ‘assessment’ (weight, body composition profile using sham devices and questionable methods) if a client signs up for personal training. That’s a problem. If someone does not want to be weighed or measured, they should absolutely not be pressured into doing so.

The best measure of progress in the gym is performance. Be it cardiovascular gains, strength gains, improved flexibility, agility, balance — all are trackable without a scale or tape measure.

In my view, scales are important. The gym scale, however, is largely useless for precise monitoring. For a true weight, you must step on a scale in a fasted state (first thing in the morning, for instance) in the nude. That’s your body weight. When you’re weighed (or weigh yourself) at the gym, what you’ve eaten during the day, how well hydrated you are at that moment, the brand of shoes you’re wearing, your workout attire, will all affect what the scale displays.

That’s not reliable.

If people choose to monitor themselves that way, fine. It’s a quick and relatable measure. But it should not be forced on anyone. And as I mention in the piece, the scale is of limited value, as the numbers provide zero insight into fitness.

If someone, over the span of a month at the gym, loses 5 pounds, great. But — what have they lost? Weight loss is not fat loss. If the weight lost was primarily lean body mass, they’re no better off, no healthier or fitter, than they were 5 pounds heavier.

So it’s not wrong for Carleton to have encouraged a shift from focus on weight. The problem is they didn’t offer any legitimate reason for yanking the scale, and didn’t seem to understand the danger of suggesting girth measurements – which change much slower than weight does and often causes greater anxiety – as an alternative.

Even with the decision reversal, those who use Carleton’s athletic facility are no better informed, or better off, than they were before the whole mess.

Next:  What’s better than “body positive” in addressing body image and insecurities? And how can you help someone lose weight or improve fitness without seeming to body shame or feed an eating disorder?

It’s a fine line to walk, but it can be done. What’s key is to not compare any one body to any other.

Ever. Ever ever ever. Got that? Don’t do it.

Each person is built differently, and their genetic code will determine how quickly (or not) they respond to a given exercise or training regimen. And so many factors, right down to bone mass, play into what one’s body will ultimately achieve.

Whether it’s someone who’s overweight in the gym hoping to slim down or an athlete training for a specific cause — each person has a baseline in performance and body composition, and improves from there. The only comparison should be from the individual’s previous day, or week, or month, etc. If there’s been an honest,  sustained effort and change doesn’t happen, then you tweak the program. You don’t compare to someone else’s results.

And it can’t be stressed enough: the gym is where health and fitness are gained. The kitchen is where weight will be lost or gained. You can’t outrun a bad diet, nor can you improve athletically on a paltry one.  Food is not an enemy, it’s necessary fuel. Understanding proper nutrition – which means not demonizing any specific food or nutrient (see: carbs, sugar, gluten, etc) – matters.

As far as body image is concerned, what’s better than some never-ending quest to achieve Full Body Positivity is developing a sort of body literacy. No one has to love their body, and not everyone will, but it’s important they learn to live with it. And understanding what one can and cannot control helps alleviate some of the self-hate, and sometimes guilt, over not being able to be or achieve what they think they should.

Of course in direct athletic competition one person will come out ahead of another. But in the gym, and in training, the focus should always be on achieving, and surpassing, one’s own best.

Knowledge really is power in so many areas here. Education is key. The problem is, those doing the teaching are often terribly uninformed themselves on these issues, as evidenced by the athletic department’s move.

—————————–

My own history: 

I was very young (onset, age 11) when I developed a severe eating disorder (anorexia) which was compounded by a sort (not one most associate with the term) of OCD. The two played off one another, and it’s that specific OCD – a personally unkind and unforgiving brain – which fuelled a sort of relapse, albeit brief, at age 14. I needed to get a better handle on that, and with further guidance, I did.

Full recovery, for me, was only possible because of the relationship and trust between myself and my dietician. It required brutal honesty from both sides, as well as ongoing dialogue to address things as they arose.

For me, directly challenging what my young, frightened mind insisted was so, trusting the guidance from my dietician and, with her, working though the anxiety of the treatment and recovery process until the results disproved those fears, was the answer.

During that period, I often wished that I could just eat anything without ever gaining weight. How wonderful that would be! And apparently, would somehow resolve the relentless hate I always, from my earliest recollection, had for myself and my body.

It’s a shitty irony that so many years later that nonsensical wish would become a reality for a time, and almost kill me.

Why do I care so much about fighting stigma around mental illness?

Because it’s the stigma from having had an eating disorder early in life that prevented my then-doctor from taking it seriously when, heading into my 20s – a time I was entirely healthy, excelling athletically, and so very happy – my intestines began to fail, and the first symptom, weight loss, was assumed to be something else.

That intestinal disease had nothing to do with my childhood, but was a genetic inevitability. It was only a matter of time before it fully manifested, but if treated promptly and properly when it did, it would have been entirely manageable. And my life, for the most part, would have been completely normal, and continued along its intended track.

Instead, medical malpractice allowed the disease to progress and destroy a good part of my intestines which, after proper diagnosis and a second-to-none team of experts, resulted in years of treatments and surgeries and intestinal rehabilitation, including the removal of a good chunk of my gut, piece by piece. (Gut being intestine, not stomach, as most associate that word.)

Then, after rebuilding physically and athletically from absolute emaciation, what was to be a final (and quite major) intestinal operation in 2013 ended in disaster, and almost killed me — again.

And I had to do the intestinal rehab again, and rebuild the body again (made more difficult with a number of medical setbacks relating to various organs, as well as further intestinal surgery) and learn how to live with an even lesser-functioning, ever shorter gut.

That’s the recovery I’m nearing the end of.

Life to this point hasn’t been easy or gentle, but it had no obligation to be. I do try to make the best of things, though, and that includes using my experience to provide insight or knowledge on different matters when asked.

I hope I’ve been helpful to someone here.

On Getting Through

I understand why people react to others’ accounts of living with (or overcoming) mental, emotional, or physical hardships with words like ‘brave’ or ‘strong’, but it’s important to keep in mind that each person’s unique history helped shape their ability and approach to getting through a personal challenge.

No one is weaker or stronger, braver or less brave, than any other. No single person can or should be used as a standard or ideal for how (or, barring self-destructive behaviours, how not to) manage.

That said, because many had asked, here are the guidelines I set out for myself years ago, copied word-for-word from a journal, which I continue to hold tight to.

I have my reasons – my own history / experiences, upbringing, inherent attitude – so anyone reading who does things quite differently, know this is not commentary about you or your way of dealing.

There isn’t a right or wrong way — there is only the right-for-you way.

That’s something you have to craft and discover for yourself through trial and so much error. But there is a way for everyone. It just takes time and an honest effort to settle on it.

Here’s my personal guide to living as best I can despite all else.



You are not special.

What you’re going through is unique to you, but everyone deals with hardship – physical, mental, emotional – at various points in life. Don’t allow anyone to feel they should be particularly gentle with you.

You are strong, and resilient, and should seek to be treated as such. Embrace being challenged, welcome confrontation. You’re a capable woman, you don’t need your hand held.

Welcome empathy, appreciate compassion, but reject pity.

Don’t make excuses.

Be honest with yourself and those around you with what you can and cannot handle at a given time. It’s OK to request leeway when absolutely warranted, but the use of hardship  as a crutch will, over time, atrophy the resolve.

Resilience, like muscle, must be exercised regularly to maintain its power. And like a muscle, it too requires periods of rest for optimal performance.

Request space or time when mental or emotional fatigue sets in, but do so out of necessity, never habit.

Own your shortcomings.

If you’ve allowed personal frustration to slip over to your interactions, if you unfairly attack, criticize, or demean someone or something simply because, at that moment, venting felt OK — apologize.

That is your failure and no one else’s.

Accept that, despite your best efforts, this will happen from time to time, but don’t let it pass without owning it and making amends if you can.

Learn from each time you fall short here. It weighs on you afterward for a reason.

Do something.

On the hardest days, when the biggest achievement may well be having made it through the brutal 24 hours, don’t succumb to paralysis.

Find or create some purpose, no matter how trivial, to help get through to tomorrow.

The trauma and panic/anxiety will command the day regardless — do what you can in spite of it.

If you need to cry through every moment of doing whatever it is you settle on, that’s fine.

But never do nothing. Do not dwell.

Reach out.

There will be moments when you’re overwhelmed. That’s not weakness or failure — that’s human. It’s OK to lean, even if just for a moment, on the shoulder of someone you trust.

The times you cannot be alone, don’t be. You don’t need to be.

Be frank. Be honest. Be gentle.

Those seeking to better understand your experience may hold back for fear of over-stepping, imposing, or offending. They don’t know what or how to ask.

This is a two-way street. Make it easier by being available and open to discussion. When questions are asked in an awkward or clumsy manner, remember there’s no ill intent, but a genuine effort to learn.

Dedicate time and patience to these conversations. They matter.

And always be grateful that anyone bothers to care. They don’t have to.

“Tomorrow will be better.”

If today is particularly trying, remember – it’s just a day.

One day.

Tomorrow will be better.

And if it’s not, there will be a tomorrow which is. No matter how many days it takes to get there, you will reach that tomorrow.

 

Finding Enough

 

No matter the goal, everyone strives toward some idea of enough — a measurable something which grants some payoff for the effort: qualified enough to secure a coveted job; educated enough to act an authority on a matter; skilled enough to edge out the competition in a test of physical prowess.

In this quest, throughout life, we will all come up short. While some fail to achieve enough due to lack of commitment or effort, others are hindered by circumstance where, all else being equal, another was simply better suited; despite having made the most of one’s available opportunities, another had access to superior education, experiences, etc.

That inability to achieve enough due to what you cannot control is the harder loss to take.

Failing to be enough for someone else, particularly when the shortfall is something beyond one’s ability to directly change or improve upon, is crushing. That hurt, though, is a necessary part of life. Heartache is unavoidable, and heartbreak is inevitable. It’s part of how we grow emotionally and forge ever-stronger relationships.

When you’re hindered from moving beyond that sort of personal hurt, when the years normally spent exploring relationships – growing in both experience and confidence – are dedicated instead to basic survival, you’re faced with a gulf that cannot be easily bridged once life resumes.

However necessary the pause on one existence, the lives of others carry on. Opportunities expire, relationships cool, and a few who matter deeply will fall out of touch.

Though I wholeheartedly celebrate the milestones of my closest friends and family, I’m reminded daily of what I will not be and cannot offer. As a woman, I feel both inadequate and a failure, and can’t help but wonder — if I wasn’t ‘enough’ before things fell apart medically, how could I ever be enough now?

This has recently weighed on my mind and heart, but that I find cause to consider such matters is arguably a positive. It demonstrates just how far beyond mere day-to-day survival things have progressed, where I’m now at a point of mapping out some sort of future; considering the possibilities of three-, five-, ten-years down the road.

Medically, things are spectacular. Or at least, are as good as they can be. My weight is a solid 110 and holding steady, and if I regain another 10-or-so pounds over the coming year, wonderful. If not, though, this 110 is enough for my organs to remain healthy, which is key. I’ve settled firmly into my new forever way of eating which has allowed what remains of the gut to maximize digestion and absorption (see: that solid weight) and protect from further obstruction.

Though there is one band of adhesions (internal scar tissue) proving a constant challenge, chronic discomfort is all that’s come of it. And if that’s the way it remains, I can undoubtedly manage. Further intestinal surgery, should those adhesions cause me to obstruct, would be catastrophic. I can’t afford to lose more gut, and surgery only begets more adhesions.

A chronic discomfort is entirely fine.

In my last update, I mentioned a shifting discolouration around areas of my face which had become a persistent bother. Bringing a dermatologist on to my team proved a wise decision, as she was able to help properly diagnose the hyper-pigmentation, indeed caused by the endocrine abnormalities combined with the thyroid malfunction. It causes a sort of hyper-reactive pigment cell for which there’s no cure, but is entirely treatable.

For two months at a time, followed by a one month break, I apply a potent compound to the affected areas to break down the pigmentation, and over that I slather the strongest available sunscreen to prevent as much light from entering those cells as possible. This helps keep them dormant, as those cells are primed to flare and any UV penetration will trigger that reaction.

After the first three-month cycle of treatment, the areas of abnormally-darkened complexion were completely gone. It proved an incredible relief to know this nuisance will be so easily managed.

I had my final ENT follow-up, and my surgeon was quite pleased with the outcome of the tricky operation I wrote of last. That surgery ran a significant risk of me losing sensation (both feel and taste) on areas of my tongue or damaging key nerves. But all seems to work as it should, and there’s been no indication for need of any further treatment here.

There is, however, some lasting impact from that unexpectedly difficult experience. For whatever reason, the brain latched onto the taste and smell of the gas pumped through the mask just before IV anaesthetic is administered, and has since associated that distinct taste/odour with the collective hardships of that particular surgery and its immediate aftermath.

So when it emerged there was a significant setback in the Project Smile treatment, one requiring another aggressive surgery, what bothered me most (of all things) was having to deal with that gas.

Medical trauma presents itself in the strangest ways.

It was the summer months when an otherwise-routine scan – prompted by one just-treated tooth which, in the end, would require a root canal – revealed the main bone graft, the primary surgery which set the entire Project Smile treatment in motion, had failed unexpectedly.

There hadn’t been indication of a problem – no pain or discomfort – but for whatever reason, a good portion of the graft was resorbed by the body. That is, the large section of diseased bone which was replaced (and area rebuilt and solidified) has been broken down and absorbed. It’s something that can happen with grafts, but was not expected to happen here, or at least not to that extent.

It was a frustrating blindside.

My oral surgeon dedicated a great deal of time to reviewing my case and weighing the options of how best to proceed toward that proper, lasting and permanent fix, and in the end presented this way forward: He would open up the area, prepared to aggressively re-graft, repair, restructure and rebuild with the help of special synthetic material, but would only proceed if there was enough of the original graft remaining to build upon and work with.

If there was too much resorption of the area, as an MRI had suggested, he would remove the underlying implants and structures solidifying the area, close me up, and rebook to do a from-scratch re-graft, but would take bone generously from my hip.

We proceeded hoping for the best possible scenario but were both quite prepared for the worst. For once, though, surgical fortune was on my side.

There indeed remained just enough of the original graft for my surgeon to work with, so he was able to proceed as throughly and aggressively as hoped. The surgical team were prepared for the going-under difficulties, and they helped make it as smooth for me as they could.

Everything went incredibly well, and the latest post-op scan showed just what a tremendous success the surgery was. It bodes very well for the treatment outcome.

I’ll have another small procedure in February which we’re going to try without general anaesthetic. We’re prepared for my body to do its going-into-shock thing, but I’m determined to work it through because right now, having to smell and taste that gas is the bigger bother.

Pain, I can deal with.

In March, should all heal as hoped, the work over the graft can begin again, and come fall or winter of 2017, the entire Project Smile treatment should be complete — as will the overall recovery.

Meanwhile, the athletic rebuild and physical recovery continues to power along. My heart and lungs feel incredibly strong and respond without hesitation when I challenge them, and my body is muscular and increasingly powerful once again.

There remain restrictions — I’m bound by the gut in timing (there’s a window between two specific meals where it’s settled enough to be truly active) and must adhere to a limit in frequency/duration to ensure adequate rest for a body which no longer stands to benefit from going that extra mile.

But I make the most of the time I’m allowed, and it’s heartening to see results which reflect my efforts. In terms of ‘enough’, I am again enough here.

Physically, as an athlete, I am enough, and I’ll only continue to make gains. With sport, there’s never an end to advancement, there’s always room for improvement. And that steady, measurable progress is profoundly therapeutic.

To be physically frail is to be intensely vulnerable, and that sense of weakness – a complete and utter helplessness – is horrible. It’s how you feel when you’re dying, and how I feel in the recurring nightmares of varying states of emaciation and confrontations with death.

When I develop a fever or catch cold, where others can simply make some tea and toast and snuggle in on the couch, my brain immediately flashes back to that frail state and I’m consumed by the death-panic.

When I physically push my body to its limits, force it to perform and behave athletically in the ways I demand, I take back control. I may never again complete in any sport, but athleticism continues to be an integral part of my emotional recovery and mental well-being. I work alone and quietly, and I work hard. Those precious hours are my outlet and my escape, and when I feel I don’t belong anywhere else, I still belong there.

There is reason and purpose — and so much comfort in being enough.

I’d hoped to branch out here in 2016, to write about various things that matter, explore what worries me and why, and maybe help explain why some experiences stubbornly linger as other moments fade without second thought.

The year was far heavier medically than anticipated, so dedicating time and emotional energy to that idea wasn’t feasible. 2017, though, will be different. It WILL mark the end of recovery and treatments, and I will have the time and cause (and will find the courage) to write more here, beyond mere medical updates.

I always worry, though, about ruining things (what things? I don’t know) by writing here, or writing about myself and my experiences. I worry that those who read will feel different toward me; I worry about making things awkward when they needn’t be.

This is just a space for me to write things through. A non-physical outlet.

Still, I worry. But I also trust — trust that those who read will understand, and forgive, and accept me just the same.

And perhaps, for all my shortcomings, find I’m somehow still enough.

If you’ve made it this far, thanks so much for being here and for reading. I look forward to continuing this journey with you through 2017 and beyond.



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

 

 

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

 

For 2016

When you find yourself isolated, removed completely from those you’d normally see in day-to-day interactions, the solitude is liberating… and somewhat overwhelming.

Being entirely on my own now in Alberta is, truth be told, rather enjoyable. I like my space, and I feel at ease when alone.

That said, routine, as mundane as it seems, has a way of moving things along. Even if it’s just a going through of motions, there’s purpose. A thing to be done, however grudgingly.

There’s reason.

And while the brief holiday break from the medical was a welcome one, it provided much time to reflect (too much, I think) on where I’m at in life, and consider where I’d like to be (or at least, weigh the possibilities) once treatments and recovery wrap up in 2016 — assuming things continue on schedule which, so far as I can tell, there isn’t any reason to doubt.

I thought about this space, and whether to continue writing here or not. Things were a bit chaotic when I penned my last update, and I simply waited too long between posts to allow for proper attention to each section discussed, instead cramming in as much as I could without proper care.

I was surprised by the feedback, by what people wanted to know more about. “I wish you’d written more about the wedding” was a common one. Even from family: “People have no idea about x.  You should have focused on that, written more about that.”

I’m not sure why I’ve pulled back on recounting experience, opting to write privately about so many things and simply tossing it in the draft folder.

I suppose I don’t want to be a bother, or make people uncomfortable should I detail something lived that, to me, is just another part of my greater story, but might be upsetting to read about.

I worry about being looked at as damaged, or as one in need of pity — I’m not, and I don’t.

I worry about who might read and what s/he might think; I worry about those who matter to me, who I’ve come to know, thinking differently of me.

I worry about saying (or writing, I guess) the wrong things, be it too much detail or not enough, about wording things the wrong way, or coming across as a woe-is-me sort, or as writing for any reason other than to simply write.

I work things through, through writing; I write the misgivings out.

I just don’t often publish, in part due to the reasons outlined above. But I want to grow as a writer, to improve on my craft, and that’s not possible without getting into the habit of writing (to be read) more often.

As the medical things wind down, I’m going to need to establish a new routine; find a new groove to fit into. And this space, I think, will be helpful in the transition over the next year and beyond. The last update was heavy on the technical, but there won’t be more of that to add. Aside from the occasional update on measurable progress and ticking of the boxes, or the occasional incident, there shouldn’t be much to chronicle, which provides a perfect opportunity to begin to evolve how and when and why I write in this space.

Though it’ll remain where I post everything medical, I like the idea of moving toward a more casual, personal exploration of experiences and examination of events. A place to write when I need to write, or when there’s something to post about. Which, I guess, has always been an option here. Just, it was never the mindset I’d had — and I like that certainty. That definitive structure.

That explicit reason.

I’m not one for end-of-the-year resolutions, but I’d like to begin 2016 with a fresh outlook on writing; move beyond agonizing over my choice of words and become comfortable with simply  having written.

I want to write with purpose, but allow for imperfection; I’d like to write about things that matter to me, and trust that those who matter will forgive the inevitable shortcoming and allow me to fumble my way through.

I’m not certain who continues to follow here, though when I write I do keep a few people in mind. But if you’ve made it this far, and you plan to continue along with me, I hope you find substance in what I write and maybe, in some way, find value.

I’m still searching for how I can best contribute to the world, given the circumstances. But if you’ve been able to take something away from what I’ve shared here to date, then continuing is entirely worth it.

Words, for me, hold great meaning, and I’ve long cherished Rudyard Kipling’s IF — a poem rich in wisdoms I strive to live up to.

In recent years, I’ve held particularly tight to this section of the verse:

“If you can force your heart and nerve and sinew
To serve your turn long after they are gone,   
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’”

Heading into 2016, a year expected to bring finality, transition, and new beginnings offline, and a sort of evolution here at TMI, I’m going to strive for the following — my own footnote to IF:

If you can embrace the future as uncertain 
And rise above the damage done, 
And find some purpose in your burden 
The illness, then, will not have won.

See you in the new year.

A Taste Of The Future

I’ve come to approach this home stretch of recovery they way I performed as a dancer — one who’d always mastered the steps, to whom technique came second-nature and execution was essentially autonomic.  No matter the degree of difficulty a given routine maintained, the execution made light of the intricacies and complexities involved. The ability to present an  effortlessness, to mask the physical demand, is the mark of professionalism, and it’s an manner I’ve tried to carry over in communicating the recovery outside of this space.

What happens offline I do try to keep offline, separate from the social and political, and far from anyone else’s mind. But I know in recent months I’ve allowed some of life’s frustrations to slip over into my online interactions (explained below), and that’s something I’ll continue to work on in these final months of treatment and recovery. So if you’ve recently felt slighted or neglected at my hand, know that it’s my failing. It’s nothing you’ve done or invited. It’s entirely on me.

Meanwhile, if you’re one who follows closely but find yourself surprised by something written here, it’s not because you missed something. It’s because this is the only place where I’ll have gone into detail about the past number of months – that ‘keep the offline, offline’ approach, unless specifically asked. (In which case, I’m always happy to answer.)

Given all that’s unfolded since the last update, I think I’ll approach this post a little differently: You can skip to your preferred section of interest, or simply read straight through. But I like to provide as much detail, prefer to go into as much depth as possible (or as necessary) in everything I write, and the medical / personal things are no different.

For ease of reading (and writing), I’ll take this in three sections:

  1. The oral/dental: treatment + details of Project Smile
  2. The overall medical: greater physical recovery/rebuild, the gut, the reproductive/endocrine
  3. The personal:  the challenges, the wedding, the future.

I’ll also include some photos to close out this entry.


The oral/dental:
Highly technical and probably boring, so it’s OK if your eyes glaze over a bit here; it explains this entire treatment: what’s been done, what Tuesday’s surgery entails, and what remains.

The crucial (and most invasive) first oral surgery went remarkably well, as did the entire healing process. The diseased area of bone was removed, bone grafted from my jaw to rebuild the upper ridge, and extractions made where necessary to fully graft deep into / restore the area of localized osteoporosis. It was an extensive undertaking and a number of follow-up procedures were necessary to clip away exposed bone and encourage tissue growth over the area.

But things healed better than anyone expected. With the gut co-operating, absorbing at its most optimal capacity, the body was able to take to (and heal from) the graft without issue.

The relief that surgery brought was immense. I didn’t need to touch painkillers (beyond simple Motrin) post-op because the surgical pain was minimal compared to the daily, unrelenting ache caused by that underlying osteo deterioration.

Now without that constant ache, though, I feel the other areas needing attention. I notice the complete absence of enamel, and exposure of the dentin, throughout the mouth. One positive of being tied to the pureed diet is that I can somewhat avoid contact with certain teeth while eating. (And I’m always, always eating) Be it sweet, hot, cold, sour — everything causes sharp, lightning-like jolts down the shaft of each tooth because there’s no protection for the nerve tissue.

That will be rectified through the (comparatively to the grafting, simple) building up of tooth structure across the entire bottom row of teeth. Where necessary, it’ll be the root canal plus crown approach, particularly where the roots have weakened or become brittle (a sort of dental osteoporosis, if you will) from the repeated, extended bouts of malnutrition while the gut was non-functional and body absent of sufficient estrogens for bone/dental strength.

The upper teeth will have to be crowned, at least, as they were the ones improperly treated by the first dentist to rectify the absence of enamel and weakened root structure. If a root canal is necessary for the preservation of tooth strength and underlying bone, that’ll be the route taken. Those upper teeth will be the next stage tackled (after Tuesday’s operation) followed by the all the lower.

And ultimately the sublingual/submaxillary gland damaged by the cyst (spurred by that underlying, now rectified, bone infection) will be surgically removed, which will bring this entire treatment to a close.

The surgery I’ll have on Tuesday will be to solidify the grafted area, remove screws and insert rods and posts to ensure there’s minimal bone resorption and see to it the entire area is provided all necessary means to remain sturdy, healthy, and strong in the future. Single tooth implants will be strategically placed to add to that underlying ridge strength and if necessary, additional grafting (bone and/or tissue) will be done.

Project Smile remains active, and for me, crucial, though support and enthusiasm has waned considerably. Which was expected, and is understandable, as this is an extended process meaning the sense of urgency, along with the desire to advocate or contribute, has evaporated.

That’s how these things go, and that’s OK. Truth be told, I’m certain those around me are donated out. I simply cannot continue to ask those who’ve given far more than I could ever have imagined – and frankly, more than I’ll ever have deserved – to help shoulder a burden that is entirely mine.

I’m not sure how to go about tackling the remaining funds needed for treatment. Perhaps a formal, proper Project Smile fundraising event in 2016 is the next step.

That’s a decision I’ll tackle in the new year. If you’d like to contribute in the meantime, you can find a link at the very end of this post.

The overall medical: the greater recovery, the status of the gut, and recent adventures through the endocrine system

The physical recovery has been progressing quite well. I’m still required to maintain the carefully constructed, strictly regimented intake cycle, but that’s what’s working,  not only in rehabilitating the gut and regaining the weight, but in preventing potentially-catastrophic obstruction, so I’ve no issue continuing to adhere for as long as it’s deemed necessary.

Though terribly abnormal and inconvenient, a recent intestinal setback served to remind just how beneficial the demanding dietary regimen has been. There was a recent, three week period where adhesions (internal bands of scar tissue) were tormenting the gut. With a simple twist of the torso I’d  find myself being impaled by phantom javelins.

When these adhesion battles occur (as they will from time to time throughout my life) there’s not much that can be done. Cruel as it seems, it’s simply a matter of waiting it out. What’s unfortunate is that in response to an adhesion assault, the gut reverts to its lazy mode. It becomes irritated and inflamed, and digestion/absorption capacity suffers. Though it was only a few weeks, feeling that chronic exhaustion – living in a body once again depleted of nutrients, a vessel both powered down and unplugged for good measure – helped me appreciate how incredibly well, all things considered, I’d been feeling once again.

I’d hit 108 pounds before the adhesion bout. By the time it subsided and the gut was able to resume function, I was back down to 104. So going forward, should my safest bet to maintain optimal wellness be an only slightly tweaked iteration of what I’m doing now, I’ll fully comply without question. Yes, everything will require that much more planning and accommodation, but I’ll be alive, healthy, and functional — three things which were far from guaranteed not so long ago.

You play the hand you’re dealt, and if this is my final hand with the gut, well, I’ll play it to the best of my ability.

Which brings me to this week and some further reshuffling of the cards in the endocrine sphere. As I’ve touched on previously, my genetic hand in life hasn’t proved a winning one in many aspects. And when seeking to salvage some level of advantage here, the odds wouldn’t have it.

TL;DR: inherited primary amenorrhea could not be addressed due to the required intensity of hormone replacement therapy, which wreaked further havoc on the gut. So it was decided to continue with HRT at just enough of a dose to supplement for what the body itself (that base amount required for general health) refused to produce. The strategy: a daily estrogen-progesterone combination, which would allow for the body to benefit from the base-dose estrogen (see: bone health/strength) without accumulation of uterine lining — key to lowering the risk of related cancers.

The problem with this approach, we found out, is that as my recovery continues and the weight increases, the dosage of both the estrogen and progesterone requires constant adjustment. This is easier said than done as it’s incredibly hard on the body, plus the ongoing flux of the two hormones battling for the upper-hand was setting off the brain, triggering panic.

Though there were only a handful of those really, intense panic episodes, being always on edge is simply not a pleasant (or particularly constructive) state to maintain as the body takes its time to sort itself out. It’s because of this internal unrest, this agitation, that in recent months I’ve been, at times, not quite myself. Either unnecessarily combative (if not downright mean and bitchy) or completely off the mark in my assessments or judgements.

I did my best to wait it out, to see if things would level off, but they didn’t. When the physical symptoms began – extreme temperature fluctuations; chronic bleeding leading to severe anemia despite supplementation; drastic changes in blood work – it was clear this method just wasn’t going to work.

For an organ which made clear long ago it had no interest in being useful, the uterus is  certainly making the work-around as difficult as possible.

After working though the options this week, seeing what the body was/wasn’t able to endure, my endocrinologist has set out a new treatment strategy which will begin following Tuesday’s surgery.

If my body takes well to it, it’ll be the forever/maintenance course to follow in terms of supplementing for genetically-driven endocrine deficiencies. If this new approach also proves ill-suited to my body, there is still a reasonable third option to pursue.

So eventually, we will land on a workable strategy here. It’s just a lengthy trial and error process, so more time is needed before I can say definitively that this area has been fully addressed.

But under the care of my incredible team, we’re getting there.

The personal: The wedding, the challenges, and the future

If you’ve followed TMI closely, or perhaps we chat privately, you know to some extent the mental/emotional toll the events of the past decade have had (individually and collectively) on how I perceive myself, where my level of confidence stands, and what I deem to be my worth. It’s not something other’s words can fix, nor one external reassurances can solve. It’s a self-wielded weapon that cuts deep.

Repeatedly. Daily.

But it’s a knife which edge dulls with time. The healthier I become, the closer to me I approach, the less damage it can inflict.

The weeks leading up to my sister’s wedding were consumed by incredible doubt and all-consuming anxiety, and I sought to give her every out I could:

You know, I’d completely understand if you prefer I play a different role, or just attend with other family.

If you don’t want me in your pictures, I will take no offence; please, feel free to leave me out. These will be your memories, after all.

If I’m going to cause people discomfort I really am OK to just keep to the back, or off to the side. Don’t feel like you’re obligated to include me in any prominent way. I will understand.

I’d worked hard, dedicated everything to the recovery, to be as healthy as I possibly could for that September date. But I knew I’d still not be at my best (a minimum 15 pounds short of it, in fact) and the somewhat crude place-filler over the bone graft was the best I could present at that time, smile wise.

I wasn’t going to bail on her, but I held out hope that, perhaps, with all the anxiety that comes with being the bride, maybe she’d decide I wasn’t quite ready for prime time and suggest I sit this one out.

While others were intent on looking gorgeous, I was just desperately hoping to look somewhat presentable, terrified I’d doom the wedding album to the back of the shelf with my presence.

I was the second bridesmaid to walk down the aisle, and while my brain harkened back to the stares in the waiting room, I saw nothing but smiles as I passed each pew. There was no disgust, no rejection, no turning away.

I was just another bridesmaid. I fit into the wedding party just fine.

I was greeted at the front pew by one of the groomsmen with a giant, welcoming smile and outstretched arm. I finally let my guard down, broke into a smile of my own; I took his arm and we made our way to the assigned seats.

That was the moment everything changed. I was at ease, knowing I passed as just another face in the crowd. I felt normal — not ill, not recovering, but just normal, for the first time in ages.

And it was wonderful.

The entire experience: the wedding, the reception, the reuniting with friends and family I hadn’t seen in some ten years, did my heart so much good… and and took a good amount of edge off that knife.

Though a far too short reprieve from everything medical, that trip home served to remind that yes, there is life beyond what I’ve been living this past decade, and yes, there is a future for me once this is officially over.

I’ve spent many years going through treatments and surgeries, working though various stages of recovery, all while half-heartedly telling myself “This isn’t forever. This won’t be forever.”

But after returning to Calgary following the wedding, stepping immediately back into everything medical, I finally felt – truly honestly believed – that indeed, this isn’t forever.

Forever exists across the finish line, on the other side of recovery; and that forever is not only within sight, but now firmly within reach.

This coming year, 2016, mid-to-end, will mark that new beginning. At some point over the next 12 months, guaranteed, I’ll step confidently out of recovery, and firmly into my future.

————

A peek at progress made to date (click to enlarge): Two shots from the wedding in September.

 

The Bridal Party

Screen Shot 2015-12-04 at 2.21.09 AM

Mother-And-Her-Daughters Dance

 

 

If you’d like to contribute to Project Smile, or would simply like to learn more, click on over to gofundme.com/apsmile

Securing The Line

What I’ve come to appreciate about writing here – about having this safe space dedicated solely to the medical, the intimate, and the personal – is the ability to gradually expand on the backstory; to provide a more complete picture, a better understanding, of the entire medical journey.

It was a wrenching decision to publish the visual timeline, but I know that for those who’ve not lived it, to fully grasp what I’ve experienced, those raw, unvarnished images were necessary.

Beyond that, the photos can serve as a point of reference as I revisit those years, touch on events which shaped my current approach to recovery, transformed how I perceive myself, and can help shed light on why, as difficult as the physical aspects of recovery have been, what’s proven a far greater challenge than rebuilding the body is rebuilding the confidence.

Paramount to this recovery has been the matter of trust: Trust in my medical team, trust in the process, and trust in my body’s ability to persevere. Had I not been through the intestinal rehabilitation process once before, the past two years would have been far more daunting than they have been. That’s not to say the process to this point has been heartening, but knowing what to expect — keep challenging the gut, keep forcing it to deal with what it cannot, and the intestinal lining will slowly regenerate, the gut’s ability to process nutrients will return, and the physical recovery will follow — allowed for a certainty I was without in the previous go-round.

I knew it was only a matter of time before the gut kicked in, but waiting for that moment – pouring myself into the recovery day in, day out for two years without once deviating from the plan, to no avail – was excruciating.

The series of setbacks,  each which saw gains months in the making lost in a matter of weeks, had me blaming myself for my body’s lack of cooperation; I racked my mind for ways I’d somehow sabotaged the process.

When I’d become restless, agitated by the perpetual stagnation, I’d revisit emails between my gastroenterologist and myself from 2008, when the initial phase of the (first) GI rehab was rife with backward momentum. As the caloric load climbed, the weight still continued to plummet.

I wrote: “This is it, isn’t it? My body is going to starve itself to death. It’s too late. We’re too late. It’s only a matter of time.”

I received a reply of reassurance, told this was expected and that soon the tide would turn. “The deterioration of your gut didn’t happen overnight; neither will its revival. You must give it time. Trust in the process.”

It was following the pneumonia/sepsis – the most recent and by far, most frightening complication  – that this recovery’s momentum shifted. I’m not sure what it was about those few weeks that breathed new life into the gut, but as I recuperated from the internal toxicity, worked to regain full lung capacity of the collapsed lung, the gut – having itself suffered from the sepsis – not only regained its (at that time) still-quite-limited function, but began to improve on it.

I was once again beginning anew: every post-severe complication acts as a physical-recovery reset. And though I was roughly 10 pounds heavier (92 pounds) than I was a year prior ( 85 pounds, the previous refreshed starting point) I was still 40 pounds shy of my 2013, heading-into-surgery state (130 pounds).

Since discharge from the pneumonia/sepsis hospitalization in March, it has been nothing but progress. I’ve been able to reintroduce foods which, even when pureed, my gut had long-been unable to process, which has allowed me to rely less on meal replacements (between-meal meals in the form of Boost) for adequate nutrient uptake.

I began to chart solid measurable gains, and not just at the gym, but on the scale.

My weight is taken in a(n as) fasted (as possible) state — in my case, on the 24/7 intake cycle, the point between two specific meals (my 5-hour grace period) — and in the nude, as to control for every possible variable. Even so, as the weight began to climb without even a day’s relapse, I began to request double- and triple-checks to satisfy my mind that this wasn’t a fluke; wasn’t a temporary glitch of the scale.

As weeks turned to months and the digital readout inched closer to displaying triple digits, and after finally hitting that crucial 100(.4!)-pound mark, it became undeniable that yes, these advances were real, the gut had finally ‘woken up’, and full* recovery is not only possible, it will once again be achieved.

This recovery process will have an end, not just in theory, but in reality.

*Full recovery, of course, might not be recognized as such to those unfamiliar with what I’ve been through. For me, a full recovery means the body having regained the lost mass, (what’s left of) the gut having regained the capacity to maintain weight and sustain life, and me having rebuilt athletically, able to continue my lifestyle, even if I do so independent of any competitive sphere.

I’ve come to accept that I will forever be restricted to a fully-pureed intake. There is simply too much internal scarring, too much irreparable intestinal trauma for the resumption of even a relatively-normal diet.

Even if the gut were to somehow regain full processing ability, the threat of obstruction remains high. I’ll always battle with adhesions, but should another full obstruction hit and surgical intervention be necessary…

To quote my surgeon: “You cannot afford to lose any more intestine.”

In time, after the weight has fully returned and stabilized, I’ll be able to resume a normal-ish (not round-the-clock) intake schedule. It’ll always be a delicate balance, having to adjust according to the fluctuating status/function of the gut, but in dealing with this daily uncertainty throughout recovery, I‘ve learned how to adapt, react, and adjust when challenges arise, so  I have no doubt in my capacity to become as independent, as productive to society as possible.

I can say with certainty that by the end of 2016 (though I’m aiming for this time next year) I’ll have fully concluded this  recovery. The gains, though slow, are steady, and I expect they’ll continue apace through to the finish.

In 12 months’ time, while my appearance will have returned to normal (I’ll look like me again, the Alheli in my profile picture) how I continue to see myself, my confidence in that appearance, will require more time to heal.

The image of my 2004/2005 state of emaciation is taken from behind, but if you compare that 58-pound body to the 85-pound head shot from May 2014, I’m sure you can deduce how I appeared from the front.

Upon seeing me, people either gawked in horror or desperately averted their gaze. Every now and again, when a given memory is triggered, my mother will recall what it was like. When having blood taken, for instance:

“Do you remember,” she asked, arriving home from her appointment, “when we’d walk in for your lab work, and everyone in the room would go silent? They’d just sit and stare. Then, it seemed in unison, every head would turn away. Some faces, streaming with tears. Do you remember that?”

Yes. I remember quite clearly.

And it happened often, everywhere I went. Those reactions were understandable, though. Those are unconscious, human responses. When you’re suddenly faced with someone who’s flirting with death, how DO you react? No one wants to be seen staring, but neither does one want to be caught looking away in revulsion.

There is no proper reaction, no single appropriate response. But when you’re the subject of the scorn, repeatedly looked over with repugnance, that scathing rejection is internalized. Over time, it becomes an automatic sensation, one which encapsulates your entire being, every time you’re looked at.

Every time.

It’s why, even after I’d regained my health (as seen in the images from 2010 through 2013) I continued to feel like the gaunt, emaciated repulsive figure from ’04/05. If you ask those who know me best here in Calgary, they’ll confirm that my automatic reaction when asked to get in on a picture, is one of fear.

They’ll attest to my self-hatred, my non-existent self-esteem, my chronic sense of unworthiness.

It’s only now when I look at those ’10-13 photos that I can appreciate how healthy a state I’d returned to. How not-at-all-terrible I looked. Only now can I see how others saw me then.

That ’04/05 skeletal figure still haunts: When I have nightmares, I dream of being back in that state. In those dreams, I’m once again starving to death; desperate for help, desperate for answers, searching for food, begging for life.

Every nightmare is a relived march toward death, one which revives the surgical traumas upon awakening.

It’s those post-nightmare days where the world acts as a trigger: Any random thing can – and does – set the stage for a full-blown death panic attack. But I’ve become quite adept at managing, so I do what I can to simply get through those days, trusting that tomorrow will be better.

And it always is.

Which brings me to Project Smile.

One the few aspects of my physical self I’ve never been ashamed of is my smile. Knowing I’d lose it without the necessary intervention, the falling through of funding threatened to prove the ultimate devastation; that final emotional blow from which I’d not bounce back. Project Smile was my only hope, and had it failed, it might have become the tipping point for the mental burden.

When I said you changed everything — that was an understatement.

Suffice to say, my smile isn’t all that was rescued.

As I head into the grafting surgery this morning, the first (and most intensive) of the many procedures this treatment will entail, I’ll be thinking of all your messages, your love and encouragement, your understanding and acceptance.

Today, Project Smile officially joins the greater recovery process. And with that process now in full swing, my body finally onside, that floating end-of-recovery finish line has been secured.

And I trust you’ll be there, so we can cross it together.

The Day Nothing – And Everything – Changed

(For those seeking a quick link to Project Smile: www.gofundme.com/apsmile )

—–

When you want nothing more than to be well – to be seen as being well – after being ill for an extended period, it’s difficult to let on when something goes awry, if/when a new problem surfaces, because over time, one begins to develop a sense of shame about it; an embarrassment that you’re not only still unwell, but there may be another issue to deal with, a further delayed recovery; more treatments, another detour on that road to wellness.

It’s for that reason that I remained silent when, a few months back, a lump was found in my right breast. I harboured the fears quietly, stomach in knots for weeks as I awaited test results. (Being on the estrogen-progesterone cycle, the elevated risk of breast cancer is always top of mind.)

I wrestled with how, if need be, I’d disclose a new diagnosis; introduce this new part of my medical journey.

Thankfully, the how-to-best-address-the-situation was a decision I never had to make, as results ruled out cancer, allayed fears of a tumour. It’s not entirely clear what the lump was, but because I have so little breast tissue, it may have just been a fibroid/other benign mass that otherwise would have gone unnoticed had there been denser tissue surrounding it.

(I do have a follow-up scan booked for June, however, as a precaution.)

In addition to the solace the nothing-to-be-concerned-about-at-this-point diagnosis brought, was relief that I’d said nothing; that only my mother and I (and my GP, of course) knew what was happening.

“How embarrassing,” I thought, “to think I’d have worried people for no reason at all.” 

 I couldn’t help but feel as if, without a dramatic, dire diagnosis, I’d be seen as having made a seemingly trivial matter into something more than it was, even if that ‘more’ was what had been feared.

It’s this thought process that keeps me from updating more regularly, and why, when coming down with what was thought to be a severe respiratory/gastro virus combination (yes, I had my flu shot) I did little more than make passing mention of a fever, even as I spent the week shuttling myself between home and emerge (my mother, still in Ontario, had been away for weeks) in the early morning hours for IV hydration and electrolytes; my body struggled to combat severe dehydration, the inflamed gut unable to carry out even basic absorption duties.

Though scheduled to be away for the entire month of February, given my worsening state, I asked mom to cut her trip short, and she did, flying home Sunday, February 22.

I’d spent that Saturday-Sunday overnight period at the hospital getting ‘juiced’, and once home, alternated between sleeping and eating what little the gut would tolerate.

Because it was Oscar Sunday, though I felt like hell, I found Twitter a welcome distraction to snark along with everybody else. “It’ll do you good,” I told myself, “to keep your mind busy, even with trivial matters.”

After a bit of enjoyable banter, I made myself a snack, having somewhat of an appetite for the first time in days.

But it wasn’t long after I’d finished eating that things began to rapidly deteriorate, feeling not just unwell, but frighteningly so. I was chilled to the bone and shivered uncontrollably even as my temperature spiked to 104. I sat frozen in place, too weak to move, though I desperately wanted nothing more than to sleep. I called for my mother, who suggested we go to emerge, but I was simply too exhausted.

“In the morning,” I said. “Please, just let me sleep.”

She settled me in on the couch and herself on the adjacent chair; she’d been awake now for over 24 hours, had to work in the morning, but kept vigil, as always, without complaint.

It’s when, after a couple of hours, I tried to get up, that I knew I was in trouble. My vision blurred as I struggled to remain conscious; I couldn’t see, couldn’t hear anything. My legs buckled, body convulsed, heart beat so rapid and furiously I thought it might burst through my chest. 

And I couldn’t breathe. Each time I tried to take a deep breath I felt a familiar stabbing in my lower back, just beneath my ribs. This was a feeling I recognized from 2013. Just as I know obstruction pain, I knew this pain — this was lung-collapse pain.

I – we – didn’t think I’d make it to hospital.

Upon arrival, the crash cart was waiting. I was rushed through triage, taken back where I met with the same emerge doctor I’d seen the previous night/early that morning, and he was visibly startled by the drastic change in circumstance.

It was a race against time to secure the multiple lines needed not only for IV and drug delivery, but for injection of contrast during diagnostic scans and, if need be, anesthesia for surgery.

The veins, of course, were less than cooperative, either collapsing or blowing outright. It took about a dozen tries before two good sites were secured, during which time blood tests and cultures were examined, doctors working to determine just what was wrong.

My liver counts were all over the map, and there was indication my gallbladder was in distress. On top of that, I’d developed sepsis – the cause of that uncontrollable fever. Potent IV antibiotics were initiated as I underwent further physical examinations, spending the better part of the night under the care of a surgeon whom I recognized from my 2013-2014 hospital stays. Like my (GI) surgeon, he was happy to discuss the medical things in detail, explaining what the concerns were regarding the gallbladder and liver, the connection between short-gut syndrome and various gallbladder and liver ailments, and, depending on what the diagnostic tests did or did not show, the various options/scenarios I’d be met with.

And, it turns out, we share an interest in politics. So, though I had nearly no ability to speak – my voice had been gone for days – I managed to enjoy a good-natured back and forth, which not only helped lighten the mood, but brought a welcome sense of comfort; a feeling of normalcy. It’s those little things that have the greatest impact when events are chaotic, and as frightening a situation I was in, that surgeon went out of his way to lighten the burden.

And I am so, so grateful for him.

I was formally admitted that morning and moved to Unit 82, the ward just down the hall from my usual home on 83. The IV antibiotics ran round-the-clock as diagnostics continued: Ultrasound, X-ray, CT, and ultimately, a specific, 45-minute long MRI (MRCP). 

While the CT definitively diagnosed the pneumonia and partially-collapsed lung (I knew it!), the MRCP was to determine whether I’d developed ascending cholangitis (infection/blockage of bile ducts in the gallbladder) or sclerosing cholangitis (scarring/blockage of bile ducts in the liver), both of which, I learned, are complications of my short-bowel syndrome. And, given the sepsis and areas of pain/inflammation (not to mention the results of the blood work), it was suspected that one of those two possible diagnoses would be the source of infection, meaning some sort of surgery would be required.

Because there has been lingering concern over my liver, the constantly fluctuating, and sometimes alarmingly high, counts always raising red flags, I expected the MRCP to finally confirm what had long been feared: liver disease/sclerosis, more fallout from the years of untreated ulcerative colitis. A diagnosis which would once again throw the recovery into question; would require new doctors to be recruited to the team, further treatments, and present a once-again uncertain future.

You can imagine the delight shared between myself the and medical team assigned to me as they shared the results of the MRCP: No signs of infection or blockage in either the gallbladder or liver, and zero indication whatsoever of disease in either organ.

Not that the sepsis and pneumonia weren’t incredibly serious in themselves, but knowing that’s all this was, a temporary and very fixable bout of illness, brought me to tears.

Though unexpectedly sidelined for a few weeks, everything else is still a go, recovery remains on track.

I still had to finish the course of IV antibiotics, though, and the partial-collapse of the lung had just alleviated, so I was transferred to my ‘home base’ (Unit 83) to finish out my hospital stay, where I was met with the usual smiles, hugs, and tears from those who’ve cared for me so many times.

And though too busy to stop in, hearing my surgeon’s voice in the hall as he made his morning rounds provided so much comfort.

Just shy of one full week after being admitted, I was discharged from hospital and allowed to finish the antibiotic regimen orally. And since returning home, things have progressed incredibly well. Though I did return to emerge a few days post-discharge for hydration help, I only had to do so once before the infection finally waned enough for the inflammation in the gut to subside.

It goes without saying that the weight has suffered. Three weeks ago I was just under that 100-pound mark (99.4). Today I am 92.4. An unwelcome and frustrating setback, yes, but one that was beyond my control. What’s important is that the gut is absorbing (as best it can) once more, and my intake is nearly back to where it was before this little episode.

 It’ll be another week at least before I venture back to the gym to continue the physical recovery, as I need to regain my full lung capacity, energy reserves, and the ability to take in an adequate caloric surplus to ensure the weight moves in the right direction. But the losses have stopped, the number on the scale has remained stable for three days now, which means the gut is working and ready to move ahead.

—————

The final of three, pre-treatment appointments with my oral/dental team was set for February 25, but due to the, um, ‘detour’ detailed above, I had to reschedule. That appointment’s date is yet to be determined, but I should receive confirmation of a date by Wednesday, the appointment expected to happen sometime within the next two weeks (when all team members are available), with treatment beginning soon thereafter.

In the meantime, I’d like to touch on something I’d opted not to go into detail about, as it’s not my intention to mix the emotional with the medical, especially when it comes to asking for financial help. I am not interested in playing on emotion, do not want to garner sympathy-donations. I know Project Smile could be funded in a matter of days with excessive/viral media coverage or dramatic woe-is-me blogposts or YouTube videos, but I simply refuse to engage in that sort of, for lack of a better term, marketing.

If people are interested in, and able to, offer financial support: wonderful. But I’d rather fall well-short of my funding goal with donations given out of a genuine desire to help, than surpass that $100K mark through manipulative means.

That being said, I feel it’s important for you – those who’ve donated, advocated, or sent messages of support/encouragement – to know just how profound an effect you’ve had:

My medical journey, one which has now stretched beyond a decade, has been a lonely one. Not that I’ve been without support: I have an incredible, close-knit network of family and friends who are always, always there if/when need be, not to mention a medical team who are second-to-none.

But it has been a struggle to find my place; feel a true sense of belonging.

 The long, solitary nights, largely isolated days, tend to wear on any sense of connection. One can’t help but feel largely alone, generally insignificant; existing without purpose, contributing nothing of merit.

This is one area I choose to endure quietly, some days/nights are less heavy than others, but in the weeks before I launched Project Smile, I’d all but abandoned any sense of worth. My heart was heavy, confidence non-existent, and I felt completely lost; at sea without a compass, drifting from one day to the next.

This wasn’t depression, but simply a sense of loss of direction; loss of belief in the post-recovery future.

And then, you changed everything.

I launched Project Smile with little hope, and even fewer expectations. I thought, perhaps, I’d receive support from friends and family back home, and maybe even donations from my lovely little network here in Calgary.

I could never have imagined the outpouring of support that followed: the incredible generosity and advocacy from people I’ve long admired, people whom I so feared would think less of me for asking for help.

The donations, messages, and e-mails I’ve received from names I’d never expect to see attached to such generosity, kind words, friendship, and love — my heart was lifted out of the darkness.

“I don’t think you know how many are behind you,” was a common theme among the messages.

I didn’t know.

Honestly,  I had no idea.

I did not know.

But knowing I belong, that I’m valued, by some of those I respect the most – that means everything.

Everything.

Though the events surrounding, and the ultimate falling-though of, the dental/oral treatment’s funding, the agonizing decision to go public and launch the GoFundMe, allowing myself to be seen still-unwell, has taken quite a toll emotionally, the support I’ve received, the generosity that continues to pour in, has emerged as the unexpected light at this tunnel’s end.

Even if, after this post, no further contributions are made to Project Smile, what my heart has gained – what you’ve given me – is something no amount of funding could ever secure.

You’ve helped in ways far beyond words’ ability to describe.

Thank you, thank you, thank you.

You changed everything.

xo

www.gofundme.com/apsmile

Operation Smile

There are aspects of my medical story, my life, that I’ve touched on only briefly; things mentioned or referenced without a great amount of detail, not because I’m unwilling to discuss, but because further elaboration would require, and warrant, a stand-alone exploration.

This has allowed for a careful, meticulous chronicling of the latter portion of my medical journey, providing the opportunity to introduce and expand on the non-intestinal aspects only if/when necessary. And, as was the case when endocrinology intersected with the gut, if it weren’t for this devastating blindside, the dental/oral aspect would have remained but a footnote.

Had the planned means of financing this crucial, final treatment not collapsed, the cost to me would never have been discussed, nor would I have reached out for help. It would have been a burden, yes, but a manageable one, as it would allow for a thorough, completed treatment, ensuring a definite, unqualified recovery.

Further, if not for Project Smile, I would not be appearing publicly before the recovery is complete; would not allow myself to be seen before all weight was regained, hair regrown; not until the still-healing-gut triggered bouts of eczema over my face and body were longer a recurring nuisance.

I’d planned to keep my appearances limited, movements restricted to appointments, the gym, and the dog park, until I was again as healthy on the outside as I finally am on the inside.

This approach, however, is no longer an option, and as difficult as it is, I know for Project Smile to succeed, I must put myself out there before I’m ready – before I’m healthy – and trust people will forgive my current, temporary (and rather unattractive) appearance; will understand I can look unwell without being unwell, and will continue to see me as I am, as I’ll be once again, instead of forever pegging me at this current stage of recovery.

I’ve been through this before, as the images I’m about to share will illustrate. I will rebuild again, will fully recover, but it’s a very slow process. And though I hadn’t planned to make these images public (though a few I’ve shared before), I feel it’s important to do so, if only to allow for a greater understanding of what I’ve been through, what I’ve overcome, and help serve as a point of reference through the rest of the rebuild/recovery.

 

My medical  journey – A visual timeline: (descriptions appear quite small, but are found at the bottom of each photo)

2000

Year: 2000

2001

Year: 2001

2001

Year: 2001

2002

Year: 2002

2002

Year: 2002 – a friend and I at a fancy event.

2003/2004 (illness clearly ravaging the body, final gymnastic appearance)

Year: 2003/2004 – Intestinal illness onset and, being untreated, clearly ravaging the body. I believe this was my final  final gymnastic appearance.

2004/2005 - 58 pounds - state of emaciation after being refused medical help in Ontario.

Year: 2004/2005 – 58 pounds, state of emaciation as the stigma of a past eating disorder (suffered when I was a  child, even before my gymnastic years) led to a refusal of medical help, the assumption I had merely relapsed, scoffing at the idea of anything medically wrong. This is how many back in Ontario saw me last, and they rightly thought it would be the last they saw of me.

AFter move to Calgary (2005) and proper medical diagnosis, beginning of treatments (first 2 of 5 intestinal surgeries in 2005 + 2006, GI rehabilitation to restore function of the small intestine and subsequent rebuilding/recovery), my sisters and I reunite in 2010 after 5 years apart. The last state they saw me in  is seen in the previous picture.

Year: 2010 – After the move to Calgary (2005) and proper medical diagnosis, beginning of treatments (first 2 of 5 intestinal surgeries in ’05/06 and ’06/07), after the successful GI rehabilitation to restore function of the small intestine and subsequent rebuilding/recovery, my sisters and I reunite  after 5 years apart. They thought the next they’d see of me would be in a casket.

2010

Year: 2010 – Same reunion, a wonderful day.

2011, first real foray out after regaining intestinal function, regaining all the weight lost and regaining health/fitness. At the Underwear Affair, ran the 10k and won Best Superhero for my Captain Awes(t)ome(y) -- revealing my ileostomy.

Year: 2011 – My first real foray out after regaining intestinal function and all weight + fitness I’d lost. The Underwear Affair (raising funds for cancers below the waist), I ran the 10k and won Best Superhero for my Captain Awes(t)ome(y) costume. Here I’m revealing my ileostomy, and telling my backstory/reason for running (father and maternal aunt both died of colon cancer)

2012

Year: 2012. Brio and I. *This* is me.

February 2013 snowshoeing at Troll Falls, this picture taken just months before the first fateful surgery in May.

Year: February 2013, snowshoeing at Troll Falls. This picture was taken just months before that fateful surgery in May, which would set off the series of unfortunate events leading to where I am today. Weight: 130 solid pounds. Fitness: back to elite-level training. Life: awesome.

May 2013, after the first surgery, dealing with some seemingly minor post-op struggles.. Discharged (and readmitted that same day) shortly after this picture.

Date: May 2013, after what was to be the single, final surgery (total proctocolectomy, small bowel resection, stoma revision), dealing with some seemingly minor post-op struggles. I was discharged (and readmitted that same day) shortly after this picture was taken.

May 2013 surgery (this main incision would be cut through 3 times in total)

Date: May 2013 – this is what the intestinal surgeries look like. (This main incision would be cut through 3 times in total)

June 2013 - after having been readmitted with an assumed ileus (normal post-op complication) exploratory scope perforated bowel (because it wasn't an ileus - it was a twisted off and now dead piece of small intestine), waiting for emergency surgery. Body swollen with edema as organs begin to shut down.

Date: June 2013 – After having been readmitted with an assumed ileus (normal post-op complication), an exploratory scope perforated the bowel (because it wasn’t an ileus – it was a twisted and now dead piece of small intestine); Waiting for emergency surgery, face/body swollen with edema as the organs begin to shut down.

June 2013, post emergency surgery (small bowel resection and removal of the ischemic bowel) fill of edema, on TPN (IV feed directly into my heart), all lines maxed out, recieving one of three blood transfusions.

Date: June 2013 – post emergency surgery (small bowel resection and removal of the ischemic/dead bowel), full of fluid/edema; on TPN (IV feed directly into my heart), PCA (morphine) pump; IV lines maxed out; receiving one of three blood transfusions.

Date: June 2013, same as above.

Date: June 2013, same as above.

June/July 2013 - rebound begins, organs start to function, body purges the excess fluid (daily weight loss in Kilos tracked)

Date: June/July 2013 – The rebound begins, organs start to function, body purges the excess fluid/edema, as the daily weight loss (in kilos) shows.

Jan 2014 - after long summer of  working hard on recovery post discharge in July 2013, physical gains beginning to show. Shortly after this picture my intestine would prolapse again, leading to the third (and final) surgery in late February 2014, more small bowel removed, new ostomy created and anchored, but all gains made in weight and fitness lost once again.

Date: Jan 2014 – After 6 months of working hard on recovery post discharge in July 2013, physical gains beginning to show. Shortly after this picture was taken, my intestine would prolapse again, leading to the third (and final) surgery in late-February 2014, where more small bowel would be removed. All the gains I had made would be lost once again — and more.

May 2014 - massive post-operative Post-op obstruction. Situation was critical, as the blood pressure shows.

Date: May 2014 – In hospital for a massive post-operative obstruction. The situation was critical, as the blood pressure shows.

May 2014 - After all was said and done,  my lowest point of 85 pounds as the intestine struggled to recover from so much trauma in such a short span.

Date: May 2014 – After all was said and done, after 3 intestinal surgeries in under a year plus the final, massive obstruction, my weight finally hit bottom – 85 pounds – as the intestine struggled to recover from so much trauma in such a short span.

May/June 2014 - 85 pounds, the starting point of the rebuild.

Date: May/June 2014 – At 85 pounds, my starting point of the rebuild.

October 2014 - 95 pounds and getting stronger by the day.

Date: October 2014 – Picture taken by a dear friend for her 90-days-of-fitness project; Weight at at 95 pounds, muscle and strength gaining by the day.

 

I’m not going to upload a current selfie; I can’t bring myself to take one (I even refused to Skype with my family this Christmas). To see me as I am today, where I’m at as the recovery continues – weight just shy of 100 pounds now, still another 20-30 to gain – watch for the interviews. I’ll update this post and link to my appearances as soon as they’re made available.

I’ll write more later, as I have so much to say about Project Smile and the overwhelming response, but at this moment, I’m spent.

Direct link to my donation page, for those who are interested in/able to contribute: http://www.gofundme.com/apsmile

Update: The only thing worse than this stage of recovery is being seen in this stage of recovery. Unfortunately, the CBC report was rather inaccurate/inadequate, and there is a lack of clarity regarding the causes of, and treatments required for, this situation, due to the complicated medical history and overlapping medical issues discussed throughout the interview, so I’ve updated the Project Smile page with a more-comprehensive/thorough overview.

Thirty

The line separating routine from monotony is a fine one; it’s often difficult, if not impossible, to determine when one has crossed from one state of being to the next.

But distinguishing between the two, in terms of experience, is hardly a challenge.

Routine, though at times monotonous, carries with it a sense of purpose. There is an end toward which one works: a goal to be reached, a task completed, a project furthered.

Even if met with failure at day’s end, experience is gained. Lessons learned.

Monotony, on the other hand, is the worst kind of tedium. It’s an empty, pointless, going-though of motions. There are no points of reference; no beginning or end. Nothing is achieved because there is nothing to be achieved.

Even if all else is equal – a single point on a map marking both beginning and end – routine takes you out on the trails, into the mountains, and through the countryside before you return to the start.

Monotony is a hamster-wheel, where perpetual motion fills the void, but there’s no substance. It’s a shared beginning-end point devoid of experience through the in-between; nothing is lived, nothing learned.

Monumental effort is required to successfully straddle the two – routine and monotony – and it’s an even greater challenge to maintain balance once you’ve steadied the tightrope.

It’s a line which can be traversed so long as outward conditions remain calm. But when the wind begins to blow and that rope begins to sway, you’re caught — forced to crouch down, keep still, until the conditions pass.

You’re naked to the elements, left with no option but to ride out the storm.

So you wait, and you wait.

And you wait.

But the storm doesn’t pass.

You’re no longer working to balance between routine and monotony — you’re desperately fighting a plunge into the abyss of despair.

After having marked the first anniversary of the initial, planned surgery in May, I tipped my hat to the one-year date of the second, emergency surgery in June.

Things had finally begun to rebound from the massive obstruction which hit in April following February’s third, and final, intestinal surgery, and there seemed to be just enough predictability to allow for a steady routine: a clear, daily regimen to guide my recovery through the summer months and into autumn’s planned medical assessment/adjustments.

As I settled into the rhythm, the physical progress marched right along. The predictability, as always, proved a double-edged sword: It removed the guess work from the equation, allowing me peace of mind that I’d done what was asked of me, what was required to keep the recovery moving forward.

With familiarity, however, eventually comes boredom, and soon the advantage of thwarting the end-of-day anxiety was lost to a new, and growing, steady-state of unrest.

With each day came fresh agitation, increased irritation, diminished ambition, absence of purpose.

Routine was supplanted by monotony, and old foes were only too-eager to fill the void.

The world was no longer in clear view, but walled-off by a weathered sheet of glass. And rather than focusing on the world beyond the pane, I became fixated on the inner side of the glass, focus drifting from one imperfection to the next – from streak to spot, spot to streak – brain unable to shift from looking at to looking through.

This is OCD.

It’s what OCD, at least in my experience, feels like, and when those thought patterns began I immediately recognized its resurgence; the introspection-to-the-extreme a symptom/sensation impossible to miss.

OCD isn’t all repetitive behaviors, irrational phobias, number fixations, etc., though those are common symptoms/presentations. OCD is a brain that cannot shift gears; one stuck in neutral as the gas is floored, engine is revved to the max.

The reason I insisted on having clear guidelines in all aspects of the recovery was to prevent the creep of OCD; to ward off the merciless cycle of over-analysis and subsequent agonizing and second-guessing; to not allow for a state of paralyzing indecision to develop.

But when the brain is stuck in OCD thought processes, even a black-and-white plan provides little comfort. The mind races with alternate scenarios, taunting with various “could have”, “should have,” and “would have” scenarios.

During training, for instance, after completing the row: “Well, you could have worked harder — you’re not exhausted. You’re clearly stronger and able to step it up. Yes, you need to keep the daily distance in check to make sure you’re not burning through too many calories, but if you’re physically able to do more, then you should. You’d be pumping out so many more miles if you weren’t adhering to the plan, after all. So maybe you should stray. Maybe you’re holding yourself back. Maybe you’re making excuses. You’re delaying the recovery.”

Or, after a meal: “You could have eaten more at this sitting. If you weren’t following the plan, maybe you would have, and your weight would be better. You’re hindering the recovery.”

Alternately: “You should have stopped 10 bites ago. The gut is clearly uncomfortable — normal people wouldn’t have polished of every last morsel. I’ll bet you’re going to wake up tomorrow with an obstruction. You’ll need more surgery, will lose more intestine. All because you made yourself stick to the plan. You’ve ruined everything.”

As my doctors repeatedly note, therapy, in the traditional sense, has nothing more to offer, and has, in fact, acted as more of a hinderance.

I have a firm grasp on my mental/emotional struggles, as I have for years, and I have the ability to fully recognize and differentiate between, say, OCD thoughts and rational thinking; between a normal low period and a return of depression; between regular stress and anxiety/panic.

I know my triggers, and work hard to avoid them. Though at times anything can, for absolutely no reason, trigger panic, I’ve mastered ways to intervene at the onset,  redirect the thoughts, and somewhat soften the blow.

Reciting song lyrics aloud, and concentrating on the sound of my voice speaking/singing them, for instance, can sometimes shift attention just enough to ward off a prolonged episode of panic.

So, while not acting on the OCD-driven “could’s” and “should’s”, the brain was undeniably stuck.

I refocused, I analyzed, I made the conscious choice to ignore the compulsions — I stuck to the plan.

But the incessant noise in my mind was wearing me down.

Enter the dark: Depression.

The inability to concentrate; being overwhelmed by simple, daily tasks, or, often, just by the mere thought of them. Productivity is non-existent, as is the ability to get anything accomplished. An already shaky self-esteem completely disappears, as does all meaning.

When not consumed by the steady-state anxiety, when not working to suppress an inexplicable rage or trying to ward-off panic, there was a heavy, empty nothingness.

I wasn’t suicidal, but the mere state of being alive was no longer worth the unrelenting anguish.

I didn’t want to die, but hell — I did not want to be alive.

I met with my GP, the man who oversees my entire team, and we chatted about what was happening. I explained to him that, save for the now daily, sometimes multiple, panic attacks about death, dying, and the absolute fear that, for whatever reason, I’m at imminent risk of death just as I was last summer, I was in control of my actions.

But the brain would not stop; the alarm bells constantly rung. The shower panic-attacks returned, as did the nightmares replaying the worst days in hospital, which were now moving beyond what was experienced, ending in new, even more-disastrous outcomes.

I wondered if, perhaps, a medication change would help.

I’d been on a fair dose of SSRIs from the onset of my emotional struggles at age 11, and continued with them ever since. After years of being mentally/emotionally healthy, though, I had wondered if the SSRI continuation was necessary. But there was never any catalyst, no reason to begin weaning off.

I felt good, normal. So why fix what wasn’t broken?

For surgery, however, to minimize potential interactions, and to make it easier to rule out causes should something go wrong, all medications must be stopped. So, after far too many months in hospital last year, I’d unintentionally gone cold-turkey; the complete SSRI cessation a necessary, but unexpected, occurrence.

Given the terrible physical state I was in at discharge, in addition to dealing with all-too-fresh trauma, it would be impossible to gage whether I did, indeed, still benefit from medication.

Only time would tell, as the physical health and overall state of nutrition improved, as the acuteness of the trauma waned, if I’d return to the emotional/mental state of health I enjoyed up to the first surgery.

I suspected that what was happening now – the nightmares, chronic anxiety, anger, panic, despite all else going well – was a clear indication that, yes, my brain is one which functions best with medication.

I’d already restarted SSRIs, but at the very base dose – 1/5 of what I took prior to surgery, increasing to 2/5 soon after – so it was a simple matter of again adjusting the dosage. In doing so, however, I couldn’t help but feel I’d failed.

If only I’d fought the thoughts harder. Maybe I’d allowed the OCD, depression, anxiety/panic to creep in. Maybe I should just keep pressing on, keep riding the storm out, and things will right themselves.

Thoughts to which my doctor replied: “If you were diabetic, would you insist on going without insulin because simply ‘trying harder’ would somehow force the pancreas to function? These medications exist for a reason. It’s OK to allow them to play a role in your life-long emotional management and mental wellness. If they allow you to be you, why would you feel the need to go without?”

Why indeed.

Aside from the medication change, we decided to address the not-responsive-to-therapy strategy which allowed me to conquer the eating disorder nearly 20 years ago.

It wasn’t through therapy, nor the work of psychologists, that provided me with the tools needed to fully recover. It was my dietician – an incredible woman to whom I remain close – who facilitated the recovery. Only she could provide the peace of mind needed when irrational thoughts arose. She taught me about nutrition, providing detailed insight into the various body systems and how they functioned.

Remember: I was just a child. I hadn’t a clue about how the body worked. I had only fear.

When I completed the in-patient program where she was available around-the-clock for support, she remained a quick phone call away, direct to her personal number.

I trusted her the same way I trust my current medical team. And, as was the case with my dietician, it’s only my medical team who can provide the reassurance, information, and black-and-white answers needed to work through the post-traumatic stress, the anxiety and panic.

Only they possess the answers to the specific concerns regarding my recovery. And it’s only through their personal guidance and reassurance that I’m afforded any sense of relief.

So, a sort of informal “just to chat” appointment was proposed, to occur on an as-needed basis — be it weekly, monthly, or even daily if necessary. An hour to simply talk, review how things are going, ask questions, and address concerns; to chart progress, make adjustments.

To provide absolute, authoritative answers — the only antidote to the panic; only way to mitigate the anxiety, temper the fear.

As the summer wore on, this two-pronged approach proved incredibly effective.

Upping my SSRIs to 4/5 of my longtime, normal dose was a wise decision. Almost immediately I felt the difference: that edge was taken off. As the weeks passed, the permanent state of agitation began to ease, the irritation faded, tension waned, and episodes of panic decreased significantly.

The thousand-pound vest of turmoil I was suffocating under had finally been removed.

I could breathe.

The mind became quiet once more — the noise had stopped. When I say ‘noise’ I don’t mean literal noise – real or hallucinated – or anything audible at all. It’s difficult to explain, but imagine being in a room filled with televisions and radios, all pouring out static at full volume.

That’s what it feels like, the ‘noisy’ brain; a mind that refuses to be ‘quieted.’

It feels like static sounds.

And now imagine, after being stuck in that room for months, the static suddenly stops.

The TVs go dark, radios mute.

Silence. Glorious silence.

That’s the ‘quiet’ mind.

My focus began to shift, too: first, from the inner-side of that pane to the world beyond, and in recent weeks, the glass barrier has been altogether removed. I’m seeing, living, things once again as they are.

The brain is no longer stuck in neutral; mind no longer in state of paralysis.

The ‘just-to-chat’ appointments, indeed proved far more successful than any standard therapy in working through the trauma, alleviating the anxiety, and controlling the panic.

Over the course of a few months, I’ve made more gains in the emotional recovery than I had throughout the previous year-plus.

Though I’m not 100% just yet, I feel the closest to ‘normal’ — that pre-surgery state of mental/emotional well-being — than I have since, well, since before being admitted for surgery.

And I now have full confidence that I can – I will, in fact – fully regain my normal state of being.

As things began to turn for the better on the mental/emotional side, however, a new, potentially devastating medical situation arose.

It started off small, a light swelling under my chin and down into my neck, which I initially brushed off as swelling from a dental abscess for which I’d just been prescribed antibiotics.

But as the course of antibiotics ended and the dental pain subsided, the swelling only increased, eventually growing into a sizable lump — an obvious cause for concern.

Given the number of times I’ve been exposed to radiation – X-rays, MRIs, CTs, etc: Nearly 40 instances in the past year alone – there is an ever-increased risk of cancer.

I won’t drag this out: A series of diagnostic tests confirmed that the lump was NOT a tumor, nor was it cancerous. It was a massive, benign cyst, caused by an underlying issue; further fallout from the intestinal fiasco, but an area which hadn’t been addressed.

Something I’d yet to write about here, opting to do so only if/when necessary. Clearly that time has come, as the issue cannot be put aside any longer and the fix is set to begin shortly.

In sum: When my small gut was not functioning (before the intestinal rehab) I required some standard dental work. Due to my extreme state of malnourishment, however, what should have been run-of-the-mill became an ordeal, complete with recurring infection, disappearing enamel, and ultimately, compromised bone. Unlike the other consequences of a body’s starvation – hair loss, for instance: hair grows back when nutritional status normalizes – teeth don’t recover.

Dental issues will not right themselves.

To make matters worse, the dentist tapped to deal with the ever-deteriorating bone over-sold his ability to adequately and fully perform what was required, and after his questionable work, things were left worse than where they started.

After my medical team became involved, I was put in contact with the specialists qualified to deal with the matter. I’d planned to have an oral surgery consult shortly after the first surgery in May, but, well, things didn’t exactly go as planned, as you know.

The fight-for-life that ensued only invited further infection; extreme weight-loss/lack of nutrition caused further bone deterioration.

Even if I wanted to jump into the oral surgery immediately following discharge, I couldn’t, as the healing ability wasn’t there.

I’d only be asking for trouble.

With the recovery now in full swing, the gut function improving daily, state of nutrition normalizing and weight slowly, but steadily, climbing, my ability to heal from the now fairly major oral surgeries required isn’t a concern.

The cyst was caused by this oral/dental situation, a sign that treatment cannot be put off any longer.

Over the course of about 6-8 months, depending on how well healing occurs, I’ll have a series of bone and tissue grafts, and single-tooth implants where any teeth are compromised. It’s not going to be a pleasant experience, but it will prevent any future bone/palate deterioration and ensure my smile – one of the few things I like about myself – is something I can count on liking well into the future.

Which makes me very, very happy.

This oral issue has been one of two loose-ends to be tied medically, and knowing it will be properly, permanently fixed – finally – is such a relief. The discomfort of the procedures will be well-worth it in the end, and really — there’s no better time than now, while I’m already limited to a pureed intake, already restricted in my movements, to get it done.

The second, and final, yet-to-be-fully-addressed medical situation deals with endocrinology.

As detailed in my last update, the difficult, but wise, decision to halt any further HRT was made. However, just what the long-term strategy entailed was left unanswered.

Of all my medical team, my endocrinologist was always the weakest link. She was smart and capable, but at times seemed uninterested; lacked the leave-no-stone-unturned dedication exhibited by the others; didn’t offer any curiosity to probe beyond what was necessary for an easy answer.

After the HRT decision, my GP tapped a new endocrinologist to the team who’d review my case, overhaul the treatment plan, and oversee any/all endocrine matters from here-on-in.

Going into the first appointment, I wasn’t sure what to expect. So many questions remained after my final meeting with my now-former endocrinologist, and though I trusted my GP to recruit only the best for me, I couldn’t help but worry that, perhaps, I’d leave regretting the endocrine overhaul.

The rest of my medical team – my gastroenterologist, surgeon, GP – are all second-to-none. I’d long wished for an endocrinologist who’d match the others in brilliance, but with the endocrine issues relegated to the sidelines until the intestinal matters were fully taken care of, I opted not to press the issue.

But now, with that decision having been made for me, I dreaded the notion: “Be careful what you wish for.”

We met for nearly three solid hours, my new endocrinologist and I, pouring over my medical history, dissecting each diagnosis, reviewing every test/result.

It quickly became clear that this was indeed the man who’d fully round-out, finally complete, my medical team of excellence.

He explained to me, both in medical terms and non, my various diagnoses, their underlying cause, and the treatment/management options.

And finally – finally – a long-term strategy was presented.

With the thyroid (hypothyroidism) it’s a simple matter of regular blood monitoring and adjusting the dosage as required.

The hyper-pigmentation which developed over the past two years around my cheeks and eyes may or may not resolve as the the hormones are regulated/normalized, so it’s a wait-and-see approach.

The amenorrhea is primary: genetic/familial. Even if I were to continue with the HRT, it would be for naught. My uterus will not function, body will not ever achieve a typical feminine silhouette.

And you know what? Now that I’ve had it explained to me, fully understand the definitive diagnosis, I’m OK with that. What’s important to me, physically, is strength, fitness, and athleticism. It has always defined me, and there are zero limitations – genetically or otherwise – to what I can achieve.

So what, then, is the long-term treatment/management strategy?

Estrogen is important for many reasons, not the least of which is bone (and dental) health. And because my body cannot produce even the minimum required for non-reproductive functions, I will require a low-dose replacement for life.

**Detailed female medical details below, skip if desired**

But there’s no need to force a bleed just for the sake of it, so after purging the uterus of any accumulated lining, a daily base-dose of progesterone will be added to prevent any future build-up (and subsequent forced periods) while allowing for the ongoing estrogen delivery.

**If skipped, safe to resume reading.**

And just like that, the final piece of the puzzle fell into place.

The appointment concluded, I made my way to the car, sat in the parking lot, and cried. Tears of relief poured out, and with them drained all the doubts about the future, making room for a long-sought sense of closure.

No more loose ends; nothing else yet-to-be-addressed.

Finally, everything, every aspect, is being followed and taken care of.

My endocrinologist and I meet again mid-October, at which time I’ll either begin the forever course of treatment, or do another, more aggressive round of preparatory treatment (chemical D&C), delaying the official treatment’s commencement by just a few weeks.

Though everything discussed, all the developments detailed above, have been quite recent, the past two weeks in particular have been incredibly positive, and on October 2  I marked my 30th birthday with a sharpened focus, return of purpose, renewed confidence, and strengthened resolve.

I can do this. I will do this.

Yes, I still have a fair chunk of road to cover before the recovery is complete, but a definite shift has occurred. I’ve broken through the wall, found my second wind, and am once again pressing toward the finish at a steady pace.

Rather than idling to fight the elements, I’m taking them as they come without loss of momentum.

Not only will I complete this marathon, but I’ll finish strong, undaunted by the series of detours and hurdles thrust upon me as I navigate the course.

To all who’ve stood along the barriers to cheer me on, who’ve waited patiently at various distance markers, paying no mind to the time it took me to arrive, to offer words of encouragement, or sometimes, just to stand silently, offering a knowing nod of solidarity and unending support: I cannot thank-you enough.

It’s through those brief, seemingly unremarkable interactions that I gather the will to continue down the long, solitary portions of road.

As I continue down this final stretch, the marathon’s conclusion inching closer by the day, I take comfort in knowing know you’ll be there to greet me at the end, ready to celebrate the conclusion of this long, arduous journey, and step with me into the fresh, post-recovery chapter of life.

What a celebration it will be.

See you at the finish.

xo.

One Year Later, Back To The Start

When I began writing here one year ago, May 13, 2013, kicking off what was to be the beginning of the end of treatment – the ‘final’ surgery which, as those who’ve followed my journey are aware, would instead become the first of three major intestinal surgeries in under a year – I had hoped that today, May 13, 2014, I’d pen an anniversary post detailing a return to athletic competition, of enjoying fulfilling employment, or perhaps having resumed the education I had to forgo back when this all started.

Writing about a life without constraints, without limits. Marking the end, or the imminent completion of, the planned recovery.

I began this final leg of treatment not just hoping for the best, but expecting it. There was no ‘preparing for the worst,’ because the worst had already past. Against all odds I’d already survived, successfully endured, the most life-threatening consequence of the illness.

Right?

Man, what a year it’s been. A year of recovery, and of setbacks; of progress and regression; of fighting to rebuild only to be torn down, repeatedly. It’s been twelve months of long, sleepless nights questioning my future, my worth, and often, the value/wisdom of continuing to persevere.

There are things I’ll get into further down in this post, medical aspects I haven’t discussed simply because I lacked the courage to do so before now, but given that this area has intersected with the intestinal side of things – the status of the gut directly affects what can/cannot be done – I suppose there’s no better time to open up and discuss it too, if only to provide insight into the total fallout of the intestinal disease.

First thing’s first, though: The incredible rebound following the third (and *actual* final) surgery, and being absolutely blindsided on Easter weekend with a fairly significant setback.

As detailed in an update (posted for family and friends on Facebook) following the first follow-up with the surgeon, the post-op recovery was going phenomenally well. Everything was progressing smoothly, I felt the best I had both physically and emotionally in a long, long time, and save for having to make a few return trips to the ER for a balancing of electrolytes and fluid top-ups, and the predictable weight loss, things looked promising.

In fact, as I noted one night on twitter, things were going “frighteningly well.”

Though the physical progress I’d made since the May/June ’13 debacle had suffered greatly, when I again returned to the gym, I felt confident; strong, even. Yes I was thinner than I was after my return following the first two surgeries, but I was in much better health. My organs weren’t failing, or in the recovery-from-failure process, and I felt absolutely nothing in my gut/abdomen — and that felt wonderful.

It felt normal.

But on April 18, Good Friday, that blissful nothingness disappeared, replaced by an intense, familiar pain that crept its way up my back, around my ribs, and deep into my core.

I knew this pain. This was obstruction pain. But how could it be? Everything I’d taken in was either liquid (supplement) or cooked and pureed down to baby food texture. Even eggs went through the Magic Bullet. I had taken no chances.

So what was happening?

As it turns out, obstructions can be caused not only by what happens inside the gut, but what occurs surrounding it, too.

The first few months post-op are always higher-risk, as scar tissue is moving around, forming in some areas, breaking apart in others, and the gut does not like to be touched. All it takes is for some incidental, seemingly innocuous contact by adhesions to trigger a total intestinal shutdown, which is precisely what happened.

Getting to that diagnosis, however, was an excruciating process. Despite a near-constant stream of narcotics – morphine, fentanyl, demerol, hydromorph – nothing would kill, or even dull, the pain. Hour after agonizing hour passed as the Emergency team assigned to me waited on various diagnostic results. It was hoped that a definitive diagnosis could be gleaned from a simple set of abdominal X-Rays, sparing my body the radiation of yet another CT or MRI, but when the images failed to produce a clear enough picture, an MRI was ordered. One positive on the night was the blood work, which, as the nurse remarked, appeared “frustratingly unremarkable.” And though the blood failed to provide insight into what was happening, it confirmed that my kidneys had, in fact, fully recovered from the renal failure experienced in May/June.

Which meant they could go ahead with the MRI, complete with both oral and IV contrast, allowing for a crystal-clear look at not only what was happening, but the precise cause.

After the adhesion-initiated obstruction was confirmed, I had the NG – the tube that would drain the contents of my stomach and intestine until the obstruction resolved – successfully inserted … after FIVE attempts.

Five.

Now, I understand that, being a long weekend, and given that it was now the wee hours of the morning, perhaps the more-experienced nurses weren’t working. But what I experienced that night was completely unacceptable: A fresh-out-of-school nurse with more confidence than skill screaming at me for her failure to place the NG.

Blood poured down my face as I worked to quell my rage, every failed insertion sending a fresh cascade of plasma out my nose and down my throat. Finally I’d had enough and told her in a not-so-polite manner that I was done.

I’d had it.

She stormed off in a huff, petulantly tossing aside the supplies, mumbling something about me “just sit(ting) there in pain, then.”

Apparently she advised the surgical resident that I’d refused the NG, which he quickly learned was not the case after I begged him to insert the tube, as the nurse appeared to have no idea what she was doing. She even refused to provide water to drink/sip during insertion, which is HOW THE TUBE IS INSERTED.

By swallowing.

“Just dry-swallow, or pretend to swallow,” she’d instructed.

The resident was quite apologetic and agreed to place the NG, which he did successfully in a single pass. Despite having the NG properly inserted (X-Ray confirmed and all), the gut was having none of it. Rather than settling down, allowing the suction to relieve the pressure, the contents of my intestine were bubbling up into my stomach, which had me violently throwing up intestinal content for the next 6 hours.

It was horrific.

When the on-call surgeon arrived mid-morning, upon seeing me covered in a mixture of fresh and dried blood and vomit, he was livid.

“What the hell is going on here?” He bellowed. “Why are you torturing this girl?”

When an NG is properly placed, there should be no vomiting. Yet the entire night, that’s what happened. And no one did a damn thing.

Mercifully, it wasn’t long after the surgeon’s lecture to the overnight nursing staff that I was finally moved to a bed on Unit 83, where I was greeted with warm smiles by familiar faces, including the nurse who saw me through some of the scariest nights all those months ago.

Finally, the recovery could begin.

It wasn’t initially clear whether surgery would again be required, or if things would work themselves out with a gut rest, but after 48 hours there were clear signs of progress, and suddenly, the gut began pouring out fluid, desperately trying to purge the obstruction. Though the ongoing, drastic fluid loss resulted in an alarming drop in blood pressure, progress, for the most part, was pressing ahead, and just shy of one week after the obstruction hit, enough progress had been made to allow for discharge.

Initially the fluid loss continued at too high a rate for me to keep up, so, as was the case after the third surgery, I returned to the ER for some electrolytes and fluids — a total of 6L the first week alone.

Slowly, as the intestinal swelling subsided, the fluid uptake returned to normal. Each day saw me taking in (and absorbing) more food/nutrition, and after hitting a post-obstruction low of 85 pounds, the weight began to rebound.

Today, just under one month since the obstruction, I’m sitting at 89 pounds.

One year ago, heading into the first surgery, I was a strong, solid 130 pounds, carrying 8-10% body fat. I was lean, chiseled, and athletically unstoppable.

After cheating death, fighting my way back from the brink — 3 surgeries, 2 partial obstructions, and one total obstruction/full intestinal shutdown, I’m back to square one in the rebuilding and the recovery.

Which, in the grand scheme of things, is a far better fate than where I could’ve been (or not been) at this point.

With patience and perseverance, I’ll rebuild as I’ve done before, and though it’ll be a slower process than I’d like, the body can only rebound so fast. It cannot be forced. But I will return to peak athletic form, of that I have little doubt. And because I’m again starting from scratch, I’m going to document the journey, not only for myself, but, in the end, to share here with you; with everyone who has accompanied me along this journey.

Not many people get to see what it’s like to rebuild a body after catastrophe hits, and because I’ve done this before with great success, only to think back on it later, wishing I’d in some way recorded the process, I figure now’s the opportunity to do just that.

Plus, it gives me an extra sense of purpose in the rebuild, knowing others are along for the ride.

All told, the physical and intestinal recovery from here on in will be a full 2 years.

It’ll be a minimum of 12 months to learn to work with the now drastically shortened gut, finding ways to deliver the most calories/nutrients in the most efficient means possible. It’s very much a trial-and-error process, but once a workable dietary routine/regimen is established, it’ll be relatively smooth sailing, gut-wise.

For the first 12 months the physical recovery will very much be dictated by the gut. The body can only rebuild if it’s able to properly absorb the nutrients provided. Training will depend entirely on intake/absorption, and so long as the weight continues to creep upwards, so too can physical exertion. By the end of the first year I will have settled into enough of a routine, and the gut will have normalized enough, that I can begin ramping up the intensity and demands physically, and by the end of year two I’ll be back to elite-level fitness, a healthy, stable weight, and peak physical condition.

Or, so goes the plan.

Surely there will be some unforeseen detours along the way, but the strategy that’s been laid out gives me great confidence in my ability to see this recovery through.

—-

Though I’ve been open about the emotional fallout resulting from all I’ve been through, I’ve restrained from discussing what’s arguably the most personal issue I’ve faced to date, one which has always been part of the overall treatment process, but until now was able to be kept separate from the intestinal aspect.

I will try to be as concise and to-the-point as I can, as I can always expand/elaborate in future posts. But for now, an introduction to the issue:

As an elite female athlete, it’s quite common to lack a period. The combination of physical training demands and low body fat levels simply do not allow the body to prime for pregnancy, so menstruation either ceases or is delayed. It’s par for the course for many female athletes, so it’s not necessarily something to be concerned about.

In my case, however, it was much more complicated.

As people back home are well aware, I’ve always had an incredibly lean, athletic body, and I worked damn hard to attain it. Naturally, with low levels of body fat and extreme energy expenditure, there wasn’t exactly anything to spare for a typically developing female body.

The result?

A rather androgynous figure. Which, truth be told, I was entirely comfortable with. Even through high school, I was wholly unconcerned by my lack of femininity, as I valued my athleticism, took pride in my musculature, far more than I coveted a figure.

Deep down, however, I was terribly self-conscious about it. But, I reasoned at the time, it’s part of being a female athlete. It’s not going to be forever, and really – what mattered to me then? Fitness. Strength. Performance. I wasn’t focused on relationships, had no immediate plans for children. So just keep on keeping on, I thought.

The rest will work itself out in time.

The first indication that something was amiss came after the very first intestinal surgery (back in ’06 — I’ve now had a total of 5 major gut operations), when my surgeon noticed abnormal atrophy of the ovaries.

Because I was so critically ill at the time from the intestinal illness, it was assumed I lacked a period because nothing was functioning. But, as my surgeon noted, this was different. There was clearly something happening – or not happening – in reproductive system.

I do have a family history of amenorrhea: my aunt, though she developed typically, ceased menstruation, and it wasn’t until she began undergoing diagnostic tests that she miraculously – and I mean that literally – became pregnant. Her case was such a rarity that it was subsequently documented for the medical books.

Given that history, I began working with my endocrinologist (who had already been overseeing my thyroid care) to deal with my body’s apparent, and unexplained, refusal to produce enough estrogen on its own.

I began hormone replacement therapy (HRT) at a low dose, just enough, it was hoped, to kick-start some sort of reproductive function.

Nothing.

Slowly the HRT was increased, and progesterone was added, but little came of it. The boyish figure remained, as did the uncertainty regarding fertility.

It has now become apparent, though, that the hormone levels needed to have any significant impact interfere with my gut’s motility, wreaking havoc on the already delicate peristalsis. And the last thing I need is another potential trigger for obstruction.

So, given recent events, it’s been decided that the wisest course of action for the long-term health and function of my gut is to abandon the HRT, which means letting go of any hope of having children; of the simple desire for femininity.

When I’m at my best athletically, none of this matters. When I’m at the gym, amongst my people, I fit in perfectly. Maybe it’s because I’m not in my normal, physical state that I feel so vulnerable; that the decision to forgo further HRT, though the right one, has hit me so hard.

Cut so deep.

Because, for the moment, I feel I don’t fit in anywhere. In time I’ll attain my physical best again, sure, and though I no longer have a future in competition, as my gut will not allow it, I will continue to train, to be my physical best, for myself.

But what then?

Life doesn’t exist in the bubble of athletics.

As a woman, I can’t help but feel like, now, I have nothing to offer.

As a child I’d imagine what it’d be like to become a mother, yearned for the day I’d have a body that’d catch the eye of admirers, dreamed about becoming a strong, confident, successful woman.

Of all the things on that list, strength, in every sense of the term, is something I’ve mastered.

I suppose that, now that there’s a sort of finality about it, I’ll come to terms with the cards I’ve been dealt in this area, and perhaps by discussing it, writing about it, I can learn to be comfortable in my own skin.

It has long been something that I joke about in private; am ribbed about by my sisters and closest friends, though always lovingly. Perhaps I’ll now be able to poke-fun about it publicly, and even if no one else joins in out of fear of offending (which you cannot do, by the way. Even if you tried to offend, I guarantee anything said – whether it be seriously or in jest – would pale in comparison to the things I tell myself), you’ll at least be in on the joke.

And by shedding light on the matter, I can feel like I’ve explained myself – whether or not an explanation is necessary/warranted – so that in the future, when I inevitably reunite with old friends or finally meet face-to-face with longtime online companions, I can feel less guilty about failing to meet expectations.

Even if those expectations are entirely my own.

That said, along with the intestinal and physical recovery, I’ll be working over the next couple of years to rebuild my confidence, rediscover my worth, and find my place.

Though it’s been a long and difficult year, the fact that I’m alive and writing this update is in itself worth noting. There have been many trials, yes, but there’s also much to celebrate: My diseased gut is gone, my healthy gut is not just anchored, but functioning. I am free of pain, of the chronic, unrelenting distention/discomfort, and am free, and physically able, to resume any physical activity my heart desires.

The future remains bright, the end of recovery remains in sight, and I will get there, though it’ll take longer than initially planned one year ago.

Fortunately, once the recovery is finally complete, I’ll have all the time in the world to catch up on life — and the health to allow me to live it.

Home (again!)

It wasn’t like last time.

Not even close.

This surgery, and the post-opertaive experience thus far, has been anything but the nightmare experienced back in May/June. That’s not to say that things are terrific — this was the third, fairly major intestinal surgery in under a year — but what a difference from the previous two outings.

The ‘going-under’ part was admittedly more difficult this time around: Perhaps I was hyper-aware, or maybe the memories of May/June were more present than I’d allowed myself to recognize, but the icy, pre-surgical antibiotic burned through the veins with a greater intensity than I recall it having done before. The first, failed attempt to secure the line felt as if the anaesthetist was strumming my nerve like a guitar, and even though the second vein was co-operatvive, the pain didn’t subside, and the antibiotic only irritated matters.

As the sedative crept its way through the vein, I didn’t drift off quite so easily. My ears rang with an intense, unrelenting whir. I waited for my vision to blur, but it refused, and so the whirring only grew more potent, near-overwhelming. The main OR nurse was wonderful, and she held my hand as I inhaled deeply from the mask secured to my face, pumping my lungs with pure oxygen.

I told her I was afraid, but that I didn’t know what I was afraid of.

“Just focus on the breathing,” she whispered. “It’s just the drugs. Everything will be fine.”

When I woke in recovery, I felt pain, but nothing close to the intensity of the previous surgeries. This pain was strong, yes, but not excruciating.

Back in my room, hooked up to the PCA once more, the attending nurse was reluctant to allow the free-use of the Fentanyl (rather than morphine this time), though my surgeon had a no dose limit order, because my respiration rate was low (under 10 breaths per minute), as was my pulse (mid-30s). This made for less-than-optimal pain-control for the first 12-hours post-op, but because I’d experienced far worse, I knew I could manage.

Breathing/heart function was slightly more important than being completely comfortable, I reasoned.

My blood pressure and pulse remained low even after that critical period, however, so I did my best to forgo using the PCA altogether, pressing the button only when things became too intense to manage through other means.

Though a distressing shade of purple, bordering on black, the intestine seemed to react just as well to the surgery as I had; I was able to start drinking and eating soft foods (such as yogurt) within the first 24 hours without much issue.

I was up and walking around, too, and free of any drains, catheters, etc.

Because things were going so well, my surgeon agreed to let me go home much earlier than planned.

“Only because you’re so fit,” remarked the charge nurse, with a smile.

It helps that I’m quite close to the hospital and have a direct route through the ER to the unit should problems arise, and that I’m well attuned to when things ‘aren’t right’, knowing if/when I need to go back.

Plus, I can get far better nutrition while home, and am free of the risk of contracting a hostpital-acquired infection.

“But,” my surgeon cautioned, “you need to act as if you’re in hospital for at least another week. The diet must be advanced slowly and carefully, and nothing but light walking/wandering, activity wise. You can start walking as you normally would in week two, and only in week three can you start, s-l-o-w-l-y, getting back to regular, daily activity.

Then, by the end of March, you should be more-than-ready to resume physical activity, and the recovery as a whole.

But you need to give yourself time.”

I took careful note of his instructions, agreed to follow them as meticulously as ever, and gave him a giant hug.

He smiled, squeezed me back, and told me I was his favourite patient.

And that made my heart sing, because I absolutely adore him.

And so, today I’m home, down 4 pounds since surgery, and will likely lose another few, or couple of few  (hopefully not more), before the intestinal swelling subsides enough to fully absorb what I eat, and before I’m able to take in enough nutrition to reverse the slide.

As I’ve learned, though, it cannot be forced, and I have to be patient. I don’t like the extreme fatigue and weakness that comes with lacking nutrition, nor am I particularly fond of the panic that accompanies this state. But I know it’s temporary, and soon enough, the fatigue-weakness-panic cycle will disappear, just as it did before.

Of course, it all depends on how fast – or not – the intestine rebounds. Things can’t start to get back to normal until intestinal function does, so the one-, two-, three-week guidelines are just that: guidelines.

As was the case before, my immediate focus will be on day-to-day improvements, aiming to end each day stronger, stabler, and healthier than it began; Working to keep the pain/discomfort and nausea in check, and finding ways other than physical activity to alleviate the anxiety caused by, well, inactivity.

There are sure to be hiccups along the way, as there always are, but things are off to a very promising start, and, I think, bode well for the recovery from here on in.

And thanks, as always, for accompanying me as I continue along the journey.

Once More Into The (Surgical) Fray

I could begin by telling you “things weren’t supposed to be this way,” but let’s face it — they rarely are.

In fact, things aren’t supposed to be anything at all: they simply are what they are, will be what they will be, despite one’s best efforts.

Despite the best intentions, a solid foundation, perfect execution, even the most flawless plan can unravel, rather than unfold; Where the carefully aligned pieces fall just out of place, so that what was meant to be an intricate, completed puzzle — pieces tightly woven, interlocked, secured in such a way so that the final image is fit to be sealed and mounted — is instead noticeably flawed; Where a single, mislaid jigsaw skews the entire picture, forcing the players to painstakingly pour over their work, searching for a solution, so they can finally complete the challenge and move on to a new project.

And it pains me to say, but my puzzle is one in need of rejigging.

Rather than detailing each incident at length, belaboring every hurdle, I’ll try to provide an overview of what’s been happening, what will happen now, and where I go from there.

In addition to the removal of half my intestines in May (total proctocolectomy), I had adhesions (internal scar tissue) removed and a stoma revision (the part of my small intestine that is exposed) to fix the prolapse issue — that thing where my guts would snake out of my abdomen.

That ‘fix’ however, was undone as a consequence of the emergency surgery in June. Though to be fair, my surgeon was more concerned at the time with saving my life than  with anchoring/perfecting the intestinal port.

The stoma held up well in the beginning; even with the obstruction in October, the intestine remained firmly in place. By November, however, some instability started to present itself, and December marked the return of the prolapse, and the first of what would be many, increasingly severe, occurrences – sometimes with the intestine refusing to recede (or allow itself to be forced) back into the body for days on end.

(This is exactly what it looks like, by the way. It’s a surgical picture, though, not me. But if you want to see what I am talking about, have at it.)

With each severe prolapse came intestinal trauma, causing what was already suboptimal digestion/absorption to be further restricted until the attack had fully subsided, meaning an average span of 7-10 days of not only decreased caloric intake (due to a regular food intake/volume causing further prolapse), but scarce absorption of what could be ingested.

This has made keeping any weight re-gained since the 30+ pound loss incredibly difficult, and any further gains/complete recovery impossible.

I met with my medical team on February 4, and my surgeon and I discussed the options.

The lesser-invasive scenario — the one we agreed to go with — involves further intestinal resection (removal of more healthy small intestine) to create a new stoma (intestinal port) with careful internal stitching along the abdominal wall to tack the intestine in place. Ideally, this would provide the stability needed to prevent any future prolapse and allow the intestine to function normally.

The downside, of course, is losing more of the increasingly sacred, healthy intestine, which only exacerbates the short-gut syndrome. But if it, indeed, puts an end to the prolapses, then I’ll be able to take in enough extra nutrition without incident to make up for the suboptimal digestion/absorption.

If, however, the intestine prolapses again, the ‘fix’ involves a highly-invasive surgery, where internal scarring is intentionally created to forcibly anchor the intestine into place.

But due to the repeated trauma already inflicted on my gut and my body, my surgeon suggested we try the not-as-invasive option first, as it might be just enough to fully rectify the issue without having to resort to the most extreme procedure.

And that’s the surgery I’m having today.

There is no question that something must be done: every day since that meeting in February has become increasingly difficult, with the past ten days nothing short of excruciating.

If all goes well, it will likely set my overall recovery back about 4-6 months, which is entirely manageable. But because – again, if all goes according to plan – the gut will be given a chance to fully function without impediment, it’s not outside the realm of possibility that the recovery will actually tick up a notch and proceed in a higher gear than before.

But these are just guesses; nothing is guaranteed, and if I’ve learned anything, it’s that  trying to forecast how the gut will behave is a fool’s errand.

All I can do is keep on keeping on, doing everything in my power to tilt the odds in my favour, but accepting that there are things I cannot control, no matter what I do.

And that it’s not my fault – or anyone’s fault – if/when the recovery strays from the planned route.

Detours are a part of life, and you have to take them as they come. If navigated properly, they don’t have to lead you astray; they simply make the journey a little more scenic.

And as I re-evaluate and recalibrate the overall recovery plan, I also have a chance to rework my life-after-recovery forecast.

Prior to May, I’d hoped – perhaps foolishly – that the (what was to be final) surgery would prove the ultimate fix: that I’d be able, upon full recovery, to proceed with life as if the past decade had never happened.

However, I can no longer deny that this scenario will not happen, and perhaps never really stood a chance.

I initially had to shoot for that utopian conclusion, though, or else I’d have felt that I’d held myself, my life, back by ‘not trying hard enough.’ By making excuses. By somehow failing to fulfill my full potential, whatever the ‘potential’ may be.

(Think I’m too hard on/critical of others? You should hear the things I tell/demand of myself.)

What drives me more than anything is athletics: the intensive training regimen, constant competition with previous bests, the feeling of complete, glorious exhaustion after pushing the body beyond what the mind will allow.

It’s where I’m at home, what I’m most confident in doing, and what I love more than anything.

But I know that I no longer have a future in the competitive sphere, as my gut will not allow the predictability and consistency needed to commit to any one pursuit.

What I can do – what I will do –  is continue with what I’ve been doing as of late: training for me. Because it’s how I cope with stress, how I manage the anxiety.

And, for me, it provides that much needed sense of normalcy and routine.

That said, I’ve long searched for something to fill the void, to provide purpose, passion, beyond the physical, and I think I’ve found that in writing.

When not driven to train, I’m eager to write: my mind is constantly composing essays, op-eds, discussions in my head, even if they never make it to ink.

But I must improve the confidence factor; I have to learn to be as aggressive and self-assured on paper as I am in the gym.

That’s something I’ve already begun to work on, and in time, I know writing will feel just as natural an extension of myself as athletics does.

So, after this surgery, as I continue along in the recovery, I’m going to focus on balance: work on finding a happy medium between the training and the writing, and perhaps begin to chart a course for myself, post-recovery, for some sort of future, perhaps a career, spanning the two.

It may not be where I envisioned myself before this all started, but to be honest, I have little  cause to complain about where I’ve ended up; Where I find myself.

I wouldn’t trade the contacts I have, friends I’ve made, for anything. I have the best doctors, the most supportive, understanding network of friends and colleagues, and a family willing to sacrifice anything and everything to see me well.

Things are how they are, not how they’re ‘supposed to be,’ and perhaps there’s good reason for that.

Because how one envisions things should be at one time cannot take into account what may become in the future.

And that unanticipated future could very well be more promising than if things had gone strictly according to plan.

Recovery

A strange thing happens when you’ve been a patient for an extended period: You develop a fear of ‘letting down’ your doctors, of disappointing your medical team. Or, perhaps, this is this something unique to my situation – I’m not entirely sure. Whatever the case, it’s something my GP recognized, and called me on, shortly after I retuned home from the hospital.

I’d had an appointment booked for a few days after discharge from the hospital in July, and though I wanted nothing more than to cancel – I desperately needed a break from doctors – I kept the appointment. As I waited for my doctor to enter the intimate consultation room, questions regarding what I should say, of how I should address the coming debrief, consumed me.

So too did worries of my drastically changed appearance.

He hasn’t seen me since before the surgery, I thought. What will he think of me?

I was embarrassed by my sunken eyes, my gaunt face, frail frame; by my raspy voice, my dull complexion. Even though this doctor has seen me in far worse condition – he’s the one who initially convened what is now my entire medical team, who took me on as a patient when I first appeared before him at barely 60 pounds – I didn’t want to be seen by anyone looking as I did.

Breathe, Alheli. You’re OK.

Those automatic, comforting words echoed in my mind, bringing a sense of calm, just as they’ve done in the past.

He’s your doctor. He’s here to help you recover. You haven’t failed him.

My thoughts were interrupted by the knock signaling my doctor’s imminent arrival.

I watched intently as he initially laid eyes on me, trying to catch an unguarded, honest reaction upon seeing me in this state.

Nothing.

He smiled sympathetically and sat down, pulling his chair close to mine.

“Alheli –” he began, but before he could continue, I broke down.

Goddammit, I silently scolded myself. No. Stop it. You’re fine.

But I couldn’t stop, I wasn’t fine; The tears refused to slow. Perhaps it’s because everything was still so fresh, the experience so raw, that I could not control this reaction. I sat sobbing, describing what had happened, though my doctor was already well aware, having read the reports from the hospital.

But he wanted to hear me tell it, wanted to know what it was like from my perspective.

I apologized repeatedly for “being such a mess, such an emotional wreck.” I’d always look forward to appointments with this particular doctor because we discuss things on the same level. He doesn’t dumb anything down, is always willing to take the extra time to explain in medical terms what he thinks, what is happening, what will be done. That day, however, we could not have that conversation.

And I hated it.

“You know,” he said, “I don’t understand why you feel the need to apologize. When you come to see me I don’t expect things to be perfect, or you to be well. Don’t ever feel the need to put up a front just to please me. When something is wrong, let it be wrong in here.”

That’s the thing: I didn’t want things to be wrong. I desperately wanted things, finally, to be right. I wanted to be well.

I just wanted – want – to be normal.

I took him back to some of the moments that haunt me most, back to the time between the first and second surgery, when it was a constant flurry of procedures and tests.

There was worry evident in the eyes of my medical team as I returned from the scope, bowel perforated. After being ported for yet another CT to see the extent of the damage, I lay in absolute agony, gasping for breath in the hall as technicians readied the machine. The man who’d walk me through the test leaned over and pressed his face next to mine.

“Just hold on a little bit longer,” he whispered. “Keep fighting. Keep breathing.”

I recall the whirring of the machine; the intense injection of contrast into the veins; the subsequent warmth pooling around my throat, abdomen, pelvis, groin.

“Take a breath, and hold it in,” the machine commanded,  and I complied, though it was a struggle.

I was choking just to breathe.

The scan complete, I returned to the unit and to an unspoken sense of urgency. Nurses raced to reattach my IV lines, the PCA, the oxygen, as my surgeon worked to get an OR prepped: “She’ll be in surgery as soon as possible.”

Hours passed, toxins coursed through my body.

Nurses, whom I’ve always assumed are immune to the cycle of life and death, appeared distraught. There were three who separately approached me, asking permission to pray over me before I was sent for the second, emergency surgery. Even in my semi-coherent state, I was taken aback.

This is not normal. Things are not good.

I agreed for their sake: I didn’t expect prayer to influence the outcome, but if it would bring them comfort, then why not?

I then began to wonder if, perhaps, I should be praying; Whether I should ask for protection from God, beg for my life.

But I didn’t pray.

Divine intervention isn’t going to save you, I reasoned. That’s what medical intervention is for.

Down in the OR, I’m met with the same team of residents who’d observed my first surgery; am briefed by the same anesthetist about the ‘going under’ part.

“Do you have any questions?” he asked, wheeling me into a room that was far smaller, more intimate than the one I’d encountered back in May.

“Just one,” I answered. “Am I going do die?”

He stood over me, trying to find words that would comfort, but not promise. “We’ll take good care of you.”

I don’t press him further.

When my surgeon enters, we lock eyes. Mine are filled with tears, his with resolve.

I felt a familiar burn creep up my arm as my vision began to blur. I didn’t have any final thoughts this time around; I simply closed my eyes, exhaled, and resigned myself to the fact that, this time, I might not wake up.

The following weeks, where I was in and out of consciousness, were peppered by hallucinations. One in particular was both recurring and deeply unsettling. Over and over, I’d be taken to the chapel on the main floor, dismembered, and various parts of my body placed in vaults for individual funerals. My mother was there, as was a priest whom I didn’t know, and they argued over which ceremony to give each body part.

“Perhaps a Buddhist service for the leg,” my mother would say. “Maybe a Catholic mass for the arm,” the priest would add.

Repeatedly I’d relive this experience, and it wasn’t until well after my second blood transfusion, when I was entirely conscious and aware, that I fully understood that this did not happen. I mean, I knew it didn’t happen, but my brain couldn’t quite separate the hallucination from reality in terms of feeling it.

And death — it was everywhere: There were terminal cases on my unit, Code 66s (pre-Code Blue) and Code Blues night and day. I’d hear “Baby Green Reset (resuss?)” or something to that effect, over the PA, knowing that, on another floor, an infant was coding.

One day, while having my PICC dressing changed, after having woken from yet another dismemberment hallucination, a Code 66 was called for my unit, which unleashed a rush of carts and hurried footsteps in the corridor.

“Oh my god, is that me?” I pressed the nurse. “No,” she reassured me. “If it was for you, you can bet there’d be far more activity in this room than there already is.”

Every day I’d ask my surgeon if I was going to die, and every day he’d give the same answer: “We’re doing what we can. You just keep fighting.”

Privately he told my mother that, although things appeared to be stabilizing, without an enormous effort on my part, I would not make it out of the hospital.

A nurse who I’d become quite close with quietly pleaded: “You need to fight, you cannot give up. You can’t take it easy or take it slow. This is critical. Please. Please push. Please try.”

Until then, I thought I had been trying. I didn’t understand what more she wanted or expected me to do. Perhaps she thought I’d resolved to just die? I’m not quite sure. But the desperation in her voice told me all I needed to know about my prospects. Maybe she sensed that I honestly didn’t see a way out, that I’d accepted that death just might be what was next for me, and she didn’t want me to dare entertain that thought.

Because if I did, it just might become my reality.

So I fought. Not only for myself, but for my nurses, for my surgeon. I fought for my whole medical team; I didn’t want to let them down. I didn’t want them to feel responsible if I didn’t pull through. So, if not for me, I wanted so badly to survive for them.

I didn’t want to disappoint them.

When sitting on the side of the bed, my body convulsing, and the nurse recommends we “do just one trip around the nursing station,” I say, “no. We’ll do five.”

When the dietician says to “aim to drink half of this Boost by the end of the day,” I say, “no. I’ll drink two of them.”

When my surgeon suggests I “try to start tapering off the PCA (morphine),” I stop using it altogether.

“Boy, when you decide to get better, you really get better, don’t you?” remarked one of he charge nurses.

I suppose so.

Which is why I agreed to that day pass, something my mother, bless her heart, tried to paint as a wild success, but which was, in fact, an absolute nightmare for us both.

I’d just been taken off my entire support system — the TPN, IV, PCA; no catheter, no constant vital monitoring – nothing. By the time we pulled up to the house I was in the throes of a panic attack. I couldn’t breathe, felt completely detached from reality.

“I knew if I just got you out of the car that we’d be OK,” my mom now tells me. “But I wasn’t about to go back to the hospital without you at least setting foot in the house. I needed you to do that much, to get past that anxiety.”

I did manage to leave the car, unsure of what else I could do at that point. If this was all another hallucination, which is what it felt like at that moment, then it was only a matter of time before I woke up. So I just needed to play along, just needed to go through the motions until then.

I forced myself from the car and stumbled into the house, where I faced the next big hurdle: the shower.

The first time my heart failed was back in Ontario, and it happened just after I’d stepped out of the hospital shower. I remember being incredibly short of breath while under the stream of water, of fighting for consciousness as I emerged, trying to stay alert just long enough to dress myself and make it back to my room to call the medical staff.

It’s an experience that remains etched in memory, which evokes the same panic, same sense of complete helplessness when a similar situation is encountered.

So, being not entirely lucid and in a state of extreme physical weakness, I was terrified to shower. My mind repeatedly flashed back to the night I coded and I was so afraid it would happen again.

But this time, if it happened, I wouldn’t even be in the safe confines of the hospital.

So I made my mother sit in the bathroom, phone in hand, poised alert 911 if/when I had a heart attack, as I forced myself through the mundane task of bathing. I gasped for breath between sobs and tried to concentrate on the walls, the curtain, the soap – on anything to keep the brain focused on something tangible, rather than the scene playing out in my head: The one where my throat closed up, darkness crept in, pulse faded…

Mentally, physically, emotionally spent, I returned to the hospital after four hours at home. It was hard enough to summon the strength to walk from the car to the main doors, and then to the elevators which would take me back to the 8th floor, but as I approached those sliding metal doors, I insisted on taking the stairs. Why? Because if I could climb 8 flights of stairs in this state, on the verge of collapse, then I knew I’d be able to tackle them again when less vulnerable.

Even if, on that day, at that time, your mind insists you cannot, you can think back to this moment, Alheli, and tell yourself: Yes you can.

Tell yourself: You’re OK.

I had to stop for breath four times during the brief ascent, but I did it. I made it up to the 8th floor, back to unit 83, and back to my room where I asked the nurse to take my vitals so I could record them in my mind.

You were certain you were going to die today, but you didn’t, and you won’t. Your blood pressure is fine, pulse is strong, O2 sats normal. Remember that the next time the anxiety creeps in; the next time panic takes over. This isn’t going to be easy. There will be other days just as trying a this, but you made is through this one, you’ll make it through the others.

The following day I insist my rehab walk be taken outside. I was intent on walking the kilometer loop, no matter how slow; I was done with hallway wandering. My mind (and body) were telling me I was too weak, so I had to prove them wrong. My mother accompanied me at first, and the first time I ventured out alone, I did so with the extra support of a wheelchair (pushing, not riding). Each day I’d extend the route just a little further, push the legs to work just a little harder.

In a matter of days I could feel the heart and lungs responding: the breath was less short; the heartbeat less intense, less desperate.

And suddenly, I was being discharged, for good.

Though at the time I spoke/wrote with confidence about being home, about continuing the recovery process and rebuilding all I’d lost physically over those months in hospital, I privately remained skeptical about my ability to do so.

The extended period of inactivity and complete immobility had my extremely limber body seized into a tight mass. Whereas my usual stretching routine would include various hyper-extensions, over-splits, and other contortions, I was now incapable of reaching past my knees.

My chest and abdomen formed a single concave unit; it felt as if there were ropes tied to my back at each shoulder blade, pulled forward, around my arms, and tied into a giant knot at my sternum. My deepest breath was still roughly half my actual lung capacity; the partial collapse in the left lung persisted.

I felt defeated just thinking about the daunting task ahead.

You’re fooling yourself if you think you can make it back to where you were, Alheli, but there’s only one way to find out: Just do something — anything. Just get started; you have to start somewhere. 

You don’t like where you are, but what the hell can you do about it now? You can sit around and wish you weren’t here or you can work toward *not* being here, not existing in this pathetic, weakened state. You’re going to recover either way. The question is: are you going to be the athlete you were – and know you still are – or will you use this as an excuse to ease off and ‘take things down a notch’? 

Is that what you’re going to do, Alheli? Just give in?

No. That’s not who you are. You’ve come back before, you can do it again.

This didn’t defeat you and it won’t defeat you.

The first two weeks home I focused on stretching, on lengthening the tendons, ligaments, muscles that had all but lost their elasticity.

By the end of the second week I was able to not just stretch a split, but I could once again push into the over-split. I was able to fully stretch the quads, hamstrings, calves beyond their comfortable ranges. I could finally hold my shoulders back in a proper posture; that knot at my sternum became untied – I no longer felt perpetual suffocation.

This brief sense of accomplishment, of confidence, was shattered, however, the moment I moved back into (ridiculously) light weight work. Every muscle in my body had atrophied: my chiseled legs and arms were reduced to bony extensions; my abdominal muscles – that coveted 6 pack – was completely undefined, though sporting multiple new scars.

You have to start somewhere. Just do something.

So I did, and with every modified push-up, with every lift of a laughable dumbbell or barbell load, I fought the inner voice which screamed “this is such a waste of time. The lightest weight? Are you serious? That’s pathetic. You’re pathetic.”

I bought a top-of-the-line indoor cycle to begin rebuilding not only the cardio component, but to also start challenging the legs. The first attempt of cycling with any sort of tension had me spent in three minutes, so I rested, then did another minute. Rest, and another two, again, fighting that unforgiving, ruthless part of me that cannot – will not – accept less than 100%, all the time, no matter the circumstances.

30 minutes straight or it’s not worth it. Why are you resting? Harder, push harder. You’re wasting your time. You’ll never be what you were, where you were. Really – you’re going to settle for *that* effort? That’s sad, Alheli. Really, really sad.

It’s strange, though, to have, on the one hand, that unforgiving, unrelenting part of myself always asking for more, demanding I push harder, while, on the other side, fighting the anxiety and panic; Having another thought process entirely, saying, “No, you’re too weak. You’re going to pass out, going to have a heart attack.”

Always telling me, “You’re going to die.”

More than strange, it’s completely exhausting.

It was at the first follow-up appointment with my surgeon that I received the go-ahead to return to the gym.

“You cannot undo what’s been done surgically through your training,” my surgeon assured me. “Too often, when patients go home, they sit around, lay around, thinking rest will speed the recovery when, in fact, the opposite is true. They end up getting weaker, prolonging their recovery. Don’t be afraid to push the limits of what you can do. You’ll be fine.”

I was ecstatic — and terrified. Part of me wanted to hear permission to ease up, to ‘take it easy, go slowly,’ so that, maybe, I’d let up on myself.

But my surgeon didn’t give me that. He knows me, knows me physically, mentally, emotionally. Knows that, had he said anything else, I’d have been caught in the cycle of doubt. I’m a person who needs black or white. I need absolutes, or else I drive myself insane with ‘but’s, ‘could/should’s, and ‘what if’s.

He gave me that solid answer I needed, and I went to work.

Three short weeks after retuning home and barely a month out of intensive care,  I ventured back to the gym.

I had my mother accompany me, as I was terrified of what might happen. Not that she could do much for me if my heart stopped or I collapsed, but at least she’d be there, and for whatever reason, there was a sense of comfort in that. She brought a book and settled herself in the lounge as I settled myself on the rower.

Forget speed, to hell with time, just get started.  Start somewhere, do something.

I took it 500 meters at a time, though I did have a number in the back of my mind: 2k.

If I could row at least 2 kilometers, then I knew I could make it 3 the next time out. And once I hit that 3k, I’d know I could do the 5k — my pre-surgery (minimum) daily row.

The 500 meter mark passed, then 1 kilometer. By the 1500 m mark, I knew I’d reach that 2k goal with relative ease, so I resolved to do the full 5000 m; to row my 5k.

Just make it to 3, and you’ll have the 5. If you do 5 today, at your weakest, then you can do it any day.

It’s all a mental game with me: If I’d stopped at the 2k or 3k point, I’d doubt my ability to do the full 5k, even when (more) physically capable. So it was important to crush that doubt before it hit; to push my frail, exhausted body to its limit.

I don’t care how slow the pace, don’t care how long it takes. Just keep going, Alheli.  Keep breathing, keep rowing. Come on. You can do this.

I could, and I did. It took me nearly 30 minutes (28:21, to be exact) of giving it my all, which was roughly 9 minutes slower than my pre-surgery, easy paced 5k row, but I made it.

And it felt incredible.

I followed the row with some assisted chin-ups and other standard upper body-weight exercises (various push-ups, dips, etc.) and some lighter kettle-bell work. It was fairly basic, beginner stuff, but after about 45 minutes, I had nothing more to give.

That wasn’t pretty, but you’re back, Alheli. And that’s all that matters

The first 4 weeks back at the gym were draining, not just physically, but also mentally, emotionally. There were days I’d quietly sob through training, struggle to get beyond the slight figure I’d glimpse in the mirrors; when I had to fight the urge to say “to hell with it all” and never return.

Everything was exhausting; nothing felt right.

People who’d approached me to compete for their given organization (rowing, physique/fitness, triathlon, to name a few) before my surgery now struggled not to stare. One fellow gym goer who’d always comment on my “incredible legs” approached me, asking if I had a sister “who used to come here, I haven’t seen her for a while. But you two really look alike.”

The owner of the gym, with whom I have a great relationship, demanded to know “what are you doing (to myself)?” followed by a bulimic gesture. I sat him down and explained what had happened, and, visibly embarrassed, he apologized.

I didn’t blame him and don’t hold it against him, though I wish he’d have just asked questions rather than made accusations/assumptions.

What little confidence I had in rebuilding seemed to be challenged by something, by someone, at every turn.

You can’t control what others think, you can only control how you react. Have patience, keep pushing.

I was soon back to 5 days per week at the gym, each day rowing 5k followed by weight work. Every couple of days I shave another dozen or so seconds off the first-day-back 5k time, every week I extend the length of the weight sessions, eventually hitting my usual  90 minutes, would increase the load of the weights used. And after 10 weeks or so, I finally began to see results.

Others did, too.

Trainers, colleagues – even the person who’d asked if I had a sister – approached me, noting the “incredible amount of muscle you’ve packed back on,” complimenting my “remarkable, unequalled work ethic.”

“No one could do what you’ve done,” said one industry stalwart.

A nice confidence boost, to be sure, but I was hardly back to my pre-surgical state — not even close, in fact. But things had finally started to turn, to head in the right direction, and the body finally appeared to respond to the efforts I put forth. The small accomplishments began to add up: I no longer doubted my ability to fully recover – I just had to have the patience.

Though the physical recovery was moving along nicely, the emotional recovery hit a snag. I’d been warned of a “serious, post-operative period of depression (read: trauma)” that often accompanies major, invasive procedures and life-threatening experiences, but I was certain that, given the wide range of coping strategies developed during/after the tumultuous childhood years, I’d be able to tackle any supposed depression without issue, should it even hit.

Well, it did hit, and it hit hard. What began as a general sense unsettledness after roughly one month of being home had developed into deep despondency by two.

It wasn’t so much depression in the classic sense; it was more of a deep, simmering anger, bordering on rage. Everything bothered me, everyone irritated me. I didn’t want to be around anyone, least of all myself. I stopped taking calls, stopped replying to emails, didn’t return messages. There were days I wanted nothing more than to erase myself from the internet; Just close all my accounts, disappear, and cut ties with everybody.

Things began to lose meaning. Even at the gym, I found I was forcing myself through the motions. There was no enjoyment, no satisfaction. Just routine.

I became unnecessarily aggressive, needlessly bitchy, on social media and privately apologized to a number of people who’d noticed a shift in tone.

This is just part of the process, I’d tell myself. This isn’t going to be forever. Just keep forcing it, keep going through those motions, no matter how empty they feel. No matter how hollow life seems at the moment, it’s not all for naught. You’ll see. Just keep pushing.

As I neared the three-months-at-home milestone, the darkness began to lift. I no longer questioned why I’d fought so hard to survive; no longer wondered if, maybe, it would have been better – for everyone – if I hadn’t.

That thought crossed my mind more than I care to admit.

I was able to find joy in little things again, able to read for the pleasure of reading, watch a movie without the guilt of ‘wasting time.’

Wasting time. Right. Because you have other pressing, super-important things to do? Adorable, Alheli. 

I started to communicate again, with everybody; Even considered venturing out, being *gasp* a normal, social being.

And on October 2, my 29th birthday, I did.

I met two wonderful women for lunch, and I thoroughly enjoyed myself. I thought I’d be anxious, would want to bail early, to just get home and be alone, but I didn’t. I felt back to my old, sociable self, and it was wonderful.

Later that afternoon, however, I was reminded that things remain far from normal.

I’d taken Brio to the park for a run – it was a beautiful day, and though technically a ‘rest’ day (off the gym), I felt buoyed from the birthday lunch. It wasn’t long after Brio and I had set off on the trail that I felt a terrible pain in my abdomen.

It’s psychosomatic, I thought. This is just a manifestation of anxiety — you didn’t feel it at the time, but the lunch was probably more stressful than you thought. You’re fine, keep going.

But I wasn’t fine. In fact, I was now doubled-over, unable to stand straight, on the verge of passing out from the pain.

Maybe your guts are having a spasm from sitting too long on the hard seats at the restaurant; that’s probably why your back is hurting too. Just focus on getting back to the car. Once you sit down, this will stop. It’s just a spasm. You’re fine.

I stumbled my way back to the car, loaded Brio and sped home, where I collapsed.

Fortunately, my mother arrived from work just minutes later, and she rushed me to the ER.

My obvious distress prompted the triage nurse to take me directly to the back, and after taking my vitals – my pulse was an incredibly low 37 – I was bumped to the front of the line. I was immediately sent for a set of abdominal X-rays, and the results seemed to confirm the doctor’s suspicion of a small bowel obstruction (SBO). I was then slated for a CT scan, and began the timed intake (drinking) of the 2 liters of contrast fluid which would illuminate my intestine.

Normally it isn’t advisable to ingest anything with an obstruction, but having just recovered from renal (kidney) failure caused by the injectable contrast back in June, it was determined the oral route was the better option.

Over the course of 90 minutes I sipped at the mixture, the pain under control thanks to a steady stream of morphine into my IV, and a few hours after arriving at the ER, the CT was complete and the SBO diagnosis confirmed.

I was formally admitted, though a bed would’t be ready until (later that) morning, so I was sent to a more private, sort of holding area which, oddly enough, was the same room in which I spent the night upon readmission following the first (May 13) surgery.

And it’s again in that room that I had the NG tube inserted to drain the contents of my stomach, to prevent anything else from reaching the small intestine, thus providing a ‘rest’ for the gut.

Now, when an NG tube is inserted it’s almost guaranteed the patient will vomit. I knew what was coming, had this done multiple times before, but what I expelled that night horrified me: It was blood. Bright red, and fresh, and lots of it.

I turned to the nurses, hoping for a sense a reassurance, but they seemed just as troubled by the sight. They quietly conferred with each other before slipping from the room to consult the surgeon on call. There was a possibility the blood was caused by the first, failed attempt to insert the NG; perhaps something in my nose or throat had been cut, maybe a vessel punctured, because the blood was so fresh.

I assume this was the case, as no further investigations were pursued, and after about an hour, the contents being evacuated by the NG were no longer tinged red.

I was eventually admitted back to unit 83 where I was greeted with love and warmth from the bevy of nurses who’d cared for me throughout May and June. Though sad to see me back under the circumstances, they seemed relieved to see I no longer looked on the verge of death. That, save for this little roadblock, my recovery was progressing well.

“This is a minor setback,” one nurse told me. “Not even a setback, more of a delay. These things happen, it’s all part of the process. We can get you out of here without another surgery, I’m sure of it.”

It wasn’t long before my surgeon, who I’d met with for a second follow-up just weeks earlier, came to see me.

“When I said we’d be ‘joined at the hip for the next little while,’ I didn’t mean for you to prove me right, or at least not this soon,” he quipped. “Lets fast-track this, shall we?”

He wanted to get the obstruction resolved without further intestinal resection. I was already dealing with short-bowel syndrome – a malabsorption disorder caused by damage to the small intestine, now exacerbated by the removal of segments of the small gut back in May and again in June – which has made regaining the weight lost that much more of a challenge.

I could not – cannot – afford to lose more healthy intestine.  I no longer have a large intestine, which is fine, you can live without your colon, but you cannot survive without the small intestine.

I desperately need to hang on to every inch I have left.

For another 24 hours, the NG tube kept my stomach – and by extension, my intestines – completely empty, draining it of even the natural gastric juices produced, saliva swallowed. Various compounds were put through the IV to help bring the intestinal inflammation down, to kill the pain, and to dull the nausea.

The room I’d been placed in was quite isolated, located in a far corner of the unit, and was quiet, so incredibly peaceful. My room overlooked the Glenmore reservoir, and as I drifted in and out of sleep, I’d catch glimpses of competitive rowers out on the water.

There’s a certain meditative quality to rowing; it’s physically exhausting, yes, but the repetitive nature evokes a sense of calm for me, and seeing the rowers out on the water brought about that same comfort.

The next morning my stoma (the small portion of exposed intestine) was pouring out both fluid and gas – two important signs that the obstruction had begun to disperse. A follow-up scan confirmed the total blockage was now partial, and that I’d likely escape with my intestine intact.

Rather than remain in hospital for another week, however, my surgeon suggested I’d do just as well at home, so long as I strictly adhere to the plan, which would ensure the obstruction would fully rectify: A complete liquid diet for 24 hours, followed by mashed/pureed food for an additional three days.

“Imagine trying to jam an apple through a straw, it’s not going to work.” My surgeon explained. “Your intestines are swollen and inflamed, and there are segments that are incredibly narrowed. Further, there is scar tissue that has yet to work itself out from your earlier surgeries. If you go home and you push the diet, you’re going to end up back here.  I’d suggest you consider putting all your fruits and veggies through a blender for the foreseeable future; not only will it make nutrient absorption easier, but it will take away the constant threat of obstruction you’re going to live with. It’s just the way your guts are.”

Ever since the intestinal rehab, I’ve followed the diet set out by my gastroenterologist, and followed it religiously. Not only did it give me peace of mind that I was doing what’s best for my gut, but if/when something went wrong, I could take comfort in knowing that it wasn’t anything that I did, or rather, that I failed to do.

Or, if I strayed from the plan and something happened (like this obstruction experience – I pushed the diet too far, too soon), I could pinpoint where I went wrong and learn from my mistakes.

When my gut was entirely non-functional and people accused me of relapsing into an eating disorder or otherwise, somehow, ‘doing it to myself,’ I swore that when things were finally fixed, when my gut was healthy again, I’d make a point of doing everything exactly by-the-book.

True, people will always create their own reality, come up with their own explanations/version of events, but I refused to ever again be put in the position of taking blame, of being accused of contributing to/causing what is ultimately an unfortunate roll of the genetic dice.

Yes, I’d been hopeful that I could return to some sort of ‘normal’ way of eating following the final surgery(ies), that I’d no longer have to adhere to the “what my GI team tells me to eat” diet, but in the end, if that’s what will keep my intestines functioning and my body healthy, then it’s a sacrifice I’m more than willing to make.

And, as noted above, if/when something goes wrong, I can take comfort in knowing that I’ve done everything right, followed through with all that was asked of me, so that I won’t blame myself, even if, even when, others do.

And they do, believe it or not. I still have otherwise intelligent, well-meaning people in my life who insist my having had an eating disorder during childhood somehow caused/contributed to the development of ulcerative colitis (UC). Something that, quite obviously, is neither true, nor possible.

Tellingly, these people also tend to get angry when I follow my doctors’ advice, directives to the nth degree.

These folks always seem to know better than my medical professionals.

I don’t blame them for their ignorance, nor do I hold it against them. Everything I’ve been through, both in childhood and in recent years, has affected everyone, and has been hard for everybody. But I do find it sad that, still, some people are either unable or unwilling to get past that stigma. I’ve learned to accept that I cannot – nor should I waste time trying to – change the faulty assumptions/beliefs others cling to regarding my life/my experiences.

It’s their issue, not mine.

Like water off a duck’s back.

But I digress.

The first few days home from the hospital following the obstruction were a challenge: the intestine was on the mend but was still incredibly inflamed and distended. My usual outlet for stress – physical activity – was out of the question, as even light walking produced too much abdominal pressure. But, as was promised, the swelling lessened with each passing day, as did the pain and the nausea.

On the fourth day home, I was able to increase my caloric intake, start re-advancing the diet, so I felt comfortable re-introducing light physical activity. I returned to the park where the obstruction hit, planning to take Brio for a nice long walk.

As I pulled into the parking lot, however, I was overcome by anxiety. I parked the car and proceeded to have a full-blown panic attack. I sat trembling, sobbing, and trying to make sense of what was happening.

What the fuck is wrong with you? Just get out and walk!

But I couldn’t. My mind raced with various worst-case scenarios: Remember, your pulse was dangerously weak just days ago. Your heart’s going to stop. How do you know the obstruction isn’t sitting there, just waiting to hit again? Your intestine is going to rupture. You’re going to get dizzy and pass out. Your diet has been too lacking, you’re too weak.

After about 20 minutes I was drenched in sweat and mentally exhausted, but I refused to leave without taking Brio for a walk, without overcoming that anxiety, dealing with that, for lack of a better term, trauma.

I forced myself from the car, summoned Brio, and off we went. I recited song lyrics to keep my mind occupied, to prevent its straying back into panic territory. I clutched Brio’s leash tight enough that I thought it might fuse to my hand, and before I knew it we’d made our way around the perimeter of the park — twice.

It’s all part of the process. Just keep going. 

The next day, feeling a renewed sense of confidence, I decided to return to the gym. Not for a full workout, mind you, but to get started; to do something. Because there was a fear surrounding that, too.

There was no parking lot panic attack, though I did have a brief anxiety attack in the change room before starting. I forced myself to execute the full 5k row (which, oddly enough, was one of my faster post-surgery times: 22:13), repeating “You’re fine” with seemingly every stroke. I followed the row with a shortened weight set, again reassuring myself “You’re OK” with every set, every rep.

It took another two weeks to start feeling somewhat normal again, for the obstruction to fully resolve and the weight to re-stabilize. When literally every calorie counts, missing even one meal or snack – or the gut being too swollen to absorb everything taken in – quickly takes its toll.

But I’m once again settling into a routine, trying to balance the physical rebuilding with required rest/recovery time; experimenting with the diet, trying to challenge the intestines without entering obstruction territory; challenging the mind and satisfying the appetite for knowledge through reading, writing, and research, but learning to accept that some days the concentration just isn’t there. Some days, the body and mind are simply exhausted, and that’s OK.

I’m learning to relax, and to be OK with relaxing; learning to give myself permission to be still, and sometimes, to be unproductive. Because those days will happen, but they’ll eventually wane, and in time, become rare.

It remains difficult to focus on the long-term when the day-to-day remains turbulent, but I refuse to avert my gaze from that end point: 18 months, I’m told, and I’ll have crossed the finish line I’ve been perusing for nearly a decade.

I’m just shy of the 4 month mark; I’ve now been home for 114 days.

There is one outstanding matter, though. I expect to hear soon about whether the second, final medical bill which continues to climb — presently at $70,000 (no, that’s not a typo) — will be covered or if I’ll have to take out another medical loan. Given that the treatment was medically necessary – and urgent – for something directly related to the prolonged non-functioning gut, I’m holding out hope.

What’s important, I suppose, is that I’m alive; that I cleared the final hurdle and, though I’ll likely experience a few more stumbles before crossing the finish, I no longer question my ability to reach it.

I look forward to the life that awaits on the other side of that line.

Home

Well that was unexpected.

As I sat waiting for my daily meeting with the surgeon, my mind was racing.

Tuesday my hemoglobin had fallen slightly, but the kidney recovery was continuing with the creatinin levels hovering just above the upper-levels of normal. My morning walk was less shaky and a little faster than the last time, and it was topped off by the stairs. Instead of 2 separate sessions, the rehab was combined into one. After a 2K walk, I climbed 80 stairs. Nothing Herculean, but felt far less unstable and not-at-all winded.

In other areas, however, it was one of the harder days.

I wondered whether things were starting to not function again; whether I was headed for another roadblock. So when my surgeon walked in, grim look on his face, my heart sank.
Oh no, I thought. The blood isn’t holding. The kidneys are going. There’s more infection.

Much to my surprise, the news was only positive. My blood was continuing to hold, weight starting to stabilize, kidneys working hard, vitals perfect.

The grim look on his face is just the way he deals with emotion. With tears in his eyes, he asked, “Would you like to go home today? Because I think you’re ready.”

I didn’t know what to say. Of course I wanted to go home, but it’s so intimidating, being without the 24/7 support system. Plus, I’m still experiencing the existing-in-limbo sensation, which is probably one of the harder things to deal with. But I know that will wane, and will likely do so faster if I’m home than if I’m in hospital.

He offered me his outstretched hand, but I knew that’s not what was needed. I stood up and we embraced, tears streaming down both our faces. It’s been a long haul and there were times neither of us thought I’d make it, but for whatever reason I did, and I am so, so grateful.

But the mountain left to climb – the physical rebuilding – is going to be a fight.

For an idea of the toll this has taken, I’ll provide a few numbers (ones which I don’t generally discuss.)

Pre-surgery #1 (May 13), before entering the hospital, I was 130 pounds and 8-10% body fat. Incredibly solid, lean and muscular. I’m now hovering around 90 (soaking wet). Some of the mass lost has been fat, yes, from what little stores I had, but most was precious, hard-earned muscle.

(Take *that* fad-dieters! To hell with your Paleo — you really ought to try the TPN diet. Basic nutrients are fed to you intravenously directly to the heart – the way nature intended, to be sure – and your body mass just melts away. Bonus! Your stomach will shrink so much that you won’t be able to overeat (or possibly eat) again! Sure you’ll feel/look like hell when all is said and done, but at least it’s wheat and gluten free, amirite?!? Plus — THIGH GAP! #ugh)

That doesn’t matter to most people, and in the grand scheme of things should be the least of my worries, given what I’ve endured. But we all have the things that are important to us, the things that we wouldn’t trade for anything, and my athleticism is one of those things. Which is why you can understand why this bothers me so much. And why, even though I’m not at a critically low weight, I feel so physically taxed. A 30+ pound weight loss in under 2 months is fairly hard on the body.

I’m used to being able to wake up and run 5K on demand. Now I wake up and it’s an effort to just get dressed.

And that kills me.

But yes, it’ll get better. And yes, I’ll get back to where I was – again – but it doesn’t make the process any easier or the emotional burden any lighter.

Anyway, being home will have things slowly returning to normal. Though I might not feel entirely normal or be entirely functional for at least 6 months, I know things will continue to progress and that I will, indeed, get there.

Being with my mom will help, and yeah – I suppose I’ll be the loser living with my mom at age 28, but I simply cannot recover alone.

Oh yes, another number people seem to be interested in: Staples – 65 in total. 35 from the first surgery, 30 from the second. Plus 20 regular sutures.

I’m not entirely sure what to do with this blog now – let it be? delete it? continue to track my recovery, but the physical aspect? Keep it for the occasional personal post?

My life hasn’t been the easiest/most enjoyable and I have survived/recovered multiple times, for whatever reason, where others would not have, and frankly, in instances where I had no business doing so.

I have become my surgeon’s pet: he continues to call me his superstar patient, even though I feel (am) nothing of the sort. Unit 83 adopted me as *their* patient, every nurse checking in on me in the mornings for a hug and a chat, whether or not they were assigned to me.

Today, each one came in to give me a hug and cry a little bit and say goodbye. (I cannot wait to return when I’m once again healthy for a visit.)

But there’s nothing remarkable or special about me. I’m just another person, was just another patient. If I didn’t survive this no lives would have changed. Life goes on. People beat the odds – or not – every day. Perhaps I work a little harder, push myself further, than others might in the same situation (especially with the physical aspect), but that’s just who I am.

For all who’ve followed along, thank you so much for reading. Whether you sent messages of support or just privately hoped for the best, thanks.

I’ve shared much more than I ever have/would have about my history and personal life than I otherwise would have, had this surgery (or surgeries, rather) not happened. I’m generally a reserved person, and though I don’t at all mind talking about what I’ve been through, I do my best not to let it define me. Chronically ill was never a label I was willing to accept, and now, without the large gut, it’s no longer a badge I must secretly wear.

But this recovery will be a year a best, likely two before all is said and done. It depends on how quickly the body rebounds. So 2014 will probably continue to be a year of recovery and rebuilding, whether I like it or not. But I’m certain I’ll be far closer to normal come the new year than I currently believe I’ll be.

When I joined twitter, started to get engaged in politics/media, it was meant to be a distraction as I underwent the GI rehab / continued recovery. I needed something to focus on, something to keep the brain stimulated/occupied since the body couldn’t be. People didn’t know where I came from or why I was there, but few asked questions about who I was or what I did in life, and that was nice. I could quietly endure the medical things without people being aware. I might regret publishing any/all of what I have at TMI later on, but for now I think it has helped me cope.

My greatest fear/worry when it comes to opening up about things is that people will look at me/think of me/treat me differently, for better or worse.

I’m just me, and the same person you’ve come to know, either through twitter or offline. I just have a little more baggage than the average person to lug around (or keep in storage, I suppose.)

Every person has a story, it’s just that now you know a little more of mine.

xo

A Turnaround

And just like that, things change.

Before my first surgery I received some wise words not to “text under the influence”, and really, I should have extended that sage advice to writing. Though, I suppose, that means almost nothing would have been written at TMI, but I do regret the way I closed out my last entry. I’ve gone through much of this before, that fear of dying at any moment, before the GI rehab program (’08) when my small intestine was not functioning. I remember going to bed, breath shallow, body emaciated, resigned to the fact that I might not wake up. My mom would set the alarm to check on me during the night to make sure I was still breathing. Not only did I survive, but ended up healthier than I’d ever been within a year; fitter than ever within 2 years.

I suppose it’s because I penned the last entry just a day after I first started eating (small, but normal-ish) meals, after the TPN (IV feeding) was pulled. A day after the morphine was halted. A day after the IVs were stopped.

Everything just sort of went into shock. The body lost the support system it had relied on for a solid month. I felt horrible and panicky and completely lost.

I really should have waited a few days to update, but, well, I didn’t, so all I can do is apologize for the needlessly emotional/panicky update. Everyone has shit to deal with in their lives, and everyone experiences their own little hell at some point or another, and I *hate* putting mine out there, which is why I intended to only update when things were going well.

Yes, misery needs company but I much prefer the solitary path. Pity is the last thing I want, or need.

(But please know all the supportive messages and tweets and FB notes mean so much – all your kindness and love and good vibes/prayers/thoughts are much needed and so, so helpful.)

The thing is, I don’t have patience; I want things to be the way they were before my planned surgery. I want to be/feel fit and strong; I want to take Brio for a nice 10K, want to do my 5K row + 90 min training session. My brain/body is screaming for it, but there’s not much more I can do than take it one step, one day, at a time.

The stomach is atrophied after not being used for a month; it needs to stretch out and learn to work again.

I feel bony and skinny and weak, but I know it’ll take time for the stomach and gut to start to absorb optimally and for me to be able to take in an adequate number of calories again to start to rebuild. In the meantime, physio has me working on strengthening the heart and lungs (and slowly engaging the muscles, too). A week ago I was barely conscious and today I walked a total of 60 minutes plus 50 stairs. Yes it was pathetically slow and frustratingly dissatisfying, but I wasn’t short of breath, my heart wasn’t pounding, I didn’t feel the need to lie down as soon as I returned to my room.

Every day, a little bit stronger.

I’ll learn what the (shortened) week has in store when I meet with my surgeon Tuesday morning. Since my last update, as the narcotics and TPN and everything else pumped through the IV continue to be purged from the system, I’m feeling – mentally and emotionally, if not physically – better. The brain fog has lifted for the most part. Things still echo through my head, but not to the extent they did just days ago. Vision still isn’t 100% clear, but I’m not longer straining to focus on a given object.

Give it another week and these things will have worked themselves out, too, I suspect.

Once again, apologies for the more-than-necessary info included in the last post, and as always please excuse grammar/spelling/punctuation fails/typos.

Hope your July 1st was wonderful. It was certainly a positive start to the second half of the year on my end.

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Flowers (post surgery #1) from my wonderful friends Naheed and Shaheen Nenshi, which I failed to include here until now. These continue to lift my spirits even when I just look at the picture. I truly have the best of friends/family to help me through this.

Fear

I decided to write this even though I feel I am still unable to express myself in the clearest of possible terms.

I wish I could say things are coming along fantastically; that progress is happening in leaps and bounds like it was after my planned surgery, but I cannot.

Much has happened since my last update, and I don’t have all the dates exact, but will do my best to lay out a timeline to explain what has transpired since I last posted.

Monday, June 3 had me sent for an MRI, my abdomen swollen and full-term pregnancy like, followed by an ultrasound with exploratory needles inserted in hopes of reaching/draining possible pockets of fluid around the intestine.

Thursday, June 6 the surgeon scoped the small bowel, and discovered a pinched off segment; unfortunately, the scope also perforated the bowel and toxins filled my body cavity.

I remember coming back from the scope in so much agony – pain worse than any post-op I’ve experienced. For the first time, I lost all control: I’d finally reached my breaking point. I was screaming hysterically, begging for someone to just let me – or help me – commit suicide. This pain was too much, and *nothing* would stop it.

Nothing.

I was rushed for a CT which confirmed the perforation, then crashed. The surgeon performed emergency surgery sometime between June 6 and 7, where it was discovered that a segment of bowel had twisted, wrapping itself behind the stoma, resulting in ischemia (bowel death), which led to obstruction, and was the source of the pain described here.

If the first surgical recovery seemed like a breeze, this one is promising to be anything but.

The MRI and CT in such close proximity – both requiring an intense injection of contrast – sent my kidneys into renal failure. They just couldn’t keep up. Fluid caused my legs and ankles to balloon into grotesque, morbid casts of their former selves.

Round-the-clock cocktail of IV antibiotics to kill the toxins coursing though my body. Hooked up to an oxygen tank because I simply cannot breathe; cannot get enough oxygen into my blood on my own.

There are many days I do not remember from this point (June 10th-ish) on. To be honest, I am not certain I was entirely conscious for many of them. But after a few blood transfusions I finally started to rebound. It was June 25 – or somewhere around that date – that my memory beings to serve me once again.

My blood work started to look up, the edema in my legs disappeared, I was off oxygen. The drains inserted in the body cavity were pulled. They cut the IV feeding and had me start to eat again (with a nicely functioning bowel).

All of this is wonderful, of course. But being so acutely ill for so long has taken its toll.

Every step taken feels like a marathon run. The body I’d worked so hard to achieve, the elite level of fitness I’d gained back after years of intestinal illness, once again gone. (This is a challenge I look forward to, once rehabbing and recovering at home again. Of anything *this* where I know I’ll get back to complete normalcy. Because it’s what I do. I will get back to where I was. I’ve fought back from the skin-and-bones point before, I can do it again. Though not emaciated like I was before the GI rehab program, I’ve still lost far too much body mass.)

The constant high doses – then complete withdrawal – of multiple narcotics (and other things) has me in a state of what feels like perpetual limbo, like I’m existing somewhere between reality and, well, I don’t know. But I feel so disconnected and foggy; I can’t see clearly. Everything echoes through my head.

I went home on a 4-hour pass just yesterday and it was a disaster.

I don’t know when things will start to feel normal again. I don’t know how long this recovery will be. I’m doing everything I’m supposed to be doing to help the body heal, but I am terrified it won’t be enough. I think this is the first time through everything that I’ve honestly questioned my ability to recover. And it horrifies and scares the hell out of me to say it, but it’s what I worry about.

And it’s what keeps me up at night — I’m afraid to go to sleep because I’m so afraid of not waking up.

And I am so sorry to end this post here, but I have nothing more to write.

Ten Terrible, Horrible, No Good, Very Bad Days

Friday, May 24 began, for the most part, as it was supposed to, and by that I mean was unfolding according to the manageable, preconceived series of events I had mentally mapped out for myself.

My surgeon met with me early in the AM, informing me that Thursday’s tests had gone quite well and that my adrenal function was entirely normal, thus ruling it out as a culprit in the unexplained blood pressure drops. There were some lingering questions on the endocrinological front, but those are long-term management issues, a few of which I have been undergoing treatment for, for some time now (extremely low thyroid function, for example.)

So, with the blood pressure relatively stable – if still on the lower end of the scale – my medical team thought I’d be OK to kick off the weekend at home. After 11 days in hospital, I was given the OK to start the next phase of recovery at home. I was a little hesitant, however. Yes, I was feeling pretty darn good and yes, everything was going better than could be expected, but it’s all about the comfort factor, and what seems like a minor incident in-hospital can fast-become a crisis at home, simply because of the lack of resources. But I trust the judgement of my medical team and my surgeon, so I eagerly signed the discharge form.

I had a nice little send-off, too, from a good friend, as Canada’s favourite dragon/serial philanthropist W. Brett Wilson happened to be my floor-mate for a few days, having been admitted on the adjacent ward for an (obviously) unrelated matter. We had a nice little chat – him looking marvellous as always, even when the only accessories are a hospital gown and IV tubing, me looking quite literally like I’d spent the past 11 days in bed – and it was a much needed hug and familiar face that reminded me just why I was ready to go home: I have such an incredible support system – family, friends, medical – that if anything were to go wrong, they’d always be right there to see me through.

You can probably guess what’s coming.

I was discharged at noon and, though not feeling completely confident in that decision, had everything necessary to make the transition to the home-care phase of my recovery a success. I arrived home to an incredibly emotional (for me, a sobbing mess; exciting for her, as she couldn’t quite wag her body hard enough to convey her happiness) reunion with Brio, and a house entirely re-arranged to make every movement just a bit less strenuous as my body continued to heal.
(Because my mom is fantastic like that.)

I made myself some plain tuna mixed with sugar-free, fat-free lemon parfait yogurt, freshly diced avocado and tomato, a twist of lemon and a pinch of salt.

Nothing rich, nothing heavy. Just much-needed protein, fats and a few carbs. The gut was still unable to tolerate much, but as the swelling lessens and motility is restored, so too will a normalized intake.

Shortly after eating, however, I knew something was wrong. My abdomen became distended and firm to the touch, and I was incredibly nauseous. You’e just tired, I thought. The trip home was more taxing than expected, so your guts just need some extra time to relax, settle in. Take a nap and you’ll feel better.

But I didn’t feel better. In fact, I felt a hell of a lot worse. Intense waves of nausea swept over me, alternating with rolling intestinal spasms.

I need to go back.

I stumbled into the Rockeyview ER somewhere around 6:00 Friday night and was promptly triaged, X-rayed, intubated, and admitted. Because my surgeon was not on that weekend, I was put under the care of a general emerge surgical team who quickly established that I had developed an obstruction high-up in the small intestine. They weren’t sure, however, whether this was the primary cause of the total intestinal shutdown I was experiencing, or whether I’d developed an ileus — a common post-GI-surgical complication where the intestine essentially ‘goes to sleep’, or as my surgeon puts it: “the guts don’t like to be handled. It’s common at any point after GI surgery for the intestine to just take its ball and go home for a while, and there’s nothing you can do. You just have to wait it out. It can take hours, or days, or weeks. But the only solution is to wait it out.”

Though having my stomach pumped through an NG-tube — a long, finger-like flexible (HA) tube that’s threaded up your nose and down into the stomach to ensure there is nothing – not even gastric juices – entering the intestine, allowing for a full bowel ‘rest’ and (it’s hoped) speedier end to the ileus, my ‘ileus’ was not behaving in a typical manner. For example, there were plenty of bowel sounds and deep intestinal rumblings, which is something that doesn’t happen during a true ileus. What’s more, after the initial contents of the stomach were completely pumped out, there wasn’t any lingering nausea, only pain.

So. Much. Pain.

The best way to describe it is as follows: Imagine a multi-pronged harpoon, one you’d see in a horror flick – serrated blades, plenty of moving parts – designed to inflict maximum damage. And now imagine that harpoon methodically working its way across your abdomen, left to right, thrashing its way through the tissue, shredding everything in its path, until all that remains is an intestinal pulp.

No moment of reprieve, no period between attacks to gather myself; As soon as one wave ends, the next begins.

By the time my surgeon arrived on Monday he had determined that this wasn’t an ileus, but an obstruction, likely due to the amount of swelling still present in the smal intestine. Not keen on going back in so soon after a major surgery, he suggested we wait this one out too, as post-op obstructions almost always work themselves out without further surgical intervention. He ordered the NG-tube be removed as it wasn’t draining anything substantive, and ordered the PCA pump (morphine every 6 minutes) be re-established.

I also had a PICC line (long IV, inserted above the bend in the arm and threaded up the arm, across the collar bone and down into the superior vena cava/heart) started on Thursday (May 30), allowing for TPN – nourishment through intravenous – to commence.

Though nutritionally stable with the TPN, my blood pressure is once again dipping due to the high doses of morphine required to control the pain — and by ‘control’ I mean make it tolerable enough that I’m not constantly screaming/sobbing.

I honestly do not believe this is an obstruction that will work itself out; In fact, I’m at the point where I’m ready for another surgery ASAP to permanently fix this — I cannot wait it out. I’ve reached my limit: I’ve now been in-hospital as long for this post-op obstruction as for the major surgery itself.

And that’s not OK. And tonight, for the first time, I’m not OK

Here’s hoping Monday brings with it a fresh approach to tackling this setback, so I can finally resume with the planned recovery process.

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Many thanks to Jen Gerson and Alex Muir for the sunflower, balloon, and rousing game of Settlers of Catan.

Everything.

I sometimes wonder if others use a – unique to them, of course – internal dialogue when a situation doesn’t unfold quite as expected. It’s a technique I relied on in my gymnastic days, not just in competition, but for the countless hours of intense physical conditioning.

It’s a sort of selfdelusion coping mechanism that focuses the mind solely on the task at hand, and for me, helped channel the discomfort, doubt, exhaustion into my intense, innate drive, bringing about a sense of calm and enhanced resolve. No matter the factors I had no control over – I’d focus only on aspects over which outcomes were entirely my responsibility: effort, technique, performance, execution. I challenged myself to push harder and work longer. I was entirely responsible for my continued growth as an athlete, improving my physical capacity, increasing my endurance, achieving (and maintaing) an optimal body composition, perfecting my craft.

I’m not talking about Dr. Phil-esque “positive self-talk”, but more of a personal mantra: a few, short words that prevent the mind from straying into dangerous territory, leading to anticipation-induced [insert negative fallout here].

For the most part, I find myself, without prompt, repeating “Come On” ad infinitum, though sometimes the brain goes for a short – but effective – “You’re Fine” when needing that extra kick. It’s what I used to push myself far beyond the people I once trained with, and what still, for whatever reason, allows me to push through the pain/exhaustion/on-the-verge-of-collapse-but-I-refuse-to-slow-or-stop-because-training-is-and-has-always-been-a-personal-arms-race. (People ask how/why I train the way I do — that’s why. It’s an addiction. A passion. A purpose. While some find meditation or music or art to be an adequate outlet, intense physical activity is my indulgence. Through everything, it’s has been my constant; my escape. And one of the few things I have so much confidence in, ability-wise, that there is never the self-doubt or second-guessing that inevitably leads me to selfsabotage pull back from the things or people I care about most.

But I (uh, really) digress. If the latter part of that graf makes it to publication, you can thank the daylong Percocet-T3 experiment for the lapse in judgment.

There is different pair of words I find myself repeating when dealing with the medical, though; It’s something I’ve noted for a while now, but to which I’ve just recently started paying close attention.

I can’t pinpoint exactly when it started, or just how often I’ve relied on those two entirely meaningless words — I mean, I can repeat them as much as I want, but I have absolutely zero control over a medical outcome, and no amount of effort or drive will change that. But those words often run like a chyron across my brain; two simple words, scrolling, from one ear to the other: “You’re Ok”

When the blood pressure drops and everything becomes dark and hazy: You’re OK.

When the pluse fades to 20 and the doctors are calling a code: You’re OK.

When feeling slight abdominal discomfort, only to look down and witness your intestines snaking out from a port in the abdomen, wondering if your insides are just going to spill out everywhere: You’re OK.

When it happens again. And again. And again x 7. Without warning and without mercy: At the gym, at the dog park, on a 10K run: You’re OK.

The first two incidences occurred just before relocating to Calgary for proper diagnosis/treatment (2004). The third on a terrifying night some 7 months ago (the night of the ER panic-tweets), and the fourth between that night in October and surgery this past Monday, May 13.

The multiple diagnostic tests (CT, endo+colonoscopy, MRI) and series of specialist appointments to determine the culprit, wondering if the mass felt in the abdomen are adhesions, an obstruction, or a tumour: You’re OK.

Outside the OR, being briefed by the surgeon, nurse, and anaesthetist. Asked whether I want an epidural, hearing the mandatory risk/benefit speech and being advised there’d be a port in my spine for post surgical access/pain control: You’re OK.

No, stop. Wait. No Alheli, you’re not OK.

Starting to feel weak and nauseous; pressure pushing into my temples as if to crush my head. Chills consume my body and I’m overcome with anxiety — Jesus Christ I’m going to pass out. I ask them to make the decision – they (understandably) cannot. I’m told that, in the grand scheme of things, an epidural/the spinal port won’t change the outcome/duration of recovery, but does prevent instances of unmanageable pain during the crucial, first 72 hours post-op.

I politely decline. (Which I now know was a big mistake.)

Until now I’ve been ready, if not eager, to get this done. But now, mid-panic attack, I’m debating whether to revoke consent. The fear and doubt I’ve managed to suppress until this point completely floods my consciousness. What if I’ve made the wrong decision? What if the surgery I’ve spent years pondering turns out to be the thing that kills me? What if the very thing I’ve been expecting to rescue me from the sorry excuse that had become my ‘new normal’ life, in the end, does so by simply ending it?

Enough. No more. Just stop thinking. *Deep breath.* Good. Now take another: You’re OK.

Prone on the operating table — a hard, T-shaped contraption — arms outstretched, strapped to individual rests. (Is this an OR or an experimentation room?) The walls are bare, the air like ice. The anesthesiologist plunges a pen-like IV deep into the forearm and slowly injects a thick, burning substance. My surgeon asks me to tell the residents what’s being done and why: He sees the terror behind my silence and wants to bring back the calm, medically informed patient he knows so well before I’m put under.

“Total proctocolectomy and possible small bowel resection; fixing a recurring prolapse, adhesions and partial obstruction: ileo revision.”

The calm, rational Alheli returns. Yes. This is why I’m here and yes, this is needed. As manageable as life had become after the second GI surgery, things were far from normal and nowhere near ideal. Though sitting dormant in the abdomen, the large intestine continued to flare with Ulcerative Colitis (UC). The pain was gone, yes, but a constant distention and chronic discomfort remained. Add the UC to my family history – father and maternal aunt both deceased from colorectal cancer – and the odds were not in my favour. In addition to the endless treatments for UC – none of which are particularly easy on the body – and a time-bomb ticking away in the gut, I faced a lifetime of yearly scopes, biopsies and the sort, to detect any cancer during those crucial, early stages.

Not really a matter of if, but when.

Though back to elite-level fitness, I was unable to commit to any one sport or competitive route, as the gut remained too unpredictable. Same goes for school, work, life.

With UC, nothing is predictable.

I was terrified of committing to anything long-term, as my health status could change in a matter of hours. One flare-up would set me back weeks.

Chronic exhaustion. Cannot concentrate or focus or think. Emotionally, physically, and mentally drained. All. The. Time. I’d already reached the limit of the ‘quality of life’ scale insofar as what could be reasonably expected given the circumstances. And, to be frank, there wasn’t much quality there. So yes: I could have opted for a far less invasive surgery and just fixed the issue with the small intestine (Option A); Or, since he’s going to be digging around in there anyway, I could allow my incredibly talented surgeon in whom I have so much confidence and trust to functionally cure me of UC (it affects only the large intestine), sparing me from all further treatments, and virtually eliminating the risk of colorectal cancer.

The surgeon offered to spare a small portion of the large intestine — just enough to reconnect the two intestinal segments and close the port. The UC would be dealt with, but the (considerably smaller) cancer risk would remain, as would the high-frequency screening. So, Option B: overall less traumatic than a total -ectomy, plus the ileostomy is closed.

I spent weeks meeting, consulting with my medical team – the GI folks, the surgeon, my GP – discussing in detail the pros and cons of each possible path, debating the potential rewards/regrets I’d experience with A, B, or C.

In the end, I decided on the most radical, most invasive, and most permanent (Option C). The surgeon was encouraging me to go with B (the internal reconstruction route) but I’d gone to considerable lengths to consult carefully with everyone involved in my care, particularly the GI team who, after our final meeting, agreed that my preferred route was indeed ideal or me, given my history, lifestyle, and ambitions. (Which is why what my surgeon told me shortly after surgery meant so much to me.)

The ileostomy has never bothered me. In fact, few people (until now, I guess) are even aware it’s what I’ve been living with since ’06. It’s what allowed me to return to my active lifestyle; train harder than I ever had, eat the high volume of food necessary to re-establish and maintain the functionality of the lining of the small gut (again, background here); never again tied to a bathroom; finally free of pain.

And nobody knows. Or knew, rather.

Even now – while training, for instance – people haven’t a clue. And why would they? What my ileostomy amounts to is having a small drainage pouch attached to my abdomen, collecting fluids. People can’t see it, it’s not intrusive, and it’s incredibly easy to manage. I have zero interest in going back a life dictated by the gut. With the ileo, it just does what it does and I go on doing what I do, and so long as I don’t do a belly-flop on a cement floor or purposely jam my lower, right abdomen into hard objects, we get along just fine.

So yes: Total proctocolectomy and possible small bowel resection; fixing a recurring prolapse, adhesions, and partial obstruction: ileostomy revision.

And yes, Alheli, You’re OK — my final thought before nodding off into an induced slumber.

—–

It’s been a while since I last posted, and while things have continued to progress well, there have been a few setbacks. I needed to reconnect to the main IV because the gut was just too swollen for adequate uptake of liquids unassisted.

While Sunday started off typically well, I was weak and dizzy with plummeting blood pressure by mid-afternoon, and the evening brought intense pain and nausea. The veins weren’t cooperating either and the ICU team had to be paged to start the IV site because my veins were collapsing. By about 9:00 Sunday night, a wonderful group of nurses had converged around my bed to distract me while they took turns trying to locate a viable vein. They decided it’d be a Girls’ Night in my room, since my roomie was out on another pass, so we talked about anything and everything. And it was wonderful. This group of women – these dedicated nurses – are what nursing is, and should be. I cannot thank them enough for working so hard to keep things – and by things I mean me – calm as the IVs were forcibly threaded into multiple veins until one finally took.

4 litres of fluid were pumped in overnight, and Monday was a sort of turning point for fluid uptake. The surgeon was OK with the ‘top-up’, but wanted to challenge me: If the fluids you’re drinking aren’t working, perhaps you need something more potent to help ease the passage across the intestinal lining. I could prolong the gut’s recovery and go the easy, comfortable route (IV plus drinking as desired) or I could force the gut to step-up — Potent bullion by the bowlful, bottles and bottles of Gatorade. It’s unappetizing and uncomfortable, especially given the only moment of abdominal comfort is when the gut is entirely empty, but the purpose was to prevent that intestinal lining from going dormant or slacking off (because this is what happens when it does). Yes, it was the job of the large intestine (fluid recovery) but it’s your job now, (small) gut. The sooner you co-operate, the less painful this will be for us both.

Yes I was just talking (or thinking) to my gut. Shut up.

I took on my surgeon’s challenge and told him to pull the IV. As predicted, it just added to the cramping and distention, but by Tuesday the small intestine and the bladder had decided to work together, possibly because 12 Percocet per day just doesn’t kill pain the way (up to) 240 Morphine injections per day had.

So the hydration issue was taken care of. Why, then, the continued, drastic drops in blood pressure? The dizziness? The temperature fluctuations? Was it the Percocet? Possibly, but that had been ruled out after day-long experiment substituting Percocet for Tylenol-3s. The only apparent change was a sharp increase in pain, plus greater dysmotility.

I’ve said before how incredibly fortunate I am to have the team of doctors and specialists and the surgeon that I have. When there’s a problem, they are not the ‘wait and see’ sort.

My surgeon had been working the phones Monday and late into the night Tuesday, and when we met Wednesday morning, he proposed that he could send me home in the next day or so, “but if you fall and crack your head on the pavement because your blood pressure dropped again, that’s going to be a problem.”

Seriously – I love this guy. He’s like House, but without the addict or asshole factor. He’s diligent, and brilliant, and witty as hell.

He spent some time going through symptoms I’d been having prior to surgery regarding dizziness and low blood pressure, and he suspects there is an underlying endocrine or adrenal deficiency that has yet to be dealt with. So, he offered, he could call up an internal medicine colleague for a full assessment and consult, and see what s/he had to suggest.

“But,” he cautioned, “it depends on who’s working today. Some of these folks are the best you can find; others are completely useless. So I’ll see who’s on today, and if I like them, you’ll meet today. If not, well we’ll see who’s working tomorrow.”

“I suppose I shouldn’t be saying that out loud,” he notes. “Ah well, it’s true.”

Love

I met with a lovely doctor of internal medicine Wednesday afternoon, who, after an hour-long consult and exam, briefed her partner and drew up a plan of attack. There is definitely something here that needs to be looked into, and it’s very likely a new (or, ongoing but unidentified/lumped in with gastro symptoms until now) endocrine issue will be pinpointed. Which means it will be treated. Which means I’ll leave here not only healthier GI-wise, but endocrinologically (is that even a word?) too.

I’ll be going for a series of tests Thursday morning, and will reconvene with the entire team on Friday to discuss the results. Either the culprit will have been identified and a treatment process will commence, or various causes will be ruled out but they’ll want to run additional tests, or everything will come back normal and we’ll know definitively that this is just my body’s way of reacting to the trauma of surgery.

And that’s the most up-to-date of everything I can offer. Things continue to be touch-and-go: There aren’t ‘good days and bad days’ per se, but rather tolerable and less-than-tolerable moments. There are certain hours – usually when the gut is completely empty and nothing but Percocet is coursing though my body – when there is relief from the ever-present, nauseating ache and intermittent stabbing, burning pain. It’s during those times that I get up and move around: hit the stairwell for some (slow. soooo slow. And yes – it’s part of my dictated recovery) climbing to keep those leg muscles engaged; roam the various wards and discover new hallways and corridors to explore. Or, like this morning at 5 AM, get locked in an apparent private stairwell and have to escape through a fire-escape door on a roof, walk down grated stairs in nothing but a hospital gown and slippers, prance across cedar gardens to flag down a construction worker to point me toward Emerge, because, as doped up as I am, I do know where I’m going from there.

And yes I have it all documented with pictures, as I’d gotten up early to hit a certain windowed stairwell to get some pictures of the sunrise. So I just kept snapping pictures with my iPad as I wandered like and escaped mental patient around the hospital grounds. I would blame the Percocet, but this was all me. Because I was determined to get some sunrise pics to post here in the future and because being up and moving hurt so much less than lying down at that moment.

I’d plan on sleeping in Thursday, but I have some tests that need, um, testing? I think my brain has had enough for tonight.

And once again: Apologies for what are probably multiple egregious spelling/grammar/punctuation errors/typos. At this point I’m satisfied if I can manage to get the words out in a semi-coherent manner.

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Nurses playing with the iPad during our Girls’ Night.

Saturday Night at the Rockeyview

There have been moments where I sincerely questioned my ability to make it through to the weekend, so it came as a lovely surprise that my roommate be allowed to escape on a day-pass, leaving me to enjoy some much-needed quiet time. I’m fortunate that mine is a room with a view, providing a big-sky panorama of City Centre to the right, and Nose Hill park in the distance straight ahead. At night I leave the blinds open, allowing me to drift in-and-out of consciousness as the lights from a city that rarely sleeps provide both distraction and comfort.

Surgery went well on Monday: 4 hours in the OR, slightly less in recovery. Altogether, a 7-ish hour ordeal. I was expecting/worried about the post-operative shortness of breath and disorientation – two fairly common side-effects, and both of which I’d faced to some degree following GI surgeries 1 & 2. But this post-op experience was something entirely foreign: the body rigid with pain, seizing, completely unable to regulate the signals my nerves were screaming to the brain; the brain unable to respond appropriately to even the strongest/most potent mix of narcotics.

By the end of Tuesday, however, the pain-management was finally under control, and my surgeon saw to it that there were zero restrictions to the PCA (Morphine): a high-dose injection every six minutes allowed enough pain tolerance to be able to get up and walk around, which, frankly, is the *last* thing one wants to do after having had – quite literally – half one’s guts torn from the body.

Tuesday evening also saw the introduction of small amounts of food – mostly ‘soft’, easy-to-digest things like yogurt and banana – and by Wednesday, I was tolerating basic liquids, too: Diet Ginger-ale, water, broth.

My surgeon has been incredibly pleased with the progress thus far; he calls me his “superstar patient” for the milestones I’ve been hitting in days, rather than weeks. He also, for the first time, told me he was convinced this was the right decision – that this course of treatment I opted for, though more invasive and more ‘permanent’ than the other options presented to me, was indeed the right one. That he can see me living a good life after this.

Those words mean the world to me, and right now, might be all that’s getting me through these nights.

The catheter was pulled yesterday, as were the HemoVac (internal) drains. The main IV was removed today after another round of antibiotics, and this afternoon I began to transition from Morphine to Percocet. Though I’m slightly sorer than I’d have been with the drains/tubes intact, the body seems to be doing a fair job of once again taking over the various functions those external tubes temporarily provided.

Of course, the longer those things remain in the body the higher risk of infection and complications, so it’s a good thing that I’ve been able to rid myself of them fairly quickly. It does, however, take the level of discomfort up that extra notch, as the body tries to remember what signals to send for various, normal functions. (The worst is getting a full-on fever – body dripping with sweat and radiating heat – for what amounts to a full bladder. Seriously body – not necessary. At all.)

And that’s about all there is to say for now. Thanks for the kind messages and even kinder thoughts. Will check in again soon, so long as things continue to progress well.

Apologies if any of this made zero sense, grammatically or otherwise. Writing under the influence is far easier said (or imagined, rather) than done.

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View from giant room window one.

Why TMI?

Seriously — why?

To be honest, I’m not sure. In fact, I’m not entirely certain this – a sort of informal, open journal – is a wise decision. But people seem to be interested, and though I’m not one to write/talk about myself unless specifically asked, I suppose a separate space to rant  write at length will serve as a welcome distraction/outlet for me, while keeping those who found this page by googling ‘stupid, shitty blogs’ who wish to be kept up-to-date, informed.

Or, if not informed, at least entertained by the inevitable drug-induced diatribe and too-much-time-on-my-hands over-analysis of everything.

In the meantime, if you’re unfamiliar with the history, you can read an incredibly brief synopsis HERE.

If things go well this morning, I’ll be in touch soon. If not – well, then I won’t.

It’s going to be invasive, and it’s going to be painful; Recovery will be slow and frustrating. But if all goes according to plan, come 2014, I’ll never have to deal with any of this ever again.

—–

Updated ABOUT page here