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.

20130701-204157.jpg

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.

20130602-211610.jpg
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.

20130522-232024.jpg

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.

20130518-205059.jpg

View from giant room window one.