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.

Advertisements
Standard

3 thoughts on “Everything.

  1. Marisa Betteto says:

    I love you Alheli I pray for you all the time. I want nothing more than you to achieve everything you want in life and just be happy. I wish you were closer and then I could be there for you…just know that I do think about you and I really pray that all of your hopes and dreams come true in life….

    Like

  2. Thanks for the effort it took to write that update. It certainly puts my cramped calf muscle in perspective!
    Funny thing… I checked my dictionary for the definitions of “courage”, “resilience”, “determination” and “guts”. All the words were gone in each entry… replaced by just your picture.
    Personally, I think the surgeon isn’t being entirely honest with you. Apparently, he has not removed your gut, just transferred it from your body into your brain. You seem to have a double-share up there.
    Hang in there, my dear, as I know you will.
    You are an inspiration to us mere mortals.
    We are so lucky to have you as an example and a teacher.

    Doug

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s