(For those seeking a quick link to Project Smile: www.gofundme.com/apsmile )
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When you want nothing more than to be well – to be seen as being well – after being ill for an extended period, it’s difficult to let on when something goes awry, if/when a new problem surfaces, because over time, one begins to develop a sense of shame about it; an embarrassment that you’re not only still unwell, but there may be another issue to deal with, a further delayed recovery; more treatments, another detour on that road to wellness.
It’s for that reason that I remained silent when, a few months back, a lump was found in my right breast. I harboured the fears quietly, stomach in knots for weeks as I awaited test results. (Being on the estrogen-progesterone cycle, the elevated risk of breast cancer is always top of mind.)
I wrestled with how, if need be, I’d disclose a new diagnosis; introduce this new part of my medical journey.
Thankfully, the how-to-best-address-the-situation was a decision I never had to make, as results ruled out cancer, allayed fears of a tumour. It’s not entirely clear what the lump was, but because I have so little breast tissue, it may have just been a fibroid/other benign mass that otherwise would have gone unnoticed had there been denser tissue surrounding it.
(I do have a follow-up scan booked for June, however, as a precaution.)
In addition to the solace the nothing-to-be-concerned-about-at-this-point diagnosis brought, was relief that I’d said nothing; that only my mother and I (and my GP, of course) knew what was happening.
“How embarrassing,” I thought, “to think I’d have worried people for no reason at all.” I couldn’t help but feel as if, without a dramatic, dire diagnosis, I’d be seen as having made a seemingly trivial matter into something more than it was, even if that ‘more’ was what had been feared.
It’s this thought process that keeps me from updating more regularly, and why, when coming down with what was thought to be a severe respiratory/gastro virus combination (yes, I had my flu shot) I did little more than make passing mention of a fever, even as I spent the week shuttling myself between home and emerge (my mother, still in Ontario, had been away for weeks) in the early morning hours for IV hydration and electrolytes; my body struggled to combat severe dehydration, the inflamed gut unable to carry out even basic absorption duties.
Though scheduled to be away for the entire month of February, given my worsening state, I asked mom to cut her trip short, and she did, flying home Sunday, February 22.
I’d spent that Saturday-Sunday overnight period at the hospital getting ‘juiced’, and once home, alternated between sleeping and eating what little the gut would tolerate.
Because it was Oscar Sunday, though I felt like hell, I found Twitter a welcome distraction to snark along with everybody else. “It’ll do you good,” I told myself, “to keep your mind busy, even with trivial matters.”
After a bit of enjoyable banter, I made myself a snack, having somewhat of an appetite for the first time in days.
But it wasn’t long after I’d finished eating that things began to rapidly deteriorate, feeling not just unwell, but frighteningly so. I was chilled to the bone and shivered uncontrollably even as my temperature spiked to 104. I sat frozen in place, too weak to move, though I desperately wanted nothing more than to sleep. I called for my mother, who suggested we go to emerge, but I was simply too exhausted.
“In the morning,” I said. “Please, just let me sleep.”
She settled me in on the couch and herself on the adjacent chair; she’d been awake now for over 24 hours, had to work in the morning, but kept vigil, as always, without complaint.
It’s when, after a couple of hours, I tried to get up, that I knew I was in trouble. My vision blurred as I struggled to remain conscious; I couldn’t see, couldn’t hear anything. My legs buckled, body convulsed, heart beat so rapid and furiously I thought it might burst through my chest. And I couldn’t breathe. Each time I tried to take a deep breath I felt a familiar stabbing in my lower back, just beneath my ribs. This was a feeling I recognized from 2013. Just as I know obstruction pain, I knew this pain — this was lung-collapse pain.
I – we – didn’t think I’d make it to hospital.
Upon arrival, the crash cart was waiting. I was rushed through triage, taken back where I met with the same emerge doctor I’d seen the previous night/early that morning, and he was visibly startled by the drastic change in circumstance.
It was a race against time to secure the multiple lines needed not only for IV and drug delivery, but for injection of contrast during diagnostic scans and, if need be, anesthesia for surgery.
The veins, of course, were less than cooperative, either collapsing or blowing outright. It took about a dozen tries before two good sites were secured, during which time blood tests and cultures were examined, doctors working to determine just what was wrong.
My liver counts were all over the map, and there was indication my gallbladder was in distress. On top of that, I’d developed sepsis – the cause of that uncontrollable fever. Potent IV antibiotics were initiated as I underwent further physical examinations, spending the better part of the night under the care of a surgeon whom I recognized from my 2013-2014 hospital stays. Like my (GI) surgeon, he was happy to discuss the medical things in detail, explaining what the concerns were regarding the gallbladder and liver, the connection between short-gut syndrome and various gallbladder and liver ailments, and, depending on what the diagnostic tests did or did not show, the various options/scenarios I’d be met with.
And, it turns out, we share an interest in politics. So, though I had nearly no ability to speak – my voice had been gone for days – I managed to enjoy a good-natured back and forth, which not only helped lighten the mood, but brought a welcome sense of comfort; a feeling of normalcy. It’s those little things that have the greatest impact when events are chaotic, and as frightening a situation I was in, that surgeon went out of his way to lighten the burden.
And I am so, so grateful for him.
I was formally admitted that morning and moved to Unit 82, the ward just down the hall from my usual home on 83. The IV antibiotics ran round-the-clock as diagnostics continued: Ultrasound, X-ray, CT, and ultimately, a specific, 45-minute long MRI (MRCP). While the CT definitively diagnosed the pneumonia and partially-collapsed lung (I knew it!), the MRCP was to determine whether I’d developed ascending cholangitis (infection/blockage of bile ducts in the gallbladder) or sclerosing cholangitis (scarring/blockage of bile ducts in the liver), both of which, I learned, are complications of my short-bowel syndrome. And, given the sepsis and areas of pain/inflammation (not to mention the results of the blood work), it was suspected that one of those two possible diagnoses would be the source of infection, meaning some sort of surgery would be required.
Because there has been lingering concern over my liver, the constantly fluctuating, and sometimes alarmingly high, counts always raising red flags, I expected the MRCP to finally confirm what had long been feared: liver disease/sclerosis, more fallout from the years of untreated ulcerative colitis. A diagnosis which would once again throw the recovery into question; would require new doctors to be recruited to the team, further treatments, and present a once-again uncertain future.
You can imagine the delight shared between myself the and medical team assigned to me as they shared the results of the MRCP: No signs of infection or blockage in either the gallbladder or liver, and zero indication whatsoever of disease in either organ.
Not that the sepsis and pneumonia weren’t incredibly serious in themselves, but knowing that’s all this was, a temporary and very fixable bout of illness, brought me to tears.
Though unexpectedly sidelined for a few weeks, everything else is still a go, recovery remains on track.
I still had to finish the course of IV antibiotics, though, and the partial-collapse of the lung had just alleviated, so I was transferred to my ‘home base’ (Unit 83) to finish out my hospital stay, where I was met with the usual smiles, hugs, and tears from those who’ve cared for me so many times.
And though too busy to stop in, hearing my surgeon’s voice in the hall as he made his morning rounds provided so much comfort.
Just shy of one full week after being admitted, I was discharged from hospital and allowed to finish the antibiotic regimen orally. And since returning home, things have progressed incredibly well. Though I did return to emerge a few days post-discharge for hydration help, I only had to do so once before the infection finally waned enough for the inflammation in the gut to subside.
It goes without saying that the weight has suffered. Three weeks ago I was just under that 100-pound mark (99.4). Today I am 92.4. An unwelcome and frustrating setback, yes, but one that was beyond my control. What’s important is that the gut is absorbing (as best it can) once more, and my intake is nearly back to where it was before this little episode. It’ll be another week at least before I venture back to the gym to continue the physical recovery, as I need to regain my full lung capacity, energy reserves, and the ability to take in an adequate caloric surplus to ensure the weight moves in the right direction. But the losses have stopped, the number on the scale has remained stable for three days now, which means the gut is working and ready to move ahead.
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The final of three, pre-treatment appointments with my oral/dental team was set for February 25, but due to the, um, ‘detour’ detailed above, I had to reschedule. That appointment’s date is yet to be determined, but I should receive confirmation of a date by Wednesday, the appointment expected to happen sometime within the next two weeks (when all team members are available), with treatment beginning soon thereafter.
In the meantime, I’d like to touch on something I’d opted not to go into detail about, as it’s not my intention to mix the emotional with the medical, especially when it comes to asking for financial help. I am not interested in playing on emotion, do not want to garner sympathy-donations. I know Project Smile could be funded in a matter of days with excessive/viral media coverage or dramatic woe-is-me blogposts or YouTube videos, but I simply refuse to engage in that sort of, for lack of a better term, marketing.
If people are interested in, and able to, offer financial support: wonderful. But I’d rather fall well-short of my funding goal with donations given out of a genuine desire to help, than surpass that $100K mark through manipulative means.
That being said, I feel it’s important for you – those who’ve donated, advocated, or sent messages of support/encouragement – to know just how profound an effect you’ve had:
My medical journey, one which has now stretched beyond a decade, has been a lonely one. Not that I’ve been without support: I have an incredible, close-knit network of family and friends who are always, always there if/when need be, not to mention a medical team who are second-to-none.
But it has been a struggle to find my place; feel a true sense of belonging. The long, solitary nights, largely isolated days, tend to wear on any sense of connection. One can’t help but feel largely alone, generally insignificant; existing without purpose, contributing nothing of merit.
This is one area I choose to endure quietly, some days/nights are less heavy than others, but in the weeks before I launched Project Smile, I’d all but abandoned any sense of worth. My heart was heavy, confidence non-existent, and I felt completely lost; at sea without a compass, drifting from one day to the next.
This wasn’t depression, but simply a sense of loss of direction; loss of belief in the post-recovery future.
And then, you changed everything.
I launched Project Smile with little hope, and even fewer expectations. I thought, perhaps, I’d receive support from friends and family back home, and maybe even donations from my lovely little network here in Calgary.
I could never have imagined the outpouring of support that followed: the incredible generosity and advocacy from people I’ve long admired, people whom I so feared would think less of me for asking for help.
The donations, messages, and e-mails I’ve received from names I’d never expect to see attached to such generosity, kind words, friendship, and love — my heart was lifted out of the darkness.
“I don’t think you know how many are behind you,” was a common theme among the messages.
I didn’t know.
Honestly, I had no idea.
I did not know.
But knowing I belong, that I’m valued, by some of those I respect the most – that means everything.
Everything.
Though the events surrounding, and the ultimate falling-though of, the dental/oral treatment’s funding, the agonizing decision to go public and launch the GoFundMe, allowing myself to be seen still-unwell, has taken quite a toll emotionally, the support I’ve received, the generosity that continues to pour in, has emerged as the unexpected light at this tunnel’s end.
Even if, after this post, no further contributions are made to Project Smile, what my heart has gained – what you’ve given me – is something no amount of funding could ever secure.
You’ve helped in ways far beyond words’ ability to describe.
Thank you, thank you, thank you.
You changed everything.
xo
Aside 