Category: My Healing Journey

He is Healing: The Journey Continues

1 August, 2023

A month or so ago, I received an incredible get well card, which was incredible not only because of the thoughtfulness of my sister, Michele, who trolled facebook soliciting greetings from my friends and family and then putting together, with great expertise and love, this gift. It was also incredible because it was an audio recording. Full of beautiful words and original music, it’s almost beyond anything I’ve experienced. I’m listening to it now as I write these words.  

I, too, had in mind to put something recorded together (music) as a reciprocal thank you to everyone who partook, but I’m afraid the reason for the get well card has interfered with my ability to plan out anything more than a day or two. Thus, I write you these words of thanks.

But I’m ahead of myself. The reason for the get well card in the first place was due to the re-emergence of the strange form of blood cancer (Multiple Myeloma) I was first diagnosed with back in 2020 (remember that year?). It was kind of perfect that the world got Covid during my initial cancer treatments, because I didn’t suffer from the common affliction of many cancer sufferers: feeling like the world has left me behind. That (cancer) journey came to its conclusion in September 2020 when I’d had a stem cell transplant and put on a maintenance drug that would keep this cancer away a further five years (Multiple Myeloma is treatable but not curable—for now).

So, the remission-bliss came to an abrupt end back in March 2023, two and a half years shy of the five I was counting on. In February 2023, Daniel and I caught a flu so wicked we nearly wished for death to release us from it, but as Daniel recovered nicely I came down with a nasty cough that would not abate no matter what we did. This went on for several months until my Oncologist, Dr. White, called us in to his Halifax office and gave us the distressing news that my cancer had relapsed (I secretly harbour notions that if I just change my diet or attitude or something that perhaps I could control, it would never have come to this, but this line of reasoning only really proves how much I can beat myself up unnecessarily for things completely out of my control). Doc explained that my crashing white blood cell and platelet counts he’d been seeing on his weekly reports proved it (the cough served only as a diversion from the underlying relapse, but I’m sure it was one thing more than my body could deal with as the cancer resurfaced) and he recommended I go on a new clinical study that, among other things, would fulfill the promise of more attentive care than I’d been getting thus far courtesy of Nova Scotia Health. The treatment requires weekly drives in to Halifax and lots and lots of drugs and injections with strange sounding names. For the record, I’m on Pomalidomide, Daratumumab, and Dexamethasone, the latter being a common steroid used for a variety of purposes in hospitals, which for me causes a feeling of euphoria followed by a specular descent into all those feelings that could be described as not euphoric.

I’m now into my second cycle (of four) and we still haven’t seen the dial move on the MM front (although the cough is long gone, thank God). Dr. White says it usually starts to improve in the third cycle, so patience must be my middle name right now. I’m very thankful for a few gents at the local Baptist church who drive me into Halifax when the side effects overcome me. I reached out to them after an action-packed return trip where my eyes went double-vision and I found myself hurtling down the highway with one eye shut and no depth perception—this is no way to heal. So yes, kudos to my newfound Baptist bros.

Where am I now? I live day to day. One day, such as today, I’m full of energy, the next I can hardly stay awake and all optimism flies away beyond my grasp. But regardless of my particular mood, I want to say to all those who have taken the time to send me this beautiful audio get well soon greeting, please understand how much this has meant to me and how it has reminded that I am loved. That’s not nothing. In the autumn, I hope to record some music for you, but for now I’ve got to focus on simpler things. Let’s not put on a show — for now. Thanks for your prayers.  

Jumping

22 March, 2021

My brother and I were never truly opposites. I was no Apollo to his Dionysius. Even so, it was my own Apollonian voice I would hear saying — as he climbed to the top of the chimney or peered into the apple crate full of fireworks he’d just lit — “Chris, no.”

When Christopher was 14 and I was 8, he learned to jump into the swimming pool from the second-story window of our house. It was no direct, vertical descent mind you. To reach the safety of the pool, he had first to clear several feet of roof overhang and then successfully sail over a flagstone patio. Yet, as he tumbled out into space and then a few breathless moments later entered the water with a huge splash, I remember how his eyes sparkled with exuberance and adrenaline. Once I tried jumping, but my descent was exuberance-free. Eyes clenched tight, I just wished it over. Naturally, I entirely missed the point, but of course I didn’t realise that at the time. For Chris, jumping gave him a few moments of bliss; he was in his own element shooting through outer space like a meteorite — exuberantly burning up.

Of course we all said that he’d burn out early – his thirst for adventure would one day be his downfall. That thirst would later morph into a thirst for sugar (something he never lost even after every tooth rotted out of his silly head), then a thirst for drugs (the scourge of my late childhood when his drug induced rampages terrorized the family). So, not only did my formative years convince me that my role was to beware of danger, it somehow became embedded in me that risk was a thing to be avoided. After all, I was the thoughtful one, the careful one, the “good boy”.

And so we became different in every way possible. Even our musical tastes diverged. While he followed Janis Joplin, I committed myself to Mozart and set out be a classical musician. Classical music may seem to fit the staid and safe narrative of this story, but I do distinctly remember the night the orchestra played Tchaikovsky’s Francesca Da Rimini Overture with such fury that something in me snapped. I let go of trying to play and just let go into being the music. For a few spectacular moments I became suspended high above the frantic orchestra gazing down at my own frenzied fingers doing what they’d trained themselves to do. In the wild rush of the music all around me, I became invincible and, like my thrill-seeking brother, I suddenly found myself playing purely for the thrill of the ride; riding that same adrenaline rush he so craved.

As Christopher aged, he did eventually quiet down, and he didn’t die young as was predicted, and not in some thrilling explosive demise as was also conjectured. He passed away quietly at the hospice he’d checked into. To wait for his turn. On that last, sunny autumn afternoon at the hospice — his last day still tethered to planet Earth — I wonder if he hoped that death, when it came, would maybe present itself like one of those adrenaline rushes he once craved. I hope so.

When my time comes, God help me if all I can think of is how to stay safe, how to lessen the impact, how to manage everything. If that happens, I’ll for sure have missed the point. Maybe it’s time I seize onto the feeling of what it’s like to be that alive. Like I’m free-falling in space many miles above a distant blue swimming pool. Imagine if all I can think is, “Man, what a rush this is!”

A non-jumping day, my brother repairing the patio (1980s)

(Not So) Small Victories

9 December, 2020

December 9 marks an anniversary worth commemorating for however many years I have left on this planet: One year ago today, my right leg fell off.

Perhaps I exaggerate but from the standpoint of walkability it was, like, effectively gone. There was I on my way to a session to record Jeffrey Ryan’s Arbutus when I felt a sudden crunch from somewhere deep within the hip socket, and in that instant the short distance from escalator to approaching Skytrain seemed inestimably far. But like a pro, I made my way to the studio on my one good leg.

Say what you like about suffering makes…art…better, I do remember composer Jeffrey Ryan saying—as he piled me into the waiting taxi bound for home—that it had gone…very…well.

Daniel of course nearly fainted with horror at the sight of me, but I smiled a “Other than that Mrs. Lincoln, how did you like the play?” grin of denial about the whole leg affair and demanded we pull out the champagne to celebrate the victory.

Little did my besotted brain realize at the time how this little mishap with the right leg would catapult from fender-bender into the car wreck that is cancer. But then, who imagined last December, as they drained magnums of bubbly and extolled over their resolutions, what a 365-car pile up 2020 would turn out to be? We were so innocent back then.

Jason 20 Mar 20 St. Paul's Hospital for MRI scan.
20 March 2020, Jason braves the corridors of St. Paul’s Hospital in search of an MRI machine.

Fast forward half a year later. Half a year of radiation, chemotherapy, crutches, walkers, canes, intravenous zolodronic acid treatments, Hickman line insertions, blood clots, blood thinners, shingles, tooth extractions, a stem cell transplant, the loss of family (my mother) and friends (my dear friend Caryn) to cancer, all etched in high relief against the backdrop of Covid-19; all of these things that made that day in late September when my beard and moustache floated away like milkweed in an autumn wind seem like a minor inconvenience. As indeed it was.

It was recently pointed out to me by someone with a more balanced view of Facebook than I possess that I am remiss in not providing an update of my cancer journey. In response, I’m happy to report that most of the tribulations I describe above are history and that I am on the road to recovery. Apart from some pain killers (for residual shingles-related neuropathic pain), and a blood thinner (for that blood clot that’s taking its sweet time to dissipate) I’m not currently on any treatment, although the nature of Multiple Myeloma (it’s treatable, but not curable) means that I will be going on to a programme of mild chemotherapy for the next couple of years.

I have heard that some people experience a health crisis in their early senior years (I’m 61 now so I think I qualify) but then once that’s dealt with, enjoy several more decades of excellent health. God willing, and some investment in a naturopath to keep me in tip-top shape, I’m working to stave off the return of the beast for many, many years to come. That’s my plan and I’m sticking to it.

Courage, a thin line

31 August, 2020

Jason at Spanish Banks

Today marks the beginning of a new phase in my Multiple Myeloma journey. Multiple Myeloma is a form of blood cancer that affects blood production in the bone marrow, most notably the right hip and a couple of vertebrae down my back.

I finished chemotherapy a couple of weeks ago — a process I more or less powered through with few negative effects. This next leg of the journey is designed to wipe out the remainder of the cancer and give me a spanking new immune system.

When What
23–31 August

I’m receiving Grastofil injections to coax stem cells out of the bone marrow and into the bloodstream where they can be collected. In the old days they used to perform a bone marrow biopsy, but now they give Grastofil injections. These mobilize blood stem cells out of the bone marrow and into the bloodstream where they can be collected more easily.
1–2 September

Once all my little stem cells are mobilized, I’ll be hooked up to a gizmo similar to a transfusion machine, which filters out stem cells from the blood where they can be put into cold storage (for up to seven years I’m told, so I can perform a reboot if I want and install a younger me).
4–5 September

I’m also going to have a Hickman Line (a type of catheter) inserted into my chest to facilitate injections and IV insertions over the coming weeks. To insert the Hickman Line, doctors make an incision in my chest into which they insert a tube that makes its way down my jugular vein to “just above my heart”. I’m a little freaked out about this procedure, but I’ve been told it’s really no big deal. Still, the Hickman Line will protrude from my chest for a month, during which I must not accidently whack the tubes sticking out of my chest or open one of the little plastic shut valves and allow my “blood from gush out”.
8 September

With all this gear in place, I’ll be ready to receive a super blast of chemo down the Hickman Line to destroy all stem cells — the good and the bad. I’m told this may also destroy all body hair so good-bye covid hairdo and that lovely lockdown moustache I’ve been working on.

More importantly, zapping those stem cells performs a factory reset on my immune system, requiring extreme vigilance against viruses or infections. My childhood inoculations also get tossed so at some point — once my new immune has rebuilt itself a bit (say, to that of a three-month-year-old) — I’ll need to be re-inoculated for chicken pox, measles, and polio, and so forth.
9 September

The day after the chemo blast, the doctors will transplant those preserved stem cells back into me. If all goes well, I’ll be good to go (less that all-important immune system) after a few weeks of recovery.

Recently I listened to a Simon Sinek talk in which he described courage as something that requires a community (it’s not solely an individual’s responsibility). Sinek aims his talks primarily at business leaders, but what he said rings true for me when I think about how my sense of courage has increased each time I receive a call, a text, a prayer, or a delivery of cookies. Having a community cheering me on has helped me power through whatever pain and difficulty the treatments have presented. And for that, I’m deeply grateful.

Covid-19 — facing the music

26 June, 2020

Facing the music

Today marks the halfway point in my chemotherapy — a small point of celebration in a world awaiting a second wave of Covid-19. In fact, my diagnosis goes back almost exactly to that same unlucky Friday the 13th in March when Vancouver joined the rest of the world by grinding to a halt.

And while most of us succumbed to binge watching Netflix and online shopping (and a smaller number actually contracted coronavirus or found themselves on the front line of the disease), I played hide n’ seek with the Pandemic while attending the cancer clinic for treatments (and occasional trips to the hospital’s emergency room).

It was also during this time that my mother, who was quarantined in an assisted living residence in Toronto, put herself on end-of-life care (in part so she’d be allowed to receive family during Covid-19). It’s hard to put a carefree spin on cancer, but I tried to assure her saying I had “good news” and “bad news”. The good news was that it’s treatable and I didn’t need to say the bad news given our family propensity for cancer. Despite my attempts to make light, she fretted in her final days. On Easter Morning she passed away. Her last words to me were “I’m sorry” which I took to mean, “I’m sorry I can’t be here for you while you go through cancer.”

During this tumultuous time, I naïvely looked forward to some spare time for music and writing. But that’s been nearly impossible as my health dipped repeatedly below the level that could, for example, allow me to sit at a desk or find the air capacity to puff into my clarinet or tárogató. Even so, I was able to take an online fiction writing course and record some tracks on my penny whistle (ya gotta start where you’re at).