Long Overdue Update (Hint: Still Alive!)

This one was a long time coming. Truth is, I nearly died – and reining in my emotions enough to put it all into words has been harder than I expected.

As noted in the last post on February 9, 2024, I had a new date for the stem-cell transplant of March 5.

Well, that didn’t happen.

The Transplant Roller Coaster

I’m sure you can imagine the wave of fear that I felt when I was told it was canceled again. These things didn’t happen with my first transplant – I got the date, and got it done. No rescheduling involved. But my fears this time were temporary, as the donor just had to reschedule. The logistics involved are mind-boggling. The donor’s schedule, their hospital’s schedule, my hospital’s schedule, room availability – everything has to come together and I need the stem cells within a day or two of them being drawn!

The new date was March 13, which meant admission March 8. Unlike with the first transplant, this one did not require radiation. Cancer research is working, I can’t stress that enough. The differences between 2017 treatment and 2024 is massive. Easier bone-marrow biopsies (I keep repeating this, but it’s a pretty big deal – the ones in 2017 were super painful, but not so much anymore). Easier chemotherapy. No radiation.

The stem cells arrived in the late afternoon of March 13, and as before, it went smoothly—about forty minutes to empty the bag. I remember a little about that day, and the next few days are a blur. I see that I posted the “Alive” video on Facebook on March 17, which is the anthem for my battle. On March 17 I remember my sister-in-law and brother-in-law bringing my daughter Avery to the hospital. My wife and other daughter were in the United States for a soccer tournament. I remember Jai bringing a non-alcoholic beer and some green food coloring and I got to have my traditional green beer.

And that’s it.

The Blur & The Crash

That’s all I remember from the next three weeks. I know I sent friends some texts. I know I was panicky on March 31 at two or three in the morning. I had called my wife to get me out of there. I think I thought that the staff was out to get me, and I wanted to share my escape plan. When my wife didn’t answer, I called my daughter Avery. Woke her up, likely freaked her out. I called my sister-in-law. While I was talking to her, likely not making any sense, my wife called.

A few hours later, they induced a coma.

I didn’t know I did any of this, and the story was shared with me months later. I looked up my phone records and it was confirmed – I made those calls!

I will explain what happened to me.

As noted in another post, I was in the hospital for pneumonia in November where I stayed for a little over a month. I was released, and went home to spend Christmas with the family. I returned to the hospital often for tests (weekly) and chemotherapy. However, what we didn’t know was that some of the bacteria from the pneumonia was on the Hickman line!

My immunity was wiped down to zero by the chemo, in order for my body to accept the stem cells and not fight them. Well, the bacteria that remained – be it one cell or a few – had free rein. Nothing to stop it. The spread was slow at first – the occasional cough. But by late March the spread was faster. I know I was coughing up blood because it happened on a video my wife took about something else. I don’t remember this but it happened.

On March 28 I was moved to Mount Sinai Hospital into ICU. I don’t remember this, but I see texts I sent to my friends about my new digs. Things got worse until what was apparently paranoia. And on March 31 I couldn’t breathe properly. They tried to intubate me, but I was thrashing so much that they had to induce a coma.

My wife kept a journal on those days. I am still not ready to read it, but I will, and will post details at a later date. On April 2 – my 50^th birthday – I was still in a coma. Missed the whole damn milestone.

In 2017, I had the transplant on August 31 and was out of the hospital on September 19 – Day +19. In 2024, I had the transplant on March 13. Day +19 would be April 1. I was so looking forward to being out of the hospital for my 50^th. Well…not even close! Imagine a 50^th birthday landing naturally on a Saturday, and not even seeing it. Not seeing the day before, nor the day after. It still boggles my mind.

*

On April 3 it was Easter Sunday. They took my off the ventilator to test if I could breathe on my own. I could not. They put me back on the ventilator. The doctor advised Hemwanti that loved ones should come and say their goodbyes, because he wasn’t certain if I would come out of this. She shared this with my parents and sisters.

On April 5, hospital staff tried again. They removed me from the ventilator. This time I was able to breathe on my own and so they woke me from the coma. I could hear my wife and my sister Brandy speaking to nurses and doctors. Talking to me as I came out of it.

The Awakening

Everything was black nothingness until voices cut through—my wife, my sister, nurses. My eyelids felt glued shut. I tried to ask ‘What day is it?’ but only a rasp came out. I had no strength to do more than turn my head and wiggle fingers and toes. That’s it. I had no voice. When I tried to speak, I tried to ask for the date. I didn’t know if I was out for a day or a month. I was worried that, if you can believe it, I had missed releasing my Playoff Draft List! The nurse put her ear close to my lips as I hoarsely tried to say words. With effort I got them out well enough for her to understand.

“What is the date?” She asked. At that, my wife cut in. I couldn’t open my eyes just yet. Eyelids were too heavy.

“Let me tell him.” Hemwanti said. She wanted to break it to me gently that I had missed my 50^th birthday. But she didn’t know that my worry was for my business. “It is April fifth – I’m sorry that you missed your birthday, we’ll make it up, okay?”

The next few days were a blur, of course. Little things that I remember – I was getting food and liquids through tubes. I was starved! I remember asking often for food. The ‘Ensure’ that was directly poured into the tubes! That’s how they fed me! The Ensure hit my veins like ice water—cold, foreign, spreading through my arms and chest while I lay there helpless. My mouth was dry, and they had to in with a wet sponge and rub it around my gums and tongue. It was brutal. The inside of my mouth was peeling. I couldn’t drink water on my own because they couldn’t trust I wouldn’t choke.

I remember seeing things. Weird things. Alien creatures crawling up the walls and the only way to stop seeing it was to blink my eyes hard and reopen. Then the room would reset to the ICU room. I remember dreams – a constant, repeated dream of a world in which man created anthropomorphic objects, ‘Betty Boop style’, but then they became too intelligent and were sentenced for destruction. And I was working with them to save them. I feel like that dream was multiple nights and very vivid.

Or there was one in which my wife drove me down to New York for a wedding. I was still mostly an invalid. Her distant relatives became some sort of mafia, carried me into a convenience store to rob it. And then drove me back to the hospital – still unable to walk – where they had a shootout with a Chinese gang. Just weird, vivid stuff. I don’t really have dreams that I remember, but I remember a few crazy things those first few days out of a coma.

While in the coma, I imagined new technology for stem cell transplants. It involved getting on a roller coaster built within the hospital and riding it, and then by the time you reach the bottom, the transplant is complete. I remember getting on, going by a crowd of family who had gathered for all the other recipients on the ride. I remember my wife, and this gentleman who looked in his early fifties, sharp blue eyes and a silvery goatee beside my wife. I remember feeling he was…evil, for want of a better word. The coaster went by a wall-mounted TV playing Sportsnet and Sports Centre touting the start of the baseball season. It ended prematurely, but then it started up again. This could have been a minute later, or two days later, in which it started up again.

The next time it went around, it was the same thing. My wife, the ‘evil’ guy (more on him later), the Sports Centre saying the same thing. This time, as it rolled to a stop, I could hear my wife and my sister talking. Probably seeing me coming out of it, and then they start talking to me…

Speaking of Sportsnet, which played pretty much most of the day the first couple of weeks. Some of my memories of my thoughts of that time – man, I was quite delusional. They were talking about the renovations the Blue Jays did to their ballpark, and some rule changes. And I could create a car, park right there out front, and make it disappear, and go up and watch it. And in my deluded mind, there were changes to hockey games, and that teams eliminated from the playoffs didn’t have to play their games, so players didn’t get in 82 games. Or sometimes I thought that they only had to play five minutes of the third period of their games? Memory hazy on that one. Or that my niece, who was 17 at the time, was on the reserve list for Team Canada’s women’s hockey team?

The brain just wasn’t working right.

Sportsnet looped the same commercials endlessly. Subway jingles, Ozempic ads, and ‘Total Eclipse of the Heart’ still haunt me. I left the hospital still not even knowing what Ozempic was.

*

By Monday, April 8, I was awake and aware. Still having some delusions and seeing visions. That was the day of the eclipse. The nurses were talking about it, as were my wife and anyone who dropped by. It was a big deal. I do recall the window getting dark. But I couldn’t move, nor speak yet. But I saw thousands of interviews and newscasts on TV about it.

Rehab & Recovery

Again, my memory is still a blur throughout my stint in ICU. My wife probably has details in the journal she kept. I remember the first few nights they had a volunteer sit with me. Their job – make sure I didn’t die, I guess. It was hard to get their attention, being unable to raise my arm or speak. But not as hard as you think, as they glanced over at me a lot.

It was a process. Practicing raising my arm a little, holding it, and dropping it. Taking water from a sponge, a couple of drops at a time so I wouldn’t choke. The humiliation of being changed. Brutal.

Communicating was obviously difficult. And what’s more – my wife had difficulty understanding me from basic sounds. It became a bit of a joke, especially looking back at it. I would want something like water, and she would guess something that was way off, like “change the channel?” My sister, Brandy, and sister-in-law, Patti, were excellent at translating. So they would come closer and listen, and tell my wife what I wanted!

But where my wife was a true warrior 💪wasn’t in her translating skills – it was in battle. I wouldn’t want anyone else in my corner and you can only wish you had someone like that too. When I was struggling, she was chasing after doctors getting things done. She got me moved to ICU, running after a doctor to take a look at me, when I wasn’t his patient. And when I was in a coma, it was the long weekend. The main doctor was away. They surmised that “maybe it was the Hickman line” and “maybe he should go back on Septra”. But they didn’t want to make that call because the attending doctor was gone for the long weekend! She flagged down a different doctor, convinced him to come into the room – and got me on the medication, Septra, that saved my life. SHE saved my life. If she was a passive person, I would be dead. But one could not describe Hemwanti as passive!

Anyway, back to my recovery.

I had to hound them (hard to do when you couldn’t really speak) to get to start drinking water. The guy who came in to check in on me, a respirologist, was apparently the one to get the tubes into me and set me up with the ventilator. He was the guy with sharp blue eyes and a silvery goatee. The guy from the roller coaster! My wife introduced him to me and said he was a fan of DobberHockey. But I was still in my “visions” stage and I was honestly a little frightened! I tried to tell her not to trust him, but since I couldn’t speak I don’t know if the message got through. So funny, looking back on it. I’d really love to meet him again today, now that my head is clear.

I remember the first time I could raise my arm enough to hold a phone. It was April 20. I know this because I texted Patti to wish her a Happy Birthday. She told me she was so excited that she pulled the car over (she had been driving home) and called me to make sure I was the one who actually texted.

The exact dates for other events are probably noted in my wife’s journal, but I have a pretty good idea of how things went down. Once you get the arms working, they recover quickly. I was working the remote myself. I remember watching a Friends marathon for several evenings. I had to be strapped into a harness and lifted, planted into a chair where I would practice raising and dropping my legs. I could start drinking water – at first a little bit under supervision. Of course, with a straw.

The road to eating was a process – starting with Ensure. They would only give me two bottles a day through the tube. I had to beg to make it three! Then they took the tubes out and I was able to drink them myself. I’m not sure at what point they let me eat solid foods. But when I did, I vomited. A lot. I couldn’t swallow. Anything solid touching my throat caused the reaction. It wasn’t nausea, it was my throat! So I was on a soup diet.

I think around April 23 I was moved into Princess Margaret and out of ICU. Unsure exactly. But there, with two rehab specialists, I worked on walking with them and a walker. By May 8 I was walking with a cane. I had insisted on going home. The food there – I could control what I had, and when I had it. It would be better for my recovery. They fought me on this. By this point, I had been able to start talking to people if I used a high-pitched Mickey Mouse voice. Truth! It was the only way I could speak!

*

To be clear – Dr. Robert McDougall, who was the attending there (GREAT guy), was truly amazed at the speed of my recovery. Where I was in early April, versus where I was in early May – he couldn’t believe it. But they insisted I wasn’t ready. Could I even handle stairs? I agreed to test it out.

The answer was – no, I could not. I barely got up one. And that was a battle, with the cane, and a therapist by my side.

So I went from PMH to the Rehab Centre next door on May 10. I do know that date. I was determined, though, to get out in five days. At the RC, I had twice-daily long sessions. Working the stairs each day. By May 15 I could go up and down a flight of stairs with a cane. I insisted on release. They said I needed to stay for two weeks. I insisted on release. They released me on May 16. But I needed a visit from a physiotherapist every week for five weeks.

*

At home, the first two weeks I slept on the recliner. I had blankets, a pillow, pills – all at my side. I had a wife who worked from home ready to help, and two daughters. And it was great to once again be with my buddy Chewie.

I still couldn’t eat solid foods. My diet was soup, and I found that Chef-Boy-R-Dee lasagna worked as well. Even then, it was touch and go. So my weight continued to drop. I went into the hospital at 227 pounds. I left the hospital at 192. I bottomed out at 182.

By mid-June, I had ditched the cane at home, but still used it when I went out. I’m still talking like Mickey Mouse. Can you imagine yelling at your kids in that voice, telling them to stop fighting?

In late June, I’m still throwing up. In late May, my buddy Alex suggested ‘special’ gummies for helping my get food down. It worked. Taking a half gummy, letting it kick in, and then eating soup worked, and avoided vomiting.

*

Now an outpatient, I’m back to seeing Dr. Dennis Kim. He was my doctor from the last transplant. So real quick – after he diagnosed me with AML for the second time, I went back to Dr. Yee (second time) until a transplant could be coordinated. Then I was under the care of the transplant team. And now, nearly a full year later, I’ve circled back to Dr. Kim. He prescribed a steroid for the swallowing issue and – lo and behold – it worked. On July 1 I went a full day without throwing up. By July 2 I tried an egg sandwich. It worked. Boom, the gates opened and I started eating normal. Why wasn’t I prescribed that to begin with?

By mid-July I had ditched the cane altogether, and was starting to gain weight back, my appetite coming back to normal. I returned to my daughter Mackenzie’s soccer games, got to see my old friends the parents. The turnaround had begun!

I have seen a couple of shows and movies since then, watching the star come out of a coma and walk around. Pretty funny. As much as I enjoyed Dexter: Resurrection, I’m sorry but after 10 weeks in a coma he’s not going to jog up four flights of stairs after two weeks of rehab. I was just under one week in a coma, and six weeks later could barely get up one flight! And yes, Dexter was a peak physical condition going in, but I was in pretty good shape myself. Anyway, things like that stick out. The myth of television, eh?

Where I Am Today

I’m trying to cram about five blogs into one and it’s running super-long. So we’ll skip over the next 20 months or so and get to today.

I have scarring in my right lung at the top. That’s permanent, and I’ll probably never run hard on the treadmill again. I have a specialist at PMH for this (Dr. Lau). I am also compensating by spending 15-20 more minutes on the treadmill at a slower rate.

I developed fast-growing cataracts. I was warned this could be a side effect of the radiation in 2017 – they said in 8-10 years. Well, they were right. By December of 2024, I thought my vision was starting to go. By July, I had to stop driving. By the time I had cataract surgery in September of 2025, I would have to put my face right against a sign to read it! Cataract surgery was instant relief and completely life-changing. I got the other eye done a few weeks later.

I am still on Septra to this day. I still have a bit of sputum in my lungs, and I have another specialist monitoring this (Dr. Hosseini).

I have a couple of kidney indicators that are a little high. I may need to take meds for this, but as of yet I am not. I have a specialist monitoring this (Dr. Kitchlu).

The above three specialists are mostly video meetings, and occasionally they would schedule a test like an ultrasound, MRI or Pulmonary function, and then we would meet on video about those.

I have high liver counts due to the targeting therapy drug that I am on. It’s the price for being on this drug – as the purpose is to stop the mutation in my marrow from bringing the cancer back. These liver counts are slowly coming down, and being monitored.

I have extremely high ferritin (iron). I came out of the ICU with it at nearly 10,000. To put that in perspective, when Mackenzie had low iron that caused fainting spells in the summer, her ferritin was at 14. You want this over 40. So now I’m getting phlebotomies. A phlebotomy is when they take blood from you, lowering your iron. The risk here is that you’re also taking from your platelets and hemoglobin. So you have to take enough, and at enough frequency, to lower one without lowering the others too much. Now after a couple of these I didn’t want to keep driving into Toronto to go to PMH to have them, when there are hospitals in Durham. So I got into Lakeridge to see Dr. Vasanthamohan (Dr. V). He approved me, put me through all the tests as if I was a new patient. Now I feel like I’m doubly covered between Dr. V and Dr. Kim!

So now I’m getting phlebotomies every three weeks – 500 cc’s taken out. Last check, I was down to 1900 ferritin, which was several weeks and one phlebotomy ago. I have another one in a couple of weeks and then I see Dr. V again where I’ll have an update. But I’m hoping I get under 1000 ferritin and can stop having these phlebotomies!

The Positives

*

I’m alive after two years post-transplant #2. That alone is worth marking—even if quietly this time. Too much went sideways, but I’m still here: back on the treadmill (slower pace, longer sessions to work around the lung scarring), eating real food again, surrounded by specialists who catch problems before they spiral.

The other day an email popped up from PMH inviting me to their walk and fundraiser. Normally I’d just donate, but something clicked. A quick chat with Hemwanti, and we’re both in—me, her, and the girls. It’s on Sunday, June 21—Father’s Day. I’d love for you to join us on the walk or donate if you can. PMH saved my life twice. This is my small way of paying it forward for the next group of fighters. Link to my fundraising page is here.

Thanks for sticking with me through the long silence. I’m not going anywhere. Next update won’t take two years!

Stay safe out there. And keep fighting whatever you’re fighting.