On August 30, 2017, one year ago today, I received stem cells from a world donor who was found to be a perfect match. Finding a perfect match was extremely fortunate as many people have to settle for half-matches or worse, which decreases the likelihood of successful grafting in your body. In May, 2017, I had been diagnosed with Myelodysplastic Syndrome (MDS), which is a cancer of the bone marrow, and after a month of “lighter” chemo treatments it had expedited to AML (leukemia) and I had to be admitted to hospital.
Today is a day for celebration and a day for reflection. I celebrate because the hard part is over and I have come out of it happy and healthy. I reflect because I honestly haven’t done so. As soon as I left the hospital I put it behind me. I’d think about or discuss it as “that time I was in the hospital” but my mind would gloss over and ignore what went on in there and all the things I went through. Like a locked compartment in my brain. To think about it just causes me to tear up so the easy solution is to not think about it.
Last year I told everyone that when (not if) I made it to one year post-transplant, I would disclose the survival rate that my hematology doctor gave me. Before I could sign off on receiving the stem cell transplant, I had to acknowledge that I was given the three-year survival rate of a man in my age group with my symptoms that were given the same stem cell transplant. So here I am and here it is. It was 40%. I was given that number and then had papers put in front of me that I needed to sign before they would make preparations. Forty percent three-year survival rate after this transplant. And I signed it because non-treatment would mean certain death, likely within a year. It was too late to seriously consider homeopathic or other solutions (I had already jumped on those, as I’m a big believer in trying everything if it can’t make things worse – but wasn’t enough time to properly see any through and comment on if they helped).
So then I was admitted to hospital in July for nearly four weeks. To start off – I had a Hickman line put in my chest. This is a tube that leads to a main ventricle going to my heart. This way, instead of getting 100 needles per day, they can hook it up to me directly. I actually got my stem cells through this tube. The tube remained hanging from my chest until New Year’s Eve.
Most of the chemo happened in the first week. But it was a rough chemo – the kind you hear about with the vomiting, etc. But I was one of the stronger patients who could actually get back to eating after a few days. I was a picky eater with what I could (or wanted to) hold down, but I have family who supported me and ran around the city getting whatever I asked for. On August 19 I was released from hospital for five days, but on the 19th I had been given a lumbar puncture for spinal fluid and it resulted in a massive neck ache for three of those five days, kind of sucking the fun out of my brief home time. But I did what I could to spend time with my kids because the next phase meant that I couldn’t see them.
The stem cells…
I was back in the hospital on August 24, after a “last dinner” with the wife and kids at a restaurant. Then it was a different chemo per day on the 25th – 28th. After that, on the 29th, was full radiation. This killed everything in my marrow both good and cancerous, and left me with zero immunity. And on August 30 I was reborn. With no immunity to fight these “invading” stem cells, the hope was that it would be accepted into my body and that within two weeks it would become new marrow and start creating healthy blood. This was helped along by different doses of different chemos, just making sure that none of my body’s defenses would fight or hinder the process. I actually maintained a decent appetite, one of the better cases for sure. Although around Day 10 I had sores in my mouth that everyone gets from one of the chemos or the radiation (I forget which) that forced me to eat pretty much through a straw. But this only lasted four days (most people this can last a week to 10 days so again – lucky).
I had a little exercise bike and was also encouraged to walk around the isolated ward (with a mask). I was able to go once around by Day 10, and then each day I would try to add to that – twice, three times… My entire stay in the hospital the nurses (one and all – amazing amazing amazing people and unbelievably patient and helpful and how can they stay so cheerful? Wow) took my vitals every two hours (every hour the first while after the transplant), even overnight. I remember over two dozen blood transfusions. I remember working on the Fantasy Guide here and there on the laptop when I was able, but had relied on my team for updates and helping out with the many customer issues that cropped up – specifically Mario Prata, Mike Clifford, Ian Gooding, Neil Parker, Mike Hiridjee, Cam Robinson and Riasat Al Jamil. I remember having to drag the damn IV pole around on my walks, or into the bathroom. I remember binge-watching Justified, and all the Mission Impossible movies, and watching Suits and Ozark when my wife visited. And Family Guy. I remember the KFC Zinger, Dominos pizza, and McDonalds nuggets – cravings of things during times when the stomach was delicate, and these greasy items actually worked!
On September 19 I was released from hospital. Possibly in record time, but certainly close to it. But on September 18 the isolation order was lifted and you know what I did? I had my wife bring the kids. At the time I had just found out that I was probably going to be released the next day and would see the kids anyway, but I hadn’t seen them in a few weeks and I wasn’t going to wait another day. We just hung out in the visitor’s room and played a couple of games, ate ice cream and then we all gathered to work on a big puzzle as a family. I remember on the rooftop patio raising my six-year-old Mackenzie to see over the rail down below – and I remember not having the strength to similarly lift my eight-year-old Avery to do the same (a reminder of how weak I was).
The next day I did indeed get released. I would never forget the hugs the kids gave me when they got off the bus that afternoon. I remember trying so hard to get home in time to do that and just making it by mere minutes.
From that point I would go to Princess Margaret for twice weekly checkups. My immunity was like that of a newborn so I needed to sterilize a lot and avoid crowds. Getting sick could mean breaking the graft and losing my donor’s cells, which would mean either starting all over again or dying. I was able to sit at the computer for as long as an hour. I tried working out right away, starting with 20 sit-ups and 10 minutes on the treadmill. I remember my stomach muscles killing me the next day so after learning that lesson, I started with five sit-ups and five minutes on the treadmill! And then I would add one sit-up each day and one minute on the treadmill each week.
But then I had a setback. The Epstein-Barr Virus is a virus that everyone has and easily fights it off. But I got it in November and couldn’t fight it. I was exhausted all day, couldn’t do any work and would miss workouts after I had built them up to 40 sit-ups and 15 minutes on the treadmill. So I was given a form of chemo every Friday for three weeks until it was gone. That was it for the setbacks. In mid-December I was back working out, had regained 10 pounds (I had lost 25) and started getting my hair back. By February I was down to every two weeks for hospital checks, and by March I was doing full workouts and at monthly hospital checks (where I am at today).
Today I can go to the movies. I still need to avoid crowds when I can and getting sick is still not a good idea, of course. But I’m out of the red zone and into more of a yellow zone. I feel good and have no restrictions in terms of my abilities. Today I savor more in life, show more patience, and hug my children even more than before.
I can also, if the donor is willing, discover the name and location of the person who saved my life. And I will be thanking that person will all my heart.
A big thank you to my wife, who was steadfast by my side, and took care of everything at the house with the kids at the same time. And who made me meals to whatever I could handle, or bought them for me if that was what it took. My parents and sisters, especially Brandy who practically forced her way into visits whether I wanted them or not (turns out I did) – and made sure my wife had relief. My sister-in-law who worked near PMH and so she came to see me every day and also ran around buying whatever craving I had. (I remember she once took me up to the rooftop patio to eat food that I requested and she bought. I remember fainting there and she had to round up help and get me into a wheelchair and wheel me back to my room. Good times.) Thank you to my in-laws, my dad and my uncle who came over and cleaned up the gardens, the car, the deck and yard while I was out of commission for the summer.
And finally, I want to thank my friends and my readers, often one and the same. Your positive messages on social media and on my website had an unbelievable impact, often making me cry after feeling such kindness. Throughout my hospital stay I would go back and read them, drawing inspiration from the ones who have gone through similar or know somebody who has.
Here’s to continued positive news over the next year and beyond. Feeling blessed and lucky.