Feb. 1, 2019 | By Johan Malkoski
I got the tap on the shoulder from the Gods of Suck in September of 2014. They said, “Hey guy, you’ve had it pretty good so far, enjoy cancer for a bit.”
I was kind of clueless that things were imploding inside of me until I went over the handlebars of my mountain bike trying to follow my son Milo through a 12-pack of double jumps out at Duthie Hill Park [west of Seattle]. I clipped the second jump, got pinned into a berm and knew I broke something.
I called my wife, Lisa, on the drive home and told her that I needed medical attention. She said, “How bad?” and I said, “Not that bad, maybe a rib or something.” So we thought we were saving some bucks by going to urgent care instead of the ER.
The doctor said I had a fractured rib. He thought that I should go to the ER because my spleen was enlarged and he couldn’t tell if I had internal bleeding.
So after a bunch of time in the ER, the doc comes out and says: Well you don’t have a fractured rib — you have four fractured ribs, a chipped scapula, an enlarged spleen and either leukemia or myelofibrosis.
Myelofibrosis: from diagnosis to transplant
After some testing it turns out that I had myelofibrosis: the type of bone marrow cancer that turns your blood-making bone marrow (myelo) into non–blood-making scar tissue (fibrosis). From there, your spleen or liver takes over producing your blood and a shitshow ends up going on in your body. If you don’t do something about it, it will progress into acute myeloid leukemia and then, game over.
I was stupid enough to listen to my 14-year-old tell me with confidence that he thought I could follow him through the 12-pack of jumps that I had no business being on. And that saved my life because I wasn’t showing any symptoms of the disease.
In October I was diagnosed, and my wife got me in at Seattle Cancer Care Alliance [Fred Hutch’s clinical-care partner] with Dr. Pam Becker, who specializes in this kind of disease.
There was a cure for myelofibrosis. But it required a stem cell/bone marrow transplant, which involves finding someone registered in the worldwide donor registry who matches up with all the markers that are needed for it to take, and for me to live.
I was at a snowboard event in Mammoth [Mammoth Mountain Ski Area, in California] during April of 2015 when I got a text from my wife that they found a perfect match for me from a 20-year-old dude in Germany.
Then in August they had to remove my spleen — because a normal spleen is about 6 ounces and mine was 12 pounds. After eight days in the hospital and a month of recovery, I was checked into the University of Washington Medical Center and admitted to the transplant floor.
Getting through transplant
I stayed there for 29 days.
I had six days of intensive chemotherapy that killed my immune system, platelets and red blood cells, meaning I had no way to fight infection, scab a cut or make energy for my body. A simple cold would have killed me, and if I cut myself on something I could have bled out because my body didn’t have the means to stop the bleeding.
On the eighth day in the hospital, a bag that looked like it was filled with watered-down tomato juice was hand-delivered from Germany, and I was infused with this selfless 20-year-old German man’s stem cells.
It took 100 days or so for my immune system, platelets and red blood cells to come back online. During that time, I had to take all kinds of drugs to keep me alive, and I had over 50 blood and platelet transfusions. On top of that, I lost 50 pounds. The worst part was that December 2015 was “the December to remember” as far as snowfall in the Northwest.
In January I was released from my transplant team and put back in care with my primary doctor. My blood type changed from B-positive to my donor’s type of O-negative, and my immune system is now his.
At that time I felt the need to self-prescribe snowboarding again. My doctors suggested that I would be shredding sometime in late February or March. Snowboarding was some of the best medicine I’ve ever gotten. It made me forget that I was sick, and it made me remember I was still me.
Finding inspiration in the ‘suck’ of cancer
Thinking back on it, cancer sucks. Straight up, it blows.
But looking back now, there were a lot of things that were inspirational.
What I went through was in no way, shape or form even close to the suck that people went through 60 years ago when stem cell transplants were first tried. Even four years ago, it was a different process. I think of all the people who died going through it in order for the doctors to learn what they know now — that is pretty inspiring.
The doctors and nurses in the hospital were so incredible. It’s crazy that someone would want to be in an environment like that every day, and have the enthusiasm for doing everything it takes to keep you alive, when a good portion of their patients die. While I was in the hospital, there were three dudes that I saw [who died]. These guys were in there getting transplants like I was. I don’t know their circumstances and how far along in their diseases they were. But it’s pretty heavy when you’re walking around your floor and you see that people in the room down the hall [have died]. Just the day before you looked in their room and things seemed OK.
My wife was pretty damn inspirational. I think it was harder for her to go through it than it was for me. For the most part, I was on drugs. But she got to see the destruction of me on a day-by-day basis and had to keep herself together and take care of the boys.
I was not only inspired but proud of how my company handled me being gone during the busy time of year when we make our money. Reps, in-house staff and even retailers all rolled with my punches and I’m very grateful for that. Having support from my partners financially took a huge burden out of what most people are worrying about when they should be focusing on their recovery.
Friends came by to visit me and made time fly. Everyone who would text, email, FaceTime, Skype, check in, make meals for the family, drive the boys to school, take them snowboarding and keep their world cancer-free were pretty inspirational.
One dude who was a casual friend would just show up unannounced and hang out with me. He hated being in hospitals because his wife had died from hitting a tree on the slopes a few years before. I asked him why he would come if he hated hospitals so much. He said that he knows how much it sucks being in them, so coming and distracting me from that was his mission. Bottom line: If you know someone who has something challenging that they’re going through, reach out to them.
‘The new me’
I'm three-plus years out of treatment, but I still go into the SCCA every three months for a tune-up and to keep tabs on my mellow graft-vs.-host disease. [Editor’s note: GVHD is a common side effect of transplant in which the transplanted donor immune cells attack the patient’s healthy tissues.] My wrists are pretty stiff, but that's about all.
I was super nervous about what I would be like after the treatment. I kept reading about getting used to “the new you.” But looking back now, I've always been getting used to the new me. Every time I injure myself snowboarding, biking or surfing, I have to get used to the new me.
I kept a full blog of my time of dealing with myelofibrosis if you want to see my journey through.