Just under a year ago, I had my stem cell transplant. A couple weeks ago, I ran a marathon in PEI. Running the marathon put me in some pretty limited company.
Stem cell transplants aren’t exactly new. They are more commonly used to treat cancer patients. There are a few cancer patients that have received stem cel transplants and gone on to run a marathon less than a year later. It’s a different protocol, but it’s still a stem cell transplant. But to my knowledge, I’m the only MS patient to have done so.
A lot of that comes down to what MS does to the body. Followed by what the stem cell transplant protocol does to an MS patient.
Everyone is pretty aware that there is a lot of chemotherapy involved. But I don’t think they’re aware of how much or what it really does to you.
To say that you take a lot of chemo is an understatement. It’s necessary to eliminate your entire immune system. The treatment is most comparable to what a Leukemia or lymphoma patient would go through with a clear difference in the aim of the protocol.
In a cancer patient, the aim of the chemotherapy is obviously to kill the cancer. So most of the time, some natural immune system remains in place for the patient to recover naturally from the chemotherapy after their stem cell transplant.
In the Ottawa protocol for the stem cell transplant which has been the most successful, the immune system is completely removed. You have no white count and lots of other blood parts drop off too. Most notably, your platelets. This means that you can basically bleed out and die at any time
I had two platelet transfusions myself. Just to make sure that I had enough platelets that a paper cut wasn’t going to be my demise.
Next, it’s important to realize what chemotherapy does to the brain at those levels. It actually shrinks the brain. So in addition to the regular and anticipated chemo brain, there can be some fairly severe emotional and cognitive impairment that occurs. Particularly in the first few months after a transplant. With my transplant being in November, by mid December the brain atrophy was noticeable. By mid January, it was unbearable. It doesn’t hurt. But it is very frustrating and depressing and you do start to wonder if you’re ever going to be normal again.
You also have follow on effects of the chemo. In that same time that my brain was shrinking, I was living on antinauseant medication and it went everywhere with me I could not function without it.
Slowly though, things start to improve. The nausea eventually fades. And your brain stops shrinking. So you’re not feeling sick all the time, your mood stabilizes and you start to get your cognitive abilities back.
But those cognitive abilities are going to take three years to normalize. For the fire time tonight I realized that I am listening to something clearly while I’m writing this. Something I couldn’t do before.
All of this healing takes a lot of time. And it’s not always consistent. It’s in fits and starts. And that can make it really frustrating to deal with.
Even pushing myself as much as I do physically, it’s hard to deal with. I spend weeks working hard with no real progress. Only to see huge jumps later. And then plateau again for no real reason.
In other words, even with a lot of hard work, the recovery is not linear in nature. And you have to be very patient and have a lot of faith that you’re doing the right thing even when you work hard only to feel worse for a bit.
Right now, I’m less than a year into a healing process that will take at least three years and maybe more. The charting on recovery is not accurate enough at this point to really say.
And that’s a big reason why MS patients need so much support. Even the best treatments in the world under the best circumstances are incredibly taxing and create so much uncertainty. That uncertainty expands to every aspect of their life. From the obvious work limitations to the expanded dependence on others.
There’s a lot of stress involved in the entire process. And this isn’t meant to dissuade anybody from looking at a stem cell transplant as an option for them. It’s more meant to make sure that future patients go in with their eyes wide open.
On that note, I’m still looking to provide support for Reeves Moore. Reeves is just entering the phase where his stem cells will be harvested.
Please consider donating to our go fund me campaign for Reeves.