AML, Part II

Posted 14 Jul 2018 · revision history

It’s been about eight weeks since I was diagnosed with leukemia. I spent most of the last month undergoing the first chemotherapy cycle, and now, after a ten-day respite at home, I’m back in the hospital for a second cycle.

There’s good news to share. Test results show that the first cycle was a success, resulting in a complete remission of cancer cells in my bone marrow. This is a big relief because it means my body responds well to the treatment. Some are not so lucky.

Now that I’m in remission, two steps remain in the treatment protocol: the chemo cycle I’m starting now, and a bone marrow transplant afterward. The challenge, though, is in finding a suitable bone marrow donor. There’s a one-in-a-million chance that any given donor will be a match, and that’s why the search is done globally. The search itself takes time, and once a donor is found it takes time to get and ship the actual donation. If a donor is not found quickly, I’ll undergo additional chemo cycles while waiting. If no donor is found at all, yet more chemo cycles are the fallback plan. In the best case scenario, I’ll be finished with the treatment plan in a couple months; otherwise it could take four or five.

You might wonder what chemotherapy is like. Of course it differs from case to case, but having had cancer twice now, I’ve found certain side effects in common, and have developed certain ways of dealing with them.

The big side effects are nausea and lack of appetite. Hospital food isn’t that appealing to begin with, but with chemo in the mix, it can be downright revolting. I’ve found it helps to force myself to eat at least a couple bites. Nausea is worse on an empty stomach, so anything you can do to get food in there is a good thing.

Another issue is depression. I’m not someone who suffers from it regularly, but toward the end of every chemo cycle I’ve been through, I’ve had a terrible few days where whatever I do seems empty and futile. This is a strange phenomenon, because while I know it’s a side effect that will pass, that knowledge makes no difference. The nature of depression is that you actually believe the negative thoughts you’re having, and it seems there’s nothing you can do about it.

Truth be told, though, I had a secret weapon during the last cycle in counteracting all of these side effects: cannabis. I had cannabis-infused coconut oil on hand at all times, and would use it as necessary. It neutralized my nausea, brought back my appetite and lifted my spirits when I needed it most. Cannabis remains prohibited in Austria and therefore my doctors could not prescribe or administer it to me, but I informed them that I was taking it, and they gave it their tacit approval.

Cannabis is known to be the only compound reliable at eliminating nausea and restoring appetite in cancer patients and it’s outrageous to withhold it from them for baseless political reasons. I often felt guilty walking around the hospital ward, feeling relatively well while watching other patients in my same condition suffer needlessly. Of course, cannabis is not a panacea: I still had horrible, bedridden days racked with fever and still lost 20 pounds, but I was much better off with it than without. I look forward to a day when cancer patients can benefit from it without having to bootleg it, too.

Overall, my treatment has gone very well so far, and I’m optimistic about how the remainder will play out. Thanks to all the friends and colleagues that have reached out over the last months with well wishes. I feel loved.

People often ask if there’s anything they can do to help. There is. Consider becoming a bone marrow donor. It’s easy to do, and will increase the chances that others in my situation can get the transplant they need. Indeed, I was really touched to see this tweet from my friend:

Thanks, Ben—I hadn’t considered suggesting this to people until I saw this.

I’ll post another update when this cycle is complete. Cheers, everyone.