Postponing
I go in for my preflight checks. Ocrevus is scheduled for tomorrow and I’ve left it as late as I can to get my blood tests done. These bloods are critical and we want to give my body as much time as possible for it to recover my lymphocytes to the minimum safe level to begin the next round of treatment. I’m already nervous. My immune system is about as capable of personal defence as a polar bear is of flying a harrier jump jet. If my lymphocytes are anywhere near the desired level I’ll eat my headphones.
Normal lymphocyte levels begin at 1.5. Anything above 1.5 is considered normal, and anything below 1.5 is… let’s say… less than ideal.
As it has been explained to me, generally Ocrevus should be taken when the lymphocyte levels are no less than 1.0. Anything less than 1.0 is what we might consider hair-raising, the kind of danger we have to laugh loudly at to make it at all psychologically survivable.
Last time we took Ocrevus when the lymphocytes were only at 0.8. Anything below 0.8 and that part of the immune system trying to stop an infection is I assume little more than a fart trying to stop a hurricane.
We were willing to tolerate taking Ocrevus when my lymphocytes were at 0.5. Lymphocytes below 0.5 are considered actively worrying. People start talking about prophylactic antivirals, which I think is akin to activating the airbags because you’re almost certain you’re about to crash.
My blood test shows my lymphocytes are at 0.4. At that level the police force of my body are all drunk at the local tavern and we essentially have to hope that no one needs arresting because the only thing protecting and serving tonight is the bartender.
The team messages me that it would be too dangerous to proceed. We need to delay.
We’ve been here before. I can feel the shield starting to wane. I mean I know I can’t see or feel the shield, really, but my fear tells me that we’re in danger. The irony, of course, is that low lymphocytes indicates that the shield is likely to remain stronger for longer. But I’m not betting my life on it.
Except I am.
If I take Ocrevus and have no lymphocytes then one of the disastrous opportunistic infections that they keep under control could get rowdy and I could quite easily get very sick. If I don’t take Ocrevus then eventually the shield will fail, the monster will find me, and it will tear chunks out of my nervous system.
So here we are again, walking the tightrope between the shield failing and me getting a serious infection.
Yet on the horizon BTK inhibitors, that don’t weaken the immune system but otherwise offer the same kind of shield as Ocrevus, have passed phase 2 trials. I just need to stay safe long enough to step onto the most modern treatment.
The worst part of it is that I’m doing everything right. I’m working out pushing in my wheelchair 5k every day, and 8k on a day where I really push myself. I’m taking my medications, I’m sleeping well, I’m eating right, I’m hydrated and I don’t drink alcohol or caffeine, I’ve got my self-catheterisation down to a fine sterilised art and I’ve not had an infection in well over two years. I ask the team what more I can do and they tell me that I have no power here. There is nothing I can do. I just need to stay as mentally well as I can, knowing that, as is always the case when you’re disabled…