Inside every person there are two wolves, and mine are both trying to eat me
It is a bad week this week. I had Covid, and experienced all the fun of navigating the corridor to my bathroom like an inescapable fairground ride. Then my MRI results came in. We knew that the results were going to be bad, I had relapsed since my last MRI and we were expecting my brain and spinal cord to reflect the battleground they have become.
But the news was really bad.
I have multiple new lesions in my brain’s right hemisphere, having likely felt left out of previous relapses and seeking compensation, and 2 or 3 new lesions in my already taxed cervical spine. Trouble.
The doctors in the multidisciplinary team now consider the situation to be in the ‘oh crap’ category of trouble, just above ‘that doesn’t look good’ and barely below ‘whoa, Hank, come and look at this’.
The upshot is that the multidisciplinary team now considers the risk high enough to go to DEFCON 1. I thought we were already at DEFCON 1 a couple of DEFCONs ago so I’m honestly surprised as the team whaps out its new strategy. The neurologist sits me down with the vibe of a low Oceans 11 bass line. It looks like we’re cooked and he just smiles knowingly and we get a flashback showing how this seeming disaster was just part of the plan all along. Ok so he wrote me a letter but in my mind he sat me down and he was young George Clooney and I’m allowed to hallucinate, ok, I have brain lesions.
The new approach that Danny Ocean describes is cool, in a way that I’m familiar with from another Matt Damon film, The Martian; the book is outstanding and Andy Weir is a genius at situations that look basically unsurvivable except for some daring science. There’s a moment in the film where Matt Damon hears of the new incredibly risky plan and types a message to the team ‘are you fucking kidding me?’ and the team can’t work out whether he’s saying ‘are you fucking kidding me…?’ with all the incredulous terror the plan deserved or ‘are you fucking kidding me??!’ with all the excitement of an extreme fantasy base jumper getting the opportunity to leap headfirst into Mount Doom.
This is very much that situation.
The original plan was to avoid Ocrevus because the team considered it too risky in my personal circumstances. Then the plan changed to Ocrevus but to make sure we only stepped further into Ocrevus when the blood work identified it was safe enough to do so. Now the plan is to continue with Ocrevus even when things are pretty risky, just as long as a subtest shows things aren’t totally catastrophically risky… or something to that effect.
What are the risks you ask? Don’t ask. The likelier risks are more infections and more severe infections and longer lasting infections. The less likely are more serious and opportunistic infections. The least likely is a name I shall not utter here, the ultimate fear of all who are immunosuppressed, and we’re just going to call him Dave the Destroyer. In short if Dave finds you he makes the MS monster look like an absolute kitten by comparison. We. Very much. Do not want Dave to find us.
But the MS monster can make us blind, or paralysed, or in permanent pain, or a million other nightmares it can visit upon us. And if one thing is virtually certain it is that this monster is right at the door. So our risky venture is to get shields up before the monster finds us while knowing that the shields will also increase the chance that Dave or one of his friends find us. That’s the plan on the table. And the question from the doc is…
‘Do we go for the shields?’
Honestly it’s a question I really lament. Like how am I supposed to make a critical decision weighing the various risks dispassionately when it’s my ass on the line?! And what do I think we should do?? If we were in a spaceship and there were warning alarms going off and NASA has some daring escape plan that might just work but could kill all the astronauts and juuuust before making the final decision the Director calls up Jeff from Warminster Local Authority Accounting department to get his take we’d all question what the barista put in her coffee that morning. But sure, ask me, I’m great at high stakes decisions, I played a 5 dollar hand of blackjack in Vegas once.
Every eventuality flashes before my eyes but there is clearly one right option, though I’m all too aware of the risks it entails. In my head I’m the wild captain, the roguish corsair, tipping my hat while recklessly but somehow charmingly throwing all caution to the wind to heroically beat the odds. In reality I’m just bone deep shit scared when I say…