Infusion day approaches
The wait for the infusion has been agonising. When we started Ocrevus we knew lymphopenia would be the challenge, and indeed it has been in the past. After Tecfidera lymphopenia delayed us starting Mavenclad, after the first round of Mavenclad lymphopenia meant we could not continue to the second dose, and after Ocrevus it has delayed us continuing.
The thing is that whenever we have had lymphopenia the delay in the next treatment has given the disease enough space to attack me, each one has resulted in a relapse without fail. 6 months after the first dose of Ocrevus we started the monthly blood tests and my lymphocytes were never where they needed to be. We waited and watched. Each blood test an opportunity missed for reinforcements to arrive and each delay led the enemy one step closer to my door.
Now the infusion date is approaching I'm getting nervous, knowing that an infection, an illness, even a cold, would mean a delay and would increase a chance of relapse, especially now. So we wait and hope.
3 days remain…
There’s a special kind of foreboding, lengthening shadows, that are hard to ignore in these times. I sit in meetings, read articles, respond to peer reviewers, and all the while there’s a part of me standing vigilant, noticing each quirk of Human error for the signs of relapse they could represent. I sit on my leg weirdly and it goes to sleep, I misspeak, I notice a twitch or a twinge, and the thought comes unbidden…
‘Is this it? Did we wait too long?’
Stay calm. Help is coming.
2 days remain…
I have waited 6 months for the infusion and you’d think that I could wait a few more days, but I can think of nothing else. I ponder the cookies I’ll take, how I’ll keep on top of my water consumption to keep my blood pressure up, what I’ll watch on my phone while we’re infusing. It’s a trepidatious kind of excitement, like waiting in line for a rollercoaster… ‘the infusion’ - the ride of your life.
I know I’m working tomorrow but my productivity is shot, I can’t even really concentrate on a book or a film, let alone a manuscript. Tonight we play Jackbox with friends, a super welcome distraction.
We wait. Be patient. Help is coming.
1 day remains…
Trepidation gives way to excitement and urgency. I can’t concentrate. I feel like a kid on Christmas eve, but Santa is wearing a stethoscope and my presents are full of monoclonal antibodies.
The MS is coming at me strong, with symptoms that are familiar but suddenly somewhat worse. In the community we call this the ‘crap gap’ where the immune system recovers well enough that it starts to cause problems again on the road to the next infusion. Many stumble upon the crap gap in month 5, I found mine on month 11, I guess I should count myself lucky.
I try to concentrate on my work, to edit videos, to distract myself. I sit, I walk, I scroll.
I’m jittery. I stop and breathe. Help is coming.
The day of the infusion…
We get up early, I need to leave about 7.30 to get to the infusion centre on time. I pee in a little tube in preparation, ready for their testing for subclinical infection, what was once known as occult. Oddly appropriate, the whole morning is like a religious preparation.
I get my cookies, my phone and headphones. I brush my hair, put it up, I pull on a T-shirt and jeans. My cane in hand and a bag on my back I Bilbo Baggins my way on my adventure.
We arrive at the infusion centre, do our final checks, the nurses are characteristically kind and jovial, the only people who can prescribe care.
And… somehow… we make it…
We make it. We make it!!! Finally, after 6 months of waiting and watching the shields wane, trying not to panic as the invisible monster that stalks its bounds searches for a weakness, praying to the fates that help will arrive before it finds me. And then almost casually the infusion goes smoothly and over 5 hours we raise our shields.
I met someone who has primary progressive MS, who was on her 11th dose, and she told me that she had not experienced progression at all since starting.
I really can’t imagine the possibility of being relapse free in the long term. I never dared to hope it might be possible, like the last wish of a child before bed.
But next month I celebrate 2 years since my last relapse, when until this point I had experienced relapses every 18 months… for 5 long years.
And today I find myself wondering… what if…
I permit myself a little look at the shields, now a source of reassurance rather than a source of fear. New weapons in this battle are being forged, BTK inhibitors, reverse vaccines, remyelination therapies even offer the hope of improvement, recovery. And now that Ocrevus has restored my shields, I’m one step closer to maybe one day slaying this monster for good.
Today and tomorrow I rest and celebrate, the infusion being quite taxing itself and the antihistamines and steroids that accompany it come with side effects that will a subside in time, a small price.
Then we get back to work. This monster isn’t going anywhere and when the shields wane again, or if it finds an unexpected gap in our defences…