7, 6, 5, 4, 3, 2, 1… We have countdowns to many events in our lives; Graduation, moving, even counting down the seconds until a rocket ship blasts off into space! You get caught up in the excitement, the buzz, the anticipation of celebrating that milestone! And rightfully so, those are all things to be celebrated! My current countdown is seven; seven days until I start my first treatment for MS.
When I spoke with my neurologist last Spring (before I was officially diagnosed), he mentioned I should look into treatment options as he thought we might need to start a Disease Modifying Treatment (DMT) within the year. In the meantime, I was given a list of medications to research to outweigh the pros and cons of each option (classic list making, right?). By Fall, my symptoms were worsening again and my MRI showed more lesion development. So, at my next appointment (virtual because, yay covid!), we decided on a medication called Ocrevus. Ocrevus is an IV infusion you receive every six months for active relapsing remitting MS. Without getting into the whole science of how, the intended point of this medication is to have fewer relapses and slow the disease progression. Timeline check: At this point, it had been one year since the onset of symptoms, I’ve had a few MRIs and multiple other doctor’s appointments to get to the point where I was officially diagnosed me with MS and we decided on a treatment. That’s a long road already - but let’s keep going! OK, so we’ve decided on Ocrevus… now we need to prepare! Cue the flu shot, TB skin test, blood work (12 vials), blood work again (8 vials), enrolling in the Ocrevus patient liaison program (aka Compass), sign this form, sign that form and contact insurance (x1642 times because you know… insurance). After all that, almost a year and a half from my legs first going numb, WE HAVE AN INFUSION DATE! A new countdown…. 7 days left! Just like a birthday, moving and space launch countdowns, there is a date to look forward to! What a long road - FINALLY!
Wait… February 4th is coming up so soon! Is this happening? Like, for real? No one has jumped out to yell that I’ve been pranked so I guess this means I actually have MS huh? The reality of the situation and the feelings I’ve been keeping at bay are gleaming at me in the form a looming date in my calendar. Ok, suddenly this countdown isn’t so fun - Having an infusion date means this disease is real. What side effects will I be dealing with from this medication? Will my throat close up during my infusion like some other patient experiences I’ve read about? Will I get that terrible headache people keep mentioning? Will the brain fog compete with the full body buzz thanks to the Benadryl and steroids I get on treatment day? Counting down to your graduation means you’re leaving your fun college years behind. Counting down to a move means you’re leaving a hometown behind. Even a countdown to a rocket launch means astronauts are leaving families and friends in their wake for an extended period of time. Ok - have we had our Debbie Downer moment?! Everyone good? Great… buck up, put your big girl pants on and move on! Yes, you will definitely miss your family when you travel to space but guess what… you get to go to space! How cool is that?! Moving away from your hometown? Yea that can be difficult but you get to experience a whole new city and explore a bunch of new restaurants! Graduating? Super scary to be out in the real world but you get to go out there and do what you love! So, yes… countdowns can be bittersweet; they are counting down to end of something but also the beginning of something new!
Do I really want to be counting down to my treatment? I can certainly think of many other things I would rather be counting down to! But it also means that hopefully any progression will slow down, that my symptoms can start to relieve themselves and prevent any new ones from starting up! Don’t get me wrong, I’m still a mixed bag of emotions about all of this but I’m trying to find the silver lining! Even if it’s the thinnest lining! So, let’s countdown to new challenges, new experiences and new beginnings! 7, 6, 5, 4, 3, 2, 1…