I’m gearing up for my week before treatment. I’ll have to start taking prednisone. I started reading the booklets that come with the treatment. It’s all nicely organized in a binder with different booklets entitled stuff like: Before you start treatment and The weeks following treatment. Everything is laid out so carefully and precise. It goes over what to do to arrange for the treatment such as arranging rides and company and packing a bag of goodies. What to expect during the infusion is a big part of the booklet. It describes what the day will look like. I’ll arrive in the morning and there will 1-2 hours of IV corticosteroids to prepare me for the Lemtrada infusion. It describes it as sort of a helpful defence against any reactions during the infusions. Then it’s about 4 hours of the Lemtrada infusion in which I’ll be attached to the IV. And then approximately 1-2 hours of monitoring by the health care team. And then I can go home. It describes possible reactions and side effects like nausea or vomiting, rashes or hives. I read it aloud to Joey, pretending I was brave but we both know I was faking it. I read about being well rested, hydrated and to avoid germs during the first month. During which I’ll be off of work but it reminds me to not isolate myself but to be around friends and family for emotional support. I closed up the booklet and put the binder away. I felt like I couldn’t catch my breath, symptomatic of a panic attack coming on. I waved that fucker off for now.
I’m well aware of the positive aspects of what this treatment might hold for me. And I know I’m lucky to have been approved to receive it. I also know that the alternative is to risk losing my vision in one or both eyes. And yet, I don’t dread this treatment any less. I’m scared of the prednisone and how it will affect my body.
I’m scared of being nervous before hand and how it will make my stomach sick.
I’m scared of the night before the first infusion and the morning before I have to leave.
I’m scared of the first pin prick of the needle and watching the Lemtrada enter my body, foreign and unknown.
I’m scared of the discomfort I might face.
I’m scared of the nights during the treatment where Joey will have to worry that I’m okay and not experiencing any serious side effects.
I’m scared of what comes after the infusions have ended, the monthly blood work and staying home.
I’m scared that my absence will cause any unease for the kids in my class.
I’m scared that the treatment won’t make a difference and I’ll still relapse.
And beyond all the fear, and more than anything else, I’m so fucking angry that I’m afraid of all of these things. I’m pissed off that my natural reaction isn’t to look at the positive or hopeful side.
And I hate that at the end of the day, when the lights are off and I’m disconnected from my friends or family or Joey,
I’m left alone with the one constant in my life. That’s always been there. The anxiety. Now I can’t find any comfort in it. Like a cruel stranger that won’t leave you alone.
I just wish i could expel it from my life, like a breath I’ve been holding.
I’ve never wanted anything more.