I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.
In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.
While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.
So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.
Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.
My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends). My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic. I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).
So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!
Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.
I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).