When a new chapter begins in someone’s MS treatment, suddenly it’s not hard to come up with blog content anymore. Suddenly one’s life is full of things to think about, research, talk about, schedule, plan and carry out. All of the sudden your mind has something to wrestle that isn’t the same old bag of excrement that its been wrestling with for the last several months. All of the sudden there are things to do again.

It’s hard not to have a sense of false serenity thinking this new treatment could be IT. I mean, when I think about it, each treatment I’ve signed on for was supposed to be IT. Tysabri could have given me a deadly brain virus but it was supposed to be IT, so I signed up willingly for a mind-numbingly frightening potential outcome (um, death?) for the outside chance that Tysabri would be IT. But Tysabri wasn’t IT at all.

Then Ocrevus was going to be IT.

I mean the Ocrevus hype had me pretty much preparing to become a cross country runner or perhaps a professional triathlete. The patients who could walk again, could talk again, could see again. The patients who could flat out live again gave me hope that felt like a gossamer slip of expensive silk I gazed through, that made the world look and feel more possible. Until it didn’t anymore. I just kept getting worse and wondering, why was this not a miracle for me? Why did this drug save so many people but not me? I was willing to keep slogging through it on that sheer filmy hope, but then it got to be too much for me.

How much slogging could a girl do before looking around for the next IT?

My official fourth dose of Ocrevus was scheduled for October 8. It is now canceled and I am awaiting the date for my first Lemtrada infusions. Round 1 will be five full days of outpatient infusions.

A friend of mine just went through it and I participated in her journey through social media, admittedly not quite like being there but the best I could manage. I was truly proud of how she powered through it. Eight to ten hours a day in the infusion room getting pumped full of a cocktail of benedryl, Solumedrol and Lemtrada is not for the faint of heart among us. Alexandra got through it with Snapchat filters, lollipops and friends along for the ride. I feel lucky that I will get to be a part of her post-Round 1 infusion experience so I can maybe get a glimpse of what this might be like when it happens to me – knowing full well that my experience could be completely different and nothing like Alexandra’s. Following her path is comforting to me nonetheless.

My turn with high-dose steroids that ended a week ago today left me even worse off than I was before. According to The Great Scott, my neurologist, “it happens.” It doesn’t happen often but sometimes after a hit of high-dose steroids patients experience a heavy symptom rebound apparently without rhyme or reason. “Don’t worry, Maribeth, it will only last a few days we can hope.” We can hope but we don’t much these days because here I am a week ago to the day of when the madness started and I’m still stumbling around my house holding on to walls and looking at flights of stairs like climbing actual mountains, feeling like my entire world will always consist of these rooms, these things, these pieces of furniture and these walls. I know it won’t, but once again, I struggle between hope and utter despair – not knowing which location feels quite right because neither extreme really does.

This past week while not being strong enough to manage my own in-home needs, I managed to do the following:

I talked to my Lemtrada One-to-One program nurse, by the name of Deb. She was so chatty and perky she instantly made me want to punch her in the face through the phone. She explained to me about the protocols I would follow. The anti-virals and other prep drugs I would need to take. The “listeria protocol” I am supposed to follow to help prevent food-born illness (illness of any kind while on this treatment is very bad and probably will involve trip(s) to the hospital). She explained cellulitus. She explained the blood work I would need to get monthly for at least the next five years. she told me I had to sing happy birth day to myself twice while washing my hands. She explained I would have to wash my hands a LOT. We talked thyroid issues, blood counts and other important things to be aware of. It felt like a lot but I just took notes and told myself this would all be fine. IT will be FINE.

I managed to get to last week’s list of quickly procured appointments that need to be accomplished before my drug can be approved. Here’s one thing I will tell you. My training and nearly 30 years of experience running complex marketing programs for big clients has come in very handy in this illness management process.

I make project plans. I have lists, apps and spread sheets. I have doctors and back-up doctors and insurance and HR on speed dial. I have to jump off important work calls when the elusive dermatologist I’ve been trying to bribe for an appointment happens to choose to call me back because of course that’s when he chooses to call me back. I know how to get shit done, escalate issues to higher authorities and I use my stern work voice to accomplish all of this.  My stern work voice makes the impossible possible sometimes but other times it doesn’t matter how large and in charge I am, the health care system evil laughs in my face.  That happens sometimes in my work life too, but all of the sudden it feels very different to me.

Work is hard? Whatever. Try something really hard and maybe you can impress me with that.

I managed to make the phone calls necessary from the lobby of Quest Diagnostics that were required to get my blood orders and my urinalysis order sent to one location instead of two because I wasn’t leaving that lobby until I knew I didn’t have to go to another location for another thing. I didn’t have steps in me. The fact that I got this accomplished was a bigger win than anything I could have accomplished in my real life under seemingly worse circumstances. I felt victorious. It felt as good as winning a giant new account at work. It might have felt better because I’m reminded more and more lately about how little I actually matter in that world I used to value above so many things.

Once I somehow got enough pee in the cup and the vials of blood were sucked out of me I had to drive north a few exits to get to a dermatologist who had time to see me this week. I took my mom along on the ride because I needed the moral support and maybe even the physical support that even my favorite rollator can’t provide. We joked that we felt like we were going on vacation not to some rando dermatologist’s office in a strip mall in Natrona Heights. My mom has become my shot gun, my driver and my helper. She’s 78. Let that soak in a minute.

Next week, I have a pap smear and a spinal MRI. I also have to get myself to TGS’s office because apparently there is more Lemtrada paperwork they didn’t have me fill out the first time. Shocker. Then we need to get official insurance approval and schedule the week long infusions. Easy peasy.

I know I don’t sound as excited as I am.

I am excited. I want this new drug to be IT so badly I can hardly see straight. I know it’s not a cure. I know it might not help a single symptom improve but it could help me from continuing to get worse and I’m telling myself that’s enough. I will get back into PT once it’s over. I will try to rebuild what the drug will take away – things like balance, strength and coordination. I will do all of it because it is my latest hope and I need to believe in it no matter what.

I will tell you that this day is not as bad as yesterday. I don’t feel as weak or as shaky. Maybe tomorrow I will actually feel up to taking a shower. Maybe Monday or Tuesday I will shuffle my weak ass into the office. Maybe outside world life will become more possible again – until the infusions begin and the outside world becomes a cesspool of germs and potential evils that I will need to avoid until my no-longer-functioning immune system regenerates itself. I feel like I need to get as much outside world life in before infusion week even if it involves moving so slow I seem not to be moving at all. I need to squeeze some outside in before inside becomes my life again for a while.

Who am I kidding? Dragging myself to the MRI location and the different pap smear location will probably exhaust me to the degree that outside world life could mean inside other Allegheny Health Network facilities but beggars can’t be choosers and I am most definitely the beggar in this scenario.

I’m telling myself that if this drug isn’t IT, there are still other things on the horizon that could be. There’s that crazy hopeful word I’ve been reading and hearing more about: Remyelination. I love the sound of that word!

Oh. I also decided to give myself something to look forward to for infusion week when it gets here. I’m going to listen to audio books. I know reading will be hard – concentration and focus are hard to maintain while being pumped full of scary drugs but I can surely listen. I’m making a list of the audio books I hope to get through. I’m actually excited about the idea of this. I get excited about books. That’s part of old me that will never change.

So the next journey has begun. Buckle up.