It really does feel so good, I am not being even remotely sarcastic. I know I give my MS specialist Dr. Scott a hard time in this venue. I work him over pretty good but my expectations were rightfully high.

The Great Scott came with such high accolades and endorsements (from none other than my other most valuable care provider, My Precious, aka Cheryl my therapist) not to mention from notable expert sources like the MS Society etc etc. It was all but impossible not to imbue him with wizard-like qualities after I researched his pedigree. He’s the man around here. He is indeed the man for what ails me.

Like most men, I have a love/hate relationship with him.

I love his expertise, his giant brain, his hilariously low-key and yet ebullient delivery for all kinds of critical information both incredibly troubling and incredibly hopeful (“Well you know Maribeth, any of these drugs can do the worst things to you. In the worst case a kidney transplant isn’t outside the realm of possibility” is delivered with the same soft-spoken monotone that accompanied, “I’m thinking that if we don’t do this we will always look at each other and wonder what could have been if we had. And I think this might be the one.”  Also, I am not making these things up).

When he made his grand entrance into the exam room, he looked happily surprised to see me. He held his arms out in front of him, looking all healthy and tan in his plaid shirt and tan pants as if he was pleasantly surprised to see me, “It’s been a long time since I’ve seen you, Maribeth, how have you been?”

“Well, not because I haven’t wanted to see YOU, TGS, you seem to have been on vacation for most of the summer when I needed you most but I guess that’s how things work when you’re the man and it’s summer time and all.”

“Well, Maribeth, I have been doing this a very long time. You could have called me. I could have talked to you from afar. I’m pretty good at this doctoring thing after all of these years. I can do it from pretty much anywhere.”

“Funny, Dr. Scott, I keep telling my own employers the same thing but I’m guessing that’s starting to get a tad frustrating for them, too, but I hear you. Next time I’ll call.”

We went over my list of things…

Symptoms going haywire (check); intense vertigo making a re-appearance (check); instant loss of all measurable PT-induced symptom improvements completely out of the clear blue sky (check); weakness, off-the-charts fatigue and complete bodily imbalance (check, check and check again); new assistive wheels (check again).

TGS: We are in re-lapse again, Maribeth. I don’t like it.

BBAD: Imagine how much I like it. Remind me to tell you the story about the transport chair and the freight elevator. It’s a goddamn laugh riot.

TGS: Your disease continues to be a challenge. You respond to treatment temporarily but it wears out too fast and doesn’t last. Falling twice in one week probably means the rollator is a good idea but I’d prefer you don’t fall at all. It’s time to make another change. If you’re up for it.

At this point in my brain, David Bowie starts playing in my head and becomes the background music for the rest of our time together. Also I’ve begun to refer to myself for short as “BBAD” mostly because it’s the acronym for my blog (as pointed out to me by one of my favorite readers and friends, Kara) but also because when you say it, like out loud, it sounds like my name is BE-BAD and that feels fitting too.

(In the background Bowie is crooning…Still don’t know what I was waitin’ for, And my time was runnin’ wild a million dead-end streets and Every time I thought I’d got it made It seemed the taste was not so sweet…)*

TGS: It’s too early to say definitively but it is starting to appear that Ocrevus might be more effective for those a little younger than you and with somewhat of less aggressive disease. That is certainly not true in 100% of the cases so don’t get your friends all worked up about that, but anecdotally this drug works better for those in the 35-40 range. You being considerably beyond those years is a challenge.

BBAD: Yes. Thank you Dr. Scott for reminding me of my advancing years AGAIN, we can move on now.

( Bowie comes in again… I watch the ripples change their size But never leave the stream Of warm impermanence And so the days float through my eyes But still the days seem the same…)

BBAD: Can my body handle this new drug? Is Lemtrada going to make me worse?

TGS: That’s certainly not going to be our intent but anything is possible. We both know that by now. There’s a 1 in 3 chance of blah and a one in 300 chance of blah blah and there’s the possibility of major nephritis that could mean you’d need a kidney transplant so that’s bad, but again, we know you’re strong, you’re otherwise scarily healthy – good-looking CBC by the way and you look like you’ve dropped a few pounds, good on you – I think you can handle it if you think you can handle it. You seem surrounded by all manner of support. I’d say this is a chance you’d be inclined to take but as always, you’re the boss.”

BBAD: Ok, stop buttering me up with all of this “boss” business. Get the paperwork. I’ll sign your damn papers because you know that’s what I’m gonna do. But I don’t like that look in your eye, TGS, I know that look and I think I know very well what’s coming next…

(Bowie cuts in again here…And these children that you spit on As they try to change their worlds Are immune to your consultations They’re quite aware of what they’re goin’ through…)

TGS: I’m sending in an order for three days of…

BBAD: NOOOOOOOoooooooooooo not that! Anything but that!

TGS: Risk permanent disability? We could do that but I’m disinclined. I assume you are too so you can pick up the script at Towne Drugs on the way home. It’s only three days. You can handle it. It will help stop all of this bad that’s going on right now.

BBAD: Three days, not five days?

TGS: Five days ups your chances of bad things happening like steroid induced psychosis according to the research and we can’t…

BBAD: Wait, WHAT?!? You’ve had me on steroids over and over again these last 24 plus months and you’re just mentioning this now?!?!

TGS: It’s not going to happen at three days. You’ve tolerated high-dose Prednisone well in the past, for three days. You’ve told me you want to be aggressive. We can change that course of treatment but I’m not sensing you’re rea…

BBAD: Oh shut it…you know damn well I’m not ready to be anything less than balls to the damn wall aggressive. Not yet. I know you think I’m old and all, but I’m younger than YOU and I’m not throwing in the towel just yet.

So here we are again. At the beginning, stuck in the middle with you, walking on sunshine and wait, what song were we singing again?

Bowie was singing. That’s where we were!

Ch-ch-ch-ch-changes
Turn and face the strange
Ch-ch-changes
Don’t tell them to grow up and out of it
Ch-ch-ch-ch-changes
Turn and face the strange…*

I’m ready to face the strange. Again. Everyone needs a little strange some days right? That sounds all kinds of wrong but TGS knows MS and as it turns out, TGS has also begun to demonstrate that he also knows me. Neither of us wants to give up just yet. So neither of us will. Not yet.

Talk to me a few months from now when I’ve been sitting in the infusion room for 8-9 hour days for 5 days in a row getting my Lemtrada ready to jump out of my skin while some heavy-duty drug flows through my veins destroying all semblance of an immune system hoping that when the 5 days of poison are over again, this time, everything will grow back in a much better way (hopefully with working kidneys) and I will reach that oft-described MS nirvana of ‘stable.’

Note that I didn’t say cured.

Or better. Or fixed. Or anything like that. I’m looking for stable. I’ll take stable for even a little while, to be honest. I’m usually really good at changes but these last few years have kicked my ass plain and simple. I’m not giving up, and I know it could get a lot worse before it gets any more stable but I have to try everything that’s currently available to get me there. I just have to.

Bowie comes back to sing a pretty song right here in my living room…

Pretty soon now you’re gonna get older
Time may change me
But I can’t trace time
I said that time may change me
But I can’t trace time.*

* (Songwriters: David Bowie, Changes lyrics © Sony/ATV Music Publishing LLC, Tintoretto Music, BMG Rights Management)