I had an off-schedule infusion today because it was also my day to visit with The Great Scott, in the flesh. You see TGS when he can see you, not when you damn well feel like it, so off-schedule infusion it was!
It’s funny. The infusion room is not a place I am ever very enthusiastic about entering but in some ways it’s also the place where I learn the most about my disease and get the most useful information.
Going on an off day is like going to a party with a bunch of people you don’t know but who have known each other forever. One of the women in the room today has been getting infusions for 14 years. That kind of blew my mind. I can’t even remember which one this is for me, but it might be 12? I can’t be certain.
Another woman wore an anti-Donald Trump t-shirt and kept spewing news and stories from the Internet openly in the room as she read them from her phone. Here’s the thing. I am of like mind, and as you may have noticed if you know me at all, rather passionate about my anti-That Man feelings. But in the infusion room you cannot escape. It was clear there were three of us on the same page and one of us decidedly not on that page. It was more than a little bit awkward.
I learned today from my all-lady infusion group that menopause and MS are not friends. I told them I insisted to my gynecologist to put me back on the pill because I wasn’t prepared to deal with all of that at the same time as all of this. The ladies unanimously agreed that I made the right decision. Most of them are neck deep in the menopause (as I like to call it) and all having exacerbated symptoms as a result. I am not anywhere near ready to deal with that and THIS at the same time. I know I said that already but I felt like it deserved mentioning twice.
My month has been marked by a persistent viral illness and some pretty off the charts stress levels (the stress is caused by life events over which I have zero control and which are frankly not mine to write about openly so I choose not to, but trust me when I say it’s…a lot).
Illness and stress at the same time mean my usual degree of feeling like crap is multiplied by a factor of about a million and basic life tasks become super challenging. I’m dirtier than usual (showering is just not possible when I feel like this) and more tired than usual (I’m not even sure how that is possible, but somehow it is). Life hasn’t been all sunshine and roses this month, thank you very much, and I’m not signing up for menopause on top of that. Period. At least not willingly.
Nurse A was on her own today and hustling her little butt off. I feel badly for her. She tries so hard to remain positive and upbeat but every now and then you get a glimpse of what her life is like working for the hospital and it’s not easy. Then she has to deal with us on top of that. It makes making ads for a living feel kind of like having a lemonade stand.
One of my fellow infusees today was a very challenged walker. She arrived late, like most of them did today complaining about how shitty people drive when it rains in Pittsburgh (which they do! Man it was a hot mess this morning). She inched her way across the room, pushing her rollator in front of her. She dragged one hot pink Nike clad foot across the linoleum, taking teeny tiny steps forward with her good foot. It felt like she was never going to make it across that room and I couldn’t help but wonder why she didn’t take a chair closer to the door. But as I looked down and found myself in the same chair I always sit in (fourth chair in from the door) I realized that habits are hard to break and comfort comes packaged in familiarity. She wanted to be in her chair. I get that.
I had to stop mid-infusion to go have my sitting with The Great Scott.
Like I said, TGS waits for no woman so I got my line capped and headed across the office to the other side where the geniuses live. TGS had two students with him today observing me so we went over my case in intense detail. I learned things I probably learned before but was too muddled to pay attention or know what they meant. We looked at pictures of my brain for a very long time, different slices from different angles, all lit up with bright white spots, my own personal festivus of lesions. I asked TGS how many lesions I have. I don’t know why I wanted to know but when you have a disease marked by ambiguity sometimes any concrete information is welcome even if it’s quite meaningless.
TGS: “There’s a few, (1-2-3-4), there are more here, (7-11-14), and here are more in this view, (17-19-25). I’m going to say you have anywhere from 30 to 45 lesions in your brain. A few more on your cervical spine. They are the likely culprits for your walking difficulties.”
Me: “That sounds like a whole lot.”
TGS: “Well, it’s not a lot and it’s not a little. It’s pretty much average. But these days physical lesions in the MRI are less indicative of how you experience your disease. Research has shown this over time. The better indicator is how you are doing over time.”
Neuro Students: Enthusiastic head nodding, concerned faces, some muttering. Me thinking: “MORE TIME, JESUS CHRIST HELP ME.” But smiling pleasantly at all of them like a daft lunatic.
TGS: “Student #1, why do we prescribe Oxybutynin – Maribeth, I’m putting you on Oxybutynin.
Student #1 with very kind eyes: “Uh, something about smooth muscle, controlling the uh, the bladder control, uh…”
Haughty Student #2: “It works on the striated muscle in the blah-di-blah-di-blah blah blah blah…” I’m sure this was the right answer because TGS clucked approval at him.
But I got the impression that Student #1, with the kind eyes, was his preferred student since he had him do my vision field tests and some basic neuro tomfoolery that happens at every appointment. Student #1 was a super small Asian boy, very thin, jet black hair that stood perfectly on end uniformly all around. His eyes were very dark, definitely black and sparkly. He shook my hand when he walked in the door, his hands were very thin and cold. The other one? He was a beefy white dude with dead looking pale blue eyes and liver-looking lips with a half untucked plaid shirt and he did not shake my hand. I did not like him at all. He was way too superior.
TGS spoke directly to me today instead of into his mini-dictaphone. It was a pleasant change of pace. Here is what we (generally) agreed upon:
- I’ve not yet experienced a real remission but he thinks it’s going to happen (guess what? it takes time!);
- He thinks this drug isn’t helping me as much as he’d hoped. He said “Tysabri is what I consider my best drug but it’s not working out that way for you. I think we want to put you on the new goo.” He means ocrelizumab, the not-yet-FDA-approved drug that everyone is buzzing about in the MS circles (who knew there were MS circles? Well, there are.);
- The new drug should be approved at the end of March, so my last Tysabri infusion will be in March. Then I need to be flushed for two to three months. That means no DMTs for me for 60-90 days. This scares me a lot. I’m kind of dreading April through June as a result. TGS said we might do some low-dose steroids during that time, depending on “how bad you tank.” He actually SAID that. Sigh;
- My other new drug (the one TGS quizzed the student about) is to help “calm” my over-active bladder. Super fun. I hope it helps because when I’m not sleeping I’m peeing and it’s getting rather old.
- The best thing he said during those intense 20 minutes was this, while looking at my brain on the screen in the room, “Most people start to have brain shrinkage when they hit a certain age and they have MS. If I didn’t know anything about you or this case, I’d look at this brain and see a brain of a young healthy person. This is a young looking brain.”
That might be the best compliment anyone has ever given me.
So I shuffled back to the infusion room to finish off my fill-up and share the TGS’s opinions with the ladies, and maybe gloat a little about my awesome young brain.
They unanimously explain to me that the early years (YEARS) are the worst. Each of them had a good three or four years of utter hell before things leveled off and they found some kind of normal. Then for some of them, menopause shoved them back into utter hell and the whole leveling off thing has to happen again.
This scares me a bit. It seems fairly likely that by the time I “level off,” assuming I do, it should be right about time for my hormones to go wackadoodle. I feel like my MS timing is all off. Young looking brain or not.
But TGS remains optimistic on my behalf. He said to me, today, “I believe that once we find the drug that works for you all of this can be reversed. Or at least most of it. I am optimistic.”
He actually made eye contact when he said that part. I felt a mild shiver run down my spotty spine.
I wish he could write me a script for optimism. My insurance would probably reject me for that drug, too.