Yesterday, I had the 2nd infusion of my first round of Ocrevus. I have noticed some tiny, welcome improvements in the last two weeks. However, I was not strong enough to commute so needed car service again into NYC. It takes quite a bit of the stress out of the day but it balances as it costs a small fortune. I am like Scarlett O’Hara – I’ll think about it tomorrow. Instead of a Town Car, a GM Yukon pulled up. It had two steps up and a high seat. Fun. The way I usually get into my little Encore is to park my butt in reverse on the seat and grab my right leg by the spectral leg aka Frankie and pull it in and then lift my leg. The seat in the Yukon is too high for this maneuver. I am tense as it is. Tom is getting upset. The driver is flummoxed. We try for me to sort of crawl in front-wise. That is so not working. Back to the other way. Tom has to try to grab me under my armpits and push me up. He has a hernia so this is not healthy. We get it done. The driver says he hopes he gets us for the return trip. I tell Tom to call the car company and just say no. Of course, he does not do this.
We get to the hospital. Our plan last time had been to get a wheelchair once there but there were none. This time, we discussed bringing in the rollator aka the protective shield but decided with my new minimal strength, the stick would do. Well, as soon as the hospital doors opened, the security guard/receptionist rushed over with a wheelchair. Oh well, might as well lay back and think of England.
I had been approaching this infusion with some trepidation due to having to have it in my hand and the two attempts to get the needle in last time. I did have Nick, my favorite nurse, again. He understands my phobias, eccentricities and my veins! This time was painless. Nick informed me that the problem is that I have skinny veins. For someone who has struggled with weight for just about her whole adult life, this is peculiarly welcome news. My blood test comes back good. He even tells me my kidney has not gone up which apparently is great.
Steroid time – minimal bad taste. Everything goes well. As I explain to Nick, aside from my blood/needle thing, I am a good patient. Except for this condition and a propensity for pharyngitis, I have been ridiculously healthy. I had chickenpox as a child. I literally had one spot! There was a measles epidemic when I was in first grade. I am a boomer so there were lots and lots of us. 6 children in the entire grade did not get measles. I was one of the six despite the fact that I lived in a NYC housing project. This whole thing has come as a late midlife unpleasant shock.
The infusion goes well except at the end when another nurse comes to remove the stent and sees my right purple Raynaud’s hand. We calm her down
Return trip, rush hour. Guess what? Same driver, same massive Yukon. But now I have to get in on a crowded street in rush hour with a bandaged right hand. The driver is double parked and I am floppy. A cop pulls up. To quote an old manager by way of Gilbert and Sullivan, “Oh joy, oh rapture unforeseen.” He says, “You don’t have to worry.” as I say “Could you please help?” He zips by. Ah, well. We get me in again and we are off.
This morning I do wake up with the boiled lobster look but if fades. I am more energetic than I’ve been in awhile. It’s easier to type. My speed is almost normal. We went to Bjs. My body was firing so I nearly tripped three times. Same as the first time with Rituxin, the spirit is willing but the muscles are weak. And I was able to make it into the car easily. I am not exhausted now. Time to implement my plan – I’ll be doing the MSWorkout and the MS Gym along with a gluten-free, dairy-free, white sugar -free(well, I am going to do my best on sugar). And, most importantly, medical weed here I come!