Fourth Wheelchair Ride, Ocrevus and Other Tales

Well, if this is Mt. Sinai, this must be a wheelchair.  Right!  I was scheduled to see my neurologist prior to my second Ocrevus infusion.  She’s on 98th Street and the infusion was on 102, four tiny blocks.  As I have mentioned, I did see a new neurologist closer to home.  She works under the doctor who provided my confirming diagnosis.  I recently connected with someone who had her as a doctor.  She called the 2nd opinion doctor a “robot genius”.

The stopgap neurologist had upped my Baclofen to 6 pills a day. I felt I didn’t want or need it.  I was discussing this with my doctor, Dr. F and how the other doctor was just missing.  I told her about “robot genius” and how I term the new one, “mini robot genius”.  We then had a whole conversation about med students, empathy and humanity. She feels it is lacking in her students.  She  considers me, as her patient, as part of her extended family and it shows. We discuss my signing up for the MS Gym.  Dr. F is pleased with that idea and tells me she has other patients who use it.     She assures me that even though I have deteriorated physically my mind remains the same.  I do feel like me until I try to stand or walk.

Ah, now I have to get over the four little blocks to the infusion.  I used to be able to walk a block in less than a minute in high heels!  I really thought I’d be able to struggle the 4 blocks.  Tom asks Dr. F if we can sort out a wheelchair and go underground.  No problem, she’s on her way out (she came into the office before her rounds to see me) and will speak to Mr. Mike. Mr. Mike greets me near the exit.  I get into the chair.  Tom takes the walker and we are off to the races.  It’s a beautiful autumn day in New York City so Mr. Mike decides to whisk me above ground.  It’s odd to be moving so quickly without any effort. I used to love the feeling of my body whizzing down streets, boardwalks, wet sand.  We are zooming along city blocks.  It’s dizzying.  It’s the speed I used to walk at but now I am in a chair and relatively invisible.  I am invisible until we get to the building and the elevator.  Even though this is an hospital, people get slightly huffy by the elevator.  The chair disrupts the space.  Mr. Mike is a rockstar in this building as he used to work here.  The acclaim becomes even more pronounced as we get to the infusion floor.  Apparently, I am confused by referring to it as an infusion.  In this world that’s for cancer patients.  I am here for therapy.

Tom has been insistent that he will demand Nick, my previous nurse as he knows exactly how to hit my one vein. No, I’ve never had a drug issue but skinny veins.  Nick is not in and I get a new nurse.  She is a compact Filipina nurse.  Years ago, I had a temporary  fill in job with a Filipino family I knew.  I described it as selling Filipino nurses to hospitals.  I was terrible at it but apparently the idea was sound.  C looks at my chart and states I must have a good vein other than the one in my hand that Nick has noted. She gets a heating pad, wraps me up and finds a  vein in my arm.  This means that instead of having a needle in my hand for  4- 5 hours I could have it in my arm.  It makes it a little easier.

I am used to the infusions by now.  Tom gets his fill of HGTV as he sits by my side.  I get uninterrupted reading time.  The problem is that I can’t use the facilities for the infusion period.  Actually, I can but it is involved so I have always held it. Yes, in Uruguay as a thirty something for  13 hours!  Buckets and newspapers and curtains that don’t close, do not work for me.  My luck finally ran out this time.  With close to 90 minutes left, my bladder had it.  I caved.  An expedition was needed -an aide holding the IV pole and me, Tom following behind with the walker.  The fun started when we reached the bathroom.  I do have bashful kidney/shy bladder but we were way beyond that.  The three of us caravan into the bathroom.  Now is the tricky bit – the aide has to leave, the pole needs to be held up and me, too.  My recollection is just of me crying out, “no, no I don’t want to fall.” She is tiny, smaller than my new 5’3″ stature but strong. Somehow we manage to get my pants off and me situated while Tom keeps screaming at me, “Be careful of the IV! Be careful of the IV!”  I walker it back to my chair with Tom holding the IV.  The aide literally left. The rest of the procedure is uneventful.  As usual, the next day I was my usual boiled lobster color.

I did come out of it with a somewhat brighter attitude.  I always get a brief bounce from the Ocrevus.  Plus, I have felt that I was getting weaker.  Dr. F asked if I had had an infection.  Bingo!  Teeth.   There’s hope once more at the bottom of Pandora’s box.

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