Two days after my encounter with the phlebotomist, a woman from the Cancer Center called to make an appointment for me to get the first infusion. We set the date for February 9. At 8:30 that morning, I phoned in my cancellation. I hadn't slept well, and my legs were weaker and wobblier than usual. Russ was going to provide transportation, and I was afraid he'd also have to give me a lift off the ground when I fell getting from the manual wheelchair into the car, and when I got out of the car at the Cancer Center. And getting there might be the easy part. The night before, I saw on a Facebook site of MSers who are getting Ocrevus that weak legs after an infusion aren't uncommon. Poor Russ, I thought, it might be easier for him to push me home than try to get me in and out of the car after the infusion.
Covenant Woods provides transportation to and from medical appointments on Tuesday and Wednesdays. My motorized chair fits nicely on the bus, too. But the Ocrevus infusions take several hours, and I needed to find out from Dennis, Covenant Woods' bus driver, the time I needed to be done in order to get a ride back to the Woods. "Four or four-thirty," he said. The following Tuesday, I called to reschedule the appointment. I gave her a quick explanation of my situation and told her I needed to be out of the Cancer Center by four. The best way to be sure they would finish with me by four-thirty would be to tell her I had to be out by four.
"Well, would Tuesday, February 20th, at 10:30 work?" she asked.
"Will I be done by four?"
"You'll be done by 2:30."
"OK, Tuesday the 20th at 10:30, right?"
Dennis got me to the Cancer Center at the designated time. At 11:15 a young man, who will graduate from the Columbus State School of Nursing in the spring, stuck a needle in my arm, while the nurse supervising him complimented me on my excellent, easily accessible veins. Then another nurse hooked up a small bag of steroids to the IV and had me take a Benadryl and one other pill.
"We'll give that stuff a half hour to get into your system, then we'll start the Ocrevus," she said.
A few minutes before noon, the nurse was back and explained that the IV would start slowly and speed up at regular intervals. Doing a quick calculation in my otherwise empty head, I determined that between the IV and the hour afterward that they keep you for observation, I wasn't going to be out of there by four o'clock.
"If I'm not out of here before Dennis clocks out, I have no way to get home. This chair is nearly as big as my son's Aveo."
"You don't have to stay for the hour of observation," she said.
"This is the first time for me, and I know people sometimes do have difficulty after an infusion. I'd rather come back on a day when we can get an earlier start."
"What if we can get another ride for you?"
"That'll work for me, All I want is a way home."
"OK, I'll call some people and see what we can do."
A few minutes later she came back to tell me she had talked to Dennis, who told her 4:30 was the latest he could pick me up.
"As long as you get me out of here by 4:30, I'll stay."
"It's a deal," she said as she turned on the IV.
It all went well. I read some, slept some and read a little more. And I spent more than a few minutes looking at the IV bag to be sure the amount of Ocrevus in it was declining. At 1:45, my back started to itch. Not all of the back, just a streak below the shoulders, were my back met the chair. I couldn't scratch it, so I wiggled around as best I could to relieve the itching, The wiggling didn't produce the desired effect. And after ten minutes of it, I realized I was beginning to itch all over.
When a nurse came by, I told her about the itching. She lifted my shirt and looked at my stomach. "There are spots all over your stomach," she said and went to tell the other nurses. One of them called Dr. Verson's office.
"He said to turn it off and for us to keep you here for an hour to make sure you're OK," the nurse said when she came back. "And he wants you to call his office tomorrow to set up an appointment." I had difficulty processing what she said, I was getting woozy and felt as if I might pass out.
At 2:30, the Ocrevus stopped dripping into my bloodstream. Within minutes, I felt much better. For the next hour, I sat and watched the clock. Periodically a nurse came by to check the spots on my stomach. They were gone by three o'clock, and I was gone at 3:30.
I called Dr. Verson's office this morning, and I'll see him Friday at 9:30. When I called, the woman I talked to told me to come in at one on Friday. I then called Russ to make sure that would work for him. He said that was fine. Two minutes after talking to Russ, the phone rang. It was the woman from Dr. Verson's office. "He wants you to come in at 9:30," she said. Another call.to Russ, and being an agreeable and flexible young man, he said he was fine with the new time. It will be interesting to hear what the doctor has to say.
* * *
I'm dropping things more frequently these days. It is frustrating, but picking up what I drop provides a little exercise and sometimes a sense of accomplishment and pride. Saturday, cottage cheese topped with some cherry tomatoes sounded like a good lunch. Getting the cottage cheese into the bowl was easy-peasy. And I had every reason to expect that getting the tomatoes on top of the cottage cheese would be just as easy. It was. But, as I picked up the container of unused tomatoes I dropped it. There were tomatoes everywhere, thousands of them, I tell you, thousands of them.
OK, there were fifteen or twenty tomatoes on the carpet, but someone had to pick them, and that someone was me. With a steady hand on the joystick, I moved the wheelchair from tomato to tomato, reaching down and picking each one up. When I had them all back in the plastic container from which they had fallen, I surveyed the carpet, expecting to see a big red splotch, the remains of a tomato I'd unknowingly run over. But there were no splotches. I had cleaned up the mess without making a bigger mess in the process. Damn, I'm good.