My new medication, Tysabri, is delivered through an IV infusion once a month. And I love it! That may sound odd, but after so many years of difficult weekly, for a while thrice-weekly, self-injections into my thigh muscle with sharp needles, an IV drip is heaven.
The infusion center is located where it is convenient to get to from work, by either train or car, and is only a few blocks from my daughter’s school, for easy pick-up afterwards. The center is brand new: there are reclining comfy chairs with their own televisions, wireless internet, heated blankets, and all of the free Ginger Ale and Lorna Doones you can eat. It is like a mini-spa … with an IV drip. And the nursing staff couldn’t be nicer; they all treat me like I am their favorite niece.
I take time off from work one afternoon each month for the 3 hour appointment, which consists of 1 hour of preliminary questions, 1 hour of the Tysabri infusion, and 1 hour of observation. All of this rigmarole is because 2 people in one Tysabri drug trial died. Good reason. So I go along with it all.
The questions are easy, but odd, given that they are being asked by the nurses in the hospital of the doctor, my doctor, who prescribed the Tysabri in the first place.
Question: “Are you on any immune suppressing medications?” Now shouldn’t they know that? Shouldn’t they have access to my medical records? Wouldn’t we all feel better if they did? Or are they talking about illegal immune-suppressing drugs? In which case, like I would tell!
Another question: “Have you had any organ transplants since your last infusion?” Again, really? My doctor’s office wouldn’t recall that? Slipped his mind that I was in for a lung transplant last week? Or do they mean illegal organ transplants?
The infusion itself is unremarkable. I sit there. I watch soap operas. I eat some Lornas. It is over in 1 hour, or 1 General Hospital.
Lastly is the hour of “observation” where I am just supposed to sit around in case I have a negative reaction to the infusion immediately prior. That way I am in the hospital already, with nurses and equipment, if I decide to turn purple or start to bleed from somewhere. (I don’t know if bleeding is possible … I have no idea what the actual options are here).
The first few observations were just plain weird. One of the nurses sat at the nurses’ station directly in front of my hospital barco-lounger and stared at me. Sounds ok? Well, think about it. Someone, anyone, staring at you for 1 hour … 60 minutes. I tried to just watch the TV, positioned slightly off to my right on a wall-mount, but it was impossible to forget about “the starer.” [Insert creepy music here.] It got very awkward, Stephen King-y even, after a while, like something dreadful was about to happen and the starer was the portent of doom. I also had an unwelcome desire throughout all of the staring to say something. “Hey, there” or “See anything yet?” or “Stop staring at me!” I never said a word, though, because the observation was so intense it seemed that if I disturbed her she might actually have to start over, god forbid.
This observation part is better now since I think the nurses feel relatively sure, after 22 visits, that the bleeding or purpling, or whatever, is unlikely. I still stay for the full hour, but the nurses are very casual about my presence. But now that the staring is far less strict, a different sort of awkwardness has arisen. The nurses, now relieved of their intense observation duties, spend their newfound time chatting amongst themselves, shopping on-line, and discussing patients not currently in attendance. Not so weird yet, who doesn’t engage in water-cooler talk at work. It is what these nurses talk about and shop for.
Once one nurse was shopping for coffins on-line. Seriously. Right in a room of patients of varying degrees of illness; in fact, the guy to my left looked like he might be in the market fairly soon. Now I can’t see their computer screens, so I don’t know if this is an Amazon.com item or if she was going bulk from Costco. But the discussion definitely caught my attention.
It turned out this nurse was shopping for one for her mother, who didn’t seem, as I gathered from the conversation, to have even so much as a cold. So maybe this nurse was just a planner. Her mother wanted a white coffin with pink satin lining, but she thought that too tacky and was going to go with an oak coffin with a white lining for her. So much for last wishes. This started a full conversation among all of the nurses on personal tastes in coffins. Two were in favor of your traditional black coffin. Two others were planning on being cremated, so wanted to know what urns were available on-line. The last one said the conversation was morbid, as she squeezed in to get a closer look at the screen.
Eventually I was drawn in, as I am sitting right there, of course, front and center for the staring.
“What about you, Katie?” (They never get my name right.)
“I haven’t really thought about it,” I offered, “Should I be?”
They chuckled, but then all glanced at my IV bag at the same time.
Another time, completely separate conversation, a nurse, one of the cremation-ones, was investigating the option of, upon her demise, having her ashes turned into a gem stone. She had just discovered this service, along with a service where you can have your dog’s DNA tested to determine breed. Since she didn’t have a dog, she was pursuing being made into a necklace or some earrings, maybe, for her daughter. A conversation began about how much jewelry did everyone think her ashes could produce. One necklace? Necklace and matching earrings? This nurse was a bit plump, which no one stated, but everyone assured that she could produce a full matching set.
“What do you think?,” the ‘full-set’ asked me.
Well, I had to reply that I thought it was a bit creepy. I wouldn’t want my daughter wearing me as an earring, nor could I imagine that she would want to. “Yeah,” the nurse said, “maybe it is a little creepy. And you don’t seem like the jewelry type.” She sighed, but then had an idea.
“Maybe they could make you into a nice little Christmas ornament.”
(P.S. If you would like to be an ornament, or make someone else one, www.memorypendants.com.)
