And also since then — but maybe not quite so much.
I say “the time would be filled,” but the time was not so much filled as overfilled.
The time was already full before I put the new thing in. I overfilled my time, I think, to hide what was already there.
Some things are so horrible they need to be hidden right after they become visible. They are too horrible to be seen except very slowly, or in very small amounts. Or they are too beautiful.
There was a television set above my chair that received fifteen or twenty channels.
Here is a logical sequence of things to do in that small room. You arrive. You sit in the chair. You unbutton your shirt or take it off and put on a hospital gown that opens near your heart. You take the tubes in your hand and give them to the nurse. The nurse connects your tubes to the tubes of a machine that some fluid has been put into. The pump is turned on. You button your shirt around the tubes as best you can. You arrange yourself in a blue reclining chair. You press the button on the control that lights the television screen. You press it again until the screen changes to an agreeable picture. And you watch it. You get up and go to the toilet once every hour or two, pushing the pump on its casters. Once or twice, food arrives, and you eat. But mostly you read a book you have brought, or if you have not brought one, you watch the television, or you sleep.
After the first long infusion I felt different. Of course. The medicine was new. The experience was new. I was still in my first year of Latin, used to thinking hard before the meaning came. My parents came into the room to wheel me outside to their car and take me home. And they asked me what I had read and what I had watched on the television.
I had lain there in the reclining chair for ten hours, but I hadn’t read anything or watched the television.
I was going to say I had lain there for ten hours, waiting. But I hadn’t been waiting. I hadn’t been anticipating the next moment. I think it was the first time in my life, which had lasted twenty-one years so far, that I hadn’t done that.
I didn’t know it at the time, but I was paying attention. I was not hoping I would learn how to do it, or despairing that I might not learn how to do it. I was unaware that I was learning or practicing or doing anything.
I was unaware I was doing anything except nothing.
Intimacy
One day in Oncology Outpatient, I sat with a woman who was having a bag of blood transfused. She beat me diseasewise — she had cancer — but I beat her linewise, because she had a slim little Hickman and I had my double-lumen monster.
She showed me her bald head under her brown wig and said she liked to shampoo the wig in the shower as if it were her hair.
Her husband had planned to buy her a mink coat on the occasion of their twenty-fifth wedding anniversary, but when she got cancer, she got the coat. She called it her cancer coat. It was dark and glossy, like her wig.
And she shared that she had lost her hair four times and been in many kinds of pain, but she agreed with me that the worst part about being sick was not having enough energy to feel powerful and fast. Not enough energy to run away.
After we’d been talking for an hour or two, the woman asked me what my name was. I was glad I hadn’t suggested it first. We were ready to do it now.
Her name was Barbara.
Supplies
In December, eight months after the diagnosis, I decided I’d learn how to flush and dress my line. I still needed it. I was on my sixth month of periodic plasma exchange.
So I looked at the entry site with the bandage off, for just a moment, and that was enough progress for a few days.
But I got better at looking at the site, and my visiting nurse made me a booklet of three-by-five cards, tied together by a white string in the top left corner, that explained in steps how to flush and dress the catheter.
Even if I learned how to do it, my nurse would still have to visit me at school each week and look at the line, just to make sure nothing was wrong that I hadn’t noticed.
I was as excited about learning how to care for my central line as my nurse was about visiting me at Harvard.
On my Nursing Visit Summary from December 21, 1995, Fran wrote:
Pt uses excellent sterile technique for flushing line. She also uses excellent technique for dsg Δ. Has some difficulties c
applying Tegaderm. Pt continues to feel stronger. One or two more f/u + pt should be independent c care. Next visit 12/23/95.
On December 23, a different nurse wrote:
This visit to f/u apheresis care. Pt performs flushing + dsg Δ s error. She is very meticulous. Can be independent c dsg Δ.
I’d go back to school with enough medical supplies so I could care for my line whenever I needed to. This is what I brought:
1 large red biohazard container; 10 cc syringes; 5 cc syringes; 3 cc syringes; saline vials; heparin vials, vial spikes; needle covers; interlink caps; injection caps; adhesive patches in three sizes; gauze pads; nonsterile rubber gloves; individually wrapped “sterile field” kits, each of which included 1 sterile waterproof paper sheet, 1 pair sterile gloves, 1 sterile surgical mask, sterile gauze patches, alcohol swabs, iodine swabs, adhesive compound swabs, 1 roll sterile plastic surgical tape.
I’d meet each week with my nurse and three times a month with a representative from the company that delivered my medical supplies and fetched my biohazard container when it was full. It was a lot to do in addition to my treatment schedule and my classes, especially since I was feeble and couldn’t walk far.
Every couple of days I made a sterile field on my college desk in Dunster J-22 and flushed and dressed my line. Once my two suitemates, who are still my friends, sat on my bed and watched me do it. They watched and asked questions and listened.
I saved most of the flip-off caps from the vials of saline, heparin, and other solutions I infused. Each vial of solution was covered by a sterile bladder that could be pierced by a needle that drew the solution into a syringe. And each sterile bladder was covered securely with a plastic disc, its lip covering the lip of the vial, and each disc was stamped with raised letters that spelled FLIP OFF, because you were meant to press under the lip of the disc with the top of a thumbnail until the disc flipped off onto the floor or some other nonsterile area, so that nothing touched the vial’s sterile bladder.
The FLIP OFF discs were chartreuse, pink, red, black, gray, white, or another color, depending on the solution in the vial.
I stuck the discs on my stereo and on every light switch in my suite. And I gave a lot of them to friends, who stuck them, with putty or with a small rolled-up piece of surgical tape, on their own light switches and on the switches of their electronic machines. Or in the middle of a wall.
I threw out at least a thousand discs. I wish I’d saved more of them. My old suitemates both still have a few.