Wednesday, October 22, 2008


I've developed a habit of late. When there is something scheduled that I really don't like, I think of having completed it and then knowing that in the total picture of my life there is one less of it that I still have to endure. One less round of chemo to go. One less PET scan. One less blood test. One less trip to the doctor. It's comforting somehow, though I suppose a person would have to be in the midst of battling cancer to understand why.

The medical demands can pile up. One day I counted all of the things that my doctors have told me to do each day. Twenty-eight. Some take minutes. Some take hours. There is something inherently unacceptable about the idea of doing a list of medical stuff each day so you can live one more day to do a list of medical stuff. A person has to have a life! So sometimes I just opt out.

Yesterday I opted out of wearing my sleeve.

A sleeve is something that is used to treat lymphedema, which develops when lymph nodes are impacted by cancer in one way or another. My left arm is affected. It's swollen because too much fluid accumulates there and the lymph nodes don't shuttle it away. That is typically the result of radiation that destroys the nodes, or else the result of the nodes being removed. In my case neither scenario explains why my arm is swollen. The doctors wax theoretical or remain silent when I ask the question.

In any case, I'm supposed to wear a compression sleeve during my waking hours. This is a compression sleeve. No big deal--right? It's annoying for only about the first 30 minutes of wear. Then I forget I've got it on. When I first started wearing it, my hand swelled up like a balloon. You know those clowns invited to children's birthday parties who make little animals out of balloons? My left arm and hand looked like something they had created. The solution for that is wearing a compression glove. You can see one of those at the above-linked website, top row far right.

Try to imagine cooking with one of those. Or washing dishes. Or doing laundry for that matter. We won't even talk about gardening or changing diapers! I put the thing on at the medical supply place, and promptly told the saleswoman that it wasn't going to happen. She suggested a gauntlet (covering for the wrist, hand above the fingers, and a thumb, but no fingers). It was more practical than the glove, so I agreed. I had it with me last Saturday on my Red Hat train ride through the Cuyahoga Valley National Park. It was in my pocket. It wasn't there when I got home. So much for the $60 gauntlet. Until my hand swells up again, I'm not even going to think about it.

One of the reasons why my hand is not swollen right now is the lymphedema pump--my latest livingroom accessory. Here's one. Think of a big blue sleeve attached by multiple cords to a motor. They don't show the cords in the picture. No one would buy the thing if they did. It really looks like a predatory sea creature that is preparing to eat your arm. The idea is to start squeezing at hand level, then work progressively up the arm until the pressure reaches shoulder level. Theoretically this pushes the fluid out of the affected arm. It does help. My hand no longer swells up and I can wear my wedding rings again. The downside is sitting there waiting for the results to happen. Hour by hour. A person can't blog or answer email with one arm in a compression pump. A person can't scratch the itch on the nose and still hold onto the book. Nothing's perfect. I keep telling myself, one less time I have to do this in my life every time I've completed a session.

I started out with three sessions per day. When the time crunch came, I got down to two. The other day I didn't even get one accomplished. The trick, I guess, is starting over each new morning.

As of yesterday I've completed the second round of chemo (well, technically the third, but we won't count that aborted attempt last spring). This one was six months long and was done in 1-month cycles of 2-weeks on, 2-weeks off. I'm convinced that the reason for the off-weeks is that the medical insurance goes up if you kill too many patients. This round consisted of three pills a day during the weeks-on, plus an IV once a week. It could have been worse. I could have had diarrhea for the whole six months instead of just for the last cycle. Probably couldn't have been much more tired than I was, though. Some people suffer nausea with these drugs. The only time I did was when I forgot to take the Prilosec for three days running. (With 17 medications to juggle, what's one more or less--until the results take hold.) Each time I got the IV, I knew there was a day of exhaustion coming. Just never knew when it would hit. Last Sunday it hit when I started to get dressed for the day's planned activities. I had to opt out, and spent the day in the recliner.

Then there is the hair loss. When my oncologist and I were determining what drugs to use in this chemo cycle, she asked if I had a request. I requested to keep my hair. "Ok," she said. "This drug won't cause your hair to fall out. It will thin a little, but you have nice thick hair." Uh-huh. I do still have hair. It has to be combed carefully to cover the bald spots. Sort of like the balding man with a comb-over. But hey...she didn't lie exactly. There is hair all over my pillow each morning. There is hair all over my clothes. The bathroom drains are all sluggish now from the hair build-up. There is hair on my grandson. There is hair on the kitchen counter. There is hair in my food. For a while I wore my wig. It kept my hair in check. Then I nearly shaved it off. This morning I glanced in the mirror and concluded that I was in-season for Halloween. I look like a witch.

On Monday I had the PET scan. The PET scan determines where the cancer has migrated if it hasn't disappeared. From this my oncologist decides what course of treatment is next or if I get a reprieve for a few months. I had been getting them at a regional center until this one. The regional center has closed. Maybe it was the little brown room that did it in. The technician who ran it believed that the radioactive stuff they shoot into your veins needed a quiet time in a brown room, in semi-darkness, sitting in a recliner and doing nothing for an hour in order to work. Sort of felt like being buried alive. The walls had leaves in bas relief. Brown leaves. In no identifiable pattern. I used to try to count them to relieve the boredom. This hour was followed by an hour lying on a table without moving, with your arms over your head or up in the air. My sanity survived via the rosary during this endurance test.

Monday the combination PET/CAT scan was done at the hospital in one of those trailers that travels to where it's needed. This time, after the radioactive injection, I was allowed to read for an hour in a fully lighted room with the radio playing elevator music softly in the background, and so I was still sane by the time the test rolled around. The test lasted 25 minutes. Lie still for 25 minutes? Piece of cake after the previous ordeal. Looks like I can stop dreading the PET scan. This discovery had me walking on a cloud for at least 36 hours.

Now is the waiting time. Wait for the results until November 6 when I have an appointment with the oncologist. On my 61st birthday, no less. We all know that when I go for a blood test this morning the nurses aren't going to tell me the results, even though they got them yesterday. If God is smiling on me, I'll get a few months off. If not, I'll be going back into chemotherapy, or something worse, real soon.

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