Guilt

It's been about 10 days since the last chemo treatment, and yesterday I started feeling a little human again -- more energy, less weakness, less burning numbness in my mouth and throat, less coughing. This round was not as bad as the last one, perhaps because I was given Neupogen for five days right away.

But the days of feeling like a dishrag have gradually made me seriously addicted to lying on the couch watching CSI and Star Trek while playing Solitaire or doing jigsaw puzzles on my laptop. There's a fine line between feeling sick, and being lazy and self-indulgent, and navigating that line is emotionally exhausting in itself. I feel guilty for wasting so much time on mindless non-activities but I feel even more guilty if I do something productive, because it leads to the question: "If I can spend the afternoon blogging and filing old photographs, why shouldn't I be working at my paid job?" That guilt makes it easier to choose laziness; if I'm not doing anything but lie on the couch and watch TV, then I must be really sick. I fear that if someone sees me walking to the grocery store or weeding my garden, they'll say, "Why is she collecting disability insurance?"

Would I simply rise to the occasion if I was compelled to go to the office every day, and therefore get better faster? So many people, without insurance, have no choice, although I believe research shows that cancer patients who don't take time off during their treatment are more likely to get infections, not complete their treatment, etc.

One of my brothers, who has a terribly painful back condition, is a stoic and I think he believes that to stop working is to give in and to put oneself in the unhealthy position of having to stay sick in order to justify one's disabled status and benefits.

The truth is, I am sick, but sick is a moving target that shifts from one week, day and hour to the next. Where I am in my chemotherapy cycle is a big determiner, but how I feel is still somewhat unpredictable. I've been puttering around the house this morning and even made a cake for someone, and felt almost normal, except for the steadily increasing numbness and tightness in my armpit and breast. Then I walked to the local post office (which, I discovered to my dismay, is closing down). A walk that normally feels like nothing left me ... I can't describe the feeling: I'm not really winded, though I am breathing a lot harder than usual, but my body just doesn't seem to respond correctly. It's heavy and doesn't want to move. It's like dragging weights on my legs.

It's one thing to say I could do a couple of hours of work each day, but not all days, and another to be capable of working full-time.

At least my back is allowing me to walk, as long as I take the NSAIDs; that's a huge improvement. I've been taking note on the couple of recent occasions when I've sat in a restaurant reading a book that I can't sustain that position for more than a short while before my shoulder blade begins to burn and ache, and I really wonder how long I could sit at a desk and copy edit a magazine.

Anyway, I must try not to worry about others second-guessing my level of illness. It reminds me of the days when I had severe sciatica, especially in my 20s, when I could easily run for the streetcar, but once I got on could not stand in one spot without terrible pain and sometimes came very close to begging someone to give me a seat. No one would have done so, of course, after watching me run for the streetcar. Disability is not easy for anyone to judge, sometimes even the person who's disabled.

And I've been cutting out some of the TV watching and reading books instead; just finished Love's Civil War, the letters and diaries of novelist Elizabeth Bowen and Canadian diplomat Charles Ritchie (one of those books that isn't 100 percent successful but whose last line is devastating and completely changes the way you view the whole book), and now I'm reading Barack Obama's Dreams from my Father and The Gathering by Anne Enright.

Pollyanna moments:

• My house is still cool even though it's warm outside (I have no central air, so that's crucial).
• Last Sunday afternoon, Diane and I had a lovely hour sitting on the lakeshore at Ashbridge's Bay, watching the geese and the blue water shining in the sun. But, because we cheated a little when parking Diane's car, we ended up getting a $105 ticket! We decided it was worth it.
• On my walk this morning, I actually stopped and smelled some roses!