First of all, let me thank all of you who have responded to my last blog post and for your warm and generous support. I really appreciate it. As I have thought about upcoming topics I want to write on, some are heavy and others lighter—I do have an active sense of humor, even about something as serious as having terminal illness (some have accused me a being a smartass, and I am going to do my best to keep that reputation for as long as possible). Today’s post is, I trust, neither too heavy nor too light– I hope like the matzoh balls my Jewish friends and their guests will be enjoying this evening!
This week, a wise woman in my online support group wrote in response to someone who was struggling emotionally, “Cancer not only wants to take over our bodies, it also wants to take over our thoughts.” I have thought about that a lot since she wrote it.
When you have a terminal diagnosis, it is difficult to wake up in the morning, or go to bed at night, without thinking about your disease. For people who have active symptoms, either from the disease itself or from side effects, physical discomfort only adds to these feelings. It is easy to let this become overwhelming. I count myself lucky that I have never suffered from clinical depression, which can certainly be exacerbated by serious illness. But I also realized after considering my online friend’s words a bit more deeply, that life in the moment has taken on a new meaning.
It used to be that I lived in part in the future—sometimes a year or more out. I could easily think about plans for next month, next year, even a few years down the road. This all changed when I went into active treatment. I was initially on a clinical trial (more about those in a future post) where I had to have infusions two out of three weeks. It was a Japanese sponsored trial, and, in typical Japanese fashion, had no flexibility for missing treatments other than for medical reasons (e.g. low white blood cell counts). This meant cancelling one international trip that coincided with a treatment week, and ensuring that any other travel I did was on “off” weeks. Soon, I learned that my life had also to be planned around regular CT scans –usually two to three months–to check the effectiveness of treatment.
Now, as the disease has progressed, my sense of the present has narrowed even more. I am down to weeks, days, and increasingly, moments. This is not necessarily a bad thing, in fact, in some ways it is a blessing.
A few years ago, I did an intensive meditation training called Vipassana (you can read my rather lengthy review of that experience here. ). A primary teaching is that all things are impermanent, and suffering comes from craving and aversion and attaching oneself to what is only going to pass away. While I am spotty about meditation these days, I am trying to live by this teaching and to enjoy life in the moment. For example, I have a couple of friends who have been generous about walking with me on the rail trails near where we live, an activity that picks up my spirits considerably. These glorious spring days in New Hampshire have been wonderful for this, and I hope to continue for as long as I’m physically able. Later today, Marty and I are headed to Michigan to celebrate Passover with family, and to see old friends. I am really looking forward to this and to savoring every moment (not to mention Cousin Steve and Robin’s fabulous cooking…..)
One of the most famous prayers in Jewish liturgy, which comes from the story of Hannah and her lament about being childless, is very short but relevant here: “Let me not die while I am still alive.” As I try to live these words, I wish all who are celebrating, a sweet Passover filled with memories to treasure.