Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
There are hundreds of books about caring for someone close to you who has cancer. I have read precisely none of them. I possess no secret wisdom and claim no particular expertise in what follows. I’ve only been doing this for a little more than a year, and all I have to offer is my own experience. It that’s of interest to you, then you’re cordially invited to follow me down the orange rabbit hole and join me on the other side.
We had been married six months when PK learned she had uterine cancer. I was there when she got the news. A month later, she had a total hysterectomy, followed by a revised diagnosis of Stage III adenocarcinoma and the report, “We got out as much of it as we could, but we couldn’t get it all.” I was there when she went into and came out of surgery. Six months of chemotherapy with all its attendant side-effects and one nasty bout of neutropenic fever followed. I was there for virtually of that. A month after chemo finished, her CT scan showed that the cancer had metastasized to her lungs. I was there when those results came in. Next Monday is her latest CT scan and consultation. I plan to be there for that as well.
Caregiving is presence. Whatever else it may be, showing up is a big part of it.
The first time I was called a caregiver, my hackles immediately went up. I had been sober for more than 20 years when PK was diagnosed. I had personally witnessed on more than one occasion the kind of chaos that codependent caretaking behavior had wrought in the lives of others, and I wanted no part of that insanity. Sorting out the difference between caretaking and caregiving—as simple as that may sound—took awhile. I slowly came to understand that caregiving isn’t about emotional payback. It’s about developing enough willingness to do the next right thing regardless of how it feels. It’s about action, rather than emotions. It focuses on the other, not the self.
Caregiving is about giving, not being taken care of.
Cancer reminds me of the opening canto of Dante’s Inferno: “In the middle of our life, I awoke to find myself in a dark wood where no clear path could be found.” It’s a journey to a planet where there are millions of facts but no real answers. It’s terra incognita, the uncharted lands beyond the edge of the cartographer’s art. There be dragons there, and those dragons ask lots of questions: Where did this come from? How could this happen to us? Why her? Why me? Why us? What now? How long? Will it work? What if it doesn’t?
If you happen to live with an academic with an earned Ph.D., embarking on the quest for answers is like receiving a hand-engraved invitation to take up permanent residence in the hall of mirrors. And if you’re used to finding answers and fixing problems, living with a person living with cancer can be a short ride on a fast machine that takes you non-stop to the land of powerlessness. About all I know for sure is this: I didn’t cause it, I can’t cure it, but I can learn how to cope with it.
Caregiving includes surrendering to uncertainty and accepting mystery.
Around the first anniversary of PK’s initial diagnosis, I began having chest pains. Eventually I went to the doctor, who concluded that my heart was fine but that I was under too much stress. Choking back the obvious retort (“So what do you want me to give up, doc? The wife with cancer, or the four part-time jobs I work to support us?”), I started looking instead for small changes I could make to take better care of myself. I began eating breakfast every morning. I cut my coffee from 14 cups of regular a day to just one (plus a very few cups of decaf). I started walking 30 minutes daily. I began taking breaks, attended more AA meetings, and spent time talking with close, trusted friends to be sure I wasn’t isolating or approaching emotional burnout.
The results? PK still has cancer. But now I have more available to bring to the journey. My blood pressure is back to normal, and I haven’t had chest pains or a migraine in over a month. The truth is that we simply cannot give what we do not have. If your own boat is leaking, you’re not likely to be much help to the folks drowning around you. Walking on water is not any kind of realistic option.
Caregiving isn’t martyrdom, and enlightened self-care is essential.
As musicians go, I’m one of the lucky ones. I’m employed. I teach music theory and composition at a local university to a bunch of terrific and talented students whom I adore. I direct four choirs in a nearby church full of good people who have known me for seven years. I lead a local community choir and orchestra with the hardest-working amateurs I have ever met in 40 years doing this line of work, and who fill my heart with joy on a weekly basis. I write articles that people actually read, and compose music that gets published and performed around the world. The one constant that I rely on in all these jobs is the ability to put myself into the minds and hearts of the people I work with.
But when it comes to caring for a person living with cancer, empathy is severely limited in its utility. As much as I might like to think that I know what it feels like to stare death in the face, or deal with a future that’s unknown, I don’t. Saying, “It’s alright—I understand,” just doesn’t cut it. Providing facile analysis doesn’t offer any real comfort. Ironically, the journey through cancer is one that each person—patient and caregiver alike—walks alone, even as we travel in each other’s company. That’s the reality of it. I don’t like it. I sure as hell don’t understand it. It makes me afraid frequently, angry sometimes, and lonely often. But in the words of Mr. Gump, that’s all I have to say about that—for now, at least.
Caregiving doesn’t require empathy, just honesty.