I'm not living with cancer, so I shouldn't be writing this.
"Maybe you are," says the cool heartless medical intuitive part of my brain.
"No I'm not," I say.
"Maybe we all have cancer cells all the time, it's just that in the vast majority of cases they die and don't take over." It starts listing evidence.
"Shut the fuck up," I say.
My sister Grundoon was diagnosed with breast cancer nearly 5 years ago. I lived around cancer before that because my mother died of ovarian cancer in 2000, and I'm a family physician. I always have some patients with cancer. I can name them. And their families.
Cancer used to be a death sentence. If you got cancer, you died. Our culture used to be a lot more familiar with death. The Louisa May Alcott book "Jack and Jill" describes a 19 year old in a community getting a fever and cough. It gets worse. He dies. Probably pneumonia. The book is quite matter of fact about the loss and the grieving and the wondering at God's plan. Now we feel that a young death is a terrible tragedy and a horror; our culture tends to step back from those unlucky families. But death is still among us and at any age.
Cancer can now be a chronic disease. There is a proliferation of articles for primary care doctors like me, about how to take care of cancer survivors. If they have had breast cancer, we still need to pay attention to everything else. Pap smear, cholesterol, their blood pressure, and some special problems that are the legacy of chemotherapy and treatments.
A few months ago, I started to make a transition. I thought, "I am so tired of feeling frantic about Grundoon being sick with cancer." Then I thought, "I have to make the shift to her getting well from cancer." She had had a recurrence in October of 2008. More chemo, and the intellectual knowledge that it was now considered chronic. Afterwards, she was not in remission. Instead, she had "No Evidence of Disease". NED. I thought, each day that she is NED, she is getting better. No cancer. It isn't back unless it comes back.
Grundoon got frustrated about people saying "You're so brave." She said, "I'm not brave. I'm trying not to die. I'm doing what I have to and it is horrible and it is making me sick and miserable. What the hell do they mean, brave?" It's just that in trying to kill cancer cells, we nearly need to kill the host. They are related. The treatments are getting better every day and they are still often awful and horrible.
She was also angry when a book came out telling the story of cancer survivors. "They get kudos for surviving? What about the cancer patients who don't survive? Did they fail?" No, but we all know that cancer treatments are one of the worst treatments to go through. And it is terrible to think of going through one after another and then losing. It is framed as a battle, so often.
I am trying to have a paradigm shift. Cancer as a chronic disease, not as a death sentence. We all live with the risk of dying all the time. I'm commuting 1.5 hours daily and there are crazies on the road. Look at Haiti. I'm in an earthquake zone too. But I have not made the mental shift of cancer as a chronic disease.
What is a chronic disease? It is one that we can't cure and try to control. High blood pressure. Very occasionally I have someone who really starts to exercise hard and loses weight and can be on no blood pressure medicine at all. For most people, high blood pressure means medicine for the rest of their life. Heart disease, rheumatoid arthritis, lupus, depression, all of these can be chronic. We try our best to control them with treatments and give the person the best control and the best quality of life possible. I have taken care of two people with Lou Gehrig's: amyotrophic lateral sclerosis, which is lethal. Their muscles slowly fail until they cannot breathe. Congestive heart failure is lethal; I just had a very dear patient die of that, but she outlived everyone's expectations by years and years. Being alive is lethal, really. No one stays.
The difficulty with Grundoon's breast cancer is that the treatments are so miserable that it is hard for her to go through it and hard to watch. After the last chemotherapy, the average time to recurrence was 8 months. Her oncologist was delighted that she got to 9 months. "It is NOT reassuring," she said. "I'd rather party at 5 years or 10 years."
Yet I see people in all sorts of chronic diseases make the decision: they want to live. They will do what they have to. They do not back down. They choose to be treated. Life is deeply precious, even in the face of treatments that make us sick, sick, sick. Even in the face of the terrible damage that young soldiers are returning with from Iraq. Even so, over and over, I see people decide to continue with life.