Thursday, July 30, 2009

My Survivor Guilt

In late 2006, I was diagnosed with a rare form of cancer, Pseudomyxoma Peritonei, or PMP for short. PMP is a rare form of abdominal cancer, free-floating cells which grow in size and block the transfer of fluid throughout the abdominal cavity, and when the cells metastasize the cancer attacks multiple internal organs, either through . The nature of the cancer is such that normal warning signs simply do not appear; the only early warning signs of PMP are high blood pressure, weight and water gain, and sluggish body movements.

Those signs are also symptoms of simply being overweight, which is far more common and far less serious. Consequently, victims of PMP usually become aware of the cancer only when it begins to attack internal organs, at which time the chances of survival plummet. A study by the National Institute of Health said PMP patients have a 1-year survival rate of 98%, but a 5-year survival rate of just 53%, and a 10-year survival rate of only 32%. That study is a bit dated now, but it does give you a sense of how serious this cancer is to the people who must fight it.

An account of how one patient in Canada fought PMP may be read here. And I applaud Steve's courage and candid account of his fight.

In short, no one really knows what causes PMP, why it floats around loose in the abdominal cavity, what causes it to go from relatively harmless to aggressively life-threatening, or why some cases are discovered early but most only when it is too late. PMP is a damnable thing to have to face.

And this is why I feel guilty. I went in to M.D. Anderson yesterday for more tests and evaluations, and today I spoke with Paul Mansfield, the doctor who is in charge of my case and one of the top four or five experts in PMP. My tumors have not grown for more than two years, and all in all things are going very well for me. So well in fact, that I began to wonder if I had not been misdiagnosed, that maybe I did not in fact have cancer. Dr. Mansfield, along with the Colorectal Cancer team at MDA, assure me that I do indeed have PMP, but for me the cancer is strangely quiescent, not growing or making any signs of threat to my health or well-being. The cancer is not gone, but it’s not attacking me either. It’s like walking past a neighbor’s house every morning, and a gun is always pointed at me but never fired.


Why do I have a cancer that most people have never heard of? And why have I been blessed by having a cancer that only threatened me for a short time, never actually putting my life in real danger, when so many others are killed by the thing, or put through months of hellish suffering?

I never deserved to have cancer. At the same time, there are many people with cancer who deserved my good fortune far more than I do. I hate the trips to MDA, because I almost feel that I have no business being there, next to people who have suffered so much because of their cancer, while mine has cost me so little up to now. I know in my head that I should be grateful, especially for my wife and daughter who worry about me and who had a much harder time when I had my last operation than I did. But in my heart I do not wish to suffer, but I wish I could help the others suffer less – it feels wrong to be so helpless to help the others.

I stopped writing to my PMP Patient forum. I could not bring myself to write about my health and well-being, when so many of my fellow patients were suffering from slow recuperation, and so many lost their battles.

So damned many.

I don’t know why I have been spared. I don’t know what to do.

M.D. Anderson has started a study of the disease, having received permission from an Institutional Review Board (IRB) to do so, and I will be participating with whatever I can contribute. At least I can feel like I am doing something to help, though it’s small steps in a long journey.


denise said...

You are so fortunate...
We will pray it remains inactive. Anything you can do to help others would be appreciated I am sure.
God bless you and your wife and daughter.

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