Thursday, September 07, 2006

Having Cancer: A Full-time Job

Having a cancer diagnosis is a full-time job, I've decided. I shared that observation with a nurse friend a few weeks ago, and she said that she tells her advanced nursing students exactly that about having a chronic illness. And here I thought I'd had a new insight!

Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.

Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.

In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.

In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.

However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.

So, lots to read, lots to think about, lots to learn. A full-time job indeed.

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