Professor Van Hoy writes: I experienced cancer at two levels -- personal and public.
Personal Experience of Breast Cancer
My advice to folks new to cancer, "Consult everyone; decide for yourself." I could speak at length on this subject, but for this forum I will suggest only that you keep a log of your cancer treatment.Keep a Health Notebook
I got a binder, labeled the first section Pathology Reports/ diagnoses, and put a copy of my first pathology report in a page protector sleeve in it. The second section I entitled, Questions and dedicated a different page to the responses of each person I consulted. The third section was Blood work. Ask for a copy of the results of your blood tests every time you go. That way you can chart your own progress. The fourth section was Medications and Responses. The fifth section contained a Log for each doctor. In it, I have contact info, summaries of visits, recommendations, copies of tests, billing, and any new questions for my PCP (primary care physician), radiologist, oncologist, gynecologist, and sundry labs. The sixth section was dedicated to Insurance Matters.
Consult Everyone
Which questions? My first list was crude and driven more by fear than understanding. It improved over time. Whom to consult? My best source of information was oncology nurses. They have both the sophisticated medical knowledge and the skill required to communicate it in layperson's terms. But I asked everyone working in breast cancer, including experts in other states and countries. In fact, some of my best advice came from doctors in Mexico. After asking my questions, I then tried to recap the new info so that the experts could tweak it when they heard my errors and gaps. If you're too upset or exhausted to absorb new information, you can record conversations on a digital recorder (less than $50). My other major source of information was fellow cancer patients. It cheered me to see that I could get my hair back, my energy back, my professional life back. (A note of caution: Some people experience hardships that will not happen to you. Sometimes I suffered in anticipation of something that never materialized.)
Use the Information
What do you do with the information? Identify treatment possibilities and keep them in mind as you consult your oncologist. What?! It may seem preposterous to presume to inform the professional, but it worked for me in a couple of ways. First of all, my doctor appreciated that I was pro-active and she gave me more information. (If your oncologist does not respond well to your hands-on approach, keep looking. I had to interview two before I found one who respected patient activism.) Second, I was able to shape, if modestly, my treatment. For example, I avoided Procrit by demonstrating that although my RBC (red blood count) was low, it had remained constant for weeks. When I requested that we wait until it dropped before undertaking a treatment with those risks, she agreed, though only with more frequent monitoring.
More Than a Disease
Beyond these practical tips, what else can I offer to people new to cancer? To be honest, the longer I survive, the more I realize that cancer is so much more than a disease. It has to do as much with social structure, environment, and the marketplace as it does with medical matters. There is also beauty and joy and humor and love in all of this. And tears. At some level the most powerful part of the experience are the smallest moments. For example, when Andrés heard that I was going to go bald, he fell quiet. Then he came over and said in the smallest whisper, "Mommy, I am afraid that I will be lost more now." "Why, mi hijito?" "Because whenever I need to find you I just look for your long curls."
I am writing a fuller account of the things I wish I had known from the outset, the beauty and the pain. And I am happy to share those experiences with anyone who inquires. For now, suffice it to say that for the past four years, five months and six days breast cancer has been revealing my blind spots.
Source:
Teresa Miriam Van Hoy, correspondence with Pam Stephan. Spetember 17, 2006.
