Category ArchiveLife with Cancer
In many recent TV interviews the subject of patients needing to take control of their destinies regarding their proper diagnosis and subsequent treatments has been addressed.
How does one go about getting all of the information that one needs when faced with a life threatening illness?
One day you are in control of your life and in a nano-second someone tells you that you have cancer and you could die.
We are somewhat an unusual couple to have both experienced a cancer diagnosis. When I was diagnosed with breast cancer 18 years ago the Internet did not exist. There were only two books that I could buy to learn about my disease. It was at this point that I discovered that I was an activist. I researched, talked with anyone who treated the disease, knew of folks with the disease. I felt totally out of control. I could not complete a sentence without the word breast cancer in it. After many consultations with various practitioners, I decided on a modified radical mastectomy with TRAM Flap reconstruction.
While I was in the hospital I filmed a video talking about “self-actualization,” a phrase I had coined during this process. I sent it to The Oprah Winfrey Show in hopes that she would reach out to the millions of women that religiously watch her show and show them the importance of knowing their bodies and taking control of their illnesses with knowledge.
My doctors told me that because my tumor was so small I would not need chemotherapy. Lymph node report was so significant they all stood out in the hall, drawing straws as to who would tell me. Six months of big guns, losing my hair, trying to run our newly-formed PR business and care for seven children ages 6 through 23 took all of my energy.
It was years before I would ever plan anything longer than three months. My oncology visits were every three months and those would determine my life span. Every time that I would have my blood drawn I would be conscious that my destiny was in that vial of blood. I fully recovered and at this point considered “cured.” My husband, Larry wrote a book, When the Woman You Love Has Breast Cancer. It is an emotional support book for men who are dealing with wives or lovers with the disease.
In 2000 Larry was diagnosed with prostate cancer. His diagnosis sent me into a memory tailspin dredging up all of my old emotions and not being able to look at his cancer clearly. I was able to gain the control I need and went to work on research.
Because of the Internet, I was able find boundless helpful information for us. The physician who had diagnosed him was far too cavalier in his approach. Surgery was his only option, which could leave him incontinent and impotent. We had both done far too much research to not go forward with consults to determine other avenues of treatment.
Two consults in Michigan, one in California, one in Miami and one in Seattle. His choice was to go with the physician who had pioneered Brachytherapy in the United States.
Prostate cancer I found to be a much more political arena. Depending on the doctor’s expertise and experience is what they recommend. Many new treatment modalities are there for men. Larry’s experience with his prostate cancer led him to write his second cancer book, Prostate Cancer’s Emotional Maze: Forging Your Way.
Unlike for women the age-old “Slash, Poison and Burn,” advancements in the treatment of prostate cancer continue. In 18 years I have said goodbye to far many women dying with breast cancer.
This is just meant to be a starter discussion. Everyday people are diagnosed with heart disease, rare disorders, Parkinson’s, Multiple Sclerosis and others. This is your life, not a dress rehearsal and you have to take control of it as best you can. Information is out there and although your treatment provider might not like it, he/she will respect the fact that you are an active participant in your disease treatment. As hard as it is to do, try to put your life in perspective. There are diseases that are far worse to deal with then yours
Be self-actualized and always have an advocate to clarify what is said to you.
Posted by Sandy