Our guest blogger this month is Cy Ball, a retired computer software developer, enthusiastic fly fisherman, and music producer. He was diagnosed with carcinoid cancer about a year after his retirement, with a primary tumor in his intestinal area (still not located) and metastatic tumors to his liver. Cy shares his journey, and his incredible music, in his blog Cy Ball — Music.
Thank you, Cy, for raising awareness of carcinoid and neuroendocrine tumors (NETs)!
May 6, 2011, “The biopsy shows that you have a neuroendocrine tumor. It is a cancer! We are scheduling you to see an oncologist.” Those words on the phone are chilling, as many of us know. All I heard at first was CANCER. “Will I die soon?” was the first thought. It took a while to find out what a NET is and that my particular NET was called Carcinoid Tumor.
After that, there is continuous mental, psychological and physical turmoil. I read about the experts’ recommendations and find that many oncologists don’t believe those recommendations. Sandostatin injections worked to reduce the syndrome. Transcatheter arterial chemoembolization (TACE) caused a Carcinoid Crisis which endangered my life. The TACE made me very sick for nearly a month, but eased my syndrome and shrank some tumors. However, after only six months, my syndrome returned worse than ever and tumor growth restarted. Then I got sicker and had to fight for the surgery that should have come first in any case. Since liver surgery 19 months ago, my syndrome only occurs infrequently, usually when I travel. There are still two tumors in my liver and the primary tumor is not located. Other symptoms (night sweats, evening chills) occur less often and with less severity than before the surgery.
So, my story is not much different from any other carcinoid’s story. I wrote only this short version of my story to discuss how meditation helped me through those times and continues to help me.
About nine months before the initial diagnosis, I had started going to a weekly meeting involved some meditation training. During that meeting there were as many as 30 people meditating for 20 to 30 minutes. By the time I got the carcinoid diagnosis, I was still going to that meeting and meditating most days for 15 minutes at home. After that diagnosis, I started meditating at home as much as one hour twice a day, especially during the sickness caused by the TACE. Since recovering from the TACE treatment, I do not meditate as long or as often but I still aspire to meditating every day.
Mindfulness and meditation have been shown to help many patients manage pain. The pain from TACE and from the surgery seemed less of a problem to me (my perception is what counts here) and I was able to get off of narcotic pain killers relatively soon (certainly those pain killers were needed for a while!) Although I hated it and I did have at least one emotional breakdown during the sickness after TACE, I believe that it would have been worse without meditation.
Much has been written about the depression that cancer patients often suffer. We carcinoids have an additional whammy from our disease. It seems that our tumors may be producing stuff that depresses us and can cause incidents called “carcinoid rage”. Once or twice, I had a rage incident. It is very out of character for me and very embarrassing. I believe that meditation and the emphasis on being “present” and “in the moment” have minimized those incidents and enabled me to realize what was happening and control it.
I know that I was living with the depression for two years and could feel it increasing but with daily meditation and the weekly group meditation, there seemed a better ability to recognize it and live with it. It is difficult for a cancer patient to understand all the medical jargon and with our disease, it is difficult to understand what is the best treatment and what options we actually have. I believe that with meditation, I was able to better think, isolate and understand the issues and make decisions regarding my treatment. Amazingly my depression disappeared after the liver surgery and has not yet returned! I am lucky.
In the event that our treatments don’t help and we have to live with the symptoms of the disease or even when the disease progresses, meditation can help us to maintain a positive attitude and live the life that we have rather than focus the difficulties of our life with the disease.
The American Cancer Society has a good page on meditation:
The NIH has this overview of meditation and its effectiveness:
Meditation can be learned in many ways. If you do yoga, you are already learning meditation. Meditation is taught in centers around the world. Often there are free classes and you would get the opportunity to meditate in a quiet room with a number of other people. In fact many hospitals and cancer centers have begun to offer meditation classes for their patients. I find that meditation in the company of others is very powerful although most of the time I meditate at home. I use a Shambhala Meditation Center in Denver. There are over a hundred of these world wide. Probably the best way to learn to meditate is with a good teacher.
You can also teach yourself. Here is an article on how to meditate by Sakyong Mipham Rinpoche who is the leader of the Shambhala Institute: http://bit.ly/1EbNl1m
There are numerous books and videos and audios as well.
Finally, I am an amateur composer of electronic music. This piece called “Carcinoid” was composed during the time that I was recovering from the TACE treatment and still getting used to the idea of having an incurable cancer. You can hear the sickness, fear and anger: https://soundcloud.com/cyball/carcinoid.
A month later, I am much more upbeat: https://soundcloud.com/cyball/technocracy.
My full story and my music are on my blog are at: http://cyrilfb.com/.