Dear Fellow Travelers:
I’m a fan of Billy Foster. Billy is many things; a husband, parent, teacher, musician, talented individual, a person of deep faith, an inspiration, and a 17 year survivor of kidney cancer. If Billy the accomplished jazz musician had a large following in the Carolinas — I would probably organize a fan club. Billy has that effect on people; a soft spoken man who has encountered his share of challenges that seems to handle things with a degree of grace and calmness that is so often missing in those who face great obstacles. Billy and his wife Renée together form a powerful combination of that grace, calmness, and strength; their unity creates a synergy that is truly great.
Joyce and I had the privilege of interviewing Billy on the Powerful Patient a few days ago; I would encourage you to get a glass of tea or a cup of coffee (or whatever those of you really in the healthy lifestyle imbibe) and find a place where you can devote 30 min. to listen to the interview. It’s not so much what was said, or the questions that Joyce and I asked as much as it was the way that Billy answered and talked. I don’t know if it is a combination of the jazz musician and the wisdom of a genuinely gracious person that came through the microphone, but whatever it was, it was worth listening to.
We talked about the fact that after Billy’s initial surgery he had remained “cancer free” for a number of years before recurrence was discovered. We talked about a clinical trial where he had extremely good results and no one else did; his doctor even persuaded the pharmaceutical company to allow Billy to receive treatment for an extra year after the trial was stopped because of his good response. We talked about the lack of diversity in clinical trials and the generally poorer outcomes of African-Americans and other minority groups in general medical care. We asked the question; “did Billy’s good response to a clinical trial have anything to do with the fact that he was an African-American and there were only a couple of individuals of African-American heritage that were in the trial?” Naturally we did not have an answer to that question. Neither do we have concrete answers as to why people with a minority background tend to receive and have a lower quality of care and poorer outcomes in their healthcare. We speculated about the possibility that a lot of it may be due to an underlying mistrust in the medical community and the fact that the issues raised and pointed out by the story of Henrietta Lacks, the Tuskegee Syphilis Study, and numerous other less publicized events continue to color and plague the existing relationships between black communities and their medical care providers.
We could have talked for a longer period of time; Billy is an interesting person to talk to. Billy carries a sense of serenity with him wherever he goes. At a medical symposium in Chicago in 2011 many kidney cancer survivors had gathered to be interviewed as part of a project that would culminate in the book We Have Kidney Cancer: Survivors Stories. The conference also had a much larger contingent of medical specialists in the field of kidney cancer that were meeting at the same time. The survivors were taking a break preparatory to several of them being videotaped or interviewed as part of the project. In a corner of a large hotel concourse was a piano. Before long Billy and Renée had taken their place at the keyboard and soothing music began to flow. Members of the survivor project gathered round the piano within the large place filled with lights, chairs, displays and the constant moving to and fro of impersonal doctors, researchers and other medical personnel.
The expanse suddenly became smaller, warmer, more friendly and conducive to smiles and conversation. Billy the jazzman took us into another realm of existence through his keyboard and his magic. In the midst of an ocean of faceless people and objects an island of tranquility evolved. Billy and Renée dissapated the apprehension of camera and microphone shy survivors and caregivers. Even though this group had been very comfortable in developing a relationship with each other, that fifteen or twenty minute session had a dynamic impact on the group. Both Joyce and I had the privilege of witnessing and being in that experience; it was memorable.
Perhaps my posting today may seem unorthodox and strange to you; I hope it is. It was designed to be. For each of us have a desire to become comfortable even when we are dealing with a chronic medical condition, but many are never able to truly achieve that. Today Billy is uncertain which direction his medical treatment will take once the extension of his clinical trial ends. But his music, his faith, his relationship with his wife and his family and his friends will sustain and empower him. Each of us needs to establish a touchstone of strength, a place of serenity, a refuge where we can go to be refreshed and revitalized when adversity hits. By the same token, each of us needs to find ways to express ourselves to others; we need an outlet to voice ourselves. We need a way to express our frustration as well as our hopes and our dreams. We need to have that exchange so that we can appreciate and to show appreciation for the little as well as the big successes in our lives.
In the overall scheme of things perhaps the statement by Billy Foster at the start of today’s commentary should serve as a closing note as well.
Remember that you can’t control everything in life. At some point you have to accept things as they are.
The links below can provide much additional information.
Warmest Wishes – Best of Success – Michael Lawing
The Immortal Life of Henrietta Lacks
U.S. Public Health Service Syphilis Study at Tuskegee
Billy and his wife Renee at the KCA Survivor’s Project October 2011
We Have Kidney Cancer: Survivors Stories
Related Topics: Advocating for Yourself, Africa, Blog, Brain tumor, Breast Cancer, Cancer, in general, Caregiving, Clinical Trials, Conditions, Depression, Empowering Yourself, Genetic Testing or DNA Testing, Getting a Diagnosis, Healthcare Systems and Insurance, Immune System Issues, Kidney Cancer, Love, Marriage, and Children, Managing Stress, Managing the System, Managing Your Health, Managing Your Life, Mental crisis, Nutrition, Promoting Research, VHL von Hippel-Lindau, Wellness and Living with a Difficult or Rare Condition