Living As A Cancer Survivor - Discouraged & Vulnerable
Mark Everett Kelly
Mark Everett Kelly was diagnosed with Stage IV Rhabdomyosarcoma on December 12, 1990
Many things in your life cause feelings of vulnerability- people, relationships, work, job, money situation. Dealing with a cancer diagnosis is one of the most vulnerable feelings a person can experience. The confusion, change of lifestyle, added threat of death - all these things are tough to deal with.
For longtime survivors, one would think the vulnerability goes away after a while. Due to the "late effects" of chemotherapy & radiation, more survivors are finding themselves dealing with long-term issues that were unknown to the cancer community years ago.
Those who read this blog consistently should know what is coming. I sound like a broken record at times, but the battle to keep my mind void of discouragement can be a challenge.
Many survivors deal with chronic pain that creates new feelings of vulnerability. I am starting to worry about what is going to happen to people in my position.
Photo of Mark’s lymphedema this week. Lymphedema is extremely painful and surfaces in a large number of cancer survivors.
This week I have been dealing with excessive swelling from lymphedema. The term is redundant since there is no one without the other, which is what lymphedema is. I missed my radio show on Monday because I could not put on pants. Medicare does not cover the wraps, stockings, and massage that is needed.
In September of 2016, I had surgery at Memorial Sloan Kettering to transplant some lymph nodes from my arm into areas of my leg, where the swelling was most severe. The follow-up protocol called for visits every 3-6 months, along with additional tests in September 2018 to determine how much the surgery produced the desired results of reduced swelling.
The last time I saw Dr. Dayan was my 44th birthday (March 8, 2017). I no longer have the insurance that allows me to see him. The tests I was supposed to have never were done, and the seven-hour procedure turned out to be a waste of time. The swelling in my leg is just as severe as it was before my operation.
Mark and other survivors need help to survive financially. He started a Patreon page over the summer and is exceptionally discouraged that support has not grown. His weekly activities include blogging, writing sports articles, multiple live radio/podcasts, public speaking, and promoting his book. Everything Mark does is volunteer, and he and others cannot survive without financial support.
I can always be reached by email (CKMagicSports@gmail or LivingAsACancerSurvivor@gmail). Please see the links below to follow me or contact me on social sites. I welcome (need) more followers and supporters. Please do not be shy about sharing your thoughts.