Living As A Cancer Survivor - Discouraged & Vulnerable

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.

PATREON - HELP SUPPORT MARK

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. 

MARK BACK ON SPORTS RADIO 

I now do a sports radio show every Monday and Thursday from 8-11 AM EST. You can find all our shows, live and via podcast, here. 

WHERE TO FIND ME

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.  

NEED SUPPORT? 

Please reach out to me or anyone in the beautiful support groups on Facebook, Reddit, Tumblr, or other social sites.