This #MyelomaVoices story was submitted on March 9, 2017 by Rene Hicks.
When diagnosed with smoldering multiple myeloma, my oncologist told me that because I was so healthy and had such a positive outlook, I would likely die of old age, not myeloma.
Because I didn’t expect myeloma to have any real effect on my life, I didn’t even seek information about it. I remember thinking “smoldering” sounded sorta sexy – until the fanning of the embers ignited into flames of myeloma. And when my oncologist started talking about the need for a bone marrow transplant, I became a full-blown cancer patient. Cancer patient and sexy are as incongruent as you can get.
The mere mention of cancer conjures up fear. It carries a power like no other disease – it crosses all human boundaries – no one is exempt – no matter how rich or how good-looking or athletic – anyone can be diagnosed with it and sometimes be diagnosed more than once. I know this because myeloma is not my first ride on the cancer roller coaster.
With Cancer – the Sequel, I have to sit in a room with other cancer patients, wait for the nurse to poke around to find a usable vein so I can be hooked up to an IV, spend up to 3 hours getting infusions, and now I’m prepping for a bone marrow transplant. After which, I could go on maintenance with more oral chemotherapy treatment. And, heaven forbid, I may have to have another transplant. This is definitely having cancer, and myeloma is a cancer that many have never even heard of.
Now let’s rewind to my first run-in with cancer: lung cancer. I had never smoked, but I had spent many years performing stand-up comedy in smoky venues – thus a victim of second-hand smoke. They removed the lower right lobe of my lung and all the surrounding lymph nodes – no other treatment – no chemo, no radiation, no medication – nothing like myeloma.
A lot of people get lung cancer from smoking, but my situation really got people’s attention. It was the shock of hearing my story of being a multi-sport athlete, including being a ranked distance runner, and an award-winning comedian who had performed all over the world – much of the time in smoke-filled venues – never having smoked, but getting lung cancer from second-hand smoke.
As a lifelong advocate for social issues, using my ability to make people laugh to get messages across, I started speaking out for the right to clean air and against the tobacco companies, for patient empowerment, cancer awareness, and the need for increased cancer research funding. I spoke all over the country, doing Grand Rounds at prestigious medical hospitals and medical schools, colleges, and universities. I gave keynote speeches at medical, cancer, pharmaceutical, and tobacco prevention conferences. I taped Public Service Announcements that won the highest awards. I taped interviews that ran on the Centers for Disease Control (CDC) website. I lobbied on Capitol Hill and met with prominent Senators and Congressional members. I did hundreds of town hall meetings to get smoke-free laws passed. I ran workshops and weekend retreats. I gave thousands of TV, radio, and news interviews. I was on a nonstop mission to enhance and save people’s lives. My lung cancer turned into a heroic, noble cause – reaching out and inspiring people worldwide to take action for themselves and for others.
Having myeloma is nothing like that. It feels like I’m fighting cancer, not fighting to prevent people from dying of cancer. But when people ask me if I am as funny with myeloma, I tell them there’s nothing about life – good or bad – that I can’t apply humor to. If my myeloma. If my myeloma can’t be sexy, it can at least be funny. Myeloma is the least known of the blood cancers; it’s like being the red-headed step-child, having a bad hair day. However, having been a black person, “Myeloma” sounds like the name of a girl that I went to high school with. Sure, she had an older brother Leukemia and an older sister Lymphoma, but Myeloma was the popular one.
This time around, I have years of experience in successfully making people laugh while making them aware of the challenges of living with cancer, and I also possess the sharply honed skills of using funny to get funding by making the “deep pockets” laugh, but also understand the need for research funding is no joke. I don’t think it’s a coincidence that these two experiences – cancer and laughter – are universal. Not everyone likes the same music or food or books, but cancer and laughter have the power to profoundly affect the lives of everyone in the world.
**The opinions expressed in this story are solely of the patient Rene Hicks.