“My Voice” by Dr. Stan Steinberg

Dr. Stan Steinberg - 'Survivor'

I was diagnosed with Hodgkin’s disease in 1975 after accidentally swallowing a staple. I was a freshman in college and thought I had the flu, so I had stayed home from school for a few days.  A fraternity brother had copied his class notes for me.  On Friday afternoon I sat and read the notes while sucking on a staple, which I accidentally swallowed. I called the family doctor who had me come in for a Chest X-ray, which revealed a large mass in my chest.  I was about to begin a journey that would shape much of the rest of my life; and I was uninsured to boot.

I was admitted to the hospital, and started a battery of tests. Two days later I had a thoracotomy and the biopsy was positive for Hodgkin’s Disease.

A few weeks later, I had a blood transfusion so that I could have the staging operation with a Splenectomy. In those days they didn’t have CT scans or MRIs, so virtually everything was done surgically.  I was very lucky to be in a city like Los Angeles where major resources were available. I was lucky to have great specialists who provided me with both state of the art treatment (for the time), and offered a never ending supply of optimism. My family and friends were incredible! Hardly an hour went by that I was alone in the hospital.   One night over thirty people came to visit and we had to use a hospital conference room because the hall was filled with so many of my friends and family. It was incredible!

I will never forget the wonderful feeling of fresh air and sunshine on my face when I walked out of the hospital for the first time in almost a month. I had lost 40 pounds and could barely walk half a block.
Several weeks later I had gained enough strength to start chemotherapy; a cocktail that included nitrogen mustard, a chemical weapon from World War I, and a treatment that was among the most toxic forms of chemo ever used. There were no IV drips in those days, so getting the injections was an incredibly hellish rush of a chemically induced sense of spinning; combined with unnatural metallic smells and tastes that stayed with me for years, buzzing in my ears and vomiting. I would continue to throw up for about 14 hours.  It was pretty brutal, but I managed to stay in school part time by getting my chemo on Friday afternoons.  Best to keep moving.
I arranged to have my daily radiation treatments during the summer. I would drive myself to the hospital in the morning, get my radiation treatment, and then drive home.   Sometimes I would be so sick that I had to pull over and throw up on the side of the road.  I still cycle some of those roads today. I was always a good eater and usually felt good enough by dinner time to eat.   The doctor said I was the first person he had ever seen gain weight on radiation therapy. Lots of See’s candy; still my favorite. The pot didn’t hurt either.

After 9 months of radiation and Chemotherapy I was cancer free and returned to a full schedule of school, sports and work.  Around 1979 my shoulders started to spontaneously dislocate; probably due to the radiation. Eventually I resigned myself to two more surgeries; which became three because a few years later one of the screws came loose. I had my thyroid removed in 1995 due to the long term effects of radiation (20 years later, just like the books said). I was lucky to catch it before it became cancerous. I also have an underlying autoimmune process at work; probably part of what caused the cancer to begin with. I have had ten surgeries so far and will need to have an Aortic valve replacement; also due to damage from radiation. We have been watching it for several years now. They are starting to do valve replacements percutaneously, and Cedars Sinai in L.A. has done more of them than any other hospital in the world; more good luck. It may be hard to believe, but I am actually excited about that part.

I have always been careful about picking doctors and have learned to bring a typed history and some lab results with me; it makes everyone’s job easier. I have been very fortunate to find and stay with a physician who communicates well with me so that I can participate in the decision making process. He never feels threatened and encourages me to get a second opinion when he isn’t sure of something. If you find a good doctor stay with them; it makes it easier when you know them and they know you.

I have been blessed with a wonderful life filled with many adventures. My wife (my sanctuary) and I love to travel and have plans to continue doing so. I do sometimes worry a little about being in a foreign country and usually have my wife carry some extra medication, just in case.  I always carry the important meds with me. I have never had a problem.

I have run the L.A. marathon twice, and have become an avid cyclist.  My wife and I have cycled across Switzerland and biked some of the Tour De France routes. I suck at cycling, partly because of slight exertional  dyspnea, as well as nerve and muscle damage from treatment, but I love it. (I am the Lanterne Rouge). We are currently planning a return cycling trip to Switzerland next summer and maybe Chile next fall. I would love to put together a European cycling trip for survivors; just for fun. I started riding a recumbent bike this spring.   The shoulders just couldn’t take it anymore. I have cycled two centuries on the “lounge chair” this year.  I brought it to Austin for the Ride for the Roses. It is incredibly fun and has brought back the joy of cycling.