On my way home from work one night in late January 1994, I went to a local outpatient clinic. My neck had been bothering me for a few months so I thought I would try to find out what was wrong with me.
The outpatient clinic identified a mass on my x-ray. The doctor didn’t know what they mass was so he scheduled an operation for a few days later.
I went under the knife early on a Tuesday morning and woke up eight hours later. I was told that I had multiple myeloma. I had never heard of multiple myeloma. I was told that I had a single plasmacytoma that may not become multiple myeloma. I was diagnosed with “pre” multiple myeloma.
About a year later I found out that my pre-MM had spread and I was then diagnosed with full blown multiple myeloma. A 24-hour urine analysis and blood work determined that I had no blood markers. I was non-secretory. I had a lot of bone involvement aka hot spots.
I underwent induction chemotherapy (V.A.D.) in April of ’95. I had more chemo (Cytoxan) that September and a hematopoitic stem cell transplant in December of 1995. Over the next two years I had two relapses, palliative radiation and “there is nothing more that we can do for you.”
I was young (36) and in otherwise good health so I had a difficult time thinking that I was terminal. Perhaps I was in denial…and a little angry. Okay, I was a lot angry.
During the summer of ’97 my wife did some research on the Internet and found a clinic in Houston, Texas called The Burzynski Research Institute (BRI). I knew NOTHING of alternative cancer therapy. I only knew that I had to do something about my cancer (that was beginning to really hurt). I didn’t want to go to Germany (Dr. Hans Neiper), the Bahamas (IPT), or Mexico (Tijuana).
In November of 1997 I traveled to the BRI where I began antineoplaston therapy (ANP), a non-FDA approved therapy.
I was on intravenous ANP for the next 10 months and the capsule form of ANP for another 7 months. During that 17 month period I read numerous accounts of how Burzynski was a quack, a charlatan and a purveyor of false hope. My “incurable” cancer slowly retreated and I have been cancer-free since April of 1999.
My health insurance, Medical Mutual of Ohio, deemed the chemotherapy that took me from terminal to cancer-free to be “not medically necessary.” So they didn’t pay for it.
I spent the next few years wondering if I would relapse. After all, I was told that all MMers eventually relapse and die. A lived through many short, long-term and late stage side affects from my conventional therapies. I still fear a relapse of my myeloma or a secondary cancer from all the chemo and radiation I underwent from ’95-’97.
I launched the Galen Foundation DBA PeopleBeatingCancer in 2004. I spend my time researching cancers, blogging about cancer issues and working with cancer patients, survivors and caregivers. It may sound odd but I find cancer interesting. Coaching cancer patients, survivors and caregivers has become my purpose in life, my passion.
Many cancer survivors say that they don’t want to be defined by their cancer. I feel differently. Cancer has completely changed how I think and how I live. I live to stay cancer-free. I live to manage my side effects. I want to be defined by my cancer.
I continue to remain cancer-free. It may sound trite but if you are diagnosed with cancer knowledge is power.
If you are interested in working with me to enhance your current therapies, evaluate cancer therapies and specialists specific to your needs or prevent and heal short, long-term and late stage side effects fill out the form below for a free consultation.