I was diagnosed when I was 33. Before my diagnosis, I didn’t experience any out of the ordinary symptoms. In hindsight, there was one symptom—I was exhausted all the time. But I was working two jobs at that point in my life. I was a benefits manager for a large hospital and working part-time for my dad’s hot dog business. I should have been tired.
But then I found a large lump on the right side of my collarbone. A needle biopsy was performed indicating a benign mass. Good news.
However, the mass grew in size (about 4 cm in length) instead of disappearing. The next step was a surgical biopsy and a diagnosis of Hodgkin Disease. I thought Hodgkin’s disease was for men between the ages of 18 and 25 but I learned there is nothing typical about cancer.
Before I knew it, I was getting ABVD chemotherapy, radiation and an autologous stem cell transplant. None of the treatments were strong enough to kill all of the cancer. Next in line was an allogenic stem cell transplant, but I needed a donor match. I will never forget the “smirk” on my physician’s face, the joyous dance around me as he told me that my oldest brother was my perfect match. Joey was a 10 out of 10 match! He was going to be my stem cell donor. I received his stem cells and after 100 days of isolation and fighting with all my strength, a CT scan indicated I still had cancer. My brother’s cells worked with the cancer cells instead of fighting them.
“Value your health and take part in your health care now. It makes a difference.”
I have been waiting to hear the acronym “NED” for no evidence of disease. I promise myself, my family, and loyal friends that I will hear it one day. I continue to put my body through the test. I have received all chemotherapy known to fight Hodgkin’s, radiation to my spine, clinical trials, and the list goes on and on. I’ve had blood transfusions and/or platelets almost every other week—I wonder where do they go? I have had my bad days too – my desperate moments; tears racing down my face and the worst side effects anyone could imagine. I will continue to fight my cancer until I hear NED.
Through it all, I surround myself with a very supportive and loving family and friends, and on many accounts I have been told that I am an inspiration to all that I meet.
I know my body more than ever. I am aware of my health. I participate in the conversations with my physician; ask many questions about my current treatment, as well as searching out any new medicines. I share my experience and knowledge with other cancer patients and caregivers. I have recently developed a carrier for a Hickman Catheter which is dedicated to my brother Joey named the Joey Pouch. I am living a productive quality of life “with cancer.” Learn from my journey. Value your health and take part in your health care now. It makes a difference.
Symptoms
- fatigue
- lump on collarbone
