20411 W. 12 Mile Rd.
Voices of Hope & Healing
The Red Mohawk
Getting the cancer diagnosis wasn't easy to accept. I guess it never is for anybody though. Particularly if it's one of those cancers that you find out from reading that there isn't any real cure, and life expectancy can run from 1 to 5 years. "Damn," I thought. I've got lots of stuff still to do. I'm not ready to be sick. I don't even feel sick, and I'm a busy guy. I don't have time to waste with treatments, medicine, hospitals, etc.
As with anyone who gets this ominous diagnosis, you suddenly attempt to become an expert on the subject. You try to read, study, and learn all about your disease and hopefully stumble upon something that your oncologist may have missed in your treatment regimen that would be a quick and easy fix. "Ha," I thought. I will research this Myleodysplasia thing on the internet and in days I'll know more than my doctor learned in 8 years of medical school. As the hours and days of intense internet research passed and with excessively blurry eyes, I found myself more confused by the various stories, research, diagnosis and treatment of my particular cancer.
One thing I did glean is a lot of knowledge about various treatments and their effect on the body. I learned to ask smart questions and to take charge of my life. I was sent to a treatment center initially for an experimental type of bone marrow transplant but felt uncomfortable with this approach. I went back to my original oncologist, and we had a frank discussion about my other treatment options. (Basically boils down to "Which options give me a better chance of survival?") He referred me to a well-known regional facility that specialized in conventional BMT's.
We set the wheels in motion to begin finding a bone marrow donor since no family members were a match for me. I was getting sicker, basically feeling tired, weak and out of breath while doing many simple activities, but I had to keep working or lose my health insurance and lose my chance at the transplant. After several months of frantic searching, a donor was located in Germany!
Getting ready to head out of state to the hospital was a bittersweet moment. Friends and relatives dropped by to wish me well. I'm thinking to myself, "Are they saying goodbye? Do they know something I don't know? Do they look at me and say to themselves, 'dead man' walking?" These thoughts seared through my mind like a hot knife through butter, but I was determined to make light of the moment and relieve everyone else's stress. Since I figured I was going to lose my hair at the hospital due to chemotherapy and radiation treatments, I would allow my teenage daughter to shave my head. As a group of close friends and family watched, we sat in my front yard, and my daughter and wife began to shave my head. Then suddenly my daughter blurted out, "Dad, let's make it into a Mohawk!"
After weighing the pros and cons of walking into the hospital with a Mohawk haircut and the possibility that this could be the final fun activity that I would ever do with my daughter, I didn't want to disappoint. If this was her idea, and this is how she was going to remember spending time with her dad, then this is how it has to be. Someone ran to the store to get gel and red hair dye. My wife Lori and daughter Alysia clipped and shaved with renewed enthusiasm. My friends cheered as my fuzzy head became as slick as a bowling ball with a big chunk down the middle remaining uncut. Everybody got their hands dirty putting on gel to spike the hair and red dye in to color it.
The next day we headed out of state to Dana-Farber in Boston to begin my BMT journey. Sure it felt bizarre going through Quincy Market with a Red Mohawk. I got a lot of stares at Fenway Park from fans thinking, "Who is this middle aged weirdo?" I guess I felt the need to showoff my new hairdo with my family at my side. It was fun.
At the hospital, it seemed everyone needed to check in on the 'guy with the red Mohawk.' I don't know that I received any extra attention because of my uniquely styled hairdo, but people were always looking or stopping by my little, germ free 'bubble room.' By engaging my health care team, they quickly found out that I was an informed and active participant in my treatments. Asking frank questions, asking about medications, challenging treatments are all a part of being a proactive patient. I found that the staff looked past my appearance and appreciated a patient who had a desire to learn and understand what was happening in his body.
This month I will celebrate my 6th birthday post BMT. I still can count how many days since my procedure. I am grateful for the team who stepped up at the hospital and for my family who helped me get through this awful time. I haven't lost my sense of humor although I'm not sure I'll ever try a Mohawk again.
First appeared in Chicken Soup for the Soul, Cancer Stories and used with permission from the publisher.
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