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Why the Today Show did a piece on me

Posted Sep 28 2007 12:00am
In April of last year, Jonathan Alter, a senior writer for Newsweek and a regular contributor to NBC news, did a cover story for Newsweek with a Livestrong bracelet on the cover. Jonathan had just recovered from a rare Lymphoma and was talking about surviving and what the ordeal of chemo and recovery was like. I never write letters to the editor but I could not help myself. 1000 other people wrote him as well but he says mine really impacted him and he immediately decided he would do the TV piece for the Today Show. He also along the way got himself committed to doing the bike ride at least for the first day. Here is the full text of the letter I wrote to the letters editor for Newsweek that got Jonathan's attention:

Dear Sirs:

I am sure you are getting a lot of letters from people affected by cancer after last week’s cover story. It is great to see the open discussions about a topic that 30 years ago people did not talk about “in polite company”. When I had bone cancer in 1973 at the age of 16, some people actually thought you might be able to catch it. And certainly, three years later when it spread to my lungs, the word metastasize was not ever spoken because it was a synonym for death sentence. I credit people like Lance Armstrong, who has talked so openly about how his cancer metastasized, for making this a much more discussable topic. I am a 35-year survivor of metastasized bone cancer who lost a leg and a lung to cancer that is now “giving back” in ways that I can.

A quick tell of my story is that at age 16 I was found to have osteogenic sarcoma which was always an emergency amputation because the cancer so readily got into the blood stream. Both the amputation and the idea that I had cancer were very hard to deal with especially at the age of 16. My friends mostly vanished. I was treated like a leper. I had to learn how to balance, how to walk on crutches and how to use a prosthesis just so I could get back to my classes in high school. Walking down the main hallway in my 2000-student high school silenced the normal cacophony of the between-class hallway crush and it would look like the parting of the red sea as I walked down the hall on my crutches. As a matter of self-preservation I had to learn how to do some of my favorite physical activities starting with skiing. I so wanted to be part of the normal teenage scene so I also had to try to figure out how to get one of these wooden (yes they actually were made out of balsa wood back then) legs to dance. That resulted in a lot of crashes on the dance floors while my poor date looked down at me at her feet in stunned embarrassment. But I was making pretty steady progress on all fronts when three years later, while a junior in college at my normal every-6-month checkup, I heard the dreadful words “you won’t be going home today, we are checking you into the hospital.” It was another emergency surgery this time to remove about 2/5 of my lungs, which were the site of the original bone cancer metastasizing to its favorite new body tissue. Now that it was 1976 instead of 1973, chemotherapy had just come into clinical use so I was given a very aggressive course. Every month I got five days of four drug injections which felt like the worst hangover imaginable. I of course was bald (but kept my full beard) and was trying to continue to go to school. But the psychic blow I was about to receive was by far the worst thing that had ever happened to me. The doctor said, “no one has ever survived when this cancer metastasizes” but what I heard in my 19-year old brain was “you have zero chance of survival.” I believed him so when the chemotherapy course was over, I left home and school and became a ski bum with the expectation I would ski until I was dead. My ulterior motive was to focus all my energies on that one activity and get so good at it no one would ever say, “oh he’s pretty good…considering”.

Like many cancer survivors I was learning how to fight back. And fight I did. I managed to accomplish my goal of skiing well on one ski. I then found that spring had come, the snow had melted and I was quite surprisingly alive. I had to suddenly think about the future. At least the next six months of the future. I decided to finish school. But still not dead, I kept just working on the one next life step that was something most people considered a challenge either physically or intellectually and would barrel headlong into that. I got a PhD. I wrote two books. I got married. I had kids. All pretty normal stuff. But not for me. Each thing was a huge big deal for me and I never took any of them lightly. I started to swim and got better and better at it to the point where I could compete in major open water swims. To date at this point I have done the Alcatraz swim 13 times. I donated to someone doing the AIDS ride from Boston to New York and was struck by how impressive a feat that was. The person who then said to me, “yes, it’s a major commitment and it seems like something a person with one leg and one lung could never do” did not realize what saying something like that does to a survivor. I fought back hard against that doubt and that characterization of me as somehow fragile and limited. I got on a bike and rode it a mile. That was not too bad so I pushed to five miles, then ten and within a short time was easily even doing 25 miles. I signed up for the same AIDS ride and worked and worked through long lonely rides and extreme exhaustion of that poor left leg. But I did get ready and then I did do the full 4-day 375-mile ride from Boston to 8th Avenue in NYC.

At first I did these things for myself. I was very self-focused on what I needed to do to survive and thrive. But on a hill in Connecticut as I steadily pushed down and pulled up on that peddle over and over knowing I had to make it up each and every hill because I could not get off and walk, I started passing people. Two-leggers were walking up that hill. Some were standing on their peddles to get more leverage up the steep hills. Some were whining to anyone who would listen. But they all stopped that when I passed them. And then they would say things like “I will never whine again” or “You just motivated me to push harder”. I couldn’t ever have imagined this would happen. I was not even supposed to be here yet now I was motivating able-bodied people because I was doing something that inspired them! This is how survivors are thrust into giving back. Because we can and because without trying we set examples for people and they invest in us the right to inspire them.

After the revelation that I could and should turn these activities into something that gives back I shifted my focus to the Pan Massachusetts Challenge bike ride. It’s a 27-year old event that is now the oldest and largest athletic fund-raiser in the country. And it is also the most efficient with 99% of all donations going directly to the Dana-Farber Cancer Institute. I feel like I am sort of Living Proof of their cause. I have done their 192-mile 2-day ride across Massachusetts to the very tip of Cape Code four times so far. Over the life of this event they have raised $170 million for Dana Farber. I wish it was 10x that much because it is precisely organizations like this that produced the chemotherapy that came out just in time to make the difference between me doing that ride every year and being just another sad statistic. We are definitely making progress and with so many bright lights of progress what is being accomplished gets more exciting every year. The research is working. I am living proof. Spread the word. Help the effort. Thanks very much.
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