Children’s Tumor Foundation: Tell us a bit about your diagnosis and your story of NF.
Joel Cadman: I found the first nerve tumor about 40 years ago on the back of my left upper arm. I had it removed in an in-office procedure in the mid-80s. Over the next decade, I found another tumor on my left hip along the iliac crest. I had that one removed in an in-office procedure in the early 90s. It did seem a little odd to have had 2 neuromas, but the treatments were with different doctors on opposite coasts with a decade in between, so the pattern wasn’t recognized.
After about another 10 years, I began getting shooting pains and aching in my left foot. I had also noticed a lump behind my left knee. I went to a sports doctor to discuss the pain and he was the one who made the connection between the lump on the back of my knee to the pains in my foot. He mentioned surgery but warned of the risks of operating on the nerve (Peroneal) which included the possibility of permanent “foot drop.” I decided to wait. Several more years later, the pain kept increasing to the point where I was being woken up by severe shooting pains. At that point, I decided to go ahead and take the risks of having it removed. The removal did indeed cause foot drop but I was fitted with a carbon fiber foot brace that supported my foot and allowed me to run once I had healed well enough. I used that brace for over a year until the foot plate broke off some 15 months after having started using it. By that time, enough nerve regrowth happened that I could run again without it.
During physical therapy after the 2010 surgery, the physical therapist found another tumor deep in the calf muscle of that same leg (I had that one removed in 2016). Based on this discovery, my neurologist ordered MRIs of my entire body to determine how many more there might be and to see if any were in any especially problematic areas, such as acoustic nerves, etc.
Fortunately, there weren’t any on the acoustic nerves but they did find more tumors. The most alarming discovery one in my neck was that if it grew too much it would cause me to lose the ability to chew and swallow, among other potential issues. Based on the scans and other info about the tumors, they diagnosed my disorder as schwannomatosis. My neurologist noted that the worrisome tumor may have been there since birth and we only became aware of it because we looked. More than a decade later, it hasn’t caused any issues so far.
In recent years, I’ve found out that two of my siblings have had NF tumors removed, as well. And, when I sent out my first NF Endurance fundraising email a couple of weeks ago, I learned that one of my cousins also has had them removed, so it is very much a family/genetic issue.
How did you get started with running?
I began running on my own (not including “required” running in school gym classes) in 1976 after seeing the movie “Rocky.” The movie inspired me to try running to see if I could lose weight. Since about middle school, I had been overweight. The movie truly inspired me to try to transform myself. I had done weightlifting in high school, so had experienced the exercise and training can really help change one’s physique and to become healthier.
The first run I did, it tried running around the block in our suburban Southern California neighborhood. It was less than half a mile, but I couldn’t run the whole distance without stopping. I ran again a few days later and found I could get closer to completing the loop before I needed to walk. Over the next few weeks, I finally could complete the loop without stopping. As time went on, I felt so good when I did the loop, I still had energy to keep running, and then did two loops. I continued until I would do four loops without stopping. All the while, feeling stronger and lighter. I really felt (and could see!) the changes happening and was amazed by it. I realized I could transform myself both physically and mentally. That was a life changing lesson that I’ve benefited from having learned to this very day.
From those early days, I have incorporated running into my life ever since. I did go through some periods when our kids were young when I got away from the habit, but since 2009, I’ve only stopped when I’ve had to recover from injuries and such.
What meaning does the NYC Marathon hold for you?
In my first 25 years living in New York City, I was usually aware of marathon day. It always seemed like a wonderful event for what must have been “superhuman” people. For most of those years, I never would have imagined I could have run any marathon. But when recovering from a tumor surgery in 2011, I bounced back more than I had expected and began increasing my mileage for the sheer joy and gratitude to be able to run at all.
A friend and colleague who had run several NYC marathons encouraged me to try a 4-mile NYRR race in Central Park in the spring of 2012. A few months later, I ran my first half marathon, the Brooklyn Half. This same friend told me about being able to sign up with a charity to gain entry into the NYC marathon, so I joined Team for Kids. That was for the 2012 marathon, which was cancelled due to hurricane Sandy. I ran a very small marathon in Bucks County, PA two weeks after the NYC marathon was supposed to happen, so at least my training didn’t completely go to waste.
2013 was the year I finally ran the NYC marathon. It was the experience of a lifetime! People had tried to describe how it felt, but actually doing it was among the most amazing experiences of my entire life. The energy and support of the crowds was and always is unbelievable! I have run it every single year since then (virtually, in 2020, of course).
It has continued to be among the best experiences of my life, year after year.
Why did you decide to join the NF Endurance team for this year’s race?
I decided to join the NF Endurance team for two reasons:
First, I had learned of NF Endurance several years ago (maybe from my neurologist?) and right away thought I would like to perhaps help with fundraising at some point.
Second reason is that I wasn’t able to complete the NYRR’s 9+1 program requirements for 2022 due to being upstate during the pandemic, but I still wanted to run the 2022 NYC marathon. I considered several charities including “Team for Kids” and one dedicated to pancreatic cancer, as I lost a brother to the disease last year. But I realized running for NF Endurance would give me a chance to help out a very meaningful cause in some small way, so it seemed like a “win/win” situation!
What keeps you going when the going gets tough?
One of the most important things for me is to keep in mind how extremely important general health is. To me, it is one of the most essential elements of both training and life. Focusing on the goal of overall health and being aware of how important it is to work to maintain it is what helps me deal with the low points and challenging periods.
I’ve had a wide range of health issues in the past ten years (treating and training with asthma, several surgeries, a debilitating bout of Lyme Disease, dislocated shoulder, torn rotator cuff and surgery to repair it). After each of these health challenges, I was amazed at how my body would heal and overcome the issue. It usually requires a lot of patience, but the patience has always paid off.
Keeping my eye on my long-term goal, whatever it is. Training for marathons for a decade now has taught me many life skills that have translated to all aspects of my life. An example is the idea of process and breaking down goals, training and experiences into bite size pieces. In the past, I would get overwhelmed when I thought about a challenging task ahead of me. Now, I am in the very thorough habit of breaking things down to manageable, smaller actions that build toward the larger goal. Using a training schedule (and sticking to it) forms the core of my training approach. If the weather is frigid, or very hot, I do everything I can to make sure I’m properly and safely prepared.
One day at a time! If I’m having trouble on a run, I try not to beat myself up and understand that just getting out there is a success.
Also, sharing running experiences/comparing notes with other runners is a great source of inspiration and information. Nobody likes to talk about (or hear about) running more than runners!
Is there anything else you’d like to add?
I am grateful for the opportunity to run with the NF Endurance team!! I’m thrilled to help out the cause in some small way and hold out hope that more research will ultimately help to find better treatments or even a cure for the disorders.
If you would like to join the NF Endurance team, please visit nfendurance.org.
