Marisette Edwards-van Linden van den Heuvell

Gayle King narrated my life

Recently I overheard someone say that they wanted Morgan Freeman to narrate their life. How cool would that be? I thought. Then I realized that I’ve already had someone narrate my life, in 1991. Gayle King (famously Oprah Winfrey’s best friend) was the host of the show Cover to Cover then, and the show sent producer Susan Dutcher to our house to film us in our native environment. When the show aired, it was Gayle King who narrated my story, saying my name as if she knew me. Susan sent me a VHS tape and a note to let her know when the book comes out.

Well, the book, Tiger in the Dark, comes out soon – tentatively scheduled for end of November. I can’t find Susan Dutcher, though. I’ve tried.

Anyhow, I was looking for this picture:

Chemo head

Chemo head

It was the only picture I had of my bald chemo head. I seem to have lost the original, but through the miracles of current technology I could play the video of the Cover to Cover show and grab this image. It’s fuzzy, but it gets the point across.

That was almost exactly thirty years ago. I have been reliving that time a lot because of the 30 year anniversary, which is why I was looking for the picture.

 

I was fighting for my life. I was deliberately being poisoned for six months at a level hopefully calibrated to kill the fast growing cancer cells without also killing me. My stomach lining, mouth lining, blood cells, and hair follicles, which also grew fast, were considered acceptable losses. I guess it was worth it, because I’m still here today.

But it’s hard to tell why I’m still here. It could have been the chemical warfare. Or the surgery and radiation. Or the raging strep infection that killed my daughter. The basis for modern immunological treatments of cancer is often attributed to Dr. William Coley.
Coley’s daughter founded the Cancer Research Institute to further her father’s discoveries. When I first read about “Coley’s Toxins”, I was struck by the similarities between my own experience and the patients who inspired Coley’s research. After seeing patients who were near death from sarcomas go into complete remission following severe infections, Coley tried to create such infections similar to chemotherapy – strong enough to kill the cancer, but not so strong as to kill the patient. He met with mixed success, and at a time when radiation and chemotherapy were emerging as more easily controlled treatment options, interest in his work faded. I wasn’t treated for my sarcoma with an infection, but I did spontaneously contract one – a serious one that killed my infant and was found invading my placenta. I’ll always wonder if it was that, and not the conventional treatments, which accounts for my continued existence today.

Now, thirty years later, could my experience serve as an inspiration? Part of me completely discounts that idea, but then I remember being wheeled into the operating room for the emergency cesarean section that was meant to save my daughter’s life in the face of this raging infection. A nurse stood at the end of my bed, picked up my chart, and said, “You have sarcoma? I had that 25 years ago. Does that make you feel better?” Hell, yes it did! Long term survival may not be an accomplishment one can take personal credit for, but it most certainly is an inspiration to someone who is at the start of that frightening journey.

There are other ways I’ve been told I inspire people. Personality and genetics aside, there are some things I’ve worked hard for that I feel proud of. Mostly because they were scary, or risky, or hard, and I pushed past those barriers.

After I finished chemotherapy, I decided to live as if I were cured. I went on to have two healthy sons and raised them up into fine human beings. They are now out in the world doing things that inspire me. Life is good.

In the process of growing these babies post-chemotherapy, and working full time with small children, I gained nearly 100 pounds of fat. This was not the person I wanted to be.

Then I learned to row. (Yes, I first learned when I was 100 pounds overweight, so if you want to try it, no excuses!) I tried to lose weight solely by exercising six hours a week and eating right, but after a year I lost only 8 pounds and then got sidelined by a back injury. I decided to risk gastric bypass surgery. It was a success for me, and I lost 110 pounds. Over time I gained some back and I still have to work really hard at keeping it off, but 13 years later I’m still 90 pounds lighter than my heaviest self.

I stayed with the rowing, because I enjoyed it so much. It’s a sport I can be passionate about. It’s easy to learn but difficult to master (even though those of us who row competitively after college are called “masters”). There’s something so magical about the mixture of power and grace that four or eight people must achieve in unison to really move a boat well. The magic can happen at any time, but it’s really infrequent, and I keep going back for more on the off chance that this will be the time it happens again. In this way I spent 15 years slowly moving along a continuum from adult novice rower to athlete competing in national events. Every time I complete something I thought I couldn’t do, somehow I end up wanting to up the ante and try the next bigger thing. Finishing my first 5k race in the 12th of 12 boats, the last to finish before the race was called for horrible weather (affectionately called the “underwater Head of the Ohio” regatta), just made me want to do it again and maybe finish not last. Participating in two such races in one day made me want to try the 20km/13.1 mile Wye Island Regatta. Getting a first place medal in that event made me want to try the 30k Vogalonga in Venice, Italy. That took a year of arranging but I made that happen. Then I went to San Francisco and saw all that water under the Golden Gate Bridge, and it seemed like a good idea to row under that as well. So I entered the Open Ocean Regatta and rowed a single scull from Sausalito through the terrifying currents under the Golden Gate Bridge to Point Diablo in the Pacific Ocean, back under the Golden Gate, to Tiburon, and back to Sausalito with dolphins joining me part of the way. I finished dead last but first (of one) in my event. For me it was just about the experience, but I took the medal anyway. You get the idea… Reaching one goal just sets you up for the next, slightly more difficult goal.

In my professional life I have gone after the roles that would give me satisfaction over those that would make me “successful”. I spend nearly a third of my life at work, why would I not aim for that time to be as personally fulfilling as possible? Somehow I still ended up reasonably successful. I had always wanted to travel for work and got the chance when I was asked to help out on a project in San Francisco. Having just moved into the house on the water that I always wanted, I negotiated that the company would provide me similar housing in San Francisco. That’s how I ended up spending 5 months living in one of the famous floating homes of Sausalito.

Now I’m about to publish a book, and I have several more planned. More stretch goals.

You’re probably thinking it’s about time I got to my point. It’s this: to have a life worth narrating, you need to experience it fully. To experience it fully you need to figure out what you want and set your sights on it. Focusing on that may be helped by having a brush with death at an early age, but it’s never too late to start aiming for the life you really want. Once you start aiming, you will see ways to hit your target. And then you’ll notice the next target.

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