My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, February 2, 2009

Moving Forward After A Cancer Diagnosis

My cancer diagnosis, especially one with such a grim prognosis, had some effects on me I didn't anticipate. I initially wanted to fight, to survive, to seek the best medical care, to defy the odds...but deep down I knew my odds of survival were small. While it was an advantage to me that I was a health care professional who knew the questions to ask and the places to look for medical research and treatment, I'd also spent two decades watching most cases of disease follow their predicted paths in statistical research. I believed in statistics. I loved science and research even before I was a nurse. I'd learned from and worked using statistical information for years. I believed in published science. And statistically I knew I didn't have much of a chance of surviving.

So while I was struggling to fight, I was also preparing for my possible eventual demise. While part of me was preparing to live, part of me was also preparing to die. I was very realistic.

The preparing to possibly die showed up in a few ways. I'd wanted to play piano since I was about 5 years old but had never had the opportunity. When I was about 28, a friend was divorcing and selling a used piano. I was living alone and had the cash, so bought it. I began taking lessons at age 29. I didn't want to sight read music, that seemed too much like typing and not creative enough, so I did a very poor job of improvising Edelweiss, played it for my music teacher and told her that was how I wanted to learn to play. As it turned out, the teacher loved to improvise, but never had student who could or wanted to learn how. She and I hit it off immediately. I learned to improvise piano during the era while I was pregnant and raising infants in a hit or miss sort of way. She taught me improv, and I developed my own style and even began playing publicly. It was what I loved to do most. My teacher became like family to me, another mom, and we connected musically. We shared notes and intuition and ideas for musical arrangements...and the food she made me. We were kind of soul-mates. Thanks to her I'd arrived at my piano playing dream.

But after my cancer diagnosis, I'd sit down at the piano and was unable to play, I just couldn't. It seemed pointless. It was my dream, one of my best parts of being alive...and I couldn't do it.

I also lost the ability to believe in the future, to follow dreams. I lost the ability to say the words "next year" or "next month". I couldn't make an appointment for a six month dental cleaning. All of those things implied a future I didn't believe I would have. I couldn't commit to anything.

Everyone felt I had to think positive, to believe I would beat the disease...but deep down I believed in the medical science. I believed the statistics. I wasn't "thinking negative", I was just doing what I always did as a medical professional, accepting the published medical literature.

But at some point I decided to pretend I was going to have a future anyway, even though I was skeptical. I had to make peace with the possibility I might not survive, but I had to also deal with the fact that while I was alive I needed to keep living. So I tried to move forward, I tried to live more than one day at a time. I tried to live like there might be a tomorrow just in case there was so I wouldn't have wasted a today.

I started playing my piano again...even professionally at important halls for big events. I started training, even while on chemo, for a future bicycle century of 100 miles in a day (I did finish that successfully 6 months after I finished chemo). I committed to taking over and running a local soup kitchen. I started doing other things while I was still in "cancer limbo". I started doing things I'd always wanted to do, like backpacking. I tried to do things that would make a difference in the world. I decided to make myself move forward, to not waste whatever time I did have.

Now I've survived long enough that I feel less in limbo (FYI, I felt in "limbo" for several years, but the feeling never totally leaves). But I've continued to make a point of taking on new activities, new challenges and new ways to meet people as I've moved along my cancer journey. I joined a new church. I joined a Toastmasters Club a few years ago as a way to help myself grow and to meet new people. I'm running now with a running partner who seems to be a kindred spirit...she can improvise piano too! I've recently started taking a martial arts class that's teaching me a lot and introducing me to wonderful people. I founded my non-profit organization. I've traveled to New Jersey, Tennessee, Pennsylvania, Kentucky, Maryland,Washington DC, Wisconsin, Florida and San Diego in the past few years. I'm going to Colorado in April, maybe out of the country in November.

I've learned through my cancer experience that none of us is promised tomorrow, but even when our tomorrow is very unsure, when we are walking on very thin ice in our lives, we need to make ourselves keep living...we need to keep moving forward. Even when it's hard to move forward. Even when life feels uncertain, even when it feels unsafe to look to a future. It's hard, but who knows, maybe in some sense it even helps to keep us alive. And then at least if we survive, we'll have some thing to show the of all of the time that we spent living in limbo.

Living with a cancer diagnosis is different from living in the "before", when we took tomorrow and so much more for granted, when we didn't feel so vulnerable, when we didn't have to think so hard about so much.

But I think in the end, having traveled our journey....we are forever changed and are stronger and more accepting of adversity. We have a new reference point to move forward from. We just need to keep moving forward.

1 comment:

hemant Sood said...

Thanks for sharing your lifestyle. Your article is very supportive who are suffering form cancer. You just wanted to tell”enjoy every moment “and always fight