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.

Thursday, February 26, 2009

This Time's a Charm Book Stop #10

My blog today is the 10th stop for the blog book tour of This Time's a Charm: Lessons of a Four Time Cancer Survivor, written by Don Wilhelm. The book chronicles Don's battle with lymphoma...a long and difficult journey over several years. His journey has included several remissions that he says in the end were "intermissions" as his cancer has recurred multiple times. At the time his book was published, he had survived 4 recurrences. He is now currently out of remission again and facing his 5th battle with lymphoma.

I've read several books written by cancer survivors, and Don's book was one of the better ones. It was personal, inspiring and easy to read; I finished it in one day. What I enjoy about reading books written by other survivors is that they validate our own experience, they make us feel less alone, more understood. Don's book does all of those things.

In This Time's a Charm we travel with Don through the shock of his diagnosis, his search for an oncologist willing to be a team player, his research into his disease, his experiences with testing, chemotherapy, radiation and even a stem cell transplant as he's battled multiple recurrences...Don's been through it all.

Don has faced what all of us fear, a recurrence, multiple times. At one point he said that "not 10 seconds went by any day that I didn't think about it and worry that my cancer was coming back". Much of his book chronicles the emotional impact cancer has had on his life, and his learning to live with the uncertainty we all face. He talks about spending the summer after his transplant living what many of us do at some point, a "short term life". His was a phase of "gluttony, irresponsibility and disregard for the future". But he grows through this phase and many others to acheive a full and rich life in spite of and often with cancer.

Don's story is the courageous and inspiring story of a man living for years through a life interrupted frequently by cancer recurrences...a man who chose to explore, to grow and most of all to LIVE. Definitely recommended reading for anyone struggling with a cancer diagnosis.

Wednesday, February 18, 2009

Empowerment

I recently began running and working out several times a week. My endurance has increased greatly, I can run 2 miles now (again with short walk breaks). Two people have asked me if I am doing something different because I look better, look healthier (did I look unhealthy before? Hmmm....).

I also enrolled in a Tai Chi class just out of curiousity thinking it would be the healthful mind-body stretching exercise class I'd heard of. As it turns out, my Tai Chi class is taught as a martial art. It is the Yang Long Form version of Tai Chi Ch'uan and teaches self defense. Tai Chi Ch'uan is actually a very deadly martial art similar to Kung Fu. For a time it was banned as a martial art in China, hence it came to be practiced instead as a form of relaxing exercise.

In learning this martial art I have truly had to work to wrap my mind around many Asian and Chinese concepts that are very new to me. I've learned a little bit about Chinese medicine. There is a lot of mind-body philosphy. I'm learning about pressure points and how they are used in self defence, about energy and meridians. I'm also having to learn to concentrate more, to become more disiplined and more focused. I've learned that in using martial arts you can defend yourself well and that defending yourself does not rely on your size or strength, it's all technique. When I get good at the martial art, I don't think I will ever feel afraid again hiking alone in the wilderness or walking in dark parking lots in inner city neighborhoods.

It's truly made me feel empowered....and a feeling of empowerment after a living with a cancer diagnosis is a great thing. It gives back a sense of control, of self-direction, of strength. I'm not sure if I've ever truly felt this empowered before, so I'm really loving the feeling. A cancer diagnosis makes you at least initially feel powerless, so the new feeling of empowerment is great. Tai Chi has also made me take my mind to a place it's never been before, to learn things I'd never contemplated learning; so it is also a great distraction from life in the cancer world. It's also making me take a longer look at medicine and health from a different angle, which is challenging for me.

I'm guessing there are different ways of acheiving this sense of empowerment, and I truly think it is worth pursuing something that gives those of us in the cancer community that feeling. It gives us another tool to use in our fight, another source of strength.

Monday, February 16, 2009

This Times a Charm Blog Book Tour

I'm doing something new and fun here! I was asked to participate in a blog book tour, a new concept for me, but one that was intriguing. I've read several books by cancer survivors, so it is a great honor to be able to support the author of a new publication, This Time's a Charm: Lessons of a Four-Time Cancer Survivor, by Donald a Wilhelm. Donald survived cancer four times in a five year period. His book documents his amazing journey.

Over the next couple of weeks, several bloggers, including myself will post reviews, podcasts, interviews with the author etc. on a rotating schedule. "This Time's a Charm" Cancer Blog Book Tour Schedule is as follows. The book tour begins today with an interview with the author at Fight Pink. Enjoy!

2/16/09 www.fightpink.org
2/17/09 www.cancerbookreview.blogspot.com
2/18/09 www.uniboobclub.blogspot.com
2/19/09 www.moutray.wordpress.com
2/20/09 www.makesomelemondae.com
2/21/09 www.awesomecancersurvivor.com
2/23/09 www.serendipityfactory.com
2/24/09 www.everythingchangesbook.com
2/25/09 www.cancercornerlive.blogspot.com
2/27/09 www.appendix-cancer.blogspot.com
2/28/09 www.discoverpetoskey.com
03/1/09 www.route53.wordpress.com

Thursday, February 12, 2009

The Triumph of Desire Over Reason...

"It's the triumph of desire over reason..."

That's what it says on the back of the T-shirt I wear as a beginning runner at my YMCAs 5K training program. The "beginners" are the ones who couldn't run a mile without being out of breath and exhausted at our initial meeting. I've never been a runner...at the beginning I was out of breath running just tenth of a mile. I hadn't run since I was in grade school. I have a bad ankle, am out of shape and overweight. I was for sure a beginner.

My reason said trying to train for a running event in April was silly. But my desire said I wanted to be better; I wanted to challenge myself, I wanted to get in shape. So I'm training. And now several weeks later, I can run 1.5 miles (okay, only a half mile at a time right now, but 1.5 with short walking breaks). My resting heart rate has dropped from 90 to 76.

At first I wished the T-shirt said something more profound...but running the other night and reading the quote on someone else's back made me think. Our cancer battle is kind of like that. Desire over reason. We desire a long and normal and productive life, but we reason that after a cancer diagnosis that we are unlikely to live to old age. We reason that we likely will suffer through chemotherapy, not feel good for a long while, suffer a recurrence and face death sooner than we'd anticipated.

Our desire and reason are at odds after cancer. We want our desire to live a long (or longer)and more productive life, to prevail. We want that desire to triumph over our reason, our assumption that we aren't big enough to beat the cancer monster.

Life's kind of like that all of the time,though, when you think about it. We always face some sort of challenge that seems unreasonable for us to assume we'll overcome easily. The challenge to get more education or a better job, to give up a bad habit, to get in shape, to lose weight, to be a better person, to be a more loving spouse, a better parent...you name it, we are always wanting to succeed where it is reasonable we might fail. Our desire is always at odds with our reason. And reason is easy, it gives us an excuse not to succeed, it saves us a lot of work. Working towards our desire is the hard part.

But I think in the end what makes us grow, what helps us evolve, what strengthens us, is our battle of desire over reason. What in the end determines the quality of our best trait, our character, is our desire to overcome what our reason says is likely impossible. Our fighting the hard battles.

I think the courage and determination we develop in achieving our desire to beat and overcome cancer makes us who we are meant to be. Achieving our desires in the face of reason takes a lot of work, and a lot of courage, though. It isn't easy. A cancer diagnosis is the ultimate test of desire over reason. It's a battle....and every small step forward counts.

But I think the battle we wage is our greatest chance to make a difference to others, to display courage, to inspire, to grow. Maybe our legacy for this life is not how long we live, but the demonstration of how we fight our cancer battle. It's about celebrating our triumph of desire over reason.

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.