It’s a good day. In general and also for a special reason. The sun is shining, Summer is almost here, and for me and many others, it is National Cancer Survivors Day. For me, it is a day to realize all that I have far outweighs all that I could lose one day.
As you can tell by blowing the dust off and sweeping away the cobwebs from my blog, I haven’t written much on my blog over the last few months. It’s not that I wasn’t writing. Quite the opposite. While I was not having much luck coming up with topics that I felt you would want to read about, I was blessed the last few months with an opportunity to create and contribute public relations and social media efforts for the Haverford Spring Fest. I wrote a number of press releases and stories leading up to the Spring Fest, which in two years has become a vital addition to all that Haverford Township and my adopted hometown of Havertown has to offer its residents as well as those in the extended Philly area. Havertown rocks big time!
Despite some downright nasty weather forecasts that kept some people away, thousands still danced, sang, and partied on that wonderful Spring day, in that wonderful (and delicious) area of Havertown, Brookline Blvd. Music from David Uosikkinen’s In The Pocket, Charlie Gracie, Kuf Knotz, Ashley Leone, The End Of America, Cabin Dogs, The Cat’s Pajamas, and the Haverford High School Jazz Ensemble created an amazing aural soundtrack for an afternoon of fun, food, and just hanging with thousands of great people for a great cause, music education.
For me personally, it was a chance to experience what I used to be able to do in my old job put to good use again, and that is to excite others about something that excites me tremendously. I would be remiss if I didn’t mention that it wasn’t always easy. Focus is an issue for me right now, organizing thoughts into logical and productive deeds. My computer, god bless it, was pushed to its limits by what I tried to do with it. My basic photshopping skills got a little less basic, and it thrilled me when people said they looked good. And physically, I pushed myself over the limit, especially day of fest, and felt the pains for days afterwards. But it felt so good to do that. The pain was fleeting, the feeling is forever.
The best thing were the “thank yous” that were offered to me, not just by the fest organizers, but by musicians, managers, and their families who made it all worth it. As much as I’ll say that I am not deserving of all the praise I received, a part of me was overjoyed to be thanked once again for a job well done after so many years.
And that brings me to how I see today’s National Cancer Survivor Day. I’ve spent a good amount of time over the last few days reading hundreds of posts, stories, and comments about NCSD2015. Many wonderful, some heartbreaking, some frustrating, all inspiring. In addition, this “celebration” comes at a time of both personal and public cancer issues: the sudden downward turn of someone who was a major positive figure in my home video retailing life who has been battling cancer, as well as the sad outpouring from the death from brain cancer of the beloved Beau Biden. It is also during the news that Leah Still is suffering a setback in her treatment. It is hard to celebrate being a “survivor” when we lose one good person and almost lose others.
The conversation online is how some of those suffering from cancer (sorry, I cannot bring myself to calling us “cancer patients” because that is too clinical, too cold, even though it is technically true) struggle to justify calling themselves “survivors”. Some have concerns calling themselves “survivors” when they are still continuing treatment, some of whom will have to have treatment for the rest of their lives, like me. Some have concerns celebrating while others struggle with their own cancers. And some have problems with the word “survivor” itself, because it doesn’t go far enough.
I fit into that last category. Cancer cannot be cured. It does not go away. It never leaves. Being “cancer free” is not forever. Remission is an ultimate goal but it never removes the ugly face of cancer from your life, from my life. I used to dream of taking a trip by car across the county to see the good ol’ USA, of taking an extended vacation to Florida or Hawaii, or retiring at age 65 after a successful career impacting how you watch home video and enjoy music. Now I dream of reaching a point where I can have these dreams again.
I’m getting there.
But the word “survivor” feels too limited. The word ”survivor” gives too much weight to the horrors of the past, and not enough to the potential of why I and others celebrate. I don’t want to survive, I want to thrive, I want to create, I want to dance, I want to sing badly, I want to experience, I want to share, I want to contribute.
I want to have an impact and for others to have the chance to impact me.
So, I have resigned myself to the fact that I will never be cured, that I can’t change the past, that I’ve lost some wonderful things I had in my life, and that because of my lung fibrosis, I’ll always need Gilligan, my little oxygen buddy, at times. But I have not resigned myself to my life being over and done with. Been there, done that.
When I was told that my kidney cancer had gone metastatic last year, the world felt like it was flat, was tilting, and was pushing me over the edge. My primary care doctor told me that I could be hit by a car tomorrow, too. I was beside myself with anger. Such matter of factness was not what I wanted. However, the guarantees that I wanted was not what I could get and frankly, not what I needed.
What I needed, and what I found from so many of you was the expectation for me to get out to live and enjoy life again. My family, my friends, my doctors, the people with the Haverford Spring Fest (especially Tom Kelly), my Dunder Mifflin friends, video industry friends, the many musicians and people I have become friends with over the last few years (especially David Uosikkinen, Dallyn Pavey, Peter Shinkoda, and Craig Shoemaker), and so many more taught me how to deal with this and find the light that exists in every darkness. I can’t name everybody here, but you are all in my heart every minute.
So, I celebrate National Cancer Survivors Day with so many other great people who have the same doubts as me and still struggle with how we apply the word “survive” to our current health battles. Lankenau Hospital held a party for over 100 cancer survivors as well as cancer center staff this past Thursday. It was a fun beach-themed afternoon, meeting good people, sharing stories, dancing to great music (and yes, I requested The Hooters AND WE DANCED as my contribution to the celebratory spirit) and just moving past what was past and thriving on the spirit embodied in every person there. I even took part in a conga line, but stubbornly did it without Gilligan, my little oxygen buddy. And I paid for that omission. After a couple of laps around the room, I felt my oxygen levels drop and my heart race, so I had to un-conga myself. It burned, but like a good strenuous workout, it was a good burn and I had a blast doing it.
Still, we continue to survive today going forward, doubts and fears never far from our minds, but also no longer the only thoughts on our minds. I actually wrote this new blog post after six months of writing inactivity. I am moving forward again with all of you. There is no reverse in my “car”. I can and will create. Every day.
Today, I ask you to say hello to someone with cancer. Don’t quiz them on it, don’t tell them they look healthy, don’t let the elephant in the room become the topic of the day. Instead, just share with us, goof around with us, sing along badly with us, argue with us over politics, and remember, we love meeting and making new friends because of who we are, not how some miserable disease defines us.
We are happy to be “survivors” but we simply love to be with you, making each day better. And please, please, please, if you ever see my sister Julie or my brothers Joe, Tommy, and Ricky, mock them mercilessly but give them hugs for me. In addition, if you ever see my god, my rock star, my hero, my oncologist Dr. Erik Zeger around, say Hi, tell him you know me and he will do his own mocking of me. Realize that like so many other caring doctors and nurses, he is frakking amazing.
And that all of you make all of us thrive, not just survive, every day.
Love to all.