Always start with a joke…
“How about those 2014 Grammy nominations?”
OK, then do a little song…
Now you have your blog audience in the palm of your hands. You can start now (and drop the 3rd person style, it’s a cliché.)
This 59th is a “lamppost” birthday, a day to take a break, lean back, reflect, but then get my ass moving forward. That forward will partially explain the reason for that fine graphic at the top of this post.
Lampposts illuminate the darkness as well as steady on the journey. Lampposts may hold signs pointing out the direction to go, waybills telling you to look and see what is happening around you, or old Grateful Dead bear stickers that will never come off.
(Before I continue, if you have the time and the inclination, this link will take you to a list of posts that I’ve written about my life and my journey over the last few years. I think these will amuse and amaze you, and even if they don’t you can laugh at the picture of me. )
When I was diagnosed with Stage IV Renal Cell Carcinoma back in March, 13 months after having my right kidney removed to hopefully stop the cancer in its tracks, I simply lost it. The cancer had spread to my liver, but was still kidney cancer since all the genetic markers were from my kidney. Add this to my interstitial lung disease and this is complicated. It figures that I don’t smoke, so I get a lung disease and I don’t drink, so my liver goes screwy.
After a year where I felt that maybe, happily, finally, something was going to go right for me medically, this just threw me up in the air and I landed with a month long thud.
I made the mistake of using the internet to research it without acknowledging that I NEVER WENT TO MEDICAL SCHOOL AND AM NOT A DAMN DOCTOR. I just played one on the internet. I panicked myself a lot, and maybe it was justified. I read the life expectancy averages, I read the side effects that chemo can have, I read the possible out of pocket costs that might come with this. Every little ache, pain, and blemish sent me into Fred Sanford mode (I’m coming, Elizabeth!).
I worried about how to plan for the costs should I not survive. I worried about how my family would replace my support and income. I worried deeply about breaking my promise to my mom and dad to always be there for my brother Tommy. I worried about my beloved buddy, Swiper Doxy, and pictured him sitting sadly outside of my old bedroom door wondering where I’ve gotten to. I worried about promises to friends that I desperately wanted to keep as well as losing those friends, many of them new to me and many who have been there all along.
Then the best thing that can happen at the time happened. I started chemo. While chemo is scary and I hate being a pin cushion every Wednesday, it started to give me hope, it allowed me to plan, and it stopped me from self-diagnosis. I was no longer sitting around worrying, I was doing something about it.
Thankfully, I have been lucky (imagine that, lucky with cancer) with my chemo. The side effects have been relatively mild compared to what it could be. No hair loss, the fatigue that could last for days usually only lasts for a few hours afterwards, no real nausea, no mouth sores, no major issues. There is a concern about the chemo adversely affecting my lung issues, but so far, they are holding steady and not regressing. About the worst thing has been a rash and itch on my back and arms and the loss of the sense of sweet taste, which makes ice cream so sad.
In addition, chemo has given me another extended family, a schedule, and a caring group of people in the same situation. I have learned to find the fun at chemo, whether it is my threat to start a “khemo karaoke” event there, taking some wonderful chocolate treats made by my sister in law Richarda, holding a luau (that did happen), or planning for pizza and Christmas caroling in a couple of weeks there.
I’m in a hell of a battle, one that has no cure and the best outcome that I can achieve is remission for an extended period. It’s pretty dark under this lamppost, it still is and will always be. Right now, I’ve been able to hold the cancer to no growth, to stability. At the end of the month, I take a three month scan and I am praying big time that it shows shrinkage in all the right areas (not in my naughty bits, I wouldn’t want that). For now at least, chemo is as regular as my doxies wanting scrambled eggs on Sundays.
I also got back to remembering that I have friends and family who are there for me. I went out to visit people, I did things despite being scared to leave the house, and best of all, I immersed myself again in music and comedy, strong components of enjoying life to the fullest. Never forget to laugh, dance, and sing with those around you. It’s contagious.
I proved to myself that I still had the skills that made me so successful in my previous career in home video by helping to plan the Haverford Spring Fest music festival in May that drew over 8,500 people for a day long concert. That made me so frakking proud.
I laughed with my friend Craig Shoemaker on his last year of doing intensive stand-up comedy tours. Craig has been amazing support, wrote a wonderful book called LOVEMASTER’D that shows how a conversation between two people who don’t know each other at the outset can bring healing and hope for both, as well as the reader by extension.
My friends who are there with me every day in social media as well as in real life have been so supportive, kind, and patient.
And I saw some great concerts by amazing Philly musicians (and hope to see more in the future, (I’m looking at you, SORAIA, , GRAHAM ALEXANDER, SHADOWPLAY, KEITH SHAW, DANIELLE AND JENNIFER, MATT CERMANSKI, and PAUL KURREY and many more.) Damn, I love the music that comes from Philly.
I’ll include some videos from these concerts at the end of this post, but thank you David Uosikkinen and your amazing IN THE POCKET (and Dallyn Pavey) and THE HOOTERS, Cliff Hillis, Smash Palace, Jim Boggia, Pete Donnelly, Huffamoose, Ben Arnold, The End Of America, Ladybird, and an honorary Philly guy from the West Coast, Willie Wisely among many others. This music is inspiring and amazing to hear and watch in both its creation and performance. And it lifted my spirits when I needed it, and kicked me in the ass when I deserved it.
It is this music that explains the graphic at the top of this post. I have had an idea I’ve been thinking about for a while. In my mind, it is a grass roots, crowd sourced effort to promote all the greatness in Philly music today and in the past. I strongly believe that the rest of the country doesn’t give us enough notice and that the music lovers in the Philly area need to shout it out loud to the rest of the world. Music out of Philly is as good as anything out there.
I am calling it “Play It Forward, Philly” and will be introducing the initial concepts in the next week or so. It is not a profit center for me, and frankly, I’m still not sure exactly how the bare bones will work. But it needs the fans to spread it out. It is not about me at all, I only hope to be the starting point. That’s why I’ve been using the hashtag #PlayItForwardPhilly. It’s all about getting the word out.
I can use your advice. If you’d like to help develop it, please feel free to contact me here, or on Facebook and Twitter and we can talk.
That word, FORWARD, is how I am now living my life. Fuck lung disease, fuck cancer, embrace life, cherish all around me, and draw inspiration from how they live to move myself forward to my 60th birthday.
And my 65th…
And my 70th…
And my 75th…
And many more!!! Thank you all.