I'm a retired veteran of the home video industry, currently battle kidney cancer and a progressive lung disease. I took to writing this blog to chronicle my journey going forward, as well as to keep myself relevant. Besides posts that deal with my kidney and lung issues and how I live with them, you'll also find a lot of fun, friends and family. Please comment and share if you like something. I'm still loving life.
Today was my chemo day up at Lankenau. This is every other Wednesday for now. It is actually my version of going to work for the day, seeing great “co-workers”, planning things out, working in tandem with a “crew” to achieve goals, and waiting for lunch time.
It was a good day, and as usual, it included an appointment with my personal god, my rock star, my hero, Dr. Zeger. We had to see what new ailments I had and other than a stuffy head and wanting to know what was for lunch, there was nothing to worry about.
We talked about the National Cancer Survivors Day party that was such a blast last Thursday at Lankenau Hospital. I mentioned that I requested AND WE DANCED by The Hooters from the DJ and yes, people danced and I kind of danced. We discussed how much ice cream we both overate at the party. I had put on four pounds and he joked that the raffle I won, a basket full of exercise equipment, was probably a sign about all that ice cream. We discussed his amateur soccer team and how he looks so young and yet was called “old man” by an opposing player. So I now call him “Ol’ Doc Zeger”.
While I was waiting to see him (he was delayed because he had to handle some details for a sick patient), I saw about six of the nurses go over to a woman in a chair, blow a few noisemakers, and then sing the most wonderful congratulatory song to her because she was getting her final chemo treatment and was now considered “cancer free”.
The song was wonderfully silly and fun and if I had to give it a name, it would be “Cancer is in the Rear View Mirror”. I heard her cry tears of joy and gratitude and it was wonderful to hear and witness. As of now, she has some peace of mind, a precious thing indeed.
As I sat in the recliner getting my IV of Avastin, I put on my headphones and started shuffle play on my iPhone. The first song out of the gate was WAIT IN THE RAIN by Graham Alexander, one of the best new CD’s this year. Great way to start a KhemoKaraoke.
Halfway through the treatment, though, I got a little melancholy. I feel a bit bad that I did, but I think it is only natural. I thought back to the happiness of that song, that woman, all the nurses and the wonderful moment I got to witness. However, I started drifting into wish territory. I started wondering when I would get to hear that song with my name in the lyrics, get to hear those silly lyrics, and get to feel that emotion.
Don’t get me wrong. Despite the cancer, I am still trying to live my life as positive as possible, enjoying family and friends old and new, being as productive as possible, having great times, and hearing spectacular music. Energy and funds may not always allow it but this weekend includes a show with my favorite comedian Craig Shoemaker on Friday, a Retro Roadmap meetup at a classic 5 & 10 in Quakertown Saturday morning, and The Hooters concert Saturday night. Plus just hanging with my family the rest of the weekend. I am seriously enjoying life more than I thought I would after the diagnosis. All of you inspire, expect, deserve nothing less in me.
But still, I dreamt of the time that I hear that tune. I dreamt of the doctors and nurses singing it to me. I dreamt of my family being there and singing along both badly and proudly, I dreamt of my friends making up more silly words, and I dreamt of a supergroup of all my favorite Philly rockers playing it like the greatest rock masterpiece ever. And yes, I dreamt of achieving something that I thought I just can’t have right now, peace of mind.
Then, as I finished my chemo, I saw the other patients, the wonderful doctors and nurses, as well as staff, all making the best of the day, making sure the smiles kept coming, and I realized that my peace of mind is not so impossible, not so far away, not with so many great people around me.
I may not yet be hearing that tune, though it was appropriate that the final song that played on shuffle was Louis Armstrong’s version of WHEN YOU WISH UPON A STAR.
Damn straight, Satchmo, you and Graham and everyone else help to convince me my dreams will come true every day because of the people I am lucky to “work” with every day. That was some damn fine peace of mind magic.
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.
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.)
Today, December 6th, is my 59th birthday. That’s not a normal milestone birthday but for me, this year, it is. I’ll try not to get too heavy here but this year was a heavy year, as many of you know.
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.
I think the old adage goes “write from what you know”. If that’s not an old adage, it should be.
So, taking my own sage advice, passed down through the ages by everyone and no one, here goes nothing. And here goes everything for a very tense but still hopeful year.
First of all, the Philadelphia Phillies are making me have a big sad. I love baseball, and yes, I still love my Phillies, but as of right now, they are eleventeen games below .500 and are probably going to have trouble catching a cold, let alone a playoff spot. It’s reached the point where Ruben Amaro Jr, my candidate for “WTF GM Of The Year” has to start thinking fire sale and trot out another old adage: “Wait Until Next Year”, which I am pretty certain is REALLY an old adage and not one of my own brilliant thoughts. Unless there are royalties attached to it, then make all checks payable to “ME”.
That “wait until next year” is the part that causes the motions and emotions to write this blog. A couple of months ago, that phrase terrified me. For those of you who may have been playing along with the home version of my life, you already know the spoilers for this blogpost, but for the rest, a recap.
Let’s start with chocolate. Not just any chocolate, but HERSHEY’S KISSES. And it is not Easter, yet I am talking sugar sweetness and candy. As many of you know, I take great pride in my 27 year legacy in the home video business. I’ve talked about it with many of you, many more of you that I worked with have shared this business and success with me, and some of you who shared this business with me are now pretty invisible. But that’s a story for another day.
However, the chocolate part of this story, as well as the opportunity to reawaken my business skills by working on the HAVERFORD SPRING FEST helped to keep everything else this year in good perspective.
When we last left my story, you know that I had to retire due to a lung disease. I’ve never smoked, so of course, I get a lung disease. I’ve been battling a progressive beast for 4 years now and frankly, I am frakking proud of how I’ve managed to control it so that I can still be just a smidgen useful to others.
Then, last February, I had to have my right kidney removed because I had developed Kidney Cancer. I had written about that battle in these posts, so feel free to backtrack and read these, then jump back and join the tour here at this spot.
Hey, now, welcome back. So, as you can see by both the blog posts and my time spent on Facebook and Twitter, this operation appeared to be a success. I felt better, I lost weight, and I felt like I was ready to put this behind me.
Fast forward to this year. In January, I took my usual three month scans and follow-ups, and aside from a benign nodule on my thyroid, all seemed to be OK. So good in fact, I went out and ate chocolate. And got paid for it.
I’ve been many things in the last four years, not the least of which is bored to tears. I miss working so much, and everyone who bitches on Monday morning about going to work, you have my envy, not my sympathy. So, I am always looking for something to do. One of these is a local focus group. In February, they offered me the opportunity to come to their Bala Cynwyd offices and eat chocolate and crackers for four days. And get paid $160 for it. Tell me again about dream jobs.
I went four days in a row, for about 1 hour a day, and ate a total of 93 Hershey Kisses and 28 crackers. The kisses looked like regular Hershey Kisses but each one had a different taste, smoothness, meltiness, and varying foil wraps. The idea was to answer questions about the quality, packaging, and differences between samples. But the more I ate these, I realized that the consistency of my answers over the entire four day stretch was more important than the way I thought sample number #269 tasted.
It was tough, but I completed the mission, took my money, and paid bills. I said it was tasty, not a gold mine.
This was my life through mid-March. Then came my next scan.
You know how they tell you NOT to diagnose yourself by looking things up on the internet? Good advice.
I took the scan on March 20th. It was a couple of weeks early, but I was seeing my oncologist on April 8th and wanted to make sure that he had current results. My hospital has a web portal that allows me to access my medical tests about 48 hours after they are done. So, I saw the test results on March 23rd, before talking with my doctor. Even for a layperson, I saw that there was something not quite right about it. Especially when I hit the words…
POSSIBLE RENAL CELL CARCINOMA.
Yeah, I’m gonna say the bad word. I shouted “FUCK!”. All my hard work to try and keep on top of my disease, and all the hope I had for the last year as it seemed that kidney cancer was in the rearview mirror was gone. And yes, I looked things up before I heard back from my doctor. Again, a mistake.
I finally talked with him, he set up an MRI and I saw him for the results on April 8th. As much as I was chomping at the bit to look up the results, I waited for him. And my fears were confirmed. It looked like there was some cancerous activity that was now in my liver. Of course, I rarely drink, so I developed a disease in my liver. The trick is that it is the return of kidney cancer, since it had the same markers as my previous cancer. That meant that while I was treating the liver, the liver was simply living the past of my kidney.
I had the biopsy done, which was a surprisingly calm and easy procedure: in the hospital at 7 AM, out just after 12 Noon, and with a free lunch!
As a matter of fact, while I was worried up until this time, I was still fairly calm. That all changed once the diagnosis was confirmed. And this is where many of you may know the story already. I simply went into a panicked funk. I was scared out of my skull. I had no idea what would come next, I had no idea if I would wake up the next day. When I would go out, I would look at a street sign that I saw every day and wonder if I’d see it tomorrow.
I worried about my brother Tommy, and whether he would hate me if I got sick or worse. I worried about my sister, who has been my godsend and my lifeline through all of this. She is amazing but she deals with everyday problems and concerns with the toughness, grace, and caring that were now so needed by me.
I worried about the rest of my family and I worried about Swiper, my doxy buddy. He and I have become very close and I’ve been told how he waits for me to come home. I was worried about disappointing him someday.
I worried about friends and others who have been there for me. I worried about going to see my favorite comedian Craig Shoemaker, who can make me laugh in spite of anything. I worried about going to an IN THE POCKET concert, since I spent some of the time wondering if I’d have another chance to enjoy that amazing music.
I was afraid to commit to anything. Friends wanted me to go out, people wanted me to enjoy something with them, my family wanted to invite me over. I got really annoyed when people would say to me that you don’t know if you would be hit by a car tomorrow. Yes, that is true, but you also don’t sit and think 24/7 about the possibility of that car the next day.
I made excuses for most of these invites and attempts, I begged off, and I simply was too afraid to live to realize that I still had a lot to live for.
Then came something that topped those Hershey Kisses (and that $160). That was the HAVERFORD SPRING FEST. Back in my youthful days, I went to Villanova University and spent way too much fun time at the campus radio station WKVU 640 AM. Besides a number of great people, I met Tom Kelly there. Tom had forged a damn impressive career in the radio business and is now the founder of iradiophilly.com, an online streaming music service with over 20 themed channels that have actual personality and thought behind them.
Tom has also been a very big civic booster in my adopted hometown of Havertown PA and has been the driving force behind the HAVERFORD MUSIC FEST, a town-wide fall music event. Tom invited me to help plan a spring music and arts festival that would focus on a one block business district. I was tasked with doing the social media and public relations for the fest. That meant things I was familiar with, like Twitter and Facebook, as well as things I was very rusty in, such as media contacts and press releases.
This coincided with my funk over the spread of my kidney cancer, and I’ll be honest, I was ready to drop out because my confidence was shattered and my spirit was non-existent. Tom talked honestly with me and helped me sort out a few feelings.
All of this came along at the right time, because the more I talked it out and learned, the calmer I became. I didn’t lose the underlying fear of what could happen but I did learn that I can’t give up the “now” for one possible scenario in the future. At the same time, my medical efforts moved from the diagnosis into the realm of treating and dealing with my kidney cancer.
What you should know is that my doctor was honest and told me that there is no cure, but also told me that “no cure” does NOT equate with “no hope”. We devised a treatment plan with the goals to stop the tumor growth and spread, shrink the existing nodules and get me into remission. Definitely not a “home free” scenario, but a scenario with a definite chance for a good future.
We started a weekly chemo session with a drug called TORISEL. You knew this wouldn’t be easy, right? TORISEL was chosen to start with because he has confidence in it, and because we have to be careful what drugs to use to have the least effect on my lung disease. One of the side effects of the drug is developing a possible “interstitial lung fibrosis”, which I already had. Since there had been no tests done with this drug on people who already have this ILD lung disease, there is no way of knowing if the drug would make the existing lung problems worse. So, stepped up monitoring by my team of lung doctors is now part of the plan.
The good news is that after 7 treatments, I have suffered only minor side effects and nothing that shut me down for any length of time, so I’ve been able to live a slightly modified but normal (for me) life. I even drove myself to Chambersburg PA on a Saturday to see the wedding of my dear friend Jessica Ownes-DeShong and see some of my old Dunder Mifflin Infinity Allentown friends. After the 12th treatment, I’ll do scans again and we will see how effective the treatment is and plan next steps. (Update of as 10/16/14. I’ve now had 23 treatments. Despite two recent hospital stays, and more than enough turkey sandwiches, thank you, I am stable and still bopping around. Good stuff.)
However, I feel really good and if I didn’t know what I had, I’d not notice any of the little body aches and effects that aren’t that bad. People tell me I look good and that makes me happy, because I don’t believe it is lip service, I believe it to be true. And I’ve been given permission to lose 10-15 pounds, which is like winning the lottery for me right now. (No, it really isn’t, I’d like the POWERBALL jackpot, too, please.)
The Haverford SPRING FEST was held on a gorgeous Sunday, May 18th, on Brookline Blvd from Noon to 7. We had six performers play from the stage (see the graphic below) and we drew 8,500 PEOPLE!!! EIGHT THOUSAND FIVE HUNDRED PEOPLE CAME TO ENJOY THE DAY THAT I HAD A HAND IN PRODUCING.
Damn, that felt good and showed that I have lost nothing more than a little time spent worrying about what might happen and not noticing all that was happening all around me.
So, why did I write this blog post? Because I have to be honest with everyone. Because I have to be honest with myself. Maybe I share too much, but that is simply how I am. I believe that I am one hell of a package that needs very little dressing up and inflating.
Plus I need pants (my close friends will know what that means.)
And maybe more chocolate.
Thanks to everyone for your patience with this patient so far. Keep following me and being my friend for the next 20-30 years and see where we can take each other.
Watch a little after the 3 minute mark for a nice treat. 😉
As I sat in the recliner getting my IV of Avastin, I put on my headphones and started shuffle play on my iPhone. The first song out of the gate was WAIT IN THE RAIN by Graham Alexander, one of the best new CD’s this year. Great way to start a KhemoKaraoke.
I may not yet be hearing that tune, though it was appropriate that the final song that played on shuffle was Louis Armstrong’s version of WHEN YOU WISH UPON A STAR.
A View From Under The Desk 2.0 
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