Life With Cancer: The Biggest Fear Is People Finding Out What My Fears Are.

If you are reading this, this has been revised a few times, the benefit and the curse of writing over a few days.

However, it points out that while today influences tomorrow, you don’t just stop there, you keep on going, learning, revising, and understanding.

I started this post out about a month ago. That is unfortunately the way my mind and my focus works at times anymore. I get what I think is a good idea and need to develop it immediately or I lose the focus, becoming like my dogs forgetting that they just ate. Good stuff was there, but now it isn’t, so I have to find more kibble.

I have two purposes to this entry that I’ve been thinking about and hopefully will allow for positives to come from these words. One is what I have been calling the “30 ‘til 60” tour, which essentially means the 30 days leading up to my 60th birthday. The other is to hopefully present my “Philly Music Play It Forward” project in December. More on both of those things can be found farther down the page and in coming days.

As a note: Sorry, I’m not much of a wise-ass in this blog post, not a lot of laughs, or what I think is a laugh. Though as I write it, who knows what brightness may emerge. Being hopped up on leftover Halloween candy may help. What I want to write about is not currently joyful for me, but maybe putting it out there removes some of the disappointment (and frankly, embarrassment) I feel in basically being afraid. This is being written for me as much as it is for all of you, so I thank you for your indulgence.

Now, back to our thrilling tale…

This past week, while watching THE GOLDBERGS, a sitcom that I love (and yes, as with so many of the things I love, it is Philly centric), “Barry Goldberg” let down his bravado for a little while when he said “My biggest fear is people finding out what my fears are”. That line, written for a comedy, hit me square between the eyes.

When I had started this post, ruminating or justifying on why I didn’t try to experience what was a once in a lifetime event, the Papal visit to Philadelphia, I was writing it with different intentions. I was watching the Papal coverage, fascinated not only with Pope Francis himself but also with the reactions of people to him and to the events surrounding his visit. Each city that he stopped in had a unique mood, a unique purpose, and a unique reception. It was the community spirit in Philly surrounding that weekend that had my attention.

From the moment Pope Francis got here, this stop was for the people. While I do not agree with some church positions, this blog is not about religion, actually far from it. However, this was about the City of Brotherly Love and Sisterly Affection from the moment Francis set foot on the tarmac. His joy in seeing the throngs and the people’s joy of getting even a glimpse of his Fiat could be felt right through my TV in my easy chair, which is where I was all weekend. The look and feel of Philadelphia that weekend, devoid of traffic but filled with people was amazing.

However, that easy chair, those images, focused a part of me that I do not like a lot but do not know how to shed. That is the fear of doing.

And the fear of admitting that to people who I trust, who I know will understand if I just let them in.

As most of you know, I currently am battling (and hopefully winning against) Stage IV kidney cancer for the last three years as well dealing with a progressive lung disease, which I have held steady from getting any worse (which is inevitable) for the last six years. I’ve developed many ways of dealing with these issues from a life standpoint, finding people with shared passions and interests as well as rediscovering things that I became too busy to pay attention to in my now-gone working life, such as some damn great music.

I’m especially looking at you, everyone involved with David Uosikkinen’s In The Pocket

As with anything, there are fears and emotions that manifest themselves despite your best efforts. Some are basic frustrations, like not being able or allowed to do physical things like you used to. Some are annoying, such as fear of a coughing spell or fatigue. Some are curious, such as those days where you feel good and start to dwell on why today feels better than yesterday and how you’ll feel tomorrow.

And then there is the fear of surviving. Not the fear of actually pushing this into remission and into the background for years but the fear of what comes next if you do. This is where emotions take over. This is where the question of “why me” that I’ve asked all throughout my illness will become “why me”, why am I surviving when so many other good people may not be.

That is the fear of surviving, not of living another day or week or month or decade, but of what I will be when I do survive. What will define me, what opportunities and experiences will I have wasted and not be able to reclaim, what impact will I have had while fighting and will it mean something once when the life lights are a bit brighter.

Survivors guilt is a powerful and haunting thing, balancing the utter giddiness and joy of when I’ll finally hear that we are in remission with a profound sadness that someone congratulating me may know others who haven’t gotten to that, or may have lost someone in the past, or may in the future. Or may themselves be facing a similar illness.

By the way, I just noticed that I typed “we are in remission” instead of “I am in remission” in the last paragraph. That is the manifest of how much I value, desire, need, and thrive with the love and support of all of you. To me, this is our accomplishment because I’m not doing any of this alone. And that feels great.

However, there is something that I’ve not yet been able to overcome or successfully deal with, and last month’s Papal visit really forced me to look at it. That is the fear that now envelopes me each and every day.

This is more than the fear of dying, for that is ever present now. As much as I have learned to live with it, I’ve never gotten past it. That is part of my morning, noon, and night. But this is more than the fear of what is going on around me, the horrible injury to my brother-in-law and the pressure my sister faces every day in trying her best to make our lives as livable as possible. This is more than the fear of the financial and time restrictions I now have to face.

This is the fear of going out and standing out for the wrong reasons. Being afraid to slow down or negatively affect others that I may be out with. Being an easy target at the wrong time. The Pope’s visit really focused it this week, awoke that dragon that dwells deep inside of me. As I watched with marvel and wonder as my home town, my Philly transformed into a sea of people on streets devoid of traffic but filled with life and love, I feared what would be (and probably wouldn’t actually be) if I tried to be in that crowd, especially by myself.

Yes, I have reluctantly accepted the limitations that I know have, and that includes my little oxygen buddy, which I’ll now call Gilligan because hey, “little buddy”. The battery operated unit has a run time limited to four or so hours, so that is always in my thoughts when I am planning a day somewhere. Add in the reluctance to accept that time and distance are no longer a good friend and you have some fun logistical planning.

Still, all of you are too much fun to  be with to not makes the mental changes to fix this.

To try to affect that, I’ve decided to try to do two things, one for myself one and one for people and music that has been so important to me. This month, I begin my approach to 30 days before my 60th birthday (December 6th). Being 60 in and of itself is not monumental in the grand scheme of things, but this particular “60th “ milestone is very important to me. When I was diagnosed with a return of my kidney cancer, with that “Stage IV” tag added to it and I knew that there is no Stage V, I really went into a dark place.

One of my thoughts was that I would never see 60. Not that I wanted to get older, I like being younger, but that I was losing the chance to get older, and the fear of losing that was overwhelming. A year and half later, I am within one month of proving that fear to be unfounded.

The bad part of this fear is that, over these last couple of years, there have been so many good people that I’ve failed to meet, so much good music that I’ve promised to see and haven’t, so much life to experience that I’ve shied away from because of these fears. I am actually hesitant to travel into Philly anymore since I see the oxygen concentrator on my shoulder as a target if I am alone in Center City. I fear being alone in the big city with that slung over my shoulder. I’m afraid of looking slow, feeble, and weak. Because of that, I’ve been unable to keep promises to see some good people perform as well as to simply see friends.

I still have that fear, and probably always will. A comedian who brings me great joy and who has been an inspiration to me, Philly guy Craig Shoemaker, returned to Philly for three shows at Helium that started 11/5 through Saturday 11/7. Read my past blogs to see why I respect him so much. He has a new project called LAUGHTER HEALS that is aimed at developing the ability to find the light in any personal darkness that you suffer through an illness or addiction. That is something I so desperately need.

Even though I wanted to see him, I simply was frozen in fear about heading into Center City with my oxygen buddy all by myself. I asked a few people who I know to come with me but nothing was able to be worked out. As it is, because my brother-in-law comes home today after three months in physical rehab, it pretty much settled the question for me and gave me an out for not going. However, it didn’t solve my fear of making my oxygen as invisible to myself as I want it to be to everyone else.

I’ll did the “being there in spirit” thing and listened to Craig’s “The Last Stand(up)” album that he recently released to laugh along with the Helium crowd.

With that said, it is time to also say “Enough” to what I am afraid of. (I saw a spider yesterday. That fear [and the accompanying scream] will never go away).

So, starting with The Hooters concert at the Keswick on November 7th, I intend to take the next 30 days leading up to what was once unimaginable to me, my 60th birthday, and find ways to celebrate YOU. My friends, the music I love, the people that make me laugh, the people that make me determined, the people who mean the world to me.

There are a hell of a lot of you!

I’m going to be making sure my family knows what they mean to me during the “tour” up to December 6th. In addition, over the next 30 days (and with the caveat that my wallet may dictate some of this), I want to see as many of you as I can to thank you, to dance with you, to laugh with you, and to listen to and learn from you. I hope that you’ll want to join me one night, or for a few minutes. While my energy level probably won’t allow me every day out and about, I hope to do as much as possible with friends. Achieving that “60” milestone means nothing without friends. That mean all of YOU!

As for the “Play It Forward Philly music project” idea, I’d love to bounce my ideas off of you over the next month to make what I have in mind actually doable and fun. The basic concept is to spread the word about the legacy and vitality of the music that has always come from Philly and to find a way for it to benefit others.

The Hooters are a perfect way to start these 30 days, because who better to kick it off with than the person who helped me find that inner joy of music again, David Uosikkinen. I don’t think there is any way I could possibly tell David all that he has meant but I sure as hell intend to try.

I’ve got a few dates circled now and hope to add more. I’ll be posting them on Facebook, but please, if you want to join me, just let me know. I’d be honored to join you for whatever. Don’t expect great dancing, though.

And with your help, I can say “Fuck Cancer and fuck the fears that come from it”.

Six Years Removed And Still Relevant: After Home Video

This is a melancholy anniversary. This is six years since my last day with TLA Video as they decided to start phasing out the physical brick and mortar stores that I was so proud of and worked so hard to keep relevant and powerful (and succeeded for many years). This marked the end of 27 years in the home video industry that is such a proud time and memory for me.

At the time, it was a sad moment, but because of that break in activity, I decided to finally take the time to get my knees replaced. It was that decision that led to x-rays that showed my interstitial lung disease. In a perverse way, TLA closing the stores led to the diagnosis of a condition and the cancer that followed that might have killed me if left undiscovered.

From a small store in Ardrmore (Video Wonderland) across the street from 23 East Cabaret, the mecca of great Philly music, I wound up accomplishing a hell of a lot in an exciting industry. Through Movie World, Borders, West Coast Video and finally TLA Video, I met plenty of stars, discovered so many great films including wonderful indie films, and learned so much from my fellow employees and the best video retailers spread across the country.

I was proud to serve on two national boards of video retailers (Video Software Dealers Association and Independent Dealers of Entertainment Association) with the heads of Hollywood studios, other big chains like Blockbuster, Amazon, and Netflix, and to help spearhead the creation of a national trade group focused specifically on the needs of independent video retailers.

I was most proud to see salespeople and others that I started out with and was friends with from 1983 on rise to become heads of studios, distributors, and influential top executives in the future of entertainment. I declined job offers with some distributors and labels because I strongly felt I had made a commitment to my then current employers to continue what they hired me to do. I felt moving on was abandoning my promise to them. I did begin a writing phase in my career and spent a few years authoring a children’s video column for an industry trade publication called Video Insider.

I had a great 27 years and to forget humility for a moment, I did a fucking great job alongside of many fucking great people. When I was hired by TLA in 2001, I felt like my mission then was to possibly close a store. A wonderful store that just needed someone new to care about the store and the staff. It thrived for 8 more years, thanks to the support for my ideas a couple of people at the main office. It became a renewed and important part of TLA Video partially because of me but mainly because of a great staff there.

So it is six years and I miss the ability to go to work and deal with issues and talk with co-workers and be part of a team and to accomplish and to learn from failing to accomplish and to bitch about going to work.

But six years out, I am still here with a ton of new friends and still many from the past, though some drifted away once I wasn’t relevant to their needs.

Plus, besides a ton of new friends who share common interests, I’ve also been able to renew my passion for the singular music of Philadelphia as well as find new filmmakers making exciting films.

Still fighting to survive and thrive. Still working to remain relevant, one person at a time.

A melancholy anniversary, most definitely, but one that forced me to find that new way of life that has brought me many joys.

Fading away is not an option for me.

Thanks to all of you forever.

Now back to my usual social media frivolity.

My award from the VSDA National Board Of Directors 2004

My Day At Chemo ~ The Ballad Of Ol’ Doc Zeger

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.

Now I wish I had two more bowls of ice cream.

National Cancer Survivors Day ~ Thriving Day

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.