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

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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…

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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.

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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.

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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.

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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.

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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.

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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).

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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!

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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”.

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

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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.

019f804a43d1bf94c73edbc4c437929acce768cbe0 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.

018405ca4a5ac75079eb4de789b08bd3241341af2b 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.

In the Heat Of The Day: A Miss And A Hit

Previous posts about my ILD can be found here: Pulmonary / ILD Posts

In the Philadelphia area, Wednesday was another hot day in the chain of heat wave days that have cursed the country and the Philly area. It was hot enough that my sweat broke out in sweat. I fried absolutely nothing on the sidewalk but if I did, I’d blog about it.

However, as I have mentioned in previous blogs posts like this one (PULMONARY: The Heat Was/Is On ), I am now in my own uncharted territory. The dreaded OZONE WARNING. This announcement by concerned looking weatherpeople as part of the litany of do’s and don’t’s on a very hot day is now seemingly aimed directly at me.

Wednesday was a very hot day. Trust me. I know this because, even though I now have to concern myself with the dangers of heat to my lungs because of my progressive lung disease, I still am human. I still do not want to sit at the window and worry or envy those who can brave the elements.

The very hot day also coincided with two things that I actually had planned to do. Usually my planning nowadays doesn’t go much deeper than making sure I take my shower before someone maliciously launches the washing machine. This day, I had places that I wanted to go. And they were out of the house. Outside. In the heat. In the Ozone that I had been warned about.

So far, I’ve handled the heat as well as can be expected from someone who has hidden from it, but hiding is giving up. You can’t hide from life, too.

As you’ll note, the title of this post tells you that I had a “miss” and a “hit”. The miss involved something that I was really excited about going to and the “hit” was something to took too long to finally happen but was wonderful.

I have to use discretion with my discretionary income, since disposable income was disposed of a long time ago. I am always grateful when a concert or event comes along with an affordable ticket price. As you may have noticed if you follow me on Twitter and Facebook, I LOVE, repeat, LOVE music, with a special place in my soul for music from Philly. When I listen to a song or group that came out of Philadelphia, it not only excites me as music but also as a little bit of hometown pride.

One group/project that I have been following and championing has been a Philly “supergroup” called IN THE POCKET. Started by David Uosikkinen , drummer for THE HOOTERS, POCKET has been paying tribute to songs and artists who are essential to the history and flavor of Philly music. Started a couple of years ago, the project also benefits the music programs at SETTLEMENT MUSIC SCHOOL. I attended SETTLEMENT in Germantown when I was a kid and learned music theory and tried to learn piano and trumpet. I did better at learning how to ride the “E” bus and eat at the Linton’s at Germantown and Chelten Aves.


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