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.

30 til 60

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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59th Birthday Bridge Song: Hello Lamppost

FORWARD

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.)

45845_1568489220291_1769207_nnToday, 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. )

ABOUT 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!).

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01c4736ba2d2a1e26159bb30bae69d804d51784113I 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.

Continue reading

A Wayback For My Brother Tommy’s 44th Birthday.

This was originally written in 1999. It was written shortly after he was diagnosed with kidney failure and spent over four years on dialysis. He had a successsful kidney transplant in 2004. When this was written, he had not yet started his decade long love affair with Kelly Ripa. At this time, he actually had a crush on Kitty Carlisle, of all people.

I sat with my brother Tommy and asked him what he would like to help me write about.

This was his blog post. I wrote it and he served as my verbal editor. We wrote this on GEOCITIES (remember that?) but the original page is long gone.

The only change is to remove any dead links.

Happy 44th Birthday, Tommy.

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(These are some of the friends that Tommy made at the concerts.)


There is more to read. Just click here.

For My Dad: On What Would Have Been His 91st Birthday

Below are links to previous blog posts about my Pop. Please read at least one to understand why he was so special to me and why, as I battle both a progressive lung disease and the aftermath a my radical nephrectomy for kidney cancer, I’ll always turn to my Pop for reasons to keep laughing and keep living.

If you hear me say something or see me do something, chances are I learned that from my Pop.

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That’s my Dad. You can call him “Rich”. His co-workers called him “Dick” but my mother always called him “Rich”. I called him “Pop” or “Dad”. For some reason, I don’t remember ever calling him “Daddy”. I never felt that word was strong enough for my Dad.

Calling him Dad was a real sign of respect from me, at least in my mind. When I would introduce him to people or talk to others about him, I always used “Dad”. “Pop” was more playful, more casual, more personal.

“Hey, Pop, do you want to go to the diner?”

“Hey, Pop, did you see the Phillies game last night?”

“What do you need at the store, Pop?”

“There aren’t any Christmas movies on TV in September, Pop. I checked.”

“Yeah, I can reset your watch, Pop.”

“A plain cheeseburger doesn’t mean that it comes without cheese, Pop. Don’t be mad at the server. Just order a plain hamburger.”

“You have to push the ‘TV’ button, then the “cable” button on the remote to make it work, Pop.” (Usually said with exasperation over the phone as I tried to work while he was mystified by the cable remote.)

“Tommy needs you, Pop.”

“I need you, Pop.”

“I miss you and love you, Pop.”

“Forever.”

One Year After My Dad

Dad’s Last Best Year : For Father’s Day

Dad at 15 days

Father’s Day Salute, to mine and yours…(updated for my dad’s 87th Birthday)

My Dad And Veterans Day

Dad and Tom at 1997 VSDA Convention

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There is more to read. Just click here.