National Cancer Survivors Day ~ Thriving Day

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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!

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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.

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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.

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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.

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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.

zegerWe 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.

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Dealing With My #KidneyCancer (Pt. 2): My Doctor Asked Me “AM I DISAPPOINTED?”

Note: My apologies for a more serious tone for this post. It takes in a fairly long period of some pretty scary questions and finding the humor in the situation was hard.

So, before I tell you how I answered that question, I want to get this post started off with some laughs from my favorite comedian and a Philly guy thru and thru, Craig Shoemaker.

I saw Craig at the Colonial Theater in Phoenixville last month, with a very funny local comedian who I just discovered, Jared Bilski.

maxresdefault Jared opened with a very funny set and in a difficult spot. Not only was he opening for a very funny national comedian, TV, and movie star, but he also had to open for a local Philly treasure, one who could match anyone for mining local references for laughs and yuks.

Jared did an great job. The way I knew this was that his set, like most opening comedian sets, only ran 20 minutes or so. Opening acts have to face the audience cold, with just an MC introduction. That audience just a few seconds ago had been chatting, snacking, talking on cell phones, tweeting, texting, and even peeing, though hopefully not at the same time. The opening act has to come on while the audience is trying to , or supposed to be trying to, ramp down the noise to watch the show. They may even say “Good, this guy coming on means it is only 20 minutes to Craig”.

Jared did something different. His set was so funny that when he was done telling us the true rules of those school zone speed limits (who knew?) and started to introduce Craig, I looked at my watch and was disappointed he wasn’t going longer. A “new to you” comedian whose set you never want to end is a rare thing.

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Then came Craig, who also defied what you would expect from a live comedian. Settling in for what I expected to be an hour long show, I instead got almost two hilarious (yeah, I used “hilarious”)hours of jokes, stories, and even show tunes! Take that, Russell Crowe. He added local flavor for the crowd because he knew that we’d get the references. He had us in the proverbial stiches. Though I have to disagree with how he demonstrated how kids used to hold an imaginary machine gun.

I’m not doing a review of his act here. Just do yourself a favor and look for both of these guys when they play your area. However, I bring them up for two reasons. One, I really can use the laughs right about now, and two, they helped me remember that there is humor in every situation; especially Craig, who draws on personal experience to give some very funny and poignant focus to life issues.

Now, what the hell does this have to do with my kidney cancer?

If you’ve read my previous posts of my medical issues, you’ve noticed that I’ve always tried to find the lightness in the darkness. And I think I’ve succeeded pretty well, thank you very much. And I will for a long time to come.

So, let’s start that long time today…

Dealing With My Kidney Cancer (Part One): The Serious and The Humorous.

The link above is to Part One of my kidney cancer story. Go ahead, click it to refresh your memory. I’ll wait here. …………….

Done? Cool. Then read on….

I spent the rest of February recovering from the surgery. Of course, it came with plenty of restrictions for the first few weeks. It also came with plenty of Percocet for the first week. That was the first win for me. When I take Percocet, I simply sit and relax. The clue that it is kicking in is a peaceful tingling in the toes on my right foot. When I feel that, I mentally let out a contented sigh and just enjoy the calm and lack of pain. I smiled a lot at nothing in particular. I even laughed at a couple of Jay Leno jokes, so you know I was feeling no pain.


There is more to read. Just click here.

Dealing With My Kidney Cancer (Part One): The Serious and The Humorous.

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In the past couple of postings, I’ve tried to show you the short but exhausting unfolding of the discovery of my kidney cancer. I wish it has the grand scale of a trip to OZ but it is just me dealing with something that has to be dealt with. Except for the glorious time spent with my niece at her wedding in Disney World, it was definitely an intense undertaking.

I was not happy about losing a kidney. Knowing that you can live a full healthy life with one kidney notwithstanding, I still was unsure about how this would play out in the future. Though this was offset by the confidence I have in myself, my family, my friends, and my medical team, it still is a daunting thought.

You’ve read the run-up to the operation. Now it’s time for the Grand Opening of my abdomen to deal with this.

One quick note: kidney cancer affects too many people and is serious as hell. It is not pretty, it is not fun, and it can weigh on both your own mental state as well as those around you.

However, as with any adverse situation, the humor has not vacated your life, your funny bone is not cracked, and you don’t have to dive into solitude to deal with this. I pride myself on trying to temper my experiences by making sure I don’t go so dark as to miss all the life in me and around me. So, remember that my blogs are humorous because life always contains it, even in some dark times. You just have to look at it.

One more note: this blog is MY experience. It is not meant to be a guide or the bible on how to deal with kidney cancer. It is simply how I myself deal with it and how I understand it. I have only been at this three months. I’ve still got a lot to learn.

Also, I love Lankenau Hospital. I would recommend it to everyone but that would mean I want you to get sick, which I do not. I may find fault with certain things there, but blame it on the Percocet… or just general crankiness.

 

There is more to read. Just click here.

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.


There is more to read. Just click here.