Money Is For Chocolate And The Zits Are Free: The Return Of My Kidney Cancer

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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.

milk_chocolateLet’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.

I’ll wait right here.

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

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

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.

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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.

indexI 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.

0175d71c08edfdf5352130d45909070a8fac3cc2d2I 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.

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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.

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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.

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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.

20090922062143205We 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.

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Watch a little after the 3 minute mark for a nice treat. 😉

WHEN C-17 MET A-19: TALES IN MY POCKET

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If it hasn’t been obvious by my Twitter and Facebook feeds, I am passionate about what I am passionate about. Sports, film, TV, bad jokes, my family, my friends, my doxys, Philly and especially music. Nothing in this world can take you back to a time and place and change your mood in a flash like 3 minutes or so of great music. Because the best music doesn’t waste time or take hours or weeks to develop, it has the power of immediacy , the power to grab you at the outset, and the power to get stuck in your head, be it amazing or kind of corny (thanks, Ylvis and your damn fox sayings).

But every so often, out of that music comes something more. That is exactly what has happened recently. Elsewhere on this blog, you’ll find posts about why I am where I am professionally and health wise, along with a piecemeal history of what I was able to accomplish before my professional life ended with my lung disease.

boardaward One of the things from that past life I’ve missed has been the chance to create and promote, to spread the word and ignite the same passion I felt for a film or project. I look back with pride on the two dance marathons for Muscular Dystrophy I created at Villanova University in the 70’s, the events I organized for a national trade association that focused on home video retailers, and the various promotions I held over the years at my video stores in Ardmore, Conshohocken, and the Philly area. I am especially proud of what I accomplished in the promotional area when I was with TLA Video (one day I’ll go into more detail of why my time with TLA Video was a sometimes frustrating time of my life, yet it was my greatest accomplishment).

My favorite promotion is still when I was able to attract almost 700 people to my 4th and South Street store for an in-store appearance by the great director JOHN WATERS, closely followed by a Chestnut Hill in-store World Series party with the Phillie Phantic.

dmi 055I also took great pride in meeting challenges that allowed me to interact with others in a common effort, such as the SEPTA road construction project in Chestnut Hill that severely limited access to our video store and other businesses for months. I wound up helping to lead an ad-hoc group of businesses to develop emergency business plans and promotions to minimize the impact during construction and come back strong when Germantown Avenue finally reopened.

So, when I now meet and follow someone who does promotion, I always am thrilled to spot even a little of the same passion I used to have in my work. I don’t have that outlet anymore other than the old “word-of-mouth” method, and I think I’m damn good at that.

However, I can vicariously experience the old thrills watching others still actively involved in PR who truly love the project or event they are promoting, not just working the press for coverage and then moving on to the next supposed big idea. Recently, I’ve met someone who does just that, even though she is involved with businesses that I have not had professional experience with, but for which I retain passion about.

I’m talking about Dallyn Pavey, owner of DISH PUBLIC RELATIONS


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[ PULMONARY ] Change Reactions

(Previous Pulmonary posts are listed at Previous Pulmonary/ILD Posts or just click the PULMONARY/ILD button in the link bar)

(A quick note: I tried to keep the tone light but I had trouble doing that, despite rewriting this numerous times. I’ve tried to keep the paragraphs short and segment the portions with line breaks to allow you to more easily read, and hopefully enjoy, these ramblings. Oh, and I left you a couple of my favorite musical treats at the end to leave you dancing.)

Before:

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And After:

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The” before” picture is my old oxygen buddy, a shoulder slung oxygen tank that I have been wearing since April of 2010. Like Robin, Tonto, Boo Boo, and others, it has been a faithful companion. But, it has been replaced by the “after” picture (well, not the picture but an actual physical thingee), the Invacare XPO2 portable oxygen concentrator. As this blog post meanders forward, this simple switchout of units will hopefully parallel what the last three months have meant to and done for me. At the very least, it will allow me to center my thoughts.

The “four months” I refer to in the title of this blog post are the months from August thru November 2012, a period of time that has been a busy and eventful for the rest of you as it has been for myself, in its own way. These four months are a milestone in my progress. These four months are pure me and where the “me” is going.

August marked the end of my 3rd year of being officially disabled by my interstitial lung disease, even though I’ve had it for an indeterminate time longer. We still cannot pinpoint how or why this developed, other than postulate that it happened as a result of some dust substance inhaled somewhere while working. In any case, for my sanity, that really doesn’t matter anymore. What mattered in August was that, for the first time since I have contracted this, my life would change in another profound way.

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I had to figure out Medicare…

…At age 56. What I had always seen as the( still ) prime of my life. That alone has been enough to dwell on, but then I reached the distinct pleasure of choosing a Medicare plan or plans, which is kind of like choosing from a large buffet menu when you would rather not have to eat there.

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I automatically received Medicare Part A because of all the taxes paid over my 37 years of working. That is essentially the free appetizer, good stuff but hardly filling the plate. If I wanted more coverage, I would have to belly up to the main steam table, where Medicare Part B was on the menu. Part B adds $99 (and soon more) to the bill, giving you more meat but still leaving the plate a bit empty.


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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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