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

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.

Let’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.

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.

I 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.

I 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.

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.

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.

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.

We 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.

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

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.

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.

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.

FALLING SKIES: DEATH MARCH/ REVELATIONS

NOTE: You can find a list of my previous FALLING SKIES and TV related blog posts here at the Falling Skies (and other TV talk). These are listed in reverse order.

Falling Skies has been on the move this year. Last season, except for the movement out of Boston in the pilot episode, the 2nd Mass essentially stayed headquartered at the high school, defending against attack. They knew they had to move, but when?

The second season has answered that. With a couple weeks to go, the 2nd Mass has moved from Boston to Charleston, and has had episodes set at an abandoned airbase, another southern city, and an abandoned hospital, not to mention the first in the Boston suburbs. So much movement has allowed for a lot of energy and not a lot of rest for the weary or the viewer. It has also led to a lot of eye opening discovery of new survivors and subversives.

It was only right that as the 2nd Mass heads towards the climax of its second season, it would ratchet down the action and allow for both a breather and some personal discovery.

A couple of notes: First of all, this episode didn’t not have an appearance by the character who has become the center point for the story, Ben (Connor Jessup). Other than the recap at the top of the show, Ben is somewhere out there, doing what he needs to do. He is of course referenced in the show numerous times, but his absence allows the show runner and writers to look at the other characters more closely, to allow for us to learn who they were and are, and maybe might be.

This also didn’t feature an abundance of action. You had a few “what’s that up ahead” trick moments but there was no real confrontations, no physicality. The skitters are afoot, but the 2nd Mass is learning more about themselves.

The family unit was front and center in the show last week, both from the humans and the skitters. In particular, we are learning much more about how Tom Mason (Noah Wyle) is dealing with his sons now. We know that they were a great loving family back before the invasion , but of course, that dynamic was affected by the loss of wife and mother. (Still curious to hear more about her.)

Now, Tom Mason is not only struggling with learning how to command as well as teach, he also has to learn how to relate to his family that is growing up quickly and in ways that he never imagined. Tom has never seemed to doubt Hal (Drew Roy) and his ability to be on the front lines. Because of his time with the aliens, Tom has struggled to come to terms with Ben, to realize that Ben may actually now have a great purpose to fulfill.

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.