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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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.

[Pulmonary] Of Anniversaries, Happy And Happier

Anniversaries are odd things. Because the word is often proceeded by the word “Happy”, you tend to think of Hallmark moments and celebrations. Yet, all of these words, when absent of the qualifier “happy” can take on a lot of very different meanings.

This month is the 2nd anniversary of a hallmark moment for me that would not initially be seen in even the same town as the adjective “happy”. However, I still choose to celebrate it, because a celebration reminds us of how far we’ve come and how far we need to travel to get to the next “celebration”.

This month is also the 5th anniversary that deserves the word “happy” leading it proudly. For the sake of proceeding in a calendar fashion, I’ll visit that celebration first.

5 years ago, on a Friday the 13th in the month of April, I weighed over 420 pounds. I had been big for a long time, but when I turned 50, all of a sudden things changed. I was still outwardly the same person, but in my mind’s eye, that was no longer something I wanted to accept.

I used to give a lot of presentations and speeches concerning the video industry and other topics. As I planned for these events, I had a mental picture of myself successfully imparting my knowledge and ideas, and looking much thinner. It was a pleasant and professional vision, because I believed in my knowledge so strongly that I felt it so overwhelmed my body image that my message would still be received with great enthusiasm.

However, as I hit 50, I began to feel the “I’m getting older” thoughts elbowing their way into my life. The biggest way that they manifested themselves was in my confidence with others. No longer could I picture myself on stage, making a presentation in front of hundreds or thousands with a confident body image. I saw myself as I was, and it took a toll.

Since I had tried without success to diet, I decided that a scarily big decision had to be made. I had not been hospitalized overnight since I had my tonsils out as a child. However, I investigated having GASTRIC BYPASS SURGERY. I underwent the full procedure, simply because there is no turning back in major life decisions for me. Since then, my weight dropped as low as 250 pounds and my pants fall down much more pleasingly a lot.

This was a hard decision, and while I enthusiastically support anyone who wants to do it, I also advise them to choose a program that will get them ready for it. I had 6 months of psychological and motivational meetings to make sure that I was ready for major surgery.

So, a 5th anniversary of losing 170+ pounds is a good thing, a “happy” anniversary.

Two years ago in April, about two months after I had my second knee replacement surgery, I went to my pulmonologist because I had a terrible cough in the morning, a dry cough that made it tough to breathe and even stand up. My pulmonary doctor checked me over and took me for a walk in the hallway. I did not make it the length of the hallway before my oxygen levels dropped to very low levels.

They admitted me for some testing and then decided that a biopsy was needed. I had lung problems, but all the tests they ran were inconclusive as to just what kind. I never smoked and really didn’t drink, so they needed to see exactly what I had. I had the biopsy the following week and was diagnosed with an ILD (Interstitial Lung Disease) classified as NSIP (Non-Specific Interstitial Pneumonitis). My feelings and fears were as vague as what that diagnosis implied.

It was not a cancer, COPD, or other more easily recognized conditions. I was terrified, since this was just a beginning of exploration. This followed 8 months of highs and lows, from being laid off from my general manager position at TLA Video because the stores were being phased out, to successful double knee replacement that allowed me to bend at the knees, which you really don’t miss until you cannot do that.

If you click the PULMONARY tab in the masthead above or in the KEYWORDS, you will find more details on my disease. I don’t want to repeat them all over again to save space for the current 2nd anniversary update.

Since NSIP is progressive, you cannot cure it, you cannot reverse it, you cannot ignore it. The best you can do is to slow it down to as close to a glacial pace as you can and work to figure out how to live as relevant and useful a life as possible. Knowing that you will probably never be able to return to a work environment, the vague future needs to be rethought and that is what you now strive to do for the future.

I do a series of tests every three months in addition to checkups and doctor visits. These tests usually are two parts and I do them at the Penn Lung Center at the University of Pennsylvania. The tests are strenuous and a little daunting, if only because you know that the next phase of action is based on what these tests show has occurred to you since the last set.

They are not physically strenuous, like the pulmonary rehab exercise sessions that I do a few days a week. The first part is a six-minute walk, which is exactly what is says, except that you have monitors present to gauge your oxygen levels, pulse, heart rate, BP, and fatigue. There is no right or wrong with these tests, you simply proceed at the best pace that you can and periodically give feedback on how you are feeling.

Six minutes can seem really really really long when the walk is in a bare long narrow hospital corridor that looks like a Hitchcock trick shot. However, your progress here shows what you can expect on your own and also boost your confidence when you are out in public, walking to get here and there with your oxygen buddy.

The second set of tests is the most exhausting. These are the PFT’s or the Pulmonary Function Testing. This is not physically strenuous like exercise would be, but it involves a series of breathing tests that are designed to measure your lungs capacity, power, ability to exhale, gas exchange levels, and other things. This usually takes about 25-30 minutes or so. The exertion is purely the result of so much intense breathing in such a short time.

The test themselves are performed with a clip put on your nose so that you must breathe through your mouth. I hate the clip because the sinus pressure is then felt in my ears. It feels likes cabin pressure on an airplane. Some of the tests are perform in a chair, with a mouthpiece attached to the unit. You breathe normally and then must inhale quickly and deeply, then exhale for a few seconds, seeing how smoothly and completely you can clear your lungs.

The other part of the test is conducted in a closed booth that would have intimidated Charles Van Doren on THE $64,000 QUESTION. These tests also include the introduction of some carbon monoxide into your system for the gas exchange, as well as some very odd feeling resistance from the machine as you attempt to inhale and exhale. One of my problems is that, at times, I would cough before it was finished. Totally unavoidable, but a reason to have to repeat it again. My record is four times on the same test.

Finally, I see my specialist and we see what the plans are for the next three months.

The good news is that I am now off of the evil, nasty, weight adding steroids! HUZZAH!!! We have been decreasing them over the last six months. At one point, I had put 45 pounds back on and got really puffy from the prednisone, topping out at 298. However, as I adjusted my diet and got off the steroids, I am now down to 268 and hopefully getting even lighter. The only concern is that I have to monitor the weight loss, because a rapid weight loss could be a sign of disease progression.

I also now get to see the results of my PFT’s, even though I may not really understand some of the medical terms. The tests see a PREDICTIVE level for each test based on my height, age, and weight if I was healthy. This is compared to the ACTUAL , which is what it says, the actual ability of my lungs. In percentages, these results show around a 50% loss of capacity and ability in my lungs, mostly from my left lung. This has been steady for almost a year, so we have this mother tamed for now.

However, this will someday not be the case and when that starts to happen, I will look back on this anniversary to celebrate what I have accomplished so far, and happily look to our next step.

The great thing about anniversaries is how they are numbered for each passing year. My intention is to be numbering these “anniversaries” into a very high and very happy double digit future.

My buddy

My buddy 🙂

Pulmonary: I Got A Phone Call !!!

I got a phone call!

OK, before all of the grammar police go nuts, I know that sentence is bad grammar. PFFFT!

My excitement trumps the time honored rules of writing a proper sentence. So, where was i? Oh, yeah…

I got a phone call!

Let me back track a little bit. As you know from my previous “PULMONARY” postings, I have been participating in the Pulmonary Rehab classes at Lankenau Hospital since early August. Three days a week, I’ve attempted to raise my tolerance and ability level for my breathing functions. Again, my ILD is not reversible, the damage is done, and all efforts from here on out are to slow the progression to a crawl while allowing me to live as full and active a life as I possibly can.

The problem has always been that , by the good graces of the fine health insurance system, these classes carry an expiration date. I was approved for 36 classes, three a week, which is actually on the high side. Of course, this is lifetime, which is very ridiculous and ripe for another blog post someday.

These have been wonderful classes, for my mental health as well as my physical. For 90 to 120 minutes a day, three days a week, I was not allowed to pull a “whoa is me”. I had to strive, I had to try, I had to accomplish, and I had to participate. Anne and Francine, the rehab techs, were there to make sure that I accomplished what I was capable of, not what I was too scared to attempt.

In addition, my workout mate, Felice, kept me laughing and trying even harder. That was the “mental” aspect. The social atmosphere, the cordial nature, the shared and building relationships over these 36 visits were almost like working again, something I so sorely miss. In other words, for 90 minutes, I lived how I wanted, not how a condition forced me to.

I’ll get back to the phone call in a few paragraphs.

The sessions were structured around four basic sets of exercises each day, with endurance and limits extended when possible. In the end, I went from 3 minutes at 1/MPH on the treadmill, to 30 minutes at 2.2/MPH with a 2% grade. I went from 3 minutes of 2 lbs hand weights to 10 minutes of 6 lb hand weights. I progressed from 3 minutes at 10 watts to 12 minutes at 50 watts on the stationary bike.

In all, every area had improved, but most of all, the opportunity to resume some semblance of my old normal life existed again, and that was what I’ve missed.

But all good things have to come to an end, according to the word of Aetna, and after 36 successful sessions, I graduated!

Of course, I had to say good bye to these sessions, and did so with a really sad heart. For the first time in over 2 years, I was truly happy again. While it cured nothing, for a few weeks, I moved forward instead of backwards. My next step is moving to a Pulmonary Maintenance Program at Bryn Mawr Hospital. Essentially, this is the self-guided version of what I just accomplished, but minus the constant monitoring of my vitals and body responses. In addition, while there are good people there, I am not their only focus, so they are there to answer questions when I have them, unlike at the Lankenau rehab when Ann and Francine were there to anticipate my questions and guide me as much as I needed it.

In essence, it is a gym setting, and I can check my blood oxygen and heart rate at the end of each set of exercises, but I no longer am wired up. Oxygen is provided by a concentrator instead of a tank or in-wall hook up. The advantage is that the cost is much less than the rehab, so my meager financials are able to handle it. Also, the sessions are 2 days a week and are not for a scheduled time, though I will continue to go early in the morning, since that gets my day started.

Sometimes, there are others there, but other times, I am alone. There is a TV that only seems to get silly judge shows or FoxNews, so I zone it out. Because of the lack of consistency of who is there when, the other thing it is missing is that feeling of a shared workplace, with co-exercisers to talk and share with week in and week out. That I miss the most.

I started this program on Tues 11/15, but before I went to my first session…

I got a phone call!

It was Anne, Francine, and Felice, my new friends from Lankenau, just calling to see how I was. It was wonderful! I don’t get as many calls anymore because my circle of friends has shrunk and is missing those who I used to see everyday at work or who I used to talk with throughout the year about the video industry.

But, I got that phone call, and it put a big exclamation point on all that I have written about the rehab program. This was something special that I just accomplished, and I did it with a shared community that was there to help, advise, laugh, and share. I may never be at that level again, but I did this and my new friends were there for me again.

I am now excited for the next phone call!

These are the treadmills that I used. I was on the left.

These are the UBE arm exercises. I ruled these.

This is the stationary bike I rode. Went very fast in place.

These were just some of my monitors. Wire me up!

My weights and the exercise guide. I did not color it in, though I wanted to.