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.

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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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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. 😉

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.


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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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