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.

Where Have I Been??? Reasons To Believe.

Hello, all.

As you can see, it has been about 5 weeks since I’ve posted last. I’m getting a couple of things prepared right now to get this blog back on track. I hope to make it both entertaining and interesting for you as well as useful and productive for me as I face down my illness and try to maintain relevance.

I have also been experimenting with sites like Klout and Empire Avenue to find ways to build connections that are good for all of us, so stay tuned.

I need to show you nothing but my best, so that the bar is constantly set higher for me to achieve. Stick with me, and you won’t be disappointed.

Watch for postings and tweets for the next, and more frequent, posts.

While you are waiting, here is one of my favorite Jimmy Webb songs. There is no hidden meaning, just helps me get back from a brief absence.

[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 🙂

One Year After My Dad

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I’ll start this post off by admitting that this was not what I was writing. Oh, the general subject remains the same, but actions, reactions, and sentiments awakened can make things do a sweet 180 at times.

This past Sunday, January 15th, was the 1st Anniversary of the passing of my father. I’ve chronicled his illness and hospital stay in previous posts. I’ve also chronicled the impact it has had on me as I battle my ILD, my progressive lung disease. His passing refocused my own future (health and life) in a way that I am still figuring out.

However, this was the last special date in a long year of melancholy firsts, coming to terms with the missing spot at the dinner table, the chair in the living room, the passenger seat in my car, the empty booth at the diner that Dad loved. The missing presents under the tree, the missing buddy to watch the Phillies, Eagles, Sixers, and Flyers, the gentle voice quietly singing along to his favorite songs.

The man who I had hoped would still be there for me as my disease progressed.

This was the 1st Anniversary of his passing and therefore, it brought a year of reflection to a close. The year closed, but not without coincidence. It is just those coincidences that caused me to hold the post I was writing and start anew.

Basically, I was closing out a tough year, but Dad would have none of it.

To begin with, the previous Friday, we went to my brother’s house to celebrate my niece Lauren’s birthday. My brother Joe always has a full house of friends and family for these events and my sister-in-law Richarda makes sure that their plates are full of good food as well. My dad loved to go to these things because he would see kids, kids that he would love to be Grandfather to.

My dad normally sat in the corner of the couch, his dad belly protruding like a ledge and his white sneakers stretched out on the floor. Because he was older, he was served by others in the living room. This night, I was sitting at the end of the room and saw Lauren bring a piece of birthday cake in to give to the man with the white sneakers. I thought to myself that I hope Dad likes this cake. I then realized that it wasn’t Dad on the couch, it couldn’t be.

My sister Julie and my sister-in-law both had similar experiences that night. It was then that we realized that, as I said above, Dad loved these parties and he had no intention of letting the afterlife keep him from sharing birthday cake with loved ones.

Then, on Saturday, I stumbled upon a couple of DVD’s that I had burned years ago from our old VHS tapes of our trips to Disney World. The DVD I picked up was shot in 1989, and was of our family at the HOOP-DEE-DOO REVUE at Fort Wilderness as well as on the carousel in Fantasyland. My dad loved these trips, but this particular trip was even sweeter for him because my sister Julie and her daughter (my niece) Julle came along. Little Julie was around 3 years old and was having a grand time hooting and hollering.

Now grown up, Julie is planning her wedding to take place in Disney World (Like PopPop, like niece). The planning has been going on for a couple of weeks, and it has always been in the back of our minds that Dad would not be able to attend something he had always dreamed about. He loves Little Julie, called her PUMPKIN.

As we watched the carousel on the DVD, we were pleasantly surprised and deeply moved to see Dad, all smiles and wearing his ever-present cap. He was doing what he loved, helping his grandkids have a great time, in this case, holding onto Little Julie as she heads around the merry-go-round. The pure expression of happiness on his face and the excitement on hers were what Dad lived for. And by guiding us to the long forgotten DVD, he was telling us he will be right there with Julie on her wedding day.

Sunday was the anniversary, and my sister Julie and my brothers Tommy and Joe went with me up to my Dad’s gravesite in Morris Cemetery in Phoenixville, PA to reflect on this day. My brother Joe drove up separately and we met at the cemetery.

We were going to meet at a certain time, but as I approached Valley Forge, Joe informed us that he was running late. Julie, Tom, and I had time to kill, and were not sure what to do. So, I did what my dad would do. I made the next left off of Route 23 and proceeded to drive through Valley Forge.

Now, I’ve taken Rt 23 plenty of times over the years, but mostly as a way to get to or from Phoenixville. It had been many years since I explored the actual park roads. As we drove along, we saw things we had not seen in a long time, cannons that I was sure I had posed on as a kid, hills and fields I had run along, and views that my eyes had not viewed for years.

We then came upon a familiar open area and realized to much delight that it was the picnic field that we used to go to almost every Sunday when we were kids. We could see the hills we would climb, the trees we would sit under, the field we would play ball or chase games on, and where we would spread the blankets and pop open some semi-frozen cans of grape soda.

So many memories came rushing back, and I wanted to stay, but we had no picnic basket so we moved on. We then went and drove over to Washington’s Headquarters to kill a few more minutes, again doing just as Dad would do, meander around and see the view from the car without a set schedule or route. We drove and we had a great time doing it.

One place that I had not seen before is pictured below. This is a beautiful train station hard by the banks of the Schuykill River near the Headquarters. The train tracks are used by freight but the refurbished station looks like part of an extended commuter rail plan. I need to check that out, but leave it to Dad to show us something new as we did what we loved.

We then headed to the gravesite and sat there for about ten minutes before my brother Joe showed up. The day was cold and the wind was raw but it really hadn’t bothered us all day. We got out to see my Dad, with my Mom and my brother JP on either side of him. It was sad and reflective. However, as we stood there, the wind picked up and the cold felt unbearable. I went back to my car to get a cap and even that didn’t help. We decided it was too cold to stand around. It was almost as if, just as he guided us to fun places we had shared, my Dad was telling us to move along, to get back to life.


We then traveled to my Dad’s favorite restaurant in Phoenixville, O’Gradys. He loved their breakfast bar. He also loved fried oysters and they had them. Joe, Julie, Tommy, and I had a good meal and Tommy flirted with all the waitresses.

All of the above seems ordinary until I started to think about it on the way home. As with my nieces birthday party, and with Julies wedding planning, what we thought we would do was changed. It was obvious that my Dad did not want us to spend the weekend sad. He simply wanted us to spend the weekend with him. He guided us to memories, he showed us the happiness again and he made sure we stopped and enjoyed what we had always enjoyed as a family.
He wanted to do these things again and he took us with him just as he did when he was the driver and we were the kids.

That will never change. The day was supposed to be a memorial to my Dad on the one year anniversary of his passing. It turned out to be the best picnic day we had ever had. Thanks, Pop.