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.

51O-oRHB+wL._SL500_AA280_

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.

Advertisements

Fly, Eagles Kloutperks, Fly !

If you follow me on Twitter, Facebook, or even as I move around my neighborhood doing important stuff, you know I have some pretty intense passions and I am not shy in talking about them.

One of them is Philly Sports. I get all worked up with all the Philly teams. When Fall comes to Philadelphia, many of the leaves begin to fall in reaction to my intensity during an Eagles football game. Unfortunately, I’ve not yet made a game at Lincoln Financial Field, which may be good for the success of the team, since my attendance at an event does not guarantee victory. With my progressive lung disease eating up my fundage, I have to shout extra loud from home so that the team can be inspired by my fan-acity and WIN!!!

However, thanks to Klout and BarclayCard, I wound up getting a very exclusive invite to the super secret inner sanctum of the Philadelphia Eagles, the NOVA CARE COMPLEX practice facility. Built on the grounds of the old PHILADELPHIA NAVAL HOSPITAL, I had not been on those grounds since high school in 1971.


There is more to read. Just click here.

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.


There is more to read. Just click here.

Pulmonary Rehab 9/1/11: Earthquakes, Hurricanes, And Steps To Climb

Note: At the end of this post are links to previous posts about my lung disease. I’ll keep these links at the end of each subsequent post or figure out how to add a Table Of Contents.

What a week, what a week.

Maybe you’ve heard? My first earthquake, and you knew it was one. We get to joke about it, sounding like a huge truck coming up the street and a flower pot ringing out but let’s face it, we are glad it wasn’t worse (though the speed of the local stations to develop over-the-top graphics and music for it was amazing).

Then came Hurricane Irene and another chance to Twitter and joke about it, but only because the worst we had around my neighborhood was a 14 hour power outage. Irene caused the most damage just when you started to think that the whole storm was a big overreaction. If you don’t believe me, just look north to Vermont.

Of course, all the blowing and shaking coincides with some updates on my pulmonary rehab and my lung disease. While nothing out of the ordinary occurred during it, much good stuff actually happened.

As of now, I am completing my 4th week of pulmonary rehab. It is starting to approach what I hoped it would accomplish. The odd thing might be that while a physical goal was part of the plan, the more abstract goal was what I really wanted the most: to be able to get some real life feel for what my limitations and abilities would be going forward.

I wanted my confidence back.

One of my biggest fears and concerns revolved around how this would affect what I used to do and experience. While I was not a world traveler by any means, I was an active participant in my professional life and a good fun friend in my personal life. I knew my stuff, I am not bashful to say. I shared that knowledge and wanted more. I shared my experiences and wanted new ones. I shared my friendship and wanted even stronger ones.

Once I was laid off and then diagnosed with NSIP, those all seemed to move far away from me, on that very uppermost shelf that you never think you can reach. The chance to experience these again seemed to no longer be an option. Confidence, focus, desire, ambition, and ability all hazed over out of the lack of understanding of exactly where I am and where I go next.

The rehab was in my sights because , while I did not think I would get every answer every written, I did hope that it would point me in the right direction. The rehab is starting to do that.

Take the treadmill. When I started, I did 3 minutes at 1 mile per hour, with my oxygen level at 4 BPS. My blood oxygen level would dip low to 87-88. Three and a half weeks later. I am at 15 minutes at 1.6 miles an hour, oxygen level at 6 BPS. My blood oxygen is 91-92 % . One big difference: my therapist has turned the monitors away from my sight. I therefore have to depend on how I feel instead of how the monitors tell me I feel. That knowledge will help me immensely.

Also helping me is that the gym has Good Morning America on for the 8 AM hour, so I get all the annoying faux-celebrity news and make up tips that even a clown would laugh at, instead of the newsworthy 7 AM sgement. So maybe I am trying to walk away from the TV.

Next up the what I’ve called the “fantasy ice cream making machine”, which I’ve learned is a UBE (Upper Body Ergometer ). This is very similar to when I was a wee lad and would turn my tricycle upside down and spin the big wheel with my hands. There is much more resistance now, except for when I would turn my brothers tricycle upside down. Then all hell would break loose.

I’ve increased from 5 to 9 minutes with increased resistance as well. In this room, there are only the walls and some inspirational posters that are definitely less annoying than HANG IN THERE KITTY posters. There are no monitors, all my breathing and body effort are measured on a self-scoring numbered scale. This causes the least feeling of tiredness and shortness of breath and the most instances of daydreaming since I’ve memorized those posters and every inch of the wall.

The exercise bike is back in the main room and therefore back in view of Good Morning America. Josh Elliot is riding a camel, some woman has 15,000 pairs of shoes and a reporter tells me that dollar stores are cheap. News you can use.

I’ve gone from 5 minutes to 9 minutes on the bike and increased wattage resistance. There is much more visual stimuli in main room but I still manage to stay away from looking at monitors.

The hand weights have gone from 3-4lbs per arm and will be increased to 5 lbs Friday. We have gone from 5 to 8 minutes and I’ve gotten better at not looking like a cartoon drawing while following the cartoon instructions.

Wednesday, we attacked a flight of stairs. Yes, that is a fear, a barrier, and a goal. While I went up one flight and back down again, I was able to do four steps at a time with normal strides before feeling a bit winded. Since this was the first time, my old friend apprehension came back to visit, the fear of what I could not do before I tried to do it.

I did learn that the pursed lips breathing is much more effective than the habitual panting that I have done when out of breath. Pursed lips bring the blood oxygen level up more quickly. Again, nothing earthquaking, or shaking, but a hoop that needed to be stepped through.

One of the great fears and sadness for me has been the thought that I am not only stagnant on what I can do physically, but that I am also stagnant on what I can earn and monetarily help with. I have no desire to be a burden but I do have a desire to contribute on my own when needed. Having the disability check means that there is income every month. Having the ability to cover the expenses can be tough.

I will be meeting with a local foundation tomorrow to see about some help with the medical expenses. I can use the help and support and hope that this is also the step that allows me to find a way to contribute and organize my finances more effectively.

I have a few really great angels in my life right now and right now I can use one more.

My ultimate goal is to be an angel in return when needed. Clarence, I can use some wings.

More to come…

PREVIOUS PULMONARY POSTS:

Pulmonary Rehab 8/19/11: When We Last Left Our Hero…

Pulmonary Rehab 8/17/11: Adrian Is Doing Well. Give Him A Sticker.

Birthday Wishes And Pulmonary Dreams 8/11/11

Pulmonary Rehab Tales 8/10/11

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words