Dealing With My #KidneyCancer (Pt. 2): My Doctor Asked Me “AM I DISAPPOINTED?”

Note: My apologies for a more serious tone for this post. It takes in a fairly long period of some pretty scary questions and finding the humor in the situation was hard.

So, before I tell you how I answered that question, I want to get this post started off with some laughs from my favorite comedian and a Philly guy thru and thru, Craig Shoemaker.

I saw Craig at the Colonial Theater in Phoenixville last month, with a very funny local comedian who I just discovered, Jared Bilski.

Jared opened with a very funny set and in a difficult spot. Not only was he opening for a very funny national comedian, TV, and movie star, but he also had to open for a local Philly treasure, one who could match anyone for mining local references for laughs and yuks.

Jared did an great job. The way I knew this was that his set, like most opening comedian sets, only ran 20 minutes or so. Opening acts have to face the audience cold, with just an MC introduction. That audience just a few seconds ago had been chatting, snacking, talking on cell phones, tweeting, texting, and even peeing, though hopefully not at the same time. The opening act has to come on while the audience is trying to , or supposed to be trying to, ramp down the noise to watch the show. They may even say “Good, this guy coming on means it is only 20 minutes to Craig”.

Jared did something different. His set was so funny that when he was done telling us the true rules of those school zone speed limits (who knew?) and started to introduce Craig, I looked at my watch and was disappointed he wasn’t going longer. A “new to you” comedian whose set you never want to end is a rare thing.

Then came Craig, who also defied what you would expect from a live comedian. Settling in for what I expected to be an hour long show, I instead got almost two hilarious (yeah, I used “hilarious”)hours of jokes, stories, and even show tunes! Take that, Russell Crowe. He added local flavor for the crowd because he knew that we’d get the references. He had us in the proverbial stiches. Though I have to disagree with how he demonstrated how kids used to hold an imaginary machine gun.

I’m not doing a review of his act here. Just do yourself a favor and look for both of these guys when they play your area. However, I bring them up for two reasons. One, I really can use the laughs right about now, and two, they helped me remember that there is humor in every situation; especially Craig, who draws on personal experience to give some very funny and poignant focus to life issues.

Now, what the hell does this have to do with my kidney cancer?

If you’ve read my previous posts of my medical issues, you’ve noticed that I’ve always tried to find the lightness in the darkness. And I think I’ve succeeded pretty well, thank you very much. And I will for a long time to come.

So, let’s start that long time today…

Dealing With My Kidney Cancer (Part One): The Serious and The Humorous.

The link above is to Part One of my kidney cancer story. Go ahead, click it to refresh your memory. I’ll wait here. …………….

Done? Cool. Then read on….

I spent the rest of February recovering from the surgery. Of course, it came with plenty of restrictions for the first few weeks. It also came with plenty of Percocet for the first week. That was the first win for me. When I take Percocet, I simply sit and relax. The clue that it is kicking in is a peaceful tingling in the toes on my right foot. When I feel that, I mentally let out a contented sigh and just enjoy the calm and lack of pain. I smiled a lot at nothing in particular. I even laughed at a couple of Jay Leno jokes, so you know I was feeling no pain.

But all good Percocet prescriptions must come to an end. Then Tylenol has to pull the weight. Tylenol is cool but in no way will it make Jay Leno funny to me. The major pain for me was not the incisions on my body. It was the cuts to my abdomen muscles which were the true shockers when I made the wrong move with my body. I made a ton of wrong moves.

I am a side sleeper. I am not a back sleeper. Sleeping on my back annoys me, but the loudness of my snoring annoys Southeastern Pennsylvania. However, with the wounds I had, sleeping on my side was out of the question. Even sleeping on my back for more than an hour was a bother, so I spent the first week sleeping in my good ol’ recliner.

That was interesting. While it relieved the pain in my wounds, it made me walk like the Grateful Dead’s “Truckin’” guy. Even worse, my bed lied to me. It looked soooooooo comfortable, so cool, so inviting. It mocked me. I would lay down in it and it would kick me to the curb. It took me a week to tame my mattress but I finally did. To sleep, perchance to dream.

Even more surprisingly, the pain in my abdomen seemed to go away faster than I expected. While it would be three months before the muscles would heal, I actually felt good. I had energy.

And my pee was yellow. Yeah, it was only coming out of one kidney, but for the first time in over three months, I didn’t get mental anguish watching it come out deep red. I could pee with the best of them. I could pee on demand. I could pee when I wanted to, not when I was compelled to. I was pee-mancipated!!!

Dr. Michael Hagg, my urologist and surgeon. Magic hands.

Dr. Barkus Dogby, may or may not be a real doctor.

The beginning of March finally got me to the next stage of my journey, a follow-up visit to my urologist. Dr. Hagg went over the results of the operation. The tumor had been huge, over 12 inches and 5 pounds and had been difficult to get out. The tumor had not only surrounded my right kidney, it had breached the capsule around the kidney and had adhered itself to my intestines. While they were able to scrape the tumor away from the intestinal tract, it left microscopic particles that were of some concern. While the cancer had not spread to my other organs, the particles could and probably would develop over time .

Dr. Erik Zeger, my Oncologist at Lankenau Hospital, Wynnewood PA.

Because of that concern, it was time to call in an oncologist. Enter Dr. Eric Zeger. Another fine doctor at Lankenau Hospital. I have now been here so many times in the last few years, Foursquare should add a category above Mayor, because my Lankenau check-ins lapped every other mayor who ever mayored.

The visit was actually fun because of two things. One, Dr. Zeger seemed to recognize me from somewhere, but I could not figure out how. It was weeks later that I finally figured out that he had seen me once back in early 2010 for some hemotology blood work to check my hemoglobin levels. I weighed about 60 pounds more and I only saw him for about a half hour then.

Yet, he remembered me. That made me feel a whole lot better about him.

The second was that he felt that I sounded like Alan Alda. I had never had that said to me before and we spent the next half hour showing off my Hawkeye impression for his staff. Suffice it to say that he had a younger staff that had not watched M*A*S*H and had no idea who Alda was. One person realized who it was when I mentioned that he was in the recent film WANDERLUST with Paul Rudd and Jennifer Anniston. It made for a most unique doctors visit.

It was at the oncologists office that I got my first good news. I was now down to 218 pounds, from 242 at the end of January. While 5 pounds of that was my tumor thingee, that still impressed me, but caused some concern. If you know my history, you know that as far back as 2007, I weighed 421 pounds. After gastric bypass, I was able to get down as low as 255 pounds, but never lower. In September of 2012, I actually had gone back up to 290 pounds.

Below is a quick composite of my body types since 2000 to show you how much I had changed.

While not panicked, my doctors wanted to make sure that the weight loss wasn’t a sign of another problem. So they “suggested” that I was at a good weight and that maybe I should not lose anymore right now. OK, I can do that.

A good sign of how much weight I had lost was my clothes. Since 2007, I had gone from a 56 waist to what was then a 40 inch waist. That felt good. What wasn’t so good was that my waist moved faster than my wallet could afford. I continued to wear jeans that were a bit too big. I therefore continued to suffer the surprise of my pants falling down in places like the Target checkout line.

Another “benefit” of finally getting the tumor out was that I no longer had coughing fits after meals. Somehow, it seems that the tumor was fighting my airwaves for space and that removing it helped. It might be perverse, but my kidney cancer helped my appetite.

Now, I got the more detailed downer news. Dr. Zeger informed me that my cancer was Stage Three http://news.cancerconnect.com/stage-iii-renal-cancer/ and that yes, there was a definite possibility of cancer reoccurring. The particles left behind will probably develop in the future.

There were two choices to make: oral chemotherapy, which would hopefully kill off these cells before they ever have a chance to become cancer, or to simply wait. Because of my lung fibrosis, this was not an easy decision. Normally, I’d just attack it head on but because the treatment could have a detrimental effect on my lung fibrosis, it wasn’t that simple. The wisdom of Solomon would not have helped here.

The short term decision was that my doctor would present the case to other doctors at the hospital to make sure we knew every angle of it. For me, I was ready to charge head on into the treatment. My thought was that I’d rather be proactive than “woe is me” later on if I chose to “wait and see” and didn’t like what I saw down the road.

That decision would have to wait two months, since it was that complicated. In the meantime, I saw my pulmonology specialist at HUP for my normal followup and testing. While my interstitial lung disease cannot be reversed and can only be held in check to progress as slowly as it can, there was some good news. My oxygen saturation levels were the best they had been since I was diagnosed. My six minute walk was as strong as it had been. While not a miracle cure, it made me feel good that something I was doing was actually working to my benefit. It was nice, for the first time in months, not being knocked to the mat in my health battles.

My weight loss also seemed to have a very positive effect of my sleep apnea. I took another sleep study to confirm this and am awaiting the results. Sleep studys are a bit weird. Where I chose to do it tries to have a homey a feel as possible, if your idea of homey is sleeping over your aunt’s house in the 1960’s. It was comfortable but when there are no windows, lights out at 10 PM, a bevy of wires and electrodes wired up to you to monitor your sleep, and the need to actually ask for permission to get up to go pee, it is odd. That last part was a little embarrassing: “Bryan! I have to go to the bathroom!”

So that leads to my last visit to Dr. Zeger and his question. He went over the options again and mentioned how he had presented the case a couple of times to the Friday Doctors roundtable at Lankenau. I went into the meeting prepared to face the challenges of starting an oral chemo treatment.

Dr. Zeger recommended rather strongly that I do nothing right now. My lung fibrosis stood a definite chance of being adversely affected by the chemo treatments. He even looked into a clinical trial that was being conducted at Lankenau but I was turned down for it because they could not accept fibrosis patients or people who were taking Immunosuppressants ( my CellCept). He felt that it was best not to complicate my lung disease battle with a chemo treatment. Instead, he recommended that we monitor any cancer development with regular testing and if we see it, then attack.

That is what led to the question that serves as the title of this post: WAS I DISAPPOINTED? Damn skippy, I was. I had my mind set to move forward, I was and am still tired of being scared. However, I was realistic. I trust my doctors and knew that it took two months of investigation by my doctors to reach this decision. He was not recommending this course of treatment lightly. So, my disappointment has to be put aside to allow me to simply live my life as fully as my body allows.

I’ll simply kick regret down the road a few days, months, and years, and try to feed on positive energy of my friends to keep disappointment at bey.

And I’ll find another way again to discover the humor beneath the darkness. I’ll count on friends and family to get me there.