You don’t look sick…conclusion

This series began as a discussion of what it was like, speaking for myself only, to deal with an increasingly visible illness. It has evolved into me telling my story. I have detailed my struggle to not let my illness define me, to avoid the default greeting of “how are you feeling”? Not because I have a problem with people caring enough to ask, but because I don’t want people’s first thought when they see me is, he’s “the sick guy”.

So, to catch up, I managed to avoid the above problem for the most part through “putting on a good face”. While people knew I had something going on, they didn’t see it on me and it basically went away. My wife called it Denial, and I have to admit it may have looked like it, but in actuality, I just didn’t want to think about it. There was a positive to it, there were people that had known me for a while and were not aware of my health issues that were inspired by my attitude. What they didn’t understand is that I am just a hard-headed guy who has never seen the point of feeling bad for myself. Stay busy, stay productive and hope the sun rises tomorrow. My doctor, post-transplant, would tell me that my denial was the best thing that I ever did. I entered the surgery much fitter and stronger than the typical patient. My wife never forgave the doctor for validating the behavior she detested.

Post-transplant I almost put an end to the “how are you feeling” era. I was up walking 2 days after my surgery, not the week that was recommended. I was back at work in 33 days, not the 90 days recommended. I dropped weight and I had color in my face for the first time. I didn’t look sick. For five years I kept it up. People knew that I was feeling good.

One night in 2016 I was serving a dinner at a Masonic function. I prepared a meal for 85 people all by myself. I was in my element, the kitchen. Moving and grooving, flipping pans and slinging some grub was fun for me. While serving the main course I suddenly grew fatigued and my hands cramped into a claw, making any dexterity impossible. I needed help to finish the dinner, people grew concerned. People who didn’t know me pre-transplant, they never saw the sick me. They wanted to know what was the matter. I knew. It was back.

In 2016 I would lose 48% of function in my new kidney. I would experience symptoms that were highly visible. My cramps happened to the point that I couldn’t hide them, my legs were swollen to the point that I could barely walk. I would contract a lung infection in July that would end up hospitalizing me for the entire month. I was out of work and out of options. I applied for disability. It was finally official, I was the sick guy.

By now, the fight was gone. I had hit bottom. That’s when I began this blog. To reap the cathartic, therapeutic benefits of putting my thoughts to paper. I embraced my illness, stopped trying to hide it and find a way to share a bed with it. Now, it is all about accepting that I have a condition that needs to be controlled, embraced and placed front and center. My reward for finally doing this is I have achieved so much peace of mind. Once you are at the very bottom you have nowhere to look but up.

20 years old…” how are you feeling?”. Good
30 years old…” how are you feeling?”.  Ok, why do you ask?
40 years old…” how are you feeling?”. I can’t tell you, so I’ll say great
45 years old…” how are you feeling?”. I would love to tell you, but I can’t afford to. I’m ok
52 years old…” how are you feeling””. I’m alive, thanks for asking.

There’s no escaping it anymore. Some days I feel great, other days I have an episode of crippling cramps in front of 5 old ladies while volunteering at the food pantry. Most people I know are aware that I am pursuing a disability claim.  I do my best not to look sick otherwise.

The other day I posted a picture on FB of the mountains of snow we have up here for my MA friends. The first person who responded didn’t ask about the snow, instead, she typed…wait for it…

How are you feeling?”

I replied, “Fine, thanks for asking”.

“you don’t look sick”…part 1

I went to my local hospital yesterday morning for some bloodwork. I have a “standing order” for the same tests monthly to monitor my kidney function, or as I call it the “how much have I lost this month” tests. The laboratory waiting room was small and crowded, I swear the room was built as an afterthought. I checked in, surveyed the room, saw a lot of sniffling people and the germaphobe in me chose to stand in the doorway until called.

When called, I trudged through the sea of inconsiderately outstretched legs, carefully dodging the onslaught of germs that I sensed were targeting me as if I had disrupted a wasp’s nest. After my blood was drawn I was led to the door and the Nurse said, for all the waiting room to hear, “ok now head over to Oncology they’re expecting you”. All eyes were on me. As I again navigated the sea of people standing between the door and my exodus an elderly gentleman softly said to his wife,

“he doesn’t look sick”.

I thought about responding but decided against it. Maybe it was the word “Oncology” that threw him, he didn’t know that my iron infusion was administered in the Oncology lab. After I checked in to the Oncology clinic, I sat down and reflected on a similar incident many years ago.

I was treated for Cancer in 1998 at age 31. At that time, I was the proud, doting father of an 18-month-old little girl and my wife was pregnant with my son. I was working full time at the restaurant at night, my days consisted of playing with my daughter and hitting the gym during her morning nap. I was in great shape, the best of my life. I was training for power at the gym, moving a lot of weight for at least 90 minutes a day. One day I was training legs and I attempted a press of 1300 pounds. It was a lot of weight, the kind that requires a guy on each side of the machine to bail you out if your knees pop off and stick to the ceiling. I completed 3 reps, rolled off of the machine and immediately threw up all over the floor. The pain in my core was excruciating. I called my doctor immediately. After I was examined, my doctor asked what my plans for the afternoon were. I told him I was going to work. “Call in sick,” he said and suggested that I call my wife next. I knew it, Cancer.

That nagging pain in my groin was actually a golf-ball sized tumor. It was my favorite, “Lefty”. “Lefty” had to go, regardless of whether it was benign or malignant. My blood work had already indicated that it was malignant. I was asked if I wanted a prosthetic Lefty, I declined. I was married after all, who is going to see? As an aside, I would like to borrow Mr. Peabody’s time machine right about now.
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The surgery was scheduled for 10 agonizing days later. To know that you have something inside that is silently trying to kill you and having to wait 10 days to have it removed is torture. I was incredibly aware of it, as if the creature in Alien was planning its moment to pop out of me and wreak havoc. In the meantime, I went to work and acted like everything was just fine. I told one person what was going on, my boss, because I needed to schedule the time off for surgery. He told some people and sure enough, it got out. People started treating me differently. As the kitchen clown, I was a lightning rod for jokes and abuse. My days were always full of banter, it made the day pass. We were all like that. Now, everyone was being so fucking NICE to me I couldn’t take it. I was now the sick guy. People get like that when they hear the “Big C”. There’s nothing they can do and they don’t know what to say. I let them do their thing and I did mine, I deflected it and moved on.

The surgery was successful. And timely. The words “Just in time” were used in conversation. Now in a specimen jar, Lefty was indeed malignant. I would not need chemo, only a long steady regimen of Radiation therapy to my abdominal region.

The Radiation therapy would prove to be a breeze for me. My Oncologist was noticeably shocked at how well I handled it. He would tell me of how patients had to stop treatment due to fatigue and nausea. I was going to the gym and then work after a mere week after my surgery.

Work would prove to be difficult, but not for the reasons you would expect. My strength wasn’t there but I was able to do my job. If they let me. My co-workers, who normally abused me were offering to help me lift things, giving me easier assignments, asking me if I wanted to leave earlier. The worst thing of all is they were being so nice still. No abuse of any kind. I couldn’t take it so one very hot August night I decided to put end this nice stuff.

We were all sweating, it was 95 outside and we were inside a kitchen with 8 ovens, 4 fryolators and 12 saute stations going full tilt. I was sweaty and miserable and I knew I had to pick my moment. I walked into the back kitchen area during a lull and they were all there. I dropped my apron to the floor dramatically and said, “Jesus, I’m sweating my BALL off here!” They erupted in laughter, the tension instantly disappeared. My buddy Joe looks at me and says “so it’s on?”

“Yes, it’s on. Stop tip toeing around me I hate it!”

The abuse was rampant and apparently retroactive. “Billy one-nut” was born. And I loved it, things were back to normal, finally.
cancer joke

One day soon after, as I was leaving the radiation center, I hugged my dear nurses’ goodbye and walked through the waiting room. As I passed an elderly couple, the husband leaned in to the wife and said: “he doesn’t look sick.” I stopped, turned to him and said’ “that’s the idea”.

To be continued…