Month: February 2018

You don’t look sick…part 2

“How are you feeling?”

I ended the first installment by recalling my brief bout with Testicular Cancer in the late 90’s. It was a formative moment. During my recovery, albeit a short one, I did some serious soul-searching and eventually re-evaluated my entire life.

I decided to explore the job market outside of my little comfort zone. I envisioned all of the upcoming moments with the children that I would miss due to my schedule. The restaurant life was indeed getting old, my back and legs were my livelihood and the benefits were abysmal. When I was forced to take a weeks vacation to recover from Cancer surgery it became painfully obvious that I needed a job using my mind and my degree that also had decent benefits. While rehabbing, I applied for and eventually achieved the job that would be the stepping stone to the best job of my life.

I also realized that this was my second real brush with my mortality. If you have been following my story, you know that I have kidney disease. I have never mentioned my motorcycle accident.

Just ten years before I was hit by a drunk driver. I was hit on the left side and pushed off of the road. I went off the bike, over the bars into a guardrail. I broke 3 ribs and fractured 4 vertebrae. My only memory of the incident was gasping frantically for breath and blacking out. My next memory was waking in the hospital. I had gone into shock. I spent 3 weeks in the hospital, followed by wearing a back brace for 6 months, and I was unemployed. This is the event that led me to the restaurant. Now 9 years in, I was “Billy one-nut”, still dealing with back issues from crashing my bike, and beginning to experience regular symptoms of my burgeoning kidney disease. It wasn’t debilitating at this point, but it was becoming a part of my daily mindset and not just an “episode” here and there. It would also be the beginning of the “how are you feeling”? phase that we with chronic illness deal with.

First, and I think that I speak for most of us with chronic illness, let me say that I honestly appreciate someone inquiring as to my well-being. It beats the living hell out of the popular greeting of “’Sup?” any day. It shows consideration and familiarity. Speaking only for myself, when people routinely greet me with a “how are you feeling”, it’s official. I’m the sick kid. By my logic, which is admittedly questionable at best, my illness has defined me. I was not going to let that happen. I kept at it at the gym, I (politely) dodged questions about my health, walked upright even when hurting and eventually it went away.
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It worked for me. My stubborn, bullheaded nature allowed me to fool my kids, appease my wife and keep my job. The family knew but didn’t dwell on it because I didn’t give them a reason to. My boss didn’t know until it was revealed in 2008 that I would definitely need a transplant.

IGA Nephropathy is a rare kidney disease, and like me it is an unpredictable smartass. It lays dormant for years on end, giving you the illusion that it’s not a big deal and then it pops up, robs you of a huge amount of function and says “remember me”? My esteemed team of physicians had done nothing up to this point other than manage symptoms, for IGA is so unpredictable they really didn’t know what would happen. In 2008, when it was confirmed that I would definitely need a transplant I had to tell my family and my employer.

My wife’s reaction was priceless. True to her personality, the “how does this affect me” gene reared its ugly head and she accused me of deceiving her. I have forgiven her since but I will never forget her response.

“If I knew you were that sick I never would have married you.” Normally a stalwart person, that one stung me. She apologized but it was too late. Her rationale was that I was going to die and leave her a widow with 4 heartbroken children. I reminded her that I had warned her when we began dating that I had an uncertain future health-wise.

My employer was very supportive. In fact, they embraced it. They would prove to be one of the only bright spots of the entire ordeal. The downside…everyone knew what was going on, I was now the sick guy. The day had come where every greeting was the default, dreaded

“How are you feeling?”. Here we go

 

To be continued…

crack in the foundation

My mother’s new boyfriend has become a weekly house guest. Because he lives almost 80 miles away his routine is to show up on Friday and leave Monday morning. He originally stayed in the guest room but now he’s in her bed. My father’s bed. Heavy sigh. Let it go.

I like him. He’s a big, polite 70-year-old Vietnam Veteran and retired State Trooper. He’s nice to my mother and he and I get along well. Even if we didn’t it doesn’t matter I’m not shagging him my mother is.

Predictably, as his familiarity and comfort level increase, he is showing some additional sides of his personality. A few telling comments containing “folksy racism”, unwelcome input (my favorite), and indications that he thinks he is a bigger part of this household than he really is. My mother is noticing it, is ok with things for now, but I am comfortable that she will handle it if she decides it is a problem. As for me, I am always waiting for the other shoe to drop.

This morning he made a mean comment about our dog to me. Big mistake. I even said “you’re in the wrong house then big guy”. “You’ll go before he will”. He asked if I was serious.

“Hell yea I am. We love dogs in this house.”

I can’t help but wonder what Mom’s reaction would have been had she heard that? I have a feeling that this is only a matter of time.

“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.
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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…