My 46th birthday was approaching and just as we habitually change our smoke detector batteries on New Year’s, I made it a ritual that I have my yearly physical near my birthday, although there was one aspect of the visit that always made me forget my birthday. In fact, I had now been more than 3 years since my last physical. My decision to visit my GP was not planned other than the fact that he was away and I would be spared the usual rhetoric that comes from your usual physician. Now do not get me wrong, he is more than a master at his profession, I just figured I needed a visual change and some fresh air. Well fresh it was, as I entered the patient room I was soon greeted by his replacement, a recent graduate of UBC Medical School. In fact, I was her 3rd patient. Well if looks could kill. I should have died on the spot. After some discussion regarding my medical past, my focus had shifted and I soon put my first impression aside and focused on the purpose of the visit.
Having been on hypertension medication for over 30 years, it was decided that an ultrasound of my internal organs was needed. Having attended many an ultra sound during my wife’s pregnancies I was quite accustomed to the procedure and in fact I was quite good at identifying arms, feet, fingers, toes and at times a beating heart. Saw no fingers nor toes, but I did see my heart, pounding. The resulting ultra sound revealed a cancerous stage 2 tumor attached to my left kidney. Now kidney cancer has basically 4 stages…those being, stage 1…surgical removal of tumor, stage 2… surgical removal of tumor and kidney,…stage 3… as with stage 2, with a 25% chance of living 5 years, stage 4…let it be. The surgery was a success; the tumor had been removed along with my kidney. By the time I went home I had lost 15 pounds. Not recommended as a weight loss program.
It was now 3 years into my 5 year survival plan, as dictated by statistics. It felt good to wake up breathing, and during the next 2 statistical years I was confident that I would remain cancer free. It was during a late fall camping trip into the local mountains, that I noticed a change. That morning I had awoken to a crisp layer of frost covering the ground and a gentle mist simmering over the lake, the only sounds were the trout piercing the water in search of breakfast and some intermittent snoring. Although I enjoyed fishing I hated the process of removing this poor fish, who was fiercely attempting to escape from its entrapment. Never mind killing it, gutting it, cooking it and eating it. Motivated I was not, sitting on a camp chair wrapped in a blanket and holding a cup of coffee was more my style. Getting up, I seemed rather stiff on one side and experienced some difficulty with my coordination, it had been rather cold that night and my aging body was not as nimble as it once was, and the increased rigidity had become increasing uncomfortable.
I am not much of a fly fisherman, but I had acquired some skill in the continual casting of the fly line that is so characteristic of this sport. Imagine flicking a line with an imitation “fly” or flying insect indigenous of the area, smartly tied on the end, attempting to naturally attract a trout whose only goal in life was to catch enough insects to survive till the evening feast. Easier said than done, I would say the vast majority of fisherman after a few hours look forward to two eggs over easy and a cup of coffee, available at the camp site. As the days passed and the trip was coming to an end, I began to notice that something was wrong; terribly wrong… I could no longer coordinate my fly line and cast. Pouring coffee became noticeably awkward, moving around had its obvious difficulties. For the others, seeing my predicament it was the norm gone bad, for me, it was no longer the lack of ability but the lack of control.
Over the previous years I had become the minimum standard by which newcomers to our group would be judged. Anyone surpassing me was congratulated and assigned the position of dishwasher. Given my attitude towards fishing, and my casting techniques the only reason I was invited was that I was a good camp cook and my casting abilities kept the others feeling not so bad about theirs. It was a mutually accepted situation, In exchange for the friendly prods I took pleasure in the solitude of the wilderness and the company of my friends. We all understood and tolerated what seemed to others new to the trip as being “insensitive” , we all had a good time, eventually even those with boundaries came to understand and a good time was had by all.
What was a 4 hour ride home became an eternity, my thoughts were now focused on the cancer-related information I had previously researched on the internet. I soon started to become claustrophobic, unable to release my mind from this enveloping cloud of uncertainty. Of course human nature dictates that we think of the worst case scenario considering the possibilities of the recurrence of kidney cancer and its eventuality. The only relief were my friends, who had now increased their level of ridicule from previous years about my techniques to the point where they threatened to leave me at the wharf with a hook line and sinker. Little did they know about my concerns, and even less did they know that their jokes gave me some needed distraction and relief from myself inflicted state of mind.
I had not seen my urologist since my post operative procedure. Although at times I had encountered him in the hospital cafeteria, sarcastically his greeting would be “I see you are still around” as a reflection only of my success. Upon entering his office the greeting was more subdued and the subsequent conversation although not based on any medical analysis oriented itself to the probable causes for the diminishing control of my right side. Given my background my history of cancer and its probable recurrence, I was referred to an internist for further consultation.
The internist was kind and understanding and offered some consolation to the fact that the initial surgery had allowed me to enjoy life. Then I began to understand what is meant by “news at your age is always bad news”. The bad news being that it was more than probable that my symptoms were indicative of the cancer having spread to my brain. This it seems is one of the more popular recurrence of kidney cancer, and that I should mentally prepare for the worst. I was to wait for an emergency CAT scan and MRI. I spent the next 48 hours I reciting any Shakespeare that I could remember, the times tables and anything else that I felt tested my intellect or brain function. I had convinced myself that my brain was functioning normally, even though I had trouble walking and staying balanced.
I spent the next 24 hours after my MRI and CAT scan on the internet researching everything I did not want to know about brain cancer, in fact there was a point that, had I place to dig, I would have dug my own grave. I met my internist with mixed emotions. After the consultation, I had slowly regained my composure and all I could focus on was having rid myself of the burden of the possibility the cancer having returned. As I opened the door, the doctor politely reminded me to check with the front office with regards to an appointment with a neurologist. I responded to the effect that I had seen my urologist prior to our consultation. In my excitement, his final comment of “You may have a neurological problem” had been lost in my relief and had escaped me.
For the first 4 years, Sinemet had been keeping the Parkinson’s disease under control, and to most I appeared as normal as normal could be. Even my fishing buddies saw little difference in my techniques and the usual post fishing commentaries continued. Eventually my participation was impossible, it became physically uncomfortable for me; the comments had diminished, although I did not mind them, things had became very awkward for them. As time passed, it had become obvious that their ability to socially deal with my PD had become a challenge, a challenge that few would chose to confront. As with family and friends, it had mostly become easier to ignore than to accept. I soon came to realize that I was no longer “normal”. For those affected, understanding the complexities of PD is difficult at best, and increasingly more difficult to show compassion and tolerance for someone that once was… it is a hard and emotional journey that at times seems impossible… yet we all have a need to be loved just as we have the need to love… my wish… to love and be loved forever, and to feel normal for a day.