Chapter 1: A Feel For Horses - An Introduction

 

A FEEL FOR HORSES

 This is a blog about cancer. I’m writing it because, guess why? Yes, I now have an ownership interest in this murky little disease along with its many emotional twists, turns, and physical pain. However, most of the physical pain to date has come from all the shit they do trying to figure out what’s going on. And as embarrassing as it may sound, I’m pretty much a coward when it comes to enduring pain.

Some of you might be wondering about the title of this blog, particularly since the subject seems somewhat far removed from ranch and barnyard animals. And granted, it is. But there’s a reason which I’ll try to explain some point down the road. Suffice it to say, my mind has always been a little random so the connection between the title and the subject may not make much sense, even when I try to explain it. But it makes sense to me and since this is my blog, I can pretty much call it anything I want.

By the way, I’ve never blogged before. In fact, I haven’t really read many so I’m not sure if I’m doing it right. But seeing as how it’s my first time, I’m trying my best to make it informative, inter-active allowing people to leave comments, and most importantly, somewhat humorous. I’ve spent a great deal of my life laughing and disease or not, I see no reason to stop anytime soon. Life is just too damn funny to remain a passive observer unaffected by the irony of the whole thing. For example, while I definitely don’t believe serious illness is funny stuff, I do find it entertaining to ponder that I went about life thinking myself the timeless center of the universe.

While the truth probably is that we are all the centers of our own little universes to some extent or another, time has always owned us. However, some of us never considered time much of anything other than a tool to help us plan our lives. “Let’s meet for drinks at six” or “I have to be at work by eight”. Or, “my birthday is in two months”. Other than defining past or future moments, I rarely, if ever, pondered the meaning of time. For instance, I didn’t freak out when time turned me forty. Later on, when time turned me fifty, there were a few passing thoughts of concern that hit me, especially when I reflected back on how, as a young man, I believed fifty was old. Nonetheless, I was able to march forward through that decade blowing past my sixtieth birthday with very few concerns about my future. That’s probably because I kept hearing people tell me it was the “new” forty. God only knows how we hard we seek to embrace a positive perspective.

But with the C word came the brakes. And now I’ve entered into whole new relationship with father time.

The ultimate truth is, we all come with expiration dates. Time knows those dates. As any good Buddhist would advise, it’s now time for me to make friends with this defining universal force. Strangely enough, I suspect we’ll be getting along just fine regardless of what lay ahead. I always enjoyed getting to know new friends. Besides, I suspect it’s virtually impossible to have this disease and not think about the end of time as we know it. Surprisingly enough, the prospect of death adds a lot of color to life.

So anyways.

A couple years back I had some lower teeth removed and replaced by a partial denture. Around that time, I began to experience a slight impediment to my speech. I just assumed my tongue was restricted by my dentures causing a slur to my speech as well as the inability to clearly enunciate some words. I saw another dentist and they felt confident that dental implants would solve the problem so I began a ten-month process of putting steel posts in my mouth, waiting for a period of healing, and eventually installing some new teeth. However, after the procedure was completed, my speech hadn’t improved.

I then saw an ear, nose, and throat doctor who immediately told me the right side of my tongue was paralyzed. Apparently, I had suffered some neurological damage. I was informed the cause could be anything including Parkinson’s disease or, worse yet, Lou Gehrig’s disease otherwise known as ALS. A very real sense of terror set in because I had, earlier in my life, been a hospice volunteer and spent a year helping a woman pass of this horrible disease. I started doing a lot of praying.

A few imaging tests later, one of my doctor’s associates told me I had a tumor at the base of my tongue which had permanently destroyed a major nerve. He informed me I would never regain clarity in my speech. I was utterly shocked. But more shocks were soon to follow. By the way, shocks sort of define this disease.

I subsequently underwent two surgical biopsies. The first one left me somewhat uncomfortable but I was feeling fine within a couple of days. However, my doctor told me I’d have to undergo another one because he’d been unable to find my tumor. Apparently, it was so deep and hidden that he needed the help of another physician and ultrasound to find it. So off I went back under the knife. And this time recovery was pure hell.

My tongue looked like a piece of charcoal and it felt as if it had fused to the roof of my mouth. Eating solid food was out of the question. In fact, swallowing liquids was a real chore complete without drool cascading down my chin and swamping my shirt collar. For a good four days I was in total misery. Although I’d gone back to work the second day after my biopsy, I couldn’t last more than two hours in the office. All I wanted to do was sleep. Thank God I’d been prescribed a large bottle of liquid Vicodin. And as I told my friends, I used it sparingly trying to save it for when I was feeling better.

I am feeling much better now but my tongue is numb and its apparent I’ve lost a significant portion of my taste buds. Nonetheless, I can still register some tastes and I’ve started making my own meals basically comprised of stuff I can puree into baby food. Immediately after the surgery my speech was totally garbled. However, it has improved significantly over the past couple of weeks but is still far from where it was prior to the biopsy. And swallowing….it has now become a learned art requiring practice with a lot of fails along the way. In fact, I’ll soon be taking swallowing therapy. One lesson I learned from the internet about strengthening my throat muscles is to hold your tongue with your front teeth and swallow. I practice it countless time a day. All said and done, it truly sucks having oral cancer.

As is the case with most of our personal tragedies, I am the likely author of my current condition. I am a lifetime smoker and chances are pretty good my favorite addiction led to this tumor. While there exist other possible causes, the cause no longer really matters. My current situation is what it is.

The good news is a pet scan recently revealed the cancer is localized to the area under my tongue. The bad news is my options as of this moment are surgery or chemoradiation. Surgery will likely entail the removal of a portion (if not all) of my tongue. And while this option might totally eliminate the cancer (along with some follow up radiation), it would leave me eating through a feeding tube and mumbling about with a tongue constructed from pieces of my leg. I seriously doubt that I’ll be choosing this option.

The other treatment plan consists of an aggressive combination of radiation and chemotherapy. The program only lasts for about 35 actual days however it’s predicted to start taking a pretty good toll on my mouth around week two. Right now, I’m in the process of having a feeding tube installed because it’s a virtual certainty my mouth will feel completely destroyed along with my saliva glands. But hey, there’s some chance the tumor could be destroyed. Nonetheless, option two is going to be pure hell. I meet with a surgeon in Indianapolis next week to get his opinion and see if there are alternatives, I’ve not been made aware of yet. According to my local doctor, option 2 comes with a moderate chance for success.

So, there you have it.

The reason I’m writing this blog is because I love to think and share my thoughts. And I love to write. Plus, there’s the added bonus of having something to do occupying my time between chemo and radiation. The down side is that the thoughts I share could offend some as being too cavalier, too bizarre, or just generally, too insignificant. But then again, this is my blog and I’m going to write pretty much whatever comes to mind.

My hope is that it entertains and informs. The blogs I have scanned to date focus on the various treatment people have undergone along with comments on how they are progressing. While I’ll certainly describe the medical aspects of my day, I, in no way, will suggest treatment alternatives to others. During the course of the upcoming days, I’ll tell you what I decide to do but I’m starting to comprehend that everyone’s course of action in fighting this monster is a personal decision involving factors unique to themselves. For example, I’m 65 with one child, age thirty-six, who I love and value very much. But he has nicely advanced on a journey of his own. If I were a younger man and had three minor children to raise, I might make different treatment choices, ones that could significantly affect my quality of life but which would keep me around a little longer to be a father.

This might be a good opportunity to talk about empathy. I certainly appreciate the many prayers and thoughts my cadre of friends have expressed to me. But I’m not writing this journal to elicit sympathy. Rather, I’d like to provide a very candid picture of the journey I’ve now found myself walking paying particular attention to the emotional component. And as you can imagine, there are a lot of emotions swirling around this hurricane.

Right now, I would describe myself as guardedly optimistic about my prognosis. I try to smile and laugh a couple hours a day. I’ve always surrounded myself with positive people and those relationships are wonderful antidotes. I’ve also called upon my sense of spirituality. It’s a relationship I developed in my early 40’s as I went through some relationship challenges. While it isn’t exactly the same as religion, the overall concept is strikingly similar, especially to that of the Jesus we see in the sayings quoted by Thomas. While his Gospel was never chosen for inclusion in the New Testament by those authors who met and debated its contents nearly four-hundred years after Christ’s death, it is filled with many beautiful but sometimes curious quotes. The essence of those quotes is that God is as close to us as our hand which translates to Him being inside each of us should we decide to look. And I have been conversing with this version of God a lot lately.

My recent days are filled with things to do. First, I go to work rather early in the morning and occupy my time trying to resolve criminal cases. I’m now a deputy prosecuting attorney have spent the previous thirty-five years as a defense counsel. I suspect I’ve tried well over 200 cases in my career but my days of being a trial attorney are coming to an end. My speech is just too poor to continue. But I can communicate well enough to prepare and resolve cases so that is where I focus my energy. By the way, my employers have been absolutely wonderful.

Obviously, my days also include medical appointments. During one week in particular, I had two lengthy imaging tests, one appointment with my surgeon, one with an endocrinologist, one with food tube people, all capped off by a two-hour dental appointment. And only God knows how much I love visiting the dentist. Turns out that dental issues need to be completely in check before beginning radiation because of the potential damage saliva issues may cause.

And then there’s my dog. Thank God. I think he knows something is wrong because I’ve recently woken up to him laying back-to-back with me on the bed. He typically camps out on the downstairs sofa as evidenced by the drool stains.

And speaking of beds, I’ve managed to sleep like a baby. If I awake during the early morning hours, which is seldom, I switch my mind off and go right back to sleep. But the dreams have been quite mysterious. They tend to focus on people and situations from the past. I suspect they’ve come to aide my psyche in finishing some unconscious business I may have neglected consciously processing. But who knows?

I have spent the last few weekends getting things together. I’m approaching radiation with the thought in mind that I won’t want to be running over hell’s half acre buying groceries, dog food, or going to the dry cleaners. I’ve also been researching meal ideas for when my throat starts hurting.

So anyways, that is the current lay of my land. I’ll keep you posted.