Treatment or Disease?
I had sort of a bad night last night. I felt okay and didn’t have any pain. I just couldn’t sleep. It has become apparent that the Hydrocodone that I needed for pain management has become physically and/or psychologically important for a decent night’s sleep. That, in and of itself, is not a big problem. The tough part is that part of my enzyme therapy is a fairly intense detoxification. So if the meds are not for pain, I need to get off of them. I decided that last night should be the night to start. I lay awake until about 3 am, unable to sleep. If it was just insomnia, that would stink enough. Instead, I get a very intensely uncomfortable and restless feeling in my arms and legs that make it impossible to lay still. I start to fidget and end up fairly miserable. That is where the fun really starts. As I get increasingly more irritated that I can’t sleep, all the other injustices start to flare up. This program that I am on is very structured. Pills, juices, saunas, and other less delicate parts of the protocol take place between every half hour to hour throughout the course of the day. While just drinking a vegetable juice or swallowing a handful of pills doesn’t sound obnoxious and exhausting, take my word for it, it becomes that way. When your day becomes a steady stream of “have to’s” and very few “want to’s”, it becomes easy to dread the arrival of a new cycle of treatment. It makes you look forward to a night of uninterrupted sleep. When you can’t have that, ironically because of another pill, it can make you a bit agitated. I am being descriptive about this not because I want to upset those close to me or to garner sympathy. My wife dedicates her day and her life to the preservation of mine. She works tirelessly day after day to make sure that I have the pills, the juice, or anything else I need. The only time she complains is if I am trying to do more than I should instead of saving my energy for healing. So, I wondered what I was trying to say. I almost wadded this up and threw it away as I got to this point. Then I remembered why I decided to start this blog. To share my experience in the hopes that others would be able to relate and find hope. I know that I am not unique. Others have cancer. Others have afflictions, sickness, and trials. Others lose hope and are not sure where to find it again. Others have treatments that are far more invasive and harsh than what I go through daily. Sometimes, in down moments, the treatment seems like a bigger pain than the disease. That is where the support is really needed. Not only to support you through the disease, but to distract you through the treatment. Sometimes you wonder’ “Will all this effort pay off?” and “Am I using the last time I have left on a ridiculous wild goose chase?” I won’t know the answer to that until it works or it doesn’t. If your child was on a bike and about to be hit by a bus, would you only leap to save him or her if you knew the outcome? Of course not. Life or death decisions call for a leap of faith and to believe that it will work out. One way or another. What I have found is that each person can’t be all things to you. My wife, Florence Ratchet (part Nightingale and part Nurse Ratchet from “One Flew over the Cuckoos’ Nest), not her real name, is dedicated to taking care of me. Sometimes she has to nudge me in the direction I need to go. My Dad, my kids, and my brothers are there to distract me and make me laugh. My Mom, Mom-In-Law, and my sister support me and my wife in whatever way needed. They are not all things individually, but together they are everything. It boils down to why you want to overcome the situation. With mine, it is because I will always do all I can to show my children that life is worth living. It isn’t easy sometimes, but the good times far outnumber the bad. The hard times fade after you move through them. If this wasn’t true, mothers would never have more than one baby. When I get stuck in a dark place and wonder if the treatment is worth the cure, I look at the effort of my wife and kids, the love and support of family and friends and realize that sometimes they know better than I do. I just need to put one foot in front of the other each day and know that I will look back at this someday and have one hell of a story to tell.
PS – I feel a lot better this morning. :)
skip to main |
skip to sidebar
This blog is made up of thoughts for my children as I battle cancer. It is not meant to be all knowing or holier than thou. It is simply a place for those that have asked, to read about the lessons that I would like to share with my children, whether I am able to stay with them, or not.
Thanks.
Thanks.
Introduction
As I contemplate what I have left in this life, my thoughts often turn to “What have I done with this gift so far?” The answer to that question is exactly as deep and complex as the question. I can choose to look at it from a very high level and say that I have made mistakes, but overall, feel pretty good about my efforts. That is fine for maintenance purposes, but as I begin this Introduction from a hospital bed afflicted with Stage IV Prostate Cancer at 40 years old, it is not sufficient. The prognosis for my disease lies somewhere between 6 months and 2 years.
The odd thing about life is its ever changing definitions and standards. When I was younger, I would characterize life as freedom to make my own decisions and choices, beholden to no one. When I married, my life felt like it was intangible, yet to be defined, like a ghost. It was something that I was working towards, a goal. My wife and I were building a life together. It was like watching our first home being built. I saw the foundation, then the structure come into focus. Eventually, we began to see the frame taking shape to resemble our dreams and expectations. After we had children, my life completely became our life. Our life developed into defined roles. Some, my wife assumed, while others became mine. Instead of a mist that was formed by the particles of a concept, life became tangible and required research, planning, and action. I didn’t think of me anymore. Me became us. Not all the time. I’m not so full of myself to disregard times of selfishness, but my family of four, was ONE. I felt that one of my main roles and responsibilities was to provide for my family. To provide is a concept that isn’t only financial, but also to make sure that essential necessities of life were available to my family. Sometimes it was paid for, sometimes it was a shoulder, and sometimes, it was just time.
Not too long ago, our life changed. At 39, what was thought to be Prostatitis was diagnosed as Advanced and Metastatic Prostate Cancer. The cancer had left the prostate and spread to the lymph nodes, bladder, hips, pelvis, ribs, sternum, shoulder blades, and spine. My vision of life turned into a fight to live. My children, ages 9 and 11 became the focus of that fight.
As I pondered that high level question of whether I have done enough with my life, it inevitably became a much deeper question with much deeper answers. The more I thought about the question, the more I realized that the answer was much more involved than, “basically, I did fine.” The fact that I have 2 young children that I may not see progress into adulthood told me all that I needed to know. No matter what I had ever done, unless I left a road map for them, it could never be enough.
So what did I want for them? Easy enough. Everything. The best. All they could dream and all that they desired. As I prepared to make sure that they had all of these things, I realized that wanting these things at a high level, but not defining or measuring what that meant or telling them how to achieve it was the equivalent of calling them to my death bed, shaking their hands, and telling them, “Good Luck!” If that is all I give them, I have not done nearly enough.
These writings then, are exactly that. I don’t know how long I will have before I am called from this place, but I want my wife and children to know what I mean when I say, “I want the best for you.” I want them to feel my spirit with them, even if my body cannot. Mostly, I want my immeasurable love for them to be felt eternally as they progress through this life. I love them with every particle of my being and it overwhelms me. I want them to always know that without question. I want to define what “The Best” means to me and the values that make the type of person who lives that kind of life. This is for them, in the hopes that it will give them a map to use, whether I am there to guide them in this life, or the next.
The odd thing about life is its ever changing definitions and standards. When I was younger, I would characterize life as freedom to make my own decisions and choices, beholden to no one. When I married, my life felt like it was intangible, yet to be defined, like a ghost. It was something that I was working towards, a goal. My wife and I were building a life together. It was like watching our first home being built. I saw the foundation, then the structure come into focus. Eventually, we began to see the frame taking shape to resemble our dreams and expectations. After we had children, my life completely became our life. Our life developed into defined roles. Some, my wife assumed, while others became mine. Instead of a mist that was formed by the particles of a concept, life became tangible and required research, planning, and action. I didn’t think of me anymore. Me became us. Not all the time. I’m not so full of myself to disregard times of selfishness, but my family of four, was ONE. I felt that one of my main roles and responsibilities was to provide for my family. To provide is a concept that isn’t only financial, but also to make sure that essential necessities of life were available to my family. Sometimes it was paid for, sometimes it was a shoulder, and sometimes, it was just time.
Not too long ago, our life changed. At 39, what was thought to be Prostatitis was diagnosed as Advanced and Metastatic Prostate Cancer. The cancer had left the prostate and spread to the lymph nodes, bladder, hips, pelvis, ribs, sternum, shoulder blades, and spine. My vision of life turned into a fight to live. My children, ages 9 and 11 became the focus of that fight.
As I pondered that high level question of whether I have done enough with my life, it inevitably became a much deeper question with much deeper answers. The more I thought about the question, the more I realized that the answer was much more involved than, “basically, I did fine.” The fact that I have 2 young children that I may not see progress into adulthood told me all that I needed to know. No matter what I had ever done, unless I left a road map for them, it could never be enough.
So what did I want for them? Easy enough. Everything. The best. All they could dream and all that they desired. As I prepared to make sure that they had all of these things, I realized that wanting these things at a high level, but not defining or measuring what that meant or telling them how to achieve it was the equivalent of calling them to my death bed, shaking their hands, and telling them, “Good Luck!” If that is all I give them, I have not done nearly enough.
These writings then, are exactly that. I don’t know how long I will have before I am called from this place, but I want my wife and children to know what I mean when I say, “I want the best for you.” I want them to feel my spirit with them, even if my body cannot. Mostly, I want my immeasurable love for them to be felt eternally as they progress through this life. I love them with every particle of my being and it overwhelms me. I want them to always know that without question. I want to define what “The Best” means to me and the values that make the type of person who lives that kind of life. This is for them, in the hopes that it will give them a map to use, whether I am there to guide them in this life, or the next.
Visitor Map