Back in mid-September when things were starting to heat up again and my doctors were making their various recommendations on what I should do next, a good friend of mine asked me if had had that "difficult" conversation with them about what my goals for all of this were.
My friend told me that studies have shown that when patients do not make known their desired outcomes to their doctors, that the doctors make up their own stories based on what they know about the patient from previous meetings, notes, etc. I don't think this means anything nefarious, they just draw their own conclusions based on what they know, or think they know.
So that morning, I tapped out the following to both:
"I don't think I have ever had the conversation with either of you about what my desired outcome here is so I wanted to try to convey that to help inform your approach to my course of treatment.
I am 44-years old, married for more than 19 years to a woman I have been with since 1985. We have two teenage sons, a junior in high school and an eighth grader. I have a great job, my employers have been extremely supportive of me through all of this and my affairs are in order. I drink in moderation - primarily wine - although I have been known to howl at the moon on occasion. I am not a smoker although I have smoked. I've even been around a few cigarettes in the past 13 months when I have been out in social situations with friends who do smoke. I don't use illegal drugs of any kind and I try to be conscious of the foods I eat. I try to exercise on occasion, but I don't do it as much as I should.
Quality of life is my most important consideration. If my time is indeed limited, I want to live it to the fullest and die on the beach in Cabo San Lucas at sunset with a shot of tequila in one hand and my wife's hand in the other.
I don't want to bleed out in a hospital bed somewhere. I don't want to take a "live at all costs" approach because I don't want to put myself or my family through any more grief than is absolutely necessary.
I want to spend my time creating memories with my family that they can cherish after I am gone. I want to take them zip-lining in the mountains of Colorado. I want to take them to Big Island in Hawaii to hike the volcanos. I want to eat great food and spend time with my family and friends.
Please don't misunderstand. I do not cherish the thought of shuffling loose the mortal coil. I don't think of my cancer as a "gift" or a "journey" or anything else like that. It just is. I want to live, but I want to live the "rest of my years" like the "best of my years."
I am willing to trade the potential of partial vision loss that may result from surgery if the alternative is dying sooner with a full field of vision.
At this point, I am not willing to be a guinea pig for the good of mankind, but if some good can come from my particular situation that fits in line with my goals, I'm your man.
So I hope I have been able to give you a better picture of what I would like to come from all of this, and given you a better understanding of who I am. Thanks for taking the time to read."
I heard from both doctors within a day thanking me...and telling me to keep the moon howling to a minimum as alcohol reduces the effectiveness of the anti-seizure medication.
A couple of days later at dinner, Lee Ann and I finally had this same conversation with Dale and Jace. It was a pretty emotional discussion, but we ended it with a group hug and kiss into which Jace felt it appropriate to insert his tongue. So we knew it was all good.