I met John on the Internet as an active participant in a Yahoo group focused on our disease. I've met many men through these types of groups and there are those who are regular correspondents, those who have lots of questions, those who just lurk. And there are those who give answers and are the first ones there with important news of new drugs or treatments. They are the wise men of the Internet whose information and experience we value even more than the medical information we find elsewhere. Cancer is such a personal experience that we tend to relate more to what other individuals experience than what the "standard" or "normal" progression of a disease offers. Pain is a good example of this. We all experience pain, but how and where and how if affects us is very personal so it helps us to hear about how other patients experience it.
On this particular group, John A. was one of the most prolific contributors for many of the six years of his journey. He made sure we all knew what he was doing, what his research had found, and what worked and didn't work for him. Many men are indebted to him for this and so many of us called him our friend. I had several direct discussions with him and he was complimentary of the work I am doing and was, in fact, the one who suggested that I try oxygen, which has been very helpful to me. But it was his last few months that meant the most to me and several other men who are nearing the end.
John knew that he was going to die soon. His body was telling him loud and clear that his days were numbered to the extent that he felt comfortable giving a date. And while he outlived that date, he couldn't outlive what the cancer was doing to him and he died several weeks later. What he knew, though, was that all of us were wondering the same thing. When am I going to die and how is it going to happen? It is the great unanswered question for us and one which the medical profession seems loth or unable to address adequately. As morose as it may sound, we want to know the details. We want to know how our body will act and how it will signal to us that the end is near. So John took it upon himself to give us a detailed run down on exactly what was happening to him every couple of days. He listed his drugs and the changes that were made by his hospice team to address existing and new symptoms and side effects. He described in detail every strange thing that happened to him physically, mentally and emotionally. When something wasn't working, he talked about why he thought that was the case and what he wanted to do about it. And when he was not well enough to do it himself, his wife Jeanne took over and kept us up to date, finally describing his last night and last minutes with us. What a wonderful gift to us all.
I read the news of his death that evening and, while I knew it was coming, it caught me off guard and I found myself shedding tears for this man who I knew only through his words and his wisdom. I could barely make it through his wife's note as I read it aloud to Dianne. I had felt a strong connection to him. We were dying of the same disease and our symptoms were very similar. Although I felt that I had much more time left than he did, we were on the same trajectory so his death was, in a way, a milestone marker along my own path. Sometime, this will be me. It was very personal and I felt it in my gut. So did Dianne. As I read Jeanne's note to her, she could see herself in the same situation and it conjured up in her the same fears as I. We both cried, as much for ourselves as for John and his wife. It was a sad way to end our day and it has taken several more to really come to grips with it all.
But we have, as best we can, and I felt that it was important to recognize his contribution and share with you the impact he had on me. I stress always how important it is for us to talk about death in general and our own deaths in particular for so many reasons. We need to understand, we need to be prepared, we need to face death as we face life. And when we want to know how we are going to die, what a blessing it is to find someone who can talk openly about that too. Like John did. Like he did for me. In my last note to him, I promised to look him up on the other side and I will keep that promise.
I am feeling much better these days. With my pain under control, I feel like I have a new lease on life. I am still challenged with side effects from the steroids that are helping with the pain, but I am concentrating on getting down to a level where I can also manage the side effects without bringing the pain crashing down about me again. My palliative doctor visited today and was very pleased with my progress since he first met me, when he thought I could have survived only weeks! It was a "yikes" moment for me but his optimism has made me feel so much better emotionally and it is that positive attitude that will help me to enjoy life now.
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