My name is Jonathon Thompson Beyond the dots in the title of this blog should lie the words "... and as long as I am noticing the Wren sing, I will not have cause to notice the cancer I fight every day.
This is my life as a cancer patient.
This is the anniversary week for the discovery of the cancer in my body. On august 26, 2011 I had a colonoscopy that found the large mass at the very end of my large colon. I remember being miffed about having to do that and miss an afternoon fishing on my beloved creek. I had no idea that anything was seriously wrong with me, so when they woke me up, (the doctors pretty much knew on sight/site what I was in for) I remember feeling, though I never spoke the words, “oh no”. I kept feeling like I needed to push “stop”, then rewind the tape, and start over… it felt as if that should have been an option. In those first few minutes as a cancer patient, the anxiety that sank down through my body from my mind was unspeakable, and it was a perfect blend of pure horror, a desire to do the tests again – just to make sure there wasn’t a mistake – and that I wanted to erase what I had just learned and rewrite a new script. I was in an all-out, all encompassing, grand mal panic episode, and I had no idea how I would ever escape it. So severe was the anxiety, my hands and feet felt hot, even to the touch, and I felt like running – sprinting as far and as fast as I could. The anxiety was as frightening as anything else, and I just wanted it to stop; but in order to get the panic to stop, I had to remove or eliminate its source. How was I to do that?
But to the Glory of God, the panic and debilitating anxiety subsided fairly quickly on its own, just like normal anxiety, the kind that arrives without cause or purpose.
A few days later, after surgery and diagnostics, they gave me the news, stage 4 colon cancer, and I didn’t even know what that meant. The shock and horror of those early days escape me, and lay beyond my ability to convey in words. I thought, my life as I knew it, was over. I was standing on the edge of the most vast, wholesome, necessary learning period of my life and I suppose, in a great many way, I am thankful for it.
I had no idea where the cancer would take me, or how sick I would get (from the cancer or the treatments). I never imagined how difficult it would be. I mean, I really had no idea. The worst part of it all came in the first few months. Doctor after doctor after doctor told me that there was no cure, and that I had probably 2 or 3 years to live. A brand new procedure, HIPEC vastly improved that prognosis, but it tore my body down severely and permanently. Not only that, but the cancer returned (in my lungs) just nine months after the completion of HIPEC, far quicker than the average in the data.
The second year has been somewhat more settled. In this year came general acceptance. I never felt like I only had 2 or 3 years to live. I always thought I’d far outlive that idea, HIPEC or not. I have been able to let go of the things I once loved to do so much, and I have found new, less physically demanding things to do. At this point, it appears as though chemotherapy is going to be a regular part of my life from now on. As times goes on, those treatments make me sicker than they did earlier, and I am worried that the time will come, I will not be able to sustain those treatments.
I have about as many good days as I do bad ones, and I’ve been able to maintain some level of physical fitness (not through cycling – I can no longer sit on that narrow seat due to scars and surgical injuries) through working on my new cabin. I don’t have the stamina that I once had – not even close, but with some wise application of the strength I do have, I can accomplish a great deal I have learned.
Most importantly, the worst symptom of cancer by far, the fear and anxiety have waned to almost non-existent levels compared to the first year, which isn’t to say I am no longer afraid. Some days I am consumed with fear and dread. But it is not constant, as one would think. I have bright and happy times, which I never would have thought.
I suppose the most profound change I have seen in myself, is a general inability to spend any appreciable time with friends or acquaintances. Because of the dramatic treatments aimed at my colon, I am no longer able to function in any reasonable fashion. Many accidents occur, and that is pretty horrible. So I don’t tend to visit or have many visitors. Another reason for the solitude is the fact that even though I have good days, I do have bouts of sickness every day. I never know when these will hit, and the worst thing about these attacks is when I am with others, and I have to cut short the visit, or if I crash and actually need assistance from those I am with. The sickness and the bathroom problems cause needs that just make it vastly easier to stay at home, or near home or alone. You’d think that most people would understand this, but some have and do get their feelings hurt when I don’t accept an invitation to do things.
I have made it two years, as I always knew I would. As for the future, I simply have no idea. Some days it feels like the end is near, and that I won’t make it another year. Other times, I feel like I will make it a great distance into the future, even to a normal longevity (70 or more years in age). When I am in a mood where I believe in the longer time scales, I function daily much better.
I could not function at all without a strong belief in God. The number and ways that many of my prayers have been answered would buoy even the strictest atheist into believing. Praise be to God. Always.
August 6, 2003
Wayfaring Stranger. I believe at times, I'm a perpetual wayfaring stranger. a stranger even in my homelands. It's odd, when I look at my family history, legends - At least the family I most identify with, the Indians over the Upper Cumberland watershed. there are times, the deepest since of belonging I've ever known, is upon a gaze of the Big South Fork River - At times I've gained such a powerful since of belonging, in an instant, upon a visit, deep, not focused by myself, tears form in my eyes. And for me, beings like me, the deepest, happiest, strangest tear one can shed, is the one of happiness - happiness in belonging - belonging either to a child, belonging to a lover, or, as in the case of which I now speak, belonging to a land, or a river. There are times when I look down on this River, I am compelled to the greatest since of ease. And it's not something I look for, deep inside. It is not something I assist, or bring upon myself - it is a natural swelling of the land, up to consume me - and I am powerless. And as is the case a great much of the time, such a powerful belonging to one place, one land, one river, often leaves a person feeling like a wayfaring stranger when not in those places.
These eight and a half months - this year, 2003 has been a strange time for me. It has been a time of great self discovery. It has been a time of change. I don't pretend that the times or this phase is over - on the contrary, uncertainty is the only thing that I am certain of these days. I know that I have not kept up with this journal as I have in the past. It is something that wasn't a part of what needed to be done. but I have often thought about it, even had anxiety over it. wondering if I'd ever get back to it. Now that I sit here, and I write for you, I still do not know if it is something that I will maintain regularly - I am still writing the novel that I dream of. Regardless of what remains to be done, or what I will do, I am here, back at Richards Bend for a while at least - and, for the moment, I am compelled to write for you. I am rusty - the gears and processes between my ears are rusty - what I create here, I am not as happy with as I once was. And I think this is for many reasons. The most obvious reason is because I've not done it regularly in so long. Another reason is that maybe I've lost the belief that it is a worthy use of my time. Maybe I no longer believe my words or worth the time spent reading them. Or maybe, as I am led to believe at times, my life here in these woods, in this isolated cabin is more of a liability than an asset, at least in terms of how I am viewed by others. There have been folks think and say some pretty harsh things about my personality when they learn of where I live. What's interesting, there are those too, who say just the opposite - that a life like this one here, would be a marvelous thing. And it seems, nobody is indifferent. I guess I have come to ask myself the ask question that a great many other people are asking for me. and that is, why? Why am I here? I spent a year building the place, the project itself, decent and worthy in anybody's opinion. and then it came time to move in; the spooky nights, the remoteness, some loneliness, the cold, snowy nights and getting iced in for days at a time - no one else here but me - and with the loss of the ability to write, I really did begin to question why I am doing this. Writing a journal, an online journal from such a wholesome, isolated setting was something I wanted to do and it seemed to me, in "The Habitation", I failed. It felt as if it were to much. It felt as if the life were too perfect or something. It felt as if, no matter how hard I tried, I would never be able to communicate in this format, what it was like to live here. It is also hard to update my pages from the cabin. And so I slowly began to withdraw.
And so I'm back now - I've made peace with this journal. I've made peace with a great many things this year. a great many other things, I'm still fighting. But I've come to believe, I don't have to keep this journal in order to believe in living here. At one time, it felt as if living here and keeping the journal were synonymous - that I couldn't do either one without the other. Now, at least I believe, I am at peace with it. I do love being here. I love the isolation, but I do go in to town for visits with friends. I love the remoteness; the solitude. I love being independent - keeping the place warm with wood. I love the wilderness, and for what it's worth, I love keeping this journal.