Sunday, October 28, 2012

Think odd of me odd if you will. I love this weather… cold, rainy/misty, just enough air currents to cause gentle storms of leaves. Yellow and red cascades of leaves spinning or pouring from some large trees. It's been the kind of day most others would proclaim "nasty" and they make plans for a day indoors. To me, mid fall ought to be wet and breezy and cool. It just seems right. So rather than finding it "nasty" I find it quite beautiful and appealing. Outdoor functions shortened and less intense to be sure, but still, my day doesn’t consist entirely of nesting. (However, the alternative seems appealing as well. Building a large fire, put-over a pot of some kind of soup, or stew on the wood stove.) I have noticed that I like things in Nature to be in place, or maybe a better way to describe it is… I don't like for things to be out of place. One of the most unique emotions I have are those brought on by seeing or hearing something in nature that is "out of place". It brings forth in my mind and heart a very mild depression, which lasts only as long as the external event. Walking by the lake yesterday, in the cool, airish and damp morning, I heard robins singing up in the woods above me. It is a nature-sound that I associate with early spring… Perhaps a warm day in March. Likewise, a few days before that, a few red winged black birds were singing as they were beginning their evening roost. It was also out of place, and reminded me of deep summer rather than mid fall.
I don't believe these things are unusual, or caused by "global warming". I don't believe that the Earth is out of whack because these things are happening. I have experienced them, from time to time, my whole life. These birds, whatever species they may be, simply haven't vacated the area for the warmer climes south of us where they will winter. Still, the sounds leave me so slightly unnerved to be almost a pleasant sensation. The sounds transport my attitude; my heart to other places and times. And when I don't want to be transported (emotionally), I don't like it much. Especially when it is fall-time, my favorite. It may also be from an unattractive association. I remember once, my mother telling me that she did not care for the robin song at all. She said it reminded her of a time in her childhood when she was at a place she didn't want to be; I think visiting a family elder. Mom didn't say that the experience was traumatic - just unpleasant and she did not want to be there. I suppose she was deeply bored. Ever since that time, the robin-song reminds her of being at a place she didn’t want to be. I have memories like that - memories triggered by some external sensing. We all do. Some are good; some not. But what makes my dislike for spring and summer sounds heard in the fall of the year more interesting is this: When in spring, I absolutely love the robin-song. Yesterday, if it had actually been springtime, I wouldn't have disliked the sounds at all. I would have enjoyed the sounds. The same is true for the blackbirds I heard earlier in the week. I guess I like for things to be "normal". Nature is so very odd. The human mind cannot fathom even a small fraction of it. It is my opinion that our minds are incapable of understanding most of the Universe. And I don't mean we simply haven't discovered all of the equations and theories. I mean, in the most fundamental way, we are incapable of complete understanding, the same way my cat, Max could never understand calculus. This, of course, is one of the many things that makes life so wonderful.

Friday, October 26, 2012

I don't recall being angry through all of this. Maybe I have been, and I just don't recall it. To be sure, I've had depression, anxiety and other emotions, but I don't remember ever being angry about having cancer. I remember being angry regarding the amount of pain I was in last summer, and the fact that it wasn't going away in what I considered a normal amount of time. In fact, I remember one night, in the wee hours of the morning, being so fed up with the pain, I got out of bed, despite the extreme pain, and I walked further down the hall (about fifty feet) further than I had been able at any other time; and it was driven by pure anger. Of course I was dragging my "pole" around (my IV) and I was drugged out of my head on morphine. I barley remember it; raising my voice, waving my arms in a way - a classic, genuine hissy fit. I was talking to nobody in particular (because there was nobody there) why the pain wasn't going away and why couldn't I walk very far, and how much longer this pan going to rack my body and why doesn't somebody just put me in a coma until I heal. I was angry then; very angry. Not at the cancer, but the pain. Somehow I think I understood it was where I needed to be at this point in my life. The cancer was so unusual for a person my age and previous fitness level, I figured it to be God's Will in some way that I did not or could not understand. So it was easy to not feel anger. Now that I am getting around a lot better, and my scans prove me to be "cancer free" (which does not mean that I am in remission), I am beginning to look back at it all, and feel some anger. The data coming out of the UPMC research indicates that I have a %10 chance of living from five to ten years. So as once thought I probably had 30 to 40 more years to accomplish things in my life, has now possibly been compressed to just five or ten. I don't even know where to start. (Before you start writing comments that none of us have a guarantee for tomorrow, I know this - but the average lifespan in the US is 78. Mine is 55 to 60. It is not the same.). A much better retort would be the fact that I would probably already be dead or close to it, had I not found the HIPEC procedure. Now that truly is a blessing, and a Gift from God. In general, and almost all of the time, I feel fortunate and greatful. But not all of the time, and not for the past couple of days. I am only human. I WANT AS MUCH GARENTEE AS I CAN POSSIBLY HAVE, that I will attend my grandson's high school graduation. If I did that, I'd be positive that I would have taught him how to fish by then, and I would have exposed him to my values of wilderness, nature, and the grandeur of God's Universe. I WANT TO SEE MY SON REACH HIS DREAMS of becoming an attorney. After the challenges he has faced, for him to be where he is now, a father, working two jobs and about to finish a BA in criminal justice is just remarkable and I am so incredibly proud of the person and father my Son has become. I want to see it continue for longer than five or ten years. I see my bicycling teammates and club mates riding all kinds of interesting rides: going to races and have success. I want to rejoin them. It would take me at least three months, and probably longer given what I have been trough physically to regain that kind of strength, if it were even possible. I have a fear of even getting started. I am grateful that I am regaining so much strength, and that I have no detectable cancer in my body. Like I said above, without the HIPEC, I'd be very sick or dead already. So to complain, or be angry about having cancer now, truly is not a place a reasonable person would remain for very long. But it is how I feel right now, and I don't choose my emotions. In my readings regarding "survivorship", it is common for patients to enter an angry phase when they've reached a certain level of healing. So I'm not abnormal (so called). Every cancer patient lives with the prospect and fear of a return of the cancer, and a return to the treatments that made us all so sick. Therefore, every cancer patient tends to prioritize what they want to accomplish with their lives. Accomplishments become more urgent. Even patients who are in full remission. I don't expect all or even many of you to be able to follow the equation below, but for those of you who can, you might find it interesting. {The cancer that I have, according to not only modern research, but the current models indicate the following functionality regarding mortality: M(t) = 0.8533*e^(-0.2626t) Where M is mortality and is a function of time (months) t = time in months e = natural log e = 2.71…. I derived this model based on the UPMC data regarding mortality of patients who had the cancer that I have, and underwent my treatments exactly. This model fits the real data %97} What the above means is that I have less than a %10 chance of surviving from five to ten years. You may not like math, or mathematical ideas as they relate to anything, especially a persons life, but I do like them. And I like to use them. Ultimately, I am trying to get to a place, emotionally and in Faith, where I can live life as if I had never gotten sick. Day to day. And to carry on with the life I would be living had I never gotten sick. It is hard, but I am making some progress. I am also having setbacks, like now. When I first got sick, I was literally torn from an enjoyable, rewarding and active lifestyle. I just don't want to have to go through that again. I don't want, for example, to begin training and attain a high level of performance, then be ripped away from that again. I am striving to set these fears aside and carry on, but I first must do it honestly. Bravery is not something I want to fake, and I don't think I even could fake it. Like it or not - believe it to be cowardice or not, IT IS WHERE I AM. I am afraid to start training again. I am afraid to believe the cancer will never come back. And that can have no other meaning but that it is easier to simply remain in a "sick mode", and try nothing that leads to something I may loose. When I was sick and weak, it was obvious that I would not begin to train, or do the other physical activities that I love. Now that I am getting a great deal of my strength back, the only thing stopping me is my fear. I am not choosing to stay in a "sick mode". I am working through my emotions so that I may move forward in the healthiest, strongest, most appropriate way possible. While I am not there yet, I will get there, I have all the confidence in that. Please understand, this does require a lot of hard work, emotionally and spiritually. In the end, I think what is going on inside my heart is that I never got mad about having cancer. Most people believe anger to be a bad emotion; one not to be displayed or even felt. This is, in my opinion, wrong. We must deal with all of our emotions, even anger. I am not saying that when we get angry, it is Okay to go beat somebody up, or go on a shooting rampage. No, that is not healthy and that is not what I mean. Anger must be processed just like any other emotion; in a healthy and meaningful way. And that is what I intend to do. Furthermore, I don't intend to pretend that I am not angry and shove it down inside me. That is not healthy either. As always, as I enter this new phase of healing, I ask for your prayers. I am confident that God will heal me regarding these issues as miraculously as he healed me physically.

Wednesday, October 24, 2012

Emotional Inertia

Some days, not many and not very often, nothing anybody says or does can relive my sorrow, grief, anxiety, (on and on) regarding what has happened to me. Yesterday was a day like that. I had imagined that I would begin training again on the bicycle yesterday; I had become excited about it, and I have a plan how to gently restore myself to some level of fitness that is reasonable. However, when the time came for me to dress and get out on the bike, I encountered some fierce anxiety. Ultimately, I ended up not training, and went driving around with Peggy for some autumn photographs. That was pleasant, but I was disappointed that I didn't have the emotional strength to do what I had intended. I don't suppose it is surprising that I have some emotional resistance when I begin to perform my most cherished activities. When I look back at these past 14 months, I realize that when I was told I had late stage cancer, I wasn't feeling sick; at least not sick enough to stop doing all of my normal activities. So, it was a TOTAL SHOCK to get this information. As such, I was torn, literally ripped from an extremely active lifestyle that stretched back to the time I first learned to walk. Emotionally, it was extremely difficult, because I went from not feeling sick at all, to surgery, to another surgery, to chemotherapy, then more serious surgery and nearly dying - and none of it was actually from the cancer and all of it from the actual treatments. I am simply unsure I want to set myself up for that kind of life-reversal again. I don't want my life to be turned upside down again, like it was 14 months ago. So I am afraid to begin cycling again. In a great many ways, it is easier to simply remain "sick", and since I have already accepted my possible early demise, why mess with the status quo? I mean, if I reach for the stars again, conduct my life as if I were no longer sick, I could be slammed back down again. If I remain where I am, the crush of it won't be as bad, if the cancer returned. (by the way, there is a relatively high probability that it will return, and I will have to re-enter some kind of treatment). When I look out at my cycling team and club, I want so badly to rejoin them. I want so badly to become the cyclist that I was formerly - and re-take my place among the top (regionally). But I am afraid. Or at least I was yesterday. Maybe today, I won't be. Maybe today I can begin living the life I have. Yes, I need only do that. And I should go knowing that what ever lies in my future, God will give me the tools necessary.

Monday, October 15, 2012

I am home now, from Pittsburgh - to have my colostomy bag removed. (It was all more difficult than I had suspected it would be, but that is another time and another story). Every step of the journey from here to Pittsburgh and back was sprinkled with a pinch of "last summer", or "last time". I had already started wondering if I had some kind of posttraumatic stress disorder regarding the events of my last visit to Pittsburgh, and now I am certain of it. The smells, sights, sounds, just everything from beginning to end of the trip reminded me of last summer. Remind isn't even the best way to describe it - every sensory thing took me to mental or emotional states that were more dreamlike than just simple memories of a stressful time. If I napped or slept, I'd slip away into unconsciousness with "last summer" uncontrollably running sequences over my minds eye. But they were clearly (to me) not memories of actual events, even though they were exactly that. They were more like memories of a dream I'd just remembered a portion of - stirred, perhaps, by lying down for the first time since I'd had the dream. Laying still, waiting for sleep to consume me, I would explore the memory - the dream, actual event in my mind to see if could conjure up more of it, and I usually could. It was emotionally painful, but not excessively - my curiosity about the oddness of the memories outweighed the emotional distress it caused and as I cascade into sleep, I also cascade into the "memories". Perhaps this next is a false memory, or some other deep physiological phenomena, but I am sufficiently convinced that I had visions of "Pittsburgh" when I was about six years old; I had dreams or perhaps actual visions of a large city with a hospital upon a hill. In the memory, I was with grandparents in a single storied building with large windows, across a river. We could see the hospital on the hill though the windows a mile or so away. I have had this memory all my life, and I never knew if it was real or dreamed. I've never known where it came from. I was very young; and to have carried it my entire life is odd. And the old memory running concurrently and utterly interwoven with the modern ones, were/are inseparable from my actual memories of "last summer"; I find this so very strange. It all wells up from so deep a place within me as to be utterly indescribable. When I returned from Pittsburgh last July, I had many thoughts and ideas regarding my life, human life and life in general that I wanted to write about. At the time, it felt like an epiphany or an equally uncommon realization that was important and greatly powerful for me at the time. However, within a few days, I came to believe these particular personal revelations might have been more drug induced rather than new philosophical pathways to follow, and they faded quickly into the chaos of my recovery and were no longer attainable in my thoughts. Perhaps this last experience is different because it is the second such "meditation", or perhaps it is because I was on far less powerful drugs, but I remember my thoughts and ideas sufficiently well to recount them and write them down. They may be disturbing to some of you, so please proceed with caution. (I find myself at a place in life where it is necessary and good for me to build, re-enforce or even modify my philosophy regarding life. However, this may not be something you want or need to read). What follows is only the beginning. Having woken after the relatively minor surgery last week, I was taken to my hospital room. I instantly realized, even in my anesthesia induced stupor that, unlike last summer, I had a roommate. More than a day of attempts to contact my roommate were unsuccessful as my occasional and strategically placed "hello's" went unanswered. The roommate, who we might as well call "Paul", was an individual perhaps ten or so years older than me, and he rarely left his bed. With only a hospital curtain between us, it was impossible not to hear his interactions with his nurses and doctors. I didn't know at first, what Paul's illness was, but it was apparent, what ever it was, it was very serious. The dosages of the multiple pain medications Paul was being administered would literally kill me and anybody else I knew if given to us. While some of the medications were the same as mine, Paul's dosages were ten times and sometimes more than that of what I was taking. I rarely heard Paul's voice, but when I did, it was weak and he spoke using unfinished or incomplete sentences. Paul's interactions with his nurses and doctors were short, concise, and twisted with whatever pain racked his body. When medical staff could not understand his answer to a question, his reply was infallibly colored with his frustration that he had not been heard the first time, and was now being intolerably asked to repeat himself. I knew, what ever it was wrong with Paul, it was more advanced and more serious than my condition. My bed was at the window; Paul's on the doorway side of the room. If the bathroom I needed or any other reason to leave my own bed, I had to pass by the foot of his. Each time, I looked at Paul to see if I could connect with his eyes, but he was most often lying in a right-handed fatal position. More than 24 hours into my hospital stay, Peggy and I were leaving my room to walk the halls, as I was recovering nicely. Exiting round the dividing curtain and passing by the foot of Paul's bed, I was shocked to see him seated upright, in a sort of a cross-legged position in the center of his bed. His emaciated hands were clasped and placed in his lap, or between his crossed legs. His head deeply bowed, and eyes closed, he appeared to be either asleep (which was unlikely since he was not leaning on any part of his bed) or praying or thinking. My earlier attempts to introduce myself, which had been either unheard or unwanted by Paul led me to respect his silence. But as Peggy and I passed the foot of his bed, I felt compelled to move close enough to touch his clasped hands. I felt so much compassion for Paul. When I touched his hands, he raised his head from its deep, painful looking bow, and our eyes connected. My touch of his hands was meant as a communication to him that I wished for him an easing of his great and vast pain, and healing - I meant for him to know within only the instant and short duration of our physical contact that I intended only God's Blessings upon him. Surprisingly, as our eyes connected, he nodded to me in understanding and no words were necessary at all, and the moment passed without them. Peggy and I went on with our walk. Later, Paul was willing to talk, if only in the short, incomplete sentences he was capable of within the limits of his pain. Paul told me that he was suffering from late stage colon cancer. I am sure that Paul had heard, and continued hearing the common moments of levity and joy coming from my side of the dividing curtain. Peggy and I had both brought painting supplies, knitting and sewing projects, and we were having some fun with our smart phones. I doubt it bothered Paul. When I looked into his eyes, I saw a good soul looking back at me. In fact, to believe that Paul had a thought at all, regarding me and my condition seems self-centered considering the level of pain he was in. And I think that both Peggy and I were both careful not to flaunt whatever fun we might be having with our crafts and smart phone facebooking. Sunday arrived and so did "Tanequa", Paul's loud and lovely wife. And with Tanequa, what had once been two separate hospital rooms melted into one room filled with those who needed care giving and those who were giving it. The initial contact came in a light-hearted yet loud question from Tanequa. She wanted to know "where are Steelers stuff" was! The Steelers were having a game later that day, and Tanequa had come to the hospital to watch the game with Paul. An introductory conversation ensued which included all of the "how-too's" and "what not's" of each of our situations. Even Paul managed a few words from behind the curtain. Tanequa forgave Peggy and I for not having the good sense to ware yellow and back that day (for the Steelers), yet gladly accepted our offer to become Steelers fans for the day. Tanequa's destruction of the dividers between us allowed me to converse with Paul a little more over the next few days, when nobody else was around. Not that I was prying, but it was impossible to keep from overhearing the conversations between Paul and his medical staff. As I regained my strength relatively quickly, Paul's condition and situation worsened. It is strange, but for this, I felt oddly guilty. By way of the overheard conversations and what Tanequa and Paul himself were willing to share with us, it was apparent that Paul was most probably nearing the end of his fight with colon cancer. Over Monday and Tuesday, a virtual parade of various specialists came to consult Paul, and whether or not I wanted to, I heard nearly every word. They had some ideas for procedures that may relieve his pain, and allow him to regain enough strength to re-start his chemotherapy. But in his condition, it was all dangerous to Paul. Eventually, "end of life" and hospice representatives came to visit him as well. I had never wondered about how things would proceed for me if or when I neared death from this horrible disease, but whether I wanted it or not, I now have a direct, real life visual. Lots of people comment about how strong they think I am or have been for the past year of this fight I'm in. But I am certain now, when we become sick and as we near death, as was probably the case for Paul, The Peace of God comes to us, and fills us with acceptance and faith. I've seen it in myself, and I saw it in Paul. As they discussed the dangers of his upcoming procedures and the probable fact that he had only a brief time left on this Earth, Paul never winced or wavered or seemed to feel sorry for himself. Paul navigated those hours with dignity and grace that can only come from God, and he advanced my own strength, and confidence that, as frightening as death may seem to every human being on Earth - those living now, or who have ever lived, there truly does come upon us a calming peace. Even in the end - even in the paying of our ultimate debt, God truly does not put more on us than we can handle. While it may not be what we want, at least, at the very minimum, we are given the strength to handle even the unthinkable. And in the end, it is my firm believe, this is how we can live a meaningful and joyful life in the face of our own eventual and ultimate demise. As for me, like I said, I am home. And while I am in some pain and great discomfort, for the moment, the path before me is lightening and filling with hope. I will begin training soon on the bicycle, and I hope to rejoin my fishing and ginsenging endeavors and even return to work soon. I will do this, not knowing whether the cancer will stay away or not. I do not know where Paul is; I do not know how he is doing. It is even possible that he has gone Home to Be with God. All I know is, God is giving to me what I need as I need it. Along with the surgery I had last week, I also needed to know Paul. Still, none of this is to say, I don't have or have had many and overwhelming moments of weakness, sorrow and fear. But there is an unexplainable, unfathomable Peace available to all of us even in the face of death.