I have neglected to mention that the comment part of my blog does not work. If you try to comment and can't it is not because you have done anything wrong.
There is one imunotherapy infusion and five days of radiotherapy left. Treatment ends February 3. After that it is a matter of waiting and seeing. Starting mid-February side effects should first begin to decline. Some side effects will be permanent. Some will disappear completely. Others will decline partially but not completely. These latter vary greatly from one person to another in the degree to which they disappear. It typically takes a year to know how it will turn out for any given individual. Beginning in June I will get a quarterly PET scan to see if anything has returned. One of the oncologists remarked that between my response to treatment and to side effects I was one of their "prize patients". I commented that the prize hog at the county fair gets a blue ribbon but she said they hadn't developed any such formal award for prize patients.
I once worked with someone who was a mountain climber. He pioneered a new route up Mt. Everest and was on the first team to ever climb Great Trango Tower. He commented that doing things like that was not so much a matter of summoning great resolve as it was a matter of taking the next step, and the next step,
The cards, emails, etc I have received from friends, neighbors and fellow sangha members have been encouraging and supportive. After going in for treatment a number of weeks you begin recognizing fellow pilgrims in the waiting rooms and corridors of cancer land. With little nods and greetings you acknowledge each other. In an era when there is rather too much of building walls it is soul soothing to experience people reaching out. I'm reminded of an oft quoted line by Ram Dass "We're all just walking each other home."
Sunday, January 29, 2017
Sunday, January 22, 2017
January 22, 2017
On the medical front. Six of eight imunotherapy infusions are now done as are twenty three of thirty three radiotherapy sessions. Side effects of immunotherapy, which are already manageable, actually seem to be declining somewhat. Radiotherapy side effects are predicted to continue increasing for another week and then, for the last week plus two post therapy weeks, expected to plateau before beginning a slow decline. There have been two pleasant surprises. I had been using a numbing mouthwash before eating because of tongue soreness from the radiotherapy. Although eating only soft, smooth foods I still needed to numb my tongue. For whatever reason the numbing is no longer necessary. Secondly, the throat pain that occurs with swallowing is still manageable with over the counter meds. I have not needed to use opioids.
The experience of cancer I continue to find interesting. It is rather like going on a pilgrimage in a foreign land. You encounter the health personnel who are your hosts there. You also encounter fellow pilgrims some of who will eventually return to their home countries, some of whom won't. Having read people's account of their journey in cancer land and actually experiencing it is an interesting contrast. For example, I always associated loss of energy with feeling worn out. With the cumulative effects of radiotherapy there is no feeling of being physically worn out - just an absence of energy. The distinction between appetite and hunger also becomes clearer. You feel hunger but have no appetite to eat because all food is tasteless and eating is just a task to be accomplished. Drinking is likewise.
All in all the physical discomforts arising from treatment have been easier to deal with than the psychological. Dealing with the psychological is best thought of as like being on a long march or climbing a mountain. You place one foot in front of the other. If you focus on the end that's down the road you might just want to quit.
The above might sound rather more self pitying and negative than intended. I consider myself in many ways lucky and remain in relatively good spirits. I'm merely trying to describe the subjective experience.
The experience of cancer I continue to find interesting. It is rather like going on a pilgrimage in a foreign land. You encounter the health personnel who are your hosts there. You also encounter fellow pilgrims some of who will eventually return to their home countries, some of whom won't. Having read people's account of their journey in cancer land and actually experiencing it is an interesting contrast. For example, I always associated loss of energy with feeling worn out. With the cumulative effects of radiotherapy there is no feeling of being physically worn out - just an absence of energy. The distinction between appetite and hunger also becomes clearer. You feel hunger but have no appetite to eat because all food is tasteless and eating is just a task to be accomplished. Drinking is likewise.
All in all the physical discomforts arising from treatment have been easier to deal with than the psychological. Dealing with the psychological is best thought of as like being on a long march or climbing a mountain. You place one foot in front of the other. If you focus on the end that's down the road you might just want to quit.
The above might sound rather more self pitying and negative than intended. I consider myself in many ways lucky and remain in relatively good spirits. I'm merely trying to describe the subjective experience.
Monday, January 16, 2017
January 16, 2017
On the medical front. I am about to start week five of treatment. Five of eight immunotherapy sessions are over. Nineteen of thirty three radiotherapy sessions are completed. As predicted the side effects of the radiotherapy sessions are cumulative and build as the sessions continue. The prediction is that the side effects will continue increasing and then start to decrease in about five weeks - two weeks after the treatments end. I may soon have to go to opioids for dealing with some side effects. The therapy experience is a real experience of being in the moment. Dealing with today and not getting concerned about tomorrow is crucial to not getting bogged down in wishing things were other than they are.
On the experiential side. I continue being impressed with the quality of care and concern shown by the personnel at the UW Cancer Center. It is helpful to look at my experience as an observer of the experience rather than as the subject of the experience. Being an observer of what you are experiencing helps avoid sinking into the suffering of wanting things to be different than they are. You aim for things to be better but face them as they are not as you might want them to be.
My project for the coming week is to be living less oriented around my treatments. Life goes on and you still are who you were - hopefully more than just a patient. The whole experience may be an opportunity for self exploration. I'm reminded of Rilke's lines, "Now you must go out into your heart/ As onto a vast plain."
I have been reading in various areas. It may be time for me to devote more of my cancer period reading to poetry. Ted Kooser's Winter Morning Walks, the last few books of Jim Harrison's, Rilke's Book of Hours and Eliot's Four Quartets seem like good candidates.
On the experiential side. I continue being impressed with the quality of care and concern shown by the personnel at the UW Cancer Center. It is helpful to look at my experience as an observer of the experience rather than as the subject of the experience. Being an observer of what you are experiencing helps avoid sinking into the suffering of wanting things to be different than they are. You aim for things to be better but face them as they are not as you might want them to be.
My project for the coming week is to be living less oriented around my treatments. Life goes on and you still are who you were - hopefully more than just a patient. The whole experience may be an opportunity for self exploration. I'm reminded of Rilke's lines, "Now you must go out into your heart/ As onto a vast plain."
I have been reading in various areas. It may be time for me to devote more of my cancer period reading to poetry. Ted Kooser's Winter Morning Walks, the last few books of Jim Harrison's, Rilke's Book of Hours and Eliot's Four Quartets seem like good candidates.
Sunday, January 8, 2017
January 8, 2017
Third week of treatment has now ended. A number of things struck me over the course of the week.
On the medical front. Side effects of the treatment are beginning to accumulate. The effects of the imunotherapy are well within the manageable range however unsightly they may be. They are unlikely to increase significantly beyond what they now are. The effects of radiotherapy are, as predicted, beginning to accumulate. This should continue increasing for the full seven weeks of treatment and not begin to taper off until two weeks after the end of treatment. What I find interesting is the coming and going of the effects in a seemingly haphazard fashion. You pretty much take things like tasting, salivating, swallowing, etc for granted until radiation starts disrupting them.
On the interpersonal front. Beverly has been remarkably supportive while still taking care of herself. Neighbors have also been offering help when and if needed, I'm greatly impressed with the personnel at the UW Carbone Cancer Center. Everyone I encounter at all levels is caring and considerate even though you may never have seen them before and may not see them again. I have probably never been compared to an aging Southern belle but I can't help but think like Blanch DuBois in A Streetcar Named Desire when she says, "I have always depended on the kindness of strangers."
On the emotional/psychological front. Various people confronted with a life threatening illness have commented on how it has changed their perspective on life. I am finding something related but not quite the same. Over the last twelve to fifteen years, if not longer, my mindfulness practice and my pursuit of a Buddhist path has lead me to where I am. My current health circumstance has not revealed anything significantly new to me. It has, rather, made the place where my path has lead me much more real, concrete and vivid. Much of my life has centered around acquiring information, analyzing, problem solving, etc. Looking back two kinds of things stand out and seem of significance. Connections with other people and other sentient beings, whether a close and ongoing relation or just a passing contact with somebody where there was a felt connection. The other thing is the appreciation of beauty, whether in the context of art, nature or just a passing glimpse of beauty in some everyday thing.
On the medical front. Side effects of the treatment are beginning to accumulate. The effects of the imunotherapy are well within the manageable range however unsightly they may be. They are unlikely to increase significantly beyond what they now are. The effects of radiotherapy are, as predicted, beginning to accumulate. This should continue increasing for the full seven weeks of treatment and not begin to taper off until two weeks after the end of treatment. What I find interesting is the coming and going of the effects in a seemingly haphazard fashion. You pretty much take things like tasting, salivating, swallowing, etc for granted until radiation starts disrupting them.
On the interpersonal front. Beverly has been remarkably supportive while still taking care of herself. Neighbors have also been offering help when and if needed, I'm greatly impressed with the personnel at the UW Carbone Cancer Center. Everyone I encounter at all levels is caring and considerate even though you may never have seen them before and may not see them again. I have probably never been compared to an aging Southern belle but I can't help but think like Blanch DuBois in A Streetcar Named Desire when she says, "I have always depended on the kindness of strangers."
On the emotional/psychological front. Various people confronted with a life threatening illness have commented on how it has changed their perspective on life. I am finding something related but not quite the same. Over the last twelve to fifteen years, if not longer, my mindfulness practice and my pursuit of a Buddhist path has lead me to where I am. My current health circumstance has not revealed anything significantly new to me. It has, rather, made the place where my path has lead me much more real, concrete and vivid. Much of my life has centered around acquiring information, analyzing, problem solving, etc. Looking back two kinds of things stand out and seem of significance. Connections with other people and other sentient beings, whether a close and ongoing relation or just a passing contact with somebody where there was a felt connection. The other thing is the appreciation of beauty, whether in the context of art, nature or just a passing glimpse of beauty in some everyday thing.
Sunday, January 1, 2017
January 1, 2017
Due to various distractions it has taken a while but here is my first real blog post. The second week of actual treatment has now ended. Wednesdays are the long day when I have both radiotherapy and immunotherapy. I never gave cancer treatment much thought but it is full of interesting twists and turns. There are various things one should or should not do to gain the best outcome. There are a variety of things to be done or not done to mitigate side effects. Putting these all together and coordinating them is almost like coming out of retirement and going back to work.
The actual treatment regimen is at least on a pretty regular schedule. The preliminaries to treatment such as PET scan, CAT scan, MRI, gastrotomy tube installation, biopsies, consultations, etc were rather more disruptive and wearing. I have to say I'm finding the whole experience rather interesting. My view of reality has always revolved around seeing interacting systems. Experiencing a very concrete instance of the various systems that constitute "me" interact with each other and with the systems that are "not me" is illuminating.
Thus far significant side effects are mostly confined to my Cetuximab rash and gradually increasing radiation induced throat pain with subsequent swallowing difficulties. The rash and its' acne like appearance is about as bad as it will get. The discomfort of it is well handled with appropriate lotions The acne like appearance has given me a second adolescence in addition to my second childhood. The throat and swallowing difficulties are predicted to increase cumulatively as the seven weeks of radiation continue and for two weeks after that. So far the throat, dry mouth, etc radiation difficulties are manageable so I'm not complaining. I expect to adjust and accommodate as things progress.
Next post I'll try to focus more on my state of mind and less on clinical details. I don't expect to post more than about once a week, most likely on the weekend.
The actual treatment regimen is at least on a pretty regular schedule. The preliminaries to treatment such as PET scan, CAT scan, MRI, gastrotomy tube installation, biopsies, consultations, etc were rather more disruptive and wearing. I have to say I'm finding the whole experience rather interesting. My view of reality has always revolved around seeing interacting systems. Experiencing a very concrete instance of the various systems that constitute "me" interact with each other and with the systems that are "not me" is illuminating.
Thus far significant side effects are mostly confined to my Cetuximab rash and gradually increasing radiation induced throat pain with subsequent swallowing difficulties. The rash and its' acne like appearance is about as bad as it will get. The discomfort of it is well handled with appropriate lotions The acne like appearance has given me a second adolescence in addition to my second childhood. The throat and swallowing difficulties are predicted to increase cumulatively as the seven weeks of radiation continue and for two weeks after that. So far the throat, dry mouth, etc radiation difficulties are manageable so I'm not complaining. I expect to adjust and accommodate as things progress.
Next post I'll try to focus more on my state of mind and less on clinical details. I don't expect to post more than about once a week, most likely on the weekend.
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