Day 231
This is kind of an interim report and a bit more graphic in terms of some bodily functions, so if you don’t care to read such things, I’d suggest just skipping at least the third paragraph.
At the clinic, they always tell me to call if anything changes. Well, in the last week, three things have noticeably changed as follows:
My GI tract has been acting up a bit
I have a lower energy level
I felt like I had some emotional things going unlike anything I can remember
So I called them yesterday (Thursday) and they asked me to come in today. (Here comes the graphic part). It seems they are most concerned about my GI problems and have asked me to measure my stool output for the weekend because part of my report was that my bowel movements had become looser and more frequent in the last few days. Apparently, it can be considered diarrhea when the bowels are moved several times a day, regardless of the consistency. Measuring my output sure sounds like a lot of fun L.
Every time I go in to the clinic, I fill out a check box type questionnaire about whether I’ve had fevers or pains or itchy skin, etc., and one of the items at the bottom asks about emotional changes. I routinely just skip by that without thinking about it much, but remembered it after having a few days of emotional turmoil that included a day or two of significant sadness of unknown origin, and then reacting to something my wife said with a level of anger that was out of all proportion to what she said. I also remembered reading somewhere that emotional swings like that are not uncommon for transplant patients. When I talked about this with my caretakers at the clinic, the first thing they asked me was whether I was taking any steroids, which I am not. Apparently, steroids are known to often cause emotional roller coaster rides, but the other meds I am on do not generally do so. I have to admit to some ambivalent feelings about the meds not being implicated in my mood swings. On the one hand, I am glad my meds are not affecting me that way, but on the other hand, I sort of lost my excuse for blowing up at my wife.
After thinking about it for quite a while, factoring in that those emotional extremes are not something I remember ever feeling before, I’m starting to think of other things that are going on that are likely to play into such a state. To begin with, there is the difficulty of going through an extreme medical procedure like I have, including the chemotherapy, the transplant, and the recovery which is now in its eighth month and whose end is still some undetermined distance in the future. Along with that is realizing and dealing with the reality that the disease or the attempts to treat the disease could result in my death. But in the last few days, I have realized that there are also pictures I have of myself that have needed modification. I believe that we all have pictures about ourselves and the way we think life is supposed to be, and I also believe that those pictures while probably necessary, are usually, if not always, impediments to our spiritual growth because they can keep us in denial about the way things really are. Having to give up those pictures necessarily involves some level of pain because they are crutches that seem to help us deal with life. But they also occasionally need to be discarded or at least modified so that we can break patterns that no longer serve us. For example, I have long had a picture of myself as a healthy person. Now, for nearly a year, and actually for years before my diagnosis, I have been the sick guy. Sick enough that my health is the first thing people almost always ask me about. Or the first thing many people ask my wife about. I really do appreciate the concern and the love behind it, but it is also a constant reminder that I am now the sick guy. I am ready to not be the sick guy anymore. I’m ready to be the guy who recovered from leukemia and a bone marrow transplant. Sure, I’ll probably get tired of that as well, but for now, it appeals because it would be a move in a positive direction as well allowing a different perception of me.
Being the healthy guy or the sick guy must certainly be related to another picture of myself that I have struggled with consciously and subconsciously for a long time. That picture is the one that has me being a rock – the steady, reliable, unflappable guy. It’s a picture that I both like and find to be a burden. I like being seen as steady and reliable, but I also am painfully aware of what that sage, Paul Simon says about how a rock feels no pain and can be an island that never cries. That part fits not so well.
Well, I am rambling and probably boring you. Too bad; you could have stopped at any time ;-). I don’t need anybody to read this and it feels like it was kind of therapeutic to write about. It makes sense to me that everything together could easily add up to an emotional roller coaster, and that blowing up could even be cathartic. And yes, I recognize that I also seem to need reasons or excuses for my emotional extremes. Let’s call them explanations – that’s reasonable.
So much for a brief interim update. Overall, I’m still doing and feeling pretty well, and I still feel quite positive about getting cured and being a healthy guy again. If you’re reading this, I assume it’s because you care and your love and caring means the world to me.
Love,
Justin
At the clinic, they always tell me to call if anything changes. Well, in the last week, three things have noticeably changed as follows:
My GI tract has been acting up a bit
I have a lower energy level
I felt like I had some emotional things going unlike anything I can remember
So I called them yesterday (Thursday) and they asked me to come in today. (Here comes the graphic part). It seems they are most concerned about my GI problems and have asked me to measure my stool output for the weekend because part of my report was that my bowel movements had become looser and more frequent in the last few days. Apparently, it can be considered diarrhea when the bowels are moved several times a day, regardless of the consistency. Measuring my output sure sounds like a lot of fun L.
Every time I go in to the clinic, I fill out a check box type questionnaire about whether I’ve had fevers or pains or itchy skin, etc., and one of the items at the bottom asks about emotional changes. I routinely just skip by that without thinking about it much, but remembered it after having a few days of emotional turmoil that included a day or two of significant sadness of unknown origin, and then reacting to something my wife said with a level of anger that was out of all proportion to what she said. I also remembered reading somewhere that emotional swings like that are not uncommon for transplant patients. When I talked about this with my caretakers at the clinic, the first thing they asked me was whether I was taking any steroids, which I am not. Apparently, steroids are known to often cause emotional roller coaster rides, but the other meds I am on do not generally do so. I have to admit to some ambivalent feelings about the meds not being implicated in my mood swings. On the one hand, I am glad my meds are not affecting me that way, but on the other hand, I sort of lost my excuse for blowing up at my wife.
After thinking about it for quite a while, factoring in that those emotional extremes are not something I remember ever feeling before, I’m starting to think of other things that are going on that are likely to play into such a state. To begin with, there is the difficulty of going through an extreme medical procedure like I have, including the chemotherapy, the transplant, and the recovery which is now in its eighth month and whose end is still some undetermined distance in the future. Along with that is realizing and dealing with the reality that the disease or the attempts to treat the disease could result in my death. But in the last few days, I have realized that there are also pictures I have of myself that have needed modification. I believe that we all have pictures about ourselves and the way we think life is supposed to be, and I also believe that those pictures while probably necessary, are usually, if not always, impediments to our spiritual growth because they can keep us in denial about the way things really are. Having to give up those pictures necessarily involves some level of pain because they are crutches that seem to help us deal with life. But they also occasionally need to be discarded or at least modified so that we can break patterns that no longer serve us. For example, I have long had a picture of myself as a healthy person. Now, for nearly a year, and actually for years before my diagnosis, I have been the sick guy. Sick enough that my health is the first thing people almost always ask me about. Or the first thing many people ask my wife about. I really do appreciate the concern and the love behind it, but it is also a constant reminder that I am now the sick guy. I am ready to not be the sick guy anymore. I’m ready to be the guy who recovered from leukemia and a bone marrow transplant. Sure, I’ll probably get tired of that as well, but for now, it appeals because it would be a move in a positive direction as well allowing a different perception of me.
Being the healthy guy or the sick guy must certainly be related to another picture of myself that I have struggled with consciously and subconsciously for a long time. That picture is the one that has me being a rock – the steady, reliable, unflappable guy. It’s a picture that I both like and find to be a burden. I like being seen as steady and reliable, but I also am painfully aware of what that sage, Paul Simon says about how a rock feels no pain and can be an island that never cries. That part fits not so well.
Well, I am rambling and probably boring you. Too bad; you could have stopped at any time ;-). I don’t need anybody to read this and it feels like it was kind of therapeutic to write about. It makes sense to me that everything together could easily add up to an emotional roller coaster, and that blowing up could even be cathartic. And yes, I recognize that I also seem to need reasons or excuses for my emotional extremes. Let’s call them explanations – that’s reasonable.
So much for a brief interim update. Overall, I’m still doing and feeling pretty well, and I still feel quite positive about getting cured and being a healthy guy again. If you’re reading this, I assume it’s because you care and your love and caring means the world to me.
Love,
Justin
1 Comments:
Dear Justin,
Without contradicting anything you said about the need for adjustments in your self-image, I maintain that you're still a very healthy guy. Granted you're sick, but man, you are majorly sick, and how much has that slowed you down? You may get a bug every now and then but far less frequently than most healthy people do. You weren't utterly wiped out by your chemo. You adapted to the transplant very quickly. And although you're experiencing symptoms of GvHD, I gather you haven't even made it to level 2 yet. I realize it's easy for me to say you're not suffering, since I'm not actually experiencing it, but from the outside it seems as though you're doing better than any of us had the right to expect - except on the example of your previous good health, which led some of us to suspect you'd do well. For a sick guy, you seem very, very healthy.
Still, I'm aware of how limiting your restrictions could feel, how hard it might be to live without some kind of time table for recovery, and how much more intense your awareness of your own mortality must be than for most of us. I'd never wish the emotional struggles on you, but since they've come, I wouldn't wish away the good they can bring. You have my empathy, admiration, and love.
Lisa
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