Vanity. I have never thought of myself as an excessively vain person but my disease has revealed ways in which I have been vain and ways in which vanity is taken from you.
I have never thought of myself as an exceptionally attractive person and have always considered myself to be average. I have been fortunate in that I have not had to have any chemo that would cause me to lose my hair but my body and appearance have been affected in other ways.
I have always been tall and relatively thin at 6' 3" and around 205 pounds. A few months prior to my diagnosis, I 'ballooned' to 220 pounds but the bowel obstruction knocked me back to about 190 pounds. I again returned to just over 200 pounds and hung out there for the next 9 years through repeated surgeries and was happy with my general physical appearance.
The bowel obstruction I suffered in 2011 took me down to 175 pounds prior to the first surgery when I was unable to eat and subsisted on TPN. The next surgery took my weight into the 160s and I have slowly returned to about 175 pounds again. I never was what anyone would have considered to be muscular but the loss of 30 pounds has made me displeased with my general appearance. I feel I appear gaunt and weak now although that is probably more self image than anything else.
I have had several additional things to make me feel unattractive. I received a colostomy with my second surgery in 2011 and it is something that I still struggle with at times. I know everybody poops and I just have a slightly different exit. I manage the day to day issues without any trouble anymore and critical incidents have been mostly eliminated but it is still there and is something of which I am very self conscious.
I also have a AV graft in my left forearm and it looks somewhat bizarre. I truly enjoy the technical aspects of it but tend to hide my arm when I am not wearing long sleeved shirts. I do appreciate the access it will provide for my future dialysis but the oddness of it's appearance and the weird feeling of the blood flowing through it and the 'folding' of the tube when I bend my arm make me uncomfortable.
I have always been proud of what I felt was an above average base level of fitness. I ran my first 5k in late summer of 2010 and had done no running at all that year but still got a respectable (for a first timer) time of 28 minutes. I have always been able to hop on my bike and keep up with average cyclists without much trouble but have never been exceptional. Playing two back to back games of hockey wasn't an issue and even a third was possible at times.
Needless to say, my base level of fitness has been significantly reduced. My hemoglobin has now hit a new high recently of 10.1. That is still 1/3 less than my base level 3 years ago but it is significantly improved from the low of 7.7 I hit 3 months ago. My wife and I took a short hike up Spruce Mountain today and, even though we cut it short at just 4 miles and 600 feet of vertical, I was exhausted at the end. I would love to return to an average level of fitness but that simply is not going to happen again.
Of course, do I need to say anything about hospitals? Hospital gowns and I have spent way too much time together and some of the tests I have received have felt humiliating. I have gotten quite used to life in a hospital and even the gowns have become something that I don't mind too much anymore but the general idea of them is not something I relish.
Future degradations are coming as well. Sometime I am going to get a permanent tap to drain my lungs and that will be a tube hanging out of my side. Sometime, I am probably going to need to get percutaneous nephrostomy tubes and will have those tubes hanging out my back near my waist. Other things are probably coming as well and I am sure that they are not going to be high on the list of fashion accessories.
All this said, I wouldn't change a thing. I pass 13 years post diagnosis at the end of this month and still see several years ahead of me. Each of these things that have taken some of my self image away have been followed up by more years with my wife and kids. I hate my colostomy but, without it, I would die. I hate my AV graft but it will keep me alive. I hate my weakness but love that I can still walk, play hockey, and do some physical activity. I would do them all over again for the years that they have given me. Life is too important to worry about things like vanity.
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