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I would like to wish all of my friends and colleagues who have CLL a very satisfying and fulfilling New Year 2008.
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Thank heavens for the CLL support group on the internet. One lady in her 70’s who has CLL today posted a message entitled “Cancer Sucks.” I find that to be a wonderfully articulate description of the situation.
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I think that the trick is: Make The Best Of It. However much time you have left, give as much love as you can and be as generous as you can. Not just generous in the materialistic sense, but also generous with your love and praise.
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It is sometimes difficult to realize that we have cancer, but then the lymph nodes and the spleen begin swelling, the night sweats completely soak your bed, the cycles of constipation and then frequent and unpredictable diarrhea begin again.
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Some of one’s swollen lymph nodes are visible. The ones on my neck are readily apparent despite my attempt to camouflage them with a beard. Normally one wears a shirt, so the big swollen lymph nodes under the armpits generally don’t show. At night I have to position my head at just the right angle on the pillow or the neck lymph nodes are rather painful and impede sleep. But
the interesting ones are those inside the body. Sometimes they get large enough that they begin to push on useful organs, like the esophagus. So choking while eating can become a problem. And other lymph nodes inside the body can press up against organs like the lungs, bladder, and heart.
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I take my dog out on one mile (1.6 km) long hikes in the desert each morning and evening. So I am not totally out of
shape. But the uncontrollable sweating is amazing! At any temperature above about 65 degrees F (18 C) I sweat like a pig. Living in the southwestern desert of America this means most of the time. So one gets used to changing one’s socks and underpants 2 - 3 times per day. And real care needs to be taken about this part of hygiene, because allowing the skin to remain in contact with soaked clothing too much of the time can result in fungal or mould infections. Which the body’s weakened immune system has a real tough time fighting. Dental hygiene also takes on a new sense of urgency. There is lots of speculation about why CLL patients tend to get leg cramps at night.
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One of the biggest concerns is respiratory infections which can easily lead to pneumonia. This is what most CLL patients eventually die of. Uncontrollable pneumonia.
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As your blood begins to get overloaded with the cancerous dysfunctional white cells which refuse to die and go away, there are fewer and fewer red blood cells. So your lungs and heart have to work harder and harder to carry enough oxygen around to the various tissues in the body. Eventually one's platelets (which help clot the blood) begin to decrease dangerously. This is normally a sign that the disease is rather advanced.
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With the body’s immune system functioning far below par you tend to get sick easily. And you take a lot longer to heal up when injured or sick. You get to where you dread being around a group of sniffling and coughing children. After a while you begin to think of yourself in a Howard Hughes sort of way, washing your hands frequently, carrying around hand disinfectant, and wishing you could wear a face mask into Wal-Mart.
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And it affects one’s self image. I cannot imagine any woman being interested in me, except perhaps out of pity. So mostly it is just me and my dog facing the world together. Maybe in some sort of twisted way this sense of aloneness is responsible for me getting a concealed handgun license and always carrying. Always. Every time I leave the house. If I leave the house without my conealed handgun I feel almost naked. And in college I believed in Ghandi. I really thought I was a pacifist.
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There it is. We really do have cancer. You can get all sorts of tests done which attempt to predict your remaining life span. Some patients choose to do chemo, which I personally think of as injecting rat poison. One step away from the medical profession’s blood letting of the 16th century. Remember the barber-surgeon back in the 1500s? They even did it to King Henry VIII. Chemotherapy treats some of the symptoms, but in most cases it actually makes the immune system work even more poorly than it was. Sometimes much worse.
-
It is a simple fact that lots of people die from CLL every day. So don’t grumble and complain. Just make the best of the time you have left.
I would like to wish all of my friends and colleagues who have CLL a very satisfying and fulfilling New Year 2008.
-
Thank heavens for the CLL support group on the internet. One lady in her 70’s who has CLL today posted a message entitled “Cancer Sucks.” I find that to be a wonderfully articulate description of the situation.
-
I think that the trick is: Make The Best Of It. However much time you have left, give as much love as you can and be as generous as you can. Not just generous in the materialistic sense, but also generous with your love and praise.
-
It is sometimes difficult to realize that we have cancer, but then the lymph nodes and the spleen begin swelling, the night sweats completely soak your bed, the cycles of constipation and then frequent and unpredictable diarrhea begin again.-
Some of one’s swollen lymph nodes are visible. The ones on my neck are readily apparent despite my attempt to camouflage them with a beard. Normally one wears a shirt, so the big swollen lymph nodes under the armpits generally don’t show. At night I have to position my head at just the right angle on the pillow or the neck lymph nodes are rather painful and impede sleep. But
the interesting ones are those inside the body. Sometimes they get large enough that they begin to push on useful organs, like the esophagus. So choking while eating can become a problem. And other lymph nodes inside the body can press up against organs like the lungs, bladder, and heart.-
I take my dog out on one mile (1.6 km) long hikes in the desert each morning and evening. So I am not totally out of
shape. But the uncontrollable sweating is amazing! At any temperature above about 65 degrees F (18 C) I sweat like a pig. Living in the southwestern desert of America this means most of the time. So one gets used to changing one’s socks and underpants 2 - 3 times per day. And real care needs to be taken about this part of hygiene, because allowing the skin to remain in contact with soaked clothing too much of the time can result in fungal or mould infections. Which the body’s weakened immune system has a real tough time fighting. Dental hygiene also takes on a new sense of urgency. There is lots of speculation about why CLL patients tend to get leg cramps at night.-
One of the biggest concerns is respiratory infections which can easily lead to pneumonia. This is what most CLL patients eventually die of. Uncontrollable pneumonia.
-
As your blood begins to get overloaded with the cancerous dysfunctional white cells which refuse to die and go away, there are fewer and fewer red blood cells. So your lungs and heart have to work harder and harder to carry enough oxygen around to the various tissues in the body. Eventually one's platelets (which help clot the blood) begin to decrease dangerously. This is normally a sign that the disease is rather advanced.
-
With the body’s immune system functioning far below par you tend to get sick easily. And you take a lot longer to heal up when injured or sick. You get to where you dread being around a group of sniffling and coughing children. After a while you begin to think of yourself in a Howard Hughes sort of way, washing your hands frequently, carrying around hand disinfectant, and wishing you could wear a face mask into Wal-Mart.-
And it affects one’s self image. I cannot imagine any woman being interested in me, except perhaps out of pity. So mostly it is just me and my dog facing the world together. Maybe in some sort of twisted way this sense of aloneness is responsible for me getting a concealed handgun license and always carrying. Always. Every time I leave the house. If I leave the house without my conealed handgun I feel almost naked. And in college I believed in Ghandi. I really thought I was a pacifist.
-
.jpg)
There it is. We really do have cancer. You can get all sorts of tests done which attempt to predict your remaining life span. Some patients choose to do chemo, which I personally think of as injecting rat poison. One step away from the medical profession’s blood letting of the 16th century. Remember the barber-surgeon back in the 1500s? They even did it to King Henry VIII. Chemotherapy treats some of the symptoms, but in most cases it actually makes the immune system work even more poorly than it was. Sometimes much worse.-
It is a simple fact that lots of people die from CLL every day. So don’t grumble and complain. Just make the best of the time you have left.