I was diagnosed with Chronic Lymphocytic Leukemia 7-1/2 years ago.
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For a long time the CLL didn't slow me down much or especially degrade my quality of life. But during the last 18 months it has gotten fairly bad. The swollen lymph nodes are now outrageously large. I feel like I should be working in a freak show at the circus. I almost hate to go out in public. They have gotten pretty painful too.
The blood platelets have begun declining, and the red blood cells/hemoglobin have gone way down. So I am almost constantly out of breath, and numbing fatigue comes after just a few seconds of very minor exertion.
The body's ability to fight off invaders, the immune system, has declined precipitously. There is no value in being gross by describing in depth the almost constant tooth and jaw infections, lung infections, jock itch, etc.
Now within the last 90 days I have lost all sense of smell, which of course means also almost all taste of food. My ankles and feet have swollen up so big with edema all of a sudden that I had to buy much larger shoes. Instead of taking the dog for a one mile walk in the desert, twice per day; it now is about 100 meters maximum, and just in the morning when the temperature here in the desert is still fairly cool.
My brain feels from the inside out like it is working better than ever; but I find myself driving very slowly and making large numbers of typos when I am writing. I also doze off much easier. So maybe my brain is deceiving me.
When one is diagnosed with any form of incurable cancer, you go through various stages and thought patterns. At one time having my obituary all typed up, and my will up to date seemed really important to me. Now all that seems largely irrelevant.
The main concern at this stage is: How much suffering should I put up with when this disease is incurable? Over time it will only get worse. At what point does the quality of one's life get so bad that it is sensible to accelerate the process of dying rather than continuing to fight the battle?
What I can say at this point is: My responsibilities to my wonderful little empathic doggie have now become the primary (almost sole) deterrent keeping me from taking any action to close this chapter of life's little one act play. But I'm hedging my bets too. I am ALWAYS armed now. Just in case. Always prepared, like a good Boy Scout.
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