Bad News, I have been in bed with pneumonia for 4 days. I continue to struggle for breath and with elevated temperatures. I am feeling near to death at times, I can see fear in the faces around me, but doctors say "no problem" this is curable.
The Ugly, is perhaps a dark mood since I am hovering here at the edge of extinction, gasping for breath...but I worry about that year. A year is not guaranteed, it is only a median number from a fairly small sample size, so lets say months. I would absolutely love to see the Spring and Summer, even next Christmas. What darkens my hope is seeing it through the poor quality of life I have experienced during my 2 months on this drug. I feel ill and fatigued most of the time, my symptoms are so unpredictable I can't commit to travel or events. Based on current weight loss (3 lbs per month) I would be 86 lbs next Christmas. Not desirable. Maybe symptoms will remit and stabilize, I will hope for this. If not, I will request a reduction in medication, which is correlated with reduction in PFS. Choosing better quality of life over length of life. Some may say I am "not fighting" but I don't agree. Fighting for days without quality of life, when I have had so many, doesn't make sense to me.
What I have noticed, been amazed at, is how there is a letting go when quality of life is poor. The instinct seems to stretch beyond personal will to an ancient place. Perhaps a frightening, or beautiful, place that tells you to lay down and finally rest.