Monday, March 12, 2012
Bald
A few times over the past 3 years I have whined at not getting to see myself bald. Yesterday in the shower it all fell out. So I changed my blog photo. ;-)
Friday, March 9, 2012
Not stable anymore
23 days ago I went in for what I thought would be a new cycle & infusion on the T-Gen trial.. No, no, no infusion. A tumor in the right side of right lung had grown too much and was pushing through into the rib; Even more significant, the cancer has spread into my brain and one tumor threatened the sight in my right eye. No more Mr Nice Guy growing slow and held mostly in check with experimental treatment.
I have been unable to write nor even read; partly due to my brain problem and partly due to lessened ability to focus. 4th grade spell champion seems gone. Through the entire 3 year journey I have puzzled over what things exactly I fear about progressing terminal cancer. Now I can specify 3 things:
1. losing my sight;
2. losing my thinking
3. dying which instinct puts me in a primal fight or flight desire to live at all costs.
Today I am left with the possibility of a miracle. This could come in the form of medical advancement. There is one more drug combo the appears worth trying, based on the complete gene sequencing that TGen did on my normal lung tissue and tumor lung tissue last September, cutting edge medicine! I finished 10 days of radiation targeted at 7 parts of my body; brain tumor shrinkage seems to have worked, so now I can start a new med, and a 2nd chemo a two weeks later.
I have been on a time release form of pain medicine. Makes me tired and slow - combined with radiation, I have been very tired with sketchy thinking. Another short acting pain medicine is okayed to use as needed for in between, when necessecary. I had hiccups for 10 days straight - nbd except it woke Jacki and me each night.
The hardest parts include the impact on Jacki and Kate, which I can only scratch at understanding. I am also aware of waking in the night and 1st thing each morning, "can I/ do I want to keep going - do I have it in me, and do I see its important to keep going. "Does God want me yet?" The vomiting, pain, constipation etc color my thinking, but so far my answer is an emphatic "Yes!" I am not done.
I have been unable to write nor even read; partly due to my brain problem and partly due to lessened ability to focus. 4th grade spell champion seems gone. Through the entire 3 year journey I have puzzled over what things exactly I fear about progressing terminal cancer. Now I can specify 3 things:
1. losing my sight;
2. losing my thinking
3. dying which instinct puts me in a primal fight or flight desire to live at all costs.
Today I am left with the possibility of a miracle. This could come in the form of medical advancement. There is one more drug combo the appears worth trying, based on the complete gene sequencing that TGen did on my normal lung tissue and tumor lung tissue last September, cutting edge medicine! I finished 10 days of radiation targeted at 7 parts of my body; brain tumor shrinkage seems to have worked, so now I can start a new med, and a 2nd chemo a two weeks later.
I have been on a time release form of pain medicine. Makes me tired and slow - combined with radiation, I have been very tired with sketchy thinking. Another short acting pain medicine is okayed to use as needed for in between, when necessecary. I had hiccups for 10 days straight - nbd except it woke Jacki and me each night.
The hardest parts include the impact on Jacki and Kate, which I can only scratch at understanding. I am also aware of waking in the night and 1st thing each morning, "can I/ do I want to keep going - do I have it in me, and do I see its important to keep going. "Does God want me yet?" The vomiting, pain, constipation etc color my thinking, but so far my answer is an emphatic "Yes!" I am not done.
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