. In SF, the last time I saw an oncologistI FINALLLY got a chance to see a oncologist again. I have not been under the guidance of a specialist since I left SF. I have been very fustrated navigating the Mid Atlantic Kaiser. I'm a second class citizen here and have less rights and benefits than I do in SF. This has slowed the logistics to a crawl.
I have basically taken over all the management of my own care. The work that fell on my family and A-team now falls on me. In addition there is SF Kaiser, My personal life and everything else that is going on. Huge job, lots of stress in trying to get things done in an understaffed system etc. That is why only 5hrs of sleep a day. A bit of that stress has been released but there still is some. Luckily much of that time I should have been recovering, but without all the stress.
I had a few weeks to be my own oncologist, changing my intake of drugs, and planning treatments, since I did not have one for 5 weeks. I've made my "expert" recommendations for my own treatment to my new oncologist. Let's see if she gets PO'd and kicks me....
But then again, by the medical reports I am a dead man walking. First ones our were gruesome, "4-7 months", "as bad as it gets", so much doom and gloom. The docs started to change their story after they saw me make the miracle turnaround and fight back.
But to set the record straight, my situation is dismal and I need to manufacture a "hail Mary" to go on. Basically late stage lung cancer spreading all over. Non-operable.
Here is what I have:
Non-Small Cell Lung Cancer (many tumors, largest golf ball size)
Brain Metastasis (about 2 dozen tumors larges golf ball size}
Bone Metastasis , lesions
Spleen Metastasis, no big deal
I have basically taken over all the management of my own care. The work that fell on my family and A-team now falls on me. In addition there is SF Kaiser, My personal life and everything else that is going on. Huge job, lots of stress in trying to get things done in an understaffed system etc. That is why only 5hrs of sleep a day. A bit of that stress has been released but there still is some. Luckily much of that time I should have been recovering, but without all the stress.
I had a few weeks to be my own oncologist, changing my intake of drugs, and planning treatments, since I did not have one for 5 weeks. I've made my "expert" recommendations for my own treatment to my new oncologist. Let's see if she gets PO'd and kicks me....
But then again, by the medical reports I am a dead man walking. First ones our were gruesome, "4-7 months", "as bad as it gets", so much doom and gloom. The docs started to change their story after they saw me make the miracle turnaround and fight back.
But to set the record straight, my situation is dismal and I need to manufacture a "hail Mary" to go on. Basically late stage lung cancer spreading all over. Non-operable.
Here is what I have:
Non-Small Cell Lung Cancer (many tumors, largest golf ball size)
Brain Metastasis (about 2 dozen tumors larges golf ball size}
Bone Metastasis , lesions
Spleen Metastasis, no big deal
Oh and some healing rib fractures and bad hip.
On a rating of 1-4, it is a 4/4, "as bad as it gets". These words have been ringing through my head. I look at the reports and say, " that guy is a gonner", then I see my name on it, and rescind my opinion.
I hear stories from my elderly friends who have had cancer, walk around the hospital and see nurses and patients despondent about their situation. Often they have stage one or two cancers that may be operable.
"Stop whinging! I raise you stage 4 NSCLC with huge neucrotic brain mets sprinkled with bone & spleen mets." End of coversation.
Bottom line is my team has to manufacture a long shot situation. Big problem is you can traditionally only fight the brain and body cancer separately. I do have some things on my side. I am a young, asian, never have smoked, kayaker which lends me to some very promising options that are currently being studied in clincal trials. I am not going to be a guinea pig but have and will use the results from new research to craft my care.
Babe Ruth's Legendary Called Shot
I feel like the Babe. It's the World Series and I am up at bat. The team needs me. I take a few pitches and then point at the bleachers....
I need to deliver that home run.
albert
On a rating of 1-4, it is a 4/4, "as bad as it gets". These words have been ringing through my head. I look at the reports and say, " that guy is a gonner", then I see my name on it, and rescind my opinion.
I hear stories from my elderly friends who have had cancer, walk around the hospital and see nurses and patients despondent about their situation. Often they have stage one or two cancers that may be operable.
"Stop whinging! I raise you stage 4 NSCLC with huge neucrotic brain mets sprinkled with bone & spleen mets." End of coversation.
Bottom line is my team has to manufacture a long shot situation. Big problem is you can traditionally only fight the brain and body cancer separately. I do have some things on my side. I am a young, asian, never have smoked, kayaker which lends me to some very promising options that are currently being studied in clincal trials. I am not going to be a guinea pig but have and will use the results from new research to craft my care.
Babe Ruth's Legendary Called Shot
I feel like the Babe. It's the World Series and I am up at bat. The team needs me. I take a few pitches and then point at the bleachers....
I need to deliver that home run.
albert
