- Joined
- Mar 5, 1999
- Messages
- 34,096
Things got so confused during this adventure of the pancreatic tumor (cancer?) that I finally gave up on trying to post anything about health and said I wouldn't post any more reports and didn't. But, finally, thanks to hard meat testing, I think we finally know where we are.
Briefly (I could go into the gory details and make it painful but will try not to), the story goes like this.
First week in March went to ER at St Marys for pain, level 10. 3 or 4 days of pix and tests and best they could come up with was "some problem with pancreas."
Sent to West Valley Imaging for PETscan. Results: 5cm pancreatic adenocarcinoma. Essentially, a death sentence.
My GI doc says, "to make absolutely sure let's get a biopsy." Sent to California Pacific Medical Center, supposedly one of the best for procedures like this) in SFO for procedure. Results: Tumor benign but ducts blocked.
GI doc says, "we got lucky. We'll stent the blocked ducts and carry on with life."
Back to CalPacMedCtr for stents. Results: Got one stent installed but failed on pancreatic duct. Also noticed duodenal ulcer. Take Nexium.
GI Doc says, "think we're okay. We'll go back in two months for stent evaluation and another try at pancreatic duct stent"
Two months later at CalPacMedCtr. Results: Stent removed and duct (bile or bilary) stayed open. Tried pancreatic duct stent again -- failed. Definite change in ulcer appearance. Looks like malignancy. Biopsy performed.
Two weeks later biopsy results get to GI doc who says, "CalPacMedCtr biopsy says you have a slow growing carcinoid in duodenum. What do you want to do about it?"
I say, "sit on it for six months, then pix and test and reevaluation."
OK.
About a month later another pain (level 10 again which none of my meds will touch) generated trip to St. Marys ER. Results: The "slow growing" carcinoid had doubled in size in 6 weeks -- 3cm to 6cm -- and it is definitely "do something" time.
GI doc says, "you've graduated. Will send you to oncologist.
Went to oncologists. He reviews all the stack of the med file and says, "It's the Whipple or just wait it out." Wait it out means call hospice and get the wills updated.
I decide to take a look at the Whipple possibility which may or may not be possible at this point. Thanks for poor work by the highly touted CalPacMedCtr I'm 7 or 8 months behind the curve. I should have been seeing the surgeon more than half a year ago trying to figure out what to do. The primary tumor of the pancreas has mastastisized to the duodenum and possibly the liver (can't see) so the situation is far more advanced than it should be. And that's the kicker, if it's advanced too far the Whipple is a waste and options are alternate treatments (chemo and radiation therapy primarily) which oncologist said won't work well in our situation. Call hospice!
If the Whipple is a possibility there lies the decision of "to Whipple not to Whipple." I had originally done my research on this procedure and deemed it so invasive and damned right awful (I figure they cut out 5 or 6 pounds of guts and parts -- but the upside is there's nothing left inside you to get cancerous again) that I wasn't going to do it and would just opt for hospice. I've called them and got my foot in the door already. But then........
I started doing more puja and meditation and playing my Medicine Buddha CDs and had a somewhat profound and also somewhat unwanted revelation. As the Buddhist I want to try to be suicide is out of the question and it's my duty to try to stay in this body I've been renting for as long as the body will provide refuge. This means if it's possible I HAVE to try the Whipple or drop myself down a few notches on the "Good Buddhist Rating" scale which is something I really don't want to do. I was given the pancreatic cancer to see how I'd deal with it and I've got to deal with it the very best damned way that it available to me. Everything is a test, believe it or not. So, I'm stuck.
Bottom line: If Whipple is a decent possibility then I HAVE to try it. If it fails or is NOT a possibility then I have to try all alternate methods the medical community has available. When everything has failed only then am I free to call hospice and check out. If it succeeds then I am still stuck with trying to maintain this body for as long as it can be maintained and that's another regimen.
So, there you have it. The only certainty in all this is there's a hell of a lot of pain, misery and frustration associated with it which generates anger and that can also be tossed into the pot.
I'm going to keep on doing what I've been doing, put up the best damned fight I can, and let those karmic chips fly long and far and land where they want to.
Of course, all those prayers, well wishes, positive vibes will be appreciated more than anybody will know except me but I don't want any tears or "poor Old Uncle Bill" hangers around. We're going to do this thing right and with max continous power. For us there simply ain't any other way.
Ayo Gorkhali!
Briefly (I could go into the gory details and make it painful but will try not to), the story goes like this.
First week in March went to ER at St Marys for pain, level 10. 3 or 4 days of pix and tests and best they could come up with was "some problem with pancreas."
Sent to West Valley Imaging for PETscan. Results: 5cm pancreatic adenocarcinoma. Essentially, a death sentence.
My GI doc says, "to make absolutely sure let's get a biopsy." Sent to California Pacific Medical Center, supposedly one of the best for procedures like this) in SFO for procedure. Results: Tumor benign but ducts blocked.
GI doc says, "we got lucky. We'll stent the blocked ducts and carry on with life."
Back to CalPacMedCtr for stents. Results: Got one stent installed but failed on pancreatic duct. Also noticed duodenal ulcer. Take Nexium.
GI Doc says, "think we're okay. We'll go back in two months for stent evaluation and another try at pancreatic duct stent"
Two months later at CalPacMedCtr. Results: Stent removed and duct (bile or bilary) stayed open. Tried pancreatic duct stent again -- failed. Definite change in ulcer appearance. Looks like malignancy. Biopsy performed.
Two weeks later biopsy results get to GI doc who says, "CalPacMedCtr biopsy says you have a slow growing carcinoid in duodenum. What do you want to do about it?"
I say, "sit on it for six months, then pix and test and reevaluation."
OK.
About a month later another pain (level 10 again which none of my meds will touch) generated trip to St. Marys ER. Results: The "slow growing" carcinoid had doubled in size in 6 weeks -- 3cm to 6cm -- and it is definitely "do something" time.
GI doc says, "you've graduated. Will send you to oncologist.
Went to oncologists. He reviews all the stack of the med file and says, "It's the Whipple or just wait it out." Wait it out means call hospice and get the wills updated.
I decide to take a look at the Whipple possibility which may or may not be possible at this point. Thanks for poor work by the highly touted CalPacMedCtr I'm 7 or 8 months behind the curve. I should have been seeing the surgeon more than half a year ago trying to figure out what to do. The primary tumor of the pancreas has mastastisized to the duodenum and possibly the liver (can't see) so the situation is far more advanced than it should be. And that's the kicker, if it's advanced too far the Whipple is a waste and options are alternate treatments (chemo and radiation therapy primarily) which oncologist said won't work well in our situation. Call hospice!
If the Whipple is a possibility there lies the decision of "to Whipple not to Whipple." I had originally done my research on this procedure and deemed it so invasive and damned right awful (I figure they cut out 5 or 6 pounds of guts and parts -- but the upside is there's nothing left inside you to get cancerous again) that I wasn't going to do it and would just opt for hospice. I've called them and got my foot in the door already. But then........
I started doing more puja and meditation and playing my Medicine Buddha CDs and had a somewhat profound and also somewhat unwanted revelation. As the Buddhist I want to try to be suicide is out of the question and it's my duty to try to stay in this body I've been renting for as long as the body will provide refuge. This means if it's possible I HAVE to try the Whipple or drop myself down a few notches on the "Good Buddhist Rating" scale which is something I really don't want to do. I was given the pancreatic cancer to see how I'd deal with it and I've got to deal with it the very best damned way that it available to me. Everything is a test, believe it or not. So, I'm stuck.
Bottom line: If Whipple is a decent possibility then I HAVE to try it. If it fails or is NOT a possibility then I have to try all alternate methods the medical community has available. When everything has failed only then am I free to call hospice and check out. If it succeeds then I am still stuck with trying to maintain this body for as long as it can be maintained and that's another regimen.
So, there you have it. The only certainty in all this is there's a hell of a lot of pain, misery and frustration associated with it which generates anger and that can also be tossed into the pot.
I'm going to keep on doing what I've been doing, put up the best damned fight I can, and let those karmic chips fly long and far and land where they want to.
Of course, all those prayers, well wishes, positive vibes will be appreciated more than anybody will know except me but I don't want any tears or "poor Old Uncle Bill" hangers around. We're going to do this thing right and with max continous power. For us there simply ain't any other way.
Ayo Gorkhali!
