We used to have 2 kids but they grew up so now we just have animals. They eat less, don't ask for money, and think we're still the smartest people on earth. I would post pictures of them but they never let me take any, so...
Mom asked me to share what happened at the conference we attended in New Orleans. So interested or not, here goes:
First, it was impressive and very insightful. The majority of the discussion was on detection. The stats on Pan Can are so negative because 90% of the time it's discovered too late. There are few symptoms other than late stage symptoms so it's most often overlooked. The theme of the doc's was, "If you don't suspect it you can't detect it!" Most docs always look to something else. Mine did. I had a line of docs over 3 days tell me it could be anything BUT pancreas cancer. I was too young. I had no symptoms. I wasn't losing weight. Etc. It took one doctor, who perked up when I told him of our family history, to pull the trigger on the right test--and it was discovered. Anyway, most of the new developments are around earlier detection. They showed a new 'Geiger counter' that could react to dyes during surgery to find the tiniest of tumors. They have a new tracer that follows the path of disease to reveal where it's spread. They are working on a new type of liver surgery where they can remove the liver for a day to examine thoroughly (since 99.9% of PC patients die from liver tumors, not of the pancreas). Then lastly they have a new liver treatment called PRRT they are trying to bring to the States. It holds a lot of promise and has shown great results in Europe. Overall I was encouraged that so many new developments are occurring--that my hopes rest largely on just hanging on, as they work them out. I certainly have a better outlook than many before me just because of the advances being made.
Second, it was depressing. The good new was it's finally getting funding, attention (Patrick Swayze, Steve Jobs, etc.) but the bad news is it's an insidious disease that doesn't like to go away. When treated it just finds a new home. It was pretty overwhelming talking to fighter after fighter who has had years of surgeries, chemo's, complications, etc. But I suppose the good news is islet cell, my rare form, is at least somewhat treatable and many have lived with it for 7-10 years (95% PC diagnosed live less than 5). And again, based on the advances, I should be able to fight even longer. And hopefully even beat it.
Lastly, New Orleans is really cool--weirdly so. We got to spend the evenings exploring and we agreed it now tops Vegas as our once in a great while gotta-do trips for people watching, food, and shopping. We had a blast listening to the street musicians. I even had my pic taken with Grandpa Elliot, of "Playing For Change" fame. And the food--wow--amazing. I have never seen so many restaurants. And eaten as much rich food. I can't eat red meat or shellfish or sweets but I managed to do away with a lot of redfish. We loved the history and the sights. But hated Bourbon Street (slimey). We hope to go back this winter when we have some time to digest more than the Creole cooking.
We are sorry we missed the wedding but frankly it was meant to be. We met several folks with nearly identical histories, learned of new doctors and treatments, and left feeling way more empowered to fight. We are even looking in to 2 specialists who do nothing but treat neuroendocrine disease. Rare. So, one more tool in our arsenal--knowledge.
As for my health, I was clean last scan Sept. 1 and have another November 30th. The docs said the hole in my liver, left by the last surgical treatment, is closing and there was no sign of any spread or new growth. One scan at a time.
Now, can you see why I love the animals so much? Way better to enjoy them than worry about this stupid cancer thing. And so much cheaper than therapy!
BTW--Karen just ordered a new couch with a hide-a-bed so we can have guests now. She's getting the place fixed up nicely. New floors, totally revamped electrical, decorating improvements, etc. The guy who owned it the last 30 years was, well--a guy, and was cheap to boot. We've got a long list of things to fix that he 'duct taped'. But you know Karen--she's a maestro at making a home out of whatever. Getting there. Come visit!
Cheers,
Stephen, Karen, Lola, Otis, Elmo, Lily, Skyler, Hannah, Bo Jangles and 3 kitties waiting to be adopted.
4 comments:
Wow! Your Maine Coon cat looks so much like our Radar. My heart jumped when I saw him.
Cute pets...and cute grandkids...the staples of our blog. (<>:
Wow. Thanks for that update. A lot to process. And I don't mean the glamour shots of your beasts. The cancer seminar stuff is interesting and heavy. I'm impressed with your attitude and energy.
Can you post some pics of your new place?
We should try to come visit this year... if it's ready.
It's amazing to see two dogs sharing the same space. They must be friends. Very cool.
Steve, is Lily the one on the right in the last picture? She is my pick. They all look so relaxed. Good pictures.
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