Ok, here's where I'm at.
Just talked to my new surgeon this past Thursday. My case is still a mix of good and bad news.
The GI doc biopsied a piece of the tumor back when I had the endoscopy and colonoscopy in Dec. He came back with a diagnosis of Leiomyosarcoma. Which is very nasty. To be frank, I pretty much thought the game was over, time to move into the mountains and call it quits.
However, the surgeon says that my needle biopsy from WAY back, and the growth of this thing, are a bit inconsistent with Leiomyosarcoma. He believes what when the tumor is removed, we will find a mass that is a high grade sarcoma (which is still bad) that should respond to chemo and radiation (which is good.)
For all practical purposes, this thing is uncurable, but it MAY be manageable. No way to know until it's taken out.
This surgery is going to be a big deal. Remove as much of the tumor as they can, as well as part of the colon, the small intestine, maybe remove the spleen, and resection the stomach. It will take 3-5 hours. It will be done here in Tucson.
So, that's where I am. Sorry I haven't written in a while, but I wanted to have something more significant to say than "still waiting," though that's what I'm doing.
I wasn't sure I wanted to do this, but people have been asking how they can help. As with a lot of things, this whole process has had hidden expenses I wasn't expecting. Extra tests, doctor and hospital fees, etc. I have insurance, but I will still have large out of pocket expenses do to this. On the right side of the page, you will find a donate button to the "Kill Kuato" fund. If you'd like to help me out, you can't imagine how much I'd appreciate it.
I want to thank everyone who has emailed, called, and voicemailed, and sent me words of encouragement and advice. You have no idea what it means to me.
Always nice to have a new KAMN...
Hi Joe.
It looks like I'm gonna be the first to leave a message on this thread. I'm a bit lost for words, for which apologies. But I just can't bring myself to sound comical or smartassy about all of this. For over a year now I've listened to you guys on the podcast, and somehow that creates a sense of companionship, even if it's virtual and imaginary, or auditory. I just feel truly crap to read this latest update. I sincerely hope it turns out to be a treatable s.o.b. in the end. Other than that, I can only think of donating and sending you my most heartfelt best wishes and a friendly hug.
Agreed, it's tough to find words.
Joe, your situation seems to be effecting so many, especialy the ones who have gone through it or have stood along side a family member with the same overwhelming challenge. We understand and are there for you.
When my Dad was diagnosed with cancer, he felt fine. He wasn't depressed about the diagnosis and his good spirits helped to battle the tumors. Keep up the good thoughts, they fuel your healing more than anything!
God bless you my fellow geek!
Andy
I don't know what to say other than godspeed, Joe. Prayers are with you.
As the others said - sometimes words just don't work (darn it - someone invent telepathy
All I can say is that our thoughts and prayers are with you.
Best Wishes
Thanks, guys. I appreciate it. It feels good to know others are pulling for me.
I am sorry about the bad news.
I dont know if this news will be of help at all but there is a new treatment being investigated.
http://www.newscientist.com/article/dn10971-cheap-safe-drug-kills-most-cancers.html