The most recent Kuato update
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.
January 15th, 2007 at 2:03 am
Since they are going to yank a bunch of stuff out of you, this sounds like a good time for a subcutaneous multi-media install. Plenty of room for external usb ports, and maybe a mini fridge ala Binder.
Hang tough, were all pulling for you.
January 15th, 2007 at 5:21 am
Kill Kuato Joe! Hang in there mate.
January 15th, 2007 at 6:09 am
Bah!
My thoughts and prayers are with ya Joe! The Big Budda on Lantau is watching out for you!
January 15th, 2007 at 7:22 am
fred, I asked for an intravenous iPod, but my insurance wouldn’t cover it.
January 15th, 2007 at 10:12 am
Or may instead of a mini-fridge…how about a keg-erator?
Seriously – my thoughts and good mojo are directed at ya, Joe.
January 15th, 2007 at 12:31 pm
As the others have say, my thoughts are with you. I hope for the best.
January 15th, 2007 at 3:41 pm
I’m hoping for the best for you Joe.
What is the time frame for surgery. I hope you don’t have to wait long.
January 15th, 2007 at 7:44 pm
Hey, you have an entire new family of Leiomyosarcoma (LMS) survivors now!
We have a few on-line discussion groups, research funds & projects and sites on LMS It’s far from over, dude!
January 15th, 2007 at 9:08 pm
Joe, you are in my thoughts. I was wondering how you were doing, but I knew that these tests can just grind on for a long time.
January 16th, 2007 at 12:25 am
Holy F***ing #$%^&*())(&^%#$$
I’ll keep my finger, toes, and all the other prehensile appendages crossed. All good thoughts & karma beaming at you…
January 16th, 2007 at 8:30 am
Now listen up, you cancerous Kuato piece of shit. See this? This… is my boomstick! The 12-gauge double-barreled Remington. S-Mart’s top of the line. You can find this in the sporting goods department. That’s right, this sweet baby was made in Grand Rapids, Michigan. Retails for about $109.95. It’s got a walnut stock, cobalt blue steel, and a hair trigger. That’s right. Shop smart. Shop S-Mart. You *got* that?
Beware Kuato, Beware…
Have Faith Joe, my thoughts are with you too.
January 16th, 2007 at 9:34 am
We’re pulling for you, buddy.
January 16th, 2007 at 10:52 am
Hey Joe!
I’m one of those LMS members Sharon from SF talked about. “It’s far from over” No better words to hear. Check us out and see for yourself. You are not alone.
Lynn
PS: I like the install ideas!
January 16th, 2007 at 1:47 pm
Joe, never give up, never surrender
January 16th, 2007 at 2:03 pm
*love*
dammit joe…. i hate to hear that…. but methinks all the love and thoughts from us should help…. positive thinking man, it goes far.
January 16th, 2007 at 2:04 pm
So say we all!
January 16th, 2007 at 2:05 pm
You have a lot of homework to do about Leiomyosarcoma (LMS).
Let’s get to it! Join one of our on-line discussion groups about LMS.
WE CAN HELP! NO KIDDING!
Look at the Patient Resources on http://www.LMSdr.org
Sharon in San Francisco
ULMS – 5 yr. thriver!
January 16th, 2007 at 2:10 pm
Cyborg Joe…I love it! Imagine all possibilities.
January 17th, 2007 at 12:05 am
[...] Joe’s latest Kuato update. You can read up on Kuato here. And remember if you want to help Joe out, you can contribute to the Kill Kuato fund on the right side of the page. [...]
January 17th, 2007 at 7:15 am
Dear Joe: You’re starting a journey that none of us would have chosen to take, but here we are together. Those of us with LMS have lived every moment you’re living and know exactly what you’re going through. I don’t know how old you are – it really doesn’t matter – but when you face this monster it’s just plain scary. I live in Texas now but was born and raised in Arizona and my husband and I are moving back in a few weeks to Gilbert. I imagine I’ll be going to Tucson for my treatment so please let me know what’s happening with you. There aren’t alot of us with LMS or even Sarcomas but we are here and we can help you. Take very good care.
Patti
Fighting the Dragon for 15 mths
January 17th, 2007 at 10:16 am
Joe.
Good luck to you in you battle with Leiomyosarcoma — a word unfamiliar to everyone in my family up until September of last year. My dad Dr. Melvin Bottorff is in Texas (Sam Rayburn Lake) fighting LMS , his originating in the GI trac as well. He is alive today and kicking – - at his home overlooking the lake and surounded by his friends and family.
His website is at http://www.melvinbottorff.com .
Good luck to you – you will be in our thoughts .
Brian Bottorff
>Dr. Melvin K. Bottorff, FACOG
January 25th, 2007 at 1:31 pm
Wow, some “streams crossing” going on with the wingin’ it posts and the LMS support group people. I think it’s a great thing. More support all around for individuals with LMS, and you guys get to enjoy the hillarity that is Wingin’ It!