My third infusion of Avastin and Irinotecan went well. I felt lousy for a couple days but seem to be back to normal now.
Benefit Events Update
The two-day benefit, Kebostock, was a success — good weather; nice turnout; great music. At the end of the day, it hit me. I realized the immense effort, love and generosity put forth by organizers, sponsors, family, friends and the community. All in all, we estimate about 300 people showed up. I wish I could have spent more time visiting with everyone. Thank you!
The rest of this post is just personal or fun stuff — no relevant medical information.
A family friend graciously let Tina and I stay at their lake house. The morning of the event was so lovely that we decided to eat breakfast outside. We inadvertently locked ourselves out of the house. We had no keys and no phone — and no clothes really. We had no choice other than knocking on a neighbor’s door and explaining our situation. The neighbor turned out to be a member of the band Drop (dropatlanta.com), an Atlanta-based funky, psychedelic, improvisational jam band (think Grateful Dead). He extended every hospitality to us, clothed us in brightly colored hippy shirts and drove us to the festival. He brought along his guitar and played a set of music along-side Albert. Thanks, Craig!
Did someone really get a Kebostock tattoo?
Not someone — two people did!
I thought they were crazy but Matt and Will got tattooed prominently on their chests. I’m blown away and honored at their gesture. The coolest thing is that the tattoo artist, another good friend of mine from the 1990’s allowed me to tattoo my signature on Matt. I had never touched a tattoo gun before! I got a 20 second lesson on tattooing and was let loose. It was a lot of fun.
What happened to the Kebostock banner?
Friday night at Back Forty, there was a nice big banner hanging. Why wasn’t it displayed on Saturday?
The banner may or may not have been “stolen.”
I think credit for the idea belongs to my brother-in-law, Albert Simpson. He’s a musician who has played at other benefit events. He had the connections and know-how to get it done. When he recruited my mother, Cheryle Maudsley, to help, there was no stopping the event from becoming a success.
What will the donated money be used for?
I’m writing this update from the doctor’s office, while undergoing my second infusion of chemo.
About nine days into my first round of chemo, two weeks ago, I began having some lower abdominal pain. Pain and discomfort steadily increased over the next several days. I barely got any sleep the past three nights because of the pain and getting up frequently to use the toilet (or at least TRY to). I thought it may have been an expected side effect — constipation. But this morning at my doctor’s appointment, a urine sample revealed I have a urinary infection. That should be easily cleared up with antibiotics.
So all in all, so far, so good. Unfortunately I won’t get an MRI until six weeks from now, which is to say, we have to wait to know whether the chemo is effective or not.
My brother-in-law, Albert Simpson, has orchestrated a two-day benefit event for me in Gadsden, Alabama. Here are the details.
September 21-22, 2012
The party begins at Back Forty Beer Co with musical performances by:
Saturday Afternoon (noon to 5pm)
The family-friendly fun continues at Etowah county’s largest outdoor musical venue, Willie’s Woods. The day’s activities include:
- More music (see below)
- Silent Auction
- and lots of eating and drinking
Musical performances by:
Raffle tickets will be sold for the following items:
- Ibanez electric guitar from Oden Music Co.
($5/ticket, only 200 tickets will be sold)
- Fender Acoustic Guitar from Oden Music Co.
($10/ticket, only 200 tickets will be sold)
- Happy Everything Platter with Happy Birthday attachment from Gifts on Wings
- One set of drum sticks signed by Mark Herndon drummer for Leah Seawright and formerly the group Alabama
- His (Brunswick) and Her (pink, Cuetec) pool cues from Alabama City Billiards, ($10/ticket for BOTH cues, only 200 tickets will be sold)
- There will also be 50-50 drawings
Tickets will be available to buy soon as well as at the events.
Some artists have donated pieces for the benefit. Pieces include:
- Turned wood by acclaimed woodturner, Phil Colson
- Mixed media pieces by stencil artist, Nathan Phaneuf
- Found-object and variegated art by Sharon Maudsley
- Two Numbered fine art prints.
One is of a painting by Ted Kennedy (who died from the same cancer I have).
Food and drink will be available at the event.
- Good-ol’ church cookin’ by the Episcopal Church of the Resurrection
- Matt Keener will be on site cooking up his famous red beans and rice
My good bud, Jeremy Crawford will be supporting us by doing “Tattoos for Kebo” at his shop, Old School Ink, located at 154 Jester Parkway, Rainbow City, AL, (256) 442-5331.
Everyone, Come For the Fun
This is a benefit event to assist my wife and I in our struggle with my terminal brain cancer. If you were directed to this page for event details, but don’t know anything about me, you can learn more on the HOME page. Even if you can’t donate, you can come out as part of the community and have a good time.
In addition to sponsors listed above, I want to thank some others:
- We’ll be selling t-shirts designed by me to commemorate the event. Big thanks to my friends at Atlanta Shirt for donating shirts and printing! Ya’ll kick ass!
- Dr. Dierick and Holly Sparks for providing drinks!
- Tu’Kanoos for the armbands
- Paul Harris, State Farm agent
- Last and least, Kent Kimes for coming up with the name, “Kebostock.” Thanks, Kentavo!
It’s been four days since I received my Avastin and Irinotecan infusions. So far, it has been very tolerable. I’ve experienced some times of being very tired where my body felt like a lead weight and I slept or napped more than usual. No nausea or any other ill effects to report. If this therapy works and I can continue to tolerate it well, then I’ll be very happy. I have to give credit to Tina for making sure I stay hydrated, eat the right things and walk and exercise.
We now own the domain name, glioblasted.com. It’s just a little easier to type glioblasted.com into a browser instead of glioblasted.wordpress.com, but either URL will work. To be honest the decision kind of had to do with branding. Since I worked in advertising and web strategy before my cancer, I guess it’s kind of ingrained in me to think like that. One difference is that usually you WANT your site to get lots of page views. In my case it just means way too many people are affected by this horrible cancer.
In the beginning I wasn’t sure what the purpose of this site would be. It’s more clear to me now so I’ve begun to go back and edit some of the pages and posts in an attempt to make it easier for the disturbingly high number of people affected by GBM to distinguish useful information from my introspective ramblings.
The event plans for September 21 and 22 in Gadsden are coming along great. Some fantastic sponsors have been very generous, donating venues and services as well as items to auction or raffle off, including: music equipment, artwork, memorabilia, printed t-shirts and more. But the main attraction will probably be the bands that have volunteered to perform and getting to reconnect with old friends and my hometown community to celebrate life.
I’ll post more details soon.
Happy Labor Day weekend!