Inspiration from Randy Weston

Yesterday I was very fortunate to attend a talk given by the great jazz pianist Randy Weston-about his life and his music. Here are some of the things that he talked about.....when he was growing up, his parents generation felt it was very important to be "cultured"-so everyone either studied an musical instrument or went to art classes etc., went to hear music and to museums-all of that was a high priority-remember that Randy is in his 70's-and segregation was the rule while he was growing up. His parents also told him to "surround himself with the best minds".
Here are some other wonderful nuggets.....he equated "the blues" with an Egyptian word that meant "ancient memory"........."music is our first language"...."music is out spiritual langauge"..."music is a healing force"....and he said that we have to take music back into the community-get it out of the corporate world. That last one was ironic considering we were sitting in a room on the 5th floor of the ASCAP building ;-) A very inspiring experience! Thank you Elzy for including me!

Text of Steve Jobs' Commencement address (2005)

Hey everyone-it's been a long time since I've posted anything-and I'm working on a bunch of things for all of you-but today I ran across this in my inbox. Steve Jobs tells the story of his life in this commencement address to Stanford University. I found this to be very inspiring!
If you have been wondering how I'm feeling lately-the last part of his story really pretty much describes my life.
And interesting enough-the first part of his story is close to my story-I too am an adopted child.
Being adopted makes you are an outsider in society-but I've always found that to be a special gift. Because I was adopted, I developed a broader sense of humanity when I was very young. I told myself that I could choose anything that I wanted to be, since there were no constraints via family genes or expectations. So even though many of my so-called school chums were reminding me that I was different (i.e.-"you don't fit in")-I was off exploring ideas,philosophies, religions, cultures-creating who I wanted to be. It was and continues to be a very wonderful journey.
And, in case you're wondering right now-GIST is not familia-for the most part-there is a tiny , tiny percentage of cases where they have found GIST in family members. Dr Forte and I discussed that issue right at the beginning and will keep a watchful eye on Chad.

Text of Steve Jobs' Commencement address (2005)

Posted using ShareThis

Some back story on Gleevec

Here's an interesting interview with Brian Druker, the doctor who was instrumental in researching and testing Gleevec: http://www.nytimes.com/2009/11/03/science/03conv.html?_r=1&scp=1&sq=gleevec&st=cse

Dr. Druker says, "I think I’m more perseverance than smarts. There’s a basketball player who says, 'Hard work beats talent when talent doesn’t work hard.' Well, I work hard. I understood that this project was too good to give up on. My patients needed me to do something to help them. I did everything I could by getting them a drug I thought would work."

Diane still love us but … Part II

Diane is doing so great, it’s easy to forget how much she’s been through this year and overlook its ongoing impact. Hey, even she forgets, taking charge and jumping into the middle of things with her trademark enthusiasm.

At the start of this whole process, a friend urged Diane to practice saying no (ok, what she said was more colorful, but you get the picture). That’s still a work in progress. She really wants to be here for us, solve our problems, hold our hands through tough times and encourage us in our lives and endeavors. But the truth is she really must focus on her music and her health.

She’s still not 100 percent of her pre-surgery self. Diane’s daily chemo, Gleevec, has affected her memory and energy levels. She’s having problems concentrating and adjusting to all of the changes in her life. It’s really stressful for her to acknowledge that she cannot do as much as she wants. In fact, sometimes she doesn’t recognize her new limits until she crashes and burns.

One of my favorite examples of Diane’s giving personality: After two major surgeries, plugged into a zillion tubes and machines and barely able to speak, as soon as she saw me she said, “Yo, I have a great story idea for you!” That makes it hard to remember that she’s still recovering and can’t always play the role of therapist, advisor, helper, etc. She needs space to build her strength and take care of her many responsibilities.

So please think twice before picking up the phone for a gripe session or to ask for a favor. D-Mo’s sure to say yes, but it could end up costing more than we realize.

update on Gist Walk

Unfortunately I won't be able to do the walk-I have to work that day-but I am planning on going to the dinner. If anyone would like to go with me-let me know.
Pictured in this photo: Tania Stutman, me, Elzy Kolb, Russ Vines. Tania is an amazing woman who is a GIST survivor of over 10 years now, and the one who started the GIST Cancer Research Fund. She was on the first Gleevec trials back in 1999. She started GIST CRF by going-literally-door to door-asking if people would donate money to research-all by herself.
Last year, GCRF raised $700,000 for research-that's a long ways from going door to door!
Elzy, Russ and I met with Tania to see what we could do about helping her with her organization.Tania explained to us, that the biggest hurdle is getting doctors to "look" for GIST. Many times, as was the case with Tania, patients are mis-diagnosed, and that happens because many doctors are unaware that GIST even exists! So our goal is to get the "word out" about GIST. A recent Wall Street Journal article about Gleevec stated that GIST is often times fatal within 15 months of diagnosis. I am an extremely lucky person to be alive, considering my tumor was probably growing inside of me for the past 3-5 years. And I am extremely lucky that the oncologist I went to (and still go to) , the amazing Dr. Forte, knew enough to look for GIST. By the time they figured out what was wrong-it was almost too late-but they got it just in time.
http://www.gistinfo.org/press/gcrf-news/

our big band performs this weekend

I just got back from our first rehearsal since January for our gig this weekend-Sunday Sept 20th 4:30 PM on the Lake George Jazz Festival-and we are all so excited!
http://www.lakegeorgearts.org/lakegeorge-jazz.htm
It was a great rehearsal and a momentous occassion to say the least. The last time the band played-I wasn't with them-it was the benefit that they did for me. I could barely walk into the club that night. My lead trombonist and organizer of the benefit-Erick Storckman- reminded me tonight of his visit to me in the hospital on my second day after the second surgery. He told me how worried he was when he saw me that day-and how sick I was. Of course I barely remember any of this-I remember he was there-but not much more. We both mused about this tonight-and how it was amazing that we are back playing together again-and I am reminded of how incredibly lucky I am to be alive and to have an an incredible amount of support from my son, my brother, my family, my friends and this amazing band-amazing people.
We did a lot of laughing tonight-lots of jokes going around-eating pizza-talking-playing the music-working out trouble spots-not too many of those actually.
This festival is a wonderful event for us and our return to the stage-and a new season.
Eight months ago, I wasn't sure if I would be around-at all. But here I am-with the help of all of you-and I thank you!

more health update

My oncologists ' assitant-Kelley-called me today. They took another look at my blood-my AST levels are fine-but I am still deficient in vitamin D-by quite a bit-so I will continue to take my 2,000 units of vitamin D everyday. Everything else looks very good.
Here is an article from the Wall Street Journal about Gleevec-the drug that I'm on. I have all of those side effects-with the puffy eyes/edema being the recent ones. I hope I don't get those blood vessels bursting that they talked about-or I'll have to start dressing like Moira the Vampire-ha!
http://online.wsj.com/article/SB10001424052970203278404574412791106176098.html
I took a pilates class today-did about 1/3 of what they did-and left 15 minutes early so that I could swim. When they got to the lower abs-I had absolutely none-nada-it was like they didn't exist-bizarre. But I did well with the upper abs. I listen to my body-and when it hurts I stop-but I think this is good for me to do. Tomorrow-I try a gentle yoga class.
I started swimming in early July during my residnecy at the Virginia Center for the Arts-I have basically kept that up at several times a week. I also try to get several 2 mile walks in every week. Now I'm trying exercise classes-like pilates, or the gentle yoga class for strength. I've done yoga off and on for years-also Tai Chi-which I'll be going to on Friday.