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.

saw my oncologist last week

Hey you guys,
Just updating.......my levels look good-except for my AST-which is a liver enzyme-so they are running the blood thru another test.
My blood pressure was great as well as my pulse.
I had a long talk with Dr. Forte about gene mutation testing-he is having the original pathologist check some things-we're specifically looking for what type of exon the gene mutation is. The gene mutation test that is available is not FDA approved-and my health insurance probably wouldn't cover it-and-regardless of what the test said-Dr. Forte said I will be on Gleevec for the rest of my life-unless of course we get some evidence that I can be taken off of the drug-or-I have to go to a much stronger drug. I brought in an article about gene mutation testing and showed him-he had heard of the test-and took me seriously-so he is asking the pathologist to take another look see-"we certainly have enough tissue"-Dr. Forte said laughingly-referring to the 17 lb tumor.
He also told me I was an A Typical patient-especially for being a musician. I asked him what he meant by that-he told me that no one comes in armed with info like I do, nor, can they even discuss things like gene mutations-exons, Kit protein etc. We talked for a very long time-looked at articles on the web-articles that he has been collecting etc. It was a good meeting.
In November-we do a cat scan to see if there are any tumors.
By the way-he said sitting in the sun for vitamin D is only for teenagers and younger-it doesn't work on adults.
And lastly-at the end of our meeting we talked about jazz-which we always do. He talked about the Jersey Jazz Society-I told him the head guy for that lives in Montclair and he never answers my emails-he told me to use his name-ha! So there ya go-Dr. Forte is keeping me healthy-and forwarding my career-bonus.
Thank you all for being "my team" and for all of the support you have given me-there is just no way I could have gone thru and continue to go thru any of this without you.
love,
Diane