"Duetto" new cd is out!

The recording that I did with bassist Mark Dresser, recorded by CIMP records is out-the box of cd's arrived yesterday. Mark and I recorded this in August 2008 at the Central Presbyterian Church of Montclair, NJ. Then..as you all know...and the reason for the blog..I was diagnosed with stage IV..end of the line.. GIST cancer and my life took a big turn. So this release, is very special to both of us. Two of my birdsongs are on this recording, Hello (based on the chickadee's song) and If You'll Call Me, Then I'll Call You (based on the robin's song and Mark...you'll have to read the liner notes for that ;-) along with my composition For My Mother. Also on this recording, is a piece that Mark composed for me called Big Mama Heart, along with his compositions Para Waltz, Yeller Grace, Mattress On a Stick and Star Melodics. More details to follow soon......but in the meantime...thank you Mark Dresser for getting this together! Thank you Bob Rusch, and Marc Rusch for driving to Montclair to record this..to Susan Rusch for the delicious birthday cake that day and for calling Novartis inquiring about Gleevec..just in case my insurance would not cover it, and to Kara Rusch for the beautiful cover, to Gaylord French and the Central Presbyterian Church for allowing us to use that beautiful sanctuary and to Bob Dowling for tuning the piano and making it sing!

Novartis Oncology Kick-Off Meeting

Just returned home from speaking, along side with Tricia McAleer from the Life Raft Group, at the Novartis Oncology Kick-Off Meeting. This is a meeting at the Novartis campus where they talk about all of the research they are doing, and they like to hear from patients and other groups who are affected by or involved with said research...as in GIST and Gleevec. It was held in a fairly large auditorium,

with probably 250+ folks in attendance.













Before Tricia and I sat in those chairs, we watched a short video of their meeting from last year in Dallas, featuring the Pulitzer Prize winning author Siddhartha Mukherjee, who won the prize for his book.."The Emperor of All Maladies..A Biography of Cancer"...which I found to be very inspiring!

And, Novartis gave me a copy of the book-can't wait to read it!

Their moderator, Tracy, asked me about my symptoms, the various stages of the diagnosis, everything leading up to where I am now which is coming up to year 3...cancer free!
When I told the audience that the tumor was 13 lbs there was a huge collective gasp in the auditorium. Now, if you've ever heard several hundred people gasping at once, it can be quite a jolt, so I kinda laughed after I said that and said.."yes, that's like having twins or one really huge baby"...which of course they all laughed and the tension in the room was gone...and we continued.

I talked about the need for Novartis to educate us more about the science behind Gleevec, and what exactly is it doing in our bodies, what causes the side effects, are there nutritional deficiencies, and more information on the studies and stats of adjuvant therapy.

 After we spoke and left the auditorium, a doctor from Novartis came up to me, handed me his card and told me to get in touch with him and he would help me with a lot of the questions I had posed, so I hope to be talking with him in the very near future.

I also thanked all of them for their work on GIST cancer and on Gleevec...I don't think we Gisters could ever thank them enough.

They asked me for photos so I sent them photos of me at Lake George (very short hair), the recording session with the Inside/Out Trio (hair is curly and longer) the big band gig at Trumpets in 2011 (hair is still curly and much longer)...thought it would be good for them to see the healthy transformation.
 They were ecstatic to hear that I was back to performing, composing and teaching.

Tricia talked about the role of the Life Raft Group, their research, and their outreach. She also talked about the need for more information from Novartis and perhaps personal contact with patients to guide them through the process.

It was a really great morning, and a big shout out and thank you to Leslie Fields, their Associate Director of Patient Advocacy, for making it so easy and laid back for Tricia and I to participate (not to mention the yummy breakfast!)

Novartis lays off 400 employees

I just got a phone call from a friend of mine with the news that Novartis (East Hanover,NJ) has laid off 400 of their employees, transferring those jobs to India.
I don't know the entire new Health Care Bill, but I have been told that there is a provision in there that penalizes companies who outsource labor.
This decision was made now before those provisions are in place.
Although part of me is happy for the people in India, knowing that there is extreme poverty there, the other part of me is very upset with Novartis.
Gleevec was their biggest profit making drug last year-3.9 billion I believe is what I have read.
I am extremely grateful to Novartis for making Gleevec-which so far has kept me cancer free.
I am extremely grateful to my friend who worked there during it's development and to everyone else for that matter.
But when I take my dosage today, I am going to be thinking about all of those employees who have been laid off, in this very tumultuous economy, hoping that they were given a decent severance package and that they will find new employment very soon.
There just has to be a better way for us to have health care and new innovative therapies, without it costing others so much.

mystery of the hair loss.....vitamin D

So I heard from my oncologist-it seems I am deficient in vitamin D-so now I'm taking 2000 IU's a day. I also found some biotin shampoo and conditioner that doesn't have a lot of chemicals in it-so I'm using that too. In talking with friends about this vitamin D business-I have found out that a vitamin D deficiency is the number one deficiency in the northeast. So if you're feeling fatigue, hair loss, memory loss and foggy brain, it's probably becuase you're not getting enough vitamin D-and don't forget-you have to take it with calcium in order for your body to absorb vitamin D. You could also sit in the sun for 15 minutes a day-unfortunately I can't-it's one of the big no-no's while taking Gleevec. However, I have been getting in the sun for 5 minutes here and there-and then ducking for cover-ha! I did hear from someone with GIST-on the Life Raft Support Facebook page-where I posted the hair loss problem-and she basically said all of the above-so maybe the hair loss is a lot more prevalent than my doc or Novartis knows....I'll be letting them know, you can bet on that. http://apps.facebook.com/causes/144710/27148611?m=6d54c0aa
You guys probably know this already-but in case you don't-the other new health tip I learned is for people with allergies, to eat local honey-it has to be within a 50 mile radius of where you live-and that should take care of your allergies.