ProtonPals E News March 2009
WHO ARE WE? The following is from the protonpals.net web-site WELCOME PAGE as well as our new brochure. ProtonPals, Ltd. is a support and outreach group of men who choose proton therapy treatment at The University of Texas M. D. Anderson Cancer Center Proton Therapy Center in Houston, Texas to cure their prostate cancer. The “PALS” formed a network and developed this web-site in order to:
- Stay up to date on treatment cure results
- Provide support to others and Proton Therapy Center activities
- Be informed on side effects among the group
- Promote proton radiation as the best cancer cure
- Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
ProtonPals is the Exclusive Organization for the Patients of The University of Texas M. D. Anderson Proton Therapy Center.
As you can see we are here for you but we also want to promote proton radiation and The University of Texas M. D. Anderson Cancer Clinic.
There are two ways you can help the hospital. You can join us and actively promote proton radiation and now there is a link on the web-site for donations. To promote proton radiation treatment you can direct prospective patients to the http://protonpals.net and have them click “Just Been Diagnosed” and also use our new brochure. We are hopeful that M. D. Anderson will send you the brochure in a future mailing, but it is available to you on the web-site now. New ProtonPals Brochure -February 2009
SUPPORT GROUP MEETING MARCH 25th The regular monthly support group meeting will feature a current patient, Al Brown, who’s a strong advocate of proton therapy and a very interesting man. Al started treatment at the proton center around the 9th and he will outline his journey in his talk, “One Man’s Journey”. I think it will be about how he started in Chicago where he’s from and took a round about route in the U.S. cancer centers and eventually got to the University of Texas M. D. Anderson Cancer Center. It involves many roadblocks and hurdles some of which we’ve all encountered.
DEDICATED TO YOU!
“If I should write a book for you
That brought me fame and fortune too
That book would be like my heart and me
Dedicated to you.” “Dedicated to You” by Ella Fitzgerald
Remember that song by the Mills Brothers and a young Ella Fitzgerald from 72 years ago? You weren’t born yet? Well that’s ok, because Ban and I are still going to use this as a way to dedicate this issue of the newsletter to Nurse Tai Ly. There are many who helped the ProtonPals’ and the Proton Therapy Center’s cause over the past 3 years but no one has been more appreciated, consistent in here service nor signed more members than Tai Ly. ![Tai Ly_thumb[18]](http://protonpals.net/wp-content/uploads/ProtonPalsENewsMarch2009_B2B6/TaiLy_thumb18_3.jpg "Tai Ly_thumb[18]")
Those are excellent reasons but we have other more important reasons. Here are just a few.
My initial contact came two years ago when Marcia and I were in the examination room for our original consultation with Dr. Lee. Here I was, with that “deer in the headlights” look, trying to stay rational, armed with a list of questions and statistics from my Baylor urologist and taking notes. Tai’s looking at a stressed out man and she says, “If you want this proton therapy treatment you should speak up and tell Dr. Lee.” I don’t know about you but I didn’t receive a hard sell from Dr. Lee and that her prompt made the difference in my life. She’s continued to support me during treatment, has handled all the referrals and questions from the Pals that I’ve given her and has even walked questions printed out on paper to Dr. Lee just so he wouldn’t miss the email in his Blackberry. She continues to call attention to the ProtonPals and hands out the brochure and a copy Ban’s “My Journey” to many new prostate cancer patients on a daily basis.
I have a collection of writings from patients that speak volumes about her caring and support for us, her “roosters” as she likes to call us as she is the “mother hen.” Here’s an anecdote from Buddy Z. in his 2007 testimonial on the web-site as he described his journey to the Proton Center.
“A friend of mine who was formally on the board of regents at U.T. made some phone calls, and the next day I received a call from our beloved Tai Ly, informing me that my appointment had been booked for the following week—another miracle. I arrived at PTC with my own “self-righteous” game plan to ask a battery of questions, and “interview” the medical staff. When I told Tai of my intentions, she stepped out of the exam room, and I overheard her saying she needed a few moments alone with her patient. She stepped back into the room, shut the door, and in a loving way, but in no uncertain terms, set me straight about how I would conduct myself if I wanted to hold out any hope of becoming a patient at PTC. Luckily I was approved for PT, and I am convinced Tai Ly was “put” there to save me from my own stupidity.” Buddy Z.
Buddy also talks about those intersections in our lives where certain roads taken and travelled make all the difference in our current lives.
IF I hadn’t been assigned to Tai Ly? Well, it seems to me at least, that there may very well exist what some refer to as a “Divine” purpose. I hope I will never forget each and every one, but until I draw my last breath, I will always remember Tai Ly. Her kindness, her compassion, her comforting care, and her smile—bright as the noon of Creation. God bless Tai Ly…God bless Tai Ly…may God richly bless Tai Ly. Many years ago, a friend of mine shared his idea about how he thought we should live our lives. He said, “When we get to the gates of Heaven, there will be a sign posted there with only one question on it. It will ask, ‘Did you comfort the heart of JUST ONE person who had lost all hope for peace?’ ”
UPDATES AND ADDITIONS TO THE SITE? Ban and I continue to work on the web-site to make improvements and update it with new information we receive them from the ProtonPals. Recently we’ve updated the PSA response showing almost 2 years post recovery for a few patients. I’m coming up on my 2nd anniversary in mid April and my October results were 0.3 ng/ml. I’m feeling great and trying to exercise between work on the web- site and the incorporation of the ProtonPals. If you were in the original group from mid- 2006 with nearly three years post treatment we’d appreciate knowing how you’re doing along with your PSA response numbers. According to Dr. Lee, I probably make put more emphasis on this number than warranted but it’s one of the few numbers that works it’s way into graphs about cure rates and conversations with your friends. Wouldn’t it be great if side effects were quantifiable! Like “what is the number of your woody?” (erectile function!) indicating any ED side effects. (Your PalJoe is trying hard for a little humor here.)
NEW BROCHURE? We have a new brochure on the web-site.New ProtonPals Brochure -February 2009 Do what our Pal from Oklahoma, Glenn Dunn does when a friend wants some more information. He counsels them and relates his experience with the Center but also gives a copy of the brochure. Please print a batch on your color or B/W printer and when you’re speaking to a local social or church group about your experiences you can give them the brochure. We hope the brochure will lead them to 1) the Proton Therapy Center at M. D. Anderson and also very importantly 2) the ProtonPals. We don’t have the budget to ship the paper copies but I can outline a way for you to easily have the electronic copies sent to your local FedEx Kinko store. Two hours later you can pick them up - all folded and on heavy brochure stock at the designated store. You can consider this a way of helping the ProtonPals and giving back to the Center. Bob Jernigan, C.S. Brands in Tyler, TX, an early ProtonPal, used this way to print a batch for the Proton Center a few months ago.
GRADUATION DAY? On February 25th and 26th a total of 22 patients completed their treatment at the Center and a large luncheon was held. As you can tell there were many photographers as well as whole 
families who gathered for the celebration, and Goode food to eat. One family from Wichita Falls represented three generations, a father who was completing his treatment, his son and grandson. The center had been planning treatment completion for all these patients on the same day in order to shut the equipment down at the end of the week for a major maintenance turnaround. Work on the equipment was completed in short order and the center was back up and in operation by the next Tuesday and treating patients starting on Monday March 9th.
A MINI PROTON CENTER? M.D. Anderson has an affiliate in Orlando that you might not hear about in the hallways in Houston unless you’re in the corporate suite. It is a rather large 10 story cancer and research center with an advanced radiology clinic serving the central Florida area. Three years ago the clinic contracted with American Shared Hospital Services (ASHS) to install a one room proton therapy system in development by Still River Systems, an off shoot from the Mass. Institute of Technology that represents a compact proton generator. The first systems are operational and one will start up later this year at a St. Louis facility. So by 2010 the U. S. will have many proton therapy sites and we’ll have two M. D. Anderson proton centers, PTC - H and PTC – O.
PROTONPALS is now PROTONPALS, LTD. In order to get an exemption from the IRS to qualify as a 501 ( c) (3) we registered ProtonPals as a public charity with the State of Texas, with 3 directors - Ban Capron, Peter Taaffe and Joe Landry, we have articles of incorporation, a set of by-laws, and I’m drawing up a preliminary budget for the next 2 years. Being a public charity will let us raise a modest amount of funds from grants and public contributions to 1) obtain insurance that will indemnify the leaders and volunteers, 2) support the publications of brochures and web-site, 3) contract for a professional web-site and 4) conduct outreach public and professional educational programs on proton therapy.
Giving Back? You probably received a letter from M. D. Anderson Cancer Clinic office last week regarding the Spring Appeal to the Annual Fund. While the research work President Mendelsohn describes is very advanced and important, so is the therapy provided to you by the Proton Therapy Center. You can count the number of centers in the U.S. on one hand. If decide to contribute it may not be to the Spring Appeal but you can dedicate all or part of your contribution to the work the Proton Center is doing by so designating as explained here. http://protonpals.net/how-to-help-giving
Joe Landry and Ban Capron, March 17, 2009
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