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ProtonPals                                                    e-NewsletterAugust  2010            
Beach  Woodie - 1949 Ford
Labor Day Banner


Dear :
 
Welcome to the ProtonPals and thanks for subscribing to the monthly newsletter. Please share the information and learnings of our group with your friends and family by Forward this emailforwarding the newsletter. Select this icon and enter your friends e-mail addresses.

One of the patients wives who became very active in coordinating the Wednesday night dinners passed away very soon after getting back home in New Mexico. Young and full of life she was best known by the Proton Center staff and the group who were in Houston in late June, July and the first week of August. Our condolences and our prayers go to Tony, her husband; Joe her son; step daughters and her family. Her friends at the Wednesday night diners sent a wreath and a card to El Paso where she was interred on August 20th. The obituary guest book will remain open until September 17th at the El Paso Times if you'd like to send your condolences.  Guest Book

As her aunt wrote "Your enthusiasm for life was contagious. You never let your sorrows diminish your happiness." 

Last month we wrote about a Korean War hero, Clayton McGraw. Clayton and his son John were the first father and son to be treated at the Proton Center and I got to meet, "Johnnie" as his mom calls him even though his a grandfather. John was treated in 2007 and Clayton just completed treatment this month. Both headed back to Sulphur Springs Texas where they very active in their church. Continued good health to you and thanks for your contribution to our country and to ProtonPals. 

Please note the following ongoing events that are held in Houston. It's a way to meet new friends, set up a network and learn more about the Proton Center and the M. D. Anderson Cancer Center. 
  • 1) The Wednesday dinners are held at a different Houston restaurant every week. They are coordinated by a member of the current "class" who posts the restaurant chosen and a sign up sheet for reservations. For August it was Jeanie and Dub Toliver from Oklahoma. Thanks Jeanie and Dub!
  • 2) The information sessions are also happening weekly on Wednesdays at 10:00 AM or 1:00 PM depending on the speakers schedule. In August, Carolyn Allsen, Nurse Manager, invited two alumni who were 3 year and 1 year post treatment to share their experiences. Thanks to Peter and Thomas who gave great talks. Depending on interest this can be repeated every two months if you're interested. And if you'd like to come and speak to the group Carolyn will be able to schedule these kinds of talks every month.
  • 3) The monthly tours are held in the evenings are in the third week of the month.
  • 4) the support group session are held the third Thursday of the month by the Social Workers.
Many of the Wednesday diners are getting photographed and their photos published in Facebook.  Please use this link to navigate to the photographs. When there choose the link to PHOTOS or to the PICASA tab. 
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Your ProtonPals,
Joe Landry, Ban Capron and Peter Taaffe
ProtonPals
July 30, 2010 

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In This Issue
Rx for Marriage
Weekly Information Sessions
The Separate Checks Wednesday Group Dinners
References I Use
Article on Lupron
Survey from Proton Bob
Part 5 of A Personal Odyssey
Rx for Marriage
As you probably know I'm always asking for personal stories and testimonials and this month in a complete surprise I received this wonderful and inspiring story by Thomas's wife, Dwan. Thomas gave a talk to the Wednesday group which Dwan attended along with other patients and wives. Both Thomas and Dwan will probably return to this Beam News information sessions and present their story in person. Please look up her web site  and I know she'd welcome a note of thanks. Thank you Dwan.  Joe L.
 
I circled the carousel of self-help books. Improve your marriage...better health... become closer to God... Each looked interesting. "Should I choose one?" I wondered. "Who am I kidding? I need them all."

I waved at Olive, my elderly friend, at the back of the grocery line and smiled, amazed at how fast she shopped. I had only been waiting twenty minutes.

Just then my phone rang. I trembled when my husband's number flashed on the screen, took a deep breath and
Dwan Reed
Dwan Reed
answered. "Did your results come in?"

He sighed, "Yes, and you're not going to believe this."

I waited for the good news.  Thomas's doctor, who obviously didn't know how well my husband took care of himself, had referred him to an urologist for cancer screening. "Dwan, I have prostate cancer."

I pulled the phone away from my ear and glared at it. Surely I was imagining this conversation. Thomas wasn't really on the other end of the line. Yes, that's it. Maybe one of those self-help titles took up residence in my mind. But the telltale number blinking on my cell's screen told me otherwise. I pulled the phone back to my ear. "Did you just say what I thought you said? Are you sure the doctor was reading from your chart?"

"I'm sure, Dwan. And it's not a slow growing cancer; it's aggressive. The doctor wants to begin treatment right away. He says I don't have much time to play around with this.

"Thomas, I don't understand. How does a healthy forty-nine-year-old man have prostate cancer?"
"I don't know, but I've got it."

"This makes no sense. Shouldn't there have been more warning signs?"

I don't remember what Thomas said after that. My mind drifted, searching for "normal," our way of life before this devastating diagnosis. I watched grocery items slide their way slowly down conveyer belts. Smiling clerks greeted customers, and baggers loaded plastic sacks and placed them in carts. I noticed another woman surveying the same carousel of books I had just circled. "I wouldn't read those if I were you, " I mentally challenged her. "You may receive a phone call with unexpected news."

And "normal" was nowhere to be found.

One phone conversation, and fear had barged into my world, trampling the carefree expectancy of long life. Suddenly, I felt like a very old forty-one-year-old woman who had gained an undesirable understanding of, "tomorrow isn't promised to any of us."

I dropped off my friend, Olive, at the senior center and headed home thinking about the blessings I had always taken for granted.  In spite of my husband's spirituality, strength, and hard-working nature, I sometimes joked that I was trapped in a "ground hog day" of a marriage, complete with the repeat of humdrum every twenty-four hours. 

My heart ached as I yearned for another eighteen years. I wondered, "What made me think it would last forever?"

Grasping the steering wheel with one hand and wiping back tears with the other, I petitioned God. "Lord, I love this man, but I know I don't always act like it. What a fool I've been." And as I pulled into our driveway, I continued, "God, Thomas is one of the best husbands and fathers in the world. Please forgive me for not being a better wife. What do I do now, Lord? Please save him."

I slowly opened the front door, hoping my husband would meet me and announce, "The doctor called and it's all a mistake. He confused my test results with someone else's." Instead, he pulled me to his chest and whispered, "Dwan, I love you... I don't know what to say." As Thomas leaned down burying his head in my neck, I knew we couldn't escape the reality of this illness that had invaded his body-and our marriage.

The coming months were difficult. We searched for a doctor who would address the lifestyle issues of a young man with an older man's disease.  With each serving of bad news, we cried and held one another, uncertain if we would be able to make love again the same way, uncertain whether my husband would have permanent incontinence issues, or worse.

Faced with the brevity of health, I wasn't ready to let go. I longed for the simplicity of what I assumed would always be, yet helplessly yielded to a different course for our future.

For weeks, we awaited Thomas's test results to determine if the cancer had spread.  The ever-present malignancy in our lives began to melt my fierce independence and Thomas's façade of indifference. As layers of buried emotions surfaced, I realized we'd lived together without truly knowing one another. I discovered that my husband was kinder, more loving, and enjoyable than I had ever imagined. And I hoped he discovered the same things in me.

The results came back. The cancer appeared to be contained in the prostate. The next step was to decide upon a course of treatment-surgery, radiation, proton therapy, naturopathic medicine, etc. Each therapy presented its own unique ramifications. For four months, we prayerfully studied each option and finally elected proton therapy and hormonal treatment.

Thomas took a two-month leave from work and rose before dawn each morning to drive across town for therapy. Day-by-day, his energy diminished while his slender frame surged to stocky proportions.  I witnessed my well-tempered, reserved husband become emotional, reflective, and at times, irritable.  A reluctant onlooker, I observed the passion in our marriage reduced to a kiss on the cheek as Thomas's testosterone level dropped to near zero.

Even though Thomas was the one with cancer and undergoing treatment, I realized we were a team-partners in this battle; and I was willing to do anything to ensure my husband would live. To aid in his treatment, I mastered the art of cooking cancer-fighting foods. I took over many of his responsibilities, and learned not to complain when I was tired from carrying his load-and mine. I encouraged him daily, even when I felt uncertain of the future.

In spite of the changes in our marriage, we grew in intimacy beyond the physical. As we connected with each others hearts, minds, and souls, our home became a place of peace and hope-a safe house from the troubles of life.  The shroud of disease lifted as we learned to laugh amidst trials and savor each new day.

A little over a year after my husband's diagnosis, Thomas is now cancer-free with minimum side effects-praise God! His illness turned our world upside down, yet brought us closer.  I don't know if our marriage would have ever come alive, if it hadn't been for prostate cancer. Prescriptions come in all strengths and forms, yet ironically, one of the most ravaging diseases in the world was the prescription we needed for a stronger marriage.

I never want my family to be affected by disease again, but thank God for the blessings that resulted from our journey. 
 
Bio for Dwan Reed
Dwan Reed, Realtor and Broker's Associate, resides in Houston, TX. She is a professional public speaker, freelance writer, and prison evangelist.  Visit her blog at Dwan Reed's Web Site
Weekly Information Sessions at the Proton Center
Coordinated by Carolyn Allsen, Nurse Manager (current schedule is posted on the ProtonPals website)

Date

Beam News For August ... every Wednesday

Time
Sept 1

No meeting this week

1 - 2 PM
Sept 8

Chuck Merrifield RTT
Therapy Supervisor for PTC
Excellent information on your treatment and photos of behind the scenes at PTC

1-2 PM
Sept 15

Amy Stahl MS CNSD, LD, RD
Sr. Clinical Dietician
Maintaining a Healthy Diet

1 - 2 PM
Sept      22

To be announced

10 - 11 PM
The Wednesday "Separate Checks" Meet Up Dinners
Coordinated by the Current Group

For the past three months the patients in the center have organized meet-up dinners at various restaurants around the Houston and it's been extremely successful as you can tell from the photos we've placed on Facebook.

It looks like the custom will continue but only if a new coordinator accepts the torch being handed off each time coordinator and her husband graduates and return to their home.  Jeanie and Dub Toliver took over from Julie Perea. Dub will "graduate" and they will be leaving for Oklahoma in a week.
Please consider that coordinating these events is a way of giving forward and really not very much work; you get to pick the restaurants you like for 6 to 8 weeks. It's all organized in a small ring binder and we're working off of a tried and tested restaurant list handed down by Don and Kim. Plus I'm available with some help. Also there's a list on the web site first published a couple of years ago by Trevor Bradway Trevor's Restaurant Recommendations.

Resources that Many of Us Use
The Newly Diagnosed Find These Very Helpful

Brotherhood of the Balloon - The web site, a newsletter and the book by Bob Marckini.  Bob's book, You Can Beat Prostate Cancer, is the starting point for many of the patients who have come to M.D. Anderson. Some centers like Florida and Loma Linda hand out a copy of Bob's book to every patient who comes for consultation. 

ProtonPals  - The main web site with the "fast response" Pal to Pal contact list, the "one pagers" on potential side effects and the anecdotes and testimonials provided to us by patients who have been treated at MDACC. It also includes resouce links, news about the center and an archive of the newsletters.

ProtonInfo Blog. - This Yahoo group was started by Rocket Scientist Fuller Jones and exists to provide information regarding proton beam therapy for prostate cancer (or other cancers), and to help anyone learn more about the treatment and the disease. Members post their problems and disease characteristics, and ask any questions. 
 
ProstateBlog - Jim Tuggey publishes a well written and rich blog about proton therapy treatment.  He has several testaments from patients who have completed treatment and are writing to him. The blog also has a very extensive resources list, and a link to our ProtonPals site. Thanks Jim for listing our ProtonPals site. As a result several readers have visited us. Some wives and caregivers may consider sending your story to Jim.

You Are Not Alone Now (YANA) - A site with extensive testimonials about all major modes of treatment and used by quite a few ProtonPals who are represented there. 
 
Financial Assistance And a friend sent this to me a couple of days ago and addresses financial help for cancer survivors.  AARP published this list recently where you can get assistance and grants for transportation, prescription and treatments.
PCRI Insights for August 10, 2010
A Quarterly Publication on Prostate Cancer

This is a quarterly publication underwritten by The Life Extension Foundation of Hollywood Florida. It's listed above as one that I read regularly and that you may be interested in some the articles they publish also.

Recently I forwarded copies to two close friends who were recently treated at the Proton Center under Dr. Lee's care and who are taking Lupron periodically. I thought the article titled TIP: Testosterone Inactivating Pharmaceuticals as important. It makes the case with the lead sentence "what if there were a highly effective treatment with reversible side effects, a treatment that not only worked inside the prostate but also had anticancer effect covering the whole body?"  Makes you want to read on doesn't it. The author describes how the pharmaceutical works to hold the tumors in remission. He also says the side effects are manageable but not trivial. Weight gain, muscle loss and low libido - are the biggest concerns.  At the Proton Center you're not only getting this TIP treatment but you're also getting proton radiation, a combination therapy that should be even more effective.

Additional articles in the months journal with supporting statistics:
  • Treatment Choices for Early(localized) Prostate Cancer
  • Should a Second Opinion be Obtained when a Prostate Biopsy is Positive?
To subscribe you can go to this link where you'll find archives of all previous PCRI Insights Prostate Cancer Research Institute Insights  or go to the ProtonPals website and down a PDF version of the magazine. A Copy of August Insights in PDF format
 
ProtonBob Survey
Expanded Prostate Cancer  Index Composite ( EPIC) Survey

Here is your chance to make a difference. Robert "ProtonBob" Marckini is constantly helping the brotherhood of prostate cancer patients and now he's asked that you take some time to fill out a survey by clicking on the link below.  This is the EPIC(Expanded Prostate Cancer Index Composite) survey that I believe all of the M.D. Anderson patients fill out at various stages of treatment and at the periodic follow ups.

As you know, there have been no clinical comparisons of prostate cancer treatment options. Medical insurers often use this as a reason to deny coverage for proton therapy. 

It is Bob Marckini's hope and expectation that when the results of our survey are tabulated and a paper is published, we can clearly show that there are real differences between prostate cancer treatment options.

While you've taken these surveys many times if you're an MDACC patients, that data is not available to Bob Marckini.  He's modified the survery slightly and added a few questions at the beginning. They are demographic questions about age, cancer stage, treatment location etc. They can help put your answers in context. All the remaining questions are from the standardized EPIC survey.

Donation Gift
A Matching Gift from a Texas Foundation with Rich History
Temple Foundation DonationBan Capron one of the founders, VP and Secretary of the ProtonPals presents a donation check from the T.L.L. Temple Foundation to Joe Landry, ProtonPals Executive Director. The donation which is part of a matching funds program at the foundation was for $300 matching two for one a donation given by a long time leader of the ProtonPals and 2007 graduate, Buddy Zeagler. Parts of the proceeds will be used to sponsor an exhibition at the Anderson Cancer Survivors Conference being held September 24th and 25th at the Omni Hotel.. There visitors will learn about the Proton Center,the treatment mode and have a chance to talk to two or three survivors who have been treated for prostate cancer at the Center.
 
Since it's inception in 1962 the Temple Foundation has fulfilled it's mission of enhancing the quality of life for the citizens of deep East Texas. The foundation has awarded over 3000 grants over the years totaling millions of dollars. Truely a way of giving back and our gratitude is for having Mr. Zeagler as a long term leader in the ProtonPals, his gift and thanks goes to his foundation for the support.
A Personal Odyssey - Part 5 of 8
Experiences at the Proton Therapy Center and Houston
 
This month we're going to postpone publishing the fifth part of a journal by one of our ProtonPals. I've had some feedback about the length of the newsletter since it seems some of you print it so you can read it at your leisure and I chose to publish Dwan's story, Rx for Marriage this month. On July 19th Gene visited Houston for his 3 month check up and all is well. PSA down to rock bottom

For a PDF version of Gene's interesting story please go to the ProtonPals website.

The Odyssey

About ProtonPals
Thank you for subscribing to the newsletter and using the ProtonPals web-site. You'll receive one or at most two mailings a month around mid month.  In addition to the newsletter we'll also send one or two additional emails of special events or news that are of interest to the group that month.

ProtonPals is a group of men who chose proton beam therapy to cure their cancer and were treated at the University of Texas M.D. Anderson Cancer Center  Proton Therapy Center in Houston, Texas. The "Pals" and their caregivers formed a network of Pals in order to:
  • Stay up to date with treatment cure results
  • Provide support to others and Center activities
  • Be informed on any side- effects
  • Promote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.
  • Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
Joe Landry, Ban Capron and Peter Taaffe
15806 Manor Square Drive

Houston, Texas 77062 - 4743
ProtonPals, Ltd.
 
Support ProtonPals by letting us know how you're doing.  As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're now tax deductible) at the address above.  Read more about about it on the website How to Help - Giving

ProtonPals, Ltd. is a 501 (c) (3) public charity501 (c) (c)
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