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ProtonPals                                                    e-NewsletterNovember 2010
Greetings!

Rockwell's Freedom From Want
Happy Belated Thanksgiving.

On the morning of Thanksgiving Day with the turkey in the oven and my visiting family still fast asleep, I found a gift as I was skimming the morning paper; a bit of help for the day coming from an unlikely source, the Houston Chronicle. Those of you who've met me know I'm somewhat of an introvert and usually prepare on what I'm going to say before standing up to speak; especially "saying grace" on Thanksgiving for the family.  What I saw in the paper was exactly what I needed.  The headline read "Art of Gratitude". It turns out that on the national day of gratitude words don't escape my lips very readily and as I read on it rarely works that way with many people. "Gratitude is a discipline" said Hulitt Gloer, professor at Baylor's Teological Seminary. "It is something that we learn so we are able to practice it in the good times and in the difficult times." 

Reading on to the next headline which read  "In hard times, the key is to think of the little things, and here are some tips from the professionals on expressing gratitude."
  • Think of life's small things: Finding a sense of gratitude in yourself can be as easy as thinking about the air you breathe, the food we eat, the people who brought you this food to eat and the fact that you are alive for another year. 
     
  • Keep it simple: It's not about impressing our audience so there is no need to research the bible or other inspiriational source.  It's perfectly ok to give thanks for the turkey that was cooked just right or that the marshmallow-covered sweet potatoes were not burned this year.  
     
  • Remember people: Here you can express thanks for people who enrich your life, who are absent or worlds away or on each coast and some who are no longer with us.
     
  • Keep it short: With a table full of food before them, the family and grandchildren who may lose concentration on a grandfather's five-page speech.
     
We remain grateful to all who've come forward to support and share information with your ProtonPals. This is the way you give in our "little den" or change room at the Proton Center, in the social hours in the lobby, at the Wednesday dinners at the days end, and in the financial contributions that you've made to support the web site and brochure publications; and not the least for sharing your story. Not hardly a week goes by where I don't get a call from someone who'd like to know more about the center, get more information about the treatment or information they need in their recovery.

In Gratitude,
Joe Landry, Ban Capron and Peter Taaffe
ProtonPals
November 30, 2010

NOTE: The "Feedom from Want" is one of four pieces painted in 1943 by Norman Rockell and is in the Norman Rockwell Museum in Stockbridge, MA.  I saw the set in 2006 and this little clip does not do justice since it is an oil on canvas and is 4 feet by 3 feet. The other three paintings are "Freedom From Fear", "Freedom of Speech" and "Freedom of Worship."
Four Freedoms
In This Issue
A Fork in the Road
20th Anniversary for Loma Linda CA.
A Fine Prostate Cancer Support Organization
A Personal Odyssey
Notes from a ProtonPal's Journey
A Recent Side Trip in My Journey

I've probably preached the following in this newsletter so much you know it by heart. "There's no free lunch" - or "You pack your own parachute" when you decide on this treatment. But more importantly I wanted to write to say that although the proton therapy treatment is not painful (and only uncomfortable as the nurse that was catheterizing me said), there will be some side effects experienced by some patients. While this only happens to a low percentage of patients, there are some serious side effects. Recently I've written that I've been impacted medically and that is the reason why you've seen less action in my part of the ProtonPal organization. One of you wrote to me to say I should let the membership know what was ailing me and now that I have some definitive results I thought I write about to help others.

For several years my complaint was always in the urinary area even before proton treatment. It's my involvement with a urologist that led to early diagnosis. Now it's almost four years since I've finished my treatments and due to radiation or age (75), it's become a more serious complaint. I've spent the last 2 months with doctors visits, medical therapy and diagnostic procedures. I won't impose on you with all the details in an open letter but will respond if you contact me.

It turns out that after the last test called "a urodynamics test", I learned that I have "urge incontinence" and it manifests itself as follows - "when I get the inkling of an urge, I had better find the nearest McDonald's bathroom or bush." This is relatively easy in Southeast Texas and no problem at all in France*, but here in the good ole USA being seen urinating in public could get you ticketed for exposure. It turns out this issue was with me to a lesser degree when I started proton therapy radiation in early 2007 almost 4 years ago. In hindsight it is one the lessons learned and I could have had it taken care of by a local surgeon.

Bottom Line:
  • I found a the best urologist in Houston and his name is Dr. Ricardo Gonzales one of the principals at the Houston Metro Urology Center. Several of the Pals in our membership have had their "issues" handled by Dr. Gonzales with it was surgery before they received radiation. Surgery after radiation could make things worse and the outcome is not all certain.
     
  • If you have an enlarged prostate or BPH (benign prostatic hypertrophy), when diagnosed, I'd strongly urge you to seek counsel with your oncologist to see if a procedure, like the Laserlight TURP, is in order. This has worked wonders with several ProtonPals, two that I know personally. In fact one thought he was "cured" after that Laserlight treatment.

  • The wonders of innovative medicine are at work delivering help in this common area. Common in that you see countless commercials about overactive bladder and your plumbing cartoon in bronze. Two medicines that are favored by this top urologist are Alergan's Sanctura XR and Novartis' Enablex. I have two months experience with Sanctura and the effect was almost immediate. Like all good things it has side effects that you'll have to manage. 
     
  • Surgery was not recommended for me by the urologist nor by Dr. Lee and for now it's medical therapy.  
     
Please give a call if you need more information and be sure to consult with Dr. Lee before self referring yourself to Dr. Gonzalez.

* In Paris with it's lack of public facilities and few McDonalds any corner represents an opportunity - like against the wall at medieval churches.  
Loma Linda and the BrotherHood of the Balloons
20th Anniversary Salute to the Dr. James Slater

More than 600 friends of the The James Slater Proton Treatment Center in Loma Linda came together for an anniversary salute. It's been 20 years of proton therapy treatments and many happy patients.

A friend to all of us, Bob (ProtonBob) Marckini, was recognized at this anniversary salute and given an award for all his work and generosity. Bob, representing the 5000 BOB members from all over the world along with friends of the center presented a check for $500,000 to the PTRC. 

If you're not already a member of BOB and receiving the newsletter you can access it here on the BOB site or on ProtonPals. BOB Tales

Prostate Cancer Research Institute
PCRI Insights for November
PCRI is a Los Angeles based organization who's mission is to improve the quality of men's lives by supporting research and disseminating information that educates and empowers patients, families and the medical community. They hold annual conferences, host a web site, raise money and publish a very good quarterly magazine. November's issue has the following key articles by experts in their field that I'm sure you'll find very interesting. The PDF version of the periodical is available here  Insights for November
  • Understanding risk assessment for prostate cancer by the author of a risk assessment scoring method called CAPRA.
  • How MRI is use in diagnosing and treating prostate cancer
  • How biopsies can be targeted while in active surveillance 
     
  • A long article about TIP or testosterone inactivating pharmaceuticals. 
The magazine has the same look and feel of the ones published by the Life Extension Foundation (nutrition,health and wellness AND supplements). They support PCRI publication with a substantial grant. You can subscribe to Insights free of charge by contacting PCRI at 310-743-2116.

A Personal Odyssey - Part 6 of 8
Experiences at the Proton Therapy Center and Houston

 

Alfred tapped the gong lightly at his graduation on Monday.  Mike banged it loudly on Friday the week before.  Alfred and Mike are like left and right brackets that mark the diversity of fellow patients that come and go each day through the "gown room."  Alfred is the genteel southerner from Tennessee - retired phone man.  He grins widely and speaks softly.  Mike is the gregarious northerner from upstate New York -- finance and insurance maven, also retired.  He has a sharp sense of humor.  (He needles the radiation technician as she readies insertion of the balloon: "I need to tell you something," he says.  "What," she asks?  "Come closer," he says.  She moves closer.  He whispers: "Don't touch me there unless you love me.")

The technicians take it all in stride and give back as much as they take.  They keep our spirits up.  They declared Friday this week as "Hawaiian Day."  (I asked, why?  Nobody seemed to know.  It was just fun, that's all.)  The Center was festively decorated.  Men wore Hawaiian shirts; women grass skirts.  We were given leis and refreshments. Treatments are being completed on schedule.  We're not backed up.  It's a good day.

As we wait our turn, we of the gown get to know one another a little better.  Bill from Houston runs a printing business; Rodger is a retired DNR forester from Iowa; Tom is a Texas high school biology teacher; Bob from Colorado is an energy consultant; Sid, oil and gas engineer on rotation from Dubai (his next assignment to Algeria has been postponed); Ned, Houston attorney; Ray, a retired petroleum instrument engineer expatriated years ago from Massachusetts to the N. Padre Island boating community, ("The best place the world to live," he says); Joe: retired electrical contractor from Pennsylvania; Jim: former Texas congressman, nee Washington lobbyist  (http://en.wikipedia.org/wiki/Jim_Chapman).  Here, we're simply prostate cancer patients with different life stories.

The wife and I bump into Jim at the apartment house later that day on our way to the community room.  Jim joins us for coffee and conversation.  We get the insider's view of Washington politics.  His career as a politician ended some years ago in a run off for the Senate ("Voters reserve the right to be wrong," he observes wryly).  He laments the extreme partisanship now prevalent in Washington.  In his days in government, there was more friendship and cooperation between Republicans and Democrats.  Now, he says, they won't even step into each other's office.  He traces the beginning to the political lines drawn in the election of 1994 (http://en.wikipedia.org/wiki/Contract_with_America).  (Disclaimer:  I take no sides and merely report Jim's personal opinion.)

There's an informal dinner planned by patients of the Proton Center for the evening at the "Saltgrass Steak House" (highly recommended).  We had not planned to go, but Jim offers us a ride and we accept.  We arrive late.  There are approximately forty others already seated -- husbands, wives, others -- mostly gray haired grizzlies, like us  - it looks like senior's night out.   

We're seated next to Dan, a prostate patient, and his wife from Dallas.  Dan works for an investment company that buys pre-packaged mortgages at auction from banks and the FDIC.  The market for distressed mortgages is firming up, he says.  Across the table is another gentleman and companion from Georgia.  He's receiving proton treatment for esophageal cancer.  Following dinner, there's a round robin of personal introductions.  Most are from Texas.  One couple is from southern Illinois.  Talk centers on the stage of our treatment, the reason for our choice of proton therapy at MD Anderson, and our hopes for a successful outcome.  There's much congeniality.  Once strangers from distant places, we are now friends seated in common bond.

This week marks the halfway point to the finish.  The success of my treatment won't be known for sometime thereafter.  Blood samples will be taken periodically over months and years to track my PSA.  As long as it remains stable within a low range, it can be assumed that the cancer has been contained. 

I remain optimistically hopeful . . .

Happy Valentine's Day everyone.

(was written in early 2010 by a Pal.)


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.
If you're a new subscriber you may not notice that we've contracted with the email service to archive our newsletters back to May 2009. 

ProtonPals is a group 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" 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

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