Content Categorized as Archived Posts or ''

Tai Ly has recovered and back at the Proton Therapy Center

Dear Joe, and Bob,

Please send the below email to my men, and hope thing is going well to both of you.  Hope to see you all soon.  Thanks

Hi My Dear Roosters (and their significant others),Just to let you all know that I have been back to PTC since yesterday, feeling very good, and glad to see some of my patients and talk to them.I did have right mastectomy with 4 lymph nodes removed on September 4, 2007.   After 2 days in the hospital, my husband and I moved in with our daughter in her town home which she shares with another room-mate, it was fairly comfortable and convenient.  We are now looking for some place to rent or buy for the time being since we already sold our house here in Houston.  We plan to stay here and I will continue to work at PTC at least for 6 months to a year while the Plastic Surgeon working on my reconstruction.  It was  great news for me that my tumors are small <0.8cm so I don’t have to go through chemotherapy or radiation, but I have to take Arimidex, an anti-estrogen drug, for at least 5 years.

I would like to take this opportunity to thank all of you for your cards, gifts, flowers, telephone calls, and e-mails.  Your care, concern, love, support, and especially prayers have meant so much to me.  It helped me to go into the surgery room without fear, being scared, and frighten at all.  I felt like all of you were there with me at that time.  If I counted, I would have about over hundred churches and thousands people praying for me.  I felt so good  to be loved, which I never expected.  Thank you also for all of your nice comments about me.  I have been so flattered with all of those nice thoughts.  If I offended any of you over my intention to get you into the proton program, I would like to apologize to you as well.

Please keep our chain of communication going among our group, keep each other in the loop of news.  I will try to gather the emails addresses from  men previously in our program and forward them to you so we can add them in our list.

So, I will be here for awhile,  please come by to PTC to see me when you come back for check up.  I will let you all know how my disease progresses as it goes along, and you all need to do the same.

Buddy Zeagler, please stop crying and behave!!!!.  Did you hear from Frank Perez?

From bottom of my heart, thank you again!

Best Regards,

Tai Ly RN, MSN, ANP-C
GU Proton Therapy Center
1840 Old Spanish Trail
Houston, Tx. 77054
Office:  713-563-9398
Fax:  713-792-1127
Pager:  713-606-3704

Testimonial by Buddy Zeagler

Well, I am just devastated with the news about Tai. My PTC experience under her compassionate and loving care is a mirror image of Bob Jernigan’s. She is the “poster child” for the definition of a guardian angel.For me, my serendipitous encounter with Tai was just one in a series of “minor miracles” that, if they hadn’t occurred, and occurred in the exact order in which they did, I not only would not have entered the doors of MDAPTC, but also, in all likelihood, would not have been chosen for treatment. My first epiphany occurred in September, 2006, with a phone call to my office from my wife, informing me that she had taken it upon herself to schedule my long overdue annual physical. PSA results indicated a third year increase, although the score was slightly below the magic “4.0.” My internist recommended a biopsy, and offered to refer me to an “excellent” urologist/surgeon in Houston. I discussed my condition with my “lunch bunch,” receiving “pro” and “con” feedback. I remember one friend’s warning, “If you do have a biopsy, and it’s positive for cancer; and if the urologist advocates surgery as the only solution; get up and walk out of his office!”So, I took my internist’s advice, and called the Houston doctor, but was told he was not in my insurance carrier’s network—another minor miracle. I thought seriously about blowing the whole thing off. Julie and I had a long weekend planned with friends in Galveston in October. I have several contacts at UTMB, and Julie suggested that, while in Galveston, I should try to schedule a biopsy on the last day of our trip. I agreed, and my biopsy was performed on October 12th. Four days later, the UTMB urologist called, broke the news, and introduced me to my new “indicator”—the Gleason Sum. He said my next step should be a bone and CT scan. So I had them done the next day in Lufkin, indicating the tumor was still confined to my prostate. In each case, neither the UTMB urologist nor the radiation oncologist here in Lufkin pressed me to choose any one treatment. They each provided me with written materials, and assured me I had the choice of several treatment options—another minor miracle.Over the next two days I read everything I could acquire about prostate cancer, and talked to friends who were survivors. The evening of October 20th, Julie and I were invited by our best couple friends’ to have dinner, and meet their couple friends visiting from Chicago. I was in no mood to socialize, and asked Julie to decline. At the last minute, I said, “what the hell, I need some comic relief,” and we decided to go (another miracle). Over dinner the subject of my situation finally came up, and I outlined what I believed to be my treatment options. Then another minor miracle occurred—the male guest from Chicago asked if I had considered proton therapy. I told him I’d never heard of it. He suggested I talk to a friend of his from Dallas, who had been through PT at Loma Linda. I said I would be happy to, figuring he would forget to give me his friend’s name and number, and I would more than likely not bother to make the call. The very next evening my new “Chicago friend” called, and said his buddy from Dallas was at his home waiting to talk to me. I gave him a ring, talked to him for about an hour, and when I hung up the phone, I was convinced it was “meant” for me to pursue proton therapy.I contacted MDAPTC to get the ball rolling, and was troubled by what I was told. My Gleason Sum was pushing the treatment envelope, and it might be several months before an appointment could be scheduled. Disheartened and frantic, I called a friend, and former member of the UT board of regents. She 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.On February 14th, I drove to Houston for my first treatment. As I sat in the patient’s lounge, holding my bottle of water, I was approached by another patient—Frank Perez. I told him this was my first day, and he said, “Get up and come with me.” He took me back to the dressing room, and covered the preparation “drill” for treatment. After his session, he waited for me to finish mine, and I thanked him from the bottom of my heart for his help. He said, “No thanks needed, just promise me you will pay it forward to the next new guy.” And I did—to Richard the “Ragin’ Cajun” from Louisiana.Throughout my journey there were “miracles” and “random” acts of kindness that shaped its course. The “if” scenarios are too numerous to mention in this passage, but IF Julie hadn’t scheduled my annual physical, IF I hadn’t had the biopsy, IF the Houston urologist had been in my insurance network, IF I hadn’t gone to dinner with friends, IF I hadn’t talked to the guy in Dallas, IF there hadn’t been PT at MDA, IF I hadn’t had a UT regent for a friend, 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 “Devine” 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?’ ”

Thus endeth the reading of the lesson,

Buddy Zeagler

#696599

Summary of First PTC PC Support Group Meeting

On July 25, Sloane Caskey and Allana Ferguson, social workers from MD Anderson, held the first meeting in one of the conference rooms at the Proton Center.  The educational aspect of the meeting was “Proton Therapy - What am I going to do for two months”. These meetings will be ongoing and held the 4th Wed of every month.  It is the start of a support group, so patients who have completed treatment are invited to attend the future meetings. 

At the meeting the topic of post treatment PSA measurements came up and I’ve attached a chart from Proton Bob’s book.  This is a thumbnail, click to see full size.   PSA after Treatment  To get the book

Hope you can pull it up and read it.  From my talks with Dr. Lee,  I was expecting the lowest low or nadir of  PSA reading as a result of the treatment to occur around 1 1/2 years on average but Dr. Rossi at Loma Linda uses 2-3 years on average as a guideline. If Proton Bob’s chart is a representative example you can see that the PSA will not drop in a straight line but will reach a low point in that time frame.   I have some early results from a few of us who’ve checked back in.  The numbers for those of us who haven’t had the (anti) hormone treatment had PSAs reduced by 1/2 to 1/4 after 3 months.  My PSA went from 4.2 to 1.1!  Another friend’s reading went from 8.2 to 2.4 in the same 3 month period.

The guys who’d had hormone treatments were at the very low end of the scale with one guy reporting around 0.1.  So the bottom line

is each guy is different and will respond to the treatments somewhat differently.  So in managing my expectations,  Dr. Lee said in the first 3 months to expect the numbers to be about the same when you started and to not be disappointed if your numbers don’t drop by the same amount as some one else’s.

Another bit of news was the change in protocol (I think that’s the correct term) relative to the number of treatments.  As a layman and speaking unofficially it appears the number of treatments have been reduced from 42 to 38 according to the new patients attending the meeting.  One of the patients told us that the total amount of proton radiation will be kept constant for his 8 weeks of treatment but they will be spread over 38 days instead of 42.  In other words more Grays per day.   Each patient’s treatment is customized by the specialists so this will vary from patient to patient.  

Wanted to welcome some new members to the “unofficial” Proton Pals email list.  Sloane Caskey told us that a bulletin board for the proton patient community is being implemented by M.D. Anderson and soon we will be able to use this facility to post messages to each other. 

Another item that I pointed out during the meeting is the tour of the Proton Center.  I think everyone should take a tour, before treatment or during the first weeks;  and as a group we may have to ask M.D. Anderson if they will consider increasing the number of tours per month to accommodate all the new patients and prospective patients.  It’s very educational and you’ll learn the difference between the fixed beam bay and the gantry bays.  By the way it was a few weeks before I stumbled on the model of the center on the first floor and got a chance to see the layout.  

In gratitude

PalJoe

PS:  For the sake of privacy, I’ve suppressed the distribution address list with the exception of my address, along with Sloane’s and Allana’s. If you’d like to distribute a note or report on your experiences please let me know and I’ll forward it, or <you can reply to all > and your note should go out to everyone.  The names and addresses list has grown from just a few to about 70. I’ve been a remiss about not picking up the sign in sheets in the dressing rooms, but planning to pick up new member names every 4th Wed of the month. 

Prostate Surgery

If you are considering radical prostatectomy, an operation to remove the prostate gland, here’s a direct link to a section at WebMD.  Complete, well written but with some sobering statistics about ED and incontinence.

Patient Proton by Dr. Roy Butler

The Patient Proton   Here’s an excellent 24 page report by Dr. Roy Butler, a chemistry professor from Norwich University and a prostate cancer survivor that is featured on the ProtonBob website.  ProtonBob is Bob Marckini’s web site and Dr. Roy Butler is a well known cancer survivor treated at Loma Linda University Medical Center.  ProtonBob is an essential web site that most if not all of the ProtonPals have used in obtaining information about prostate cancer treatment with proton therapy.  Thanks to Bob and Dr. Roy for making the site and booklet available. 

Tai Ly Recovering

On Monday September 17th, I got the good news that Tai Ly will not have to undergo chemotherapy or radiation.  She’s well on her way to recovery and will be replying to our emails when she’s better.  Maybe we can get this blog to where it’s usuable before she gets going again.

Support Group Meeting for September

Proton Therapy Prostate Patient Group On the 4th Wednesday of the month, the Radiation Oncology Social Workers hold an educational meeting for patients considering or undergoing proton therapy for Prostate Cancer and their caregivers.  For September the topic is one requested by previous groups and will be about hormone therapy side effects and sexual issues related to the radiation therapy.  The link above leads you to a flyer

PalJoe  

This was my experience

I started down this journey when I was diagnosed in November 2006 by a principal Baylor urologist with a recommendation for radical prostatectomy via the Da Vinci robotic surgery.  I was going to schedule this operation in early 2007. In  December at a local fitness center, I met Mike a fellow engineer who I had not seen in 10 years. While catching up, I found out Mike was a prostate cancer survivor and had been treated with Proton Therapy at Loma Linda University. 

Over the Christmas holidays I got an appointment for a consult with the M.D. Anderson Proton Therapy Center in Houston.  Since it was Christmas it took some doing, including using a patient advocate. A very valuable resource. The called from came while attending a Christmas luncheon.  What a gift!

In gratitude

Joe

paljoe