JWT - Volume VI
Joe’s Wolfpack Trailblazers
September 2020
When I was declared cancer-free from stage 3B colorectal cancer in February of 2019, I wasn’t sure what to do with my life. It was a gift I honestly didn’t know how to unwrap.
I started to look at how other men cancer patients and survivors were spending their lives. What I found was a group of men rising above their own struggles, to help others in the fight. Joe’s Wolfpack Trailblazers is a monthly feature that highlights the works of community service by these remarkable men.
In honor of this month being Prostate Cancer Awareness Month, I’m proud to feature the works of Tracy Morgan, David R. Patton, and Russ Smith. I share a personal story about my dad's struggle with prostate cancer. His struggle clearly impacted my own cancer journey.
Also, if you haven’t listened to my interview with Trevor Maxwell on the Man Up to Cancer Podcast, I hope you check it out. I’m honored to be the first guest!
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
Click here to jump to Volume I
Click here to jump to Volume II
Click here to jump to Volume III
Click here to jump to Volume IV
Click here to jump to Volume V
Tracy Morgan
TRACY MORGAN
GRAND RIDGE, ILLINOIS
STAGE 4 PROSTATE CANCER
MOHAWK MISSION and MAN UP TO CANCER
I was diagnosed in May 2019 with metastatic stage four prostate cancer. Mine was metastasized to my bones from my neck, ribs, lower back, pelvic area, left hip and right femur. At the time I was having severe lower back pain for about six weeks. I had gone through physical therapy which did not help and finally was sent for an MRI on a Friday morning. That afternoon I was called by the radiologist and told I had an abnormality on my MRI and needed to come to the ER as soon as possible.
Once there, we were given the bad news that I had prostate cancer that had spread to my bones. After that my mind was going 600mph and I convinced myself I had five to six months to live. After all, the three words I heard were cancer, spread, and bones. That weekend sucked!
The following week was fast and furious. I was sent to a large urology center that also has a prostate cancer center on Tuesday. Met my urologist and radiation oncologist who confirmed my diagnosis. Thursday had my biopsy and Friday I started radiation on my back. I found out my PSA was 294, it should be less than 4. I received ten days of radiation on my back which completely took away my pain. I also started my medical regimen of ADT (hormonal therapy). I receive a shot in my belly every four weeks of Firmagon and take two Zytiga pills every day. These two drugs take my testosterone away, which is what prostate cancer feeds on. I’m on my way. The rest of 2019 was just much of the same. The hardest part was dealing with the side effects. Fatigue, hot flashes, and mood changes were the biggest. In October I had 20 days of radiation on my prostate. This was worse than the back radiation with several side effects.
During this time I decided I needed a goal that would be hard to achieve, figuring if I could reach this goal that I will be able to get through whatever I will face in the future with this disease. That goal was to run the 5K at the Chicago ZERO run/walk on May 30th of 2020. I’ve never been a runner and never liked running. I started training in December and it took me six months to be able to do this. I did run a 5K on May 30th despite all of the ZERO run/walks going virtual this year.
So far this doesn’t sound too bad, but the reality of the stage of cancer I’m in is that it is incurable. I will never get rid of it. And I only have a 30% chance of living for five years. The ADT treatment has been successful as my PSA is at 0.02 at present. The big question is how long. This cancer right now is far more mental than physical. As I look back I was the perfect storm for this diagnosis. I’ve never liked going to the doctor, always said nothing is wrong with me. I knew nothing about prostate cancer or PSA, never had a PSA test.
Since my diagnosis, I’ve become more and more open about my cancer and more and more determined that I will prevent as many men as possible from ending up with my diagnosis and my odds. At present I am forming the Mohawk Mission with one goal: to get men checked for prostate cancer. Why Mohawk? As you can see from my picture I have a Mohawk which was given to me by my daughters on a fundraising challenge. We are passionate about fundraising for ZEROCancer.org and this year have raised over $16,000. Back to the mission, I want to use social media to get this word out and once COVID is over I will be talking with groups about this also. Not sure where it’s going to go but know I need to do it.
David R. Patton
DAVID R. PATTON
MILLERSTOWN, PENNSYLVANIA
PROSTATE HEALTH ADVOCATE
When Joe Bullock asked me if I would write an article for the September newsletter on my story of being a men's prostate cancer advocate and why it is important to me, my first thought was WHY ME?!! I have never been diagnosed with prostate cancer. There must be men in the Howling Place with better stories than mine. He assured me that my perspective needed to be shared.
My journey began in July 1995. My mother was working as a registered nurse in our local doctor's office. She came home one day and laid a card for a urologist in Camp Hill, Pennsylvania on the kitchen counter and said, "I want you to call and make an appointment with him. You are 45 years old and you need to get checked."
Of course, I had a long list of excuses. The biggest excuse being, he's not doing that with a rubber on his hand to me!!! I finally caved in and scheduled my first appointment. That was 25 years ago and thus began my journey as a men's prostate cancer advocate.
My urologist, Dr. R. Scott Owens, has been my urologist since that first visit. I just asked him at my June visit if I was his oldest patient. He said that I was probably one of his first. He is so open and honest and very willing to answer any and all of my questions. I usually go to each visit with a list of 10 or 15 questions. Dr. Owens has been nominated for a ZERO: The End of Prostate Cancer Blue Ribbon Award at the 2020 ZERO Summit in Washington, D.C. Dr. Owens' office, Urology of Central Pennsylvania, always sponsors the ZERO: The End of Prostate Cancer Run/Walk every September in Harrisburg, Pennsylvania. Last year, in September 2019, Urology of Central Pennsylvania passed the one million dollar mark in money raised for ZERO. I am so very proud of that accomplishment.
Over the years, I have learned the importance of early detection and treatment for prostate cancer results in better outcomes. Men aged 45 should schedule their yearly PSA blood test and digital rectal exam (DRE). If you are an African American man or have a family history of prostate cancer you should be checked earlier than age 45.
I have had prostate biopsies in 2014 and in 2019. Luckily they both came back negative for cancer. My 2019 biopsy was an MRI Guided Saturation Biopsy with 24 samples taken. Anyone who hears those words, you need a prostate biopsy, please message me so we can talk. I am always willing to talk with anyone about prostate cancer and listen to your concerns. If any of you live in Pennsylvania and need a urologist for any reason, contact me. I absolutely know the name of the best one in central Pennsylvania.
One of the biggest concerns men have when they hear those words, "You have prostate cancer!" is whether they should have surgery or do some type of radiation or chemotherapy. We all know the side effects that come with surgery, radiation or chemotherapy, like erectile dysfunction (ED) or incontinence. I feel that when you hear that diagnosis the first thing you should do is learn all you can about prostate cancer and the treatment options.
There are two excellent books that are a must have. The first is considered the "Bible" on prostate cancer, "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer." The second book is "100 Questions and Answers About Prostate Cancer" by Pamela Ellsworth, MD, John Heaney, MD and Cliff Gill.
The second thing to do is talk to your urologist and ask him or her all the questions that will be racing through your mind. Make a list of all those questions no matter how silly you might think they might be. Trust me, THEY ARE IMPORTANT TO YOU!!!
After you have decided on your plan of treatment in conjunction with your doctors, know that you, your doctors and God have you in their care!!! The research into prostate cancer and the new tests and procedures on the horizon are so encouraging. The days of getting a PSA blood test, a DRE exam or even a prostate biopsy may soon be a thing of the past. Today we are hearing words like biomarkers, DNA urine tests and virtual biopsies.
September is Men’s Prostate Cancer Awareness Month. If you know a man who is 45 years old and has never scheduled that first prostate exam, please encourage them to make that appointment!! Just like I did 25 years ago. If YOU are that guy, GET IT DONE!!! Man Up!! Get Checked!! Be Proactive!! Know Your Numbers!! Prostate cancer that is caught early has a better than 99% cure rate!!!
I have been a third grade school teacher for 34 years. I have former students in their 40's and 50's. Each year when they turn 45 years old I remind them to schedule that exam. Young men are notorious for not going to the doctor, especially if they feel okay. I feel my job as a men's prostate cancer advocate is to educate and encourage all men to get checked. One of our men's prostate cancer slogans is, "Don't fear the finger! It might save your life!" With the current Covid-19 virus, many men are putting off their yearly exams and visits to their doctors. DEFINITELY NOT A GOOD THING TO DO!!! ZERO: The End of Men's Prostate Cancer is reporting a rise in the number of men being diagnosed with prostate cancer as well as more aggressive cases of prostate cancer.
I hope in some small way, I have given some valuable information about prostate cancer, encouraged someone to go get checked, or offered some hope to anyone struggling with a prostate cancer diagnosis. Remember, KNOWLEDGE IS POWER!!! All best wishes to all the Wolves in the Wolf Pack!!
With Warmest Regards,
Dave
Russ Smith
RUSS SMITH
LONDONDERRY, NEW HAMPSHIRE
STAGE 3 PROSTATE CANCER
MAN UP TO CANCER and working with ANCAN (ANSWER CANCER FOUNDATION)
Russ is a 59-year-young, active cancer patient with stage 3 prostate cancer, and has been battling his cancer diagnosis for just under two years. He had his radical prostatectomy on February 5, 2019, after being diagnosed with 11 or 12 biopsy samples being positive for cancer and a Gleason score of 4+3 = G7.
One year to the date of his surgery he found out his cancer had returned to the prostate bed, and he went through 39 rounds of radiation and six months of hormone therapy this summer. Just this past week he was diagnosed with a 70 percent chance of having a slow growing form of cancer in his right kidney, so he will be on active surveillance for now. Russ is being treated at the Dana Farber Cancer Institute in Boston.
Russ feels the need to give back and help others. He is both a high school football official and baseball umpire. On top of that, Russ helped form the website KillTheCan.org, a peer to peer online support group for quitting chewing tobacco and other forms of nicotine. Russ has been an admin on that site since 2006 and has helped thousands successfully quit and stay off nicotine.
Since being re-diagnosed with cancer in February this year, he became involved with an online support group called AnCan, and is now a co-moderator of Men Speaking Freely on AnCan. This group is an online Go-To-Meeting that occurs once a month (see ancan.org for more information). From there he became involved with Man Up to Cancer and the Howling Place. It was just a natural progression to connect both groups together for the same cause, helping men cope with the path of dealing with cancer on the emotional side of life.
Both of these groups have given Russ great support and advice. Russ says, the huge takeaway is to be educated about your disease and the available options that you have. Always get a second opinion and the biggest lesson learned is to “Be Your Own Advocate!” This is your life to live and the medical teams are working for you. Get involved in these support sites and when the time is right for you, consider paying it forward and take a role in that group to help others.
Russ wants to thank both Man Up To Cancer and AnCan for their support, their brotherhood and the knowledge he has received from them. Russ has been married for 34 years and has three grown up sons. Look for him on both sites and say hello.
“Remember, in this pack no one ever fights alone! Howl to the pack and feel free to vent with us or just have some fun. Foxtrot Oscar Cancer! Howl on and never give up.” - Russ Smith.
Joe Bullock and his dad
JOE BULLOCK
DURHAM, NORTH CAROLINA
STAGE 3B COLORECTAL CANCER
MAN UP TO CANCER
The year 1999 was a pretty awesome year for my family. My wife and I had just built our first home across the street from my parents. We had our first child due in May of that year. I had not had a physical in a couple of years, well ok to be honest five. At the urging of my wife I started to look for a doctor. My health care provider referred me to the same doctor as my dad.
When I went to have my physical, the doctor noticed my dad's name on my paperwork. He asked me if I knew I had a history of prostate cancer in my family. In fact he told me my dad was showing early signs of prostate cancer. Being I was 33 years old at the time I honestly thought I was too young for a prostate exam. My doctor felt differently and thought I should consider getting one that day. No matter how uncomfortable it felt, I am glad I was proactive and had the exam. As we know, the best defense against any form of cancer is early detection. Because of the size of my prostate, my doctor suggested I get a prostate exam every five years till age 50. After that I should get one yearly because of my family history.
I was very frustrated with my dad for refusing to have his prostate cancer treated. He was very stubborn about not allowing the doctors to treat it. I respected his decision for not seeking treatment and it's a decision he would regret at the end of his life. I think sometimes if my dad had a group like 'Man Up To Cancer' he might have been more willing to get treatment.
To be honest, my dad and I didn't get along very well over the years. We had not spoken for a few years before he got sick. As my dad's health began to decline, my sister asked me if I would help her to be his caregiver. She felt it was important for both of us that we mend our relationship before he died. I agreed reluctantly because it was important to her. I prayed to put my feelings about my dad aside to help him die with peace. I learned over time that I also gained the same peace in my life as well.
My dad tried to hide his disease but over time it overtook him. One night on a trip to the bathroom he fell and broke his hip and he once again refused treatment. I think he feared he would not return home. After a few more days of pain and pleading from family, he finally agreed to go to the hospital.
Many men tend to self isolate during a medical diagnosis. I know my dad did exactly that during those last painful months of his life. He didn't even want to talk to the doctors at the hospital. He relied on me to talk to the doctors and agreed to what they thought was best for him. The doctors said his disease had progressed. Because of over medicating with pain medicines for his pain, his organs were deteriorating and repairing his hip was not an option. It was suggested that he go to a local hospice center to make him comfortable and get help for pain. I was proud of my dad because during those last few days of his life he started to reach out to people and ask for more help. I just wish he had been more open to that sooner in his life. He died after 10 days of being at the hospice center.
As I faced my own cancer diagnosis a year later, I thought about my dad alot during those days as I laid in bed recovering from my own cancer surgery. I had the same basic surgery my dad had refused years prior to explore what prostate cancer was doing to his body. I struggled with self isolation myself during recovery and treatment for cancer. I had to start to rely on the people around me for support. It was something I was not in the habit of doing. My dad always told me to look out for number one. I wasn't taught to reach out to others because that was shown to be a sign of weakness.
This year I will turn 53 years old. It is the same age my dad found out he had early onset prostate cancer. I have my yearly prostate exam in a couple of weeks. I have one every year in honor of him. I encourage men 45 and older to have their prostate exams yearly. A few seconds of discomfort could save your life. As we know, the best defense against any form of cancer is early detection.