JWT - Volume XXI
Joe’s Wolfpack Trailblazers
January 2022
A new year and a new you. Right? That's not always the truth for a cancer patient. Your life doesn't always revolve around those new year's resolutions that you are supposed to make each year. Most patients just hope to survive to the next year and that they can get that one more ride around the sun. A Cancer patient may find their time is marked throughout the year by multiple surgeries, the number of chemotherapy infusions they are going to endure, those follow up appointments, counting the number of pills taken daily, the tattoo marks from radiation, and the number of physical scars that are present on their bodies. I won't even mention the amount of emotional baggage they collect along the way.
When I was diagnosed with Stage 3b colorectal cancer at age 50 it was like my life stopped and everything moved in slow motion. I could not get from point A to point B without dragging cancer with me. In so many ways cancer can tie you down as a patient or as a survivor and it just becomes those episodes of your life that cancer has brought with it. You have 'The Before' cancer phase and 'The After' cancer phase for those of us that live within the cancer space. For many cancer patients in treatment you feel like you are suddenly stuck in the purgatory of the treatment you endure with no end in sight. I think it's the PTSD of cancer that we all come to know as patients and survivors.
I'm excited to share that I continue this new year as a three year survivor of cancer and I have graduated to yearly scans. I get more space between myself and that haunting CT machine to see if my cancer has returned. I am growing to be able to accept 'the Afterlife' of cancer. I will continue my quest by saying 'Cancer might be done with me but I'm not done with cancer.' It has become the mantra of my life as I look for ways to be an advocate in the cancer community.
In this month's 'Trailblazer' I get to share the cancer journey of our member Freddie Amos. Freddie is not only a survivor of Stage IV Colorectal Cancer but was recently diagnosed with Male Breast Cancer. The greatest thing about The Howling Place group is that we are a support group for men with all forms of cancer. Because Freddie was a member of the group when he found out he had breast cancer, he was able to get instant support from guys in the group with the samwe diagnosis.
We will get an update from 'Mr. Mohawk Mission' himself, Tracy Morgan, and his new mission to advocate for men with prostate cancer.
And last but not least we will hear from one of our newest members Gregory Brown, and “The Life's Bump" that his Stage II prostate cancer diagnosis has brought to his life. I am grateful for these brothers of the group for allowing me to share their survivorship stories. I look forward to sharing more this year.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
Freddie Amos
Freddie Amos
Yates Center, Kansas
Stage IV colorectal cancer and stage II breast cancer
My name is Freddie Amos and this is my cancer story. I was 49 at the time. I had went several days of not feeling well with loose stools. On January 8, 2008, I took my youngest son to the hospital for a note for him to return to school. Our family doctor was working in the ER that evening. He checked him out and gave him a note. Then he asked me what was wrong with me. I asked him why, and he said because I had no color in my face or my eyes were yellow. He drew eight tubes of blood. Then 18 minutes later I was told he had ordered an ambulance to take me to Springfield, Missouri, to have emergency surgery.
They thought it was an appendix. They put a scope in me and could not find my appendix. They turned the scope around and shot three pictures of my tumor before it blew up ripping my colon apart. So they had to clean me out because of all the stuff that was dumped out of my colon.
I spent six weeks in the ICU. My doctor told my wife if I lived three days I might make it but he only gave me a 20 percent chance of making it. I made it through that and spent six weeks in a regular hospital room. My doctors came in and informed me that the tumor parts they sent off came back stage 2.
Upon release from the hospital the cancer doctor said he wanted to see me in a month. So one month later I went to his office and I took all the information I had gotten off the computer. He checked me over and said the nurse would be in shortly to tell me about my port. I said port hell for stage II you can take meds for it. He walked out and said he was my doctor. So I left and did not return for three months. I went back to a new doctor who ran tests and scans and he tells me I was cancer free. I continued to get check ups.
Then on my birthday June 11, 2010, I received a call telling me that I now had stage IV colon cancer and I needed to have a port put in and start chemo in two days. I started chemo which lasted over two years then I got a break from chemo for 27 months.Then I started chemo again for 15 months. Now I've been cancer free for six years.
Then in April 2021 I started bleeding out of my left nipple. I had to have a test, scans done and mammogram. After all that they decided to do surgery on me for breast cancer. So in May 2021 they did surgery on me removing my left breast. So after months of healing I had another problem come up. The day after Thanksgiving I started draining out of my scar. Then two days later I had a knot as big as a football and it was draining. So they did emergency surgery and I spent two weeks in the hospital. Just got out a little over a week ago. I'm 64 years old and hope it can only be the end of cancer.
I'm asking all my brothers in the group and all men out there PLEASE get yourself checked. And if you have problems that you’re not sure about just please have them checked out by a doctor. May all of you have a wonderful 2022. And may God Bless you all.
Tracy Morgan
Tracy Morgan
Grand Ridge, IL
Metastatic Stage IV Prostate Cancer
Joe has asked me to provide an update on my journey. I believe my last writing left me in the fall of 2020. My PSA started a slow rise in the second half of 2020. I had hit bottom in June at 0.01! I was approved to go on Provenge immunotherapy treatment in the fall and completed it in November and December. This boosted my own immune cells to help fight the cancer.
In December my PSA went up about 2.5 times in one month and then more than tripled in January. Now that rise is not good but I was still only at 3.25 in January but looking at double digits in another month. My team had already planned on this and was ready to switch my oral med which we did in February to Xtandi and in less than three weeks I was back down to 0.35.
That lasted about four months and it started rising again. This time I needed radiation to a tumor on my upper spine which again dropped it back down and has continued to drop for three consecutive labs. That brings me to where I am now at 0.2. It looks like I am back stable, this is great news when you have incurable cancer. So things on the cancer front are as good as they can be for me for now.
On the other hand my wife found out she had a tumor on her left kidney a few months back. They said it was an 80% chance it was cancer. We looked around at where to go and decided to go to the same Urology practice I use and see their surgeon who does robotic surgery. This was one of the greatest consults I have ever been in. He spent nearly an hour with us and went through all of the possible treatments and their pros and cons. Thankfully this was caught early and was considered small at around one inch in size. He is an acclaimed robotic surgery and was taught the procedure my wife needed by the doctor that developed it.
She went through surgery great and is recovering well. The pathology report found the tumor to be cancerous but also that the doctor had good margins on it and was able to remove all of it. No further treatments are needed but she will need to have scans for the next ten years. We never thought that both of us would have to face cancer.
Enough about cancer let me fill you in on the fun things that have occurred. My fundraising team with my persuasion decided to hold a cow chip throwing contest at our town’s festival days back in August as a fundraiser. Yes, you read that write, we threw dried cow crap patties to see who could throw the farthest. Now you must know that I live in a town of six hundred surrounded by corn and bean fields and farms with cattle and hogs. So this was the perfect fundraiser for a bunch of rednecks and hillbillies.
We also had a booth downtown amongst the vendors to provide awareness about prostate cancer. This took a lot of help and I was blessed to have five people that I had never met in person before but had become friends with on Facebook to show up to help. When I say show up, they came from Ohio, Texas and Florida. We had a great time!
I have fought depression for more than a year due to several things besides just dealing with my cancer. I had some rough times in 2020. I’m not afraid to say I see a counselor, she has helped me a lot and still has more work to do. I am trying to put some of those things behind going into the new year. One of the biggest things helping me do that is getting back working on my Mohawk Mission. I did some work on it early in the year but didn’t keep it going. But now I can say it is moving forward at a nice pace.
The mission consists of a website (mohawkmission.com), an Instagram account and Facebook page. The original idea behind this was to use social media to spread awareness about prostate cancer. That is now just part of it. We just recently started a men’s only Facebook group for men affected by prostate cancer, The PC Tribe. It is much the same as Man Up’s The Howling Place group. In six weeks’ time we’re over 130 men.
We just started having zoom meetings and will be doing interviews of the members. We also just put out the mission’s first monthly newsletter which talks about what is going on with the mission and the Tribe. We expect a big first quarter in 2022 with taking the mission non-profit and starting an in-person support group for men and their wives dealing with PCs. We want to serve those affected by PC in our area, it is something the big organizations don’t seem to be able to do. As I said at the end of my first story, not sure where it is going to go but I know I need to do it.
Gregory Brown
Greg Brown
Nanaimo, British Columbia, Canada
Stage II prostate cancer
“Life’s Road Bumps”
Life is not a destination, but a journey. The path is rarely smooth. It is filled with detours, road bumps and beautiful scenery. We will wander through many beautiful places along the way and meet many wonderful people on our journey. Life’s road bumps are just blips along our journey, not road blocks. There may be detours, there may be repairs along the way. Some we can do ourselves, others require the help of others (experts, mechanics, our community, our family). As we progress through life, we will use many roadmaps to get to different destinations. Life’s road bumps change the route, our path, even our destination.
Cancer is another road bump. There are many complexities to cancer. All require some level of support. All require strength – mostly inner strength. Of the many illnesses out there, cancer probably requires some of the greatest level of support. Doctors, medical science, family, friends, community, inner fortitude. The word cancer conjures up tremendous fear and anxiety in almost everyone – those who have been diagnosed and those who have not. For those who have not been diagnosed (that number is becoming less and less – 1 in 2 Canadians will contract some form of cancer in their lifetime!), I’m sure they’ve often thought how they would respond on hearing such a diagnosis or that they are now a Cancer statistic.
I officially became a Cancer statistic on Aug 24, 2021, although my cancer journey started on March 22, 2021 with an elevated PSA reading during my annual physical. It was Aug 24, 2021 when my urologist said – ‘Greg, you have stage 2 prostate cancer’. Everything between March 22 – Aug 24 indicated the possibility of prostate cancer, so it was something I was preparing for. Elevated PSA testing, MRI, CT Scan, Bone Scan and finally a Biopsy. I did not experience or exhibit any symptoms of prostate cancer. I am the first one in all my family lineage to have been diagnosed with any form of cancer. A first I prefer not to have the honour of. A ‘club’ I prefer not to have joined.
Until we are faced with adversity – life’s road bumps (death, divorce, job loss, sickness, etc), we never know how we will respond. There are many levels of adversity as well. Over time, I’ve had to face/deal with a few – Job loss, divorce, death of parents and sickness. Each of life’s road bumps had its own unique challenges. Each had its own emotional and physical challenge and took different lengths of time to overcome. Each road bump required a different set of supports to overcome.
One thing I did learn - the biggest hurdle of all to overcome, regardless of which road bump , was the mental and emotional challenge/struggle. There are different levels of pain and grief attached to all of life’s road bumps. We need to draw on our past experiences, our internal fortitude and the help of others around us (family, friends, neighbors, associates, etc) to overcome the pain and grief associated with each set of challenges. Everyone’s response and repair kit will be different.
As I first started to come to grips with the possibility of having prostate cancer, my wife took the possibility the hardest. I wasn’t discounting the likelihood I had prostate cancer. I tend to live in the moment. We can’t change the past, and we can’t control the future – We can only deal with and control the present – is one of my philosophies. I also prefer to deal and respond to situations as they occur and the facts and not worry about the infinite possibilities of the future.
My wife on the other hand had lost her mom at a young age to cancer so had witnessed some of the devastating effects of cancer first hand. While we can try to imagine how we will deal with situations, until placed in that reality, no one can fully understand or appreciate how they will react.
I wasn’t in denial. I prefer to trust the medical experts. I was waiting for an official diagnosis to fully understand the gravity of my situation and the options available to me. Having stage 2 prostate cancer meant I required some level of intervention (versus stage 1 which usually requires active/ongoing surveillance). On the plus side – all my medical experts said I was ‘young’. On the plus side, given my diagnosis was caught early, I had options that had long term positive outcomes.
My choices were either surgery or Brachytherapy (targeted low dose internal radiation). From Aug 24 – early Oct, I consulted with my urologist, and oncologist to understand the pros and cons and side effects of the different treatments. I found myself oscillating from one day to the next as to which treatment I preferred. Finally in early October, I opted for the Brachytherapy radiation treatment. It was a relief to have finalized a decision and begin moving forward with concrete remedies – fixing my flat.
To overcome any of life’s road bumps, we need help. Drawing on our toolkit of family, friends, community will help overcome the challenge and ensuring long term success. I am fortunate to have a wonderfully supportive wife. You might even say her level of concern is greater than mine. I’m not minimizing the challenge, just placing faith and confidence in the outstanding medical team and science that’s there to support me. I also have tremendous family support from my siblings and children who are scattered across North America and Australia. Dealing with a major ankle injury 4 years ago, wherein I had 2 major surgeries, was on disability for 7 months and almost had my right foot amputated helped me prepare for some of the mental and medical challenges I would be facing.
My mission, as I travel down my prostate cancer treatment and recovery is to promote the importance of regular check ups and create awareness (particularly in the male community who tend to minimize their health concerns) amongst my family, friends and community so others can be fortunate like I in having an early diagnosis resulting in more treatment options and greater long term positive outcomes. I can’t cure cancer, but if I can help create awareness in others to improve their success in overcoming this insidious disease, then my goal is accomplished.
I’ve been open via my social media posts about my diagnosis and treatment. I’ve been open in conversations with neighbors, friends and clients. I’ve joined different support groups to help others, as well as help me better understand options and provide outlets when I’m feeling overwhelmed. As we face road bumps and adversity, we need to be aware of our vulnerabilities, which impact our cognitive abilities to make sound decisions and choices. In doing so, I’ve been pleasantly surprised on a few fronts.
I’ve had friends/acquaintances come forward saying they or their spouse had prostate cancer and offering medical and emotional support. I’ve had friends, associates, acquaintances inquire about my situation and take up my challenge to get checked out (mission accomplished). Even just small periodic ‘Hey Greg, how are you doing?’ check ins go a long way to letting you know you’re not alone in the journey. Small tokens can make such a big difference (especially if having a ‘down’ day).
As we face road bumps and the corresponding adversity and open ourselves up, I find people respond one of 2 ways. There’s those who want to and offer to help you. There are those who are fearful/uncertain how to react/respond to your circumstances, so shy away from discussing your situation or offering support (not because they don’t want to, but because they don’t know how to).
It’s been 2 weeks now since hundreds of small radiation seeds were implanted into my prostate. They will release low doses of radiation over the next 3 – 6 months to rid my body of this terrible disease called cancer. I count my blessings with all the experts and support I have around me. Strangely, one of the thoughts that continues to creep into my mind, is why am I so lucky? Why do I not have to have intrusive chemo and radiation with huge side effects?
The other thought/fear that is constant and I think this applies to many/most cancer victims is – Will it come back? Will it come back somewhere else? Only time will tell. I will continue to have faith in the medical professionals, in my early diagnosis, in my family and tremendous support network.
If nothing else (there are silver linings in every situation), Cancer has also caused me to pause and reflect on what I truly value. What’s of true importance. How do I want to make an impact going forward. What’s my next destination on this journey of life?