JWT - Volume XXVI
Joe’s Wolfpack Trailblazers
June 2022
For many men, getting cancer is completely unexpected. All it took was for them to go to a doctor appointment after a period of not feeling well, feeling an unusual lump or mass on their body, a period of unexpected fatigue, blood loss or other side effects. It would generally be that after a full physical exam and a series of tests that they would hear those dreaded three words, 'You have cancer.’ They are left in total dismay and with utter disbelief of the diagnosis left in front of them.
For me, I was just continuing to build the life I had created for my wife and children. I had always heard of other friends or family members being diagnosed with cancer, but had never been impacted by it myself. You just don't expect it to happen to you.
I remember going to the local convenience store when my kids were young and they noticed these paper balloons all over the windows that other kids had colored and put up. They asked if they could get one to color and to put in the window. We bought a couple of them that day and they each put one in the window. I stupidly felt that I had done my part for cancer research, hoping my family would never be impacted by it. A few years later I would be faced with that reality and hear those three words myself.
None of the men of Man Up to Cancer’s Howling Place Group ever expected to become a part of this group. Like most men in the group, they just walk out of the doctor's office one day as a cancer patient. Many men have described being a member of the group as a club none of them wanted to be a part of, but they are glad they joined. We have spent the last couple of years sharing our cancer journeys, supporting one another in the fight, and mourning brothers of the group who have won their battles with cancer along the way. We have done a lot of talking, laughing, and crying in many zoom meeting chats over the last few months. Many members have taken the opportunity to meet in small groups in their local areas. It's become less of a Facebook group and more of a brotherhood in the face of cancer.
In a couple of months we will get the opportunity to meet in person as a Wolfpack and 'Howl together' in celebration of our survivorship from cancer. It will be the first official Man Up To Cancer ‘Gathering of Wolves' event, September 9th-11th at Camp Duffield in Delevan, N.Y. Over the next couple of months this newsletter will feature men who will travel from around the world to join us at this historic event. A special thank you to B.J. Meador, Jason Manuge, Jeff Phillips, and Jason Reiss for contributing to this month's Joe's Wolfpack Trailblazer.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
B.J. Meador
B.J. Meador
St. Paul, Minnesota
A Brother, a friend and a caregiver to the Wolfpack
Hello brothers. For a person who writes daily about his workouts/antics and dedicates them to a wide spectrum of warriors, words are now hard to come by.
Let me start at how I even became involved with trying to support anyone dealing with cancer. And in dealing with cancer, I mean as a patient, caregiver, loved one, father, mother, son, daughter, sibling….
Because, as you know, many, many people’s lives are impacted by this.
There are many reasons that guided me on the path to becoming a member of ‘Man Up to Cancer’. In 2016 a longtime friend of mine was diagnosed with colon cancer. To say I was shocked and devastated by the news would be an understatement. But what floored/angered/outraged me was that my friend actually had family members and friends that no longer communicated with him. Because they didn’t know what to say/how to talk about it, among other reasons.
I made a promise to myself that I would always be there for him, to always make myself available if he needed to talk/vent/laugh/cry,,,,whatever. Over the years we shared countless conversations doing just that. We were fortunate in the fact that we could do that over the phone, text, messenger, and in person. We enjoyed being able to share conversations about serious matters and everyday topics or silly topics….Oh his parking ramp exit story is hilarious!
These types of conversations/communication/support are displayed every single day in MUTC. That is what excites me so much about coming to this GOW event! To meet the people that make this happen. I can’t express how wonderful that is to witness. I see each of you doing this and more for each other. Every day when I log in and hear from you, it inspires me to stay focused, stay positive, to reach out to others, to see if I can be of help.
When Joe Bullock invited me to join MUTC two years ago, I was honored (still am). I have come to know many of you from this group and look forward to meeting many more. I am so excited to get to actually meet some of you in person. To look you in the eye, give you a handshake or a hug. I’m excited to meet some of the people that make my days brighter.
Jason Manuge
Jason Manuge
Kingston, Ontario, Canada
Stage IIIC Colorectal Cancer
My name is Jason Manuge. I’m a 34 year-old stage IIIC colorectal cancer survivor, having been diagnosed on February 18th of 2022. I live in Kingston, Ontario, Canada.
Learning that you have cancer is a gut punch. It shakes you to the core and forces you to confront your past, present, and future all at once. It truly is the profound experience that so many survivors talk it up to be. It sucks.
My diagnosis came six years after my mother died from metastatic colorectal cancer. I’d spent some time as a caregiver to her over the years that she was in treatment for her disease. It never dawned on me at the time that there’s an alternative to isolating and bottling up the complex emotions that go hand in hand with cancer. I kept it in. I isolated myself. I almost fell apart entirely as a result.
Facing my own diagnosis, I knew that I had to reach out to others who’ve been through the same thing. Isolating wasn’t an option this time. I thought that my experience as a former caregiver and a newly diagnosed patient would allow me to both share and receive support. So, two days after I was diagnosed, I reached out to Man Up to Cancer and joined the private Facebook group—The Howling Place—so that I could start talking to people. I’m so very glad that I did.
Joining the Wolfpack so soon after my diagnosis was hugely helpful as I navigated the early days of my diagnosis. I no longer had to wonder what to expect as I underwent bowel resection surgery. I knew what questions I should ask my surgeon that aren’t on any hospital website’s list. I learned what I could do to prepare myself and my home for the period of recovery.
As I learned more about my disease and the severity of what was initially presented as an easily curable bowel tumor, I was able to ask questions about chemotherapy. I learned from others who had taken the clinical trial cocktail being presented to me. I came to understand that the side effects profiles would be very different between the treatment options being presented to me. I felt like I could make a truly informed decision about my care as a result.
But it hasn’t all been about taking advice and finding support. On many occasions I’ve reached out to brothers in the pack who are having a rough time, or new members experiencing the same diagnosis. I’ve been able to contribute as much to the group as I ask of it. And I think that’s an important part of the community.
Since joining The Howling Place, I’ve been introduced to men like me from all over the world. With each message of support, every thoughtful question, or rant about the shittiness of the disease, the Wolfpack gathers to offer the pack’s wisdom and support. It has been hugely therapeutic and informative to connect with other guys experiencing cancer. We’re a like minded bunch. Having cancer sucks a lot less because of this group.
The Howling Place is a place to get together, seek advice, shoot the shit, or express the most private and scary parts of having cancer. It is funny. It is helpful. It is sad. But, most importantly, it is a brotherhood.
That’s why, in September of 2022, Man Up to Cancer is hosting the Gathering of the Wolves in Delevan, New York. The gang’s getting together for a weekend of in-person camaraderie and bonding. I can’t wait. Cancer does a lot to take things away from people, but I am grateful to have found Man Up to Cancer and The Howling Place. It sure as hell beats going it alone.
Jeff Phillips
Jeff Phillips
Mission Viejo, California
Stage IV lung cancer
Hi Wolfpack, my name is Jeff Phillips and I am 55 years old. In March of 2018 I was diagnosed with stage four lung cancer and if you have lungs you can get lung cancer.
My cancer journey would start with immunotherapy (Keytruda) treatment every three weeks going forward, as my cancer was in my stomach and lymph nodes and lung. After my first three months they all shrunk by 50 percent and after one year the stomach and lymph nodes were now NED (No Evidence of Disease).
But by October of 2019 my tumor in my lung was growing and I would undergo a week of high intensity radiation. Continuing treatments and walking which I started after I felt better in May 2018 as a way of combating fatigue and to help with my mental health.
By July 2020 I was officially NED and would have my final treatments in October 2021
And as of today I walked 9,691 miles as the treatments and walking went hand in hand to get me to this path of NED.
The Man up to cancer group means so much to me as I was able to connect with other men that we’re fighting the same disease but we had different forms of cancer but we all had the same goal to kick cancer's ass. The support,love,caring and inspiration that is given is amazing to be a part of. This is truly an awesome group.
What it means to be going to the first ever GOW event…
I can’t wait to meet guys that have battled and fought to make it to see this day and remember the ones who didn’t. Celebrating together as one and the emotions of this event will be one that we will never be forgotten. Trevor and Joe you both started something that will last forever and I love you and everyone in Man up to Cancer.
KFG brothers!
Jason Reiss
Jason Reiss
Ridley, Pennsylvania
Stage IV Rectal Cancer
Learning that I had Stage IV rectal cancer at 47 years old was devastating, as one might imagine. After years and years of thinking that I just had a sensitive stomach and hemorrhoids, I found myself at my primary care physician because I knew something wasn't right. Two rounds of bloodwork and then a phone call that sent me to a GI practice made it even more unsettling.
Next, they performed a CT scan, liver biopsy, and subsequent colonoscopy… and then came the three words nobody ever wants to hear on a phone call right before Thanksgiving 2021: You Have Cancer.
Those words light up like a neon sign whenever I replay that phone call in my head. I remember feeling like I was in an episode of Charlie Brown, listening to Miss Halverson giving directions. "Wah Wa Wa Wah Wa Wa," he said, as my life flashed before my eyes.
Was I going to die before the end of the year, like my cherished friend Clarence, who was diagnosed right around the same time with colon cancer and was already non-responsive in the hospital? He passed away on December 5, 2021. Or was I going to have a chance to fight back against the disease I never knew I had?
It was a massive pill to swallow for someone who had never had any actual surgery before. When I had my port installed in my chest, it was only the second time a doctor had to cut into my skin and sew me up. And now, this oncologist—a term I always associated with death—is here in front of me talking about chemotherapy and "Sign this release and sign that release," and here goes 20 pages of "Holy shit, I think they may kill me with these drugs before cancer gets me.."
I like to think of that period as "A LOT" with all capital letters.. because, well, it was A LOT to absorb in a very compressed period. It's still a lot, but it's not always A LOT these days because I've figured out several effective coping mechanisms to help me deal with my diagnosis and everything that comes with it.
As I write this, it's a little more than six months to the day since my wife and I—already in a daze from the whirlwind of tests and doctor appointments—sat in front of my friend, the oncologist, and heard more fun language: "If you had waited six more months to come to see me, I wouldn't have been able to help you at all."
I consider that a victory. Every day I wake up and put my feet on the floor is a victory. Especially the days when I can help one of my newfound cancer friends navigate emotional trauma, or the days when I help one of my old friends who is having a colonoscopy and is stressed about the procedure, or the days when an industry colleague comes to me and says, "Thanks for talking about your disease and trying to educate people. Because of you telling your story, I went to the doctor, and they removed a few polyps."
I post publicly about my experience every time I go to treatment, whether it's good or bad, whether there are setbacks or positives. I want my friends and anyone else coming across my posts to know what I am dealing with—not because I want their pity or thoughts and prayers or money—but because I want them to get checked out before they end up like me. At this point, I've heard the above story about polyps more than two dozen times, which means I'm making a massive difference in my friends' lives.
It's not always easy, and I'm not always strong. Sometimes I cry with them. Sometimes I cry for them. Sometimes they cry for me. There's been a lot of crying recently, which is a strange feeling for a Type A, always plow forward and damn the obstacles of a person like me. I've cried more tears since November 2021 than I cried in the 47 years before that phone call.
What helps me most in dealing with the situation is talking about my disease, whether that is with close friends, family, the random guy in the art framing shop (sorry Mr. Kent!), or my newfound friends at Man Up To Cancer — The Howling Place, which is a Facebook group set up by the founder of Man Up To Cancer, Trevor Maxwell.
The Howling Place is for men only, to talk about the sucky, shitty, not-so-fun stuff that makes being a cancer survivor such a royal pain in the ass, and it's also a place to celebrate victories no matter the size with others who understand the daily, lifelong challenges that come with a cancer diagnosis.
It's here that I have found kinship with people I don't even know. In six short months, I’ve made lifelong friends who understand what I am going through and are willing to extend themselves to help me through the complex and challenging parts.
I, in turn, repay the favor whenever I can. Sometimes I do that through a private message to a member waiting on scan results; sometimes, it's letting someone rant when they got a crappy test result or have just had a bad day. Most importantly, I check in on the group and several members daily because we have a fantastic community of survivors at MUTC. I am so very proud and grateful to be associated with the wonderful people here. One of the great things about this group is that we all come together to support one another when needed.
This year, several group leaders got together to plan the First Annual Gathering of Wolves, a weekend retreat for group members held at the Duffield Camp and Retreat Center in Delavan, New York. It’ll be a chance to provide the members who attend with a full weekend in September of planned activities and brotherhood, and will definitely have a great time with some of the finest fellows I know. I cannot wait to get there and hug my brothers, as the Gathering of Wolves will be one of the major highlights of my year.