JWT - Volume XXXVI
Joe’s Wolfpack Trailblazers
August/September 2023
Joe Bullock
Durham, NC
Stage IIIB colorectal cancer survivor
Cancer advocate
All Roads Lead To The Gathering Of Wolves
Three years ago in the fall of 2020 I got in my car and I took off on a 13 hour road trip to visit my buddy Trevor Maxwell in his hometown of Cape Elizabeth, Maine. If you knew me you would know this was pretty much out of the ordinary. I’m very much known as a ‘homebody’ and I had not ventured outside of the area where I live in Durham, North Carolina during all of these 55 years of my life on this earth. The most I had ever done this was during my three years in college that I lived a couple hours away in the city of Charlotte.
All of that changed after surviving cancer because I have become accustomed to airplane travel with all the advocacy work I have been doing since that weekend with Trevor. It was the beginning of me not being so much a cancer patient but becoming an advocate to support others in the fight.
One thing about surviving cancer is that it creates a certain type of fearlessness that I had never known before. After being diagnosed with stage 3b colorectal cancer, I knew there was a risk of having a recurrence or that the cancer might metastasize further in my body. Becoming a cancer patient, you tend to become more accepting of risk.
Trust me at the time of that trip I had played all the scenarios out in my head and the risk of what might happen to me on this road trip. I couldn't help but think what if my car breaks down, I get lost, I get in a car accident, or if I have to deal with road rage from another driver. I mean, I had taken many family road trips but not alone and not without my wife to navigate the way. This was also in the midst of a worldwide pandemic and I also worried about bringing Covid to Trevor’s home because I knew his immune system was compromised because he had been battling stage IV colorectal cancer. I think we both understood the risks we were taking at the time but we both knew it was important for us to meet in person.
Trevor Maxwell and Joe Bullock
A few months before our visit together, back in January 2020, Trevor had invited me to take part in helping him build the Man Up To Cancer platform. He first invited me to the Facebook group he created called The Howling Place group and later because of our tremendous growth at the time, he asked me to be the lead administrator of the group. Who knew men actually like to talk to each other, especially about something as devastating as being diagnosed with cancer. As our growth has continued Trevor asked me to become the community manager for Man Up To Cancer, a role I am proud to take part in to support the platform in a greater way.
Being the lead administrator of a Facebook group is something I had never done before but because of the desire I had to emotionally support men fighting cancer I took a risk in taking on the role. It's something Trevor and I had in common because both of us realize how men can be impacted both mentally and emotionally by a cancer diagnosis. It was easy to do this when you have a friend like Trevor who believes in you. If we have learned anything on this journey together it is that it only takes one person to say ‘I got you!’ that makes the risk worth it. Without that kind of support from Trevor I would have never been able to do this today. We try to extend that same support throughout not only The Howling Place group but also with our various Man Up To Cancer chapter groups worldwide.
Trevor and I both had our own struggles mentally being diagnosed with cancer and we knew it was something that was not talked about very much in the cancer space, especially amongst men. Our plan was to change this perspective in the cancer community and give men a place to “Howl”. For me personally I had to take another risk, get out of my comfort zone and open up to a group of men I had never met before. In many ways it has brought a greater purpose to my own survivorship of cancer. Being that Trevor is still battling metastatic stage IV colorectal colon cancer I just hope we get to work together for many years to come . We continue to be motivated together by the OPEN HEART AND WARRIOR SPIRIT that carries us every day.
While in Maine, one of the many conversations Trevor and I had was about encouraging members of the Facebook group to have local meet ups, which was incredibly hard in the midst of a worldwide pandemic. Crazy enough it actually happened because one of the group members ran into another member at a local chemo infusion center while he was getting treatment at the time. This is what has become known in the Facebook group as a #WolfpackMeetup and this would cause tremendous future growth in our community over the next couple of years.
As we walked together on the beaches of Maine those couple of days Trevor shared with me his desire of having an annual men’s cancer retreat. He envisioned a type of lodge atmosphere where the members could just visit together and talk about anything, much like we had done over those few days together. It wasn’t about being diagnosed with cancer but being around other men who understood what it meant to be living with that kind of disease. I could tell Trevor was inspired to make this happen and I had no doubt it was going to be an amazing experience for the members that would be at the event.
When Trevor and I said goodbye after visiting, we were both unsure what the future held at the time for either one of us. I will admit I shed a few tears on my drive home those next couple of days because I knew it would be awhile before I would see my friend again in person. Trevor and I would continue to work together on the platform virtually and he would start his quest to make the first Gathering Of Wolves event become reality. Trevor and I would have that long awaited hug two years later along with 50 other members of The Howling Place group at the first inaugural Gathering Of Wolves event that he had envisioned.
In just a few weeks we will have our 2nd annual Gathering of Wolves retreat at Duffield Camp and Retreat Center in Delevan, NY. All of this has come together because of the work of our incredible MUTC Leadership team (Don Helgeson, Michael Riehle, Jay Abramovitch, and Danny Riggs) along with one special ‘She Wolf’ event planner Amanda Wolanske. Amanda shares her story with the Trailblazer this month as a caregiver for her dad, the impact cancer has had on her own life and planning this incredible event. Two other men, Frank Lehman and Tom Vibert who will be attending the event this year shared their cancer journeys as well in this month's edition. All of our roads have led us to the Gathering Of Wolves this year and what a wild ride it has been because we are stronger together as a pack.
Amanda “The Planning Ninja” Wolanske
Amanda Wolanske and her dad, Gary Wolanske
Amanda Wolanske
Buffalo, NY
GOW Event Planner and Caregiver
Unbeknownst to me, my preparation for being the Gathering Of Wolves Event Coordinator started back when I was a young girl of nine. Like every child leaving the house for the day, I would pack a bag; my checkers board, money for ice cream, and my tackle box filled with hundreds of stickers that each had its own story. What made me different from other children was that I was not off to play with friends. Instead, I went to the hospital every day with my dad, Gary Wolanske. He was diagnosed with aggressive brain cancer at the age of 43. To pass the time, he and I would play checkers in his hospital room. The ice cream sandwiches were secretly smuggled to him and all the other patients I could treat. I would often be found sitting with those who didn’t have visitors, entertaining them with stories about why each sticker was special.
My childhood education included what it was like to live with and fight cancer. It was an aspect of my life as normal as going to school. I learned empathy for patients who were not having good days. I celebrated the victories of those that were. I learned what courage looks like. Most importantly, I was shown that cancer never stops love.
My father, Gary Wolanske, and his chemo buddies were a group without a name. Social media and the internet had not been invented yet. There would be short phone calls between them, but even that was limited because of long distance charges. Many of the men fought alone in isolation. Their meetups were chemo appointments.
We were blessed in accessing new technology, the VCR, in the treatment room. Every two weeks, dad and I would go to the video store and rent westerns; the kind that he knew by heart that brought the comforting memories of life before cancer. I watched these brave men enjoy John Wayne and Clint Eastwood while they discussed the ups and downs of life with this disease. When the moments of laughter came, it was always music to my ears. It was my first introduction to a wolfpack.
I am overcome with joy when I think of the honor it is to work with this modern day wolfpack; one that my father would have been proud to have belonged to. In each of the wolves, I have had the privilege to meet thus far, I recognize in them the best parts of my father.
I see his hope in the pack’s belief of a better future. The men of Man Up To Cancer care for their family as fiercely as my father did his. His humor is evident in the good natured banter that brings much needed laughter to everyone involved. I see his strength in every man who greets the day with a desire to live their best day possible, in spite of whatever mountain they are climbing. I am friends with men who have looked after and supported me like my father would have wanted. I witness a brotherhood that reaches out a hand to help whoever needs it; a way of life he always embodied. Before GOW, I had one man I looked up to, now I have a pack of them.
I hope that when the GOW weekend comes to a close, the wolves will journey home smiling and fulfilled with a sense of belonging and memories that carry them until the next gathering. I will return home knowing that I will have poured my heart into a sacred event that will have honored my father’s wolfpack and the modern day wolfpack, together, for the warriors they are.
Frank Lehman
Frank Lehman
Belfast, Maine
CLL and Melanoma Survivor
My dance with cancer began in 2012 when I was diagnosed with CLL . At that point it was "watch & wait" till the next year in 2013. I found a lump in my chest so I went to my PCP, did an image and then said "don't worry, it's a gynecomastia. I was told “Don’t even have to follow up". Man was I dumb. A year later in late 2014 I was seeing my PCP when I mentioned the lump was bugging me. So he decided to cut it out right in his office and that was a big mistake. All of this started my journey to Dana Farber in Boston for a full mastectomy with all the trimmings along with chemo, radiation, and Tamoxifen.
In 2016 I had 3 surgeries for Melanoma - thankfully not metastasized. So after that I started CLL treatment with Imbruvica - for me it was a wonder drug. Early in 2021 I found a hard spot on the left side of my neck (having learned my lesson I went immediately to Dana Farber) and miraculously in a very short order I had an 8 hour surgery to remove a tumor from the base of my tongue (the DiVinci robot for that) and a total neck dissection where they got 78 nodes, many of which were cancerous. Next in my treatment plan was a brutal radiation series that cooked my tongue and throat - but thankfully they got it and I was cancer free for 6 months before it metastasized into my lungs. I did 10 months of immunotherapy - but alas the meds didn't work. So now I'm doing a 3x's a month chemo treatment here in Maine but directed by Dana Farber.
Seems like the music keeps playing and I keep dancing. Finding you guys has lifted my spirits to soaring heights.
Tom Vibert
Tom Vibert
Greensboro, North Carolina
Stage IV colon cancer
My name is Tom Vibert. I'm a stage 4 metastatic colon cancer survivor living with Lynch Syndrome.
I was diagnosed with stage 4 colon cancer in 2012. I had a small lump in my right abdomen that was getting a little tender and during a routine physical my doctor said we should get that checked out. Two days later I had a CT scan. Two days after that I was standing in front of a surgeon. I had my first colonoscopy the next morning. I had partial colectomy surgery a couple of days after that. The surgeon said he was going to hook me up with an Oncologist to take things from here. That’s how I found out it was cancer. I left the hospital having lost 44 pounds.
I was 49 years old. I started thinking about my family history that was always in the back of my mind but was now front and center. I had a cousin pass away in 1994 at the age of thirty-five. I had another cousin pass away in 2001 and one at the age of forty-one. I was determined that I was not going to be the next family statistic. I was “all in” in beating this disease and I would do everything possible to achieve that. The only thing I was in control of was being the best patient I could be. This was how I could contribute to the fight. I could control my faith, nutrition, hydration, exercise, and my attitude. Cancer was the opponent that needed to be defeated.
One of the first things I did was get genetic testing. This was at the suggestion of my Oncologist. It was not covered by my insurance. I actually thought about it for a few days. I wanted my doctors to have whatever they felt they needed, so I got the genetic testing. This is when I found out I had lynch syndrome. However, I wasn’t quite sure there was a benefit for me and my current cancer situation.
I spent the next two years on chemo and radiation treatments, but the tumor kept coming back. At this point I was on a lot of narcotics and dealing with a lot of pain. It hurts to eat. I was down to 128 pounds. The pain was ridiculous. There was absolutely nothing on the table. It seemed we had done all we could do but nothing was eliminating the cancer. It was a dark time.
I have 3 cancer research hospitals within 65 miles of my house. I had awesome doctors. The options were still slim and none. So, I went and got a second and third opinion. One at UNC Lineberger and one at Sloan Kettering, New York. My doctors were doing all they could.
When I got back from New York, my local Oncologist told me that Duke Cancer Center (DCI) had called and said they had a clinical trial that may benefit my fight. So off to Duke I went. The pharmaceutical company thought I was too sick for the trial. I could barely walk in the cancer center that day. My Duke doctors disagreed and got me in.
The trial was with an immunotherapy drug approved for certain lung and melanoma cancer patients. I had colon cancer. My enthusiasm wasn't that great. But on the other hand, everything else we had tried had failed.
The clinical trial turned out to be a game changer. It was at this point that I realized that the most important thing I did was get genetic testing. And that was a suggestion, and I had no idea why I was doing it. Genetic testing allowed the clinical trial to find me. I spent over two years on the trial. The first treatment caused the tumor to shrink more than any of the chemo or radiation had done the past 2+ years. As of this writing I am six years NED. I am 11 years from diagnosis.
Gloria Steinem said “The final stage of healing is using what happens to you to help other people. That is healing in itself.” That pretty much sums up my attitude now. Seeing how a solution for my colon cancer came from a therapy intended for lung and melanoma cancers was huge. Cancer research was on full display in my fight. You never know where a solution may come from. I now advocate for anything that has to do with cancer research. It gave me the chance I was looking for. I now want others to have that chance as well.
I started doing charity cycling events that promoted cancer research. The Victory Ride in Raleigh, NC, and Pedal The Cause in St. Louis, MO are two major events I participate in. I always tried to do things that I felt cancer was trying to stop me from doing. I describe this as “getting in cancer’s face”. Those two cycling events are “getting in cancer’s face” on a huge stage. Cancer hates that.
When I first heard about Man Up To Cancer, I was intrigued by the level of sharing that was going on. I was not in a cancer fight at the time so I hovered on the outskirts. It was like sitting around a campfire with a bunch of guys that were currently in or had been in the trenches of a cancer war and the total shit show that comes along with it. It validated my advocacy for cancer research and how the reality is “Real”, and the reality is “Now”. I see people searching and going through the process of a cancer fight and I see those who need their “chance” now. I’ve been through all that. I get it.
There is a different demeanor when speaking with a person that has cancer or has fought through cancer. The stories take on more meaning because the source is coming from a place that I may have been. I didn’t have a place like this when I was in the fight. I see how beneficial it can be to reach out and get a response from people on the same team. The opponent is cancer and all that it brings with it. I am amazed at a lot of things people are going through that I did not. But there are a lot of areas I can contribute to as I’ve been there and can express a perspective. There are even a lot of characters and shenanigans going on as well. I contribute to that also. It can be therapeutic. It can also be brutal at times when you see something that helped you is not helping others. And when you see someone make their final ascent up cancer mountain. Again, it’s a reminder that the reality is “Real” and it is “Now”.
The GOW event was fun as it brought the campfire analogy to full fruition. A gathering for sharing face to face. I enjoy the real cancer level discussions and now you could follow up with a hug. There is a lot of love and understanding. The honoring of those who have left us far too soon is very emotional and real. Hearing the stories was amazing. It can be very emotional stuff. I find it also therapeutic to share your story as well. Everyone there “gets it.” And even with all that cancer crap going on, it’s a fun time as well. It is great to see the characters that show up and bring their humor with them as well.
GOW’23 will be twice as big as the first one. More stories and more friendships. My expectations are the same but on a larger scale. The big reality is some that were at the inaugural GOW are now not with us. We will get the chance to honor them as they will be dearly missed. Overall, the experience will be emotional and beneficial to all who attend.
Hope to see you there …. Tom