November/December 2021

“Friendship, Grief And Thanksgiving”

For my final Trailblazer of this year I want to share some thoughts of how my relationships in 'Cancerland' have impacted my survivorship. I love to share the survivorship stories of the men of The Howling Place Group each month. These stories have encouraged me to be a stronger advocate in the cancer community.

To me, your survivorship story should be ever evolving and moving forward if you are able to live past your cancer. The men of the group are proving this fact everyday. It has become a personal goal for me to connect to my cancer emotionally this past year. It's been easy to invite men to the group over the last couple of years and to share with them about my work with Man Up To Cancer. The hardest part for me was connecting with the group emotionally. I think this is a struggle for many men in the group and men in general. It takes time to open some of those emotional scars that cancer might have left you with in the fight, but this might allow you to have a lot of personal growth. It will also help you to be in the moment with that person who is newly diagnosed or continues to battle the disease.

If I'm totally honest with myself, in the beginning of this year I felt a bit frozen emotionally and it wasn't just neuropathy left from my chemotherapy treatments that was causing it. You might even say that cancer left me a bit shell shocked at times. I had decided earlier this year I was going to spend this year building some incredible life long relationships — while also allowing myself space to grieve the loss of people who I have truly loved in the fight, and being thankful for the ones that have beaten the odds of cancer. I have learned even more this year that ‘If cancer is done with me, then I'm in no way done with cancer.' This has become the mantra in my personal cancer journey.

In the early part of 2017 I had come to realize that my life seemed a bit dull at times. Up to that point in my life I had been a stay at home dad and started to feel like I had been losing a lot of my purpose in life. The dynamics in my family were changing fast as the years progressed. The kids were getting older and my role seemed to be lessening at home. I remember walking and praying one day that I really needed something to shake things up a bit in my life. It definitely wasn't for the lack of things I had going on. I was a part-time Pre-K teacher, an involved parent in my kids' various activities, I was keeping things up at home and a caregiver to my parents with their various health issues. I think I was just focusing a lot on the goals and dreams I had not accomplished over the past 49 years.

Being a teacher was an accidental career path but wasn't my true passion. I honestly didn't know what my passion was at that point in my life, but in no way did I think cancer would be the thing to shake things up. It is true you have to watch out what you pray for. Sometimes in life it might actually happen in a way you were never expecting. In July of that year I had already lost my dad to prostate cancer and I started showing symptoms of colorectal cancer myself. For months I thought it was just stress of being a caregiver or hemorrhoids but not at all cancer.

Months later, after denying the symptoms, I finally made time to see a doctor. After a scheduled colonoscopy I was diagnosed with stage IIIb colorectal cancer. My world was shaken to its core and my life as I knew it had stopped. The next few months would involve surgery to remove the cancerous tumor, chemotherapy treatments, fighting depression, loneliness and accepting my own survivorship. In the aftermath of all this, I found my passion in helping men avoid isolation during cancer. You can have all the love and support of family and friends who are dedicated to get you through cancer, but still feel incredibly alone in the fight. It was how I truly felt because many times it can just be you and the four walls around you in the fight and cancer just fills the room. This can be emotionally suffocating to a cancer patient unless you have a group of peers who understand this struggle. I wanted to help men to break down those walls and not let cancer consume their spirits. I just needed help to fulfill it. I needed a friend to do this and that friend is Trevor Maxwell.

I have spent much of my over the past two years working with Trevor building the Howling Place group on Facebook as a part of manuptocancer.com — a framework he created online to emotionally support men impacted by cancer. To be honest we didn't really even know each other very well. Trevor himself was still fighting this beast called stage IV colon cancer, and I was trying to maneuver my new life in the survivorship of Stage IIIb Colon Cancer, specifically because I was NED ( No Evidence Of Disease). I had spent a few months prior to meeting Trevor trying to figure out my space in 'Cancerland'.

Sometimes it's hard to find purpose or know how to offer support to others after you yourself have survived cancer. I was looking for a purpose on the other side of cancer and Trevor did the one thing no one else had done. He is someone that had a desire to advocate and offer emotional support to other men fighting cancer. He asked for my help and gave me purpose and meaning in my own survivorship. Trevor himself was in the fight to be able to reach that point of NED in his survivorship as well. Our paths as survivors were very different at the time, but represented much of the group we were building. Our goal was to challenge men to accept help and to reach out to a community of peers that would help them in the fight. No man should have to fight this battle alone.

The fact is that cancer is so emotionally driven it took a lot of adjustment for me to accept these friendships so quickly in the group. In the beginning of 2020, Covid added to an already isolating year for the men joining the group, especially those in treatment. I spent much of the beginning of last year building the group out and reaching out to other cancer groups to offer support to men battling any form of cancer. I was a man on a mission that I didn't want any man to feel alone in the fight with cancer. As the men joined the group they were wanting to reach out for support and I had to challenge myself to give it.

Honestly, before cancer I had grown pretty closed off as a person from other relationships. You could say it was because I was middle-aged, but I think I had just been going through the motions of my family life that I mentioned earlier. It had gotten filled with responsibilities, being a caregiver for my parents with their various health issues, a devoted husband, and a father to my two children. I had gotten most of my identity before cancer as a man from all of that life had given me those responsibilities. Cancer would be the lighting bolt in my life that changed my direction and purpose. I had to rethink what it meant to be a friend, especially with cancer. I tended to avoid people and most of the time I shied away from new relationships.

Trevor has taught me over the last year that it wasn't the quantity of members of the group, but the quality of the relationships that were going to make the difference. I had to learn to slow down and live in the moment. It's what the men needed coming into the group. Cancer brings a lot of vulnerability, which causes you to open up to others but once you get there you open yourself up to some pretty awesome friendships even if you lose a few in the fight. Sometimes a heart has to be broken to be healed. Mine has already been broken a few times over the past year but I'm a stronger man because of it.

Back in May 2018 when I was diagnosed with cancer and started treatment, I began to reach out to men in online groups who were going through the same challenges. Selfishly I was looking for answers of how to keep my identity as a man and not lose it to cancer. It was hard to admit I wasn't handling things well and let my guard down. It is something that can be hard for most men to own up to in life and I was one of them.

At the urging of my wife I sought support from a therapist at my local cancer center. We would spend weeks breaking through all the sadness that cancer diagnosis had brought to my life. I remember the first time I felt this loss of identity. My wife and I were moving our daughter into her college dorm room. My job was to unload the car, to bring the items to her room and then they were going to decorate. After the first trip, my wife saw me fall on the steps from the window. It was a hot summer day and it was getting the best of me.

The side effect of fatigue that chemotherapy brings can be heart wrenching especially when you feel that you are letting your loved ones down. They of course understand what you are going through, and don’t blame you. You just blame yourself as you are left in tears sitting on a bench as they do the work you were supposed to be doing. Damn cancer! This is where I started to feel the loss of my identity as a father and a husband. I will never get that day back that cancer took away from me. Shortly after this I started to see a therapist at my local cancer center. Therapy would not change that feeling, but gave me tools to deal with it in the future. As I reached out to men in various Facebook cancer support groups, they truly understood this type of emotional trauma that cancer can bring.

One of my earliest friendships I had in 'Cancerland' was when I started to go to a support group at my local cancer center that was led by my therapist. I would meet one of the strongest women I ever knew in the fight. Her name was Erin Duffy Wood and she was a stage IV colon cancer champion. We had met through another online support group called Colontown. She was there to greet me with a hug and a smile the first day I was at the support group at Duke Cancer Center. She introduced me to many survivors in the colon cancer community both online and locally. She quickly showed me how important those relationships were in the fight. Sadly, Erin passed away recently after 16 years of battling with this disease. I went to Erin's memorial service and you could tell she was as in charge of that as she took charge of her cancer. It was a love letter to each of us that got the opportunity to be present that day for her service. She comforted us on that day in spirit as she did in the support group.

One of the first friends Erin connected to me was Brent Call. His wife Valerie would sit next to me during the memorial service for Erin. Brent won his battle with cancer a few months before Erin. He was one of the first men I would invite to the Howling Place group. I would visit with him often when he came for chemo treatments at Duke. Brent would become more than just a friend, but a brother in the fight. It wasn't the cancer that would defeat him but his enormous heart just gave up one day in the hospital.

Where Erin would teach me how to be a champion for cancer, Brent would teach me how to laugh in the face of it. He would share with me about the friendships that were helpful to him in the fight and would encourage me to do the same. In my last conversation with Brent he told me he loved me and appreciated our friendship. I will never forget that last conversion and will hold it close to my heart.

Erin and Brent would be the first ones to teach me you don't have to be alone in the fight. This year I started to learn that grieving was an essential part of my survivorship and I had to learn to accept it. If I didn't learn to accept it I would let cancer take control of my own personal journey and I would never become the advocate I wanted to be. I have learned to put the dreaded survivor's guilt aside. I truly just miss my friends. My survivorship from cancer is fueled by their love and friendship everyday.

One of the first men in the group who 'won' his battle with cancer earlier this year was Curtis Garbett. He fought for five years and passed away at age 41. I would go to visit with Curtis as he received treatment at Duke Cancer Center for stage IV bladder cancer. He would travel from Virginia to be a part of a clinical trial to try defeat the cancer that had a hold on him. Sadly it would not save him from cancer and to me he was a hero in the fight. He had created the ‘Crush it for Curtis Foundation' to spread awareness about the disease and to help others in the fight. I would send Curtis cards in the mail to encourage him. It has become a favorite hobby of mine and a way to give back to others.

Curtis passed away before he got to read his final card I had sent him. A friend of his was cleaning his room after he died and she opened the letter. She messaged me that she believed that card was intended for her to read. The words brought her the comfort she needed in that moment. I honestly don't remember what I wrote but I was glad it brought her comfort. I think the written word is far more powerful and personal than an emoji or stroke of a few keys on a keyboard.

I continue to send multiple cards each week to encourage others in the fight. One of my favorite organizations to send cards through is ChemoAngels.org as a 'Card Angel'. There have been several men that have joined the Howling Place group because of the cards I sent to them through this program. This past year I even got to meet one of my card senders in person, Dave Pruit. He has fast become an active and encouraging member of the group. Like so many members of the Howling Place group, Dave is not letting his cancer define him.

Earlier this year we were faced with the deaths of three of our own administrators in the group. Alex Pabon, Wes Matteson, and Jared McMillan all passed away under the age of 40 from stage IV colorectal cancer. When I asked each of these men to become an administrator for the group last year, they each said they joined the group to give back and to let men know they were not alone in the fight. These are the core values of the group as Trevor Maxwell created it.

They all wanted to offer emotional support to the members of the group and were incredible advocates. I was especially close to Alex because he lived less than an hour from me. We had talked on the phone often as he navigated his treatment options.

Alex invited me to help him to gather patients who were starting chemotherapy treatments and to send chemo care packages to them through his Azul Foundation. We would send a total of 50 chemotherapy care packages out earlier this year. He had such a heart to help others in the fight. Even while dealing with the uncertainty of his own diagnosis, he remained close to his faith in God everyday.

Alex and I would meet together for lunch and pray together before each meal. I love to hear Alex pray and it even made me feel close to God even in my own personal lack of faith at times. One day after Alex passed away I went to a pier on a local lake that Alex liked to visit after his visits to the cancer center. Alex told me he would stop there to pray and clear his head after visiting with the doctors. I would walk along that same pier that day as I thought about his passing. I felt a sense of calmness come over me as I thought about Alex. It was as if he was letting me know he is at peace. I know Alex is in heaven praying for each person he has left behind. I truly miss my brother and friend and today I am inspired to send out care packages to those starting chemotherapy. I think of Alex whenever I create one and send it out.

One of the hardest deaths for me to accept this year was that of Jayden Oakes. It almost broke me as an advocate and I didn't think my heart could take his passing. Jayden was diagnosed on July 17th, 2019, at age 11. He would battle stage IV colorectal cancer for two years. In fact he was laid to rest on that exact date two years later this past July at age 13. Jayden loved to be active and played every sport available to him in his small town of Corning, California. His grandmother and caregiver Jayne Vinson made sure he got to do all of it. Jayden struggled when cancer took all of those abilities away from him.

I remember when Jayden came here to Chapel Hill, North Carolina, for his HIPEC surgery at the local children's hospital. I went to pick him and Jayne up at the airport. We would pass the lacrosse fields near campus on our way to the hotel they were staying before his surgery. Jayden said to me 'When I beat this cancer I'm coming back here, to go to college and play lacrosse. I just have to beat this cancer first.' Today I can't pass those fields without falling into tears.

Jayden made the brave decision after 18 months in treatment to stop. He wasn't giving up, he just wanted to battle cancer on his own terms. He wanted a better quality of life and Jayne honored his request. Jayden not only enjoyed sports and hunting, but riding his motorbike. I remember the day he passed away. I was laying on the couch watching the X-Games BMX Championships (something I typically don't do). I was thinking how much he enjoyed riding his bike and the many videos I had seen him doing. I got a message from a friend shortly after he passed away. I think Jayden's gift to me was to leave me with a happy memory of him. It was his way to let me know he was now carefree and no longer in pain. That's just like how he felt when he was riding his bike.

This year in his honor I created Colontown Junior to help emotionally support families that have a child with colorectal cancer. My goal next year is to create an advocacy platform to reach pediatric GI clinics across the country. The goal is to let the parents know at the clinics that kids get colon cancer too. The hope is to save lives by detecting colon cancer early. One thing Jayden would say when advocating for others in the fight was this: 'If kids tell you they don't feel good, please listen.' We will Jayden, we will. Rest In peace my friend. We will do the fighting now.

For me personally this year has been the most challenging one emotionally — even harder than the year I was diagnosed. At least in my case, with my stage IIIb colorectal cancer diagnosis, the plan was laid out and the goal was a cure. That’s something I am incredibly thankful for today. The first year it was pretty simple beyond the diagnosis. As my doctor at Duke told me from the very beginning 'We got you, I just need you to believe it.' The plan was surgery to remove the tumor, six months of chemotherapy, and then to be NED (No Evidence Of Disease).

In the midst of all of it I'm thankful to my wife, Michelle Bullock, who encouraged me to seek professional help to deal with the emotional turmoil cancer can bring, even if I didn't see it at the time. No one tells you what to do beyond that as a survivor. To maneuver your life as a survivor can be very difficult if you try to do it alone. I am thankful that I have some awesome friends in 'Cancerland' who have encouraged me to use my voice and share my journey.

One phrase I have learned this year is to 'hold space' for someone. It means 'to take the initiative without prompting, to be empathic to the person's situation or circumstance, and make time for that individual to do whatever is needed for them.' I am grateful this year to have had many opportunities to do that for my fellow survivors, especially those that are just starting their personal cancer journeys. It's what so many did for me when I was diagnosed and while in treatment. It has given me purpose and has empowered my survivorship.

I am so thankful for the medical advances that are saving the lives of so many today in the colorectal cancer community. One of the care packages I sent out earlier this year was to a gentleman named Rich Emory. His wife Jacquie said he smiled from ear to ear when he got his care package in the mail. Jacquie and Rich did not accept no for an answer when it came to him surviving stage IV colorectal cancer. They pushed hard and got him the life-saving liver transplant he needed. He still has a long battle but he is headed in the right direction and they have much to celebrate today. Hopefully many more will get this opportunity in the battle against colorectal cancer. His story will bring hope to so many in the fight.

‘The Wolfpack’ by artist Ryan Miller, based on Joe Bullock’s cancer journey

This is why I think many times in 'Cancerland' we don't take the time to celebrate survivorship. I think we get bogged down with the personal guilt of surviving cancer. It prevents us from spreading the hope that I know the ones that have 'won' their journeys this year would want us to do.

Earlier this year I got the opportunity to work with the organization 'Twist Out Cancer'. I was chosen as an inspiration for a painting about my cancer journey. The artist, Ryan Miller, was able to capture my emotional journey as a cancer patient and the support that I brought to The Howling Place group. We affectionately call the group 'the Wolfpack' and it is the chosen name of the painting. It was created as a celebration of survivorship for myself and the members of the group. I also thought heavily of the men we have lost in the group to cancer. Over time I have learned I don't struggle with the guilt that comes with surviving cancer. I just really miss my friends.

Don't get me wrong — Yes, this year I have grieved many deaths, cried at a few funerals, and have been in that moment to comfort my friends and their families. I have learned to pick up their swords and march on in the face of cancer. It's what I have chosen to do for them out of love and the friendship that we have shared together.

As I approach the end of this year I feel stronger as an advocate because of the impact all these relationships have had on my personal survivorship. This year I have allowed myself to feel all of the emotions that cancer has brought to my survivorship. I no longer deny its existence as I had done so much in the past. I have rejoiced when my friends declare they are NED (No Evidence of Disease). I have sat with them as they have cried in my arms because they fear treatment isn't working. And I have sat next to them as we mourn the loss of another friend to cancer.

I am learning to hold space for all of it because it brings purpose to my survivorship and arms my advocacy in the cancer community. If you are a man needing emotional support while battling and surviving cancer, come join the more than 1300 men doing it everyday as a part of the Man Up To Cancer - The Howling Place group.

I want to thank you all for the love and support I have received from the cancer community. Many doors have been opened to me with my work in a number of platforms that I have been involved with this year. I am deeply appreciative to Man Up To Cancer, Fight CRC, Colontown, and Twist Out Cancer for the way they have supported me in my work as an advocate. Have a wonderful holiday season with love and the creation of good memories. To my brothers of the 'Wolfpack,’ as always KFG!

— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)

JWT - Volume XX

Joe’s Wolfpack Trailblazers

JWT - Volume XX

Joe’s Wolfpack Trailblazers

JWT - Volume XXI

JWT - Volume XIX