JWT - Volume IV
Joe’s Wolfpack Trailblazers
DECEMBER 2020
Joe’s Journey - From Cancer Patient to Cancer Advocate
By Joe Bullock
I started writing The Trailblazer in early 2020, shortly after Trevor Maxwell asked me to be the lead administrator of The Howling Place Facebook group. I wanted to highlight the works of service of many of the group members. Several of our members are not only cancer survivors, but have gone on to advocate for others in the cancer community. In the group we have members like Tracy Morgan, Bret Miller, Stephen Huff, James Hiter Jr., Alex Pabon, Steve Bell and our own Trevor Maxwell. I have reached out to many of these men to learn how to be an advocate and to follow from their examples.
In this month's edition of the Trailblazer, I want to share a bit of my own personal journey from cancer patient to cancer advocate. I look forward to sharing more stories next year about the other men in the Howling Place group who are blazing a trail in the cancer community.
In May of 2018 when I was diagnosed with stage 3b colorectal cancer, I was in complete and utter shock. All I had known about cancer is that people died from it. I had a scare with testicular cancer in my early twenties. After I went through surgery and lost a testicle, I was found to be completely fine and It looked like I had dodged a bullet. I thought to myself — could I dodge it again? Could I just get through it and walk away?
After I was diagnosed with colorectal cancer, I started to search out cancer groups on Google. As I was searching, I started to get numerous requests to share my cancer story. I did not know how comfortable I was with doing that. Honestly, it is unusual for a man like myself to be so open about his cancer journey. Men typically don't want to talk about things that hurt them. Most men don't want anyone to know about the sadness, weakness and feelings of isolation that are associated with living with and being treated for cancer.
In the beginning, I honestly didn't want to share. I just wanted to gut through the pain. You just don't show people your weaknesses and you take care of yourself in this life. That is what my father and grandfather taught me and that was what I was raised to believe.
I thought about my dad a lot after I was diagnosed with cancer. We did not have the greatest relationship and we were always at odds with each other for years. He had died a year before I was diagnosed with cancer, and I was his caregiver the last couple of weeks of his life. I heard his voice a lot during my recovery from cancer surgery and chemotherapy treatments. I could hear him saying repeatedly the things he would tell me as a child. 'Stop being a baby,’ 'You are not hurt! Just walk it off.’ ‘People don't want to see you cry,’ ‘Just be a Man.'
I would hear those words echoing in my head during treatment recovery. Oddly, it would give me some strength in the beginning, but it was very short lived. The sadness and worries of a cancer recurrence started to overcome me. There wasn't a day that I didn't find myself in tears. My wife, Michelle, talked me into seeking help from a therapist and a local cancer support group. I started to rethink how I was emotionally connecting to my cancer. I began to open my heart to the fellow cancer survivors in my local support group and share my journey.
On January 5th, 2019, when I took my last infusion of chemotherapy at my cancer center, there was no bell to ring. My cancer center didn't believe in it. I understood why because there were so many there that day that will never get to ring the bell. It would be so hard to hear a bell over and over again that they would never get to ring themselves. After I walked out of the infusion center that day, for what I had hoped would be the last time as a patient, I just sat on a bench in the hall and cried my eyes out. I only had a few more pills to take in my regimen and my six months of chemotherapy hell would be over.
One month later I had a follow up scan that showed that I was officially NED (No Evidence of Disease). It's the gift that all cancer patients want to hear, but don't know how to unwrap. There are no official directions that come with the packaging of this gift. I felt a bit lost. At least when I was in treatment I was doing something about it. I spent the next few months trying to figure out what I was going to do next about cancer. I will be doing follow-up appointments over the next few years. I realized that cancer was still going to very much be a part of my life. I had been 'friend requesting' men on Facebook who were cancer survivors. I wondered if I could create something to support men going through cancer. At the time, I was in a lot of colon cancer support groups. I found nothing out there that was created by men for men. In fact, no cancer groups had anything that focused on emotionally supporting men in the cancer fight. It felt very intimidating on social media to create a group such as this. I knew it wasn't something I could do alone. What did I know about being an advocate for other men in the fight with cancer? I had just survived cancer myself and what did I have to offer? Who would listen to me? I would pray and meditate on these things for a few months.
I’ve found that many people feel guilty about surviving cancer. They look around at all the cancer patients they had met or knew in the months they were treated for cancer. They wonder why they survived and so many had not survived this disease. People would say to me, Wow you are lucky. I had felt that as well, and knew I could never be an advocate if I was motivated by guilt. My therapist encouraged me to continue to attend my local support group and explore what I was feeling about survivorship, and to bring hope to others. I started going to my cancer center and sitting with other survivors in the very same rooms where I had received treatment. I realized if I could get past those feelings of guilt, then I could really make a difference in the cancer community.
In the months that followed, I would participate in a couple of fundraising activities for various cancer groups. No one really had any options to learn about advocacy. Most groups just wanted my cancer story. I started to feel a bit used as a patient and a survivor. As if I didn't matter and it was all about 'My Story'.
A gentleman reached out to me and once again asked for 'my cancer story'. I almost ignored his message and moved on to other things that day. But I decided to give it one more try and sent him the information he was asking about. Then this guy, Trevor Maxwell, sent me a message thanking me for my story and asking if he could call me. During the call, he said the one thing no one else had said to me before. Something all advocates like to hear, I need your help. This is ultimately what all advocates want to do. It's our chosen purpose. Trevor had created the structure for The Howling Place group on Facebook, as part of his mission in creating Man Up to Cancer. He asked me to be the lead administrator for this special group. He needed me to be an advocate for other men fighting cancer. There was no special training or classes needed. He said to just invite all the men I knew fighting and surviving cancer.
Trevor, while fighting his own battle with stage IV colon cancer, wanted to create a safe space to help men avoid isolation during cancer. This is something he had his own struggles with in treatment, and I felt at times in my own journey. Today this 'Wolfpack' is 850 men strong in just one year. Little did I know this would not be the only group I would advocate for involving cancer. It would just be the beginning of my journey.
One of my hobbies is mailing cards of encouragement to fellow cancer survivors. Shortly after getting involved with the Howling Place group I would meet Jayne Vinson. Her grandson Jayden Oakes is a stage IV colorectal cancer patient. Larry Vinson, Jayden's grandfather, sadly passed away a few weeks ago from a battle with lung cancer. They would come to Chapel Hill, North Carolina, for Jayden’s colon cancer surgery at UNC Children's Hospital. I would be their 'gopher' while they were in North Carolina. I started an encouragement card drive to give Jayden some much needed encouragement before his surgery. I had collected over 200 hundred cards before he arrived. Watching him smile as he read those cards from people all around the world brought tears to my eyes. Jayne taped those cards all over Jayden’s hospital room. The nurses and doctors at the hospital said it was like nothing they had seen before in a patient's room.
Because of my connection to Jayne and Jayden, I would meet other young colorectal cancer patients. I would do encouragement card drives for them as well. As the months passed, I felt more needed to be done. A few weeks ago I had completed the Empowered Patient Leaders class in Colontown, a colorectal cancer advocacy group. They asked if there was a particular group I would like to start in Colontown to create awareness. Pediatric colorectal cancer came to mind, as it has become a passion of mine. I helped to create the 'Colontown Jr Project' with a fellow Wolfpack member, Jason Randall. I hope it can help guide these families through what has to be the worst thing a parent has to go through. My hope is the team at Colontown can give them the support they need in the cancer community.
I know it's a cliche to say that surviving cancer has changed my life. In so many ways it has done exactly that for me. To be able to bring men together to support one another in fighting cancer has been such a gift. I will always be thankful to Trevor Maxwell for calling me and asking for help. Isn't that what advocates are supposed to do? I look forward to sharing what the men of The Howling Place group do to support others in the cancer community next year. I look forward to sharing more of my involvements as an advocate in the cancer community. As I alway say 'Cancer might be done with me but I'm not done with cancer.’