In the summer of 2017, a couple of months after my dad had died from prostate cancer, I started to have some blood in my stool, abdominal pains, and fatigue. I figured it was brought on by the stress of settling my dad’s estate and grief from dealing with his death.
During a routine physical appointment, my doctor suggested that it was time for me to get a colonoscopy, considering I had just turned fifty. It was quite unexpected, but it got me thinking about the importance of taking care of our health as we age. I scheduled my colonoscopy for a few weeks later in November. Two days before my procedure it so happened my mom died suddenly of a heart attack. Once again, I ignored my symptoms and canceled my colonoscopy to help my sister settle my mom’s estate and her last wishes that she wanted to be done. I just continued to gut it out and ignore the pain I was feeling awful over those previous months. I honestly figured all the emotional turmoil I was feeling was causing the fatigue and stress in my body. Over the next few weeks, I just felt deeply saddened because I was not going to have my Mom over the holidays. We had made holiday plans right before she died, and it was heart-wrenching. I just felt emotionally and physically weak. Little did I know it was the cancer inside me that was causing the pain and discomfort. Finally in the spring of 2018, at the urging of my wife, I scheduled the colonoscopy that I so much needed. I had ‘Doctor Googled’ enough that I figured it might be cancer. I had just hoped I was wrong. My wife and I drove to the G.I. clinic for my colonoscopy. As the procedure began, I drifted off to sleep because of the twilight drugs they had given me. I woke up during the colonoscopy and looked up at the monitor that the doctor was looking at during the procedure and I saw what was in my colon. There was a meatball-sized tumor hanging off the side of my colon. My doctor could see that I was starting to be upset. I knew I was looking at my cancer right in front of me. My doctor said in a gentle voice that he had gotten around the tumor and up through my colon and everything looked clear. They had removed two small polyps and measured, marked, and biopsied my tumor. He wanted to let me know that ‘We have you’. The hope is that we have caught this cancer early.
When I got to the waiting room, I could not look my wife in the eyes. The guilt of not dealing with my cancer earlier that year was setting in on me. I knew I had just turned our world upside down. She just grabbed my hand as we listened to the doctor. I am glad she was there because I could not have comprehended what he was saying. I just felt sick, and I wanted to vomit. The doctor felt certain that I was stage three by the size of my tumor and location but felt we had caught it early. My wife is a registered nurse and could understand the clinical side of my cancer. It was the emotional turmoil that cancer caused that we were going to need help dealing with over the next few months. Cancer not only crushes you physically but takes a devastating toll on you mentally. Healing both of these aspects of cancer can hopefully create a better outcome for the patient. I know it did for me during my cancer journey and it would become the focus of my advocacy in the cancer community. Overall, I felt like I was being a good patient. My wife is a nurse at the same hospital as my cancer center. She had figured out the plan of action along with my care team at the hospital. I can describe it as showing up at my wedding. I had better show up on time and be ready to go. The plan was to kill the cancer. My wife was not going to allow anything less than that of the cancer. The plan was surgery to remove my tumor from my colon and any infected lymph nodes. I had my colon resected during surgery.
After surgery, the plan was to do ‘clean up’ chemotherapy of Oxaliplatin infusions every three weeks with Xeloda pills in between each session. I was doing fine at first until the emotional side effects of cancer hit me. Over a few weeks, I became a very sad and a broken man. I could handle the physical side effects and even the nausea brought on by the medicine. It was the loneliness and self-isolation that overwhelmed me during treatment. I am generally an outgoing person however, chemotherapy had the opposite effect on me.
At my second treatment visit with my Oncologist, he noticed how sad and stressed I looked that day. He said, “remember what I told you from the beginning? We got you!” and we got a plan of action. He wanted my wife and I to sit down with a therapist to talk things out. I thought I was fine but my wife on the other hand thought differently. The pressure of being my caregiver, a full-time nurse, and Mom was getting to be too much for her. She could not be my only sounding board it was just putting too much pressure on her. I agree to listen to my caregiver and seek help. Sometimes as patients, we must put the ‘care’ in the caregiver. We are not the only ones who are suffering because of this disease. I wasn’t going to let cancer steal my marriage and hurt the ones I love.
I went to a few sessions with my therapist and started to go to a local support group she was leading. It was helpful to talk to other patients going through cancer treatment at the time. I started to reach out to other men online looking for support. I began to feel better as I found other men in similar situations and cancer.
After I finished Chemotherapy, I waited a month before I got my first set of scans. I got the results that every colon cancer patient hopes to hear the phrase NED (No Evidence of Disease). Honestly, it is like a gift you don’t know how to unwrap. You are told basically the cancer is gone but will be monitored for the next four years to see if it comes back. I wasn’t sure what to do with that myself. I went out to celebrate with the family that night, but I was not sure what I would do next. How could I feel good when so many I knew were not even close to the same status.
My therapist encouraged me to continue to come to the support group. Being that my status was ‘no evidence of disease’ my story would bring a lot of hope to the members of the group. She also told me that I might find I needed support from the group as a survivor. She was exactly right. As the months followed, I found myself grieving my cancer. At least I was doing something about it during chemotherapy treatments and now I felt like I was waiting for it to come back. The anxiety of a cancer reoccurrence was starting to settle into my mind. To get past that was another battle in my cancer journey. It would be a few months before realized giving back to others in the cancer community is the greatest way to combat this kind of anxiety.
A fellow cancer patient and member of Colontown had encouraged me early on in my stage3b colon cancer diagnosis to find ways to share my cancer story and to give back to the community. He told me that men typically don’t want to talk about their cancer story, or they are ashamed they have cancer. His name was Charles Griffin Jr. and he became a huge part of my cancer story. After he died in the summer of 2019, I was reminded of the words he told me and others in a speech he had given to a group of cancer survivors. His speech ‘ We Are All Glowsticks’, Charles told us that day that being a cancer patient is like a glow stick, you must be broken to shine. I had been broken and now I needed to shine. I will never forget those words and was on a mission to discover how to exactly do that as a survivor. As the months followed, I looked for ways to encourage other cancer patients at my local cancer center. I participated in a couple of local fundraisers and started to share my cancer story in various colon cancer groups.
Around the end of 2019 had met a fellow cancer patient and Colontown member named Trevor Maxwell. He is living with metastatic stage IV colon cancer. He had been building a framework for a webpage and writing a book about the physical and mental struggles that surround men going through cancer. He called it ‘ Man Up To Cancer’ which became manuptocancer.org. He wanted to change the narrative to what ‘manning up’ means to cancer and men. He did not want men to mentally close shop but to have an open heart and a warrior spirit as they battle cancer. We found this support that was lacking and very much needed for men in the cancer community. It reminded me of what Charles Griffin Jr. said months before ‘ Be a glow stick and shine’. Trevor asked me if I could help him build a Facebook support group called ‘The Howling Place’ as a component of the webpage. It was going to surround the idea of a wolfpack supporting each other. In the months prior I had been friend-requesting men on Facebook who had a cancer diagnosis of any type to offer friendship and support. Trevor asks me to be the lead administrator of the group. On January 1st, 2020, I invited over 400 men to join the group and most of them joined within the following days. As of today, we have almost 260 men in ‘The Wolfpack’ as the men of ‘ The Howling Place’ like to be known. I continue to fight the anxiety that comes from the worry of a cancer recurrence but now I have a ‘wolfpack’ to run with today. I have decided that ‘ If cancer is done with me, I am not done with cancer.’ My journey as a cancer advocate was just beginning.
Today I serve as the Chief Operating Officer for the Man Up to Cancer nonprofit alongside Trevor Maxwell, its founder and CEO. We have three programs to offer emotional support to men in the fight against cancer. They are our Chemo Care Backpack Program in which we offer care items to men in our Facebook group going through treatment, The annual Gathering of Wolves retreat, and our local MUTC chapter groups in which men get together to offer support.In the aftermath of cancer sometimes you search for a purpose for continuing to be a part of the cancer community. One of the first activities I got involved in was with a Get Your Rear in Gear 5k in Raleigh, N.C. with the Colon Cancer Coalition. Cancer support groups like Colontown.org, Colon Cancer Coalition, and Man Up To Cancer have given me purpose and brought passion to my survivorship. I will be forever grateful to these organizations for empowering me as a survivor to be able to help others in the greater cancer community.
My Cancer Journey
By Joe Bullock
