JWT - Volume XVII
Joe’s Wolfpack Trailblazers
August 2021
I have a love vs hate relationship with Facebook. There are times I want to forget its role in my life but at times I am grateful for its existence. Social media has helped me to build an incredible emotional support system and as well build my advocacy as a cancer survivor.
A few days ago I happened to look down at my phone one morning to see a memory Facebook had presented to me. It was from August 22nd, 2018. I was sitting in the chemo chair at Duke Cancer Center in Durham, N.C., to receive my second chemotherapy infusion. I had been battling stage 3b colorectal cancer for a couple of months. I started having alot of doubt about my diagnosis for a couple of weeks. I started to think to myself 'Is this treatment going to kill the cancer?' as everyone was telling me at the time.
I remember a 'friend' had asked me if I had started to put together a bucket list 'just in case'. I was like in case of what? Evidently this person had only known people that had died from cancer. Most people up until then had all been giving me positive reinforcements. No one had presented the idea that I might die from cancer. Needless to say I 'unfriended' this person from my life because I didn't need the negativity in my fight. A survivor of cancer have a 'Bucket list' or I guess you would call them ' Survivorship Goals'.
I woke up the morning of August 22nd, 2021, in a hotel room in Marion, N.C., to fulfill one of those survivorship goals. I wanted to help organize and lead a fundraiser that specifically supported my cancer. I had spent the previous year as an Ambassador for Fight Colorectal Cancer. I was given the opportunity to create a 'Climb For A Cure' For Fight CRC in North Carolina. It was one of 8 cllimbs across the county to support colorectal cancer research. I was joined by 15 other amazing caregivers and cancer survivors on that day.
We climbed to the summit of Mt. Mitchell as a team. I was not physically prepared for such a climb. The ascent to 6500ft above sea level was taking a toll on my body. I honestly wanted to give up halfway to the top. I happened to look behind me and noticed J.J. Singleton, one of our survivors. He is battling stage IV colorectal cancer and would be receiving his 104th chemotherapy treatment next week. I thought to myself, if he can do this I can do this. We all encouraged one another to keep going until we reached the summit.
When we got to the top of the mountain and celebrated our accompaniment together, I went off to the side and fell into tears, thinking about the people I wish could have been with us. One of those friends was Brent Call. He was a member of The Howling Place Group and a fellow Carolina brother. He passed away from stage IV colorectal cancer a couple of months ago. I know he would have loved to have been there with us. I thought of so many others who had passed away; men I had gotten to know since being diagnosed and surviving cancer.
We raised a flag at the summit of Mt. Mitchell to honor our accomplishment. We each signed the flag and dedicated it to the youngest who had 'Won' their battle with Stage IV colorectal cancer in the past year. Their names were Jayden Oakes, Vinny Robins, and Cameron Harris-Brown.
All of these young men were under the age of 18 years old when they died. We need a call to arms as to why this 'Adult' cancer is impacting the lives of children. This is another survivorship goal I want to see happen.
With this edition of the Trailblazer, I want to highlight each of the members of The Howling Place Group who supported me with the climb. It was great to spend the day with these brothers of the wolfpack: J.J. Singleton, Michael Holtz, Rick Will, Tim McDonald, and Shane Rixom. I’m excited to share the survivorship stories and thoughts from the day. Shane is an awesome caregiver and supporter to our group.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
J.J. Singleton
J.J. SINGLETON
CANTON, N.C.
STAGE IV COLORECTAL CANCER
I was diagnosed September 4th, 2015, with most of my colon removed and went through 12 rounds of Folfox chemo. Six weeks later cancer came back and spread to my abdominal wall and lymph nodes. Three other types of chemo all failed. Cancer was growing and wrapped around my stomach, leading to 450 days of TPN feeding. A clinical trial saved my life. I’m through with 102 chemo treatments.. 103 next week.
I climbed because I felt it was a way to honor my fellow colon cancer brothers and sisters that have passed on. It was also a way to fight and climb for us to find a cure so future people won't have to go through the hell we have been through.
Note from Joe: J.J. Singleton has been taking the lead in his survivorship and has become an amazing advocate for young adult cancer. He is currently an Ambassador for Fight Colorectal Cancer. He was featured on the Man Up To Cancer Podcast earlier this year. He was an amazing co-leader in the climb this year. We plan to make it a yearly event together.
Michael Holtz
MICHAEL HOLTZ
KNOXVILLE, TENN.
STAGE 3B RECTAL CANCER
My cancer diagnosis in 2012 was filled with incredible ironies, which my gastroenterologist pointed out moments after he uttered those dreaded words, “you have cancer.” He pointed out that I was diagnosed with rectal cancer during Colorectal Cancer Awareness Month while I was also working for the American Cancer Society.
My diagnosis also came five days after my 43rd birthday. After a number of scans and having just about every probe imaginable stuck up my backside, Sarah and I learned that I had stage-3B rectal cancer. The treatment plan was fairly straightforward: 28 rounds of radiation treatment aimed at my rectum combined with five weeks of oral chemotherapy (Xeloda), followed a couple of months later by surgery to remove the tumor, then finished with 12 rounds of the chemotherapy cocktail FOLFOX over the course of six months.
As the public relations guy for the American Cancer Society office in Knoxville, Tennessee, I knew from the moment by gastroenterologist spotted the tumor that I wanted to be wide open about my cancer journey, wherever it led and realizing that in the end cancer could kill me. I wanted to bring my social media followers and my family along for the ride, from the upside to the ugly and everything in between. And I wanted to do it with dignity, grace and a sense of humor; after all, we were dealing with “butt stuff.”
I used my voice then to bring people into the experience. Today, I continue to use my voice as a leadership volunteer for the American Cancer Society Cancer Action Network, where I share my story with local, state and federal lawmakers to urge their support for legislation that impacts cancer patients, survivors and their families. For example, after 10 years of work, we helped close a loophole in Medicare where recipients got surprise bills when they had a colonoscopy when polyps were found.
I’m also blessed to be part of the Man Up Cancer community, where I share my experience with other men facing cancer, as well as for Fight Colorectal Cancer, the Colorectal Cancer Alliance and Chemo Angels. Howard Thurman, noted author, theologian, educator and civil rights activist wrote, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive and go do that, because what the world needs are people who have come alive.”
Using my voice and my experience to advocate for those who cannot, and to share my experience with others is what makes me come alive. Funny thing that, since my surgeon used to remind me that the cancer I had was supposed to kill me. I’ve pledged to myself and to God that as long as I have breath, I will fight cancer in every way that I can in the hopes that someday, whether I’m here to see it or not, cancer will become part of medical history.
Rick Will
RICK WILL
FUQUAY-VARINA, N.C.
STAGE IV SQUAMOUS CELL CARCINOMA
My name is Rick Will. I was given the news on July 14th, 2014, that I had stage IV squamous cell carcinoma found at the base of my tongue. I was two weeks shy of my 50th birthday. At the time of my diagnosis I was in the best shape of my life, which was a blessing with what was coming from treatments.
I was running five days a week training for my first 1/2 Marathon and working out as many days. Once treatments started I tried to keep up my training but chemo and radiation took its toll on my energy. After four months I was declared cancer free but I will never be fully free of it because of the changes it did to me physically and mentally. I have struggled with depression from the side effects of the treatments and wanting to be the person I was before my diagnosis.
In 2019 I was introduced to the Ulman Foundation Cancer to 5K program which brings survivors and people who may still be in active treatment together with volunteer trainers who work with you to train for a 5K. Being with this group brought back my excitement for running and pushed me to chip away at the fears, anger, and depression I carry daily. The Ulman Cancer to 5K was my first involvement with a survivorship group. Feeling understood and not alone with my struggles was awesome.
I’m finally running again on a regular basis and working out regularly, staying strong and ready to Fight to Live.
Note from Joe: It was incredible having Rick join us today. He encouraged all of us on the climb that day. I'm excited to join him with the Ulman Foundation Cancer to 5k program again this year.
Tim McDonald
TIM McDONALD
TAMPA, FLA.
STAGE IV COLON CANCER
With no family history or obvious signs of colon cancer, I was suddenly diagnosed in November 2020 with stage IV colon cancer with metastases to the liver. I was fortunate to have an oncologist at the beginning share with me that I should always get a second, third, or even fourth opinion at every step along the way. When he referred me to an oncologist closer by where I lived, I was told I had three years to live. This was not my story and I took my first oncologist’s advice and sought a second opinion at Moffitt Cancer Center.
They put me on a very aggressive chemo thinking that my relatively young age (52) and overall good health would give me a higher chance of success (no spreading or growth of cancer), but would come with more aggressive side effects.
In the past 8 months, I have seen nothing but reduction in tumor sizes and no further cancer in all my scans. It is working. But I still wasn’t satisfied with the thought of being on chemo for the rest of my life, so I started researching other options. Since my oncologist at Moffitt told me surgery on my liver was not an option, I did some research and was introduced to Dr. Hernandez at University of Rochester Medical. He presented my case to their tumor board and even though I wasn’t a candidate for surgery, I may be for a liver transplant.
The first step was getting a PET scan that showed very good results and no cancer outside of my liver. I’m still waiting to hear back, but if their team agrees, then a potential biopsy on a lymph node and colonoscopy to remove the remaining cancer in my colon would be needed before I was able to get a transplant.
I am still hopeful this will happen and know it’s only possible because I have advocated for myself from the very beginning. There are two things I am passionate about today. One is encouraging people to get screened for colon cancer. The other is to let people know that just because one doctor tells you something, doesn’t mean that’s the way it is. Be your own advocate.