JWT - Volume XXXII
Joe’s Wolfpack Trailblazers
January 2023
As I start this fifth year as a cancer survivor I realize how truly blessed I am to have such an active leadership role in the cancer community. I'm just so incredibly proud of the men who are part of Man Up to Cancer’s 2,000-member group known as The Howling Place on Facebook.
They might have joined because of cancer but first and foremost they are just men trying to live their best lives. Their identities as men does not surround them being diagnosed with cancer. They started their journey as husbands, partners, fathers, and brothers before cancer invaded their lives. They fight everyday to not allow cancer to consume them. I am proud to lead this group and to use this blog every month to share their survivorship stories.
One of the hardest struggles and sources of the depression in the group is that loss of identity found among these men and myself. It’s something the members ‘howl ‘ about everyday in a group that we affectionately call the ‘Wolfpack’. We are not a treatment group but an emotional support group for men fighting cancer.
When my friend and the founder of Man Up To Cancer, Trevor Maxwell, created the group three years ago he understood the loss of that identity as a man himself dealing with a cancer diagnosis. Being a husband and father of two young girls made him especially vulnerable to the loss of these types of identities as a man facing stage IV colon cancer. Being a cancer survivor myself, watching the group grow and face these kinds of challenges has changed how I advocate for others in the cancer community.
Taking on the position this year as the community manager of Man Up To Cancer and being the lead administrator for the Facebook group has become a passion in my life.
Today a majority of the posts in the group are about the members just asking for emotional support as they face appointments, scans and various treatments. We do have a daily morning report from our buddy Scott Clark, the occasional cat meme from Micheal Riehle and that one post from Gary Bledsoe that seemingly somehow puts him in Facebook jail.
The members of the group just want to know that another man understands what they are going through in their fight with cancer. We are not bound by cancer but bonded by our love for one another. The men express that everyday in the support they give one another.
If you know a man needing emotional support in his cancer journey, share this blog with them today because the Wolfpack doors are always open. Check out the webpage at manuptocancer.com for access to the group, our merch shop, the Man Up To Cancer Podcast, additional blogs and articles.
As I begin the third year of writing this blog I am able to share the cancer journey of these three trailblazers in the cancer community: Brandon Martin, Neal Hanley and Denny D. Williams. I look forward to sharing more of the cancer stories in the months ahead from this incredible group of men because they are the true trailblazers.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
Brandon Martin
Brandon Martin
Thornton, Colorado
Stage IV Colorectal Cancer
Late March 2021, on a Sunday afternoon, I experienced a sudden onset of searing pain in my lower abdomen, collapsed to the floor and started to pass out. Called 911. Taken to the ER at a local hospital. Was rolled into a CT scan with no exam room stops along the way. Several nurses came into the scan room with a hospital bed, told me to get into it because I was going to have emergency surgery right now!
The scan showed that my colon had ruptured, and all the poop was in my abdominal cavity. This was about 5 P.M. Woke up in a room with wires, multiple tubes in my arms and abdomen, a plastic pouch attached to my side and could not move because of severe abdominal cramping.
Early the next morning an older gentleman entered my room. He introduced himself as the surgeon who operated on me. He told me that, due to diverticulitis, my colon had perforated. He removed 7” of my colon, cleaned up my insides removing the loose poop and he gave me an ostomy during a 4 hour procedure. The ostomy was only going to last about 90 days until my colon healed from the surgery. 14 days in the hospital and 5 weeks staying with friends until I was strong enough to climb stairs and take care of myself again.
That next May I went in for a colonoscopy to check on the colon healing status. Woke up from the procedure and the doctor who performed the scope informed me that there was a mass in my rectum and that it was probably cancer. He had taken a tissue sample and that it would be sent out for testing. The test came back positive for stage 3b rectal cancer.
The surgeon who performed the emergency surgery referred me to my current oncologist. We developed a plan that involved 5 weeks of daily radiation and pills for chemo. When that routine ended a scan showed that the tumor had shrunk in size but not small enough for removal surgery. I then went on IV infusion chemo and other cocktails every two weeks for several months.
When that treatment ended, scans showed that the tumor had shrunk considerably, and I was referred to a surgeon who performs abdominal surgeries only. Met with him, he gave me the option of keeping my ostomy and completely removing the rectum or he could try to just remove the tumor but leave what would be left of my rectum in place. He told me that the second option usually led to a poor quality of life for patients. I opted for option one. That surgery happened at the end of January 2022. The rectum was removed along with 12 lymph nodes and my but hole was sewn closed after another 4 hour procedure. Further testing revealed that 4 of those nodes were also cancerous. The surgeon also stated that there were clear margins and that he was confident that he had gotten all of the cancer. He also prescribed the Signatara test for surveillance.
In April of this year the test came back with a sharp spike. My oncologist ordered a scan. That scan revealed metastasis to my lungs, 8 spots, and one spot in the center of my liver. My oncologist called with that news, declared me stage 4 and instructed me to restart taking the pill form of chemo. She said that there were too many tumors in my lungs for radiation or surgery to be effective and the tumor in my liver was too deep for radiation or surgery as well. I am now on surveillance and chemo for life. The stage 4 diagnosis phone call sent me reeling.
It was in June that I discovered MUTC which has given me friendships that I had not known for decades. Some of these new friendships have roots in GOW 2022 which I was fortunate to be able to attend.
Denny Williams
Denny Williams
Louisville, Kentucky
Stage 2 Esophageal Cancer
For months, I was having issues in my abdomen that would not go away. I had been to the doctor multiple times and even had an ultrasound that told me everything was fine.
When the pain continued, it was time to visit the GI doctor. During this appointment, it was decided to get a scope done. I was also late for my colonoscopy so why not get both done at the same time. This was in October 2021 and due to COVID, the next available screening was March 2022.
At the time of the GI appointment, I remember the nurse practitioner asking me if I was having trouble swallowing as that would be a warning sign. At the time, I really wasn't. That changed a few weeks later. In between Thanksgiving and Christmas of 2021, I began to get choked and even regurgitated food at times. I knew something was wrong.
Many friends told me about folks that needed to get their esophagus stretched and honestly, that is what I was expecting to hear. For some reason, I emailed the nurse practitioner and didn't call. I simply stated that I couldn't wait until March because I was really having issues swallowing food. Every 3-4 bites would ultimately get stuck and I would regurgitate what I attempted to swallow. To my surprise, she replied and said a cancellation opened up the schedule for January 4, 2022. This is where my journey begins.
When I came to after the scope, I vividly remember the GI doctor speaking to my wife with pictures of what he found. "He was right. Looks like a tear in his esophagus." Both my wife and I thought that seemed odd. Didn't even know that was possible. They immediately sent me for a CT scan and told me the results would be available tomorrow.
January 5, 2022 will be a day I will never forget. I'm a high school athletic director and was working a bowling event when I received a text message from the GI doctor. He asked me what I was doing the following day for work and asked that I not go in until he called me. At that point the worry set in and I couldn't wait to speak to him. I immediately called his cell phone to hear the news. During conversation, I heard those three words. "You have cancer."
I was diagnosed with esophageal cancer. The tumor was at the base of my stomach where the esophagus connects. It was deemed as adenocarcinoma and was told we need to move quickly with treatment. One week later I met with my team of doctors including the oncologist, radiologist, and surgeon. I was set to implant my intravenous port, rest for a week then begin chemotherapy and radiation. I was to receive 5 rounds of chemo and 28 radiation treatments.
As each week went by, I was surprised how well I was doing. Don't get me wrong, I wouldn't recommend this to anyone. Side effects were present mainly with fatigue and burning sensation from the radiation. My oncologist defined the radiation as having a sunburn on the esophagus. The pain brought tears to my eyes when I tried to eat. In my head, I thought it would be much worse. I even kept my hair through treatments. It wasn't until I was done when my hair decided to fall out. I was done with treatments but I looked the sickest at that point.
Only cancer patients will understand the hurry up and wait. That is where I was on my journey. Needed to let the chemo and radiation wear off before having surgery. During this time is when we did get some good news. My first scan revealed that the treatments worked and the tumor was gone.
In May 2022, my surgeon performed a full esophagectomy which means they removed my entire esophagus and the top 1/3 of my stomach. Surgery took roughly six hours to complete. I spent four days in ICU and another two in a regular hospital room before being released home. Because they were replacing my esophagus with the remainder of my stomach, I was not able to have anything by mouth for two weeks. A feeding tube would be used for nutrition and for medication. In the beginning, I would use the feeding tube for 16 hours a day. Once I passed the swallow test two weeks after surgery, I could begin a liquid diet and slowly introduce soft foods. The feeding tube was removed on June 14, 2022.
It's now December 2022 and I have had 6 months to adjust to my new normal. For me, eating is a challenge. This surgery is comparable to the gastric bypass surgery. My stomach capacity is shocking for a person my size. That truly has been the biggest adjustment, learning how much I can eat. That is also the reason I have lost nearly 40 pounds in the process. Doctors tell me it will be nearly impossible to gain back the weight. I have had issues with dumping syndrome because I tend to overeat. My eyes are definitely bigger than my stomach.
During my journey, I have had a wide range of emotions. I've been angry trying to figure out why this happened to me. I've been sad thinking I would not survive this cancer. A quick Google search will give statistics that only about 20,000 people are diagnosed with esophageal cancer per year. Only 4,000 call themselves survivors. This is a difficult cancer to diagnose and in many cases, it gets to the point where nothing can be done to fight the disease. I've also considered myself to be blessed. The people I have met this past year have been amazing. I would not have met these folks unless I had cancer. That is why I consider it a blessing.
Now, it's my time to pay it forward. Currently, I am mentoring 3 guys who will be having surgery this December. I believe it helps me cope with emotions realizing what my body went through and I hope to pass on my experiences giving others hope. I'm a volunteer for the Friend for Life
Cancer Support Group. I've participated in Epic Experience regional meet ups and hope to get to a camp soon. The MUTC Wolfpack has been another support group I've leaned on.
No one truly knows what the future holds. The way I feel now gives me hope that my bout with cancer is over. My next PET scan is scheduled for March. Scanxiety is a real thing but I plan to go into the next one anticipating more good news. I like replacing the words " you have cancer" with "no evidence of disease".
Denny D. Williams
Athletic Director
Saint Xavier High School
Neal Haney
Neal Haney
Ellensburg,Washington
Essential Thrombocytosis and NED Myelofibrosis
Hi, I’m Neal Haney. I am a father of four to Laci, Addison, Emilee and Violet. I live in Ellensburg, Washington and am originally from Tacoma, Washington.
This is my story. My diagnosis is Essential Thrombocytosis and NED Myelofibrosis. Diagnosed in October of 2021. These are rare, incurable blood cancers, typically of those 60+. It is believed, at this point, that I have had cancer since I was at least 17. At the time of writing this, I just turned 33.
I have been on a quest, most of my life, to figure out why I was sick, covered in skin infections, my hands turned red and blue, the itching, the bone pain, the headaches, vision changes, fatigue and more kept happening. No matter what diet, how much I washed my hands, took care of myself - it was a downward spiral. The doctors didn’t care. I was passing out from almost fatally high blood volumes. I then found a cancer specialist Dr. Maria C. Ghiuzeli at Fred Hutch in Seattle, WA. She was the first to listen and got me on palliative care and daily chemotherapy for life.
The first oncologist I saw said simply “You have Essential Thrombocytosis, it's incurable. I don't want to put you on chemotherapy because it will give you Leukemia quicker. Anyway, your symptoms don’t make sense, just take aspirin and I’m sending you back to a rheumatologist.”
That was the end of the appointment. I was alone and sat in the car. I then called my mom, my Dad and my wife and it was the absolute worst. I remember just being so lost until I got angry about it. How could they just brush me off? Are my symptoms not serious? How is cancer just taking aspirin to solve? What is happening?
My previous hardships came into play. I freaked out and started researching. I was dying and felt like it too. There had to be help - I wasn't seeing the right people. I pleaded with my doctor, only for her to say “I thought Thrombocytosis was only an overproduction of cells, I don’t see why you need a specialist.” I filed a complaint against her until they referred me out. Why was it so hard to get help? I’ve now learned that 90% of the medical field, at least, doesn’t know anything about blood cancer or its symptoms. I encourage people to learn from my experience and become your own advocate.
If you are wondering why you feel off and your blood tests and slightly abnormal - do some research. Get the right doctors. Listen to your body. Doctors do not know everything.
Before cancer, I already had six disabilities. I still worked, raised kids and fought many battles with addiction. I believe that this made me ready to tackle cancer. I also believe that getting diagnosed with cancer has made me a better person. The community I’ve built, the negativity
I’ve let go and the relationships I have mended since my diagnosis have formed a life where I actually have a shot to be happy with myself and my life.
Palliative care has allowed me to seek therapy for the first time in my life, the proper psychiatric help and the proper treatment to help my symptoms and my quality of life. The first group I was in that I reached out to was A Bunch of Dads on Facebook. I was lucky enough that Joe Bullock was in that group and invited me to join Man Up To Cancer. I was skeptical at first but I needed people in my shoes to talk to. I quickly felt at home during the most vulnerable times after my diagnosis, as my family shut me out and friends fell through the cracks rather than confront what was happening with me. Cancer is a blessing and a curse to me. I am thankful for this group and my opportunity to share with such a wonderful community!
This story isn’t over yet! There will be more to add!
Never give up. Listen to your body. Fight Fight Fight and KFG!