JWT - Volume XXIV

Joe’s Wolfpack Trailblazers

April 2022

I remember in the fall of 2018 when I was undergoing chemotherapy treatments for stage 3B colorectal cancer. I was at the height of the emotional distress that cancer brings to many patients. It was like when I was a child and I would visit the beaches of coastal North Carolina with my family on vacations. I was fearful of the crashing back and forth of the ocean waves. I was very cautious as I moved closer to the waves because I was worried that I might get caught in the undertow and the waters might overcome me.

There are times when the cancer 'waters' can seem rough and the currents would quickly drag me down in the depths of my sorrow because of the chemotherapy I was enduring. Many times I needed someone to throw me an 'emotional' life preserver to pull me out of the rough currents that cancer brings in this journey

In the beginning of my cancer journey I didn't know many cancer survivors. I had only met a few at my local support group at my cancer center. I started to search online and connect with other survivors I had met from social media. The funny thing was my therapist had warned me against having too many 'social media' friendships because they weren't 'real' relationships. What I didn't realize at the time was that one of those social media friendships would have an incredible impact on how I approach my survivorship and the way I advocate for others in the fight with cancer.

A few months later I would travel to discuss the future of ' Man Up To Cancer' with my friend Trevor Maxwell as we walked and watched the waves crash on the ocean shores of Maine. Having met friends like Trevor in my cancer journey has made the harsh waves of cancer seem not as scary and more acceptable. I'm truly blessed today to have gained not only a few 'cancer' friendships, but people I consider life long friends to support my survivorship today. We have become forever bonded by this disease and I will always be eternally grateful for each of them.

When you first hear those words from your doctor that 'You Have Cancer,’ it can be mind blowing to say the least. I remember sitting in his office and just feeling like my life was being sucked out of me. As I sat and listened to him explain my cancer diagnosis, I could just feel that the cancer was filling up the room. All of the conversations for the next few weeks between my wife and I centered around my cancer diagnosis. We had to start to tell our kids, family members and friends that I had cancer. I had to quickly figure out how I was going to balance my work life and cancer treatments. My wife and I no longer made any future plans for our family. Our focus became saving my life and she had to quickly adjust to living with a cancer patient. I began to feel both the burden and the guilt of being a cancer patient in those first few days of being diagnosed. I found out that some friends would support me and others would look away because they just didn't know what to say. It only took a few short weeks for my life to take a completely different direction and was now one of a cancer patient.

In this edition of 'Joe Wolfpack Trailblazers' I'm featuring a few new members of The Howling Place group — Man Up to Cancer's emotional support group on Facebook for men impacted by cancer. For some of these men, it's the first time sharing their individual cancer stories. They have all stated that being a part of the group has been an additional emotional support they were not expecting. It's given them a safe space to 'Howl' in the midst of their cancer journey. Thank you to Cody Buus, Jon Acton and Tom Anthony for sharing your cancer stories in this month's article.

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

Jon Acton and family

Jon Acton

Indianapolis, Indiana

Stage 3 Rectal Cancer

I have been a stage 3 rectal cancer fighter since September of 2020. I don’t say survivor because I accept that my fight is ongoing. I am also a 30-year Crohn’s Disease fighter so the cancer has been a very unwelcome guest to an already crowded party. I don’t believe my journey is more difficult than others. In fact, after reading many of the stories shared on Colontown I am reminded of how lucky I am at this stage. If my short story can help someone I am happy to share.

There are some unique aspects to my journey that I hope nobody else has or will ever face. I was diagnosed along with two friends, including my best friend all within a few months of each other. The three of us all began our teaching careers together and became close friends that remained throughout different roles in various school districts. My best friend, who was diagnosed just two months before me, has already passed. My other friend continues his fight with grace, courage and tenacity. Within the last year multiple staff members, friends, cousins and even my dog all passed from various forms of cancer. Although not helpful, it has been difficult to not project my path with their ultimate outcomes. That is a constant battle each time I look my two young boys ages 13 and 6 in the eyes. Each time I hold my wife and my other best friend's hand. My Doctor has given the crystal ball numbers of life expectancy. I am a stubborn soul and I fully intend to extend those predictions. However in weak moments; early in the morning when everyone is asleep, my mind will wander to negative thoughts.

To add to the stress, my employer and I have separated. I began my most recent role in education as a school Superintendent on March 2, 2020. Because why do anything easy…I started this position just before the world shut down. On my tenth day as a new school Superintendent I closed down an entire school district for what would end up being the remainder of the school year. I may have had the world’s shortest “honeymoon” period ever as an educational leader. I did not realize at the time, but the clock immediately began ticking on my professional tenure.

On February 14 of 2022, the school district and myself parted ways. I will not dig deep into details, but from their perspective, they needed someone healthier to lead. Now, they couldn’t legally say those things, but that became a key and central factor in the decline of my professional relationship with the board of school trustees and my superiors. So not only had cancer taken my health, my best friend and even my dog, it was now taking my career.

During this journey I have tried to remain upbeat and positive especially for my family, friends and anyone who might be watching my story unfold. Often I have felt like the wizard from The Wizard of Oz. If you pulled back my curtain of projected confidence you would find a much different story. You would find someone constantly worried, angry, sad, confused and depressed. The words I spoke to others to try to motivate such as “What are you going to do with your time?” Or, “Why wait in trying that next adventure, taking that trip or eating your dessert first!” I would say these lines but not hear them myself, until a recent visit to my oncologist office.

You see, I have many things to be grateful, happy and appreciative for. For the past 6 months all of my scans have been clear and my numbers have been low. All good things, check that, great things. However, what has been the most important line at any point of my journey was provided by my oncologist. He said, “Don’t sit around and wait for the bad news.” I understand that my cancer will return with vengeance. I understand we have no viable surgical options. I understand that at this moment in time we do not have a viable treatment plan. But I refuse to sit around and wait for bad news.

We are trying to not just hear those words but be actionable. Our family is planning a trip to Disney World this summer. Of course Murphy’s Law arrives as we are trying to visit the Magic Kingdom just as Disney is undergoing tremendous political controversy. Remember, why do anything easy right? Cancer has given us the opportunity to do the things we have challenged others to do. Am I nervous about doing Disney when using the restroom constantly is a problem? Yes. Am I worried about the constant neuropathy making walking all over the Magic Kingdom an issue? Yes. However, I would be more upset long term if I sat around and just waited on the bad news. Am I worried about how I will provide for my family when the last of my salary expires in June? Yes. But I have decided to pursue a business venture called Broken Shells that entails writing a book (currently about half finished), motivational speaking/consulting with my friend mentioned earlier, and a clothing/apparel line.

I go into this venture with no experience in certain areas with the possibility it may fail. However, I will not just sit around and wait on bad news. I will no longer allow cancer to dictate to my family and I the conditions under how we must operate. I am a former high school and college football coach. During our journey our family has used an old battle cry from my coaching days. Hoist the Jolly Roger (pirate flag) Onward We Sail….Expect Victory!

For anyone reading this story, I pray that you refuse to allow Cancer and all the unknown consequences that accompany your journey impact your ability to believe in yourself. When you see Broken Shells become a global sensation, you can say you read about this crazy guy from the start. And when you don’t think you can handle one more thing, I hope you raise your own Flag, continue to sail on and Expect Victory on the darkest of days.

Expect Victory!

Cody Buus

Cody Buus

Duluth, Minnesota

Stage 4 Rhabdomyosarcoma Cancer

I had a feeling back in July of 2021 that there was something wrong. I was seen several times with different symptoms that would come and go, but nothing was confirmed and I needed to wait for a CT scan. After continuous puking without any relief, my primary doctor and I made a plan that if I puked another time I was to go to the ER so I would be able to get a CT scan right away.

I went to the ER on October 26, 2021. A CT scan found multiple masses in my abdominal cavity and also found my kidney was swollen five times its normal size due to a blocked ureter. Three hours later, I was in surgery getting a Nephrostomy tube in my right side to drain my kidney. They also took multiple biopsies from various parts of my abdominal cavity. I was diagnosed with Stage 4 Rhabdomyosarcoma. Ten days later, I had a port installed, Echocardiography and a baseline PET scan.

Eight days later, on November 4, 2021 my first son was born. He has been the best distraction through all of this and I truly believe he joined me on this journey at just the right time. I couldn’t have asked for a better side-kick on this emotional rollercoaster. No matter how I’m feeling, I’m glad I have him by my side through it all.

I began Chemotherapy on Friday November 19, 2021, with consultation from The University of Minnesota. I was hospitalized for four days and was given three different Chemo drugs as well as Doxorubicin for 48 hours straight. Ten days later, I was back in the hospital for a seven day stretch where I was given Ifosfamide for 120 hours straight. I also took chemotherapy pills each day.

I continued this Chemotherapy cycle for four months. I decided to get a second opinion from The Mayo Clinic of Rochester and after sending medical records and biopsies, was accepted within seven days. Within two weeks of being accepted, I went for a consultation and was informed that I was misdiagnosed and actually have Small Round Blue Cell Sarcoma. I was also told that I would have cancer for the rest of my life and will be on Maintenance Chemo for the rest of my life as well.

I am currently doing three rounds of Chemotherapy to shrink the tumors as much as possible. I will go to The Mayo Clinic every nine weeks to make sure the drugs are working. If not, there are a couple other clinical trials to try. When the time is right, I will have HIPEC surgery. They will remove as many cancer cells as they can and eliminate any other smaller cancer cells.

I believe everything happens for a reason. God chose me to go through this when my son was born so I can show him I have the strength and so does he. As much as I hate the pain, I like it at the same time because it lets me know I’m still here and still fighting. God knows what he’s doing.

Tom Anthony

Tom Anthony

Vinalhaven, Maine

Squamous Cell Carcinoma

First a bit of background and forgive me if I’m too long winded.

My name is Tom Anthony. I live on Vinalhaven, which is an island on the coast of Maine. We have a 15 mile ferry ride to reach the mainland which takes an hour and 15 min. in good weather. It is the largest year round remote island community in Maine with a population of around 1200. We have a k through 12 school with a total enrollment of less than 200 students. My second son and I coach the Varsity Basketball team together.

I was born on the island and my family goes back 4 or 5 generations. I graduated from the island school in 1983. I moved away in 1991 with my wife and we lived on the mainland for 20 plus years. We made our way in life, made many missteps, and made many right choices. We were blessed with 4 wonderful, happy healthy children. Three boys and a girl. They are now 27, 24, 18, and my daughter is 15.

In 2015 an opportunity presented itself for me to return to lobster fishing and potentially move our family back to my hometown. After much debate, over thinking and more than one heated discussion, we made the decision to take the risk and make the move. It has been the best decision we have ever made. It wasn’t easy leaving the corporate world and the safety of a regular paycheck for self employment in an up and down industry at 50 years old, but I don’t regret anything and neither does anyone in my family.

Enough background, I could go on for another page or two and bore you to death. On to my Journey with cancer.

In the fall of 2019 I had a wisdom tooth because the lymph node on the right side of my jaw swells up excessively. Went to the doctor on the island, got antibiotics and an appointment with the dentist. They did an x-ray, gave me stronger antibiotics and a referral to an oral surgeon. The antibiotics took down the swelling and the tooth didn't hurt so I put it off. Not one of my best decisions.

In January of 2021 I noticed it swelling up again. I was doing clean up construction work on our house in central Maine so that I could get it on the market. So again put it off, another not so good decision.

About May or maybe June my family noticed that it was getting larger and pushed me to call an oral surgeon. I tried to get in with one that my wife had seen, hoping that the family affiliation would get me an appointment. They got back in touch with me in mid July to let me know the doctor was retiring and not taking appointments. Called the oral surgeon in Belfast, a bit further away, and got an appointment for October 15th. When she saw me and looked at the xray she told me it wasn't the tooth but that I had a growth of some sort in my salivary gland. She removed the tooth and strongly advised me to see an Ear Nose and Throat doctor asap. I contacted my primary doctor at the Clinic on Vinalhaven and asked that she set up an appointment with an ENT. She initially suspected a blocked salivary gland. My Dad took ill in the last week of October and passed away. That set everything back yet again.

On the 10th of December I saw an ENT at PenBay medical center in Rockport. He scheduled a CAT scan to rule out cancer. That happened on December 22nd. Results were that I had squamous cell carcinoma that had probably started somewhere near the base of my tongue and spread to my salivary gland on the right side as well as into the lymph nodes in my neck and one on the left side of my neck was more enlarged than the others. A biopsy was done to that lymph node to hopefully confirm the diagnosis and a scope was done at the same time to try and identify the probable primary tumor in my throat. The doctor didn't see anything at the base of my tongue so he wasn't sure where the primary tumor was.

He suggested maybe a PET scan but was hesitant to expense as at the time I didn't have insurance. I felt at the time that I was being means tested instead of diagnosed.

Waited 2 plus weeks for biopsy results that were inconclusive. My wife pushed and got the PET scan scheduled for the 10th of January in Belfast. Results were that the cancer was confined to my neck and had not spread to other parts of my body. Again there was evidence of a primary tumor near the base of my tongue. The doctor that reviewed the scan was of the opinion that I had lymphoma not squamous cell carcinoma. That tossed another monkey wrench into the process.

The ENT never called the lab that did the biopsy to find out why the results were "suspicious for squamous cell carcinoma". He wanted to put me under general anesthesia and do a biopsy of the back of my tongue in the tumor that he didn't find when he scooped me in his office. Also wanted to set up treatment consultations with an oncologist without a confirmed diagnosis.

At this point I had lost confidence in him. I contacted my primary doctor and requested that she set up an appointment for a second opinion in Portland. Portland is the largest city in Maine and has a very highly regarded Medical infrastructure. It is unfortunately a 15 mile ferry ride and an 80 mile drive away from home.

I came to the cancer center on western Ave. In South Portland on the 26th of January. Met with the oncologist at 1:30 for an hour or more as he listened to my story, my concerns, and reviewed my scans with me. From talking with him it was obvious that he had already reviewed them before my appointment. He stepped out for a second, when he came back he had set up a complete work up and biopsy with a cancer ENT that day. I also learned upon checking out that this doctor normally didn’t see patients on Wednesday’s but after reviewing my case had fit me into his schedule. What a confidence builder. His sense of urgency and willingness to rearrange his busy schedule for someone he had never met told me pretty much all I needed to know about the level of care I would be getting.

My wife and I left the cancer care center and went directly to the ENT appointment, arriving at 3:00pm. Mind you I had an appointment with the radiation therapist at 3:30pm for an initial consultation. We met with the ENT who again listened to my story, etc. She did a complete work up including a scope that identified the small primary tumor on my larynx and my tonsil, and 2 punch biopsies of the large mass on the right side of my neck. From there we went to the radiation therapy center that was in another building in the same complex. We got there just late but in time to complete the consultation. Again I told my story to the doctor. Had a check over and consultation with him. Then I met with a couple of care supporter staff that explained the resources available to my wife and I to help guide us through this journey.

Finished up there at about 5. As I was getting into the car I got a call from the oncologist asking if I could stay until Friday and have a central port installed at the main hospital. So on Friday I had the port installed at 1:00. At 12:30 my oncologist had the biopsy results that confirmed squamous cell carcinoma caused by HPV-16.

I Had my first 360 chemo infusion on February 5th. Had the last of three of those on the 18th of March. Had a very positive CAT scan on the 29th of March. Everything significantly smaller with no new spreading. Started 7 weeks of 5 day a week radiation therapy and weekly cisplatin on April 11th.

My prognosis is very good. My care team is very happy with my progress. I’ve had almost no nausea. I weigh almost exactly what I weighed on January 26th at my initial consultation. My blood work has been perfect. The fatigue has been hard but I have been able to work a bit in between chemo regimens. I work as a lobster fisherman so by work I mean heavy physical labor in less than perfect conditions. Winter fishing isn’t for everyone.

I’m anxious about the effects that radiation will have on my body and my ability to function somewhat normally as I continue down the path to ring the bell, but I will take each stage as it comes and work with the functionality that I have at the time. I have an amazing support system of family, friends and community. That has been enhanced by joining this group of amazing men.

Thank you for the opportunity to share and don’t hesitate to reach out if you need to talk or just need to vent.

Stay strong!