JWT - Volume XIX
Joe’s Wolfpack Trailblazers
October 2021
I had a bit of nervous energy recently the day my friend Trevor Maxwell went into surgery. It had been a goal to get him to surgery since I met him two years ago. I was thinking about why he created The Howling Place Group. It made me think of my grandfather. I had forgotten about the days I had spent caring for him at the end of his life. I had not really thought about this since before I was diagnosed with Stage 3B colon cancer. I think over time I might have blocked it out.
I was a freshman in high school and I asked my dad if I could get a job at the local fast food restaurant that had opened. He told me no because he needed me to help care for my grandfather who had fallen ill. He had a form of illness but I can’t remember what the diagnosis was. Every evening I would carry a plate of food that my mom prepared for him to his house across the field. I would sit with him to make sure he didn’t choke on the food and we would watch the news together. I would leave after he had fallen asleep.
I would do this everyday for a few months till one day I came home from school and found out he had died. There was not much that was said of his passing and he didn’t want a funeral. My Dad just said he died and I could go apply for that job now. At my wedding ten years later my Dad would hand me a deed to the property my grandfather left for me as a wedding gift. I would build my home on that property and I would raise my family.
There was definitely a denial of health related issues in my family. There was a mistrust of doctors that would carry throughout multiple generations. I had found out my Dad had been denying a prostate cancer diagnosis that he had received many years ago. That caught up with him a few years later and he suffered for it. My Mom had her own health issues with heart Disease and had refused a much needed heart bypass surgery. If they had listened to their doctors they might be here today. I think I had even fallen in the same pattern of putting off my own healthcare. I think when you are under the age of 40 you really don't think about getting cancer. Things would hurt inside your body and you just seem to ignore the pain. It's a common practice especially among younger men. My wife was the one that generally urged me to go to the doctor and It's that urging that probably saved my life.
A few of you know the history with my Dad wasn’t great. We didn't agree on much at times. If I am honest we are probably a lot more alike than I want to think. I put a lot of those feelings aside to care for my parents at the end of their lives. A week before my Dad died from the late stages of prostate cancer I would share with him a few of the symptoms I was having at the time. He asked me if I had seen a doctor. I told him it was just stress and I would be fine. He said ‘Please don’t be like your grandfather and me. You need to seek help for those symptoms. If I had done that I might not be here today.‘ He regretted being so close minded with the doctors. If He had listened to them It might have prolonged my life. A few days later my Dad died at a local hospice center.
After once again opening up to my wife, I set up an appointment with my doctor to talk about the symptoms I had been having for a few months. I had been having blood in my stool, irregular bowel movements and daily fatigue. My doctor ordered a colonoscopy to investigate what might be happening to me. Two day before my colonoscopy my Mom died of a massive heart attack. I remember the morning before she died I told her about the colonoscopy I had scheduled. She was glad I was getting care for those symptoms I was having at that time. The next day my mom died I canceled the colonoscopy. It would be months before I would reschedule it. I just didn’t want to deal with it and just ignored the symptoms.
Was I just falling into the same patterns of the rest of my family? Even my siblings refuse to seek the care of doctors. I was happy my younger sister got a colonoscopy. It turned out she had a couple of precancerous polyps removed. Thank God she listened to me. It probably saved her life.
I was officially diagnosed with stage 3b colorectal cancer In May of 2018. I would have surgery to remove a tumor from the sigmoid region of my colon along with 40 lymph nodes. Three were cancerous. I would endure six months of chemotherapy (oxaliplatin and Xeloda). In February 2019 I was told to be NED (no evidence of disease). During treatment I did seek out therapy at the urging of my oncologist and my wife. I think it all had become too much emotionally and I suffered a lot in silence. No one should fight cancer alone as a patient or caregiver especially after losing your parents so closely before diagnosis.
For months in therapy I wonder why men like my grandfather, my dad and even myself would fall into these close minded patterns that would directly impact the healthcare they received. I am thankful I had a wife that urged me to get emotional support through therapy while I was in treatment. I was not only dealing with a diagnosis and treatment of cancer but I don't think I had fully grieved the loss of my parents. It would be months before I would break through the depression that cancer had brought to my life. I continue to go to a local support group to offer help and support my survivorship.
A year later I would receive a message from Trevor Maxwell about starting the Howling Place group. He wanted it to be an emotional support group for men fighting all forms of cancer. He wanted to build a community that men could gather together to offer emotional support to one another during their personal cancer journey. He asked if I would help him. It's exactly what I needed to support this next chapter of my survivorship. I had spent months reaching out to men on facebook to gather support in my own cancer journey. I thought it would be a great opportunity to bring these men together to support one another in the fight.
On January 1st 2020 we opened Man Up to Cancer - The Howling Place group on Facebook. Today we are over 1200 men strong. Having an ‘open Heart and a warrior spirit’ was the goal and learning to ‘KFG ‘ together was the plan. Thank you Trevor for creating a safe place for men to share their cancer journeys and get emotional support from one another every day. Our thoughts and prayers are with Trevor, his wife Sarah and his daughters as he recovers from surgery. I know he will be ready to ‘Shoot The Shit’ as he describes it in no time. Love to all the brothers enduring treatments and surgeries at this time in the group. Thank you for opening your hearts everyday in the group.
I truly enjoy sharing the cancer journeys of the men of The Howling Place Group. This month I am sharing the cancer journeys of Steven Westphal, Brian Brave and Adam Chamberlain. Thank you for continuing to let men know they are not alone in the fight and definitely KFG!
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
Steven Westphal
Steven Westphal
Filer, Idaho
Stage IV SCC oral cancer
My name is Steven Westphal. I'm 66 years young and I’m a stage 4 SCC oral cancer survivor. I wish to dedicate this story to my wife, Cynthia, who has never left my side and to my family who has been with me through this journey, and to my faith in God that has never wavered.
In 2014 I started to notice that something wasn't right with my body. I had run out of energy and I was just lethargic most of the time. I didn't think that I needed to see the doctor and I probably was just working too hard. I woke up one morning and I didn't know where I was. Cynthia loaded me up and took me to my doctor who had been seeing me for the past 20 years. He tested my blood sugar, as I'm a type 2 diabetic and it was 27. The nurse juiced me up and we were sent to the hospital for a kidney test and they were barely working.
After receiving food and medicine, my kidney function came up enough to send me home. More test were ordered along with a colonoscopy and endoscopy and several blood tests. My blood test showed that everything was off the scale but the doctor's couldn't pinpoint what was wrong with me. I started to feel better and my doctor felt like the blood tests showed a symptom called Hemolytic Uremic Syndrome, a food borne illness.
Fast forward to 2018 when I noticed that i was dizzy, especially when I got up on a ladder, which was my work as I have been an electrician for 40 years. I also noticed a small white spot under my tongue. I was seeing my dentist to have some old fillings replaced and I thought that he had pinched me under my tongue. I had an appointment with my doctor for my annual checkup and when he looked in my mouth, I knew by the look in his eyes that something wasn't right. He referred me to an ENT, who I went to see the next day for a biopsy. He said that I would hear from him in 10 days with the results. Two days later he called and asked me to come in with and I should probably bring Cynthia along. I went by myself and he was right to the point, the biopsy showed a very rare and very aggressive Squamous cell carcinoma under my tongue and that the only hospital in The N.W. that could remove it and save my life was the Huntsman Cancer Institute in Salt Lake City, Utah. They were on the phone that afternoon and my surgery was set for September 13th 2018.
We arrived on the 10th for tests and to meet my team, 24 of them! Dr. Hunt, my surgical ENT oncologist explained what was going to happen and the odds were not in my favor but the alternative was unacceptable because I had a lot of livin to do yet!! The 1st surgery was on September 13th, with 3 surgeons and it went for 15 hours. My tongue, jaw and 59 lymph nodes were removed and I had made it into the ICU. I don't remember much after that but I had a procedure to install a G tube and a trachea tube and another scope into my stomach because of internal bleeding. Cynthia came down with a bad case of the flu and was out of commission. We had rented an apartment for her to stay in while I was in the hospital. She pulled through and was with me everyday for as many hours as the nurses would let her. That was an absolute God sent for me, just having her by my side all of those days.
After 5 days I was moved from ICU to a patient room for the next 29 days. The wound on the left side wouldn't close because the stitches inside my mouth wouldn't hold together. All the while I was in the hospital I was teaching myself how to talk again. Dr, Hunt had told me in the beginning that I might lose my ability to speak and being a married man, I couldn't possibly let that happen, LOL.
Each day I seemed to get a little better and on 10/4/2018 I was moved to a hospice called Promise. I had no idea why I was moved because I was heavily meditated but Cynthia was aware of what was happening. I had been sent there to spend my final days. It wasn't going to happen. Cynthia spent every waking minute there making sure that I was receiving proper care and on 10/12/2018 I was only the 2nd person to walk out of that floor of Promise in 5 years. We headed home the next day.
I had 3 months of home health care and rehab along with 32 radiation treatments. More speech therapy and lymphoma therapy and another colonoscopy just for good measure. On 11/5/2019 I was sitting in my easy chair at home when I became ice cold and I couldn't function. I was alone and I couldn't keep my legs under me so I crawled to my bedroom and passed out. The boys came in and found me and Cynthia took me to the hospital emergency room where I had a 104 degree temperature and they couldn't get me cooled down but at the same time I was freezing!! I spent 4 days there diagnosed with sepsis, dodging another bullet!! On 2/3/2020 back to the hospital this time with MERS. Back to the Huntsman to have the hardware removed from my right jaw. 4/29/2020 I woke up with shingles all over my upper torso.
I was on the schedule to have another surgery to replace the bone in the right side of my jaw but after having so many infections my doctor ordered 40 hyperbaric oxygen treatments. The closest place for that procedure was Boise Idaho 120 miles away. We took our motorhome over
there for the 2 months of treatments. On 12/22/2020 I had surgery to have my remaining teeth removed. On 1/14/2021 I was back at the Huntsman for another 15 hour surgery to rebuild my prosthetic jaw, this time with bone and skin from my right arm. I was in ICU after surgery, the team came in to have me stand and walk and the next thing I knew I was looking at a room full of people from the outside of the 5th floor windows. I guess that I had an out of body experience and I was in another dimension. Cynthia just walked in and the room was full of people all in a panic mode. All of the machines that I was hooked to went silent and the alarms didn't sound off. My blood pressure went to nothing and I was floating in a very peaceful place watching everyone. That got them all excited, LOL!!
Headed back home after 7 days in the hospital, this time with a feeding tube through my nose, not fun at all. 2 months later we're back at the Huntsman for the tube removal and everything is healing the way Dr Hunt expects it to. My body doesn't like the hardware and rejects it so another surgery as planned for 7/7/2021 to remove the hardware from the left side of my jaw but Dr. Hunt noticed a lump and did a biopsy and canceled the surgery until he was certain what we were dealing with. A CT and PET scan was ordered and everything came back negative, Thank God!! My last surgery was on 9/20/2021, a 4 hour procedure to remove the hardware on the left side of my jaw.
I haven't eaten any solid food since my first surgery but I don't have the feeding tube anymore and I'm working on soft foods now. I take 28 pills a day every day, that I have to grind up and mix them in my liquid food drink. I eat 5 pounds of honey a month. I'm looking forward to being healed enough next year to have dental implants installed to hold a set of new teeth.
I am grateful to be here and to be a part of the "Pack". I know that I wouldn't be here if God didn't have a plan for me and I hope that by sharing my story that it gives someone else hope to know that we can get through this. I have been NED no evidence of disease since 3/20/2020
Thank You
Steve Westphal
Brian Brave
Brian Brave
Durham, NC (2 miles from Joe Bullock)
Stage IV kidney cancer
I was first diagnosed with kidney cancer in April 2006. My right kidney was removed in late May and my only follow-up was getting a chest x-ray and following up with my urology doctor annually. In early December of 2017 I signed up for a group long distance bike ride from Baltimore to Key West (Key 2 Keys) with the Ulman Foundation.
To be clear this is a relay and I didn't bike the entire distance. The Ulman Foundation supports young people who have cancer and everyone who takes part in this ride has some connection to cancer. It was something when I signed up for that I didn't know much about or anyone who had been or would be going. It was something I have wanted to do to honor my brother, Scott, who had passed away from pancreatic cancer 25 years before at the age of 34.
Also, in December I had my annual follow-up with my urologist. He changed up my protocol and I had my first CT scans. On December 23rd I found out in my Duke MyChart account that I had three small spots on my pancreas that were found to be linked to my kidney cancer. I started immunotherapy treatments in January as both my oncologist and wife both sternly told me NO to waiting to start treatments. We did schedule my monthly treatments around the 8 days I would be gone. I was lucky as I was able to continue to work and train for the bike ride, I knew very little about it.
In late April I met the 43 people I would spend 8 days with. Since everyone had a connection to cancer,! shared my cancer story to the group in a Facebook group that was set up for us. I'm sure that sounds familiar to you all. I don't want to go into detail as that is an entirely different and much longer story. This group very quickly became my support group for those 8 days and I continue to receive their support today. An expectation for this ride is to tell your story to the group you are riding with and the two support drivers. Something that wasn't easy at first but everyone goes more in depth as the journey continues and they retell their stories. Let's just say there were lots of tears, laughs, hugs, and memories that I will never forget. I hope the Man Up to Cancer Group can someday soon spend some days together.
When I returned from the bike ride, I worked one day and then took a day to get blood work, scans, to meet with my oncologist to review the results and to have my next treatment. I was very fortunate as I found I was in remission after 4 treatments and 6 months after my cancer was found. I'm not sure who was more excited, my oncologist or my wife and I when he told us.
I finished up 7 more treatments and remained in remission for almost 2 years. Since then, I have had spots show up again on my pancreas twice. The first reoccurrence was in December, 2020 and I had five high dose radiation treatments in January, 2021. Luckily, the most recent spots found in June of this year in the CT scan were too small to do anything with so I will be getting scans again in early October before any decision can be made on what action to take.
Since my cancer returned in December 2017, I have had a lot of side effects from the treatments that have limited some of my activity. Also, since my cancer has returned, I have celebrated 4 birthdays with my granddaughter, my grandson has been born and I have celebrated two birthdays with him, my son has graduated from college and completed training to be a police officer, rode Key 2 Keys again in 2019, rode in the Victory Ride this year, and so on. Moving forward, I try to KFG, walk with Joe Bullock at least once a week, and to keep making memories - like my 39th wedding anniversary on October 23rd.
Adam Chamberlain
Adam Chamberlain
Fredericton, New Brunswick, Canada
Stage II Breast Cancer
In August of 2017, I summited the tallest mountain in Idaho for the Solar Eclipse with a group of adventure enthusiasts. Two months later, I was diagnosed with Stage 2 Breast Cancer. My journey to diagnosis, like many men, was not an easy ride. It took over two years of investigating for the right test to get completed and for my team to figure out what was going on.
My symptoms were very mild, other than having an itchy nipple, there wasn’t much on the outside that looked or felt out of place. Even in the early stages of my testing, I never really put much thought into the off chance that it was breast cancer. For what it’s worth, men only make up less than 1% of all breast cancer cases, and the average age being much older than myself at the time. I have learned to appreciate this statistic and look at what I believe is the bigger picture, that over 5000 Canadian Women lose their lives each year to this disease.
I get asked a lot what it’s like to be a male breast cancer survivor, and I always have the same answer. DAMN LUCKY! In the beginning, I was really distraught about the lack of services for male breast cancer. I felt like my medical team let me down for missing it. I felt like there were no social programs available. I generally felt like I was alone. I believed that I could only relate to other male breast cancer survivors, and that the system was broken for us. Don’t get me wrong, it was very important to connect with other men that have this disease, but it was also equally important to connect with women who have always had to look over their shoulder for this silent killer. Once I stopped sexualizing the disease, I was able to connect with the right support groups and learn to be my “new” self.
I do my best to be as involved in the Breast Cancer Community as possible. One group that I am part of is a Survivor’s Dragon Boat team that gets together to compete in international competitions. I was at first nervous about how I would be accepted by the other members. I am the youngest person on the team, and I am the only male survivor. My worries were short lived though. I will never forget my first night on the lake when one of the ladies said to me “Hey Adam, how does it feel to have 40 more moms.”
My first experience meeting other young cancer survivors was with a non-profit called “First Descents” which provides free overnight adventure camps all across America for young adult cancer survivors. I was flown to Oregon and went white water kayaking for 5 days through the Rocky Mountains with about 2 dozen other survivors and volunteers. While there, I learned that many of the challenges that I was facing were also a reality for many others.
This is also where I first got to meet other breast cancer survivors. I was really awkward in the beginning when it came to participating in the breast cancer community, as I felt like I would make someone uncomfortable, or I would somehow take away from their experience. I could not have been any more wrong. Shortly after my arrival at Cancer Camp, I was lifted up on the ground and given a hug that I will never forget from another survivor, who said that we were “Breastie’s”.
Someone once called me a unicorn. When I asked why, they replied “people say that men can get breast cancer, but you never see them in real life.” When I finally stopped feeling sorry for myself, I started to think about how I could help other men in the most effective way possible, men who were not as lucky as I was to detect it early. I realized that the best thing I could do for my community was to share my story and to help bring awareness to male breast cancer, and that it was okay to talk about it. I have had the opportunity to share my story on stage to 1000’s of people in hopes that maybe someone will notice the warning signs early and win their fight. Men have a higher breast cancer mortality rate than women because they are not detected as early. Don’t be a Unicorn!
The biggest change to my personal life since being reborn as a survivor is how it has positively affected not only myself, but also my friends and family. Turns out, when you have been diagnosed with cancer, people have a hard time saying no to you when you’re fundraising. Most recently, me and a friend completed a 250-mile 8-day marathon across our province for Make-A-Wish raising $37,000. We borrowed a page from Terry Fox (seriously look him up if you don’t already know who he is) and walked an ultramarathon everyday while collecting pledges. I should mention for context that I am not an athlete.
I would never consider myself lucky for being diagnosed with Cancer, but I am very grateful for what it has taught me. I feel like I have lived more in the 4 years since my diagnosis, then the 31 years leading up to it. I am a happier person, and a better member of the community, and feel like I am the best version of myself today. I would like for everyone to have the same experience that I did, but I know that is impossible. I will, however, do what I can to help make their day a little brighter. When life hands you lemons, cut them off and make lemonade…. Or something like that.
This would not be complete without saying thank you to all the wonderful Breast Cancer Survivors and supporters that have made me feel welcome in the community. I would not have been able to get to this point without your continued support and encouragement. Thank you for including me and thank you for not making it weird.