JWT - Volume XVIII
Joe’s Wolfpack Trailblazers
September 2021
The term 'Survivor' means 'A person who survives, especially a person remaining alive after an event in which others have died'. People expect you to think because you might have faced cancer and lived that you are a survivor.
It's a hard pill for many cancer patients to swallow, including myself. We are constantly reminded in multiple ways that we survived cancer and are left to feel we have done something heroic. Our friends and family believe we should be grateful we survived cancer and question why we may deny the term as it pertains to us. We are left with the guilt of the deaths of others in the cancer community and the PTSD of the surgeries and treatments that we endured to survive cancer.
For many cancer patients it's hard to embrace the idea of survivorship that has been given to us. Yes it is true that we have to find a way to accept the gift and embrace it. Unfortunately the directions that are given to us with this gift completely suck. It is much like the directions you are given with the furniture you purchase at Ikea. You are generally left with a mental picture of what survivorship should be, but no real written directions that make sense to you. At times you do understandably find the pieces just don't fit together.
I myself decided to return to therapy for a couple of months after becoming NED (No Evidence of Disease). I seem to fall into as much depression accepting I survived cancer as I did the treatment of the disease. The best advice I was given in therapy was to just give myself time to accept and embrace this life I had been given to live. There are no set rules to live your life after cancer has left your body. That has been something I have had to learn as I continue to live my life cancer free. I don't struggle with survivor's guilt as much now, I just miss my friends. I made the decision a few months ago that 'Cancer might be done with me but I am not done with cancer.’ I am also learning to pace myself and realize I can't be everything to everyone in 'cancerland'. I am still finding myself on the other side of cancer.
Over the last few months one of the greatest joys has been sharing the cancer journeys of the incredible men of The Howling Place group on Facebook. It was created by Trevor Maxwell as a place for men to gather emotional support in their fight with cancer. As Trevor has said 'We are changing the way men cope with a cancer diagnosis. The old way was for men to face cancer alone. The new way is for men to have community support.' That is what we are creating in the Howling Place group. This month I am pleased to share the cancer journeys of Clint Hartwig, Adrian Manning, Mark Everett, and Jason Abramovitch. Their stories are truly inspiring and I know will bring hope to others in the fight.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
Clint Hartwig
Clint Hartwig
Vancouver, Washington
Stage 2A Colorectal Cancer
Have you ever been in total darkness? I mean, so dark you can’t see your hand in front of your face. Now, imagine that same darkness being in your mind. It gets scary; Freddy Krueger meets Jason and Scream is scary. You are not yourself. At times it is like you are outside of yourself, but what you see isn’t you and you don’t know how to change. That is when the thoughts come.
I am an admin in the Howling Place group and write a #WellnessWednesday post and my last post I was going to talk about habits and how hard it can be to form new ones, but then I found out that the week (September 5th through the 11th) is National Suicide Prevention Week, with the month of September being National Suicide Prevention Month.
That topic is one that hits close to home. There has been a lot of talk about mental health lately and while some may snicker or look down at those who “just can’t pull it together”, unless you’ve walked through the darkness, like I mentioned earlier, you have no idea of the beasts that reside there.
It was back in 1983 or 84 that I was 11/12 years old, and without going to in depth about my growing up years, (let’s just say it involved the divorce of my parents, moving to a small new town and becoming an outcast at school, and an overbearing father whom I feared) I figured it would be better to be dead than to continue with this life as it was. I also believed that I didn’t deserve a quick death, but a slow and painful one. I have always struggled with my sense of self-worth. So, I tried a few different things and for various reasons “failed” at each attempt. My last attempt was the summer of ’85 when I was 13 and had just started back to school. After that failed attempt, I found a way out through faith or as Christians call it, receiving Christ. I was also able to get some counseling in my college years.
I had thought that was something I had put behind me. I dealt with negative thinking all the time, which got me the nickname Eeyore, but nothing completely as dark as the thoughts that went through my head during those preteen and early teen years. That is until wearing a mask became a requirement a year and a half ago. This post is NOT about the political side of this subject. The first time I put a mask on my face, I immediately had flashbacks to a couple of those suicide attempts. I have since been working through it, but the thing is it also opened the floodgates of those dark thoughts. I started immediately spiraling out of control mentally and very quickly settled into that mindset. Thankfully, I have reached out for help and assistance from various avenues.
To finish this up, let me share some quick facts for you.
⦁ 78% of all people who die from suicide are male.
⦁ Suicide is the 2nd leading cause of death among people aged 10-34 & the 10th leading cause of death overall in the US.
⦁ The overall suicide rate in the US has risen by 35% since 1999.
⦁ Research shows that people who are having thoughts of suicide will open up about these thoughts when someone asks after them in a caring way. By the way, the National Suicide Prevention Lifeline number is 800-273-8255.
Finally, if you are struggling with thoughts of suicide or that the people you love would be better off without you, PLEASE reach out. Whether it be to a family member or a pack member, you are not alone. It is like Trevor Maxwell says, we are stronger as a pack.
Adrian and Amy Manning
Adrian Manning
Zuni, Virginia
Stage 3 Adenocarcinoma of the Rectum
Adrian started with Newport News Fire Department in 2002. He was a young paramedic and was very excited to begin his dream career as a firefighter/paramedic for the city of Newport News. Passing all the tests and the academy was a real challenge for him since he was born with mild cerebral palsy and had weakness on his left side, but he persisted in training and practicing to assure he met every mark.
Adrian is currently a 41-year-old husband and father. His wife, Amy, is a registered nurse. He has two step-children, Christian (21yo) and Paul (17yo) as well as his daughter, Austyn (6yo). He has lived in Isle of Wight County on his small family horse farm for 11 years. In 2018 Adrian noticed some changes in his bowel patterns. He went for a routine physical in June and was surprised to find out he had blood in his rectum. He was sent for a routine colonoscopy about five weeks later. On July 6th, 2018 Adrian had the colonoscopy and the news was not good. The doctor said that, while the colon looked good, there was a huge mass in the rectum. He said it was highly probable that it was cancer. He biopsied it and Adrian would get the results in two business days. Adrian and his wife Amy went home in shock and waited the long weekend for a call from the general surgeon. Monday afternoon he got a call to come to Dr. Billings’ (colorectal surgeon) office Tuesday morning.
While most of that appointment is a blur, the main point was that the mass was cancer, and Adrian needed a CT-scan and MRI immediately to see how invasive the tumor was and to see if the cancer had spread to anywhere else in his body. He was able to get the scans done that afternoon. Wednesday morning he received a call from Dr. Billings stating he had stage 3 adenocarcinoma of the rectum. He had several enlarged lymph nodes in his groin and he also had 3 spots on the lung, but they were unsure if those were cancerous or not. The next two weeks were a whirlwind of doctor’s appointments and scans as well as surgery for a medi-port placement. The best treatment option for this type of cancer is radiation and chemotherapy followed by surgery to remove the cancer and a temporary ileostomy, then clean-up chemotherapy, and finally reversal of the ileostomy. Adrian was told to expect the entire process to take about one year.
The state of Virginia has a law called the Presumption as to death or disability from respiratory disease, hypertension, or heart disease, cancer (65.2-402) https://law.lis.virginia.gov/vacode/title65.2/chapter4/section65.2-402/ . On July 12, 2018 Adrian filed for workers compensation with the City of Newport News claiming the presumption law. Unfortunately, this law requires that the employee show proof that they have had contact with a toxic substance that can cause their cancer. “…having completed 12 years of continuous service who has had contact with a toxic substance encountered in the line of duty shall be presumed to be an occupational disease...” Adrian started reviewing fires and HazMat situations he had been involved in over the last 15 years of his career. He remembered an event from his academy class where they were potentially exposed to asbestos. He went to his employee files to find the documentation for that exposure and was unable to locate the information. The city looked through academy records and other files and were unable to locate this documentation. He reached out to others from his academy as well as the now retired captain that taught his academy class. The paperwork was located at the Regional Fire Office and through the Freedom of Information Act, Adrian was able to get a copy of the letter stating that he and his entire academy class were in a building with asbestos pipes. They were cutting holes in the walls and crawling through, potentially coming in contact with the asbestos wrapped pipes.
Fortunately for Adrian, he was able to find this documentation. Unfortunately for most firefighters, there is never any formal documentation or testing of fire sites or carcinogen exposure. While Adrian has probably been involved in hundreds of fire and HazMat calls, he has only this one documented exposure. Once a building burns down, no one ever tests the site for asbestos or other carcinogens that the firefighters are exposed to during the fire. It wasn’t until recent years that localities recognized that fire gear needed to be decontaminated after each fire. It was a badge of honor to wear your dirty gear proudly. If your gear was clean, you must be a rookie. According to an article in The Atlantic, “Cancer is the leading cause of firefighter line-of-duty deaths in the United States, and according to the International Association of Fire Fighters, about 60 percent of career firefighters will die this way, ‘with their boots off,’ as they call it.” This article also shows, “The extreme heat helps chemicals enter through the skin: With every 5 degrees that body temperature rises, skin absorption rates increase by as much as 400%.” https://www.theatlantic.com/health/archive/2015/09/our-toxic-homes/404722/
Adrian is still pending a hearing in front of the Virginia Employment Commission for a decision on if his cancer will be covered by the state workers compensation. It has been 6 months to date. The hearing has been rescheduled multiple times and the most recent reschedule has the hearing in March. He has had to retain a personal attorney to help in this fight. The city’s third party insurance company has declined to make a decision on the status of his claim and he will be forced to wait for the hearing decision. During this time Adrian is required to file two job applications a week to show that he is looking for alternative employment. All while working full time in a light duty position for the City of Newport News and fighting cancer. He has also been asked by the city attorney to provide a list of every doctor he has seen in the last 15 years, and any research articles he has referenced.
Adrian has been able to work light duty at the Fire Department in the City of Newport News since his diagnosis, but has not been able to work his part time job as a paramedic in Isle of Wight County. He is also not receiving the built in overtime pay that he would be receiving if he was working full time in the fire station. n November 2nd he received notice that as of Aug 31, 2018 he had exhausted his FMLA. This means that he has no job protection by law, and could potentially lose his job and his health insurance. He may be forced to take a leave of absence without pay.
There are so many things that can be done to mitigate the risks to our firefighters, but they do require financial commitment by localities. Gear should be thoroughly decontaminated after every fire. It is recommended that every firefighter have two full sets of turn-out gear to make the decontamination process easier. Very few localities have purchased these extra sets of gear. The seats in the firetruck should be non-permeable. Cloth seats hold the carcinogens and are not typically cleaned adequately to mitigate the risk. An article on FireRescue1 states, “scrubbing turnout gear with soap and water can reduce PPE contamination by 85 percent…” Safety Officers should supervise the decontamination of each firefighter after an exposure on scene. Localities should test sites for common carcinogens and document exposures for each employee exposed. As soon as the firefighter returns to the station they should immediately shower and change into a clean uniform.
As you can imagine, all of the fight for benefits and job protection has put a huge strain on Adrian’s family. Localities require their public servants to respond in dangerous situations and not hesitate to save citizens lives, yet when the firefighter needs saving they are left to jump through hoops and stress over their ability to provide for their family. Adrian and his family ask that you share their story. Please reach out to your delegates, senators, and congressmen to make the changes to protect our public servants. According to a study by the CDC in 2013, firefighters have a 9% higher risk of being diagnosed with cancer and they have a 14% higher risk of dying from cancer then the general US population. Help us prevent another firefighter from having to fight to get the benefits they deserve while fighting for their life. God Bless!
Adrian Manning
(757)508-3506
Amy Manning
(757)870-7512
Mark Everett and family
Mark Everett
Spokane, Washington
Stage IV Colorectal Cancer
I am a husband, a father, a beer man by trade, a cancer patient and a follower of Christ. I am an open book. I tell my story to as many people as possible in hopes of helping at least a few to get that problem checked out that has been bugging them. To listen to their wives and loved ones. To listen to what their bodies are telling them. In hopes that I save a life and someone else’s family doesn’t have to go through what mine has.
My cancer story started in February of 2020. My wife and I took a trip to San Diego together without kids for the first time in almost eight years. I felt like crap most of the time we were there. Within a week of returning I was losing strength, stamina and energy. I had no appetite. I started passing blood. I scheduled an appointment with my GP. He scheduled an emergency colonoscopy. We were looking for Crohns or something like that. He said it could take a couple of weeks. They had me in within a few days. March 6th, I go in and we scheduled follow up appointments for the next week. The GI doctor comes in and says we don’t need follow up appointments. He found a mass in my colon and removed several polyps. My world went silent. We can beat this with some chemo and surgery. We scheduled a CT scan, a surgeon and an oncologist. The surgeon breaks the bad news. The cancer had spread to my liver. My liver is mostly filled with cancer crowding my other organs. Surgery is out on stage 4 colon cancer. My oncologist had even bleaker news. Two months without treatment to two years with. Are there any other options, she tells us no. At some point it comes up that this has probably been growing in me for about 10 years.
I’m devastated. My wife lost her first husband at a very young age. My 3 oldest kids, his kids, already lost one dad the oldest was six the youngest not even 1. Our two daughters are together. Six and 4 they will be in the same boat. None of them will understand.
I started treatment and everything is looking good on my first scan. Then I had a bad reaction to Folfox chemo. It sent me into anaphylactic shock. Plan B Folfiri. Results slow on each CT scan but still everyone is amazed at how my body and the cancer is responding to the chemo.
My wife begins searching for alternatives to what my oncologist referred to as keeping me comfortable until I expire. She finds several options. Resection and pumps don’t look like a great option but we find several doctors willing to look into it. Then Dr. Hernandez reached out to us about a live donor liver transplant. This sounds promising. We begin to explore this option further. Other appointments are canceled and we move forward with the transplant process. We put out the call to friends and family for a liver donor. The response is overwhelming. A good match is found on the 1st donor applicant. A woman that I have known since she was about 7. An amazing person and story for another day. We move forward with my colon resection. 14 inches of my sigmoid colon are removed in May 2021. The surgery and recovery went better than expected.
I start mop up chemo and start looking for insurance approval. Now the real battle starts. Surgery is scheduled for August 23. We loaded all the kids up on August 9th to make the 2500-mile drive from Spokane, Washington to Rochester, New York. Still no approval. My oldest son, now 17 asks what happens if we get there and they won’t approve of it. I tell him we don’t know and haven't really considered that an option. He takes that answer. Less than a week to surgery still no approval. Multiple appeals later and finally we get approval. A few appointments and a final CT scan and we are a go. But wait what is this lump in my lung on the most recent CT. A blood clot. I’m admitted to the hospital for a few days to observe and take blood thinners. Possibly surgery complications due to blood thinners. They explain the pros and cons to my wife and I and leave it up to us on if we continue or not. We choose to continue. I was released for a few days before surgery to spend with my family. That’s when I found this Wolfpack - the Howling Place group.
I am happy to say the surgery was a success. I was released almost two weeks ago and the family and I are doing well in Rochester for a few more weeks while I am being monitored. We are hoping to return home by the end of the month.
If you read this far, I want you to know a few things. First the treatments are different for everyone. I was sick 7 to 10 days out of 14. I know other people that are up and working everyday including treatment day. Second, don't let the diagnosis ruin your life anymore than it already has. Keep living, loving and going. Third, speak up there are more people there for you than you know. You are loved even if you feel alone.
Jason Abramovitch
Jason Abramovitch
South Mountain, Ontario, Canada
Stage 3 Colorectal Cancer
Prior to diagnosis I was a very healthy and active 36 year old male, and for the most part, always involved in activities to help others such as volunteering with Victim Services, teaching Yoga to the public (but specifically first responders and front-line workers to build resilience to avoid/ recover from mental health injuries), and of course, always looking out for those close to me!
Like many of us younger folks, I had very minor symptoms, but as I used Dr. Google (not recommended) my intuition was telling me something wasn’t right. After a few months, I decided to go see my family doctor. She was extremely supportive and was not overly concerned as I was “young,” but offered to book me in for a colonoscopy which I accepted.
The procedure was still two months away as it was not urgent, however in late November 2020, my symptoms increased and I decided to go to the ER on a Sunday evening to get checked. The ER doc was pretty convinced it was due to inflammation in my colon and ordered a CT to confirm. The next morning, I had my CT and waited in the ER waiting room for my results. In all honesty, I was not nervous or scared as the doc seemed confident it would be a fix with some meds and change of diet, etc. My name got called and as soon as I saw the doc I knew something was up.
He escorted me to a private little room with my test results. He let me know they saw a mass in my sigmoid colon and some lymph nodes that were considered possibly malignant. Later that day I had an emergency endoscopy to do biopsies and several more scans.
The next week waiting for the biopsy results was the most agonizing. Even though I knew deep down it was cancer, waiting for that phone call was the worst! Friday afternoon my doc called with the news I was so fearful of that it was in fact cancerous.
At first I was completely shocked, angry, scared, furious, confused, and most of all, I thought, “How did this happen?” “Why me?" I have been under the amazing care of the docs and nurses at the Ottawa Hospitals Cancer Center. In February 2021, I underwent a successful major abdominal surgery to remove part of my sigmoid colon. After eight weeks of recovery, I started chemotherapy biweekly for a 12 cycle protocol over six months.
I have both physical and emotional side effects. Prior to my diagnosis, I had anxiety and PTSD so I had become pretty in tune and familiar with the effects of stress on the body and mind. Once diagnosed, some old more intense symptoms such as panic, fear, tension, and confusion were most prominent along with physical symptoms like headaches, muscle tension, and skin rashes.
Post-surgery was both physically and emotionally challenging for me! I literally was fighting a fire for three days pre-surgery at work, and post-surgery, I was hardly mobile and needed all kinds of help for simple daily tasks. This was a huge confidence and self-esteem blow for me as I have always been the “helper” and now needing to accept help was really tough.
Mentally, as the days passed during recovery, I slowly became frustrated with my fatigue and lower strength and endurance and had to quickly adjust my expectations and be realistic of my current temporary limitations. I am currently on cycle 11/12 of chemotherapy and side effects have mainly been fatigue, cold sensitivity, and neuropathy.
Life after cancer
Physically, I have had to readjust goals and expectations depending on how chemo is affecting me, as well as the all-around physical stress of going through a journey like this.
Emotionally, I have had a new outlook on life and where my priorities, time, and efforts are spent.
My diagnosis and treatment have not really affected my social life due to COVID, but I have been keeping my regular communications to select family, friends, and coworkers.
Spirituality has been a part of my life for some time now, and my cancer experience has increased it dramatically. I have always believed that there was more out there than we see, and I can honestly say I have experienced some incredible things spiritually since my diagnosis!
By far, the toughest part for me has been going to the cancer centre for appointments and treatments and being the only young person in the room surrounded by older folks who stare at you like you do not belong. People’s reactions when I tell them about my diagnosis are tough as well. The usual response of, “You’re so young and healthy; that makes no sense!” got old very quickly!
I decided very shortly after my diagnosis that I would not let caner define me; it is only part of my story and not who I am. In addition, I made it a goal to help people going through this journey and provide support and motivation to help them keep going forward. Most importantly, amazing family and friends support has been key! As well as support from YACC and Man Up to Cancer have saved my life!
My diagnosis has made a lot of my relationships stronger as I slowly start to feel comfortable accepting help as this is something I have always struggled with being in a professional helping role. At times it is tough not wanting to be the “ill” person, but my own perspective and mindset have helped me navigate that.
I have found the best way to navigate relationships is being honest about how I am doing and knowing I do not always have to have a strong front on when I am having a more difficult day, as well as keeping those close to me up to date on my medical status. This has helped avoid a lot of people asking questions, as they already know the info.
My body image was affected after surgery when I had scars and staples and weight loss. It was difficult to see myself like that, but I also knew it needed to be done to get the cancer out and I would eventually heal.
I have also been a little bit self-conscious of my PICC line and having people stare or ask what it's for. Luckily this has mainly been a mental hurdle for me as with COVID I really don’t see many folks who don’t know me.
My new daily goals are to do something outside everyday and meditate when needed. Realistically this doesn’t always happen due to being tired or not feeling well, however I am learning to adjust my expectations.
I am a big fan of Green Day, Blink-182, Billy Talent, Rage against the Machine, and Metallica for my treatment day music. It gets me in the mindset to go into treatment strong and upbeat as well as giving a big “F*@# You” to cancer!
I would like others to know that they are not alone. Their experiences, feelings, fears, and all the other struggles that come along with cancer are valid. Although there is unfortunately not much out there for young adults dealing with cancer, supports and organizations such a Man Up to Cancer and YACC do exist. Please take advantage and join these communities as you will find much comfort and relief by meeting people who you do not need to “explain things to” and who “get it.” That is a game changer!
Most importantly never give up, one step at a time, no matter how small, keep moving forward!