JWT - Volume XXVII
Joe’s Wolfpack Trailblazers
July 2022
I remember the first few days after being diagnosed with stage 3b colorectal cancer. I was sitting in a chair reflecting about what was about to happen to me. One of my first thoughts wasn't about the cancer itself, but that I actually had no one to talk with about it.
My family was supportive but really didn't understand how I felt about being diagnosed with cancer. I didn't want to be a burden on them because I knew what was ahead for me. I would be at work with a room full of people and feel totally isolated because of my cancer. It was almost like people were talking over me about my cancer. I could sense they were trying to figure out what to do with me but not really asking me about my cancer.
Don't get me wrong, I had a very supportive work environment but no one really understood what I was going through at the time. I was a middle aged man with little or no male friendships. I had lost touch with many of my high school and college friends. A few of them had heard about my cancer diagnosis and sent me notes or messages of encouragement. I had people who offered to support my family in many ways but I felt very detached from everyone at the time.
As the months progressed while I was in treatment for my cancer, I would seek emotional support through a therapist at my local cancer center. I found that having someone to talk through my feelings about being diagnosed with cancer was helpful. I started to go to a local cancer support group and to meet other cancer survivors. I have to admit in the beginning I felt a bit uncomfortable opening up in the larger group. One thing that was lacking in the group were the men. I had gotten great support from the women in the support group, but still wondered why so few men participated. One woman named Erin Duffy Wood even helped me find many of the friendships that I have in the cancer community today. Honestly it was hard finding men to talk with about my cancer journey even in the local group.
When I first joined Man Up to Cancer’s Howling Place group, like many other men joining the group, I wasn't sure what to expect. The plan my friend Trevor Maxwell had laid out to me was pretty simple in what he was creating with Man Up To Cancer and the group. He had a 'Build it and they will come' type of attitude about it. We knew the men were out there who needed emotional support fighting cancer, but we just had to find them.
As men joined the group, it reminded me of when you first joined that athletic team in school as a kid. In the beginning, you spent time sizing up each player on the team and trying to figure out who had your back in the game. You would wonder who's going to help you get that ball down the field, help you set up the next layup shot in the net, or get you across those bases. It's what we have learned that some men are wanting from each other in the fight with cancer. They have chosen not to live in isolation because of their cancer treatments, but to depend on one another for emotional support. That's what The Howling Place group has come to offer its members and myself. As Trevor always says 'We are stronger together as a pack.'
In a few weeks we will get the opportunity to come together as a Wolfpack and celebrate our survivorship together. It will be a gathering of about 60 men of the Howling Place group. We have spent the last two and a half years sharing our cancer stories and gathering support from one another in the group, including many zoom meetings. The men are excited to meet in person at our first 'Gathering of Wolves' event in September. The registration of the event is currently closed for this year but we are hoping to make it an annual event for the group. It will be a great opportunity for the men of the group to come together, Howl and do those many things we only were able to do virtually. I am excited to share the thoughts of a few men who will be participating in the event this year.
Thank you to David De Wilde, Gregory Brown, and Jay Jay Abramovitch for contributing to this month's trailblazer article. These men are some of the most active members of the group. I have never met them in person but I feel like I know them because of the many times we have interacted in the group. I am looking forward to meeting each of them in a few weeks and offering them a handshake or a long awaited hug.
— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)
David De Wilde
David De Wilde
Sint-Niklass, Belgium
Testicular Cancer Survivor
I’m David, one of the few pack members on the other side of the Atlantic. I am 38yo, married for 16 years with Annelies and we have two kids of 15 Ayla and 13yo Rowan. I was diagnosed with testicular cancer when I was 36.
I am an MA in Archaeology and Art-historian by education. I had been doing scientific research for many years at Brussels University (Belgium), until health issues forced me to stop working. You could always get me talking for hours on prehistory, art (especially sculpture), or recorder playing.
My cancer-story started early September 2020. I was doing a regular testicular self-exam, suddenly I could feel there was a hard lump that felt rather substantial. This had me concerned, but initially not alarmed. After a couple of days, where it obviously didn’t go away, I decided it was time to see my GP and I found myself all nervous in his office. Yes, this is indeed the part where your doctor asks you to drop your pants and lie down ‘comfortably’… but to be honest, he was more than understanding and surprised I was so open about it. He compared both testicles and then he confirmed that ‘mr. rightie’ was atrophying and did indeed have a hard painless lump inside. It was real, and not just my imagination… We went to sit down and had a long chat. My doctor explained to me that a hardened, painless part in the testicle is a warning not to be ignored but in desperate need of further examination. I urgently needed an ultrasound to make the definite diagnosis. He picked up the phone himself to make an appointment with a urologist the very next day.
I had never been so nervous for a doctor’s appointment as the one on September 11th. The meaning of 9/11 was about to change forever… I had never seen a urologist before, and the waiting in the doctors waiting room, all alone because of COVID 19, was just plain hell! Now this is where the emotional rollercoaster really started. The ultrasound was unforgivably clear, there was an obvious mass in my testicle. Even I could distinguish it as something ‘wrong’. The urologist didn’t beat around the bush, he told me with a plain face: “this doesn’t look good, and it has to come out asap”. All of a sudden it was real. There you are, you have testicular cancer... From that moment I entered some strange mental state, I felt absent the following days, they were filled with labs, scans, etc. but I just lived in a haze, not sleeping at night, and being a zombie during the day.
On Tuesday 22nd of September the “big day” was finally there. I’ve had multiple surgeries before, so I kind of knew the drill. But for this one, I was extremely anxious, after all I was going to lose one of my testicles because of the big bad C. But the hardest part was facing this all on my own, without my wife to support me because of corona, COVID-19 made dealing with cancer so much harder.
As I woke up, I was in tremendous pain, the doctor told me it was a minor surgery, so I wasn’t prepared for this. The first time going to the bathroom was rather uncomfortable I must admit. That night in the hospital was quite horrible. I even called the night nurse, because in the middle of the night I had an experience which made me freak out! My entire scrotum had suddenly turned completely black. It was quite the panic. But when the nurse came, she assured me it was all completely normal. Washing up the next morning, even with a nurse’s help, was yet another excruciating experience to me. They changed the dressing on my incision and after the doctor came to check up on me I was discharged. Glad to be back at home, but still rather tired and sore.
Then comes the everlasting waiting game, which seems to be an inseparable part of having cancer. For the doctors to know your exact staging of cancer and your subtype of TC they need the results of the bloodwork, the scans, but especially the pathological examination of the tumor. Those weeks of waiting are some of the strangest I have experienced in my life. Anxiety hit hard. I didn’t feel well enough for any physical activity and mentally to shake up for anything remotely requiring concentration. Netflix and other streaming services were my best friends in these times.
After two weeks I finally had my appointment to get my results. Turned out removing the testicle was indeed necessary. It was seminoma, a malignant tumor. But fortunately for me I had no metastasis on the CT scans, so I was considered to be stage 1. Active surveillance was the way forward. This is a good thing, but for me the waiting game that surveillance is, becomes extremely mentally taxing. It’s like getting a three-month entry pass to life, but then comes another reality check. Will it be good or bad news? The same stress all over again. For me, those are not comforting thoughts. Honestly, I’m still struggling with this. I’ll wake up in the middle of the night with night terrors of everything that could possibly go wrong. I know it’s futile, but somehow my subconscious is stronger. Of course, this is just me, and I know I’m one of the lucky ones. But having cancer taxes us all mentally, there is no escaping that.
It quickly became clear that I wouldn’t be able to cope with this all by myself… but who do you talk to? There is my psychiatrist, and a good psychologist I know, and they are great listeners, yet they haven’t felt the feelings I had. Fortunately, there are some great online communities, and it’s by a fellow TC-survivor that I got invited to The Howling Place. Somehow Steve knew this would be a good place for me, and so it has been. I very quickly felt comfortable in our FB-group, there is this sense of “being home”. Not only did I find a place where other men understand the flood of emotions coursing through me (us), there is also this massive emotional support. And this support is a two-way thing, I feel better when members of the pack leave a supportive comment, but, just as important, the feeling of being able to support others, has become really important to me.
I’ve now been a member of the pack for nearly 20 months and what a ride it has been. This may come as a surprise for you but making friends has always been a struggle for me. But here, in the Wolfpack, I’ve made more friends than anywhere else before. The best thing for me is that our pack has such diversity. Our pre-cancer lives can be so different, we may have a different religion, political conviction, hobbies, favourite pizza … yet, all of us understand each other. Those differences are transcended by our cancer-journey. And above all, no matter how tough or rough one's journey may be, the pack is there. The pack is always there for me, but most of all, I’m so honoured to be able to be there for others as well. That has become such a meaningful part of my life.
So you can only imagine how I’m looking forward to meeting some of you this coming September. It will be my very first trip to the USA, but our last day together happens to be my cancerversary as well. So, I'm not just looking forward to serving Joe and Trevor some excellent pineapple pizza, I'm also planning to make some awesome new memories for September 11th.
Gregory Brown
Gregory Brown
Nanaimo, British Columbia, Canada
Stage 2 Prostate Cancer
When the Gathering of Wolves (GOW) was announced, I was happy to have the chance to get to meet face to face with so many from the MUTC pack whom I’ve developed online friendships with. It was a year ago I first heard the words cancer as I was diagnosed with Stage 2 prostate cancer. Thankfully, it was caught early enough that I had treatment options.
Unfortunately while I was considering all my options, I didn’t know about MUTC which would have been an invaluable resource. I did get great care and had my Brachytherapy implants Dec 16, 2021 (Merry Christmas). It was from reading a local newspaper article about fellow pack member Don Helgeson that I found out about MUTC.
I love meeting all the pack members from all over the world and North America. Don and I are fortunate enough to live in the same city and have formed a great friendship in such a short time. I can’t wait to forge the same friendships with the rest of the pack at GOW. I am so pumped to share some coffee, beers, campfires, talk trash and get to know my online friends better which can only be done face to face. I’m getting all emotional as I write this. I get more and more excited as the days get closer. Thank you Trevor Maxwell for creating this pack of wolves. Can’t wait until we all howl together at GOW. From the wet, west coast, an undisclosed location on Vancouver Island. Cheers.
Jay Jay Abramovitch and family
Jay Jay Abramovitch
Ontario, Canada
Stage 3 Colorectal Cancer
On November 15, 2020, besides some minor blood in my stool for several weeks I was a healthy, active, successful 36 year old with an amazing wife, family, friends, and all the opportunities I could ever ask for.
A couple weeks earlier I saw my GP who agreed to send me for a colonoscopy just to have a look and nobody even had cancer on the radar. It was the world famous Dr. Google and my gut that led me to really push for further investigation as blood in the stool was the #1 symptom of several types of cancer. But cancer?!? Not a chance I was 36!
On November 16, 2022 I woke up excited as I was headed on a road trip 1.5 hours away in Montreal, Quebec to visit the military cemetery where my grandparents rest. The entire day I kept having this nagging feeling to go to the hospital….go to the hospital….. Although I felt fine and still 3 weeks out of my colonoscopy, I was definitely tired of looking in the toilet time after time and seeing blood wondering what on earth is going on. Slowly this started taking a mental toll and the anxiety and stress increased by the hour. I arrived home later that evening and had a long chat with my wife about my concerns and knowing me all too well she encouraged me to go to the hospital and get myself checked out.
Driving to the hospital I honestly was still in denial that this could be potentially serious and kept going over the countless other explanations for the blood in my stool. Stress? Irritation? IBS? Hemorrhoids? Food Intolerance?
I checked myself into the ER in our small rural hospital so I knew the wait wouldn’t be too long, however being mid pandemic I was alone, no family, and no comfort. Sitting in the middle of a spaced out waiting room with the nurses faces hidden by masks and shields along with the overbearing smell of hand sanitizer and cleaning products, I sat and waited. 45 minutes later my name was called and after explaining my concerns / symptoms, and a physical exam, the ER doc leaned in and said, “I think this is a simple case of diverticulitis or inflammation of the intestines from stress. “I want to get you in for a CT first thing tomorrow morning just to make sure we get you the right antibiotics. Go home, relax and come back at 0800 tomorrow morning. This was very much along the lines of what I was expecting to hear, however little did I know that ER doc quickly became the first team member who literally saved my life! The magic words “I want to get you in for a CT “that came from his mouth saved my life! He did not have to imagine but he chose to and that’s a choice I will be forever grateful for.
The next day was a whirlwind. I went for my routine CT scan to get pulled into a small waiting room where my world would change forever. “We found a mass in your colon and it doesn’t look good. This has a high possibility of being cancer.” To an emergency endoscopy to obtain a biopsy to start a grueling and hellish 5-10 wait for results.
As each of you reading this knows all too well, hearing those three words “You have Cancer” and that wait for the official word is something you never ever forget. That will be forged in the deepest parts of my being forever. My wife was and continues to be my rock as there was so much fear of the known, so many tears, so much anger, everything was so overwhelming, and we still didn’t really have any official answers except for that until we got that phone call with results our lives were in limbo!
That week my wife and I decided it would be best for me to continue working and to keep things as normal and routine as possible while we waited. The sleepless nights, the every 5 minutes making sure I didn’t miss the doctor’s call, the wandering and fear, the angst, the questions, the anger was becoming overbearing but the wait continued. It felt like boulder after boulder piling on my shoulders and crushing the life out of me.
Friday, November 20, 2022 was the day my world officially came crashing down. I had just finished my work day and was heading to my car in the parking lot. Frankly, I remember being tired, exhausted, and downright pissed off that the doctor had not called and that meant another 2 days of waiting until Monday. I got into my car and threw my phone down and yelled at the top of my lungs and hit my steering wheel out of frustration. Almost like the universe planned it, moments later my phone rang. I looked at the call ID and it was my surgeon……. I took a huge deep breath and picked up.
“Hello”, I said
“Mr. Abramovitch, it's Dr…………., we have your results and like we thought it was cancer.”
“What does that mean?” I asked, as I was in shock even though we already knew this was a high possibility.
“You have cancer Sir”, the surgeon replied.
“Well what the heck do I do now?” I asked
“I am sending your entire file to the Ottawa Cancer Center and they will be in touch within two weeks for next steps”, the surgeon added.
I instantly hung up the phone, and it felt like my car was shrinking in around me and everything was spinning. My heart was pounding out of my chest, I was in panic but numb all at the same time. I gathered the strength to call my wife and in the middle of tears told her the official news. She instantly told me to pull over and park and she came to meet me. She found me wandering down the side of the road as if I was walking without an end destination.
Friday, November 20, 2020 was THE day the real journey began. I made a decision that day that I was not going to be a victim, a statistic, or whatever the medical world says a cancer patient should be! I was doing this my way and planned to help as many people as I could along the way.
A couple weeks later I met with my surgeon to plan my surgery. On February 19, 2021 under the incredible care and skill of Dr. Lara Williams and the team at The Ottawa Hospital, I had a successful Lower Anterior Resection which removed the entire tumor along with numerous lymph nodes for testing. I spent 3 days in the hospital then was released to continue my recovery at home and again play the waiting game for pathology results. This was another agonizing war as positive lymph nodes meant chemotherapy and negative lymph nodes meant that was the end of treatment for me. Several weeks later we met with the surgeon to discuss pathology and unfortunately 7/24 lymph nodes were positive. This would lead to my official diagnosis of Stage 3b Colon Cancer, and chemotherapy in the very near future.
Over the next 6 months I would undergo a PICC line insertion, multiple imaging tests, too many blood draws and doctor appointments to count, and the grueling FOLFOX Chemotherapy Regimen which included hospital infusions and a take home bottle for 46 hours every 2 weeks. Oh, let’s not forget the never ending list of side effects that come along with FOLFOX including cardiac arrest, and death!
I honestly have to admit that I tolerated chemotherapy fairly well and managed most side effects so I was able to keep working and carry out somewhat of a human existence.
September 24, 2021 was the big day! My last chemotherapy treatment! Although I was NED since surgery this was a huge milestone for me and my family, and all my supporters as this officially ended the treatment portion of my journey. On to the easy part…….. Oh I should also add in that my wife and I got the call that we were the perfect adoption match for a little 1 year old baby girl 2 weeks after my last chemo!
OR SO I THOUGHT….
Survivorship
“The hard part is over,'' they said. “
“You can go back to before cancer Jay.”
“Forget it ever happened and move on.”
“You look great, things must be going so well”
I have no doubt that all of the above statements strike a chord deep inside you. Those of us who are fortunate to reach NED (No Evidence of Disease) know that Survivorship is damn hard work! Yes the test, appointments, procedures slowly fade away into the past but so does the giant show of support and check INS, as well as the constant familiarity of seeing your medical team weekly. I felt lost, confused, not sure who I was or wanted to be. Everything as I knew it was changed. This is when the huge mental and emotional toll of cancer rears its ugly head over and over. Some days I wake up saying “I wish I was back on chemo.” How messed up is that!!!
Survivorship has definitely been a huge challenge for me in the midst of THE biggest challenge of my life. I am so damn fortunate to have amazing support and incredible people in my life that have allowed me to get to where I am today. NED 1 yr. 5 months!!!!
My Support
It takes a village……….. This saying has a totally different meaning to me today than it did on November 15, 2022.
I am so blessed to have THE BEST wife who has been my rock and constant strength and support since day 1. She has been steadfast, no matter what, and has sacrificed so much but always putting me first for almost 2 years.
Leslie, I love you and am forever grateful.
Kira, you came into our lives 2 weeks after my last chemo treatment. You little one, were the light at the end of the tunnel. Little did I know at the time but the reason you give hope, strength, and never giving up to a whole new meaning.
Love you, Dada
My family, friends, and coworkers have been so incredibly amazing during the most challenging time of not only my life, but my entire family. Your ongoing support, assistance, and just simply showing up has shown me a whole different kind of love and opened my eyes to how many amazing people love and care about me. I am forever grateful and cannot put into words how much you mean to me.
Love you guys
To every single nurse, doctor, receptionist, volunteer, technician, and every other health care worker who helped me THANK YOU!!! You are my heroes and from the bottom of my heart I owe you my life. Your selflessness, kindness, dedication, and amazing skillset got me to where I am today. I could not imagine doing that you do on a daily basis let alone during a global pandemic. Many times through my journey you stepped in for my family and provided me comfort and support because they couldn’t be with me. There are no words to describe how you impacted my journey. There are several people I got to know very well and need an extra special mention. My surgeon, medical oncologist, chemo nurses, trial coordinators, GP, psychologist and home nurses.
I also chose to use many alternative and complementary modalities that had and continue to have a significant impact on my journey. My spiritual advisor, energy worker, naturopathic team, and acupuncturist, THANK YOU. You all are rock stars.
Early on after my DX I hit the ground running looking for as many ways to support myself with likeminded people who have gone through what I was just beginning. Young Adult Cancer Canada is an incredible Canadian based organization who support adults between the ages of 19-40 who are affected by cancer. YACC has so many programs and a diverse community which I absolutely love. Shortly after joining I became heavily involved with YACC on an advocacy and mentoring level. I volunteered to lead weekly online chats, provided feedback for programming, and offered 1:1 support to anybody needing some guidance and insight.
Several months into being part of YACC I was so fortunate to have been introduced to Man Up to Cancer from a fellow male survivor. From the moment I sent my initial invite request, the rest was history!! The warm welcome I got from Joe Bullock and literally dozens of wolf pack members was overwhelming. I instantly felt at home and finally belonged somewhere. I still am amazed at how well you can form lifelong friendships online. There is something so special and unique about this group of men, it’s a second family, an army, source of strength and vulnerability. The best way to describe it is magical. The one mystery was this guy Trevor Maxwell. The founder, the creator, the visionary. Trevor was recovering from major surgery around the time I joined so was honored to witness the outpouring of support he received as our leader and quickly learned that he is a badass cancer fighting machine with the biggest heart out there. To be in the fight of your life and still find the time and energy to care about others and put an astronomical amount of time into creating a safe space for men to come together is just the most selfless, caring act I have witnessed from another human being.
I started to realize my calling was to support, help, and advocate for those that are still fighting or have won their battles to this terrible disease. When I found MUTC I was lost, confused, and scared and the wolf pack picked me up and provided me the space to grow and see what my role in cancer land really is and that I am meant for this. A few months ago I was given the privilege to be a Wolf Pack Leader and represent, advocate, and spread the MUTC message in Eastern Canada on behalf of MUTC. This has been an honor, privilege, and empowering experience of growth and self-discovery. Thanks to MUTC I had the opportunity to go to Colorado for a trip of a lifetime with Epic Experience. This trip was another life changing opportunity that was transformational. MUTC has given me so much and I will never be able to put into words how thankful and grateful I am. I will however wake up every day and LIVE. Live for those no longer with us, live for those who came before me and who will come after me. Live for my family. Live for me.
GOW is 3 months away as I sit here typing this and I am beyond excited. It is going to be incredible to meet my fellow brothers in person and hug them, shake their hands, and just be all together finally. This group means so much to each and every single pack member and getting to meet so many inspiring, bad ass men is going to be humbling, exciting, and downright kick ass. I wonder who will eat the pineapple pizza? MUTC tattoo contest maybe? I can’t even imagine the work and time our incredible organizing committee is putting in behind the scenes. I cannot wait to see you there.
The Canadian contingent is coming strong with Tim Hortons and Maple Syrup in hand ☺