The Journey of Hope
One Man’s Story of Advanced Stage IV Melanoma and Immunotherapy Treatment
Cancer is a tragic illness. The Cancer Journey, and it is a journey for anyone especially with more advanced cancer, can also be a profoundly meaningful human experience that enables you to closely examine your life and decisions, spirituality, values, beliefs, and relationships. It can also enable you to develop an awareness of friends and family in ways you may not have previously considered.
There is sadness, loss, and despair in this disease; for sure. It fundamentally changes the lives and future of ourselves and our families. However, in my story, I found there to be surprise joys, profound meanings, as well as new connections with people, as family and friends tighten together around you.
At the very least, we get an up-close personal view of our own mortality and fragility. This can bring you closer to your God, spirituality, or at least a respect or appreciation of the balance, beauty, and occasional kindness of the natural order of things.
In 2008 at age of 33, I was working, married with a small child, mortgage, trying to live a good life with my family when things suddenly changed.
I discovered a dark mole on my right torso that had changed size and darkened. I went to the dermatologist, who wasn’t concerned, but removed it and tested it. The result came back: ‘malignant stage 1 melanoma’. I recall the surprise, the seriousness of her facial expression; as well as my own creeping fear.
I also recall regret. I had smoked since age 16 as coping for anxiety/depression and had tried to quit many times. “It’s finally caught up with me”, I thought.
I worried for myself, my family, and mostly for my son.
The dermatologist immediately referred me to The Tom Baker Cancer Center in Calgary. With what felt like dozens of needles, minor surgery was completed to excise a margin of skin around the site of the cancerous mole. My sentinel lymph node in my right armpit was also removed for testing.
The lymph node and skin testing came back clear. We had gotten it in time. Thank GOD.
I was closely followed every six months by the Tom Baker Cancer Centre with full-body skin exams and was discharged with congratulations as a Cancer Survivor after five years. I continued to see dermatologists; who over time removed moles, Spitz nevus, small basal skin cancer spots, and some precancerous skin cells on my back. Nothing too concerning. Nothing like what was to come.
I eventually quit smoking through years of difficult effort with nicotine replacement therapy, online support groups, and final nicotine cessation. By the end, I had smoked for 15 pack years. Nothing to be proud of and nothing I would ever try to justify. As an explanation, smoking was a helpful and terrible crutch for me during my many difficulties with anxiety and depression. A crutch that kept me going when many other interventions simply did not help.
Life carried on. In the summer of 2018, I was 43 years old, my family was very active hiking and I was fit, exercising at the gym 3-4 times per week. There were many forest fires in the area and smoke was present in our city, Calgary, as well as on our hikes. I began to have symptoms of shortness of breath when hiking and at the gym. I attended a medical drop-in clinic for breathing difficulties and was treated for potential asthma with puffers. Over a few weeks, my breathing became more labored and my coughing worsened. Completing two flights of stairs at work became harder. I went to a second drop-in medical clinic and the general practitioner ordered a chest x-ray. The day after the x-ray I got an immediate call back asking me to come in to see the doctor again that afternoon.
As I waited in the examining room, the kindly doctor walked in with a solemn look on his face. He took a breath and said I had a large mass in my right lung and a secondary large mass in my left lung. Three possible working diagnoses were proposed: lymphoma, lung cancer, or a lung infection.
Tears welled in my eyes as I looked at him in surprise and confusion. This kind man tried to cushion the blow of this news; however, that moment changed my life forever. I recall the kindness of the physician as he completed every conceivable referral to the Tom Baker for emergency assessment, testing, thoracic surgery consultation, and urgent referrals This was my first experience of being spiritually touched by the concern of a medical professional. It was comforting in a sense; though I remained overwhelmed and could barely process what had just occurred as I drove home.
I returned home and broke the news to my wife. I have had misfortune in my life like many, but I have been blessed by a wonderful wife, son, and immediate family. We cried we hugged, we prayed, we prepared. I called my sister, mother, and father in the evening. The shock and concern in everyone’s voice made me want to vomit. I could sense my parents turning white with shock. They had been through a cancer diagnosis with me 10 years before, however, we all knew this was much more serious. My son was 11, we waited to tell him as we did not know anything for sure yet.
My next step was a pulmonologist appointment for a bronchoscopy that would confirm a diagnosis. As I waited for the appointment date, I prayed that my years of smoking had not given me lung cancer and that this problem could be a tropical lung infection that perhaps I had caught while traveling in Cuba two months before.
A bronchoscopy is a fairly routine procedure for most people. The clinic provided me general anesthetic, flushed my lungs for fluid, and took a biopsy from the mass. I reacted very poorly to the procedure and when I returned home I had fevers, night chills, cough, and headaches. This was in addition to coping with the emotional stress of not knowing what was wrong with me while considering these masses in my lungs. It was an agonizing evening. My wife, the ever-present strong force persevered.
The bronchoscopy test and further CT scans confirmed a stage 4 melanoma diagnosis in a massive tumor in my right lung measuring 7 cm x 6 cm x 7 cm. A second tumor in the left hilar lymph node was small in comparison, but huge by cancer care standard at 3 cm x 4 cm x 3 cm. Other small melanoma tumors were also present in my lungs.
The sheer size of the tumors amazed the specialists at the pulmonology clinic. I am 6 feet tall, my torso is quite long and I have been told I have long lungs. As the interior of my lungs have so much space it took a long time for the tumors to grow to the degree that they created symptoms; like shortness of breath. I was also in pretty good physical shape. The main right tumour was almost a third the size of my right lung before I began having symptoms.
I was really having trouble breathing now. I took medical leave from my employment. My lungs were trying to cough out these massive foreign masses that were attached to the interior of the lungs. My mind was trying to cope with trying to understand that diseased tissue was growing in my body that wasn’t supposed to be there. I oscillated between despair, preparing for death, supporting my family, maintaining my sanity, and keeping things ‘normal’ for the boy. Things were really bad.
I was in a mode of self-care, family-care, medical investigation, and education. My immediate family rallied support, care, and love around me. I know not everyone has that and I know how fortunate I am.
I sincerely pray for comfort for anyone who feels loneliness or despair during a difficult cancer diagnosis and treatment. I may not know you, but I know the situation and I don’t need to know you to feel empathy and kindness; I don’t need to know you to provide prayer for wellbeing for you. And I do pray, often and to this day for people who are faced with this difficult situation.
A blur of scans, breathing tests, blood tests followed and in October 2018 I finally had an oncologist consultation at the Tom Baker. 2.5 months after my first general practitioner appointment about my breathing symptoms.
I have grown to have tremendous respect for my oncologist at the Tom Baker as a medical oncologist, a researcher, a leader in her field, a professional, and as a human being. Truly a remarkable woman, and she has been a blessing in my Cancer Care. Dr. Tina Cheng.
In the first meeting we had, she discussed the limited treatment options that were available. I had a very advanced stage 4 melanoma cancer. Immunotherapy was a newer treatment that may extend my life or decrease my symptoms. However, I needed to start IPI/Nivo combination immunotherapy immediately. She was kind and supportive, but realistic about my severe case. I appreciated the honesty and directness; bleak as it appeared. If only I could live until Christmas, I had much planning and work to do to get my affairs in order, plan my goodbyes. Pragmatic, a bit fatalistic yes, realistic also; I was coping and doing what I could do.
Facing impending death due to advanced stage 4 cancer is an obviously difficult experience. It’s also difficult to describe. Human mortality is a fact and when I mindfully and objectively looked at it, I began to develop clarity. I immediately began reviewing my present life, priorities, my finances. Questions came: How would my family survive without me, What about my dreams and goals? I was going to leave my son without a father. I wept.
Somehow we got through it.
I lived in as mindful and non-judgmental a state as I could. Focusing my mind on individual tasks that make up our day. Often I could only focus on just one moment at a time.
An important shift happened here. Although I needed to be physically and medically taken care of, I shifted my internal focus from what was happening to me and prioritized taking care of my family members in every way I could. I ensured that my health needs were met, but this internal family focus was always close to my thoughts. This period profoundly affected me.
Mindful, loving-kindness growth through grief was one of the biggest gifts that my Cancer diagnosis gave me. I was going to live every last moment as a loving testament to my family and friends while living in the present moment as much as I could. It was not going to be easy. This would be my last chapter. Of course, I was upset. I cried, we all cried. But after the crying, I became mindful again and became loving.
I pulled everything I could together, every inner resource I had. I was determined to be as well as I could be, even if I only lived until Christmas 2018 and even if only I got through 1-2 immunotherapy treatments.
My next task was a PET scan. It’s a full-body scan that specifically measures for Cancer throughout your body. I didn’t think too much about what the scan would say. I mean how much worse could it be. I had a follow-up appointment with my pulmonologist who reviewed the results.
As I mentioned previously, I had two massive tumors in my lungs with other small ones. The pulmonologist scrolled through the results, yes there are the ones in the lung he said. Yes, he said, one in the pancreas, liver, bone of the rib, femur, a couple of metastases in the muscles of your leg, there’s one in your neck and something’s going on in your brain.
WTF???? What did you just say?
I had just been told I had advanced stage four melanoma spreading rapidly throughout multiple body systems. My advanced cancer was completely out of control. I could not believe my eyes as I viewed the multiple metastatic images. I felt light-headed. This pulmonologist was a very professional specialist and a kind man. He was straightforward but caring. I’m glad I was able to avoid vomiting on him. I left the appointment. My father drove me home and entered my home. I told him the news. I told him I didn’t know how I was going to tell my mother that I was going to die soon. I wasn’t feeling much hope then at all.
‘HOLY SHIT’ my wife responded when I told her in the evening. I was very calm and matter of fact. I told her that my priority is my wife and son’s present and future wellbeing. This is happening, it’s terrible, and yes we’re upset. My wife and son will survive, they will recover, they will have a good life. Again; as happened at times throughout this journey, through that painful process a beautiful thing developed. A profound and peaceful; sad, but selfless love emanated from me to my family and to the world outside of me. It was not there all the time but it was there. This was a sign for me of a higher power.
I read about the potential miracle of immunotherapy. Some lucky people who reacted well to their therapies had their cancer tumours ‘liquify’ away leaving empty caverns where the tumors had been. The words remission and cured were sometimes said.
I’ve never considered myself that lucky. I really closed down to the possibility of getting better. Prior to immunotherapy, advanced melanoma was essentially a terminal condition.
Stay positive, love my family, but prepare for death. I had my first infusion of IPI/Nivo immunotherapy. Half paid for by the company Bristol-Myers-Squibb and the other half paid for via Alberta Health Services. My gratitude to Bristol-Myers-Squibb and Alberta Health Service for this funding is profound.
At this time the right tumor in my lung had now grown to a shocking 9 cm x 9 cm x 8 cm and was crushing my right windpipe so I could not breathe out of my right bronchial airway. Additionally, the tumor was snaking out of the right bronchial airway and creating a second blockage in that air path. I needed surgery to have a lung stent inserted to open this airway and surgery to cut the tumor back that had snaked through the right bronchial opening. The surgery was a success, however, immunotherapy side effects were severe. I had continual fevers following immunotherapy, a lung infection, hospitalizations where I was placed into palliative wards. I lost 50 pounds and had limited activity for two months. The fatigue side effect from immunotherapy is best described as feeling like there was a small mountain sitting on my chest. It just pushed me down. Getting out of bed and showering was sometimes difficult. I also had massive chest pain at the sites of the two largest tumors in the lungs.
Fortunately for me, my Cancer Care team was amazing. My oncologist, the Tom Baker Triage team, and all the on-call doctors were always there for me; 24 hours a day. I was on medical leave from my job and my wife was fortunate to get a paid special leave from her position which alleviated so much as I required so much care and time. As I cycled between appointments, hospitals, immunotherapy treatments, side effects, emergency rooms, and testing a miraculous thing was happening. The immunotherapy was working. And not just a bit. The immunotherapy was working A LOT!
The immunotherapy was working exactly as intended. Tumors all over my body were not only shrinking. They were vanishing. Dare I say the tumors were liquifying, as I had previously jealously read about? The tumors that were in leg muscles? Gone! Tumors in my rib and femur bones? Gone – leaving a small fracture in the rib! The pancreas tumor – nope that was gone too. The large left lung tumor? Well, it shrunk to half its size down to 2 cm X 2 cm X 2 cm.
The original massive right lung tumor site had the most amazing results. I believe the severe chest pain I had during my first hospitalizations was related to my immune system destroying the cells of this massive tumor in my right lung. I believe the pain I felt was the immunotherapy’s attack on the tumor, the pain of decimating the diseased cells. What was left of this tumor? Well, the mass just wasn’t really there anymore. From 9 cm x 9 cm x 8 cm it eventually shrunk down to approximately 1.5 cm x 1.5 cm x 2 cm.
The oncologist suspected that perhaps only scar tissue was left.
I believe in medical science and in scientific advancements. I also believe in good spiritual forces. Being touched so directly by the finger of a miracle has profoundly enhanced my awareness and experience of God and spirituality. Without a doubt, immunotherapy has saved/extended my life. Without a doubt, God had a hand.
Did I say it was a Journey?
Journies don’t really seem to end. You may end a trip or a job, but your life keeps going until the end. With stage 4 cancer, that journey doesn’t really end either. You get pockets of respite, pockets of peace between scan and the scanxiety that comes with it. The joy between specialist appointments that are sometimes full of scary bad news.
I had my worst series of side effects following my third immunotherapy infusion in January 2019. I was hospitalized for a month due to a side effect of when my bowel stopped working. More weight loss, I became very weak and ill. Eventually, with a courageous specialist and a hefty dose of steroids my bowel regained full function.
I was diagnosed with advanced-stage 4 melanoma in October 2018 and by March 2019 only two lung masses remained just over the size of a regular lymph node. It could still be cancer, it could be scar tissue, or it could be both.
The specialists said that we will monitor the two lung lesions.
Oh and Ya the problem in the brain.
During the initial testing and scans in October 2018, 5 brain melanoma metastases were found. The immunotherapy treatment wiped out 3 of them. I eventually required focal radiosurgery (focal radiation) to treat/destroy the two remaining. Six months following the focal radiosurgery, the size of the two metastases grew dramatically. It could be a normal increase in size due to scar tissue, but the specialist was concerned and cautious.
I returned to work part-time, amazed that I was alive. Ongoing severe fatigue and nausea plagued me, but I was happy and blessed to be alive. I regained weight, strength, and I exercised. By looking at me you could not tell that I had even been sick. I told a few people at work about my diagnoses and what happened. Several people thought I had been on a stress leave for 14 months as I appeared so healthy and normal.
Five and a half months passed. Blessed, happy months. A pocket of joy or normalcy and joy. In advanced Cancer monitoring, you live in pockets of peace and optimism between scans and appointments. In April 2020, I had more bad news. I had completed a scan that showed the two original cancer lung sites had grown slightly by 3 millimeters each. The specialists advised that lesion growth at the original Cancer site is highly suspicious for the danger of recurrence. No other legions were present aside from the two potential scar tissue areas in the brain.
Again, I went through disappointment, distress, fear, recycling of so many emotions. Eventually, the surprising beauty of mindful loving-kindness returned with a complete focus on taking care of the needs of my family while I pursued immunotherapy treatment. The spiritual cycle continued again. I went on a 2nd medical leave from my employment. I completed my fourth and final double dose of IPI/Nivo immunotherapy, returned to the hospital for a week due to side effects, and returned home to recover.
This is where my long story comes to the present. One month out from the last double drug immunotherapy treatment. Recovering, dealing with side effects, staying positive, trying to find the pocket of peace and joy with my family. Reconnecting with my meaning in being alive in a mindful way.
Throughout my Cancer journey and the profound despair it brought at times, I often turned to Melanoma support and education websites to seek information, knowledge, comfort, advice, and most importantly to read stories of people who had the illness. I needed to know of people who had the illness, how they coped. I needed to know of people that recovered for hope, but I also needed to know stories of people who did not recover as I had to prepare myself for that possibility. My heart went out to every person whose story I read and I learned a lot about coping with a very difficult illness.
Advanced Cancer is a tragedy. However, surprise blessings and grace also accompany you on this journey. Tied with this tragedy for some people is the potential miracle of immunotherapy. Not always as a cure, though it seems to happen for some people; but as a way to provide HOPE. Hope for more TIME. Hope for an opportunity to develop more PEACE.
I now have peace often. I also have fear. I don’t know if I will go into remission, if I will manage cancer as a chronic health condition for many years, or if I will only live another six months. I may need brain surgery to remove the brain metastases next month depending on the results of my pending scan.
BUT I do have HOPE for myself and for people who are coping with this medical condition.
My purpose for sharing my story is to give back to the melanoma community as many people who have shared their stories before me.
I have survived. No one ever thought I would get this far.
As you’ve read, I know what dealing with advanced melanoma is like. I meditate and pray for you, the reader whether you are someone with the illness or a concerned friend, family member or medical professional.
Whatever your spiritual convictions are, I pray for your PEACE and Well Being. At a minimum, to get you through the dark times, but also to enable hope for long term Health and Wellbeing.
Be mindful without judgment while you care for yourself and the people that are important to you.
Be Well and live with Peace.