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Come together to raise nationwide awareness about glioblastoma (GBM), the most common, complex, treatment-resistant, and deadliest type of brain cancer.
A year ago, my partner Kirk and I spent Memorial Day snow camping and ski touring up Broken Top, our local backyard mountain. We skied in with heavy packs and plenty of snacks for several days…a prospect I can’t even imagine right now.
A year ago, I was strategizing which trails to hike next and how to improve those trails through resource development. A year ago, I hosted several conversations a month at Intentional Hiking, trying to encourage the trail community to take a more active role in the world we are hiking through.
Today, that is all gone. Well, not gone exactly; the trick now is to find out how to live what life I have now to the fullest, not knowing how much time I have left. Some argue we should always live this way, but I do know inside and out that walking and hiking will still take center stage in whatever way I choose to live now.
Metastatic Lung Cancer
I had a series of injuries that didn’t seem to be healing and prevented me from hiking for four months last fall. When visiting my family in Louisiana for the holidays, I found out my health issues were critical and I needed emergency surgery in December 2024 to stabilize my spine and remove one of my vertebrae, which had been weakened by a tumor. The initial MRI showed lesions in my lungs, brain, spine, rib, and hip.
One tumor had completely replaced my C4 vertebrae and was pressing into my spinal column. The medical team at the ER quickly put on the neck brace and explained they needed to put me in an ambulance and take me to the bigger hospital. My spine could collapse, and I needed surgery stat.
In the span of minutes I went from, “Man, perimenopause sucks and is making my body heal too slowly” to “I have cancer and need to make sure I don’t get paralyzed.”
It was incomprehensible.
Further imaging and testing led to my diagnosis of metastatic stage 4 lung cancer. Metastatic means it has moved beyond the primary spot (my lungs) into my spine, lower back, ribs, hip, and brain, where they discovered 27 small tumors in and around my brain. I had lots of tiny tumors in the fluid outside the brain, which means they are mobile and can travel through the spinal and brain fluids and be tricky to treat with traditional radiation.
I’ve never smoked a cigarette in my life, but as I’m learning, 10-20% of lung cancer patients have never smoked. When I look back at my life, I have to wonder about the hours and hours I spent around a campfire, especially in the few years when I worked in wilderness therapy… the students always claimed the smoke-free seats, and I remember joking about getting the black lung with other instructors as we were often relegated to the smokiest seats around the fire. Then there have been the 20+ years of cooking over a camp stove.
All that doesn’t really matter now. How I got it, how it spread, why I got it, why me, why now…those are all questions I’m not even going to entertain.
Genetic Mutations
My medical team knew I had metastatic lung cancer, but they needed to perform genetic testing, also known as biomarker testing, on my tumor to see if I had any mutations that would help determine the best treatment.
Ready for science class? All the cells in the body have the same genes, but each cell uses only the genes it needs. That is, it turns on (activates) the genes it needs at the right time and turns off other genes that it doesn’t need. Turning on some genes and turning off others is how a cell becomes specialized, such as becoming a muscle cell or a bone cell, for example. Some genes stay active all the time to make proteins needed for basic cell functions. Other genes are shut down when their job is finished and can be turned on again later if needed.
While we all have basically the same set of genes, we also have differences in our genes that make each of us unique.
The ‘code’ or ‘blueprint’ for each gene is contained in chemicals called nucleotides. DNA is made up of 4 nucleotides (A, T, G, and C), which act like the letters of an alphabet. Each gene is made up of a long chain of nucleotides, the order of which tells the cell how to make a specific protein.
Some people have changes in the nucleotides of a gene, which are known as variants (or mutations). For example, one nucleotide ‘letter’ might be switched for another, or one or more letters might be missing, when compared to most other people’s genes.
The overall effects of some gene variants might not necessarily be ‘good’ or ‘bad.’ For example, gene variants account for differences in people’s hair or eye color. On the other hand, some variants can lead to a disease (such as cancer) or increase the risk of a disease. These are referred to as pathogenic variants. (These are also what many people think of when they hear the term mutation.)
Ready to go further down the mutation rabbit hole with me?
Gene variants, including mutations, can be either inherited or acquired. An acquired gene mutation is not inherited from a parent. Instead, it develops at some point during a person’s life. Acquired mutations occur in one cell and are then passed on to any new cells that come from that cell. This mutation cannot be passed on to a person’s children.
Acquired mutations can happen for different reasons. Sometimes they happen when a cell’s DNA is damaged, such as after being exposed to radiation or certain chemicals. But often these mutations occur randomly, without having an outside cause. For example, during the complex process when a cell divides to make two new cells, the cell must make another copy of all of its DNA, and sometimes mistakes (mutations) occur while this is happening. Every time a cell divides, there is another chance for gene mutations to occur. The number of mutations in our cells can build up over time, which is why we have a higher risk of cancer as we get older.
So, the way I understand it, something triggered a cell to mutate in my body. When? Maybe last summer, when I started having injuries that didn’t heal? Maybe earlier…the lung tumor could have been bebopping along slowly gathering mass for years, not really affecting much around it until a change of some kind turned it into overdrive.
EGFR Exon 19 Deletion
EGFR is a protein found on the surface of both healthy cells and cancer cells. When the protein is damaged because of a genetic mutation, it doesn’t perform the way it should, causing rapid cell growth and helping the lung cancer to spread.
The EGFR exon 19 deletion mutation I have is actually quite common, which means it has been studied, and that medications have been used to combat it for quite a while. What a relief. My enemy is known and named, and now it can be combated.
I’m OK with not being special here. I’m fine with having the run-of-the-mill lung cancer mutation. I don’t have to be special all the time! There are proven medications I can take with this mutation.
My oncologist prescribed osimertinib (Tagrisso). Osimertinib is a tyrosine kinase inhibitor (TKI), which means the drug will inhibit the EGFR signaling; in other words, it will slow or stop the growth of cancer cells.
It’s a once-a-day pill that comes with a whole slew of fun side effects. Best of all? This drug can cross the blood-brain barrier, offering benefits in cases of brain metastases like mine.
So, if my body tolerates and responds to the drug, the median overall survival rate is 38.6 months…that’s over three years, which I guess is good?
Navigating Treatment
After my initial spinal surgery, I wore a C-collar for three months to allow my spine to heal and used a wheelchair to move around. I began chemotherapy in January 2025 and finished it in April. In addition to chemotherapy, I did radiation targeting my ribs and started on Tagrisso.
It’s a full-time job to have cancer between biopsies, radiation, medications, physical therapy, and other appointments.
Today, I am in maintenance mode. That means no more chemo for now. The treatments have been working, and my oncologist said I’m responding really well to the Tagrisso and chemo — the combo helped to knock the tumors back a bit, and some of my brain ones are completely gone! I still have tumors, and might for the rest of my life, but they are in check now. I’ll continue with the daily targeted med indefinitely and hope that I can regain my strength. This is a life-long disease, but I can see a life again.
My Mindset
I still get hung up on the whole short life span with a stage 4 diagnosis. I’m still determined not to let that slow me down in the “maintenance phase” of life after chemo. I realize the chemo I completed might be the first of several chemo cycles, but hopefully, there will be long phases of maintenance in between where I can live a semi-normal life. It’s hard to fully conceptualize, though.
My life will most likely be shorter than if I hadn’t had my cancer turn on. I’m not sure yet how to process that. I choose to believe that I might live until 80 instead of 90. That it won’t be short as in soon short. I take my targeted cancer meds (Tagrisso) until it stops working. A few months? A year? 10 years? Then, I take a different medication for as long as it works, and so on.
The therapist I’ve been seeing even suggested to ask myself what this cancer year (years?) has allowed me to do, and if I’m honest, I’ve been able to refine my life down to the very essentials: spending time with people I love: Kirk, friends, and family; reading; writing; and travel. And maybe it’s OK to be grateful? Oh man, that’s a hard one. To be grateful for the cancer while also fighting the cancer. It’s a complicated dynamic we have going on for sure.
I’ve always liked Annie Dillard’s quote: “How you live your days is how you live your life.” I have long kept this question at the center of my decision-making. I like to live as if each day would be full enough, joyful enough, and rich enough to be my last. Before, it was never about death; it was about living a fun, fulfilling, inspired, adventurous life.
What would happen to the world if we all examined our priorities and lived carpe diem? Lived each day to its fullest? If we were grateful for every day and the people in it? I know we would live in a different world. Maybe a kinder one?
