Linnea Olson was diagnosed with non-small cell lung cancer in April of 2005. In addition to being a vocal advocate for cancer patients, Linnea is a mother, artist, writer, friend, adventurer. She refers to herself as a terminal optimist; someone who is living (each day to the fullest) with stage 4 lung cancer. Linnea also writes at outlivinglungcancer.com.

Linnea Olson

Every once in a while, something comes along that changes everything.

Linnea Olson visiting Machu Picchu during her trip to Peru. Photo Provided by Linnea Olson.

When Terri Wingham, founder of the nonprofit A Fresh Chapter, reached out to me to see if I might be interested in a fellowship for a program in Peru, my immediate response was “heck yeah.”

 (AFC) is a nonprofit that facilitates life-changing volunteer and leadership experiences to empower people impacted by cancer to discover new possibilities, community, and purpose. Through AFC, participants see that struggle is universal and connect to a supportive community while they redefine their future.

The opportunity to travel to a foreign country held enormous appeal to me. The details were less consequential. Including the fact that I had been living with stage 4 lung cancer and was enrolled in my third, first-in-human trial for an experimental therapeutic. 

Honestly, I had no idea what I was getting myself into, but I was game.

I barely made it to Peru, between credit card fraud rendering me unable to call a planned Uber and leaving my arrival packet at home (which contained all the pertinent details to meet with AFC program leaders upon arrival). As you might imagine, I was extra grateful when I landed and realized how thoughtfully planned the trip was.

Terri, AFC’s founder and CEO, and her team took care of all the details. For the next two weeks, all I had to do was show up, allowing a state of engagement not so dissimilar from childhood. I would fall into bed each night exhausted, but I would also arise each morning excited to see what wonders the day would hold. 

My “tribe” — a nickname for program participants &mdash; consisted of twenty individuals with varying forms of cancer. Half of the group were Eli Lilly and Company volunteers, some of them directly involved in cancer research and drug development. This was my first opportunity to engage with ambassadors from a pharmaceutical company without an agenda other than that which was personal. In addition, we were on totally equal footing, because we’d all been smacked upside the head by cancer.

Each of us was assigned to a volunteer position. I worked both at a senior center and in the kitchen for a cancer hospital. The communities we were working in were disadvantaged to a degree that was both shocking and totally unfamiliar to me. 

At this point, I had been living with advanced lung cancer for more than twelve years. I had faced some extraordinary challenges — but with all the advantages that come from living in an affluent country like the U.S. The people I encountered in Peru and the hardships they were facing blew my mind and my heart wide open. And yet I felt so incredibly connected with everyone I interacted with. Feeling vulnerable (out of my element) yet strong (volunteering) was a potent combination. The kitchen I worked in remains one of my happy spots &mdash; peeling, chopping, washing, serving; the smells and the sounds. A language that was foreign to me and yet the implicit understanding that comes from shared humanity.

As for my tribe, the bond we formed was extraordinary, which I believe was due in large part to the fact that we were in extraordinary circumstances. How often does a group of people come together to volunteer in another country with a diagnosis of cancer as the single common denominator? And not only did we work together, we shared rooms, meals and a circle daily. Perhaps my biggest contribution was the suggestion that we all join in a group hug, something that became a bit of a cherished ritual.

In addition to volunteering, each tribe has an opportunity to visit a magical place. In our case, Machu Picchu. When you take into account that a number of us had advanced cancer and were in treatment, and yet we all managed to summit Machu Picchu, you get a picture of both how surreal and empowering this experience truly is.

A Fresh Chapter is also about the ripple effect  the expectation being that upon our arrival back home, we would spread some of that magic around. I’d like to say I’ve honored that expectation. I am not the person now that I was then. I regard my life as “before Peru” and “after Peru.”

Already brave, I am now fearless and incredibly confident of my own ability to adapt and prevail. But most importantly, I learned to hold space, a concept that Terri taught. I was able to remove myself from the storyline of cancer. This life is not just about me. The resultant loss of ego has led to a much stronger connection to the world around me. Kind of like one giant group hug.

A Fresh Chapter has helped hundreds to take back their lives, and Terri and AFC are only getting started. AFC is working to develop an online model that will scale the non-profit’s impact to reach thousands of Americans in dispersed communities across the U.S., as well as those who may not be healthy enough for an immersive travel experience, looking to start their fresh chapter. 

Linnea Olson is an artist/writer/advocate/activist who has been living with lung cancer for over 14 years. Since her trip to Peru with A Fresh Chapter in 2017, Linnea has been sharing her journey in hopes of helping others with a similar story. She also blogs at www.outlivinglungcancer.com.

Articles

Traveling helped me remove myself from the storyline of cancer and reconnect with the world around me.

From Brave To Fearless: How Volunteering In Peru Shifted My Cancer Perspective

When I was diagnosed with non-small cell lung cancer at the age of 45, I was so sad, so angry and so incredibly depressed that I vowed I would never find anything good to say about cancer.

Of course, platitudes were offered to me immediately.

“Everything happens for a reason.” It does not.

Then there is my personal least favorite, “What doesn’t kill you only makes you stronger.” Really, what is trying to kill you just keeps on trying.

I had the crappy attitude down pat and it would only go away when someone pried it from my cold, dead hands. 

Fortunately, I have a short attention span and being mad all the time got old fast. When it became clear that surgery and chemotherapy had done little to deter my cancer, I got my dander up in a different way. Surviving was going to be a hell of a fight, but I was game.

Cancer and I have been at it for 11 years now, and you’d think we’d just call it a draw. Unfortunately, that is not an option, so I had to figure out how to live with my disease. I still detest this unwelcome houseguest, but now acknowledge that cancer has given me a very special gift.

Yes, I did say gift. The very best part about having cancer (and there are a couple of other teensy weensy things that fall under the character development category) is the people. Because I have cancer, I have met, interacted with and fallen head over heals for an extraordinary number of people. My medical team, support staff, amazing social worker, fellow advocates, friends at the Koch Institute and Camp Kesem and so many others who have also been smacked upside the head by cancer. They are beautiful people whom I have loved, respected and sometimes lost. They are individuals who have made my life richer than I ever thought it could be.

So there you go, cancer. Where you would have laid waste, I found, instead, utopia. I think you should just fold now.

Looking for the silver lining during cancer isn't always easy, but it is possible.

The Best Part About Having Cancer

The first thing cancer took away was my innocence. I still remember what it was like to hear those five words: "I’m sorry, you have cancer" — the rushing in my ears coupled with a sense of nausea and vertigo, but mostly the realization that I could no longer operate under the assumption that I was safe.

Cancer is not just a personal tragedy and my family got smacked upside the head as well; none harder than our then seven-year-old son. Growing up with a parent who has cancer means that the focus is often shifted away from you, the child. Playdates get scuttled, routines disrupted and an air of anxiety and worry permeates. Worst-case scenario, you have to deal with the fact that your parent is dying, as my youngest did in the summer of 2008. That is a hard thing to recover from.

Fortunately for our family, we were introduced to 

, an incredible organization that offers free week-long summer camps to children who have a parent with cancer (and which is enrolling for next summer 

). Our son Peter counts the five weeks he spent at Camp Kesem as among the best of his life. Before he went to camp, he couldn’t talk about my cancer and now he wants to major in biology with an emphasis on cancer research.

It’s interesting what cancer does to friendship. After my diagnosis, some people stepped up to the plate in the most extraordinary ways. My friend Miranda arranged for meals to be delivered to our house for the entire three months it took for my four rounds of chemotherapy. Other friends just sort of faded unexpectedly away. It's something that still surprises me.

Prior to my diagnosis, my marriage had been a little shaky but for the first few years, we really rallied. I would say we were really close up until the time I was restaged to 4. Had I passed away in 2008 as predicted, I would have died a happily married woman. Instead, I responded to an experimental therapy and a new chapter began. I was still terminal but now I was also chronically ill. It takes a special person to live with, love and care for someone who has a chronic illness. Ultimately my marriage ended and I am now navigating life with a terminal illness as a single person.

Of course there is the big hit that happens physically. Surgery, multiple chemotherapies — which is said to accelerate 

 — and four targeted therapies; each with a plethora of side effects. Weight loss, weight gain, cavities, thinning hair, no hair, hair in strange places, skin rashes, edema, nausea, constipation, diarrhea, neuropathy, liver toxicity, cognitive affect and personality changes have all been side effects of treatment. Sometimes it can feel like insult to injury &mdash; you mean I have to have cancer and look/feel like hell too?

The greatest loss has been when my friends pass away. Initially, I was hesitant of becoming close to others with lung cancer as I didn’t want to compare my situation to theirs. It was utterly devastating when the first time someone I’d developed a bond with passed away. However, it had been such a mutually beneficial relationship that I was undeterred. Now I count those friendships as one of the perks of cancer (really!), something I will go into more detail about with my next post. First, I would love to get a conversation started. What cancer has taken from you?

The first thing cancer took away was my innocence. I still remember what it was like to hear those five words: "I'm sorry, you have cancer."

Cancer: The Take Away

I was diagnosed with lung cancer at an early stage when a cure was a distinct possibility. However, despite aggressive treatment — a lower left lobectomy followed by four rounds of chemotherapy &mdash; my cancer soon recurred. Three years after diagnosis I was restaged to 4 and advised that I had only three to five months left to live. Upon my request, I was referred to a thoracic social worker and at my first appointment I asked for help coming to terms with the fact that I was dying &mdash; I believe my exact words were, "Help me learn how to die."

Well, thanks to an experimental therapy (three of them, in point of fact), I didn’t die then. More than seven years later, I still see the same thoracic social worker every few weeks with the focus now on surviving. We talk at length about the problems specific to advanced cancer — the challenges of getting on with life when your prognosis is less than encouraging.

For instance; it takes real guts to get up in the morning when you know that your statistical probability of surviving the next five years is a dismal 

, the figure given for stage 4 lung cancer. Rather than having PTSD, my social worker and I have agreed that those of us with terminal illnesses likely suffer from OTSD, or ongoing traumatic stress disorder.

However, I continue to count my blessings and I manage the day-to-day with a mix of faith, hope and a real can-do attitude. Faith in medical science and my oncology team, hope that I will respond to available treatments with more coming down the pike and the strong belief that, against the odds, I really can keep on surviving.

It's not always easy to keep on living when you've been told that you are dying.

Linnea Olson

From Brave To Fearless: How Volunteering In Peru Shifted My Cancer Perspective

The Best Part About Having Cancer

Cancer: The Take Away

Living With Terminal Cancer

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