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Cancer and my Giving Tree


Dec. 20, 2019

When the storm of cancer hits, you need somewhere to go for protection. Somewhere to shield and strengthen you.

My shield is an oak tree. 

It stands alone in the field of tall grasses and wildflowers at the back of our property. Roughly 60 feet tall, with a crown at least that wide, this majestic tree has been a source of strength for generations of Maxwells.

I haven’t always protected the tree in return.

A few years ago, vines of American bittersweet climbed up and wrapped around one of the tree’s lower limbs. Bittersweet is a menace. It’s a creeping vine with twining stems that can grow the length of a telephone pole. The stems wrap around other plants and trees, choking their growth and eventually killing them, unless the bittersweet is cut away.

Under assault, the limb on our oak tree weakened and split. My uncle had to saw the limb off near the trunk.

I walk past the tree every day. Ever since I was diagnosed with stage IV colon cancer in March of 2018, I have made a ritual of walking. After my surgeries, sometimes I’d only walk 50 feet. On my best days, I would walk a few miles, past the oak tree and down the dirt path that leads to the ocean. 

In the early months of cancer, those walks were full of resentment. 

Intellectually, I understood that life never promised fairness. When you look around the world and see the suffering, this has always been evident. Still, I questioned why cancer had come for me at age 41. Certainly my wife and daughters didn’t deserve it. 

Walking past the oak tree, I would focus on the sprawling thicket of bittersweet and thorny brambles. The vines were hard at work, wrapping around nearby saplings and the roots of bushes. 

The bittersweet was a maddening reflection of the cancer in me. 

Lethal. Uninvited. Relentless.

What an awful design by mother nature, I thought. I imagined taking a flaming machete and going on the warpath. I wanted to chop and burn every last stem into oblivion. Of course, I knew it would be futile. One has to pick his battles.

So how do you confront our enemies in nature?

For me, I had to start looking at bittersweet and cancer from a different perspective. These are not sentient beings. They don’t have thoughts or feelings. They have no intent to kill. They evolve with a singular purpose — to replicate and to survive. This competitive drive is the core design of all living things, whether it’s a vine or a cancer cell. 

Sure, I can rage against the flaws of our design. 

But my quest to be cancer-free doesn’t feel right when I’m dwelling in resentment and hate. It feels a lot better when my mission is grounded in my fierce love of my family and friends. There are still plenty of moments when I experience the more destructive emotions. I’m OK with that. I just don’t get stuck there anymore. 

This shift made it easier for me to see the core lesson offered by threats to our existence: that life is the ultimate privilege. 

On my daily walks, I began to focus on the oak tree instead of the brambles.

Yes, the tree was damaged. It had lost a significant part of itself. 

And here it stands, undaunted. It continues to weather every gusting wind, every rainstorm, and the deep freeze of Maine winters. Its leaves still return each spring, glorious as ever. It is my giving tree. I spend time with it every day, for communion and to offer thanks for its inspiration. 

In the tree, I see myself. 

I’ve lost parts. I’ve been damaged. Yet here I am, standing my ground, living with joy and defiance in the face of the storm.

A cocktail mixer for patients and oncologists? Yep.

Hi friends! I volunteer as a media relations specialist for COLONTOWN, my go-to online community for science and support related to colorectal cancer. This is the press release I sent out today. If you know any journalists who write about health and cancer care, please pass it along. Thank you!

Trevor


COLONTOWN patients to challenge traditions at ASCO conference

What happens when patients throw a party for oncologists? Find out next week.

SAN FRANCISCO, Jan. 14, 2020 — Even in the age of “patient-centric” medicine, actual cancer patients are still few and far between at major oncology conferences, such as ASCO’s Gastrointestinal Cancers Symposium, to be held here next week.

The patients from Colontown intend to change that. 

More than a dozen patient leaders from the global colorectal cancer group will converge on the Moscone Center from Jan. 23-25. They will network with leading oncologists; push for stronger patient representation in research; and report back to their 5,000 active members.

The patients aren’t coming to San Francisco to crash the oncological party. Instead, they’ve decided to throw one themselves.

Colontown is inviting oncologists and researchers to “Cocktails on the Roof,” to be held from 5 to 7 p.m. on Friday, Jan. 24, at the Virgin Hotel. The party is meant to spark understanding and collaboration between leading providers and patients. It’s also a chance for patients to thank oncologists for their important work. The invite-only event was made possible by a corporate donation to Paltown, the non-profit organization that supports Colontown. 

“As far as we know, this will be the first party thrown by patients for doctors at an ASCO conference,” said Erika Hanson Brown, who founded Colontown in 2010. “In the old model of cancer care, there was a clear line between  ‘us’ the patients, and ‘them,’ the doctors. In the new model, we are collaborators, working together toward the goal of better outcomes.” 

Colontown improves the quality of life for people with colorectal cancer, through shared patient-to-patient knowledge, experience, and support, Brown said. 

Oncologists who support the mission of Colontown include Dr. Cathy Eng of Vanderbilt University, Dr. Axel Grothey of West Cancer Center and Research Institute, Dr. Christopher Heery of Precision BioSciences, and Dr. Pashtoon Kasi of the University of Iowa.

“Colontown empowers colorectal cancer patients on their journey through the complex world of treatment choices and shared decision making with their oncologic providers,” Grothey said.

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‘About Us’ and photos attached To arrange interviews with Erika Hanson Brown, Colontown patient leaders, and participants in the ASCO GI conference; or if you are a reporter interested in covering the event:

Media Contact: Trevor Maxwell

207-286-4431

tmaxwell@colontown.org

COLONTOWN — www.colontown.org

Cancer friendship: Bromance edition


Dec. 17, 2019

Last Friday evening, I took our 12-year-old to softball practice at the indoor batting cages in Portland.

I was reading a book in the car when I got a text from Sarah, my wife.

“Can you come home right after practice? Someone is at our house who wants to see you. I’ve been sworn to secrecy about who.”

Hmmm. OK. 

So we got home, walked through the door, and boom — out jumps this mountain of a man, arms outstretched for a huge bro hug.

It was my college roommate, Erik Ingbretson. He had flown to Maine from Chicago, without any heads-up. We had seen each other only a handful of times in the past 20 years. Turns out I’m not great at long distance friendships.

So here was Erik, standing in the middle of our kitchen, holding a stocking full of gifts for our entire family.

About a month ago, Erik learned about my stage IV colon cancer.

His wife, Ali, who went to college with us, had read one of my blog posts. Right away, Erik knew what he had to do. He was going to surprise me with a holiday Hallmark moment, bro style. He booked a flight, rental car, and hotel (in case, you know, we weren’t home). He swore people to secrecy, and gave his mission a hilarious and perfectly Erik code name: “Operation Christmas Lobster.”

There are a few things you need to know about Erik.

First, the exterior. Barrel chested. Broad shouldered. Jaw made of granite. At the University of Iowa, he earned a walk-on spot on the football team. He used to benchpress the couch in our apartment — with Sarah and I sitting on it. 

For the most part, Erik enjoyed playing the role of midwestern jock. In high school in Illinois, he was nicknamed The Norwegian Nightmare, thanks to his ferocity on the football field and basketball court. At Iowa, he was known to chug beer from an oversized glass stein. 

But beneath that exterior, Erik has always been complex. He’s a sensitive soul with a big heart, a strong desire to learn, and more hobbies than anyone I know.

Erik is passionate about family, woodworking, metalworking, fishing, cooking, games, history, folklore, ancestry, psychology, and probably much more.

Every year, Erik orchestrates a Halloween party for 200 guests in the backyard. For months in advance, the neighborhood kids come over to his house and work with him to engineer and build spooky, automated attractions.

When Erik showed up last week, we picked up right where we had left off in Iowa, except it was even sweeter. 

We’ve matured, thank God. 

Now we can share our experiences as men, with the wisdom time imparts. Late into the night, our conversations flowed from the serious (cancer, life changes, responsibilities, what it’s like to be a man in today’s world) to the hilarious (quoting classic movies, remembering the Halloween we dressed up as Canadian basketball players from the 1970s, with headbands, wigs, and tight shorts). 

By the time Erik departed on Sunday, my face hurt from smiling. If there’s a medicine for the soul, this was it.  

Erik didn’t come to Maine to say goodbye to me. He fully expects me to survive this cancer, and he hammered that point home many times. No, he came to Maine for kinship. Even though we haven’t been in touch, Erik and  I are family. 

If your gut is telling you to visit an old friend, no matter if they have cancer or not, now is the time. 

If you have a list of excuses for why you can’t, write them down on a piece of paper and then burn it in symbolic rebellion. Life can change on a dime. You might not get another chance to spend time together.

So book that ticket, get on that plane, show up at that doorstep (you can also call ahead, if that’s your style). Bring your whole self to the experience.

Thank you, Erik.

“Operation Christmas Lobster,” fully accomplished, can take its rightful place in Norwegian lore.

A cancer dad's double life

Well, today marks my 43rd full turn around the sun. 

I walked through the snow and slush with Grace the dog. I worked on my website. I took the girls to rent skis for the winter. We sat down for dinner as a family, then piled onto the couch to watch a holiday baking show. 

In my book, this is a damn good day.

When you’re living with metastatic cancer, especially as a parent of school-age children, you live a jarring double life. 

In one, you believe and hope you will live long enough to see your kids graduate from high school, to see them make an impact on the world, perhaps even to meet their children. 

In the other, you feel the crushing burden of time. You are frantic to pack in a lifetime of love and memories now, because you don’t know when your time will come (please no “don’t think about death” comments. If you’re stage IV, it’s part of the job description). 

So here I am as a father and a cancer patient, racing down the razor’s edge.

Sage is a freshman in high school. Elsie is in 7th grade. We function in that chaotic, high energy transition between the stuff of youth and the stuff of young adulthood. Each day careens toward the next, with the bustle of the girls getting ready for school in the morning, and the bustle of homework and sports and dinners in the evening.

During the past few weeks, Sage sang in her first high school chorus concert. Elsie had her first middle school dance. 

I set my intention to draw out these moments, to linger in them. It is pure joy. Yet when each distinct moment concludes, I’m left almost deflated, powerless to slow down time. 

The philosopher and farmer Wendell Berry wisely observed that humans suffer because we tax our lives with forethought of grief. No doubt, much pain can be avoided when we condition our imaginations not to wander. 

To focus without distraction on right here, right now. 

To let go of tomorrow’s troubles.

Of course, letting go is easy in the abstract. It’s far harder to achieve in real life.

Because, man, I’m attached to these humans I share this life with. I love their unique voices, the way they walk, the scrunched-up faces they make when it’s too early and too cold to get out of bed on winter mornings. I love the way Sage sways just a bit from side to side when she sings on stage. I love Elsie’s laugh when she has her headphones on and she’s listening to a book no one else can hear. 

I love their warmth, their breath when they hug me, their spirits. 

I love how, after 26 years into our relationship, Sarah and I still look forward to reconnecting after our day’s work is done.

So when I’m troubled by forethought of grief, I remind myself that’s the natural byproduct of love. I let the grief pass through, and I search out the next moment of connection. After all, any man who lives in such an abundance of love, well, that’s one lucky guy.

Finding my people in COLONTOWN


Published Nov. 22, 2019, CURE Today

Click here to read the article on the magazine website

By Trevor Maxwell

What does colorectal cancer look like up close, in person?

It’s a proud mother and wife from Kansas City who just went through her 83rd chemo session and who is determined to watch her son swim at the Big Ten Championships in February.

It’s the kind smiles and tired eyes of a couple from northern California who lost their 37-year-old son to colorectal cancer a year ago, and who are stepping up their advocacy work so other parents won’t have to endure that grief.

It’s a marketing professional who refused to settle for any old medical team, so she moved her family from Chicago to Los Angeles, where a world-class oncologist gives her the best shot at making memories with her husband and 2-year-old daughter.

These are some of the remarkable friends I’ve found in COLONTOWN, an online hub for nearly 5,000 colorectal cancer patients and caregivers.

COLONTOWN is structured in private groups on Facebook. The core “neighborhood” is called Downtown. From there, members can participate in more than 100 smaller neighborhoods. For example, Four Corners is for Stage IV patients like me, Stoma City is for those with ostomies, and the Corner Cupboard offers solutions to common side effects.

Each neighborhood is overseen by hosts who are patients or caregivers themselves. They answer questions and share evidence-based news and resources.

To me, this is the “patient-to-patient” movement in action. It’s all about the real-time exchange of information and experience related to treatment options, clinical trials, cancer centers, oncologists, research, complementary therapies, and anything else that might help patients live longer.

Earlier this month, I had the pleasure of meeting 25 members who gathered in San Diego for an “Empowering Patient Leaders” workshop. During the weekend event, a small group of COLONTOWN leaders trained me and other newcomers on the latest advances in CRC treatment and on how to serve as neighborhood moderators.

To be honest, I didn’t know what to expect. What would my fellow patients be like? Would it be a gloomy weekend?

Nope, not at all.

This was a group of smart, talented, kind, upbeat and motivated people.

I realized I was participating in a think tank with the potential not only to change individual lives, but to change the delivery of CRC care. That might sound like a stretch to outsiders, but folks in our shoes don’t have time for small steps.

Many of the San Diego crew are stage IV patients. Our original colon or rectal cancer has spread to other parts of the body. Many of us are relatively young, in our 30s and 40s, with spouses and kids.

We are well aware that most patients with metastatic CRC are not alive five years after diagnosis.

I was the outlier at the workshop — the only patient there with the “hot” kind of tumor biology that makes me an ideal candidate for immunotherapy, which is my current treatment. The long-term outlook is unknown, but immunotherapy gives me realistic hope.

Trouble is, only about 5% of all metastatic CRC patients have this biological profile. The other 95% have “cold” tumors that rarely respond to immunotherapy.

This hard fact makes the San Diego workshop participants even more remarkable. Here they are, dedicating a significant chunk of their time to help other patients, knowing the next treatment breakthroughs might come too late to save their own lives.

I came away from San Diego motivated, and with new friends.

One of them is the Manju George, a rectal cancer survivor from Omaha, possessing a brilliant mind and a heart of gold. She is a scientist-researcher, and one of the COLONTOWN leaders. We engaged in a debate over whether CRC patients are brave, simply by living with our disease.

She said no, because cancer isn’t a challenge we asked for.

I looked around the conference room, considering the surgeries and chemo infusions, CT, MRI, and PET scans. I thought about the families. I thought about Manju, who spends so much time selflessly educating others, encouraging us to stand up for ourselves, and connecting us with the brightest minds in the field of cancer care.

Sorry Manju, I’m not backing down on this one.

You are what courage looks like to me.

Scan results: It’s complicated


Got the results today from my abdominal MRI and chest CT.

Not what we were hoping for.

The single metastasis in my liver has increased in size, from 1.5 cm to 2.1. I’m only 12 weeks into my new treatment, immunotherapy drugs, so it’s hard to say whether the therapy is working or not. Here are some possibilities:

  1. This is real-deal progression and the immunotherapy isn’t doing the job. Oh shit. 
  2. The tumor continued to grow a little bit until the drugs kicked in, and now they are working. Better. 
  3. The size increase is actually due to “psuedoprogression,” which is inflammation at the tumor site caused by my killer immune cells attacking the cancer. If this is the case, the next scan hopefully will show stability or regression. Again, better.

But here is the shittiest part of today. When I scanned in August, before I started immunotherapy, the radiologist pointed out what he called “post-operative collections” in my abdomen. The idea was that these were benign collections of fluid that built up after my liver surgery in May, and they would clear up. Sounded fine at the time.

Unfortunately, those were not fluid collections. Looks like they’re other tumors. There are two sizable ones near my stomach, as well as several tiny ones around the border of my diaphragm. The largest was 4.1 cm in August, and now measures 4.7 cm. Again, we can’t be sure if the immunotherapy is working or not.

This means that Sarah and I learned today that my cancer has spread inside my peritoneum (the membrane that encases all the abdominal organs). This news has hit us hard. Lots of fear, anxiety, and tears.

We are strong in our beliefs, and we hold onto realistic hope. We hope the immunotherapy is just on the verge of turning this thing around and wiping out my disease. My CEA, which is a measure of tumor activity and has been very reliable this whole time, continues to trend DOWN. It was 11.7 before I started immunotherapy, 6.4 at the six-week mark, and 4.2 yesterday. Also, my eosinophils, which are white blood cells that fight disease, are off the charts. These are good indicators that my immune system is fighting hard, and my tumor activity is dropping. We need for those trends to continue. 

Thank you so much for your support through all of this. It means the world to us. It is so hard on Sarah and the girls, and I ask that you think of them, and hold them up in your hearts. I will continue to write and share my feelings about facing this awful disease. 

With love,

Trevor

The nightmares in our cancer closets

Today, I’m nervous.

My stomach is unsettled, a familiar low-level nausea that kills my appetite and makes it uncomfortable to move around. Then, when I think about what’s coming up, the anxiety rises through my chest and into my throat.

My scans tomorrow — an MRI for my liver and abdomen, and a CT for my chest — are the first scans since I began immunotherapy treatment three months ago. 

Immunotherapy is my latest shot at eliminating the cancer in my liver, which spread from the original tumor in my colon. 

My medical dream team (two oncologists and a surgical oncologist) is optimistic about this treatment, because I have a relatively rare form of colon cancer that makes me an ideal candidate for immunotherapy medicines. In some people, this treatment can lead to long term remission or even a cure. 

But it’s far from a sure thing. The scans will tell us if the treatment is working. 

At my last round of scans in August, there was only one small tumor in my liver. We want to see stability (tumor is the same size), regression (tumor is shrinking), or complete response (tumor is gone). 

When I think about getting the results, I imagine the radiologist’s report going something like this: “The liver enhances homogeneously. The lesion previously noted in segment IV is no longer present. There are no other suspicious lesions and no evidence of metastatic disease.”

N.E.D. The holy grail for cancer patients. If you get to N.E.D., you’re doing a happy dance, no matter where you are when you get the news, no matter what the future might hold, no matter what the doctors tell you about your chance of recurring. 

So yes, I imagine that happy dance.

But here’s where cancer really messes with you.

I have dark thoughts, too.

What if the report isn’t good? What if my tumor has grown, and there are more tumors in my liver, and possibly my lungs? When you’ve had lots of scans and lots of bad news, these fears are the sticky residue of emotional trauma.

Today, I have thought about the conversations that would need to be had with my wife, Sarah, and our daughters, if the scan isn’t what we hope for. I don’t want to tell them, yet again, that my cancer is still being stubborn and we need to keep at it. They have kept at it enough. 

As I make this admission — that I’m nervous and having some scary thoughts — I can hear the whispering voices of judgment.

Don’t think negative thoughts about your scans. 

Just think positive.

Imagine your cancer is gone, and it will be gone.

These voices — real and imagined — have swirled around my headspace over the past 20 months since diagnosis. People close to me, as well as strangers, have given me well-meaning advice along these lines. 

If you are a fellow patient and this mindset works for you, more power to you. 

It doesn’t work for me. 

Last year, I gave the “only positive” mindset a try. After my first liver surgery, I was absolutely certain I was cured. I visualized a completely clear body. When a negative thought emerged, I did everything I could to shove it out of my consciousness, usually by means of distraction. 

That approach made the emotional fallout even harder to deal with, when my bloodwork and scans showed a recurrence. 

It felt like failure. Maybe I just wasn’t thinking, eating, or believing the right way. As a culture, would we put that same expectation on people with other health conditions?

Would we say, “Imagine your pancreas is fully functional, and it will be,” to a person with Type 1 Diabetes?

How about saying “Just believe you can walk” to a person who has suffered a traumatic spinal cord injury?

When I realized the “only positive” mindset wasn’t a fit for me, I had to find a different approach. Gradually, through counseling, reading, talks with friends, and much self-reflection, I latched on to a piece of wisdom from the Buddhist traditions. 

Be open to all experiences and outcomes, but attached to none.

Take, for example, my scans tomorrow. I’m open to all possibilities. I’m hopeful for great results and I imagine that will happen, but I don’t cling with desperation to that outcome. I acknowledge the possibility of receiving difficult news. 

This allows me to focus more on the present moment. It’s a mindset that reflects my spiritual beliefs — that I am a creation, not a creator.

It also reflects my beliefs on science and medicine. I can improve my health through positivity and taking care of my body and mind. Science has proven this. But that power is limited. I don’t believe I have omnipotent control of my health. 

Far wiser men than I have tried, and failed, to think themselves to a cure. 

It’s normal and sane to be afraid. In fact, fear is perhaps the best evidence of my humanity. It means I want more time on this earth with my family and friends.

So, when the anxiety rises and the dark thoughts come, I try not to push them away. Instead, I get right up close to them. I examine them in compassion for myself. And when they pass, which they always do, I appreciate the light more than ever. 

Thank you, Dr. Tom Marsilje

https://www.sandiegouniontribune.com/opinion/story/2019-11-07/colontown-connects-cancer-patients-for-support-education


By TREVOR MAXWELL

I never met Dr. Tom Marsilje.

But thanks to him, I’ve got a better shot at beating cancer.

Tom was a cancer medicine researcher from San Diego. At age 40, on the day he presented findings about a promising drug he helped develop, Tom was himself diagnosed with colon cancer.

For the next five years, with relentless energy and optimism, Tom pursued a cure for his disease while also devoting countless hours to helping others. The once introverted scientist became a prolific writer and a champion for patients around the world.

Sadly, Tom passed away two years ago, at age 45.

I first learned about Tom six months later, when I was diagnosed with stage IV colon cancer. Like Tom, I was relatively young at age 41, with a wife and two young children.

In those early months after my diagnosis, I was desperate to find reliable information. Tom’s writings were a treasure trove. On his blog and through his posts to colon cancer support websites, I learned more from Tom than I did any other patient or doctor. His posts introduced me to immunotherapy breakthroughs and exciting clinical trials. Little did I know at the time how important that information would be for my own journey.

More than anything, Tom’s writing was kind. It was generous and full of his heart and wry humor. He was honest about our disease, never denying its cruelty and lethality. He was also honest about his hope, and his determination to live with joy, diagnosis be damned.

Tom’s posts also led me to Colontown, an online support group and information hub for nearly 5,000 colorectal cancer patients and caregivers.

Members of Colontown can connect with people in dozens of “neighborhoods,” tailored to their own interests and specific cancer traits. When Erika Hanson Brown founded Colontown in 2011, she understood that local oncologists can’t be expected to keep track of hundreds of clinical trials that might be relevant to a single patient. Instead, patient leaders could tackle that job, and communicate directly with other patients online. Erika invited Tom to help lead a Colontown neighborhood for this purpose, and he thrived in the role.

From that one original neighborhood focused on clinical trials, there are now more than ten, overseen by patient-administrators who have backgrounds in science. There are conversations happening in those spaces that, in my opinion, are saving lives.

This weekend, in Tom’s hometown of San Diego, I’ll have the pleasure of meeting several Colontown leaders in person. I’m attending the group’s Empowering Patient Leaders workshop. The idea is for newer members to learn best practices for helping other patients via the Colontown neighborhoods. I’ll also bring lessons learned home to Maine, where I can apply them in my relationships with local organizations.

For colorectal cancer, the need for patient leadership could not be more clear.

With about 150,000 new cases each year, colorectal cancer is the second most common cause of cancer death in the U.S. Education and screening have slightly improved the mortality rate for older Americans, but we’re seeing a disturbing rise in CRC among younger adults.

A person born in 1990 has double the risk of colon cancer, and four times the risk of rectal cancer, than a person born in 1950. Many of these young people are otherwise healthy and have no major risk factors, such as poor diet or lack of exercise, leaving scientists at a loss to explain the uptick.

For me, after multiple surgeries and chemo failed to keep me cancer-free, I recently started a regimen of immunotherapy drugs I first learned about from Tom. The drugs were still in clinical trials when he wrote about them, and were just approved last summer for metastatic colon cancer.

New members join Colontown every day. Some have early stage disease. Some have just been told they are stage IV with metastases to their liver, lungs, brain, or bones. They talk about their lives and post photos of their spouses and kids. They feel just like I did: shocked, scared, and pressured to make life-or-death decisions.

I don’t know how much time I’ll have on this earth. None of us do. But I know this: I want to be one of the CRC warriors who reassure the newcomers.

We’ve got your backs. You’ll never have to face this alone.

From everything I’ve learned about Tom, he wouldn’t have it any other way.

Portland Press Herald column: ‘It’s OK to be broken’

MAINE VOICES

Portland  Press Herald, Nov. 7, 2019

By Trevor Maxwell

For months after I was diagnosed with colon cancer, all I wanted was to find a way out.

At night, my dreams were about mazes I couldn’t escape and riddles I couldn’t solve. I would wake in a sweat, my heart and temples pounding.

In my rational mind, I understood the world never promised anyone fairness. But that couldn’t lessen the pain I felt for my wife and daughters, who were 11 and 13 years old at the time. They didn’t deserve this.

In rapid succession I had colon surgery, chemotherapy, then liver surgery. It was physically and emotionally exhausting. There were times when I was on my knees in the living room, unsure of whether I would get up. For hours, I allowed my mind to drift into the past, to our lives before cancer, as if somehow there was a way back.

Anyone would understand this response. It’s the instinctive longing of a wounded heart. It’s also a trap. Dwell in your past long enough, and you’ll end up staying there for good. Thankfully, my family and friends pulled me out. They encouraged me and loved me every day, reminding me that life needs to be lived in the present.

Now, nearly two years since my diagnosis, I hardly recognize that person who dwelled so often in his grief.

My inward focus, which was debilitating at times, has gradually been replaced by an outward focus. Sadness has been replaced by a fierce determination to live fully, diagnosis be damned. Fear has been replaced by deep gratitude and a desire to help others. Of course I feel sadness and anger from time to time, just like anyone else, but I don’t get stuck there.

I’m still in treatment for stage IV cancer, but I’m enjoying life, and I have realistic hope.

The immunotherapy medicines I started this summer often lead to long term remission, even a cure, for people with my particular cancer biology. In this way I’m lucky. Only five percent of people with stage IV colon cancer have the type that is responsive to this new generation of medicines. We need to find treatments that offer similar hope to the remaining 95 percent.

Which leads us to my reason for writing. I guess you could say this is me stepping into the world of patient advocacy.

I’m a communicator by training. I was a reporter for the Press Herald, and since 2011 I’ve worked as a self-employed writer and public relations consultant. By combining this background with my experience as a patient, I find myself in a unique position to help.

The need for advocacy is clear. Colorectal cancer, a term that encompasses cancers originating in the colon or rectum, is the second leading cause of cancer death in the U.S., behind lung cancer.

About 150,000 new patients are diagnosed each year, divided nearly equally between men and women. Yet, we don’t often hear about CRC in the news, like we hear about other cancers.

This coming weekend, I’ve been invited to San Diego to participate in a workshop hosted by Colontown, a dynamic online community of colorectal cancer patients, caregivers, and survivors.

Colontown is much more than a support group. It’s a virtual think tank, where patients exchange ideas and moderators keep members informed on the latest scientific developments. At the Empowering Patient Leaders workshop, I’ll learn best practices for helping other CRC patients, and I plan on putting those lessons to use here in Maine. 

We need to understand why more young people are developing CRC. Most of them are otherwise healthy and have no major risk factors. We need more funding for research, fairness in health insurance, and stronger patient voices in drug development, clinical trials, and the day-to-day practice of oncology.

Stepping up as a patient advocate also means being honest about my own experience. Popular culture wants our cancer patients to be brave and optimistic all the time.

That’s an unrealistic bar that no one should be expected to meet. Personally, I’ve struggled with depression, anxiety, and shame, and I’ve spoken with many others who have faced those struggles as well.

So, my message to cancer patients is simple: Be kind to yourself. It’s OK to feel broken. Keep moving forward. If you break, that doesn’t mean your fight is over.

It means your fight is just beginning.

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Milepost: Liver surgery, take two

May 6, 2019

Hi all, I hope you are enjoying this sunshine-filled day! As some of you already know, my cancer is being stubborn.

So we just need to be more stubborn.

CT and MRI scans over the past few months confirmed that I have another tumor in my liver. So on Thursday, I will be headed to Central Maine Medical Center for a second liver surgery. All of my “dream team” doctors (two oncologists and one surgical oncologist) are on board with this decision.

I’m feeling hopeful and determined, thanks to the incredible support of Sarah, Sage, and Elsie. Every day, they fill my life with joy, and they inspire me with their love, courage, and resilience.

One thing I’ve learned through this journey is that you must focus on one step at a time. For us, the next step is another surgery. Then I will have an MRI three months down the road. If I have another recurrence, we have options to face it.

But we are focused on the healing power of love, and we truly believe I will be cancer-free, no matter what the road looks like, or how long it takes.

Amidst the uncertainty, there is so much good in our lives. Incredibly, Sarah earned her Master’s degree in Educational Leadership. This required three years of evening classwork while working fulltime as a teacher and then as Assistant Principal at Skillin Elementary School in South Portland, and while caring for our family through my surgeries, recoveries, chemo, etc.

Sage is enjoying outdoor track, music, and voice lessons. She is blossoming into quite the singer. Elsie continues to spend most of her spring and summer playing softball, and I’m helping to coach her Middle School and Little League teams. We enjoy the company of family and friends.

Yes, cancer has changed our lives over the past year. And yes, it is really, really hard to face. But it also focuses our attention on what matters most.

As I’ve said in prior updates, we appreciate your support via texts, emails, calls, letters, etc. but please understand we might not be able to respond soon, or at all. We will try to provide updates on this site about how things go, and what the next steps might be. If there are specific needs that we have, we will let you know.

Thank you all so much for your support. No walls. Only hurdles.

Trevor, Sarah, Sage, and Elsie