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.

###

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