I turned to fix a piece of art on the front wall in the living room, and right at that moment, Kelsey, the kind and talented woman hired to help clean our home, reached for the vacuum, and Zara lunged.

She didn’t bite, but she lunged and growled, and while I was able to swoop in and usher her upstairs without an issue, it’s the second week in a row it’s happened.

Typically, I’m not home when Kelsey is here, and the dogs have zero issues with her and her team coming into the home and doing whatever the home calls for. But for the last two weeks, I have been here, and it’s been a serious issue.

Zara also growls whenever Julian, Todd’s 23-year-old son, comes home. Though he says it’s always significantly less when I’m not home.

Zara is a rescue who, like Briggs and me, has suffered many changes over the last two years. She also had to suffer the moves, long-ish periods without me, and my perpetually changing medical state.

All things considered, she’s been great. She has allowed me to be entirely consumed by my health and then Briggs’s for these past two catastrophic years.

But now, she’s clearly telling me she needs more from me.

It’s her turn.

And that’s more than fair.

Still, yesterday, confronting the fact that I’m back to needing to hire a trainer, put her on anxiety meds, and be far more consistent with her day-to-day schedule made me feel like a horrible dog mom.

On the way to the grocery store, I was overrun with fear about having to separate her from my family and falling so short of being the family she needs.

Before I let fear immobilize me, I called Todd. He’s away on a Jeep trip. I confessed how my thoughts were terrorizing me, and he brought me back to truth:

“That’s not where we are. We are taking next steps to make sure Zara gets everything she needs from our pack.”

We are a pack.

That’s what support sounds and feels like.

It’s telling the truth when my brain has moved into self-inflicted imaginary terror, while also telling the truth about the solid, actionable steps we can take to prevent the worst things from getting anywhere close to this life.

Our life.

I can still get scared and get ahead of myself.

And we can have a plan.

These aren’t two opposites being true at the same time.

These are simply two truths.

It was likely the summer of second grade, which would make me eight and my sister, Lindsey, six. She, my mom, and I were in Maine, taking a weekend to go to her father’s beach house in Saco.

We stopped for donuts. Either my sister or I had to pee, so we both went to the bathroom, but I remember once we got in, I locked the door. We did what we had to do, and then, after washing our hands, I attempted to get us out of the locked door and failed.

And failed.

And failed.

I’m going to say that we both tried multiple times, but given our age and my kiddo headspace, if Lindsey told me I never let her have a crack at it, I’d believe her.

What I remember is worrying we were stuck, and at some point we both started slamming all of our tens of pounds against the door, slapping it with our flat hands and screaming for our Mom.

I do remember Mom coming to the door with what sounded like an employee, and the two of them attempting to guide us through how to successfully unlock the lock. All the while, my brain was forging a plan of how my sister and I would spend the rest of our natural lives together in that small bathroom.

At least we had water and a toilet.

After what I remember feeling like tens of hours, which I’m sure was only minutes, and potentially only seconds, the door opened, and we both flung ourselves into our Mom’s arms.

I was never scared of being alone. Aside from being with my sister, I’ve never really felt alone, because my neurodivergent brain would never allow for it.

Now, trapped, that’s something else.

Being trapped has always felt real, and being trapped with minimal resources was even worse, because while I could make songs and stories in endless supply, eventually I’d run out of paper products for props and biological use.

Cancer has never made me feel alone. For starters, there are too many people, sadly, who are also diagnosed. There’s some devastating statistic that 1 out of every 2 Americans will be impacted by cancer, either with a direct diagnosis, like me, or through the direct diagnosis of an immediate family member, like everyone in my immediate and extended family.

It’s difficult to feel alone with stats like that, but far too easy to feel trapped.

Trapped in toxic practices. I mean, I’m still driving around in a gas-powered car and using disposable cups when the house is full. How can I really be upset with the Earth fighting for her life the best way she knows how: kill the humans.

Clearly, there are about a zillion other ways I could curb my existence to be better for the Earth, but even listing them feels boring, for both you and me.

Trapped in financial uncertainty. The whole truth is, a few years after I separated from my husband, I bought a house with all my own money and kept it afloat with all of my own money as well.

But just always just afloat.

Then, I got terminal cancer during a time when I had just started out in entrepreneurship. As many new entrepreneurs in America will attest, benefits, such as health, dental, and life insurance, are not the best when you start building a business.

Oh, and the day I came home from brain surgery, my hot water heater blew...and my oil tank cracked.

How I wish the timing for that busted hot water heater and oil tank were exaggerations.

I took both as a warning from the house:

Amanda, you may survive this season, but your cute little home in this quaint little neighborhood will not.

I refused to lose the house, so, ultimately, I decided to sell. There is a difference.

Fortunately, I had a place to go. Todd, my forever boyfriend, took my family and me in lovingly and without hesitation.

But I’m nowhere near paying, financially, half of what it costs to keep things up and running.

Trapped in size. I’ve been self-publishing for more than ten years. Before here on Substack, on amandathanks.com, a gratitude blog that did little more than help get some things out of my head and into the ether.

No book deals. No viral posts. No undeniable external validation that it mattered.

And if I’m all the way honest, at some points, even here on Cancer Sharks, I’ve had serious internal battles about whether my writing matters.

Then, I watched Alone Australia.

Alone, if you don’t know, is a reality television show for survivalists. Ten people are boated off to uninhabited places, in this case, Southern New Zealand, with nothing but their bows and arrows, clothes, backpacks, and ten survival items they’re allowed to pick. Can’t be a gun.

The one who stays out the longest wins $250,000 and bragging rights. Contestants can tap out whenever they want. If you want to watch the series, it’s streaming on Netflix right now, and even if you don’t, here’s how it ends:

The openly neurodivergent dude wins.

Not because he had the most protein. He didn’t.

Not because he explored the most land. He didn’t.

Not because he managed never to get sick. He didn’t.

Not because he had the best sleep. He maybe had the worst.

But because he prioritized his mind.

Some days, all he did was make rope out of leaves. He used sticks to make a spinning wheel and spun beach debris into this yarn-like substance to weave things he didn’t really need.

He told his brain he wouldn’t quit. He would accept fate, say, if he got medically extracted, but he would not quit.

Instead, he would make things.

Keep his busy mind useful.

Say nice things to himself and never really be alone.

And he won.

And I know, this is just one sorta silly TV show that literally brings humans to their brink for...sport. Can we call it sport? I guess.

And being locked in that bathroom wasn’t really traumatic.

But maybe the sum of all these things is greater than its parts.

Because when I was eight years old and thought I might spend the rest of my natural life trapped in a donut-shop bathroom, my brain immediately started figuring out what I could make.

Songs and stories in endless supply.

Decades later, I watched another neurodivergent brain respond to being trapped by making rope out of leaves and weaving things he didn’t really need.

And somewhere in between, I spent more than ten years making things too.

Stories.

Blogs.

Cancer Sharks.

No guarantee of a book deal. No guarantee of a viral post. No undeniable external validation that any of it mattered. Maybe that’s not the only way to measure whether something matters.

Maybe being trapped is inevitable. In a bathroom. In cancer. In finances. In a body. In the size of whatever you’re trying to build.

And maybe the way through isn’t always getting yourself out.

Sometimes, it’s keeping your busy mind useful.

Sometimes, it’s saying nice things to yourself.

Sometimes, it’s making rope out of leaves.

And sometimes, it’s making songs and stories in endless supply.

Located in the very small town of Phippsburg, Hermit Island is a stretch of coastal private property open to the public, a sliver of adolescent heaven surrounded by the roaring Atlantic.

The campground still accepts only cash or checks. Tents and pop-up trailers only. No RVs. No electricity or water hookups at the sites. There is a camp store, a snack shack, and not much else to interfere.

There are rocks to climb, cliffs to jump from, seaweed to explore, clams to dig, waves to catch, and trails to hike and bike. For Lindsey and me, there were always friends to make.

At Hermit Island, we got drunk, played with fire, stayed in the water until we pruned, and put what felt like hundreds of miles on our bikes. We ate every meal by the radio, with the local country station at a fair volume, hosted epic ping-pong tournaments, drank Slush Puppies to our hearts’ delight, fed dozens of dollars in quarters to the World Cup pinball machine, made out with boys, plural, in the dunes, and once refused to return to our tents until after sunrise.

Hermit Island was the highlight of every year. The great release. The place where we let go completely.

It tracks that our parents stopped bringing us when we were deep into high school. They were not interested in any Hermit Island babies coming home with us.

I did not return until my forties. To my delight, very little had changed beyond some of the rules. Music was no longer allowed. Neither were fires on the beach, dogs, or teenagers roaming wherever they wanted after eleven.

It is possible my generation ruined it for everyone who came next.

We earned that freedom.

What surprised me most upon returning was how quickly the feeling of being alive settled back into my body as I climbed the familiar steep hill into the campground.

This week marked my second visit in my forties. We stopped for one too-short day on our way north to visit dear friends.

A gentle mist covered most of the island. The water and sky nearly disappeared into one another, and the familiar landscape looked softer around the edges.

This month was my final immunotherapy treatment for now.

As someone living with Stage IV melanoma, I do not get the clean certainty of “cured.” Right now, my scans show no visible evidence of active disease. Right now, I do not need more treatment. Right now, I can put more of my energy toward healing from what treatment left behind.

The words right now matter.

This could remain my reality. It may not. There is no clean line separating diseased from cured, danger from safety, before from after.

There is only the gray.

Standing on Hermit Island beneath a sky that blurred into the Atlantic, I remembered that gray does not mean there is nothing to see.

The island is still here. Still beautiful.

There were five of us on the trail, all Living Beauties, women living with serious cancer diagnoses. Some, like me, are living with cancers that are considered terminal.

We were in Murrieta, California, hiking a two-mile loop that wasted no time introducing itself. The path climbed almost immediately, the dirt scattered with red rock and loose pebbles that made every step a little less certain than the one before it.

For reasons I can’t explain, I took the lead.

One by one, the others fell in behind me. We climbed in conversation, in silence, and eventually in sweat. By the time we reached the top, our faces had that glazed-donut look.

That’s when Stacy smiled and said, “You’re a good leader.”

I laughed and told her I’d heard that before. I still don’t know whether it comes from a career spent leading teams or from growing up as the oldest of four girls. Maybe both.

But somewhere between California and Boston, her comment stopped feeling like a compliment and started feeling like a question.

What kind of leader do I actually want to be?

I’ve been asking myself that a lot lately as Cancer Sharks continues to grow.

For months I’ve described Cancer Sharks as a storytelling platform. An advocacy organization. A community.

Those things are true.

They’re just no longer complete.

What I keep coming back to is the way I experience my own cancer care.

People often imagine medicine as a hierarchy. Doctors and researchers on one side. Patients on the other.

That hasn’t been my experience.

My oncologist isn’t my superior.

He’s my teammate.

The nurses who know my name, the researchers searching for better treatments, the psychologist helping patients navigate impossible days, the women I met on that mountain, the friends I’ve made through cancer, and me. We each bring something different to the table.

The scientists bring scientific expertise.

The clinicians bring medical expertise.

The rest of us bring lived expertise.

None of those forms of knowledge is complete on its own.

The future of cancer care deserves all of them.

Maybe that’s what Cancer Sharks has been trying to become all along. Not a place that speaks for people living with cancer. A place that works with them.

A place that helps build the table where science, medicine, and lived experience come together as partners to improve the future of cancer care.

Because I don’t want a seat at the table.

I want to help build a table where there’s room for everyone who belongs here.

When I mentioned that to my ex-husband, he said the psychic was probably right and told me to reach out to his friend, a longtime Fenway vendor.

They were both right.

Through that connection, I got tickets for night three of four. Todd agreed to come because he loves me, not because he knows every Noah Kahan song the way I do, and the way so many other people in the park clearly did too.

I knew there would be a crowd. I knew Fenway would feel magical, the way it always does to New England kids raised on the hometown team. I knew I would sing, dance, and probably cry.

What I did not know was that I would end up sitting next to a woman whose father had been in the first clinical trial for the immunotherapy that saved both his life and mine.

Once I understood that, before the sun had even gone down on a 33,000-person singalong, I dug through the bottom of my purse and found a rolled-up Melanoma Cancer Sharks sticker from the very first batch I ever made.

I did not know it was still in there. The second I found it, I knew exactly what to do.

When the applause died down, I handed it to her.

“Please give this to your dad,” I said. “With my eternal thanks. He saved my life.”

She smiled, teared up, took the sticker, and said she would.

That was all.

A small exchange in a loud stadium.

But some moments arrive already glowing.

And all night, I kept thinking about how survival moves. From trial to treatment. From stranger to stranger. From one family to another.

All my love.

Still sitting in the pantry.

Just in case.

We threw the cans away.

My grandparents had only been children during the Depression, but hunger, scarcity, and the fear of not having enough had clearly stayed with them for life.

I remember going through the house and laughing at the expired food. Then crying. In my family, grief and dark humor have always gone together.

This past Sunday, while reading a Globe piece about cancer survivorship and the physical, emotional, and financial aftermath so many of us live with, I kept thinking about what my grandparents had held onto.

The cans. The dust. The beautiful, fragile glass my grandfather had brought back from Belgium. The magazines, records, cassettes, and 8-tracks beloved enough to survive move after move, decade after decade. The way people hold on to what once helped them feel less vulnerable.

That is what stayed with me.

Not just that my grandparents had kept too much, but that survival had kept living inside them, long after the original emergency was over.

I know this is true of cancer, too.

Treatment ends, or changes. Scans improve, or don’t. Parts of the body start responding again, or don’t. The body continues. The bills continue. The fear continues. So do the habits of mind illness leaves behind. Stockpiling. Scanning. Bracing. Holding on.

Just in case.

I do not write this to flatten cancer into some universal metaphor. I know what it costs to survive this disease. I know its specific brutality.

But I am beginning to understand that what looks strange, excessive, or irrational from the outside is often just survival that has overstayed its original moment.

Looking back, I regret making fun of the expired cans.

They were not foolish.

They were evidence.

Still, because I am human, the misses hurt more. I could stack the wins high, acknowledge them fully, and still find myself stuck on the one thing that had not gone right. Even when it barely counted in the overall tally.

Lately, I have been doing a physical performance review of my last 21 months.

The review includes three biopsies, a Stage IV melanoma diagnosis, a craniotomy, three rounds of combo immunotherapy, kidney stones, uveitis, adrenal insufficiency, thyroid damage, more than 30 scans and MRIs, five new daily medications including a lifelong steroid, perimenopause, a 30-pound weight gain, stopping work, putting my house on the market, selling it, moving 40 miles away from my son, and putting more than 11,000 miles on my car so I could still see him regularly and show up for his baseball games.

In that same stretch, I kept walking nearly every day, returned to the gym, and am now close to finishing the Livestrong program at my local YMCA.

I also started this blog. Created Cancer Sharks. Hosted our first annual live storytelling event. Started to paint. Reached out for professional help every time the darkness began stealing too much light.

And still, the metric that catches in my throat is the weight gain.

That is the truth.

Not the brain surgery. Not the steroid dependence. Not the adrenal insufficiency. Not even the fact that my thyroid is damaged. The weight.

I wish that were not true. I wish surviving all of this had made me more evolved than that. More grateful. More free. I want to take greater pride in being alive, in still finding joy, in still creating, in still showing up for the people and moments that matter.

And yet there is still an asterisk in my mind. Because I got through all of this, but I got through it in a body that gained more weight than it ever has before.

Yes, more than pregnancy.

And if you are wondering whether I tried a GLP-1, I did. It made the darkness more frightening than it had ever been. So I chose physically heavier over emotionally unbearable.

Which means I am back in the same old review cycle: staring at a long list of what was met, survived, endured, and built, and still getting hung up on the one measure that may not be the most important KPI but somehow still drags on every other win.

Maybe that does not mean I am unchanged.

Maybe it just means the body remains one of the hardest places to stop keeping score.

My mom is staying with me. Because this house is mine.

The house I bought on my own, with my own money, after the divorce.

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1. My son, Briggs, used to play street pickleball with me in front of our house in Andover. By “play,” I mean we batted a pickleball back and forth in the street and made up our own rules.

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