Li- Fraumeni

The Palliative Lens

by Andrew Esch

Anna

“I feel like cancer has taken most of my life the last two years.”

Anna said that to me recently.

Not dramatically.

Not angrily.

Just honestly.

To clarify, she was speaking in plural. Three cancers.

Not one cancer with recurrence. Three entirely separate cancers. The kind of history that sets the mood in a room before anyone even speaks. The kind of history that reminds you immediately that biology does not care about fairness, timing, ambition, youth, or plans.

Li-Fraumeni syndrome, a mutation in the TP53 tumor suppressor gene. This terrible inherited condition that leaves people living under the constant shadow of what might happen next. Cancer becomes a near certainty.

• Surveillance scans become seasons of life.

• Appointments become landmarks in memory.

• Normalcy becomes temporary.

  
  

But what stayed with me was not the genetics.

It was the sentence:

“I feel like cancer has taken most of my life the last two years.”

I have thought about that line all week.

Contrast

Because during those same two years, while this patient was enduring surgeries, recoveries, scans, fear, waiting rooms, pathology reports, and the quiet exhaustion of always bracing for the next thing, my own life was moving in the opposite direction.

• Loudly.

• Beautifully.

• Normally.

My kids growing up.

• One planning for couples match and a wedding.

• Another voted captain of her rowing team.

• Another preparing for psychiatry residency.

• And the third of four kids getting ready to leave for college.

Driving home from clinic that day it occurred to me that you never know when you are living inside the years you will someday miss desperately.

For most of my adult life, I understood that intellectually. But palliative care has a way of dragging ideas out of abstraction and placing them directly in front of your face.

One person loses two years to:

• chemotherapy,

• surgeries,

• complications,

• uncertainty,

• survival.

Another loses two years because they were too distracted to notice their children becoming adults.

And somehow both things can be true at the same time. That is what I struggle to make sense of sometimes in this work.

Not death, actually.

Death often makes a certain kind of medical sense. Biology eventually wins.

• Bodies fail.

• Disease progresses.

We understand this.

Time

What makes less sense is distribution.

• Who gets time.

• Who loses it.

• Who spends years in infusion chairs while someone else spends those same years at hockey games, on beaches, at concerts, or arguing about where to go for dinner.

  
  

Why one family measures time in scan intervals while another measures it in school semesters.

There is no framework that resolves that tension neatly. And honestly, maybe trying to resolve it is the mistake. Maybe the point is simply to notice it.

To recognize that life is unfolding simultaneously in radically different ways all around us. One parent sitting through another oncology appointment while another is helping a child choose freshman classes. One person praying for stable imaging while another accidentally rushes through moments they once prayed for.

I think about this often as my own kids get older. When they were little, everybody warned me: “It goes fast.”

What nobody tells you is that it does not feel fast while it is happening. It feels like logistics.

• Schedules.

• Practices.

• Tuition payments.

• Messy kitchens.

• Exhaustion.

• Late-night pickups.

• Group texts.

• Noise.

So much noise.

Until one day the house becomes quieter.

And you realize life was never contained inside the milestones. It was hidden inside ordinary moments you barely noticed while they were happening.

Patients teach me this constantly.

Not through inspirational speeches. Usually through grief. Through exhaustion. Through sentences spoken quietly and unintentionally that lodge themselves somewhere deep in your chest:

“I feel like cancer has taken most of my life the last two years.”

I think what makes that sentence so painful is that it is probably true.

Cancer does not only threaten life.

Sometimes it consumes the living of it.

Survival becomes a full-time job.

And that may be one of the hardest truths families discover too late: people are rarely asking only how long they will live.

They are asking whether they still get to have a life while they are alive.

That distinction matters.

Paying Attention

Maybe that is why this patient has stayed with me.

Because while they were losing years to illness, I was living years that I may someday recognize as the best years of my life, and like most people, I probably did not fully appreciate them while they were happening.

Not because I was ungrateful.

Just distracted.

Busy. Certain there would always be more time.

Maybe that is the real lesson here.

• Not forced gratitude.

• Not toxic positivity.

• Not “everything happens for a reason.”

  
  

Just attention.

• Pay attention when your kids are still under your roof.

• Pay attention to healthy mornings that feel ordinary.

• Pay attention to dinners together that seem forgettable.

• Pay attention to laughter drifting in from another room.

• Pay attention to the people whose lives have narrowed down to survival while yours still contains movement, possibility, choice, and time.

We spend years chasing milestones, thinking life begins when something extraordinary finally happens.

But the truth is softer than that.Life was already here:

in the coffee growing cold beside us,

in the laughter from another room,

in the drives we barely remember taking,

in the people we thought we had more time to love.

The tragedy of being human is not that moments end, it’s that we rarely notice their value until they become memories.

One day, the ordinary becomes unreachable.

• A house becomes an old address.

• A voice becomes a recording.

• A normal Tuesday becomes a lifetime ago.

And that’s when we realize that the small moments were never small at all.

They were the entire story.