The Little Organ I Never Thought About - Until I Had to Live Without it

For most of my life, I gave approximately zero thought to my pancreas.

Honestly, even after working in healthcare for two decades, I couldn't have given you a particularly impressive explanation of everything it did.

I knew where it was—more or less. I knew it had something to do with insulin and digestion.

And I knew one other rather ominous thing:

If you got cancer in your pancreas, you were a goner.

Or so I thought.

Then cancer showed up in mine.

And eight years later, after surgeries, chemotherapy, eventually losing my entire pancreas, and acquiring what amounts to an advanced degree from the University of Learning Things the Hard Way, I am still very much here.

And, rather delightfully, healthier and more active than many people my age.

So perhaps it's time we talked about the pancreas.

Pancreas 101: The Little Organ Doing an Enormous Job

The pancreas sits behind the stomach and essentially has two very different careers.

Its exocrine job is digestion. It produces enzymes that help our bodies break down carbohydrates, proteins, and fats so we can absorb nutrients from the food we eat.

Its endocrine job involves hormones, including insulin and glucagon, that help regulate the amount of glucose circulating in our blood.

Insulin acts somewhat like a key. It allows glucose in the bloodstream to enter cells, where it can be used for energy.

A healthy pancreas is astonishingly good at this. It senses what is happening and continuously makes tiny adjustments without its owner ever having to think about it.

Eat lunch? It responds.

Go for a walk? It responds.

Go to sleep? Still working.

Wake up? Working.

Get sick? Working.

Have a horribly stressful Tuesday? Yep. Still working.

Most of us never notice.

I certainly didn't.

"Diabetes" Doesn't Describe One Disease

This is something I wish more people understood.

When someone hears the word diabetes, I think the picture that often forms in their mind is Type 2 diabetes.

But Type 1 and Type 2 diabetes are distinctly different diseases that happen to share a major feature: problems regulating blood glucose.

Type 1 diabetes is an autoimmune disease.

The immune system mistakenly attacks and destroys the insulin-producing beta cells in the pancreas. Eventually, the body produces little or no insulin.

A person does not develop Type 1 diabetes because they ate too much sugar, didn't exercise enough, gained weight, or made poor lifestyle choices. Children develop it. Athletes develop it. Thin people develop it. Adults develop it.

Food and exercise absolutely matter in managing Type 1 diabetes—as they matter to everyone's health—but they didn't cause the disease.

Type 2 diabetes is different.

In Type 2, the body becomes resistant to insulin and/or eventually cannot produce enough insulin to meet its needs. Genetics, age, body composition, environment and lifestyle can all contribute, and even here I think we should be careful about casually assigning blame.

Human metabolism is far more complicated than "you ate badly and gave yourself diabetes."

Different diseases. Different biology. Same word.

And that understandably creates a lot of confusion.

Insulin Isn't Just a Medication

Perhaps this is the most important distinction.

For someone whose body produces essentially no insulin, insulin isn't merely a drug that improves diabetes. It is continuous life-sustaining replacement therapy.

We aren't adding something optional to make our numbers look prettier.

We are replacing a hormone the body is supposed to make continuously.

Without enough insulin, glucose cannot be used normally by the cells for energy. The body begins breaking down fat instead, producing ketones. If enough ketones accumulate, the blood becomes dangerously acidic—a medical emergency called diabetic ketoacidosis, or DKA.

This can progress quickly.

That is why people with absolute insulin deficiency cannot simply decide to stop taking insulin for a while, even if they aren't eating.

No food does not mean no insulin.

The body still needs basal insulin—the background insulin that a functioning pancreas would normally provide around the clock.

For me, an insulin pump is doing its best imitation of an organ I no longer have.

Every few minutes, my continuous glucose monitor communicates with my automated insulin-delivery system. An algorithm looks at where my glucose is, where it appears to be headed and how much insulin I already have working, and my pump adjusts the tiny amounts of insulin being delivered into my body.

It's extraordinary technology.

But it also means something that I don't think people without insulin-dependent diabetes necessarily realize:

There is no vacation from it.

And Then Life Gets Stressful

Here's where diabetes gets particularly interesting.

You can eat exactly what you normally eat.

Take your insulin exactly as you normally do.

Exercise exactly as you normally exercise.

And suddenly your glucose can behave as though nobody received the memo.

One culprit can simply be stress.

When we're under stress, the body releases hormones such as adrenaline and cortisol. This is part of our ancient survival system: if something dangerous is happening, the body wants readily available energy.

So the liver releases more glucose into the bloodstream.

In a person with a functioning pancreas, beta cells can respond by releasing additional insulin.

My pancreas, however, is not joining that meeting.

It isn't merely being lazy.

It is quite literally absent.

So my insulin pump and I have to deal with whatever glucose my liver has enthusiastically decided I might need for the saber-toothed tiger that is apparently chasing me through modern life.

That can mean higher glucose, greater insulin requirements and glucose patterns that suddenly become more difficult to predict.

And prolonged stress adds another layer. Cortisol can make tissues less sensitive to insulin, while disrupted sleep, altered routines and the mental load of diabetes itself can make an already complicated balancing act even harder.

That doesn't mean stress always sends everyone's glucose soaring. Human bodies are wonderfully individual, and stress responses vary.

But it does mean that sometimes a stubborn glucose number isn't evidence that someone "ate something bad" or managed their diabetes poorly.

Sometimes biology is simply being biology.

What Happens When You Don't Have a Pancreas at All?

This is the tiny club I never intended to join.

When my entire pancreas was surgically removed, I lost both of its major functions.

I no longer make pancreatic insulin, so I require insulin replacement around the clock.

I also no longer make the pancreatic digestive enzymes needed to properly digest and absorb food, so I take pancreatic enzyme replacement with meals and snacks.

In medical terminology, diabetes caused by pancreatic disease or removal of the pancreas is generally classified as pancreatogenic, or Type 3c, diabetes rather than autoimmune Type 1 diabetes.

It's an important technical distinction.

But when it comes to insulin dependence, people like me have something profound in common with people living with Type 1:

Our bodies cannot provide the insulin necessary to sustain life.

I don't say that dramatically.

I say it because understanding that single fact changes the way we understand insulin-dependent diabetes.

The Mental Load Nobody Sees

There is another piece of this that deserves mentioning.

Diabetes management doesn't happen twice a day when someone takes a pill.

It's happening while you're working.

Driving.

Sleeping.

Traveling.

Eating dinner.

Exercising.

Sitting on the beach.

Having an argument.

Celebrating something wonderful.

Dealing with something heartbreaking.

There are glucose trends, insulin-on-board calculations, carbohydrates, exercise effects, infusion sites, CGM sensors, pump changes, backup insulin, supplies, alarms and the occasional inexplicable arrow headed somewhere you most certainly did not invite it to go.

Modern technology has made this dramatically easier and safer. I am enormously grateful for it.

But technology hasn't eliminated the mental load.

And perhaps that's one reason understanding matters.

Not sympathy.

Not treating someone with diabetes as fragile.

Just understanding.

Eight Years Later

There is something wonderfully ironic about the fact that the organ I barely understood became the organ that taught me so much about my own body.

Cancer forced me to learn what my pancreas did.

Losing it taught me just how remarkable it was.

And living without it has given me enormous respect for both the human body and the technology that can step in when part of that body no longer can.

Eight years ago, I thought cancer in your pancreas meant you were a goner.

Turns out I had a few things to learn about that, too.

I survived distal cholangiocarcinoma that invaded my pancreas and spread to several surrounding lymph nodes. I survived a Whipple surgery, chemotherapy, additional surgeries and, eventually, a total pancreatectomy.

And eight years after cancer first entered my life, I’m still here.

I'm traveling. I'm walking. I'm working. I'm cooking. I'm planning adventures. I'm chasing a very energetic little granddaughter around whenever I get the chance.

And somewhere on my arm, a sensor and an insulin pump are quietly having a conversation every few minutes about how much insulin I need to keep doing all of those things.

Pretty remarkable, really.

🍯 Honey Note

Sometimes understanding what another person carries doesn't require us to fix it—or even fully comprehend it.

It simply asks us to become curious before we make assumptions.

The person with diabetes isn't necessarily sick because of something they ate. The person whose glucose is high isn't necessarily doing something wrong. And the person wearing medical technology on their body may not feel ill at all.

Sometimes those little devices are simply replacing something their body can no longer do for itself.

Mine happen to be replacing part of an organ I once barely thought about.

Funny how life teaches us what matters.

And perhaps one of the loveliest things we can do with what we've learned is pass a little of that understanding along.

With a grateful heart, a borrowed pancreas-worth of technology, and a little bee buzzing beside me,

Honey 🐝🥰

Still here. Still curious. Still learning. And still finding plenty of reasons to enjoy the joy.