So you wanna be a Glossy..

Okay, so fine, none of us want to be Glossectomees or Laryngectomees, but we do want to live, so here we are!

I preface these tips by saying, every person's experience is unique with unique obstacles, so i cannot presume to know what you will go through. I can only offer my experience as a survivor and what i have gathered from other survivors along the way.

I AM NOT A MEDICAL PROFESSIONAL.

ALWAYS consult your OWN medical PROFESSIONALS!

at the get go....

ONE DAY AT A TIME.

Learning you have cancer. Finding out you may lose all or part of your tongue and/or larynx. Going through treatment.
Let’s be clear: this is traumatic.

What helped me was focusing on one day at a time. Especially after surgery, my only job was that day. Not next month. Not “what if.” Just today—and the tiny wins, like walking one extra lap around the hospital floor. Looking too far down the road can get overwhelming fast.

Zoom in. Today is plenty.

AN ADVOCATE.

If someone offers to come with you to appointments—say yes. Take them up on it.
In “normal life,” you may be great at making decisions and remembering details, you run a Fortune 500 company, you have 4 kids and multitask in your sleep! I get it, but once you become a "patient", everything changes. New terms, new information, big emotions—and yes, some shock. Having someone with you at every appointment is incredibly helpful. Emotional support is great, but what you really want is someone who can take notes.
Think of them as your advocate… or your personal secretary 😉.

THE NOTEBOOK.

Get one. Bring it to every appointment. Use it for questions, notes, symptoms, sleep patterns, meds—everything. (Or hopefully your secretary/advocate will handle it.) Yes, i know you ran that Fortune 500 company, but, trust me: you will not remember it later.

Having one place for all of this becomes an invaluable resource and a sanity-saver.

LISTEN TO YOUR BODY.

In real life, I was not good at this. At all.
Tired? Push through. Ache? Ignore it. Even my first time in the ICU—intubated—I was trying to answer work emails. 🙄
Recovery forced me to slow down and actually listen. And when my body said, “Hey, I need rest,” I finally answered, “Okay.”

I promise you this: the world will keep turning. People will figure out how to do the things you used to do.
Right now, your priority is YOU.
And YOUR BODY.

before you start treatment....

GET A SECOND OPINION.

Look—do what works for you. Truly.
But when someone told me they wanted to cut out my tongue to save my life? Yeah… I got a second, third, and fourth opinion.

Part of it was wanting to know if there were other options. But just as important? We were interviewing a team. I know they call us patients, but let’s be real—we are clients. This is your body, your life, and you deserve to feel confident in the people making these calls.

If you can, get an opinion from the best doctor you can find in the country for your specific cancer, surgery, or treatment. Even if traveling isn’t possible, many top specialists will do a consulting second opinion. That outside perspective can be incredibly valuable.

Sometimes it shows you new approaches. Sometimes it simply reinforces that your original team is the right one. Either way, knowledge is power—and peace of mind is priceless.

Bottom line: ask the questions. Get the opinions. Trust your gut.
You’re allowed to be thorough when the stakes are this high

VOICE BANK. NOW.

Maybe you’re “just” having a partial glossectomy. Or “just” a laryngectomy. Or “just” radiation—for now.
And I’m here to tell you: it is not hard to bank your voice. It’s an insurance policy.

Sorry for yelling. But also… not sorry.

When I recorded my voice—on multiple platforms—the tech to truly use a cloned version wasn’t even available yet. And that was only a couple of years ago. I can’t tell you exactly what technology is coming next. And I can’t predict whether your voice will stay the same, change, or fade over time.

What I can tell you is this: if you have the recordings, you’re prepared—no matter what happens.

I feel very confident about one thing: technology is only going to expand our options for communication in the future. Having your voice banked means future-you has choices. And choices matter.

I also have an educational resource website—non-profit, zero money-making, promise—devoted entirely to voice banking, voice cloning, and virtual voicing. It’s as good a place as any to start.

Do it now. Your future self will thank you.

FOOD YOU LOVE.

A partial glossectomy, a laryngectomy, and radiation can all change how you eat—and how things taste—sometimes temporarily, sometimes permanently. If you’re joining the 100% glossectomy club, you won’t taste again. Even if you do retain some taste, it won’t be the same. Solid food will also off the table.

So yes—this is your official permission slip (but talk to your doctor too!) to make a food bucket list and enjoy the heck out of it. Derive real, unapologetic pleasure from the foods you love while you can.

Post-surgery, I personally advocate for moving toward a healthy, whole-food, plant-based diet. I’m not a nutritionist or a scientist, but there’s a lot of solid, evidence-based research showing that nutrition plays a role in overall health—including your body’s ability to recover and fight cancer. Do your body a favor and give it the support it needs.
(And yes, I have a Nutrition page if you want to hear me rant about this some more.)

BUT FOR NOW? Live it up. Eat the cake. Savor the pasta. Say yes to the fries.
This moment deserves joy too.

A NOTE ABOUT TEP (TRANS-ESOPHAGEAL PUNCTURE).
I strongly encourage you to have a thoughtful discussion with both your surgeon and your speech-language pathologist (SLP) about whether a TEP is right for you at the time of your laryngectomy. In many cases, surgeons perform it by default and may present it as a given rather than a choice. It is a choice, and it deserves careful consideration.

A TEP is a small puncture created between the trachea (windpipe) and the esophagus (food pipe), with a plastic valve placed inside. For many laryngectomees, it can be a very effective and convenient way to speak. However, it is not without risk. The valve requires ongoing maintenance and regular replacement, and complications do occur.

I personally know laryngectomees who regret having had a TEP placed because of complications that ultimately left them unable to use it. In some cases, the puncture does not close if the valve is removed, which can allow food and liquids to enter the trachea. This is not a minor inconvenience—it is often a serious ongoing issue.

It’s also important to know that if you do not have a TEP placed during your initial laryngectomy, you can usually have one placed later (insurance considerations aside, which should also be discussed). Additionally, there are other established ways for laryngectomees to communicate, including an electrolarynx and esophageal speech. (if your SLP is not knowledgeable about these options, you have the wrong SLP, just sayin.) At minimum, this warrants a careful conversation.

For those facing both a 100% glossectomy and laryngectomy, it’s especially important to understand that a TEP does not guarantee functional speech, at all. While the larynx generates the sound source for speech, the tongue plays a critical role in shaping that sound to make actual speech. Without a tongue, intelligible speech using a TEP is extremely unlikely. I know of only one individual who has achieved this, and it required favorable anatomy, specialized prosthodontic work, and years of intense effort. That case is a rare exception.

Ultimately, the decision about a TEP should be made deliberately, with full information, and in collaboration with your care team. The right choice is the one that aligns with your body, your goals, and your comfort with risk

for the hospital....

AN ADVOCATE.

Yes. This again.

A laryngectomy or glossectomy is major surgery. You will be in pain. You will be on pain meds. Can you do it alone? Sure.
Should you do it alone if you don’t have to? Absolutely not.

Let me give you a real-life example. My daughters were with me all day. One night, though, I needed the nurse. I was in an excellent hospital—one that does surgeries like this all the time. I pressed the call button.

Nurse: “Yes, can I help you?”
Me: …silence…
Nurse: “Hello? Do you need something?”

Sir. MA’AM. Are you kidding me?

This happened more than once.

When you can’t speak, or are drugged, exhausted, or in pain, things that should be simple suddenly aren’t. That’s where your advocate comes in. Someone who can speak up when you can’t. Someone who notices when something isn’t right. Someone who can discuss status when the docs come by on rounds.

This isn’t about weakness. It’s about logistics.
Have an advocate. You deserve backup. (If you don't have anyone, discuss this with your team, there are volunteer patient advocates in some places!)

PACK IT.

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