Losing my tongue, finding my voice

This was me 5 years ago today, Feb 7, 2017—the day that my life was saved.

I’m stepping (extremely) far out of my comfort zone to share a very personal part of my life that has impacted every aspect of who I am, professionally and otherwise:

Five years ago today, I had two-thirds of my tongue removed and replaced with a 6in/15cm swath of skin, fatty tissue, and blood vessels that was transplanted from my upper left arm into my mouth.* This was in tandem with a modified radical neck dissection and a tracheostomy that had me on the operating table for some 12+ hours.

[*I joked with my dad, a huge baseball fan, that while some people were southpaws, I had become a “southjaw.”]

This was all so that I might be cured of a “spontaneous” stage 3 oral cancer (specifically T3N0M0 SCC HPV- for those interested in the details) that was discovered in late 2016 and officially diagnosed in Jan 2017.?

To learn that, even if necessary in order to treat your cancer, any part of your tongue is going to be removed is, I admit, pretty horrifying if not, well, frankly, devastating.?

And for me, since much of my work as an educator and communicator is to present and share orally in front of others, the prospect of not being able to speak again intelligibly (much less to eat or taste normally) was, as a good friend and colleague said, tantamount to “a ballerina losing one of their legs.”

What makes a dancer a dancer?

Losing a leg, a tutu, and the pointy toe shoes, I’d say, since, after 3 surgeries, 8 days in the ICU, 21 total days of hospitalization, and 2 stomach feeding tubes (PEGs)—swiftly followed by 6 straight weeks of daily radiation treatment, it meant re-learning how to talk, how to generate enough saliva to be able to keep talking (whether intelligibly or not), and how to eat and swallow again without choking.*?

[*A handy tip should you ever find yourself in similar circumstances: Neither long noodles (à la spaghetti or udon) nor small particles (think rice or lentils) are your friends when you don’t have control of the mechanics of your mouth. Instead, always, and I do mean always, opt for the smoothie…]

Indeed, It turns out that your tongue does A LOT. In fact, you might want to take a minute now to acknowledge this underappreciated yet very—trust me on this—important organ. You don’t realize how happy you are that you have it.?

But the show must go on and I was determined that I’d be back on stage, one step —well, one word— at a time.?

Images left to right: Just before treatment; Immediately post-op (my husband actually asked my doctors if there was a possibility that my head might explode...); Together with some of my outstanding medical team; With my niece (who overcame a much more serious cancer than mine) and 91-year-old mother in law in Holland in Dec 2021.

FONBAPO (The fear of never being able to pirouette again)

Yet, I admit that I was afraid. Very afraid.?

Not so much of dying. Initially, yes, of course, this was a real concern. But being based in NYC and with the privilege of having an excellent private employer-provided health insurance plan,** I had access to a world-class medical team who assured me that the situation was very serious but curable.?

Rather, my fear was of returning to the workplace and speaking in public or even simply with colleagues. To not be able to do what you do best and the prospect of never being able to do it again at that level is at once frightening and embarrassing and humbling. It is indeed like a dancer no longer being able to control their movements or even having the body parts to direct.

Would the new me be accepted by my peers? Could they even understand me? Were my talents now lesser? Was I now lesser? I had a genuine crisis of confidence.?

Images left to right: Spouse's artistically rendered portrait featuring my trach; My bedside mantra; Bad-ass nurses rule!; My taped face fit right into the permanent Sol LeWit collection at MassMoCA

The ballerina strikes back

To overcome this, in addition to pursuing all of the conventional state-of-the-art medical treatments available to me, I was proactive and put up an extensive counterattack, trying to tackle every physiological, emotional, strategic, and practical angle of the situation:?

I (and my fabulous husband) sent out regular, preemptive email missives with status updates to those in my circle.

I took speech and elocution lessons, plus extra 1-on-1 dictation tutoring.?

I did (and still do) 3x day swallowing and tongue-workout (yes, it's a thing) exercises.?

I practiced reading aloud and under my breath every morning walking to the subway station, noon, and night (it was the last thing I did in bed before turning out the light).?

I spoke to others who had survived the same illness.?

I spoke to those about to undergo the same treatment to let them know they could get through it.

I followed head & neck cancer boards and blogs.

I went to therapy.?

I took antidepressants.?

I found an acupuncturist.?

I medicated (yes, with prescribed opioids; when not abused, they provide real relief to those in need).

I meditated (which anyone who knows me knows is not something I’m naturally inclined to do).?

I exercised by walking the streets of Ditmas Park and Midwood, Brooklyn backward, forward, and in between.

I wore kinetic tape across my face and looked like a modern-day mummy riding the subways of NYC.?

I learned how to give myself lymphatic massages.?

I followed physical therapy routines.

I manually adjusted my “neo-tongue.”?

I consumed special liquidized, high-nutrient meals.?

I ate manuka honey.?

I hydrated.

I wore a specialized air compression machine.*?

I journaled.?

I slept.?

I binge-watched the Great British Bake Off so as to live vicariously through those who could eat.

I had visitors and caregivers.

I temporarily deleted my work email from my phone and my laptop.

I laughed and worked to make others laugh.

I cried (although selectively) and, occasionally, contemplated that the world might be better off without me in it.?

I forced myself to go out and speak up, not hiding behind the much easier and very tempting option of simply staying silent.?

Most of all, I tried not to let my many fears show, instead faking it (or at least attempting to) until, eventually, I made it.

[*The compression contraption had the effect of making me look like, depending on your point of view, a long-lost Power Ranger or an enormous space-cadet-cum-chipmunk.]?

Images left to right: During treatment, my radiation mask and I developed a special bond; Thumbs up for zapping time; We were flooded with well-wishes in the form of postcards and more from around the world with which we lined our bedroom walls for inspiration; "Chipmunk" me.

New leg, new tutu, new shoes, new me

And, while not in days or weeks or even months but over the course of years, slowly and surely with hiccups and detours that I won’t go into here, I did make it.?

I made it with tremendous, unwavering support from my spouse and partner (with whom I am more in love than ever before), my incredible healthcare team (to whom I am forever indebted), my dear friends and family, and you, my colleagues and greater network.?

I now speak normally—or close enough to it—and look and function much as I did pre-cancer. More importantly, I’ve not only regained my sense of confidence in who I am professionally, but I’ve also re-examined my values and I now know how and with whom I want to spend the rest of my days—as many as I’m given, that is.?

Finally, this experience—of sounding, looking, and being* “other” than the norm—has given me a new appreciation of differences and being different. Having been a 6 ft/1.82 m tall redhead all my adult life, I’m used to having, shall we say, a striking presence, but this was a different type of standing out. It was one in which I was incredibly vulnerable.

Having been a 6 ft/1.82 m tall redhead all my adult life, I’m used to having, shall we say, a striking presence, but this was a different type of standing out.

[*In addition to the facial scarring plus radiation-induced sunburn, edema (swelling), premature wrinkling, and excess skin folds on my neck, I lost part of my hair (which, thankfully, has since regrown) and around 35 lbs/15 kgs (which, alas, has not come back and, in my case, means I remain underweight; yes, despite the adage to the contrary, there is such a thing as being "too thin").]

Leadership lessons

This experience has profoundly changed me. I am committed to using the insights I have gained from it with the hope that they’ll help me better do my work and be a kinder, more appreciative person along the way. ?

Today, I look and sound much like my pre-cancer self. I no longer fear taking the stage —well, other than the usual stagefright that many of us have. But I do live and work differently. I am different from and thanks to this experience. I think, I hope that I am a better, more vulnerable but also much more resilient leader for it.

It is apparently quite common for cancer patients who survive their illness to be grateful for the experience. I am no exception. I hope with every fiber of my body to never have to face this challenge again, but I also am thankful that I had (and overcame) cancer.

In losing my tongue, I gained new parts of myself and found my voice.

And those who have a voice owe it to those who don’t have one to use that gift. For me, this means advocating relentlessly for developing across differences.?

I will continue to speak for those who are not being heard.

Images left to right: Back at it again post-treatment, this time leading a roundtable discussion with education authorities from Italy, Kenya, the UK; On stage in Montreal; Addressing 1000+ CISVers in the Netherlands; and with the Rev. Brenton Peters, one of the wonderful extended medical support team whom I have the honor of knowing (yes, that's husband Henk in the background).

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**EPILOGUE**

Words are insufficient to express how grateful I am for the excellent medical treatment I was fortunate to receive and those who provided it (Brian Schmidt, Mark Delacure, Ken Hu, Cathy Concert, and so many others). However, that one’s physical well-being is tied to whom one happens to have as an employer (thankfully, I had an excellent one in that regard at the time) should be criminal.?

By my reckoning, the medical charges I wracked up in the first year of diagnosis and treatment alone were well over US$1 million. Of this amount, after the insurer’s negotiated rate was applied, I ended up “only” paying around US$10k out of pocket. Thankfully, we had the means to do this. So many do not.

This experience has made me terrified, first-hand, of the dependency that I and many of those who are reading this in the US and elsewhere have on employers for access to care that can determine, in an actual life-or-death way, our fate.?

If and when you have the opportunity to do so, please support access to universal healthcare as a basic human right in the US, or wherever you are.