Nov 08 2018

My Continuing Battle with Tongue Cancer – Part I

Published by at 3:00 am under Uncategorized

My Continuing Battle with Tongue Cancer
or
Spring Songs into Autumn Sonatas
For Lynne

Part I of III

Frederick A. Lubich

Preface

Part I of the following text was originally written towards the end of September 2018 as a response to my friends’ good wishes and further inquiries after my recent tongue cancer surgery. Since my response also contained additional medical and statistical information on oral cancer, including its early symptoms and warning signs, several readers suggested that I make the text available to a larger audience. And so it is reproduced here as part I in a slightly expanded version.

As I was writing my rather grim update and similarly gloomy outlook about life and death, my current misery started to trigger more and more memories of much better times long gone by.

They took me all the way back to Sète, a port and seaside resort on the Mediterranean in Southern France, were I spent some time with friends in the summer of 1971. Sitting on the rocks looking over the blue water, sparkling in the southern sun and watching the rolling waves breaking onto the beach, I started to imagine writing a love story associated with the sea. But I dismissed it immediately as a quixotic phantasy, since I thought such stories must have been already written in countless variations since the time of antiquity.

“One day, love will find you” … Although this is a line by the rock band Journey which would not become an international hit until several years later, my inner voice might have already mumbled it quietly, long before it came rocking and rolling my way from a country far away. At least clairvoyants could see it that way and explain it like some kind of flash forward into the darkness of my future. Anyway, I never forgot that day overlooking the Mediterranean Sea, day-dreaming of my future destiny.

And now, almost half a century later into my life’s journey and after my latest encounter with mortality, I have decided that it is time to write this love story and write it exactly as it was happening to me over the past years and decades, especially since it had become a central part of my own biography. And so I added this story as part II and III to this narrative, interweaving it also time and again with part I. I also added some additional imagery related to its itinerary.

As usual, my mind kept wandering, getting carried away further and further, but hopefully, this sentimental journey of the second and third part can also serve as a counter vision to the first part. Or to put it in Freudian terms, the pleasure principle is by nature always more enjoyable than the death principle. In short, remembering the misery of death will always remind us to celebrate the miracle of life, and above all its quintessence, the magic and mystery of love. Love is life galore, love conquers everything, or as the ancient Romans put it so succinctly: omnia vincit amor!

I: Tongue-Tied and Speechless But Still Alive

September

Dear Friends on both sides of the Atlantic,

I would like to thank all of you who wrote or called during the past weeks after my operation, sending me your prayers and good wishes, offering to help and even bake me some special German cake. Since some of you also had specific questions regarding how I am doing and how we are coping, I decided to answer all of you in somewhat more detail.

It was in May 2018, when I felt the growing pain in my tongue might be more than just another sore from a recent bit into my tongue. However, for two more months, a nurse assured me that it was only an ulcer and a mouth rinse with saltwater and baking soda would take care of it. It wasn’t until July 2018, that a biopsy confirmed that that this was much more than just an ulcer. My operation was scheduled for August 21.

Clearly, my cancer turned out to be a determined head hunter. Apart from some minor skin cancer operations on my chest, all of my six more or less major operations since 2005 were in the area of neck, nose and tongue. One operation cut out tissue affected by follicular lymphoma, another drilled a dime size hole into my nose to eliminate a carcinoma, and of the four tongue surgeries the most recent one was also by far the biggest one, since my inner enemy had quite suddenly returned with an unprecedented ferocity.

In an operation lasting eight hours, the doctors ended up cutting out more than half of my tongue, which was then reconstructed with tissue taken from my leg, leaving a scar from the hip all the way down to the knee. In addition to providing me with a new patch-work tongue, the rest of my lymph nodes around the neck had to be removed too. So my necklace of stitches also looks with a bit of imagination like the traces of a patched-up decapitation. Thus, this covered-up beheading turns out to be quite symbolic, as the survival rate for tongue cancer is only 50-60 %. Statistically speaking, I could have lost my head – along with the rest of my body – quite a long time ago. But how many more times will I be able to beat the odds before I run out of luck?

Lucky me! This time around I had escaped the final cu of the knife, waking up from my surgery tongue-tied and speechless – but still alive.

While my tongue and neck remained swollen from several weeks, the rest of my body has shrunk substantially, as I have lost twenty-five pounds in this last battle round. As far as regular breathing is concerned, I get most of my air through a trach going right into my trachea, and all my so-called food I get exclusively through a gastric tube. The latter could remain in place for several more weeks or months or – if the streak of my bad luck continues – for the rest of my life.

And forget talking: More than four weeks after surgery, my speech is still mostly babble bubble, sounding somewhat like Donald Duck backwards, only much slower. And every now and then, my gibberish is interrupted by a growling sound as if coming from the underground, vaguely reminiscent of the howling of Jim Morrison from the Doors, one of the great musical idols of my youth. In short, calling my linguistic challenges a speech impediment would be quite a compliment. I speak mostly in tongues nobody understands. And while others are straining to read my lips, I am trying to catch my breath, since simply finishing one or two more or less incomprehensible sentences can still be quite an exasperating experience.

Because I often cannot say the simplest words, I have to write them down either on an erasable notebook or on sheets of paper I have been stacking up in ever growing piles over the last couple of years at home and in my office. They are all recycled photocopies of discarded academic articles, former administrative correspondences etc., which keep reminding me one more time of former research activities, other forms of bureaucratic absurdities etc., but those empty back pages always make perfect scratch paper.

As if I saw it coming, this growing tumor appeared to be designed by my destiny’s morbid sense of humor. As I look at all those paper towers, I am reminded of a vivid phantasy from a long time ago, when I was growing up in West Germany. I must have been eleven or twelve years old, when I imagined that I had been given a certain amount of words in my life and after I had used them all up I would have to remain silent forever.

Maybe the song “Silence is Golden” by the Four Seasons also had an influence on my strange flight of fancy – which in reality seems to have landed me half a century later on the other side of the Atlantic in this current tongue-tied mess. I remember hearing “Silence is Golden” in my youth on radio AFN, the American Forces Network, which at that time was entertaining the American troops stationed in Europe with popular music from way back home.

Be that as it may, little did I know at that time, that I would not only end up talking like those American troopers, but also babbling like those Babylonian builders in the fable of that infamous Tower of Babel. And if one wants to add an additional riff to my biblical narrative, one could make the case, that now with my half native and half artificial tongue, I can even up the ante to their Babylonian brinkmanship and garble my German and English all the better into perfect bilingual gibberish.

In other words, forget talking a mile a minute, forget the Eagles’ driving rock song “Life in the Fast Lane”, forget Bob Dylan’s rocking sing-along “Forever Young” or to bring it even closer to home, forget all that late romantic rush of German “Sturm und Drang”.  Instead, keep in mind the coming of death, the final, inescapable exit door, which the Doors had called that ultimate moment, when we no longer can run and hide, because the time has come to “break on through to the other side”. Academic scholars with ambitious publication agendas have always lived with so-called deadlines, but this deadline has no definite date on which both sides, author and publisher can agree upon – this deadline will hit you sooner or later, no matter if your work is done.

As far as my near future is concerned, I will need dental surgery, speech therapy, extensive radiation and maybe additional chemotherapy, to be topped off by treats like having to pay hefty bills, since our insurance company does not cover all the costs of that extensive surgery. And all of that does not guarantee at all, that I will ever be able to eat and talk again half way normally, let alone teach a foreign language with the necessary clarity. Not to mention the penultimate question: Will my inner enemy come back? After all, a successful operation is by no means a guarantee, that the tongue cancer will not return for a final and fatal blow. That happened to someone in our closer circle of acquaintances not so long ago.

Pondering all my woes along with their future scenarios, I feel strongly, I really needed all that oral cancer like a “hole in the head”, as the Jewish American saying goes. And speaking of not being able to speak: After my first major tongue operation in 2005, I regained my speech about one week after my operation. However, for some reason, in my first telephone conversation with my mother in Germany, I sounded much more Yiddish than German. All I had to add was playing a Klezmer lidl on my old high school fiddle, in order to further underscore the riddle of my new pronunciation and linguistic transformation. In my younger years, I had played the violin with youthful determination, although my modest musical talents always kept me well-grounded through all those years. But now, speaking to my mother, her far-away “Buuf”, as she used to call me in my youth, sounded in deed like a fiddler high up on his roof.

Speaking of Yiddish: Years after my first tongue operation, I started to have longer and longer conversations with my good friend and best Yiddish speaking buddy, Rabbi Michael Panitz, and in the course of our rambling discussions we found out that the Yiddish dialect of his Eastern European grandparents shared many similarities with the German Moravian dialect of my own parents and grandparents, who after World War II were expelled from their ancestral home in the Bohemian hinterland of former Czechoslovakia.

In the beginning of this year, having coffee again with Michael at Borjo’s, our favorite local coffee house in the University Village of Old Dominion University, he told me another one of his funny Yiddish proverbs. This time it was about having a “been in hals”. It literally means to have a leg in one’s throat and figuratively speaking it suggests having a thorn in one’s side. This Yiddish kaffeeklatsch took place half a year before I was diagnosed with the latest thorn in my throat. In other words, Michael’s proverb turned out to be quite a telling self-fulfilling prophecy, since now I am trying to talk quite literally with bits and pieces of my leg and my tongue. And while at times this can sound quite funny – for me in the long run it is no fun.

What’s in a word? Given my story, one could add a final irony to my case history. In medical lingo, tongue surgery is called glossectomy after the Greek word “glossa” for tongue and language. Mulling over my calamity, my position as managing editor of “Glossen”, a bi-lingual online journal on transatlantic, German-American cultural relations and political developments after 1945, could also be in imminent jeopardy. Maybe the name glossectomy is doubling as an ominous writing on the wall, spelling out my pending editorial fall? Or maybe, the linguistic coincidence is only meant to be tongue in cheek? Fate’s tickling of my funny bone so to speak?

***

Considering my new condition, with all its known and unknown challenges, Lynne turned out to be once again my greatest fortune in my current misfortune, as she became an inexhaustible source of practical help and emotional support. And on top of it with her, I was also in the good hands of a practicing psychotherapist with a lot of experience in mental health who could share all her professional wealth. But for the time being, forget the Freudian “talking cure”. In the first days after my operation, whenever darkness threatened to come over me, she simply was my daily sunshine, my sunny California girl of our youthful years from way back when. Leonard Cohen described such magic moments of natural healing most evocatively in his haunting “Anthem” from his album The Future: “There is a crack, a crack in everything, that’s how the light gets in.”

In conclusion, I would like to also shine a light on the reality of tongue cancer and have my story serve as a lasting lesson for all of you, including all your friends and all your enemies – should you have some. In my younger years, I smoked like a chimney, often rolling my own cigarettes with Dutch Drum tobacco and of course always without filters. And I was doing it for fifteen years. Whereas lung cancer is quite common as a result of smoking, tongue cancer in comparison is quite rare. Oral cancer accounts for only 3% of all forms of cancers and the percentage for tongue cancer is even lower. And it can have all different types of causes besides smoking.

All the more reason to be aware of the fact, that a persisting pain in the tongue can be so much more than just a lingering canker sore. Early detection and timely intervention are absolutely essential in preventing further if not fatal damage.  After all, who wants to leave before one’s time, especially if you feel you are still in your latter-day prime? Not to mention Bob Dylan’s paean to youth and its endearing belief in its eternal truth.

“Den Fluch in Segen verwandeln”, to turn the curse into a blessing, that is one of my favorite words of wisdom from the German-Jewish-Argentinian writer Robert Schopflocher, whom I met in Buenos Aires at the beginning of this century. Our brief encounter led to a growing friendship via electronic correspondence that lasted for fifteen years until his death.  Inspired by his guiding principle, which for me has turned out to be true on several occasions during the past several years, I am also trying to come to terms with the curse of my cancer.

In other words, I have become quite grateful to my deadly enemy that he has granted me since the time of his first appearance so many more years to live and enjoy life to the fullest. And I hope, I will be able to cherish all those things again, which we usually take so much for granted, and I am sure, I will do it even more consciously. Simple things like being able to eat and speak … enjoy good food and good conversations … the exchange of silly jokes, the sharing of sudden ideas … the joyful interplay of good company and lasting friendships …

Again, my text turned out to be much longer than intended. But since I can’t talk I have to write. So let me write, turning the curse that has been cast upon me into a blessing: May you all be blessed with good health! “Bleibt gesund”, each and every one of you here and on the other side of the Atlantic. And last but not least, I wish you “a gezunt af dein kop”, as the Yiddish greeting goes, which in English means health to your head!

But I would like to expand its blessing for a healthy head, including its mental health, for all of you by wishing you “Gesundheit” for the rest of your body too! Or as the ancient philosophers of Lynne’s Italian ancestors put it so much more eloquently: “mens sana in corpore sano”!

With this in mind, we both wish you all the best,

Lynne and Frederick

Part II – October

No responses yet




Trackback URI | Comments RSS

Leave a Reply