In the last 10 years, I have had four head and neck surgeries for malignant tumors, two courses of head and neck radiation, and one lung surgery to remove two nodules which turned out to be benign. I had two face and neck reconstruction surgeries, too, and 30 hyperbaric oxygen treatments for a broken jaw due to osteoradionecrosis. But it is the details of the first surgery that stick in my mind.
In my Philadelphia hospital, they allowed me to walk with my wife Susan from the prep area to the elevator for the ride up to pre-op. The nurse escorted us. I pulled along the wheeled stand that had my IV bag swinging to the rhythms of our steps. I held Susan’s hand and assured her that everything would be ok. She was allowed to come with me into the elevator. When we arrived at the O.R. floor, though, she had to stay put. I kissed her and walked out of the elevator and turned right toward the doors to pre-op, pushing the IV pole along. I heard the elevator doors close behind me and, for the first time, I was filled with fear. I felt scared and alone. I choked up. But I pulled myself together by thinking, “It’s O.K. It’s time. This is right. Do this.” The nurse opened the doors to pre-op and I walked in. I climbed onto a gurney and became another sheeted figure in a room full of sheeted figures, each with an IV tree standing nearby like a stainless-steel sentinel. I awaited my turn…
That was in November, 2002. About three years before this event, my internist, whom I saw annually for a physical, was so concerned about my lively drinking and smoking lifestyle (even though I had quit both in 1995) that he recommended an otorhinolaryngologist for me to see twice a year. He knew I had the classic profile for head and neck cancer. And so began my long relationship with the head and neck surgeon who saved my life numerous times.
In January 2002, one of my adult sons died unexpectedly. It broke my heart and my Susan’s too. It changed things forever. My internist told me that carrying a heavy burden of grief can sometimes stress the human system in difficult ways and he encouraged me to be especially vigilant for anything going wrong in the coming months.
In the spring, around the time of my 61st birthday, I found two swollen lymph nodes in my left neck. My surgeon needle biopsied both and found that the swelling was caused by infection. He prescribed a course of powerful antibiotics and the swelling subsided. But that summer, I never really felt well. It was as if I had a low grade fever. My energy was sagging. In October, the two nodules swelled up again and open biopsy was recommended.
The November 2002 surgery was fairly straight forward. The surgeon removed the nodules, and while I was still open, they found that the infections in both of them were encased in malignant cells. The needle biopsy had pierced through the shells and extracted only infected material – missing the malignant cells in the casing around the nodules. With this information in hand, he continued the surgery by removing a dozen nearby lymph nodes to make sure the area was clear of cancer. Then he sewed me up: a neat, now barely visible, six inch scar on the left side of my neck. The diagnosis was squamous cell cancer of unknown origin.
Thirty radiation treatments were recommended and I completed them on January 31, 2003. I was asked if I wanted to have a feeding tube inserted because the inside of my mouth would be burned and irritated by the radiation. I said no, and for weeks I ate nothing but a liquid product called Resource 2.0, which provides perfect medical nutrition. I lost my sense of taste, and for a few months I ate no solid food other than ice cream and scrambled eggs and smoothies. It hurt to swallow anything and everything. Many of you readers know the drill. It was, I am told, a very heavy dose of radiation. The fatigue I experienced for months after the treatment was unlike anything I had known before.
That spring of 2003 my energy was limited, but I had an idea for a good project. My wife and I bought a deteriorating 30 year old 19’ sailboat which needed work. We named her Moonshadow. And while I lacked the wellness to be on my feet working for hours, I found that I could work quite well on my hands and knees: sanding, painting and varnishing. I had never done anything like this before. It’s amazing what you can learn by reading the directions on cans of paint and varnish. It gave me a real sense of purpose and accomplishment and made me feel alive. How I loved Moonshadow. She was beautiful when she was finished and I sailed her every minute I could that summer.
The burns in the lining of my mouth and my esophagus healed in about six to eight months. It is odd how that happens. The eating disabilities diminished so slowly that I often did not recognize how much progress I was making. One day late in the summer I realized I was pretty close to normal again. My energy was much better and I knew that some working out would get me back to where I had been. It was still hard to tolerate hotly spiced food, but otherwise I knew that I had recovered well. My sense of taste was back. I could swallow solid food with only occasional difficulty by lubricating it with water. Meat was always difficult though, so I gave it up. I was already used to carrying a water bottle with me to help with the dry mouth and I was eating a fairly healthy diet.
I was cancer free for what seemed a long time except that I had many early stage skin cancers removed. It reminded me that all of those wonderful shirtless, shoeless summers I spent along the Toms River in New Jersey when I was a boy may not have been quite as healthy as my mom thought. But I did learn to sail a little 8’ boat and that led me to Moonshadow later on. What a great gift from those summers.
Three years after that first surgery, I was diagnosed with a squamous cell tumor on the right side near the parotid gland. Surgery was scheduled for December 23, 2005. This surgery included a partial parotidectomy. The diagnosis was the same: squamous cell cancer of undetermined origin. No further therapy was recommended and recovery was less arduous. But I had a greater saliva deficit because my parotid was partially gone. I knew what to do about that. Never forget to bring the water bottle.
Sometime just prior to this second surgery, I decided to estimate what percentage of each day I must give to the business of being a cancer patient. On the first day out of surgery I was 100% a patient and too groggy and too much in pain to do anything except submit to medical care. But on the second day, I noticed that I was a patient only 95% of the time – the 5 % being given to communication with friends and family. I loved doing this. On the third day, I was released and went home. What a joy it was to be among all my familiar things. I talked with my wife Susan about cancer and non-cancer stuff, read a little, made my own coffee, watched favorite shows on TV and took short, slow walks around the apartment. Sleeping during the day was frequent, but I felt that I had made the leap to being only 80% a patient and 20% a man leading his life. With each day, the percentage changed and it was always moving in the right direction.
All of that was interesting to me. And it was good. But it didn’t really answer the question of how I was going to deal with the permanent damage and side effects of surgery and subsequent radiation. Simply put, the visible damage to my face and neck, as well as damage unseen by others, was part of me now and that would not change. I hated these things. How would I live with them? I learned that if I spent too much time obsessing over this I would be moving the percentages in the wrong direction. So I arrived at the place where I decided that I would give cancer treatment and recovery and side effects no more of the precious time I have in this life than is absolutely necessary. This involved learning to stay in the present. If I thought too much about the past or the future, I found that my attitude began to deteriorate and I would be giving more time to cancer than it deserved. I needed to stay in the present and lead a full life.
I read a book by Roz Savage called Rowing The Atlantic. Reading about her mental and physical struggles as she rowed for 103 days unassisted across the Atlantic Ocean helped me to understand how to accommodate the physical and emotional damage of cancer surgery and radiation. She isolated her most harsh and difficult physical and emotional challenges into a zone in her own mind that she called her discomfort zone. And once she isolated the elements that made up her discomfort zone, she could greet these things daily as old acquaintances, curse them roundly, and get on with the business at hand. Her physical and emotional scars became symbols of her toughness. By that odd mental trick, she made the discomfort zone part of her daily comfort zone.
The elements in Roz Savage’s discomfort zone became the spark and the fuel for her perseverance. That fire enabled her to avoid a failure of the spirit. And that is what I try to do.
Five months later, in early May of 2006, I had a squamous tumor removed from the right side and it was very involved with the parotid gland again. He removed the remainder of the parotid and the tumor and more lymph nodes in the area. Further therapy included 31 radiation treatments in August 2006, mostly slanting just under the surface of the skin. The conclusion had been reached that the cancer cells likely came from my many skin cancers and that some malignant cells probably hide in the dermal lymphatic system.
In between the surgery and the radiation, with two friends whom I had taught to sail, I chartered a 40’ sloop in the British Virgin Islands and we sailed her for a week. I skippered. They did the heavy work. What a great experience. We vowed to do it every two years. And we do that.
I had the radiation treatments in August after the charter. But it turned out the radiation didn’t do the trick. On February 9, 2007, two more squamous cell tumors were removed from cervical lymph nodes on the right side of the neck by radical neck dissection. Reconstructive surgery was necessary and they used muscle and tissue from the right side of my chest. Because they wanted to keep the vascular system intact, they moved the whole business up over my collarbone and used it to close the wound in my neck.
One month later, at the end of March, 2007, two nodules thought to be malignant were removed from my right lung. To everyone’s surprise, they were benign. I was mighty pleased.
As I was recovering in the early summer of 2007, a friend of mine put me into his rowboat on Toms River and said, “You can do this.” I fell for it. In the fair weather I now row 7 or 8 miles a day. I have rowed hundreds of miles. It’s like a meditation for me.
In 2009 Susan and I organized a sailboat charter on the Croatian coast with two other couples and we sailed the boat from Split through the hundreds of offshore islands in the Adriatic and ended our cruise in Dubrovnik. Ulysses had sailed through these islands many hundreds of years ago. We had a fabulous time.
As I write this I am 71 years old. I have not had a major surgery since 2007. My side effects are numbness and partial paralysis on the right side of my face, some swallowing difficulties, dry mouth, disfigurement, nerve damage affecting my right eye and my right shoulder, and osteoradionecrosis of the right mandible which has given me a broken jaw. I can live with it all. I do live with it all. I have a good life.
This past summer (2012) I was laid low for several months by a nasty kidney disease. While rowing and sailing on the Toms River, I had increasingly seen people on the river using stand-up paddleboards. I bought one and threw it into the garage to try when I was feeling better. While I was laid up, I used YouTube to teach me how it is done. In August I began using it. What a kick. I feel like a Samoan warrior when I am out on it.
I know that I am an optimist and that not everyone is. And I know that if one is a pessimist cancer will not turn them into an optimist. So what I have written here may not be for everyone. But maybe there is just one thing in here that will help someone. That would be a good outcome.
I just try to get the best out of every day. Also, I attempt to stay fearless about trying new things. All of this has been made possible by superb medical care in Philadelphia. And most importantly, I stay devoted to my dear wife of 42 years, Susan. Without her loving help my passage would have been through much stormier seas.
REFLECTIONS OF A CAREGIVER
SIX YEARS "AFTER" CANCER
It is generally not considered funny to play pranks on the “disabled” and when that person is the man you promised to love, honor and cherish through sickness and in health, I suppose the sin is even greater. But when the impulse hit me one morning not long ago, I couldn’t help myself. For six years my husband has claimed to have “no taste, except in women.” I occasionally question the accuracy of that statement and the time had come to put it to the test.
Just before Bill sat down to breakfast, I poured plain, boiling water into his black, ceramic mug, the one that says “Still perfect after all these years.”
I watched carefully as he drank from the cup to wash down each bite of French toast. Although I can’t understand how a man whose sensitive mucosa was so badly burned can drink scalding beverages, Bill has always liked his black coffee hotter than hot and radiation didn’t change that preference. Halfway through the meal I dutifully reheated his “coffee” in the microwave, biting my tongue to keep from laughing out loud.
Status confirmed. Bill’s taste buds MIA – March 2006 to present.
In January 2006 I was thrust into a role for which I had no training or experience – and one for which I had absolutely no ambition. A sausage-like growth that suddenly appeared on Bill’s neck turned him – just as suddenly – into a “cancer patient.” And I, by default, became a “caregiver.” I would have much preferred to continue being merely “Bill’s wife.” Really.
At first glance it might appear I had plenty of transferable skills that could give me a leg up in this caregiving business. With a background that included work in both special education and emergency medicine, I had years of experience helping other families deal with challenging situations. Even playing small roles in community theater productions should have taught me to at least act cool in a crisis.
Wrong. You see, while I pursued life with “Type A Plus” seriousness, I relied on Bill’s relaxed “Type B Minus” personality to keep it all in perspective. His optimism and irreverent sense of humor kept me sane and smiling throughout our marriage. You could say Bill was “the wind beneath my wings” because he never failed to (gleefully) acknowledge every single time I “passed wind” under the bedcovers.
Too much information? You don’t know the meaning of that expression until you’ve typed “head and neck cancer” into your computer’s search engine.
It’s probably appropriate that my quirky husband’s (stage 4 metastatic squamous cell) cancer originated from an occult primary. Though Bill’s ENT searched high and low the phantom tumor was nowhere to be found, providing yet another anecdote for the collection of a man with a story for any occasion. This was one story I would have preferred not to tell.
Learning that neck dissection would leave a forked streak of stapled “lightning” running from ear to clavicle, Bill fashioned a coat hanger and two corks into “Frankenstein neck bolts” to complete the look. He wanted me to slip it on him as he was wheeled out of surgery. We laughed, anticipating the surgeon’s face when he saw the monster he had created.
But treatment for head and neck cancer has a way of taking the fun out of life, even for a funny guy, and any expectations I had for sailing through the experience on the wings of Bill’s humor were short-lived. Bill reacted poorly to anesthesia after surgery and there were no hiijinks to be had in the recovery room. Reality set in when I saw his ghostly white face retching into a basin. If this would be his “life” I knew I would have to let Bill go.
In the brief interlude between surgery and the next stage of treatment, I got “Bill” back. He chided me for not following through with our Frankenstein scheme but we giggled as we imagined the “creature” he might become after the “mad doctors” sent him on 33 trips though the IMRT machine and injected all those metallic potions into his veins.
In fact, I barely recognized the weak, skeletal, hairless, zombie-like creature that emerged. And I, too, experienced a transformation of sorts. I hunkered down for the duration, determined to maintain control. I got up every morning and put one foot in front of the other, even on days that held no prospect of laughter.
The brutal effects of head and neck cancer treatment are well-documented. We knew what to expect... but not really. If ever there were an infomercial made about chemo-radiation, it would be Bill’s voice intoning the disclaimer at the end, the one that says, “Your actual results may vary.”
· Did you ever read the small print on drug information sheets? I read every word, including the fascinating statement that a side effect of anti-nausea medications can be…nausea! We’ll never know exactly what caused Bill’s stomach distress for the entire course of treatment, but nothing seemed to relieve it.
· The brochure we received about radiation indicated it can make patients feel “tired.” It mentioned they might need to ask their boss for a reduced work schedule. It recommended a nap in the afternoon. Since Bill is self-employed his “boss” hardly noticed when he stopped working altogether; he was too busy napping. In fact, for six months Bill’s boss pretty much slept all day long, in between trips to the bathroom to deal with phlegm and vomit.
· It was suggested mild exercise like walking can help cancer patients maintain physical and mental fitness. When a grown man literally cries at the thought of walking to the end of the driveway and back, exercise clearly is not the way to “mental fitness.”
· Smoothies are packed with nutrition for patients who can swallow but even hearing the word made my patient gag. Recipes for blended beverages poured into my email in-box from well-meaning friends. They never made it out of my computer.
· PEG tubes are said to be good things for many patients. Unfortunately, much of the formula that went into Bill’s stomach tube flowed out of his mouth if he leaned forward. Not a good thing.
· Eating large quantities of Ben & Jerry’s “Chubby Hubby” ice cream actually has an inverse effect on the weight of the husband when the product is consumed instead by the wife.
As time went on I learned a lot about head and neck cancer treatment. Most important, perhaps, was to expect the unexpected. Most difficult, perhaps, was to accept a certain loss of control. A patient’s reaction to treatment doesn’t always proceed as expected. Neither does the caregiver’s.
I knew from the start I would find strength I didn’t know I possessed. I also knew I was far weaker than it would appear to anyone from the outside. I anticipated sadness and fear. But the emotion that brought me to my knees – the one I never expected – was anger.
It happened in the wee hours of the morning. We were staying in a friend’s second home conveniently located in the city where Bill was treated. I kept the alarm on my side of the bed and woke Bill at appropriate intervals for his medications. On that particular night he had been resistant and resentful. After finally submitting to my pleading he fell right back to sleep – but I couldn’t.
Tears welled up in my eyes. Not wanting to create a further disturbance I slipped from the room, hoping to collect myself with a cup of tea. Alone in a dark, unfamiliar kitchen illuminated only by glowing digits from the microwave clock I experienced a rush of dark, unfamiliar emotions. Waves of self-pity swept over me. Why Bill? Why me?
Suddenly, anger erupted in a fierce explosion of unprecedented magnitude. I hated being isolated in this borrowed house so far from friends. I hated the chemo that drained Bill’s color, the radiation that robbed his energy, the anti-nausea drugs that reduced him to an empty shell devoid of personality. I hated the cancer center. I hated Bill’s smiling oncologists, the smiling receptionists, the jigsaw puzzles in the waiting room meant to distract us from thinking – really thinking – about what we were there for, what the future might bring. I hated God.
And most disturbing of all, I hated Bill for daring to give me hope and leading me to believe this would be easy.
I shrieked and I sobbed. I hurled pill bottles at the wall and tore reams of Internet medical research to shreds. I pounded my fists on the counter and kicked at debris as it fell to the floor.
I was ANGRY – and that anger was compounded because I had no idea where to “put” such a negative emotion, especially directed toward the person I loved more than anything. How could I be angry with the man who was fighting to stay alive for me? How could I curse the same God I begged to answer my prayers?
My tantrum probably lasted all of ten minutes, but it was loud, intense, and certainly not in keeping with the controlled, stoic persona I presented in public and to Bill. Guilt, shame and confusion overwhelmed me; the storm subsided almost as suddenly as it had struck. I cleaned up the kitchen in silence and went back to bed.
Bill slept in blessed ignorance through the whole episode and God apparently forgave me for being human. He also, for reasons I will never know, answered my prayers….
The road to recovery was long and arduous, but it’s much easier to reflect on the cancer experience with a light(er) heart after six years of “survivorship.” Entire days pass without either of us mentioning cancer and my indomitable husband has all but eliminated the word from his vocabulary. Bill rarely talks about the physical “leftovers” from treatment; he cheerfully accepts life with reduced saliva, swallowing issues, hypothyroidism, Lhermitte’s syndrome, and, of course, taste buds gone AWOL.
But for me, the emotional “souvenirs” remain closer to the surface than they appear. Six years can seem like a long time or a very short time, and no amount of time can make me forget that life is tenuous and we have been so very, very lucky.
While I am grateful our “new normal” includes a healthy dose of humor, I know many other families have not fared so well or been so fortunate. My heart goes out to these patients and particularly to their caregivers, as I now believe Bill may be right when he says this experience was harder on me than on him.
Why me? Why you? Why those we love?
“Caregiving” is a job we are given because – more than anything – we care. It brings out our softer side and our hard edges as well. We may embrace it as a gift or curse the burdens it places upon us – but it is a challenge we have no choice but to accept and to deal with as best we can.
After breakfast, I confessed to Bill he had been the victim of a hoax. The joke may have been on him but I have a feeling I’ll be reminded of my treachery for many years to come. The “man with a story for any occasion” has a new tale to tell and I will hear this one over… and over…and over! I’ll roll my eyes in exasperation of course, but it’s a small price to pay for the gift of having my husband back.
To the caregivers who read this and the patients you love, I wish for you hope, fortitude, resilience and – eventually – a return to laughter. God bless us all.
GENE MONAHAN'S STORY
Editors Note: Gene Monahan, oral cancer survivor and retired Head Athletic Trainer for the New York Yankees was the Guest of Honor at SPOHNC’s 20th Anniversary Conference and Celebration of Life. He is pictured here with SPOHNC Board member Gail Fass, and Larry Caputo, husband of SPOHNC Executive Director, Mary Ann Caputo, in a photo taken at the conference.
People are reluctant to inquire as to certain subject matter such as, “Where are you with your illness, how do you feel?, how is your journey progressing, and what is your prognosis today”? Not only that, but the impacting and scary term “cancer” is seldom spoken when in these situations. Patients, loved ones, and adjacent caretakers are all included in this roster.
So, there it began with me, simply shaving in the early morning on a baseball road trip to Minneapolis that I discovered a small lymph node distended in my right neck area. Four months later I decided to be a bit more aggressive, a rather ridiculous period of medical denial, and received the news very quickly, Squamous Cell Carcinoma.
Upon the diagnosis at New York Presbyterian Hospital through my astute team physician internal medicine specialist, Dr. Paul Lee, I immediately pursued an immediate plan of treatment with a doctor who literally saved my life with his expertise, formula, and dexterity. Dr. Dennis Kraus, then affiliated with Sloan Kettering Memorial Cancer Medical Center mapped out a plan of surgery and radiation with words that I shall never forget when I inquired about my chances of surviving. He simply said, time and time again whenever I was apprehensive, “We play to win”.
Then it was time for education, preparation, and anxiety, associated with the inherent surgery, recovery, and all that will follow. People from across the country reached out in hopes of assuring and preparing me for what was approaching. Friends, colleagues, strangers, all who had lived this experience were nothing short of amazing in their honest and forthright approach. I was told frankly that this was to become the most miserable time of my life, ever. No punches were pulled, no sugar-coating, I was prepared. Or……was I?
There was little fear of the surgery. That was described in detail and proceeded very well. Immediate recovery was tough, both tonsils were removed, a genius move via Dr. Kraus, as I had cancer in both tonsils, a rarity. The weakness and lack of appetite and ability to eat was overwhelming, and through my insistence emotionally to resist the notion, I did not experience the feeding tube. Thus began the weeks and weeks of power shakes and supplementing as best as I could manage, it was miserable. There were six weeks to wait and recover until the radiation was to commence.
“Orientation” and the ensuing thirty treatments in six weeks teach you much about yourself. There is a will-power we all have that I know is basically untouched. It takes times such as these to truly tap into what we truly are all about! For whatever reasons, I strongly desired and saw it through to travel to my treatments essentially by myself with my own thoughts. The mask, the treatment sessions, the crossing off of the days on the calendar, and my fellow “patients” all served me well. There was a unique peace during the actual sessions with the machine rattling, not sure what that was about, but I know the joy of the session being complete and hearing the feet of the “team” re-entering the room, was always a joyous event and made my drive home rewarding. I could go home and cross off another day. That 30th day seemed years away.
The course of radiation left me very weak and without an appetite at all, and as predicted, the REAL tough effects of radiation set in approximately two weeks after completion. One of the best medicines during this time was my desire and fulfillment in returning to some work, albeit for only three or four hours per day, while my Yankee team was at home. When I did begin to travel, I know it was too early, but the work and having my friends/associates back was great medicine. I struggled with nutrition very much, especially on the road.
I am presently two years and four months removed from my radiation and I continue to struggle somewhat with my appetite and my food, but patience and common sense help. The follow-up visits with my doctor and oncologist physician still are a bit scary, I’m definitely not a fan of the endoscope, but I shall always remember, “We play to win”. Constant sinus drainage, chest congestion, dry mouth, and an occasional sore throat concern me at times, but I manage these things and continue my life in retirement. I learned early on, as my illness sealed my intention to retire soon anyway, that I needed a bit of an obligation, a place to go to work for a bit, and I was able to fulfill that with a bit of a part-time obligation, inherent with my previous career. For this I am most grateful, as I was lingering with apparent sadness and depression with my plight.
Paying strict attention to the educational process of this cancer journey helped me immensely. The throat rinses, the burn creams, nutrition guidelines, rest protocols, exercise regiments, physical therapy, and emotional open-door policies, were of tremendous help in retrospect. Anyone in this cancer journey benefits so much for permitting friends, family, loved ones from all over, into their lives, not as anything less than an intricate aspect of their own special “team”.
Am I a fighter? I don’t honestly think so. I feel you need to be really mad to be a good fighter and I was not so mad as I was disappointed, deeply concerned, and just simply “out there” by myself. There really isn’t time to be truly scared and to worry excessively. The time during this journey of overcoming and healing needs to be spent on positive and enriching thoughts of what tomorrow may bring.
My answer is to become involved, with what I have, and that is my life, my relationships, my work, some fun, my new pickup truck that my team gave me, and my dog Brady. I have Liz and Brady, and my kids, and this brings me peace and the will to improve and help the other folks in their journey.
My husband Mel was diagnosed with squamous cell nasal cancer in May of 2001. Side open surgery of his nose was done, where they cut the nose down the side, and removed all cancer found. The nose was then stitched back up on the side and a month of healing occurred before following up with radiation therapy. When more cancer was detected he had a rhinectomy (removal of the entire nose) in April of 2003. Mel also lost part of his upper lip due to the spread of cancer cells from wiping a bloody nose. The bloody nose was the only symptom Mel had prior to being diagnosed with nasal cancer.
When Mel returned home after his surgery, both the patient, and the caregiver began the long journey of recovery. Mel was a wonderful patient, and I learned quickly about the role of caregiver. I was told that I must change his bandage every day and clean the stitches. Proceeding like a caregiver who knew what she was doing, I began the first days of what became known as home care.
The first time I had to change the bandage, I was scared to death, as the bandage would not come off, Thinking on my feet, I soaked an entire gauze pad in the saline solution we were supposed to use to keep the area clean. The gauze pad which literally stuck to his face. Worried about how this was going to work out, I told him I had to go do something, and let it set for several minutes. I told him to just rest on the bed, and that I’d be right back. Thankfully, by the time I got back, the gauze came off nicely. I soon placed a call to the surgeon’s nurse, who became my lifeline. After explaining to her what had happened with the first bandage change, she told me go out and get some non-stick bandages and some paper tape. Mel never knew it, but I’d come close to not changing any more bandages, after that first experience.
I had covered all the mirrors in the house until Mel was ready to look at his face. It was several weeks, but when he was ready, he simply asked for a mirror. I left the room to get some supplies, giving him the private time he needed, to check out the surgery done. Once he was ready, he began to remove the newspapers from the mirrors and within three months, Mel was doing his own home care. I was very relieved, since I had crashed and burned, ending up with shingles on my right leg, which were caused by all of the stress of the surgery, caregiving and all of the emotions we were both dealing with during this most difficult time.
I never let Mel feel any different after his surgery. I would kiss each side of each cheek just before we would begin home care. He seemed to like it and I think it helped him accept what had happened and in all honesty, it helped me as caregiver. Being a caregiver can be very stressful and hard but one never knows how much strength one has until tested. Little did we know the day we went back after the first biopsy, we would hear the words nasal cancer. When the doctor realized I’d seen the diagnosis he looked at me - reading the words upside down wasn’t hard. He probably thought, oh she knows, now I have to turn around and tell her husband. Dr. DiNardo and Mel became friends and still are, to this very day.
Mel lost all of his upper teeth due to infection caused by radiation damage. He then developed a fistula (hole) in his upper pallet into the nasal cavity. A lead mouth shield was made for Mel when his gums began to bleed, but by then, it was too late. He only had one more week of radiation therapy. So many questions about his treatment plan started to come to light. We began to wonder - if we had gotten the shield before starting radiation therapy would Mel still have his top teeth?
We were then given the choice of having all the upper teeth removed or just the one or two where the infection was. He would undergo HBO (hyperbaric oxygen) treatments to help with wound healing. They say that hindsight is 20/20 vision. We now question and wonder if we had to do over again what we would decide to do. If only we’d known some of the things we know now, prior to radiation treatments, the outcome for his upper teeth and fistula may have been very different. The knowledge we now possess we feel can be shared with others.
The fistula caused major problems because food would sometimes find its way through this hole into his nasal cavity causing Mel to choke. An upper plate with an obturator to plug the hole was quickly made so that he could eat without choking.
Mel was eventually sent to have a prosthetic nose made. Despite the glue used, the prosthesis would fall off every time he would try to wear it. This was quite frustrating because he could not “feel” when it came loose, so I kept a watchful eye. Eventually, feeling like there were no other options, Mel resigned himself to wearing the bandage and mask.
Mel became quite well know in the community. His co-workers looked at him in awe of his courage to go on about the business of daily living. We have complete strangers waving at us all the time. Employees and customers in Wal-Mart approach Mel quite frequently and I constantly find him chatting with strangers about someone they know, or sometimes even themselves, battling cancer. He’s very approachable in this aspect. Mel’s journey has been a long one, and despite the physical changes to his face, he is probably one of the most carefree people I know – and this is only part of Mel’s awe inspiring story to regain his face and his normal life, as it was before cancer.
When we met Dr. Karen McAndrew she was just newly beginning her practice and we went to chat with her about getting a different kind of prosthetic made using a magnet. Dr. McAndrew said she wondered why a mold of the patient’s nose wasn’t made prior to removal for patients like Mel. It made perfect sense – things would have been much easier and she certainly had a very good point. She did however. make a prosthetic nose that would stay on if Mel jumped out of an airplane! It was truly amazing. I got to sit in on the entire procedure, beginning with the doctor (Dr. Zoghby) who embedded the abutment between Mel’s eyebrows, to the making of the nose mold by Dr. McAndrew. I carried my pen, paper and trusty camera to document it all.
Since Mel lost part of his upper lip due to cancer, Dr. McAndrew suggested that we check around to see if we could find someone to root some hair in the space just below the nose, to cover the fact that he’d lost part of his upper lip. What a great idea!
I must have sent out more than 100 emails, trying to find someone to help us, and eventually, the most amazing thing happened. Coming back from lunch one day, I checked my email and found a reply from Tina Amatula in California from dollyhairmail.com. She had also left me a very lengthy voicemail telling me that she was a thoroughly qualified artist and could do this for Mel. She also wanted to do it for free.
I emailed her back and we eventually sent the prosthesis to California. Within a week it was back, and fully rooted with a moustache. She even rooted some hair into the nostrils, to make it look even more realistic.
Tina is a very talented, determined, sweet lady, and she did not stop there. Since she was a professional artist, she pleaded with us to allow her to make Mel a soft prosthesis using Dr. McAndrew’s mold. She also wanted to do this free of charge. She would need permission to use Dr. McAndrew’s mold, and she needed lots of photos of Mel taken before his cancer and removal of his nose. She was practically begging us to let her do it. This was a challenge for Tina, so we asked Dr. McAndrew what she thought. Her response was “Go for it, what can it hurt to have extras?”
We sent Tina the extra mold. During the next year, we emailed back and forth and she shipped us some samples she made. We photographed them on Mel and mail them back to Tina for adjustments as needed. Many photos were sent via e-mail, so she could see the fit, and the color as well. It was looking really good. We still don’t know how she did it but she captured Mel’s nose as it was before he had it removed. This is why Dr. McAndrew felt that surgeons should have the patient get a mold of their nose or part of the face that is to be removed, prior to surgery. This makes it easier for them to put the patient back together. With no mold, it’s guesswork.
Mel also grew his beard out three inches as Tina had requested, and sent off the facial hair to her in California. She rooted a moustache using his facial hair and put some in the nostrils and sent it back to us. The moustache would hide the fact that he had lost his upper lip to cancer as well. We were thrilled with the results, despite one problem. The magnet was pushing the prosthesis away from Mel’s face, because it was in at the wrong angle.
After it sat in a box for three months, we called Dr. McAndrew to see if she could help. She was apprehensive because removing the magnet could ruin the entire prosthesis. I told her it did not matter - it would sit in the box looking good, or we could try to fix it. She graciously agreed, and with the help of one of her staff, she was able to fix the problem – also all free of charge, just as with Tina, our new artist friend. I am here to tell you there is much kindness in this world indeed.
Between these two amazing ladies Mel has his face back and no one even notices that his nose is a prosthesis. We go out to eat, he wears his glasses and sunglasses, and we can attend weddings without fear of taking attention away from the bride. We attended a wedding in July 2011 - something we did not do before. After leaving the wedding, we went to Outback for dinner. Before the prosthetic, we just turned down invitations to everything.
In early 2011 Mel developed hypothyroidism, as a side effect of the radiation treatments. He’s now on thyroid medication and doing very well.
Having gone through this journey as caregiver, I found comfort in writing and have written a Caregiver Booklet, which is available to anyone who asks for a copy. We also have found that volunteering through SPOHNC, as members of their National Survivor Volunteer Network(the patient/caregiver match program) not only helps others but helps us as well. We wish we’d had someone who had already gone through this journey, with all its twists and turns, when Mel got his diagnosis. We now realize that some decisions we made early on may have been different, had we had all the knowledge that we now possess. We hope to be able to help others in the early stages of their diagnosis and make a difference.
“I wish I had better news for you”. That brief statement from my ENT physician back in August of 2001 is still as clear in my head as the day I heard it.
“The needle biopsy showed a malignancy”. Malignancy?…cancer?…I thought this must be a mistake…my biopsy must have gotten switched with some other…how could this be?
And so began the roller coaster of emotions which all cancer patients feel when first diagnosed. First disbelief…then confusion… and anger and frustration.
My story actually began about six years before that conversation with my doctor. I had discovered what felt like a small cyst on the left side of my neck. My primary care doctor referred me to the ENT specialist, who sent me for a CAT scan and decided we would keep an eye on it…there was nothing extraordinary about it at that point. After another check or two in the following months, I basically forgot about the small lump…and it never bothered me, until the summer of 2001 when I realized that it had gotten larger. That’s when the ENT doctor took the biopsy. The official diagnosis was squamous cell carcinoma of the neck.
I was referred to another specialist, an ENT/Head & Neck surgeon at Long Island Jewish Medical Center, who explained what needed to be done…surgery, specifically a neck dissection, followed by radiation…the experience was becoming more frightening…would I be deformed by the surgery? What further damage would the radiation cause? And what if I refused to have the radiation done? Once again, many emotions and fears swirled inside my head. The operation was scheduled for September 19, 2001, and while I was waiting for the days to pass, and becoming more apprehensive, September 11 happened, and everything was suddenly put into perspective. The emotions I felt on September 11 seemed to diminish the significance of my upcoming surgery…I was not as worried about myself anymore.
The roller coaster continued. The surgery turned out to be longer and more complicated than anticipated, due to widespread lymph node involvement in my neck. It took 5 and ½ hours to clean up the area and take sufficient biopsy samples. In addition, the cancer had enveloped two of the cranial nerves on the left side, so those had to be sacrificed. The jugular vein on the left side of my neck was completely collapsed and lost, and the carotid artery was enveloped by the malignancy as well. A very aggressive Stage 4 cancer. Luckily, a vascular surgeon was able to “peel away” the cancer and save the carotid. All pretty heavy duty stuff…unbeknownst to me, the surgeon was concerned about my future abilities, in particular, swallowing.
But before this story becomes too depressing let me tell about some good news: The cancer, although aggressive, seems to have been confined to the neck area…no distant metastases have ever appeared on scans or in fact. My voice, which was all but lost because of the paralysis of my left vocal cord, has returned.
My swallowing reflex has been almost perfect…I thank goodness for all of these “small favors”.
Unfortunately, along came radiation treatments, a necessary “evil” to insure that the malignancy would not return. I began the first of 37 treatments in March of 2002, at Stony Brook University Hospital. The physician and nursing staffs there, as at LIJ, were wonderful throughout my treatments…extremely dedicated and caring individuals who made it all bearable. I tried receiving amifostine to protect the salivary glands from radiation damage, but after three weeks of nausea I decided to continue the treatments without that drug. Newer protocols call for good hydration by drinking a fair amount of water before each of the amifostine treatments, and this helps to reduce the nausea. I still have a diminished amount of saliva, but the dry mouth has improved over time. The sense of taste which I lost after the treatments, has returned completely. Which brings to mind a quote from a physician on a teleconference on head and neck cancer a couple of years ago. She repeated the words to a famous song…”Don’t it always seem to go, that you don’t know what you’ve got ‘til it’s gone”. If there is any good news from the cancer experience, for me it is the renewed perspective on all of the things about our body which we take for granted. Prior to my cancer, I was healthy but did not appreciate that good health the way I do now. I realize that it is not an “entitlement”, but rather a gift…a person is very fortunate to have it.
What is so important in all of the recovery from surgery and radiation is patience. The improvements are not dramatic…rather, they are incremental, in baby steps, and slowly there is a realization that we have a “new normal”.
And thanks to SPOHNC, the future is seeming even better. In addition to the volunteer help I provide by phone to newly diagnosed patients, I have begun plans to organize a support group for Suffolk County, NY, which is the Eastern part of Long Island. This would be adjacent to the group in Nassau County, the Western half of Long Island…this is the group run by Nancy Leupold, SPOHNC’s original founder. Because Long Island is so “long”, 120 miles to be exact, there is a need for a support group for the many patients living in the Eastern half. I am excited about this new opportunity to help others with head and neck cancer, just as SPOHNC has helped me for the past five years. And finally, of course, I have had the privilege of being asked by SPOHNC to tell the story you have just read. I hope that the fact that I’ve come through all of this with positive results and feeling good about the future, will give other survivors the hope they’ll need to get through their own ordeals. I wish you all well.
A TIME FOR SHARING... My Cancer Journal: 2009
On March 09, 2009, as I was washing my hands in front of the ladies room mirror at work, I yawned and suddenly I noticed a growth on the left side of my tongue. I made an appointment with an Ear, Nose, and Throat doctor (ENT) for the next day. As soon as the doctor saw the growth he felt that it needed to be looked at by a specialist because he, “had never seen this type of growth before and this might be one for the books.” He told me, “You could be a case study.”
At that point, I just viewed the strange growth as an inconvenience that was interrupting my busy work schedule.
Timing Is Everything
I was able to get an appointment with the specialist on March 19th. In the meantime, the thing in my mouth was growing rapidly. When I saw the specialist, he originally felt that this was probably a pyogenic granuloma, which is a common, benign growth, but he biopsied it to confirm his diagnosis. I was still thinking: one ambulatory surgery and I would be back at work; no real changes to my life. I had never smoked, abused alcohol, chewed tobacco, or been exposed to secondhand smoke. Since neither my parents nor my husband ever smoked, I had no reason to suspect the growth could be something else. The growth was atypical in many ways. It grew rapidly, getting bigger and bigger each day and the tip was showing signs of necrosis, or tissue death. It was not adhering to my tongue but rather growing parallel to it. It was getting so big that I was joking with my son-in-law that he better watch it since I was becoming “the mother-in-law with the forked tongue!”
By March 27th it was becoming difficult for me to eat, my speech was affected, and swallowing was difficult as well. The extraction was scheduled for March 30th as an outpatient procedure, and my family and I were becoming concerned because the pathology results continued to be inconclusive. As I was waiting to be wheeled into the operating room, I was told that the pathologist saw traces of cancer but so far had been unable to determine what type of cancer. Without an exact cancer diagnosis, my surgeon did not feel it was prudent to remove the growth. Since I was already prepped for surgery, a tracheotomy was done because the growth was starting to affect my breathing. And I would need it once I had the extraction. So there I was, sitting in the pre-op room believing that I had a noncancerous growth, that I was going to have a procedure, go home after a few hours, and get back to my life.
Suddenly, I had to deal with the shock of being diagnosed with cancer, still not knowing which type, and with having a tracheostomy. My first thoughts were, “this cannot be happening to me!” I felt like putting my head down and crying but realized that would mean I was giving into the disease. Luckily, my oldest daughter (“the doctor”), who is a neonatologist and my medical advocate, was with me. She maintained her calm demeanor and advised me to agree to the tracheostomy. I had to trust her, after all her father and I had invested thousands of dollars in her education! While inserting the tracheotomy, my surgeon decided to remove about two-thirds of the tumor (it was no longer a growth!) to facilitate my eating and breathing. Also, he would have additional tissue samples to send to the pathologist for testing. I stayed at the hospital for 5 days and the pathological results were still inconclusive.
My Busy Schedule
I was released to go home on April 3rd and that same night, at 10:00 pm, the hospital called my daughter to tell her that the results finally had come in and I had “spindle cell variant squamous cell carcinoma.” It was just my luck to have a cancer variant that was difficult to diagnose and a tumor that was atypical. Because of the size of the tumor, it was designated as Stage III Tongue Cancer. As scary as this all sounded, and since ignorance is bliss, I was confident that we would set a date for the operation, remove it, do some radiation, and then my life would go on as if there were no interruptions. I was still focused on getting this done quickly, so that I could go back to work. I might not have mentioned this, but I work for an accounting firm and it was our busy tax season. I had no time for this nonsense! I also omitted the fact that our daughter “the doctor” was 8½ months pregnant. We scheduled the operation for April 14th after meeting with a plastic surgeon who was going to handle the reconstruction of my tongue. It was, of course, inevitable that 2 days before my surgery, my daughter went into labor and on Easter Sunday our beautiful third grandson was born. Going to the hospital to visit them and holding this beautiful gift, I realized how blessed we were and I made a silent promise to him that I would fight with every ounce of my fiber to be around and love him and be part of his life for a very long time. The surgery lasted approximately 8 hours, followed by a 2-week stay in the hospital. The reconstruction team used tissues from the inside of my cheek to rebuild my tongue. To ensure that blood was flowing to my “new, improved tongue,” part of my cheek remained attached to my tongue, with tissue going between my teeth. (This brought a totally new meaning to the phrase “tongue in cheek”). All who saw me, the nurses, the doctors, my family, would tell me that I looked great. On the other hand, when I looked in the mirror I saw a “Quasimodo” look-alike: a disfigured face looking back. I could neither speak, nor eat, which as far as I’m concerned, is a curse for a Greek woman! Again, I was extremely lucky to have my second daughter, “the lawyer,” take the time to be my voice and to be helpful with the little details that arise with everyday hospitalization.
I went home with my tongue still attached to my cheek through my teeth−unable to chew, barely able to speak, and in pain. Percoset, my new friend, helped me through these difficult days. This was when my husband realized that his caregiving would become an essential part of my recovery, and he stepped up to the plate. He tried to have me drink Ensure, but I still had some taste buds and the taste made me gag. He took it upon himself to emulsify any and every meal that he cooked for himself. I had brown liquid that was pork roast and mashed potatoes; white liquid that was steamed fish with vegetables, etc, etc. He truly became the “Iron Chef” of emulsified and liquid foods! Each and every day, whether I could eat or not, he insisted that I join him for dinner. This was the only time when he would not allow me to stay in bed or on the couch. I love to eat and there I was, smelling and watching him eat things that I used to enjoy. During those times I hated him with every fiber of my body, and I sat there wishing I could magically make him disappear. In retrospect, I realize that this was a great strategy for forcing me to get as much nutrition as possible to the point where I could partake in the great meals he was preparing.
My Daily Fare of Radiation
Since the cancer was stage III the doctors decided that I should have aggressive daily radiation for 6 weeks. In mid-May, in an outpatient procedure, the plastic surgeon detached my tongue from my cheek and advised me that I could now eat anything I liked. What a joke that was! My tongue was swollen and painful, I would choke if I tried to eat even yogurt, and the doctor had the sense of humor to tell me that I could eat! Obviously he never had a glossectomy. Thank you Percoset, you will always be special to me! On May 18 I started radiation. The first week was extremely difficult. I am borderline claustrophobic, and having a face mask immobilize me on the table was extremely confining and uncomfortable. Even though sessions only lasted about 15 to 20 minutes, each felt like a lifetime. I love the beach and I have travelled all over the world. To control the panic I was feeling I tried to visualize walking and swimming at a different beach each time. The mind is powerful thing, and I learned to control the panic I felt. While I was treated the technicians piped some music into the room. I realized that my sessions were lasting about 5 songs. So I developed the habit of singing the songs in my head and was thrilled when I heard the third song finish because I knew the session was more than halfway done. I also would like to point out that the radiologist, the nurses, and the radiation therapists were terrific. They truly tried to be compassionate, kind, and supportive every day.
Those were difficult days, but the staff played a big part in my ability to handle those difficult days. The side effects of radiation are brutal. Until you experience it, you do not realize how debilitating it is. I refused to have a feeding tube. I considered it a weakness and a form of surrender to the disease. I insisted that I would continue to eat, or rather slurp, whatever my husband placed in front of me. Each week eating became more difficult, but I was determined not to lose too much weight. I survived on protein shakes, my husband’s gourmet (!) slurpees, and what my doctors called the “Mangones diet”: hummus mixed with babaghanoush (eggplant dip). I ate bucketfuls of the mixture, and it provided me with the protein and fiber I needed to keep my strength. I also felt that I had to return to work. The psychological impact of being inactive for 3 months was starting to affect me. I was starting to feel sorry for myself. Luckily my employers were extremely understanding, and allowed me to return on a part time basis in June. It was not an easy time for me. Not wanting to be exposed to mass transit with a radiation-compromised immune system, I drove each day. Some days the return trip was so bad that I considered stopping at a hotel on the way home, calling my family and telling them to come get me. I was so exhausted physically but kept pushing myself to go on, one mile at a time. I used different landmarks on the way and kept focusing on reaching each one of them, without thinking of the total distance. I was also not prepared for some of the other side effects of radiation. I was lucky that my skin tolerated the radiation better than most (maybe my exposure to the Mediterranean sun had something to do with it!). The mucositis, the inability to swallow even my saliva, the thrush, the loss of my taste buds and the total exhaustion I felt made me wish I did not agree to the radiation therapy. I kept bargaining with my radiologist to reduce the number of sessions, but to no avail! Those were tough days, and it got a lot worse before things started to get better. Two weeks after the radiation ended I could not eat anything at all. And then, lo and behold, one day about 3 weeks after the end of radiation I woke up (a total of 35 lbs lighter) and felt like half a human being. Each and every day I felt better and stronger.
Counting My Blessings
It is now one year since my surgery. Eating is still difficult at times, but I eat what I can and enjoy every morsel of it. My taste buds came back and as long as I sip water with my meals, I can enjoy a variety of food. Speaking can also occasionally be difficult, but everyone understands my speech. My energy is back. I need to have a bottle of water with me at all times and my mouth and tongue do not feel like they used to before the surgery. However, I consider myself blessed and lucky. We had a rough 2009 but some wonderfully positive things happened to our family that I focus on (remember my little grandson?) rather than on my cancer experience. It is also important to point out that this journey humbled me. The support I had, and still have, from so many people was so unexpected. There is no doubt in my mind that all these gestures of love and support helped me recover. They made me stronger and enabled me to fight. No one that goes through something like this journey should have to do it alone. That is why I decided to join SPOHNC with the hope that I would be able to give back to others the support that I found around me. As a wise man told me: “Yesterday is the past, tomorrow is the unknown, but today is the present.” I have learned to enjoy each and every one of the presents I get and be thankful for them!