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Squamous Cell Carcinoma - Nose & Palate

© The Sip Of Soda That Was Not Meant To Be, by John Lehner 10/25/2005

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I was enjoying lunch in mid January of 1997, at a local Pizza Restaurant, with one of my staff. That's where my journey began. I was about to take a sip of my soda through a straw and suddenly realized that I was unable to create the suction necessary to draw the soda up the straw. There was a small hole in the hard palate of my mouth. I cannot begin to describe the cold feeling that I had on the return trip to my office. I knew, deep inside, that there was something drastically wrong.

I immediately did a search of local ENT physicians and made an appointment for the following month. I also contacted my primary care physician who, after hearing of my problem, wanted to see me immediately. Following his examination, he called the ENT physician and had my appointment moved to the next day.

As long as I live, I will never forget my ENT appointment. After a thorough examination, he looked me in the eye and said, “I think it may be cancer”. It was as if someone pulled a cork from my toe and I felt the life drain from me! I thought “No, it can’t be…I have three young children, twin three year old daughters and a seven year old daughter…not to mention that I am only 55 years old!”

Following a biopsy, I got the dreaded telephone call that it was indeed cancer. My ENT advised that I not be treated at a local hospital; but rather seek care at a cancer center. Living near New York City and working in a Cancer Prevention Center at the time, I was well aware that Memorial Sloan Kettering Cancer Center had a worldwide reputation for quality cancer care. I must admit, however, that I entertained avoiding surgery and simply pursuing radiation treatment. A brief discussion with my Pathologist at the Prevention Center dashed that illusion.

My appointment at Memorial Sloan Kettering ended with a confirmation of Stage IV Squamous Cell Carcinoma of the nose and upper palate. The surgeon was frank and honest and told me that surgery might require the removal of my nose and upper jaw and that, at Stage IV, my survival time might only be two years. Knowing the importance of obtaining a second opinion, I traveled to John Hopkins in Baltimore Maryland with my x-rays and pathology slides in hand. Their consultation was identical to Memorial Sloan Kettering’s treatment suggestions and survival projection. I chose Sloan Kettering for their reputation and close proximity to my home.

In dealing with what was ahead for me, we gathered the family together and explained what might happen to me in terms that the twins and my seven year old could understand. I explained that I might come home with a bandage on my face and my arm in a cast and that I would be very weak. My wife and I made it a point to contact the school where all three children were enrolled and explain the situation. The school was extremely cooperative and made it clear that the children would be able to visit the school psychologist at any time that they felt a need. Teachers were alerted and our family was prepared to provide support. All was set for “the day”.

On March 7, 1997, with my mind numb and resigned to my fate, I entered Sloan Kettering and underwent an 18-hour surgery that involved four different surgical teams…Dental Oncology, ENT Oncology, Orthopedics, and Plastic Reconstruction. I had my nose, and upper jaw and palate removed. My jaw and palate were reconstructed with bone, tissue, and vessels taken from my wrist. Bone was then taken from my hip to replace that taken from my wrist. Tissue was taken from my thigh, as a graft, to further reconstruct my palate. I spent nearly three weeks recovering in the hospital. A prosthetic nose was made, along with a specialized denture with a plug that would block the hole left in my upper palate. After all this was done and fitted, I was discharged.

Upon my return home, my twin girls called me “Daddy No-Nose”. When I removed the nose to sleep, they would hide it. In the morning, we would play “hot and cold” to find my nose! Their humor and innocence helped us all make it through a very difficult period of acceptance. The other key element in my recovery was the Visiting Nurse Service that came to change my bandages. Just as important as their nursing; they also provided Social Service support to both my wife and me in dealing with the emotional aspects of what had transpired. This experience had turned our lives upside-down.

My next challenge was the 37 treatments of radiation. The fitting of my face mask and the initial treatment that had my head and mask bolted to the treatment table were very scary in the beginning. They did allow me to bring in my own CDs to hear my music during treatment; which helped to calm me. Also, to help relieve the burden on my family, the American Cancer Society provided a volunteer driver to take me to my radiation treatments.

As the treatments progressed, I experienced more and more exhaustion; to the point that I could hardly get out of bed to make my radiation appointments. I experienced severe burning of my mouth; to the extent that I was unable to eat or even take fluids by mouth. I was readmitted to the hospital for three days due to dehydration and for insertion of a feeding tube and re-hydration through IV. My meals consisted of Ensure through my feeding tube and various puréed foods. I celebrated my Easter dinner provided by a neighbor, prepared in a blender and fed through a feeding tube…the burps were wonderful and very tasty!

My recovery was slow and required a great deal of support from neighbors, family and friends…not to mention patience! The outpouring of care and support amazed me! Staff from my last position in Boston (four years prior) even participated in a midnight run in my honor! That touched my heart and gave me further courage to keep going. Short walks were all I could manage in the beginning. They did become longer and longer as my strength gradually returned. My sense of taste was very minimal, yet I was blessed that my saliva was not affected by the radiation treatments as others had experienced. I also found two very helpful internet cancer support groups that allowed me to learn more about my cancer and to participate in helping others who were just diagnosed.

In the end, six months following my surgery, I was back to full time employment. I had achieved the job of my dreams. Eight years later, I retired and am now enjoying my new job...reporting to my 15 year old daughter (who thinks she is Chairman of the Board), and twin 11 year old daughters (who think I am the Bank of England), and my wife who is quite the task master.

My message to all who read this is simply:

Cancer is the gift of a wake up call to our own mortality and the importance of making use of the gift of each and every day. None of us can make it through the dark tunnel, that a cancer diagnosis places us in, and into the light without the help, love, and support of others…most importantly, family. The burden that a patient endures is equal to that of the caregivers. Having been here surviving cancer for eight years, I can only say that I begin each day with gratitude for the gift of another day and the support of those who held my hand throughout my journey. I pray for those still journeying through that dark tunnel, and those of our cancer family who have passed onto a better place (I remember each who cross my path by name as if they were brothers and sisters…which they indeed were!).

Survival is a four leg chair…support from others, your faith in your own God, your determination to be here a while longer to contribute, and the skill and knowledge of your medical providers. Know that you are important, and have a great deal to contribute. You can assist others just beginning that journey through the dark tunnel of cancer. Do not hide and be ashamed to let others know your survivor’s strength. Reach out to others and help them to understand that there is light at the end of the tunnel and that they can do it, just as you have…if only for another day.