Spring smells so sweet this year
By Deborah J. Staveley
For year or maybe longer I felt a lump on the right side of my neck. At the age of 46 years, I finally decided to have it checked by my local E.N.T. doctor March ‘93. My husband David and I had four children; they were 9, 19, 21 and 22yrs old. In I went, the doctor examined me and did that horrible laryngoscopy and said, “You need to have it out!” Advice I should have taken and made me later realize that the local MD often has sound advice. Before I knew where I was, I was scheduled for surgery and left the office in shock. Being an RN I thought what about my facial nerve? Do I really need this surgery; maybe I should seek a second opinion? I cancelled my surgery and went to a very prominent otolaryngologist in Boston. He did a fine needle aspiration biopsy in his very elegant office, and sent me for a sialogram and I waited for the results nervously. Eventually his nurse called me on the phone several days later and said, “no problem it is probably inflammatory” and gave me a prescription for antibiotics. Good, I thought, that is the end of that, no surgery. I guess that is what I wanted to hear.
Five years later, now living in Atlanta, I still had the lump. Many regular doctor visits and nothing was ever said about it. I was still working at a local hospital and always aware that I had a lump. A Physician’s Assistant I was working with suggested I should have it checked and recommended an otolaryngologist. Appointment made, I sat in his office – he examined me and said we needed to take it out; there was a 60% chance it was cancer. Driving home I felt sick, 60%, is that good or bad? In my state of trepidation my brain could not compute this for me. (Nowadays every time I drive past his office I feel that sinking feeling.) My surgery scheduled, I was in total disbelief. Was this really happening? I must have known because every time I went into the hospital to work, I would burst into tears; I was terrified. At my pre op visit I had a list of so many questions but I could not see it for the tears welling up in my eyes. This was all happening around the time Princess Diana died and music would even make me cry. All this when my tennis game was becoming quite good!
February 19th ‘98 came and we drove to the hospital fearing the worst. A radical neck dissection was performed and my family were told in the crowded waiting room, “the frozen section revealed Adenoid Cystic Carcinoma and it has spread.” Oh how I know those words now but we had never heard of ACC then. I woke up in my room surrounded by David and my four children. The nightmare begins. Emily my youngest daughter was a vulnerable 14yr old, a freshman in high school; she was as white as a sheet. This had a huge impact on her life. I ask “is it cancer?” and David said, “Yes it’s cancer” we don’t say another word about cancer. I just hope it’s a bad dream and drift back into my narcotic stupor. Everyone is crying. Rebecca is very loving. David needed to go home – alone – he was so sad – he returned at 5 a.m. Emily stayed with Miranda my oldest married daughter. Robin stayed with me all night and in the early hours I asked him again and he confirmed what I did not want to hear! Wow what was happening! At that moment I just wanted someone to shoot me – a mother who did not even allow toy guns in her house. Miranda immediately went to the library at the hospital and researched this cancer, desperate to find out as much as she could. I was desperately depressed. As an RN I had witnessed the horrendous effects of cancer treatment. I did not want to go on living. But my family could not bear to see me give up. I was discharged home after a few days to recover for two weeks and return for more surgery. Miranda had placed a huge vase of my favorite pink tulips in my room. Friends and family poured into my house. David was so supportive and totally took charge.
My primary cancer was in the submandibular salivary gland and had invaded the external carotid artery, floor of my mouth, mandible and traveled along the nerves as far as the surgeon could see. My recovery was pretty good after that first surgery. Now my surgeon wanted to do an extended upper neck dissection; I asked him to be conservative. After a lot of research I decided on quality of life. I knew this surgery could be very disfiguring and might require a tracheostomy and feeding tube. Obviously a surgeon feels he should remove all the cancer for the patient to survive but I felt I could not live like that. My granddaughters would have been terrified to look at me. The second surgery was two weeks later. He sawed off part of my mandible, removed three nerves, external carotid, jugular, muscle and part of the floor of my mouth. In recovery the worst pain ever! A couple of days later after leaving ICU I sat up in my bed and cried with my husband because I could not even swallow Jello. Speech pathologists helped me. What had my life come to? Was this the end of my life? Were we not to grow old together? It looked pretty grim. I would look out of the window and see the traffic jam on the highway and wish I could be in a traffic jam again. I watched the builders work on the new women’s hospital. Life was going on and nobody out there knew I was watching. Eventually discharged home, I felt so weak I could not even wash my own hair. Rebecca was there to help me. My neighborhood brought food for my family and had my house cleaned, they were fantastic. My 81yr old mother came to look after me when my wonderful husband had to go back to work. I was no longer in control.
Two weeks later I was scheduled for my photon radiation therapy simulation. Talked to the radiologist (young enough to be my son) for a very long time with a dear friend taking notes. Then the terrifying experience of having the facemask molded to my face, a plastic mesh with only holes for your eyes, nose and mouth. Then they pinned the mask, with my head in it, down to the table with screws, and did a trial run! Pretty scary – I am sure it will be considered barbaric in years to come but for now it was going to get rid of all those cancer cells. I did not want radiation. I was going to do the macrobiotic diet! However everyone persuaded me to do it. Goodness knows what else it was going to do to me. The first two weeks of radiation were O.K. I even went to work for a couple of days. I felt nauseated and after that I just crashed. Hyper fractionated radiation for seven weeks was supposed to have the least side effects. Fortunately I had chosen a facility only 10mins from home. Going twice a day was exhausting and I ended up by sleeping most of the time in between. I think this was my way of coping but also I had a very difficult time swallowing. My mouth was full of sores; I could not even eat ice cream so I ate very little, mostly very mild pureed foods. It became excruciating to swallow and I felt nauseated most of the time. Losing weight every day, I lost 65lbs. My neck became very burnt with open wounds and felt as if I was being strangled, it felt so tight. This was becoming my own private Hiroshima. It became increasingly difficult to open my mouth and I was advised to open as wide as I could and exercise it with stacks of tongue depressors. This became a ritual but the trismus had set in and still I cannot open my mouth wide enough to eat a sandwich. My husband wanted me to look forward to a trip to Aspen in September. Giving me time to recover enough to enjoy. The radiation effects went on for several weeks post radiation. Aspen was a glorious blaze of yellow aspen trees. David had taken me to a place of serene beauty. Peace.
My children all reacted in different ways to this catastrophic event in our family. Miranda was angry – she could not understand why I did not wear my make up or earrings – well my face was very sore. Emily was lost. I remember when she and David were to attend a wedding towards the end of my radiation; there was no way I would ever have been able to go. They came up to my bedroom to say goodbye – she looked so pretty and sad. The pain medications were ruling my life. I could not even watch television it made me so dizzy. Robin gave me lots of hugs along the way and he happily met his lovely wife during this period of our life. Rebecca was a great support for Emily.
The impact on my life has been especially difficult at social occasions. Eating, talking, smiling, sleeping and singing are all painful for me, even a hug if it is on the wrong side of my face. Constantly I battle a dry mouth and am never with out my water bottle. I thank God every day that it was not my children that were diagnosed with this horrible cancer. Then I think it must be so awful for my husband having a wife with cancer. He has been absolutely amazing and was incredible in helping my recovery. He made me breakfast in bed for such a long time. Very soft cereal at first that would take me more that an hour to eat and then the menu changed to scrambled egg. It still takes me forever to eat and I need lots of liquid to swallow. Now I do not like to have breakfast in bed, too many horrible memories.
SPOHNC was a wonderful site to find on the Internet and from there I found ACCOI and that has been a life saver for information. I was given so many books to read to help inspire me. Eventually I joined a support group that was enormously helpful when I felt so alone in this battle. There are so many young people stricken with ACC, I feel very fortunate that I have lived a good life. It must be agonizing for their parents to see this happen to their children. My garden has become my therapy. My tennis team welcomed me back and I played in Emily’s little tennis dress! I cannot believe I got that thin. I went back to nursing for a year and then after some abnormal scan results I decided to “take time to smell the roses.”
A year post op. in March ‘99 my MRI noted a possible recurrent tumor and a CT guided needle biopsy was performed with benign result although the area was very painful and still is. My surgeon told me to get on with the rest of my life since I “would not let him remove half my face.” I found that comment upsetting at the time but now in hindsight he probably was right – why go looking for trouble. In June ‘99 my MRI suggested a possible tumor at the skull base that sent me flying back to Boston and a high resolution MRI showed only flow changes so I dodged another bullet. The exceptional MD I saw asked me to write a list of things that were good and bad in my life and I found the good far outweighed the bad. He asked me to read “Cancer as a Turning Point” by Lawrence Le Shan - it is a life-transforming book. Robin’s wedding was in eight months and we were expecting two grandbabies that summer. Since my diagnosis we have had four granddaughters born at the women’s hospital that I had watched being built at my darkest moment.
I went back to nursing a year ago and love that I am living my life. Every day is so precious. Emily has good friends who have lost parents to cancer and I am so sad for them, they were not even diagnosed when I was. I too have lost friends to cancer. I am blessed to be alive. Every time I have any scans it seems there is something abnormal but it either disappears or it is stable and I am told not to worry about it. That is the attitude I am going to take. I’ve gained all those pounds back and look fairly normal, droopy lip and atrophied tongue so my speech is a great effort but people say they do not notice. I still have a lot of pain but my doctors say everyone in the waiting room has too. I’m still here six years later – Hooray! I don’t seem to have any tears left and have become a much calmer person. Emily is now a junior in college and guess what her major is – Speech Pathology! I am so proud of her. I enjoy my garden, painting, reading, and music and love to hike and even working and traffic jams are good too. I do not have as much energy as I used to have but every day is special. To quote a well-known cancer survivor “Get involved, be a participant and understand your disease. Do not give in to that cancer! There is no such thing as a bad day.”
As I sit on my front porch listening to the birds sing, spring has sprung and the flowers look even more beautiful; the blossom is so fragrant. Life is even sweeter than it was before. It’s almost as if I now see life through rose colored glasses.