“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!