“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.