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Dave

Meet Dave

Participant since 2005

Photo credit: Leonard Beeghley Photography

Dave’s Story

Dave says, “Radiation is the gift that never stops giving.” He says it with a friendly smile, but there is nothing funny about his story.

In 2004, a biopsy revealed Stage IV squamous cell carcinoma of the head and neck. Based on what doctors told him, Dave opted to begin with radiation and concurrent chemotherapy. After this treatment, a surgeon cut away a large portion of the left side of Dave’s neck, towards his shoulder. He recovered well. However, years after treatment, radiation took away his voice, his swallowing, use of his left arm. Cornucopia helped him heal and connect. Through Cornucopia, through Dave, other cancer survivors learn to pause and ask more questions. “What is the worst that could happen” is a scary question. Dave learned the answer the hard way. Although is voice is a whisper, his story is a brave command to listen, to ask, to share.

Read the rest of Dave’s story below.

Dave says, “Radiation is the gift that never stops giving.” He says it with a friendly smile, but there is nothing funny about his story.

In 2004, Dave went to his primary care doctor to have a lump on his neck looked at. He says he was, “healthy as a horse.” He did not drink alcohol or smoke and stayed fit through running, rock climbing, and golf. He taught history and philosophy at a local high school, coaching the school’s basketball team early in his career.

Doctors biopsied the lump and found Stage IV squamous cell carcinoma of the head and neck. Dave says the diagnosis was, “luck of the draw.” Some luck.

The oncologist told Dave he had one chance to be aggressive in treating and hopefully curing his cancer. The aggressive approach had two options – surgery followed by radiation or radiation followed by surgery. Because the tumor was aggressive, chemotherapy was an automatic part of the treatment plan. Based on what the doctors told him, Dave opted to begin with radiation and concurrent chemotherapy. Radiation and chemotherapy are toxic to cancer cells. They are also toxic to healthy cells. During and after radiation, Dave lost 30 pounds. He was not a big man to begin with. Doctors suggested a temporary feeding tube, but Dave wanted to continue to try and eat normally.

The primary tumor could not be identified, so after radiation and chemo, the surgeon cut away a large portion of the left side of Dave’s neck, towards his shoulder area. The surgery preserved his sternocleidomastoid muscle, which helps head and neck movement. Six months after surgery, he returned to teaching part time, his speech and movement intact.

From surgery until 2011, Dave was able to maintain many of his daily activities. He was most affected by neck stiffness and pain from the surgery and radiation. At times, the pain was debilitating. He sought relief from pain medicine, Botox injections, acupuncture, and hypnosis – nothing brought relief. Then, in 2011, delayed radiation effects affected his ability to speak. The muscles controlling his swallowing also become weak and ineffective. He started to aspirate food and saliva, which often leads to lung infection and hospitalizations. Dave had no interest in spending more time in the hospital. Doctors inserted a feeding tube in 2012 and Dave stopped eating, receiving all of his nutrition through the feeding tube. Now, every few minutes, he spits into a plastic beaker that he pulls from his pocket. His saliva is much safer there than down in his lungs, losing its way past his damaged and ineffective pharynx muscles.

Dave tells his story calmly, anger present, but in check. He uses a microphone and small speaker to be heard. His voice is low, thick, strained, and raspy. His effort to speak is like a child who has just learned to swim, competing in a swim meet. He is focused, intent, determined, and the effort seems exhausting. After damage to his speech, after insertion of his feeding tube, Dave then lost use of his left arm. He developed brachial plexopathy – nerve damage, again a delayed effect of radiation.

Throughout his cancer experience, Dave says he learned more from nurses than doctors. He says, “Doctors don’t tell you much at all about worst case scenarios.” Informed consent is more fiction than fact. How is it possible to truly understand what it means to lose basic functions of the body? No doctor clearly said, “If we do this radiation, we can kill the cancer cells, but you may never eat again.” His story carries the weight of remorse. If only he had foresight into all that radiation would rob from him, he may have asked different questions, approached his treatment differently. His losses are profound – talking, eating, exercising are nothing like what he had before cancer and treatment.

Dave first learned of Cornucopia Cancer Support Center from a friend of his wife. Cornucopia is a local agency providing non-clinical cancer support services to patients, survivors, and caregivers at no cost to participants. The friend said, “come on over, let’s show you what we’ve got.” Dave describes being astounded by Cornucopia’s offerings. He learned about massage, reiki, polarity, and acupuncture treatments.

Radiation plagued him with dry mouth, damaged his salivary glands. After one acupuncture treatment, he had twice the amount of saliva. He says the treatment, “was magical” – he couldn’t believe its immediate effects. He finally experienced a bit of relief from his dry mouth. He received massage from a specialist who knew how to heal bodies damaged by surgery, radiation, and chemotherapy – supporting the lymphatic system without damaging tender tissues.

Dave wanted to start a support group for others living with head and neck cancer. He approached Cornucopia and they collaborated to start the group, with Dave as facilitator. The group is small, few people get his type of cancer. Together, patients talk about foods they can eat, community resources, and opportunities to connect with holistic practitioners. These practitioners take bodies broken by cancer and treatment and bring healing and a sense of wholeness. Because nobody on his clinical team mentioned the support available through Cornucopia, Dave now tries to spread the word going the other direction – he outreaches to local cancer centers, telling them about the depth of services and resources at Cornucopia. He says, “Cornucopia acts as a legitimate clearinghouse for different ways to go about healing from the after-effects of cancer and treatment.”

Dave retired in 2012 and says, “I have no problem at all with retirement.” He works around the house and still participates in sports. He cannot swing a golf club, but he can chip and putt. He manages a few minutes of tennis with his daughters before his arm gives out. He says that he performs at about 20% of his ability prior to the radiation damage. He does not worry about cancer returning, now getting a check-up yearly.

If cancer is a mystery, then ways in which radiation erodes function is a 1,000 piece Escher jigsaw puzzle. Putting together the pieces is time consuming and laborious. The resulting image is not always what it appears to be – years after exposure, nerve cells wither and die, damaging function in unexpected ways. There is a steep learning curve after a cancer diagnosis – patients and their families work to make sense of aberrant cell function, specialists they never knew existed, unpronounceable drug therapies, how to find parking for daily radiation treatments, and so much more. Doctors spend years, even decades, honing skills to treat a particular type of cancer. Within weeks, patients go from finding a lump to sitting bald and nauseous in a chemo chair.

Cornucopia Cancer Support Center helps patients make sense of the wreckage left during and after cancer. It is tempting to focus on Dave’s posture, voice, and scars. Radiation after-effects are clearly the demon in his story. However, Dave is in no way defined by his cancer. He says that Cornucopia’s services are critical for people who are afraid. He learned that sitting with others who have similar problems brings contentment, a sense of safety and reassurance. He says, “The rest of me is great.” Unable to change past decisions, he lives a full life, despite the radiation damage. He uses a special microphone and speaker to talk, he participates in physical therapy to strengthen the muscles that still work, he plays tennis and golf with friends and family, he bravely goes out into the world to connect with other survivors and share his story. Through Cornucopia, through Dave, other cancer survivors learn to pause and ask more questions. “What is the worst that could happen” is a scary question. Dave learned the answer the hard way. Although his voice is a whisper, his story is a brave command to listen, to ask, to share.

Written by: Sara Sousa
November 2014