I am 45 years old and consider myself a regular, middle-class, hard-working, blue-collar shirt kind of guy. I am married and have three great teenagers: Kara, Rachel, and Brendan. I have two mortgages and after 16 years with the same company, I still work too much. My mindset is a bit unsettled, but I feel tremendous physically, the same way I did about three years ago when my life collided with cancer. Since 2004, I have experienced every emotion and feeling that goes with the pain and anguish of disease and mortality.
Discovery & Diagnosis
On a sunny September morning in 2004, I had just returned home from a workout at the gym after completing my night shift at the U.S. Postal Processing center when I received a phone call from a dermatologist informing me that I had a malignant melanoma on the left cheek of my face. The news was shocking. The week before this same doctor, during my second visit to him, had repeated that the mole-like mark was a keratoses. He even told me its removal was cosmetic and my insurance probably would not cover the cost. At that time, he also diagnosed a similar mark on the back of my left upper arm as keratoses. So now, this news straight out of left field knocked the wind out of me. I became distraught and I could barely speak. I paced the house frantically. I called the doctors’ office back again and again. My world had stopped on a dime. I was angry and fearful. I was also determined. And so the journey began.
I was referred to a surgeon at the UMASS Medical Center in Worcester. I also met with a new Dermatologist. He performed a biopsy on the mole on my left arm. The results were positive for melanoma.
Less than three weeks later, which seemed like an eternity, I had surgery. In the meantime, my world was dark. I was shocked, hurt, and confused. I could only think about the worst. My kids were 15, 14, and 12. I struggled to tell my family and a few close friends about the diagnosis. It was incredibly difficult to break the news to my parents.
Due to its thickness the melanoma on my face was considered Stage Two. The surgeon was affable and bright. He had trained at MD Anderson, a renowned cancer hospital in Houston. I was comfortable with his manner. A sentinel lymph node biopsy was done on my face. The melanoma on my arm was thin and considered Stage One. The surgery lasted four hours and both melanomas were removed with the standard wide excisions. I was kept overnight but was discharged early the next morning. During the night, Red Sox designated hitter David Ortiz had hit a walk-off homerun to eliminate the Angels in first round of the playoffs. Magic was brewing for the Boston nine.
Eight lymph nodes were sampled during the surgery. They were then sent to the pathology lab for study. The results took almost a week, another eternity. My prayers were finally answered with a phone call from the surgeon. I had seemingly dodged the freight train. The melanoma had not spread to the lymph nodes. The eight nodes which were sampled were clean. It was quite a scare and I was left with quite a scar, but all was good. I healed, and within a couple of weeks I returned to work. I now had a different perspective. I was relieved, thankful, and a bit wiser.
I made the regular follow-up visits with the surgeon every couple months. I also continued to see my new dermatologist for quarterly checkups. No news continued to be good news. I worked a little less and with a different outlook on life, enjoyed life a little more. In April 2005, I even took the family on a fun whirlwind dream tour of the west, visiting Bryce Canyon, Zion Canyon, the Grand Canyon, Hoover Dam, and Las Vegas. A few months later, I traded in the old family van for a truck I actually liked. It was all small in the scheme of things, but I was happy.
It was never gone
Then, in mid-July, I felt a lump underneath my left ear, an inch or two from where the melanoma was removed. I told myself it must be a cyst. I had had a half dozen of those removed over the years. Yeah, that must be it. However, I knew better. I just couldn’t say it out loud.
In early June, my surgeon had relocated to Philadelphia, so I scheduled an appointment with my family doctor of 17 years. When we met, he knew, instantly, the seriousness of the situation. Less than 48 hours later, I was at UMASS for a biopsy. Not much was said then, but I sensed my life again was headed down a very dark road. I received the official word within a few days. I was now Stage Three. I was crushed. I literally felt it coming, but you can never be prepared.
My wife, sisters, and brother rallied around me again. Caring and compassionate describe my warm-hearted wife Rosemary. She is a devoted mother and a pillar of strength. It’s quite comforting to know our children will always be loved and cared for. I am the youngest of a close family with a very deep faith. My beautiful sisters Susan and Sharon are true angels. Their love and affection lifted the spirits of me and my family. Susan, tremendously insightful, has guided me towards peace and serenity. Sharon, with her passionate attitude and positive wisdom, energized my willpower. She made me promise to never ever give up. Brother John, with the heart of a lion, bolstered my confidence with his encouragement.
I was referred to a new surgeon at UMass. Our first meeting lasted well over an hour. He described Melanoma as a nasty cancer. He repeated that mantra again and again. As if I didn’t know it. He struck me the wrong way. Maybe he was overworked or was having a bad day, but he never acknowledged my wife and he had a hard time looking me in the eye. That was the last time I saw him.
Thinking about the sentinel lymph node biopsy ten months earlier, I asked my family doctor, how did this happen. Microscopic metastasis was the answer. I learned a few months later that in about one in 50 cases this occurs. Ouch!! I had gone from being a long shot to have a problem to being a long shot to find a solution.
I proceeded to contact the Dana-Farber Cancer Institute. Within two weeks, carrying all my records, x-rays, slides, and PET scan, I was in Boston to meet my new surgeon. The doctor was personable and professional. I liked her immediately. She informed me about the procedure I needed. It was called a radical neck dissection. Muscle, cancerous tissue, and lymph nodes would be removed. Nerves would be delicately shifted. Any wrong move would have drastic consequences. I really had no choice. Just get the cancer out of me I thought. Without hesitation, I signed the authorization. The doctor answered my questions. She explained to my wife and me how harsh and brutal melanoma was. She informed us that if the melanoma returned after surgery, it would likely recur in the liver or brain. I asked about the survival rate and she gave me the hard to hear numbers. She told me strong young men like me die from this disease. I finished the trip wearing what the technician called a hockey mask for an MRI on my head. Utter sadness swept over me. I was dazed, worried, and distraught and I realized that I had not dodged that speeding freight train.
I can do all things through Christ who strengthens me
On September 6th, I checked in to Brigham and Women’s Hospital in Boston for surgery. The operation started on schedule and lasted 11 hours. My wife Rosemary and my sister Sharon met with the surgeon afterwards. Sharon described the surgeon as self-assured and secure. A good sign I thought. The morning after I found out Sox slugger David Ortiz had cracked another walk-off homerun. Go Sox. I spent the next five days in the hospital. I experienced pain, excruciating at times. My neck had more staples than an office supply store, but I walked out carrying my own bags. I took a hit, but I was still moving.
In mid-September, I met with an oncologist at Dana-Farber. He reviewed the results of my surgery and detailed my future options or alternatives. He told me about clinical drug trials. He spoke about the history of melanoma drugs. He told me about radiation therapy and interferon. He talked about Sloan-Kettering, a hospital in New York City where he had worked. He mentioned doctors in North Carolina and Pittsburgh. I had survived grad school, but all this information quickly became overwhelming. My head was spinning. For some reason, I had expected a clear path of treatment would be laid out for me. Instead, I was told of options and it was up to me to decide which ones to choose.
The Oncologist told me that over 40 lymph nodes had been removed from my neck during surgery and three of the nodes were cancerous. He also declared that the Melanoma would return. How do you know, I asked. Due to the lymph node involvement, he said. This reply was unimaginable. The extensive surgery and all the drugs yet to be taken, and now my hopes were being shattered. I was upset and bemused. I was lost. I was unraveled. Tearful moments became too common.
I was confused and despondent for days after the devastating oncologist consultations. I like to think of myself as an optimist, but now my hope was destroyed. I staggered to be positive. I continued to recover physically from the surgery. Lost in the dark forest of despair, I managed to contact Sloan-Kettering and the University of Pittsburgh Medical Center. Sloan-Kettering didn’t have any suitable trials. Call back in mid-November when a new trial may be starting I was told. I was able to make an appointment to see Doctor Kirkwood in Pittsburgh in early December. The day I made that appointment he appeared on Nightline to talk about progress made with a Stage Four medication. That could be a good sign, I thought.
Fortunately, I returned to work in early October. My friends and colleagues were extremely caring, kind, considerate, and accommodating of my situation. Simple words can never describe my appreciation. Many of them had shared my pain for a while. They had sent numerous cards and heartfelt wishes. The calls and visits meant so much to me. The kindness, generosity, thoughts and prayers, sustained me during my toughest times. Their compassion will never be forgotten. Their support strengthened and carried me.
I also received encouragement in early October when I met with my dermatologist. I had cancelled my August appointment, so he was unaware of the latest turn. He calmly listened to my painful story. He told me about patients he has had who survived similar situations. Like a good doctor, he made me feel better.
I started radiation therapy in late October. According to the Radiation oncologist at Dana-Farber, I would require 23 treatments. The first week of treatments went fairly well. Towards the end of the second week, the side effects began to hit hard. The fatigue was incredible. That was tolerable compared to what was happening to my mouth. Drinking and eating became more difficult by the day since swallowing and taste were being destroyed. Drugs only helped so much. It took all my willpower just to get a couple of ounces of water down. I did my best to maybe eat some yogurt or some of the scrambled eggs made by my daughter Rachel. My resolve lessened severely after about 15 treatments. Everything was difficult. For weeks, I slept in a chair next to a humidifier. I was on some sort of auto-pilot for the last week and a half of radiation. I was unable to work even part-time. I dropped close to 25lbs. over the course of treatments and I had never ever felt worse.
The 100 mile roundtrip commute from my home in Paxton to Boston got old fast. Thankfully, I had my brother John and dear friends including Chicky, Katie, and Sue accompany me on the rides. John drove me to my last treatment at 7:30AM, on a Wednesday, the week before Thanksgiving. I will always cherish the moment when we got off the elevator and were greeted by Sue and Chicky who had made the trip to Boston to be with me for my last treatment.
All the darkness in the world can not extinguish the light of a single candle –St. Francis of Assisi.
It was time to recover again. On a follow-up check with my assigned Radiation nurse, she wanted to make an appointment for me with an oncologist. I told her I couldn’t and wouldn’t meet with the oncologist I had met in September. He had already wiped me out. With little explanation, the nurse understood. I was scheduled to see a new oncologist at Dana-Farber on December 5.
The generosity and kindness of friends continued to sustain me. Unbeknownst to me, a raffle was organized at my workplace. The event, complete with dozens of prizes ranging from Patriots club seats to books of lottery scratch tickets to celebrity autographs to gift certificates and golf clubs, was spearheaded by my fabulous friend Mike and a gallant group of people. I was caught completely off guard. On top of the hundreds of dollars, and hundreds of hours of vacation time, that had already been donated my way, I was now the recipient of thousands more. I was told the funds would pave my road to recovery. They certainly did. I was and still am filled with gratitude. I was touched. This cancer had allowed me see the depth and experience the love of those around me. These precious friends mean so much to me. They had strengthened my will. I hope to honor that every day for the rest of my life.
My hometown of Paxton was equally generous. Dinners were delivered by thoughtful neighbors, boy scouts raked away tons of leaves, and generous donations came from the town hall, the police station and the church. Instead of being overwhelmed with bad news, Rosemary and I were overwhelmed with gratefulness. Our community could not have been more supportive.
Refreshed and recharged the cancer fight continued into December. I met with Dana-Farber oncologist Dr. Hodi. He seemed to hold out more hope. He did not downplay the severity of my illness, but he did remind me that I had accomplished a lot. The surgery was by far the best action I could have taken, he said. He informed me that the cancer had a greater than 50 percent chance of returning and then he left it at that. He gave me his opinion regarding the interferon drug treatment. Although, he has many patients on it, he is not an advocate. I was told that it only helps a small percentage of the people who take it and that data is inconclusive.
I traveled to Pittsburgh two days later. There I consulted with another Melanoma expert, a strong proponent of interferon. This dedicated doctor was thoughtful and hopeful. He explained the potential benefits of the drug treatment. A memorable moment of this trip came from a chance meeting with a volunteer at a home for long-term patients located between the hospital and the hotel. She asked my wife and I where we were from. Dressed in our winter hats and scarves we informed her that we were from Massachusetts. Oh, you have Melanoma, she said, unable to see my scar-laced neck. You must be here to see Dr. Kirkwood. People come from all over the world to see him.
Less than two weeks later, at the insistence of my parents, I contacted the oncologist in Worcester who had been treating my Mom for years. He conferred with my new Boston oncologist and I decided that I would begin high-dose interferon in his office on January 3rd. I had learned about the long and grueling course of the drug treatment, but I had determined that I wanted to do everything and I mean everything possible to battle cancer.
Life is not a matter of holding good cards but of playing a poor hand well. –Robert Louis Stevenson
I found solace in prayer. Throughout the odyssey I continually prayed for strength. At the Christmas Eve mass, my pastor spoke about the angels telling the shepherds to spread the word of Jesus. Do not be afraid, the Angels said. I took this as a message for me. I would not be afraid. I would persevere.
The first course of interferon comes intravenously and takes approximately two hours per day, five days a week, for four weeks. The first few days were brutal. Chills, joint-pain, and fatigue swept through my body. I almost didn’t return after the first day. I admitted this to a nurse and she told me many people don’t. The office was only eight miles from my home, but I couldn’t drive home quick enough to jump under the covers to ride out the effects. The aches became more tolerable after the first week. Mid-way through week three, I returned to work part-time. This actually helped my mindset. I was sleeping close to 12 hours a day, but I was able to settle into some kind of routine.
The mental challenge of cancer treatment has and continues to be a giant hurdle. Facing 48 weeks of interferon injections five days a week can seem daunting. Focusing on the day and not looking too far ahead continued to be the goal. Typically, I slept to noon, showered, ate, injected, and then went off to work for five or six hours. Then I returned home for some quiet time with my wife and kids before bed. On the weekends, I rested and savored the simple, enjoying a movie with Brendan or watching Kara swim.
In addition to the aches and pains, I had no appetite and sense of taste, the radiation had long ago taken that away. My oncologist at Dana-Farber warned me that if my weight dropped further, he would take me off the interferon. He instructed me to become good friends with Ben & Jerry. With great effort I managed to stay above 180, about 35lbs below my pre-surgery weight.
Eventually the days turned into weeks, but when I thought about my future or the arduous undertaking of this drug treatment I became upset. Especially early on, I often pulled to the side of the road to regain my composure. The emotional upheaval of cancer is tremendous. Every previous notion has to be contemplated. On the plus side, the new pace of my life has allowed me plenty of time to reflect on the considerable change.
Irish eyes are smiling
I was fortunate that my body tolerated the treatment. I have met others who suffered more. Due to the thoughtfulness of the people of the Postal Service which accommodated my schedule, I was able to make a living. I have heard that some patients have had to take the year off. The results from the periodic CT scans continued to be clear.
All is looking well. On January 19, 2007, I gave myself my last shot. I would have finished sooner except for a glitch in the delivery of the drugs.
This year has been a time for healing. I have spent numerous hours exercising, rebuilding my body to get the spring back in my step. Improving my state of mind is equally vital. I understand that living with a life threatening illness puts everything in perspective in a way nothing else can. I have read the books where the title says it all, No Such Thing as A Bad Day, Making Peace with Cancer, and Every Second Counts. I attend the Melanoma Foundation’s monthly Worcester support group meetings which I find helpful and their bi-annual symposiums at Dana Farber Cancer Institute which are informative. It all makes complete sense now. I know I’m on a new path. I have been inspired by the courage of other melanoma survivors. Every event and encounter has taken on more intensity. That realization is a blessing. This is the prize for surviving and being a Cancer Fighter. I have hopes and dreams and I will live with determination and passion.
Cancer does indeed take away some of your independence. You become reliant on family and friends. I have been surrounded by many wonderful people to steady my ship. One standout person is Mary Ellen, a cancer survivor herself. She’s a co-worker who volunteers countless hours as an area coordinator for the American Cancer Society. She was there when I shared my dark news with my crumbling voice back in 2004. She brought me to radiation. She sat with me during intravenous treatments. She listened and she guided. She is a true friend. Loyal supporters also include Kevin, Pete, Ed, Bob, and Tony to name just a few.
Three weeks ago, we celebrated my second Cancer Free Anniversary. Sue brought cake. The frosting read ‘Twice as Nice.’ It was tremendous. My hope has been resurrected. Hope arouses the passion for the possible. My house may have burned, but I can see the sky. I am blessed and I believe.