Dec 10, 2018

Our cancer journey has been a shared experience. One person receives the cancer diagnosis but the caretaker also lives with the fear, the despair, the hope and the faith that if you have the best available medical care, you choose the right attitude and you have faith that God will guide you in your path, together you can overcome the odds. My husband, John, received the shattering news eight weeks after in situ surgery to remove a malignant tumor on his scalp that his cancer had metastasized into stage IV melanoma. We always said that “we had cancer” because we were both living with it.

During the first chapter of our journey, we naively thought John simply needed to recover from the surgery and we would be given a reprieve. We later called the 8- weeks post-surgery our honeymoon period. From the beginning, we had been informed that there was a 50/50 chance that the cancer had metastasized but we simply did not believe it. John felt good and we had so much that we wanted to do together.

Our lives were happy and blessed. John was still working full time but he was within a year of retirement. We had celebrated 36 happy years together. We had three adult children, two of whom were married, and two grandchildren. Time spent with our family and making memories with them were very important to us. We enjoyed traveling together and with the whole family, as often as we could.

The circle of our cancer life began with the addition of a new family member. The day that our third grandchild was born we learned that John’s cancer had metastasized. From the start of our married life, we never took a day for granted. The recurring theme of our life together had been and continued to be: “Every day is a gift.” Certainly, some gifts are better than others, but all are to be treasured because each day is precious.

John was an eternal optimist but always a realist. He truly felt that things happen for a purpose and that we have to make sense of our lives by how we embrace life’s challenges. He would find a new purpose in his life by being given a terminal cancer diagnosis. Always the teacher at heart, he wanted to show others that life was worth living even if you were living under a cloud.

When John asked our oncologist directly about his prognosis, the doctor was reluctant to give him a timeline. John wanted to know because he was a planner. He wanted to make the most of whatever time the doctors thought he might have. The doctor reluctantly answered that the average rate of survival at the time was probably six months to a year. John took that as a challenge that he would exceed the averages and he did. He truly lived, worked and loved life fully for five years.

In those five years, he agreed that he would do whatever it would take to survive. However, he wanted quality time not just quantity. And quality time he got but not without some very scary periods. When he first told his staff of his illness, he referred to the cancer journey as a scary, dark amusement park ride with many twists and turns, ups and downs.

To help me focus during the doctor’s office visits, I always had a notebook with me. I would write down what was being said. This helped me to listen and to be able to ask questions as treatments and prescriptions were changed to accommodate the side effects of the treatments. There were extreme highs and lows every time we had to change course. John used to say to our oncologist that as long as he had options to offer us, he was optimistic that he would find the right “cocktail” to stem the growth of his unique cancer.

There were so many people who were supporting us on this journey that I used my notes to create updates on John’s progress through emails. Every time he had results from a scan or a change of treatment plan, I would send out a message. I found this to be a cathartic exercise for me. Moreover, it was too emotionally draining to repeat the story again and again. The responses that we received from these emails became our biggest source of support and love throughout our cancer journey. It gave so many people, including former students and colleagues, a chance to connect with us, many who may not have taken the time under different circumstances. We felt that the cancer diagnosis had brought the gift of renewed friendships and contact with people whom we had crossed paths with during our lives.

Initially John started with Interferon treatments. After only two weeks of treatment, we knew that his cancer was not under control. It was at this point that scans confirmed that the cancer had metastasized. He then had two weeks of radiation. Both of these treatments left John with flu-like symptoms of general malaise and fatigue. We are fortunate to live only 24 miles from Boston. Many people offered to help with driving to and from appointments. I knew from the beginning that we would not get the long retirement that we had planned. These trips to and from the hospital and the time we spent together treating John’s illness were going to become a part of our retirement; unplanned, unwanted but nevertheless, precious time. A cancer diagnosis minimizes some of the choices you would like to make. We considered the diagnosis a blessing that allowed us to make the most of the time we could share, with the people whom we love and the memories we wanted to create.

Following two weeks of radiation, John was given the option of a clinical trial or Interleukon II. We opted for the clinical trial that gave John three good months of quality time at work and at home. It also coincided with Christmas and a very busy time of year preparing the annual school budget. John believed that God had worked out the timing perfectly so that he could accomplish what he wanted to do and still receive treatments. Unfortunately, the results were not as good as we had hoped and some of his sites had grown.

We switched gears and John agreed to undergo Interleukon II treatments. The first week of treatments was extraordinarily draining both physically and emotionally for John and also for me. Interleukon II is given over a three-week period of time. One week in the hospital, one week at home and then a return week’s stay in the hospital.

In retrospect, one of the hardest chapters in our journey was the time between the Interleukon II treatments. When John arrived home after the first week, he said he would not go back. I asked him to give it a few days before he finalized his decision. I knew the time would come when he simply could not subject himself to treatment or that his body would not be able to fight any longer. But I really wanted him to try to do this. The second week of treatments was scheduled right around Valentine’s Day. He finally agreed to go but he told our son that this was his Valentine to me, he was not undergoing this treatment for himself, he was doing it for me. The return trip for the second round of treatments was one of the most difficult trips I ever made with him. The good news was that his side effects were not as severe during the second week of treatment and the results of the scans were very promising.

John was very involved in introducing a global exchange program with schools in China. He had made one trip with other educators and wanted to make a return trip with adults from the community to expose them to what a global education could provide students. He had made all of the arrangements and planned to lead the group of 74. After the Interleukon treatment, John had returned to work on a limited schedule. Three weeks before the planned trip to China, he could not climb the stairs to his office. But three weeks later, John climbed the Great Wall of China and mounted one of his most defiant acts of sheer will and determination to achieve his goal of living life fully.

John officially retired from public education that spring. During the summer he started another round of Interleukon II and a new job as the president of the school he had graduated from. Giving service back to this school had been one of his life long goals. Unfortunately, the results were not as good this time from the Interleukon.

Although he was working full time, he wanted to fit in as much travel as we possibly could. We were on an accelerated retirement plan. He had always promised me a trip to Greece for our honeymoon. When we had married 37 years before, we did not have the finances to go to Greece. Right after we were married, he brought me to the play, “Grease” in Boston. After the second round of Interleukon II hospitalizations, John kept his promise and we had a wonderful trip to Greece. Every day is a gift and nothing is taken for granted.

When we left for our trip to Greece, we had been told that we had two possible options: one was a targeted cell therapy treatment that required a biopsy to determine eligibility and the other was a 2-month stay at the National Cancer Institute in Bethesda, Maryland for an adaptive cell therapy treatment plus yet another round of Interleukon II. A grueling option but one that showed some promise for more quality time.

When we returned from our trip, we learned that John did not qualify for the targeted cell therapy treatment but a promising new immunotherapy clinical trial, MDX 1106, had opened up and John was a strong candidate. He got the last slot open and a brand new fantastic chapter in our cancer journey began.

Our oncologist explained that provided shrinkage or stabilized results were achieved, participation in this trial could last up to three years. This was music to our ears. No one had been talking beyond scans every 8 weeks. John could not wait to sign up and get started. It took six months before we started to see dramatic results in the scans. Waiting for results was torturous but the bonus was that John did not suffer any major side effects from this treatment. For two and one half years, John received treatments intravenously every other week at the Yawkey Center at Mass General.

The quality of our life during this time was phenomenal. John worked full time and every chance we got we traveled together and with our family. Scheduling trips was difficult because they could not exceed 12 days due to clinical trial restrictions. There were many times that John received a treatment and we left directly from the hospital for the airport. We went to Yellowstone National Park, the Grand Canadian Rockies, a trip to the Amalfi Coast and a Baltic Cruise. There were some occasions where we had to slow down our pace but we felt that whatever we were able to do on any given day was a gift. We created wonderful memories together. We lived with and for the hope of one more adventure together.

We have three adult children, two of whom were married prior to John’s diagnosis. One of John’s biggest dreams was to walk our younger daughter down the aisle on her wedding day and to dance with her to “Somewhere Over the Rainbow.” Our daughter’s wedding was a huge milestone while living with cancer; one of the many happy days that we shared together with family and friends. The circle of life continued for us as another grandchild was born during the course of John’s treatments. Individually, each milestone brings its own special joy. Collectively, we celebrated life together with our children and their children by making the time to spend precious time together on family visits and trips. In the end, we achieved a high degree of quality time and the circle of life continued.

John participated in this clinical trial for 2 ½ years with amazing results. Our extraordinarily compassionate oncologist shared in our joys and disappointments of John’s response to different treatments. He understood that he was treating a person and a family not just a disease or a number in a study. He told us that John’s success in stabilizing and shrinking his cancer tumors with this clinical trial was a high point in his career. John was proud to be able to contribute to the research that might one day lead to a cure. We knew that we had been granted an extraordinary extension of quality time. However, MDX1106 had run its course and the time came when it was no longer effective in stabilizing John’s cancer.

He started having evidence of new growth and new melanoma sites, one of which was in his tonsil. He had to have the tonsil removed. We viewed this as good news because we knew they would not have subjected him to the surgery if it wouldn’t improve his chances of survival. He had the surgery while he was also undergoing Ipilimumab or Yervoy treatments. We had planned a trip to Hawaii to celebrate our 40th wedding anniversary. I really felt the trip would be too taxing for John. I told him he had played his cancer card one time too many. But he was determined to go and we enjoyed ourselves.

Finally, the Yervoy treatments started to get the best of John and he ended up with emergency surgery for a perforated bowel. Anemia started to become a chronic problem. After a series of setbacks over several months, it was finally decided that John needed hospice involvement. Throughout the five years, we had been very honest with our children about what was going on. The teacher in John wanted to demonstrate that you live life fully, love with all your heart and you leave this life with no regrets. Towards the end, he wanted our grandchildren to know that he was sick and could not get better. He explained that all living things die one day but love lives on. Cancer cannot take that away from us. This is the circle of life.

One of John’s hopes was to live to see our younger daughter’s first child born. John’s cancer journey started with the birth of our third grandchild and it ended with the birth of our fifth. The baby was born five weeks before he died. And so goes our circle of life. My daughter and her husband are now expecting our 6th grandchild this summer, which will be two months after the first anniversary of John’s death.

John was a registered organ donor. When John died, I asked the doctor if there were any chance his organs could be used. I was disappointed when he said no. Later, as my son and I were driving home from the hospital, I received a call from the New England Organ Bank telling us that if I would agree to provide a medical history, John’s corneas could possibly be used. I was overjoyed to think that John, who was such a visionary, would be able to give two people the chance to see. This would be the final gift of John’s legacy.

We continue to celebrate John’s life through the people whose lives he touched and the many happy memories we shared. Those who mourn the loss of his physical presence keep our eyes, ears and hearts open to signs of his continued presence in our lives. Life is forever changed but we are so much richer for having shared it with him. In all of this, I still strongly believe that we were given the gift of cancer so that we would not lose sight of how precious our time is and to make the most of each day, whatever it brings. The lyrics of the song, “The Circle of Life” from “The Lion King” capture it best:

It’s the Circle of Life
And it moves us all
Through despair and hope, through faith and love
Till we find our place
On the path unwinding in the circle
The Circle of Life.

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