From Doctor to Patient and Back

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By Pam D’Agostino

Dr. Robert D’Agostino has been a practicing family physician in the town of Canton since 1979. He agreed to share his cancer journey, through the perspective of his wife, because he has cared for innumerable patients with cancer. He wants those who have had the disease, and those who may receive those sobering words, “You have cancer,” to know that there is hope. This experience has deepened his commitment to caring for his patients, who cared for him during this very difficult past year.

Dr. D'Agostino in his Revere Street office

Dr. D’Agostino in his Revere Street office

Looking back I suppose I should have known. All the signs were there — bleeding, discomfort, strictures. But when you hear those words, “I have cancer,” coming from a loved one, you are never prepared. Before this revelation from my husband of 38 years on July 3, 2013, the motto in our family had always been, “Well, at least it’s not cancer.” But now that cancer had moved into our home, we knew many things would have to change.

In a sense it was like déjà vu for me. My husband had developed ulcerative colitis at the end of his medical residency in 1979, when we were living in Indianapolis. Ulcerative colitis is an autoimmune disease that attacks the mucosal lining of the large intestine. It is considered to be a pre-cancerous condition, so when my husband’s condition did not improve after several years of failed drug therapy, the only option left was surgery.

In some respects we were relieved. Surgery meant freedom from the pain, discomfort, and confinement that the disease had imposed upon our lives. But it was major surgery and there were innumerable risks. Ultimately, my husband, by then a practicing physician himself, elected to have a new procedure called the J-Parks. It was named after an English surgeon who had instructed doctors at Lahey Clinic. This involved removing the large intestine and then forming a “J” out of the bottom section of the small intestine. This “J-pouch” acts as an internal reservoir and allows the patient to have near-normal digestive function without the use of an external bag.

My husband had the surgery at the beginning of March in 1983, and from almost the moment he came down from the recovery room, moaning in pain and attached to so many tubes, wires and monitors I couldn’t even begin to count them all, he was in a fight for his life. Over the next six months, Rob endured three surgeries instead of the customary two to perform the operation. He was out of work so long that he almost lost his practice. At that time I was teaching in Franklin, and every day I would leave work and drive to Burlington. One day I came in to his room to find him on his back in the bed looking pale and worn. There were IVs in both of his arms — which was highly unusual. His doctor was leaning again the wall near his bed, with his eyes closed and his arms crossed in front of his chest. When I entered, he opened his eyes, looked at me strangely and said, “We almost lost him today. He has peritonitis.”

Remarkably, he recovered. For the next 30 years, as we started our family and led our lives, the “pouch” functioned more or less as it was designed to. There were innumerable bouts of infection that required large doses of antibiotics, and there were the usual complaints of frequency often mentioned by others who had had this surgery. Then, in the spring of last year, Rob noticed he was anemic. But his blood count responded well to iron supplements. Then there were strictures and lots of discomfort. Three endoscopies were required before the cancer was finally found hiding in the lowest corner of the pouch. The pouch was diseased and had to go.

When you are battling a giant you want the best and the brightest on your side, so we did not hesitate to call Dana-Farber. We were immediately impressed with the efficiency, expertise, and level of care that we received and continue to receive. From the first appointment, Rob met with a team of doctors: the medical oncologist, the surgical oncologist, and the radiation oncologist. It was decided at one of the first sessions that they would do the surgery first, which is a departure from usual medical protocol, but the surgeon felt he was too symptomatic not to.

There was no vacation during that summer. July was filled with appointments and August was spent waiting for the phone call. As a teacher, I hoped the surgery would happen as far from the start of school as possible. Instead, it was scheduled for August 27. On that morning we woke at 4:30 a.m. We drove in to Dana-Farber using the route our good friend Jimmy had shown me weeks before in preparation for this day and the many, many days to follow. We arrived in time for our 6 a.m. check-in appointment, and then were ushered downstairs to begin surgical preparations.

Part of the reason it had taken so long to schedule Rob’s surgery was because they needed a whole team to perform it. As Rob reclined in his hospital bed and I sat by his side, medical specialty after medical specialty filed in to introduce themselves, ask the necessary questions, and to reassure us both.

The surgery was estimated to take six to eight hours. I never left the hospital. Dana-Farber has a marvelous family waiting room where I quickly claimed a little nook and camped out for the day. I read, snoozed, and was bolstered by my friend Millie’s frequent phone calls to say she was thinking of us. By hour nine, two of my children had come. By hour 10 we were all getting antsy and asked for information from the receptionist. “The surgery is ongoing,” came the reply. By hour 11 we were climbing the walls. Finally, after 11 and a half hours of surgery, we heard that the surgeon would be down to see us shortly.

Dr. Sarah Russell is petite and personable. She looked both very tidy and very tired in her scrubs. She sat on a stool beside my children and I and spoke candidly and animatedly about the surgery. I asked if he was going to be placed in ICU. “Heavens no,” she replied. “He doesn’t need that!” I remember thinking that maybe I did, but I was so relieved that I simply shook her hand and said, “Thank you and bless you, doctor.”

Later, around 10 p.m. that evening, we were allowed to see Rob briefly in the recovery room. Rob was lucid but knew he wouldn’t remember the visit the next day. That didn’t stop my son from making his usual wisecracks. “Hey Dad, all that surgery and you’re still ugly!” We all laughed.

The estimated time for hospitalization following a pouch reversal surgery is five to seven days. Rob was in the hospital for 22 days due to complications with his small intestine, always a highly unpredictable organ. He was in extreme pain for many days, and there were almost as many tubes and wires as the first time, 30 years ago. Now, as then, Rob was asked to get up and walk as much as possible. And here is probably where the intersection between being a doctor and being a patient becomes the most agonizing. Intellectually, you know what should be happening, you know what the patient needs to do, but as that patient you are in pain and miserable. But walk he did, very slowly, with one of us always by his side, clutching his IV pole, first just to the door and back, then around the pod of rooms.

The D’Agostino family is all smiles on a recent vacation: (l-r) Dara, Pam, Juli, Joe, Bob and Alexa.

The D’Agostino family is all smiles on a recent vacation: (l-r) Dara, Pam, Juli, Joe, Bob and Alexa.

Eventually his small intestine woke up and he was released. Thin, because he had not eaten in a month, weak from being in bed, sore from having his insides rearranged, and uncomfortable from being an inpatient and with getting used to the external bag, he was at least happy to be home.

Before arriving home he had learned that the pathology reports had shown that he had one positive node out of 25. That meant he would have to endure chemotherapy, not just radiation. The chemo started in late October. Unfortunately, the side effects were so severe (including a blood clot in the leg, loss of appetite, hand swelling, and severe dehydration) that it had to be discontinued in early January. When discussing this with his medical oncologist, Dr. Schrag, we learned that there were only 27 cases in the world like Rob’s. In other words, of all the thousands of people who had had the J-Parks procedure, only 27 had developed cancer. He was a subset of a subset in medical and analytical terms, and their best protocol was formulated on educated guesswork.

After a month off to counter the toxic effects of the chemo, radiation started in February. Day after day, while trying to see patients and run his busy practice as best as he could, he drove into Boston for the treatments.

On the last day of radiation, March 24, Rob received word that his father had been admitted to the hospital in Hartford, Connecticut. As an ornery, independent 86-year-old widower, his dad had always refused our offers to have him come and live with us, or closer to us. Now he was experiencing serious health issues. Again donning his proverbial “doctor’s hat,” Rob spent hours talking with his father’s doctors and surgeons until, about a week later, he realized that he needed to bring him to Boston. Using his contacts and calling in favors, Rob brought his father to Dana-Farber because it had been discovered that among his many problems, his father had a cancerous bowel tumor. But despite our best efforts and those of his doctors, Bernardino D’Agostino passed away on April 25.

It was a crushing blow for Rob and for our children, because it was their last grandparent. It seemed almost surreally unfair to have had to deal with cancer and the death of a parent in such a short time span, yet we always knew that many people experience this and much worse. We were thankful that Rob’s dad didn’t have to suffer any longer than he did.

In May and June we tried to return to some semblance of normal. Rob’s major concerns had always been his patients, and he tried to be as available as he had once been. He had been back to work since January, first part-time, then full, often returning home depleted and exhausted.

In July he had his first scan and it was completely clear. That was cause for much celebration! In August, we flew down to Ft. Myers, where we have often enjoyed vacationing. While there, Rob began experiencing problems with his left leg, the same one he had had a blood clot in during his round of chemo. Upon our return, the suspicion was confirmed. This was a devastating blow for Rob as he had been working with a trainer to ready himself to play soccer in an over-60 league — a passion of his which he has followed since his 30s. Now, with the clot and the mandatory anticoagulants, he would not be able to do any kind of contact sport for another six months.

Throughout this ordeal my husband has remained my hero. He never complains — sometimes he gets cranky, but he never complains. He is always thinking, understanding the protocols, and remembering to tell his doctors when he uncovers some little bit of information that might help the next sufferer. His mind is as sharp as ever, and he remembers every person’s name that worked on his case, their title, their job, and how they helped him. He is grateful and gracious to all his patients who patiently waited for his return, sent cards and words or encouragement, brought meals, chicken soup, and other delightful edibles! He is appreciative of every little, and some very large, acts of kindness from his staff, his friends, and from the community.

No matter how bleak things looked during the past year, we never discussed death. It was simply never an option. I knew that this man, this quiet, unassuming man with the steel-trap mind, still has much to give the world. His patients count on him, his children count on him, and I count on him. And he did not disappoint us — he survived.

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