The Small “c”

          Jerry’s oncologist turns away from his computer to look at us. “When did you say you went into remission?”

          It is May 28, 2014.  My husband Jerry and I are on a routine trip to the Durham, North Carolina, VA for his regular oncology checkup. We now go every six months, instead of every three months, because Jerry is doing so well. He has non-Hodgkin’s lymphoma, sub-type mantle cell, originally diagnosed in the fall of 2005. His oncologist is on a postdoctoral fellowship through Duke University Hospital, which is right across the street from the VA. He is very personable and a good listener. Right now he has a small smile on his face.

          Jerry answers his question, “2009, April. I got a bone marrow biopsy to confirm it.”

          The oncologist nods, looking at his computer monitor, and turns back again. “That’s what I thought. That’s five years; do you know what that means?”

          We knew that with some other cancers you were considered cured if it did not recur within five years. “Not cured,” says Jerry. With lymphoma, they didn’t use the word.

          “We don’t say cured, but the truth is, after five years your chance of recurrence drops way, way down. You don’t need to have regular checkups anymore.”

          “But I will still have CT scans.”

          “No CT scans, no checkups. We don’t need to see you again unless you develop symptoms.”

          Jerry and I looked at each other. “Wow,” I said.

          For eight and a half years we have been trekking back and forth to the VA for treatment and checkups, first in Martinsburg, West Virginia, and now in Durham.

We left the hospital and made our way over the long covered walkway to the parking garage, thinking about it. Released! I had this amazing feeling of lightness, like I was floating over the ground. I had recently been talking to another lymphoma survivor, who said he no longer went for checkups. “I can’t wait for that day,” I had said. But this was unexpected! Since no one used the “c” word, for “cure”, I guess we thought we’d just go on trekking indefinitely, because Jerry’s lymphoma was sure to recur.

          I thought about all the visits to the VA. We have only been in North Carolina for a year and a half; most of those visits were to Martinsburg. I thought about Dr. Murray, his oncologist there, who has retired now. Early on in his treatment, she mentioned to Jerry that she had a patient who was a ten-year survivor. That was very encouraging to him then, when we were both so scared.

          I thought about Jerry’s three oncology nurses, and how he always used to bake cookies and other desserts for them and for the technicians in the lab, who also knew him well.

          Every time we went for a checkup, I called my daughter Stacy, to let her know how it went. Every time but one was good news. He first went into remission in April, 2006, but relapsed in April, 2008, and went through a second round of chemo, until his second remission in 2009. This time, when we got back to the car, I called Stacy, but I was disappointed to get voicemail; I had really wanted to talk to her. I left a message with the good news.

          I thought about the educational forums we had been to, sponsored by the Lymphoma Research Foundation, for five years in a row, and the charts showing specific treatments of patients in clinical trials. The survival lines went down, down as the months progressed. We knew about PFS (progression-free survival) and OS (overall survival). There were always some people who survived on every regimen they studied. They didn’t know how long patients could survive, because the best treatments were too new and the months didn’t go out far enough. Somehow, we had never put Jerry in that category where the line just continues out forever. We had even talked about going into a clinical trial when Jerry relapsed, because researchers are desperate for patients to study, and because it is a way to get cutting-edge treatment before it becomes accepted protocol.

          I remembered sitting in the crowded waiting room in Martinsburg. The faces were often familiar, but if we didn’t go back for a while there would be new faces. Sometimes we had to wait for hours. The TV was always on, and I always found it annoying. I went with him, because I wanted all information to be given to both of us, and I would bring a tote bag with things to help pass the time. We also had to be prepared with questions for Dr. Murray because she did not routinely explain things. I would write the questions down, and then write the answers. After we started attending the educational forums we didn’t have as many questions.

          I remembered sitting in Diagnostic Imaging while Jerry was waiting for a CT scan. We talked to one vet who told us he had follicular lymphoma. “Oh, that’s indolent,” I said. “Didn’t Dr. Murray tell you that?” He said no, so we explained that he could have it for a long time, and go in and out of treatment. He didn’t understand his disease and he didn’t know what to ask. I felt sorry for him and for so many vets who just accepted everything the doctors said and did to them without question. We tell people: if you are feeling sorry for yourself, spend a day at the VA. There are many sad things to see there.

          I thought about the hot days and the cold days in Martinsburg. Sometimes we would go down to the cafeteria and sit outside on the patio, if it was nice weather. I remembered how I would drop Jerry off at the lab, where I would meet him after parking the car. It was always hard to find a parking place; it is even worse in Durham.

          All behind us now - released! It feels good but it also feels strange: the end of an era. We learned we could survive “the big “C”; having it turn into “the small “c” opens up a whole new joyous world of possibilities.

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