The Taco Bell seemed to have the vegetarian food, quick service and economy price we wanted. It was familiar. As we walked into the little dining area, my wife Phyllis suddenly appeared dazed. “I’ll have…. a sunny... Taco Bell.” Then she retreated to a chair to rest. My daughter Meg and I looked quizzically at each other. We ordered for her. A bean burrito and a glass of water. “Are you okay?” I asked. Phyllis nodded, “I feel a little tired.” “You’ll feel better after you have a bite to eat.” Meg said. Meg was right. The cloud that had enveloped Phyllis lifted as we ate. She was back into the conversation by the end of the meal.
Phyllis seemed to need plenty of time to rest on this trip. It did not stop her from taking her turn at driving on the ride home. She kept to the speed limit. Soon, it was winter again. March and April could be counted on as not quite spring in the Taconic mountains of eastern New York State.
The Berkshire Mall in Lanesboro, Massachusetts was the nearest indoor mall to our home. There was a Sears and Macy's there. It was warm. Not quite the beach we had left a few weeks before, but a place to walk out of the cold and mud. Macy's had a sale, as usual. We were looking for some fresh spring clothes, and wandered around the racks in the women's aisle. Phyllis had a few items. "I feel strange," she said softly, "I have to sit down." There were chairs near the fitting room where men could rest while waiting for their wives who were trying on clothes. "Come over here" I said, grabbing her hand to usher her. "Are you okay?" I asked. She nodded her head, and sat there dazed for almost fifteen minutes. I kept an eye on her, but, rather than hover, I kept my distance. The idea of new clothes got lost in the daze. When Phyllis recovered, she said "I just needed to rest suddenly. Maybe I need some energy."
"Okay, we can get something at the Coffee House. It's just next door."
We ordered a couple biscotti and tea for Phyllis, coffee for me.
"What do you think happened back there?" I asked.
"I don't know." she replied, "Maybe leftover fatigue from the Myrtle Beach trip. I'm okay."
We had our snack in silence, and then decided we didn't really need to shop.
"Let go home!" we said simultaneously.
It was late March. A few days later, the sun was heating up our porch, enough to make it comfortable to sit and get sun. I went into the den to pay some bills. I worked on that for a short time. Phyllis came in from the porch. "It happened again," she said. "What?" I asked. "That strange feeling. I don't like it. I'm going to call Dr. Sparks." It was Dr. Sparks who had pronounced Phyllis in good health in January.
The receptionist set up an appointment for the next day. Based on the symptoms described to her by Phyllis, the Doctor did a neurological evaluation; balance, walking, talking, hearing, memory, coordination. She examined her tongue. All appeared normal.
"Whatever is going on is from the heart or the brain. I will set you up for an MRI in Hudson, and then you will get a heart monitor at Columbia Memorial Hospital, soon!" she said with a hint of urgency.
It must have been a slow week for the scan machine. Both the MRI and heart monitor available in two days. Dr. Sparks described the MRI: "You will be placed in a tube. There will be a lot of noise, but it won't hurt you. It takes pictures of your brain. Lasts about forty-five minutes."
Phyllis looked agitated as the procedure was described.
"Are you claustrophobic?"
"Yes, I am."
"I'll give you a prescription for Valium…. take it fifteen minutes before the scan, and you will be fine."
We headed to the pharmacy to get one Valium pill. Despite the flurry of activity, the impending tests, we remained calm. Nothing had happened, and we resorted to our time honored practice of calm and courage. I was in the state of denial, certain of one thing. The results of these tests would be negative for whatever they were supposed to discover.
How quickly certainty evaporated as Phyllis was strapped into the MRI chamber! The technician made her comfortable in the cold room. He placed a cushion under her knees, a washcloth to cover her eyes and two blankets for warmth. Earplugs were required The clanking and buzzing of the magnetic resonance imaging machine finally ceased after about forty-five minutes. The technician made a phone call while the machine was silent. Then, a wrinkle came into my certainty as the technician approached with the news, “The doctor wants some pictures with contrast, so a nurse will be here shortly to inject some dye to help the process.” I mumbled some assent, but also noticed some change in his demeanor. Tension. Something wasn’t going well. Maybe the machine wasn't working right. What was the need of contrast? It was a question I did not ask at the time.
I listened to the plan as I held her hand. She was relaxed and comfortable. My heart was pounding. As we waited for the dye injection, I held Phyllis' hand and listened to her plan for a backyard pergola. She was relaxed and comfortable. My heart was pounding. Courage, calm. How about Valium for me?
Upon completion of the MRI, we were scheduled to go to the hospital to get the heart monitor set up. We were already late for that. Our tight plan changed when the technician appeared with a large brown envelope. “Take this directly to Dr. Sparks. She is waiting for you at the office. You don’t have to go to the hospital for the heart monitor. We will call and cancel that for you.” He handed me the heavy envelope with no further comment. His demeanor had changed from relaxed to urgent, although he tried not to show it. We had our orders.
We sped the 12 miles from Hudson to Chatham, somewhat relieved that apparently the heart was not an issue; and what could really go wrong with the brain? As we dealt with the uncertainty of that winding road, more so was the caprice on the road of life. The envelope travelled with us; looming larger with each mile travelled.
Our afternoon began with the MRI appointment at 1 p.m. It was now about 4:30 p.m. Daylight was fading as we burst into the waiting room of the Doctor's office. We were anxious, but still in control. The envelope was really heavy. The receptionist unburdened us from the weight, and shuffled the envelope to Dr. Sparks. We almost sat down. The nurse called Phyllis' name, and we stepped into the interior office. Dr. Sparks conveyed an attitude of calm as she held the tabloid sized films up to the light. She studied them. She then turned, and announced to us “You have a brain tumor, about the size of a quarter, on the left side of your brain. It does not seem to be cancerous, but it has to be removed.” We flapped. I heard that the tumor could be taken care of. Phyllis heard that someone was about to mess with her brain.
"I will set up an appointment with a surgeon in Albany who is very good at this, Dr. Rush at St. Peter's in Albany is an excellent neurosurgeon. She knows the brain. She can evaluate the films way better than I can and tell what has to happen. Probably surgery to remove the tumor and get you going again."
Incredulous, Phyllis asked, "How did I get this?"
"It's hard to say. It doesn't show up as being cancerous. The dye doesn't indicate anything like that." the Dr. replied. "I'll set up an appointment for you. Bring the films with you so she can see what's going on. "
We left the office both shaking at the prospect of brain surgery, fearing the worst, hoping for the best, bravely carrying that heavy brown envelope to that next appointment.
Dr. Rush had a half hour of time the next morning, so we trucked up to St. Peter’s Medical annex that day. The brown envelope joined us. Our son Dan met us there. The three of us crammed into a little office, and the doctor came in. The envelope freely yielded its contents to the doctor, who rifled through them to find a couple pictures that would tell her what she needed to know. She clipped them to a viewing light, studied them, and after a moment or two said, “It looks like a low grade glial tumor…it's not cancerous… but its position in the brain makes it inoperable, and risky to biopsy.” Phyllis responded to this news, “Well, at least I won’t have brain surgery,” which apparently was more frightening to her than living with and dying relatively young from the “benign” brain tumor. "So what should we do?" I asked.
The neurosurgeon replied: "I would like to get a better MRI. This one is cloudy. There's a place in Troy that has a newer machine that may give a clearer picture, and there is a doctor there who I trust to give an accurate diagnosis, perhaps without a biopsy. The film here indicates a lot of inflammation. I want you to take Decadron to reduce the inflammation, and after a few days on it, we will plan for the MRI. My secretary will set it up, if you don't mind waiting."
"Then what?" I asked.
"I'll review the new information and make some suggestions, maybe radiation, or chemotherapy."
'"What is the prognosis?" Dan asked.
"It's slow growing so probably six or seven years. Other than this, your mother is in great health, so you never know. I don't like to make predictions."
Six or seven years.
We had both retired young from our careers as teachers. I was not yet 60; Phyllis was the same age. We had built an addition on the back of our house, the porch, where we could entertain in grand style from spring until Christmas. Our income and health plan were adequate for our needs and togetherness for years to come, and suddenly, six or seven years!
Besides the usual physical description, the results of tests, significant factors in the Doctor’s write up, there were two sentences that stood out for me.
“Her affect is somewhat unusual as she does not appear to be upset regarding this, however this may be her general way of dealing with things. She is awake, alert and oriented.”
Those words brought hope to me.
Phyllis had had a lifetime of dealing with difficult things, including the earlier than normal deaths of her mother (65yrs.) and father (58 yrs.), and the untimely death of her brother at age 41. She had grown strong like the oak or the cypress in Khalil Gibran’s poem about marriage, able to deal with adversity, including this ominous news. Dan and I joined her to pursue a solution. We all practiced courage and calm. It's what makes us strong in the face of disaster, competent in confusion, hopeful when the lights grow dim.
My brother George suggested we get a second opinion from the Brain Tumor Center in Boston or Sloan-Kettering in New York. I knew the Boston area pretty well. Our daughter Meg lived there. It was manageable for us to get there and stay over. It was pretty easy to get the process started. Blue Shield would cover the second opinion, and whatever steps were needed to address the issue. We wanted a long life together, but we wanted to enjoy what life we could get. Six or seven years, maybe 10. We decided to get all that we could. Before Becky called the next day, we were just about set up to see the top brain doctors at Massachusetts General Hospital.
On Monday, I confirmed an appointment at the Brain Tumor Center in Boston. Phyllis was cheering my pursuits, and wanted the second opinion from Boston. Neither of us were enthused about radiation. Maybe there were some new therapies to solve the problem that had only been a nuisance for a little more than a month. We hoped it would slink away the way it had come and life would be normal again. I combed the internet trying to put pieces together. There were no causes that applied to Phyllis’ situation. No cell phone usage ever; minimal exposure to power lines, microwave only recently enshrined in the kitchen; healthy diet, worked out regularly; normal weight until her appetite was enhanced by Decadron to reduce inflammation. It was not a tumor that metastasized from some cancer in the body. She was a happy person. The tumor happened.
I carried the newest pictures in a sleek white envelope. We looked over the MRI films with Dr. Sage. He pointed out the tumor with its infiltrating lines that were approaching the midline of the brain. "It looks like it crosses the midline in this picture. The midline has moved a bit. This is difficult," he said, “I am glad you are going to Boston; I don’t know where to start.”
"What's the problem?" I asked.
"I'm uncomfortable using radiation without first having a biopsy. I would like to know what the Boston group think of that; and where to radiate. I will do whatever they suggest."
We walked out of there, tired, but relieved. Nothing was going to happen yet. We stopped at Denny’s, another of our “favorite” fast food places, for a cup of coffee and a sandwich. We laughed at the crazy situation where one doctor would not operate, and the other would not know where to begin with treatment.
"Suppose we have six or seven years?" I said. "How should we live it?"
"Just enjoy what we have… .I want to be with you… enjoy Dan and Meg…and the family… have some parties… nothing extraordinary…just be with you...maybe go away once in a while."
"That sounds like a plan…we can do all those things," I said.
We lingered over coffee, confident of life no matter what the doctors would say in Boston.