I’ve been a little troubled by all the remarks about how Senator John McCain will fight his just-diagnosed cancer. It’s typically kind and hopeful to offer that wish, and he is such a strong man. But this particular kind of tumor is a formidable foe. My mother was diagnosed with one 31 years ago this summer, and died early that Halloween.
That summer (1986, if you’re counting) I had begun to notice my 81-year-old mother was behaving differently. She was very irritated with a dear friend and had hurt her feelings. One day I went to her condo and found her locked in her bedroom with the alarm system armed. She was unsure about making decisions. Her college roommate, who lived in Colorado, had invited her for a visit. She had accepted but hadn’t made any reservations. John had commented to me that she should have a medical check-up before she made the trip, as he felt the altitude might exacerbate any illness she was experiencing.
Mother (pictured above, the year before the diagnosis) loved Chinese food. Mary Kathryn, John, and I took her to her favorite restaurant and could see something was just not quite right. She insisted she would call the doctor the next day, and we took her home.
Later that evening, Mary Kathryn called me. She had been praying about her grandmother and asked if I would take her to the emergency room. She went with me to Mother’s condo and, surprisingly, Mother did not argue.
After being checked at the ER, the physician on call told me she needed to be admitted immediately. He thought she was showing symptoms of a stroke. He called her doctor, and he refused to admit her, to the chagrin of the ER personnel. The nice ER physician was Dr. F. M. Wilson. He told me to take her home and not to leave her for a minute, that she was a very sick woman. He could not override her personal physician’s orders and told me to take her to the physician’s office as soon as they opened the next morning. The next day, I had to be very assertive because the doctor said I was just overreacting. He finally agreed to order a CT scan of the brain. The doctor called me the next afternoon about five and was apologetic in his report to me. The radiologist had found a glioblastoma which had already crossed mid-brain. I knew nothing about this diagnosis, as I had never heard of this type of tumor. I remember a physician/friend stopping me in the parking lot and telling me he hoped for her sake it would be a fast death. I was stunned.
The next morning I called her internist in Memphis, and he admitted my mother to Baptist Hospital so she could have one of the new tests – an MRI. That evening the surgeon from Semmes Murphey Clinic came to her room with a resident to talk with us. He said there was no need for an MRI because the radiologist, Dr. Bill Garner in Jonesboro, was such a perfectionist that the surgeon never ordered other tests. He wanted to schedule surgery for two days later and said he would de-bulk the tumor to make her more comfortable. I noticed the young resident trying to catch my eye, and I excused myself to go into the hall. He followed me saying he would like to speak with me, although he could lose his residency by going around the chief surgeon. The young man told me my mother could have a fairly comfortable time for several months enjoying her family and friends — or she could have the surgery and spend the next nine or so months as an invalid, probably in a nursing home. I thanked him and went back into the room, where Mother was agreeing to the surgery. The doctors and I shook hands, and they left.
I told my family about the visit with the resident, and we decided to get more information. It became obvious that more thought should be given to the question of surgery.
Then came the task of dismissing my mother from the hospital. The internist had disappeared by then and wouldn’t return my calls. I was panicking because I didn’t want to take her against medical advice. Finally, I called Dr. Willie Young. He understood immediately and told me Jonesboro had a new neurosurgeon, and he would have him call me. After Dr. Ken Tonymon’s call, we were able to have her transferred to St. Bernards in Jonesboro.
After seeing Mother and examining her, Dr. Tonymon was disappointed that an MRI had not been done, as my mother was in great shape for her age. He scheduled one in Little Rock. Billy Joe Emerson drove Mary Kathryn, my mother, and a nurse to Little Rock. Mother was very apprehensive as well as claustrophobic, and it was not an easy trip for anyone. The machine broke down halfway through the test. However, they had a partial read, enough to confirm the diagnosis. An oncologist was also conferenced, and he agreed that the best treatment was palliative care until time for pain control. The Decadron, a drug still commonly prescribed to combat swelling, was to be continued. It gave Mother an enormous appetite! John, knowing how she loved raspberries, arranged with his buddies at the supermarket to get fresh ones in daily. They did this until she no longer could swallow.
She spent the next two and a half months in her condo surrounded by the people and things she loved. We took her out to lunch, and she even enjoyed a couple of bridge games at her place. During that time, she had her meals at the table with us.
Dr. Tonymon made all this possible because he was willing to make house calls a part of his routine, and he would draw the blood himself for tests. She was unable to walk, so the wheelchair became a part of our lives. I had nurses round the clock, although I couldn’t trust that they would come on time or at all some days. After we had her settled at night with a nurse, I would go home to sleep.
I remember one afternoon going to the office and when I returned to her condo there were about six people standing in the front yard. I asked why and was told the nurse said my mother needed to rest. I invited them in, telling the nurse she had a lot of hours to rest ahead, and a big smile appeared on Mother’s face. I am still embarrassed about losing my temper one afternoon at a nurse; she kept following me around and talking instead of doing her job, and at one point asked me if I was all right. I told her I would be — if she would just get out of the kitchen.
The last six weeks or so, we had a hospital bed brought in. Mother had always had her hair done twice a week, and John helped me wash it by holding a trash bag at the head of the hospital bed at her neck, and I used a pitcher to rinse. Then I would blow it dry and she smiled at the results. I know that these little things made her feel we cared.
About two weeks before her death, she was taken by ambulance to the hospital as she needed a feeding tube. She could no longer swallow her medicines, and they were important. Especially critical were the anti-seizure drugs. She was fortunate to have had only one seizure, and I attribute this to Dr. Tonymon’s careful use of drugs. One day I called to tell him she was complaining of a headache, and I had given her two extra strength Tylenol. He said that was good, but in the future to give regular strength as too many extra strength tablets could damage her liver. And this for a person with only weeks to live? Laughter is healing, and I did have a little laugh at his expense as I put down the telephone.
In a few more days the morphine was started, and she slept most of the time. Frances Puryear would come by as she walked home from work at St. Bernards in the afternoon and somehow Mother would rouse at the sound of Frances’ voice.
Her days were as full of smiles and laughter as we could make them. And her death was peaceful. I thank God for the wisdom of that young resident and his brutal honesty with me. Any decision about treatment is such a personal and individual matter. I remembered that Mother asked John to promise her that he would never put her in a nursing home, and his answer was that he could not give that promise, but that he would promise he/we would not as long as she had any knowledge of where she was. She had such a fear of a lingering illness and used to say she wished she could drop dead at the bridge table!
Since then I have watched a beloved younger friend die, who showed such strength in wanting to live. She was such a cut-up. I was taking her to radiation one afternoon, and I commented in pulling up to the reserved parking that I had hoped never to have to use the oncology parking. She quipped that even worse would be to have to use the Gastroenterology place. Senator Ted Kennedy was diagnosed during this time, and she had great hope that something would be discovered for him and that it would help her. She dreamed of going to Duke and being cured.
A dear friend from school days died several years ago of this same type of tumor. Her husband called me from their home in Newport Beach and told me she had forgotten she had told me goodbye. I was on a plane the next day and sat in a beach chair by her and just talked nonsense, broken hearted and holding her hand. Her husband tried everything. The gamma knife was new then and was tried a couple of times. He took her to Boston for recommended treatment, but the tumor always came back.
Three others have touched my life in special ways after their diagnosis.
Duke reports the polio virus treatments may help, but I understand nothing is definitive yet. I hope that Senator McCain will choose the right path for him and for his family. The hope is always for a cure. What a blessing that would be for others suffering the same diagnosis.
Glioblastoma doesn’t have to be about the fight. It can also be about the comfort of palliative care, and making the best of precious time left together.