Brain Tumor: Too Much Information?

mother brain tumor
“I don’t want you or your sisters to tell anyone that your mother has a brain tumor. We’ll tell people that she had a stroke. It doesn’t sound as bad.”
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“I don’t want you or your sisters to tell anyone that your mother has a brain tumor. We’ll tell people that she had a stroke. It doesn’t sound as bad.”  My mother was diagnosed with a glioblastoma multiforme in March 2006. My father’s statements to my sisters and I reflect the level of fear felt by patients and their family members when a diagnosis of a malignant brain tumor is received. 

The first red flag that something was wrong with my mother came when one of my sons and I picked her up to go to one of the other grandson’s basketball games.  She was unusually quiet on the way to the game and she was hesitant when she answered me.  She was walking slowly into the basketball game and I told her that we needed to walk a little faster to get into the game so that we would be seated before it started.  She was seventy-five years old and although she had a lot of vigor for her age, I was aware that she was a bona fide senior citizen.
During the game, I asked her names of the some of the players and it took her a long time to answer me. I dropped her off at her house and she stared at me as we pulled away in our car. I asked my son if he noticed the change in his grandmother and he said that he thought that she might be angry about something. I didn’t have that same thought but I thought that maybe she was depressed or that something was physically wrong with her. Depression would have been unusual for her since she was a survivor of many hardships in her life, especially during her early years.  Her nickname was “Vivacious Virginia” in high school and that was an accurate description of her personality even as she aged.  I did ask her that evening when her next doctor’s appointment was and she responded that it was three days later. 

Her family doctor was a friend of our family so I called him the evening before her next appointment and told him of her unusual behavior.  I had also called my sisters the day after the basketball game and shared my experience of our mother’s behavior. One of them told me that our father had told her that some of her home activities had been out of the ordinary.  She had taken her to lunch but didn’t find anything out of the ordinary except that she did grapple with word choices at times.

In my parent’s later years, they shared a morning crossword puzzle. My mother would begin it and then hand it to my father to complete. For a few weeks, she would hand it to him and had done none of it.  She never verbalized to him that she hadn’t found any answers.  My father had first attributed some of her behavior on “senior moments.”  I also found out from my other sister that my mother had fallen in the bleachers at a previous basketball game.  She had told my father this because he was unable to attend the game that night but no one else.  I had not seen my mother for three weeks since I was busy with my mother-in-law who had been hospitalized with two cerebral hemorrhages due to a fall.  She had no other family locally so I wanted to help her as much as I could.  My parents had my other sisters and neither one of them was having any major health problems during that time.  Or so I thought.

After my mother’s doctor’s appointment, her doctor called me and agreed with me that something was wrong with my mother. She was not her usual sharp-minded self. He had ordered an MRI for her and when he had the results, he called me with the bad news. He said that the radiologist had interpreted the MRI to show a growing tumor deep in her brain and he finished the conversation by saying that he was “sorry” about her condition. I knew that he meant it since he had told me in the past that she was a favorite patient of his.
There was not a definitive diagnosis on the MRI since it was early in the growth pattern of the mass.  A malignant brain tumor rings itself on an MRI with necrotic (dead) tissue surrounding it as it grows and damages the adjoining brain tissue.  Her family doctor referred her to a neurologist and he concurred with the radiologist after performing a series of neurological tests on her.  One of these tests is the test of sevens.  Patients start at 100 and count back by seven.  My mother couldn’t count back beyond 93.  My mother had managed a credit union and dealt with numbers much of her life. She was also unstable walking across the examining room.  The neurologist then referred her to an oncologist for treatment options.
Two weeks after the original MRI, my mother had a follow-up MRI and an MRA and the diagnosis of a grade IV malignant brain tumor was given.  This is called a glioblastoma multiforme or GBM by the medical field.  It had shown itself to have a ring around it on the MRI and that is necrotic (dead) tissue around it as it attacked surrounding brain tissue.  The neurosurgeon asked me if he could perform a brain biopsy to determine the exact cell type for the radiation treatment. She would have to be awake for this and wouldn’t be able to answer him as he was performing it.  She already was manifesting pronounced aphasia in her speech by this time.  She answered in one-word answers and we were not sure of her depth of understanding. We discussed this as a family and decided against it as not being in her best interests. It would be too frightening for her and she wouldn’t be able to verbalize any fears or feelings of discomfort.

The hospitalist met with our family and gave us the grim prognosis. We went to her hospital room and he told her what they had found on her MRI. She cried for a very short time and looked stricken. Almost immediately, a team of two palliative nurses came into her room and asked her some questions. One of the questions was as to whether she was depressed upon hearing her diagnosis. Of course, she answered yes.  My sister and I were annoyed by that but knew that their intentions were good so we remained uncharacteristically quiet. 

The decision for treatment is a gut wrenching one for families if the patient isn’t able to actively participate in the decision-making.  My mother had aphasia (speech difficulty and an unknown amount of cognitive function due to the aphasia) and when asked, she answered yes to treatment.  The remaining family members, my father and two sisters and I were evenly split as to what course of treatment to take.  My father and one sister wanted her to die without treatment because they felt she couldn’t fully grasp her prognosis. They were also thinking of her comfort and well-being. My other sister and I wanted to give her some treatment since she had given an affirmative answer when given the option of radiation and had answered in a rare, complete sentence.  We, too, were cognizant of her well-being and we arrived at a compromise-palliative radiation with the goal of keeping her comfortable by somewhat controlling the rapid tumor growth.  I am at peace, even today, with that decision.  I could not have felt that same peace had we not given her any treatment option especially since she only lived such a short time after her diagnosis.

My mother lived only ten weeks from diagnosis. That extra time provided by the palliative radiation gave family members and friends time to visit and say goodbye to her.  Her smiles and the testimonies of love given to her are among my fondest memories of her dying experience. It was hard to know exactly how much she understood but she seemed to enjoy her visitors. She was a “people person” and there wasn’t a day in her last few weeks that she didn’t get family members and friends as visitors to read, sing and pray with her.  I gave her many backrubs and derived much pleasure in doing her personal hygiene care.  It was my last gift to her and it was the least that I could do for the very woman who had given me life. She brought me into this world and I was determined to help her leave it as peacefully as I could. My family members and I derive some peace and yes, even joy that we were successful in this. We created a warm environment full of family pictures and flowers for her in her extended care facility. We brought items from her home to create an air of familiarity for her when we weren’t there. She was seldom alone except at night. She slept most of a twenty-four cycle and this isn’t uncommon with GBM and other brain tumors. 
I regret the decision to tell my mother her diagnosis. In fact, my whole family feels the same way. We don’t know how much she understood and if it made any difference for her. She had no say in how she could prepare for her death since she was so physically incapacitated and couldn’t give us any instructions of her wishes. 

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