Aphasia: the phases

Aphasia told Laura there was a problem.  For years she would sit next to Anne Mei on her bed and read out loud before Anne Mei went to sleep.  In late July 2008, Laura told me that she was having trouble recognizing words, that she was having to fake some of what she was reading to Anne Mei.  Because there had recently been some very upsetting and hurtful incidents at her work, we both thought at first that it might just be stress.  But the more the problem persisted, the more concerned we both became.  Laura wondered if it could be bleeding.  I wondered if it could be a tumor.  On Friday, August 8, 2008, we drove down to Baltimore to stay with Laura’s brother, Paul, the doctor, on our way down to the wedding of my nephew, Josh Daly, in Williamsburg, Va.  When Laura described what was going on to Paul, he said that she should get an MRI when she went back to New Jersey.

On Monday, August 11, Laura called and got an appointment with her internist, Dr. Paul Goldberg, for the next morning.  On Tuesday, Laura called me from work after she had gone to the doctor’s.  Goldberg had sent her for an MRI.  That had taken a while because they seemed to keep looking.  She was very concerned that one of the technicians had said “Bless you!” to her on the way out.   I describe the next few weeks in two posts: Somatic pain and The team.

Laura’s aphasia got progressively worse through the biopsy, consults, and waiting for the start of radiation/chemotherapy.  Suddenly, she couldn’t find the words to ask for something as simple as a glass of water.   If she wanted a potato, she would say, “You know, those things you Irish eat.”  But Laura was bound and determined to get her language back and to return to work, not based on any faith that she could do it, nor even the hope that she would get better.  It was sheer stubbornness, an absolute refusal to accept aphasia.

I had met Laura at what had been a low point in her life, marked by a number of personal and career setbacks.  Yet, she carried on, and not with a grim face.  She made cheer in her friends and her music.  Mostly, I could see an inner smile despite external adversity.  Now, in the face of a dangerous cancer and its theft of perhaps her most precious possession—language, she went forth on a path to get her words back.  Almost as soon as the first course of radiation started, she found her own speech therapist, navigated insurance coverage, and was even able to drive herself to sessions before the debilitating effects of radiation kicked in.

Part of the frustration of aphasia was its unevenness and unpredictability.  At home we spent frustrating hours looking at pictures—hairbrush, toothbrush, comb, spoon, fork, and other common objects.  She couldn’t recall the words.  I would give her hints, sounding out the word in pieces, but she didn’t get it until I gave her the whole word.  Then I would have her repeat it and repeat it until she could say it.  But if I went back to the same picture a few minutes later, she couldn’t remember the word she had been repeating.

When the first course of radiation ended, we had to wait for the inflammation to recede before an MRI could be done to see if treatment had affected the tumor at all.  This waiting period sorely tested Laura’s determination.  Because the end of radiation meant less pain and nausea, Laura was able to stay at home on her own.  Frequently, I would return from work to find her in a state of exhaustion and despair because she had spent the whole day working on her language exercises. She would do these same frustrating exercises over and over with the help of a little digital player, on which I had recorded the words corresponding to the pictures she had to identify.  Yet, she refused to listen to books on tape, to listen to the radio or watch TV.  No substitutes for reading would do.  She would read (and understand) The New York Times and The New Yorker when she couldn’t remember the word “comb.”   She was grinding down her spirit between her determination and the physical facts of the condition of her brain—continued inflammation from the radiation and a tumor that had not stopped growing in the left temporal lobe, the language center of the brain.

I pleaded with Laura not to work on her language exercises when she was home alone.  Just as Charlotte Delbo was obsessed with finding water to drink and did not hear her friends, much less listen to them, Laura was obsessed with finding her words again.  She could not wait for me to come home from work and she would not do anything that might otherwise occupy her time, except the laundry and cleaning the house.

When the tumor continued to grow through the first course of radiation and chemotherapy, the oncologist tried Avastin just before Thanksgiving 2008.  Avastin had an almost immediate effect on reducing the tumor and improving Laura’s functioning, including her speech.  She improved enough that she was able to go back to work as a lawyer from March through June 2009.  During this period it was most evident that Laura’s continuing language difficulties had not impaired her mental acuity.  Yet Avastin stopped working and those language difficulties increased.  Finally her oncologist could not stop denying the plain evidence of the MRIs that the tumor was growing again and sent Laura for the operation to reduce the size of the tumor described in the trifecta.

When we were told 14 months after diagnosis that there were no other “good” options besides finding a clinical trial, Laura finally consented to listen to recorded books.  I registered her for e-book downloads from the public library. I also bought her a new MP3 player because the library’s e-books would not play on her iPod.  Because of her aphasia and visual cut (to be described shortly), I had to put a bit of yellow tape on the on/off button on this player. Because of the repeated assaults on her cranium during the preceding year (biopsy, plate removal to clean out infection, first course of radiation, tumor resection, most recently stereotactic radiosurgery), she could not tolerate the discomfort of earphones, much less ear buds.  Luckily this MP3 player had a speaker that was loud enough for her to hear. When I went over the selection of books available, she didn’t want any pop fiction, or really anything light. She picked Shakespeare plays. Heavy ones, like Macbeth and Othello.  As time went on, and she wasn’t able to work outside in the yard anymore, she spent her days in the house listening to Shakespeare.  Sitting at the kitchen table, but more often in bed, checking out the fence outside her bedroom window that she wanted me to fix, and listening to Shakespeare.  When even the yellow tape didn’t help her with turning the player on and off, she just had me turn it on in the morning when I left for work and it would still be going when I came back, more and more frequently at lunch or right after lunch to tuck her in for a nap.  She fell asleep listening to Shakespeare.

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