The home stretch; the longest lap

The disease that has been ravaging my mother’s body for almost two years is now in its home stretch. The stage-four breast cancer diagnosis came out of the blue after we saw blood on her blouse and took her to the Emergency Room. By that time, the cancer had managed to block the flow of oxygen and blood to some parts of the breast, leaving a gaping hole of necrotic tissue. We kept the diagnosis secret from her, not wanting her to wake up every morning thinking about her final days. We wanted her to continue being as vibrant and positive as she always was. We took her to get a new dressing every day, then every other day when the wound began to dry up. She thought she only had an abscess.

She was rushed to hospital in an ambulance three weeks ago, malnourished and unable to breathe freely. She had been unable to eat or drink. Her heartbeat had become more irregular and her breathing more like panting. The cancer had reached her brain and wrecked the part that controlled her upper respiratory and digestive systems.

At the hospital, a feeding tube was inserted through her nose into her stomach to give her a healthy liquefied diet. Her body rejected it, so the doctors settled for a scientific diet. To deal with the breathing difficulty and the phlegm, another tube was inserted into her oesophagus. It made the suction less painful and allowed a tube from an oxygen machine to be inserted to help her breath.

After three days in a regular room, her condition worsened, and she was move to the intensive care unit, now called the Critical Care Unit. More tubes and bags hung around her bed.

Of course, we, her four children, gave the hospital permission to do everything possible to “keep her comfortable”. But we do not know and can never entertain whether what was being done to her was making her comfortable.

Watching my mother go through all these treatments, I came to truly grasp the significance of the conundrum raised by New York Times writer Alan Cowell: “Should life be truncated if the faintest glimmer shines through the dark carapace of disability and indignity?” 

Is it justified to prolong life if by doing so you violate its sanctity and dignity?

The first time she opened her eyes after several days of unconsciousness, I was there. She looked at me and blinked hard and frequently as if to tell me something. It was a deliberate act, not involuntary. That was all she could muster. There were no tears in her eyes; the body could no longer produce them.  

Days go by in the same medical routine. My mother no longer tried to send signals through blinking; the resignation must have set in. Now she only occasionally opens her eyes, looks at us, and sometimes stares into space. She nods and shakes her head gently, almost unnoticeably when asked simple questions like “Are you tired?” “Are you sleepy?” They are meaningless inquiries, meant only to make her feel engaged so she doesn’t drift away. We don’t want to know more. We have never asked the only real and pertinent question: “Are you comfortable?” 

It is too painful even to think it.

Every morning, the case doctor reports that my mother is “stable”, ie, has maintained her “status quo”. The doctor knows about the untreatable cancer. She has been trying to do her best.

We take turns visiting our mother round the clock. I take the night shift, the last family member to see her before the next day. I pray with her for hours. It’s not imperative that she knows about it every time or all the time. I whisper to her every evening that we are going to do the prayers together. Sometimes she nods, sometimes she just dozes off. At times, she opens her eyes and looks at me. 

Some evenings, both of us are at peace. Some evenings we are not. When I am with her, I leave all the worries of the world at the glass door as I enter. But as evidence of her discomfort and anxiety becomes more apparent, I admittedly get shaken to the core. Are we doing the right thing by her, and not just by us? The one consolation I give myself is, I signed the agreement with the hospital that appears on the metal cover of my mother’s ICU file – “No CPR.”

Last night, the oxygen helmet was placed back on her head after being temporarily removed during the day to allow her to breathe on her own. My mother kept her eyes open, her hands raised constantly towards her head. She would grab my hands as hard as she could at times. I could hear her the intense disquiet of her heart and feel her angst. The conundrum loomed impossibly large. The home stretch is already long and painful and yet we are trying to prolong it.

Unable to concentrate, I stopped the prayers. I put my arms around her, placed her hands on my head and murmured that if I could take away all her pain and anguish and make them mine, I would. She seemed to calm down. I leaned back and looked at her.  She was looking at me with a clear message in her eyes, “I would not let you.”

At that moment, two hearts were broken and became one. Both of us were forced to accept that there would be no answer to the conundrum.