I never thought I would change my mom’s and my baby’s diapers in the same day.
“Please don’t let me get stinky,” Mom had pleaded with me. She was bedbound now. “That hurts!” she yelped as I massaged her swollen, atrophied left arm and leg. I brushed the thick, curly hair sprouting over her right temporal scar. She cringed at the washcloth: “That’s cold! I’m cold! Stop! STOP!” I tried to divert her with a picture of baby Robin. The right side of her face smiled. She gestured to hold the phone but it slipped and slipped and slipped.
Six months earlier, Mom was packed to make the 2-hour drive when my water broke, too early. When I called her, panicked, she reassured me: “Everything will be okay.” Mom was right. She visited often in the early months, bringing food and energy. I was running on a few hours of fragmented sleep. “Go take some time… nap, walk, whatever you need!” I would return to find Robin snuggled in her lap, her hands deftly knitting above him, a full grin across her face. I cried when she left.
Then Mom missed my sister’s birthday. She loved birthdays. I called her to check in. My looming return to work and day care were like storm clouds. Mom, too, was worried. She kept dropping things with her left hand. And felt “off.” . Anxious. Her physician had started an anxiolytic.
“Do you think I could have a brain tumor?”
“No, you don’t have a brain tumor.”
“How do you know?”
“I’m a physician, remember? You can’t have a brain tumor.”
My sister’s wedding later that month eclipsed these worries. But family, who had not seen Mom for months, sidelined me multiple times at the event: “Is she okay? She seems off.” After proudly walking my sister down the aisle, Mom promptly donned a parka over her formal dress despite the warm evening. It hung loosely over her shrunken frame. I was engrossed with keeping my boys entertained and fed. Normally Mom anticipated my needs before I did…Why didn’t she offer to help? She’s just stressed, right?
What she needed was a vacation. Mom and Dad embarked on a bucket list trip to Alaska. Nursing Robin in the middle of the night, I discovered an unexpected message from Dad. “Not sure what’s going on… but we are heading home.” Mom was having trouble walking. She was not eating much due to difficulty holding utensils in her left—her dominant—hand. My dad, also a physician, had discussed his observations with me, “Do you think something’s wrong? What should we do?” Was it fatigue? Stroke? Worse?
Meeting my parents in the emergency room, I was not used to asking for directions in a hospital. Mom curled up in a stretcher: “I’m okay… everything is going to be okay.” Urgent brain CT: “Suspected right parietal and temporal mass with intraparenchymal bleed and significant mass effect.” Urgent decompression recommended. Waiting for surgery, I paraded around the room with my portable breast milk pumps. I wanted her to laugh before having her skull opened. The left corner of her smile drooped. “Why is this happening to me?”
I offered my rehearsed answer, “It’s not because of anything that you did or did not do.” But what could I have done? Her other physicians? She stared up at me for a few seconds.
“What is it Mom, are you in pain?”
“I’m just admiring you.”
Following the diagnosis of her glioblastoma, Mom applied herself to therapy with the fervor of a former teacher and avid exerciser. But all things blurred: “What time is it? Did we eat breakfast?” And we had endless questions for her: “What’s the login for the bank? What’s the story behind this toy?” She held Robin in her lap, oblivious as he fell to her left. As she grew increasingly volatile, I traveled alone. Sitting in silence, nothing to do, grief consumed the space. Mom, home, work, repeat: Mom (Do the kids miss me?), home (Am I doing enough for Mom?), work (How am I supposed to get anything done?), repeat.
At work, everything was a brain tumor. Chief complaint: headaches, feeling cold, anxiety… is it a brain tumor? How many medical time bombs are lurking in my practice? I realized that I was walking down a path of potential bias, but this did little to slow my mental alarms. While I now related deeply to my patients and colleagues in similar situations, I felt unsure about how much to share. At the same time, the mundane grew increasingly intolerable: Why are we talking about toe pain? Don’t you know that my mother is dying?
Mom grew tired. She couldn’t walk or eat by herself. She couldn’t knit, despite all of the adaptive equipment that we tried. But she gripped the railings with surprising strength, in protest, as we carried her downstairs back to the hospital. The tumor had aggressively progressed. After talking at length, Mom decided on hospice. The neurosurgeons stopped by the morning of her discharge. “I’m leaving? But what are my treatment options?” They looked wordlessly at her, at me, at Dad. Were we giving up too early? Would I think differently if she were my patient?
I turned to Mom: “Remember, we talked about all this and you wanted to go home?”
As we packed up to leave, her eyes widened in my direction: “This is the last time that I’m going home, isn’t it?”
We both knew that she was right…. How did we get here? What did I miss? An unwelcome flashback: Heavily pregnant with Robin, I was lagging behind Mom on her brisk nightly walk in the cul-de-sac of my childhood home. Was her left shoulder lower than the right? What if I had stopped right then and insisted on a full neurologic exam? Rationally, I know that we would have reached the same juncture if I had confirmed her worst fears that day. But I am haunted by hindsight.