A Mother's Day Tribute: A Remote (Lack of) Control, by Shvetank Shah

in Vibrant Living Blog

I’m packing for a week in Seville, following my mother’s trail on the last vacation she took almost exactly five years ago. An Odissi dancer, Mom had been entranced by a flamenco interpretation of Carmen in Seville, and identified with Carmen’s vitality, her boldness, and yes, even her capriciousness. She’d come to visit me in Washington directly from Spain, and couldn’t stop raving about the performance.

A month later she was diagnosed with pancreatic cancer; a year later she passed away over Mother’s Day weekend in her bed in Mumbai, not quite 63.

I remember sitting in Mumbai’s posh Willingdon club eating akuri as my cousin Bimal, a surgeon, shared the results of the CT scan with Dad and me. Then began a flurry of visits to oncologists in Mumbai. The first time, the doctor asked Mom to leave the room so he could explain his prognosis to Dad and me, a pattern that repeated itself with every visit. Neither my Purdue-educated father nor his naturalized American son spoke up against this, preferring to use the space and our shared training as engineers to question the doctor, informed by WebMD, our what-if analysis attempting to laser through the doctor’s construct.

Every oncologist we met added more noise, less signal, reviewing the CT scan as if it were a tarot card, their interpretation pregnant with consequences. It’s liver cancer. No, it’s origin is in the pancreas and it has metastasized to the spleen and liver. One of them finally said, “This is the same cancer Steve Jobs has, but we can’t be sure because we can’t test for it in India — you’ll need to perform an octreotide scan.”

My brother, Ajay, living in New York, swung into action, and within a few days secured a visit with a leading oncologist, Dr O, at the Memorial Sloan-Kettering Cancer Center. Mom, her always curvy frame suddenly hollow, flew with Dad and me from Mumbai to New York. A few days of more tests revealed a rare form of pancreatic cancer, which indeed had splayed out to her liver. Late one evening we all met with the MSKCC doctor, absorbing her gentle barrage of science. Hepatic artery embolization. mTOR pathway inhibitors under Phase 3 trials. Radioactive somatostatin available only in Basle and Rotterdam.

She suggested Mom start with chemotherapy in the relative comfort of Mumbai given the drugs were available globally. Before we left, Ajay and I cornered Dr. O in her chambers, and asked for her prognosis. She was reluctant; we pressed, our six-foot frames towering helplessly over her tiny body. Finally, she said it was late stage cancer where a full recovery was unlikely, and gave Mom three years to live.

Dad and I went for a walk through Central Park later that June evening, summer all around us, discussing Dr O’s prognosis. I’d already read Stephen Jay Gould’s The Median Isn’t the Message, and we talked about statistical distributions and long tails. The vastness of the park shrunk around him as he fought to comprehend it; a heart patient, he had always expressed an open comfort that Mom would outlive him. At that moment, he could just have readily understood that the sun revolved around the Earth.

The search for better answers continued. My boss made introductions to the MD Anderson center in Orlando. A former neighbor from Mumbai is a cancer researcher at Genentech and opened doors at the National Cancer Institute. My cousin went to the Erasmus Institute in Holland to investigate experimental treatments.

Across the next ten months Mom’s condition stabilized, then tantalizingly improved, and then swung back toward darkness as Dr O coordinated her care over email, Skype, and phone with Dr B in Mumbai. Ajay and I, together with our wives, set up a relay between the U.S. and India, traveling for 2 weeks before handing off to the other. Our employers, colleagues, children, friends all conspired to aid this constant long-distance travel, covering for us as we spent time halfway around the world.

On each trip we would accompany Mom to a chemo session, and then proceed to hang around our childhood apartment to run errands, fill prescriptions, entertain visitors. The apartment building was identified less by its street address and more by its name — Pavlova, after the Russian ballerina. Mom remained ebullient throughout, even as her body shrank, her hair thinned, and her skin became glassy and translucent over her bones. She was by turns cajoling, charming, firing, cheering us up, supporting, loving.

It became clear as winter came that the drugs weren’t working. Dr B in India suggested alternative therapies. My brother and I, from our distant Washington-NY axis, pooh-poohed them and argued to stay the MSKCC course. During my February visit she and I stayed up late one night talking, and she asked me “How long do I have?”. Not able to articulate, I stammered out “Not long, ma. Not very long.” She was silent then, holding my hand, in the darkened living room, her eyes open and unfocused.

Then one night in early March, unable to breathe, she was rushed to the hospital; a ventilator helped re-inflate her lungs and saved her. On a conference call, my father, sad, angry, tired, finally ordered us to drop the remote strategy and turned her care over full-time to Dr B. He flatly said the chemo wasn’t working, wouldn’t work, and that she may have as little as six months left.

I flew to Mumbai in late April, for the last time. The woman I had last seen only seven weeks ago was now in a hospital bed in her own bedroom, with open IVs, oxygen sensors, O2 tanks, and round-the-clock nurses. She was in a semi-coma, mostly impervious to pain, and had completely lost her voice. There was no resemblance to my Mother — Carmen, defiant, sassy, flirtatious. Her laugh — goddamn I miss those pealing laughs. Two days passed and I barely saw a smile. Toward the end of the second day she leaned across the bed and tousled my hair, but then it was gone.

There was enough intelligence in her eyes from time to time that I was certain she gets it — gets the indignity of the bedpan, of the helplessness. There was a wry smile now and then — a grimace which would be meaningless if I wasn’t looking into her eyes. It said this is pathetic and irritates me no end. The look also shifted to resignation as we managed her day, her food, her wheelchair. Self-annoyance and resignation- not traits I had ever associated with her.

There is a passage from a Philip Roth book that I remember from my teens. The protagonist visits his mother on her deathbed. He is by her side and trying to immerse himself in the moment, but can’t, and says “even at this moment I can’t figure out what gives”. He is chiding himself for not resisting the urge to step out of himself and observing.

When I was there only 7 weeks ago, she and I talked about her sending Dad flowers, going to their beach house across the bay in Alibaug and planting more trees, drawing up her will, making peace with her sister, tying up loose ends with dignity. Now I’m thrilled when a modicum of her femininity kicks in as she instinctively smoothes back her hair upon seeing her doctor arrive.

My aunt swung by on her way back from dinner with a handful of mogra flowers. Mom always wore them in her hair, or hung them in her room near the air-conditioner when she got back from a party or her dance performance. It’s a smell I have fallen asleep to, a scent I associate with her and my childhood. The caretakers of her beach house came by with fresh flowers, yellow and white, from the frangipani trees she had planted there. The apartment was in bloom, it was spring.

Family and friends came to visit all the time. Absent Mom owning the welcome experience, I’d give them ice water and a few snacks. Of course they didn’t mind, but the poignancy of their empty plates was a double whammy. She would have never entertained visitors so poorly.

I left Mumbai after four weeks, handing off the baton to Ajay at the airport. The doctors said she could pass any day, or any week now. I had to get back to work, an open-ended stay wasn’t on the cards. I lay my head against her bosom and said goodbye. She didn’t stir.

10,000 miles later I landed in Washington, in the middle of a brilliant crackling thunderstorm. Ajay called from Mumbai and said she had passed away in her sleep. It was the day before Mother’s Day.

Garcia Marquez once wrote that love is not a means to an end, but a state of grace. As I think about spending Holy Week in Seville, I’ll be seeking that grace as well.

Read more by Shvetank at Medium.com

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