White Knuckling

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The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays.

Kari hated her knuckles. Her skin tone was a product of an Acadian mother and a Portuguese father and in the driving rain off the cool Atlantic coast, it took on a purplish hue most noticeable around points of tension. Knees, elbows, lips, and knuckles were most affected. Gripping the plastic shopping bag filled with yogurt tubes, sandwich bread, and chocolate milk, the staples of her children’s diet, her knuckles screamed at her. The tension created pale mottles within the violet, and she could see each tendon as it spanned the back of her hand.

Daniel Rayson, MD

Daniel Rayson, MD

It was roughly an hour since she had disconnected Vera Duggar from the intravenous pamidronate that was meant to protect her breast cancer–riddled bones from further damage. Both nurses got on well with each other despite the generations separating them. Vera was a neonatal intensive care nurse emeritus. Now 78 years old, she had spent more than half her life caring for premature babies who should have never lived to see their own kids playing after school. In her line of work, when miracles didn’t happen, it was clear for all to see and the end was quick and complete. She knew no miracles awaited her and was intermittently frustrated at the time it was taking for this to be declared to everyone around her. Why was it taking so long?

“I’m getting tired of this, my dear,” she sighed in her persistent Yorkshire accent, now 55 years since leaving the United Kingdom.

“Tired of what exactly?” Kari asked.

“Oh, these trips to the hospital every 4 weeks, the pills and potions meant to keep me upright and comfortable, the fuss surrounding my every ache. I’m 78 you know; aren’t I allowed to have pain without needing a scan to check on the cancer or a change in medication? Who at 78 doesn’t have some pain from time to time? Don’t all us old people hurt?”

Kari smiled deeply and held on to her arm a little longer than usual while checking the intravenous site. She knew the incredible support that Vera had from those around her, a battalion of equally strong-minded, hard-working women who took turns driving her back and forth from the cancer center. She was aware that her every move was being watched and took extra care to make sure that the intravenous tubing ran a straight line from the clear bag of liquid to the back of her hand. She had cross-checked Vera’s name with the planned medication three times and had a trusted colleague confirm that the right drug was going into the right Vera.

“All you have to do is not complain about it and no one would be the wiser,” Kari offered.

“How can I do that when every grimace or grunt is hovered over? Sometimes I say I hurt just to let my doctors think they are doing something.”

It had been almost 4 years since the first real pain she had ever experienced declared the return of the breast cancer that a mastectomy was supposed to have rid her of 12 years before. At the time, she was told the cancer was small and the lymph nodes were clear, and that tamoxifen for 5 years would prevent it from returning.

She had difficulty believing how a pill could help, given her conviction that cancer, once invited to visit, never left. The return of the disease vindicated her suspicions. She had continued to agree to her physician’s suggestions, not because she thought he was right, but in the hope that cancer medicine had progressed at a pace similar to the advances that she had witnessed over her time in the neonatal intensive care unit.

“When I started my training, patients didn’t have bone-protector medicines and different treatments to try and keep things stable,” Kari replied.

“I know, dear, but the end is the same isn’t it? The pace might have changed, the timelines are longer, but the end is what counts and I know it is coming closer. I’m not afraid you know.”

Kari felt her eyes fill in response to this unequivocal statement. The images of a number of other patients filed quickly through her mind. All had been like Vera once; disease stabilized, symptoms controlled, and adverse effects managed, but they were all gone. Some left after a prolonged series of increasingly chaotic and painful complications and others just didn’t show up for their next scheduled treatment.

Shadows of Previous Patients

Over the past few years, images would appear to her abruptly without obvious triggers. Walking into movie theaters or down grocery aisles, there would be times when she would have to slow her pace so as not to walk through the shadows of previous patients. The sight of a father with his blue-eyed giggling daughter bouncing on his shoulders, fingers gripping his hair, sends a memory shiver of a similar pale young man with eyes quietly closed as the clear liquid trying to control his disease coursed through his veins. An older couple, scrambling for change to buy a lottery ticket at the convenience store, conjures the image of equally weathered faces resting quietly in the oversized chemotherapy unit chairs waiting for treatment, waiting for hope, waiting for comfort. A young woman running to catch her bus brings tears at the reminder of another young woman who just last week ran out of time.

She would occasionally catch others’ eyes in transit, fighting waves of nausea that accompanied the certainty that they were all dying but just didn’t know it yet. Her sense that everyone would be ambushed by cancer became increasingly entrenched, unresponsive to collegial chatter. Over time her colleagues’ voices became irritants, their stress-releasing laughter an insult to all the dying and the ones who were inevitably to follow. The physicians were worse with their generic chemotherapy orders, sometimes written so sloppily it was clear even they didn’t believe in the stuff. And the pharmacists were intolerable, constantly hovering over each milligram and minute as if it made any difference at all.

“Don’t pay me any mind, dear. I’m not ungrateful, just mystified at the amount of effort and expense that is going into prolonging the life of an old woman who is ready to die. Don’t you think when your time comes, you’ll be ready to go after everything you’ve seen?”

Kari gently disconnected Vera from the intravenous tubing and watched her slowly shuffle out of the chair toward the elevator.

“See you next month, Vera,” she called out.

“Yes, maybe you will…but I hope not. Thank you, dear.”

Gently placing the plastic grocery bags on the wet pavement, the damp pockets of her jeans frustrated her bony fingers grasping for the keys buried deep within. She locked and unlocked the doors twice before the trunk finally unlatched. She could see her pulse through the tension on the undersurface of her wrist as she heaved the heavy bags into the trunk. Once it slammed shut, she slid into the front seat and gripped the steering wheel before starting the car. Her knuckles nauseated her and she noted that her hands looked quite similar to Vera’s, her last patient of the afternoon.

“Yes, I guess in the end it’s all the same, ready or not,” she whispered to the empty car. Her head pushed back hard against the headrest and she gripped the wheel until her knuckles blanched white. ■