Away from Home

During her initial fight against cancer, Mara quickly became a household name in Puerto Rico. At the age of 18 she developed an aggressive form of head and neck cancer and received several rounds of surgery, radiation, and chemotherapy. She came to our hospital two years ago for definitive surgical resection and reconstruction which was deemed a success. She was then seen on a local television show talking about her cancer course, treatment, and the near full recovery. We were referred to as “the American hospital with miraculous cancer cure.”

Unfortunately Mara's cancer relapsed shortly after, and she received further treatments in Puerto Rico and the U.S. Although she suffered severe side effects from chemotherapeutic regimens and required a feeding tube for nutrition and medications, her cancer was kept at bay.

But this time it was different: a newly found soft tissue neck mass was encasing the carotid artery and causing significant pain. It appeared that her cancer had returned with a vengeance despite the most recent monoclonal antibody based therapy. Mara was admitted under my care for the third time in two years and our team worked quickly to stabilize her in the stepdown unit. “Mara is too young to die,” the oncologist said. “She is here for the best chemotherapeutic regimen, clinical trials, and advanced surgical technique; we have done it before, and we have to do it again.”

On a cold and stormy winter day we had our first family meeting. The oncologist and I gathered up all the courage to tell Mara and her parents, through a Spanish translator, that the cancer was incurable at this stage, and that significant side effects of the only available chemotherapeutic regimen might outweigh its advertised 5% to 10% response rate. Throughout the meeting, Mara held her head down and did not say a word: her cancer was causing significant upper airway secretions and difficulty speaking. She was only comfortable in such a head down position. Tears in her eyes, she wrote, “How long do I have to live?” I was speechless too; she had just turned 21 years old.

“Can you make my pain go away and my breathing better?” she asked. I suspected airway edema and superior vena cava syndrome and prescribed intravenous dexamethasone and opiates. Nonetheless, that night Mara lost her airway and suffered respiratory arrest. She was emergently intubated and taken to the intensive care unit. Over the next three weeks, she received mechanical ventilation, tracheotomy, and antibiotics for ventilator-associated pneumonia. Her devoted mother stayed with her at the bedside: “I have been through this for more than two years!”

However, Mara's cancer was more troublesome now: it had invaded her cervical vertebrae and spine canal, her carotid body, and vital neck blood vessels, causing significant radiculopathy, alternating tachycardia and bradycardia, and simultaneous thrombosis and bleeding. Eventually she was stabilized and transferred back to my service on a ventilator and a patient-controlled pain pump delivering high dose intravenous opiates.

Mara did not wish for additional chemotherapy. Weeping quietly, her mother said, “I love you so much Mara and I cannot let you die—you must do chemotherapy for me!”

Many conversations between Mara, her family, our team, and the palliative care consult team followed. Mara couldn't speak because of the tracheotomy and secretions, so she wrote (or texted on her cell phone):

“Why am I having this pain? It bothers me very much and I cannot go to sleep.”

“Will my breathing get better? Will I be able to get off the machine?”

“If there is no more treatment, can I go home?”

“Can I go to the pediatric floor I was on last time? I like their rooms and television channels better.”

We could not wean Mara off the ventilator or high dose intravenous opiates. She was not stable enough to be sent home or to the pediatric floor because of suctioning requirements. Her cancer grew rapidly, leading to increased airway edema and episodes of sentinel bleeding, and there were signs of spinal cord compression. Worst of all, she became more and more depressed and anxious as time passed. Fortunately, no additional chemotherapy was given.

I walked into her room on a quiet weekend and found her playing with her cell phone. Her mother was at the bedside, translating. “Do you like iPhone?” I asked.

“Yes, I am chatting with my best friend, Laura, from Puerto Rico, on Facebook—I miss her, and my brothers and sisters.”

Despite rotating opiates and adding nonpharmacologic modalities, Mara still experienced significant breakthrough pain and anxiety requiring bolus of sedating opiates and anxiolytics. “If I have to die, please let me die during sleep, without pain and difficulty breathing,” she requested. “It is all right to give me more medications.”

Mara's friend Laura flew in from Puerto Rico with the help of international funds from our hospital. Those days were Mara's happiest in the time I had known her. I could see shining sparkles in her eyes when the two were together.

Almost three months into her hospitalization Mara was asleep most of the time on the ventilator. She suffered many complications of progressive cancer and side effects of high dose opiates. We held numerous discussions with her parents about palliative sedation and the discontinuation of tube feeding and the ventilator. The palliative care consultants recommended against prolonging the dying process. Paradoxically, I observed that the ventilator had comforting effects on Mara, easing her shortness of breath even though it was invasive and painful. I asked her parents whether they would take her off the ventilator.

“We cannot remove the ventilator to make her die. She still wakes up and talks to us,” the parents said.

We all sat in silence. In this small corner of the world, the only sound was of the rhythmic air movement through the endotracheal tube; then there was Mara.

“Mom and dad, I love you so much, but it is too long, please let me go,” Mara woke up one day and wrote. Already grieving, Mara's parents went to a private room and emerged from behind the closed door an hour later: “We would like to do it this weekend after Mara's brothers and sisters come,” her mother informed us in a surprisingly calm and relieved tone.

The weekend was only two days away so we scrambled to set things up for Mara's terminal extubation. The hospital ethics committee had approved it and all of the paperwork was done.

It was Saturday morning, and our small unit started to fill with people from around the world. There was the playful sister still in middle school, the old and fragile uncle from Texas, the high school classmate who flew in from the Caribbean, so on and so forth. Even a news reporter came from Puerto Rico, but the family immediately sent him away.

Mara, in a state of deep sedation with occasional eye fluttering, suddenly woke up and whispered with her lips, “Estoy en casa?” (Am I home?) “Estás en casa Mara, estás en casa” (You are home Mara, you are home), her mother responded.

It was 6:30 p.m., the Mass was over, and the pastor had gone. Surrounded by over 30 family members, friends, and medical personnel, Mara's ventilator was disconnected. The nurse administered additional doses of lorazepam and hydromorphone before she wheeled off the machine. Mara was free, and she was peaceful.

The clock struck midnight. Mara's breathing was shallow and slow. Her eyes and lips were closed. Covered was the visible ugly tumor around her tracheostomy site and exposed was the small grin on her almost Cushingnoid face.

Mara died 2000 miles away from her native soil. She was not able to go home; instead her home came to her.

I think of Mara now whenever I need to call a translator for my patient: “Where is your home? What is your home like?” Palliation without borders, I dream of the Holy Grail.