In documenting Arlinda's medical journey, there were many times that bureaucracy got in the way of her care. It was frustrating and harrowing for us. I chose to cut this scene, because belaboring the point of medical racism may have caused the reader to close the book on her story. I have included it for you to experience on its own:

There was much to do during this hospital trip, two days before the chemotherapy was to begin again. It was an exhausting blur of endless tasks, a hospital marathon that tested both their patience and Arlinda’s dwindling strength. They began at the Oncology department on the seventh floor, hoping to secure a much-needed prescription for Dilaudid. Rob had left messages for the past two days, but when they arrived, the nurses informed them that Dr. Yee had not been available for two days, busy teaching a class, and the only other doctor who could write prescriptions was on vacation. Arlinda’s pill bottle was already down to the last 100 tablets, which seemed like a lot, but at 16 pills a day, the supply was rapidly dwindling. There was no resolution in sight, no help to be found, and the frustration grew.

After not making any progress with the prescription at the Oncology Department, their itinerary led them down to the first floor to get the biopsy on Arlinda’s neck. The reception notified the couple that Arlinda’s insurance had expired. Same as last month. Instead of concentrating on getting healthier, this bureaucracy placed more value on the process of bookkeeping than healing a person so they could return to being a productive member of society.

The scavenger hunt led through dimly lit hospital corridors. By the time they approached the insurance office, both of them were worn thin, but Arlinda remained stoic, signing the papers with a quiet exterior. With a fresh insurance policy in hand, they returned to the lab. The techs brought her back to the room for the biopsy, while Rob remained in the waiting room. After about ten minutes, a nurse explained that Arlinda was very nervous about the procedure, and would not be able to see him until it was finished, but she wanted him near her nevertheless. His heart ached knowing how scared she was, lying there under those harsh hospital lights, waiting for them to make the incision in her neck.

They injected her with a local anesthetic, made a small incision in her neck to take out a sample of the lipoma for biopsy. The tech took the sample to the lab for testing. In about fifteen minutes the results came back negative. The surgeon removed the rest of the lipoma.

Shortly after it was removed, Arlinda opened the lab door and saw Rob sitting, reading David Servan-Schreiber’s book, Anticancer: A New Way of Life. He was reading about the cancer studies performed on mice. One subject, Mouse Number 6, rejected the cancer that was injected into his belly. Even a dosage of cancer cells equaling half his weight could not infect this mouse.^ The story gave Rob great hope that there is always a chance of beating a cancer diagnosis.

From there, they trekked up one elevator, crossed to the other elevator bank, and descended to the infusion lab on the second floor. Nurse Waselat had a bed ready for Arlinda in the morning, slipping the patient the prescriptions and lab slips with a caring gesture.

They moved from floor to floor, each stop another stamp of the bingo card, ending, at last, in the pharmacy. Three hours ticked by as they waited for the prescription to be ready.

By the time they made it home, her body was emptied. She lay quiet as Rob smoothed lotion over her aching skin, his touch a balm to the fire within. No remedy could fully vanquish the pain; all they could manage was a gentle simmering, enough to see her through the night.

They hugged goodbye—a real hug, not a church hug. An embrace so tight he could feel her heart vigorously pounding against his chest, a steady, intimate rhythm that seemed to sync with his own heartbeat. The thumping was tender, almost soothing, yet filled with an unmistakable intensity. Only two things could make a heart pound so hard: Fear and love. She felt both. They both did. They knew the journey they were on. It was that small, unlikely hope of survival that kept them going. No matter what, he committed to be by her side every step of the way.

Gazing into her eyes, he desperately wished for a different reality to unfold before them. Surely, this relentless pain could not overpower her spirit so quickly, not after she had triumphed over esophageal cancer just months before.

He told her, “I am here for you. We’ll go through this together. When I am not here physically, my spirit will be right by your side.”

“I know. I can feel you’re with me, watching over me.” Her response affirmed the connection that was building between them.

Rob tried to grasp the depth of her suffering, but it seemed impossible. The exact source of her pain was elusive, almost like a cruel mystery they could not solve. Arlinda’s body seemed to betray her. Her brain misfired signals, confusing the doctors as they attempted to pinpoint the cause. Was it the feeding tube? Constipation? Bone cancer?

Week after week they would ask the doctors, desperate for answers, but none came.

^ David Servan-Schreiber MD, PhD, Anti-Cancer: A New Way of Life (New York: Viking Press 2009).