part0038

Postoperatively, Oona healed quickly, and from a surgical standpoint, the debulking operation was a success. I wondered how Oona’s definition of success aligned with that of the surgeon. I never asked her. The gynecologic oncologists insisted that Oona involve the palliative care team again. She reluctantly agreed to call if the pain flared. A few months elapsed before the outreach team was asked to see Oona for recurring abdominal discomfort. It must have been fate, because I was on call for the community.

At their home, Carlos greeted me apprehensively, looking fatigued, but determined not to show it. “Oona has some tummy pain. We had Chinese food last night. I suspect it didn’t agree with her, that’s all,„ he commented as he led the way upstairs to the bedroom. Oona was lying down. Despite her elegant dressing gown and meticulous make-up, she looked uncomfortable. I prayed that I’d be able to help and that it was not what I feared – a progression of her disease. Clinically I felt that she had a partial bowel obstruction. Carlos disagreed: “Listen, doc, all she needs is some pain meds. No tests, no hospital, just medication. Can you do that?„

I explained, “It would be very helpful to have some blood work and X-rays to sort out what is causing the pain.„ Somehow Oona found the strength to forcefully shake her head no. She did have bowel sounds and had passed some stool, so we had time. I knew that it was not “good medicine„ to give pain medication without a diagnosis, but I also felt that I was going to have to live with it. I implored Carlos to notify me immediately if Oona’s condition deteriorated. The pain medication eased her furrowed brow. Oona was seeing the gynecologic oncologist in a few days. I remember worrying that he would think I was a “bad doctor„ for treating the patient without the proper work-up. My “community consult„ concluded, but my concerns about Oona did not recede.

A few months passed before our paths crossed again. This time, Oona had taken a turn for the worse. She had been experiencing back pain and leg weakness for a couple of weeks. Oona decided to only tell her herbalist, who informed her that he anticipated this outcome. Her symptoms, he explained, were a result of the compounds he had given her to break down the remaining cancer and now her body was washing it out of her system. So Oona took these signs of spinal cord compression as a good thing and not as the ominous warning of impending disaster.

It was not until she became paralyzed that Carlos took her to the hospital. By then it was too late. Oona received emergency radiation therapy and when she did not respond, she received surgery for decompression. Oona was then transferred to the palliative care unit. Oona had agreed to the transfer, as she had regarded the unit in the past as “a safe and quiet environment to recuperate.„ She also believed it was a temporary measure. Oona was convinced she would walk again. And so was Carlos. I attempted to be honest without destroying hope.

After a few weeks of being on the unit, and not gaining any strength in her legs, I began to notice that Oona’s words of determination were the same, but her voice had a growing echo of doubt. The stronger her doubt became, the more Carlos responded in his role of cheerleader. One Saturday, he took Oona on a day pass to the park to watch the rollerbladers. He intended to inspire her to walk and yes, eventually get on rollerblades. When Oona returned from that outing, she seemed to have aged 10 years in 10 hours.

Carlos was not ready to hear, let alone accept, Oona’s change of heart. He felt that she was just tired and insisted that we promote a more positive attitude regarding the future and her ability to walk. As Oona became more lethargic and confused, Carlos insisted it was the result of the pain medication and that it be decreased. I was beside myself. Oona needed the pain medication. Her symptoms were due to progression of the disease, and not just the result of medications. Carlos did not want further tests for fear of what they might show. In contrast, Oona was starting to acknowledge that she would never walk again.

During her time on the palliative care unit, my role changed from being in charge of the inpatient unit to being solely focused on community consults. I was no longer primarily responsible for Oona’s care. I told myself that it would not make a difference. I would still see her and be involved. It felt so awkward though. When I would think of something that might help, I couldn’t just write an order. I was feeling out of control. During this time, Oona deteriorated. She finally agreed to some tests, which confirmed that the cancer had spread to her brain and liver.

Suddenly Carlos’ attitude changed completely, and he only wanted Oona to be comfortable. As Oona became aware of this shift in Carlos, it caused her to become agitated. Sitting quietly with Oona one night, she began to share her mounting fears. “Carlos has given up hope,„ she said. “We believed together in the miracle – I was going to beat cancer. But now I am alone in this.„ Oona paused, then her voice changed. “He won’t take me home, you know. He’s cast me off!„ She turned to face the window. I stole a glimpse at her reflection just as the tear she was trying to conceal slid over her gaunt cheekbone.

“He’ll be upset for a while after I’m gone, but he’ll carry on. He’ll find someone to fill the void. I’ll be replaced and life will go on.„ The dam holding back the tears finally gave way, and they streamed down. Without reservation, she sobbed until her frail frame was spent. Throughout all this, I sat silent, holding her hand. She looked up and admitted, “It’s driving me crazy to think these thoughts, but when I’m alone in here I can’t help it – my mind imagines a future without me in it.„

Two days before dying, Oona insisted on going to physiotherapy. She was sleeping 20 hours a day now, and her well-seen skeleton wore only pale and dry skin. It was as though all the muscle and fat had evaporated. Yet she endured being positioned onto the exercise bicycle, and pedaled slowly for less than a minute. The staff fought back tears. Part of me felt ripped apart watching this, and part of me understood completely. Yes, death was inevitable, but she didn’t have to like it or get used to it. Why should she? She had suffered many hardships and had always transformed disadvantage into advantage. She had never hurt anyone and had worked hard to raise her family and be a good teacher and take care of herself. She respected and loved life, and her actions lived up to her beliefs. So why should she lay down peacefully and accept this? For whose benefit would it be? More likely it would be for the people who were uncomfortable watching her struggle. But Oona had to die for Oona, and not for others.

Oona, you taught me so much. You taught me not to be afraid to fight for what you believe in, even when others disagree. Not to bow down to certainty, because no one can predict the future. You had a year of life that you would not have had if you would have listened to the majority and not had the surgery. You taught me not to define for others what is or is not palliative care, but to listen, both actively and compassionately. You taught me not to be afraid to accompany someone on their journey with suffering and never to be bold enough to think that I know what is best for someone else.

I went to Oona’s memorial service. I don’t go to many, but I do go to some. They are chosen selfishly, for my sense of closure and for my own peace. People always ask me how I can possibly do what I do. I smile to myself and think that I have the best job in the world. I am in a sacred and privileged position to learn about life from people who have had to do a lot more living and struggling than I. They give so much more to me than I can ever give to them. I hope that I have the strength to use this knowledge wisely and to share it whenever I can.