Taking Control by Participating in Care

When Allyne Hammer was 67, she got sick. At first, doctors thought she had mononucleosis. But as Allyne’s health continued to decline, her brother, a physician, encouraged her to see an infectious disease specialist and a hematologist. After several rounds of tests, Allyne got a new diagnosis: Stage 4 lymphoma, an incurable blood cancer. She was also diagnosed with a meningioma brain tumor the size of a golf ball.

 

Allyne went to a neurosurgeon, who told her the tumor must come out right away or she would have seizures. A second neurosurgeon told her to treat the cancer first and then come back to him to remove the tumor. He recommended an experimental drug to fight the cancer.

 

Allyne went to an oncologist and asked for the drug that the neurosurgeon recommended. The oncologist refused. He said it was not protocol. He told Allyne that if she didn’t start chemotherapy she would die and told her how she would die. He gave her a handout to read on chemotherapy and sent her to talk to the oncology nurse.

 

Allyne chose not to do the chemotherapy. She found her way to a clinical trial study at Stanford instead. During the trial, many participants experienced significant side effects. The research team gave them a drug to counteract those side effects. But Allyne reacted to the medicine; her body swelled and she was covered with large itchy rashes. So the doctors gave her another drug. This medicine caused heart palpitations and made Allyne feel like she couldn’t breathe. The doctors decided to remove Allyne from the study.

 

Before leaving, Allyne agreed to a CT scan so there would be a baseline for her cancer. The morning after the CT scan, she woke up paralyzed on the left side of her face. Emergency room doctors told her it was Bell’s Palsy, a reaction to the contrast used in the scan.

 

By this time, Allyne was receiving hospice care in her home. Distressed by everything that was happening to her body, she decided to end all treatment. Allyne said, “If now is my time to die, then I will die. But I will not die this way.” She sent the hospice and visiting nurses home, and prepared for the end of life.

 

 

Allyne did not die. In fact, she began to feel better.

 

After searching extensively, Allyne found a team of doctors who respected her values and priorities and helped her cope with her conditions. When she finally found her current oncologist, she was very straightforward about her needs and beliefs. When she asked him, “Can you hang with my decisions?” he replied: “I believe it’s my job to give you the information and your job to decide what to do.”

 

Seven years after she was first diagnosed in 2009, Allyne lives with incurable neuropathy, incurable lymphedema and Bell’s Palsy, in addition to the lymphoma and brain tumor. She spends her days doing things she loves: going to college, taking tap dancing lessons, practicing Tai Chi, and dancing salsa.

 

Allyne believes it’s important for patients to participate in decisions about their treatment. She said, “Don’t just get on the bus and ride along. Ask questions, gather information, know all your options and participate when medical decisions are made.”