This is the fourth article in series that focuses on your rights as a patient—both inside the hospital and out. Previously, we’ve explored the Patient’s Bill of Rights, informed consent, and medical sherpas. In this article, cancer survivor Grazyna Klim explains how she became her own healthcare advocate—and offers tips for how you can, too.
In January 2015, Grazyna Klim was a busy neonatal intensive care (NICU) nurse in New Jersey. She was healthy, vibrant and had a job and a life she loved. There was just this one, little thing—a familiar, scratchy feeling on the right side of her throat, near her tonsils.
She’d had that feeling for about six months, but dismissed it as a tonsil stone—a pebble-like growth that forms when food or other particles get stuck near the tonsils. After her efforts to dislodge it failed, she ignored it and went on with her life—until a training exercise at work sent her to the ER.
Doctors did an MRI, CT scan and several other tests. All came back normal. Klim felt better and went back to work.
But she wasn’t better. She still had that scratchy feeling in her throat. Determined to get to the bottom of it, she got a flashlight and mirror and looked inside her mouth. Her right tonsil was grossly enlarged. She called an ear, nose and throat specialist (ENT).
"He looks at my throat, moves the flashlight from right to left, and says, ‘This looks good,’ and prescribes antacids for what he said was ‘silent reflux,’" Klim recalls. " I thought, ‘Wait a minute. Something’s not right. My right tonsil is extremely swollen. How come he didn’t see this?"
Sugar-coating the problem?
Klim went home and began taking the medications. But they weren’t working, so she went back to the ENT for a biopsy of her swollen tonsil. A few days later, he called Klim to tell her what she already knew. "I remember it like it was yesterday. He said, ‘You were right. It’s cancer. Stage 2.’"
The doctor sent Klim to see an oncologist who specialized in head and neck cancers. But when she walked into the doctor’s office, Klim immediately was alarmed. "All I see when I walk in is a humongous bowl of Milky Ways. I look at this bowl and I go, ‘Are you kidding me? I’m a cancer patient, and you offer me candy? Everyone knows cancer feeds on sugar. It’s all over the Internet."
"I thought, ‘Why would you give me sugar, then give me chemo? Then give me more sugar, so you can give me more chemo … then send me home to die?’"
But what concerned Klim even more than the candy bowl was the oncologist’s recommended treatment regimen: eight weeks of low-grade chemo that would require her to take a year off from work and drastically alter her quality of life.
"He told me the radiation would burn up my throat. He said my saliva would dry up and that I’d probably develop mouth sores," Klim remembers. "He said I’d be in excruciating pain, and even medications wouldn’t help. He said that there was the possibility I’d end up on a feeding tube for life. Then, he said, ‘But you’re young. You can take it. It’s the way to go.’ And I said, ‘It’s not the way to go.’ I thanked him for his time and left."
How she found an alternative to chemo
For Klim, that doctor’s visit was a call to action. She joined online social sites to talk to people who had already undergone the regimen her doctor had suggested. "Two and three years later, they were still having problems. I was beside myself. There had to be other options available," she says.
At her husband’s suggestion, she began to research proton therapy. It’s a technique that uses positively charged particles—protons—to draw oxygen to the cancerous tumor. Unlike traditional radiation, it zeroes in only on the tumor, preserving the organs and tissues that surround it.At the time, was only offered at three clinics in the U.S.—one in Seattle, one in Oklahoma, and another in New Jersey—just 25 minutes away from Klim’s house. Now, it's available in 20+ locations.
She made an appointment with the oncologist there. He explained that she’d need to have the therapy five days a week for seven weeks, but that the side effects would be minimal.
He was right. "I worked during my treatment," Klim says." I worked until the last day of my treatment. Sure, I was scared. I’m not a hero—I had my moments. But no one knew I was in treatment except my nurse manager."
Today, Klim still works part-time as a NICU nurse. But she’s also found what she considers her life mission as a result of her ordeal. She’s a patient advocate who speaks to groups about wellness and prevention—and the importance of taking charge of their healthcare. "I turned a bad experience into a wonderful thing to help others," she says.
Here, Klim offers the following five tips on how you can be your own best healthcare advocate (or advocate for a loved one) during a health crisis:
- Feel the fear—and then get to work. "No one cares about your health and well-being except you," Klim says. "You have to be your own advocate. This is the time to stop being afraid."
- Research all the facts about your condition. "Research, research, research—but know you can’t believe everything you read online. I watch webinars, I go to seminars, I ask questions … I watch videos, I ask questions. I ask so many questions until people say, ‘Get the hell out of my face.’"
- Be persistent. "It doesn’t matter if you have a cold or cancer," Klim says. "Keep going until you find the right information. If you have cancer, you’ve already had it. It’s not gonna kill you in an hour or in a few days. Give yourself time to be your own advocate."
- Trust your gut. Klim recalls the time the first oncologist she visited pressured her to have chemo. "He told me if I didn’t get the treatment, I would die. I was beside myself. Their scare tactics are crazy. Some doctors prey on scared, vulnerable people—but there are other options."
- Understand that advocating for your health is a lifelong process. Klim has been cancer-free since January 2015, but she knows she has to do maintenance work to make sure she stays that way. "The tumor’s gone. Now is when the real work starts. Get rid of sugar—that’s a must. Eat clean—lots of fruits and vegetables, and stay hydrated. That’s very important."
In our next and final article in this series on patients’ rights, we’ll show you how to find out if your doctor has ever been sued for and found guilty of malpractice—and what you can do about it.
