Welcome to the Patient's Voice

Discussing the good, bad and ugly experiences patients face in healthcare today.

Tuesday, May 10, 2011

I'm no expert.

My name is Chelsea, and I'm not an expert. At least not in the medical field. I went to school to become a licensed Massage Therapist, I did well in science in college, and I've had my share of health problems, so I'm not totally ignorant to the way the body works and how to fix it when something goes wrong. I can't say, though, that anyone is ever prepared for their mom to have as many health problems as mine has had (many of them secondary issues caused by Lupus,) and then to be diagnosed with cervical cancer.

My mom did the right thing. She hadn't been to the OB in a long time, because she'd taken care of me and my Nana. I began having seizures in 5th grade, was finally diagnosed a few years later, and was weaned off medication in my mid teens. At the same time, my grandmother was suffering from heart problems. There was a time when my mom was literally sitting in between my grandmother, who was having a heart attack, and me, having a seizure. Then, after the three of us moved into a beautiful house together, Nana was diagnosed with small cell lung cancer. So, you can see why taking care of her own personal health wasn't my mom's top priority - until she had a heart attack after her mom passed away. (That's a story for a different day, titled "How My Mom Stopped Smoking Cold Turkey.") She began going to the doctor regularly, found out she has type 2 diabetes, and began eating accordingly, exercising on a regular basis, and being the patient every doctor wants. I was so proud of her!

Nana and me.

To continue the trend of taking better care of herself, she made an appointment for a well woman exam. The doctor saw something, but assured her it wasn't cancer. Obviously, he was wrong. I went into "taking care of business" mode, like I do in most emergency or stressful situations. We went to every appointment together, then every treatment. The treatment was intense - 6 weeks of chemo assisted radiation, where, you guessed it, they give them both during the same time period. I learned that there are as many combinations and types of chemo and radiation as there are flavors of Jelly Bellies. I learned that ginger ale can be a miracle, and that my mom really does have that much hair. (She lost half of it during treatment, and you could barely even tell.)

Mom walking me down the aisle. After the wedding, I donated my hair to Locks of Love,
and she donated hers to chemo.

I also learned that I will speak up for myself and my family when it comes to their well being, no matter how high up in rank that person is - or thinks they are. I calmly and respectfully called the radiologist a liar when he insisted he told us one thing when he told us another. I wrote a long letter to the Quality Care department explaining that the radiologist was only at half the appointments, and that his PA was either too busy or not qualified to stand in for him. I explained that my mother didn't even know that she should have seen a social worker until her last day of treatment, at which point it was too late for her to receive any benefits. I recounted the times we were lied to, ignored, and mistreated. I praised the radiology nurses and techs and the chemo team, who were all kind, compassionate, and funny. I praised the oncologist, who carried a rolodex of all her patients in her pocket and made phone calls after hours to check on them. And you know what? I saw results. Suddenly, there were a bunch of very concerned people who had read my letter. Suddenly, people were being "reassigned."

I'm no expert, but you don't need to be to stand up for what's right. It helps to educate yourself and ask questions, because other people won't always do it for you, but you don't have to know everything. You just have to care. You just have to make your voice heard, because you may be the only one speaking for hundreds who can't speak for themselves.

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