A Patient Navigator made cancer possible to bear

A Patient Navigator made cancer possible to bear

There are people along the way who make the experience of having cancer possible to bear. Before I became active in my online support group and before I even knew about the Cancer Support Center , I was pretty much stumbling along and bumping into walls.

Early on, in shock, numb and scared, all of my attention was poured into reading and researching. I knew that my next door neighbor, Carrie, did research on cancer at the University of Chicago and she led me to the work of Dr. Gary Steinberg, a bladder cancer researcher and surgeon. As soon as I put his name into Google and started reading, I knew that I needed a second opinion from him. Carrie got me into contact with a patient navigator named Laura, who started walking me through the process.

I have no idea how old Laura is, whether she’s tall, or whether her hair is curly. But, I would instantly know the sound of her voice. It is calm and warm and patient and was the sound of hope back in September. That voice carried me across the desert of managed care one step at a time.

I had never heard of a patient navigator, but I recommend them highly. They do exactly what you’d imagine by helping you navigate the incredibly complex interactions among managed care, medical centers, hospitals, doctors offices, and labs. Getting a hospital in one system to talk to another hospital in a different system requires persistence and a high tolerance for confusion.

In order to get a second opinion, for instance, the slides used by my pathologist at the original hospital needed to get to UC. In my head this meant that I would pick up a box of glass slides, not unlike the ones Dexter keeps in his air conditioner, and deliver them to UC. I was a little bit excited to see them. I was certainly anticipating lots of driving and forms and waiting. But that isn’t what happened at all. In my case, this is what happened: Laura took care of it.

Laura, patient navigator at the University of Chicago Medical Center, was the one person who returned my phone calls, sent detailed, helpful emails, made suggestions and gave a damn when things didn’t work out like I’d planned. When my HMO refused to refer me to Steinberg, I was still determined to go to UC. In a phone call one morning Laura told me that she thought UC might refuse a second opinion without insurance. I was devastated and didn’t get off the phone before sobbing. Laura’s kindness at that moment is something I’ll always remember.

Over the next few weeks, Laura helped clear the path for my slides to be read and for Dr. Steinberg to offer a second opinion. I heard from her the news about the results, which confirmed that my cancer was low grade. There was really no one else I’d rather have heard from at that moment.

Thankfully, there have since been several folks along the way who have offered their kindness at the same time as offering professionalism. Laura has helped me realize that professionalism requires kindness.

 

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