A breast cancer survivor shares her experiences with the BRCA gene.

Tuesday, April 22, 2008

Hear Me Roar

Once upon a time, there was a doormat. Everyone walked and stomped on top of her. But then she got breast cancer and had to fight for her life. This meant battling lots of snotty-nosed employees in hospitals, labs and doctors' offices. But along the journey, she found her voice and made it heard. And now she won't shut up. The End.

When you become a professional patient as I, you come into contact with all kinds of personnel in the medical field. What I've observed from my vast experience during these past 7 years -- which has included 4 major hospitals, more than 10 physicians' practices, and too many healthcare labs, pharmacies, insurance companies and parking lot attendees to count -- I'd like to pass along to you.

For the most part, doctors and nurses and other healthcare professionals show compassion toward patients. Every now and then, you come across a Witch Doctor, but all in all, I've been fortunate to be under the care of amazing people who love their work and are genuinely concerned about the patients they serve. That's why many say they entered the medical field in the first place -- because they wanted to spend their lives caring for others.

And then...there's another group who could care less about humanity. They are known as"office staff." They choose their line of work because it offers convenient hours or is close to home or provides benefits or assigns easy tasks that are not too taxing on the mind. Patient care is not their forte -- nor do they want it to be.

The reason I bring this to your attention is because it is often the office staff who ends up playing a critical role in your care -- as they control scheduling, passing along information, helping with insurance issues and keeping track of your medical records.

A doctor can be the best in his or her field, but if their office staff is incompetent, you've got a problem. A big problem.

When I first found a lump in my breast, I followed up with a mammogram 2 weeks later. Nothing out of the ordinary appeared on the mammogram, but because there was definitely a lump, I was told I needed ultrasound.

That required going through my physician's office for another referral and scheduling. The challenge was, I could never talk to my physician directly. He was too busy. The only person I had contact with was his office manager, who relayed my information back and forth between the doctor and me. I was so naive.

The office manager assured me that my doctor didn't think there was cause for concern, and the soonest she could schedule an ultrasound was 2 weeks later. When I pushed for an earlier date, she wouldn't budge.

Two weeks passed and I had the ultrasound, which showed a mass. Then, I was told I needed a biopsy. Back to my doctors' office, where I dealt with The Office Queen. Again, she was in charge of the referral for a surgeon. And, of course, the soonest the surgeon could see me was 2 weeks later. Another wait.

From the time I found my lump to the time it was biopsied and found to be malignant (stage 3, to be precise), it had been a time span of over 6 weeks.

You are probably wondering why I let this go on for so long and didn't demand better service. Like I said, I had never had to deal with doctors' offices and labs on this level before, so I didn't know what to expect. But when I was told that I had an "aggressive form of cancer" and that it had spread rapidly -- in a period of a few months -- I got angry. Very angry. There was no telling how much the 6-week wait cost me in terms of my cancer's advancement.

Anger brought out my voice. And, believe me, every office employee has heard it ever since. Don't get me wrong. There are some nice people out there. In fact, I am quick to speak up about those who go above and beyond by writing letters of praise to hospital CEOs and physicians. I've even sent cards and presents. Because when you are vulnerable, you are truly grateful for their help and kindness.

At the same time, I also don't accept mediocrity when it comes to my health. And that's what, most recently, Irene had to learn.

Irene was the executive assistant to one of my surgeons. She ran a tight office, I could tell. But she knew nothing about patient care. I discovered this the day of my pre-op, when my physician's orders had not arrived at the lab, resulting in confusion and problems that I won't go into. I called Irene to let her know about the mixup. She ripped into me.

At this point, I had not eaten or even had a sip of water for hours on end. I had had a lot of blood drawn. I was tired and nervous and extremely thirsty. Nasty Irene sent me completely over the edge. There I stood, bawling...in front of my mom, the nurses and an entire waiting room of strangers.

When I reached my surgeon's nurse and told her the situation, she immediately resolved it and conveyed her apologies. Something Irene could have easily done herself. Furthermore, I found out that Irene was mean to other patients...but their weren't speaking up and complaining.

Well, Irene. In journalism school, they say, "The editor always has the last word," and Irene didn't know who she was dealing with. I wrote a speech. I wrote a treatise. I wrote Beowolf II.

I told my surgeon that Irene was a disadvantage to his marvelous practice. That she shouldn't be working in a place that required patient contact. People like Irene should be working at a company that didn't care about customer service at all -- like an airline, for example. Anywhere, I said, but a doctors' office.

So, there, Irene! Take that!

Unfortunately, I wrote the letter before I found out that I was going to have to have a second operation...with the same surgeon. Which meant I would have to deal with Irene again.

Nevertheless, I will continue to speak up and speak out. So, watch out, Irene...and everyone else who messes with me. Because breast cancer teaches you to be appreciative, but also to roar when you need to.

1 comment:

frog girl said...

Roar on, Cowardly Lioness. Shine on, too. I hope all the Irenes are listening out there....