Monday, July 29, 2013

One Nurse's Power

I've written before about how I have a terrible sense of direction and about how sometimes that missing part of my brain can cause me real embarrassment. Last Wednesday was one of those times.

After my labs were drawn (more below) and my Mom and I waited almost an hour for my next appointment up on Yawkey 9, a nurse took my vitals and put us into an exam room that we had never been in before. For all of my other appointments with Dr. Bunnell or Danielle I've been in an exam room with a small painting of a blue sky and an orange rooftop that makes me think of a retired persons' neighborhood in Florida. From that room, I know my way back to the waiting area -- right turn and straight out (I think).

We met with Danielle for a solid 45 minutes on Wednesday, discussing all sorts of different things, both mental and physical. When we were done, my Mom and I headed calmly and confidently to my infusion. I took a right, walked straight, and opened the big wooden door in front of me.

Only it wasn't the waiting room. I recognized the space immediately as the consult room where I usually meet my therapy lady. My first thought was, How did they move the consult room to the waiting area? I really scare myself with my own stupidity sometimes.

The worst part was that the consult room wasn't empty. Dr. Fasciano was sitting there (where I usually sit) with a patient (where she usually sits). (Which totally makes me wonder if I've been sitting in the wrong place all along. My goodness, so much embarrassment!) Anyways, they both looked at me with shock and confusion that could only be rivaled by my own parallel expression.

Oops!  I thought this was the waiting room! I exclaimed, looking to the back of the door as if there was a sign to justify my mistake. There was a sign, next to the door, but apparently the "Consult Room" plaque wasn't enough to make me question my sense of direction.

Dr. Fasciano and her patient were both too stunned by the fool (me) to laugh. OK, well, Hi Karen! I said laughing. I'm going now. She smiled and said Bye. 

When she was done with her appointment, my Mom and I were still waiting to be called into the infusion suite. Dr. Fasciano came right over to us and we had a good laugh at the expense of my ridiculousness.

*  *  *

Last Wednesday was a long day at Dana-Farber despite that I didn't even have an appointment with Karen. I knew I was already going to be there for five hours so I decided to delay our meeting until next time. 

The day began a few hours later than usual -- at 9:30am -- at the lab on the second floor. Every few months now, my oncology team has the nurses in the lab draw blood to be sure that it contains whatever it's supposed to contain. It's a really easy part of my treatment so I didn't have any apprehension about it. 

When the cheerful, middle-aged nurse (who I will call "Elaine") called out Tara S, I told my Mom I'd be right back. When I emerged from the back 10 minutes later, I was a mess. What in the world happened back there in such a short time? you may ask. My Mom asked the same thing.  

Elaine was very kind. She was talkative and good natured and meant well. But Elaine had one fatal flaw -- she didn't understand her own power.

When I sat down and she looked at my chart, she asked me, So how many do you have left? 

I'm done at the end of October, I explained, and even though that sounds far away, given the three week increments, it means only about six more treatments. 

Wow! That's so exciting! Congratulations! You must be so happy! 

Yes, I am. But it's scary, too. It hard to think about being without the Herceptin. 

Oh, why's that? 

I don't know. I guess just because I really don't want the cancer to come back and it seems that the Herceptin is the key to making sure it doesn't.  

I know, that is scary. It's scary to think about what you've had to put into your body. I mean, it's all poison and the chemo can do real harm down the road. I've seen many cases of that. But what's the alternative? 

I froze. She chattered on while she inserted my IV and drew six or seven vials of my blood. As she stuck the little printed labels of my information onto each vial, I watched her. I didn't hear her, although she was still talking. I was a ghost again; my body in the chair and my arm extended but my mind somewhere else. Somewhere far away. Terrified and defeated. 

I held it together (barely) because I had an errand to run. But while we were in the Friends' Place donating the wig I never wore, I broke down and told my Mom what Elaine had said. My Mom felt so bad but I was too upset to feel bad that she felt bad.

When we left the little shop and got to the foyer on the first floor, my Mom hugged me and apologized for what Elaine had said. I explained to her how scared I am that the Herceptin will end up being toxic to my heart or that there could be some other terrible side effect that they discover years down the road that will land me back in treatment. Herceptin is so new, I argued from my dark place that I go to only very rarely. They don't know what it could really do to people! 

My Mom didn't argue, but she did explain that she thinks they do understand the biology of Herceptin. Then she said something even more helpful. Hon, I could walk outside right now and get hit by a car. None of us know what's going to happen tomorrow. 

I know, this really isn't something that I'd expect to bring me comfort, either. But it did; a real sincere comfort. I've wondered why that was, especially since if I really thought about it, my Mom being hit by a car would send me into a mental tailspin. But I didn't really think about it. I just felt better. Later, I decided that was because my Mom had reminded me that I'm not alone in my vulnerability. And I think that the feeling of being alone is the scariest feeling of all.

*  *  *

I know that people like clean and happy endings; I love romantic comedies starring Hugh Grant, too. So I know that Elaine and everyone else, including me, wants the end of my infusions to feel like pure victory. Sometimes, I'm sure it will. But I just don't think the story -- any story -- is all that simple.

A few weeks ago, Andy forwarded me a New York Times article about how anxiety lingers long after cancer treatment has ended. Not that I want anyone else to feel the lingering anxiety that I feel, but I have to admit that it's comforting to know that they do.

I wonder if Elaine has read this article. I wonder if she knows the power that she holds as she sits there tapping patients' arms to find their best vein. I'm not saying her job is easy because it's not. Anyone who works with vulnerable populations -- patients, kids, the mentally or physically disabled, the elderly, the poor -- they hold more power in their hands than the CEO of Wal-Mart, at least in my humble opinion.

Because those people have the power to give someone hope or give them doubt. And when you're feeling weak and vulnerable and scared, I don't know what is more valuable than hope or what is more scary than doubt.

I know very well that what Elaine said was true. I know Robin Roberts' story and that my chemo could cause me more cancer down the line. I have met several woman now who were treated for lymphoma years ago and as a result of their treatment have battled breast cancer or been forced to take drastic steps to avoid it. I know what Herceptin could do to my heart, even years from now. And I know that there was no alternative to putting my Allies into my body to fight the cancer. But I also know that sometimes, hope is more important than truth. And it would have been a lot easier if Elaine told me that she knows I will be OK even though she doesn't. Or she could have just made small talk about the Red Sox. That'd have been easier too.

Maybe Elaine just slipped up, like I did when I busted in on Dr. Fasciano and her patient. Or maybe she joins a lot of us who sometimes just need a gentle reminder of how powerful our words can really be. 

1 comment:

  1. Wow, Tara...haven't read you in a while. This is a very powerful post. So much to be learned from this. xo

    p.s., your mom rocks.