I’m in the private room now, finally out of the waiting room. It’s hot in here. Is the ac broken? Is the heat set too high? I’m thirsty... I wait, I’m eager to get answers, I’m eager to ask my questions, I have a list, I have my paper with all my questions folded in half inside my 8x10 notebook... I wait in the sterile looking room, sitting on a the white paper that is rolled out on the table, the door is closed and I am alone.
I know this doctor, I have had several appointments with her already. But she and I have had trouble communicating with each other in the past. My questions, which seem perfectly rational to me are met by a variety of reactions from her. My doctor is either defensive, or flippant, or overconfident in suggesting I have nothing to worry about and makes me feel as though I have no business asking such questions in the first place.
It’s hot in here. I am thirsty
My doctor came highly recommended by everyone in my community, I was even told she was worth the wait. I am getting tired, but I have my list and I know that by staying focused on my questions I will get the answers I need to proceed with the right treatment for me. She presented me with my options a few weeks ago.
She and I have discussed my concerns with the different courses of treatment in person and over the phone. However, the conversations and her answers to my questions have been so inconsistent that I only get more confused.
I am alone. And I wait.
I am trying to recall all the words I need to say. I have rehearsed everything I want to tell her, crafted in such a way that I am sure not to offend her, but simply to get the direct answers I need. I reread my list of questions for the eighth time. I am trying to keep it together.
I am together, or at least I was when I first arrived. I was focused and ready. Now I am just hot and tired and I feel like I am losing my focus. I am getting more worried and my thoughts are starting to wonder, all the what if’s are starting to creep into my mind. I know I shouldn’t go down that road, it’s a terrible road, “you know nothing Lisa” I tell myself, “what if?” does not matter right now.
I am alone. Never go to a doctor’s appointment alone, I thought I could.
I was armed with my notebook and my list of questions after all. I had talked to my mom, my sisters earlier and I can just call them later with all the new developments. Right?
The door bursts open, a rush of fresher, cooler air fills the room, it shocks me back into the moment. My doctor has my chart open in her hands as if she were just reviewing it. She has a big smile on her face. She closes my chart and congratulates me!! Yup, that’s right. She congratulates me.
She goes on to tell me how great I look, that I am so lucky to have had such minimal side effects from breast cancer and all my treatments. Again, that I look great and she is so happy to declare me healthy and cancer free!! Woo hoo, break open the champagne and celebrate.
I really wish I had a witness for that. I wish I had a video of this moment. I wonder what expression must have been on my face. Crazy.
What the hell just happened?
I felt like I was in an alternate universe and searched for a response. I struggled to find a way to put this appointment back on track. I am supposed to trust this woman to perform surgery on me and I can’t even trust that she can read the notes in my chart.
I told my Doctor “No, that’s not right”. I have not even started treatment yet. I told her that is why I was here, to discuss my options and make a plan. I reminded her of our phone conversation about the different options she gave me.
Do I have a lumpectomy and radiation?
Do I have a single mastectomy?
Do I have a double mastectomy?
What about hormone therapy?
She stared at me for a minute, then got very defensive. Practically yelled at me and then opened the door to yell at one of her assistants. She yelled that there is a problem with my chart, because there isn’t a photograph of me in the chart and that is why she was confused.
Okay, fine. Let’s proceed I think to myself, let’s get back on track and go over my questions regarding the pros and cons of each treatment. I have a question about my blood work. My white cell count is really low, I mean really low. I ask if she could tell me what was causing that.
This is her response, “It’s from the chemo.”
Let me understand this, “My white cell count is low because of the chemo I received?” I say. Her answer is “Yes.” I have not had chemo. In fact it hasn’t even come up as a necessary part of my treatment plan. It is at this point that I am flooded with emotion and doubt and serious confusion.
I feel utterly defeated. I feel more confused than I have ever been.
Not only is my doctor not hearing me, not understanding me, not even reading my chart, she may actually be dangerous and at the very least crazy. There is only one thing I know for sure. I need to get out of this office. I need to never come back. I need another doctor. I need someone to hear me. I need answers. Now I’m mad and I want to scream and I really need a drink now.
To this day when I think of this moment, this appointment. I wish I had a witness to it. It sounds too crazy to believe and yet I lived it. I am sure it happens every day in one office or another. A woman that isn’t heard, a woman needing answers being told her questions are not relevant. Someone who is scared to trust their doctor and yet feels they have no other choice.
From this moment forward I learned to never go to an appointment alone.
There were many other times I thought I could and I was wrong each time. Because I am stubborn I relearned that lesson again and again.
I never went back to this doctor. I never called, I never followed up. I left that office and I never looked back. I started the process all over and rebuilt my entire team, and that was the best decision I made.