Way back, oh, several years ago, I edited a book for Dr. Joseph Pinzone. The book’s title was Fireballs in my Eucharist: Fight Cancer Smarter, and it felt a bit personal. Most of the time working on somebody else’s book is delightful because I am exploring strange and virgin territory; in this case, though, Dr. Pinzone was providing a roadmap for a route I’d already traveled–the journey through a cancer diagnosis, written by a doctor who had known how to listen as well as talk to his patients. In my case, the diagnosis was my dad’s, and editing the book brought back a lot of memories. And then it went to press, and I forgot. Or almost.
When my doctor called with my initial diagnosis I remembered exactly one thing from Dr. P’s very excellent book: He advised designating someone to go with you to appointments, to take notes and serve as a second set of eyes and ears. My first decision was to ask my sister Sandy to help me with the medical stuff. This is because she’s worked in medical and research communications for years. She knows the lingo. She knows the systems. And she knows me well enough to know how those things apply to me, my diagnosis, and my life. I did a smart thing in asking her. Kudos to me.
What I hadn’t considered was that my surgeon and the head of my treatment team, Dr. Gray, would also find it helpful to bring others to our meetings. I hadn’t expected my treatment to be such a team effort. Before I arrived I had thought it would be Marilyn, Dr. Gray, Sandy, and me. And then I got there.
Here’s a little tidbit for those of you who are unfamiliar with gynecologic oncology: It’s a messy, messy discipline. In the years leading up to the last few months I had given up on the impossible goal of feeling clean, and settled for just not having blood visible on my clothing. I had grown used to slamming awake at night knowing that if I didn’t get out of bed and to the bathroom immediately I would be leaving a trail of blood in addition to having to change my sheets and pajamas. I had completely given up on scheduling pap smears because the bleeding never stopped, and the doctors I tentatively asked about it indicated that doing an accurate examination around heavy bleeding wasn’t the textbook way to do it. I packed my purse with pads and extra underwear, got used to wearing four pads at a time and never getting too far from a bathroom. I gave up ever wearing light colors. I chose patterns that included splotches of red. I learned to sit on hard plastic chairs in public–never, ever, anything upholstered. And because this all crept up on me, I didn’t think too much about it. It was just the way my life was.
So then I got to SCCA for my pre-surgery appointment. The office nurse who went over my preliminary history with me had clearly read my records, but then she did something a little bit different. Instead of just reciting the facts, she told me my story–I think she called it a “narrative,” but I write stories, so I knew it for what it was. This was the story of me, and my lady parts, and how we had gotten from what amounted to an armed truce to open warfare.
In order to tell that story, she had to not only have my records at her fingertips–she had to know them. She had to understand the cause and effect relationships. And when she finished, I knew that I was more than just a collection of medical data–all those details could be arranged and understood in terms of story. It was a little flattering. This bright, intelligent person had made a story about me!
And then the hammer dropped. “Dr. Gray will be in to do an examination,” the nurse said. “Please take off your clothes and put this robe on.”
And there it was–the old problem. Because of course I was bleeding again. A lot. My doctor at home had put in an IUD a month before to try to stem the tide, and in the beginning it sort of had. But the week before my trip to Seattle my body had managed to override the IUD and we were back to business as usual. And now I was supposed to take off my clothes and bleed all over this beautiful office in front of beautiful, poised, professional Dr. Gray. I felt like a slug.
“Can we put something on the bench?” I asked shyly. “I’m bleeding.”
“It’ll be okay,” said the nurse.
“But I’m bleeding,” I said again.
“Honey, welcome to the world of ob/gyn,” she said kindly. She wasn’t going to cut me any slack. Bleeding or not, I was going to get examined.
I took off everything except for my underwear. Dr. Gray and her nurse came in, and I carefully, reluctantly, peeled away my last defense, hoping against hope that I wouldn’t get blood on the floor, and if there was blood, at least no massive clots.
It was not to be. By the time I had assumed the position I could feel the hot blood and gelatinous clots slipping free. “I’m so sorry,” I said, mortified.
“I can’t find the IUD string,” said Dr. Gray. She tried again. The IUD was nowhere to be found. “Maybe your body expelled it,” she said at last. “That would explain the bleeding. If it’s in there, I can’t find it.”
“I’m sorry,” I said again.
“It’s okay,” Dr. Gray said. “This is what we do here.”
Exam over, she pulled off her gloves and left me to get dressed again. The base of the examination table was smeared with blood, and clots lay on the floor. But by then it was too late to feel humiliated–Dr. Gray and her nurse had been right there in the thick of things, and they had both said that this was their world. I took a little comfort in that as I did my best to wipe up the worst of the mess.
And then we met for the post-exam, pre-surgical consult. As I said, I had known that Sandy, Dr. Gray, and I would be there. What I hadn’t expected was two of Dr. Gray’s nurses to be there, too. We sat around a table in a quiet, cozy little room, and Dr. Gray told me what she had found.
She explained that my diagnosis wasn’t quite as clear-cut as it had seemed back home, that there seemed to be a mixture of cancer types, and that there was some indication that things weren’t as advanced as they had at first appeared. She drew a picture of my lady parts (for a mad moment I thought of offering to do the honors, since I’d been making uterus pictures for the last month, but I managed to bite back the impulse).
And then she stopped, and one of her nurses took over, asking questions filling out forms, discussing nursing-related things in soft, gentle tones. I felt myself ease a bit.
Dr. Gray took over again. She explained the surgical procedure. She laid out risks and rewards. Sandy took careful notes. I heard her pencil scratching across her pad behind me and felt comforted–I could just listen and try to understand. Sandy would remember for later.
And so it went, each of the professionals on the SCCA team taking it in turns, managing the flow of information so I could absorb it, stopping to answer my questions. At the end of the meeting Dr. Gray and her nurses gathered up all of the papers, put them into a large manila envelope, and gave them to me to pass on at my appointment with the anesthesiologist. Thanks to Marilyn, I knew where and when that would be. I was ready.
I don’t often think of meetings being “scripted,” and even seldomer do I consider that a good thing. I don’t know if Dr. Gray and her associates had actually sat down and planned that meeting out, but I can say that as Sandy and I walked through the lobby on our way to the elevator I said, “Damn, that was well-scripted.” And it was.