Saturday, March 11, 2017

Memories (Not the Good Kind)

I had an interesting experience yesterday.

My wife had an appointment for some testing at the hospital near us. (She's fine, in case you were worried.) We went up to the second floor of one of the buildings, and as she was checking in, I got a very strange sense that I'd been there before. The building is kind of pyramid-shaped, with one wall completely made of glass windows. In the middle if the waiting area, there was a large planter in the middle.

I knew those windows. I knew that planter.

This room was the same room I was in when I had probably the worst day of my life.


In the 9 years since I was diagnosed, the hospital has built a new oncology wing. Oncology departments used to spread all over the hospital, and 9 years ago, this was where Hematology was located.

After I was diagnosed, and after the initial testing with Dr. R, he recommended I see a specialist, so I could establish a relationship with one just in case I needed it. Dr. R was in a private practice, and Dr. C, the specialist, was at the research hospital. I made an appointment to see Dr. C at the hospital.

Dr. R had warned me that Dr. C was very good, but also very honest. He wasn't going to sugarcoat anything. I wasn't worried. I didn't think I had much to worry about. By the time I saw Dr. C, I was beginning to understand more about Follicular Lymphoma. I was looking at best-case scenarios. Dr. R had told  me that most people won't die from Follicular Lymphoma. It was a slow-growing, indolent cancer that I could have for many years.

Dr. C was indeed more straightforward with me. It was a good visit, and he told me some things that made me happy -- he talked about new treatments that were coming up that he was very excited about, like a vaccine (which ended up not working out in trails). He told me that anything I read online was already out of date -- things were happening that quickly in Follicular Lymphoma research.

And then I made some comment that was in line with what I had heard from Dr. R. Something like, "But people don't die from Follicular Lymphoma."

And that's when Dr. C scraped off the sugar from that bitter pill. "Oh," he said, "this will reduce your life span."


I'm always amazed at the stories we tell ourselves. Like any good story teller, we choose details to create the narrative that we want, and ignore others if they don't help us make our point. We lie to ourselves, in a way. From the day I was diagnosed, I picked the details that made my story happy. People don't die from Follicular Lymphoma. I'm going to be OK.

And then, within just a few seconds, my story turned completely around.

After I met with Dr. C, he asked me to stick around. It was January, and I hadn't gotten a flu shot, and he thought I should have one. We went back into the waiting room.

I remember those windows. I remember those plants.

Yesterday was a cold snowy day. That day nine years ago was cold but sunny. I remember the waiting room being very crowded, and I took a seat near the window, with the sun hitting me in the face. I remember being hot and cold at the same time.

And I remember looking around and seeing sick people. I'd been to Dr. R's office three times already at that point, but I never really saw anyone who looked sick. Now, in Dr. C's waiting room, all I could see were sick people. The Stem Cell Transplant Center was around the corner, and I was in a room with people with heads bald from chemo, pale and skinny. It was finally hitting me -- I had cancer.

I was taken down the hall and given my flu shot, and as I walked back to waiting room, I went past a wall rack full of pamphlets about different types of lymphoma. I'd been reading about FL for a solid week, but I grabbed the Follicular Lymphoma pamphlet anyway.

That was a mistake. I don't remember the exact numbers that I read, but I looked at survival rates, and it said something that struck me as bad. Maybe an 80% OS rate for 5 years, and a 65% OS for 10 years? I'm sure those numbers are wrong, but whatever they were, the one thing that drilled into my brain was What if I'm one of the 20% that dies in 5 years?

Dr. C's statement about life span. The numbers on the pamphlet. The bald heads of the patients around me.

It's amazing how quickly we change our stories. We choose the details to tell ourselves, and we ignore others.

I went into a deep depression for about two weeks. I worried about my wife and my three young kids. I broke into tears every half hour or so and his them from my family.

(It was after two weeks that I finally told my wife how I was feeling, and she told me that we'd get through it together. New details for a new story.)


So yesterday, I recognized those windows, and I recognized those plants. As my wife sat in the nearly empty waiting room to be called in, I looked around for a directory, to see if this really was Hematology. Before she got called in, I told her that I thought this was the same room.

She went in for the tests by herself. (Even after 24 years of marriage, her heart still flutters when I walk in the room, and I was afraid my being there with her would mess up whatever tests they were doing.)

So I sat by myself in that waiting room, for the 3 hours or so that the tests took. I read a book that I'd brought with me. I got up and walked around. Sure enough, I saw a bronze plaque that had something to do with an important donor and Hematology. This was the place. I also found a big Andy Warhol-type print of a local personality, his face repeated like Marilyn Monroe's, hanging on the wall. This personality had blood cancer, too. It's funny -- one memory of that bad day was seeing him in the hallway. This was most definitely the old Hematology department.

So I read my book, and wandered around, and even took a nap for a half hour in the stiff waiting room chair.
Were you expecting that, during my nap, I had a horrible dream about thqat bhorrible day 9 years ago?

No. I didn't really dream at all. I sat in that same waiting room, my back against the big planter, looking at the snow falling out the window.  It's a new department now. New details. New story.


This morning, my wife apologized for not remembering how bad a day that was. She remembered being hit by the site of the chemo patients. But she didn't remember Dr. C saying anything that upsetting to me.

I said to her, "That's because I never told you how upsetting it was."

We choose the details to shape the stories that we want to tell, to ourselves and to others.

It's been 9 years since that bad day. There's no way I could slip back into the way I felt all those years ago. My story is so much different now than it was then -- the story I tell myself, the story I tell my wife, the story I tell all of you.

We are the writers of our own stories. Just because we ignore some details, it doesn't mean that they aren't there. I can tell all the stories I want about not having cancer. That won't change the fact that I have it.

But the stories we tell can shape the way we look at the world, and the way we walk through it every day.

We all tell our own stories. You all know the story I tell.

Decide which story you'll tell yourself.


Anonymous said...

Excellent blog this morning.
I so remember 2 1/2 years ago, every time I went to my oncology appt, I'd look around at all the chemo and cancer patients, and think to myself: what am I doing in this place with all these sick people?
So upsetting to me! How can I be here? I don't look like them? I DONT WANT to look like them. But I am one of them, I DO HAVE CANCER.
It took me a couple months to get to the point where I wasn't sobbing every time I walked in those doors.
Fast forward, my last appointment I was giddy with the news that my blood levels improved and I follow up in six months.
I am choosing my story: I'm focusing on the longer survival rates, I'm focusing on what I read, that I'm going to die with follicular lymphoma, not from it. Plus new treatments coming down the pike.
Amazing what two years will do to a person.
( all that said, I haven't had treatment yet, that may change my feelings).
Thank you, Bob.
I hope your finger is feeling better.

Julia Buck said...

Love you. The way we craft these stories is so powerful, and shapes how we think about our lives and decisions and identity. Since this is my world now, your post of course reminds me of a couple academic works. There is some comfort in thinking about our own roles in storytelling. The first selection comes from one of my committee members, Yael Zerubavel, on page 221 of her book Recovered Roots:

"In the process of transforming history into a story, the decision of where to begin and end the story defines what constitutes the relevant event and determines its meaning. Since the event is retrospectively identified, the act of imposing those points of beginning and ending upon an open-ended historical sequence is essentially interpretive."

The second is about the storming of the Bastille, and how we come to think about something as an "event." The article is by William Sewell, "Historical Events as Transformations of Structures: Inventing Revolution at the Bastille."

Thank you for sharing this story, and all of the others in your blog, with us. xo