Patient POV

Cancer is the story of hope. How could it not be? When you get it, you hope it goes away. That's why you show up for the infusions, trials, and tests.—blogger David Lee Nelson

4/19

David Lee Nelson, Blogger

I've decided I'm not going to say "chemo" anymore, but instead use the full word. Chemotherapy.

The therapy part has a nice ring to it, like there are going to be scented candles and carafes of water with cucumbers. "I'm here for my chemotherapy. Where's my robe?"

Two days ago, they found more cancer in my lymph nodes. So candles or no candles, chemotherapy was something I needed. And today is the first day. It felt like the first day of school. I laid out my outfit the night before. I bought snacks. I was nervous.

But I also was excited to get the whole thing started because I was tired of building it up in my head. Our brains can take the thinnest reed and twist it and turn it and spin it out of control.

Besides, it's never the things you worry about that become problems. I was worried about booking an audition, or if my car would make it to 200,000 miles. I was certainly never worried about Stage 4 colon cancer. But here we are.

6/24

I love summer—hot weather, lots of daylight, fireflies, the smell of suntan lotion in the morning. I'm a Leo, I like being tan, summer is my time. So why do I go all emo on the solstice?

Because it's the peak. The first day of summer is also the beginning of the long, slow descent into winter. (In case you are reading this blog 100 years from now, winter was the time it used to be cold.) No matter that I have months and months of sunshine ahead of me, the fact that the days are slowly getting shorter is enough to make me spend the solstice moping, sad about what is to come.

This year, however, I didn't feel that way. I think I have cancer to thank for that.

One of the side effects of chemo is that it has radically altered my perspective. For example: today I feel amazing. Today my brain is sharp and my fingers are typing well. I don't feel nauseous or nervous.

I feel normal.

Next week, however, I won't. From the first flush of saline on Wednesday to the last of the chemo brain on Monday, it's an unpleasant six days. But I can't spend the days I feel good worrying about the days I'll feel bad. So I don't.

This attitude has, thankfully, spread to other areas of my life. This year, on the first day of summer, I didn't worry about the cold and darkness to come. I just sat on my grandmother's front porch with my mom and enjoyed the day. I listened to the Cubs game and watched the fire ants scurry around. I breathed in the fresh-cut grass. And I waited for the two egrets that nest at the farm to fly smooth and low across the pond.

6/29

Chemo is boring. It's like having to watch three French movies in a row. "I've sat here all day, nothing happened, and now I feel sick."

They don't tell you that when you first start. They tell you about the nausea and the hair loss but they don't tell you that you'll get so bored you'll want to stab yourself in the eye with a pencil. That you'll get way too excited when the snack cart comes around and you get some SunChips and a Kind bar, which breaks up the monotony of sitting under fluorescent lights staring at the wall.   

It's not like that at first. There's something exciting about those initial visits. Chatting with my lab techs. Getting to know my nurses. There are questions to be asked and crossword puzzles to do. But now that I'm on treatment 6, small talk is harder. Even though I know what these bags are and what they are going to do, I ask the questions anyway just to have something to talk about.

The crossword puzzles have lost their excitement, I've finished listening to "S Town" and "Serial," and I don't feel like reading. I'd rather be at the beach or the pool or at work. Anywhere but hooked up to this IV. Not that I'm not thankful. I know it's good. I'd rather have boring chemo than exciting cancer.

We smile through the pain, through the boredom, because we know that what's on the other side—hopefully—is life.

6/30

It's amazing the things cancer has made me less afraid of: Bugs. Needles. Turning 40.

I have a vivid memory of my Uncle Lenn turning 40. I remember the pictures of the black balloons and the coffin-shaped birthday cake. It was a weird thing for an 11-year-old to see. Like, okay, turning 40 means you're almost dead, got it. Let's file that away for a therapist to deal with down the road.  

So now, I'm less than a month away from my 39th birthday. I've never really liked birthdays, and you could make the case that 39 is the worst birthday of all. It's kind of the last call for your youth—like the bartender should be shouting over the music, "Any last minute, stupid things you want to do, do them now. At 40, all excuses stop!"

Birthdays also made me feel the weight of getting older. I'd look at my life/career checklist to see if I was far enough along to justify another year being tacked on to my life. I did a lot of things in my 30s: Quit drinking. Got divorced. Left New York. Fell in love a few times. Moved to Atlanta. Became a playwright. Became a professor. Quit smoking. Got cancer. Went to Europe twice.

I'm not rich, yet. I'm not famous, yet. But I am happy. Thanks to cancer, that seems more important than ever.

So bring on 39. And 40. And any more you might have. I'll gladly take all of them.

7/5

When I was a kid, I hated to spend the night away from home. I used to wake up in the middle of the night, in the dark, in a strange bed, so far from morning. I wanted the light to come in so I could wake up and go be in my own space.

I thought about that feeling today, because it is officially the halfway point of my treatment. I'm in between treatments 6 and 7. Yesterday I was closer to the beginning than the end, tomorrow I'll be closer to the end than the beginning.

Back at the start of the year, when I was not feeling well and had no idea what was wrong, it was the not knowing that drove me crazy.

Now it's the knowing that's hard: Knowing how the chemo will feel, knowing that my mouth will taste like metal, knowing that the chemo brain will last until Monday, and knowing that—today—I'm right in the middle of it all.

7/21

One of the things that is helping me through this process is to view having cancer as an artistic endeavor. It helps give the whole experience meaning and purpose. A context. But it drives me a little crazy having no idea how this is going to end.

I'm in the middle of a story with a huge conflict (life or death), a brilliant antagonist (cancer), and no idea what the ending is. What I'm left with is hope.

Read more of actor, playwright, and comedian David Lee Nelson's blog about being a patient at Emory's Winship Cancer Institute