Extra! Extra! Read All About It!

by Donna Poole

Extra! Extra! Read All About It

by Donna Poole

I need, oh, I don’t know, maybe a hundred newsboys with caps carrying handprinted newspapers like the ones we made in fifth grade with Miss Jennings. They could run among all of you handing out the papers and yelling, “Extra, extra, read all about it!”

Or I could use an airplane flying a banner through the sky over every one of your homes with my news printed on it. I know my dad would have loved to do that for me with his 1948 red Stinson. He’d have probably hung out the window shouting the news himself. But Dad’s in heaven; please, God, tell him the news!

I wish I could call, or send a snail mail note, or even text each of you personally and tell you the news, but I can’t for two reasons. I’m too exhausted, and I’d be sure to forget someone important. And I don’t want to forget anyone, because news, good or bad, must be shared with one’s friends. Is it even real until it is?

I can hear you, you know. You really should think quieter. Get on with it, Donna. Tell us the news already.

Okay then, I will. The story started late May, early June 2020. There I was, minding my own business and a few other people’s business too, but in my defense, they deserved it. Anyway, there I was, living my life, when an unexpected resident moved into my lungs. After many tests the doctors identified her as a large b cell non-Hodgkin’s lymphoma and put other letters and qualifiers after her name, but I won’t bore you with those. She had smaller companions elsewhere in my body, but she was trouble with a bold T. I named her Morticia and told her she was going to die.

The fight was on. First came R-chop. It’s a combination of drugs and often the first line of defense against invaders like Morticia. One of the drugs in chop has the nickname of Red Devil, and for good reason. Red Devil and its companions twisted my intestines into pretzels and devoured my hair, but it didn’t touch the cancer. Morticia swallowed R-chop for lunch and grew.

I prayed. My family and church family prayed. Many of you prayed. I fought as hard as I could. I practiced Tarzan yells in the parking garage at the hospital and offered to do one in the quiet cancer center. The nurses politely declined.

Next came radiation. That burned my esophagus, but Morticia laughed and stayed the same size. I was beyond exhausted. By then they were calling my cancer “refractory”—resistant to treatment. I backed Dr. Lawrence, my radiation oncologist into a corner and wouldn’t let him out until he told me what he thought my chances of making it were. He didn’t want to say. I threatened his life. He gave me 15-20 %. Part of that paragraph isn’t true.  

He said, “Look at it this way though, Donna. If you fall into that 15-20%, you have a 100% chance of making it.”

I liked the way he thought.

Dr. Kaminski, my cancer oncologist, said, “We’ve run out of options with you, Donna. You’re chemo resistant. I’d like to see you try to get into a clinical trial. I can’t guarantee it will help, but it’s something that might work.”

Getting into a clinical trial isn’t just signing your name on a dotted line. I needed another biopsy of Morticia; she stuck out her tongue at them while they were in there. I also needed heart, CT, and PET scans, a brain MRI, tons of blood work, a bone marrow biopsy, and I had to say all the multiplication tables backward while standing on my hands. Part of that paragraph is a lie.

Finally, I got accepted into a clinical trial for Epcoritamab, henceforth called Epco, a drug not yet on the market. It’s for patients with my disease who’ve flunked at least two lines of treatment.

I became a guinea pig patient with a new oncologist, Dr. Phillips, and a wonderful nurse practitioner, Tera. I loved my whole team, the drug trial coordinators, the amazing nurses in the treatment centers, and especially the caring ones in Ravitz where the guinea pigs go.

Along with the Epco, I had to take another chemotherapy, Gem-Ox. R-Chop might have one ingredient nicknamed Red Devil, but before Gem-Ox was done with me, I was pretty sure the devil himself must have invented it. I don’t think it’s always that bad for everyone, but I went directly from the other treatments to it and my body didn’t have much fight left.

Sometimes, at night, when the pain was bad, I begged God to take me home to heaven. But when the sun came up and courage returned, I said, “Now, Lord, about that prayer in the middle of the night. I didn’t really mean it ….”

He just smiled. God doesn’t answer the prayer of our mouths; he listens to the cry of our hearts, and he knew mine was just temporarily down and out.

Many days I didn’t feel human. I slept more than I was awake. I still sleep a lot. My daughter took over cooking and cleaning. She still does most of it.

Finally, session eight of Gem-Ox arrived, last chemo. Each one had gotten worse. I dreaded going. When I got there on August 10, 2021, I posted on Facebook, “God is so good! This is my last chemo treatment at University of Michigan hospital. John has never been able to go back with me, but today they changed visitor policies and here he is! The seven hours will go faster together! Edit: left home at 5:15 a.m. to be here for 7:10 blood work and a doctor’s appointment followed by chemo. We’ll be done here around 6:00 p.m. and hopefully home at 8:00. We don’t always party, but when we do, we stay out for 15 hours!”

Chemo ended but Epco continued. By late June 2022 I’d been in the clinical trial for about 14 months. We’d lost track of scans. We thought I’d had about 12 PET scans and 26 CTs. But none of the scans had found a guy we were looking for, name of NED, acronym for no evidence of disease.

I wrote on June 29, “Morticia, my lung tumor, is no longer growing, but she isn’t dead either. She’s been a nasty tenant—about destroyed the apartment and never paid a cent of rent. My next scans are in September. Maybe she’ll be just a pile of rubbish by then.”

She wasn’t. But like Tera, my NP kept telling me, “Stable” is a good word.

Life continued. We went to U of M once a month for my cancer treatment and once every three weeks for IVIG for Myasthenia Gravis. For quite a while I was supposed to stay away from groups because my immune system was low, so I became a semi-hermit and wrote books. When they let me return from solitary confinement to the general population I had to relearn people manners; I’m still working on that.

PET scans and CTs continued every six months. By now I have so much radiation I light up a room when I walk into it. People hear a hum when they stand too close, and the hair on their arms tingles.

Little by little the scan numbers started looking better.

We knew the facts. We’d followed the clinical trial study. If people respond to Epco they usually do it right away. It helps 61% if people who take it. Only 38% of them get complete response, and 23% get partial response.

I never thought lymphoma would kill me. But I never thought Epco would cure me either. I’m older; my cancer was refractory; lymphoma in the organs is especially hard to treat. Epco was keeping Morticia quiet and sitting in a corner; I was stable, and we were happy with that. Despite all the prayers, we honestly didn’t expect any more. We just heaved a sigh of relief and celebrated after every scan because Morticia hadn’t grown.

Then came Thursday, August 8, 2024. Tera told me the last few PET CTs seem to indicate what is showing up is just radiation damage and inflammation, not active lymphoma. Hello, Ned, no evidence of disease; you look even better than we expected. How about if you stick around for a while?

I’ll continue with the same cancer treatment and struggle with the side effects. They aren’t easy. I’ll have scans every six months. My immune system will still be compromised so I’ll have to be careful.

But I can’t quit smiling. I’m thanking God. I’m thanking every one of you who ever prayed for me.

Natalie, one of the wonderful nurses at Ravitz, told me she thinks three things go a long way toward helping cancer patients: faith, attitude, and a strong support system. I don’t think anyone could have had a stronger support system than I’ve had. Thank you!

I know Morticia might grow once again, but for now, I’m thinking often about this verse: “I shall not die, but live, and declare the works of the LORD.”—Psalm 118:17

Not everyone is going to read this, so do me a favor. Put on your cap, girls and boys, and help me spread the news!

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These blogs are now available in book form on Amazon:

Backroad Ramblings Volume One: Stories of Faith, Love, and Laughter

Backroad Ramblings Volume Two: Stories of Faith, Love, and Laughter

Backroad Ramblings Volume Three: Stories of Faith, Love, and Laughter

Backroad Ramblings Volume Four: Stories of Faith, Love, and Laughter

I have six other books on Amazon as well, four fiction books in the “Life at the Corners” series, and two children’s Christmas picture books.