by Donna Poole
I’ve always loved mornings with their unknown possibilities, but I hope you won’t think less of me if I confess that during these last five and a half years bedtime has become delightful. Epcoritamab, the cancer drug I take in the clinical trial I’m part of, has several side effects, and exhaustion is one. It’s rare if I don’t have to nap after a shower. I cook a little, nap a little, clean a little, nap a little, write a little, nap a little. Bedtime is my favorite.
We have a nighttime ritual. John comes to my side of the bed, tells me I don’t know how to fix my own covers, and snugly tucks me in. He kisses me, smiles, and goes to his own side of the bed. Then he turns on his phone, and we listen to Max McLean read the Proverb of the day.
Did you know the book of Proverbs in the Bible has thirty-one chapters, one for each day of the month? We’ve listened to or read those chapters for so many years we know many of the verses by heart. Like, “How long wilt thou sleep, O sluggard? When wilt thou arise out of thy sleep?” That’s not one of my favorites, especially when I sometimes drift off before the reading finishes!
Our bed is cozy, and our bedroom has become my sanctuary. I love church; I adore family times and outings, but I sometimes stumble home with hazy vision and collapse into bed needing sleep like a man lost in a desert needs water.
Sleep is my friend. But when my treatments involve steroids, sleep acts like it’s never seen me before and doesn’t care to make my acquaintance. Last night was one of those nights. Yesterday I had an IVIG infusion for myasthenia gravis, and that involves Tylenol, Benadryl, and IV steroids. The Benadryl and the steroids duke it out; I either can’t stay awake or I can’t sleep. Last night the steroids won. I slept only forty-five minutes, and I’m not complaining.
Staying awake was rather delightful. From 11:18 to 2:34 a.m. I texted my night owl daughter on and off. Both my daughters are night owls, but I texted Kimmee, the one who lives with me. Via text, she helped me pick out a Christmas gift for her brother and do some other online shopping. I jokingly asked her to put earplugs in my stocking to block out her dad’s snoring and then recanted. His snoring doesn’t keep me awake. It’s my white noise. When he quits, I panic and think he’s dead!
Kimmee felt bad for me because I couldn’t sleep, but I texted, “I usually sleep my life away! All night and two or three naps, so it’s kind of fun to be awake!”
It really was fun to be awake in the quiet of the night. When I stopped texting, I thought of an amazing idea for a blog; it was so good it probably would have gone viral. It was epic, so I didn’t bother to write it down. Who could forget such a genius thought? I could; that’s who.
I thanked God for my many, many blessings. My scans last week showed only one spot to watch; there’s always something to watch. Morticia still slumbers peacefully, though since last January we’ve had several times we thought she was trying to wake up.
My right upper lung is heavily damaged from radiation, and the scans show the left lung is now showing signs of damage too. Perhaps in a few years I’ll sound like Darth Vader when I’m awake, not just when I’m sleeping and out-snoring John, and oh yes, I can do that!
I lay in my cozy bed and thanked God for the comfort of my pillow and my blankets tucked in just right, and for the blessing of still having a husband at my side. This will be our fifty-seventh married Christmas. I thanked God that the steroids were calming some of the pain from the cancer treatment, and I prayed for many of you.
Then I decided to check out the newest research findings on Epcoritamab. I was surprised to discover that of the 157 who started in the trial only 19 still remained in treatment by May 2024. My first oncologist I had during the trial, Dr. Tycel Phillips, contributed to the most recent article summarizing the study results compiled in May 2025. What I read in that article reminded me God really has given me a miracle. The trial began in 2021 with 157 of us world-wide who had relapsed or refractory large b cell lymphoma. We were all heavily pretreated and not responsive to the lines of therapy we’d had. Of the 157 people, 59 % of us had some kind of response to Epcoritamab, and 41% of us had a complete response. By May of 2025 only 27 people of the original 157 still had a complete response. Those numbers may sound dismal to you, but to oncologists they are a miracle. I’m not exaggerating when I say just a few years ago, before the arrival of Epcoritamab and other new drugs, most if not all157 of us would be dead. Even with these new drugs, many still are. Relapsed, refractory diffuse large b cell lymphoma is a monster, especially when it travels to your lungs like mine has.
The newest report shows the 157 of us had a median overall survival of 18.5 months. But many of us are still alive, and I’m blessed to be one of them. Even with all our treatment it’s very possible to have minimal residual disease, MRD, a tiny number of malignant cells that remain, too small to show up yet on bloodwork or scans, but still lurking, waiting for a chance to pounce.
Years ago, when my cancer was in several places, I named the largest tumor, the one in my lungs, Morticia, and told her she was going to die. She put up some kind of fight, and I still don’t trust her. My team still doesn’t use the word remission. Some of my scans say, “Due to the patient’s underlying malignancy repeat follow up recommended.” Then I get a scan in three months, not the normal six months. Other scans just say “Attention on repeat imaging,” and then I get to wait six months. I don’t know if I have any microscopic malignant cells, but I know God is in control.
In May 2024, nineteen of the original 157 were still getting Epcoritamab. The article that summarized results in May of 2025 didn’t say how many were still getting treatment. It did say the longest person to be in therapy was 54.8 months. That’s my time frame. So, I’m one of a few still getting cancer treatments every month. The side effects of the treatment aren’t fun, but they’re nothing like chemotherapy was, and I’m grateful for it.
When it comes time to die, I know where I’m going. I’m headed straight to heaven and into the arms of God who has carried me all through my life. Thankfully, my destination doesn’t depend on my goodness, and yours doesn’t depend on yours. I mean, think about it. How good would we have to be? We’d have to be as good as God. That’s why Jesus, God the Son, came to earth as the baby we celebrate at Christmas. He came to live the perfect life we can’t live and to die on the cross for the sins we know about and the ones we’re too self satisfied to even recognize.
So, I smiled in my cozy bed, and listened to John snore, my beautiful white noise, and I thought about the amazing love that brought Jesus to earth. I thought about how beautiful our tree is this year. I knew the lights on the Christmas tree in the living room were off; John’s not one for leaving them on all night. The electric bill doesn’t need any help to grow. But this evening those lights will glow.
The star on the top will slowly rotate, spreading its colors around the room as it has done since our first Christmas. It’s been broken and glued, but it still shines. Until Jesus whispers, “Come on Home,” I want to be like that broken star. I want him to shine through my broken pieces and light the way Home for others stumbling alone in the dark.
Scripture says it best; Jesus is the light of the world, and the path of the just is a shining light that grows more and more unto that perfect day. My perfect day is yet to come, but God’s light warms my heart even during sleepless nights in Michigan. Next time, I’ll write down the idea for that epic blog. And it probably will go viral.
The end
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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
Photo Credit: Kimmee Kiefer
Donna, thank you for sharing this writing… thank you for your honesty. None of us know how our days are numbered, but when we get up in years, many years, we can appreciate the efforts of writing, no matter what the challenge may be. I hope to focus on every touching moment that Jesus has to offer. Moment to moment, I want to rejoice knowing He loves and comforts us in our challenges… and is making us stronger in our faith. God bless you and John and your family with the loveliest Christmas celebration yet!
Thanks Donna! I hear you about the sleepless nights., Since my hip replacement on Nov. 25 I have had many.of them. That is something new for me! Usually, My head hits the pillow, I start praying for my family and I am out! Speaking of praying, we pray for God’s richest blessings on you and John in this painful part of your ministry, for His glory., We love you guys! We are all ready to hear His call home! We’ll see each other here, there or in the air! I send you a real Italian hug!