[Trigger warning: illness]
‘This is dope. I’m going to meet Jim Jackson next week’ I tweet and watch the replies: “pass on my hopes for his recovery.” “UR soooo lucky.” “jim is an inspiration.”
Jim hasn’t replied to me at all, despite me being his greatest fan. I’ve been with him since the beginning. I know, he’s grown his follower base, maybe sometimes he’s too sick to type replies, but he could at least have sent an emoji once in a while.
My Mom, on the other hand, is too much information. She worries the trip to New York might affect my emotional balance. But I also have followers, and doing this for them is more important than any issues I’m having.
The cancer charity says I’ll get at least 15 minutes, depending on his condition that day.
New York is different from Orlando. My hotel room on the 38th floor should have a great view, but the clouds and drizzle have turned things into a gray misty afternoon.
Once I’m connected to the WIFI I see Jim has posted a new video:
I’m feeling dizzy after starting the new treatment protocol, but I’m sending love to all my followers. Without you, I wouldn’t have made it this far. Hit up the comment section and let me know what you are struggling with today. Jim.
Breaking my usual habit, I skip leaving a comment despite being his biggest fan. What’s it like being a fan? It’s like having a friend. When everyone else in your life lets you down, you can always count on them and their fandom to be there for you.
I watch the comment section now streaming with replies. Disappointing that my visit tomorrow isn’t mentioned. I replay Jim’s video, and notice taped to his hospital wall is a portrait of decaying fruit. Google Lens shows it's a famous oil painting by Abraham Mignon. I get it. We are all decaying fruit. Clever. As the number one leukemia YouTuber, Jim must have people coming up with ideas for him.
The next morning, the noise of the hotel gets me out of bed early. Jim has already posted.
Hi Everyone. It’s 5am in the morning. They woke me to take my blood test. It's day 4 of my 5+2. The bag you see there drips Gilteritinib into me 24 hours a day. Targeted therapy they call it, but my hair is falling out just like it did on the first round of chemo. Jim
Cancer sucks. After having a bite to eat, I walk the five blocks to Sloan-Kettering to get the lay of the land before my 10am visit. I sign in on the 8th floor and the nurse at reception enters my name into a visitor log. Sitting in the waiting room, I recognize Jim’s parents from the videos. I scroll my mobile while keeping an eye on the activities of the nurses and doctors.
“Dan?” A nurse is standing in front of me. “Jim has time for you now.”
“Thank you,” I say, studying her name tag. “Shannon.”
We walk to Jim’s room, she opens the door. “Hope you two have a nice chat.”
Jim watches her close the door and winks at me. “She’s been all over me since I put her on my channel.”
I chuckle at his ironic humor. He hasn’t even introduced himself yet guess I’ll start.“As you know, I’m Dan. It’s great to finally meet you.”
“Same here.” He grins slyly. “You’re not going to pull any tubes out on me or anything, are you buddy?”
“No, of course not.”
“Because, I read some of your comments. Bro, I’m sorry I can’t respond to everyone.”
“No problem. It’s fine.” I imagine the dog in the house on fire gif.
“That’s good to hear. In life, we’re all on the same journey.”
“Yes, we are.” I study the picture of decaying fruit on the wall. “Need to make the best use of our time here on the planet.”
“It’s great to meet up with someone real my age. Who doesn’t say things like how courageous I am with tears in their eyes. Or fake laugh at my jokes. I’m just doing the same thing anyone else would in my condition.”
“I hear you. Fake laugh?” I am laughing. “No risk of that with me.” Even my parents have said I should try to lighten up sometimes.
We look both look around the room, not knowing where to take the conversation. I remember the gift. I take the package out of my backpack. “I brought you something. A piece of Florida sunshine”
He opens it. There’s a little ceramic sculpture of two dolphins jumping out of the water.
“Let’s get a selfie.” I move over next to Jim, hold the camera as far away as I can with one arm, and snap a few pics.
The ceramic dolphins join the other gifts on the window ledge. We talk through the usual “how’s the treatment going” medical info, and after ten minutes he's running out of energy, and I say my goodbyes.
Going back to the waiting room, I sit alone on the opposite side from his parents, and process everything.
As I’m waiting, I see Jim’s nurse Shannon click out and walk into the elevator. It's heading to a lower floor.
It’s time to get started with what I came here for.
I grab my things, and take the next elevator down. On the first floor, I walk to the cafeteria and sure enough, Shannon is already sitting down eating. Nurses don’t have time to waste.
From the refrigerated display case, I pick up a shrink-wrapped Turkey sandwich and pay for it at the register.
Two seats over from Shannon, I unwrap it.
“Hi, I recognize you from upstairs.”
“Hi?” she says, with a blank look of a customer service person who is frequently asked questions.
“The eighth floor. I was visiting Jim.”
“Oh, our famous patient.”
“The treatments for leukemia have been changing so quickly…” I say. “You must have to do a lot of hard work to keep up with everything.”
“Yes, they have. The new protocols for chemo, radiation, marrow transplants…”
“CAR T cell therapy?”
“For special cases.”
Shannon narrows her eyes. “How do you know so much about leukemia?”
“I’m studying pre-med at Ohio State.” I segue into my pitch. “I’m doing a research project on the history of AML treatments.”
The adrenalin rush of lying is exhilarating. My ex-girlfriend disagreed with my decision to drop out of medical school. But even though it’s been over a year, I still remember much of the medical jargon.
“Ah, so you’re a future medical professional. Jim tried CAR T at his previous hospital, but it wasn’t effective”
I ask general questions about the other treatments for Acute Myeloid Leukemia, but I’ve already received the information I was looking for. Shannon soon needs to rush off, and we say goodbye as if talking about leukemia treatments was a normal conversation, which in a hospital cafeteria, it very well could be.
The next day, I make up an excuse there’s something I forgot to give Jim, and go back up to oncology. Same as yesterday, Jim’s parents sit in the waiting room.
I settle into a chair two seats over. “Hi, I’m Dan.”
His parents smile politely. People seeking camaraderie often talk to strangers in waiting rooms like this.
“A friend of Jim’s,” I add, “Hey, can I buy you two a coffee?”
“No thanks,” his dad says, not showing interest in talking. They’ve been through a lot.
I nod and sit in silence for a while, “It’s a shame to see Jim suffering like this, when he hasn’t tried CAR T.”
The dad turns toward me, now focused on what I’m saying.
“I didn’t want to get involved, but it’s hard to watch a man drowning and do nothing about it,” I mumble apologetically.
Over the last two months, I’ve been digging into Jim’s medical history, searching for anything to help him. His previous hospital sent his medical records to a prestigious sounding fake email address of mine. The records show he never tried CAR T cell therapy. The reason why, however, is not shown.
“What’s that thing you mentioned?” the dad asks.
I tell him again. He pulls out a notebook and writes it down and starts discussing it with his wife, whether she knows anything about it.
“I brought these for Jim.” I place the gift wrapped box of cookies on the chair next to Jim’s dad. He gives a tiny shrug as I stand up. Mission accomplished. I leave the hospital and go back to the hotel to catch up on sleep.
A week later, I’m back in Orlando.
14 March 2023
Hi Everyone. I want to ask all of my followers to block long time group member Dan. I graciously accepted the make-a-wish meeting in New York, but Dan talked to my family without my consent and interfered with my treatment.
We don’t get to decide our cancer. But we do get to decide our own treatment.
16 March 2023
Hi everyone, the online community has been questioning how I have been in treatment this long without being given one of the main new therapies. I’d like to remind everyone patient privacy laws exist for a reason.
7 April 2023
Today I’m receiving CAR T cell therapy. Even though I’ve researched this and know it won’t work in cases like mine, I have agreed with my doctors that this is the best course of action.
21 April 2003
After weeks of treatment, this is the first day in months I’ve been able to walk the hospital garden.
10 May 2023
Good news everyone, attached is a video update from girlfriend Kate, who I love dearly.
His girlfriend appears on the screen with tears in her eyes. “Hello to all of Jim’s followers. The doctors say with today’s lab results, Jim is officially out of the woods and on the road to recovery!”
Great news. I haven’t heard a word of gratitude from Jim, but I should thank him, following him has made my own journey easier.
My energy is running low. I close the laptop, having finished my last post of the day. I’m about to doze off, when the nurse enters my room and says it’s time to take the next blood sample.