A Hot Soup Sandwich

May 24, 2025 · Hospital Room Edition

This was a busy week, and I’m not going to try to write a novel, but let’s be real, it’s still a mini-chapter. There’s a lot packed into this one. I’ll try to keep it entertaining, if not enlightening.

Tuesday: White Coats, Game Plans, and an Assembly Line

We kicked things off with a visit to the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Medicine. The goal? A consult and deep dive into the stem cell transplant road-map. My oncology dream team (now with two new rock stars from JHM) is all in agreement: we're shifting to a new chemo regimen, Brentuximab Vedotin (BV) + Ifosfamide, Carboplatin, and Etoposide. The last three known in the oncology world as ICE.

Once we hit specific milestones with the treatment, we’ll move into transplant territory.

Let me just say, Hopkins runs like a machine. Within two hours, I had intake, consult, typing labs, and transplant planning all knocked out. It was impressive, efficient, and mildly overwhelming. Thank God Maria was there. She tracked every detail, asked smart questions, and helped make sense of the whirlwind.

Wednesday: Green Light, Red Tape

Wednesday was more logistics. I met with the Nurse Practitioner, confirmed we’re still go for launch, and reviewed labs, blood counts are finally up (insert minor celebratory fist bump here).

Just as we were gearing up to start the new chemo regimen, we hit a snag: insurance still hasn’t approved BV. So for now, we’re moving forward with the other three medications (ICE) and will circle back to BV once the paper-pushers catch up with science. It feels a bit like starting a race with one shoe and hoping nobody notices you limping.

BV is a relatively new addition to the chemo world, a targeted therapy that’s been changing the game in treating certain types of lymphoma. Unlike traditional chemo that hits everything in its path, BV is more precise. It’s a type of treatment called an antibody-drug conjugate, which means it uses an antibody to find and attach to cancer cells, then delivers a cancer-killing drug directly into them like a guided package. When combined with the ICE regimen, it has shown strong results in patients who have relapsed or are preparing for stem cell transplants. It’s kind of like adding a sniper to an already powerful strike team. Not having it in the mix right now is frustrating, because the science is clear, this drug helps. Thank goodness for BV being explained on Google, because without a few searches, there was no way I could write this paragraph.

That said, my main oncologist, who is currently on vacation in the lush green of Ireland with her family, hasn’t missed a beat. From across the Atlantic, she drafted a detailed letter of medical necessity, backed by research and clinical justification, explaining exactly why I need BV+ICE to the insurance company. She has a letter of support from the team at JHM. She may be sipping tea in a stone cottage somewhere, she’s still in the fight with me. That kind of commitment is rare, and deeply appreciated.

Donor Calls: Conversations That Matter

Between Wednesday and Thursday, I began reaching out to potential stem cell donors: my siblings and my kids. A transplant nurse will eventually contact them to begin the matching process and submit results to a medical board. My only role was to open the door.

Each conversation was different. Some were simple, others needed more context. One is still pending, one of my sons is currently floating in the Pacific Ocean, so that talk will happen when he hits his next port. I didn’t apply pressure. This is a personal decision, not a guilt trip. I just wanted them to hear the why and the how from me, not from a stranger with a clipboard.

Looking Ahead: Housing, Caregivers & Ballpark Views

The transplant will require daily check-ins at JHM. That means I’ll need to temporarily relocate. We’re looking into a corporate lease or short-term housing in Baltimore. I asked Maria to find me a place that overlooks Camden Yards. She suggested something quieter and closer to the hospital. I continued to suggest a 7th-inning stretch from the balcony would help me heal faster. The jury’s still out.

Also, I’ll need a 24/7 caregiver during that phase. I can’t drive myself, and I’ll need support during recovery. We haven’t figured out that piece yet, but we will. Like everything else, we’re taking it one step at a time.

Public Service Announcement: If you’re a federal employee and they offer you long-term disability insurance, take it. Seriously. I wish I had grandfathered in when I had the chance. It would have made this entire process a bit less financially stressful.

Friday: Welcome to the Circus

Hospital check-in: 8:00 a.m.
In the room: 8:30 a.m.
System confusion: Immediate.

This wasn’t Maria’s hospital, and the difference showed. The staff couldn’t locate me in the system, so we started the day with delays and confusion. Once we got into the room, things escalated fast. The attending doctor showed up the moment I stepped into the room. No exaggeration, I hadn’t even set down my bag. I was literally one shoe off, and he was already asking about my medical history. I know reading a room isn’t everyone’s strong suit, but shit my man, give a brother sixty seconds to breathe.

Within thirty minutes, it felt like the entire staff had converged at once: a nurse setting up the heart monitor, a chemo nurse walking through the infusion process, a nurse practitioner checking in, and a phlebotomist coming for blood work, all at the same time. It was a full-on sensory assault.

For an introvert, this was the social equivalent of being hit by a marching band, not just passing by, but turning and performing a halftime show right on top of me. There was no space to breathe, no pause between interactions, just overlapping layers of noise, questions, beeping machines, clipboards, wires, and people trying to be helpful all at once. I was nodding along, answering questions, but internally I was scrambling for a mental hidey-hole, somewhere quiet and dimly lit with no small talk and no vital signs to monitor. If I could’ve unplugged myself and rolled under the bed for five minutes of silence, I would’ve. Instead, I just smiled, blinked slowly, and tried to look less like I was short-circuiting.

Chemo: Powered by Duct Tape and Determination

My pre-meds for chemo started off rocky. The nurse was scanning the wrong med codes. Maria caught it and calmly navigated us through the mess. The whole thing was a hot soup sandwich, disorganized, a little sloppy, and somehow still held together with good intentions and duct-tape-level problem-solving.

By 3:30 p.m., after two pharmacists, a chemo nurse, and one floor nurse (who came back early from lunch), we got the infusion started. That floor nurse was clearly the only one who knew what she was doing, but you could tell she was hesitant to step in and “show up” the senior staff. Once they directly asked for her input, she calmly took the reins and walked everyone through the process.

Even then, the team struggled. Scanning bags and inputting data into the system felt like trying to crack a safe. I sat there mentally drafting a standard operating procedure they could actually follow. Honestly, I still might write it.

Maria finally left at 7:35 p.m. after a full shift of troubleshooting and patient advocacy. I don’t say this lightly: I couldn’t do this without her.

Friday Night: Mephistopheles and Midnight Walks

The chemo infusion ended around 10:30 p.m., but IV fluids kept running all night. That meant I was up every hour for bathroom trips. All told, I got maybe two to three hours of fractured sleep. On top of that, the room turned into a sauna. Even with the thermostat down, I was roasting. Turns out, the only way to cool the room is to leave the door open, which no one told us. So I spent the night trying to sleep in what felt like the armpit of Mephistopheles.

Saturday: Beeps, Bags, Bald Spots & Tomato Basil Mercy

Saturday started before sunrise. By 5:00 a.m., I was already up for labs, urine samples, and a round of early doctor visits. The chemo kicked off soon after, and the day was officially rolling.

I told the chemo nurse I’d be working on a few things on the computer and planned to nap later. She nodded. She’s been quietly stationed at the computer ever since, not sure what she’s doing in the charting software, but it looks like the software might be winning. Watching her navigate it has been... fascinating. The perfect blend of bureaucratic data overload and user-interface chaos.

The good news: no major side effects from the ICE itself, at least not yet. My biggest issue is the constant fluid intake. I know it’s important, but getting up every hour to pee is becoming a running gag with myself. I'm getting a preview of future-me as a grumpy old man, mumbling about how "I just went ten minutes ago."

Oh, and my hair? Yeah, it’s starting to go. This week, I noticed bald spots forming, and they’re growing bolder by the day. Thankfully, I’ve still got just enough coverage to pull off a respectable “Presidential” combover. You know, one of those as long as there’s no breeze and you don’t move your head styles.

Maria came in later in the morning and stepped out briefly to run errands. When she came back, she surprised me with a bowl of tomato basil soup from la Madeleine. That warm little cup of comfort absolutely made my lunch hour. Not as much as seeing her walk in, though. Her presence has a way of resetting the whole day.

Looking ahead: Sunday includes a bit more chemo, and there's a chance I get discharged in the afternoon. If not, then Monday. I’ve got a growth factor shot scheduled Tuesday to boost my immune system, and Wednesday is stacked, an appointment with the Nurse Practitioner at Virginia Cancer Center, and I also need to get cleared by my dentist as part of the transplant prep.

So yes, a lot of medical appointments, sprinkled between attempts at normal life and professional careers. It’s a balancing act, and it's keeping both Maria and me on the tired side. But we know this season will pass.

Andor, Truth, and That Quote That Stuck With Me

On a completely different note, I finished watching Andor this week. Absolutely amazing. I was hooked from start to finish. My favorite quote came from Mon Mothma, and it hit me hard in all the best ways:

“The distance between what is said and what is known to be true has become an abyss. Of all the things at risk, the loss of an objective reality is perhaps the most dangerous. The death of truth is the ultimate victory of evil. When truth leaves us, when we let it slip away, when it is ripped from our hands, we become vulnerable to the appetite of whatever monster screams the loudest.”

That quote’s going to live rent-free in my head for a while. The show was brilliant, telling a well-known story in the Star Wars universe without leaning on the Force as a crutch. I loved the politics, the espionage, the quiet bravery. If you’re into Star Wars, here’s my unsolicited recommendation: Watch Andor. Then Rogue One. Then A New Hope. It hits differently. In the best way.