Normal Counts and Sonic in my Bloodstream

 It's a beautiful day in East Texas, and the good news keeps coming - save for one scheduling snafu. I got in Sunday night, took the bus(es) to my hotel, then woke early this morning to go get a blood test. The blood test results are excellent, as my white blood cell count and absolute lymphocyte count are both in the normal range for the first time since before I was diagnosed. From what I understand, this is excellent news and means I'm well on my way to a complete remission - though it would be premature to unfurl the "Mission Accomplished" banner and give a speech.

As I was discussing the results with Meghan, the well-informed PA who works with Dr. Chien, she informed me that there was a scheduling miscommunication, and that I'd need to fly out Wednesday instead of tomorrow. "You could use the extra day to go for a long run around Houston," she suggested.

I saw an opportunity.

"Call me crazy if you will," I began, "but I have this unproven theory that if I routinely go running after taking the venetoclax and pirtobrutinib, that I'll be increasing my heart rate, stimulating blood flow, and distributing the drugs in and out of the lymphatic system, the bone marrow, and other harder-to-reach areas that CLL cells are known to hid in. This would - according to my unproven theory - lead to a deeper remission and a higher likelihood of getting every last CLL cell. Can you speak to this idea?"

Meghan's eyes widened (we both had masks on as it's required) and she paused before responding. "That's a great question!" She replied. "We don't get many marathon-runners in here, but I can see where that might make sense biologically."

That's all I needed. I went out and ran 10 miles right after the appointment. While I was running, I kept imagining that the little pirtobrutinib and venetoclax molecules were little Sonic the Hedgehogs. It's probably been a while since you've played that game, but my kids have gotten into it recently (you can play for free online HERE) and I've played with them.

In the game, Sonic runs around with his buddies Tails and Knuckles, gathering rings. I imagine that's pirto, ven and obin, running through my bloodstream and picking off CLL cells. Sometimes, Sonic can get a hold of his magic red shoes, which speed the game and music up like 5x, and Sonic and co. gather rings at lightning speed. That's what's happening with PVO when I run - Sonic's magic shoes, baby.

Good to Great

After a two-week hiatus, I returned to Houston on Super Bowl Sunday, missed a lackluster game, and headed back into MD Anderson Monday morning. I no longer feel like an out of towner, not in the Rice Village/Texas Medical Center anyway. I've got a routine down, know how to get here and there without Google Maps, and Devin the Dude pops up routinely on my Apple Music "Sean's Station". The algorithms know that I know what's up in H-Town. I'm also strengthening my feeling toward the Rockets (positive - going to the game tonight) and the Astros (negative - glanced at their howe schedule in March/April and I just can't imagine wishing them well).

Go Rockets

Anyway, let's start with the cancer battle though as I have good news there. I had a blood test this morning, followed by a Dr. Chien appointment - I hadn't seen her since the day before treatment started, and when my cancer was at its peak. We chatted about running and marathons and whatnot, which is typical for us. She informed me she's running the NYC half marathon next month for Blood Cancer United, and that this move was inspired by me and the Marshall Michigan Ramblers. I informed her that I'll be joining her at the Houston Marathon in January 2027. At some point, I asked "should we chat about CLL?"

"Oh yeah!" She said, as if we almost forgot to visit this topic. "Your blood test results are excellent," she started. Dr. Chien proceeded to explain to me that, one month into a 13 month trial, I'm sitting on a best-case scenario. The cancer burden has been dramatically reduced, my body is clearly tolerating the drugs well (pirtobrutinib and obinutuzumab, that is), and my outlook is very optimistic. She told me that, while she can't predict the future with certainty, she believes that I'll be at uMRD6 by the end of this trial. "uMRD" meaning "under minimal residual disease", and the 6 meaning no CLL cells detected out of a test of one million blood cells - the most sensitive test available nowadays. 

I start a new drug today - venetoclax - which I'll take as soon as I'm done typing this blog post. In keeping with my 2004 Detroit Pistons analogy, if pirto and obin represent the Pistons team at the start of the season (winners), then venetoclax is Rasheed Wallace - a midseason acquisition that turns a good team into champions. Where pirtobrutinib blocks survival/reproduction signaling and flushes CLL out of its hiding niches, and obinutuzumab recruits the immune system to destroy CLL in the bloodstream, venetoclax gets into the bone marrow and other hard-to-reach areas, pushing CLL cells into apoptosis (programmed cell death).

While each of the three drugs (P, V and O) have been studied individually, the clinical trial I'm a part of here at MD Anderson is determining how well they work together. CLL has gone from "incurable" to "manageable" over the course of the past 10-15 years, now the question is "if we combine therapies and drive the disease to uMRD levels, how long can remissions last? 5 years? 10 years? Indefinite?" We shall see if this PVO combo is a championship team, and the early results indicate that it is.

Ok, I'm gonna take this venetoclax, then head to MD Anderson for an obin infusion. From there, I have another blood test, then grab something to eat before I head downtown to the Rockets game. 80 degrees and sunny down here!

Life, Plato, and a Four Hour Drip

Tuesday morning and I’m writing this at Houston’s Hobby Airport. Switched it up from the typical HW Bush Airport and things are…the same. It’s all airports, man.

Yesterday proceeded flawlessly. Got that workout in, setting a treadmill distance PR in the process (3.1 miles, normally I struggle to get to 2), then a brisk two mile walk to MD Anderson where I had a blood test (WBC down to 19…closing in on the normal range!) and an uneventful obinutuzumab infusion. Uneventful meaning no side effects, no surprises, just 4 hours of slow drip into my vein, followed by an hour of monitoring me. 

My New Years resolution was/is to read the original Athenian philosophers - Socrates, Plato, and Aristotle. Socrates never wrote anything down, so that one’s done, and I’m into Plato now. Great stuff, but I only recommend it if you’re stuck somewhere for 5 hours with nothing else to do. Quick Plato nugget for you, as I’ve been pondering this one for a while now, and it still holds up some 2,500 years later:

I see you Plato

Plato believed there were/are three fundamental types of desires that motivate us humans and drive our pursuit of happiness:

1. Appetitive Desires - food, drink, pleasure, money to acquire these pleasures

2. Spirited Desires - Honor, victory, impressing others

3. Rational Desires - Truth, knowledge, understanding of the world

Plato’s theory is that we’re all born into appetitive desires, and that the fundamental goal of education is not simply to pour information into people’s souls, but to change their desires from appetitive, to spirited, and ultimately to rational. This turns people from pursuit of what they falsely believe to be happiness, to the pursuit of true happiness. 

Pretty cool concepts to think about while you’re receiving life-saving cancer treatment and pondering how you want to live life from this point forward.

Anyway, my flight is about to board and I should get a move on. Very pleased I was able to pull this off, beat the winter storm, and get home to my family. Flight seems to be on time. Grateful to my wife for coordinating all this, and to old man winter for closing schools yesterday and today - didn’t even have to take sick days for this trip.

The Incredible Journey to Houston

 It’s Monday morning and I’m back in Houston - somehow I made it despite the storms and such. You see, my wife Rebecca is highly skilled when it comes to flights, credit card points, hotel deals, flight changes, airport perks (due to credit card points), and all things logistics. Great for me because those elements of life stress me out. I’m much more of a “book a flight, show up to the gate really early, and wait it out” type of guy.

This is what I-94 looked like yesterday

So, I started my snowy, subzero journey along I-94 yesterday around 9:30am, trying to get to Detroit Metro Airport for a 1:30pm flight to St. Louis, where I would catch another flight to Houston later in the afternoon (Becky got a great deal on this flight, by the way). As I was putzing along, somewhere near Jackson, MI, Becky called me to inform me that the flight to St. Louis was delayed by like 6 hours, which would mean missing the Houston flight, which would throw everything off. So she got me on a 12:30pm flight to Chicago (who, according to Becky, “knows how to handle this sh*t”), and a subsequent late afternoon flight to Houston. I was surprised when the Chicago flight left on-time(ish). I got to “Club MDW” for a free meal (credit card perk I would have otherwise been oblivious to), and somehow got onto my on-time flight to Houston despite the Chicago blizzard.

Landed in Houston (Hobby Airport this time, not the usual HW Bush) on time, and it turned out the forecasted “Icepacalypse” was more bark than bite. Cruised to the hotel with an overly chatty Uber driver, caught the end of the Rams/Seahawks game, and here we are! Monday morning in Houston. All morning appointments were pushed back to the afternoon due to the storm that never happened, so I have a few hours before I head over to MD Anderson.

How to spend this time? Well, after I crank out this blog, I have some ideas. I have this unproven theory that getting my blood pumping will amplify the effects of the drugs that are, and will be, in my system today (and every day throughout 2026). Here’s my hypothesis:

1. I have already taken pirobrutinib today (about an hour ago). Its role is to block BTK signaling by the CLL cells - these signals tell the cells to multiply and to hide out in the lymph nodes and bone marrow. By blocking this signaling, pirtobrutinib prevents CLL proliferation and flushes the cells into the bloodstream, where they are sitting ducks for another drug to destroy them - that’ll be obinutuzumab today AND (starting next month) venetoclax.

2. Obinutuzumab’s role is to flag the CLL cells for destruction by my immune system. From what I understand, it’s tricky for the obinutuzumab to get into the lymph nodes and bone marrow, but it can go gang busters in the blood stream, particularly if my NK cells (part of the immune system) are fired up and ready to go.

3. According to my (unproven) theory, exercise will help pump pirtobrutinib through my body, lymph system, and through bone marrow by way of an increased heart rate (I have an especially strong marathon runner heart), blocking the BTK signaling of all those punks trying to hide out, and forcing them to drift out of their protective niches. 

Further, exercise signals to my NK cells to flood the blood stream and start looking for punks. There, they will team up with the obinutuzumab and blast cancer cells away.

Again, it’s an unproven theory and maybe the exercise does nothing more than improve my mental/physical health. But it seems like a low risk, potentially high reward strategy so I’m gonna get it going. I have a blood test early this afternoon, so stay tuned to what those #s show. Remember, the normal range for a white blood cell count (WBC) is between 4 and 11. I started treatment on January 12 with a WBC of 260(!), and my most recent blood test (January 19) showed a WBC of a mere 27. Anticipating some more good news today.

Better Than Expected Part II

 Last night in Houston as I write this. Sun is setting and I'm trying to decide if I just go to bed or stay up and watch the Indiana game. Time to reflect on this first trip:

-It was supposed to be two trips, but it got wrapped into one when we realized how the hospital wanted to keep me inpatient until Friday (we were planning on a Thursday discharge). This was a good problem to have, as the reason for the extra monitoring was elevated potassium and phosphorous levels in my blood. Turns out, when cancer cells die they release a bunch of potassium and phosphorous - so it was all carnage from the decisive game one victory mentioned in the previous post. So Becky went home Thursday to relieve her mother and be with the boys.

So that led to an otherwise dull Thursday evening/Friday morning for me to monitor phosphorous, watch the OJ documentary on Netflix (there's a new one!), and plot my escape. Blood was good to go Friday morning, which led to me getting out of there around noon, which led to a delightful stroll across the Rice University campus on my way to my hotel for the weekend.

For the weekend, I attended TWO Houston Rockets games. Friday, I sat in the upper bowl and just experienced the vibe - left early. Sunday I was planning on a slightly better seat, but was surprise level-ed up by my good buddy. I ended up courtside to watch Kevin Durant and Zion Williamson. Surreal to be that close. Thanks Austin!

Anyway, I'm pleased to report that, from a leukemia perspective, my WBC was at a 29.7 as of this morning - and that's before the infusion. We're post infusion now, so I gotta think we're getting to the normal zone (4-11ish) pretty soon here. Which is amazing. Swollen lymph nodes have all shrunk to normal size.

The game one victory analogy still applies. Headed home 1-0!

Better Than Expected

When the 2004 Detroit Pistons made their surprising run to the NBA Finals, nobody gave them much of a chance against the star-studded Los Angeles Lakers. The Pistons were a gritty defensive team with no traditional superstar, and the Lakers were the very definition of a superteam with in-their-primes Shaq and Kobe, along with surefire Hall of Famers Gary Payton and Karl Malone. Most pundits were predicting the Lakers, who had won three of the past four championships, to sweep the series. And with game one being played in Los Angeles, it was widely assumed the Lakers would open the series with an easy win.

Instead, Detroit stunned the Lakers with an 87-75 victory, playing suffocating team defense and showing that they would not be intimidated. The Pistons would go on to win the series in a mere five games, ending the Shaq/Kobe era in LA, and forcing that jerk Karl Malone to retire without a ring.

Similarly, my leukemia diagnosis was intimidating when I first learned of it. In October of 2024, my white blood cell count (WBC) was at 77,000 per microliter. Your WBC is almost certainly in the normal range between 4,000 and 11,000 - so I was about 7 times the normal upper limit. 

Before I started treatment this past Tuesday, my WBC had risen to a staggering 254,000 (25x the normal upper limit), my lymph nodes were swollen all over my body due to accumulation of leukemia cells, and my healthy blood cells were having a hard time doing their jobs due to rush hour traffic everywhere in my blood stream. It was unclear how I’d respond to the obinutuzumab infusions and the pirtobrutinib pills - would I have a reaction that stops the infusion? Would the treatment work? Or would I have a resistant and biologically challenging disease?

Well, as you may have read yesterday, my body handled the infusions well, my lymph nodes are shrinking dramatically, and after just two days of treatment my WBC sits at 109,000. Yes, you read that correctly, more than half of my cancer is dead and gone after just 48 hours. The malignant superteam I initially feared is turning out to be just a bunch of washed up Karl Malones.

Go Pistons!!

First Obinutuzumab Infusion: Turn Down For What???

So they hooked up the little clear bag to the top of my IV pole (is that what it’s called?) and connected it to my vein. We started the infusion right at noon, preceded by two pirtobrutinib pills, some benadryl, tylenol (look out, RFK!!), and a cartoonishly large Starbucks coffee that would only look normal in Andre the Giant’s hand. 

And I waited for the reaction, and I scanned my body for flu-like symptoms, and I asked the nurse if I’d be feeling them by now, and….nothing happened. No reaction at all. My body handled it no problem, and the most eventful part of that four hour infusion was how much I urinated. I got it into my head that every time I pee, that’s cancer leaving my body (that's really how it works, by the way), and I was determined to go every 30 minutes (success!). My nurse wanted to monitor my urine (color, amount, etc.), so she gave me these plastic milk jug-looking things and told me to pee in those and leave them in the bathroom - I just kept filling those suckers up.

Lil John

I’m feeling pretty great about how yesterday went. It’s unclear whether or not the fact that I had no reaction when most CLL patients do is any indication that I’ll tolerate or respond to this treatment better than average, but I’m gonna go ahead and tell myself that it is. Of the 80 or so patients who have done this trial before me, more than 80% of them were uMRD6 by the end of the trial. uMRD meaning “under measurable residual disease” and the 6 meaning out of 1 million blood cells. In other words, they test 1 million blood cells and cannot detect a single CLL cell in there. That’s the most sensitive blood test that exists, and I like to think I’ll be a part of the uMRD6 gang by the end of 2026. Also, the leukemia doctors here believe that some patients will be “functionally cured” by this trial, meaning that the disease will exist at some small molecular level, but the patient will never relapse nor require treatment again. Why not me? Sure as hell handled that first obinutuzumab infusion well.

Yesterday’s silky smooth infusion also means a high likelihood that I’ll be discharged some time tomorrow afternoon (Thursday), and the Houston Rockets have a home game against the defending champion Oklahoma City Thunder. Might have to check that out!

Today will be some more pirtobrutinib (I’ll be taking this daily for the rest of the trial), followed by the remaining 900ml infusion of obinutuzumab. Becky will likely be here soon with a Starbucks for every man, woman and child in Texas, and my urine jugs are about to get a workout. The cancer cells in my body are about to have a rough Wednesday. 

Let's Get it Started

It's Tuesday morning, and I spent the night in the hospital with some needles in my arm and an IV pole next to me. Got a decent night's sleep considering frequent interruptions from pleasant nurses drawing blood and taking my vitals. First obinutuzumab infusion is today, and I start taking pirtobrutinib pills today too. 

Before I get in to that, let me tell you about the upbeat doctor appointment we had yesterday. We got to see Dr. Chien, who was all sorts of sore from the previous day's Houston Marathon. She was so delighted that Becky and I showed up to watch her run, that she had told the rest of the MD Anderson leukemia department about it. So, when we arrived to see her, all the nurses and PAs had already heard about it, "Oh, you two are the ones who watched Dr. Chien run? Hold on, let me get so-and-so to come in here and meet you!" We got to meet Dr. Nitin Jain, who oversees the clinical trial I am starting today, and is sort of a celebrity to me - I've watched several interviews with him, listened to podcasts he has been on, and I've devoured his research papers. He just wanted to come meet us because he heard the marathon story.

We chatted with Dr. Chien for about 30 minutes, and 25 of those minutes were about running, recovery, and next year's Houston Marathon. Dr. Chien said she already signed up, so I did too! I also decided on running the Cincinnati Marathon this May, so I've got a robust running schedule ahead of me (Detroit in October as well). How am I going to pull all this off while receiving cancer treatment, you ask? Apparently the only side effects I'll experience throughout this whole thing will be today, and today only.

Today begins an infusion of obinutuzumab, which is a monoclonal antibody. In short, this antibody will "flag" the cancer cells for destruction by my immune system. I probably will feel some flu-like symptoms as my body adjusts to this drug. They're going to give me 10% of the infusion today, monitor me for TLS (tumor lysis syndrome), then administer the remaining 90% tomorrow. The biggest danger is that the drug works too well. When the cancer cells are killed, they all need to get processed through my kidneys and out of my body by way of urine. From what Dr. Chien tells me, this first infusion is going to kill so many cancer cells that my kidneys might be overwhelmed. Better start hydrating.

I'll also be starting pirtobrutinib, which is a BTK (bruton tyrosine kinase) inhibitor and is the trial drug provided by Lilly. CLL cells reproduce by way of BTK signaling, and this drug blocks that signal, resulting in long-term disease control. Pirtobrutinib is a 3rd generation BTK inhibitor, preceded by acalabrutinib and zanubrutinib (2nd gen), and ibrutinib (original gangster). Before ibrutinib came around in the early 2010s, there was nothing. CLL patients would just sort of slowly get sicker and sicker, then die. Ibrutinib gets the "brut" from bruton, the "inib" from inhibitor, and the "i" as a nod to Steve Jobs - the iPhone came out shortly before the drug. The story of Ibrutinib is a wild one that could be its own separate blog post, but in short, it sort of happened by accident and revolutionized CLL treatment. It changed the CLL outlook from "certain slow death" to "controllable for years", and today I'll be getting version 3.0 - more effective and with fewer side effects. The doctors know it's damn good, and this trial is trying to determine just how good it really is.

Ok, we're about to get started so I gotta run. Becky brought a bunch of Starbucks to the hospital room just now, and there are a number of thrilled nurses walking around here. She has a way of bringing joy wherever she goes.

Houston Marathon, Rice Owls Basketball, and that Bad Guy From Indiana Jones

It’s Monday morning, and I’m writing this from the hotel room while my lovely wife sleeps a few feet away - trying to type quietly here. We got to Houston late Saturday night (better deal on flights that way), which put us in prime position to go check out the Houston Marathon on Sunday morning. 

When we left Dr. Chien last week, I told her I’d be tracking her on the app from afar, but we did one better and showed up on the course! We saw her at about 25.5 as she was nearing the finish - weren’t exactly sure how we’d find her as we’ve only seen her wearing a hospital mask - but the app gave us her bib # and the crowd was pretty sparse at that point. She recognized us, and I’m looking forward to chatting with her about the race during my appointment later today.

After the marathon, Becky and I got back on the train to head to “Rice Village” which is the college town (Rice University) right next to the Texas Medical Center where MD Anderson is located. Becky was interested in getting nails done, etc., and I shopped around for sporting events I might be able to attend. Turns out, Rice was tipping off against Charlotte as soon as we got to Rice Village, so I jumped online and got a courtside ticket for $20. Great game (Rice lost by one) and a fun experience.

Anyway. Today’s appointment starts at 1:30pm and, from what I understand, it’s going to be a review of all my tests/scans from last week (they are who we thought they were!), an explanation of the drugs I’m starting tomorrow (I have a pretty good idea of what they do), and a short trip to pick up a prescription (two floors up) for a BTK inhibitor called pirtobrutinib (more on this later). Then, it sounds like they’ll admit me into the hospital for the night (where I’ll watch the Houston Texans playoff game), then start destroying cancer tomorrow morning.

Since I was diagnosed with cancer in October 2024, I have repeatedly told the disease (often out loud and laced with expletives) that it has chosen the wrong body to invade. I’m too smart, too fit, too optimistic, too resourceful, and too resilient. It picked the wrong guy or, to quote the really old guy from Indiana Jones and the Last Crusade, “he chose poorly.”

For those unfamiliar with that movie (you’re missing out), Indiana Jones is trying to find the Holy Grail, and there’s this Nazi dude who keeps following him. The Nazi has to choose which of the dozens of cups is the actual grail, thinks he knows for sure which one it is, picks the wrong one, and dies gruesomely. Here’s the scene:

This leukemia that’s floating around in my blood and bone marrow is about to learn the same harsh lesson - it chose poorly.

They Are Who We Thought They Were

 Good ol’ January 6th. I’ll spare you my thoughts on this historical date, choosing commentary on yesterday’s testing/scans in its stead.

There was a blood test, a false alarm hey this guy’s potassium is emergency-level high, an EKG of sorts, a nuclear medicine (!?) appointment with a former UM football player, a CT scan, a followup with the wonderful Dr. Chien, and a lovely dinner with my wonderful wife who was with me the whole time.

The results of all this, you ask? To quote longtime NFL coach Dennis Green, “They are who we thought they were!” It’s the same disease that we’ve known about since 2024 - chronic lymphocyctic leukemia with an 11q and 13q deletion. This is great news, because we’ve got a great gameplan to handle that starting next week. 

When I first met Dr. Chien in 2024, I had run the Seattle Marathon the previous day, and was pretty darn nervous. She put my mind at ease, informing me that they have a clinical trial at MD Anderson involving a state-of-the-art combination of proven drugs that are extremely likely to drive me into a complete remission that will last for years, maybe decades, maybe forever. This is still the case, and I learned yesterday that, should I ever relapse (the cancer returns somewhere down the road), there will almost certainly be even better treatments available for me. So we’re pretty goshdarn optimistic about this whole thing.

To say Dr. Chien is wonderful would be an understatement. Beyond her leukemia knowledge and experience, and the fact that she will officially begin saving my life next week, Kelly Chien is a delightful conversationalist and an avid marathon runner. In fact, she’s running the Houston Marathon this Sunday. Great doctor-patient match.

Sean vs. Leukemia

 January 5, 2026

Cancer Treatment Blog #1 - How we got here

It’s 7am here at the Hyatt House Hotel in Houston, TX. My first appointment is at 9am today (blood test), followed by a slew of other testing appointments - CT scan, etc. An ideal scenario, believe it or not, would be to learn that everything is exactly the same as when I was tested a little over a year ago at the same place. The same being I have chronic lymphocyctic leukemia - deletions 11q and 13q - and that I’m an otherwise healthy dude.

So how did we get here? In October of 2024, shortly after I completed a 20 mile training run (getting ready for the Seattle Marathon), it was brought to my attention that I had a lump on my neck. This lump was accompanied by a few others, so I got them checked out, and it turns out they were (and are) swollen lymph nodes due to an accumulation of malignant blood cells. 

I’ll probably never know what caused this (my doctors tell me it’s caused by “bad luck”), but at some point in the late 2010s/early 2020s, one or more of my B cells (the white blood cells responsible for fighting viruses) got some wires crossed, mutated into a cell that was missing a couple chromosomes (11q and 13q for me), then started making copies of itself. These copies continued to slowly copy themselves until I got the aforementioned swollen nodes.

The cancerous cells, on their own, are harmless - they just sort of float around in the blood and lymphatic system and effectively do nothing. However, these sons of guns don’t die like they should, and when they continue to multiply, they start to crowd out space for the other healthy cells that have essential jobs - fighting disease, repairing, carrying oxygen to vital organs, etc.

So that’s what’s happening to me now. Those malignant cells have gone too far, they’re getting in the way of the good guys, and it has come time to wipe them out. That’s why I’m here in Houston, getting all this testing done today, so we can decide definitively what we’re dealing with, and then give it hell next week January 12.