A day in the life...

Trigger warning: Some photos of needles and stuff.

Today’s my last day in the outpatient clinic here at NIH, as long as my blood tests come back OK. I’ve had multiple blood draws every day in the last week as the docs got my baselines and monitored my progress with the drugs. In particular I’m now on multiple drugs that can have significant impact on white blood cell counts and immune system health; they also cause a risk for tumor lysis syndrome (TLS) where the cancer dying off so fast actually creates dangerous toxicity in the body. These things can only be detected through blood tests, so I’ve been a bit of a pincushion this week.

I’m back at the beginning of July for a 2-week inpatient stay where the docs will add venetoclax (the “V” in “ViPOR”) to my regimen, both making the whole acronym sound cool, and secondarily, is the most powerful of the tumor-killers. It’s also where I’m at the highest risk for TLS, so that’s why I’ll be inpatient where they can get me on fluids/electrolytes if needed.

Some people asked about what my time here at NIH and my treatment in general looks like on the day-to-day.

First, the wristband. They scan it for pretty much everything they do (along with asking my name and DOB). In general it’s been fun to watch all the different safety checks and cross-checks the medical team does throughout all phases of treatment... you can tell they’ve learned a lot about minimizing mistakes in the last few decades.

Then, the IV. Every day I’ve had blood draws and/or infusions to do, so this goes in pretty much right away. I’m looking forward to a few weeks without crap dangling from my arm.

During my inpatient stay, I’ll get a PICC Line installed so they don’t have to keep needle-jabbing me. Thankfully I’m a pretty, uh, “veinous” guy but it’s obviously not comfortable. A couple of people have asked if I’ll get a port installed; the answer is no — that was on the table for my other chemo-focused treatments, but not for this one.

Then, no long hospital stay would be complete without photos of the hospital food...

Hey, I didn’t say I was here to inspire you. I will say the food’s actually been really good. Dangerously, they have cookies & cream milkshakes — which some of you know are my kryptonite. In general though I’m trying to eat pretty simply and towards something “anti-cancer-y”. At home we’ve been eating and drinking a lot more in the way of smoothies and juices and green veggies, I haven’t been drinking alcohol, and I haven’t eaten much meat, especially red meat, for a while — though it’s been hard to stick to good habits while I’m in travel mode.

Now that the food’s down, next up — a pharmacy’s worth of pills. This, more than anything, is the picture of my treatment.

Any given morning I’ll be taking around 10-15 pills, thankfully only once a day. These here are the magic of the whole thing. While I do have one infusion drug (which will mean I’m back in DC every few weeks), most of my treatment comes in pill form. A few of these are highly-targeted drugs that don’t just “kill cancer cells” — they target very specific operational functions of a cancer cell (for example, the receptors that tell a normal cell to die when its job is complete, which tend to be incorrectly turned off in cancer cells).

Part of the reason for this combo I’m taking is also that a couple of the drugs have effects that are synergistic (a word I use cautiously, knowing Jay is reading this) — used individually, they are not necessarily super effective. But together they see dramatic performance boosts. For example, venetoclax (V in ViPOR) and ibrutinib (I):

Michael E. Williams, MD (UVA)

The mechanics of the synergy (that really was for you, Jay) are not precisely understood, but in general the theory goes: if you attack all the different individual genes and receptors that perform various functions in a cancer cell at once, it has no other way “out”, and you give yourself a real chance of killing it for good.

I’m also taking a couple of other support drugs that are either shown to increase efficacy of treatment, or to manage things like nausea and pain, as necessary.

Those all go down the hatch (and for two days per three-week cycle, I’m also hooked up to an infusion). Then it’s just a lot of waiting. Writing. Reading. Coding. Napping. A game here and there. Regular checks on vitals and side effects. Wait some more. Once I’m disconnected from the infusion, I try to walk around the Clinical Center.

I ALSO FOUND A PIANO

Back to the clinic. Wait some more. Take a blood test, to make sure my internal chemicals aren’t going sideways, especially any indications of TLS. Wait for results. Go to hotel. Maybe watch a movie. Maybe just crash. Sleep. Repeat daily.

I’ll head home tomorrow evening and will take pills steadily for the next two weeks until my “off week” for this cycle, then I’m back to DC for the big hairy two-week stay. Esther and my family are going to come visit for a bit while I’m there, so I’m looking forward to that (and mostly hoping I won’t just be in a bed the whole time).

Just three days in, I feel better than I have in weeks — it’s probably a combination of the support drugs (STEROIDS ARE GREAT BRO), actual changes to my tumor (which had been making me really uncomfortable—this stuff does start to work fast), and frankly the fact that I’m just finally out of the ambiguity and into treatment. I just my blood work back — good to go! — and since today is the first day I’ve been out early enough to enjoy the sunshine and outdoors, that’s where I’m headed next!

Finally, never mind this cancer shit — my awesome cousin Kenz sent me this and I can’t stop laughing, so just go watch it: https://www.instagram.com/reel/CeGfC2dA-Tb/?igshid=NWRhNmQxMjQ= Remember it’s silly to be a human sometimes.

Have a good week, everyone.