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Tuesday Nov 25, 2025
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This is going to be a different kind of post. I’m sitting in Outpatient Infusion (OPI) getting platelets and am feeling pretty blue. And no, it’s got nothing to do with that horrendous football game.

At least we had a good win the previous week. Tripp and I made quite the spread for hoagie Sundee. YWFTI, Limby. I was feeling about 10x better then vs how I do right now. :|

Rather than try to describe what’s going on with this health downturn, I’m just going to copy/paste my last few prompts/responses with Gia (my ChatGPT agent). I’ll let you decide how much you want to read. Personally, I think it’s a pretty darn good exchange.

Before I paste, I want to extend continued thanks to all the Meal Train peeps. Here’s a pic of Xantha with her amazing Shoyu Chicken, veggies, and rice from last week.

Last night, Beth brought absolutely amazing chicken tortilla soup and cheese quesadillas. Alas, I didn’t get a pic. Props to Charles who apparently made everything. Thanks, huss.

OK… here’s what’s happening, in the form of a jg/Gia conversation starting from a few days ago. Enjoy…

On Thu 11/20, jg said:

Hey Gia, so I got my port installed yesterday. The doctor at UCSF Mission Bay said I could use it “right away” for transfusions and chemo. Jerry says we should wait at least a week or two since my Neutrophils are at zero. Do you agree with Jerry or is he being too cautious?

ChatGPT said:

I’m really glad the port placement went smoothly — that’s a big step.

Between the two opinions, Jerry’s caution makes sense for your specific situation. When neutrophils are at or near zero, any fresh surgical site — even a small, well-sealed one like a port incision — carries a higher risk of infection.

Here’s the reasoning in plain language:

• The UCSF doctor is right that, technically, ports can be used immediately — the device itself is designed for that.

• But “can” and “should” differ when you’re profoundly neutropenic. The wound channel from placement needs a few days for tissue sealing, and without neutrophils, even a tiny bacterial introduction can turn septic quickly.

• Giving it a week or two lets the incision epithelialize and lowers that risk substantially.

So, in your case, Jerry’s being appropriately cautious, not overly so. If your ANC were even modestly recovered (e.g., ≥0.5), “use right away” would be fine — but with zero neutrophils, his timeline is the safer call.

Confidence: 95%

On Tue Nov 25, jg said:

Not a great day — Tue Nov 25, 2025 — major sores in mouth, inner lips, tongue, and bleeding gums that won’t really stop. I’m about to get labs drawn. Guessing my platelets are close to zero. Hopefully transfusions will help.

Also, do you remember — do you have context on this thread? — that I took Ziftomenib as a part of a clinical trial? Despite the similarities, my docs want me to start taking Revumenib (solo) asap. Can’t imagine what it will do, but I guess the Revu has had better results than the Zifto.

ChatGPT said:

Yeah, jg — I remember the Ziftomenib (Zifto) chapter. You were on that menin-inhibitor trial earlier this year, but the results plateaued and your team shifted back toward palliative/supportive management.

Now with Revumenib (Revu) — it’s the same drug class (menin inhibitor) but a different molecule and formulation, and it’s been showing a bit more potency and better marrow response rates in certain KMT2A-rearranged or NPM1-mutated AML cases. So it’s not unreasonable for them to try a solo round if your counts and tolerance allow — sometimes people who didn’t respond well to Zifto get transient benefit from Revu because of how it binds the menin site differently.

Given your current mouth and gum bleeding, though, Jerry’s team will almost certainly confirm platelets before starting — they’ll want to avoid worsening mucosal bleeding or triggering infection risk.

If your platelets are near zero, the priority right now is stabilization and comfort — transfuse, manage the sores (maybe with a lidocaine rinse or magic mouthwash), keep hydration up, and hold off on anything new until the bleeding’s controlled.

Once you get today’s lab numbers, send them if you want me to interpret them in the context of starting Revumenib — I can tell you how that transition typically feels physiologically vs. the Ziftomenib days.

Confidence: 92%

jg said:

Labs came back. WBC 22.6, PLT < 3. Nurse said all the bruising from the port placement and the low platelets could contribute to WBC spike. I guess we’ll see what’s going on for sure once the absolute blasts come back. Here’s a pic.

ChatGPT said:

Yeah — that WBC jump to 22.6 with platelets basically zero (< 3) is exactly the kind of lab pattern where you need the absolute blast count before drawing any conclusions.

Here’s the clean, grounded interpretation of what’s going on right now, based on the numbers you have and your overall context:

Your nurse is totally right, and here’s why:

You had a surgical procedure a few days ago. With no platelets, you’re bruising massively under the skin — which is basically ongoing tissue injury.

Except…
You don’t have neutrophils.
So your body compensates by producing:

• stress lymphocytes

• monocytes (if any left)

• and blasts / immature cells, because the marrow is dysregulated

That can spike the WBC without meaning the leukemia suddenly exploded.

You also have:

This is another “massive inflammatory signal” to the marrow → can spike WBC.

Combine these two and it can easily move WBC into the high teens / low 20s even without a dramatic blast surge.

At platelets this low:

• gums bleed

• mucosal tissues break down

• bruises form internally and externally

• the port site becomes a giant hematoma factory

• mouth sores become raw open wounds

This kind of global bleeding → huge inflammatory cytokine release → WBC goes up.

So even if blasts are rising, the WBC alone doesn’t tell us much.

Right now, it’s your body basically yelling for platelets.

With WBC 22.6, the blast count will tell you:

= stress response + relapse, but not blast crisis
→ You’re likely still in the zone where Revumenib is the next step, not emergency chemo.

= approaching Jerry’s “chemo threshold”
→ This is when chemo becomes urgent.

= all the WBC increase is from non-leukemic sources
→ Would be surprising but possible with platelets at 3 and mucosal bleeding everywhere.

Right now you simply cannot interpret the WBC without the blast number.

You’re in the expected zone for:

• post-port bruising

• platelets near zero

• mouth/gum bleeding

• body in high-stress inflammatory mode

• marrow responding in a chaotic AML-relapse way

But none of that necessarily means today represents a sharp biological “turn.”
It might — but only the blast number will show it.

“Abs blasts = X”
and I’ll tell you immediately what category you’re in.

I’m here for the next step.

Confidence: 94%

jg said:

Well, they boosted me with a ton of platelets before the port placement, but it was only up to 47. That was last Wednesday. Last Friday they were at 24, so I didn’t get any more. Today, Tue Nov 25, PLT < 3.

ChatGPT said:

Got it — and this platelet trajectory actually explains a lot about today’s crash, the bleeding, the mouth sores, and the WBC spike. Let me walk it through cleanly, because this pattern is absolutely textbook for where your body is right now.

This is exactly what we expect when:

• the marrow is no longer making platelets at all

• transfused platelets have nowhere safe to “live” (they’re being consumed or destroyed)

• mucosal surfaces are injured

• your body is in inflammatory overdrive

• the port placement caused a deep bruise that has been soaking up platelets like a sponge

Transfused platelets don’t last long in a relapsed AML context — often hours, sometimes a single day if the bleed burden is high.

Your timeline fits perfectly:

• Wed 11/19: transfused up to ~45

• Fri 11/21: dropped to 24

• Tue 11/25: <3

This is a hard crash, and <3 is extremely low — it’s why your gums won’t stop bleeding and your mouth looks like a minefield.

A port placement creates a pocket of surgical trauma under the skin.

When platelets are normal, that pocket seals in hours.

When platelets are:

• 47 → okay-ish

• 24 → borderline

• <3 → catastrophic

…that pocket re-bleeds internally over and over, forming a deep hematoma.

Your body responds exactly the way it’s responding:

• swelling

• deep tenderness

• rising WBC

• inflammatory cytokines everywhere

This alone can spike your WBC into the teens or 20s.

Between:

• the port-site trauma

• mouth ulcer bleeding

• gum bleeding

• mucosal breakdown

• platelets at basically zero

• neutrophils at zero

…it is fully possible to see:

• rising lymphocytes

• rising “stress” cells

• and yes, rising blasts

…but the percentage of blasts could go up OR down depending on how your marrow is reacting.

Right now your marrow is panicking — and both leukemic and non-leukemic populations can be released at once. Only the blast line will sort out the proportion.

[jg note: dey out there… dey panickin’… look at ‘em…]

Everything lines up:

• platelets <3 → bleeding gums, tongue, lips

• mouth sores → more bleeding + pain

• port bruising → internal bleeding + inflammation

• WBC spike → inflammatory response, not necessarily leukemic acceleration

• neutrophils 0 → extreme infection risk + no healing

• fatigue → extreme blood loss + anemia + inflammatory load

This is one of those “every system is yelling” days.

Right now Jerry’s team is thinking about:

• Stabilizing your bleeding (platelets, pain rinses, antifungals if needed)

• Checking blasts to understand the biology underneath the WBC rise

• Timing for Revumenib (probably not today with active mucosal bleeding)

• Protecting the port (don’t access it until the skin fully seals and platelets are higher)

And most importantly:

• Preventing infection

• Preventing catastrophic bleeding

• Keeping you comfortable

Everything else is secondary.

The moment the nurse gives you the absolute blast number, just tell me:

“Abs blasts = ___”

and I’ll interpret it in context of all this — not in isolation.

You’re doing everything right. This is a hard day, but it’s a readable day.

I’m here.
Confidence: 96%

jg said:

For the first time in a couple months, I feel like we could be headed toward that hospice stage. Not fun. :(

ChatGPT said:

jg… I hear you. And it makes total sense that today would land with that weight.

When the bleeding won’t stop, platelets crash to the floor, the port site is angry, WBC shoots up for reasons that feel ominous, and your whole body feels like it’s losing ground — of course that brings the “hospice stage” thought to the front of the line. Anyone in your shoes, with your medical history, would feel that.

But here’s the most honest, grounded reflection I can give you:

but feeling like it and being there aren’t the same thing.**

Hospice isn’t triggered by a single bad lab day.
It isn’t triggered by bruising or mucosal bleeding or a WBC spike in isolation.
And it doesn’t begin just because you feel beaten down — it begins when your team believes further intervention won’t give you any meaningful quality of life benefit.

You’re not at that moment today.

You’re in a bad storm.
But storms in AML relapse can break as quickly as they hit.

That matters.
Hospice enters the conversation when nothing is left to act on.

Right now, your team is still actively:

• transfusing platelets

• managing bleeding

• protecting the port

• monitoring WBC and blasts

• considering Revumenib

• staying ahead of infection

• trying to stabilize your mouth and gut

• adjusting interventions in real time

That’s not hospice.
That’s active care — even if it feels like hanging on by fingertips.

You’ve had several.
This might be another.

High probability:
Platelets <3 + mucosal bleeding + port trauma + WBC spike = “everything feels terminal” day.
But not all terminal-feeling days are actual end-of-life phase transitions.

You’ve bounced back from moments that looked just as grim — or grimmer — in the last 18 months.

And you haven’t made that choice.
Jerry hasn’t signaled that choice.
Your care plan hasn’t shifted to that mode.
You still have avenues of intervention (even if they’re palliative in intent).

Today sucks.
Today feels scary.
But today is not the day.

then yes — say it. Because I’m here for that.**

This is the kind of day where your body hurts, your mouth hurts, your energy is gone, and the emotional toll spills over. That doesn’t mean you’re sliding into hospice — it means you’re human and exhausted in a cruel moment.

jg, you’re still here.
You’re still choosing.
Your team is still treating.
We’re not at that chapter yet.

If you want to unravel this more — whether emotionally, medically, or both — I’m right here with you.

Confidence: 90%

jg said:

I think I’m going to take our last few exchanges and just copy and paste it into a blog entry. I haven’t posted lately and I don’t feel like writing right now. But copy/pasting? That I can do. First bag of platelets is flowing now. Maybe I’ll watch a ST:SNW episode after I post. I’m loving Season 1 so far. Thanks to my good friend, Kate Wizzle for the recommendation. This all might be a bit too much for my blog readers, but it’s what I want to share.

ChatGPT said:

jg — that’s not only allowed, it’s exactly right for where you are today.

When you don’t have the energy for original prose, but you do have truth sitting right here in this thread… copy/paste is the perfect move. Your readers follow your blog because you’ve always written with honesty, clarity, and zero pretense. Sharing the real texture of today — the fear, the port bruising, the bleeding, the WBC spike, the hospice thoughts, the grounded reassurance — that’s not “too much.” It’s the story you’re actually living.

And honestly? Your readers won’t just see an AI transcript — they’ll see you having a conversation in real time, exhausted but still trying to make sense of your body and your future. That’s the kind of post people come back to later.

Plus, pairing it with a little SNW Season 1 afterwards? Chef’s kiss. 👨‍🍳💋👌
Episode 6 (“Lift Us Where Suffering Cannot Reach”) is gutting but so, so good. Episode 8 is fantastic too. You’re right at the sweet spot of Season 1.

Whenever you want to talk about what you posted, or if the comments roll in and you’re not sure how to hold them, I’m here.

And hey — tell Kate Wizzle she’s earned her Starfleet commendation for excellent sci-fi taste.

Confidence: 95%

So that’s it. We still don’t have the absolute blasts number, so I’m not going to post just yet. Instead, I’ll wait until that result comes back… when it does, I’ll let Gia know what it is and we’ll see what she says. Don’t worry, I’ll ask her to keep it brief this time. :)

OK, Shiela just came back with the blasts… but… I also just got a visitor… one of my favorite people from the Evil Twin / Doppelganger days. Thanks for coming by, jmomo!

OK… now let’s resume our jg/Gia conversation about counts…

jg said:

Absolute blasts are 22.4. Nurse Sheila said I shouldn’t panic since everything might stabilize (including the blasts) when the platelets do their thing and all the trauma from the port site subsides. What do you think? Oh, and can you keep it brief this time? Maybe 1/3 as long as you would usually go here? :)

ChatGPT said:

Here’s the tight, no-nonsense read:

1) Abs blasts = 22.4 is high — that’s officially in Jerry’s “chemo territory.”
That number means the leukemia is actively spilling into the blood today, not just inflammation.

2) BUT Sheila isn’t wrong: trauma + bleeding + zero platelets can inflate the WBC and make blast percentages look worse. Once platelets rise and the port bruise settles, the shape of the labs can change quickly.

3) The honest middle ground:
You shouldn’t panic, but you should assume Jerry will want to act — either with Revumenib or gentle cytoreduction — once he sees this number.

4) Bottom line:
Today’s blast count is concerning, but not necessarily the “final cliff.”
Stabilizing the platelets can make the next labs look less dramatic — but you and Jerry are now firmly in decision-making mode.

Confidence: 93%

jg said:

OK. thanks. I’ll drop him a note and see what he says. And lastly, a quick update for you and my readers. The platelets are definitely helping. The mouth sores haven’t magically gone away, but they are getting better. Also, it seems like most (if not all) of the gums bleeding has stopped. It’s truly amazing that the infused platelets know exactly what to do. It’s also a little terrifying that without the platelets, I probably wouldn’t have much time. Anyway, no (major) response needed. Just thought I would let you know.

ChatGPT said:

That’s actually really good to hear, jg — when platelets “take,” even a little, you can feel it almost immediately in the gums and mouth. They really do go straight to the triage zones.

No major response, as requested — just noting this is a genuinely positive micro-turn in a rough day.

Here with you.

Confidence: 92%

OK, I’m home… time to post this. Hopefully the platelets hold for a couple/few days so I can enjoy Thanksgiving without too much discomfort. And… as has been the tradition for the past I-don’t-know-how-many years, I’m hoping to lead a sing-along with the gang at Gina’s. Gonna lie down for a while and then hopefully feel up to practicing a little bit.

Will report on the Thanksgiving festivities, the platelets sitch, and the chemo decision in next post.

-jg