A plan begins to take shape: FOLFOX, a port on Wednesday, and the fear of "always"

Today was the consultation with Northwest Cancer Centers, and I'm writing this from a place of real exhaustion. I'll be honest — I've been very tired, and underneath that tired is a sadness I haven't been able to outrun today. So if this entry feels quieter than usual, that's why. The plan is starting to take shape, and I want to walk through it the way it was walked through with me, in plain language, so the people who love me can follow along.

**The headline**

We are formulating a treatment plan that includes chemotherapy using a regimen called **FOLFOX**. This is the standard, first-line chemotherapy approach for colorectal cancer in my situation, and it's been used for more than two decades with a well-understood track record. It is not experimental. It is the workhorse — the regimen oncologists reach for first because the evidence behind it is strong.

**This week: the port goes in Wednesday, and we begin**

The pace is fast. **Wednesday is the port install** — a small outpatient procedure to place the device under the skin of my upper chest that every infusion, blood draw, and pump connection will run through for the duration of treatment. And from there, the plan is to go **straight into the FOLFOX approach**. No long pause between getting the port and starting chemo. That's by design — once a plan is set, oncology generally doesn't want momentum to stall — but I won't pretend it isn't moving faster than my heart is ready for.

**Still in motion: University of Chicago and the biopsy**

A couple of important pieces are still landing:

- **University of Chicago consultation** — we have an upcoming appointment with UChicago's oncology team, who will continue to review the case alongside Northwest. A second set of expert eyes on a plan this consequential is something I want, not a sign that anything is wrong with the current plan. Academic centers like UChicago often catch nuance — clinical trial eligibility, molecular markers, sequencing options — that's worth having in the conversation before we're too far down the road.
- **Biopsy results** — we are still waiting on the full biopsy results to come back. Those results can refine the plan: confirming the exact tumor biology, checking for specific molecular markers (like MSI status, KRAS, BRAF, HER2), and clarifying whether anything should be added or adjusted. FOLFOX is the spine; the biopsy will tell us if there are additional tools to layer in.

So: we start the spine of treatment this week, and we keep refining as more information comes in. That's how modern oncology actually works — you don't wait for every answer before you act, because the cancer doesn't wait either.

**What "FOLFOX" actually is**

FOLFOX is not one drug. It's a cocktail — three medicines given together on a schedule, and the name is just an acronym for the ingredients:

- **FOL** — *Folinic acid* (also called leucovorin). This isn't a chemo drug itself. It's a vitamin-like helper that makes the next drug work harder and longer. Think of it as an amplifier.
- **F** — *5-Fluorouracil* (5-FU). This is the main chemotherapy. It interferes with cancer cells' ability to copy their DNA, which stops them from dividing. It's given two ways at each visit: a quick "push" dose through the IV in clinic, and then a slow continuous infusion over about 46 hours that I'll wear home in a small portable pump attached to my port.
- **OX** — *Oxaliplatin*. This is the second chemotherapy drug, a platinum-based medicine that damages cancer cells' DNA so they can't repair themselves. It's given as a longer IV infusion in clinic on day one of each cycle.

**How a cycle works**

FOLFOX runs on a **two-week cycle**. A typical cycle looks like this:

1. **Day 1 — in the chair (about 4–6 hours):** Pre-meds (anti-nausea, steroids), then oxaliplatin and leucovorin running together, then the 5-FU push.
2. **Days 1–3 — at home with the pump:** I leave clinic with the portable pump infusing 5-FU continuously for roughly 46 hours.
3. **Day 3 — disconnect:** A nurse (in clinic or sometimes at home) disconnects the pump and flushes my port.
4. **Days 4–14 — recovery:** The body rests, recovers, and counts rebuild before the next cycle begins.

The full course is typically planned in cycles — the exact number will be confirmed as we finalize the plan, but FOLFOX courses commonly run somewhere in the range of 6 to 12 cycles depending on stage, response, and how my body tolerates it.

**What to expect — the honest version**

The team was straightforward with me about side effects, and I want to be straightforward here too. I'll say plainly: **I am very concerned about the side effects.** Reading them on a list is one thing. Knowing they're coming for *your* hands, *your* throat, *your* energy is another. I'm letting myself be scared about this part rather than pretending I'm not.

- **Cold sensitivity** is the signature side effect of oxaliplatin. For a few days after each infusion, cold air, cold drinks, even opening the freezer can cause sharp tingling or a "your throat is closing" sensation in the hands, feet, and throat. It passes, but it's startling. No iced drinks, gloves for the fridge, scarves outside.
- **Nausea** — managed aggressively with pre-meds and take-home anti-nausea drugs. Better than the reputation, but real.
- **Fatigue** — cumulative. Usually worst in the days right after the pump comes off, easing as the cycle goes on, but building over the course of treatment.
- **Neuropathy** — tingling or numbness in fingers and toes that can build with each cycle. The team monitors this carefully because it's the main reason oxaliplatin doses sometimes get adjusted.
- **Low blood counts** — checked before every cycle. If counts are low, we wait a week. That's normal and expected.
- **Mouth sores, taste changes, GI changes** — manageable with good mouth care and diet adjustments.

**The hardest part of today**

I want to write this part carefully, because it's the part that's been sitting heaviest on me.

What I'm really wrestling with tonight is that **there doesn't seem to be a clean "this will be over on X date" answer.** With a broken bone, you get a cast for six weeks and then it's behind you. With this, even after the initial FOLFOX course finishes, the honest picture is that I'm likely to be in *some* kind of ongoing relationship with treatment — scans, surveillance, maintenance therapy, follow-up labs, possibly more lines of treatment depending on what the body does. The vocabulary shifts from "cure by this date" to "manage, monitor, respond."

That is the part that frightens me most. Not any single side effect, not the pump, not the port — the dawning sense that the moment of diagnosis quietly redrew the map, and on this new map there isn't a clear edge marked *"and then you walk off it and never look back."* I keep waiting for someone to hand me a finish line, and instead I'm being handed a long road with check-in stations.

I don't have a tidy resolution for this feeling tonight. I'm not going to write a paragraph that ties it up with a bow, because that wouldn't be honest. What I will say is this: even a long road has good stretches, and people who've walked it before me describe seasons that feel almost normal — years where the appointments are quieter, where treatment is in the background, where life is unmistakably *life* again. I'm trying to let that be true at the same time as the fear is true. Both, not either.

**Where I am tonight**

I'm tired. I'm sad. I'm scared of the side effects. I'm scared of "always." And — this is the strange part — I'm also a little steadier than I was yesterday, because at least I know what Wednesday looks like, and what next Monday looks like, and roughly what the next few months look like. The unknown was its own weight. Trading some of it for a plan, even a hard plan, is not nothing.

I'll write more when I have more energy. For now, thank you for reading, for being here, and for not needing me to be okay today.

— GoGo

*This is my personal journey in my own words. I'm learning as I go and sharing what I understand at the time I write it. Nothing here is medical advice — please always defer to your own care team for your own decisions.*