Catching up after pump removal, end of cycle exhaustion

I am playing catch up a little bit. My brain has been incapable of forming sentences and complete thoughts, and so many people have reached out for updates that I just did not have the energy to reply to anyone.

If I could sum it up, the end of the chemo cycle, when the pump is doing its work at home, is physically exhausting in a way that is hard to articulate. The level of fatigue has honestly scared me. There are very few moments in my life where I cannot sit down and feel cognitively astute or able to articulate myself, and this stretch has been one of them.

With that said, my pain is well managed right now. I am on a serious regimen of OxyContin extended release on a schedule, with OxyCodone IR for breakthrough pain when the liver becomes really uncomfortable. The overriding labor I am enduring now has to do with getting through the intense chemotherapy treatments and side effects. I have moved from managing severe pain to managing and anticipating really intense side effects.

Friday I was scheduled to have the pump removed, and we have now decided to add an infusion day along with that, to try to get ahead of dehydration, nausea, and overall energy, while also lowering inflammation. Not only will I be doing this on pump off days, I will be adding these infusions in between my chemo sessions every single Wednesday.

It was quite alarming to look at my schedule for June. It used to show a beautiful trip to Italy I had planned with my family, along with the usual hustle and bustle of work travel and activities. It is startling how different my world looks on a minute by minute basis. My Google colleagues will understand this, I am sure, as we manage our days literally to the minute with back to back meetings, in person or virtual, all day every day. I will not say it is completely a bad thing that my schedule is looser than it has been in at least fifteen years, but it is a life change nonetheless.

One thing we have learned as the genetic testing results have come back is that I am negative for the KRAS gene. That has opened the door to add some other targeted options to our plan. As you can see, we are working in the most aggressive manner possible, mostly to control the disease in the liver.

The little robot on my arm: the UDENYCA Onbody Injector

After every chemo cycle, my care team sends me home wearing this small white device stuck to the back of my arm. It is called the UDENYCA Onbody Injector, and the medicine inside is pegfilgrastim-cbqv, a long-acting form of a drug that tells my bone marrow to crank out more white blood cells (specifically neutrophils) after chemo wipes them out. Low neutrophils (neutropenia) is one of the most dangerous side effects of chemo because it leaves you wide open to infection, so this shot is a big deal for keeping me out of the hospital.

What I find genuinely fascinating about it:

- It is applied to my arm in the infusion chair, right after chemo, while the prefilled syringe loads the dose into the device.
- A tiny needle deploys into the skin to start, then retracts. After that it just sits there quietly for about 27 hours.
- Around the 27 hour mark, it wakes up, deploys a soft cannula, and slowly delivers the full dose over roughly 5 minutes. You hear soft clicks and beeps while it runs.
- The little yellow window on the front has a status bar that moves from FULL to EMPTY so you (and whoever is helping you) can watch the dose go in.
- A green light blinks while it is working normally. If something goes wrong (it comes off, the medication is too cold, the dose is interrupted), the light turns red and it beeps so you can call the 1-855 number printed right on the device.
- It means I do not have to drive back to the cancer center the next day just for a single injection. The device does it for me at home, on its own schedule, while I am on the couch.

It is wild to think a sticker on my arm is doing the work that used to require another whole appointment. Modern oncology is part chemistry, part wearable tech, and this little thing has become one of the most important quiet helpers in my cycle.

The pain med chase, and the balancing act nobody warns you about

We just spent way too much energy on a wild goose chase trying to refill my long-acting pain medication (the extended release OxyContin that holds a steady baseline of relief in the background while the immediate release OxyCodone handles breakthrough pain). Between pharmacy stock issues, controlled substance rules, and the fact that this script has to be physically routed in very specific ways, it took multiple calls and a lot of patience. We are finally back on track.

The thing I never expected to have to think about so carefully is the tug of war happening inside my body right now:

- The irinotecan part of FOLFIRINOX is famous for causing intense diarrhea. Left unmanaged, that can spiral into real dehydration very quickly, which is its own emergency.
- On the opposite end, opioids slow everything down. So the same pain meds that let me actually function during a cycle also push hard toward constipation.
- The job, day to day, is to keep those two forces roughly in balance. Too much in either direction and the whole week gets derailed.

This is not the kind of thing I ever pictured talking about in a public space. But if you are here to learn along with me, this is the actual texture of life on aggressive chemo, and pretending otherwise would not help anyone. So, here we are.

The face of cancer today

I really hesitated to share this picture. It is, very plainly, the face of cancer that I carry today. Blue head wrap, port still accessed in my chest with the line and clamp hanging out of my robe, a tired stare that I barely recognize as my own.

I have lost a tremendous amount of hair. I do not think I will be going out anywhere without a hat for a while, and eventually, when I find the courage, maybe a wig. Losing your hair strips you of more than you would expect. It is not vanity. It is the daily mirror reminding you that your body is in the middle of something hard, and it takes away a small layer of privacy about being sick. Strangers can tell now.

I am posting this anyway, because the whole point of this space is to be honest about what this actually looks like, not just the good days. If you are reading along, this is part of the picture too.

The cold sensitivity, and my cocktail shaker hack….

Another wild phenomenon of this regimen is that the cold sensitivity (a known side effect of oxaliplatin) gets more intense as the cycles add up. It is not just an "ooh that is chilly" feeling. It is a sharp, electric, pins-and-needles zap in my hands, lips, and throat the moment I touch anything cold, and it can take my breath away.

I already learned the hard way that I cannot just reach into the fridge without thinking. Yesterday I really wanted a sugar-free lemonade, and of course it came cold. My fix: a little plastic cocktail shaker. I pour in some warm water, add the cold lemonade, give it a swirl, and bring it to room temperature so I can actually drink it without my throat seizing up.

All the tiny things I used to take for granted (ice water, a cold can of anything, a popsicle, putting away groceries) now require a workaround. There is something humbling and almost funny about it. A cocktail shaker, no cocktail, just lemonade and survival. WTF is this life lol? 🍹