My year, it is not off to a good start. But I don’t think there’s anything to be gained from secrecy, and possibly some good to be done by talking in public about it. So here goes: the tale of my last three weeks.
Last fall, mid-November, I went in for a physical. Everything was great, bloodwork and all; I’m a healthy and active creature. I complained about some mild constipation. My doc suggested a few things, and to come back in a month or so if they didn’t help.
I went back in on January 2, no worse but no better. She didn’t think anything serious was wrong, but when I pushed she readily agreed to send me for an ultrasound.
They got me in almost immediately, the next Monday morning. The images showed a mass on my liver, so they got me an MRI slot the next day. The doctors spent a long time looking at the two sets of images and muttering to themselves, to no avail. I saw a GI specialist on Wednesday, and he admitted to being stumped, but he managed to get the expert panel at the regional hospital to look at them at their meeting that afternoon (my medical group, Geisinger, has a core-satellite system, and the main facility is in Danville, about 80 miles east of here).
The verdict was, “We don’t know, but it’s probably benign. But you need a biopsy anyway, to confirm.” That was set for Friday (yes, all in the same week). More bloodwork, showing that my liver function was just fine. So, not too worried at this point. I was told that it would probably need to be removed anyway, which didn’t sound like fun, but was manageable.
My wonderful friend Toni drove us to Danville for the biopsy, in the snow, at a ridiculous time of the morning. It was rather interesting; I did it without sedation* (anecdote below, so the squeamish can skip it).
There’s a risk of bleeding, so the owner of a biopsied liver has to spend a couple days doing nothing. I watched a lot of Doctor Who and napped. Because, you know, this was just confirmatory of the Wurst’s benign status. (Yes, of COURSE I named it.)
Monday, the phone call. Malignant. Still working on the detailed pathology, but that was the key bit of information.
This triggered a whole new round of scheduling goodies, starting with a jaunt back to Danville on Tuesday morning to talk to a liver surgeon, and the likelihood of liver surgery almost immediately, on Friday morning. I frantically cancelled all of my work meetings, told everyone I might be unavailable for an extended period, and pulled back from a bunch of obligations. The various experts also decided I ought to have a colonoscopy on Wednesday, which meant I had to drive to Danville and meet with the surgeon while not eating and drinking a lot of Gatorade. I cheated: one piece of toast for breakfast to reduce the chance of dying on the road.
We discussed the various surgery options, but once the biopsy results were fully analyzed it was apparent that the liver was a metastasis from a primary colon tumor, and my bloodwork confirmed it (high CEA levels, a marker for colon cancer).
Believe it or not, this was good news: even advanced colon cancer is a whole lot easier to deal with than liver cancer, a whole lot.
The experts decided they needed more data (generally a good plan), and set me up for a full-contrast CT scan on Thursday. You may recall in this whirlwind of tests that I had a colonoscopy on Wednesday, and had been fasting and doing prep on Tuesday. This means that I got to entirely clean out my guts, get imaged, have one meal, then immediately start fasting and drinking barium goop. I don’t recommend this plan particularly.
I was also starting to look like a drug user from all the blood draws and IVs, and I still had surgical adhesive all over my belly. But except for the effects of the tests, I felt (and feel) fine, except for the minor digestive problems.
Anyway, the colonoscopy confirmed that yes, I have colon cancer. Not that we really needed the pictures to know that, but they wanted to know what and where and how much.
The CT scan, ditto. Nothing new there. Just when I thought they had run out of tests, they assigned me a PET scan too. That one involves a very low carb diet for a day, fasting the day of the test, then an IV of radioactive glucose. There’s a resting period where you can’t do anything, so the cancer cells will be the most active metabolically and pick up the glucose, thus showing up on the image. I listened to Seanan McGuire’s music during the resting period, figuring it would increase my chance of developing superpowers. That didn’t show anything new either.
The morning of the PET scan (Wednesday) I had a meeting with an oncologist here in State College. While Danville is the location of anything major, most treatments can be handled here in town, including chemotherapy. I don’t need to travel for anything other than surgery and more detailed consults.
Which I had one of on Thursday at 8am. I met with the whole array of experts: colon surgeon, another oncologist, a radiation oncologist, a nutritionist, a psychologist, a nurse whose job it is to help people navigate the medical treatment system. I can’t say enough good things about everyone I’ve dealt with so far in the Geisinger system: they have all been professional, thorough, willing to answer questions and listen to what I had to say, very efficient (note that all of this took place in under three weeks, including tests and multiple specialists). It doesn’t hurt that I’m a scientist, rather assertive, and have read all of the imaging and biopsy reports (even the one I had to take from my oncologist, saying “I haven’t seen this yet.”)
Anyway, the upshot of all of this is that I’m getting a port installed on Tuesday and will be starting chemo immediately thereafter (I don’t know yet if this means Tuesday or what).
I have procured a fuzzy purple bathrobe and a new recliner (also to be delivered on Tuesday), for proper resting and recovery. The chemo is a two-week cycle: 46 hours with drugs dripping in my port, then the rest of the two weeks to recover from it.
And I still feel fine. I’m both very healthy and very sick; it’s rather odd. I expect next week’s chemo will change the “feeling fine” part, although the internet reports a wide range of side effect intensity for this regiment (FOLFOX).
If I have to do this, which it seems I do, I’m at a very good starting point. As I’ve already said, I’m healthy to begin with. I have a lot of support from work (including a bank of nearly 1100 hours of paid sick time and blanket permission to telework as needed or able), good friends, excellent doctors, good medical insurance.
I still don’t want to, but this is all science. And I’m fucking good at science. The motto around here is “Beating cancer with science and snark.”
squeamish people stop reading here, okay?
Ready? Okay then.
Liver biopsy: fascinating. I wanted to watch, so didn’t ask for sedation (which was ready to hand). They stuck me in a CT scanner, figured out where to probe, inserted the cannula, back into the CT to check it, and so on. The radiologist asked frequently if I was okay (sedation ready to hand), just in case.
I wasn’t allowed to move, especially not once they had a tube stuck through my side into my liver. I wiggled my head just a bit, and rolled my eyes a lot so I could see what they were doing, which led to the following exchange:
Dr: Are you sure you’re okay?
Me: I’m fine, I’m just trying to see my liver.
Dr: laughs Okay, we’ll make sure to show you the samples we collect.
And he did: I am now one of the very small set of people who can claim to have seen their own liver and survived. This pleases me.
The nurse tells me that most people aren’t nearly so interested in observing their own actual innards. Silly them.