I was supposed to get my last chemo today, but I told them no. I had my blood drawn, like a good little cancer patient, and waited for my meeting with my oncologist, to which he didn’t show. Whatever. The conversation with his PA went like this:
Me: I’m thinking of foregoing the last round of chemo.
Kristi: Well, it looks like today would be the last of three. If the side effects are too bad right now, we can lower the next dose, or delay it a week.
Me: Hm. Let me be clearer. I have been thinking about it, and have finished thinking about it, and have DECIDED not to have any more chemo.
Kristi: …. Ok.
There is reasoning. First, I was already off-script because I was beyond the magical, mysterious 84 days from tumor removal. Second, this chondrosarcoma is so rare, there is simply no information about which chemo might have any effect whatsoever. Doxil was chosen nigh at random because it was supposedly better tolerated than the stuff they first put me on that almost killed me. Third, while the first round of Doxil had 0 side effects, I fell apart rather spectacularly in the second round.
I have a list of about 11 things that are wrong with me right now, but the most outrageous is that the skin in my underarms has started to fall off. And when I say underarm, I mean the skin from my elbow to halfway down my chest. See, they tell you to be careful with your hands and feet. No heat (I’ve had 6 weeks of tepid baths and testing temperatures with my elbows). No friction (I’ve been wearing two pairs of socks, really loose shoes, and walking really slowly). But what they don’t tell you is that you can get hand/foot syndrome that much closer to the body. Because it’s crazy rare. They didn’t even bother putting it in the pamphlet under ‘rare’ symptoms because it’s rarer than those. Because of course. I emailed a picture of what was happening to my pits to the oncologist and they threw up their hands and told me to OMG see a dermatologist right away. They didn’t even know what was going on.
The only dermatologist who could see me in less than 2-6 weeks was in Beverly Hills, so I spent 3 hours driving around so he could tell me it was toxic erythema of chemotherapy. He stuck little tags on me and took pictures it was that interesting. Then he gave me a prescription for lots and lots of steroid cream and admonished me again not to allow any friction to any part of me (no walking, no harsh soaps, no WASHCLOTHS), and no heat exposure, in fact I should exchange those tepid baths for very brief tepid showers.
Luckily we have excellent neighbors who were able to pick Sarah up for her last few days of school (thanks Scott), so I didn’t have to worry about that.
Oh right. And for my next round of chemo, I should try putting ice packs under my arms to prevent the Doxil from migrating there and making the condition worse.
You’ll just have to picture the raised eyebrow with your mind’s eye..
I won’t terrorize you with the picture I sent to my oncologist, but my underarms look and feel like someone applied a hot iron. Several hot irons. In rows.
The dermatologist thought this was probably the worst it was going to get, since the last chemo was three weeks ago, and I have my handy steroid cream now, BUT, you know, if it continues to spread, which it shouldn’t, but, in rare cases it could get really, really… Well. Just keep an eye on it and keep him updated. And that mottled red line on my left arm connecting my elbow to my wrist, that is probably nothing.
He never did spit out exactly what truly horrific thing this could turn into in the rare of already rare cases. Let’s hope it’s moot. I don’t really need to spend all my time as a case study.
Not as much of a non sequitur as it seems, we’ve been watching Neil Gaiman’s American Gods. It started out gratuitously gory, but we stuck with it through a couple of episodes and are liking it. So, spoiler alert, there’s a scene where the protagonist’s wife comes back from the dead. She injures her arm, and it falls off. She tries to sew it back on, but it’s not until some kindly undertakers fashion a metal rod to attach her humerus to the rest of her torso that it really takes. And I’m thinking, okay, what do they think that metal rod is anchoring into when they just jam it in there like that? That would never work, but look at her stitches, they’re just like mine. And there’s a scene later when she takes a hot bath so she’ll have a warm body temperature and feel alive to the touch, and some jerk reminds her that she is in fact still dead, and that hot bath will just make her rot that much faster. And then I think, I’m pretty sure this isn’t what people mean when they talk about representation in media, but I feel ya dead wife.
I feel ya.
Anyhow. I’m done with chemo. And if my last chemo was May 11, then by July 11, I will again be as normal a human as can be expected, free to take hot baths and leisurely walks any time I want. It’s a Tuesday. Look forward to it.