Time for an update on how treatment is going: I’m dealing with some side effects of Xeloda. My fatigue is still real. That blood didn’t do much for my energy–I’m no longer anemic, but still fatigued. We went out to the coast and I was too tired to go for a walk with the family. I walked up the stairs of our beach house to get my coat, came back downstairs, and was like “Nope, that was all the energy I had.” I didn’t even get to see the beach while we were there, because I literally didn’t have the energy. Sigh.

Fatigue sucks, but it’s not my only side effect of Xeloda. I’ve also developed what is known as Hand-Foot Syndrome. Hand-Foot isn’t talked about much outside of cancer land, so a lot of folks who don’t have cancer aren’t familiar with it, so let me explain how it works. You take Xeloda, and after you’ve been on it a bit, you start developing changes in the skin on the palms of your hand and the soles of your feet. At first, I got weird brown spots on the palms of my hands, like really big freckles, and then the skin started to get really dry.

Then, when I went to Disneyland in January, I wore sensible shoes the whole time but still developed enormous blisters. They healed, but now the skin around my nails on my fingers and all along the bottom of my feet have become really peely. Like, every time I take a shower, my skin starts to slough off as soon as I get out of the shower. It’s alarmingly gross, like, seriously just disgusting amounts of dead skin just falling off.

And then a couple weekends back I started to get some neuropathy in both my hands and my feet. Neuropathy is like a numbing/pins and needs feeling, like your hands or feet fell asleep. Add that to the truly debilitating fatigue I’ve been having (it’s really hard to be an effective parent when you can’t get out of bed) and it was clear my Hand-Foot was getting worse.

#bestdocever had warned me of all this when I started on Xeloda, and recommended I use a cream with urea on my hands and feet, because there have been studies showing urea helps with the dry and peeling skin. So The Hubs bought me some Udderly Smooth (the container looks like a cow, and we call it “Mom’s Cow Lotion”), which I was using obsessively, and yet, the peeling continued. So I asked some friends who’ve been on Xeloda about what they used, and they recommended a cream called Revitaderm. It’s a whopping 40% urea. 

I put it on my hands and the dry dead skin started just sloughing off, like, immediately, like, the act of rubbing the lotion into my skin resulted in all this dead skin peeling off. Same with my feet. The skin underneath seems healthier and less peely, but holy hell, it’s really disgusting watching all that dead skin fall off. I keep joking about having leprosy. 

But the cream doesn’t help with the neuropathy, so I met with #bestdocever last week and we decided I should take an extra week off Xeloda (I am on a 2 weeks on, 1 week off schedule) and drop my dose. I had started on 8 pills a day, dropped to 7 in February, so now we’ll drop me to 6. That’s still a shitload of Xeloda, so I’m expecting my fatigue to continue, but I’m hopeful that the Hand-Foot will subside a bit. On this extra week off, the neuropathy has subsided, so that’s something. If it got worse and I couldn’t type, I’d lose my mind.

The thing with having terminal cancer is that nobody in their right mind would take a drug that keeps them in bed all day and makes their skin fall off–except that we know the alternative is, we die. This is why the experience of metastatic patients is so different than the experience of early stage patients. I don’t mean to minimize the experience of early stage patients because all cancer treatment is shitty and it leaves lifelong impacts, both physical and emotional. But for early stage patients, treatment ends. For us, treatment only ends when we die–and so we put up with pretty awful treatments, because the alternative is death. Xeloda is one of the gentlest chemotherapy available, and my side effects from here on out will only get worse. 

This is why I’m so passionate about research. I don’t want to live like this. I want to have energy, and I want my skin not to fall off, and I want my metster friends to not have diarrhea and need adult diapers. The only way to improve the quality of life of metastatic patients, and the only way for us to turn our disease from terminal to chronic, is to research new treatments for metastatic cancers. I know that scientists can help us live better, if only we’ll support their work.