Sorry for the 2 post meltdown and then radio silence. I lucked out this time and my doc found me a new trial to go on. I’m taking 2 oral drugs, Tamoxifen (again) and Vorinostat, and I get an infusion of an immunotherapy drug every 3 weeks.
So far, so good. I actually feel fairly normal on this drug and there are only minor side effects. My platelets are low so my legs look like I’ve been in some sort of crazy fight and there’s maybe a little fatigue, but it’s hard to tell with the number of hours I’ve been working recently.
The worst side effect from these drugs so far is my messed up taste buds or “Chemo Mouth” as some people call it. A few weeks ago I was having the problem that everything I ate tasted like metal and now everything tastes like salt. EVERYTHING! Sweet things are actually sort of worse than foods that should have salt in them. It’s to the point that I don’t even want to eat b/c everything tastes so nasty, but I know that I have to. Continue reading Chemo Mouth
Chronic illness is the thing that I struggle with the most in my current situation. It’s the thing that makes me feel alone and sad and tends to trigger most of my recent meltdowns. It’s also something no one will ever fully understand unless they have the misfortune of having it, so I thought I could try and explain it to you.
When I was first diagnosed with metastatic cancer, I felt lucky to have such an amazing support system of family and friends. It was really hard to process the idea of having incurable cancer. I was just about to turn 30 and the thought of being “that cancer girl” for the rest of my life horrified me. My friends made jokes with me and told me that I was stupid for thinking that no one would ever love me or want to be with me because I have cancer. They were a shoulder to cry on and would take me out drinking and dancing whenever I needed a break from reality. Continue reading The woes of chronic illness
I learned a new word while at chemo today: fiddly bits. My new favorite chemo nurse, Caroline, said it to me in passing and I can’t stop trying to use it in sentences. She wasn’t even my chemo nurse today, but I still talk to her because she cracks me up. It’s a really fun word, I’m going to try and make it part of my vocabulary. Continue reading Fiddly Bits and Tricks for AC-T Chemo