I was supposed to receive my 11th round of chemo on Wednesday, 1/27. In a SNAFU in which my oncologist, patient coordinator and oncology pharmacists all do not want to take responsibility for, I did not in fact have my infusion that day. Somewhere along the information flow, a new medication, Panitumumab, which was to replace the Cetuximab (that had caused my anaphylactic response last infusion) was not ordered and ready for me. After considering the options available, we chose to put off my infusions a week so that I could receive my complete set of infusions at the same time and on the same schedule. And so my infusion was rescheduled for Thursday 2/4.
One of the things that came about from all this wound up being a little upsetting for me. If you’ve followed my blog, you know that CEA(cancer protein) levels can be and are used to monitor cancer growth. I had my labs drawn for the previously scheduled chemo on 1/25, my CEA was at 37.6. When I had my labs redrawn for the new infusion date on 2/3, my CEA had climbed to 65.2. So my cancer grew in the week that we’d put off the infusion. This colon cancer is an aggressive fucker and makes it hard for me to have any confidence of in an extended period of time where I could possibly be off treatment and stable.
So here I am today. A little over a week since my last infusion and suffering from shitty side effects of the Panitumumab, which attacks your skin. My mouth has a bunch of painful sores on my gums, the inside of my cheeks and on my tongue – which is limiting me to liquids, soft foods and no spices. If you think about what your cheek feels like if you accidentally bite it and it leaves a little open sore, that’s sort of where I am but amplified. My face, the top of my head and my chest are all covered in acne/rash that is itchy, dry and painful. There’s an antibiotic I was prescribed to help with that, but the negative effects it caused on my gastro tract outweighed anything that could have been gained on the skin front, so I discontinued that pretty quickly.
I’m still fighting with all that I’ve got. I’m not confident that I’ll ever have much more time I spend either not in pain from the treatments I’m receiving or from the cancer growing. My sleep cycle is fucked up. I’m emotionally raw. I cry often and unprovoked. I’m also still thankful, even if not fully hopeful. I still have great family, friends and overall support. I recently received my first dose of the Covid vaccine. I’ve begun to book trips for after I’m fully vaccinated, which is definitely giving me something to look forward to. I know that I have a lot to live and fight for, no matter how long or short that period of time proves to be.
With continuing thanks and gratitude,