Chemo is weird and scary and it really helps to have a partner that you are open with to keep your head on straight. Ellie keeps me facing forward always.
Yesterday was easier than I feared, and it made me a little cocky at some points. Confidence is important but I also have to approach this with humility and realistic expectations. I hope to be able to maintain the thoughtful and observant approach I have been striving for as my health declines due to the way these drugs work. I have my eye on the goal of getting out the other side always, and I am doing my best to be patient (in all 5 adjective and both noun definitions of the word). I just have to temper myself a little bit when the worst-case does not immediately occur, because times are going to get bad and if I don’t stick to one day at a time, those bad times will hit me so much harder than they should otherwise.
I am super early in the very first cycle so a lot of the pre-load IV drugs are still in my system fighting off some of the side-effects of the gnarly chemo, and right now the primary side-effect I have is any temperature that’s cooler than about 80 degrees gives me an odd sensation of pins and needles scaling up to unbearable burning depending on the temperature and duration of exposure. Room temperature drinks are like swallowing an inside-out pin cushion. Accidentally washing my hands in cold water is like putting my hand in the box from Dune. A cold breeze makes my entire face feel like I was just at a major dental visit. The only other thing so far is whenever I eat anything my saliva glands cramp up, squirting roughly a gallon of their output into my mouth. Think the feeling you get sucking on a lemon, but multiplied to a point where it feels like a martial artist just put you in a pain submission hold. It doesn’t matter how bland or tasty the food is, that first bite has me grunting and holding the sides of my jaw until it passes.
There will be worse to come. I am hydrating like mad, and eating well (SO WELL THANK YOU TO PEOPLE THAT HAVE BROUGHT FOOD), and taking walks and getting exercise. I have so many calendar entries to remind me to do all these things on a regular basis. It will help me when the diarrhea/constipation/nausea/mouth sores etc etc etc come as they likely will. I am doing my best to prepare knowing I will probably never be ready enough.
That covers what I am feeling. Regular me with some oddities. Here’s how I am doing:
I only slept about 4 hours last night. No stress or anything, brain was just like “no thank you” to sleep. Side effect? Maybe. Reaction to major life event? Probably. Anyway I was calm and happy laying there all night except at one point where I rolled over funny and did something that felt like I accidentally tried to tear the stitches out of my port site. Nothing wrong with it, just got careless with my night time thrashing. Woke up for morning dose and made breakfast and got coffee ready for Ellie and tried really hard not to kiss her because I am exuding poison in all my body fluids now and need to protect her. Got my Daily Bird. Got paranoid about COVID. Took a little walk. Now I am working and waiting.
I will be waiting whenever I am not doing. I will be doing whenever I am not waiting. This is all it will be each day until the next day.
I have already received so much help and love from so many people and so many of you have asked what you can do and I will do my best to reach out whenever I can as our needs change. Right now I just feel like Matt, but tingly. In two weeks I might feel like a zombie and ask a lot more. You are all the very best and I am keeping track and you better believe when I get out the other end of this I am going to become SO OBNOXIOUS paying you all back.
Happy Wednesday!