Still here!

I don’t want to jinx anything but it appears that with judicious use of sparse frequent meals and timing of drugs I am transitioning from pendulum swinging back and forth between 3-9 on a 10 point nausea scale to a state of wonderment at what the hell has been done to my stomach lining? It’s been a long 5 days.

Right now I am emotionally in a good place. I have been writing letters, slowly, and doing small chores when I have energy, and taking short walks and staring at sunrises and sunsets and listening to birds and all the things you do when you have Big Things change. Or at least all the things I do. I shouldn’t speak for others.

I don’t feel fear or anger. I mostly feel very thankful for what I have, and curious about the future, and in general in a way that has been missing from my life for a long time. Sometimes it’s I wonder what it will be like to go in for my 6th cycle? Sometimes it’s magnets, how do they work?

When I am in a negative space emotionally it’s almost always frustration because I want to do something that is beyond my limits, or because mentally I am hitting some patches of brain fog that make me need to carry multiple notebooks around just to remember what I was doing. I repeat myself constantly. I lose track of things, including what I am saying while it’s coming out of my mouth. I can’t think of simple words and concepts sometimes. It would not be a good time for me to try out for Jeopardy. I guess it’s a good thing I got to experience that one bar trivia win a couple weeks ago. That dumb stoned-but-not-in-a-fun-way feeling is why the letters are so slow to go out. I have to focus and hold onto a pen and make things mildly legible, which is a struggle for me at top health, whatever that is. Might be time to bust out the typewriter again. But then it’s a noisy non-late-night thing. Balance. If you signed up for a penpal, I’ll get there, I promise.

Physically I am weakening, but as slowly as I can have any control over. I eat, I move, I sleep, I hydrate, I repeat on roughly 2 hour loops. That helps keep my numbers up where they can keep shooting drugs into me, and helps keep me able to take care of myself when I am struggling with side effects.

As I said, the nausea has lessened considerably since last night, but I have heartburn almost all the time now, because as the drugs kill fast-dividing cells, they have a tendency to hit the good along with the bad, so stomach cells get side-swiped. I used to joke I had the core strength of a newborn premie, but I am pretty sure that’s not a joke anymore. The cold sensitivity, neuropathy, mouth sores, other stuff have mostly been a dim cloud on the horizon rather than front and center this cycle, which is interesting. It’s almost like my body heard me repeating over and over that nausea is my least favorite thing in life, and served up the All I Don’t Want Buffet.

This is what my autumn will be like, if I do everything correctly. Just a long string of days-at-a-time until I get where I need to be to do the scary part with the cutting. I hope you are feeling wonderful and happy if you’re reading this. If you have any questions about stuff I haven’t covered, I think I am getting pretty decent at explaining my personal interaction with this dumb disease and am more than happy to answer.

Happy Tuesday!

Leave a Reply

Your email address will not be published. Required fields are marked *