I had another moment with my body having issues it hasn’t told me about. It was uncomfortable, unsettling, embarrassing and frustrating. I have been sitting with the feelings for a bit now. I have been working on how to see the feelings, how to feel them and then how to let them go. Those feelings do not serve me anymore. At one point they must have been put in place to protect me but I am safe and no longer need them. I thank you but you can go now.
Rinse and repeat. On so many levels.
It is true that chemo is accumulative.
Accumulative malaise – the word I have chosen for that feeling, malaise. To be honest I have been using that word only moderately sure of its meaning but it just sounded right. Malaise, just saying it with a long drawn out drawl – it sounds malaise-ish. I actually googled it just now to find the true definition so I didn’t sound like an idiot if I wrote about it here. And I may not have been super sure of its meaning I knew how to spell it = winning! It’s the small things right now that impress me.
The accumulation of chemo is like I am on a long slow walk with a buddy whom I am very appreciative to have them along for the hike, but over time little annoying habits and traits start to show. Not anything earth shattering but just enough to be annoying and distracting, leaving an unsettled feeling in my belly through some of my days. I can think of very few people I would go on a six month hike with. Chemo and I are going for the long haul. I picture my one week off drugs every round as a time that I hop off the trail for a minute and catch my breath.
The chemo feeling is not as pronounced as I thought it would be, it’s kind of sneaky. The side effects of my hiking buddy, Chemo, have been varied as I have been sharing. A new one is just a weird feeling in my mouth all the time and the raw feeling on my palms and bottoms of my feet. Also the feeling of malaise is sticking around a bit longer and sometimes even hard to pinpoint that that is what I am feeling. Mornings are my feeling a little punky time of day. Am I just tired or is it something I ate… no just chemo. Also, I have always associated loss of hair with chemotherapy, that will most likely not happen to me. My hair is thinner and hardly grows but it’s still on my head. My neuropathy is probably my biggest focus. The weather changing will be an interesting mindfulness and preparedness practice. It is a cat and mouse game with the warm and cold. If I bundle up too much I get too warm but if I don’t bundle up enough I can get the tingles. Yesterday it was on again off again of socks and gloves with the cold morning, warm afternoon and chilled evening. I walk around with gloves and wrist warmers when it is 80 degrees out. I am getting used to feeling like “that lady” walking around town.
Chemo brain is also real. My family is having a field day laughing with me and the weird stuff I say sometimes. I am used to having a pretty quick (sometimes like a chipmunk on speed) mind so to be kind of foggy and slow is interesting. I kind of feel like I am at normal speed of human though process but with some swiss cheese holes thrown in. I am staying on top of things though in my work world and family (I think, I should ask Jenn and the kids about that second one). Other than forgetting things and being slow to process information at times, I also occasionally say weird stuff. For example the other day Jenn was on the phone with a friend of ours just catching up. At one point Jenn says “You can lead a horse to water but you can’t make him drink” and for some reason in that moment from the other room I say “You can stick you fist up a horses ass but you can’t make him fart”. Why did I say this? I don’t know. I thought it was clever and worth sharing, who knows. I found it especially humorous since my personal farting abilities have been stunted due to my ostomy bag. Either way I thought it was funny, maybe not appropriate at the time (or now) but maybe it is chemo brain or maybe I am just taking liberties with the cancer/chemo card. Who knows if it is just a reduction in my “Give-A-Shit-O-Meter” of life? I am different from who I was before all of this. It will be interesting to see how I carry that forward after chemo and my reversal surgery. Good or strange, growth and change are happening.
Chemo brain + accumulative malaise = the universe forced slowing down. And I don’t really mind it so much. One of the better things to come out of this journey is a prolonged practice of slowing down. About ten months of slowing down once it is all said and done if all goes well. We have been working on sitting and just being. Being present with the kids and each other. It is not easy with how fast the world moves, it is a focus that is hard to hold. Luckily for me my body whips me back on my butt if I try to plow through or do too much, and I have tried. Again my body is wiser than I am.
I am very proud of how well Jenn and the kids have taken on this journey with me. I know they do not have a choice really but I am very thankful of all the efforts all of them have been putting in. It is a lot for all of them to take on also.
Overall we are all doing really well. Ella had her first homecoming dance. Sam is looking at colleges. We were able to get away for the weekend which I was so thankful for after having to miss my family vacation in Port Huron (the kids were able to go though!), canceling our family vacation with the kids in Ohiopyle, PA, and having to cancel our wedding reception party. Having to cancel all of that was a super bummer this summer. I was happy to see the colors up north this weekend although it was cold and rainy. Work is busy for Jenn right now and she is juggling it all with amazing grace. I have a busy work month of taking and giving trainings and working the Michigan Prison Doula Initiative to get ready for program implementation and fundraising. So many amazing and wonderful things going on. I am so very thankful for all of it.
To quote Bruno Mars “hashtag blessed”.