I’ve had a lot of people ask me what I’m up to, and sometimes this is kind of a hard question to answer. I’m not back to work yet since my chemo has still been so unpredictable. So, when I go to answer this question a lot of the time my natural response– in the context of not working or doing my old “normal” routine– is something like, “sitting around doing nothing!” Or, I’ll feel defensive for some reason and say something like “I’m doing LOTS. SO MUCH…” and then vaguely reference what I fill my time with… “Kids… the kids. Also I get groceries. And, then, you know– I cook them….” Neither of these responses is correct, but I can’t seem to figure out a better way to answer this question on the fly.
So normally I’ll get up around 6 or so, get a couple cups of coffee in my system and spend time with the kids before school. Sometimes this time is lovely- relaxing and snuggly before the day starts… Or it’s more task-master trying-not-to-be-late time– reminding the kids 10 times to brush their teeth, and put their plate away type of stuff. I’m trying to enjoy both kinds of mornings, but… some are better than others.
After the kids are off to school Ive got a few ongoing things I’ve been doing. Each day is different depending on what else I have scheduled. I’m doing Physical Therapy twice a week for an hour at a time, I get labs about once a week. Last week I saw my PCP — got my flu-shot, and had my skin check at the Dermatologist– regular maintenance health stuff that has to be done. I also try to see friends once or twice a week, for a meal or a walk or something. And then the usual house stuff– laundry, dishes etc…
In between these things this is what I do:
-I’m of course doing my OligoACTION items. So far 20K raised through Consano!!! I’m floored and continuing to learn how to best advertise this and get the word out about my plan to conquer Oligodendroglioma. I’m even going to be on the News! More to come on that later 😉
-As part of my OligoACTION, and trying to raise awareness, I’m trying to be more active in social media and have been upping my twitter game. Recently I’ve learned that it is called “tweeting” and not “twittering” — so I’m making progress! If you’re on Twitter, you can follow me @busy_butler. I also have re-activated my IG betweenthebusy account– I had initially used this to document my recovery from breaking my leg a few years ago, and now it’s kind of linked to this blog. I hope to continue to do that better over time. (I’ll happily take tips on how to do these things better if you have them! I’m totally winging it with my fingers crossed most of the time).
– Writing. I have a few blog posts in various stages, but have been slower to upload. I also am thinking about other writing formats, but haven’t done much with that yet– anywhere from screenplay to infographics related to cancer… trying to cultivate the creativity that I haven’t used in years but used to enjoy in college.
-I look at knitting stuff… I am finishing one project and thinking of what I want to start next. I’ve taken a few books from the library and am trying to get “fancy” which is frequently backfiring. But I’m getting better! I’ll post about my newest stuff soon.
-I have been cooking more and trying new recipes. It’s fun to have time to mess around a bit in the kitchen. I’ll write more in depth about the ketogenic diet at some point, but a major pillar of this diet is to eat a lot of fat. I need about 177 grams of fat a DAY. That’s a ton. So I make these “fat bombs” that have mostly butter and cream cheese and turn them into something that tastes remotely like ice cream or cheese cake. These are my recent favorite– “cookie dough.” I also, though, am making fun things for the rest of the family– this week I made this apple-honey bread pudding to celebrate Rosh Hashannah with some friends. I didn’t eat any, but it smelled good! And then, this plum torte! Also super good, so I’m told
-Keeping up with exercising more or less. I’m not as consistent as I used to be, but it’s taken me a while to get my energy back after each chemo session. Next week will be a very active week for me– I’ll be doing my 300th Peloton Bike ride IN THE STUDIO! I can’t wait. I’ll share about this once I have photographic evidence 🙂
-I’m hooked into the TV show The Americans right now– I’m in the last season and so will watch a few episodes a week. I don’t like it as much as my last series obsession, Bosch, but it’s not bad.
-Reading with the boys. We recently finished Mr. Poppers Penguins, and I’m currently on the hunt for a new chapter book to read with them at nights. Let me know if you have suggestions. We’ve read the first Harry Potter, but I think this is a bit advanced for our 4 year old. In the past we’ve read Magic Treehouse books and lots of the Roald Dahl books. I’m looking for something similar to these, that preferably is not a comic book.
-And finally… at the behest of my husband I’ve started to play the Untitled Goose Game on the Nintendo Switch… and it is super fun. AND good OT.
I mean– this fills a day pretty well. I still feel like I don’t have enough time to get to all the things I want to do! I guess that will never change– I’ll forever be busy! 🙂
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