Radiate Positivity

Radiation effects

So, health update which now seem (thankfully) like a footnote in my posts: my quarterly MRI was all good - no signs of progression. Nothing to do until my next MRI likely in July. The only ongoing issue is managing my energy to try to control/minimize seizure activity.

To that end, I had a great discussion with my Neuro oncologist, Dr. Sumrall, last week about whether or not she thought that I would ever be seizure free. As an aside, she is so wonderful, I should have taken the time to find an oncologist* that I liked a year ago, I have learned more from her in 3 months than I did in 3 years with my former one. She told me that she feels that many oncologists don't really talk about the long term side effects of radiation, or it's discussed early on when we are just overwhelmed in general. But, she said, to put it simply, the brain is really bad at cleaning up after itself, and radiation causes a lot of collateral damage in the brain and it just stays there and for most of us results in fatigue and in my case seizures and fatigue. In fact, one of my brain buddies shared that she's started taking Ritalin on work days to help her with fatigue. No shade to that approach but I'm already so heavily medicated. I'll stick to meditation and naps. I guess it's nice to know that some of my memory and fatigue issues are not just a me issue. There's a reason. So, if we are talking, and I'm yawning - it's not you, it's me - I promise.

And, I can't tell you how validating it feels to speak to others who are navigating survivorship. I had my first interview/conversation for my survivorship project last night and she was talking about still dealing with brain fog. And, it's not something that I want anyone else to be dealing with, but because it's so difficult to pinpoint in oneself, it's comforting to know that it is still a legit side effect of what you've been through. It's so difficult to remember how you felt in your "before" life.

*Finding the right physician. This is something that I didn't even think about when I was first diagnosed, and I'm not sure most are able at that point. You really are just on a bit of a medical conveyor belt and being so reactive, that taking the time to be proactive would be tough. But what I have realized is that, as the patient, you are the client. For that reason, I want to spend time with my doctor and feel empowered to ask questions, see them more than I see their PA, feel seen and heard. It's not a lot, but you should have a minimum acceptable traits from the physicians on my team. And if you've been in this sort of medical situation before, you know it is a full TEAM of doctors.

Chemo Curls

I really hoped that my hair would straighten back out as it got longer but it's just as curly as it was when it started growing back in. Yesterday was humid in NC, so I embraced it went full chemo curl (which to me, kind of resembles a 90's perm). My Grandma Culver, who thought all girls were prettier with some curl in her hair, would have been so pleased. However, I really struggle with what to do with 2nd day curls - any advice from the curly haired girls? I don't like to wash my hair every day. So, when they have been slept on and look a little ragged - what's a girl to do?

Busyness Culture

Brad and I often try to pull ourselves back from busyness culture, though it's really tough in today's American culture. I'm sure many of you can relate. How often do you respond with "busy" when people ask how things are going? It's a common refrain for all of us, and in today's culture, it's also a badge of honor. But it's really tough to shake, even when attempting it. Last weekend, Brad and I had a totally free weekend day. We didn't have any social plans, the house was pretty clean and we had done the laundry earlier in the week. We were trying to figure out our plan for the day, and even though we had both had busy weeks. I said "maybe we can walk to the coffee shop and do some work." And then it hit us, we don't HAVE to do anything. So, we didn't. And it was wonderful.

The Cambridge Dictionary illustrates part of the issue, as they define the word busy as, "If you are busy, you are working hard, or giving your attention to a particular thing." In my opinion, you can work hard without always being "busy."

I think it's also part of the struggle to stay in-the-moment and present. I have a bad habit of rushing from one thing to the next. This past week, I was jumping up from Sabor on Tuesday night after we finished our tacos to walk home. Why am I in such a rush?

Book Recommendation:

Anxious People - a great book about 8 strangers who find themselves in a common experience, each from disparate life circumstances (my favorite kind of novel), but the author includes so many insightful asides about the human experience, which are really beautiful. 10/10 recommend.

Brad says I'm churning through books right now, but it's just because my last few books have been fun fiction. I think I'm going to start reading a non-fiction book along with the fiction so that I can reward myself with some fiction. I didn't set a book goal for the year but I've just started my 6th and hope to get through 20 this year. In which case, I need to step it up. I way oversold my ability last year because I based it on how much I was reading during covid. I do think that having a goal keeps me from being lazy about it. There are just so many great books to read out there, I don't want to miss out!

Next MRI - mid-July