On the road again!

Well, on the plane again, actually.

Hi, everyone.

Life has been heavy lately, and I have found myself shying away from Substack. I’ve been sleeping a lot, about 11 to 12 hours a night, so my days have been short. I am struggling with the give and take that Substack requires emotionally. What I mean by that is that the way I had been approaching Substack to date was to read and follow quite a few people and respond to every single comment I received on my posts and my articles, at the bare minimum with a like but preferably with a written response. It sounds simple enough, but it took a large investment of time and energy. When my day-to-day life upped the ante in the emotional energy required department while decreasing my daily energy allotment, I began to let Substack slide.

I’m not apologizing for any of this. Substack is a tool to be used when it is helpful for all involved. I began writing here as an outlet, writing into the void with no followers, and as my following grew, I promised myself that I would continue to use it as an outlet to benefit my mental health and not become entrapped by it. Once it became a chore, I needed to take a step back, which is exactly what I did, although not consciously at first. This evening, however, I feel like writing, so I thought I would type out an update.

I will be boarding a plane tomorrow to head into Portland for a last-minute brain MRI. As I mentioned, I have been sleeping a ridiculous amount, and I don’t wake up feeling rested, even after a solid 11 or more hours of sleep. I have had a migraine nearly every day, and have been really dizzy most days. I have collapsed a couple of times, my legs simply giving away beneath me. A few days ago, while sitting on my bed watching TV, I realized that I couldn’t move from the waist down. Once my son manually lifted my leg off the bed, I was able to walk again. I had symptoms similar to these years ago, minus the dizziness, and they were due to my migraines. They are suddenly reappearing after being pretty much absent for the last five years. We are hoping that they are due to migraines again this time, but we do need to rule out the possibility of brain metastases from my breast cancer. In order to do that, my oncologist ordered a stat MRI, which I will be having Tuesday afternoon.

Photo by Ross Parmly on Unsplash

How do I feel about all of this? Tired, mostly. I’m exhausted, and having to travel isn’t going to help with that. However, I am the one choosing to get my care 140 miles from home, and having to travel is part of that choice. I do wish we had better local care so I could sleep in my own bed at night and didn’t have to spend the night in a hotel to be able to get one simple scan, but it is what it is, and I am thankful that I have access to good healthcare.

As for how I feel about the possibility of my cancer having gone to my brain, I feel divided. Rationally, I know that my symptoms are likely due to migraines, but I was surprised when my oncologist took my symptoms seriously and wanted to rule out brain metastases because I was under the impression that my type of breast cancer (hormone receptor positive, HER 2 low) hardly ever metastasized to the brain. When she told me that she wanted to do an MRI, I decided to look up the statistics and found that the odds of brain metastases in HR+, HER2- breast cancer is close to 15%, not the 2% that I somehow thought it was. I couldn’t find any information on HR+, HER2 low, but HER2+ cancers have a higher likelihood of brain mets than HER2- do, so I doubt my HER2 +1 does me any favors in terms of odds. I was shocked to read those percentages. Rationally, I know that I will get the MRI and it will likely only show signs of chronic migraines. The fear though … the fear is real, and presents itself as a sick feeling in the pit of my stomach, a tense jaw, and tight shoulders.

I haven’t allowed myself to go down the “what if” trail, with two exceptions. The moment I found out that I might have brain mets, I determined that I would use Death with Dignity, legal here in Oregon. I don’t want my personality to change. Not now, and not ever, so if I am told that this will likely happen to me, I will go the route of medical aid in dying. I also decided that I will have as much sugar as my little heart desires if I am diagnosed with brain mets because my life expectancy will likely be very short, so extra pounds will no longer matter. Bring on the molton-lava cake, the ice cream sundaes, the s’mores, and mounds of candy! I have a strong sweet tooth, and reigning it in is a daily struggle. Not having to curb it would be a nice silver lining!

Photo by Rimsha Noor on Unsplash

Other than those two realizations, I have not gone down the what-if path. Living with a terminal illness is a constant roller coaster. I don’t want to make the drops lower and more frequent than they need to be by catastrophizing before I absolutely need to. There are plenty of them, and they are sufficiently steep as it is.

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