Realistic Stability

I’m not at all sure how we’ve gotten to November 20th. I’ve been meaning to write this post for awhile now, but things kept getting in the way. Sometimes fun activities, sometimes exhaustion, sometimes my brain just feeling fuzzy and unable to string two coherent sentences together.

So, I’ll make this short and sweet. As of my latest scan (end of October), my sarcomas are pretty much stable, one of my blood clots is gone, and the clot in my lungs is neither growing nor blocking anything important! This is a good result and the best that could have realistically been expected.

The downside of being an optimist? You don’t always have realistic expectations. I understood that my treatment is meant to stabilize my sarcomas, not shrink them, and I knew that my blood thinner is meant to keep my clots from getting bigger, not eliminate them. However, hearing the news that Friday didn’t result in the giddy glee it ought to have.

Instead, I felt hollow. It wasn’t bad news, but it wasn’t the news I’d wanted. Then, of course, I felt horribly guilty and spoiled for wanting more than I’d gotten. It was like being 9 years old and disappointed that my parents hadn’t changed their minds and gotten me a live pony for Christmas. That disappointment was always quickly followed by guilt because I had one of the best collections of model horses, in addition to weekly riding lessons at Rocky River Riding where I got to ride lots of different ponies and horses.

Bay pony with a young Bethany
Just one of the ponies I was lucky enough to compete with in horse shows

In retrospect, this was a far better deal than if I’d been given an actual pony. Of course, when I told my sister this (over a week later because I suck with expressing my guilt), she was brilliant in the best big sister way. Laura simply replied, “Wishing for a pony is legit. Especially when a pony is ‘having less cancer.'”

As I said, it’s the downside of being an optimist. I believe so strongly that a literal miracle will happen that it’s hard to remember to celebrate when I get normal, realistic good news. My next scan is at the end of December, a few days after Christmas. Hopefully this time if/when I get good-but-not-miraculous news, I’ll rejoice instead of feeling hollow that I didn’t get my pony.

There are enough other difficulties that I need to remember to celebrate the wins however they come. I’m coping with a newly-diagnosed asthmatic cat (inhalers for kitties are not cheap and my cat is not easy to medicate, just saying), the holidays that bring up my grief as though it’s new and fresh, and general other life stuff because life doesn’t stop just because you’re dealing with a big and awful thing.

Courage and Confidence Aren’t Constant, and That’s Okay

Facebook memories are full of good, bad, and neutral images and posts from the past decade or so that I’ve been on that social media platform. Sometimes they stop me in my tracks, other times they help me move on. The first memory to pop up in today’s memories falls solidly in the second category.

Facebook status about how cat poop might help fight ovarian cancer. My post reads: Admittedly, I didn't have ovarian cancer, but part of me smiled at the idea that a parasite from cats might be the key to one cure for cancer.

Seeing this memory pop up in my FB feed made me smile and gave me hope after a night of horrible sleep, bad dreams, and worst-case-scenario worries.

People tell me that I have a great attitude about all of this (pulmonary embolism, stage iv sarcomas, etc), which is true, sort of. People tell me that I display courage and confidence, grace and humor — but that’s just what gets shown most often to the public.

I don’t always have a positive attitude, tons of confidence, courage for the upcoming twists in the road, and a good sense of humor. I think I do have grace though, even if not in the way that we often think of one acting gracefully.

I have grace in that I’m blessed with a husband who responds to my 6 a.m. panicked searching for ativan by waking up and finding it for me, along with the other meds that help my brain calm down. That he does this despite getting very little sleep himself due to waking up throughout the night both when I woke up or whenever my breathing sounded odd, makes him even more of a hero. That same husband then made me breakfast with delicious coffee made with beans from our favorite coffee shop (Kefa Cafe) that reminds me of the great world outside our apartment full of our community that supports us in love. I also received a text from my friend and former fencing coach with a cute cat that made me laugh and smile. And all of these things together made it possible for me to get out of bed, throw a load of laundry in the washer, and attempt to do what I can with this day.

It’s not going to be a perfect day. I’m due for another Lovenox shot in my belly in 5 hours or so and that’ll sting and make me tear up, but it’ll be given to me by a kind friend who never ceases to make me smile and find courage.

I don’t always need a lot of courage, just enough to take the next right step, even if that’s sometimes curling up with a glass of chocolate milk and a good book. Today it’ll involve some time in prayer and then calling my senators to again stress my opposition to S. 720. S. 720 is a bill that infringes on free speech rights by potentially making it illegal for individuals, churches, and businesses (many of whom already participate) to participate in the Boycott, Divestment, and Sanctions movement.

Whether or not one agrees with supporting apartheid-like conditions and settlements that the international community has agreed are illegal, surely we can all agree that criminalizing boycotts is highly un-American. Unfortunately, one of my senators, Ben Cardin, didn’t seem to have read the bill that a lobbying group gave him before he sponsored it, based on his comments so far to the press. He’s said that he wants to “reword” the bill, but I want him to revoke his support. If you’re in favor of maintaining free speech rights in the United States, regardless of your views on Israel, please contact your senators to voice your opposition to S. 720. The ACLU has a great primer on the bill in regards to free speech. If you don’t trust the ACLU, Mondoweiss has a summary of positions from groups including Jewish Voices for Peace and J Street.

It’ll take some spoons and some courage to make those calls, but I believe it’s the next right thing I can do that will contribute to peace and goodness in the world. I can’t control cancer research. I can make sure my senator knows I’m paying attention and disagree with him on this issue.