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.

Hope Isn’t Easy

The usual TW of discussion of my religious beliefs as well as some profanity. Also this is a really long post. No apologies for that, consider yourself warned.

“Clusterfuck” That’s the word for today’s reading in the #FuckThisShit devotional calendar. I saw that, and before I even opened my Bible, I found myself laughing and shaking my head. Because yes, that is the word for how my life and how this world, this country feels right now. It feels like everything is in a giant clusterfuck.

On the corresponding, not so NSFW, #RendTheHeavens calendar it was “Roll(Out)” which just made me think of Transformers. My husband had great memories of the show while I had never even seen a single episode of the show. So, early in our dating, I bought the DVDs and we watched the original show together.

Thinking about Transformers reminds me of optimism. The Autobots were always able to save the day with (other than in the movie) no deaths (because, well, kids’ show). It also reminds me how simple life was back in that studio apartment where we watched the episodes together. We didn’t think about life-changing illnesses or sudden heart attacks.

It’s not like life was 100% perfect. We dealt with job loss and the search for a parish home. But, there wasn’t anything big that challenged my optimism. I remember while I was between jobs, after receiving another “we really liked you, but that one other final candidate had just a bit more experience” email, I decided to call my dad.

I was frustrated and worried I was letting him down. However, Dad assured me that I wasn’t letting him down. Actually, he was proud of me. He liked that I was reaching for my dream of making a difference. He was also certain things would work out. He was right, of course. Within a few months of that call I was working for my dream organization with one of the best bosses I have ever had.

For most of my life I have proudly identified as an optimist. Until mid May 2016, any time I felt that optimism wavering, I could (and generally did) call Dad. I wasn’t naive and I didn’t think things would always be perfect, but I never had much trouble finding hope. When I did struggle, Dad would have the words to help me.  I had my crabby moods and frustrations, but also hope and faith that things would work out — that hard work would pay off, that I could change the world because the world was always getting better even if it needed a push, that I could get through anything.

Part of why I was proud to be an optimist, was because it was something I shared with Dad.

Then I lost my dad to a sudden, unexpected heart attack. Then I learned my cancer was back. Then the tumor turned out to be much bigger than expected. Then my beloved cat got so sick he needed surgery followed by an emergency blood transfusion and a stay at an intensive care facility. Oh, then there was my radiation treatments. Plus shitty things happening in my friends’ lives.

Plus there was everything going on in our country and in the world. The massacre at Pulse; anti-immigrant and anti-refugee talk; bombings causing people to need to flee their homes; a candidate for president treating sexual harassment and assault as no big deal and people I’d previously respected claiming “that’s just locker room talk” (no, it isn’t); overt racism; people saying crap like “blue lives matter” while acting offended by the idea that black lives matter; somehow the most overtly racist, in-bed-with-a-foreign-power, neo-Nazi-enabling, anti-feminist, completely unethical fraudster of a candidate won the Electoral College (with Russia’s help); the whole of the GOP rolling over, including saying that it doesn’t matter if the president elect tweets falsehoods; acts of vandalism and violence from the fraudster’s supporters; the continuing destruction of Aleppo; the daily desecration of this country’s Constitution; and so much more.
image of a deep well with a branch across the topMy optimism isn’t so easy to find in the clusterfuck that life seems to currently be. At times it feels like my faith and hope that things can improve, let alone that they will improve is barely present. My hope seems like a cheap and dying flashlight at the bottom of a deep, dark well. I worry that maybe I’m not an optimist anymore, and that sucks.

At a time when I most need to have my dad with me, the aspect of him I most identified with feels like it might be gone. I’m not as generous as my dad was. I’m certainly not as calm and logical. There’s a lot about him that I don’t share, or at least don’t share now, and am not sure I’ll share again. That’s scares me.

But I do share his faith. Dad always said he suspected God was either laughing or crying (or both) at the divisions we humans make. So to Dad, the fact that his parish was Roman Catholic and mine is Episcopalian really doesn’t matter. It’s the same faith at heart.

While talking with my husband last evening, he suggested that my faith and wanting to be an optimist, are optimistic in nature. The fact that I haven’t given into total despair, that I’m not certain things will always be the darkest timeline — that’s hope and hope is a form of optimism.

And I do have hope. It’s dim, but it’s there. I hope that things will get better. I still think it’s worthwhile to fight for equality regardless of gender, race, creed, or sexual orientation; to speak out for animals; to care and not retreat into my own bubble. I think it’s worthwhile partially because I couldn’t live with myself if I ignored injustice. However, I also think it’s worthwhile because I think the fights can be won. It won’t be easy and we’ll suffer defeats. We won’t immediately stop the violence and mistreatment. But we can and will prevail, so long as we don’t stay in despair.

So what’s today’s verse? Revelations 22: 18-19

I warn everyone who hears the prophetic words in this book: if anyone adds to them, God will add to him the plagues described in this book, and if anyone takes away from the words in this prophetic book, God will take away his share in the tree of life and in the holy city described in this book.”

I don’t have an easy interpretation. It’s the type of verse that makes me hesitate and even worry a little. Is it adding to the words to write about them? To understand them only in English? Is it taking away from the words that it’s been a long, long time since I tried to read the entirety of the Book of Revelations? I don’t know and that leaves me with some fear.

Underneath that fear? There’s hope that this someone comes back to the core faith that God so loves this world, and that somehow there are better days ahead. Somehow I have hope that the world can be healed.

In the words of a Jesuit from Xavier: “Hope is not answers or solutions, it’s faith that something is waiting for us, that there are possibilities. Hope isn’t easy.”

Nothing worthwhile ever was easy.