Directions to the Hope Store | Dec 12 2021

December 12, 2012

I. Knowing/Not Knowing

When someone asks how I’m doing, my usual response is a cheery, “Goin’ along. How ’bout you?” That sidesteps the complexity that is living with lung cancer. But every once in a while, someone looks at me closely, intently, and follows my response with, “No, really. How are you?” Bam, those tears just well up to the surface. They don’t spill over, but I’m sure my eyes glitter like little diamonds (or someone on massive amounts of illicit drugs.) So I’m sitting with a lovely person, feeling cared for, plus All The Cancer Feelings, while at the same time, I’m hovering outside myself going, “Girl, you’re really sad. Why didn’t you tell me?”

I can live Now, Later Today, sometimes even Tomorrow. I just can’t see beyond that– it’s like my view slams into a wall of cement. I simply can’t see myself living, working, doing stuff, in future circumstances. (Well, except for cake-baking and cake decorating classes. I don’t know why, but I can see myself doing those. The hovering me goes, “Cakes? Cakes?? Girl, that is just weird.”)

So, how far ahead should I plan? Should I plan to work? Would it better to plan to not work? On a recent walk, I told M I was thinking I’d like to teach one or two high school classes. He nodded. I could tell he was thinking carefully. Then he said, “Maybe substituting?” BAM. Oh, of course. What if the cancer comes back? Hovering Me frets over my emotional state as I pause mid-step. “You’re in public,” she cautions. “Keep it together.”

The pharmacy owes me 240 ml. of the fancy antibiotic that I now don’t need because I am below the daily 15 mg. of prednisone. (HOT DOG!) But is there a guarantee that me and prednisone are breaking up forever? Will the medicine be stable in my house if I pick it up? I let days go by until Hovering Me prods me to simply call and ask. When I go to pick it up, Hal the Pharmacy Dog is back from doggie training school! Now that’s a good reason to go to the pharmacy. Hovering Me wants all the credit: “See? See?! Wasn’t that just lovely?

In all truth, I am writing this in the middle of a swath of not-knowingness. Waiting.

And I have to think that my little cloud of gloom has to be related to the surveillance scans that are coming this week.

II. Directions to the Hope Store

In one group I follow on Reddit, there’s a weekly Rant post, capital letters on, no judgements allowed. (Writing in all capital letters is the equivalent of shouting.) Recently, I wrote this:

THERE’S ALSO A LOT OF “HAVE HOPE” BUT I AM BEGINNING TO THINK I DON’T. I’M DOING ALL THE THINGS— SUPPORT GROUP, SHRINK, MEDITATION, EXERCISE, BLAH BLAH BLAH SO DON’T WORRY. BUT HOPE? DUNNO. ANYONE KNOW WHERE THE HOPE STORE IS?

One response:

HELLO FELLOW MEMBER OF THE SHITTIEST CLUB ON EARTH!

CANCER FUCKING SUCKS BALLS AND YOU’LL FIND PEOPLE SAY THESE PLEASANTRIES BECAUSE IT MAKES THEM FEEL BETTER. IT REALLY HAS NOTHING TO DO WITH YOU.

HOPE IS A VERB MY FRIEND. IT IS A MUSCLE YOU NEED TO USE IT OR YOULL LOSE IT. HAHA

She made me laugh, then think hard. A verb. A muscle. I carried these thoughts for days. (Plus, I also reached out to the writer of this delightfully profane thought and we’ve been messaging back and forth.)

Here’s what I’ve been thinking about hope: It’s future-oriented; it’s based on a belief or beliefs; it is made manifest in action toward something.

People have been thinking about hope for a very long time. Here are some random things people have said about hope, taken from random spots on the internet.

“Where there is no hope, it is incumbent on us to invent it.”  Albert Camus  (Is he suggesting hope is a necessary fiction, one we are responsible for creating?)

“Hope smiles from the threshold of the year to come, whispering ‘it will be happier’….”  Alfred Tennyson (O.K., so hope and happiness are connected for him. If hope is a promise of happiness, is it a false promise? A form of self-deception? Is this guy just indulging in a PollyAnna fantasy?)

“There is some good in this world, and it’s worth fighting for.”  J.R.R. Tolkien  (Believing goodness not only exists and is a building block of hope, but most important, is worthy of a battle.) (You can see the impetus of his trilogy.)

 “Remember, Hope is a good thing, maybe the best of things, and no good thing ever dies.”  Stephen King (There’s that “good” thing again. And that belief thing. And the certainty that is a promise to any reader.)

And, finally, my favorite:

“Hope is a state of mind, not of the world. Hope, in this deep and powerful sense, is not the same as joy that things are going well, or willingness to invest in enterprises that are obviously heading for success, but rather an ability to work for something because it is good.”  Vaclav Havel   (Good. Work. Belief in the future. There are no promises, false or otherwise, in this perspective of hope. The belief, here, perhaps, is that goodness exists and exists within something tangible.)

 But if the view of the future is a blank cement wall, then what? What if I feel mostly…stuck?

III. Known Things

• Lung cancer is a persistent little devil. It develops resistance to treatments, changes mutations, can change from non-small-cell to small cell, which is much, much worse than non small-cell. (Having NSCLC is reason number 1 of a billion that I am lucky.)
• I have two genetic mutations that are known to be oncogenic. One mutation is more common, one is less so. The one that is more common has a list of drugs that are targeted specifically to stop it in its tracks. (HA! Take that, you stupid mutation!) These don’t cure, but they extend life span and QOL (quality of life) until the next, better option comes along.
• The one that is less common? (That’s an EGFR mutation, S768i, a point mutation on Exon 20.) For those of you who like to geek out, here’s Hitting the Right Spot: Advances in the Treatment of NSCLC [non small-cell lung cancer] with Uncommon EGFR Mutations. Pay attention to the gentle euphemisms: “poor response” [to treatments for more common EGFR mutations] and “worse prognosis.” If you can wade through the research lingo, there are some numbers associated with these– on second thought, you could just take my word that they are not designed for Hallmark greeting cards.
• And, the field of lung cancer research and treatment is exploding. The vision in the cancer community is for lung cancer to become a chronic, treatable condition, much as HIV has.
• And, I have been diagnosed relatively early in the game– most people are at stage 4 when they are diagnosed.

I try to keep my game face on. I mean, nobody likes a whiner. But CancerShrink talked me out of my tough-girl stance last week. This is really, really hard, he said. Then we sat quietly for a little while.

IV. The Thing About the Future

I am a planner. A doer. I’d like my answers now, please, with a side order of hurry up. And, as I keep discovering with each new phase of the lung cancer journey, that’s just not the way this works. There are no predictions, few sure answers. There’s only the unpredictability of waiting, the daring belief that good lies ahead, and the conviction that you’re willing to work for it. For this girl, today, that’s a bit of a tall order. BUT, here’s a start:

First, it’s not directions to the Hope Store. It’s directions to the Cope Store.

Second, if CT and other scans are going to be the new markers in my life, then I’ll use them. Set goals, plan activities that have half-lives (forgive me– I can’t help but think in terms of radioactivity) bounded by the scans. That way, I can assess if my plans need to change in order to accommodate cancer-y things.

Third, I love being alive.

So, here’s the challenge: do I dare to have hope? Because, today, having hope strikes me as an act of audacious boldness.

Remember that old beer commercial, Go for all the gusto you can? Well, then. Let’s belly up to the metaphorical bar. I’m buying.

And if I’ve got a few tears in my eyes, just ignore me. I’m working on it.

Images

Trees by AlkeMade from Pixabay
Cake from For Goodness Cakes
Thundercloud by OpenClipart-Vectors from Pixabay
Anemone by Pezibear from Pixabay
Pig by Annette Meyer from Pixabay
Benches by Pepper Mint from Pixabay
Schlitz ad: shamelessly purloined from a Pinterest board, undoubtedly stolen from somewhere else