Balloons, Breath, and Other Blessings

I blew up seven balloons today. Now, in comparison to your average birthday-party-throwing suburban mom, that's not much of an accomplishment. And to be honest, I have been working on building up my lung power for a few years now. But three Octobers ago, back in 2017, I didn't have enough wind in my lungs to make it up a few flights of stairs to my office, let alone blow up party balloons. I didn't know the reason at the time, but would discover a few weeks later that I had a trachea full of tumors—adenocarcinoma, to be exact. Lung cancer. Ugh. No wonder I couldn't catch my breath!

Fast forward to today, when as part of the Lungevity Foundation Breathe Deep Together event, I walked a little over three miles (which I now consider a short walk) with family and friends in honor of lung cancer patients, caregivers, researchers, doctors, and loved ones lost to the disease. When I was diagnosed with stage 4 disease in November of 2017, I wasn't certain I'd see the next November, but when 2018 rolled around, cutting edge targeted therapy had gotten me well enough that I was able to help co-organize and walk in that year's Breathe Deep Nashville event. I helped organize the 2019 event too, and walked, a bit more slowly however, having just finished a round of chemo that week.

This year we couldn't hold our regular community event due to the pandemic, but I'm grateful that my husband John, daughter Rachel, and friends Erica, Tara, and Ben could meet up to walk the course at Shelby Bottoms Greenway under an overcast October sky. Thankfully, the rain held off long enough for us get around the 5K loops. The annual event is usually a HUGE fundraiser for Lungevity, and this year's goal nationally is $500,000. I know it's not the best time to ask people for money, generally, but if you've got some extra jingle in your pockets and want to support the great work Lungevity does on behalf of folks like me (a living, breathing miracle of science), I encourage you to make a donation to my Lungevity fundraising team, The Litwits.

Oh, and there's also this to report: clear CT scans of chest, abdomen, and pelvis this past week. According to the best diagnostic machinery around these parts, that nasty ROS1+ adenocarcinoma is still sound asleep, snoring away somewhere deep in the cancer DNA. May the lorlatinib tyrosine kinase inhibitor keep on inhibiting! We'll scan again in December, adding in an MRI of the brain, so fingers crossed! Each day, each breath is a work of grace. And science. And I am ever grateful.

On Boring Old Hair

My hair has grown back, almost a thick as it used to be. While I didn't lose it all to chemo and radiation, after my second infusion, and again after a second round of brain radiation last fall, my silver-white locks fell out in small handfuls, like passengers abandoning ship. The once-thick mane (of which I was quite vain) thinned and thinned, but never so much that it felt necessary to shave my head. I was thankful for the strands that hung in there. The texture changed, though; whenever I combed what was left, it felt brittle and fake, like cheap doll hair.

Lately, the pandemic has everyone up in arms about getting their hair cut. We've all been doing various degrees of quarantine for weeks and weeks; salons and barbershops have been shuttered. We've squabbled up and down about when and how to get them (and lots of other businesses) back open. I'll probably just cut my own hair until I am confident the COVID-19 risk is gone. So maybe it's just that the salon question has made me pay more attention to what's been going on with my own hair, but recently I've noticed it's grown below my shoulders again and looks and feels like mine, not like a plastic doll's. The other day, I braided it into a couple of convenient pigtails and went for a bike ride. So what? Right?

Yeah, not a big deal. Kind of ordinary. Kind of boring.

Except for the cancer. Except for the depth of gratitude I have, now, for boring.

I have scans coming up in a few days. I hope the results are equally boring.

Betwēonum

Between. The word comes into modern English from the Old English; be (meaning by) + twēonum (meaning two). Between two things. Between yes and no is maybe. Between red and yellow some orange.

We are between the beginning and (we hope, someday) the end of a pandemic, our lives suspended...by...what? The strings of our masks, maybe?

I am between scans, between cancer-free (inactive disease, at least) and possible recurrence (this disease comes back...we just don't know when), in a kind of dangling dance between jubilant and cautious – what I've taken to calling my "little life of living large." And right now, the world is with me on this. We're not making any plans.

I walk around the neighborhood, keeping a safe distance from other walkers (though I long to pet everyone's dogs!), and it seems that all the peonies elsewhere have been blooming for weeks. Wet flowers topple their stems after rain in every yard except mine. My pink peonies are still shy, balled up like big marbles, and just starting to show a little color. In this faint pushing forth, they are between bud and full bloom, with tiny ants busying themselves at the sepals' nectaries and standing sentry against other would-be invaders. Nice gig if you can get it.

I've been in a holding pattern with the peonies. I know better than to fret–or to dream–about the imaginary future. But I fret and dream anyway. The virus. A new front porch. Flamboyant flowers. Kayaks. Scans. Shortages. Hiking for miles and miles through another country's mountains. Stop. I'm not going anywhere.

Grief and loss are strewn about the planet like wreckage after a worldwide storm. Except we're not after. We're now. Which is another way of saying we're in between. Now is always in between. Here. In the muck and almost-bloom of it. Yes, I'm not going anywhere soon. I could get used to this.

A Li'l Ragey

Some of my friends reading this post might also see me posting on Facebook or Twitter. And they might have noticed that I've gotten a little less flowery and a little more ragey on my socials. Rage is maybe my least favorite emotion. It eats me all up inside, loses me friends, and gets me the silent treatment from family, who are obliged to love me anyway (in the case of my rages, from a bemused distance). Nevertheless, I have given rage some reign recently. A little gallop in the wind, so to speak. An airing of grievances.

But I worry this rage could be unhealthy, so I'm trying to not feed it things like fear and negativity, gloom and doom. Because we know that stuff is only gonna grow wild, and it doesn't take much for it to sprout into a whole toxic garden of hellacious thorns.

Still, there is the current reality. It is what it is, and considering that reality, you know this rage isn't unfounded or misplaced. If you're reading this, it's quite possible you feel it with me. But when I try to put my finger on the exact cause or source of my own rage, what comes back is the lame phrase "oh....just.....all of it!" And by "it" I mean all the noise that comes in the whirlwind of living in honest-to-goodness pandemic times. The inane policies. The creepy conspiracy theories. The admonishments to do and be better humans. The face-palm-worthy stupidities of leadership. The limits on where I can go and whom I can see. The current efforts to undermine our electoral processes. The failures in protecting our essential workers. The pasta shortages. For real. Pasta shortages. I can't even.

Oh, and cancer. Especially the fact that clinical trials, on which so many late stage patients depend for treatment, are stalled because of the pandemic. Access to other treatments and surgeries have been delayed as well. That sucks too.

And the senseless, needless deaths.

People, I'm trying to turn my rage into good, to harness it as creative and productive energy. I'm trying to keep out of trouble and out of jail (it's nearly impossible to get good cancer treatment when you're a felon). But some days containing that rage, even to a speedy canter, is hard. When I express it, stomping around the house, shouting about the latest absurd headlines, bemoaning the fate of the country, it doesn't change anything. Except my foul mood. I do feel better after a good stomp. So go ahead, darlings, stomp and shout. Embrace your inner toddler for ten minutes, or ten days. It's fine. 

People who love me advise again and again...avoid the news, avoid the socials. They'll just make you upset.

I don't want to be that ostrich.

So I'm gonna ride this rage and hope it doesn't buck me off. And I'm gonna being fuckin' grateful I'm alive to feel it.

Listicles from a Plague Year

Stay off Facebook, they say. Stop watching the news. Meditate. Do yoga. Use this time to X. Now is the time to try Y.

Here's a list of ten things you can do to fend off boredom, address your fears, organize your home, and be a better parent/human/pet-owner/sustainable-gardener/atheist/christian/buddhist/poet/ teacher/citizen/doer-of-anything/while-not-doing-anything during the pandemic.

Hey, List-makers!

I'm not bored. I have plenty to do. Plenty to think about.

And I'm not doing any of it. Hardly.

More than one well-intentioned person has pointed out to me that Shakespeare did some of his most remarkable writing during plague times. That's awesome for him. I'm socially-distance-walking around my neighborhood taking pictures of flowers and posting them on IG because that's about the extent of my mental and emotional bandwidth right now. Oh, and I'm also lecturing my FB friends on the importance of political engagement and voting. Really.

The woman who delivered groceries to my door today was at least ten years my senior. I'm 57. Let's get fucking politically engaged over that privileged cancer patient shit. How did my cancer somehow trump her seniority? Isn't she supposed to be getting groceries delivered to her, too? Damn.

Breathe. Be grateful for now. Live in this moment. Yes. Of course. I'm especially good at that. I have metastatic cancer. I'm grateful for every day I wake up. I know the future is imaginary.

Seems like lots of other people are registering that too. We can talk all we want about hope, about "after this." I do it all the time, as in "for my next treatment after this, I'll try X." But we don't really know, do we? Not really. Not ever. It just feels...more so not ever now. Weird, huh?

I still think, though, that most of us are going to be okay. Eventually. That's not a scientifically supported observation though, just a rough calculation of the human spirit left on the planet keeping it spinning. A lot of folks won't be okay though; that's true, too—I think especially of those directly traumatized by illness, and the first responders and medical folks who have had to deal with impossible circumstances. And the economic catastrophes everywhere. But somewhere, in the misty not ever...well, I don't really know. Maybe ask one of Macbeth's witches.

Buzzed

In the past week on my social media accounts, I have added my voice to the shrill, to the complaining and impatient, to the fearful. We're all sounding the same notes. Yes, I'm a little afraid. I'm anxious. Like all y'all, I've been a bit cooped up in the days of COVID-19 and spring rains. We're also fretful about the well-being of the good folks we know who work in healthcare. All the very good advice out there on how to deal with isolation, summon equanimity, to live in the reality of pandemic times is, after all just, advice.

Yoga practice. Check. Going for walks. Check. Washing hands and staying home (except for solitary walks and the very occasional grocery forage), yes and yes. I'm catching up on reading, on those little projects around the house, etc., etc.

As a cancer patient, I've had some experience with social distance, keeping a low profile after infusion chemo, and I'd be lying if I didn't say that I kind of love it, at least without the infusion chemo part. It looks good on me. But I know it's awful for others who have lost work, who have had to adjust to working at home, who have to suddenly become school teachers to their kids AND figure out their economic lives. I know I'm fortunate to be able to work from home and not to have to worry about the educational well-being of little ones.

I'm not bored. Even scaled down and closed inside the four walls of my bungalow, my life manages to be over full and pretty content.

But there's a buzz I can't tune out. It's that conversation we're being forced to have, the one about who gets access to which resources. Who gets tested and who doesn't? Who gets treatment, and who doesn't? You've read and heard how the elderly, the "infirm", those with cancer or other serious illnesses find themselves among the unchosen, in respiratory failure and left to die so that those with more "prospects," the younger, the more "fit," get access to one of the too-few machines that could save a person's life. That buzz is so loud. It's a conversation too about the failure of policy, of the current administration's inability to understand and apply basic science in shaping a national response to our current circumstances. There's a recklessness in how the people in charge communicate, and an insidious divisiveness that spells out doom. I hear it even inside the brick and plaster walls of my cozy little house. It gets louder and louder and louder.

My health is good AND I have metastatic disease. I can say those things together because my last scans showed that I have no active cancer in my body, and I have no other acute illness at the moment. But my health is also fragile. Because my body is busy trying to keep the cancer suppressed with the help of daily oral chemo, and because I've undergone more aggressive treatment with chemo and radiation, I know my immune system is maybe not in tip-top shape. So, yes, I'm being super careful, and as I said before, mostly staying home.

NED. Clean scans. And I just had a birthday, my third since a Stage IV cancer diagnosis had me believing I might not last the year. My oncology team and I have worked hard to get me here. My health insurance has shelled out an awful lot of dough to keep me alive. While I love irony in a good book and appreciate satire in a late night monologue, I don't want to be the main character in a narrative that has me dying from the opportunistic infection of a little virus after pushing back a metastatic disease. I'm doing my part to stay safe. I just hope everyone else is too. Because that is all I've got.