This One Is Rough

"This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS."

                                                                                                -Tori Tomalia

Tori Tomalia was one of the first people I met who, like me, had been diagnosed with ROS1+ lung cancer. Well, to be honest, we never actually "met" in person, but the first time I sat down and Googled "cure for stage IV lung cancer," a link to her blog turned up just a short scroll down a page full of links to prognoses of doom. I read what the medical experts suggested about my disease and tried hard to get my mind around terms like "disease progression" and "morbidity." Things looked pretty grim.

And then there was Tori's blog, A Li'l Lytnin' Strikes Lung Cancer: Living, Loving, and Momming It Up with Stage IV Lung Cancer. It chronicled her life through, at the time, five (yes FIVE!) years of momming it up with a Stage IV diagnosis, but also reached back into earlier years, when her blog had a different name and told the story of her travels, falling in love, marrying, the births of her children, and life with her husband and three kids. 

The blog was funny, forthright, spirited, and hopeful. Her tone was so personable and engaging; it invited you in. Somehow, she could tell a harrowing story about living with cancer in a way that could make a reader laugh, or at least chuckle. Tori, it turns out, was a comedian. For real. AFTER her "terminal" cancer diagnosis, she and her husband, Jason, opened a brewery/comedy club in Ann Arbor, called Pointless Brewery & Theatre, where they made beer and made people laugh. They also ran classes and workshops in comedy and improv performance.

And she lived for eight years with a ROS1 diagnosis, surviving from clinical trial to clinical trial, treatment to treatment, as many of us do. She passed away this week.

In addition to founding a brewery/comedy club with Jason, Tori was a founding member of the patient advocacy group The ROS1ders, which supports patients and caregivers affected by this rare cancer, advocating for research, access to clinical trials, and building a community of patients, caregivers, clinicians, and researchers around the globe. I am grateful for this group every single day.

To live with a metastatic cancer diagnosis and to take up with a community of others who share that diagnosis, even an online community, means, inevitably, despite all the good things that community brings you, you'll be confronted with loss. Like lots of it. People with metastatic cancer live longer than they used to, sometimes, thanks to advances in treatment. And we are ever hopeful that the science will outpace the disease. But still, we run out of time.

I didn't know Tori. Not really. I'd never met her, except in Zoom meetings. But even without meeting her, it was easy to know that she was one of the really really good humans on the planet. She made the world better just by being in it. I miss her already.

Mayonnaise

I FaceTimed recently with a friend who has suffered from low vision all her life. It wasn't until she was a middle-aged adult that a doctor finally declared her legally blind, though she probably could have qualified much earlier. Up until very recently, with the use of adaptive technology, she could see super-enlarged type on the computer, make her own meals, and even do a bit of quilting. Though she hasn't been able to drive in years, she's been able to live relatively independently with some help from part-time caregivers and delivery services. That changed a few weeks ago when an ocular migraine further clouded her already shaky vision. 

She told me it feels like someone suddenly put mayonnaise over what was left of her sight. Now the light gets in through a white translucence, and there are shapes, shadows, things in motion, but when it comes right down to it she can't see. She just can't see. And she lives alone. It's terrifying.

My friend is seeking treatment, but appointment wait-times are long, and she has to arrange for transportation, which is not so easy in the rural/suburban community where she lives. She can't just call Uber or even a taxi service, and she hasn't the means, nor the desire to move to a place where such things are ubiquitous. Even if she could summon a car, her limited, fixed income would make using such services prohibitive, and the free services available to people with disability tend to be erratic in their scheduling.

Oh, and there's a pandemic, which makes all of that more complicated and worse. Of course.

So we talk about mayonnaise and make offensive blind jokes and cancer jokes to keep our spirits up. We also reminisce about that time decades ago, in school, when we thought we could do or be anything we wanted, which for us meant having lifelong careers in academe, enormous private libraries in our houses, and scholarly projects that required sabbaticals in the south of France. Instead, we're adorably chunky, late-middle-aged, learned women living creatively on slender means and making awful jokes about awful situations over a video-link like dystopic Jetsons.

I say to her "My brain feels like it's been mayonnaised." Every thought is slippery and cloudy. Cancer people call it chemo-brain, or brain fog, but I like my friend's simile better—mayonnaise being in places it shouldn't ever go. I have never liked mayonnaise, never willingly put it on sandwiches, won't eat salads made with it, etc. I even skipped the mayonnaise in France, where I've visited twice, and where, I'm told, it's particularly good.

So that's my advice. Skip the mayonnaise. Definitely don't put it in your eyes or your brains if you can help it. And don't get cancer or blindness. Or coronavirus. Stay as well as you are able, lovelies. I like being here with you, even in a pandemic.

The Condolences

I have typed the phrases "My condolences" and "I'm so sorry for your loss" into my various social media posts way too often—almost daily, sometimes several times a day—for the past few months. In part I blame my demographic. I'm a late-middle-aged woman with metastatic cancer trying her best to stay alive in the midst of a serious pandemic, a pandemic which also has exacerbated the opioid epidemic and prompted a rise in suicides. So many of my friends have lost not just one family member to COVID, but multiple—both parents, sets of grandparents, all four grandparents, cousins, uncles, aunts, siblings, children. The catastrophic loss of elder wisdom in our culture will leave us bereft for generations. Others have been so sickened that their quality of life for their remaining days is profoundly altered by permanent disability. I've expressed my condolences to so many friends and family members of people killed by COVID, and because I am connected to folks in the cancer community, we've had many final farewells there too. In some cases of people I know with cancer, COVID was the reason for their passing, and cancer was cited as a "co-morbidity." I'm not a physician listing cause of death, but it seems to me that if a person with cancer contracts COVID and dies of respiratory failure, the cause is COVID, not some co-morbidity.

What an awful thing to ponder, your co-morbidity. Ugh. And to have arrogant, healthy politicians arguing about which caused a victim's death, the COVID or the "co-morbidity," is insulting. It reveals their ignorance about the risks we all face from pernicious respiratory illness, as well as their disregard for those of us who are at greater risk through no fault of our own, including the elderly. (The politicians on the right especially talk of how it's mostly the elderly being at risk, as if our elders are just expendable, so long as everyone else keeps well, which isn't happening, by the way.) Am I more likely to die if I get COVID than someone else without cancer would be? Probably. But will the cancer have caused my death? The combination of COVID and cancer? Or just the COVID, since my immune system has been busy keeping my cancer in check? It wouldn't matter to me. I'd be dead. 

And yet, currently, people with cancer under the age of 75 don't necessarily yet qualify for priority vaccinations where I live. So, that's not awesome news.

My socials have carried the sad news of many deaths from other causes too. The suicides. The car and motorcycle wrecks. The overdoses. The celebrity deaths (from COVID, cancer, overdose, suicide, old age). The beloved, aged relatives whose time had simply come. The beloved pets who crossed the rainbow bridge to pet heaven. My Facebook feed is o'er full of obits. I type, over and over and over: My condolences. I'm so sorry for your loss. Prayers for you and your family. Lifting you to the light. Etc. Etc. And I mean every word of it, and even more than those formal words say. What I mean is this: if I can hold even one tiny particle of your grief for you, help you carry it in any way, I want to do that. Because you've helped to carry mine. It's what friends and family do, and even the most superficial of "friends" on social media do, because right now, there is just...so...much collective grief. We could all use a little help.

And of course let's not forget deaths in Washington, D.C. caused by the actions of thugs and traitors and a traitor-President who needed to be removed from power as soon as he started spewing lies about the election results. Don't get me started on that heavy shit too. Peace, peace, peace, y'all.

The bleak January skies are making me both rage-ful and ponderous. Thank goodness my Christmas amaryllis has decided to bloom. Also, there are buds on last year's orchid, and store-bought flowers to ogle as well. In a few weeks we'll see forsythia and daffodils gilding the lawns of Nashville. Beauty and hope of more. And gratitude for this life, even stained and torn as it is by grief. We're living it, even when it's hard. That's the balm, today, along with the hope for fewer condolences as vaccinations proceed.

Happy Fourth

 

Happy fourth day of Christmas! It's also my fourth Christmas season alive on the planet since being diagnosed with incurable cancer. Yay for survivorship! On top of that, it's the first year since that diagnosis that the awful cancer hasn't been actively trying to kill me—my most recent scans show I've had a whole year of disease stability, in this, the most unstable of all years my generation has ever seen. So, ya know, deep, deep gratitude here, because I love a cruel irony that keeps an otherwise healthy, travel-loving cancer patient from running around the globe doing bucket-listy things during said spate of good health. But there's privilege at work. I didn't do anything to deserve being cut such an easy break at such an awful time. 

So here I am, for the moment, well enough to work (yay for editing projects!), and fortunate enough to do that work from home. Also on the list of blessings: there's a stocked pantry and fridge (and liquor cabinet). We got to see the bright--heavy conjunction of Saturn and Jupiter just over the horizon a few days before Christmas. We decorated the bare Bradford Pear trees in the front yard with Christmas ornaments and put up some lights and garland, and it only felt a little forced. I made a wreath and an advent calendar (both of which turned out okay) and tried to learn knitting again, and failed, again. My family gave and received nice holiday gifts (nothing too extravagant, everything thoughtful); we had delish holiday fare on the table, and everyone in my household and extended household has kept well.

Still, the shadows fall deep in the winter darkness, and they chill some part of my soul with fear and anxiety. Two of my best friends risk their lives every day on the COVID frontline, and I worry about them constantly. One of them got the virus and, thankfully, recovered after being pretty damn sick. 

December has some tough anniversaries for me too. Last year in December I lost two friends to cancer, one on December 4 and one on Christmas Day. The year before that, my dad died on December 3. As we approach a new year, I'm reminded that I lost another friend to cancer in this past year, another 2020 shadow. In March of 2020, my city was hit with devastating tornadoes, and on Christmas Day, just four days ago, a man bombed our downtown. 

And I'm still alive.

I'm doing, what they call in Cancerland—or probably in any Gravely Ill Land—survivorship. I'm living, with the disease in the midst of all that is crazy in the world. Phrases like "for now" "at the moment" "stable" "disease in check" pepper my responses to queries about my well-being, underscoring the temporariness of it, the other-shoe-ness, but also calling attention to the fact that I am in the most enviable of positions. I am well. Well enough, anyway. And I have friends and family members who have cancer and/or other severe health problems who are not well enough, who are struggling with treatment decisions, suffering from severe treatment side-effects, struggling to access treatment, friends who are actively dying as I write this.

I don't say that to be grim. We all live in this world, with its shadows and griefs and aching hearts, with lives approaching terminus. I'm not telling anyone something they don't already know. The losses, the anniversaries of the losses, mark the time for us; weirdly, they become steady points of reference in the before and after of this crazy kinked and loopy path we're on. Periodically the iPhone and the social media accounts throw up "memories" (gee thanks) that startle—oh! that picture was taken BEFORE diagnosis; that one was taken the last time I saw Ann, and that one was the last time we were all together. 

The one for this post was taken for The Fourth Day of Christmas in the fourth year of diagnosis. Four calling birds. Three french hens. Two turtle doves. And a partridge in a (Bradford) pear tree. Counting blessings. So many. So very many.

On Scanxiety

I have scans tomorrow morning. They are “routine,” a regular feature of the territory in Cancerland. These hulking clanking machines, these sound tunnels and sliding beds, making images of my insides with magnetic field & radio waves, with x-rays, with contrast dyes. 

I messaged a friend who has breast cancer the other day about the things cancer patients put their bodies through in order to stay here and hang out with all y’all cool people. The needles, the time spent in tubes getting pictures of one’s guts or brains made, the ports and drains, the insanely priced pharmaceuticals, the side effects. The stigma, especially with lung cancer. But it beats the other option.

When I first started having scans after starting regular treatment, I always got terribly anxious the day before. What if the treatment had stopped working? What if the machines found more disease, more tumors, more spots? What would I do then? 

Well, then the machines found spots. The cancer had outsmarted the inhibitor. So we tried a new inhibitor, and that worked for several rounds of scans. I was so elated the first time I heard No Evidence of Disease. But of course things didn’t stay that way. More spots appeared. We did infusion chemo and radiation, and went back to the inhibitor, which has held me for about a year now.

I guess what I mean to say, is that I still get scanxiety. And because my disease is metastatic, the reality is that it will probably return at some point. I’d like to focus on the “probably” in that sentence, because that gives us some wiggle room. Probably isn’t definitely. Still, the likelihood is pretty good that at some point something will show up on the scans. What that point in time is remains unknown. 

So, perhaps it’s not the prospect of the scans that produces anxiety, but rather the specter those scans raise of the unknown, of having to move from one way of thinking about the world and one’s health to another. The prospect of the sudden pivot.

The good thing is that at this point, we’re not out of options if something does show up. Still, I’d rather we didn’t have to discuss them this time around.

I’ve taken up a mantra to help steady my psyche while I’m in the scan tube. It’s from a 14th Century Mystic, a nun who lived in isolation for a long time and who eventually became an abbess. In the book of “showings” or Revelations of Divine Love, Julian of Norwich shares the wisdom she found in holy visions she had and in the voices she heard comforting her in a time of illness and distress. She believed in God’s assurance that “All shall be well, and all shall be well, and all manner of things shall be well.” 

She also, reportedly, liked cats, as shown in the picture above. 

I like to think of Mother Julian’s words writ large on the cosmos. No matter what happens with my scans.

And all shall be well, and all manner of things shall be well. 

 

Geese and Gratitude

Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.

                    Mary Oliver, "Wild Geese"

It snowed today. And got dark at 4:30. It will get darker for longer each day until December 21, Winter Solstice. I actually love late autumn—the grackles, winter's voice clacking in the trees, that brace of frigid air, the grey skies and foreboding of early-darkening days mixed with hope, the anticipation of light's return. November strips the last of the foliage off, and there they are—the squirrels' nests and mistletoe, the deer in the wood, the formerly hidden bungalow at the end of the lane, the orange berries on tough green bittersweet vines, the red on waxy holly. Yes, darkness, but also, revelation, evergreen, and bright spots of color. The season's bleak beauty has an archetypal narrative arc that resonates pretty deeply with my own temperament.

While I was walking through the neighborhood yesterday, I saw someone had painted the entire text of Mary Oliver's poem "Wild Geese" on a piece of wood and propped it up in their front yard for all to read and love. It's one of the best poems ever, and you can read it here if you don't already know it. I don't know who lives in this house, but I wanted to go up to this neighbor's front door and knock, and when they came out, I would have bear-hugged them and kissed them on the mouth, and said "Yes! Yes! Thank you for reminding me how beautiful this world can be, full of poetry and ordinary glories!" For obvious pandemicky and politeness reasons, I did not, but the yard poem is one of the things for which I am incredibly grateful this month.

This November has been blurry, no—I've been unfocused, vaguely fretful, an emotional mish-mosh of gratitude and wistfulness, and, yesterday, I was overcome with a kind of keening nostalgia brought on by over-exposure to Christmas lights in cozy windows during a walkabout on a cloudy day. Each day I set an intention (put up some damn decorations, write that letter, respond to so-and-so's email, finish editing that chapter, write those portfolio comments) and fail to follow it. I set another the next day and get halfway. My actions seem to trail off into broken sentences and half-formed thoughts. 

What the heck is wrong? 

Nothing.

It's been a year since I finished four rounds of infusion chemo and more brain radiation than I care to consider, and I still take oral chemo every day. Metastatic cancer patients are always waiting for that other shoe to fall, so nothing new there. I've been well through all of it, more or less, in this overall shitty year for everything else besides my body, with my disease remaining stable. Still, I'm probably about as depressed as the next person because of the pandemic. I admit that I got a little too obsessed with the election, but that's over now, and I've more or less detached from things political (except for the Georgia runoff) because they make me too crazy.

I'm okay. I have scans next week. I remain hopeful. So there it is, melancholy for no reason. 

Things I neglected this past month:

• Lung Cancer Awareness Month (I did a little lung cancer fundraiser in October, so I didn't think I should ask people for money again, times are tough, etc., and I was so sick of social media after the election that I just couldn't...I don't know...make the ask, again)
• Correspondence (email, letters, texts, thank you notes, etc., I promise I am not ignoring you; I'm just...ignoring everyone.)
• Diet (not gonna bore you with the details...just...ya know...way.too.heavy, thanks lorlatinib)
• Work (said yes to every likely project while still not finishing ones already in line)
• Fill in the blank (pretty sure I've left lots of things off the list, but you can let me know)

Good things that happened in November:

• Thanksgiving (a favorite holiday)
• Mom's birthday
• I finished editing a memoir by my friend Seth Walker, which is available for pre-order here:Your Van Is On Fire
• I've made progress editing another book on a really interesting and surprising aspect of Civil War history written by a gentlemen here in Middle Tennessee, and which I hope will be published in the coming year.
• I set up my fundraising page for the ROS1ders, to collect donations for research projects we have a direct hand in creating. I'd love for you to check it out and give us some $$$$ for research.
• I got to be featured in a video about lung cancer for a series that should run on WebMD in January.
• I put up some Christmas lights yesterday and got an Advent reader in the mail. John got me a little house-plant pine (Norfolk Island Pine) to decorate (we don't go in for cutting down live trees), and some poinsettias for the living room. So yay for summoning holiday spirit even though we're all so fucking depressed.

December Hopes:

• Raise more money for lung cancer research
• Good scans, stable disease (NED)
• Finish all editing projects for the year
• Finish all portfolio assessment work for the year
• Begin putting a poetry collection together
• Make some art
• Celebrate Hanukkah-Solstice-Christmas-Kwanzaa-NewYear's with joy and hope
• Keep showing up when I remember where I'm supposed to be

 

On Consequences and Cancer

This week, I finally got to take a genuinely deep breath, one I've been holding for four years. And not a day too soon. Tomorrow, November 9, is the third anniversary of my metastatic lung cancer diagnosis. That's right; one year after our last presidential election, the outcome of which I thought was one of the worst things that had ever happened, I got even worse news. I—a non-smoking, kale-eating, yoga-practicing, peace-loving, 54-year-old healthy woman—had (and still have) late stage lung cancer. There are things worse than President #45.

Today, I am breathing more easily both literally and figuratively. Thanks to excellent care and cutting- edge treatment, my most recent scans show that the very rare form of lung cancer I have is currently stable. And thanks to what I consider to be a hopeful election, I am less fearful about my ability to continue to access great health care here in America.

Americans go to the polls in their own self-interest. When they step into the voting booth, they take with them their parents and grandparents, along with their kids. They take their work, their health, their schooling. They vote with their gender, their race, their age. They bring their religion and/or other ideologies that they probably inherited from their parents. They take their wallets and houses and communities. They take whatever priorities they have and vote for the people they think will best address them.

I voted for myself. I voted for my cancer. So I couldn't vote for the candidate who scoffs at science and scientists, who has allowed a pandemic to rage, unabated, and who, for four years, promised "beautiful" health care reform that never showed, and instead, gutted the plan we already had. I couldn't support an administration that cut funding to important health care institutions and agencies, like the National Cancer Institute. Instead, I voted for a candidate who supports universal access to affordable health care, and who, before he ran for office, ran a cancer foundation to honor his son who died of brain cancer, a candidate who understands that the answers to solving our greatest public health crises are found in science and reason, not hot and paranoid politics.

I am a person of faith who tries, every day, with varying degrees of success, to be compassionate. So I voted for the candidate who went to Mass and then prayed at the graves of his dead children and wife on election day. I didn't vote for the guy who held a Bible upside down for a photo op in a churchyard where resting protesters were teargassed and driven violently away.

I am a person of small means, economically speaking. I voted for the candidate who grew up in a working class community and understands that struggle, not for the one born with the silver spoon.

I have friends and family members of all races. One of my closest friends is blind. I have so many friends in the LGBTQ+ community, and family members who are trans and gay. I have friends and former students who are Dreamers. I come from a family of immigrants. I couldn't vote for the candidate who denies the vulnerable protection and justice, who calls them criminals and thugs.

I am a writer and poet. I couldn't vote for the candidate who doesn't read, who doesn't love poetry and art and good music, who butchers language with hateful rhetoric. And who doesn't like dogs. So I voted for the guy who quotes Seamus Heaney, who has two big dogs, and who married an English teacher who isn't, thank goodness, a supermodel.

Elections have consequences. I like my chances with this guy.