Krista's blog

I am writing with amazing news. I am feeling good again!! Mostly, my energy is back. I ran three and a half miles this morning. More dramatically, I can walk up the stairs without needing to catch my breath. Having my energy back makes me incredibly happy and grateful.

There was a moment when I was feeling really low a few weeks ago, physically and emotionally drained. I tried reminding myself that everything passes, that this would pass and change. But then I thought, ugh, that means the times that feel good pass, too. That felt like awful news then, but you know, it’s OK with me now. The sun is out and my mood is up. Even if that’s temporary. On Monday I went for a run and had an idea for writing, and I came home and wrote a 15 page essay that I’m excited about! It’s wild to be getting to know my creativity more, seeing how closely correlated it is to my energy.

I’m also excited about going dancing this weekend. And not just any dancing — dancing for a cause. Movement Voter Project is doing a dance-a-thon this Saturday to raise money for grassroots organizers doing movement building and voter turnout this election season. It’s one of the best ways to give money this election season, if you ask our biased household. (Burke is now working for MVP.) Anyway, if you, too, want to stop the rise of white nationalist fascism and you want to support amazing social justice organizations at the same time, you can sponsor me and give to MVP. (The dance for democracy is this Saturday in Seattle. You can also JOIN ME if you want!) I’ve put together a team, and we’re looking for team names, too. Feel free to submit your ideas.

Other updates. My hair is growing back — on my head and legs. Both feel so welcome. I am now almost two months into my hormone-suppression phase of treatment. I feel much more emotionally stable this month. Maybe my body is getting used to it. Maybe the acupuncture is helping. Maybe these pills to reduce hot flashes are helping me sleep through the night, and that is helping me feel better. Who knows. I am grateful.

A downside: Fucking capitalist medicine. I found out that my “co-insurance” for this drug that is supposed to help prevent cancer from returning is $500/month. I want to scream at someone, at anyone who defends our current health care system, that THIS IS WITH GOOD HEALTH INSURANCE!!! What about people who don’t have an extra $500 a month? Who are probably also the people who don’t have my “good” health insurance?!?! I looked at the bill, called multiple people at Swedish and Kaiser, and found out there is no way around it. In fact, some kind person in billing looked it up and found it would be marginally more expensive if I switched to Kaiser (which would, unfortunately, be more convenient.) All this means that if I want to take the drug with the highest probability of keeping the breast cancer from coming back (don’t worry, I will), it will be $500/month for five to seven years. It beyond enrages me that some people are choosing between Lupron and clothes for their kids, rent, books, ice cream. Anything. We could do so much better.

Off my soapbox, I’ll share one more piece of good news, related to my energy, to my wonderful friends, to finding my way into my new self. I taught my first yoga class in nearly a year. It felt so good. I love creating welcoming, mindful, playful, spiritual, body-positive community! I’m grateful to Susie for encouraging me to join her gym and sub for the yoga teacher, plus love from my former students who keep asking me gently when I’ll teach again. I’m going to sub again (this time hybrid, so friends from far away can join) a couple Monday mornings in May. Let me know if you want the link.

And thank you for reading. And for being willing to wait to celebrate being through the hardest parts until I was ready to celebrate. I am finally there. Not done, but feeling celebratory.

I am coming through yet another hard phase of this cancer experience — this time, fighting a cold or flu that has lingered for weeks. The physical experience of the sickness has been relatively minor, but still hard. I also started the hormone suppressant drugs three weeks ago, and I think I’m also pretty low because of the drastic shifts to my chemical body.

I haven’t had enough energy to exercise for weeks, which feels awful, especially since movement is usually my easiest way out of a rut. But more excruciatingly, I have felt like I’ll never have the energy to exercise again. I know that sounds extreme, but somehow the physical lows of cancer and chemo, even when they’re not-so-low, have taken me to deep emotional lows. It feels something like depression. I almost dropped out of grad school a couple weeks ago when I felt no creative energy, and, more dramatically, I felt like I would never have a creative impulse again. (Full transparency — in the midst of that, I did have short windows where I willed myself to write and turn in work, and my mentor says it’s great work. She is a wonderful writer, so I am trying to believe her.)

I was listening to one of my favorite podcasts this morning, “Death, Sex and Money.” (I mean, there are so many good political and comedy podcasts out there, and some of those are also favorites. See “Scene on Radio” and “The Handsome Pod.”) I love “Death, Sex and Money” because the interviewer is so good at asking people hard questions, then giving space to the guests to reflect on hard things. Today I listened to the latest episode, an interview with a former professional climber who got ME/CFS (aka chronic fatigue syndrome.) I won’t tell you about it — you should go listen (and I haven’t even finished yet.) But I felt so much kinship listening to a disability/chronic illness story that is not about overcoming or even a clear ending. During the interview, the former-climber describes lying on the couch with his an eye mask blocking the light because that’s what he needs to get through the interview. He is making meaning, yes, and he has lots of wisdom gained. But he does not have a “happy ending” to his story of chronic fatigue. I am so relieved these days to read and hear stories that do not have happy endings.

When Lucas was a baby, a friend gave him a copy of Zen Shorts. It is a kids book version of ancient Zen parables. I read him the book over and over because they were stories I needed to hear. I was especially rattled by the parable of the farmer who keeps having, apparently, both wonderful and terrible luck. Something happens in his life — good crops, his son not being conscripted into the military. Neighbors say, “what good luck,” and the farmer answers, “maybe.” After each windfall there is some loss — locusts, a broken leg. Each time there is tragedy the neighbors say, “what bad luck,” and the farmer replies, “maybe.” At least in the children’s book version of the story, there is no end to the cycles of gain and loss. This struck me as so much more real than the hundreds of children’s books we read that narrate a story where something bad happens, then an ally or wisdom arrives, and things are repaired to an equilibrium state of “good.” I want that to be true so badly. But Jesus. I cry every time I read the news right now. Obviously the equilibrium state for our world is not “good.” It is gain and loss. It is power and greed and genocide. It is love and resistance. It is birth and death. Both, all the time.

This weekend I met yet another younger woman in active treatment for breast cancer. (This means I now know five people, women in my friends-of-friends circle, who are currently getting chemo/radiation/hormone therapy for breast cancer. Not to mention all the women in my life who have been through it.) We were in the corner of a loud bar at a birthday party, leaning in and, ten minutes into meeting, talking in shorthand about some of the most intimate parts of our lives. It was so relieving to be able to talk in almost medical code about our unique but similar experiences, talk without explaining the hardships, headaches, and even the ridiculousness of this experience. It was good to be able to talk about mixed feelings about my choices with someone who had made different choices along the way — and who could understand, deeply, the ambiguity of medical decisions that everyone else assumes are cut and dry. It’s not that we have cancer and then don’t have cancer. We have cancer and then play the odds, try to balance risk and suffering with the odds of recurrence. It is a strange place to live, and it is so good to connect with others who are in it.

I wrote last time about wishing for a hero’s journey through and beyond cancer, but I mean that in jest. Or in a wink, wink, I know it’s problematic way. The hero’s journey is so individualistic. Often so neat and pat. Somewhere there is a smart article in The New Yorker critiquing that hero’s journey as a masculine ejaculation story arc — I wish I could find it, maybe one of you has it? Anyway, if I remember correctly, the author writes about a femme story arc being circular, with resolution not being peak and climactic but more about going inward, toward depth. I think they write about a feminine story arc as concentric circles. I love it. I am circling around the big questions right now – questions about how to live with acceptance and surrender, how to live my best life given the losses and limitations and gifts and pure luck I’ve been handed.

One of my great blessings is knowing a lot of amazing people. Right now Burke and Lucas and I are fighting back against the City of Seattle’s budget cuts, specifically the way they will affect disabled youth this summer. As I was making email lists, thinking about who we know who would email the city council, I was struck by how many people care deeply about Lucas and our family. (In fact, I keep thinking of people I didn’t send it to. If you haven’t seen our call to action, please let me know and I’ll forward you the email. We are still fighting and need more voices!) I feel lonely sometimes, isolated by care and illness. But man, if I look at the overwhelming number of people I can ask to support our family, I feel rich beyond belief. It’s not a happy ending. But it is true, and while I’m trying to make peace with this moment of feeling low, I am buoyed by turning my attention toward our incredible community.

A few more things that are lifting my spirits right now:

My friend/teacher/writing mentor, Anne Liu Kellor, wrote a beautiful essay about friendship, including the work it takes to make and maintain, and some deep questions about how to build meaningful, close community beyond the nuclear family, called “How to Make Friends During the Apocalypse.”

Both kids. Lucas is deadpan funny; Ida is ridiculous silly funny. This morning she woke up at 5:50 am, but stayed in her room listening to her audiobook until 6:30 am (this, alone, makes me happy), at which point she came into our room and bodyslammed Burke and me and declared that she was drinking (invisible) silly sauce at the world-record-breaking pace of a gallon a minute.

Nurses. We had a nurse leave Lucas’s team in January. In the past, we’ve gone weeks or months with open shifts when a nurse leaves, which puts more work on Burke and I and means Lucas misses school. This time, his two other nurses adjusted their schedules to fill in the open shifts until we had a new nurse on board and fully trained. Today is her first day! So, so, so grateful.

Burke. If you haven’t asked him about his new job (and how we can build progressive and radical grassroots movements while also defeating fascism in 2024), you should! Also, he is still getting me treats, even post chemo, even while I’m still sleeping a lot and he’s doing more of our family’s load of caregiving. Most recently he got me a new, lefty cancer book, All In.

I feel like I should tell you something awful to end this, so I don’t risk having a tyrannically happy ending to this post. But I trust you follow me. There’s not always a happy ending. Anyone (me?) who expects that of cancer is delusional. But also, when things are good, there’s not always another proverbial shoe to drop. Or, maybe more to the point of the proverb, there are a lot more things that will drop (mittens! hats! feather boas!). Maybe I put all those things in a circle and making meaning  out of the mess.

(For reading this far — thank you. Here are some pictures from a month ago, back before I was feeling low, when Ida and I traveled to Joshua Tree. I don’t take a lot of feeling-cancer-depressed pictures, so, you know, it leads to some incongruence between text and image.)

I’m overdue for an update, but, once again, I find I’m not sure what to say at this point in the process. So I’ll give you two versions.

Short version:

My body is doing remarkably well. Recovering from chemo, going for short runs again. My mind is trying to make sense of all of this. I probably don’t have breast cancer any more, and I’m done with chemo, and it sounds like a time to celebrate but still doesn’t feel like it. I still don’t have much hair, but I think I felt it – like a tiny breeze through my tiny hairs – in a way I haven’t in a while. I start my next course of treatment in a week. And I caught myself thinking the other day something like, “I don’t want to be done with cancer because I’ll miss people worrying about me and saying nice things to me.” So, there’s that, too. 🙂

 

Longer version:

Do you know about the hero’s journey? The one where a brave, single character goes through something terrible, and then emerges on the other side with some great wisdom, earned through the treacherous journey to overcoming? I’m a sucker for that narrative, and I resent that I’m not here (here being mid February, here being back to the blog) with some great wisdom. I’m so disoriented, still, by the fact that I have/had cancer. I don’t even know if I lack the great wisdom because I’m not on a hero’s journey, or if it’s because I’m still in the middle of it all.

Maybe my confusion explains my resistance to using the past tense when I talk about cancer. I still haven’t said to anyone, “I had cancer.” I keep doing weird dances with tense, saying “I’ve been going through treatment for cancer,” or “I’m coming through cancer.” But it’s not just a cognitive dance with narrative. Also, it’s just unclear. 

In early October, my wonderfully over-confident surgeon told me that “we probably got all the cancer!” For a moment I felt hopeful. Maybe all the cancer was gone with my breast? But the “probably” was critical. All my treatment turns on the “probably.” It stands in for, we will never know. Wrap your head around that. There is no way to know if the cancer is gone. That is true for everyone, but it is a lot for someone who had a 10 cm cancerous growth that may or may not have spread its mutation out into my body. And since there is no way to know if it spread, I went through chemo.

It’s been five weeks since my last chemo infusion. I feel physically so much better — the kind of better that I’d want to throw a party for. But the cancer rehabilitation doctor says my body certainly isn’t recovered from all I’ve been through, and that I need to take it slower than I have been. And then, with no time for my brain to make stories to make sense of this “journey,” I had an appointment with my oncologist again, and she is talking about opting for the most aggressive injections and pills to suppress the hormones, “in case there are any cancer cells left floating around your body.” I swear she made little wiggly finger movements as she said it, like dancing fireflies. Maybe it was a bad zoom connection and she was just scratching her nose, but I resented it anyway. Even though I knew this was coming, I hate that I went through chemo only to get here — to take hormone suppressants for five to ten years.

Exactly a year ago I read this great article in the NY Times about menopause, and new research about treatment. Go read it, or listen to it. Anyway, I read it and felt so lucky to be nearing perimenopause and menopause with this new information. Hormone replacement therapy (HRT) can be effective, and the likelihood that it causes cancer is so low, and the quality of life benefits so high. Yay! I am of the generation that heard HRT was too risky, but now we have new information. Menopause might be easier for me than women and people with ovaries who have gone through this before me.

And then, crash. I have the most common kind of breast cancer – hormone positive breast cancer. I can’t tell you the science of it yet, but I think of my cancerous mutation as feeding on estrogen and progesterone. These drop naturally in menopause. The HRT puts some of these hormones back in the body, so I can’t do that. In fact, I’m about to do the opposite. Instead of hormone replacement, I’ll be doing hormone blocking therapy. Starting at the end of the month, I’m going to inject and ingest medications that will throw the brakes on my hormones, crashing me into a brick wall of menopause. “Medically induced menopause.” I resent having to take these medications, even though I remind myself they improve my chances of survival. It makes me feel very ungrateful. But if I’m on a hero’s journey, today I’m a whining hero today who just wants an easy way through. 

That said, don’t feel too sorry for me. I am relishing the fact that cancer (plus getting laid off from my job this fall, plus having enough to not be stressed about money – what a wild gift) cleared my schedule, and so I am re-emerging with energy and free time. Some of it I’m using to volunteer. Today it means I get to go chaperone the 3^rd-5^th graders at a school dance! And I’m tentatively joining a gym. The extra time means I’m writing more (I even published a pretty nerdy craft essay in a nerdy journal called Assay about The Undying, a great book about breast cancer.) And it’s allowing me to go away: on a two-night writing retreat with friends in January; to Joshua Tree and Palm Springs with Ida next week for mid-winter break; and to a hot springs in Canada with friends next month. Burke and I are even dreaming of going away overnight for the first time in four years, but we need more nursing hours for that to happen. If you’re still feeling worried about me after reading that luxurious list, please ask the universe to send us a nurse who is willing to work an overnight shift. 

Thanks for reading. I hope that I can return the favor of loving, caring attention to you, too.

 

 

Dear friends,

I keep thinking I should write an update, but I feel like I’ll let you down.

Chemo is over. I feel like I should write that with lots of balloons and exclamation points, like: I made it through!!! But that doesn’t feel like it encapsulates how I feel. I still can’t believe I’m here. That I have/had cancer. I didn’t want to be here in the first place, so it doesn’t feel celebratory like running a marathon or winning at bingo.

But yes. On January 9 when they took the PICC line out of my arm (an intense, straight to the heart sort of IV) and said I was cleared to go home from the hospital’s infusion unit, I was definitely happy to know I wasn’t coming back there. I was happy-ish to know I had just one more chemo-low to make it through that weekend.

But also, I had a terrible cough that was keeping me up at night. I’m learning that with cancer I don’t know what things should worry me (or will worry my doctor). So I report everything to the oncologists, which seems to make them worry. The cough, for instance. They sent me in for chest x-rays, which somehow were unclear, and so they just treated me for pneumonia. I spent the weekend, once again, taking more drugs than I have ever taken at once, maybe even taken over the course of my life. For dramatic effect (or maybe just so I can look back and think, phew, I’m done with that), here’s some of what I took just that post-chemo weekend.

Annie Dillard wrote, “only the newborn in this world are whole, that as adults we are expected to be, and necessarily, somewhat nibbled. It’s par for the course.” (Thanks to Sulieka Jaouad and The Isolation Journal for sharing this quote.) I had to look up the verb “nibbled” used this way. It’s like eroded. I know this is true on a theoretical level. Our bodies are inevitably eroded by the fact of moving through the world, bumping into things, having all of life’s experiences, which includes illness and injury. But somehow I always thought that when these bumps came along, I’d age gracefully. (Short pause so we can all laugh with me/at me. It is so easy to say — “I’ll age gracefully.” It is another thing to look at the liver spots on my hands and love them. To spend so much time when I travel talking to friends about our bowel regimens. To cough a little and be cool with needing a chest x-ray. I moan and complain every time.)

I know it shouldn’t be a surprise to mourn losses in my body, or changes, or adjustments. But man. They’re coming so fast that some days. I think I expected “aging” to come at me a little more gracefully, not so all-at-once. Especially at my lowest during chemo, sometimes I would look at myself in the mirror and not recognize myself. I don’t mean my loss of hair. It’s more that the changes came at such a dizzying pace that sometimes I feel like I don’t even know who I am in this body. It is strange, to look in the mirror and not know the person looking back at you.

I think that intense rate of changes in my body has passed, and for that I am grateful. Now I get a couple more weeks of post-chemo recovery, and then I start a 5-10 year course of more drugs that also aim to prevent recurrence. I want to stomp my feet and say no. I really don’t want any more. But as I say that, I feel like a giant, belligerent toddler refusing to take medicine because it doesn’t taste good. These medicines (tamoxifen, among others) are part of what makes breast cancer so survivable for so many people. I do and don’t want them. I’m lucky to have them.

As I come up for air, I am also feeling so much gratitude for so many things. Among them:

Good, nourishing food, especially soup and sourdough bread this time of year
Our cat, who has snuggled close to me on my hardest days
Our two amazing, goofy kids
All the water, that feels like life, around me in Seattle
And the water birds: the mergansers and the coots and the mallards and the cormorants
Physical therapists, mine and Lucas’s
Burke’s wildly unwavering care, for me and Lucas and Ida
Valley and Mountain (our church) where the music and the people are so amazing
Brave protesters who I hope to join
Instagram live, so I can support or at least watch the civil disobedience as it happens
Zoom and all the people it keeps me close to
Writers and readers and my book club
Having our family and their support, especially time with our kids, nearby
Coffee, especially Lisa’s amazing home-roasted coffee
Seattle’s beautiful and well-stocked public libraries
My body, its resilience, its willingness to keep going despite the poisons
My friends… you all who adapt and hang out and stick with me, with us, and make room and time for us despite/because of our family’s unique needs

A few more pictures, in celebration of some of these great beings…

(One more gratitude/celebration — I was accepted into a writer’s program through the Seattle Public Library, and so I get to use a shared office on the gorgeous 9th floor of the SPL downtown library. Check out my selfie from my new office!)

 

 

 

 

I’m guessing 4 am the day of chemo isn’t the time they recommend blogging, but here I am. Wide awake. Holding the paradox of this moment. The fact that I’m lucky, and I’m not, and I’m lucky, and I’m not. (Also, amped on the steroids I have to take before chemo, which may have also, weirdly, lifted my sour mood.)

I think that sometimes, from the outside, people think that I/we have had terrible health luck. I mean, Lucas has a disability/disease with no treatment or cure. I have cancer in my 40s. Ida has a rare manifestation of muscle disease in a kid with two X chromosomes. (Burke so far: very healthy!) Some days I wish I could wish all the diseases away.

And/but, I know that some of life’s most beautiful moments are contained within and around the difficulty. I look at the people the Lucas has brought into our life, or drawn closer into our family, and I can’t imagine a better life. I feel how deeply close Burke and Ida and I are to Lucas, in part because of his disability, his need for our care, his MTM. And I am grateful. I used to say I wouldn’t wish for another diagnosis, another body, for him. That is changing as he grows and the limitations get bigger — of course I wish his life was easier. That he and we could do more things. But, the paradox. I also feel so lucky to have an upfront seat to witnessing the ways he moves through the world, with all the barriers and limitations, with such ease and grace.

And so, I am up at 4 am the day of my last chemo with such mixed feelings. I do not have that distanced perspective on cancer yet — no big gratitude for this complicated mutation — but I am so aware of how easy I have it. I am almost 47. Despite a big mass of cancer that I had growing in me until late September, I get to live past 50, likely 60 and 70, maybe 80 and 90, all of which is relatively new in human history. I have so many things I look forward to doing in all those years of life.

In the midst of it, though, cancer treatment sucks and I wish I wasn’t here. Last time, on top of all the other side effects, something went wrong at the site of my IV infusion. My arm was swollen, red, and extremely painful for days. Three weeks later, and my right forearm is still tender and my wrist feels like I have carpal tunnel. And so today I have to get a PICC lined inserted before my infusion. It’s a fairly common procedure — I’m sure Lucas had it when he was a baby. But now, the idea of a nurse threading a super thin tube from my arm up to my heart to push the chemo straight in… it doesn’t sound much better than a painful peripheral IV.

More than that, if you’ll listen to me complain, chemo has zapped my energy and I’ve felt down. The grey and dark and wet of January doesn’t help. Chemo slump plus Seattle winter is just a rough combination for my heart. And then I got a cold last week and ugh. I’ve been sleeping a lot, lying around a lot, quick to get mad at Ida when she won’t let me rest, wandering around the house restless and bored because I don’t feel good but don’t feel like resting. It’s been a rough couple weeks, and here I am. I’ve heard that people ring a celebratory bell in the infusion department on their last day of chemo. I don’t feel there yet — it doesn’t yet feel like a celebration, even though that other part of my brain that is reading about the evolutionary history of cancer and knows I’m fortunate to have this treatment. Also, “done with chemo” means I move on to the next phase: 5-10 years of hormone drugs.

In the vein of paradox, I’ll leave you with the things that have been sustaining me (I mean, first friends and family, but they don’t fit in the small space at the end of this blog.) Humor and heartbreak. Reading/watching/holding both the brilliant and ludicrous (shows like Lady Dynamite and Atlanta, which throw the humor right up next to the sadness) and the grief (so many of my books, which of course also make space for the love and hope). And so, I’ll leave you with both. The heartbreak from poet Andrea Gibson, which speaks to me about embracing the hard, about embracing loving and living fully. And the humor thanks to Julian, Dan and Dana and their collection of silliest New Yorker cartoons. This one made me giggle and giggle.

 

It feels like the clouds heard me talking about the solstice, and they dropped down to earth to make the last couple mornings gorgeous and wild and eerie and serene.

Happy/sad/tired/sick/hopeful/dark/stunning winter solstice everyone. I feel so grateful to be alive.

I moved back to the northern latitudes (from San Salvador to NYC) almost two decades ago. At the time, I loved the constant warmth and large daily doses of sunlight of the tropical region, so much so I declared that my move to the U.S. was just a test. I would see if I could live with winter again. It was a few years after that – maybe when I realized I loved Burke so much I wanted to start a family with him and, despite all that drove me bananas about this country, I loved being home in the U.S. – when I started deliberately reflecting on how I could embrace the dark of winter. We threw a winter solstice party once in D.C., and everyone shared things we loved about winter (I still remember Burke describing his joy at riding his bike, fast and down the long hills of D.C., in the crisp, crisp chill). Every winter, my body misses the light, the heat, the ease of running into friends and neighbors without so much planning. I’ve repeated the question over the years to anyone who will listen: how do you embrace the cold and dark of winter?

Tomorrow is my third round of chemo. I am hoping that my slowly evolving embrace of winter will help me also rest and be gentle with myself this round. Because I have tried all sorts of ways to avoid accepting cancer affects me: pretending I could keep teaching yoga (appointments and then surgery recovery and then exhaustion got in the way), pretending I could keep running (it was good for a while, and then it was too much), pretending I would be able to go snow shoeing (by buying waterproof winter boots). This week I tried going for a 4 mile hike in the mountains, and my usually strong heart vehemently said no. Within a minute of leaving the parking lot I had to stop and rest, and eventually I had to try an easier spur, then found that amount of climb was still too hard. My body says NO MOUNTAINS for me right now. It is humbling. (I also really wanted to host a winter solstice party and invite you all over, but I have been falling asleep so early that I talked myself out of it. But if you’re up for it, I’d love to hear how you welcome/embrace/accept the dark and cold?)

One piece of fun news for me and cancer: I submitted a short essay on grief and acceptance (in which I may have overemphasize my acceptance) to Wildfire, a literary journal featuring writing by people who have/have had breast cancer, and they published it! The magazine just came out this week. When I got my diagnosis, I bought two back issues — it was so helpful for me to have short, personal stories and poems that illustrated that vast range of experiences of people with breast cancer under 50 (what a specific subgroup, I know! And yet, there are enough of us to warrant a literary magazine.) The magazine is also beautiful, with great layout and gorgeous photos. If you have or have had breast cancer, I highly recommend it! (I can’t tell you what it’s like to read if you don’t have breast cancer – maybe you’ll love it, too? You probably know someone who has breast cancer – you can buy it and then pass it on?) If you want to read and can support the journal, you can shop here (If you mention my name under “how did you find out about Wildfire” at check out, I get a small portion of the payment. I am learning how little most writers earn for their writing, so props to Wildfire for sharing minimal profits with writers.) My writing is in the issue called “New Normal.” You can use code WILDFIRE15 gets you a 15% discount as my friend or family. And if you don’t feel like reading anything but my essay, let me know and I’ll email it to you.

I’ll close coming back to winter. In “Love Letter to A Season I Never Loved When I Was Young,” Margaret Renkl writes, “I can find such irritants entirely demoralizing, but in winter I am filled with tenderness for the foolish and the broken, for the contours of this tired land. Darkness falls early now, but I don’t fight it. Late in the day, before my husband gets home, I sit with my book and my dog, and I treasure the quiet. The earth is resting, and I am in need of rest, too. In winter, I feel at home in the silences of the world.” I, too, am in need of rest. And I, too, am working on finding tenderness for the foolish and the broken, especially when that is me.

(photos by me — from a mid-winter meditation retreat in northern CA in 2018; a sunrise over Lake Washington along my regular running-now-walking route on Friday; and the coots, lake birds I love who come to Seattle for the winter.)

Short but sweet update. There is good news in our house!

1. I got through chemo slump number 2. I even went running and did some more active yoga last week, which feels good even if it’s in starts and stops. Even if I look less than graceful. I don’t recommend suddenly moving around in the world one-breasted and hairless if you don’t have to… but I’ve found some freedom in it. Who CARES if I don’t look great running?! I have cancer and I’m SORT OF RUNNING for God’s sake.
2. More importantly, Lucas is doing better!! The wheelchair repair person came on Tuesday, made a minor fix that I thought couldn’t possibly be enough to change things dramatically… but I was wrong. Lucas went from being able to sit up (which is where he can do most things, like leave the house, go to school, etc.) for 10 minutes without discomfort to hours and hours. It is phenomenally exciting. He still has healing to do — we’re not even four week post-op yet — but this opens up so many more possibilities for the coming weeks. Including him going to school, going for walks, writing, getting on zoom calls with friends and family, and even (at Ida’s cajoling) going to get a picture taken with Santa.

This is not in the category of good news, but my worst chemo side effect right now is that my head is so, so itchy. I just mention it in case you’ve been through chemo and figured out a fix. It is almost unbearable at times. I’ve tried three different medicated ointments, hot and cold cloths. Last night I broke open an aloe leaf and rubbed it on my poor, itchy head. I’ll live, but if you have tips, let me know.

Lucas’s sleep hasn’t been great since surgery, but he feel asleep enough before we did that Burke and I got to watch a movie this weekend. We watched American Symphony. It’s about Jon Batiste — his brilliance as a musician, his heart and humanity, and his relationship with his wife, Suleika Jaouad and her treatment for leukemia. I knew that not all cancer is the same, but man. What I’m dealing with is not even in the same solar system as leukemia and some other forms of cancer. Anyway, it’s a gorgeous documentary. It’s on Netflix. Borrow someone’s password if you need to.

Dear friends,

I don’t know what to write about with an update. I had chemo on Tuesday (that’s five days ago). Since then I have felt

• • grateful
  • angry
  • hopeless
  • exhausted
  • pained
  • happy
  • train-wreck-sized fatigued
  • lonely
  • lucky
  • and all of it, sometimes, all at once

Going through my relatively short round of chemo is awful. I am exhausted. Basic tasks wear me out. Disabled and chronically ill people use “spoons” to talk about quanitifying the energy one has to get through the day. It’s a way of naming the need to be economical with movement and activities, knowing that basic activities of daily living can be so hard. I, for this brief chemo moment, feel so much solidarity with people who are exhausted just by living in and tending to an ailing body.

But also, when I’m not at my chemo lowest (I’m coming out the other side now, which is how I have the spoons to write), I feel hopeful again that I’ll be strong on the other side of this. I live in the double consciousness of being mad and how shitty I feel and also aware of how much easier I have it than most. I only have to do four rounds of chemo — I am almost ashamed, facing a friend who has more than twice that ahead of her. Neither of us deserve this, but I certainly don’t deserve a shorter, easier path. And I’m grateful for access to great doctors, and the internet, and a computer with which I reach out to them on the regular, check my labs, ask more questions. We bought a new bed when I got my diagnosis, and I love my very comfortable bed. 

I’ve been thinking about my grandmother, who had breast cancer in her 70s. I still need to check in with family — I was a kid and not paying attention then — but I think she endured a mastectomy and chemo, too. If I’m knocked out to the point of hopelessness, how do elders make it through this? It reminds me to be grateful for my, still, relatively healthy body and resilience.

And I’m grateful to still love food. Chemo messes with your mouth and gut. All that epithelial lining, those wiggling tentacles that digest and move food through the length of our guts, they are susceptible to the chemo poison, too. Most people feel nauseous with chemo. My gut has slowed down, but not my appetite. People bring us steaming dishes of very good food. But I am devouring all the food like I’m starving. Like I haven’t eaten in days. I imagine my gut-brain feels the existential threat of cancer and has responded like Cookie Monster. MUST EAT, my body says. And the food is so, so good. 

It’s hard to write about loneliness. But cancer plus intense caregiving makes it so, sometimes, I feel like I’ll never again have a life outside of self-injections, chemo drips and Lucas’s increased care needs. Obviously that’s not true, but you know, feelings. Cancer plus intense caregiving can feel like living in a parallel universe, where I can see but can’t touch the life everyone else is living. I am overwhelmed with love and appreciation for Burke, Lucas, and Ida. I couldn’t ask for a better family. And it is impossible for any three people, no matter how great they are, to be everything for anyone. My heart needs to feel like we aren’t alone in this, even when we have to do so much of it alone. And so, I think, I am writing a simultaneous plea and a thank you. The texts, hugs, treats, emails, care packages, cards, offers to take Ida, to bring food, to send playlists, podcast, the offers of rides, grocery runs, walks, calls, poems… Sometimes these aren’t even the things we need, and sometimes I can’t even respond, but all of it bolsters me. Thank you, thank you, thank you. And please. 

I haven’t written here because I think of this as the place I write about cancer, and I haven’t really had space or time to think about cancer. The “third day” did hit after the first round of chemo, and it was rough. I moaned and walked around our house like a broken person and it felt almost unbearable for a couple days. Then, like a Christmas miracle, the chemo-induced lethargy, aches and pains lifted just in time for Lucas’s surgery. 

Since then, we have been so focused on Lucas’s care that cancer has receded to far-back-burner. Which might sound like a good thing, but I miss being able to think about anything other than how (and if) Lucas will recover. Right now he has strange pains that seem to puzzle even his surgeon. My wonderfully active prefrontal cortex (the part of the brain that can go foggy with chemo) says that the weird pain is probably just part of his healing process. My reptilian brain, the part alert for danger, fears we traded in one set of (known) pains for a new set of (unknown = scarier) pains. I haven’t been able to look up from entertaining him, caring for him, or worrying about the future of caring for him. And now I have chemo again tomorrow.

I hate how scared I can get for our future. I treasure the time I spend with Lucas, whether it is caring for him through tending to his body or playing games or reading books together. Lucas is an  amazing human. I feel so lucky to be so close to him. But also, his care is so insular and specific, and therefore, when he needs more care, I feel (or fear) ourselves becoming more and more isolated. Cancer still feels easy in comparison. I now know that chemo knocks me down Friday-Sunday after my drip. That feels easy. (I mean, easy because Burke is so on top of Lucas’s care, all the time, but especially now. Easy because so many people are helping keep Ida entertained when we can’t. I love how big she is feeling our community of support right now.)

I listened to a great podcast with Sarah Hendren, a designer and mom to a grown son with Downs Syndrome. She beautifully articulates so much about disability and our collective choices, particularly design choices that help or hinder access. But the thing that she said that really struck me was this: We talk about “interdependence” and “mutual aid,” really focusing on the ways that we give to each other in exchange. But if we’re honest, sometimes we are just dependent. One person, dependent on another human for care. And this scares the shit out of most of us (maybe particularly non-disabled people). What if we admitted that through injury, illness or age, all of our bodies will depend on others at some time? It is scary because we know that people and systems can let us down. It is overwhleming because of the weight of it — we need each other so desperately sometimes. I am feeling the weight of this right now. Lucas’s deep dependence on us and his nurses. Lucas’s and my dependence on hospitals, doctors, nurses and medical assistants right now. It feels vulnerable to be so dependent. And it feels heavy, to be so utterly depended upon.

My hair feels like small news in comparison, but since it marks such a clear initiation into cancer-journey-land, here is that update. It started falling out last week. I had already been dreaming of it falling out in weird, almost deranged dreams where I pull out hair by the handful. So when Burke shave my head on Tuesday, I was relieved to have it done. I have mixed feelings about how it looks and feels — it isn’t totally unfamiliar, since I also shaved my head – then for fun/liberation/feminism/non-attachment – seventeen years ago, back when we lived in NYC. In fact, Burke shaved it for me then, too. I hope it makes me look more punk rock than cancer-sufferer…we’ll see. It is still falling out, but now my arm hair, leg hair, eye lashes and head hair is all about the same length, so I can’t tell which hairs litter the bottom of the bathtub each time I shower.