All the turmoil in the world and in my body has me asking again and again: What can I do? What in the world can I do to make it stop, or fix it, or support others who are hurt?
It’s probably no surprise that I’ve been spending more time on Substack lately since stepping away from other social media platforms, and this post caught my attention, so I had to add to it:
The uncertainty.
It always comes back to the uncertainty. Can we be ok with it? Will accepting the uncertainty make everything more bearable?
I used to think so. I used to be sure that I could adapt to whatever came my way. One of my favorite bits from the poem The Waking by Theodore Roethke goes:
This shaking keeps me steady. I should know. What falls away is always. And is near. I wake to sleep and take my waking slow. I learn by going where I have to go.
I would repeat these lines to myself when in my village in West Africa, stunned by my decision to live in a country where my do-gooder desire to “change the world” met with reality. I repeated the lines after my first big heartbreak when the guy I had moved to London to be with broke up with me and I was left living in a massive city where I didn’t know anyone. I repeated the lines when I fell in love with thru-hiking and didn’t know how to make that transformative experience last.
But somehow, the shaking this past year has me reeling in a way that I haven’t experienced before. I’ve discovered that I can’t tough it out, muscle through it, or ignore it like I might have done in other situations. BUT I have experienced something this past week that helps: genuine human connection.
My blog post last week was filled with uncertainty about my body, about what was going wrong, about trusting myself to understand the pain, and get to the root cause of it all. But when I uploaded the post and made doubts and fears public, what I did was let others see my vulnerability (scary!), and several of you responded in ways that helped me tremendously. I felt seen. I felt understood. I was taken seriously.
And I think that is the answer.
For all the problems with the healthcare system (and the world), a simple fact remains that a small group of people who are willing to listen to you, hear you, and genuinely want to help, can have a profound effect.
What happened? On Friday my physical therapist assured me that she would help me find the right kind of help. On Tuesday a former trail work volunteer of mine, who is also a retired physiatrist, took a look at my scan and assured me that help was possible. Throughout the week many of you responded with things that have helped you through similar situations of self-doubt and uncertainty. I feel seen, and know that care and connection is one of the most beautiful, human, and inspiring things you can do for another person.
What is the point of this life if we don’t try to alleviate the suffering of those around us? Can helping to alleviate suffering be the answer to all of it?
I think the real power is taking it one step further: what if we all actively worked to bring out the best in other people?
I’m a member of a creative freelancing group. We meet every other week on zoom and share struggles and tips for how to navigate the life of a creative freelancer. I’m still taking part even though I haven’t been working since my cancer diagnosis because the ladies are awesome. One of the items we’ve been designing for ourselves this year is a creativity bingo card (google it! you will find a ton of interesting results). I put one together with things on it like: buy myself flowers, go to coffee with someone new, and move at least 10 minutes every day. But the one that has blown everything out of the water so far has been: do acts of random kindness.
I was getting a coffee from a local place this week, and noticed a lovely tattoo on the barista’s arm. I complimented her on it, and her response was a beautiful smile that literally beamed back at me. As I was waiting for the coffee, I turned to see a man at one of the tables wearing a shiny gold puffy coat. I told him I loved it, and that the sun filtering through the window on it brightened the place up. And he beamed! He started talking and couldn’t get the words out fast enough because I had shown interest in him. It was an amazing experience, and I walked away thinking this is it! We need to see people, acknowledge them, listen to them, recognize their humanity, and in doing so, we can start to bring out the best in people.
On that vein, I have a show recommendation for all of you: Queer Eye. It will restore your faith in humanity. I promise. (Season 10 just dropped!) Every time I feel depressed, I put on an episode, usually cry a bit, and feel immensely better. The fab five really do bring the best out in people.
So I’m going continue with random acts of kindness, even when I fill my bingo card, and try to really see people, and try to bring the best out in those around me.
I finally had an appointment with my oncologist to go over all the great test results from the weeks before, but when I described the increasing pain I had been experiencing for months now (8-10 seconds after I stand up, a throbbing pain pulses through my lower skull and shoulders and lasts 5-10 seconds….often I have to close my eyes and grimace to get through it), she discounted my working theory that it had something to do with low blood pressure.
Frowning at my description, she said, “Lets order a cervical spine MRI to see if something else is going on.” I was relieved that she took the pain seriously and wanted to help me figure out what was going on.
I don’t have cancer right now, but something is going on that doesn’t seem right.
I had gone to yoga that morning, modifying greatly as I do lately, but after meeting with her, decided that I would minimize extraneous movements in my neck for now. The MRI was scheduled for Friday morning, and I had my surgeon follow up on Tuesday. I was going to get some answers.
Wednesday, January 14
I walked to my acupuncture appointment in the balmy 50-degree weather that had been plaguing Central Oregon this June-uary. Kym found my neck to be incredibly tight, but my shoulders were the most relaxed she had encountered during the year I had been visiting her. Hmmm, strange, I thought.
I reiterated my complaint of throbbing pain in the lower half of my skull and shoulders when I stood up, the same thing I told my oncologist on Monday, and that a neck MRI had been ordered. While I was resting with her needles tapped into my muscles and meridians, Kym consulted a physical therapist in her office and came back with the suggestion to tuck my chin into my chest when standing up, using only my legs. I practiced the movement and was delighted to feel less pain upon standing. The theory was that something in my neck was getting pinched when I was standing up, causing the pain. I walked home, and every time I stood up the rest of the day tucked my chin into my chest.
Ok, so what was causing the pinching?
Thursday, January 15
I was up in the wee morning hours again. This time it wasn’t the steroids that woke me up like last year during my chemo treatments; this time I was worried about my neck. I woke up and couldn’t get my sore neck off my mind. I had additionally started to feel a “pulling” on the back left side of my skull. It felt like things were progressing.
I kept replaying that week’s appointments and pain in my head in an infinite loop when I finally decided to get out of bed. I put on an episode of Poledark, a show both my mom and I had been watching on Netflix.
One particular scene and line stood out, and I rewound the episode enough times to write it all down:
You can not fight all the world. You can only make your own small corner a fairer place.
We are living in such a tumultuous time, I was living in such a tumultuous body, that I found real solace in that passage.
We can only do what we can do in our small corner of the world.
It’s easy to throw up our hands in despair when we see things on a world scale. That shared story has been true always and everywhere. It really doesn’t matter if it is the 1790s mining communities of Cornwall, or today in the streets of Minneapolis. We have to do what we can do in our corners. I was happily ruminating on that line and its implications when suddenly the potential of my situation hit me like a ton of bricks.
My body was trying to tell me something and I hadn’t been listening. It’s time to put my neck brace back on.
My brain had been playing doctor’s appointments over and over in my head, I kept focusing on my pain and the really tight and sore neck, not seeing the trees for the forest. I even had the audacity to tell a few people that I didn’t trust my body anymore…it didn’t know acceptable pain from damaging pain. I didn’t have cancer so why is my neck pain increasing?
Duh!
My neck pain was increasing because something was wrong in my neck.
My neck muscles were sore from trying to stabilize the bowling ball that was my head.
The pulling feeling in my skull had to be related from my body trying to stablize itself.
I had started to move my body instead of my head when looking to cross the street.
I had ordered a $90 “Level 5” CBD pain ointment for my neck and shoulders.
When I let my brain catch up to what my body had been telling me the last month, and I admitted to myself that something was very wrong in my neck, I was devastated.
I heard Kirk’s 4am alarm go off, and went into the bedroom sobbing so hard that he jumped from the bed in alarm. I pointed to the closet and was finally able to eke out the words “I need to wear my brace again, it’s in the closet.”
Something was wrong.
I was convinced my condition could be an emergency, so I messaged my surgeon to give him a heads up on my symptoms and to prepare him for the MRI coming in the morning. I also mentioned we had planned to drive to the coast for a friend’s birthday weekend, but I could cancel the trip if my neck was too vulnerable.
I didn’t hear back from the doctor that day, but the neck brace and pain meds were helping tremendously. I felt safer. The muscles that had been working overtime were able to relax, and I took my pills without wondering if I should.
My concerns were legitimate.
Friday, January 16
Thank goodness my MRI was at 6:55am. I didn’t have to wait long, and once I was in the machine surrounded by the clicking and buzzing, I almost relaxed.
Something was being done.
I expressed my sense of urgency to the MRI tech. Last time I felt this way I had been wisked away to the emergency room and surgery. She assured me if it was an emergency someone would get in touch.
I went home in a strange calm.
The My Chart results came in an hour later.
It sounded bad, real bad, and I couldn’t decipher most of it. Parts of my spine were mentioned that had never been mentioned before. “Severly compressed vertebral body fracture,” was a phrase I knew, but the severely part was new. A “mildly compressed vertebral body fracture” in a completely new part of the spine was recorded, my pain was likely due to a “degenerative marrow edema,” and other “scattered degenerative findings” told me one thing: my spine is crumbling.
I waited for a doctor’s call, but none came.
I slowly packed and prepared to head to the coast. During the drive I kept my phone close, but no call came. By 5pm on Friday night I decided I wouldn’t be getting a call, and I’d need to wait until my appointment with the surgeon on Tuesday afternoon.
The Weekend
I kept the pain meds on deck, and let myself experience the joy of fabulous company in a beautiful part of the world. Oh, and I ate a cheeto for the first time in a year! And a strawberry starburst! I wasn’t fighting cancer at the moment, so I let my guard down and ate some food because why not! My spine is collapsing!
The pain and throbbing continued, but as long as I wore my brace and took my pills, It was manageable and I was able to keep the demons at bay.
We walked on the beach, ordered pizza, put puzzles together, ate birthday cake, watched football, and walked on the beach some more. It was perfect.
On Monday morning I realized the “pulling” I had described at the back of my skull was really a spasm that was by this point, throbbing rhythmically at the back of my head. If I took pain meds the spasming stopped, so I kept on a steady regimine of drugs.
And this was it. This was the moment to put the “live now” blathering into action. If I was faced with a crumbling spine, which probably meant surgery, radiation, or some other combo of hospitals and extended bed rest, then I was going to have this day with the people I love and only focus on what was in front of me. That morning, it was a marionberry scone and delight at the jelly fish we found washed up on the beach. It was walking with the love of my life, my heart bursting with joy at spending the weekend with Brooke, Adryon, and Alex (Brooke’s brother).
I would die happy if today was my last day.
Tuesday, January 20
I was calm.
I woke, drank coffee, and made plans with Kirk to go to the surgeon’s appointment together later in the day. I slid into an easy morning.
I would have answers today. There was no reason to fear.
I had a phone interview with a woman working on a story about the Blue Mountains Trail, had a zoom with my creatives freelancing group, and heated up leftover curry for lunch while I watched more Poledark.
I started to get a little agitated when we got in the car to head to the hospital. I surveyed the clock to make sure we would get there on time…or early, I do like to be early. And by the time we walked into the waiting room my name was being called.
Yes!
Kirk and I sat waiting for the doctor to arrive and I surveyed the graphic of a spine on the wall. Ok, now my T3 was collapsing. The T3 supports upper body movement and respiratory function, and affects the lungs and upper chest.
Ok, got it.
The doctor came in, noted my c-collar, and I explained that I feel more comfortable with it on. I go over what I’ve been feeling, and he takes a big breath and explains that my spine looks stable in the imaging. I stammer, “But more vertebrae are collapsing, I feel like it’s crumbling.” He assured me I am not crumbling, and says again, “Everything looks stable, it looks really good in fact.” I look at Kirk in disbelief. “But, the pain?” Somehow, he doesn’t address the pain and the head and shoulder throbbing, and the skull spasms, other than to say nothing is wrong in the imaging.
It’s a short appointment. We walked out of there completely bewildered. “But!” I start again and again, “That doesn’t make sense!!”
I’m suddenly questioning everything.
Am I really feeling pain?
Is it all in my head?
But the My Chart results sounded so bad!
Even my oncologist said they looked bad, but she isn’t a spine specialist.
Am I making it up?
But what about the pain?
We drive in silence to Deschutes Brewery. I took off my neck brace. We walked in and ordered some food.
I’ll get a second opinion.
Maybe it’s not related to my spine.
Something must be wrong.
Maybe nothing is wrong?
But the pain? Is that real? I know it’s real!
I text my mom and some friends who were in the know. I hadn’t wanted to blog about my situation for this very scenario: maybe nothing was wrong. Maybe I was wrong.
This experience had been a week-long mindgame. I was convinced I was crumbling, then told I wasn’t crumbling.
What the %$##^$$#%!
Wednesday, January 21
Ok, maybe it isn’t my spine that is the problem
Google, what do you have to say about it?
I spent some time going through the MRI results, copying and pasting each finding into the search bar to decode the medicalese.
The plain truth of terms like “new sclerosis of the left C4 articular pillar” became much more innocuous when worded as “new hardening and increased density in the bone of the left C4 vertebra’s facet joint, usually a sign of osteoarthritis or wear-and-tear degeneration in the neck. It causes potential pain, stiffness, and reduced movement, and can be managed with conservative care like PT, anti-inflammatories, or sometimes injections.”
“Degenerative marrow edema,” became “fluid buildup in the bone marrow, often from degenerative joint diseases that causes pain, swelling, and restricted movement. It is treated with rest, anti-inflammatory drugs, physical therapy, and sometimes core decompression for severe cases, typically resolving over months.”
“Scattered degenerative findings in the cervical spine without thecal sac stenosis,” is “common, age-related wear and tear in your neck, but this wear is not compressing the main spinal canal where the spinal cord sits. This is a very common MRI finding, particularly in individuals over age 40, and often represents the normal aging process of the spine.”
Well shit.
Should I have googled all of this before letting my mind go hay-wire? Should My Chart results be shared without a doctor’s interpretation? Should I still get a second opinion?
In the last week, I had a PET Scan that surveyed my neck down for cancer, a Brain MRI to look for changes from my last scan, and lab work. And they were clear! Clear of cancer I mean. There are still tumors (masses of dead cells), there is still damage to my spine, and there is still abnormal labwork, but it’s abnormal in the ways it has been abnormal for the last year, so in essence, normal for me.
Am I relieved? Of course! So relieved!
Am I back to my optimistic, positive, pollyanna self? Well…I seem to need to sit with this news for a while, and it’s not like you just bounce back from thinking the cancer is growing again…there is the whole “well, why has my pain been increasing” question. And I have to accept that there will always be pain, that managing it is my new reality, and that some of it could have been stress-related from the PTSD over the last year.
So friends, all this means I have another 6-month lease on life!
So, I pulled the trigger on some more trips. In fact, there are still a few openings for a yoga and writing retreat in March with Anish if any of you are interested.
I had intended to write this post yesterday after all the test results had come in, but it turns out I needed a day.
I woke up like normal, drank my coffee with mushroom powders, and picked up and finished The Word for the World is Forest by Ursula K. Le Guin. When looking for the next book to read, I surveyed the shelves filled with cancer-related books, and just had to stop.
So if I’m not going to die yet of cancer yet, I’m going to go read about cancer and dying? No. Not today.
Cancer just hijacks your life. Especially with the chronic pain I’m experiencing now, well into remission. There is not a day that I’m not reminded that I could die soon, or not. Could be 1 year, maybe 5, maybe even 15! Good luck NOT thinking about that every day.
I needed a day to marinate in it, and I gave myself a 100% unstructured, uncommitted day yesterday, where I only tried to ride the wave of existence, knowing I don’t have an active cancer, and If that doesn’t elicit joy, then what are we even doing here?
I took a walk. This week I haven’t been doing yoga, in fact, I haven’t done yoga in about a month…the fears and all, but I have been going on walks: early morning walks before the sun is even up. I talk walks in the icy morning, stepping gingerly down the road with my yak tracks on, knowing my spine is like a pretzel stick, brittle and prone to breaking when it falls to the floor.
Yesterday I went walking just after sunrise and was rewarded with light and color. It was one of the first days in Bend with a dusting of snow on the ground, and even though the paths were treacherous with ice, it was so worth it to have those views and that reframe. The day before, darkness; today, I was walking out of the dark.
Can I surf the roller coaster of emotions instead of sink into them?
Ride the wave of being alive today.
Ride the wave of being alive today.
Ride the wave of being alive today. Became my mantra as I gingerly walked the world awake.
Ride the wave of being alive today.
What will 2026 look like now? I have decided I need some more structure to my days, and the many groups that I’ve joined will help in that: writing groups, book clubs, creative freelancing groups, and cancer survivor groups. A renewed commitment to adding more structure to my days may help erect some scaffolding and assist in giving me a way to pull myself out of the listlessness that was December. Periods of time where I explore deep ideas and read a lot. And I’ll continue taking walks, lots of walks. Reading, walking, thinking, writing; I’m kind of designing the perfect life. I can’t adventure as much, but I’m living a version of my life that’s pretty good right now. I know challenging and scary things are around the corner, ready to jump out at me and knock me down. (That goes for all of us. The world is just plain SCARY right now!) But today I’m standing and walking in the light.
For our final 2026 Speaker Series we welcome back a previous speaker, local triple crown thru-hiker Renee “She-ra” Patrick. In late 2024, Renee was diagnosed with advanced cancer that left her in a wheelchair and unable to carry a backpack due to extensive neck and spine damage. Now in remission and walking again, Renee is exploring how to continue hiking and adventuring in a body that has dramatically changed. She successfully completed a 170-mile hike of the Portuguese Camino by using a luggage transport service, and continues to investigate alternative forms of travel so she can continue to find solace and connection in the outdoors.
Join us to re-connect with Renee and explore a topic that so many of us can relate to in our own way, what it looks like to adventure when our body changes.
How am I doing? Let’s see. It’s the last day of 2025. It’s the eve-eve of my next PET scan, or the first PET scan since my cancer has been in remission. I’m not doing well. In a way, my remission has been haunting me, especially fiercely the past month or so.
I’ve been dismal and down in this season of laughter and joy, but I’ve been high too…these emotions rollercoaster through me, sometimes on an hourly basis, where I can be delighted and hopeful, followed by a deep sorrow that drips off me and weighs my body in heaviness.
Ask me to my face, and yes, I’m doing fine, “Grateful to be here!” I reply cheerfully. To a few, I’ll say, “I’m struggling,” like when Kirk comes home to find me in tears and just enfolds me in a big hug. To myself, I say, “What is the point?” I’m finding this listlessness is manifesting in me forgetting to take my meds. I’ll have breakfast or lunch and then realize two hours later that my pillbox is still full. I hurriedly eat a handful of nuts or a spoonful of peanut butter to soften the landing of the gel caps on my stomach lining.
I am haunted. Haunted by what these next few scans will reveal.
If the scans show there are no new growths, then I have to accept that the increasing pain and discomfort I’ve been feeling over the last month is either in my imagination or my body still coming to terms with being irreparably damaged.
If the scans show there are new growths, maybe it’s a relief? Then these next months will be a series of appointments, and I don’t need to think too much. I will just need to go with it and renew my low-sugar, low-processed food habits.
It’s like I’m just now figuring out how to live with this disease, and it’s not going smoothly. I know all the tricks and tools: go for a walk, get coffee with a friend, read a book, go to yoga, tell Kirk and my closest friends the truth, take a bath. And it all works, for a short while. It pulls me up and out of the funk, but now it seems my default state is in the muck when before it was in the air, floating on thermals above the fray.
And there has been joy….really, there has been – islands of happiness, or just plain contentedness.
Christmas with my mom and brother.
Dan and I walking along the Lake Martin swamp where we saw a huge gator sunning himself on a log.
Brooke and Adryon meeting us for dinner and my first sip of a Red Chair beer in a few years.
Carrie giving me a make-over.
Marina having us over for quiche and cheesecake.
Cross country skiing again.
Kirk bought me new cross-country skis with metal edges for Christmas. They are quite a luxury as I have only ever owned garage-sale skis from decades past. We took them out to our favorite snow park the day after I got home from Louisiana; the sun on my face, and the quiet swooshing of the skis in the tracks were a balm to my overthinking brain.
Before we left the parking lot, I couldn’t seem to remember how my ski boots worked. It had only been two years since I had skied last, but it was like I had never worn these boots before. Turns out I had grabbed Kirk’s boots, which I had in fact, never worn before. Ha! I can still laugh at myself. The skiing was good, until it wasn’t. It turns out that I can’t use my left pole, and I can’t go uphill. The pressure of the poles, especially when trying to climb anything, hurts my left shoulder too much. In fact, four days after the last ski, my neck and shoulders are so sore that I’m taking daily pain meds again. Is this cancer? Or is this skiing for the first time in two years?
Keep going. I just have to tell myself to keep going.
Maybe the pressure valve that is questioning my damaged body will be released after these next scans, and then I can keep going. I have a number of things I want to do in the new year, but am waiting for these scans to make any plans… I want to be grateful, but I am not sure how to feel most days. Sometimes my morning walk will be enough to trick my brain into being hopeful, and I come home and make my smoothie of broccoli sprouts, spinach, ginger root, flax, chia, hemp seeds, nuts, and strawberries, but sometimes the hope masks itself in feeling normal and takes me to the bakery where I stand in line for something sweet.
I investigate other hiking options: llamas! I could hike with llamas! Or do a car-supported hike, as many people do on long trails when they meet friends or family at road crossings, the car filled with camping gear, water, and food. Or I could do another Camino – I’ve already started outlining what the Camino Ingles would look like. Or tap the friends who said the would sherpa for me. Oh, and then there are the carts. I asked Reddit about hiking with carts, and after a lot of “you’re stupid for asking that question,” I got a few helpful replies, but ultimately I think carts work best on pavement, and that’s not the kind of hiking I’m hoping to do right now.
Is this clinging to hiking an unwillingness to give up the last 24 years of my life when hiking was my all and everything? Probably. I was one of those lucky few who found what lit them up inside, who found what I wanted to do for the rest of my life, who found true freedom and purpose in a life lived on trail. I’m not quite willing to give that up, which may be, or probably is, at the root of my despair.
There are many disabled folks who continue to hike: Bill Irwin hiked blind. Wheelchair Bob is out on the PCT all the time, and a local friend, Geoff Babb, even invented the Advenchair, an all-terrain wheelchair, so he could still get around after his stroke. Hiking with a disability takes more time and more effort, but it’s possible. It’s possible. It’s possible.
Oh, the effort though. I’m getting caught up in the effort of doing all the “right” things to help mitigate my body feeling like a 500-pound elephant sinking into the sea. A part of me knows I will get through this, and may even return to my resting disposition in the clouds. A part of me knows letting myself feel the feelings may be the only way through, and a part of me needs to keep finding the effort that leads to small joys.
This isn’t a cry for help, I’ve done that already. This is an effort to be real with you about those “How am I doing?” questions.
I guess the next update will be in the aftermath of my PET scan, brain MRI, and labs. I’ll be a completely different person then.
Finding joy on the PCT was part of why I kept hiking and made it my career.
Maybe I’ve been going about this year all wrong. Ok, I’m going to backtrack a bit…I don’t think I’ve done it all wrong, there have been a lot of beautiful moments, like when Amber opened up her house to us to have an exuberant birthday party with about fifty wonderful souls who rallied around me even when I spent the day puking. Like when Kirk and I went snorkeling in warm Gulf waters this May, or when I finished the Camino in Spain with two new friends. Is it this book project that’s tethering me to the pain of the year? What if I let that thread go for a while? What if I let the scab grow, which might be faster to do if I’m not picking at it all the time by trying to write too soon?
I’m going to choose joy for a while and see where that leads me.
And yes, that still involves writing, surprise!
Yesterday, I was working through an exercise from Ursula K. Le Guin’s Steering the Craft book, the one about reading your work aloud and having fun with the sound and play of words, and something blossomed inside. I was writing around a scene on one of my hikes, a day filled with laughter and play, and I kept returning to that story again and again over the day. I wanted to be in it. I wanted to keep that scene fresh in my mind because the feeling was so different than writing about how my radiation has made my lower back perpetually painful and tight, or how a different approach to the tumors that surrounded my brain could have left me with memory loss or cognition problems. I want to think about something else for a while.
The hangover from that joy has been growing. I decided shortly after writing that exercise that I wouldn’t feel guilty about having christmas cookies for breakfast. I did eat a few nuts so that I got the protein that I need while taking my morning medications, but I ate cookies. I ate cookies dipped in whipped cream and I didn’t feel guilty about it at all! I decided to take the rest of the year off from guilt as well. If life is indeed short, what would it feel like to search for and create joy while saying goodbye to guilt?
Anyone want to give it a try with me?
Let’s make this a fun experiment…because that’s what I like to do! Let me know how it goes for you: the seeking joy and forgetting guilt for a while part. Perhaps in this next phase of trying to figure out who I am now, I will write about how my experiment is going, and also tell some stories from some of your experiments. When I worked at the publishing company for four years, that time was primarily filled with writing profiles on artists and businesses around town. It wasn’t quite journalism; it was finding what was interesting, compelling, and unique about these community members and sharing that through my writing. What if we do some of that with these stories?
I’m posting this over at Substack as well where commenting is easier.All my posts are FREE. Just click ‘none’ on the subscription options.
In happier times…just a few days ago in fact! At the ONDA Christmas party with Phyllisand Mary, two amazing women.
I’m so tired. Maybe it’s the ghost of the impending anniversaries from December 2024 and learning the truth about my injuries, but what’s my excuse this year? I’m discombobulated. I’m depressed. I’m in pain, and I’m grieving for something. I think it’s for who I used to be.
Yesterday I sunk into the depths of a dispair that I didn’t know existed, but today I woke up determined to have a better day. That looks like standing up without bracing for the rushing pain of low blood pressure in my head and shoulders, and instead slowly moving through it, anticipating the other side of the dizzyness, not getting derailed by the dizziness. That looks like leaving the house to write at a coffee shop where I can type these sentences with the accountability of being a human in public.
I don’t yet have the words to explain why I dip into these deep chasms of weeping, but when I try to understand, when I type out the sentiment behind the feeling, I can at least distance myself from it enough to see it a bit more objectively. That perspective takes on more weight as I circle around and around the idea of writing a book about my cancer experience. “Write from the scar, not the wound,” author Cheri Kephart said in her workshop, and that makes sense for a book. My book will be written from the scar, but this blog is written from the wound. From the bloody front lines of a life torn apart and knitting itself back together. At times I think I’m healing and toughing up, but yesterday reveals that I’m still raw and bleeding. The wound is tender and sore.
Bits from this blog may end up in the book, but I imagine the book will look back on this experience from a larger scale (hello fractal, my old friend). It will be putting all the pieces back together as a work of art, with thought and craft and structure… but now I’m still discovering what the pieces are, and what shapes they take. Writing here is sometimes messy, unshaped, uneven, and scattered, but it’s helping me find the pieces far faster than if I were stewing in this malaise and pain without getting it out into the open and letting it breathe. Writing from the wound is completely appropriate to this phase where I’m trying to make sense of what it means to almost die, to get a second chance at life, to confront my limitations in this new body, all within the context of losing my Dad just a few months ago.
Saw this on Substack and thought it appropriate, is depressed almost the same as stressed? In dessert speak, that is.
In a way, remission has been harder than treatment. At least during the treatment phase, I had a reason for being tired all the time, I had an excuse for staying in bed and not answering my emails. But after? Maybe it’s the scanxiety (the anxiety of the cancer coming back…all to be revealed in my next scans in early January, and every three months after…for the rest of my life) or it could be PTSD from my close brush with death a year ago. Or maybe there is no reason, and it’s just one big pile of shit that threatens to suffocate me each day.
Some days I don’t feel better, and wonder, is this the new normal? Now I’m starting to understand why people give up, why they don’t want to be alive with cancer anymore. But just thinking that thought scares me into thinking that thought will invite it back. If our minds are that powerful, can thinking about it coming back open the door? (proceeds to tear hair out)
Writing here has been such a lifeline; that’s a reason not to tear my hair out. Fun fact: my hair was thinning during the chemo process, but now it’s growing back, and in certain mirrors I catch a glimpse of myself with 2 inch hairs standing up from my part line; it does make me giggle (actually, you can see it in the photo above!). Through writing, I’ve been in conversation with myself and with you, and these connections have been everything. I’m sending out holiday cards this year, and it’s truly overwhelming. I look at the list of people who donated to my go fund me, who sent cards and care packages, who dropped off meals and stopped by for a visit, and there is not enough stationery or stamps to write enough cards. Hundreds of you came through for me this year, and even if you don’t get a card in the mail, please know how important you were and are to me. I’m so rich in friendship, true connection, and love that I know none of this has to be faced alone, even when I feel alone.
So let’s end this blog post on a high note. Thank you for listening. Even if it feels like I am screaming into the void, I know you are listening and care. That helps so much.
As I have experienced the destruction and reconstruction of my body this year, I’ve had to face the hard truth: I will die. My dad died this year. We are all going to die, some sooner than others.
Writing through my illness has helped me focus on what is left: life. I am still alive, my mom is alive, many of my friends are alive, and even though the world looks different through that lens now, I am still alive, so how am I going to live with the knowledge of death?
We all have to face this, no matter how much we ignore the simple fact that humans don’t live forever. Add in some other truths: like many other systems around us are on the brink of collapse as well, and the futility of it all easily opens the door to despair. I struggle with it, and I know many of my friends struggle with it too, so when I saw a link to this video, I clicked on it more out of curiosity than out of the expectation of an answer.
I came away electrified. Sarah Wilson had come to the same conclusion that I had with my cancer.
As Sarah said, “I feel more alive and connected than ever before. The urgency of what is going on has forced me into living fully and living fully now.”
Yes. This.
Conveniently, on my “living fully now” list, is the desire to create my own TED talk. I don’t love public speaking, but over the ten years I spent developing the Oregon Desert Trail, I gave at least 100 presentations about the trail and faced my fear of forgetting how to talk in front of crowds of people. I still get sweaty palms, but by speaking in front of strangers, I have been able to build connections and foster curiosity in others, something that compels me to keep going. A TED talk is on another level than speaking at a small library… it could get filmed and posted like Sarah’s was (if I’m lucky), but I’m not going to let that stop me.
There is something here I want to say, and I’m still figuring out how to say it. The workshops, conferences, and books I’ve immersed myself in the last month are helping me pull memories and insights from the fog of my experiences and throw them into the soupy mess that will become my memoir. I think creating a TED talk will help me solidify my intent while putting pen to paper.
Luckily, the Bend TEDx conference is coming back next year. I will apply, and if chosen, will try out some of the content I’ve been working on for this book project. Deadlines can cause panic, but they can also force action, especially when I’m in the formless shape of an unstructured life. I definitely strive to bring structure to my days, but sometimes that all falls apart and I’m left a puddle on the couch, staring at the wall.
So if you find yourself staring at the wall too, overwhelmed by the impending collapse of everything we know, it is helpful to ask yourself:
If this was my last day, last week, last month, what would I want to do?
And then do one of those things. And write them all down on a list, and do more of those things, and so on and so forth. Before long you may be living fully in the present or maybe you will discover you have already been doing that. What I’m trying to say is, please do those things now instead of waiting to act until the day when everything is perfect…that day may never come. It’s cancer; it’s a climate catastrophe in your city; it’s an authoritarian government that takes your rights away. It almost doesn’t matter what it is.
Live now. It’s all we have.
Since the commenting has been so buggy lately on this website and an upgrade would be very expensive, I’ve decided to share these posts on my new Substack where commenting will be much easier. So head over there if you want to leave me a message.Note: My substack is free, I am not accepting payments at this time, so feel free to choose “no pledge”.
With so much uncertainty these days – both with my illness, my dad’s illness, and in the world – it seems the most logical thing to do is to focus on each day. What in the day makes it a success? What is there to be grateful for? It’s as if the most cheesy sentiments are my mantras these days…and they keep me going.
I’m halfway across the country right now, down in Lafayette, Louisiana, visiting my parents for a few weeks.
This is the first time in years that my three brothers and I have been with my parents in the same place at the same time; it has been a wonderful visit.
Before I left Bend, I had a barrage of doctors’ appointments, and once again, things are promising! The neck surgeon gave me the best news of all, my neck (a constant source of concern and soreness) is healing well, although I’ll probably have the neck soreness for the rest of my life . But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement.
I just have to use pain as my guide.
Easy to say, let pain be your guide… I won’t know it’s too much until the pain comes on, but there is hope in that guidance as well. He said the only things I need to avoid are axial loading activities, like standing on my head, and I can safely say I will be doing no such thing! I’m even starting to consider putting on an empty day pack and slowly adding weight over time. If I can walk with a day pack, the world seems much more doable…and my plans of a Camino journey even more likely.
The best outcome from these doctors’ appointments was the clearance to walk a section of the Camino this fall. More to come on that as I start to put that trip together, but I will be heading to Portugal for a few weeks in September! I’m thrilled at the prospect of stretching my legs along the coastal path, all with a bed to sleep in each night, coffees and cafes along the way, and meeting people from all over the world. Yes, I’ll be going solo, and I’m excited about the prospect of trusting the world in this next journey. I’ll be blogging daily again on that trip, it will be just like old times!
I’ve been sharing my story with a wider audience too. The National Brain Tumor Society asked to feature my writing on their blog, so they put together a wonderful little feature from my blog this year.
What else is new? I did my first water aerobics class yesterday, and wow, am I sore! I had to modify my moves in the pool…too much jumping is still quite jarring to my spine…so I slowed my roll as needed with the lovely older ladies that were in class with me. My cousin Amy helped me get a pass to her pool because I quickly found that going for a walk in July in Louisiana was WAY TOO hot and humid for a comfortable jaunt. I either have to get up before the sun or head to the pool for any exercise while I’m down here.
I have a busy, busy schedule when I get back to Oregon. A ton of doctors’ appointments await me, including a full body PET scan…cross your fingers for me that all my tumors are still getting smaller! Then it’s Kirk’s birthday, a visit from my Aunt Barbara, a Burkina Faso Peace Corps Reunion, a trip to see some friends in Eastern Oregon, PCT Days in Cascade Locks, and maybe even a trip to the Oregon coast. It may be too much, but I like to be optimistic and ambitious, so we’ll see! All the while, I need to ramp up my miles so I have hope of hiking 5-10 miles a day on the Camino in September.
I’m taking each day as it comes, but also giving myself things to look forward to. And I have so much to look forward to!
I grew up listening to this song by the Scorpions, and it still brings a pang of longing and sadness, and is it hope? And I didn’t know the full undercurrents of the song at the time, but its wistful tone certainly resonated with me.
And I have been facing so much change recently, it’s hard to get my bearings. Especially in the month or so since the news of my promising scans…it seems I’m on the verge of seeing a life for myself again, but of course I’ve still been living a life…but you know what I mean. I’ve had to live in the present for the past six months, so much so that looking beyond the next week or few weeks just didn’t seem possible. But all this word salad is to say the only constant is change and I’m grateful that I’ve had such a secure base of loved ones that have provided enough stability that I can weather the winds of change with a bit of grace. It’s like I’m a blade of grass, blowing in the wind. Sometimes the wind is whipping me around, bending me almost to the ground and roughing me up, but you all keep me grounded, set in place, so that the wind can try and rip me up, but it can’t. My roots are too deep.
Woo, can you tell it’s 3am and I’m back in my early morning writing phase? 😄
I’m sure you are all eager to hear about the big birthday party bash…it was fabulous! I think almost 50 people came out to Amber’s place in Corvallis. People brought flowers and snacks, fresh strawberries from nearby farms, and so much joy. It was such a lovely gathering….even though something got to me. It might have been a bad sandwich, or the heat, or some pain I’ve been having in my left shoulder, but I vomited several times on Saturday and it aggravated my throat enough that I lost my voice, and it left me with barely a whisper. Really, it left me mostly listening to everyone around me chatting about adventures past, present, and future. And so much serendipity happened! Dr. Grant, a hiker I had met at the Cascade Ruck last year came, and just happened to be heading down to hike the Bigfoot Trail, and wouldn’t you know it, Fireweed, who is on the Bigfoot Trail board and was planning on giving her a ride to the trail was also up for the party and the two met for the first time. Dr. Grant even got a ride down from the party on Sunday to start hiking the trail. And Anne, Amber’s wife, connected with my good friend Sage when I remembered they were both from the same very small northern Californian town…so small that of course their paths had crossed many years ago when both lived there, yet they were meeting at the party, of all places, years later.
The magic of people, good people, is a big part of what is keeping me going. Such kind and generous people. Sue, a volunteer that I’ve had on a couple of ONDA volunteer trips, came as she lived in Corvallis, and wrote to me later and said “I knew no one, except you, when I showed up. Yet— I knew immediately this is “our community”. You, your life, your work, brings out the good in people —- just like the mountains, the rivers, the oceans, as we traverse this earthly landscape.” That is just everything. My heart is full.
Sue!
So yes, I was sick and it lingered the next day, but we ate bagels and drank coffee in the shade of Amber and Anne’s giant sequoia tree in her yard, playing “move with the shade” as the morning sun shifted in the hot day.
Nemo and Pouch (my PCT 2006 besties) won the award for having traveled the farthest…from upstate NY! Just for the weekend!
We called ourselves “Team Primary” in the North Cascades on the PCT because we were in blue, yellow, and red rain jackets half the time.
There were so many people I hadn’t seen in ages who came out. I couldn’t have asked for a better party. I hope to have many, many more. Some suggested it be an annual thing! Who wants to host next time?
And of course, Amber’s Nomadic Pizza was a huge hit. She and our friend Megan sweated for hours slinging pies for us in the hot, hot wood-fired food cart, and it was so delicious. (Amber can cater private events like my party…please book her if you have something coming up!)
The pizza guru, Amber
This week has been one full of doctor’s appointments and hanging with my little brother Dan. He just bought a new car and wanted to stretch its legs and see me too. Dan is in the Air Force based in San Antonio, so he drove three days up, arriving just in time to go out to dinner with Kirk and me on my actual birthday (Monday, June 9….the best day of the year!).
He took me to meet my new oncologist and to wrap up with my old one. He took me to get more labs done and along with another MRI. We took walks along the river and drove up to the mountains for an afternoon, too. It was a chill but wonderful visit. Thanks Dan!
Doing the tourist thing in Bend.
I have more appointments before I head out again to visit my parents next week. All three of my brothers will be down there too, so it will be another busy week. My dad’s Alzheimer’s is progressing, and his time is limited, so I’m glad we are all able to gather together.
So even though my prospects of health continue to improve, I’m still caught living in the moment, paying attention to each day as it comes. The peonies that I got for my birthday are a good reminder of that…each day they open a little more, changing ever so slightly, but changing, so that it’s worth stopping and appreciating them in each slight phase. Sure, I could think ahead to when they are dead and gone, but why do that when they are vibrant and alive and in front of me now? Enjoy them. Enjoy this. Enjoy the moment.
I saw the neck surgeon this week to evaluate my collapsing C7 and look at my C4 three months post surgery, and I got the all clear! The doc said the C7 doesn’t have to be addressed, and that I can live with it (we didn’t talk about backpacking, I have a feeling a full-weighted backpack might paint a different picture). I then took some x rays which showed that my C4 is appropriately healed. So that means I can start taking my c-collar off. Get ready for some neck!
So the last few days I’ve been spending more time with it off, getting used to the weight of my head again. I’m practicing turning my head and nodding again, all things I haven’t been able to do for three months. A bulk of the work will come to play with my PT. I’m transitioning away from the in-home PT to an outpatient situation, and it’s like I’m graduating or something…I’m slowly being positioned to live without daily doctors appointments and check-ins. We are also looking at decreasing my meds…I’m already off the steroids and we are looking at the pain meds next. Am I in pain anymore? It’s hard to say. Are the meds masking pain or do I even have pain any more? I have discomfort for sure, but pain?
All this is coming as I look at making my first trip to the trails summit in Wisconsin in three weeks. Can I be ready to walk around without my collar most of the day in three weeks? Can I have a glass of wine at a happy hour in three weeks? Can I sleep without an adjustable bed in three weeks?
The rash is still rashing, but it’s not getting worse, I guess it’s clearing up, maybe a little?
I still feel the cancer in my spine and in my ribs. Is the tagresso doing it’s job? Maybe a little?
I’ve been sleeping a lot. Like half the day away, but again, I’m not fighting it. But I feel like I’m in a bit of a daze all the time. Sleeping so much puts a dream-like quality to everything. If I’m not myself right now it’s because I’m a dazed and dreamy version of myself.
I’m struggling with the habit of productivity. I went on a walk with a friend yesterday and we talked a bit about it. She wondered if it was a mid-western quality…this need to always be moving some ball forward, even when dealing with stage 4 cancer. What am I trying to be productive about? Well, writing here for one, diving into my past for two, and putting out there that I want to write a book (Really! Sometimes that just seems insane), and then writing thank-you cards for everything. That it’s ok to let some or all of it go. I know that it is, but the blog serves as a processing time as well, and it is keeping you all in my life, which I really need these days.
I got a card from a stranger, a hiker that has been reading my blog for years but I’ve never met, and I needed to read that card that day. It made such a difference in my morale and mood. I need all of you in my life, so I want to be productive enough to update the blog to keep you all informed and close. I need all of you.
I got another card recently from a volunteer that came on one of my trail work trips last year. I only met her that one time, and she wrote the most beautiful card with gifts of song and book recommendations. I love that, that kind of thing fuels my day, and I’m thrilled to add to my reading list too 🙂
So all of this to say, I don’t know where my need to be productive comes from, but I don’t want to give up the need to write, and sure maybe I’ll stitch some of this together into something that could be called a book, but I do want to give up the idea that I’m going to come out the other side of this looking for a publisher. I want to give myself time to just be. And right now that looks like a lot of sleeping. Not as much reading as I’d like (reading puts me to sleep right now), but I’m just going to let it be and not fight against it.
You will probably have to remind me of that from time to time!
. But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement. 
She-ra Hikes 