Tag Archives: life

Choose Joy

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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.

Write from the Scar

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In happier times…just a few days ago in fact! At the ONDA Christmas party with Phyllis and 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.

The Hard Truth

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All of this will end.

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”.

Cancer Update June 26

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Every day is a gift. 

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. 

How a Hiker’s Life Changed Overnight: A Metastatic Lung Cancer Story

Then I did a podcast interview with Hikertrash Radio about my journey as well:

I’ve done countless podcast interviews in the past, and you can listen to a previous one I did with Hikertrash Radio here:

For even more podcasts check this out.

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!

Cancer Update June 12

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Look at these beautiful people!

The only constant is change.

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.

March 23 Cancer Update

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Get ready for some neck.

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! 

March 20 Cancer Update

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I was doing this last March 20…section hiking the Idaho Centennial Trail.

It’s the first day of Spring. Lets do this.

I’m ready for some change.

In all honesty, I’ve seen a lot of change this week. For one, I’ve been sleeping! Something flipped last weekend and suddenly I was sleeping most of the night and sleeping throughout the day. I couldn’t sleep enough. I was in a dis-combubulated haze of sleep for a few days there, and didn’t fight it. I don’t know if it was transitioning from Trazodone to Magnesium Glycinate and a sleep THC/CBD tincture, or maybe it was decreasing the steroid I was taking, or maybe it was my body saying, “enough,” but it was time.

I’ve also been seeing changes in the form of some of those side-effects from my new mutation drug, Tagrisso. There was a line about adult acne in the list of side effects, and a few days ago my legs erupted in a red rash of something. It’s not really itchy, but it looks bad. Real bad. I had a consult with the docs this week and they prescribed a steroid cream for it, and my acupuncturist suggested drinking celery juice for it’s anti-inflammatory and cooling qualities (Note: for those of you suffering from high blood pressure, try some celery juice!) I fully believe that food is medicine, and hope to be learning more and incorporating more food medicines through this journey of mine.

What else has been going on? Oh it’s winter again, or it was for a while this weekend. Snow and ice have covered the ground and curtailed some of my daily walks…I think that has added to my malaise.

And I’ve lost my taste for coffee…I’ve gone several days without it, which is very odd. Oh and my stomach is a mess. I can’t seem to digest anything.

So in general I’ve been living in a foggy state of existence this week. I’m not sure if I’m snapping out of it? I woke up at 1am this morning and got up, so we’ll see. 

You all continue to send me exciting books. I’m eager to read some of the new arrivals: Between Two Kingdoms, Wind, Sand and Stars, and My Journey to Lhasa. One that I’ve been working on for a while now and am almost done with is The Mission Walker. I’m really in the mood for good adventure books.

As for shows, Kirk and I just finished season 1 of Severance, and just started season 2. Go Mark and the Innies!

In general all the changes seem to be not so productive. I haven’t seen a big difference in my pain levels, in the feeling in my spine and ribs. I hope the new med is working, but I guess we won’t know for a while. At least I don’t feel like the cancer has changed course since I started Tagrisso, but who knows.

I don’t think I’m going to deep dive into past stories today. Not feeling it. 

Instead I’ll open one of those books and read until my eyes can’t stay open and then go to bed again. 

Peace out.