Survival is a Creative Act

For today’s walk I listened to music. It’s a simply wonderful combination: walking and song.

I want you to have an experience with these posts; there are links to songs, videos, other websites, and many various adventures. So here is your invitation to leave the tab open and return to find the link to the podcast or watch the movie. Take a walk and play the song. Think some thoughts and make some notes, or just leave space to let them emerge as the morning or afternoon unfolds. You may need an hour, or two…sometimes you might need a week for your brain to untangle and release. At least that’s how I work. You do you.

Today’s song is Frank Sinatra Jr’s Black Night. If you liked that one, you also might like The Ocean by Richard Hawley, The Rip by Portishead, or Empire Ants by The Gorillaz. The crescendo of each song echoes somewhere deep inside. You know how I wrote about using sound vibrations earlier this year to help kill the cancer? I think that’s what these songs do too. They vibrate something vital inside me, and the result is elation and joy. I hope for you too. 

Today I want to talk about creativity as a force for survival.

When my neck started spasming last year, the aspen trees in the glaciated gorges of Steens Mountain had just started to turn gold. I was leading a trail maintenance trip for National Public Lands Day, and I knew something was very wrong. I was due to fly out the very next day to start a 400-mile thru-hike of the Pinhoti Trail, which I would connect to the Benton MacKaye Trail, turn east, and hike to its terminus at Springer Mountain (also the start of the Appalachian Trail). I planned to bookend the hike with a visit to Pinhoti Fest before I started walking, and finish with the Benton MacKaye Trail Association’s Annual Meeting and Hike Fest at Unicoi Lodge in Helen, Georgia. I intended to make further connections with the founders and stewards of both trail organizations to explore how I could add my expertise to their trails with my long-distance trail consulting business. This was a working hike, but also my vacation. Where do I stop and my job begin? I’ve never really known, having always (or most of the time) worked within a passion.

That beautiful fall day changed everything. Once my neck started to spasm on the last evening of the trip, the jolts continued to shock me, racing from my brain, down my spine. I had no clue what was going on, and quickly said an early goodnight to my volunteers as tears streamed down my face. I thought rest and lying down might ease the bewildering condition, but no. My neck spasmed about every five minutes during the long, late-September night. I cried with fear and pain, hoping the others couldn’t hear the extent of my anguish. Something was very wrong.

I avoided facing the truth even after I managed to make the five-hour drive back to Bend and directly to an urgent care. An exam showed nothing of concern, so we blamed the spasms on a few nights of a poor pillow. I could still hike, right? Meanwhile, on the East Coast, Hurricane Helen had just hit land, tearing up the communities, towns, trails, and mountains where I had planned to hike. I rebooked my flight for a few days hence to see how my neck and the storms would play out.

This wasn’t supposed to happen, to my body or the inland communities along the Appalachians, but one thing was clear: much of the region I was planning to hike in was devastated. On the bright side, the Alabama portion of the Pinhoti Trail was spared, but it seemed in poor taste to frolic down the trail when people were suffering just a short distance away in Georgia. 

The east coast hike wasn’t going to happen, so I fixated on the Oregon Coast Trail. This 413-mile hike was close to home, had many towns (meaning I could find an easy out if my neck continued to give me grief), and I had already planned to be away from work for a month, so I threw myself into last-minute planning to walk a month along the sea. 

I planned to travel to and from the trail all using public transportation; it would be a cool experiment! Since my passion is my work, I started to turn this trip into another opportunity to evaluate the resources and infrastructure of the trail to see how I could improve it from a hiker’s perspective. I decided to start my hike a week out from that urgent care visit, which would give me time to get a few sessions of acupuncture and massage, and push past the pain in my neck to keep going and hike anyway. I’ve done it before, hiked through fresh and recent injuries, that is. 

The day before I started my October groundtruthing hike of the Blue Mountains Trail in 2020, I walked out of the house barefoot, and a stray nail sticking up from the door frame tore a fourth-inch chunk out of the sole of my foot. The flapper was deep enough that I had ripped through a significant portion of skin and callus. I panicked, immediately cleaned out the wound, put some antibiotic ointment on it, and elevated my foot until Kirk came home from work. I shook as I showed him the wound, but slowly convinced myself and him that I could keep it cleaned and protected as I hiked for a month solo on a difficult backcountry route in north eastern Oregon. And I went, and I was fine. So I’d be fine this time too, right?

After a week of treatments, I was convinced this Oregon Coast Trail thing was a go. Kirk and I decided to head up to Waldo Lake for the weekend in our camper so he could foilboard while I read in a chair in the sun. I still wasn’t 100 percent, but I had convinced myself I would heal on the hike, much like I had done on the Blue Mountains Trail. The morning we were set to leave, I was stretching when something twinged in my back and I instantly knew I wasn’t going hiking anywhere. All the progress I thought I had made was gone in that twinge. I didn’t tell the rest of my body, though, and I packed up my backpack and headed out for the weekend. Over the next two days, it was apparent that I was having trouble moving normally. Carrying much of anything caused more pain, and I finally voiced out loud that I wouldn’t be hiking the Oregon Coast Trail. I returned home in a slump. Two hikes had now been thwarted in the last week. 

Now what?

It wasn’t until I was on a morning walk recently that last year’s hiking (or non-hiking) saga gained more shape. I headed out into the frosty morning with freshly charged earbuds in place and strolled along my normal route along the Deschutes River. That morning, I listened to Rich Roll’s podcast featuring author and fellow cancer navigator Suleika Jaouad, and I saw my decisions in the wake of my physical limitations in a new light.

Suleika has experienced survival as a creative act. I read her first book, Between Two Kingdoms, this year, shortly after my diagnosis, and quickly pre-ordered her second book, The Book of Alchemy. The more I learned about her story, the more I identified with her struggles. When I heard her leukemia returned for the third time before the launch of her new book, my heart just bled for her. For us. 

Back to last October: when I realized that I would not be hiking the Oregon Coast Trail, I decided to go ahead and do it anyway, but from home. I decided to embark on a virtual journey and pretend that I was out plodding through the sand and feeling the rain sting my cheeks in groves of old-growth trees that rim the bluffs over the Pacific Ocean. I would virtually hike the Oregon Coast Trail.

Ever since I set foot on the Appalachian Trail back in 2002, I kept a daily journal. Those hand-written missives from the AT are lost, but from then on, I wrote and posted them online. From my hike during a break from grad school along the West Highland Way, to my thru-hike of the Colorado Trail and the culmination of my summer of leading trail crews, I chronicled the rain, sleet, and snow. The blisters, spider bites, and those few times I caught myself on fire from my beer-can stove. Yes, there were multiple times. Over the years, I shared my joys and struggles with a small group of loyal blog-readers, but more importantly, I found great joy in writing for the love of writing. I didn’t care if anyone else read about day 56 on the Pacific Crest Trail or day 5 on the Sunshine Coast Trail, I loved waking up in the early morning and capturing the feeling of the day before. 

So when my body wouldn’t let me hike last fall, I decided to wake up early each morning, read the guidebook (shout out to Bonnie Henderson and her excellent resource), reference the FarOut app for real-time updates from other hikers, study the weather, decide how many miles to walk, where I would camp or find lodging, where I would eat, what interesting things I’d see during the day, and how I would navigate the many gaps in the trail. I wanted to turn this virtual hike into a visual journey as well, so I planned to create a story map that I would build on, publishing each new day on the story map as I would on an actual thru-hike.  The Oregon Coast Trail is a logistical melange of hazards like high tides, which make certain sections undoable, or eroding cliffs from a perpetually stormy sea. I wanted to experience those hazards, even if remotely, and decide how I would proceed if I were actually there.

Story mapping had become another passion by this point, and over the past few years, I had been creating them professionally for other organizations. The medium harkened back to my college days where I dove into multi-media projects, combining images with prose, sounds, and even videos. And since my virtual hike was quickly becoming another work/passion project, I decided to add on elements from a second business I had started recently, called Intentional Hiking

Yes, the title gives it away – with Intentional Hiking, I hosted several conversations a month about ways hikers could cultivate a deeper engagement with the world around them as they were out for a day hike, week-long backpacking trip, or a long thru-hike. I invited experts to talk about things like collecting data for Adventure Scientists, learning how to identify plants and animals to contribute to research projects on iNaturalist, or even how public land management agencies are integrating Traditional Ecological Knowledge of indigenous peoples into federal planning processes. To apply this to the Oregon Coast Trail, I decided I would identify several aspects hikers (and I) could engage with as we walked. Those items were categorized and marked on the maps as: Fun Facts, Trail Stuff, Environment, Military History, Exploration History, Tribal Nations, Art and Culture, and Take Action. Each morning, I would wake at my usual 4am, spend the next 4-5 hours researching, writing, and adding on to my story map, and publish that day’s hike on my blog. 

By the second week, my creative act had become a bit oppressive, given the sheer amount of time it was taking me to create each day’s exploration. The added weight of my painful body didn’t make things much easier. After my morning creation, my days were filled with appointments. They ranged from sessions with a physical therapist, massage therapist, chiropractor, acupuncturist, and my primary care doctor, with little result. I could barely move. 

I kept going because that’s what I do. I finished the project on October 31 to reflect when I would have finished in real time. I remember my neck and back were feeling a hair better…in fact, everything was feeling a tad better, that is, until I slipped and fell on a wet floor while shopping on November 1. It was the kind of fall that you knew would be bad on the way down. As my feet flew out from under me, I had long enough to notice the “caution wet floor” sign by my right leg, and also know I was in trouble. I landed hard on my right glute, whiplashed my head, and passed out. 

I will tell you the rest of the story another time, but needless to say, my troubles were only getting worse, and I was still about two months out from my cancer diagnosis. Life sucked, but it sucked less when I could focus on things like the virtual Oregon Coast Trail by ignoring my pain as much as I could to do something that brought joy.

I want to say many more things about how the creative act is survival. Many of you have seen it play out in real time through my blog this year, so stay tuned as I unpack more layers of pain and being so that I can continue to not just survive, but thrive through my creativity.

Slueika was in remission for 10 years before her cancer started growing again. The road ahead seems so long that I think the only thing that can get me through this is exploring what it means to be alive, creatively. And what a gift to the world that Slueika and her husband and musician Jon Baptist are giving to the world by doing the same. 

Check out American Symphony on Netflix if you want to learn more about these two, they take my breath away. 

Portugal Prep

Kirk and I took a day hike up to the base of 3 Finger Jack last weekend. It may look extreme, but this point is only 2ish miles from the trailhead! The worst part was driving up the washboarded dirt road, which was much harder on my neck than the hike.

I mentioned my intention to hike some of the Camino de Santiago thru Portugal in one of my last posts, and now, buoyed by all the good health news, I’m making it happen…and all of a sudden, the trip is soon, very soon (like September soon!) 

I’ll be writing here daily while I walk, and now my time is filled with logistics like: 

  • Whats up with the whole luggage transport system? Since my back/neck/shoulders still can’t support a pack I’ll be paying to have my roller carry-on bag transported each day. There are several companies that offer the service, and you only need to book 48 hours in advance, so that leaves room for serendipity…especially important because I don’t know how many miles per day my body will tolerate yet.
  • How do I book hostels, hotels, or auberges? Fortunately, many of these lodging options leave half their beds open for first-come walkers….In the day and age of cell phones and reservations, that is amazing, and again leaves some time for the hike to evolve as I see how the miles are feeling. I do have the first three nights booked, though.
  • Visa? Not needed
  • Money? Debit and credit cards will work, although I’ve had to check the international fees for both…since my trip is relatively short, just a few weeks, it sounds like getting cash from ATMs along the way will be an advisable way to go
  • Gear? I’m experimenting with a few different lumbar packs to carry things like a raincoat, umbrella, snacks, and water…I used the Gossamer Gear Piku this past weekend on a day hike, and loved how light it was, although the larger capacity (nine liters) means I can still put too much weight in it, like I did for a walk around town this week 😬. I have a Mountainsmith lumbar pack on order to try, although it comes off the shelf much heavier at 1.56 lbs vs the Piku at 8.9 oz.
  • Blogging? I thought I would bring my Surface tablet with keyboard to write at cafes along the way, but on my hike around town, it seemed heavy in the pack…I could just type on my phone like I do on regular backcountry hikes…we’ll see. I’ll take some more hikes with it and decide later.
  • Language? I’ve been taking some Portuguese lessons on Duolingo, but a big portion of the way will be in Spain (about 100 miles vs 70ish in Portugal), and I don’t have time to get good at two languages. Anyway, I hear English is pretty prevalent, and I can always rely on Google translate.
  • Sleeping? Since I’ll be in a bed each night and can transport whatever fits in my roller carry-on, I’m planning to bring my 40-degree feathered friends quilt, an inflatable pillow, and a silk liner for the beds. I hear i will need to be alert for bed bugs, so I am getting versed I need what to look for.
  • Food? It will be quite an urban experience, so I’ll have cafes and restaurants all along the way. I will also probably take advantage of grocery stores and hostel kitchens to buy and make my own meals…as for eating restrictions, I’m going to be a bit looser with my diet and eat what is fresh and authentic…I want to immerse myself in the experience, and if that means an occasional glass of wine or pastry with lunch, so be it!
  • Navigation? I bought the Wise Pilgrim guidebook and app, and I also made my own data book in miles vs kilometers, and have the route uploaded onto Caltopo, which I’ll use on my phone too.

There will be other questions that come up as I’m putting this trip together, and I’ll probably post once or twice more to share that with you. I’ll also post my gear list and anything else you might find interesting. Have other questions? Leave a note in the comments! 

I see this as the first of many Camino-style hikes I plan to take since my body is different now, and as I’ve mentioned to some of you, I see developing these type of hiking opportunities for the less-able bodied or people who simply want to eat good food and sleep in beds as a potential pivot for my business once I’m able to start working again. Exciting!

Testing out the Gossamer Gear Piku lumbar pack.

Cancer Update June 12

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.

Cancer Update June 3

Did those few weeks even happen? The few weeks where Kirk and I lounged on beach chairs under thatched shade and watched waves the color of turquoise gently touch the white sand shore?

We went deep into sleepy vacation mode, and it now all seems like a quick dream.

And it’s June all of a sudden! Otherwise known as birthday month 🙂

Let the wild ruckus begin!

I have a feeling it will be similar to the birthday I celebrated on the PCT in 2006 at Walker Pass…

So many wonderful people are arriving this weekend for my party at Amber’s place, it’s going to be so much fun. She will be slinging her scrumptious wood-fired pizzas and I’m excited to be immersed in my most treasured place: among dear friends! 

Back in the real world I got a news update that had me in a great mood. Apparently exercise is ‘better than drugs’ to stop cancer returning after treatment. That’s just the news I needed to hear. I need to ramp up my miles if I want to hike some of the Camino this fall. My default state lately has been resting as I’m still dealing with neck, shoulder, and body soreness every day….but now I have more motivation to walk despite the aches. 

“Patients who began a structured exercise regime… had a 37% lower risk of death and a 28% lower risk of recurrent or new cancers developing, compared with patients who received only health advice, the trial found…Their weekly target was the equivalent of three to four walks of between 45 and 60 minutes, but patients could choose how they got more active. Some went kayaking or skiing, for instance.”

I mean, it’s like the world is begging me to keep hiking.

I still am getting caught up in the surprise of it all. That my life is 100% different than it was a year ago. 

A year ago Kirk and I spent Memorial Day snow camping and ski touring up our local back-yard mountain, Broken Top. We skied in with heavy packs and plenty of snacks for several days…a prospect I can’t even imagine right now. 

A year ago I was strategizing which trails to hike next and how to improve those trails through resource development…a la my trails consulting business.

A year ago I was hosting several conversations a month at Intentional Hiking, trying to encourage the trails community to take a more active role in the world we are hiking through.

Today, that is all gone. Well, not gone exactly; the trick now is to find out how to live what life I have now to the fullest, not knowing how much time I have left. Some argue we should always live this way….but I do know inside and and out that walking and hiking will still take center stage in whatever way I choose to live now.

Cancer Update April 30

Joy on the Oregon Desert Trail

When I was growing up, I believed the world was magical and filled with wonder and surprise. A childhood spent in nature only confirmed it. And then there were the movies and books I read. I already mentioned the all powerful Wizard of Oz, but this past week I’ve been going down the rabbit hole of all the childhood delights: Alice in Wonderland, The Neverending Story, The Last Unicorn, Mary Poppins, The Princess Bride, and most of them hold up. Screen time back in the day wasn’t like it is now. I would watch these once a year, or once we got a VCR, maybe monthly, because most of my time was spent outside…my mom would push me and my three brothers outside, and I am so grateful for that now.

Do I still believe in magic and majestic adventures?? I will admit that the wind has been taken out of my sails these past eight months (eight months of sickness so far!!!), but the magic has shown up in many of my relationships with you, and I find I’m so rich in amazing people in my life. 

And now that things are about to change, I can dive back into the wonder and awe that nature brings into my life. My hiking will be different now, but I know it will continue to bring complete strangers into my life and that they will quickly become great friends. And it doesn’t even have to be a thru-hike. I had an incredibly moving walk this weekend. Of course, spring had a lot to do with it, Bend is practically bursting at the seams with flowers and birds, and green everywhere….which is saying something for the desert. My walk helped to wipe the darkness from the corners of my mind. A darkness that was dragging me down to its sleepy hopelessness. (That reminds me of another movie: Legend, the 1985 version with a young Tom Cruise!) I took a walk and had some fantastic laughs with friends, and the world became whole and hopeful and wonderful again. Even if this is my last spring, this feeling is life, and I’m quite in love with it all. A walk is the engine for all the feels.

But thru-hiking, man, it just doesn’t get much better than that, and finding a good hiking partner that helps you see color is a real gift.

Check out this video I made of a short thru-hike of the Sunshine Coast Trail with Nemo back in 2018.

This sums up the feeling fairly well:

Will I carry a pack again in the wilderness? Will I be able to immerse myself in the far backcountry for weeks at a time? I don’t know, but I do know I have to make peace with this new body, or this new reality. And work? What the heck am I going to do if the focus of my business before was hiking a long trail to evaluate how to make it better, safer, easier for hikers to be successful? To make new trail resources and help a trail organization communicate with their hikers? Maybe I can help develop more hut-to-hut or bnb-to-bnb type trails in the US (Europe is spoiled for them) since those might be the only trails I can hike for a while. Maybe I’ll revamp the National Recreation Trails designation (something I’ve been wanting to do for years now! And a post for another day).

The news I got this week has helped fuel these thoughts. I know, I know, you will say I buried the lead, but I had my scans this week and met with my oncologist, and…it’s working! I’m officially in maintenance mode!! That means no more chemo for now. He said my body was chemo-d out…and man, do I feel it. I am still so tired. I have no appetite, I’m still losing weight and am quite nauseous, but the farther away I get from chemo, the more my body should find its equilibrium. The treatments have been working and he said I’m responding really well to the Tegresso and chemo…the combo helped to knock the tumors back a bit, and some of my brain ones are completely gone! I mean, I still have tumors, and might the rest of my life, but they are in check now. I’ll continue with the daily targeted med indefinitely and hope that I can regain my strength. This is a life-long disease, but I can see a life again. 

There were tears of happiness yesterday when I heard the news….I’m bursting with the news.

So, things are happening this May! I’ll be on the road a lot, and you might not hear from me for a while. I have some nature bathing to do, visiting family to do, and even a spot of vacation with Kirk…he has dealt with so much these past eight months. I hope you all have a Kirk in your lives who is there for you when something completely unexpected and wild is thrown at you like this was.

Don’t worry, I will still keep blogging…it’s my way of processing this whole thing, and has been the way I’ve been sharing my hikes with you for over 20 years now. You could fall down the rabbit hole of my hiking journals for weeks and months if you explore some of my past hikes in this blog. And there will be future hikes, I can just feel it. And I still have more I want to explore…more memories and past lives, it’s fun to rummage around in my youth to tease out the elements that have led me to where I am today. 

With that, my friends, remember that I’m having a big birthday party on June 7 in Corvallis. Please let me know if you want to come! Everyone is welcome.

Peace out, I’m going rafting! Or really, I’m going to sit on the raft very gently while Kirk rows, but I’ll take it!

Cancer Update April 24

10 years ago this month I started my thru-hike of the CDT. In other words, a lifetime ago.

I have some scans next week, the first scans since early February, right when my chemo started. 

To say I’m nervous would be downplaying the swing of emotions I’ve been experiencing. 

I go from: “I feel so much better, I bet this is all under control…the 27 brain tumors, the tumors on my ribs and neck and spine, oh yeah, and the one in my lung, they are all under control and I can go into maintenance mode starting next week without any further chemo or radiation. Wooo! I’m excited to find out!”

To: “My ribs still feel sore and so do my neck and shoulders, what if there are new tumors on my shoulders and the ones on my ribs grew. Oh, I’m going to be in chemo forever, I’m scared!”

There are so many things I’ve been waiting to plan until I get these scans—the next few months at the very least. Will I get to visit my parents and go on a vacation with Kirk? Will I have some time to breathe and get my energy back? Will my body recover enough for me to start doing some longer day hikes? Will I be able to spend big chunks of time outside camping and adventuring? 

Will I get to raft the John Day River?

I can’t do any of things things until I get these scans done and meet with my oncologist next week. 😬

Ahhhhhh!

But the good news? I didn’t get sick in Wisconsin…at least yet. The trails conference had about 800 people there from all parts of the country and internationally….and we didn’t even have our federal agency partners there (too much chaos…people have jobs, they don’t. They have a budget, but not for travel. Ooops they lost their jobs again. All of this is crippling the very people we need to take care of our public lands. 😭)

I wore a mask most of the time, but it is still wonderful that I came home without a sore throat or a cold. My immune system must still be putting up a good fight!

Melissa and I in Madison…I went to high school and college with Melissa, some great friends came up to visit me after the conference. And thanks Anne for the photo! There’s that almost normal feeling again!

Maintenance mode of cancer seems like a swan song to me. To go months between scans, months of living a life. But that is when I will need to be most diligent…to eat clean, to exercise, to be postive, to plan for the future. That is when I need to keep the cancer at bay…yet I know it’s not a reflection of my goodness, my ability to do the right thing to prevent the cancer from growing…but it does feel that way. I’m good if my cancer doesn’t grow. I’m bad if it does. It doesn’t work that way, does it?

Have you been following Suleika Jaouad? Ever since I read Between Two Kingdoms, I’ve been keeping tabs on her. She has a new book out and a big huge book tour, but her cancer came back right as she was getting ready for one of the most exciting times. It can happen to all of us at any time. It’s sobering and scary. BUT, check out her new book: The Book of Alchemy…my copy should be getting here any day.

The yard is exploding in flowers…and weeds. I’ve been wanting to try to weed, but getting on my knees and digging in the dirt seems like a challenging prospect. I talked to my PT about it yesterday, and she suggested small spurts of work… bite-sized chunks of yard work and gave me a few poses to try out to prevent immediate fatigue, and I’m still nervous about it. I am also interested in trying a gentle aerobics session in the pool at the senior center, but she also cautioned me that those seniors can be deceptively strong…and to try not to keep up with them. It’s just so crazy to me. A year ago I was so strong and fit…and now I need to be careful of my energy when weeding. It’s just not fair.

Kirk and I just finished watching the new TV show Dark Matter (I love Jennifer Connelly BTW, ever since I would binge watch Labyrinth as a kid, she has been one of my favorites…David Bowie too! I know all the lyrics to the songs in that movie. David Bowie…swooon) The premise is all about multiple universes…an infinite number of universes and for every decisions or inflection point in our lives, there is a spinnoff of another life lived by another version of you with different outcomes. (It’s like another TV show I liked, Fringe). And I think, there is another Renee out there who doesn’t have cancer. There is a Renee whose cancer is more advanced, who already didn’t make it, who found it early, who doesn’t even like to hike…It’s infinite and mind-bending to think about. But I can’t go there, I know I shouldn’t go there, to think about me in a different context…I mean, what does it help the reality of now? To think what if we had found it early, and I recovered without it haunting me the rest of my life? To think what if I never got it in the first place, and I was planning a thru-hike of the Theodore Solomons Trail this summer? Nope…not going there.

Instead, I think about what I might do if my scans next week go well. The trips I’ll take, the relief I’ll feel.

And I think about weeding.

Cancer Update April 15

The view from my hotel room in Madison

Should I be writing updates when things are heavy and dark? Maybe that’s exactly when I should be writing updates.

I learned yesterday that a friend from college’s husband, who has stage 4 lung cancer with the EGFR 20 mutation (mine is EGFR 19) is not doing well and has moved into hospice. OMG, I keep thinking this is something I will move past, but it’s claiming people I know!

And some family members are really not doing well.

And more hair is falling out.

And my pet’s heads are falling off. 

(Sorry, that’s a Dumb and Dumber movie quote that my highschool friends and I used to reference incessantly)

The gravity of my situation has been feeling so heavy lately. This last round of chemo really got me for some reason. I’m much more nauseous that I’ve been since the first round and can’t walk as far…and I am still struggling to eat enough to keep my energy levels up.

Enough! Chin up!

I keep hearing positivity is the key, but do I have to be positive every freaking minute? Can I feel the weight of this and cry and rage every once in a while? Of course. There are no rules, but are there? There are so many books that I’ve been reading about how to live with cancer, how to eat with cancer, how to survive cancer, and there seem to be rules….but they are different for everyone, so we can’t tell you exactly what they are, but know that if you don’t follow them it won’t be good, or might not. We don’t really know why some people make it out and some don’t. So do the right thing, we just don’t know exactly what the right thing FOR YOU is, so figure it out.

Ahhhhhhhh!

I know my body is fighting. Is that why my hair is falling out now, and I have no appetite? Or is that the poison of chemo working its way through all the cells in my body? Or is that the cancer advancing?

How about some good news? I made it to Madison after spending all day sick in bed the day before my flight. I even looked at flying out a day or two later, but ticket prices were RIDICULOUS to reschedule, so I put on my big girl pants, packed a puke bag, and hoped for the best.

I had a delicious breakfast where I felt like a normal person. Normal!

And I made it. Travel day wasn’t too bad after all, and I had a wonderful dinner catching up with Jasmine. We laughed over the “turkey vultures” bit (see the last blog if you don’t know what I’m talking about) and remembered that it really was “pig vultures”. We were trying to get under our little brothers’ skin after all. “Pig Vultures!” we would screech as we peddled away down the country roads. They would circle and circle the intersection on their bmx bikes, hurling insults back at us as we laughed hysterically and coasted down the hill on our bikes, giddy with freedom.

Jasmine!

It was fun to tell stories, and apparently, we lived about a mile from the Ice Age Trail…I knew we were close, but not that close!!! A national scenic trail was evolving in my backyard and I didn’t even know it existed! It was designated as an NST in 1980, I was three, so yes, it was most definitely there. I have to hike it. I have to live long enough to hike it. And Jasmine’s mom still lives in the house I know so well, she can be my trail angel! She just doesn’t know it yet. In fact, I have a friend thru-hiking it right now, and he calls it a pub crawl, so maybe I can arrange for some of my gear to be transferred from town to town so I don’t have to carry much, and there isn’t much elevation gain, so maybe this is a trail I can hike in my cancer years?? 

Whitney and I went out for dinner with Luke last night, the executive director of the Ice Age Trail, and we talked a lot about it. That’s the magic of these trail conferences: you get to meet the people that do the thing! And that thing is trails, which I love so much!

Jasmine also told me that she remembered that I was very philosophical when I was growing up, and remembered lots of deep conversations that we had during sleepovers. While dealing with a bout of nausea in the hotel room yesterday, I did finish watching Wicked online, the prequel to the Wizard of Oz. Then I had to watch the Wizard of Oz of course, and was immediately reminded of its influence in my life growing up. 

Gotta love the saltines!!

Back then we just had a TV with a few channels. It was even before the VCR days. The Wizard of Oz would come on once a year around Easter (wait a minute….Easter is this week, in real life!). The story of a long walk, meeting kind strangers you ended up loving and having good and scary adventures with, must have planted the seed for what would become my thru-hiking life. That and the Ice Age Trail in my backyard (right by Fountain Lake where we spent sooooo many days swimming) and my dreamy philosophical nature.

Check out this map:

The x is where I lived, the circle is where Jasmine lived, and the + is where our other friend Katie lived. My freaking back yard!!!

I feel down, but then I start thinking about how many trails there are left to hike, how many places to see and people to meet, and I get excited again. And sure, I probably won’t be hiking the Hayduke Trail that I had planned to do in 2026, and the Great Divide Trail in 2027 for my 50th birthday, but there are plenty of other trails where I don’t have to carry 7 days of food and 8 liters of water on my back that can be added to my list.

I can do this, right? 

Birthday Party Registration

Ok folks! We are ready to go and open registrations to my party. Here are some details (they will be repeated in the registration form)

Date: Saturday, June 7 · 3 – 11pm

Location: Will send address once you register to attend.

Contribution: Suggested $20 donation per person to cover costs, any additional funds raised will be donated to Renee’s cancer fund (cash is great, we’ll also have venmo info available at event if you wish to donate that way).

Camping: see below.

***

Festivities will start around 3pm. Amber will be slinging pizzas from her wood-fired food cart, Nomadic Pizza, from 5-7pm, and we’ll have a keg, wine, non-alcoholic drinks, and other snacks available.

A porta-potty will be on site for use. And if you plan on camping or coming back in the morning (see below for more camping deets), we’ll have coffee and bagels on Sunday. If you do stay overnight please plan on helping us clean up with a departure time by 10am.

Please bring:

  • a snack/side-dish to share (afternoon snacks, desserts, late night snacks)
  • camp chair
  • mug/cup for beverages
  • a musical instrument (if you play!)
  • good vibes
  • yard games

Other notes:

  • Please leave pets at home for the party, FYI – Amber does have a dog.
  • Your $20 will help us fund the pizza party and any left over $ will go to Renee’s cancer fund.
  • Space for camping at Amber’s house is limited depending on interest, please plan on tent only camping (for about 20-30 tents), or you can sleep in your car. Her address will be sent after registration along with some other lodging options (there is no real space for RVs but there is a near-by park & lots of hotel/air bnb options in the area too.) We suggest setting up your tent later in the evening so there is room for yard games and dancing and general merriment.
  • Amber only lives about 2 miles from downtown Corvallis – you could walk or bike to the party if you plan to stay in town!
  • If you are interested in helping out, we could use a few extra folks to help us with some logistics on Sat & Sun. Bellow there is a spot where you can indicate your interest and we’ll be in touch! Things like picking up the keg, helping direct parking, picking up coffee Sun morning, etc. (Oh, does someone want to make a birthday cake???)

Cancer Update March 28 & Wilderness Therapy

The ladies of wilderness therapy! (I borrowed the photos in this post from my friend Julie…Julie, I hope you don’t mind!!)

I haven’t sent an update in a while, I think primarily because I’ve been sleeping. Until today that is! Here I am, up at 1:38am again. Yesterday I slept until 5:30am, the day before, 4 something. I’m going to have to learn to write these updates in the daylight if I keep sleeping like I have been. I know! Good problem to have!

But today when I woke feeling fairly rested at 1:38am, it seemed like a good time to get up and write. 

My tiredness seems to come whenever I slow down now. If I sit long enough, no matter what time of day, I get sleepy and can close my eyes to the sweet darkness and drift away. Some days I have to rouse myself or I might sleep all day. It can be a struggle to get up, but when I do, I can be fully engaged and feel great. It’s just that sleep is always there for me now if I want it. What a difference!

Another big difference: my collar. I didn’t wear it at all yesterday! And I went on my longest walk to date! My legs are feeling it, though. I have the soreness that I used to get after all day with a pack on, and now I get it after a three-mile walk. 

My rash is mostly gone now, but I have a nasty infection on both big toes. Again, another side effect of the tagresso. It’s not so painful that I can’t walk, but it’s uncomfortable and preventing me from starting to do some pool sessions, which I’m super eager to do. Our senior center here has a current pool, so will be great for walking. I had my last home-visit from the PT this week, I’ll start seeing a new one as an out-patient next week, that means going to their clinic for session. Hannah, my PT, encouraged me to start playing with a full range of motion in my arms, head, neck, and back….and I think that will be much easier to explore in the pool. My head has more movement, but I have a limited range of motion, so it will be another week or two before I start driving again. I need to be able to turn my head, and right now can only do so for a few inches on either side. My left is a bit more frozen than my right, but that tracks as all my neck and shoulder problems happened on the left side. 

This is as almost normal as I’ve been in six months!

I can’t believe it’s been six months since I hurt myself – no, it’s actually seven! The first tweek of my intercostal muscles happened in early September, I was almost completely incapacitated for October and November, and December was the month of my diagnosis and surgery. In January I started chemo and was in a wheelchair, February was more of the same, and in March, I emerge. April will be more chemo but I will be focused on recovery. 

I haven’t had a scan since early February, so I don’t know if all of this chemo, radiation, and medication is working, but the fact that I’m so much more mobile tells me something is happening. I’m eager to take another scan, maybe at the end of April or early May, and see how much cancer’s butt I kicked. 

Pam gives me great hope. We walked yesterday, and I learned that she just had her one-year since cancer happened anniversary and is doing fablously. We talked on the walk, and the hard truth is that wiith our level of cancer, the kind that was caught late and has spread so far and wide, we will never really be in the clear. There is always the chance it will start growing again. What we have, though, is a mandate to live as cleanly and in tune with our bodies as we can. We will always need periodic scans for the rest of our lives, but she helped me see that instead of fearing the the scans, and fearing that they will show the cancer has come back, we can choose to see them as early warning signs, an early warning sign to start treatment at a much earlier stage than we experienced the first time around. It’s easier to treat if you find it early, and with scans every three months, that will likely be the case. 

It’s also true that we have to accept a shortened life span….that our lives will most likely be shorter than if we hadn’t had our cancer turn on. I’m not sure yet how to process that. I choose to believe that I might live until 80 instead of 90. That it won’t be short as in soon short. We basically take our targeted cancer meds (tagresso for me) until it stops working. A few months? A year? 10 years? And then we take a different med for as long as that works, and so on. At least both of us have other meds to take. Pam’s mutation is different than mine, but she has something to fall back on should the med she is currently taking stop working.

She mentioned that the book, A Year to Live, has been helpful to read, and I will probably order it soon. I think this is a book for all of you, too. It “teaches us how to live each moment, each hour, each day mindfully–as if it were all that was left. On his deathbed, Socrates exhorted his followers to practice dying as the highest form of wisdom. Levine decided to live this way himself for a whole year, and now he shares with us how such immediacy radically changes our view of the world and forces us to examine our priorities. Most of us go to extraordinary lengths to ignore, laugh off, or deny the fact that we are going to die, but preparing for death is one of the most rational and rewarding acts of a lifetime. It is an exercise that gives us the opportunity to deal with unfinished business and enter into a new and vibrant relationship with life. Levine provides us with a year-long program of intensely practical strategies and powerful guided meditations to help with this work, so that whenever the ultimate moment does arrive for each of us, we will not feel that it has come too soon.” 

What would happen to the world if we all examined our priorities and lived carpe diem? Lived each day to its fullest? If we were grateful for every day and the people in it? I know we would live in a different world. Maybe a kinder one?

All of this brings to mind wilderness therapy. Many parents who sent their children to us in a wilderness therapy program thought they might lose them, that without an extreme intervention like spending months in the desert, that their child might be gone, gone to depression, suicide, drugs, violence, hate, bad decisions… With such an extreme change of surroundings, that they may come to value life again.

And I think it works. Many people ask me if wilderness therapy works, and I think yes. Of course there are bad players and stories in the media about programs that mistreated the students and such, but that was not my experience. I think for every story of bad, there are 10, maybe 100 stories of good. I am still quite connected to my fellow wilderness therapy cohorts from 17 years ago. Wilderness therapy is what brought me to Bend after all, and in fact, it was my PCT friend Jack who encouraged me to think about it as a career option. He had started working for the company, Second Nature, in Utah, and when I was done with my trail crew year in Colorado in 2007, I returned to Portland (to my metal roofing winter) and applied to the Second Nature program based in Central Oregon. 

Before I was offered a job, though, I had to go through a week of training and learn all about the program as if I was a student. If that doesn’t cultivate empathy for what a student will go through, I don’t know what will. I did my week of training in January of 2008 with three feet of snow on the ground. Talk about extremes! We had to hike through the snow (there was so much that we had to modify our original plans…there was just too much to hike to our usual spots in the desert), sleep under tarps, learn to bow-drill to have a fire, and were immersed in the world of using wilderness as an intervention in a kid’s life. After all, nature is the best teacher.

I survived our week of training in the snow and was offered the job. I returned in April to officially move to Bend, and fortunately ended up in a house filled with current and former Second Nature staff. My first years in Bend and in that house were fantastic. I lived between downtown and the Old Mill (the same neighborhood where I currently live), and my housemates were the best kind of people. Many of the women I lived with had finished their time with Second Nature and knew exactly what I was going through. Others were still working there but on opposite shifts from me. Second Nature split the staff into two different shifts. Our schedule started on a Tuesday, and we would work 8 days on, 6 days off. So I would go into work on a Tuesday morning (when I moved to Bend I didn’t have a car so would bike to base, often on studded bike tires if it was snowy) where we would receive training about some element of therapy, and then drive out to the field. The field was in the high desert…not too far from parts of the Oregon Desert Trail in fact! I was living in the desert before it was my job to usher hikers through the desert. Oregon’s desert features heavily in my life. When we arrived from our hour and a half drive, we met our groups of students (there were usually 3-4 different groups) and transitioned with the staff from the other shift. When we came in, we brought the staff treats, and they eagerly hovered around staff tree and stuffed down bagels with salmon and cream cheese, (that was a commen eighth-day treat…and wow does it taste good after a solid diet of rice and beans for a week!)

We would circle up and learn about how the previous week went, and then last week’s staff would be off for their week of freedom, and we would dig into the week with our group.

Like I said before, many of the kids were there because their lives weren’t working at home and their parents feared for them. Feared they might not be around much longer unless something extreme happened, and the Oregon desert was quite extreme. Some had never camped before, some had never seen snow before. Our program was year-round, so even in the coldest of cold, we were out there camping with our students. Of course, there were protocols for things like extreme cold and extreme heat, and all the students had to be medically cleared to come into the program. We were very vigilant of safety and health concerns and spent alot of time on health checks while we were there. A nurse would come out to the field every week, and we were trained to pay attention to any little thing (this is where the Wilderness First Responder training came into play). Each student was assigned a therapist, and what I thought was the great thing about our program was that the student’s parents were also in therapy with the same therapist every week. As field staff, we would help implement the therapy assignments for the week and overall just acted as solid role models – using appropriate communication and conflict mitigation techniques. We were on 24/7 for 8 days. We had to be the role model staff and keep our cool even when the students were not on their best behaviour.

Nature was the intervention, and love of nature and hiking, and spending time outside was what I brought to my groups. We hiked a lot in the program; we hiked most days, and the students who were farthest along in the program learned to navigate with map and compass and we had them lead the hikes. Bow drilling was a core feature in our program, and when a student came in, much of their time was focused on learning how to bow-drill. We would harvest our bow drill sets from the desert, juniper branches made good bows, and the sage made great spindles, fire boards, and nests to blow our embers into flame. Of course, we as staff had to be able to bow drill and teach the students the craft, and often the frustration of learning to make fire was a good way to learn how a student dealt with hard things and then we processed those emotions together.  I had my own outbursts when I was learning, and it took weeks and weeks before I could confidently make fire on demand, and wow, that feeling when you could…it was powerful!

I won’t go into many other details as there were certain confidentiality pieces to the job, but I did see change in the kids. They would spend months with us, usually 3 months, and slowly and surely they would go from seeing the desert as a prison to seeing the desert as a living place of wonder. I would smile when they would draw our attention to the sunset, chuckle when we saw a mountain blue-bird hovering over the sagebrush only to dive into it to catch a snack, and beam with pride when a student led us with map and compass to a far-away camp – all cross country hiking in the juniper and sagebrush sea. We usually didn’t know what happened to our students when they finished our program. Often, wilderness therapy was just one step in their journey towards a healthy adult life, and they needed to focus on the next step, and we needed to focus on the new students. 

But I don’t think I will ever have a more stressful and difficult job than wilderness therapy. Nothing could be harder than being in charge of 10 students for a week, being in charge of their mental and physical well-being in the middle of the desert. I would return home absolutely drained (after having devoured our bagels with salmon and cream cheese at staff tree) to just collapse in the shower and wash a week of dirt and campfire off (it was often a bower = beer in the shower, for ultimate reintegration). I would collapse just long enough to change and go out for beers with the rest of my team to process the week, eat good food, and tell stories from the week. Wilderness therapy was another very intense experience, much like Peace Corps and thru-hiking…and very bonding. Like I said, many of the other staff I worked with are still friends today, and we all marvel at the shenanigans and wild stories from our time out there. Like the tree that was hit by lightening in camp, or the coyote that pooped on our food drop; the intense cold we would have to endure in the winter, or the endless games of dogs (hacky sack) we played in the dirt. Those were some great times, some trying times, some exhilarating times, and I lasted two years. The average span of a field staff in a wilderness therapy program at the time was 6 months, and I lasted two years. I went on to work for the publishing company in town next, and even when I was at my busiest and cranking out a 40-page art magazine a month, it was never more stressful than dealing with a sick student at midnight in the desert. There can never be anything more stressful than being in charge of a person’s life, it just didn’t compare.

Our packs were so heavy too! Look at those danglies!

I became a better person because of wilderness therapy. All the communication techniques and sessions on manipulation and processing emotions worked on me, too. I had to take a hard look at myself during this time, especially when trying to teach others about these things, and then role model those techniques for an entire week, every other week, for years. Sure, I’m definitely not perfect, but I’m more aware now. So much more aware.

To all my wilderness therapy friends out there reading this, thank you for making my first few years in Bend so memorable, so impactful, and so amazing. It wasn’t always enjoyable, it wasn’t always pretty, but it was always so much fun to be in the desert with you. 

My usual routine

I woke again about midnight. I haven’t been staying in bed until 3am like I promised all of you a while ago. Oops. Instead, I keep getting up and reveling in the quiet early morning hours to read, write, drink my coffee, and enjoy the quiet. I just like it, ok?

But my new med makes me quite tired during the day. I’ve struggled to keep my eyes open even when visiting with friends, and the extra napping is probably compounded by the short nights. That has been the main side-effect of my new mutation med so far, sleepiness.

This morning I was scrolling on Instagram when I decided to post a TBT image. TBT, you know “Throw back Tuesday” where you post a memory photo.

Then I started reading my blog posts from the Owyhee packraft trip and remembered that my favorite place to write isn’t at 2am at home when I can’t sleep from the cancer in my bones, it’s writing at 4am in my tent or spread-out cowboy-camping style on my tyvek when I’m hiking.

My tradition since starting to blog on my hikes many years ago is to write every day. Get up in the dark, make my coffee, and write. Write for hours even! This is the beauty of solo hiking too; I don’t have to work around anyone else’s schedule, I don’t have to keep quiet so I don’t wake them up, I don’t have to start walking before I’m ready, I can write and nap, and make a second cup of coffee, and write some more, and eat breakfast, and then hike out when I’m ready.

If you browse back through some of the many adventures that I chronicle on this blog, the routine is the same. I write every morning. That is my jam. That is my happy place. To be alone in nature, writing as the day breaks. I know I’ll get back there, I know it in my bones, so I have that to look forward to. This writing at home is the abnormal part. This writing at home is a placeholder for me in the dark in my tent.

So, instead of recapping this incredible adventure of packrafting a 175 miles of the Owyhee River as a water alternate to the hiking route, I’ll just link to my blog posts here for you. This trip did a great job of encapsulating what I love most about adventures….the going out and not knowing if something can be done, but trying anyway. I didn’t know if one could packraft the Owyhee river in July at 135 cfs, but I wanted to find out, so tried. That is true adventure, and the kinds of adventure I hope to get back to…and by going solo I have learned to rely on myself. I have learned to trust my instincts, trust my training, and trust the world to get me through.

I trust the world to get me through this cancer too.

So here are the posts from my 2-week Owyhee solo packraft trip. Enjoy!

Read about my full Oregon Desert Trail section hike here. (I was the 10th person to complete the route after getting the job to establish it the year before. I had to hike it to know what I needed!)

The end!