Update: the story map doesn’t work on ohines now (or at least my android). Why does tech need to get obsolete so fast???? 😖.

Speaking of the Oregon Coast Trail (see my recent post), some of you who have been with me for years will remember the story map I built in the painful wake of my first injuries and prior to my cancer diagnosis.

In October of 2024, 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 would embark on a pretend journey and imagine 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.

This creative endeavor was my attempt at keeping sane in the new insanity of my body…and you can see that as the days progress in the story map.

My process that month was 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 the virtual hike into a visual journey as well, so I created the story map by publishing each new day on the platform as I would on an actual thru-hike. The Oregon Coast Trail is a logistical mélange of hazards like high tides, which make certain sections un-doable, 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.

By the second week, my creative act had become 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, and I finished the project on October 31, 2024 to mirror when I would have finished in real time.

Because the story map software is constantly undergoing changes, I’m not sure how long this project will be available (the version I used to create this has already been discontinued), so check it out if you are interested:

And here is another story map I’m particularly proud of:

Maybe I’ll make a story map of all my hiking stories too?? The possibilities are endless!

At times I forget that I’m not the center of the universe. 

I went to see my oncologist a few weeks ago, part of my routine three-month scan and blood test check-in, and welcomed the news that I was still cancer-free. Whew. But when we started discussing my ongoing pain struggles, I sadly explained that I had put a lot of hope into a nerve-block procedure to dull or eliminate said pain, to no result.

Well, she took action! She ordered a rush neck MRI, and that same week I went into the clicking and whirring tube, happy to be there again. I was incredibly grateful for her sense of urgency in helping me find a solution: maybe it was the return of my cancer that other tests hadn’t picked up? Maybe it was time to get more radiation on my spine? Maybe another surgery could help? I had an appointment to see the neuro surgeon shortly after the new MRI, so I reveled in the thought that answers would be coming. There might be a way out. There might be a solution.

I had hope again.

Note: prior to the oncology appointment and after my last blog post, I visited my non-surgical spine specialist who had given me the (failed) nerve block, only to hear him say there were no other interventions he could try. In his opinion, another spinal fusion was the next step. 

I visited several of my other practitioners, and although they are not surgeons, they have been on this spinal damage journey with me long enough to also chime in: their interventions could only go so far. Massage, acupuncture, Feldenkrais, and PT all helped me deal with the pain and get some mobility back, but they didn’t address the root cause of it: my damaged C7, T1, and T3. They also mused that surgery could be my best bet. 

Ok! I’m ready. Lets get some surgery! I would clear my summer, I would make room for months in a neck brace again, I was ready for the immobility if it meant I could move forward once more.

Then the neuro surgeon appointment was rescheduled. To June. A full month after I expected to get some answers, and some action. 

I was angry. I was indignant. 

Over the next few hours, my emotions oscillated from:

• Anger: My oncologist wanted this done asap!
• Victimization: Doesn’t he know I’m in pain!
• Justification: I’ve been in this state of uncertainty for months now!
• Rationalization: Maybe he had a more critical surgical case, and that’s why I got bumped? 
• Acceptance: Ok, maybe I’m not the most important patient, especially as my pain is controlled by meds now.
• Sadness: Maybe I’ll feel like this forever.
• Redirection: Think about anything else. Dance in the kitchen. Think about the start of your PCT thru-hike 20 years ago this week.
• Reminiscing: The PCT was one of the most powerful experiences of my life. The 2006 thru-hikers are having a 20-year reunion at PCT Days this August! I love those hikers. 
• Imagining: I want to hike the PCT again. I will hike the PCT again.
• Resolve: I will advocate for my needs and desires. I will impart to that surgeon that a quality of life is everything to me now.

I’m trying to be an adult and regulate my emotions, but it’s hard!!!

I made a list of all the things I would like to be able to do again, you know, to help with the resolve part:

• Stand up without pain
• Drink a glass of wine (alcohol is a no-no now that I’m on a higher dose of gabapentin)
• Drive on a gravel road
• Ride a bike
• Practice yoga
• Paddle on a lake
• Thru-hike!

I want a quality of life. Am I greedy for wanting to do more? Of course, I’m grateful to be alive and walking, but can I have more? Doctors have suggested that more is a possibility, so now I want it. I want it ferociously.

Then the results from the MRI came in: nothing had changed from the January scan. 

Part of me was disappointed. A cause for my increased pain wasn’t showing up. It was real, right? I decided to test it and delayed my next set of pain meds, and poof! There it is again. Yes, the pain is real. (Note: the MRI is still bad, the January one showed a whole mess in there). 

It became clear to me that I would need to convince the surgeon (who said everything was stable in January – that my damage is a stable damage) that I needed surgery. That I couldn’t function properly. That I was already living like I had a spinal fusion, and in fact I might be able to do more with another fusion. Please operate on me!

So I’m left in a gray fog of uncertainty again until June, but I’m still having some good times. Those moments of sunshine are worthy of some mention here, too!

Kirk and I spent eight days on the John Day River with our friend Lorraine a couple weeks ago. We had wonderful weather with just one day of rain on our layover day. I wore my neck brace most days in the boat because I couldn’t help but crane my neck in every direction to look at the amazing geology and plentiful big-horned sheep we saw along the way:

And then I took a fun quick visit to see my Aunt Barbara in San Francisco last week. We took a boat tour under the Golden Gate Bridge, ate Ghirardelli sundaes, walked around the beautiful Stanford campus, watercolored in the park, and smelled the roses:

And I keep on.

Wow.

Yes, John, Yes.

I never met John Waller, but we were both guides for Joe Whittington at Oregon Peak Adventures back in my Portland and early Bend days.

I remember John more specifically because he took some stunning photos of Steens Mountain Wilderness for ONDA. I can’t seem to find any of those pics online, but they were amazing: golden fall scenes, a dusting of snow in the upper reaches of Big Indian Gorge, and hikers, strolling down the trail (the Oregon Desert Trail that is!).

I sensed he was a fellow adventurer: always seeking the next experience, leading from a place of curiosity.

I vaguely remember he was diagnosed with stage 4 cancer a few years ago, but it wasn’t until I thought to look him up recently that I learned more about his life, and found this TEDx talk (give yourself 20 minutes).

The presentation he gave feels like the outline of something taken directly from my brain, however, he has also marinated in the mortality of life in a deeper way than I have…and there are several aspects of his journey I haven’t explored yet.

His words are so simple, but so true:

I’m here. Right now. Talking with you. What a gift this is.

John has since passed.