In the last week, I had a PET Scan that surveyed my neck down for cancer, a Brain MRI to look for changes from my last scan, and lab work. And they were clear! Clear of cancer I mean. There are still tumors (masses of dead cells), there is still damage to my spine, and there is still abnormal labwork, but it’s abnormal in the ways it has been abnormal for the last year, so in essence, normal for me.
Am I relieved? Of course! So relieved!
Am I back to my optimistic, positive, pollyanna self? Well…I seem to need to sit with this news for a while, and it’s not like you just bounce back from thinking the cancer is growing again…there is the whole “well, why has my pain been increasing” question. And I have to accept that there will always be pain, that managing it is my new reality, and that some of it could have been stress-related from the PTSD over the last year.
So friends, all this means I have another 6-month lease on life!
So, I pulled the trigger on some more trips. In fact, there are still a few openings for a yoga and writing retreat in March with Anish if any of you are interested.
I had intended to write this post yesterday after all the test results had come in, but it turns out I needed a day.
I woke up like normal, drank my coffee with mushroom powders, and picked up and finished The Word for the World is Forest by Ursula K. Le Guin. When looking for the next book to read, I surveyed the shelves filled with cancer-related books, and just had to stop.
So if I’m not going to die yet of cancer yet, I’m going to go read about cancer and dying? No. Not today.
Cancer just hijacks your life. Especially with the chronic pain I’m experiencing now, well into remission. There is not a day that I’m not reminded that I could die soon, or not. Could be 1 year, maybe 5, maybe even 15! Good luck NOT thinking about that every day.
I needed a day to marinate in it, and I gave myself a 100% unstructured, uncommitted day yesterday, where I only tried to ride the wave of existence, knowing I don’t have an active cancer, and If that doesn’t elicit joy, then what are we even doing here?
I took a walk. This week I haven’t been doing yoga, in fact, I haven’t done yoga in about a month…the fears and all, but I have been going on walks: early morning walks before the sun is even up. I talk walks in the icy morning, stepping gingerly down the road with my yak tracks on, knowing my spine is like a pretzel stick, brittle and prone to breaking when it falls to the floor.
Yesterday I went walking just after sunrise and was rewarded with light and color. It was one of the first days in Bend with a dusting of snow on the ground, and even though the paths were treacherous with ice, it was so worth it to have those views and that reframe. The day before, darkness; today, I was walking out of the dark.
Can I surf the roller coaster of emotions instead of sink into them?
Ride the wave of being alive today.
Ride the wave of being alive today.
Ride the wave of being alive today. Became my mantra as I gingerly walked the world awake.
Ride the wave of being alive today.
What will 2026 look like now? I have decided I need some more structure to my days, and the many groups that I’ve joined will help in that: writing groups, book clubs, creative freelancing groups, and cancer survivor groups. A renewed commitment to adding more structure to my days may help erect some scaffolding and assist in giving me a way to pull myself out of the listlessness that was December. Periods of time where I explore deep ideas and read a lot. And I’ll continue taking walks, lots of walks. Reading, walking, thinking, writing; I’m kind of designing the perfect life. I can’t adventure as much, but I’m living a version of my life that’s pretty good right now. I know challenging and scary things are around the corner, ready to jump out at me and knock me down. (That goes for all of us. The world is just plain SCARY right now!) But today I’m standing and walking in the light.
For our final 2026 Speaker Series we welcome back a previous speaker, local triple crown thru-hiker Renee “She-ra” Patrick. In late 2024, Renee was diagnosed with advanced cancer that left her in a wheelchair and unable to carry a backpack due to extensive neck and spine damage. Now in remission and walking again, Renee is exploring how to continue hiking and adventuring in a body that has dramatically changed. She successfully completed a 170-mile hike of the Portuguese Camino by using a luggage transport service, and continues to investigate alternative forms of travel so she can continue to find solace and connection in the outdoors.
Join us to re-connect with Renee and explore a topic that so many of us can relate to in our own way, what it looks like to adventure when our body changes.
How am I doing? Let’s see. It’s the last day of 2025. It’s the eve-eve of my next PET scan, or the first PET scan since my cancer has been in remission. I’m not doing well. In a way, my remission has been haunting me, especially fiercely the past month or so.
I’ve been dismal and down in this season of laughter and joy, but I’ve been high too…these emotions rollercoaster through me, sometimes on an hourly basis, where I can be delighted and hopeful, followed by a deep sorrow that drips off me and weighs my body in heaviness.
Ask me to my face, and yes, I’m doing fine, “Grateful to be here!” I reply cheerfully. To a few, I’ll say, “I’m struggling,” like when Kirk comes home to find me in tears and just enfolds me in a big hug. To myself, I say, “What is the point?” I’m finding this listlessness is manifesting in me forgetting to take my meds. I’ll have breakfast or lunch and then realize two hours later that my pillbox is still full. I hurriedly eat a handful of nuts or a spoonful of peanut butter to soften the landing of the gel caps on my stomach lining.
I am haunted. Haunted by what these next few scans will reveal.
If the scans show there are no new growths, then I have to accept that the increasing pain and discomfort I’ve been feeling over the last month is either in my imagination or my body still coming to terms with being irreparably damaged.
If the scans show there are new growths, maybe it’s a relief? Then these next months will be a series of appointments, and I don’t need to think too much. I will just need to go with it and renew my low-sugar, low-processed food habits.
It’s like I’m just now figuring out how to live with this disease, and it’s not going smoothly. I know all the tricks and tools: go for a walk, get coffee with a friend, read a book, go to yoga, tell Kirk and my closest friends the truth, take a bath. And it all works, for a short while. It pulls me up and out of the funk, but now it seems my default state is in the muck when before it was in the air, floating on thermals above the fray.
And there has been joy….really, there has been – islands of happiness, or just plain contentedness.
Christmas with my mom and brother.
Dan and I walking along the Lake Martin swamp where we saw a huge gator sunning himself on a log.
Brooke and Adryon meeting us for dinner and my first sip of a Red Chair beer in a few years.
Carrie giving me a make-over.
Marina having us over for quiche and cheesecake.
Cross country skiing again.
Kirk bought me new cross-country skis with metal edges for Christmas. They are quite a luxury as I have only ever owned garage-sale skis from decades past. We took them out to our favorite snow park the day after I got home from Louisiana; the sun on my face, and the quiet swooshing of the skis in the tracks were a balm to my overthinking brain.
Before we left the parking lot, I couldn’t seem to remember how my ski boots worked. It had only been two years since I had skied last, but it was like I had never worn these boots before. Turns out I had grabbed Kirk’s boots, which I had in fact, never worn before. Ha! I can still laugh at myself. The skiing was good, until it wasn’t. It turns out that I can’t use my left pole, and I can’t go uphill. The pressure of the poles, especially when trying to climb anything, hurts my left shoulder too much. In fact, four days after the last ski, my neck and shoulders are so sore that I’m taking daily pain meds again. Is this cancer? Or is this skiing for the first time in two years?
Keep going. I just have to tell myself to keep going.
Maybe the pressure valve that is questioning my damaged body will be released after these next scans, and then I can keep going. I have a number of things I want to do in the new year, but am waiting for these scans to make any plans… I want to be grateful, but I am not sure how to feel most days. Sometimes my morning walk will be enough to trick my brain into being hopeful, and I come home and make my smoothie of broccoli sprouts, spinach, ginger root, flax, chia, hemp seeds, nuts, and strawberries, but sometimes the hope masks itself in feeling normal and takes me to the bakery where I stand in line for something sweet.
I investigate other hiking options: llamas! I could hike with llamas! Or do a car-supported hike, as many people do on long trails when they meet friends or family at road crossings, the car filled with camping gear, water, and food. Or I could do another Camino – I’ve already started outlining what the Camino Ingles would look like. Or tap the friends who said the would sherpa for me. Oh, and then there are the carts. I asked Reddit about hiking with carts, and after a lot of “you’re stupid for asking that question,” I got a few helpful replies, but ultimately I think carts work best on pavement, and that’s not the kind of hiking I’m hoping to do right now.
Is this clinging to hiking an unwillingness to give up the last 24 years of my life when hiking was my all and everything? Probably. I was one of those lucky few who found what lit them up inside, who found what I wanted to do for the rest of my life, who found true freedom and purpose in a life lived on trail. I’m not quite willing to give that up, which may be, or probably is, at the root of my despair.
There are many disabled folks who continue to hike: Bill Irwin hiked blind. Wheelchair Bob is out on the PCT all the time, and a local friend, Geoff Babb, even invented the Advenchair, an all-terrain wheelchair, so he could still get around after his stroke. Hiking with a disability takes more time and more effort, but it’s possible. It’s possible. It’s possible.
Oh, the effort though. I’m getting caught up in the effort of doing all the “right” things to help mitigate my body feeling like a 500-pound elephant sinking into the sea. A part of me knows I will get through this, and may even return to my resting disposition in the clouds. A part of me knows letting myself feel the feelings may be the only way through, and a part of me needs to keep finding the effort that leads to small joys.
This isn’t a cry for help, I’ve done that already. This is an effort to be real with you about those “How am I doing?” questions.
I guess the next update will be in the aftermath of my PET scan, brain MRI, and labs. I’ll be a completely different person then.
In happier times…just a few days ago in fact! At the ONDA Christmas party with Phyllisand Mary, two amazing women.
I’m so tired. Maybe it’s the ghost of the impending anniversaries from December 2024 and learning the truth about my injuries, but what’s my excuse this year? I’m discombobulated. I’m depressed. I’m in pain, and I’m grieving for something. I think it’s for who I used to be.
Yesterday I sunk into the depths of a dispair that I didn’t know existed, but today I woke up determined to have a better day. That looks like standing up without bracing for the rushing pain of low blood pressure in my head and shoulders, and instead slowly moving through it, anticipating the other side of the dizzyness, not getting derailed by the dizziness. That looks like leaving the house to write at a coffee shop where I can type these sentences with the accountability of being a human in public.
I don’t yet have the words to explain why I dip into these deep chasms of weeping, but when I try to understand, when I type out the sentiment behind the feeling, I can at least distance myself from it enough to see it a bit more objectively. That perspective takes on more weight as I circle around and around the idea of writing a book about my cancer experience. “Write from the scar, not the wound,” author Cheri Kephart said in her workshop, and that makes sense for a book. My book will be written from the scar, but this blog is written from the wound. From the bloody front lines of a life torn apart and knitting itself back together. At times I think I’m healing and toughing up, but yesterday reveals that I’m still raw and bleeding. The wound is tender and sore.
Bits from this blog may end up in the book, but I imagine the book will look back on this experience from a larger scale (hello fractal, my old friend). It will be putting all the pieces back together as a work of art, with thought and craft and structure… but now I’m still discovering what the pieces are, and what shapes they take. Writing here is sometimes messy, unshaped, uneven, and scattered, but it’s helping me find the pieces far faster than if I were stewing in this malaise and pain without getting it out into the open and letting it breathe. Writing from the wound is completely appropriate to this phase where I’m trying to make sense of what it means to almost die, to get a second chance at life, to confront my limitations in this new body, all within the context of losing my Dad just a few months ago.
Saw this on Substack and thought it appropriate, is depressed almost the same as stressed? In dessert speak, that is.
In a way, remission has been harder than treatment. At least during the treatment phase, I had a reason for being tired all the time, I had an excuse for staying in bed and not answering my emails. But after? Maybe it’s the scanxiety (the anxiety of the cancer coming back…all to be revealed in my next scans in early January, and every three months after…for the rest of my life) or it could be PTSD from my close brush with death a year ago. Or maybe there is no reason, and it’s just one big pile of shit that threatens to suffocate me each day.
Some days I don’t feel better, and wonder, is this the new normal? Now I’m starting to understand why people give up, why they don’t want to be alive with cancer anymore. But just thinking that thought scares me into thinking that thought will invite it back. If our minds are that powerful, can thinking about it coming back open the door? (proceeds to tear hair out)
Writing here has been such a lifeline; that’s a reason not to tear my hair out. Fun fact: my hair was thinning during the chemo process, but now it’s growing back, and in certain mirrors I catch a glimpse of myself with 2 inch hairs standing up from my part line; it does make me giggle (actually, you can see it in the photo above!). Through writing, I’ve been in conversation with myself and with you, and these connections have been everything. I’m sending out holiday cards this year, and it’s truly overwhelming. I look at the list of people who donated to my go fund me, who sent cards and care packages, who dropped off meals and stopped by for a visit, and there is not enough stationery or stamps to write enough cards. Hundreds of you came through for me this year, and even if you don’t get a card in the mail, please know how important you were and are to me. I’m so rich in friendship, true connection, and love that I know none of this has to be faced alone, even when I feel alone.
So let’s end this blog post on a high note. Thank you for listening. Even if it feels like I am screaming into the void, I know you are listening and care. That helps so much.
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.
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”.
I’ve been home from the Camino for about three weeks now, longer than I was away on the walk, but time did that sneaky thing again, and months of life seemed to happen in 18 days. Time distorts when you step away from your normal routine. It extends your life. And I find that returning from travel helps me find comfort in my daily habits and favorite things – like the hot mug of green tea I bring into the office for my morning writing sesh while snuggling into the blanket that has a little foot pocket to warm my feet. Going away helps reorder life when you get home.
Just what have I been up to these past three weeks, other than rearranging everything to live the life of a writer? Well, doctors’ appointments, of course. It takes a lot of work to monitor and heal from this incurable disease. Note: many of the people I’ve known who have passed from cancer did so within a year of their initial diagnosis. I’m almost at month 10…and continue to feel I will be in the minority.
So, in the spirit of oversharing…here are all the details. Since getting home, I’ve had:
An appointment to replace my metal nose ring with a glass one, so it wouldn’t interfere with my brain MRI the next day
Metal rings in noses are an issue for MRI machines. Did you hear about the guy who died when his large metal necklace dragged him into an MRI room? Kirk can’t have an MRI because he’s been a metal worker for so long that a small piece might be embedded in his body, and could get ripped out when he approaches the big magnet. Yikes! Anyway, I ordered a nose ring that will be easier to remove for future scans because the one I have now is a full circle of metal with a ball on one end. To remove it, I need to twist it open enough to pop one end of the post from the ball and then pull the ring apart to make an opening big enough to twist it through my nostril. That hurts. And I couldn’t get the loop closed when putting it back in after the MRI because my fingernails are now breaking, and even a slight bump will cause fractures and splits. I understand this is because they have finally grown out to reveal the effect chemo left on my body nine months ago. Also, Tegresso, my daily cancer med, can cause weak nails as one of the side effects.
A brain MRI
A motorized tray slid me into a circle of magnets the day after I got home. Usually, I see test results the same day in My Chart, and when I get them, I am often tempted to type words or phrases that I don’t understand into a search engine (as you already know from this section: Interpreting a My-Chart test result in the middle of the night with no doctor supervision). But when I finally did get the results, there wasn’t anything to worry about because the tumors are still shrinking. THE TUMORS ARE STILL SHRINKING!!!
Labs
The day before every appointment with my oncologist, Dr. Tiffany, I have labs drawn. My neutrophils absolute and hemoglobin are monitored, and we have a sharp eye on my platelet levels. Another of Tegresso’s side effects is low white blood cell and platelet counts. That means I’m more susceptible to infections. This time, most of my numbers were similar to previous labs, but my liver enzymes were up, which I attribute to all the wine I drank in Spain. No one is worried, though. I brought up the results with several of my doctors, and all thought the health benefits of drinking wine in Spain while I walked 170 miles outweighed the negatives; plus the numbers are still on the low side of high. So these results have been placed in the “don’t worry” column of “bad things that might happen.”
A trip to the gynecologist
Since my body got nuked with chemo and radiation at the start of the year, I haven’t had a period, and was quite perimenopausal before (think hot flashes and brain fog). I had my hormone levels tested a few months back, and found numbers hovering around non-existent. My doc prescribed progesterone and estrogen (both in a patch and cream form), and the change was dramatic. No more hot flashes, a clearer brain, softer skin, and as I described it one day on the Camino, it felt like my body was waking up, that I was coming alive again.
My first Zometa infusion
Since I had so many tumors along my vertebrae from neck to pelvis and femur, I am at risk for fractures. The swiss cheese effect of the hungry cancer put me in a wheelchair until radiation could harden some of the bones that would keep me walking, particularly in my pelvis. But good news: the bone is slowly growing back now. The bad news: combined with the osteoporosis risk of menopause, I still have a fracture risk. Fortunately, the hormones that work for hot flashes also work to strengthen bones.
Now Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent fractures. Since my chemo port was removed in August, I’ll get my infusion the old-fashioned way – needles and tubes in my arm. Every three months I will head up to the transfusion room at St. Charles Hospital to get a vein poked while looking at the Cascade Mountains. Back in the day when I worked at the art magazine in town, I made one of the first tours of this facility when it opened…it was state-of-the-art, and hosted works of many local artists. I never imagined I’d be back a decade later to sit in one of those chairs.
Dental clearance prior to taking Zometa is needed as one of the nasty side effects could be bone loss in the jaw, and those of us who have been treated with chemotherapy, radiation, or steroids might be more likely to develop it. I got the dental clearance a few months ago, and I’ll be flossing regularly, thank you very much!
A massage
My neck continues to struggle holding my head in the right position. I especially feel it on walks and at the end of the day. I expect my muscles tightened when I got home and sat down more than I moved, so when the massage therapist found a lot of knots under my shoulder blades, I was grateful for the release.
An appointment with my naturopathic oncologist
During my check-in with Dr. Neubauer, we discussed ramping up the dosage in my mistletoe injections…the goal is to have a 1” rash at the injection site most of the time. And if you don’t remember from one of my previous posts, mistletoe has a host of beneficial effects, like helping the immune system recognize and destroy the cancer by activating tumor-killing cells such as macrophages, dendritic cells and natural killer cells.
One of Dr. Newbaurer’s suggestions this time was to increase to my calcium citrate each day. More calcium will offset a loss when the Zometa draws the mineral from my blood to deposit it in my bones.
And now that my body is in a stable state, she wanted me to get another set of labs to measure the levels of copper and zinc in my blood. An imbalance can cause tumor growth.
More labs to measure copper and zinc
Results pending.
A visit to my palliative care doctor
Dr. Blechman is wonderful. This woman was the first doctor I could get an appointment with after returning from Louisiana and my emergency surgery after diagnosis. She immediately saw the urgency in getting me in to see an oncologist, so much so that she walked down the hall, had a few words, and I was talking with Dr. Schmit a short while later…chemo started the next day. Dr. Blechman has my back; they both did. One of the first things she shared with me when we met last week was that she, too, went on a Camino-style hike in Italy this summer. Complete with hotels and cafes and luggage transport… and she thought of me and my Camino. I expressed my gratitude to her, and we shared a few tears of joy. My pain is very manageable right now, and I’m at such a steady place that we agreed our appointments from now on would be TBD. Magic.
A trip to see my oncologist
I had a smooth transition from Dr. Schmidt’s care to Dr. Tiffany this summer when the cancer wing at Summit Health closed down, and Dr. Tiffany has been nothing but supportive of my recent activities. At the appointment, we reviewed my labs and brain MRI, talked about Zometa, and covered a few various other small issues I’ve been having. All signs point to stability, so I am moving from monthly labs to an every three month schedule along with my scans. Winning!
A physical therapy appointment
Melissa Carlton is supportive and gentle. She works on my shoulders, back, and legs – stretching, assessing, and determining how to best address my current aches and pains. Right now, that looks like a sore and tight lower back. Melissa reminded me that I had weeks of daily radiation pointed at that part of my body, so the stiffening is not surprising, and wearing a lumbar pack for two and a half weeks probably helped set it off. The discomfort is bearable, but it also feels like a spring that’s loaded and ready to pop, so the strategy is to strengthen my core, use topical creams like magnesium at night to soothe it, and add in hot epsom salt baths and heating pads during the day. Melissa also wants me to try wearing a light backpack to see if a little weight on my shoulders might help both my posture and my lower back. Lets do it!
An acupuncture appointment
The lower back work continued with my acupuncturist, Kym Garrett. Again, a knowledgeable, compassionate, and supportive practitioner that I’ve been seeing since early this year. This time, Kym used her needles to help ease my lower back and shoulder tightness and suggested other methods of anti-inflammation. I know I need to eat less inflammatory foods… I’ve slowly slipped sugar and refined flours back into my diet lately (mostly in the form of pastries and breads), so I want to cut back. I’m still taking so many pills that I don’t want to add another unless absolutely necessary (see below). Ahhh, I still remember the days when I didn’t take any. Most of my life, I’ve never needed to take any medication, so this new reality is still an adjustment. My daily pillbox now carries 17 gelcaps and tablets that I take spread out between morning, noon, and night. Yikes.
A neurosurgery appointment
I’ve been seeing Dr. Tien for follow-ups on my neck surgery, and because it can take such a long time to heal (and I still have a collapsed vertebrae) he wants to continue to see me every three months or so. Usually, I have an x-ray done so he can see how the screws and mesh are doing in my neck, but since I had the brain MRI recently, he was able to reference that and didn’t have any concerns, in fact he was quite impressed with how my body is healing. Good job neck 🙌
So what medications am I taking in this maintenance phase? Things keep changing as my body is changing, so this list of drugs is a snapshot in time.
I’m taking 17 pills a day, and then there are also shots, powders, and creams.
Mistletoe
According to the National Cancer Institute, mistletoe is one of the most widely studied complementary and alternative medicine therapies for cancer. In certain European countries, extracts made from mistletoe are among the most prescribed therapies for cancer patients. (This is a Dr. Newbauer-prescribed medication)
I give myself an injection of mistletoe on Mondays, Wednesdays, and Fridays, and I’ve been slowly ratcheting up the dose so I get an immune system reaction of a 1” rash at the injection site. So far, I have no other side effects other than the lack of active tumors.
Estrogen
One of my hormone vectors is an estradiol patch that I replace twice a week. I place these small, clear disks of sticky below the belt, alternating between my left side and the right.
The other estrogen product is a cream that I use nightly on my lady parts.
Magnesium
I apply a magnesium cream on my lower back every other evening before bed to help it relax during the night.
Astragulus
I take powdered astragulus mixed in water every day. This tonic helps my bone marrow, blood counts, kidney support, and has shown increased survival in clinical trials. (A Dr. Neubauer medication)
Mushroom powders
I put a powdered turkey tail and reishi mushroom mix into my coffee in the mornings (Note: only one cup of coffee most days). Turkey Tail mushrooms are known for their high levels of beta-glucans—compounds studied for their ability to help maintain a healthy immune system, and the benefits of reishi mushrooms are listed as: supports immune health and resilience, supports mood and emotional well-being, promotes restful sleep and relaxation, supports energy, vitality, and healthy aging, helps maintain general wellness and resilience to stress, promotes cardiovascular and circulatory health and helps maintain healthy blood sugar metabolism. Of course, these benefits are from a label, but these mushrooms are Dr. Neubauer-approved. Note: next time she wants me to buy the 5 Defenders brand due to its 100% hot water-extracted process. The hot water method ensures that the powder contains more than 20% beta-glucans, which are known for their immune-supporting properties, and it unlocks the full spectrum of beneficial compounds.
Nail polish
To help harden my nails from the chemo and cancer med side-effects, I’m now using a clear strengthening polish.
Now for the pills:
Keppra
Since I had a few seizures earlier this year, I’ve been put on this anti-epileptic drug. I have been thinking of coming off of it, and when I do so, I’ll need to avoid driving for three months because the lack of keppra can also cause seizures (ironic!). But I still have a couple of tumors around my brain – they are shrinking, so I’m not sure if/when I’ll start the tapering process. After meeting with Dr. Tien he said it was too early to stop taking the drug, and I’d need to be referred to a neurologist for further consultation.
Calcium citrate
As explained before, I increased my calcium intake recently from 600mg to 1200 due to my Zometa infusions. Calcium can help maintain bone density and prevent osteoporosis, and it also plays a role in muscle function, blood vessel contraction, blood clotting, nerve transmission, and hormone secretion.
Vitamin D3
In experimental studies of cancer cells and of tumors in rodents, vitamin D has been found to have several biological activities that might slow or prevent the development of cancer, including promoting cellular differentiation, decreasing cancer cell growth, stimulating cell death, reducing tumor blood vessel formation, and decreasing tumor progression and metastasis. Vitamin D was also found to suppress a type of immune cell that normally prevents the immune system from responding strongly to cancer (source).
Peak K2
I take this with every meal, as it is shown to support the activation of bone-building cells, is involved in calcium distribution to bone, and promotes normal blood clotting and vascular health. (A Dr. Neubauer medication)
Tegresso
This is my daily cancer med that I’ll take for the rest of my life (or as long as it works). It is used to treat adults with non-small cell lung cancer whose tumors have a certain abnormal epidermal growth factor receptor – that’s my mutation of EGFR19. It is used to help prevent my lung cancer from coming back, especially metastatic cancer…meaning it has spread far and wide across my body. Some people become immune to Tegresso after a few months or a few years, while others have stayed on it for a decade. We’ll see how long it lasts for me. Tagrisso works by targeting the EGFR receptor, specifically the T790M mutation that blocks the signaling of EGFR, which suppresses cell growth and induces programmed cell death in cancer cells with these specific mutations. Tagrisso is considered a targeted treatment and is not chemotherapy, but it works well with chemotherapy, like the rounds of pemetrexed and carboplatin that I had earlier this year.
Boswellia
Boswellia serrata has been used in traditional medicine for centuries, particularly in Ayurvedic practices. Its active compounds, particularly boswellic acids, are believed to contribute to its therapeutic effects, including anti-inflammatory and anticancer properties. (A Dr. Neubauer medication)
Magnesium glycinate
Magnesium glycinate is formed by combining elemental magnesium with the amino acid glycine. This form of magnesium is highly bioavailable, meaning the magnesium is easily absorbed through your small intestine. It can promote bone health, help regulate blood sugar, help maintain regular heart rhythms, amplify exercise performance, and reduce pain.
Progesterone
Without enough progesterone, as often happens in perimenopause, women start experiencing symptoms like irritability, anxiety, poor sleep, and fatigue, so progesterone helps to improve those symptoms, and it supports bone and heart health too.
Meletonin
While melatonin is best-known as a sleep aid, it also regulates the immune system and tissue repair and has cancer-related benefits like increasing survival rates, improving the likelihood of responding to chemotherapy, activating the “self-destruct” process in tumor cells, and blocking the ability of cancer cells to grow new blood vessels and to spread to other tissues. (A Dr. Neubauer medication)
Senna
Because of all of the above, I can have trouble with my bowels. Senna is an herb, scientifically known as Senna alexandrina, commonly used as a laxative to treat constipation and works by stimulating bowel movements. I’ve been taking this since my diagnosis, but Dr. Neubauer warned that prolonged use can cause gi parastalisis, meaning paralysis of the stomach. It’s a functional disorder affecting your stomach nerves and muscles which can lead to making your stomach muscle contractions weaker and slower than they need to be to digest food and pass it on to your intestines. So, I’m starting to wean myself off Senna, and instead take more:
MiraLax
I have been taking more MiraLAX powder (mixed in water), which increases the amount of water in the intestinal tract to stimulate bowel movements.
It seems that all I’m doing to keep the cancer from regrowing is working, but it’s not just through the doctors’ appointments and medications mentioned above, either. I attribute my growing health to these factors as well:
Walks
I take walks, almost every day if I can. Living so close to the Deschutes River means I never have to get in the car, and I make a loop on the river trail most days. Sure, I could walk one of the hundreds of trails we have on public land around Central Oregon, but again, that would mean getting in the car. Why do that when I have a wonderful walk along the river right out my front door? Now that snow has started to fall in the mountains, I get occasional glimpses of that lovely skyline from the river trail, too. Of course, sometimes I head out before sunrise to meet the day on its way up. That reminds me: winter is coming, and with that, my hopes to ski this year. I won’t go downhill yet because of my heightened fracture risk, but I can’t wait to cross-country ski and glide through the silent woods in the sparkling snow.
Yoga
I’ve been going to yoga again over the past few months; the 6am classes are my favorite. The room is never full that early in the morning, and it is heated to a balmy 90 degrees where the muscles practically melt with our gentle movements. I don’t do every pose…I have to modify many of them for my stiff back and compromised neck, but I have been able to loosen up some of my joints…I had to take almost a year off from my practice since getting sick, and fortunately there is a noticeable improvement in my balance and flexibility just over the few months I’ve been back.
I’ve been going to the same studio for 15 years now, and wouldn’t you know it, Pam, my cancer mentor, was my first yoga teacher there. I love my 6am yoga, the teachers, and the familiar faces I see week after week. The best part about Namaspa is that it’s within walking distance from home, so again, I don’t have to get in a car. Are you noticing a theme here? In fact, I didn’t own my first car until I moved to Bend at age 32. I love a walkable/bikeable community.
Daily stretching
My at-home physical therapy exercises have been a light lift so far. Much of what I was doing was aimed at opening up my shoulders, helping my neck find the right alignment, and working my upper body, like bicep curls with one-pound weights. Now I have a series focused on my lower back, and I’m motivated to do them every day with the promise of more strength and less pain. I know I’ll need both to ski this winter, so I do my exercises.
Food
Many of the changes I’ve made in my life this year revolve around food. I’ve always eaten fairly healthy, but now I pay much more attention to my nutrition with the help of Dr. Neubauer’s suggestions. I’m not eating vegan or vegetarian right now, but I still limit my dairy intake and avoid red and processed meats. Every day (or every other day) I try to have some:
Ground flax
Chia
Hemp seeds
Fruit (berries especially)
Avocado
Nutritional yeast
Green tea
Ginger
Broccoli
Broccoli sprouts
Nuts
And protein with every meal
I could go into the specific health benefits of all the above, but this blog post is already becoming novel-length, so I’ll let you do your own research there.
Sleep
Since finishing the steroids I was on at the beginning of year I haven’t had any more problems with sleeping through the night. What a relief! This body needs all of those hours to work it’s internal healing magic. I’m sure the sleep is helped by the 10mg of melatonin I’m taking every night too.
Community
Taking part in community activities, surrounding myself with friends, and laughing have all been extremely important to me this year. A few things that have brought joy lately include:
One of my dear friends, Adryon, is on the board of the BendFilm festival which takes place in October each year. Adryon and her wife Brooke always attend the festival, and this year and I got the double pleasure of watching a few films and catching up with them this past weekend. Even better? Adryon’s brother Aaron is a filmmaker, and has promised to help me should I want to think about writing screenplays at some point. Aaron and his wife Katrina had a little girl, Jules, about a year ago and I was able to catch up with both of them at BendFilm.
Many of the people I used to work with at the Oregon Natural Desert Association now work at Central Oregon Land Watch, including Ben Gordon, who hired me for the Oregon Desert Trail job ten years ago (Ben and his wife Serena hiked the PCT in 2006 too, but we never met on the trail!). My friend Lorainne, who is their Development Director, asked if I wanted to volunteer at an aid station halfway on one of COLW’s fun runs this week, so I joined her in the gorgeous fall sunshine to distribute water, bananas, and banana bread to the runners. Friends, the conservation community, and sunshine? Sign me up! If you are local, check out the wonderful lineup of events they have coming up this fall. The Livable Future Forum will be hosting Chuck Sams, the first Indigenous National Park Service Director and Cayuse and Walla Walla tribal citizen next month. In November I’ll be attending a talk by longtime High Country News contributing editor Michelle Nijhuis who will share insights into essential environmental reading. I’ll miss the Chuck Sams talk, but he is our keynote speaker at next month’s Oregon Outdoor Recreation Summit in Pendleton (on his homelands).
A sauna sesh
One of my besties, Carrie, has access to a sauna and I’m going to partake with her this week. There are a long list of health benefits to the sauna, and I’m excited to overheat and catch up with her. Carrie and I have weekly hang-outs, and her friendship has been an amazing gift to me this year. Friends are essential to the healing process.
More cards and emails from you
Thank you!!! The love keeps coming and I can’t say thank you enough 💖💖
Mutual aid
I don’t have much, but when people who have less and are suffering from environmental injustices and their entire communities are lost to floods, like what is happening in Alaska right now, I try to donate something. You can help too by contributing to the Alaska Community Foundation.
Taking action on behalf of my community, the environment, and the country.
Taking action is a form of healing. Doing anything beyond paying attention to what is right in front of my face has been leading to spiraling despair lately, especially as the dystopian nightmare is getting closer and closer to home. So, I’m getting active. I got out my paints in preparation to participate in democracy this weekend. I hope to see some of you out there!
Again, I’m so grateful to be healthy(ish) 10 months out from diagnosis, but the reality is, two more of my classmates from the Dunlap High School class of 1995 died this year of cancer. My best bud Missy, died 2 years ago from the same exact cancer that I have, so far I know two of us from that class that have survived…but there are so many people I don’t know about. Most people aren’t public about their health problems. Does anyone know of a study going on in Central Illinois about the massive number of cancer cases happening in young people? Other than those already listed, Missy lost her first husband to cancer, another friend’s husband died of cancer, another friend’s sister and brother-in-law died of cancer… all were younger than I am now. Was it the spraying of alfalfa and corn fields? Was it radon in the ground? Was it air pollution? Anyone? I know, I know, we’ll never know for sure because the poison is coming from all around us all the time. It’s everywere. Even newborn babies have microplastics in their bodies.
A woman I’ve been following for some time now just announced her recent cancer diagnosis. Jen Gurecki has stage 2 breast cancer and has been a hard charger in the outdoor industry for years. I’ve purchased several things from the ski and snowboard company she started, Coalition Snow, and even bought a basket from Zawadisha, a Kenyan-based social enterprise she started whose mission is to provide small loans to rural Kenyan women to help finance their livelihoods. She is sharing her cancer journey over on her blog Redefining Radical. You can also donate to her Go Fund Me here.
Thank you for reading to the end, you rock!
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”.
Carrie and I got out of town last weekend.Did some real pretty walking.
I’ve had some learning moments during my Camino planning.
First, I had intended to wait to book most of my lodging until I got there and discovered how my body was doing, but the scarcity mindset set in, and I became worried that most bookable options would be booked, especially since I’m using a luggage transfer service. So I went ahead and planned out the whole 170 miles and choose mostly hostels (or albergues) with a few hotels here and there so I would be assured a good night’s sleep and some quiet on occasion. But 170 miles in two and half weeks means I’m going to be walking some long days. Can I do it?
Then I went to book the luggage transport service to each spot, figuring the more I did from home, the less I would have to do there when I am faced with my body and the miles, so I looked at three different services: Caminofacil, Tuitrans, and Pilbeo. Many of the places I had booked didn’t show up on their ready made list of delivery spots! Arrrg. One service said I should change my plans to places that did show up on their list, but another said I could contact the lodging, get some info, and pass it back to them, and they would make it happen. So I went with those guys. I went with the flexible peeps who would have my back. And as I worked through the list yesterday, I discovered a lot of my lodging WAS on their list….their list being a hodge podge of addresses and names that sometimes didn’t match the exact title of the hostel, thus the confusion. Whew. It was more work than I had planned, but good to note if you plan to hike the Camino in the future and use luggage transport. Start your booking process with the transportation folks and book from their list.
In other news, I got my chemo port removed this week! Woot! If you haven’t seen a chemo port before, picture a quarter-sized, no, maybe a bit larger… a half-dollar-sized round disk that’s about a quarter inch thick implanted beneath your skin between your collar bone and your breast. It can be on the left or right side; mine was on the right, closer to the lung tumor. It has three raised bumps on the surface, so the skin tightens around it and looks a bit alien. A tube comes off it and is threaded through a vein in your neck so that sometimes people will say, “What’s that in your neck?” When it’s time for chemo, I lather the thing up with lidocaine cream and put a bandage on it before going to the hospital. The lidocaine will numb the skin, and the nurses use a special needle to puncture the skin and port….the three dots guiding them in like the lights on a runway. The tubing is taped to the skin for the multiple courses of drugs that will be injected directly into your vein that day. It saves your arms from being destroyed by the chemo. My chemo was the kind that only needed to be injected once a month, but others get it daily or weekly. So getting this thing removed is a big step towards living with active cancer in my past.
When talking with the doctors during the removal, they asked how long I had had it in, and how long my treatment was. All of their eyes got wide when I said I got the port in January, the chemo lasted until April, and I reached “no evidence of disease” by July. “Wow!” they said. “That’s fast!” I know, I quipped back. “And I had tumors from head to thigh! 27 just in my brain!” It seems surreal to say it even now. How did I get better so fast? Is my body really that responsive to the chemicals and radiation? To the diet changes, supplements, love, and positivity from all of you? I feel like I’m a Radical Remission example, except to get that moniker, you need to have been in remission for three years. I’ve been in remission for one month. I have a ways to go, but I’m off to a good start!
Lets see, what else does the Portugal prep prep look like?
I walked 9 miles the other day, that’s training!
How about my current iteration of a gear list:
In the roller carry-on (transported each day)
Neck pillow (for the plane – that red-eye on the way over will be killer)
Inflatable pillow (for the hostels – works well to get proper neck alignment at night)
Rainpants (in suitcase when not raining – I usually wear a trash-bag rain skirt, but I figured this was front-country the whole time, I’ll be more civilized!)
Altras (I’ve never really worn them before, but they are light and I don’t need the ruggedness of my usual Oboz)
Orthotics (In case you didn’t know, I’m old)
Socks
Warm hat (in suitcase when not cold)
Mittens (in suitcase when not cold)
So there you have it folks! Next up: more walking.
I returned to PCT Days last weekend….things started going wrong just after PCT Days last year…I’m still chairing the Oregon Trails Coalition, so was helping to spread the Fund Trails message with my friend Matt Ruddy from Trailkeepers of Oregon. Speaking of…we are collecting trail stories from people all across Oregon as part of a campaign to celebrate the many ways trails show up in our lives—and why they deserve ongoing public funding and support. What’s your trail story?
I know I’ll be feeling the echoes of my Dad’s passing for quite a while, and paired with my healing journey, it’s even more of an imperative to get out on the camino to walk out a lot of these emotions. Walking is the way I process the world, walking and writing together are the ultimate…so I’m excited that I have both on the horizon.
Back to the world of cancer stuff, I’m on the maintenance schedule now that includes monthly labs and meetings with my oncologist. I got my labs done this week and it still shows low white blood cell counts and low platelets…these are side effects of my daily cancer med, so it’s to be expected, but it also means that my immune system isn’t as robust in defending my system from infection, but I started a new treatment regimine this week, prescribed by my naturopath oncologist: Mistletoe!
Yep, it’s the christmas kissing plant, or in my case, an immune cell super-power upgrade. Here is what mistletoe will do for me:
Help my immune system to recognize and destroy tumor cells by activating tumor-killing cells such as macrophages, dendritic cells and natural killer cells. As cancer progresses, cancer cells mask themselves from the immune system by hiding their cell markers. Mistletoe helps to reverse this progress, exposing cancer cells to the immune system.
Blocks the ability of cancer cells to build new blood vessels
Repairs DNA of cancer cells, making them less aggressive
Damages cancer cells’ cell membranes and structure
Promotes immune destruction of cancer cells
Blocks production of proteins that promote growth in cancer cells
Blocks ability of cancer cells to invade new tissues
Anti-inflammatory, modulates pain response
The fun part? Giving myself shots. The treatment comes in self-administered injections several times a week, and since the medication doesn’t have to be refrigerated, it should be all good to take to Europe with me in a few weeks.
So I have this new med, and when I return from Portugal, I’ll start another new med, Zometa, which is an infusion that I’ll get every three months to strengthen my bones. The internet tells me that Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures. So this will help me recover from the swiss cheese effect of the cancer growth on my bones, and it will be doubly useful because I am hovering around menopause, which also can lead to osteoporosis. I’ve been advised to avoid high-impact activities because of my increased fracture risk, and not that I’m going to suddenly start racing motocross or anything, but I’m hopeful this will lessen the risk if I do try things this winter like cross-country skiing. I’m probably still going to avoid downhill skiing for now (sob).
So even though I don’t have any active cancer, I’m still seeing doctors like it’s my job. Maybe this will lessen with time? Maybe? Because I’m on monthly labs and periodic scans and my medication is delivered by timed doses each month, this means I really can’t be away from home for more than a few weeks for the foreseeable future, and when I come off my anti-seizure drug this winter, I won’t be able to drive for three months! It’s hard to see a return to normal; this is a new normal.
Speaking of the new normal, I’ve been having trouble wrapping my head around how to live my life now and how to make decisions now. I am in that in-between place where I don’t know what going forward looks like. In my immediate future, I have Portugal, but after that???
I had started accepting that this may be the end, that it may be my last year or so, so I decided to live hard right now and do all the things. But when I got the scan this summer showing me that I didn’t have any active cancer at the moment, suddenly I could see a longer life… a future longer than a year at least, so does that mean I start saving for retirement again? Can I even entertain the possibility of retiring? All the while, I still need to make it to 5 years…and the odds aren’t quite in my favor, but then again, I’ve always excelled at exceeding the odds and have had good luck trusting the world. Do I stop planning and live now? Or plan just the next year and go big?? Or do I plan to be alive in 10 years? 5 years? 3 years? Do I start my business again? But I’ve also always wanted to write a book, so why not give that a shot when I have time (or maybe not)?
I don’t know friends. I guess I’ll start by going on a long walk.
I’m officially changing the name of these updates from “Cancer update” to “Life update.”
Why?
Well, it’s more forward thinking, I’m not giving cancer the spotlight anymore, and because my last scan showed NO EVIDENCE OF DISEASE!!!!!
You heard that right, I don’t have any active cancer at the moment!
Lets take a moment to feel it.
This news is almost as sudden of a change as it was to get the diagnosis seven long months ago; I’ve needed a beat to process it all. But at the same time things haven’t changed all that much. I still have the tumors (at least some of them), although now they are masses of dead cells that my body will eventually process and show them the exit.
I still have pain and stiffness. In fact wasn’t expecting to have a clear scan because I still have quite a bit of soreness and ache in my ribs. My neck and shoulders get incredibly sore after a long walk…Kirk and I walked 4.5 miles on a trail the other day and I was locked up for the rest of the afternoon.
But it’s not cancer. I will now be healing from injuries that were caused by the cancer.
I don’t have cancer! Right now…
That’s the other sobering thing about a NED “no evidence of disease” result of a PET scan, there is always the chance of recurrence. 🙁 A pretty good chance in fact. So in a way, this is when the real hard work starts! Eat right, exercise, stay positive, and live as hard as I can.
I’ve had a few friends this week send me tidbits from Andrea Gibson, a well-known poet who just passed away from ovarian cancer. Their words are beautiful, and it’s also heartbreaking because they had a recurrence of cancer a year after the original diagnosis. So, I’ve got to pull out all the stops to keep this body’s immune system up so there is no cozy place for the cancer to take root again.
In fact, I learned that the PET scan, while it detects active cancer in the body, can’t detect the smallest tumors under a centimeter. A PET scan uses radioactive sugar to make a map of how much energy the cells and organs of the body are using; the idea being that cancer will use more energy and therefore be picked up on a PET scan. So, 24 hours before my scan, I had to avoid any strenuous activity and abstain from sugar. I fasted six hours before the test, and when I arrived, was injected with the radioactive sugar and napped for 45 minutes while my body absorbed the stuff…all the places the sugar was consumed would show up in the scan.
And none of my tumors ate the sugar which means they aren’t active cancer tumors anymore, just dead cells.
Hooray!
I keep coming back to the fact that I will never be cured from this cancer. There will never be a guarentee that I won’t get it again. If I can make it 5 years my chances of not getting it again will be better, but that’s a LONG TIME! When it spreads the way it did in my body, its tentacles are deep. We we don’t get cured.
My white blood cells and platlets are also still really low. That can be a side effect from the Tegresso, my targeted cancer med (which I’ll be taking for the rest of my life), so my oncologist will have me take monthly labs to monitor that. Low white blood cells mean I can’t fight infections very well, so I’ve been told to take precautions there. I’ll also need to get scans every 3-4 months, and I’m starting a bone-strengthing IV soon because the numerous lesions on my bones means they are a fracture risk…and I’m almost 50, so osteoporosis is a knocking!
So it’s with mixed feelings that I share this news with you. It’s good, it’s great in fact! But I still have so much to do, and there won’t probably ever be a “return to normal.” It’s going to be finding my new normal…and that changes all the time as I try to get stronger and recover some of the muscle loss.
I’ll leave you today with this morning dance party I went to recently. It was the first time I had danced in almost a year. It’s definitely time to dance.
With so much uncertainty these days – both with my illness, my dad’s illness, and in the world – it seems the most logical thing to do is to focus on each day. What in the day makes it a success? What is there to be grateful for? It’s as if the most cheesy sentiments are my mantras these days…and they keep me going.
I’m halfway across the country right now, down in Lafayette, Louisiana, visiting my parents for a few weeks.
This is the first time in years that my three brothers and I have been with my parents in the same place at the same time; it has been a wonderful visit.
Before I left Bend, I had a barrage of doctors’ appointments, and once again, things are promising! The neck surgeon gave me the best news of all, my neck (a constant source of concern and soreness) is healing well, although I’ll probably have the neck soreness for the rest of my life . But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement.
I just have to use pain as my guide.
Easy to say, let pain be your guide… I won’t know it’s too much until the pain comes on, but there is hope in that guidance as well. He said the only things I need to avoid are axial loading activities, like standing on my head, and I can safely say I will be doing no such thing! I’m even starting to consider putting on an empty day pack and slowly adding weight over time. If I can walk with a day pack, the world seems much more doable…and my plans of a Camino journey even more likely.
The best outcome from these doctors’ appointments was the clearance to walk a section of the Camino this fall. More to come on that as I start to put that trip together, but I will be heading to Portugal for a few weeks in September! I’m thrilled at the prospect of stretching my legs along the coastal path, all with a bed to sleep in each night, coffees and cafes along the way, and meeting people from all over the world. Yes, I’ll be going solo, and I’m excited about the prospect of trusting the world in this next journey. I’ll be blogging daily again on that trip, it will be just like old times!
I’ve been sharing my story with a wider audience too. The National Brain Tumor Society asked to feature my writing on their blog, so they put together a wonderful little feature from my blog this year.
What else is new? I did my first water aerobics class yesterday, and wow, am I sore! I had to modify my moves in the pool…too much jumping is still quite jarring to my spine…so I slowed my roll as needed with the lovely older ladies that were in class with me. My cousin Amy helped me get a pass to her pool because I quickly found that going for a walk in July in Louisiana was WAY TOO hot and humid for a comfortable jaunt. I either have to get up before the sun or head to the pool for any exercise while I’m down here.
I have a busy, busy schedule when I get back to Oregon. A ton of doctors’ appointments await me, including a full body PET scan…cross your fingers for me that all my tumors are still getting smaller! Then it’s Kirk’s birthday, a visit from my Aunt Barbara, a Burkina Faso Peace Corps Reunion, a trip to see some friends in Eastern Oregon, PCT Days in Cascade Locks, and maybe even a trip to the Oregon coast. It may be too much, but I like to be optimistic and ambitious, so we’ll see! All the while, I need to ramp up my miles so I have hope of hiking 5-10 miles a day on the Camino in September.
I’m taking each day as it comes, but also giving myself things to look forward to. And I have so much to look forward to!
. But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement. 
