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!
I grew up listening to this song by the Scorpions, and it still brings a pang of longing and sadness, and is it hope? And I didn’t know the full undercurrents of the song at the time, but its wistful tone certainly resonated with me.
And I have been facing so much change recently, it’s hard to get my bearings. Especially in the month or so since the news of my promising scans…it seems I’m on the verge of seeing a life for myself again, but of course I’ve still been living a life…but you know what I mean. I’ve had to live in the present for the past six months, so much so that looking beyond the next week or few weeks just didn’t seem possible. But all this word salad is to say the only constant is change and I’m grateful that I’ve had such a secure base of loved ones that have provided enough stability that I can weather the winds of change with a bit of grace. It’s like I’m a blade of grass, blowing in the wind. Sometimes the wind is whipping me around, bending me almost to the ground and roughing me up, but you all keep me grounded, set in place, so that the wind can try and rip me up, but it can’t. My roots are too deep.
Woo, can you tell it’s 3am and I’m back in my early morning writing phase? 😄
I’m sure you are all eager to hear about the big birthday party bash…it was fabulous! I think almost 50 people came out to Amber’s place in Corvallis. People brought flowers and snacks, fresh strawberries from nearby farms, and so much joy. It was such a lovely gathering….even though something got to me. It might have been a bad sandwich, or the heat, or some pain I’ve been having in my left shoulder, but I vomited several times on Saturday and it aggravated my throat enough that I lost my voice, and it left me with barely a whisper. Really, it left me mostly listening to everyone around me chatting about adventures past, present, and future. And so much serendipity happened! Dr. Grant, a hiker I had met at the Cascade Ruck last year came, and just happened to be heading down to hike the Bigfoot Trail, and wouldn’t you know it, Fireweed, who is on the Bigfoot Trail board and was planning on giving her a ride to the trail was also up for the party and the two met for the first time. Dr. Grant even got a ride down from the party on Sunday to start hiking the trail. And Anne, Amber’s wife, connected with my good friend Sage when I remembered they were both from the same very small northern Californian town…so small that of course their paths had crossed many years ago when both lived there, yet they were meeting at the party, of all places, years later.
The magic of people, good people, is a big part of what is keeping me going. Such kind and generous people. Sue, a volunteer that I’ve had on a couple of ONDA volunteer trips, came as she lived in Corvallis, and wrote to me later and said “I knew no one, except you, when I showed up. Yet— I knew immediately this is “our community”. You, your life, your work, brings out the good in people —- just like the mountains, the rivers, the oceans, as we traverse this earthly landscape.” That is just everything. My heart is full.
Sue!
So yes, I was sick and it lingered the next day, but we ate bagels and drank coffee in the shade of Amber and Anne’s giant sequoia tree in her yard, playing “move with the shade” as the morning sun shifted in the hot day.
Nemo and Pouch (my PCT 2006 besties) won the award for having traveled the farthest…from upstate NY! Just for the weekend!
We called ourselves “Team Primary” in the North Cascades on the PCT because we were in blue, yellow, and red rain jackets half the time.
There were so many people I hadn’t seen in ages who came out. I couldn’t have asked for a better party. I hope to have many, many more. Some suggested it be an annual thing! Who wants to host next time?
And of course, Amber’s Nomadic Pizza was a huge hit. She and our friend Megan sweated for hours slinging pies for us in the hot, hot wood-fired food cart, and it was so delicious. (Amber can cater private events like my party…please book her if you have something coming up!)
The pizza guru, Amber
This week has been one full of doctor’s appointments and hanging with my little brother Dan. He just bought a new car and wanted to stretch its legs and see me too. Dan is in the Air Force based in San Antonio, so he drove three days up, arriving just in time to go out to dinner with Kirk and me on my actual birthday (Monday, June 9….the best day of the year!).
He took me to meet my new oncologist and to wrap up with my old one. He took me to get more labs done and along with another MRI. We took walks along the river and drove up to the mountains for an afternoon, too. It was a chill but wonderful visit. Thanks Dan!
Doing the tourist thing in Bend.
I have more appointments before I head out again to visit my parents next week. All three of my brothers will be down there too, so it will be another busy week. My dad’s Alzheimer’s is progressing, and his time is limited, so I’m glad we are all able to gather together.
So even though my prospects of health continue to improve, I’m still caught living in the moment, paying attention to each day as it comes. The peonies that I got for my birthday are a good reminder of that…each day they open a little more, changing ever so slightly, but changing, so that it’s worth stopping and appreciating them in each slight phase. Sure, I could think ahead to when they are dead and gone, but why do that when they are vibrant and alive and in front of me now? Enjoy them. Enjoy this. Enjoy the moment.
I’ve been out in the world for a couple of weeks now, and it’s funny how quickly I can revert my thinking and actions to those of pre-cancer me. Sure, I do feel fragile almost all the time, which tells me my complete lack of pain meds isn’t necessarily the way I want to go. When I do take meds, that’s when the illusion is almost complete. That’s when I don’t feel my neck and spine still adjusting to the titanium plate and additional collapsed vertebrae…at least I think that’s what I’m feeling? I won’t meet with the neck surgeon again for another month. I have questions for the surgeon: can I do yoga? can I put a pack on? I’m guessing from the way things are feeling that no. No, not yet.
But yes, the farther away I get from my cancer nest (that is my adjustable bed and trusty cart filled with all the medications and books and diversions that I’ve been relying on these past five months), the more normal I feel. Friends and family tell me I look great. I’m up and about and going on raft trips and flying, but then I get tired walking up a hill and get dizzy when I stand up too fast. The illusion is thin.
I know I’m heading in the right direction though!
Five days of rafting on the John Day River was blissful. It was much colder that I expected, so I was almost always covered up. Immersing myself in the watery wisdom of Oregon’s longest undammed river was very soothing, even though I was quite limited in my time off the raft.
I returned from the river trip quite sore and worried that I had overdone it. The cot and thick paco pad I slept on helped me feel better during the trip, but I was still quite exposed to movements and actions that I hadn’t experienced in months.
Just look at that basalt!Captin Kirk on the oars
And then I’ve had to rearrange a lot of things so I could spend some time with family. Time that has been overdue for many reasons. I’m not going into much of the family dynamics now, but needless to say, I’m not the only one who has been going through a hard time this year.
Today the rain is raining, the yard is bursting with the change of seasons, and I’m packing for yet another trip, this time a getaway with just Kirk. We didn’t get to celebrate our anniversary this February because, well, cancer, and the four months he took off of work to help me out were also work. We’ve both been through the ringer this year, and it’s time to relax and celebrate a little bit.
Oh yeah, the celebrating. I do feel like I’ve been celebrating since my last appointment where I got the good news that my cancer is retreating. I even had a small piece of cake this past week…I’ve been avoiding sugar like the plague for most of the year as it’s a wonderful food for those mutanous cancer cells to feast on, but I just wanted a little taste. I do want to rein things in after vacation (with an exception for my birthday party of course!) and trend back towards more of a vegan than vegetarian diet again and more towards whole foods than easy to grab snacks, but I’m also not beating myself up for the little treats I’ve had and will have for the next few weeks. I’m still in celebration mode!
So I’ll check in again in June. I have a whole slew of doctors appointments coming up then: palliative care, old oncologist, new oncologist, naturopath oncologist, radiation oncologist, lab work, MRI, spine surgeon, acupuncture, physical therapy, and a gynocological appointment (I’m STILL going through perimenopause through all this…hello hot flashes! They have been constant the past few months).
Before I sign off today, I have a question for you. Some thoughts about trails have been percolating in my mind…things I want to look for and focus on in the near future….and maybe some of you can help. Does the US have any hut-to-hut or camino-type hikes? I ordered a hut-to-hut book for the States, but half the options are ski traverses, and most of the others are still carry-your-own-gear type of trips. If I can’t carry a pack for a while, where are my luggage transfer services? And if I can’t find these types of hikes, I should probably get busy putting some together. I bet some of the pieces are there, and it just might take a motivated hiker to put them together. 🙂
. But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement. 
She-ra Hikes 