It’s a strange place to be, this becoming someone new, especially when I’m not sure of my ability to become at all.
Words have started flowing in what may or may not become a book project, and rather than the paragraphs adding up to a cancer memoir or adventure book, I’m discovering the resonance seems to be in the sticky, dark, murky life found between adventures – in how I’ve made decisions.
I thought the throb and pace of the thing would be found in stories about managing the brown recluse bite on my thigh and surviving a military coup in Ivory Coast, but instead the depths I haven’t plumbed yet are in the cloudy moments when I don’t know what’s coming after the next hike, when I don’t know which direction to turn, or which of the thousands of possibilities is the next best one.
Probably because I’m in that murky middle now.
The difference is I didn’t choose this time. Is that why I’m finding it so difficult to find my footing? I LOVED change before, I used to get so excited for the unknown.
I recently finished reading Maggie O’Ferrell’s Land, and a particular choice in one of the character’s lives hit me: a boy chose to join the priesthood BECAUSE it would require very little decision making for the rest of his life. He would be told where to go, what to do, how to do it, and I realized there is probably a lot of comfort in that for people. In the absence of making decisions, there is a simple doing, and perhaps not much questioning. I am not built like that; I find the idea stifling, accompanied by a dense panic feeling. But isn’t that what cancer has done to me? Taken my choices away? Over the past year and a half I have dutifully followed directions, shown up for my infusions, scans, blood draws; booked the appointments; and tried to untangle the newest pain in my body.
I don’t want to give all my power away to cancer, but it changed me, and I still have that stifling feeling. Do I have choices now?
I recently attended Pacific Crest Trail Days. I’ve been going to PCT days since it started. First to screen print my hikertrash designs onto filthy hikers, then to promote the Oregon Desert Trail, and now, simply to be around community. I realized before I left home for the festival that I would be known there as She-ra, not as Renee. Am I She-ra anymore? Could I embody She-ra for the weekend? The She-ra I used to be was exuberant, silly, fearless, and also carried a plastic sword to Canada, twice. I tried real hard to be that person again. I showed up for the Thursday night dance party ready to lay one down, but a crappy DJ didn’t play anything danceable, or maybe I’m old. I visited, laughed, caught up with friends, but the next day I needed to take a long nap in the morning, then another in the afternoon. I don’t have the stamina to be She-ra for very long anymore. I just don’t think I’m that person right now. So if I’m not her, who am I?
And that is at the heart of it. She-ra chose her future. Renee’s future is happening to her.
I’m a ghost of She-ra now.
Blink and you might miss me.
I know it’s not that cut and dried. I do have some choice, right? I decided to travel much of this year and seek out new destinations, but it’s so tiring. It turns out I’m still me when I get somewhere new. I used to become someone new, but now I’m stuck with myself, and am tired…a new horizon isn’t reinvigorating the She-ra that I used to be.
I try to keep planning. I have ideas of long walks I could do with the help of a stroller, or maybe even a modified pack, but I also get tired so easily. I don’t know that I like long walks anymore. Renee has different motivations now.
I’m in the messy middle, and am trying to be ok with whatever it is I’m becoming. Or maybe my becoming is done now, and I’m just existing in the present. The present isn’t a terrible place to be.
I come back to the idea of writing a book, and I don’t want to think of getting published or anything like that. I’m writing to make the days bearable. To give me something to do. To skip ahead and picture the finished book is counterproductive if I’m writing to find out.
Writing so I can think is the thing.
These fine folks help me be both She-ra and Renee. Pouch, NEMO and I all met on the PCT 20 years ago. Their love child, Rewan, is the best of them both!
I keep thinking I will see a clear path forward, but the horizon shimmers enough that the next step is obscured. This time my horizon was the other side of my first year in remission, but the CT scan I was supposed to have this afternoon has been pushed back another few weeks. Oh yeah, and we are going to do a bone scan too, because the PET scan wasn’t approved. That will happen around the end of the month.
I feel like I’m in the clear. I feel stronger lately; robust is how I’ve been describing it.
I’m sure the docs want to hedge their bets; how closely can they really be communicating all the time, anyway, huh? I mean, how often does my oncologist talk to my nateropath oncologists? Or my acupuncturist, massage therapist, physical therapist, pain specialist, neurosurgeon, second opinion neurosurgeon, neurologist, primary care doctor, pain psychologist, or osteopath talk to each other? I have standing appointments and/or relationships with all those practitioners… not to mention an odd session of free reiki that I get at the cancer center. Other semi-regular appointments include a trip to the gynecologist, feldenkris practitioner, and palliative care nurse…
I think it’s apparent by now that it’s my responsibility to let each doc I see know what the other one said…
But don’t forget to make that appointment. I have been notified that I need to switch from Summit to Saint Charles palliative care, and since I haven’t heard from them since my last appointment, I need to call them. It’s on me…
Oh, and schedule the brain MRI for November too. Get it scheduled when insurance approves it, but remember to call multiple times because no one lets you know insurance has approved it…
Oh, and get replacement air filters for the four air purifiers at home; the wildfire smoke has them clogged all up after the weeks of poison air, and I have lung cancer and all…
Yes I’m feeling better. Yes I started going to yoga again, Yes I’ve made a few fun trips this summer and have a few more coming up, but I feel like I’m sinking sometimes from the sheer effort of it all. Thank god I have a type A personality, what do those of you do who are on your own? I have a loving partner, an engaged and supporting mother, and many close friends who care about me deeply. I know how lucky I am, and even though I’m paying for some of these appointments out of pocket, wow, my insurance sure does cover a lot of it, and I’m so glad my landlords are caring and decent people who have provided an affordable place to live in Bend. I live a simply enough that I can stay here, as the town is quickly becoming a city before my eyes.
At yoga this week I was given the card “Voyage,” and it seems apt. Cancer is a journey. I haven’t survived cancer, I live with it. And we are coming to terms and the world still turns.
We went to the Umpqua River this weekend; the water color alone brings so much joy.
I fell three times in the last month, but I’m not broken. I have headaches now, are the two related? Maybe, maybe not. No one can say for sure. So many wrongs are overlapping at the same time and I have no idea what preceded what, what caused what, and what are simply coincidences. All of this makes me want to curl up in a ball and throw the covers over my head.
HOWEVER, for the first time I saw through this hazy state of managing my pain when my new pain psychologist said: “There is more that is right in your body than wrong.”
There is more right in my body than wrong.
I don’t have active cancer right now, I have pain.
There is more right in my body than wrong.
You will notice that I use repetition a lot in these posts, sure it’s for emphasis, but it’s also so I can get the words through my thick skull. I have been repeating her words in my head to myself for days now. I can scarcely believe them. There is more going right in my body than wrong. According to my latest brain MRI, I am stable. I’m still waiting on a Guardant Reveal blood test and a PET Scan to tell me if I’ve been in remission for a year now… but I think I still am???? (BTW, I’m VERY EXCITED for the Guardant Reveal test. It will be my first one and it detects cancer cells smaller than a PET scan can, which is great….so in essence, I think from now on I can get the blood test, and if there is cancer, then get the PET to tell us where it is.)
Other wise wisdom from my pain psychologist includes learning that I’m probably overlaying my emotional trauma on top of my physical trauma, which could explain a lot. Of course the cancer diagnosis was traumatizing. Of course ending up in a wheelchair after not dying was traumatizing. But so was watching my parents deal with a stroke, long-term care issues, late stage Alzheimer’s, their only daughter getting stage-4 cancer, and then my father’s death.
Is the pain in my brain? Most of it started escalating at the one-year anniversary of my diagnosis, which is also the anniversary of all the above.
I DO feel more robust. I do feel like I could be turning some kind of page in my health journey…The fact that I fell three times in the last month definitely helps reinforce that idea. I fell to the ground three times and stood back up again. But, I feel like a toddler, learning to walk again. I’m wobbly. I am not quite sure how to balance in this new world, not sure where the balance is. (Granted, most of the falls have also accompanied the increase in dosage of one of my pain meds, which…wait for it…causes balance issues)
But I am getting stronger. I see that now – that I needed a year in remission for my body to do what it does best: heal. In much of the last year I needed to get out of the way of my body’s ability to get stronger and avoid fall risks. I needed to act as if I’m fragile. I needed to think of walking again like I was a bull in a china shop (I’m both the bull and the china in this scenario.)
I can’t quite start bashing my way through the brush like I used to, but I can try to move in a more deliberate way in the general direction of my former activities. And that is promising!
I’m in the middle of the Fishtrap Writers’ Conference at Wallow Lake (and eastern terminus of the Blue Mountains Trail!) and am absolutely blown away by the level of writing, quality of people, and depth of community I’m finding out here. I want to write more about the week, and the multi-stop trip I took to get here, but first I want to share a bit of one of today’s writing prompts. I’m in workshop with the incredible Ana Maria Spagna where daily she takes us through a variety of thought experiments and writing exercises…one building on the other as each day progresses.
Now I’ve written from writing prompts before, they were usually grudgingly typed out in my home office, alone, and was unimpressed with my efforts: usually lack-luster and boring. Why was it different this time? Well, I’m in a room with ten other writers and we are given a time limit. It’s amazing what a little pressure will do, along with the desire to show up in a room with such accomplished writers. Also, it’s day three of the workshop, so we’ve all started to show a bit of our soft underbelly. This may seem odd to you as I’ve been all soft underbelly since my cancer diagnosis 18 months ago, but when in public, with new people, I’m not usually the first one to jump up and say: “Hey, I’m dealing with cancer, it’s all I’ve been writing about lately.” Instead, I lead with the hiking stuff.
I started sharing more at the end of our time yesterday, but today when given the hermit crab prompt, I enjoyed trying to only show a bit of underbelly. Just a glimpse.
Tea
1992
My mom brews up a mug of tea and I shake my head and fake puke when she asks if I want a cup. “Tastes like dirt” I reply.
1999
All the villagers drink tea, and take great pride in pouring it elaborately. I mean, they pour from two feet up in the air! The brown stream is expertly aimed from one small glass cup into another. They say the hight helps mix the sugar. I can’t refuse their gift; that would be rude. When I try to pour, none goes in the other cup. They laugh.
2007
The office packs lipton tea bags into our resupply. I had to drink it, I mean, I should drink it; it was carried into the backcountry on horseback for goodness sake! I had to be grateful for anything to break up the monotony of warm-water bottle water. Oh yeah, there were definitely BPAs in those old Nalgene’s, especially when we made sun tea and soaked those bags all day in those plastic bottles.
2015
Why didn’t anyone tell me there were herbal teas that tasted like mint and lemon? Yes please. I can finally move away from the dirt.
2020
A little dirt is ok…and it goes down easier in something like a green tea that is mixed with ginger or tumeric. I read that it’s good for me, a scrap of hope in these eternal COVID times? And I think I’m finally used to the earthy taste. I should be, geez, I’m enough of a dirtbag.
2025 – Spring
Now I’m supposed to drink as much green tea as possible. My naturopath tells me to drink at least two cups a day; but more is fine too. “It has immune strengthening properties,” she says. “As if that will make a difference,” I think.
2025 – Summer
Friends send me green tea now. My shelves are overflowing with the stuff. Word got out that I can’t drink right now, and so red wine is off the list. Tea will never be a substitute for a big, bold red, but the Japanese rice-based tea that Margo sent is ok…
2026
Mom found the green tea I left behind on my last visit and brewed a cup. “Uggg,” she said. “I don’t know how you can drink the stuff.”
The most illuminating aspect of spending decades of my life walking across the world has been welcoming a shared experience with strangers in far-flung places.
Kindness personified…in all these peeps!
When I met Jesse on the Oregon Desert Trail, I could only see an angry rancher with a gun on the front seat of his pick-up until we started talking about the wonders of nearby Orejana Canyon, and we both turned soft and pleasant. Sue and Don rolled up an impossibly rocky road in their ATV while I was deep in the Superstition Mountains on the Arizona Trail; I started my internal grumble at having my pleasant morning interrupted by a noisy gas engine when they offered me a cold drink and fawned over my efforts. And then there was the time I met another Renee – we were both curious about the other: one, a world traveling solo female hiker meeting another: a former nuclear engineer on the remote Lemhi Pass along the Continental Divide Trail.
It all comes down to curiosity and kindness.
I have been offered more cold water, cold beers, and cold sodas by strangers than by my closest friends and family, and that makes me very happy. That gives me hope. That with face-to-face interactions: my humanity looking at your humanity, me in my dirty pee-stained legs talking with you in your fabric-softened jeans, we can laugh together, trade stories together, and marvel at unexpected connections.
I love strangers. Especially strangers I meet when we both have something to give each other: respect.
I am happy to report that my reliance on the world to keep me buoyed in optimism and hope began long before the cancer started. It began when I started traveling.
Even back in my first days in Zogore when I was the first health education Peace Corps volunteer to live in the subsistence farming community, not to mention the first foreigner, the curious and friendly welcome of the villagers instantly broke the initial barriers of language and culture in that sub-Saharan African community. Sometimes that looked like bored teenagers sitting in the shade with me while I waited for the shuttered health clinic to reopen after lunch. The head nurse, Adama, was supposed to return in the afternoons to reopen the clinic, but sometimes he didn’t. I taught the boys UNO – they taught me how to cheat. We drank millet beer out of calabashes and swatted flies as we waited the long wait.
I believe in survival of the kindest. Not survival of the fittest, which has been misattributed to Darwin for many long years. In Darwin’s first book about humans, The Descent of Man, and Selection In Relation to Sex, Darwin argued for, “the greater strength of the social or maternal instincts than that of any other instinct or motive.”
Survival of the kindest.
Why is it that kindness and connection can be easier to find away from home, when you are raw and vulnerable, or bewildered and in need?
Is that why I was transfixed by the United airlines in-flight entertainment when I started watching the Pole to Pole TV show recently?
In the first episode, I became enthralled when I saw Will Smith find a sincere connection to another human. (You must be thinking here: “Is she really referencing Will Smith twice in recent blog posts? Yes. Yes I am.) Talking about depression will do that for you, especially when each and every one of us has experienced its heavy pull before. Will was talking to professional rugby player – turned polar explorer, Richard Parks, in a tent after they traveled on skis over Antarctic ice. The camera zoomed in when both men became teary-eyed. Richard was explaining how he broke his shoulder during a rugby game, and when he couldn’t play anymore, he floundered with an identity that didn’t apply anymore (sound familiar??). Will…well in his case, you probably know about the slap heard round the world and his accompanying fall from grace.
“When you are the center of the storm, the key is to keep moving through it,” Richard said. “We need to be willing to step into the unknown.”
And suddenly I sat up in my cramped airline seat. His words echoed how I’ve been thinking about living a life with cancer. Wait, even before then… even when I didn’t know how to deal with the countless cases of malaria, AIDS, and Guinea Worm in Burkina Faso, especially when the village nurse didn’t come back to work.
I pressed play on the next episode. The next leg of Will’s journey took him to the Amazon to meet snake expert Bryan Fry. Bryan and Will were trying to find a large Anaconda and learn about indigenous ways of life when something slid into place in my brain: If you add our assured mortality to the qualities of curiosity and kindness, meditations on death really rounded out my new way of understanding the world:
We are all curious. We all benefit from kindness. We all die.
Bryan had spinal meningitis as a kid, and when he didn’t die, he decided to devote his life to finding venomous animals that might provide new cures to diseases like his. His purpose and curiosity drove him into deep caves and jungles to find the elusive toxins. I watched as Will and Bryan’s eyes welled with tears in the conversation. Did this TV show mean to reveal what happens when people are vulnerable with each other?
In order to find the really big snake, the two visit Waorani elder Penti Baihua. The Waorani live very close to nature, with very little between their skin, the jungle, and their way of life. It turns out the snake, and in turn the tribe, is threatened by oil drilling. The drilling portends the death of an ecosystem, and Penti then says, “When I walk the jungle is when I feel most free.” Haven’t I said the very same thing? Just without the jungle part?
There are connections here that I’m just starting to pull on with this blog post. If I pull too hard, I’m going to have to write a book about it, so I’ll just outline some things that are jumping out at me.
Documenting this very scene in the TV show and discussing the Waorani’s fight to save their home, even highlighting the activism and political mobilization they are engaged in, is the essence of what I’ve begun to mull over…I call it creative activism. Creative activism is using our particular talents (like the expertise of the National Geographic storytellers and camera people) to help communicate dire social or environmental problems to the world in order to activate others’ curiosity and kindness when faced with death.
What is my part to play as a creative activist? Could it be writing this very blog? For another creative activist I admire, check out Jeremy Collins’ book Eventually a Sequoia.
Ok, before I get too meta about it, I’m going to rein it in and go back to what I learned on the airplane.
Will Smith goes to the Himalayas and meets some strangers to talk about finding happiness (turns out, happiness doesn’t necessarily involve going to this gorgeous mountain range, but, I mean, it doesn’t hurt, right?)
It immediately becomes apparent that in those experts’ eyes, happiness is closely tied to experiencing death. The guide narrowly escaped dying in a car crash. Another had a brother who got advanced cancer. Will? A death of ego.
These folks hiked up to a remote monastery to speak with a Buddhist monk who said, “When you turn your full attention to death, you understand what is important and what is not.”
Will went on to extrapolate, “Staring at death introduces you to freedom.”
Chills.
It’s as if everything I’ve been thinking and processing over this past 18 months now has been summed up in this show. In fact, almost everything I’ve been thinking and living is also outlined here.
That I found out there are no surgical fixes for my damaged spine.
That my only option is pain management.
And this was the song I was going to have you play:
But I’m not going to tell that story. I’m not going to explain how I walked away from the surgeon’s office feeling like a weight had been lifted while at the same time feeling a deep a sorrow pulling me into the ground.
I’m not going to tell you that the doctor had been incredibly empathetic. That he had looked at me with eyes that spoke of regret, regret that his knife couldn’t solve me.
There is nothing surgically to be done.
I won’t tell you that I wanted to drown my immediate feelings in a big, bold bottle of red, but because I’m not drinking, I instead sat in my Honda Fit, scrolling on my phone, trying to find the name of a passable non-alcoholic red wine. I gave up. There are none. Determined to feed my feelings, I heard the call of my next vice: sugar, and drove to the store, walked down the ice cream aisle, and grabbed several pints and boxes of treats. I fought with good cancer patient me who should be avoiding added sugars. The hurting me was determined to drown my emotional chaos in caramel swirls, but good me took control and peeked at the nutrition labels. It was too late, several sweet options were switched out for sorbet and no-sugar-added yogurt treats. This disease haunts me, even when I want to indulge.
This isn’t the story I’m telling you because it changed when I got home. I put the ice cream in the freezer – unopened, then popped the tab on a can of watermelon flavored La Croix. Something shifted.
This is where the story starts:
My body is my home.
The news that I have to accept my back’s limitations didn’t come as a surprise. In the month since I wrote that I wouldn’t stop until I got surgery on my spine, I had secretly considered that my current limitations might be permanent. That driving down two-track roads which disappeared into a sagebrush horizon would forever be out of reach; that the washboard rattle in my vertebrae would be too painful to endure.
Instead of the news prompting another round of grieving for what I lost, I stopped. I sat. I stared at the wall.
This is my body now.
This is my life now.
In the great pause of the afternoon, I got several texts from dear friends. I received a phone call from a radiant soul checking in on me in the exact moment I needed someone to check on me, and I knew I could let go now. That my friends can carry me, that my peeps got me, the world will catch me.
The final message was when I decided if pain was to be my constant companion that it didn’t matter if I was in pain at home under a heating pad, or in pain on a trail, out in the world. Yes, I had been living this way all along, walking the camino last fall, going on rafting trips, and snorkeling adventures, but I FELT it now.
This is my body now.
I looked up the yoga schedule at my local studio. I haven’t done yoga since January when I thought I was falling apart. I wasn’t physically any different now than I was then, other than I understood that I was going to have to exist in my body as is. This is as good as it gets. I might as well start doing yoga again.
Then I saw it. Joanna was teaching the 6am class, the class I had started taking 16 years ago. The class that had seen me through career changes, thru-hikes, and confronting an aging body. Joanna is a member of my cancer support group along with Pam, who just happened to be my first teacher at that 6am class on a murky morning in November. THIS was a sign. It was time to go back to yoga. It was time to find out what this body is capable of, without thinking a magical cure might appear out of my future’s uncertainty.
I entered the warmed air of the studio, eased my body into it’s first child’s pose in a very long time, and breathed as Joanna explained today’s theme was: Your Body is Home.
Tears welled behind my closed eyes.
My body is home.
This is my body now.
This is my life now.
There is certainty in that. I have a future I can work with now.
This is the song I want you to play now. Close your eyes, sit back, or better yet, lay down in the grass and let it sink into you.
As seen in a Forest Service bathroom last weekend. “For the greatest good” is like saying “be best.” Whose greatest good????
Something has changed. Something is always changing.
I woke up at 1am in the most excruciating pain I’ve been in since my diagnosis 16 months ago. How can that be possible? Answer: I’ve been masking the pain, and it’s been getting worse.
This is your song for this post, and yes I just watched Project Hail Mary. This song is my vibe today.
How did this happen?
It’s all related to the week in January when I felt like my spine was crumbling. My delayed pain upon standing had been getting worse over the previous month, and I had started to feel a “pulling” sensation in the left back side of my skull. As you may remember, a neck MRI and many doctors appointments later, my care team resolved that there was no surgical intervention needed. Yes, my spine is compressed in a few places, but it was a stable compression, not impinging on my spinal cord. I learned I was feeling a logical kind of pain, not a damaging sort.
I went to see a doctor at High Desert Sport and Spine, a clinic that specializes in non-surgical interventions, and we decided to try a nerve block in one of my compressed vertebrae to see if it would stop the delayed pain upon standing, which by this point had become a debilitating throbbing in my head and shoulders which lasted a full 10 seconds, 10 seconds after standing. The referring feeling of a pulling at the back of my skull, which I later recognized as a spasm, was a secondary pain, and an additional layer of the dreaded “p” word was caused by the constant bracing my neck and shoulders were doing to protect me. My body would brace for the throbbing before I stood up, while I stood up, and after I was already up. My neck and shoulders are almost constantly inflamed by this involuntary action, and I’ve been taking anti-inflammatories around the clock since then.
Luckily, the ibuprofen stops the neck and shoulder soreness and the skull spasms. This makes sense if the spasm is caused by an inflamed nerve in my neck; the anti-inflammatory reduces the swelling, which reduces (or eliminates) the spasm for the duration of the med’s effectiveness.
Nothing helps the delayed pain.
So, it wasn’t until the end of March that I was able to schedule the nerve block, and I had been coping just fine by taking mass quantities of ibuprofen over the previous months. But, the day came and the nerve block didn’t do anything.
I had put a lot of hope into that block.
I had rested my hopes and dreams on that block.
I could take all the meds because I was getting the block, it would fix everything.
I was even on the plane ride back home from helping my mom recover from a shoulder surgery when I watched a movie about a climber in Yosemite, and I felt so good that I knew I would thru-hike again. It was definitely possible! Two hours later, when the ibuprofen wore off: no way. There is no way I can hike again.
The truth of what I had been blocking revealed that my “feel good” hours were an illusion. I was not better.
Ok, so the nerve block didn’t work. I have another appointment with the doctor today to see if there is anything else we can try, but in the meantime, the pain has been getting unbearable. How do I know? I had an appointment with my primary care doctor for my annual physical, and my blood test came back with high potassium levels. It was very easy to determine what was causing that…the handfuls of ibuprofen I was taking each day. Unfortunately, high potassium can lead to kidney damage, which can be very bad, so my primary care doc told me to ramp up the gabapentin (nerve pain medication) and decrease my ibuprofen use and to get my labs drawn in another week to see the difference (that’s today). Well shit.
The problem with gabapentin is the slow increase of dosage that you need to take to get up to full power. My ramping up of the drug would take weeks, meanwhile the reduction in vitamin I (yes, we thru-hikers refer to ibuprofen as a vitamin because we often take it daily) would have to start immediately.
I spent some serious time in the pain cave this week, and it soon became clear to me that things were much worse than in January. The pulling feeling is a sharp icepick stab to the head. The neck and shoulder throbbing is debilitating, and all combined together: I can no longer function without constant pain medication. Oh, and oxy doesn’t work on nerve pain, so that’s not even worth taking.
Last night I woke up for my nightly pee and was easily in the most pain I’ve been in since the cancer diagnosis. I was hit by a mack truck. My skull was on fire on the inside and out. I was a 7.5 on the scale of 1-10 on the pain scale.
This is a now pain. My kidneys are a not now pain. I took the #&%^#& ibuprofen.
Where do we go from here? I have no idea, but I meet with the High Desert Sport and Spine doc later today, my oncologist and neck surgeon next week, and I am also getting an EEG test done for a neurologist appointment. I hope one of them can find something actionable to do because this isn’t sustainable. I can not live this way.
I was thinking I’d wait until I had a next step before writing all of this out. I don’t mean to scare anyone, but since this blog is for me, as a chronicle of what I’m going through, I’m choosing to publish this post when I’m crabby. When I’m exhausted, and my eyes are so tired they feel like sandpaper. I’m writing like I’m at the end of my wits, because that’s what I am.
None of this will ever be over. You don’t get to say “I’m all better now” with stage 4 cancer.
It won’t be over until I’m over, so this is just another chapter.
“Leap and the net will appear.” I found myself saying to Bumblefoot, a 33-year-old PCT hiker from Canada who sat across from me at breakfast in Costa Rica this morning. The very fact of a conversation that veered towards the existential angst of living in a world of infinite choice, possibilities, and uncertainty was a beautiful thing. That we were both PCT thru-hikers? Mind-blowing.
My sojourn in this Central American country is coming to an end soon, and it’s been a wonderful investment in time, energy, and money…despite needing to pop frequent pain medications and wear my neck brace from time to time.
As most of you know, I’m operating under the “retire as I go” life plan, as I have done most of my life. This trip to Costa Rica fits right into that philosophy – even with incurable cancer. Strike that…especially with incurable cancer. I need to live as hard as I can right now because my next brain MRI is scheduled for shortly after I return. Someone in my position can’t get off the treadmill of living in three-month intervals between scans and labwork and doctors’ appointments. The possibility of being struck down at any point still lingers close to the surface of everything I do, so I’m practically throwing myself at life.
The jarring whiplash of existence with an incurable disease when I’m feeling pretty good right now is agonizing. Is it incurable or terminal? What is the right terminology? People in my writing retreat this week asked why I use the word incurable when chances are that I will die from this disease. That word choice is intentional. It’s easier to live when I say incurable, much as it’s easier to live when I say remission rather than NED (no evidence of disease). Some in my position would never use the “R” world to explain their current state. The reality is an NED status is a snap-shot in time, and the tests used to determine that status can’t see down to cancer cells smaller than 8 mm, so there very well could be some dangerous little buggers still swimming around in my body, waiting for my immune system to drop its surveillance, or stressors to mount to a point where the barrier has worn down and they can take hold again. In a way, I use the word remission as an illusion of control. Illusions mean everything. I choose to believe I’m cancer-free. I choose to believe I can live a full and fulfilling life despite my physical disabilities. I choose to live.
I came to Costa Rica to take part in a writing retreat with my friend and fellow hiker Anish (aka Heather Anderson) and to explore my book ideas with the other participants. Something that kept surfacing when I noodled on my memoir, was that I refuse to operate from a place of fear – the fear that would keep me from fully engaging in life. I refuse to give in to the fear that could keep me at home, wrapped in bubble wrap, instead of walking the beach in search of sea turtles and dodging crocodiles in the nearby estuary. That’s not how I’m choosing to live.
The retreat participants: Boo, moi, Heather & Johanna
I’m choosing to live, especially after watching Andrea Gibson’s documentary yesterday, Come See me in the Good Light. That film highlighted the fragility of what we are dealing with here. If Andrea can die three years after the first diagnosis, then so can I. Cognitive dissonance then reared its head when I read an enlightening Substack post by Oncologist Daniel Flora, When the End Doesn’t Come, about how many of us with incurable cancers are living far beyond their initial life expectancy and enter a kind of limbo where we know we might be like Andrea, but we also might live for 20 more years. WTF? Can you imagine living the rest of your life thinking that you might be given a death sentence every three months? Even when you are feeling good? Welcome to my world.
Jenny (or Bumblefoot) and I have talked about life in the way most people only achieve in years-long friendships. That’s the magic of meeting someone on a long trail, in a foreign country, or when living with stage-four cancer, or in this case, all three. She and I both expressed our delight in sitting across from one another and finding out we had a shared experience. The serendipity of it all. I relayed a story about when I had just arrived in London for grad school and was very uncertain that I had made the right decision. I sought out refuge from my oscillating emotions on a visit to the Museum of London. I walked in the door and was greeted by one of those life-sized cardboard cut-outs that you can put your face into. The cutout? He-Man, thrusting his sword into the air, calling upon the power of grayskull, much like I had done the previous year on the top of Blood Mountain on the Appalachian Trail when I received the trail name She-ra. Well, that museum exhibit and silly photo I took with my face shoved in the cardboard cutout became a sign that I was in the right place in the right time. I gave myself permission to follow the breadcrumbs of my curiosity and fully invest in life in London. I feel the same way about Costa Rica, not just because I was getting to learn from Heather and her process in writing three books about thru-hiking (heads up, you can buy her new book Farther now), but also because the main facilitator, Johanna Garton, grew up close to me in Wisconsin. I went to school in Waupaca, and she, 40 miles away in Appleton. I live for those coincidences. I live for those breadcrumbs. Coming to Costa Rica and investing in this retreat means I’m on the right track.
So I’m going to continue trusting the world. Continue to believe that I can do this, that I can live a full life despite the pain and uncertainty. I hope you can too.
P.S. Johanna has a few more writing retreats coming up this year. Soak in the pura vida vibes in Playa Grande and get some excellent feedback and direction on your writing project. Find out more here: Costa Rica Writing/Yoga Retreat
All the turmoil in the world and in my body has me asking again and again: What can I do? What in the world can I do to make it stop, or fix it, or support others who are hurt?
It’s probably no surprise that I’ve been spending more time on Substack lately since stepping away from other social media platforms, and this post caught my attention, so I had to add to it:
The uncertainty.
It always comes back to the uncertainty. Can we be ok with it? Will accepting the uncertainty make everything more bearable?
I used to think so. I used to be sure that I could adapt to whatever came my way. One of my favorite bits from the poem The Waking by Theodore Roethke goes:
This shaking keeps me steady. I should know. What falls away is always. And is near. I wake to sleep and take my waking slow. I learn by going where I have to go.
I would repeat these lines to myself when in my village in West Africa, stunned by my decision to live in a country where my do-gooder desire to “change the world” met with reality. I repeated the lines after my first big heartbreak when the guy I had moved to London to be with broke up with me and I was left living in a massive city where I didn’t know anyone. I repeated the lines when I fell in love with thru-hiking and didn’t know how to make that transformative experience last.
But somehow, the shaking this past year has me reeling in a way that I haven’t experienced before. I’ve discovered that I can’t tough it out, muscle through it, or ignore it like I might have done in other situations. BUT I have experienced something this past week that helps: genuine human connection.
My blog post last week was filled with uncertainty about my body, about what was going wrong, about trusting myself to understand the pain, and get to the root cause of it all. But when I uploaded the post and made doubts and fears public, what I did was let others see my vulnerability (scary!), and several of you responded in ways that helped me tremendously. I felt seen. I felt understood. I was taken seriously.
And I think that is the answer.
For all the problems with the healthcare system (and the world), a simple fact remains that a small group of people who are willing to listen to you, hear you, and genuinely want to help, can have a profound effect.
What happened? On Friday my physical therapist assured me that she would help me find the right kind of help. On Tuesday a former trail work volunteer of mine, who is also a retired physiatrist, took a look at my scan and assured me that help was possible. Throughout the week many of you responded with things that have helped you through similar situations of self-doubt and uncertainty. I feel seen, and know that care and connection is one of the most beautiful, human, and inspiring things you can do for another person.
What is the point of this life if we don’t try to alleviate the suffering of those around us? Can helping to alleviate suffering be the answer to all of it?
I think the real power is taking it one step further: what if we all actively worked to bring out the best in other people?
I’m a member of a creative freelancing group. We meet every other week on zoom and share struggles and tips for how to navigate the life of a creative freelancer. I’m still taking part even though I haven’t been working since my cancer diagnosis because the ladies are awesome. One of the items we’ve been designing for ourselves this year is a creativity bingo card (google it! you will find a ton of interesting results). I put one together with things on it like: buy myself flowers, go to coffee with someone new, and move at least 10 minutes every day. But the one that has blown everything out of the water so far has been: do acts of random kindness.
I was getting a coffee from a local place this week, and noticed a lovely tattoo on the barista’s arm. I complimented her on it, and her response was a beautiful smile that literally beamed back at me. As I was waiting for the coffee, I turned to see a man at one of the tables wearing a shiny gold puffy coat. I told him I loved it, and that the sun filtering through the window on it brightened the place up. And he beamed! He started talking and couldn’t get the words out fast enough because I had shown interest in him. It was an amazing experience, and I walked away thinking this is it! We need to see people, acknowledge them, listen to them, recognize their humanity, and in doing so, we can start to bring out the best in people.
On that vein, I have a show recommendation for all of you: Queer Eye. It will restore your faith in humanity. I promise. (Season 10 just dropped!) Every time I feel depressed, I put on an episode, usually cry a bit, and feel immensely better. The fab five really do bring the best out in people.
So I’m going continue with random acts of kindness, even when I fill my bingo card, and try to really see people, and try to bring the best out in those around me.
I finally had an appointment with my oncologist to go over all the great test results from the weeks before, but when I described the increasing pain I had been experiencing for months now (8-10 seconds after I stand up, a throbbing pain pulses through my lower skull and shoulders and lasts 5-10 seconds….often I have to close my eyes and grimace to get through it), she discounted my working theory that it had something to do with low blood pressure.
Frowning at my description, she said, “Lets order a cervical spine MRI to see if something else is going on.” I was relieved that she took the pain seriously and wanted to help me figure out what was going on.
I don’t have cancer right now, but something is going on that doesn’t seem right.
I had gone to yoga that morning, modifying greatly as I do lately, but after meeting with her, decided that I would minimize extraneous movements in my neck for now. The MRI was scheduled for Friday morning, and I had my surgeon follow up on Tuesday. I was going to get some answers.
Wednesday, January 14
I walked to my acupuncture appointment in the balmy 50-degree weather that had been plaguing Central Oregon this June-uary. Kym found my neck to be incredibly tight, but my shoulders were the most relaxed she had encountered during the year I had been visiting her. Hmmm, strange, I thought.
I reiterated my complaint of throbbing pain in the lower half of my skull and shoulders when I stood up, the same thing I told my oncologist on Monday, and that a neck MRI had been ordered. While I was resting with her needles tapped into my muscles and meridians, Kym consulted a physical therapist in her office and came back with the suggestion to tuck my chin into my chest when standing up, using only my legs. I practiced the movement and was delighted to feel less pain upon standing. The theory was that something in my neck was getting pinched when I was standing up, causing the pain. I walked home, and every time I stood up the rest of the day tucked my chin into my chest.
Ok, so what was causing the pinching?
Thursday, January 15
I was up in the wee morning hours again. This time it wasn’t the steroids that woke me up like last year during my chemo treatments; this time I was worried about my neck. I woke up and couldn’t get my sore neck off my mind. I had additionally started to feel a “pulling” on the back left side of my skull. It felt like things were progressing.
I kept replaying that week’s appointments and pain in my head in an infinite loop when I finally decided to get out of bed. I put on an episode of Poledark, a show both my mom and I had been watching on Netflix.
One particular scene and line stood out, and I rewound the episode enough times to write it all down:
You can not fight all the world. You can only make your own small corner a fairer place.
We are living in such a tumultuous time, I was living in such a tumultuous body, that I found real solace in that passage.
We can only do what we can do in our small corner of the world.
It’s easy to throw up our hands in despair when we see things on a world scale. That shared story has been true always and everywhere. It really doesn’t matter if it is the 1790s mining communities of Cornwall, or today in the streets of Minneapolis. We have to do what we can do in our corners. I was happily ruminating on that line and its implications when suddenly the potential of my situation hit me like a ton of bricks.
My body was trying to tell me something and I hadn’t been listening. It’s time to put my neck brace back on.
My brain had been playing doctor’s appointments over and over in my head, I kept focusing on my pain and the really tight and sore neck, not seeing the trees for the forest. I even had the audacity to tell a few people that I didn’t trust my body anymore…it didn’t know acceptable pain from damaging pain. I didn’t have cancer so why is my neck pain increasing?
Duh!
My neck pain was increasing because something was wrong in my neck.
My neck muscles were sore from trying to stabilize the bowling ball that was my head.
The pulling feeling in my skull had to be related from my body trying to stablize itself.
I had started to move my body instead of my head when looking to cross the street.
I had ordered a $90 “Level 5” CBD pain ointment for my neck and shoulders.
When I let my brain catch up to what my body had been telling me the last month, and I admitted to myself that something was very wrong in my neck, I was devastated.
I heard Kirk’s 4am alarm go off, and went into the bedroom sobbing so hard that he jumped from the bed in alarm. I pointed to the closet and was finally able to eke out the words “I need to wear my brace again, it’s in the closet.”
Something was wrong.
I was convinced my condition could be an emergency, so I messaged my surgeon to give him a heads up on my symptoms and to prepare him for the MRI coming in the morning. I also mentioned we had planned to drive to the coast for a friend’s birthday weekend, but I could cancel the trip if my neck was too vulnerable.
I didn’t hear back from the doctor that day, but the neck brace and pain meds were helping tremendously. I felt safer. The muscles that had been working overtime were able to relax, and I took my pills without wondering if I should.
My concerns were legitimate.
Friday, January 16
Thank goodness my MRI was at 6:55am. I didn’t have to wait long, and once I was in the machine surrounded by the clicking and buzzing, I almost relaxed.
Something was being done.
I expressed my sense of urgency to the MRI tech. Last time I felt this way I had been wisked away to the emergency room and surgery. She assured me if it was an emergency someone would get in touch.
I went home in a strange calm.
The My Chart results came in an hour later.
It sounded bad, real bad, and I couldn’t decipher most of it. Parts of my spine were mentioned that had never been mentioned before. “Severly compressed vertebral body fracture,” was a phrase I knew, but the severely part was new. A “mildly compressed vertebral body fracture” in a completely new part of the spine was recorded, my pain was likely due to a “degenerative marrow edema,” and other “scattered degenerative findings” told me one thing: my spine is crumbling.
I waited for a doctor’s call, but none came.
I slowly packed and prepared to head to the coast. During the drive I kept my phone close, but no call came. By 5pm on Friday night I decided I wouldn’t be getting a call, and I’d need to wait until my appointment with the surgeon on Tuesday afternoon.
The Weekend
I kept the pain meds on deck, and let myself experience the joy of fabulous company in a beautiful part of the world. Oh, and I ate a cheeto for the first time in a year! And a strawberry starburst! I wasn’t fighting cancer at the moment, so I let my guard down and ate some food because why not! My spine is collapsing!
The pain and throbbing continued, but as long as I wore my brace and took my pills, It was manageable and I was able to keep the demons at bay.
We walked on the beach, ordered pizza, put puzzles together, ate birthday cake, watched football, and walked on the beach some more. It was perfect.
On Monday morning I realized the “pulling” I had described at the back of my skull was really a spasm that was by this point, throbbing rhythmically at the back of my head. If I took pain meds the spasming stopped, so I kept on a steady regimine of drugs.
And this was it. This was the moment to put the “live now” blathering into action. If I was faced with a crumbling spine, which probably meant surgery, radiation, or some other combo of hospitals and extended bed rest, then I was going to have this day with the people I love and only focus on what was in front of me. That morning, it was a marionberry scone and delight at the jelly fish we found washed up on the beach. It was walking with the love of my life, my heart bursting with joy at spending the weekend with Brooke, Adryon, and Alex (Brooke’s brother).
I would die happy if today was my last day.
Tuesday, January 20
I was calm.
I woke, drank coffee, and made plans with Kirk to go to the surgeon’s appointment together later in the day. I slid into an easy morning.
I would have answers today. There was no reason to fear.
I had a phone interview with a woman working on a story about the Blue Mountains Trail, had a zoom with my creatives freelancing group, and heated up leftover curry for lunch while I watched more Poledark.
I started to get a little agitated when we got in the car to head to the hospital. I surveyed the clock to make sure we would get there on time…or early, I do like to be early. And by the time we walked into the waiting room my name was being called.
Yes!
Kirk and I sat waiting for the doctor to arrive and I surveyed the graphic of a spine on the wall. Ok, now my T3 was collapsing. The T3 supports upper body movement and respiratory function, and affects the lungs and upper chest.
Ok, got it.
The doctor came in, noted my c-collar, and I explained that I feel more comfortable with it on. I go over what I’ve been feeling, and he takes a big breath and explains that my spine looks stable in the imaging. I stammer, “But more vertebrae are collapsing, I feel like it’s crumbling.” He assured me I am not crumbling, and says again, “Everything looks stable, it looks really good in fact.” I look at Kirk in disbelief. “But, the pain?” Somehow, he doesn’t address the pain and the head and shoulder throbbing, and the skull spasms, other than to say nothing is wrong in the imaging.
It’s a short appointment. We walked out of there completely bewildered. “But!” I start again and again, “That doesn’t make sense!!”
I’m suddenly questioning everything.
Am I really feeling pain?
Is it all in my head?
But the My Chart results sounded so bad!
Even my oncologist said they looked bad, but she isn’t a spine specialist.
Am I making it up?
But what about the pain?
We drive in silence to Deschutes Brewery. I took off my neck brace. We walked in and ordered some food.
I’ll get a second opinion.
Maybe it’s not related to my spine.
Something must be wrong.
Maybe nothing is wrong?
But the pain? Is that real? I know it’s real!
I text my mom and some friends who were in the know. I hadn’t wanted to blog about my situation for this very scenario: maybe nothing was wrong. Maybe I was wrong.
This experience had been a week-long mindgame. I was convinced I was crumbling, then told I wasn’t crumbling.
What the %$##^$$#%!
Wednesday, January 21
Ok, maybe it isn’t my spine that is the problem
Google, what do you have to say about it?
I spent some time going through the MRI results, copying and pasting each finding into the search bar to decode the medicalese.
The plain truth of terms like “new sclerosis of the left C4 articular pillar” became much more innocuous when worded as “new hardening and increased density in the bone of the left C4 vertebra’s facet joint, usually a sign of osteoarthritis or wear-and-tear degeneration in the neck. It causes potential pain, stiffness, and reduced movement, and can be managed with conservative care like PT, anti-inflammatories, or sometimes injections.”
“Degenerative marrow edema,” became “fluid buildup in the bone marrow, often from degenerative joint diseases that causes pain, swelling, and restricted movement. It is treated with rest, anti-inflammatory drugs, physical therapy, and sometimes core decompression for severe cases, typically resolving over months.”
“Scattered degenerative findings in the cervical spine without thecal sac stenosis,” is “common, age-related wear and tear in your neck, but this wear is not compressing the main spinal canal where the spinal cord sits. This is a very common MRI finding, particularly in individuals over age 40, and often represents the normal aging process of the spine.”
Well shit.
Should I have googled all of this before letting my mind go hay-wire? Should My Chart results be shared without a doctor’s interpretation? Should I still get a second opinion?
She-ra Hikes 