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.
Did those few weeks even happen? The few weeks where Kirk and I lounged on beach chairs under thatched shade and watched waves the color of turquoise gently touch the white sand shore?
We went deep into sleepy vacation mode, and it now all seems like a quick dream.
And it’s June all of a sudden! Otherwise known as birthday month 🙂
Let the wild ruckus begin!
I have a feeling it will be similar to the birthday I celebrated on the PCT in 2006 at Walker Pass…
NEMO and I doing our last few miles into Walker Pass.Everyone around me wore birthday hats that day!Billgoat!The amazing Scott Williamson on his first successful PCT yo yo in 2006NEMO knit me this hat!Party time!
So many wonderful people are arriving this weekend for my party at Amber’s place, it’s going to be so much fun. She will be slinging her scrumptious wood-fired pizzas and I’m excited to be immersed in my most treasured place: among dear friends!
Back in the real world I got a news update that had me in a great mood. Apparently exercise is ‘better than drugs’ to stop cancer returning after treatment. That’s just the news I needed to hear. I need to ramp up my miles if I want to hike some of the Camino this fall. My default state lately has been resting as I’m still dealing with neck, shoulder, and body soreness every day….but now I have more motivation to walk despite the aches.
“Patients who began a structured exercise regime… had a 37% lower risk of death and a 28% lower risk of recurrent or new cancers developing, compared with patients who received only health advice, the trial found…Their weekly target was the equivalent of three to four walks of between 45 and 60 minutes, but patients could choose how they got more active. Some went kayaking or skiing, for instance.”
I mean, it’s like the world is begging me to keep hiking.
I still am getting caught up in the surprise of it all. That my life is 100% different than it was a year ago.
A year ago Kirk and I spent Memorial Day snow camping and ski touring up our local back-yard mountain, Broken Top. We skied in with heavy packs and plenty of snacks for several days…a prospect I can’t even imagine right now.
A year ago I was strategizing which trails to hike next and how to improve those trails through resource development…a la my trails consulting business.
A year ago I was hosting several conversations a month at Intentional Hiking, trying to encourage the trails community to take a more active role in the world we are hiking through.
Today, that is all gone. Well, not gone exactly; the trick now is to find out how to live what life I have now to the fullest, not knowing how much time I have left. Some argue we should always live this way….but I do know inside and and out that walking and hiking will still take center stage in whatever way I choose to live now.
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. 🙂
Regarding my birthday party on June 7 in Corvallis…please let me know if you want to come…we will be figuring out food and drinks soon and need a headcount. Cheers!
When I was growing up, I believed the world was magical and filled with wonder and surprise. A childhood spent in nature only confirmed it. And then there were the movies and books I read. I already mentioned the all powerful Wizard of Oz, but this past week I’ve been going down the rabbit hole of all the childhood delights: Alice in Wonderland, The Neverending Story, The Last Unicorn, Mary Poppins, The Princess Bride, and most of them hold up. Screen time back in the day wasn’t like it is now. I would watch these once a year, or once we got a VCR, maybe monthly, because most of my time was spent outside…my mom would push me and my three brothers outside, and I am so grateful for that now.
Do I still believe in magic and majestic adventures?? I will admit that the wind has been taken out of my sails these past eight months (eight months of sickness so far!!!), but the magic has shown up in many of my relationships with you, and I find I’m so rich in amazing people in my life.
And now that things are about to change, I can dive back into the wonder and awe that nature brings into my life. My hiking will be different now, but I know it will continue to bring complete strangers into my life and that they will quickly become great friends. And it doesn’t even have to be a thru-hike. I had an incredibly moving walk this weekend. Of course, spring had a lot to do with it, Bend is practically bursting at the seams with flowers and birds, and green everywhere….which is saying something for the desert. My walk helped to wipe the darkness from the corners of my mind. A darkness that was dragging me down to its sleepy hopelessness. (That reminds me of another movie: Legend, the 1985 version with a young Tom Hanks!) I took a walk and had some fantastic laughs with friends, and the world became whole and hopeful and wonderful again. Even if this is my last spring, this feeling is life, and I’m quite in love with it all. A walk is the engine for all the feels.
But thru-hiking, man, it just doesn’t get much better than that, and finding a good hiking partner that helps you see color is a real gift.
Check out this video I made of a short thru-hike of the Sunshine Coast Trail with Nemo back in 2018.
This sums up the feeling fairly well:
Will I carry a pack again in the wilderness? Will I be able to immerse myself in the far backcountry for weeks at a time? I don’t know, but I do know I have to make peace with this new body, or this new reality. And work? What the heck am I going to do if the focus of my business before was hiking a long trail to evaluate how to make it better, safer, easier for hikers to be successful? To make new trail resources and help a trail organization communicate with their hikers? Maybe I can help develop more hut-to-hut or bnb-to-bnb type trails in the US (Europe is spoiled for them) since those might be the only trails I can hike for a while. Maybe I’ll revamp the National Recreation Trails designation (something I’ve been wanting to do for years now! And a post for another day).
The news I got this week has helped fuel these thoughts. I know, I know, you will say I buried the lead, but I had my scans this week and met with my oncologist, and…it’s working! I’m officially in maintenance mode!! That means no more chemo for now. He said my body was chemo-d out…and man, do I feel it. I am still so tired. I have no appetite, I’m still losing weight and am quite nauseous, but the farther away I get from chemo, the more my body should find its equilibrium. The treatments have been working and he said I’m responding really well to the Tegresso and chemo…the combo helped to knock the tumors back a bit, and some of my brain ones are completely gone! I mean, I still have tumors, and might the rest of my life, but they are in check now. I’ll continue with the daily targeted med indefinitely and hope that I can regain my strength. This is a life-long disease, but I can see a life again.
There were tears of happiness yesterday when I heard the news….I’m bursting with the news.
So, things are happening this May! I’ll be on the road a lot, and you might not hear from me for a while. I have some nature bathing to do, visiting family to do, and even a spot of vacation with Kirk…he has dealt with so much these past eight months. I hope you all have a Kirk in your lives who is there for you when something completely unexpected and wild is thrown at you like this was.
Don’t worry, I will still keep blogging…it’s my way of processing this whole thing, and has been the way I’ve been sharing my hikes with you for over 20 years now. You could fall down the rabbit hole of my hiking journals for weeks and months if you explore some of my past hikes in this blog. And there will be future hikes, I can just feel it. And I still have more I want to explore…more memories and past lives, it’s fun to rummage around in my youth to tease out the elements that have led me to where I am today.
10 years ago this month I started my thru-hike of the CDT. In other words, a lifetime ago.
I have some scans next week, the first scans since early February, right when my chemo started.
To say I’m nervous would be downplaying the swing of emotions I’ve been experiencing.
I go from: “I feel so much better, I bet this is all under control…the 27 brain tumors, the tumors on my ribs and neck and spine, oh yeah, and the one in my lung, they are all under control and I can go into maintenance mode starting next week without any further chemo or radiation. Wooo! I’m excited to find out!”
To: “My ribs still feel sore and so do my neck and shoulders, what if there are new tumors on my shoulders and the ones on my ribs grew. Oh, I’m going to be in chemo forever, I’m scared!”
There are so many things I’ve been waiting to plan until I get these scans—the next few months at the very least. Will I get to visit my parents and go on a vacation with Kirk? Will I have some time to breathe and get my energy back? Will my body recover enough for me to start doing some longer day hikes? Will I be able to spend big chunks of time outside camping and adventuring?
Will I get to raft the John Day River?
I can’t do any of things things until I get these scans done and meet with my oncologist next week. 😬
Ahhhhhh!
But the good news? I didn’t get sick in Wisconsin…at least yet. The trails conference had about 800 people there from all parts of the country and internationally….and we didn’t even have our federal agency partners there (too much chaos…people have jobs, they don’t. They have a budget, but not for travel. Ooops they lost their jobs again. All of this is crippling the very people we need to take care of our public lands. 😭)
I wore a mask most of the time, but it is still wonderful that I came home without a sore throat or a cold. My immune system must still be putting up a good fight!
Melissa and I in Madison…I went to high school and college with Melissa, some great friends came up to visit me after the conference. And thanks Anne for the photo!There’s that almost normal feeling again!
Maintenance mode of cancer seems like a swan song to me. To go months between scans, months of living a life. But that is when I will need to be most diligent…to eat clean, to exercise, to be postive, to plan for the future. That is when I need to keep the cancer at bay…yet I know it’s not a reflection of my goodness, my ability to do the right thing to prevent the cancer from growing…but it does feel that way. I’m good if my cancer doesn’t grow. I’m bad if it does. It doesn’t work that way, does it?
Have you been following Suleika Jaouad? Ever since I read Between Two Kingdoms, I’ve been keeping tabs on her. She has a new book out and a big huge book tour, but her cancer came back right as she was getting ready for one of the most exciting times. It can happen to all of us at any time. It’s sobering and scary. BUT, check out her new book: The Book of Alchemy…my copy should be getting here any day.
The yard is exploding in flowers…and weeds. I’ve been wanting to try to weed, but getting on my knees and digging in the dirt seems like a challenging prospect. I talked to my PT about it yesterday, and she suggested small spurts of work… bite-sized chunks of yard work and gave me a few poses to try out to prevent immediate fatigue, and I’m still nervous about it. I am also interested in trying a gentle aerobics session in the pool at the senior center, but she also cautioned me that those seniors can be deceptively strong…and to try not to keep up with them. It’s just so crazy to me. A year ago I was so strong and fit…and now I need to be careful of my energy when weeding. It’s just not fair.
Kirk and I just finished watching the new TV show Dark Matter (I love Jennifer Connelly BTW, ever since I would binge watch Labyrinth as a kid, she has been one of my favorites…David Bowie too! I know all the lyrics to the songs in that movie. David Bowie…swooon) The premise is all about multiple universes…an infinite number of universes and for every decisions or inflection point in our lives, there is a spinnoff of another life lived by another version of you with different outcomes. (It’s like another TV show I liked, Fringe). And I think, there is another Renee out there who doesn’t have cancer. There is a Renee whose cancer is more advanced, who already didn’t make it, who found it early, who doesn’t even like to hike…It’s infinite and mind-bending to think about. But I can’t go there, I know I shouldn’t go there, to think about me in a different context…I mean, what does it help the reality of now? To think what if we had found it early, and I recovered without it haunting me the rest of my life? To think what if I never got it in the first place, and I was planning a thru-hike of the Theodore Solomons Trail this summer? Nope…not going there.
Instead, I think about what I might do if my scans next week go well. The trips I’ll take, the relief I’ll feel.
Should I be writing updates when things are heavy and dark? Maybe that’s exactly when I should be writing updates.
I learned yesterday that a friend from college’s husband, who has stage 4 lung cancer with the EGFR 20 mutation (mine is EGFR 19) is not doing well and has moved into hospice. OMG, I keep thinking this is something I will move past, but it’s claiming people I know!
And some family members are really not doing well.
And more hair is falling out.
And my pet’s heads are falling off.
(Sorry, that’s a Dumb and Dumber movie quote that my highschool friends and I used to reference incessantly)
The gravity of my situation has been feeling so heavy lately. This last round of chemo really got me for some reason. I’m much more nauseous that I’ve been since the first round and can’t walk as far…and I am still struggling to eat enough to keep my energy levels up.
Enough! Chin up!
I keep hearing positivity is the key, but do I have to be positive every freaking minute? Can I feel the weight of this and cry and rage every once in a while? Of course. There are no rules, but are there? There are so many books that I’ve been reading about how to live with cancer, how to eat with cancer, how to survive cancer, and there seem to be rules….but they are different for everyone, so we can’t tell you exactly what they are, but know that if you don’t follow them it won’t be good, or might not. We don’t really know why some people make it out and some don’t. So do the right thing, we just don’t know exactly what the right thing FOR YOU is, so figure it out.
Ahhhhhhhh!
I know my body is fighting. Is that why my hair is falling out now, and I have no appetite? Or is that the poison of chemo working its way through all the cells in my body? Or is that the cancer advancing?
How about some good news? I made it to Madison after spending all day sick in bed the day before my flight. I even looked at flying out a day or two later, but ticket prices were RIDICULOUS to reschedule, so I put on my big girl pants, packed a puke bag, and hoped for the best.
I had a delicious breakfast where I felt like a normal person. Normal!
And I made it. Travel day wasn’t too bad after all, and I had a wonderful dinner catching up with Jasmine. We laughed over the “turkey vultures” bit (see the last blog if you don’t know what I’m talking about) and remembered that it really was “pig vultures”. We were trying to get under our little brothers’ skin after all. “Pig Vultures!” we would screech as we peddled away down the country roads. They would circle and circle the intersection on their bmx bikes, hurling insults back at us as we laughed hysterically and coasted down the hill on our bikes, giddy with freedom.
Jasmine!
It was fun to tell stories, and apparently, we lived about a mile from the Ice Age Trail…I knew we were close, but not that close!!! A national scenic trail was evolving in my backyard and I didn’t even know it existed! It was designated as an NST in 1980, I was three, so yes, it was most definitely there. I have to hike it. I have to live long enough to hike it. And Jasmine’s mom still lives in the house I know so well, she can be my trail angel! She just doesn’t know it yet. In fact, I have a friend thru-hiking it right now, and he calls it a pub crawl, so maybe I can arrange for some of my gear to be transferred from town to town so I don’t have to carry much, and there isn’t much elevation gain, so maybe this is a trail I can hike in my cancer years??
Whitney and I went out for dinner with Luke last night, the executive director of the Ice Age Trail, and we talked a lot about it. That’s the magic of these trail conferences: you get to meet the people that do the thing! And that thing is trails, which I love so much!
Jasmine also told me that she remembered that I was very philosophical when I was growing up, and remembered lots of deep conversations that we had during sleepovers. While dealing with a bout of nausea in the hotel room yesterday, I did finish watching Wicked online, the prequel to the Wizard of Oz. Then I had to watch the Wizard of Oz of course, and was immediately reminded of its influence in my life growing up.
Gotta love the saltines!!
Back then we just had a TV with a few channels. It was even before the VCR days. The Wizard of Oz would come on once a year around Easter (wait a minute….Easter is this week, in real life!). The story of a long walk, meeting kind strangers you ended up loving and having good and scary adventures with, must have planted the seed for what would become my thru-hiking life. That and the Ice Age Trail in my backyard (right by Fountain Lake where we spent sooooo many days swimming) and my dreamy philosophical nature.
Check out this map:
The x is where I lived, the circle is where Jasmine lived, and the + is where our other friend Katie lived. My freaking back yard!!!
I feel down, but then I start thinking about how many trails there are left to hike, how many places to see and people to meet, and I get excited again. And sure, I probably won’t be hiking the Hayduke Trail that I had planned to do in 2026, and the Great Divide Trail in 2027 for my 50th birthday, but there are plenty of other trails where I don’t have to carry 7 days of food and 8 liters of water on my back that can be added to my list.
I’ve had really good runs of sleep lately, and then there will be a night like tonight where I can’t get beyond the first few hours of good sleep (I can almost always fall asleep with ease, thankfully!) So here I am, before midnight! Gasp. And writing. I will most likely be up for a few hours and then will go back to bed, but I aim to enjoy these few hours, and what better way to honor the deep night than to write?
I had a successful chemo session yesterday! I was joking with my neighbor Jan across the street…we saw her and her husband Greg on their bikes just as we were getting home from my infusion.…joking that we celebrate being healthy enough to get poison injected into our veins. Totally ironic. Jan had her own brush with cancer a few years ago and is now living life to its fullest. Riding bikes to go get a burger for Greg’s birthday…they are both about 80! They go skiing, Greg makes rock art, Jan bikes to yoga, and they are both very civically involved. What good role models. 🙂 I’m so lucky to have so many people in my life who are busy living. Who spend every day (or almost every day) doing exactly what they want with the people they love. And yes, that involves those still working, too. I have always put emphasis on doing work that I believe in and that energizes me, and the end result of living in that manner is that I tend to surround myself with others living that way too. It’s a great gift.
In fact, when I couldn’t sleep before getting up, I was listening to an On Being podcast on just that subject. Give it a listen:
And I love that both the guests, Atul Gawande and Krista Tippit, gave a nod to Annie Dillard’s quote: “How you live your days is how you live your life.” You have probably read it before in my blog journals. It’s a question I have long kept at the center of my decision-making. I like to live as if each day would be full enough, joyful enough, rich enough to be my last. Before, it was never about death; it was about living a fun, fulfilling, inspired, adventurous life. I’ve had conversations with friends before when they were deliberating a heavy decision…I often say, “There are no bad decisions; some just may be more work than others.” I believe that. And also there is so much time! I look back at the 20-year-old me, and I’m so grateful that I threw my hat in with the peace corps. So many people put too much weight into the job decision right out of college; it seemed so critical that it will set the tone for the rest of your life, but in truth, there is so much time. I’ve had 20 different careers, and sure, now I can look back and draw the connective thread between them all (well, most of them, I still get hung up on the metal roofing gig!) and see how they all make sense. But at the time, they sure didn’t. It was following my curiosity and seeking to learn something from each experience. By taking on the position of student in my jobs, I was usually able to gain a skill that could be used later on, and then it often was easier to know when it was time to move on. Objective complete, next! What else is out there?
Of course, we are living in different times. Generations ago, people kept their jobs for their entire adult lives. Granted, they also had pensions and a social system and work culture that invested in them…we don’t have that now, and it’s much more accepted to hold many, many jobs….it’s now important to tell a good story about how and why you moved around so much.
Man, I’m still getting hung up on the whole short life span with a stage 4 diagnosis. I’m also still determined not to let that slow me down in the “maintenance phase” of life after chemo. I also realize that when I wrap up this first round, it might be the first of several chemo cycles, but hopefully, there will be long phases of maintenance in between where I can live a semi-normal life. It’s hard to fully conceptualize, though. I started seeing a new PT who specializes in oncology patients, and she was encouraging me to think of my daily energy battery as having a finite life. Even walking slower will help conserve the battery, so walk slower, strive to only have one doctor’s appointment a day….to be very conservative with my energy so I’m not totally toast at the end of the day. And I have been. I tend to live my best life before noon or early afternoon and then retire to the bedroom to nap and rest the remainder of the day. Can I get better about spreading my energy out? Will I have more energy when the chemo is done? I’m not working, but I am still chair of the Oregon Trails Coalition board (although I’m about to bring on a co-chair to help share the duties, which will be a huge help!), and I’m also volunteering to help support Oregon Desert Trail hikers. I have tended to ODT hikers for nine years, and I can’t stop now! At least while I have energy. Finiate energy. And then the books, reading the books you all have sent me. I try to make time for that! I just started Mike Beaty’s suggestion, Ursula K. Le Guin’s Earthsea series (thanks Mike, loving it so far!) and an advanced copy of a book that Snorkle sent about the queerness of nature (fasinating!) and have another on deck, Thirty Below, a story of the first all-women’s ascent of Denali that my friend Lori, or Shake N Bake sent me, AND I just got a volume of poetry in the mail yesterday by an unnamed gifter, Marge Piercy’s Made in Detroit. Thanks stranger!
So many books to read, so little time.
How do I want to spend my days? Reading! Walking, visiting with friends and family, spending time with Kirk, netflix and chill (with popcorn), and travel…and fortunately I do have travel on deck. I’m feeling pretty rich right now. Rich in life (not to be mistaken with money…)
I love the excitement of a trip coming up. I keep adding things to my packing list, things I want to bring to Madison, things that I want to do in Madison.
I’ll be seeing one of my childhood best friends, Jasmine. Our houses were within biking distance from each other in the countryside of Almond. I would bike her home, then she would bike me home, and I would bike her home and vice versa. We could spend whole afternoons doing that, making fun of our brothers who liked to bike in circles at the intersections of our roads “turkey vultures” we would cry out as we peddled past. When we weren’t biking back and forth we might be climbing trees, or making forts in the cornfield, exploring the woods behind her house or mine, or making up ice skating routines in the yard ice rink her dad would make with the garden hose when it was cold enough to keep for a while. AND Jasmine hiked the PCT a few years ago! Kirk and I drove out to meet her and her partner at an Oregon trailhead near Mt. Hood. I brought plenty of food and beer, of course, and we marveled that two of us from Almond, Wisconsin, were PCT hikers. Love it.
Then I’m going to see all the friends that are actually attending the conference, like Allgood (my birthday brother…he is a June ‘77 baby just like me, although I’m a few days older). He just got a job with the hiking app Far Out and will be attending on their behalf. Then there is Steph and Chelsea and Jodi, and probably plenty more from the Oregon Trails Coalition, and then there will be all the other folks I met at trail conferences over the past few years. Exciting!
Then I’ll cap off the week with a visit from some high school friends who are driving up from Central Illinois. We all graduated from Dunlap High in ‘95, and as luck would have it, they just came out to Bend last summer for my birthday! Kelly, Melissa, Celena and Hanna got to see Bend for the first time, and we’ll get to hang out again…quite a moving thing because we all lost Missy less than two years ago to lung cancer. We’ll miss Carrie, our other high school bud who is back in Bend (she moved here about 8 years ago), but I’m spoiled; I get to see Carrie all the time 🙂
Hanna, Carrie, Me, Melissa, Kelly & Hanna’s daughter Emma, Celena must have been taking the photo. We drove to Pilot Butte for sunset after a wonderful birthday dinner.
To explain the top photo a bit….we drove up to Elk Lake to have lunch that day when we pulled over for this photo opp with Mt. Bachelor. NEMO sent me a she-ra crown for my birthday, and Kirk gave me some loppers, so I had to carry both around and pose as much as possible 🙂
So again, how do I want to live my days? With friends! Doing fun things!
The therapist I’ve been seeing even suggested to ask myself what this cancer year (years?) has allowed me to do, and if I’m honest, I’ve been able to refine my life down to the very essentials: spending time with people I love: Kirk, friends & family; reading; writing; and travel. And maybe it’s ok to be grateful? Oh man, that’s a hard one. To be grateful for the cancer while also fighting the cancer. It’s a complicated dynamic we have going on for sure.
Photo from my 2022 trip to the McDermitt Caldera where we monitored the area. Photo by Gary Callicott.
So close, yet so far.
I went in for chemo yesterday, but my platelet count was too low, so they sent me home in hopes that my numbers will be better next week and I can get the infusion.
Sigh.
I’ve just been exhausted this week. As in, I don’t have much energy to move and could sleep all day. My acupuncturist said it was probably low protein (BTW I have an amazing oncology acupuncturist in town, Kym Garrett; if you have cancer and want acupuncture, she is the one. I always come away with something extra, and she goes above and beyond connecting me with the right resources at the right time, she said my recent hair loss could also be explained by low protein.) Nooooooo, I’m not (or didn’t think) I was that vain, but when I put my hair in a ponytail recently and realized it was much thinner than I remember, it was a gut punch. 😮
I immediately googled medication side effects, and sure it could be a side effect of the chemo, of the tegresso, of low protein, and maybe I’ve had it going on for months…When I was in the c-collar, I had my hair up in a bun all the time so didn’t take notice, but wow. Now I’m starting to feel like I have cancer.
I could barely make it on my short walk loop yesterday, and felt like I was dragging my feet the whole way.
Ok. protein. I’ve started asking around more about diet, too. The facebook group for my mutation says there is no proven cancer diet that helps all types of cancer and all people, and you really have to find what your body responds the best to. The truth is I’m struggling to get enough protein by just eating vegan. Well, this week I haven’t wanted to eat much at all, which is another side effect of EVERYTHING. So I’m starting to experiment more with other proteins: eggs, yogurt, protein shakes, and some fish. I need to find what works for my body. I want my energy back! (And some hair, please).
I’m also soooooo ready for a change of scenery. I love how cozy we’ve made our house, but get me out of here! We are spending the weekend at a friend’s cabin and I couldn’t be more excited. Excited to get out of the house, excited to spend time by the river they live near, excited to have something different to look forward to. The days are bleeding into one another and I am in a haze of same-ness. And I still have the Wisconsin trip coming up. 🤞
Soon I’ll be on maintenance mode for the cancer (at least that’s what Dr. Schmidt says) and it couldn’t come at a better time because the oncology floor of the medical center I’m going to is closing in a few months. It’s pretty terrible and apparently a shareholder decision after all the medicare/medicaid hoopla going on in the federal government. Have any of the changes affected you? It’s affecting me, and it sucks. It will be a blow for the community because with less services, more people will not get the care they need on a timely basis, I shudder to think about how far my cancer could have gotten if Dr. Schmidt and Dr. Blechman hadn’t started my treatments immediately when I had my first appointment in January. If I had to wait another few weeks or month to see an oncologist, which is the way it was going. I shudder daily when I look at all that is eroding around me and the fear among friends who work for the federal government.
Oh, and if you care about one of the last intact habitats for the sagebrush steppe in the West, and the health of one of the biggest priority habitats for the greater sage-grouse in Oregon, please take some time and comment:
This is what I used to do, take groups of environmentally conscious volunteers out into the high desert to learn about important issues and do stewardship activities that support these landscapes. This was in the McDermitt Caldera in 2022 – I celebrated my birthday on this trip! There was nowhere I’d rather be. See more photos here.Photo by Gary Callicott.
A lot of us rose our voices in protest when this devastating project was given only a 5 day comment period (normal comment periods are 30 days…this may have been breaking the law to only give us 5 days), so I was thrilled to see our outcries resulted in the comment period being extended to April 25 at 4:30pm (pacific time).
Find more information here and comment: EplanningUi
The red line is my crude attempt at showing where the Oregon Desert Trail is in relation to the potential mining project.
And remember this photo? (I thought I posted it to my blog, but it was just my Facebook account)
This is the photo of a local rancher who does not want the mining to happen. He will lose his livelihood if the mine goes through, and this is the website of the People of Red Mountain, a committee of traditional knowledge keepers and descendants of the Fort McDermitt Paiute, Shoshone and Bannock Tribes who are working in coalition with allies to protect their ancestral homelands. When I led the group of volunteers to monitor this area a few years ago, the People of Red Mountain had countless stories for us about how sacred these lands were and are. I saw first hand what would be lost, the sagegrouse and Lahontan cutthroat trout that will be decimated, the Lahontan cutthroat could likely go extinct….and for an Austrailian company, No. Nope. Please speak out.
Location: Will send address once you register to attend.
Contribution: Suggested $20 donation per person to cover costs, any additional funds raised will be donated to Renee’s cancer fund (cash is great, we’ll also have venmo info available at event if you wish to donate that way).
Camping: see below.
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Festivities will start around 3pm. Amber will be slinging pizzas from her wood-fired food cart, Nomadic Pizza, from 5-7pm, and we’ll have a keg, wine, non-alcoholic drinks, and other snacks available.
A porta-potty will be on site for use. And if you plan on camping or coming back in the morning (see below for more camping deets), we’ll have coffee and bagels on Sunday. If you do stay overnight please plan on helping us clean up with a departure time by 10am.
Please bring:–
a snack/side-dish to share (afternoon snacks, desserts, late night snacks)
camp chair
mug/cup for beverages
a musical instrument (if you play!)
good vibes
yard games
Other notes:–
Please leave pets at home for the party, FYI – Amber does have a dog.
Your $20 will help us fund the pizza party and any left over $ will go to Renee’s cancer fund.
Space for camping at Amber’s house is limited depending on interest, please plan on tent only camping (for about 20-30 tents), or you can sleep in your car. Her address will be sent after registration along with some other lodging options (there is no real space for RVs but there is a near-by park & lots of hotel/air bnb options in the area too.) We suggest setting up your tent later in the evening so there is room for yard games and dancing and general merriment.
Amber only lives about 2 miles from downtown Corvallis – you could walk or bike to the party if you plan to stay in town!
If you are interested in helping out, we could use a few extra folks to help us with some logistics on Sat & Sun. Bellow there is a spot where you can indicate your interest and we’ll be in touch! Things like picking up the keg, helping direct parking, picking up coffee Sun morning, etc. (Oh, does someone want to make a birthday cake???)
She-ra Hikes 