Camino de Santiago (Portuguese Coastal Route) Days 0



Well, it already happened: the crying at the cathedral part of this trip.

Let me set the scene for you: it was about an hour before sunset. The ocean was out of sight, but the sun had that look about it…that look of a coastal sunset where the light and air just felt sea breezy.


A woman was playing the violin, and tourists continued to come and go from the cathedral’s views over this ancient city. I just couldn’t stop the tears from streaming down my face. There was something about the moment, and not just the moment when the 30 + hours awake hit me; the moment was probably a combination of almost dying – but not, and being alive, here in Portugal, on the verge of another long walk. I was sobbing at the wonder of it all.

I know I will grapple with these big emotions while on this walk: Why me? Why did I live? Why did I get better so fast? Will I get just as sick again? And it felt lonely being up on the cathedral cobblestones, watching the sun set behind the Atlantic Ocean, not knowing a single person in the city…but I also knew that would change quickly once I met other pilgrims, once I told my story, and once I walked to the next town. But today, it was ok to be alone. Something in this journey had to be experienced alone, and these were my truths to grapple with. As I marinate in them, in the messy, traumatic, and joyful juices of them, I know I’m not alone, that all of you out there are wishing for the best and have my back, and I can feel it. Thank you.


I’m writing this the next day, and am sitting in a silent hostel well before sunrise, sitting on a couch that overlooks the Sao Bento train station. The view is a portal into other trips that will be taken today, and it seems appropriate, watching people get on and off the train – we are all on a journey.

Back at home, before heading off, the past week had been filled with packing and repacking. Switching out gear and switching it back again; I’m sure I’ll still have some regrets about what I did or didn’t bring, but that is the way it is – this type of travel is new to me, and as I’m finding on my first day in Porto, I’m quite glad I threw in things like my little Freerange phanny pack so I had something to walk around town with to play tourist instead of my hulking lumbar pack.

And the fun began as soon as I got on the plane in Newark. Portuguese families sat all around me, and I had no clue what the barrage of quick foreign words meant….especially because I abandoned the Duolingo Portuguese lessons about a month ago when I realized I’d be spending more time in Spain than Portugal. I didn’t have the bandwidth to learn both new languages, so instead, I learned none.

We arrived mid-morning in Porto, and I successfully navigated their metro system to take a train into the city center. I stumbled on the Mercado do Bolhão, a market of culinary delights, where I had my first Pasteis de Nata (a traditional Portuguese custard pastry) and some kind of savory pie bites. I walked around and oogled at all the fresh fruits, seafood, spices, wines, and more.


I still had my suitcase in tow, and next found a sporting goods store to buy some hiking poles before going to the hostel and dropping my luggage…the roller wheels don’t take to cobblestone too well, and it was all cobblestone, narrow streets, and threading between bewildered tourists…me being one of them, of course!

I finally found the hostel, which is in the train station, and from there headed out to find the cathedral and the beginning of my pilgrimage. I walked in circles, chasing steeples, but steeples were in every direction in this hilly town. Instead of the cathedral, I found cute cafes in the nooks and crannies of this puzzle of a city (did I say ancient? It’s one of the oldest cities in Europe). There was so much to look at, and with the sun and steep cobblestone streets added in, I found myself wilting.

I didn’t sleep at all on the red eye to Porto. I even bought a fancy new pillow that was supposed to keep my neck in a good position while sitting upright, but sleep didn’t come.

When I finally found the cathedral, I almost didn’t go in, but then decided I would at least try and get my pilgrimage passport and save a step tomorrow when the grand journey began. I stood in line and sat in awe of the history for a while while I gave my tired body a rest.


Later, finally at check-in time at the hostel, I climbed into my second-story bunk (not stoked on that!) and took a short nap.

I emerged as the day was cooling and found a spot to have some port (as one must do in Porto!) and ordered what sounded like cheese dip and some bread to go with, but instead I received bread and what looked like doritos covered in tomato sauce and melted cheese…with a fork. Ok, not quite what I was expecting, but I ate the chips and drank small tastes of white and the traditional red port while strains of Madonna played in the background. I wonder if they changed the music just because I’m American?


Then back to the cathedral where we started this post; I was back at the hostel before dark, and climbed into my bunk, for the day had ended. Finally.

Camino prep prep

Carrie and I got out of town last weekend.

Did some real pretty walking.

I’ve had some learning moments during my Camino planning. 

First, I had intended to wait to book most of my lodging until I got there and discovered how my body was doing, but the scarcity mindset set in, and I became worried that most bookable options would be booked, especially since I’m using a luggage transfer service. So I went ahead and planned out the whole 170 miles and choose mostly hostels (or albergues) with a few hotels here and there so I would be assured a good night’s sleep and some quiet on occasion. But 170 miles in two and half weeks means I’m going to be walking some long days. Can I do it? 

Then I went to book the luggage transport service to each spot, figuring the more I did from home, the less I would have to do there when I am faced with my body and the miles, so I looked at three different services: Caminofacil, Tuitrans, and Pilbeo. Many of the places I had booked didn’t show up on their ready made list of delivery spots! Arrrg. One service said I should change my plans to places that did show up on their list, but another said I could contact the lodging, get some info, and pass it back to them, and they would make it happen. So I went with those guys. I went with the flexible peeps who would have my back. And as I worked through the list yesterday, I discovered a lot of my lodging WAS on their list….their list being a hodge podge of addresses and names that sometimes didn’t match the exact title of the hostel, thus the confusion. Whew. It was more work than I had planned, but good to note if you plan to hike the Camino in the future and use luggage transport. Start your booking process with the transportation folks and book from their list.

In other news, I got my chemo port removed this week! Woot! If you haven’t seen a chemo port before, picture a quarter-sized, no, maybe a bit larger… a half-dollar-sized round disk that’s about a quarter inch thick implanted beneath your skin between your collar bone and your breast. It can be on the left or right side; mine was on the right, closer to the lung tumor. It has three raised bumps on the surface, so the skin tightens around it and looks a bit alien. A tube comes off it and is threaded through a vein in your neck so that sometimes people will say, “What’s that in your neck?” When it’s time for chemo, I lather the thing up with lidocaine cream and put a bandage on it before going to the hospital. The lidocaine will numb the skin, and the nurses use a special needle to puncture the skin and port….the three dots guiding them in like the lights on a runway. The tubing is taped to the skin for the multiple courses of drugs that will be injected directly into your vein that day. It saves your arms from being destroyed by the chemo. My chemo was the kind that only needed to be injected once a month, but others get it daily or weekly. So getting this thing removed is a big step towards living with active cancer in my past.

When talking with the doctors during the removal, they asked how long I had had it in, and how long my treatment was. All of their eyes got wide when I said I got the port in January, the chemo lasted until April, and I reached “no evidence of disease” by July. “Wow!” they said. “That’s fast!” I know, I quipped back. “And I had tumors from head to thigh! 27 just in my brain!” It seems surreal to say it even now. How did I get better so fast? Is my body really that responsive to the chemicals and radiation? To the diet changes, supplements, love, and positivity from all of you? I feel like I’m a Radical Remission example, except to get that moniker, you need to have been in remission for three years. I’ve been in remission for one month. I have a ways to go, but I’m off to a good start!

Lets see, what else does the Portugal prep prep look like?

I walked 9 miles the other day, that’s training!

How about my current iteration of a gear list:

In the roller carry-on
(transported each day)
Neck pillow (for the plane – that red-eye on the way over will be killer)
Inflatable pillow (for the hostels – works well to get proper neck alignment at night)
Silk sleeping bag liner (again…hostel beds)
Feathered Friends 40-degree Flickr Quilt
Stick roller (I’ve carried one of these since my 2022 AT hike after a 6-month bout with planter fasciitis)
Nylon grocery bag (small/packable)
Extra zip-locks of various sizes
Wise Pilgrim “The Camino Portugues” guidebook
First Aid kit
A few magazines (Harpers & Atlantic)
Chacos (some days of walking I’ll want to wear these)
Tech
Travel plug adaptor
Tablet/mouse adaptor
Mouse (for all that writing I’m going to do in the hostels!)
Clothes
Non-hiking clothes (depends on the room left in the suitcase -pants/jeans? t-shirt?)
Few pair of underwear & bra (shout out Bend brand Branwyn!)
2 pairs socks (I’m looking at you ToughCutie)
Merino wool pants (for sleeping & when cold outside)
Toiletries
Shampoo & Conditioner
Small chunk of soap
Bar soap container (small plastic something)
Contact case/solution
Glasses
Toothbrush & paste
Floss
Medications (oh, still so many medications)
Travel towel (probably my pagna from Burkina Faso)
In the Lumbar Pack each day
Passport
Paired down wallet
pen
Notebook
Phone (with Airalo e-SIM)
Wise Pilgrim Camino App
Caltopo App (I made my own map of the route and my nightly stays)
Tablet & keyboard
Small Power Bank for phone
Headlamp (only if I start walking early…you know, there will be sunrise-on-the-beach walks!)
Ear buds
Sunglasses
Chap stick
Sunscreen
Umbrella (in suitcase when not raining)
Waterbottle
1 Liter water bladder (for extra if I need it)
Ziplocks (in case of rain)
Small first aid
Daily medications
Epi pen (I’m allergic to wasps…like anaphylaxis allergic)
Sharpie
Pstyle & Wander Woman Wipe
Clothes to wear each day
Hat (not sure which one yet)
Purple Rain Adventure skirt (I designed the logo!)
Black spandex shorts
Tank top (not sure how hot it will be)
Long-sleeved shirt
Warm Synthetic Jacket
Wind Shirt (in suitcase when not needed)
Raincoat (in suitcase when not raining)
Rainpants (in suitcase when not raining – I usually wear a trash-bag rain skirt, but I figured this was front-country the whole time, I’ll be more civilized!)
Altras (I’ve never really worn them before, but they are light and I don’t need the ruggedness of my usual Oboz)
Orthotics (In case you didn’t know, I’m old)
Socks
Warm hat (in suitcase when not cold)
Mittens (in suitcase when not cold)

So there you have it folks! Next up: more walking.

Life Update 8/21

I returned to PCT Days last weekend….things started going wrong just after PCT Days last year…I’m still chairing the Oregon Trails Coalition, so was helping to spread the Fund Trails message with my friend Matt Ruddy from Trailkeepers of Oregon. Speaking of…we are collecting trail stories from people all across Oregon as part of a campaign to celebrate the many ways trails show up in our lives—and why they deserve ongoing public funding and support. What’s your trail story?

I know I’ll be feeling the echoes of my Dad’s passing for quite a while, and paired with my healing journey, it’s even more of an imperative to get out on the camino to walk out a lot of these emotions. Walking is the way I process the world, walking and writing together are the ultimate…so I’m excited that I have both on the horizon.

Back to the world of cancer stuff, I’m on the maintenance schedule now that includes monthly labs and meetings with my oncologist. I got my labs done this week and it still shows low white blood cell counts and low platelets…these are side effects of my daily cancer med, so it’s to be expected, but it also means that my immune system isn’t as robust in defending my system from infection, but I started a new treatment regimine this week, prescribed by my naturopath oncologist: Mistletoe! 

Yep, it’s the christmas kissing plant, or in my case, an immune cell super-power upgrade. Here is what mistletoe will do for me: 

  • Help my immune system to recognize and destroy tumor cells by activating tumor-killing cells such as macrophages, dendritic cells and natural killer cells. As cancer progresses, cancer cells mask themselves from the immune system by hiding their cell markers. Mistletoe helps to reverse this progress, exposing cancer cells to the immune system.
  • Blocks the ability of cancer cells to build new blood vessels 
  • Repairs DNA of cancer cells, making them less aggressive
  • Damages cancer cells’ cell membranes and structure
  • Promotes immune destruction of cancer cells
  • Blocks production of proteins that promote growth in cancer cells
  • Blocks ability of cancer cells to invade new tissues
  • Anti-inflammatory, modulates pain response

The fun part? Giving myself shots. The treatment comes in self-administered injections several times a week, and since the medication doesn’t have to be refrigerated, it should be all good to take to Europe with me in a few weeks.

So I have this new med, and when I return from Portugal, I’ll start another new med, Zometa, which is an infusion that I’ll get every three months to strengthen my bones. The internet tells me that Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures. So this will help me recover from the swiss cheese effect of the cancer growth on my bones, and it will be doubly useful because I am hovering around menopause, which also can lead to osteoporosis. I’ve been advised to avoid high-impact activities because of my increased fracture risk, and not that I’m going to suddenly start racing motocross or anything, but I’m hopeful this will lessen the risk if I do try things this winter like cross-country skiing. I’m probably still going to avoid downhill skiing for now (sob).

So even though I don’t have any active cancer, I’m still seeing doctors like it’s my job. Maybe this will lessen with time? Maybe? Because I’m on monthly labs and periodic scans and my medication is delivered by timed doses each month, this means I really can’t be away from home for more than a few weeks for the foreseeable future, and when I come off my anti-seizure drug this winter, I won’t be able to drive for three months! It’s hard to see a return to normal; this is a new normal.

Speaking of the new normal, I’ve been having trouble wrapping my head around how to live my life now and how to make decisions now. I am in that in-between place where I don’t know what going forward looks like. In my immediate future, I have Portugal, but after that??? 

I had started accepting that this may be the end, that it may be my last year or so, so I decided to live hard right now and do all the things. But when I got the scan this summer showing me that I didn’t have any active cancer at the moment, suddenly I could see a longer life… a future longer than a year at least, so does that mean I start saving for retirement again? Can I even entertain the possibility of retiring? All the while, I still need to make it to 5 years…and the odds aren’t quite in my favor, but then again, I’ve always excelled at exceeding the odds and have had good luck trusting the world. Do I stop planning and live now? Or plan just the next year and go big?? Or do I plan to be alive in 10 years? 5 years? 3 years? Do I start my business again? But I’ve also always wanted to write a book, so why not give that a shot when I have time (or maybe not)?

I don’t know friends. I guess I’ll start by going on a long walk.

Goodbye Dad

Dad as a pilot in the Air Force


The picture of dad finishing the Chicago Marathon with a giant grin on his face is one of my favorites. Sure, the photo was taken over four hours into his run, but he is doing it, doing what he set out to do and accomplishing his goal. We trained for that marathon together my senior year of highschool, but a chance at a state volleyball tournament veered me from the race that day, so I trained again on my own, years later, to finish my marathon. But it wasn’t running the race that mattered, it was the time we had together on the training runs that I remember.

Dad and I would lace up our shoes and head to the Rock Island Trail that stretched over 20 miles from just outside of Peoria to the little town of Dunlap where my brothers and I went to school. On weekends we would stride beneath the leafy deciduous trees for our long runs, not talking, just running.

I don’t have a lot of the photos I’m referencing with me, but they are the ones I remember. My brother wants to digitize the hundreds of photos we have from growing up, which is great. Here are my parents on their wedding day. Snazzy maroon tux Dad!



My Dad and I never really talked much, I learned to be comfortable with silence, with another’s presence without having to fill the space with words and distractions. We were comfortable like that. Like father, like daughter.

I can see myself in his goal-drivenness. And of course, my Mom is that way too. We decide something, we do it. We want to achieve something, and we work towards it.

I think I also got my voracious love of reading from him. He was always reading something, and I followed suit.

I grew up at the University of Wisconsin, Stevens Point, where he worked in computing services on the campus. I remember a fantastic mural of Leonardo da Vinci’s The Vitruvian Man made up of thousands of little tiles of animals and plants. I spent hours in the natural history museum wondering at dinosaur skeletons and other treasures. I took art and Shakespeare classes during the long summers, and I know my love of knowledge grew during those years.

When we later moved to Peoria, Illinois, so he could become Bradley University’s Director of Computing, he would walk out of the house in suits, a very respectable man. When I started attending Bradley after high school, I got a job in his department and would stop in to say hi a few times a week. Those summers, I worked with a crew cleaning computers in trashed dorm rooms, readying them for the next year, and still stopping in to visit with Dad from time to time.

Once I joined the Peace Corps and started my hiking career, I didn’t make it home much, but when I did, he and Mom were always moving in some new direction. While I was in grad school, they decided to build their earth sheltered home in the middle of the Illinois countryside, not far from the Illinois River near the little town of Havana. He called that poured concrete home with dirt on the roof their hobbit hole and it was the most lovely, comfortable nest…although cell phone signals didn’t often make it through the 5 feet of dirt on the roof.

It was a conventional life filled with lots of unconventional highlights, like the hobbit hole.

In 2020, it was undeniable. My Dad’s memory was going. In a gut-wrenching decision, my parents decided to leave their dream home in the midst of the pandemic and move down to Louisiana, where my Mom grew up. The promise of an extensive family to assist during this trying time and close access to medical care helped make the decision easier. The hobbit hole was at least an hour from a hospital, and only one brother and his family were left in Central Illinois to help out.

My mom still has multiple siblings in the Lafayette area, and they stopped by frequently to visit. Cousins would bring food, and as my dad’s dementia became full-blown Alzheimer’s over the 5 slow years of his decline, the help increased. When I came to visit, Dad and I would walk around the neighborhood every day. He loved his walks…much like I do. For a while they had a little German Schnauzer, Lily, and he would share the same daily joke with me on our walks, “She’s leaving a pee-mail,” he would grin as Lily lifted a leg on yet another mailbox. I would laugh and ask him about the air force again…those older memories were rooted deeper, and he could usually recall some tidbit with interest.

It was hard to see Dad decline into memory loss, and at the end, a vacant stare, but often with a sweet smile on his face.

Sweet is the right word for it. I was visiting for the holidays last year when I was diagnosed with cancer. At first, we didn’t tell Dad what was happening because we weren’t sure if he would understand or perhaps get upset. Instead, when he learned about my illness, he wanted to give me anything he could from his body to make me whole again. He offered up his veins, his blood…anything he could to help me get better.

When I got out of the hospital on Christmas Eve in 2024, I was able to go home with my parents, Kirk, and my brother Dan. It was the best Christmas present ever. And we still walked! By that time, my Dad had full-time caregivers with him at all times, even during the night. My mom was committed to keeping him at home where he was most comfortable, and while I was waiting to be stable enough from my neck surgery to fly back to Oregon to start my cancer treatments, we would walk. Dad and I holding hands, me with my neck brace on, shuffling along, and Dad with his Panama hat on, weaving on and off the sidewalk, our caregivers following close behind me. April on his side, Kirk on mine.

I didn’t know those would be the last walks we would take together, but man, oh man, they were everything. We didn’t always talk. We just moved at the same pace, side by side.

Dad fell this spring and broke his hip. Some kind of connection broke between his mind and his body, and he never walked again. Mom made him the most comfortable she could at home, and he was put on hospice care. I visited a few times, he sometimes recognized me, sometimes not, but we didn’t need to talk, I was sure he could feel my presence and we could sit in silence as we had often done.

We were all able to visit him one last time in June.



My Dad passed away on August 4, just a few weeks shy of his 77th birthday and my parents’ 51st wedding anniversary.

We all came together to share some wonderful memories of Dad after his passing. Jeff, Mom, Me, Nick, and Dan in front. ❤️



He was the best Dad.

Portugal Prep

Kirk and I took a day hike up to the base of 3 Finger Jack last weekend. It may look extreme, but this point is only 2ish miles from the trailhead! The worst part was driving up the washboarded dirt road, which was much harder on my neck than the hike.

I mentioned my intention to hike some of the Camino de Santiago thru Portugal in one of my last posts, and now, buoyed by all the good health news, I’m making it happen…and all of a sudden, the trip is soon, very soon (like September soon!) 

I’ll be writing here daily while I walk, and now my time is filled with logistics like: 

  • Whats up with the whole luggage transport system? Since my back/neck/shoulders still can’t support a pack I’ll be paying to have my roller carry-on bag transported each day. There are several companies that offer the service, and you only need to book 48 hours in advance, so that leaves room for serendipity…especially important because I don’t know how many miles per day my body will tolerate yet.
  • How do I book hostels, hotels, or auberges? Fortunately, many of these lodging options leave half their beds open for first-come walkers….In the day and age of cell phones and reservations, that is amazing, and again leaves some time for the hike to evolve as I see how the miles are feeling. I do have the first three nights booked, though.
  • Visa? Not needed
  • Money? Debit and credit cards will work, although I’ve had to check the international fees for both…since my trip is relatively short, just a few weeks, it sounds like getting cash from ATMs along the way will be an advisable way to go
  • Gear? I’m experimenting with a few different lumbar packs to carry things like a raincoat, umbrella, snacks, and water…I used the Gossamer Gear Piku this past weekend on a day hike, and loved how light it was, although the larger capacity (nine liters) means I can still put too much weight in it, like I did for a walk around town this week 😬. I have a Mountainsmith lumbar pack on order to try, although it comes off the shelf much heavier at 1.56 lbs vs the Piku at 8.9 oz.
  • Blogging? I thought I would bring my Surface tablet with keyboard to write at cafes along the way, but on my hike around town, it seemed heavy in the pack…I could just type on my phone like I do on regular backcountry hikes…we’ll see. I’ll take some more hikes with it and decide later.
  • Language? I’ve been taking some Portuguese lessons on Duolingo, but a big portion of the way will be in Spain (about 100 miles vs 70ish in Portugal), and I don’t have time to get good at two languages. Anyway, I hear English is pretty prevalent, and I can always rely on Google translate.
  • Sleeping? Since I’ll be in a bed each night and can transport whatever fits in my roller carry-on, I’m planning to bring my 40-degree feathered friends quilt, an inflatable pillow, and a silk liner for the beds. I hear i will need to be alert for bed bugs, so I am getting versed I need what to look for.
  • Food? It will be quite an urban experience, so I’ll have cafes and restaurants all along the way. I will also probably take advantage of grocery stores and hostel kitchens to buy and make my own meals…as for eating restrictions, I’m going to be a bit looser with my diet and eat what is fresh and authentic…I want to immerse myself in the experience, and if that means an occasional glass of wine or pastry with lunch, so be it!
  • Navigation? I bought the Wise Pilgrim guidebook and app, and I also made my own data book in miles vs kilometers, and have the route uploaded onto Caltopo, which I’ll use on my phone too.

There will be other questions that come up as I’m putting this trip together, and I’ll probably post once or twice more to share that with you. I’ll also post my gear list and anything else you might find interesting. Have other questions? Leave a note in the comments! 

I see this as the first of many Camino-style hikes I plan to take since my body is different now, and as I’ve mentioned to some of you, I see developing these type of hiking opportunities for the less-able bodied or people who simply want to eat good food and sleep in beds as a potential pivot for my business once I’m able to start working again. Exciting!

Testing out the Gossamer Gear Piku lumbar pack.

Life Update July 18

Busy living.

I’m officially changing the name of these updates from “Cancer update” to “Life update.” 

Why?

Well, it’s more forward thinking, I’m not giving cancer the spotlight anymore, and because my last scan showed NO EVIDENCE OF DISEASE!!!!!

You heard that right, I don’t have any active cancer at the moment!

Lets take a moment to feel it.

This news is almost as sudden of a change as it was to get the diagnosis seven long months ago; I’ve needed a beat to process it all. But at the same time things haven’t changed all that much. I still have the tumors (at least some of them), although now they are masses of dead cells that my body will eventually process and show them the exit.

I still have pain and stiffness. In fact wasn’t expecting to have a clear scan because I still have quite a bit of soreness and ache in my ribs. My neck and shoulders get incredibly sore after a long walk…Kirk and I walked 4.5 miles on a trail the other day and I was locked up for the rest of the afternoon. 

But it’s not cancer. I will now be healing from injuries that were caused by the cancer. 

I don’t have cancer! Right now…

That’s the other sobering thing about a NED “no evidence of disease” result of a PET scan, there is always the chance of recurrence. 🙁 A pretty good chance in fact. So in a way, this is when the real hard work starts! Eat right, exercise, stay positive, and live as hard as I can.

I’ve had a few friends this week send me tidbits from Andrea Gibson, a well-known poet who just passed away from ovarian cancer. Their words are beautiful, and it’s also heartbreaking because they had a recurrence of cancer a year after the original diagnosis. So, I’ve got to pull out all the stops to keep this body’s immune system up so there is no cozy place for the cancer to take root again.

In fact, I learned that the PET scan, while it detects active cancer in the body, can’t detect the smallest tumors under a centimeter. A PET scan uses radioactive sugar to make a map of how much energy the cells and organs of the body are using; the idea being that cancer will use more energy and therefore be picked up on a PET scan. So, 24 hours before my scan, I had to avoid any strenuous activity and abstain from sugar. I fasted six hours before the test, and when I arrived, was injected with the radioactive sugar and napped for 45 minutes while my body absorbed the stuff…all the places the sugar was consumed would show up in the scan.

And none of my tumors ate the sugar which means they aren’t active cancer tumors anymore, just dead cells.

Hooray!

I keep coming back to the fact that I will never be cured from this cancer. There will never be a guarentee that I won’t get it again. If I can make it 5 years my chances of not getting it again will be better, but that’s a LONG TIME! When it spreads the way it did in my body, its tentacles are deep. We we don’t get cured. 

My white blood cells and platlets are also still really low. That can be a side effect from the Tegresso, my targeted cancer med (which I’ll be taking for the rest of my life), so my oncologist will have me take monthly labs to monitor that. Low white blood cells mean I can’t fight infections very well, so I’ve been told to take precautions there. I’ll also need to get scans every 3-4 months, and I’m starting a bone-strengthing IV soon because the numerous lesions on my bones means they are a fracture risk…and I’m almost 50, so osteoporosis is a knocking!

So it’s with mixed feelings that I share this news with you. It’s good, it’s great in fact! But I still have so much to do, and there won’t probably ever be a “return to normal.” It’s going to be finding my new normal…and that changes all the time as I try to get stronger and recover some of the muscle loss. 

I’ll leave you today with this morning dance party I went to recently. It was the first time I had danced in almost a year. It’s definitely time to dance.

Cancer Update June 26

Every day is a gift. 

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. 

Then I did a podcast interview with Hikertrash Radio about my journey as well:

I’ve done countless podcast interviews in the past, and you can listen to a previous one I did with Hikertrash Radio here:

For even more podcasts check this out.

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!

Cancer Update June 12

Look at these beautiful people!

The only constant is change.

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.

Cancer Update June 3

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…

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.

Cancer Update May 17

Camp on the John Day River

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. 🙂