Cancer Update 2/16

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Last March I took one of those week-long, 7-day food, 6-liter water hikes in the desert portion of the Idaho Centennial Trail. And it was COLD.

Today’s visual:

I made it out of the bedroom and am sprawled out in the green pleather recliner found in the corner of the living room with my trusty wheeled cart of goodness parked beside me. Let me tell you about this cart! It has 3 tiers:

  1. Tier 1 (the top)
    1. I have a bamboo tray for books and journals: in it right now are the following:
      1. My medical/book journal with a uni-ball 1mm bold point pen (this is quite a delight to write with)
      2. Books: Bets by Carrot Quinn, World of Wonders by Aimee Nezhukumatahil, The Mission Walker by Edie Littlefield Sundby, One Long River Song by Brian Doyle, Writing Wild by Kathryn Aalto, and West with Giraffes by Lynda Rutledge
      3. Another bamboo tray with earbuds, an external power bank, a tablet, remotes to the bed, and the light behind the bed, 2 phones (I am still trying to transfer my old phone to a newish phone and it’s taking forever so I just keep the 2 phones around) and a headlamp
      4. Water 
      5. Another bamboo tray with personal items: glasses, contact solution, wet-wipes, hand sanitizer, various creams, and such
      6. A desk organizer with spots for pens, paperclips, cough drops, hair ties, letters to mail, it’s a veritable junk-drawer sprawl of stuff,
  2. Tier 2 (the middle)
    1. Bamboo tray of thank you cards (Glen Van Peski has been amazing at keeping me stocked with all sorts of cards and notes for me to send my thanks….he was one of the first people who impressed me with his thoughtful note-card habit. It’s always a wonderful feeling to get a handwritten card from someone you admire, and I am thankful he is keeping me in supplies so I can write to all of you! (by the way I need so many of your addresses…especially for all of you go-fund-me people, I’ll track you down somehow, or you can just email me your addresses??)
    2. Bamboo tray of cards that have come in (I love mail! Thank you!!!)
    3. Magazines (including my new subscription to The Atlantic along with the last edition from my old Harpers subscription) some coloring books, laptop, random reading magazines and such, and a section with my full plug-in earphones and sound vibration cuffs; 
  3. Tier 3: medications, overflow medications, pee bottle, extra water bottle, snack bucket, puke bucket; 
  4. The control center: on the back of the cart is the technology center. Kirk has it wired up so any cord or plug I might need is available via an attached power strip, so said power strip can be plugged in wherever I am: in the bedroom or in the living room and we can have the juice when we want it. This cart is everything!

So today. It’s late afternoon, so the winter sunlight’s low angel suddenly breaches the slats between the blinds to confront me full on. I bask, then wiggle, then wince to try and get away from the aggressive rays…I am unable to cover or protect, and am suddenly transformed into a large pinned bug with a new sympathy for ants and magnifying glasses everywhere. I manage a garbled “help” out to Kirk who is napping on the couch a few feet away, “Please close the blinds or move the sun or something!” The imagery of a fat crusty bug pinned to my chair is suddenly too much. Because I am that fat crusty bug. I’m pinned.

I do realize this phase of my illness is passing, and may not happen again. Does that make it bittersweet? The relying on my partner to do everything little thing from freshen up my tea to wheel me to the bathroom to put on my socks? We joked that we didn’t think we’d get to this level of intimacy for many more decades…the wiping of bodily fluids and soothing of back sores, that sort of thing, but here we are, doing it, and with a laugh on our faces most of the time. I guess if you can still laugh about it it can’t be that bad?

So my body might be able to break free soon, and I’ve been taking liberties. Kirk might say a bit too many liberties.

I’ve been standing a bit more with my cart in one hand, moving slowly about, or just standing to stand. My hips seem to be taking it ok, there isn’t a worrisome bone ache when I do stand, so that is encouraging. The radiation might be finally taking effect! I’ll do some more standing these next few days until mid-week when I plan to unleash a walker out of the garage and take some tentative baby steps, much like I did some 46 years ago in a farmhouse in Wisconsin. 

And they will have to be baby steps! My legs have shriveled up into ghosts of their former power (I know, I tend to glorify my muscular body from before times…the times when I could hike 30-miles a day across challenging terrain carrying 6 liters of water, 5 days of food, and enough supplies to be self-sufficient and solo for a week. (And sometimes those supplies included a book and a small box of wine…a girl’s gotta live, right?) I have always been intent on living it up, especially on solo hikes where I can do and be and exist with no one watching, no one judging, just me and the whole wide world. Now that’s a level of freedom I am looking to regain on the other side of this. Being alone in nature. It’s unlike anything else you can experience in your lifetime. It’s true acceptance and love.

But I digress. I’m a bug for a week longer, and then this brief phase of dependence drains away as I gain more muscle and movement. I will have certain limitations for a while longer of course. Driving…I won’t be driving until my neck brace comes off, and even then, I have a sinking feeling there might be another surgery waiting for me in the wings to address my 80% collapsed vertebrae. It will really suck to have to start the clock all over for a 3-month stint of recovery, but this is my ugly winter and spring phase. Let’s get all the sucky things out of the way now so that I can emerge this summer ready for fun and sun. (maybe????). 

There are still so many unknowns about what’s next…the latest development is almost too devastating to think about, so I’ve been somewhat avoiding it. My biopsy didn’t work. Somehow the piece of tissue they took from my back on December 19, and the full C4 tumor they removed on December 21 either didn’t have enough DNA to extract the mutation information they needed, or the sample was compromised and old enough by the time It was sent to the lab, or it just didn’t get where it was supposed to go, that we have to redo the whole biopsy now, sometime in the next week or two. My oncologist is beside himself in frustration. It’s frustrating. We thought we were waiting on a super duper long test, but in actuality, someone probably knew it wasn’t viable and was just biding time before getting in trouble. The flip side? Dr. Schmidt did say my body was responding to the chemo…I had some labs taken from my port (now found protruding out of my right chest above the breast below the clavicle) when I went into the clinic on Thursday morning for my second chemo treatment. My labs are looking good, I’m responding (although in what vague ways I’m not entirely sure), and he claims that he would want me to go through the four full rounds of chemo before introducing any fancy-schmancy mutation-fighting drug into my system anyway. So maybe we aren’t losing that much time after all, But we may be losing the time they would have to concoct or research the perfect pill combination that will send my cancer cells packing. It is what it is.

I think the other side of my “eventual silver bullet of a drug” news is that I could get more radiation. Maybe I want to get more radiation. I’ll have to talk to my docs. Now that proton therapy plans to wait until the magic drug takes effect, maybe it’s time to radiate my ribs and cervical spine some more. After all, I still have tumors growing in the bits of the C4 vertebrae they didn’t remove, I still have tumors all up and down my neck and spine, and man, what I would give for some bone-boosting rays to relieve some of that pain and give me the confidence to sit up straight again. But really, it’s the ribs. My stomach and ribs are feeling quite tender, my guts are feeling diseased and I’d love give them a break. We’ll see, this is a full care-team (care bear stare anyone??) effort, and everyone needs to be on board with next steps.

If I don’t get any additional radiation-between-chemo-sessions I could be looking at a few weeks of downtime. And by downtime, I mean sitting through infusions every three weeks until the end of March? And what would happen then? Would I be fully walking? Would I be in any more pain? Would the wonder drug be dispensed at that time and I can start re-engaging in life again? My re-engagement strategy looks something like this: daily sunrise walks along the river, a really good cup of coffee with foamed oat milk (a splurge Kirk and I got this week, a milk frother!), several trips to the senior center to walk in their resistance pool or do some light pool PT, yoga, walks with friends, more walks with friends, lots of reading…and the reading 🙂 so many fabulous books have been gifted to me these past few weeks that I’ll have enough reading material to last me for quite a while. Which, if you didn’t know, I like to read. 

When I was deposited in Zogore, my village in Burkina Faso for Peace Corps in 1999, my coping mechanism was reading. I kept track of the books I would lug back on my trusty green trek bicycle from the hostel in Ouahigouya once a week tallyed up some 230 titles. I tend to think my coping mechanism was a bit healthier than some others I could have indulged in.

I will start cooking. I’ve always had this romance with cooking, or rather eating. I love to eat, but often get impatient in the whole cooking phase because I just want the taste in my mouth as quickly as possible. But in this is a period of intentionally slowing down, and with my new-found respect and interest in vegan cooking and baking I want to take the extra time to do it right. 

There are cashews to soak, there are grains to grind, there are sprouts to grow. I hope to take delight in these culinary pursuits even though they never really captured my attention before. But I have some good teachers and role models too. Two of my besties have been impressing us with their culinary skills for years now, and have also had me and Kirk over for a few Sunday dinners lately. We sit and snack while Brooke and Adryon whirl and twirl around the kitchen making delight after delight. Our job isn’t half bad, we get to play with the new babies, Arlo, their sweet Great Pyrenees puppy who seems to double in size every time we see him, and Remy, his kitten companion. Those two are absolutely precious together, and even when Arlo gets a little rough with Remy, the cat hasn’t brought out the claws yet to bat him back or show him size isn’t everything. Booke and Adryon’s cooking, their wonderful home, endless kindness, generosity, and animal love have been a major life force for me these past few months. I know they will have plenty of tips and cookbooks to share with me should this cooking idea of mine really take off. (or maybe I’ll just eat good food at their house, we’ll see!). 

I did splurge on a bunch of juicing stuff when I first got home, and I do want to spend more time doing that. One of the websites I’ve been following has folks making and drinking copious amounts of juices throughout the day, and in some of the comments people share that they spend 2-hours making juice every day. 2 hours! We’ll see if I have time to commit to a 2-hour juice pressing regime. After all, I’ll be walking, reading, swimming, eating, cooking, visiting with friends, reading, puzzling (don’t want to forget puzzles!), writing, watching movies, playing Zelda (I hear that game might be up my ally), and more. 

So maybe I’m not ready to be out of my pinned bug phase after all. It’s pretty quiet and sweet in here. Not much is expected or demanded of me, in fact, I’m the one doing all the demanding. Snack please! Can you grab me some warm socks? I dropped a book, I dropped my snack, I dropped my sock and I can’t pick it up. Kirk will be ready for the next phase, but again, will he miss rubbing cream on my back and ushering me to the bathroom several times a day? Only time will tell.

This bug is going to get snug in her rug for another go at sleep tonight. Putting on a podcast has been helping to occupy the brain enough that it finds its way back into the dark slumber, so I might give that a try here soon.

Until morning….

Cancer Update 2/13

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Gittin it done – Packrafting the Oregon Desert Trail!

This blog could get boring real quick once routine settles in and I”m no longer wondering and wandering down the mental hallways of medical jargon and uncertainty, but that’s the beauty of a blog. You and I are on this journey together. I’m not really sure of where I’m going and what I will encounter…. much like on a thru-hike! 

If you have spent any time on this website, you will find hundreds of daily entries from hikes that span over 20 years. My daily writing practice when I’m hiking has become a valued part of the entire thru-hiking experience, and I expect this will be similar. What will I write about when I’m a month into my immunotherapy treatment and it’s working? What will I write about when the tumors are shrinking and I’m walking every day? Hang with me and we’ll find out 🙂 

Developments these past few days:

  • I finished up my first radiation treatments
  • I am about to start my second chemo treatment
  • I had a consult with the Proton Therapy Clinical Trial doctor in Seattle
  • A Peace Corps friend sent a pie from the famous Julian Pie Company along the PCT in Southern California
  • I struggle to sleep
  • I think about walking again

Not a bad list looking back on it! Do you want to hear more?

I finish up my first radiation treatments

As multiple doctors in my care team have mentioned, I am a complicated case. I have multiple serious issues going on at the same time in my body, and there has always been a question of what to address first so we don’t impede future treatments. 

Radiation has been at the top of that list. I went into a radiation deep dive a few days ago when I was getting started, and now I’m done! I had one full treatment focused on my ribs (front and back) and the rest on my hips/lower back. 

I think of the ribs as almost ground 0. That’s where a lot of these problems started (ignoring the source tumor in the lungs of course). Many of you don’t know the full story of how my troubles started last summer…to catch you up, I can point to Labor Day. Kirk and I spent Labor Day weekend up in the Wallowas in NE Oregon. We took the camper and did some day hiking into the high country and finished off the weekend with a splendid gathering with the Greater Hells Canyon Council folks just outside of Enterprise. If you haven’t already gathered from my 2020 ground-truthing hike of the new Blue Mountains Trail for GHCC, it was a fabulous experience, not just to help find a good alignment for a new long-distance trail, not just to help establish ways for a conservation organization to harness the interest and engagement of the recreation community to speak up on behalf of landscapes we walk through, but for the amazing people I met and continue to call friends to this day. NE Oregon and the people about a seven-hour drive from Bend are quite dear to me. 

Ok, back to the start of the injury. Kirk and I were driving back to Bend on Monday afternoon and I was all smushed up in the front seat of the truck. Legs tucked under and to the right, bags of snacks, and just random stuff tucked all around me. At some point, I crunched down to grab something off the floor and I felt a little tug in the muscle on my left ribcage. Oofta. I didn’t even give an outloud “ouch, but it was clear that I pulled or tweaked something in that twisted up front seat crunch. Hmmm. It wasn’t too bothersome, and I felt like it was something that a few good yoga sessions could stretch out and calm down. But, I didn’t end up going to yoga that week. Just a day later my family had a medical emergency. I got the call on Tuesday, and by Wednesday was on a plane to Lafayette, Louisiana where my parents live. 

I won’t go deep into details here, but my family needed help and I went to help. Over the next few weeks I tried to pitch in and be helpful, and one of those helpful activities was moving around some furniture for my mom. We remember it differently, but on a Sunday afternoon my cousin Lanie was visiting and we were either moving the bed, or changing the bedding, and I did a bend and twist move and was met with a pop and pain from my left rib cage, the same spot I had tweaked a week before in the truck. 

It was a doozy! 

I immediately cried out and knew something was very wrong. We wrapped me in ice packs, shoved ibuprofen down my gullet, and Lanie drove me to the nearest urgent care. An x-ray didn’t show any skeletal problems so I was given painkillers and muscle relaxers. Some googling later revealed that I had torn my intercostal muscles, or ripped the muscle from the bone of my ribs. The move comes with a trademark popping noise and immediate pain. 

There isn’t much to be done for such an injury: just hot and cold therapy, epson salt soaks, pain killers, and rest. But let me tell you! It was debilitating. I had trouble using my core muscles for anything, and had trouble knowing how to sit, sleep, and even hold or carry my body. 

From that point on in early September my rib muscles haven’t healed. The ribs are central to everything in how my body moves, and what is going on now! 

I have tumors growing on the rib cage, both where I tore the muscle from the bone, and other spots too. It’s as if the lesions are giving me a bear hug, and I have a constant achy-soreness from those spots even today. So that is where my first radiation treatment was focused. The plan was to stop those bear-hug lesions from growing, so focused on that first.

The next five radiation treatments were focused on my hip, pelvis, lower back, and left femur. All more bone-munching tumor spots. 

This is the site of another injury. Do you see partially why it took so long to get to cancer? I had all of these physical injuries going on we just thought they weren’t healing properly, or kept interfering with each other’s healing processes. I also thought perimenopause might be rearing its multi-symptom devilish head and impacting my body’s normal ability to heal and carry on. 

So this injury happened on November 1 on a snack run. Ok, It was a cheeto and wine run. 

Picture a rainy Friday afternoon. I had just finished up working for the day and was relaxing in my home office with some Below Deck and a hankering for cheetos. I hopped in the car to run the 2 blocks down to 7/11 (how terrible of me! To drive just two blocks. Sorry…it was pouring?) having left the house in my slippers (a delicious pair of glerups with almost no traction on the bottom). At the store I quickly turned down a wet aisle only to find myself flying through space in a slow-motion “noooooooooooo” moment. 

I had walked right by the “caution wet floor” sign in 7/11 to step off the carpet and into pain. I slipped and landed hard on my right glute, whiplashing my neck on the way down. I lay down on the floor after the fall and tried to get my bearings. I knew my right hip was hurting, and my neck was considerably re-injured (I’ll tell you more about neck injury another time…my neck and shoulders had been a major problem for the past month and this fall really set things back). 

The clerk came over immediately to check on me, and I was talking to her when I passed out. I was out for about a minute or two and was thoroughly confused to find myself on the floor of 7/11 when I came to. A police officer happened to be in the parking lot; he came in to check on me and the paramedics were called. As a wilderness first responder, I knew all of the vitals and assessment routines the paramedics went through with me. I was LORx4 (meaning I remembered everything about the incident, who I was, where I was, etc.) and my vitals were normal. 

They helped me stand up, I limped around the store a bit, and they gave me the choice to head to the hospital or go home. I chose home, I knew I was messed up, but I didn’t see there was anything a hospital visit would accomplish. I called Kirk to come pick me up but by the time we got home a short while later the pain in my hip and neck had only increased, so we decided to head to urgent care and seek some additional help after all. Even if it was some additional pain pills or a pat on the back, I thought it was worth following up on. 

We were offered x-rays of my neck and hip, which I took, but none of the imaging showed anything concerning, it seemed to be all muscular once again. My hip was tightening up and I sat in a wheelchair for the first time and was wheeled out to the car to go sit on some ice packs on the couch. 

Ok, so this is the injury that weakened my lower back and hip… these are the places the tumors also started growing sometime between November 1 and now. 

After the fall I started getting lower back spasms and had lots of stiffness and pain in my right glute. I started using crutches after that because it hurt too much to put my full weight on my right leg, but because I had also reinjured my neck, I had to be very careful not to put too much of the crutch weight on my upper back because that was spasming too. Oh yeah, and my rib tear was spasaming. I was a hot mess at this point. And if you remember, I had been planning to thru-hike the Pinhoti Trail in October with a backup plan to hike the Oregon Coast Trail, but neither happened because of my multiple injuries – AND this was all BEFORE I fell in 7/11. Have I lost you yet? This gauntlet of injury and pain (and resulting cancer??!?!?!) is quite bewildering. If you want to read how I coped with not thru-hiking for a month, take a look at my Virtual Oregon Coast Trail story map that I made to occupy myself while I couldn’t move). 

Ok the lower back and hip have tumors on them and we radiated that area, finishing up yesterday. Great! I think we can now move on to:

I am about to start my second chemo treatment

More back story needed! If you didn’t like words you would have stopped reading long ago, so I’m just going to keep spilling them out on the page for you. 

So, I was diagnosed with cancer in mid-December while visiting my parents again in Lafayette. This was a social visit, a pre-holiday vacation to spend time with my lovely parents. Yes, I was still in pain, and in fact had new shoulder spasms just that very week that I was concerned about, so enlisted the help of my Mom to find me some acupuncture that I could do during my visit to try and help calm things down. We even wondered if flying down from Oregon was a good idea given the injured state of my still-not-healing body, but my desire to be down there overruled any pain, and I made slow and careful moves through the airports until I was safely deposited in Louisiana. 

Over the next few days I started seeing a multi-faceted healer that my cousin Darryl Jude had recommended. I immediately liked Daniel Cadona. He combined modalities and seemed to be the first practitioner who wasn’t afraid to stray outside the lane of purely their massage/acupuncture/PT/chiro focuses. By the third treatment though, he had concerns. My body wasn’t responding in ways he was expecting and strongly suggested I get a CT scan immediately. 

This was on a Wednesday afternoon. My mom and I left his office, drove over to my aunt’s place, and made a plan. One other side note: my family is extensive and strongly entrenched in the Lafayette medical system. We have many nurses, doctors, and healers among us, so heading to my aunt’s to figure out the right next step was key!

We decided to go to an urgent care that could do a CT scan and that place thought I should go to another facility (I forget all the names here) so we ended up at an emergency room a short distance away where I was put through the CT scanner. 

My Mom and I were hanging out in one of the curtained cubicles back in the action zone when a few folks entered the room with a C-collar. Their demeanor was serious. All the air quickly left the room as they pulled up images of the CT scan, and they didn’t mince words. They went right for “Cancer.” 

The scan revealed multiple tumors in my spine, and my lung, and one tumor had completely replaced my C4 vertebrae and was pressing into my spinal column. They were so professional about all of it, and quickly put on the neck brace and explained they needed to put me in an ambulance and take me to the bigger hospital. My spine could collapse and I needed surgery stat. 

In the span of minutes I went from, “man, perimenopause sucks and is making my body heal too slowly” to “I have cancer and need to make sure I don’t get paralyzed. 

It was incomprehensible. 

My mom rode in the ambulance with me, and I was admitted for what was to be a week at Oschner Lafayette General.

I’ll talk about the hospital surgery story another time. I’m trying to get us to the point where I’m getting my second chemo treatment! Enough with the back story!

Ok. Lafayette was a world of its own, and for all the places for this to happen, in the place where I had cousins on every corner, many working in health care, my parents and uncles and aunts, it was the best place for me to be for all of it, and I’m so grateful for the way they took care of me during this time. My family is the best. 

During this time Kirk flew down and we ended up spending 2-3 weeks there until I was stable enough from the surgery to travel back to Oregon. There had been the question of where to get treatment. Many were advocating for MD Anderson just a short way away in TX, but I wanted to be in Oregon. My friends, my businesses, my life was in Oregon and it just made sense to start getting treatment there, after all, treatment could take months! 

It was recommended that I seek out a National Cancer Institute to get started, and it just so happens that Portland’s OHSU was one of those. I asked my Louisiana doctors to send referrals there (in fact my surgeon was from Oregon and practiced at OHSU! Now that is a crazy small world, he was just working in Lafayette the weekend I had surgery as part of a residency change. Ok, I can’t drop that without one more WTF coincidence. 

The first surgeon that we talked to, a surgeon that has operated on several family members and was well loved and known in the Lafayette community, was initially going to operate on my spine, but had scheduling issues, thus referring me to OHSU doc, BUT as were were talking, he asked about Oregon and come to find out, he Just partially retired and BOUGHT A HOUSE DOWN THE STREET FROM ME IN BEND. That seemed worthy of all caps. Can you believe it??????? I walk by his house every day (when I’m walking). 

I know the universe is watching out for me. All the prayers and vibes and positive thinking on my behalf have been working, is working, and this was just one more sign of that.

But how does this relate to my second chemo treatment starting? Geez. 

So I was trying to get referrals to Portland. Kirk and I return to Bend. Nothing is happening. I called OHSU, they said they’d get back to me real soon. I make an appointment with my primary care doctor. That doesn’t happen for about a week and a half after I get home. I’m basically sitting at home with cancer wanting someone to do something, and nothing is happening. 

I make calls and finally have some random appointments with a palliative care doctor. I’m grasping for straws at this point, and wasn’t even really sure what a palliative care doctor could or would do for me. But that’s when everything changed.

I met with Dr. Blechman at Summit Medical on a Wednesday morning. My friend Carrie was going to pick me up after the hour appointment, but soon I was calling her to come help me through the afternoon. Dr. Blechman took it all very seriously and shortly after meeting me walked down the hall to talk to Dr. Schmidt, the oncologist in the office, and shortly after I met with him, had another CT scan, got some labs done, and by the end of the day had my first chemo treatment scheduled for the next day. 

FINALLY!!! 

Since then I have put my full trust in Dr. Blechman, Dr. Schmidt, and Dr. Boehling. They are taking control and are making things happen.

So now we are playing catch-up with my cancer. It grew fast and fierce, and until we know what exactly it is (or what turned it on and what mutation is making things go haywire over the past few months) we are putting band-aids on. 

Perhaps ideally what might have happened is I had gotten a seamless transition between Louisiana and Oregon so that I quickly went into treatment to start working on this, but it didn’t go down that way. We might have gotten started on the genetic testing back when my first biopsy was done on December 19, but that didn’t happen and now it’s February 13 and we are still waiting.

No matter. I got my first chemo treatment on January 16, and I’ll be getting my second in just a few hours! Progress! That brings us to:

I had a consult with the Proton Therapy Clinical Trial doctor in Seattle

My Radiation Oncologist, Dr. Boehling, was clear from the beginning that I was a complicated case. Ha! Tell me about it! In addition to the tumors on my cervical spine, ribs, back, I had lots of tiny tumors in the fluid outside the brain…which means they are mobile and can travel through the spinal and brain fluids and be tricky to treat with traditional radiation. 

He thought I might be a good candidate for a clinical trial up in Seattle. (I covered some of this the other day) and I finally had the consult with that doctor yesterday. She was awesome. Dr. Halasz was thorough and reassuring and didn’t think I needed to rush into any proton therapy. Instead, she thinks there will be real progress when we know more about my mutation and can find out if there are targeted medications/immunotherapies to try first. 

She thinks my brain fluid tumors could be targeted once we know more about that pesky mutation, we can see how that’s working, and if needed I can always go up to Seattle for some treatments should I need it. I don’t have many symptoms of brain fluid tumors, I am **relatively young and healthy** and that’s that! Whew! That was a wonderful and reassuring call, and I’m not making plans to be in Seattle the rest of the month, So we wait again, wait on that mutation, and eat (and celebrate) because:

A Peace Corps friend sent a pie from the famous Julian Pie Company along the PCT in Southern California

We got home yesterday afternoon from a quick run into the hospital to get an EKG (in preparation for another medication I will take), and as Kirk is rolling me into the house in the wheelchair I spy a box that says pie.

“Is that a pie???” I ask him. There are many steps to getting me and all our stuff back into the house, so it was maybe 30 minutes later before he reported that yes, a pie! And hands me a card from Janeen. 

Janeen and I were Peace Corps volunteers together in Burkina Faso back in 1999! It’s been so crazy wonderful how people have been popping back up into my life from literal lifetimes ago with things like PIE! And a pie from one of the most famous stops along the Pacific Crest Trail in Julian. I’m not sure what Janeen’s connection is to the PCT or Jullian, or maybe she is just that thoughtful and knows my thru-hiking personality enough to think creatively about food and hiking, but WOW! What a treat. 

Yesterday was a day of celebration for all the reasons I’ve been writing about, so I happily ate a big warmed-up slice of Apple Mountain Berry Crumb. YUMMMMMMMM Thank you Janeen!!!!! 

This brings us to the present moment in fact. The moment where:

I struggle to sleep

I may be struggling to sleep, but I sure am enjoying writing in the middle of the night, sipping from my ice water I have perched on the little cart/stand Kirk and I built for all my bed-side needs, and munching on pistachio nut.

I know I need to sleep more, I haven’t been napping that much, and my body needs it, so hopefully that will change soon. So I’ll close this blog tonight with the final development:

I think about walking again

Dr. Boehling’s radiation focus on my lower back/hip has been to help me get mobile again. Thank you! The radiation should help with the pain and should harden up the bone so that I’m not at risk of fracture when simply putting weight on it. Through my treatments this past week I haven’t noticed a change in my pain, I still have what I call a burning sensation through my lower back, but with time the radiation should have the desired effect, and I should be able to start trying to talk again. 

I’m giving it a week and then we’ll pull out the walker that Kirk’s work buddy Greg is letting us use. 

I know not to push it too far too fast. I haven’t been walking in over a month now, and my legs are tiny little shadows of the muscular behemoths they once were

I stood around a little more yesterday afternoon and am playing with putting a little more time and weight on the body. The doctor said to let pain be my guide and to pay attention to the structural pain versus the general burning pain that I’ve been feeling. 

So I have a timeline and I have a goal. To walk. As simple and complex as that. My life will be much more mine when I can walk. Soon!

Cancer Update 2/11/25

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Hiking part of the Desert Trail with the DTA in Death Valley

It’s another midnight hour and I’m slowly waking up to the glowing screen on my tablet. It’s balanced on my lap with one of those bean-bag platforms. I’ll tell you, this contraption has been a game changer. I can balance bowls of soup on here, and if I wear a bib tucked into my c-collar, I can feast in bed with minimal mess. 

Sure I could lay back and try for sleep again, but I feel like writing, so I’m gonna write.

There have been so many things to adjust to with this new body over the past few months, and by far one of the biggest adjustments has been wearing the c-collar ALL THE TIME. I’ve been wearing it full-time since my back surgery on December 21, and if my timing is right, I have another 5 and a half weeks to go. It does come off at night now when I can fully rest my neck against a solid surface and lower the top of my bed down with the remote we got for our adjustable spilt king Tempurpedic bed (game changer!) This bed has been worth every penny, especially because of all the tumors in my back and spine and ribs, I can’t lay down by myself. And the split means Kirk and I have our own sides. I don’t have to wake him up in the middle of the night when I want to raise my head or legs slightly…. I can’t stress enough how important it is for him to get enough rest to deal with me. Really! There have been some rough spots when I was on so many medications and I wasn’t quite sure what I could take when, and with what, so I was getting up every few hours during the middle of the night to take another pill. That meant Kirk got up too. I had had a few instances where I thought I was self-medicating properly, but then would later find pills in my lap, unsure if they actually got in my mouth, or not.  On one occasion I was sure I hadn’t taken an oxy, only to go practically comatose an hour later when the second dose went into effect. We decided I needed supervision after that instance.

But we did finally get some help with spacing out the meds with one of the pharmacists…I have a detailed spreadsheet (of course I do!) that lists all the meds and the times of days I could take them and the hours apart they needed to be taken (some were every 4 hours with food, some every 6-8 as need, some once a day at morning or night). It was a spreadsheet of confusion and heartache, but she helped us whip it into shape with the primary goal of having as many hours of uninterrupted sleep as possible. Things have been much better since then. There is nothing worse than a sleep-deprived Kirk trying to deal with all the day-to-day stuff. We gotta get that man some rest.

But then there is my bladder! I can’t get myself into the bathroom on my own, and in fact our old mill house is so old that the door to the bathroom is narrow enough that we need to park the wheelchair in the hallway, then I need to stand up using the crutches (that my lovely friend Meredith is letting me borrow) to then crutch my way into the toilet. That production is too much for your average pee, so we have a system where I sit on some towels on the edge of the bed and pee into a jar using my backpacking psytle. It works! But I need Kirk there to help hold the jar, stabilize me on the bed, all the things. I’m trying to be more independent there because again, some nights I’m getting up every 2 hours and he is not getting solid REM sleep. I can certainly pee into a container by myself…well at least we are trying that technique for a few nights.

Back to my neck. I get a few hours of neck-free relief. But as soon as I sit up again, it’s collar on. The titanium plate that replaced my C4 needs to steady itself in my body with all the titanium screws that were embedded into the surrounding tissue, and apparently, my bone will grow back into the screen they provided…so I think that’s some of the sensation that I’ve been feeling…bone growing back! I know I still have tumors back there, so I wonder is the bone growing in compromised? I have lots of questions, and since we are still waiting on finding out more about my genetic mutation, the approach my care team will take, and mulling over some of the recent MRI test results that were posted to my account, I’m going to take us into a new segment of this blog called: 

Interpreting a My-Chart test result in the middle of the night with no doctor supervision

The real doctors out there might be shuddering as I go into this segment, but for those of you who get test results posted days or even weeks before someone explains them to you, you know what I’m talking about. How can you not investigate? 

This test result was from an MRI I had on my neck and spine on February 1. I know that I’m at risk of reading something out of context or doing a deep dive into a new terminology or new finding without having the full grasp of the situation. I know that, but here I am, publicly sharing them with you in the middle of the night. Weee! Lets go! 

I’ll attempt to break down the top findings of the MRI below:

  1. The primary finding was “Scattered osseous metastatic disease involving the left C4 pedicle, as well as the C7, T2, and T3 vertebral bodies as described above, with a severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.”
    • Ok, we knew about the other tumors and the big chuck of tumor left in the C4 pedicle, but the part of the sentence that threw me for a loop was “a severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.” What the what?? I spiral and cry. I’ve been sitting on this one for a week not sure what it really means…but I’m going to try to and wrap my head around it below. Hang in there with me.
  2. The next result was “Postsurgical changes of prior C3-4 and C4-5 ACDF, without MR evidence of hardware complication.”
    • Hmmm, ok, I’m reading that as a positive and they haven’t found any hardware complications with my C4 surgery spot. That sounds ok. They did fuse the C4 to the C3 and C5 with titanium screws to prop it back up (they said I might have gotten a smidge taller in the process). So no real new information here, moving on!
  3. Mild multilevel degenerative changes throughout the cervical spine as described above, most notable for mild left neural foraminal narrowing at C6-7.
    • I went to Chat GPT on this one (I know, I know, you can pass judgment on me another time, I happen to find it useful to reference and cut down on the crazy google results I get when I try to find answers…)
      1. Mild multilevel degenerative changes: This refers to the early stages of wear and tear (degeneration) on the discs or joints in the cervical spine at multiple levels (more than one location) in the neck. “Mild” means that these changes aren’t severe, but they are noticeable.
      2. Throughout the cervical spine: This indicates that the changes are present in multiple areas of the neck, not just one specific level. As described above: This suggests that the previous part of the report has detailed the specific levels of the spine where these degenerative changes are happening.
      3. The most significant finding is mild narrowing of the neural foramen on the left side at the C6-7 level of the cervical spine. The neural foramen is a space through which the spinal nerves exit from the spinal cord. Narrowing of this space can put pressure on the nerves, leading to symptoms like pain, numbness, or weakness. “Mild” indicates that the narrowing is not severe, but it may still cause mild symptoms.
      4. Further investigation beyond Chat GPT told me that Foraminal stenosis is like what happens to an electrical cord when you shut a door on it, wedging it between the door and frame. Eventually, the pressure on the cord can damage it, affecting how it conducts electricity. Likewise, foraminal stenosis can put pressure on affected nerves. Eventually, that can affect signals traveling through the nerve and cause nerve pain, and sometimes, permanent nerve damage. It goes on to say it’s quite common: Some studies indicate up to 40% of people have at least moderate foraminal stenosis in their lumbar spine by age 60. That increases to about 75% In people aged 80 and older. However, most people with foraminal stenosis don’t know they have it, even when it’s severe. Only 17.5% of people with severe foraminal stenosis have symptoms.
      5. So in the grand scheme of things, this isn’t one of those problems that is rising to the top of the list, and some of the complications will probably be addressed with one of the numerous cancer treatments I’m getting. The internet tells me a cure could be as easy as some solid rest and PT! And as long as I’m symptom-free, I probably don’t need treatment. Whew! 

Lets get back to that “severe pathologic anterior compression fracture of C7, with approximately 80% central and anterior vertebral body height loss.” though. What is that all about?

Turns out the fracture in the C7 isn’t new. I remembered something about the C7 when we were getting all the test results in Louisiana, and there was even a bit about a hole being drilled in the bone by a tumor. What other shenanigans did that tumor get up to down there? That vertebrae was completely overshadowed by C4 at the time. Lets go back.

An MRI on 12/18 reported: There is also a fracture along the superior endplate of C7 with mild loss of height. The remaining vertebral heights are preserved. And interestingly ”Osseous metastatic disease in the lumbar spine and sacrum, with pathologic fracture along the superior endplate of L2. L2 is the back rib where my biopsy was taken, they had mentioned a fracture in that rib, but for the life of me can’t imagine what it was from.

So what happened between December 18 and February 1? I have much more compression in my C7 with 80% loss of height. Lets look at where all these bones and things are in the back. 

Ok, lets break it down: Severe pathologic anterior compression fracture of C7:

  • Severe: The fracture is significant or advanced.
  • Pathologic: This means the fracture is caused by an underlying disease or condition (like osteoporosis, a tumor, or infection), rather than from an injury or trauma alone.
  • Anterior compression fracture: “Anterior” refers to the front of the vertebra, and “compression” means that the vertebra has been squashed or collapsed in a way that it loses its normal height. So, it is a collapse in the front part of the C7 vertebra (the 7th cervical vertebra in the neck).
  • With approximately 80% central and anterior vertebral body height loss: This means that the height of the C7 vertebra has been significantly reduced. Specifically, it has lost about 80% of its normal height in the central and front (anterior) parts of the vertebra. This indicates a major collapse of the bone structure in that area.

Yep, I gathered that, so treatment options? What might I expect? 

  • The treatment for a severe pathologic anterior compression fracture of C7, especially with significant height loss, will depend on several factors, including the underlying cause of the fracture (like osteoporosis, a tumor, or infection), the severity of symptoms, and the patient’s overall health.
    • Conservative (Non-Surgical) Treatments:
      • Bracing or Collars: A cervical collar or brace may be used to immobilize the neck and provide support during healing. This can help prevent further movement or strain on the fractured vertebra. (already doing that!)
      • Pain Management: Medications, such as non-steroidal anti-inflammatory drugs (NSAIDs), acetaminophen, or opioids (for severe pain), may be prescribed to control pain. Muscle relaxants can also help with muscle spasms. (already doing that!)
      • Physical Therapy: Once pain is managed, physical therapy may help to strengthen the muscles around the neck and improve mobility. This can also aid in preventing further injury and help with posture correction. (I’ll be doing that after the collar comes off)
      • Activity Modification: Rest and avoiding activities that could strain the neck, such as heavy lifting or twisting motions, is often recommended. (definitely doing that)
    • Treating the Underlying Condition (it makes sense that we will probably go this route first):
      • Tumor-related fractures: If the fracture is due to a tumor, treatment might involve chemotherapy, radiation therapy, or surgery to remove the tumor, depending on the type of tumor. (yes, yes, makes sense)
    • Surgical Treatments: (maybe some of this will come up? Now at least I know what some options might be…)
      • Vertebroplasty or Kyphoplasty: These are minimally invasive procedures used to treat compression fractures. In vertebroplasty, a special bone cement is injected into the fractured vertebra to stabilize and strengthen it. In kyphoplasty, a balloon is used to create space in the vertebra before injecting the cement, which may help restore some of the lost height in the vertebra.
      • Anterior Cervical Discectomy and Fusion (ACDF): If the fracture has caused instability in the cervical spine or if there’s nerve compression, surgery may be done to remove damaged or compressed discs and fuse the vertebrae together to stabilize the spine.
      • Spinal Fusion: If the fracture is severe and the vertebra is unstable, the surgeon may decide to perform a spinal fusion, where the fractured vertebra is fused with adjacent vertebrae to prevent movement and reduce pain.
      • Cervical Laminoplasty or Laminectomy: In cases where there is pressure on the spinal cord or nerves, procedures like laminectomy (removing part of the vertebra to relieve pressure) or laminoplasty (surgical modification of the vertebra to relieve pressure) may be performed.

Alright folks, I’m exhausted. That was a good long mid-night run of words and googling and I’m ready to lay down for a while again.

I have a new request of you though! I’ve been enjoying my morning cup of coffee (half decaf, oat-milk latte) with some music. I would love for someone to organize a collective morning music mix that I can listen to when I wake up and feel the coursing black gold running through my veins (bonus points for good dark roast coffee recommendations!). 

I created a collaborative spotify playlist called “Renee’s morning coffee playlist” and I put in one of my favorite morning songs, Three Little Birds by Bob Marley.

When I worked in wilderness therapy the first few years I lived in Bend we would often wake the kids up with a song. Three Little Birds was one of my favorites to sing. I don’t sing, but the sentiment and love in the lyrics seemed to transcend my morning voice. It was a simple pleasure we had out there. The morning song.

Three Little Birds
Song by Bob Marley & The Wailers

Rise up this mornin’, smile with the rising sun
Three little birds pitched by my doorstep
Singin’ sweet songs of melodies pure and true
Sayin’, “This is my message to you”
Singin’, “Don’t worry about a thing
‘Cause every little thing is gonna be alright”
Singin’, “Don’t worry, don’t worry ’bout a thing
‘Cause every little thing’s gonna be alright”

Here’s more technical stuff about it: How To Make a Collaborative Playlist — Spotify

Hopefully, it’s pretty straightforward. I enabled the playlist so that friends can add and reorder tracks. Lets try it out!

Cancer Update 2/8

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Radiation Deep Dive

I have been waking about 11pm, then midnight, then 1am. 

Each time I reach consciousness again, I either decide to get up and do something (doom scroll? Read? Write thank you cards?) or to release back into to the darkness. Usually, I choose darkness at least once or twice; put on my headphones, and queue up a soothing frequency playlist or chill podcast. And it does the trick, for a while, and the soft sounds usually lull me back into the night.

I am probably waking up because of the burning in my lower back. The burning comes and goes with the waves of pain meds that I do or don’t take, and can only be described as cancer eating at my bones. The cancer is making a mid-night snack of my pelvis, and in turn, it turning my core fragile and unreliable. This week though, there is a new burning on the block!

I’ve had three radiation treatments so far, with three more scheduled next week. The radiation techs line targeted rays of poison lined up with neat little tattoos they’ve imprinted in my skin, so they can get the same placement day after day. The tattoos are basically ink freckles, but they are my first, and I’ve been brainstorming ways to highlight or connect them when this is all over. Perhaps some kind of constellation art work or line art? 

The whole idea around radiation is that high doses of x-rays targeted at just the painful bits of my body will kill the cancer cells, or at least slow their growth by damaging their DNA. When the damaged cancer cells die, the body will slowly remove them (clean up on aisle one!). And that is likely to be part of the burning that wakes me up in the night. Unfortunately for me in this moment (tonight, not sleeping) is that it will take weeks before before the DNA is damanged enough for the big die-off. So I must be patient. I’m really learning to cultivate patience these days! But patience will pay off because the cells give up the ghost for weeks or months after the radiation ends. 

Soooo. When will I know that my back and ribs have recovered enough for me to use them again? And by use I mean walk? 

I’m not sure.

I think my body will feel better soon (less burning), my lower back might feel stronger, and apparently, the radiation will also eventually harden the bone, especially where the cancer has been nipping at the marrow. (correct me if I’m wrong people!). Once the bone is hard and I can put my weight on it, I know my world will change. I’ll be able to emerge from this cocoon that Kirk and I have built (a very lovely and cozy cocoon by the way!) and I’ll be able to go to the bathroom by myself, be able to feed myself, be able to bath by myself…I’ll be able to return to a kind of freedom that disappeared before I even knew to lament it when this all started in December…

But there are also side effects. The radiation can kill off the healthy cells too, with the main side-effect being fatigue, and of course, each person’s fatigue is different. What kind do I have? I’m not even sure yet. After my first treatment I felt a little foggy and took a short nap when I got home, but for the past two days I’ve been returning from the hospital and enjoying short visits from friends, not even ignoring the pull of a nap, just embracing the external love in these short visits that friends have been treating me to. The visits continue to be an energy source for me, so perhaps they are just counteracting the radiation naps…

Do you want to hear about a few more side effects? They are most definitely not sexy. In no particular order:

  • Hair loss (just in the areas they are blasting, i.e. my ribs and pelvis…that doesn’t sound so bad?) 
  • Sun-burn feelings. I’ve already started noticing a bit of raw and sensitive skin, and I stoked up on a variety of creams and salves to help soothe the skin should it erupt. Nothing on the surface has started bubbling like a sunburn though.
  • Diahhera. Honestly, diahhera would be a welcome change because I’ve been dealing with the opposite problem for months now because of the oxycodone and steroids that I’ve been taking. I mean, I don’t want a leaky bum, but maybe the two issues will counteract each other and I can just return to my usual constitution. (a girl can dream!) 
  • Lets see, other side effects could be nausea, and bladder problems, that sort of thing, but because the radiation is all focused on at or below belly-button level, I should not suffer the the memory loss or headaches that others experience. That might all come later anyway. 
  • To my uneducated-midnight-googling-understanding, the immediate effects of the radiation will be weaker bones that are prone to more fractures (send over the bubble wrap everyone!) but then in the next month the the bone will regrow, thus turning my Swiss cheese hip and lower back into more of a carbon steel network of integrity that can support my weight again, at least enough so that I can make it to the kitchen and make myself a piece of avocado toast. What will this mean for backpacking? Oofta. That I have no idea. There are so many other problems going on with my back and spine, that I am not even going to guess, but I do know that I’ll have to change my approach to long trails for a while and embrace the no-carry, luggage transport systems, or at least enlist the help of friends like the beautiful Julie Tadlock who offered to be my sherpa. (I just might take you up on that Julie!)

So I think that sums up my radiation situation. And of course, all of this can change, and probably will change. You see we still don’t exactly know what kind of cancer I have. I know! All this time and we don’t know?? When I was first diagnosed in Louisiana they took a biopsy from my back rib (one of the easiest places to access a tumor at the time), and also removed the giant nasty tumor that had eaten away at my C4. Both were sent for testing and essentially came back with the same results: the origin of the tumors were the lungs. So that just told us the basics, my cancer started in the lung, and those lung cancer cells were traveling my body and setting up shop in other places and growing. The big missing piece we don’t have yet is what particular genetic mutation is my cancer? (and get this, there could be more than one!). What turned these cancer cells on? When the doctors know what specific mutation I have (and recent estimates have put the total number of possible mutations for cancer at more than 10,000!) we can do so much more.

Cancer mutations

Ready for science class? All the cells in the body have the same genes, but each cell uses only the genes it needs. That is, it turns on (activates) the genes it needs at the right time and turns off other genes that it doesn’t need. Turning on some genes and turning off others is how a cell becomes specialized, such as becoming a muscle cell or a bone cell, for example. Some genes stay active all the time to make proteins needed for basic cell functions. Other genes are shut down when their job is finished and can be turned on again later if needed.

While we all have basically the same set of genes, we also have differences in our genes that make each of us unique. 

The ‘code’ or ‘blueprint’ for each gene is contained in chemicals called nucleotides. DNA is made up of 4 nucleotides (A, T, G, and C), which act like the letters of an alphabet. Each gene is made up of a long chain of nucleotides, the order of which tells the cell how to make a specific protein.

Some people have changes in the nucleotides of a gene, which are known as variants (or mutations). For example, one nucleotide ‘letter’ might be switched for another, or one or more letters might be missing, when compared to most other people’s genes. 

Gene variants can have different effects on the proteins they code for. For example:

  • Some gene variants might not have any noticeable effect on the protein.
  • Some variants might lead to very minor changes in the protein. For example, a variant might result in a protein that’s shaped a little differently and is therefore a bit less effective than the ‘normal’ version of the protein.
  • Some variants might have larger effects. For example, a variant might result in a protein that doesn’t work at all. 
  • Gene variants that lead to changes in proteins can affect all of the cells with that variant, which might even affect the whole body.

The overall effects of some gene variants might not necessarily be ‘good’ or ‘bad.’ For example, gene variants account for differences in people’s hair or eye color. On the other hand, some variants can lead to a disease (such as cancer) or increase the risk of a disease. These are referred to as pathogenic variants. (These are also what many people think of when they hear the term mutation.)

Ready to go further down the mutation rabbit hole with me?

Gene variants, including mutations, can be either inherited or acquired.

An inherited gene mutation, as the name implies, is inherited from a parent, so it’s present in the very first cell (once the egg cell is fertilized by a sperm cell) that eventually becomes a person. Since all the cells in the body came from this first cell, this mutation is in every cell in the body, and can also be passed on to the next generation. This type of mutation is also called a germline mutation (because the cells that develop into eggs and sperm are called germ cells) or a hereditary mutation. 

It typically takes more than one gene mutation for a cell to become a cancer cell. But when someone inherits an abnormal copy of a gene, their cells already start out with one mutation. This makes it easier (and quicker) for other mutations to happen, which can lead to a cell becoming a cancer cell. This is why cancers related to inherited mutations tend to occur earlier in life than cancers of the same type that are not inherited.

Inherited gene mutations are not the main cause of most cancers. 

An acquired gene mutation (probably what I have) is not inherited from a parent. Instead, it develops at some point during a person’s life. Acquired mutations occur in one cell, and then are passed on to any new cells that come from that cell. This mutation cannot be passed on to a person’s children, because it doesn’t affect their sperm or egg cells. This type of mutation is also called a sporadic mutation or a somatic mutation.

Acquired mutations can happen for different reasons. Sometimes they happen when a cell’s DNA is damaged, such as after being exposed to radiation or certain chemicals. But often these mutations occur randomly, without having an outside cause. For example, during the complex process when a cell divides to make 2 new cells, the cell must make another copy of all of its DNA, and sometimes mistakes (mutations) occur while this is happening. Every time a cell divides is another chance for gene mutations to occur. The number of mutations in our cells can build up over time, which is why we have a higher risk of cancer as we get older.

So, the way I understand it, something triggered a cell to mutate in my body. When? Maybe last summer when I started having injuries that didn’t heal? Maybe earlier…the lung tumor could have been be-bopping along slowing gathering mass for years, not really affecting much around it until a change of some kind turned it into overdrive.

But I do know that if there is a time to get cancer, it is now. Technologies and treatments have come a long way, even in the last decade!

Immuno-oncology research is changing the landscape of cancer treatment by harnessing the immune system to attack cancer cells. So, once we know what my mutation is, my doctors can develop an immunotherapy to train my immune system to find and destroy cancerous cells. There are several different immunotherapy types, but all immunotherapy works by training your immune system so it can do more to fight cancer. 

Soooo, because we don’t know what my mutation is yet, all the treatments I’ve been getting so far (chemo & radiation) are essentially band-aids they are slapping on my body to do something, anything, to slow the cancer growth down. The real work will start when we know what the mutation is, know what it responds to best (very likely chemo and radiation), with the added superpower of immunotherapy to really get in there and do the work to help my body rid itself of those snaggle-tooth cancer cells.

There’s More

Ok, there is more. It’s possible I have more than one mutation (very likely indeed) and the one outside my lung is a bit of a beast of a different kind. Last time I had imaging done there were something like 27 small tumors in and around my brain. Eeek. The good news is that my brain is still sharp, I’m not getting headaches (well a few small ones here and there) and the other slew of side-effects I could be feeling from brain tumors are holding off. 

What makes my brain unique is that most of the tumors are growing in the fluid OUTSIDE the brain. They are growing in the cerebrospinal fluid and leptomeninges, or the membranes that surround my brain and spinal cord. And I’m special! If I do indeed have this kind of cancer, only 4-7% of people with non-small cell lung cancer develop this type. Sooo. this type of cancer is in fluids, and fluids move, which can cause treatment issues for the normal pathways like chemo and radiation. Fortunately, my docotors are so sure I have this type, that we are am pursuing a clinical trial up in Seattle that will use a special kind of proton therapy to work on it. 

What is Proton Therapy?

Like standard X-ray radiation therapy, proton therapy can destroy tumors. Both treatments work by keeping cancer cells from dividing and growing. The advantage of proton radiation therapy is that my doctors can better match the treatment to my tumor’s size, shape and depth with the goal to do less damage to nearby healthy tissue.

Protons are charged particles, not rays. Physicians can direct protons to go into your body, give off the most radiation when they reach your tumor and stop right there. Less radiation hits the healthy tissue in front of your tumor. Almost none reaches the healthy tissue beyond your tumor. (There is little to no exit dose compared to standard radiation therapy.) Less damage to healthy tissue can mean fewer side effects, better quality of life and better long-term health.

So, good news? Goodish news? None of this is good news, but we are getting closer to answers, and answers will help us find solutions.

Keep on keeping on my friends!

Much love!

Cancer Update- 2/1/25 

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I am taking as much agency as possible in my fight against these cancer-laced-body parts. I have to feel like I have some control over the situation, even in the small ways. Some of those actions include:

  • Sound and vibration therapy – I invested in a Huso system – a vibrational frequency, human toning & world-class sound engineering patented system. A few times I day I put on wrist and ankle pads that are placed on major acupuncture meridians, and wear a fancy corded headset that streams healing tones that are organically sourced, uniquely calibrated, and transmitted throughout the entire body to deliver a total mind-body experience. You may have heard that some sounds and music can kill cancer, one of the highlight pieces of cancer-killing music is Beethoven’s 5th Symphony. This seems to be as much of a rumor as anything, but why not try all the things when faced with cancer? And I happen to enjoy Beethoven, so even if those pesky cancer cells continue to jam out to the tunes, I’ll be benefiting from some sound therapy anyway.
  • Food and nutrition – Now food and nutrition aren’t as cut and dried as I imagined it would be when I started looking into foods that would give me the nourishment I needed to weather radiation and chemo. I found an old article in Harpers that talked about the benefits of fasting a few days before and after chemo. Upon further research, “Emerging evidence suggests that fasting could play a key role in cancer treatment by fostering conditions that limit cancer cells’ adaptability, survival, and growth. Fasting could increase the effectiveness of cancer treatments and limit adverse events. Yet, we lack an integrated mechanistic model for how these two complicated systems interact, limiting our ability to understand, prevent, and treat cancer using fasting.” I’ve been losing weight, and keeping food down and energy levels up has seemed more important to me during this time. I’m in active chemo treatments and will be starting radiation soon, so keeping what little energy levels up is my main goal. I started wanting to eat a vegan diet, but have since been incorporating in a bit of dairy…those cheeses! I was born in Wisconsin anyway, and most of my doctors tell me to eat what my body wants. I haven’t wanted many meat products, so I’m eating lots of small fruit, nut, and vegetable plates, along with copious smoothies. There are even anti-oxidants debates out there, which can really throw you down the rabbit hole of overthinking everything. Of course, anti-oxidants are good, right? Numerous cancer-fighting cookbooks that friends have been giving me toute the nutrition powerhouse values of things like broccoli and avocados, but then there are articles like this that say…wait a minute: Should I Avoid Antioxidants During Cancer Treatment? My current technique. Eat mostly fruits and veg, have a cup of coffee in the morning, drink lots of tea, and let things come naturally.
  • Clearing clutter – Kirk and I have been living in our small Bend house for almost 15 years now, and even though it’s only about 900 sq feet, we’ve done a great job of stuffing every closet and shelving unit with the maximum clutter. My dresser drawers and closet has been a mess of too many t-shirts, pairs of carharts, workboots, hiking shoes, mismatched merino socks and such. I even had 5 bridesmaid dresses packed into the back of the closet from the late 90’s when highschool and college friends got married! Time to go. Nemo has been systematically going through the clutter with me and efficiently dropping it off at a donation center shortly after it leaves my sight. There is no time for nostalgia here, and my brain already feels more calm and peaceful when thinking about what pair of sweatpants I’m going to wear today. Oh yeah, I have invested in much more loungewear for my bed-ridden days. I might as well be comfortable! And a wonderful new addition has been a floor-length fleecy robe which makes me feel quite decadent. 
  • To work or not to work, going on disability?? – A friend and one of my first yoga teachers in town , Pam, has been dealing with a similar cancer journey to me over the past year. I wasn’t engaged with her struggles right away last spring/summer when she was experiencing what I am now, but friends and conditions have brought us closer together and her wisdom and very applicable experiences are soothing and helpful. In fact, we have the same care team (who is comprised of people who treat us like individual, unique, and interesting humans. It’s fantastic! Some even started researching the Oregon Desert Trail and my thru-hiking background before I even met them. They talk to me as an important part of the team that will figure out the best way to attack and beat back this cancer, and that makes a world of difference). One of Pam’s kernels of advice was to consider applying for disability and not working. She is an environmental lawyer, a very important kind of work these days, but she ultimately decided that this first year to 18 months is so critical to keeping to body healthy, calm, and balanced with good inputs, exercise, great people, and thoughts, that she hasn’t been working. I started looking into what claiming disability will mean for me, and also chatted with my accountant, and I think I’m going to take a similar path. I am thinking about finishing up some contract work in February, and then will throw myself into the deep end of long hours to heal, sleep, read, meditate, and plan hikes (I’m particularly drawn to all the Caminos now! Perhaps later this year when I have the energy I’ll head out for a few weeks on a pilgrimage where I don’t have to carry much weight, the walking is relatively mild, I’ll meet people from all over the world, and I’ll immerse myself in cultures so rich that I will be filled up. I’ll be honest though, when I first thought about putting a pause on the businesses I started so recently, It made me cry. I have invested so much and 100% believe that the work I want to do will help all hikers and help get more people outside, which in reality is how we will heal the world, by helping people see they are a part of nature, not separate from it. Now though I imagine a forced long-term sabatticle like this could do wonders for my evolution in thinking about humans and nature, and if I’m centering walking and hiking in my treatment plan who knows what good ideas will come out of it when I’m ready to start earning a paycheck again? And to be honest, I have cancer. A cancer that’s going to need a lot of treatment and work. I have to give myself time to deal with this…so I’m not planning on closing either business, just keep them going, minimally.  I can’t make any money on disability, or at least at first, but maybe I can work for free or volunteer my time when something seems like a good fit? The monthly disability income is extremely modest (around $1,700), but I’ve been a dirtbag most of my life and Kirk and I think we can make it work.
  • Ignore/or do my best to not worry about insurance – I’ve started getting bills from the week I spent in the hospital in Louisiana. When I talked to my insurance company they said because it was a life-threatening situation that the hospitals just needed to get credentialed with them, and the bills should be paid. I called up on a few new bills I received only to find out none of the Louisiana hospitals or doctors, or ambulances had billed my insurance, or even tried to get credentialed. This is frustrating because I had detailed conversations with all those people before I left the state, wrote out instructions on who to contact and how to get credentialed, and nada. WTF? My insurance company is going to try and help me call them to ask them to submit invoices, but why do I have to go to this level of work to deal with it? Having cancer is stressful enough, and I taxed out all my type-A personality techniques to make sure the Louisiana folks had what they needed so they could get paid, and now over a month later, nothing has happened. I’m trying not to let the blood-curdling dollar signs of dread fill my veins, but my heart quickens every day or so when I get a new bill notice. Yikes. I do think my insurance company will help me, but PLEASE, Oschner Lafayaffe General, if anyone out there is reading this, submit the freaking paperwork to get credentialed with Pacific Source so they can pay you please!
  • Surround myself with friends – friends have started stopping by, bringing meals, book recommendations, and flowers and I am all about it! I have always gained energy from other people and this is no different. Oh sure, there are days when I just don’t have the bandwidth, but everyone so far has been understanding, and sure, the visits are sometimes short, a quick hour to chat and catch up….and I love hearing about how others are doing. I want to live vicariously through their ski trips or rafting adventures. I want to hear about the school plays and the latest doggie antics. Even though the scope of my life has narrowed quite a bit, I want to participate in life, and people bringing me bits of their lives to share is quite a gift. For those of you out of town, a friend has even offered up her guest quarters (which are VERY nice by the way), so even if you want to come for an afternoon visit, but driving all the way over from the valley or out of state seems too much for a short trip, let me know and I can put you in touch. I want to see more lovely faces as time and energy allow 🙂
  • Walking – I’m not walking yet, but I will be! I’m thinking about walking all the time, and the only PT I can do since I can’t put any weight on my bones is flexing my leg muscles and rotating my ankles…so I’m doing that with abandon. My legs have never been so skinny, i’ve always had big meaty thighs that are really good at climbing mountains, so I’ll have a long way to go to work back up to those t-rex thighs, but I will, oh yes, I will!
  • Staying positive – writing these updates, getting your cards and DMs and donations are all going into my bucket of optimism and positivity. Thank you. Thank you. Thank you. I know I can’t repay the kind of support I’ve been receiving through this, so I will do my best to pay it forward, I think that’s a recipe for a better life anyway, right? Harness the goodness that has come into your own life and spread it out to others around you. It can be infectious. Let’s blanket the world with love, gratitude, support, and kindness.

Cancer update

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Cancer Update 1/19/25

Today finds me three days into my chemotherapy treatment, in a sort-of keeping food down, bit-nauseous-bit-pukey state. Yes, chemo is everything I have heard of, and nothing I thought I’d have to deal with.

I started treatment in Bend, which turns out to be a big relief because of all the modifications Kirk and I have been making to the house to help me get around and access the things I need during this time. Now the proposition of traveling a few hours to see my doctors seems unimaginable, and in fact, my oncologist lives just a few blocks from me (not that he’s making house visits…at least not yet!).

The agonizing period of waiting for treatment to start is now over, and things seem to be moving along at a pace I am having trouble keeping up with, but I appreciate the sense of urgency in my care team because yes, it is all quite urgent. I can’t walk anymore, so I am regulated to a wheelchair for now, so that’s adding a whole other layer to this uncomfortable state of being I find myself in. Apparently the tumor in my right hip/lower back is weakening the bone to a degree that my doctors worry about a fracture should I put my full weight on it. Fortunately the hip/lower back is the first place they will target in my radiation treatment, which should start soon. Radiation will harden the bone, blast away the cancer, and reduce my pain so maybe I can get some of my mobility back.

Kirk is taking a leave of absence to help me through this time, and I’m so grateful because I can’t do much of anything on my own any more, other than spill things and drop things on the floor out of reach. My fabulous friends in Bend have been keeping me fed and entertained, and will be starting a meal-train soon, so those who want to show their support through food (my favorite kind!) will be able to sign up to do so shortly.

I’m sure there is plenty more you all wish to hear about, but at this time know that I’m well cared for, at home, and getting through this moment by moment.

Much love to all of you who have contributed to my support, sent me letters and texts, and shown their love. I am so grateful to all of you.

An Answer, Finally! But…

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Friends, I finally found out what has been wrong over the past four months…it’s nothing I ever imagined…I have cancer 😞

I found out last week when visiting my family in Louisiana for the holidays, and had to have an emergency surgery to stabilize my spine and remove one of my vertebrae, which had been weakened by a tumor.

We are still waiting on a diagnosis and more, but am trying to stay positive and harness She-ra’s power to confront this thing.

What is 2025 going to look like? I have so many plans for the business, for my adventures, with friends and loved ones, but now I’m going to have to really lean into the mantra I have for myself on the trail: one step at a time.

My journey from here will be TBD, but isn’t everything always, anyway?

Some dear friends have organized a fundraiser for me to help me get started on the road to treatment, healing, and health. I have no idea what insurance, expenses, treatment, and adjusting my life to this new reality will be like, but I am grateful to have the support to face the next steps. The outpouring from friends and family has been incredible, and I know I’ll need all this positive energy to get to the other side of the cancer.

https://www.gofundme.com/f/renee-not-today-cancer

Hold your loved ones close. We never know what is around the next corner.

A Virtual Oregon Coast Trail Final Thoughts

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Where does the time go? I intended to write up some final thoughts about the virtual hike shortly after completing the journey at the end of October, and here we are, in the middle of December.

I would like to be able to tell you that I healed from my injuries and am solidly in the recovery phase and planning for my next thru-hike, but that’s not the case. My doctors are mystified about why my body is not healing, and have some advanced imaging planned in the next month or two that we hope will shed some light on the issue. I’ve had to continue building my relationship with patience, and slower, intentional movement. What a journey this relationship with pain has been!

I think a good note to end this chapter on comes back to the work of the Oregon Trails Coalition. We recently held our annual Oregon Outdoor Recreation Summit and Annual Meeting where we got to celebrate all the incredible work our coalition members have done in the state, and highlighted the work we have in front of us in 2025.

I invite you to take a few minutes to watch this video recap,  and please donate  to support our work into the new year and beyond.

Intentional Hiking – Year One

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Starting one business last year was exhilarating, starting two businesses last year was daunting. I took a minute to review the progress of Intentional Hiking recently, and was thrilled to see the collective impact of this discussion series in one place.

Each event focuses on a topic about our relationship with the environment, our trails, and each other. I had speakers on subjects from practicing creativity outdoors, collecting data for science, and designing new products to fit a need in the hiking community; each speaker chose a non-profit to raise money for during registration. Participants often donated modest amounts, $5 here, $10 there, and the totals for each event were split between the speaker, the non-profit of choice, and the business. I’ll let this graphic speak for the generosity of the folks who have attended and participated in the Intentional Hiking conversations over the past year:

Amazing!

My whole premise for this event series was that small individual actions can lead to larger collective action on behalf of people and planet. That small individual donations added up to over $1,375 to support organizations doing important work in the community and for the land is quite inspiring.

So what’s on tap for year two? I do have a few changes I’ll be making, like holding one event each month instead of two, forgoing the gear giveaways (which were honestly the most time-consuming part of this whole endeavor…finding and coordinating the giveaways), and I’d like to hold more in-person events. I found that real magic happens when we come together to have discussions in person…if your organization would like to host a conversation about a topic that is important to your community, let’s talk!

I’ve got one more event in 2024, a Trail for the Trees about the Bigfoot Trail, home to the world’s most diverse temperate conifer forest. Find out more and register here:

At the heart of both businesses has been the desire to address a need that I’ve noticed in the trails community….to improve the hiking experience and encourage action on behalf of the people and places we interact with when we hike. On that note I’m working on a new project. Yes, that’s right. I love trying to build new systems and implement new ideas…and this one is aimed at helping trail organizations and developers find and secure the funding they need to do their work. In my conversations with trail organizations over the past year and a half, that seems to be the lynchpin in their abilities to create the type of trails and communities they want, so I want to see if I can help create a system to allow them to do their work with more ease.

If you want to learn more please head here to download my project one-pager and join the mailing list for more details as this initiative develops. I’m in the information gathering/feedback stage, so if you have any thoughts or suggestions I’d love to hear it!

On the hiking front, I’m still reeling from a series of injuries that prevented me from hiking this fall. I’m solidly into month three of limited movement and pain, and that has been quite a challenge to my physical and mental state, but working on my businesses has helped me get through it. Designing a virtual hike of the Oregon Coast Trail has provided some relief, and I’m excited to say I’m starting to take short (really short) walks again. As one hiking friend said “motion is lotion,” and I’m doing my best to move even though movement still brings pain. This period in my life has been challenging. Still, it has also shown me that I have some amazing, supportive people in my life and that injuries, devastating injuries, happen to many of us. It’s a great solace to know many folks have gone through something similar and healed to continue their adventurous lives.

I can do this.

Thanks for reading folks, and thanks for your support and encouragement as I’ve hiked and evolved over the past 10 years of this blog. Here’s to 10 more years!

A view from yesterday’s sunrise walk.