Play this song while reading today’s update. It will help set the tone.
Progress!
I had the last of my radiation treatments this week…the last for a while at least.
We have radiated what can be radiated, and it’s time to give my new medication a chance to work.
New medication?? Yes, that’s right.
We have an answer! We have a mutation!
Even though the biopsy last week was a dude, the bloodwork provided the missing link. I officially have my mutation and plan moving forward….put your hands together for EGFR19!
OR not…we don’t want to encourage this thing to thrive any more than it already has. It’s time to show it the door.
So what exactly is the EGFR19 mutation?
Let’s dive in!
In short, EGFR is a protein found on the surface of both healthy cells and cancer cells. When the protein is damaged because of a genetic mutation, it doesn’t perform the way it should, causing rapid cell growth and helping the cancer spread. So we still don’t know why this protein was damaged, or how, but it must have been something to do with the state of my body last summer/fall; there was just the right combination of environmental and stress factors to make this protein malfunction and start allowing the cancer to have it’s way with my bones.
So the 19 version is actually quite common, and that means is has been studied and there have been medications used to combat it for quite a while. What a relief. My enemy is known, named, and now can be combatted.
EGFR19 accounts for about 60% of lung cancer mutations and is the most common activating mutation in advanced non-small cell lung cancer – that is, people who don’t smoke.
I’m ok not being special here. I’m fine with having the run-of-the-mill lung cancer mutation. I don’t have to be special all the time!
And the medications! There are proven medications I can take. Whew.
Word on the street is that I’m going to start taking Osimertinib soon. We need to give my body a few days to process the last round of radiation, to soak up the chemo that is coming today, and then bam….hello Osimertinib!
I’m happily using lots of !! today. It seemed like an appropriate day to !! it up.
The brand name for this drug is Tagrisso, and wow, do the drug companies take advantage of us cancer patients to get filfy rich off of our sickness. Just a bit of digging told me that taking this drug could cost somewhere like $17,000 a month for an annual cost of $210,000. WHAT?!?!?!?!🤯
Those are scary numbers. I can’t afford a month, much less a year of the stuff. Fingers crossed for insurance to come in. This is why cancer patients spend all of their savings and go bankrupt. Do the drug companies need to charge us $294.68 per pill? It’s criminal.
Back to what it does. Osimertinib is a Tyrosine kinase inhibitor (TKI), which means the drug will inhibit the EGFR signaling; in other words, it will slow or stop the growth of cancer cells.
This will be a once-a-day pill that comes with a whole slew of fun side effects, including diarrhea, rashs or dry skin (I’m going to need to be very careful in the sun, especially because the skin rash could look like acne with nasty pus-filled bumps). Oh joy. I might also have nail or hair changes, fatigue, appetite loss, and a cough or respiratory issues. But seriously, all in all, these side effects don’t seem too challenging.
Best of all? This drug can cross the blood-brain barrier, offering benefits in cases of brain metastases. That means it will probably work on the 27 tumors I have floating around in the fluid outside my brain. Hazzah!
So, if my body tolerates and responds to the drug, my survival rate could be as high as 88%! The median overall survival rate is 38.6 months…that’s over three years, which I guess is good? If I can milk the highest success rates out of this drug and do all the other things to stop or slow cancer like focus on exercise, diet, lifestyle, etc, than hopefully, I can live a somewhat normal life?
I still have the case of the collapsing C7 to deal with, so that’s a wrench in my body’s recovery, but I’ll be seeing someone at the end of the month about that. My collar is due to come off in a few weeks and I’m already working on some neck strengthening exercises so that I can manage the floppy neck, and soon I might be able to start driving again. Sweeeet. I know my meds will change quite a bit with the introduction of this new drug, and I hope I can come off most of them.
What else? I need to focus on getting my strength back. I’m walking now, hope to walk a bit more each day, I need to build my muscles back, and I can’t wait to get back into yoga. It still might be a month or more to start doing yoga again because I’ll have to wait a while for the meds to work on the neck and spine and rib tumors. Actually I have no idea how much time any of this will take. I imagine there will be frequent testing to see how I’m responding. And I need to respond because right now I’m still having significant pain in my neck/back/ribs, and I know my bones are compromised. They will need to have a chance to heal before I get all twisty on the mat.
So time. It sounds like I’m going to need to give my body time to knit itself back together and for the medication to have an effect on the cancer. I have time, though. I filed for disability this week, so that process has started, I have a ton of books to read, I have writing to write, I have some nice puzzles and other projects to work on, I have walking to do, I have friends like you to visit with, I have a birthday party to plan and get excited for, I have nintendo games to play and an endless amount of streaming TV and movie channels to watch. I have all the fun things that come to Bend in the year…hopefully I’ll be able to start interacting with the outside world more soon!
So yeah, you all are up to date now.
I have my third chemo treatment today with one more on the books for the end of the month, then the new medication to take.
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!
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.
She-ra Hikes 