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!
She-ra Hikes 