Tag Archives: health

Life Update 8/21

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

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

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

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

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

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

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

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

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

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

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

Life Update July 18

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Busy living.

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

Why?

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

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

Lets take a moment to feel it.

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

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

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

I don’t have cancer! Right now…

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

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

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

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

Hooray!

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

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

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

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

Cancer Update June 26

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Every day is a gift. 

With so much uncertainty these days – both with my illness, my dad’s illness, and in the world – it seems the most logical thing to do is to focus on each day. What in the day makes it a success? What is there to be grateful for? It’s as if the most cheesy sentiments are my mantras these days…and they keep me going.

I’m halfway across the country right now, down in Lafayette, Louisiana, visiting my parents for a few weeks.

This is the first time in years that my three brothers and I have been with my parents in the same place at the same time; it has been a wonderful visit.

Before I left Bend, I had a barrage of doctors’ appointments, and once again, things are promising! The neck surgeon gave me the best news of all, my neck (a constant source of concern and soreness) is healing well, although I’ll probably have the neck soreness for the rest of my life . But the collapsed C7 vertebrae hasn’t progressed, so I have the go-ahead to start increasing movement. 

I just have to use pain as my guide. 

Easy to say, let pain be your guide… I won’t know it’s too much until the pain comes on, but there is hope in that guidance as well. He said the only things I need to avoid are axial loading activities, like standing on my head, and I can safely say I will be doing no such thing! I’m even starting to consider putting on an empty day pack and slowly adding weight over time. If I can walk with a day pack, the world seems much more doable…and my plans of a Camino journey even more likely.

The best outcome from these doctors’ appointments was the clearance to walk a section of the Camino this fall. More to come on that as I start to put that trip together, but I will be heading to Portugal for a few weeks in September! I’m thrilled at the prospect of stretching my legs along the coastal path, all with a bed to sleep in each night, coffees and cafes along the way, and meeting people from all over the world. Yes, I’ll be going solo, and I’m excited about the prospect of trusting the world in this next journey. I’ll be blogging daily again on that trip, it will be just like old times!

I’ve been sharing my story with a wider audience too. The National Brain Tumor Society asked to feature my writing on their blog, so they put together a wonderful little feature from my blog this year. 

How a Hiker’s Life Changed Overnight: A Metastatic Lung Cancer Story

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

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

For even more podcasts check this out.

What else is new? I did my first water aerobics class yesterday, and wow, am I sore! I had to modify my moves in the pool…too much jumping is still quite jarring to my spine…so I slowed my roll as needed with the lovely older ladies that were in class with me. My cousin Amy helped me get a pass to her pool because I quickly found that going for a walk in July in Louisiana was WAY TOO hot and humid for a comfortable jaunt. I either have to get up before the sun or head to the pool for any exercise while I’m down here. 

I have a busy, busy schedule when I get back to Oregon. A ton of doctors’ appointments await me, including a full body PET scan…cross your fingers for me that all my tumors are still getting smaller! Then it’s Kirk’s birthday, a visit from my Aunt Barbara, a Burkina Faso Peace Corps Reunion, a trip to see some friends in Eastern Oregon, PCT Days in Cascade Locks, and maybe even a trip to the Oregon coast. It may be too much, but I like to be optimistic and ambitious, so we’ll see! All the while, I need to ramp up my miles so I have hope of hiking 5-10 miles a day on the Camino in September. 

I’m taking each day as it comes, but also giving myself things to look forward to. And I have so much to look forward to!

Cancer Update May 17

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Camp on the John Day River

I’ve been out in the world for a couple of weeks now, and it’s funny how quickly I can revert my thinking and actions to those of pre-cancer me. Sure, I do feel fragile almost all the time, which tells me my complete lack of pain meds isn’t necessarily the way I want to go. When I do take meds, that’s when the illusion is almost complete. That’s when I don’t feel my neck and spine still adjusting to the titanium plate and additional collapsed vertebrae…at least I think that’s what I’m feeling? I won’t meet with the neck surgeon again for another month. I have questions for the surgeon: can I do yoga? can I put a pack on? I’m guessing from the way things are feeling that no. No, not yet. 

But yes, the farther away I get from my cancer nest (that is my adjustable bed and trusty cart filled with all the medications and books and diversions that I’ve been relying on these past five months), the more normal I feel. Friends and family tell me I look great. I’m up and about and going on raft trips and flying, but then I get tired walking up a hill and get dizzy when I stand up too fast. The illusion is thin.

I know I’m heading in the right direction though!

Five days of rafting on the John Day River was blissful. It was much colder that I expected, so I was almost always covered up. Immersing myself in the watery wisdom of Oregon’s longest undammed river was very soothing, even though I was quite limited in my time off the raft.

I returned from the river trip quite sore and worried that I had overdone it. The cot and thick paco pad I slept on helped me feel better during the trip, but I was still quite exposed to movements and actions that I hadn’t experienced in months. 

Just look at that basalt!

Captin Kirk on the oars

And then I’ve had to rearrange a lot of things so I could spend some time with family. Time that has been overdue for many reasons. I’m not going into much of the family dynamics now, but needless to say, I’m not the only one who has been going through a hard time this year. 

Today the rain is raining, the yard is bursting with the change of seasons, and I’m packing for yet another trip, this time a getaway with just Kirk. We didn’t get to celebrate our anniversary this February because, well, cancer, and the four months he took off of work to help me out were also work. We’ve both been through the ringer this year, and it’s time to relax and celebrate a little bit.

Oh yeah, the celebrating. I do feel like I’ve been celebrating since my last appointment where I got the good news that my cancer is retreating. I even had a small piece of cake this past week…I’ve been avoiding sugar like the plague for most of the year as it’s a wonderful food for those mutanous cancer cells to feast on, but I just wanted a little taste. I do want to rein things in after vacation (with an exception for my birthday party of course!) and trend back towards more of a vegan than vegetarian diet again and more towards whole foods than easy to grab snacks, but I’m also not beating myself up for the little treats I’ve had and will have for the next few weeks. I’m still in celebration mode!

So I’ll check in again in June. I have a whole slew of doctors appointments coming up then: palliative care, old oncologist, new oncologist, naturopath oncologist, radiation oncologist, lab work, MRI, spine surgeon, acupuncture, physical therapy, and a gynocological appointment (I’m STILL going through perimenopause through all this…hello hot flashes! They have been constant the past few months). 

Before I sign off today, I have a question for you. Some thoughts about trails have been percolating in my mind…things I want to look for and focus on in the near future….and maybe some of you can help. Does the US have any hut-to-hut or camino-type hikes? I ordered a hut-to-hut book for the States, but half the options are ski traverses, and most of the others are still carry-your-own-gear type of trips. If I can’t carry a pack for a while, where are my luggage transfer services? And if I can’t find these types of hikes, I should probably get busy putting some together. I bet some of the pieces are there, and it just might take a motivated hiker to put them together. 🙂

Cancer Update April 24

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10 years ago this month I started my thru-hike of the CDT. In other words, a lifetime ago.

I have some scans next week, the first scans since early February, right when my chemo started. 

To say I’m nervous would be downplaying the swing of emotions I’ve been experiencing. 

I go from: “I feel so much better, I bet this is all under control…the 27 brain tumors, the tumors on my ribs and neck and spine, oh yeah, and the one in my lung, they are all under control and I can go into maintenance mode starting next week without any further chemo or radiation. Wooo! I’m excited to find out!”

To: “My ribs still feel sore and so do my neck and shoulders, what if there are new tumors on my shoulders and the ones on my ribs grew. Oh, I’m going to be in chemo forever, I’m scared!”

There are so many things I’ve been waiting to plan until I get these scans—the next few months at the very least. Will I get to visit my parents and go on a vacation with Kirk? Will I have some time to breathe and get my energy back? Will my body recover enough for me to start doing some longer day hikes? Will I be able to spend big chunks of time outside camping and adventuring? 

Will I get to raft the John Day River?

I can’t do any of things things until I get these scans done and meet with my oncologist next week. 😬

Ahhhhhh!

But the good news? I didn’t get sick in Wisconsin…at least yet. The trails conference had about 800 people there from all parts of the country and internationally….and we didn’t even have our federal agency partners there (too much chaos…people have jobs, they don’t. They have a budget, but not for travel. Ooops they lost their jobs again. All of this is crippling the very people we need to take care of our public lands. 😭)

I wore a mask most of the time, but it is still wonderful that I came home without a sore throat or a cold. My immune system must still be putting up a good fight!

Melissa and I in Madison…I went to high school and college with Melissa, some great friends came up to visit me after the conference. And thanks Anne for the photo! There’s that almost normal feeling again!

Maintenance mode of cancer seems like a swan song to me. To go months between scans, months of living a life. But that is when I will need to be most diligent…to eat clean, to exercise, to be postive, to plan for the future. That is when I need to keep the cancer at bay…yet I know it’s not a reflection of my goodness, my ability to do the right thing to prevent the cancer from growing…but it does feel that way. I’m good if my cancer doesn’t grow. I’m bad if it does. It doesn’t work that way, does it?

Have you been following Suleika Jaouad? Ever since I read Between Two Kingdoms, I’ve been keeping tabs on her. She has a new book out and a big huge book tour, but her cancer came back right as she was getting ready for one of the most exciting times. It can happen to all of us at any time. It’s sobering and scary. BUT, check out her new book: The Book of Alchemy…my copy should be getting here any day.

The yard is exploding in flowers…and weeds. I’ve been wanting to try to weed, but getting on my knees and digging in the dirt seems like a challenging prospect. I talked to my PT about it yesterday, and she suggested small spurts of work… bite-sized chunks of yard work and gave me a few poses to try out to prevent immediate fatigue, and I’m still nervous about it. I am also interested in trying a gentle aerobics session in the pool at the senior center, but she also cautioned me that those seniors can be deceptively strong…and to try not to keep up with them. It’s just so crazy to me. A year ago I was so strong and fit…and now I need to be careful of my energy when weeding. It’s just not fair.

Kirk and I just finished watching the new TV show Dark Matter (I love Jennifer Connelly BTW, ever since I would binge watch Labyrinth as a kid, she has been one of my favorites…David Bowie too! I know all the lyrics to the songs in that movie. David Bowie…swooon) The premise is all about multiple universes…an infinite number of universes and for every decisions or inflection point in our lives, there is a spinnoff of another life lived by another version of you with different outcomes. (It’s like another TV show I liked, Fringe). And I think, there is another Renee out there who doesn’t have cancer. There is a Renee whose cancer is more advanced, who already didn’t make it, who found it early, who doesn’t even like to hike…It’s infinite and mind-bending to think about. But I can’t go there, I know I shouldn’t go there, to think about me in a different context…I mean, what does it help the reality of now? To think what if we had found it early, and I recovered without it haunting me the rest of my life? To think what if I never got it in the first place, and I was planning a thru-hike of the Theodore Solomons Trail this summer? Nope…not going there.

Instead, I think about what I might do if my scans next week go well. The trips I’ll take, the relief I’ll feel.

And I think about weeding.

Cancer Update April 9

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My birthday last year…more explanation below…

I’ve had really good runs of sleep lately, and then there will be a night like tonight where I can’t get beyond the first few hours of good sleep (I can almost always fall asleep with ease, thankfully!) So here I am, before midnight! Gasp. And writing. I will most likely be up for a few hours and then will go back to bed, but I aim to enjoy these few hours, and what better way to honor the deep night than to write?

I had a successful chemo session yesterday! I was joking with my neighbor Jan across the street…we saw her and her husband Greg on their bikes just as we were getting home from my infusion.…joking that we celebrate being healthy enough to get poison injected into our veins. Totally ironic. Jan had her own brush with cancer a few years ago and is now living life to its fullest. Riding bikes to go get a burger for Greg’s birthday…they are both about 80! They go skiing, Greg makes rock art, Jan bikes to yoga, and they are both very civically involved. What good role models. 🙂 I’m so lucky to have so many people in my life who are busy living. Who spend every day (or almost every day) doing exactly what they want with the people they love. And yes, that involves those still working, too. I have always put emphasis on doing work that I believe in and that energizes me, and the end result of living in that manner is that I tend to surround myself with others living that way too. It’s a great gift. 

In fact, when I couldn’t sleep before getting up, I was listening to an On Being podcast on just that subject. Give it a listen: 

And I love that both the guests, Atul Gawande and Krista Tippit, gave a nod to Annie Dillard’s quote: “How you live your days is how you live your life.” You have probably read it before in my blog journals. It’s a question I have long kept at the center of my decision-making. I like to live as if each day would be full enough, joyful enough, rich enough to be my last. Before, it was never about death; it was about living a fun, fulfilling, inspired, adventurous life. I’ve had conversations with friends before when they were deliberating a heavy decision…I often say, “There are no bad decisions; some just may be more work than others.” I believe that. And also there is so much time! I look back at the 20-year-old me, and I’m so grateful that I threw my hat in with the peace corps. So many people put too much weight into the job decision right out of college; it seemed so critical that it will set the tone for the rest of your life, but in truth, there is so much time. I’ve had 20 different careers, and sure, now I can look back and draw the connective thread between them all (well, most of them, I still get hung up on the metal roofing gig!) and see how they all make sense. But at the time, they sure didn’t. It was following my curiosity and seeking to learn something from each experience. By taking on the position of student in my jobs, I was usually able to gain a skill that could be used later on, and then it often was easier to know when it was time to move on. Objective complete, next! What else is out there?

Of course, we are living in different times. Generations ago, people kept their jobs for their entire adult lives. Granted, they also had pensions and a social system and work culture that invested in them…we don’t have that now, and it’s much more accepted to hold many, many jobs….it’s now important to tell a good story about how and why you moved around so much.

Man, I’m still getting hung up on the whole short life span with a stage 4 diagnosis. I’m also still determined not to let that slow me down in the “maintenance phase” of life after chemo. I also realize that when I wrap up this first round, it might be the first of several chemo cycles, but hopefully, there will be long phases of maintenance in between where I can live a semi-normal life. It’s hard to fully conceptualize, though. I started seeing a new PT who specializes in oncology patients, and she was encouraging me to think of my daily energy battery as having a finite life. Even walking slower will help conserve the battery, so walk slower, strive to only have one doctor’s appointment a day….to be very conservative with my energy so I’m not totally toast at the end of the day. And I have been. I tend to live my best life before noon or early afternoon and then retire to the bedroom to nap and rest the remainder of the day. Can I get better about spreading my energy out? Will I have more energy when the chemo is done? I’m not working, but I am still chair of the Oregon Trails Coalition board (although I’m about to bring on a co-chair to help share the duties, which will be a huge help!), and I’m also volunteering to help support Oregon Desert Trail hikers. I have tended to ODT hikers for nine years, and I can’t stop now! At least while I have energy. Finiate energy. And then the books, reading the books you all have sent me. I try to make time for that! I just started Mike Beaty’s suggestion, Ursula K. Le Guin’s Earthsea series (thanks Mike, loving it so far!) and an advanced copy of a book that Snorkle sent about the queerness of nature (fasinating!) and have another on deck, Thirty Below, a story of the first all-women’s ascent of Denali that my friend Lori, or Shake N Bake sent me, AND I just got a volume of poetry in the mail yesterday by an unnamed gifter, Marge Piercy’s Made in Detroit. Thanks stranger!

So many books to read, so little time.

How do I want to spend my days? Reading! Walking, visiting with friends and family, spending time with Kirk, netflix and chill (with popcorn), and travel…and fortunately I do have travel on deck. I’m feeling pretty rich right now. Rich in life (not to be mistaken with money…)

I love the excitement of a trip coming up. I keep adding things to my packing list, things I want to bring to Madison, things that I want to do in Madison.

I’ll be seeing one of my childhood best friends, Jasmine. Our houses were within biking distance from each other in the countryside of Almond. I would bike her home, then she would bike me home, and I would bike her home and vice versa. We could spend whole afternoons doing that, making fun of our brothers who liked to bike in circles at the intersections of our roads “turkey vultures” we would cry out as we peddled past. When we weren’t biking back and forth we might be climbing trees, or making forts in the cornfield, exploring the woods behind her house or mine, or making up ice skating routines in the yard ice rink her dad would make with the garden hose when it was cold enough to keep for a while. AND Jasmine hiked the PCT a few years ago! Kirk and I drove out to meet her and her partner at an Oregon trailhead near Mt. Hood. I brought plenty of food and beer, of course, and we marveled that two of us from Almond, Wisconsin, were PCT hikers. Love it.

Then I’m going to see all the friends that are actually attending the conference, like Allgood (my birthday brother…he is a June ‘77 baby just like me, although I’m a few days older). He just got a job with the hiking app Far Out and will be attending on their behalf. Then there is Steph and Chelsea and Jodi, and probably plenty more from the Oregon Trails Coalition, and then there will be all the other folks I met at trail conferences over the past few years. Exciting!

Then I’ll cap off the week with a visit from some high school friends who are driving up from Central Illinois. We all graduated from Dunlap High in ‘95, and as luck would have it, they just came out to Bend last summer for my birthday! Kelly, Melissa, Celena and Hanna got to see Bend for the first time, and we’ll get to hang out again…quite a moving thing because we all lost Missy less than two years ago to lung cancer. We’ll miss Carrie, our other high school bud who is back in Bend (she moved here about 8 years ago), but I’m spoiled; I get to see Carrie all the time 🙂

Hanna, Carrie, Me, Melissa, Kelly & Hanna’s daughter Emma, Celena must have been taking the photo. We drove to Pilot Butte for sunset after a wonderful birthday dinner.

To explain the top photo a bit….we drove up to Elk Lake to have lunch that day when we pulled over for this photo opp with Mt. Bachelor. NEMO sent me a she-ra crown for my birthday, and Kirk gave me some loppers, so I had to carry both around and pose as much as possible 🙂

So again, how do I want to live my days? With friends! Doing fun things! 

The therapist I’ve been seeing even suggested to ask myself what this cancer year (years?) has allowed me to do, and if I’m honest, I’ve been able to refine my life down to the very essentials: spending time with people I love: Kirk, friends & family; reading; writing; and travel. And maybe it’s ok to be grateful? Oh man, that’s a hard one. To be grateful for the cancer while also fighting the cancer. It’s a complicated dynamic we have going on for sure.

Cancer Update April 4 & Say No to McDermitt Mine

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Photo from my 2022 trip to the McDermitt Caldera where we monitored the area. Photo by Gary Callicott.

So close, yet so far.

I went in for chemo yesterday, but my platelet count was too low, so they sent me home in hopes that my numbers will be better next week and I can get the infusion.

Sigh. 

I’ve just been exhausted this week. As in, I don’t have much energy to move and could sleep all day. My acupuncturist said it was probably low protein (BTW I have an amazing oncology acupuncturist in town, Kym Garrett; if you have cancer and want acupuncture, she is the one. I always come away with something extra, and she goes above and beyond connecting me with the right resources at the right time, she said my recent hair loss could also be explained by low protein.) Nooooooo, I’m not (or didn’t think) I was that vain, but when I put my hair in a ponytail recently and realized it was much thinner than I remember, it was a gut punch. 😮

I immediately googled medication side effects, and sure it could be a side effect of the chemo, of the tegresso, of low protein, and maybe I’ve had it going on for months…When I was in the c-collar, I had my hair up in a bun all the time so didn’t take notice, but wow. Now I’m starting to feel like I have cancer.

I could barely make it on my short walk loop yesterday, and felt like I was dragging my feet the whole way.

Ok. protein. I’ve started asking around more about diet, too. The facebook group for my mutation says there is no proven cancer diet that helps all types of cancer and all people, and you really have to find what your body responds the best to. The truth is I’m struggling to get enough protein by just eating vegan. Well, this week I haven’t wanted to eat much at all, which is another side effect of EVERYTHING. So I’m starting to experiment more with other proteins: eggs, yogurt, protein shakes, and some fish. I need to find what works for my body. I want my energy back! (And some hair, please).

I’m also soooooo ready for a change of scenery. I love how cozy we’ve made our house, but get me out of here! We are spending the weekend at a friend’s cabin and I couldn’t be more excited. Excited to get out of the house, excited to spend time by the river they live near, excited to have something different to look forward to. The days are bleeding into one another and I am in a haze of same-ness. And I still have the Wisconsin trip coming up. 🤞

Soon I’ll be on maintenance mode for the cancer (at least that’s what Dr. Schmidt says) and it couldn’t come at a better time because the oncology floor of the medical center I’m going to is closing in a few months. It’s pretty terrible and apparently a shareholder decision after all the medicare/medicaid hoopla going on in the federal government. Have any of the changes affected you? It’s affecting me, and it sucks. It will be a blow for the community because with less services, more people will not get the care they need on a timely basis, I shudder to think about how far my cancer could have gotten if Dr. Schmidt and Dr. Blechman hadn’t started my treatments immediately when I had my first appointment in January. If I had to wait another few weeks or month to see an oncologist, which is the way it was going. I shudder daily when I look at all that is eroding around me and the fear among friends who work for the federal government. 

Oh, and if you care about one of the last intact habitats for the sagebrush steppe in the West, and the health of one of the biggest priority habitats for the greater sage-grouse in Oregon, please take some time and comment: 

BLM rushes review of Oregon lithium project following Trump’s executive order – OPB

This is what I used to do, take groups of environmentally conscious volunteers out into the high desert to learn about important issues and do stewardship activities that support these landscapes. This was in the McDermitt Caldera in 2022 – I celebrated my birthday on this trip! There was nowhere I’d rather be. See more photos here. Photo by Gary Callicott.

A lot of us rose our voices in protest when this devastating project was given only a 5 day comment period (normal comment periods are 30 days…this may have been breaking the law to only give us 5 days), so I was thrilled to see our outcries resulted in the comment period being extended to April 25 at 4:30pm (pacific time). 

Find more information here and comment: EplanningUi

The red line is my crude attempt at showing where the Oregon Desert Trail is in relation to the potential mining project.

And remember this photo? (I thought I posted it to my blog, but it was just my Facebook account)

This is the photo of a local rancher who does not want the mining to happen. He will lose his livelihood if the mine goes through, and this is the website of the People of Red Mountain, a committee of traditional knowledge keepers and descendants of the Fort McDermitt Paiute, Shoshone and Bannock Tribes who are working in coalition with allies to protect their ancestral homelands. When I led the group of volunteers to monitor this area a few years ago, the People of Red Mountain had countless stories for us about how sacred these lands were and are. I saw first hand what would be lost, the sagegrouse and Lahontan cutthroat trout that will be decimated, the Lahontan cutthroat could likely go extinct….and for an Austrailian company, No. Nope. Please speak out.

I’ll leave you with a few more tidbits:

The Balance of Life at McDermitt Creek

Group shot with Daranda and Myron from the Fort McDermitt Paiute and Shoshone Tribe - Gary Calicott

March 23 Cancer Update

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Get ready for some neck.

I saw the neck surgeon this week to evaluate my collapsing C7 and look at my C4 three months post surgery, and I got the all clear! The doc said the C7 doesn’t have to be addressed, and that I can live with it (we didn’t talk about backpacking, I have a feeling a full-weighted backpack might paint a different picture). I then took some x rays which showed that my C4 is appropriately healed. So that means I can start taking my c-collar off. Get ready for some neck!

So the last few days I’ve been spending more time with it off, getting used to the weight of my head again. I’m practicing turning my head and nodding again, all things I haven’t been able to do for three months. A bulk of the work will come to play with my PT. I’m transitioning away from the in-home PT to an outpatient situation, and it’s like I’m graduating or something…I’m slowly being positioned to live without daily doctors appointments and check-ins. We are also looking at decreasing my meds…I’m already off the steroids and we are looking at the pain meds next. Am I in pain anymore? It’s hard to say. Are the meds masking pain or do I even have pain any more? I have discomfort for sure, but pain? 

All this is coming as I look at making my first trip to the trails summit in Wisconsin in three weeks. Can I be ready to walk around without my collar most of the day in three weeks? Can I have a glass of wine at a happy hour in three weeks? Can I sleep without an adjustable bed in three weeks? 

The rash is still rashing, but it’s not getting worse, I guess it’s clearing up, maybe a little?

I still feel the cancer in my spine and in my ribs. Is the tagresso doing it’s job? Maybe a little?

I’ve been sleeping a lot. Like half the day away, but again, I’m not fighting it. But I feel like I’m in a bit of a daze all the time. Sleeping so much puts a dream-like quality to everything. If I’m not myself right now it’s because I’m a dazed and dreamy version of myself. 

I’m struggling with the habit of productivity. I went on a walk with a friend yesterday and we talked a bit about it. She wondered if it was a mid-western quality…this need to always be moving some ball forward, even when dealing with stage 4 cancer. What am I trying to be productive about? Well, writing here for one, diving into my past for two, and putting out there that I want to write a book (Really! Sometimes that just seems insane), and then writing thank-you cards for everything. That it’s ok to let some or all of it go.  I know that it is, but the blog serves as a processing time as well, and it is keeping you all in my life, which I really need these days. 

I got a card from a stranger, a hiker that has been reading my blog for years but I’ve never met, and I needed to read that card that day. It made such a difference in my morale and mood. I need all of you in my life, so I want to be productive enough to update the blog to keep you all informed and close. I need all of you. 

I got another card recently from a volunteer that came on one of my trail work trips last year. I only met her that one time, and she wrote the most beautiful card with gifts of song and book recommendations. I love that, that kind of thing fuels my day, and I’m thrilled to add to my reading list too 🙂

So all of this to say, I don’t know where my need to be productive comes from, but I don’t want to give up the need to write, and sure maybe I’ll stitch some of this together into something that could be called a book, but I do want to give up the idea that I’m going to come out the other side of this looking for a publisher. I want to give myself time to just be. And right now that looks like a lot of sleeping. Not as much reading as I’d like (reading puts me to sleep right now), but I’m just going to let it be and not fight against it. 

You will probably have to remind me of that from time to time! 

March 20 Cancer Update

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I was doing this last March 20…section hiking the Idaho Centennial Trail.

It’s the first day of Spring. Lets do this.

I’m ready for some change.

In all honesty, I’ve seen a lot of change this week. For one, I’ve been sleeping! Something flipped last weekend and suddenly I was sleeping most of the night and sleeping throughout the day. I couldn’t sleep enough. I was in a dis-combubulated haze of sleep for a few days there, and didn’t fight it. I don’t know if it was transitioning from Trazodone to Magnesium Glycinate and a sleep THC/CBD tincture, or maybe it was decreasing the steroid I was taking, or maybe it was my body saying, “enough,” but it was time.

I’ve also been seeing changes in the form of some of those side-effects from my new mutation drug, Tagrisso. There was a line about adult acne in the list of side effects, and a few days ago my legs erupted in a red rash of something. It’s not really itchy, but it looks bad. Real bad. I had a consult with the docs this week and they prescribed a steroid cream for it, and my acupuncturist suggested drinking celery juice for it’s anti-inflammatory and cooling qualities (Note: for those of you suffering from high blood pressure, try some celery juice!) I fully believe that food is medicine, and hope to be learning more and incorporating more food medicines through this journey of mine.

What else has been going on? Oh it’s winter again, or it was for a while this weekend. Snow and ice have covered the ground and curtailed some of my daily walks…I think that has added to my malaise.

And I’ve lost my taste for coffee…I’ve gone several days without it, which is very odd. Oh and my stomach is a mess. I can’t seem to digest anything.

So in general I’ve been living in a foggy state of existence this week. I’m not sure if I’m snapping out of it? I woke up at 1am this morning and got up, so we’ll see. 

You all continue to send me exciting books. I’m eager to read some of the new arrivals: Between Two Kingdoms, Wind, Sand and Stars, and My Journey to Lhasa. One that I’ve been working on for a while now and am almost done with is The Mission Walker. I’m really in the mood for good adventure books.

As for shows, Kirk and I just finished season 1 of Severance, and just started season 2. Go Mark and the Innies!

In general all the changes seem to be not so productive. I haven’t seen a big difference in my pain levels, in the feeling in my spine and ribs. I hope the new med is working, but I guess we won’t know for a while. At least I don’t feel like the cancer has changed course since I started Tagrisso, but who knows.

I don’t think I’m going to deep dive into past stories today. Not feeling it. 

Instead I’ll open one of those books and read until my eyes can’t stay open and then go to bed again. 

Peace out.

Cancer Update March 6 (Progress!!!!)

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Napping in front of Mt. Jefferson.

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. 

I’m sooo ready. 

Lets do this thing.