Tag Archives: chemotherapy

This Is What The Maintenance Phase of Stage 4 Cancer Looks Like

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FYI – It’s ALOT of work.

View from a recent walk along the river trail

I’ve been home from the Camino for about three weeks now, longer than I was away on the walk, but time did that sneaky thing again, and months of life seemed to happen in 18 days. Time distorts when you step away from your normal routine. It extends your life. And I find that returning from travel helps me find comfort in my daily habits and favorite things – like the hot mug of green tea I bring into the office for my morning writing sesh while snuggling into the blanket that has a little foot pocket to warm my feet. Going away helps reorder life when you get home.

Just what have I been up to these past three weeks, other than rearranging everything to live the life of a writer? Well, doctors’ appointments, of course. It takes a lot of work to monitor and heal from this incurable disease. Note: many of the people I’ve known who have passed from cancer did so within a year of their initial diagnosis. I’m almost at month 10…and continue to feel I will be in the minority.

So, in the spirit of oversharing…here are all the details. Since getting home, I’ve had:

  1. An appointment to replace my metal nose ring with a glass one, so it wouldn’t interfere with my brain MRI the next day
    • Metal rings in noses are an issue for MRI machines. Did you hear about the guy who died when his large metal necklace dragged him into an MRI room? Kirk can’t have an MRI because he’s been a metal worker for so long that a small piece might be embedded in his body, and could get ripped out when he approaches the big magnet. Yikes! Anyway, I ordered a nose ring that will be easier to remove for future scans because the one I have now is a full circle of metal with a ball on one end. To remove it, I need to twist it open enough to pop one end of the post from the ball and then pull the ring apart to make an opening big enough to twist it through my nostril. That hurts. And I couldn’t get the loop closed when putting it back in after the MRI because my fingernails are now breaking, and even a slight bump will cause fractures and splits. I understand this is because they have finally grown out to reveal the effect chemo left on my body nine months ago. Also, Tegresso, my daily cancer med, can cause weak nails as one of the side effects. 
  2. A brain MRI
    • A motorized tray slid me into a circle of magnets the day after I got home. Usually, I see test results the same day in My Chart, and when I get them, I am often tempted to type words or phrases that I don’t understand into a search engine (as you already know from this section: Interpreting a My-Chart test result in the middle of the night with no doctor supervision). But when I finally did get the results, there wasn’t anything to worry about because the tumors are still shrinking. THE TUMORS ARE STILL SHRINKING!!!
  3. Labs
    • The day before every appointment with my oncologist, Dr. Tiffany, I have labs drawn. My neutrophils absolute and hemoglobin are monitored, and we have a sharp eye on my platelet levels. Another of Tegresso’s side effects is low white blood cell and platelet counts. That means I’m more susceptible to infections. This time, most of my numbers were similar to previous labs, but my liver enzymes were up, which I attribute to all the wine I drank in Spain. No one is worried, though. I brought up the results with several of my doctors, and all thought the health benefits of drinking wine in Spain while I walked 170 miles outweighed the negatives; plus the numbers are still on the low side of high. So these results have been placed in the “don’t worry” column of “bad things that might happen.”
  4. A trip to the gynecologist
    • Since my body got nuked with chemo and radiation at the start of the year, I haven’t had a period, and was quite perimenopausal before (think hot flashes and brain fog). I had my hormone levels tested a few months back, and found numbers hovering around non-existent. My doc prescribed progesterone and estrogen (both in a patch and cream form), and the change was dramatic. No more hot flashes, a clearer brain, softer skin, and as I described it one day on the Camino, it felt like my body was waking up, that I was coming alive again. 
  5. My first Zometa infusion
    • Since I had so many tumors along my vertebrae from neck to pelvis and femur, I am at risk for fractures. The swiss cheese effect of the hungry cancer put me in a wheelchair until radiation could harden some of the bones that would keep me walking, particularly in my pelvis. But good news: the bone is slowly growing back now. The bad news: combined with the osteoporosis risk of menopause, I still have a fracture risk. Fortunately, the hormones that work for hot flashes also work to strengthen bones. 
    • Now Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent fractures. Since my chemo port was removed in August, I’ll get my infusion the old-fashioned way – needles and tubes in my arm. Every three months I will head up to the transfusion room at St. Charles Hospital to get a vein poked while looking at the Cascade Mountains. Back in the day when I worked at the art magazine in town, I made one of the first tours of this facility when it opened…it was state-of-the-art, and hosted works of many local artists. I never imagined I’d be back a decade later to sit in one of those chairs.
    • Dental clearance prior to taking Zometa is needed as one of the nasty side effects could be bone loss in the jaw, and those of us who have been treated with chemotherapy, radiation, or steroids might be more likely to develop it. I got the dental clearance a few months ago, and I’ll be flossing regularly, thank you very much!
  6. A massage
    • My neck continues to struggle holding my head in the right position. I especially feel it on walks and at the end of the day. I expect my muscles tightened when I got home and sat down more than I moved, so when the massage therapist found a lot of knots under my shoulder blades, I was grateful for the release. 
  7. An appointment with my naturopathic oncologist
    • During my check-in with Dr. Neubauer, we discussed ramping up the dosage in my mistletoe injections…the goal is to have a 1” rash at the injection site most of the time. And if you don’t remember from one of my previous posts, mistletoe has a host of beneficial effects, like helping the immune system recognize and destroy the cancer by activating tumor-killing cells such as macrophages, dendritic cells and natural killer cells.
    • One of Dr. Newbaurer’s suggestions this time was to increase to my calcium citrate each day. More calcium will offset a loss when the Zometa draws the mineral from my blood to deposit it in my bones. 
    • And now that my body is in a stable state, she wanted me to get another set of labs to measure the levels of copper and zinc in my blood. An imbalance can cause tumor growth. 
  8. More labs to measure copper and zinc
    • Results pending.
  9. A visit to my palliative care doctor
    • Dr. Blechman is wonderful. This woman was the first doctor I could get an appointment with after returning from Louisiana and my emergency surgery after diagnosis. She immediately saw the urgency in getting me in to see an oncologist, so much so that she walked down the hall, had a few words, and I was talking with Dr. Schmit a short while later…chemo started the next day. Dr. Blechman has my back; they both did. One of the first things she shared with me when we met last week was that she, too, went on a Camino-style hike in Italy this summer. Complete with hotels and cafes and luggage transport… and she thought of me and my Camino. I expressed my gratitude to her, and we shared a few tears of joy. My pain is very manageable right now, and I’m at such a steady place that we agreed our appointments from now on would be TBD. Magic.
  10. A trip to see my oncologist
    • I had a smooth transition from Dr. Schmidt’s care to Dr. Tiffany this summer when the cancer wing at Summit Health closed down, and Dr. Tiffany has been nothing but supportive of my recent activities. At the appointment, we reviewed my labs and brain MRI, talked about Zometa, and covered a few various other small issues I’ve been having. All signs point to stability, so I am moving from monthly labs to an every three month schedule along with my scans. Winning!
  11. A physical therapy appointment
    • Melissa Carlton is supportive and gentle. She works on my shoulders, back, and legs – stretching, assessing, and determining how to best address my current aches and pains. Right now, that looks like a sore and tight lower back. Melissa reminded me that I had weeks of daily radiation pointed at that part of my body, so the stiffening is not surprising, and wearing a lumbar pack for two and a half weeks probably helped set it off. The discomfort is bearable, but it also feels like a spring that’s loaded and ready to pop, so the strategy is to strengthen my core, use topical creams like magnesium at night to soothe it, and add in hot epsom salt baths and heating pads during the day. Melissa also wants me to try wearing a light backpack to see if a little weight on my shoulders might help both my posture and my lower back. Lets do it!
  12. An acupuncture appointment
    • The lower back work continued with my acupuncturist, Kym Garrett. Again, a knowledgeable, compassionate, and supportive practitioner that I’ve been seeing since early this year. This time, Kym used her needles to help ease my lower back and shoulder tightness and suggested other methods of anti-inflammation. I know I need to eat less inflammatory foods… I’ve slowly slipped sugar and refined flours back into my diet lately (mostly in the form of pastries and breads), so I want to cut back. I’m still taking so many pills that I don’t want to add another unless absolutely necessary (see below). Ahhh, I still remember the days when I didn’t take any. Most of my life, I’ve never needed to take any medication, so this new reality is still an adjustment. My daily pillbox now carries 17 gelcaps and tablets that I take spread out between morning, noon, and night. Yikes.
  13. A neurosurgery appointment
    • I’ve been seeing Dr. Tien for follow-ups on my neck surgery, and because it can take such a long time to heal (and I still have a collapsed vertebrae) he wants to continue to see me every three months or so. Usually, I have an x-ray done so he can see how the screws and mesh are doing in my neck, but since I had the brain MRI recently, he was able to reference that and didn’t have any concerns, in fact he was quite impressed with how my body is healing. Good job neck 🙌

So what medications am I taking in this maintenance phase? Things keep changing as my body is changing, so this list of drugs is a snapshot in time. 

  • I’m taking 17 pills a day, and then there are also shots, powders, and creams.
    • Mistletoe
      • According to the National Cancer Institute, mistletoe is one of the most widely studied complementary and alternative medicine therapies for cancer. In certain European countries, extracts made from mistletoe are among the most prescribed therapies for cancer patients. (This is a Dr. Newbauer-prescribed medication)
      • I give myself an injection of mistletoe on Mondays, Wednesdays, and Fridays, and I’ve been slowly ratcheting up the dose so I get an immune system reaction of a 1” rash at the injection site. So far, I have no other side effects other than the lack of active tumors. 
    • Estrogen
      • One of my hormone vectors is an estradiol patch that I replace twice a week. I place these small, clear disks of sticky below the belt, alternating between my left side and the right.
      • The other estrogen product is a cream that I use nightly on my lady parts.
    • Magnesium
      • I apply a magnesium cream on my lower back every other evening before bed to help it relax during the night.
    • Astragulus
      • I take powdered astragulus mixed in water every day. This tonic helps my bone marrow, blood counts, kidney support, and has shown increased survival in clinical trials. (A Dr. Neubauer medication)
    • Mushroom powders
      • I put a powdered turkey tail and reishi mushroom mix into my coffee in the mornings (Note: only one cup of coffee most days). Turkey Tail mushrooms are known for their high levels of beta-glucans—compounds studied for their ability to help maintain a healthy immune system, and the benefits of reishi mushrooms are listed as: supports immune health and resilience, supports mood and emotional well-being, promotes restful sleep and relaxation, supports energy, vitality, and healthy aging, helps maintain general wellness and resilience to stress, promotes cardiovascular and circulatory health and helps maintain healthy blood sugar metabolism. Of course, these benefits are from a label, but these mushrooms are Dr. Neubauer-approved. Note: next time she wants me to buy the 5 Defenders brand due to its 100% hot water-extracted process. The hot water method ensures that the powder contains more than 20% beta-glucans, which are known for their immune-supporting properties, and it unlocks the full spectrum of beneficial compounds.
    • Nail polish
      • To help harden my nails from the chemo and cancer med side-effects, I’m now using a clear strengthening polish. 
    • Now for the pills:
      • Keppra
        • Since I had a few seizures earlier this year, I’ve been put on this anti-epileptic drug. I have been thinking of coming off of it, and when I do so, I’ll need to avoid driving for three months because the lack of keppra can also cause seizures (ironic!). But I still have a couple of tumors around my brain – they are shrinking, so I’m not sure if/when I’ll start the tapering process. After meeting with Dr. Tien he said it was too early to stop taking the drug, and I’d need to be referred to a neurologist for further consultation.
      • Calcium citrate
        • As explained before, I increased my calcium intake recently from 600mg to 1200 due to my Zometa infusions. Calcium can help maintain bone density and prevent osteoporosis, and it also plays a role in muscle function, blood vessel contraction, blood clotting, nerve transmission, and hormone secretion.
      • Vitamin D3
        • In experimental studies of cancer cells and of tumors in rodents, vitamin D has been found to have several biological activities that might slow or prevent the development of cancer, including promoting cellular differentiation, decreasing cancer cell growth, stimulating cell death, reducing tumor blood vessel formation, and decreasing tumor progression and metastasis. Vitamin D was also found to suppress a type of immune cell that normally prevents the immune system from responding strongly to cancer (source). 
      • Peak K2
        • I take this with every meal, as it is shown to support the activation of bone-building cells, is involved in calcium distribution to bone, and promotes normal blood clotting and vascular health. (A Dr. Neubauer medication)
      • Tegresso
        • This is my daily cancer med that I’ll take for the rest of my life (or as long as it works). It is used to treat adults with non-small cell lung cancer whose tumors have a certain abnormal epidermal growth factor receptor – that’s my mutation of EGFR19. It is used to help prevent my lung cancer from coming back, especially metastatic cancer…meaning it has spread far and wide across my body. Some people become immune to Tegresso after a few months or a few years, while others have stayed on it for a decade. We’ll see how long it lasts for me. Tagrisso works by targeting the EGFR receptor, specifically the T790M mutation that blocks the signaling of EGFR, which suppresses cell growth and induces programmed cell death in cancer cells with these specific mutations. Tagrisso is considered a targeted treatment and is not chemotherapy, but it works well with chemotherapy, like the rounds of pemetrexed and carboplatin that I had earlier this year.
      • Boswellia
        • Boswellia serrata has been used in traditional medicine for centuries, particularly in Ayurvedic practices. Its active compounds, particularly boswellic acids, are believed to contribute to its therapeutic effects, including anti-inflammatory and anticancer properties. (A Dr. Neubauer medication)
      • Magnesium glycinate
        • Magnesium glycinate is formed by combining elemental magnesium with the amino acid glycine. This form of magnesium is highly bioavailable, meaning the magnesium is easily absorbed through your small intestine. It can promote bone health, help regulate blood sugar, help maintain regular heart rhythms, amplify exercise performance, and reduce pain.
      • Progesterone
        • Without enough progesterone, as often happens in perimenopause, women start experiencing symptoms like irritability, anxiety, poor sleep, and fatigue, so progesterone helps to improve those symptoms, and it supports bone and heart health too. 
      • Meletonin
        • While melatonin is best-known as a sleep aid, it also regulates the immune system and tissue repair and has cancer-related benefits like increasing survival rates, improving the likelihood of responding to chemotherapy, activating the “self-destruct” process in tumor cells, and blocking the ability of cancer cells to grow new blood vessels and to spread to other tissues. (A Dr. Neubauer medication)
      • Senna
        • Because of all of the above, I can have trouble with my bowels. Senna is an herb, scientifically known as Senna alexandrina, commonly used as a laxative to treat constipation and works by stimulating bowel movements. I’ve been taking this since my diagnosis, but Dr. Neubauer warned that prolonged use can cause gi parastalisis, meaning paralysis of the stomach. It’s a functional disorder affecting your stomach nerves and muscles which can lead to making your stomach muscle contractions weaker and slower than they need to be to digest food and pass it on to your intestines. So, I’m starting to wean myself off Senna, and instead take more:
      • MiraLax
        • I have been taking more MiraLAX powder (mixed in water), which increases the amount of water in the intestinal tract to stimulate bowel movements.

It seems that all I’m doing to keep the cancer from regrowing is working, but it’s not just through the doctors’ appointments and medications mentioned above, either. I attribute my growing health to these factors as well:

  • Walks
    • I take walks, almost every day if I can. Living so close to the Deschutes River means I never have to get in the car, and I make a loop on the river trail most days. Sure, I could walk one of the hundreds of trails we have on public land around Central Oregon, but again, that would mean getting in the car. Why do that when I have a wonderful walk along the river right out my front door? Now that snow has started to fall in the mountains, I get occasional glimpses of that lovely skyline from the river trail, too. Of course, sometimes I head out before sunrise to meet the day on its way up. That reminds me: winter is coming, and with that, my hopes to ski this year. I won’t go downhill yet because of my heightened fracture risk, but I can’t wait to cross-country ski and glide through the silent woods in the sparkling snow. 
  • Yoga
    • I’ve been going to yoga again over the past few months; the 6am classes are my favorite. The room is never full that early in the morning, and it is heated to a balmy 90 degrees where the muscles practically melt with our gentle movements. I don’t do every pose…I have to modify many of them for my stiff back and compromised neck, but I have been able to loosen up some of my joints…I had to take almost a year off from my practice since getting sick, and fortunately there is a noticeable improvement in my balance and flexibility just over the few months I’ve been back.
    • I’ve been going to the same studio for 15 years now, and wouldn’t you know it, Pam, my cancer mentor, was my first yoga teacher there. I love my 6am yoga, the teachers, and the familiar faces I see week after week. The best part about Namaspa is that it’s within walking distance from home, so again, I don’t have to get in a car. Are you noticing a theme here? In fact, I didn’t own my first car until I moved to Bend at age 32. I love a walkable/bikeable community.
  • Daily stretching
    • My at-home physical therapy exercises have been a light lift so far. Much of what I was doing was aimed at opening up my shoulders, helping my neck find the right alignment, and working my upper body, like bicep curls with one-pound weights. Now I have a series focused on my lower back, and I’m motivated to do them every day with the promise of more strength and less pain. I know I’ll need both to ski this winter, so I do my exercises.
  • Food
    • Many of the changes I’ve made in my life this year revolve around food. I’ve always eaten fairly healthy, but now I pay much more attention to my nutrition with the help of Dr. Neubauer’s suggestions. I’m not eating vegan or vegetarian right now, but I still limit my dairy intake and avoid red and processed meats. Every day (or every other day) I try to have some:
      • Ground flax
      • Chia
      • Hemp seeds
      • Fruit (berries especially)
      • Avocado
      • Nutritional yeast
      • Green tea
      • Ginger
      • Broccoli
      • Broccoli sprouts
      • Nuts
      • And protein with every meal
        • I could go into the specific health benefits of all the above, but this blog post is already becoming novel-length, so I’ll let you do your own research there.
  • Sleep
    • Since finishing the steroids I was on at the beginning of year I haven’t had any more problems with sleeping through the night. What a relief! This body needs all of those hours to work it’s internal healing magic. I’m sure the sleep is helped by the 10mg of melatonin I’m taking every night too.
  • Community
    • Taking part in community activities, surrounding myself with friends, and laughing have all been extremely important to me this year. A few things that have brought joy lately include:
      • Attending BendFilm
        • One of my dear friends, Adryon, is on the board of the BendFilm festival which takes place in October each year. Adryon and her wife Brooke always attend the festival, and this year and I got the double pleasure of watching a few films and catching up with them this past weekend. Even better? Adryon’s brother Aaron is a filmmaker, and has promised to help me should I want to think about writing screenplays at some point. Aaron and his wife Katrina had a little girl, Jules, about a year ago and I was able to catch up with both of them at BendFilm. 
      • Volunteering with Central Oregon Land Watch
        • Many of the people I used to work with at the Oregon Natural Desert Association now work at Central Oregon Land Watch, including Ben Gordon, who hired me for the Oregon Desert Trail job ten years ago (Ben and his wife Serena hiked the PCT in 2006 too, but we never met on the trail!). My friend Lorainne, who is their Development Director, asked if I wanted to volunteer at an aid station halfway on one of COLW’s fun runs this week, so I joined her in the gorgeous fall sunshine to distribute water, bananas, and banana bread to the runners. Friends, the conservation community, and sunshine? Sign me up! If you are local, check out the wonderful lineup of events they have coming up this fall. The Livable Future Forum will be hosting Chuck Sams, the first Indigenous National Park Service Director and Cayuse and Walla Walla tribal citizen next month. In November I’ll be attending a talk by longtime High Country News contributing editor Michelle Nijhuis who will share insights into essential environmental reading. I’ll miss the Chuck Sams talk, but he is our keynote speaker at next month’s Oregon Outdoor Recreation Summit in Pendleton (on his homelands).
      • A sauna sesh
        • One of my besties, Carrie, has access to a sauna and I’m going to partake with her this week. There are a long list of health benefits to the sauna, and I’m excited to overheat and catch up with her. Carrie and I have weekly hang-outs, and her friendship has been an amazing gift to me this year. Friends are essential to the healing process.
      • More cards and emails from you
        • Thank you!!! The love keeps coming and I can’t say thank you enough 💖💖
      • Mutual aid
        • I don’t have much, but when people who have less and are suffering from environmental injustices and their entire communities are lost to floods, like what is happening in Alaska right now, I try to donate something. You can help too by contributing to the Alaska Community Foundation.
      • Taking action on behalf of my community, the environment, and the country.
        • Taking action is a form of healing. Doing anything beyond paying attention to what is right in front of my face has been leading to spiraling despair lately, especially as the dystopian nightmare is getting closer and closer to home. So, I’m getting active. I got out my paints in preparation to participate in democracy this weekend. I hope to see some of you out there! 

Again, I’m so grateful to be healthy(ish) 10 months out from diagnosis, but the reality is, two more of my classmates from the Dunlap High School class of 1995 died this year of cancer. My best bud Missy, died 2 years ago from the same exact cancer that I have, so far I know two of us from that class that have survived…but there are so many people I don’t know about. Most people aren’t public about their health problems. Does anyone know of a study going on in Central Illinois about the massive number of cancer cases happening in young people? Other than those already listed, Missy lost her first husband to cancer, another friend’s husband died of cancer, another friend’s sister and brother-in-law died of cancer… all were younger than I am now. Was it the spraying of alfalfa and corn fields? Was it radon in the ground? Was it air pollution? Anyone? I know, I know, we’ll never know for sure because the poison is coming from all around us all the time. It’s everywere. Even newborn babies have microplastics in their bodies. 

A woman I’ve been following for some time now just announced her recent cancer diagnosis. Jen Gurecki has stage 2 breast cancer and has been a hard charger in the outdoor industry for years. I’ve purchased several things from the ski and snowboard company she started, Coalition Snow, and even bought a basket from Zawadisha, a Kenyan-based social enterprise she started whose mission is to provide small loans to rural Kenyan women to help finance their livelihoods. She is sharing her cancer journey over on her blog Redefining Radical. You can also donate to her Go Fund Me here.

Thank you for reading to the end, you rock!

Since the commenting has been so buggy lately on this website and an upgrade would be very expensive, I’ve decided to share these posts on my new Substack where commenting will be much easier. So head over there if you want to leave me a message. Note: My substack is free, I am not accepting payments at this time, so feel free to choose “no pledge”.

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

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.

Cancer Update 2/13

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Gittin it done – Packrafting the Oregon Desert Trail!

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

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

Developments these past few days:

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

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

I finish up my first radiation treatments

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

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

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

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

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

It was a doozy! 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am about to start my second chemo treatment

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

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

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

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

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

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

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

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

It was incomprehensible. 

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

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

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

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

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

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

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

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

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

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

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

FINALLY!!! 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I struggle to sleep

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

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

I think about walking again

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

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

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

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

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

Cancer Update- 2/1/25 

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

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