I feel like a walking paradox at the moment. I’m more tired than ever, yet I’ve never felt more alive; I’m a little worse for the wear, but grateful beyond measure. I am so happy I want to shout it from the mountaintops, yet so humbled I want to sit in silence. It’s been three weeks since I finished radiation for breast cancer treatment, and two months since I finished chemotherapy. As if I don’t already feel a decade older, on October 10, 2020, I turned forty years old, officially leaving my Thirties behind.
It’s been a long road since I was first diagnosed with invasive ductal carcinoma, stage 2B, on February 3, 2020. I’ve written often about the importance of keeping a positive attitude, gleaning gratitude wherever you can find it, and cultivating flow and grace during this time. I’ve found these themes to be my guiding light throughout this tunnel-like process, but after months of treatment, and finally reaching the “end” of the road, I am also feeling the collateral damage my body has endured. I am simply exhausted.
Radiation was a long haul. Starting on Wednesday, August 19, I went in daily, Monday through Friday, to the Kaiser Santa Clara Cancer Treatment Center for a five-week regimen. The appointments were anywhere from fifteen to forty-five minutes long, getting shorter as the weeks went on. I scheduled my appointments for the afternoon, after work, and would drive the roughly forty minutes over the hill.
I was evacuated from the CZU Lightning Complex Fire for the first eleven days of treatment, which I wrote about in my previous post, and had just returned to work after a six month medical leave-of-absence. After eight rounds of chemotherapy that I finished in early August, I was pretty beat from the start. The threat of losing our home compounded the stress of treatment and going back to work, and I definitely felt overwhelmed. I’m a tough cookie, but the shots just kept coming.
Radiation fatigue can set in quickly for some people, or build over time, but it is some serious business. About ten days in, my fatigue really intensified. Although I’d adapted to a regular feeling of tiredness, I felt exceptionally beat, like I could fall asleep sitting up. Granted, I hadn’t been sleeping much while evacuated, as our cat would cry incessantly every night.
The hardest part of radiotherapy was positioning my shoulder for the linear accelerator machine. I would lie supine on my back, with my arms outstretched above my head. It was important to lie still and hold position once settled, but it sometimes took several tries to confirm. The nurses were very nice, and would gently move my left arm as needed to get me in the right position. However, I’ve separated this shoulder a few times, and it would freeze up being in these awkward positions, blood draining from my arm and falling asleep as the minutes passed. It was truly painful sometimes, especially with the plastic backboard pushing into my trapezius muscle as my contorted shoulder was placed into all kinds of uncomfortable positions. When I’d finally lower my arms at the end, I’d have to physically pull my left arm back down because my shoulder was so tight. This was the most challenging part about the appointments.
The scariest part was actually receiving the radiation. My whole left chest wall, from my lower ribs to my armpit and up to my clavicle, was treated; since the heart is on the left side, the risk of heart disease increases. Thus, breath holding is used to try to minimize exposure to the heart. The nurses spoke to me through an intercom from the other room, instructing me to Breathe In, Hold, and Breathe Normally. Knowing that my heart’s health depended upon me holding my breath just so, pushing out my chest cavity to protect it as much as possible, was a heavy load to carry. No pressure! It was much harder than holding my breath if I were standing up straight; try lying on your back and holding your breath for thirty seconds, and you’ll see what I mean. I focused intensely on keeping my breath in, and knowing how much it mattered made it all the more imperative to keep every molecule of air in.
There was a startling moment during treatment when I had been holding my breath for over thirty seconds, and I could still hear the machine; it makes a unique buzzing sound while delivering radiation. The nurses had instructed me to exhale and breathe normally, but I could still hear the machine sounding. Reluctant to exhale, I thought it was stuck on, and kept holding my breath.
Breathe normally, they messaged again through the intercom. Scared to let go, finally the noise stopped. I exhaled with relief, and then asked them if the machine had gotten stuck. They came in to explain that the machine can make noise when it’s not delivering radiation, kind of like warming up, and that it hadn’t been stuck on. I felt better understanding that, but it was a bit shocking at first.
Each day got a little more efficient. The actual treatments themselves took only several minutes; most of the time was spent aligning me in the exact spot, laser beams measuring every contour with precise angles. I received several freckle-sized tattoos to help map the treatment area, too. Every couple of weeks, I met with my radiation oncologist for a check-up of my skin, which started reddening about two weeks in, subtly like a mild sunburn. Skin changes are the most common side effect from radiation, and it wasn’t too bad at first.
By four weeks in, I was definitely getting redder, and my exhaustion was growing by the day. They’d warned me that fatigue worsens as you go, and they were right. I was tired of driving over the hill everyday, and one day in particular, I got a dead battery in the parking lot after treatment. It was one of those long days where I just felt beat, and then my car wouldn’t start after my appointment. Sitting in my car in the parking lot, I cried with surrender, feeling the build up of so many emotions. Just keep ‘em coming! I bemoaned.
I called my insurance for a jump start, and within the hour I was driving back home. The obvious symbolism was glaring, though: my battery was dead, my battery was drained. I needed a jumpstart; I was running on empty. For all the looking on the bright side that I typically do, I couldn’t deny that I was standing in the shadows. Despite my positive disposition, this whole experience was difficult, depressing, and draining.
My usual medicine of exercise when I’m feeling down about something wasn’t fully available, with my bike awaiting repair. My carbon rim had cracked, and I was awaiting a warranty replacement from Santa Cruz Bicycles; I also sent my suspension in to Fox for servicing during this time. The skies were so smokey from wildfires that I couldn’t go for a run safely, especially since I was in radiation. There is a risk of fibrosis in the lungs if you smoke or are exposed to smoke during radiation, so I really didn’t want to breathe hard when particulate levels were at dangerous, and sometimes hazardous, levels. Without my daily endorphin rush from exercise, I felt cranky, defeated, and unfocused. I knew I needed to get outside of my situation, to escape to the hills for some blood-pumping thrills.
What better time to demo a downhill bike?
I went to Northstar and rented a downhill bike one Sunday when the air quality was better up in Tahoe than it was here in Ben Lomond. I had never ridden one before, and after a few weeks off my bike, I was seething for some flow. I had an awesome time hitting the trails on a 27.5” Scott Gambler, my first time on that wheel size as well. I needed to hit the dirt, and it charged my batteries to be back on two wheels. It was a month before my bike would be back together in working order, the longest stretch of time off my bike in years.
The upside of being off my bike so long? My lymphedema all but went away. I had noticed some swelling in my thumb, fore, and middle fingers at the end of July, with shooting pains down the back of my arm by early August, signs of lymphedema. I continued doing my daily regimen of stretches and exercises, but it wasn’t until I stopped mountain biking everyday that I noticed an improvement in my symptoms. It was a blessing to see such a clear correlation between mountain biking and lymphedema, to figure out what was exacerbating it; it was the only thing I was doing differently that month.
I’ve been back on my bike for weeks now, and am being cognizant for any signs of lymphedema. I have noticed some hints of it returning after a couple of long rides, but mostly, I am symptom free. My physical therapist advised me to take frequent breaks during my rides, and to actually do the stretches while riding, when possible, like flat sections where I don’t really need both hands on the bars. So far, so good, but this is something I’ll have to keep a close eye on as time goes on. Hopefully, it will remain all but gone.
I finished radiation on Wednesday, September 23. By the end, I was extremely tired, and my skin was really red. The nurses were so sweet, cheering me on during my last treatment. When it came time to take my final breath in and hold, they emphasized for the last time. When treatment was over, I thanked them for their care and expertise, especially during a pandemic.
I physically felt lighter leaving the clinic after that appointment. No longer would I be driving over the hill and back everyday, and from now on I could look forward to healing. I slept in that weekend until noon, I needed it so badly, but the following weekend, I was ready to celebrate the culmination of months of treatment.
I got my port removed on September 25, two days after I finished radiation, and exactly six months after I had it implanted. I was so ready to get that thing out! The surgery was quick, but painful. They gave me a giant lidocaine shot, which hurt like heck, and it wasn’t nearly enough. I felt everything – the incision into my chest, a few minutes of tugging pressure, and then it being pulled out of my chest. She sewed me up with eight stitches; I felt every loop of that needle through my skin. I didn’t want to ask for another shot, as that would just delay everything, so I just lay there and toughed it out. It was pretty gnarly, but I was so excited to get it out I almost didn’t care. It was just another hoop to jump through in this obstacle course.
Ron and I had an incredible weekend away to Downieville and Northstar for closing day of the season at the start of October. We stayed at the Downieville River Inn on the Yuba River, and had an awesome mountain bike ride from Packer Saddle down the Downieville Downhill. Hauling down Butcher Ranch Trail, I saw a bear standing right in the trail! I slammed on my brakes and skidded to a stop as quickly as I could without crashing, and about thirty or forty feet away, it stoically held its ground. A few seconds passed before Ron rode up behind me, and I shouted Bear!
Startled, it sauntered uphill off the trail, and we stood to watch it for a quick minute before continuing on. Though black bears aren’t prone to attack humans, we didn’t want to linger too long. It was the second time we’ve seen a bear this Summer in Downieville; I think of all the other times we just didn’t notice them. It was really cool to see; I love animals so much! The next day, we rode Northstar, basking in the Autumn sun and bliss of riding well-maintained jumps and berms for the last day of their season.
It was a wonderful way to cap off treatment, but the collateral damage was becoming more evident. My skin had darkened to an extreme red, and was quite itchy. I was using all kinds of creams and oils – Calendula cream, coconut oil, vitamin E oil, shea butter, aloe vera – trying to moisturize my parched skin. My skin was physically hot to the touch, and my left chest wall was swollen. The seams of my clothing were irritating, and I could only take so much hot water in the shower. I was pretty uncomfortable. They had warned me that radiation has a cumulative effect, worsening seven to ten days after your last treatment, and they were spot on. Like clockwork, I’d gone from having a mild burn to a frighteningly dark burn. As the days went on, my skin began to peel. The fatigue stuck around, despite getting exercise everyday, and felt more intense than chemotherapy on some days.
Now, I’ve turned forty, on 10/10/2020. The numbers were certainly neat: 10 + 10 = 20, and 20 + 20 = 40. I had a fantastic weekend of mountain biking, disc golf, going to the beach, and I got to see my mom, dad, and stepdad to boot. Although I’ve finished the biggest parts of treatment – mastectomy, chemotherapy, radiation – now I’ve starting the next phase of treatment with Tamoxifen, an anti-estrogen pill given as chemotherapy, for the next ten years. I’ve made a lot of progress, but I don’t feel totally done with treatment.
My youth feels a little bit like a growing reflection in the mirror. I’ve spent so much of my life with my identity tied to my youth, whether it was my athleticism, vibrant energy, or appearance, and with its light fading, I can’t help but resent its growing absence. I am happy to still be alive, but I can’t deny the significance of this moment, of shifting phases in my life. Turning forty seals the deal. I feel more lucky than resentful of aging, though, and each day brings an opportunity to experience more and grow wiser.
It’s been a lonely experience, at times, especially in the time of COVID-19, to no fault of those who love and support me. I have been so blessed with such amazing, loving people in my life! Many days I was actually alone, merely because no one could come to appointments with me or visit during shelter-in-place orders. There are so many aspects of going through treatment – mentally, emotionally, and physically – that are impossible for me to fully describe, try as I may. I feel like I can’t quite get all the words out when it comes to conveying my experience with cancer, yet I continue to write, as it’s always been part of my process, helping me make sense of life’s major forks in the road.
Now that I’ve reached this milestone in treatment, I face the uncertainty of recurrence. It’s mildly unsettling to know there’s no guarantee anything worked, and that ultimately, I could die. I’ll see my oncologist every three months for the next two years, and will be on watch for any illness or issues; after that, I’ll go in every six months for three years, and then annually after that. I won’t be having a PET scan right now.
It’s scary how much my future depends upon me letting my doctors know if I’m not feeling well, because I didn’t feel so well at times over the last two years, and I went to my doctor twice because I was so concerned. As I’ve written about before, nothing came of it. My bloodwork was fine, there was no family history of breast cancer, and my large fibroadenoma in my left breast had been checked regularly for years; it was also likely obscuring my cancerous tumor, so I didn’t feel it until after it had grown measurably. The assumption was that my sleep apnea was causing my fatigue, and my occasional tension headaches and bouts with nausea were from pushing myself too hard exercising with too little sleep and nourishment.
After years of being on top of all my appointments and physical exams, and feeling so in touch with my body, I still can’t believe I didn’t feel any new lump until December 2019, even though I knew something was off. It makes my blood boil sometimes, but there’s nothing I can do about it now.
Although there were several songs that exemplified my cancer journey, my Cancer Playlist helped keep my spirits up; these were some of the songs that spoke the strongest to me. Music is healing, and whether it was dancing around my living room to it playing at full volume, singing along in the car ride to an appointment, or playing along with my guitar, music helped me feel less alone.
How Do You Sleep? by Sam Smith is a song I first heard when I was floating in a hotel hot tub in Calgary Canada, at the end of January 2020, right before I was diagnosed. We had an incredible snowboarding trip with family, and I felt charged. Soaking up the heat of the hot tub, this song played loudly in the pool room, which I had all to myself that day, and I instantly fell in love with it. Though the song is about infidelity, for me it represents the last moment of tranquility I felt before my life changed.
Anyone? by Demi Lovato perfectly captured how I felt after being diagnosed – alone and somewhat desperate for compassion, for an escape. I am in awe of her beautiful, powerful voice. Fade to Black by Metallica was my anthem for a bit; that song is so beautifully structured, with words that spoke to me right through my shaking heart. I learned how to play quite a bit of the song on my guitar, and relished in trying to play along to the song in my living room. Somedays, I felt like I was fading to black myself.
No More Tears by Ozzy Osbourne was the song I blared on the way to my first chemotherapy appointment. I’d done enough crying by then, and was ready to put my game face on and get it done. There is a victorious air to this song, of pushing through a challenge and persevering. I love the second bridge of this song, with echoes of animals filling the transition. This song just rocks!
Formation by Beyonce reminded me to keep my sense of sassiness and confidence…I Slay, I Slay echoing in my head. Anything by Beyonce will put you in a body moving mood! Blinding Lights by The Weeknd was an inspirational, energetic homage to what I was going through. I loved dancing to this song! It sounded like my battle with cancer. I equally loved dancing to Drake and Rick Ross’ Money In the Grave, a fast paced song balanced with a serious undertone. For years I thought the girl in the song said Latenight music, but Ron corrected me recently: it’s Maybach Music. Funny how we can mishear lyrics for such a long time before noticing it!
Roar by Katy Perry speaks for itself. I’m sure thousands of other women danced around their living rooms to this song, too! This is the perfect anti-cancer anthem. Savage by Megan Thee Stallion dropped in Summer, and the first time I heard it, I was blown away; such a badass song of female empowerment and celebration!
Sometimes, I felt like a savage myself – mountain biking through chemo, and keeping a good head on my shoulders. When everyone would complain about how bad 2020 was, I wanted to offer them a different perspective. Even after all I’ve been through this year, I still don’t think this was the worst year ever! Many people had it way worse than me, and others had it better than me, but life is always about making the best of what you’re given, not comparing the hand you’ve been dealt. The opportunities I had to gain wisdom, patience, gratitude, and strength were not lost on me.
I Still Believe by Tim Cappello is a soul thumping, hopeful message of strength and tenacity, exactly what I needed to get through cancer treatments. I always think of the movie The Lost Boys, when they perform this song on the Beach Boardwalk. It makes me want to sing out loud.
Shelter From the Storm by Bob Dylan was what I felt I needed this year. I longed for refuge, for a safe harbor from violent seas. Listening to this song, and singing along with my guitar, made me feel peaceful and calm.
Patience by Guns ‘N Roses was the embodiment of what I would need to help me through this entire process. This was all a huge test of patience, and I’ve definitely extended my patience span. When there’s nothing you can do but wait, you’ve got to adapt. It’s amazing what you can grow inured to when you have no other choice.
I am eternally altered by this experience, by these long months of fighting for my life. I’ve reached the end of a decade, my youth firmly behind me, and I have no guarantee of how much of this next decade I’ll get. Though it may not be in the forefront right now, the shadow of cancer will always be in my peripheral, in both hindsight and foresight, and carry the potential to return front and center at any given moment. I’m grateful to be alive today, but now that I’ve had the rug pulled out from under me, I’ll always be on alert for it to happen again. I never had a guarantee of another day before cancer, however; we never know when we’ll die. The only difference now is I have something specific to look out for.
I want to make the most of each new day and appreciate it for the gift that it is. My gratitude is high – for my health, for having a home that didn’t burn down, for my loved ones, for my fun lifestyle; for my eyebrows, lashes, and hair growing back in, which is awesome to see. Everyday since we got to come back home after the fire evacuation feels like a bonus day, like an extra gift. Like cancer, wildfire threatened to take all I love. I made it through this round, but the prospect of it happening again is palpable. I won’t live in fear, but I’ll always remember how it felt to almost lose it all – my life included.
I feel empowered by finding flow and grace in my life, doing the things I love. Coming close to losing everything has redoubled my passion for my humble little life, and whatever I have left of it. Reflecting back on the last year takes my breath away sometimes – did I really go through all that? Equally, I think about how I got through all that – with gratitude for all of the graces I’d been granted, a web of loved ones to support me along the way, and lots of exercise outdoors. The healing power of movement through nature is remarkable, permeating through the mind and body. It’s also pure fun, exactly the relief I needed while carrying such a heavy load.
There were plenty of inspiring moments throughout it all; stargazing in the mountains, conversations that probably wouldn’t have been had without my cancer diagnosis; short escapes out of town that relit my fire. Ultimately, it reminded me how strong I am. Humility is in my core, but I feel pretty darn fierce right now.
Though it may be the end of a decade for me, it’s also the start of a new one.