Just say the year, and everyone has a story to tell. Life amid a global pandemic has stretched us all in new and, to use one of the most popular words of the year, unprecedented ways.
As the year comes to a close, I look back and see a fork in the road, etched deeply into my body and soul. This was the year my reality forever changed, from the initial shock of breast cancer diagnosis in February, through chemotherapy and radiation, and now, recovering from months of treatment while adjusting to life on Tamoxifen.
2020 was the year that my life as I knew it was pulled out like a rug from under me, flinging everything I knew and cherished into jeopardy. This was the year I learned, with all-encompassing certainty, that I am going to die – someday, but that day could be a lot sooner than I’d always thought.
Conversely, 2020 was the year I was reminded how much I loved my life, and how grateful I was for it. My patience and strength were tested incessantly, but my appreciation for life deepened, including its fleeting nature. We never know how much time we have, but when cancer comes along, it feels as though a clock is set on a countdown inside of you. Time is eternally precious, each day an opportunity you don’t want to waste. Opportunities abound in this world, regardless of covid or cancer. This year has delivered many chances for growth, reflection, and recalibrating gratitude, and as the year comes to a close, I’m focusing on all of the good that has persisted despite very real and trying challenges.
Astronomically speaking, it’s been a banner year. From the pink supermoon back in February, timed perfectly with my diagnosis; to the Eta Aquarids meteor shower; to the awesome comet Neowise; to the streaking fireballs of the Perseids; to the conjunction of Jupiter and Saturn lighting up the sky recently. There’s been no shortage of wonder and marvel to help put things in perspective. I’ve probably been out stargazing this year more than any other, and it’s been a powerful antidote to self-pity.
It’s also been a fantastic year for beaches and sunsets. I’ve spent more time at the beach this year than any other, even when I used to live a half-mile from the beach. The arcing horizon of the ocean has been an escape, comfort, and source of peace for me. I can spend hours at the beach carefully exploring tidepools, and watching the light play off the water.
Aside from a few weeks off my bike after my mastectomy and lingering fatigue, it’s been a stellar year for mountain biking. It’s been my main outlet, strengthening my body and mind. The freedom of flowing on two wheels, gracefully through the forest, is definitively therapeutic; hands-down the best anti-depressant I know of.
Most importantly, it’s been a remarkable year for gratitude. I love my little life with grit and passion, and I feel exceptionally protective of it after going through treatment. Sure I’d still like to make more money and have a bigger house, but I feel so lucky to have what I do. All I want is more time doing what I love, living my life with the people I love. More time on my bike, more crossword puzzles, more birdwatching; more going to the beach, playing guitar, snowboarding, dancing around my living room. More time with loved ones; more fun.
My husband Ron and cat Beau are beacons of joy and love; my family and friends a sea of warmth and connection. I am so grateful for the kindness, compassion, and generosity extended to me this year by so many. Some people really reached out, and it meant the world to me. My family, my sisters – calling me often to check up on me, and truly listening to me when I spoke, filling me up with comfort and love; my father’s regular socially distanced visits during lulls in the pandemic, always emotionally close to home; my mother and stepfather visiting on the front porch just to see me for a short visit while we could. My in-laws, whose love and care were steadfast. Some friends, and people I’ve not even met in person yet, only online, stepped up to show support, which moved me. I appreciate anyone who genuinely wished me well and took the time to extend that concern this year. Thank you to everyone who showed me love and empathy!
I wish the love of family and friends could cure cancer, but ultimately, I have to remain vigilant about my health going forward. I worry about recurrence everyday. My lymphedema, which had recently all but disappeared from my left upper arm, has come back a little, this time mostly in my truncal region, swelling around my ribcage. I continue to do my daily exercises and stretches, hoping to keep it at bay.
As I wrote about in my last post, I am having a hard time with Tamoxifen. I’m feeling better since, knowing that Tamoxifen is at least partly to blame for my blues, and have an appointment with my oncologist next week to discuss my side effects. I joke that Tamoxifen makes me a TamoxiMonster, but the sad reality is that it has made me feel depressed, fatigued, cranky, and my joints and leg muscles sometimes ache. My temperature regulation is shot; I’m either cold, or raging hot, tearing off clothes as I’m climbing uphill on my bike, sweating like crazy. I’m thirsty all the time, peeing all the time, gaining weight, irritable, and just overall not feeling like my old self. My old self: something I’ll never have back. Though I’m still the same person, a line in the sand has been dug so deep, there’s no going back to the innocence of youth, of life pre-cancer. Turning forty this October just sealed the deal.
As 2021 nears, I am reminded of the Serenity Prayer: accepting the things you cannot change, having the courage to change the things you can, and the wisdom to know the difference. This couldn’t be a more apt message for my experience with cancer this year. There has been so much out of my control, that I cannot change, that I had to accept as my new reality; so much adversity and loss. I could change the way I felt about it, however. Emotions, as instinctive as they may be, are also choices; we have some power to channel and release them, to change our perspective. That’s why I choose to do something everyday that uplifts and inspires me, that reminds me I am more than just a breast cancer patient, that reminds me how much bigger the world is than myself. Throughout treatment, the more time I spent outside, the better I felt. Whether going to the beach, mountain biking in the Santa Cruz Mountains, or hiking through the forest, every breath outdoors fills me with inspiration and strength, especially through the darkest moments.
We have a choice everyday as to how we spend our day, and how we feel about our circumstances. As I begin my new year of 2021, I choose to bring with me all the good that 2020 brought. People keep emphasizing how bad 2020 was, and yes, there was no shortage of legitimate crises. I certainly experienced a few trying ordeals this year! But as I like to tell my students with distance learning, Find another excuse. I’ve heard it all: My internet’s glitchy;My camera won’t work; My homework didn’t get sent from my outbox. 2020 has brought nothing but excuses; all I care about is what you’re going to do about it.
Pandemic or not, cancer or not, everyday brings the chance to appreciate life, to witness the magic of the world in the simplest of things; adventure beckons us daily. Life is begging to be appreciated, to be recognized, to be revered. It’s up to us to choose to heed its call, to open our eyes to its beauty. That’s one of the main lessons I got out of this year. Look up to the sky, look down at the tidepools at the beach, at the spores of fungi rising from the forest floor. Life persists, and life is eternally awesome; take notice! There is a rhythm to life that beats fiercely, a synergy of flow and grace. That’s what I’m choosing to stay focused on – in 2020, 2021, whatever year I’m lucky enough to be alive in.
My life feels a little bit like a post-apocalyptic movie these days. A torched Earth smolders as survivors scan the horizon for signs of life, all but unrecognizable under a silvery ash. While grateful to be alive, they can’t help but feel a bit shell shocked. Stunned, people emerge from the shadows, wondering out loud:
It’s been over two months since I finished radiation treatment for breast cancer, and I feel like I am living in such a land, wandering around my new reality of life post-cancer treatment. I feel like I’m walking in the burnscar of the CZU Lightning Complex wildfire that happened in the Santa Cruz Mountains in August 2020. The landscape is familiar, but the devastation is pervasive, even with signs of regrowth. The analogy to cancer is stark.
I am exceptionally grateful to be alive at all, but the uncertainty of recurrence, coupled with a gnawing anger about why I didn’t catch it sooner, haunts me on a daily basis. I’d read about Post-Traumatic Stress Disorder among cancer patients, particularly after treatment ends; it helped to know that some irritability, worry, and depression were to be expected. As I wrote about in my last post, I’ve been feeling a bit like Jekyll and Hyde, vacillating between feeling extraordinarily grateful for life, and feeling totally down about cancer.
Adapting to my new life post-treatment presents a slew of challenges I couldn’t quite appreciate until I was actually done with the bulk of treatment, chemotherapy and radiation. I am still in treatment, technically; about eight weeks ago, I started taking Tamoxifen, a daily anti-estrogen pill, in hopes of reducing my risk of recurrence. I may be on it for the next ten years. My current sadness and worry could be compounded by Tamoxifen, which is linked to depression and changes in mood, and I don’t doubt its influence.
As I’m learning, there are really no guarantees of reducing your risk of recurrence, despite all the measures you take. Accepting this reality has been the hardest thing to adapt to in my new life. When I finished radiotherapy on September 23, 2020, I felt a huge sense of relief and accomplishment. It was soon overshadowed, however, with a nagging, dubious worry: did treatment work? Were there still any cancer cells in my body, and if so, how many, and where? To what degree – if any – could I influence whether these cells would go on to proliferate? How much was within my control, and how much was just random chance? And what was I supposed to do with all this newfound fear I was feeling? I’ve been wrestling with these questions daily.
It is totally unsettling to know that there’s no promising anything worked, and that it could still come back. Only time will tell. Coming to terms with the mystery of what caused my cancer in the first place, and the ambivalence about my treatment’s efficacy, is tough. There’s a lot of grey area that I have to learn to live with, and as I’m starting to see, being mad about it doesn’t really help in the long run. I haven’t yet reconciled my anger, clearly.
I’m a pretty tenacious, strong person; a realist-optimist. I will sit on a ridgetop in sixty mile per hour winds in a blizzard, and relish in the potential that awaits in the descent on my snowboard. I’ll pedal up a punishing mountain pitch, day after day, because I know how fun it is to ride down it. I enjoy making myself uncomfortable – pushing out of my down-filled comfort zone, stretching my seams. I am a self-proclaimed master of delayed gratification, understanding the give and take of earning your turns. I love a good challenge, and I’m not afraid to work hard for a reward. I’ve been skydiving, rock climbing hundreds of feet off the ground, and I fly through the forest on my bike like a bat – agile, responsive, completely aware of its surroundings, guided by echolocation through the trees. I am human, of course, and I do crash into things from time to time; I’ve had some pretty scary – and painful – falls.
But breast cancer? This has been a bit much. This is by far the scariest thing I’ve ever dealt with, hands down. I don’t feel like such a badass in the face of cancer. I am learning to navigate this new world of uncertainty, and it calls for more humility than I’ve ever known.
I take pride in being an athlete, and an intellectual. It has been relentlessly difficult to accept that my strength and fitness didn’t prevent me from getting sick. Equally, it’s hard for me to accept that I’m having slight symptoms of chemo brain; over the last couple of months, I’ve noticed moments of it, as much as I hate to admit it. Sometimes, when I’m watching Jeopardy!, the answers don’t come quite as quickly, or at all; I can see the first letter of the answer in my mind, but the rest doesn’t come. Then again, I’m able to recall many answers with rapidity. There’s other signs, though. When I’m writing, occasionally I have trouble thinking of a word; it may take longer to identify it. There are moments when I can’t remember a fact or detail about a topic right away that I would typically know. Occasionally, I find myself repeating things, thematic as this time in my life may be.
It’s not constant, but I know myself well enough to notice a difference sometimes. I feel my brain working a little bit harder than usual. I do crossword puzzles and word jumbles everyday; I read; I practice my Spanish. I’ll do all I can to fight it, even if it is a normal side effect of treatment. A lot of it could be compounded by fatigue, but I hope it resolves soon.
The shame that goes with cancer is like nothing I’ve ever experienced. No holds barred, just writing about chemo brain makes me feel a little inadequate. Sometimes I feel like damaged goods, like I’m eternally flawed. There’s a feeling of failure so complete that it can blind you of your prevailing assets; like there’s something wrong with me – something terribly, irretrievably wrong. It’s torturous. I’ve gone over every detail of my life with a fine-toothed comb, analyzing everything from my past to the soup of pollutants I’ve been exposed to since my birth in 1980. The mystery of cancer is maddening. It is incessantly frustrating to have no clear answer for why I got it, or what I’m doing now that may invite it back. It makes me feel powerless.
In a way, I feel like I’ve been marked for death. Dramatic as that may sound, when you have a roughly fifty percent fifteen-year recurrence rate according to some studies, you might feel the same. Based on my young age at diagnosis (39), large primary tumor size at resection (44 mm), metastasis to 3 lymph nodes, and Nottingham grade of 9, I don’t have the best long-term prognosis. Of the dozens of articles I’ve read on NCBI, my favorite website of late, most of them outline elevated risks of recurrence for someone in my shoes. I was Stage IIB, with ER/PR+, HER2-, BRCA-, invasive ductal carcinoma. My odds aren’t as good compared to someone who was diagnosed at Stage 1 with a small tumor confined to one breast. I didn’t catch it early, and I’ll forever regret it. Granted, my odds maybe aren’t quite as bad as someone diagnosed Stage IV. Likewise, someone who caught it early may have a recurrence, while someone who caught it late may live to die old. There are shades of grey in the world of breast cancer, and none of us know if our cancer will come back until it does or doesn’t. The research is growing, and studies can provide estimates and averages, but cancer remains enigmatic.
I’ve been reading lots of breast cancer blogs and forums about life post-treatment, trying to hear some echoes in the cybersphere. I can hear them loud and clear; it comforts me when I read about someone else feeling how I do, worrying about recurrence, or having post-treatment fatigue. PTSD is mentioned often, and I feel like I may be experiencing some level of it lately.
I’ve been feeling extremely irritable, getting riled up at things that I may usually let slide. Someone’s nose sticking out of their half-on mask? I almost see red.
Cover your beak! I fume inside.
Someone stares at me stone-faced and doesn’t say Hi back on the trail?
Why does everyone always have to act too cool?! I lament internally. I really do wish people would say hello more often out on the trails, even during, or rather, especially during, a pandemic. Enough with the stoic aloofness already.
Admittedly, I am regularly annoyed. I’m not handling any sort of stress very well; I get an immediate pit in my stomach. I’m sensitive, and find myself more defensive than usual. I’m like an injured dog who just wants to be left alone to heal. I’ve got a real case of the cancer blues.
I felt some of it earlier during treatment, but now it’s worse than it’s ever been. Every time I don’t feel well, I wonder if it’s back. A headache, stomach ache, or even neck tension can put me on alert. My body, usually a source of pride and joy, feels tarnished by an insidious, lurking agent of death. I feel like a timebomb has been implanted within me, and I have no idea how much time is on it; it could be months, or years.
The uncertainty I live with now is all encompassing. It feels like I’m constantly waiting for the bottom to drop out. I used to be excited about the future, like the blank slate before me was inviting instead of menacing. Now, I feel worried about the future, untrusting. It’s like getting bitten by a dog; you’re always on guard for it to snap at you again.
Exacerbating matters is the loss of my beautiful, long hair. Though the Paxman cold cap saved my hair for the most part, it got really thin at the end and is pretty awful looking at the moment. I’ve cut it to about chin length, with my new growth spiking up a few inches long, coming in thick all over my head to my excitement. Overall, I lost probably over 75% of my hair. When I pull it back into a ponytail, it looks somewhat decent, but I don’t feel like my old self; I see yet another thing cancer has taken from me. Ultimately, I’m glad I did the cold cap treatment, as it was a blessing to keep my hair during treatment.
When I could see my tumor, right before my mastectomy, I was so terrified by how it had started to protrude out of the skin, as if staring me in the face. I am taunted everyday by the fact that I didn’t catch it earlier, that it hid so well under a well-known and large, examined fibroadenoma. I can’t help but wonder where else in my body it may have taken up residence. Like a zombie fire, lurking beneath the forest floor after a wildfire, cancer can smolder insidiously before roaring back to life, swallowing everything whole. Recurrence often means death within a few years.
I may flippantly joke that at least I don’t have to suffer getting old if I die young, but it doesn’t come close to easing my truest fears about dying from cancer. I think about how I’ll die, specifically; will it be pneumonia? Will I stop being able to swallow, and then die a couple of days later? Will I suffer a stroke or heart attack amid the stress of disease? Will it be sudden, prolonged, painful, or peaceful? Controlled, or random?
Or will I die from a distracted, texting driver on the road who hits me on my bike?
I’ve always had a pretty good handle on how short life is, and that we could die at any time, but I think about death far more often than I ever have these days. When I look back on everything I’ve been through this year – from diagnosis on February 3, to double mastectomy on February 26, to eight rounds of dose-dense chemo, to five weeks of radiation, to now being on Tamoxifen…it makes my head spin. I do feel like I’m walking through a post-apocalyptic world, where the scorched Earth is my poor body.
I am alive and kicking, however, and I have an insatiable lust for life.
I keep riding my bike, almost everyday, because it’s one of the few things I can do to instantly improve my mood, lighten my load, and put a big smile on my face. It’s been my refuge, my solace, my therapy, my motivation, and I am thankful for each and every ride. I don’t think about cancer when I’m riding downhill; I simply feel like a badass mountain biking bee-atch. I feel inspired, confident, grateful, and happy when I’m flowing on two wheels.
There is a curious, fighting spirit in me; a positive streak, refocusing my energy to gratitude, to all the things that are going well in the world, and all the people that do say hi back on the trail; to all of the incredible living beings that inhabit this amazing planet.
This is the flipside of the dichotomy of healing: the amazingly appreciative attitude that emerges after fighting for your life. On the other side of fear and anger is love and acceptance, a reverence for the miracle of life. I have had many days where I feel like I’m living in a dream, where I feel blessed beyond measure. I can spend hours marveling at tidepools, rock formations, birds in the forest. We had a heavenly trip to Yosemite and Mono Lake this Autumn, which felt like walking through a watercolor painting.
The recent King Tides have brought a wonderful world of exploration along the California coast.
I feel calm, content, and free when I’m out in nature, and I prioritize time outside. There’s a childlike wonder for the universe that thrives inside me, perhaps saving me throughout this challenging experience, keeping my perspective in check. Immersing myself in the beautiful, infinitely intriguing world – its plants, animals, geology, and complex history – has provided a stable escape all my life. I feel comforted when I’m learning something new, and it always reminds me how much bigger life is than me and my “problems”, real as a problem as cancer may be. Losing yourself in a good book, or good online article for that matter, is one of life’s simplest yet most powerful pleasures; it can be therapeutic, really. I am grateful to live in a day and age where so much information is at my fingertips. Learning serves as somewhat of an antidote to self-pity; you have to focus on something beside yourself, gleaning valuable information, which then makes you happy.
I am learning emotionally, too – to accept that feeling down is normal, and human, after everything I’ve been through this year. Forgiveness is paramount to my healing. I must forgive myself for not catching it sooner; for getting cancer at all. I must forgive my feelings of anger, fear, and sadness. I must forgive the collateral damage of side effects I’m experiencing post-treatment.
I’m also realizing how grateful I ought to be for the forty years I’ve lived so far. It’s been a pretty incredible four decades so far, and the more I reflect upon my life, the more beautiful a picture emerges. Maybe it’s rose colored lenses, but I’m lucky to have lived this long, in such good health and spirit, experiencing a multitude of adventures along the way. Looking back, I feel proud of the life I’ve lived.
Mountain biking and knowledge are pretty spectacular antidepressants, but there is nothing like love. My husband and cat – my boys – fill my heart, and our four walls, to the brim. My family are my rocks, whose encouragement and compassion mean the world to me. I’m a bit of a loner, but I am undyingly appreciative of my friends, whose camaraderie and connection makes me feel like I belong. I’m also grateful for the words of people whom I’ve never met, whose eloquence in describing their own struggles online help me put a name to mine. I am grateful that while I may feel alone sometimes, I am not actually alone. It also helped me understand that the side effects of Tamoxifen are real, and I’m sure it’s affecting me. Bless the gift of kindred spirits in this world.
The most effective cure to sadness is gratitude. Just thinking about mountain biking, learning, and the love of family raises my gratitude meter, and those are just a few of my favorite things. Music, dancing, gardening, birdwatching, running, yoga, hiking, cooking…there’s always something to do. Long walks on the beach? They’re loved by so many because they are one of the simplest yet most satisfying things in the world. I love – and need – my long walks on the beach as much as I need to ride my bike downhill.
Are gratitude, hobbies, and passions enough to take away my cancer blues? I believe so, and the more time I spend pouring myself into them, the better I feel. They serve in the very least as a positive distraction from cancer, and I’ll keep busy with them everyday. My love for life is unwavering, and if I can stay focused on that, I think I’ll ride out this wave just fine. There’s no shortage of inspiration in the world; sometimes you just have to focus harder to see it.
Here’s to having 2020 vision – in a year that demands it.
If adaptation and patience are the nature of this game, then flow and grace are its cornerstones.
I am six chemotherapy treatments in for Stage 2-B invasive ductal carcinoma, and cases of COVID-19 are surging in the United States, including my home state of California. The world is turbulent on many levels. There’s been a lot of adaptation and patience since I was diagnosed with breast cancer on February 3, 2020, at the start of the pandemic. As I’ve mentioned in previous posts, everything from a cold, to low white-blood cell (WBC) counts have caused delays in my chemotherapy. Once again, I had low counts in early June, and my fifth infusion was delayed a week until my WBC came back up.
I enjoyed the extra week off, visiting the tidepools in Santa Cruz, California, during minus-tides, which is absolutely breathtaking. I love spending hours exploring the biota and geology of beaches, especially on California’s tectonically dynamic coast. I’m a Natural History fiend. I find a lot of flow and grace living where I do, and am exceptionally grateful to live here!
Sea Stars & Anemones
On Friday, June 19, I had my first Taxol (Paclitaxel) infusion. It comes with a higher risk of allergic reaction, so the doctors prime you with 4mg Dexamethasone pills (brand name Decadron) – five the night before, and five the morning of; they also prescribe Pepcid AC, and Zyrtec the morning of. Due to the July 4 weekend in a couple of weeks, they delayed my next scheduled infusion #6 to Monday, July 6, instead of Friday, July 4.
One of my Geology Books
Chemo Infusion #5
During my infusion (Day 1), they closely monitored my blood pressure, heart rate, and checked in on me regularly for signs of allergy, but fortunately I didn’t react. The one thing I wasn’t prepared for was ice-packs for my hands and feet to help reduce the odds of chemotherapy-induced peripheral neuropathy. I’d heard this was a possible side-effect of Taxol, but when my nurse told me it could become permanent, my nerves flared. I didn’t have any ice for that first Taxol infusion, which was a marathon infusion – 6 hours from check-in to check-out! Two full hours of cold-cap (30 minutes before infusion, and 1.5 hours afterward), plus three hours for the infusion itself…it was a very long day in the chair. I brought my awesome Geology book, though, and read it like crazy, which was an effective distraction; a way to flow through the appointment. I imagined myself in the mountains I was reading about; exploring the striations of folded rocks melded together by forces so colossal beneath our feet. Learning is one of the best tools for distraction and finding flow. It really helps to lose myself in a good book – especially one about my favorite subject, Science. The more time I invest in learning about the world around me, the smaller my problems seem. There is grace in perspective. There is always something more to learn, coupled with an incessant need to know more. Flow is procured by the pursuit of knowledge.
I felt fine the next day (Day 2), and perhaps was energized from the steroid pills I’d taken the day before. I didn’t need to take the anti-nausea medicines, Zofran and Zyprexa, that I’d taken with the previous chemo cycles, as Taxol wasn’t known to cause bad nausea. I felt better knowing I didn’t need to take any pills aside from the ones I took before the infusion. The Zyprexa had even made me gain a few pounds, not that it really mattered.
Later that day, I went for a long bike ride, which has been my saving grace throughout this journey. It was the Summer Solstice, and a beautiful day. The escape, fun, and confidence I get from being on my bike is impossible to articulate. It’s all about flowing with grace. I feel like a rockstar when I’m on my bike!
It was also the ten-year anniversary of us adopting our beloved cat Beau, rescued from the streets of Santa Cruz by Ron. We spoiled Beau with treats and pets throughout the day, reminiscing through old photos of him as a Spring kitten.
When I awoke on Day 3, I was sore beyond belief; not just typical post-ride sore, but creaking in my bones, slowly moving up and down the stairs like an old-lady kind of sore. I’d heard that musculoskeletal pain was common with Taxol, called arthralgias (joint pain) and myalgias (muscle aches), especially on Days 3-5, and here the pain had arrived, right on schedule. I felt like I’d run a marathon the day before (something I’ve never done before; 14 miles is my longest run yet). My knees felt like they had no cartilage; my ankles weak. My hips were as tight as a guitar string. It was pretty excruciating, but I knew sitting around the house wasn’t going to help, so I forced myself out for a short hike.
My legs felt heavy, and everything from my hips down to my feet ached like crazy, but it did feel better than sitting. Keep on moving! I may not be able to mountain bike everyday through chemo, but hiking, yoga, and merely puttering around the house and garden all help. That night, however, I was super uncomfortable just trying to get to sleep; I put a pillow between my knees because I couldn’t stand the pressure of my kneecaps touching. I cried a little bit from the pain, but managed to fall asleep.
Sunday, June 21 was Ron and mine’s fourteen-year anniversary. Of all anniversaries, this one came with the least fanfare, understandably. I felt bad we couldn’t celebrate properly, but knew we’d make up for lost time eventually.
Monday, Day 4, was the worst. It hurt to walk up and down the stairs of the house; my knees felt shaky and weak. Determined to keep on moving, I forced myself out for a hike at Big Basin Redwoods, roughly seven miles round trip up to Buzzard’s Crest. Again, it felt better to move than to sit still. It was my first time up here, and the views were incredible – Pacific Ocean to the West, Loma Prieta mountain to the East. This sandstone outcropping is evidence of the San Andreas Fault system which makes the mountains we mountain bikers so cherish here in Santa Cruz. I was pretty much limping by the time I went to bed that night, but I knew it was better than if I’d just sat around at home all day. I didn’t take any pain medication because I don’t like taking pills if I don’t have to, and I wanted to see just how bad the pain would be; I needed to know what I was up against. I like persevering through pain.
View From Buzzard’s Crest, Big Basin
Another weird side-effect of chemo? You’re toxic for a few days after each infusion. That means closing the lid and flushing twice after using the toilet; using separate eating utensils, cups, and plates, all which must be washed carefully; not sharing any food or drink; and washing my sheets and clothing on the sanitary cycle. On top of the fatigue, dry skin, sensitivity to sunlight, and hair loss, you’re temporarily poisonous.
Tuesday, Day 5, was a much better day. I was sore, but not in pain. Ron and I had an amazing day – our first date out together in months! We went to the Verve Coffee in Santa Cruz and got mochas to go; they had a strict No Cash policy, like many other stores these days. We went to Schwann Lake and checked out the beautiful families of nesting cormorants in the Eucalyptus trees, which was mesmerizing, before heading across the street to Twin Lakes Beach for a stroll, and a body-surf in the ocean for Ron.
Afterward, we went to the Crow’s Nest Beach Market and got take-out dinner, which we ate outside on a dock at the Santa Cruz Harbor. It felt amazing to be out with my husband, doing something normal. It also felt great to see other people out and about after months of shelter-in-place. And, my bone pain was fading.
I woke up on Wednesday, Day 6, and felt totally fine. I’d made it through the hard part! I had a stellar bike ride to boot.
Thursday, Day 7, June 25, I woke up early to go up coast for a minus-tide exploration at one of my favorite beaches. It is night and day how different the landscape looks between low and high tide! I slowly strolled the beach, always avoiding stepping on living things. That’s most important when exploring tidepools: never step on anything living! It’s not worth seeing a creature if you have to step on even one barnacle to get there. Biota is lava! Don’t step on it. Tidepools can be severely impacted by hoards of people carelessly trampling them, so it’s imperative to Leave No Trace when exploring them. I spent five hours from the morning until afternoon, happy as a clam, in my element. These are some of the moments I live for.
Pacific Nettle Washed Up
That night, I had my first social event in months – since my last day at work on February 13, to be precise. Our awesome school principal, Mary, was resigning after nearly twenty years, taking a promotion over the Hill. We wanted to celebrate her years of dedication despite the pandemic, so a few wonderful teachers organized an outdoor gathering at a teacher’s home in Santa Cruz with a huge backyard. I was so excited driving over there; it didn’t occur to me how much I missed socializing until I was on my way! People! I would get to see people in a group, who I knew well and whose company I enjoyed. Friends! Camaraderie! Oh, Joy!
That evening was so uplifting. There were about twenty of us there, and we maintained social distancing quite well in the backyard. It was so good to catch up with each other, especially since I hadn’t seen any of them in over four months since I went on my leave-of-absence. I was giddy. I went home that evening feeling as though I’d been wrapped in a warm, cozy blanket. I’ve known many of my colleagues for thirteen years, so it definitely feels like family!
Friday, June 26 was equally fantastic. My spectacular father, Laird, came to visit me. We went out to lunch for our first time in months at one of my favorite restaurants in the San Lorenzo Valley – Casa Nostra. They have a huge outdoor patio for seating, where we enjoyed a leisurely lunch with perfect weather. I really cherish these dates with family, especially my dad. He was the first man to take me out to a really nice dinner back when I was a teenager, after all. We went back to my house afterward and relaxed outside in my garden, just talking for hours. It was one of those special days that simply evolves ever so beautifully. I felt so much love around me – from seeing my colleagues the day before, to this splendid day with my father.
That weekend, I got out on my bike to Demo, one of my favorite places to go for a long ride; I rode Flow Trail, the perfect name for what I need right now in my life.
I also went to the grocery store, which probably needs no further explanation; needless to say, it reminded me of the stressful times we are living in. I felt like I needed to get away from it all, to change my scenery and get out of town. Ron and I hadn’t been able to go anywhere out of the county for over four months (except doctor’s appointments in San Jose, and I made a trip in June to see my folks up in the Bay Area for the day), and I was really feeling like I needed a break. I have a positive attitude most of the time, but I’m human, too; this is a hard time I’m going through. Furthermore, we hadn’t enjoyed a hot tub in over four months, since February 25, the night before my mastectomy. We both love hot tubs, and usually take them often, but haven’t been able to go to our usual spot with SIP restrictions.
We resolved that it was time to get out of town for the night – somewhere not too far away, but far enough to change perspective, and certainly get a hot tub in. We also were due to celebrate our anniversary from the week before.
Monterey fit the bill perfectly. About an hour’s drive South of us, we set out on Monday, June 29 for what would be an idyllic two days spent amid ubiquitous beauty. It was sunny, fog-free, and glorious. We explored many different beaches, driving as far into Big Sur. We got scrumptious takeout from Rosine’s in downtown Monterey before returning to our hotel, which had its own hot-tub. It was absolute heaven – worth the escape in its own rite. It felt so amazing to finally take a hot tub!
Lover’s Point, Monterey
Ron & I
Monterey Bay Kayaking
Asilomar State Preserve
The next day, we rented kayaks in the morning and paddled out of Breakwater Cove around Fisherman’s Wharf and the Monterey Bay Aquarium, making a beach-landing on a secluded cove for a snack. It was just perfect! Rafts of sea-otters rolled in kelp beds nearby; salps floated near the surface like aliens encased in pods. Fish schooled near the surface, as seabirds dive-bombed them for lunch. Monterey Bay is a remarkable habitat, deserving of its status as a National Marine Sanctuary. It was the best two days we’d spent since February 3, and helped add some flow and grace back into our lives. We wore masks when we went out, and barely interacted with anyone.
Later that week, I headed up to my mom and stepdad’s house in Walnut Creek for the day to see my sister and her awesome three kids from Carlsbad, and my dad; it was the first time we’d all been together in months! We spent the day outside exploring Las Trampas Creek behind their house, and really enjoyed seeing each other.
For Independence Day weekend, Ron and I spent both days playing in the waves at the beach in Santa Cruz. We felt like kids together, reminiscent of when we first got together, when I was just 25 and he 36. We also had our first real dinner-date in months at one of our favorite restaurants, Chocolate, eating at one of their sidewalk tables outside on Pacific Avenue. It was an ideal weekend; one of those perfect Santa Cruz Summer days.
Sidewalk Dinner Date at Chocolate
Handsome Hubby Ron
Pacific Avenue, Santa Cruz
When Your Hair’s Thinning, Celebrate Your Body!
It capped off over a week of a somewhat return to normalcy; to socially-distanced socializing, and getting out a bit more. It would also spark a spike in COVID-19 cases, as we weren’t the only ones happy to get out after months of restrictions.
At the end of the weekend, I got my blood drawn in preparation for chemo, and alas, my bloodcounts were low. My WBC tanked to 2.7 K/uL (2.7 thousands per cubic kiloliter of blood, or 2,700), my lowest number yet; my platelets and neutrophils were low, too. On Monday morning July 6, the day I was scheduled for my sixth infusion, my oncologist informed me she was delaying my infusion by a week, until July 12.
At that point, I voiced concerns over so many delays: eleven days delayed for my first infusion due to a cold I had, and got a negative test for COVID-19; seven days delay for low bloodcounts; another seven day delay for low counts; and now, she was proposing a nine day delay since I’d already been rescheduled from July 3 to July 6 for the holiday weekend. I understand that delays are part of the process, and data reigns supreme. Patience is the nature of the game, but I was going on a month of combined delays. I’d come across some articles online citing reduction of survival odds when chemotherapy regimes aren’t followed on schedule, when there are too many delays, and despite my oncologist’s attempts to allay my worries, I was pretty bummed by the prospect of another delay.
An Over-It Moment
My doctor heard me loud and clear, and suggested I take a stronger Zarxio injection for two days to boost my numbers; I’d re-test Tuesday July 7 in the afternoon to see if my numbers were up. Fortunately, they spiked rather freakishly, with my WBC all the way up to 57! I was cleared for chemo on Wednesday July 8, though, and was relieved at not having to wait another week for my sixth infusion.
Chemo #6 went okay; my nurse gave me ice-packs for my hands and feet this time, saying she didn’t want me to develop neuropathy. I assured her I’d bring my own ice-packs for the next two infusions, and thanked her profusely for her thoughtfulness. The day was long again, nearly six hours from start to finish, but I was happy to be progressing along. I even came home to a gorgeous bouquet of flowers from a sweet friend. If all goes to plan, I should have two more infusions of Taxol left. I preface that with an if simply because it’s likely my treatment plan will be adapted again, and there’s really no guarantee that the chemo will work at all.
Gorgeous Bouquet of Flowers From a Dear Friend
Thank You, Orla!
You won’t hear me saying, “I beat cancer!” or “I’m kicking cancer’s butt!” because I know the odds aren’t necessarily that great in the long-term. Humility is important here. I’ve read enough research, and personal stories, to know that cancer can come roaring back, and when it does, it’s almost always incurable. I’ve told Ron before that he has to be ready for that news, should it ever come, because it’ll mean I’m looking at an extension of life, not curing my cancer. People can live for years with metastatic breast cancer these days, by far longer than years past, but there is still no cure – yet. If this beast comes back, I realize it’ll be a whole different ball game. While I try to celebrate the positive progress I’m making in my treatments, I know it’s just a shot in the dark for good odds. It’s like an alcoholic or drug-addict; you’re never really cured of your disease, but you learn to live with it and, hopefully, avoid triggers. You must remain vigilant for the rest of your life, and can never let your guard down all the way; which is why adapting, having patience, and gleaning flow and grace are paramount to my happiness right now.
I’ve written about it before, but I feel I’ve been blessed with many graces in my journey so far: the ability to take a leave-of-absence from work so I can truly focus on my treatment; getting my surgery done before such operations were delayed from the pandemic; a loving, rockstar husband who has gone above-and-beyond taking care of me emotionally, spiritually, and physically; a supportive, loving family, and a network of friends who check in on me, send me actual hand-written cards and letters, and even beautiful flowers; a roof over my head and food to eat; living in the Santa Cruz Mountains. And mountain biking! My gosh, it’s been a saving grace, deserving its own category. The more time I spend on my bike, the better I feel; it’s true therapy. Gratitude is key, and the list goes on for things to appreciate.
San Lorenzo River
I was blessed with an exceptional birding experience recently, right in my own backyard. As I was reading the book What It’s Like to be a Bird by David Allen Sibley, aptly given to me by my father, I was soaking in the pages about hummingbirds, and how their neck feathers are iridescent, flashing brilliant color directly at whomever’s looking at it. As I’m reading these pages, a gorgeous Allen’s Hummingbird buzzed the Salvia blooms right next to my garden chair. I sat motionless, squinting my eyes and closing my mouth to blend in further. The last thing a bird wants to see next to it is a pair of large eyes and a big mouth facing it – clear signs of a predator. Over my years of birding, I’ve gotten pretty good at blending into the background so as not to startle them. I took Ornithology classes in college and got into birding at UC Santa Cruz, my alma mater, but I learned so many interesting facts from this book.
As I sat there watching this beautiful bird gather nectar from flowers, it surprised me by flying right up in my face to check me out. I was wearing a bright, orange ball cap, which probably caught its attention, as its main color is orange. After inspecting me, it flew right next to my left arm resting on the chair. I didn’t move a muscle as it buzzed right by my arm, close enough to feel the wind of its feathers, within maybe half-an-inch of me. This was the closest any bird has ever gotten to me. I cherished the moment before the little hummer took off for the next Salvia plant. It was such a special experience!
I’ve also been graced with a boon of celestial events: a pink Supermoon back in March; a mind-blowing meteor shower of the Eta Aquarids, with slow-flying meteors gracing the sky every ten seconds or so; and many stargazing night hikes in the Santa Cruz Mountains. We livestreamed the solar eclipse on the Summer Solstice, which wasn’t visible in North America, and watched the recent penumbral lunar eclipse on June 13, albeit barely visible. I love how small I feel when I look into the sky; it is so comforting!
Full Moon Hike
Now it’s Thursday, July 9, 2020. I’m bracing for the musculoskeletal pain to kick in tomorrow, lasting for a few days, but I’ll see. Hopefully it won’t be too bad, and I won’t develop neuropathy in my hands and feet. I hope I can complete my last two infusions on schedule, finishing early August if all goes to plan.
The Paxman Coldcap is mostly working, but I’ve lost well over half of my hair by now. My part and crown are thinning dramatically, and I have bald patches above my ears. Adriamycin, the chemotherapy drug I had for my first four cycles along with Cytoxan, almost always makes you lose your hair, so I am grateful for the hair I do have. Taxol is also known to cause hair loss, but the odds of the coldcap working on it are better than Adriamycin. Creative styling helps to cover my part in the meantime. It is too hot, and I’m too athletic to wear a wig, so hopefully I can make it through treatment without having to cut it all off. I’ll just have to wait and see. My eyebrows and eyelashes have also thinned quite a bit.
My Thinning Part & Crown
A Common Sight
I’m due to return to work on August 24 for the first day of school, whatever that will look like. We have a few contingency plans in place for a hybrid schedule of part home, part in-person schooling, but it all depends on what the data for COVID-19 shows. We are all living in a world of uncertainty and waiting, a world in which adaptation and patience are the nature of the game, just like breast cancer. Who knows what August will bring? I’m due to start five weeks of radiation therapy after chemotherapy, something I’ll likely be doing after school each day.
For now, all I can do is focus on all that’s good in life, for there is still far more good than bad. There’s a lot of gratitude, patience, adaptation, flow, and grace to be found. Though it’s somewhat deserving of its Bummer Year status, 2020 ain’t all bad. We’re all just adapting to some kind of new normal.
It’s been over twelve weeks since I had a bilateral mastectomy with reconstruction, and I am three infusions in for chemotherapy. I am overall happy with how I am healing, though I still have a ways to go in my treatment. I recently took off my surgical tape and saw my scars for the first time; I waited ten weeks to remove the tape, as my doctors recommended leaving it on as long as possible for the best cosmetic result. They were definitely right – I am pleasantly surprised by how minor they are. Granted, I will have to almost repeat this process once I have surgery to replace my expanders with implants, and will have to go through the healing process once again, but I am feeling really positive about the results and celebrate the success of my surgery. I have full mobility and strength, just a slight numbness in my left armpit that feels like it’s half-asleep.
Thus far, chemo is going rather well – at least compared to what I had initially expected. Chemo – the word evokes thoughts of skeletal, vomiting patients, beat down with fatigue like a fly from a swatter. At least that’s how I imagined it. Sure, I’d read how anti-nausea medicines and careful dosing had improved over the years, but I feared the bottom would drop out on me once the toxic yet life-saving sera would be injected into my jugular vein via my PowerPort.
My first infusion brought one brief episode of vomiting, but aside from that, I haven’t been sick with nausea. I am taking the anti-nausea medications as prescribed: for three days after each infusion, I take Zofran twice a day, and Zyprexa and Decadron once a day. Thus far, the regimen is working well for me. I also administer Zarxio for seven days via a shot in my stomach to stimulate white-blood cell production, although my neutrophils and white-blood cell counts tanked after my second infusion, and they had to delay my third infusion by a week, giving me five more days of Zarxio to compensate. My numbers rebounded, but every two weeks when I get tested, we’ll keep a watchful eye on those numbers. I have nine more rounds to go; I am 25% through my scheduled infusions. With the risk of contracting Covid-19, now is the time when I am immunocompromised, and should be especially careful.
I am using a Paxman Cold Cap, which I talk about in the video below. I have lost quite a bit of hair, as to be expected even with a cold cap, and still have more infusions to go. We’ll see how long I get to keep my hair for, but I am extremely grateful for what I’ve still got. Hair loss is most pronounced above my earline, but it’s thinning everywhere else.
Heartburn has been a bit strong for a few days after each infusion, but my appetite has been strong, and I am eating well. That’s a side-effect I wasn’t expecting, though I was forewarned: ravenous hunger for a few days after treatment. I am intensely, tear-down-the-house famished sometimes, and have been eating more than usual! That skeletal, starving image of a chemo patient I had? Knocked out of the water. I am thrilled to be nourishing so completely, as I visualize the apoptosis of my cells – generating waste from their organelles, stopped cold in their mitotic division, desperate for the nutrients to rebuild themselves.
With all that waste production, water becomes paramount. I have always drunk a lot of water; I may drink upwards of 300 ounces of the life-giving elixir throughout the day, depending upon the intensity of my activities. Thirst is a pet-peeve of mine; I abhor a dry mouth. As a teacher, I am used to speaking often throughout the day, and having a well-hydrated palate is essential to keep my oration flowing. My students know me for walking around with a giant 64-ounce Kleen Kanteen water bottle in the classroom, always encouraging them to do the same. Water is a basic necessity for life, but when you’re going through accelerated cellular death within your body, it becomes even more essential. I find myself incessantly thirsty, always needing more of it these days.
Dry skin will make you crave more water, too. I’d been warned, like all of the side-effects I’m feeling, that my skin would shrivel and crack like a sun-baked prune. I invested in my favorite L’Occitane Shea Butter, and shea-butter rich lotion. My skin drinks them like milk everyday, and it helps fend off the advanced aging my skin is undergoing.
The biggest side-effect has been fatigue. It’s not like I am sleeping long hours, or taking lots of naps, but there are times I just feel spent. I really notice it when I’m exercising, something I’ve built my life upon. I am in excellent cardiovascular health, which was probably a good place to start going into treatment; however, I fatigue significantly faster than normal now. When I’m climbing uphill on my bike, I may take several breaks to let my heartrate go down and catch my breath. I get winded, like I am maxed out. I’m not in a hurry, so I take breaks as needed, but I definitely feel the difference.
There’s also mental fatigue. I don’t know if it’s chemo brain or not, but sometimes I have to rest my cogitation of complex information. I love reading about Science – online, in books, and of course by reading the natural world around me. As a Science teacher and Environmental Studies major who took a lot of Science classes in college, my curiosity for learning more about cancer and my treatment is like an urgent alarm. I can’t help but want to understand more, though I certainly don’t understand it all, as someone who didn’t major in Biology or a similar field. One of my favorite websites is the National Center for Biotechnical Information, NCBI. This is where I find articles related to my recurrence and survival rates, whether radiation is unequivocally recommended for a patient in my situation (there’s some controversy), and how variables like supplements and nutrition may or may not influence the efficacy of my treatment. It is fascinating, and endlessly interesting; a great escape, albeit a harsh dose of reality at times. Sometimes, I have to remind myself that the information will still be there later, and put that reading aside because my brain feels oversaturated and exhausted. While not overwhelming, I can feel myself tiring out on pithy topics more than usual lately.
At Home With Wildflowers
Emotionally, I’m lethargic as well. Though I’m leaning into this experience, warts and all, I’m tired of feeling so much – feeling uncertainty, sadness, worry, and a pervasive inquiry of What did I do to bring this upon myself? The blame-game is real, and it’s not productive. When I first was diagnosed, I was grasping at straws trying to find a culprit for my young diagnosis; doctors have all been quick to stop me in my tracks and force me off of the blame-train. You will probably never know why you got cancer, so stop beating yourself up, is what they said. No point in ruminating over every imperfect decision I’ve made, over the plethora of chemicals I’ve been exposed to as a child of the eighties and an adult of the millennium, over the catechins from green tea I didn’t drink, or the children I didn’t have when I was younger that would have likely lowered my risk of developing breast cancer.
That’s probably been the hardest part for me to reconcile with – the mystery of cancer. There are times when I feel like it’s my fault, or I’m damaged goods somehow, but those moments of self-pity are almost immediately replaced by the gratitude for what isn’t damaged, what isn’t cancerous, or imperfect, or faulty within my body. I have to focus on all that is working well, all that is miraculously still thriving each day. Death is the great equalizer of life, and all of us will get there someday. While we’re here, we owe it to ourselves to appreciate life and our bodies, faulty as they may be.
Thus, when people ask me how hard this has been, and how am I really doing, as if I’m not being forthright otherwise, I can honestly tell them I’m doing well. Well is good enough; wellness is health, and without that, we have nothing. Turning my energy toward wellness as a simple yet vital baseline, recognizing the path I’m on is one toward increasing wellness, hopefully. Because at the end of the day, the biggest fear I have is dying young. That fear probably won’t ever go away, but I believe I’ll adapt to live with it without letting it overwhelm my perspective for the long-term.
Santa Cruz, CA
Am I ready for a break? A real vacation? An escape from dealing with cancer amid a global pandemic? Yes, infinitely so. I would love to get out of town and have some fun, go in a hot tub, swim in a big pool, order room service. Though I am a big fan of relativity – from the scientific theory itself, to the idea of finding comfort in the fact that someone always has it worse than you, and someone always has it better, so best not to compare yourself too much to others – there are moments when I accept the solemnity of my situation. Yes, things could be worse, but it sucks to get breast cancer, especially at thirty-nine years old, near the prime of my health; to imagine the next ten years of my life taking Tamoxifen, throwing my body into early menopause; to imagine the gravity of a metastatic recurrence, of a prognosis of months or years to live. I long for the bliss of carefree life pre-cancer. None of this is fun! I would love to take a break from all of this, from this new job I was enlisted in against my will.
I’m doing well considering what I am going through. I’ve always been one to make the best of a situation, as I think is innate within all of us, but I’m also a pragmatic realist who doesn’t like to sugarcoat or bury anything. I am trying to seize everyday as best I can, learn all I can through this experience, and hopefully, continue to live a happy, healthy life for as long as I can. I feel incredibly grateful to be sheltering-in-place in one of the most beautiful places, Santa Cruz, California. From the beach to the forests, there is no shortage of natural wonders to keep things in perspective.
Freedom to Roam
Keeping active helps me flow through this torrent of rushing river rapids. I feel like a rockstar when I’m on my bike, like I can do anything. The pure act of play becomes ever more important when going through a hard time. Keep on moving – some of the simplest yet best advice I’ve heard. It’s not just physical, but mental, too. Keep thoughts and feelings moving, keep learning, keep deepening your understanding. Stay curious.
I try to keep moving as much as I can, but there are times when it’s okay to just float among the flow of the world, to surrender yourself to the currents of factors more powerful; to accept that while we have some control to keep moving, sometimes we have no control over where we are going. I try to make peace with that, and not drive myself crazy worrying about where the next rapid or waterfall may lie on the river of life.
We have no guarantee of time, but I can guarantee the world will keep on going whether I’m here or not; I find solace in that. A mote of dust among the abyss of the universe, made of the same simple elements, I’ll drift along suspended in the rich breath of life, until I become the seed for a raindrop, condensing into a water molecule, precipitating with a gentle splash back into the watery realm of Earth.
Dream legs – that phenomenon of being in a dream, and trying to run quickly, but not getting anywhere. No matter the urgency or effort, you cannot get ahead. The horizon doesn’t near; there is no sense of forward movement. Dream legs can happen in reality, too. When we are trudging through the swamp of adversity, it feels like we’re not making any progress. Once you’ve thought you’ve moved ahead, the horizon has only pushed back equal to your steps.
Dream legs – how living with breast cancer feels to me.
The diagnosis was one of the hardest parts; the surgery and recovery were like a marathon I had to physically fight my way through. I moved closer to the horizon when I had my bilateral mastectomy almost three weeks ago, but once I marked that step, I realized now is when the hard work begins. Now is when things are going to really get tough. Now is when I start nearly five months of chemotherapy, and the thought gives me dream legs.
I got my drains out on Friday, March 13, which felt amazing after sixteen days with them. Well, it didn’t feel amazing when they were actually being removed; that hurt a lot – but only for several seconds. Being free of these drainage tubes? Ecstatic. I didn’t have much time to celebrate getting them out, however, as I met with my medical oncologist that same day. That meeting took the little wind I had right out of my sails.
Suddenly, but not surprisingly, it was time to start the next step of treatment. The surgery ship had sailed; the recovery time had ended. This next voyage seems like the hardest part.
I received so much information from the doctor about my chemo plan. Initially, they had thought I might need surgery, radiation, and then a two-month chemo cycle. After the new pathology report from surgery, however, my treatment plan changed, which I clearly understood would happen.
A 20-week chemo cycle, with three different drugs – Adriamycin, Taxol, and Cytoxan, was elucidated to me. I would get some bloodwork that day for baseline readings of things like white blood cell counts and platelets; I would need to get a MUGA scan to assess the strength of my heart. I would need to get a port implanted in my chest for chemo infusions. That surgery would be under twilight anesthesia, and was scheduled for March 25. The radiation oncologist later informed me that I was to have five weeks of radiation after chemotherapy. I envisioned myself trudging with dream legs through a mire of ugliness.
Old Bras I Don’t Need Anymore
My New Breast Cancer Journal
I went from healing from my mastectomy to preparing for chemo pretty quickly. Though I’d known it loomed ahead, I wasn’t sure what exactly lay next until this appointment. It was a bit of a tough one. My husband Ron sat patiently with me as we both took in all of the information. Though I’d been healing from surgery and knew there was a lot more to come, it was overwhelming to get dates and times laid out.
I left feeling like I hated this place; every time I left, I had worse information than before.
I was deflated. And literally, too, as my expanders had lost some air since the surgery. I would have to wait to determine if I was getting radiation before I could have the expanders filled with saline; the plastic surgeon will need to know soon, as radiation affects the chest skin and what size I can be.
I was really angry and depressed that night. I’d been so excited about getting my drains out, and all of that energy had been sapped. Chemo scares the heck out of me, like many other cancer patients feel. There are so many unknowns – how will I respond, will I have terrible nausea and vomiting, will I have that terrible bone pain I was told about; the list goes on. Though I have a general idea of the side effects, everyone reacts differently. The very thought of it is claustrophobic: I will have to sit still for two hours while poison is pumped through a port in my chest to my bloodstream. It’s hard for me to sit still for two hours, let alone while I have an infusion coming in through my chest. I am really not looking forward to it.
Mostly, I’m not looking forward to the side effects. I will see how I respond, but no matter what, it’s sure to be an uncomfortable and challenging experience. Losing my hair? I am really sad about that; it’s part of my identity, my image, my sense of beauty. I’ve had long hair most of my adult life, and I’m attached to it on a vain level. Perhaps I will be open and strong enough to redefine a new sense of beauty for myself, but right now, I’m envisioning myself having a really hard time with losing my hair. I recently cut it shorter to start getting used to having less of it. Though I’m trying cold-caps, there’s no guarantee they’ll work.
I feel like I’m only about to start the really hard work, the excruciating part. I thought I’d made some progress with surgery, but I feel my dream legs slogging through the swampy mire of chemo. I could apply my athleticism to my surgery and recovery, a bit, but I’m not sure how much it will help me through chemo. I plan to exercise as much as possible, but I really won’t know how much until it starts.
I imagine there will be times I feel like the horizon is moving back; like I am getting nowhere. I don’t want to get stuck in the mud, for my spirit to get stuck in the heaviness of chemo and its side effects. I don’t want to sink in the quicksand.
I am terrified of chemo, but there’s only one way to get past that – and that’s to get started. For now, that may mean waiting a few more weeks. I may be walking with dream legs toward a moving horizon, though I am happy to be walking at all.
It’s been three weeks since surgery; today is Wednesday, March 18, 2020. Tomorrow is the Vernal Equinox, though Monday was our true equinox for the Santa Cruz area (the sun rose and set at 7:17, making for equal day and night). I am feeling pretty good overall; no nerve pain, not much tightness, and I have almost all range of motion in my shoulders. Lifting and stretching my arms overhead is still a little tight, but yoga is helping to undo that. I feel like I’m healing up strong. It is nice to be showering like normal again!
I am continuing to take brisk hikes and stay busy as much as I can, but there is a sober undertone to it all: the coronavirus pandemic has exploded. Santa Cruz County, along with several other Bay Area counties, were ordered to shelter in place as of Monday night. That means only we can only take essential trips out of the house, including going to the grocery store, doctor’s appointments, and going for walks. Thankfully our leaders recognize the need to leave the house for a walk. If I see someone on the trail, we are all careful to stay six feet apart and pass purposefully along after saying an obligatory Hi. Gatherings are restricted to fewer than ten people. This order will last until April 7, at the earliest, and schools are likely going to be closed until the end of the school-year.
No one alive today has lived through something quite like this. There are thirteen confirmed cases in the county as of today, and this viral tsunami hasn’t crested yet. Santa Clara County has 155 cases as of today. Understandably, hospitals are getting ready for an unprecedented, and potentially untenable, influx of patients suffering from Covid-19. I worry for all of the people who are going to suffer from this.
Today, my MUGA scan scheduled for this Friday was canceled due to the coronavirus. I have a port implant surgery scheduled for next Wednesday, March 25, but understand that could rescheduled, too. Which leaves me in a tricky place regarding my next steps of chemotherapy – when will it start? If it is delayed, how much does it matter?
It’s another lesson in patience, and its adaptive nature. It is imperative that I go with the flow right now, and not stress out if my chemo regimen is postponed, because I feel totally vulnerable at the bottom of everything. I am at the mercy of the medical industry, and their justified triage of higher-priority patients who will simply need to breathe with the help of a ventilator, granted there are enough of them. These are legitimately scary times for everyone, cancer-patients or not. Matters of life and death are on the table for our most vulnerable populations. I am relatively young and healthy; I understand, and support, prioritizing higher-risk patients over myself right now. My doctor said chemo typically starts no later than six weeks after surgery, and with my surgery date of February 26, that puts me at April 6, a little over two weeks away. Things should go on as planned, but I’m keenly aware, and it’s been communicated to me, that things could change. They’ve done a great job of contacting me when things need to be rescheduled, so I’m trusting there are caring professionals working from home to keep people’s treatments from slipping through the cracks. Hats off to our doctors, medical professionals, and support staff who will be heroes for who knows how many people in the months ahead.
As I wait for my next steps, still scheduled as of today for my port surgery next week, I am hopeful that my treatment will continue in due time, no later than April 6 as my doctor assured me. I could use a little bit more time; I am uncertain about whether or not to have radiation therapy. Even though it was prescribed as part of my treatment plan, I have the right to deny it. Why would I do this? Collateral damage – paying for that radiation later in life with another malady, another form of cancer. Radiation increases your risk of both heart and lung cancers, although they use breath-holding techniques now to limit exposure. It will also change my skin around my left chest wall, possibly leading to fibrosis, or scarring around my expanders. This would preclude me getting a proper implant at the end of treatment, and would mean trying a flap surgery on my left side; they will not have to irradiate the right side. The cosmetic result may not be as good. I’ve heard many times Life over breast, meaning one should never put the cosmetic value of a breast over health or increased longevity. However, given the other side-effects of radiation, including prolonged fatigue, perhaps my statistical increase in life-expectancy isn’t worth it.
Collateral damage is something I’m quite concerned about at thirty-nine years old; I’d like to think I have some years ahead of me to look forward to. At what cost is a slight increase in my odds of ten-year survival worth it? What price am I willing to pay if I am wrong? What if I opt not to have radiation, and I have a recurrence in a different part of my body ten years from now? Thirty years from now? Will I always look back and rue the day I decided not to follow my doctor’s urging? I am open to poisoning my body from chemotherapy, hellish as it sounds, but I am skeptical of radiation in a different way. It’s a different kind of monster, in that it can alter cells in ways only measurable after many years. I’m no expert on radiation, but I’ve been reading enough to know it is far less dosage than used twenty years ago, even ten years ago. It’s still exposure, though, and even if it’s targeted to my left chest wall, what might it do to the rest of my body? I am inclined to follow doctor’s orders most of the time, and am feeling like I will probably follow their order for radiation; I’m just not totally sure yet.
As I ponder my next steps, I am grateful for this shelter-in-place time. I’ve basically been told to keep doing what I’ve been doing over the last few weeks since surgery – solo hikes, beach, and time at home. It’s an introvert’s dream – no forced socialization, just lots of time to yourself to do what you love. I love people, of course, but I cherish time alone. There is always something interesting to dive into, something fun to do! I can keep myself entertained just fine. When I’m not out hiking or at the beach, I have a lot to do at home, lots of books to read, things to research, gardening, guitar to play, and some indulgent television to watch for good balance.
San Gregorio Fault
I ran for the first time last night on the beach, which felt like freedom! I didn’t run too fast or too long, but it felt incredible and got some more endorphins going than power-hiking can. It was the hardest my heart’s beat since before surgery, something I usually relied on my bike to do. I love a good cardiovascular workout; it’s good for the heart, the skin, the whole body, and just as importantly, the mind. The runner’s high is real.
This is the longest stretch of time I haven’t ridden my bike for in seven years, and I miss it like crazy. I was able to mount up for the first time today, and might try a short, flat ride on pavement tomorrow. I am cleared to do flat, smooth, low-speed riding where my risk of falling is low after three weeks; after six weeks, I can start easing back into downhill riding. I’ll have to see how my body responds, and most of all, avoid crashing!
And avoid getting sick after chemo has started. If I get the coronavirus now, while my immune system is strong, I’d probably be just fine and recover at home like most people. If I get it after I’ve started chemo, however, I could develop pneumonia, and it could be far more serious. Everything now is on a wait-and-see basis.
This cancer-patient’s patience must adapt even more. Everyone’s patience must adapt during this crisis. I’m going to keep on walking as much as I can, going outside and appreciating nature as much as I can, maintaining a safe distance from people, few as they may be in more secluded spots.
Art of Erosion
San Gregorio Fault
I must become more patient for the reality of chemo, of sitting in that chair for two hours, of dealing with whatever side effects will come. I must be patient with myself when I feel nothing like myself. Regardless of improvements in chemotherapy drugs, I don’t expect any of it to be easy.
I must be patient with feeling like I have such heavy dream legs, to feel like I am walking in place, not moving ahead. There’s an urgency to cancer treatment, but there’s also dynamic forces at work here beyond my control. While I expect to start chemo within the next few weeks, I accept the reality that it could be delayed.
I’ll have to keep walking ahead, dream legs at work, because I can’t just sit at home all day. Nature is my therapy, especially right now, and being outside is the happiest part of my day. It makes me forget that I am waiting to take back my health, that I am waiting to attack terrorist cancer cells in my body, left over from the original tumor. It makes me forget that I have cancer at all, even if only for a few minutes. It makes me feel like I am moving forward, I am progressing; that I am not bound by dream legs running in place toward a moving horizon.
I’ll keep on walking, dream legs or not, because it beats the alternative of sitting-in-place during this shelter-in-place.
The sky is falling, yes indeed
Pieces of water vapor collect and fall to the ground
Some as light as snowflakes, others heavy as lead
Defiant thunderheads roar with authority
Before submitting to prevailing winds
Persistently pushing in off the Pacific
Their clash of wills parting the darkening sky
Clearing a porthole of sunlight
Piercing through like a shining sword
Cutting through the storm
A bird sings unaffected, Spring’s pull so forceful
Only one thing is important now –
Life – the continuation of, extension of, preservation of, reproduction of…