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.