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.
The art of gratitude is something we’re never done with; there’s always room for deepening our appreciation. There are marked times in your life that most certainly demand your full attention – to what is going well in your life, to what is good, helpful, and sustaining. We all want to live in daily reverence for life’s simple blessings, but we’re also human, and days can blur into weeks, into years, before a major hurdle comes our way, beckoning us to find the silver linings as we stand under the inevitable passing of life’s occasional rain clouds.
Pacific Ocean View
There are some events that, despite our aversion to their occurrence, end up teaching us more than we could ever have anticipated; that shift our thinking in directions only possible under such duress. One example of such adversity is cancer.
I’m in the early stages of a 16-week chemotherapy regimen for Stage 2 breast cancer. It’s been two months since my mastectomy, and I’m two infusions in. No visitors are allowed right now, so I’m bringing books to keep busy during the appointments. I am coping fairly well with the side-effects so far, save for a few bouts of nausea the first round, and some fatigue. I get pretty tired sometimes and need to rest or take a nap.
Second Chemo Infusion
Then, there are the shots in the stomach for seven days, which I’ve gotten the hang of; technique matters, of course! Squeezing the skin, injecting quickly at a 45° angle, followed by a slower injection seems to work well so far. There’s also a slight numbness and tingling in my left armpit and upper arm that feels like it’s half-asleep. My port is on my right side and not giving me any problems, except that I have a roughly one-inch scar from it, and it hurts if my port is hit directly. I was changing the pillowcases the other day, and when I pulled off the case, I hit my port with the back of my hand; it hurt so bad I winced and grimaced, and it throbbed for hours afterward. It’s not something I want to hit any harder!
There are so many layers in the effects of cancer – some easily seen, others invisible if not pointed out. There’s so much mental energy; my day is occupied at least at some point by researching something online, or reading something to learn more about it. As a Science teacher, I am fascinated by the molecular processes occurring within my body, and want to learn about that as best as I can understand. I’m only at the beginning stages of my chemotherapy, so I’ll see how the rest of treatment goes.
Worse than my cancer story, the world is suffering amid the Covid-19 pandemic (in case you’ve been living under a rock). It’s heartbreaking how many people are dying. It’s tragic, and gives me perspective – even though I’m going through cancer, other people are dying from this virus; the gravity of the situation is far worse than my individual situation. I feel so sad for all those affected, and it reminds me to count my blessings.
Cancer threatens to take away all that I love and hold dear, and it makes me exceptionally appreciative for all that I have. While allowing myself to feel down or sad about having cancer is normal and healthy, the fighter in me is fiercely roaring, forcing my attention toward all that is on the up-and-up in the world, all that is positive. It’s got me thinking about all of the blessings I am so lucky to have in my life. I love my little life. Everything from my nightly Jeopardy! and Wheel of Fortune habit to the bike rides in the mountains I love so dearly; from the amazing people in my life, to the career I love. I feel like I have a new lease on life.
My gratitude is being recalibrated, sharpened in a new way – for my husband Ron, my cat Beau; my sweet family; my small but close circle of friends and acquaintances; my house in the beautiful mountains, living in a place I love.
Yes! These are all good things, and cancer doesn’t take them away. Even if cancer kills me, it doesn’t negate the good years I’ve lived and the memories I’ve made.
Ron asked me recently how I was really doing, fighting breast cancer amid the coronavirus pandemic. Without so much of a thought, I replied, “Honestly, okay. I have my you and Beau by my side, a beautiful home in the mountains, and food to eat. As a plus, we haven’t run out of toilet paper yet”. Simple truth in these times of shelter-in-place.
It’s true, though; I feel pretty amazing. Sometimes I feel a bit guilty for how happy I am, for how active I am able to be; for not suffering worse, for not having a harder time. It’s silly and futile of me to do so, and I remind myself quickly that it’s in my nature to make the best of the situation. We all have the ability within ourselves to adapt and make the most of a challenge, and right now, that’s what I’m trying to do. I don’t really feel guilty, of course, but I realize how much harder of a time I would be having if I were in this all alone.
People fight cancer without the help of loved ones everyday. I have the good grace of my husband living within the home. I am so blessed to have Ron helping me through this. He is my torch, my light, my breath of fresh air. His generosity, love, and acts of compassion have moved me. He has always been a gem of a human being, but now he is even more so my hero.
Ron & I, Natural Bridges
I’m finding so much grace lately, in places where I was once angry or discouraged, followed by a tunnel-vision focus on the foundation of such grace: gratitude.
Gratitude – a word that’s become trite, cliched, hackneyed to the nines, for good reason. Poetry, songs, self-help books, Instagram posts, and self-possessed gurus have gratitude permeating through their cores. It is one of the basic tenets for happiness, regardless, if not in spite of, possession or circumstance.
It’s something I thought I had a pretty strong handle on before being diagnosed with breast cancer. I’ve always felt like I’m making up for lost time, trying to squeeze as much into the day before the book is closed on me.
When I was diagnosed with cancer, I cried, of course, coming to terms with my total lack of control over the situation; I certainly did not feel gratitude. When I imagined my funeral – my ashes being scattered among loved ones in my favorite natural environs – like Kirkwood, the Santa Cruz Mountains, and the Pacific Ocean – I rued the thought of dying young, that is, before age eighty, because eighty is about the age I consider old. Moreover, lifespans are growing longer by the decade. That doesn’t guarantee we’ll all get there, though. I was quite angry about the prospect of cutting my life short, of losing the time I was owed to get older.
Owed? That’s where I was wrong. I’m not owed anything in life – not time, not love, not opportunity. Life is but a combination of attitude and circumstance, with gratitude at its fulcrum. Only we can find that balance, and we owe it to ourselves to achieve it, lest we live our lives stuck in a cat-and-mouse game between happiness and strife.
Though I’d thought I’d been living for years with a passionate appreciation for life and my blessings, I’m surprised by my calibration of gratitude. It’s growing daily. In the morning, the robins singing in the forest spark my curiosity for the day ahead. Though I’m not usually a morning-person, I find myself being pulled out of bed earlier than normal to stand witness to the glory unfolding outside my bedroom window, air thick with the dew of moisture blown in off the Pacific Ocean several miles away. Everyday I want to do as much as I can. I dance in my living room, play guitar to my favorite songs, and get moving outside.
Though I’m a pretty positive person by nature, I’m also a realist, and I don’t shy away from challenges, including tough feelings. I love learning all I can about everything, and using that knowledge to quell any such fears or misgivings. I’m not afraid to go there emotionally; to let myself experience the full gamut of feelings, from sadness to euphoria. I love giving myself to an experience fully and whole-heartedly. There is nothing inside my mind that scares me. I’ve felt so many different emotions during this experience, many of them uncomfortable and overwhelming, but I sat with them, and they passed along. That’s what emotions do; they don’t stay forever. We have the power to move them along at will, but there’s value in looking them in the eye, in sitting face-to-face with your fears and troubles. Better yet, it makes you feel relieved once you realize the bottom isn’t going to drop out on you just because you let yourself feel sad, or angry, or terrified. The human will to move forward ultimately prevails, and we focus again on positive, more helpful emotions, like gratitude.
A cancer diagnosis prompts you to look inward, and walk the winding paths of hypotheticals in your mind with aplomb and detachment; to consider each thought or what if for what it is, and then let it go. There is one feeling, though, that I find myself myopically focused on these days: gratitude. Its shade of grey may change from day to day, but it’s only grown stronger in the last couple of months.
I find blessings where I may have once dismissed them, too caught up in discomfort and unfamiliarity to notice their quiet heroism. I’m not one of those I’m so blessed! people who will bury their heads in the sand ignoring the hurricane above, but I am giving myself that mercy lately to feel that way, and to own it. Yes, I am blessed! It’s okay to acknowledge it, to state it out loud, to write it down, to shout it from the mountaintops, almighty.
It’s not just having a roof over my head and food to eat; it is having a roof over my head and food to eat. Those very basics are true blessings. Amid the struggling time we’re all living in right now, I feel exceptionally happy for these fundamentals. Climbing Maslow’s hierarchy of needs, I am thankful for a community of loving people, from near and far, who’ve rallied to support me during this time. There is nothing like the warmth of loved ones coming together to make your life easier. I have such admiration and respect for those who go it alone through the battle of cancer.
I am blessed I got my surgery when I did, on February 26, 2020, right before elective surgeries started being canceled due to Covid-19 restrictions in hospitals. I am blessed I had enough sick-leave accrued over my years of teaching to take a paid leave-of-absence, a testament to good planning and discipline on my part, and the stability of a government job. I am blessed with my job itself; I am blessed with the students I teach, the staff I work with, the community I live in.
Now I’m starting to sound like one of those I’m so blessed! people I bemoaned earlier, but cliche as it sounds, that’s how I’m starting to feel. That’s how a lot of people who are diagnosed with cancer say they end up feeling, too. When everything is at risk, you’re forced to reevaluate.
Perspective will give you a lot in life, or take a lot from you. It all depends upon how you see things. Knowing the world is suffering from coronavirus helps put my cancer in perspective; someone is fighting a harder battle, a worse prognosis, a more dire health issue. There is always someone or something that will be the comparative or superlative; whether better or best,healthier or healthiest, worse or worst, we all live on a spectrum of relativity. It’s up to us to calibrate ourselves on that scale; to find the data points we most align with, to dismiss outliers for what they are; to not demean our experiences through comparison, but make sense of them. We are never done with this work; there’s always room to grow. At the bottom of it all is a pure desire for human connection, and the digital age we live in fosters this community.
There’s plenty of awesomeness to go around in the world. We ought to encourage each other to be our best, to express our idiosyncratic beauty as fully as we can. We don’t know how much time we have to do so. I know now for sure that I don’t want to get to my deathbed and wish I’d lived more fully, that I’d expressed myself more. I don’t want to leave anything unsaid, any passion not explored.
Which leads me to the biggest blessing cancer has given me so far: the freedom to let go of having biological children. Chemotherapy drugs will all but destroy whatever potential I have. That choice has been finalized for me, and it feels like a big relief, actually. I have a strong maternal instinct, and there’s been times in my life that I wanted to have kids; however, I never really wanted it when it came down to brass tacks. And I made myself so wrong for that.
Like most childless women approaching forty, I’ve been peppered with questions and comments about whether or not I should have children; I’ve learned to not be too bothered by those. What’s tougher is my own insecurity – that I somehow believe so steadfastly in the construct that a woman’s purpose and ultimate value comes from her motherhood – and in the absence of fulfilling that action, I feel like I’m not good enough.
Though I’m confident with my life, I realize the areas where I don’t feel so. The fact that I’m not a mother, that I’ve never experienced childbirth, or watching my own child take its first steps, makes me feel inadequate on a certain level. It’s not something I dwell on daily, but I feel its pangs when I’m in the company of happy mothers, whose joy I’ll never know. There are other ways to experience motherhood, and I have a fierce maternal instinct, but having a biological child is something I won’t experience; it’s a club I’ll likely never be a part of. And I chose that, years ago, by my mid-twenties I knew.
I shelved that conviction for the odds of an accident, or a sudden change of heart, knowing as each year passed on, the chance declined like a biplane stalling in an airshow. I thought I should want children of our own; I thought I’d get the urge, baby fever. I’ve lived Summer to Summer for years, as a teacher, and a student, and with every one, I’d think, Maybe next Summer. I loved spending time with my nieces and nephews; we played, had fun, and explored. I loved teaching my seventh-grade students, with all of their energy and curiosity.
I’ve always loved kids. Babies? I love them, too, but I wasn’t always inclined to them. I admit I’ve probably changed less than ten diapers in my entire life. I used to babysit when I was a kid, but babies weren’t my forte. The first time I ever held a baby was in the climbing gym in Santa Cruz when I was twenty-one years old – yes, that old! A friend of mine had just had a baby, and a mutual friend of ours couldn’t believe I’d never held a baby before; he immediately made me hold that cutie-pie. I took right to holding him, but they laughed at how awkward I was. I’ve spent a lot more time with babies and children since then, but the need to have my own didn’t compel me to act upon it.
I love kids and babies because they’re people, after all, and I love people. For someone who loves people, I sure can be a bit of a loner. I can entertain myself endlessly, and I need time alone everyday to be happy. It’s not about excluding or avoiding others; rather, it’s about doing the things I love. Living under a shelter-in-place order has been pretty easy for me, though I miss my loved ones. We all live on a spectrum of introversion and extroversion. Sometimes that includes spending time with others, but much of the time, I’m riding solo – literally, on my bike. I’ve fought with the judgment of being selfish or self-centered for years; that someone who spends so much time doing what they want to do must be all about themselves.
I’ve struggled with feeling like people must think I’m so selfish, or self-absorbed, though I’d like to think I don’t care about their opinion. I try to justify myself to others, explaining that it’s not about spending time alone with myself, so much as it is spending time immersed in the activity I’m doing, and totally getting outside of myself; it’s really the opposite of being selfish or self-centered. I am completely present, rapt in the moment at hand, only focused on living that hobby, or sport, or meditative moment of solitude.
For someone who doesn’t have kids, and spends so much time alone, I feel like I have to defend myself; that people are judging me for being selfish. This is the concern that breast cancer is helping to kick. It really doesn’t matter if someone approves of my life choices or not; it only matters that I get to live another day to make my life’s choices. It doesn’t matter if I reproduce or not; it matters that I live a healthy life. You can’t live every life option in your life; you really can’t do it all, though we all like to try. I know I can’t have the life of the outdoorsy adventure girl and the stay-at-home mother married to her high-school sweetheart. I’ve spent so much time over the years feeling unsettled about the prospect of having kids, so much care about whether other people thought I was good enough, successful enough, woman enough to be a mother. It’s not something I was aware of all the time, but now that I’m at the end of the road for having kids, I feel the compounded effect of inadequacy. On the flipside, I feel an overwhelming sense of affirmation for my life, and the choices I’ve made.
Which is why I say:
Thank You, Breast Cancer.Thank you for affirming my life’s choice to not have kids. Thank you for affirming that I can spend my free time how I choose, enjoy time with my husband and cat, and start everyday with a blank slate I get to fill. Thank you, Breast Cancer, for affirming that I’m on the right path, that I will continue on for as long as Life will let me; that I can appreciate my simple days, living out my passions. Thank you for affirming I am happy with my life, and that I want more time to live it.
For all I am really trying for is more time to spend with my loved ones, more time to do the things I love. Chemo is part of this fight for more time, and I’m grateful these drugs exist to help people like me. It’s a good time to have breast cancer if there ever were one, though there remains so much room for advancement.
Nothing is perfect in life, and the same goes for my cancer. Although I can fall into the coulda-should-woulda trap, going over my life with a fine-toothed comb, trying desperately to glean some sort of explanation for why I would get breast cancer as a healthy thirty-nine year old, all that matters now is the present, so I try to keep my energy centered there.
I always felt like I was a person who lived with gratitude, with reverence for the beautiful landscapes we are so privileged to experience on this Earth – whether in the Santa Cruz Mountains of California, or Fort William in Scotland, or Whistler, Canada (the latter two are on my bucket list).
When I first got diagnosed, my patience had to adapt. Now, I feel my gratitude has adapted. I have grown protective of my life, even; it is so important to me that I will do everything I can to prolong it. I must be my own Mama-Bear, and give it all I’ve got. The next few months will challenge me further, but if I can keep my gratitude calibrated, I’ll keep my eye on the light at the end of the tunnel – no, not that light, but the light of the mercy of healing, the light of a new day … or maybe just the light of an awesome ride!
It’s nearly mid-April, and we are in the midst of a national shelter-in-place order as the most virulent coronavirus we’ve seen in years, COVID-19, is ravaging the world over, its unpredictable nature adding to the palpable fear of contracting it. People of all walks of life, of all ages and health, are succumbing by the thousands to the pervasive wrath of the virus, fighting for life on ventilators. Progress is quelled by setbacks, as those who seem to be improving are admitted into intensive care units mere days, or hours, later.
We are living through a global pandemic on a scale no one alive today has yet had to endure. We are being tested in ways that are obvious, and in subtler, more nuanced ways yet to be realized. As millions of people live in a varying state of lockdown around the world, we are only united in spirit, and the cybersphere, as social distancing mandates keep us mostly walled apart within our four walls. Parents are homeschooling children, adapting to distance learning on computers, missing the camaraderie of their peers. Gone are the moments of spontaneity and tangential inspiration that unfold so readily within the physical classroom, fostered by the shared purpose of students and teachers driven to keep learning, keep asking questions, and keep improving.
We all have a lot more time on our hands now that we are all but confined to our homes aside from essential activities, and exercise. Santa Cruz County has been on a shelter-in-place order since March 14, and the state of California issued a statewide order soon after. The economy is wobbling on a tight-rope, balanced in the tension of a trillion-dollar government aid deal soon to bring some financial relief to Americans and businesses, to the pitfalls of a marketplace with no customers to serve, no clients to meet. Far and wide, businesses deemed non-essential have been ordered to shutter, leaving them with the daunting challenge of keeping afloat when income streams have dried up, but bills are still due.
The effects on our economy will be felt for years to come, regardless of how the Dow Jones behaves on a daily basis. Volatility is the understatement of the time. We are insecure about everything from our retirement funds, to whether we’ll have food to eat. People are legitimately scared, and are forced apart at a time when most of us would want the comfort of friends and family. Though videochats and social media help bridge this void, nothing can replace the physical presence of flesh and blood, of a laugh heartily shared, a hug warmly shared.
We find ourselves reexamining our lives – our careers, our relationships, our goals, and our mortality. This pandemic makes everyone think about death, and our health. We wonder how we would respond if we got it; would we end up on a ventilator in the ICU, or be one of those asymptomatic types that barely ekes out a sneeze? What if someone we loved got it, and ended up in the hospital? What if they were to die? No matter how calm, cool, and collected you are, this crisis makes you think about these questions, if only for a moment, but hopefully not all day, everyday.
It’s a lot like being diagnosed with cancer. I’ve heard various interviews on talkshows lately where people talk about how they’re coping with the shelter-in-place orders, and they all might as well have been talking about being diagnosed with cancer. There are a multitude of parallels between the coronavirus pandemic and cancer.
First, they both make you think about death and your health. Eating habits, exercise, sleep, stress, and other lifestyle factors are meticulously combed through for deficiencies. Your life is put under a giant microscope. All that glistens, and all that cowers in the darkness, is brought to light. You think about your loved ones dying; how you would live without them. You think about all the things you should have done differently in your past, choices that may have led to your fate. You imagine yourself dying; how would it actually feel to take your last breath? Would you even know it when you did? Though I always knew I would die someday, being diagnosed with cancer made me reconsider death in a profoundly deeper, more intimate way. It was no longer something out there on the horizon; it was presenting itself to me in my thirty-ninth year of life, probably having grown slowly for years undetected.
Second, they both preoccupy your mind in a way you must learn to control. You are a slave to learning more about them; you just want to understand them, so you can fear them less. I spend hours reading through breast cancer articles, trying to better understand my situation, the NCBI website is one of my most-visited sites; I read blogs, I watch YouTube videos. There’s a lot of mental energy that goes into just trying to figure it all out, and as someone who is passionate about Science as it is, it makes the thirst for knowledge insatiable.
Then, there are all of the COVID-19 stories happening worldwide. They demand your attention, and everyone I know is following the news constantly. It is important to be informed. I read the newspaper daily, and watch the news in short bursts. If one watches the news endlessly right now, fed by a relentless torrent of heartbreaking stories, day after day, it isn’t necessarily good for our mental health.
It’s the same with cancer: while I invest hours upon hours researching my cancer, I have to know when to take a break. If I spend too long consumed in the tunnel of statistics, prognoses, and web of possible culprits for my cancer, it wipes me out; I’ll feel exhausted, anxious, and discouraged. It took me some time to learn how to regulate that need for learning, to realize that the knowledge wasn’t going away, that I could still find it the next day on the Internet or book I was reading; I’m still working on it. Stepping away and doing something completely different – a distraction – was exactly what was needed, and that’s what I hear a lot of people talking about today. Just trying to stay busy, stay distracted, is what I said often after my mastectomy. Now, I hear people saying the same thing with the shelter-in-place order; they are just trying to stay busy, to keep their mind off the gravity of the situation. Cancer or coronavirus, we all need a break from the constant onslaught of news updates, alerts on our phones, and the state of alert we are all living in.
Ron & Rainbow
RD + KD
The third way cancer and coronavirus are similar is how they command you to deepen your gratitude. When I first was diagnosed with breast cancer on February 3, 2020, a roller-coaster of emotions began, but I remember distinctly thinking: I’ve been living my life healthily; I’ve been appreciating everyday, living like it could be the last. Darn it, I haven’t taken my life for granted! I don’t need this lesson!
I knew as soon as I thought it how inane it actually was. Of course I had room to grow more grateful, to appreciate more deeply. Of course I wasn’t done in that regard; there will always be more room to show more grace for my blessings. Now, just barely over two months later, I feel I’ve already stretched my seams in the gratitude realm. I look forward to time with my husband and cat, moseying around the garden; I delight in the sight of birds bathing in the birdbaths. I relish my time in nature, and the amazing creatures I find, from lizards to bobcats to coyotes. I feel incredibly grateful for my loved ones. It helps that I’ve had so much time off work to dive deeper into celebrating the little things in life, being on-leave since February 14, which leads me to another similarity between coronavirus and cancer: the shelter-in-place order.
We all have more time to ponder our lives, to reflect in ways perhaps not regularly done so. No two people will handle a cancer diagnosis precisely the same, and no two people will handle a COVID-19 diagnosis quite the same way, though there are undoubtedly more similarities than differences. One of the main things we all will do is reflect upon our lives – our happiness, our chosen careers, our life choices. It gives one pause, and suddenly everything is open to scrutiny.
The world on an all but lockdown amid a pandemic? That will make everyone take notice – to not just their own lives, but the state of the planet. I hope everyone will give credence to the drop in pollution levels during this time. The grounding of airplanes, cars not commuting to work, factories shuttered – there is a marked drop in global pollution as a direct result of this pandemic. Stephen Kessler said it best in his editorial, that perhaps this would be the catalyst to really bring change to remedy the climate crisis. It is imperative that we as a society adopt cleaner technologies, and work to restore natural ecosystems; to protect endangered species; to stop using forever chemicals; to realize that overpopulation is a key factor in our problems. We are making some progress on environmental initiatives, but nowhere near as far as we should be by now. It makes me so angry that I learned about the greenhouse effect as an eleven-year old; we learned about the ozone hole, and CFC’s. The message was clear then, as it had been for years before: pollute the Earth, and we will hurt. Now, as a seventh grade-Science teacher, I am teaching my students a similar story, with much worse stakes, much worse outcomes. It is confounding how the profits of corporations and private interests can supersede the health of our planet for so many years.
While the coronavirus stay-at-home orders will spark self-reflection about that which we are unsettled or unhappy about, it will also be the catalyst for creative self-expression. We reassess our lives, and we also reacquaint ourselves with lost hobbies, passions, and artistic outlets. When you have lots of time on your hands, your truest instincts and desires will surface loud and clear; even if you thought you’ve heard them already, they will roar stoically, echoing across the canyon walls of your psyche. This is a wonderful time for music making, writing, reading, cooking, cleaning, organizing, gardening, and taking good care of yourself. It is an opportunity to dive into our hobbies, even if only in between catching up on the news.
It is also a good time to connect with our most authentic emotions. One of the things I struggled with in my cancer diagnosis was anger. Though I felt sadness, fear, and tinges of hope here and there, I was sidelined by anger for anything I was upset about in my life – the state of the environment, my neighbor’s white smoke spewing toxic pollution, the fact that I had Stage 2 breast cancer.
I was really angry about that one, especially that I hadn’t found it sooner. I’d done mammograms and ultrasounds for years, checked myself regularly for new lumps, ate well, exercised a lot – you already know the spiel. When I was told at my last appointment, at the end of 2016, that I only had fibroadenomas, and didn’t need to worry; that with no breast cancer history in my family, I could come back at age forty for my next mammogram, unless I felt any changes in the meantime, I let go of the rope. I stopped worrying about the lumps in my breasts. They didn’t change, and for whatever reason, I never felt my cancerous tumor until it was quite sizeable. I remember feeling it, mid-December 2019, and it felt like a peach pit, a few centimeters at most, maybe. By the time it was excised during my mastectomy late February 2020, it was 4.4 cm. It matched the statistics I’d read about doubling size, that tumors could double from every 50 to 200 days, a wide range, but an estimate. It had likely been growing for years, and for whatever reason, I didn’t feel it, or it didn’t show up as an abnormality on my previous scans.
I wished I’d gone in for an ultrasound over the last three years, instead of trusting that I didn’t need to worry. I wish I’d felt something sooner. I can’t explain how angry it has made me, for how on top of my health I’ve always been; I’ve always taken really good care of myself, and it baffled me that I could let this slip. I had struggled with occasional bouts of fatigue, headache, and nausea over the last couple of years, and seen my doctor about it. I even wrote about it in my journal. Bloodwork was normal, and they thought my sleep apnea was contributing to it. I had already tried a CPAP machine to no avail, and ended up trying a mouthguard, or mandibular advancement device. I couldn’t get used to that either, as it aggravated my jaw painfully. I knew something was off, but I thought it was just not eating well enough and overexerting myself, compounded by a poor night’s sleep from my apnea.
I go over all of the things I could have done differently; I could have asked for an ultrasound just in case. It makes me so angry. All that energy is wasted, though, since I can do nothing to change it now; moreover, blaming myself isn’t helpful. That’s the mystery of cancer; most people don’t get a clear culprit for their diagnosis.
I also felt angry that I didn’t feel more self-actualized in my life – that, after all I’d done with my life thus far, after all the happiness and passion, the times I’d felt like I was really stoked on how life was going, I still didn’t feel like I’d made it; that I didn’t feel fully seen or heard, or entirely successful. Part of it was financial. Sure, I’d like to be making more money, but mostly, it was existential; it brought into focus how much more I still wanted to do with my life, how much sharper I wanted to hone my mastery. Now, as millions of people find themselves with the boon, or burden, of too much time on their hands, we all share a unique opportunity for self-reflection, granted, of course, that we are lucky enough not to fall ill with COVID-19.
The fifth similarity is the loss of control, and the anxiety that accompanies the uncertainty of the time we live in. A cancer diagnosis reminds you that despite your best efforts – healthy diet, exercise, and low-stress – we can’t control life; we can’t protect ourselves from every threat, no matter how hard we try. We are living in anxious times, worrying about our health and that of our loved ones, but we are also worried sick about the future. How many business owners will still have a viable business to return to? How many dreams of investing in a new business will be shelved indefinitely, victims of the slow build-up of the working man’s acquisition of savings, every penny one can spare after feeding and housing oneself? How many will be forced to work in another field altogether, trading a sense of purpose for a sense of sustenance? How many lives will be forever altered? Ultimately, how many lives will be forever changed by the loss of a loved one? How many lives will be lost, last breaths taken in crowded hospital wards, beds soon replaced with the next victim? It is staggering to think about the loss of life. It is also unsettling and worry inducing.
We are reminded, again, that there are catastrophes whose scopes of damage know no boundaries. We are reminded of our vulnerability. Our economies, our infrastructure, all the structures we depend upon for our lives are on shaky ground. We must adapt to live, at least temporarily, without them. We are pushed to the edge of our comfort zones, no Vanilla Lattes to ease the sour aftertaste of a world gone awry.
We must learn to be okay, on a certain level, with this loss of control, with this humbling recalibration of humankind. As cancer patients, this loss of control is compounded by changes in our treatment schedules, delays, and the risk of falling ill with a weakened immune system. We are at the mercy of a triage health-care approach, where things are changing on a minute-by-minute basis. Delays and hiccups are the nature of the game at this point, coronavirus, cancer, or both. We walk along with our dream legs, hoping to near a rewarding horizon of relief. The horizon sometimes moves, though, and we have no control over it. We must learn to focus on what we can control – ourselves – instead. It isn’t easy to do, especially when your life depends on it. Our patience is tested in a myriad of ways.
I knew I would have dream legs moving along with my chemotherapy treatment, that my patience would need to adapt. On Monday, March 30, I went in for my first infusion at Kaiser San Jose. My sweet husband Ron drove me, and when I showed up my Dad was waiting in the parking lot! It was such a pleasant surprise to see him, and made me cry happy tears immediately. Though we couldn’t give each other a hug, it meant the world to me to share a few quick words before I continued on for my appointment. The love and sweetness continued when Ron dropped me off at the infusion clinic; he unzipped his sweater to reveal one of my favorite shirts: I Love My Smokin’ Hot Wife. He wears this shirt on occasion, but this time was just perfect. We embraced in a warm hug and off I went.
That’s another similarity between cancer and coronavirus: it brings people together, even if we are physically alone. The amount of love I’ve received from the virtual realm – emails, social media comments and messages, videochats – all help me feel supported and connected. People have sent gifts, money, and cards, all of which made a huge difference for me. The staff and teachers at my school collected a generous sum of money for me, which moved my heart. Though I often talk about what an introvert I am, we are all a blend of extroversion and introversion; few of us are solely one or the other. We are a shade of grey. I love time alone, but I love the people in my life, too! I am so grateful for the love and support I’ve received, it’s almost overwhelming. We all need each other right now; we are all feeling vulnerable amid the coronachaos. It warms my heart how much people are stepping up for each other. Nightly cheers for healthcare workers have been incredible to see, from singing Italians, to pots and pans banging New Yorkers, to our own local Eight O’Clock Howl in the San Lorenzo Valley. We even made the newspaper! It’s been a real treat each night to go out and howl with so many others, our valley echoing our calls in symphonic unison. You can feel the heart in everyone’s voices.
Walking into my first scheduled chemo infusion, I definitely was feeling the love all around. I was ready. Seeing my dad and Ron before really helped calm me. As I entered the building, there were two COVID-19 screeners at the door. I’d had a hint of a cough over the last couple of days, nothing strong, so I promptly let them know. Though I didn’t feel sick, I wanted to be honest. I could be one of those mildly symptomatic people, after all.
I donned a mask, and waited for a nurse to come take my temperature, only 98.5, for someone who usually runs about 97.9. After some time, she said they were delaying my infusion in case I was sick. At first, I was selfishly disappointed; I’d been so nervous about the appointment, it had taken a lot out of me. I just wanted to get it over with, and that wasn’t possible anymore. I left the building and started crying as I walked toward the parking lot to meet up with my father. I called my sisters Mary and Bonnie, and vented my frustrations; they kindly comforted me. I was fortunate to spend a half hour talking with my father in the parking lot, from six feet apart, until Ron came to pick me up. Of course it was normal to feel some disappointment, but I understood the severity of the situation, that all precautions must be taken. There was no point in risking nurses’ lives, or other chemo patients’ lives, if I was sick. They sent me back home, and told me to come back in a week on Monday, April 6.
I quickly got over the let-down of the delay, and took it as a Bonus Week! I had a gift of another week to live my life chemo-free, and more importantly, to recover from my port implant surgery. I’d had the port implanted on Wednesday, March 25, under twilight anesthesia. They implanted a PowerPort into my right chest, connecting a catheter tube to my jugular vein in my neck. It didn’t hurt while it was being put in, but that night, I felt like I might’ve been shot (this coming from someone who has no idea what it feels like to be shot). My entire right chest, neck, and shoulder were just frozen and throbbing at the implant site. I couldn’t even lift my right hand to read a book, or make a cup with my hands under the sink while brushing my teeth. It was worse than the post-mastectomy pain, although I’d had some pain medication to help with that. This time, I didn’t want to take any pain pills; after my withdrawal from the gabapentin, I didn’t want to feel that way again. And, the anesthesia had already damaged my liver and body enough, so I didn’t want to add anything into the mix. It was really tough, though; for a good three days after surgery, it constantly hurt. My mobility was limited, and I could barely turn my head to look right or left. The mastectomy had been a huge hurdle, but I’d gotten over it and was feeling stronger by the day. Then this port comes along and takes me two-steps back, and sucker-punches me with pain worse than the mastectomy.
I was so grateful to have an extra week to heal up from the port implant, and more importantly, have some fun! We are lucky to live in a beautiful mountain near the beach community, where there are plenty of trails and beaches to spread out upon. We were able to go mountain biking a few times, go to the beach, and only saw a few people quickly in passing. The weather was nice and sunny; I laid out in the backyard, soaking up the relaxing rays of the sun.
Old-Growth Redwoods & My Bike
Alligator Lizard in the Garden
I felt myself truly let go for the first time in weeks. I needed this extra time to heal up; to just get stronger, and feel like myself again. I wasn’t sore from my port implant anymore, and it felt wonderful to get outside and move! My husband and I had a fantastic week together – a Bonus Week – and it really buoyed my spirits.
The rain came in on Saturday the 4th. An oncology nurse telephoned to ask how I was doing, and whether I still had a cough. I reported that the cough had persisted throughout the week, but never worsened to the point of being productive or constrictive. I had no other symptoms – no runny nose, no signs of fever, no body aches – and added that I felt better as the week went on, just had a mild cough. She said they’d call me Monday morning to let me know if they wanted me to be tested. On Monday, April 6, they called and said I’d have a phone appointment with my doctor later that day. After the phone appointment, I was sent to the Scotts Valley Kaiser drive-up testing site.
I felt so badly, and so grateful, for the two nurses manning the testing station, wearing face-shields, masks, gloves, aprons, and other PPE I may not have noticed. They were not taking any chances. I waited for them to tell me to roll down my car window, and the nurse said she’d do a throat swab followed by a nasal swab. I pulled down my mask, taking a deep scratch to the back of the throat. The nasal swab that ensued was quite uncomfortable – it felt like a swab had been pushed up into my brain. My eyes immediately started watering, and I felt as if I had water up my nose. I rolled up the window, and pulled away, feeling a bit shocked by how painful the test had been. It was not a pleasant experience! My nose felt like it was being tickled the rest of the day. I was told I’d get my results within a day, and went back home.
Post Nasal (Brain) Swab for COVID-19 Test
My oncologist had told me they like to start chemo no later than six weeks after surgery; for me, that six-week mark was Wednesday, April 8. I’d hoped to start on March 30, but all precautions must be taken, and I understand the delay. That’s exactly what I’d written about in my last post, so I wasn’t too surprised. I’ve heard stories of other cancer patient’s treatments being delayed, too, and knew it could be worse.
I got my test result back on Tuesday, April 7, and it was negative – phew! Part of me wished I’d never said anything when they asked if I had a cough, because after all, it wasn’t anything serious, and ended up delaying my treatment, but honesty is always the best policy.
They suggested Monday, April 13, as my first infusion, but I asked for something sooner. They had Friday, April 10, at 10 a.m.; Good Friday. I took it. Until that needle was in my port, though, I wouldn’t believe it. Too much hype and delay. I enjoyed a beautiful Pink Supermoon on April 8, an apt moon for me.
Pink Super Moon
Sunset, Santa Cruz Mountains
The day came, finally. I felt ready; I was calm, even. Ron dropped me off, and off I went. I started with thirty-minutes of wearing my Paxman Cold Cap, which gives me about a 50/50 chance of saving, to some degree, my hair. If it’ll work, I’ll try it! It felt cold, but not uncomfortable. I was in a side-room off of the main infusion room, where there were about fifteen other patients receiving infusions. The chair was comfy, and it was nice to have my own space.
The nurse gave me three pre-medications: Zofran, steroid pills, and Zyprexa. A pharmacist was there to consult with me about the purpose and side-effects of each; Zofran and Zyprexa were antiemetics, or antinausea, medicines; drowsiness was the main side-effect. I was surprised to learn that Zofran was an antipsychotic, but is prescribed for nausea in chemotherapy patients as well. I’ll take Zofran twice a day for three days following chemo, and Zyprexa once a day, at night. Zyprexa is a serotonin-5-HT3 receptor antagonist, meaning it works to block serotonin from activating my gastrointestinal nerve, which is triggered by the chemotherapy drugs, Adriamycin and Procytox. I’d also have to give myself a shot in my stomach, Zarxio, once a day, for seven days, starting on Day 3 of chemo (Sunday, for me). It will stimulate white-blood cell production in my bone marrow, bringing a side-effect of bone pain; for whatever reason, Claritin, your basic, over-the-counter antihistamine, is known to help with this. For how much I don’t like to take pills, it’s a lot for me to submit to all of these medications, but if they’ll help me to live a longer, healthier life, I don’t see it so much as a choice, but a necessary step toward healing. May they work effectively!
My oncologist also came in to meet with me, which was comforting. She explained that she had a new idea for my Taxol administration; initially, it was to be a 12-week cycle, given once a week, that was to be given after the first four rounds of Adriamycin and Procytox, given a two-week intervals. She explained that they would try doubling the dose of Taxol, and give it to me at two-week intervals, instead of weekly. This would allow me to finish chemo four weeks sooner, which was good news to me; that’s finishing on Friday, August 1, instead of Friday, August 28, the first Friday of my first week back at school, presuming I’m ready to go back then. It would also mean I’d have to continue doing the shots in my stomach, but I was okay with that as long as my body will tolerate it. We’ll have to wait and see, but hopefully I can finish on this shorter regimen – 16 weeks instead of a 20-week cycle.
The infusions began next; the fluid was bright red, hence the nickname The Red Devil. It is also called that because red sores are common on the palms and feet, as well as hand-foot syndrome. It is red from the bacteria Streptomyces peucetius, from which the drug is derived. As frightening as some of these drugs are, I can’t fight my curiosity about them; it is interesting to learn about them, to the extent that someone who’s not a doctor can. Science is endlessly fascinating and intriguing.
Both administrations took about twenty-five minutes, given slowly by the nurse into my chest port. It didn’t hurt having the port accessed, probably thanks to the lidocaine cream I put on an hour before. After the nurse had administered both drugs, I sat about twenty more minutes with a saline injection circulating through my port. I sucked and chewed ice the whole time, in an effort to reduce mouth sores. I didn’t have a strange taste in my mouth, though I’ve heard of it happening. I didn’t feel nauseous either, which was a relief. The nurse removed my port, and congratulated me on finishing my first round.
Then, it was ninety more minutes of the cold-cap. I sat there reading my book, The Last Black Unicorn, by Tiffany Haddish. It was a great, fun way to pass the time of my first infusion. She is one of the funniest women!
I was finally done, and took off my cold-cap. Ron picked me up outside, and we went back home. I ate some lunch, and then took a nap for about three hours; I was exhausted. I felt okay, and went to bed around midnight.
When I woke up the next morning, I was super thirsty and drank a bunch of water; I also took my Zofran pill. I immediately threw everything up. I went back to bed for a few more hours, and awoke around noon. I felt not only better, but energized. It must’ve been the steroids from the day before, because I was charged. I spent the day pruning and gardening, doing laundry, cleaning, and getting a lot done. I’d heard Day 3 was hardest for most people, and for me, that’s tomorrow, Sunday, April 12, Easter Sunday. We’ll see how I feel then, but here on Day 2, things are going okay.
It’s scary starting chemo at a time when you need your immune system at its strongest, when the coronavirus looms as a risk, but I am looking forward to making progress. I feel quite relieved now that chemo has begun, especially that it’ll be a 16-week cycle instead of 20-weeks.
It’s coming at an apropos time, when we are forced into social distancing; right now, surfing is banned along the entire Santa Cruz County coastline! You’d think it were an April Fool’s joke, but no, it’s true. Beaches are closed, all parks and trails are closed, even the West Cliff Drive footpath is closed. It’s a one-week closure, aimed at deterring tourists from visiting over the usually popular Easter weekend. Though I’m bummed I can’t legally go for a mountain bike ride right now, at least I can go for a run from my house. I live in a beautiful neighborhood, and luckily the streets are still open.
Like everyone these days, I’m looking forward to life returning to some semblance of normal. I’m looking forward to simple days built on simple things, with a healthy body. I’m looking forward to seeing my family and friends again, to sharing time together in a way that Skype or Facetime could never replace. I’m looking forward to living my life, free of cancer, free of coronavirus, free of the shelter-in-place order that holds us in this limbo of self-reflection and self-expression.
I wrote about wanting to feel seen and heard when I was first diagnosed, but now, I just want to see my own reflection, to hear my own echo; that’s enough for me. I want to see myself on the other side of breast cancer, healthy and strong, my voice empowered, not defeated, by the vicissitude of cancer. If I can survive this in good health and see myself through, that’s all I need now. I don’t need any accolades, recognition, or compliments of others anymore than I need my appendix; with or without them, life goes on. I only need my good health, and the rest will follow. May I be blessed with such grace in the years ahead, as survival rates are only protracted over the long-term. Much of what I’ve been reading lately has only confirmed that my survival rate is lower than average, and my recurrence rate is higher. There are a multitude of factors that go into determining the virility of a woman’s breast cancer: age at diagnosis, size of tumor, histologic grade of tumor (Nottingham score), whether the tumor is hormone sensitive to estrogen and progesterone, genetic factors such as the BRCA-1 and 2 genes, family history, and whether the cancer has metastasized to other body parts such as the lymph nodes. Young age is typically associated with more aggressive cancers and worse prognosis. The more lymph nodes the cancer has spread to, the worse the long-term outlook. The higher the Nottingham grade score, the worse the prognosis; my tumor was 9/9, with three positive nodes. It’s a complex web of factors, but in my case, everything I keep reading doesn’t give me a lot of hope.
I feel like I am fighting for more time. Everything I’m doing for treatment now is for the chance to have more time on this Earth. The chemo, the radiation I will undergo, despite my fears of its collateral damage, is part of my attack plan. The goal is to throw everything I can at it now, in the hopes that it’ll quash my cancer, to make whatever leftover cells not excised from my mastectomy and lymphadenectomy dormant.
Like any other cancer survivor, should I respond well to treatment, I will have to live the rest of my life looking out for collateral damage from my treatment now – the risks of lymphedema, lung-cancer, heart damage, leukemia, and a recurrence of breast cancer that would be a death sentence. Though women are living years with metastatic breast cancer, there remains no cure for it. It is a balance of palliative care and extending life. I fear I will be one of those women whose cancer comes back, who dies at a relatively young age as a result, but none of that worry is helpful right now, so I try to let it go.
Which leads me to yet another similarity between the coronavirus and cancer: it has changed everyone’s lives forever. Nothing will ever be exactly the same after this. We will all look back at this time with heavy reverence. There will be a time when we can look back and remember what it was like when we were at home, or when we had it but persevered; we’ll remember a loved one who fell ill, and either got better, or died. Bless the thousands of lives lost from this virus. I will always live with the risk of a recurrence of cancer, but the world too will live with a risk of recurrence, of a similar pandemic crippling our societies. We will all live with the consequences of this time for years to come. We will live with its shadow for years. We will carry on ahead, lessons learned from the past, but no sense of what the future may hold. Such is the dynamic, changing nature of life.
Alligator Lizard in the Garden
It’s extra crazy to have cancer during this coronavirus pandemic, but the magnitude of the pandemic overshadows my individual struggle. The world is suffering, and that pain is greater than my own. It gives me perspective, and makes my challenge not seem so ominous. It reminds me that life is unpredictable – cancer or coronavirus – and nothing is guaranteed.
What’s really helped me cope with everything has been pretty simple: hiking and riding my bike in Nature, reading, enjoying my hobbies, yoga, playing and listening to music, and, most of all, the good grace of a loving husband whom I am eternally grateful for. I really don’t think I’d be doing as well without him; if I were all alone, I think it’d be harder. I know women do it, and do it with strength, but I can’t imagine doing this without my husband, especially now that people can’t come visit me anyway.
I think everyone is appreciating their loved ones, their cherished hobbies, their time to do what they love. There are tons of podcasts, TV shows, and movies to escape into as well. I’ve been playing my guitar a lot, rocking out to Ozzy Osbourne’s No More Tears, one of my anthem songs for breast cancer. I’ve been dancing around the living room to my favorite hip-hop songs. We all need an outlet, especially in challenging times. Distraction is the word of the moment, but it’s more than distraction; it’s adaptation, it’s survival. We must adapt to the reality we are in, and find ways to nurture ourselves through this time. We must keep ourselves as happy as we can be.
Our Awesome Cat Beau
May we all come out stronger on the other side; smarter, sharper, clearer in our convictions. May we all come out alive and healthy. May we all come out to see each other’s smiling faces on the other side.
In the meantime, may we all make the most of the situation; may we show gratitude and reverence for life’s daily gifts. The world remains beautiful, stoically persisting despite the darkest hours of our lives. May we all find serenity in the simple things, from coffee in the morning, to a shared laugh with a loved one; with the shared bond of sheltering in place amid a global pandemic. Though miles apart, we are united in spirit, and we have so much more in common than our differences.
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…
Tom Petty sang it best: The waiting is the hardest part.
I’m a pretty patient person, generally speaking. I once spent ten hours perched high up in a Douglas Fir tree for a college assignment; I spent the night on a mountain bike trail in Downieville without water; I waited nine years to marry my husband Ron. I know I have no control over time, or other’s schedules, and am happy to let life’s timeline unfold at its own pace. We all grow more adapted to being patient as life throws unexpected challenges at us over the years, more accepting of that which we cannot control.
Some things test your patience more than others, though. Cancer is one of those things.
It’s been over a month since my life changed forever. At thirty-nine years old, I was diagnosed with breast cancer. That initial coping period was quite intense, but it quickly showed me how crucial patience would be throughout this whole process. It also reminded me how quickly human beings adapt: we accept the news, we feel all kinds of emotions about it, and then we move ahead as best we can.
Waiting for my surgery date, for example, was a test of patience. I did not know when my big day would be, only that it was super important, and intimidating. I let my breast care coordinator know I was ready to schedule my appointment, and was told I would be contacted by the scheduler for my appointment sometime during the week. I went about my life as best I could. The weather was nice, so I rode my bike everyday, went to the beach for sunset, and enjoyed that time with my husband. I was okay with waiting a few more days for surgery, until Saturday evening 2/22, when I suddenly felt anxious knowing I had this tumor in me with no end in sight, no scheduled surgery date on the calendar. I sent a message to my doctors to make myself feel better, reiterating that I was getting a little bit antsy to get in for surgery. I’ve never experienced such anxiety before, but my good old bike proved therapeutic once again. The minute my two wheels rotated, I felt immediate relief. Nature is powerful medicine, and so is mountain biking.
A few days later, on Tuesday, I was contacted by the scheduler; she wanted to know how much notice I needed, and could I be ready tomorrow, even. I said yes, and she said she’d call me back later that day. About an hour later, she called back and said I was scheduled for the next day.
I’d read books, blogs, and articles; I’d watched other women’s YouTube videos about mastectomies, and looked at pictures online. I felt as ready as I could be for the surgery. In fact, I was oddly looking forward to it. I was getting on the path to treatment, and was ready to board that train. I’d had enough time to become inured to my new reality, and the gravity of what lay ahead. Two books in particular really helped me prepare: Dr. Susan Love’s Breast Book, and Anticancer: A New Way of Life, by David Servan-Schreiber. Thank you to my older sister Bonnie for the Susan Love book, and my Auntie Christie for Anticancer. Both books were instrumental in helping me prepare, and I learned so much from them.
The eve of any sort of big event usually evokes strong emotions and poignance; the day before you get a double-mastectomy evokes an unusual sense of meaning. This was my last day with my breasts. I went for my last ride with my real breasts, the boobs I’d known since adolescence. Ron and I had a great day together, an excellent dinner at our favorite restaurant in Santa Cruz, Chocolate, and finished off the evening with a magnificent hot tub. I felt as ready as I could be.
I awoke the next morning on Wednesday, February 26 – Ash Wednesday, coincidentally. I’m not religious, but I did find the timing amusing. Ron and I left the house at 5:15 a.m. for Kaiser San Jose. We got checked in, and within minutes I was led back to the pre-operating room. I changed into my gown, and laid down on a rather comfortable hospital bed, complete with a hot-air fan that warmed me up like a fireplace. I felt cozy; I was also tired, having stayed up until 2 a.m. the night before.
The three surgeons came in to see me before surgery, which was comforting. Though I’d met them before, there was something calming about seeing them before being in the operating room. The anesthesiologist checked in with me, too, and the nurses were caring and attentive. I felt like I was in good hands.
By about 7 a.m. I was wheeled into the operating room, which was freezing cold. I understand why, but it was such a change from my hot-air blanket in the pre-op room! The surgeons and nurses began doing their security checks, as the anesthesiologist explained to me, which is where they state who they are, who the patient is, and exactly what they will be doing. Of course, this has been reviewed many times before surgery, but it’s the final clearance; the final check of the airplane before take-off, so to speak. As I lay there listening to my surgeon take her turn, stating her name, my name, and that she would be performing a bilateral mastectomy, the anesthesiologist gently said:
I’m going to give you something to send you off to Hawaii now, okay?
Within seconds, I was out.
The next thing I remember, I was in the recovery room. I scanned the room and knew I was out of the OR; surgery was done. The anesthesia? Not so much. I was really sedated, and quickly fell back asleep for awhile. The nurses checked on me a few times, and said I would be able to go home that day. The doctors had told me I’d be spending at least one night in the hospital, so this was music to my ears. I got to go home and sleep in my own bed, see my cat Beau, and be in the comfort of my own home – and avoid Coronavirus exposure at the hospital, perhaps. This was a great way to wake up from surgery!
Next, I awoke to a beautiful sound – Ron softly crying, sitting next to me, his hand on my forearm since the IV was in the back of my hand. He said he was so happy to see me; that surgery was over, and everything went well. I’d been under about five hours. I lay there another forty-five minutes or so, sleeping peacefully, before I asked to get up and use the restroom.
They had warned me my urine would be blue from the dye they injected. The plastic surgeon who specializes in this technique explained it would help him trace the lymphatic fluid after they removed my lymph nodes, possibly divert that flow, and may reduce my odds of developing lymphedema after surgery. Lymphedema is a life-long condition involving swelling, heaviness, and tingling; once you get it, you’ll have to manage its symptoms for life. There are many stretches I learned in the lymphedema clinic I went to before surgery, but with my axillary lymph nodes removed on my left armpit, my risk of developing it increases.
I peed blue, as expected, but what shocked me next was my body temperature. I was feverishly hot all of the sudden – sweaty, feeling as if I were in a sauna. Exiting the restroom, I told the nurse, who promptly sat me in a wheelchair. That hot-air fan used to warm me up before surgery was now directed at my face, but switched to air-conditioning. It felt amazing. She put an ice-pack on my head and back of my neck, and within a few minutes I was cooling off. I guess it’s a precursor to the hot flashes I’ll likely develop from Tamoxifen, which I’ll have to take for at least five years after chemotherapy.
Ron’s father, Ron Sr., and his wife Cindy came up to the hospital to see me, which was really nice of them. Ron drove me back home, and I pretty much slept the rest of the day, waking up for a short dinner before returning to bed.
The next morning, I felt hungover from the anesthesia. I threw up, which was awful. I felt terrible – headache, nauseous, sore, and like my chest was going to explode. I had immediate reconstruction with expanders put in, and they were certainly doing their intended purpose, stretching me out like a balloon. The reward for that was keeping my nipples, which made me cry. I didn’t realize just how much they meant to me until I saw they were still there. The plastic surgeon had explained that they weren’t sure they could save them, but hallelujah, they were still there. I felt more like myself; I still looked like myself, sort of. The expanders were filled with air, so I even looked like I had boobs, or foobs, even though they were awkward-looking and had clearly been through the ringer. While I knew they were no longer my real breasts, it definitely helped with the transition to see something there when I looked down! The nipples were the icing on the cake, even though they could still have to be removed down the road.
The drains take some getting used to, though. One on each side, a plastic tube drains fluid into a silicone bulb that you must empty and clean daily. You can’t take a full shower or get your bandages wet at all. You have to milk them to clear clogs. I had read about them and how annoying they were; how women couldn’t wait for the day they got them out. Looking down on these new drains attached to my body, I realized I would be in a sort of Body Jail for the bulk of the next two weeks, tied to them like a leash. I could be bummed about it, grossed out, and claustrophobic that these things were married to me day and night. Or, I could distract myself by focusing outward on the amazing world going on all around me. Though I knew I had a long journey ahead, I resolved that I would keep myself busy so as not to focus on the drains too much.
First, I had to get over the anesthesia. I spent the day mostly sleeping and fighting nausea; Ron’s dad and Cindy came over for a short visit after picking up my post-mastectomy camisoles from Nordstrom in San Jose. Family is so awesome! I wasn’t in too much pain; I just felt hungover. There was persistent tightness and pressure in my chest, though.
The second day after surgery, Friday, February 28, I woke up early. I was charged and ready to go; lying around for two days straight had me feeling over-rested. My dad came down to visit me, and I decided I needed to go outside for a walk. We walked up the lane behind my house, a quiet street lined with redwood trees, and a slope that stretches the calves like a gravity-stretch. We were rewarded with an expansive mountain view at the top, and it felt so good to be moving again. My breasts were gone, but my two feet were still propelling me forward; my body was still working! I felt inspired.
I had a great day with my dad, and then my wonderful mom came down to cook me dinner. She stayed the night and brought a whole bunch of goodies with her. While there may be many people who nurture us in life, there is simply nothing quite like the tender loving care of your parents. I am so grateful for the love of family and friends right now.
That weekend, I increased my walking each day. I went for a magical hike in the redwood forest by my house in the Santa Cruz Mountains; I relished the warm sunshine of a nascent Spring, enjoying the early bursts of wildflowers that blanketed the hillside. It was beautiful outside, and my surgery hadn’t changed that.
At Home in the Redwoods
Keep Looking Up
Day After Mastectomy
I’ve always looked to nature for an escape, a playground, a quasi-church, as therapy. It is so healing to be outside, whether in my garden, or on a trail. Knowing I was limited in what I could do, I committed to hiking as much as I could each day. I kept my lymphedema exercises and stretches going, too; I elevated my left arm after long walks. I did light yoga, and plenty of namaste, a perfect pose for my arms right now. I didn’t want to push myself too hard, but I also knew exercise was good for me. I’ve spent my life exercising pretty much daily, so sitting around inside wasn’t going to do it for me, although I surely enjoyed my evenings relaxing with a good book, or a good TV show for levity. I needed to go outside, whether reading a book on the chaise-lounge in my garden, or walking on the trail.
Post-Mastectomy Camisole With Drain Holders
Pacific Hound’s Tongue
Each day felt a little bit easier. The more I did, the less I dwelled on the situation; the more inspired I got, really. The world goes on with or without me, and it was comforting to have so many different things to focus on besides myself. Yes, the drains were a pain, but my camisole had little pockets for them, and once I was hiking, I didn’t notice them. I put on make-up; I washed my hair over the kitchen sink. I took showers with a detachable showerhead, careful not to get my chest wet, and sponge bathed my armpits, which was super strange; my left armpit is still pretty numb, so I can’t really feel how hard I’m scrubbing with the cloth. I also had to avoid getting my gauze wet.
I took the Gabapentin (Neurontin) once a day for seven days, as directed, and took one Norco each evening for the first five nights. I must say, they really helped with the pain. Although I was uncomfortable, I wasn’t in extreme pain, and felt better not taking them. The next night after stopping the Gabapentin, however, I had my worst bout of insomnia – up until sunrise, just could not sleep. I looked up withdrawal symptoms from Gabapentin and Norco, and sure enough, insomnia was one of them. I had no other conclusion to draw except I was having mild withdrawal symptoms; just one pill a day for several days, and it was enough to trigger that response. I never wanted to feel like that again, and decided I was done with those pills, regardless of the pain.
The next evening I slept normally, which was a relief, but the stabbing pain began. I’d heard about this nerve pain before, but it shocked the heck out of me when it first happened. It literally felt like someone was stabbing me in the chest with a knife repeatedly, for several seconds; then, it would just stop. Next, a burning branding pain would ensue, followed by a tingling, electric shock feeling. It was pretty intense, about a seven on a pain scale. I consider myself pretty strong and have a good pain tolerance, but this was a bit much. It happened several times throughout the day for a couple of days before subsiding; it’s only happened a couple of days since, and none the last couple of days. I’ve read it can last for weeks, months, or years, so we’ll just have to see how my body responds. At least I know what to expect now.
During this entire process, I’ve been reminded of the old adage, We fear what we don’t know. Everything that has felt scary has been something I needed to learn more about, just like this nerve pain. I’m adapting, patiently, to my new reality on a daily basis. I have a positive attitude by nature, but that doesn’t mean recovery has been easy. It sucks, yes; I have breast cancer. Radiation and chemotherapy lie ahead. The will to carry on, however, supersedes self-pity. We are resilient beings, and everyday I am reminded of this.
I continued each day after surgery trying to stay as busy as I could. The less I thought about my situation, and the more I dove whole-heartedly into life around me, the better I felt. I read, I watched women’s videoblogs who’d gone through breast cancer, and kept my daily newspaper and crossword puzzle habit going. I had some amazing conversations. I relished beautiful sunsets over the ocean that made me so grateful to live where I live.
I saw a bobcat sleeping right next to a hiking trail; I saw snakes, newts, and birds-a-plenty. I’ve always been a naturalist, and have honed my observation skills over the years through experience, but lately I’ve been a real animal whisperer. I had to walk slowly in the beginning, before graduating to my standard power-walk (I’m known for walking really fast!). There is an art to wildlife observation, and I’ve built it over the years; I’m still growing. These post-mastectomy hikes have presented a great opportunity to see more wildlife I probably wouldn’t have seen were I flying downhill on my bike – something I miss dearly.
I’m used to riding my bike almost everyday, and I cannot wait to feel the flow of two wheels under me again. This has been the longest break since my last concussion years ago. I got on my bike twelve days out from surgery, just to see what sitting on it would feel like. Just the pressure on my wrists and forearms was enough to feel uncomfortable. I couldn’t believe how something as seemingly small as holding the handlebars was. I’d never thought too much about my arms; just hold the bars and off you go. I realize it will be at least a couple of more weeks before I’ll be on my bike again – and that’s optimistic. It will be a test of patience staying off of my bike, but my body needs to heal first.
I am human, however, and there are times I’ve felt claustrophobic from having these drains attached to me; I just want my normal body back. I will get them out this Friday, March 13, five years to the date that I received title and keys for our first home in Ben Lomond. Ron and I also got engaged on a Friday the thirteenth, February 13, 2015. I’m not superstitious, but it’s an auspicious date.
Thirteen days out from surgery was one of my harder days of recovery. I had gone in on day twelve, Monday, for my appointment; I thought I’d be getting them out. My surgeon went over my updated pathology report with me, which noted a 44mm tumor, a few fibroadenomas, including the two I’d already known about for years, and extremely dense breast tissue. My Nottingham Histologic score went up to a 9/9, the worst grade.
And I wasn’t getting my drains out. My doctor was worried about infection from early removal, and proceeded to elucidate what she’d seen over the years. They used to take them out earlier, but this correlated with an increase of infections at the drainage site, which sometimes spread to the breast cavity, ultimately necessitating the removal of expanders and implants. I trusted her experience, of course, but I was disappointed to not get them out. I did get my bandages and tape off, though, which was a welcome relief. My sister came with me to the appointment and spent a couple of nights hanging out with me, which helped ease my deflated hopes (there’s a lot of puns I could run with here!). Bonus? I could finally take a full shower, which felt heavenly. I set the drains on my shower rack, and enjoyed the sweet relief of hot water flowing down my entire body. Hot water always feels wonderful, but this was exceptional. I shaved my armpits as best as I could, which felt so weird because my left one is almost entirely numb still. After almost two weeks without a full shower, I was so grateful.
I spent the next few days hiking and going to the beach for sunset, and saw one of the most spectacular sunsets I’ve seen in months. It inspired me to keep the big picture in mind, to keep my eye on the horizon. The world goes on with or without me, we all die someday, and it’s all okay. Do I want to die now? Of course not, but it’s possible. It’s surprising how quickly your mind adapts to that new reality. Granted, it didn’t come easily, but I do feel more at peace with the prospect of death than I did before this cancer diagnosis, hands down.
I feel more patient, although I have a lot more growth to do, surely. Once chemotherapy starts, that will elicit a new sort of patience. I am amazed at how natural it is for patience to evolve in the face of adversity. Yes, I think attitude has a lot to do with it, but we’re innately hardwired to do so already. Once you choose it consciously, the pieces fall into place. Sometimes, you have no choice in the matter; it’s a matter of taking care of yourself – survival, almost – of living in a place of anxiety and fear, or living in a place of peace and openness. When I was first diagnosed, I’ll never forget what a friend and colleague said to me at work. She explained that her friend had gone through breast cancer, too; what helped her most, she said, was learning to control her mind. It made perfect sense when she said it; I was in that shell-shocked, terrified first few days after diagnosis, and my mind was cycling through all kinds of sad scenarios. Riding my bike was major therapy during that time, luckily, but it wasn’t enough to eschew my fears altogether. Her advice was timely, and appreciated; I took it to heart. I’ve meditated many times before, and consider forest bathing and time outside in nature to be a meditation, of sorts. There are many shades of meditation, but her words – control your mind – really resonated with me. It’s become one of my mantras throughout this whole process. Thank you, Elizabeth, for this gem of wisdom.
Today is Thursday, March 12, 2020, and I’m on Day 15 with the drains. Tomorrow, I’ll get them out. I’ll also meet with my oncologist to go over the plan for chemotherapy and possible radiation. I can’t wait to wear a normal camisole without the drain pockets; to put on a cute outfit again. I want to exercise more than just a brisk walk and yoga. I miss riding my bike so much it makes me cry. I miss the endorphin rush of intense cardiovascular activity that I’ve become so accustomed to over the years. I miss feeling like my full self, and I’m only at the start.
I worry I will never get back to my full self. I worry that I’ll never ride like I used to. I worry that I won’t be the wife I was. I worry that I will die young, which always seems to make sense to me for some reason. I’ve lived my life pretty enthusiastically, keenly aware of its brevity and sanctity, living by the old cliches of Carpe diem and Live like you might die tomorrow. I have a fire lit under me most of the time to get after it, whatever it is. I know I can still grow more grateful, more passionate for life, but I feel like I’ve already been living like that for a long time. Was this vigor and lust for life enough to keep me from getting cancer? No.
Finding out you might die soon makes everything come into clear focus – that which you are happy for, and, on the contrary, that which bothers you. That includes everything from environmental problems to unsolicited medical advice. Cliches that oversimplify the situation don’t help. At the end of the day, I appreciate any and all positivity, and am grateful for anyone who authentically cares about me. My sensitivity is heightened, though, and I find myself having a shorter temper than usual. It makes a casual comment, like, Your cancer isn’t that bad; you’re going to be fine, meant with good intention, surely, sting a bit. No, the cancer is pretty bad, and no, I don’t know that I’m going to be fine; I don’t know that it won’t come back to kill me. There’s the Someone I know had it way worse than you story, intended to make you feel better, but it just makes you feel guilty for feeling sad about your situation. If someone else went through something so much harder, then surely my experience can’t be so bad, right? No; of course not, but it can evoke such thoughts.
Hiking the Santa Cruz Mountains, California
I’ve been reading like crazy, and I listen to what doctors are saying; what years of clinical trials and research have proven. I’ve pretty much already been eating the healthy diet they recommend for years; no, I’m not perfect, but I can honestly say I’ve eaten well in my life – pescatarian for twelve years, no alcohol for seven, I drink a lot of water everyday. Did it count? Did it protect me? Apparently not. I am always open to improving, learning, and growing, but when it comes to medical advice, I’ll listen to the experts. I am not opposed to advice, but I don’t like being pressured into something that doesn’t work for me. I will try something on, but if it doesn’t fit, I’m not wearing it. I don’t like being told what I should do or not do, especially when it comes to cancer. I don’t need to hear what I should be eating, what I should be doing, or how I should be feeling. My friend Tracey and I once joked that we hate when people should on us. Don’t should on me! we laughed. Just do you.
Arrogance is one of my biggest pet peeves – that, and lack of awareness. I don’t appreciate it when someone acts like they know it all and aren’t even paying full attention; they don’t see the writing on the wall. Sometimes, I want to say, Humble down. Take a humble pill. When I say people, I’m not implying specific people; rather, a general form of the word, from people on the comments section on blogs and social media, to a few people in my own life, too. I’m a pretty open and honest communicator, and will tell someone as directly yet gently as I can if I’m feeling unsettled about something. Again, I mean people in the general sense of the word, so please don’t read too much into it if you know me personally; trust me, I would tell you if something bothered me.
We are never done learning; there is always something more to learn, more depth to explore, more questions to ask. While I’ve read a few informative books and a myriad of articles online, I wouldn’t pretend to speak of cancer with any degree of expertise. Arrogance is the last thing I need here. I am very much a student in all of this, trying to stay as open to the experience as I can so as to saturate myself with the essence of this disease, only to squeeze myself dry of it like a desiccated sponge should I make it out alive. I don’t joke when I say make it out alive; I really don’t have full faith or evidence that I will. That’s why I am more sensitive to what others say right now. Forgive me while I vent; this is part of the process of anger. Like I said, everything is magnified right now, and I can’t help but notice. I feel like a wounded animal. I just want to curl up alone and hide; to lick my wounds in solitude. Bless anyone who tries to help. However, there are times in life where it’s best to admit you don’t have all the answers, you’re not an expert on breast cancer, and just listen; that goes for myself, too.
Lately, I find myself wanting more of that – listening. The patient, I’m just going to sit with you and listen while you talk kind of help. My family has done a stoic job of this, from the early days of diagnosis, to the early days of post-surgery recovery. I’ve had some incredibly inspiring conversations with them that have buoyed my spirits in that way only family can. Talking and messaging with friends has been really comforting as well, and every card I’ve received in the mail has warmed my heart.
My husband has been a professional-grade therapist, letting me jump from happy to serious without missing a beat. He’s ridden the roller coaster of emotions with me, cried with me, laughed with me to ease my nerves. He knows there’s nothing he can say to fix the situation, and he has grown to be an even deeper listener. He sits with me and empathizes, but doesn’t offer platitudes, or oversimplify my struggle with an order to just keep my head up.
He listens like my paternal grandmother, Sheila Prentice Craig, did. She passed away last year, and her absence left a hole in our family that no one can fill quite like her. Sheila was one of the best listeners in our family; she was one of the few people from an early age who really just seemed to lean in to others when they talked. She gave her full attention; she reacted honestly and genuinely, leading a graceful dance of a conversation that would bounce from topic to topic. I would talk with her about everything, from our shared love of birds, to our shared love of the environment. I felt like she saw me for who I was.
I’ve been really wanting to talk to her lately about all of this. I told Ron the other day, and he asked me what she would say to comfort me. I paused, and replied:
Nothing. She wouldn’t say anything in particular; she would just listen and look at me in a way that I knew she understood me. She wouldn’t judge me or try to fix me. She would sit with me and hold my hand, but offer no sympathy; she didn’t care for that. Just pure, true empathy.
I miss her so much, but I realize how much she taught me about compassion, about being a good listener; about not being self-centered. We had a lot in common, and I’ve been told I’m a really good listener myself. I especially appreciate a good, patient listener these days. Patience: a golden virtue.
Patience is adaptive; it is constantly responding to life in ways we aren’t even aware of. When we think we can’t handle it, or can’t wait any longer, we prove ourselves wrong by persevering. When we’re overwhelmed, patience sits with us until we’re out of the woods. When we’re waiting to get surgical drains out so we can take a nice, hot shower, patience is paramount. I am amazed not at myself, but by how our minds are so well-adapted to adapting – we are meant to grow accustomed to life’s changes. Natural selection has shaped us for these challenges, and I am really feeling the effects of its power right now. It’s in my genes to get used to this.
I’ve also been reminded of how important it is to not judge ourselves, or others. I have to forgive myself when I get angry, when I feel despondent, and I have to allow myself to laugh and feel happy without feeling like I’m lessening the severity of the situation. Though one in eight women will get breast cancer in the United States, people deal with it in different ways; there is no right or wrong. I read so many people’s stories before surgery, and was in awe of the variety of stories; it helped me so much, and motivated me to share my story, too. Everyone’s journey is unique to them. What works for one woman may not work well for another, and that includes pain medication. I don’t judge anyone who takes pain medication, let alone after a major surgery, and I also don’t judge those who didn’t take any pain medication. To each their own. I hope that anyone who reads this understands this is merely my experience, and I don’t presume to speak for anyone else.
I surprisingly enjoyed some of this down-time. I am on a leave-of-absence from work, so each day has presented me with the gift of time. While I’d rather be on a real vacation, it’s still nice to have this time off, especially now. I’m a positive person by nature, but healing hasn’t been a cakewalk, either. What helped me cope most was hiking, being outside, and reading. When I would get sad, I’d try to make a conscious effort to dive into something interesting; to put my energy outward, learn something new, get outside of my own head. The important thing is to listen to my body, and take good care of it; that’s really what matters.
A cancer diagnosis befalls you like a rain-soaked cloud, obstinately sitting on your shoulders, but it doesn’t keep you from seeing the beautiful world that remains in front of you. As long as I’m able, I’ll keep going outside, keep appreciating the natural world, and keep getting outside of myself. I may have this shadow following me around now, but so far, I can still see the rainbows and light in front of me. I realize how much more good there still is in the world, whether or not you are sick, and that will always be the case. Even when I die, the world is still full of more good than bad, more beauty than decay, more love than hate, more humility than arrogance. Life isn’t all rainbows and butterflies, as they say, but they’re out there – and that’s enough for me right now.
Here’s a video I made on March 12, 2020, about my journey so far.