Life 12-Weeks Post-Mastectomy

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.

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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. 

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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. 

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. 

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.

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.

Which reminds me – I need another glass of water.

Recalibrating Gratitude

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. 

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. 

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. 

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.  

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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!

 

Walking With Dream Legs Toward a Moving Horizon

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. 

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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. 

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. 

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The Solace of Sunset

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. 

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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. 

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. 

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…

Life is the essence of Spring

***