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.
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.