Post-Cancer Treatment Blues

My life feels a little bit like a post-apocalyptic movie these days. A torched Earth smolders as survivors scan the horizon for signs of life, all but unrecognizable under a silvery ash. While grateful to be alive, they can’t help but feel a bit shell shocked. Stunned, people emerge from the shadows, wondering out loud: 

What happened?! 

It’s been over two months since I finished radiation treatment for breast cancer, and I feel like I am living in such a land, wandering around my new reality of life post-cancer treatment. I feel like I’m walking in the burnscar of the CZU Lightning Complex wildfire that happened in the Santa Cruz Mountains in August 2020. The landscape is familiar, but the devastation is pervasive, even with signs of regrowth. The analogy to cancer is stark.

I am exceptionally grateful to be alive at all, but the uncertainty of recurrence, coupled with a gnawing anger about why I didn’t catch it sooner, haunts me on a daily basis. I’d read about Post-Traumatic Stress Disorder among cancer patients, particularly after treatment ends; it helped to know that some irritability, worry, and depression were to be expected. As I wrote about in my last post, I’ve been feeling a bit like Jekyll and Hyde, vacillating between feeling extraordinarily grateful for life, and feeling totally down about cancer. 

Adapting to my new life post-treatment presents a slew of challenges I couldn’t quite appreciate until I was actually done with the bulk of treatment, chemotherapy and radiation. I am still in treatment, technically; about eight weeks ago, I started taking Tamoxifen, a daily anti-estrogen pill, in hopes of reducing my risk of recurrence. I may be on it for the next ten years. My current sadness and worry could be compounded by Tamoxifen, which is linked to depression and changes in mood, and I don’t doubt its influence. 

As I’m learning, there are really no guarantees of reducing your risk of recurrence, despite all the measures you take. Accepting this reality has been the hardest thing to adapt to in my new life. When I finished radiotherapy on September 23, 2020, I felt a huge sense of relief and accomplishment. It was soon overshadowed, however, with a nagging, dubious worry: did treatment work? Were there still any cancer cells in my body, and if so, how many, and where? To what degree – if any – could I influence whether these cells would go on to proliferate? How much was within my control, and how much was just random chance? And what was I supposed to do with all this newfound fear I was feeling? I’ve been wrestling with these questions daily. 

It is totally unsettling to know that there’s no promising anything worked, and that it could still come back. Only time will tell. Coming to terms with the mystery of what caused my cancer in the first place, and the ambivalence about my treatment’s efficacy, is tough. There’s a lot of grey area that I have to learn to live with, and as I’m starting to see, being mad about it doesn’t really help in the long run. I haven’t yet reconciled my anger, clearly.  

I’m a pretty tenacious, strong person; a realist-optimist. I will sit on a ridgetop in sixty mile per hour winds in a blizzard, and relish in the potential that awaits in the descent on my snowboard. I’ll pedal up a punishing mountain pitch, day after day, because I know how fun it is to ride down it. I enjoy making myself uncomfortable – pushing out of my down-filled comfort zone, stretching my seams. I am a self-proclaimed master of delayed gratification, understanding the give and take of earning your turns. I love a good challenge, and I’m not afraid to work hard for a reward. I’ve been skydiving, rock climbing hundreds of feet off the ground, and I fly through the forest on my bike like a bat – agile, responsive, completely aware of its surroundings, guided by echolocation through the trees. I am human, of course, and I do crash into things from time to time; I’ve had some pretty scary – and painful – falls.

But breast cancer? This has been a bit much. This is by far the scariest thing I’ve ever dealt with, hands down. I don’t feel like such a badass in the face of cancer. I am learning to navigate this new world of uncertainty, and it calls for more humility than I’ve ever known.

I take pride in being an athlete, and an intellectual. It has been relentlessly difficult to accept that my strength and fitness didn’t prevent me from getting sick. Equally, it’s hard for me to accept that I’m having slight symptoms of chemo brain; over the last couple of months, I’ve noticed moments of it, as much as I hate to admit it. Sometimes, when I’m watching Jeopardy!, the answers don’t come quite as quickly, or at all; I can see the first letter of the answer in my mind, but the rest doesn’t come. Then again, I’m able to recall many answers with rapidity. There’s other signs, though. When I’m writing, occasionally I have trouble thinking of a word; it may take longer to identify it. There are moments when I can’t remember a fact or detail about a topic right away that I would typically know. Occasionally, I find myself repeating things, thematic as this time in my life may be. 

It’s not constant, but I know myself well enough to notice a difference sometimes. I feel my brain working a little bit harder than usual. I do crossword puzzles and word jumbles everyday; I read; I practice my Spanish. I’ll do all I can to fight it, even if it is a normal side effect of treatment. A lot of it could be compounded by fatigue, but I hope it resolves soon.

The shame that goes with cancer is like nothing I’ve ever experienced. No holds barred, just writing about chemo brain makes me feel a little inadequate. Sometimes I feel like damaged goods, like I’m eternally flawed. There’s a feeling of failure so complete that it can blind you of your prevailing assets; like there’s something wrong with me – something terribly, irretrievably wrong. It’s torturous. I’ve gone over every detail of my life with a fine-toothed comb, analyzing everything from my past to the soup of pollutants I’ve been exposed to since my birth in 1980. The mystery of cancer is maddening. It is incessantly frustrating to have no clear answer for why I got it, or what I’m doing now that may invite it back. It makes me feel powerless. 

In a way, I feel like I’ve been marked for death. Dramatic as that may sound, when you have a roughly fifty percent fifteen-year recurrence rate according to some studies, you might feel the same. Based on my young age at diagnosis (39), large primary tumor size at resection (44 mm), metastasis to 3 lymph nodes, and Nottingham grade of 9, I don’t have the best long-term prognosis. Of the dozens of articles I’ve read on NCBI, my favorite website of late, most of them outline elevated risks of recurrence for someone in my shoes. I was Stage IIB, with ER/PR+, HER2-, BRCA-, invasive ductal carcinoma. My odds aren’t as good compared to someone who was diagnosed at Stage 1 with a small tumor confined to one breast. I didn’t catch it early, and I’ll forever regret it. Granted, my odds maybe aren’t quite as bad as someone diagnosed Stage IV. Likewise, someone who caught it early may have a recurrence, while someone who caught it late may live to die old. There are shades of grey in the world of breast cancer, and none of us know if our cancer will come back until it does or doesn’t. The research is growing, and studies can provide estimates and averages, but cancer remains enigmatic.

I’ve been reading lots of breast cancer blogs and forums about life post-treatment, trying to hear some echoes in the cybersphere. I can hear them loud and clear; it comforts me when I read about someone else feeling how I do, worrying about recurrence, or having post-treatment fatigue. PTSD is mentioned often, and I feel like I may be experiencing some level of it lately.

I’ve been feeling extremely irritable, getting riled up at things that I may usually let slide. Someone’s nose sticking out of their half-on mask? I almost see red. 

Cover your beak! I fume inside. 

Someone stares at me stone-faced and doesn’t say Hi back on the trail? 

Why does everyone always have to act too cool?! I lament internally. I really do wish people would say hello more often out on the trails, even during, or rather, especially during, a pandemic. Enough with the stoic aloofness already. 

Admittedly, I am regularly annoyed. I’m not handling any sort of stress very well; I get an immediate pit in my stomach. I’m sensitive, and find myself more defensive than usual. I’m like an injured dog who just wants to be left alone to heal. I’ve got a real case of the cancer blues. 

I felt some of it earlier during treatment, but now it’s worse than it’s ever been. Every time I don’t feel well, I wonder if it’s back. A headache, stomach ache, or even neck tension can put me on alert. My body, usually a source of pride and joy, feels tarnished by an insidious, lurking agent of death. I feel like a timebomb has been implanted within me, and I have no idea how much time is on it; it could be months, or years. 

The uncertainty I live with now is all encompassing. It feels like I’m constantly waiting for the bottom to drop out. I used to be excited about the future, like the blank slate before me was inviting instead of menacing. Now, I feel worried about the future, untrusting. It’s like getting bitten by a dog; you’re always on guard for it to snap at you again.

Pelicans Over the Pacific

Exacerbating matters is the loss of my beautiful, long hair. Though the Paxman cold cap saved my hair for the most part, it got really thin at the end and is pretty awful looking at the moment. I’ve cut it to about chin length, with my new growth spiking up a few inches long, coming in thick all over my head to my excitement. Overall, I lost probably over 75% of my hair. When I pull it back into a ponytail, it looks somewhat decent, but I don’t feel like my old self; I see yet another thing cancer has taken from me. Ultimately, I’m glad I did the cold cap treatment, as it was a blessing to keep my hair during treatment. 

When I could see my tumor, right before my mastectomy, I was so terrified by how it had started to protrude out of the skin, as if staring me in the face. I am taunted everyday by the fact that I didn’t catch it earlier, that it hid so well under a well-known and large, examined fibroadenoma. I can’t help but wonder where else in my body it may have taken up residence. Like a zombie fire, lurking beneath the forest floor after a wildfire, cancer can smolder insidiously before roaring back to life, swallowing everything whole. Recurrence often means death within a few years. 

I may flippantly joke that at least I don’t have to suffer getting old if I die young, but it doesn’t come close to easing my truest fears about dying from cancer. I think about how I’ll die, specifically; will it be pneumonia? Will I stop being able to swallow, and then die a couple of days later? Will I suffer a stroke or heart attack amid the stress of disease? Will it be sudden, prolonged, painful, or peaceful? Controlled, or random?

Or will I die from a distracted, texting driver on the road who hits me on my bike?

I’ve always had a pretty good handle on how short life is, and that we could die at any time, but I think about death far more often than I ever have these days. When I look back on everything I’ve been through this year – from diagnosis on February 3, to double mastectomy on February 26, to eight rounds of dose-dense chemo, to five weeks of radiation, to now being on Tamoxifen…it makes my head spin. I do feel like I’m walking through a post-apocalyptic world, where the scorched Earth is my poor body. 

I am alive and kicking, however, and I have an insatiable lust for life. 

I keep riding my bike, almost everyday, because it’s one of the few things I can do to instantly improve my mood, lighten my load, and put a big smile on my face. It’s been my refuge, my solace, my therapy, my motivation, and I am thankful for each and every ride. I don’t think about cancer when I’m riding downhill; I simply feel like a badass mountain biking bee-atch. I feel inspired, confident, grateful, and happy when I’m flowing on two wheels. 

There is a curious, fighting spirit in me; a positive streak, refocusing my energy to gratitude, to all the things that are going well in the world, and all the people that do say hi back on the trail; to all of the incredible living beings that inhabit this amazing planet. 

This is the flipside of the dichotomy of healing: the amazingly appreciative attitude that emerges after fighting for your life. On the other side of fear and anger is love and acceptance, a reverence for the miracle of life. I have had many days where I feel like I’m living in a dream, where I feel blessed beyond measure. I can spend hours marveling at tidepools, rock formations, birds in the forest. We had a heavenly trip to Yosemite and Mono Lake this Autumn, which felt like walking through a watercolor painting.

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Halfdome

The recent King Tides have brought a wonderful world of exploration along the California coast. 

I feel calm, content, and free when I’m out in nature, and I prioritize time outside. There’s a childlike wonder for the universe that thrives inside me, perhaps saving me throughout this challenging experience, keeping my perspective in check. Immersing myself in the beautiful, infinitely intriguing world – its plants, animals, geology, and complex history – has provided a stable escape all my life. I feel comforted when I’m learning something new, and it always reminds me how much bigger life is than me and my “problems”, real as a problem as cancer may be. Losing yourself in a good book, or good online article for that matter, is one of life’s simplest yet most powerful pleasures; it can be therapeutic, really. I am grateful to live in a day and age where so much information is at my fingertips. Learning serves as somewhat of an antidote to self-pity; you have to focus on something beside yourself, gleaning valuable information, which then makes you happy. 

California Sunset

I am learning emotionally, too – to accept that feeling down is normal, and human, after everything I’ve been through this year. Forgiveness is paramount to my healing. I must forgive myself for not catching it sooner; for getting cancer at all. I must forgive my feelings of anger, fear, and sadness. I must forgive the collateral damage of side effects I’m experiencing post-treatment. 

I’m also realizing how grateful I ought to be for the forty years I’ve lived so far. It’s been a pretty incredible four decades so far, and the more I reflect upon my life, the more beautiful a picture emerges. Maybe it’s rose colored lenses, but I’m lucky to have lived this long, in such good health and spirit, experiencing a multitude of adventures along the way. Looking back, I feel proud of the life I’ve lived. 

Mountain biking and knowledge are pretty spectacular antidepressants, but there is nothing like love. My husband and cat – my boys – fill my heart, and our four walls, to the brim. My family are my rocks, whose encouragement and compassion mean the world to me. I’m a bit of a loner, but I am undyingly appreciative of my friends, whose camaraderie and connection makes me feel like I belong. I’m also grateful for the words of people whom I’ve never met, whose eloquence in describing their own struggles online help me put a name to mine. I am grateful that while I may feel alone sometimes, I am not actually alone. It also helped me understand that the side effects of Tamoxifen are real, and I’m sure it’s affecting me. Bless the gift of kindred spirits in this world.

The most effective cure to sadness is gratitude. Just thinking about mountain biking, learning, and the love of family raises my gratitude meter, and those are just a few of my favorite things. Music, dancing, gardening, birdwatching, running, yoga, hiking, cooking…there’s always something to do. Long walks on the beach? They’re loved by so many because they are one of the simplest yet most satisfying things in the world. I love – and need – my long walks on the beach as much as I need to ride my bike downhill. 

Are gratitude, hobbies, and passions enough to take away my cancer blues? I believe so, and the more time I spend pouring myself into them, the better I feel. They serve in the very least as a positive distraction from cancer, and I’ll keep busy with them everyday. My love for life is unwavering, and if I can stay focused on that, I think I’ll ride out this wave just fine. There’s no shortage of inspiration in the world; sometimes you just have to focus harder to see it. 

Here’s to having 2020 vision – in a year that demands it.

Finding Flow and Grace During Chemo

If adaptation and patience are the nature of this game, then flow and grace are its cornerstones. 

I am six chemotherapy treatments in for Stage 2-B invasive ductal carcinoma, and cases of COVID-19 are surging in the United States, including my home state of California. The world is turbulent on many levels. There’s been a lot of adaptation and patience since I was diagnosed with breast cancer on February 3, 2020, at the start of the pandemic. As I’ve mentioned in previous posts, everything from a cold, to low white-blood cell (WBC) counts have caused delays in my chemotherapy. Once again, I had low counts in early June, and my fifth infusion was delayed a week until my WBC came back up.

I enjoyed the extra week off, visiting the tidepools in Santa Cruz, California, during minus-tides, which is absolutely breathtaking. I love spending hours exploring the biota and geology of beaches, especially on California’s tectonically dynamic coast. I’m a Natural History fiend. I find a lot of flow and grace living where I do, and am exceptionally grateful to live here!

On Friday, June 19, I had my first Taxol (Paclitaxel) infusion. It comes with a higher risk of allergic reaction, so the doctors prime you with 4mg Dexamethasone pills (brand name Decadron) – five the night before, and five the morning of; they also prescribe Pepcid AC, and Zyrtec the morning of. Due to the July 4 weekend in a couple of weeks, they delayed my next scheduled infusion #6 to Monday, July 6, instead of Friday, July 4. 

During my infusion (Day 1), they closely monitored my blood pressure, heart rate, and checked in on me regularly for signs of allergy, but fortunately I didn’t react. The one thing I wasn’t prepared for was ice-packs for my hands and feet to help reduce the odds of chemotherapy-induced peripheral neuropathy. I’d heard this was a possible side-effect of Taxol, but when my nurse told me it could become permanent, my nerves flared. I didn’t have any ice for that first Taxol infusion, which was a marathon infusion – 6 hours from check-in to check-out! Two full hours of cold-cap (30 minutes before infusion, and 1.5 hours afterward), plus three hours for the infusion itself…it was a very long day in the chair. I brought my awesome Geology book, though, and read it like crazy, which was an effective distraction; a way to flow through the appointment. I imagined myself in the mountains I was reading about; exploring the striations of folded rocks melded together by forces so colossal beneath our feet. Learning is one of the best tools for distraction and finding flow. It really helps to lose myself in a good book – especially one about my favorite subject, Science. The more time I invest in learning about the world around me, the smaller my problems seem. There is grace in perspective. There is always something more to learn, coupled with an incessant need to know more. Flow is procured by the pursuit of knowledge. 

I felt fine the next day (Day 2), and perhaps was energized from the steroid pills I’d taken the day before. I didn’t need to take the anti-nausea medicines, Zofran and Zyprexa, that I’d taken with the previous chemo cycles, as Taxol wasn’t known to cause bad nausea. I felt better knowing I didn’t need to take any pills aside from the ones I took before the infusion. The Zyprexa had even made me gain a few pounds, not that it really mattered. 

Later that day, I went for a long bike ride, which has been my saving grace throughout this journey. It was the Summer Solstice, and a beautiful day. The escape, fun, and confidence I get from being on my bike is impossible to articulate. It’s all about flowing with grace. I feel like a rockstar when I’m on my bike! 

It was also the ten-year anniversary of us adopting our beloved cat Beau, rescued from the streets of Santa Cruz by Ron. We spoiled Beau with treats and pets throughout the day, reminiscing through old photos of him as a Spring kitten. 

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Beau!

When I awoke on Day 3, I was sore beyond belief; not just typical post-ride sore, but creaking in my bones, slowly moving up and down the stairs like an old-lady kind of sore. I’d heard that musculoskeletal pain was common with Taxol, called arthralgias (joint pain) and myalgias (muscle aches), especially on Days 3-5, and here the pain had arrived, right on schedule. I felt like I’d run a marathon the day before (something I’ve never done before; 14 miles is my longest run yet). My knees felt like they had no cartilage; my ankles weak. My hips were as tight as a guitar string. It was pretty excruciating, but I knew sitting around the house wasn’t going to help, so I forced myself out for a short hike.

My legs felt heavy, and everything from my hips down to my feet ached like crazy, but it did feel better than sitting. Keep on moving! I may not be able to mountain bike everyday through chemo, but hiking, yoga, and merely puttering around the house and garden all help. That night, however, I was super uncomfortable just trying to get to sleep; I put a pillow between my knees because I couldn’t stand the pressure of my kneecaps touching. I cried a little bit from the pain, but managed to fall asleep. 

Sunday, June 21 was Ron and mine’s fourteen-year anniversary. Of all anniversaries, this one came with the least fanfare, understandably. I felt bad we couldn’t celebrate properly, but knew we’d make up for lost time eventually. 

Monday, Day 4, was the worst. It hurt to walk up and down the stairs of the house; my knees felt shaky and weak. Determined to keep on moving, I forced myself out for a hike at Big Basin Redwoods, roughly seven miles round trip up to Buzzard’s Crest. Again, it felt better to move than to sit still. It was my first time up here, and the views were incredible – Pacific Ocean to the West, Loma Prieta mountain to the East. This sandstone outcropping is evidence of the San Andreas Fault system which makes the mountains we mountain bikers so cherish here in Santa Cruz. I was pretty much limping by the time I went to bed that night, but I knew it was better than if I’d just sat around at home all day. I didn’t take any pain medication because I don’t like taking pills if I don’t have to, and I wanted to see just how bad the pain would be; I needed to know what I was up against. I like persevering through pain. 

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Another weird side-effect of chemo? You’re toxic for a few days after each infusion. That means closing the lid and flushing twice after using the toilet; using separate eating utensils, cups, and plates, all which must be washed carefully; not sharing any food or drink; and washing my sheets and clothing on the sanitary cycle. On top of the fatigue, dry skin, sensitivity to sunlight, and hair loss, you’re temporarily poisonous. 

Tuesday, Day 5, was a much better day. I was sore, but not in pain. Ron and I had an amazing day – our first date out together in months! We went to the Verve Coffee in Santa Cruz and got mochas to go; they had a strict No Cash policy, like many other stores these days. We went to Schwann Lake and checked out the beautiful families of nesting cormorants in the Eucalyptus trees, which was mesmerizing, before heading across the street to Twin Lakes Beach for a stroll, and a body-surf in the ocean for Ron.

Afterward, we went to the Crow’s Nest Beach Market and got take-out dinner, which we ate outside on a dock at the Santa Cruz Harbor. It felt amazing to be out with my husband, doing something normal. It also felt great to see other people out and about after months of shelter-in-place. And, my bone pain was fading. 

I woke up on Wednesday, Day 6, and felt totally fine. I’d made it through the hard part! I had a stellar bike ride to boot.

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My Baby

Thursday, Day 7, June 25, I woke up early to go up coast for a minus-tide exploration at one of my favorite beaches. It is night and day how different the landscape looks between low and high tide! I slowly strolled the beach, always avoiding stepping on living things. That’s most important when exploring tidepools: never step on anything living! It’s not worth seeing a creature if you have to step on even one barnacle to get there. Biota is lava! Don’t step on it. Tidepools can be severely impacted by hoards of people carelessly trampling them, so it’s imperative to Leave No Trace when exploring them. I spent five hours from the morning until afternoon, happy as a clam, in my element. These are some of the moments I live for.

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Ling Cod Washed Up

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Serenity

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Coastal California

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Minus Tide

That night, I had my first social event in months – since my last day at work on February 13, to be precise. Our awesome school principal, Mary, was resigning after nearly twenty years, taking a promotion over the Hill. We wanted to celebrate her years of dedication despite the pandemic, so a few wonderful teachers organized an outdoor gathering at a teacher’s home in Santa Cruz with a huge backyard. I was so excited driving over there; it didn’t occur to me how much I missed socializing until I was on my way! People! I would get to see people in a group, who I knew well and whose company I enjoyed. Friends! Camaraderie! Oh, Joy!

That evening was so uplifting. There were about twenty of us there, and we maintained social distancing quite well in the backyard. It was so good to catch up with each other, especially since I hadn’t seen any of them in over four months since I went on my leave-of-absence. I was giddy. I went home that evening feeling as though I’d been wrapped in a warm, cozy blanket. I’ve known many of my colleagues for thirteen years, so it definitely feels like family!

Friday, June 26 was equally fantastic. My spectacular father, Laird, came to visit me. We went out to lunch for our first time in months at one of my favorite restaurants in the San Lorenzo Valley – Casa Nostra. They have a huge outdoor patio for seating, where we enjoyed a leisurely lunch with perfect weather. I really cherish these dates with family, especially my dad. He was the first man to take me out to a really nice dinner back when I was a teenager, after all. We went back to my house afterward and relaxed outside in my garden, just talking for hours. It was one of those special days that simply evolves ever so beautifully. I felt so much love around me – from seeing my colleagues the day before, to this splendid day with my father. 

That weekend, I got out on my bike to Demo, one of my favorite places to go for a long ride; I rode Flow Trail, the perfect name for what I need right now in my life. 

I also went to the grocery store, which probably needs no further explanation; needless to say, it reminded me of the stressful times we are living in. I felt like I needed to get away from it all, to change my scenery and get out of town. Ron and I hadn’t been able to go anywhere out of the county for over four months (except doctor’s appointments in San Jose, and I made a trip in June to see my folks up in the Bay Area for the day), and I was really feeling like I needed a break. I have a positive attitude most of the time, but I’m human, too; this is a hard time I’m going through. Furthermore, we hadn’t enjoyed a hot tub in over four months, since February 25, the night before my mastectomy. We both love hot tubs, and usually take them often, but haven’t been able to go to our usual spot with SIP restrictions. 

We resolved that it was time to get out of town for the night – somewhere not too far away, but far enough to change perspective, and certainly get a hot tub in. We also were due to celebrate our anniversary from the week before. 

Monterey fit the bill perfectly. About an hour’s drive South of us, we set out on Monday, June 29 for what would be an idyllic two days spent amid ubiquitous beauty. It was sunny, fog-free, and glorious. We explored many different beaches, driving as far into Big Sur. We got scrumptious takeout from Rosine’s in downtown Monterey before returning to our hotel, which had its own hot-tub. It was absolute heaven – worth the escape in its own rite. It felt so amazing to finally take a hot tub!

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Big Sur

The next day, we rented kayaks in the morning and paddled out of Breakwater Cove around Fisherman’s Wharf and the Monterey Bay Aquarium, making a beach-landing on a secluded cove for a snack. It was just perfect! Rafts of sea-otters rolled in kelp beds nearby; salps floated near the surface like aliens encased in pods. Fish schooled near the surface, as seabirds dive-bombed them for lunch. Monterey Bay is a remarkable habitat, deserving of its status as a National Marine Sanctuary. It was the best two days we’d spent since February 3, and helped add some flow and grace back into our lives. We wore masks when we went out, and barely interacted with anyone.

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Later that week, I headed up to my mom and stepdad’s house in Walnut Creek for the day to see my sister and her awesome three kids from Carlsbad, and my dad; it was the first time we’d all been together in months! We spent the day outside exploring Las Trampas Creek behind their house, and really enjoyed seeing each other.

For Independence Day weekend, Ron and I spent both days playing in the waves at the beach in Santa Cruz. We felt like kids together, reminiscent of when we first got together, when I was just 25 and he 36. We also had our first real dinner-date in months at one of our favorite restaurants, Chocolate, eating at one of their sidewalk tables outside on Pacific Avenue. It was an ideal weekend; one of those perfect Santa Cruz Summer days. 

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It capped off over a week of a somewhat return to normalcy; to socially-distanced socializing, and getting out a bit more. It would also spark a spike in COVID-19 cases, as we weren’t the only ones happy to get out after months of restrictions. 

At the end of the weekend, I got my blood drawn in preparation for chemo, and alas, my bloodcounts were low. My WBC tanked to 2.7 K/uL (2.7 thousands per cubic kiloliter of blood, or 2,700), my lowest number yet; my platelets and neutrophils were low, too. On Monday morning July 6, the day I was scheduled for my sixth infusion, my oncologist informed me she was delaying my infusion by a week, until July 12. 

At that point, I voiced concerns over so many delays: eleven days delayed for my first infusion due to a cold I had, and got a negative test for COVID-19; seven days delay for low bloodcounts; another seven day delay for low counts; and now, she was proposing a nine day delay since I’d already been rescheduled from July 3 to July 6 for the holiday weekend. I understand that delays are part of the process, and data reigns supreme. Patience is the nature of the game, but I was going on a month of combined delays. I’d come across some articles online citing reduction of survival odds when chemotherapy regimes aren’t followed on schedule, when there are too many delays, and despite my oncologist’s attempts to allay my worries, I was pretty bummed by the prospect of another delay. 

My doctor heard me loud and clear, and suggested I take a stronger Zarxio injection for two days to boost my numbers; I’d re-test Tuesday July 7 in the afternoon to see if my numbers were up. Fortunately, they spiked rather freakishly, with my WBC all the way up to 57! I was cleared for chemo on Wednesday July 8, though, and was relieved at not having to wait another week for my sixth infusion.

Chemo #6 went okay; my nurse gave me ice-packs for my hands and feet this time, saying she didn’t want me to develop neuropathy. I assured her I’d bring my own ice-packs for the next two infusions, and thanked her profusely for her thoughtfulness. The day was long again, nearly six hours from start to finish, but I was happy to be progressing along. I even came home to a gorgeous bouquet of flowers from a sweet friend. If all goes to plan, I should have two more infusions of Taxol left. I preface that with an if simply because it’s likely my treatment plan will be adapted again, and there’s really no guarantee that the chemo will work at all. 

You won’t hear me saying, “I beat cancer!” or “I’m kicking cancer’s butt!” because I know the odds aren’t necessarily that great in the long-term. Humility is important here. I’ve read enough research, and personal stories, to know that cancer can come roaring back, and when it does, it’s almost always incurable. I’ve told Ron before that he has to be ready for that news, should it ever come, because it’ll mean I’m looking at an extension of life, not curing my cancer. People can live for years with metastatic breast cancer these days, by far longer than years past, but there is still no cure – yet. If this beast comes back, I realize it’ll be a whole different ball game. While I try to celebrate the positive progress I’m making in my treatments, I know it’s just a shot in the dark for good odds. It’s like an alcoholic or drug-addict; you’re never really cured of your disease, but you learn to live with it and, hopefully, avoid triggers. You must remain vigilant for the rest of your life, and can never let your guard down all the way; which is why adapting, having patience, and gleaning flow and grace are paramount to my happiness right now.

July7

I’ve written about it before, but I feel I’ve been blessed with many graces in my journey so far: the ability to take a leave-of-absence from work so I can truly focus on my treatment; getting my surgery done before such operations were delayed from the pandemic; a loving, rockstar husband who has gone above-and-beyond taking care of me emotionally, spiritually, and physically; a supportive, loving family, and a network of friends who check in on me, send me actual hand-written cards and letters, and even beautiful flowers; a roof over my head and food to eat; living in the Santa Cruz Mountains. And mountain biking! My gosh, it’s been a saving grace, deserving its own category. The more time I spend on my bike, the better I feel; it’s true therapy. Gratitude is key, and the list goes on for things to appreciate. 

I was blessed with an exceptional birding experience recently, right in my own backyard. As I was reading the book What It’s Like to be a Bird by David Allen Sibley, aptly given to me by my father, I was soaking in the pages about hummingbirds, and how their neck feathers are iridescent, flashing brilliant color directly at whomever’s looking at it. As I’m reading these pages, a gorgeous Allen’s Hummingbird buzzed the Salvia blooms right next to my garden chair. I sat motionless, squinting my eyes and closing my mouth to blend in further. The last thing a bird wants to see next to it is a pair of large eyes and a big mouth facing it – clear signs of a predator. Over my years of birding, I’ve gotten pretty good at blending into the background so as not to startle them. I took Ornithology classes in college and got into birding at UC Santa Cruz, my alma mater, but I learned so many interesting facts from this book.

As I sat there watching this beautiful bird gather nectar from flowers, it surprised me by flying right up in my face to check me out. I was wearing a bright, orange ball cap, which probably caught its attention, as its main color is orange. After inspecting me, it flew right next to my left arm resting on the chair. I didn’t move a muscle as it buzzed right by my arm, close enough to feel the wind of its feathers, within maybe half-an-inch of me. This was the closest any bird has ever gotten to me. I cherished the moment before the little hummer took off for the next Salvia plant. It was such a special experience! 

I’ve also been graced with a boon of celestial events: a pink Supermoon back in March; a mind-blowing meteor shower of the Eta Aquarids, with slow-flying meteors gracing the sky every ten seconds or so; and many stargazing night hikes in the Santa Cruz Mountains. We livestreamed the solar eclipse on the Summer Solstice, which wasn’t visible in North America, and watched the recent penumbral lunar eclipse on June 13, albeit barely visible. I love how small I feel when I look into the sky; it is so comforting! 

Now it’s Thursday, July 9, 2020. I’m bracing for the musculoskeletal pain to kick in tomorrow, lasting for a few days, but I’ll see. Hopefully it won’t be too bad, and I won’t develop neuropathy in my hands and feet. I hope I can complete my last two infusions on schedule, finishing early August if all goes to plan. 

The Paxman Coldcap is mostly working, but I’ve lost well over half of my hair by now. My part and crown are thinning dramatically, and I have bald patches above my ears. Adriamycin, the chemotherapy drug I had for my first four cycles along with Cytoxan, almost always makes you lose your hair, so I am grateful for the hair I do have. Taxol is also known to cause hair loss, but the odds of the coldcap working on it are better than Adriamycin. Creative styling helps to cover my part in the meantime. It is too hot, and I’m too athletic to wear a wig, so hopefully I can make it through treatment without having to cut it all off. I’ll just have to wait and see. My eyebrows and eyelashes have also thinned quite a bit.

I’m due to return to work on August 24 for the first day of school, whatever that will look like. We have a few contingency plans in place for a hybrid schedule of part home, part in-person schooling, but it all depends on what the data for COVID-19 shows. We are all living in a world of uncertainty and waiting, a world in which adaptation and patience are the nature of the game, just like breast cancer. Who knows what August will bring? I’m due to start five weeks of radiation therapy after chemotherapy, something I’ll likely be doing after school each day. 

For now, all I can do is focus on all that’s good in life, for there is still far more good than bad. There’s a lot of gratitude, patience, adaptation, flow, and grace to be found. Though it’s somewhat deserving of its Bummer Year status, 2020 ain’t all bad. We’re all just adapting to some kind of new normal