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.
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.
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.
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.
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!
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.
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.
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.
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.