The birds don’t know. They’re singing as the sun climbs higher in the sky. Spring is continuing with its plans as various shrubs come out of hiding for Fashion Week, sporting pink and white and red buds.
The news outlets are encouraging us to call our grandparents – if only! – to find out what they used to do in their day, how they filled their free time at home, inside with family and outside, playing with their imaginations. Board games can be dusted off, families can reconnect and we can return to togetherness, the new separate variety.
What do you do if your family doesn’t like board games, won’t sit with you and play Scrabble (asking for a friend :)? Do you force family fun time or let teenagers default to video games and group chats? The prospect of being home together indefinitely looms and I suppose as with most things, you strike a balance, engage and disengage. There is food in the fridge and dry goods to tide us over, though I wasn’t early on amassing TP so we’ve got all of 14 rolls in the cupboard. I remind myself, stores will restock and besides, thou shalt not covet thy neighbor’s toilet paper supply.
That I even stopped to count tells me I’ve been watching too much news. My husband toggles between CNN and MSNBC, and the numbers of doctors and experts they interview and re-interview is staggering. Yet the news is largely the same: wash your hands the right way (I’ll spare you another set of instructions), stay home, practice social distancing. It will get worse before it gets better. What else can we do as we wait?
Italians are choosing to open their shutters and sing, tap tambourines and wave to one another across piazzas. The Whos down in Whoville had the same idea as they awoke to nothing yet realized they already had everything. It’s morning and those birds are still at it, and a light breeze ushers in their concert through my kitchen window. The sun streaks across the breakfast table as the house sleeps. The TV off dials up the sounds, the refrigerator rattling, the dog sleeping and cats moving through rooms sizing up the day.
The natural world is calling. While we can’t touch our eyes, nose and mouth, we can see and smell and taste the season, and let it touch us. We’ve all got tickets to our very own Broadway show outside ready to fill up our insides. Be well and enjoy the show.
Last Friday, I received the first of four chemo treatments I’ll get over the next two months. It’s strange to willingly drive to a place where you know they will inject you with poison that will drip through you for several hours, and that you’ll repeat this drill every three weeks over the course of your treatments. Yet it is this very poison that will help you. Sometimes we all need a complete detox, even if it’s a tox that’s doing the de-toxing.
I’m receiving this custom infusion by two very Special Agents C & D, initials of the chemical agents I’m receiving, Cyclophosphamide & Docetaxel, helpers, like Dr. Seuss’ little Cats A, B, C and so on. These agents are cleaning me through and through — picture Dow’s scrubbing bubbles, an infusion of Mr. Clean’s strength cut with Mrs. Meyers’ love.
I’ve been outfitted with a Dignicap, for which we must pay extra, which is a recently patented fitted head cap that fills up with cold water and then ice, down to 3 degrees Celsius, designed to protect your hair follicles, nearly freezing them from chemo’s harsh effects. Joe and I both agreed the name could use some improvement, because surely we all have dignity, with or without our hair? Still, I’ve had 56 years with mine, so I want it to stay if it will. To help the cap perform at its peak, the Dignicap folks suggest you wash your hair no more than once a week, so looks like Fridays are my hair washing day. I feel quite good except for the oily separating hair that is getting darker and flatter by the day from the lack of shampooing. It’s just hair I remind my vain self, yet I will continue to protect mine down to the last strand.
I should know in the next three weeks if I will experience typical shedding which is expected even using the Dignicap, or full on hair loss. I’ve already got a call into a Piedmont hair expert and based on the recent photo of me that I sent her, I’m a candidate for her synthetic wig titled “California Dreamin.” All I can picture is Carol Channing for some reason!
Added to the scalp chill during treatment is the ice water I’m soaking my fingers and toes in. Chemo can give you neuropathy, that tingling hands and feet are asleep sensation, and from what I’ve read, sometimes it hangs around long after treatments are over. One way to counter these effects is to, as with freezing your hair follicles, ice your fingers and toes during treatment. Thankfully just one of my two “medicines” creates this neuropathy, so the icing only occurs during that single hour after which I can hunker down under a blanket and warm up for the second hour of chemical drip.
This was my report from the infusion room yesterday: Got my cool cap on today and did the finger and toe icing (to prevent neuropathy). Then got under a warm blanket for another few hours with cooling cap. Feeling good. Thx for all the positive vibes. Got home around 4:30 and went on a half hour walk with Lucie. Joe and I are heading out on another walk. Glad to get it behind me. The cold cap seemed to work because when they took the cap off, my scalp literally had ice on it! So maybe it’ll work? Keeping fingers in ice 75 min was harder than the toes, bc I wore surgical gloves vs thin socks on my feet. Took some 30-45 sec breaks, though. Had a tiny bit of neuropothy in my left foot for like a minute a bit ago, so maybe that is typical, especially so soon after treatment. All in all a good day. 25% behind me!
And the second update the day after: I’m feeling fine esp given that two chemical agents dripped through me yesterday 🙂 They put you on steroids for three days to cut down on water retention and help an anti-nausea medicine work better. Feel quite energized today which is to be expected. Going to make pasta sauce and clean up around the house. Yesterday walked 1.5 hrs which felt good. Going to keep that up daily. Walked a brisk walk for an hour today. Super energized with the steroids. I’m supposed to begin to feel the effects tomorrow or Monday which last 3-5 days. I asked if there were big spikes with side effects that I could expect – like would I out-of-the-blue projectile vomit while grocery shopping? – they laughed and said it’s more like a flu-like malaise. But added everyone is different. With anti-nausea meds at the ready I don’t expect to have that. Then apparently I should feel back to normal until my next treatment on January 17, and I repeat this cycle through four treatments which end Feb 28. The hand and feet icing for 75 min was “challenging” but I took a few breaks. Hoping for zero neuropathy and today have had none. Also these drugs can make nail beds darken and sometimes I read that nails just peel off! Icing also keeps this at bay so I’ll definitely do it each time.
Someone asked me if chemo is loud. Maybe she was picturing wails from patients as harsh chemicals surge through them, or loud machines chugging to push sloggy liquids through the lines. It’s hard to describe, but it’s none of that. You’re not worried sitting there. Or I wasn’t. And no one looks sickly or anything. There is a quiet kindness in the air and the room is pleasant and airy with big windows offering views of Atlanta outside. Only discomfort was icing my fingers and toes but I took breaks. Otherwise you’re just sitting in these super comfy chairs that recline, nicer than any nail salon, with an IV in your arm. Joe brought his laptop and we went over some house ideas – talked about fireplace details. We brought lunch from home and ate it there. It was almost kind of fun, in a day date sort of way. When the place cleared out, they even let him hop in a comfy chair to stretch out.
It’s New Year’s Eve and I’m wondering if any effects will show up. So far there have been just a few: I could feel the start of a canker sore in my mouth but I’ve swished with baking soda and salt every day and thankfully nothing. These chemicals leave your digestive tract a bit sluggish, and mine has been no exception. My left eye lid has developed a sporadic twitch, most likely my body’s way of saying, wtf? I’m guessing my white blood cell counts are starting to drop as I’m told they will. Yet I’m not finding dry, itchy skin, bleeding gums and nausea, or the boatloads of other gruesome things the Internet promised. Goals for 2020: stop researching side effects on the Internet!
I’m thankful I’m still here and rolling into the new year with my Special Agents C and D, who will be with me through late February, after which they will take on new assignments. I am grateful and humbled and healthy, and I can’t tell you how much I appreciate all the love and support.
It’s no wonder I was given this B+ blood type, not only as a moniker of how I hope I am deep down, but as a benchmark of how I’d like to be, especially when meeting challenges.
It’s Friday the 13th, and for those who are superstitious, it’s a day when bad things happen. OR you could look at it differently as I am, as a day when IF something bad is going to happen, it might as well come out of hiding today and show itself and let ME decide if it is as bad as IT thinks it is. Taking the veil off scary situations and staring them in the face eye to eye gives you the power vs relinquishing it, gives you control and that optimism that you know is still there, that you know still shines brightly inside you.
These last few weeks I’ve been scared of a lot. Scared my health is going down the tubes, scared I won’t continue to be my usual bubbly energetic self, scared I’ll get chemo and feel and look awful. Today, this Friday the 13th, my doctor’s office called me and I learned that I will need chemo after all to eliminate any potentially lingering not benigns, which they say are gone, but so we can ensure they stay that way.
I’d like to announce today that I’m done wallowing in all this, so please don’t you. I’m beginning a period I’d like to call my drama drought. I’m rolling up my sleeves and getting to work. All the worry and whining will give way to smiling and winning. And it’s Christmas time for crying out loud! I’ve got so much to do and good things on my plate.
I imagine I might feel kind of lousy after I begin this treatment (dates tbd after I meet with my oncologist one week from today), and while my beautiful hair might need to go dormant during this winter, like a lovely zoysia lawn does, I am still here. I’m as me as I ever was, and I am going to move through all of this happy and healthy, and with boatloads of “Be Positive” bright red blood coursing through me.
Just my update for today. I like thoroughness and this Friday the 13th, while a smidge disappointing, did its part, lived up to its reputation, delivering a full-on badass Friday the 13th. But just so we’re clear, I’m the bigger badass, so there.
I’ll close with Happy Friday, because it still is and I still am.
Each morning, I go down the hall and descend the 22 stairs. Another hall, then the dining room and kitchen. I turn the overhead light on, light over the sink on, and then the stove light. Check. Check. Check. Fill tea kettle and begin boiling water for coffee. A pilot flipping switches, warming up the engines.
The morning’s hamster wheel turns again – making breakfast, lunch (ok, you shamers, I’m up early and have the time, so I make the lunch), feed the pets and the whirl of the morning is over. Everyone is gone and it’s me again, dishes emptied and ready for reloading. Dog walk ahead, rental house tenant details, car emissions – will the old car pass? I’m busy and bored, gas and brake pressed together. My brakes are on and I can’t convince my foot to let go so I can roll. Don’t want to hit something, but I’m afraid I’ve already hit a wall. They say fear is excitement with the brakes on.
PO: The post office in the town next to mine gets it. Three stations, three big hearts, all lifting you up. It’s an old timey brick building. No Saturday hours. Old ideals inside. A place that makes us each better. They know me, ask about my kids, take my trash even – used up stamp sheets, sticky backs of priority mail labels. They’d probably take your wad of chewed gum if you asked. Shipping can get complicated, and these folks always suggest the best timing and pricing. And when the lady postmaster sneezes, we collectively reply in hushed, loving church tones, “Bless you.”
Dry cleaner: This place and their clay tile roof building has been around forever. The guys inside, several of them brothers, know your name and use it. If they’re busy or you are, you can pay later when you return next. They have a sign by the register to discourage cell phone use that is handwritten and refreshingly kind and polite. We’re all better inside there on any day, busy holidays, heat of summer, etc. Inside, there’s a kind word. A smile.
Mechanic: You’re understandably frustrated the car is stalling, failing you. You’ve got better things to do and need a car to do them with. This place is tiny but full of understanding faces. The chairs are ripped, but you sit down and stay a while, laughing over automotive frustrations, talking of friends you share and the places you’re from and have travelled. The stress melts because people listen. You listen. If only for a moment, the car costs, the Uber you need to get home and the things you left undone can simply wait.
Pizza: Your local pizzeria is authentic pizza hand crafted by good people. Everything on the menu is a homerun. The staff is familiar and there’s a positive vibe buzzing inside. It employed your son years ago when he was in high school, and its owner supports the local schools, even coming in early once to make dozens of pizzas for your other son’s soccer team. Who does that? Pizza’s goodness on multiple levels.
These simple errands bring life lessons. They rip open an ordinary day and inject it with a spirit that shines through you. Something about crossing that threshold, and you’re inside a safe space, a place where you go back to being your best self, stripped of competition, callousness, impatience. Here you have time to engage, spread a little warmth. Simple exchanges find you paying it forward as you head back out into the world, imbued with your best you that you want to share. You drive home in traffic with terrible drivers, the fuel light comes on and your phone has one bar. It’s okay for a while, but these bits, these little nuisances inevitably return, chipping away at your joy and take you back where you were before. You can always return to these places to refuel, but hopefully you’ll learn one day how to fill yourself up.
A rare recent Father’s Day had us eating brunch in Inman Park in Atlanta, three generations together, grandpa, father and grandson, sitting across from one another, countless memories between them, their own childhoods and those of their children, and then flying to New York to see our other son. Two boys, two cities, one dad who adores them both. My sons, my two hearts walking around, surprise me, invite me to wrestle with my own discomfort, and teach me about boundaries, trust and faith. To fly six states away for just a couple of days is to trust that love will seep in, do its thing and wash a familiar comfort over you, over all of us. The promise of that conversation over dinner, familiar smile and renewed connection is priceless.
Yoga: “Visualize your jaw unclenching,” she instructed. So much for relaxing, that visual instead sent me to nightguards, root canals and crowns, decades of dental costs. I can’t help it, I’m English, I got the bad teeth. That morning, I drove the half hour to the Y where I unrolled my mat to practice before my favorite yoga teacher who it turns out wasn’t there that day. Instead, this broad-shouldered brown-haired girl led the class. I shouldn’t have been all judge-y, arms crossed and missing my teacher, as this instructor was kind and helpful, moving around the room correcting folks who got it wrong, me initially and later, me again. She wore a white t-shirt with graphics on it, maybe from Lake Burton or a sorority or a charity run, and Pullman brown yoga pants she could have lifted off a UPS truck. I’ll bet she can maneuver a ski boat with panache, settle into a slip at Hall’s Boathouse on Lake Rabun, and clean her own catch right there on the dock. She’s probably equally comfortable at the symphony, speaks several languages and knows the best BBQ joints, I’ll bet preferring North Carolina vinegary ones. She surprised me with her great music, too, starting with a lively song I recognized but couldn’t place, then moved into Adele 21, and REM, and even Sade’s By Your Side, that sexy song Richard and Samantha danced to in the Sex in the City pool scene. She must be hooked on that show, too.
She didn’t have that syrupy sweet voice you get sometimes, those instructors who are trying to relax you, so much so they almost put you in a trance, as if they’ve warmed your bottle and turned down your crib sheet. She did close the blinds in our room, darkening the space for her newborns down for their nap, but used a matter of fact adult tone which worked. It let us realize we are nurturing ourselves, not the YMCA doing all the heavy lifting. She’s creating the space, the framework, the movements, but it is up to us to find our own kind and gentle voice for ourselves.
Physical Therapy: “Lie on your left side,” she instructed. Uh oh, here we go again, time to dry needle the hip. Like putting your finger in a socket or having your teeth drilled, dry needling literally gets on your nerves, sending jarring reverberations up and down your body, sorting out the spots that most need it. Waiting for her to begin, I focused on the bright exercise balls in the distance, zoning out to Toni Tennille’s voice, “I will, I will, I will, ahh-ahhh-I’ll be there to share for-e-ver,” one of many 70s gems piped into the place. I pictured her bowl cut, bangs and hair curled under in uniform Plasti-Coil precision, a curvy cascade matching her large round eyes and mouth. Was it a curling iron or hot rollers that gave her that look? In spite of their sweet glances and lyrics, love couldn’t keep The Captain and Tennille together, and after nearly 40 years, they divorced. Sadly, just this past year, the Captain, Daryl Dragon, died, Tennille by his side. Thank God my physical therapist can’t see into my monkey mind, because surely she’d fail to understand this detailed tangent, but one song, one note, can send you places.
I have far to go so that my weak hip and collapsed foot arch don’t bench me, wrecking my ability to run pain free. I’ll have to do the homework, draping myself over an exercise ball, sucking in my gut and pressing my feet behind me, working my glutes and resolve to get strong again. That ball which I ordered last week still sits in our playroom waiting for me as I scrub the colander, slick with spaghetti residue.
My recent birthday carb loading – dinner and dessert, then dessert again (Alon’s midnight cake afterwards at home) – lasted several days. That pasta I made yesterday, filled with my favorite things – shrimp, red pepper, onion, garlic, spinach, tomatoes, corn, all doused in a lemony garlic wine goodness — has left me sluggish. Despite loving the hefty portion I inhaled, I’m reminded what my gyn advised, “Carbs are not your friend.”
Not sure why I’m so restless or what’s happened exactly, but likely it’s a classic case of smack dab in the middle aged-ness. I used to believe I’d beat the odds of getting that mid-life middle, that I wouldn’t hobble when I got out of bed in the morning, and that my skin tone would stay even, and not spotty like my grandmother’s. Mostly, I assumed I’d wise up, find work that would fill me up, harnessing my energy, creativity and enthusiasm. I’m realizing I’m still at that same fork in the road obsessed with getting my direction right. Or is it left?
And then I turn on the sobering news of late and I feel completely self-absorbed, shallow and in need of a mindset makeover. I’m still alive, aren’t I? It’s just that I hardly recognize myself some days, here at home with my ordinary puttering rhythm, going on almost two years now. There’s that feeling I haven’t done much yet – I’ve barely scratched the surface — and I’m sending myself regular reminders that I’m supposed to be farther along, yet other reminders that I ought to sit with this a bit, right here in this moment. I guess the instruction is take off the brakes and give yourself a break.
Finally, there are these three: brilliant writers and thinkers and strugglers, each chipping away like all of us are, who’ve shared their personal, yet universal insights, a few favorites I’m sharing, too:
The depth of the feeling continued to surprise and threaten me, but each time it hit again and I bore it… I would discover that it hadn’t washed me away. –Anne Lamott
We can choose courage or we can choose comfort, but we can’t have both. Not at the same time.”–Brene Brown
“The women I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong and they handled it. They handled it a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes.”– Elizabeth Gilbert
These are days
These are days you’ll remember
Never before and never since
Will the whole world be warm as this
And as you feel it
You’ll know it’s true
That you are blessed and lucky
It’s true that you
Are touched by something
That will grow in you, in you
These are days you’ll remember
When May is rushing over you with desire
To be part of the miracles you see in every hour
You’ll know it’s true that you are blessed and lucky
It’s true that you
Are touched by something
That will grow and bloom in you
These are days
These are the days you might fill with laughter until you break
These days you might feel a shaft of light
Make its way across your face
And when you do you’ll know how it was meant to be
See the signs and know their meaning
You’ll know how it was meant to be
Hear the signs and know they’re speaking to you, to you