My grandparents moved down to Vero Beach, Fla. years ago, leaving behind their lives as New Englanders to become Floridians. My grandmother’s tanned wrinkly knees, breezy summer shifts with a Kleenex tucked in one sleeve, and her wide brimmed straw beach hat are as clear to me today as they were each year we visited. She and my grandfather walked the beach many Sunday mornings after their strong and stout black coffee, sectioned Indian River grapefruit halves and English muffins spread with butter and apple jelly, and of course after breakfast was cleared and the dishwasher loaded. I don’t know if they chose to walk left or right, left toward the big pier that extended way out into the water or right toward the swimming hole with the big step down that rose up to a sandbar where the water suddenly was ankle deep. Either way, they found their rhythm of how they wanted their Sundays to go and they kept to it religiously.
Some days I don’t know what I’ll get, what mood I’ll be in, how I’ll perceive the day ahead, but as my sister and I mused, you just wake up and walk into whatever is waiting. Yesterday was a collision of too much: a toxic mix of worry, restlessness and overwhelm, and the only fix was to get out of the house. These days nowhere feels safe, not even home.
You just wake up and walk into whatever is waiting
My son who today was supposed to move into his college dorm recently tested positive for Covid. He’d spent some time with a friend who later learned he had it, and so my son got it too. Thankfully he had just three days of mild headaches after which his symptoms disappeared. His doctor said per CDC Guidelines he can end his quarantine ten days after his first symptoms appeared, which will be Thursday of next week, so thankfully he can move into his dorm then in time for classes, two thirds of them virtual, which begin the following Monday. On Friday, my husband and I drove in separate cars the 45-60 minute drive to Newnan, Ga. where we both took drive-by rapid Covid tests and learned we’re each negative. Despite these positive negative results, you can still analyze symptoms, phantom and otherwise, to death and believe me, we have. Joe thought maybe his throat felt heavy and I decided my sense of smell was fading, waking each morning to sniff the vanilla extract, perfume spray bottle or jar of peanut butter, the latter rather unpleasant pre-coffee. In reality, we don’t have symptoms and each day we wake up without them is in anyone’s book a small victory.
Thank God for large drafty houses. We are living in separate rooms and I’ve chosen to be on an air mattress in our parlor, and am noticing that the early light breaking through these 1880s bay windows is heavenly. I’ve taken over the downstairs bathroom and after eleven years here have finally broken in its enormous claw foot tub. Those quiet morning baths, that southwest facing bathroom, with dappled light streaming through its two windows, has become church for me. There’s a fireplace opposite the tub and when we’re through renovating this glorious place, when these miserable Covid times are behind us, we’ll enjoy decadent fireside soaks.
The early light breaking through these 1880s bay windows is heavenly.
For months now the world has been consumed with this virus, and knowing it’s here in my house walking around inside in the form of my son has left me itching to stay away, unnatural for a mother to self-assign to home’s far recesses or even further, outside them. It’s both ironic and unfortunate that these last few days with him home I’m having to stay more separate than ever. Maybe like quickly ripping off a Band-aid in lieu of its slow painful removal, the universe is making our separation easier by having it abruptly start now? Certainly not intending to make him feel like a leper – and he doesn’t – I can’t cut any corners, not when doctors look at me with their knowing eyes and tell me that early results show that cancer survivors don’t seem to fare well with Covid. Excuse me? Not even trying to define “well,” just trying to stay alive. We all are.
It’s unnatural for a mother to self-assign to home’s far recesses.
No circle in these concentric circles in my inside world and outside it feels exactly safe, yet home I am realizing is where I am. I feel strong and can move and walk miles and miles. Yesterday I left and with mask in hand and on face whenever there was anyone in sight, and with no particular destination in mind, wandered all around Decatur – through the cemetery, residential neighborhoods and downtown. Walked four miles and some change and with AirPods tucked inside my ears, strutted straight out of a ‘70s music video, moving through the entire Billy Joel’s Turnstiles album and on into ELO’s greatest hits, finding comfort in something familiar from a simpler more predictable time.
Joel’s Summer, Highland Falls is one of my favorites. Fast flitting piano juxtaposed with a ribbon of melodic rambling vocals felt perfect. He wrote it after he’d returned to New York after many years away when he was living outside the city near, you guessed it, Highland Falls. The song speaks to the highs and lows of life, it’s either sadness or euphoria. We are always what our situations hand us. Perhaps we don’t fulfill each other’s fantasies. We stand upon the ledges of our lives with our respective similarities.
It’s Sunday and as I lie here on my air mattress, now slightly lumpy from hours of air slowly seeping out, I clutch my Target mug, strangely comforting albeit mass-produced, with its colorful floral “S” initial and shiny gold handle, filled with that sacred first and only cup of coffee. I’m soaking it all in, this day, this life, the changes that are coming. This moment feels like my church, and it’s offering lessons and bringing comfort. With so many unable to return to their own churches, I am wondering where or how are you finding your church, your soothing Sundays?
I’m soaking it all in, this day, this life, the changes that are coming.
Growing up, we were required to attend church every Sunday, and unlike my grandparents, my parents didn’t stray from that traditional script and wander into nature on Sundays for nourishment. I think we need to wander there in order to return right back home, back to ourselves.
Stay safe and look for love and comfort wherever you can. It’s still there under all the rubble, which increasingly will clear away. I’m leaving you with music from a Sunday I will always keep close to my heart. I was in New York with a dear girlfriend and as we walked through Central Park, this haunting celestial music pulled us in, blanketing us all and moving me to tears. Amazing Grace.
I’ve completed treatment. The honeymoon is over. That warm swirl of homemade delivered soups, little notes and calls, and attentive doctors and nurses propping up pillows, encouraging me that I’m doing great is now behind me. Lumpectomy done. Check. Chemo over. Check. Radiation complete. Check. Now what?
I’ve had people ask me that same question. They look at me now as if I have some answers because, well, you know, I must be an expert on cancer. Wow I said it twice, did you notice? Once in the title and once in the text. Maybe I’ve reached that stage of grief they call acceptance? I hate saying the word because I don’t feel like a member of that club and the word wreaks of death looming, so it must be w h i s p e r e d or typed in italics. My thinking has been since it was enough stress to have had it, must I now say the word too? I’ve found there are plenty of ways to circumvent saying it.
Have you been seeing all those commercials for cancer treatment on TV? Maybe you don’t notice them, but there’s a preponderance. A soft female voice delivers the message for things like Ibrance, that promises you can now live in the moment even if you have metastatic breast cancer. Thankfully I didn’t have that type; mine was isolated to one tumor in one breast. But still, these ads call out to you, stop you in your tracks, flood you back and you always remember. Then come the warnings, also whispered: Ibrance has been found to shrink tumors in over half of patients. Ibrance can cause low white counts and serious infections that can lead to death. Be in your moment. Ask your doctor about Ibrance.
I’m afraid I don’t have any insights into why this happened to me, though in many respects I’m not completely surprised it did. My stress had been escalating – the same crap, the familiar loop that runs round and round in our head that we can hyper focus on but know we shouldn’t – and I’d been rather slack about healthy eating and drinking, and still without any meaningful sustained exercise regimen. The perfect storm where something had to give, and part of me is glad it did. You can’t sustain that kind of adrenaline indefinitely.
In all my fifty-six years, I’ve known just two people who’ve had this. One was a neighbor in an apartment complex I lived in in my early 20s and the other, a colleague of my husband’s. In the case of my neighbor, I don’t recall her specific situation, and only now do I realize that each person’s unique experience varies considerably. You can have cells that leave your breast and travel other places via your lymph nodes, bringing more unpredictability as to whether they can be wiped out, or you can have more destructive kinds, such as triple negative, a highly aggressive variety which can be hard to treat because its food source is so unclear. I don’t know the kind my neighbor had. I do know she was a smoker. Did that weigh in? There is no telling. I remember taking great pleasure when ordering her flowers after she got the all clear. I also remember her dying less than two years later.
I was heartbroken, of course, but dumbfounded too – didn’t they say she was cancer free? Evidently, it’s not that simple and clean cut. Perhaps hers seeped into her lymphatic system destroying other organs or was more aggressive from the get-go than doctors initially thought. I will never know, but I felt so let down, so gypped, having been so overjoyed, as she was, that it was finally over. It doesn’t feel good, this unusual, premature and unfortunate ending. Like being a bridesmaid in a wedding where the couple later divorces, but of course worse. The other woman who had “it” best I can tell has resumed a fully normal and healthy life, thankfully. I don’t know her well and so am not inclined to ask about her story. I’m not sure she even knows mine. The important take away is after all this, if you are thriving, then you are thriving.
You can’t sustain that kind of adrenaline indefinitely.
I don’t have a crystal ball for my own future, but at least I know more than I once did. That whispered term that I must type in italics, “metastatic breast cancer”, refers to cancer which started in your breast and later (typically within five years) pops up somewhere else – a game of Whac-A-Mole gone terribly wrong. After some women complete their treatment and go about ringing bells and running victory laps around infusion chairs, sometimes when they least expect it, it returns. When it does, I’m told it’s not as likely to show up in that same breast or even in the other one. The more typical scenario is it shows up elsewhere, such as in your liver or bones, which is called a “distant” recurrence, far from the initial source (breast). Unfortunately, even if yours was a low stage to begin with (mine was Stage 2), all distant recurrences appear as Stage 4 and are called metastatic because the cancer has metastasized, left the breast and spread to other organs. Many women die from this, yet some can live with it, but they must be all-the-more vigilant with extra therapies and medications and go forth with the real fear that they are never quite done. But are any of us who’ve had breast cancer? Can we ever lose the brand that’s stamped on us in our own minds and in others’?
When I first sat down with my Piedmont Hospital oncologist (hereafter, “Piedmont”) who had reviewed all my scans – mammograms, ultrasounds, bilateral MRI (both breasts), labs (bloodwork), pathology reports (analyzing the types of cancer cells I had) – he was very calm, like he’d done this a thousand times. Of course he had. He told my husband and me he was going to suggest a course of treatment and he used the analogy that the surgery I’d completed (the lumpectomy) was the cure and the follow on was the insurance. I wondered if everyone who sat before him got this same spiel, but it seemed as if this insurance parallel was one at which he’d just arrived, customized exclusively for me. He said it’s like he’s our insurance salesman, and he’s going to recommend the fullest coverage possible, which for me translated to four rounds of chemotherapy plus radiation. In addition to his cleanly scrawled regimen on the pad of paper between us, he scribbled percentages. If you’ve strayed by now, folks, come on back, as we’re talking survival here. I learned my odds are 80/20, an 80% chance this will not recur and a 20% chance it could. My eyes welled up hearing this because it sounded worse than I expected. I assumed since cancer hadn’t leaked into my lymph nodes we had a simple guaranteed solution on our hands: scoop it out with a lumpectomy, get your chemo and radiation and off you go, all done. An 80/20 scenario didn’t come with such guarantee. However since then, I’ve thought about it in a different way; I had to. When your weather report forecasts a 20% chance of rain, do you grab an umbrella? I know I don’t. I feel better now. Hope that helps you?
Did You Know? Lumpectomy + Radiation = Same Effectiveness as Masectomy
So I rolled on and finished up chemo and after a month-long break when it was time for radiation to begin, I sat before a different doctor. Piedmont suggested we schedule radiation at Emory so it’s convenient (Emory is just a few miles from my home) since I’d be going 21 days, consecutive weekdays with weekends off. During our 45-minute wait to see the radiation oncologist to whom we’d been referred, my husband and I read all the literature given to us, including this doctor’s CV. She graduated magna cum laude from Harvard University with a bachelor’s degree in biology, received her MD from Stanford University and completed her residency in radiation oncology at The University of Texas MD Anderson Cancer Center in Houston. Whoa! Harvard AND magna cum laude (AND Stanford AND MD Anderson)? She will henceforward simply be referred to as “Harvard.” It turns out Harvard and two of her esteemed colleagues had already reviewed my case in detail, poring over labs, scans, pathology reports etc., before she landed on what she decided would be my best course of treatment: 21 rounds of radiation – 16 over the whole breast followed by five targeting the cavity where the tumor, henceforth “Coward” had been lurking.
Like a child playing mom against dad, I of course had to ask Harvard the question: “Piedmont tells me I have an 80/20 chance. Do you agree with this?” She thought for what was a briefer moment than I expected and said, hesitantly, “While I don’t want to overstep your Piedmont doctor… (can you see my enormous smile forming?), I think you have much better chances.” Me, eyes wide open leaning in closer, “How much better?” “Over 90%” (or less than 10% however your brain processes it), she replied. Incredulous, thrilled, giddy all at once, I thought to myself, seriously? I would ask again at a few other appointments, just in case Covid-19 distractions and her full patient load undermined her ability to clearly think and call it correctly, and each time I got the same fabulous grade.
Unrelated but perhaps related, I am a twin. My brother, Benjamin Redfield Woody, died just a few days after birth from hyaline membrane disease (a breathing disorder which today would have been treatable). I can’t report feeling any magic force within me connecting us. Of course, when I have bad days and feel like something’s missing, I laugh to myself because something is missing, my other half, my twin. Those twins who feel the same things yet live far apart in different states or read the other’s mind aren’t me, though with my twin not being here, it’s not exactly a controlled experiment. But how about in the case of an amputated limb? I hear some amputees still have the urge to scratch that leg they no longer have. I wouldn’t expect if any of my limbs were cut off, I’d have any ghost limb experiences; mine would simply be gone. Even when I was pregnant, I could never answer those commonly recurring questions: When is the baby coming and do you think it’s a boy or a girl?
I don’t think being pregnant or having a twin or getting cancer magically renders you capable of predicting outcomes, bestowing on you a mysterious celestial insight others didn’t get. For me, getting cancer was initially of course a big shock, but then it became just a lot more doctors appointments and uncertainty and days you don’t feel great. A lot more. I never felt as if I’m knocking on death’s door, but have wondered how big my tumor would be now had I not shut down its shenanigans. I don’t feel like a warrior with pink boxing gloves who has kicked cancer’s ass. I do feel I was a good patient, ever listening and thinking and acting without delay in my best interest. I don’t want to tell cancer fuck you, or join in a big pink march. I believe it’s now gone so there’s no tumor to cuss out anyway. Instead it feels quieter and gentler, just between my body and me. A malicious foreign thing grew inside me and I kept playing its game of hide and seek until I found it. I didn’t intend to start this game, but that’s where my mom gets some credit too.
As I’m inclined to do, I analyzed and over-analyzed this situation a lot (I won’t say analyzed it “to death” because this is of course what we’re trying to avoid, being cancer and all). I think it was a guardian angel or God or my mom (or maybe they’re all the same or decided to merge for this one mission?) who was nudging me that October afternoon to feel both sides. Because who does that three months after a “normal” mammogram? Assuming it was my mom, isn’t it interesting that my treatment was exactly 4 rounds of chemotherapy and 21 rounds of radiation, since her birthday is April 21 (4/21). Who other but a mom to push you out of the way when a train is about to hit you head on? Totally my mom’s doing.
All this said, I am inclined to go with Harvard. While Piedmont has been great and still is, how can you not opt for the better prognosis? I mean it’s Harvard talking, and you can be sure I’m listening.
These days when people see me and ask how I’m feeling, I know what they are probably thinking: Has the cancer come back? Do you think it will? Sorry to report folks, but hell if I know, your guess is as good as mine. Going forward, all I know is I’ll be eating better, exercising more, stressing less – things we all should be doing, but now me more than ever.
My tumor was labeled as 100% ER positive, which means estrogen was the only thing it consumed to stay in the game. If you sweep up every estrogen crumb and wipe down the cupboard evermore, presumably Coward’s got nothing to eat and therefore can’t find any reason to return. Piedmont has me on a daily estrogen blocker pill (Arimidex), to ensure there’s nothing to snack on should the malignant munchies strike. I’m told such fabulous things as dairy and red meat and alcohol, which my cancer loved, can elevate my estrogen levels, and getting lots of exercise will oxygenate my blood, which cancer hates. So I’ve dropped red meat and most dairy (except parmesan, you can stay) and alcohol is minimal and very occasional. Recently I’ve taken to Stiegl’s grapefruit Radlers, just 2% alcohol and super refreshing, and I am moving more, or at least on days I’m not, I’m thinking about it, which I didn’t before. I’m trying to do the granola-with-flax-and-chia-seeds-splashed-with-almond-milk thing for breakfast, but when you’ve got a Publix puffy-sugar-studded-cherry-filled-triangle pastry staring back at you that your kids threw in the grocery cart, you don’t always make good choices. I’ve cheated and splurged on sugar, eaten potato chips, had several exceedingly delicious bites of bacon, but realize each day is a reset and more often than not, I’m leaning into pretty good choices.
I’m to continue taking my estrogen blocker pill every morning for the next ten years. It’s a bonafide treatment and after chemo and radiation, this third treatment will be the charm. It’s tiny, yet powerful, the same size of the birth control pill I used to take and the Synthroid I do now. Aside from its intended job, Arimidex also might make my joints ache. However, all I can report two months in is my right hand ring finger feels a little swollen and stiff. No big deal. To its discredit, this pill does plunge you into a menopausal sweaty never-can-get-the-temperature-right mode. Throw summer heat on top of it all and let’s just say showers are my friend.
Every three months I’ll go back and see Piedmont and he will do labs to check for any abnormalities. He said at these quarterly appointments he will just talk with me and look me over. He doesn’t believe in scans – calls them old school – but I believe in him. He’s my insurance guy and I’ll be damned if I’m going to miss a premium payment.
The good news is my hair is returning. I feel like Navan Johnson in the movie, The Jerk, and in lieu of Steve Martin’s character screaming, “The new phone book’s here, the new phone book’s here!”, I’m screaming, “The new hair’s here, the new hair’s here!” thrilled at the new crop coming in, daily checking for more.
Like the fescue that’s managed to push its way through the packed and cracked Georgia red clay in our back yard, bulldozed from the renovation underway, my hair is definitely coming back. I don’t see any signs of a grey curly brillo pad emerging as some warned, but instead see just the same dirty blonde I’m-in-my-mid-50s hair from before. I’ve got somewhat of a mullet going right now with the formerly bald sides filling in where the chemo cold cap didn’t fit well. My longer hair, which hasn’t been cut since October, still hangs down straggly, the last four inches or so blonde from last summer’s foils. However, in a baseball cap, no one’s the wiser. Why should everyone know? It’s a heavy enough burden for me to carry, so why sling it on others’ backs? As for the hair, I’ll even it up at some point, but it’s so nice and feels warmer and is a delight to see and feel my former partly bald scalp filling in. I’m heartened by this physical sign that I am healing and my cells are happily busy at work churning out new good things instead of just fighting off tumors and weathering chemo.
I’d like to say this is my last post about all this, but assuming it doesn’t return, and I am wholeheartedly making this assumption, I suspect I’ll still talk about it some more. My surgery date was November 21, so after each November 21 that goes by I will breathe an increasingly bigger sigh of relief. After five years, the chances are far slimmer for a recurrence, and after ten, I will be “cured,” and Piedmont says I won’t need to see him anymore. This experience is now forever with me and a part of me. I hate that it showed up but love that it is gone. I love myself for pushing for answers, pushing through treatments and pushing for something better now that I’m on the other side. And if you’re still here after all these words, I love you for sticking with me. A big love fest all around. And just so we’re clear, Coward, you’re not invited.
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.
Friday I did my big bell ringing victory lap after chemo and was feeling all high and mighty. And then Tuesday hit. Right on time after the 72 hour coverage of anti-nausea meds from Friday’s treatment. I’ve never had it hit before three days post treatment, so why now? I’ll tell you why. These nasty chemicals want you to experience every ounce of this crazy ride, and despite being on your last treatment when you’d think it’s finally time for a break, they will hold good on that promise. So Tuesday was nausea day. As in vomiting 12+ times. All day I focused on trying to feel better. Then the next day I forgot to swish and the famous chemo mouth sores you’ve probably heard about started to happen. Oh, no you don’t, and I swished multiple times and now I think I’ve staved off those from coming. It’s a crazy game where you are trying to outrun these little annoyances and get the skin you live in to stop aggravating you. You have to wait it out and let time do its thing, yet you want it over with. Good luck.
Our construction we’ve been planning for years has been on hold due to the many weeks of rain. Our cellar looks like a retention pond. We’ve picked the brick we will want surrounding the cellar and around the new fireplaces and are ready to go. Waiting on the weather and a good stretch of days that make starting up again worthwhile. We’re so ready yet must wait it out. I worry the renovation will drag on and then I laugh at my worry. We’ve started at least, haven’t we? That is huge. A truck pulled in the drive today and I thought wow, maybe they’ll work in the rain. But alas, it was the porta potty truck changing out the toilet. Still, progress with a clean toilet. Maybe the news will spread that the toilet is brand spankin’ new and we will have workers’ trucks again crowding the driveway. The sun has to come out again. It always does.
The sun has to come out again. It always does.
My son has long finished his college applications and was deferred by his first choice. He’s got another week of waiting until he knows. Big decisions. What town he will live in, will he be in state or out? All that work, the essays, the SATs the applications and then the endless waiting. I tell him just a little longer, but it’s no help. You just have to ride it out. He’s gotten several acceptances, so he has places to go, good places. But still, he is waiting for the answer he wants so he can get on with things. Time can be cruel. And so we wait.
My other son already in college in New York has applied for a post associate degree major and is waiting to hear. He worked hard and pulled together an impressive portfolio and is hopeful he can dive into this new course of study this fall. He’s plenty busy with classes and work and friends but not knowing if he’s accepted in this major is unnerving. He’s got another week until he hears. Time will tell.
Isn’t all of life a waiting game? Not much you can do really except maybe distract yourself and hope the calendar moves along, which it always does. But in between there is time with people and pets and work and play and delicious food. My sister and niece flew from Chicago to be with me during my last treatment. Such a treat to have the house full of girls and constant random conversation. We ate out and then ate leftovers and out again and more leftovers. Lingered over our morning coffee and laughed and shared and walked and shopped.
I’m waiting for the three week mark to hit when my body will no longer get another chemical blast. It must be thinking dear God, how many more days til we do this again, and I wish I could reassure it that this hell is done and it’s all about healing and strength going forward. Want to scream it to my hair follicles too who also aren’t sure what is going on. They’re still getting their weekly shampoo and holding on to the front and back of my scalp, but the sides just couldn’t fully hang in from a poorly fitting cold cap. Odd for sure, and cold when the wind blows, but under a cap it just looks like normal, albeit scant, hair.
In a robe for two days with my Pedialyte cocktail, I couldn’t decide today what foods would taste good. So with no planning and few groceries, I grazed. Oatmeal and banana, frozen Whole Foods bean and cheese burrito, bone broth with vegetables that the same angelic Pedialyte-delivering friend made, and then it went downhill from there. I glanced in the refrigerator door and there they were: Keebler fudge sticks. I’ll just grab one of those. What’s the harm? Then I had another. Those flesh colored chocolate dunked cream filled innocent sticks. Divine. Like I used to eat at my grandmother’s at her apartment off Peachtree Street. Always kept in the refrigerator. Later my husband came home and as I hadn’t shopped we had breakfast for dinner. He made bacon. I haven’t had a slice since November and I pinched a little off one. They were well done and cooked in the oven. Crispy, no fat, the no nitrite kind. Innocent, right? So good. Then I had a whole piece. Oh my, the food of the gods. I can’t love stuff like this but then I remembered my oncology nurse said once, if during treatment you want mac ‘n cheese, just have it. She didn’t mention what to do when the urge for fudge sticks or bacon strikes. I’ve decided no more fudge sticks and as for the bacon thing, maybe once a month I might have a slice. Surely that frequency can’t kill me? I just didn’t want to love it so much, but it was the best I’ve had. Like ever.
As I move out of self-soothing and into Friday shampooing, I hope this bizarre post chemo taste leaves my mouth and the sunshine that’s ahead will propel me back on walks and into enjoying large kale salads. I want my taste buds to really love what’s best for me and try to put the bacon and other stuff on the back burner and into the very occasional category. But you just reach for nostalgic comfort food when you are trying to feel better. I tell myself it’s ok. And so I wait to feel fully better and then once I am, radiation will begin. The calendar is indeed moving.
Last month I found my hands cupping my breasts, first the right and then the left. Hold on now, just so we’re clear, this is not one of those stories. This one’s different, but stay with me. They were unusually smooth, nothing like a few years ago, pre-menopause, when I used to do these self-exams, parsing through the mealy tissue with clockwise two finger circles. I have what’s termed “dense breasts” which I can only describe as the consistency of pea gravel you’d run through a Cuisinart, so turning over any potential bad stones always seemed next to impossible, so I stopped, but kept up my annual mammograms.
Over the years I’ve been religious with all my health checkups, occasionally even calling doctors early to remind them it’s time for me to come in. This year was no different, with a gyn annual visit in February that included a breast exam, and a mammogram in July. For that mammogram, I took my usual lucky seat next to the aquarium in the breast health center waiting room, and once called in, got it done. They called me back days later needing a “second look.” All you can think with a call back is holy shit. The days drag when you’re waiting for the MyChart “all clear” and the letter that follows which you’ll of course save in a file forever. Eventually I was cleared and declared “normal” and looked forward to another year’s stay of execution.
Fast forward to October when I was lying on my bed and for some reason decided to feel both sides thoroughly, almost marveling at their teardrop symmetry and softness, delicately balanced above my rib cage. All that pea gravel now gone after menopause, this texture was smooth. Except, wait? Is that something on my left side? Hmmm. More rotations, more checking the other side. Yep, this is a little something, and I’ll be getting that checked, yet felt fine about it since the July all clear.
I called my doctor the next day and got in several days later. As I sat in the examining room in my paper Flying Nun gown, not nearly as adorable and carefree as Sally Field, I couldn’t help but wonder, wtf? My doctor felt it too, and looked a little puzzled, but reassured me it’s probably nothing, recalling July’s normal results.
Next on the agenda was another mammogram, this time 3-D, followed by an ultrasound that same day. As I checked in, the woman in reception, excited about her bouquet of pink pens for the taking, reminded me that I can keep the pen. I was reluctant, but she extended the pen toward me anyway and smiled, waiting it out. My mind went to the Seinfeld episode when Jack insists to Jerry, “Take the pen!!” I took the pen and tossed it in my purse hoping it’s hot pink malignant ink wouldn’t leak everywhere.
I set off to change in their dressing room, passing the normal waiting area and on to a room deeper in the facility, with nicer snacks and cushier chairs, certainly not intending to, but definitely amping up my anxiety. I refused to enjoy an apple juice or the Milano cookies set out in this waiting area because I was a regular in the first room, and despite my assignment to this one, I wasn’t going to drink their Kool-Aid.
The radiologist viewing my ultrasound asked me if I’d experienced trauma to my left breast, or did I have diabetes? My research later revealed that both conditions can resemble a malignancy, and befuddled, I nodded no. Though I did fall in New York skating in Bryant Park a few years back and cowered off the ice to heal only to go back on in a half hour and do it again. Skaters don’t just keep going when a fifty something woman falls; instead there’s this unspoken “old lady down” alert and they rush over and help you up and off the rink so the skating can continue without the distraction. And then there was last year when I was walking my dog on a perfectly fine fall afternoon and tripped on an enormous acorn in my path. Down I went and off went the skin on my knees replaced with sticky bloody ovals on each knee cap, like a kid’s, but wrinkly.
The radiologist said her share of hmmm-s, and I’m concerned-s, and a biopsy was scheduled in a few days. The biopsy radiologist was comforting, imagine Faith Hill in a lab coat, with a velvety voice to match. She walked me through all the steps, numbing your breast, placing a hollow needle inside and pulling out a sample of the tissue for testing. She said I’d be hearing a clicking sound which reminded me of an ear piercing gun. After it was done, instead of sporting gold ball studs in each ear you’re sent home with a Steri-Strip on the incision.
It looks like I’m allergic to Steri-Strips, or maybe it was the Lydocaine, but the next day I developed a rash covering the entire breast and even down below my ribs. Nothing itchy or painful, but just weird and slightly worrisome. After an interminable day or three (at this point, honestly, it’s all a blur), I got the call. You can guess the news from your gyn’s voice because I’ll bet they all start out with “We got the results back on your biopsy and….”. I already know that front end of the sentence because isn’t that the reason she’s calling? Yet while somewhat extraneous, it affords a few seconds for you to gauge the tone of the news and predict what’s coming next. With each word, the tone became increasingly I’m sorry to have to tell you this.
After learning the news of what I’m dubbing my not benign situation while standing in a friend’s driveway, I returned home and a few hours later Faith Hill (remember, the pretty radiologist?) called me not realizing my gyn had already told me. We talked at length and her velvety calmness was the perfect salve. I asked her advice on loads of things and she said I should get a bilateral MRI (scanning both sides) and I asked if they’d automatically order it and she said yes, but after I met my surgeon. The next morning first thing, I was on the phone trying to schedule the MRI, and they said usually you meet with the surgeon first and then you schedule the MRI, but they thought they could do it this way instead. I was meeting my surgeon the next week and certainly wasn’t going to wait all those days to see her only to wait more for the MRI, so I hounded them a bit, ok a lot, to go ahead and schedule it in advance so the doctor would have everything in hand when we met. I mentioned my radiologist suggested it, and my Faith Hill get the MRI card worked. The not benigns were surely procreating inside me and needed to stop their shenanigans immediately.
A day or so later on a Friday afternoon I got a phone call from the hospital’s “patient navigator” who asked if she could help. I was in denial that I was on this pink papered path and I certainly didn’t need a navigator, which only further acknowledged the road before me. But she got me talking about my confusion with several MyChart biopsy results, about things like estrogen and progesterone receptors, and HER2, and labeling my not benign situation as invasive ductal. She explained there are some silver linings here. I am ER 100% positive which means that the pill I’ll end up having to take for five or ten years is uniquely suited to my situation. This little bugger feeds on estrogen and only estrogen, so we can starve its sorry ass (my words, not hers). The HER2 thing, which I don’t exactly understand yet, but which I learned is negative, she said is also good news. As we kept talking, I liked her voice more and more. I hadn’t told many people and certainly hadn’t broken down. But I did here. For probably another half hour I sobbed and talked and sobbed some more and she listened and sent love and courage over the phone. And that was everything. That same evening I had plans to go see a play with friends, but after this outburst couldn’t imagine myself ready to leave in 20 minutes, but I made it happen. I loved the play and the evening, but holding my secret inside was hard and unsettling.
The MRI was bizarre. You lie face down on a table that has two big cutouts which line up with your breasts which hang down as if someone below on a stool would be milking you. You are given a rubber oval thing to squeeze if you need anything (thank you, I’ll take a Shake Shake double cheeseburger, stat) as you are rolled into this machine, with earphones on, because it’s loud. They said it would sound like a construction site, but to me it sounded like a phone off the hook which nobody had bothered to put back on. You remember when phones came with wall plugs and curly cords? The MRI attendant seemed proud that Piedmont could now offer me Sirius for my listening pleasure. I choose classical piano which paired nicely with phone off the hook.
Fast forward to I don’t know how many days later, and my husband and I were at a breast center in front of my surgeon. (Btw, Georgia Tech’s McCamish Pavillion could be a fine place to house a breast center – do a drive by, look at its shape and nipple on top and see if you don’t agree.) I had heard of her and her solid reputation, and she struck me as beautiful in a pre-plastic surgery Janet Jackson in a lab coat sort of way. Her calmness worked well against my whatever you want to call it. She told me I was Stage 1 (or could be 2), and 1 cm in size, though the MRI shows it could be double that. Lots of potentially positive news followed by little doubts about whether it was as simple as it sounded. I pictured phone cords from all those off the hook phones tangled up in my breast, making finding this evil bugger hiding in a sea of breast density next to impossible. Still, teary eyed, I asked, “Is this eradicateable?” Surely that’s not a word, but after using it, I wasn’t going to admit to my degree in English, and instead just whimpered softly repeating the question. She gave me a bit of a “well, duh” look, followed by a “yes,” which calmed me down. She said my lymph nodes in both the ultrasound and the MRI looked small and unremarkable, which is what you want, and after surgery we’d determine my course for treatment. She added if my pathology report indicates these not benigns have a low risk for returning, I’ll only have to get radiation. High risk and they add to that the big guns, the cannons, the chemo. After all that, they put you on a pill for five or ten years, depending on pathology results. Piedmont is a badass.
With this diagnosis you get things. As if Elizabeth Warren herself designed this curriculum, there is a plan for everything. There is a nutritionist you can see, thanks to a grant, and I got in immediately. For now, and maybe indefinitely, I’m gonna be a clean eater, and for now, a non-drinker. All the beige colors have left my plate and it’s bold peppers, carrots, kale and fish for me. A little chicken and some nuts too, but no dairy. Almond and oat milk are vying for space in my fridge and that 2% cow’s milk is shoved in back. I’m determined to feed this troublemaker everything it hates, everything anti-inflammatory. I’m certain I’ll have a slice of pizza or bowl of real (non chickpea) pasta now and then because, after all, food is one of life’s greatest pleasures. But I am eating well and it all tastes good. Before I went for a run the other day, while putting on my jog bra, I said to these fellas, the not benigns, “Buckle up! We’re going for a ride!” As I pounded the pavement, I pictured them shaking their heads asking wtf?, pissed off and running out of steam, as I filled my healthy lungs with air and pressed on. I’m loading up with all kinds of good ammo. I’m Will Ferrell, the elf, throwing snowballs at this unwelcome mass. Here! Take this! Splat goes a red pepper. Can’t swim in all that almond milk? Too bad, so sad! Thanks to another grant, there is a counselor to see, giving me ten free sessions, which I’m scheduling weekly. I’ve already been to two and cried through the first and after the second, she said I seem much better. It’s helping. Thanks to another grant, there is genetic testing too, and they’ve drawn two vials of my blood to test some 75 genes. So now I wait for that news. Knowledge will be power.
It’s been a mixed bag (no pun intended) of good and bad, these last three and a half weeks.
THE BAD: I worried every day to get to this day, this lumpectomy. I had to make umpteen appointments and be poked and prodded for biopsies, inserting clips in my breast to guide the surgeon, and then more fun with the IV at surgery and of course, the scalpel. And then I had to worry some more. I had to start telling people, because how can you not?, which made me scared to see their faces often scrunched with concern, as if they saw my future and now felt sorry for me. I had to imagine a potentially sunburnt breast from radiation and wonder would it be permanent, or a bald head from chemo, and imagine what kind of hair would grow back. And what will this medicine do to me other than block estrogen from getting to this breast, the chosen snack of the not benigns. I worried my body has become a game of Whac-A-Mole, stamp out the pests in the breast, only to discover them popping up somewhere else. I worried about worrying my family, my children in particular.
THE GOOD: I caught this myself, it’s early and it’s small. It’s “eradicatable,” and it’s clear someone is watching over me, and for that, I am beyond grateful. My diet is squeaky clean, I am going to move more, and my body will be stronger for having gone through this. This is a wakeup call. A call for more calm and less worry, and I already feel it washing over my cells. I may have been opened up today in surgery, but I am forever opened to breathing in all the good I’m finding and exhaling it over my friends and family, and over strangers too. After I finished rattling off my many questions in the recovery room to my nurse who had remained with me well past what is normal, I got dressed and was about to draw the curtain to leave. I heard a voice through the adjacent curtain say, “I’m glad you asked all those questions. They helped me too. I’m over here next to you.” I said “hi” and opened my curtain to see who was next door. It was the lady who had been on the elevator with me this morning, also heading to pre-op, and I remembered our husbands next to us silently ruminating on what was ahead for their wives. She was lovely and about to be admitted to a room as she’d had a double mastectomy, saying goodbye to both breasts which I can only assume must have been overrun with not benigns. I took her hand and squeezed it, and told her she would do great. She smiled and her eyes sent me the same good wishes. My exit wheelchair was waiting, but I found it hard to leave her with our palpable connection, instantly filled with love and understanding. I leaned in and cupped my hand around her cheek and reminded her again that all will be ok. She will do well as will I, and that moment will surely stay with us both.
I will hear from pathology in a week or so and know more about additional treatment, but for now, the not benigns have left the building, I’ve got my family by my side and friends who are in touch. I couldn’t ask for more. But actually there is one thing I need: Ladies, feel yourselves up like clockwork every month. Learn how they feel, even if they’re pea gravel, so if they change you will know. Also, if you’re considered dense or even if you’re not, insist on a 3-D mammogram, even if your doctor whines that insurance might not cover it. Learn the cost and just do it, charge it if you have to. I didn’t know I needed to request this kind and I’m certain if I had, this would have been caught even earlier when it was even smaller. I’m lucky in so many ways to have good insurance, a strong body and the boundless perseverance that I do.
And lastly, be kind to yourself. Really kind. Because the not benigns hate that. And more importantly, because you, my dear, are worth it.
Postscript: I just learned my lymph nodes are completely clear and the margins around the mass they took are clean. All signs are that I’ll only need radiation but another test due back in two weeks will confirm. Suffice it to say, I am over the moon and thankful beyond measure.