I started physical therapy to restore range of motion in my shoulder and arm, left tight and knotty from a recent lumpectomy and radiation. Being able to reach behind and scratch my back easily and pain-free is a new goal, as is securing a bra clasp. Over a year since surgery and nearly that long since treatment, you’d think by now the healing would be all done, but seems the tightness has only increased. The tissue under my arm feels like fabric sewn with too tight stitches and all we need is a seam ripper to break through and pull the threads loose.
You’d think by now the healing would be all done.
Like you do when telling an infant’s age, I used to talk in months – I’m three months post chemo, six months since radiation, etc. – but thankfully now I can talk in years since all this started up in late 2019. My surgery and treatments have graduated out of their infant stage and into a toddler stage, with tantrums arising as this little blocked lymphatic circulation mess I must now clean up.
The physical therapy office is close by, convenient and calm — nothing like my last PT experience several years ago where the incongruously L O U D radio was routinely tuned to the unholiest of trinities – The BeeGees / Gerry Rafferty / Air Supply – and my physical therapist’s brash order-me-around style certainly didn’t fit my idea of a first-string player you’d pick for your healing team. Last week at my initial session, I was assigned an Emory student, a no-nonsense tucked-in clean-shaven guy who, after moving me through several stations working my arm and shoulder, moved into a deep tissue shoulder massage miraculously landing on all the tight unyielding spots which, albeit stubbornly, gave way. I left with a sheet of homework exercises, most of which I completed except the one involving a Theraband. Surely I own a Theraband, but, alas, where is it? Still haven’t brought myself to enter a Target or Walmart since the pandemic began, so opted against purchasing. I know, Amazon.
At today’s session I worked with a petite young lovely woman who moved me through various stretching and strengthening stations. The therapists toggle between several patients, like busy chefs minding multiple burners, careful to tenderly sauté and not let a rolling boil erupt or a pan sit unattended and burn. They move between patients rolling their laptops around on wheeled lectern style desks.
I might have blurted out to my therapist that the roving desk setup she maneuvers reminded me of the SNL skit with Melissa McCarthy playing Sean Spicer rolling her podium on the streets of New York. She humored me with an amused/mortified smile, probably not so happy she got assigned the clown who wants to inject humor into all of it, breaking up the calm focused room she and her colleagues have cultivated. I joked now she won’t be able to shake this visual and she smiled again realizing the truth of that unfortunate circumstance.
This weekend we went for a Sunday drive, winding through various parts of Atlanta — Edgewood, Inman Park, Poncey-Highlands. Other than looking at house paint colors for inspiration, my primary goal was to score a canelé, a small striated cylindrical French pastry flavored with rum and vanilla with a soft and tender custard center and dark caramelized crust, which I found at Ponce City Market’s Saint-Germain bakery. I’m working on not consuming much sugar, but occasionally the urge is real, and I’m increasing trying to locate something exceptionally good vs the first filler sugar I can get my hands on. By the looks of things in the Food Hall, but for the masks covering most people’s faces, you’d never know we’re in a pandemic. Throngs of loud-talking particle-spreading people filled the hall, the din of noise so visual and loud I nearly abandoned the much-anticipated sugar errand. I got myself a canelé and Joe a palmier, his favorite, plus a coffee éclair and raspberry and passion fruit mousse little round cake for later. We nibbled on the canelé and palmier and meandered through neighborhoods studying houses’ paint colors from our car for our some-day repaint.
Driving through Edgewood, I noticed a ramshackle of a church with a sign out front and the message, “Your Grief is Valid.” We live in a world full of dichotomy – help is on the way with stimulus checks about to drop into accounts and Covid vaccines increasingly common, yet still there are long lines for those waiting for a bag of food to feed their family and scores of people pre- and post-Covid cloaked in a stuck-on heaviness they can’t shake. Last week, the TV networks broadcast highlights looking back on the full year since Covid was proclaimed a global pandemic. How do you bundle so much loss into a news segment? It was admittedly well done, but so sad, too. Smiling faces now gone leaving behind families who don’t know where to begin to climb out of their despair. Exhausted doctors and nurses, their virtues extolled, in search of a reset or second wind or both.
Your grief is valid.
We each heal in our own time. And time, for the most part, heals all things. But for those of us stuck in the middle between our hurt and our healing, and with a pandemic thrown in the mix, every morning can feel like Groundhog Day, a familiar rotation without much hopeful change in sight. Circling back to the church sign, your grief IS valid, despite however fresh or old, and the way you move through it is your choice. But until you feel well on your way, please don’t stoically go it alone or hide until your best self magically shows up. Because we all know things don’t quite work out that way. Instead, walk with someone, grab a coffee or a canelé and take some time together, comparing notes, taking notes, or soaking in the simple and reliable beauty outside. One day when you aren’t looking, you will feel it, a little less heavy and moving forward with a slight change that happened, when things starting looking brighter, sharper and you saw a shiny glint of hope in the distance. Try and break up the days, infuse them with connection. Sure, physical therapy can mechanically do it, but being together also melts scar tissue, and is what opens up space for all kinds of goodness.
I went in August 24 for a diagnostic mammogram. My radiologist suggested I go ahead and get one instead of waiting until October as my gynecologist planned. The mammogram at this hospital presented stark differences. The robes you change into aren’t a screaming, Pepto-Bismol pink, but a white soft cottony waffle weave accented with subtle thin pink piping. They’re stacked neatly waiting on you in a warming box. Divine. Here I found few deep Southern accents, but more Brooklyn, and simple pastel beach scenes or botanical wall art; you’re not coddled as much either, which surprisingly I liked. Besides, the last place brought bad news, and I am so over bad news, so I needed a new place.
When you’ve had what I’ve had (yes, I now get to check the “history of breast cancer” box), for future mammograms, instead of going home to wait on your letter in the mail, your results are on-the-spot. It was a long wait, and after looking each other up and down for a few minutes, a woman across from me and I eventually broke our masked silence with a “What are you in for?” dialogue. Me: “I’m Stage II, 100% ER positive, post lumpectomy, chemo and radiation.” You? “I’m triple negative.” Even though no one in our predicament can determine exactly how we ended up here, we each tried our best to reveal what might have contributed, with a Forgive me for I have sinned confessional to each other. She: “I used to eat ice cream every single night.” Me: “I’ve stopped red meat and now only occasionally enjoy a glass of wine.”
A nurse calls her, and she gets up to go hear her results. Next a man, I presume the radiologist, got me for mine. Immediately I assumed since I got the doctor, the news seemed more complicated, and complicated could spell trouble. We went to a room that was far too nice for doling out good results. He made small talk before he dove in, admitting if he didn’t know better, that I’d had a lumpectomy, my scans might have raised a red flag. Lots of them as it’s a mess in there. Not his words exactly, but with all the pins, scar tissue and density obscuring things, he seemed exhausted from wading through the scans, as if he’d just returned from war.
I knew my left breast was a mess when back in 2000 I began breast feeding my first baby. I knew there was milk in there but, damn, quite the struggle to get it out! Always a poor producer and the plumbing seemed faulty every time I pumped or breast fed my babies. But you have to get it out of there or you’ve got a painful situation on your hands! After his initial comments about such chaotic density, the radiologist said everything looks fine. Gosh, did we really need to sit in that private room for all this? I got up and left, happy to dodge this scare. The woman who’d led me to the dressing room asked a man at the checkout desk to schedule an MRI. I asked why an MRI, since my mammogram was fine, and she mumbled something about high risk. Wait, me? I ignored my confusion and instead requested the first available appointment and to get on the cancellation list. I snagged the only one they had, four days later at 6:45am.
I had an MRI before back when all this breast drama started up in November of 2019, but experiencing how particularly thorough this new place was gave me a reassuring level of comfort, that this hospital is sparing no detail, turning over every stone so I’ll continue to turn up “normal.” Friday came and I was up at 5 to leave by 6. It was quiet in the lobby except for a few patients waiting for their own scans. Wonder what they’re in for? Since MRIs are loud, you get headphones and your choice of music. I went for my old standby, classical. No sooner did they slide the headphones on than Pachelbel’s Canon in D began. Always floods me back to my twilight wedding, walking down that beautiful outdoor aisle passing smiling friends and luminaries along my way. The technicians worked efficiently, and I was heading home in 45 minutes.
Busy in my kitchen later that afternoon, I got a call from my radiation oncologist. She asked, had the radiologist already called me? Uh oh, I’ve heard this kind of call before. Cut to the chase please, I thought impatiently. “Ms. Greco, the radiologist saw some areas of concern on your MRI and wants to schedule a biopsy.” First off, my brain is screaming, area(s) PLURAL?You have got to be &#$@-ing kidding me?! And then it moves on to the OF CONCERN part, concerning it its own right. I had noticed a little pea sized nodule during my daily breast massage but assumed it was just knots left behind from surgery and radiation. After radiation ended in April, the radiologist had suggested I daily massage the tissue to keep it from forming too much scar tissue, which I’ve done.
Alas, this was no dream and I was told they’d be calling soon to schedule my return for another MRI + biopsy + mammogram. Great way to start the long weekend. Ugh. I got scheduled for that following Friday, a 7am appointment, with arrival at 6:30. Another early morning, but nothing like getting it out of the way.
Thankfully between our house renovation and chats and visits with my boys and my own endless internet research on breast nodules four months post radiation, fat necrosis, and any other topic which resembled my situation, the week ticked along fairly quickly.
Up early again for the MRI and arrived to find another handful of people socially distanced in the waiting room. I got registered, my hospital bracelet, etc. and was escorted to the dressing room. As with the previous MRI, I had an IV inserted in my arm so they could inject a contrast dye, which improves image quality. I got my choice of music again and this time I thought, let’s change it up. I asked for something calming but not classical, and the nurse suggested nature sounds, so nature sounds it was.
My nature music started with water sounds and soon my brain went to our recent plumbing situation with camellia roots wrapped around our pipes and toilet and adjacent tub filling with water. After the plumbing fiasco (which we resolved) I moved on to stiller waters and imagined my sister and me canoeing on Lake Lanier, like we did as teenagers. Our oars cut the glassy water as we maneuvered into coves, the mature adventurers we were, now out of view from our parents we’d left behind on our sailboat docked in its slip. As I lay masked on my stomach, the doctors slid me in and out of this machine, instructing me over and over to stay completely still. I’m guessing they felt they must repeat the instruction given how much I talked at the outset, thinking surely this motor mouth wouldn’t put a lid on it and stop moving in order for them to get their work done. But as the kind nurse told me afterwards, I was a real trooper. It must have been nearly an hour that I was on that table and somehow, I didn’t move at all.
After my water music segued into crickets and other summer night insects, I noticed a little half moon shaped light below near the floor or maybe on the table I was on. It looked like the Morton salt girl’s umbrella, complete with curved J shape below for its handle. As I was wheeled in and out of this machine never knowing when they’d move it out or back in, I was reminded of one of my favorite Six Flags rides, Mo Mo the monster, when the guy working the ride spun me around extra times since I was the birthday girl. I decided getting zoomed in and out of this machine was instead a fun ride, plus I had the benefit of summer bugs and the Morton salt girl for company.
Once the biopsy began, the nice nurse – the one who gave me the warm robe and told me I was a trooper — began holding my hand. I remember when a nurse at an earlier biopsy last year began lovingly stroking my calves. This nurse held on to my hands and I realized how good that felt, especially these days when we don’t get to hug anyone except those we live with. I needed that touch so badly and while my left hand was holding on to the emergency ball they give you to squeeze in case you need them to stop, I found a few fingers on my left hand joining her hand with my right to communicate an extra, this is so nice and I feel loved, message. Because I had been numbed, I didn’t feel them jostling and twisting to get this suspicious mass during this core needle biopsy, yet I could tell it wasn’t simply a pulling on a syringe but a turning motion as if wrangling a cork out with a corkscrew. Weeee! I got wheeled back in again and more loud MRI knocking noises harmonized with the summer bug sounds, and I was back out. A final jostling to insert a pin, another marker to light the way for the next person doing my scan, and in and out several more times, and it was done.
Next on the menu was a mammogram. Freshly bandaged, I was promised this mammogram was of the gentle variety. Having not had one since my initial diagnosis in November (and since subsequent surgery and radiation), I didn’t realize how much it was going to hurt since the former surgical site was terribly tender. Picture your ear lobe after you pierce it, forever left with a knot. My knot hurt getting flattened onto the machine, especially fresh from the biopsy. As I was pressed into a pancake again, the blood started coming, smearing the glass. My wandering mind went to a hilarious sketch years ago with Dan Aykroyd channeling Julia Child boning a chicken, blood spurting up and down onto the bird. Instead of high-pitched Julia gasps, this technician was calm and simply wiped it away. But my poor breast, how much more was it going to endure? A few more images from a few more angles and I was left to wait while she met with the doctor down the hall. She returned with news he was pleased with the images, and off I went to check out.
The nice nurse who’d held my hand handed me off to a gentleman at the exit desk, telling him I’d had a biopsy. He couldn’t hear her, so he whispered, as if trying to simply mouthe it, “She had a b i o p s y ?” lest the folks in the waiting area learn my situation. I felt this strange cloud of shame and sadness waft over me. He told me in a quiet sympathetic voice to enjoy the holiday weekend. I uttered a “You, too,” and got the hell out of there. Once home I had to take it easy which for most people means lie in bed and rest. I had to realize that paperwork, dishes, laundry and dog walks could wait and that I could actually lie in bed and rest, which is exactly what I did, icing the area 15 minutes every hour on the hour until bedtime. The biopsy site stung so that kept me still and thankfully my 13-year-old dog was content to stay put on the kitchen floor, slinking in and out of sleep.
The doctors told me I’d hear results by Tuesday or Wednesday, and it was an interminable five days. Wednesday came and went and nothing. I had decided it’s ludicrous that I would be the one with that unfortunate case of a recurrence a mere four months post radiation. No matter the new diet, ridiculously slight alcohol intake, stepped up exercise, mine was an aggressive little bugger that could withstand chemo and radiation and emerge with a renewed, Please ma’am may I have another? annoying verve. My sister tried to convince me I’m not special that way. I felt a bit like a criminal, like I was being punished yet couldn’t understand my crime. I figured I had a 50/50 chance and felt like over the weekend they’d rustle up a public defender – a la My Cousin Vinny – and the next week hopefully I’d have some semblance of a case ready.
Now it’s today, Thursday, and I couldn’t stand the silent house any longer, so I left for the hardware store, where I tinker from time to time, just like my dad used to. I love it there because it’s small, there’s plenty of interesting merchandise, and people are ready to help you find what you need, answer any questions you might have (except the What do you think will come of my biopsy? variety). Found some flowers on clearance to replace my tired zinnias and was loading them in the car when the phone rang. An unknown exchange, certainly not my doctor’s office, but I answered it anyway. On the other end of the phone was a smiling Brenda’s voice, which exclaimed: “Hi Mrs. Greco, I have good news for you, as I know you’ve been waiting. We got your results in and it’s only scar tissue. So we won’t need to see you for six months.” I literally said, “God Bless You” and thanked her profusely. If you can hug through the phone, then that is what I did. It was heartfelt and I’m certain Brenda felt it. I love that Brenda.
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.
Maybe it’s this pandemic or the end of my cancer treatment, but I’ve been thinking a lot about how to improve things — my outlook, my sense of hope, tapping into more curiosity and creativity and connection, and not wasting any more of this precious time we get. When I started this blog a few years ago, I titled it Hindsight because I realized it captured so much of what I’ve been doing, thinking about the past and noticing patterns so I can learn more about myself. I hope to collect the best parts of the past and reuse and refashion them for these times, because those bits are the ones I want and need more of.
I’ve been thinking about not wasting any more of this precious time we get.
There are plenty of traditions I’d like to resurrect. For instance, I’ve been wanting to go on picnics again, remember those? Growing up, we had a red checkered tablecloth and four of us would grab the corners and lay it down flat, smoothing out the wrinkles. Then the real fun began, unpacking the basket full of delicious things our mom had packed. Usually we were by a creek or a lake, so along with great food, there was a beautiful backdrop.
Other than packing a meal to enjoy on a car trip, or dining alfresco somewhere, the last real picnic I had, the kind where you make and pack up all the food and sit outside on a blanket, was a surprise one my husband pulled off over two decades ago. It wasn’t fancy or somewhere out-of-town. Instead it was in Ansley’s Winn Park here in Atlanta, and he’d cleaned out our fridge and created a lovely spread, with salami and baguette and artichoke hearts and some sweets and nice beers too. I think he even brought a blanket to sit on. He’d stolen a few hours in the middle of his workday at Colony Square, and the two of us lying under midtown’s twinkling towers in my favorite park was perfect. I don’t know if it was the surprise, the delicious meal resulting in a cleaned-out fridge, the loving company or the magical backdrop that blew me away, but am thinking what touched me most, is how thoughtful he was to plan and prepare this.
Remember visiting with people, before the Internet and answering machines and DVRs, and when we spent an enormous amount of time outside? Times when you would walk to a neighbor’s and knock on their door unannounced and while away an afternoon just being together? My recent visit with my friend, Karen, while planned in advance, felt much like one of these. She greeted me at her door with one of those hugs you never forget: big open arms that pull you in tight and hold you there. I haven’t had one of those hugs in maybe ever, nor had I seen her since my breast cancer diagnosis and treatment. Her hug communicated so much – such happiness and relief to see me smiling and healthy. We drove to Stone Mountain and walked the five-mile loop, and then returned to her house where she gave me a wonderful tour . She pointed out memorabilia and told stories about special items she and her family had collected. Afterward, we had tea on her deck and with lovely Lake Kenilworth in the distance, visited some more.
One of those hugs you never forget: big open arms that pull you in tight and hold you there
Recently my sister and niece came down from Chicago, their visit timed with my last chemo treatment. After the excitement of picking them up from the airport and settling them in, I remember us hanging around my kitchen table nibbling on snacks and catching up. In my usual self-conscious, self-deprecating style, I was poking fun at my various bald spots on my scalp, out of my control of course from the chemo, the ones where the cold cap didn’t fit well, a visible sign I was now different from them: I was the cancer patient. They assured me I looked fine, and after I joked some more, my sister looked up with her kind loving eyes and said, “Susie, we love who you are no matter what is going on with your hair. You’re still you and we love you like we always have.” In that moment, I saw the truth. All my jokes aside, these two wonderful women before me in my kitchen knew me and loved me all the more. My eyes well up just retelling this.
You’re still you and we love you like we always have.
I’ve always said food is love and I still believe it is. It’s my way of showing I care, that I want to nourish you and delight you with something delicious, and it’s others’ way too. This simple act of preparing food for someone is so intimate and layered and loving, and whether complicated or simple, it’s a recipe that keeps on giving. Over these last few months, I’ve had a half dozen or so friends bring me delicious things — soups, stews, seafood and chicken, all healthy and homemade with love. I’ve frozen extra servings and reheated them weeks later tasting and receiving the love all over again.
I’m finding these times are further connecting us as we isolate. With much of the background noise of our busy lives gone, it seems our conversations, Zoom cocktail hours and texts are stripped down to their essence: how are we each doing and how can we connect, how can we help one other? I’ve got a few friends who thoughtfully tell me when they’re headed to the store and can pick up an item or two I need. And these days, I surprise myself by letting them. In turn, I’m already thinking of what I can do for them, maybe something special to eat or helping to solve a problem they’re struggling with. Or maybe it’s just staying in good touch.
How can we connect, how can we help one other?
The other night our power went out, unfortunately timed precisely during our return from a particularly large grocery run. As I knelt on my front porch, flashlight strategically propped and Clorox spray in hand, wiping down the contents from endless plastic bags, a rush of gratitude spilled over me at this sweet assembly line: I wiped down the items, one son took them from me at the front door and brought them to the kitchen where, by candlelight, the other son and my husband organized them and planned how they’d refrigerate and freeze it all with 1-2 limited refrigerator door opens. These hundreds of dollar’s worth of groceries were our livelihood, our next week to ten days of preparations and conversations over nourishing meals and yes, our share of Haagen-Dazs and chips, fried chicken tenders and other empty calories, too. The candles and oil lanterns I’d rounded up lit our hall, dining room and kitchen, so for the next hour until the power came back on we mostly hung around those areas, all of us hovering near all the food we’d scored and safely stowed.
Today the lights are on, the sun is shining and it’s a new month. It’s also the start of my new and final cancer treatment, the daily ten-year pill I started today to keep this long-gone tumor forever in my rearview mirror. This medicine is known equally for its effectiveness and side-effects. When and if the joint pain or night sweats or doldrums hit, I hope I’ll remind myself that these are signs that it’s working. I hope these annoyances will actually lessen or else become something I absorb and get used to, and that they begin to seem like the helpers you’re supposed to look for in times of need.
So, here’s to more picnics and visits and helpers, and to loving each other with hearts wide open. xoxox
Heading out of town. Leaving the four walls we’ve shared this last month. Crossing into another state entirely. Feels like we’re getting the hell out of dodge and maybe even leaving Covid behind too when all we’re doing is driving to Highlands, NC for the day so my husband can check out a jobsite for a potential project. The pets remain to nap the day away. Gave the dog two Benadryl to help with her skin itches, so she’s definitely in for a good nap. Wonder if they have weird Covid dreams too?
I had another strange dream last night. It was my birthday and I went to the mailbox and it was packed with little gifts wrapped in brown kraft paper, a delightful surprise I’ve never seen. I filled my arms with as many as I could carry and went to the front door. The street was somehow smaller and the driveway shorter to this house, the one in the dream, yet it was still the house I live in now. The front stoop by the door was filled with more birthday packages, these boxes beautifully wrapped. I’ve never seen anything like it, and it was exciting. As I approached the door, several people I didn’t recognize left, and none of them were wearing masks. I went in and the house had either just had a real estate tour or a closing had already happened in the eight hours I’d been at work. A woman with ‘50s sprayed brown hair with a “That Girl” flip greeted me. She moved about as if she was the lady of this house and carried a refined contentment amid its new décor. All I could utter is, “Where are the pets?”, imagining the coming and going must have led to their escape. In an I’m holding them hostage tone, she told me they were secure upstairs. I scanned the place full of berber carpets and monochromatic décor, straight out of a Ballard catalog. There was nothing personal, not a family photo of mine or hers, a stack of bills, or umbrella stand. Knowing my pets were safe I quickly tried to figure out how I was going to handle this situation. Forget my birthday, which normally was a day I’d savor, my entire life had been hijacked. And still it seems by some miracle Covid hadn’t seeped into this antiseptic environment. I wanted to go see my pets and rescue them, but where was I going to go? My family wasn’t around – maybe they were at work and school? – but this lady was clearly planted here. Then I woke up.
Our third cat, a gorgeous black outside older kitten, is no longer with us. Early in the morning a few weeks ago as I was upstairs in the bathroom looking out the window, a large coyote confidently and ceremoniously ambled across our back yard, our sweet black cat dangling from its jaws, its mate following behind. I’ve never seen anything like this, as if somewhere in the depths of the woods surrounding our house, the earth just opened up and swallowed up this sweet creature I’ll never see or hold again.
A dad in my town named Matt died recently of Covid. He leaves behind four kids and an ex-wife and friends and family all who were pulling for him. He used to teach yoga at the Y, and I loved his classes. He was so calm, and I always felt that way during and after his classes. I hate that he had to fight so – which went against his chill Zen nature, but Covid is horribly unpredictable and relenting. Emory University Hospital said he was their sickest patient, and while I didn’t hold out much hope after hearing that, now that he’s gone, I feel sad for all he left behind. And for him too. So much more life to live.
Driving up I-985 with Uncle Tupelo coming through the speakers and half eaten deli sandwiches rewrapped for later, we were quiet anticipating whatever was coming next. I hope we’ll find ourselves on curvy roads so Evan can strike the riding the fast car on the curvy mountain roads off his bucket list. I hope I see cows or colorful mountain ranges, or both. Joe brought along a Bass Ale for me and a Hopsecutioner for himself, just in case I decided to take off the brakes and have a beer. With my hyperfocus on my health of late, I still feel guilty drinking anything and average only a glass of wine every week/ten days. Surely, that’s allowed?
It felt mischievous slinking out of town
We all seem glad to be going somewhere after standing still for weeks. It felt mischievous slinking out of town, as if we had needed a permission slip to leave the city and had decided to hell with it and just up and left. We certainly weren’t slinking and made our usual production — kids scurrying about looking for stuff, headphones and jackets and snacks, and grownups grabbing coolers and ice and drinks. The dog understands this commotion all too well and got that pitiful look on her face, as if saying, really? again? You said you wouldn’t leave me anymore! The Benadryl had kicked in and she started to nap, realizing even her most convincing looks were futile and we would keep right on packing.
Maybe nobody will be wearing a mask in NC. Maybe Covid would magically go away while we were on the road and we’ll return to something that feels normal. I need this escape. We all do. It offers another day behind us. Something different.
I’m going where there’s no depression to a land that’s free from care – Uncle Tupelo
I tried adjusting my warped sunglasses to hide my exposed right “eyebrow” both of which have disappeared without notice in the last few weeks. Eight weeks post chemo, I’ve got more hair loss still, a little more from my scalp and now this void where brows should be. Maybe I’ll draw them in and give myself an astonished expression with high arches above my eyes, like our dog’s vet’s assistant used to do. The line was so sharp and looked wide awake, and I’m assuming she drew it on fresh each morning. On my face there is a faint dirty blond space where my brows were and a few scattered hairs remaining. Summer is going to be strange as it is, so the brows’ return will be something to look forward to.
We’re in Rabun County now passing signs for Lakemont, the turn off for Lake Rabun, which takes me back to fun weekends with my childhood friend, Margaret, at their lake house there. For these weekends, my mom would crank out one of her famous pound cakes to bring with me, and we’d have it for dessert after the beef fondue with consommé rice dinner her mom made. Afterward, on Saturday night, Margaret, her brother and I would boat over to Hall’s Boat House to hear the Blue Grass music and watch the cloggers. There were kids our age from area and Atlanta schools, and it was fun to check out who was there.
Heading back toward home, we stopped along the road in South Carolina and walked along a path leading to expansive views from Bald Rock. Walking as people approached, Joe reminded me, “Don’t forget to hold your breath.” I thought there must be some dog poop ahead or something, but he was referring to the coronavirus. (We’ve discovered we both hold our breath sometimes when passing people if we don’t have on a mask.) I had forgotten about the virus for much of this day trip since we saw so few people. There was that one man we saw in downtown Highlands wearing a mask, but otherwise no signs of any pandemic. How nice to forget and just focus on the path in front of us.
A little taste of our music, and the song Uncle Tupelo’s No Depression, along the way: