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.
I’m receiving this custom infusion by two very Special Agents C & D, initials of the chemical agents I’m receiving, Cyclophosphamide & Docetaxel, helpers, like Dr. Seuss’ little Cats A, B, C and so on. These agents are cleaning me through and through — picture Dow’s scrubbing bubbles, an infusion of Mr. Clean’s strength cut with Mrs. Meyers’ love.
I should know in the next three weeks if I will experience typical shedding which is expected or else full on hair loss. I’ve got a call into my hospital’s cancer boutique and based on the recent photo of me I sent her, I’m a candidate for their “California Dreamin.” All I can picture is Carol Channing for some reason!
Someone asked me if chemo is loud. Maybe she was picturing wails from patients as harsh chemicals surge through them, or loud machines chugging to push sloggy liquids through the lines. It’s hard to describe, but it’s none of that. You’re not worried sitting there. Or I wasn’t. And no one looks sickly or anything. There is a quiet kindness in the air and the room is pleasant and airy with big windows offering views of Atlanta outside. Only discomfort was icing my fingers and toes but I took breaks. Otherwise you’re just sitting in these super comfy chairs that recline, nicer than any nail salon, with an IV in your arm. Joe brought his laptop and we went over some house ideas – talked about fireplace details. We brought lunch from home and ate it there. It was almost kind of fun, in a day date sort of way. When the place cleared out, they even let him hop in a comfy chair to stretch out.