Susan's Story: I Combatted My Diagnosis With Diet, Exercise, and Visualization

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 going to be one of those stories. This one’s different but stay with me.) They were unusually smooth, nothing like 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 seemed next to impossible, and so I stopped but continued annual mammograms.

Over the years I’ve been religious with all my health checkups, sometimes even calling the doctor early and reminding them it’s time for me to come in. And 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 at the breast health center and once called, got it done. They called me back days later needing a “second look.” All you can think is, "Holy shit." The days drag when you’re waiting for the “all clear” from MyChart and that coveted letter in the mail a week or so later, which you gratefully save in a file to keep forever. I was cleared and declared “normal” and looked forward to another year’s stay of execution.

Fast forward to October when for some reason I decided to feel both sides fully, almost marveling at their teardrop symmetry and softness, delicately balanced above my rib cage. All that pea gravel gone after menopause; this texture was silky 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 but felt fine about it since I had just gotten the all clear in July.

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 as Sally Field, I couldn’t help but wonder, WTF? My doctor felt it too but reassured me it’s probably nothing, knowing I had just three months earlier gotten that clean result.

Next on the agenda was another mammogram, this time 3-D, followed by an ultrasound, both scheduled that same week. As I checked in, the woman in reception, seemingly thrilled with her bouquet of pink pens, reminded me that I can keep the pen. My mind went to Seinfeld and Jack insisting to Jerry, “Take the pen!” I threw it in my purse hoping all that pinkness wouldn’t leak all over the place and spread its hot pink malignancy everywhere.

Off to change in their changing room but this time you pass the normal waiting area and must go deeper in the facility, to a room with nicer snacks and cushier chairs, not intending to but only adding to your anxiety. I refused to take an apple juice or the Milano cookies because I was a regular in the first room and wasn’t joining this club.

The radiologist viewing my ultrasound asked me if I’d experienced trauma to my left breast, or else did I have diabetes? Hmmm, I did fall at Bryant Park a few years back ice skating and cowered off the ice to heal only to go back on and do it again. Skaters don’t just keep going, 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 a damn acorn on steroids moved into my path. Down I went and off went the skin on my knees replaced with bloody sticky ovals on each knee cap, like a kid, but with wrinkles.

The radiologist said her share of "hmmm"s, and "I’m concerned"s, and then I found myself on their calendar for a biopsy. The radiologist for the biopsy was silky smooth, 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. After it was done, they put a Steri-Strip on me and off I went.

It looks like I’m allergic to Steri-Strips or maybe it was the Lidocaine, but nevertheless, the next day I developed a rash covering the entire breast and down a little below my ribs. After an interminable day or three (it’s all a blur), I got the call. You can never tell in your GYN’s voice because I’ll bet they all start out with, “We got the results back on your biopsy and....” I know that front end of the sentence merely because she is calling so, while extraneous, it does give me the opportunity to gauge the tone of the news and predict what’s next. With each word, the tone became increasingly, "I’m sorry to have to tell you this...."

After that news of what I’m dubbing my "Not-Benign Situation" that she delivered while I was chatting with a friend in her driveway, I returned home and a few hours later Faith Hill (remember, the pretty radiologist?) called me not knowing I already knew. We talked at length and her calmness was the salve I needed. I asked her advice on loads of things and she said I should get a bilateral MRI (both sides) and said I could mention her name when scheduling. The next morning when they opened, I was on the phone trying to get that done. They said usually you meet with the surgeon and she suggests it and then you schedule the MRI. I was meeting with the surgeon the next week and certainly couldn’t wait all those days to see her only to wait more days for the MRI, so I hounded them a bit — okay a lot — to go ahead and schedule my MRI in advance so the doctor would have everything in her hands at our meeting.

A day or so later after this bomb dropped, I got a phone call. The hospital’s patient navigator was calling, and could she help? First off, I was in denial that I was on this pink-papered road and I certainly didn’t need navigating. 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 pill you have to take for five or ten years is uniquely suited to my situation. This little bugger feeds on estrogen and only estrogen, so we’ve got ammo tailored to kill. The HER2 thing which I don’t exactly understand I learned is negative, which she said is 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 over the phone. Afterward, I had plans to go see a play with friends and couldn’t imagine myself ready to leave in 20 minutes, but I did. I loved the play and evening, but keeping this dark secret inside was hard, not to mention unsettling.

The MRI was rather 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. Instead, you are given a rubber oval thing to squeeze if you need anything (I’ll take a Shake Shack double cheeseburger, stat) as you are rolled into this machine, earphones on because it’s loud. They described the loudness as a construction site, but to me it was the loud sound of a phone being off the hook and nobody bothering to put it back on. (You do remember when phones came with cords?) The attendant sounded proud when she offered me Sirius for my listening pleasure and said I could listen to whatever I wanted. I choose classical piano which paired nicely with bouts of phone-off-the-hook.

Fast forward to I don’t know how many days later, but my husband and I were at a breast center and in front of the surgeon. (By the way Georgia Tech’s McCamish Pavilion could be a fine breast center – do a drive by and see if you don’t know what I mean.) She resembled a highly educated Janet Jackson before all those cosmetic surgeries, and her calmness worked well against my whatever-you-want-to-call-it. She told me was I was stage I (or could be II), and 1 cm in size, though the MRI shows it nearly double. Lots of potentially positive news followed by a little doubt about whether it was for sure as simple as it sounded. I pictured phone cords from all those off-the-hook phones tangled up in my breast making seeing this little toxic bugger in this sea of density next to impossible. Still, teary eyed, I asked, “Is this eradicatable?” Surely that’s not a word, but I didn’t admit I had a degree in English, but just continued asking that same question. She gave me a bit of a “well, duh” look which calmed me down. She said my lymph nodes in both ultrasound and MRI look unremarkable, which is what you want, and said after surgery we’d determine the course of treatment. She did give more detail that if my pathology report shows these Not-Benigns have a low risk for returning, I will have radiation. High risk and they pull out the big guns, the cannons —the chemo. After all that, they put you on a pill for five or ten years, depending on what pathology reports. 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 into see her immediately. For now, and maybe indefinitely, I’m 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 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 evil bugger everything it hates. Everything that is anti-inflammatory. When I went for a run the other day and while pulling on my jog bra I said to these fellas, "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 lungs with air and pressed on. I’m Will Ferrell, an elf throwing snowballs at this unwelcome mass. "Here! Take this!" Splat goes a red pepper. Can’t swim in all the almond milk — too bad! I’m loading up with all kinds of good ammo. There is a counselor to see, and there is another grant for that, giving you ten free sessions, which I’m utilizing. Already been to two and cried through the first and was labeled largely improved by the second. It’s helping. There is genetic testing and they’ve drawn two vials of my blood to test 74 genes. There is a grant for that too. So now I wait for that news. Knowledge will be power.

It was a mixed bag (no pun intended) of good and bad, these last three weeks.

THE BAD: I worried every day to get to this day. 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, 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 what kind of hair would grow back, if any? And what will this medicine do to me other than block estrogen from getting to this breast, the determined food supply of the Not-Benigns. I worried it’s a game of whack-a-mole, stamp out the muck in the breast, only to discover it somewhere else. Rinse and repeat. 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. 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 was a wakeup call. I may have gotten opened up today, but I am forever open to breathing all the good I’m finding and exhaling love toward my friends and family, and now it seems, total strangers. After I finished rattling off my many questions, I got dressed and was about to draw the curtain to get ready to leave. I heard a voice through the adjacent curtain say, “I’m glad you asked those questions. They helped me too. I’m over here next to you.” I said, “Hey” and opened my curtain to see who was next door. It was the lady who had been on the elevator with me this morning, our husbands silent next to us ruminating on what was ahead for their wives, and she was lovely and about to be admitted to a room. She’d had a double mastectomy as both breasts had been riddled with the Non-Benigns. I took her hand and squeezed it and told her she would do great. She smiled and sent me the same good wishes. My wheelchair was waiting, but it was hard to leave her as we had this brand-new connection, so full of hope and renewal. She will do well and we will both remember that moment.

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 I do have something to ask. Ladies, feel yourself up like clockwork every month. Learn how they feel, even if they’re pea gravel, so if they change you will know. Also request a 3-D mammogram, even if your doctor whines that insurance might not cover it. Do it anyway. No one told me to do this kind and I’m certain if I had this would have been caught even earlier.

And lastly, be kind to yourself. Really kind. Because the Not-Benigns hate that. And more importantly because you are worth it.