breast cancer, Encouragement, Health, hope

Cancer Close Out

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Joe with me and the cat resting after my surgery. No one focuses much on the partner of the patient, but it’s no picnic for them either. He’s been a rock.

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.

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This combo – red peppers, white and sweet potatoes and red onions – which my sister got me started on is so easy and makes me happy. My body too.

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’?

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With a diagnosis like this come supplements. Lots of them. These beautiful and colorful Etsy zippered cases keep them organized.

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.

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She’s watching over me still, helping me take good care. My mom, sweet Susan, also gave me her name.

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.

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This is summer (or maybe year-round sunshine) in a can. And a tall one at that. Delicious and just 2% alcohol. Try it. You’ll like it.

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.

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Homemade granola: the better breakfast option

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.

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The recently planted fescue and I are competing for who’ll get the most coverage the soonest.
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You can’t even part it because there’s not much of a crown on top, but it’s coming in for sure.

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.

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connection, Encouragement, Grace, Nature, Uncategorized

The Show Must Go On

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.

 

 

 

 

breast cancer, Encouragement, Family, Food, Health, self care, Sunshine

Hurry Up and Wait

IMG_7129Friday 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.

FullSizeRenderIsn’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.

IMG_7181In 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.

 

 

 

breast cancer, Encouragement, Health, hope, Love

Kill ’em with kindness.

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.

 

connection, Encouragement, Family, Grace, Health, Midlife

These Are Days

Each morning, I go down the hall and descend the 22 stairs. Another hall, then the dining room and kitchen. I turn the overhead light on, light over the sink on, and then the stove light. Check. Check. Check. Fill tea kettle and begin boiling water for coffee. A pilot flipping switches, warming up the engines.

IMG_3249The morning’s hamster wheel turns again – making breakfast, lunch (ok, you shamers, I’m up early and have the time, so I make the lunch), feed the pets and the whirl of the morning is over. Everyone is gone and it’s me again, dishes emptied and ready for reloading. Dog walk ahead, rental house tenant details, car emissions – will the old car pass? I’m busy and bored, gas and brake pressed together. My brakes are on and I can’t convince my foot to let go so I can roll. Don’t want to hit something, but I’m afraid I’ve already hit a wall. They say fear is excitement with the brakes on.

GRACE

PO: The post office in the town next to mine gets it. Three stations, three big hearts, all lifting you up. It’s an old timey brick building. No Saturday hours. Old ideals inside. A place that makes us each better. They know me, ask about my kids, take my trash even – used up stamp sheets, sticky backs of priority mail labels. They’d probably take your wad of chewed gum if you asked. Shipping can get complicated, and these folks always suggest the best timing and pricing. And when the lady postmaster sneezes, we collectively reply in hushed, loving church tones, “Bless you.”

IMG_3786Dry cleanerThis place and their clay tile roof building has been around forever. The guys inside, several of them brothers, know your name and use it. If they’re busy or you are, you can pay later when you return next. They have a sign by the register to discourage cell phone use that is handwritten and refreshingly kind and polite. We’re all better inside there on any day, busy holidays, heat of summer, etc. Inside, there’s a kind word. A smile.

Mechanic: You’re understandably frustrated the car is stalling, failing you. You’ve got better things to do and need a car to do them with. This place is tiny but full of understanding faces. The chairs are ripped, but you sit down and stay a while, laughing over automotive frustrations, talking of friends you share and the places you’re from and have travelled. The stress melts because people listen. You listen. If only for a moment, the car costs, the Uber you need to get home and the things you left undone can simply wait.

Pizza: Your local pizzeria is authentic pizza hand crafted by good people. Everything on the menu is a homerun. The staff is familiar and there’s a positive vibe buzzing inside. It employed your son years ago when he was in high school, and its owner supports the local schools, even coming in early once to make dozens of pizzas for your other son’s soccer team. Who does that? Pizza’s goodness on multiple levels.

zinniasThese simple errands bring life lessons. They rip open an ordinary day and inject it with a spirit that shines through you. Something about crossing that threshold, and you’re inside a safe space, a place where you go back to being your best self, stripped of competition, callousness, impatience. Here you have time to engage, spread a little warmth. Simple exchanges find you paying it forward as you head back out into the world, imbued with your best you that you want to share. You drive home in traffic with terrible drivers, the fuel light comes on and your phone has one bar. It’s okay for a while, but these bits, these little nuisances inevitably return, chipping away at your joy and take you back where you were before. You can always return to these places to refuel, but hopefully you’ll learn one day how to fill yourself up.

FAMILY

A rare recent Father’s Day had us eating brunch in Inman Park in Atlanta, three generations together, grandpa, father and grandson, sitting across from one another, countless memories between them, their own childhoods and those of their children, and then flying to New York to see our other son. Two boys, two cities, one dad who adores them both. My sons, my two hearts walking around, surprise me, invite me to wrestle with my own discomfort, and teach me about boundaries, trust and faith. To fly six states away for just a couple of days is to trust that love will seep in, do its thing and wash a familiar comfort over you, over all of us. The promise of that conversation over dinner, familiar smile and renewed connection is priceless.

HEALTH

frogYoga: “Visualize your jaw unclenching,” she instructed. So much for relaxing, that visual instead sent me to nightguards, root canals and crowns, decades of dental costs. I can’t help it, I’m English, I got the bad teeth. That morning, I drove the half hour to the Y where I unrolled my mat to practice before my favorite yoga teacher who it turns out wasn’t there that day. Instead, this broad-shouldered brown-haired girl led the class. I shouldn’t have been all judge-y, arms crossed and missing my teacher, as this instructor was kind and helpful, moving around the room correcting folks who got it wrong, me initially and later, me again. She wore a white t-shirt with graphics on it, maybe from Lake Burton or a sorority or a charity run, and Pullman brown yoga pants she could have lifted off a UPS truck. I’ll bet she can maneuver a ski boat with panache, settle into a slip at Hall’s Boathouse on Lake Rabun, and clean her own catch right there on the dock. She’s probably equally comfortable at the symphony, speaks several languages and knows the best BBQ joints, I’ll bet preferring North Carolina vinegary ones. She surprised me with her great music, too, starting with a lively song I recognized but couldn’t place, then moved into Adele 21, and REM, and even Sade’s By Your Side, that sexy song Richard and Samantha danced to in the Sex in the City pool scene. She must be hooked on that show, too.

She didn’t have that syrupy sweet voice you get sometimes, those instructors who are trying to relax you, so much so they almost put you in a trance, as if they’ve warmed your bottle and turned down your crib sheet. She did close the blinds in our room, darkening the space for her newborns down for their nap, but used a matter of fact adult tone which worked. It let us realize we are nurturing ourselves, not the YMCA doing all the heavy lifting. She’s creating the space, the framework, the movements, but it is up to us to find our own kind and gentle voice for ourselves.

c&t
The Captain and Tennille

Physical Therapy: Lie on your left side,” she instructed. Uh oh, here we go again, time to dry needle the hip. Like putting your finger in a socket or having your teeth drilled, dry needling literally gets on your nerves, sending jarring reverberations up and down your body, sorting out the spots that most need it. Waiting for her to begin, I focused on the bright exercise balls in the distance, zoning out to Toni Tennille’s voice, “I will, I will, I will, ahh-ahhh-I’ll be there to share for-e-ver,” one of many 70s gems piped into the place. I pictured her bowl cut, bangs and hair curled under in uniform Plasti-Coil precision, a curvy cascade matching her large round eyes and mouth. Was it a curling iron or hot rollers that gave her that look? In spite of their sweet glances and lyrics, love couldn’t keep The Captain and Tennille together, and after nearly 40 years, they divorced. Sadly, just this past year, the Captain, Daryl Dragon, died, Tennille by his side. Thank God my physical therapist can’t see into my monkey mind, because surely she’d fail to understand this detailed tangent, but one song, one note, can send you places.

I have far to go so that my weak hip and collapsed foot arch don’t bench me, wrecking my ability to run pain free. I’ll have to do the homework, draping myself over an exercise ball, sucking in my gut and pressing my feet behind me, working my glutes and resolve to get strong again. That ball which I ordered last week still sits in our playroom waiting for me as I scrub the colander, slick with spaghetti residue.

crete dress
Leaving the Lyle Lovett concert on my birthday, headed home for that second dessert

My recent birthday carb loading – dinner and dessert, then dessert again (Alon’s midnight cake afterwards at home) – lasted several days. That pasta I made yesterday, filled with my favorite things – shrimp, red pepper, onion, garlic, spinach, tomatoes, corn, all doused in a lemony garlic wine goodness — has left me sluggish. Despite loving the hefty portion I inhaled, I’m reminded what my gyn advised, “Carbs are not your friend.”

HUMILITY

Not sure why I’m so restless or what’s happened exactly, but likely it’s a classic case of smack dab in the middle aged-ness. I used to believe I’d beat the odds of getting that mid-life middle, that I wouldn’t hobble when I got out of bed in the morning, and that my skin tone would stay even, and not spotty like my grandmother’s. Mostly, I assumed I’d wise up, find work that would fill me up, harnessing my energy, creativity and enthusiasm. I’m realizing I’m still at that same fork in the road obsessed with getting my direction right. Or is it left?

And then I turn on the sobering news of late and I feel completely self-absorbed, shallow and in need of a mindset makeover. I’m still alive, aren’t I? It’s just that I hardly recognize myself some days, here at home with my ordinary puttering rhythm, going on almost two years now. There’s that feeling I haven’t done much yet – I’ve barely scratched the surface — and I’m sending myself regular reminders that I’m supposed to be farther along, yet other reminders that I ought to sit with this a bit, right here in this moment. I guess the instruction is take off the brakes and give yourself a break.

A sunflower I planted about to bloom

ENCOURAGEMENT

Finally, there are these three: brilliant writers and thinkers and strugglers, each chipping away like all of us are, who’ve shared their personal, yet universal insights, a few favorites I’m sharing, too:

The depth of the feeling continued to surprise and threaten me, but each time it hit again and I bore it… I would discover that it hadn’t washed me away. –Anne Lamott

We can choose courage or we can choose comfort, but we can’t have both. Not at the same time.”Brene Brown

“The women I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong and they handled it. They handled it a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes.”Elizabeth Gilbert

These are days

These are days you’ll remember
Never before and never since
I promise
Will the whole world be warm as this
And as you feel it
You’ll know it’s true
That you are blessed and lucky
It’s true that you
Are touched by something
That will grow in you, in you

These are days you’ll remember
When May is rushing over you with desire
To be part of the miracles you see in every hour
You’ll know it’s true that you are blessed and lucky
It’s true that you
Are touched by something
That will grow and bloom in you

These are days

These are the days you might fill with laughter until you break
These days you might feel a shaft of light
Make its way across your face
And when you do you’ll know how it was meant to be
See the signs and know their meaning
It’s true
You’ll know how it was meant to be
Hear the signs and know they’re speaking to you, to you

Source: LyricFind