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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breast cancer, connection, Food, Friends, hope

Hearts Wide Open

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

 

 

 

 

 

 

 

 

 

breast cancer, Grace, Health, hope

Be Positive

It’s no wonder I was given this B+ blood type, not only as a moniker of how I hope I am deep down, but as a benchmark of how I’d like to be, especially when meeting challenges.

It’s Friday the 13th, and for those who are superstitious, it’s a day when bad things happen. OR you could look at it differently as I am, as a day when IF something bad is going to happen, it might as well come out of hiding today and show itself and let ME decide if it is as bad as IT thinks it is. Taking the veil off scary situations and staring them in the face eye to eye gives you the power vs relinquishing it, gives you control and that optimism that you know is still there, that you know still shines brightly inside you.

These last few weeks I’ve been scared of a lot. Scared my health is going down the tubes, scared I won’t continue to be my usual bubbly energetic self, scared I’ll get chemo and feel and look awful. Today, this Friday the 13th, my doctor’s office called me and I learned that I will need chemo after all to eliminate any potentially lingering not benigns, which they say are gone, but so we can ensure they stay that way.

I’d like to announce today that I’m done wallowing in all this, so please don’t you. I’m beginning a period I’d like to call my drama drought. I’m rolling up my sleeves and getting to work. All the worry and whining will give way to smiling and winning.  And it’s Christmas time for crying out loud! I’ve got so much to do and good things on my plate.

I imagine I might feel kind of lousy after I begin this treatment (dates tbd after I meet with my oncologist one week from today), and while my beautiful hair might need to go dormant during this winter, like a lovely zoysia lawn does, I am still here. I’m as me as I ever was, and I am going to move through all of this happy and healthy, and with boatloads of “Be Positive” bright red blood coursing through me.

Just my update for today. I like thoroughness and this Friday the 13th, while a smidge disappointing, did its part, lived up to its reputation, delivering a full-on badass Friday the 13th. But just so we’re clear, I’m the bigger badass, so there.

I’ll close with Happy Friday, because it still is and I still am.

xoxoxo

 

 

breast cancer, Health, hope

C like cat.

As I made my appt with my medical oncologist last week, the scheduler on the phone gave me directions to Emory’s Winship Cancer Center, my close by radiation site. I couldn’t hear her well as she said the name of the place, so she reminded me it’s “C,” like cat. How nice that she shares my not benign way of talking! And how interesting that all of a sudden, I can say things like my medical oncologist, my radiation oncologist, when just a few short weeks ago I didn’t have any of these people in my world. But I don’t believe it feels quite the same as if you could say my pool guy, or my tailor, or some similar luxury person one might afford and for affectation sake feel inclined to refer to. I’m not showing off, really, but I can say I have my team, which of course includes me, and I’m confident we will all be taking excellent care of me.

So many refer to this path or journey I’m on, but I need to look at it differently. Imagine your fridge is packed to the gills and one day you discover there’s a moldy lemon way in back. You remove the lemon of course and notice it has released and left some juice and pulp and mold behind, clouding up your glass shelves. Now everything in the fridge must come out and you wipe down the entire fridge with hot soapy water, removing the shelves, the drawers, the butter dish and the door compartments. Next you assess all your fridge contents and decide what to keep and what to toss. Finally, you get a strong bleach cleaner and do a final wipe of the entire fridge, inside and out before putting back the contents. My little not benign mass was that lemon (of course way smaller) and I’m now getting ready for the bleach cleaner treatment.

If I were to call this my path or my journey, which we all know it is, it would feel like mine and mine alone. Referring to it that way, for me, makes me feel separate and I’ll admit a tad lonely, because it sounds more like I’m moving down some road, leaving all familiarity and friends who have stayed behind on land to continue doing their normal things, without some path switching up their plans. I picture Tom Hanks in the movie Cast Away taking his beloved Wilson along on his homemade boat as he set out on the big blue sea watching familiar land in the distance get smaller and smaller. I don’t want to be on that boat leaving what I know. Nor do I think I have to.

Instead this experience from Oct to date for me is rather a timeline. You remember the history timelines from grade school? Where there is a horizontal line and big round bullets popping up along the way, and vertical lines extending up and down from them with notable events and their dates? I’m on this timeline, having moved through a slew of significant dates already. I’ve got more ahead, but at some point, you get to the end of the timeline and no, I’m not talking about your own demise, but the end of the events which have made up this moment in your history. Later, you can step back and look at all you moved through and remember all the waiting between bullet points, wishing the next one would hurry and happen already, and how all the wishing in the world didn’t change the rate at which you reached the next bullet point.

I’m in that waiting mode now. Waiting on the Oncotype test results from the tissue they removed during my lumpectomy which will indicate how likely this strain of not benigns is to return. There is some numerical risk value this result will bring and I understand scoring 26 or higher means a greater risk for which they bring out the major artillery. I should hear next week and this value will chart the course of my treatment, tell me whether on top of radiation I also will need chemo. Not even sure the order I’d get them in either, if in fact I do need both. I’ve thrown a ridiculous amount of anxiety at this possibility and worried myself into tears, an unlimited stream that easily comes out of nowhere and which I’ve let run its long and winding course each time, leaving my eyes puffy and watery.

I’ve decided to hold on to a few positives, however: my dreams over the years have been quite telling. As horrible as this may sound, the night before my mom died I dreamed that she died. And what do you know, the next day she did. I had dreamed this dream once before earlier in her emphysema illness, but this second one I guess took. Certainly not my doing, but I found it interesting that it popped up in my dreams just the night before. All this said, the other night I dreamed I got my results and I only needed radiation, and the strain of radiation recommended would be super easy and manageable, and before you know it, I’d be cruising toward the end of this timeline, ready to daily pop that estrogen blocker pill I’m to go on for five years. I woke up in a hopeful mood, with less puffy eyes, and my outlook was energetic and largely normal. As if that weren’t enough to boost me, the next day I found a penny on the ground, heads up, which if you’re even mildly superstitious you might know is good luck.

My results will be my results. I will do what the doctors recommend, because while medicine fascinates me, biology is the only class I’ve ever failed, and so I’m not going to even begin to know any better or second guess these doctors. That poor biology grade was pure laziness on my part as I refused to memorize all the parts and pieces of these amazing bodies of ours, refused to put in the enormous hours required. Whatever course of treatment I am prescribed, I will keep moving through my timeline, and continue to move forward, checking all these things off my list. Of course, I would love this treatment to be easy and not make me feel or look bad, but in the end, I’ve got that gleaming refrigerator waiting for me at the finish line, and c’mon, who doesn’t love a cleaned out fridge?

 

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.