I’ve completed treatment. The honeymoon is over. That warm swirl of homemade delivered soups, little notes and calls, and attentive doctors and nurses propping up pillows, encouraging me that I’m doing great is now behind me. Lumpectomy done. Check. Chemo over. Check. Radiation complete. Check. Now what?
I’ve had people ask me that same question. They look at me now as if I have some answers because, well, you know, I must be an expert on cancer. Wow I said it twice, did you notice? Once in the title and once in the text. Maybe I’ve reached that stage of grief they call acceptance? I hate saying the word because I don’t feel like a member of that club and the word wreaks of death looming, so it must be w h i s p e r e d or typed in italics. My thinking has been since it was enough stress to have had it, must I now say the word too? I’ve found there are plenty of ways to circumvent saying it.
Have you been seeing all those commercials for cancer treatment on TV? Maybe you don’t notice them, but there’s a preponderance. A soft female voice delivers the message for things like Ibrance, that promises you can now live in the moment even if you have metastatic breast cancer. Thankfully I didn’t have that type; mine was isolated to one tumor in one breast. But still, these ads call out to you, stop you in your tracks, flood you back and you always remember. Then come the warnings, also whispered: Ibrance has been found to shrink tumors in over half of patients. Ibrance can cause low white counts and serious infections that can lead to death. Be in your moment. Ask your doctor about Ibrance.
I’m afraid I don’t have any insights into why this happened to me, though in many respects I’m not completely surprised it did. My stress had been escalating – the same crap, the familiar loop that runs round and round in our head that we can hyper focus on but know we shouldn’t – and I’d been rather slack about healthy eating and drinking, and still without any meaningful sustained exercise regimen. The perfect storm where something had to give, and part of me is glad it did. You can’t sustain that kind of adrenaline indefinitely.
In all my fifty-six years, I’ve known just two people who’ve had this. One was a neighbor in an apartment complex I lived in in my early 20s and the other, a colleague of my husband’s. In the case of my neighbor, I don’t recall her specific situation, and only now do I realize that each person’s unique experience varies considerably. You can have cells that leave your breast and travel other places via your lymph nodes, bringing more unpredictability as to whether they can be wiped out, or you can have more destructive kinds, such as triple negative, a highly aggressive variety which can be hard to treat because its food source is so unclear. I don’t know the kind my neighbor had. I do know she was a smoker. Did that weigh in? There is no telling. I remember taking great pleasure when ordering her flowers after she got the all clear. I also remember her dying less than two years later.
I was heartbroken, of course, but dumbfounded too – didn’t they say she was cancer free? Evidently, it’s not that simple and clean cut. Perhaps hers seeped into her lymphatic system destroying other organs or was more aggressive from the get-go than doctors initially thought. I will never know, but I felt so let down, so gypped, having been so overjoyed, as she was, that it was finally over. It doesn’t feel good, this unusual, premature and unfortunate ending. Like being a bridesmaid in a wedding where the couple later divorces, but of course worse. The other woman who had “it” best I can tell has resumed a fully normal and healthy life, thankfully. I don’t know her well and so am not inclined to ask about her story. I’m not sure she even knows mine. The important take away is after all this, if you are thriving, then you are thriving.
You can’t sustain that kind of adrenaline indefinitely.
I don’t have a crystal ball for my own future, but at least I know more than I once did. That whispered term that I must type in italics, “metastatic breast cancer”, refers to cancer which started in your breast and later (typically within five years) pops up somewhere else – a game of Whac-A-Mole gone terribly wrong. After some women complete their treatment and go about ringing bells and running victory laps around infusion chairs, sometimes when they least expect it, it returns. When it does, I’m told it’s not as likely to show up in that same breast or even in the other one. The more typical scenario is it shows up elsewhere, such as in your liver or bones, which is called a “distant” recurrence, far from the initial source (breast). Unfortunately, even if yours was a low stage to begin with (mine was Stage 2), all distant recurrences appear as Stage 4 and are called metastatic because the cancer has metastasized, left the breast and spread to other organs. Many women die from this, yet some can live with it, but they must be all-the-more vigilant with extra therapies and medications and go forth with the real fear that they are never quite done. But are any of us who’ve had breast cancer? Can we ever lose the brand that’s stamped on us in our own minds and in others’?
When I first sat down with my Piedmont Hospital oncologist (hereafter, “Piedmont”) who had reviewed all my scans – mammograms, ultrasounds, bilateral MRI (both breasts), labs (bloodwork), pathology reports (analyzing the types of cancer cells I had) – he was very calm, like he’d done this a thousand times. Of course he had. He told my husband and me he was going to suggest a course of treatment and he used the analogy that the surgery I’d completed (the lumpectomy) was the cure and the follow on was the insurance. I wondered if everyone who sat before him got this same spiel, but it seemed as if this insurance parallel was one at which he’d just arrived, customized exclusively for me. He said it’s like he’s our insurance salesman, and he’s going to recommend the fullest coverage possible, which for me translated to four rounds of chemotherapy plus radiation. In addition to his cleanly scrawled regimen on the pad of paper between us, he scribbled percentages. If you’ve strayed by now, folks, come on back, as we’re talking survival here. I learned my odds are 80/20, an 80% chance this will not recur and a 20% chance it could. My eyes welled up hearing this because it sounded worse than I expected. I assumed since cancer hadn’t leaked into my lymph nodes we had a simple guaranteed solution on our hands: scoop it out with a lumpectomy, get your chemo and radiation and off you go, all done. An 80/20 scenario didn’t come with such guarantee. However since then, I’ve thought about it in a different way; I had to. When your weather report forecasts a 20% chance of rain, do you grab an umbrella? I know I don’t. I feel better now. Hope that helps you?
Did You Know? Lumpectomy + Radiation = Same Effectiveness as Masectomy
So I rolled on and finished up chemo and after a month-long break when it was time for radiation to begin, I sat before a different doctor. Piedmont suggested we schedule radiation at Emory so it’s convenient (Emory is just a few miles from my home) since I’d be going 21 days, consecutive weekdays with weekends off. During our 45-minute wait to see the radiation oncologist to whom we’d been referred, my husband and I read all the literature given to us, including this doctor’s CV. She graduated magna cum laude from Harvard University with a bachelor’s degree in biology, received her MD from Stanford University and completed her residency in radiation oncology at The University of Texas MD Anderson Cancer Center in Houston. Whoa! Harvard AND magna cum laude (AND Stanford AND MD Anderson)? She will henceforward simply be referred to as “Harvard.” It turns out Harvard and two of her esteemed colleagues had already reviewed my case in detail, poring over labs, scans, pathology reports etc., before she landed on what she decided would be my best course of treatment: 21 rounds of radiation – 16 over the whole breast followed by five targeting the cavity where the tumor, henceforth “Coward” had been lurking.
Like a child playing mom against dad, I of course had to ask Harvard the question: “Piedmont tells me I have an 80/20 chance. Do you agree with this?” She thought for what was a briefer moment than I expected and said, hesitantly, “While I don’t want to overstep your Piedmont doctor… (can you see my enormous smile forming?), I think you have much better chances.” Me, eyes wide open leaning in closer, “How much better?” “Over 90%” (or less than 10% however your brain processes it), she replied. Incredulous, thrilled, giddy all at once, I thought to myself, seriously? I would ask again at a few other appointments, just in case Covid-19 distractions and her full patient load undermined her ability to clearly think and call it correctly, and each time I got the same fabulous answer.
Unrelated but perhaps related, I am a twin. My brother, Benjamin Redfield Woody, died just a few days after birth from hyaline membrane disease (a breathing disorder which today would have been treatable). I can’t report feeling any magic force within me connecting us. Of course, when I have bad days and feel like something’s missing, I laugh to myself because something is missing, my other half, my twin. Those twins who feel the same things yet live far apart in different states or read the other’s mind aren’t me, though with my twin not being here, it’s not exactly a controlled experiment. But how about in the case of an amputated limb? I hear some amputees still have the urge to scratch that leg they no longer have. I wouldn’t expect if any of my limbs were cut off, I’d have any ghost limb experiences; mine would simply be gone. Even when I was pregnant, I could never answer those commonly recurring questions: When is the baby coming and do you think it’s a boy or a girl?
I don’t think being pregnant or having a twin or getting cancer magically renders you capable of predicting outcomes, bestowing on you a mysterious celestial insight others didn’t get. For me, getting cancer was initially of course a big shock, but then it became just a lot more doctors appointments and uncertainty and days you don’t feel great. A lot more. I never felt as if I’m knocking on death’s door, but have wondered how big my tumor would be now had I not shut down its shenanigans. I don’t feel like a warrior with pink boxing gloves who has kicked cancer’s ass. I do feel I was a good patient, ever listening and thinking and acting without delay in my best interest. I don’t want to tell cancer fuck you, or join in a big pink march. I believe it’s now gone so there’s no tumor to cuss out anyway. Instead it feels quieter and gentler, just between my body and me. A malicious foreign thing grew inside me and I kept playing its game of hide and seek until I found it. I didn’t intend to start this game, but that’s where my mom gets some credit too.
As I’m inclined to do, I analyzed and over-analyzed this situation a lot (I won’t say analyzed it “to death” because this is of course what we’re trying to avoid, being cancer and all). I think it was a guardian angel or God or my mom (or maybe they’re all the same or decided to merge for this one mission?) who was nudging me that October afternoon to feel both sides. Because who does that three months after a “normal” mammogram? Assuming it was my mom, isn’t it interesting that my treatment was exactly 4 rounds of chemotherapy and 21 rounds of radiation, since her birthday is April 21 (4/21). Who other but a mom to push you out of the way when a train is about to hit you head on? Totally my mom’s doing.
All this said, I am inclined to go with Harvard. While Piedmont has been great and still is, how can you not opt for the better prognosis? I mean it’s Harvard talking, and you can be sure I’m listening.
These days when people see me and ask how I’m feeling, I know what they are probably thinking: Has the cancer come back? Do you think it will? Sorry to report folks, but hell if I know, your guess is as good as mine. Going forward, all I know is I’ll be eating better, exercising more, stressing less – things we all should be doing, but now me more than ever.
My tumor was labeled as 100% ER positive, which means estrogen was the only thing it consumed to stay in the game. If you sweep up every estrogen crumb and wipe down the cupboard evermore, presumably Coward’s got nothing to eat and therefore can’t find any reason to return. Piedmont has me on a daily estrogen blocker pill (Arimidex), to ensure there’s nothing to snack on should the malignant munchies strike. I’m told such fabulous things as dairy and red meat and alcohol, which my cancer loved, can elevate my estrogen levels, and getting lots of exercise will oxygenate my blood, which cancer hates. So I’ve dropped red meat and most dairy (except parmesan, you can stay) and alcohol is minimal and very occasional. Recently I’ve taken to Stiegl’s grapefruit Radlers, just 2% alcohol and super refreshing, and I am moving more, or at least on days I’m not, I’m thinking about it, which I didn’t before. I’m trying to do the granola-with-flax-and-chia-seeds-splashed-with-almond-milk thing for breakfast, but when you’ve got a Publix puffy-sugar-studded-cherry-filled-triangle pastry staring back at you that your kids threw in the grocery cart, you don’t always make good choices. I’ve cheated and splurged on sugar, eaten potato chips, had several exceedingly delicious bites of bacon, but realize each day is a reset and more often than not, I’m leaning into pretty good choices.
I’m to continue taking my estrogen blocker pill every morning for the next ten years. It’s a bonafide treatment and after chemo and radiation, this third treatment will be the charm. It’s tiny, yet powerful, the same size of the birth control pill I used to take and the Synthroid I do now. Aside from its intended job, Arimidex also might make my joints ache. However, all I can report two months in is my right hand ring finger feels a little swollen and stiff. No big deal. To its discredit, this pill does plunge you into a menopausal sweaty never-can-get-the-temperature-right mode. Throw summer heat on top of it all and let’s just say showers are my friend.
Every three months I’ll go back and see Piedmont and he will do labs to check for any abnormalities. He said at these quarterly appointments he will just talk with me and look me over. He doesn’t believe in scans – calls them old school – but I believe in him. He’s my insurance guy and I’ll be damned if I’m going to miss a premium payment.
The good news is my hair is returning. I feel like Navan Johnson in the movie, The Jerk, and in lieu of Steve Martin’s character screaming, “The new phone book’s here, the new phone book’s here!”, I’m screaming, “The new hair’s here, the new hair’s here!” thrilled at the new crop coming in, daily checking for more.
Like the fescue that’s managed to push its way through the packed and cracked Georgia red clay in our back yard, bulldozed from the renovation underway, my hair is definitely coming back. I don’t see any signs of a grey curly brillo pad emerging as some warned, but instead see just the same dirty blonde I’m-in-my-mid-50s hair from before. I’ve got somewhat of a mullet going right now with the formerly bald sides filling in where the chemo cold cap didn’t fit well. My longer hair, which hasn’t been cut since October, still hangs down straggly, the last four inches or so blonde from last summer’s foils. However, in a baseball cap, no one’s the wiser. Why should everyone know? It’s a heavy enough burden for me to carry, so why sling it on others’ backs? As for the hair, I’ll even it up at some point, but it’s so nice and feels warmer and is a delight to see and feel my former partly bald scalp filling in. I’m heartened by this physical sign that I am healing and my cells are happily busy at work churning out new good things instead of just fighting off tumors and weathering chemo.
I’d like to say this is my last post about all this, but assuming it doesn’t return, and I am wholeheartedly making this assumption, I suspect I’ll still talk about it some more. My surgery date was November 21, so after each November 21 that goes by I will breathe an increasingly bigger sigh of relief. After five years, the chances are far slimmer for a recurrence, and after ten, I will be “cured,” and Piedmont says I won’t need to see him anymore. This experience is now forever with me and a part of me. I hate that it showed up but love that it is gone. I love myself for pushing for answers, pushing through treatments and pushing for something better now that I’m on the other side. And if you’re still here after all these words, I love you for sticking with me. A big love fest all around. And just so we’re clear, Coward, you’re not invited.