I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.
Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”
Cancer does not respond predictably to treatment.
True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.
Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”
This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.
Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”
Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”
She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”
Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.
Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”
Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.
It’s been way, way too long since I’ve spent any time on this little blog. It’s been a rather busy time around here, with the start of school. Two new schools and a long drive to and fro (the schools to which my kids are zoned correspond with our new house’s location and not the location of the temporary house we’re crashed in while the building proceeds at a snail’s pace) makes for a rather truncated day. Couple that with the fact that high school and middle school start and end on rather opposite schedules (he starts early, she starts late), and I’m in the car a lot. A whole lot.
To those sweet souls who have inquired about whether I’m done blogging, here’s the answer. I’d speculate that I’ll be done blogging as soon as I’m “done” with cancer. Which will be never.
While it’s true I don’t have the “everyday” cancer to deal with anymore, it’s still around. Always around. I’ve moved past the “everyday” cancer — surgery, recovery, wound care, infection fallout, constant doctors’ appointments, sorting through mountains of medical bills, battling insurance, researching treatment pros & cons, yadda yadda — but it’s still around.
Case in point: minding my own business at a red light yesterday making yet another run to or from one of my kids’ schools and I glanced at the car next to me. On the back windshield is a HUGE pink ribbon sticker. I mean HUGE. It took up enough space to make me wonder how the driver sees out that window. And bam! cancer is in my face. I wasn’t thinking about anything cancer-related, yet there it is, always ready to insert itself into daily life. While I recognize the intent behind those who put pink ribbon stickers and magnetic decals on their cars, I don’t know that I will ever get used to the insidious power the dreaded disease has to permeate every aspect of life, even years down the road.
Another example: I overheard a conversation between two ladies at the gym about a mutual friend of theirs undergoing her third lumpectomy. Third. On the same breast. Again, I was minding my own business, sweating like a pro wrestler and sucking wind while I finished up my cardio. As I plucked my earbuds out of my ears, what do I hear over the sound of my own heavy breathing as my heart is pumping and my lungs are expanding and my muscles are burning and my brow is dripping? Cancer. More cancer.
I resisted the urge to insert myself into the conversation and tell those ladies to advise their friend to skip that THIRD lumpectomy on the SAME BREAST and instead strap on her battle gear because this beast is determined to take up residence in her. Cancer is very rude that way. Uninvited, unwanted. Always around.
In Cindy’s words:
I wanted to post my thoughts on the topic of invisible scars, and the darkness of hovering clouds for the cancer survivor. Throughout this document the words “cancer survivor” are loosely used, as cancer survivors are not always quite as fortunate as the words imply. Yes, their cancer is in remission, and that is incredibly wonderful! However … the survivor continues to spin, fearful of what may come next.Our visible scars are reminders of each step and path along the way of disease or injury. The invisible scars run much deeper. Even when the physical scar starts to fade in color and blend in with surrounding skin, the invisible scar residing just below it continues to prevail.For me, going through major health events, resulted in a darkness like no other. The darkness hovers, and follows me around like Charlie Brown’s friend PigPen’s cloud of dirt. This pesky dark cloud of dirt doesn’t magically go away, or even diminish. It’s a lifetime event. Actually, it grows with each late-effect side-effect issue discovered. I may be tricked into thinking it has finally subsided, but its still there, poised and ready to strike at any moment in some new unknown way.I will say, the invisible scars can show themselves in unkind outward ways. They are indeed ugly and evil on their own. Holding inside the frustrations of the incredible physical changes I’ve encountered over the past 7 years takes a toll emotionally and messes with my psyche. Occasionally, the frustration pours out, like a burst of bad energy. It’s the darkness of the cloud that never gives my pea brain a rest.
We all definitely have our day to day issues to deal with. Work, the car, the kids, the spouse, the toilet overflowed, the dog ate the cat, etc. A cancer survivor has those plus these invisible scars weighing them down.
“Sometimes I have to let go and mother myself, kiss the hurts away. Tell myself that sometimes bad things just happen. But writing about it helps a lot, it scrapes it out of the dark corner, holds it up to the light and somehow heals the wound. It borders on miraculous.”
I have no idea who wrote these words. If any of y’all know, will you tell me? This quote spoke to me, though, at some point, because I wrote it down, and today as I cleared off my desk I found it. Scrawled on a scrap of paper and placed in my “I’ll get to this later” pile, the quote has lingered, waiting for me to get to it. How very patient.
I’m pretty sure I didn’t write it (although I wish I had). Perhaps it spoke to me because of the idea of having to mother myself. Being a motherless daughter, I don’t often think about mothering myself, and yet I do. Making myself go to bed when instead I want to stay up all night reading my current favorite book. Being diligent about pulling that load of shirts out of the dryer and hanging them up instead of letting them sit indefinitely in a wrinkled heap. Wiping up the spills on the stove top now, not later, before they’ve hardened into an indeterminate glob of laminated goo.
In the early days of navigating life without my sweet mama, I actively avoided any mothering that might come my way. That hole in my heart was too new, too raw to allow anyone else to even attempt to approximate any of the things my mom did. Seven years later, I still eschew any overt mothering. Somewhere along the way, though, I must have started mothering myself a bit. I certainly don’t hold out any hope that the hurts can really be kissed away, although I do tell myself often that bad things just happen. Telling myself that doesn’t help my innate desire to question, to wonder about the reason, or to pick things apart in a futile effort to figure them out. Sometimes it just is.
Writing about the things, whether the bad things or the confounding things, does help. Perhaps that’s the line that most spoke to me in the above quote. Perhaps that’s the reason I jotted the quote on a scrap of paper and put it in the pile on my desk. I’m a big believer in writing as healing, which I why I sit in front of my computer, keyboard clacking away as the words fill the screen. For me, just getting the words out of my head and the thoughts onto the screen is therapeutic.
Writing about the good stuff and the funny stuff is important, but writing about the bad stuff is even more so. Like the mothering I inevitably do for myself, writing about the bad stuff helps make it better. Somehow it purges the toxic stuff from my soul and helps filter the insomnia-inducing worries that blanket me after the lights go out and the house is quiet. No matter how much distance I try to put between myself and the cancer “experience,” those worries return. Sometimes it’s the fleeting thoughts before a routine oncology visit, and sometimes it’s a more concrete feeling. Sometimes it’s a visceral assault, like the smell of the hospital that fills my senses when I’m just visiting. Sometimes it’s a random trigger that takes me back to the heat of the battle. Regardless of the form or the impetus, the worries remain. Hence the need to write. Hence the need to read the stories of others who have walked this path. Ray Bradbury explained it perfectly:
“If you stuff yourself full of poems, essays, plays, stories, novels, films, comic strips, magazines, and music, you automatically explode every morning like Old Faithful. I have never had a dry spell in my life, mainly because I feed myself well, to the point of bursting. I wake early and hear my morning voices leaping around in my head like jumping beans. I get out of bed to trap them before they escape.”
Knowing that I can drown out the insomnia-inducing worries with the “morning voices” is sublime. It borders on miraculous.
October 13. The day my mom died. It’s here again, and 7 years later, it still sucks.
They say time heals all wounds, but I say “heals” is a bit of a stretch. It’s more like time puts a too-small and not-so-sticky band-aid over the gaping wound where your heart used to be. They also say that you never get over such a loss, you just get through it. Whoever “they” are, they got it right that time.
I still miss her every single day, in one way or another. Her big, genuine laugh. The way she fretted incessantly. Her habit of always taking my kids’ side, even when they were naughty and unruly. The daily phone call, even when she had nothing much to report. Her ability to worm her way into anyone’s heart. Watching her in the kitchen, and marveling at how she knew how to get everything just right.
The list goes on.
I’ve written a lot in this little blog about how much I miss my sweet mama. I’ve read a lot about losing one’s mother. I’d like to think it helps, that it’s somehow therapeutic to get it out, to empty my heart and head onto the screen. When I come across a particularly interesting or helpful tidbit on the subject of mothers and/or loss, I jot them down. I usually forget to include the attribution, as I did here:
Motherhood isn’t a test but a religion, a covenant entered into, a promise to be kept.
No idea who wrote that or where I came across it, but I like it, and my sweet mama definitely embodies those ideals.
This one was in O Magazine, and again, I neglected to give credit where credit is due. To the author of these wise words, I apologize, but please know that your words moved me enough to pull out my iPhone, tap on the Notes icon, and copy the passage for quiet reflection at a later date:
You never get over what you lost. You always carry it with you, stitched to you like Peter Pan’s shadow. And you never wanted to get over it, because who wanted to forget a time that had been so important? No, the truth was, you wanted to remember it always.
I guess I’d say that it’s impossible to forget something (someone) so important. I do carry her with me, and I will never get over the loss of her. If I’m half as important to my two kids, a fraction as beloved, I will consider my life a great success.
I read a book review a while back about Caroline Kennedy’s book Jacqueline Kennedy: Historic Conversations on Life with John F Kennedy. (Whew, long title.) In the review, Caroline talked about how at age 53, accomplished and well-educated, she still referred to Jackie O as “mummy.” We never get over losing our mothers.
She went on to talk about the qualities she most admired in her mom, which she wanted to highlight in the book: the sense of strength, her passion for reading, and her will to move forward despite the pain that had come her way.
I can relate to that. My mom was amazingly strong, but in a quiet and gentle way. She loved to read and was a middle school English teacher in her life before becoming a full-time mother. And she had seen her share of pain: losing her own mother at age 13, raising her younger sister, losing that sister to pancreatic cancer, then enduring her own protracted and awful cancer battle.
I can relate to everything Caroline Kennedy says. My mom wasn’t as glamorous as Jackie, and I didn’t grow up in Camelot. I do have a brother named John, though; however my mama wouldn’t let anyone call him John-John or Johnny. Our neighbor across the street tried to call him Johnny, but my determined mama nipped that in the bud. She named him John after my dad’s uncle who immigrated from Greece. His name was John and she insisted that he be called John.
When Caroline Kennedy listened to the 8 hours of interviews between Mrs Kennedy and Arthur Schlesinger, which Caroline used to make up the book, she had a strong reaction. She says, “I read them right after mum died and had the sense she was speaking to me again. I could hear her saying what I was reading (smiles).”
What a precious gift. To hear my sweet mama again would be such a treasure. I have to work hard to remember what her voice sounded like. The more time that passes, the harder it gets. The more years that roll by without her, the less I feel like I know her. She seems to be fading from me.
I still call upon her a lot, especially in the kitchen. Just the other day, I was helping my favorite girl in the kitchen. She’s doing an ongoing bake sale to raise money for her class trip to Washington, D.C. and was baking my mom’s pumpkin bread. The house smelled sweet and spicy, the cinnamon, allspice, cloves and nutmeg redolent of fall (even though it was 90 degrees outside). Watching my girl take on a task (raising money for her trip), executing her plan, and carrying on my mom’s fine tradition of expressing her love through food made me proud. And sad. Because I knew how much my mom would love to see my girl doing her thing. She would fret over my girl, telling her to scoop the flour lightly, without packing it down. She’d say, fold the dry ingredients gently into the pumpkin mixture so the bread will come out light and fluffy instead of dense. She’d tell my girl to clean up as she went along, so that there won’t be a giant mess at the end. And she’d scold my girl for wanting to taste the batter; my mom grew up on a farm with chickens and was always leery of eating raw eggs.
I needed my mama that day in the kitchen with my hard-working girl. After the pumpkin bread baked and we let the loaves rest in the pan for 10 minutes, we knew to turn them out onto a rack to cool. But the still-warm bread was so moist it was very soft on the bottom, and I didn’t want the rack to make marks, or even worse, for the bread to stick to the rack. If we turned the loaves upside down, to rest on their tops, would the racks still make marks? What to do? Mom’s recipe didn’t address this important question, and although I’d seen her make pumpkin bread countless times, I couldn’t for the life of me remember what she did with the cooling loaves. And I sure couldn’t just call her up and ask her.
My mom and my girl didn’t get to spend much time together, because cancer stole YaYa from my girl when she was just 3 years old. No fair.
They didn’t have a lot of time together, but they made the most of it.
Read more about my sweet mama:
Yesterday I was picking up a prescription at Walgreens — finally one that has nothing to do with breast cancer or the post-mastectomy infection that plagued me for more than a year — and I smiled to myself as I waited in line behind the senior citizens getting their Lipitor and the mom with 3 small kids getting her flu shot (good idea, with those little snot machines attached to her every appendage, said the germophobe in me). I smiled to myself despite the fact that as soon as I walked in the door I was confronted by the display of “pink ribbon products” designed to “raise breast cancer awareness” and “help save a life.” Quotation marks very definitely mine, and intended to convey the maximum amount of snark possible.
I smiled in spite of having passed the pinked-up display of nail polish, glittery lip gloss, pink-ribbon bedecked emery boards, and “hope, faith, and a cure” shower caps (how in the world have I managed without one of those?). I smiled to myself because I was upright, in line at Walgreens under my own steam, having driven myself on a brilliantly sunny day without help from anyone. While my knee is still in recovery mode from the most recent repair, I’m for the most part healthy and able-bodied.
I’m healthy and able-bodied and going about my routine on a very ordinary day with no surprises like finding infection-riddled, 3-inch blisters that were hanging from my mastectomy scars like stalactites hanging from a cave wall. Like the sharp pain that literally felt like a knife blade stabbing through my chest wall as the nerves tried to regenerate after being sliced & diced, post-mastectomy. Like the shock of having caught a glimpse of my new profile in the glass of a store window. Like the pulse-pounding, breath-stealing fear of recurrence that plagues me and other cancer warriors on a regular basis.
No, no surprises yesterday as I waited in line at Walgreens. Instead of surprises, I felt a sense of happiness. A sense of calm. A sense of — dare I say — normalcy. Just an ordinary woman on a routine errand to pick up an RX for low thyroid. I’m far removed from the multiple trips a week to Walgreens that were necessary during the infection phase, and now that I get my cancer-related maintenance meds through the mail, Walgreens is not a place I make an appearance on a thrice-weekly basis.
I was a happy girl as the pharmacist handed me my new prescription, which will hopefully kick-start my lazy thyroid into gear so I can manage to not collapse at 8 pm every night like a cranky toddler. I was happy and calm and normal, until I swiped my credit card and the little machine asked me if I wanted to donate to the Susan G Komen for the Cure. There was the infamous pink ribbon logo atop neat little boxes offering a $1, a $5, a $10 or a $50 option to add to my pharmacy tab.
And just like that, my ordinary day turned on me.
This, my friends, is why I hate October. This is why pinkwashing makes me see red. This is why I rant and rail in this blogspace about the messed-up system that has deemed an entire month for “awareness.”
I AM AWARE OF BREAST CANCER.
Whew, I feel a little better. I wanted to do that in Walgreens yesterday, but I did not. I did not curse, stomp my feet, smash a single thing, or whack a single person. And for that I would like a medal. Or a trophy. Or a cold beer.
I’m glad that the grand poohbahs who run the Walgreens corporation place an emphasis on charity. I like charity. I think charity is a good thing. But come on, does it have to be Komen, and does it have to be so in my face all month long?? In all fairness, it’s possible that Walgreens does shove other charities down customers’ throats in other months of the year and this particular customer hasn’t noticed. But I’ve swiped my card at the pharmacy window many, many, many times at Walgreens and never been accosted by a “donate now” screen on the little machine. I’m quite certain I was swiping my card through that same machine many times the last 2 Octobers and did not see Komen with its hand out and its “Remember you had cancer, lady” banner flying.
Trevor and I had a lively discussion last night, and again this morning, about the whole pinkwashing/Pinktober/Komen/awareness issue. The course of the conversation ran from why all the pink makes me crazy, how unfair it seems that other cancers don’t get so much attention and hype, how the awareness idea has gone wrong, and which causes are worthy of pink dollars. The consensus was this: the time for awareness has long come and gone. We are all well aware of breast cancer. Komen did great things for breast cancer, and the awareness, in the early days. Members of the pink ribbon club owe Komen a debt of gratitude, IMHO, for de-stigmatizing the disease and for making it culturally acceptable to talk about breasts in a medical context. But there are many, many other deserving and hard-working charities that do more actual good for the women and men who suffer from breast cancer. I’m happy to see that some of those causes are gaining attention and getting a piece, or a few crumbs, of the Komen pie. However, we have a long way to go, which is why I’m compelled to yell my head off in this little blog about things like how precious little of Komen’s huge budget actually goes toward research. How infuriating the pinkwashing pandemic is to those of us who’ve walked miles and miles in pink shoes. How the blatant sexualizing of breast cancer makes me want to throw up and punch someone at the same time. How seeing a grown woman in a “Save the Tatas” shirt causes me to go all Serena Williams on her in the grocery store.
This is the reality of October for breast cancer survivors/warriors/victims/patients. And it stinks. I find myself counting the days until this month ends. That it’s also the month in which my sweet mama died from the insidious ovarian cancer that stalked her for years just adds to the misery. What I wouldn’t give for one day, just one day, in which cancer didn’t smack me — and millions others like me — in the face. Even on an ordinary day, cancer has the ability to knock me senseless and dare me to right myself and keep on keepin’ on, yet again. Cancer is such a bitch.