tentacles
Posted: June 10, 2014 Filed under: cancer fatigue, literature | Tags: cancer patients in movies, cancer recurrence, cancersploitation, chemobabe.com, Hollywood portrayal of cancer, John Green, Lani Horn, Nettie Horn, psychological effects of cancer, stress of cancer recurrence, Susan Gubar, tentacles, The Fault in Our Stars 4 CommentsI 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.
nettiehorn.com
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.
Always around
Posted: August 29, 2013 Filed under: cancer fatigue | Tags: being done with cancer, breast cancer in young women, cancer fatigue, pink ribbons, psychological effects of cancer, PTSD and cancer 11 CommentsIt’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. 
Invisible scars
Posted: March 27, 2013 Filed under: breast cancer, cancer fatigue | Tags: Dance Moms, late-effect side effects from cancer treatment, psychological effects of cancer, scars from cancer, Stupid Dumb Breast Cancer, Surviving Survivorship 16 CommentsIn 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.
Nature or nurture?
Posted: January 22, 2013 Filed under: breast cancer | Tags: Greek cookies, life after cancer, My Beloved World, nature vs nurture, psychological effects of cancer, Sonia Sotomayor, Sotomayor's memoir, Supreme Court Justices, Tamoxifen side effects, the new normal after cancer 12 Comments
npr.org
The literary world is abuzz at the memoir of Supreme Court Justice Sonia Sotomayor. Her book My Beloved World chronicles her early life in the Bronx as a part of a close-knit but troubled family. Her dad was alcoholic and died when Sotomayor was 8 years old, the same year she was diagnosed with juvenile diabetes. Her mom struggled to open herself up to happiness after a tumultuous marriage, and Sotomayor faced difficulties as a young Latina with big aspirations.
I’ve just started reading Sotomayor’s book, and already I’m hooked. In an interview with O Magazine, Oprah asked Sotomayor about a question that Sotomayor raises in her book: How is it that some people are faced with adversity and it makes them want to rise to the highest part of themselves, and other people, faced with the same adversity, get knocked down. Is that nature or nurture?
I’ve often wondered this myself, and never more than I have while enduring the cancer “journey.” What is it that makes some people wither under the strain of the disease, while others adopt a “take no prisoners” attitude and commence with the ass-kicking?
Sotomayer’s answer is not driven by cancer, but what she says applies to pretty much any adversity that comes along. She says that people who have been nurtured, presumably as young children by loving and involved parents, have the confidence to be optimistic and to try things even when there’s a risk of failure. She says “The test of your character is how often you get up and try again.”
I can only speak for my own experience, which was a Cracker-Jack idyll of childhood in a loving home with parents who believed in me and instilled confidence and optimism. Is this why I was able to face my cancer diagnosis head-on and without taking to my bed with covers pulled tight over my head?
I dunno.
Was it a by-product of my childhood, or was it from watching my mom endure her own cancer “journey” without a shred of self-pity? Even though her “journey” was a bazillion times harder and more trying than mine has been, she never once complained or said “I can’t do this any more.” She did every single thing required of her, even when her body was giving her every reason not to, and she did it quietly and stoically. The disease prevailed in the end, claiming her life and robbing her legions of loved ones of her presence, but she put up a hell of a fight.
There’s been nothing quiet or stoic about my “journey,” and many times I could imagine my sweet mama chiding me for expressing my frustration so vocally and with so many curse words. Many times I heard her voice in my ear reminding me to be patient with the slower-than-molasses healing. Many times I felt her gentle reminder to go easy on my docs, who were doing their best to help me (and if she were around, she would have baked them a loaf of bread or a batch of kourambiethes as a peace offering for the not-so-nice way I vented my frustrations in their offices).
I wish my sweet mama were here now, so I could ask her opinion of the nature-vs-nurture question. I think she would relate to Sotomayor on many levels. I know she would downplay the enormous gift she gave me by being a loving, nurturing, involved parent by telling me that it’s just what you do. And I’m pretty sure she would boss me and tell me to allow my kids to have dessert more often, because they need a treat.
Despite my sweet mama’s undeniable effect on my life, I don’t feel especially confident or optimistic these days. While the worst of the cancer “journey” is behind me, the toll it’s taken on my sense of self is great. The reality of creating a life after cancer isn’t easy, with body issues and fear of recurrence being key players. My hormone-blocking BFF, Tamoxifen, wreaks untold havoc on my body and has aged me at an alarmingly accelerated pace. The rigors of check-ups, follow-ups, and scans for new cancerous activity are wearying. The uncertainty of why a group of cells went haywire in an otherwise healthy body is unnerving and serves as a reminder that nothing is a sure thing: you can eat right, exercise, and be pro-active about your health and still fall victim to cancer. It’s not fair, it’s not right, yet there it is.
Perhaps this is a commonality the befalls those of us on this “journey” — like moving through the stages of grief. Perhaps it’s normal that at a certain point, after cancer is no longer the main focus of the majority of our waking hours, we realize how crazy hard the whole thing was and still is. Perhaps instead of being left with a sense of pride in having survived the worst-case scenario, we realize it’s a hollow victory. Perhaps once the adrenaline wears off, we’re left with the dull thud of reality saying, “You survived the worst, now whatcha gonna do?” As I’ve written before, perhaps the soul-crushing depression about the “new normal” that follows a cancer “journey” is what we’re left with when it’s all said and done. Add all of this to the confusion over whether we dodged a bullet by surviving or were dealt a direct hit right between the eyes by being diagnosed in the first place; then throw in a healthy dose of survivor’s guilt; and heap on the searing realization that all we endured is a walk in the park compared to other people’s “journey.” Considering all of this, it makes me wonder how anyone can rise to the highest part of themselves rather than being knocked down by adversity. Although I’m not sure how it’s done, I’m certainly glad Sonia Sotomayor raised the issue.
Trapping the jumping beans
Posted: November 26, 2012 Filed under: breast cancer, cancer fatigue, literature | Tags: Louise Erdich, missing mom, Motherless Daughters, psychological effects of cancer, PTSD, Ray Bradbury, writing as therapy 14 Comments“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.
I want my mommy!
Posted: October 13, 2012 Filed under: cancer fatigue | Tags: cancer and loss, Caroline Kennedy, cooking with mom's recipes, Jacqueline Kennedy, Jacqueline Kennedy: Historic Conversations on Life with John F. Kennedy, losing a parent to cancer, missing mom, Motherless Daughters, psychological effects of cancer, pumpkin bread 24 CommentsOctober 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.
My sweet mama and my favorite girl, at home the day after my girl was born
They didn’t have a lot of time together, but they made the most of it.
Read more about my sweet mama:
Cancer is such a bitch
Posted: October 10, 2012 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, cancer fatigue, I hate October, pinktober, pinkwashing, psychological effects of cancer, think before you pink 22 CommentsYesterday 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.
Odd girl out at the oncology office
Posted: July 11, 2012 Filed under: breast cancer | Tags: cancer battle, getting back to normal after cancer, life after cancer, post-mastectomy infection, psychological effects of cancer, PTSD, survivor's guilt 31 CommentsI’ve been on hiatus from blogging but rest assured, all is well. No real reason for the hiatus other than the fullness of life. Although I’ve not been wrapped up in the hurried pace of the school year, so far summertime finds me still going & blowing as usual. Less than three weeks until our annual vacation to Salisbury Beach, though, and I will slow down then. As the sage Zac Brown says, I’ll have my toes in the water, ass in the sand, not a worry in the world, a cold beer in my hand. Can’t wait.
Yesterday was my quarterly check-up with my cutie pie oncologist. My intrepid appointment companion Amy is currently living the good life seaside on the East Coast, so I had to go it alone. She strongly suggested I reschedule, lest she miss a visit with Dr Cutie, but alas, I carried on without her. She’ll have to wait until November to lay eyes on him, as I’ve graduated to three visits a year with him. That’s my reward for being two years out from the dreaded disease: fewer oncology appointments.
Despite one fewer chance a year to gaze upon Dr Cutie as he imparts his wisdom, this is a good thing because I found myself feeling guilty sitting in the waiting room. Of the four other patients waiting for the good doctor, I was the only one with hair. The others were not only bald but quite sickly looking (and a good 20 years older than me, as well). As I perched on a chair in my workout clothes, planning to hit it hard at the gym as soon as I got the requisite visit out of the way, I was filled with a sense of guilt over my good health.
I could feel the eyes of the other patients on me, and I imagined them wondering, as I would in their shoes, what a strapping gal with a full head of hair, color in her cheeks, and a spring in her step was doing at an oncologist’s office. Had the shoe been on the other foot, I would have assumed this picture of health was meeting someone there, or perhaps had found herself in the wrong office and had not yet realized the mistake.
My guilt was somewhat assuaged by the stark recollection that there was a time, not so long ago, when I was the sickly looking one, dragging myself from one appointment to the next, consumed with healing after a double mastectomy and overwhelmed by a post-surgical infection. I remember well the days of envying the “normal” people who walked with ease and were unburdened by the pressing concerns of cancer, treatment, and their ugly fallouts. Ditto for all the days (close to 30 days all told that one summer) I spent in the hospital. Pushing my IV pole on endless loops around the hospital halls, I would gaze longingly at the healthy people out and about and wish I were among them.
Although I’m two years out from the dreaded disease (or, two years and 2 months, as Dr Cutie so astutely recited from memory), the recovery process from the infection was quite lengthy, and it’s really not been all that long since I was freed from the clutches of that wretched bug. Many times as I moved from the infectious disease team’s office in the Texas Medical Center to Dr Cutie’s office around the corner from home and to the plastic surgeon’s office halfway in between the two, I stared hard at the healthier specimens I saw along the way. I remember feelings that ranged from outright envy to smoldering anger at these people who went about their daily business the way I used to. I envisioned these people getting their kids off to school, hitting the gym, running errands, lunching with friends, and doing household chores with ease, the way I used to. I imagined the fabric of their lives being uninterrupted by cancer, the rudest of guests, and assumed that they sailed through their days focused on minor inconveniences rather than big-time medical crises. First-world problems like a cancelled hair appointment or a rained-out tennis match were screechingly replaced by real-world problems like a hole in one’s chest wall that just won’t heal and an insidious bacteria that evades treatment quite stealthily.
Was it survivor’s guilt that hit me yesterday in the doctor’s office? Perhaps. I’ve never been one to wonder “why me?” — neither in terms of the roulette wheel of whose genes will come up hinky and necessitate a diagnosis, nor in terms of why am I now healthy while so many others are sick. Seems like a colossal waste of time and energy to me. I don’t spend much time thinking back about the sheer hell I endured with that nasty infection; partly because I don’t want to go there, and partly because my brain works hard to protect me from going there. There are plenty of gory details I have to work hard to conjure up, and while my intellectual brain knows that of course I did go through all that, my sympathetic brain says let’s not rehash that ugly past and prevents me from really remembering how awful it was. Better to smile encouragingly at the other patients in the waiting room and spend a few minutes of quiet reflection on the road I’ve traveled and how far I’ve come.
You can’t run from trouble…
Posted: May 20, 2012 Filed under: literature | Tags: bendy straws, bestselling books, Cutting for Stone, flashbacks, Gregory David Robers, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, running from trouble, Shantaram, Uncle Remus 22 CommentsIt’s a quiet Sunday morning, and I’m alone with my thoughts. I’m up earlier than I might have chosen, thanks to one hungry little piggy. After a Friday night of interrupted sleep and a Saturday full of tennis, errands, swimming laps and a late dinner with a favorite cousin, I may well have stayed in bed a while. However, savoring a slumbering house amidst hte sunlight pouring in through the trees and hearing the sweet sound of birdsong while sipping a cup of strong coffee is better than sleeping in.
Plus it gives me time to read my book, Shantaram, which I’ve been dying to dive into but haven’t found the time. It’s been likened to Cutting for Stone, one of my all-time most favorite books ever. If it’s half as good as CFS, I’ll be one happy reader.
Quick synopsis of Shantaram: Mr Lindsay, our protagonist, has escaped from an Australian prison and fled to Bombay. There he meets Prabaker, a native of the slums who renames Lindsay “Lin” and becomes his always-smiling, eternally joyful guide to the big city. Lin falls for Karla, a mysterious woman with sea-green eyes, and pursues her amidst the backdrop of a lively bar called Leopold’s. Lin is “a magnet for trouble, a soldier of fortune, and a picaresque hero” who delves into the black-market world of false documents. I’m not very far into the 944 pages of adventure, but am intrigued.
As I settled in to read this fine morning, I came across an especially well-written passage, which brought me up short. Lin is talking to his new friend Didier in the bar about some of the more unsavory patrons among them. In an effort to avoid being overheard by the bad guys, Didier was “speaking out of the corner of his mouth, like a prisoner under the eyes of the wardens.”
A nice metaphor, for sure, but it gets better:
“In Australian prisons, that whispering technique is known as side-valving. The expression spoke itself clearly in my mind and, together with Didier’s mannerism, the words put me back in a prison cell. I could smell the cheap disinfectant, hear the metal hiss of the keys, and feel the sweating stone under my fingertips. Flashbacks are common to ex-prisoners, cops, soldiers, ambulance drivers, fire fighters, and others who see and experience trauma. Sometimes the flashback is so sudden, and so inappropriate to the surrounding circumstance, that the only sane reaction is foolish, uncontrollable laughter.”
I had a flashback myself last week, and while it didn’t lead me to foolish, uncontrollable laughter, it almost set off a full-blown PTSD attack. I was rushing out the door to get one kid to school and head to the gym, my usual weekday routine. I’m a stickler for taking my own cup to the gym instead of using the styrofoam ones provided. As if our bulging landfills need another cup tossed on the heap. In my haste to get out the door, I grabbed a straw for my cup and scooted out into the garage and into the car. It wasn’t until I was into my workout and gulping water like a crazy person that I realized the new batch of straws I’d bought were bendy straws.
Big deal, right? Bendy straws can be useful, especially if one is reclining while drinking. Or if, say, one is hospitalized for countless days after a post-mastectomy infection. Yessiree, folks, a simple, innocent bendy straw sent me straight from my normal routine of a morning workout directly to the days of being captive in a hospital bed, held hostage by a nasty mycobacterium. Just as Lin was instantly transported from a bar in Bombay to the hated Australian prison cell, I was back in the hospital bed, raging with fever and sick, sick, sick while a nasty bug set up shop under my newly implanted tissue expander. A one-way ticket to Crazy Town in hand, I took the express train down (bad) memory lane.
I wasn’t even thinking about infections, hospitals, antibiotics, or breast cancer when the flashback struck, but I suppose that’s the nature of flashbacks. Triggered by sights, smells, or sounds or, in my case, straws, flashbacks take over and not only interrupt our present business but also disrupt the rest of the day with their nasty after-effects. Interesting how bad memories are just as powerful as good ones. Unlike the good memories, which fill us with warmth and comfort, bad memories suffuse our souls with fear, anxiety, and panic.
The bendy straw that triggered this particular flashback went straight into the trash, and I tried my best to go about my day like a normal person. Finish the workout, chit-chat with my fellow gym rats, reserve a tennis court on the way out, get in the car, drive to the grocery store, fill my cart, unload the loot, take a shower, pick up kids, supervise homework, prepare dinner, clean the kitchen. From the outside, I looked like a normal person doing everyday tasks, but inside I was anything but normal and was once again a cancer patient, fighting my way through uncertainty, confusion, and balls-out fear. In that moment, cancer made me its bitch, and there wasn’t a single thing I could do about it. The only thing keeping me from a total meltdown was knowing that this flashback would pass, that the terror brought on by a simple bendy straw was fleeting.
But as I talked myself off the ledge with soothing reminders that this too shall pass, I know just as certainly that while the terror will pass, it will also return. Again and again, this flashback will haunt me. Perhaps each time it becomes less rapacious, less capable of felling me in one swift motion, but it will return.
“You can’t run away from trouble. There ain’t no place that far.” ~Uncle Remus
Blog Party, APA style
Posted: May 16, 2012 Filed under: cancer fatigue, drugs, menopause | Tags: American Psychological Association, antidepressants, antidepressants used for conditions other than depression, beta blockers, Dana Jennings, insulin, menopause, Oncotype DX, psychological effects of cancer, PTSD from cancer, statins, stigma and depression, tamoxifen 19 CommentsThe American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
The Pink Underbelly 