No end to the drug therapy
Posted: July 24, 2014 Filed under: Uncategorized | Tags: da Vinci hysterectomy, femara, infection after mastectomy, micobacterium fortuitum, nosocomial infection, psychological effects of breast cancer, side effects of femara, side effects of tamoxifen, tamoxifen, tamoxifen vs femara 14 CommentsMisguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”
Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.
Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.
However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.
I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.
It’s never enough.
While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.
Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.
My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.
The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.
All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?
It’s never enough.
It’s never over.
THIS is breast cancer awareness, people
Posted: October 24, 2013 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, breast cancer awareness month, breast cancer in young women, David Jay, NFL goes pink, NFL's A Crucial Catch, pinktober, pinkwashing, psychological effects of breast cancer 16 CommentsThis. 
Not this. 
This. 
This is breast cancer awareness.
The SCAR Project is in town. My town. I went yesterday. What an experience.
I was dilly-dallying around about going and trying to convince myself that I am too busy to take time out of my jam-packed schedule. Truth is, I was a little nervous about going. I was nervous about seeing the incredibly powerful images and then confronting the emotions they would inevitable bring to the surface. I’m 3 1/2 years out from my diagnosis, yet I know that at any given moment, cancer can upend my “new normal” and bring me to my knees.
I suspected that seeing The SCAR Project images, full-size and in person, would upend me and bring me to my knees. They did.
I’ve seen the images online and in my copy of The SCAR Project book, one of my most-treasured gifts (thank you, Trevor). The book is available on Amazon.com; click here to order your copy.
Seeing them in person, however, is a completely different experience.
The exhibit is housed in a small gallery in the heart of Houston. On my short walk to the gallery I passed this lovely shrine in someone’s front yard.
I certainly hope I didn’t offend by snapping a quick photo. I don’t see things like this in the ‘burbs where I live.
Nestled into a quaint neighborhood surrounded by bustling businesses, Gremillion & Co Fine Art, Inc., is spartanly understated. The lush greenery surrounding the modern-but-not-out-there building and the pieces of sculpture flanking the gallery speak to the idea of popping inside for a quick fill of art in the middle of the day. 
I gotta come back in the spring and see this wisteria in bloom.
Some of the sculptures surrounding the building.
This gate leads into a little courtyard to the side of the gallery; a serene spot in the middle of the city. 
Enough stalling. Time to go inside.
There’s a sign on the gallery door that requests that visitors keep their conversations to a minimum and in a whisper because of the gripping, emotional response people have had to the photographs. While some not so intimately acquainted with the beast that is breast cancer might find this intriguing and perhaps even titillating, it did not have that effect on me. I felt certain my initial misgivings about witnessing the photos were true.
A small table filled with programs and copies of The SCAR Project book stands in the entrance. A cut-out window just behind revealed a man eating lunch, and I realized that man was David Jay, founder and photographer of The SCAR Project. I asked the docent if that was indeed him, and she nodded. I told her that I’m a survivor who greatly admires his work. She said, I thought you might be a survivor.
How did she know? What caused her to suspect? Perhaps the majority of visitors to the exhibit are. Or perhaps she read the fear and trepidation in my eyes. Either way, she smiled sympathetically and stepped away. Next thing I know, David Jay is standing right beside me, saying hello. Wow. I told him how much I admire his work and how grateful I am for him telling the real story. Not the “prettied-up, pink ribbon” story. He nodded and said, “That’s why the subtitle of this project is ‘Breast Cancer Is Not a Pink Ribbon.'” Amen, brother.
In the exhibit program, Jay is quoted as saying, “Still, through all of this, there is beauty. Soul. Courage. These are the things which cannot be taken away.”
Jay told me that he never envisioned working on this project, but that after a friend was diagnosed, the project was born. His mission: to show what breast cancer really looks like, especially in young women; to fundraise for research; and most importantly, to empower the women who have been affected and to hopefully allow them to see the beauty, strength, and resilience in the aftermath.
“For as long as I can remember, I have struggled with body-image issues. Losing my breasts and developing thick, red scars across my chest only made matters worse. I could not bear to look at myself in the mirror. I hope that being a part of The SCAR Project will help me to see something beautiful for a change. Maybe it will help me appreciate my body….It has, after all, created and sustained two new lives; it has fought cancer and won. It’s time I started giving it, and myself, much deserved respect. Maybe if my scars were viewed as art, it would help me to heal.” — Gabrielle, age 30
“The most important part of being photographed was that it made me feel beautiful. It was an opportunity for me to stand tall and strong with my scars and redefine my beauty for myself.” — Emily, age 32
“My challenge has been and continues to be to accept the sorrow, focus on the joy, and remember to share both with the ones I love. Survival is about more than breasts: it is about courage, strength, and the many other attributes that make a woman beautiful.” — Jill F, age 28
Barbie, age 36, served 18 years in the U.S. military before being diagnosed with breast cancer. 
In her SCAR Project bio, she says that “a weapon, a FLAK jacket, and a Kevlar helmet didn’t protect from THIS enemy.” She goes on to say that “I am not going to ever get over breast cancer or move past it. I will love with it for the rest of my life. Remission is not a cure.”
Not surprisingly, scars are a recurrent theme among the women featured. “My scars are powerful lines that point to hope, faith, and love.” — Candice, age 30
“Our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but of living.” — Eliza, age 22
Some of the quotes by the women featured are so sad, yet so true:
“Cancer does not discriminate; it doesn’t care who you are.” — Jessica D, age 22
“An East-Indian girl, I was a mother to a toddler who fed from cancerous breasts for 20 months. A wife to a husband who left because he feared what my cancer would do to his life. A sister to a man who didn’t know what to say, so said nothing.” — Sona, age 36
“Cancer took so many things from me, but the one thing I may never get over losing is my sense of security. Blood work and tumor markers allow me to live my life in 18-month intervals, but cancer is an unpredictable beast.” — Toni, age 28
“I lost all of my hair, looked like ET, got my boob hacked off along with 9 lymph nodes, got zapped by so much radiation my skin burned and bled, and will need to cut open my stomach and relocate my fat and muscles to my chest. I think sometimes I am so good at putting on a pretty face and acting all put-together that people don’t realize the extent of everything that breast cancer survivors go through. My scars and words are only half the story. They don’t show the emotional and private struggles that are continuously present.” — Vanessa, age 25
Something else Vanessa said really resonated with me: “I’ve never wanted to be the center of attention, or to be regarded as ‘special’ or ‘brave.’ I don’t need to be pitied or felt sorry for. In life, there’s a beautiful balance of happiness and sadness, awareness and unawareness, acceptance and rejection, blessings and misfortunes. These dualities are the moments that define life.”
Not all of The SCAR Project women survived. David Jay tells the story of Jennifer, age 27, who could not travel to New York for her photo shoot because her cancer had spread to her liver. She wanted to do it, though, and asked Jay if his studio had wheelchair access because she could no longer walk up the stairs. Jay told her, “Just come, I’ll carry you up the stairs if I have to.” She never made it to New York.
Each of the women featured in The SCAR Project has an important story to tell. Each has experienced things that profoundly and permanently changed them. Each faced the terrifying reality of cancer at a young age.
This wall of images represents each woman’s story and each woman’s struggles. It is moving beyond words. Not just for those of us diagnosed with the disease, but for all of us as human beings.
As I left the exhibit, I saw David Jay outside, on his cell phone. I waved to him as I walked past to my car. Pulling out of the garage, I thought, I should ask him to sign my program. But I didn’t want to interrupt his phone call. What to do? What to do? Interrupt him. Ask him.
So I did. 
For more information, go to http://www.thescarproject.org. Follow The SCAR Project on Facebook and Twitter (@thescarproject). Watch the Emmy-winning documentary Baring It All and purchase The SCAR Project book.
Wordless Wednesday, HAWMC
Posted: April 3, 2013 Filed under: breast cancer | Tags: breast cancer and young women, David Jay photography, HAWMC, psychological effects of breast cancer, The SCAR Project, WEGO Health 12 CommentsDay 3 of the Health Activist Writer’s Month Challenge:
“Wordless Wednesday. Post a picture that symbolizes your condition and your experiences.”
My first thought was of the many powerful images in David Jay’s The Scar Project. I’ve written about this amazing body of work here and here. The photographs are raw and real, just like cancer itself.
David Jay Photography
In 30 years…
Posted: March 12, 2013 Filed under: breast cancer, cancer fatigue | Tags: average life expectancy, breast cancer and young women, diagnosed with breast cancer at 40, living with cancer, metastatic breast cancer, nosocomial infection, psychological effects of breast cancer, PTSD and cancer, the crow yoga pose, the wheel yoga pose, vinyasa yoga, yoga 14 CommentsYesterday walking out of yoga with my favorite girl, I was relaxed and refreshed and thoroughly enjoying the first day of spring break. On our way to the locker room, the woman walking ahead of us turned to compliment my girl on beginning yoga at such an early age. My girl beamed in her ineffable way and chatted politely with this woman while I, the eternal germophobe, washed my hands. My girl gave me a look that said, “Seriously, Mom, the only thing you touched was your own personal yoga mat, so why are you scrubbing your hands like that?” Such is life after a nosocomial infection.
My girl and the woman discussed their most-favorite and least-favorite yoga moves, and after a short debate on the wheel and the crow, the woman told us that she’s been doing yoga for 30 years. My girl’s eyes grew wide at this, and I imagined her picturing herself 30 years from now, a most experiences and tranquil yogi.
Rather than smiling at my girl’s fledgling love for yoga, I was struck by a moment of panic and a most unwelcome thought: Will I even be alive to do yoga in 30 years?
Not to be morbid, but this is life after cancer.
When I was diagnosed at age 40, my breast surgeon told me something that has stayed with me through the worst parts of fighting this disease. Worse than facing the reality of losing both breasts as I faced a bilateral mastectomy at a time when most of my peers were reclaiming their bodies after years of childbearing and breast-feeding. While many of my friends were undergoing elective cosmetic surgery to perfect their post-baby bodies, I instead was looking at pamphlets illustrated with grey-haired grandmotherly types considering their surgery options.
My sweet breast surgeon imparted a fact about my life after cancer: that I would spend more years fighting this disease–whether actively (swallowing an estrogen-blocking pill every morning for 5 or 10 years) or inactively (chasing fears of mets from my mind on a daily basis)–than I had been alive.
And that’s the best-case scenario, in which I actually live more than 40 years with this disease rather than succumbing to its terror, as is the case of some 40,000 women in the United States every year. Of course my sweet breast surgeon was thinking best-case scenario when she told me this, and at the time I had no earthly idea how much mental havoc this disease can wreak. Had my sweet surgeon predicted or warned me that on any given day, even years after I had allegedly slain the beast that is cancer, that beast would have the power to plant such thoughts in my head as that which brought me up short yesterday after yoga, I would have likely run screaming from the room.
Would I even be alive to do yoga in 30 years?
charmedyoga.com
What kind of thought is that??? That, my friends, is the power of cancer. It can erase the calming, centering effects of yoga in a single bound. It can swipe the joy of the beginning of spring break in one fell swoop. It can plant a seed of recurring fear and doubt with the greatest of ease.
The Social Security Administration estimates that the average life expectancy for a female in the US these days is 85. Simple math tells me that best-case I’m looking at 45 years post-cancer. More years fighting it than years I’ve been alive. Even with low recurrence-rate predictors and stellar care from top-of-their class physicians and access to always-improving tools that monitor my cancer’s efforts to reinstate itself, the recurring fear and doubt prevail. Within two minutes of bidding my yoga instructor namaste, cancer had infiltrated my thoughts and led me to wonder what my chances are of being the grey-haired grandmotherly type rolling up my yoga mat and heading to class.
charmedyoga.com
I know, I know, we residents of cancerland are supposed to think positive. We are advised by all manner of sources–both sought-after and unsolicited–to assume the best. We are told to visualize it and believe it and it will happen. We are told that what’s meant to be will be.
But that doesn’t stop the automatic response that cancer brings. I can think positive and assume the best and visualize and believe all I want. I can employ every cancer-fighting weapon from pharmaceuticals to superfoods. I can hope and wish and pray to the anti-cancer gods. But cancer will do whatever it damn well pleases, and if it wants to come back and rudely interrupt my life, it will. If cancer wants to cut short my plans of doing yoga for the next 30 years, it won’t think twice.
That, my friends, is the power of cancer.
Everyday wonders
Posted: January 11, 2013 Filed under: breast cancer, cancer fatigue, kids | Tags: breast cancer in young women, kids birthdays, kids' birthday parties, life after cancer, nature, psychological effects of breast cancer, savoring the little things, squirrel on a wire, squirrels, Tumblr animal photos 17 CommentsDriving my favorite girl to school today, my head was full of thoughts of all the things I need to get done. It’s her birthday weekend, so we have a jam-packed schedule of festivities, which means much to do before we celebrate. I was running through my mental to-do list and chatting with the birthday girl about the cookies she would hand out to her classmates on the funny monkey napkins. Our spirits were high, although I felt my inner throttle revving up, readying my body and brain to rush from one task to the next in a balls-out effort to get ‘er done. Get all of ‘er done.
This is one aspect of myself I don’t relish. I’m always in a hurry, rather impatient, and tend to rush through the journey to get to the destination. I’m not a “smell the roses along the way” kind of girl. Perhaps this is common in overachieving busy-bodies. Or in the legions of other suburban at-home moms whose work is never done in ferrying children to and fro and ensuring there are adequate provisions to keep the troops clothed and fed. Or maybe it’s just me.
Anyhoo, there I was in the car with my girl en route to school, thinking about going to Walgreens to pick up yet another prescription; hitting the grocery store for kid wine (sparkling cider) for tonight’s kid party and for crayons for my girl’s science fair project; going to the gas station to fill up and get a quick car wash, as well as scratch cards for the birthday girl (yes, gambling starts early around here, and the fact that my girl requests scratch cards for Christmas and her birthday is an insight into her wacky personality); driving my other kid to school; gathering the stuff for the party-favor goodie bags; wrapping the gifts; sweeping, mopping, dusting, and freshening the powder bath since the party guests will arrive this evening and I’m the whack-job type who thinks the house must be spic & span before guests invade; and cleaning out the twigs & leaves that fall into the back seat of my car on top-down days, since the party guests will be riding with me.
Just when I thought my full-to-the-brim brain might overtake me, the universe intervened and saved me from myself.
As we traveled down the street, we drove under a wire that stretches across the road, up high. Maybe it’s a telephone wire, or perhaps a DSL cable. I don’t know; I’ve never even noticed it before, but it traverses the street I drive up and down a thousand times a week, every week. Today as I traveled that street, a fat squirrel was dashing across the wire, doing a squirrel tight-rope act. The movement caught the eye of my girl, who spied the bushy-tailed performer through the open roof of the car. We slowed down, literally and figuratively, to watch. I slowed even more when I realized that if that squirrel fell off that wire, he’d plop right into my car. While my animal-loving girl would love that, I didn’t relish the thought of it.
With no cars behind us, we slowed to a crawl to watch the rodent acrobat scurry across the wire, high above the road. His tail bobbed in the air as he ran across that wire, and I imagined his little squirrel hands (paws?) gripping tightly. My girl wondered aloud if he was nervous or confident in his attempt to cross the road, and that naturally led to her ad-libbing a few “Why did the squirrel cross the road?” jokes. Ahh, the humor of an almost-11-year-old.
Our squirrelly performer trucked across the last length of wire, safely making it to the other side. The punchline to the “Why did the squirrel cross the road?” joke that most tickled the girl making them up was “Because he needed to scratch his butt!” The squirrel was gone, and a car approached, forcing me to move forward. As we neared the school, my girl said, “Mom, I’m sure glad we saw that squirrel on the wire. That totally made my day.” And then I realized: while the jam-packed to-do list seems so important, and completing those tasks to ensure a kick-ass birthday weekend for my favorite girl is important to me, what’s really important is noticing the moments of everyday wonders, and savoring them. The squirrel on the high-wire smacked me in the face with that realization. My girl re-affirmed it.
Much has been written, on this blog and elsewhere, about how surviving cancer can make one appreciate life even more. I will never, ever, ever say that cancer is a gift or that it’s changed my life for the better or that there is a silver lining under that dark cloud that so rudely interrupted my life with disease, infection, and worry. Never. I appreciated my life and the bounty of good things in it just fine without having to lose my breasts and a chunk of my security along with them. I lived life out loud before cancer robbed me of my belief that if you do the right things and try your best to be a good person, that bad things won’t happen. I gave thanks for the friends and family and privileges that exist in my life before this wretched disease snuck into that thankful life and dislodged my sense of me. I realized that random fate of being born in the time, place, and family I was born into was as much a player as hard work in creating this charmed life, and I knew that before cancer entered and laid waste to my body. I appreciated the little things in life, and knew in my heart that it’s those things, not a new car or a big house, that lay down a basis for a fulfilling life; I certainly didn’t need cancer to bully me into realizing this fact.
Surviving cancer and an insidious infection didn’t teach me to appreciate life’s everyday wonders. But a squirrel on a high wire sure did.
tumblr.com
Tattoos gone bad
Posted: December 11, 2012 Filed under: breast cancer | Tags: bad tattoos, Ink Masters, psychological effects of breast cancer, self-esteem issues after breast cancer, Spike TV, Tattoo Nightmares 9 CommentsMy favorite girl has odd taste in TV shows. She’s a big fan of reality shows, and at first I mistakenly thought that the people on most of these shows are such idiots there’s no way that’s reality. Then I came to my senses.
Her latest reality show craving is for “Ink Masters” on Spike TV. It’s a competition among tattoo artists, and as you might expect, there’s plenty of tattoos, drama, and cussing. Why my 10-year-old is drawn to this is a mystery to me.
While home sick with a fever, sore throat, and congestion, my favorite girl was bundled up in my bed with Vicks Vapo-rub on her chest and a mug of hot tea on the nightstand. She happened upon a new tattoo show called “Tattoo Nightmares.” The premise is simple: people who have a bad tattoo come to the “Tattoo Nightmares” gurus who transform their unfortunate ink into something respectable, lovable, or maybe just bearable. The casting call for this show reads like this:
“Crazy ex-relationships, drunken dares and college nights, there are many instances where a decision made can haunt you for the rest of your life, especially if it is made permanent in ink. High school sweetheart not so sweet anymore? Sick of your husband, Steve, asking you who “John” was? Flash art lost its flare? Wish it were still the days when tribal tattoos were cool? Did you find out what that Japanese symbol on your shoulder actually means? Tramp stamp tattoo not fit the prude you? You lived the memory, you loved the ink and now it has lost its luster.Do you or someone you know have a great story as to why you want to cover up your ink? Doron Ofir Casting is looking for people who made a mistake in ink and want the chance to re-do their tattoo. Tattoo Nightmares – Waking up from 1 terrible tattoo at a time!”
I prefer my girl’s synopsis of the show: “These are some of the best tattoo artists in the country, so if your tattoo is ugly or really messed up, of course you’ll go to them.”
Of course.
Some of the bad ink that tattoo masters Big Gus, Tommy, and Jasmine have fixed include a giant pot leaf on a guy’s wrist that was (gasp!) impeding his job search and a guy who got his son’s initials scratched onto his chest while in prison, but there was a little mix-up — as there often is with prison tattoos — and the initials were transposed. I guess once the guy got out of the big house, his kid didn’t appreciate seeing his initials scrambled on dear old dad’s chest.
It’s estimated that 40 million Americans have at least one tat, so it’s not surprising that some of that ink would stink. The fix-it masters on “Tattoo Nightmares” claim they can transform an ink disaster-piece into a masterpiece. They needed to call on every ounce of their creative genius to help a girl named Erica out of her tattoo nightmare. She walked in with this:
and told a sad tale of woe about meeting a guy in a liquor store and admiring his tattoos. Apparently he offered to tattoo her, and she happily chose the Los Angeles skyline. Once her new BFF began etching the tattoo on her belly, she realized his pupils were huge and he was acting erratic. She concluded that he was on drugs and was freehanding the fine art she expected from him. She began to regret her decision to have a total stranger perform some ink art on her. I never saw that one coming.
Erica was rather emphatic about how much she hated her tattoo, which “looked like it was drawn by a child,” and she implored the “Tattoo Nightmare” experts to help her because, and I quote, “This tattoo really affects my self-esteem.” She went on to explain that she doesn’t like showing her stomach because of the terrible tattoo, and asked the experts if they have any idea how hard it is to find a cute one-piece swimsuit.
That is a problem.
I sure hope that poor Erica is lucky enough to dodge the bullet that hits nearly 300,000 women in the United States every year. If she feels bad about her body after a bad tattoo, can you imagine how she’d feel after undergoing a lumpectomy that left her breasts uneven and lumpy? Or a single mastectomy that resulted in that cursed asymmetry and the super challenge of finding bras and clothes that camouflage the difference? Or God forbid she undergoes a bilateral mastectomy, with or without reconstruction, and has to deal with the myriad fallout from that cluster-bomb.
I’m sure glad that girl got her tattoo fixed 
so she can finally feel good about herself again. Thank heavens she doesn’t have to worry about that mess anymore. I bet she never did find a cute one-piece swimsuit.
Welcome to Cancerland
Posted: November 8, 2012 Filed under: breast cancer, cancer fatigue | Tags: 5 stages of grief, 7 levels of the Candy Cane forest, Buddy the Elf, Elf the movie, Kubler-Ross model, life after cancer, new normal after cancer, psychological effects of breast cancer 23 Comments
polyvore.com
Like the 7 levels of the Candy Cane forest outlined by Buddy the Elf in the movie Elf, there are levels in Cancerland. The levels in Cancerland aren’t nearly as fun as those in the Candy Cane forest; I’ve yet to come across anything approximating the swirly, twirly gum drops at any point along this cancer “journey.” I don’t know what the official levels in Cancerland are, or if they even exist outside of the esoteric nature of those saddled with the disease, but I suspect they are akin to the 5 stages of grief. So for now, let’s say that the 5 stages of Cancerland include utter shock upon being diagnosed; extreme pissed-off-edness at losing body parts and quality of life, coupled with the potential for losing my life itself; crippling helplessness and a total lack of control in regards to recurrence; unpredictable fear and panic at any given time; and soul-crushing depression at the “new normal” that follows a cancer “journey.”
Today I ran smack-dab into level 2, the extreme pissed-off-edness. Sometimes this level manifests in its pure form, which is flat-out anger at the wrongs done to my body & mind by cancer. But sometimes, like today, it’s a more specific form of pissed-off-edness: extreme irritability. We’re talking the worst PMS rage multiplied by a prime number, divided by the number of times the urge strikes to choke someone, subtracted from the complete absence of rationality, added to the utmost amount of self-control required to avoid screaming and spewing at anyone who’s unfortunate enough to cross my path.
When this specific phase of pissed-off-edness hits, woe be unto the person who absent-mindedly leaves their shopping cart parked in the middle of the aisle while they price-compare cans of soup. I pity the fool who on the road ahead of me who finds him/herself in the wrong lane and stops in the middle of the road instead of continuing along with the flow of traffic until able to execute a U-turn or otherwise get the hell out of my way. Too bad, so sad for the person who lingers at middle-school drop-off in the morning to wish their child a good day or to remind that child to do their best in all pursuits today. Move it or lose it, people.
Today the specific phase of pissed-off-edness reared its head and tried my patience and self-control in many ways. Allow me to set the scene: as I walked into yet another doctor’s office for yet another interminable wait to hear yet more depressing news about the new normal that follows life in Cancerland, I tripped over the uneven sidewalk. I fell on my newly-repaired knee and tore my favorite workout pants. My purse clattered to the pavement and my iPhone skittered out of my hand. My other hand, which broke my fall, became embedded with dirty gravel.
An elderly Asian man stopped to retrieve my phone and tried to help me up. I rudely shook him off, not caring that I appeared ungrateful. I muttered a terse thanks with eyes averted, head bowed. Collecting the shreds of my dignity, I hobbled into the building, trying to be grateful that my knee wasn’t bleeding (it was easy to ascertain this through my torn pants) but knowing my attempt at gratitude was futile. The elevator doors closed just as I reached them, solidifying my opinion that precious little was redeemable in this day, even though it was not yet 9 a.m., and hinting at the scent of extreme pissed-off-edness that was swirling around me, but not in a twirly gum drop kind of way.
An hour later–a full hour–I was still stuck waiting in the waiting room (has ever a more apt term existed??), captive in an uncomfortable chair and unable to escape the annoying prattle of the TV, tuned to an awful loop of medical advice, exercise tips, and pharmaceutical ads. I can now easily recite the side effects for AndroGel from memory. I’m most definitely not going to try the recipe for homemade spelt crackers the perky woman shared on the cooking segment. I exercised great restraint in not throwing something at the TV during the segment on BMI and weight-control. As the announcer droned on & on about the importance of physical exercise for overall health & well-being, I wanted to hurl expletives and yell that I’d love to be pursuing some physical exercise if I weren’t trapped in this blasted waiting room, WAITING for the doctor.
Just when I think it can’t get any worse, a woman shuffled in and sits right next to me, despite an entire row of empty seats. She alternated between conducting a loud conversation on her cell phone about her hurt feelings regarding being left out of a relative’s birthday party, and coughing violently and wetly in my direction. When I got up to move away from her and her disgusting germs, she muttered, “How rude.” Oh, that’s rich, and rife with pissed-off-edness.
An hour and a half later, I was still waiting. She was still yapping about the birthday party, and she was still coughing indiscriminately. While she yapped and coughed and the TV droned on & on, I thought about all the things I was not getting done while I sat and waited. Cue even more pissed-off-edness. This is par for the course, a normal day, another thrilling ride through Cancerland. I know this, I’ve been there before, and yet it still results in this particular brand of blood-boiling pissed-off-edness.
When the nurse finally summoned me, she apologized for keeping me waiting, and I struggled with the proper response: to say “no problem” implies that’s it’s ok, when it’s not, but to let her know that it’s not ok seems rude,especially since it’s not her fault.
As she took my blood pressure she asked for my copies of my test results/lab work. Like a whiny pupil caught without last night’s homework, I muttered that I didn’t know I was supposed to bring that. No one told me to bring that, and anyway, I wouldn’t know where to start, how to untangle that knot. Then I realized she meant my last round of blood work, which I had done a few days ago at my oncologist’s office. She offered to call his office to get the results while I wondered if I’ll have to sign a release for that. She assured me that they all “try to work together,” even though I’m guessing he’s never heard of this doc, and vice versa. What about the pages of privacy paperwork I’ve had to sign? Are those just lip service that crumbles in the interest of “working together?” These are the things I think about as I wait, and wait, and wait for the doctor.
The nurse left me to go make that phone call, and I waited some more.
I was sorely tempted to steal the In Style magazine with Gwyneth Paltrow on the cover, even though I don’t even want to read it. Just looking at her glowing good health on the cover made me mad, a feeling that only intensified as I thought about her macrobiotic vegan lifestyle. I’m jealous, I admit. Although I don’t aspire to a macrobiotic vegan lifestyle it angered me nonetheless that she practices it. I bet she never waits like this in a doctor’s office. My belief in the karma wheel stopped me from stealing the magazine out of spite–toward the long wait, toward Gwyneth’s good health, and toward her macrobiotic vegan lifestyle.
My long to-do list mocked me as I waste more time waiting, always waiting. I grew restless and bored, not to mention irritable, and found no solace in my kindle. I chided myself for not paying more attention in the 3 yoga classes I’ve attended in my lifetime, because some calming breaths and restorative chi would be great right about now. Perhaps such mindful, peaceful practices could help me ward off the pissed-off-edness monster huffing at my gate.
By the time the doctor walked through the door, 2 hours had passed and I’m exhausted from the waiting and the pissed-off-edness. I scolded myself for letting this get the better of me and reprimanded myself to be polite to the doctor, even though I want to show her my bitchy side and peel back the curtain to expose the extreme pissed-off-edness in all its raging glory.
Instead, I recited my sordid medical history since April 2010 when a lump in my right breast set off the chain of events that landed me here, in yet another doctor’s office, exhausted, bored, disgruntled, and contemplating kleptomania. I’m experienced enough and jaded enough (and pissed-off enough) to believe she will offer no solutions beyond perhaps adding another prescription drug to my burgeoning stable or perhaps patting my hand, frowning sympathetically and encouraging me to buck up while reminding me that I’ve been through an awful lot recently. I’d already decided that if she were to tell me to get used to it, that this is all part of post-cancer life, my response will be swift and premeditated: I will overturn the biohazard waste bin, kick the exam table, and maybe even hurl her stool through the window. These are my fantasies as I navigate my way through the levels of Cancerland.
Lucky for her, she did not pat my hand or rush to her prescription pad. She took copious notes on my symptoms, perhaps highlighting and flagging the extreme pissed-off-edness that lingered just under the surface of this normal conversation. She ordered yet more blood work and told me to schedule yet another appointment in a week to see what the blood work reveals. My guess is that my iron level will be low, my thyroid will be underperforming, and my level of extreme pissed-off-edness will be off the charts.
Good riddance!
Posted: October 31, 2012 Filed under: breast cancer, cancer fatigue | Tags: I hate October, making money off breast cancer, pinktober, pinkwashing, psychological effects of breast cancer, sexualization of breast cancer 9 Comments
(with thanks to David B for the always-outstanding artwork)
The space inside
Posted: October 24, 2012 Filed under: breast cancer, cancer fatigue | Tags: #MBCAware, breast cancer awareness month, breast cancer blogs, breast cancer research, metastatic breast cancer, Metavivor, psychological effects of breast cancer 18 CommentsI read a lot about breast cancer and how it affects those it strikes. Sometimes the reading is hard — like when an intrepid blogger dies from metastatic breast cancer — sometimes the reading is sad — like when a blogger pours out her heart on the topic of life and loss — but usually it’s uplifting, restorative, and comforting.
I’ve not done a good job in this space of writing about — and railing against — metastatic breast cancer, the kind that kills. MBC is every pink-ribbon girl’s biggest fear. Once that cancer leaves the breast and travels to points far afield, usually the liver, bones, and/or brain, the game changes completely. No matter what stage one begins the cancer “journey,” once the cancer spreads, it’s stage IV and incurable. Treatable, but not curable.
The stats on MBC are horrifying, both the number of women who are afflicted and the shockingly low percentage of funds allocated for research: 30 percent of women with early-stage breast cancer will develop MBC, and 90 percent of breast cancer deaths result from MBC yet only 2 percent of funds go toward research for it, according to metavivor.org. MBC is the pink elephant in the room. Or the elephant in the pink room, as the latest metavivor campaign calls it. 
I encourage you to click on this link and go to the metavivor website. There are easy ways to get involved and ensure that more funds go toward research for MBC. Each time someone likes metavivor on Facebook, a dollar goes into the research pot. Share the image above on Facebook, add another dollar. Sign up to receive emails from metavivor and add one more Benajamin. Follow metavivor on Twitter, add one more, and mention it on Twitter with the hashtag #MBCAware for one more dollar donated. The money comes from Eisai, a research-based pharmaceutical company. I don’t know how to pronounce its name, but I like what it is doing for oncology research.
I think about MBC a lot. I’ve written about it a lot. Recurrence is the scariest part of the breast cancer “journey,” IMHO, and that’s saying a lot because this “journey” is full of pitfalls, roadblocks, speed bumps, potholes, and unpleasant detours.
Yesterday I read a fantastic post about MBC by Yvonne at Consider the Lillies, and one part really stuck with me. Much of the post resonates, but this part especially, as it perfectly describes the recurrence side of the breast cancer “journey”:
“I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.”
I pondered this for a long while yesterday, and realized that I too have prepared a little space inside to be shocked once again. It’s one of the many hard truths about the aftermath of cancer. On one hand, surviving such an ordeal provides a zest for life, a desire to gobble up life in big, gulping bites, to live it to the fullest, in whatever form that takes. But on the other hand, it’s hard to live fearlessly and zestfully while waiting for the other shoe to drop. It’s not a question of thinking positively or hoping for the best. It goes beyond having done the homework and made the hard decisions and undergone treatments to slay the beast. One can do all of those things and still lose this game. One can do everything right, yet breast cancer recurs. That’s why we prepare that little space inside.
In her post, Yvonne calls for an online revolution about the realities of breast cancer, especially the metastatic kind. I’m in. Me and that little space inside are all in.
“awareness”
Posted: October 23, 2012 Filed under: breast cancer, cancer fatigue | Tags: body image after breast cancer, breast cancer awareness, breast reconstruction, DIEP reconstruction, JP drains, pinktober, presidential debates, psychological effects of breast cancer, young women and breast cancer 25 CommentsIn my ongoing rant against Pinktober, I’ve asked the question many times without getting an answer: what does all the breast cancer “awareness” make us more aware of, exactly?
I ask in all seriousness. I know what I think when I see a package of paper towels all decked out in a pink-ribboned wrapper, but I’m curious about the average, non-cancer-infested person. How does breast cancer “awareness” affect those who’ve not personally been waylaid by breast cancer? If I were just some normal person, going about my daily life and I saw an ad in the window of the TGF Hair Salon advertising their “Clip for the Cure” promotion, what would my reaction be? If I were not unwillingly strapped into the pink dress, would the “squeeze a boob, save a life” bumper stickers make me want to choke someone?
When people see breast cancer “awareness” products and services, do they think, “Oh my gosh, women (and men) are suffering from and dying from this terrible disease?” Do they think, “Damn, I’m sure glad I don’t have that!” or perhaps “Why does that damned breast cancer get all the attention?” or maybe even “mmmmm, breasts” in a caveman-like tone?
Apparently there was a time, not so very long ago, in which I was some normal person, going about my daily life. I don’t recall specifically reacting to any breast cancer “awareness” messages or intentionally buying pinked-up crap because I thought it would save some unfortunate woman’s life. I doubt I gave it much thought at all. Even very recently, as I went about my daily life and scheduled my annual well-woman exam, I didn’t think much about breast cancer “awareness.” When my OB-GYN wrote out the orders for my annual mammogram and I made the appointment and I showed up on that day and I changed into a gown and I stowed my belongings in a locker with a key and I waited in that ugly gown in a freezing cold room set up to look like a spa except for the TV blaring some dumb morning show that was most definitely not relaxing, I didn’t think much about breast cancer “awareness.” (BTW, if I ever do go to a spa that has a TV blaring some dumb morning show, I will turn on my heel and walk out.)
When the mammogram tech chatted with me about how I’m young for an annual mammogram and I explained that I’ve been getting one since I was 36 because my mom died of a reproductive cancer, I didn’t think much about breast cancer “awareness.” I expected the report to come back telling me I had dense breast tissue but no changes had been detected from the last year so I was free to go live my life unscathed for another year, until my next mammogram. When it didn’t exactly turn out like that, I still didn’t think much about breast cancer “awareness.” After my last mammogram, as I waited in the freezing cold room once again with the TV still blaring some dumb morning show while the mammogram tech showed my images to the radiologist on duty, I thought not of breast cancer “awareness” but of how much longer that appointment would take because I had a long list of things to do. When instead of being told I was free to change out of the ugly gown and back into my regular clothes, I was called back into the screening room so the radiologist could get a few more images, I still didn’t think much about breast cancer “awareness.” When the radiologist suggested we do an ultrasound in addition to the mammogram, and when her gel-covered want hovered over a certain part of my right breast while she made an upsetting and not-very-well-disguised frowny face, I still didn’t think much about breast cancer “awareness.” When the frowny-faced radiologist declined to answer any of my questions about what she thought she was seeing on the ultrasound screen and when the mammo tech gently patted my shoulder, I didn’t think much about breast cancer “awareness,” beyond being “aware” that this situation had all the makings of a disaster–a really big, really bad disaster.
When my OB-GYN got the radiologist’s report and called me to say I needed to make an appointment with a breast specialist, I didn’t think much about breast cancer “awareness.” When I called to make the appointment with the specialist and noticed that the name of her practice was Southwest Surgical Associates, I didn’t think much breast cancer “awareness” because I was busy wondering why on earth my OB-GYN had given me the number of a surgeon. When the receptionist at Southwest Surgical Associates said I needed to go ahead and schedule a biopsy, I didn’t think much about breast cancer “awareness” because my whirring brain had not quite caught up with my common sense, which would have told me to panic.
While the breast specialist injected me with lidocaine before she inserted a hollow-cored and very sharp needle into my right breast, then twisted that needle to extract a tissue sample deep within my body, I didn’t think much about breast cancer “awareness” because I was busy going to my happy place to avoid the searing pain that spread across my chest, despite the lidocaine. When the breast specialist, who at that point was just the breast specialist and not my breast specialist, double checked the coordinates on the ultrasound machine that guided her as she scooped out the tissue sample, I didn’t think much about breast cancer “awareness” because I was craning my neck trying to see what she was seeing on that screen. When she was all done and bent down to her little freezer to give me a few ice packs to stick into my bra, I didn’t think much about breast cancer “awareness” because I was wondering if the ice packs were too noticeable to stop me from running into the grocery store on my way home.
When the breast surgeon’s nurse Sharon called me a few days later to make sure I wasn’t driving before she said that the doctor needed me to “put her on my social calendar” I didn’t think much about breast cancer “awareness” because I was consumed with a feeling of dread more palpable than anything I’d ever experienced. When I (unfairly) pressed Sharon to tell me over the phone how bad it was and she back pedaled, I didn’t think much about breast cancer “awareness” because I was picking apart her every word and intonation for clues to how bad this really was.
When I drove to the breast surgeon’s office the next afternoon, I didn’t think much about breast cancer “awareness” because I was instead thinking about how I was going to get ahold of Trevor, who was out of town, to deliver the verdict before he boarded his plane. While I waited in the breast surgeon’s waiting room, I didn’t think much about breast cancer “awareness” because I was wondering whether I’d get out of there in time to go home and grab my kids then get across town–in rush hour–for my cousin’s 60th birthday celebration. When the breast specialist said that the biopsy did not look good, I wasn’t thinking about breast cancer “awareness” because I was wondering if I’d live to see my kids grow up. As the breast surgeon–who went from a breast surgeon to my breast surgeon–told me very matter-of-factly that it was indeed cancer, I didn’t think much about breast cancer “awareness” because I was focused on the pounding of my heart and the feeling of life as I knew it being replaced by a very undesirable alternative. As my breast surgeon laid out the options for ridding my body of its unwelcome visitor, I didn’t think much about breast cancer “awareness” because I was already dressing for battle. When she told me she didn’t want me to make a decision about surgery for at least 5 days, I didn’t think much about breast cancer “awareness” because my brain was full of slash-and-burn thoughts toward this cancer. When Trevor said he was ditching his business trip and catching the next plane out, I didn’t think much about breast cancer “awareness” because I was busy convincing him to stay, because if he changed his plans and aborted his trip, I could no longer operate under the (temporary) assumption that everything was ok.
While I worked the phones and manipulated my calendar to get through the myriad scans and tests required to see if this cancer had spread to other parts of my body, I didn’t think much about breast cancer “awareness” because I was still trying to make sense of the fact that at the age of 40, I was a cancer patient. As I researched oncologists and made appointments for them to review my case, I didn’t think much about breast cancer “awareness” because I was trying to wrap my head around the fact that I had a breast surgeon and an oncologist. Sitting in the oncologists’ waiting rooms, I didn’t think much about breast cancer “awareness” because I was focused on the fact that every single person in those rooms was a good 20 years older than me, and I was pleading with the powers that be to please, please, please let me live another 20 years.
As I scheduled my bilateral mastectomy, I didn’t think much about breast cancer “awareness” because I was busy counting exactly how many days there were between the surgery and the last day of school, knowing I would need as much child-free time as possible to heal. When I explained to my kids what was going on, I didn’t think much about breast cancer “awareness” because I was desperately searching for the right words to convince them that they weren’t going to watch me die from cancer they way they’d watched my mom die from it.
Healing from the surgery that left me battered, bruised, sore, scarred, and very, very flat (and not just in my chest), I didn’t think much about breast cancer “awareness” because I was busy emptying the 4 JP drains that sprung from my body and tugged and hurt like hell. As I searched in vain in my closet for something, anything, that might make me feel good about myself when I put it on, I didn’t think much about breast cancer “awareness” because I was preoccupied with wondering if I would ever get used to my new profile.
And when the post-mastectomy infection took over my body and once again turned my life upside down, I didn’t think much about breast cancer “awareness” because I was trying rather hard to stay alive. Upon being hospitalized for 9 days straight just 3 weeks after my mastectomy, I didn’t think much about breast cancer “awareness” because I was busy getting sicker and sicker while the doctors tried to keep me from going septic. When I was hospitalized a month later and then again 3 days after that hospital stay, I didn’t think much about breast cancer “awareness” because I was consumed with worry about whether the infection could be contained. As I endured 267 days of powerful antibiotics, I didn’t think much about breast cancer “awareness” because I was nauseated and utterly beaten down. When I decided to undergo DIEP reconstruction to get a blood supply to the oft-excavated and much-ruined chest wall, I didn’t think much about breast cancer “awareness” because I was planning how to endure a 5-to-7 night hospital stay, including a night in the ICU. When I left the hospital with 6 JP drains and a fragile peace between the transplanted blood vessels and their new host site, I didn’t think much about breast cancer “awareness” because I was on high alert for flap failure. As I recovered from that surgery, I didn’t think much about breast cancer “awareness” because I was, well, recovering from a pretty intense surgery. As I endured two more revision surgeries, I didn’t think much about breast cancer “awareness” because I was railing against the much-promoted fallacy that “at least you get new boobs.”
As I began life as a breast cancer survivor, I didn’t think much about breast cancer “awareness” because I was busy trying to live my life as a breast cancer survivor. With the passage of time and the re-introduction of non-cancer-related things to my life, I didn’t think much about breast cancer “awareness” because I was trying mighty hard to get back on track. As each cancerversary approached–date of diagnosis, date of mastectomy, date of infection, date of reconstruction–I didn’t think much about breast cancer “awareness” because I was thanking my lucky stars that all that was behind me. Then as I realized that “all that” may well be “behind” me but it’s always, always, always going to be a part of me, I didn’t think much about breast cancer “awareness” because I was busy feuding with the unruly monkey on my back. As thoughts of recurrence snake through my subconscious on a regular basis (say, every.single.day), I don’t think much about breast cancer “awareness” because I’m way too busy talking myself down off the ledge. When the inevitable thoughts of “why me?” enter my head, I don’t think much about breast cancer “awareness” because I’m committed to not RSVPing to that pity party. While I’m working my way back to my former state of fitness and wholeness at the gym and am surrounded by perfectly round, non-cancerfied breast implants, I don’t think much about breast cancer “awareness” because it takes all my energy to not feel really bad about my post-cancer body. As I gear up for the thrice-yearly oncology appointments and the biannual checkups with my breast surgeon, I don’t think much about breast cancer “awareness” because I’m busy, very busy, following my dear friend Amy’s advice of “don’t borrow trouble” (yet those pesky thoughts of “what if” are very determined to infiltrate my postive-thinking brain).
While I spend a whole lot of my time not thinking much about breast cancer “awareness,” the current culture of Pinktober makes it damn near impossible to not think about it, multiple times a day. Open the newspaper and see the Wacoal ad. Flip on the TV and see pink splattered all over NFL stadiums. Drive down the road and see inane bumper stickers and their infuriating references to the ta tas and the boobies and the girls. Go to the grocery store for necessities and run smack-dab into a sky-high pyramid of pink-labeled Campbells soup cans, which more than likely are chock full of BPA, which has been shown to cause cancer. While in the store, run across a woman wearing a ridiculous t-shirt and accost her for doing so. Tune in for the presidential candidates’ debate hoping to hear a reference to a plan to confront the breast cancer epidemic but come away with nothing but a watered-down homage by the First Lady and the first lady wannabe.
After all this, my question still stands: what does all the breast cancer “awareness” make us more aware of, exactly?
The Pink Underbelly 