In the last six months…
Posted: May 24, 2012 Filed under: breast cancer, cancer fatigue | Tags: blog challenge, cancer at age 40, finding happiness after cancer, post-cancer life, psychological effects of breast cancer 21 CommentsNever one to resist a challenge, I happily undertook Jelebelle’s blog prompt this week, which was inspired by Renn’s blog prompt last week. Jelebelle took Renn’s idea and ran with it, challenging us to “post a photo or self portrait or other form of visual art … of yourself that describes who you have been within the last six months.”
Hmmmm. Interesting.
I’m especially intrigued by the “who you have been within the last six months” part. Some days I feel a little Sybil-ish, with many different versions of me. There’s the warrior girl who pummeled breast cancer, the tough-lovin’-but soft-on-the-inside mama, the relentless chaser of the next level of strength in the gym, the hard-core-run-down-every-single-ball tennis chick, the at-home mom who respects the commitment to domesticity while being bored silly by it, the bookworm who can’t dive into the latest good read until the kitchen is spotless, the voracious detail-seeker who wants to know it all yet remembers precious little.
And that’s just what comes to mind at first blush.
I spent several days pondering this idea of who I have been in the last half-year. I’d think about it while at the gym, while watering my newly planted flowers, while making yet another sack lunch for my little darlings, while driving across our sleepy suburb mid-day with the top down and the wind whipping my hair into a frenzied mess. My inner warrior wanted the answer to Jelebelle’s question to be “I’m a badass slayer of cancer and bad grammar.” The softer side of me, which I usually try to tamp down at all costs, wanted the answer to be “I’m kind and patient and willing to see the good in everyone, no matter how moronic or mean-spirited they really are.” The chaser girl wanted the answer to be “I’m a beast in the gym who can’t get enough reps and I pity the fool who gets in my way.” The tennis chick wanted the answer to be “I’m a steady player who will wear you down in a war of attrition.” The at-home mom wanted the answer to be “I’ll have to answer that question after I fold 10 loads of laundry, put a delicious & nutritious meal on the table while a homemade cake fills the kitchen with the heavenly aroma of fresh-baked love, tend to the animals, dust the ceiling fan blades, and oversee the winning science fair project.” The bookworm wanted the answer to be, “Can’t talk, reading.” And the detail-seeker wanted the answer to be widely researched, fact-checked, and methodically presented.
Rather a tall order, right?
So in the end, after much soul-searching and reviewing of the events of the last six months, my answer to Jelebelle’s question of who I have been is this:
I’ve been a happy girl who is learning to love this post-cancer life. Becoming a happy girl post-cancer has been a long time coming. Like every diagnosis, mine was hard to hear and even harder to absorb. Being handed a deadly disease at age 40 is cruel, but being mangled and diminished by the disease is even worse. Once through the hard part (whichever part that is), the kernel of fear remains firmly implanted in one’s brain, and the realization that cancer may be gone but can never be forgotten is a heavy reality. It can be hard to be happy after all the damage that cancer inflicts. 
While mine may seem a simple answer to a complex question, the simplicity of being a happy girl is actually rather complicated. There’s the strange dichotomy between being pissed off at the universe for randomly choosing me to be the one in eight women diagnosed with breast cancer, and being immensely grateful that my cancer wasn’t as awful as it could have been. There’s a continental divide between having breast cancer ruin my life and having it push me to become stronger… better…more grateful. I’m alternately wrecked by what cancer has done to my body and my psyche and determined to ensure it will not defeat me. 
My cancer “journey” has not exactly been a sensible trip from point A to point B; I rather took the scenic route. Dear Dr Dempsey, breast surgeon extraordinaire, inducted me into her “One-Percent Club,” which describes my “journey” so well: of all the women diagnosed with breast cancer in her practice, there is one percent for whom anything that can go wrong will go wrong. The select few in this club will encounter worst-case scenarios that will blow the roof off of the established medical protocol. We are the women she and her colleagues discuss in tones of “WTH???” and the women whose stories she tells to her other patients in order to reassure them that their situation really isn’t so bad. It’s a privilege and an honor to be part of the One-Percenter (yuk, yuk!). We’re committed to serving as a cautionary tale to others whose only fault in life was to be born a woman with a pair of breasts. We are a group that is small but mighty, and we are endlessly stubborn in the face of this wretched disease and its many-tentacled complications. We’ve learned the hard way that our bout with cancer may be done but it’s never over. And this One-Percenter has spent the last six months becoming happy. 
Houston, we have a vaccine…
Posted: May 17, 2012 Filed under: breast cancer | Tags: AE37, breast cancer recurrence fears, breast cancer research, breast cancer vaccine, cancer research, Dr Elizabeth Mittendorf, HER2, HER2 negative, HER2 positive, MD Anderson, Stage IV breast cancer 26 CommentsWell, not officially, but the initial studies sure look promising.
Front-page news today in Houston declares that researchers at M.D. Anderson Cancer Center right here in my fine city have good things to say about results from an experimental vaccine. The researchers are hailing the potential vaccine as “a promising developement in an emerging field in cancer care.”
M.D. Anderson nurse Sara Stassen working on AE37
chron.com
Sounds mighty good to me.
Much has been written on the blogosphere about finding a cure — or, more accurately, the utter lack of progress in finding a cure — for this disease that fells one in eight women in the United States each year. The statistics are scary, and you can’t swing a cat without hitting someone who’s been touched by breast cancer. And by “touched by” I mean gobsmacked by. It’s a vicious, insidious, relentless disease, and in the decades of research, precious little progress has been made in finding a way to eradicate breast cancer.
All of that could change, however, with this potential vaccine.
It’s not too early to celebrate, is it?
Its focus is significantly reducing breast cancer recurrence. So it won’t eradicate the disease itself, but may (hopefully, please please please, fingers crossed, with sugar and a cherry on top) prevent women who have had BC from suffering a recurrence. Once BC comes back, no matter what stage it initially was or how effective the treatments were, you proceed straight to Stage IV and are considered incurable. That’s not to say the cancer can’t be managed, because it can, but it will never be cured. And therein lies the promise of this new potential vaccine.
I’ve gotten to know many Stage IV BC gals in the blogosphere, and their struggle is rough, to say the least. Ongoing treatment, escalating side-effects and financial burdens, and hopelessness are common in their fight. Not to mention mortality. Up front and in your face with Stage IV BC is mortality, in sharper focus and with a shorter shelf-life than ever imagined.
As one of the “lucky ones” in the cancer world considering my type of BC is lazy, slow-growing, and non-aggressive (touch wood here for good measure), I have a low recurrence rate. At least according to the charts and graphs and stats. That doesn’t mean I don’t think about it every single day, fear it and dread it. Even though I’m “lucky” and for all intents & purposes my cancer is gone, as I’ve learned from the brave cancerchicks who’ve gone boldly into the night before me, it’s never over, and the fear of recurrence is always there.
mdanderson.org
That’s where Dr Elizabeth Mittendorf comes in. She’s a professor of oncology at M.D. Anderson and this study’s chief investigator. She says that cancer researchers such as herself are “in the dawn of a new era” as they manipulate the immune system to recognize cancer cells and prevent or treat the disease.
The potential vaccine, called AE37, trains the body’s immune system to attack the infamous HER2 protein, which helps tumors grow and which is present in the vast majority of BC. One of the most important factors in a BC diagnosis is whether the cancer is HER2 positive or HER2 negative. Upon diagnosis, one waits to hear that HER2 status. HER2 positive breast cancers tend to be more aggressive and harder to treat. The hope with AE37 is that the proteins that make up HER2 will be taken down. Dr Mittendorf says, “If some rogue tumor cell is floating around, AE37 can recognize it and take care of it before it can settle into bone or other parts of the body. It’ll teach the T cells to recognize that HER2 protein. So the thought would be that if the T cells were educated in this way, if the tumor cell were to come back, the immune system could identify it, attack it and destroy it before the patient would have, as we see, a measurable recurrence.”
The beauty of AE37 is that it may be helpful in fighting other types of cancer as well. Because HER2 proteins occur in prostate, ovarian, and gastric cancers as well as in breast cancers, AE37 has a lot of potential across the board. For “lucky” breast cancer gals who are HER2 negative, like me, the potential vaccine may still be helpful. Dr Mittendorf is excited that the vaccine seems to reduce the risk of recurrent breast cancer in women who had both high and low levels of HER2. Mittendorf and her team studied 201 patients whose average age was 50 and who had previously had BC but who are currently cancer-free. Half of them received the vaccine, while the other half did not, and the initial results are encouraging. Mittendorf says, “We projected that breast cancer would come back for 10.3 percent of the women who got the vaccine compared with 18 percent of the women who had not been vaccinated. That translates to a 43 percent reduced risk of recurrent breast cancer.”
While AE37 won’t replace the traditional treatments — mastectomy, chemotherapy, and radiation — it could become part of standard care and would likely work in combination with the weapons currently used against the disease. The vaccine is given once a month for 6 months and then every 6 months for 3 years. While AE37 needs some fine-tuning, and a longer-term study would yield more information into its potential, this is very good, extremely hopeful news for those of us in the BC trenches. The fact that it may be able to cut recurrence rates nearly in half makes me giddy. The fact that this important research is taking place in my city is an added bonus. Kinda makes me want to run on down to Anderson and deliver some fresh-baked cookies to Mittendorf and her team. Just a little token of my appreciation for all their hard work. Should I make chocolate chip or snickerdoodles? In this case, I think I’ll make both. 
The circus may be gone, but the big top remains
Posted: May 11, 2012 Filed under: breast cancer, cancer fatigue, infection | Tags: DIEP breast reconstruction, life after breast reconstruction, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, psychological effects of breast cancer, the Big Dig 20 CommentsSaw Surgeon #2 last week about the next step in revising The Big Dig. Didn’t want to talk about it or blog about it at the time. I’m not sure why, but I suspect it has to do with Surgeon #2’s comment about me having “been to hell and back.”
Part of me thinks it should be very gratifying to hear Surgeon #2 say that. After all, I respect her immensely, and it’s quite validating to hear someone I think highly of say that I made it through a seriously trying time, and that I made it with flying colors. If there were a report card for cancer/infection/surgery progress, I think I’d have straight A’s.
No such report card exists, however, and a 4.0 in this particular course-load is meaningless. There is no honor roll in the ranks of survivors. Instead of a gold star, I have some big-time scars across my chest and belly. I’ve gained a few hard-won wrinkles etched in my furrowed brow, too, from the worry that accompanies a cancer diagnosis, a post-mastectomy infection, 267 days of oral antibiotics, and major surgery followed by not one, not two, but multiple revisions. There’s no end in sight to this circus. The fairgrounds are quiet, but the circus tent remains. The bearded lady has gone home, and the trapeze artists have ambled along, too. The wild animals are safely ensconced in their cages, and the carnival rides are dormant. The circus, however, lives on. It seems there is no end to the drama and three-ring craziness that is life after breast cancer. I hold out hope that at some point the circus will vanish in the night, and I will awake to find sawdust, peanut shells, and the faint smell of adrenaline and cotton candy. But alas, the big top remains.
google.com
I saw Surgeon #2 last week to get her opinion on the next step on this cancer “journey.” Like a traveling circus steaming toward the next town, the cancer “journey” chugs along. I sought Surgeon #2’s expert opinion on the next phase of this “journey.” After The Big Dig and subsequent revisions to perfect what is essentially an imperfect canvas, I needed to hear her say “do this” or “don’t do that.” I needed to know whether there’s any point to pursuing yet another tweak to my restored chest.
Surgeon #2 was her usual cheery, to-the-point self. She says I’m “almost there” in the relentless pursuit of normalcy — at least on the physical side — after breast cancer and reconstruction. That’s the tactful way of saying “We can do a little more, but it’s never going to be perfect so we’re getting close to the time in which you start to accept it.”
I don’t want to accept it.
I’m still hanging onto the myth — albeit cruel and deceptive — that one can have nice boobs again after cancer. Public Service Announcement #852 from this little blog: If you hear someone say, “Bummer about the breast cancer, but at least you get new boobs,” be aware: the new boobs may not be something you actually want.
I’m still not ready to accept that ugly truth.
Surgeon #2 concluded my consultation with a little look-see at an 8 1/2 x 11 inch photo of myself pre-reconstruction. I don’t remember posing for that picture, as there have been several photo shoots associated with this cancer “journey,” but there it was, on the inside cover of my file. Surgeon #2 flashed that full-sized photo of me, with one tidy mastectomy scar on the left and one not-so-tidy scar on the right. The right side, a mess of multiple scars and tissue excisions necessitated by the nosocomial infection. I hadn’t seen or thought about that scene in many moons. I recognized the train wreck on what was formerly known as my right breast. I recognized the God-awful blue paper panties required for plastic surgery photos. I recognized my former belly button, so normal and non-Frankenstein-looking. I recognized the flabby belly that I was required to acquire so that the DIEP surgery — my only reconstruction option — could occur. That belly was flabby, but it was unblemished and absent was the 17-inch incision from hip to hip that has mellowed but will forever be a stark reminder of what the king’s horses and the king’s men did in an effort to put Humpty Dumpty back together again.
While I hadn’t seen that photo in nearly two years, I recognized every aspect of it. However, when Surgeon #2 said, “You’ve been to hell and back,” I couldn’t conjure up the specifics I expected to feel about that dark period in my cancer history. In fact, hearing her say “You’ve been to hell and back” was startling. I didn’t expect it. I didn’t know how to react to it. And days later, I still don’t know how to react to it.
I suppose I should have felt some pride and/or satisfaction at having endured that trip down the “If anything can go wrong, it will” scenario. Perhaps I should have felt a sense of accomplishment at having survived that arduous trip down the rabbit hole. I guess I should have felt happiness at having come out on the other side of such a hellish situation. But I didn’t.
Instead, I felt as if I were watching myself in a movie. I remember being there, of course, and I remember that all that happened to me. But I can’t conjure up the specific feel of the experience. I can’t visualize the ins and outs of that particular “journey.” I see myself, my physical body, in that full-size, color photo (which is not at all flattering, by the way), but it doesn’t seem like me. I see that former body through a myopic lens. The rational side of my brain knows it did indeed happen to me, but the protective side of my brain has shielded me from calling it up, in all its ugliness. Like the flash of lightning in the night sky of a summer storm, or the sharp but fleeting heat of a jalapeno pepper on the tongue, I know it’s there but once it’s gone it’s gone. For that I should be grateful.
But I’m not grateful.
I’m sad.
Really sad.
And really mad.
Maybe it’s too soon to feel triumph over the wily infection that wreaked untold havoc on my weary body. Perhaps the time is not right to celebrate how far I’ve come. Maybe I’m simply not one to say, “That was rough, but I got through it.” Apparently it’s a long way from beginning to end, if there ever is an end, and I’m not there yet. While it’s been almost exactly two years since I bid adieu to my cancer-riddled breasts, that’s not enough time to process the enormity of all that’s transpired over the last 728 days. If it were a linear path from diagnosis to mastectomy to psychological recovery, I might be in a position to expect some change, some healing, some progress to have occurred. But I was busy processing that nasty infection instead of dealing with the weight of cancer at age 40, so the change, the healing, the progress remains at a standstill.
The big top remains.
google.com
Take your “policy” and shove it; Fish will walk!
Posted: April 17, 2012 Filed under: breast cancer, kids | Tags: Austin Fisher, cancer battle, change.org, children whose parents have cancer, family, family first, kids and breast cancer, Let FISH Walk, psychological effects of breast cancer 15 CommentsThe story of Austin Fisher is making the rounds, and I’m determined to do my part to keep it going. It’s especially appropriate today of all days, as it’s my sweet mama’s birthday. There’s nothing I’d rather be doing than wrapping a gift and making a coconut cream pie for her. Happy Birthday, Mom. I sure do miss you.
This boy, Austin Fisher, deserves a medal, a college scholarship, a witty & beautiful prom date, and a hot fudge sundae. Maybe more.
He certainly deserves to walk across the stage in Carrollton, Ohio, next month with the rest of his senior class and receive his hard-earned diploma.
facebook.com
Austin’s mama, Teri, has metastatic breast cancer, which she’s been fighting for 7 years. That’s almost half of Austin’s life. Her one goal in her cancer battle was to survive long enough to see her son graduate high school. That goal was nearly compromised by a stupid policy and a dogmatic bureaucracy. Carrollton High School principals told the varsity baseball player that he could neither walk at commencement nor attend the senior class trip nor go to the prom.
What’s up? Bad grades? Unruly behavior? Smoking in the boys’ room?
Nope. Austin wasn’t going to walk or go on the trip or go to prom because he had 16 unexcused absences from school. Before this school year, Austin had perfect attendance.
Why was he absent? Not because he was cutting class or ditching school. He was caring for his mom while she was being pummeled by breast cancer. Teri Fisher says that her son is “her hero, her rock” and that with no adult male in the household, the role of caregiver was valiantly taken on by Austin. He willingly sacrificed to care for her, saying that school took a backseat to doing the day-in-day-out, hard work of primary caregiver. “You never know how much time you have left and that was one of her big [goals]–to see me walk and get my diploma and go off to college,” Austin says. “I wouldn’t change it, everything I did. Family first.”
Family first.
I’m blown away by the depth of character of this young man. What a stellar example of priorities, commitment, and loyalty. We could all take note.
Austin’s aunt wrote a letter to the local newspaper once the story broke, to shed a little more personal light on the Fishers’s situation:
“A single mom juggling medical bills with the usual expenses of living, fighting a foreclosure, working her job, traveling to Canton for chemotherapy — no easy task. Throughout all of this, Austin continued to attend school as he could while caring for her, working two jobs, and participating in varsity sports.”
When Austin learned in January that he would not be able to participate in the much-anticipated rites of seniors such as commencement and prom, he and his mom went straight to see Principal Dave Davis but was told that “rules are rules” and “it’s policy” to deny these things based on the number of unexcused absences.
Thanks to the power of the people and the sweeping reform accomplished by social media, Superintendent Palmer Fogler reversed the decision yesterday, and Austin will get to walk, and Teri will achieve her goal of seeing her boy graduate.
Hallelujah! Rock on, people!
The Facebook group “Let Fish Walk” played a part in the reversal, I would think. The group grew quickly, from a respectable 10,000 yesterday to some 32,000 members and counting today. A petition through change.org also helped, with some 100,000 signatures. FYI, the population of Carrollton is 3,211.
cantonrep.org
I’m thrilled for Teri and Austin. Kudos to the Carrollton school board for making the right decision, and to the world at large for being decent and giving a hoot about one family’s plight. Cancer sucks. It devastates families and wreaks untold havoc. But once in a while, something good and heartwarming comes from the vicious disease that steals so much from so many. Today that something is Austin Fisher and his mama Teri. As I remember my own sweet mama today, I’m crushed by her absence in my life and the fact that yet another birthday of hers comes and goes without her. She would have been 74 years old today. I wonder how much she would have changed had she been here the last 7 years: would she have finally stopped dying her hair blonde and let it go white, as she spoke of wanting to do? Would she be a little hunched-over and frail, or still the busybody, energetic dynamo we all knew and loved? One thing is for sure: she would be spoiling my children and fussing at me to leave them be, let them play, give them more treats. Another thing is for sure: the hole in my heart that will forever remain because of cancer. I do hope that Austin Fisher never has such a hole in his heart.
Separate the baby from your breast, ma’am
Posted: April 9, 2012 Filed under: breast cancer, kids | Tags: 9/11, airport security, breast milk, breast pump, breastfeeding, nursing babies, post 9/11 security, terrorist attacks, TSA 16 CommentsHere’s a funny story to jumpstart the week after a long weekend. Trevor saw this storyand sent it to me with a chuckle, remembering an incident that could have easily landed me in jail. Which incident, my smart-ass friends might ask? The one in which I was traveling with a nursing baby who wanted to eat just as it was time to go through security.
my little chica loved 2 things at this age: eating & new shoes
The baby in question was Macy, and we were traveling back & forth between Houston and Durham, NC, to house-hunt. Macy was born 4 months after the terrorist attackson September 11th, so airport security was an evolving mess. Can’t say that it’s improved all that much in the decade since.
this pretty kitty loved her chow
We had collapsed her stroller and sent it and all the baby paraphernalia through the x-ray scanner, and I was almost ready to walk through when she decided it was mealtime. Rather than subject everyone in the airport to a pissed-off, crying baby, I started to nurse her just before walking through the metal detector. The TSA agent barked at me to “separate the baby from my breast.” For real.
I told him in my firm-but-somewhat-respectful voice that she was currently eating. He said too bad, so sad, get that baby off the teat. It’s hard to say who was more unhappy at that moment: Macy for having her meal so rudely interrupted, or me at the TSA agent’s stupidity. I pried my baby girl from her gravy train and hoped that jackass agent would get a shot of breast milk right in the eye.
Life is hard for nursing moms. When Payton was an infant he was having a meal at the food court at First Colony Mall and an older woman approached me to tell me that was disgusting. I assumed she was talking about the Chicken McNuggets one of my companions was eating, in which case I would have wholeheartedly agreed. However, she was referring to me nursing my baby. She thought I should “take that into the restroom.” I looked at her in disbelief and asked her how she’d like to eat her lunch in the mall restroom. Not so much? Well, neither would he. Sheesh.
My nursing days are long gone, which is a good thing considering the current state of my breasts, but I’ll always remember the outrage I felt at the airport and at the mall. Just like an elephant, I never forget.
Couture for the Cause, redux
Posted: April 3, 2012 Filed under: breast cancer | Tags: American Cancer society, Anything Bling, cancer battle, cancer survivors modeling, Couture for the Cause, fundraiser, life after cancer, spring fashions 15 Comments
I was trying to download some photos from the professional photographer’s website for the Couture for the Cause this past Saturday night. They have some beautiful pics of the event, and a handy “Post to WordPress” feature, but when I tried that feature, it posted the pic without allowing me to add any text.
So I will use the non-professional photos, taken by one John Burrmann, which IMHO are plenty good. See for yourself. He focused more on the people than on the venue, so I will paint a picture in your mind of the stately grounds and lovely estate that housed our fashion show and fundraiser for the American Cancer Society. The house is nestled onto a huge lot that slopes gracefully to a private lake. The runway was constructed on the lawn, with chairs around the perimeter and small round tables sprinkled around to allow for casual viewing of the big show. 
The show is a big deal. Last year the event raised some $94,000 for the ACS, and I hope this year exceeds that amount. Having cancer survivors model the fashions is a brilliant idea, both because it encourages the audience to dig deep into their pockets, and because it gives us survivors a chance to celebrate life. What’s more important than that after we’ve faced a terrible disease, difficult surgeries, ongoing treatments, and uncertain futures? Nothing. Not one thing.
There were several breast cancer survivors modeling again this year, and we talked amongst ourselves about how many years out we are. There was also a 20-year-old leukemia survivor who’s been in remission for 15 years. One model had brain cancer and is facing another reconstructive surgery next week. While all of the survivors who participated have a different story, we also have a commonality, and it was nice to unite in that commonality for one night and celebrate life.
The amount of volunteer hours and professional time that go into the gig are staggering, and the result is a first-rate production. I’ve been looking forward to this for weeks, and being an experienced survivor model I was ready to do my thing. I had the ultimate fun of having two of my dearest friends model with me. Amy and Christy both rallied at my side when the Big C wrecked up my life, and it was such a fun thing to have them by my side for the big event. Unfortunately, the excitement was clouded by sadness from the unexpected death of our sweet dog Harry. Because he died late Thursday night, I made the executive decision to not tell my kids until after school on Friday. It didn’t seem right to tell them Friday morning and send them off to school; I wanted them to have the luxury of grieving in private. I fretted all day Friday about how to tell them. I should have consulted my intrepid breast surgeon, Dr Dempsey, who has honed the skill of delivering bad news to an art form. I’m sure she would have had just the right words. As it turned out, I delivered the news then had to rush off to rehearsal for the show. My head wasn’t quite in the game for rehearsal, and I struggled with the finer points of the runway choreography. The “one and a half” and the “down and back” refer to the way we walk on the runway all decked out in our finery, and while it’s not hard, it took some brainpower to master.
Lenny and Tamra are the dynamic duo who take these fashion shows from cute clothes and accessories to a full-blown production. They pick the clothes for each of the 22 models, add accessories from jewelry to hats to feathered headpieces, design the sets and lighting and choose the music, then orchestrate all these pieces to cohere into the sum total of an amazing show.
We were instructed to show up at 6:00 sharp for our 8:45 pm showtime. Hair & makeup were time-consuming but fun. The show’s theme of the Roaring Twenties was reflected in the intricate hairstyles that featured soft waves and lots of pin curls. Makeup was subdued but included false eyelashes and red-red-red lipstick for each female model. As we went from chair to chair in the war room of hair & makeup, we felt like celebs preparing for a red carpet debut.
check out those eyelashes!
After the work was complete in the war room, we hustled to the dressing tent behind the runway. Talk about a chaotic scene. Each model is assigned an assistant called a dresser. The dresser’s job is to help us into our clothes, put on our jewelry and shoes, and make sure we are ready to leave the tent and present ourselves backstage for final inspection by Tamra. No detail escapes her sharp eye, and she is ready with a safety pin to bind a gap, a hairpin to tame an errant mane, and a keen sense of how a headpiece should lay or a scarf should be tied.
There’s not a lot of time to get dressed, and even with our dressers helping, it’s a crazy, crazy scene. In fact, as soon as we left the runway in one outfit, we were instructed to start taking off as much as we could while hustling back to the tent. Getting dressed was even crazier this year because two of my outfits were very light-colored — one white with a black skirt, one ecru with an orange ruffle — so trying to pull them on quickly while not smearing makeup on them was no small feat. My intricate flapper-style hairdo complicated the speed-dressing process, too, as there were 100 bobby pins holding my hair up that needed to be delicately avoided. There’s nothing delicate about a tent full of women and their dressers in the middle of a fashion show. The production assistants were yelling out our names to let us know we were due backstage, and a few male assistants were in the tents, too, making sure we staying on task and on time. There’s no place for modesty in the tent.
The first scene featured black & white fashions and was kicked off by the professional models. These girls know what they’re doing, and they know how to get the show started. This lucky guy got to strut his stuff with one of the pros, Mariah. She and I chatted in the war room and she’s as nice as she is beautiful.
The professional models may have had all the right moves and the picture-perfect looks, but we had the best cheering section. A sampling of our supporters:
The applause was thunderous, and there was more than one instance of hootin’ and hollerin’ when we took the stage. I only wish I’d channeled some of Mariah’s grace and stage presence when I hit the runway in my black & white outfit.
This isn’t something I ever would have picked for myself, but that’s part of the fun of the fashion show. The skirt was rather short, and the fishnet hose were a bit out there, but it was fun, fun, fun!
Christy’s black & white outfit was a romper, which Dr Dempsey referred to as a onesie. Some fishnets and a beret completed the look.
Amy’s outfit for this scene was so cute, and she rocked it.
The true-blue friend who brushed my teeth in the hospital and mediated more than one altercation with a white-coated professional was utterly transformed into a hot-hot-hot model!
Not only did I have some of my best girls modeling with me, I also had Dr Dempsey struttin her stuff. She did an outstanding job puttin’ on the ritz, and while I enjoyed every minute of modeling with her, I hope she doesn’t quit her day job! (She’s the blond, on the right.)
She told me she had an alter ego on the runway, and now I know that to be true. Being together for this event also gave her the chance to fuss at me for not coming to see her for my post-mastectomy follow-up. I’m a bit behind on that, but I’m happy to report that I went yesterday.
Scene 2 was tangerine-themed, and my one-shouldered dress was super fun (but a little too blousy). The ecru color with the tangerine ruffle was cute, but I’m not posting a pic because it’s not very flattering. It’s my blog, and I can withhold photos if I want to.
Instead of showing a not-so-great pic of me, I’ll show you the pros doing their thing:
The one bad thing about being involved in the fashion show is not getting to see everyone on stage. While these girls were modeling these cute dresses, I was frantically getting out of outfit #1 and into outfit #2.
I was able to watch this husband-wife combo strutting their stuff, and I would have loved to have seen more. They were having a ball and the crowd loved them. 
This lovely lady is a longtime survivor who gives newbies like me a lot of hope. She also rocked the runway in her high heels.
Our third scene was print dresses, and they were so so so cute. Amy looked like a million bucks in hers.
Christy and I got to walk together for this scene, and we both love our dresses. We had to try hard not to giggle and talk while cruising the catwalk.
The pros glammed it up in long dresses in gorgeous colors.
The show was almost over at this point, and we didn’t have to change into another outfit but just get ready for the big finale.
All the models circled the runway in a triumphant finish. Our faces hurt from smiling, our feet ached from struttin in heels, but our hearts were full of pride and happiness.
Model prep
Posted: March 30, 2012 Filed under: breast cancer, pets | Tags: American Cancer society, Couture for the Cause, new boobs, preparing for a fashion show, psychological effects of cancer, survivor, Victoria's Secret models, walking the catwalk 4 CommentsThe American Cancer Society’s Couture for the Cause is fast approaching. As in tomorrow. I’m experiencing equal parts excitement and terror about modeling in the fashion show. Since this is my second time to model in the Couture, the excitement should be outweighing the terror, but alas it is not. Ask me tomorrow which feeling prevails. Hopefully it will be excitement. Sadly, all the fun and triumph surrounding this event are overshadowed by the unexpected death of our sweet dog Harry. It has been a long, hard day at our house, following a sleepless, sad night. I can only hope tomorrow is better. I’ll have a couple of my besties modeling with me this year, so it will be a great comfort to have them backstage and on the catwalk with me.
Getting ready for the show is pretty easy, assuming there are no big bumps in the road like the one we’re experiencing as we grieve for our dog. There’s the model survey to fill out (height, weight, hair & eye color, favorite designers, personal style, etc) and a full-length photo to submit. Then show up for a fitting of the outfits I’ll be wearing; show up for rehearsal with finger- and toenails painted red; and show up a few hours early for the event to have my face painted and my hair teased and tousled by a team of professionals. Oh, and procure the items on my “bring list,” which this year include a pair of brown platform sandals, a pair of black peep-toe platform heels as high as I can manage, and a strapless bra. Last year, I modeled between mastectomy and reconstruction, so there was no need whatsoever to bring a bra, strapless or otherwise.
In fact, last year I modeled having been sprung from the hospital just a few weeks before the big event. That nasty post-mastectomy infection damn near kept me from being able to participate in the most terrifying and most amazing experience I’ve ever had. This year, I’ll skip the hospital part and head straight for the show.
Last year, I had no idea what I was getting myself into but was coaxed and cajoled by some people I really love (that means you, Yvonne) and some people I’d never met but who assured me I’d be perfect, just perfect. All of the other models were cancer survivors, save a dozen or so real-life models to really showcase the outfits and lend an air of professional gravitas to the event. There were several other breast cancer survivors among the non-professional models, and they happened to be a lot farther along in the cancer “journey” than this fledgling model was. Every single one of them was done with reconstruction and didn’t bat an eye before showing me their results. Only at an ACS event would it seem perfectly normal to be closely examining a complete stranger’s breasts, but that’s how cancerchicks roll. 
Needless to say, last year I was a teensy bit unsure about taking the stage and strutting my stuff on the catwalk among hordes of people who’d paid a lot of money to get into this gig. My body was a train wreck, my mind was somewhere between blown and trying to follow along, and my emotions were all over the place. I’d managed pretty well at that point to wrap my head around the cancer diagnosis, but dealing with the infection that threatened to be an unsolved medical mystery — not so much. 
Hooray for being in a muuuuuuuuch better place this time around.
And hooray for actually liking the outfits I’m going to model on Saturday, and for hopefully not having a mink headwrap this time around.
While there is a lot of prep work that goes into pulling off a successful Couture show, thankfully most of it is done by others. I’m pretty sure there’s not another cause I’d be willing to model for, even though it gives me an excuse to buy new shoes. All this fashion show prep reminded me of a story Trevor shared with me a while back, about what the Victoria’s Secret models go through before their big fashion shows. Seems the Telegraph followed VS model Adriana Lima leading up to her fashion show. Lima is a bit more serious about prepping for her show than I am for mine:
She sees a nutritionist, who has measured her body’s muscle mass, fat ratio and levels of water retention. He prescribes protein shakes, vitamins and supplements to keep Lima’s energy levels up during this training period. Lima drinks a gallon of water a day. For nine days before the show, she will drink only protein shakes – ‘no solids.’ The concoctions include powdered egg. Two days before the show, she will abstain from the daily gallon of water, and ‘just drink normally.’ Then, 12 hours before the show, she will stop drinking entirely. “No liquids at all so you dry out, sometimes you can lose up to eight pounds just from that,” Lima says.
Say what??
I can assure you that I will most certainly not stop drinking entirely before my show. If anything, I’ll probably be drinking even more than usual. I will most definitely raise a glass and send up a toast to my sweet dog who is no longer waiting to greet me after my big event.
The Phantom Tollbooth
Posted: March 27, 2012 Filed under: breast cancer, cancer fatigue, literature | Tags: Chuck Jones, longterm antibiotics, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, the Big Dig 6 CommentsRemember that book from back in the day? It was also made into an animated movie by Chuck Jones, the genius of cartooning. It was written before I was born, by Norton Juster and was illustrated by Jules Feiffer. Not sure what either of them has gone on to do, but perhaps the Tollbooth was enough.
thenewyorker.com
It’s the story of a boy named Milo who unexpectedly receives a magic tollbooth, which he explores in a toy car. Along the way he becomes lost in the Doldrums, where thinking and laughing are strictly prohibited, and is rescued by Tock, a lovely giant watchdog with an alarm clock attached to his belly. The parallels between this story and the cancer “journey” are many.
I was thinking of The Phantom Tollbooth yesterday as I noticed a phantom pain deep in the area formerly known as my right breast, where the evil post-mastectomy infection set up camp and decided to stay awhile. The pain itself wasn’t strong enough to take my breath away, but the implications were, and my mind immediately began racing: what if the infection is back? what if it never fully went away? There were signs of that damned infection, after all, during The Big Dig, which was 9 months after the infection first made itself known.
It’s been a year since The Big Dig, which was my best option for defense against the infection after 267 days of oral antibiotics didn’t fully slay that beast. Nearly a year later, a random pain in the area of my body that was my Ground Zero still has the power to bring me to my knees. Not because it hurts so badly, but because of what it represents.
The idea of the infection once again rearing its ugly head scares me. A lot. I don’t think about it often because I’m busy living my life, but once in a while, as in the case with the phantom pain, the thought does cross my mind. If it did come back, or if it reasserted itself after lying dormant, I would freak out. And yes, that is the correct medical term for becoming reacquainted with the mycobacterium that made a cancer diagnosis at age 40 seem like a walk in the park. The cancer part was easy (relatively speaking) but the myco damn near destroyed me.
Looking back on that dark period of my life is like watching a movie. I see this girl who’s going about her charmed life. Sure there are things that could be better but for the most part it was indeed a charmed life. She lives this charmed life rather out loud, and does “all the right things” to ensure that the charmed life has plenty of staying power. Baseline mammograms at age 36 because of her sweet mama’s premature death; a meat-free, plant-based diet free from preservatives and other nasty; daily exercise; a premium placed on a good night’s sleep; plentiful fresh air and clean water; an all-out avoidance of hormone-filled dairy products for her and meat products for her kids; a plan to deal with the stresses that sometimes darkened her door.
This girl was the last person you might expect to be felled by cancer. And yet, she was.
It’s hard for me to recall those dark days. Of course I know it happened and I was there, but my brain seems to protect me from all the gritty details. After taking in the diagnosis, deciding on the bilateral mastectomy, enduring the surgery and thinking I was on the road to recovery, the infection hit and knocked the wind right out of me.
There’s a vivid PTSD associated with the whole infection thing. I’d bet there’s a whole separate PTSD associated with the cancer thing, too, and it comes out in strange ways, such as a phantom pain sending me straight from normalcy to crazy town without stopping to collect my $200. Could be that the phantom pain in my chest was from 4 sets of tennis on Sunday after a tough upper-body workout on Friday. Or it could be from the wear & tear of multiple tissue excisions and general gutting of the infected skin during the infection’s salad days. When I was a kid, I had pneumonia, and some part of the illness settled in my left lung. For years after that illness, I’d often feel a pain/fatigue in that same spot. Perhaps the phantom pain in my chest is similar.
Very likely it’s nothing to worry about, but once you’ve danced with the devil that is cancer, any twinge or spot or pain sets you on high alert. Some of us head straight for the catastrophic death spiral my sweet friend Lauren writes about. As she so knowingly puts it “The catastrophic death spiral makes us think a lump in our thigh is thigh cancer, a headache is brain cancer, and shortness of breath after running is surely announcing lung cancer. The catastrophic death spiral is the vortex that is cancer.” My recent phantom pain sent me spiraling before I had a chance to reel myself back in to the land of rational thought. It’s worrisome enough to have already dealt with the havoc that cancer brings, but to also feel the aftershocks of that disaster just stinks.
I expect that the constant looking over my shoulder is common in cancerland. But I don’t like it. I’m rather known for my heightened sense of justice and the idea that if you do the hard work/right thing, you’ll get the payout. But bad things happen to good people every day, and life isn’t fair. People who take good care of themselves get cancer, and people who treat their bodies to a buffet of Animal House-style debauchery outlive them. I know this, yet I’m still brought up short by the phantom pain’s effect on me and how quickly and effortlessly I returned to the catastrophic death spiral.
I was probably foolish to think that there would be an end to the cancer “journey” and that the incidences that trigger PTSD would gradually disappear. I should have known that even after logging many miles and paying the requisite tolls in this “journey,” I would forever be circling, just shy of my destination, and always consulting the map. Once Milo returns home from his trip on the tollbooth, he sees a note, which reads, “FOR MILO, WHO NOW KNOWS THE WAY.” I’m looking for my note and wishing I knew the way.
Phantom Tollbooth's Map of Lands Beyond
The Pink Underbelly 