Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. This is my favorite girl today.
I know, right??? How does that happen???
Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.
She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.
Feelings. The dreaded feels.
I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)
Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.
When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.
That will happen, right?
Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.
I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.
I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I should know damn good and well that there is no end. So why do I keep looking for it?
I’ve been on hiatus from blogging but rest assured, all is well. No real reason for the hiatus other than the fullness of life. Although I’ve not been wrapped up in the hurried pace of the school year, so far summertime finds me still going & blowing as usual. Less than three weeks until our annual vacation to Salisbury Beach, though, and I will slow down then. As the sage Zac Brown says, I’ll have my toes in the water, ass in the sand, not a worry in the world, a cold beer in my hand. Can’t wait.
Yesterday was my quarterly check-up with my cutie pie oncologist. My intrepid appointment companion Amy is currently living the good life seaside on the East Coast, so I had to go it alone. She strongly suggested I reschedule, lest she miss a visit with Dr Cutie, but alas, I carried on without her. She’ll have to wait until November to lay eyes on him, as I’ve graduated to three visits a year with him. That’s my reward for being two years out from the dreaded disease: fewer oncology appointments.
Despite one fewer chance a year to gaze upon Dr Cutie as he imparts his wisdom, this is a good thing because I found myself feeling guilty sitting in the waiting room. Of the four other patients waiting for the good doctor, I was the only one with hair. The others were not only bald but quite sickly looking (and a good 20 years older than me, as well). As I perched on a chair in my workout clothes, planning to hit it hard at the gym as soon as I got the requisite visit out of the way, I was filled with a sense of guilt over my good health.
I could feel the eyes of the other patients on me, and I imagined them wondering, as I would in their shoes, what a strapping gal with a full head of hair, color in her cheeks, and a spring in her step was doing at an oncologist’s office. Had the shoe been on the other foot, I would have assumed this picture of health was meeting someone there, or perhaps had found herself in the wrong office and had not yet realized the mistake.
My guilt was somewhat assuaged by the stark recollection that there was a time, not so long ago, when I was the sickly looking one, dragging myself from one appointment to the next, consumed with healing after a double mastectomy and overwhelmed by a post-surgical infection. I remember well the days of envying the “normal” people who walked with ease and were unburdened by the pressing concerns of cancer, treatment, and their ugly fallouts. Ditto for all the days (close to 30 days all told that one summer) I spent in the hospital. Pushing my IV pole on endless loops around the hospital halls, I would gaze longingly at the healthy people out and about and wish I were among them.
Although I’m two years out from the dreaded disease (or, two years and 2 months, as Dr Cutie so astutely recited from memory), the recovery process from the infection was quite lengthy, and it’s really not been all that long since I was freed from the clutches of that wretched bug. Many times as I moved from the infectious disease team’s office in the Texas Medical Center to Dr Cutie’s office around the corner from home and to the plastic surgeon’s office halfway in between the two, I stared hard at the healthier specimens I saw along the way. I remember feelings that ranged from outright envy to smoldering anger at these people who went about their daily business the way I used to. I envisioned these people getting their kids off to school, hitting the gym, running errands, lunching with friends, and doing household chores with ease, the way I used to. I imagined the fabric of their lives being uninterrupted by cancer, the rudest of guests, and assumed that they sailed through their days focused on minor inconveniences rather than big-time medical crises. First-world problems like a cancelled hair appointment or a rained-out tennis match were screechingly replaced by real-world problems like a hole in one’s chest wall that just won’t heal and an insidious bacteria that evades treatment quite stealthily.
Was it survivor’s guilt that hit me yesterday in the doctor’s office? Perhaps. I’ve never been one to wonder “why me?” — neither in terms of the roulette wheel of whose genes will come up hinky and necessitate a diagnosis, nor in terms of why am I now healthy while so many others are sick. Seems like a colossal waste of time and energy to me. I don’t spend much time thinking back about the sheer hell I endured with that nasty infection; partly because I don’t want to go there, and partly because my brain works hard to protect me from going there. There are plenty of gory details I have to work hard to conjure up, and while my intellectual brain knows that of course I did go through all that, my sympathetic brain says let’s not rehash that ugly past and prevents me from really remembering how awful it was. Better to smile encouragingly at the other patients in the waiting room and spend a few minutes of quiet reflection on the road I’ve traveled and how far I’ve come.
The 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.
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.”
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.
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.
Cancer steals so much. All the time. Every day. This I know for sure.
A couple of days ago I smacked my head upon this truth and watched helplessly as my dear friend experienced this for himself. His dad died from cancer a decade ago. Ten years, yet the grief was as raw as can be, the loss as crushing as it was a decade ago.
His dad was a handy guy who could fix anything. He made a good living — and supported four kids — with his hands. My friend learned from his dad and is handy too. Although his livelihood isn’t manual, he can fix anything, like his dad. He just doesn’t always believe it until it’s done.
My friend was fixing the spring on our gate (one of the many things he’s helped with around our house). The spring on the outside of the gate had lost some of its tension, and the screws holding it in place had wriggled loose after seven years of use. How many hundreds of times has that gate banged shut as my busy little family comes and goes? When we were building our pool, the gate and the fence came down, to be replaced by temporary, orange plastic fencing (seen behind the slabs of flagstone) that couldn’t contain my dogs. My then 7-year-old chased the escaped dogs across a very busy street, unaccompanied, but that’s a story for another day.
In the process of repairing the spring on the gate, my friend broke his screwdriver. The one that he inherited from his dad. No big deal, it’s part of a set and he has several others the same size. But he was upset–really upset–because along with the screwdriver, he felt like he lost a piece of his dad.
His rational brain knows that the screwdriver isn’t indicative of his dad’s presence or absence. His intellect knows that having the screwdriver doesn’t mean that he still has his dad, or that by not having the screwdriver he no longer has a hold on his dad’s memory. But his irrational side mourned the screwdriver. His emotional brain felt that he’d lost another part of his dad. As the wise poet Ralph Waldo Emerson said, “Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”
I’m very familiar with the destroying of intellect in times of grief, and I know just how my friend feels. After my mom died, I hung on to all kinds of her stuff: cookbooks, costume jewelry, unfinished embroidery projects, even her ratty old college sweatshirt. My dad has the more personal items — her glasses, her wedding ring, her driver’s license. I desperately wanted a piece of her, any piece, to remain, so I clung to her things in hopes of finding pieces of her.
Guess what? It doesn’t work. The desperation, the clinging, the hoping against hope are all for naught. Once the person you loved with your whole heart is gone, snatched away too soon by illness, there is no holding on to them. I’ve learned this slowly and painfully in the almost seven years that my mom has been dead. Her stuff is just that — stuff. It’s not her. She’s gone and that’s the brutal finality of experiencing the death of a loved one.
I’ve written before about how grief sneaks up on us, and can buckle our knees out of nowhere, even after years have passed. I know that this is what happened to my friend the other day: he was going about his business, engaged in a simple task that took little effort and yet would yield great satisfaction when done. The sun was shining, the workday was done, and a cold beer accompanied him as he unscrewed the rusty, spent screws from my gate. But once the screwdriver broke, so did the dam that most days holds back the torrent of sadness that is life without his dad. How many times has he said he wished his dad were here to help him with a DIY project, or to admire his handiwork upon a project’s completion? Too many times to count. And in the midst of an ordinary task being done on an ordinary day, the torrent rushed through.
“It’s so curious: one can resist tears and ‘behave’ very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer… and everything collapses.” ~Colette
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.
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 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!
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.
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.
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.
No, this post isn’t really about cupcakes. Sorry. It’s about a funny shirt and stupid people.
I wore this shirt to the gym on Friday and then to run errands afterward. I meant to write about it then but was busy being the hostess with the mostess and am just now getting to it. Anyhoo, the shirt:
My friend Jodie sent it to me in the midst of my cancer “journey” and I howled with laughter. I wore it proudly after my mastectomy and before reconstruction, when my chest was flat as a board and very conducive to easy reading. I wear it proudly now after reconstruction, and will continue washing it on delicate and hanging it to dry in hopes of prolonging its life.
I usually get a comment or a sly smile from my fellow gym rats when I wear this shirt, but Friday I encountered two older ladies who didn’t appreciate the humor. The first one looked at me and tsk-tsked then told her friend how inappropriate she thought it was to make light of such a serious situation. She wondered aloud why our club doesn’t have a strict dress code.
You know me, I couldn’t let it go. Just couldn’t turn the other cheek and walk away.
I said excuse me, I couldn’t help but overhear (not that she was trying to be discreet in her criticisms) what you said about my shirt. I’m curious what exactly about it bugs you? She replied that she thinks it’s disrespectful for people to be flippant when they know nothing of the disease.
I pointed out as nicely as I could (which probably wasn’t really all that nice) that I do indeed know something of “the disease.” She looked a bit surprised when I told her that I myself had breast cancer and am proud to be a survivor. I like the fact that people in the gym who don’t know me see my shirt and realize that cancer survivors can get on with life. I’ve had several people tell me that seeing me at the gym is inspiring to them, and on days when they’re struggling through their workout, they see me hitting it hard and decide to step it up a bit. After all, if the girl who had cancer can do it, they can, too.
But Judgemental Lady didn’t see it that way, apparently. See, she thought there’s no way I could be a cancer survivor because I’m too young. Women my age don’t get breast cancer, she says.
Let’s just say that she got a bit more education on that topic than she might have wanted.
I informed her and her friend that according to the American Cancer Society, nearly 20,000 breast cancer diagnoses a year are delivered to women younger than 45. That my breast surgeon has performed bilateral mastectomies on women younger than me. That my OB-GYN — who diagnosed me — recently diagnosed a women who is 27 years old. That young women with breast cancer fight a different battle than their older counterparts, for many reasons: facing more aggressive cancers and lower survival rates, (hopefully) battling the beast for more years than we’ve been alive, a lack of effective screening for women under 40, being underrepresented in research, having young kids at home, dealing with fertility issues, enduring early menopause, and struggling with serious body-image issues being among the more egregious.
No charge for the lesson, lady.
I set her straight and went on about my business. While waiting in line to return a coat that was too small for Piper (yes, little piggies do need a coat, even in Houston), a lady told me she liked my shirt.
Oh, really? How refreshing.
She went on to ask if it was a fundraiser for cancer. I had to think about that for a minute, and while I was trying to figure out what in the sam hell she meant, she started blabbing about a bake sale her kid’s school did for cancer. She thought my shirt referred to a bake sale! Now that’s a new one.
I explained that no, it’s not a fundraiser and it’s not a bake sale, that I myself had breast cancer. She still looked puzzled, so I spelled it out for her: “cupcakes” is a euphemism for breasts, and mine “licked cancer” by defeating the wily beast that was laying siege to my body. I guess technically my cupcakes didn’t lick cancer, but my surgeons did by amputating said cupcakes, but that seemed like more detail than the conversation warranted. She smiled at me in the manner one would smile at a deranged lunatic on the loose and scooched her shopping cart back a little bit.
I don’t care what the general public thinks; I love my shirt and will continue to wear it proudly. Judgemental old ladies and bake-sale zealots be damned.
I’ve been remiss in blogging the last few days. I could be a big baby and say I haven’t been feeling so great, but I won’t. Even if it’s true. Cancer. It’s always cancer. Seems that nary a day goes by without someone I know or a friend of a friend being newly diagnosed. It would be easy to get bogged down in all things cancer, but I won’t.
Something bad happened last week. Not “recurrence” bad, but side-effect bad. Something I’ve been scared shitless of since learning that this foul thing even exists. Until last week, said foul thing had not gotten ahold of me, but then on Wednesday last, everything changed.
The dreaded swelling of a limb following surgery, particularly surgery in which lymph nodes are removed.
Since my mastectomy 18 months ago, I’ve been on guard against the dreaded lymphedema. I have a fantastic lymphedema specialist, Tammy, who has become not only a vital member of my health-care team but also a great friend. Visiting her is like a trip to the spa — serene setting, trickling water fountains, dim lights, soothing music, and lovely & caring women. It’s a safe haven among the shitstorm that is breast cancer.
I started seeing Tammy as a preventative measure all those many months ago, and while I never had lymphedema, she worked her magic on my scar tissue and rough spots after my surgeries. With her help, and that of office manager and “salt police” Janice, I’d educated myself about lymphedema and had, until now, been successful in preventing it.
All that came to a screeching halt Wednesday. The proper care, the education, the prevention, the vigilance — gone. Just gone. My left arm swelled up like a balloon and felt heavy, tingly, tender, and sore. I was scared.
The thing that scares me so much about lymphedema is that it can come out of nowhere, months or years after surgery. And it can be permanent. The last thing I want after being handed a cancer diagnosis at age 40 is to go through the rest of my life with a balloon arm. That would put a serious crimp in my tennis game.
Luckily, Tammy and her staff of lymphedema slayers were on the ball and treatment commenced right away. I got to experience the joys of “the pump,” in which the offending limb is encased in a stockingette, then stuffed into a huge, padded wrist-to-shoulder sleeve reminiscent of the padding used to train police dogs, then encased in a plastic-y sleeve attached by thick cables to a machine that squeezes the limb rhythmically. The idea is to squeeze the excess fluid out of the limb and guide it back through the battered lymph system to then be filtered out of the body and released into the atmosphere, hopefully never to be seen again.
The plan was to rest (egads), avoid lifting anything with my left arm (bye-bye strength training), and wear the compression sleeve (oh so fashionable, and yet another palpable signal to the world that there’s something wrong with me). Pump it every day, drink as much water as I can hold and then some more, and hope it goes away. After laying low, being a gimp, wearing the sleeve, pumping and adding some k-tape, and drowning my innards 5 days, there is some progress. The swelling is down, but not totally gone. I want it gone. IMHO, 5 days is more than enough time for it to be gone.
Y’all know how much I loooooove being a patient, enduring complications, and being sidelined.
This latest complication and sidelining was rather tough. Mentally more than physically, which is a change. I guess it’s good to shake things up every now and again. The getting back to “normal” was getting kinda boring, and the idea of finally putting this cancer experience behind me probably was a pretty stupid one. Why not insert a wrench into the plan?
There are lots of things that aggravate the hell out of me with lymphedema. Lots of things. First and foremost is how rudely it interrupted my foray back into my “normal” life after the latest surgical procedure. I’m a busy girl and an impatient girl, so the “stop-start-stop-start” nature of getting back to “normal” after cancer and in between the 8 procedures I’ve had is trying. Just as I was getting back to “normal” after the October revision and hitting it hard at the gym, the balloon arm strikes. In fact, one of my fellow gym rats was just telling me, the day before the lymphedema arrived, that it looked like I was back. As in, back to my usual workout routine and getting stronger. Two weeks in a row, I’d had 3 hard workouts in a row. I was actually starting to see some progress, and with no more procedures on the horizon, my future in the gym seemed quite bright.
I should have known it was just a tease and wouldn’t last. I should have realized that cancer and its many ugly aftereffects will always have a hold on me and will get the better of me. I should have recognized that no matter how hard I work and how many things I do right, my arch nemesis will forever be skulking around in the shadows, waiting for the perfect time to shit all over me once again.
Words and images of battle are often ascribed to cancer. Some cancerchicks take issue with that but I’m not one of them. Having written this blog — mostly about cancer — for the last year, I’ve come to realize that it’s hard to talk about a cancer battle without well, calling it a battle. I’m not even sure what else one would call it. “While undergoing treatment for breast cancer” seems rather cumbersome; “While undergoing treatment for breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” doesn’t quite work, but “While battling breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” is a bit more succinct. “During the time in which I was ridding my body of cancer” is pretty clumsy, but “During my fight against cancer” works quite well. I like efficiency, so the battle metaphor works for me.
One thing I don’t like about it, though, is the idea that those who “lost the battle” with cancer didn’t fight hard enough or were somehow at fault. Cancer is totally random, people. It strikes those who take excellent care of themselves as often as it strikes those who are not so careful with their health. Survival depends on a lot of things, and sadly, sheer force of will is pretty low on the list. If survival were tied to will, my sweet mama would be alive and probably ringing me up on the phone right now to ask me if I’ve mastered the art of pie crust yet and to suggest that I let her little darlins, aka my children, have enormous ice cream sundaes for breakfast. She fought like hell and did every single thing her team of doctors at MD Anderson told her to do, no matter how tired she was or how crappy she felt. She endured more awful stuff than I like to remember. She wanted to live to see her little darlins grow up (and to hassle me about not giving them enough treats/presents/leeway/benefit of the doubt). She fought like hell, and waged a mighty battle, and was a tireless, non-complaining warrior. And yet, she still “lost.”
Cancer, and the battle one’s life becomes when diagnosed, is on my mind today, as it often is, but today even more so than usual. Another friend has been diagnosed, and my heart is so heavy. My thoughts return to her often, and I’ve felt just plain sick ever since I heard the terrible news. Cancer comes after people indiscriminately, and it seems to me it gets the good ones just as often as the mean ones. My newly diagnosed friend is most definitely one of the good ones. She deserves so much better than pancreatic cancer. How someone with such a sweet and gentle nature and such a giving heart can fall victim to such a merciless fate is beyond me. And yet, she begins her epic battle today.
I’m not naive enough to wish for a world free of cancer. But I do wish there was a sliding scale. If you’re going to get it, in all its ominous forms, why can’t the scope of the disease be equal to how nice a person you are? Why is it that “only the good die young,” as Billy Joel sagely points out? It’s just not fair for cancer to wage war on someone who is patient and kind when someone who’s vain and shallow gets a free pass. Or for cancer to creep up on someone who’s worked all his life and is ready to finally enjoy retirement, while someone who’s dishonest and rude escapes unscathed. I just hate that cancer pounds on the door of someone who’s trying to do all the right things, yet skips completely the person whose main concern is keeping up with and besting her neighbors. Where’s the sense in cancer claiming a delightful human being who would give you the shirt off her back, yet ignoring the not-so-delightful human being who is petty and small?
I’d like this system a lot better if there were a sliding scale.
I thought about titling this Deliverance, as in the iconic 1972 movie. Like the movie, this week has been fraught with a “grueling psychological and physical journey” as I once again maneuver the rapids of this cancer “journey.” Ok, this week hasn’t been so fraught with the physical journey, as the most taxing part of it has entailed sitting in doctors’ waiting rooms for hours on ends. Not exactly a physical trial, but what it has lacked in the physical hardships, it’s made up for in the psychological difficulties.
If you haven’t seen the movie Deliverance, consider this a tip: it’s not pleasant to watch. Yes, it has Jon Voight and Burt Reynolds, but it’s also got some inbred locals and some nasty mountain men. The term “squeal like a pig” will never seem the same after one particular scene in Deliverance. The “Dueling Banjos” may well be forever lodged in your brain as well. Good luck getting that “song” unstuck from your head.
In the movie, the city slickers take a canoe trip down a river in a remote part of Georgia. They want to travel an uncharted section of the river before a dam project forever changes the river’s course. Initially, the trip is thrilling and chock-full of natural beauty, but things take a decidedly ugly turn as the foursome gets separated and the river becomes rougher. Eventually, the men are face-to-face with the reality of survival as they struggle to prevail over nature and win back the ability to exist in a civilized manner.
Going toe-to-toe with the worst that nature dishes out is an epic journey, much like the cancer “journey.” Cancer has dished out some nastiness, and my body has struggled mightily in an effort to right the listing ship and get back to “normal.” This week has been far off of normal as I’ve encountered some trouble in getting to the next surgery, the oophorectomy. The surgery has always been in the plan, it was just a matter of when to do it. The time is upon me, but the OB-GYN I met with Monday left me with more questions than answers in what should be a settled matter. In addition to being hell-bent on reiterating the risks and espousing the wide-ranging unpleasantries of surgical menopause on a “young” woman such as myself, she introduced a new fly in the ointment by decreeing that a laparoscopic oophrectomy was not an option for me because of the existing abdominal scar from The Big Dig.
Cue the confusion and emotional scrabbling that occurs when a doctor brings up an issue I’m neither prepared for nor expecting. Just as I’m wrapping my head around the new idea of open surgery and all its risks and recovery issues, everything changes. Now I feel compelled to get another opinion on whether this surgery can indeed be done laparoscopically. And that’s what I’m going to do.
So as much as I hate the idea of getting yet another doctor involved, and as much as it pains me to realize that this “journey” is yet again complicated by things beyond my control, I pulled my battered self up by the proverbial bootstraps and made the appointment. And I will endure more hours waiting for another doc to weigh in on my disheartening situation. Getting on the phone and scheduling an appointment doesn’t seem like that big of a deal, but when you’re confused, emotionally drained, and frankly, pissed off at the world, it is a big deal. It also means rehashing–again–my long, complicated history with breast cancer and infection, which truly is something I’d like to just forget, put behind me, and move on down the road. Where is that damned magic wand, anyway??
All this bitchin’ and moanin’ leads me to the reason for this post: the day of deliveries. Just when I was at my wit’s end and was beyond ready to give up and declare myself the loser in this epic battle, I hear the rumbling of the FedEx truck coming down my street and stopping at my house. Imagine my utter delight when a box appears on my front doorstep.
This delivery smells good, feels nice and weighty, and has a delicate crumb sneaking out of the wrapping.
A homemade pie that’s magically appeared on my doorstep.
Just when I needed the boost that comes from a decadent treat, there it is.
I cut that pie and scarfed down a big ol’ piece without thinking twice. I couldn’t care less about the calorie content or the ungodly amount of sugar contained in that piece. Instead, I enjoyed every minute of it. Derby pie, which is pecan pie on steroids, is something that would normally be a very occasional treat; in fact, it’s been more than a decade since I’ve had a piece. But the flaky, buttery crust and the nutty, caramely, filling with the sinful addition of chocolate chips and whiskey could not have come at a better time. How great is that to have a delicious pie that’s not only sweet and gooey and nutty and chocolatey but also boozy? Heaven on Earth. Finally, something worth smiling about! And what a wonderful coincidence that I’m eating delicious homemade pie mere days after I guest-blogged about … drumroll, please … homemade pie on my friend Marie’s blog. Marie is going through a terribly rough time right now, and her blog friends banded together to stand in the gap for her while she tends to the awfulness that is a dying parent (Huge kudos to Lauren for being the mastermind behind this lovely gesture). I was beyond honored to help, and thought pie a fitting subject to distract us from the gravity of her situation. I’m going to go out on a limb here and declare pie a temporary panacea to the emotional trials, large and small, that plague us.
As if my full belly and sugar-high weren’t enough, I soon heard the rumble of another delivery truck at my house and could hardly believe my fortune at getting another surprise delivery. Two in one day? Fantastic!
Oh, how I love fresh flowers. There’s something so cheery about the pinks, yellows, and greens all working together to present a beautiful palette. I just adore the way the individual flowers nestle against one another to comprise a unit. They’re separate but when combined with others, they become cohesive. And the fact that their lifespan is fleeting makes me cherish them all the more — enjoy them while they’re here. Another decadent indulgence that makes me smile. Many thanks to my pie-shipping friend in Minnesota, and to my in-laws in Kentucky for turning around a rotten week. Three days in, I was ready to chuck this week and start over, but no more.
Finally! Something wonderful comes my way.