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?
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.
It’s Thanksgiving and I would be remiss if I didn’t remark upon the things for which I am thankful. This time last year I was fresh off the post-mastectomy infection train and trying to navigate life as a survivor. This year, the infection is finally in the rear-view mirror, and 8 surgeries later I’m on the road to reclaiming my normal life.
Living in Texas, where it’s warm enough to swim on Thanksgiving. People joke about how Texas is a whole ‘nother country, and it’s true. Everything is bigger here, and better.
Tennis. I’ve learned so much from the game, most notably humility, and continue to be challenged. People laugh when I say I started playing tennis because I like the clothes and had no idea how hard a game it is, but it’s true.
Things that challenge me to get outside of my comfort zone. Like modeling in the Couture for the Cause a few weeks after my latest hospitalization last fall. Yikes. After wondering what in the sam hell made me agree to do it, I ended up having one of the single best experiences of my life. And plan to do it again in March. Get your tickets now, before it sells out!
At the risk of alienating friends and loved ones and inciting harsh judgement against my Scroogy self, I say it again: I hate Christmas.
The reasons are many, and I won’t rain on anyone’s parade or crush anyone’s candy cane by listing them here. Suffice to say that the “holiday season” fills me with dread, and I grit my teeth and power my way through it. I wish I enjoyed it. I really do. While I do smile sweetly at the cashier who wishes me “happy holidays” on November 1st, it’s a pretty fake smile.
I do enjoy the annual Christmas Eve get-together with my cousins — a great meal, festive drinks, and the tradition of gathering in a circle to exchange gifts. My cousin Jimmy’s Texas Trash is a most-favored gift every year. I enjoy getting cards and photos from far-flung and nearby friends, seeing how big the kids are getting and taking in new additions of puppies, boats, and what-not. Ok, and the music. I do like Christmas music.
But that’s pretty much it.
I love Thanksgiving, and it’s a shame that it’s overshadowed and steamrolled by the creep. Thanksgiving is the perfect holiday: gathering around a table to celebrate the bounties of life with nary a gift exchange in sight. It’s about the sentiment, not the stuff.
Each year I wonder, sometimes aloud and sometimes in my head, at what age my kids will be old enough that I can skip putting up a Christmas tree. Last year I finally caved and bought an artificial, pre-lit tree, to ease some of the drudgery. I should have done it several years ago when our real tree had a wonky trunk, only to be discovered after it was encased in gallons of water, lit to the heavens, and laden with fragile ornaments. The day that tree came crashing down, literally, I added another entry to my “I hate Christmas” list. Water and pine needles all over my hardwood floor, ornaments shattered into millions of pieces, lights half on and half off, and two doggie cardiac arrest cases later, I should have pitched the deficient tree and its remaining lights and ornaments right into the street and sworn off this wretched holiday altogether.
But I didn’t. I went to the garden center and got another tree and started all over, cursing all the way.
My dislike of the most wonderful time of the year hasn’t mellowed, and this year when the Christmas merchandise appeared in the grocery stores the day after Halloween, I was ready to punch Santa square in the face.
I know, I know that would rocket me straight to the top of the naughty list, but I suspect I’m already there.
Halloween candy bags had barely been picked through when the marketers decide it’s past time for a holly jolly Christmas. It’s especially painful to endure in Texas, when it’s 89 degrees and shoppers are sweating their way through Target. There’s something just plain wrong about summertime conditions juxtaposed with a winter wonderland. ACs are blasting, but we’re dreaming of a white Christmas.
The Christmas creep seems to start earlier every year. Maybe it’s right on time and I’m just getting crankier every year, but it seems like the school supply displays are barely dismantled before the light-up wire reindeer lawn ornaments magically appear in a big box retailer near you. One of my neighbors has a Christmas light installer every year for the outside of his house. They started last weekend. Oh joy. Maybe they’ll get the Griswold Award this year. Or throw a breaker. The wreaths have been up on the shopping center exteriors and neighborhood entrances for a while now, too. I can’t very well avoid the grocery store, and I have to get into my neighborhood somehow, which means it’s hard to avoid the Christmas creep.
The Black Friday deals are already on, and inciting panic attacks. Just this morning I had 2 emails in my inbox, one from The Gap and one from Off 5th, telling me that Black Friday Starts Today!! With Black Friday Prices Now!!
But it’s only Wednesday. Black Friday should be on Friday, not Wednesday. No exceptions. Stupid creep.
My favorite girl hates the creep, too. Loves the gifts, but hates the creep. She writes a little blog herself, and recently posted about the creep. Now, let me warn you that her writing is a little out there. She’s a big-time outside of the box type thinker. Sometimes her writing doesn’t make a whole lot of sense, but it’s always creative and wacky. For example, her recent post on Reasons Not to Carry French Fries Around Buffalo:
We all know that you shouldn’t carry French fries around buffalo,but do you know the reasons?
1. Buffalo come from Belgium, where French fries were originally made, they find it offensive that’s it’s called French.
2. Scientists find it unhealthy for buffalo to be eating French fries,also scientist are always watching you.
3. Buffalo have the worst fast food craving out of all the animals except mice, and when you eat a French fry they want a French fry then they pelt you with mushrooms. So stay away from those undersize Musk Ox.
Her post on the creep is titled Nobody Cares About Thanksgiving, and she has a point, if I do say so. An excerpt:
This news was discovered by an insane 9 year old. You know when it’s 3 weeks before Thanksgiving and there are already Christmas specials on TV, and in magazines there are 20% off on Christmas gifts for the little acorns. Now it’s a way to become a Thanksgiving Hater- Christmas Maniac-Rainbow Zombie!!! The worst part is the Pilgrims come back and they are all upset that nobody cares about them and their back hair!! So stop the Christmas specials before all of the zombie rainbows and apple sharks start to fight over the cow that makes the best milk!!! Or was it spaghetti nobodies turn into spaghetti somebodies? Either way no one wants that to happen, (except the spaghetti nobodies because they all want to be a somebody).
Last summer was pretty bad for me and my family. It started innocently enough, with a bilateral mastectomy at age 40 on May 13th, and while I healed quickly and nicely from that, it all went downhill fast.
Just after my 41st birthday, I got a nasty post-surgery infection. No one saw it coming, and to say it took us all by surprise would be a gross understatement. The odds of contracting a nosocomial infection are not small, but my infection is somewhat rare, quite wily, and super slow to treat. In the scope of inconvenient infections, I won the lottery.
Last night was the first game of the All Star tournament for Payton’s team–something I missed entirely last summer. Being present last night to watch my boy do what he does best with his team of like-minded and uber-talented buddies was one of the simplest yet deepest thrills of all time. We take a lot of things for granted in this life of ours, and being able to sit on metal bleachers in the Texas heat in June to watch youth baseball is one of those things. I’ve sat through thousands of games for my little ball player, and hardly thought twice about it beyond the random, mundane thoughts associated with this endeavor: who are we “versing” (as our catcher, #10 Carl says)? Where is Payton in the line-up? Are we on the shady side of the field? Did I remember my stadium seat? How many times will Macy hit the concession stand? How many pieces of bubble gum does Pay have in his mouth at once?
Those are the thoughts that traverse my brain during a game, along with the usual baseball stuff: What’s the run rule in this tournament?; How did we fare against this team last time we met? If the ball hits the bat then hits the batter, he’s out, right? Rules and regulations course through my head as I follow the many games my boy has played.
Last night was different, though. As I was ready to walk out the door, our bestie Ed reminded me that I’ve come a long way since this time last year. Several of the parents on our team remarked at the park that it’s nice to have me there this year. A couple of the coaches said something about having missed me and my big mouth last summer; once a cheerleader, always a cheerleader.
I have come a long way since last summer, and watching my kid play ball is something to be savored, something to most definitely not take for granted. The metal bleachers, the roar of the crowd, the (gross) smell of hot dogs, the infield dirt blowing in my eyes…every bit of it is special to me on a whole ‘nother level.
Last night also marked the first time a newspaper reporter has covered the game, and seeing my boy’s name in print in association with his rock-star team’s blowout and his personal success is something I’ll be savoring for a while. Before cancer came into my life, I would have enjoyed reading the article, and likely would have forwarded it to our nearest & dearest, but this time, I’m carrying the feeling of that article along with me, inside my heart, in that little space where the gratitude lies.
I was flipping through my old Caring Bridge blog, and happened upon this entry, which seems even more prescient a year later. I wrote this on the morning of my mastectomy, before leaving for the hospital. No doubt I was antsy, preoccupied, and ready to get the show on the road that morning. It seems appropriate to reprint it today, in light of the theme of today’s blog.
I realize that when cancer comes into one’s life it disrupts everything and changes “the normal” forever. Dr Dempsey, my superstar breast surgeon, told me you no longer schedule cancer around your life, you schedule your life around your cancer. Life takes a backseat to war.
With cancer, I join a club that I never signed up for and for which I never wanted to become a member.
No matter, I now have a new normal. The new normal is all about taking care of what’s most important. We hear this all the time, but when you really put it into play in your own life, you know exactly what it means. For me, it means facing this beast head on and telling the bastard repeatedly that it doesn’t stand a chance. It means never once, not even once, considering that this cancer will win. It’s not even in the game.
It also means all the pithy stuff you hear about, like savor every day, make the most our of whatever you’ve got. That’s also true. For me it means truly embracing and enjoying my kids and my family, and letting my friends into my life — warts & all — on a whole new level. Y’all may well see my house a mess, which doesn’t happen much. You may see me in a grumpy mood (ok, you’ve seen that, esp on the tennis court!). You may see me just a teensy bit vulnerable, but only for a short time so don’t expect a repeat performance. No matter what, there is a new normal, and I’m all over it.
One of the many blogs I read is a fine one published by a lovely woman named Marie in Ireland. It’s called Journeying Beyond Breast Cancer, and Marie’s goal via her blog is to provide some guidance on how to navigate the “post-treatment limbo” that cancer survivors find themselves in once “it” is all “over.” There’s plenty of information out there for those who’ve recently been diagnosed and for those who are actively in treatment, but not much out there for the “what next?” portion of the “cancer journey.” I was honored to be a guest blogger on Marie’s site in February, and I always come away from Marie’s blog feeling enlightened and empowered. (And really, I’m not just sucking up because she’s giving away a copy of Sheryl Crow’s new cookbook, which I really, really, really want. I mean it. Marie’s blog is fantastic.)
Marie posed a challenge to her blog community to write a post about our “other” lives, about who we are when we’re not fighting cancer. We cancer-chicks who blog tend to know a lot of intimate details about each other, as is the nature of the beast we all have in common, but we don’t always know a lot about each other besides the beast.
Never one to back away from a challenge, I ruminated on my B.C. (before cancer) life. It took me awhile to remember, so wrapped up have I been in the cancer-vixen lifestyle. I racked my brain to recall what it was that I used to do with myself absent multiple doctor’s visits, endless testing, countless trips to the pharmacy, and hours of feeling yucky.
It was a perfectly ordinary life. I’m not one for a lot of drama; I’ve been to high school, and don’t have any desire to replay it. I have no patience for grown-up “mean girls” and so have a tight circle of true friends. We live an ordinary suburban life, most of us at home during the day, having forgone careers to raise kids, although several of my besties do work outside the home and do amazing things like crude trading and nursing. Ok, I’d better clarify: one friend trades crude oil, and another is a nurse. Since this blog is usually about all things boob-related, I don’t want to give the impression that I’m talking about crude nursing, as in off-color breastfeeding.
So my life was pretty ordinary, pre-cancer. Ordinary, but good.
I left my editing job 12 years ago, when Payton was born, to become a full-time mommy, and after Macy joined the herd my workload doubled but so did my heart. As my kids got older and started school, my life took on the pattern of theirs and I volunteered at their school a lot while also spending some time doing my own thing. I walked that fine line between being a full-time mom but still being my own person. Like millions of other moms at home raising young kids, I packed my kids’ lunches while doing laundry and tried in vain to keep up with the household chores. I stole some time from the domestic hustle & bustle every day to go to the gym or play tennis, and made my to-do list while waiting in the carpool line.
My pre-cancer schedule was pretty full of ordinary things: kids’ dentist appointments, play-dates, sports, lessons, and parties. I served on the PTA board, was a tenured room mom, and worked the school book fair every year. Shortly after my mom died I was at the book fair, surrounded by books and overcome with loss. I missed my mom so much; she was an avid reader and we always talked about the latest stack of books on our nightstands. I met another mom who was volunteering that day. Jenny was new to our school, having recently relocated to Sugar Land. We chatted about books, and she shared with me that her dad had recently died, and she was swamped by grief, too. I decided then and there to start a book club, and to invite her to join me. Instead of allowing my sadness to rule, I wanted to find a way to diffuse it.
I had no idea at that time that Jenny was a breast cancer survivor and would become my mentor and tour guide through the “cancer journey.”
Meeting Jenny was an extraordinary event in my ordinary, pre-cancer life. Along with my Runnin’ Buddy and our nurse practitioner friend Laura, Jenny and I comprise a quartet of book-lovers who meet once a month and discuss the book we’ve read. Five years later, we’re still going strong. We’ve read some amazing books as well as a few clunkers, and are constantly on the look-out for the next great read.
When I first started running the book club, I would research book group discussion questions and print out a list for each of us. Over time, I’ve gotten lazy and now just highlight an interesting passage, a particularly pivotal plot point, or a bit of prose that speaks to me for whatever reason. This is the basis for our book club’s discussions nowadays.
I’ve always loved books, for their ability to transport us to other worlds. The written word is precious to me, and I suppose it’s in my genes; my mom was an English teacher, after all. I chose my college major (journalism) based on the right ratio of the least amount of math & science and the maximum amount of literature. My career in publishing and editing surprised no one, and I continued to read copiously after leaving the industries for motherhood. True, most of what I read was written for the preschool crowd with a heavy emphasis on pictures, but I started building my kids’ libraries long before they could read. I suppose it was perfectly natural for me to start a book club.
Just in case you’re wondering if I sit around and read all day when I’m not fighting cancer, the answer is no. I spend as much time as humanly possible playing tennis, then I sit around and read for what’s left of the day.
My friend Amy Hoover, who you “know” from the blog, is a great cook (she’s from Louisiana, after all), and she fed my dad when he was here for The Big Dig. When he told her that I ususally put some leftovers in the freezer for him along the way so I can send him home w a care package, guess what she did? Brought leftovers, which are in the freezer for him as we speak. Homemade spaghetti sauce, crawfish etouffe, Cajun chowder and who knows what else await Dad in the freezer, and he’ll live off her goodwill for quite some time. Good friend.
When I realized I would need dress clothes for Payton for Sophia’s funeral (he wears NOTHING but t-shirts & Nike shorts), Amy, who has 3 boys, brought over a pile of clothes — several dress shirts, 2 suits, dress pants, a bag of ties & 3 pairs of dress shoes.
Having a kid who is so averse to dress clothes seems like something out of a movie — a bad movie, probably one starring Chevy Chase or Bill Murray in their heydays, or maybe Ashton Kucher nowadays. Somebody sweet but bumbling, clueless as to why societal conventions like dress clothes should matter in the real world.
I’m long since over the wish that my little man would dress better. He is who he is, and one of the best things we can do as parents is recognize our kids’ innate beings and help that version flourish, rather than imposing our ideal on them.
J Crew would work, too. I can picture him in Crew threads for sure.
He could totally pull off the Gap or J Crew look. But pulling off the look would of course require him to actually wear the clothes. And therein lies the rub.
There was a brief period of time in which I could dictate what Payton wore.
The last time he wore khakis and a polo might have been at his Uncle Aaron’s wedding. I was pregnant with Macy, and P was young enough to not care what he was wearing, as long as he could run and jump and stir up trouble.
By the time Trevor graduated from business school, Payton was wising up about his wardrobe and started asserting independence. This non-baseball-themed t-shirt was a big compromise for him on this special occasion. Everyone else was all decked out in Sunday best. Including Payton. Because this little boy was discovering that a t-shirt and shorts were plenty fancy for him.
I am 100 percent sure that Aunt Sophia would not care one bit what Payton wears to her funeral services. In fact, I can almost hear her now telling me to leave the boy alone and let him be. Let him wear what he wants to wear; dress clothes don’t matter; and get him a snack–that boy looks famished. Yes, I can hear it now.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.