I was all set to write about the Taylor Swift concert Saturday night, and the super-big, amazingly fun surprise of having Nelly — one of my all-time favorite people — make a surprise visit on stage. But then something happened that was wonderful and terrible, all at the same time and in equal measures, and the concert and Nelly were summarily usurped, no longer important. That something? I met my mom in a dream. It was wonderful because it was so real; it was terrible because it was only just a dream.
I’ve got a heavy issue on my mind, and I’m not sure what to do about it. I’ve done some research, but need to do some more. I’ve solicited advice and opinions, and I’ve tried to listen to my heart. I know what I need to do, but I don’t want to do it, and so I’m ignoring that little voice inside me that usually guides me — and with startlingly accurate results — because I want the answer to be something other than what it is.
Just before I went to sleep, the issue was in the forefront of my brain, and I was thinking how nice it would be to talk to my mom about this issue. How sweet it would be to lay my troubles before her, and let her do that things that great moms instinctively do when their kids aren’t sure which way to turn. She was really on my mind, and I guess that as I fell asleep, my brain took that next step and fixed up a little reunion between my sweet mama and me via a dream.
It seemed so real.
She looked like she used to pre-cancer. She sounded like her old self, not the weakened, wizened cancer voice she spoke with toward the end. She had her great big smile plastered on her face, and her infectious laugh rang out and rolled over me in the most perfect waves (those of you who knew her know that laugh, and I hope to high heaven you’re hearing it in your mind’s eye right this second). She called me NanAnn, which no one else ever called me, and it was the sweetest sound my ears have heard in a long while. She enveloped me in one of her “squeeze the stuffing outta ya” hugs, and I lapped it up like a kitten with a saucer of warm milk. Even the hug. Especially the hug.
She was back. My sweet mama was back. And it was like she’d never left.
The location of our reunion is fuzzy, but it’s not important. We didn’t have a lot of time together, which I suppose is quite symbolic when you think about it. No one else was around, but it was tremendously noisy. I have a hard time focusing when there’s a lot of noise, which of course my sweet mama knows. She told me that noise was the cumulation of all the swirling thoughts in my head, and that if I could set this big issue aside, the noise would quiet and the answer would come. I told her I didn’t want to do that; I want her to tell me what to do. She gave me that look, that familiar look, that communicated a ton without her ever having to say a word. I remember that look, and I knew then & there that she was not going to do the hard work for me. “Why can’t something for once be easy?” I moaned to her. “Do you want it to be easy, or do you want it to be right?” she replied.
I want both. Duh.
But it doesn’t work that way, and out of all the people with hard-luck stories out there, I for one should know this.
How ironic that when Nelly took the stage and surprised the audience toward the end of the concert, it was to sing a song called “Just a Dream.”
“I was thinking about her, thinking bout me
Thinkin bout us, what we gonna be?
Open my eyes, it was only just a dream…
So I travel back, down that road
Will she come back? No one knows.
I realize it was only just a dream.”
Well, we have Mother’s Day and Father’s Day, Grandparents’ Day, and even Bosses’ Day for pete’s sake, so why not Cancer Survivors Day? Makes perfect sense, as there are millions of us around the world. I do wonder, though, why there’s no apostrophe in the title. I double-checked it on the NCSD website and sure enough, no apostrophe.
It’s today, by the way — I feel like I should wear a shirt that says “Kiss Me, I Survived Cancer” but I’m not really the kissy type. I guess I could wear my “cupcakes” t-shirt, which I love, but then it seems like my “cupcakes” get the credit for kicking cancer to the curb when really, they were the culprit in the first place. Without them, I never would have had breast cancer, so I’m not giving them the credit for having survived it. I will wear it to the gym, though, because I love the look on people’s faces as they read it, then do a not-so-subtle double-take at my chest.
So what is National Cancer Survivors Day all about, anyway? Probably something a little more meaningful than wearing a snarky t-shirt and giggling to myself as the shockwaves from said shirt ripple through the gym. According to the NCSD website,
“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.”
Well, I’m certainly proud to be part of an annual, treasured worldwide celebration of life. Although I think I missed the parade. Considering how many people are affected by cancer, you’d think this day would get a bit more press. There’s probably a Lifetime for Women movie about it and I missed that too.
As usual, I have lots of questions about this annual, treasured worldwide celebration of life. Who qualifies as a survivor? And when does survivorship begin? What time was the parade? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. I think it’s perhaps a bit more personal than that. I also think it’s more than just surviving cancer. I also survived a nasty infection and a nearly year-long regime of some pretty bad-ass antibiotics. I survived a complicated and intense reconstruction process, and I survived yet another long, hard recovery.
I considered myself a survivor as soon as my mastectomy was over. Surgically removing the tumors, and thereby the cancer, from my body was when my status changed from “regular person” to “survivor.” So for me, I became a survivor in the late afternoon of May 13, 2010. Although I certainly didn’t feel like much of a survivor at the time, bandaged and battered, stitched up and sore. Moving my body at all was a seemingly unattainable feat, and raising my arms high enough to put chap stick on my lips was definitely unattainable. I wasn’t able to slick my own lips for a day or so.
At the time, I had no concept of what a double mastectomy truly meant or looked like. So focused was I on ridding the cancer that I gave zero thought to the aftereffects of the surgery. Even now, in the hazy afterglow of just one year’s time, I struggle to remember exactly what I looked like after that first surgery. In fact, when Trevor gave me The SCAR Project book for my birthday a few days ago, I looked at the portraits of mastectomied women and asked, were my scars vertical or horizontal? For a brief moment, I couldn’t remember. (They were vertical, BTW.)
That’s why I’m so grateful for things like The SCAR Project and for women like Deborah Lattimore. Like the women who were photographed for The SCAR Project, Deborah Lattimore didn’t want to forget what she looked like after being mastectomied. This defines a survivor, IMHO: facing a shitty situation with not just courage but with moxie. Reading Deborah’s blog, I’m so impressed and moved and in awe of her take-no-prisoners attitude. I immediately felt a kinship with her as I read what she wrote about her post-cancer silhouette soon after her bilateral mastectomy: “my body is still ‘re-architecturalizing’ and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!” Cheers to Deborah on this annual, treasured worldwide celebration of life. Wish I could tell her happy National Cancer Survivors Day to her face, and to bask in the supreme power of a strong, confident, self-assured woman who tells cancer to bugger off then shows the world the true face of a survivor. No padded bras, no prostheses here. Not that there’s anything wrong with padded bras or cutlets. How we face the world post-mastectomy is an immensely personal decision, and I in no way want to imply judgement on how any woman makes that decision. For me personally, I applaud women like Deborah who celebrate their mastectomied bodies and view them as a badge of honor. In our breast-obsessed culture, this is no easy thing.
So happy National Cancer Survivors to everyone. I’m thinking we should all have cake. What kind of cake is appropriate for NCSD? Something festive, for sure (you know how I love celebrations). This one is nice:
Love the colors, but the pink butterfly kinda creeps me out.
Nah, I’m not much of a cat person, and it’s not a birthday cake I’m after, although I do love the idea of the cat eating a fish-shaped cake. Maybe we survivors should eat a tumor-shaped cake. Ewww, gross. Never mind.
Or not. Definitely not.
Today’s the day, people.
I’m paying a call on my true love. Nope, this isn’t a tell-all expose a la Arnold Schwarzenegger.
I’ve been cleared by my favorite doc to start playing again. To ease back into it and with specific instructions to stop in my tracks if I feel even a tiny pull in my 17-inch-long belly incision. That super-long, super-bad incision is healing up quite nicely, and it’s my job to guard it and baby it.
When I got the green light from my favorite surgeon, I asked his nurse to please put a note in my file and have him sign it to that effect. A permission slip of sorts, so that when I see him again in a couple of weeks and mention tennis, he doesn’t forget he’d given me the go-ahead. The last thing that man and I need is another argument. Although, it has been a while since we had one….
With the tennis ban being lifted, I realized that I haven’t so much as picked up a racquet since The Big Dig, nearly 3 months ago. In fact, I had to dig around in the garage for my tennis bag. Sadly, it had been consigned to the garage instead of riding shotgun like normal, and it hung on a hook, quite forlornly, I might add, all this time. Over the course of almost 3 months, things like stadium seats and insulated cooler bags were hung in front of my beloved bag, and it took on the role of wallflower instead of constant companion. I had to take my racquet out, just for a sec, and hold it in my hand. Just like old times.
Today’s return isn’t full of the fanfare the met my return to the court last fall, after finally triumphing over the God-awful post-mastectomy infection and all its myriad complications. You loyal readers know the story so I won’t bore you with the details yet again, but suffice to say that the bilateral mastectomy would have been enough, but the nosocomial infection that required 3 more surgeries, nearly a month in the hospital, and endless antibiotics was really enough.
No fanfare, because while returning to tennis after the mastectomy and infection mess was a lot, but it’s easy compared to recovering from the DIEP surgery. Good thing today is just a 1-hour drill, which is the perfect venue for me to see if I remember how to swing that racquet. I’m not giddy with excitement like I was last fall, because the cautious side of me is bracing for disappointment. For this return to not quite work out for me. Although I’ve been cleared, there’s no guarantee that my body is on the same schedule as my heart & mind, and I may well be met with resistance from the battle-weary bod.
See, this is one of the unseen side effects of a cancer diagnosis. Even after getting through all the hard stuff–comprehending the devastating news of diagnosis, all the gut-wrenching decisions, the surgeries & hospitalizations, the never-ending antibiotics & their grueling side effects, the cornucopia of doctors’ appointments, the worry & fear & fatigue–I’m still shell-shocked enough to automatically look for disaster. Although the 267 days of oral antibiotics worked and my infection is cured, there’s still a little part of me that assumes the worst. I can’t even remember the last time my skin opened up to let infected fluid escape, yet I still think I feel it a couple of times a week. It’s PTSD for patients.
So my job today is to say screw the PTSD. Can the shell-shocked tendencies. Bust right through the doubt. Ignore the niggling little voice that asks if I’m sure I want to do this.
Hell yes, I want to do this. More than anything else, tennis to mean means I’ve healed. More than being able to go about my busy little life, more than getting back into the gym, more than being able to lift my arms enough and twist my core enough to dress myself. Tennis means I did it. It’s over.
My friend who also battled the breast cancer beast has dusted off her racquet and returned to the game we both love. While I’m unhappy with the unfinished parts of my reconstruction and she’s unhappy with her not-yet-grown-back-in hair, we’re getting back in the game.
I’m going to take the advice of tennis legend Billie Jean King in my post-cancer tennis strategy:
“Ladies, here’s a hint. If you’re up against a girl with big boobs, bring her to the net and make her hit backhand volleys. That’s the hardest shot for the well-endowed.”
My friend and I are both differently-endowed than we were before breast cancer came to call, but we survived that unwelcome visit and are ready to tear it up on the court. Even if we both get our asses handed to us in match play, I suspect we’ll both be smiling. Happy to be there, happy to have a racquet in hand, happy to be alive.
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.
When I was a kid, I was afraid of two things: the seeds & pulp in a halved cantaloupe, and going over bridges. I have no earthly idea why the cantaloupe scared me, but it did. I remember watching my mom cut the fruit in half and dig out the seeds & pulp with a big spoon then flip the gunk into the sink to go down the disposal. Creepy.
The bridge thing started early. We used to go to a local park a lot as a family when I was a kid, and there was an old, wooden bridge with wide planks (maybe even railroad ties?) and a shallow stream running underneath. The wood was worn, and there were spaces between the planks, between which the stream could be seen. I held my breath all the way across, every time.
I’m not afraid of the cantaloupe seeds & pulp anymore, but bridges…a little bit. The Ship Channel Bridge in Houston gives me the vapors, and driving from Houston to New Orleans includes a series of loooong bridges over mysterious-looking bodies of water. I’m not crazy about the concrete jungle flyover freeways around here, and the Beltway going toward I-10 West has a pretty high on-ramp that gets my heart beating a little faster. I don’t have to hold my breath anymore, but I’m still just a teesny bit uneasy about bridges.
I was reminded of the cantaloupe thing the other day as I cut into one and cubed it up to serve with dinner. I chuckled to myself at my childhood self and fears, and in my head, felt some pride at only having had two little fears. Monsters under the bed never bothered me, nor did the amorphous Bogeyman. I didn’t need a nightlight, and don’t mind things that go bump in the night.
When my kids were tiny, I was a little bit afraid of becoming the victim of a violent crime. The idea of leaving those precious babies motherless unnerved me. Then my own mom died, while my kids were still pretty tiny, and I quit worrying about violent crime and began to fear cancer.
Little did I know that not even 5 years after losing my mom to stupid, wretched cancer, my newest, biggest fear would materialize.
Being diagnosed ahead of the curve, i.e., at a young-ish age, is a surreal experience. I remember well the feeling in the pit of my stomach when I got the phone call on April 26th to say that the biopsy indicated a malignancy. I’ll never forget Nurse Sharon telling me that Dr Dempsey needed to book some time on my calendar, which turns out to be a nice way of telling me to come and see them the very next day so they can hand me a diagnosis that will change my life.
When that fateful call came, Macy and I were shopping for a birthday gift for my cousin, and I had to pretend that everything was ok because I didn’t want to alarm my little girl. Trevor was out of town but en route home, and after I got the call we kept missing each other as he boarded a plane or I was in the car with the kids and not able to speak freely. We resorted to exchanging texts to convey the most horrible of news.
The kids and I went on to my cousin’s birthday party, me with a big secret but determined to put on a happy face and not ruin the celebration. It seemed torturous at the time to be unable to talk to anybody about what I’d just learned. In hindsight, however, it was probably a good thing because it gave me time to process the steaming pile of bad news I’d been served.
It took a couple of days before I really wrapped my head around the fact that I had breast cancer. The more people I told, though, and the more times I actually said the words, “I’ve been diagnosed with breast cancer,” the more real it became. Before long, the awful reality had set in, and I transitioned from shock to action.
Dr Dempsey has a rule of not accepting a patient’s decision on which surgery option–lumpectomy, single mastectomy or bilateral mastectomy–until at least 3 days after she delivers the diagnosis. I made up my mind pretty fast, but waited until 3 days had passed before I called to tell her. I’ve never regretted the choice I made.
The bottom fell out of my world, and many things changed with my diagnosis. My fear of cancer was one of those things that changed.
I don’t know how it happened or why, but I stopped fearing cancer. Maybe because it became such a huge part of my life, it lost some of its scariness. Maybe by being forced to confront it, and the myriad ways it had infiltrated my life, I became braver. Or maybe I just got sick to death of the damn topic. The more I learned about it, the less scary it became. Knowledge truly is power.
And while cancer is still scary, it doesn’t scare me. Going head-to-head with the beast has taught me an awful lot about myself. Most of it good. I know I can endure a lot, I know what’s really important, and I know that should the disease mount a counter-attack on my battle-weary body, I’ll be armed and ready. Not scared, but ready.
Remember these three lovely ladies? If not, read this. I wrote about my guardian angels and their unfortunate accident in which they flew off the shelf and crashed onto the floor.
They’ve been repaired and restored to their shelf in the kitchen, where they can watch over my family and me. I think they’re recovered from their trauma, but are likely wary of another episode and probably watch over me with a worried eye, thinking, “There she goes, crashing around the kitchen again like a crazy person. It’s only a matter of time before she bustles over here to grab a cookbook off our shelf, and down we go, smashed into bits on the hard porcelain tile.”
All three angels went to Ed’s magical workshop for repairs. They may want to ask about a frequent customer card, as they’ve been there before, and will probably end up there again. His rates are very reasonable, he does outstanding work, and he always manages to work in the casualties resulting from my carelessness.
This angel sustained the most extensive yet least noticeable damage. She pretty much snapped in half, suffering internal injuries but held it together cosmetically. You can see that she now has a long scar all the way across her middle, which is prescient as that’s what I too will have after reconstruction, since they’re gonna cut me hip-to-hip to harvest the skin & flesh to rebuild me up top. Ick. I wish I could manage as serene an expression as this Angel of the Heart in the face of my trauma, injuries, and recovery.
The Angel of Hope needed limb restoration, but thankfully she managed to escape the accident with her right arm intact, since it holds her lantern that she uses to watch over her careless charges. A single amputee is bad enough; a double would have been really tragic. She also lost part of her ponytail, but as we all know, hair loss is temporary, and hers did magically grow back at the workshop, and her scars are barely noticeable.
Sustaining the most overall damage was the Guardian Angel and her young companion. The decapitation was especially devastating, and sadly his head was never found. I wouldn’t be a bit surprised if Harry the eating machine found it and devoured it before he realized it wasn’t actually food. She also lost her head, but I found it and it, along with her hand, were restored to their previous state.
Thanks to everyone who wrote, called, or emailed with concern and support about these lovely ladies. Let’s hope they stay in one piece for a while.
Because breast cancer survivors don’t have enough to worry about, now there’s this: the FDA reported that women with breast implants have a small but slightly increased risk of developing anaplastic large cell lymphoma (ALCL), a rare disease typically affecting 3 out of 100 million women.
While ALCL is rare, it seems that women with implants may have a “very small but increased risk of developing the disease in the scar capsule adjacent to the implant.” ALCL is a cancer involving cells of the immune system, which scars the fool out of me. Scarier still is that this immune system cancer can appear anywhere in the body. ALCL is not breast cancer, but it can show up there, or anywhere else. Thankfully it is very rare: 1 in 500,000 women a year in the United States, and it’s even more rare to develop ALCL in the breast (3 in 100 million). Whew!
And while all women with implants could be at risk, whether their implants are for reconstruction or recreation, for the purpose of this post, I’m going to focus on breast cancer survivors who have implants.
Really?? After surviving breast cancer, enduring reconstruction and getting on with life, we also have to worry about this? You’d like to think (at least I would) that as a cancer survivor, you’ve suffered enough (I know I have). But apparently there’s no end to the the amount of suffering spewed by the dreaded cancer.
I’m so sick of cancer.
One of my bookclub buddies, herself an 11-year breast cancer survivor, just had to make a quick run to Alabama to visit her “surrogate mom” at the lake who appears to be losing her cancer battle.
My beloved aunt is recovering from surgery last week to remove part of a stage IV glioblastoma. I don’t even need to tell y’all how bad a stage IV glio is. Get well soon, Thea Sophia.
I saw a story on the Today Show about a 3-year-old girl who had a mastectomy (yes, you read that right, she was t-h-r-e-e years old) for a rare but early-striking form of breast cancer.
My tennis teammate and dear friend who endured diagnosis and a double mastectomy and has completed 5 of her 6 chemo treatments is battling hard, and she is an admirable warrior. This stupid disease has changed her body and robbed her of tennis for all these months. It’s forced her to live way outside of her comfort zone and to learn lessons she’d rather remain ignorant of, all the while still driving carpool, making dinner, overseeing homework, and keeping the household running. The battle has taken a lot out of her, but she still has a lot of fight left in her. And she looks amazingly beautiful in her sassy headscarf. Chemo may have taken her hair and has tried to commandeer her brain, but it can’t take away her smile and her fortitude.
I miss my mom every single day, and every single day I curse the wretched disease that took her life, too young and too soon. I could write all day and all night and not run out of things I miss about her. Stupid cancer.
Then there’s my own cancer battle.
I’m not a candidate for implants myself, since the post-mastectomy infection that snaked through my chest wall took its pound of flesh from the right side. I thought I was getting the short end of the stick by having to endure a much more complicated surgery and recovery than that required for implants. Perhaps I was wrong. Although who knows what the FDA will find as risky for breast cancer survivors who opt for different reconstruction methods. We can’t win for trying.
The good news is that I do indeed have a surgery date (gulp). My impatience, which I blogged about on Monday, paid off, so all those naysayers out there who were going to tell me that good things come to those who wait can shut it. Thank you.
Sonia, Dr Spiegel’s nurse, called me Tuesday morning to tell me that Dr Spiegel and Dr S had a meeting of the minds and found a date that works for both of them. Gulp.
It’s March 2nd.
Texas Independence Day. My cousin Ross’s birthday (hey, cuz). Also celebrating birthdays on that day: Dr Seuss, Sam Houston, and Reggie Bush. Oh, and my new boobs.
I just read, yesterday morning, that Elizabeth Edwards announced that “future cancer treatment would be unproductive” and that she had only months or maybe even weeks to live. And then she died. That same day.
I’m so sad. For her. For her kids. She’s suffered a lot already (let’s not even mention her jackass husband and all the suffering he brought into her life). She wrecked up my childish yet dogged desire to believe in a limited amount of suffering in one person’s life. I wanted to believe that losing my mom would be the worst thing to ever happen to me. So far it is, but when I look at Elizabeth’s Edwards’s life, and the fact that her 16-year-old son was killed in a car crash, I am smacked in the face with the reality that there is no limit to the amount of suffering in one’s life.
Obviously, I don’t know her, but she seemed to have a lot of class, regardless of politics or religion or her jackass of a husband. She lived most of her life in relative obscurity, practicing law and raising the family she vowed to create after Wade was killed. My heart breaks for her remaining children. Cate, who is in her late twenties, will likely become the mama to Emma Claire, 12, and Jack, 10. All three of them will have to navigate the treacherous terrain that is life without their mama. No matter how old you are, you never stop wanting your mom. Former press secretary Jennifer Palmieri said about Elizabeth, “Any room she walked into, she made it a home.”
That’s a real talent.
Elizabeth faced her breast cancer publicly and bravely. She was diagnosed in November 2004 and made headlines when she urged her jackass of a husband to continue his presidential campaign despite her Stage IV cancer.
Stage IV. That’s as bad as it gets, and the fact that she wanted him to continue his dream despite the tumor in her breast and the spots on her rib, lung & hip, is the epitome of selflessness.
She was brave, and she was a fantastic example to cancer patients everywhere that life goes on. Despite diagnosis, life goes on. Despite treatment, life goes on. Despite surgery, life goes on. Despite complications, life goes on. Despite John Edwards making a fool of himself and a mockery of all that his family held dear, life goes on.
And life did go on for Elizabeth. She worked hard: raising her family, writing 2 books, advising President Obama on health care reform, and doing her best to make a difference–for her family, for countless cancer patients, and for herself. Although she was all these things: attorney, author, advisor, advocate, she said often and proudly that her job was to be a mom.
She knew her cancer wasn’t curable, but treatable. She did all the right things and tried to stay strong, despite life on the campaign trail.
Her final statement reflects upon the kind of person she was and the sheer strength she embodied:
“You all know that I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren’t able to muster as much strength and patience as we would like. It’s called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn’t possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know.”
In a 2007 interview she spoke realistically about her cancer, saying, “When I was first diagnosed, I was going to beat this. I was going to be the champion of cancer. And I don’t have that feeling now. The cancer will eventually kill me. It’s going to win this fight.”
Her cancer did win, but she is a champion nonetheless. Rest in peace, Elizabeth.