You can’t run from trouble…
Posted: May 20, 2012 Filed under: literature | Tags: bendy straws, bestselling books, Cutting for Stone, flashbacks, Gregory David Robers, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, running from trouble, Shantaram, Uncle Remus 22 CommentsIt’s a quiet Sunday morning, and I’m alone with my thoughts. I’m up earlier than I might have chosen, thanks to one hungry little piggy. After a Friday night of interrupted sleep and a Saturday full of tennis, errands, swimming laps and a late dinner with a favorite cousin, I may well have stayed in bed a while. However, savoring a slumbering house amidst hte sunlight pouring in through the trees and hearing the sweet sound of birdsong while sipping a cup of strong coffee is better than sleeping in.
Plus it gives me time to read my book, Shantaram, which I’ve been dying to dive into but haven’t found the time. It’s been likened to Cutting for Stone, one of my all-time most favorite books ever. If it’s half as good as CFS, I’ll be one happy reader.
Quick synopsis of Shantaram: Mr Lindsay, our protagonist, has escaped from an Australian prison and fled to Bombay. There he meets Prabaker, a native of the slums who renames Lindsay “Lin” and becomes his always-smiling, eternally joyful guide to the big city. Lin falls for Karla, a mysterious woman with sea-green eyes, and pursues her amidst the backdrop of a lively bar called Leopold’s. Lin is “a magnet for trouble, a soldier of fortune, and a picaresque hero” who delves into the black-market world of false documents. I’m not very far into the 944 pages of adventure, but am intrigued.
As I settled in to read this fine morning, I came across an especially well-written passage, which brought me up short. Lin is talking to his new friend Didier in the bar about some of the more unsavory patrons among them. In an effort to avoid being overheard by the bad guys, Didier was “speaking out of the corner of his mouth, like a prisoner under the eyes of the wardens.”
A nice metaphor, for sure, but it gets better:
“In Australian prisons, that whispering technique is known as side-valving. The expression spoke itself clearly in my mind and, together with Didier’s mannerism, the words put me back in a prison cell. I could smell the cheap disinfectant, hear the metal hiss of the keys, and feel the sweating stone under my fingertips. Flashbacks are common to ex-prisoners, cops, soldiers, ambulance drivers, fire fighters, and others who see and experience trauma. Sometimes the flashback is so sudden, and so inappropriate to the surrounding circumstance, that the only sane reaction is foolish, uncontrollable laughter.”
I had a flashback myself last week, and while it didn’t lead me to foolish, uncontrollable laughter, it almost set off a full-blown PTSD attack. I was rushing out the door to get one kid to school and head to the gym, my usual weekday routine. I’m a stickler for taking my own cup to the gym instead of using the styrofoam ones provided. As if our bulging landfills need another cup tossed on the heap. In my haste to get out the door, I grabbed a straw for my cup and scooted out into the garage and into the car. It wasn’t until I was into my workout and gulping water like a crazy person that I realized the new batch of straws I’d bought were bendy straws.
Big deal, right? Bendy straws can be useful, especially if one is reclining while drinking. Or if, say, one is hospitalized for countless days after a post-mastectomy infection. Yessiree, folks, a simple, innocent bendy straw sent me straight from my normal routine of a morning workout directly to the days of being captive in a hospital bed, held hostage by a nasty mycobacterium. Just as Lin was instantly transported from a bar in Bombay to the hated Australian prison cell, I was back in the hospital bed, raging with fever and sick, sick, sick while a nasty bug set up shop under my newly implanted tissue expander. A one-way ticket to Crazy Town in hand, I took the express train down (bad) memory lane.
I wasn’t even thinking about infections, hospitals, antibiotics, or breast cancer when the flashback struck, but I suppose that’s the nature of flashbacks. Triggered by sights, smells, or sounds or, in my case, straws, flashbacks take over and not only interrupt our present business but also disrupt the rest of the day with their nasty after-effects. Interesting how bad memories are just as powerful as good ones. Unlike the good memories, which fill us with warmth and comfort, bad memories suffuse our souls with fear, anxiety, and panic.
The bendy straw that triggered this particular flashback went straight into the trash, and I tried my best to go about my day like a normal person. Finish the workout, chit-chat with my fellow gym rats, reserve a tennis court on the way out, get in the car, drive to the grocery store, fill my cart, unload the loot, take a shower, pick up kids, supervise homework, prepare dinner, clean the kitchen. From the outside, I looked like a normal person doing everyday tasks, but inside I was anything but normal and was once again a cancer patient, fighting my way through uncertainty, confusion, and balls-out fear. In that moment, cancer made me its bitch, and there wasn’t a single thing I could do about it. The only thing keeping me from a total meltdown was knowing that this flashback would pass, that the terror brought on by a simple bendy straw was fleeting.
But as I talked myself off the ledge with soothing reminders that this too shall pass, I know just as certainly that while the terror will pass, it will also return. Again and again, this flashback will haunt me. Perhaps each time it becomes less rapacious, less capable of felling me in one swift motion, but it will return.
“You can’t run away from trouble. There ain’t no place that far.” ~Uncle Remus
The circus may be gone, but the big top remains
Posted: May 11, 2012 Filed under: breast cancer, cancer fatigue, infection | Tags: DIEP breast reconstruction, life after breast reconstruction, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, psychological effects of breast cancer, the Big Dig 20 CommentsSaw Surgeon #2 last week about the next step in revising The Big Dig. Didn’t want to talk about it or blog about it at the time. I’m not sure why, but I suspect it has to do with Surgeon #2’s comment about me having “been to hell and back.”
Part of me thinks it should be very gratifying to hear Surgeon #2 say that. After all, I respect her immensely, and it’s quite validating to hear someone I think highly of say that I made it through a seriously trying time, and that I made it with flying colors. If there were a report card for cancer/infection/surgery progress, I think I’d have straight A’s.
No such report card exists, however, and a 4.0 in this particular course-load is meaningless. There is no honor roll in the ranks of survivors. Instead of a gold star, I have some big-time scars across my chest and belly. I’ve gained a few hard-won wrinkles etched in my furrowed brow, too, from the worry that accompanies a cancer diagnosis, a post-mastectomy infection, 267 days of oral antibiotics, and major surgery followed by not one, not two, but multiple revisions. There’s no end in sight to this circus. The fairgrounds are quiet, but the circus tent remains. The bearded lady has gone home, and the trapeze artists have ambled along, too. The wild animals are safely ensconced in their cages, and the carnival rides are dormant. The circus, however, lives on. It seems there is no end to the drama and three-ring craziness that is life after breast cancer. I hold out hope that at some point the circus will vanish in the night, and I will awake to find sawdust, peanut shells, and the faint smell of adrenaline and cotton candy. But alas, the big top remains.
google.com
I saw Surgeon #2 last week to get her opinion on the next step on this cancer “journey.” Like a traveling circus steaming toward the next town, the cancer “journey” chugs along. I sought Surgeon #2’s expert opinion on the next phase of this “journey.” After The Big Dig and subsequent revisions to perfect what is essentially an imperfect canvas, I needed to hear her say “do this” or “don’t do that.” I needed to know whether there’s any point to pursuing yet another tweak to my restored chest.
Surgeon #2 was her usual cheery, to-the-point self. She says I’m “almost there” in the relentless pursuit of normalcy — at least on the physical side — after breast cancer and reconstruction. That’s the tactful way of saying “We can do a little more, but it’s never going to be perfect so we’re getting close to the time in which you start to accept it.”
I don’t want to accept it.
I’m still hanging onto the myth — albeit cruel and deceptive — that one can have nice boobs again after cancer. Public Service Announcement #852 from this little blog: If you hear someone say, “Bummer about the breast cancer, but at least you get new boobs,” be aware: the new boobs may not be something you actually want.
I’m still not ready to accept that ugly truth.
Surgeon #2 concluded my consultation with a little look-see at an 8 1/2 x 11 inch photo of myself pre-reconstruction. I don’t remember posing for that picture, as there have been several photo shoots associated with this cancer “journey,” but there it was, on the inside cover of my file. Surgeon #2 flashed that full-sized photo of me, with one tidy mastectomy scar on the left and one not-so-tidy scar on the right. The right side, a mess of multiple scars and tissue excisions necessitated by the nosocomial infection. I hadn’t seen or thought about that scene in many moons. I recognized the train wreck on what was formerly known as my right breast. I recognized the God-awful blue paper panties required for plastic surgery photos. I recognized my former belly button, so normal and non-Frankenstein-looking. I recognized the flabby belly that I was required to acquire so that the DIEP surgery — my only reconstruction option — could occur. That belly was flabby, but it was unblemished and absent was the 17-inch incision from hip to hip that has mellowed but will forever be a stark reminder of what the king’s horses and the king’s men did in an effort to put Humpty Dumpty back together again.
While I hadn’t seen that photo in nearly two years, I recognized every aspect of it. However, when Surgeon #2 said, “You’ve been to hell and back,” I couldn’t conjure up the specifics I expected to feel about that dark period in my cancer history. In fact, hearing her say “You’ve been to hell and back” was startling. I didn’t expect it. I didn’t know how to react to it. And days later, I still don’t know how to react to it.
I suppose I should have felt some pride and/or satisfaction at having endured that trip down the “If anything can go wrong, it will” scenario. Perhaps I should have felt a sense of accomplishment at having survived that arduous trip down the rabbit hole. I guess I should have felt happiness at having come out on the other side of such a hellish situation. But I didn’t.
Instead, I felt as if I were watching myself in a movie. I remember being there, of course, and I remember that all that happened to me. But I can’t conjure up the specific feel of the experience. I can’t visualize the ins and outs of that particular “journey.” I see myself, my physical body, in that full-size, color photo (which is not at all flattering, by the way), but it doesn’t seem like me. I see that former body through a myopic lens. The rational side of my brain knows it did indeed happen to me, but the protective side of my brain has shielded me from calling it up, in all its ugliness. Like the flash of lightning in the night sky of a summer storm, or the sharp but fleeting heat of a jalapeno pepper on the tongue, I know it’s there but once it’s gone it’s gone. For that I should be grateful.
But I’m not grateful.
I’m sad.
Really sad.
And really mad.
Maybe it’s too soon to feel triumph over the wily infection that wreaked untold havoc on my weary body. Perhaps the time is not right to celebrate how far I’ve come. Maybe I’m simply not one to say, “That was rough, but I got through it.” Apparently it’s a long way from beginning to end, if there ever is an end, and I’m not there yet. While it’s been almost exactly two years since I bid adieu to my cancer-riddled breasts, that’s not enough time to process the enormity of all that’s transpired over the last 728 days. If it were a linear path from diagnosis to mastectomy to psychological recovery, I might be in a position to expect some change, some healing, some progress to have occurred. But I was busy processing that nasty infection instead of dealing with the weight of cancer at age 40, so the change, the healing, the progress remains at a standstill.
The big top remains.
google.com
The Phantom Tollbooth
Posted: March 27, 2012 Filed under: breast cancer, cancer fatigue, literature | Tags: Chuck Jones, longterm antibiotics, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, the Big Dig 6 CommentsRemember that book from back in the day? It was also made into an animated movie by Chuck Jones, the genius of cartooning. It was written before I was born, by Norton Juster and was illustrated by Jules Feiffer. Not sure what either of them has gone on to do, but perhaps the Tollbooth was enough.
thenewyorker.com
It’s the story of a boy named Milo who unexpectedly receives a magic tollbooth, which he explores in a toy car. Along the way he becomes lost in the Doldrums, where thinking and laughing are strictly prohibited, and is rescued by Tock, a lovely giant watchdog with an alarm clock attached to his belly. The parallels between this story and the cancer “journey” are many.
I was thinking of The Phantom Tollbooth yesterday as I noticed a phantom pain deep in the area formerly known as my right breast, where the evil post-mastectomy infection set up camp and decided to stay awhile. The pain itself wasn’t strong enough to take my breath away, but the implications were, and my mind immediately began racing: what if the infection is back? what if it never fully went away? There were signs of that damned infection, after all, during The Big Dig, which was 9 months after the infection first made itself known.
It’s been a year since The Big Dig, which was my best option for defense against the infection after 267 days of oral antibiotics didn’t fully slay that beast. Nearly a year later, a random pain in the area of my body that was my Ground Zero still has the power to bring me to my knees. Not because it hurts so badly, but because of what it represents.
The idea of the infection once again rearing its ugly head scares me. A lot. I don’t think about it often because I’m busy living my life, but once in a while, as in the case with the phantom pain, the thought does cross my mind. If it did come back, or if it reasserted itself after lying dormant, I would freak out. And yes, that is the correct medical term for becoming reacquainted with the mycobacterium that made a cancer diagnosis at age 40 seem like a walk in the park. The cancer part was easy (relatively speaking) but the myco damn near destroyed me.
Looking back on that dark period of my life is like watching a movie. I see this girl who’s going about her charmed life. Sure there are things that could be better but for the most part it was indeed a charmed life. She lives this charmed life rather out loud, and does “all the right things” to ensure that the charmed life has plenty of staying power. Baseline mammograms at age 36 because of her sweet mama’s premature death; a meat-free, plant-based diet free from preservatives and other nasty; daily exercise; a premium placed on a good night’s sleep; plentiful fresh air and clean water; an all-out avoidance of hormone-filled dairy products for her and meat products for her kids; a plan to deal with the stresses that sometimes darkened her door.
This girl was the last person you might expect to be felled by cancer. And yet, she was.
It’s hard for me to recall those dark days. Of course I know it happened and I was there, but my brain seems to protect me from all the gritty details. After taking in the diagnosis, deciding on the bilateral mastectomy, enduring the surgery and thinking I was on the road to recovery, the infection hit and knocked the wind right out of me.
There’s a vivid PTSD associated with the whole infection thing. I’d bet there’s a whole separate PTSD associated with the cancer thing, too, and it comes out in strange ways, such as a phantom pain sending me straight from normalcy to crazy town without stopping to collect my $200. Could be that the phantom pain in my chest was from 4 sets of tennis on Sunday after a tough upper-body workout on Friday. Or it could be from the wear & tear of multiple tissue excisions and general gutting of the infected skin during the infection’s salad days. When I was a kid, I had pneumonia, and some part of the illness settled in my left lung. For years after that illness, I’d often feel a pain/fatigue in that same spot. Perhaps the phantom pain in my chest is similar.
Very likely it’s nothing to worry about, but once you’ve danced with the devil that is cancer, any twinge or spot or pain sets you on high alert. Some of us head straight for the catastrophic death spiral my sweet friend Lauren writes about. As she so knowingly puts it “The catastrophic death spiral makes us think a lump in our thigh is thigh cancer, a headache is brain cancer, and shortness of breath after running is surely announcing lung cancer. The catastrophic death spiral is the vortex that is cancer.” My recent phantom pain sent me spiraling before I had a chance to reel myself back in to the land of rational thought. It’s worrisome enough to have already dealt with the havoc that cancer brings, but to also feel the aftershocks of that disaster just stinks.
I expect that the constant looking over my shoulder is common in cancerland. But I don’t like it. I’m rather known for my heightened sense of justice and the idea that if you do the hard work/right thing, you’ll get the payout. But bad things happen to good people every day, and life isn’t fair. People who take good care of themselves get cancer, and people who treat their bodies to a buffet of Animal House-style debauchery outlive them. I know this, yet I’m still brought up short by the phantom pain’s effect on me and how quickly and effortlessly I returned to the catastrophic death spiral.
I was probably foolish to think that there would be an end to the cancer “journey” and that the incidences that trigger PTSD would gradually disappear. I should have known that even after logging many miles and paying the requisite tolls in this “journey,” I would forever be circling, just shy of my destination, and always consulting the map. Once Milo returns home from his trip on the tollbooth, he sees a note, which reads, “FOR MILO, WHO NOW KNOWS THE WAY.” I’m looking for my note and wishing I knew the way.
Phantom Tollbooth's Map of Lands Beyond
The Thanksgiving list
Posted: November 24, 2011 Filed under: breast cancer, food, kids, pets, tennis | Tags: baseball, champagne, dogs, family, Jacoby Ellsbury, post-mastectomy infection, postaday2011, Red Sox, Salisbury Beach, thankful 9 Comments
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.
I’m contemplative on this day of everything good in my life. Not gonna think about the bad stuff today. Here’s a short list of the things I’m grateful on this day of Thanksgiving.
My family. And the beach. Two of my favorite things at the same time — good stuff!
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.
My kids. Every parent thinks their kids are amazing and wonderful and I am no different. 
As the grow I see more and more the people they are becoming, and that will always be a source of pride for me.
Youth sports. Being a part of a team, and experiencing the thrill of victory as well as the agony of defeat is a wonderful thing. 
Raising kids who love animals. Whether furry or slimy, cute or with a face only a mother could love, my kids adore animals and have learned compassion and sacrifice through caring for them. 
Good books. I love a good read. And I love that my kids are readers, too. My sweet mama the former English teacher would be so proud!
Natural beauty. Whether the rolling waves of Salisbury Beach, the mountains of Utah, or the public gardens in Boston, I’m grateful to have beautiful scenery to gaze at as I go about my days. 
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. 
Funny art and snarky humor. I hope I never outgrow my enjoyment of them. If I’m ever too old to laugh at something like what you see here, smother me with a pillow. 
Jacoby Ellsbury. Because he’s so fine. Oh, and baseball, too. I’m thankful for baseball. But mainly Jacoby. 
A legacy. The women in my family are strong and funny and kind-hearted. I hope to continue the traditions they’ve established. 
Mentors for my kids. I’m so grateful for the people in my kids’ lives who teach them, guide them, and love them.
Cocktails. Need I say more?
Great food. To soak up the alcohol.
Puppies! The more the merrier! Sometimes I think I like dogs more than people. Puppies especially.
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!
Friends. Couldn’t have made it through the last 18 months without them. Whether buds from way back or newly connected, I’m imminently thankful for my friends. 
Cheers to Thanksgiving!
Pink party!
Posted: October 8, 2011 Filed under: breast cancer | Tags: cancer battle, champagne, mycobacterium, pink party, post-mastectomy infection, postaday2011, psychological effects of breast cancer, survivor 8 CommentsThe only thing missing from this party was my cancer.
HA!
It was a great party (especially since the cancer — and its nasty friend mycobacterium — were nowhere to be found). Last year I had one foot in the grave and had a very small party to thank my friends who’d helped me in ways large and small through the most difficult experience I’d endured. The ways in which they helped were as varied as they are: a math teacher, a PE teacher, a realtor, a crude oil buyer, a builder’s sales & marketing guru, a former hair stylist, a psychotherapist, a transplant nurse, a budding photographer, an HVAC business owner, a surgeon-wrangler, and several kick-ass SAHMs.
1st annual Pink Party! girls
This year, the infection is gone, the antibiotics are history, and the party is on, baby! The rules were the same this year: wear pink, eat, and drink. And celebrate life. Really celebrate life.
Last year, I felt pretty rotten, and wasn’t much in a party mood. It had been a long, miserable summer, and the misery dragged into the fall (or what passes for fall in south Texas). Who would have thought that facing cancer and having a bilateral mastectomy would be the “easy” part compared to the post-surgery infection? Now I know that the battlefield is treacherous, and the presence and comfort of good friends go a long way.
Things were certainly much brighter this year.
I’d had a bad week, though, leading up to this year’s Pink Party. A really bad week. The last few days were emotionally charged, big time. Drama on the tennis court, histrionics from a stranger blogger, and mean girls at play in my social circle sucked up more time and energy than I realized. Factor in an early-dismissal day from school on Thursday, and this party girl was running behind schedule.
Frazzled and scrambling (and more than a little pissed off at all the drama), I got my party prep done by the skin of my teeth. 
A custom piece of artwork rolled out the pink carpet for my guests (thanks, David!).
The well-dressed flamingo started happy hour before the guests donned my door. 
Some pink bling for the front door, and the entrance is all set. 
Don’t forget to read the plant tag!
Having a party gave me the motivation I needed to revive my sagging, heat-stroked flowerpots, too. We need some mulch, but there was no time for that. Get the plants in the pots and move on. The ladies will be here soon! I’m oh so grateful to my superstar gardener. Thank you, Eduardo!
Flowers on the outside, flowers on the inside.
Pink gerbera daisies and blush baby carnations on the kitchen table…
…and pink roses on the side table. Halloween decor mingled with all things pink is kinda weird, but the eyeball candle reminded me of the mycobacterium that disrupted my life so mightily and completely last year, and it provided a nice dose of reality to my pink plans.
Macy added the chalkboard sign…
…and Christy provided the other sign. Love it!
True, so true! Pink’s not about Komen at my house, it’s about the party!
Once the feather boa goes up on the chandelier, it’s time to start the party!
And a close-up of the Hope angle floating just under the boa.
Her message was echoed by the sign on top of the fridge.
Another boas and some sparkly butterflies over the kitchen table.
The paper lanterns were new this year. Next year, we’ll light them.
I’m just sick that I didn’t take any pictures of the food this year. Once my girls started arriving and the drinks started flowing, I completely forgot. Let’s rewind to last year’s food and pretend. 
The menu was pretty similar this year: mostly pink foods. Salad with roasted beets, peel & eat shrimp, smoked salmon with capers, hot crab dip, strawberries & raspberries, and pink-ribbon sugar cookies with pink frosting. Oh, and the Corn Thing. Can’t have a party without the Corn Thing. It’s not pink, but it’s on the menu anyway. 
The corn thing (in the mostly empty dish) is always the first thing to go.
The other thing I completely forgot to do this year was give a toast. I wrote a few words about each party guest and had planned to tap my glass to shush the scintillating conversations and deliver the toast. Completely forgot.
Could this have had something to do with it?
Maybe.
A little.
We had a most excellent bartender.
Ok, girls, here ya go:
Amy H: you have led by example and taught me how to give from the heart, and to give what people truly need. You always seem to know just the right thing to say, like the dog whisperer, only for people. No one can wrangle Dr S like you!
Amy P: the abundance of food you delivered to my doorstep sustained both my body and my soul. Knowing that a good meal was right around the corner was such a relief, and it allowed my addled brain to focus on things like wounds and puss. Your nursing expertise was a huge help as well, and I’m grateful for the late-night house calls.
Christy: you went from “my babysitter’s mom” to “my friend” in one giant leap. You walk the walk and are the epitome of “it’s just what you do” and are the one person who cusses as much as I do. I appreciate so much your unflinching honesty and your endless compassion, to people and animals. My life is so much better with you in it.
Claudine: Through your diagnosis, I have come to understand the overwhelming desire to try and ease the patient’s burden. I’m honored to be in the trenches with you.
Jenny: you’re the trail-blazer and my mentor in all things survivor. You lifted me up each time you sent me a card and each time you reminded me that “this is temporary.” You have provided a stellar example of how to live a rich and full life after cancer. Can’t wait to be celebrating my 12 years of survivorship, like you, my friend! And many more.
Jill: you have a knack for making all the right gestures and for making all the right things happen. Whether sharing a meal or raising a glass, time spent with you is always a rich reward.
Julie: my wacky friend, I love knowing that no joke is too raunchy, no comment too catty to utter in front of you. What freedom to be exactly who I am — the good, bad and the ugly — with you and know that you love me just for being Nancy K.
Laura: no one else can talk me into giving up so many hugs. Each time you took time out of your insanely busy schedule to check on me, I was reminded of what a loyal and special friend you are. And a special thanks for all the electronic medical advice you provide…whether via text or email, I know you’ll send me the right answer.
Mary: you make it seem so simple to give freely and unconditionally, and every time I’ve asked you for something, you’ve not only said yes, but you’ve agreed with a huge heart. To know that you have my back, whether for carpool or child-care, is such a comfort.
Melanie: you reached out and seized upon my hair emergency. Offering to take care of my hair at home while I was healing is something I’ll never forget. By figuring out exactly what I needed, you taught me that accepting help from others isn’t just ok, it’s pretty great and mutually beneficial.
Melissa: When we first met, when P and H were in kindergarten, I knew I wanted to be your friend. Your wit and style were (and still are) so appealing, and I enjoy every minute I spend with you. You’re a pretty kick-ass lizard-sitter, too!
Michelle: My champagne sister! What a beautiful thing to find someone who is always looking for a reason to pop that cork. Not only do I love drinking bubbly with you, I also really like to stand next to you. Dynamite truly does come in small packages, my friend.
Nicole: your carefree spirit reminds me how vital it is to enjoy life and to not sweat the small stuff. My type-A self basks in your laissez-faire attitude and I aspire to live life with gusto, just like you.
Sharon: your visits were always perfectly timed: just when I needed a pick-me-up, you would appear on my doorstep. I’ve learned a lot from you, in Chinatown and on the tennis court.
Staci: from Day 1, you kept me grounded. I knew that if I needed to go off the rails, you’d get me back on track and charm everyone we met along the way. You taught me how to grease the wheels and to take time to talk, really talk, to the people who come into our lives. And somehow, all these years later, you & I always have something to talk about.
Yvonne: as my in-house counsel, you remind me regularly that it’s ok to feel what I feel and think what I think. You bring a calming presence to my calamitous life, and your good sense and fun-loving ways always make me smile. Just when I am feeling adrift, you call saying “I miss you!” and that makes my heart happy.
I’m already looking forward to the 3rd annual Pink Party, and I’m smiling really big at the idea of us still gathering every year in October when we’re old and grey. Hopefully by then, breast cancer will be a thing of the past — but the party will go on!
It’s not a gift, people
Posted: September 28, 2011 Filed under: breast cancer | Tags: celebrities with breast cancer, Kelly Dempsey, Melissa Etheridge, mycobacterium fortuitum, post-mastectomy infection, psychological effects of breast cancer, what to say to cancer patient, young women with breast cancer 13 CommentsI ran into a woman at the gym who I hadn’t seen in a while. She didn’t know about my little bout with breast cancer, and when she asked what I’ve been up to, I told her. I told her the truth, that it was a simple cancer that was caught early and is highly treatable. The cancer was pretty simple, but the post-mastectomy infection was very complicated. I’m still dealing with the mess from that damned infection.
She asked a lot of questions, trotting out the usual suspects. I don’t mind the questions, and I don’t begrudge her curiosity. Here’s how the conversation went down: How did you know you had cancer? I didn’t. At my annual well-woman exam my OB-GYN found a lump that I never felt, even when she put my hand right on it. Why didn’t you do a lumpectomy instead of a mastectomy? Because I wanted to slash & burn each and every cancer cell in the area. Do you regret having chosen such a drastic surgery? Nope, not one bit. Turns out there was cancer in the other breast, that didn’t show up in any of the pre-surgery testing. Do you have a family history of breast cancer? Not so much. My cousin Cheryl had it nearly 20 years ago, but my mom and her sister both died of different cancers. How old was your mom when she died? 67. Way too young, and not a day goes by that my heart doesn’t ache — some days physically but mostly it’s mental — from missing her, and while the grief certainly isn’t as raw after nearly 6 years, I don’t think I’ll ever stop missing her. How did you hide it from your kids? I didn’t try to but instead explained everything and reassured them that my cancer wasn’t going to kill me like YaYa’s killed her.
It was a perfectly normal conversation — well, perfectly normal now that I’m among the 1 in 8 women who will contract this damned disease — and then she said it: the one thing that sets my teeth on edge, that makes me feel like steam is coming out of my ears, that makes me have to work really, really hard not to punch someone in the brain.
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She said, “It sounds like it’s been hard, but it’s so good to see you working hard in the gym. What a gift you’ve been given. Aren’t you so lucky to be so young and strong, and to have come out of this so well?”
I was speechless. I probably looked like a fish on a hook, mouth opening and closing, wondering what the hell just happened.
Of course I realize she was trying to say the right thing, and in all likelihood was even trying to compliment me with the “OMG, you look so healthy for someone who’s battled cancer” business. I know it’s a sticky situation, people, and that it’s hard to find the right thing to say. But really, is it that difficult?
I’m the absolute last person to look at a cancer diagnosis as a gift. It’s not. It’s a diagnosis of a terrible, terrifying disease. If you think cancer is a gift, kindly remove me from your list of people for whom you shop. I’m out. Yes, good things can come from a bad situation: new friendships blossom, existing relationships are strengthened, the depths of one’s character are carefully examined, yadda yadda. But at the end of the day, if someone tells me I’m better off for having had cancer, I call bullshit.
I recently read an interview with Melissa Etheridge about her breast cancer. She joined the pink ribbon club in October 2004, and has been quite outspoken about her “cancer journey.” I like Melissa Etheridge. I like her blatant feminism and her moxie. She displayed some rockin courage when she performed, bald, at the Grammys shortly after being diagnosed.
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Things like her bald performance are very good for cancer patients, no doubt. Her decision to not wear a wig forces people to see the harsher sides of cancer, and I applaud her courage in putting herself out there, even if seeing her bald head makes some people uncomfortable. Especially if seeing her bald head makes some people uncomfortable.
But she also talks about cancer about something for which she’s grateful. I guess that takes courage, too, but I have a problem with it. She says that when someone tells her they’ve been diagnosed with cancer, her reply is “Wow, great! Your body is telling you that you can’t go on like this and you have to change. You’ll look back on your disease and say ‘I’m glad that happened to me.’ ”
Well, guess what? There was precious little in my life that needed to change pre-cancer. I exercised 6 days a week, ate heathfully, drank lots of water, avoided toxins, and worked hard to have a balanced and healthy life. Cancer got me anyway. I certainly won’t look back on this — assuming it ever ends — and say I’m glad it happened to me. Uh uh. No sir. No way. I can’t imagine looking back on this and saying I’m glad it happened. That its was a gift. Not in a million years.
Listen, Melissa: someone who’s newly diagnosed — and most likely terrified, freaked out, and shocked — does not need to hear someone essentially say, “Oops, I guess you’ve been doing it all wrong and this is your fault.” I don’t care if you are a celebrity and a Grammy winner. Zip it. No one needs to hear that. And no one needs to hear that cancer is a gift, either.
Sheesh. I’m not even going to get into the whole mess of it’s easy for her to say that, she’s a star and has plenty of money/time/resources/help/clout. That’s a post for another day (even though it’s true). Let’s stick to the idea of how wrong it is to imply that the person with cancer is somehow at fault, that he/she did something or didn’t do something that caused their cells to go wonky and create a shitstorm in their body. Wrong, wrong, wrong.
I will never forget my sweet breast surgeon Dr Dempsey looking me in the eye while holding both my hands and saying, “This is not your fault. You did not cause this cancer.” 
Here’s that part of the notes that Boss Lady took for me that day (doesn’t she have nice handwriting?). I’m not a touchy-feely person at all, but Dr Dempsey is, and she did me a huge favor that day by looking me in the eye and telling me that this is not my fault. I’m all for accepting responsibility, but not here, not when it comes to cancer. It’s not my fault, I’m not glad it happened to me, and it’s not a gift.
I’m expecting a big fat “rejected!” notice
Posted: September 21, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer diagnosis, life after breast cancer, life insurance and cancer, mastectomy, post-mastectomy infection, psychological effects of breast cancer, young women with breast cancer 9 Comments
Trevor is trying to get life insurance on me. I’m sure that should make me nervous on some level; however, I think he knows that even on my worst day, his life is a bit easier with me in it. Right?? Right??
Here’s what’s funny: I had to fill out a bunch of online forms, knowing I don’t have a snowball’s chance in hell of being accepted. It’s ok, I have really thick skin. I don’t worry too much about rejection.
The online application has a big section on heath issues, conveniently divided up into categories: physical exam; common conditions; skin, hair & nails; musculoskeletal; women’s health; and “other.”
I’m sure I would pass the physical exam, as long as they give partial credit for having partially finalized body parts. The common conditions section included questions on whether one has had problems with things like colds, flu, allergies, as well as kidney stones and appendicitis. Since when did the latter two become common? I hope I never have either.
The skin, hair & nails section sadly had nothing to do with how fastidiously or fashionably maintained one is. I would pass with flying colors on exfoliated, moisturized, and sunblocked skin, as well as highlighted hair and a nice mani-pedi. But no, they want to know about boring stuff like shingles and psoriasis.
Musculoskeltal was a little more interesting with queries about back pain, bone spurs, fractures, and plantar fasciitis. No, yes, yes, and yes. That was easy.
Women’s health dealt with exactly what I’d expect: birth control, menopause, hormone replacement therapy. In other words, some of the most depressing topics on the website. No need for birth control when you’ve been thrown into early menopause. The baby-making department has not only been downsized but is out of business and closed for good. Menopause? Yep, in spades. Every symptom under the ‘pause banner got a big, thick checkmark from me. Hormone replacement therapy? No chance. The damn hormones fed my cancer machine, so there’s no way I’m going to replace them. Not even if they begged me to come back. 
The “other” section inquired about a smorgasboard of topics: concussions, cycts, hernias, and plastic surgery. Hmmm, seems strange to throw the plastic surgery one in there. I can’t wait to tell Dr S that his exalted specialty is lumped in with such ordinary things. 
After checking the boxes and reading the laundry list of symptoms and conditions, I had to give specific detail about any “health concerns.” This is where I’m expecting the giant red “rejection” stamp to hit. The questions:
“#1. During the past three years, have you for any reason consulted a physician(s) or other health care provider(s), or been hospitalized? #2. Have you ever had, or been treated for, any of the following: heart, lung, kidney, liver, nervous system, or mental disorder; high blood pressure; stroke; diabetes; cancer or tumor; drug or alcohol abuse including addiction?”
No amount of creative writing or playing fast & loose with the facts is going to help me here. During the past three years, I have indeed consulted a physician(s) or other health care provider(s) and been hospitalized. Further, I have indeed been treated for cancer or tumor; the jury is still out on the mental disorder and the drug/alcohol abuse issues. I’m thinking those could go either way. 
Footloose and fever-free (mostly)
Posted: September 1, 2011 Filed under: breast cancer, tennis | Tags: breast cancer, cancer battle, cancer diagnosis, DIEP, John Newcombe, Kim Clijsters, Newk's Tennis Ranch, post-mastectomy infection 4 CommentsAs I predicted yesterday, my favorite doctor and all-around funny guy Dr S did indeed shake his head at me when I reported that I was fever-free until evening time. He shook his head, just as I expected, and said if you had a fever — even one that didn’t come until evening time — you were not fever-free. I said yeah, yeah, yeah, I’m claiming it. It counts. Even if I’m the only one who thinks so, for the record I was fever-free. So there.
He probably would have argued with me if I were still feeling like something scraped off the bottom of someone’s shoe and if the redness/soreness/streakiness/swelling hadn’t tapered off considerably. I still look like I’ve been beaten mercilessly by a very large stick after last week’s surgery, but I feel a lot better. Yesterday followed the same pattern as the day before, with me being fever-free until the end of the day. Last night the fever came on even later than the day before, and I expect this means it’s pulling off a long, protracted, and overly dramatic good-bye. That’s my official medical opinion; don’t try to talk me out of this idea or change my mind. I’m operating under the assumption that my body is working it all out, and that a slight fever at the tail-end of the day is emblematic of the trauma my body endured last week and not indicative of anything infection-related.
My visit to Dr S was quite pleasant, and as usual, we scuffled a bit over a few points. The main scuffle is an ongoing one in which the good doctor claims that before The Big Dig, i.e., my DIEP surgery for reconstruction, I did not have a waist. This has always struck me as seriously funny because one thing I’ve always had, maybe even from birth, is a waist. I was curvy before it was cool. Way before J-Lo, Beyonce, and Kim Kardashian, I had a waist and a round butt, and I’ve never had skinny legs. Not that I’m a tub-o, but I’ve always had meat on my bones and muscle. I learned long ago that certain fashion trends were not for me, and I’ve lived 42 years without ever wearing a pair of skinny jeans, quite happily I might add.
So it’s always struck me as funny that my favorite surgeon said that in the course of restructuring my body during The Big Dig that he “gave me” a waist. Of course I wasted no time in correcting him, and we’ve gone round and round about this issue ever since.
That's me in the red, w my runnin' buddy, pre-cancer
I reminded him that unlike a lot of his patients, I was pretty happy with my body before cancer invaded and necessitated surgeries that would change so many aspects of my physical self. I’ve always been physically active, and can truly say I’m one of those weirdos who likes to work out. Every time we watch the Biggest Loser, I get a little envious about the contestants being able to spend hours in the gym every day. I know, weird, huh?
As much as I enjoy working out, I love, love, love to play tennis. Back in the day, pre-cancer, my favorite day was Monday because I would have a tennis lesson, then work out, then go to a tennis drill. I’d stop for a snack in between the lesson and the gym, and change clothes then have lunch before drill, then happily collapse in a heap. Super weird, right? Some of my happiest days ever were spent at Newk’s tennis camp, where we played tennis for 16 hours over the course of a too-short weekend. If you’re a tennis player but have never heard of Newk’s, get online now and make a reservation. It will be one of the best weekends of your life.
gearing up for all day on the courts
Carianne, Rebecca, Sharon, Staci, Melanie and I played hard and had a blast. We fully embraced the camp philosophy of “Eat, sleep, and breathe tennis,” and we found it true that while at Newk’s, you have “No worries, mate!”
Kim, Staci, Sharon and I were so thrilled to meet John Newcombe himself. What a kick to be at camp with him, visit with him, and watch him in action — yes, he still plays like a pro. He’s a stand-up guy who entertained us with his tennis tales and inspired us to become “rock solid.” They say his moustache is insured for $13 million, and I believe it! My favorite thing he said about his longevity in the tennis world: “I’m basically living the same, I just curtailed the stupidity.” I’d say anyone who chooses to build a first-rate tennis academy in the Texas Hill Country has indeed curtailed the stupidity. The scenery surrounding Newk’s place is gorgeous, the pros are fun and knowledgeable, and the weekend camps are the best!
Directors Chris & Sal and the other pros earned their money the weekends we visited. We played hard, sassed them, and tried to drink them under the table. They’ve got youth on their side, though, and all-day tennis while hungover would bother me more than it would them. Team Mexico and Team Australia entertained us royally, and we will be back for another hard-core weekend soon. Planning to return to Newk’s has kept me going during this long, drawn-out, and unpleasant recovery from the dreaded disease and the even-worse infection.
That’s part of why this idea of me not having a waist has been so funny. I have indeed always had one, and to settle the issue once and for all, I went to my appointment yesterday loaded with physical evidence.
Photos. Lots of photos. 
Starting way back, you can see a waist. The photo is old and the quality isn’t great, but by golly there’s a waist. 
Then there’s the wedding dress. Again, the photo is old — coming up on 19 years — but even in all-white, the least-flattering color for full-body shots, I see a waist. I also see a very sweet look on my mama’s face, and remembering her in that sparkly pink dress brings a bittersweet smile to my face. 
This green dress was my favorite piece of my work wardrobe. I still have it, and might just try to squeeze into it for my next appointment with Dr S. Part of what I loved about it was that it wrapped around the front and buttoned at the waist. Yes, at the waist!
Like a lot of women, I found myself a bit bigger after childbirth, but looky here — I’m a mom, and I have…a waist!
My final piece of evidence was this photo of Yvonne and me at our Cooking Club Christmas party before I was diagnosed in April. Our Cooking Club goes all-out for the Christmas party, and since it’s the only time all year we invite the men, sometimes it gets pretty wild. Thankfully this photo was taken before the wild rumpus began, and again, I see…a waist!
After scrutinizing my photo evidence with his highly trained eye, Dr S had a few things to say. First, the cheerleader photo was from too far back in history. Second, that I looked very young in my wedding photo (compared to the ravaged old hag I am now, I guess), and when I told him I’ve been married 18 years he asked, “To the same person?” I know, I know, Trevor deserves a medal. Third, he said Yvonne is so pretty. On that point, the good doctor and I agree (xo, my friend!).
So the long story short, after examining my evidence, Dr S concluded that he never said I didn’t have a waist, but that he “enhanced it.” Like a lot of skirmishes, one must choose whether it’s a battle worth fighting. I unloaded my ammo in this skirmish, proved to my favorite surgeon that my waist pre-dated him, and smiled in satisfaction. I will admit that I enjoy these little scuffles with Dr S. He’s a worthy opponent in the stubbornness department, but I think he bests me in the “dogged determination to prove you’re right arena.” I’ve got him in the “who can hold a grudge longer” contest, though. We’ve gone toe-to-toe more than once, and I suspect that trend will continue.
My latest scuffle with the good doctor reminds me of my favorite quote by Kim Clijsters, one of my tennis role models. The reigning champ of the US Open and the Australian Open was the first mom to win a major title since Evonne Goolagong did it in 1980. (If you thought Evonne won a title for strangest last name in tennis, you would be wrong.)
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Kim is a scrappy, smart player who gives it all on the court. Her “split shots” wow me every time.
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She talks of how losing motivates her more than winning does. She seems to like the battle as much as the result, and believes that “it’s the imperfect matches that make you great.” I think so too. But that’s not my favorite quote of hers; it’s this:
“It’s nice to win 6-1, 6-0 but there’s nothing better than when it’s 5-all in the third set and nobody knows who will prevail.”
Fever-free, finally?
Posted: August 31, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: Houston medical center, infectious disease, long-term antibiotics, Maria Pace-Wynters, post-mastectomy infection, psychological effects of breast cancer 7 CommentsYesterday was the first day since my surgery–exactly one week ago–that I didn’t have a fever for most of the day. I wasn’t exactly fever-free, as my temp peaked at bedtime, but that’s the best it’s been for one very long week, so I’m claiming it. After coming this close to needing IV antibiotics — again — I’m beyond thrilled to have been (mostly) fever-free yesterday. I’m guessing that the docs in my life would laugh a little, shake their heads, and maybe massage their temples a bit at me claiming yesterday as fever-free. I’m guessing my friends in the white coats would consider my being almost fever-free akin to being a little bit pregnant–it’s an all-or-nothing condition. That’s fine. They can chuckle and shake their heads at me, I’m still claiming it as a victory.
See, fever can indicate infection, and after my surgery last week, the fear of recurrent or new infection abounded. That fear was thick in the OR and it was pervasive in the days after surgery as we waited to see what would happen. It’s still lingering, in the back of my mind and on the fringes of my daily activities. I’m not a big fan of that loss of control. We did increase my course of oral antibiotics — both in duration of course and milligrams per dose. The usual suspects in the roster of awful side effects are back, but that tells me the abx are working. If there was a niggling infection trying to re-establish itself, the mounds of abx I’ve been taking for the last 7 days have contained it. I’m almost afraid to say this out loud, but I think I’m out of the woods.
Can it be? Like the joyous girl in the gorgeous Maria Pace-Wynters art, coincidentally titled “Out of the Woods,” I want to smile big and enjoy the view of the woods from the other side. I want to feel the relief that washes over me as I realize that the 6-day fever has broken, the pain & redness & swelling in the original infection site have abated, and I may be able to breathe easily now.
My infection-induced PTSD makes me wonder if I really can believe that the tide is turning, that I may be out of the woods. It’s been a long, long haul. A super-long haul. Reflecting back on the havoc that the post-mastectomy infection has wrought makes me very uncomfortable. I’m not yet in that happy place, and the calamity is not far enough in the rear-view mirror yet. Instead of feeling enormous pride, accomplishment, gratitude and general kick-ass-itude that it’s over, I’m gun-shy and untrusting.
This time last year, I was fresh out of the hospital, having just served day 27 of intermittent, back & forth hospital stays and at-home IV antibiotics. The last hospital stay to treat the infection was at Methodist in the Med Center, so I’d served time in 3 different hospitals–Memorial Hermann Southwest, Methodist Sugar Land, and Methodist Med Center–which allowed me to sample Houston’s best. I recall the direct-admit to the Med Center for the last stay, late on a Sunday night just before school started. Sweet Dr S had handled the details for me so I had a “fast pass” to get admitted quick, which allowed me to circumvent the circus that is a Med Center ER on a weekend night. Dr S and I were texting back & forth during the speedier-yet-still-complicated process so he would know that I was in the room before he had to get up and leave his family to come see me and get all of our ducks in a row.
I remember being furious about having to go back into the hospital. At that point last year, I’d been on antibiotics all summer, oral and IV, in every imaginable combination. Biaxin. Cipro. Minocycline. Zyvox. Vancomycin. Cefapim. Doxcycline. Bactrim.Vancanese. Levaquin. We were on the cusp of finding the magic bullets that would target the slow-growing and slow-to-kill infection (Bactrim & Minocycline), but it would take time to decimate the wily bacteria, so the infection still had the upper hand. As I settled into my room after navigating the maze that is Methodist Med Center, I was completely and utterly pissed at the ugly-ass artwork in my room. The shoddy impressionist landscape was hideous, the colors were barf-inducing, and the mere site of it reminded me that I was once again a prisoner — of my failing body and of yet another hospital. I couldn’t avoid that uproariously unpleasing “artwork” because it was in my face and I had nowhere to go to avoid it. That framed print became a symbol, a poster-child if you will, for all that had gone wrong last summer, and I was stuck staring at it. If I hadn’t been so ticked and so upset, I would have taken a picture of that “artwork,” and one day it will make me laugh instead of making me want to punch someone. But not yet.
Here’s what I wrote upon settling into that room; note the frustration surrounding the words that described the room but actually meant a whole lot more:
So I got through the masses in the ER pretty quickly and got into my room and thought, yuck, this place is a dump compared to my lovely one-bedroom suite at Methodist Sugar Land. Call me a snob, but I like those hardwood floors and new, unchipped paint. I don’t really need the laminated sign on the wall here reminding me not to leave my dentures on my lunch tray. The view out my dirty window is of a wall, with patient rooms too far away to spy into [one of my pastimes at Methodist Sugar Land]. The chair I’m sitting in to type this is vinyl, and there is a lovely faux-cherry-wood desk with ornate colonial drawer pulls. I could sit there, but the desk chair is super scratched with dingy upholstery on the seat cover. And don’t even get me started on the artwork on the wall across from the 20-year-old bed covered in ultra-scratchy sheets. No wonder people get sick in hospitals. It’s from the decor as much as the bacteria.
I was one unhappy girl.
I was coming to terms with the fact that the infection superseded the cancer in every way. For a while, that was a good thing — being so focused on the infection kept me from thinking about the fact that I was a 41-year-old mother of 2 young kids battling cancer. The cancer was easy compared to the infection. While a cancer diagnosis is one of the scariest things ever, the treatment for and eradication of that cancer was, for me, much more logical and linear than the infection. The cancer left me flat-chested, but once the tumors were removed and the lymph nodes declared clear, it was done. My game plan was defined: a 5-year course of Tamoxifen for adjuvant therapy along with hormone suppression to snuff the cancer’s fuel. The cancer battle was over and the treatment had begun, but the infection war hadn’t even revved up yet. Little did I know that more than a year later, I’d still be fighting that war, and that sometimes the infection would gain ground and force me to retreat.
The infection left me with a hole in my newly flat chest — literally. The excised tissue created a wound that measured 5.6 cm long and 3 cm wide. Grab yourself a ruler and feast your eyes on those dimensions. That bad boy took 8 weeks to heal, almost double the healing time required by my bilateral mastectomy. I’d faced my diagnosis, done my research, made the hard decisions, endured the systematic removal of both breasts, and was still standing. The infection, however, was a whole ‘nother ball game. There was no logic and nothing was linear — it was a guessing game. Educated guesses by a crack team of infectious disease docs, but a guessing game nonetheless. Will this combo of antibiotics work? How long will I need to stay on them? How will we know if they’re working? What are the side-effects of long-term abx therapy? Will I ever get my normal life back? The questions were many, the answers were few. I wrote this after one particularly frustrating day in the infection war:
All this talk you hear about being a pro-active patient, being your own advocate, researching and digging up as much info as you can and thinking for yourself — forget it. Today is one of those days that makes me wish I was a sheep. I just want to follow along and do what I was told. Except I can’t. It’s not how I’m made. So I continue to ask questions and solicit advice, all the while feeling like I don’t have all the puzzle pieces. Sometimes there are a few pieces missing, or you have to wait a while for them to fall into place. You can’t force it, although I want to. I am impatient and a forcer. An impatient forcer.
And I’m still waiting for the pieces to fall into place.
Meanwhile, I will feast my eyes on another gorgeous piece from Maria Pace-Wynters’s collection. This one is titled “Unseen Beauty,” and my eyes are open. 
The Pink Underbelly 