Today’s my day.
It’s been pointed out to me that in addition to being my birthday, today is the official start of hurricane season. Coincidences are funny.
Birthdays were a big deal in my house when I was a kid. There was lots of celebration, and we always had homemade cake, decorated by my sweet Aunt Margie, my mom’s younger sister, who was diabetic but still made her Nanny Po a fancy cake every year. See, when I was a little kid, I couldn’t say my whole name: Nancy Katapodis. That was a mouthful for a little girl. The best I could manage was Nanny Po. Aunt Margie always called me that, even after I’d grown up. Dadgummit if pancreatic cancer didn’t strike her down 14 years ago. If she were here, she’d be making me the Barbie bowl cake right now, with lots and lots of frosting, and calling me Nanny Po.
I don’t mind one bit that I’m growing older. Not one little bit. I might have B.C. (Before Cancer) but not now. There’s something so very sweet about coming out on the other side of a hellacious battle against a vicious beast and its equally nasty side-kick. Breast cancer and mycobacterium stole a lot from me, but they will not steal my birthday joy. Pre-B.C., I might have fretted about being on the wrong side of 40, about the crow’s feet and the less-than-smooth skin. But not anymore.
I’m planning to savor every second of my birthday. Growing older means I’m alive. I’m here to celebrate another year. I’m thrilled to bits to be 42 today.
I really hope that this year is better than last.
Not to tempt fate, but it can hardly be worse.
Once cancer came to call, I realized that each birthday is much more than the day of one’s birth; it’s another year of victory. It’s another year of walking upright as opposed to being tethered to a hospital bed. Triumphant and upright yet still scarred, I learned first-hand the Chinese proverb:
“The appearance of a disease is swift as an arrow; its disappearance slow like a thread.”
True, so true.
The utter suckiness of last year and the swiftly-appearing disease that is breast cancer, while totally sucky, taught me a lot. One of the big lessons, while completely corny, is to enjoy each day.
And today, on the day of my birth, I intend to do just that.
I don’t have a lot of baby pictures of myself. Those are still at my parents’ house; my mom kept a lot of pictures and a detailed baby book. Like everything else, she did the historical record-keeping of my life very well. In fact, I think most of my school pictures are hanging in the hallway at the old homestead.
I do have these pics, though, and will embarrass myself by sharing.
No idea whose parents owned the magical mystery bus that we decorated for cheer competition, but it was looking pretty festive. Oh, how I loved this particular cheer uniform. It was my favorite, and I hated to have to wear the other ones. I betcha it’s still in my parents’ attic. My mom never threw anything away. It may be moth-eaten and tattered, but I bet it’s still there.
I’m almost afraid to post any pics of my lovely self from college, because my bangs were so big they’d take up this whole screen. Go ahead and laugh. I’m right in the middle, surrounded by ’80s bangs.
After college, my first real job was editing Usborne children’s books that were written in England but sold in the U.S. My job was to “Americanize” the books, i.e., change “biscuit” to “cookie,” etc. To this day, I have a hard time deciding if the word “grey” is spelled with the “e” or an “a.” It looks more right to me as grey. Ditto “colour” vs “color.” It was a super fun job and when I had to leave, to move to Austin so Trevor could start grad school at the mighty University of Texas (HOOK ‘EM!!), my going-away party looked like this:
Randall White, the company president, and I cooked up a little show in which he pretended to insult me, and I shoved a piece of cake in his face. No one else was in on the joke, so it was a bit shocking. No wonder I have such a problem with authority, if Randall taught me these kinds of hi-jinks at my very first job.
Baby Payton got me out of the 9-to-5 lifestyle and into that of a full-time mommy. Keeping up with a hungry baby’s schedule and later chasing after a busy toddler made me wish I had an office to go to again, but only on some days.
Then I really wished I had an office to go to again!
Being responsible for the care & feeding — not to mention the character-molding — of two small kids was a big responsibility. Luckily, I had a great mentor. Just wish she’d have stuck around to help get me through my little darlings’ teenage years.
May not be all that important to them, but it’s my day, right?
Watching my boy pursue his true love (baseball) is pretty great. It reminds me a lot of my childhood, in which I spent a whole lot of time at the ball fields watching my brother and shagging fly balls. Sharing an unabashed love of the Red Sox with my boy is one of my life’s true joys.
The day Macy met Mo Willems stands out as one of the all-time best. He was so entertaining, and we love his books so much. When it was Macy’s turn to visit with him, she told him she likes to write, too. Instead of asking him some goofy question, she asked for his phone number. In parting, he told her be sure to not let Pigeon drive the bus. She replied: “As if!” I predict those two will collaborate one day.
Like my doggies. Maddy, sweet Maddy. My first dog as a grown-up. I saw her being born, and will never forget the shock of how easily the pups just slipped right out from their mama, the polar opposite of all the pushing, sweating & grunting I’d seen of births depicted on TV. Sweet Maddy entered the world easily and wormed her way into my heart. 6 pups were in her litter: 3 black, 2 blond, and 1 white. Everyone who came to look at those pups wanted the white one. But she was mine. I loved that dog all the way to the Moon and back. When she died just shy of her 15th birthday, my heart broke into a million little pieces.
She was the best dog, and a really good sport. I guarantee she didn’t want to wear bunny ears — she was much too smart & sophisticated for that — but because her girl asked it of her, she complied. Sweet old thing.
My dogs bring me a lot of happiness. A lot of dog hair, but happiness, too. Harry and Pedey make me smile every single day.
Later, of course, we learned it’s because he’s insane. They don’t always tell you that at the Humane Society.
As does spending time with my tennis girls. Oh, how I love that. If I weren’t planning to drink so much champagne today, I’d have to get out on the court. Going to tennis camp and playing nonstop for an entire weekend was one of the best things ever. I need a re-do! Come on, girls — get your racquets and let’s go.
It’s been a crazy year, for sure. When they say it’s all down hill after 40, they really mean it! Going from 40 to 41 brought more than the usual changes for me. But I’m on a roll now.
Being 41 and a fledgling cancer survivor taught me to strut my stuff, both at the Couture for the Cause and every day.
As I strut my way into 42, I’ll hold my head high and my glass even higher. This is indeed a year for celebration.
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.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
After 267 days, I finally heard the words I’ve been dreaming about: “We are discontinuing the antibiotics.”
Cue the hallelujah chorus.
I saw Dr Samo instead of Dr Grimes today, and he delivered the most-excellent news. He is my new best friend. All of the cultures run during The Big Dig came back negative, which means we can safely assume the post-mastectomy infection is gone. Yes, at long last, the mycobacterium has been vanquished.
Let me say that again: the infection is gone. I’m cured.
No more twice-daily dose of minocycline and bactrim. No more nausea. No more planning my consumption of food & drink around my doses. No more remembering to take my drugs. No more antibiotics.
Oh, happy day!
I’m still in a mild state of shock, or maybe just slightly buzzed. Could be the celebratory champagne straight away after returning from the medical center (duh), and the margarita at my tennis team’s end-of-season lunch.
We broke out the good stuff and gathered our close circle of friends who would never say “it’s too early” and question the wisdom of popping a cork at 11 a.m. To Amy, my chief medical correspondent and chauffeur to & from appointments: thank you. For everything. To Jill & Keith: thank you for rushing right over, then leaving as soon as the bubbly was gone. But for planning to come back with dinner.
The infection is gone. Ding dong, the witch is dead.
I half expected the citizens of Munchkin Land to come out and dance their little legs off and sing in their froggy voices to celebrate.
I admit, I’ve been wondering all week if my visit to the infectious disease doc today would result in the end of the abx. I was trying to not get my hopes up, and while I knew not to expect it, I would have been disappointed if they’d said keep on swallowing those pills. No matter. It’s all good now.
I will also admit that when the nurse was taking my BP and temp and asking me the reason for my visit, I felt funny saying “yes” to her question of “are you here to see if it’s time to get off of the antibiotics?” It was almost too much to hope for. Almost.
Then when Dr Samo uttered those glorious words of “We are discontinuing the antibiotics,” I was stunned. It was a bit surreal. Once I grasped what he’d said, my first thought was that “discontinuing” meant taking a break, not stopping them altogether.
It was almost too much to take in.
As my best buddy Ed said, “I feel I should shove you and yell ‘Get Out!’ like Elaine on Seinfeld.
“Get Out!” indeed.
The end of the antibiotics is like an end of an era. My life has revolved around them for so long now–one week shy of a year, in which I’ve been on some form of abx, whether oral or IV. Nearly a year on some pretty powerful drugs, and none of them the fun kind. Nope, these are the ones that tear up your stomach and make your insides cry like a baby.
But no more.
The fat lady can sign her heart out right now.
Y’all are in for a treat today. Sit down, grab a beverage, put your phone on vibrate for this, because you’ll want to read this uninterrupted. My friend David has created a marvelous original piece just for Underbelly readers. He’s enormously talented with the prose and the pen, and as if the story itself isn’t enough, the illustrations are fabulous. I think it’s terrific, and it’s a perfect recap of my cancer-versary, which I feel compelled to continue celebrating. I favor the total birthday week, so likewise I may have a cancer-versary festival for as many days as my liver can stand. IMHO, now is always the right time to pop open some bubbly (I like later, too).
Those of you who have followed my story over the last year, with all its ups & downs, will know of my special relationship with my plastic surgeon. He and I have really gotten to know each other well during my “cancer journey,” and while I tease him sometimes (and drive him crazy all of the time), I have enormous respect for him and his amazing craft. We have a closer-than-normal bond because of the post-op care I’ve needed, and he’s been there for me every step of the way: entertaining me, enlightening me, engaging me, but in the end, taking phenomenal care of me. I trust him with my body and with my life. His work is simply stunning, and I’ve seen firsthand how he can transform a cancer-ravaged, wrecked body into not just a vessel for our souls but also a work of art.
So, in honour of my favorite doctor, I give you…
The Wubbulous Dr. S
And of all plastic surgeons, I’m strictly the best.
I see your mastectomy’s left you flat-chested,
Well, my reconstructions have never been bested!
If it’s hooters you want, then it’s hooters I’ve got.
I’ll shape up your shape till you’re hotter than hot.
You want to be buxom, then buxom you’ll be—
and you’ll be the envy of all that you see!
How can I do this? I’ll try to explain,
But it may be too much for your non-Doctor’s brain.
For, once I unveil this special contraption,
You’ll be quite amazed—it’s a natural reaction.
Behold! I give you the Balloon-Boob-U-Latron,
Which will stack up your rack to the stars and beyond!
And with this little dial on the side, I can choose
Whether you will get Double-D’s or…W’s.
So step right on up and I’ll rev up the engine.
By week after next, you’ll get LOTS of attention.”
“It sounds,” I replied, “Just too good to be true,
And besides, I don’t want DD or W.
I’m happy with simply a B or a C.”
“Nonsense.” He retorted, “Just listen to me.
As I said, I’m a DOCTOR. I’m SMARTER than you.
I’ve got major degrees coming out the wazoo.
You just sit back and whistle, while I do my stuff.
I’m starting the engine. You’ve said quite enough.”
And he chose Double-J on that knob on the side.
And I sat there and whistled. That’s all I could do.
But then two hours later he said, “We are through.
Behold! They’re magnificent!” Then I looked down.
“I don’t see a difference.” I said with a frown.
“Of course not.” He said, “For your eyes are untrained,
But I am a DOCTOR. I’m quite largely-brained.
They’re just getting started. You’ll see. They will GROW.
Trust me. I’m the best—Dr. S—and I KNOW.”
I went home, kissed my kids, then I laid down to rest,
And when I woke up, I saw shape in my chest.
Not much, I admit, but the doctor was right.
They were growing. And kept growing all through the night.
I woke up next morning, completely in shock.
I couldn’t believe it and, quick, called the doc.
“Dr. S,” I said, “Now for the shocker of shockers.
Something,” I shouted, “is wrong with my knockers.
The one on the left’s growing stronger than strong,
But the one on the RIGHT is decidedly WRONG.”
“Hmmm. You’d better come in,” Dr. S said. “I’m fairly
Sure something has happened that happens quite rarely.”
When he saw me, he flinched. I was very lopsided.
“You have an infection,” the doctor confided.
“A mycobacterium. That is my hunch,
And my LARGE doctor’s brain knows these things by the BUNCH.
I know just what to do. There’s no need to debate it.
The one on the left…we’ll just have to deflate it.
And we have other options to give you new breasts,
But I am a DOCTOR, and doctors run TESTS.
I’ll get back to you shortly. Just wait and you’ll see.
Meanwhile, I’ll send you to deflating room B.”
So my boob was deflated, and so was my mood,
And the next time I saw Dr. S, I was rude.
“Look here, Dr. S,” I said. “I mean no trouble,
But I live inside of the SUGAR LAND Bubble.
I know you’re a DOCTOR, but I say, what of it?
You can take your Balloon-Boob-U-Latron and just shove it!”
“Tut, tut,” Dr. S said. “I expected as much.
A Sugar Land patient needs a delicate touch.
I’ve run many tests on your bodice, you see,
And the answer’s so clear for a Doctor like me.
What you need is a TRAM FLAP procedure! I know,
Because I am a DOCTOR, so on with the show!
Since you’re a non-Doctor, I’ll lend you a hand:
TRAM FLAP stands for ‘Tit Repositioning And
Moving Fat Like A Puzzle’, which quite simply means
That you’ll have to gain weight. So, goodbye, skinny jeans!
You must grow a big belly to give me the fat
That I’ll move to your boobies, to make them un-flat.
So go forth and EAT! Eat ice cream! Drink shakes!
Gobble bon bons and beignets and beezlenut cakes!
Grow the fat for new hooters. Get busy. Get LARGE.
(The fat on your ass you can keep, at no charge.)
And because I’m a DOCTOR, I must prescribe PILLS!
Pills for THIS and for THAT and for medical bills.
The mycobacterium must go away,
So you must take these pills twenty-four hours a day.
AND because this procedure is tricky as treacle,
I’ll need an assistant. Please, meet Dr. Spiegel.”
Then in walked a woman so lithe and so smart
That I almost felt jealousy deep in my heart.
So, now I had Drs. S1 and S2,
One doc for each boob. What the sam hell to do?
And as soon as I met with S1 and S2,
It became quite apparent (as things often do)
That a struggle for power was starting to brew
About which doc was MY doc,
And who was the MAIN doc,
And who would I see when this process was through?
So for weeks I ate pastries, popped pills, and drank shakes
(And martinis and beers because that’s what it takes)
Till I had so much weight in my belly and butt
That I bore a resemblance to Jabba the Hutt.
At my next appointment, they pinched, poked, and prodded,
And at last both my doctors stepped back and they nodded.
“You’re simply ENORMOUS,” said Dr. S1.
“As big as a WHALE! What good work you have done.”
Then Dr. S2 added, “Yes, I agree.
There’s plenty of fat here. Just leave it to me!”
“Excuse ME?” shot S1, “But I won’t stand for that.
YOU can assist ME, while I move her fat,
For I am a DOCTOR…”
“Oh yeah? So am I.”
And in the stunned silence, they stood. Eye to eye.
But I finally spoke up and I said, “Ugh! For shizzle!
Yes, I KNOW you’re both doctors. I KNOW you’re both wise
But it’s MY reconstruction, so shut up, you guys.
Dr. S1, you have cosmetic vision,
So, you’ll do the OUTSIDE stuff. That’s MY decision.
Dr. S2, you’re as detailed as hell,
So you’ll move my fat, and blood vessels as well.”
Then they stared at me—stunned—like the strangest of fish,
And then Dr. S1 said, “If that’s what you wish,
I will finish the outside. But YOU, Dr. Spiegel
Must make room for ME and my extra-large ego.”
“All right,” said the slightly dejected S2,
“When I am all through, I’ll give over to you.”
“And she’ll be MY patient,” shot Dr. S1,
“She’ll be mine, mine, mine, MINE, from the moment we’re done.”
“Time’s a-wastin’. Let’s do it. Get going, you guys.”
So they wheeled me to surgery, both did their jobs,
And when we came out, I had spanking new yobs!
“Well, what do you think?” asked S1 and S2.
I replied, “I’m just glad that this whole thing is through.
I have boobs, and that’s fine, but I was fine before,
I just want my LIFE back. There’s so much, MUCH more.
I want to be free, be a mom, be a wife,
Write an end to this chapter of my so-called life.”
And what happened next? Well in Who-ville they say
That the doctors’ small hearts grew THREE sizes that day.
My story had touched them. It lifted the fog
Of their arrogance—and gave me stuff for my blog.
So, thanks to the doctors—their wisdom and skills,
Their sense of perfection, and even their pills.
I’m alive. I am whole. Though my journey’s not finished,
The front page of the Houston Chronicle today has an article entitled “Infections Top Safety Issues for Hospitals.”
For hospitals?? What about for patients??
I admit, before I became a statistic and contracted a nosocomial infection, I didn’t think much about it, and I would have to say that infections were not the top safety issue for me. Now, of course, I am a statistic, and I’m not very happy about it. Well, I learned a new word (nosocomial,) which usually makes me happy, but this time, not so much. In fact, not at all. I could have happily lived the rest of my life never hearing that word, much less learning about it so intimately.
The article in today’s paper got my attention, for sure, and I half expected to read a story similar to my own, but instead it’s about systemic vascular infections among Medicare patients. The article itself didn’t enlighten me much, and it never said specifically what kind of infections we’re talking about. Not a single mention of staph or mycobacterium to be found.
Sadly, I’m quite well-versed in those two topics.
The article did say that out of 46 hospitals in a 50-mile radius of Houston, half of them reported that Medicare patients under their care contracted infections. Some 472 “hospital-acquired conditions” were reported among 234,000 Medicare patients from October 2008 to June 2010.
I love how the infections are downgraded to “conditions” in print. I can tell you with 100 percent clarity that my hospital-acquired infection was not a condition. It was hell, and it became all-out war.
Even though I eventually emerged the victor, like most warriors, I will live in the shadow of that victory forever. I don’t know that I will ever feel completely at ease about the infection. I suspect the fear of infection will always be in the back of my mind. Like Harry Potter looking over his shoulder for “He Who Shall Not Be Named,” I will carry this monkey on my back for all of time.
It’s been a while since I have had the recurring dream in which my chest splits open and fluid is pouring out. Maybe that means I’m healing, mentally. In January I wrote about Post-Traumatic Stress Disorder, and how it’s not just for people in the military.
At that time, I was 5 months out from my last hospitalization for the post-mastectomy infection, and it was still alarmingly fresh in my mind. Today, I’m even farther out from that last hospital stay, and hope to continue putting distance between myself and that date. 8 months and counting….
I don’t freak out on a daily basis anymore, and having a reconstructed chest instead of a battle-scarred sunken stretch of mangled skin helps. A lot. To the untrained eye, I look like a normal suburbanite going about her daily business. I’m pretty much recovered from The Big Dig, other than some lingering soreness in my belly incision and the annoying fatigue that I can’t seem to shake. The reconstruction, like the cancer, was a piece of cake compared to fighting the hospital-acquired “condition.”
That “condition” and I go round and round, and even though I was the winner in our balls-out battle this past summer, it will always have a hold on me. The 256 days of oral antibiotics are case in point.
Twice a day.
256 days. With no end in sight.
The other day, I did something I haven’t done in all that time: I missed a dose.
This is huge for me. I’m a bit OCD when it comes to taking my meds, and I’ve been ridiculoulsy proud of the fact that after all this time, I’ve stayed on course and haven’t had to take a break, to nurse an upset stomach or to quell a GI disturbance. I’ve only barfed a couple of times, and it was because I didn’t eat enough to lay down a good base for those antibiotics.
But lately it hasn’t mattered what I eat, I always feel barfy. Once the simple carbs like crackers & pretzels failed to rid me of the ever-present nausea, I gave in and took the Zofran. The nausea was gone, but I couldn’t keep my eyes open. Clearly this would not be a daytime solution. Once I’d exhausted the simple carbs and Zofran plan, I resorted to alcohol. And lots of it. I figured, if I was gonna feel that bad, I might as well have a good buzz.
Not such a good plan.
I’m really glad I never read the 2001 study on vascular infections authored by Dr CA Mestress of Barcelona. In it he says that vascular infections are “dreadful surgical entities that are usually accompanied by a high morbidity and mortality.” Yikes. I’m really glad I didn’t know that until now. Dr Mestress goes on to say that these infections “require immediate diagnosis and aggressive treatment.”
The recent study on Medicare patients found in the Chronicle today quotes Donald McLeod, spokesperson for the US Department of Health & Human Services as saying, “We wanted to bring transparency to the fact that patients are exposed to potentially unsafe occurrences at America’s hospitals.” He goes on to say he hopes that the recent study will “spur hospitals to work with care providers to reduce or eliminate these hospital-acquired conditions from happening again to even a single patient.”
There’s that word again: condition. That’s gonna bug me.
It seems the recent study focused on vascular infections contracted via catheters, so who knows how many other hospital-acquired “conditions” are unclassified. Instead of giving me the details I want, the article devoted itself to discussing other hospital-acquired “conditions” such as bed sores, falls, mismatched blood types, and surgical objects accidentally left in the body after surgery.
Ok, so none of those things happened to me, and for that, I am grateful. Wonder if Harry Potter can whip me up a cure for the all-day nausea?
Was it really just yesterday that I blogged about how I rarely have trouble coming up with a topic about which to blog because my medical life is such an extreme cluster? Yes, I believe it was. Is it weird to quote yourself? Hope not, ’cause here goes: “…the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.”
Really??? Ya think? I especially like the “flare-up, break-down, or blow-out” part. I really appreciate a good turn of phrase, even when it’s describing my own hot mess.
Although I would love to parlay this instance into a new career as Madame Z, the all-knowing and all-seeing teller of fortunes, I know I’m not prescient. Oh how I wish I were, and I could see how this complicated tale would end.
I got some news yesterday that well, for lack of a better word, sucks. Just sucks. This week has not been good. I could blab on about all the reasons it’s not been good, first and foremost my own deranged impression that by this point, 3 weeks post-reconstruction, that I’d be on the mend and getting back to my normal life. Hahahahahahahahahahahahahaha. So funny. So deranged. So sad.
I won’t keep you in suspense, although the childish side of me thinks if I wait a little longer to spill this bad news, it won’t be entirely real. There is a moment of suspending the two worlds, the wished-upon-a-star-for-best-case-scenario and the hard-core, cold reality of bad news crashing through some already pitifully low reserves of cheer and optimism. That moment before speaking or publishing the reality of the latest bad news is precious, as it allows me to believe for just a moment that in this 50-50 shot, the odds may finally turn out to be in my favor. I’ve had some statistically unlikely things happen (cancer diagnosis at age 40, no family history, post-mastectomy infection), and I’d like to think that the great karma wheel is spinning my way.
But alas, it is not.
The news of my latest pathology report tells me that the giant karma wheel is not only refusing to spin my way, it’s come unhinged and is crashing toward me.
Smoosh me now, great wheel. Just get it over with.
The week began with a needle aspiration and the culturing of fluid to confirm or deny my suspicion that the infection was presenting itself. Dr Spiegel held out hope that these symptoms were just part of the normal healing process after a long, complicated reconstruction surgery. She wasn’t around this past summer for the infection saga.
The pathology confirms that I have a MRSA staph infection. In addition to the mycobacterium that is my ongoing nemesis. If you feel so inclined to learn a bit more about these bugs that make me want to cuss nonstop and invent new ways in which to curse and rant, just click on one of the handy links. If the text is a color other than black in this workspace, you can click it and get all the info you can hold on whatever fascinating topic is at hand. Today the topic is bacteria, followed closely by cussing and sticking one’s head in the oven.
A staph infection is sucky enough, but an MRSA is worse. It’s drug-resistant and hard to treat. The mycobacterium is very drug-positive (like me) and not hard to treat, but hard to kill. It moves slowly and reproduces slowly, so it doesn’t often avail itself to the stream of antibiotics entering its domain every 12 hours. The drugs keep coming, but don’t break through very often. Hence the need for the long-term antibiotic regime. 225 days long and counting. It’s also hard to tell if it’s cured. The best way to tell seems to be stopping the antibiotics and waiting to see if the symptoms appear.
I’m still waiting to hear what my infectious disease team plans to do about this latest development, but suspect it will involve adding either vancomycin or zyvox to my minocycline & bactrim habit.
No, we don’t know where this staph infection came from, if it was contracted during surgery or was already there. I think it was already there. Way back in July, when the post-mastectomy infection hit the fan, before the mycobacterium was diagnosed, many cultures were run. Myco is very hard to diagnose because it’s so slow-growing; it can take 6 weeks to present in a culture. By the time it’s diagnosed, you can be all better or really sick. I was really sick. I did have a staph infection at some point this summer, so it’s possible that this is the same one and it’s been lurking around waiting for a good opportunity to become more of a nuisance. Statistically speaking, it would be crazy rare for one person to have contracted not one but two infections during surgeries, but stranger things have happened. I don’t know enough about infections to know what the relationship is between the staph and the mycobacterium: do they travel together or is one opportunistic, presenting itself when its predecessor has already set up shop?
What I do know is that the new infection is a coagulase-negative piece of junk that not only makes me feel bad physically but also worries me. A lot. I try hard not to borrow trouble and to keep the “what ifs” at bay, but adding a new infection to an already crowded field makes me worry. And the fact that the new infection is creating physical symptoms in my newly created breast is very worrisome. Dr Spiegel spoke on Monday of worst-case scenario being the need for a simple outpatient procedure to excise infected tissue, clean and debride, and stitch it up neatly. She said the biggest downfall there is that it creates another scar.
Uh huh. Yeah. As if I’m worried about another scar. Rand McNally would love a chance to copy the lines and tracks and planes that the scars have created on my chest. Any my belly. And even my poor little belly button. Sweet little belly button was just minding its own business when it was callously sliced off and stitched back on in a new location. Poor baby.
So suffice to say, another scar is the least of my worries. And having been down this road before, I know that there’s nothing simple about excising and debriding infected tissue. Especially when that tissue has already been sliced & diced, carved and stretched and pulled practically into nonexistence.
I really hope I don’t have to do that again.
Last summer, in the heart of the infection mess, I’d had it. I was done. I didn’t think I could take any more. A cancer diagnosis and a bilateral mastectomy 3 weeks later followed by a nosocomial infection was too much. 23 days in the hospital, 3 additional excision surgeries, and more missed opportunities of summer fun and precious memories that I care to recount here.
This latest surgery, the reconstruction, was supposed to be the end of all that. It was supposed to be a symbol, a port in the storm, a beacon of hope. I’m not a big believer in panaceas, but this was supposed to be it for me. One last excision and debridement of the infected tissue, exactly 6.2 liters of antibacterial wash, healthy tissue transplanted from my belly, AND a brand new blood supply, a la microsurgically transplanted blood vessels was supposed to fix all my troubles and get me from victim to survivor.
What a load of hooey.
I’m gonna have to invent some new cuss words.
I’ve been reading up on and researching reconstruction. Oh, to return to the days in which the only context I had for reconstruction involved the South rising again.
Alas, that’s not to be, and the horse is out of the barn, the worms are out of the can, and we can’t unring that bell. So now reconstruction means something entirely different.
It was supposed to be a pretty simple affair: tissue expanders put in at the time of my mastectomy, which would be filled with saline slowly and gradually, over a period of a few months, to allow my skin to stretch and accommodate a set of perky but modest implants (male readers, go ahead and groan at the mention of modest implants.) Why does one need her skin stretched for implants, when millions of women get the orbs jammed into their chests in a single step? Because those millions of women haven’t had their flesh scooped out down to the ribs. (Hope you weren’t planning on eating BBQ anytime soon.)
Back to the implants: my simple affair turned in an epic fail when the right tissue expander exercised some really bad judgement in allowing a mycobacterium to share its space. Ah yes, the infection. That dadgum bug turned my world upside down, and fast-tracked me from post-surgery superstar to sick, sick, sick. My recovery was going so well. I was convinced I’d be back on the tennis court in a month. Sigh.
Moving along to option B: the TRAM flap. It’s a big surgery (8-12 hours average) with a week’s stay in the hospital and 3-to-6-month recovery. Youch. I didn’t really get how they accomplish this surgical feat, so in the course of my research I watched a youtube video of an actual TRAM flap procedure. “Ewww, gross” doesn’t even begin to cover it.
In laymen’s terms, the surgeon cuts a football-shaped piece from your tummy, with the incision going from hip to hip. He or she (for this purpose, we’ll say “he” since Dr S will be the surgeon, but y’all know I’m all about equal opportunity so I must digress) then cuts the rectus abdominal muscle, in its entirety or partially, and uses that muscle as the blood supply (e.g., blood vessels and small arteries) in the newly created breasts. Then he tunnels his way from the tummy incision up to the breast area, shoving tummy fat upward to create the new breasts.
After recovering from the grossed-outed-ness of watching this, I marveled at the ingenuity of the technique. Pretty cool stuff. But I admit it unnerved me for a few days. You may recall from previous posts way back when this all started that I HATE hospitals. I detest the smell, the noise, the lack of privacy, the parade of people in & out of the room, the clanking of carts up & down the hall, the cafeteria-style food, the machines beeping, the cords snaking everywhere, and the omnipresence of needles and IVs. I do like the morphine, though.
In addition to my extreme and unconditional hatred of all things hospital, I now fear them greatly and mightily because of the infection. I’m really, really scared. Like “want yo mama scared.” The risk of infection in any surgical procedure is estimated to be 3 percent. That’s pretty low, right? When you think about all the different surgeries done in all the different hospitals in all the different cities every day, that’s pretty low. But leave it to me to be the one person who gets it. Sheesh.
And leave it to me to get a rare infection that is not only hard to classify but hard to kill. Hence the never-ending 12-hour cycle of oral antibiotics. A quick back-of-the-envelope calculation tells me I’ve been taking those two oral abx for about 140 days. And there’s no end in sight.
So you can see why I’m not exactly rushing back into the OR for my reconstruction.
However, the compelling reason to get in there and get ‘er done is the complications still arising from said infection. Dr Grimes, my infectious disease doc, thinks that undergoing the surgery sooner rather than later will help clear up some of those complications by way of cleaning out the unhealthy tissue and replacing it with fresh new tissue with a brand-new blood supply. Sort of like replacing your old, threadbare socks with a nice new pair.
That’s why I was doing my homework and scaring myself half to death, so that I can go into my appointment with Dr S armed with knowledge and ready to proceed. I took a lot of notes and tried to keep up with all the different kinds of flap procedures: pediculed vs non-pediculed vs perforated, etc. Then there are variations on the procedure called DIEP and SIEA flaps (Deep Inferior Epigastic Perforator and Superficial Inferior Epigastic Artery, respectively). Prior to my research, I had no idea what TRAM stood for but speculated, based on my limited knowledge, that it was “That’s Rough on your Abs, Ma’am.” Turns out it’s actually Transverse Rectus Abdominis Myocutaneius. Good to know.
I didn’t pay much attention to the DIEP and SIEA flaps, because the TRAM flap was the only procedure Dr S had ever mentioned. I assumed that’s what I’d be getting. We all know what happens when you assume…
Dr Dempsey pointed out, however, that the DIEP flap is the one for me because it spares the ab muscle, something I will want and need as I go forward in my long, active, tennis-filled life. The DIEP flap is a more complicated surgery (12-15 hours), though, and there’s not nearly as much info available on it as there is on the TRAM flap.
Here’s why: the DIEP involves a lot of microsurgery. Instead of transferring the ab muscle and its blood vessels to the breast area, Dr S will make that big incision on my tummy, but leave the muscle there, removing the blood vessels and arteries entirely and reconnecting them in the new breasts. Apparently he will have to cut a piece of a rib, too, to make this all come together. I choose to skip over that part and not even think about it. Yikes.
The DIEP is considered the gold standard of flaps. And the reason there’s not as much info available is that it is a more technically complicated surgery, and not many surgeons do it. But if you’ve read any of my posts about Dr S, you know that he is the gold standard of surgeons, so I’m in good hands.