It’s not quite like that

Joanna Montgomery gets it. She really gets it. It’s a common misconception, yet something that those of us who’ve faced it head-on know. We know because we learn the hard way. Despite the Pollyanna snow job by pink-ribbon celebs like Giuliana Rancic and Amy Robach, having a mastectomy does not mean you get new boobs. Not even close. In this article, Montgomery explains it, succinctly and completely.

“There’s a huge misconception among the general populous about what it means to have one’s breasts removed and replaced with artificial ones (if they are replaced at all). When speaking about my upcoming surgery, I had many well-meaning people say things like, ‘Well at least you get new boobs!’ and, ‘Your husband must be so excited… has he picked ’em out yet?’ Yeah, well, it’s not quite like that. Not at all, in fact.”

Yeah, it’s not at all like that.

Here’s how it really is, as Montgomery so eloquently explains: “It seems that those not in the know tend to equate post-mastectomy reconstructed breasts with augmented breasts or ‘boob jobs.’ Nothing could be further from the truth. You see, augmented breasts are actually real live breasts with nipples and healthy breast tissue behind which silicone or saline implants have been placed, either under or above the muscle, thereby pushing them up and out. If augmented breasts didn’t look damn good, breast augmentation surgeries would not be so, ahem, popular. So even though augmented boobs are often called ‘fake boobs,’ they’re really not. I, on the other hand, do have fake boobs (or ‘foobs,’ as I have become prone to calling them).”

I have foobs, too. Not implants, but foobs made from my own flesh and tissue carved from my belly via a 17-inch-long incision.

Like Montgomery, I am thankful to have had skilled surgeons at the helm of my reconstruction, and I’m thankful to have good health insurance (although the out-of-pocket expenses are still hefty). Sometimes honesty about our foobs is interpreted as being ungrateful. Montgomery says, “those of us who either opted to have mastectomies as a preventative measure, or had mastectomies as a life-saving measure, aren’t excited about our ‘new boobs.’ In truth, we’ll never be the same. We see ourselves differently now when we look in the mirror, because we are different, inside as well as outside.”

 

 


Twinnies

As if one case of breast cancer isn’t enough, how about two cases?

dailymail.co.uk

dailymail.co.uk

Identical twin sisters Kelly McCarthy and Kristen Maurer from Indiana share a lot of things — including breast cancer. The 34-year-old sisters saw first-hand how devastating cancer is when their mother died from colon cancer last year. Like so many struck by breast cancer, the sisters had no family history of the disease.

Apparently it’s not all that unusual, though, for identical twins to develop the same cancer, because they have the exact same genetic makeup. In addition, twins also have a mirror effect, with one twin getting cancer in one breast, and the other twin getting it in the other breast. McCarthy and Maurer were no different in this regard.

Their treatment was similarly influenced by each other: McCarthy was diagnosed first, with triple-negative breast cancer in her right breast, while 9 months pregnant. A week later, her baby was born, and shortly thereafter she started chemo & radiation, then had a mastectomy. Because of her sister’s diagnosis, Maurer got tested and found early-stage cancer in her left breast and had a bilateral mastectomy with tissue expanders and then implants.

McCarthy’s reconstruction was a bit different: instead of going the more common route of tissue expanders  to implant, she decided on a second mastectomy on the “unaffected” breast and flap reconstruction of both breasts. The problem was, she didn’t have enough fat & tissue to create two new breasts. I had a similar experience, sorta. Well, minus the identical twin sister, but sorta. I had extra fat before my DIEP reconstruction, aka The Big Dig, just not enough in my belly, the main harvesting site for DIEP surgery. Instead of having a twin sister donate her excess fat, I had to gain weight so that there would be enough excess in my belly. I went on the All-Butter-Lots-of-Cheese-Bottomless-Beer-Mug diet and packed on 12 pounds. Sadly, not all of it went to my belly (the rest I happen to be sitting upon as I type).

The worst part of the forced weight gain? No, it’s not the leftover junk in my trunk or the persistent craving for beer. It was the “Grab the Fat” game I had to play, more than once, with my plastic surgeons to determine whether my fat was fatty enough. Egads, I’d almost forgotten about the “Grab the Fat” game. I wrote about in this post,

“I thought I’d plumbed the depths of humiliation with the ‘grab the fat’ game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.

Humiliating doesn’t quite cover it.

But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.”

McCarthy was fortunate enough to skip the “Grab the Fat” portion of the DIEP journey, but her sister probably endured it, because she donated her belly fat & tissue so that her twin could get reconstruction via DIEP surgery.  Maurer underwent abdominal surgery — not a tummy tuck, people, because there’s no free lunch in breast cancer  — to harvest the goods for her sister’s other breast.

How awesome is that??

Like most twins, McCarthy and Maurer share a close bond. But now, McCarthy said, “I feel closer. Her tissue is over my heart.”


Medical musings

If not for the priceless blog fodder, I’d be pretty steamed after my visit to my dermatologist yesterday. I’m ever so grateful for my sense of humor, especially after last week’s doctor’s appointment on a day that went from bad to worse to are you freakin’ kidding me??

My dermatologist is lucky I have this little blog as my outlet for all the things I’m compelled to rant about, to rail against, to bitch & moan about in general.

A little background: she’s a fantastic doctor. She embodies many of the traits I’ve come to appreciate and insist upon while spending time in an exam room. She’s punctual, no-nonsense, very thorough, and more than ready with the prescription pad. Her office is staffed by all women, with nary a male doc in sight, which thrills me to my feminist bones.

She is, however, not going to win a prize for compassionate bedside manner. She is not the most compassionate doctor I’ve ever met, and this was on full display yesterday.

Perhaps it’s my bad for scheduling a first-thing-Monday-morning appointment. Maybe she had not had her RDA of caffeine. It’s possible that her personality pills had yet to kick in at that early hour. Whatever the reason, she didn’t waste any time with pleasantries. I’m cool with that, and as much as I enjoy having a comfy relationship with my health-care practitioners (especially those who see me naked), I’m good with the all-business appointment that gets me out of there and on with my life.

I sat on the paper-covered exam table in my thin paper gown precariously close to shivering — yes, people, a temperature of 52 degrees in South Texas does count as c-o-l-d, and I’m aware of the fact that 52 degrees could be considered a heat wave in some parts of the country at this time of year. I was awaiting my doctor to come in and do my annual mole check. Because I had melanoma several years ago, I take my mole checks very seriously, and as much as I hate stripping down to have every inch of my flesh examined, it’s a necessary evil and one I never skip out on.

My melanoma showed up on the inside of my right foot, on perhaps the one and only body part without any excess flesh. A number of specialists were consulted on how best to excise the infested tissue in such a delicate area. Opening the area and excising the melanoma weren’t the problem, but closing the incision was. Little did I know that that experience would be the first of many “think of the most complicated scenario” scenarios in which I would find myself. Post-mastectomy mycobacterium, anyone? In case you’re wondering, the solution to the flesh-less foot melanoma was Mohs surgery in which the surgeon used a zig-zag shaped incision to allow him to close that incision with limited flesh upon which to draw together. I have a now-faded zig-zag scar that predates Harry Potter’s lightning bolt on his forehead. I had a lightning bolt scar before lightning bolt scars were cool.

Anyhoo, back to my terse and not-so-warm-and-fuzzy dermatologist. The first thing she said when she walked into the exam room was, “What are you doing about your rosacea?”

Um, I didn’t know I had rosacea. My face gets red when I exercise and when it’s cold outside — and again, 52 degrees does count as cold — but I certainly have never had the bright red spots that I associate with rosacea. Great, now I’m feeling self-conscious.

I asked her what she thinks I should do about my rosacea (and I want extra credit for not asking it in a smart-assy way; I mean, she is the doctor, after all). She shrugged and said there aren’t any creams on the market that really help, although there are a couple in FDA testing that should be available in a few years. Meanwhile, she thinks I should go for several laser treatments, which start at $600. Out of pocket, I’m sure. She suggested that I figure out what my triggers are and avoid them. Since she didn’t go into any detail on the common triggers, I looked them up myself and found that they include stress (not gonna get away from that one anytime soon), spicy food (I do like my jalapenos and Frank’s Hot Sauce; I put that beep on everything!), hot beverages (I’m a two-cup-a-day coffee girl), sun exposure (did I mention I live in South Texas?), exertion in hot weather (again, South Texas), oral antibiotics (so I’m guessing that 267 days of two different oral abx would factor in here), and drumroll please…the last trigger for rosacea is…alcoholic beverages.

Ok, I’m out. I’ll just have to figure out a way to live with my extra-rosy cheeks because every item on the list is a factor, but the last one is a deal-breaker.

Moving along, she examined me and made notes of the normal-looking moles scattered here & there on my body. Because of being inducted into the pink ribbon club, I’ve spent plenty of time mostly naked in doctors’ offices. I’ve had my flesh poked & prodded and examined quite intently enough times that I don’t even think twice about it; in fact, I got so used to the weekly follow-up exams after the mastectomy, the multiple surgeries to rid my chest wall of the mycobacterium, and then the Big Dig reconstruction that it seemed weird to not take off my clothes at the doctor’s office.

However, none of my previous time spent in my birthday suit with a doctor prepared me for her question: Why did you have a mastectomy?

Ummmmm, because I had breast cancer?

Why else do women undergo such a physically and emotionally taxing surgery? What kind of question is that???

I wondered for a sec if I’d heard her right, then answered “Ummmmm, because I had breast cancer.”

She then wanted to know why I had a bilateral mastectomy; was the cancer in both breasts? I replied no, at least not that was detected by the multiple mammograms, bone scan, or PET scan, but that was the right decision for me. Once I heard I had breast cancer, I took a slash-and-burn approach. Good thing, too, because my post-mastectomy pathology showed a large and scary smattering of micro-mets that were likely just waiting to organize into a full-blown tumor, with a bonus of Paget Disease to boot.

She complimented my reconstruction and said it looks good, that they see a lot of it, and mine is better than most. I replied that I was very fortunate to have such skilled surgeons, yadda yadda. It never seems like the right time to mention that while my surgeons did an incredible job with my reconstruction (especially considering how wrecked my right chest wall was after the infection), it’s still reconstruction, and I was perfectly happy with my breast before I had to have them chopped off and rebuilt using another body part. It never seems appropriate to talk about how the reconstruction restored some mass to my previously scooped-out chest, but it’s not the same and will never be the same as it was before. I never feel as if the conversation will meander toward the topic of how no matter how skillful the reconstruction, there’s no way to escape the constant and visual reminder that I had cancer. I’ve yet to find a way to say that the myth of getting new boobs after breast cancer is just that, a myth. Yes, they’re new, but they’re not really boobs. I can’t ever figure out how to say that while I’m very grateful to have had access to the best docs in one of the best medical facilities in the world, and yet my reconstruction still leaves me feeling less viable. It’s certainly not considered polite chit-chat to recount how grueling the DIEP surgery is, how precarious the transplanted blood vessels are, how unbearably uncomfortable it was to be in the ICU with heaters blowing to warm those blood vessels, or how the stress of flap-failure can bring on some serious PTSD.

All that from a sincere compliment about my reconstruction. Sheesh, what a head case I’ve become.

Just as I was talking myself down from the myriad ledges my brain landed on and working hard to get back to the present moment, which was a simple mole check, my dermatologist asked another question: Where did they get the flap from for my DIEP? From my belly, I replied, and braced myself for the inevitable comment about how nice it must be to get a “free” tummy tuck. Before she could utter that platitude, I launched into a distrationary tale about how I had to gain weight to create enough belly fat to make a good flap; ha ha ha, I said, it was so funny that I had plenty of fat in my hips & thighs but not in my belly. As I lay on my belly and she examined my back, she asked why they didn’t take it from my back (because apparently there was plenty available, and she was staring right at it). Well, because I didn’t want to lose my tennis serve, I said, resisting the urge to ask for a mirror so I could see just how fat my back is.

The coup de grace, though, came when she said how lots of people probably envied me having to gain weight for the surgery, and then delivered the final crushing blow to my already-battered ego by saying, I guess you’re still working on losing that weight, huh?

Yep. Still working on it.

And I’ll keep working on it. Right after I find a new dermatologist.

I wonder if this guy is still in practice.


Footloose and fever-free (mostly)

As 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.)

googleimages.com

Kim is a scrappy, smart player who gives it all on the court. Her “split shots” wow me every time.

googleimages.com

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.”


All aboard the freak-out train

I’ve been slowly but surely freaking out about this surgery. I was all ready for it this time last week, but it was not to be. Having to wait a week because of pokey construction at the surgical center didn’t make me happy; I don’t like to wait in general, and on something this big and this important, even less. If there’s more than one person in line ahead of me at the grocery store, I consider that a long wait, so imagine what waiting a week has been like.

The wait is over and the day is here. I’m ready.

I prepared in numerous ways, including waking up multiple times each night; making myself half crazy with worry; imagining every possible way the dreaded infection could sneak back into my life; going overboard on stocking the house with groceries; meeting myself coming and going with laundry and errands; and cooking meals that my children won’t eat.

I also did the one things I really should not have done, and that I also did the night before The Big Dig, aka reconstruction: I watched the surgery on youtube.

No wonder I can’t sleep at night.

Why do I do this to myself? I know full good and well that watching that stuff is going to creep me out. Picturing my beloved doc doing those things while I’m sawing logs really creeps me out. I trust him with my life but hate to think of what he’ll be doing to me this morning. I’m gonna be one sore chica.

I scrubbed myself with Hibiclens this morning, to kill off any friendly or hostile bacteria living on my skin. You know your life has changed — and not for the better — when you have a bottle of the Hib in your shower (insert sad face here). 

Here’s the game plan: I’ll show up at the surgery center at 8 a.m. without having had my daily cup of coffee or one bite of food since bedtime (I’m not very pleasant when I’m hungry; I’ll be the first to say it. And BTW, packing my kids’ lunches without being able to have one bite of food myself is cruel. There’s not much in their lunches I would eat anyway, but still). I’ll put on the hospital gown and shower cap, and possibly the compression hose. I’ll get marked up by my doc, which involves standing naked in a small room while he peers at and examines up-close the fattiest parts of my body; he’ll use a Sharpie to annotate the choice cuts that he’ll be removing, and I’ll try to slink into the OR with my dignity intact. I’ll endure the inevitable digging by the anesthesiologist and/or nurse anesthetist in a fruitless attempt to find a vein that doesn’t roll over and play dead; this usually involves multiple pokes and results in a giant bruise. I’ll watch the clock and wonder how much longer until they give me the shot that makes none of this hardship matter as I drift off into a heavy-limbed, blissful sleep. I’ll endure who-knows-what kind of horror show as my doc and his team manipulate and position my sleeping carcass to extract maximum fattiness. Some he will keep, and some he will throw away. The fattiness he keeps will be spun in a centrifuge to extract all the liquid. Then the liquid-free, pure fattiness will be injected into my sunken chest. I’ll wake up in the recovery room several hours later, trying not to barf and thinking how good it will feel to get home and leave the hospital stink behind. I’ll hope that I get home before my kids’ school day ends, and will hopefully, fingers crossed, please, please, please be one step closer to reaching the finish line and being done with the aftermath of breast cancer.

Fingers crossed.


Change of plans

Yesterday was pretty crazy. We were stranded Sunday night in Boston because of weather and heavy air traffic in the New York area, and had to spend the night in a hotel. We made the best of it, but being a day behind schedule bugs me and my type-A ways, especially when my to-do list is long and my time for completion is short.

Home sweet home ala Charles Schultz

I’ve traded the beach views for the view of the lake across the street, and while the vacation was fabulous, there’s no place like home. I love the beach and never tire of the sound of the crashing waves, but there is something to be said for the comfort of sleeping in my own bed.

Monday was supposed to be my day to “get ‘er done” and take care of all the pre-op chores. I did indeed get it done, but was half a day behind because instead of hitting the ground running, I was traveling from Boston to Houston. Don’t be jealous when I tell you I spend yesterday unpacking, going through a big stack of mail, sorting the recycling, doing laundry, getting groceries, organizing school supplies, returning phone calls, and giving thanks & treats to our pet sitters.

Today would have been a similarly busy day, but instead of wrapping up last-minute things before the surgery, I was fielding a call from my doc’s office tell me that the surgery had to be postponed. The surgical center that he uses for the type of procedure I’m having is under construction and behind schedule. Did I mention that I don’t like a change of plans?

My brain has been racing with details of the to-do list, and unwelcome thoughts of the surgery keep bulling their way in. I’ve been strangely nervous about this procedure. I expected to be joyful and excited but instead I’m uneasy. This should be a piece of cake compared to the many previous procedures; it’s out-patient for once. It also should signal my approaching the home stretch. I’m not there yet, but with this surgery behind me I would be one step closer.

So why the nerves? As REM would say, “What’s the frequency, Kenneth?” I have no idea, but perhaps it was my instinct telling me it’s not time, it’s not going to happen. Perhaps it’s the proximity to the start of school and the end of summer. I’m not good with transitions and definitely don’t like change (part of the Type-A package, perhaps?); even though the shift from summer to starting school is usually quite welcome (for me, but not my kids), I’m struggling this time around. I’m all ready, but still feel like there’s not enough time. This procedure has been in my mind a harbinger of the end of summer and the beginning of the elusive pursuit of getting back to “normal.” When I endured The Big Dig in March, I knew that as gee-gantic as that surgery was, it wasn’t the end of reconstruction and that a couple of revisions would be required. Once everything settled, so to speak, after The Big Dig, I was left with a decidedly less-sunken chest and absence of post-mastectomy-infection scar tissue. Things were much improved in the chest region. However, as with most masterpieces, the first draft wasn’t the final draft.

The second draft was scheduled to commence at 6:30 a.m. tomorrow in a hopefully-germ-free surgical center instead of the mega hospitals I’ve been in for the previous gigs. The goal is to reallocate some fat from the ends of the 17-inch belly incision to fill in the not-quite symmetrical boobage. I’m requesting that my doc fine-tunes my belly-button scar, which is kinda grody, and  he will also work his magic on the spots of scar tissue along my belly incision. There are several pea-sized spots that are quite the menace: pain, throbbing, and impaired mobility top the list. I hope that there will also be some cleaning up of the “whale tail” ends of the belly incision. As the moniker suggests, the ends of that big-ass incision look like a whale’s tail, and while I marvel at the giant sea creatures, I don’t want a facsimile on my bod. Thank you, googleimages, for the visual. Imagine that lovely tail upended vertically instead of horizontal and you’ve got a good idea of what the ends of my giant incision look like.

But alas, none of this will happen tomorrow, and I have to wait. In addition to not liking a change of plans, I’m not a big fan of waiting either.

The reason for the delay is legit, yet my cries of “find me another surgery center so we can stay on schedule” went unheeded. It seems that the surgery center I was scheduled for has the right equipment for the fat transfer procedure, and while we certainly could find another gig, there’s no reason to rush it and every reason to wait until all the conditions are right. Not every surgery center/hospital has the stuff my doc needs to suck out my fat, and the one that does have the right stuff isn’t accommodating patients just now.

Three things about my visit to the doc today that were unpleasant, besides the news of the delay. First, he introduced a possibility that I had not considered: infection.

Oh yes, infection.

The very thing that dominated my life for most of the past year is now conveniently shelved in the way-back recesses of my brain. I hadn’t even thought about the possibility of re-introducing or re-acquiring an infection. Yet as my doc lovingly pointed out, with me you just never know.

So he’s thinking of sucking the fat out of the dog ears and throwing it away. Sounds great, right? Get rid of the little bulges at either end of the big-ass incision. I’m all for that. But then what do we use to smooth out the not-so-round part of my newly constructed chest?

And that brings us to the second thing that was muy unpleasant during my appointment today: the search for other sources of fat.

I thought I’d plumbed the depths of humiliation with the “grab the fat” game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.

Humiliating doesn’t quite cover it.

But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.

And in closing, we’ll cover the third and final unpleasant thing about my dr’s appointment today: prophylactic antibiotics.

Yes, that’s right: I used the “A” word. Antibiotics. Again.

I’m going back on my old friends Bactrim and Minocycline as a preventative. Just in case any wily bacterium were thinking of re-establishing a house party on my dime. I’m nauseated just thinking about it. I spent how many days taking the dynamic duo? 267. Yep, 267 straight days of swallowing 2 pills every 12 hours.

Is there no end to this madness?

Stay tuned.


It’s that time of year again

Summer in Texas means a few things: happy kids, hot & humid days, and baseball All Stars.

Texas is a baseball powerhouse in general, and our neck of the woods is no different. We’re right down the highway from Pearland, whose Boys of Summer blazed a trail from Texas to Williamsport, Pennsylvania, last summer to go nearly all the way in the prestigious Little League World Series.

houston.culturemap.com

This truckload of Pearland boys could be from any Little League in Texas; hopefully in a couple of years it will be my kid’s First Colony team. We watched every game last summer, cheering for those boys in blue and hoping they would prevail. We laughed at the way the media zeroed in on the Pearland moms and their blinged-out team shirts. I guess not everyone “does” baseball that way, but around here, it’s de rigueur for baseball moms to have glitzy shirts, often with their kid’s number emblazoned in rhinestones. Writer Ken Hoffman said the Pearland team “tore through Texas tournaments and blew into Williamsport with tape-measure home runs, speeding- ticket-worthy fastballs and bedazzling mothers that the Little League World Series won’t forget.”

chron.com

All Stars is an exciting time. Grueling, too, with practice 7 days a week until the games start. We plan our vacations around the All Stars schedule, and schedule our daily activities around practice. The first tournament begins Tuesday, and I sure hope the Big Red Machine blows through District and Sectionals the way they did last summer, blazing a trail straight for the State Championship in Tyler, TX.

Since I missed pretty much all of it last summer, I didn’t realize that our district, Texas East Little League, “stretches from the Sabine River in the East to I-20 in the North to I-35 on the West to San Antonio and from there to the Gulf of Mexico and back to the Sabine River,” according to the Texas East website. 

We’re that little strip of green in the middle, District 16. Texas is a big state, the second-biggest in the country in both population and area, and baseball is serious business around here. I don’t know how many Little Leagues there are in Texas, but considering that this great state is 773 miles wide and 790 miles long and populated by some 25 million people (thank you, Wikipedia), I’d say there are a bunch.

I’ve written a lot about having missed so many of Payton’s games last summer. Don’t worry, I’m not going to re-hash it today. Suffice to say that if it had just been the bilateral mastectomy in mid-May, I would have been in fine shape for the All Star summer schedule. But no, the post-mastectomy infection had to surface, and the resulting hospital stays and surgeries meant there would be no trip to Tyler for me. From the moment that infection reared its ugly head, my life became one complication after another, and I began to live the famous Winston Churchill quote of “If you’re going through hell, keep going.” Just do it without being able to watch your kid play the best baseball of his life. From mastectomy to infection, to nearly 30 days in the hospital, to multiple tissue excisions, to saying good-bye to the tissue expanders, to a shaky recovery involving all manner of antibiotics and home health, to slowly very slowly getting a semblance of a normal life back to finally getting around to reconstruction, to the long recovery process after The Big Dig. Quite a circuitous route I took, with very little baseball.

So this summer, I’m going to soak it all up. Every scorching minute of it. Since Texas is in a major, seemingly unending drought, we probably won’t have to worry about getting rained out, like we did a few times last summer. I’ll be in my blinged-out shirt, cheering hard for the boys in red, and reflecting back on how much I missed last summer at the ballpark.


One year ago today

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.

Dr Grimes, my hero

Tammy Sweed, I adore you!

The week before surgery, Payton turned 11

and Macy & I pampered ourselves with a Chinese foot massage.

I squeezed in as much time as I could with my girls

I didn’t know it would be a while before I did anything like this with my favorite girl.

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

and my dogs (and their friends).

I had no idea how many times I’d need the special parking place.

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.

My cousin Teri’s hubby Tom made me more than one coconut cream pie. I ate a lot of this

but not nearly enough of this

Keith’s crab towers were chock-full of healing properties.

As was this:

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.

A week after surgery, I began to feel a bit more human and was blown away by my little girl wearing a pink ribbon on her shirt–all her idea, BTW–to school every day.  

I was not enjoying the amount of time spent doing this:

although Pedey enjoyed every lazy minute of my recouperating.

Seeing me in jammies all the time gave Macy an idea: she could raid my jammie drawer and wear them herself. 

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.


It’s my cancer-versary

One year ago today the bottom fell out of my carefully-ordered life when I was diagnosed with breast cancer.

To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.

Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.

Then came cancer.

That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.

Until April 27, 2010.

My guardian angels were asleep at the wheel. 

I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.

When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids? 

They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.

One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.

The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did. 

Mastectomy day, I was up bright & early and ready to get the show on the road. Here I am at the hospital waiting to get de-cancer-fied.

Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.

A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.

Good thing I did, because my healing and happiness were short-lived.

Macy had just posted this on her chalkboard, and for all we knew, the worst was behind us and it could only improve from there. Hahahahahahahahahahahaha.

Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.

Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.

She also gave me Baby Snoopy, another coveted member of the “crew,” and my  heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.

Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep.  That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of  IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.

Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.

Remember Sucky, the wound vac? This photo is harder for me to look at than the one of the wound. Oh, how I hated Sucky. Necessary, yes, but hateful. And that’s all I’m going to say about that.

This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror. 

The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.

I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party. 

The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.

The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.

I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection. 

Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.

The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size. 

I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.

Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids. 

Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!

My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.

One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.

Before the summer was over, we had the chance to puppy-sit this little beauty a couple of times. If puppy kisses can’t cure me, I don’t know what can! 

Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.

School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great.  What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show. 

August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause. 

October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.

We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won. 

This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.

As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.

Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.

Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.

The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.

This is what I looked like before The Big Dig:

and this is what I looked like 3 days later, leaving the hospital:

It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key. 

One thing I would not miss from the hospital was this chair.

This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.

Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.

But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.

I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.

One year ago, life took a decidedly unpleasant turn. Cancer entered my life like an afternoon storm along the Gulf Coast. 

And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.

Like the pillow on my bed says, I am a survivor.


Extra! Extra!

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.

the-leaky-cauldron.org

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.

256 days.

Twice a day.

Every 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?