What not to buy me for my birthday
Posted: May 27, 2011 Filed under: breast cancer | Tags: cancer battle, cancer diagnosis, charity navigator, frustrated with breast cancer battle, losing your breasts, mastectomy, Nancy Brinker, new boobs, Promise Me, Promise Me Perfume, psychological effects of breast cancer, Race for the Cure, reconstruction, recovery, survivor, Susan G. Komen Foundation, Suzy Goodman Komen, Wendy's, Where's the Beef? 14 CommentsIf you’re still searching for the exact perfect gift for my upcoming birthday, here’s a tip: don’t buy this.
promisemefragrance.com
It seems the marketing machine at Komen is looking to get a little more mileage from CEO Nancy Brinker’s book by cross-promoting a Promise Me perfume. Thanks to my blog friend Katie at Uneasy Pink for bringing this to my attention.
The more I learn about the Komen organization, the more I resent the “for the Cure” part of its name. IMHO we pink-ribbon girls do owe a debt of gratitude for the de-shaming of our disease compliments of Komen, but I don’t yet see what the organization is doing “to end breast cancer forever,” as it says in its mission statement.
komen.org
We all know the story: Nancy Goodman Brinker promised her dying sister, Susan G. Komen, she (Nancy) would devote her life to ending breast cancer forever. Suzy was diagnosed in 1977, in the dark ages of BC, and sadly she died from the disease at age 36, leaving behind 2 young kids and a grieving family. Give the Goodman family credit: they channelled their grief and put it to good use. In 1982 Nancy’s promise became Susan G. Komen for the Cure® and “launched the global breast cancer movement,” whatever that means.
Komen says that today it is “the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.”
Perhaps Komen is best known for its Race for the Cure®, which has raised a ton of money and Komen claims to have “invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.” I love the idea of an army of pink in races across the globe. Walk, run, push a stroller, whatever, but get kitted out in pink and raise some serious cash. No argument from me on this one.
I wasn’t well enough to do the Houston race this year, but several people I know did, and the race was a success, financially and from a feel-good standpoint. One of my sweet friends, Paula, did the race in Salt Lake City and was kind enough to put my name on her back, something that touches me to the depths of my soul.
I have no argument with Komen’s claims to be the BC authority, nor with the money raised. However, it does bug me that Komen’s quest for “the Cure” has been so fruitless. While I very much appreciate Komen making BC the most glamorous cancer, where is the Cure? Komen has been working since 1982 to find it, and yes it certainly is a complicated bugger, but I’d sure like to know what progress has been made.
Forgive my pessimism, but I don’t see what Promise Me perfume is going to do to find the Cure. Katie was kind enough to break down the math on Komen’s latest marketing cash cow, and basically here’s how it plays out:
A 3.4-oz bottle of Promise Me Eau de Parfum sells for $59.00. Of that, 13.5% goes back to Komen , but only $1.51 per bottle will be spent on research.
No, that’s not a type-o.
$1.51 a bottle goes toward research.
Now, I’m not going to get into the many ways in which this is completely whacked, but suffice to say that $1.51 a bottle isn’t going to find “the Cure.”
I’ve looked at Komen’s figures before and was shocked to see how precious little is devoted to research. I’ve heard survivors who do the Race for the Cure complain that every penny of the entry fee goes to cover administrative expenses. Again, where is the Cure?
At the risk of sounding like the granny in the old-school Wendy’s commercials who asked “Where’s the Beef?” I do wonder where’s the Cure.
googleimages.com
A quick peek at the charity navigator website talks a lot about Komen’s program expenses, fundraising expenses, and administrative expenses, with nary a mention of research.
Thus, I will not be buying the new Promise Me perfume, no matter how seduced I am by its “alluring Floriental fragrance combining classic elegance with a modern twist.”
I don’t even know what Floriental is, but I know I don’t want it. Even though its “initial impression is fresh and uplifting.” I can get fresh and uplifting from a bar of soap, thank you very much.
The marketing material claims that “as the fragrance becomes one with your skin, the floral bouquet blossoms in the heart, revealing sensual femininity.”
Oh, so that’s how I get my sensual femininity back after having both breasts chopped off? By spritzing some Floriental toilet water to lend “warmth and opulence and envelope the senses with a long-lasting trail”?????? How about find the Cure, so women like me don’t have to go through what I’ve been through? How’s that for an idea?
Maybe the “top notes of mandarin, bergamot, and blood oranges” blend nicely with the “base notes of white patchouli and creamy musk” to accomplish a good scent, but if you know what “sparkling yuzu” is will you please let me know? And tell me what it smells like.
Because I think it’s the smell of innocent consumers being hoodwinked.
You’ve got 5 more shopping days until my birthday. Don’t bother with the Promise Me perfume.
These boots…
Posted: May 25, 2011 Filed under: breast cancer | Tags: beware of alligators, birds in a nest, breast cancer, cancer battle, cancer diagnosis, inspiration from nature, Italian cypress, psychological effect of cancer, recovery 2 Comments
I’ve been looking at this art a lot lately. Sometimes I’m more drawn to it than other times, rather like people I suppose. You know how certain friends drift in and out of your life, and your relationships have ebbs and flows — sometimes you can’t get enough of each other and talk multiple times a day, while at other times you go weeks without speaking then, if you’re lucky, pick back up right where you left off. That’s how you know a true friend, IMHO. The picking back up right where you left off part. Love that.
This little gem hangs in my bathroom, right above the light switch. Sometimes when I’m in a giant hurry, as opposed to the regular-sized hurry, I knock it clean off the wall as I grapple for the light switch, dashing to and fro through the house, delivering bundles of clean laundry, exchanging tennis shoes for flip flops, and going about my daily domestic business.
I glance at this little gem every day, sometimes more than once, and in the heat of the battle that was Nancy vs Breast Cancer in the qualifying match, then Nancy vs Mycobacterium in the main event, it made me smile. The battle was long and arduous, and any little thing that propelled me forward or gave me pause to chuckle was most welcome.
In retrospect, I see that the simple yet sassy message on my little piece of art reminded me that I had what I needed for the battles at hand. I was well-equipped with research; statistics; drug therapy information; most excellent surgeons; first-class hospital care (except for the part in which I got an infection, that is); an army of friends & family to help with kids and meals and dogs and errands; and comprehensive medical insurance to cover most of the nearly $300K I’ve racked up so far.
Inspiration comes in many forms. For some, it is found in nature. As I type this, I see the gentle motion of the lake across the street, calm waters moving peacefully just beyond the sign that says: “DANGER! Beware of Alligators.” 
As I glance upon the calm yet gator-infested water, I hear birdsong of many varieties. While the little birds that perch on the peak of our roof drive Harry the dog completely insane, I like their song and welcome their feathered presence into the hustle & bustle of my busy day.
Hearing the peep! peep! peep! of baby birds in a nest, buried high and deep in the Italian cypress trees along my back fence, made me smile and reminded me that life’s not so bad, even with cancer and infection and all that mess.
I suspect those babies have grown up and left the nest, as it happens quickly in the bird community. I haven’t heard the sweet little peeps in several weeks, nor have I seen parental bird figures flitting in and out of the cypress to care for their young. The only evidence that the fledgling family was even there is the one long string, raffia-like, that must have been used in the nest-building process. It sticks out of the cypress about 8 inches, and while I always assumed it was leftover building material, it strikes me now that perhaps the industrious nest-builders placed it there on purpose, to make it easier to find the nest from outside. The 3 cypress trees along the fence are identical in appearance, and the nest was buried deep within, not at all visible from the outside. Perhaps the momma bird told the daddy bird to leave a piece visible from the outside so they’d never have to stop for directions.
Or maybe it’s just a fluke.
So much in life is just that, a fluke.
Tennis time
Posted: May 20, 2011 Filed under: breast cancer, drugs, infection, tennis, Uncategorized | Tags: Arnold Schwarzenegger, battling breast cancer with a friend, Bilie Jean King, breast cancer, cancer battle, cancer diagnosis, DIEP breast reconstruction, infection, IV antibiotics, loss, mastectomy, mycobacterium, new boobs, nosocomial infection, plastic surgeon, plastic surgery, post-mastectomy, PTSD, reconstruction, recovery, survivor, tennis, tennis drills 10 CommentsToday’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.
It’s tennis.
Finally.
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.
The SCAR Project
Posted: May 19, 2011 Filed under: breast cancer, cancer fatigue, infection, Surgery | Tags: "just write", Barbara Delinsky, breast cancer, cancer battle, cancer diagnosis, David Jay photographer, infectious disease, Nancy K Brinker, new boobs, pink ribbons, plastic surgery, post-mastectomy, Promise Me book, Race for the Cure, reconstruction, recovery, survivor, Susan G Komen, The SCAR Project, Uplift, Wordpress, young cancer patients 20 Comments
duggal.com
Listen up, people: this is really important.
If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.
The project’s acronym stands for “Surviving Cancer. Absolute Reality.”
I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”
And how.
one of the many "pink ribbon" cards I've received
I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.
I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic. I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis. The SCAR Project is following suit.
As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.
One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”
We’ve come a long way.
But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.
The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.
When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.
Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it. Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.
dailymaverick,.com
Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:
“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”
Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.
lipmag.com
I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.
I get by with a little help from my friends
Posted: May 17, 2011 Filed under: breast cancer, food, kids | Tags: Ashton Kucher, Bill Murray, breast cancer, cancer diagnosis, Chevy Chase, family, fighting with kids over what to wear, Gap Kids, J Crew, J Crew kids, kids, kids' clothes, Photoshop, Sophia Katopodis 6 CommentsMy friend Amy Hoover, who you “know” from the blog, is a great cook (she’s from Louisiana, after all), and she fed my dad when he was here for The Big Dig. When he told her that I ususally put some leftovers in the freezer for him along the way so I can send him home w a care package, guess what she did? Brought leftovers, which are in the freezer for him as we speak. Homemade spaghetti sauce, crawfish etouffe, Cajun chowder and who knows what else await Dad in the freezer, and he’ll live off her goodwill for quite some time. Good friend.
When I realized I would need dress clothes for Payton for Sophia’s funeral (he wears NOTHING but t-shirts & Nike shorts), Amy, who has 3 boys, brought over a pile of clothes — several dress shirts, 2 suits, dress pants, a bag of ties & 3 pairs of dress shoes.
Ties and belts, too. Those Hoover boys are some sharp-dressed fellas.
Having a kid who is so averse to dress clothes seems like something out of a movie — a bad movie, probably one starring Chevy Chase or Bill Murray in their heydays, or maybe Ashton Kucher nowadays. Somebody sweet but bumbling, clueless as to why societal conventions like dress clothes should matter in the real world.
I’m long since over the wish that my little man would dress better. He is who he is, and one of the best things we can do as parents is recognize our kids’ innate beings and help that version flourish, rather than imposing our ideal on them.
Do I think P would make a great Gap Kids model? Uh, yeah. In fact, when he was teeny, people commented on how he should be on TV or in a magazine. I assumed they meant because he was so cute and preppy, and not because he would grow up to star in a movie about a sweet but bumbling guy with no fashion sense whatsoever.
gap.com
gap.com
J Crew would work, too. I can picture him in Crew threads for sure.
jcrew.com/boys
jcrew.com/boys
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He could totally pull off the Gap or J Crew look. But pulling off the look would of course require him to actually wear the clothes. And therein lies the rub.
There was a brief period of time in which I could dictate what Payton wore.
He was downright stylish for a very short time. Not sure I can say the same about my hair and goofy Christmas sweater. Wish I knew how to use Photoshop.
For a while, I could even get him to wear thematic outfits, like this get-up for a friend’s Western-themed birthday party.
Then came the cars & trucks look. Every shirt featured something with wheels. He looked pretty good, I must say.
He rocked the Hawaiian shirt look quite nicely, too. 
The last time he wore khakis and a polo might have been at his Uncle Aaron’s wedding. I was pregnant with Macy, and P was young enough to not care what he was wearing, as long as he could run and jump and stir up trouble. 
By the time Trevor graduated from business school, Payton was wising up about his wardrobe and started asserting independence. This non-baseball-themed t-shirt was a big compromise for him on this special occasion. Everyone else was all decked out in Sunday best. Including Payton. Because this little boy was discovering that a t-shirt and shorts were plenty fancy for him. 
Big sigh.
I am 100 percent sure that Aunt Sophia would not care one bit what Payton wears to her funeral services. In fact, I can almost hear her now telling me to leave the boy alone and let him be. Let him wear what he wants to wear; dress clothes don’t matter; and get him a snack–that boy looks famished. Yes, I can hear it now.
One year ago today
Posted: May 13, 2011 Filed under: breast cancer, drugs, food, infection, kids, pets, Surgery, tennis | Tags: Bactrim, blog, breast cancer, cancer battle, cancer diagnosis, champagne, coconut cream pie, DIEP, dogs, family, hospital, Houston, infection, infectious disease, IV antibiotics, kids, kids dealing with mom's cancer, lymphedema, mastectomy, Methodist Hospital, microsurgery, minocycline, Moet, mycobacterium, nausea, new boobs, plastic surgeon, plastic surgery, post-mastectomy, reconstruction, recovery, stress, surgery, survivor, tennis 12 CommentsY’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.
An original piece
Posted: April 28, 2011 Filed under: breast cancer, drugs, infection, Surgery | Tags: blog, breast cancer, cancer battle, cancer diagnosis, Dr Seuss, infection, Jabba the Hutt, microsurgery, mycobacterium, new boobs, oral antibiotics, plastic surgeon, plastic surgery, reconstruction, TRAM flap 24 CommentsY’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
“My name’s Dr., madam, or just ‘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.”
Then he started it up. It whined and it cried
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.
Yes, they stood and they stared, never budging a whistle,
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.”
“WhatEVER,” I said, and I just rolled my eyes.
“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,
My faith in my future remains undiminished.
It’s my cancer-versary
Posted: April 27, 2011 Filed under: breast cancer, cancer fatigue, drugs, food, infection, kids, Surgery | Tags: baseball, breast cancer, cancer battle, cancer diagnosis, champagne, Couture for the Cause, DIEP, family, home health care, hospital, Houston, ICU, infection, infectious disease, IV antibiotics, kids, kids and cancer, life after cancer, Little League, loss, mastectomy, MD Anderson, Methodist Hospital, microsurgery, mockingbird, Mom, morphine, new boobs, plastic surgeon, plastic surgery, post-mastectomy, Race for the Cure, reconstruction, recovery, stress, surgery, survivor, Taylor Swift, tennis, the Big Dig, Tootsies Houston, Vancomycin, Willow Tree angels, wound care, wound vacuum 20 CommentsOne 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.
Preach it, GB Shaw
Posted: April 23, 2011 Filed under: breast cancer, literature | Tags: Antibiotics, cancer battle, cancer diagnosis, drug therapy, Fabian Society, George Bernard Shaw, infectious disease, Labour Party, London School of Economics, morning sickness, nausea, Oscar Wilde, post-mastectomy, probiotics. Dublin, recovery, survivor 2 CommentsEditor’s Note: There’s a glitch on WordPress that is hiding my hard returns, so this is one long post without the usual breaks in text to give the eye a rest. Apologies.
“The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.”— George Bernard Shaw
Love this quote. Love GB Shaw, too. Apparently he didn’t like the “George” and refused to use it, personally or professionally. That’s why I call him GB Shaw.
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Stop the ride: I want off!
Posted: March 25, 2011 Filed under: breast cancer, infection | Tags: blog, breast cancer, cancer battle, cancer diagnosis, DIEP, fortune teller, hospital, infection, karma wheel, mastectomy, microsurgery, MRSA, mycobacterium, needle aspiration, new boobs, plastic surgery, post-mastectomy, Rand McNally, reconstruction, recovery, Vancomycin, Zyvox 17 CommentsWas 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.
The Pink Underbelly 