Shut up about the small stuff
Posted: May 31, 2011 Filed under: breast cancer, kids | Tags: breast cancer, cancer battle, cancer diagnosis, Don't Sweat the Small Stuff, kids dealing with mom's cancer, post-mastectomy, psychological effects of cancer, PTSD, reconstruction, recovery, Richard Carlton, survivor 7 Comments
amazon.com
Remember the book Don’t Sweat the Small Stuff? I have a copy, somewhere. Or did at some point. I read it, too, thinking it would be good for someone like me: impatient, intolerant of idiots, and in turmoil over all that I couldn’t control.
The book was on the best-seller list for more than 2 years. Richard Carlson went on to write some 20 books in this series, from Don’t Sweat the Small Stuff in Love and Don’t Sweat the Small Stuff for Women. I think I had the original copy, and knowing me, might not have made it through the entire book. Too impatient for that.
I do recall a few ideas Carlson presented in the book, such as “live in the present” and “become more patient.” Not sure I managed either, since I’m always in a hurry, usually thinking about what needs to be done next, and am most definitely not patient. It’s hard to become “more” of something when you’re not really “any” of that thing.
“Life isn’t an emergency” is another one of Carlson’s anti-sweat-isms. I’m not even sure what that means, but I can tell you for certain that it does not apply to cancer patients. Life most certainly is an emergency when you’re dealing with diagnosis, research, treatment options, doctor’s visits, prescription drugs, mounting medical bills, surgery, hospitalizations, and the like.
Carlson also encouraged us to “get comfortable with the not knowing.” I feel pretty confident saying that this will never happen. Never. Ever. I most definitely will not get comfortable with not knowing what happens next, where this “journey” is going, or what the future holds. Hopefully Carlson took his own advice, as he died from “an illness” in 2006 at age 45. That’s 3 years older that I am now (well, I will be on Wednesday), and 45 is too young to die, IMHO.
I wonder if Carlson would have had the same attitude if he too had been facing cancer. Maybe he would have sweat for a little bit, then invoked his ant-sweat-isms to conquer all of the “small stuff” that invades ones life along with a diagnosis of cancer.
My blog friend Lauren wrote yet another stellar post about this very subject. Every time I read one of her blog posts, I’m hard-pressed to say which part I like most, which idea resonates the loudest, which anecdote finds me nodding my head in agreement, or which passage has the power to make me misty-eyed. This week, it’s this passage that stands out:
“There are no small things in cancer. There are no ridiculous things. People like to tell us not to sweat the small stuff, but there is no small stuff in cancer. There is no such thing as a small assault on our feelings/psyche. Sometimes, the tiniest pebble in our shoe is the one that will make us most weary; indeed, the smallest of stones can derail a train.”
I now feel as if I have permission to sweat the small stuff.
As if I needed anyone else’s permission.
A whole lot of the cancer thing is indeed big stuff. Not to imply that my “journey” is harder than anyone else’s, but I would respectfully submit that being young-ish with dependent kids at home makes for more sweat-worthy stuff along the way. Laura, another blog friend painted a vivid picture of battling cancer while raising young kids when she wondered how to hold back tears when her 6-year-old said, “I forget what you looked like before the cancer when you had long hair.” Tell me how to not sweat that. Please. It reminds me of my own struggle to remember what my mom looked like before cancer. I was 36 at the time. I still have to work to hear her real voice and not her “sick” voice, and I was a grown woman at the time of her battle. Laura also remarked upon the depression and guilt she felt as her 8-year-old son helped his little brother pack his lunch for school while she lay on the couch motionless. That makes me sweaty just reading about it.
Lauren also covered a topic in her post that I recently experienced myself. It involves Press ‘n Seal. 
You know, the stuff in your kitchen that you use to cover food.
While Press ‘n Seal has many domestic uses, it has a medical use too: covering one’s port while said port is slathered in numbing cream, before facing the 20-gauge needle used to puncture the skin and the port membrane to deliver drugs.
Last week I went for my regular port maintenance, in which I have to have the oncology nurses access the port (poke the big-ass needle through it) to flush it. This needs to be done every 4 to 6 weeks to avoid a blog clot. The port is tied into the jugular vein, remember, and I do not want to mess with that big dog.
Before my port maintenance, I use the numbing cream (when I remember) so the needle stick isn’t quite so traumatic. Needles have always been rather sweat-inducing for me. I don’t care what Richard Carlson would have told me, I have never liked needles and they’ve always given me that sweaty-palmed, slightly nauseated feeling.
The day of my most recent port maintenance, I was going from the gym to the oncologist’s office. I told my Runnin’ Buddy to remind me about halfway through to use the numbing cream. I was pretty proud of myself for remembering the cream and the Press ‘n Seal, along with a hypodermic needle from my stash at home and my teeny little vial of B12 that my sweet oncologist prescribed for me. I get a B12 shot once a month, and it was time. I figured since I’d be there, why not ask the oncology nurse to give me the jabful of B12?
Any shot at resuming normal life is gone, baby gone as soon as you realize you have prescription Lidocaine, B12, a needle, and Press ‘n Seal in your purse. Any attempt to seem like a normal person is duly shattered by that paraphernalia in one’s pocketbook.
So at the appointed time, I stood up against the wall of mirrors in the gym, pulled my shirt to the side and slapped a thick layer of cream on my port. Then I cut a small piece of Press ‘n Seal and covered the cream so it wouldn’t sploosh all over my shirt. While I finished my workout, the cream slid around a bit, and the Press ‘n Seal crinkled with each movement, and the curious onlookers were probably wondering what in the world they just witnessed.
Here’s what Lauren had to say about our ol’ friend Press ‘n Seal:
“In all my years of reading on PTSD and grief and trauma with breast cancer, not once have I seen a section on dealing with the emotional trauma of how dehumanizing it is to put Press N’ Seal on your body. Not once have I seen a section on how deeply humiliated you feel when you are made to walk half-naked through hallways on the way to an MRI, where then, in front of the room full of techs, you must disrobe and awkwardly lay on your stomach and hang your breasts through two holes in a plank. There is nothing in any book about how violating it feels having a breast written on in sharpie, and that the last time you see it in your life, it has a doctors intials on it. There is nothing in chapter 3 of any book that discusses the indignity of having our bodies being measured with trigonometry like a drafting project as we lay there naked, and get tattooed by nurses for radiation, especially when you are one who doesn’t like the thought of ink in your skin. There is nothing, nothing about the angst of a port sticking out of your body, or how impersonal it feels having your body lifted and shifted by nurses until you are lined up just right for radiation.”
I can’t speak to the parts about radiation, but on all the other stuff I say yep, that’s right. How strange it is when things like Press ‘n Seal on your body become part of your life. How sad when experiences like the ones Lauren describes become lasting memories, and not in the warm & fuzzy way. How terrible its is when you realize that there’s “nothing in any book about how to come to terms with the death of control over your body and life,” as Lauren so aptly puts it.
I’ve learned, just as Lauren and Laura and millions of other cancer patients have learned, that the small stuff becomes big stuff, and the death of control over our bodies and lives is just one of the many casualties in the “cancer journey.” The PTSD in one’s daily life also chips away at the idea of normalcy, signaling the death of innocence, the end of easy. It may or may not be well-documented, but it’s there. And as Lauren says, “Just because it is not said or written about, doesn’t make it less real. It does not make our feelings about many of these more ambiguous losses less valid, less deserving of mention. It does not make the trauma less valid, it does not make us whiners about small stuff.”
She notes that “we will suffer many more deaths on the cancer journey. Some by things taken from us, and some by things given/done to us. There will be a thousand deaths in cancer, and then a thousand more.”
And so I will indeed sweat the small stuff. Anytime I want.
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.
The Columnist
Posted: May 16, 2011 Filed under: breast cancer, food | Tags: blog, breast cancer, cancer battle, champagne, Don Julio 1942, El Tiempo, Jimmy Buffet, margaritas and Mexican food, mastectomy, Miller Light, post-mastectomy, Rupert Holmes, The Escape Pina Colada song, Time Magazine 6 CommentsI had hoped to write about this Saturday, before it began to seem like old news, but life conspired, and then this not-yet-old story was preempted by the sad news of my aunt’s death yesterday.
We need to focus on happier times, for sure.
Like this past Friday.
We gathered to celebrate the blessed birth of The Rajah.
Happy birthday, Rajah!
Some have asked me the significance of The Rajah’s nickname. He’s my fiercest opponent in Words with Friends. He’s the king of playing “qi” for a bazillion points. I fired back one time with the word rajah, which he promptly contested. The guy who rings me up by playing “qi” is balking at rajah. Priceless. Thus, my Runnin’ Buddy’s hubby will forever more be known as The Rajah. Just as his personalized golf towel says, The Rajah rules.
We commandeered the patio at El Tiempo Friday night for margaritas and fajitas and to celebrate The Rajah. A good time was had by all. The weather was beautiful and unseasonably mild, as it should be for The Rajah; the drinks were plentiful; the food delicious; and the company quite entertaining. It was a bit of a do-over for celebrating the Rajah; last year on his special day, I was a bit busy getting sliced & diced in the OR.
I made a few new friends and reconnected with some existing friends. (Don’t want to call the “old friends” because I was the oldest in the crowd. Boo hiss.) 
Pete, Amanda, and I shared more than a few laughs on the patio, and while The Rajah was holding court on the other end of the table, we made our own fun.
I was adamant that this celebration belonged to The Rajah alone, but my Runnin Buddy and Amanda conspired to carve out a bit of time to commemorate my 1-year anniversary of the mastectomy. Very thoughtful, girls. Thank you, thank you very much.
Happy cancer-free day to me!
My own cupcake, complete with pink-ribbon-style frosting and a gigantic gumball on top. How much I love that is hard to express. The little umbrella was compliments of my new friend Scott, who had explored the oh-so-manly joys of drinking a pina colada after golf that afternoon. He’s secure enough in his masculinity to have consumed another one, in between the Miller Lights, at El Tiempo. The Rajah cleverly switched Scott’s ringtone to The Pina Colada song, so every time Scott calls The Rajah, that fantastic and timeless song will play; it doesn’t get much better than that. I’d forgotten about the line in the song in which Rupert says “I am into champagne” so definitively. I have a new appreciation for that little ditty.
So what about the columnist? This, my friends, is where my Runnin Buddy tried to get me trouble, yet again. Just as she did recently at the Jimmy Buffet concert when she spun a quite-believable tale to an innocent bystander in the beer line about me being an on-air personality, she spun another tale at El Tiempo to another unsuspecting bystander.
The topic of this little blog came up, and Amanda’s husband Billie was uninitiated in all things Underbelly. Somehow he interpreted this little blog to be a column (any idea how that happened, Staci??), and innocent bystander Chad got the impression that this little blogger is actually a columnist for some publication called Time Magazine. Hmmmm.
To Chad, I hope you were so knee-deep in El Tiempo’s famously potent margs that you don’t recall being duped. That really wasn’t nice. On behalf of my Runnin Buddy, I apologize.
To Billie, I offer no apology but proof that you are indeed “column-worthy” and today is your lucky day because here you are, smack dab in the middle of the Columnist’s column. Hope you’re not too disturbed by the paparazzi that is sure to follow your mention in the column.
And BTW, Billie, hope you now know not to challenge me to drink a tequila shot. ‘Cause I’m gonna do it. But only if it’s Don Julio 1942, which as you learned Friday night, ain’t cheap!
Happy Birthday, Rajah! And congrats to Billie for becoming column-worthy. Hope it’s all you expected it to be, and maybe a little more. Kinda like a shot of Don Julio.
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.
I hate Mother’s Day
Posted: May 10, 2011 Filed under: breast cancer, kids | Tags: after5years.com, cafepress.com, cancer battle, carcinista.com, Dana Farber, funny t-shirts, hating Mother's Day, infection, invasive ductal carcinoma, Journeying Beyond Breast Cancer, lettersinheaven.com, loss, missing mom, mom died from cancer, mycobacterium, Nancy's Point, post-mastectomy, Rumi 8 CommentsI wasn’t going to blog about this, because I don’t want to sound like a broken record about how much I miss my mom. That’s a worn-out, overplayed, scratchy, non-Top-40 hit, for sure. It’s a sad song about gut-wrenching loss and about life going on despite the hole in my heart. You know that one person you always want to invite to the party, because they can talk to anyone, they bring a light & an energy into the room, and they become the most fun person there, regardless of the guest list?And because they come early to help set up, bring food, and stay late to clean up? That was her.
So I wasn’t going to write about her this year on my most-dreaded holiday. But then I remembered that blogging isn’t exactly a customer-service driven business. At least my little blog isn’t. It’s neither a business nor does it have customers. It’s my blog and I can write what I want to. So there. If I want to bitch & moan about missing my mom and hating Mother’s Day, I can and by golly I will.
googleimages.com
For the first year since my mom died, I wasn’t dreading Mother’s Day as much as I usually do. Usually, I feel a terrible tug between wanting to savor my kids and their homemade, heartfelt gifts yet feeling more inclined toward wishing the day would just end already. I despise the advertising blitz that leads up to Mother’s Day and think genuinely unkind thoughts about the merchants that hawk their wares in an effort to extract the maximum dollar amount from adult children filled with guilt about not doing enough to honor Mom. I’m usually envious of my friends who have to juggle their mom’s wishes for the day with their own. Even thought my day can be whatever I want it to be with no juggling required, I never feel that excitement that comes from being treasured, being pampered. The day always, always, always ends in crushing disappointment.
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But this year, I had resolved to do better. I was going to be better. I read several blogs written by members of the pink-ribbon sisterhood who also lost their sweet mamas to cancer. My blog buddy Lauren’s Mother’s Day entry in particular spoke to me. Her blog has led the way and shed much light for me as she is four years ahead of me in the “cancer journey” and the happily-ever-after life of a survivor with no mom of her own and 2 kids to raise. Reading this first thing on Mother’s Day this year reaffirmed my goal (stupid as it was) to enjoy the day. This line especially made me want to make it a good day:
“I am so thankful that I had her for a mom, however short a time it was. For how she loved and nurtured me to the tips of my toes, and for whose warmth I still feel surround me, especially when it is dark and it seems everyone else is gone.”
Yes, I still feel my mama’s warmth surround me, especially during the really rough times. Thanks, Lauren, for the reality check; you know I needed that, girl.
My decision to make it a good day, despite the hole in my heart, was affirmed by the supremely wonderful and true friends I have who know it’s a shitty day for me that never fails to disappoint. No less than 11 friends texted me Sunday morning, some to say “have a great day, I love you” and some to say “I know this is a hard day and I’m thinking of you,” and a few to remind me how lucky I am to be here, after waging an uncertain battle against not 1 but 2 vicious beasts. And a couple tried to make me cry (which is not easy to do) by telling me that my mom is proud of me and is thanking God, in person, for my triumph over cancer and mycobacterium.
Another blogger friend, also named Nancy, wrote poignantly about spending Mother’s Day without Mother. Like me, she spent last Mother’s Day trying to pretend everything was normal while staring down an uncertain future filled with tests, scans, surgery, and pathology reports. She writes:
“Even now, she would know things to say to make me feel better. She would be calling to see how I am doing. She would feel my pain and understand my fears, even if she had not had breast cancer herself. My mother would have understood about the ache I sometimes felt deep within and about the terror of facing life without breasts, or hair, or worse. She would have understood what it felt like to be a woman living on the edge unable to stop thoughts about dying from simmering during the wee hours of the night. She would have understood why I cried sometimes without even knowing the reason for my tears. She would not have cared if I was irritable, blotchy-faced or just plain unpleasant to be around. She would not have thought such things were even odd. She would have loved me and understood because that’s what mothers do.”
Yes, indeed that is what mothers do.
Marie writes a super-informative blog called Journeying Beyond Breast Cancer. Her mum is still on this Earth, but suffering from dementia, so Marie understands how hard Mother’s Day is. Her beautifully written entryabout the painful topic resonated with me and reminded me that our mums don’t have to be gone to leave us feeling empty. Marie’s quoting of Persian poet Rumi made me smile: “Wake at dawn with a winged heart and give thanks for another day of loving.”
oliverose.com
I’m trying, Rumi, I’m really trying.
Another blog I love, “dear mom can you get letters in heaven?” is written by a young woman who lost her mom to ovarian cancer. Her take on Mother’s Day is so sweet and so heartfelt that it’s almost painful to read, but her outlook save it from being too sad to bear. Like me, she usually hates every minute of Mother’s Day, but this year came to the realization that her mom is happy, and that sustains her. Sami writes something that I feel so deeply, and I’m grateful to her for putting it into words. The weird dichotomy of feeling grateful to have had an awesome mom while still feeling so very, very sad that she’s gone:
“It’s just so bittersweet. I feel lucky to have known you, and I always will, but there’s that part of me that will just remain sad. I’m sad that I will never buy you another sappy Mother’s Day card or cheesy gift; I’m sad that I will slowly forget exactly how your voice sounded; I’m sad that you never got the chance to be one of those cool moms on Facebook, or own an iPhone, or watch the season finale of Survivor (and the new season too– you would love it!)”
I too fear that I will forget the sound of my mom’s voice. It’s easy to recall her “sick voice” and the way she sounded while being ravaged by uterine cancer, but I really have to work hard to remember her regular voice. And that’s a shame because she had a great, big laugh that made the world a better place, just by hearing it. I love but also hate that Sami mourns her mom missing out on Facebook, an iPhone, and Survivor. I could make a long list of similar, everyday things that I hate having my mom miss out on.
One last blog round-up, and this one breaks my heart into a million pieces. It’s the Carcinista, a blogger I just recently “met” and got to know via our blogs. She was smart and snarky and brutally honest about how she felt going through the ups & downs of ovarian cancer. All the things I aspire to be in my little blog, she was. And I say “was” because smart, snarky, honest Sarah died last week after deciding to stop her treatment.
carcinista.com
She chose quality time with her husband and 2 boys over the certainty of feeling awful and the uncertainty of whether treatment was working, and I admire her for that terribly difficult decision. Even toward the end, when she saw the writing on the wall, she didn’t lose her sense of humor, and she faced the most-unhappy ending with courage and her trademark mission to “wear something cute and make each day count.” She referred to Dana Farber as The Cancer Factory, and I remember laughing out loud at her recounting a terrible visit to TCF in which she was so sick she vomited up her blueberry yogurt, but said “I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. Rockstar.” RIP, Sarah. Your humor and balls-out approach to cancer will be greatly missed.
This year, I tried. I tried to not hate Mother’s Day. I tried to enjoy it, for my sake, my mom’s sake, my kids’ sake. We spent a nice day by the pool with lots of champagne and yummy food, in the presence of 2 of my dearest friends, 2 of my all-time favorite people. I had such high hopes, such great expectations. But in the end, I should have just given up and worn this t-shirt:
cafepress.com
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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Journey
Posted: April 20, 2011 Filed under: breast cancer, drugs, menopause | Tags: Boston, cancer battle, cancer is not a gift, cancer milestones, champagne, China, Cost Plus World Market, cross-body bag, DIEP, gauze dressing, Gulf Coast, infection, Journey, Lao Tzu, lost tooth, Napa, pity party, port-a-cath, post-mastectomy, reconstruction, recovery, Sarah Palin irritates, summer in Houston, survivor, Taoism, the Big Dig, Vancomycin, Vera Bradely 6 CommentsIf you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.
“Hold on to that feeeeeeeeling….”
Yes, we are simple creatures at times, and prone to even simpler suggestion.
As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.
Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.
Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my mind frame.
I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.
That’s why this phrase spoke to me:
It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.
The saying spoke to me because I know that Lao Tzu is right. He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.
Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.
I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.
I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.
I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.
I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.
Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.
While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.
Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry. 
When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.
And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.
Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.
There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.
I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.
So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.
This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.
Saturday in Napa
Posted: April 18, 2011 Filed under: breast cancer, food | Tags: bloody mary, Bottega Napa, breast cancer, cancer battle, champagne, Franciscan, Mumm, post-mastectomy, Quixote, reconstruction, recovery, Stag's Leap, survivor, turning 40, V Sattui, wine, wine tasting 1 CommentYes, I know we’ve been home a week already, but I needed to think about how to best convey the utter perfection of our second day in Napa, and these things take time to percolate. Plus, the hustle & bustle of real life intervened, so there’s been a mountain of laundry, baseball games, homework, and errands aplenty since our return from the Golden State. Then there were some humorous interruptions, like Payton’s poker face (or utter lack thereof) and a couple of doctor appointments forcing themselves to the head of the blogging queue. Couple all of that with the arrival of our dear friends from Boston for their semi-annual visit, and you get a better idea of why this little blog has been neglected. Never fear, it is back to business now.
I’m not quite ready to let go of the Napa trip. So much of what I blog about is yucky stuff–cancer, infection, surgeries, drug therapy, and assorted pain & suffering–so when I have a lovely topic, like a trip to Napa, I’m gonna milk it for all its worth. Then maybe milk it some more.
If I still write about the trip and continue to post pictures, it lives on in the forefront of my memory and isn’t yet consigned to the dusty, slideshow status of trips gone by, and it doesn’t quite get crowded out by the workaday stuff that has to get done around here to keep this household running. Our long weekend in Napa to celebrate one of my BFF’s entries into the “Over 40 Club” was the stuff that legends are made of (at least in my mind). It was a celebration of Yvonne’s 40 years on this Earth, and for me, a smaller celebration of life finally, at long last, returning to some semblance of normal after a long, unpleasant, bumpy ride.
Which brings us to Saturday, Day Two in Napa. Friday, Day One in Napa, had been what I thought was the perfect day in Wine Country, but Saturday was even better.
Before I get into the nitty-gritty details, let me share two of my favorite photos from the preceding days. 
This one is from Thursday afternoon at the Franciscan in San Francisco, before we left the Bay City for Wine Country. It’s a fave because The Birthday Girl had arrived to start the party-filled weekend, because we’re surrounded by great wine & yummy food, and because it was a harbinger of all the fun times to come. We were still waiting on the rest of our crew to arrive, but we went ahead and got the party started.
This was at Silver Oak on Friday, where we met the infamous Walter, who will live forever in our memories of Napa. In fact, if I recall correctly, the infamous Walter took this very photo. Just after this photo, we moved on from Silver Oak to Quintessa, and the day just kept getting better and better.
But back to Saturday. The day began with mimosas and a bloody mary to toast The Birthday Girl at breakfast. I mentioned before that this was the best-ever bloody mary, and I stand by that claim. Wish I had one right now. But I’m drying out, so that would be inappropriate.
After breakfast Saturday morning, we grabbed to-go cups and hustled outside to meet our ride and the rest of our merry party. While these aren’t exactly Texas-sized to-go cups (or “roaders” as we like to call a drink on the go), they certainly were tasty and really, who needs a Big Gulp when you’re off to taste a hundred wines in one of the best places on Earth? As delicious and festive as those bloody marys were, I’m glad I wasn’t confronted with the dilemma of having a refill to say no to; that would have been tricky.
We were off to Quixote, my favorite of all the wineries we visited. Suffice to say that if our trip had ended after the visit to Quixote, I would have been satisfied. The fact that it didn’t was icing on the cake. Or an extra olive in the bloody mary. I will write about Quixote soon; need to sort through the photos and do it justice. For now, know that it was phenomenal in every way.
None of us really wanted to leave Quixote, and once we were ready to shove off, we were delayed a bit while our driver borrowed a toolbox from Quixote to remove the limo seats to retrieve a fallen iPad. Once that was done and we packed into the car, we headed to Mumm, on the suggestion of Robert, our tour guide at Quixote. He did not lead us astray. 
Like all of the wineries we visited, Mumm is gorgeous. Stunning views and beautiful flowers everywhere. And the champagne–did I mention that? My favorite drink, being produced in plentitude. Ahhhh. Happy girl.
We hadn’t scheduled an appointment, and Mumm was bustling and busy on that beautiful Saturday, so we each ordered a glass off the tasting menu and strolled the grounds.
I’m not sure where I was in this shot, but hopefully I had a glass in my hand. I might have been in the restroom, checking out the great quotes on the walls, like this one from Bette Davis:
And this one from economist John Maynard Keynes:
Or I might have been mesmerized by this display in the gift shop:
Also in the gift shop was a small shrine to Carlos Santana, who we had seen the previous day at Silver Oak. He’s a regular around there, and Mumm had a signed guitar, a couple pieces of Santana-inspired artwork, and his own vintage of bubbly.
The patio at Mumm was beautiful, overlooking the vista of the vineyard. The weather was perfect, with blue skies, abundant sunshine, and cool breezes. 
There’s also a small art gallery at Mumm, with rotating exhibits. The day we were there it featured black & white photos of “then & now” shots of all sorts of people. Siblings as kids then as grown-ups. Mamas holding babies, then grandmas holding their generation’s next generation. Cool.
After Mumm, we headed back to V Sattui for picnic provisions and ate a quick lunch before our appointment at Stag’s Leap.
The wines at Stag’s Leap were not my favorite. In fact, of the 7 tastings they poured, I didn’t finish any of them. It was still a lot of fun, and being in the tasting room while the rest of the visitors milled around the common area was nice. We had a place to sit while we dissected the wine, and a chance to catch our breath before moving on. 
With our visits to Quixote, Mumm, and Stag’s Leap, we were done with tastings for the day and headed back to our hotels to get ready for dinner at Bottega. Just in case the day hadn’t been perfect enough, we still had a fantastic dinner to look forward to. Rest assured that dinner lived up to its expectations. Being at the chef’s table toasting The Birthday Girl with wines chosen from our tour will forever be one of my all-time favorite things.
The day was indeed perfect. Every bit of it was just plain perfect. Each winery we visited offered something different, and while Quixote was my favorite, by a lot, I enjoyed the others, too. And as if the wine wasn’t good enough, there was the uninterrupted time with great friends, gorgeous scenery and beautiful weather, and for me, freedom from cancer and its messy aftermath. Now that’s a great day.
The Pink Underbelly 