My other life

Posted: June 6, 2011 | Author: | Filed under: breast cancer, literature | Tags: , , , , , , , , , , , , , , , , | 5 Comments

One of the many blogs I read is a fine one published by a lovely woman named Marie in Ireland. It’s called Journeying Beyond Breast Cancer, and Marie’s goal via her blog is to provide some guidance on how to navigate the “post-treatment limbo” that cancer survivors find themselves in once “it” is all “over.” There’s plenty of information out there for those who’ve recently been diagnosed and for those who are actively in treatment, but not much out there for the “what next?” portion of the “cancer journey.” I was honored to be a guest blogger on Marie’s site in February, and I always come away from Marie’s blog feeling enlightened and empowered. (And really, I’m not just sucking up because she’s giving away a copy of Sheryl Crow’s new cookbook, which I really, really, really want. I mean it. Marie’s blog is fantastic.)

Marie posed a challenge to her blog community to write a post about our “other” lives, about who we are when we’re not fighting cancer. We cancer-chicks who blog tend to know a lot of intimate details about each other, as is the nature of the beast we all have in common, but we don’t always know a lot about each other besides the beast.

Never one to back away from a challenge, I ruminated on my B.C. (before cancer) life. It took me awhile to remember, so wrapped up have I been in the cancer-vixen lifestyle. I racked my brain to recall what it was that I used to do with myself absent multiple doctor’s visits, endless testing, countless trips to the pharmacy, and hours of feeling yucky.

It was a perfectly ordinary life. I’m not one for a lot of drama; I’ve been to high school, and don’t have any desire to replay it. I have no patience for grown-up “mean girls” and so have a tight circle of true friends. We live an ordinary suburban life, most of us at home during the day, having forgone careers to raise kids, although several of my besties do work outside the home and do amazing things like crude trading and nursing. Ok, I’d better clarify: one friend trades crude oil, and another is a nurse. Since this blog is usually about all things boob-related, I don’t want to give the impression that I’m talking about crude nursing, as in off-color breastfeeding.

So my life was pretty ordinary, pre-cancer.  Ordinary, but good.

I left my editing job 12 years ago, when Payton was born, to become a full-time mommy, and after Macy joined the herd my workload doubled but so did my heart. As my kids got older and started school, my life took on the pattern of theirs and I volunteered at their school a lot while also spending some time doing my own thing. I walked that fine line between being a full-time mom but still being my own person. Like millions of other moms at home raising young kids, I packed my kids’ lunches while doing laundry and tried in vain to keep up with the household chores. I stole some time from the domestic hustle & bustle every day to go to the gym or play tennis, and made my to-do list while waiting in the carpool line.

My pre-cancer schedule was pretty full of ordinary things: kids’ dentist appointments, play-dates, sports, lessons, and parties. I served on the PTA board, was a tenured room mom, and worked the school book fair every year. Shortly after my mom died I was at the book fair, surrounded by books and overcome with loss. I missed my mom so much; she was an avid reader and we always talked about the latest stack of books on our nightstands. I met another mom who was volunteering that day. Jenny was new to our school, having recently relocated to Sugar Land. We chatted about books, and she shared with me that her dad had recently died, and she was swamped by grief, too. I decided then and there to start a book club, and to invite her to join me. Instead of allowing my sadness to rule, I wanted to find a way to diffuse it.

I had no idea at that time that Jenny was a breast cancer survivor and would become my mentor and tour guide through the “cancer journey.”

Meeting Jenny was an extraordinary event in my ordinary, pre-cancer life. Along with my Runnin’ Buddy and our nurse practitioner friend Laura, Jenny and I comprise a quartet of book-lovers who meet once a month and discuss the book we’ve read. Five years later, we’re still going strong. We’ve read some amazing books as well as a few clunkers, and are constantly on the look-out for the next great read.

When I first started running the book club, I would research book group discussion questions and print out a list for each of us. Over time, I’ve gotten lazy and now just highlight an interesting passage, a particularly pivotal plot point, or a bit of prose that speaks to me for whatever reason. This is the basis for our book club’s discussions nowadays.

I’ve always loved books, for their ability to transport us to other worlds. The written word is precious to me, and I suppose it’s in my genes; my mom was an English teacher, after all. I chose my college major (journalism) based on the right ratio of the least amount of math & science and the maximum amount of literature. My career in publishing and editing surprised no one, and I continued to read copiously after leaving the industries for motherhood. True, most of what I read was written for the preschool crowd with a heavy emphasis on pictures, but I started building my kids’ libraries long before they could read. I suppose it was perfectly natural for me to start a book club.

Just in case you’re wondering if I sit around and read all day when I’m not fighting cancer, the answer is no. I spend as much time as humanly possible playing tennis, then I sit around and read for what’s left of the day.

Ha!

National Cancer Survivors Day

Posted: June 5, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , , | 9 Comments

Well, we have Mother’s Day and Father’s Day, Grandparents’ Day, and even Bosses’ Day for pete’s sake, so why not Cancer Survivors Day? Makes perfect sense, as there are millions of us around the world. I do wonder, though, why there’s no apostrophe in the title. I double-checked it on the NCSD website and sure enough, no apostrophe.

It’s today, by the way — I feel like I should wear a shirt that says “Kiss Me, I Survived Cancer” but I’m not really the kissy type. I guess I could wear my “cupcakes” t-shirt, which I love, but then it seems like my “cupcakes” get the credit for kicking cancer to the curb when really, they were the culprit in the first place. Without them, I never would have had breast cancer, so I’m not giving them the credit for having survived it. I will wear it to the gym, though, because I love the look on people’s faces as they read it, then do a not-so-subtle double-take at my chest.

So what is National Cancer Survivors Day all about, anyway? Probably something a little more meaningful than wearing a snarky t-shirt and giggling to myself as the shockwaves from said shirt ripple through the gym. According to the NCSD website,

“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.”

Well, I’m certainly proud to be part of an annual, treasured worldwide celebration of life. Although I think I missed the parade. Considering how many people are affected by cancer, you’d think this day would get a bit more press. There’s probably a Lifetime for Women movie about it and I missed that too.

As usual, I have lots of questions about this annual, treasured worldwide celebration of life. Who qualifies as a survivor? And when does survivorship begin? What time was the parade? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. I think it’s perhaps a bit more personal than that. I also think it’s more than just surviving cancer. I also survived a nasty infection and a nearly  year-long regime of some pretty bad-ass antibiotics. I survived a complicated and intense reconstruction process, and I survived yet another long, hard recovery.

I considered myself a survivor as soon as my mastectomy was over. Surgically removing the tumors, and thereby the cancer, from my body was when my status changed from “regular person” to “survivor.” So for me, I became a survivor in the late afternoon of May 13, 2010. Although I certainly didn’t feel like much of a survivor at the time, bandaged and battered, stitched up and sore. Moving my body at all was a seemingly unattainable feat, and raising my arms high enough to put chap stick on my lips was definitely unattainable. I wasn’t able to slick my own lips for a day or so.

At the time, I had no concept of what a double mastectomy truly meant or looked like. So focused was I on ridding the cancer that I gave zero thought to the aftereffects of the surgery. Even now, in the hazy afterglow of just one year’s time, I struggle to remember exactly what I looked like after that first surgery. In fact, when Trevor gave me The SCAR Project book for my birthday a few days ago, I looked at the portraits of mastectomied women and asked, were my scars vertical or horizontal? For a brief moment, I couldn’t remember. (They were vertical, BTW.)

Deborah Lattimore

That’s why I’m so grateful for things like The SCAR Project and for women like Deborah Lattimore. Like the women who were photographed for The SCAR Project, Deborah Lattimore didn’t want to forget what she looked like after being mastectomied. This defines a survivor, IMHO: facing a shitty situation with not just courage but with moxie. Reading Deborah’s blog, I’m so impressed and moved and in awe of her take-no-prisoners attitude. I immediately felt a kinship with her as I read what she wrote about her post-cancer silhouette soon after her bilateral mastectomy: “my body is still ‘re-architecturalizing’ and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!” Cheers to Deborah on this annual, treasured worldwide celebration of life. Wish I could tell her happy National Cancer Survivors Day to her face, and to bask in the supreme power of a strong, confident, self-assured woman who tells cancer to bugger off then shows the world the true face of a survivor. No padded bras, no prostheses here. Not that there’s anything wrong with padded bras or cutlets. How we face the world post-mastectomy is an immensely personal decision, and I in no way want to imply judgement on how any woman makes that decision. For me personally, I applaud women like Deborah who celebrate their mastectomied bodies and view them as a badge of honor. In our breast-obsessed culture, this is no easy thing.

So happy National Cancer Survivors to everyone. I’m thinking we should all have cake. What kind of cake is appropriate for NCSD? Something festive, for sure (you know how I love celebrations). This one is nice:

Love the colors, but the pink butterfly kinda creeps me out.

Maybe this one, then:

Nah, I’m not much of a cat person, and it’s not a birthday cake I’m after, although I do love the idea of the cat eating a fish-shaped cake. Maybe we survivors should eat a tumor-shaped cake. Ewww, gross. Never mind.

Ok, so something breast-cancer related:

Or not. Definitely not.

This one is pretty, and the lemon filling looks yummy:

This one is hilarious, although not appropriate for the annual, treasured worldwide celebration of life:

Maybe something from this bakery:

Surely they’d have just the right kind of cake for the annual, treasured worldwide celebration of life. Something like this, perhaps?

It’s nice to be important

Posted: June 4, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , | 3 Comments

Yes, I’m still celebrating my birthday. When I showed up for my scar-tissue-management appointment to see Tammy, my favorite lymphedema specialist, she and Janice had decorated the office for me! I saw the Happy Birthday banner on the front door and wondered if my timing  was out of whack, because Janice had her birthday in February and Tammy’s is at the end of the summer. Imagine my surprise when the decorations were for me!

Confetti on the massage bed! Balloons and streamers! Even some strategically-placed decorations on the shelf above the bed, so that as I’m lying down for treatment, I see festiveness. 

Tammy insisted she get a picture of me lying on the confetti. I love that you can see her, in her white top, in the mirror behind me. She’s something else.

Tammy, me, Janice

One of the pleasant things to come from this “cancer journey” is the relationships formed with health-care providers. Tammy & Janice fall into the category. Hell, they define this category. When I first met them post-mastectomy, minus some lymph nodes and worried about how their absence would affect my tennis game, these two ladies took me under their wing and provided the balm to my battered soul that comes from pure human kindness. We’ve gotten to know each other very well over the last year, and they’ve become not only providers but also friends. So yes, the birthday celebration continues, and I will continue to ride the b-day train as long as humanly possible. Once my liver says “uncle,” I’m out. But until then, rock on.

Even with all the birthday revelry, I didn’t want to get too far away from my latest visit to Dr S. I’ve been so busy celebrating my birthday that I almost forgot to report on my visit to my all-time favorite surgeon in the Entire World. I saw him the day before the celebrating began, so I’d better tell ya about it now before the details become entirely too fuzzy to relate.

Well, the details of the visit aren’t as important as the fact that he and I have made some major, major break-through progress. As you loyal readers know, Dr S & I have gone round & round on a few things in the past, and we’ve had some pretty good arguments. The Turf Wars continue to amuse me.  But at the end of the appointment, with the exception of one hellacious visit last summer involving Sucky during which he almost saw me cry, we part on friendly terms and hold a lot of fondness for each other in our hearts.

So what was the progress, you may ask? When he told me to pull my pants down, so he could look at my belly scar, he said please.

Yes, you read that right:  he said please. All of his own volition. Without being prompted. Without the Mexican stand-off that usually occurs when he wants me to comply but I refuse until he shows me some manners. A little wining & dining before we get down to it, if you will.

That is some major progress. You may remember the time in which I asked him to say please and he replied that he doesn’t have to say please because he is the doctor (cue the fanfare music here). I pretty much laughed in his face and said he may be the doctor, but I am the patient (cue the even louder fanfare music here) and I will not do what he’s asked until he asks nicely.

I reminded him of one of the tenets of my growing-up years: It’s nice to be important, but it’s important to be nice. 

I’m pretty sure he really liked that one, a lot.

Next stop for the birthday train: happy hour — my favorite time of day.

cheers!

A gathering of dear friends, some yummy food, and a well-stocked ice bucket makes for one happy birthday girl. Thad & Yvonne always throw a great party, and last night was no exception. We toasted with a Mumm rose, and broke out the beautiful orange box so the Widow could join the party. She’s always the star of the show.

Luckily, she plays well with others, and it’s not a one-woman show. There’s the Mumm and the ubiquitous Piper, along with the Prisoner. 

Quite a nice grouping for the birthday happy hour. The food was delish, as it always is at Chez McLemore. Yvonne’s tableside guacamole would be at home at any of the finer Mexican restaurants in our neck of the woods. Keith & Jill’s deconstructed Greek salad crostini made my heart happy and made my tummy say “thank you!” The hand-made tortillas and grilled shrimp added the last dash of supreme bliss that enveloped our patio happy hour. The fruit crostada was bursting with blueberries and anchored with peaches, all the while surrounded by a buttery, flakey, turbinado-sugared crust. 

But the very best part of an overall-exceptional evening was this: being surrounded by friends who make every meal a feast.

The day after

Posted: June 2, 2011 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , | 7 Comments

The day after one’s birthday can be a let-down, but I’ve got enough festive spirit to carry me right on through. Needless to say, yesterday was one of the best days ever. Big kudos to Trevor for orchestrating a fantastic day. This one is going down in the record-books as the most festive birthday celebration ever.

Yes, I wore a tiara, and yes, that’s a glass in one hand and a bottle of Veuve Clicquot in the other. At the nail salon. What of it? Doesn’t everyone do that on their birthday?

Having that beautiful orange box make an appearance at my party not once but twice was pretty great. Happy birthday to me!

I’m laughing so hard here because the first cork that popped hit the ceiling and scared the nail techs. I guess they don’t have a lot of champagne corks being popped as they prepare to buff & polish clients’  nails.

I’m sad to say that not one photo was taken at my birthday lunch, but picture this: a group of smiling, laughing ladies gathered around a festive table while pitchers (plural) of frozen margaritas are passed. Glasses clink, some with salt and some without, in a toast to great friends, good food, and enduring health.

Meanwhile, a kind senorita whips up a batch of fresh guacamole tableside, adding just the right amount of cilantro, jalapenos, lime juice and kosher salt (but no onions–don’t like em). Custom-made, tableside guac is one of the finer things in life. A big thank you to Mr Reyes, GM at Escalante’s, for the complimentary guac and queso for my party. Abundio knows how to treat the ladies!

Handmade Mexican food just kept coming as the conversation (and margaritas) flowed. Get a group of women together to eat, drink, talk & laugh and you know it’s going to get a little wild. We kept it in check but certainly had a stellar time.

Meanwhile, on the penultimate day of school, Macy received the classroom award for “Most Helpful,” which doesn’t surprise me one bit. School’s out today, which means my kids are now 4th and 7th graders. Let the summer fun begin!

thanks, Carla, for the photo!

Happy birthday to me!

Posted: June 1, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , | 12 Comments

Today’s my day.

All mine.

Happy birthday to me. 

It’s been pointed out to me that in addition to being my birthday, today is the official start of hurricane season. Coincidences are funny.

 

Birthdays were a big deal in my house when I was a kid. There was lots of celebration, and we always had homemade cake, decorated by my sweet Aunt Margie, my mom’s younger sister, who was diabetic but still made her Nanny Po a fancy cake every year. See, when I was a little kid, I couldn’t say my whole name: Nancy Katapodis. That was a mouthful for a little girl. The best I could manage was Nanny Po. Aunt Margie always called me that, even after I’d grown up. Dadgummit if pancreatic cancer didn’t strike her down 14 years ago. If she were here, she’d be making me the Barbie bowl cake right now, with lots and lots of frosting, and calling me Nanny Po. 

I don’t mind one bit that I’m growing older. Not one little bit. I might have B.C. (Before Cancer) but not now. There’s something so very sweet about coming out on the other side of a hellacious battle against a vicious beast and its equally nasty side-kick. Breast cancer and mycobacterium stole a lot from me, but they will not steal my birthday joy. Pre-B.C., I might have fretted about being on the wrong side of 40, about the crow’s feet and the less-than-smooth skin. But not anymore.

I’m planning to savor every second of my birthday. Growing older means I’m alive. I’m here to celebrate another year. I’m thrilled to bits to be 42 today.

I really hope that this year is better than last.

Not to tempt fate, but it can hardly be worse.

This time last year, I was recovering from a bilateral mastectomy. Ouch. Look at that chest — flat enough to play quarters upon if you wished.

Once cancer came to call,  I realized that each birthday is much more than the day of one’s birth; it’s another year of victory. It’s another year of walking upright as opposed to being tethered to a hospital bed. Triumphant and upright yet still scarred, I learned first-hand the Chinese proverb:

“The appearance of a disease is swift as an arrow; its disappearance slow like a thread.”

True, so true.

The utter suckiness of last year and the swiftly-appearing disease that is breast cancer, while totally sucky, taught me a lot. One of the big lessons, while completely corny, is to enjoy each day.

And today, on the day of my birth, I intend to do just that.

Let’s start at the very beginning; a very fine place to start, as Frauline Maria would say in The Sound of Music.

I don’t have a lot of baby pictures of myself. Those are still at my parents’ house; my mom kept a lot of pictures and a detailed baby book. Like everything else, she did the historical record-keeping of my life very well. In fact, I think most of my school pictures are hanging in the hallway at the old homestead.

I do have these pics, though, and will embarrass myself by sharing.

No idea whose parents owned the magical mystery bus that we decorated for cheer competition, but it was looking pretty festive. Oh, how I loved this particular cheer uniform. It was my favorite, and I hated to have to wear the other ones. I betcha it’s still in my parents’ attic. My mom never threw anything away. It may be moth-eaten and tattered, but I bet it’s still there. 

I’m almost afraid to post any pics of my lovely self from college, because my bangs were so big they’d take up this whole screen. Go ahead and laugh. I’m right in the middle, surrounded by ’80s bangs.

After college, my first real job was editing Usborne children’s books that were written in England but sold in the U.S. My job was to “Americanize” the books, i.e., change “biscuit” to “cookie,” etc. To this day, I have a hard time deciding if  the word “grey” is spelled with the “e” or an “a.” It looks more right to me as grey. Ditto “colour” vs “color.” It was a super fun job and when I had to leave, to move to Austin so Trevor could start grad school at the mighty University of Texas (HOOK ‘EM!!), my going-away party looked like this:

Randall White, the company president, and I cooked up a little show in which he pretended to insult me, and I shoved a piece of cake in his face. No one else was in on the joke, so it was a bit shocking. No wonder I have such a problem with authority, if Randall taught me these kinds of hi-jinks at my very first job.

Fast-forward through my next editing job, for Harcourt Brace, in Austin, and onto my next career: that of a mom.

Baby Payton got me out of the 9-to-5 lifestyle and into that of a full-time mommy. Keeping up with a hungry baby’s schedule and later chasing after a busy toddler made me wish I had an office to go to again, but only on some days.

Until Baby Macy arrived. 

Then I really wished I had an office to go to again!

Little did I know that chasing two kids around all day every day would be the adventure of a lifetime. 

Being responsible for the care & feeding — not to mention the character-molding — of two small kids was a big responsibility. Luckily, I had a great mentor. Just wish she’d have stuck around to help get me through my little darlings’ teenage years.

Raising my kids to love each other, enjoy each other’s company,

appreciate family ties,

savor family time,

exercise self-sufficiency,

and sit still for a photo shoot are important to me.

May not be all that important to them, but it’s my day, right?

Knowing that my kids are happy, healthy & safe is a great birthday gift. Knowing that they are pursuing their passions is the icing on the cake.

Watching my boy pursue his true love (baseball) is pretty great. It reminds me a lot of my childhood, in which I spent a whole lot of time at the ball fields watching my brother and shagging fly balls. Sharing an unabashed love of the Red Sox with my boy is one of my life’s true joys.

The day Macy met Mo Willems stands out as one of the all-time best. He was so entertaining, and we love his books so much. When it was Macy’s turn to visit with him, she told him she likes to write, too. Instead of asking him some goofy question, she asked for his phone number. In parting, he told her be sure to not let Pigeon drive the bus. She replied: “As if!” I predict those two will collaborate one day. 

On the day of my birth, I’ve been thinking a lot about the things that make me happy. Like my family (everyone says that, right? Unless you’re on Maury Povich, you say that).

Like my doggies. Maddy, sweet Maddy. My first dog as a grown-up. I saw her being born, and will never forget the shock of how easily the pups just slipped right out from their mama, the polar opposite of all the pushing, sweating & grunting I’d seen of births depicted on TV. Sweet Maddy entered the world easily and wormed her way into my heart. 6 pups were in her litter: 3 black, 2 blond, and 1 white. Everyone who came to look at those pups wanted the white one. But she was mine. I loved that dog all the way to the Moon and back. When she died just shy of her 15th birthday, my heart broke into a million little pieces. 

She was the best dog, and a really good sport. I guarantee she didn’t want to wear bunny ears — she was much too smart & sophisticated for that — but because her girl asked it of her, she complied. Sweet old thing.

My dogs bring me a lot of happiness. A lot of  dog hair, but happiness, too. Harry and Pedey make me smile every single day.

The day we picked out Harry from the Houston Humane Society, I swear he was smiling. And that made me smile.

Later, of course, we learned it’s because he’s insane. They don’t always tell you that at the Humane Society.

Pedey’s not crazy, but he is a weasel. A weasel who makes me smile. Who wouldn’t love a dog who wants to help with the chores?

Then there are the side-kicks. Harry & Pedey’s best friends, Sugar & Snoopy. Having 4 dogs around creates quite a ruckus, and I love it. 

Raising my kids with an all-consuming love for dogs is a very good thing for me. Little kids and puppies make me smile.

Appreciating traditions makes me happy, too. This one is a classic. Seeing my kids straddling the state line between Massachusetts and New Hampshire on our annual family vacation makes my heart sing. 

As does spending time with my tennis girls. Oh, how I love that. If I weren’t planning to drink so much champagne today, I’d have to get out on the court. Going to tennis camp and playing nonstop for an entire weekend was one of the best things ever. I need a re-do! Come on, girls — get your racquets and let’s go. 

It’s been a crazy year, for sure. When they say it’s all down hill after 40, they really mean it! Going from 40 to 41 brought more than the usual changes for me. But I’m on a roll now.

There’s been the influx of new friends

And the stability of old friends.

The past year brought me the finer points of home-health care and wound care–what a joy it is to not need either anymore!

Being 41 and a fledgling cancer survivor taught me to strut my stuff, both at the Couture for the Cause and every day.

As I strut my way into 42, I’ll hold my head high and my glass even higher. This is indeed a year for celebration.

Cheers to a cancer-free birthday! Cheers to the rest of my life!

 

 

Shut up about the small stuff

Posted: May 31, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , | 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.

What not to buy me for my birthday

Posted: May 27, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , , | 14 Comments

If you’re still searching for the exact perfect gift for my upcoming birthday, here’s a tip: don’t buy this.

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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.


I live now

Posted: May 26, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , , , | 11 Comments

“With the past I have nothing to do; nor with the future. I live now.” — Ralph Waldo Emerson

I live now.

Yes indeed.

I’m digging that quote. Today, as most days, I woke up and stole a few minutes before hitting the ground running. I like to check my email first thing in the morning, and see what’s what before I start my day. I have several cancerbabes in blogland whose musings I follow. I don’t know any of these women personally, but we share a commonality that is cancer, and that tends to make friends from strangers faster than anything, including hard liquor.

One of my cancerbabe friends posted some really, really good news on her blog today, and it was the first thing I read this fine morning. Long story short she’s a 28-year-old dealing with Hodgkin Lymphoma who left her home on the East Coast to spend some time in my lovely H-town at MD Anderson to endure a grueling clinical trial.

Sounds pretty awful, right? As most cancers are, whether big or small, early- or late-stage. Cancer is just plain awful. But my cancerbabe blogger friend had good news to share about her just plain awful cancer: the clinical trial worked and she’s in partial remission.

Hooray & hallelujah!

Another strike against the many-faceted and much-dreaded disease that is cancer.

I read the rest of my emails with a smile on my face, and as I hauled myself out of bed, that smile stayed with me.  I believe in celebrating every little bit of good news that comes our way, especially when dealing with the dreaded C. Nope, I’m not opening champagne at this early hour, before even getting my little darlings out of bed, preparing their breakfasts, making their lunches and seeing them off to school. Thought about it, but resisted. I’ve learned the hard way that bad things happen to good people, and to counteract that hard truth by celebrating all the good things that come along. Sometimes with champagne, but sometimes not.

It’s easy to get caught up in all the bad things about cancer. And believe you me, there are many, many bad things. Watching my sweet, vivacious, and much-beloved mama be eaten alive, literally, by uterine cancer was horrific. Knowing that I would have to live the rest of my life without hearing her big belly laugh, without her all-knowing guidance in raising my own kids was b-a-d bad. Seeing her ravaged body become ever more frail day by day left me wondering how much worse could it possibly get. Because as bad as it is, there’s always more. My BFF Ed tried to tell me that. He knew, from watching his dad die of pancreatic cancer. I didn’t want to believe him, and childishly clung to the idea that it was as bad as it could possibly be. But it wasn’t, and no matter how hard one “fights,” once cancer gains a stronghold, it’s devastating. No matter how much one wants to win the “battle,” there’s no guarantee.

If anyone on this Earth deserved to win her “battle” it was my sweet mama. Her own mama died when she was 13, leaving her to raise her younger sister, who my mama had to work hard to forgive for usurping her “I’m the baby” spot in the family line-up. They lived on a farm and life was hard. She was the only one of her 4 siblings to graduate from college, and she did it in 3 years.Barb's necklace She was president of her sorority, which is how she scored this fetching necklace, and I’m sure she bossed her sorority sisters into next week. Determined to make her mark in the world, she became a teacher, and did it well. She married into a tight-knit Greek family who didn’t necessarily welcome “foreigners,” but she won them over. Every last one of them. Even the stubborn, crotchety old ones. She raised two kids in a most-loving and uber-secure environment. Everything she did, she did it well and with such love & warmth that people were drawn to her. She made this world a better place.

Yet, after a multi-year, multi-stage “battle,” cancer claimed her as its own. Not fair. Not by a long shot. But fairness has nothing to do with winning the “battle” against cancer. So much of it is luck and circumstance. So much of it is out of our control. That’s a tough pill to swallow for a Type A bossypants like me.

And that’s exactly why I live now.

Cancer steals so much from us. Big things: health (duh), time, innocence, body parts, hair, self-esteem, a good night’s sleep, healthy body image, money, freedom, time, faith, security. Small things: major wardrobe issues, range of motion in yoga class, being able to look in a mirror without wincing, missing important events, becoming fearful instead of being carefree.

The past is gone, and no matter how hard you may try, you ain’t gettin it back. You can’t change it. The future? Good luck with that one. My theory is you gotta work hard, bear down, be the person you most want to be, and hope for the best. Hope that you’ll avoid the evil lottery that decides who will be stricken with cancer. Keep on living a good life and doing all the right things (antioxidants, splurges in moderation, wholesome foods, regular check-ups and exercise, blah blah blah) but don’t for one second expect those things to earn you a free pass. Because cancer strikes no matter what.

So I live now.

These boots…

Posted: May 25, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , | 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.

Blog-worthy

Posted: May 24, 2011 | Author: | Filed under: breast cancer, food | Tags: , , , , , , , , , , , | 6 Comments

Remember the episode of Seinfeld in which Elaine faces a shortage of contraceptive sponges and has to evaluate all of her male suitors to determine whether they’re “sponge worthy?”

So is the task of this blogger. It’s been called to my attention that some people consider themselves “blog-worthy” and are not getting the press they deserve. I hope you’re reading this from Malaysia, Pete Keating. As Elaine said on the infamous sponge-worthy episode, “Run down your case for me again.”

As much as I like the idea of a gladiator-type battle to determine who among my circle of friends gets mentioned in this little blog, it’s not very practical. I am, however, open to bribes and prefer my Piper Sonoma to be brut.

The Rajah knows how that system works. In his invitation to Sunday Funday at the Martinez casa, he texted me this photo: 

A little something for me, and a little something for Trevor. The Rajah knows what his guests like. He’s hospitable like that.

So Pete, you don’t have to spring for the Veuve Clicquot to be considered blog-worthy. (But I wouldn’t complain if you did.)

I’m so glad the reverend Howard Camping’s prophesy was wrong. If the world had ended on Saturday, May 21st, as Camping predicted, I would not have had a chance to sip that lovely bubbly on Sunday, and that would have been a crying shame. Seems Camping made a mathematical error again, as he did in his 1994 prophesy. He says he didn’t have the dates “worked out as accurately as I could have” on the most recent prediction. Whew.

I’m really glad he had his dates wrong again this time. I would have hated to miss out on this scrumptious soup from the Orin Swift wine dinner at Aura last night. Chef outdid himself on this one: 

Yep, that’s a halved coconut serving as a soup bowl. It contained the most delectable concoction of Thai-spiced soup with a lobster dumpling, seen peeking out of the bottom edge of the soup. There was much debate at our table about what the wagon-wheel looking garnish was. Zucchini and cucumber were thrown out as possibilities, although I was suspicious of being able to fry a cucumber. Too much water, I’d think; the oil would sizzle and splatter all over the place. I can’t recall if it was Raymond or Marissa who suggested zucchini, and I think it was Trevor who threw out the cucumber. Keith had it right, as usual, with the winning answer: lotus root. Go figure.

I’m so glad Camping had his dates mixed up again and I lived long enough to eat that soup. Seems the real date for the apocalypse is October 21st. So get your affairs in order, people. You’ve got 5 months to prove whether you’re blog- worthy. And here’s a little note for Howard Camping:

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