Redux

Posted: November 9, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , | 3 Comments

I was mindlessly folding clean laundry this morning and remembered something from the beginning of my cancer “journey” that was so funny it warrants an encore. From my Caring Bridge journal, the precursor to this little blog, on Friday, May 26, 2010. To set the scene: Macy and I were at the ballpark, walking from the parking lot to the field for one of Payton’s baseball games. I was just shy of the 2-week mark since my bilateral mastectomy, and this was one of my first outings that didn’t involve a doctor’s appointment. My chest was flat as a board, but I didn’t care because the cancer was gone.

As we walked up to the field, Macy said totally out of the blue: “Mom — did they do something to your chi-chis? Because they look all shrunken.” My mind was racing at this point because #1, I have NO idea where this is going, and #2, I thought I’d explained the surgery to my  kids. I have yet to find a parenting book or video that guides me through moments like these. So I told her yes, they did do something to my chi-chis: they cut them off! That’s what the surgery was all about. Then she says, “Well, are they going to fix them? Because they’re not looking so good.”

From the mouths of babes.

CANCER SUCKS

Posted: October 20, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 8 Comments

Cancer is so not fair.

It just sucks.

It’s such a bitch.

I hate it.

One badly timed comment; one errant remark.

That’s all it takes to go from normal to an emotional wreck. Suddenly I’m on the verge of tears–in front of other people, which is awful, and in front of one person I’d rather take a beating than cry in front of. Pride is a terrible burden sometimes.

Just one comment.

All was going according to plan at my pre-op appointment until one little utterance, slightly misinformed on the doctor’s part and hugely misinterpreted on mine, sent it all akimbo.

I was ready for this next revision. Six days and counting. Schedules rearranged, favors called in, sacrifices made…again.

I had signed up for this revision and was willing to go along with it quite voluntarily, even though it meant more pain and downtime and missing out on some important stuff. Well, important to me anyway: the annual Halloween tennis tournament at our club, which my runnin’ buddy and I won last year and hoped to recapture this year. The rest of the tennis season, for which I’ve only played 2 matches total for the entire season (and lost both, BTW, so suck it, everyone). Our regular Sunday morning match & beer-drinking with our buds Christy and John. Lots of tennis will not be played by me while I recover, yet again from yet another revision. The last-minute Halloween rituals, in which costumes are finalized and trick-or-treat dates are secured. All of this will be superseded by yet another recovery. The everyday, average tasks and duties of a regular life. All put on hold, in pursuit of a normalcy that seems ever elusive, just out of reach.

All I want is symmetry and improved shape to my newly created breasts.

Is that really so much to ask?

I’m well past the point of buying into the BS of “Bummer about the cancer but at least you get new boobs.” That dangling carrot didn’t quite pan out for me. Thanks to the ol’ post-mastectomy infection and a much-more-complicated-than-expected reconstruction known as The Big Dig, the prize at the finish line of my cancer “journey” isn’t much of a prize at all. It’s more a reminder that no matter how skilled the surgeon, no matter how many versions of revision I endure, my body is never going to be the same. It’s never going to look like it did before cancer shat all over my head at the ripe old age of 41.

I’m not stupid. I don’t expect my body to look like it did pre-cancer. I don’t expect my life to be carefree and manageable like it was pre-cancer. But I really didn’t think it would be this bad, this hard. I really didn’t think it would be so bloody difficult to deal with the reality of cancer day in and day out.

Sure wish someone would have warned me.

Because I bought into the “get through the scariest, worst experience ever and you’ll live happily ever after.” And silly me, I thought I was dealing with all the repercussions of the post-cancer life.  I’ve faced the ugliness head-on. I’ve tucked my head and kept on truckin’. I’ve plastered a smile on my face and counted my blessings. I’ve poured out my feelings — good and bad — in an effort to “deal with it.” I’ve done the research and shown up for all the required appointments. I’ve endured more poking, prodding, and pinching. I’ve suffered through humiliations large and small. I’ve managed the pain and the crazy emotions. I’ve found myself smack-dab in the hell that is chemically-induced menopause and lived to tell about it. I’ve made a point to take my medicine, literally and figuratively, even when it tasted like poison and burned my insides to a crisp. I’ve learned to accept that schedules don’t matter to cancer, that there is no way to predict or prepare for the twists & turns that comprise this cancer “journey.”

I thought I was dealing with it all, and dealing with it quite well.

Silly, silly me.

Thank you, google images. 

Pink party!

Posted: October 8, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 8 Comments

The only thing missing from this party was my cancer.

HA!

It was a great party (especially since the cancer — and its nasty friend mycobacterium — were nowhere to be found). Last year I had one foot in the grave and had a very small party to thank my friends who’d helped me in ways large and small through the most difficult experience I’d endured. The ways in which they helped were as varied as they are: a math teacher, a PE teacher, a realtor, a crude oil buyer, a builder’s sales &  marketing guru, a former hair stylist, a psychotherapist, a transplant nurse, a budding photographer, an HVAC business owner, a surgeon-wrangler, and several kick-ass SAHMs.

1st annual Pink Party! girls

This year, the infection is gone, the antibiotics are history, and the party is on, baby! The rules were the same this year: wear pink, eat, and drink. And celebrate life. Really celebrate life.

Last year, I felt pretty rotten, and wasn’t much in a party mood. It had been a long, miserable summer, and the misery dragged into the fall (or what passes for fall in south Texas). Who would have thought that facing cancer and having a bilateral mastectomy would be the “easy” part compared to the post-surgery infection? Now I know that the battlefield is treacherous, and the presence and comfort of good friends go a long way.

Things were certainly much brighter this year.

I’d had a bad week, though, leading up to this year’s Pink Party. A really bad week. The last few days were emotionally charged, big time. Drama on the tennis court, histrionics from a stranger blogger, and mean girls at play in my social circle sucked up more time and energy than I realized. Factor in an early-dismissal day from school on Thursday, and this party girl was running behind schedule.

Frazzled and scrambling (and more than a little pissed off at all the drama), I got my party prep done by the skin of my teeth. A custom piece of artwork rolled out the pink carpet for my guests (thanks, David!).

The well-dressed flamingo started happy hour before the guests donned my door. 

Some pink bling for the front door, and the entrance is all set. 

Don’t forget to read the plant tag!

Having a party gave me the motivation I needed to revive my sagging, heat-stroked flowerpots, too. We need some mulch, but there was no time for that. Get the plants in the pots and move on. The ladies will be here soon! I’m oh so grateful to my superstar gardener. Thank you, Eduardo!

Flowers on the outside, flowers on the inside.

Pink gerbera daisies and blush baby carnations on the kitchen table…

…and pink roses on the side table. Halloween decor mingled with all things pink is kinda weird, but the eyeball candle reminded me of the mycobacterium that disrupted my life so mightily and completely last year, and it provided a nice dose of reality to my pink plans.

Macy added the chalkboard sign…

…and Christy provided the other sign. Love it!True, so true! Pink’s not about Komen at my house, it’s about the party!

Once the feather boa goes up on the chandelier, it’s time to start the party!

And a close-up of the Hope angle floating just under the boa.

Her message was echoed by the sign on top of the fridge.

Another boas and some sparkly butterflies over the kitchen table.The paper lanterns were new this year.  Next year, we’ll light them.

I’m just sick that I didn’t take any pictures of the food this year. Once my girls started arriving and the drinks started flowing, I completely forgot. Let’s rewind to last year’s food and pretend. 

The menu was pretty similar this year: mostly pink foods. Salad with roasted beets, peel & eat shrimp, smoked salmon with capers, hot crab dip, strawberries & raspberries, and pink-ribbon sugar cookies with pink frosting. Oh, and the Corn Thing. Can’t have a party without the Corn Thing. It’s not pink, but it’s on the menu anyway. 

The corn thing (in the mostly empty dish) is always the first thing to go.

The other thing I completely forgot to do this year was give a toast. I wrote a few words about each party guest and had planned to tap my glass to shush the scintillating conversations and deliver the toast. Completely forgot.

Could this have had something to do with it?

Maybe.

A little.

We had a most excellent bartender.

Ok, girls, here ya go:

Amy H: you have led by example and taught me how to give from the heart, and to give what people truly need. You always seem to know just the right thing to say, like the dog whisperer, only for people. No one can wrangle Dr S like you!

Amy P: the abundance of food you delivered to my doorstep sustained both my body and my soul. Knowing that a good meal was right around the corner was such a relief, and it allowed my addled brain to focus on things like wounds and puss. Your nursing expertise was a huge help as well, and I’m grateful for the late-night house calls.

Christy: you went from “my babysitter’s mom” to “my friend” in one giant leap. You walk the walk and are the epitome of “it’s just what you do” and are the one person who cusses as much as I do. I appreciate so much your unflinching honesty and your endless compassion, to people and animals. My life is so much better with you in it.

Claudine: Through your diagnosis, I have come to understand the overwhelming desire to try and ease the patient’s burden. I’m honored to be in the trenches with you.

Jenny: you’re the trail-blazer and my mentor in all things survivor. You lifted me up each time you sent me a card and each time you reminded me that “this is temporary.” You have provided a stellar example of how to live a rich and full life after cancer. Can’t wait to be celebrating my 12 years of survivorship, like you, my friend! And many more.

Jill: you have a knack for making all the right gestures and for making all the right things happen. Whether sharing a meal or raising a glass, time spent with you is always a rich reward.

Julie: my wacky friend, I love knowing that no joke is too raunchy, no comment too catty to utter in front of you. What freedom to be exactly who I am — the good, bad and the ugly — with you and know that you love me just for being Nancy K.

Laura: no one else can talk me into giving up so many hugs. Each time you took time out of your insanely busy schedule to check on me, I was reminded of what a loyal and special friend you are. And a special thanks for all the electronic medical advice you provide…whether via text or email, I know you’ll send me the right answer.

Mary: you make it seem so simple to give freely and unconditionally, and every time I’ve asked you for something, you’ve not only said yes, but you’ve agreed with a huge heart. To know that you have my back, whether for carpool or child-care, is such a comfort.

Melanie: you reached out and seized upon my hair emergency. Offering to take care of my hair at home while I was healing is something I’ll never forget. By figuring out exactly what I needed, you taught me that accepting help from others isn’t just ok, it’s pretty great and mutually beneficial.

Melissa: When we first met, when P and H were in kindergarten, I knew I wanted to be your friend. Your wit and style were (and still are) so appealing, and I enjoy every minute I spend with you. You’re a pretty kick-ass lizard-sitter, too!

Michelle: My champagne sister! What a beautiful thing to find someone who is always looking for a reason to pop that cork. Not only do I love drinking bubbly with you, I also really like to stand next to you. Dynamite truly does come in small packages, my friend.

Nicole: your carefree spirit reminds me how vital it is to enjoy life and to not sweat the small stuff. My type-A self basks in your laissez-faire attitude and I aspire to live life with gusto, just like you.

Sharon: your visits were always perfectly timed: just when I needed a pick-me-up, you would appear on my doorstep. I’ve learned a lot from you, in Chinatown and on the tennis court.

Staci: from Day 1, you kept me grounded. I knew that if I needed to go off the rails, you’d get me back on track and charm everyone we met along the way. You taught me how to grease the wheels and to take time to talk, really talk, to the people who come into our lives. And somehow, all these years later, you & I always have something to talk about.

Yvonne: as my in-house counsel, you remind me regularly that it’s ok to feel what I feel and think what I think. You bring a calming presence to my calamitous life, and your good sense and fun-loving ways always make me smile. Just when I am feeling adrift, you call saying “I miss you!” and that makes my heart happy.

I’m already looking forward to the 3rd annual Pink Party, and I’m smiling really big at the idea of us still gathering every year in October when we’re old and grey. Hopefully by then, breast cancer will be a thing of the past — but the party will go on!

This may get me in trouble

Posted: October 4, 2011 | Author: | Filed under: baseball, breast cancer | Tags: , , , , , , , , | 11 Comments

I’ll probably get in trouble for this. Or at least be on the receiving end of a cacophony of “You shouldn’t have done that” and “Did you have to?” and “That really wasn’t necessary.” But that’s ok; I rather like living my life on the edge. I’ve been known to stir the pot, to not let sleeping dogs lie, and to eschew the leaving of well enough alone.

So here I go.

This post is all about Ed.

He’s going to hate it.

See, Ed is not one for calling a lot of attention to himself. Or any attention, really. But sometimes, like ripping off a Band-Aid, it’s gotta be done.

He deserves it. It’s his birthday, so today it will be all about him.

Ed’s been our best family friend for a long, long time. In fact, it’s been so long, he’s dropped the “friend” and moved right on into “family.” Sometimes family has nothing to do with blood and genes and trees, and everything to do with the contents of one’s hearts and the meshing of like-minded souls. Assuming souls have minds, that is. I don’t think they operate on auto-pilot, do they?

I met Ed while toiling away in the publishing biz many moons ago in Austin. He and Trevor were in grad school at UT (Hook ‘Em!) at the same time, but we didn’t know each other during school; he was reading thick, musty books in the history department while Trevor built up his brain and hung with the geek squad in the computer science world. I hate to think of the years we wasted not knowing each other during that time, but our livers certainly breathe a sigh of relief. There was a fair bit of drinking going on in those days (as opposed to now, when kids’ schedules, middle age, and the threat of recurring cancer tempers my tippling). We did make up for some lost time, though, once we met; happy hours at Trudy’s with multiple Mexican Martinis and extra olives, watermelon margaritas at Maneul’s on South Congress, beers on the roof deck at Waterloo Ice House; and the infamous wine tasting club run by our resident oenophile Anthony King. I hope I never forget the carefree youthful nights spent lifting a glass, enjoying our youth & freedom. None of us will ever forget Trevor puking in the rose bushes at one of the Hess brothers’ houses, then coming back for more. Good times.

But back to work…Ed wrote and I edited. His hair was long back then (mine was too), and he labored over every word, every sentence, every TEKS standard (see how far we go back — long before the TAKS and now the STAR state standardized tests for public schools). I learned real quick that he was smart. Really smart. And he really cared about his work. He had such a high standard for himself that sometimes, just once in a while and not really very often (!), he made me wait for his work. I really don’t like waiting.

See, there was a progression to creation of a textbook, and we were both cogs in the wheel. Schedules were made, which we had to follow. Deadlines were enforced, because if our book wasn’t ready to go to print–back in the day before e-books and widespread Internet use — another publisher would get our spot and the book would be delayed. And we would all be fired. So I learned pretty quick with Ed that some tough love was necessary. I schooled him in the “good enough is good enough” principle that editors must embrace in order to keep the line moving. Oh, how that boy labored over every word, every sentence, every standard. There were days when I was a hair’s breath away from snatching the copy right out of his hands so that I could get my red pen all over it and keep the line moving.

It’s probably no surprise that Ed left publishing and took a rather circuitous route to teaching. A heart-wrenching detour to care for an ailing parent, work for an educational non-profit that trained teachers, a foray into self-employment in the handyman biz, a little time off to determine the color of his parachute (tricky when you’re a little bit color-blind), and finally, he was home.

Ed has a job that not many people would take on: he teaches kids who’ve been sent to the alternative school. Reasons for being sent there vary from fighting to drug use to crimes both petty and serious. The classes are small in number but large in ramifications. Several years ago, when Ed was contemplating whether to enter the teaching profession, I told him that he would be the kind of teacher who made a difference in kids’ lives. It sounds hokey but it’s true: he’s the sort of teacher who kids will remember always, and they’ll look back and say, “Man, Mr C really cared.” It’s true, and he does. He guides kids that a lot of people would cast aside as lost causes. He listens and becomes the sole person who cares. It’s no surprise to me that kids who pass through his class come back to visit, bring him a homemade Christmas treat, and mail him an invitation to their graduation ceremonies.

Those kids are not the only people who benefit from Ed’s unique brand of caring. After enduring the rigors and heartache of watching his dad die of pancreatic cancer, he became my sherpa when my mom got sick. I’ll always remember him telling me that if I thought it was bad now, it was gonna get worse. A lot worse. He was right. It was awful.

My mom knew Ed well, and when she moved in with me after retiring and moving away from Houston, it was Ed — not me — who she wanted as her caregiver for the icky parts of her cancer battle. She wanted him to sit through the class at MD Anderson on how to care for a PICC line, not me. I didn’t know it at the time, but she was trying to shield me from the routine horrors that make up a cancer patient’s life. When she was too frail and weak to step into my deep bathtub, it was Ed she asked for help. She would rather have had him see her in that state, to spare me from the eternal impression of being able to count each rib in her battle-weary, wasted body. It was Ed who she requested, not me. He made many food runs in the maddening game of “What can we get her to eat?” only to see her take 2 bites and be done. So much for that. But he never got frustrated, he never pressured her to eat. It was Ed who bore the brunt of the fallout from her radiated bowels. And that’s all I’m going to say about that.

It takes a special kind of person to volunteer for such service, but that’s just the kind of person he is. My mom knew it, and so do I. Ed’s the kind of guy who sets up the ladder and willingly allows grafitti in his garage. No project is too big, no mess too messy.

He’s the kind of guy who doesn’t freak when a little kid pukes on his brand-new couch, which Macy (right) did just after this photo was taken at Ed’s house in DC.

He’s the kind of guy who gives a little kid his watch to wear while patience runs short and naptime runs on by during sight-seeing in DC. He knows how to make a little kid feel like the most important person in the world. 

He knows how to keep a little kid quiet during a long, boring grad-school graduation ceremony, and he thinks anytime is the right time for a junky snack.

He digs the deepest sand-pit every year at Salisbury Beach every year, even when he’d rather be reading his book, and waves off the old-man critics who pass by and warn of the pit’s collapse and threat of said pit swallowing little kids whole. He knows what he’s doing.

He’s the creator of Halloween costumes too far-out for my brain to imagine.

He knew Maddy, the best dog on Earth. Ever. In the history of dogs. He loved her with his whole heart, and finally gave in to my years-long pestering that he needed a dog of his own. Not once, but twice. And he let my kids name both dogs. Hence, a female chocolate lab named Snoopy, and a wily basenji-mix named Sugar.

We have Ed to thank for the Red Sox fever that exists in our lives. A native Mass-hole, Ed is a Sox fan for life, and he taught Payton the joys and heartbreak that is Red Sox nation. When Payton was four years old, at his first trip to Fenway, Ed showed his devious side when he made Pay think that Nomar Garciaparra hit a foul ball right into Payton’s lap. Eight years later, I think Pay still believes it really happened.

When Macy came along, a new bond was forged, and the strength of that bond sometimes startles and always amazes me. Mrs Dally, Macy’s first-grade teacher, told me in confidence one day that I might want to be careful because Macy told the class, during an exercise about friends, that her best friend is a 42-year-old man. In the case of anyone but Ed, this might raise a few eyebrows. But spend two minutes with him and you get it. In third grade, Macy filled out the “getting to know you” questionnaire from the teacher on the first day of school. For the question about  her best friend’s favorite activity, Macy wrote: landscaping. Those two are tight. 

Happy birthday, Ed. May the day be as fantastic, wonderful, and all-out-awesome as you are.

Welcome to funk-ville, population 1

Posted: September 27, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 10 Comments

If you’re looking for a laugh or an inspirational story, you’ve come to the wrong place. I’m in a funk and there’s no amount of lipstick that’ll pretty up this pig (the funk, not me). My thoughts are scattered like leaves falling off a tree (if only that conjured up visions of the russet colors of fall, of leaves parachuting off of trees as they ready themselves for the change of season. That does happen in some parts of the world, but here, in the land of eternal summer, and in this infernal record-breaking, never-ending summer, the only leaves falling from the trees are brown and crackly, dead from the drought. How’s that for a cheery thought?).

I’ve been struggling the last few days. I’m frustrated with the pace of the healing from the latest surgery–yes, I’m a whole lot better, but I want to be done. I’m madder than a wet hen about the effect of the last surgery on my tennis game, and wonder if I’ll ever get my serve back. I’m worn out from the swirling, worrying thoughts of whether I’ll ever have the results I want. I’m both impatient for and dreading the next round of revision. I’m tired of being tired. I’m pissy about the fact that I’m still battered and sore. I’m ready to rip the port right out from under my skin because it catches on my clothes and shoots a sick sensation up my neck that reminds me the damn thing is sewn into my jugular vein. Oh, and it looks weird, too. I’m sick of cancer and all its many fallouts.

Normally, my solution to such a funk is alcohol. Lots of alcohol. Every night is ladies’ night when the funk shows up at my house. But there’s a niggling voice in the back of my head reminding me that alcohol is a major contributor to breast cancer, both initially and in terms of recurrence. And since not a day goes by that I don’t think about recurrence, perhaps I should avoid using alcohol as a balm for my beat-up soul. Dammit. Yet another way cancer has wreaked havoc in my world. If I can’t in good conscience comfort myself with booze, I’m in real trouble. This is no fun.

When I was diagnosed last year, Dr Dempsey gave me a stack of play money. She handed it to me and said it is very important currency. Each “dollar” bill was a free pass to be in a funk. To throw a fit. To have a pity party. As she put it, “to lay in bed watching Lifetime and eating ice cream.” I laughed and thought, pfffft! I won’t need that. I got this. Me and my positive attitude can kick this cancer no sweat. 

While I am happy to report I’ve spent not one day in bed watching Lifetime and eating ice cream since cancer shat upon my head, I’m thinking I may need to pull out one of those dollars. How crazy is that — after all the crap I’ve been through, after seeming like I was finally getting close to the finish line, now I fall into the funk?

Don’t worry, I’ve already run through all the reasons I have to be happy: I’m alive, the worst is behind me, I’m not in the hospital, I have neither drains nor a wound vac attached to me, I’m cleared for exercise, I have great doctors and comprehensive insurance, I have a stellar support network, blah blah blah. Yes, all of that is true, and I know in my heart of hearts that there really is more good than bad  in my life. I know that one day this whole “cancer journey” will be a speck of dust in my rearview mirror as I travel along the grand highway of a happy life. But right now, the funk rules.

Those of you who are within shouting distance have been hearing about it. The frustration, the impatience, the pissy-ness. What you won’t hear, though, is “Why me?” because really, does it matter why? Not so much. What matters is how ya sweep up the mess that’s dumped on ya, and most days I’m armed and ready with the broom & dustpan. But for now, I’m frustrated, impatient, and pissy. And mad. I’m mad, too.

I’m mad that this damned cancer “journey” has to be so hard for so long. I’m all for rolling up my sleeves, gritting my teeth and getting through it. I fully support Winston Churchill’s idea of “If you’re going through hell, keep going.” I believe Eleanor Roosevelt 100 percent when she said “A woman is like a tea bag — you never know how strong she is until she gets in hot water.” I gather strength from Robert Frost telling me “The best way out is always through.” But geez, does it really have to be this arduous? The ways in which cancer robs us are seemingly endless, and breast cancer in particular is a repeat offender, a pathological thief.

I just read this article, “What’s It Really Like to Live Through Breast Cancer?” Today especially, I needed to hear other women’s stories. Valerie, age 52, said that “she needed symmetry. She needed things to be as they should. She needed, after two years of surrendering to the opinions of doctors and the input of the cancer Web, to have an ounce of control over her body.” Yeah, me too.

Renee, age 47, said that “when I had her mastectomy sutures taken out, I asked the surgeon to remove the Sharpie mark she’d made—the black line that went across my ribs like a big smile—and the surgeon asked what line? I pointed. Her eyes got big and she said, ‘That’s your incision, Renee. We opened up your body. We removed a lot of tissue.’ ”

There are lots of Valeries and Renees out there. One in eight women will be diagnosed with this dreaded disease in the United States alone. Worldwide, there are 1.3 million new breast cancer diagnoses a year. That’s more than a million women who will endure this disease. Of them, some 465,000 will die from it. But even those who survive it, like me, will carry the weight of the disease. The physical scars Renee spoke of are nothing compared to the emotional ones. People say we’re lucky that our cancer occurs in a body part that can be removed. True, but it also means that we see evidence of that cancer every day; if I had a kidney removed, I wouldn’t be confronted by the railroad tracks of a long, harrowing journey every time I undress.

Sure, it’s better to be scarred than dead. No question. But being alive doesn’t mean I have to be happy all the time. It doesn’t mean I won’t get in a funk and be frustrated, impatient, pissy, and mad sometimes.

But the funk will pass, hopefully sooner rather than later. Like in Carl Sandburg’s beautiful little poem, the funk, which can come in like a herd of elephants or on “little cat feet,” will overlook my city “on silent haunches,” and then move on outta here.

(thanks to google images for making it so easy to pretty up my blog today)

Pink ribbon club, celebrity style

Posted: September 13, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , | 9 Comments

NBC Chief Foreign Affairs Correspondent Andrea Mitchell is the latest public figure to share the dreaded news with the world: she’s been diagnosed with breast cancer. She announced her diagnosis and her “terrific prognosis” on the air last week.

Mitchell no doubt shocked her viewers when she said, “I had planned to be hiking in Wyoming last week, but instead discovered that I am now among the one in eight women in this country–incredibly, one in eight–who have had breast cancer.”

She seemed to stumble a bit on the words “who have had breast cancer,” perhaps because the news is relatively new for her and like most people who receive such a shocking diagnosis, her brain was still working hard to process the reality.

I’m not going to comment on the verbage she chose and my objection to the past-tense idea that she had breast cancer. My Cancerchick blogger friends have covered it more succinctly than I could, and while I think Mitchell is a little kookoo for assuming her cancer “journey” is over so soon after it began, one thing I’ve learned on my own long, involved “journey” is not to judge a fellow Cancerchick. Just as I learned firsthand that no one has a right to tell anyone else how to grieve (and if you try it, I will punch you in the brain), I believe that every Cancerchick has the right to conduct her “journey” however she sees fit.

Some of us are loud & proud with the disease and want everyone to know about every twist, turn, and detour on the “journey.” Some are guardedly private and keep everything quiet. Some go kicking and screaming into the OR, radiation suite, and infusion room. Some arm themselves with all the latest research and become fonts of useful information for other Cancerchicks. It’s very personal, and as varied as cancer’s victims are, so too are their responses to it.

I admit that as much as I hate to hear about one more woman joining the pink ribbon club, part of me feels a little less than compassionate toward Mitchell and her diagnosis. She’s 64 years old — more than 20 years older than I was when diagnosed. As far as I can tell, she has no kids — and if she does, they’re old enough to understand this breast cancer mess. I’m pretty sure she’s not juggling homework and the care & feeding of young kids while also battling the beast.

As for Mitchell’s other plans, to be hiking instead of hearing words that will forever change her life, I have one piece of advice: get used to it. As the sage John Lennon said, “Life is what happens while we’re busing making other plans,” and cancer has a crafty and crappy way of infringing on those plans.

Me, I was busy living an ordinary suburban life, packing lunches, driving carpool, and running my kids to baseball and tennis when I wasn’t on the tennis court myself. I admit I had no aspirations to hike in Wyoming. I’d spent many an hour volunteering at our elementary school and was contemplating other ways to give back to my community. A perfectly ordinary life, some days better than others but most filled with laughter, good friends, and happy times.

Once cancer picked me in the great genetic lottery, much of that perfectly ordinary life changed. All of my brain power was rerouted to disseminating this terrible information, researching options, facing the hard truths, and making a plan to conquer this vicious beast. I started a Caring Bridge journal to keep my friends & family informed, and remember writing this one week after my diagnosis:

“Today the exhaustion has set in, and the strain of keeping up with my regular life and taking on this new job of facing cancer has hit me hard. Nothing a cold bottle of Piper Sonoma can’t fix, but I truly feel like I’ve been hit by a truck. I’m fixin’ to get into my jammies and climb into bed. Today is one week to the day of diagnosis, and it feels like I’ve run a marathon. Maybe two.”

I hope Andrea Mitchell has a good pair of running shoes. Even in her caught-it-early optimism about the battle that is breast cancer, even with “a terrific prognosis,” the race is long. I do hope that Mitchell is correct in her prediction and that she’s able to get rid of her cancer “in one fowl swoop” as my sweet friend Paula’s 12-year-old son Boyd said about my cancer. But I also hope she knows that in this cancer “journey” there are lots of twists & turns along with many, many detours that test one’s patience, zaps one’s strength, exhaust one’s resources, maim one’s body, and stress one to the max.

The penguin and the polar bear

Posted: September 2, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 8 Comments

Someone very nice sent me a card with this message a while back. I enjoyed the simplicity of the words: matter-of-fact and purposeful without being overly froufy or cheesy. I wasn’t familiar with Mary Anne Radmacher but liked her message enough to find out if she was someone with whom I should be familiar.

She and I have something in common: we love words. On her website, she says: “i have a history of fascination with words, starting from a very young age. my writing reflects philosophies inherent to my being. these include: a commitment to passionate, intentional living; valuing wellness; and embracing the moment.” (she also writes in all lower-case letter, like one of my favorite poets, e.e. cummings.)

I was afraid she was going to get all touchy-feely on me — something I really don’t like, but she reigned it in. I’m so glad. Because I really like her statement on courage, and it’s something I’ve been thinking about a lot lately during recovery mode. This last surgery was harder than I expected, and the recovery has been way more arduous than I imagined. Knowing that this surgery isn’t the last one is rough as well, but I’m trying to be a brave little soldier.

I’ve always equated courage with bravery. To me they go hand-in-hand and seem like very good friends, and they also seem like something one is born with but can develop. Being diagnosed with cancer at a young-ish age is a challenge that draws on all of one’s resources, and courage is at the top of that list. During this “cancer journey” I’ve had a lot of people say things like “You’re so strong,” and “I don’t know how you do this,” and “I’m not sure I could do it.” While I’m very appreciative of the support, being strong or being able to “do this” isn’t for me an acquired skill or a specific endeavour. It comes down to a very simple fact: whether you’re strong or weak doesn’t matter much in a cancer battle. The cancer will do what it’s going to do, and curling up into a little ball isn’t going to make it stop.

Courage, however, does play a role. Not so much in the facing the bad news or dealing with the endless heaps of unpleasantness that comprise a cancer battle; that’s more a question of strength and endurance. Research. Appointments. Decisions. Testing. Pain. Fear. Worry. Medical bills. The heaps are indeed endless. While it certainly does take strength to face a diagnosis, the fact of the matter is that you will hear the doctor’s words and you will see the summary on the pathology report whether you do so with eyes wide open or while sobbing uncontrollably. You will deliver the most unwelcome of news to your circle of friends and family the same way: with a quiet strength or in hysterics. The message you hear and relay — that you have cancer — is the same regardless of how strong you are. While curling up into the fetal position upon diagnosis definitely is an option, it doesn’t change the message. Perhaps it buys you some time, but the message remains the same. Living with that message and putting its effects into play takes courage.

Footloose and fever-free (mostly)

Posted: September 1, 2011 | Author: | Filed under: breast cancer, tennis | Tags: , , , , , , , | 4 Comments

As I predicted yesterday, my favorite doctor and all-around funny guy Dr S did indeed shake his head at me when I reported that I was fever-free until evening time. He shook his head, just as I expected, and said if you had a fever — even one that didn’t come until evening time — you were not fever-free. I said yeah, yeah, yeah, I’m claiming it. It counts. Even if I’m the only one who thinks so, for the record I was fever-free. So there.

He probably would have argued with me if I were still feeling like something scraped off the bottom of someone’s shoe and if the redness/soreness/streakiness/swelling hadn’t tapered off considerably. I still look like I’ve been beaten mercilessly by a very large stick after last week’s surgery, but I feel a lot better. Yesterday followed the same pattern as the day before, with me being fever-free until the end of the day. Last night the fever came on even later than the day before, and I expect this means it’s pulling off a long, protracted, and overly dramatic good-bye. That’s my official medical opinion; don’t try to talk me out of this idea or change my mind. I’m operating under the assumption that my body is working it all out, and that a slight fever at the tail-end of the day is emblematic of the trauma my body endured last week and not indicative of anything infection-related.

My visit to Dr S was quite pleasant, and as usual, we scuffled a bit over a few points. The main scuffle is an ongoing one in which the good doctor claims that before The Big Dig, i.e., my DIEP surgery for reconstruction, I did not have a waist. This has always struck me as seriously funny because one thing I’ve always had, maybe even from birth, is a waist. I was curvy before it was cool. Way before J-Lo, Beyonce, and Kim Kardashian, I had a waist and a round butt, and I’ve never had skinny legs. Not that I’m a tub-o, but I’ve always had meat on my bones and muscle. I learned long ago that certain fashion trends were not for me, and I’ve lived 42 years without ever wearing a pair of skinny jeans, quite happily I might add.

So it’s always struck me as funny that my favorite surgeon said that in the course of restructuring my body during The Big Dig that he “gave me” a waist. Of course I wasted no time in correcting him, and we’ve gone round and round about this issue ever since.

That's me in the red, w my runnin' buddy, pre-cancer

I reminded him that unlike a lot of his patients, I was pretty happy with my body before cancer invaded and necessitated surgeries that would change so many aspects of my physical self. I’ve always been physically active, and can truly say I’m one of those weirdos who likes to work out. Every time we watch the Biggest Loser, I get a little envious about the contestants being able to spend hours in the gym every day. I know, weird, huh?

As much as I enjoy working out, I love, love, love to play tennis. Back in the day, pre-cancer, my favorite day was Monday because I would have a tennis lesson, then work out, then go to a tennis drill. I’d stop for a snack in between the lesson and the gym, and change clothes then have lunch before drill, then happily collapse in a heap. Super weird, right? Some of my happiest days ever were spent at Newk’s tennis camp, where we played tennis for 16 hours over the course of a too-short weekend. If you’re a tennis player but have never heard of Newk’s, get online now and make a reservation. It will be one of the best weekends of your life.

gearing up for all day on the courts

Carianne, Rebecca, Sharon, Staci, Melanie and I played hard and had a blast. We fully embraced the camp philosophy of “Eat, sleep, and breathe tennis,” and we found it true that while at Newk’s, you have “No worries, mate!”

Kim, Staci, Sharon and I were so thrilled to meet John Newcombe himself. What a kick to be at camp with him, visit with him, and watch him in action — yes, he still plays like a pro. He’s a stand-up guy who entertained us with his tennis tales and inspired us to become “rock solid.” They say his moustache is insured for $13 million, and I believe it! My favorite thing he said about his longevity in the tennis world: “I’m basically living the same, I just curtailed the stupidity.” I’d say anyone who chooses to build a first-rate tennis academy in the Texas Hill Country has indeed curtailed the stupidity. The scenery surrounding Newk’s place is gorgeous, the pros are fun and knowledgeable, and the weekend camps are the best!

Directors Chris & Sal and the other pros earned their money the weekends we visited. We played hard, sassed them, and tried to drink them under the table. They’ve got youth on their side, though, and all-day tennis while hungover would bother me more than it would them. Team Mexico and Team Australia entertained us royally, and we will be back for another hard-core weekend soon. Planning to return to Newk’s has kept me going during this long, drawn-out, and unpleasant recovery from the dreaded disease and the even-worse infection.

That’s part of why this idea of me not having a waist has been so funny. I have indeed always had one, and to settle the issue once and for all, I went to my appointment yesterday loaded with physical evidence.

Photos. Lots of photos. 

Starting way back, you can see a waist. The photo is old and the quality isn’t great, but by golly there’s a waist. 

Then there’s the wedding dress. Again, the photo is old — coming up on 19 years — but even in all-white, the least-flattering color for full-body shots, I see a waist. I also see a very sweet look on my mama’s face, and remembering her in that sparkly pink dress brings a bittersweet smile to my face. 

This green dress was my favorite piece of my work wardrobe. I still have it, and might just try to squeeze into it for my next appointment with Dr S. Part of what I loved about it was that it wrapped around the front and buttoned at the waist. Yes, at the waist!

Like a lot of women, I found myself a bit bigger after childbirth, but looky here — I’m a mom, and I have…a waist!

My final piece of evidence was this photo of Yvonne and me at our Cooking Club Christmas party before I was diagnosed in April. Our Cooking Club goes all-out for the Christmas party, and since it’s the only time all year we invite the men, sometimes it gets pretty wild. Thankfully this photo was taken before the wild rumpus began, and again, I see…a waist!

After scrutinizing my photo evidence with his highly trained eye, Dr S had a few things to say. First, the cheerleader photo was from too far back in history. Second, that I looked very young in my wedding photo (compared to the ravaged old hag I am now, I guess), and when I told him I’ve been married 18 years he asked, “To the same person?” I know, I know, Trevor deserves a medal. Third, he said Yvonne is so pretty. On that point, the good doctor and I agree (xo, my friend!).

So the long story short, after examining my evidence, Dr S concluded that he never said I didn’t have a waist, but that he “enhanced it.” Like a lot of skirmishes, one must choose whether it’s a battle worth fighting. I unloaded my ammo in this skirmish, proved to my favorite surgeon that my waist pre-dated him, and smiled in satisfaction. I will admit that I enjoy these little scuffles with Dr S. He’s a worthy opponent in the stubbornness department, but I think he bests me in the “dogged determination to prove you’re right arena.” I’ve got him in the “who can hold a grudge longer” contest, though. We’ve gone toe-to-toe more than once, and I suspect that trend will continue.

My latest scuffle with the good doctor reminds me of my favorite quote by Kim Clijsters, one of my tennis role models. The reigning champ of the US Open and the Australian Open was the first mom to win a major title since Evonne Goolagong did it in 1980. (If you thought Evonne won a title for strangest last name in tennis, you would be wrong.)

googleimages.com

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

googleimages.com

She talks of how losing motivates her more than winning does. She seems to like the battle as much as the result, and believes that “it’s the imperfect matches that make you great.” I think so too. But that’s not my favorite quote of hers; it’s this:

“It’s nice to win 6-1, 6-0 but there’s nothing better than when it’s 5-all in the third set and nobody knows who will prevail.”

I’m trying really hard…

Posted: August 17, 2011 | Author: | Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: , , , , | 20 Comments

I’m trying really hard not to be discouraged by the latest bevy of bad news. Picture me squeezing my eyes shut as tight as they will go, turning a bit red in the face, and willing it to happen. Don’t. Get. Discouraged. Having my surgery postponed and being smacked in the face with the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually begun counting the days until saying adios to the port. It’s served me well, but I’m so so so ready for it to be gone. I could almost imagine sleeping comfortably on my left side again, with no kink in the line that’s sewn into my jugular vein. I could picture myself in a sundress, sans the alien-looking bump with prongs under my skin. But alas, it’s not to be. Once again, the hits keep coming, and I have to suck it up and deal.

I’m trying really hard. So hard that I just wrote a beautiful post, if I do say so myself, about the effort. The words were flowing and I was thinking, “This is going to be good.” Then promptly lost it. All of it. Instead of “save” I hit “cancel.” And with one keystroke, it’s gone. I will attempt to recreate, but already know it won’t be as good.

I’m trying really hard to remember that while yes, being diagnosed with cancer–at a young-ish age no less–is bad, plenty of women have it worse than me. There are lots of rarer, more-aggressive forms of breast cancer than mine, and the battles are many. While my recurrence odds are low, the mere fact that I have odds reminds me in a terrifyingly real way that there’s always a chance that it will come back. As another fellow cancer chick so eloquently put it: “It’s losing your innocence all at once, rather than in bits and pieces over a lifetime.” Being diagnosed with cancer at a young-ish age is bad enough; fearing recurrence is even worse. Then you factor in all the other junk that comes with it, and before long it’s like inviting one person to a party and having them bring a village of savages with them. They drink all the good booze, hork down the delicate hors d’oeuvres, manipulate the conversation, interrupt with Buddy-the-Elf-esque burps, wipe their dirty mitts on the pretty towels in the guest bathroom, spill red wine on the beige carpet, and change the tinkling background music to heavy-metal hair bands. The cancer crew is most unwelcome. And yet they overstay their welcome in myriad ways.

I’m trying really hard to not freak out as the possibility of infection scares the tar out of me. There’s a kindly gatekeeper in my brain that shields me from the harsh memories of the battle royale that occurred last summer between my war-torn, ravaged body and mycobaterium fortuitum. While of course I remember being there and going through that, it’s as if I’m watching a movie of myself enduring that hell. It’s a gauzy, soft light, much like the lens filmmakers use to shoot a scene with an aging star. The gatekeeper that usually protects me from windexing the lens to see it unfold clearly, in all its replayed gore, is off duty. What I want to do it pack up all those horrible memories of the events last summer and put them in a box and leave them on the side of a deserted highway. Then I want to put the pedal to the metal, burn rubber, and beat feet away from them, without even once glancing in the rearview mirror. I want to find myself on a pastoral country road, with tall, leafy trees and big puffy clouds–somewhere far, far away from any hint of cancer or infection.

I’m trying really hard to be calm and not freak out about the possibility of infection. Of course I know that anytime one goes under the knife, the chance of infection is there. But rather than a distant “maybe,” infection is a real thing for me, and I have a visceral reaction to the idea of going through that again. And while the preventative antibiotics are just that — preventative — I find myself with real fear instead of comfort. The prophylactic effect should make me feel better, but instead I feel worse. There is a very fragile peace that was brokered between my body and the bacterium, and peace without the threat of war is meaningless.

I’m trying really hard to not gag on the antibiotics.  I dutifully swallow the two pills that are my front-line defense against the wily bacterium that may want to  set up shop again. Those bacterium were evicted after their long, comfy stay in my concave chest wall, and they may well want to reestablish their presence. So I swallow the pills, knowing full well that soon, very soon, I will feel like utter hell. The all-day nausea, the roiling queasiness, the lost tastebuds, and the sore throat that were my constant companions for 267 days are making a return visit. Back by not-at-all-popular demand is the diligence required in spacing the drugs 12 hours apart, and the taking them on a stomach empty enough to allow them to do their thing but not so empty as to make me puke. Instead of feeling comforted by the preventative drugs, I’m scared.

I’m trying really hard to think happy thoughts. Right now I’m remembering a highlight of our recent vacation, in which we were all in the ocean battling giant waves as the tide turned. These were seriously bitchin’ waves, a good 8-feet tall, and we were in the thick of them. I was ecstatic that the water was warm enough for me, a Gulf Coast chicken; that the waves were so accommodating for body surfing and frolicking; and most importantly that I was there to experience it. As I came up from being tumbled ass-over-tea-kettle by a giant wave, Macy overheard me say that that wave just bitch-slapped me. She misheard me, though, and thought I said that the wave had “fish-slapped” me, and she wanted to know if it was a flounder, because they tend to be especially evil. I’m gonna smile at the idea of being fish-slapped, even though I feel like crying instead.

I’m trying really hard to focus on how far I’ve come instead of how many setbacks I’ve had. The race is long, yet I’ve continued to put one foot in front of the other. Keep on keepin’ on. Several people have tried to help along the way by telling me that God only gives us what we can handle, and that he must think I can handle a lot. Thanks, but zip it. I don’t believe it, and I’m not comforted by that. While there are a host of helpers along the way, there’s only one person involved in this battle, and that’s me. No one is doling out the hard knocks in an insane game of “let’s see if this will make her crack.” It’s random, it’s uncontrollable, and it’s life. It’s life, and my job is to keep on truckin.

I’m trying hard to remember that this is temporary. As my wise survivor sister Jenny reminded me countless times during diagnosis, surgery, and treatment, this is temporary. This mess won’t be at the center of my life forever, as difficult as that is to imagine now. The ennui I feel today won’t always prevail. It’s easy to get caught up in the quagmire of unpleasant things that have come my way. I can see just how easy it would be to slip into the loving arms of pills, booze, rage, and self-pity. Name a vice, any vice; I’ll take it. It would be so, so easy to say I’m done, I’m out. Let the vultures pick my carcass clean because I give up.

I’m trying hard to walk on the sunny side of the street, as my sweet mama always advised. There are some dark and ominous alleyways around me, but I will seek out the sun and pound the pavement until all this madness is over. Those who have been on this “journey” before me assure me that one day it will all be a distant memory. I know this is true, yet it seems impossibly far away today. One day I will look back at all this and think, “Man, what a shit-storm that was.”

All hail the Raiders!

Posted: July 18, 2011 | Author: | Filed under: baseball | Tags: , , , , , , , | 6 Comments

They did it!

The mighty Red Raiders beat the Pearland All Stars 15-6 last night to clinch the Sectional title. Cue the music.

You know what this means, right? We’re going to Tyler.

Payton upheld all of his superstitions for this series: wearing the same pants for each game since the last win, no matter how filthy with infield dirt and grass stains; eating the same meal after each game won; following the same schedule during the day on game days. Macy and I joined in the festivities and put red streaks in our hair for the do-or-die game last night. 

Our mojo definitely worked.

Here’s the local story about last night’s glorious game. Hope you’re smiling as widely as I am after you read it.

What a sweet, sweet victory. Readers of this blog may have heard about the utterly crummy season this girl had last year, and how yours truly missed every bit of the Raiders’ victories and trip to the State Championship.

What a drag. Words fail me as I try to express just how crappy it was to miss all this last summer. I’m not sure if it’s even possible. I have tried, but I know I’ve come up short.

All throughout the All Stars series so far, part of me kept thinking, “wouldn’t it be nice if the boys won District and Sectional, and got to Tyler, again, so that I could see it this time?” But another part reminded that part that it’s not about me. It’s about the 11 boys on this team.

Lucky for me, those 11 boys came through and I WILL get to see it this time. I am one happy baseball mama.

I woke up the night before last, after our team beat the Pearland team to stay alive, thinking about the next game. All day yesterday, the day of the winner-take-all-loser-goes-home game, my thoughts kept turning to baseball. Payton was uncharacteristically nervous yesterday, and had a hard time eating his pre-game meal. Walking up to the fields yesterday, we had to pass the Pearland fans in their bleachers to get to our bleachers. There were a lot of them, and they were fired up. But when we got to our bleachers, we saw a sea of red. Folks turned out in droves to support the Raiders. Members of the 12-year-old All Star team lined the outfield fence and had 3 big flags, each with a different letter: F, C, and A for “First Colony American.” Those flags were flying even before our boys stepped onto the field.

The Raiders looked a tad bit shaky as the Pearland team came up to bat. It was 3-0 them to start, but the boys in red looked strong and confident. I knew they were going to come through, and by the 3rd inning it was 9-4 us. While anything can happen in baseball, I began to really and truly realize that we were close to clinching the coveted trip to Tyler, and that I was going to be there for it.

I’ve said it before, but it bears repeating: watching my kid on the field is one of life’s greatest joys for me. He’s in his element, doing what he loves most in the entire world. He’s energized and engaged, he’s a gamer. Baseball is his life, and he makes the most of it. Every single game. Seeing #11 come up to bat thrills me; watching his discipline at the plate, appreciating the mechanics of his swing, and hearing him make contact with the ball all work together to fill me with happiness. Knowing that he’s experiencing success in his most beloved endeavor is parental bliss.

The game was fantastic, and last night’s victory is so, so sweet. I’m still savoring it today, exhausted though I may be from the late-night celebration. Seeing Payton on the field with his team after the game, awaiting their Sectional banner and pins from the District Commissioner was pretty great. 

Seeing the boys come together and play like champions was redemption for a crappy summer last year. That summer will go down in history as the worst one ever. This one will be remembered as the best.

 

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