Does It Ever End?

Posted: December 5, 2016 | Author: | Filed under: breast cancer, cancer fatigue, kids | Tags: , , , , , , , , , , , , , , | 7 Comments

Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. mandjeffreyThis is my favorite girl today. fullsizerender

I know, right??? How does that happen???

Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.

She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.

Feelings. The dreaded feels.

I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)

Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.

When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.

That will happen, right?

Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.

I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.

I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:

Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.

I should know damn good and well that there is no end. So why do I keep looking for it?

 

Cupcakes

Posted: January 23, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 15 Comments

No, this post isn’t really about cupcakes. Sorry. It’s about a funny shirt and stupid people.

I wore this shirt to the gym on Friday and then to run errands afterward. I meant to write about it then but was busy being the hostess with the mostess and am just now getting to it. Anyhoo, the shirt:

My friend Jodie sent it to me in the midst of my cancer “journey” and I howled with laughter. I wore it proudly after my mastectomy and before reconstruction, when my chest was flat as a board and very conducive to easy reading. I wear it proudly now after reconstruction, and will continue washing it on delicate and hanging it to dry in hopes of prolonging its life.

I usually get a comment or a sly smile from my fellow gym rats when I wear this shirt, but Friday I encountered two older ladies who didn’t appreciate the humor. The first one looked at me and tsk-tsked then told her friend how inappropriate she thought it was to make light of such a serious situation. She wondered aloud why our club doesn’t have a strict dress code.

Really??

You know me, I couldn’t let it go. Just couldn’t turn the other cheek and walk away.

I said excuse me, I couldn’t help but overhear (not that she was trying to be discreet in her criticisms) what you said about my shirt. I’m curious what exactly about it bugs you? She replied that she thinks it’s disrespectful for people to be flippant when they know nothing of the disease.

Oh boy.

I pointed out as nicely as I could (which probably wasn’t really all that nice) that I do indeed know something of “the disease.” She looked a bit surprised when I told her that I myself had breast cancer and am proud to be a survivor. I like the fact that people in the gym who don’t know me see my shirt and realize that cancer survivors can get on with life. I’ve had several people tell me that seeing me at the gym is inspiring to them, and on days when they’re struggling through their workout, they see me hitting it hard and decide to step it up a bit. After all, if the girl who had cancer can do it, they can, too.

But Judgemental Lady didn’t see it that way, apparently. See, she thought there’s no way I could be a cancer survivor because I’m too young. Women my age don’t get breast cancer, she says.

Let’s just say that she got a bit more education on that topic than she might have wanted.

I informed her and her friend that according to the American Cancer Society, nearly 20,000 breast cancer diagnoses a year are delivered to women younger than 45. That my breast surgeon has performed bilateral mastectomies on women younger than me. That my OB-GYN — who diagnosed me — recently diagnosed a women who is 27 years old. That young women with breast cancer fight a different battle than their older counterparts, for many reasons: facing more aggressive cancers and lower survival rates, (hopefully) battling the beast for more years than we’ve been alive, a lack of effective screening for women under 40, being underrepresented in research, having young kids at home, dealing with fertility issues, enduring early menopause, and struggling with serious body-image issues being among the more egregious.

No charge for the lesson, lady.

I set her straight and went on about my business. While waiting in line to return a coat that was too small for Piper (yes, little piggies do need a coat, even in Houston), a lady told me she liked my shirt.

Oh, really? How refreshing.

She went on to ask if it was a fundraiser for cancer. I had to think about that for a minute, and while I was trying to figure out what in the sam hell she meant, she started blabbing about a bake sale her kid’s school did for cancer. She thought my shirt referred to a bake sale! Now that’s a new one.

I explained that no, it’s not a fundraiser and it’s not a bake sale, that I myself had breast cancer. She still looked puzzled, so I spelled it out for her: “cupcakes” is a euphemism for breasts, and mine “licked cancer” by defeating the wily beast that was laying siege to my body. I guess technically my cupcakes didn’t lick cancer, but my surgeons did by amputating said cupcakes, but that seemed like more detail than the conversation warranted. She smiled at me in the manner one would smile at a deranged lunatic on the loose and scooched her shopping cart back a little bit.

I don’t care what the general public thinks; I love my shirt and will continue to wear it proudly. Judgemental old ladies and bake-sale zealots be damned.

 

A sliding scale

Posted: November 28, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 6 Comments

Words and images of battle are often ascribed to cancer.  Some cancerchicks take issue with that but I’m not one of them. Having written this blog — mostly about cancer — for the last year, I’ve come to realize that it’s hard to talk about a cancer battle without well, calling it a battle. I’m not even sure what else one would call it. “While undergoing treatment for breast cancer” seems rather cumbersome; “While undergoing treatment for breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” doesn’t quite work, but “While battling breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” is a bit more succinct. “During the time in which I was ridding my body of cancer” is pretty clumsy, but “During my fight against cancer” works quite well. I like efficiency, so the battle metaphor works for me.

One thing I don’t like about it, though, is the idea that those who “lost the battle” with cancer didn’t fight hard enough or were somehow at fault. Cancer is totally random, people. It strikes those who take excellent care of themselves as often as it strikes those who are not so careful with their health.  Survival depends on a lot of things, and sadly, sheer force of will is pretty low on the list. If survival were tied to will, my sweet mama would be alive and probably ringing me up on the phone right now to ask me if I’ve mastered the art of pie crust yet and to suggest that I let her little darlins, aka my children, have enormous ice cream sundaes for breakfast. She fought like hell and did every single thing her team of doctors at MD Anderson told her to do, no matter how tired she was or how crappy she felt. She endured more awful stuff than I like to remember. She wanted to live to see her little darlins grow up (and to hassle me about not giving them enough treats/presents/leeway/benefit of the doubt). She fought like hell, and waged a mighty battle, and was a tireless, non-complaining warrior. And yet, she still “lost.”

Cancer, and the battle one’s life becomes when diagnosed, is on my mind today, as it often is, but today even more so than usual. Another friend has been diagnosed, and my heart is so heavy. My thoughts return to her often, and I’ve felt just plain sick ever since I heard the terrible news. Cancer comes after people indiscriminately, and it seems to me it gets the good ones just as often as the mean ones. My newly diagnosed friend is most definitely one of the good ones. She deserves so much better than pancreatic cancer. How someone with such a sweet and gentle nature and such a giving heart can fall victim to such a merciless fate is beyond me. And yet, she begins her epic battle today.

I’m not naive enough to wish for a world free of cancer. But I do wish there was a sliding scale. If you’re going to get it, in all its ominous forms, why can’t the scope of the disease be equal to how nice a person you are? Why is it that “only the good die young,” as Billy Joel sagely points out? It’s just not fair for cancer to wage war on someone who is patient and kind when someone who’s vain and shallow gets a free pass. Or for cancer to creep up on someone who’s worked all his life and is ready to finally enjoy retirement, while someone who’s dishonest and rude escapes unscathed. I just hate that cancer pounds on the door of someone who’s trying to do all the right things, yet skips completely the person whose main concern is keeping up with and besting her neighbors. Where’s the sense in cancer claiming a delightful human being who would give you the shirt off her back, yet ignoring the not-so-delightful human being who is petty and small?

I’d like this system a lot better if there were a sliding scale.

Square one

Posted: November 17, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 7 Comments

“Your present circumstances don’t determine where you can go, they merely determine where you start.”

Thank you, Dr Nido Quebein, for telling me that. After the rough start I had last week, I was disheartened at the idea of starting over — from Square One — in finding a surgeon to do my oophorectomy. I needed a little attitude adjustment and Dr Q’s lovely quote provided just that.

Here’s the thing: my cancer “journey” has been long, complicated, circuitous, and seemingly endless. What is essentially a rather simple cancer that should have been easy to eliminate turned into a wild game of “how much can you take?” Just as I thought I was nearing the end of my “journey,” with what could be my last revision to reconstruction, the game became more intense and complicated  and pretty  much blew up in my face.

The next step of my “journey” should have been quite simple — have a routine procedure to remove my ovaries and eliminate the hormone production that fed my cancer. It’s outpatient surgery and rather easy compared to what I’ve endured thus far. But rather than being simple and working according to plan, it got hairy and I got overwhelmed. The idea of yet another doctor becoming involved filled me with dread, and it was like I was back at the beginning of this “journey,” newly diagnosed and jumping through hoops, frantically doing what’s needed to get to the next step.

Here’s where we are now: after standing on my head and reciting the alphabet backwards while juggling flaming batons, I was granted an audience with the lovely lady who schedules appointments for the next doctor in my ever-expanding roster. Oh happy day, after trying for 4 days to get through to this lovely lady, success was mine! I learned that this doctor only has office hours on Tuesdays and Thursdays because she’s in surgery every other day. Makes perfect sense, as she is a GYN oncology surgeon at the world’s #1 cancer hospital. What doesn’t make sense is why her staff doesn’t seem to be around on those other days. But apparently that’s not my concern and as long as I jump through the right hoops, maintain my headstand and keep those flaming batons twirling, I will eventually get what I need.

Hahahahahahahahaha.

Silly, silly girl.

You’d think I would have learned at some point on this wretched “journey” that even when one does all the right things, and completes all the required steps, one still does not get what one needs.

When a human voice finally appears on the other end of the line, I think I’m going to actually schedule an appointment. I’ve cleared my schedule to accommodate hers. I am ready and willing to appear in her office at MD Anderson whenever she can see me. It’s the absolute last thing I want to do, mind you — see another doctor about another surgery. To add insult to injury, factor in the psychological warfare involved in knowing that this next doc works in the same facility–and in the same department–where my mom sought treatment for her cancer, and  her “journey” didn’t exactly have a happy ending. Not even close.

Nope, scheduling an appointment isn’t that easy. First, there’s the prerequisite litany of questions: name, address, phone numbers, email address, birthdate, insurance carrier, group number, ID number, policy holder’s DOB and SSN. Then comes the question of what’s your diagnosis? When I replied, breast cancer, the lovely lady not so lovingly informed me that this office doesn’t deal with breasts. Duh. I patiently replied that I understand that and know that this office deals with the more southern ladyparts, but because of my breast cancer, I need to consult with this doc on an oophorectomy. Seems clear, right? Then the lovely lady wants to know why I want to have my ovaries removed.

Why, indeed?

Because I’m bored. Because it’s been too long between surgeries for me. Because I miss the prick of the IV desperately searching for a vein in my tapped-out venous system. Because I’m lonely for the company of people in scrubs & white coats. Because I’m hankering for the smell of Betadine and the commotion of the OR. Because I long for the feel of the plastic mask on my face as I lie completely naked under a bright light in a room full of strangers. Because I’m hoping to lose a few lbs before the holiday glut and think the all-day vomiting that inevitably comes to me after anesthesia is a good diet plan. Because I haven’t spent enough time recuperating from surgery while the world around me marches ever onward.

If there’s a contest for most horribly worded question, this lovely lady would win it, hands down.

Once again, I’m called upon to gather my composure and marshal my manners to answer. I resisted the mighty temptation to give her a smart-ass answer and calmly replied, because my oncologist recommends eliminating the source of the cancer-causing hormones. I wonder if the lovely lady could tell I was answering her through tightly-gritted teeth and with fists clenched as I battled the urge to make her ears bleed from a long, colorful line of cuss words. I wonder if I should have told her that when you’re diagnosed with cancer at age 40, with elementary-school-aged kids at home, and when your own sweet mama died an anything-but-peaceful death from cancer at the still-young age of 67, you’ll take whatever steps are necessary to increase your odds against this savage killer.

Lovely lady went on to inform me that I would need to provide documentation of my breast cancer being ER+ and PR+ (estrogen and progesterone positive), along with a host of other documentation. I would need to provide pathology reports from my breast biopsy in April of last year, when the idea of becoming a cancer patient was the last thing on my mind. And go ahead and throw in the pathology reports from my bilateral mastectomy and the paperwork on my last Pap smear, too. Wait–don’t forget to have Dr P, the OB-GYN who referred me to the GYN oncology surgeon, send his notes as well. After that, and after verifying my insurance, the GYN oncology surgeon will review my case and see if there is sufficient evidence to proceed. Lovely lady promised to call me back and let me know where I stand.

For realz.

Ok, so more hoops to jump through, more due diligence on my part. Luckily I’m a rather fastidious cancer girl, and I have a very thick pink binder containing copies of everything the lovely lady requested except the Pap report and Dr P’s notes. Two phone calls and one online consent form later, that information is en route to LL.

Hurry up and wait.

After making the phone calls and gathering my records, I faxed 24 pages of the juiciest details of my breast cancer. All the nitty-gritty deets about tumor markers, mitotic index, prognostic markers, lymphovascular invasion scenario, anatomic pathology diagnosis, sentinel lymph node results, tumor size, and Elston-Ellis modified scores. It’s a fascinating read. And a wonderful trip down memory lane, just as I think I’m putting a little distance between myself and the cancer show.

I’ve done my part, now I wait.

Back to Square One.

 


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. 

6 years later…

Posted: October 13, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , , , , | 14 Comments

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.

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)

I’m expecting a big fat “rejected!” notice

Posted: September 21, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , | 9 Comments

Trevor is trying to get life insurance on me. I’m sure that should make me nervous on some level; however, I think he knows that even on my worst day, his life is a bit easier with me in it. Right?? Right??

Here’s what’s funny: I had to fill out a bunch of online forms, knowing I don’t have a snowball’s chance in hell of being accepted. It’s ok, I have really thick skin. I don’t worry too much about rejection.

The online application has a big section on heath issues, conveniently divided up into categories: physical exam; common conditions; skin, hair & nails; musculoskeletal; women’s health; and “other.”

I’m sure I would pass the physical exam, as long as they give partial credit for having partially finalized body parts. The common conditions section included questions on whether one has had problems with things like colds, flu, allergies, as well as kidney stones and appendicitis. Since when did the latter two become common? I hope I never have either.

The skin, hair & nails section sadly had nothing to do with how fastidiously or fashionably maintained one is. I would pass with flying colors on exfoliated, moisturized, and sunblocked skin, as well as highlighted hair and a nice mani-pedi. But no, they want to know about boring stuff like shingles and psoriasis.

Musculoskeltal was a little more interesting with queries about back pain, bone spurs, fractures, and plantar fasciitis. No, yes, yes, and yes. That was easy.

Women’s health dealt with exactly what I’d expect: birth control, menopause, hormone replacement therapy. In other words, some of the most depressing topics on the website. No need for birth control when you’ve been thrown into early menopause. The baby-making department has not only been downsized but is out of business and closed for good. Menopause? Yep, in spades. Every symptom under the ‘pause banner got a big, thick checkmark from me. Hormone replacement therapy? No chance. The damn hormones fed my cancer machine, so there’s no way I’m going to replace them. Not even if they begged me to come back. 

The “other” section inquired about a smorgasboard of topics: concussions, cycts, hernias, and plastic surgery. Hmmm, seems strange to throw the plastic surgery one in there. I can’t wait to tell Dr S that his exalted specialty is lumped in with such ordinary things. 

After checking the boxes and reading the laundry list of symptoms and conditions, I had to give specific detail about any “health concerns.” This is where I’m expecting the giant red “rejection” stamp to hit. The questions:

“#1. During the past three years, have you for any reason consulted a physician(s) or other health care provider(s), or been hospitalized? #2. Have you ever had, or been treated for, any of the following: heart, lung, kidney, liver, nervous system, or mental disorder; high blood pressure; stroke; diabetes; cancer or tumor; drug or alcohol abuse including addiction?”

No amount of creative writing or playing fast & loose with the facts is going to help me here.  During the past three years, I have indeed consulted a physician(s) or other health care provider(s) and been hospitalized. Further, I have indeed been treated for cancer or tumor; the jury is still out on the mental disorder and the drug/alcohol abuse issues. I’m thinking those could go either way. 

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.

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.”

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