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. This is my favorite girl today.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
Thank you, google images.
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)