I have a new Tamoxifen side-effect to add to my long list: T-rage.
T-rage joins an unpleasant cast of characters that feature starring roles in my daily existence. These characters take turns on center stage and compete for screen time. They jostle and nudge each other in their attempts to take over for real.
Who are these characters? The cast list is long, so bear with me. I’ll save the newest, T-rage, for last. These characters are all sponsored by my frenemy Tamoxifen. It’s my frenemy because it’s alternatively saves my life while also making me miserable. That life it is busy saving is increasingly becoming one not worth living.
Anxiety: because once you’ve faced down cancer, you need heightened worry and fretting, right?
Bone pain: an ache so constant it only changes with the inexplicable flares that come along. Pain so acute I swear I can see my bones under my skin, because the pain illuminates them. I’d say I’m like a skeleton, except I’m not because of the extra weight that literally weighs me down, thanks to my frenemy Tamoxifen. If only I were a joyful, dancing skeleton.
Joint pain: while I don’t envision the joints beneath my skin the way I do my bones, they hurt. A lot. Most of the time. And I don’t even want to think about Tamoxifen’s contribution to my bad knee.
Hot flashes: because living in Houston–land of eternal summer and omnipresent humidity–isn’t enough to keep one drenched in sweat.
Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
Dry skin: Why can’t all that sweat moisturize?
Brown spots on my face: I’m aging at a quick clip. Not pretty on a banana, not pretty on me.
Thinning hair: To go along with the dry skin and brown spots. Pretty. Real pretty.
Peach fuzz: there’s hair where I don’t want it while that on my head is withering. By then end of my proposed 10-year course of this damn drug, I’ll have a full beard and a bald head.
Mental fogginess: huh? What was I going to say?
Sleeplessness: because the previous characters don’t wreak enough havoc, now there’s no escaping them.
Fatigue. Crushing fatigue. As in, each of my limbs feels as if it weighs 50 pounds. As in, it’s a Herculean effort to get off the couch. As in, I’m not rested after a full night’s sleep. As in, this bites.
Irritability. Major irritability. Sometimes I can barely stand myself. It is ugly.
And, introducing irritability’s next-of-kin: T-rage.
You’re heard of ‘roid rage and road rage, and now T-rage. It’s similar to the other rages, in which something — in this case, Tamoxifen — causes a major-league reaction to a minor provocation. The sight of a Toyota Camry ahead of me in traffic (I hate Camrys). The guy conducting a shouting match on his cell phone in the middle of the grocery store (does anyone want to hear him squabbling with the unfortunate soul on the other end of that conversation?). The lady in the grocery store who leaves her cart in the middle of the aisle then gives me a go-to-hell look when I say “excuse me.” The asshat in the middle of the parking lot waiting for the person loading their groceries to pull out rather than picking another space. There are a hundred parking spots, but he’s gotta have that one. It’s a wonder I got out of the store without someone filing assault charges.
The T-rage sends me into certifiable-crazy mode in an instant. It’s not enough to just get around the Camry in traffic; I want to ram it. I’m not satisfied with shooting the cell-phone combatant a dirty look; I want to yank the phone out of his hand and shove it so far up an orifice he’d need it surgically removed. I’m not at all content to say “excuse me” to the inconsiderate grocery shopper in a shitty tone; I want to push her down and run over her repeatedly with her ill-placed cart. I don’t want to just shake my head at the fool holding up traffic in the parking lot while he waits for that close spot; I want to hurl my gallon of organic milk through his windshield.
Don’t even get me started on the moron in the mini van at middle-school pick-up yesterday who thinks the “No parking” sign doesn’t apply to her. No longer content to roll down my window and politely (or rudely) ask her not to park there, with T-rage, I want to do mean and horrible things to her.
I’ve got the T-rage. Real bad.
This. Is. Not. Good.
I know full good and well that I would not do well in prison. I’m much too fond of my own personal space, unlimited moisturizer, and fresh produce. Oh, and alcohol. Some inmates want a cake with a file or a shiv baked inside; I’d need my visitors to smuggle in booze.
Since prison is not a viable option, I need to get a grip on this T-rage. I need to figure out how to get through my day without murderous thoughts about the neighbors who can’t be bothered to pick up the crap-tastic freebie newspapers littering their driveways. The sight of so many neglected second-rate publications should not incite such violence. And yet, it does.
There are tips for dealing with road rage, and I’d suggest the best way to avoid ‘roid rage is to simply not take steroids. But I’ve not found any helpful tips on avoiding the T-rage. I’m gonna have to look for a 12-step program. Right after I punch someone.
It’s been way, way too long since I’ve spent any time on this little blog. It’s been a rather busy time around here, with the start of school. Two new schools and a long drive to and fro (the schools to which my kids are zoned correspond with our new house’s location and not the location of the temporary house we’re crashed in while the building proceeds at a snail’s pace) makes for a rather truncated day. Couple that with the fact that high school and middle school start and end on rather opposite schedules (he starts early, she starts late), and I’m in the car a lot. A whole lot.
To those sweet souls who have inquired about whether I’m done blogging, here’s the answer. I’d speculate that I’ll be done blogging as soon as I’m “done” with cancer. Which will be never.
While it’s true I don’t have the “everyday” cancer to deal with anymore, it’s still around. Always around. I’ve moved past the “everyday” cancer — surgery, recovery, wound care, infection fallout, constant doctors’ appointments, sorting through mountains of medical bills, battling insurance, researching treatment pros & cons, yadda yadda — but it’s still around.
Case in point: minding my own business at a red light yesterday making yet another run to or from one of my kids’ schools and I glanced at the car next to me. On the back windshield is a HUGE pink ribbon sticker. I mean HUGE. It took up enough space to make me wonder how the driver sees out that window. And bam! cancer is in my face. I wasn’t thinking about anything cancer-related, yet there it is, always ready to insert itself into daily life. While I recognize the intent behind those who put pink ribbon stickers and magnetic decals on their cars, I don’t know that I will ever get used to the insidious power the dreaded disease has to permeate every aspect of life, even years down the road.
Another example: I overheard a conversation between two ladies at the gym about a mutual friend of theirs undergoing her third lumpectomy. Third. On the same breast. Again, I was minding my own business, sweating like a pro wrestler and sucking wind while I finished up my cardio. As I plucked my earbuds out of my ears, what do I hear over the sound of my own heavy breathing as my heart is pumping and my lungs are expanding and my muscles are burning and my brow is dripping? Cancer. More cancer.
I resisted the urge to insert myself into the conversation and tell those ladies to advise their friend to skip that THIRD lumpectomy on the SAME BREAST and instead strap on her battle gear because this beast is determined to take up residence in her. Cancer is very rude that way. Uninvited, unwanted. Always around.
I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?
M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.
Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.
The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.
It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”
Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.
M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”
Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.
Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”
Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.
Have you ever cried so much that your eyes seemed like they would fall right out of their sockets? Have you ever wept so much that every inhalation felt like you were sniffing ground-up glass? Have you ever bawled long enough that your eyes were tiny yet swollen slits and your lungs hurt every time air entered or exited them? Have you ever hurt so deeply and so completely that you seriously thought you’ll never recover? Have you ever wanted crawl into your bed right now, in the midst of this swirling inferno of misery, and never, ever get up?
Don’t call or text or ring the doorbell because there will be no answer. None.
At some point in this future I may find the strength to plaster on an insincere smile and reply “Fine” when asked the inevitable “How was your Mother’s Day?” But I won’t mean it. I won’t feel it.
I just won’t.
Don’t bother telling me I have so much to be grateful for. Don’t insult me by telling me to look on the bright side. Don’t waste my time pointing out all the good in my life.
I can endure the long-distance slog that is facing a cancer diagnosis. I’ve never been one to deceive myself when reality stared me in the face.
I can handle hearing the worst possible news and do it with an inquisitive look on my face.
I can hear the worst-possible news with dignity and without falling apart (at least not in public).
I can face everyone’s worst nightmare without ever once whimpering, crying, or losing it.
I can digest the worst-case scenario with a straight back and a strong will.
I can formulate a Plan-B after Plan-A dissolves like the pages in a generations-old photo album, then start working on Plan C as soon as it becomes apparent that Plan B is hopeless, too.
I can dot every “i” and cross every “t” and still be shocked when there’s no pay-off for playing by the rules.
I can handle more stress than I ever before imagined, and I can get through more harrowing ordeals than I ever would have expected.
I can endure worse pain than that required to bring a new life into the world.
I can take it when I’m told again & again that no one anticipated the scenario that has become my reality.
I can suck it up and grit my teeth through repeated instances of “no one saw this coming.”
I can make it thorough the extreme mental challenges that follow a worst-case-scenario physical test.
I can serve as the poster child for “who in the hell has that kind of terrible bad luck?”
I can thrive amidst the “everything that could go wrong did go wrong” scene.
I can be the one that even the oddsmaker wouldn’t have predicted–and not in a big-winner way.
But pit me barefoot against a goat-head thorn and I may just crumble. Ask me to endure that sharp stick of brittle thorn into the tender flesh between my toes, and I may not make it.
That thorn may just do me in.
Day 6 of the WEGO Health Activist Writer’s Month Challenge nearly made me give up on the daily task of blogging about my “condition.” I don’t like my “condition” and I don’t like the touchy-feely side of dealing with that “condition.” I like to keep my word, though, and I said I would take on this challenge, so here goes.
Today’s prompt: Write a letter to an older you. What lesson do you want to make sure you remember?
Well, with my dilapidated body, blown-out knee, and menopause-induced lunacy, the older version of me scares the hell out of the current version of me, so I’m going to write a letter to the younger version of me.
Dear Younger Me,
Listen up, missy: that college dream of yours to light Madison Avenue on fire with clever advertising campaigns isn’t gonna happen. You don’t like the Big City — too many people and way too many germs. That other dream of writing children’s books isn’t going to happen, either. You do end up reading a whole lot of good ones, though, to a couple of precious kids who look so much like your baby pictures it’s scary.
Your smart mouth will get you into a fair amount of trouble. I’d tell you to be careful, go easy, and use restraint, but we both know you’d flip me the bird and keep right on sassing. I can tell you that eventually you do learn the fine art of holding your tongue, but it will never come easy.
That sweet, loyal, smart, cunning and unmatched yellow dog who grips your college-aged heart will never let go. She will protect you, and then your children, for nearly 15 years. She will guard the entrance to the nursery and sleep under the crib. She will show you her back when you get out your suitcase, because she knows you’re leaving, if only for a few days. Her time on this Earth will grow short but she will stick it out longer than anyone expects because she will insist on seeing you through an even rougher patch: the death of your sweet mama.
Guess what, girlie? Your sweet mama keeps a tight grip on your heart, too. Not a day passes without you feeling the loss, in big ways and small ways. (Note to self: don’t give up on trying to make her pie crust. It won’t ever be like hers, but keep trying.)
Just about the time cancer steals your beloved mama, you’ll start getting an annual mammogram. You’re ahead of the schedule thanks to that mama-stealing cancer, and every year the mammogram will come back funky. Don’t settle for the “dense tissue” rationale. There’s a tumor growing, and it ends up taking up a lot of space, both in your body and in your life.
Look, I know you’re going to be busy living your life and raising those two little kids when the diagnosis comes, but please, brace yourself, because it’s going to get ugly fast. And say a little prayer to the environmental-services gods who control your operating room on the day of your mastectomy; maybe we can avoid that post-mastectomy infection that will reorder your life. And BTW, the bilateral mastectomy was totally the right choice. Good girl for following your gut. There will be no hint, not a single whiff, of cancer in your left breast, but it’s there.
Give up right now on thinking your cancer “journey” will be “one and done.” It will be more circuitous than you can ever imagine, and it will change you in ways you won’t discover until years later. Oh, and before you even begin that circuitous journey, you’re going to have to deal with melanoma on your right foot. I know, who puts sunscreen on their feet, right? Hate to tell ya, that even though you catch it early, the surgery to remove the melanoma will be the most painful thing you will experience. Yes, it’s worse than childbirth and a bilateral mastectomy. Oh yeah, about childbirth–when your water breaks, the baby is coming. Yes, he’s early. No, you haven’t finished the birthing class or packed your bag, but it doesn’t matter. And you’re going to get teased for decades for reading ahead in that “What to Expect” book on the toilet in the middle of the night when your water has broken and your much-better-prepared spouse sleeps peacefully, unaware of your foolishness.
It turns out fine, the baby is healthy (but hard-headed). Even the cancer thing is manageable. Not easy, but manageable. I think we both know you can handle it. You’re going to learn a lot, whether you want to or not. Your limits will be tested. You’re going to make some true and life-long friends along the way. You’re going to unload friends, too, in one of many hard-learned lessons. You see, there are people who are willing to give what they want to give, not what you need. This is a very important distinction. Trust me, you’re much happier without ’em. A couple more pieces of advice: first, don’t ignore that knee pain while you’re running. Stretch before and after you pound the pavement. Listen to your body. Pain is its way of saying something is wrong. Ice your knee after each run. I know it’s a hassle, but so is living with constant pain. Years down the road, you’re going to be embarrassed by how you hobble down the stairs like a woman twice your age. You’re going to be frustrated by the ways in which your body fails you. I don’t have an answer for how to deal with that, because I haven’t figured out how to deal with that. I do recommend drinking champagne as often as you can. I don’t have to tell you to never, ever pass up an opportunity to drink some bubbly. The lesson I want you to remember is that the sound of that popping cork will soothe your soul, every time.
Day 5 of the WEGO Health Activists Writer’s Month Challenge: “If I could do anything as a Health Activist…”
Since it’s my dream, I’m claiming two superpowers. In addition to kicking cancer’s ass, I would eliminate all the stupid/inane/insensitive/uncaring/clumsy/offensive things people say to those of us in cancerland. Yeah, yeah; I know sometimes people mean well and just don’t know what to say, but that’s no excuse. No cancer patient needs to hear a comment like this, or certainly not this, no matter how well-intentioned the awkward speaker should be.
Susan Gubar has done it again. She’s written another fantastic post for The New York Times‘s Well blog. This one is about The Scar Project, which is near and dear to my heart. Perhaps it’s a theme this week: scars, invisible and visible, and how we cancerchicks live with them for the rest of our lives. The women pictured in The Scar Project will have a long, long time to figure out how to live with those scars, as they are all under the age of 40.
Says Gubar of the young women portrayed: “The youthfulness of David Jay’s subjects wrenches me. Unlike them, I had a good span of my adult life — more than 60 years — before treatment. Their bodies stopped being their own too soon. Did their selves also stop being their own too soon? Cancer scars are physical mutilations of and on the body; but, more than that, cancer scars the psyche, the soul, the spirit. The ‘me’ before cancer is not the ‘me’ after cancer. Nor can these identities always be sutured.”
Yes, Susan Gubar, I think it’s safe to say that our bodies and our selves did indeed stop being their own too soon. I was 40 when I was diagnosed, which is old by The Scar Project standards, but I can say with certainty that it totally sucks to have been denied a good span of my adult life before cancer . It’s a drag. Because estrogen feeds my cancer, and many other varieties of breast cancer, I had to shut off the supply of that vital hormone. Being forcefully fast-forwarded into menopause also sucks. Aging on an unnatural timeframe, well ahead of my peers, does too. Having to face mortality decades in advance extracts a heavy toll on us cancerchicks. We want to live long, healthy normal lives; we want to see our children grow up. We hope that cancer doesn’t have other plans for us. Gubar touches on this, too, writing this about the young women portrayed in The Scar Project photos: “The ones that grip me stare at the photographer — at me — defiant. They want to live. I want them to live. Like Barbara Ehrenreich, David Jay seeks to unsettle a ‘public anesthetized by pink ribbons and fluffy teddy bears.’” Unsettle away, Mr Jay.
Gubar writes that “David Jay’s portraits contain images of women whose bared breasts look crumpled, concave, synthetic, reconstructed without or with reconfigured nipples, stitched horizontally or vertically or at an acute angle, lumpy, lopsided, wounded, or hacked off. Bravery resides there, beauty elsewhere.”
Wounded. Hacked off. Those descriptions apply both to my body and my soul. My body is wounded, and like my cancer-ridden breasts, I am hacked off. That this disease happens. That it takes so much from those who are so young. That it steals so much beauty, both internal and external. That the scars that remain are so upsetting, so unsettling. That this disease robs us of our youthfulness and our peace of mind. That the cancer experience changes who we are, forever, and not always in ways that are good or positive.
Gubar says that before cancer, she may have been perceived as being “ungrateful for an intact body, taking for granted organs that functioned normally, arrogant about the boons of health, ignorant of the preciousness of life.” As the old saying goes, we don’t know what we’ve got til its gone, and so too it is with cancer. Pre-cancer, I didn’t think about an intact body, fully functional organs, the boons of health and the preciousness of life the way I do now. While there are days I’m grateful to be up and about and not confined to a hospital bed or tethered to an IV pole, there are many more days in which I’m hacked off. While I take notice of air filling my lungs and appreciate my stamina at the gym, that appreciation is tempered by sadness at what I had to go through. While I am happy that I’m capable of achieving strength and fitness again after the cancer, surgeries, infection, and treatment took their pound of flesh (literally), I’m pissed that my triumph is bested by the omnipresent fear of recurrence.
I can identify with Gubar 100 percent when she says, “I remember the ‘me’ before cancer nostalgically. My earlier self could … connect with family and friends spontaneously and lavishly. At times I visualize the diagnosis as a gun aimed at a flying bird — pitched down from the sky in an instant to lie fluttering on the ground.”
Susan Gubar ends her beautiful article by pointing out that “the young women in The Scar Project were gunned down while just trying their wings. With courage, the wounded survivors bear invisible scar tissue beneath the physical scars of cancer: the haunting lost person each might have become, had it not been for the disease. They live, but not the lives they would have led.”