Does It Ever End?

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?

 

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Always around

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. thing

 

 

 

 


Cancer is such a bitch

Yesterday I was picking up a prescription at Walgreens — finally one that has nothing to do with breast cancer or the post-mastectomy infection that plagued me for more than a year — and I smiled to myself as I waited in line behind the senior citizens getting their Lipitor and the mom with 3 small kids getting her flu shot (good idea, with those little snot machines attached to her every appendage, said the germophobe in me). I smiled to myself despite the fact that as soon as I walked in the door I was confronted by the display of “pink ribbon products” designed to “raise breast cancer awareness” and “help save a life.” Quotation marks very definitely mine, and intended to convey the maximum amount of snark possible.

I smiled in spite of having passed the pinked-up display of nail polish, glittery lip gloss, pink-ribbon bedecked emery boards, and “hope, faith, and a cure” shower caps (how in the world have I managed without one of those?). I smiled to myself because I was upright, in line at Walgreens under my own steam, having driven myself on a brilliantly sunny day without help from anyone. While my knee is still in recovery mode from the most recent repair, I’m for the most part healthy and able-bodied.

I’m healthy and able-bodied and going about my routine on a very ordinary day with no surprises like finding infection-riddled, 3-inch blisters that were hanging from my mastectomy scars like stalactites hanging from a cave wall. Like the sharp pain that literally felt like a knife blade stabbing through my chest wall as the nerves tried to regenerate after being sliced & diced, post-mastectomy. Like the shock of having caught a glimpse of my new profile in the glass of a store window. Like the pulse-pounding, breath-stealing fear of recurrence that plagues me and other cancer warriors on a regular basis.

No, no surprises yesterday as I waited in line at Walgreens. Instead of surprises, I felt a sense of happiness. A sense of calm. A sense of — dare I say — normalcy. Just an ordinary woman on a routine errand to pick up an RX for low thyroid. I’m far removed from the multiple trips a week to Walgreens that were necessary during the infection phase, and now that I get my cancer-related maintenance meds through the mail, Walgreens is not a place I make an appearance on a thrice-weekly basis.

I was a happy girl as the pharmacist handed me my new prescription, which will hopefully kick-start my lazy thyroid into gear so I can manage to not collapse at 8 pm every night like a cranky toddler. I was happy and calm and normal, until I swiped my credit card and the little machine asked me if I wanted to donate to the Susan G Komen for the Cure. There was the infamous pink ribbon logo atop neat little boxes offering a $1, a $5, a $10 or a $50 option to add to my pharmacy tab.

And just like that, my ordinary day turned on me.

This, my friends, is why I hate October. This is why pinkwashing makes me see red. This is why I rant and rail in this blogspace about the messed-up system that has deemed an entire month for “awareness.”

I AM AWARE OF BREAST CANCER.

Whew, I feel a little better. I wanted to do that in Walgreens yesterday, but I did not. I did not curse, stomp my feet, smash a single thing, or whack a single person. And for that I would like a medal. Or a trophy. Or a cold beer.

I’m glad that the grand poohbahs who run the Walgreens corporation place an emphasis on charity. I like charity. I think charity is a good thing. But come on, does it have to be Komen, and does it have to be so in my face all month long?? In all fairness, it’s possible that Walgreens does shove other charities down customers’ throats in other months of the year and this particular customer hasn’t noticed. But I’ve swiped my card at the pharmacy window many, many, many times at Walgreens and never been accosted by a “donate now” screen on the little machine. I’m quite certain I was swiping my card through that same machine many times the last 2 Octobers and did not see Komen with its hand out and its “Remember you had cancer, lady” banner flying.

Trevor and I had a lively discussion last night, and again this morning, about the whole pinkwashing/Pinktober/Komen/awareness issue. The course of the conversation ran from why all the pink makes me crazy, how unfair it seems that other cancers don’t get so much attention and hype, how the awareness idea has gone wrong, and which causes are worthy of pink dollars. The consensus was this: the time for awareness has long come and gone. We are all well aware of breast cancer. Komen did great things for breast cancer, and the awareness, in the early days. Members of the pink ribbon club owe Komen a debt of gratitude, IMHO, for de-stigmatizing the disease and for making it culturally acceptable to talk about breasts in a medical context. But there are many, many other deserving and hard-working charities that do more actual good for the women and men who suffer from breast cancer. I’m happy to see that some of those causes are gaining attention and getting a piece, or a few crumbs, of the Komen pie. However, we have a long way to go, which is why I’m compelled to yell my head off in this little blog about things like how precious little of Komen’s huge budget actually goes toward research. How infuriating the pinkwashing pandemic is to those of us who’ve walked miles and miles in pink shoes. How the blatant sexualizing of breast cancer makes me want to throw up and punch someone at the same time. How seeing a grown woman in a “Save the Tatas” shirt causes me to go all Serena Williams on her in the grocery store.

This is the reality of October for breast cancer survivors/warriors/victims/patients. And it stinks. I find myself counting the days until this month ends. That it’s also the month in which my sweet mama died from the insidious ovarian cancer that stalked her for years just adds to the misery. What I wouldn’t give for one day, just one day, in which cancer didn’t smack me — and millions others like me — in the face. Even on an ordinary day, cancer has the ability to knock me senseless and dare me to right myself and keep on keepin’ on, yet again. Cancer is such a bitch.

 


Sheep-scaping

I need a break from cancer: from thinking about it, from writing about it.

Thank you, Eddie Miller, for providing that break.

photo: The New York Times

Miller is the brains behind sheep-scaping, the newest trend in landscaping. Instead of a crew of guys, Miller employs Panda, Nerd, Princess, and Carol. They’re Jacob sheep by breed, “organic lawn pruners” by trade.

When he graduated from Boston University with a double major — Economics and Environmental Science –last year and couldn’t find a job, Miller founded Heritage Lawn Mowing using sheep instead of a lawnmower. Sheep are cheap, sustainable, and much greener than conventional lawnmowers. Business was booming in Oberlin, Ohio. He started small, with two sheep who grazed in his parents’ backyard, and admits that the impetus for buying the sheep was that his (now ex-) girlfriend thought they were cute. Once the first two sheep chowed his parents’ lawn, Miller started moving his tiny, hungry flock to the yards of friends. While walking his sheep from house to house, he realized he had an innovative business model on his hands. Thus, sheep-scaping was born.

Customers pay $1 per sheep per day to have their lawns sheep-scaped. Most jobs require two sheep and cost on average $8 — far less than the going rate for commercial landscapers. Miller says that Jacob sheep eat broad-leaf plants, dandelions, clovers, and grass. They seem to know not to eat flowers and ornamental plants. “They have a built-in weed whacker,” he said. Because they lack teeth on the top, they don’t rip grass out by its roots.

They’re a delightful breed of sheep, according to the Jacob Sheep Breeders’ Association: “The American Jacobs are an old world sheep which, unlike many other old world breeds, have not undergone improved breeding and out crossing to satisfy the commercial marketplace. They have a more primitive body shape, are slender boned and provide a flavorful, lean carcass with little external fat. The carcass yield from hanging weight to freezer is high when compared to the more improved breeds.”

Ewwwww.

I didn’t need to know that much.

Let’s focus on how cute they are, instead of what good eatin’ they can be.

photo: JSBA

After achieving the holy grail of publicity, an article in The New York Times, Miller and his business seemed destined for success. However, further research on my part revealed that Heritage Lawn Mowing is no more. After weathering a few setbacks, including some sheep sickness, his business suffered a fatal blow in the form of a $150 ticket for “animals at large.” His sheep escaped through a gate and were found wandering the streets. The $150 fine was earmarked for the purchase of a tractor cart that he could use to transport the sheep and their hay as he migrated west to Jackson Hole, WY. Miller made it to Jackson Hole, but the sheep did not.

So now Miller is a sheep-less shepherd in Big Sky Country. He’s set his sights on elk, which apparently are rampant in Wyoming. He wants to work with the National Parks system to develop a permaculture farm with elk and pine trees. I hope he makes it.

 

 

 


The phoenix

Yesterday’s visit to the doctor was the usual highlight of my day. We laughed, we sparred, we talked about my new Fiat, and I once again stood buck-naked in front of his omnipotent eyes for my three-week post-op checkup. Here’s where it got interesting: I told him that while I appreciate his valiant efforts in the OR, I’m not happy w the results. Shape, size, asymmetry, bumpiness…. I’m sure I wounded him deeply, but had to get it out there. And of course, it goes without saying that I’m not dissatisfied with his work, quite the opposite, but with the ongoing, multi-step drudge that is reconstruction.

I asked about options if the fat transfer doesn’t yield good results. It’s a relatively new procedure and data is scarce, so it’s hard to predict the final results. But I need options. Can he suck out the fat he’s transferred? Can I go back to being totally flat-chested? Because honestly, I’d rather be flat as a board than have an elliptical uniboob. The cleavage line looks great, but only from a distance, and I’d sacrifice it to get back to the point of being satisfied with my chest.

photobucket.com

I know it’s hard for a plastic surgeon to grasp that a woman in the USA doesn’t want the biggest knockers she can possibly get, but I keep hammering away at the fact that I am indeed that woman. I’m all for a curvy silhouette but do not want big boobs.

To fix the aspects I’m dissatisfied with, we need to inject more fat, which results in a bigger bust. I don’t want that. I’ve said from Day One that I don’t want that. In fact, I think my exact words to the doc in my consultation right after diagnosis were “If I wake up from surgery with DDs I will kick your teeth in.” Direct quote. In fact, I need to get him a little pillow for his office couch with that message needle-pointed on it. That, and my other recurring message to him, also uttered at that first meeting: I know I’m not your only patient, but I’m your most important patient. I have threatened to get that needle-pointed for him, too.


Not quite able to wrap his brain around my crazy-ass request, the doc asked if I’m talking about sucking out the fat transfer part or the entire DIEP flap. I said the latter. If I’m going to go back to being totally flat-chested, I can’t have former-tummy-nee-breasts hanging around. To say he was stunned is the understatement of the day. Probably of the week. Maybe even the year, and perhaps this question would score high on the top 10 list of most shocking things I’ve ever asked for. googleimages.com

I reminded him that I understand that reconstruction — and revisions — can be a process. In my case, a multi-step process. As much as I’d love 1-stop reconstruction, that was not in the cards for me (thanks for nothing, mycobacterium, you wily bastard). Revisions to reconstruction are a process. I get it. Change comes incrementally and require more than 1 surgery. I get it. But being an “I wanted it yesterday” kind of girl, I’m impatient. And being a procedural rather than big-picture kind of girl, it’s hard for me to imagine how this is all going to turn out once the scalpel is laid down, the anesthesia wears off, and the final revision is complete. Whenever the hell that may be.Needless to say, the good doctor wasn’t crazy about my idea of sucking out and throwing away all of his hard work. We discussed the biggest source of unhappiness with my newly created breasts: the shape. Granted, it’s mind-boggling to me that a surgeon can cut a gal open from hip to hip, harvest the skin, fat, and blood vessels from her belly, stretch the remaining skin back together and stitch it up into straight line, replant the blood vessels into the chest wall, and form the skin and fat into any semblance of breasts. That truly boggles my mind. And yet, it happens, every day.
While I understand on an intellectual level how difficult this surgery is, and that the shape of the belly-turned-breasts may need some fine-tuning, and while I have every confidence in the doc’s skill and artistic ability, I still have a hard time believing that what I see today will ever look right. I know i twill, but I just can’t see it right now. I can’t envision how the oval-shaped uniboob will ever evolve into separate but equal, nicely rounded, not-too-big breasts. I just don’t see it. I’m accustomed to the sports-bra-induced uniboob, and I realize that sometimes bad things happen to good boobs, even Oprah’s. 

All this talk we Cancerchicks hear about how lucky we are to get new boobs is utter horseshit. I’m on the record saying that is a humongous load of crap. I was perfectly satisfied with my pre-cancer body, and there’s not one thing I can name that is better now. Ok, except for the absence of the tumors that would have eventually spread and killed me. That part is definitely better. And I’m no longer afraid of needles. Having been poked and shot up more times that I could ever count, and with a boatload of port flushes and blood draws and monthly B12 shots and quarterly Lupron shots and injections for scans ahead of me, I don’t even flinch anymore. Not even the thought of a 20-gauge needle piercing my skin and extracting my lifeblood scares me anymore. But conquering the fear of needles doesn’t really count as a way in which my body is better after my cancer “journey.” 

I’ve never been one to be hung up on body image (thankfully, because that can mess you up bad). I’ve never aspired to be a super model, which is a good thing because I’m pretty sure there’s not much of a market for 5-feet-tall candidates who aren’t stick-thin. I’ve always viewed my body as a workhorse: the vessel that contains the essence of who I am; the engine that drives me in sport and play; the carrier that allows me to complete the mundane tasks of domestic life such as unloading groceries and maintaining my home; and most importantly, as the oven and keeper of 2 precious babies who are growing up to be amazing people, if I do say so myself. 
From Day One of my cancer “journey,” I knew in my heart of hearts that losing my breasts but keeping my life was a trade I was willing to make. I knew beyond a shadow of a doubt that I am more than my breasts. While clothes may make the man, breasts do not define the woman. I certainly wasn’t happy about being diagnosed with breast cancer and undergoing a bilateral mastectomy, but I wasn’t sad about losing my breasts. I looked at them the same way I look at a spot of mold on a hunk of my favorite manchago cheese: cut it off so it doesn’t spoil the rest. 

I will admit, however, that I bought into the whole “new boobs” scam. I thought, well at least I’ll be nice and perky in the old folks’ home. No one tells you, though, that the “new boobs” may never be better than the old ones. Hell, they may never even be equal too, and dammit, they might even be lesser than. This is a closely-guarded secret of the “new boobs” scam, and I’m happy to expose this untruth for all the world to hear. 

Now before you start sending me hate mail or telling me I’m flat-out wrong, I will concede that for a lot of women, reconstructed breasts are better than their saggy, flabby, pre-cancer breasts. I’ve seen plenty of photos on the web from countless plastic surgeons, so I know this much is true. But guess what? I’m not one of those women. Most of those women are 20+ years older than me and 40+ pounds heavier than me. For them, the “tummy tuck” part of DIEP reconstruction is a godsend. For me, not so much. I’d happily go back to having a slight pooch if it meant not having a 17-inch scar across my belly. No question. 

Lest I’m not clear, let me reiterate: I’m thrilled with the fine work that the highly skilled docs did. Going from a concaved chest wall that had endured multiple tissue excisions to an adequately stacked chest was a small miracle, performed by my 2 docs and their professional team. Knowing that there were 4 people conducting the transformation was immensely reassuring as I underwent the DIEP. This talented group made it possible for this beleaguered phoenix rise from the ashes, no doubt.

But this phoenix isn’t happy with reincarnation alone. This phoenix craves the return to what used to be, but what is no more. 




cancer fatigue

I got a new jacket for tennis, since it’s getting chilly around here in between hot flashes. I noticed this tag on the jacket and am a bit freaked out that my first thought was that this jacket had some kind of special feature for my port. So sad. Even after I read the “access for embroidery” words on the tag, my brain was still trying to figure out what this had to do with my port: is there a special pocket for my port, like how some workout clothes have a teeny pocket for an iPod? How cool is that? But weird, too, since I can’t exactly take my port off and zip it into a pocket — it’s sewn into a vein!

Uh, not cool. It’s sad. Way sad that my brain is so conditioned to think about all things cancer-related that this is where it goes. Boo! Upon further contemplation, I realized this pocket is a shortcut for an embroiderer, to make it easier for them to stitch a logo or something on the jacket. It has nothing to do with my port. Sheesh.

On a happier note, I experienced something pretty great today: I took my friend to her doctors’ appointments. It was not only nice to spend the day together but also fan-freakin-tastic to be just the driver and moral support and not the patient. I’ve spent a lot of time in doctors’ offices lately, and while I still have my share of appointments on the horizon, I’m ecstatic that I’ve reached the point of being able to give back to my friends, who have given so freely & generously their love, presents, support, presents, meals, presents, rides, presents, child care, and presents.