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Kicking cancer’s sorry ass

10 Jun

I “celebrated” my one year chemoversary this week. Last year, on June 6, I was sitting in a blue Barcalounger up at Cancertown for the very first time, waiting for the nurses to flood my body with a deluge of drugs: some poisonous, some designed to help me withstand the poison.

Celebrate, of course, isn’t quite the right word. Who celebrates the onset of excrutiating bone pain, nausea, fatigue and hair loss? 

I am thrilled, of course, to be a year away from all of the pain and the powerlessness of last year’s chemotherapy. Although to be honest, I’m sort of going through it again now (sans the hair stuff) thanks to my latest obsession: boxing.

I’m not sure where my fascination with boxing came from. I used to work out at a gym where they had a speed bag tucked away in a far corner and I would play with it in between lifting weights and doing cardio, finally figuring out how to pummel the thing without having it pummel me back. It was therapeutic to pound away at all the stressors in my life — a cranky boss, a misogynistic coworker, a bad boyfriend.

After I quit the gym, I missed pounding away at the bag. So much so, that two decades later (at the age of 51 and a weight of about 190 pounds), I took a couple of boxing fitness classes at a Seattle institution known as Cappy’s. The class nearly killed me — I practically had to use the wheelchair lift to get on and off the bus afterwards — but I loved it. Unfortunately, my Achilles tendons didn’t. The jumprope warm-up exacerbated an old injury so I had to put my gloves on the shelf.

I didn’t shelve the exercise, though. I started walking and then running and then tap dancing and swing dancing. I also began watching what I put in my mouth and, to be honest, put a lot less in my mouth (I even managed to kick a lifelong friend — starchy carbs — to the curb). Within six months, I’d dropped 50 pounds and was feeling a lot better about myself and my body. At least, I was until I found a weird little tuck on one of my breasts.

Cancer had dealt me a firm left hook. And a right hook, as well, as it turned out. I had tumors in both my girls. But I made it through the surgery, the chemo, the radiation, and the recovery and now I’m hitting my one-year cancerversaries fast and furious.

You might even say, I’m knocking them out one at a time, thanks to the punches and combinations I’m learning in my new boxing class at Belltown’s Axtion Club.

That’s where I celebrated my chemoversary on Wednesday. And yesterday, I went back for my sixth session, an amazing feat considering that — just as before — the very first class nearly did me in. Each hour starts with an intense warm-up that begins with jumprope (my Achilles tendons have healed, apparently) and then folds in a slew of other exercises. There are footwork routines, medicine ball drills, punches and my personal favorite — one-handed push-ups. (The first time the trainer — a gorgeous South American demigod of a man — demonstrated these puppies, I nearly did a spit-take. Who does that?)

Thanks to the double mastectomy, the chemo, the radiation, and the fact I haven’t done a lick of upper body work for more than a year, I’m not even close to doing a one-handed push-up or these other ones that involve twisting one leg into some ungodly froglike position. I’m barely able to do two-handed push-ups. Girly style. But I give them my all. Ditto for the rest of the warm-up and the sparring that comes later. And so far, I haven’t embarrassed myself too much. Or at least I haven’t thrown up in class (according to the trainer, it’s happened).

But it ain’t easy. Nor pretty. Not knowing what I was in for, I wore makeup to my first class and by the end of the hour, my eyes were burning from a steady, sweaty stream of foundation and mascara and eyebrow powder (chemo took my brows so if I want ’em, I have to paint ’em on). These days, I go to class with only a hint of lipstick and not much else (yes, people, I am clothed). I even wear a headband, Olivia Newton-John style, because I’m such a Sweaty Betty, either due to the incredible workout my out-of-shape body is getting or the tamoxifen I take every day (it doesn’t give me hot flashes, but I’m definitely feeling the occasional hot flush). 

At the end of the hour, my head and body are sopping wet, my face is flushed and puffy and I look like a small, sweaty version of Billy Crystal, thanks to the out-of-control chemo curls. But I don’t care. Despite my long standing position as a girly girl, despite my overwhelming urge to “pass” (and trust me, the missing eyebrows are a dead giveaway), I’ve decided I’m not there to look pretty. Or normal. Or nice. I’m there to learn how to box. I’m there to get strong. I’m there to do whatever I can do to kick cancer’s sorry ass.

Am I crazy for pursuing a sport that makes me feel as nauseous, as fatigued, as overwhelmed by pain as the chemo I went through last summer? Maybe. It does feel strikingly similar to the infusion aftermath we all know so well, particularly a chemo session capped by one of those nice juicy Neulasta shots. You know, the ones that give you instant arthritis in your hands and feet.

The day after each boxing class, my hands ache from the punches I’ve given (and received). My arms can barely lift the blow dryer to dry my hair (ah, but what a miracle it is to have hair). It even hurts to pull my pants up after I pee. I’m beaten down, I’m bruised, I’m once again grabbing the furniture to hobble around my house. But then I take a few Ibuprofen and drape my body in ice packs and soak in a hot, hot bath filled with Epsom salt.

And then I get back up and do it again a couple of days later. Just as I did with the chemo. Just as we all do. Except this time, I’m going through the pain by choice. And this time, it’s not making me weaker, it’s making me stronger. This time, I’m transforming my body on my terms — through strength and endurance and sheer will as opposed to a surgeon’s scalpel. And this time, I can stop whenever I want. It’s just that I don’t want to stop — not yet anyway.

Not until I can get my scarred and poisoned and radiation-ravaged body to squeak out at least one of those wacky one-handed push-ups. Not until I can pound out a bit more of my grief and frustration and fear and, yes, pure unadulterated rage at being sucker punched by cancer.

Did your mammogram catch your breast cancer?

10 May

So I went to a boob show last night, otherwise known as the Breast Reconstruction Group at Seattle’s Polyclinic.

I’ve been once before and found it a great place to learn about all the different types of reconstruction out there — and trust me there’s a lot — as well as talk to women who are going through the various stages of breast cancer school. (Hey, if they can call it a journey, I can call it a school.) 

Some of the women were newly diagnosed and surgery-bound, asking questions about immediate reconstruction, just as I had when I went to my first BRG right after my diagnosis last year. Others were there to show off their newly reconstructed breasts so the freshmen and post-treatment/pre-reconstruction sophomores and juniors could see what kind of results they might expect from tissue expanders and implants or tram flaps or lat flaps or what have you.

While it’s always interesting to hear about reconstruction (especially now that I’ve cleared the six month post-rads mark and can actually start thinking about getting new girls), hearing each woman’s cancer story is even more riveting — and heartrending. Some of them had had more than their share of experience with the disease. They’d lost mothers (or even fathers) to breast cancer. Others were hit by a diagnosis like a shovel upside the head.

What struck me last night — and this seems to happen every time I hang with a group of BC survivors — was the number of women who didn’t find their cancer via an annual screening.

As some of you may know, I’m one of those women. My cancer didn’t present as a lump but as a small “tuck” just under the left nipple. After going to my ob/gyn (who assured me it was nothing but a cyst), I went on to get a diagnostic mammogram and ultrasound. Just like all the other times I’d had a mammogram (including the one 12 months previous), mine came back clean as a whistle. No lumps, no bumps, no funny business at all. But when they took me in for the ultrasound, it was a much different story. I had four masses — two on each side.

Here’s the problem: this is a story I’ve heard again and again from breast cancer survivors. Somebody will go in for their annual mammogram and walk out with a clean bill of health. Then three or six or nine months later, they’re diagnosed with stage 3 breast cancer, an aggressive cancer that could have — should have — been caught much earlier. Worse yet are the women who die because they put all their faith in a clear mammogram, even though one family member after another has been hit with this wretched disease. 

After my diagnosis, I immediately began lobbying my four sisters to go in and get checked out, pushing them to get their doctors prescribe ultrasounds as well as mammograms. My gut told me that the five of us share more than just a dark sense of humor and a penchant for antiques. I have dense breast tissue — which is why the mamm didn’t reveal the masses lurking in my breasts. I’m guessing my sisters are every bit as dense as me (so to speak).

Unfortunately, thanks to the way things are set up (with the insurance companies, with the medical providers, with the gods, etc.), you can’t simply request an ultrasound in lieu of — or in addition to — a mamm. Not even if you pay for it yourself. One after another, my sisters were told they could get mammograms, but unless there was something wrong with their breasts (or they had tested positive for the BRCA gene mutation), ultrasounds were not an option for them. Even though their sister had just been diagnosed with BC.

This kind of crap drives me crazy, especially as I read stories about the push to get moms to go in for mammograms as a way to celebrate Mother’s Day. Mamms are all well and good for some women, but they don’t seem to do squat for those of us with dense breast tissue. And there are a lot of us out there with this stuff. In fact, according to AreYouDense.org, a website devoted to exposing what it calls “the best kept secret,” two thirds of pre-menopausal and one quarter of post-menopausal women are saddled with dense breasts. Boobs that are full of connective tissue that appears white on a mammogram — same as a tumor — making it very difficult to see who does and who doesn’t have cancer.

And yet, millions of women consider their annual mammograms the end-all, be-all when it comes to their breast health. They trust mamms and mamms alone to tell them whether they have breast cancer.

Unfortunately, it doesn’t seem like those suckers can be trusted. Not on their own, anyway.

I’m not anti-mammogram. I know of at least one person who found their cancer during their annual screening so they absolutely do work for some women. I just don’t know how many. Or how often. Or how much the technician or radiologist has to do with the final results. Nor do I know why women aren’t automatically offered a choice of a mammogram or ultrasound (or both) when it comes to their annual screening. Especially when some states are more than happy to force a woman to have an ultrasound — at least a transvaginal one — if they’re thinking about terminating a pregnancy.

Last night at the Breast Reconstruction Group, a couple of the women talked about how confusing the world of breast cancer can be. “You have this choice, you have that choice,” one said. “I just wish there weren’t so many choices, so many decisions.” I understand exactly what she’s talking about. It’s confusing and upsetting and mind-numbingly horrific to have to sort through all the options one by one, especially as you get deeper and deeper into surgery, treatment and, finally, reconstruction.

Here’s my thought, though (and no doubt it’s a naive one). If women had a few more choices up front, maybe there would be fewer choices to be made down the line. If women were routinely told about their dense breast tissue and routinely allowed to have whatever type of screening they needed — or their bodies necessitated — maybe there would be fewer late stage cancers. Fewer mastectomies. Fewer rounds of chemo. Fewer deaths. And yes, fewer hissy fits pounded out by angry boobless wonders like me.  

So I’m curious, dear readers. Did any of you discover your breast cancer via your annual mammogram? Or did you discover it through self-exam? Or via MRI or ultrasound or a physical exam? Does anybody know why women — especially those with dense breast tissue — can’t automatically get an ultrasound and have it covered by insurance? Inquiring minds want to know.

It’s my party and I’ll cry if I want to

15 Apr

So I had quite the party last night. There was music, there was wine and there was me, curled up on the couch with a heating pad, an old timey quilt and an ever-diminishing box of chocolate cookies. Yes, as you’ve probably guessed, I was the guest of honor at a good old-fashioned pity party last night, brought to you (or me, rather) by Living with Cancer and My Bad Attitude Productions.  

I’m still not sure what exactly happened or why it decided to happen on what must have been the most gorgeously vibrant spring day in Seattle history. I woke feeling a little under the weather, with fever, chills and a bit of a sore throat and for some reason couldn’t convince myself that going out for a run would be the thing to lift my spirits and clear my head. Instead, I pointedly ignored my running shoes (and the running laptop) and started watching Sex and the City (the movie), which didn’t exactly help my mood. (How could Big do that to Carrie? Why is Carrie reacting like such a dork? And what the hell is with that bird on her head?)

Before I knew it, morning had blended into early afternoon, which then coasted slowly towards late afternoon. And I still hadn’t left the house. I’m not even sure I ate anything, although I did take my medication: the anti-anxiety pill, the tamoxifen, the two tabs of Vitamin D and one tab of Vitamin B12, all chased down by a fish oil tab the size of my little finger. I take all of this crap every day (and more on days when I have bad chest pain or a migraine or can’t sleep), although the only pill that really counts is the tamoxifen, which acts like a hawk-eyed chaperone at a seventh grade dance, perpetually shouldering its way between those two old lovebirds — estrogen and cancer — so they can’t hook up and produce a slew of baby tumors.

And that, I believe, is what was … or is … at the heart of my funk (truth be told, I haven’t quite kicked it yet).

Not that I have any reason to be in a funk. Last Wednesday, I had a stellar one-year follow-up with my breast cancer surgeon, who told me that my left side had healed so well she couldn’t even tell that I’d had radiation there. Plus I’m working as much as I was pre-diagnosis; I just got back from a trip to Arizona and Texas; and spring has finally sprung in Seattle, chasing the constant drizzle and gray away with glorious sunshine and days that stretch on forever (or at least until 8 p.m.).

And yet yesterday (and even Wednesday while talking to my doc), all I could think about was the dreaded R-word: recurrence.

Obviously, with no more “mamm” to gram, that particular method of breast cancer screening is off the table. And in the year since my surgery, I haven’t received an ultrasound or MRI to see if any new tumors have sprouted in my chest. I also haven’t received  any assurances or guarantees that I’m completely out the woods and that I’ll never again have to climb onto the bad carnival ride that is cancer treatment. Instead, I’ve been living in Limbo Land, where ever ache and pain is ripe for a new kind of dark, desperate scrutiny.

My BC surgeon said that a physical examination — which she performed while we chatted about reconstruction, swing dancing and whether or not I could take up boxing — was the best way to determine if I was developing anything hinky in my chest. But what about all the other areas of my body? My liver, my lungs, my bones, my brain — all those places where breast cancer likes to pop up and wreak havoc like a bitter, inebriated ex-boyfriend at your first major book launch.

That’s where things get a little muzzy. According to my oncologist — who’s gone over my recurrence rates with me on more than one occasion — I need to tell her if I start “feeling bad” or suddenly develop a weird persistent pain. Or, I imagine, I end up with a broken rib after getting a hug or a have a seizure while grocery shopping.

Do fever and chills and a sore throat fit within the “feeling bad” category, I wondered yesterday, watching bright sunshine blur into gray dusk. (Or was the fever not a symptom of a cold at all, but one of those infamous hot flashes I was told I’d get as tamoxifen hip-checks me into menopause?) And while we’re on the topic of hinky things developing, what about that sore spot under what used to be my left breast. Was that a tumor starting to sprout or had I knocked myself with the vacuum cleaner handle yet again?

Oh the places you go when you’ve had cancer.

And the things you say. Friday night over drinks with a girlfriend, I casually mentioned that I knew I wasn’t going to live all that long.

“Once you have cancer, you tend to get it again,” I told her, sipping my martini and grazing on a goat cheese, mint and bacon-sprinkled bruschetta. (Might as well live it up, since I’m going to die in ten minutes, ten days, ten years or whatever, right?)

“I’m feeling really blue,” I texted another buddy last night while cancelling plans. “I don’t want to die young and I know I’m going to now.”

Who does that? Who dumps that kind of crap into the laps of their friends? Certainly not me, unless I’m in the throes of a deep emotional funk. Which may or may not be something I should report to my oncologist (Hmmm … I’m normally so upbeat. Perhaps my foul mood is symptomatic of a brain tumor?).

It’s probably just the cold (or allergies) taking me to this dark place. Or the spate of friends and former neighbors who’ve recently lost (or are in the process of losing) a parent, grandparent, spouse or beloved pet. Maybe it’s the one-year anniversary of my double mastectomy, which looms on the horizon like a tax deadline. Or hey, maybe it’s the frigging tax deadline itself.

Whatever the case, I’m blue because I hate not knowing what the hell is going on with my body and knowing that I’ll never really know as long as I live, which I hope will be a long, long time, but chances are it won’t because of this crappy disease.  I’m blue because I’m a bit of a control freak and cancer is not something you can control. Or predict. Or prevent, no matter how much sauteed kale you consume (and trust me, I’m consuming a lot these days). I’m blue because recurrence happens; it’s happened to friends and family members and to some of my cancer buddies on Twitter and while some of these people have been able to stay on top of the disease, it’s not always possible to kick cancer to the curb once it starts “traveling from organ to organ like a gypsy caravan,” in the words of the late, great Dave Hodgson.

I’m blue because it’s gorgeous out and I should be out there celebrating the sun and the spring weather and the life I have while I have it, but instead I’m moping around the apartment “giving in to myself,” as my mother used to say. I’m blue because I’m usually the one trying to cheer other people up when they confess these kinds of dark thoughts and for some reason, I’m not quite able to do that for myself.

I’m blue because I’m angry and scared and don’t feel well and because I have to pay a bunch of money in taxes and I gained like four pounds while visiting my sister in Texas. I’m blue because I don’t have a Mr. Big or a body (or budget) like Sarah Jessica Parker and because despite having cancer, I’m just as shallow and self-absorbed as I ever was.

Oddly enough, though, now that I’ve gotten all this crap off my chest, I actually feel a little better. Thanks for the ear, folks and for stopping by my little pity party, which as of this moment, is officially closing down. Time to go run in the sun. Time to stop whining and live.

Happy cancerversary to me

11 Feb

Me, pre-diagnosis (Nov 2010)

So today is my one year “cancerversary”. One year ago today, I got a phone call from the radiologist (aka Dr. Debbie Downer), the woman who initially found the three masses in my chest via ultrasound and then performed the biopsy on those (and a fourth one she discovered at the time) a few days later.

Needless to say, the phone call did not go well. For starters, she used the word “positive” which for anyone NOT waiting to hear back about a cancer diagnosis is a perfectly fine word. If you happen to be waiting to hear whether you’re going to maybe die or lose some of your body parts, though, “positive” isn’t all that, well, positive. And as it turned out, I was a very positive patient, with all four of the masses in my two breasts coming up roses for invasive lobular carcinoma, otherwise known as ILC, or “evil cancer” as my breast cancer surgeon likes to call it.

I still have the notes from that horrible conversation, slip-cased in a plastic sleeve and stuffed into a giant three-ring binder. In fact, I have everything from this past year stuffed into that binder  — scribbled notes from phone calls with nurses, social workers and breast cancer survivors; MRI reports where they talk about my “unremarkable uterus” and my “grossly normal bowel”; pages and pages of printouts of upcoming doctors’ appointments; get well cards from friends and colleagues and my wonderful nieces and nephews (I still love 9-year-old Charlie’s post-surgery card the best: “Doctors are dumb,” he wrote. “You are so not sick. Also you have a lot of sex in you!”).

Me, post-surgery, pre chemo, May 2011. WTF, indeed.

Somewhere amidst all of the pathology reports and medical handouts and hospital bracelets (yep, I saved those, too), I even have a lint roller sheet covered with the last vestiges of my dearly departed blonde hair. After shaving my head, my scalp itched like crazy so my wig guy said to just take the rest off with masking tape. Somewhere in a closet, I even have one of my drains and the port they took out of my body three months ago (both completely scrubbed up and sterilized, of course).

I’m not sure why I’ve saved all of this stuff, but it just seemed important at the time. I guess I wanted some kind of record of my awful year — my annus horribilis — and at present, this notebook, these odd bits of breast cancer detritus, are it. Now that I’m three months out of treatment, I have very few things to save in my notebook. Instead, I’m finding myself taking things out and reading through them, trying to decipher what the hell, exactly, happened to me over the course of these last 12 months.

While I was living it — those first tearful appointments with the surgeon, the indignity of the drains following the double mastectomy, my three months of chemo and then those long six plus weeks of radiation — I remember telling myself that I would never forget a single moment of the torture I was going through. That the anger, the shame, the pain, the fear, the weakness, the “otherness” (with my bald head and flattened chest I felt like a space alien half the time) would be seared into my brain as deeply as the radiation burns seared my chest.

Greetings from Planet Chemo (and obviously, radiation). October 2011

But the memories have already begun to fade — either due to medication or stress or chemo brain or the body’s miraculous ability to do what it needs to do to heal itself. Truth be told, there are probably some things I shouldn’t remember. Although if I want to, all I have to do is open my notebook (or close my eyes and begin to type) and a lot of it comes flooding back.  

Not that I’m anywhere near done with my great breast cancer adventure. Reconstruction — in some form — still looms ahead. One day, maybe even some day this summer, my flattened gnarled chest will no longer look like one of the talking trees from The Wizard of Oz or that old WWII cartoon, Kilroy Was Here, whenever I lean forward. Instead, I’ll have boobs and cleavage and fat covering my very visible ribcage. If there’s a god, I may even get some feeling back in my skin and nipples. Or finally be able to get rid of the weird constricting pain in my chest and armpits that comes from scar tissue and adhesions, pain that I and other breast cancer survivors use nicknames to describe:  Gulliver chest, rubber band pits, twang arm.

Not that things are all that bad. As I sit here typing and ruminating on the dark days that are behind me, I can definitely see progress. I seldom cry when I talk about the cancer or my lost girls anymore. I’m no longer a chemo invalid, hobbling around my apartment, hanging on to chairs for support and using a wrench to open water bottles. I no longer have to slather Aquaphor healing ointment onto a lobster red chest or pop Vicadin for the deep burning pain that comes with radiation. These days, I’m back out running and swing dancing and tap dancing and doing everything I did before (including making poor food choices — still need to work on that). These days, I’m no longer a bald space alien — I’ve got at least an inch worth of hair on my head and a pixie “haircut” that looks almost intentional. Granted, my hair’s a completely different color and a completely different texture than it was before (it’s much more gray, for instance), but it’s a start. Most importantly, it’s not going to start coming out in handfuls the way it did 10 days after that first dose of taxotere and cytoxan.

Me, in recovery. December 2011. Where's the frigging champagne?

The bottom line is I’m still here. And the cancer’s not. At least it wasn’t the last time I had my tumor markers checked. The doctors won’t tell me I’m cured or cancer-free (at least not for a few more years), but I can say that I’ve made it a year past diagnosis, which is more than I expected when the phone call from that oh-so-grim radiologist came in, 12 months ago today. And while breast cancer’s hardly something to celebrate, getting through the diagnosis, the surgery, the chemo, the radiation and yes, even the “recovery” process, most definitely is.

So even though it’s only 10 a.m., I’m tempted to pop the cork on one of the champagne bottles in my fridge. Or perhaps make myself a martini or Manhattan or mimosa (anything but a chemo cocktail).

I’ve made it a year, folks. I’ve made it a year.

What we talk about when we TalkAboutHealth.com

1 Feb

As many of you know, there’s nothing I like better than to blather on incessantly about my life, my dates, my “battle” with breast cancer (a word that always makes me feel like I’m jousting with this despicable disease), and anything and everything else under the sun.

Well, as luck would have it, I was actually asked to officially blather on about some of these topics by the fine folks at TalkAboutHealth.com, a website “where patients and caregivers get personalized, helpful, and accurate answers from experts, survivors, and partner organizations.”

The format is pretty simple. Members post questions and I (and countless others) answer them. So far, I was asked about the “tuck” on my left breast (the small, subtle clue that led me to discover my cancer), about my nipple and skin sparing surgery and about how — as a single woman — I managed to get the support I needed while going through cancer treatment.

I’ve still got a few more questions to answer (they’re about dating, so I’m saving the best for last), but if anybody wants to check out my thoughts on the above, here are the links. As always, thanks for the read and would love to hear your input!

Would you further elaborate about discovering the “tuck” under your breast and describe it? How did you know to tell your doctor about it?
I first noticed the tuck after losing about 45-50 pounds through diet and exercise. It was maybe about 3/4″ long and looked a bit like tiny elves had stitched a “seam” along the inside of my breast just under my left nipple. The tuck didn’t hurt and didn’t really bother me all that much until I noticed that whenever I raised my left arm, my breast would “crumple” in a bit. That seemed more disturbing to me.  Click here to read the rest.

Would you share your nipple and skin sparing surgery experience?
I was completely undone by my breast cancer diagnosis and even moreso by the news that my only surgical option was a double mastectomy (the location of the tumors, the number of tumors and the small size of my breasts disqualified me for lumpectomy early on). My breast surgeon thought I might be a good candidate for nipple and skin sparing, though, and I embraced that option immediately. Click here to read the rest

As a single woman, where did you get the support you needed while going through cancer treatment?
I’ve been single for most of my adult life and have even developed a bit of a writing platform regarding the single life with a book (How to Date in a Post-Dating World), an anthology of essays (Single State of the Union) and a humor column (Single Shot), published by the now-defunct Seattle P-I.

For me, singledom is a natural state. Instead of being cloistered away as one half of a couple, I have a huge circle of friends — people I’ve worked with, people I’ve gone to school with, fellow writers, gal pals, neighborhood buddies, drinking buddies, old boyfriends, sources that turned into friends, the list goes on and on. I also have four sisters, all of whom I’m close with. I had so many people I needed to tell about the breast cancer, in fact, I eventually started an email newsletter (the Cancertown Gazette). And then a blog (www.doublewhammied.com). Click here to read the rest.

Chuckles, the cancer clown

7 Jan

It’s a gray, muzzy Saturday here in Seattle and I have to say the external weather and my internal mood are perfectly matched.

I’m not sure what happened. Last night, I went out with a slew of journalistic types — smart, snarky sorts with more quips up their sleeves than tattoos (which is saying something for Seattle) — and I had a perfectly lovely time meeting new people and yammering with old buds. One of those buds was a colleague I hadn’t seen in more than a year, which meant we had a lot of catching up to do.

In other words, there was a lot of cancer talk.

As usual when I’m out with a group of people who know about my situation, I became Chuckles, the Cancer Clown, cracking wise about the double mastectomy, the chemo, the hair loss, the radiation, the daily doses of tamoxifen — the whole nine yards. Listening to me talk about my breast cancer experience, you’d think it was all a big hoot. You’d think I wasn’t a bit fazed by the loss of my beautiful breasts and the fact that my chest now looks like a 10-year-old boy’s that’s been badly ironed.

Sure, my nipples are crooked and there are wrinkles and folds where there used to be lovely feminine mounds. But so what? I’ve got fabulous new fake boobs, given to me by a friend of a friend who got them at Nordstrom for $300 each. “I call them my gummi boobs!” I tell my editor buddy. “Aren’t they great? I can just hand them to some guy if he wants to feel me up and I’m not into it. And when I get tired of ’em, I can just tuck ’em away in a drawer!”

Watching me laugh and joke about my wig — made from my own hair which I had to shave to save (one of the hardest decisions of my life) — you’d never imagine me pounding my bathroom mirror, sobbing “Come back! Come back! Oh god, please come back!” at my patchy bald pate during those horrible long months following chemo.

I hide the pain, the anguish, the grief, the whole horrible mindfuck that is cancer treatment quite well. At least when I’m out with friends.

Once I’m home, though, things are different. Chuckles slips away and I’m left with Cancer Chick, the girl who winces as she pulls off the wig (the double stick tape is attached to new growth now and takes out a chunk of hair with each wear). After the wig is gone, Cancer Chick then changes into a nightgown and diligently rubs castor oil all over her chest — or what’s left of it — hoping it will soak into the skin and the muscle beneath and make it possible for the skin to stretch enough to hold tissue expanders and eventually implants. Hopefully, not implants that will encapsulate or explode once they’re inside.

Of course, this may all be for naught. Thanks to radiation — you should hear my stand-up routine on that particular topic — the skin on the left side might not stretch. It might not heal. So I may be forced to have some kind of complicated surgery that harvests a chunk of muscle and tissue from some other part of my body in order to build a boob there.

“I may end up with a butt for a boob,” I told my friend last night and we both howled at the wackiness of that.

I’m sure part of it was the beer. Part of it was the discomfort of having to talk about cancer in a group setting. Part of it was my almost fanatical insistence on making others feel comfortable about the fact that I’ve somehow ended up with this lousy, terrifying disease. And part of it — and this particularly grim blog post, no doubt — is the tamoxifen that has me swinging back and forth like a emotional version of Poe’s Pit and the Pendulum.

Don’t get me wrong. I don’t think it’s necessarily a good thing to have a stick up your ass about your problems all the time. Black humor is what got me through my warzone of a childhood and it has served me well through this current cancer zone, as well.

But it’s also good to remember — to acknowledge to myself and to others — that sometimes my cancer is not going to be amusing. It’s actually going to make me cry in front of you. Or stay at home curled in a ball under my coffee table. And despite the fact that I’m no longer in treatment, my grand cancer adventure is not over by a long shot.

Although, thankfully, neither is Chuckles’ brave little standup routine.

Celebrity breast cancer twin: reader responses

10 Dec

I got some great responses to the essay I wrote about my “celebrity breast cancer twin” Giuliana Rancic, the E news! cohost who announced last Monday that she was going to have to have a double mastectomy, thanks to the advanced nature of her cancer.

Like me, some readers identified wholeheartedly with the shock, devastation and grief that goes along with knowing you’re going to lose your girls. Others brought up some valid points, for instance, the dearth of good, hard information that accompanied the announcement re Rancic’s forthcoming double mastectomy.

“I don’t have any problem with celebrities discussing their cancer,” wrote Jody here on doublewhammied.com. “The problem is that many of them, including Giuliana, don’t offer the kind of detail that could go a long way toward honestly educating others about early breast cancer. It is not about cancer stage but tumor biology; or the pathology of the tumor. I think to go on TV the moment you’ve stumbled out of the surgeon’s office is a mistake. The morning television shows do little to elaborate.”

I, too, am curious about what type of breast cancer Rancic has (I haven’t been able to find out any information on that), but do know the double lumpectomies that she underwent in October weren’t able to gain clear margins, hence the decision to move forward with the double mastectomy. 

Oddly enough, I got into a discussion regarding Rancic’s cancer with my breast cancer surgeon as she was removing my chemo port the other day (anything to keep my mind off the digging going on over on my right side). I wondered aloud if Rancic might have invasive lobular carcinoma (“my” cancer) because she had it in both breasts (ILC has a tendency to show up in tandem, aka, the old “double whammy”). My breast cancer surgeon wondered if it might be invasive ductal carcinoma since they initially tried to eradicate it with lumpectomies and radiation.

I guess that makes me an official breast cancer wonk. But I’m not alone.

Vanessa wrote to say she’s glad celebrities are coming forward about their breast cancer, but they’re not sharing enough. “I must admit I am a little upset that they aren’t talking about anything but the surgery,” she wrote. “What about the chemo and the radiation? … People need to understand that this is not a ‘take a pill and feel better in the morning’ type illness.”

And MaryBeth felt that Rancic’s “no big deal” attitude — not to mention her youth, beauty and privileged lifestyle — made it tough for the rest of us schmucks.

“It’s a total nightmare and underselling it like it’s some cool right of passage for the righteous, rich and beautiful does more harm than good for those of us everyday schlumps who have to schlep through it without the makeup artists, personal trainers, stylists, etc.,” she wrote.

As one of those everyday schlumps, I get what you’re saying, MaryBeth.  But for me, the bottom line is Rancic – beautiful or not, rich or not, primped and pampered and styled to within an inch of her life or not — is still losing her breasts. She may have better doctors, plastic surgeons, health care, physical therapy, makeup artists, life partners, publicity, etc, but she’s still going to wake up with those horrible drains attached to a flat chest covered with bandages and bruises and not much else. She’s going to have a wonderful erogenous zone replaced by a useless Dead Zone. And if she is able to have a baby (I think this is still on the table), she certainly won’t be able to nurse it.

So yes, she may be better off than the rest of us. But in many ways — important ways — she’s in the exact same boat as all of us, crossing those same choppy, dark, terrifying seas.

Anyway, that’s my rant for the day. As always, thanks for reading and writing and best to you all, especially those newly diagnosed women I’ve talked to recently. You are strong and brave and beautiful and absolutely capable of getting through this breast cancer crap (and, believe me, it is crap, whether you’re a star or a starving freelance writer). I believe in you and am here for you whenever you need me.

Also, one brief, heartfelt note of thanks to Stephanie, a 30-year-old single mom diagnosed in October of last year, who wrote, “I just wanted to send you an email thanking you for your candid insight and sharing your experiences for the rest of us out here … I would like to consider you my twin and think we will win these battles together.”

Cheers to that, twin!

Giuliana Rancic, my celebrity breast cancer twin

5 Dec

I got a call from my editor a couple of days ago, sharing some top secret (sad) news.

Giuliana Rancic, the young and vivacious cohost of E! News who’d appeared on the TODAY show in October to discuss her recent breast cancer diagnosis, was coming back on the show early Monday morning to talk about her latest news. She now had to have a double mastectomy.

Would I like to write about this? my editor asked. Absolutely, I told her.

As someone who only too recently lived through a cast-iron-skillet-to-the-head cancer diagnosis and a double mastectomy (not to mention chemo and radiation), I had plenty to say. (Check out some of my previous essays about breast cancer on Today.com and you’ll see what I mean.)

Here’s how my latest piece, entitled Giuliana Rancic, my celebrity breast cancer twin, starts. As always, thanks for the read.

Some women look to celebrities when they’re pregnant, identifying with famous moms-to-be who are due around the same date.

Others, like me, look for celebrity cancer twins, like E! News host Giuliana Rancic, who just joined the ranks of my small group of hapless — but hardly hopeless — heroes.

Don’t get me wrong; I wouldn’t wish cancer on anyone. But there’s something incredibly powerful about a smart, successful celeb letting down her perfectly coiffed hair to speak openly, honestly and even fearfully about a wretched, life-changing disease that has turned her world — and mine — completely upside down.

Wanda Sykes is another such cancer twin. Diagnosed in February of this year (same as me), the comedian went on Ellen back in September to talk about her double mastectomy. During the interview, which I’ve probably watched a dozen times, Sykes looks healthy and beautiful and strong. More importantly, she’s fazed but still funny, taking potshots at her cancer as if she were back roasting the president at the White House Correspondents’ Dinner.

NBC News’ tough, tenacious Andrea Mitchell is another cancer twin. Ditto for Christina Applegate .

And now there’s Rancic, the 37-year-old funny, self-effacing cohost of E! News and Fashion Police, who discovered her disease while prepping for a third round of in vitro fertilization treatments.

To read the full story click here.  

As always, I’m curious how others deal with their breast cancer. Have any of you adopted “celebrity cancer twins,” people who were diagnosed at the same time you were (with breast cancer or anything else)?

If so, have they inspired you? Helped you get through your ordeal? Made you so angry that you fought even harder? Would love to hear your thoughts.

In search of my new bionic boobs

2 Dec

So today’s a big day for me. In about two hours, I’ll be meeting with my plastic surgeon to see what effect the six plus weeks of radiation had on my left side. I’d say my left breast, but there’s not much breast left. There’s a nipple and skin and scars and scar tissue which has adhered to the muscle wall. Your basic beat-up 10-year-old boy look. But with a lot of luck, I’ll hear today that I’ll soon be getting a breast there, hopefully without too much trouble.

That last is a bit facetious since breast reconstruction is not an easy process, although many people still equate it with cosmetic breast enhancement, which is a much simpler, almost cut-and-dried procedure these days. Reconstruction, however, is much more complicated and can involve multiple surgeries and long recovery times. I’m praying that I’ll be able to get what I call the “easy-peasy” reconstruction method involving tissue expanders and implants.

With this method, you basically get a couple of empty tires surgically implanted behind your chest wall which the plastic surgeon pumps up once a week or so (via some kind of valve) until you have the right size. Then they swap out the full tires for your implants (either saline or silicone – still haven’t decided yet) during surgery. I’ll be doing this with my right side which didn’t go through radiation, but the big question is what will happen with old Lefty.

If radiation has screwed the pooch on my skin there (and according to my radiation oncologist, it does with maybe one third of the women who go through it), the skin won’t be able to stretch enough to hold a tissue expander. Which means they’ll be “borrowing” tissue and muscle from other parts of my body to “build a boob.” (When I first heard this, I immediately pictured them nicking tissue from my butt, my thighs, my right armpit, my left knee and sort of cobbling it all together like a boob hot dog. Such is not the case.)

Instead, they usually borrow tissue from one place, like your belly — especially for women who’ve had kids (instant tummy tuck!). Unfortunately (or not), I haven’t had kids and was told during my first consult that my stomach wasn’t big enough to use for the “build a boob” method, which is officially known as a tram flap. (This is another one of those backhanded cancer compliments, like “You’re so young, you’ll be a great candidate for chemotherapy.” The first time I heard that, I didn’t know whether to cry because of the impending chemo or preen because of the “young” word. At 53, you take what you can get.)

Anyway, since I can’t get a tram flap, they’d be looking elsewhere for that muscle and tissue. On my body, not anyone else’s (I’ve had plenty of sweet offers from friends willing to sacrifice their pot bellies for my new boob but the tissue’s got to come from me).  If I have to go with this method, it’ll mean scrapping my carefully saved (and diligently moisturized) skin and nipple on the left side and replacing it with a hunk of flesh from my latissimus dorsi in a procedure known as a “lat flap.” It’ll also mean multiple surgeries to create a nipple, then tattoo the nipple (and aerola). Plus recovery time for both my front and my back. Plus the loss of muscle on my back, etc. etc. 

None of this sounds like a good time to me. If I had my druthers, I wouldn’t have any of it. Not even the tissue expanders embedded in my chest because from what I’ve heard, they can hurt like a son of a bitch as well as feeling like a couple of rocks attached to your chest (can’t wait to see the expression on some swing dance lead’s face when I shove those puppies up next to him).

But the thing is, I want my boobs back — I miss them, I need them, and yeah, I feel like I deserve them, especially after all I’ve been through these last 10 months.

So, yes, I’ll do what I can do get them — endure the pain of the tissue expanders, suffer through multiple surgeries (if necessary) to build a boob out of bits and pieces of my body. And yes, even shamelessly put up a blog post like this, asking all of you to keep your fingers, legs, toes and whatever else crossed for me today.

As always, thanks for the read and for any and all good wishes you can send my way today. Talk to you soon.

Welcome to Limbo Land

17 Nov

“I have a port,” I tell the woman at the front desk of the Cancertown lab, feeling a bit like a character in a spy novel.

“And I have a fine Madeira,” I imagine her replying while surreptitiously handing me some microfilm.

Instead, she tells me to take a seat where I wait dutifully until an oncology nurse fetches me. It’s my first post-treatment check-up and as with all my doctor’s appointments, bloodletting is the first order of business, something easily and efficiently accomplished via the port buried in my skin under my right clavicle.

After leading me back to a small curtained booth, the oncology nurse first flushes the port (instantly filling my mouth and nose with the smell of Liquid Hospital) then begins taking blood, chatting all the while about her twin sister, a radiation oncologist in another city (“She’s Beam-O and I’m Chemo,” she tells me. “Beam-O and Chemo, get it?”).

After she has what she needs, I go back to the main lobby and loiter until yet another oncology nurse comes out and escorts me into the inner sanctum, where I’m weighed, cuffed (blood pressure not hand) and asked questions about everything from my sex life to my bowel movements.

“I’m a little nervous,” I tell her, after the Q & A is over. “This is my first post-treatment appointment and I don’t really know what to expect.”

I’m lying, of course. What I expect is that my oncologist will take one look at me and hand me a Get Out of Cancer Free card. Or maybe a diploma or certificate or testimonial like the Wizard of Oz gave the Tin Woodsman. I’d be equally happy with a report card stating that I’ve just graduated from Cancer U with all A’s (pending my extra credit Reconstruction homework). I want something, though. Something that confirms that the boob loss, the bone pain, the radiation burns and the hair loss — god, the hair loss! — have all been worth it. That I’ve kicked cancer’s ass. That I’m done.

 The look on the nurse’s face indicates that some of these expectations have been spoken aloud. Which is when I start to get the feeling I’m not going to be told “Good job, well done.” In fact, the look on her face makes me wonder if there is such a thing as done.

 “The doctor will be in in a minute,” she says, getting up. “She’ll explain everything.”

A couple of minutes later, my oncologist opens the door and we chitchat until I can’t take it any longer.

“So am I cancer-free or what?” I ask. “Am I cured?”

“We don’t really use the C-word around here,” she says, speaking slowly, like you would to a person with a recent head injury. “You remember when we talked about recurrence? When we went over the statistics?”

I remember. The chemo cocktail I chose — taxotere and cytoxan — offered a recurrence rate of 12%. The other cocktail, the one that contained adriamycin (aka the Red Devil) had a smaller recurrence rate (10%), but upped your risk of heart disease. And as they say in Skagit Valley (where I grew up), my family has bad tickers up the ying yang.

“Some of the breast cancer survivors I talk to on Twitter have mentioned something called NED,” I push. ‘”That whole no evidence of disease thing. Can I at least get an NED?”

She sighs.

“You’re low-risk,” she says at last. “I have other patients I’m a lot more concerned about. But really, what you need to do right now is just focus on healing. You have a lot of emotional healing to do.”

She then starts to tell me the lay of the land. I don’t know it at the time, but the country she describes has a name. Limbo Land.

I listen as she talk about how I’ll be coming in every three months for what sounds like the rest of my life. Just like today, they’ll take my blood to look for tumor markers and such. My job will be to tell her if I develop a weird persistent pain. Or become short of breath. Or start coughing a lot.

Metastatic breast cancer, I know, occurs most often in the brain, the bones, the liver and the lungs. (I’d memorized this my first day of cancer class.)

“Your test results will be back tomorrow,” she says, after spending a few minutes checking out my glowing red chest. “I’ll call you when they come in.”

“Okay,” I say, wiping my eyes. Somewhere during the exam, I’d started crying. I always do when reconstruction comes up. Apparently, I’m still mourning the loss of my girls. And praying that I’ll be able to salvage what’s left of them (i.e., my left nipple and skin) although I’m in Limbo Land there, too. I have no idea if my irradiated skin will hold a tissue expander and implant or if I’ll have to have a series of surgeries to build a new left boob. This will be determined by another doctor, another time.

Right now, though, it’s time to leave. Sans diploma.

I blow my nose and get dressed and make my next follow-up appointment with the receptionist out front. Then I lurch out of the office, trying to remember the important things that were said, only half of which I managed to write down, as usual.  Once I get back to my neighborhood, I duck into my favorite watering hole and practice coping mechanisms for a couple of hours. Then I go home and try my best to keep my head from exploding.

The next morning, my doctor calls and tells me my white cell count looks great. Ditto for the tumor markers.

“They were 12,” she says. “Anything under 40 is normal.”

I thank her giddily (good news, at last!) and try to hang up but she has more to share. Apparently, she’s reviewed my file and noticed that my CT scan from last March showed something funky on one of my lungs.

“You have a 4 millimeter lung nodule,” she says. “It’s probably just scar tissue but I’m going to have you come back for a CT scan in March.”

Okay, I say and put down the phone.

I was hoping for a testimonial. A report card full of A’s. A certificate I could hang on my wall, telling me that this cancer crap was history. That it was all over. That I’d won and was done. Instead, I got a lung nodule and a cold hard glimpse at my future, a future filled with quarterly blood draws and anxiously awaited test results. A future pungent with the aroma of Liquid Hospital and hot fear. A long, endless mindfuck of a future as comfortless and abrasive as the discount tissue dutifully stocked in each and every exam room.

I’d fought my way through surgery and chemo and radiation to get to the other side. But there was no other side, I realized now. There was only Limbo Land, where there were no answers, no gold stars, no C-word (at least not the one my oncologist was referring to) —  not for a very long time.

I stare at the phone thinking about how much I already hate this place, especially the sneaky way it came up behind me, squelching my breathless triumphs with a fat spiteful thumb.

And then I smile. Because it doesn’t matter whether I like this place or not, just like it didn’t matter whether I liked surgery or chemo or radiation or any of the other crap I’ve endured and overcome these last ten months.

Because I’m going to kick Limbo Land’s sorry ass.  I am.  And then I’m coming back for my goddamned diploma.