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Breast cancer comes to Downton Abbey

8 Jan

halsted radical mastIt’s always interesting to see how breast cancer comes across on television (less so during October, of course, when all of those creepy pink stereotypes are hauled out of the closet). 

BC has been the disease du jour everywhere from Murphy Brown (yes, I’m dating myself) to Sex and the City to Weeds to this season’s Parenthood. Now, we have a new TV character facing a breast cancer scare, although “new” may be the wrong word, since the show is set in 1920.

Yes, breast cancer has come to Downton Abbey (warning: spoilers ahead!).

In the two-hour premiere of season three, which aired this last Sunday night here in the U.S., kindly Mrs. Hughes, the estate’s housekeeper, finds a lump in her breast and, after a bit of persuasion from her friend Mrs. Patmore (the cook), goes in for a biopsy.

What did a breast cancer diagnosis mean in 1920? That was the question one of my editors at nbcnews.com posed to me in an email Monday morning. I did some research, interviewed breast cancer surgeon Dr. Deanna Attai and wrote this story. The bottom line: breast cancer in 1920 was probably a death sentence.

“I think most cancers were,” Dr. Attai told me when we chatted via phone. “Just because of the fact they were diagnosed so late. Most of the time, patients had metastatic disease. They had very advanced disease in the lymph nodes.”

At this point in time, we don’t know if Mrs. Hughes truly has breast cancer or not. She has to wait two months for the results of her biopsy (and I thought waiting three days was bad!). If she does have it, her treatment options might include radiation, which was in its infancy at the time.

More likely, though, she would be subjected to the Halsted radical mastectomy, named for the European-trained Johns Hopkins surgeon who performed and heavily promoted it in the U.S.

If you’ve ever been haunted by the stark image of a concave, surgery-ravaged chest (this is the first image that popped into my head when my surgeon told me I needed a double), that’s a Halsted radical mastectomy. Along with the breast (and the tumor), the surgeon would remove all of the underlying chest muscle and all of the lymph nodes. Scarring was extensive and side effects like lymphedema (aka “milk arm”) and even arm paralysis, were common.

Even worse, this debilitating and disfiguring surgery was often performed without the patient’s knowledge, i.e., a woman would go in for a “quick-section biopsy” and wake up “wrapped in bandages from midriff to neck — bound like a mummy in surgical gauze.” Not only did she not have her breast(s), she had little information as to how to deal with the pain, the swelling in her arms or even what she was supposed to stuff in her bra in lieu of boobs. 

Referred to in one breast cancer book as “the greatest standardized surgical error of the twentieth century,” the Halsted radical mastectomy is no longer practiced, although it took until the late 1970s for the barbaric surgery to be phased out (the book, The Breast Cancer Wars, does a good job of detailing the history — and persistence — of the radical mastectomy).

Today, most breast cancer surgeons practice breast conservation, a term that always makes me wonder if breasts are becoming an endangered species.

But I digress.

What does the future hold for Downton Abbey’s Mrs. Hughes? Like everyone else, I guess I’ll just have to wait and see (I’ve become pretty good at living a “wait and see” kind of life these last two years). Since it’s television, my guess is they’ll milk the cancer plot for all it’s worth then give her a magical reprieve, much like Matthew Crawley, who miraculously recovered from his paralyzing war wound. Or she’ll become the newest member of the BC club and will die — or become completely debilitated by her “life-saving” surgery.

Whatever the case, I suppose the good news is that medicine has moved on — a bit, anyway — when it comes to treatment for this crappy disease. Nearly a hundred years later, we have chemotherapy and targeted radiation and tamoxifen and mastectomies that don’t leave us hollowed out and housebound. Nearly a hundred years later, a breast cancer diagnosis doesn’t necessarily equate to a death sentence.

Although, as Dr. Attai put it, “having breast cancer today is still pretty barbaric.” 

Word.

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Looking for a ‘shortcut’ to bigger better boobs? Breast cancer ain’t it

9 Jul

Elisabeth Dale of TheBreastLife.com asked me to do a guest post on her blog the other day, which worked out quite well because I was in the middle of a hissy fit about something I find particularly irksome: people who think breast cancer is some kind of golden opportunity to get “bigger, better boobs.”

Here’s the start to my post and a link to the website where you can read the whole shebang:

I was talking to a breast cancer buddy the other day — one of the lucky ones who found her cancer at Stage 0 and got away with a minor lumpectomy — and was amazed and horrified at something she told me.

Apparently, while she was still learning about the staging of her disease, a handful of her friends told her they thought breast cancer was a great opportunity to improve her boobs (my friend’s always been small-breasted). As in, “You should totally do a double mastectomy and then get the boobs of your dreams.”

As someone who’s not only had a double mastectomy but is also currently researching reconstruction, I’d like to offer a little insight into this idea that breast cancer is a convenient way to “upgrade” your girls.

To read more, click here.

I got the “Now you can get bigger, better boobs!” chestnut from a few people after I was diagnosed. And have heard other BC survivors talking about people who’ve thrown that at them, as well. What about you? Have people told you how “lucky” you are to be losing your old/small/droopy breasts to cancer because now you can get bright, shiny new ones? Let me know. Maybe we can start a mob. ; )

Jodi Jaecks: breast stroke of genius

23 Jun

Jodi Jaecks, superstar survivor. Photo by Kelly O./ The Stranger

It’s been a big week for me with regard to breast cancer news. Not my own personal breast cancer news — nothing much has changed there — but stories I’ve reported on. First, my editors at msnbc/TODAY.com asked me to write about Jodi Jaecks, the Seattle breast cancer survivor who went up against the Seattle Parks and Recreation Department over her right to swim in their pools — sans bathing suit top.

Jodi, who I met up at Cancertown a few months back, had a double mastectomy in March of last year, followed by additional lymph node surgery and a few rounds of chemo. Like many of us, she’s now trying to reclaim her life — and her athleticism — while dealing with the nasty side effects of her treatment: namely lymphedema and chest wall neuropathy. 

Thanks to the lymphedema, a lot of activities are off the list. But swimming, a suggestion that came up during a post BC treatment support group we both attended, seemed like something that might be both active — and therapeutic. I’m not a swimmer (hate getting wet) but the thought of water splashing against my aching chest sounds incredibly soothing.

Jodi, who doesn’t wear prostheses and isn’t going in for reconstruction, checked out Medgar Evans Pool in Seattle’s Central District then — out of courtesy — told the pool people she would be swimming there without a top. When you don’t have boobs or nipples and you don’t feel the need to fake it, why bother, right?

Well, the Parks people decided they needed to think about that. Which they did for a couple of months, leaving Jodi twisting in the wind. Finally, a few weeks ago, they told her swimming topless (despite the fact she has no “top”) was unacceptable and that she had to wear “gender-appropriate swimwear.” I suggested she show up in some early 1900s Victorian swimsuit– complete with parasol — but she wisely decided to go to the Seattle alternative newspaper, The Stranger, instead. They broke the story this last Wednesday. By Thursday, her story had gone viral — hitting both local and national audiences (including my readers at msnbc/TODAY.com). By Thursday, the Seattle Parks and Recreation Department had also decided to change their tune. Now, not only Jodi can swim there topless, but other breast cancer survivors will most likely be able to do the same in days to come.

I know I’m supposed to be the ever-objective journalist but I’m also somebody who has to look at a surgery-ravaged body every day and tell myself that I’m okay, that I have nothing to be ashamed of, that I’m still beautiful and normal and acceptable. It’s not easy to do this, especially in a society where breast worship is practically an organized religion. Policies that make cancer survivors — or anyone who’s a little different — feel ashamed of their bodies and their determination to heal need to be identified and overhauled. And if necessary, just plain jettisoned. Jodi’s willingness to come forward and tell her story helped do just that.

“It started as a personal fitness issue but once they said no to me, it became a far greater overarching political issue,” she told me when I interviewed her. “Ultimately, I just want to remove the stigma that women with breast cancer have to endure.”

Cheers to that, my friend. Cheers to that. It’s hard enough facing the mirror — and the fear — without some bureaucracy making you feel like a freak. Breast cancer awareness isn’t about pink power tools and fun runs, people. It’s about knowing what a double mastectomy looks like. It’s about learning about the side effects of what is still an incredibly barbaric surgery. It’s about letting survivors do whatever they need to do to heal. Not off in some dark corner full of well-worn ribbons. But out in the light — where it counts.

One more note: I think it’s appropriate to send a shout-out to Christopher Williams, the superintendent of the Seattle Parks and Recreation Department (and a cancer survivor) who only found out about Jodi’s treatment this week but quickly took steps to right an egregious wrong.

Have you been discriminated against because of your breast cancer — or any cancer? If so, I’d love to hear about it.

Also, stay tuned for part two of my exciting breast cancer news-filled week, where I talk about my story regarding the new fat grafting method of breast reconstruction.

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.