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Reconstruction is not a boob job and other scary stories

31 Oct

October has been a bit of a crazy month for me. I had my second reconstruction surgery at the end of September – followed by a couple of post-op complications – so for weeks, I’ve just been trying to bootstrap my way off the couch and back to normal life. But since it’s Breast Cancer Awareness Month – aka Pinktober – I’ve also been busily cranking out essays and stories about the crab monster and the various ways it messes with our lives.  

Two of those essays went live today.  The first, for TODAY.com, is about how Reconstruction After Breast Cancer Isn’t a Boob Job. Anybody who’s been down the long road to recon knows this (and how), but there are still many people who think reconstruction is something that’s done as simple day surgery in a plastic surgeon’s office. Breast cancer? No problem! Here are your new magical boobs!

For all of those people who think building new breasts is as easy as baking a cake and all my BC sisters who’ve been through hell and back just to regain what cancer stole from them, a few thoughts on the subject:

It’s been nearly a month since my last surgery and the new girls are still a little scary looking. Righty’s recovering from a post-op infection that had me in the hospital on IV antibiotics for two days. Lefty’s missing most of her nipple, a casualty of my first surgery back in May.

They’re bruised and bandaged and look a bit like they’ve been in a bar fight. But they’re mine, thanks to the wonders of breast reconstruction surgery. Or as it’s popularly known, my “free breast cancer boob job.”

I’m being sarcastic, of course. Only a fool would confuse breast reconstruction with a boob job, but sadly, there seem to be a lot of fools out there.

I should know; I used to be one of them, until a radiologist uttered those three little words that have made such a difference to so many peoples’ lives: You have cancer.

After that, everything changed, including my understanding of what women have to go through to get their girls back. And trust me, it’s not easy and it’s not quick.

Unless you’re lucky. Or Angelina Jolie.

And here’s a link to the full essay.

The second piece, written for the Fred Hutchinson Cancer Research Center’s website, doesn’t specifically focus on breast cancer. In fact, many of these tips could apply to anyone diagnosed with a debilitating disease. It’s on 8 Things You Shouldn’t – And Should – Say To a Cancer Patient.

As always, I’d love to hear about your experiences, either with reconstruction or cancer comments that have left you speechless. Sorry for the short post but as I said, this month is crazy.  And it’s not over yet – today’s Halloween! Take care and thanks for the read, my friends.

You are entering a reconstruction zone

6 Jun
Photo by Erin Lodi, Columns Magazine

Photo by Erin Lodi, Columns Magazine

It’s been a tough couple of weeks here at Recon Central. As I mentioned in my last post, I’m currently going through breast reconstruction, and contrary to the Hollywood version (i.e., a woman decides to get new breasts following her mastectomy and a half hour later is sporting a pair of perfect, perky boobs), my experience has been less than immediate. Or ideal.

Without getting too technical — or too graphic — let’s just say the body’s healing process can be excruciatingly slow, scary and gross. Especially when you’re dealing with radiated skin which is touchier than a hornet on steroids. I’m currently a month out from surgery and Lefty (my radiated breast) still looks like something you might see on The Walking Dead. But while it’s not pretty (or healthy — yet), the takeaway is that I actually have two small breasts where I only had well-developed pecs before. 

And that’s huge (the news, not the boobs).

For those who may not know, I’m doing a different kind of reon than most women (Angelina included). Instead of doing a flap procedure (i.e., where a plastic surgeon cuts a slab of tissue, muscle and blood vessels from one part of my body and sews it to my chest to make a boob) or going the tissue expander/implant route (radiation put me out of the running for that), I decided to use an external tissue expander known as the Brava coupled with fat transfer surgery.

Basically, the plastic surgeon “liposucks” fat from where you have it (goodbye saddlebags!) and injects it where you don’t (hello boobs!).

But before any of that happens, you have to prep the area with this crazy suction cup device known as the Brava. I started using the Brava – or the Barbarella, if you prefer – in early April and wore it for 10-12 hours a day for a month before going in for my first fat transfer procedure.  Wearing the Brava – or as I put it, serving time in “boob jail” — is a trip. The domes are huge and unwieldy and are about as subtle as having two roasting pans attached to your chest.

By wearing them, though, I was able to stretch the skin and promote the growth of blood vessels, both of which helped create a welcoming environment for the tiny droplets of fat my plastic surgeon injected during that first fat transfer procedure (I’ll need at least one more to get my “B-girls” back, by the way).

Not surprisingly, this cutting edge procedure piqued the interest of my editor at the University of Washington alumni magazine, Columns, who asked me to write a personal essay about my recon experience. As usual, I decided that sharing is caring (seriously, I hope this will help people understand what breast cancer and reconstruction can be like for women) and took him up on his kind offer. Here’s the top to the essay and a link to the whole piece.

As always, thanks for the read.  Also, BC buddies, if you’re willing to share your reconstruction stories, I’d love to hear them.

Reconstructing hope

It’s 10 o’clock on a Sunday night and I’m sitting on my couch watching Mad Men, a glass of red wine at my elbow. In many ways, it’s a typically tranquil spring evening — a cat on my lap, the lull of the television in the background — except for one small detail.

I’m in boob jail.

That’s the term I use to describe the two gigantic domes I’ve got strapped onto my unnaturally flat chest. Prescribed to me by my physicians at the UW Medicine Plastic and Reconstructive Surgery Clinic, where I am a patient, the Brava device, as it is officially called, involves two domes made of hard plastic with a thick gelatinous rim that sticks to your skin like bare thighs on a hot vinyl car seat.

There’s also tubing and a little motor and a blood pressure-type hand pump — all of which help you achieve the proper amount of suction. For the past three and a half weeks, I’ve spent 10-12 hours a day with this bizarre contraption suctioned onto my chest. And I have many more hours and days and weeks of boob jail ahead. Why? Because as annoying and cumbersome and claustrophobic as the device is, it — and my UW Medicine health-care team—are helping me do something rather spectacular.

They’re helping me grow new girls.

To read the full essay, click here.

Climbing back into the mouth of the beast

24 May

attack of the crab monstersFor those of you who haven’t noticed (as far as I can tell, there are about three who have),  I am the world’s worst blogger.  Or maybe I should say, the world’s most sporadic blogger.

When I was going through treatment, I blogged about the breast cancer beast a lot. Probably because treatment is pretty frigging surreal and you have to write about it and talk to other people who’ve gone through it, otherwise, you start to feel like maybe you’ve gone slightly insane. Nurses purposefully injecting you with poison? Technicians tying you up and easing you into a machine, then fleeing the room while they blast you with radiation? WTF? Who would do such a thing?

But that’s cancer and what the docs like to call cancer “treatment.” You come out of that crap and your hair starts to grow back and your strength returns and you just want to keep walking — or in my case, running — as fast and far away from Cancerworld as humanly possible. You want to forget it all and just live your life, worrying about the trivial crap you used to worry about BC (before cancer). I can’t meet any decent single men. Hrmph. I’ve got fun plans this weekend and now it’s going to rain. Waaaaaah!

You don’t want to think back to how hideous it was dealing with those drains after the double mastectomy or how your bones felt like they were being ground into powder by a giant during chemo or how horrifically ugly and dehumanized you felt every time you looked in the mirror when the doctors were finally through with you. Bald, board flat, chest burned to a crisp, I looked like a stand-in for Gollum from Lord of the Rings. Not something you want to keep on speed dial when it comes to calling up memories. I wanted to forget.  And part of forgetting for me, has been ignoring the fact that I’m supposed to be writing a breast cancer blog.

If you’ve been there, I’m sure you get it.

Also, if you’ve been there, I’m sure you understand how difficult it is to suck it up and climb back into the mouth of the beast yet again.

Don’t get me wrong – I’m not experiencing a recurrence or anything like that (knock wood). Instead, I’m currently going through the joys of breast reconstruction which for me has been every bit as difficult and painful and worrisome as the original surgery and treatment. And I’m just getting started.

I’ve had one surgery so far and am still very much in recovery from that. At this point, things are a little iffy and I’m hoping to write more about my recon and what’s happening with that in days to come. And that just might happen since my doctor has advised me to forget exercise and activities and basically just lie around my apartment like a three-toed sloth doing this incredibly boring thing called healing.

What the hell, might as well fire up the blog again, right?

For the moment, I can tell you that I went with a new type of recon known as Brava / fat transfer. Here’s a link to a story I wrote about it for TODAY.com last year. This type of recon is supposed to be less invasive than traditional recon, particularly those flaps, where the plastic surgeon cuts a slab of tissue, muscle and blood vessels from your stomach or your back or your inner thigh, sews it to your chest and magically turns it into a boob. 

I knew reconstruction was serious business going in, which is why I put it off for a year and a half after treatment. I wanted to make sure my body – and particularly my left radiated breast – had healed. I boxed three times a week to stay fit – and to keep those pectoral muscles full of healthy blood flow. I ran to keep my weight down (more accurately, to keep those tamoxifen pounds from glomming on) and to keep my heart rate good and strong.

I exercised to keep the beast from catching up with me again. And to get into shape for recon surgery. But it still kicked my ass.

I had my first fat transfer procedure two weeks and two days ago (May 8) and if this is the less invasive kind of reconstruction, I don’t even want to think about what my BC sisters who’ve had flaps and tissue expanders and implants have gone through. Seriously, the next time some moron refers to breast reconstruction as a “boob job,” I’m just going to coldcock ‘em – literally, metaphorically, whatever. As soon as I get my left hook and my right cross back, that is.

Anyway, I know this post is somewhat scattered. A little weak in some places, a little angry in others. A bit purple here and quite dark there. In fact, worrisomely dark there. But it’s also a pretty accurate reflection of what’s going on with my body right now. At present, I’m on antibiotics and don’t appear to have an infection. Yet. But things are starting to go sideways which, as anyone who’s dealt with cancer can tell you, is par for the course.

I’m trying to hang in there; I’m trying to be patient. And though it’s difficult, I’m trying to remember back to what I went through two years ago – the surgery that took my girls, the chemo that took my hair and my strength, the radiation that turned me into a crispy critter – taking comfort in the fact that I made it through all of that. I’m pretty sure I’ve got the strength – or maybe just the sheer orneriness – to get through this, too.

Hope you’re all doing well. Thanks, as always, for the read. And for those who might be interested in what I’ve been working on lately, here are a couple of links to recent stories I did for nbcnews/TODAY.com on breast cancer-related topics.

Mom’s virtual cancer family helps daughter cope with loss
Like an idiot, I wrote this story one day after surgery. I do not recommend this.

Breast cancer bras a no-go for Victoria’s Secret
The latest on the push (no pun intended) for a Victoria’s Secret “survivor bra.”

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.

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.

Flying the friendly skies

7 Apr

The first annual Cancer Treatment Centers of America blogger summit. That's me on the left, looking like I have to go to the bathroom. ; )

I’m back in Seattle after a week-long working vacation that took me first to Phoenix, Arizona, for a blogger summit sponsored by Cancer Treatment Centers of America, and then on to Dallas for a sister summit, sponsored by my big sister Mary.

As you know, I was a little nervous about whether I’d make it through the TSA security checks with my dignity — and my girls — intact, but I managed to breeze through without a hitch (except for the lost bag in Phoenix and the cancelled flight in Dallas). I was especially happy that I didn’t have to go through the new, high-powered X-ray machines, not because I don’t enjoy mouth-breathing strangers looking at my naked body in the most unflattering light known to God or man, but because I’ve had quite enough radiation for one year (or one lifetime), thank you very much.

Unfortunately, not all of my breast cancer sisters have been so lucky with the wand-wielding folks of TSA.

Nancy’s Point sent me a link to a blog post she wrote about the trials and tribs she endured during her vacation in February, which included being threatened with a pat down after explaining to a TSA agent that she might not be able to lift her arms over her head while going through the X-ray machine (anyone who’s had a mastectomy can understand this) and a slight freak-out on the part of a security agent regarding her “scary” lymphedema sleeve (all the terrorists are wearing them this season, apparently).

Also got a note from Amy who pointed out that more fun may await, should I choose to go the tissue expander route when I get my reconstruction. “Those suckers have a magnetic valve for when you get your ‘fills,’” she wrote, “and actually set off the alarm at the metal detector! THAT is a fun one to explain!”

Rocking my chemo curls (and a pretty vintage scarf) in Dallas.

I didn’t set off any alarms with my boobs, but I did experience some alarms (and alarm) in Dallas when a slew of tornadoes (15, to be exact) set down in and around the city just as I was getting ready to leave for the airport on Tuesday. Luckily, no one was killed and none of the twisters came within 10 miles of my sister’s house. But my flight (and hundreds of others) were cancelled, thanks to winds that tossed 18-wheelers around like Tonka toys and hit DFW with hail the size of peas then ping pong balls then baseballs then grapefruit then, I don’t know, the planet Pluto, all within a half hour.

Finally made it out of Dallas late Thursday night with a slew of notes, information, and interviews from the blogger summit. And a rash of mosquito bites from my sister’s back yard, which didn’t bother me all that much since it meant the chemo had finally left my system. (Last August, during my “I’m So Chemover This” party, the mosquitoes that plagued everyone else left me completely alone, thanks to my toxic avenger status).

I’ll be writing more about the blogger summit in days to come, but for now, I’ll share a quick video that one of my new cancer buddies, Catherine of MassKickers.org, shot while I was there. Why do tumors suck? she asked. Oh, let me count the ways!

Flight of the phoenix

29 Mar

It’s been a while since I’ve posted anything here. Which is good in some ways because it means I’ve been busy and not just moping around having cancer. Not that I’ve done a whole lot of moping, but there’s been some quality “under the coffee table time,” which I think is allowed (even in my family).

Primarily I’ve been working, writing stories about everything from the Hunger Games Workout to getting naked at the gym to Ashley Judd’s weirdly puffy face. I’ve also been running and socializing and swing dancing and doing a bit of dating here and there. In other words, wending my way back to my pre-cancerous life.

Or at least giving it my best shot.

But there are always reminders — and I’m not just talking about the new “pixie cut” or my flat-ironed chest. I’m flying to Arizona today which used to mean stressing out about packing and getting to the airport on time and worrying whether I’d be seated next to someone I’d accidentally made out with in college. Now that I have my breast cancer merit badge, though, I have new things to worry about.

TSA, for instance. Are they going to make me slap out my “gummi boobs” in front of dozens of passengers the way they did a breast cancer survivor from Charlotte, N.C., back in November 2010? Are they going to confiscate my prostheses as potential weapons of mass (transit) destruction? (Cue the fembot video).

Curious as to how other breast cancer survivors have fared while flying, I went online and immediately found a discussion board filled with posts from women with the exact same concerns. Some had indeed been subjected to invasive pat-downs and/or queries about what exactly they were packing in their bra (a question I haven’t had since seventh grade). Others talked about leaving “the girls” in their suitcase so they wouldn’t be grilled about the strange blobs on their chest after going through the body scanner. A couple (jokingly) talked about tossing their fake boobs into the gray plastic bins along with their shoes and purse and everything else.

I’m definitely not going to hide my girls away in a suitcase like some kind of illegal contraband. Likewise, I don’t want to have to announce to a complete stranger that my pretty Spanx bra is full of spongy silicone and not much else (although the thought of throwing my gummi boobs onto the conveyor belt with my bags and shoes and coat does have a perverse comedic appeal). On yet another note, I’m not too keen on going through the full body scanner, at least not after receiving 33 daily blasts of radiation this last fall.

Then there’s the whole lymphedema issue. Since I had lymph nodes removed from both sides (9 on the right, 3 on the left), I’m at risk for this crap. And flying, of course, is one of the big ways it can be triggered. Unfortunately, I remembered this about two days before my departure date, which didn’t give me enough time to find what’s known as a “compression garment,” i.e. a super tight sleeve (preferably in black).

So now in addition to worrying about the plane crashing (or the pilot or flight attendant having a meltdown), I have to worry about getting publicly outed by an over-zealous TSA agent and possibly having my arms swell up to twice their size.

On a positive note, though, Seattle is a sad, soggy mess while I’m headed for 85 degree weather. Also, more importantly, I’m still alive to bitch about all this stuff. ; )

Wish me luck, folks, and as always, thanks for the read.  Also, if anyone has any stories to share about flying with fake boobs (or fake anything else), I’d love to hear them!

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.

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.

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.

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