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Cancer and the coronavirus: hard prep

3 May
COVID19 image double whammied blog

Ghecemy Lopez of Los Angeles, a two-time cancer survivor who now has immune issues. She dons plenty of PPE for her doctor’s visits. 

It’s pretty much been corona, corona, corona these last few months — even in Cancerland — and I don’t imagine that will change much moving forward.

States are starting to open up — Washington will get there eventually —and I pray everyone out there stays safe as we slowly creep forward with our masks and mad soap & water skillz and (hopefully) enough sense to stand far enough away from people that we don’t accidentally breathe in any virus particles they may be talking, sneezing, laughing, singing, coughing or farting our way.

Sadly, it looks like we’re going to be here a while. Yet another new normal.

Like everybody else, I’m hoping science can find or fast-track better treatments than remdesivir (the Tamiflu of COVID-19, just emergency approved by the FDA) and that other drug combo the orange guy in the White House keeps chatting up, along with sunlight and bleach, as a fabulous miracle cure.
FaceSlap
Like everybody else, I’m praying a vaccine isn’t too far off in the distance. First time I typed that, I wrote vacuum, by the way, which may tell you where my head is.

I used to blame that sort of thing on chemo brain; now I think it’s more quarantine brain. It’s Tuesday, right? June 32?

As soon as we started hunkering down in early March and I saw how freaked out people were about the epidemic — all the uncertainty, the life or death odds, the extra precautions we all had to take to stay safe, the lack of a cure — it struck me as weirdly familiar. So I wrote about it for Fred Hutch News Service.

 

For those who’ve been diagnosed with cancer, the onset of the coronavirus pandemic has felt a little, well, familiar. The frantic Googling and data-gathering. The denial and disbelief. The uncertainty and panicky behavior. Cancer patients have been there.

Same goes for all the handwashing and hypervigilance. People who’ve been through surgery or radiation or chemotherapy or bone marrow transplants or other immunocompromising treatments are routinely forced to hunker down at home, avoiding crowds and friends with colds, skipping weddings and air travel and ordering their groceries online.

As one Seattle survivor put it, “I’ve sheltered in place lots of times.”

Did your cancer diagnosis and treatment ‘prep’ you for the COVID-19 pandemic? Certainly feels that way to me, same for the enforced quarantine after my ankle break last August.

Will the losses we’ve endured as cancer patients — family, friends, fellow advocates gone to another invisible enemy — help us bear the inevitable COVID-19 deaths ahead? It’s tough stuff, but as with cancer, we all have to somehow keep powering through.

But right now, it’s all feeling pretty old.

I’m getting corona-cranky after two months of hiding out at home. I’m angry about the people who’ve died and who keep dying because of our country’s clown car response to a deadly pandemic. I’m getting homesick (ironically) for restaurants and yoga studios and my old boring cubicle at work.

So I’m going back to peruse a few of these lessons from cancer patients in the time of coronavirus. Feel free to join me. Or send along your own. I’m having way too many arguments with my cat (and the little snot keeps winning).

#StayHomeStayAlive
#JustKeepSwimming
#FUcancer #FUcovid19

I’m having a moment

21 Apr

TalkIBC momentDiscovered a new Twitter tool that I’m geeking out about a little. It’s called ‘Moments’ and it lets you string a bunch of tweets together — yours and others’ — to create a short story.  It’s a bit like Storify, which recently lost its battle with cancer … er … capitalism. RIP, brave fighter! ; )

Anyway, I’ve put a couple of cancer advocacy Moments together and am going to attempt to share them here. The first is from Lung Force Day at the University of Washington back in March, a very informative sweep of the latest in lung cancer screening stats; smoking cessation apps; electronic vaping and Diane Maping (sorry, couldn’t resist). ; )

It was also a lovely opportunity to see the UW’s glorious cherry blossoms and hobnob with the area’s lung cancer oncs, surgeons, radiologists, researchers and (maybe) one patient advocate? Let’s fix that.

cherry blossoms

Big shout out to Fred Hutch’s Jonathan Bricker and SCCA’s Donna Manders, who are both doing amazing work to help cancer patients get through treatment; kick their smoking habit and sidestep the creepy lung cancer shame and blame game. Remember, if you have lungs, you can get lung cancer. And even if people smoke, they don’t “deserve” to get fricking cancer. Nicotine is super addictive.

Ditto for a lot of the other things we do that give us this craptastic cluster of diseases: drinking too much alcohol; suntanning; sitting on the couch watching TV and eating crap food all the time instead of exercising.

Just sayin’.

lung force day snipHere’s my Lung Force Moment. Please excuse the typos, blurry slides and lack of chronology. You can reorder your tweets but I’m too damn lazy — the sun’s shining and it’s time for Miss Public Health Sciences to go practice what she preaches. ; )

Hope the information is helpful!

My second Twitter Moment is from the Inflammatory Breast Cancer talk that Houston area patient advocate Terry Arnold — aka @TalkIBC — gave in Seattle at the swanky, restyled Cancer Pathways (formerly Gilda’s Club) on Capitol Hill. Terry is an IBC patient who went through seven kinds of hell trying to get a doctor to correctly diagnose her big red swollen feverish boob back in 2007.

Seriously, health care? What a shitshow.

Terry shared her diagnosis story and her path to advocacy (so far, her nonprofit IBCNetwork Foundation has raised $1M for IBC research) and some incredibly infuriating (and darkly hilarious) stories and slides of stupid things her five doctors told her before MD Anderson took one look at her and figured it out (FYI, they actually have an IBC clinic). None of the other docs would believe it was cancer. One guy told her her boobs were aging at a different rate, FFS.

After giving a Patient Perspective talk to 30 or so young docs at Seattle Cancer Care Alliance, Terry brought it (and how!) to the breast cancer patient community, along with Drs. Julie Gralow (onc), Sara Javid (surgeon) and Diana Lam (rad onc).

The breakdown: IBC comes on fast and aggressive; presents as a red, swollen, feverish breast, sometimes with orange peel skin; is often misdiagnosed / mistaken for mastitis and thus diagnosed later; and it’s more prevalent in young women and African-Americans. It’s a tricky one, a rare one (but data is incomplete so it may be more prevalent than we think) and it’s absolutely treatable. One day, hopefully very soon, it will be beatable.

Here’s my TalkIBC Moment along with heartfelt thanks to all the patients and docs and researchers working to take this mofo down. Please share with your networks so more women — and more importantly more doctors! — learn about this creepy breast cancer subtype.

As always, thanks for the read. Cheers and enjoy the day.

Terry and her crazy diagnoses

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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.

Boxing, blogging and trying to ignore the breast cancer beast

30 Oct

Photo courtesy of Jim Seida / NBCNews.com

Yes, I know it’s been a while since I posted anything. I’ve had a busy summer — hiking, baking, boxing and most of all doing this thing I like to call “pretending I never had cancer.”

But summer’s over and fall is here and with it, October, the month when it’s pretty much impossible to forget your breast cancer because everywhere you look people are dressed like gigantic pink ribbons and/or talking about their battle with the beast. And I suppose I’m no different.

I wrote a series of essays last October about my BC diagnosis, my double mastectomy and what it was like to go “out there” and date while going through breast cancer treatment, to try to find love in the time of chemotherapy.

My latest essay, published today on nbcnews.com/TODAY.com, takes up where those other essays left off, delving into some of the ripples you experience after diagnosis and treatment, as you try to navigate that weird territory known as survivorship.  Here’s a snippet:

There’s nothing like having cancer to make you appreciate the little things in life — like buying shampoo, running a few miles or being able to forget the address of the hospital where you were treated.

After I was diagnosed with breast cancer in February 2011, I felt like I lived at that hospital. Today — a year out from treatment — it’s in the rear view mirror, along with the double mastectomy and debilitating chemo and radiation I wrote about last October on TODAY.com.

Not that there aren’t still plenty of daily reminders regarding my year of living cancerously: chemo brain, adhesion pain, hot flashes (courtesy of my new BFF tamoxifen) and, oh yes, my board-flat Olive Oyl chest.

But there have been good, uh, developments, too.

The biggest one — for me — is that I now have hair. For those of you who think baseball is slow and tedious, all I can say is try watching hair grow sometime.

I disguised my bald head with a wig from mid-June until New Year’s Eve then gratefully ditched it, along with the tape, the itchiness, and the constant fear that I’d accidentally spin the thing around backwards while swing dancing like some character on Gilligan’s Island.

Come January, I let my freak flag fly and began rocking a dark gray micro pixie.

“With the wig, I was trying to pass as a healthy, normal woman,” I joked to my friends about my super short ‘do. “Now, I’m trying to pass as French.”

You can read the full essay — and check out more pics of me boxing! — here.  As always, thanks for stopping by. And please feel free to share your story — or favorite survival tip. We’re in this together, people.

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.

In search of holiday redemption

24 Dec

So a funny thing happened a week ago Friday while I was out Christmas shopping. I ran into the ex who dumped me after my breast cancer diagnosis.

While this was the first time I’d seen in him in about nine months, it wasn’t the first time we’d talked. Ironically, he’d called out of the blue the night before my Cancer Kiss-Off: Getting Dumped After Diagnosis story ran on Today.com. Talk about timing.

Not surprisingly, that initial phone conversation was pretty awkward, but at the heart of it was an apology, which was incredibly therapeutic for me to hear. After all, the guy had disappeared on the eve of my double mastectomy, with nary a phone call or text to see if I’d come out of the thing alive. I don’t remember a lot from that call except that he did say that he was sorry for abandoning me and that he was concerned that his disappearance might have adversely affected my healing.  I remember thanking him for being man enough to tell me that and informed him that I was healing just fine, thanks to my strength and fitness level and all the love and support I’d received from family and friends. I remember, also, that I didn’t cry or scream or whine or call him names, although I did mention that a friend of mine had just the day before referred to his behavior as cold. And perhaps heartless.

Then all of a sudden, that cold, heartless guy was looking up at me as I was coming down an escalator at Pacific Place, a swanky shopping center in downtown Seattle. I got off the escalator and the two of us walked a little ways, stopping in front of the windows of Barney’s. He said I looked good (I figured he imagined I’d still be wearing a hospital gown and pushing an IV pole); I said he did, too. We then indulged in some polite holiday chitchat about who we were shopping for and so on and so forth, until it was time for one of us to address the 5,000 pound elephant lying on the shiny tile floor between us. I told him I still had lots of questions about what had happened and that I often wondered if he’d been in a car accident or arrested or perhaps been stricken with amnesia. What else could prevent a so-called friend — and lover — from picking up the phone to make sure I’d survived surgery? He apologized again and talked about his tendency to “unplug” when things got out of control. He then provided some additional information about troubles he’d had on his end — with work, with family, with money, etc. — qualifying it again and again by saying it was nothing compared to what I’d been through.

We talked for about 15 or 20 minutes and then it was time to go. He told me, for about the fifth time, that he was amazed I was even speaking to him. “It’s been a tough year,” I told him. “And life is short. I don’t want to carry around a bunch of anger and bitterness.” Besides, I said, gesturing towards the holiday shoppers, the decorations, the tree, the tinny carols, “It’s Christmas.”

I walked away feeling pretty strong about the whole thing until I got back to my neighborhood. That’s when I ducked into my local watering hole and downed a martini in about fifteen seconds flat, then text messaged about 17 girlfriends to let them know what had happened. Not surprisingly, I was suddenly very shaky. It wasn’t that this guy was the love of my life and seeing him again had completely done a number on my heart (it had been bruised, to be sure, but not completely battered). It was more that seeing him was like riding a bullet train back to those early days of diagnosis: the punch to the stomach when I learned about the four tumors that lay hidden in my breasts, the gut-wrenching news that I was going to lose my girls. Followed by my hair. And if luck decided to take another bad turn, my life.

Incredibly, he called the following Monday night and we talked again. Along with some mundane updates on where we were with our lives, there were more explanations and more apologies. I explained to him a bit of what I’d been through  — “Yes, my hair looks different because I’m wearing a wig” — without going into too much detail (I was the first person he’d ever known with cancer and I wanted to try to educate him about the disease a little). He talked about how upsetting it was for him to be completely unable to fix things when they go wrong and that he sometimes just had to walk away when things were too broken. Like me, I guess. He alluded to the fact that the cancer was scary to him (yeah, I know what you mean, buddy). Then he told me that he was going to have to live with the guilt over the way he had treated me for the rest of his life.

“Well, I guess my job is done then,” I told him, laughing. It’s hard for me to remain serious about anything for too long — bad relationships, breast cancer, the abuse I suffered as a child. Joking about these things is the only way I can maintain power and control over them.

Then out of the blue, I asked if he would like to work off some of that guilt. “I need somebody to take my air conditioner out of my window,” I told him. “You did it for me last year. Maybe you wouldn’t mind coming over and doing it again?” He was there the next night and had the air conditioner in its box and in the closet before he’d even taken of his coat. He also had a Christmas present for me, a completely unexpected act of kindness (or guilt-induced kindness) that I still find sort of puzzling.

To be honest, the whole thing is sort of puzzling. I know that his disappearance was devastating to me at the time, even though deep down I knew our fledgling relationship was probably doomed from the start, with or without the complication of cancer. But that devastation wasn’t just due to his disappearance. It was also about the diagnosis, the surgery, the loss of my breasts, my health, my wholeness. Nine months later, it’s almost impossible to separate the strings.

The ex and the cancer are so inextricably linked, in fact, that it’s almost as if my breast cancer has suddenly shown up on my doorstep to apologize for fucking me up. Which, I have to say, is not an unwelcome turn of events. Part of me realizes that this is ridiculous, of course; that my ex is a man and nothing more. A scared, guilt-ridden, flawed man who fucked up royally but has enough self-awareness and strength to own up to it. And since it’s Christmas and since I’m a forgiving person, what choice do I have but to proffer some much-needed holiday redemption?

The real question, of course, is will I ever have the strength to forgive myself — my body — for getting sick in the first place? Will I ever be able to show it the same courtesy, the same affection, the same level of love and absolution?

That’s something I’m still working on. And if ever there’s a time for it, I’d say it’s now.

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!

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