#TALKPINK

shame2

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Komen SHAME!

SHAMEThere’s no getting around the horse’s ass: Kohl’s and Susan G. Komen made a reprehensible move.  It’s the same old cause marketing shill that makes money for Kohl’s, employs another celebrity hack, and fills the coffers of Susan G. Komen for the Cure.  And this time they did something really original: they plagiarized the intellectual property of METAvivor to make more money for their staff, counsel, and marketing executives. “Everyone knows about breast cancer,” Katie Holmes is quoted as saying on the ad.  “But it’s what we do about breast cancer that can make the difference.”

Funny, that is exactly what METAvivor does successfully every day: raises awareness about funding discrepancies that shortchange metastatic research in the cancer world and directly funds research of metastatic breast cancer.  Yet on the entire #talkpink site not one word is mentioned about metastatic breast cancer.  It is unquestionably repugnant.

“Together we can start the conversation,” my ass.  While we chat and make two multi-million dollar companies more money, more men and women have died from this disease. Komen isn’t serious about metastatic research.  Stop talking.  Fund real research or join the all-volunteer force today.  No one is making money from breast cancer here.  No celebrities are being paid.  Instead, they’re making a real difference.

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One More Thing!

Okay, just one more commentary on this ad campaign and I will move on.

When I found out that I had breast cancer, the world-class surgeon to whom I was referred downplayed its seriousness.  When I look back, it has to be one of the single oddest moment of the surreal life I began to lead in July 2012.  He told me that if I were to have cancer, then breast cancer was the one to have.

I didn’t know any better at the time.  I repeated it to my family and friends.  I’ll be okay.  This is the easy cancer.  Repeating it even made me feel better.  And then quite suddenly it wasn’t easy anymore.

I was diagnosed with metastatic breast cancer about three weeks into my initial diagnosis of invasive ductal carcinoma.  As I broadened my knowledge base and connected with organizations and individuals, I learned that breast cancer was never the easy cancer.  I could have any combination of surgery and medication and still face metastatic breast cancer at some point in the future.  Or not.  What an awful thing this really was.  My surgeon was talking out of his ass.  He had assumed a paternal role and was just patronizing me.  One of the reasons I walked away from that practice.

Truth is, metastatic cancer is just as hard as any other kind of breast cancer, it’s just that its stakes are higher.  Medications work and I don’t know for how long.  Then one of them stops working and I go on another.  It’s working, but making living impossible.  So I try another and hope that it works.  I go from scan to scan hoping the latest ache doesn’t show up as a hot spot.  And now I always walk with a cane.  There isn’t a choice.  Sometimes I think I don’t need it and, for awhile, I don’t.  And then things get so that I do. And sometimes I pretend I don’t really need the narcotics I take on schedule, but I always do.  I’ve stopped trying on both accounts.

And one thing we all face–regardless of the cancer any one of us might have–are the goodbyes.  All of the goodbyes.  The friends that we make and grow to love suddenly become quiet.  Blogs aren’t updated.  Twitter feeds go silent.  Good wishes litter static Facebook pages like a carpet of leaves.

CaptureLike many of you, I was Twitter buddies with Jada.  When I saw that she was entering hospice we sent private messages back and forth.  Nothing more could be done and she told me that she had made peace with that.  She always asked me how I was doing, wished that I was pain free, and wanted me to have a good life.  I would tell her that she was loved and how much I appreciated her.  I had a rough couple of days and hadn’t checked Twitter, but as soon as I was able I sent her a message on January 29.  I told her she was loved and that the weather in NYC was colder than it had been for years.  And then I read on AnneMarie’s blog that she was gone.  I had missed her last tweet on January 27: “Y se me va la vida….and my life goes away….“.   She died on January 28.  Thirty four years old.

It was on the heels of this young woman’s senseless death from metastatic breast cancer that Pancreatic Cancer Action UK launched its advertising campaign.  “Hard hitting” they called it, as if to lend credibility to the central message that having breast or testicular cancer was somehow “better” than pancreatic cancer.  The organization’s founder staunchly defends the campaign because when she was diagnosed she wished she could have had breast cancer.  The good cancer.  The one with all of the wonderful outcomes. The one with all of the money.  The one that the public loves and will walk miles for.  The one that is pink. The one that is pretty.

The one that kills.  Every 74 seconds someone in the world dies from metastatic breast cancer.  In starker terms? One thousand one hundred sixty seven individuals every day die of breast cancer.

1,167.  Dead.  Every.  Day.

Five days after PC Action’s “hard hitting” campaign shit across the television sets and public spaces of the UK and the internet, we know no more today than we did before about pancreatic cancer.   And the entire episode has left me feeling hollow inside.  All I know is that it was a lousy move; what a short-sighted and self-indulgent campaign this was.  It has added nothing to the basic knowledge set about pancreatic cancer’s signs and symptoms, just a pool of very unfortunate individuals wishing they had good cancers.

I can’t make sense of any of it.  Our friends die every day and we have to put up with this?

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Pancreatic Cancer Action Campaign: I Wish I Had Breast Cancer

ihatebreastcancer

Congratulations, Pancreatic Cancer Action.

Your brilliant marketing plan is working. It was a stroke of genius to have Tube ads and YouTube videos of people saying “I wish I had testicular cancer” and “I wish I had breast cancer.”

The UK-based  Pancreatic Cancer Action’s Ali Stunt  was diagnosed with pancreatic cancer age 41 in 2007.  Upon learning the disease has a 3% chance of survival and an average life expectancy of just months, she found herself  wishing she had  a cancer with a  better chance of survival. “In fact the cancer I personally wished I had was breast,” Stunt writes. “[My friend with breast cancer] was telling me how grueling her treatment was and how difficult it was to cope with the diagnosis. While I was sympathetic…I couldn’t help but think every now and then, ‘it’s alright for you, you have an 85% chance that you will…

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You Want It? You Got It.

Dear Ladies Who Want My Breast Cancer,

I know that my blog posts and Twitter activity have been minimal since august of 2013. It was a miserable year filled with tests, pain, and uncertainty. I think I have been distant because, in large measure, I just want to forget it. I wish I could forget it. In fact, I wish I had one of those easy breast cancers. You know, the ones where you get a lumpectomy and some radiation and you’re cured? I wish I had one of them.

I’m sorry; I don’t mean to be flippant. It’s just that all of a sudden people are wishing they had breast cancer and I wanted to get a sense of what cancer envy is like.  But I can’t wrap my brain around that.  I think if you’re stupid enough to wish you have breast cancer then, damn, it’s yours!  And, in truth, I’m happy to hand it over.

Let me walk you through it all so you’ll know what’s coming. First you’ll get the tumor flare that kicks off a whole host of severe back pain. And, the docs will tell you that its receded, but guess what? The fucker comes back!  Then there’s three months of agony, a month of weird anxiety, and then it finally dies. And then there’s a necrotic hole there or something?  It was always a bit vague, but while that hole is healing up nicely with the aid of the monthly Xgeva shots you’ll need to get, then there are months of uncertainty where your boss is champing at the bit to find a way to get rid of you since you can’t quite make a full week for months.  You struggle with bouts of sheer exhaustion, joint pain, and fear.  Christ, sometimes you’ll wonder why you even bothered.

And I have it pretty damned easy as opposed to many of my sisters, so that a short term plus at least.  Now along with that you’re going to have to consider the other bone metastasis. Oh, didn’t I tell you?  I have metastatic breast cancer.  I’m sorry if you didn’t know that, but a deal’s a deal. Looks like you’re going to die anyway.

Life is brutal like that.  If you had any real sense you’d have done some serious research before jumping on the “Gimme Breast Cancer” wagon. There are a lot of different breast cancers: pre-cancers, full-blown staged cancers, positives, negatives, and ones that are inflamed, and then there are those that become metastatic breast cancer.

This is the one that will kill you. It depends though, you can have one that will kill you in short order, one that hangs around and then gets you, or you can win that very, very lucky lottery that only a tiny sliver of people have had–where a spot is radiated or cut out and you go on to live a healthy life. But don’t worry about that one. If you’re dumb enough to want breast cancer then karma is smart enough to make sure you bypass that tiny sliver so you can get to enjoy what most women do: medications, surgeries, financial hardship, loss of job, independence, and death.

The grass is always greener on the other side. Particularly when you are possessed with cancer envy and don’t bother to ask the right questions.

Love,
Me

PS
Capture

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Let’s Talk About Sex

We all talk a lot about what cancer has done to our lives in one shape or another.  The pain, loss of employment, our body image, insurance, bankruptcy, self-esteem, and a hundred and one other negative impacts.  Some folks even think cancer was a blessing–but not many.  (And certainly not me.)

Yet when it comes to intimacy we suddenly become very quiet.  I won’t say that it is nonexistent, but most of us don’t talk much about what–if any–effect breast cancer has had on our sex lives.  And that’s just heterosexually.  I have found next to nothing that explores the experiences of gay men and lesbian women with breast cancer, let alone problems of intimacy after the fact.

So who is doing it?  Anyone?  As a matter of fact, someone is and I want to get the word out about this important work.

AnneMarie Ciccarella, who went through her own breast cancer experience and became a serious activist on behalf of women, is  setting her sights on breast cancer and intimacy.  Share Those Moments is the conduit through which AnneMarie is seeking your stories about your experiences with breast cancer and other gynecological cancers and intimacy.

Partnering with a respected gynecological oncologist, their shared intent is to compile as much information as possible in an effort to explore the topic in depth and find patterns and shared experiences.  Or, as AnneMarie notes, “find out what is really happening behind closed doors (and in our minds too).”  Both hope to compile this work in a book on the subject that will serve as a resource for those who have gone through these disease experiences and their partners.

If you would, please take a few moments to explore the project and add your voice to those already participating.  It will help the project.  It will help you.  It will help us.

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The Road to Ruin

I have been blessed with relatively good health all of my life.   I did go some years without health insurance as a professional student, but I came through that okay.  The closest I came to chronic disease was reading about it.  I read about people losing their homes and jobs as a result of the disease.  It was horrible and I always voted for and supported any and all attempts for single-payer health care in the United States.

When I was told that I had metastatic breast cancer, the only things I thought about were keeping and losing my life, the next doctor’s appointment, when the next prescription needed to be filled, and–when it got bad–when the pain would go away.  All through the year I shelled out my co-pays, money for the bus or taxis, and kept telling myself that it would be okay.

CaptureSo now, after a year of shelling out thousands of dollars in co-pays and transportation (and holding a blue ribbon insurance policy for which I also pay dearly) I find myself on the precipice of financial ruin.  My liquid savings has been depleted, I’ve fallen behind, and the promise of a “long and happy life” rings hollow.

It is easy to cut the things that can suck your money away: cable, eating out, concerts, and  events.  But they are also the very things that bring me joy at a time when I crave and need them the most.  I can move to a cheaper apartment, but that will mean longer travel at a time when I can’t travel far (for work or for healthcare).  And, yes, New York City is an expensive place to live regardless.  But these choices are not the things that cut me off at the knees–it is the cost of health care.

I put away money in my FSA–as much as it will allow.  But it will not be enough.  And to sweeten the pot my oncologist has referred me to a nephrologist because of some lab values that worsen with each month.  Great.  One more doctor, one more co-pay, more transportation costs, and probably more prescriptions.  More time away from the office.  I never once thought of my health.  Indeed, I tried to get out of going entirely.  I fought with my oncologist, I accused her of seeing dust where there was none, I had physician fatigue and was sick and tired of doctors, but I had to cave.  She saw dust, nasty dust.  So I have to go.

And I am tired.  So tired and exhausted.  Every few days I take to my bed with the vapors and sleep and sleep and sleep.  Hours of sleep.  I despise being useless, yet I have no energy to do anything.

And all the while I keep accumulating more miles on the road to financial ruin.  Unfortunately I am not the only human being on this road.  It’s an endless road of financial refugees pushing forward as best they can while the enemy bites close to their heels.

How do we handle this, folks?  What do you do to help ameliorate the crushing effect of financial hardship at the same time you’re trying to stay alive?  Is it donations?  Organizational assistance?  And how many hoops must you jump through to satisfy the needs of an organizational paper trail while you are too fatigued to care?

No, doctors tell you a lot of things.  But they don’t tell you everything.

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The Whole Chronic Thing

When I was first diagnosed with metastatic breast cancer, I wanted a second opinion.  It wasn’t that I thought another physician would tell me that I was fine, I just wanted to hear another take on the whole thing.

So it was that I met George Raptis.  He was wonderful.  He bolstered the findings of my first medical oncologist and praised her to some extent, for given my presentation of symptoms and history he would not have chosen to perform the PET/CT scan that revealed my metastatic disease.  And that is when I first remember hearing the description of stage iv cancer as a chronic disease.  He told me the mean survival rates (2.5 to 3 years) and then went on to say that many women live with metastatic disease well in excess of five years.  And, to that end, my cancer would be treated like a chronic disease.

When Dr. Raptis left for greener pastures and I met my new oncologist, she also used the description of chronic disease quite a lot.  So, too, did the dozens of women who attended the Living Beyond Breast Cancer conference for women with metastatic disease.  The words just floated in my mind and never really settled anywhere.  It was just a phrase.  Just a beige description that made no impact.  Until just a few weeks ago.

My favorite knitting nurse (you know who you are!) was preparing my monthly shot of Xgeva and my quarterly Lupron shot (the arrows in her quiver are painless).  I have no memory of the specifics of our conversation, but I recall that as I bared my left cheek for the Lupron jab she said “after all, you have a chronic disease.”  And the phrase finally settled.

It didn’t just settle.   It grew barbs and dug in.

Chronic disease.

I mulled it over and over, the phrase tumbled in the cement mixer.  The whole walk to the bus and the ride home was dominated by the thought.  I don’t have a yeast infection, I thought.  I have cancer!  I didn’t like the phrase and started to take umbrage that people say it so casually.  I had said it that way, after all.  It’s how I described it to my family: no, I will never be free of cancer; I have a chronic disease.  The thing is, telling my family that I have a chronic disease made me socially acceptable.  It didn’t sound so bad after all.

Further, chronic disease makes this all so unbelievably doable on an emotional level.  “I have a chronic disease.”  It sounds so much better than “I walk around with a palpable cancerous tumor in my right breast.”  I quite literally feel an honest-to-goodness difference when I verbally say “I have cancer” as opposed to “I have a chronic disease.”  Indeed, I need to consciously force myself to say them identically, otherwise the final syllable in disease takes a little upturn in tone.

I know that if you take the time to look up the meaning of chronic it becomes clear that how ever I may feel about the word, its use is completely valid.

chronicFurther, consider the company we keep under the rubric chronic disease: Parkinson’s, ulcerative colitis, diabetes, epilepsy, and HIV–to mention but a handful of individual Hells.  It’s just that in my mind, the phrase chronic disease describes the endless character of any disease in a way that makes it more socially and emotionally acceptable than these diseases are on their faces.  It’s complicated because folks with chronic disease are often seen as the cause of their own circumstance and are often under diagnosed and under treated.   In a very real sense I want to own the word cancer.  (See Laurie Edwards’ book In the Kingdom of the Sick for a lengthy and informative discussion of chronic illness in an age where we are accustomed to being cured of disease.  I reviewed the book in an earlier post.)

I do my routine: Letrozole in the evening, Lupron quarterly, and  Xgeva monthly.  PET/CTs quarterly–though this will soon move to bone scans and non-PET CTs.  I drag my sorry ass to the medical oncologist every month.  I’m sure as hell not doing this because of my chronic asthma.  No, this is different. I have to make sure this thing stays in check and doesn’t start spreading to more bone or other organs.  And, for me, that needs to be called cancer at all times.  I am managing my disease, i.e., cancer.

I made it one year with MBC, but I see so many women with stage iv disease in worse shape than me.  It brings on a guilt that seems ludicrous, but exists notwithstanding all the reasons why it shouldn’t. I mean, if you have completely run out of options it’s not chronic anymore, is it?  It’s the end.  It rips my heart out.  We just lost Cindy Rose Phillips and Donna Peach, and Lisa Lynch among others.  And so many more of our friends are fighting for their very lives right now.

No, suddenly I don’t like the words at all.  Chronic disease somehow masks what is really going on.  For good or ill, I have breast cancer.  Stage IV breast cancer.  And, you know, that’s okay.  I just want to call it what it is in its starkest terms.  I want to take ownership of that word: cancer.  Chronic disease is just too good for it, considering the real hell that it is for so many men and women.  Considering the real hell that it has been for me.

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After the Crisis, Ambiguity

Since August I have been struggling to write. Writer’s block would be the easy explanation. But as reality has it, there is so much more going on.

For the first year of my diagnosis I scorched Earth with my posts. I dipped into a fiery pot of fear, anger, disgust, and bewilderment and scrawled my words on to a virtual page. Writing was my way of exploring this profound change to my life. I explored my fears of dying, the surreal reality of living with cancer, and reached out for support across the world. And for a self-described lazy writer, I was more prolific than any period in my life. And then it suddenly stopped.

It happened as the tide began to go out and the pink October tsunami could be seen building in the distance. Unlike last October, this time I allowed the tsunami to wash over me and, at the same time, I successfully ignored it. I boycotted October and wrote nary a word. I could have cared less about ta-tas, tits, boobs, saving second base (gross), pink ribbons and, yes, The Pink Diva herself, Nancy Brinker. And it was surprisingly liberating! It was the best feeling in the world! As much as I hated the pink, I found that I could live with it after all. Acceptance. Finally.

The crisis was over. The back pain that compromised my optimism and self-worth, my career goals, my finances, and everything else was ultimately resolved. My disease was stable and I could once again return to the work that I love so much. I had moved from the reactive phase of my disease to one of maintenance. And I have been out of sorts ever since.

Clearly the inspiration to scorch the Earth had begun to wane. One theory put forth is that with my energies now pouring into creative ideas and goals at the office, I am otherwise tapped out. The second theory posits that with acceptance reached I need to find inspiration from another source. The third theory is that with acceptance I’ve also tapped into denial. You know, everything is fine so there is no need to write and work it out anymore. And the fourth theory is that I’m just damned tired of it all.

In reality, all of these theories are in play. Even though I walk around every day with a palpable tumor in my right breast and an active–albeit stable–lesion in my sacrum, I do try very hard not to think about it all. But it is not easy. For one, I am always becoming acquainted to yet another limitation. It took a day and a half to recover from a Pearl Jam concert. I did a big load of laundry one Saturday and then ran a quick errand to the market for some fruits and veggies. It took me Sunday to recover. I took a 2.5 hour bus ride, and the next day was spent with pain killers and sleep. Any day of activity needs to be balanced by the following day without activity.

I work a full day, albeit a later one: 10-6 now. I can no longer wake, shower, and run into my day. Now I have to ease into it. My knees hurt so badly thanks to Letrozole. And, sure, I could try something new but it’s working so well on shutting down those estrogen receptors that I am fearful of trying something that could upset the wagon. So I grit my teeth and deal as best I can. My days of teaching have reached an end for if I do push through a day of 10-10, I will pay for it the following day when I am obligated to fulfill my primary professional obligations. *sigh*

CaptureI fight my oncologist all of the time. I put off blood draws, argue over scans. In point of fact, I’ve just rescheduled a renal ultrasound that was to take place in two hours for next week. It all takes so much time, money, and energy. (Denial. Can you see that one?) The only doc I will not argue with is my pain specialist. I still deal with pain at some level every single day and have no desire to revisit that hell again. (Ah, see how I can accept one thing and not another?)

I’m sick of taking an entire roster of medications. Christ, I’ve got a cool pill organizer, but the fact that I even have one deflates me. They all work; I am grateful for them. But who wants to swallow all of that chemistry every day? Never mind the costs. Probably a good $3K a year for co-pays on doctors visits and medication. For someone who would heretofore pay $150 annually for scripts, this is a mind numbing jump. My finances have taken a hard hit–something many of you can relate to, I know.

It is difficult when you have to weigh your life against economic realities. Do I take a gamble and pull back on my retirement (which I said I was going to do in an older post)? And will I live long enough to retire in the first place? I’ll be a lot older in twelve years and the pain that I face down now may not be so easy to scare off then. Everyone wonders and worries about retirement–but retirement with metastatic disease? That is about as close to an oxymoron as you can get.

When you’ve gone into the acceptance and maintenance phase of this experience it’s not like we get to carry a “survivor” flag or get excited about the close of surgery with new nips. I am not making light of those things, but when it comes to metastatic disease there is no flag, there is no close. It is always present and it doesn’t always tell you the way it’s going to go. It continues to badger my finances and throw a cloud over my retirement dreams.

Sure, everyone’s future is largely ambiguous, but add metastatic disease to that? The only thing we are guaranteed is financial hardship and a black cloud that hangs low over our “golden years.”

Oh, and cancer. Yeah, we’re guaranteed cancer.

The worst part about this is that I know I am not alone. Too many of us have to accept that we have a heightened sense of ambiguity in our lives that may not make us shut down, but does make it hard to think of the future the way we used to. How do we deal with a life of painful ambiguity? How do we face the unbelievable financial toll that it all exerts? I sure am looking for some answers, so if you have any start filling up the comments section!

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Boycott

Capture

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