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Friday, October 31, 2014

An ugly truth



And here's the final one. "At least we caught it early."

Finding cancer early is not really cause for celebration -- something has already gone massively wrong, when, for instance as in my case, two married people in their 20's both get cancer a few years apart. We were both stage 1, so let's go to fucking Disney World? No. Something has failed. Environmental protection, genetics...and yes, our healthcare system, for not putting enough importance on finding the causes of these diseases.

It's not cause for celebration because you're not out of the woods yet. Depending on your cancer, you may not ever be out of the woods. And that's terrible, especially when you never should have been in those particular woods to begin with.

We aren't "winning the war on cancer" when we're diagnosing more people earlier. We aren't winning when people still die. We aren't winning when people still get sick.

My friend, Sherri, who passed away just over a month ago, was diagnosed early. Stage 1, like me. Early detection is not a cure.

Thursday, October 30, 2014

Positrons


"My most recent one is 'you are a failure on your fight against breast cancer without a positive and upbeat attitude.' You need to grieve, cry, and take to your bed a lot during treatment and for many times after. Your mind cannot will cancer away."
- Jo, breast cancerada

Oh yes. Oh yes. The old positivity trap.  There's so much subtle, and not so subtle, patient blaming in there. The idea that negative emotions build up in your body and make you sick -- somehow that notion survives still. Yeesh.

I think part of the problem is that a lot of people confuse "staying positive" with "getting the fuck on with it." Before I had any personal experience with cancer, I didn't think it was something I'd ever be able to handle, that I'd just cry and wail for months on end, or something. Shockingly, that's actually impossible. The cancer stuff becomes normal really quickly, and you cope with it with the tools you have. If you like to cope with a smile on your face, then do that. You might prefer crying into your dog's fur. Or you might like to listen to Rammstein and smash things. That's equally valid. For many of us, it's all of those things (though you may choose Megadeath).

I'm certainly not saying be negative. That sounds exhausting. But it's not fair for cancer patients to be harangued anytime we express fear or anger or sadness. This shit is hard! And it's not our job to make non-cancers feel okay about it.

Beyond just not telling people that they have to be positive, I think it's important not to tell people how to feel, period. So let's all agree to stop, mmmkay?

Wednesday, October 29, 2014

Puking pink

Pink dish gloves, pink full-of-BPA water bottles, pink fracking drills... You know how I feel about pink as a concept, I'm sure, but let's talk merch. Cause somebody's making a buck off this shit, and spoiler alert, it ain't us.

"I hate all the damn cancer trinkets people think they need to send you... and always pink! What the hell makes these people think I want to be reminded on a daily basis that I had cancer? I don't need a pink cow bell with a ribbon on it or a plaque with a cancer poem or key chains or pins or pens... If you really want to get me something, send cash cause the medical bills SUCK!"

- Amy, breast cancerada

I received my share of pink stuff after diagnosis, though I was spared some of the worst of it. There's something weird and creepy about being initiated into this pink club, where no matter what you're actually interested in/how old you are, you're getting a pink beanie baby after your mastectomy, damn it."Here, you've got this disease, you must love to wear earmuffs proclaiming it!"
 
And the unfortunate truth is that a lot of the pink merch doesn't actually amount to much of a donation towards research, if there is any real donation at all.





People want to help. It comes from a good place. But like Amy said in her quote, try to do something useful. The five bucks you spend on a beanie baby could be better used on, I don't know, a yummy fresh juice, or a movie on iTunes, or coinsurance for an onco visit. Some people like the pink, and that's fine. But don't assume that we all do. 

I know a person, a man, who once for Christmas when he was a kid got a G.I. Joe from a relative. But he didn't want G.I. Joe, all he really wanted was Care Bears. But he was told all boys like G.I. Joe, and he cried because he didn't like violence and wished people would stop forcing him into a gender stereotype.

It's kind of like that.

And if you really want to help someone with breast cancer, just show up with some dish gloves and clean their bathroom. Just make the gloves green, will ya?


Tuesday, October 28, 2014

More realness



This week we're talking myths and misconceptions floating out there in the pink ether.


"When I was trying to decide between a lumpectomy and a double mastectomy, people were "rooting" for the mastectomy so I could get "a free boob job." I went with the lumpectomy - they thought I was nuts. Some people also thought I was lucky to get to do chemo because "you'll get so skinny." Yeah, right."

- Staci, breast cancerada

WOMEN, amiright? SO LUCKY to be able to find comfort in the prospect of our bodies conforming to a crazily restrictive standard of beauty while being faced with life-and-death decisions. It really takes the edge off the breast amputation quandary. 

Sugar coating gut-wrenching health decisions might seem chummy and cool, it's kind of not. If the patient is making jokes, that's one thing. But unsolicited comments like the "free boob job" one negate the gravity of the situation. A person facing a mastectomy is about to have a part of her body amputated. For many, it's the most difficult medical decision they have ever made in their lives. Don't trivialize it, don't try to make it cute. It ain't. Don't make me show you my scars.

Also, guys. GUYS. (And girls.) Can we agree on some things about the female body? It's not okay to spontaneously comment about changes happening to a body other than your own. Ever. Even if you think it's a compliment.

And while we're on the subject, catcalling. Enough already.*



*I felt the urge to write, "Oy, with the poodles already." Welcome to my brain.


Monday, October 27, 2014

Let's be real

It's the final week of October. We've nearly made it through the pink storm.
But beyond just making it through the craziness, I wanted to add a little sanity. A little reality.

I asked my beautiful friends to share some of the myths and misconceptions that have rankled them in the two plus years we've been in this cancer thing together. I'll be posting them here this week (with some of my own mixed in. I need some outlet for all my rage.)

So without further ado:



"Of course we are all brave because we have to be. There isn't a choice. I'm pretty sure if anything about me changed it's my perspective and the fact that I've suffered PTSD but I'm still just basically me. Sometimes brave, sometimes scared shitless, sometimes wise, sometimes silly. Just me." 

- Neta, breast cancerada*

I started off with this one because Neta makes such an important point about the expectations that are thrust upon people who are treated for cancer. We are generally expected to be better, not sweating the small stuff, nicer, more "present". The reality is much for complicated. For me, I'm the same person I always was, except some moments when I'm not (and it's usually for the worse).

Check back each day this week for more!



*Cancerado/a is a word I just made up, based loosely on the origin of desperado, as an outlaw who doesn't stop to pay a toll on a road. This term is for anyone who's walked the cancer road, whether they paid their tolls or not. So yeah. I'm listening to the Eagles now, obviously.

Sunday, October 26, 2014

An exercise in distance

She runs down Eighth Avenue, dodging pedestrians and cars and baby carriages and bikes. She runs at top speed, left arm folded up, holding her necklace and protecting her chest. For a moment she feels part of some madcap scheme. But then, a memory.

"I haven't told anyone because I don't want them to think I'm crazy."

"That's a difficult way to feel."

And the day before,

"Half this city's on something, so get over it."

For as casual as she is about benzodiazepines, they are a one off. A cocktail you can have anytime of day. The milligram of Ativan is even a little sweet when it dissolves on her tongue.

But what she clutches, folded discreetly in a plain envelope, is something else all together now. A commitment.

"Six months," her therapist said. Not forever.

An antidepressant. She is disappointed in herself, though she knows this is ridiculous. She is scared, which is less so.

"Think of it as a reset." Plug in the wires that got unplugged. Send current through all the junctions again.

She makes it past the Google offices, the shuttered sandwich shop, the new and hideous gelateria. Back into the office, out of breath and sweating a little. Gone and back in twelve minutes. Heart beating fast, but not tachycardic like yesterday in the exam room. 

"We'll give you an X-ray if you want one. She got one of her ribs, where they (or some surrounding muscles) ache.

On the phone later that day, at 4:36, relief comes not when the X-ray is clear, but when she is told she can get this script. They close at 5, and thirty college students just arrived to tour her office. Hence the running.

The next morning she opens the bottle, reads the paperwork. It threatens in side effects much of what she hopes to quell. But she swallows the capsule, the little beads inside rattle all the way down.

Friday, October 24, 2014

For Spring 2015

Tunic by Acne Studios, bag by Moschino.


An X-ray for peace of mind, as my beautiful doctor is unconcerned about my bones. But my frantic little brain is another story...

Wednesday, October 22, 2014

The cheese stands alone



Crying in the cheese aisle, and it's been a while.

There are days, many many days, where I see my future life unfold before me in a glorious long, deep, bright haze. Unknowable, except for its existence. Its probable existence.

And there are days, like today, when that lovely haze murks up, promises nothing. Nothing beyond putting my hands out in front of me and feeling, feeling, without knowing how far I can go. 

So, deep in the murk, I abandon the thought of groceries. I leave the market through the sparkling produce section, and into the rain. I check my phone. I'd sent an SOS ten minutes prior, but it's rush hour and everyone is likely on the subway. I should go home, I should go home. Cry in the shower. I get on the train.

All this brought on by a little pain in my back. It feels muscular, probably a strain from my recent stint at the gym, or tendonitis from a too large! too heavy! pocketbook. (Pockabook, is how I say it.)

All this brought on by the last two years. There is nothing that is "oh, it's nothing," anymore. It all can be a hideous something. Something that kills.

Maybe you think me melodramatic, but this is my head in this moment. It. Never. Goes. Away. Waiting for the other shoe to drop. Especially when other things are good. Hubristically good. Happy, not fighting, new opportunities. Not feeling sick. Looking nice. It lurks there, in those places.

Four bars for a moment underground, and the texts come through, and I'm crying again. Where are you? Let's meet. Call me. I cry because I love these girls. So, so much. 

I tell them I'm okay, nearly home now, seeing the doctor by chance anyway tomorrow. I know it's probably nothing, but these tears don't come a place of knowing, a place of facts. They come from a place that's dark and hazy, recalled as if in a dream, except that it was/is my life.

I remind myself that this is, historically, a hard time for me. Multiple freakouts in two previous Octobers. I should have expected this. 

I say this so you know that it always lurks. Those lucky enough to be classified as no evidence of disease (and it is LUCK, not gumption or positivity or strength or bravery, but fucking luck, some of the time anyway) spend lots of time in the nice haze. But the haze is still the haze, changeable and obscure. Terrifying or comforting. 

Most people are afraid to die, but don't think about it much. I'm afraid to die, and sometimes I think about it much. I'm not alone in this. So please be gentle and kind, and try to understand.

I'm okay now, I really am. I'm with my dog and I'll take a bath, and wash it out of my hair, like my grandma used to say. There will be benzos, and fancy beef jerky, and bergamot oil in the steaming water.

Monday, October 13, 2014

Today is Metastatic Breast Cancer Awareness Day

For all the pink triumphal arches, for all the celebration of survivors, there's one group of breast cancer patients that the average person does not see splashed across the pages of a magazine: people with metastatic, or stage 4, breast cancer.

Metastatic cancer is when breast cancer cells take up residence elsewhere in the body, like the bones, lungs, or brain, and grow there. The five year survival rate for metastatic breast cancer (MBC) is about 20%.

20 - 30% of patients diagnosed with early stage breast cancer will go on to develop stage 4 disease, and each year about 40,000 people die from breast cancer in the United States.

My friend Sherri was one of those 40,000.

I met Sherri online, on breastcancer.org. We both started chemo in September of 2012, after having both been diagnosed over the summer with stage 1 cancer. We both had bilateral mastectomies, and we both held a giant party right before surgery. Mine was called A Farewell to Boobs, hers was Say Ta Ta to the Ta-tas. We were both on the young side. We were both scared.

Revisiting her blog today I was struck by her joy, her will, her generosity. Her gratitude, even in the face of so much loss. She invited friends and wore a tiara to her last infusion of taxol in 2013, and her party got so raucous they got kicked out of the chemo suite!

She took her medicine, she bucked up. She said fuck cancer. She did it all. And still. And still. She found that the cancer had metastasized in September 2013. More chemo, then radiation. Then, last month, she died.

She did it all. She held up her end of the "early detection, stay positive" bargain. And still.

Fifteen years ago, my beautiful, incredibly kind and creative aunt was diagnosed with breast cancer, and seven years ago, she died. She was brave, she was powerful. She took her medicine. And still. And still.

40,000 Americans die of this disease each year. That's more than the number of Americans who died in the Korean War, every year.  That's more people than fit into Fenway Park, every year.

And still, metastatic breast cancer receives less than 5% of the research funding devoted to breast cancer.

 Learn more, and please donate to fund metastatic research, at METavivor.org.

Wednesday, October 1, 2014

Post Op

Home from surgery now, and feeling uncomfortable, but okay. Spent yesterday chasing Vicodin with Kit Kats. So you know, not a bad way to spend a Tuesday.

For my first fat graft in July, my friend and amazing photographer Felicity Palma (felicitypalmaphotography.com) came by to shoot some images of the process. Felicity has undergone treatment for breast cancer too, and is working on a project documenting other young women. I am including a couple after the jump (fair warning: there's a bit of blood.)