What Are Breasts For?

As October winds down and we prepare for Halloween celebrations tonight, I thought I'd share some final thoughts on the month. And on breasts in particular.

***

The librarian at Quinn's school is a friend. She was his music teacher in preschool, and now I see her when I'm volunteering as garden mom or at PTA meetings. All of which to say that we're Facebook friends, as well as real-life friends, and we often get fired up about similar things. Yesterday a few weeks ago (because I'm spending all my energy right now on growing a human and also a remodel project to add a nursery so these unfinished posts get stuck here for a month), I saw a post on my friend the librarian's Facebook page regarding a book.

The book seems to be about talking to boys about puberty and other coming-of-age concerns. Another mom had seen this, was rightfully pissed, and was asking whether our librarian knew anything about this series or why the editors had been such dolts (I'm paraphrasing).

Here is a screenshot.

First - girls have breasts to make milk for babies? No. Women do. Girls shouldn't be having babies, and we shouldn't perpetuate that notion in a book aimed at BOYS. But that is hardly the only thing that makes this page offensive. The second reason for girls having breasts, according to Alex Frith for this Usbourne series, is "to make the girl look grown-up and attractive," and virtually all breasts can do this. 

Hold on while I pick the keyboard keys off my forehead. 

Am I the only one offended? Is it because my real breasts have been gone for nearly six years now? DO I NO LONGER LOOK GROWN-UP?!

I've been thinking so much about my breasts this month. Not only because it's October and WE ARE ALL AWARE OF BREAST CANCER ALREADY, but also because I'm going to have a baby sometime in the next few weeks. Side note: both Pinktober and this remodel have seemed to drag on FOREVER, which is weird because at the very same time, this pregnancy has zipped by in what seems like an instant. 

When Quinn was born, I breastfed from the start, right up until I had to begin chemo a few days before he was six months old. I loved that bonding time with my baby boy, his little face turned up to mine as he slurped and suckled. I was lucky. Nursing didn't hurt. My nipples weren't cracked or sore. I craved Blue Moon and was thirsty all the time, but nursing was relatively easy for me. It's part of why I knew it was bullshit when my doctor told me the lump in my right breast was mastitis. 

I was in awe of my body and what it was able to accomplish. I GREW a human! And then made food for him for HALF A YEAR! It blows my mind what women can do. 

And again, I'm growing a human! I have the fatigue and tell-tale waddle and peeing my pants every time I sneeze to prove it. 

But my breasts aren't tender as they prepare to feed my baby this time around. I no longer have nipples. Even my doctor occasionally forgets and asks me about breastfeeding, but short of me regrowing a boob like a lizard regrows its tail, nursing from my fake boobs is not going to happen.

I have heard that there is a possibility some milk will still come in in the days after I give birth, and I might have painful lumps in my armpits where a few milk ducts may remain. If that happens, I'm tempted to ask for more surgical drains to be placed -- like I had after my mastectomy -- to collect some of that liquid gold. Brilliant, right? I am also so grateful I was forewarned. That would be one terrifying surprise to wake up to, a whole bunch of painful lumps in my armpits after five years of thinking I was going to die of cancer.

I've had some wonderfully generous women step forward to offer me their extra breast milk, and the hospital has assured me our baby will have breast milk while we're at the hospital. Also, while I know "breast is best" when it comes to feeding newborns, plenty of babies do just fine on formula. Still, it saddens me to my core that I won't be able to feed this baby girl the way I was able to feed Quinn. 

On the other hand: no excuses, Chris. Those middle-of-the-night wake-ups are FAIR GAME for both of us. Mama just might get some sleep this time around. 

***

Beyond my own breasts, October has been full of the usual tired pink crap, though I have a lot of adorable pink stuff coming into my life right now so I can't totally hate on the color itself.

Yesterday, my dad sent me an article about the frivolity of the pink culture that emerges every October, even as it is meant to say to us with or beyond breast cancer that we are celebrated and supported. The whole article is worth reading, but two lines in particular struck me:

"The association of femininity and breast cancer is pernicious, because it genders the disease, meaning that a diagnosis of breast cancer marks patients as women first, people second. It implies that our womanliness is diseased, not our bodies."

Like the article's author, I didn't initially associate my diagnosis and the ensuing surgeries (and chemically-induced menopause, and hair loss, and days on the toilet post-chemo, et cetera, et cetera...) with a loss of my womanhood, though as time went on, there were certainly periods when I felt less than feminine. Instead, like most people facing CANCER, I was worried about my life. Thinking I was metastatic for years didn't help, since stage 4 is the only stage of the disease that kills.

Being surrounded by the color of Barbie dolls and bubble gum doesn't feel helpful. I am so thankful for black, purple, and orange today. And chocolate.

As you all know, I have lost a LOT of dear friends to breast cancer. Chris lost his dad to pancreatic cancer. My dear friend and fierce advocate Beth is nearing the end of her life now, which is devastating our MBC community and ripping a hole in her young family.

This, I think, is the biggest rub when it comes to Pinktober: it's not about our breasts.

They might be fun for a bit or serve a very special purpose for moms who are able to nurse when they're healthy, but when our lives are on the line (and they are -- 113 American women STILL die of breast cancer every damn day), our breasts are the last thing we're worrying about. And they definitely aren't what defines us as women -- healthy or not.

Reclaiming October

In case you missed it, October is right around the corner is here. (One of these days, I may sit down and write a whole post at once, but that day is not today.) It's even feeling like fall (i.e., below 100 degrees) here in Phoenix. Break out the freaking Uggs and pumpkin spice lattes already.

September has been was a whirlwind, though luckily in Arizona, not a hurricane. Please go click that link to help if you can.

Over Labor Day weekend, I went to Spokane to celebrate my grandmother turning 80; I had a birthday, too; I walked more than I probably should have at 7 months pregnant in another Avon 39 walk; my mom and a few dear friends flew in from out of town while some phenomenal women here threw me a baby shower, where I realized just how much PINK is about to come into my life, whether I'm ready for it or not; and I'm still managing a remodel so we have a place to put this little child when she arrives in the world. Since windows and floors are on backorder until mid-October, my god I hope she doesn't come early.

My dad, me, my 80-year-old grandma, and my "little" brother. Life goals now include living until I'm 80, and looking half this good doing it.

Team Booby & the Beast 2017.

We've raised a lot of money.

These women spoiled me rotten and my heart is so full.

My stunning mama & me. We felt all the emotions.

So when I say October kind of snuck up on me, it's because I've been really, really distracted loved and celebrated over here. I've missed you guys, but at the end of the day, I can barely keep my eyes open to catch up on what madness our Tweeter-in-Chief has been up to, let alone put thoughts together here.

But with October I feel an extra responsibility to speak up. My friend Beth is struggling to keep her platelets high enough for whole brain radiation every day so she can have a bit more time with her two kids and her husband, J. Knowing Beth, also so she can yell at Congress advocate to get more research dollars funneled toward metastatic breast cancer so moms (and others) can stop dying of this disease by the thousands. On that note, if you're able, please donate blood -- especially important given the tragedy in Las Vegas today.

I walk the Avon Walk every year, but I struggle with the pink-ness of it all. With the "save the ta-tas" slogans and "free breast exams" signs held by men along the route, to which I want to scream, "Sure, take a look at these scarred and purple, cold and numb ones, you disease-sexualizing ass." And then I wonder whether my own blog (this one right here!) is part of the problem with Booby in its name. Am I also a disease-sexualizing ass?

In the Avon walks I also always see a teenager or two walking for their deceased mom or a man honoring his late wife or a woman in the midst of treatment, bald and reminding me that DAMN, WOMEN ARE STRONG.

At the end of the day, I walk because of Avon's mission to provide for both research and support for underserved communities. Because they lift up those at the margins who would be further marginalized by the bad policies our government seems to threaten on a daily basis. Because women of color -- particularly black women -- fare far worse than white women do when it comes to breast cancer outcomes, and I believe organizations like Avon can make a difference when it comes to these disparities. I was so moved by the speaker they chose at this year's walk, I wept as she spoke about her Stage 4 diagnosis that so closely matched what my story used to be. Her reasons for walking are worth hearing.

And now I also walk because I'm about to have a little girl, and while men can and do get breast cancer, it is primarily a disease affecting women's bodies. IS THIS WHY WE DON'T HAVE A CURE? If testicular cancer killed 40,000 men a year (it kills around 400), would we have this problem solved?

***

Quinn had "pink day" at his school last Friday, presumably to mark the (near) beginning of October. When I asked him if anyone had talked about breast cancer at school, he said, "No." Then added, "Well, let me put it this way. I didn't hear anyone talking about it." Later, I realized it's probably because they don't want to use the word breast at an elementary school.

On the way to school, I had asked Quinn if he ever talks about me having had breast cancer. He does not. "I don't even remember it!" he tells me, as if I'm ridiculous for asking. Oh, the sass of a six-year-old. And so I dropped him off looking like this, then cried a good portion of the car ride home.

I cried because I'm pregnant, partly, but also because something that was such an enormous weight for our family is but a blip in this little guy's mind. Because if all continues to go well (knock on so much fucking wood), his sister won't have experienced my cancer at all. I cried because we are not the norm; most families do not get a reprieve from metastatic breast cancer unless you count death. Because we can do better -- in so many ways -- as a country.

Please think of all that as we go into this "awareness" month. Please donate responsibly. Please learn about the devastation of metastatic breast cancer. Please understand this disease is about so much more than saving some tatas or the color pink, unless you're six and get to dye your hair fuchsia for the first time.

My Tribe Will Understand My Memory Issues

I can’t thank this community enough for your support after my last post. I have cried reading through your comments and emails, Facebook messages and texts. I was scared to share this part of my story. I was worried about what it would mean for my identity (because once you put it on the Internet there’s no going back). I was afraid about what it might mean to break ties with a community that’s become a second home.

I shouldn’t have worried. This is my tribe, and its members are not victims who cry foul when another gets good news. Instead, I mostly heard: this is a miracle, and we love you. One friend said, "We are not kicking you out just because you lucked out!"

I love you all right back.

I still had cancer. I still experienced nearly five years of metastatic cancer. Now I just have different appointments and different doctors to figure out what the best path forward is for me. I’ve got more pain and sometimes even miss the damn steroids. I’ve got similar levels of fatigue (apparently it wasn’t just the chemo). My chemobrain might be slowly retreating, but it’s been replaced by an anxious fear that perhaps none of my doctors know what they’re talking about.

I still feel scatter-brained most days.

And Chris occasionally makes fun of me, but keeping track of it all, then and still: the appointments, kindergarten volunteering, and now, also, a job search, is not something I can seem to manage on my phone. Calendars don’t sync, I fumble with my thumbs when trying to enter new appointments into my device at the end of one doctor’s visit and get frustrated, and inevitably ask for a print out of my follow up visits anyway.

I know. I sound like a dinosaur.

I prefer paper. I prefer a hardcover book, too, although I recognize the convenience of my Kindle for travel. But for my calendar? For keeping track of my life? It’s a spiral-bound monthly planner all the way. My 2016 one has photos of Quinn interspersed throughout, and I'll probably hold onto it forever for that. And because this year has been something else, amiright?

The cover of my 2016 planner. Photo taken by Jodi Lynn Wall, April 2015

A few weeks ago, a woman reached out to me to share her breast cancer story, and to ask if I’d be interested in trying out some of the products she’d designed for the company she works for, Erin Condren. You might have heard of them?

Would I like some paper and pens and organizing pockets and even a journal, too? Yes, please! Sign me up. In ink.

{photo source: www.erincondren.com}

And then I learned that a portion a full FIFTY PERCENT of the proceeds of these products would be donated to the Pink Lotus Foundation, which aims to provide treatments for underserved communities. To help women who don’t have the means or insurance to help themselves when they’re diagnosed with breast cancer. See, corporate America? There IS a way to do Pinktober correctly!

***

Side note: do you know how much DISPARITY exists in breast cancer survival rates? That African American women are more likely to die of the disease, and that women of color are less likely to be given information about reconstruction options? That death rates are falling overall for breast cancer, but not nearly as quickly for women of color?

This is why I’ve walked the Avon Walk these past 5 years, with my team raising more than $100,000 to help underserved communities (and provide money for research). It is a cause near and dear to my heart because I have been fortunate, and I hope I don’t take a dollar of that for granted.

Do you remember my SIX THOUSAND DOLLAR shot? One shot. That I received probably fifteen times for just the cost of my copays.

Cancer is expensive. Treatment is expensive, transportation to/from doctor's offices is costly, and taking time off work to receive and recover from treatment isn't a viable option for many, many women. That's where organizations like the Pink Lotus Foundation and Avon come into play. I will support them as long as I'm able.

***

Last week, I went in to have my thyroid checked, because I’ve gained an unusual amount of weight since stopping treatment. My thyroid appears fine, but my joints all ache. I’ve got an MRI of my knee today, and tomorrow an ultrasound of my right armpit for a painful lymph node (or possibly just the spot where my implant is sewn into scar tissue).

I missed the third presidential debate to be on a flight to Houston to attend a metastatic breast cancer conference as a patient advocate. From what I understand, SNL did a fine job of summarizing the two candidates. I'm going to order my "Nasty Woman" coffee mug as soon as I'm done writing this.

Before my flight to Texas, I helped Quinn's class of 27 kindergarteners plant beet and carrot seeds in their class garden. Friday was a school book fair, this weekend we had two birthday parties, a soccer game, and ASU's homecoming. Tomorrow is our 8th wedding anniversary. I can’t keep track of all that in my head! Pre-chemo, I might have been able to, but now I rely on writing everything down.

And I never do sponsored posts here. I don’t even know if this counts as one. But I did receive some free products, and I am vouching for their awesomeness, so here is my disclaimer. Also, send some love to our tribe member Sam if you get a chance. She’s doing good work, and keeping me a little less scatter-brained in the process.

Hoping for the Two Percent

Ever since my breast cancer diagnosis, October has become a doozy of a month. I don't know if it's this way for everyone who goes through breast cancer, but I suspect it's tough for most of us who've been told our cancer has spread, that it's no longer considered curable.

It is hard to see the sea of pink -- in the seat-back pockets on my flight home from Missouri on Sunday, there was a flyer telling me I could buy a $2 pink lemonade to support breast cancer awareness. I wanted to scream about how aware I actually am. But Quinn was sleeping on my lap and an elderly woman was sitting beside me, on her way to help her daughter who'd just had hip surgery, so I kept my mouth shut. I raged on the inside.

It was even tough to watch Sunday football with my dad, and not just because the Seahawks keep freezing in the 4th quarter and losing games they should be winning. Pink goal posts and cleats and towels aren't contributing much to the cause they claim to support, and -- at best -- we inch toward better treatments, a few more months of survival (when the average after a mets diagnosis is 3 years), and if we're lucky, milder side effects.

All the while, the general population continues to believe that breast cancer is curable, we need to save the tatas, and early detection saves everyone.

I am exhausted, and it's okay if I blame October for that, right?

To me, this is the great injustice of this sea of pink, these calls to support awareness everywhere you look, most of it not doing much more than marketing products wrapped in pink. I used to think that both awareness and research were important. Now I wonder: Who is not aware?

But also, what do most people really know?

Breast Cancer Education Month doesn't really have the same ring to it.

According to the Story Half Told project I took part in, "Fifty percent of people surveyed said that breast cancer progresses because either patients did not take the right treatments or preventative measures." AND ALSO: "More than 60% say they know little to nothing about metastatic breast cancer." (emphasis mine)

*& %!)%#@!

A man I met a few years ago was saddened to tell me that his mom had beat breast cancer but couldn't beat brain cancer. My bet is that she never had brain cancer, but rather breast cancer that metastasized to her brain. She didn't die of brain cancer, she died of breast cancer. But I did not want to argue with a grieving son, so I simply told him I was sorry.

***

I try to be careful about the language I use. I no longer say I have metastatic breast cancer but rather that I was diagnosed with metastatic breast cancer more than four years ago. Do you see the difference? I don't know whether it changes anything and perhaps it's just superstition. I couldn't even bring myself to participate in a die-in (as proud as I am of the waves these women are making) because I don't want to say I'm dying of breast cancer -- even if 98% of people with this diagnosis do die of it. I have to hope I'll be part of the two percent.

Why does language matter so much? Why do we who've been diagnosed with metastatic breast cancer care whether you know what the word metastatic means?

#Repost @bcrfcure with @repostapp. ・・・ A local news producer called me this week to ask about my story. Her first question was "What makes metastatic breast cancer different from other breast cancers?" Metastatic breast cancer originates in the breast and then spreads to other parts of the body, such as bones, liver, lungs, or brain. When I was first diagnosed in 2011, it had already spread to my lungs. xoxo @jencampisano #BeTheEnd #MetastaticBreastCancerAwarenessDay #MetastaticSayIt #BCRFMetavivorTakeover #StoryHalfTold

A photo posted by Jen Campisano (@jencampisano) on Oct 13, 2015 at 7:24pm PDT

Why are we over awareness?

We're really tired of our friends dying, for one. We're scared we will be next, even when we hope we'll live to see the next milestone: our child graduating, or getting married, or learning to tie his shoelaces.

I have nightmares about cancer, in the form of unwanted guests, or sharks trying to come onto shore to attack me, or burglars trying to break into my house, and I wake up sobbing and unable to relax enough to fall back asleep without the help of sleep aids.

We want people to understand how scared AND how hopeful we are, more than they will ever learn by purchasing a can of pink lemonade. We hope that one day these campaigns will go beyond awareness and actually do some educating so women (and men) will know their risk, understand what as many as 250,000 of us are living with every day, and maybe start turning some of the pink consumerism into research dollars that will help us have fewer nightmares and celebrate more milestones.

Instead of buying pink stuff this year, please consider donating to a reputable organization that provides money for research. Here are a few I like, in no particular order.

METAvivor.org -- the only organization solely focused on research into metastatic disease
BCRFcure.org -- funds the largest project focused on metastasis in the world; highest rated breast cancer charity in the U.S. according to Charity Watch
Avon Foundation -- contributes to critical research AND provides support services for under-served patient populations
Young Survival Coalition -- support for women diagnosed under the age of 40

A Story Half Told

So here it is. October is upon us. Tonight, even the lights at the top of the Empire State Building will glow pink.

And Quinn and I are in New York City to experience it. Chris will join us this weekend because he wanted to buy Quinn a hot dog on the Battery Park Staten Island ferry as we make our way to the Statue of Liberty. Still, we're not just here for the cooler temps, the hot dogs, or even the pink lights.

Quinn and I flew out for the launch of a Pfizer-led initiative, A Story Half Told, that aims to change the breast cancer conversation to include stories of those of us living with metastatic breast cancer. The project debuted at Milk Studios last night with a gallery opening of photo essays documenting a day or two in the lives of five of us women, the idea being that photography can make a compelling impact in a way that words often can't or don't express.

Universally, the essays were poignant, raw, and intimately beautiful. You can view them all in their entirety here. In particular, the behind the scenes footage of Holley Kitchen's experience with her photographer, Angelo Merendino, had me completely choked up.

In addition to the photo essay, I was asked to speak at the event.

Here's what I said:

Thank you all so much for being here for the launch of A Story Half Told. My name is Jen Campisano, and this is my son, Quinn — the light of my life.

When Pfizer asked me to be a part of this project a few months ago, I jumped at the opportunity to share my story to a wider audience, to — I hope — give a better idea of what life looks like after a metastatic breast cancer diagnosis. Mostly, it looks like life, with a few more doctor’s appointments.

There are still kids’ birthday parties to attend, laundry to be done, backyard pools to swim in, bedtime stories to be read. There are also port draws, CT scans, chemotherapy appointments, and follow-up visits with my oncologist every few months.

What I want you all to understand from this exhibit is that metastatic breast cancer affects women at all stages of life, from all backgrounds and ethnicities. Cancer does not discriminate.

It is a terrifying, life-altering thing, to be told you have incurable cancer, that you’ll always be in treatment. But I want you to also see how each of us are living in spite of our illnesses.

Most days, we are thriving instead of cowering. We allow ourselves the freedom to rest and recuperate when we need it, but then we get on with the business of life — caring for our children, grandchildren, communities, gardens, and ourselves.

We fall down and then stand up again and again and again, even in the face of grave circumstances. It is what we do.

Quinn doesn’t know any different. I was diagnosed when he was just 5 months old, more than four years ago. I don’t know any different as a mom. We have been together every step of this, he and I.

When I was diagnosed, the statistics said I had a 1 in 5 chance of watching my son start kindergarten. Because of some incredible drugs and my dogged determination (my husband calls it stubbornness) and some very good luck, I have had no evidence of disease for nearly two years now.

I still receive a targeted chemo every three weeks as a sort of insurance policy. I had treatment Monday, then flew out here from Phoenix yesterday when I’d normally be recovering on my couch. I feel a little nauseated, and not just because I’m nervous about speaking in front of all of you.

God willing, I will walk Quinn into his first day of kindergarten next August. With new therapies on the horizon, there’s hope I will dance with him at his wedding, too.

I want that to be the reality for all of us living with metastatic breast cancer. That is my hope for this project: to shed more light and understanding on this disease so more research gets funded so more of us can get back to the business of living.

I am very proud to be a part of this exhibit, which so beautifully portrays the realities of our various lives. With that, here is the incredibly talented photographer who captured my story, Pei Ketron.

***

Maybe we can start to change the conversation about metastatic breast cancer by sharing our stories in new, compelling ways. Please spend some time on the Story Half Told website. Get to know these women, their stories. And then share them, please. The world needs to know, especially as Pinktober descends and pink ribbons fly all around us.

Disclaimer: I worked with Pfizer on a collaboration to raise awareness about metastatic breast cancer. The opinions expressed in this blog post are mine, not Pfizer's.

Around the Web

Suddenly, it's almost the end of October. The pink parade is tapering off, and I hope starting to change directions toward a more educated discussion, toward more action, toward life-saving research. I'm back to digging up the research I can find to share it with you here, back to writing my book (seriously, honestly, I'm almost done), back to brainstorming ideas for getting our voices heard.

On that note, don't forget to vote next week. Have you heard how important it is to speak up for yourself?

Here's what's caught my attention around the web in the last couple of weeks. As always, please feel free to send me anything you think should be featured here.

Oh, Komen. When Will You Learn?

Or, why so many of us are opposed to a $100,000 donation to the largest breast cancer organization on the planet.

{photo credit}

Fast-Tracking FDA Approval for One Drug to Treat Metastatic Breast Cancer

"The CDK 4/6 inhibitor has already won breakthrough drug status at the FDA. The PDUFA date for palbociclib will fall on April 13, 2015, as Pfizer seeks an OK to market it for women with advanced or metastatic ER+, HER2- breast cancer."

Lung Cancer Can Lie Dormant for Two DECADES

Just in time for Halloween, this spooky story might change how we look at cancers long-term (and help explain why it is typically so much better to treat cancers early in their lifespan). 

"By the time patients are sick enough to be diagnosed with cancer, their tumors will have developed down multiple evolutionary pathways, making it extremely hard for any one targeted medicine to have an effect.

The findings show the pressing need to detect lung cancer before it has shape-shifted into multiple malignant clones."

Starving Cancer Cells (But Not in the Way You Might Think)

There is plenty of talk out there about diets and cancer (avoid sugar, eat plant-based diets, drink alkaline water, etc.) All of that is well and good and may ultimately help fuel your body to better stave off cancer to begin with.  But here is some research suggesting that cancer cells that metastasize do consume a special diet, fed by a certain protein. Scientists are looking at ways to starve those cells.

"In other words, some cancer cells are programmed to eat at home, while others have a special diet that allows them to travel to other sites. If there was a therapeutic way to stop the migrating cells from packing a lunch ahead of time, it could potentially halt their journey. Suppressing PGC-1α appears to do just that."

Immunotherapy to Treat Triple-Negative Breast Cancer

Results of a clinical trial to be announced at the annual Breast Cancer Symposium in San Antonio in December. Stay tuned...

I DO F*!king Love Science

This one is courtesy of my friend Ginelle. It's about using sound waves to open the blood-brain barrier to allow chemotherapeutic agents an entry point for a brief period in order to treat cancer that has spread to the brain (typically very difficult to do). Cool, cool stuff.

A Shout-Out to My Alma Mater

"The funds provided by the CDC will be used by the Breast Cancer Program to assemble education materials, enhance delivery of care for patients, develop individualized prescriptions for wellness and implement research discoveries for young women with breast cancer to reduce overall breast cancer death rates."

And Stem Cells to Deliver Cancer-Killing Toxins? Yes, Please.

"The study was published in the journal Stem Cells, and could represent a breakthrough in cancer research, allowing the cancerous cells to be killed and the healthy ones to remain intact, as the toxins in stem cells only target the cancerous cells. Scientists have applied for approval from the FDA to start the clinical trials of the method.

Experts praised the study as “the future” of cancer research.

“This is a clever study, which signals the beginning of the next wave of therapies. It shows you can attack solid tumors by putting minipharmacies inside the patient which deliver the toxic payload direct to the tumor,” Chris Mason, a professor of regenerative medicine at University College London, who was not participating in the study, told the BBC."

Around the Web - Mets Edition

Today, October 13th, was National Metastatic Breast Cancer Awareness Day. Metastatic (or Stage 4) breast cancer is what happens when tumor cells leave the breast and set up shop elsewhere in the body, usually the lungs, liver, brain, bones, or skin. Of course, I'm weird and had spots in my lymph nodes and spleen.

My links today are primarily focused on metastatic breast cancer. Consider this a dose of true October awareness. And if you're feeling so inclined, a great place to donate (even $5) is www.metavivor.org, which allocates 100% of its grants to funding research on metastatic breast cancer.

Want to Learn More about MBC? Here's a Good Starting Point.

"While MBC claims the lives of 40,000 women and men in America every year and 20-30% of those diagnosed with early stage breast cancer will go on to develop recurrent, metastatic disease, awareness remains low and only 7.1% of breast cancer research investments over the last dozen years were focused on MBC." 

Thank You Over and Over Again, Joan Lunden

"As hard as it would be to hear, metastatic cancer is not a death sentence. Survival rates for people with metastatic cancer varies from person to person, but a large study found that 15 percent of women lived at least five years after being diagnosed. Some women may live 10 + years beyond their diagnosis and since these studies were conducted, newer metastatic breast cancer treatments have become available. This leads us to believe that the survival rate for a metastatic patient has improved since these studies last occurred."

Pfizer Has Also Launched an Education Campaign

"FACT: Breast cancer progression can occur regardless of treatment or preventative measures taken – Half of people surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventative measures, signaling the potential stigmatization of people with metastatic disease. In reality, breast cancer can spread quickly and inexplicably, regardless of treatment or preventative measures taken."

Have You Heard? Young People Can Get Breast Cancer, Too. 

Prior to my diagnosis, I didn't realize women my age could even get breast cancer. Sadly, I was sorely mistaken. 

"According to the American Cancer Society, there are an estimated 250,000 breast cancer survivors living in the US who were diagnosed at 40 or younger, with around 13,000 new cases expected annually. While that accounts for less than 6 percent of cases in a given year, studies show that young women are more likely to have aggressive forms of the disease."

People Weigh in On What Breast Cancer Awareness Month Means to Them

Brought to you by the good people at Fred Hutchinson Cancer Research Center in Seattle. 

Finding Clues in Genes of 'Exceptional Responders'

The profile of one woman who beat the cancer odds -- "And The New England Journal of Medicine published her story on Wednesday as a case history in the new genetic era. It concludes with a lesson that may help doctors treat thousands of patients with more common cancers, like breast and bladder cancer, and even find an alternative when a drug stops working."

Increasing Survival Time for Her-2-Negative Metastatic Breast Cancer

"As reported in The Lancet Oncology by Gligorov et al, maintenance capecitabine/bevacizumab improved progression-free survival and overall survival vs bevacizumab alone in the trial."

A New Kind of Awareness

{photo credit}

I'm all for wearing pink if it brings some research dollars in or encourages a young woman who didn't think breast cancer could happen to her to push her doctors for more answers. But yes, yes, yes on the gimmicky and commercial.

"For those of us who advocate for the “cause” – as I see it: the need for more breast cancer research and better care for all affected – a calendar-based theme feels gimmicky and commercial, even manipulative. At best, it’s useful for fundraising. In some parts of the world, including a few U.S. communities where believe-it-or-not stigma about having cancer persists, NBCAM may lead a few women who are hesitant to seek care for breast tumors to go and get it."

Around the Web

In the chaos of the last week, I realized I've fallen behind on posting my finds from around the Internet (which I referred to as the "web" in a conversation with my college-age nephew this weekend, and he looked at me like I was eighty). Here are the things that have grabbed my attention over the last couple of weeks. There has been a lot, given that it's Breast Cancer Awareness Month, so I've tried to whittle it down.

Would YOUR Bank Account be Okay if You Were Diagnosed with Cancer?

I am so incredibly fortunate that we have excellent health insurance. The year I had my bilateral mastectomy, insurance covered more than $250,000 worth of bills for us. My targeted chemo costs more than $10,000 per month. Not to mention, most people (me included) struggle to maintain a job while going through treatment, so then how do they maintain health insurance coverage if they're not married? The Affordable Care Act was a solid first step, but more could be done to ensure access to care without fearing that you'll have to file bankruptcy.

The Results are In: Perjeta Extends Lives

"Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group.

That is the longest amount of time for a drug used as an initial treatment for metastatic breast cancer, the researchers said, and it may be one of the longest for the treatment of any cancer."

While this drug worked for me, I ultimately had a recurrence while on it. But I am doing remarkably well on the next-generation of drug produced by Genentech/Roche (Kadcyla). We need continuing research into how to stop metastatic cancer.

Research Like This Promising News Out of Stanford

"Years of work lie ahead to determine whether this protein therapy can be approved to treat cancer in humans

But these early, hopeful results suggest that the Stanford approach could become a nontoxic way to fight metastatic cancer."

Because Too Many of Us Are Still Dying

"Marathon Barbie," as she was known, was serving our country in Kandahar, Afghanistan, when she found her lump. Maybe it's because my baby brother just came home from there that this story hit so close to home to me. You don't expect cancer to be the thing that kills you when you deploy to a war zone.

"Chemoprevention" May Be One Possible Answer

Would you take an estrogen-blocker if you knew it would cut your risk of developing cancer?

Komen Donates to Research, After All

I'd like to see more stories like this, please. 

"Susan G. Komen has awarded more than $2 million in grants for cancer researchers at the University of North Carolina at Chapel Hill and Duke University, the breast cancer organization announced Wednesday."

Circulating Tumor Cells Give Insight Into Metastases of Pancreatic Cancer

Lest you think I only care about breast cancer. 

"Harvard Medical School investigators at the Massachusetts General Hospital Cancer Center pinpointed several different classes of pancreatic CTCs and found unexpected factors that may prove to be targets for improved treatment of the deadly tumor."

Have You Noticed Less Pink This October?

Lots of us think it might be best for the NFL to focus on other issues in October (like, say, domestic violence) rather than parading a bunch of pink stuff in the name of awareness while only donating a paltry percent to actual research. What do you think? What have you seen?

And Another Take on What "Pink" Has Done for Us

"so before you gag at all the pink products this month, know that many help raise a lot of money. do your research. it’s like the ice bucket challenge. it’s cool to do it and send in a donation. not as cool to do it just to be funny and not contribute a penny. if you can afford a device to record a video, you can afford to donate $5."

Not Bald Enough

Last week, I stumbled across this article about Joan Lunden daring to appear bald on the cover of People magazine. How incredible of her, I thought. I wish her the absolute best. She has a rare and aggressive form of breast cancer and certainly has a grueling few months ahead. I applaud her for doing what is right for her and not shying away from the iniquities of this disease.

At the end of the article, it noted that Ms. Lunden would be kicking off Breast Cancer Awareness month (that's October, in case you've been living in a cave) with a special on the TODAY show. Specifically, it said: We're kicking off Breast Cancer Awareness Month on Oct. 1 on the TODAY plaza — and Joan wants you to join! If you have undergone treatment that resulted in hair loss, please join us for what we hope will be an empowering moment for women. Email todaypinkpower@gmail.com for more information.

So I did. I emailed todaypinkpower and -- after praising Ms. Lunden for her bravery -- gave a brief snippet of my history, that I was a 32-year-old new mom when I was diagnosed with Stage 4 breast cancer, that I've been bald twice, that I'd love to participate in an empowering moment for women (never mind that men get breast cancer, too).

To my surprise, I heard back pretty quickly. My email from todaypinkpower said, in part: We are looking for survivors or women living with cancer to share in our bold and bald empowering moment. Would you be interested in joining Joan on the TODAY Plaza next Wednesday, October 1? Where are you located? Could you make it to our Rockefeller Center Plaza in New York City? She then asked for more information: my age, location, and phone number. Oh, and could I also send a current photo.

In my crazy head, I started wondering how we could get coverage for Quinn if I was going to the TODAY show NEXT WEEK. What would I wear? Could we afford a plane ticket? Would NBC pay for that? I was getting ahead of myself, I knew, but I was caught up with the idea that a platform as huge as TODAY might start to pay attention to stories like mine. At the very least, I thought the photo might be used in a montage of some sort about women who've "undergone treatment that resulted in hair loss." An "empowering moment," if you will.

So I sent in this photo, from earlier this year. I admitted it wasn't the most recent and made a joke about what a camera hog my 3-year-old is. (He's not.)

And then I got another reply email from todaypinkpower. It said: Thank you so much for your response. We are specifically looking for women who can be bold and bald on the plaza for an empowering moment to support Breast Cancer. (emphasis mine)

My heart sank. I'd been bald twice. That wasn't enough? Had I not been through enough shit to merit the "bold" stamp of approval from TODAY? I wasn't welcome because I wasn't BALD? What. The. Everloving. Fuck. I was saddened and livid and frustrated and then humiliated that I'd gotten my hopes up. I checked the message boards for the online support groups I belong to, and I wasn't the only one.

You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents, and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I'm on. A lot of us with Stage 4 have our hair.

That doesn't mean we won't die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.

I tried to look at it from a producer's point of view. A sea of bald heads would surely make a far greater impact on television than a group of people wearing pink. And of course, this seemed to be more about ratings than actual support or empowerment or -- God forbid -- education. That didn't make me less upset about it.

Maybe this was about solidarity with Joan Lunden. I tried to put myself in her shoes. How would I have felt if a bunch of women with hair came out to support me while I was bald? Oh, wait. I experienced that. It felt fucking amazing.

Fueled by our frustration and heartache and, yes, fury over the responses we were getting because we weren't BALD, a lot of us wrote todaypinkpower back to explain how gutted we felt by her response, by TODAY's approach to October, by the fact that a lot of women are getting left out of the conversation, by the media perpetuation that you must LOOK sick in order to BE sick. Here we go again and the month hasn't even begun yet.

In what I think counts as a teensy tiny victory, on Friday many of us non-bald "metsters" received follow up emails from todaypinkpower letting us know they would still love to have us join after all, and if we were interested, here were the updated details. We just had to wear our pink.

I get it that this is television. I do. And not everyone wants a segment on metastatic disease with their morning coffee. It's not entertaining. I know that. I live it.

As much as I love New York, I won't be able to make it to the Plaza next Wednesday. But I would fly on the next plane out to NYC if they'd talk about stories like mine for even a minute.

Around the Web

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An End to Breast Cancer by 2020?

An ambitious and different approach to stopping deaths from this disease. What do you think? Is ending cancer analogous to putting a man on the moon?

Here's One Possible Approach

Let's hear it for antioxidants. I'll be curious to see what clinical trials in actual patients show.

Cancer Survival Rates ARE at an All-Time High

"But these numbers can be somewhat misleading unless they take into account advances in identifying cancers earlier, said Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Survival rates refer to how long a person lives with cancer (including in remission) while mortality rates refer to the death rate, but survival will be longer if the cancer is found earlier, even if the person dies at the same time they would have.

"People don't want to live longer with cancer," Brawley said. "They want to not die with cancer."'

Revolutionizing the Imaging of Metastatic Cancer

With a special shout-out to my alma mater, Johns Hopkins.

Explaining My "Cognitive Deficits," aka Chemobrain

Something about the hippocampus (I can't remember).

Another Possible Vaccine for Breast Cancer?

"CONCLUSION: The E75 vaccine is safe and appears to have clinical efficacy. A phase III trial evaluating the optimal dose and including booster inoculations has been initiated."

Some of the Problems with "Pinktober"

"If you’re not checking your breasts all the time and, god forbid, you end up with one of the most deadly forms of cancer, you could be to blame. In a recent Avon/Pfizer survey, over 50% of respondents believed that those with advanced breast cancers “either did not take the right medicines or preventative measures.” Cancer goes from being a fault in our genes to something we could have controlled."