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.

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

Around the Web: AstraZeneca Edition

Nope, this post is not sponsored. But I did spend last week (well, two days of it) at a conference for oncology bloggers at MedImmune, the global biologics research and development arm of AstraZeneca Pharmaceuticals. It seems more and more companies in the healthcare space are taking note of how patients communicate with each other and realizing it might be useful for them to join the conversation.

Deep in thought about oncology topics

"The role of the patient has evolved over time and today patients are more involved than ever in their healthcare and look to one another online for support, advice and a sense of community. AstraZeneca strives to engage with patients to ensure the latest information and support resources are available, and help determine where unmet needs remain."

You can read more about the AZ summit here.

I flew out to Baltimore for less than 30 hours on the ground, a whirlwind of sessions and lab tours and conversations with women I'd only previously known online, one of whom (CJ) cofounded METAvivor and has now been NED for six years. Talk about inspiration.

Here are a few of us touring the lab and looking "distractingly sexy," if I do say so myself.

Touring the Phase I Oncology Lab at MedImmune

Speaking of sexy --  how was that for a transition? -- I'm working on a separate post about one of the summit's sessions. It was led by Dr. Sage Bolte and focused on intimacy after a cancer diagnosis, which is not a typo.

But we still have a lot going on here as a family and I'm in a chemo fog this week, so please be patient with me. In the meantime, here's what I've seen around the web since I last posted this series. One of these days, I'll try to be regular about it!

Even More Reason to Cut Back on Stress After a Cancer Diagnosis

"Recently, researchers have discovered that the hormone progesterone, an ingredient in contraceptives and menopausal hormone replacement therapies, might stimulate the growth of breast cancer cells that are resistant to anti-estrogen therapy and chemotherapy. Now, new research published June 22nd in the journal Oncogene, a Nature publication, shows that additional hormones, including stress hormones that are frequently used to treat the side effects of common chemotherapy, could make these effective cancer drugs fail sooner in some women with breast cancer. But there may be ways to counteract the effect."

Promising Results in the Paloma-III Trial for Ibrance/Letrozol

(Which, if you'll remember, was fast-tracked for FDA approval pre-trial results back in February.)

Liquid Biopsies Are All the Rage, But Are They Helping Patients Yet?

"So far, most insurers, including Medicare, don’t pay for these kinds of tests. They don’t think it’s their role to underwrite what looks like a research experiment. Health insurer Anthem labels the tests “investigational and not medically necessary.” Cigna calls them “unproven.”

Eventually, the most important use of liquid biopsies should be to catch signs of cancer early, before symptoms arise—when a surgeon can cure it by cutting it out (see “Spotting Cancer in a Vial of Blood”). Such screening could profoundly reshape cancer medicine.

For now, though, they are being used as “theragnostics”—that is, tests that guide decisions about treatment."

THIS is Why We Walked and Lobbied All Over Capitol Hill

"Cyrus Ghajar, Ph.D., a metastatic breast cancer researcher at Fred Hutchinson Cancer Research Center, has received a $4.1 million Department of Defense Breast Cancer Research Program (BCRP) “Era of Hope” Scholar Award.

The Department of Defense’s BCRP is the second biggest funder of breast cancer research in the U.S. Its Era of Hope award encourages high-impact, collaborative research, particularly among innovative young researchers."

Huge Implications for the Future of Treating Genetic Cancers

“In 10, 15 years, our relationship with genetic disease will be very different from today,” says Jacob Corn, managing director of the Innovative Genomics Initiative—a joint effort of UC Berkeley and the University of California, San Francisco—which is collaborating with drug maker AstraZeneca on using Crispr-Cas9 to gain a better understanding of diseases. “It will be, ‘Oh, my child was born with sickle cell. We’re just going to change that.’ ”

Why Nearly EVERYONE is Excited about Immunotherapy

"10 years to cancer cures 'actually plausible,' Fred Hutch president says. . ."

“And I’ve never seen anything like this in my life,” Gilliland continued. “You give this cell-based therapy that was developed by [Drs.] Stan Riddell and Phil Greenberg at the Hutch, and these tumors just melt away. People go into continuous, complete remission. You don’t need to keep giving the drug, you give it once. One infusion — that’s it.”

The potential for extending this powerful approach into other types of cancer, especially solid tumors, has created a sense of urgency among researchers at Fred Hutch and elsewhere."

An Illustration of How Immunotherapy Works

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

{image source}

Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.

Are We Terminal?

When my friend Brigid died earlier this month, I found myself thinking a lot about my own mortality. (As these things go.) I've been living with advanced breast cancer for more than three years now, the last ten months in chemo-induced remission. But the average lifespan for someone with my illness is still twenty-six months. I've never thought of myself as terminal, but many people will describe this disease with that word. I began to wonder if I was just being wishful in my thinking.

I reached out to a group I belong to online, a support group for people with metastatic/stage 4 breast cancer to pose this query: Question for you all: how many of you think of yourselves as "terminal"? I don't know if I'm just a naive optimist or blindly mistaken but it's just never been a line of thinking I've been able to go down. After losing a (yet another) friend this week, I'm wondering if I've got blinders on.

I was surprised by the number of responses my post elicited. It received dozens of comments, mostly optimistic and all thought-provoking. I got permission to share a few of their comments here, to share their wisdom and the breadth of their experiences with all of you. These are the women who inspire me on a daily basis. You can see why.

(And if you want to donate to research for metastatic breast cancer, Metavivor is a great place to start.)

[photo credit]

***

I'll occasionally find myself saying in my head 'I have a terminal disease.' Honestly though, I'm not even sure what that means. I don't feel like I'm dying. My husband took a turn too fast on our motorbike a couple of days ago and we splayed out all over the road - I was definitely a lot closer to death then than I am now! Plus, most of my friends aren't even married yet. We're just starting to have acquaintances with kids. I can't be old enough to be terminal, so I'm just not, at least not right now. - Anonymous

I like to live in a healthy state of denial. I'm pretty sure I know what will kill me but I'm not dead today. So, I know the gravity of my situation but don't allow it to define me. It's a fine balancing act.....  I take it a scan at a time. I live in 3 month increments.... When that's too much, I take things a week at a time. Too much? A day at a time. Still too much? Take it an hour at a time. I get it. This isn't the life I had planned for myself or my family. But it's the life I was given. - Cristin

I've been NED for 7.5 years and still consider myself terminal. I think its because that's how it is "officially" classified. I just accepted it and mourned it and then as the years went by kind of just got on with it. I didn't think I'd make 40 and spent my $ like it too..lmao. I tell people it's terminal also to not minimize it but only when someone really probes. I also subscribe to the everyone is terminal mantra...I've had so many sudden losses and seen "well" people die while I'm still on one drug....so I know anything can happen to anybody at anytime. - Teresa

At least I have some idea of how I will die and what to expect (even though it sucks) and I can plan - I have already done my bucket list - and yes - some people will hate me for saying this but I feel lucky at the moment - it has me more in tune with others and what they are going through - it is important not to totally let it be only about YOU - I think more of others now. - Carter

I think of it as living with a dual awareness. I am completely aware that my disease is terminal but I think of myself as living with advanced cancer. Saying that, I do say 'I have terminal breast cancer' because I find for the most part people don't understand how serious it is and that I will never be cancer free. Right now I look well but that doesn't change the fact that I'm 99% sure I'm going to die young of breast cancer. - Anna

Not terminal right now. I'm in complete remission.... I think it makes women "feel" better if their cancer is one pathology over another. Or only in their bones versus their liver. It is like they are putting their hope that they might not die soon in the characteristics of their disease, when that is completely unpredictable. I personally prefer to put my hope in God who alone knows when I am going to die and trust that will happen in His good and perfect timing. - Roberta

I consider myself to be living with a chronic disease. Living with...not dying of cancer. Heart disease actually kills more woman than MBC [metastatic breast cancer]. That being said I'm pretty sure what will take my life...eventually. - Roxanne

I think of myself as living with cancer. When I go into hospice that will probably be when I consider being terminal. - Lori

I do refer to myself as terminal just to make a point to others, but the more drugs that aren't working the more discouraged I become. I do live each day to the fullest and enjoy every moment, but certain days I'm scared shit especially when tumor markers go up, scans show progression, horrifying side effects happen, etc. - MaryAnne

I subscribe to life is terminal, none of us are getting out of here alive. Every day is a blessing and I love life. Until they say sorry we can't do another thing and I agree, I am not terminal. If this is naive so be it! - Janie

I don't mean this in a downer way, more of in a Buddhist way. We're all terminal, dying. We don't know how or when. Life is fragile. Appreciate each moment, each day. - Laura

Never even thought of it as terminal. - Deborah

When I decide that it's time, then the life threatening part will take over, and there will be Hospice for me helping me to still live to the best of my ability until I actually die. I intend on being happy throughout this! - Mary

I'm so sorry about your friend. It is impossible at times to process all the losses..... I try to walk through yet wear them loosely, if that makes sense. To answer your question, no I don't think of myself as terminal at this time. I'm living with metastatic disease. Although it's in my stomach, lymph nodes and bones I'm still on the first course of therapy prescribed. I hope -- but can never be sure -- to have years between now and the time when I am terminal. Like all of you I live with that great uncertainty and most of the time it's ok. - Jody

I just never went down the road of "terminal"..... I always knew I would not die from Stage IV breast Cancer even when I was diagnosed with stage IV! I decided I would fight with everything in me and that started with positive thinking.....blinders - maybe. Whatever works. Six years later I am now NED! The doctors say I have far surpassed their hopes for each of my treatments.......I attribute it to my positive thinking, many prayers and yes my blinders or what I believe each and every one of us lives with to get through each day - a little bit of denial..... Healthy denial. - Serenity

I also don't consider it terminal like most of the ladies above me have commented. Life comes to an end at some point and it might be cancer that ends it or it might be a herd of unicorns stampeding over me. Life's tricky like that. I do try to explain to people that even though I am currently NED that I am not "cured," I will be on herceptin/perjeta for as long as they work and I might still have surgery and radiation coming up. Usually people don't understand which I'm coming to terms with. - Tricia