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

Where to Turn for Help After a Cancer Diagnosis

I've got a few things brewing over here, including an event that's taking Quinn and me to New York City next week (more on that to come) and the fact that I sent my completed manuscript to my agent last week (!!!) I'm excited to share all of this with you guys as it unfolds, and I hope with every ounce of my being that what I'm doing -- all of it -- is of service to the metastatic breast cancer community.

{here's a hint about our NYC trip}

As part of one of these initiatives, I was on the phone the other day with a woman who's working on a story about living with metastatic breast cancer for October, that loaded month, and she asked me whether I felt there had been enough resources and support services when I was first diagnosed.

Um, NO, is the quick answer.

But it got me thinking that I should write about the resources that have emerged and what I've found useful, in case it might help someone else out there. Have any to add? Please leave a note in the comments!

• One major source of information was Dr. Susan Love's Breast Book,* which is now in its sixth iteration. I especially appreciate that this new edition includes an updated chapter on metastatic disease that offers some hope for emerging therapies and longevity. This book has been called "the bible for women with breast cancer," with good reason. When I was first diagnosed, I wanted to know as much as possible about the cancer inside of me, without the fear that can be brought on by "Dr. Google." Here was my answer, clearly laid out in the pages of this easy-to-read book. Fully indexed and written for the layperson, Dr. Susan Love's Breast Book takes a comprehensive look at breast cancer prevention, staging, treatments, pathology, and emerging research. In a field where new information is always emerging, this book offers a treasure trove of the latest data.

• I have a love/hate relationship with support groups, both online and in-person. I love the potential of what they have to offer, but participating in them can be an emotional roller coaster. After all, you get close to people and in many cases, you have to face their worsening health or death. For awhile after my first course of treatment -- and every once in awhile since then -- I need a break to let my emotions recover a bit. When I was first diagnosed, a friend referred me to the Young Survival Coalition's Facebook support group. At the time, it was both a treasure trove of other women who were going through the same treatments as I was and a place where I didn't feel I completely fit in because there weren't many women with metastatic disease (fortunately). In the last four-plus years, I think YSC has done more to support metsters, but other groups targeted at young women with Stage 4 breast cancer have also emerged on social media. If you want to be added, find/message me on Facebook (link from the button on my blog). Note that there are fairly strict privacy rules on these boards. 

• Speaking of social media, you may have heard me mention the Twitter chat with the hashtag #bcsm. This takes place on Monday nights at 6 PM Pacific / 9 EST. Topics range from the invisible scars of breast cancer to parenting with cancer to how to change the conversation around metastatic breast cancer. The chat is for all stages and ages, but is an excellent way to share information and find support. 

• I have mentioned before how lucky I am to have the health insurance and access to care that I do, but I know everyone isn't so fortunate. I do think that the Affordable Care Act has made significant strides in ensuring access to care. I, for one, am relieved that I can't be denied insurance despite my poor health history. For assistance with co-pays and drug costs, check with the drug company providing your drugs. I know Genentech, the company that makes Kadcyla, has patient assistance programs to offer reduced-cost drugs to patients whose insurance doesn't cover the cost.**

• On a similar note, the reason I walk in the Avon 39 Walk to End Breast Cancer every year is because of the programs they fund to provide everything from free screenings to women who can't afford them to meals to people who've been diagnosed with cancer. Obviously, services will vary depending on where in the country you are, but here are a few national organizations:
• Cleaning for a Reason: "Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer. Our goal is to let these brave and strong women focus on their health and treatment while we focus on, and take away the worry and work of, cleaning their homes– free of charge." I reached out to this service early on in my treatment and they didn't have any partnered cleaning companies in Phoenix/Scottsdale, but they may be worth a try in your area.
• Look Good/Feel Better: Because sometimes a little blush does make it easier to face the day.
• Little Pink Houses of Hope: Offering family beach vacations/retreats for people directly affected by breast cancer.
• First Descents: If you're feeling adventurous, First Descents offers surfing, rock climbing, white water rafting, and ice climbing (!!) trips for cancer survivors.

• Other national organizations offer links to local support services. For example, the American Cancer Society has a location-specific searchable database for everything from free wigs to counseling/therapy. Living Beyond Breast Cancer is another excellent source of information, including a search function for clinical trials specific to metastatic breast cancer. 

• Finally, I have heard excellent things about the Livestrong Foundation's fertility services, for those of us who've lost ours to cancer and/or cancer treatments.

What resources do you wish there were more of? What have you found especially useful? What have I left off this list?? And PLEASE let me know if you've gone on a surfing trip and/or family retreat -- I'd love to hear how that went!

* Dr. Love recently provided me with a free copy of this 6th edition, but I already had the 4th edition on my bookshelf. All opinions on the book are my own.

** One of my best friends works for Genentech, but I have not talked to her (or the company) about this post.

Around the Web: Italy Edition

Thanks for the great feedback about keeping this series here. (Although it seems as if once a month might be my posting schedule for a lil' bit.) I've been pulled in a lot of different directions lately, not all of them deserving complaint. And to all who checked in and suggested I stop to get some rest, I've taken note, I promise.

As I write this, we are were in the midst of reconnecting with each other as a family in Italy. The month prior to our trip felt like a strange square dance in which Chris and I kept passing Quinn off to one another without stopping to a) dance with each other or b) rest our feet as a family. We've needed this time for awhile.

This was my first time to Italy, and I wanted to pinch myself at every passing gondola or square with a lion-spitting fountain in its center. There have been moments since we arrived when I've caught my breath in my throat to ward off tears because these are things that a couple of years ago I thought I might never get to experience.

I might never come back. (Spoiler alert: I came back. But I'm still considering a future move to a pied-à-terre in Rome, on the off-chance I could get my insurance to approve Kadcyla infusions abroad and convince Chris that a sabbatical there makes sense.)

We're doing a lot of walking, so I'm not sure we'll get much actual rest for our feet, but we're being fueled by pasta and wine and gelato so I think we'll be okay.  We averaged more than six miles a day, and Quinn kept up like a champ. We were more than okay. Now that I'm home, my body actually craves the movement...and the gelato. More on how to do a trip to Italy with a 4-year-old coming up in a post soonish.

Posts might be a little spotty here for a couple of weeks, but I'll try to manage an occasional photo of my bambino enjoying the sights. We had really terrible internet coverage when we had it at all, then I was too jet-lagged to even form sentences for a couple of days, and then I had chemo on Friday so I'm still having trouble forming sentences. But I do hope you saw some of the photos of Quinn over on my Instagram account.

A photo posted by Jen Campisano (@jencampisano) on Jun 1, 2015 at 1:07pm PDT

Here's what I've seen around the web the last couple of weeks month. If you have something you'd like me to include in future editions, please send me an email (jen dot campisano at gmail).

Grazie, bellas!

There Was This Depravity (Or, Pay Close Attention to Where and to Whom You Give Your Money)

"In its complaint, the F.T.C. called all four of the cancer groups “sham charities,” charging the organizations with deceiving donors and misusing millions of dollars in donations, including putting money toward personal expenses like carwashes and college tuition, from 2008 to 2012."

There Was This Loss

“Of course I wish I had more time,” she told the Jewish newspaper The Forward in 2009, after learning that her cancer had returned. “I would love to see grandchildren, to see weddings, to be a part of these amazing things for more time, but I love life and don’t want to spend any of it mourning the loss of that which I can’t have. I’d much rather embrace that which I do.”

And This One, Which Seemed to Shake Our Entire Nation

""It is with broken hearts that Hallie, Hunter, Ashley, Jill and I announce the passing of our husband, brother and son, Beau, after he battled brain cancer with the same integrity, courage and strength he demonstrated every day of his life," Joe Biden said in a statement issued by the White House."

But also some uplifting news...

New Device Brings Us Closer to Understanding Metastases

"Metastasis occurs when cancer cells break away from a tumor and travel to distant parts of the body—the most dreaded event for a cancer patient. It is a mystery why some cells are able to travel through the body while others are not. Researchers from the University of Michigan, comprising a team of oncologists and engineers, have developed a new technology to help unlock this code.

A groundbreaking new study released in “Scientific Reports” describes a device that is able to sort cells based on their ability to move. The device allows researchers to take the sorted cells and compare the ones that are highly mobile to the ones that are less mobile. Understanding the differences in gene expression between these two types of cells can help identify why some cancer cells can spread to other parts of the body."

And a Potential Solution for Overcoming Her-2+ Drug Resistance

To be clear, this is still in the earliest, pre-drug stages. Super cool stuff nonetheless.

"There are currently no approved treatments that specifically target the ability of HER2 cells to join together or with other proteins, an essential first step in tumor growth. Lupu and her colleagues are now confirming the antitumor activity of this potential HER2 “master switch” in animal models. They will then move on to clinical testing, and the investigation of drugs—such as mimetic agents, targeted antibodies, and small molecules—that could specifically block this site responsible for HER2’s oncogenic potential.

“This drug does not yet exist; it is a promising area of future research,” said Lupu. “We believe that there is definitely hope because this is the first time that anybody has identified any region that blocks homodimerization and heterodimerization, which will simplify the treatment of the cancer. Rather than combining two, three or four drugs together, this will be a one-stop-shop.”"

How Breast Cancer Spreads to Bones -- And a Simple Way to Stop It

In my mind, this is HUGE news.

"Breast cancers can manipulate the structure of bone to make it easier to spread there, a study has found.

Researchers at the University of Sheffield said the tumours were effectively "fertilising" the bone to help themselves grow.

The study, in the journal Nature, said it may be possible to protect bone from a tumour's nefarious influence and consequently stop the cancer's spread. . . .

The animal tests also showed that a set of osteoporosis drugs called bisphosphonates could prevent the spread of cancer.

Bisphosphonates also interfere with the way bone is recycled in order to strengthen it.

They are already given to some cancer patients, but the Sheffield team believe they could have a much larger role."

Promising Early-Phase Clinical Trial Results Against Stage IV Her-2+ Breast Cancer 

"Promising clinical trial results presented at the American Society for Clinical Oncology (ASCO) Annual Meeting 2015 show activity of the investigational anti-cancer agent ONT-380 against HER2+ breast cancer, in one case specifically against brain metastases and in another case in overall survival of heavily pretreated HER2+ breast cancer patients.

"I am thrilled to have been able to offer this therapy to a patient in her early 40s. She didn't have any other great treatment options that we would have expected to have any meaningful impact, especially on her brain. Now she's been on the study over a year. The mets in her body are gone and the brain lesion has shrunk down to a little nubbin. She's living a normal life, fretting about the family business and how the kids are doing -- normal stuff," says Virginia Borges, MD, MMSc, director of the Breast Cancer Research Program and Young Women's Breast Cancer Translational Program at the University of Colorado Cancer Center and one of the study's authors."

Study Shows Complete Response for Some Patients with Metastatic TNBC 

"Immunomedics, Inc., (IMMU) today announced that among 49 patients with metastatic triple-negative breast cancer (TNBC) evaluated for response to treatments with sacituzumab govitecan in a mid-stage clinical study, 31%, or 15 patients, showed a reduction in tumor size of 30% or more. They include 2 patients with complete response. Response assessments were based on the rules set by the Response Evaluation Criteria In Solid Tumors (RECIST 1.1). Adding the 22 patients with responses between less than 30% tumor shrinkage and less than 20% tumor increase, the disease control rate was 76%. . . .

The U.S. Food and Drug Administration has designated sacituzumab govitecan a Fast Track development program for the treatment of patients with TNBC who have failed prior therapies for metastatic disease and patients with small-cell or non-small cell lung cancers."

And Promising News on the Cancer Front in General (out of the ASCO 2015 Annual Meeting)

"A new drug that unleashes the body’s immune system to attack tumors can prolong the lives of people with the most common form of lung cancer, doctors reported on Friday, the latest example of the significant results being achieved by this new class of medicines.

In a separate study, researchers said they had found that a particular genetic signature in the tumor can help predict which patients could benefit from the immune-boosting drugs.

The finding could potentially extend use of these drugs to some patients with colorectal cancer, prostate cancer and other tumors that have seemed almost impervious to the new drugs. Most of the substantial results so far with these expensive drugs have been in treating melanoma and lung cancer."

A Way to Eliminate Many Types of Cancer Cells -- At Least in Mice

"A type of immune cell can be primed to attack and eliminate various kinds of malignant cancers in mice, according to a study by Stanford University School of Medicine researchers.

The researchers studied mouse models of melanoma, pancreatic, breast and lung cancer and found that their technique could eliminate not only primary tumors, but also distant metastases throughout the body.

“The potency is impressive,” said Edgar Engleman, MD, PhD, a professor of pathology and of medicine at Stanford and the senior author of the study. “You actually see tumor eradication.”"

My Teammates In Their Own Words (Plus A Few of Mine)

I've mentioned once or twice that I'm about to lose the second toenail on my left foot. The same one on my right foot is in questionable territory. For about a week after the walk, every time I pressed down on my left toenail, a stream of blister liquid would squirt high into the air like the fountains at the Bellagio. The erupting has finally subsided, but my toe still throbs at the end of the day, a steady drumbeat bringing me immediately back to the 39.3 miles in Washington, DC the first weekend of the month. Plus another 4.8 miles criss-crossing Capitol Hill the Tuesday afterward to advocate to whomever would listen for an end to breast cancer. My feet were not entirely pleased, but they will recover.

A few of us in front of President Obama's house.

As my friend and veritable co-captain Ginelle says, it's not like I'm losing another body part. The blisters are painful. But as many shirts and temporary tattoos over the weekend read: "Blisters are temporary. Fierce is forever." And toenails grow back. Breasts, sadly, do not.

Ginelle brings me to near tears every time she describes the metaphors surrounding the walk: the pain and frustration when you don't think you can keep going, but then you remember it's temporary. It's only two days. The walk certainly isn't chemo, but it gives a peak into the determination necessary to push through when the going gets rough. Looking around, there are women and men in far worse shape, forging ahead despite their obvious limping. There are kids who've recently lost their mom and who stop at every mile marker to wipe away their tears and take a proud selfie. So you see all these people marching onward, and it pushes you to keep going, too.

I asked my teammates, many of whom were first-timers, for their thoughts on the walk. I am beyond flattered by what they had to say about me, and largely because of them I'm inspired to do this all over again next year. Here, in their own words, are some of their descriptions of our weekend in Washington.

Amy: Being part of it was simultaneously so difficult and so meaningful, and feels at the same time like a big accomplishment and yet also such a tiny drop in a giant bucket for what is needed. My main feeling seems to be thanks - thank you for letting me walk with your team and your friends, and thank you for letting me lend the support I can. The idea that maybe a few dollars that I helped raise will give women with no health insurance access to mammograms, or feed a few families when they are wanting to do anything but cook for themselves, is such an important one for me. And the hope that this foundation supporting mets research so that women like you can continue to be such amazing role models, mothers, and writers is just more than I can think or even talk about very eloquently.

Ginger: I now have an appreciation for the number 39. One of the most painful but rewarding experiences of my life. Despite my mental resolve to keep going, I kept feeling like my body was failing me--a perfect illustration for what survivors endure. Thank you to everyone who has supported us--you were all with me yesterday and today.

My 39 miles were dedicated to my mom, Betsy Elliott, who is a survivor of DCIS breast cancer (that is, ductal carcinoma in situ and caught early, thank goodness). She is recovering fully after a unilateral mastectomy in March of this year.

Now that my feet have begun to recover, I'm already considering next year's Avon Walk.

The 16 of us crossing the finish line on day 1.

Jess V.: It's amazing how many tears and thoughts that come over you as you walk this long walk. I feel so honored to have been a part of this team. Thank you, Jen, for leading us through a wonderfully rewarding weekend, yet again.

As I told [my husband] and the others who asked me how the walk went - this one was harder. I didn't train. I bought the wrong shoes (without much support). I said with confidence "I never get blisters" and got several epically huge blisters. By mile 10 on the first day I started to have significant tightness in my legs and difficulty walking with a normal stride. But it's really easy to get over that pain when you walk by a woman clearly in the process of fighting cancer. Suddenly your legs don't hurt as much and you realize how easy your pain is versus theirs.

I can't wait to do it again next year. I'll be signing up tomorrow just because I'm too wiped out to do it right now.

It was such a wonderful experience walking with you all. Looking forward to Avon Chicago!

Beth V.: You people are all so amazing, not only for participating in this amazing walk, but also with the fundraising. For a team of 16 to raise as much money as we did is incredible (obviously a testament to the smarts and savvy of our team, and especially our team leader, Jen!) As for the walk itself, I appreciated the collaborative nature of our team and how we stuck together. I didn't expect that a group our size would--especially in light of the many potty breaks--and was pleasantly surprised. Our solidarity as a team and commitment to an important cause so close to all of our hearts made this weekend particularly special for me.

Thank you all for a fun, positive, successful and memorable experience.

I look forward to seeing everyone again soon!

The kids who brought me to sobs on the trail, with a photo of their mom holding them as toddlers hanging from their capes. She died of metastatic breast cancer last year.

Kacey: My impressions from this weekend all come down to community. I was so moved by how many people came together to make this walk happen for us. I was completely blown away by the donations I received. The number on my personal page is a little off because I shared a lot of the donations I received with team members who were under the minimum a few months ago, but I think I raised a total of close to $8,000. Most of my donations were small amounts - it was a very grassroots effort! And many donors gave more than once.

When Nora and I organized our wine night fundraiser, we ended up with more silent auction prizes than we knew what to do with because businesses and friends were so generous. We were so worried that the night would be a bust and we'd end up giving away these amazing prizes. But we were shocked by how many people came out and the volume and amount of bids we received. It was truly inspiring.

The weekend of the walk, we had so many supporters. Dan and Sarah hosting us for a pre-dinner walk, Tim traveling down from MD to walk a few miles with us, my own husband trekking all over DC to find us so my kids could hold up a sign for a few minutes (and the baby could eat!), plus all the husbands behind-the-scenes who watched little ones for the entire weekend so their Moms could do this. That doesn't even include all of the strangers who stood on street corners, dressed in crazy outfits, cheered, handed out candy, high-fived, and generally kept morale up.

By mile 10 on Day 1 (just 1/4 of the way done), I really didn't think I would be able to keep going. Everything from my waist down hurt. But I thought about everyone who supported my efforts to be there and everyone who was relying on me and I just kept going. It was only two days of my life and nothing some ice and an epsom salt bath couldn't cure.

If being out there and being a part of the community that made this walk possible has in any way helped put an end breast cancer, then I'd walk it a thousand times over (perhaps after training a bit more, though?). Thanks so much for letting me be a part of this incredible team, I really do consider it my privilege to have been there.

Too many names.

Jessica D.: I was inspired to sign up for the Avon 39 in D.C. right after Jen and Team Booby and the Beast completed their 3rd walk in 2014 in San Francisco. I continue to be amazed by Jen’s strength, as well as the advancement of breast cancer treatment, and wanted to do all I could to raise money to continue research efforts in the field.

As I tend to do with any trip, event, or race (guess it’s the engineer, or now the ‘mom’ in me), I plan, make lists, check them twice, and worry about the little details. I set out on a training plan walking miles and miles around Tempe before dawn, rallied lots of support among my family, friends, and co-workers, and made sure I had all the right gear for the big weekend.

However, nothing can quite prepare you enough for how incredibly moving this event is. The support of honking car horns; the spectators providing countless high-fives, candy, baby wipes, and some tunes to put a beat in our steps; and most importantly, the bond among our team members that was solidified throughout the journey were more motivating than words can even describe. I am truly thankful for being a part of this memorable experience, and can’t wait to do it all over again! Thank you, Jen, for letting me be a part of it all!

Shelby: Every year I'm amazed by the impact this walk has on me. To say that walking alongside Jen and an incredible group of amazing women and men, for the third year in a row, is a remarkable experience feels like such an understatement. The weekend is absolutely amazing, emotional, inspiring, challenging, empowering, and rewarding as we raise money for breast cancer research and to fund access to care for those without the means. As soon as we cross the finish line, hand-in-hand with our awe-inspiring Team Captain, I look so forward to next year's walk. Thank you Jen for continuing to share your story, for inspiring so many, and for allowing us to share this incredible experience with you. I feel honored to have been a part and to have walked alongside each and every one of 2015's Team Booby and the Beast. Here's to Chicago 2016!

Gretchen: There isn't much to say that hasn't been said. I just wanted to say THANK YOU, Jen for inspiring us and for the opportunity to walk with you. Team Booby and The Beast is a powerhouse! This amazing group of men and women surrounding you is a testament to the absolutely fabulous person you are. Team, I was honored to walk with each and every one of you.

At the finish line on the National Mall.

Meaning To Unite or Join Together

Over the weekend, close to seventy-five people showed up to practice yoga at an event my friend Jenn and I put together to raise funds for the Avon 39 Walk to End Breast Cancer. In addition to the donation-based yoga class, we held a silent auction, with donations from local artists, salon owners, yoga teachers, health coaches, and one of my favorite (non-local) wine makers. 

Jenn led us all in a beautiful flow emphasizing our prana, or life force. After all, we were there to celebrate life, to raise money that will fund research to extend people's lives and improve the quality of their lives, and help others live easier lives in the midst of a cancer diagnosis by providing meals, transportation, and treatment options. 

We were celebrating my clean scan from earlier in the month, too. I smiled with every breath and gave my little guy a kiss with every chaturanga. I am so fortunate.

{Quinn watching me practice}

In Sanskrit, yoga means "to unite" or "to join together." In practice, we often think of it as joining our breath and our movements, our minds and our bodies. But it is also about coming together as a community. About supporting each other and the world around us in little, meaningful ways. 

On Saturday, the roomful of us breathed together, moved together, sweated to some great music together and then ended the class with one of the most powerful experiences I've ever had in a yoga class. It was simple. All Jenn did was ask everyone to form a circle around me and send good energy my way. We all touched the shoulder of the person in front of us, or held hands with someone next to us, some of us praying, others of us thinking positive thoughts for healing and love and growth. We sat there for several minutes in sweaty, happy peace, and then, in tears, class was ended. 

{After class, with the incomparable Jenn Chiarelli and her daughter, Grace}

When all was said and done, we raised more than $2,000 for breast cancer research and support that day (our team is above $46,000 as of this writing). Almost equally as important, we raised our awareness of one another, of the struggles we all face, and how to ease that burden for each other just a bit, sometimes simply by holding one another's hands.

To everyone who came out to support me and this cause on Saturday, who donated your time, your art, your t-shirts, your space, or your goods or services: thank you. I can't thank you enough. I know I say it over and over, but I am so lucky. My heart is so full.

As I said on Saturday:

"Medicine is making huge strides these days, and I know chemo has saved my life.

But I also believe in this community, in the power of community. You all practicing next to me, or inviting my son for playdates when I can hardly get off the couch, or gifting me Reiki sessions because there is healing power in touch has absolutely bolstered me up over the past few years. I wholeheartedly believe I wouldn’t be where I am today if not for yoga, if not for this community, if not for all of you."

What is Team Booby and the Beast All About, Anyway?

Today is a chemo day for me. This means I take Quinn to school, try to get in a workout because I know I won't be feeling up for one for another few days, have a little lunch, and then drive to the infusion center about half an hour away from my house.

Kathy or Wes will gather my vitals: weight, blood pressure, heart rate and oxygen levels, and temperature. Then I'll choose which recliner to sit in and wait for a nurse. Nickole or Angela will access my port as we chat about what we've been up to the past three weeks; mostly, we talk about our kids. "Take a deep breath," one says as she swabs the raised area on my chest with an alcohol pad. "Okay, now exhale," and I do, as a needle goes in and she takes a few vials of blood to test my blood counts, my electrolytes, my liver enzymes, my tumor markers.

Mostly, my labs look good. Then they hook me up to the infusion of pre-meds. I get anti-nausea drugs and steroids. By the time these are finished, I've been at the center about an hour. Then chemo starts. It doesn't feel any different. It takes about thirty minutes. Afterward, they monitor me for another thirty minutes to make sure I don't have any adverse reactions. A week later, I have to return for more blood work, just to make sure I still have enough platelets, still have enough white blood cells, still am not anemic. Mostly, I'm okay.

My routine has been exactly the same, every third Monday and then again the next week, for nearly two years. I've been visiting this infusion center at least as often for three and a half years, since I was first diagnosed with metastatic breast cancer in August 2011.

I know how lucky I am to have the care I do. I am lucky that my infusion center visits only take a couple of hours (plus driving time), that I am able to drive myself to treatment, that my insurance pays for nearly everything, that I have a dear friend who comes to visit with me most treatment days, that my nurses know me and my family and take an interest in our lives, that my treatment is working. I could go on and on. I am so, so lucky.

Not everyone has these luxuries. Too many people don't have ready access to quality healthcare. It's too far to drive or too expensive, or the medicine doesn't work because we still need more answers about more types of breast cancer. I know too many people who've died because of this disease, and many, many more who are hoping their next chemo combination will work so they can have a few more months (or, God-willing, years) with their loved ones.

***

If you've been following my blog for a little while now, you know I've been walking in the Avon Walk for Breast Cancer since 2012. I was bald that first walk and in the middle of some intense treatment, but Avon asked me to be the Survivor Speaker at the opening and closing ceremonies. I'd never spoken in front of 3,000 people before, but that crowd of people gave me courage.

{after my first walk, Santa Barbara, 2012}

As I crossed the finish line that year, holding hands with my unofficial teammates Ginelle, JT, and Sheryl, I was overcome by such a rush of emotion that I immediately signed up for another walk in 2013. And then another.

{after my second walk, San Francisco, 2013}

Why Team Booby & the Beast?

Last year, the three women who walked with me and I decided to form a team, Team Booby and the Beast, which allows us to fundraise together or individually. Mostly, though, it is a way to show our solidarity with one another, to stand and walk and cross finish lines against this disease as a unit.

{following walk number three, San Francisco, 2014}

This year, SIXTEEN of us are on this team: Alana, Amy, Beth, Beth, Daurie, Ginelle, Ginger, Gretchen, Jess, Jessica, Kacey, Leslie, Nora, Rashmi, Shelby, and myself. We have already raised more than $20,000. We are aiming for $50,000.

We will all walk more than 39 miles over the first weekend of May in Washington, DC. We will probably wear obnoxious amounts of pink and undoubtedly there will be signs cheering us on that say things like: "Save the Tatas." I will want to remind those people that it's not about tatas, it's about lives but I won't say anything because after all they're cheering us on on a Saturday when they could be running errands at Costco.

Undoubtedly, some people will walk for a mom or sister they've just lost, and I will start crying, right there on the trail, when I see the emotion on their faces. Most likely, the volunteer who hands out shirts at the end of the walk will be surprised when I ask for a survivor shirt. "You're too young!" she'll say, and I'll think I wish.

I will be reminded over and over again how lucky I am.

Why do I walk?

I was recently asked if my fundraising was to help with my personal medical expenses. It is not. I am remarkably, unquestionably fortunate in that regard. I thank my lucky stars every single day. My husband's job at Arizona State University provides us with exceptional healthcare benefits, and our out-of-pocket expenses over the last few years have been relatively minimal.

Even after I had to leave my career as a lawyer, even given the loss of my income and the inconvenience/nightmare (depending on who you ask) about how we would repay my student loans, we are okay. We don't always repair what needs repairing in our house right away, but we have a house. In a safe neighborhood. We have two cars and a garage to park them in. Our cupboards are full. I can afford to take Quinn to school while I get treatment. This is no small thing.

We also have a strong community of friends and family who've stepped in over and over and over again to support us as we coped with the shock of my diagnosis, navigated less daycare/preschool after I left my job, my ongoing treatment, and a surprise surgery while Chris was on his way to a conference in Tennessee so that he can keep his job and we can keep our healthcare.

So I walk because I owe it to the Universe. I'm not trying to be trite or flippant. I walk because I have been luckier than I ever could have imagined, and this is the best way I know how to give back right now. I walk to help women who are not as fortunate, to raise money for research funds -- for a cure someday, yes, but also for more advancements where they're terribly needed right now, so that more women can have more years with the ones they love. So they can raise their children and love their spouses and drink a glass of wine with their best friends. So they can worry about work deadlines or meal planning or other minutiae instead of cancer and all its devastation.

Why the Avon Walk?

There are many walks/runs that support breast cancer research and education. I chose Avon because of their commitment to funding care for women who wouldn't otherwise have it. Because they give millions of dollars in grants to research. And because they didn't shy away from featuring my story of living with Stage 4 breast cancer; instead, they asked me to tell it to 3,000 people while I shared a stage with Fergie.

Since 2003, the Avon Foundation for Women has organized several walks each year in select cities around the country. The money raised funds local research facilities, services for women in underserved communities (including screening and treatment), and provides support for the families of those affected by breast cancer.

In Washington, DC, grants have been awarded to recipients that include the Johns Hopkins University (my alma mater), the Capital Breast Care Center, and Food & Friends, which provides meals, groceries, and nutrition counseling to people living with life-threatening illnesses such as cancer.

***

I know this has been the longest post ever, but this is important to me. It's my little tiny way of paying it forward. If you'd like to support me or my Team, you can click here, or stay posted for details on an upcoming fundraiser in the Phoenix/Scottsdale area this spring which will be headlined by my friend Jenn, a woman and friend whose generous spirit I strive to emulate. Stay tuned.

{my friend Jenn Chiarelli, photo source}

And thank you. I couldn't do any of this without you all, and I love you all for it.

Team Booby and the Beast Goes to Washington

As Breast Cancer Awareness Month comes to a close, I thought what better time to announce I'll be walking again in the Avon Walk for Breast Cancer? Because if I'm going to advocate for action, this is an act I can take. I can still walk. I can write about my experiences. If that helps one other woman speak up in her doctor's office when she might have otherwise ignored the twisting in her gut about a lump she'd found? If I can do that, I've at least done something.

I choose this walk because Avon provides funding for women who can't afford treatments. I've talked before about how earth-shatteringly lucky I am to have the insurance I do. To have friends who've told me to go ahead with treatments and I can pay them back later (an offer I haven't yet had to take). Not everyone is so lucky, and Avon helps bridge that gap. Avon also funds life-saving research, and you know how I feel about research. You can read more about their mission by clicking here.

Next spring, I'll be flying back to my old stomping grounds -- Washington, DC -- to walk with a team of women, old friends and new from all over the country, to raise money for this organization that has done so much for people facing this vile disease. While I'm there, I'm hoping I can brush up on my lobbying skills and take my message -- that this can and does happen to young people, that we need more research funding -- to Congress (starting with my state representatives, but to anyone who will listen, really).

Do you want to join us? Support our team with a donation? Make signs to cheer us along as we wind our way through the halls of Congress? We welcome the support. I appreciate it more than I can express.

This will be my 4th Avon Walk, and to date, I've raised more than $30,000 for the cause. Last year alone, our team was able to donate more than $16,000. We're hoping to blow that number out of the water this spring. If you'd like to help us do that, please click here. And thank you. It means the world to me.

Thirty-Nine Point Three

As you may or may not know, I'm walking in my third Avon Walk for Breast Cancer in San Francisco this July. It is a grueling and exhilarating two-day, thirty-nine-point-three-mile walk through the city, across the Golden Gate Bridge, and up the hills of Marin County (seriously, they never seem to go down).

{photo credit}

When I did my first Avon walk in Santa Barbara in 2012, I was about halfway through six months of high-dose, intense, ugly ugly ugly chemo. I signed up for that walk at the last minute, giving myself just over five weeks to train and raise the $1,800 minimum. I was shocked as the donations poured in and topped out at more than $12,000. Avon took notice and asked me to be the survivor speaker at the closing ceremony that year. I even got to meet Fergie (that's me in the stranglehold in the lower left photo).

I signed up for walk number two almost as soon as I limped across the finish line that year. Last September, I walked San Francisco with eight friends and family. I'd been on my current drug Kadcyla for four months then; I'd just received news it was working, but there were still signs of cancer. I was once again a top ten individual fundraiser, and I vowed I'd keep walking and raising money and awareness for as long as I'm able. I am so lucky I'm still able.

Every year, I have this little seed of hesitation at the back of my mind, wondering whether I should sign up again, whether I'll be around in twelve months or healthy enough to walk. And then I say, "Fuck it," and sign up again, optimistic and hopeful and willing myself to keep doing this year after year, mile after mile, lost toenail after lost toenail.

I walk because I can. Because I believe we are on the precipice of monumental medical innovations and breakthroughs, and I want to do every little thing in my power to help drive that forward. Because Avon gives back to local communities to help under-served women get access to healthcare, gives to charities that support people as they're going through chemo (and I know firsthand how life-changing that is, to have someone else bring your family a meal when you're too sick to manage it), and funds cutting edge research -- the type that is bringing me smart-bomb medicine and ever-so-slowly shifting the tide in our collective fight against cancer.

If you'd like to contribute, you can visit our team page here: Team Booby and the Beast. Every dollar helps. Thank you for your kindness, your unwavering support of me and my family over the years (years!), and for walking with me -- in person and in spirit.

Next year, I'm setting my sights on Washington, DC. Who's with me?

October 13th

In case you missed it, October 13th (yesterday) was National Metastatic Breast Cancer Awareness Day. I thought about doing a post on the reasons this day is so important for women like me with metastatic disease, but instead I got bogged down in watching terrible local news coverage of the Komen Race for the Cure here in Phoenix, which focused so much on victory over cancer and the racers' fun costumes that I wanted to scream.

I'm becoming an old curmudgeon well before my time.

* Full disclosure, I've done the Komen race, and it makes me just as uncomfortable in person.

As far as I noticed, there wasn't a single mention of advanced disease--or even the possibility of it--in the Komen coverage. Yes, early detection increases the odds you'll beat breast cancer, but it's still no guarantee that mets won't show up later. In fact, 20-30% of everyone diagnosed with breast cancer will at some point down the road develop metastases. It may even be after the magical 5-year mark.

Sound too crazy to be true? Read more about the facts here.

At some point, we need to stop the madness of packaging this disease in pretty pink ribbons and talk about what's really happening: approximately every 15 minutes a woman dies in this country because of breast cancer. All of those deaths? From metastatic disease--like mine. And the numbers haven't changed much in the last 30 years, despite more hype, more awareness, more pink.

I guess I am writing a post about why Metastatic Breast Cancer Awareness Day is so important. But as my friend Nancy puts it--really, just one day?

And I've griped about the pinkification of October before, but in case you need more reasons to be grumpy on a Monday, here are some interesting articles I've come across recently.

- Why I almost can't turn on the t.v. on Sundays anymore.

- Apparently this also happened yesterday?

- This blogger's reaction pretty much sums it up perfectly.

- And if you think bras are uncomfortable, try blind consumerism.

- Finally, a controversial argument by one of breast cancer's most ardent researchers and fighters that all cancer is metastatic.

If I can please implore you, if you're going to give, please donate to breast cancer charities that fund research, not awareness. We are literally dying for it.

Want a few suggestions? My friend Carolyn put together a list, below, and of course I also support the efforts of the Avon Foundation because they put real dollars toward research and have never shied away from the realities of this disease.

Here are some organizations where you may consider donating a few dollars; all receive "A" ratings for using most of their profits towards funding research and support rather than fundraising.... Breast Cancer Research Foundation, National Breast Cancer Coalition Fund, Living Beyond Breast Cancer, Young Survival Coalition, or Breast Cancer.org.

One final, less grouchy, note: if you're going to be aware, be aware of your own body. Any changes that don't seem right to you? Get them checked out, and press your doctors to take you seriously. Breast cancer in younger women tends to be far more aggressive than the disease that strikes women who are post-menopausal.

My primary tumor was literally the size of a walnut under my skin, and my doctors were still insisting it was mastitis. So I switched doctors. And then a week later, my new doctor was calling to tell me it had already spread to my lungs, my lymph nodes, and my spleen.