How to Talk to Congress

I am way out of practice when it comes to trekking in heels all over the unforgiving, marble halls of Congress. When I went to DC last week, I thought I was being sensible with 2-inch pumps instead of the stilettos I wore in my twenties. I was wrong. My feet are still healing from the ensuing blisters.

Was it worth it? To the extent it meant getting in front of legislative staff for my Senators and telling them my story -- absolutely. I'm not sure if I changed any minds, but here's what I can report and some advice for talking to your own Senators, whether you can make it to DC or not. 

Here I am after meeting with Helen Heiden, legislative assistant for Sen. Jeff Flake (R-AZ). 

I'd like to think this meeting had something to do with the decision to delay the vote on Senate healthcare legislation until after the 4th. Either way, doing my part to #ProtectOurCare by telling my story to staff of @jeffflake

A post shared by Jen Campisano (@jencampisano) on Jun 27, 2017 at 11:00am PDT

I realize I look slightly annoyed. Some of that may have been my sore feet, but it's also the fact that Senator Flake has not said one way or another how he'll vote on the proposed replacement bill for the Affordable Care Act. This legislation, called the Better Care Reconciliation Act (BCRA for short), will gut Medicaid spending by nearly $800 BILLION, allow states to opt out of the requirement that insurance companies include essential health benefits (EHBs) in their plans, and give massive tax cuts to the wealthiest people in this country. It is hardly a healthcare bill.

For Arizona alone, the proposed legislation would cost more than $7 billion over the next ten years. More than 400,000 Arizonans would lose coverage. We are a state that expanded Medicaid services under the Affordable Care Act, and it has been a success story. As Sen. McCain's staffer put it to me, "We don't want Medicaid to change in Arizona! Enrollment is up, and costs are down. It's exactly what we want to see." Even our governor, Republican Doug Ducey, has spoken out against the current draft of the Senate legislation.

Over this July 4th recess period, new proposals to amend the BCRA have emerged, including an amendment by Texas Senator Ted Cruz that would strip the few remaining protections for those of us with pre-existing conditions. This proposal makes the legislation even worse for the estimated 16 million cancer survivors in this country, not to mention all of the people with other conditions -- such as diabetes, asthma, high blood pressure, anxiety, and the like -- who would no longer be eligible for affordable care. The Cruz Amendment sounds dreadful, but has been hailed by a few more conservative senators as a requirement for moving this legislation forward.

So what can you do to help stop this? How can you talk to your Senators about this legislation?

• Call. I have my own senators' DC and local numbers programmed into my phone, and make a point to call and talk to a staffer every day. You can also call 844-257-6227 to be connected to the senators in your state.
• Write letters. 
• In any case: identify yourself as a constituent. Be polite, be brief, but make sure to share your personal story about why gutting Medicaid, or defunding Planned Parenthood, or stripping protections for pre-existing conditions or essential health benefits is bad for you and your family.
• If you can't think of how this affects you personally, feel free to share my story. Or my friend Danya's, who also lives here in Phoenix. 

After my meeting with McCain's staffer last week, I pressed the button for the elevator, and out walked Senator McCain himself. I introduced myself, and said I was in town from Phoenix to talk to his staff about my experience as a cancer survivor. "I'm one, too," he responded as he shook my hand. "I know, sir," I said, then explained to him that I hoped he'd continue doing what's best for Arizona and voting against legislation that's not good for cancer survivors or our state.

And if your senators are opposed to this legislation? Please still call them and share your stories. They need to hear appreciation for their stances, and need to know why this matters so very much.

Cancer Advocacy Update

My friend Beth has been denied the chemotherapy drugs her doctor is recommending she get to treat her metastatic breast cancer. Her insurance company, +Blue Cross and Blue Shield Service Benefit Plan doesn't think she should have them. They did a cost-benefit analysis, apparently, and decided Beth's life wasn't worth it. I think that about sums it up.

I am angry, and you should be too.

***

Photo by Stan Mouser

I flew to DC last week and spent all day Thursday at a policy roundtable to discuss the future of cancer policy post-election. What happens to the Patient Protection and Affordable Care Act (ACA/Obamacare)? Will Vice President Biden's Cancer Moonshot still get funded? Is Paul Ryan going to be successful in privatizing Medicare? Will the Medicaid expansion go away?

Mostly, I listened, because there were some serious wonks on those panels, women and men who've spent their entire careers focused on healthcare policy and how to improve the system. I also asked a few questions. 

Deep into a discussion on "high-risk pools" and the need to draw in "young immortals" to decrease overall insurance costs, I raised my hand. 

"Hi. I was one of those 'young immortals' until I was diagnosed with metastatic breast cancer at age 32. Metastatic cancer in young people is on the rise, but people are also living longer with cancer. Cancer is expensive. What about lifetime and annual limits, which are currently prohibited under the Affordable Care Act?"

To which the response was, essentially, "Your life matters. I'm sorry for your experience. But trade-offs will have to be made."

Trade-offs. This is what we're up against, folks.

***

Here is what I learned, although nearly every speaker admitted we are all trying to read tea leaves at this point. No one really knows what a Trump administration is going to look like, but we do know that the Republican Congress of the last several years has voted to repeal the ACA more than 60 times. 

One panelist likened it to a dog who finally caught the car. The question is what does the dog do now? 

1. Repeal and replace was just a campaign slogan. The general consensus was there is not currently any republican agreement on what to replace the ACA with. So there will be efforts to repeal, possibly with a phasing in of something else down the road. There are legislative tricks up those republican sleeves, including a way to repeal without the requisite sixty-vote majority typically needed in the Senate. Get poised to hear budget reconciliation a lot. And if you don't currently have insurance coverage and think you might want it, APPLY FOR COVERAGE NOW. Keep current on your payments. Those with existing coverage may be grandfathered in to new legislation, if and when new legislation is introduced.
2. Medicare (and Medicaid) as we know it is at risk. Speaker of the House Paul Ryan has repeatedly made it clear he wants to overhaul Medicare (likely to privatize it, similar to what happened with our prison system. That didn't work out so well.) Another panelist said she'd be shocked if this happens in the same year as a repeal of Obamacare, but it's still at risk. While many panelists cautioned that republicans gut Medicare -- and potentially alienate the AARP crowd -- at their peril, Paul Ryan and company seem determined to move on this one. And if the ACA is repealed, so goes the Medicaid expansion. 
3. Cancer Moonshot funding is a concern. Congressional appropriations for fiscal year 2017 are at a stand-still because of the election (with another continuing resolution expected before December 9th), and didn't include specific funding for the moonshot anyway. At least one advocacy organization is urging its followers to reach out to Congress and demand a vote on NIH funding this year, rather than flatline the funding at 2016 levels. Another opportunity for funding the moonshot is the 21st Century Cures Act, which increases funds in exchange for decreasing regulations at the FDA. But prospects for that legislation during this lame-duck session are murky. I feel like I'm giving you answers straight out of a Magic 8 Ball: reply hazy try again. 
4. Speaking of the Moonshot, MATCH Trials have begun. These clinical trials aim to analyze patients' tumors for genetic abnormalities for which we already have targeted therapies. We might have data from these trials in as soon as one year. The current acting director of the National Cancer Institutes is planning on staying on in this administration as long as possible. Typically, it takes new presidents about a year to replace these appointees.
5. Advocacy is more important than ever. Every speaker mentioned it. We need to tell our stories and show that we are more than just a cost in the cost-benefit analyses that Congress and insurance companies are doing. We need to talk about why the Affordable Care Act is important (protections against prohibiting coverage for pre-existing conditions and bans on annual and lifetime coverage limits are my two gems). Is the ACA important to you? TELL YOUR STORY HERE. And write, email, or tweet Congress to tell them your concerns. 

***

After a full day of policy information that was admittedly bleak, I went with a representative from MetaVivor to meet a friend on Capitol Hill. We talked about how her office can help us in the cancer community. We have allies on the Hill who understand how expensive treatment is, who know women (and men) are dying by the hundreds every day, and who want to keep the protections that have been in place for several years now. They (and I) also understand the current system isn't perfect, but we don't believe the answer is cutting off protections and coverage for millions of people. 

People like my friend Beth cannot afford gaps in insurance, let alone insurance that isn't working for them and denying treatments. Another friend told me she would stop treatment rather than bankrupt her family, if she lost her access to Medicare. My friends are having to think about making the choice to die or pay their bills.

We have work to do.

What Can We Do Now?

Well, that didn't go as I had hoped. I am still troubled by Republican plans to gut the Affordable Care Act, phase out Medicare, and -- in all likelihood -- reduce spending on cancer research. But those are not my only concerns, not by a long shot.

Maybe I should give you some background on me. 

I think I mentioned way back at the beginning of this blog that I grew up an Army brat. I can't find the reference, but trust me on this. It happened. My family moved, on average, every two years. 

I went to three different high schools, two of which were majority minority. Having lived on military bases -- which were very racially diverse, maybe still are -- until late in middle school, I didn't think much of it. I took that diversity for granted.

Here's a page from my yearbook in 1995, the second high school I attended. Don't ask me what I was thinking with that hair. But you see the faces of my classmates? This is the bubble I grew up in. We also had the benefit of not much socioeconomic adversity, since most of our parents were in the military. 

Growing up, I took acceptance of our differences for granted. For years, I naively assumed that racism was pretty much gone in this country because I didn't see much of it in my early life. I lived in Korea and Alabama twice and Florida -- and because us kids were mostly getting along (except for that tiff between the Puerto Rican students and Mexican students at my high school in Orlando that one time), I wrongly assumed adults were mostly okay with each other, too.

Even as I witnessed with horror the killing of Trayvon Martin, Terence Crutcher, and SO MANY others, it didn't dawn on me that racism was still prevalent enough in this country to elect Donald Trump. I still held out hope that we would collectively stand up against an openly racist and inflammatory candidate. 

I'm not sure that military diversity bubble was the most productive for my worldview, since it meant that I was surprised and gutted by this year's election. I am heartened only by the fact that more of the electorate voted for kindness and inclusion, but that doesn't change the outcome.

I was blind, but now I see. 

I still don't understand or begin to make excuses for the 53% of white women who voted for Trump. If you are one of them, can you please explain your decision to me in a way that doesn't belittle Hillary? I can wholly understand how reasonable people could not like Hillary's policies, but to choose a man who would "grab 'em by the pu**y" to represent women's interests? Our daughters'? Did you hate Hillary that much? Can you not see past the end of your noses? Are you -- my neighbors -- really supremacists? I'm trying to understand, and I just don't.

So what now? What can we do to keep hope alive in this country? SNL this week helped. If you're one of the few people who haven't seen it yet, Kate McKinnon's rendition of Leonard Cohen's iconic song is beautiful: 

"I'm not giving up, and neither should you."

And A Tribe Called Quest has always been one of my favorites.



In that vein, I'd like to point you to a few women- and minority-run businesses that are doing good things, mostly in the breast cancer space, but not exclusively. (Note: I don't know how all of these people voted, but their work is impressive enough for me to put it here.)

1. The Brobe by Allison Schickel: I wished I'd had one of these when I had my bilateral mastectomy nearly five years ago. The material is incredible, it has a built-in bra and internal pockets for drains. I do have one to give away. If you're interested, please leave a comment and I'll send it your way. It's black, size large, and comes with some jewelry from...

2. Kendra Scott, who donated $100,000 to...

3. MetaVivor.org, which is committed to funding metastatic cancer research.

4. HealinComfort by Cherie Mathews: similar to the Brobe, above, but meant to be worn out of the house, too. I think I used safety pins to keep my drainage bags hooked to the inside of my zip-up sweatshirt. But I had Chris to help me with fastenings, and this shirt would have been so much easier.

5. Tigerlily Foundation: helping young and underserved women get through cancer.

6. Shay Sharpe's Pink Wishes: granting wishes to terminal breast cancer patients.

7. PAL Experiences: opening up new worlds for children living with autism.

8. Kerry Burki: a catalyst for positive change in our world.

9. Lara Agnew: my talented friend who reveals the beauty in our world.

10. Farmyard: local CSA serving Phoenix

11. AnaOno Intimates: beautiful lingerie by and for breast cancer survivors.

12. HulaBelle Swimwear: bathing suits for women who've had breast cancer.

13. Cat & Owl Co.: fun games to play with your young children that also teach them math concepts. Quinn LOVES these games.

14. Brim Papery: cards, mugs, and paper products that make great gifts.

15. Emily McDowell Studio: best known in my circles for the "Please let me be the first to punch the next person who tells you everything happens for a reason" card.

Also, here is a list of organizations that need our help right now.

This week, my family and I have also donated to Planned Parenthood, contributed to the ACLU, and I'm going to find ways to give back to my community, here in still red Arizona, that don't simply involve writing a check or canvassing in neighborhoods that apparently turned out to vote for Hillary in much larger numbers than my own. What will you do?

Flashback Friday

Twenty years ago, in August of 1996, I was a 17-year-old girl about to start college. I had just flown across the country from Seattle to Baltimore, Maryland, by myself. My parents and I had said our tearful good-byes at the gate at SeaTac (back when you could still walk people to their gates at airports). I'd get picked up at BWI by upperclassmen on the welcoming committee. There were about four of us who rode nervously in the university-issued van to campus, our new home.

I moved into an un-air-conditioned, stifling dorm room at Johns Hopkins University, all of my worldly possessions in a large suitcase, plus a box or two I'd receive from home in the next couple of weeks. I had my rolls of quarters for laundry and phone calls home, my shower tote for carting my toiletries to and from the shared bathroom, and the weird extra-long twin sheets made specifically to fit those narrow dorm room beds. I just needed to go buy a box fan to deal with those last few weeks of swampy mid-Atlantic summer.

That first week is kind of a blur of freshman orientation activities like figuring out who has your same area code, if anyone, and things like finding the financial aid office for a check so I could buy books. And then I started a work-study job at the campus bookstore, so I got to see what classes everyone else was taking, too. The bookstore was mercifully air-conditioned, and in a basement, so I was happy to spend time there, even if I was only making $5.25 an hour.

At some formal my freshman year. LOOK HOW YOUNG!

***
Fifteen years ago, I was a college graduate living on Capitol Hill in Washington, DC, and working as a lobbyist. It was late summer 2001.

I was also training for my first marathon. My marathon training team would meet early on Saturday mornings to run along the historic C&O canal path past Georgetown, into the shaded woods in Maryland, through old tunnels, for miles and miles. It was muggy, but the conversation was good and the cause was worthy. I had joined the AIDS Marathon Training Program to raise money for DC's Whitman Walker Clinic, at the time the largest service provider for AIDS patients in the District. My marathon would be at the end of October in Dublin, Ireland.

Prior to security barricades and guards everywhere, ca. 2001

Then September 11th happened. I was at a client office in Northern Virginia that brisk, beautiful morning, listening to a presentation on systems security when everyone's phones and Blackberries started buzzing. How rude, I thought. But then the whispers made their way to the podium and the speaker stopped speaking. "A plane hit the World Trade Center," a colleague said to me, quietly. I had been in the World Trade Center the weekend before. We all gathered around a TV in the conference room to watch the news coverage, wondering what the hell had just happened in New York. It looked like footage out of a movie. This can't possibly be real, I remember thinking. And then the Pentagon was hit. 9:37 a.m. It suddenly became crystal clear we were under attack.

I was able to reach my boss, who said they were closing the city. She asked whether I had a place to stay. I called a college friend who lived in Gaithersburg, Maryland, outside the beltway. I could crash with her until the city opened again and I could get back to my apartment. We drank cheap wine and cried about the new world we were living in.

Two days later was my twenty-third birthday. I didn't much feel like celebrating.

But I did get on a mostly empty plane the next month and I ran that marathon in Ireland.

Proof.

***
Ten years ago, I was just returning from studying abroad in South America. I had finished my first year of law school and had taken the opportunity to spend six weeks in Santiago, Chile (where I spent much of the time sick with what was probably a bronchial infection) and Buenos Aires (where, recovered from my mystery illness, I ate my weight in grass-fed beef and red wine).

Chris and I had been dating about a year by then. Our schedules were equally crazy. I'd taken leave from work to go to South America, but was back at my job and school that August. He was frantically trying to finish his dissertation and typing away in his office at the Smithsonian most nights until the last bus came by, sometime around 1:30 in the morning. We saw each other on the weekends, where we'd rehash our weeks over runs through the zoo or beers in Adams Morgan. Or both, if we were feeling ambitious.

I was exhausted, but who cares when you're twenty-seven and in love?

In 2008, I graduated law school, followed Chris to Arizona, took and passed the bar here, and planned our wedding. We got married that fall, so broke it felt like we were in college again, but we had each other. And at least one of us (not me) had a job.

***
A little more than five years ago, Quinn was born. I'd settled into a job with a great team, Chris and I had purchased our first home (a tiny thing built in the 1950s), and Arizona was even growing on me. Life was so good.

Then on August 19, 2011, I went in for an exam with a breast surgeon who asked me to go to radiology right away. I still remember what I was wearing, a cute belted smock, navy with white flowers. I later threw it away. The radiologist took one look at my ultrasound pictures and told me she was 99% sure this was cancer.

Time seems to stand still at moments like this. I'll never forget where I was for 9/11, or what it felt like those first few days away from home at college. I'll always remember the prickly tentacles of fear that crept up the back of my neck when I was told I had cancer that Friday afternoon five years ago.

I wouldn't learn until later how aggressive or extensive it was, but I knew my lump was large. I'd thought it was an infection from breast-feeding. I was shattered to learn how wrong I was.

Five years later, I'm still here. A woman in my workout class this morning said, "Oh, congratulations! Five years is when your risk for recurrence goes way, way down, isn't it?" She was so excited, I hated to burst her bubble. But I chose honesty.

"No, it's just when they stop tracking us," I said.

She looked crestfallen. "Oh," she said.

"But it still feels like a milestone," I added, throwing her a bone. But also because it's true. It does feel like a milestone some days, like a rock in my throat on others.

Quinn is finishing his second week of kindergarten today. Chris just started teaching a new semester at ASU. I don't often know how to celebrate this day, or whether it's appropriate for a cancerversary. I mean, it was a terrible day of our lives, but then, look how far we've come. A lot of times I give the day a moment of silence and move on, but I think five years deserves something. Ice cream and a movie is sounding spot-on.

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.

Lobby Day 2015

It's not every day you get to sit down with one of your state's Senators and watch as his shiny happy demeanor suddenly shifts -- his jaw visibly drops -- as you tell him your story about being diagnosed with metastatic breast cancer at the age of 32, as you tell him you'd like to see an end to breast cancer so you can watch your son grow up. It's not every day you get an audience with that much influence.

But that's exactly what happened on Tuesday, as I logged another 4.5 miles walking all over Capitol Hill in Washington, D.C., advocating on behalf of the National Breast Cancer Coalition, yes, but also on behalf of myself and all of us living with a diagnosis of metastatic breast cancer. After all, NBCC's goal of seeing an end to breast cancer is the same as mine. It is all of ours. And what were a few extra blisters in the name of ending this disease? My feet this week are getting their own post. Stay tuned for that.

I don't know exactly which of the seven offices we visited from the Arizona delegation will support our legislative requests, which included signing on to the Accelerating the End of Breast Cancer Act (H.R. 1197 / S. 746) and maintaining current funding levels for the Department of Defense's Breast Cancer Research Program, neither of which should be partisan issues, but you just never know in DC.

The Act creates a commission to take a look at the various research efforts happening around the country and recommend a way to fast-track those that are most promising while reducing duplicative efforts. It would be a finite commission, ending in 2020. It would require no congressional funding. It seems like it would be an easy ask, but amazingly, it has struggled to get signed into law.

The DoD program provides grants to people like this innovator here in Arizona, who is working on a breast cancer vaccine, among other things. Think about that for a minute. Can you imagine a world in which no one has to worry about developing breast cancer? In which generations to come might only know breast cancer as a disease their grandparents had to contend with? The idea gives me goosebumps.

We asked our delegation to co-sign the legislation before Mother's Day, as a gift to moms (and their kids) everywhere. We've already gotten notice that a few offices want to cosponsor and will be doing so today. I hope our advocacy efforts pay off and this legislation gets signed into law. I hope this commission gets formed. I really hope we see an end to this disease in my lifetime. Now that would make these blisters worth it.

Around the Web: Overdue Edition

Every few weeks, Quinn and I go to the Scottsdale Public Library, which has a superb children's section. There are painted moats on the floor and real castle walls and a drawbridge that leads the way into a reading nook. There are legos for building, a giant stuffed dragon for riding, puppets and a stage for creating stories, and age-appropriate games housed on iPad learning centers. It's a wonderful space. But still, we forget (and by "we," I mean "I") to return in time to get our books in when they're due. I end up logging into my account online and renewing our checked-out books to avoid a late fee and a 15-minute drive.

{We have always loved reading together. Sept. 2012}

Much like our beloved library books, this "Around the Web" series is long overdue for a renewal. Or at least an update, since research is (by all accounts I can find) still happening. Progress, though sometimes achingly slow, is being made.

I don't even know if you guys come here for the research I sometimes post, but I think some of you might. I also think it's important (for my own sanity, if nothing else) to take note of the advances being made on the research side of things. To laud the glimmers of hope out there. Some of them are starting to shine pretty brightly.

***

At the conference I attended in New Jersey a couple of weeks ago, I wondered if I was somewhat of an imposter being at this summit for Online Health Advocates. Was I one? Could I fill those shoes? I mentioned once or twice that I didn't feel so much like an advocate as I did a storyteller, to which a couple of other attendees told me, "Nonsense. That is how we advocate, how we connect with people, through our stories."

Stepping into the role of advocate a bit more fully, for me, means keeping up a little better with the science side of things. (As long as it's not organic chemistry.) I used to be a lobbyist, in my former life back in DC. Yes, stories are how we connect, but when you're sitting in a wonk's office you also better know a little something about the guts of your subject matter. Where is progress being made? What research is most promising? How is it being funded? How can Congress help? I'm exploring a few opportunities that I hope will help me dive even deeper into this arena, and in that vein I'll be brushing the dust off my shoulders to participate in the National Breast Cancer Coalition's annual lobby day before Congress when I'm in DC next week.

{Photo: Mike Boening Photography}

After I walk 39.3 miles.

In the meantime I'm wondering if this is the right format -- or platform even -- for these posts on the research I cull from around the web. What do you think? Keep them here? Or would you subscribe to a newsletter if I promised to keep up with it? Please let me know what you think. And for now, here's the best of what I've found over the past month. (Like I said, overdue!)

Embracing My Inner Pollyanna

via Ann Silberman

"Some cases of metastatic breast cancer are already cured, Sledge said: in the adjuvant setting, where it is micrometastatic disease but still metastatic; and with oligometastatic breast cancer, as the CALOR (Chemotherapy for Isolated Locoregional Recurrence of Breast Cancer) trial has shown recently (Aebi et al. Lancet Oncology 2014;2:156-163).

'So the question is not why can't we cure, but rather why don't we cure more?' he said."

Because Scientists are Doing Things Like This

"Investigators from Massachusetts General Hospital (MGH) and the Harvard Stem Cell Institute have developed an imageable mouse model of brain-metastatic breast cancer and shown the potential of a stem-cell-based therapy to eliminate metastatic cells from the brain and prolong survival. The study published online in the journal Brain also describes a strategy of preventing the potential negative consequences of stem cell therapy.

"Metastatic brain tumors - often from lung, breast or skin cancers - are the most commonly observed tumors within the brain and account for about 30 percent of advanced breast cancer metastases," says Khalid Shah, MS, PhD, director of the Molecular Neurotherapy and Imaging Laboratory in the MGH Departments of Radiology and Neurology, who led the study. "Our results are the first to provide insight into ways of targeting brain metastases with stem-cell-directed molecules that specifically induce the death of tumor cells and then eliminating the therapeutic stem cells.""

Scientists are SO FREAKING COOL.

A Switch to Tame Triple-Negative Breast Cancer?

"Australian researchers have found that so-called 'triple-negative breast cancers'1 are two distinct diseases that likely originate from different cell types. This helps explain why survival prospects for women with the diagnosis tend to be either very good or very bad.

The Sydney-based research team has found a gene that drives the aggressive disease, and hopes to find a way to 'switch it off'."

Promising Outcomes from Early Phase Trials for Metastatic Triple Negative BC

"The high mutation rate of triple-negative breast cancer, which can produce neoantigens that induce an immune response, makes it a candidate for cancer immunotherapy, in particular PD-L1-targeted therapies. In addition, patients with triple-negative breast cancer with high levels of tumor-infiltrating lymphocytes (TILs), have improved outcomes, Emens said."

And for Her-2+ Metastatic Breast Cancers, As Well

""We also saw responses in these women, particularly in those that were anthracycline-naïve," continued LoRusso. "Given that many of the patients had disease that had progressed following treatment with trastuzumab [Herceptin], T-DM1 [Kadcyla], and pertuzumab [Perjeta], these results are encouraging and led to the ongoing randomized, phase II HERMIONE clinical trial, which is testing whether MM-302 plus trastuzumab is more effective than chemotherapy of physician's choice plus trastuzumab for locally advanced/metastatic, HER2-positive breast cancer.

"If the results of HERMIONE are positive, MM-302 may provide another therapeutic option for women with HER2-positive breast cancer," LoRusso added."

Plus a New Signaling Pathway Discovered in Her-2+ Breast Cancer Cells

THIS: "One of the most promising ideas in cancer treatment is to apply a lesson learned in the fight against AIDS (Acquired Immune Deficiency Syndrome): simultaneously attacking a pathological process at different points of weakness can, in some cases, deal a knock-out blow. Just as the so-called AIDS "cocktail" directs multiple agents against multiple targets, so too might future anti-cancer cocktails be directed at multiple, highly specific targets in known cancer pathways."

Don't Worry, Scientists are Finding Ways to Halt Hormone-Driven Cancer, Too

"An experimental drug rapidly shrinks most tumors in a mouse model of human breast cancer, researchers report in the Proceedings of the National Academy of Sciences. When mice were treated with the experimental drug, BHPI, “the tumors immediately stopped growing and began shrinking rapidly,” said University of Illinois biochemistry professor and senior author David Shapiro. “In just 10 days, 48 out of the 52 tumors stopped growing, and most shrank 30 to 50 percent.”"

There's a Lot of Buzz About the Future of "Liquid Biopsies"

"But eventually, we’ll begin to match specific clinical outcomes, such as therapy response, with the circulating DNA that is sequenced. We’re also working on building databases that will show which cancer drugs work most effectively with which cancers at a genetic level. We’re moving forward with this research at an exciting pace; in the next five to ten years, it’s going to make a tremendous difference in how we practice medicine."

The Psychology of Living with Advanced Cancer

“We’re all terminal,” Bellizzi says. “We’re all dying with each passing day, and there’s no way to get around that. I have found that starting my day with that thought helps me change my priorities and perspective. I try to never forget to tell people I love that I love them. If I get in a fight with a family member, I make sure to fix that before I go to bed. We don’t know what’s around the corner. I think it helps us live that way by reminding ourselves that it’s not cancer but life that’s a terminal condition.”

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.