Hoping for the Two Percent

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

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

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

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

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

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

But also, what do most people really know?

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

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

*& %!)%#@!

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

***

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

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

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

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

Why are we over awareness?

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

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

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

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

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

Around the Web: End of Summer Edition

Kids are back in school everywhere, it seems, based on all of the adorable Facebook posts of your kids holding signs about what grade they're entering. This is one of my favorite times of year on social media. Pumpkin patch season is next up, I think.

Anyway, here's my husband (a professor) with his take on the meme (and yes, this is how he typically dresses for work).

It's true: save for this weekend, summer's just about over (even if our thermostat begs to differ). And I owe you all some news. So here's the research I found around the web over the last couple of months. I wasn't just eating bonbons by the pool, you guys. Who am I kidding? I wasn't doing that at all, but a girl can dream.

Scientists Turn Cancer Cells Back to Normal, Could "Switch Off" Disease

WELL, THIS WOULD BE AMAZING. Clinical trials stat, please.

"For the first time, aggressive breast, lung and bladder cancer cells have been turned back into harmless benign cells by restoring the function which prevents them from multiplying excessively and forming dangerous growths.

Scientists at the Mayo Clinic in Florida in the U.S. said it was like applying the brakes to a speeding car.

So far it has only been tested on human cells in the lab, but the researchers are hopeful that the technique could one day be used to target tumours so that cancer could be “switched off” without the need for harsh chemotherapy or surgery."

No Surprise Here: Cancer Drugs Are Freaking Expensive

"[The report] goes on to matter-of-factly lay out the harsh financial realities many people face after a cancer diagnosis, a suite of diseases that will affect 1 in 3 individuals over their lifetime. While the cost of new drugs has soared to well over $100,000 a year, the out-of-pocket expenses patients are expected to bear have also gone up to 20 to 30 percent. Because of these costs, about 10% to 20% of patients with cancer do not take the prescribed treatment or compromise it."

So Here's to Generic Drugs!

"There's new evidence that two inexpensive generic drugs can improve survival rates for women who develop breast cancer after menopause.

In two large studies published Friday in The Lancet, a class of hormone-therapy drugs called aromatase inhibitors and bone-preserving drugs called bisphosphonates improved survival and recurrence rates in postmenopausal women with early breast cancer."

As if You Needed It: Another Reason to Quit Smoking

But none of my readers still smoke, right? 

"Among more than 800 women with breast cancer, those who had smoked for more than two decades had at least triple the odds of dying of any cause, or from breast cancer in particular, compared with women who never used cigarettes."

A "Glimmer of Hope" for Triple-Negative Breast Cancer Patients

"Using mouse models of triple-negative breast cancer, the team reduced expression of IL13RA2 in cancer cells. They found that lowering IL13RA2 was associated with much slower tumor growth, and the cancer cells were much less likely to spread to the lungs.
Based on their findings, Thiagalingam and colleagues believe IL13RA2 plays a role in the growth and spread of triple-negative breast cancer, suggesting the molecule may be an important drug target for the disease. Thiagalingam adds:

"This discovery offers a glimmer of hope for patients stricken with BLBC. Personalized cancer therapies could be developed by targeting breast cancer cells that express copious levels of IL13RA2."

What is more, the researchers say their findings could lead to treatment strategies for other forms of cancer involving high IL13RA2 expression, such as ovarian, brain, colon and pancreatic cancers."

And More Options for Her-2+ Patients (Like Myself)

"Treatment-refractory HER2-positive metastatic breast cancers are becoming increasingly rare due to the recent advent of multitargeted HER2 receptor blockade mechanisms that utilize novel antibodies and antibody–drug conjugates even as the roster of new therapies under study for this patient population continues to expand, according to Mohammed Jahanzeb, MD.

“The landscape is really shifting,” said Jahanzeb, a breast and lung cancer expert.

Jahanzeb said many novel agents including antibody–drug conjugates, bispecific antibodies, and immunotherapies are being evaluated for patients with recurrent disease at a time when outcomes are improving. “The field is very rich,” he said. “Actually, what is not so rich is access to these patients [for clinical trials]. Luckily for them, fewer are relapsing.”"

Further Evidence that Our Immune Systems Have a Role to Play in Fighting Cancer

"A cancer patient's chances of survival seem to depend partly on activity in specific genes and immune system cells, a new study suggests.

Using data from nearly 18,000 people who were treated for cancer, scientists found that particular patterns of gene activity corresponded to patients' survival odds -- across a whole range of cancers, including brain, breast, colon and lung cancers."

Another Novel Approach? Overstimulate Certain Cancer Cells to Kill Them

This is not yet available in a clinical setting, but researchers are optimistic.

"A drug candidate that overstimulates proteins crucial for tumor growth shows promise as a new strategy to treat a wide range of cancers. The demands of rapid cell division put a strain on cancer cells, and the approach works by tipping cell stress over the edge. In the August 10 issue of Cancer Cell, American researchers show that the drug candidate inhibits tumor growth in a mouse model of breast cancer and efficiently kills a broad range of human cancer cells.

"No prior drug has been previously developed or proposed that actually stimulates an oncogene to promote therapy," says co-senior study author David Lonard of Baylor College of Medicine. "Our prototype drug works in multiple types of cancers and encourages us that this could be a more general addition to the cancer drug arsenal.""

Blood Test Could Predict Breast Cancer's Return

I'm not sure if I'd want this, for the same reasons I won't go see a psychic. Would you get the test?

"An experimental blood test may be able to predict whether a woman with breast cancer will suffer a relapse months before new tumors would be detectable on scans, researchers said Wednesday.

The technology, described in the journal Science Translational Medicine, works by detecting cancer DNA that circulates in the bloodstream.

While the test is not yet available to the public, and likely will not be for years to come, researchers are hopeful that it could help refine personalized treatments for cancer and perhaps lead scientists further down the path of finding a cure one day.

"We have shown how a simple blood test has the potential to accurately predict which patients will relapse from breast cancer, much earlier than we can currently," said study author Nicholas Turner, team leader in molecular oncology at The Institute of Cancer Research, London."

Around the Web: Sore & Bruised Edition

I'm pretty sure I gave myself whiplash last weekend when I tripped on the laces of my sandals during an aggressive game of duck-duck-goose. One minute I was the "goose" chasing Quinn, the next I was smacking the cement with such force and velocity that my sunglasses went flying, I scraped most the skin off my right elbow, and all of my pride went floating away like a lost balloon.

Remember? I told you I'm a bit of a klutz.

I woke up on Monday with a headache and a sore neck, both of which have gotten better as the week goes on. My elbow too. That hasn't stopped me from wondering if I have brain mets due to the headaches or bone mets due to how sore my elbow is. 

Hey, I never said cancer made me more rational. 

Speaking of sore, I've started a new exercise routine, although calling it a routine is a bit of a stretch since I've only gone four times in two weeks. I'm started doing Pilates with a couple of girlfriends after one of them roped the other two of us in like cattle about to be slaughtered.

My texts with my other new-to-Pilates friend have gone a bit like this over the last 24 hours: 

Me: My calves are burning!!!!

My friend: I mean, my calves hurt so bad that if I stay stagnant for too long, the second I get up, I almost crumble.

Me: Every time I go to stand up, my legs seize up. I might sleep on the couch just so I don’t have to move again.

My friend: OMG...I know. I just walked from the couch to the desk (and you know how short of a distance that is) and about fell over.

Here's the deal, though. I figure if I exercise enough that I'm always sore somewhere, it somehow makes the pain less likely to be from cancer. Or takes my mind off of cancer (a little, anyway).

And speaking of cancer, here's why you're here, the things I saw in the world of research around the web this week.

***

Do Patient Navigators Actually Help?

What do you think? Have you used services like this? Would you? I haven't, but then I kind of have because I have my husband Chris, who is basically my extra set of eyes and ears and most definitely my extra memory. 

Also, this: 

"In the end, many say, debating patient navigation may be asking the wrong question. Why not, they wonder, spend the money and energy needed to overhaul the entire cancer-treatment system?

“One question worth asking is why do [patient navigators] exist,” Ramsey said. “And the reason is the cancer community has done a very poor job of helping patients through the system. The fact that navigation exists is kind of an indictment of the cancer-care system.”'

Why BRCA Genes Eventually Resist Cancer Treatment

"Now, scientists at Yale School of Medicine in New Haven, CT, have pinpointed a key molecule called co-factor DSS1 that helps the BRCA2 gene to repair DNA.

They note how "DSS1 acts as a DNA mimic," and without it, BRCA2 mutations cannot do their job of repairing DNA - which is key to the survival of cancer cells.

The team says the findings point to a possible way to decrease drug resistance in cancers involving BRCA genes.

Senior author Patrick Sung, a professor of molecular biophysics and biochemistry, suggests drugs that interfere with DSS1 function could be developed and used with existing drugs to overcome this resistance."

A Clue About Why Brain Metastases Occur, And One Possibility for Stopping Them

This is at a way early stage (mouse models), but looks promising. 

"Removing a single protein from the blood could stop breast cancer spreading to other part of the body, scientists have discovered.

They identified a key molecule, which triggers the growth of blood vessels in tumours that have spread to the brain - a common secondary site for breast cancer to spread.

By withholding the protein, called DOCK4, a particular part of the blood vessel did not form as quickly, meaning tumours grew at a slower rate, scientists found.

Dr Georgia Mavria, from the University of Leeds, said the discovery could help develop new drugs and identify people at risk of their breast cancer spreading."

How Many Studies Like This Do We Need?

"The increased use of mammograms to screen for breast cancer has subjected more women to invasive medical treatments but has not saved lives, a new study says.

After reviewing cancer registry records from 547 counties across the United States, researchers concluded that the screening tests aren’t working as hoped. Instead of preventing deaths by uncovering breast tumors at an early, more curable stage, screening mammograms have mainly found small tumors that would have been harmless if left alone."

It's also very much worth reading this piece by the always-insightful Elaine Schattner, who writes, in part: 

"But mainly I’m concerned about the author’s definition of overdiagnosis, and their conclusion. In the paper’s second paragraph they write: “However, there are increasing concerns that screening unintentionally leads to overdiagnosis by identifying small, indolent, or regressive breast tumors that would not otherwise become clinically apparent.”

Yes, there are fast and slow breast tumors; pathology varies. As I will discuss in a post forthcoming, knowing the details of breast cancer should enable women and their doctors to avoid overtreatment, which is a real phenomenon and can be separated from overdiagnosis.

But regressive breast cancers?"

Exactly.

Adding Progesterone to "Double Positive" Patients' Protocols Could Increase Survival

"It turns out that when progesterone sticks to the progesterone receptor in cancer cells, it alters how the oestrogen receptor works, and effectively puts a second brake on tumour growth. Tests showed that mice given progesterone and tamoxifen had breast tumours only half the size of those given the drug on its own.

“Crucially, it provides a strong case for a clinical trial to investigate the potential benefit of adding progesterone to drugs that target the oestrogen receptor, which could improve treatment for the majority of hormone-driven breast cancers,” Carroll added. Details of the study are reported in Nature."

Around the Web: AstraZeneca Edition

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

Deep in thought about oncology topics

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

You can read more about the AZ summit here.

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

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

Touring the Phase I Oncology Lab at MedImmune

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

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

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

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

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

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

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

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

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

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

THIS is Why We Walked and Lobbied All Over Capitol Hill

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

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

Huge Implications for the Future of Treating Genetic Cancers

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

Why Nearly EVERYONE is Excited about Immunotherapy

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

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

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

An Illustration of How Immunotherapy Works

Around the Web: Like Clockwork

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

{photo credit}

It's like clockwork over here.

Except it isn't.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

At Long Last, Answering Some Questions about 'Exceptional Responders'

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else. 

Last Week it Was the Bones, This Week the Lungs?

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

Will the Breast Cancer Test Kit be Next to the Pregnancy Tests at the Drugstore?

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

A Case of Two Steps Forward, One Step Back (Or Sideways...)

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Finding Relief from Post-Mastectomy Pain

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

My goal {photo credit}

"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

I Might Have to Ask My Doctor About A Daily Aspirin Regimen

He can't order any tests based on a question about aspirin, can he? 

"A daily dose of aspirin may be effective at blocking breast tumour growth, Indian-origin researchers have claimed.

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

And How Law School May Have Led to My Cancer Diagnosis*

"“People really should elevate the importance of sleep to the same level they do diet and exercise to improve their overall health and well-being,” he said."

On that note, I'm going to bed. 

* Allegedly.

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.

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.”

Don't Ignore Stage Four

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

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

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

{image source}

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

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

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

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