You Can't Judge a Book by Its Cover

Although I haven't seen the movie, I just finished reading / listening to Unbroken: A World War II Story of Survival, Resilience, and Redemption by Laura Hillenbrand. (Side note: did you know you can switch between the two -- reading and listening -- and Kindle/Audible will sync with one another for some books?! This isn't sponsored, just a tip that blew me away and made finishing this book infinitely easier for me because I could listen while I hiked or drove because I haven't had much time to sit lately, so I thought I'd share.) The irony is I had treatment yesterday and have hardly left the couch today.

Unbroken is an epic tale of one man's life, from boyhood rebellion to Olympic runner to airman in World War II. In the war, his plane went down in the Pacific and he was stranded at sea for more than forty-five days on a disintegrating life raft. When he was "rescued," it was by Japanese, who put him in a variety of POW camps where he survived the unthinkable for more than two years. On the back cover blurb of the book, it says: "Unbroken is an unforgettable testament to the resilience of the human mind, body, and spirit. . ." 

My reading of such an incredible tale was timely, as I headed to a conference last weekend where I met dozens of people who are a further testament to the resilience of the human mind, body, and spirit (not to compare what we've been through to what our servicemen endured in WWII, but humanity in the face of hardship can be pretty incredible). The HealtheVoices 2015 Conference brought together more than sixty health bloggers from around the country, representing various conditions for which we advocate (and for most of us, live with): cancer, HIV, diabetes, cardiovascular disease, mental illness, Crohn's/colitis, and rheumatoid arthritis.

A photo posted by Jen Campisano (@jencampisano) on Apr 18, 2015 at 7:13pm PDT

This conference was, as far as I can tell, the first of its kind. It brought dozens of voices together to explore how to collaborate across our varying ailments, think about how to raise the volume on our advocacy efforts, and -- most importantly, I think -- discover ways to more effectively serve the patients and caregivers who turn to us for support.

The summit was sponsored by Janssen Biotech, Inc. in collaboration with Everyday Health, and I should point out that Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, of course, my own. 

I spent all day Friday traveling to the NYC area, where I was greeted by Ann Silberman of Breast Cancer? But Doctor. . . I Hate Pink! I've known Ann online for a couple of years, and I'm pretty sure she's the reason I got invited to this summit, so I was especially excited to meet her in person. And as Shakespeare said, “Though she be but little, she is fierce!”

There was a cocktail reception that evening followed by a dinner program in a windowed room overlooking the Hudson River and the New York skyline. It was an effort to focus on the speakers and not the view (seen here the next morning when I got up early to walk around a bit and soak it in).

Saturday kicked off with an inspiring and entertaining keynote by Dr. Zubin Damania (aka ZDoggMD), who told us we were part of the next wave of medicine, Medicine 3.0, if you will, in which medical information would be open and available to patients, relationships between providers and patients would exist like they did in the past, but would be more of a partnership and less of a paternalistic relationship, and that we, as online advocates, would be part of making that transition happen. He spoke to us about leaving his career as a doctor at Stanford (by way of some hilarious and avant-garde videos) to help open a membership-based (like a gym!) primary care clinic in Las Vegas that goes beyond traditional medicine by offering a range of services, including yoga and counseling.

Saturday was a whirlwind of breakout sessions on a range of topics aimed at making us better at what we do, including a session on legal issues in online advocacy that almost made me nostalgic for law school.

There was a little time for catching up with other attendees between sessions and during meals, and then we broke into smaller groups for dinner Saturday night, where I had the privilege of sitting next to the inspiring Chrisa Hickey, who writes about living with a son who was diagnosed with schizophrenia when he was just eleven years young. She has taken this challenge and turned it into a loving and safe online community of parents facing similar circumstances.

Like so many bloggers I met this weekend, she has been faced with the unthinkable, picked herself (and others) up from the doldrums, and put one foot in front of the other until life was bearable again. Resilience, indeed.

After dinner, I spoke with a man who was diagnosed with Stage 4 prostate cancer more than nine years ago and told he would probably die soon. He did not. I met a marine who was about to be deployed to Afghanistan when he got the terrible news that he was HIV positive. I spoke with another young mom who is sometimes debilitated due to her rheumatoid arthritis. Not one of these people looked sick. I don't look sick, either.

Here is a photo of those of us who were attending and write about breast cancer. Four of the five of us have been told we have metastases. Three of the five of us are in remission. I don't think any of us appear ill. (From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; me; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman; and Heather Lagemann, Invasive Duct Tales.

What I learned this weekend above and beyond how to be a better advocate, if I didn't know it already, was you never know what someone else might be going through. I looked around the room and realized that if we weren't all there together, I would never expect most of these people were facing any health hardships. You just never know. The old adage is so true: you can't judge a book by its cover. Also, never underestimate the resilience of the human spirit.

Around the Web: Stomp Out BC Edition

There was a movement among the online breast cancer community yesterday to raise awareness for metastatic breast cancer, to call attention to a side of the disease that rarely gets talked about, to make some noise collectively. Stomp Out Breast Cancer Monday was the brainchild of Beth Fairchild (view her news clip here). The goal was to get the hashtags #dontignorestageiv #bckills and #metsmonday trending on Twitter, Facebook, Instagram, or wherever an impact might be felt.

I don't know about you, but my Facebook feed was filled with stories of women I have come to love, women who are facing this disease with so much grace it felt like my heart might burst reading through their experiences. One friend wrote: "The hardest part about living with metastatic breast cancer isn't the treatments. It's looking into my 9 year old's eyes and seeing the pain and fear there. Cancer is a thief that has robbed all of my kids of their innocence." 

Then last night, because Quinn took a weird late-afternoon nap that lasted until 8:30 pm, I was able to participate in the #BCSM Twitter chat that takes place on Monday nights. I got to say hi to some old friends (and new) as we talked about what we'd seen on social media that day: what resonated, what worked, what could be done differently in the future, what our ultimate goal even is. (RESEARCH DOLLARS NOW, PLEASE!!!) Then I found myself crying as we remembered friends who've passed away, and I tweeted this: 

I do not want my son to have to remember me. #bcsm
— Jennifer Campisano (@JCampisano) March 3, 2015

I am also extra emotional because Chris is FINALLY home after four weeks in Africa, because Quinn turns four this week, and because I have a scan on his birthday. It's as if, with Chris back, I can let my guard down and let all this pent up emotion out. I no longer have to run the household by myself, be a single parent (my utmost respect and awe to those of you who are always single parents), or worry as much about the bogeyman every weird noise at night.

Today was emotional, but also inspiring in so many ways. I was proud of how this community rallied to get our voices heard. I hope I can continue to be a part of that rallying cry for many, many years to come.

Here's what else I saw on the web this week.

Basket Studies a Faster Way to Try Many Drugs on Many Cancers

"She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor’s growth."

A Test to Predict Whether You'll Survive Breast Cancer?

At this point, I'm not sure I'd take such a test. Would you?

"The test uses computerised imaging of tumour samples and statistical analysis to measure the number of immune cell ‘hotspots’.

Researchers found images of hotspots where immune cells were clustered together around breast cancer cells provided a better measure of immune response than simply the numbers of immune cells within a tumour.

Scientists at The Institute of Cancer Research, London, analysed tumour samples from 245 women with ER negative tumours.

They split women with breast cancer into two groups based on the numbers of immune hotspots within their tumours. Women whose cancers had a high number of spots lived an average of 91 months before their cancer spread, compared with just 64 months for those with a low number of spots.

The test is the first objective method of measuring the strength of a patient’s immune response to their tumour."

"This is Going to Happen in Our Lifetimes"

This is long, but so worth the watch. It gave me so many goosebumps. And of course, made me cry. Seriously, by the end I was bawling. But also, so very, incredibly hopeful. 

The Squeaky Wheel (An Update)

My post on Monday garnered a lot of attention, to say the least. Combined with posts, tweets, and emails from dozens of us in the metastatic community, something clicked, and I was contacted Monday afternoon by a senior producer at the TODAY show who had seen my blog post.

It took a solid ten minutes to pick my jaw off the ground.

She was exceptionally warm and apologetic about how things had been handled last week, and promised me she'd do her best to make this right. She is also a breast cancer survivor. We had an exceptional conversation, and then she asked if I'd be willing to share my story in a segment she was putting together to air Thursday morning.

I didn't hesitate. Of course I'd take advantage of such a huge platform to share some real information about living with metastatic breast cancer. It came together quickly. A production crew was at my house filming and talking to me about my experience for three hours yesterday.

The producers at TODAY have been incredible to work with, and I trust that when all of this boils down to 2 minutes tomorrow morning, they will do justice to my story -- our story -- one that isn't often told amidst the pink hoopla of October.

I hope I make this community proud. To all my sisters in mets, I tried to speak from the heart, to beg for more research as it is our only chance of surviving, and to educate about what it means (and looks like) to live with Stage 4 breast cancer.

I'll be holding my breath watching with the rest of you at 8:15 tomorrow morning (and then I'll post the link to the segment here when it's available). As always, thank you all for your unwavering support.

Finding the Beauty

Unless you follow a certain segment of Twitter users, you may have missed the uproar that occurred last week following a set of articles about how a woman, Lisa Adams, is treating and tweeting about her Stage 4 breast cancer. The first article, published in The Guardian and written by Emma Keller, has been taken down (but cached here) while the publication investigates allegations that the author used quotes taken from conversations with Lisa without Lisa's permission. Journalistic fail number one. 

The gist of the article is that Lisa is over-sharing on social media. (Isn't that what the "unfollow" button is for?) I've been a follower of Lisa's for awhile, long enough to remember when her cancer metastasized after more than five years' dormancy. So she hasn't been in "decline" for seven years as Emma Keller incorrectly observed. Lisa isn't even "dying out loud," as Keller asserts (journalistic fails nos. 2 & 3, at least), although the last month has not been easy for Lisa, who has spent most of it in a hospital receiving radiation treatments and working with her medical team to figure out the next course of treatment for her cancer.

That's what we stage four patients do--scan, treat, rescan, repeat. 

I am lucky. Right now (and since November) I have what's called no evidence of disease. But I still receive chemo every three weeks, still have scans every three months, still live with the fear every. single. day. that this cancer could change its course, figure out a chink in my chemo's armor, and wreak havoc on my body, my life. Still, I would not yet be dying. I--and Lisa--have incurable cancer. But we are very much living with our disease.

The second article was an editorial in the New York Times, written by (wait for it) Emma Keller's husband, Bill Keller, less than a week after Emma's article in The Guardian. Lots of us in the blogosphere are asking and none of us are quite sure why this couple chose Ms. Adams to gang up on. Mr. Keller is a former executive editor of the Times, and certainly must realize the weight and reach and influence of his space in that publication. He chose to be an ass, anyway.

He focused his questions not on whether Lisa was sharing too much (although he questioned that, too) but on whether she was grasping at straws to keep her alive when she should instead (I'm paraphrasing here, but barely) do the graceful thing and just die, already. 

The Twitter-verse and blogosphere erupted with anger at the Kellers' collective lack of humanity, and rightfully so. Lots of people have written very thoughtfully about how uncouth the Keller articles were, and those posts are worth reading. As is Lisa Adams' blog and Twitter feed, if you're up for it.

Not to beat a dead horse, but I do want to comment on an idea that both Bill and Emma Keller failed to entertain: that why Lisa Adams writes--why any of us with cancer write--has nothing to do with them. I'm speaking for a lot of people, now, so I want to tread carefully, but I think most of us write because, as my dear friend Sandi knows, writing is healing. Sure, we adore our audiences, but we write because it is therapeutic for ourselves. 

We write to share our experiences, to tell our stories, to maybe make a difference, to educate, to express part of the ever-fluctuating landscape of emotions that comes with a cancer diagnosis, to offer hope, to heal. In writing, we find peace/solace/beauty/comfort/life. We find life. And then we share those things, in the hopes that you, too, will see them. 

I was livid about what Emma and Bill Keller wrote, but if I'm going to find a silver lining, the reaction to their articles has shed light on what it means to live with--and write about--metastatic breast cancer. As Lisa would say, I'm trying to find the beauty.

Love/Hate

I never meant to take a month-long break from this space. Life--and the holidays--just sort of took over. I've been busy baking and decorating sugar cookies with Quinn, making waffles at his preschool's breakfast-with-Santa event (where the waffle makers kept shorting the fuses in the fellowship hall and the line for waffles kept getting longer and some of the waffles we sent out may have been undercooked), and I don't even know what else. Last-minute shopping? Getting our Christmas cards out the door? Complaining about how cold my feet are whenever it drops below 65 here? Hiking Camelback with Chris?

It's a good kind of busy, and it has been nice not to give as much attention to cancer over the past few weeks. Well, my own cancer anyway. Which brings me to something I've been thinking about quite a bit lately.

I have a love/hate relationship with social media.

On the one hand, it brings my attention to stories like this, which renew my faith that I will be okay. I will live to see Quinn graduate from high school. Because even when you think there are no options left, there are mad (aka brilliant) scientists and billionaires working on flies to come up with tailored options for treating cancer. This is one of the coolest things I've read this year. I don't usually read Esquire. I probably wouldn't have seen this story but for social media.

I also love the community of it, because sometimes you need to have a 2 a.m. conversation with other people who are also suffering from steroid-induced insomnia and hot flashes, even if you've never met each other in person. On Monday nights, I try to participate in a chat on Twitter that uses the hashtag #bcsm, for "breast cancer social media." It's typically around the same time I'm trying to get dinner on the table and Quinn cleaned up and ready for bed, so I don't always participate so much as hang out on the sidelines or read the transcripts after the fact. I don't know the numbers, but a lot of people--from survivors to caregivers to practitioners--join these chats, which are moderated by a couple of survivors and a breast surgeon. It is a way to connect with others who know exactly what you're going through. One week, I commented that it was like showing up at the bar in Cheers, where everyone knows your name (or at least your side effects).

The topics of these Tweetchats change weekly. In November (and of course I'm late to the game on this--typical), the focus one week was "the invisible scars" of breast cancer. Women mentioned all kinds of things, from infertility to poor body image to trouble with intimacy to the lasting effects of chemobrain. For me, the answer was all of these things, yes, but far and away fear has always been the most obvious and lasting of my scars from this disease. Fear of more mets, fear of progression, fear of leaving my family too soon. Talking about these fears helps release their grip. Talking about them with people who are also experiencing them as intensely as I am reminds me that maybe I'm not completely crazy.

On the other hand, social media can be a scary place for me. Scrolling through my Facebook feed as we boarded our flight home from visiting my dad over Thanksgiving, I learned that a friend had died right after the holiday. Breast cancer took her from her two daughters, ages 8 and 11, who will now not have their mom around for Christmas or for when they start middle school or learn to drive or any of those other wonderfully ordinary events every parent and child should get to share. I saw the news just after I had buckled Quinn in to his seat next to mine, and I didn't even try to stop my tears.

Between sobs, I told Chris I was done with Facebook, that I couldn't take it anymore.

A couple of weeks earlier, I'd learned (via Facebook messaging) that another friend's cancer had spread to her brain, where most chemo can't travel because of the blood/brain barrier. She would need what's called whole brain radiation, which is probably about as fun as it sounds. And last week, another friend got the same news, just weeks after absorbing the shock that cancer was in her liver. As the rest of us race around marking items off our Christmas lists and hurrying to get cards out on time, these women are rushing to meet with specialists to come up with new treatment plans, in order to stop breast cancer in its tracks, in order to--we hope--spend more Christmases with their loved ones.

Facebook and Twitter aren't always the most personal communication tools, but they're how many of us with cancer share our news to friends far and wide. They provide an easy delivery system, and can bring forth huge bastions of support. Most people who read this blog link to it from Facebook.

With every loss, though, every piece of shitty news, I swear off social media for awhile. Bad news stirs up so many fears for me that it can be immobilizing. Coming across an errant status update before bed can leave me up worrying half the night. I haven't mastered the art of shutting off my emotions, of removing myself from the disease enough to just listen and advocate. Not yet.

I have also struggled over the past few weeks with how to enjoy the relief I feel over my clean scan at the same time as the grief I feel about my friends who aren't doing as well. I've been so lucky. I have consistently responded to treatment. I thank my lucky stars every day for that. For now, at least, I am not leaving this family.

Like it or not, I am part of this online community, this cancer community that brings bad (and good) news, often in quick succession. Another friend recently posted that a spot on her liver is benign. Someone else that the tumors in her brain are dying; treatment is working. For stories like these (and the cute kids on Santa Claus' lap you guys keep posting), I am usually back to my social media feeds within 24 hours. Because don't shoot the messenger, right? Facebook isn't the problem. Cancer is.