Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved

This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.

How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.

He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear.

Wait until he finds out about this blog.

Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?

I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.

1. What rang true again and again in our family was share age appropriate truth, but don’t overshare. 
• a.  For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. 
2. Only answer their specific questions. 
• a.  When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.
3. Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.

I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.

What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, The Magic Tree, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.

Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.

There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.



The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).

Even though I’m not in treatment for cancer anymore, I’m going to keep using The Magic Tree with Quinn to prompt our discussions of cancer, to help us both process what our family went through.

What Are Breasts For?

As October winds down and we prepare for Halloween celebrations tonight, I thought I'd share some final thoughts on the month. And on breasts in particular.

***

The librarian at Quinn's school is a friend. She was his music teacher in preschool, and now I see her when I'm volunteering as garden mom or at PTA meetings. All of which to say that we're Facebook friends, as well as real-life friends, and we often get fired up about similar things. Yesterday a few weeks ago (because I'm spending all my energy right now on growing a human and also a remodel project to add a nursery so these unfinished posts get stuck here for a month), I saw a post on my friend the librarian's Facebook page regarding a book.

The book seems to be about talking to boys about puberty and other coming-of-age concerns. Another mom had seen this, was rightfully pissed, and was asking whether our librarian knew anything about this series or why the editors had been such dolts (I'm paraphrasing).

Here is a screenshot.

First - girls have breasts to make milk for babies? No. Women do. Girls shouldn't be having babies, and we shouldn't perpetuate that notion in a book aimed at BOYS. But that is hardly the only thing that makes this page offensive. The second reason for girls having breasts, according to Alex Frith for this Usbourne series, is "to make the girl look grown-up and attractive," and virtually all breasts can do this. 

Hold on while I pick the keyboard keys off my forehead. 

Am I the only one offended? Is it because my real breasts have been gone for nearly six years now? DO I NO LONGER LOOK GROWN-UP?!

I've been thinking so much about my breasts this month. Not only because it's October and WE ARE ALL AWARE OF BREAST CANCER ALREADY, but also because I'm going to have a baby sometime in the next few weeks. Side note: both Pinktober and this remodel have seemed to drag on FOREVER, which is weird because at the very same time, this pregnancy has zipped by in what seems like an instant. 

When Quinn was born, I breastfed from the start, right up until I had to begin chemo a few days before he was six months old. I loved that bonding time with my baby boy, his little face turned up to mine as he slurped and suckled. I was lucky. Nursing didn't hurt. My nipples weren't cracked or sore. I craved Blue Moon and was thirsty all the time, but nursing was relatively easy for me. It's part of why I knew it was bullshit when my doctor told me the lump in my right breast was mastitis. 

I was in awe of my body and what it was able to accomplish. I GREW a human! And then made food for him for HALF A YEAR! It blows my mind what women can do. 

And again, I'm growing a human! I have the fatigue and tell-tale waddle and peeing my pants every time I sneeze to prove it. 

But my breasts aren't tender as they prepare to feed my baby this time around. I no longer have nipples. Even my doctor occasionally forgets and asks me about breastfeeding, but short of me regrowing a boob like a lizard regrows its tail, nursing from my fake boobs is not going to happen.

I have heard that there is a possibility some milk will still come in in the days after I give birth, and I might have painful lumps in my armpits where a few milk ducts may remain. If that happens, I'm tempted to ask for more surgical drains to be placed -- like I had after my mastectomy -- to collect some of that liquid gold. Brilliant, right? I am also so grateful I was forewarned. That would be one terrifying surprise to wake up to, a whole bunch of painful lumps in my armpits after five years of thinking I was going to die of cancer.

I've had some wonderfully generous women step forward to offer me their extra breast milk, and the hospital has assured me our baby will have breast milk while we're at the hospital. Also, while I know "breast is best" when it comes to feeding newborns, plenty of babies do just fine on formula. Still, it saddens me to my core that I won't be able to feed this baby girl the way I was able to feed Quinn. 

On the other hand: no excuses, Chris. Those middle-of-the-night wake-ups are FAIR GAME for both of us. Mama just might get some sleep this time around. 

***

Beyond my own breasts, October has been full of the usual tired pink crap, though I have a lot of adorable pink stuff coming into my life right now so I can't totally hate on the color itself.

Yesterday, my dad sent me an article about the frivolity of the pink culture that emerges every October, even as it is meant to say to us with or beyond breast cancer that we are celebrated and supported. The whole article is worth reading, but two lines in particular struck me:

"The association of femininity and breast cancer is pernicious, because it genders the disease, meaning that a diagnosis of breast cancer marks patients as women first, people second. It implies that our womanliness is diseased, not our bodies."

Like the article's author, I didn't initially associate my diagnosis and the ensuing surgeries (and chemically-induced menopause, and hair loss, and days on the toilet post-chemo, et cetera, et cetera...) with a loss of my womanhood, though as time went on, there were certainly periods when I felt less than feminine. Instead, like most people facing CANCER, I was worried about my life. Thinking I was metastatic for years didn't help, since stage 4 is the only stage of the disease that kills.

Being surrounded by the color of Barbie dolls and bubble gum doesn't feel helpful. I am so thankful for black, purple, and orange today. And chocolate.

As you all know, I have lost a LOT of dear friends to breast cancer. Chris lost his dad to pancreatic cancer. My dear friend and fierce advocate Beth is nearing the end of her life now, which is devastating our MBC community and ripping a hole in her young family.

This, I think, is the biggest rub when it comes to Pinktober: it's not about our breasts.

They might be fun for a bit or serve a very special purpose for moms who are able to nurse when they're healthy, but when our lives are on the line (and they are -- 113 American women STILL die of breast cancer every damn day), our breasts are the last thing we're worrying about. And they definitely aren't what defines us as women -- healthy or not.

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."

What I Wish I'd Known When I Was First Diagnosed

A few months ago, after being asked for the umpteenth time what advice I'd give to someone newly diagnosed with advanced breast cancer, I reached out to pose the question to the women in my online support groups.

I can never think of just one answer to this question. I say things like:

• Be your own advocate.
• Ask for help from those who love you. 
• Try to make the most of each day, even when you feel terrible. 

But it never feels like quite enough. So here's what other women who've been down this rough road have to say on the matter.

{photo credit}

Find support! Cancer is hard and stage 4 is even harder. I always suggest breastcancer.org. -- Jenny

Prioritize carefully. -- Jimmie 

I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support". I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa

I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie

The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal

get rid of drama (including people)....simplify.....and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley

Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches - but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann

Learn to advocate for yourself. -- Karen

Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda

Something for anxiety AND a sleep aid. -- Susan

Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily

I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen

Don't just try traditional medication. Go Asian, drink juice, exercise, and pray...pray like never before! -- Melanie

LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa

Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa

Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn


The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany

There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things...always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit

Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna

Mine to share would be to "Expectations breed limitations...be present!" Finding yourself and trusting yourself is very liberating. -- Wendy

You MUST be your own advocate. -- Jody

Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia

I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi

Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne

We never have another chance at today, so make the best of it! -- Catherine

I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi

LIVE every day! -- Kelly

Find a doctor you love and trust. It makes the ride less horrible. -- Beth

Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen

Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet....you're probably going to be around much longer than what you think. -- Annelie

I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura

Don't panic. -- Anne

BREATHE! -- Jessica

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.

Around the Web

We had a busy weekend here at the Campisano household. Besides Quinn making a mud pit in our back yard (see photo, below), my mom moved back to town after a two-year stint in Denver.

My younger brother flew down from Alaska to help her make the drive here, and he and I were both close to tears when they arrived Saturday night. Chris would say this is because us Akres are criers. The truth is we might be, but also that I hadn't seen my little brother (who's 6'4") in nearly eighteen months. He was deployed to Afghanistan for nearly half of that time, and the other half it was -38 degrees Fahrenheit where he lives.

So even if us Washingtonians were disappointed by the end of Sunday night's Super Bowl, all was okay in the world for a little bit because I got to watch the game over some chili and queso with my brother (and some other friends and family, including my mom).

(I realize this is not the best picture, but Quinn literally never stops moving and I should probably know by now to shoot everything in "sports" mode. Still, look at that smile. Clearly, this was taken before the Seahawks' last play call.)

With all that's been going on, I've slacked a bit on the "Around the Web" series. But here's what I've seen on the Internet over the past couple of weeks. Have anything to add? Email me at jen dot campisano at gmail. I like hearing from you guys.

The Emperor of All Maladies: A Biography of Cancer Becomes a Movie

Perhaps I'll do better watching this on screen than I did in book form? I picked up the book (some of the best prose I've read) shortly after my diagnosis. It hit too close to home, and I stopped reading. I haven't had the guts to try again. Maybe this will be my impetus.

"So she turned to PBS's premiere filmmaker, Ken Burns — whose mother died of breast cancer when he was eleven — to shepherd the project. The result is a three part, six-hours series arriving on March 30 narrated by Edward Herrmann, who died of brain cancer shortly after completing work on the film."

Or maybe not...

This Is Important: The Pressure to Stay Positive

"I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this."

A New Strategy to Fight Cancer Actually Starts by Making Cancer Tougher

"'We think that being relatively soft lets invading cancer cells slip through the body and colonize new areas,' Surcel says. 'You can envision an octopus having a much easier time getting through a small opening than would a lobster. 4-HAP seems to make the cancer cells more like the lobster.'

The team is now testing 4-HAP in mice. The drug is already in use in some countries as a treatment for jaundice, so if it shows success against pancreatic cancer, it could potentially make it to market relatively quickly, Robinson says. But even if that doesn't happen, the study demonstrates that the new drug screen has great potential, he says."

And Yet Another Might Look to Create a Tumor Within a Tumor

"A tumor, as strange as it may sound, is a little society. The cancer cells that make it up cooperate with one another, and together they thrive.

Scientists are only starting to decipher the rules of these communities. But if they can understand how these cells work together, then they may be able to stop the tumor. “You can drive it to collapse,” said Marco Archetti, a biologist at the University of East Anglia and at the Icahn School of Medicine at Mount Sinai."

Why Breast Cancer Education (Rather than Awareness) Remains So Important

"Women with breast cancer often don’t know what kind of tumors they have, a new study found.

Not knowing one’s tumor features isn’t necessarily tied to worse outcomes, but better knowledge might help women understand treatment decisions and take medications as directed, said Dr. Rachel Freedman, the study’s lead author from the Dana-Farber Cancer Institute in Boston.

Based on their medical records, only 56 percent of women reported the correct estrogen status, 58 percent reported the correct HER2 status and 57 percent reported the correct stage. Only about one in five women reported the correct grade.

Overall, only 8 percent of women correctly answered all four questions, but the lack of knowledge was more pronounced among minority women, the researchers report." (emphasis mine)

Scientists Find New Target for Triple Negative Breast Cancer

Triple negative breast cancer (TNBC, for short) is what I lost my friend Renee to late last year. If targeted treatments could be developed for these patients, that is an absolute game-changer. It's not a cure, but — like the treatment I'm on — it's getting closer. 

"The team concludes that increasing expression of beclin 1 could be a promising therapy for breast cancer, especially for patients with the triple-negative type.

Beclin 1 is already a target of four classes of drug approved to treat other types of cancer, and the team suggests more research should now be done to see whether these could also save lives of breast cancer patients."

. . . And Then Boom

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.

Life Savers

These buildings are where so much magic happens. A few weeks ago, my friend and Avon Walk teammate Shelby, a researcher at Genentech, asked me if I'd like her to try to arrange a meeting with some of the trailblazers in the Her-2+ research field while I'd be in town. "YES, PLEASE!" I think I wrote back immediately.

Shelby orchestrated that meeting, and it was one of the most memorable experiences of my life. Last Friday afternoon, my friend (and another teammate) Ginelle and I drove down to the Genentech campus, arriving nearly 45 minutes early because I was so geeky excited about what was about to happen.

One of the researchers is a guy Shelby met through Genentech's onsite daycare. His son is in class with her children, and when she found out he was on the development team for Kadcyla (the drug I've been on since last May), she might have told him my entire story and thanked him profusely and wept a bit.

Which is pretty much how I reacted when I met him last week.

I was so in awe of this guy, who is around my age, who has a 2-year-old son and was so amicable and open about his research and proud to show off his lab and just amazingly COOL as I stood there trying to think of just one of the million questions I had for him while also holding back tears.

He told me his dad died of cancer at just 50 years old.

He told me he's known as "the combination man." He plays with molecular combinations and tests them against breast cancer cells, most of them Her-2+ like mine were. He was a member of the small team that piggybacked a potent, bomb-like, extremely toxic chemo drug to Herceptin and got it to work, to deliver this bomb inside cancer cells that over-express the Her-2 protein without destroying the cells around them. He continues to play with combinations that will kill cancer more effectively and with less toxicity to the patient.

The other scientist I met is a true pioneer. When she came walking down the hall about twenty minutes into my conversation with the combination man, I could no longer hold back my tears. I don't remember if I hugged her. I was trying to maintain some composure.

She's been at Genentech most of my life, researching tirelessly (and also raising three kids). She was one of the primary developers of Herceptin, an antibody that binds to the Her-2 protein, signals those cancer cells to stop dividing, and tells the immune system to destroy them. Hands down, Herceptin has been one of the most important developments in treating breast cancer. She said it has been the best thing she's done in her life.

Mine, too.

I asked what was on the horizon because I'm always hoping to hear about the next big breakthrough, although I also understood that they couldn't go into too many specifics for so many reasons. They told me they're investigating what causes resistance to treatment. They're evaluating other drug combinations (a Kadcyla/Perjeta clinical trial is already underway). They're translating their successes with breast cancer therapies to other cancers. They're collaborating with researchers outside the U.S. They're working with regulators to speed things up where it might be possible.

They're energetic and enthusiastic and dedicated to their work. They're also scientists, and realists, and fully understand the wiliness of the beast they're up against.

I can't thank them enough for their help in slaying it. I hope they--and I--can continue killing cancer for many, many years to come.

Around the Web

What sparked my interest this week on the Internet.

These portraits aren't new, but they're new to me. And I LOVE them.

$9.5 Million for eradicating breast cancer? I might become a golf fan.

"It’s been 21 years since Skinner lost her dear friend, fellow LPGA player Heather Farr, whose breast cancer was misdiagnosed and ignored at age 24. Skinner has honored her memory by helping raise $9.5 million for breast cancer initiatives."

There IS life after cancer for more and more of us.

'"We used to think of the paradigm as cancer was something that we had, we treated it, we either got better or we didn't," notes Oeffinger. "And now that we have so many different, effective therapies, even patients with advanced cancer -- metastatic cancer -- they can be treated periodically again with different types of chemotherapy or targeted therapies that are coming, radiation, surgery, other effective therapies for keeping them doing well and keeping them active."'

Stopping the spread of breast cancer cells? Yes, please.

"Working with human breast cancer cells and mouse models of breast cancer, scientists identified a new protein that plays a key role in reprogramming cancer cells to migrate and invade other organs. When that protein is removed from cancer cells in mice, the ability of the cells to metastasize to the lung is dramatically decreased."

New treatment regimen could save fertility AND increase survival. Win/win.

'"We found that, in addition to reducing the risk of early menopause, and all of the symptoms that go along with menopause, goserelin was very safe and may even improve survival. I think these findings are going to change our clinical practice."'

This may be my excuse to go to Italy next summer.

"The Octava Pink test is now available in Israel and Italy, and is undergoing clinical trials to receive US Food and Drug Administration approval.

This is the first blood test ever that can reveal cancer, not merely markers that might indicate cancer or something else. Its innovation also lies in its examination of antibodies in the blood to pinpoint this specific cancer."


As always, if you have anything you'd like me to link to here, please email me at jen (dot) campisano (at) gmail or leave a note in the comments.