Thursday, October 1, 2015

A Story Half Told

So here it is. October is upon us. Tonight, even the lights at the top of the Empire State Building will glow pink.

And Quinn and I are in New York City to experience it. Chris will join us this weekend because he wanted to buy Quinn a hot dog on the Staten Island ferry as we make our way to the Statue of Liberty. Still, we're not just here for the cooler temps, the hot dogs, or even the pink lights.

Quinn and I flew out for the launch of a Pfizer-led initiative, A Story Half Told, that aims to change the breast cancer conversation to include stories of those of us living with metastatic breast cancer. The project debuted at Milk Studios last night with a gallery opening of photo essays documenting a day or two in the lives of five of us women, the idea being that photography can make a compelling impact in a way that words often can't or don't express.

Universally, the essays were poignant, raw, and intimately beautiful. You can view them all in their entirety here. In particular, the behind the scenes footage of Holley Kitchen's experience with her photographer, Angelo Merendino, had me completely choked up.

In addition to the photo essay, I was asked to speak at the event.

Here's what I said:

Thank you all so much for being here for the launch of A Story Half Told. My name is Jen Campisano, and this is my son, Quinn — the light of my life.

When Pfizer asked me to be a part of this project a few months ago, I jumped at the opportunity to share my story to a wider audience, to — I hope — give a better idea of what life looks like after a metastatic breast cancer diagnosis. Mostly, it looks like life, with a few more doctor’s appointments.

There are still kids’ birthday parties to attend, laundry to be done, backyard pools to swim in, bedtime stories to be read. There are also port draws, CT scans, chemotherapy appointments, and follow-up visits with my oncologist every few months.

What I want you all to understand from this exhibit is that metastatic breast cancer affects women at all stages of life, from all backgrounds and ethnicities. Cancer does not discriminate.

It is a terrifying, life-altering thing, to be told you have incurable cancer, that you’ll always be in treatment. But I want you to also see how each of us are living in spite of our illnesses.

Most days, we are thriving instead of cowering. We allow ourselves the freedom to rest and recuperate when we need it, but then we get on with the business of life — caring for our children, grandchildren, communities, gardens, and ourselves.

We fall down and then stand up again and again and again, even in the face of grave circumstances. It is what we do.

Quinn doesn’t know any different. I was diagnosed when he was just 5 months old, more than four years ago. I don’t know any different as a mom. We have been together every step of this, he and I.

When I was diagnosed, the statistics said I had a 1 in 5 chance of watching my son start kindergarten. Because of some incredible drugs and my dogged determination (my husband calls it stubbornness) and some very good luck, I have had no evidence of disease for nearly two years now.

I still receive a targeted chemo every three weeks as a sort of insurance policy. I had treatment Monday, then flew out here from Phoenix yesterday when I’d normally be recovering on my couch. I feel a little nauseated, and not just because I’m nervous about speaking in front of all of you.

God willing, I will walk Quinn into his first day of kindergarten next August. With new therapies on the horizon, there’s hope I will dance with him at his wedding, too.

I want that to be the reality for all of us living with metastatic breast cancer. That is my hope for this project: to shed more light and understanding on this disease so more research gets funded so more of us can get back to the business of living.

I am very proud to be a part of this exhibit, which so beautifully portrays the realities of our various lives. With that, here is the incredibly talented photographer who captured my story, Pei Ketron.


Maybe we can start to change the conversation about metastatic breast cancer by sharing our stories in new, compelling ways. Please spend some time on the Story Half Told website. Get to know these women, their stories. And then share them, please. The world needs to know, especially as Pinktober descends and pink ribbons fly all around us.

Disclaimer: I worked with Pfizer on a collaboration to raise awareness about metastatic breast cancer. The opinions expressed in this blog post are mine, not Pfizer's.

Monday, September 28, 2015

"How DID you get sick, Mommy?"

To be honest, I'm surprised it took this long. Quinn is a pretty observant four-year-old. He'll often notice the expression on a truck's face in one of his library books and ask me why the truck is angry/sad/has "its face scrunched up like that." He's a master at those find the differences games in his Highlights High Five magazines. And last time I got my hair colored, I joked with my stylist that Quinn would probably notice before Chris. He's an astute kid.

As I was drying him off after his bath Saturday night, Quinn put his finger gently on one of my radiation tattoos, a pin dot in the middle of my chest.

"It's bluish-green, Mommy," and I waited to see what he would say next. Would I correct him if he called it a freckle? How much information should I give?

"How did that happen?" he asked, not quite what I expected to hear, the concern in his face breaking my heart just a bit, but also making me incredibly proud to be this perceptive, empathetic boy's mom. He knew it wasn't something natural.

"It's a tattoo," I said. And I showed him that I have at least three more, two under my armpits and one at the top curve of my right breast. He wanted to see if I had more on my back.

"No, honey," I told him. "There aren't any more."

He didn't ask anything else, so I didn't give him any more information.


Quinn and I are preparing for our trip to New York this week (still more on this as soon as I'm able!), for an event at which I've been asked to speak. (By preparing, I mean I've been doing laundry and he's been packing his coloring books and Hot Wheels cars.) I've been asked to share a bit of my breast cancer story at this thing, with Quinn by my side, so I've also been preparing by trying to let him know what to expect.

I've told him I got really sick when he was a baby. That medicine called chemo made me bald, and now I still get medicine to -- we hope -- keep me from getting sick again. I've told him I'm going to talk about that a little.

I haven't told him more because he's only four. I don't want him to know some things yet, if I can help it. I try to only answer the questions he asks. I'm trying to craft a short talk that's appropriate with him by my side but also conveys to a roomful of people the devastation of this disease. I also have chemo tomorrow, so I will be portraying a very real version of what life is like after a metastatic breast cancer diagnosis when I get up to talk two days later.

Please wish me luck.


Last night, Quinn and I were looking at pictures of when he was a baby, and came across a couple in which I am bald.

"How did you get sick, Mommy?" Quinn asked, a variation on a themeapparently.

"I don't know, buddy. They don't know that yet."

They don't know.

Wednesday, September 23, 2015

Where to Turn for Help After a Cancer Diagnosis

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

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

Um, NO, is the quick answer.

But it got me thinking that I should write about the resources that have emerged and what I've found useful, in case it might help someone else out there. Have any to add? Please leave a note in the comments!
  • One major source of information was Dr. Susan Love's Breast Book,* which is now in its sixth iteration. I especially appreciate that this new edition includes an updated chapter on metastatic disease that offers some hope for emerging therapies and longevity. This book has been called "the bible for women with breast cancer," with good reason. When I was first diagnosed, I wanted to know as much as possible about the cancer inside of me, without the fear that can be brought on by "Dr. Google." Here was my answer, clearly laid out in the pages of this easy-to-read book. Fully indexed and written for the layperson, Dr. Susan Love's Breast Book takes a comprehensive look at breast cancer prevention, staging, treatments, pathology, and emerging research. In a field where new information is always emerging, this book offers a treasure trove of the latest data.

  • I have a love/hate relationship with support groups, both online and in-person. I love the potential of what they have to offer, but participating in them can be an emotional roller coaster. After all, you get close to people and in many cases, you have to face their worsening health or death. For awhile after my first course of treatment -- and every once in awhile since then -- I need a break to let my emotions recover a bit. When I was first diagnosed, a friend referred me to the Young Survival Coalition's Facebook support group. At the time, it was both a treasure trove of other women who were going through the same treatments as I was and a place where I didn't feel I completely fit in because there weren't many women with metastatic disease (fortunately). In the last four-plus years, I think YSC has done more to support metsters, but other groups targeted at young women with Stage 4 breast cancer have also emerged on social media. If you want to be added, find/message me on Facebook (link from the button on my blog). Note that there are fairly strict privacy rules on these boards. 
  • Speaking of social media, you may have heard me mention the Twitter chat with the hashtag #bcsm. This takes place on Monday nights at 6 PM Pacific / 9 EST. Topics range from the invisible scars of breast cancer to parenting with cancer to how to change the conversation around metastatic breast cancer. The chat is for all stages and ages, but is an excellent way to share information and find support. 
  • I have mentioned before how lucky I am to have the health insurance and access to care that I do, but I know everyone isn't so fortunate. I do think that the Affordable Care Act has made significant strides in ensuring access to care. I, for one, am relieved that I can't be denied insurance despite my poor health history. For assistance with co-pays and drug costs, check with the drug company providing your drugs. I know Genentech, the company that makes Kadcyla, has patient assistance programs to offer reduced-cost drugs to patients whose insurance doesn't cover the cost.**
  • On a similar note, the reason I walk in the Avon 39 Walk to End Breast Cancer every year is because of the programs they fund to provide everything from free screenings to women who can't afford them to meals to people who've been diagnosed with cancer. Obviously, services will vary depending on where in the country you are, but here are a few national organizations:
    • Cleaning for a Reason: "Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer. Our goal is to let these brave and strong women focus on their health and treatment while we focus on, and take away the worry and work of, cleaning their homes– free of charge." I reached out to this service early on in my treatment and they didn't have any partnered cleaning companies in Phoenix/Scottsdale, but they may be worth a try in your area.
    • Look Good/Feel Better: Because sometimes a little blush does make it easier to face the day.
    • Little Pink Houses of Hope: Offering family beach vacations/retreats for people directly affected by breast cancer.
    • First Descents: If you're feeling adventurous, First Descents offers surfing, rock climbing, white water rafting, and ice climbing (!!) trips for cancer survivors.
  • Other national organizations offer links to local support services. For example, the American Cancer Society has a location-specific searchable database for everything from free wigs to counseling/therapy. Living Beyond Breast Cancer is another excellent source of information, including a search function for clinical trials specific to metastatic breast cancer. 
  • Finally, I have heard excellent things about the Livestrong Foundation's fertility services, for those of us who've lost ours to cancer and/or cancer treatments.
What resources do you wish there were more of? What have you found especially useful? What have I left off this list?? And PLEASE let me know if you've gone on a surfing trip and/or family retreat -- I'd love to hear how that went!

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

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

Friday, September 18, 2015

Here's to More Birthdays

Birthdays post-cancer are a funny thing. I mean, of course they're great and we want more of them, but being diagnosed with cancer doesn't mean you don't notice the lack of collagen as the years pass. Or get irritated by grey hairs you-know-where when another part of you remembers you should just be happy to have hair.

Cancer doesn't give you a free pass when it comes to being weirded out about all the things that happen as you get older. For example, I have what I thought was the makings of a pimple on my chin, but now I'm pretty sure is just an ingrown hair. On my chin. Why? WHY ARE HAIRS GROWING THERE BUT NOT ON MY EYEBROWS!!!

So, I'm ecstatic to have more birthdays but also not going to pretend I don't notice the fine lines around my eyes or the fact that I can't eat peanut butter straight out of the jar (sometimes with a spoon) without then having to get raised eyebrows from the nurse at my oncologist's office as he weighs me in and sees I've gained four pounds. Sigh. But also? I don't really care. Because you only live once, and sometimes peanut butter is worth it.

I'm talking about getting older because my 37th birthday was last weekend. Somehow, that makes FIVE birthdays since I was diagnosed with metastatic breast cancer. SO, YES, I HAD A CUPCAKE. And a bourbon drink. What can I say? I celebrated.

I celebrated with friends and my husband who arranged a small gathering at a local...speakeasy? Hipster dive bar? There was skee ball and air hockey (at least I think. Us parents sat and visited the whole time. We were just happy to have a night of uninterrupted conversations. Even though, sure, ninety percent of those conversations were about our kids.)

We were clearly the early crowd, arriving at seven and ordering menu items like charcuterie and arugula flatbreads. Then around 9:30 things shifted, and we were easily the oldest, quietest, least collagen-ed people in the place. I vaguely remember a time when Chris and I used to leave to go out for the night around 10 p.m. (Here's photographic evidence.)

{circa 2006, celebrating Chris's 30th birthday}
But last weekend, we were home by 11, in bed shortly after, and I was still tired for two days because of it. And here's where I don't know whether to blame cancer treatments or aging or possibly even just being a parent to a little boy who wakes up ready to run and wrestle and do all of the things at seven a.m. But life is short, so why not do all of the things?

Here's to more birthdays and more doing and more celebrating (but maybe less peanut butter).

Wednesday, September 9, 2015

What to Eat During Chemotherapy

I kind of can't believe I've had a blog about living with breast cancer for more than FOUR YEARS now, and I haven't done a post about what to eat when you're going through chemo. I don't think. If I already have, go ahead and chalk it up to chemobrain. I've done posts about that, right?

Hint about what to eat: it's whatever you can stomach. 

Right now, even the word stomach sort of makes me want to vomit. I had treatment yesterday, and even though I'm on antibody-drug conjugate -- a targeted chemotherapy delivery method that isn't nearly as bad as the broad spectrum drugs I used to receive (I'm talking to you, carboplatin and taxotere) -- there are still some side effects. I've talked about the fatigue. I've probably talked about the nausea in passing.

But I don't know if I've talked about any solutions.

Here's what works for me (sometimes).

Zofran and/or Compazine: This is not the time to avoid medicines that can offer serious relief, with the important caveat (and possibly too much information) that anti-nausea meds can cause headaches and constipation, so you may want to do some cost-benefit analyses.

Ginger: Trader Joe's carries a great Ginger Beer (non-alcoholic, don't worry) that works wonders for staving off the waves of nausea. They also have some ginger chews that help when nothing else seems to.

Water: It's about the last thing I want in the days after my treatment (think how terrible a tall glass of water sounds when you're hungover), but water, especially with electrolytes, helps flush your system and is one of the truest ways I've found to feel better faster. When I was on broad-spectrum chemotherapy, I resorted to -- gasp! -- Gatorade or popsicles when my mouth sores were out of control. I know, sugar is evil, but sometimes it's a necessary evil. Kind of like chemo.

Smoothies: Fresh vegetables sound downright repulsive in the days after treatment, as good as I know they are for me and as much as I know my body needs the vitamins and nutrients to heal. So I've jumped on the smoothie bandwagon and make a version many mornings of the week. Bonus: it's one of the only ways I've found to get Quinn to "eat" his greens. Win/win.

Green Smoothie
Serves 1-2

1-2 ripe bananas
large handful of spinach and/or kale leaves
generous splash of orange juice or almond milk
1/2-1 cup other fruit of choice -- pineapple, mango, apple, or a combination
ice cubes

Throw everything in a blender and blend until smooth, then adjust taste to your liking. Sometimes I add a scoop of vanilla protein powder or a handful of raw almonds.

Banana Bread Smoothie
Serves 1-2

1 c. almond milk (I like unsweetened vanilla)
1-2 bananas
1-2 Tbsp. almond butter
ice cubes

Blend until smooth. Top with grated nutmeg, if you like. I serve mine with a colorful straw because it makes me smile.

Comfort Foods: This isn't the time to be concerned about your diet. Of course you want to be as healthy as possible, but sometimes homemade mac-and-cheese or stuffed shells are the only things that sound appetizing. I will say beware of tomatoes and tomato sauces, especially on broad-spectrum chemotherapies that can alter your taste buds and leave you with mouth sores. Acidity is not your friend on those drugs. But some soft pasta in a homemade salty chicken broth with sweet bites of chopped carrots? That could get me through some terrible queasiness.

Medical Marijuana: (NB: I have not tried this because I am prone to anxiety, in the past marijuana has tended to bring out the paranoid in me, and I do not need more of that in my life.) I have heard though that medical marijuana can work wonders for spurring a person's appetite. I am in favor of whatever works so you can keep your strength through treatment.


If all else fails, remember this:

What are your go-to recipes when you're feeling hungover from treatment? Do you have any favorite cookbooks? What alternative solutions have you tried to ease your nausea (or other treatment-related side-effects)?