Friday, August 29, 2014

Around the Web

{photo credit}
Here's what I found on the web this week. Every week, I hope it will be the cure, but I do believe we are getting closer. Let's just get there faster.

Is This Why Brain Mets Occur? Is This How We Can Stop Them?

"Now Memorial Sloan Kettering researchers have found that a protein called cathepsin S may play a key role in the spread of breast cancer to the brain. A complex interplay between breast cancer cells and certain surrounding cells called macrophages induces both cell types to secrete increased levels of cathepsin S, an enzyme that promotes the cancer cells’ ability to metastasize.

In addition to potentially helping doctors predict which breast cancer patients are at increased risk for brain metastasis, the discovery, published recently in Nature Cell Biology, suggests that cathepsin S could be an important target for new drugs."

Why We Need More Words to Describe Living with Cancer

What words do you use to describe your breast cancer journey? Battling? Thriving? Surviving? Suffering? Treating? All of the above? 

For the most part, I think to each her own when talking about cancer and otherwise, but I do think the author here is right: Amy Robach, by virtue of her position as a journalist, has a special responsibility to choose her words more carefully.

Public Service Announcement: Pfizer Initiates Expanded Access Program for Treating Certain Advanced Breast Cancers

"Under its expanded access programs, the U.S. Food and Drug Administration (FDA) works with companies to allow access to investigational therapies to patients with serious or life-threatening illnesses who do not otherwise qualify for participation in a clinical trial and for whom there are no comparable or satisfactory alternate therapies."

This particular drug, palbociclib, is for hormone-positive, HER-2-negative breast cancer patients.

Breast Cancer is Really (at Least) 10 Different Diseases

While it's inspirational to hear, "My aunt had breast cancer 10 years ago and is doing great now!" it probably doesn't have any bearing on how someone else diagnosed with breast cancer today is going to fare. As I keep reminding myself when I see my friends dying -- whose cancer is, on paper, very similar to my own -- every disease blueprint is unique.

How Much is a Cancer Drug Worth? The UK is Reevaluating.

"Big manufacturers set to be affected by the changes include Roche, which came under fire this month from Nice [National Institute for Health and Care Excellence] for failing to cut the price of Kadcyla. The £90,000 per course drug is for women with advanced breast cancer. Nice rejected the drug as failing to offer value for money at that price."

I am eternally grateful for the quality of my health insurance.

Monday, August 25, 2014


Quinn was five months old when I was diagnosed with Stage 4 breast cancer. At the time, the statistics I could find (when I dared to look) said about twenty percent of people with metastatic breast cancer would make it to the five-year mark. I couldn't help myself; I equated that statistic with me having a one in five chance of watching my son start kindergarten.

Kindergarten is still two years away. I am not there yet. But I am doing exceptionally well (knock on so much wood).

Quinn started preschool this week, after a short summer break and at the same school he's been attending since last October. School -- if you can call it that -- is not exactly new for him, but he has a new teacher with new friends to make. We bought him a new lunchbox, green with dinosaurs on it.

A lot of the moms of kids in Quinn's preschool are starting to chat about which school our kids will go to for kindergarten, and, slowly, I've found myself joining the conversation. I've spent the last couple of nights (crazy wild weekend here!) researching charter schools and open enrollment options for the public elementary schools in the districts next to ours. Although we love our house and neighborhood, we are nestled between two excellent public school districts. Ours, on the other hand, is just okay. I'm not sure I'm willing to accept "just okay" in a state with one of the worst public education systems in the country.

A lot can happen in two years. Cancer is a sneaky and unpredictable beast, and I still live in three-month increments. But as I was reading about different charter schools' philosophies late last night, it dawned on me that -- sure enough, statistics be damned -- I am starting to make actual, real-life plans to be here for Quinn's elementary school years. I am letting myself believe this could really happen.

We also bought Quinn a big boy bike this weekend. At REI, we couldn't get him off the darn thing. For at least half an hour, he wound his way expertly through tent displays and racks of clothing and the rock-climbing gear. He paused to check out the ropes hanging from the ceiling. "One sport at a time," I cautioned him as he tried to pull himself up by the carabiners.

And then I caution myself because I don't want to jinx anything: one milestone at a time.

Thursday, August 21, 2014

Around the Web

I've been a little remiss in posting these finds. Blame it on summer?

Our local public radio station did a piece earlier this week on summer seasonal affective disorder (SAD). The gist of it was that SAD is just as likely to hit Phoenicians in July and August as it is mid-westerners in February because we are stuck indoors just as much as those shoveling snow mid-winter. I don't think I need antidepressants to deal with Phoenix summers (yet; ask me next month when everyone else has moved on to pumpkin spice lattes and it is still well above 100 here).

But I do my best to get out of here as often as possible in the summer months. I'm limited by my chemo/lab schedule and our budget, but we get creative. Tag along when Chris has a conference in Portland in August? Sign me up. Drive to San Diego to stay with friends for a long weekend before Chris' semester starts again? Yes, please. If I could get away with it, I'd be a total snowbird. As it is, my head still thinks it's on summer vacation.


Here's what caught my attention on the web the last couple of weeks. See something you think I should include here? Please send me an email.

One More Reason to Limit Pasta?

If only I knew whether my tumor tissue had the IGF-1 receptor. . .  I'll admit I had toast (whole grain, smothered with mashed avocado and a drizzle of olive oil) for breakfast, and we eat pasta or pizza in our home about twice a week. I haven't changed my diet much since my diagnosis, since I've always aimed to eat pretty healthily. Tell me, how has your diet changed (if at all) because of cancer?

Another Gene Mutation to Blame for Breast Cancer

"The breast cancer risk for women younger than 40 with PALB2 mutation was eight to nine times as high as that of the general population."

Guess what I'll be talking to my oncologist about the next time I see him.

A Link Between the Pill and Breast Cancer. Are You Surprised?

"The pill is essential; not getting cancer is too. How do you choose what's more important—a lifetime of easy reproductive autonomy, or ratcheting down your risk of a deadly disease by marginal amounts?"

How Sleeping in Total Darkness May Help Fight Breast Cancer

You can turn off your iPad at night, but what if you work the night shift?

Immunotherapy Continues to Gain Traction

"We all get vaccinated when we are kids, and we know boosters can work for incredibly long periods of time,” Herbst explained. “That’s because the immune system has such a long memory. And with immunotherapy, if a tumor changes, the immune system can change to attack it too.”

And More Good News About Aspirin, Too

“People should talk to their doctors to make sure there’s no risk of bleeding, but the evidence is that everyone between 50 and 65 should consider aspirin.”

How Cancer Cells are Like Snowflakes and Fingerprints

"An important question about chemotherapy is whether resistant mutations already exist in a few rare cells in the tumour before treatment begins or whether they arise through natural selection as the cancer evolves during therapy."

I Hope This Isn't How My Colleagues/Friends/Neighbors Reacted to My Dx

At the very least, please see your doctor if you think something doesn't feel right.

A New Type of Therapy to Stop Metastases?

"Now, the duo have developed an improved version of their compound, which they hope will eventually prevent the cancers from spreading further once they have metastasized. And because it only blocks cancer cells from landing at their intended targets - it doesn't kill any cells, cancerous or not - the substance in theory is nontoxic."

Tuesday, August 19, 2014

The Sun Still Rises

Today marked three years since I was diagnosed with breast cancer. It is always a strange anniversary--I can never figure out if I am supposed to celebrate or mourn the day.

It was a day filled with dichotomies like that.

I mourned. The world saw the news of journalist James Foley's gruesome death at the hands of monsters. We hoped the talked-about video was a fake. I thought my chest might cave in on itself when I read Foley's mom's acknowledgment that her son was gone.

We had some dear friends over for dinner last night, an interracial couple who'd spent the summer abroad. We wanted to hear about their experiences and catch up with them over a few drinks and dinner. This morning, I read this beautiful piece that exemplified the sad state of race relations in America amidst the continuing unrest and chaos in Ferguson, Missouri. Even given Ferguson, I had no idea "racial skepticism" was still such an issue. I'd naively thought our country was better than this.

And I learned that one of my favorite teachers from high school, my first creative writing teacher, died on Monday. Bob "Mac" McAllister was relatively young, 73, and the cause of death wasn't apparent from the obituary posted by the local paper. We sat on mismatched couches in his class, a safe space in which I first learned how cathartic writing could be.

I celebrated. Quinn, who is often a total goofball during swim lessons, impressed the coach at a makeup class today by listening to her every instruction. The deck supervisor came over to where I was sitting behind the glass viewing wall to comment on how at ease he seemed in the water. My heart swelled with pride as he practiced his dives and back floats with aplomb.

Afterward, we went to the library where he spotted a book meant for older kids, a chapter book from the How to Train Your Dragon series. He grabbed it happily off the shelf, claiming it as his own. But when I took it to check it out, the librarian realized a hold had been placed on it and she couldn't let us have it. I did my best to explain to Quinn why we couldn't take this book home today. His lip quivered and he started to whine: "But I want it!"

I told him that we couldn't get it this time, but assured him we'd look for it next time (and requested our own hold on the book). Then he calmed himself down, got it together surprisingly quickly, and asked me to carry him out to the car. I was impressed.

As I buckled Quinn into his carseat, I told him how proud I was of him for how well he handled the situation. I said I knew he was probably sad, but I thought he'd been incredibly mature. Then he said, "I'm not sad. I'm disappointed," and I just about called the writers of Sesame Street then and there to thank them for my son's vocabulary.


Monday was my friend Brigid's thirty-eighth birthday. She spent it in the hospital, fighting an infection in her blood. She posted a photo on Facebook today; her mom was giving her a foot rub and Brigid captioned it, "One lucky girl!" Because more than eight years after her diagnosis, cancer has not broken her spirit. You cannot let it.


When we got home from the library, Quinn marveled at the rainstorms that were hitting Phoenix this afternoon, relieving the desert of its searing heat for a gratifying stretch of minutes.

We'd heard the band The Head and the Heart's song "Another Story" in the car earlier, and a couple of stanzas from the song have been on repeat in my head all day:

I'll tell you one thing
We ain't gonna change much 
The sun still rises 
Even with the pain 

I'll tell you one thing 
We ain't gonna change love 
The sun still rises 
Even through the rain

Tuesday, August 12, 2014

An Update

After chemo yesterday, I'm feeling pretty queasy today. I don't usually take Quinn to daycare on Tuesdays, but the option was available today so I took advantage of it. And even though our trip to Portland alleviated much of my anxiety going into this week, I still cried into Quinn's pillow in the dark as I laid down to tuck him in last night. Some of it was the slight stress I was feeling over my scan results -- UPDATE: as I was writing this, my doctor called to tell me MY SCANS WERE CLEAN!

There's no easy transition here, and mostly, my tears last night had to do with a friend, Brigid, who was admitted to the hospital yesterday for the third time in the last couple of weeks. It is really tough to celebrate my good news at the same time that my friend suffers. The tumors that have been plaguing her lungs for nearly eight years with nary a symptom are now growing so fast they are causing her lungs to repeatedly fill with fluid despite procedures to drain them; Brigid can no longer breathe very well unassisted. 
{Brigid and me, December 2013}
On paper, Brigid's cancer is very similar to my own: Stage 4, Her-2 and ER/PR+. But the drug that has held me in remission for nine months now had almost no effect on Brigid's cancer. Killing cancer is not yet a perfect science. 

When I first met her, I was in awe of how long Brigid had lived with this disease -- about five years at the time. As I approach the three-year anniversary of my diagnosis, though, I realize five years isn't close to enough time; neither is eight years. Is there ever enough? Are we ever ready to throw in the towel? Does it matter what we want?

Who knows why I respond to drugs that haven't stopped Brigid's disease from progressing? Who knows how long my luck will hold? For now, I am feeling an odd mix of relief and fear for my friend. My stomach is doing flip-flops, and this time I can't entirely blame chemo.

Monday, August 11, 2014

Better than Xanax

Somehow, three months have passed and it is time for another scan. And, miraculously, I have not been completely hijacked by anxiety this time around (only occasionally held in its grips over the past couple of weeks). I'm not saying I've been a free-spirited, deep-breathing, always-patient monk about it, but remember: this is me we're talking about. Was I ever going to be that person?

My secret to staying sane? Lots of wine.

I'm only slightly joking.

We spent the last week in Portland, Oregon -- Chris at a workshop on volcanic ash, Quinn and I exploring summer in the Pacific Northwest with one of my best friends from college, J.T., and her two girls. We took our three preschoolers to the zoo, the park, a fountain they could splash around in for hours, a farm to pick berries, another park, out for ice cream a couple of times, and to the Oregon coast to explore the beach. We stayed busy.

My friend took me to her -- how do I say it? intense? sweaty? insane? -- spin/dance class where I almost fell off the bike. Her husband had asked me the night before if I had much rhythm even though he's known me since we were 21 and has probably seen me on the dance floor. When I said, "Not really," he replied, "You're going to hate it." Hate is a strong word, but I probably bore a strong resemblance to Elaine in her infamous "Seinfeld" dance. Since I didn't pass out, though, I figured it was a good indication I'd do okay on the echocardiogram of my heart this week. I hope.

Between the blackberries and the misty coastline, I was homesick for that corner of the country where I spent a good part of my childhood. I was ready to find Chris a job studying the soil of the region's winemakers. That's a good job for a geologist, right?

It's not like Chris didn't love the inexpensive microbrews or the lack of pretension or the fact that the only things that will get you judged are putting your recycling in the wrong container or driving too aggressively.


This morning I woke up before Chris and Quinn to drive across town for my CT scan, then across the street to the hospital for the ultrasound of my heart. I grabbed coffee between my tests, and a sandwich afterward, before heading a couple of miles south to my infusion center for chemo.

My nurses all asked if I'd had a rough weekend thinking about my scan (results of which I'll get Wednesday afternoon). The truthful answer is no, because it's hard to think about an upcoming scan when you're chasing toddlers and marveling at perfect summer weather and attempting to stay upright while dancing on a spin bike.

I wonder if I can get a prescription for a trip to Portland every three months?

Friday, August 1, 2014

Around the Web

We're in Northern California for Chris' 20-year high school reunion, which happened to coincide with the Sonoma County Fair. Next week, we'll be in Portland. Chris has a conference for work, and one of my best friends lives there. This guy and I are so happy to be out of Phoenix when it is 113 degrees.

We return just in time for another round of chemo for me on the same day I have my next scan and an EKG to make sure my heart is holding up to all these meds. I'm hoping the vacation will keep me from getting too anxious about the scan. I'll let you know how THAT pans out.

Anyway, here's what I found on the web this week.

A New Approach to Treating Cancer?

"Doctors need to ascertain which cell subgroups are truly driving the tumor’s growth and metastasis and select drugs that target the critical genes within those cells. It can be a mistake to assume that the largest, most dominant subgroup is the one to be targeted."

This Story Hit Close to Home

I would argue that having a toddler around helps make chemo bearable. It's hard to focus on how terrible you feel when you've got a child demanding that you build train tracks or watch another episode of Curious George with him.

Why Some Women Opt for Mastectomies (It's Not Just About Survival)

This story also hit close to home. 

Can Doctors Teach the Body to Cure Cancer?

More on immunotherapy and the future of cancer treatment.

Have an article you think I should include here? Email me at jen (dot) campisano (at) gmail.