Tuesday, February 24, 2015

Around the Web

I woke up Monday morning to the smell of rotten eggs wafting from a rarely-used shower in the bathroom off our kitchen. Through the frosted glass door, I could see a shadowy mass taking over the shower's floor. I hesitated for a minute before opening the door. To sludge? Sewage? It was black and not quite liquid so much as liquid filled with sediment. I quickly closed the door and tried to make my coffee without gagging.

Is Mercury still in retrograde?

Because our stove's gas leak is also back, even though we thought it had been repaired in November. So I'm relearning how to use a slow cooker while I (again) wait for the appliance company to (again) find a part for our thirty-something-year-old beast of an oven.

Clearly, I'm supposed to stay out of the kitchen this week.

(But if you have any winning crockpot recipes, please pass them along!)

The fourth plumber I called was able to come out to the house that day instead of asking me to wait until Thursday. I had just enough time to drop Quinn off at school, drive over to my oncologist's office for blood work, and get back home to meet the guy who'd climb on my roof to snake our shower, which I still don't fully understand. At least my house no longer smells like burning sulfur.

None of which has anything to do with this week's round-up. Except to maybe say that it pays to be persistent.

Case in Point: Slamon's Tenacity Advances the Field of Breast Cancer Research

"Slamon, now director of Clinical/Translational Research at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles (UCLA), conducted the laboratory work and testing that resulted in trastuzumab (Herceptin), the first molecularly targeted therapy for breast cancer. 

His is a particularly intriguing story because the scientist had to fight for 12 years to get trastuzumab from development through approval, keeping the project alive despite a nearly crippling early lack of funding."

A Poignant Call for Action on Metastatic Breast Cancer

Watch the video, too, if you can. 

And this article is helpful for background.

"We don’t really collect meaningful statistics on metastatic breast cancer recurrences. US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between—i.e., people currently living with metastatic breast cancer.

Remember, about 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

NCI and SEER database record incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence — which is how the majority of people are thrust into the metastatic breast cancer ranks."

An Interesting Way to Treat Mortality-Induced Anxiety

A long but very worthy read about an experimental therapy. What do you think? Would you try it?

"Every guided psychedelic journey is different, but a few themes seem to recur. Several of the cancer patients I interviewed at N.Y.U. and Hopkins described an experience of either giving birth or being born. Many also described an encounter with their cancer that had the effect of diminishing its power over them. Dinah Bazer, a shy woman in her sixties who had been given a diagnosis of ovarian cancer in 2010, screamed at the black mass of fear she encountered while peering into her rib cage: “Fuck you, I won’t be eaten alive!” Since her session, she says, she has stopped worrying about a recurrence—one of the objectives of the trial."

Chemoprevention Is Not Very Popular

Maybe because risk for breast cancer is not very well understood? 

"Given that these drugs seem to offer some protection, why are they not in widespread use? Serious side effects is one reason. Beyond blood clots and uterine cancer, other known reactions to the drugs include strokes, cataracts, bone pain, hot flashes, nausea and vaginal dryness.

For some women, the risk of such side effects may be worth taking, depending on their particular odds of developing breast cancer. Those odds can be figured by using a commonly used calculator, often called the Gail model, that estimates a woman’s chances of having breast cancer in a five-year period and over a lifetime.

But this is where it gets more complicated. While many experts agree that women at high risk should consider the medications, they do not agree on what Gail score should trigger that consideration."

One Drug's Success Story

"Nobody ever died of cancer cells," says Dr. Larry Norton at the Memorial Sloan Kettering Cancer Center. "You die of tumors."

"I've been doing oncology long enough that I've seen cancers go from incurable to curable at the right moment in history," he says. "It could happen to breast cancer in years; it could happen to breast cancer in days to weeks. We don't know when it's going to happen."

Friday, February 20, 2015

Sorry, Honey, My Warranty Is Expired

I haven't had strep throat since I was in middle school, the year I had my tonsils out. The surgery was preceded by seven (yes SEVEN) bouts of strep and/or tonsillitis, so at the first sign of health, I was scheduled for surgery. I didn't have another surgery (or even hospitalization for any reason) for TWENTY years.

Then, as Chris says, I started falling apart. Ha. Hahahaha.

Case in point: I had chemo this week, which was fine. I even went for a hike on Wednesday. I was feeling great, I thought!

Then that night I was hit with a fever, chills, and inability to swallow without feeling like I was being stabbed. I've got fatigue that has me winning sleep trends on my Up24 (not so much actual fitness, alas). And a self-diagnosis of strep (confirmed as "likely" by my oncologist's assistant) led to my second Z-Pack in as many months.

I no longer have the fever or chills, but am still holding on to the fatigue and sore throat. Why is there no place to put "I'm sick" in my Up tracking? Instead, my "smart coach" keeps encouraging me to take more steps if I want any chance of reaching the suggested 10,000 per day. I'm not just sitting on my ass because I'm lazy, guys.

Still, I am the worst at being sick, whether my smart coach is goading me to move or not. I want to go to yoga, but won't, because I don't want to get anyone else sick lest my antibiotics haven't kicked in yet. Also, who am I kidding? Down dog when you have a headache is decidedly NOT fun. I should probably just take a nap, but keep thinking there must be something I'm not marking off my to-do list that I should while I've got a quiet day.

I want to do a tutorial on my eyebrows but haven't figured out the logistics yet. I thought about talking about capsule wardrobes, but here's the gist: I cleaned out my closet, which isn't all that exciting. I love to cook and was thinking of doing a series on foods to help you get past chemo but then our stove broke (again) and I haven't had an appetite this week because it is so very, very painful to swallow. Maybe I'll do a series on smoothies?

Or maybe I will just nap, after all.

Kidding. Off to the grocery store. Because someone in this house still has an appetite.

Tuesday, February 17, 2015

Around the Web

To all of my friends and family who've stepped in the last couple of weeks, the last few years to help me out and entertain my son and feed our family (sometimes all three things at once), I'm not sure I say it often enough: from the bottom of my heart, thank you. You are exactly why our family has been able to make this chemo thing work while also raising a baby/toddler/preschooler and having a spouse who routinely travels for weeks at a time for work.

Yesterday was a chemo day for me, but also a holiday, which meant Quinn's school was closed. And it's one of those times that Chris is out of town while I need my infusion. I didn't exactly know how I was going to pull it off, and came close to rescheduling my appointment til later in the week. But it turns out I just had to ask. My friend Julee could step in to take Quinn for a few hours. "No problem!" she said. Quinn could play with her son, one of Quinn's best friends, while I went to my infusion center and received treatment.

Then, in the afternoon, Quinn's friend Sydney's dad brought her over for a playdate that relieved me of my obligation to sit hunched over on our hardwood floor, crashing cars with my boy. They even brought popsicles! Sorry, rest of the country where you currently feel like a popsicle.

Thank you, friends, for keeping me afloat.

Again, I've been a little remiss in posting this little series, but that's what single parenting has done to me. But hey, our laundry is folded and our teeth are brushed and I even sent my manuscript to my agent last week. So some things are getting accomplished.

To Wit: The FDA Approves Another Treatment for Metastatic Breast Cancer

"The drug’s efficacy was demonstrated in 165 postmenopausal women with ER-positive, HER2-negative advanced breast cancer who had not received previous treatment for advanced disease. Clinical study participants were randomly assigned to receive Ibrance in combination with letrozole or letrozole alone. Participants treated with Ibrance plus letrozole lived about 20.2 months without their disease progressing (progression-free survival), compared to about 10.2 months seen in participants receiving only letrozole. Information on overall survival is not available at this time."

And the Mayo Clinic is Planning Trials on a Vaccine for Triple Negative B.C.

Oh, how my fingers are crossed on this one.

"Donna Deegan, a WTLV- and WJXX-TV news anchor, is a three-time breast cancer survivor. She was diagnosed with the cancer at age 38.

"For women with triple negative breast cancer, if this works, it could be a game changer," Deegan said.

Perez said that in the past, she was not optimistic about the chances for success of a breast cancer vaccine. However, that has now changed."

Harnessing the Immune System to Fight Cancer

"But scientists recently discovered that cancer takes a page from Harry Potter: It puts on a kind of invisibility cloak.

"Cancer can keep the immune system from recognizing that it's bad and keep it from attacking itself," Brahmer says.

Now scientists have found a way around this.

"The breakthrough is in therapies called 'checkpoint inhibitors,' " Brahmer says."

"A new device that delivers cancer drugs directly into tumors without relying on perfusion via the bloodstream, could increase life expectancy for patients with pancreatic, breast and other solid cancers, say researchers."

3D Printed 'Phantom' Tumors Could Help Deliver Radiation More Precisely

"Scientists in London are using 3D printed replicas of tumors and organs, called 'phantoms', to show how drugs will pass through tumors and give them a better understanding of how that will be replicated in individual patients."

Certain Her-2+ Tumors May Only Need Chemotherapy (sans Herceptin)

"A study suggests that HER2-positive breast cancer tumors with high levels of tumor-infiltrating lymphocytes had a lower risk of the cancer coming back (recurrence) when treated with chemotherapy alone compared to HER-positive tumors with low levels of tumor-infiltrating lymphocytes treated with only chemotherapy.

This means that HER2-positive breast cancers with high levels of tumor-infiltrating lymphocytes might be able to be treated with chemotherapy alone and avoid Herceptin (chemical name: trastuzumab)."

I had ZERO side effects from Herceptin, so I was happy to take the kitchen sink approach. But I know what a pain it is to continue on infusions for a year (or longer for those with metastatic disease). Would you skip Herceptin if you could?

A Promising Drug Target for Certain Breast and Ovarian Cancers

"The Food and Drug Administration's recent approval of the drug olaparib for ovarian cancer patients with inherited mutations in the genes BRCA1 or BRCA2 came as welcome news to the thousands of women now eligible to receive it. A new study by Dana-Farber Cancer Institute scientists indicates that the pool of patients who can benefit from the drug is potentially much wider -- and offers a ready means of identifying them.

The study, published in the journal Nature, found that an enzyme called polymerase q (or POLQ) is the active agent in the protein "pathway" that olaparib targets within tumor cells. The finding suggests that breast and ovarian cancer patients whose tumor cells carry abnormally high levels of POLQ are likely to respond to the drug -- and that POLQ itself is an inviting target for future therapies."

Lastly, This is Making the Rounds in My Circles: Would You Try It?

One naturopath's take: "Although it is clearly uncomfortable not eating for a total of 72 hours, the research is indicating that this is a worthwhile sacrifice. The discomfort from hunger will actually decrease the severity of the side effects from the chemotherapy. It is also important to keep in mind that this starvation state is triggering a powerful metabolic shift in your cells that protects your cells while making the cancer cells more vulnerable to the chemotherapy."

I am fairly strong-willed, but I don't think I could voluntarily go without food for three days. What about you? Would you try this? Have you? Or is this guy a total coconut?

Monday, February 16, 2015

A Collaboration: Project Heart Yourself / Infinite Hope

In October, my friend Jenny (hairstylist extraordinaire, the beautiful and talented Jenny Strebe of Confessions of a Hairstylist and founder of Project Heart Yourself) sent me a text message asking if I'd like to work with her on a jewelry piece -- something for breast cancer awareness (but enough with the pink ribbon already). Something a little more honest and special that would really pay tribute to women at all stages of treatment and at any stage of this disease. I love Jenny's style and her commitment to empowering women, and I jumped at the chance to work with her.

As we started brainstorming, we quickly found we were on the same page, and pretty soon had a design in place, a simple infinity symbol, standing for the infinite hope that carries us through some of our darkest days. The Infinity necklaces are now available for purchase here/here, and the proceeds will go to a local organization helping moms who are going through cancer treatments.

A photo posted by Jen Campisano (@jencampisano) on

Project Heart Yourself is all about empowering women to love themselves, something I've realized is infinitely important to getting through cancer. As Jenny would say, "Loving yourself is one of the hardest but most paramount aspects to life. You do not always have control over what happens to you, or in you but with grace you can accept it and learn to continue living a beautiful life."

If you're interested, you can read the very kind words Jenny's blogger had to say about me here. It had me blushing just a bit, and then nearly in tears. I'm so honored to be a part of this project.

Monday, February 9, 2015

How Could You Forgive Your Body for That?

I'm not always the nicest person. Ask Chris. Ask my mom. Isn't that always the case with the ones who know us best? They see the worst of us, and -- how lucky are we -- they love us anyway.

When Quinn and my mom, who's living with us while she gets her things unpacked and gets settled in her new apartment, are both talking to me at the same time, for example, as if the other isn't in the room, instead of handling it the way my more mellow-mannered younger brother probably would with a, "Hey, hey, one at a time guys!" and a smile, I'm quick to snap: "WHAT! What do you even want!" at whichever one of them is closer, usually my mom.

Mother's Day 2012 - with my mom & an unhappy Quinn (sadly, the only photo I could find of all 3 of us together)
With Quinn, I retract a bit, explain how we use our polite words when we want to interrupt when another person is talking. (Luckily, he's not old enough to throw it back at me that maybe I should try my polite words, too?) With my mom, I ask if I can please have some of the wine she's pouring. Maybe it'll help?

To be fair to myself, Chris also left town for a month last week, so I've been a little on edge while I shift the burden and get used to running the household on my own instead of sharing the duties like we usually do. Remembering trash night, cooking dinner and doing the dishes, doing a dry run of our taxes so we have an idea of what's left to spend on landscaping this year, and planning Quinn's birthday party is taking its toll, people.


I had a call last week with a woman who's writing a piece on me, who -- bless her -- sat down and read through my entire blog, all three-and-a-half years of it, over the previous week. She asked me a couple of straight-shooting, hard-hitting questions, including how I managed to love myself through cancer, which is, after all, a disease of one's own mutated cells. How did you forgive your body for that? she wanted to know.

I'd never even thought of it like that, I don't think. My body might have made a mistake, but I always blamed cancer, as if it were an entirely separate entity. As if it were not me. I knew I needed to be kind to myself to start healing, but I never thought of it as forgiveness. What was there to forgive? I've always been strong, capable, resilient. Even when I had moments of self-pity, even when I asked my therapist why me? I still knew cancer was not my fault. After all, why anyone?

What I have a harder time with is being gentle with myself (and clearly those around me) when I'm feeling pulled in too many directions.

I have a hard time finding patience. I am irritable because my routine has been knocked askew. Because I still have chemo next week and a scan on Quinn's birthday -- on his birthday, for chrissakes! -- next month. I'm angry because a friend was told she had no evidence of disease and two weeks later they found metastases in her brain. I take it out on my poor mom, who's just moved back to town because of a break-up.

And then sometimes I see her in all her fragility, starting over again in her mid-sixties, transferring jobs and setting up another new apartment after a lifetime of being a military wife and starting over every two to three years, trying to stick to a strict budget but still wanting to treat me to breakfast because that's what moms do, and saying things like, "I can't imagine not working. What would I do with my time?" I wonder if she means these statements as a premeditated response to anyone who might judge her (although I don't think anyone is) since she probably needs to work. I'm sure she doesn't intend to criticize me not working, but I still question whether it's a jab at my decision to stay home.

There's another of my faults, if you're counting: I analyze things to shreds.

So this is how it goes with my mom and I until we find our groove around each other again. There is some friction, so we have more wine than either of us is used to, we let Quinn be a buffer between us because it's hard to be tense when you're racing monster trucks, and I make a joke about my younger brother being our mom's favorite to diffuse any tension and also because he might be. He's all of our favorite.

These are the things I need to forgive myself for, the things I need to work on, the things I have any control over, even when it feels like I don't. How I act, how I react, how I interact with the ones I love the most. I could do better, and I'm always striving for that. In the interim, I love myself anyway. Because we should, and because -- if we're lucky -- our parents do.

But cancer? That wasn't me, wasn't my choice, wasn't my fault. What about you? Did you blame yourself for your cancer? How have you employed forgiveness in your own life? Has it helped you heal?

Monday, February 2, 2015

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."