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:

Cancer isn't everything. Even on post-treatment days when the nausea feels overwhelming, tomorrow will be better. #truth #optimism

A photo posted by Jen Campisano (@jencampisano) on Sep 9, 2015 at 12:01pm PDT

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)?

What I Did On My Summer Vacation

Summer's are for leaving Phoenix as much as possible, it's true, but we are outdoing ourselves this year. Quinn is fond of saying we have to leave or we'll burn up (which might not be far off of the truth). One friend on Twitter asked me if I was moving based on this photo I posted about leaving northern California.

Flamingo Hotel (aka the Dirty Bird), Santa Rosa. Leaving town today and I'm not sure when we'll be back, which is weird for me... but must be completely surreal for my husband, who's called this town home for 34 years.

A photo posted by Jen Campisano (@jencampisano) on Aug 13, 2015 at 8:59am PDT

No, is the answer. We don't have any plans to move anytime soon. As much as I love northern California, we were there to say farewell to my husband's childhood home, not put down roots (although I have to say those Santa Rosa roots look good on us).

In Santa Rosa, we cried and reminisced and told stories about my mother-in-law's giant heart and proclivity for ice cream and possible hoarder tendencies. We hugged family and old family friends and I tried not to think of how many memorials I've attended in the last several years (too many). We packed up memories and memorabilia stored in a house full of love and a lot of pigs (we could have started a pig museum). We sent a few items with sentimental value home to Phoenix and helped Chris's brother get the house ready to be sold. We said good-bye.

Before Santa Rosa, Quinn and I traveled up to Seattle for some healing time in a place that always soothes my soul, with people who never fail to fill our hearts to overflowing. Chris had a work trip to Mexico so I took the opportunity to leave town as well. We hiked to a waterfall where Q accidentally took a dip in a creek and told me the water was "as cold as that time we went to the snow with Grandma Maryann!" How's that for the opposite of Phoenix?

We rode the ferry up to Vancouver Island, where we built castles out of shells and identified whale bones on the beach and made brownie sundaes with Chris's Aunt Kathie (who always knows how to cheer us up).

Photo taken by Quinn!

We went to the top of the Space Needle, and I fell in love with my home state all over again. I drank a lot of coffee (I've heard it's good for the liver). And we roasted marshmallows to make s'mores and celebrated my best friend Alana's birthday as she and I realized we've been leaning on each other and reading each other's minds for more than two decades now. 

I came home practically begging Chris for a place in Seattle (even despite this article). He said I just need to sell my book. I'm working on that. 

After a blissful week in the northwest and an emotional week in Santa Rosa, we drove south east, my husband tells me, to Sacramento for my college friends' reunion -- which this year included 25 of us, eleven of whom were preschoolers ranging in age from eleven months to five years old. It was blissful in its own way, filled with the giggles and cries and overall adorableness of children who are forging the next generation of friendships amongst my tribe. It's pretty special to see.

I've been absent here because I've been really present among some of my favorite people, something I've learned the importance of over and over again the past four years. There is nothing quite like bookending a memorial service for your mother-in-law with separate visits with your best friends and their children for helping your heart heal.

I am so lucky to have such special people in my life (and fortunate that I've been healthy enough and have the means to travel to see them). I hope I don't take that for granted. I hope you all know how much joy and peace and promise you bring to my life. Thanks a million times over for that.

We got home Sunday night, in time for me to return to reality (and chemo) yesterday. As I put it on one Instagram post, "Home from a beautiful, soul-restoring trip to California that broke our hearts and then mended them in the most beautiful way, surrounded by the love of family and friends who are basically family. We are so blessed."

And today, I got to see Quinn off to his first day of his last year of preschool. Maybe it's the steroids, but I was pretty choked up this morning. I am so grateful to be here, to witness this. Four years ago, when I was diagnosed (cancerversary coming up tomorrow), I didn't quite think it would be possible. I repeat: I am so very lucky.

Let's Talk About Sex (After a Cancer Diagnosis)

“If you’ve had chemotherapy, your sexual function has been impacted.” -- Dr. Sage Bolte

Most of us are pretty reluctant to talk about sex and intimacy in the wake of a cancer diagnosis. We think we should be focused on getting rid of cancer, or staying alive, so quality of life issues often take a back seat to the urgency we feel to be well. During active cancer treatments especially, sex is probably the last thing on many of our minds.

But at some point, most of us want to touch and be touched again.

I talked to one friend recently, who was diagnosed with breast cancer when she was twenty-five. She is in remission, but takes ovarian suppression medications as well as an aromatase inhibitor. She isn't even thirty and she's in menopause.

She described it as “life-altering,” to go from being a 25-year old with a healthy sex drive to basically not thinking about it for long stretches of time, and then only because she would start to feel twinges of guilt for physically ignoring her live-in boyfriend (whom she describes as a saint).

"It's never addressed," she said. "Oncologists don’t typically bring it up, unless you have the courage to talk about it first, and it’s hardly a comfortable topic. It’s mind-boggling."


Dr. Bolte, who spoke at the conference I attended at AstraZeneca about intimacy issues and about depression and anxiety after cancer, says this hesitance to discuss our sexual selves with our care team is unfortunate, because there are solutions.

One of the primary reasons patients give for not bringing up intimacy with their doctors is they fear there's no way around the loss of it during (and even after) cancer treatments. But sexual dysfunction is one of the top quality of life issues concerning cancer patients. And according to Dr. Bolte, the incidence of altered sexuality can persist for years.

Obviously, my experience is with breast cancer, treatments for which can cause a litany of side effects, including:

• mouth sores
• fatigue
• dry, cracked skin and mucous membranes
• often, loss of or damage to a major sexual organ (breasts) due to surgeries and radiation
• vaginal stenosis (narrowing) due to chemically-induced menopause
• hair loss
• weight gain (or loss)

Other cancers can lead to similar side effects, and my guess is that no one who's been through cancer treatments has been left unscathed.

In addition to debilitating physical effects are the pschyo-social and emotional ones. Partners often take on the role of caregivers, and it can be tough to transition between the caregiver/patient and lover relationships. It can also be tough to maintain a sense of peace about your body when you might feel it betrayed you by "letting" cancer happen. Or you might be self-conscious about a new appearance.

After active treatment ends, for those of us who are lucky enough to be able to move on to targeted therapies, sexual function may lag behind. According to Dr. Bolte, most of us want healthy, active sexual relationships, but many are reluctant to bring up the topic with our healthcare providers. Not helping is that most oncologists are just as reluctant to bring it up with us, their patients. 

So what can you do? What are the solutions?

• Discuss your concerns with your doctor. If not your oncologist, then maybe your gynecologist who may be able to recommend strengthening exercises or non-hormonal lubricants that can help. There is also this, which "can be done in lunchtime." How's that for innuendo?
• Talk to your partner about expectations. Sex during chemo is probably not a priority, but maintaining intimacy should be. Hold hands or cuddle during marathon episodes of Orange is the New Black. Make time for date nights (or afternoons, since us cancer patients are often exhausted by the end of the day.) Dr. Bolte said one couple she knows of started reading erotica to each other and arrived at their next therapy appointment with shit-eating grins on their faces.
• Communicate about desires and needs. This seems so straightforward, but things change so much after a cancer diagnosis. I'm noting it again because it is so true for me: we are often exhausted at the end of the day. Rethink when you might be more willing to connect. And certain areas might be too sensitive or painful to touch. Share these things with your partner before you're fooling around so that feelings don't get hurt if you recoil when your scar tissue accidentally gets grazed. 
• Go back to some of the basics. Make out like you're in your parents' basement in high school. Wear pretty lingerie if that's your thing. Write each other love notes. Take a bath together. The goal doesn't need to be sex as you once knew it. 

For additional resources, Dr. Bolte recommends the following books: Men Cancer Sex, Women Cancer Sex, and Sex Matters for Women: A Complete Guide to Taking Care of Your Sexual Self.

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.

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."

New Delivery System for Chemo Drugs Shows Promise

"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?

My Head Is So Far Up in the Clouds...

My head is so far up in the clouds and I don't even have a fun excuse as to why.

There is nothing quite like getting hit with a sinus infection and recovering from chemo to start off a week. I sort of feel like my head is floating above my body somewhere, but somehow it is still throbbing. Unfortunately, it is not too detached for that. Plus, I may have given myself whiplash with the intensity of some of these sneezes. My neck is sore, my eyes feel like they're swimming in slime, even my teeth hurt.

I'm not trying to complain, so much as set out a list of reasons why our house looks like such a wreck (sorry, honey).

A friend recently wondered at how I get everything done, and then I look around my house on a day like today, when I've barely left the couch except to drop Quinn off at school, and I want to set the record straight: I do not even come close to getting everything done.

There are piles of shoes by the door, beds unmade, laundry that needs to be folded, laundry that needs to be washed, and I have no earthly idea what we're having for dinner tonight, but a rotisserie chicken is sounding pretty accessible right now.

I want to do a post about my intentions for the new year, about goal-setting and sugar-reducing and my feeble attempt at the Whole30 thing. But that might have to wait until these antibiotics kick in. Right now, I need a nap (or a cup of coffee).

{5 days ago, when my head was in the clouds for a far different reason}

I just wanted to put it out there that some weeks I do have a decent amount of energy, and I take advantage of it when I can. On those weeks, I go hiking, I go to yoga, I sometimes even fold laundry. I spent a good amount of time over the holidays not thinking a single lick about cancer. I was able to put it so far to the back of my mind that I didn't even care that I had too many glasses of champagne on New Year's Eve, watching Fergie ring in 2015 with some truly awful performances in Times Square. I am so grateful for that. Really.

But on weeks like this one, I barely get out of my pajamas for days in a row. There is no balance, there are just ups and downs. This week, cancer is once again at the forefront, if only in side effects from treatment. At times like these, I remember that I'll feel so much better in a couple of days. (This too shall pass.) I think I said it here before, but the wise words of my sister-in-law bear repeating: You can get through any moment, and eventually, those moments add up and you're on the other side of whatever awful thing you were facing.

The fog will clear, my energy will return, and with any luck I'll be able to breathe through my nose again.

Around the Web

Yesterday was a chemo day, plus I found out I have something in my left hip called iliopsoas tendonitis  as well as shallow hip sockets, for whatever that's worth. Basically, between the two, I'm on track to feel like an 80-year-old woman this week. On the plus side, both chemo and my faulty hip will force me to take it easy for a few days, so there's a chance I could get my holiday cards out the door this week. See? There's always a silver lining.

At chemo with my friend Sandi last summer (because I didn't have a more recent chemo pic).

Here's some of what caught my attention on the internet this week. There was a lot of information released because of the annual Breast Cancer Symposium in San Antonio, so I apologize for the length of this edition. I hope you find it useful.

Some Evidence That Radiation May Be Over-Prescribed

"...older women with early stage breast cancer may be enduring the pain, fatigue and cost of radiation treatment although it doesn't increase life expectancy."

And Some More...

"Studies in recent years have shown that breast cancer patients who undergo lumpectomies can safely opt for three weeks of daily radiation therapy instead of the traditional five."

Radiation May Be Particularly Dangerous for Those with BRCA Mutations

"Young women at high familial risk for breast cancer may see an even greater risk from diagnostic scans that expose them to chest radiation, including mammograms, researchers found.

Any diagnostic use of radiation before age 30 increased breast cancer risk by 90% for carriers of BRCA1 or BRCA2 mutations..."

But Good News: Common Chemotherapy NOT Found to be Heart Toxic for Patients with BRCA Mutations

"'We found that mutation carriers who received anthracycline treatment do not have an increased risk of cardiac dysfunction, and that reduced cardiac function was very low in all patients, suggesting low risk of cardiac problems late after chemotherapy treatment,' Barac says. 'Our results are applicable only to patients without significant cardiovascular risk factors, particularly hypertension.'"

Oh, the Irony (I Found My Tumor While Breastfeeding My Son)

"Breastfeeding could cut the chance of breast cancer by up to one fifth, a major international study has found.

Research on more than 750,000 women found it was a “powerful strategy” to reduce the risk of cancer, especially the most aggressive types of disease."

A Surprising Possible Target for Combating Triple Negative Breast Cancer (TNBC)

"A University of Colorado Cancer Center study being presented at the San Antonio Breast Cancer Symposium shows that triple negative breast cancer cells process tryptophan [yes, the stuff in turkey] to promote survival while traveling through the body in order to seed new tumor sites."

And More Headway in the Fight Against TNBC

"'The median survival for patients with triple-negative breast cancer is approximately one year,' Nanda said. 'We need better treatments for this disease. The promising activity of pembrolizumab seen in PD-L1-expressing, triple-negative breast cancer is exciting, and certainly worthy of further investigation.'"

Long-Term Study of Tamoxifen as a Preventative Measure Shows Promise

"Taking the cancer drug tamoxifen for five years drives down the incidence of breast cancer in women at high risk for the disease by close to 30%, researchers have found. And the medication's protective effects against breast cancer appear to last, unabated, for as long as 16 years after a woman stops taking it, a new study says."

But Those Study Results "Come with a Few Major Caveats"

"With such long follow-up, there has not yet been a meaningful difference observed, either way, in breast cancer-related or overall mortality. Worrisome, too, is a slightly increased number of estrogen-receptor negative tumors observed in the tamoxifen arm of the study."

Afinitor Does Not Improve Progression-Free Survival for Advanced Her-2+ Patients

"Adding everolimus (Afinitor, Novartis) to trastuzumab (Herceptin, Genentech) and paclitaxel did not significantly improve progression-free survival as a first-line treatment for women with human epidermal growth factor receptor-2 positive (HER2+) advanced breast cancer, according to the results of the BOLERO-1 trial. Novartis announced the results at the 2014 San Antonio Breast Cancer Symposium."

Like Watching the Grass Grow

As I mentioned back in June, I've been working on growing out my hair. And I haven't been updating you as promised because it would literally be like watching grass grow. Except, you know -- hair.

At this rate I'm going to be forty-two by the time I have enough to donate. But it's been six months so I thought it would be a good time to finally show you the progress I am making. (Here's where I started, if you're interested.) Also, I went a little darker for the fall, if you're keeping tabs on that sort of thing.

Another thing about this process: I schedule my hair appointments to coincide with my scan results. Am I the only one? Just in case I have to go back on broad spectrum chemo-chemo and lose my hair again, I don't want to do anything to it and be told I'll lose it a few weeks later. So I had my scan on November 10th and my hair color appointment two days later. My next scan will be in late February or early March, so expect another update then -- at which point maybe it'll finally be past these darn ears of mine.

(Also, our family photos are courtesy of Jenny at Jennifer Bowen photography, and I am absolutely thrilled with them.)

Plus, a gratuitous photo of Quinn, just because that expression. He will probably get everything on his Christmas list because of that face. What can I say? Santa is a softie.

Around the Web

I took a break from the internet for most of last week (with the exception of this post)...

So this happened today. World, meet Luna.

A photo posted by Jen Campisano (@jencampisano) on Nov 11, 2014 at 1:55pm PST

Between chemo last Monday, Thanksgiving on Thursday, and family in town, I hardly turned on my computer. My dad and his wife came to visit for the week. We only debated a little bit about the recent elections, we ate turkey and pumpkin pie until our bellies ached, and we watched football (where Chris and Quinn cheered for the "Go Niners" and the rest of us celebrated the Seahawks).

And we adopted a dog.

It was exactly the week I needed. How about you? How did you spend your holiday?

Now to panic since it's December and I haven't started Christmas shopping yet. In the meantime, here's what caught my attention on the web over the past couple of weeks.

How Some Breast Cancers Become Resistant to Targeted Drugs

"The team determined that the tumors had developed six different mutations that led to drug resistance. But the result of all these mutations was the same: The tumors had lost the ability to express a protein called PTEN.

The findings suggest a new approach for combating drug resistance by taking advantage of the fact that not all PI3K inhibitors work using the same mechanism."

And What if We Could Drain Cancer's "Fuel Tank"?

They're not talking about dieting to starve a cancer cell.

"Blocking cancer cells' ability to generate the energy they need to grow and divide is an exciting new avenue for future cancer treatments. This research suggests that MCT inhibitors may be particularly effective against breast cancer 'stem cells' that can resist other treatments, and could prevent the cancer from coming back - but further work is needed to find out if these drugs can help patients. Cancer Research UK is funding trials of these drugs in a range of cancer types."

What if We Could Track Circulating Tumor Cells in the Bloodstream?

Before they settle down and form tumors, before they metastasize.

"Once they identified the cancer cells, the researchers were able to separate them from normal cells. This ability to isolate, culture and grow the cancer cells will allow researchers to zero in on the cancer cells that matter to the health of the patient. Most circulating tumor cells may not metastasize, and analysis of the cancer cells could identify those that will."

Are Preventative Surgeries Worth the Risk?

"For Mimi Cavalheiro, who is genetically at risk for both breast and ovarian cancers, the question of a diagnosis is not an “if” but “when.”

Cavalheiro is one of about 100 Bay Area women between 35 and 50 years old with the BRCA1 or BRCA2 mutations who are participating in a clinical trial that is examining changes in cardiovascular health, bone density, sexual function, quality of life and other effects on women who go into early menopause."

And, Yet... New Analysis Shows the Risks for a Secondary Breast Cancer are Significant in Those with Gene Mutations

We're talking about the BRCA1 and BRCA2 gene mutations again here.

"Women who are genetically susceptible to breast cancer and develop it in one breast are at higher than average risk for a tumor in the other breast, and that risk may increase as time goes on, according to a new analysis."

Why Does Immunotherapy Work in Some Patients But Not Others?

Memorial Sloan Kettering scientists may have some answers.

"'For the first time, it might be feasible to develop a reliable diagnostic test to help guide treatment decisions by predicting who will respond,' says physician-scientist Timothy Chan, who led the research. The findings could also inspire new research that potentially may lead to more-powerful immunotherapies for melanoma as well as for other cancers."

A Test for Mutations in Blood Cancers Could Provide More Treatment Options

“This is really the way of the future,” Steensma said. “We are going to be practicing medicine not based on how cells look under the microscope, but rather on what makes a disease tick.”

Not Bald Enough

Last week, I stumbled across this article about Joan Lunden daring to appear bald on the cover of People magazine. How incredible of her, I thought. I wish her the absolute best. She has a rare and aggressive form of breast cancer and certainly has a grueling few months ahead. I applaud her for doing what is right for her and not shying away from the iniquities of this disease.

At the end of the article, it noted that Ms. Lunden would be kicking off Breast Cancer Awareness month (that's October, in case you've been living in a cave) with a special on the TODAY show. Specifically, it said: We're kicking off Breast Cancer Awareness Month on Oct. 1 on the TODAY plaza — and Joan wants you to join! If you have undergone treatment that resulted in hair loss, please join us for what we hope will be an empowering moment for women. Email todaypinkpower@gmail.com for more information.

So I did. I emailed todaypinkpower and -- after praising Ms. Lunden for her bravery -- gave a brief snippet of my history, that I was a 32-year-old new mom when I was diagnosed with Stage 4 breast cancer, that I've been bald twice, that I'd love to participate in an empowering moment for women (never mind that men get breast cancer, too).

To my surprise, I heard back pretty quickly. My email from todaypinkpower said, in part: We are looking for survivors or women living with cancer to share in our bold and bald empowering moment. Would you be interested in joining Joan on the TODAY Plaza next Wednesday, October 1? Where are you located? Could you make it to our Rockefeller Center Plaza in New York City? She then asked for more information: my age, location, and phone number. Oh, and could I also send a current photo.

In my crazy head, I started wondering how we could get coverage for Quinn if I was going to the TODAY show NEXT WEEK. What would I wear? Could we afford a plane ticket? Would NBC pay for that? I was getting ahead of myself, I knew, but I was caught up with the idea that a platform as huge as TODAY might start to pay attention to stories like mine. At the very least, I thought the photo might be used in a montage of some sort about women who've "undergone treatment that resulted in hair loss." An "empowering moment," if you will.

So I sent in this photo, from earlier this year. I admitted it wasn't the most recent and made a joke about what a camera hog my 3-year-old is. (He's not.)

And then I got another reply email from todaypinkpower. It said: Thank you so much for your response. We are specifically looking for women who can be bold and bald on the plaza for an empowering moment to support Breast Cancer. (emphasis mine)

My heart sank. I'd been bald twice. That wasn't enough? Had I not been through enough shit to merit the "bold" stamp of approval from TODAY? I wasn't welcome because I wasn't BALD? What. The. Everloving. Fuck. I was saddened and livid and frustrated and then humiliated that I'd gotten my hopes up. I checked the message boards for the online support groups I belong to, and I wasn't the only one.

You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents, and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I'm on. A lot of us with Stage 4 have our hair.

That doesn't mean we won't die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.

I tried to look at it from a producer's point of view. A sea of bald heads would surely make a far greater impact on television than a group of people wearing pink. And of course, this seemed to be more about ratings than actual support or empowerment or -- God forbid -- education. That didn't make me less upset about it.

Maybe this was about solidarity with Joan Lunden. I tried to put myself in her shoes. How would I have felt if a bunch of women with hair came out to support me while I was bald? Oh, wait. I experienced that. It felt fucking amazing.

Fueled by our frustration and heartache and, yes, fury over the responses we were getting because we weren't BALD, a lot of us wrote todaypinkpower back to explain how gutted we felt by her response, by TODAY's approach to October, by the fact that a lot of women are getting left out of the conversation, by the media perpetuation that you must LOOK sick in order to BE sick. Here we go again and the month hasn't even begun yet.

In what I think counts as a teensy tiny victory, on Friday many of us non-bald "metsters" received follow up emails from todaypinkpower letting us know they would still love to have us join after all, and if we were interested, here were the updated details. We just had to wear our pink.

I get it that this is television. I do. And not everyone wants a segment on metastatic disease with their morning coffee. It's not entertaining. I know that. I live it.

As much as I love New York, I won't be able to make it to the Plaza next Wednesday. But I would fly on the next plane out to NYC if they'd talk about stories like mine for even a minute.

So Now I Feel Like a Slug

I started Monday morning with a hike up Piestewa Peak, where I climbed 1.2 miles uphill to the summit just in time for sunrise at 6:19 a.m. I'm not normally up quite so early, even on mornings when I hike, but one of our smoke alarms was running low on batteries and alerted us with a persistent beeping that woke Chris and me up at five o'clock. While Chris pulled every one of the devices out of their sockets, I left the house to get some exercise. This photo is from my iPhone. This is where Phoenix outshines DC.

I got home from my hike before Quinn was out of bed, so I even had time to shower and savor my first cup of coffee, all thanks to our faulty smoke-alarm batteries. Then Quinn woke up, I made breakfast, packed his lunch, tried to brush his hair (unsuccessfully), and eventually got him dressed in the correct dinosaur shirt before heading to preschool.

After drop-off, I headed to chemo.

So now I feel like a slug.

I'm nauseous and mopey and feel like my limbs are stuck in buckets of cement, my head in a vice.

This morning, Quinn wanted me to build him a transformer house out of pillows. He was not amused when I asked if I could sleep on one of the walls. He's at school again today, while I'm parked on our couch trying to slog my way through a to-do list that mostly requires making phone calls or filling out disability paperwork, and even that feels like it might need to wait until this fog lifts a little.

On days like yesterday and today, days I still have every three weeks, I'm reminded that although time is so very important, that we never know how much of it we've got, that despite myself I've felt a certain gotta-race-against-the-clock alertness since my diagnosis and I desperately want to enjoy every moment -- I must also take the time to recover in order to get back out there and grab life by the horns or just build a fort with my son. There is no magic way around it. I am knocked out, rolled over, flattened by this fatigue (FLATigue, as my friend Sarah calls it), and my only way through it is patience and time and more patience and a little bit of anti-nausea medication and the knowledge that this, too, shall pass.

So this picture from the top of a mountain is a reminder to me that it's worth it, that on my best days I still have energy for early morning hikes or taking Quinn to swim lessons, that there are better days just around the corner. There are better days ahead.

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.

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.

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. 

This Crushing Fatigue

I had chemo last Monday. Every three weeks, indefinitely. 

Last Wednesday, I went to a yoga class and ran into one of my regular instructors in the studio's lobby. She asked how I was doing. "Okay, just a little exhausted from chemo this week," I told her. "Oh, is this just maintenance stuff?" she asked me. "Sort of like that," I replied. Most people don't understand that my hair could be growing, I could be in remission, and still need chemo. Most of the time, I don't get into it.

Until scientists find some better detection methods and can tell me definitively that there are no breast cancer cells left, I will probably be on some sort of drug to keep this at bay -- just in case. As well as I'm doing right now, I am not willing to risk taking this safety net away, even if I have been flattened -- crushed -- by the fatigue of it.

According to the website www.chemocare.com, cancer-related fatigue is common: 

What is fatigue?

Fatigue can be confused with tiredness.  Everyone gets tired.  In fact, it is an expected feeling after certain activities or at the end of the day.  Usually, we know why we're tired and a good night's sleep will solve the problem.  Fatigue is less precise, less cause-and-effect.  Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.  It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or longer).  Fatigue can have a profound negative impact on a person's ability to function and quality of life.

What is cancer-related fatigue?

Cancer-related fatigue (CRF - sometimes simply called "cancer fatigue") is one of the most common side effects of cancer and itstreatments.  It is often described as "paralyzing."  Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep.  It may not end - even when treatment is complete. 

What I'm on is not as harsh as the toxic chemo-chemo I used to be on. This is no Taxotere or Carboplatin. But it is still cumulative (or I am just getting older and less adept at recovery). After 14 months of Kadcyla and almost three years since my diagnosis, I am wiped out. 

I don't have the words for how tired this chemo makes me. I was never much of a morning person before cancer, but now I am groggy until mid-afternoon. I am cranky and ornery and feel decades older than my thirty-five years. I feel like I'm moving through mud. I am irritable and short-tempered and I cry at the slightest frustrations because I don't have the energy for a more measured reaction.

Anemia isn't to blame; my blood counts consistently look okay, which was confirmed again this morning. I'm getting what most experts say is enough sleep per night: about 7.5 hours, give or take, depending on steroids or Quinn's sleep gymnastics or my anxiety levels. It's too hot to hike, but I'm still making it to a fairly intense yoga class three times a week, most weeks. (Though sometimes I think I go to yoga to spend most of my time in child's pose, resting on my sweaty mat.) I finished my 39.3-mile walk.

{Photo credit}

Am I overdoing it when I feel well? Is it being a parent to the energizer bunny? Is it the heat of the Phoenix summer? Am I not drinking enough water? Enough coffee? And the worst: is the cancer growing again?

I'll feel better in a couple of days. I'll make it to yoga again this evening and spend less time in child's pose than I did last Wednesday. Quinn and I will have the day together tomorrow, inventing new ways to beat the heat (I'm thinking ice-skaing lessons for both of us might be in order soon). We'll go to California for Chris's 20-year high school reunion.

And then I'll have a week and a half of feeling nearly normal before this cycle begins again. Just enough time to almost forget how sluggish I'm feeling now. 

Are you sidelined by chemo-related fatigue? How do you combat it? What other side effects do you take on in order to keep on keepin' on?

Around the Web

Here are the articles that were passed along to me this week. Thanks to my husband, Chris, and my friends Andrea and Kathryn for sharing them. I had chemo on Monday, so I've been in my typical fog since then, a fog that isn't helped IN THE SLIGHTEST by it being 114 degrees outside. So we're heading out of town--again--this weekend, just a couple of hours north of here to a place where there are natural springs and waterfalls and it will be twenty degrees cooler than here. So, mid-nineties, but with WATER. Which sounds downright magical at the moment.

{Photo credit}

A Better Way to Diagnose Cancer?

"The current study puts immunosignatures to the test, evaluating the technique’s ability to identify multiple disease types. The team first “trained” the system to calibrate results and establish reference immunosignatures using 20 samples each from five cancer patient cohorts, along with 20 non-cancer patients. Once reference immunosignatures were established, the technique was tested in a blind evaluation of 120 independent samples covering the same diseases. The results demonstrate 95 percent accuracy. . . .

Specifically, in one experimental trial, researchers were able to detect and distinguish a complex, heterogeneous disease – stage IV breast cancer, relative to four other cancers and healthy controls. In the second trial, 14 separate diseases were distinguished from one another, as well as from healthy controls, through immunosignatures. Among the cancers tested were three different stages of breast cancer, four different brain cancers, two pancreatic diseases, ovarian cancer and two different blood cancers."

Targeting the "Seeds" of Metastases

"If perfected, this technique could eventually allow doctors to do the same: use cancer cells isolated from patients' blood to monitor the progression of their diseases, pre-test drugs and personalize treatment plans accordingly."

And Some Positive News on the Clinical Trial Front . . . 

(from April)

. . . Led to This

"Investigators for the biotech say they tracked a 33% improvement over placebo in disease-free survival."

They are looking for FDA approval in the first half of 2015.

As always, if you have anything you think I should add here, please let me know.  

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.