Monday, December 29, 2014

Good News, Bad News

I don't even remember what the particular news items were, but the other day I said to Quinn, "Go ask Daddy if he wants to hear the good news or the bad news first." So now when Quinn has something to tell me, he'll say, "Do you want to hear the good news?" Followed by something like, "I built a treasure box for my rocket ship!"

With him, there's no bad news.

This is a post about some bad news, though. I've hesitated to write about this because it's not cancer-related and I know I'm inviting so many opinions by opening up about it. But, me being me, I wrote about our dog adoption in this space already, so I figured I owe you guys an update.

Also? The last few weeks have been pure Christmas chaos abundance, with a train ride to the North Pole (where we blamed there being no snow on global warming, and I'm not sure Quinn bought it because it was 29 degrees out and that might be the coldest he's ever been), a cookie exchange party we're still eating the remnants from, a couple of holiday open houses, a family limo ride courtesy of Chris's aunt to view Christmas lights, waffles with Santa at Quinn's preschool, and Quinn asking Santa for exactly two things: a menorah to light candles for eight days at our house and a remote control spider to scare his mommy. Guess which one Santa delivered? 

I hope you all have had equally abundant holiday seasons. I am so lucky to get to experience this time of year, this life I've got with Chris and Quinn, and this was the first Christmas since 2011 that I didn't wonder if it would be my last. Instead, I probably tried a little too hard to put in place holiday traditions that would make the season as magical as possible for my little man, abandoning ship here because there just was no time for blogging after I figured out what to do with the elf every night. 

I might skip the damn elf next year.

Back to the pup. A couple of weeks after we brought Luna home there was an incident that made it clear she shouldn't be in a house with a preschooler (or a cat, for that matter). She was extraordinarily sweet in so many regards and attached herself to me pretty quickly, but I couldn't be as vigilant as I would have needed to be to ensure everyone's safety. It broke my heart even after only two weeks, but the rescue organization took her back earlier this month.

Quinn says our house is boring without Luna, which is true. The good news (if I can spin it) is that our cat has come out of hiding after spending more than two weeks hidden in a closet in the back of the house. And the rest of us are once again in the market for a (child- and cat-friendly) dog. 

Friday, December 19, 2014

Getting Off the Hamster Wheel

I came down with a cold this week -- or maybe last, but it really hit this week as I was recovering from chemo. Perfect timing! Then Quinn spent Tuesday night feverishly whimpering in bed next to me. He woke up sick to his stomach Wednesday morning, which made two of us. The last few days have been kind of a blur. In traditional denial-ist fashion, I've been telling myself I just have terrible allergies, even as my head has spent most of this week feeling like I got run over by a reindeer.

I managed to make it to yoga earlier in the week (or late last week?), hoping to sweat out some of the gunk that's been plaguing me. I ran into a friend and mentioned that I've been feeling like I'm on a hamster wheel lately, with the decorating and shopping and cards and laundry and cleaning and baking and school activities and I just hadn't been feeling very festive. "Oh my God, me too," she said.

She told me she'd been feeling the same thing but had had a session with a local woman who is part therapist, part energy healer. And I might normally roll my eyes, but this friend is especially grounded and I've had some pretty remarkable sessions with people doing energy work myself. Also, my friend told me something that really struck home. Her therapist/healer suggested looking at the items on the hamster wheel from a slightly different perspective, shifting her gaze just a tad so things no longer feel like chores. Hearing this, it was as if I was suddenly given permission to be okay with the chaos, to embrace it even, to possibly find some kooky sort of joy in it. I feel like my friend got a two-for-one deal because this was EXACTLY the nudge I needed to get my head out of my ass.

Then, another woman I didn't know too well -- but who was also rejected by The TODAY Show before she was invited (and attended) on the Plaza with Joan Lunden -- passed away this week. We'd sent each other congratulatory notes on our TODAY appearances. A few weeks later, she suffered a stroke from which she never really recovered. Despite all that, in October, she tweeted this, which is a perfect little nugget of wisdom. Thank you, Annie.

Tuesday, December 16, 2014

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."

Wednesday, December 10, 2014

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.

Monday, December 8, 2014

Around the Web

Call me naive, but I didn't know it would be quite this hard to introduce our cat to our dog. The cat has spent the better part of the last week holed up in a closet in one of our bedrooms. But Luna-Dune, as we've all started calling her, is fitting in with our family nicely. Most importantly, she appears to have sated my urge to have/adopt/somehow acquire another child. This is exhausting enough, thank-you-very-much.

(But look how cute she is...)

When I wasn't busy Instagramming photos of my dog, here's what caught my attention on the internet this week.

Breast Cancer Vaccine Shows Promise (but Phase II Trial Will Exclude Advanced-Stage Patients)

This makes me both hopeful and terribly sad that metastatic patients won't be included in the next phase of research.

"If we give the vaccine to patients at the beginning of treatment, the immune systems should not be compromised like in patients with metastatic disease," Gillanders said. "We also will be able to do more informative immune monitoring than we did in this preliminary trial. Now that we have good evidence that the vaccine is safe, we think testing it in newly diagnosed patients will give us a better idea of the effectiveness of the therapy."

Did You Hear What Melissa Etheridge Said About Breast Cancer?

That her words "stirred debate" is a bit of an understatement, at least in the breast cancer community.

"Singer Melissa Etheridge's comments that breast-cancer genes can be turned on or off by diet are being challenged by doctors and others, who say they are hurtful and could mislead millions of people."

And Speaking of Genetic Screening...

"Most patients with triple-negative breast cancer should undergo genetic testing for mutations in known breast cancer predisposition genes, including BRCA1 and BRCA2, a Mayo Clinic-led study has found. The findings come from the largest analysis to date of genetic mutations in this aggressive form of breast cancer. The results of the research appear in the Journal of Clinical Oncology."

And Speaking of Triple Negative Breast Cancer...

"Scientists at A*STAR's Genome Institute of Singapore (GIS), in collaboration with local clinicians and colleagues in the USA, have identified a biomarker which is strongly associated with triple negative breast cancer (TNBC), a highly aggressive carcinoma that often has early relapse and metastasis following chemotherapy. The newly identified biomarker, a gene called RASAL2, provides a target for developing new therapeutics designed to treat this often deadly disease."

Saying Good-Bye Far Too Young

{photo credit}
Another mother gone too soon because of metastatic, triple negative breast cancer.

"And who are the brave ones in the country's breast cancer conversation? They're so quiet as to be all but ignored. They're the women with metastatic disease, especially the young women I get chemo alongside at Dana-Farber Cancer Institute in Boston, the ones who really may not see their children graduate from kindergarten, let alone high school."

Another Reason I'm Lucky: Where I Live

"In the United States, 9 out of 10 kids diagnosed with acute lymphoblastic leukemia will live. In Jordan, the survival rate is 16 percent.

And while cervical cancer patients have a five-year survival rate of over 70 percent in countries like Mauritius and Norway, the rate in Libya is under 40 percent.

That's the sobering news from the largest cancer study ever published. It surveyed more than 25.7 million patients and reveals a huge gulf in cancer survival worldwide."

3D Mammography Improves Cancer Detection in "Dense" Breasts

"Our findings are extremely promising, showing an overall relative increase in the cancer detection rate of about 30 percent," Dr. Skaane said. "Stratifying the results on invasive cancers only, the relative increase in cancer detection was about 40 percent."

Getting Off the Couch Could Save Your Life

"Women with breast cancer who engage in physical activity, even if at moderate level, have a lower risk of death, cancer-specific or not; according to new research presented yesterday at the 2014 World Cancer Congress in Melbourne, Australia."

The Daily Show Takes On "Fracking for the Cure"

Friday, December 5, 2014

Is All of This Perfectly Normal?

This last week has tested every bit of my patience with Quinn, and my patience has failed that test on more than one occasion. I have yelled (granted, there was either a hot glue gun or a dog lunging after our cat involved). I have taken toys away, placing them in a pile on our kitchen counter so Quinn could see exactly how many times he didn't listen to me that day. I have threatened to call Santa.

The thing is, I think I know what's going on. First my mom came to visit. Then my dad and his new wife were here visiting for a week over Thanksgiving, a week in which Quinn hardly went to preschool and was doted on and played with fairly nonstop ten to twelve hours a day. Then they left.

I do my best to play and play and play, but I also have meals to cook, laundry to fold, and a new dog to try to befriend to our cranky, panicky cat. I am no match for Grandma Sue or Grandpa and YaYa. Quinn has reacted pretty much the way he does when Chris leaves for Africa: petulant and ornery and just sort of perfectly three, a phase that typically lasts about a week post-departure.

Lately, if Chris or I ask Quinn to stop doing anything, his inevitable response starts with: "But I was just..." to the point where I told him that the word "just" wasn't allowed in our house any more. I will put a toy on the counter, so help me god.

There's a chance this all has nothing to do with our company leaving, and could just be Quinn picking up on our collective insanity this week -- the seemingly natural craze that comes with this time of year, with ordering holiday cards and shopping for gifts and Chris finishing up his semester at ASU and decorating and holiday parties and all of the STUFF. Not to mention the damn elf on the damn shelf. Also, we added a family member this week. It's a little nutso around here.

I've been waiting for my sweet boy (the one who isn't quite so cantankerous) to make a full-time appearance again. Then last night, he did, and it left me sobbing in bed next to him. We were lying down, talking about our day, our week, and how we'd both like to be better, to do better. I told him about all the things he does to make me proud: introducing himself ("I'm Quinn James Campisano, Quinn James Campisano, Quinn James Campisano...") to a new friend at swimming, being exceptionally sweet with our pets, and cleaning up his toys when it's time for dinner.

He asked to cuddle, then changed the subject somewhat abruptly.

"Mom, when I get older, I don't want to die."

"Honey, you don't have to worry about that for a long, long time." I stroked his hair off his forehead. After several identical interactions over the last week, though, I've started wondering if this is something we need to talk about more deeply. Where is this fear coming from?

Photo c/o Jennifer Bowen Photography

Is this normal 3-year-old stuff? I tried to explain that that's the beauty of this life, that we should enjoy it while we're here because eventually (a long, long time from now, we hope), we all have to stop living. 

"But dying means you're no longer here, and I don't want to go anywhere else," he insisted.

"Some people believe that when you die, you're reunited with your loved ones who've died before you." I tried.

"But I love you and daddy and Loki and Luna! The people in THIS house. I WANT TO STAY HERE." He was getting worked up.

"Honey, we're here right now, and that's what matters, right?" I hugged him a little tighter.

He continued. "When you die, what if we go different places? I don't want you to go anywhere. I don't want you to go away from me." And then I lost it. Usually I can hold back my tears in front of him, but not after that. The tears could not stop themselves. "Mommy, don't cry," he told me. 

I took a deep breath and pulled myself together. "Let's just stay here together as a family for as long as we can, okay buddy?" This seemed to satisfy him and alleviate his worries -- for last night, anyway. 

I did not know parenting was going to be this challenging. These conversations are not getting any easier. Have you talked to your children about death? Am I over-thinking this because of my own situation? Has cancer ruined my perspective? Is all of this perfectly normal? 

Monday, December 1, 2014

Around the Web

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

A photo posted by Jen Campisano (@jencampisano) on

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.”

Saturday, November 22, 2014

A Request for Rainbows

My friend in hospice died last week.

My heart hurts.

I'd met Renee at a support group meeting just over two years ago. At the time, she was in her first round of treatment for early-stage triple negative breast cancer. She had a new baby, so we bonded over being diagnosed so soon after our pregnancies. I was sporting a cute pixie cut then, being six or seven months out from my first round of chemo. She was excited to see how quickly her hair might start to grow back.

{"Prayer Bear" made by Renee}
Last summer, she sent me a note telling me her cancer had recurred, in her lungs. With triple negative breast cancer, treatment options are limited. Hormone suppression doesn't work because the tumors aren't fueled by hormones. Targeted treatments like the ones I've been on aren't effective because the Her-2 receptors aren't over-expressed like mine are. There is chemo, there is surgery, and there is radiation. And while there are lots of different types of chemo, when one stops working, the next is less likely to work, until none do.

Renee died the day after I met with my oncologist and he told me that if my clean scans continue for another year, we might be able to think about taking a break from my medication. It's a huge maybe. A lot can happen in a year. But the possibility exists.

And yet. My heart hurts.

I made lasagna and took it up to Renee's husband and little girls on Tuesday, because food is what you take to those who are grieving, right? But even as I spoke with him in hushed tones about how he was holding up, about how his girls were (as the oldest one played in the other room and the younger one napped), I mentioned that the gesture seemed empty. A pan full of food wasn't enough, but what could be? He told me his oldest daughter cries for her mom every night. Lasagna can't fix that.

My mom was here visiting, so I left Quinn with her while I went up to visit Renee's family. Her mom was also visiting, helping with food and laundry and caring for those girls in the wake of losing her own daughter. I couldn't help but think of what my mom -- my family -- would go through if I died.

People talk about survivors' guilt, and it's not that, exactly. I don't feel guilty, so much as hollowed out, utterly gutted by each loss. And scared. I am scared of dying of cancer.

I wailed as I drove away from Renee's house. I miss our late night chats -- about how we'd be the anomalies, the ones to watch our kids grow up, the ones to survive twenty years with this diagnosis. The end came quickly for her, so there's mercy in that. Things were going relatively well, and then they suddenly weren't. A month later, she was gone.

Wailing seemed appropriate.

Renee called me a few weeks before she died, from the hospital. She told me she was at peace with whatever was coming, and I remember feeling disappointed. Please don't give up, I wanted to beg her. But what do I know about where she was coming from? I have not been steps away from hospice. I have not been on four different chemotherapies in a year, only to have progression into my brain. I have not been where she was, faced quite the anguish she must have been facing.

And I know she didn't give up so much as let go. There is a difference. There is only so much a body can handle. I wanted to hug her, wrap her in love and let her know everything might be okay. Which I guess is what she was telling me when she called me that day. She was going to be okay.

Still, my heart. It hurts.

Another friend sent me a note last week to let me know her dad's cancer treatment was changing, and also that a mutual friend's cancer was back. It was a rough week, even with my good news. Is it just me? Is cancer everywhere in your world right now, too? I hope it's not as ubiquitous as it seems from my perspective.

My scan was clean. I am absolutely grateful for that. One friend told me, "Well, you're the rainbow!" Perhaps there's some of that. But I could use some more rainbows, if you've got them? Some more good news to balance some of this grief?

My heart could use it.

Monday, November 17, 2014

Around the Web

Despite my clean scan, it was a rough week in my cancer world (more on that later, but as one close friend of mine put it, "I'm feeling really oppressed by cancer lately.") I'm still sorting out my feelings from all of the news and my appointment with my oncologist. In the meantime, here's what caught my eye on the Internet this week.

"Panel Laments Lack of Options for Advanced Breast Cancer" (As Do Advanced Breast Cancer Patients)

"The lack of options for advanced breast cancer has created a sense of urgency for high-quality research and clinical trials to address a multitude of unanswered questions, a guideline panel concluded.

Though treatment advances have extended the duration of survival, advanced breast cancer remains almost uniformly fatal."

But at least there's a sense of urgency for high-quality research.

Meditation May Help Heal On a Cellular Level

Excellent timing for that meditation group I just joined today

"Now researchers in Canada have found the first evidence to suggest that support groups that encourage meditation and yoga can actually alter the cellular activity of cancer survivors.

Their study, which was published in the journal Cancer last week, is one of the first to suggest that a mind-body connection really does exist."

And Not to Go Total Hippy, But There Was This, Too

(How cannabis was used to shrink an aggressive brain tumor.)

"Our results showed that the dose of irradiation we used had no dramatic effect on tumour growth, whereas CBD and THC administered together marginally reduced tumour progression. However, combining the cannabinoids with irradiation further impeded the rate at which tumour growth progressed and was virtually stagnant throughout the course of the treatment. Correspondingly, tumour sizes on the final day of the study were significantly smaller in these subjects compared with any of the others."

Understanding Anti-Estrogen Resistance

Potentially groundbreaking research out of the Department of Defense.

"Dr. Cook's research suggests the potential for clinical benefit for patients with ER+ breast cancer by combining HCQ with anti-estrogen therapy. An ongoing BCRP-funded clinical trial (; NCT01023477) examining the effect of tamoxifen and HCQ in ER+ breast cancer may provide further clinical evidence to support this new treatment modality."

And a Potential "Kill-Switch for Cancer" From the Department of Energy

"A study conducted in part at the Department of Energy’s SLAC National Accelerator Laboratory has revealed how a key human protein switches from a form that protects cells to a form that kills them – a property that scientists hope to exploit as a “kill switch” for cancer."

Bringing Awareness to (and Removing the Stigma from) a Lung Cancer Dx

{photo credit}

"Tori Tomalia, a mother of three young children from Ann Arbor, Michigan, was diagnosed last year with stage IV lung cancer. She was only 37.

“I actually thought it was impossible for a nonsmoker to get lung cancer at my age,” she told NBC News."

Tori is a friend, and I'm thrilled to see her doing so well. November is Lung Cancer Awareness Month.

Wednesday, November 12, 2014

The Busiest People Ever

"We are the busiest people EVER!" Quinn announced the other day.

We were driving home after preschool pick-up, and I'd asked him about his day. As usual, he told me he "played and played and played!" And then, in an adorable pattern I've noticed lately, he's starting to ask things like, "How are YOU, mom?" or "How was YOUR day?" Our conversations are becoming two-way streets, even if those roads often lead to tales about dragon-sauruses who've turned into trolls.

I told Quinn I'd had a "doctor's appointment" (my CT scan), lunch with my friend/book editor, and that we'd gotten good news that day. Just in case you're not on FB/Twitter/within a few blocks of my home where I spent Monday squealing like an excited pig over the news, my oncologist called with my scan results: it was clean. This marks one year of No Evidence of Disease.

We celebrated as a family Monday night, cheers-ing our glasses of wine to Quinn's milk. The twitching in my right eyelid that's been plaguing me since mid-day Sunday has almost stopped. For now, I'm taking a break from my nightly dose of Xanax.

But I've been circling back to Quinn's comment about how busy our lives are, and wondering if we're over-scheduled. I try to give us ample downtime (see: days in front of the TV post-chemo), but I also try to accommodate Quinn's requests to spend time with friends, introduce him to new activities, and maintain a semblance of routine. We still go to swimming once a week. We just planted our fall garden, since that's what you do when it's still 85 degrees outside in November.

On Tuesday morning, we went to our friends' house, where we walked to the nearby Veteran's Day parade. That afternoon, another friend dropped her son off for a few hours so she could make it to a meeting (school was closed). By bedtime, Quinn was fried, and it showed.

I laid down with him as he fell asleep, a habit we're still clinging to. He wrapped his arms around my arm, holding my hand to his chest as he nodded off. My heart tightened. We try to protect him against everything I'm going through, to keep our anxiety away from him, to not talk about potential outcomes around him, but it's impossible for some of it not to seep into our daily lives. And kids pick up on so much. This strong, brave boy, who is exhausted from the hectic flow of our lives, has already had to know too much, sense too much, experience too much.

So, with my good news and the holidays approaching (because when could be a better time for trying to slow things down, amiright?), I'm going to work on making our lives slightly less busy, slightly less anxiety-ridden, slightly less scheduled and see what happens. The flip side of that coin is I'm looking at adopting a dog, though, so maybe we will still be the busiest people ever, just with more slobbery kisses.

Monday, November 10, 2014

Around the Web

I had a CT scan this morning, so now I wait. The official line that the technician gave me (and all the patients he sees, I suspect) is that it'll take two to three days to hear from my doctor's office. If I'm lucky, my oncologist will call earlier than that (if I'm luckier still, with good results). I'm meeting with him Wednesday morning, so in any case, I'll know by then.

As my friend Joanna reminded me, as a wise man named Tom Petty said about waiting...

A Device for Watching Metastases IN REAL TIME

This both fascinates me and terrifies me at the same time (knowing it is what happened in my body). But kudos to the scientists who are making it possible to better understand this process--and, ultimately, how to stop it.

"This close-up view allowed the pair to see that the tissue attempted to surround and contain the cancer cells. Unfortunately, some of those cells escaped and began to burrow in to a vulnerable point along the vessel. After a while the force from the artificial bloodstream was great enough to pull the cell into the vessel completely and flush it along."

"Medicare-funded breast cancer screenings jumped 44 percent from $666 million to $962 million from 2001 to 2009, yet those added costs did not improve early detection rates among the 65 and older Medicare population, according to a Yale School of Medicine study published recently in the Journal of the National Cancer Institute."

{photo credit}

"Nearly 25 percent of all breast cancers among premenopausal women occur within two to five years following a pregnancy. These postpartum tumors are more likely to spread or metastasize to other parts of the body, leading to an increased risk of death.

"Unfortunately, these are young women who have just had children. All breast cancer deaths are tragic but the loss of a young woman who is also a mother is so devastating for families and has a profoundly negative societal impact," said Rebecca Cook, Ph.D., assistant professor of Cancer Biology at Vanderbilt-Ingram Cancer Center, Nashville, Tennessee.

While more research is needed, Cook said the results suggest that using a MerTK inhibitor in conjunction with other therapies could be helpful.

In the meantime, Cook said women who have recently given birth need to be vigilant about breast health."

No Surprise Here: Cancer's Costs Run Deep

"What’s clear is that employment and money concerns haunt many people with all kinds of cancer, nation-wide, during and after treatment. A malignant diagnosis can lead individuals to experience disappointment at work, earn less, retire early and, as a consequence of medical bills, reduce their home and leisure spending."

Predicting When Cancers Will Spread to the Brain

"Up to 30 per cent of breast cancers will eventually spread to the brain, often many years after the first tumour was treated. Tackling secondary brain tumours with radiotherapy and surgery has limited success, with most women surviving just seven months after the brain metastasis has been diagnosed."

Surprise Discovery Makes Way for Possible New Treatment for Breast Cancers

"Researchers at Sydney’s Garvan Institute of Medical Research have found that calcium-binding drugs commonly used to treat people with osteoporosis, or with late-stage cancers that have metastasised, may also benefit patients with tumours outside the skeleton, including in the breast."

Thursday, November 6, 2014

Enough Brave to Go Around

I suspect by now you've heard of Brittany Maynard. The 29-year-old newlywed recently made the very public decision to end her life before incurable brain cancer could make that decision for her. If you hadn't followed her story, you can read more about it here.

I've been debating writing about her life, her choice, her death here because I wasn't sure whether I agreed with what she did -- even if I 100% support her RIGHT to choose. After all, who am I to judge? Who are any of us, if we haven't been in the same situation? As my dad liked to tell me when I was young (and very often I had no inkling what on earth he meant): judge not lest ye be judged.

And yet, I couldn't help thinking of all of us who are fighting so hard to stay alive, or participating in clinical trials to further advance research for the next incurable patient who comes along. People lauded Maynard's choice as "brave," which left me wondering what that made the rest of us, those of us who dig our heals in until the bitter, ugly end. Those of us suffering through treatment after treatment in the hopes that one might work. Were we not brave?

Then I realized -- had an epiphany of sorts -- one has absolutely no bearing on the other

We can all be brave (or not; a diagnosis of cancer does not automatically turn one into a superhero, and some days, brave has nothing to do with the decision to get up and keep fighting. No--some days, that decision is pure stubbornness, or a deep-rooted responsibility to those who most depend on you to get your ass out of bed, or a little seed of hope that today might be the day they announce a cure). However you look at it, there is enough brave to go around. There is no brave shortage for which we need to conserve.

Putting on our bravest faces

Brittany's bravery was in her voice. Her bravery was in speaking up for the right to choose how you leave this world when you are told you will be checking out very soon. Tick-tock, tick-tock, tick-tock.

I was also diagnosed with incurable cancer, but I have not exhausted my treatment options. I do not have tumors in my brain threatening to take away my ability to make independent decisions. I am not having seizures that leave me unable to express myself. 

I repeat: I am one of the lucky ones. 


On Tuesday this week, a dear friend was admitted to hospice care, somewhat unexpectedly, as her cancer has taken a rather rapid turn for the worse. Radiation to treat her inoperable brain tumors (from metastatic breast cancer, not brain cancer) isn't having the desired affect. Someday soon, she will leave her two little girls, aged two and four.  

I cried until I couldn't cry anymore that night, and it had nothing to do with the elections.

This friend of mine told me she's at peace with whatever lies ahead for her. I can't quite wrap my brain around that idea -- of peace in the face of death. For me, it's an idea that no longer fits, like a sweater I accidentally put in the dryer. While I don't understand my friend's acceptance of her fate, I can find a form of bravery there, too. She has come to the end and -- still, she is bravely forging ahead to whatever might be next. My friend is a Christian, and I'm certain she would not choose the path Brittany Maynard did, even if it were an option in Arizona. 

Instead, hospice (from what I understand) provides comfort in the form of spiritual counseling to the extent one needs/requests it, social services for the family being left behind, and palliative care to keep the patient as comfortable as possible for however long it takes. In hospice, treatment for the disease itself is over. This process of dying can take weeks, or it can take days. With Medicare, hospice is available to any patient whose physician certifies that they have six months or less to live.

My friend will spend this time -- however much of it she's got -- with her little ones and her husband standing by. She'll be in and out of consciousness, in and out of pain, in and out of breath, until there is no more and she is just out. 


I have a scan on Monday. I expect good results (hope for them with every breath I take if I'm being honest), but I still filled my prescription for Xanax. I'm still jumpy with every weird pain -- the pinching where I probably pulled something under my arm in yoga, the place where my sternum cracks like knuckles when I stretch a certain way, and the headaches that are most certainly from stress and grinding my teeth at night but a little seed in my brain wonders what if anyway.

And all of this has me thinking: I don't know what choice I would make, if my options had run out and my possibilities were between a slow expiration and a quick end to suffering -- mine and my family's.

As my friend Nancy Stordahl wrote this week: "I remember when my mother was extremely ill, lying in a bed at a care facility and unable to do much of anything at all anymore. She was dying from metastatic breast cancer and it was a slow, painful and agonizing experience for her and for my family to witness. I remember there were moments when I wished the end would just come for her because she was suffering so much. I also remember immediately feeling guilty for thinking such things. I bargained with God for more time. I wanted more time; just one more day or one more night. I wanted it both ways."

I am a LONG way from that fork in the road. If and when it gets to that point, though, I really hope nobody will judge me if I move to Oregon, where I could at least get rid of my Xanax prescription.

Monday, November 3, 2014

Around the Web

I had chemo today. A friend I hadn't seen in awhile came to sit with me and catch up. She knows my upcoming scans are on my mind, and asked me if and when I'd opt to quit taking this drug, assuming my scans keep coming back clean.

But here's the deal: I don't know of any other targeted treatments, if cancer were to rear its head again. I keep looking for the research, but it's not there yet. So, even with my (relatively mild) side effects, I will remain on this drug as long as it is working or until something better comes along. A gentle reminder that forgoing treatment altogether is NOT typically recommended for metastatic breast cancer patients, even those of us who are extremely fortunate.

Here is the research I did find on the web in the last week. Have you seen anything you think I should include here? Please send me an email!

The Problem Is, I'm Not Sure This News Is Going to Make Anyone Sleep BETTER.

"According to a new study, cancerous tumors may grow faster at night, during the hours typically taken up by sleep. Their discovery may point the way toward new, circadian-aligned strategies for treating cancer."

Why Has This Not Been Done Before?

"One of the tragic realities of cancer is that the drugs used to treat it are highly toxic and their effectiveness varies unpredictably from patient to patient. However, a new “tumor-in-a-dish” technology is poised to change this reality by rapidly assessing how effective specific anti-cancer cocktails will be on an individual’s cancer before chemotherapy begins.

“This is the first time the 3-D culturing method has been used to predict the effectiveness of different drugs on tumors from individual patients,” said graduate student Alex Walsh, who has played a key role in developing the test."

New Drug Combination May Work as a One-Two Punch On Breast Cancer

"We found if you put the two drugs together, you have much better ability to kill tumors than applying either drug alone," Keri said. "That's the major discovery. Prescribing both is much better than just selecting one or the other."

And Another Promising Treatment Option for Triple-Negative BC Patients

"However, the researchers found that the biggest improvement was in women with advanced TNBC. Overall, this group of women's survival improved by almost 5 months."

Scientists FTW: Getting Lung Cancer Cells to Self-Destruct

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"The discovery, although still in its infancy, could revolutionize the way doctors approach cancer. 'Igniting the fuse that causes lung cancer cells to self-destruct could pave the way to a completely new treatment approach – and leave healthy cells unharmed,' lead researcher, Dr. Henning Walczak, from University College London Cancer Institute, explained in the press release."

Friday, October 31, 2014

The Mighty Quinn

He takes his job as Superman VERY seriously. God, I love this kid.

Thursday, October 30, 2014

Team Booby and the Beast Goes to Washington

As Breast Cancer Awareness Month comes to a close, I thought what better time to announce I'll be walking again in the Avon Walk for Breast Cancer? Because if I'm going to advocate for action, this is an act I can take. I can still walk. I can write about my experiences. If that helps one other woman speak up in her doctor's office when she might have otherwise ignored the twisting in her gut about a lump she'd found? If I can do that, I've at least done something.

I choose this walk because Avon provides funding for women who can't afford treatments. I've talked before about how earth-shatteringly lucky I am to have the insurance I do. To have friends who've told me to go ahead with treatments and I can pay them back later (an offer I haven't yet had to take). Not everyone is so lucky, and Avon helps bridge that gap. Avon also funds life-saving research, and you know how I feel about research. You can read more about their mission by clicking here.

Next spring, I'll be flying back to my old stomping grounds -- Washington, DC -- to walk with a team of women, old friends and new from all over the country, to raise money for this organization that has done so much for people facing this vile disease. While I'm there, I'm hoping I can brush up on my lobbying skills and take my message -- that this can and does happen to young people, that we need more research funding -- to Congress (starting with my state representatives, but to anyone who will listen, really).

Do you want to join us? Support our team with a donation? Make signs to cheer us along as we wind our way through the halls of Congress? We welcome the support. I appreciate it more than I can express.

This will be my 4th Avon Walk, and to date, I've raised more than $30,000 for the cause. Last year alone, our team was able to donate more than $16,000. We're hoping to blow that number out of the water this spring. If you'd like to help us do that, please click here. And thank you. It means the world to me.


Monday, October 27, 2014

Around the Web

Suddenly, it's almost the end of October. The pink parade is tapering off, and I hope starting to change directions toward a more educated discussion, toward more action, toward life-saving research. I'm back to digging up the research I can find to share it with you here, back to writing my book (seriously, honestly, I'm almost done), back to brainstorming ideas for getting our voices heard.

On that note, don't forget to vote next week. Have you heard how important it is to speak up for yourself?

Here's what's caught my attention around the web in the last couple of weeks. As always, please feel free to send me anything you think should be featured here.

Oh, Komen. When Will You Learn?

Or, why so many of us are opposed to a $100,000 donation to the largest breast cancer organization on the planet.

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Fast-Tracking FDA Approval for One Drug to Treat Metastatic Breast Cancer

"The CDK 4/6 inhibitor has already won breakthrough drug status at the FDA. The PDUFA date for palbociclib will fall on April 13, 2015, as Pfizer seeks an OK to market it for women with advanced or metastatic ER+, HER2- breast cancer."

Lung Cancer Can Lie Dormant for Two DECADES

Just in time for Halloween, this spooky story might change how we look at cancers long-term (and help explain why it is typically so much better to treat cancers early in their lifespan). 

"By the time patients are sick enough to be diagnosed with cancer, their tumors will have developed down multiple evolutionary pathways, making it extremely hard for any one targeted medicine to have an effect.

The findings show the pressing need to detect lung cancer before it has shape-shifted into multiple malignant clones."

Starving Cancer Cells (But Not in the Way You Might Think)

There is plenty of talk out there about diets and cancer (avoid sugar, eat plant-based diets, drink alkaline water, etc.) All of that is well and good and may ultimately help fuel your body to better stave off cancer to begin with.  But here is some research suggesting that cancer cells that metastasize do consume a special diet, fed by a certain protein. Scientists are looking at ways to starve those cells.

"In other words, some cancer cells are programmed to eat at home, while others have a special diet that allows them to travel to other sites. If there was a therapeutic way to stop the migrating cells from packing a lunch ahead of time, it could potentially halt their journey. Suppressing PGC-1α appears to do just that."

Immunotherapy to Treat Triple-Negative Breast Cancer

Results of a clinical trial to be announced at the annual Breast Cancer Symposium in San Antonio in December. Stay tuned...

I DO F*!king Love Science

This one is courtesy of my friend Ginelle. It's about using sound waves to open the blood-brain barrier to allow chemotherapeutic agents an entry point for a brief period in order to treat cancer that has spread to the brain (typically very difficult to do). Cool, cool stuff.

A Shout-Out to My Alma Mater

"The funds provided by the CDC will be used by the Breast Cancer Program to assemble education materials, enhance delivery of care for patients, develop individualized prescriptions for wellness and implement research discoveries for young women with breast cancer to reduce overall breast cancer death rates."

And Stem Cells to Deliver Cancer-Killing Toxins? Yes, Please.

"The study was published in the journal Stem Cells, and could represent a breakthrough in cancer research, allowing the cancerous cells to be killed and the healthy ones to remain intact, as the toxins in stem cells only target the cancerous cells. Scientists have applied for approval from the FDA to start the clinical trials of the method.

Experts praised the study as “the future” of cancer research.

“This is a clever study, which signals the beginning of the next wave of therapies. It shows you can attack solid tumors by putting minipharmacies inside the patient which deliver the toxic payload direct to the tumor,” Chris Mason, a professor of regenerative medicine at University College London, who was not participating in the study, told the BBC."

Friday, October 17, 2014

"Mommy, Are You Dying?"

I had chemo this week, on Monday. As usual, I've been in a type of fog all week. My mother-in-law is here visiting, and asked me to describe it. She wanted to understand what I was experiencing, and, by extension, what my father-in-law might have experienced when he was being treated for pancreatic cancer.

I struggled for the right words, but came up with this: "I just feel like my head is in the clouds."

It's like my thoughts are fluttering types of insects now, buzzing all over the place without ever standing still long enough for me to grab hold of one. As chemo week ends, it gets slightly better, but I'm not sure I fully recover between infusions.

And I struggle with how to manage my emotions, how to answer difficult questions, how to be a more present parent.


After chemo on Monday, I thought I could take Quinn and my mother-in-law grocery shopping with me, so that Chris could get some work done. And I don't know if Quinn is going through a growth spurt or this is just him being three or me getting chemo, but mid-afternoons have been rough for us lately. Like he needs a nap but the best I can hope for is some downtime in front of the t.v. for an hour. 

So pumped up on steroids and not yet starting to feel any side effects (I didn't think), I attempted to take my 3-year-old to the grocery store. It was exceptionally crowded at Trader Joe's, and I tried to convince Q to sit in the seat of my cart rather than get his own cart -- those miniature ones that TJ's offers for kids, which are such an adorable idea in theory. But Quinn would not be deterred, and I didn't think I was up for the fight. I told him he could have his own but he had to stay right next to me. He said he would.

I can see so many of you with kids already know where this is going.

First thing inside, right next to the salads, as I was trying to navigate the limited space between the employee restocking shelves and the elderly couple in front of me, Quinn started ramming his little mini-cart into my ankles. To his credit, he was staying right next to me. "Please stop, buddy," I asked him gently a couple of times. He didn't. My ankles were taking a beating. "Quinn, if you don't stop, you're going to have to sit in my cart," I reminded him, my voice getting more stern as I got more annoyed.

People were starting to stare at us. My son had already turned this into a game in his head. (He told me later he was just trying to be silly.)

I couldn't do it. Not on steroids, not after chemo, not in a crowded store. So I picked him up -- at which point he started screaming and kicking -- and said nevermind, we were going to skip grocery shopping that day. He kicked a shoe off in the parking lot on our way back to the car. A stranger kindly picked it up for us. He refused to sit in his carseat. It was close to 100-degrees outside, and I was out of breath from the walk to the car with a flailing child in my hands. I was also out of patience. He kicked me in the ribs as I tried to wrestle him into his carseat.

Nearly HALF AN HOUR went by. He was screaming, I was crying, cars were lining up waiting to pull into my spot as I tried to wave them along. I called Chris, who says I was so hysterical he thought I'd gotten into an accident. And then I growled at Quinn in a voice that sounded (even to my own ears) like I was possessed to GET IN YOUR DAMN CARSEAT. He finally relented. 

Thank you, chemo and steroids, for making me realize that I can, in fact, growl at this three-year-old (in front of my mother-in-law, no less). This is not the parent I want to be.

We both calmed down on the ride home, and we talked about what went wrong. Quinn and I promised each other we'd make the next day better (and we did). 

This, after my nurses cut my steroid dose in half a couple of sessions ago so that I would have less emotional reactions on my chemo weeks. The flip-side is my chemo side effects are bigger and badder, and I'm pretty certain I still have 'roid rage. 

I have felt terrible most of this week, because that's what chemo does with less medication to offset it. A doctor I follow on Twitter suggested asking my oncologist about not taking steroids at all, to take the emotional effects out of the equation. Or it could also be that, after seventeen months on this drug, its effects are building up in my system and this is just the way it is.


Fast-forward to this morning. Quinn woke up next to me (as he is wont to do; he inevitably sneaks in at some point in the middle of the night), and sweetly asked for a hug. Then we had this conversation: 

"Mommy, why are you a little bit sad?" I hadn't been feeling a little bit sad, I didn't think. Nostalgic, if anything.

"Because you're growing up so fast, and I want to remember all of it," I said and smiled at him. 

"Well, I'll remember it!" he promised. Then, this zinger: "Mommy, are you dying?"

I hugged him tighter so he wouldn't see the tears that immediately came to my eyes, the emotion that made me feel like my chest might crack in two. "Not anytime soon, honey," I told him.

"I want to remember when you die," he said. Then, "What does 'dying' mean?" Why did we have to have this conversation at 7:15 on a Friday? 

"It means when someone's not here with us anymore," I tried.

"Oh." He thought for a minute. "But I want you to stay here with me in this house forever!" 

"I want to, too, buddy. I'll stay as long as I can, okay?"


Man, it's been a long week. Here's to easier conversations and fewer side effects and being a more mindful parent in the weeks ahead. Other parents, how do you talk to your toddlers about cancer? How do you manage your side effects with children around? And, finally -- more steroids or less?

Monday, October 13, 2014

Around the Web - Mets Edition

Today, October 13th, was National Metastatic Breast Cancer Awareness Day. Metastatic (or Stage 4) breast cancer is what happens when tumor cells leave the breast and set up shop elsewhere in the body, usually the lungs, liver, brain, bones, or skin. Of course, I'm weird and had spots in my lymph nodes and spleen.

My links today are primarily focused on metastatic breast cancer. Consider this a dose of true October awareness. And if you're feeling so inclined, a great place to donate (even $5) is, which allocates 100% of its grants to funding research on metastatic breast cancer.

Want to Learn More about MBC? Here's a Good Starting Point.

"While MBC claims the lives of 40,000 women and men in America every year and 20-30% of those diagnosed with early stage breast cancer will go on to develop recurrent, metastatic disease, awareness remains low and only 7.1% of breast cancer research investments over the last dozen years were focused on MBC." 

Thank You Over and Over Again, Joan Lunden

"As hard as it would be to hear, metastatic cancer is not a death sentence. Survival rates for people with metastatic cancer varies from person to person, but a large study found that 15 percent of women lived at least five years after being diagnosed. Some women may live 10 + years beyond their diagnosis and since these studies were conducted, newer metastatic breast cancer treatments have become available. This leads us to believe that the survival rate for a metastatic patient has improved since these studies last occurred."

Pfizer Has Also Launched an Education Campaign

"FACT: Breast cancer progression can occur regardless of treatment or preventative measures taken – Half of people surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventative measures, signaling the potential stigmatization of people with metastatic disease. In reality, breast cancer can spread quickly and inexplicably, regardless of treatment or preventative measures taken."

Have You Heard? Young People Can Get Breast Cancer, Too. 

Prior to my diagnosis, I didn't realize women my age could even get breast cancer. Sadly, I was sorely mistaken. 

"According to the American Cancer Society, there are an estimated 250,000 breast cancer survivors living in the US who were diagnosed at 40 or younger, with around 13,000 new cases expected annually. While that accounts for less than 6 percent of cases in a given year, studies show that young women are more likely to have aggressive forms of the disease."

People Weigh in On What Breast Cancer Awareness Month Means to Them

Brought to you by the good people at Fred Hutchinson Cancer Research Center in Seattle. 

The profile of one woman who beat the cancer odds -- "And The New England Journal of Medicine published her story on Wednesday as a case history in the new genetic era. It concludes with a lesson that may help doctors treat thousands of patients with more common cancers, like breast and bladder cancer, and even find an alternative when a drug stops working."

Increasing Survival Time for Her-2-Negative Metastatic Breast Cancer

"As reported in The Lancet Oncology by Gligorov et al, maintenance capecitabine/bevacizumab improved progression-free survival and overall survival vs bevacizumab alone in the trial."

A New Kind of Awareness

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I'm all for wearing pink if it brings some research dollars in or encourages a young woman who didn't think breast cancer could happen to her to push her doctors for more answers. But yes, yes, yes on the gimmicky and commercial.

"For those of us who advocate for the “cause” – as I see it: the need for more breast cancer research and better care for all affected – a calendar-based theme feels gimmicky and commercial, even manipulative. At best, it’s useful for fundraising. In some parts of the world, including a few U.S. communities where believe-it-or-not stigma about having cancer persists, NBCAM may lead a few women who are hesitant to seek care for breast tumors to go and get it."

Wednesday, October 8, 2014

A Reminder that I'm a Quail (But Not Today)

In the middle of a painting session with Quinn yesterday afternoon (in which we painted heart-shaped pumpkins and talked about how to mix red and yellow to make orange), my oncologist's office called. As it happens every time I see their office name on my phone's screen, my heart leapt into my throat. Was something wrong with my blood work? I couldn't help wondering.

It was something much more benign than that (pun intended). They've scheduled my next CT scan -- how can it possibly be that time again already? -- and wanted to pass along the details, to remind me of the rules even though the routine is painstakingly familiar at this point. I know I can't eat or drink for hours beforehand. I know not to wear any jewelry to the appointment. I know where to check-in and exactly which months-old magazines will be available for me to browse while I wait. I remember.

I swirled my paintbrush in a cup of water and watched it turn a murky shade of orange. The phone call took just a few minutes, and I've learned how to bounce right back into mommy mode, how to not skip a beat in my activities with Quinn, how to put on a brave face, even when my head is already starting to swirl with what-ifs.

Quinn made a comment the other day about what it is each of us does: "Daddy goes to work, I go to school, and mommy goes to doctor's appointments! Right, mom?" Oh, buddy. I am so, so sorry.


I've had a headache for nearly a week. It's probably hormonal, or it could be that one week into October and I'm already exhausted by the onslaught of awareness (although the conversation is starting to change!) It could also easily be because I have a terrible habit of grinding my teeth while I sleep. I wake up and my jaw muscles are sore from the tension I can't escape in the middle of the night.

But I also know that somewhere around 50% of metastatic patients with Her-2+ breast cancer end up with brain metastases because chemo doesn't cross the blood-brain barrier and cancer cells do.

I read this blog post by an oncologist the other day. He talked about an evening when he was sitting out with friends and watched a falcon descend upon a covey of quail, which he turns in to a metaphor for living with advanced cancer. He also writes about how "chronic" is not really an accurate descriptor, although it has been the one my doctors have used most with me.

This line in the blog post hit home: "If you have metastatic breast cancer you are walking around under the cloud of a death sentence, any temporary stay of execution provided by fulvestrant or T-DM1 notwithstanding." T-DM1 is the drug I'm on.

And so already, my scan a month away, my head swirls with the what-ifs -- how long will this temporary stay be? When will the next big scientific breakthrough happen, and will it be soon enough? Am I strong enough to face chemo-chemo again, if this drug stops working? Why does my head hurt so much? But I have learned to reel myself in, to go back to the moment, to keep painting.

This last line from the oncologist's post also stuck with me: "And then, much more quietly than the quail and more slowly than he had arrived, the falcon took off, talons empty: not today. Not today. Not today!"