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?