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

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"

The Daily Show
Get More: Daily Show Full Episodes,The Daily Show on Facebook,Daily Show Video Archive

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? 

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.”

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.