Wednesday, March 25, 2015

It Takes a Village

As my dear friend AnneMarie said to me recently, I'm spinning like a top lately. We all seem to be. Is it that it's going to be 95 degrees in Phoenix this weekend, so we're all scattering like ants about to be scorched? Is it the swarm of spring breakers here, so traffic is unrelenting lately?

Except it's not just confined to Phoenix. Life seems to be moving at breakneck speed for just about everyone I know, and suddenly I'm thrown back to Quinn's statement that we are "the busiest people EVER" and reminded that I need to slow things down a bit. I need to relax. I need to breathe.

Just as soon as I've gotten everything ready for this silent auction and yoga event on Saturday. (Will you be there?)

I'm so looking forward to being able to practice alongside the lovely Jenn Chiarelli and this entire community -- my village -- that has bolstered me up over and over again over the past several years.

Many local and regional businesses, artists, designers, healers, and yoga practitioners have donated their goods and services to make this event a huge success. I feel confident saying that before it even happens, and I wish there was a way all of you could come participate, too. I promise to take lots of photos and do my best to sum up the day while I'm still basking in the glow of it early next week.

To all of you who've donated, from the bottom of my heart, thank you. Or as I'll be saying on Saturday, namaste: I bow to the divine in each of you.

Wednesday, March 18, 2015

Around the Web: In Memoriam

The cancer community (and at least a few others) reverberated with the death of blogger and frequent tweeter Lisa Adams last week.

{photo source}
One woman posted on Facebook, “It is hard to explain to your family why you’re crying over the loss of someone you’ve never even had a cup of coffee with.” Another explained our collective crying, in part:


It's not just fear of our own mortality, of course. We also miss our friends.

I am not alone in missing Lisa's wit and quick comfort. Even in 140 characters or less, she knew how to get straight to the heart of a matter, what to say, how to be a friend, the right words to use to educate the rest of us about clinical trials, palliative care, end-of-life decisions, and how to stay positive through it all (to paraphrase: find or create a bit of beauty).

My friend Renee's birthday was this week. I miss her, too. And Brigid, and Jen, and far too many others to list here.

So, yes, we grieve for our friends. But there is a large dose of fear. We who are living with metastatic breast cancer can't help it. We wonder: when will our luck run out? How will our families cope? Will our children remember us? Have we done enough to leave our marks, given our limited time (and energy)? Will there ever be an end to this disease? Will it (could we dare to hope) be in our lifetime?

Here is a round-up of the news and research that I hope is moving us in the right direction. My hope sustains me. It brings me out of my fear. Here's to hope. And research.

A New App that May Help Advance Research

"Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit -- a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively."

You can learn more or download Share the Journey here.

Manipulating Cells' Shapes to Treat Breast Cancer?

"Changing cell shape – through mechanical, chemical or genetic means – could be a new way of assisting the body’s own inflammatory response to fight cancer.

“Interest in using the body’s own inflammatory response to fight cancer has been reinvigorated recently because of the promising results of immunotherapy. Our study further supports the need to explore the role of inflammation and cancer, in order to enhance treatments and the body’s own ability to eliminate cancer cells.”

Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said:

'Cancer cells are in a battle against the body’s natural failsafe mechanisms that seek out and destroy them. This study underlines the importance of a cancer cell’s shape in helping to tip the balance in its favour, not only dodging an immune reaction but actually thriving in response to it. It also shows that manipulating cell shape could help tip the balance back against a tumour.'”

Another Treatment Option in the Pipeline for Her-2+ Cancers

"Poziotinib is a novel oral, pan-HER inhibitor that has shown single agent clinical activity in breast cancer, gastric cancer, lung cancer, and colorectal cancer, and is currently being studied in several Phase 2 clinical trials.

Poziotinib has shown a remarkable 60% response rate in early clinical trials in patients with breast cancer who had previously failed multiple lines of treatment, including HER2-directed therapies trastuzumab and lapatinib."

Hope for Fertility Preservation in Certain Early-Stage Breast Cancers

"A major international clinical trial has found that the risk of sudden onset of menopause can be significantly reduced by adding a drug called goserelin to the chemotherapy regimen. Women who took goserelin and wanted to have children also were more likely to get pregnant and deliver a healthy baby.

'Some of the most distressing side effects of chemotherapy in young women with breast cancer are early and sudden onset of menopause and infertility,' said Kathy Albain, MD, senior author, medical oncologist and Director of Loyola University Chicago Cardinal Bernardin Cancer Center's Breast Cancer Clinical Research Program. 'These findings provide hope for young women with breast cancer who would like to prevent early menopause or still have children.'"

Lowering the Cost of Cancer Medicines

"The Food and Drug Administration approved the first copy of a biotechnology drug for the U.S. market, firing the starting gun on a new industry that could help the U.S. curb its $376 billion in yearly drug spending.

The drug is a rival version of Neupogen, an Amgen Inc. treatment prescribed to chemotherapy patients."

I never needed Neupogen. Instead, I was given Neulasta, a similar drug that is long-lasting rather than fast-acting. Both work to stimulate white blood cell production. My Neulasta shots cost something on the order of $6,000 per infusion, and I got one after every treatment on my old chemo. 

This news could save a lot of people a lot of money. 

Speaking of Money, A Little Grant to Fund Metastatic Breast Cancer

"The FDA’s recent approval of the first PARP inhibitor, coupled with current research, suggests that this new class of targeted therapy has great potential to help not only patients with ovarian cancer for whom the agent is indicated but also individuals with breast cancer. Mark E. Robson, MD, clinic director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center, presented on this topic at the Miami Breast Cancer Conference.

“It is an exciting time. We have an approval for olaparib (Lynparza) in ovarian cancer and there are active phase III studies for olaparib and other PARP inhibitors in metastatic breast cancer for patients with BRCA1/2 mutations,” said Robson."

Monday, March 9, 2015

Four

My Dearest Bugsy-Boo,

Last Friday you turned four years old. FOUR. How the heck did that happen? One minute you were my baby boy learning to walk, then you were climbing up and out of your crib with aplomb, and now you are all mud-loving, solid, strong boy, knocking me over with the force of your hugs. Saturday night as I was tucking you into bed, you asked me if you'd be three in the morning. "No, honey, you won't ever be three again," I said. And then the lump in my throat nearly swallowed me whole. Good-bye, three.


Three has been a challenge, I won't lie. But even as I write this, I can hardly remember whatever it is that I've found so infuriating. Already, I only remember you telling me things like, "Mama, when I think of hearts, I think of you." Or, "I'll go with you to keep you safe, Mom," when it's dark in the hallway. Or, when it was circle time at school and the teachers asked all of you what your favorite part of the morning had been and every other kid said playing on the playground or snack time, they told me your answer was, "Playing with my mom." Your love is my best medicine, buddy. You are my super-hero through and through.


Just the other day, on the way to your birthday party, after we'd packed the car with your confetti cake and dinosaur goodie bags to give your friends, you said, "Mommy, you're the best mommy EVER!" and smiled at me so earnestly I thought this is it. There is no greater happiness than this right here.

Your sweetness overwhelms me.


Alternatively, you say things that just about bowl me over, like when I asked you not too long ago why you were having such a hard time listening that morning and you said, "I don't want to listen to you because I just get so annoyed." As soon as I picked my jaw up out of my lap, we talked about why it's still important to listen even if you don't always like what people are saying.

Three going on thirteen. I spent the rest of that day either laughing as I retold the story or impressed by your vocabulary. Of course I think you're brilliant, but I am most proud of how much you care for the people you love, how kind and hilarious you are, how big you hug, how you don't hesitate to call me out when I'm being annoying. Pardon me, sir.



Quinn, you have such a zest for life, and I marvel at your ability to take it all in at a whopping speed, going strong and steady at least twelve hours a day, every day, without pause until you begrudgingly collapse into bed after talking me into just one more book, pretty pleeeeease. You have an insatiable curiosity about everything around you. Right now, you want to be an astronaut. You love dinosaurs and fossils (like your dad). You still love to climb--trees now, and your bed as soon as we'll flip it to a bunk bed, and the drawer pulls in our kitchen as if they're a ladder.

At night, you tell me you still have "five more energies," as part of your read me a fourth book strategy. Can I borrow some of the energies? The truth is, I feel stronger and more alive just being a part of your world. Thank you for showing me how it's done.



I am still putting you to sleep every night. I wait for your breathing to get deeper, for you to roll over onto your left side, bunny and kitty and owl and dinosaur tucked in with you, and then I sneak out if I haven't also fallen asleep beside you in your twin bed, Clifford the Big Red Dog as my pillow. You've started calling me out on it, knowing I will go into your dad's and my room to do some work on my computer, that you'll probably come in to join us at some point around midnight, and so you've started asking me if we can just start in my room instead. No, I say, let's fall asleep here first.

A few weeks ago, on a chemo day for me and when dad was out of town, you woke up as I was getting ready for bed. It was early, not even 10 pm yet. You'd had a nightmare, and your crying sounded as if you were still half-stuck in it, like the screams you wanted to scream kept getting caught in your throat. And then words started to come together, as I scrambled down the hallway to comfort you. "Where are you, Mom?" you choked through a sob, sounding panicked. Some spiral in my mind went immediately to the thought I can't leave him. This little boy needs me. I pulled you in for an embrace and said, "I'm here, buddy," over and over again until your sobs became hiccups.

Later, you told me you dreamt bad guys were taking me from you. So I promised you with all the truth I can muster and all the hope in the world, "I'm not going anywhere." For now, our luck is holding, my scans are still clean, and I am eternally grateful for these days, months, years with you.


Here's to celebrating many, many more birthdays together, buddy. (But slow down just a little, okay? We only get to do this once.)

Don't forget I love you more than anything.

Love,
Your Mama

Monday, March 2, 2015

Around the Web: Stomp Out BC Edition

There was a movement among the online breast cancer community yesterday to raise awareness for metastatic breast cancer, to call attention to a side of the disease that rarely gets talked about, to make some noise collectively. Stomp Out Breast Cancer Monday was the brainchild of Beth Fairchild (view her news clip here). The goal was to get the hashtags #dontignorestageiv #bckills and #metsmonday trending on Twitter, Facebook, Instagram, or wherever an impact might be felt.

I don't know about you, but my Facebook feed was filled with stories of women I have come to love, women who are facing this disease with so much grace it felt like my heart might burst reading through their experiences. One friend wrote: "The hardest part about living with metastatic breast cancer isn't the treatments. It's looking into my 9 year old's eyes and seeing the pain and fear there. Cancer is a thief that has robbed all of my kids of their innocence." 

Then last night, because Quinn took a weird late-afternoon nap that lasted until 8:30 pm, I was able to participate in the #BCSM Twitter chat that takes place on Monday nights. I got to say hi to some old friends (and new) as we talked about what we'd seen on social media that day: what resonated, what worked, what could be done differently in the future, what our ultimate goal even is. (RESEARCH DOLLARS NOW, PLEASE!!!) Then I found myself crying as we remembered friends who've passed away, and I tweeted this: 
I am also extra emotional because Chris is FINALLY home after four weeks in Africa, because Quinn turns four this week, and because I have a scan on his birthday. It's as if, with Chris back, I can let my guard down and let all this pent up emotion out. I no longer have to run the household by myself, be a single parent (my utmost respect and awe to those of you who are always single parents), or worry as much about the bogeyman every weird noise at night.

Today was emotional, but also inspiring in so many ways. I was proud of how this community rallied to get our voices heard. I hope I can continue to be a part of that rallying cry for many, many years to come.

Here's what else I saw on the web this week.

Basket Studies a Faster Way to Try Many Drugs on Many Cancers

"She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor’s growth."

A Test to Predict Whether You'll Survive Breast Cancer?

At this point, I'm not sure I'd take such a test. Would you?


"The test uses computerised imaging of tumour samples and statistical analysis to measure the number of immune cell ‘hotspots’.

Researchers found images of hotspots where immune cells were clustered together around breast cancer cells provided a better measure of immune response than simply the numbers of immune cells within a tumour.

Scientists at The Institute of Cancer Research, London, analysed tumour samples from 245 women with ER negative tumours.

They split women with breast cancer into two groups based on the numbers of immune hotspots within their tumours. Women whose cancers had a high number of spots lived an average of 91 months before their cancer spread, compared with just 64 months for those with a low number of spots.

The test is the first objective method of measuring the strength of a patient’s immune response to their tumour."

"This is Going to Happen in Our Lifetimes"


This is long, but so worth the watch. It gave me so many goosebumps. And of course, made me cry. Seriously, by the end I was bawling. But also, so very, incredibly hopeful. 

Tuesday, February 24, 2015

Around the Web

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

Is Mercury still in retrograde?

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

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

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

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

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

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

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

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

A Poignant Call for Action on Metastatic Breast Cancer

Watch the video, too, if you can. 


And this article is helpful for background.

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

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

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

An Interesting Way to Treat Mortality-Induced Anxiety

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

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

Chemoprevention Is Not Very Popular

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

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

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

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

One Drug's Success Story

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

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