Monday, April 13, 2015

Why DO People Get Sick?

Where to start? What a week.

We flew up to northern California on Friday to visit Chris's mom, who's dealing with advanced stage Parkinson's Disease. Together with her doctors and full-time in-home care, Chris and his brother are trying to figure out a new balance of medicines to get her back to comfortable, if not fully mobile or independent.

On the flight, I spent some time trying to prepare Quinn for what to expect. "Grandma's sick, and she might not be able to play with you as much as normal. We have to give her lots of extra love and try to cheer her up, okay? And remember that Grandma is Daddy's mom, so he might be a little sad and need extra hugs, too, just like you would be sad if I got sick."

I almost hesitated on those last words, as if I haven't been sick nearly his whole life, but I didn't know how else to say it and, after all, with the exception of the chemo itself, I haven't felt sick or had any evidence of disease in nearly a year and a half.

Quinn nodded in understanding. "I would be so sad, Mom." Then he asked me, "Why do people get sick?"

"I don't know, buddy," I said. I held his hand for awhile.

Seeing my mother-in-law was tough. How had things progressed this quickly in just three months? As I gave her a hug good-night on Friday, I started crying.

"Hey," she said. "I didn't cry for you, you're not allowed to cry for me." She was right, so I straightened up.

"That's because you're a lot tougher than I am," I cracked.

We've had moments of pure brightness this weekend, too. A superbly talented friend of Chris's took our family photos in a field off Highway 12, surrounded by wineries and a glowing sunset. I've gotten to spend an inordinate amount of time in the kitchen, because apparently when the going gets tough, I get cooking. And Quinn has blown me away with his empathy and compassion.

One of the concerns my mother-in-law expressed was that she didn't want Quinn to see her this way, that maybe we shouldn't be here because she might scare him. So I asked him on Saturday if Grandma being sick scared him, and he looked at me like it was the strangest thing I'd ever said. "No, it makes me sad," he said. "I'm sad because Grandma doesn't feel better."

Of course he wouldn't be scared. He has no point of reference to know what any of this means, or have any way of knowing that some people don't get better once they get sick. Grandma could never be scary to him. She's just Grandma, after all, not a monster under his bed. Every morning, he asks if he can go in to her room to be with her, even if we have to say no because she's getting some rest. Every evening, to Quinn's delight, we have a picnic dinner in her room.

I'm so proud of his pure and enormous heart.

Monday, April 6, 2015

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

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Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.

Wednesday, April 1, 2015

Meaning To Unite or Join Together

Over the weekend, close to seventy-five people showed up to practice yoga at an event my friend Jenn and I put together to raise funds for the Avon 39 Walk to End Breast Cancer. In addition to the donation-based yoga class, we held a silent auction, with donations from local artists, salon owners, yoga teachers, health coaches, and one of my favorite (non-local) wine makers

Jenn led us all in a beautiful flow emphasizing our prana, or life force. After all, we were there to celebrate life, to raise money that will fund research to extend people's lives and improve the quality of their lives, and help others live easier lives in the midst of a cancer diagnosis by providing meals, transportation, and treatment options. 

We were celebrating my clean scan from earlier in the month, too. I smiled with every breath and gave my little guy a kiss with every chaturanga. I am so fortunate.
{Quinn watching me practice}

In Sanskrit, yoga means "to unite" or "to join together." In practice, we often think of it as joining our breath and our movements, our minds and our bodies. But it is also about coming together as a community. About supporting each other and the world around us in little, meaningful ways. 

On Saturday, the roomful of us breathed together, moved together, sweated to some great music together and then ended the class with one of the most powerful experiences I've ever had in a yoga class. It was simple. All Jenn did was ask everyone to form a circle around me and send good energy my way. We all touched the shoulder of the person in front of us, or held hands with someone next to us, some of us praying, others of us thinking positive thoughts for healing and love and growth. We sat there for several minutes in sweaty, happy peace, and then, in tears, class was ended. 

{After class, with the incomparable Jenn Chiarelli and her daughter, Grace}
When all was said and done, we raised more than $2,000 for breast cancer research and support that day (our team is above $46,000 as of this writing). Almost equally as important, we raised our awareness of one another, of the struggles we all face, and how to ease that burden for each other just a bit, sometimes simply by holding one another's hands.

To everyone who came out to support me and this cause on Saturday, who donated your time, your art, your t-shirts, your space, or your goods or services: thank you. I can't thank you enough. I know I say it over and over, but I am so lucky. My heart is so full.

As I said on Saturday:

"Medicine is making huge strides these days, and I know chemo has saved my life.

But I also believe in this community, in the power of community. You all practicing next to me, or inviting my son for playdates when I can hardly get off the couch, or gifting me Reiki sessions because there is healing power in touch has absolutely bolstered me up over the past few years. I wholeheartedly believe I wouldn’t be where I am today if not for yoga, if not for this community, if not for all of you."

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.

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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."