Wednesday, January 28, 2015

Another Doctor's Visit and a PSA

Sadly, being diagnosed with one type of cancer does not make you immune to other cancers. Radiation treatment can lead to an increased chance of thyroid and skin cancers. Certain genetic mutations mean that some women are prone to getting both breast and ovarian cancers (see: Angelina Jolie). Because my dad was diagnosed with melanoma in 2012, I am at an increased risk of skin cancer, too.

It didn't help that I lived in Hawaii from 1982-85 (although it is still my happy place, sunshine be damned), sandwiched by stints in southeastern Alabama (more sunshine). Later, in high school, I lived in Florida and spent almost every weekend at the beach or the pool. And then a bunch of us in college used to get set for spring break with weekly visits to a cheap tanning bed up the street from our university. For a base tan, we told ourselves.

Then we sat on a catamaran in Jamaica and got fried anyway because base tans don't protect against burns, it turns out. I mean, look at this godawful "tan" line of mine, circa 1998 in Jamaica. (I should have at least kept wearing the same swimsuit every day. Oh, the advice I would like to share with my younger self...)


Here's the thing: I don't remember ever wearing sunscreen until my twenties, although I must have. Right...? Mom?

These days, I'm religious about it, especially living in Arizona. And I am always hopeful that the damage hasn't already been done. Because wouldn't that be the pits? To survive stage four breast cancer only to be taken down by a wayward mole?

So when a spot on my nose started looking weird a couple of weeks ago, I made an appointment with a dermatologist. This spot was pink and looking pinker, and I strongly suspected basal cell carcinoma. Because that's where my mind goes after what I've been through. And even though basal cell carcinoma is a highly treatable form of skin cancer, it's still cancer. On my face.

Except it wasn't. It isn't. The spot on my nose is a sun spot (so damage, yes) combined with a broken capillary underneath that is making it appear pink. Nothing a little concealer can't hide, or -- if I'm feeling really vain -- have fixed by laser treatment down the road. I had a full body scan, too, and everything looks okay.

I was a nervous wreck undressing for that doctor, though. Because I couldn't help thinking about how horrible it was to hear, "You've got cancer," the first time. I was scared out of my wits about living through those three words again.

So here's my little public service announcement: wear sunscreen. Every day. Put it on your kids, too. Don't go to tanning beds, ever. Maybe cover up a bit if you're going to be on a catamaran in Jamaica and drinking too much rum punch. And -- as always -- even if you seem crazy to everyone around you, if something seems weird on your body, please please please get it checked out. Please.

You can now go back to your regularly-scheduled programming.

Monday, January 26, 2015

What is Team Booby and the Beast All About, Anyway?

Today is a chemo day for me. This means I take Quinn to school, try to get in a workout because I know I won't be feeling up for one for another few days, have a little lunch, and then drive to the infusion center about half an hour away from my house.

Kathy or Wes will gather my vitals: weight, blood pressure, heart rate and oxygen levels, and temperature. Then I'll choose which recliner to sit in and wait for a nurse. Nickole or Angela will access my port as we chat about what we've been up to the past three weeks; mostly, we talk about our kids. "Take a deep breath," one says as she swabs the raised area on my chest with an alcohol pad. "Okay, now exhale," and I do, as a needle goes in and she takes a few vials of blood to test my blood counts, my electrolytes, my liver enzymes, my tumor markers.

Mostly, my labs look good. Then they hook me up to the infusion of pre-meds. I get anti-nausea drugs and steroids. By the time these are finished, I've been at the center about an hour. Then chemo starts. It doesn't feel any different. It takes about thirty minutes. Afterward, they monitor me for another thirty minutes to make sure I don't have any adverse reactions. A week later, I have to return for more blood work, just to make sure I still have enough platelets, still have enough white blood cells, still am not anemic. Mostly, I'm okay.

My routine has been exactly the same, every third Monday and then again the next week, for nearly two years. I've been visiting this infusion center at least as often for three and a half years, since I was first diagnosed with metastatic breast cancer in August 2011.

I know how lucky I am to have the care I do. I am lucky that my infusion center visits only take a couple of hours (plus driving time), that I am able to drive myself to treatment, that my insurance pays for nearly everything, that I have a dear friend who comes to visit with me most treatment days, that my nurses know me and my family and take an interest in our lives, that my treatment is working. I could go on and on. I am so, so lucky.

Not everyone has these luxuries. Too many people don't have ready access to quality healthcare. It's too far to drive or too expensive, or the medicine doesn't work because we still need more answers about more types of breast cancer. I know too many people who've died because of this disease, and many, many more who are hoping their next chemo combination will work so they can have a few more months (or, God-willing, years) with their loved ones.

***

If you've been following my blog for a little while now, you know I've been walking in the Avon Walk for Breast Cancer since 2012. I was bald that first walk and in the middle of some intense treatment, but Avon asked me to be the Survivor Speaker at the opening and closing ceremonies. I'd never spoken in front of 3,000 people before, but that crowd of people gave me courage.

{after my first walk, Santa Barbara, 2012}
As I crossed the finish line that year, holding hands with my unofficial teammates Ginelle, JT, and Sheryl, I was overcome by such a rush of emotion that I immediately signed up for another walk in 2013. And then another.
{after my second walk, San Francisco, 2013}

Why Team Booby & the Beast?

Last year, the three women who walked with me and I decided to form a team, Team Booby and the Beast, which allows us to fundraise together or individually. Mostly, though, it is a way to show our solidarity with one another, to stand and walk and cross finish lines against this disease as a unit.

{following walk number three, San Francisco, 2014}
This year, SIXTEEN of us are on this team: Alana, Amy, Beth, Beth, Daurie, Ginelle, Ginger, Gretchen, Jess, Jessica, Kacey, Leslie, Nora, Rashmi, Shelby, and myself. We have already raised more than $20,000. We are aiming for $50,000.

We will all walk more than 39 miles over the first weekend of May in Washington, DC. We will probably wear obnoxious amounts of pink and undoubtedly there will be signs cheering us on that say things like: "Save the Tatas." I will want to remind those people that it's not about tatas, it's about lives but I won't say anything because after all they're cheering us on on a Saturday when they could be running errands at Costco.

Undoubtedly, some people will walk for a mom or sister they've just lost, and I will start crying, right there on the trail, when I see the emotion on their faces. Most likely, the volunteer who hands out shirts at the end of the walk will be surprised when I ask for a survivor shirt. "You're too young!" she'll say, and I'll think I wish.

I will be reminded over and over again how lucky I am.

Why do I walk?

I was recently asked if my fundraising was to help with my personal medical expenses. It is not. I am remarkably, unquestionably fortunate in that regard. I thank my lucky stars every single day. My husband's job at Arizona State University provides us with exceptional healthcare benefits, and our out-of-pocket expenses over the last few years have been relatively minimal.

Even after I had to leave my career as a lawyer, even given the loss of my income and the inconvenience/nightmare (depending on who you ask) about how we would repay my student loans, we are okay. We don't always repair what needs repairing in our house right away, but we have a house. In a safe neighborhood. We have two cars and a garage to park them in. Our cupboards are full. I can afford to take Quinn to school while I get treatment. This is no small thing.

We also have a strong community of friends and family who've stepped in over and over and over again to support us as we coped with the shock of my diagnosis, navigated less daycare/preschool after I left my job, my ongoing treatment, and a surprise surgery while Chris was on his way to a conference in Tennessee so that he can keep his job and we can keep our healthcare.

So I walk because I owe it to the Universe. I'm not trying to be trite or flippant. I walk because I have been luckier than I ever could have imagined, and this is the best way I know how to give back right now. I walk to help women who are not as fortunate, to raise money for research funds -- for a cure someday, yes, but also for more advancements where they're terribly needed right now, so that more women can have more years with the ones they love. So they can raise their children and love their spouses and drink a glass of wine with their best friends. So they can worry about work deadlines or meal planning or other minutiae instead of cancer and all its devastation.

Why the Avon Walk?

There are many walks/runs that support breast cancer research and education. I chose Avon because of their commitment to funding care for women who wouldn't otherwise have it. Because they give millions of dollars in grants to research. And because they didn't shy away from featuring my story of living with Stage 4 breast cancer; instead, they asked me to tell it to 3,000 people while I shared a stage with Fergie.

Since 2003, the Avon Foundation for Women has organized several walks each year in select cities around the country. The money raised funds local research facilities, services for women in underserved communities (including screening and treatment), and provides support for the families of those affected by breast cancer.

In Washington, DC, grants have been awarded to recipients that include the Johns Hopkins University (my alma mater), the Capital Breast Care Center, and Food & Friends, which provides meals, groceries, and nutrition counseling to people living with life-threatening illnesses such as cancer.

***

I know this has been the longest post ever, but this is important to me. It's my little tiny way of paying it forward. If you'd like to support me or my Team, you can click here, or stay posted for details on an upcoming fundraiser in the Phoenix/Scottsdale area this spring which will be headlined by my friend Jenn, a woman and friend whose generous spirit I strive to emulate. Stay tuned.

{my friend Jenn Chiarelli, photo source}
And thank you. I couldn't do any of this without you all, and I love you all for it.

Wednesday, January 21, 2015

A Book Update + Some Advice from Stephen King

So far, this month has not gone as I'd planned.

Side note, sort of: I finished the first draft of my book just before Thanksgiving. A friend and former colleague helped me move parts around so that it didn't take such drastic temporal leaps. It has a flow that I think makes sense now, thanks to her input and organizational skills. I no longer repeat the same stories four separate times, thanks to her keen eye and editing efforts.

Then on the advice of Stephen King (who's been somewhat successful at writing books), I decided I was going to let my manuscript sit, untouched, for six weeks. The idea being that when I came back to it, it would be with a fresh set of eyes. In theory, I'd be ready to cut out the parts that were unnecessary (no matter how brilliantly I thought I'd written them) or add details that would help carry the story forward or fix the parts that weren't so well-written.

My plan was to spend this month, after the clamor of the holidays had quieted down, to set to work on draft number two. I would be diligent in the new year, without the distraction of present-buying or cookie-making or company-hosting. Quinn would be back at preschool after an extended holiday break, so I'd have more free time. Or so I thought.

Then, I was hit with the worst cold I've had in at least a year, and just as I was recovering, Quinn had to have surgery. My little guy needed me. Editing my memoir would have to wait until both of us were back on our feet, back to our routines, backing away from the Tinker Toys and television overload.

And there went the first two-and-a-half weeks of my year.

So that's the update on my book. It's done, sort of, but still needs some reworking in spots. I've got a meeting with my agent this week, who, if I'm lucky, won't drop me just yet for still having not completed this project. Then I'm meeting with a friend next week who's also writing a book, hers on how writing helps us heal. (Here's further proof.) My friend and I are sitting down during my chemo infusion to exchange chapters, to read and critique and (I hope) praise each other's work. Please wish me luck.

Another friend recently wrote me that she doesn't set new year's resolutions so much as new year's goals, the idea being that an aspiration is somehow more achievable -- maybe because the idea of it is more approachable? -- than a strict resolution. If that's true, my goal of the early part of this year is to wrap up this project, perhaps tie it in twine, send it on its way, and pray my agent is able to find a publisher.

{1, 23}
In the meantime (or when I'm looking for inspiration), I recently read this, just started this, and am waiting on this, which was written by my sorority sister and friend Amelia, and is available for pre-order now. Amelia's book is bound to be as clever and poignant and hilarious as her blog. Go get yourself a copy! Or let me know what books you're reading lately. We'll start a club and discuss over some wine. Because another thing Stephen King told me is: "If you want to be a writer, you must do two things above all others; read a lot and write a lot." Hey, at least I'm still finding (a teensy bit of) time to read.

Monday, January 19, 2015

Around the Web

Just when I start to think most of my anger toward cancer has dissipated, a dear friend sends me an email about her colleague's wife who just learned that her early-stage cancer is now metastatic. Meaning, it has spread to bones or vital organs. It is incurable. I don't know this woman's health history, but I do know her cancer was first diagnosed in 2007. So, more than SEVEN years later, after I'm sure she figured she was done with this disease, barely a speck in her rearview mirror any longer, it rears its hideous head again.

Then I learned of another woman, a mom to two young children, who died this weekend after battling triple negative breast cancer for a little over a year. One year. If you want to contribute to her family as they try to navigate through life in the absence of their wife, mom, daughter, best friend, the link to do so is here.

And if you've ever been tempted to say (as I was and did, when I was first diagnosed) that, well, everyone beats breast cancer, please think again. As the first article in this week's round-up reminds us, we still have so much work to do. Also, if you find anything you think I should include here, please shoot me an email. I'd love to hear from you.
{photo source}

Pretty in Pink? A Reminder That We Still Have Work to Do in the Fight Against Metastatic Breast Cancer

(Full disclosure: I'm quoted a couple of times in this article.)

"According to the American Cancer Society, the 5-year survival rates for stages I, II and III breast cancer are 100 percent, 93 percent and 72 percent respectively, and not all early stage breast cancers will advance to stage IV....

In contrast, 75 percent of people diagnosed with metastatic breast cancer will die of the disease within five years."

But There's Reason (in the form of Personalized Medicine) for Hope

"Even more tailored treatment is on the horizon. In the next few years, patients with breast cancer can expect increasingly detailed diagnostic tests, tests that may predict side effects of treatments like chemotherapy or radiation, and better guidance in choosing the drug, or drugs, most likely to eradicate their disease. Genomic discoveries may also help patients with advanced, aggressive cancers, a group for whom even the latest treatments often fail. In these ways and many others, breast cancer prevention, treatment, and care are a microcosm of the slow but inevitable shift in healthcare....

'We are at the beginning of a revolution,' says the American Cancer Society’s Lichtenfeld. 'Breast cancer, as with many others — lung, melanoma, etc. — has a number of therapies in the pipeline, and that number is increasing dramatically. What does the future hold? Some successes, some failures. Will it lead to a cure? I can’t say that. Will it lead to control of breast cancer? That’s a real possibility.'"

A "Novel Platform" for the Treatment of Pancreatic and Breast Cancers

"Scientists from the Florida campus of The Scripps Research Institute (TSRI) have identified a novel synthetic compound that sharply inhibits the activity of a protein that plays an important role in in the progression of breast and pancreatic cancers.

In the new study, to be published in the February 2015 print edition of the journal Molecular Pharmacology, the scientists showed that the compound, known as SR1848, reduces the activity and expression of the cancer-related protein called "liver receptor homolog-1" or LRH-1.

In fact, the study showed that levels of LHR-1 in a cell's nucleus began to diminish four hours after treatment with SR1848, and the compound repressed specific target genes as early as two hours after administration."

Rates of Diagnosis and Survival Vary by Race

"A new study published in JAMA finds that among women in the US, the chance of being diagnosed with breast cancer in the early stages of the disease and the likelihood of surviving after such a diagnosis may be influenced by race and ethnicity, and this may be down to biological differences."

Friday, January 16, 2015

Resolutions, Schmesolutions

I have been asked so many times since being diagnosed with cancer whether I've changed my diet. My answer is always: not really. I was pregnant and then nursing for more than a year prior to my diagnosis, and I took those jobs seriously. I aimed to eat organic, whole foods most of the time. I took my prenatal vitamins. I only cooked with organic, free-range, grass-fed meats or wild-caught fish. I might have been a little obnoxious about it, but I hope not too terribly so.

My diet was far from perfect, I'm sure, but it's not like I was eating at McDonald's or KFC. Not that I would judge a person for that. Much.

When I was undergoing chemo-chemo, I ate what I could. Sometimes that meant I was drinking Gatorade -- red dye #5, sugar and all -- just to stay hydrated. Raw fruits and vegetables were largely off-limits because they could carry harmful bacteria, at least until my white blood cell counts rebounded. Not that I had the stomach for salad anyway. I just wanted to keep my weight up and stay reasonably healthy through treatment. If anything, I was less strict about what I ate because I just wanted to have an appetite for anything.

Last year, I even shook my head a little at friends who all seemed to be jumping on the paleo bandwagon. Mostly because the word drives my anthropologist, evolution-studying husband crazy. And I couldn't see how depriving myself of entire food groups was going to make me any happier. (Plus, I was really iffy as to whether it would make me any healthier.)

Do you know that I didn't have any signs of cancer in 2014? 

And so I let some things slide, especially in December. There were neighborhood open houses, cookie exchange parties, end-of-the-semester celebrations, Christmas Eve gatherings, and New Year's Eve toasts. I ate gingerbread and chocolate and cheese and peppermint-and-white-chocolate-covered pretzels and I drank wine and champagne like my pre-cancer self. I thoroughly overindulged. I had the breakouts and bloating to show for it. The holidays were fun, but if any January called for culinary austerity, it was this one.

{image source}
My goal was to do the Whole30 thing. If you're not familiar, it calls for eating whole, fresh foods with no added sweeteners of any kind, no dairy, and no grains for 30 days. Also, no alcohol. As I dug a little deeper into the theory, I came across blogs with quotes like, "You haven't really lived until you've made your own paleo mayonnaise." Or I realized my (uncured, organic) bacon wasn't "diet" enough for this diet because there was some sugar in it. For that kind of bacon, I'd have to pay $18 per pound, and I just couldn't rally myself behind that kind of quackery.

It also turns out that -- although I love to cook -- prepping meals in advance for an entire week is not my forte. I found myself subsisting on mostly Lara bars and trail mix, or apples dipped in almond butter, or "cheating" with non-diet bacon or a bite of Quinn's leftover pancakes.

I've been pretty great about limiting sweets and alcohol, and I'm proud of that. I've cut way down on my dairy and pasta intake. The combination has done wonders for my skin and my digestive system. I'm pretty sure I'm eating more nuts and nut butters and seeds than most birds, so I should probably figure out some alternative snacks.

This experiment has been eye-opening. I will probably never be the type of person who makes her own mayonnaise. Just about every type of packaged food out there has added sugar. A couple of glasses of wine a month might be necessary for my mental health. And I'm terrible at diets that are this restrictive.

Did you make any resolutions this month? Have you stuck with them? If so, please tell me your secrets!   I hear that if I write down my goals and share them with people, I am more likely to stick to them. Hence, this post.

Next up: my other project/resolution of sorts and an update on my book, the ultimate of new year's resolutions.