9 METASTATIC BREAST CANCER MAVENS

DAY 25's challenge: Share something from another health activist that everyone should know. (Only something? I've too many 'somethings' to share.) 

Last week, Jody Schoger — beloved co-founder and member of the Breast Cancer Social Media group #BCSM — revealed she has metastatic breast cancer (MBC) after having no evidence of disease (NED) for 15 years. Yes you heard that right: 15 years later she became metastatic.

The blogosphere was abuzz with shock and love and support for Jody. Unfortunately Jody is far from alone; 155,000 Americans are living with MBC right now. Since Day 28's challenge is to create a must-follow list on a single social network, I'm focusing on bloggers with metastatic breast cancer. I know there are many MBC bloggers out there; if you have an MBC blog and aren't listed below, please leave a comment in the section for a future post. :-)

Here are 9 of my favorite MBC bloggers. To read more of their work, just click on their blog links and SHOW THEM SOME LOVE!!  

CELL DETECTORS and SOCIAL MEDIA, DAY 23

DAY 23 of #HAWMC, PART 1: Write about a device I wish existed to help me track my health. I'd invent a portable meter-like device (like the one diabetics use) ...

AN ORDINARY SUNSET, DAY 22

DAY 22 of the #HAWMC challenge: Write about something ordinary that’s inspiring; something simple, perhaps overlooked.

 

© 2013 theBigCandMe.blogspot.com

Time to confess: I am a cloud chaser. I make it a point to look out the window every night to: A) see if there are any clouds in the sky; if so, then I: B) go outdoors and look up to determine whether what I see is sunset worthy. If yes, then I: C) grab my camera and head to the hiking trail. If no, then I: D) stay home and finish the dishes. 

There is an odd cloud phenomenon that I've noticed; maybe you have too...

HIKING IS THE BALM, DAYS 20 & 21

I'm a bit behind in my WEGO Challenge writing — which is appropriate since the topic I stalled on is burnout! With today being Earth Day and all, I thought I'd kill two birds with one stone (pardon the nature idiom).

DAY 20 of the #HAWMC asks: What gets me OUT of burnout, or OUT of the pit of despair when nothing is going my way? I get thee to the wide-open spaces. 

Copyright TheBigCandMe blog

Hiking up a hill that spills out onto a breathtaking vista is the surest way for me to
put my problems into perspective. The sight of nature acts like a vacuum for my worries, sucking them into the wild, spewing them out across the valley floor, rendering them too infinitesimal to take me down.

I love to hike in the morning when the light is bright and the breeze still chill, before the air drifts up between the canyons and gets toasted by the sun. 
 

I also love to hike when there is a threat of an approaching storm. Weather of any kind is a reminder that nature is in charge — and I am not alone.

Because it isn't just me up on that mountain; there is a pulsing world of wildlife living in the chaparral and the bunchgrass. 

Bees and insects alight on dainty blossoms, ants aim for the lily leaves, flies feast on coyote scat. Rabbits run through sage scrub; deer disappear beneath the protective cloak of an evergreen, a sycamore, a bay laurel or a black walnut tree. The mountain sings with the sparrows and wrens, swoons with the red-tailed hawks, swoops with the eagles and falcons. 

Lazy lizards with amputated tails stop to sunbathe, while ground squirrels appear like popcorn out of holes in the earth. Rattlesnakes and tarantulas co-exist — it's us that must make our peace with them.

I often encounter the unexpected when hiking, and I look for (and embrace) these moments. 

It's always a good day when I spot a horse being worked out much like me on the trail. Or when I hear the roar of half a dozen cops on motorbikes who stop to shoo a king cobra off the trail and warn me of others farther down the hill.
I also know if I hike too close to sunset, I risk entering "Beauty and the Beast" zone. That's when nature puts on her technicolor light show, while hungry coyotes with their haunting howls hide stage left and right. 

It's also when I see the evening birds fluttering above me in a quickly darkening sky and I recognize them for what they really are: These are the imposter birds. I pick up my pace and pull my hat a little lower over my brow, hoping to make it to my car before the bats drive-bomb my hair.
 

Despite my sundown dance with the Princes of Darkness, no matter when I take my leave of the mountain, I make sure to leave my troubles there too. Let the wildlife have at my worry; I've got some livin' to do.

DAY 21 of the #HAWMC asked me to ponder this quote: "The flower that blooms in adversity is the rarest and most beautiful of all," then write about where I bloom best. I believe I just did. Two challenges in one post, two birds with one stone. Whew who!

VINTAGE ME, DAY 19

DAY 19 of #HAWMC — post a vintage image of myself and write a caption about it.

This photo was taken:

Copyright TheBigCandMe blog

• 6 months after my siblings spun me around in my father's office chair, sending me flying into the furnace.

• 3 years before I would slice my lip on a broken china cup while pretending to sip tea with my dolls.

• 4 years before I would see the Pieta at the New York World's Fair.

• 7 years before I would develop a fear of dogs after being bitten by a German Shepherd, leaving me with a scar near my eye...

SO LONG TO CINDY, DAY 18

DAY 18 of #HAWMC and I'm supposed to write about a time that I lashed out at someone close to me out of frustration/fear/anger caused by cancer.

Instead, I prefer to write tonight about the anger I feel that another lovely lady has passed away from cancer. Her name was Cindy. She had a very rare cancer: sarcoma of the upper arm.

I didn't know Cindy in person, but I followed her blog. In February 2013 she was given 6-12 months to live. Her friend Becky posted that Cindy died on April 4, 2013. 

Cindy lived in New Mexico and in addition to writing about cancer, she loved to write about hiking and walking in nature. In fact, she devoted an entire section of her blog to what she called The Mind-Body Walk. I loved that part.

In honor of Cindy, I'd like to leave you with a bit of her writing....

WORDLE WEDNESDAY, DAY 17

DAY 17 — Wordless Wednesday! As part of #HAWMC, we're creating word clouds via Wordle.net. 

To come up with the words and terms I used in the cloud below, I perused many of the breast cancer blogs I follow and then selected a word or phrase from the title of a recent posting of three dozen of them. I love this wordle because it showcases what's on the minds of many breast cancer bloggers the past few weeks:

MY LITTLE WHITE LIE, DAY 16

DAY 16 of the #HAWMC is F-U-N! Lord knows we could use some levity in the wake of the horror in Boston. 

Today, I'm going to tell you FOUR things about myself — but only three are true. One of them is a lie. Can you find it?

In the comments section, tell me which of the following statements you don't think is true. I'll reveal the correct answer at the completion of the #HAWMC challenge!

A) I used to work with Jim Carrey.

B) I'm allergic to nickel.

C) I performed in an improv troupe.

D) I left a million-dollar boyfriend for an unemployed jazz musician.

METS MONDAY, DAY 15

DAY 15 of the #HAWMC is about sharing. I've been asked to select someone else’s blog post, write a comment to them, then make that comment my post. The blog I've chosen to share dovetails with what we in the breast cancer blogging community call "Mets Monday." This is the day each week dedicated to promoting awareness of metastatic breast cancer.

Metastatic cancer occurs when cancer cells spread to another part of the body from where it was initially found. According to the National Cancer Institute, for example, breast cancer that has spread to the lung is metastatic breast cancer, not lung cancer. (To learn more about metastatic breast cancer, please visit METAvivor.org as well as the Metastatic Breast Cancer Network.) 

Today, I am highlighting one of my favorite bloggers — Kate, a 33-year-old wife and mother living in Norway and dealing daily with the reality of metastatic breast cancer...

SHARING THE LOVE, DAY 14

DAY 14 of the #HAWMC challenge gives me a chance to thank a few of my fellow Health Activists. I participated in last year's #HAWMC and writing every day under a specific topic can feel, well, forced. And challenging. This is my shout out to a few of my fellow breast cancer bloggers who are taking part in the WEGO challenge, despite the commitment (and writers block!) that a daily prompt can bring.

I chose to highlight snippets from each blogger's Day #10 challenge; that's the day we shared our favorite images of ourselves, and I think it provides you, the reader, with a sense of who these ladies are and why I think they're terrific! (Just click on the links below to read their fabulous posts in full.)...

ACROSTIC BREAST CANCER, DAY 13

DAY 13 of the #HAWMC challenge: Write a health "acrostic" (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase) for my health condition. Since I write about breast cancer and reconstruction, I've combined them.

BILATERAL

RECONSTRUCTION:

ELECTIVE,

AGGRESSIVE

SURGICAL

THERAPY.

CANCER

ANNIHILATES

NORMALCY,

CREATING

EGREGIOUS

REPERCUSSIONS.

HOW I HANDLED THE BIG C NEWS, DAY 12

On DAY 12 of the Wego Health Activist Writer's Month Challenge, I'm asked a simple question: "If you could go back in time and talk to yourself on the day of diagnosis, what would you say?" Well, I probably wouldn't stop talking if I had it to do over again. The way it went down, I hardly talked at all that day. Here's why.

I waited about five days between biopsy and phone call. When the phone finally rang at lunchtime on December 8, 2011, I heard Dr. S. (my primary physician) say in a very upbeat voice, "Well, I have your test results!" 

And I thought: Oh good! In the nanosecond between his comment and mine, I really (no, really) thought he was going to give me good news, that the biopsy revealed nothing. I to this day can remember how my body suddenly relaxed.

But then he dropped the C-bomb...

CRAZY FOR TWITTER, DAY 11

Day 11 of the Wego Health Activist Writer's Month Challenge asks us to write about our favorite social network. 

I'm crazy for Twitter! Which is completely crazy, because until two weeks ago I was a Twitter holdout. But I folded up my fear and finally completed my account. My impetus? To participate in the Monday night #BCSM Tweetchat (yes, I'm impressed I even knew what #BCSM meant too!). 

On Twitter, #BCSM stands for "The Intersection of Breast Cancer and Social Media." This online community was founded in 2011 by Jody Schoger and Alicia Staley (both breast cancer survivors), along with Dr. Deanna J. Attai, a board-certified breast surgeon. In April of 2013, they created a BCSM blog, and posted a terrific article entitled, "Respect the Hashtag." Check it out to learn more about the proper ways to post on Twitter and #BCSM.

The #BCSM’s mission: "To help support, empower and inform women about issues related to breast cancer." #BCSM is an awesome group of women and men who have cancer, had cancer or have an interest in cancer. However, #BCSM Twitterchats are not for the faint of heart! They move quickly, and I am slowly getting the hang of thinking of short but relevant things to tweet. Join us every Monday night at 9 PM Eastern Time, 8 PM Central Time and 6 PM Pacific Time.

I know now why I was afraid of Twitter: I didn't understand it. I thought it was something I could only access from my smart phone. (Which I didn't even own until last Christmas. Silly me.) My world has been widened: I've since figured out how to "follow" folks (475 and counting!), and it's been great fun to watch as people "follow" me (150 and counting).

To follow me on Twitter, click here. See you Monday night!

WORDLESS WEDNESDAY, DAY 10

DAY 10 of the Wego Health Activist Writer's Month Challenge: It's Wordless Wednesday (YAY!) and I'm to post my favorite picture of myself. I chose this photo for five reasons:

1. It's a self-portrait 
2. It was taken post-cancer and represents my "new" life
3. It was shot at the beach (one of my favorite places!)
4. It was taken on a day I was hanging out with my friend R., who has metastatic breast cancer. When I see this image, it reminds me of her. (R. is doing remarkably well despite having mets for many years. She is feeling terrific. BIG shout-out to R.!)
5. It represents the mystery in me. You may have noticed that I'm rather shy about revealing who I am on my blog. That may seem strange since I'm certainly not shy about writing about breast cancer! But I find it more liberating to write from behind the shadows. Of course, this could change at any time. But that day is not today.

5 TIPS FOR CAREGIVERS, DAY 9

DAY 9 of the WEGO Health Activist Writers Month Challenge is about caregiving and to me that means easing the pressure on everyone involved. 

As a cancer patient, I've been on the receiving end of plenty of caregiving; as a daughter, I've been on the caregiving end to both of my parents at various times. Below are some strategies that fit both scenarios.
 
5 TIPS FOR CAREGIVERS...

SNAKES AND BREAST CANCER

DAY 8 of the WEGO #HAWMC asks: "If your health condition was an animal, what would it be?" A snake comes immediately to mind; specifically, a timber rattlesnake — aptly named C. Horridus. (I found that so apropos!)

This is a California rattler.

My 8 reasons why rattlesnakes remind me of breast cancer...

10 THOUGHTS ABOUT CANCER

DAY 6 dawns on the WEGO Health Activist Writer's Month Challenge. Last year, we were asked to write a letter to our 16-year-old selves. That was a toughie...

WRITING MY WORRY AWAY, DAY 5

I read an interesting article on the Huffington Post website yesterday that became the fire behind DAY 5 of my WEGO Health Activist Writers Month Challenge.

THE CHALLENGE: If time, money and physical restrictions were not an issue, what would my "plan" for breast cancer activism be? How would I direct my activist energies? My aspirations are rather simple. I want to write my way out of worry. And I want to show you how to work your worry away, too...

BREAST CANCER SURGERY TIPS

After my double mastectomy in February 2011, I compiled a list of things that helped me prepare both before and after surgery. I hit a nerve — it's my blog post with the greatest number of hits.

Some of these tips apply before your surgery, some during, and some afterwards. With some minor tweaks to update a few items (for example, I combined shopping tips and added a photography section), here are my TIPS ON HOW TO PREPARE FOR BREAST CANCER SURGERY. I hope it helps you or someone you know. Please feel free to share! 

5 THINGS YOU NEED TO KNOW ABOUT BREAST CANCER

Day 2 of the Wego Health Activist Writer's Month Challenge has dawned — and it's Introduction Day! That's when I share my encounter with Breast Cancer and the 5 things I want you to know about it. 

1) My first blog post was about the mammogram that would change everything. Next, I wrote about hearing the words You Have Cancer (that's here), how I broke the news to my husband here, why we chose to keep it a secret here (and the lesson I learned from that here), and how I kept myself from going completely off-the-wall ballistic here and here. 

2) And all that happened before a scalpel ever touched my skin. If you've ever had cancer (or been through it with someone close), you know exactly what I'm talking about. (I can hear your shaking head from here!) If you've recently been diagnosed, the above links will help you. A lot...

FEAR FACTOR, DAY 1

Today is Day 1 of the 2013 Health Activist Writer's Month Challenge (HAWMC). I took part in the challenge last year, too, so this is my second time at bat. The daily writing process last year was challenging and invigorating yet also very fun. My favorite part was bonding with other breast cancer bloggers. And I hope some of them will join me again this year! The HAWMC challenge forced me to write faster, and more frequently, and since I have trouble with both, it pushes me to be a better blogger. So I'm jumping in again and looking forward to where the month will lead! Let's get to it...