WRITER'S BLOG BLUES

In case you haven't noticed, I've hit a wall with my blog posts. I've placed my hands on this keyboard more times than I can count, trying to find a way back into blogging about TheBigCandMe. 

After my dreaded rash finally receded (turns out I developed an allergy to laundry detergent and soap), my scars healed, and my doctor was no longer on speed dial, my writing mojo took a sharp turn down the road of recovery — and has all but evaporated.

I've got the writer's blog blues. But I'm in good company. Many of my bloggy friends (The Accidental Amazon, Bringing Up Goliath, Breast Cancer Sisterhood, to name but a few) decided to suspend their blog writing so they can focus their energies on living life post-cancer. 

Other blogs come to a screeching halt because the writer died from cancer. (Debbi and Cindy and Donna and Barbara and Rachel come to mind.)

I've tried to spotlight bloggers who are in the depths of their cancer struggles in an effort to cheer them on and send visitors their way (see 9 lovely MBC Mavens, or my posts about Karen and OBB and Shannon — again, to name a few).

It's a funny thing, but the more I distance myself from the word "cancer," the less it occupies my mind and the less fear it conjures up. (Can you relate?) I've given myself time to forge a new me, one where I embrace the emotional and physical and psychological ramifications of breast cancer, including the aftermath of surgeries, the side effects of Tamoxifen, the jarring disjointedness I feel whenever I look in the mirror. 

I try to forget I've had cancer. It's kinda what you have to do to move forward. I realize I'm fortunate to even have the option. Far, far too many do not. Too many people are deeply encumbered in metastatic cancer, stuck in that hideous place, when all they really want to do is fly away... 

I could box this blog up, slip it into a folder, pretend the ugliness of the past 2.5 years never happened, and try to get on with the business of Life 2.0. 

It would be easy to consider my inability to move past my blogger's block as a sign that I should stop blogging. (My friend Nancy over at Nancy's Point had a great post recently on this very topic; check out "When Bloggers Stop Blogging.")

But I decided I'm not going anywhere. I still want to advocate. I still want to continue to educate myself and share what I learn and help those who are new to this disease. And I'll keep showing support for those dealing with mets or recurrence. Because advocacy can't fall to the folks already stricken with mets; they haven't the energy. They need a cure. It falls to those of us who are NED to find it for them. We have to keep taking action, making noise, creating change. We gotta be grumblers!

Speaking of grumblers, I'd like to give a shout out to Scorchy Barrington over at The Sarcastic Boob . Despite dealing with Stage 4 cancer, Scorchy spearheaded a movement on Change.org to petition Facebook to allow photos of mastectomy scars. Today, Facebook agreed. That is HUGE! That is the power of the people, my people. So keep grumbling!

Going forward, I've also decided to share more about my life. I'm dubbing this "Ordinary Daze." Stay tuned... In the meantime, please follow me on Twitter: @TheBigCandMe!

WRECKED TALE

I have been rather remiss in my blog posting. I was out of town, I got busy, I took a nap, I went out of town again, I got busy, I took another nap, yadda yadda.

So tonight I sat down at the computer with a few minutes to spare before bed, with the

© Green Monkey Tales

intent of catching up on a few pals in the blogosphere. I got excited to see that my friend Shannon, who blogs over at Green Monkey Tales, had written a new blog post. Shannon is a sporadic poster; her prose, some of it fiction, is truly brilliant. I eagerly clicked her link.  

I had no idea what her blog title "Wrecked Tail" was supposed to mean, but figured it would be funny; Shannon is hilarious, and often sprinkles a little monkey humor into her writing. 

It wasn't long before I realized what she was sharing wasn't funny at all. "I have rectal cancer but we monkeys call it "wrecked-tail" cancer. I have no idea how my tail got wrecked. So far, no one does."

WTF?? She's already had breast cancer, already gone through a botched reconstruction, had major complications, then had reconstruction all over again. She's had more than her share of heartbreak. (Way more.) And now she has rectal cancer? 

I've written about Shannon before — back in September 2012, in a post I called "A Tale of Two Shannons." I was showing her some bloggy love back then as she traversed the tricky halls of Recon 2.0. 

But she really needs our bloggy love now.

She needs our support. And you guys are such awesome supporters! So I'm asking if you could possibly pop over to Shannon's blog post {{{HERE}}} to show her some bloggy love? She would really, really, appreciate it. She's having a test on Wednesday, May 29th, that will stage her cancer and help determine her treatment plan. Until then, she is living in the horror holding pattern that is limbo land. I know you can relate.

Please hold her in your thoughts. Sending you lots of love, dear Shannon!
xoxo

PS: JUNE UPDATE Shannon went to see the oncology wizard HERE. Or catch up on her current status HERE.

KAREN, TC: AN UPDATE

The blogosphere is a pretty amazing place, filled with some pretty amazing people.

Some are bloggers. Some are readers. Some are commenters. Some are all three; some are two; others, one.

In our burgeoning breast cancer blogging community, we have a special woman who is a faithful reader and commenter on so many of our blogs. She always signs her name "Karen, TC." I never knew what the "TC" stood for; I never asked. 

Turns out it means "The Commenter." How perfect. How clever.

I always looked forward to Karen, TC's comments. She is a gifted writer who had no interest in starting her own blog. As she put it in a comment to me last month: 

"As you know i am not a blogger, i find such fulfillment in writing comments - to lend support, validate, comfort, encourage, commiserate, express gratitude for all the incredible insight bloggers like you impart, and share parts of hugh's and my dual cancer journey - every single day. writing injects a sense of balance and perspective, catharsis, and helps me get outside of myself - it's just such a tonic to be able to banish worry, which i consider another affliction cancer would just love to consume us with - writing is my way of saying, NO WAY!"

Karen is a cancer survivor in remission. In a cruel twist of fate, her beloved husband, Hugh, also had cancer — and also was in remission. They were so thrilled to both be NED! But last week, Karen found Hugh unresponsive at home, and he was rushed to the hospital. 

AnneMarie, of Chemobrain blog fame, is a staunch breast cancer advocate and beloved blogger; she immediately went into action, sending out a social media rally cry to round up support for Karen. AnneMarie's post "Karen the Commenter needs us" drew 61 comments (and counting!), and her blog became Command Central in terms of our communicating with Karen. (We're grateful she allowed us to hijack her blog. Thanks, AM!)

However, it is with deep sadness that I must tell you that Hugh passed away a few days ago. Karen is devastated. You can read about Hugh and his life here in another wonderful post by AnneMarie.

Let's continue to shower Karen with our thoughts and support over these next weeks and beyond. As we all know,  support is abundant initially but fades all too quickly. Grief does not. If you'd like to leave Karen a message, you may do so on the original post AnneMarie wrote HERE. Thank you.

Karen, TC — we love you! Big {{{hugs}}}...

9 MBC MAVENS, DAY 25 & 28

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!!  

First up is ♥ JAN, who blogs at Mournings Have Broken: "Each day I wake up determined to do something productive in the morning, because by mid-afternoon I am ready to veg out in front of the flickering screen of images and sounds designed to entertain. What can I get done? Perhaps scan some old photos into my computer and reminisce about the good ole days. Or reach out to prune or reach down to yank weeds in the front lawn so the neighbors don’t wonder why this woman who looks so healthy can’t keep up a perfect-looking landscape."

♥ T.K. blogs at Telling Knots: "I’m angry! I’m furious! I’m enraged! No one in my family has had cancer — until me.... It used to be that when I got angry I’d go for a long walk or spend an hour on my exercise bike. I can’t do that any more. I can’t pound pillows or throw stuffed animals against the wall. But I can write. I can and do write. Homo verbalis — I use my words. I am angry at cancer. I am angry at awareness campaigns that don’t donate to research. I am angry at people who call breast cancer 'the good cancer.' I am angry at my doctors for not having the tools to help me better. I am angry at my body for being so weak and tired. I am angry at the pain medicine that clouds my thought. I am angry at people who stay away from me because terminal disease scares them. I am angry, angry angry!"
 

♥ LISA blogs at Lisa Bonchek Adams: "We all have an expiration date. I’ve never thought of it like that before. We all have one. It is as if I’ve grabbed a carton of milk without looking. I took the one in front I guess, The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention. Except I did pay attention. I did. I was always paying attention. No one was more vigilant than I. I want to put this carton back, I want to say it’s not mine. I want to scream it. This must be for someone else. The date is too soon but I can’t trade it in for a new one. No givebacks. The problem is I don’t know exactly what the date says." 

♥ ANN blogs at But Doctor... I Hate Pink: "Now, here I go, busting some bubbles like a kid on a summer morning, but facts must be faced: the thing Stage IV breast cancer patients know is that when you get regression or even NED, it's temporary. Cancer always wins.... But, me? I am living in today. My cancer has shrunk — today. Something worked — today.  Something got me closer to my goal of seeing my son off to college — today. Screw the future. Today is good. Today is full of hope. Today is beautiful. I did what every girl does to celebrate — I bought some new shoes. I didn't get the kind I'd have bought four years ago, with sky high heels. I bought some Bobs, the flats that are by Sketcher, but I made sure that they had glitter in them. Some things never change. I decided if the cancer was shrinking, if I was approaching something resembling health, I should go out in real shoes, and not slippers. Shoes with sparkles." 

♥ KATE blogs at The Adventures of OBB: "I am a battle worn C-veteran now, fighting it for the third time and how can I not be scared to hell when my enemy keeps coming back? I am getting so tired of it and I just want it to leave me alone. I have so many other things I want to do and my little family deserves some fun. But again our summer will be spent doing battle against the uber-sized Bitch. And you know it isn´t just me suffering? Everyone in my life suffers too in their own way. I think of my beautiful daughter who will now understand much more about momma´s cancer journey. And I don´t want her to have to know about it. I don´t want her holidays ruined by my treatment or operations. I want to be free of this beast but I can´t seem to cut the chains." 

♥ LORI blogs at Regrounding: [NOTE: This is from Lori's speech at the Supreme Court hearing on BRCA gene patenting] "I am here today to stand arm-in-arm with my BRCA sisters because we are all in this together. I am here today as a metastatic patient and because every day for the rest of my life, I will live with this disease. I need every viable avenue of research uncovered, because if I live long enough, each treatment will probably stop working for me. I am here today because we must stop trying to turn America PINK; and instead unite our focus on research, not ribbons. I am here today because 40% of the human genome is ALREADY patented, denying information about our bodies and preventing cures. I am here today because stumbling blocks on the path to a cure must, MUST be removed. I am here today because lives on are the line. I am here,  perhaps most importantly, because I am the mother of a sweet, smart, wonderful 14-year old son who deserves to have his mother see him dressed for his first date, help him choose a corsage for prom, watch him graduate from college. He deserves to see my smiling through my tears on his wedding day. And breast cancer is slowly taking me away from him…." 

♥ SCORCHY blogs at The Sarcastic Boob: "Pain erodes your world — steadily and forcefully. In losing the ability to function normally you lose confidence in your abilities and your self-esteem is blanched. You have no energy and lose the will to do anything; everything from putting on make-up to cleaning to cooking to talking becomes a burden. People lose patience with you, HR departments begin to hint that you’re replaceable, bosses begin to get impatient, friends don’t understand why you can have fun for a few hours one day and then lock yourself away for ten days more. You push through, even when you can’t, because you don’t want to be considered a loser or a malingerer. You feel like you’re losing and there is no way back. Society sees you walking with a cane and measuring your steps and tells you that this is your fault. You’re not fighting hard enough. You’re not happy enough. I mean, c’mon, if it was that bad wouldn’t you be in the hospital? Malingerer. Loser. Coward."

♥ KATHERINE blogs at I Hate Breast Cancer and MBCNbuzz: "I knew that NOT having children increased a woman’s risk [of getting breast cancer], due to the unopposed flow of estrogen. But until this year, I never knew that recent childbirth can temporarily increase one’s breast cancer risk. As noted on cancer.gov: Women who have recently given birth have a short-term increase in risk that declines after about 10 years. The reason for this temporary increase is not known, but some researchers believe that it may be due to the effect of high levels of hormones on microscopic cancers or to the rapid growth of breast cells during pregnancy. I don’t recall ever seeing any article or other information on this issue... But I don’t seem to be the only one who thinks more young women — mothers and non-mothers alike — are getting metastatic breast cancer."

♥ JODY blogs at Women with Cancer: "It has been difficult, and still is, to relate to this new information [having MBC]. Yet my life is different. How I prioritize will be different. One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me. That is how I feel about you. And that we are all in this together, in this moment and those to come."