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." 

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.

© 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. 

Hiking up a hill that spills out onto a breathtaking vista is the surest way for me to ...

VINTAGE ME, DAY 19

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

© theBigCandMe.blogspot.com

This photo was taken:

• 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: