Tuesday, August 20, 2013
This post has been long and coming as I've vacillated for months about coming out of the Twitter closet (there I said it). But to my credit, I've been running a Twitter feed for the past 2 years for two business' and frankly tired of not being able to #follow who I damn well wanted to. Instead of being PC in Twitterville, I decided I wanted my own, personal account so that I could get all the latest and greatest deals from Groupon, Travelocity and track the food trucks in L.A. just for fun.
But that didn't last especially long because within a month of getting my own big girl account, I received news that I had cancer. So, my elation for Groupon deals swiftly wained as news of this third diagnosis was a total buzz kill. Instead I sheepishly started seeking out resources for breast cancer and started to connect with some fellow survivors. Next thing you know I have more than 600 followers (people who follow me) and Monday night live chats for my online support group #BCSM (Breast Cancer Social Media).
My language swiftly changed from friending and liking on that other social media website with a lowercase 'f' to hashtags and followers on my new social networking platform with the little birdie. With 140 characters at my fingertips, I rapidly learned that hashtags like #cancersucks and #breastcancer would lead me to a community of sassy warriors and people in my malignant new world.
So vastly different from my first diagnosis of getting into the car once a week to drive to the nearest cancer center support group, I have come to find solace and anonymity with my online gal-pals going through breast cancer of all different stages. I even found a '3-peat offender' like me and an immediate twriendship was made.
We have supported each other in ways that I never expected. We're blogging about this prolific disease, discussing the politics of the Susan G. Komen Foundation and debating about the out-of-control pink culture of finding a cure for all of us. With names like 'thescarproject,' 'bustedfd,' 'ItsTheBunk,' 'BoobsOnTheMove,' 'LovelyKatieLumps,' 'CancerHAWK,' 'ChemoBrainFog,' 'StupidDumbBreastCanc' and 'TalkAboutHealth' and 'AFreshChapter' - we're connected in a way that is frankly, safe, bold and downright authentic.
Wishing each other good luck on important procedure days and offering up helpful hints for chemo, surgery and doctors, we're running in a strong pack. With no time to waste, the 140 character restriction allows us to get straight to the point. And when we're mad as hell at times as we've lost a few gals this past year to this beast of a cancer, we're all trying to take charge of our own journeys in a virtual and supportive fashion. And for this, I am eternally grateful to my kindhearted and spirited tweeps.
So, follow or hashtag me @DeeAnne_Barker to catch up with me in the twittersphere! In the meantime, #peaceout.
Saturday, August 3, 2013
**Welcome guest blogger and my 500th Twitter follower, Dena Taylor. I wrote her and asked, "As my 500th follower, would you be willing to write a guest post from your point of view with cancer?" and she said "Wow! Yes!" and... "Congrats on your 3-time victory over emeffing cancer!" And there you have it, a new 'Breast Friend' to add to the lot of us. Thank you, Dena!
“What movie are you guys gonna watch?” I asked my friend Alice’s 5-year-old daughter Claire on a recent visit.
“Despicable Me,” said Alice.
Claire grabbed the DVD case out of Alice’s hands and held it up for me to read.
“Ooh, ‘Despicable Me.’ That looks fun!”
“Yeah,” said Claire. “They’re bald. Like when you were sick.”
One time, in my early 20’s I drank too much Bacardi 151 and Diet Coke and was sick for three days. Another time, while on a fancy boat in the Caribbean, I got seasick during a storm and barfed into a bidet. I was sick to death of hearing Gnarls Barkley’s “Crazy” when it played on the radio for the 50-millionth time and was once so lovesick, I dropped a pant size. Friends accuse me of being sick in the head, usually when I drop the word “moist” into a conversation or tell the story about what I found on the wall of a port-o-potty at a 5k event in Seattle.
There have been more serious sicknesses too, the worst of which required emergency hospitalization, once for a ruptured appendix and once for a small bowel obstruction, likely the result of the former’s post-op adhesions. But never, in any of the aforementioned instances, have I not had hair.
So what, then, was wee Claire referring to? That would be the one and only time I was bald. But it wasn’t because I was sick. In fact, in September of 2006, I felt particularly healthy and happy — randy, even — knowing that my best friend and I were just weeks away from celebrating my 40th birthday in Italy where we would surround ourselves with as many sexy Italian men as we could find. I had no idea a cancerous tumor was growing in my breast. But a routine mammogram and subsequent biopsy confirmed it, prompting me to swap our festive trip to Italy for a somber trek to the OR. It was an agonizing decision but having had microcalcifications in the opposite breast three years before at the age of 36 and a mother with a history of DCIS, a bilateral mastectomy with immediate reconstruction was the only choice I could live with.
Then, in early November, thinking the worst was behind me, and reconstruction nearly complete, I got more bad news. I scored “intermediate” on the Oncotype test, a genomic assay used to help determine the likelihood of recurrence and benefits of chemotherapy. After consulting with two oncologists, I ended up enduring six tri-weekly rounds of chemotherapy (FAC + WBC boosters). My first infusion was after Thanksgiving and I was cue-balled in time for Christmas.
Hair loss was a side effect of chemo. So were the headaches, bone aches and nausea I felt in the first days after an infusion. And the fatigue, brain fuzz, digestive calisthenics, persistent watery eyes and a runny nose in the remaining 16 or so days of each cycle? Side effects. I expected them, planned for them and managed them. But I was never sick.
So chemo sucked worse than back-to-back episodes of the Beverly Hills Housewives and after eating a few salmonella burritos while wrapped in a Snuggie of mold spores but you were never “sick?” C’mon.
I know and I’ve been thinking about my post-cancer refusal to equate those side effects with being sick ever since I was likened to a bald, yellow, cylinder-shaped homunculi. What I’ve realized is this: Of all the health challenges I’ve faced, it’s cancer that has scared me the most, and thus it’s cancer I want to identify with the least. If I yield to it in any way, even by saying I was sick, I’m giving it more power in my life than it deserves. I don’t want to think about it every day or spend precious time worrying about it coming back. There are too many other things vying for my attention, like traveling to Peru, sipping on a Moscow Mule while catching up with friends, that cute guy on the running trail. When I do think about it, I want to focus on how I confronted it (with support, determination and some luck) versus dwelling on what I suffered.
People are going to describe my cancer and chemo days as the time I was sick. And that’s okay. It’s another opportunity to share my experience, generate awareness and support someone new in navigating the scene. But the squat, yellow, bug-eyed minion comparison? That could be a problem.
Dena is finishing her memoir on her cancer experience, which includes plenty of descriptions of being sick. It does not include the story about what she saw in the port-a-potty. That story is by special request only and requires a signed waiver because it’s really gross. You can also find Dena on Twitter @DenaTaylorTime and on her website, www.denataylor.com