Ready to Share My Story, My Hair

My favorite wig will join me on February 13 when I talk to a group of second-year medical students at the University of Florida. My task is to share my breast cancer story with these students, who are learning the basics in an oncology course, and then to answer their questions. I am also taking along a Ziploc bag filled with the three ponytails I chopped off before shaving my head pre-chemo, some magazines that contain my published cancer articles, and some notes to narrow down my 8-year-old journey into easy-to-understand tidbits that fit into something like 20 minutes. I’m ready. So is my hair.

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Sometimes, I Get Prizes

There are all sorts of greats about blogging — like reaching people who need breast cancer information and inspiration, connecting with amazing folks I would have never met had I not launched this space on the Internet 8 years ago, and journaling my story for my own therapeutic benefit — but one of the neatest perks of penning my details is scoring goodies.

Recently, I was asked by the crew over at Scarves Dot Net (SDN) to answer some interview questions for the SDN Spotlight. And I did. (I’ll point you in the direction of the piece once it publishes.) And after I submitted my responses to eight questions, my lovely contact person invited me to pick a scarf to serve as a gift for my contribution to the SDN blog. I picked this striped orange number, and I can’t wait to throw it around my neck in some fashionable display. Fortunately, SDN features a nifty guide to 50+ knots, so I can make sure I look the part of a stylish girl, even though I’m really not all that spiffy.

I’m telling you this happy little story because I am way thrilled about my new prize, but also to recommend that you pick up your own scarf or two — for you, for friends and family, for teachers, for a cancer survivor who needs a little color in her life. And, of course, I say go for the striped orange number. Just because I love mine.

Thank you, SDN, for sharing my story and for your kind and generous gift.

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My Parts Are Perfect

Apparently, my parts are perfect — well, except for the few organs that have caused my pelvic floor dysfunction (but are not allegedly the culprits in my overall tummy turmoil). All else, though — flawless. Everything in the view of both endoscopy and colonoscopy were clean and clear, MRI revealed my pancreas and nearby organs to be healthy, tests of my blood showed no food allergies, blah, blah, blah, and today’s sonogram of my female stuff identified no abnormalities. “Perfect,” said the tech who did the test. I have a follow-up Thursday with the doctor, who maybe will see something the tech did not, but it’s looking like there just isn’t anything medically wrong with me. There is the IUD that came out last Wednesday — it’s my only remaining hope for explanation, and, interestingly, my stomach has felt great ever since it was removed. Now, in the past, I’ve gone spans of time feeling well, only to later have a horrendous episode, but wouldn’t it be so glorious if removing that darn copper thing was the trick? Ah, yes, it would be.

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I Don’t Care If You Know

I don’t care if you know about my breast reduction (34DDD > 34C), the two giant babies I pushed out of my body, my breast cancer, my tummy tuck (did I mention the two giant babies?), my stomach ailments, my pelvic floor dysfunction (did I mention the two giant babies?), or anything else that may seem highly personal and private. I don’t care because I’m an oversharer, and I spill my most intimate details because I just know there is someone out there looking for folks who have traveled similar roads, and I am happy, eager even, to share my roadmap, however choppy and confusing it may be. That’s why I’m here to share the latest in my medical saga.

Tummy troubles have plagued me for more than 1 year. I’ve been poked, prodded, scoped, doped, you name it, and nothing (NOTHING) has been presented to me as a cause for my discomfort, which two nights ago had me in such physical distress I was sure something in my body would explode while I slept (it didn’t, and I actually feel pretty well today). My next step comes Tuesday, when I report for a sonogram of my belly. My OB/GYN ordered the test on Wednesday, after he removed my copper IUD (my only option for quality, non-hormonal, post-breast-cancer birth control) just in case the foreign object, which has been in place for 8 years, is causing my woes. I guess he’ll be looking via sonogram for fibroid tumors, ovarian cysts, something that looks just not right. If he finds nothing (his prediction since he likely would have discovered anything significant during internal exam), I’ll give the no-IUD scenario about a month; if that doesn’t help, then I honestly don’t know where I’ll turn. Well, I’ll turn to some sort of (maybe permanent) birth control, but the stomach stuff — no idea. I will surely keep you in the loop, though, because I don’t care if you know. Actually, I want you to know, just in case it does some good for you or someone in your life.

Note: Although my Paleo eating has not eased the gut pain (I was so hoping it would), I am sticking with this healthy diet because it makes me feel better overall, and I just love knowing that there is not one speck of processed anything in my body.

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Thrilled to Watch Him Grow

Who is 5 feet 6 inches tall and 122 pounds? My just-turned-12-year-old child. He is 1 inch shorter and 12 pounds lighter than me. If he follows the same fast track he’s been on since birth, he should be about 6 feet 5 (give or take an inch) as a full-grown dude. That sorta scares me. It also kinda thrills me that I get to see this kid almost pass me by because when he was 3, and I had breast cancer, I wasn’t sure I’d see it happen.

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Cancer Creeps In

Danny does not love to read. He complies if we boss him into it, but he rarely takes the initiative to pick up a book and dive into a great story. He does like to read with me, though, and, so, I have made it my mission to help him get lost in the written word.

Today, we read aloud on the front porch (John secretly snapped this pic) from our own copies of the same book, and this is how it went: Danny read one chapter, I read three chapters (they are short), Danny read another chapter, I read two more, and so on. This back and forth is what keeps him engaged, and the joy for me is that I get to listen to my 9-year-old boy read aloud, which is magical; I love how he uses his voice to narrate the pages, how he reacts to suspense, how he asks me questions to clarify what’s happening. The book we’re currently reading — The Tiger Rising — is filled with powerful messages that are such super teaching topics, and I am thankful for the dedicated time with Danny to discuss what author Kate DiCamillo covers in her gripping paperback; there is bullying, sorrow, anger, friendship, loss, even cancer.

It was Danny’s turn to read when the word cancer appeared in Chapter 16.

“How did your mother die?” she asked suddenly.

Rob sighed. He knew there was no point in trying not to answer. “Cancer,” he said.

Danny shot a look my way, and our eyes locked. Cancer. The word always inspires a reaction in our family. I am sure it always will.

We stopped reading shortly after the cancer mention. Danny’s attention had worn thin, and he was ready for dinner. Tomorrow starts his school Read-a-Thon, though, so we will hit our books again before long. I can’t wait to learn more about Rob and the caged tiger he has been hired to feed, the tiger Rob’s friend Sistine wants to set free because it’s not nice to keep animals in cages. I hope Danny can’t wait, too.

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$8 to Help Crush Cancer

It’s been years since I’ve done any cancer-cause fundraising — I collected so many thousands of dollars over the course of a few Making Strides Against Breast Cancer seasons that I thought it was only fair to give my family and friends a break from forking over funds on my behalf. But now, I am back, and I’m requesting that you donate a one-time, small contribution of $8 to the American Cancer Society’s Relay for Life.

Why $8? Because I have survived cancer for 8 years, and that’s $1 per year of survival, and it’s a fairly small amount to contribute, and if a bunch of people donate, this could really add up.

Why Relay for Life? Because Joey’s middle school has a team, and I want to support the OVMS Panthers as they do their part to help crush cancer. Plus, Sharon Sailor, a very sweet friend of mine who has known Joey since he was a  little Pre-K guy, is heading up the team, and that really makes me want to back this worthy endeavor.

So, if you are in the position to share 8 of your dollars (they are tax deductible, by the way), just head on over Sharon’s page, click on Donate, and complete all required fields. Then, accept my sincere thank you for your kindness, and don’t forget that every one of your pennies counts toward saving lives that may otherwise be lost to cancer.

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Here’s the Thing

The thing about all these breast cancer women I know is that many of us have never met in person. We have connected mostly through mutual friends, blogs, and Facebook, and together, we share our stories, raise awareness, spread hope, swap wigs, and find mentors for each other. We share a common bond that makes personal contact unnecessary, and when someone in our community passes away, the sadness runs deep, and the reminder that none of us is immune to death really stings. Tomorrow, I am confident, will be a better day.

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Letter to a Little Girl

I just wrote a letter to a 9-year-old little girl who will begin year-long chemotherapy for a brain tumor that could not be completely removed via surgery. I am sending her (along with the letter) a pair of comfy, cozy, fuzzy socks because they helped me when I was sick. Suddenly, though, my illness at age 34 does not seem as important as hers at age 9. And also, why must today deliver such sad news?

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She Is the Toughest, Bravest Cancer Girl I Know

My cancer is gone, and it’s likely not coming back. Angi’s cancer did come back — she has been diagnosed three times — and while I celebrate my survival from a really sucky disease, I never lose sight of the fact that some women, like Angi, are never free of the ravages of breast cancer. Some live their entire lives in treatment; some die much too soon because treatment doesn’t work. Sadly, it seems that Angi, whose battle has been raging since 2005, is nearing the end of her life. This morning, her husband wrote:

This is not Angi it is her husband. There is no easy way to tell you all this so ill just spill it. Angi is not well. She is no longer able to communicate in any way to anyone. We are weeks if not days away from her end of life. This took a nasty and fast turn the last three days. She is under hospice care and we are currently trying to manage her pain and give her comfort. Thank you in advance for your thoughts and prayers. Feel free to reach me if you feel the need to just know I am overwhelmed at the moment. Ruben Navarro

Angi is 38 years old. She has a 13-year-old daughter. She is the toughest, bravest cancer girl I know.

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Paleo Passes (My) Test of Time and Taste

Over the course of a few days this week, my husband and I helped our sixth-grader study for his World Cultures semester exam, which I would have surely bombed because, while I love learning about history, I have a heck of a time keeping straight in my brain all of the names, dates, places, and key points about so many competing topics. (Note to Joey: I do hope you did not inherit my test-taking mediocrity, and if you did, then may I suggest you become good friends with extra credit.)

It took some pretty savvy study smarts from the dad in the family to help Joey spit out the goods on civilization and culture, early humans, Ancient Mesopotamia, Ancient Egypt, Ancient Israelites, and Ancient Greece. I did come in handy for one bit of content, though, and I hope that when Joey was faced yesterday with paper and pencil and bunches of multiple choice questions that my 60 days of eating like a caveman triggered everything he needed to know about the Paleolithic people.

What Joey needed to know is that the Paleo folks were hunters and gatherers; they ate only what they could, well, hunt or gather. There was just one real mission during those long-ago days — to search for the next meal in the spirit of survival. Then came the Neolithic Age, characterized by the shift to farming, which made life much easier. Food was more of a sure thing; survival was not so elusive. Ever heard of the Agricultural Revolution? This was it. Farming changed they way people lived. (Joey needed to know this, too.)

Then, a whole bunch of years passed by, and here we are today, in a society that dishes out over-sized plates of fried, fatty, processed foods to a population of overweight and unhealthy adults and childen who just might benefit from heading back to simpler times. Or would they?

U.S. News Health, in consultation with a panel of diet and nutrition experts, scrutinized 29 different diets, my own Paleo plan included. The pros ranked each diet according to how easy it is to follow, its ability to produce short-term and long-term weight loss, its nutritional completeness, its safety, and its potential for preventing and managing diabetes and heart disease. The goal was to identify the best approaches to eating, and Weight Watchers, the Biggest Loser diet, the TLC diet, and the DASH diet all came out on top across several categories. The diet gurus gave Paleo a few compliments — it’s low in sodium and high in protein, for example — but overall, Paleo didn’t make the cut. Noted flaws were (a) weight loss is not a sure thing, and one small study showed a maybe loss of about 5 pounds over 3 weeks; (b) heart benefits are unknown, and it’s not clear whether Paleo can prevent diabetes; (c) shunning grains and dairy can minimize nutrient intake; (d) the diet can be pricey; and (e) it’s just plain hard to follow due to the total ditching of major food groups.

In a nutshell (nuts are Paleo-approved, by the way, but not peanuts because they are not actually nuts), I am not swayed by this diet round-up. I’m sticking with my primal ways because I feel better overall eating only lean meats, veggies, fruits, nuts, and seeds (oh, and eggs, too). I have lost roughly 7 pounds in 2 months (that was not my goal, just a perk), I’m taking a few supplements, I’m not spending too much, I love that my body is clean and free of junk, and I personally don’t find the plan too hard to follow. Granted, I have medical reasons — tummy troubles and the endless pursuit of cancer prevention — to embrace the strictness, and I am the first to admit that this could be a rough road for someone pursuing Paleo just for the fun of it. For me, though, it’s a fit. Simpler times seem to suit me just fine, and I am confident I am healthier due to my hunter-gatherer food choices.

Have you tried any of these 29 diets? Got a favorite?

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The Last Word

I had the last word today during a visit with 20-some University of Florida medical school applicants. They were gathered on campus to complete a day-long interview process, structured to give them a glimpse of a day in the life of a med student, and on the agenda was me — a real, live patient.

I told my 8-year-long story from beginning to end in about 20 minutes (whew!) in a freezing-cold room in the basement of Shands Hospital (I was actually shivering at times), and my favorite oncologist, who serves as the assistant dean for the College of Medicine Admissions, said it went very well. I think it did, too.

It was my job to deliver the last word to the folks sitting with me in a circle formation, the individuals who will likely one day be charged with the responsibility of delivering health care to sick people. “Practice medicine with sensitivity,” I told them. “Even if you must fake it,” I said, “show some compassion because it can make a huge difference.”

Then, I read from a hand-written note that was mailed to me by the surgeon who performed the needle biopsy on my suspicious left-breast mass. He’s the one who called me at home the day before Thanksgiving 2004 to inform me that “unfortunately, cancer cells were found.” His note read:

Dear Jacki,

Just a brief note to let you know that I regret being the messenger of bad news, but know that you will come through this difficult time healthy & strong. I & my staff wish for you a smooth & speedy recovery.

Dr. Mac

That note mattered. It made me feel less like a statistic and more like a cared-for individual. That note still matters; that’s why I keep it at close reach, so I can forever remember that there are doctors who really do care.

Sensitivity.

That was my last word.

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I’m Perfect — At Not Being Perfect

My mom recalls with such clarity my elementary school teachers sharing with her how one itty-bitty mistake in my universe sent me into an I-must-start-over-again tailspin. Imperfect handwriting was not OK, coloring outside the lines was not good enough, and if my ponytails and braids were lopsided, I was inconsolable. Perfection is what I sought. Always.

Danny is nothing like me—when he showed me how he accidentally smeared the marker drawing on the cover of his fourth-grade writer’s journal, he said, “I’m just pretending that it’s water dripping down the front.” What a healthy response to a minor error. What did I see when I spotted the goof, which was topped with bubbled-up sticky laminating wrap? I saw imperfection. I wanted to re-do that project. And fast. But I didn’t. It wasn’t my problem to fix. It wasn’t a problem at all, in fact.

Perfectionism is not all bad. I suspect it’s the character trait that allows me to stick with exercise routines, clean diets, organized schedules, and healthy routines. It’s not all good, either, though, and honestly, I know deep down that it’s mostly detrimental to my well-being. I’ve long been aware of this, and through cancer-related therapy and anti-depressant treatment, I achieved some success curbing my pursuit of all-the-time greatness.

Then I became an editor.

What was I thinking?

Writer and editor Laura Hale Brockway says, “As an editor, the kick in the head is that no matter how hard I try—proofreading backward and forward, fact checking, checking sources, etc.—simple, preventable errors still occur.”

I know. I know. And it’s killing me.

I chose a career I love—one that kinda, sorta, pretty much requires perfection. Clients hire me to fix what they’ve missed. If I don’t catch their flubs, then I’m not really doing my job. Or so goes the story in my head.

What I must learn is that I am doing my job. And I’m good at it. I’ve been told by those who pay me to proofread that I’ve exceeded their expectations, I’ve helped them score good grades, I’ve taught them so much about the written word. Still, that missing comma or extra quotation mark, discovered long after I’ve delivered a project back to its owner, haunts me.

Perfect is an impossible goal. I am human, and humans make mistakes; therefore, I am set up to fail with every task I tackle. Sure, there may be times when I achieve 100%, but can I keep up that gig for all of time? Not a chance.

Brockway cites Joseph T. Hallinan, author of the book “Why We Make Mistakes,” who reports that humans have design flaws that set us up for mistakes. We are efficient, but also error prone. We are just wired that way, and the sooner I get over my hang-ups about getting everything right all the time, the smoother I will sail through life. Am I capable of such an undertaking? I’m really not sure.

According to the experts at the University Of Illinois At Urbana-Champaign’s Counseling Center, I should experiment with my standards for success. “Choose any activity and instead of aiming for 100 percent, try for 90 percent, 80 percent, or even 60 percent success,” they say. “This will help you to realize that the world does not end when you are not perfect.”

Yea, I realize the world will not come to a screeching halt just because I stumble when I intend to soar. My concern is that maybe editing is not what I should be doing in this world. The pressure to perform at such a high standard is just so consuming.

I don’t intend to make any big career moves at this very moment. I’m just soul searching, trying to find peace in my body so that I can enjoy more happy and less haunt.

And you do know that I’ve proofed this story about a zillion times in hopes of catching all of my blunders, right? Did I leave some behind? I’m sure I did. But I’m moving on. Really, I am.

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Give the Gift of Comfort

I know you’re probably consumed with holiday gift buying right now — I know my head is still whirling from all the madness surrounding Black Friday (no, I didn’t shop on that day) and Cyber Monday (I did order a pair of discounted running shoes) — but if you can take just a teeny tiny moment (3.5 minutes, actually) to watch this video, I think you’ll discover the true meaning of giving.

Giving Comfort welcomes donations for comfort kits that are given to cancer patients in need (donate now!). You can also purchase kits for our own friends and family members (purchase now!). I can’t tell you how many times people have asked me, “What do I get my friend who has just been diagnosed with cancer?” I usually point to books, candles, and comfy socks (these were my favorite goodies). I’m adding comfort kits to my list of suggestions. Starting now.

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Today, It Happened (Well, 8 Years Ago Today)

It wouldn’t be a proper day before Thanksgiving without mentioning that 8 years ago at almost this exact time, I was diagnosed with breast cancer. I remember where I was standing when the phone call came in (in the kitchen, leaning on the counter), what I was wearing (a white, long-sleeve shirt and shorts), what I was doing prior to the dreaded announcement (managing the chaos of my little boys and a baby girl whose mom was busy at work), whom I called immediately after the devastation (John, who was at work, then my mom, who came rushing to my house), and the numbness turned terror that consumed my entire holiday weekend. Man, that was horrible. And while I can’t say that the days that followed got a whole lot better — cancer delivers some pretty crappy moments — life did turn around, and while I was not very thankful on that pre-Turkey-day 2004, I am way grateful on this 2012 Wednesday for the mere fact that I am alive and that these baby boys (ages 3 and 18 months in the photo) are now 11 and 9.

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