my Breast Cancer blog

2004, age 34 — this is my story

Happy Holidash

Are you warming up to this holiday season, which happens to be just around the corner? I am. Well, not so much Thanksgiving—I mean, it’s OK, but Christmas is what I like most. I like hanging twinkling lights on our front porch, decorating the tree I yank down from the attic every year, burning pumpkin-pie and candy-cane candles while a fire roars in the living room, reading little-boy letters to Santa, tearing open stacks of holiday cards, and on, and on, and on. I like the whole warm, fuzzy, package Christmas delivers each year—well, except for the shopping, money-spending part.

Given my love for Christmas and all the joy that it brings, I am just loving this new blog called Holidash. It’s related to the blog I write for—That’s Fit—and it’s all about the holidays. Holidash is a fun, clever, witty, makes-you-want-more kind of site, and I find myself drawn to it whenever I perch myself in front of my computer. It’s making me want to untangle my white sparkly lights right now—is it too soon for that?

Anyway, check out Holidash for yourself, and see if it awakens your festive spirit. Here’s some temptation— a few crafty little posts sure to make you smile.

How to look hot for the holidays
How not to get fired at the office Christmas party
Bizarre Christmas album covers

Happy Holidash, one and all!

Got Brain Fog? Then read this

By Jennifer Chown, of Maximum Capacity

Health care professionals and researchers are finally beginning to accept the reality of cancer-related “brain fog,” though cancer patients themselves have been talking about it for years.

Once affected by cancer, no matter how successful the treatment, some still struggle with changes in themselves that neither medications nor therapy seem to overcome. These are the cognitive changes, or changes in the way we think.   This cognitive disruption affects as many as 75% of cancer patients and can happen not only after treatment but also as soon as the cancer is first diagnosed or first appears. Those affected describe a loss in mental sharpness that is both frustrating and life-changing. The symptoms of  “brain fog” (often called “chemo brain”) include changes in memory, trouble finding and using the right word, poorer attention and concentration, trouble doing more than one thing at a time, and changes in mood or general feelings of psychological well-being.  Each of these symptoms, either alone or in combination, can have a huge impact on how a person functions from day to day.

Scientists are just beginning to unravel why “brain fog” happens.  One culprit may be the chemotherapy itself. Some studies have shown that patients receiving high-dose chemotherapy are at greater risk for cognitive problems after treatment than patients receiving low-dose chemotherapy.  This may be why the term “chemo brain” was first coined by cancer patients.  However, other studies have shown that some patients experience “brain fog” symptoms even before any form of chemotherapy treatment has been given or after other forms of treatment such as radiation.  This suggests that the cancer itself or other factors (such as anxiety, depression, post traumatic stress disorder, fatigue, genetic factors, different treatment, etc.) may also play a role.  What this also suggests is that unless there is more concrete evidence that one specific factor is to blame (for example chemotherapy), people should not be so afraid of brain fog that they let it affect their choice of cancer treatment.

Although the exact cause or combination of causes which lead to “brain fog” is not yet fully understood, the good news is that there are ways to compensate.  The term “cognitive enhancement” refers to a method of improving the way you think.  In cognitive enhancement programs (either in small groups or on a one-on-one basis) you learn about the issues affecting your thinking and then work to become more self-aware of the mistakes being made.  Then, using new techniques and old techniques (techniques you may have been using all along) you can work to get back to better thinking.  Successful cognitive enhancement has resulted in even minor treatment effects having an enormous positive impact on the lives of those affected.

How does a person with “brain fog” begin to make changes?  First, by acknowledging the problem.  These cognitive changes are not just your imagination!  Second, by realizing that just as the physical symptoms of cancer and treatment can vary from person to person, so can the cognitive (or thinking) changes. While one person may think a little more slowly, another may remember a little less, and others might get a little muddled when they do more than one thing at a time.  So how do you know if your cognitive changes are normal or not?  Keep a log of your slip-ups.  When you review your log, ask yourself, is this normal or to be expected given my diagnosis and treatment? How is this different from how I was acting before the cancer? Make a conscious effort to reduce your blunders and monitor any changes over time. Ask yourself if your mistakes are happening more often and whether they are bigger mistakes than you used to make (for example, are you forgetting where you parked, or whether you took the car to the store at all?). Compare notes with others and openly talk about your changes and concerns with peers, family members and your health professional.  Look for local cognitive enhancement programs that you can take. There are many different causes for cognitive change.

Don’t let cancer get the best of your thinking.  Play a proactive role in your cognition. Stay mentally and physically active. Learn and practice strategies and techniques for cognitive enhancement. Talk about the changes, don’t hide them. Take the “fog” out of the cancer experience and help yourself think more clearly.

Jennifer Chown is the Programs Manager for Maximum Capacity: Strategies for Cognitive Enhancement, a company devoted to helping people improve the way they think. www.maximumcapacity.org

Boo from my boys

We hope you had a Happy Halloween. We sure did. We trick-or-treated, scored lots of candy, and are busy dishing it out with healthy-food bribes. Eat a pear, get some candy. Knock back a nutritious dinner, get some candy. Opt for yogurt instead of cookies, get some candy. Soon the bribes will come to an end, because soon, the candy will be gone. We’re at the bottom of the orange candy bowl already. How are your candy bowls doing?

Dig out your reading glasses, Elizabeth

Reader Elizabeth won writer Tina’s book — If I just Breathe — and I think she will definitely benefit from this inspiring story of one young woman’s journey with breast cancer. Elizabeth is waging her own war on breast cancer, you see, and really, there is nothing better than learning from others whose battles are won. Here is what Elizabeth writes, word for word, about her own story.

I am 44 years old and dx with IBC (inflammatory breast cancer) . Just like Tina it is a rare thing to be dx at a young age with breast cancer. Well I am still young not as young as Tina was when she was dx. I am dx with a rare aggressive form of cancer. One that is not talked about much. Doctors, nurses in the professional field are not aware of this form of BC. They treat IBC as something different. They do other things second guess. Then it gets to the point with women who are dx with IBC have to say no there must be more. Then they decide to do something about. My doctor treated me for a month for something else. Finally he did arrange for me to see a breast surgeon and scheduled mammogram and ultrasounds. When I went to get the mammogram and ultrasounds done it showed nothing, which is common with IBC. When I did she the breast surgeon, she did a biopsy that day of my appt. it came back as IBC, Stage IIIB, my tumor they removed from surgery was 12.5cm. I am still going through treatment. I believe this book would give me a lot of insight and information that will be helpful in being a advocate to others that are having to face IBC. I have enjoyed Tina’s blog. I wish her the best in her knew book. I am sure that it will encourage others. Look forward to reading it however I get it.

You got it, Elizabeth. And it’s on its way.

Click here for a closer look at the reading glasses pictured above.

Big news today

Big national news today: We have a new President and can now get on with living our lives under a new leadership. Big personal news too: I am still cancer-free and can now get on with living out my fifth year, post-diagnosis. Exciting stuff, all of it.

Monday morning, I had a follow-up with my oncologist. Everything looked good. Everything felt good. My blood is in tip-top shape. My breasts are free of lumps. No lymph nodes are protruding from anywhere on my body. No symptoms are presenting themselves. Perfect.

On Monday evening, I had my annual MRI. And just this morning, I got word from my favorite doctor that everything looked good. “Your MRI is unchanged with nothing concerning,” were his exact words. I love those words.

For me, today is off to a great start. Hopefully, a great start is underway for America too.

Giveaway: Gobs of Smoothie King gift cards

I love Smoothie King, and my friend Leah for offering so many goodies for giveaways.

I’ve got gobs of gift cards in my hands, each one good for one free 20 oz. smoothie, valued at about $5 each. I’m bundling them together in packages of five and will award five readers with one of these packages. That’s $25 worth of smooth stuff you’ll get if you win. So here’s what you’ve got to do: Leave a comment and tell me why you love smoothies. That’s it. Do it by 5 PM on Monday, November 10 and your name might just be one of the five I draw randomly from my fancy hat.

Oh, Leah wants me to tell you about a new item on the Smoothie King menu: The Berry Stimulating Maté. It’s got blackberry, strawberry, blueberry, Guayaki organic yerba maté, turbinado (save on calories and carbs and make your smoothie skinny by leaving this ingredient out) and nonfat milk. Yerba maté (pronounced YER-ba MA-tay) boasts a host of health attributes. It aids in weight control and digestion, increases metabolism, induces mental clarity, sustains energy, and lessens the effects of allergies and diabetes. Can’t beat that.

Ready. Set. Go, leave a comment now. Wait: First you might want to see if there’s a Smoothie King near you. Sadly, there isn’t one here in Gainesville. Click here to find a location near you.

Holy Money!

I’m usually not a money worrier. But I admit, this whole recent economic scare has me pinching pennies like never before. Which is why when someone from my MRI center called me today and told me how much I’ll owe on Monday when I go for my annual boob test, I felt my stomach sink into my toes.

Before I get the pleasure of plunging my naked breasts into cut-outs on a very chilly table, I will have the honor of forking over more than $300. It’s only 20% of the total cost of the procedure—whew, that’s good—but Geez, what a lot of money. It’s a lot every time I get the test but this year, I’m actually paying close attention to our credit card purchases, so it hit me hard. For a second, I even hesitated and thought to myself, Do I really need the MRI?

Of course, I need the MRI. I’m not about to duck out of the medical loop now that I know it so well, and it’s doing such a bang-up job of keeping me well. Three-hundred dollars. Oh well. I’m considering myself worth it, even though I won’t be worth as much because of it.

Click if you can

Something about this seems iffy—I mean, can funding mammograms for women in need really be as easy as clicking on a website? The Breast Cancer Site claims it is this simple, and I’ve received a bunch of chain-like emails over the years pointing me to this very site. I’ve always clicked, because what’s the harm, I figure. Either it works and someone, somewhere gets a free mammogram or it doesn’t work and then, oh well.

Want to register your own click? Head on over here for the 6th Annual Pink Ribbon Challenge. And if things are as they seem, at the end of the month nearly 500 women will get the gift of a mammogram. Can’t beat that.

You gotta be a pit-bull

I once asked a breast cancer husband how he helped his wife—who happens to be a friend of mine—survive her disease. I offered him this statement:

Surviving breast cancer can be a long haul. Be prepared for . . .

This was his response:

Battle. This is nothing short of the fight for your lives. Of course you need to be compassionate, caring, and all those other important things your wife will need, but you need to turn into the meanest, most determined, pushy, and unyielding SOB, all very politely of course, so your wife will feel there is no one doing more to help than you. Example: I have called Dr.’s offices every hour until I was able to get my wife the appt. she needs. Or, calling again and again until instead of voice mail, I get a real nurse to get a script my wife may need. You gotta be a pit-bull, see what I mean?

Enlist in the army

Dr. Susan Love told Robin Roberts yesterday on Good Morning America that she’s trying to recruit 1,000,000 women for the Army of Women, a group of women who on a volunteer basis will be part of research efforts aimed at determining what causes breast cancer. All women are invited to participate. Just sign up here. When you do, you’ll get an e-mail about opportunities for being involved.

Love reports that about 200,000 women have signed up so far. She’s got a long way to go to hit that one-million mark. Just like we have a way to go to find that elusive cause of breast cancer. Help if you can. And thank you.

If I just breathe: A book and a giveaway

Breast cancer normally affects older women, and there is really very little information about how the disease affects women under 40 (that’s why I wrote about the Young Survival Coalition in this post). But here’s the deal: Breast cancer is a devastating blow to any woman. And as new author and young breast cancer survivor Tina Koral says, “young women often face a myriad of unique challenges, including higher mortality, threatened fertility, isolation, and a lack of informational resources targeted to our age group.”

That’s why Tina wrote a book, so that she can share her story with other young women with breast cancer who need hope, and for young women who do not have breast cancer, but need to know what to look for. And that why she’s sending me a book—so I can help spread the word. And why she’s giving one away here too—so you can help spread the word.

Want to win a free copy of Tina’s book, If I Just Breathe? Take a peek at the excerpt below and leave a comment no later than 5 PM on Monday, November 3, 2008 telling me why you’d love to have this book in your hands. Then I’ll work my random-drawing magic and will announce the lucky winner in a post.

In the meantime, check out Tina’s website here. This is where you can order her book.

“The photographs from my wedding day show a joyful young couple, visibly excited to start a new life together. The promise of a happy home full of children shone in our eyes. The thrill of that day, of marrying my childhood love in a city filled with romance, will stay with me forever. What I did not know at the time was that along with something old, new, borrowed and blue, I carried a seven centimeter, rapidly growing mass of malignant cells in my breast. I was twenty-nine years old.”

Exerpt from If I Just Breathe

Pink Ribbon Day

Somewhere, I heard that Pink Ribbon Day is October 27. I’ve done some searching and determined that Monday is in fact Pink Ribbon Day—in Australia. Not sure about here in the United States, but I say we declare it Pink Ribbon Day everywhere.

Tomorrow is Pink Ribbon Day then. Which means you need to do something with a pink ribbon. Tie one in your hair. Pin one on your shirt. Paint one on your face. Dangle one from your rearview mirror. You could also buy a pink ribbon product—read this post first, though, and see how you feel about pink product pursuits. Or host a pink ribbon party. Well, there isn’t much time for that now, is there? I mean, the big day is tomorrow. Come on.

I don’t know. Do whatever you like on this day. Just try to to raise a bit of awareness about breast cancer and its implications. Consider these statistics as you brainstorm: 12,000 women were diagnosed with breast cancer in Australia last year. In 2008, an estimated 182,460 new cases of invasive breast cancer will be diagnosed among women in the United States. Ouch. In Canada this year, about 22,400 women will be diagnosed. Every year, more than 45,500 women in the UK are told they have the disease. Gosh, I could go and on. But I think my point is clear. Breast cancer is everywhere.

Let’s get the word out.

Sport a pink ribbon.

Tomorrow.

Under 40 with breast cancer? Visit the YSC

I’m almost not young enough to take advantage of this organization. I’ve got two years left. I’m 38 and age 40 is the cut-off. Well, I don’t know if the folks at the Young Survival Coalition are that strict, but the group is intended for women younger than 40 who have been diagnosed with breast cancer.

A few years ago, while questioning chemotherapy and what treatment was right for me, I visited the YSC a few times. The bulletin boards were my favorite. I didn’t ever write or respond to anyone. I just visited from afar, soaking up the chit-chat of others and using it for my own decision-making purposes. It helped, to learn about Taxol and who got it, who didn’t. I didn’t want it, you see, and I searched feverishly for other women who didn’t get it, trying desperately to justify that it was not right for me. It turns out it wasn’t right for me—Amen to that—and my argument against the drug came partially from this group of fierce women fighting for their lives.

Breast cancer is not all that common among young women, and you may find that resources and information for the under-40 set are limited. Until you find the YSC, that is. They’ve got it all. Besides the bulletin board, the YSC features programs, events, even retreats. And there are all sorts of FAQs and hot cancer topics on the website. Check it out. You’ll discover that while you may be young, you are definitely not alone.

Inspire me

This is my Danny. He’s five years old, and he can do four pull-ups. That’s four more than I can do. He inspires me. Who, or what, inspires you?

Shabby Apple offers discount to all

My Shabby Apple pals are not only giving Cathy a free dress, valued at $64. They are also giving you a 15% discount on anything in their online store. Check out their dresses and accessories here (they even have little girl stuff) and then get shopping.

To get your discount, just do this: When you are about to check out online, enter the coupon code mybreastcancer15off (case sensitive and one word).

Pictured: Small daisy hair clip. 2 inch diameter. Clip on back of flower to help hold it securely in hair. Comes in chocolate, black, baby pink and white. Price: $12.00, but less if you use your discount.

Shabby Apple has a winner

“What I love most about my body is my skin,” says Cathy in her comment for my Shabby Apple dress giveaway. “I have been blessed with great genetics and protect my skin with SPF so that I always look younger than I am. Now, I am teaching my daughter to take care of her skin, which is also beautiful. I have been every size there is between 8 and 16 and sometimes it is difficult to be comfortable in my own skin, but its mine and I love it!”

And now Cathy gets to showcase her beautiful skin in her brand new jersey dress. Yes, she’s the winner. And I just know she’s going to look smashing and dashing and all things radiant in that trendy yet sophisticated little number.

Congrats to you, Cathy. And thanks to you, my Shabby Apple friend Ashely, for making this giveaway possible.

The doctor is in

If you’re new to the world of breast cancer, you need to see this doctor. I don’t mean you need to actually visit her, but you should consult her. Her name is Dr. Susan Love and she is, like, the expert, the guru, the absolute best. When I was first diagnosed, someone told me to buy her book—Dr. Susan Love’s Breast Book—because it’s considered the breast cancer bible. It was my constant companion for a long time. Late at night, when fear raced through my head and panic paralyzed me, I grabbed the good doctor and flipped through her pages. She always set my mind at ease and while some things she told me were scary, she mostly armed me with hope.

You should get her book—check it out right here—and you should visit her website too, right here. I promise you’ll like her. She’s warm, caring, smart, and she just happens to have all the latest and greatest facts on breast cancer. What are you waiting for? Your appointment awaits you.

Just stand up

On September 5, 2008, all three major TV networks aired Stand Up To Cancer. Nearly 170 countries had access to the show, bunches of celebrities participated, and loads of money was raised—like $100 million, to be exact.

Check out this song, titled Just Stand Up and featuring artists like Mariah Carey, Beyoncé, Mary J. Blige, Rihanna, Fergie, Sheryl Crow, Melissa Etheridge, Natasha Bedingfield, Miley Cyrus, Leona Lewis, Carrie Underwood, Keyshia Cole, Leann Rimes, Ashanti, and Ciara.

Inspiring. Simply inspiring.

Cozy, Fuzzy socks

My favorite of all cancer gifts was a pair of cozy, fuzzy, yellow socks sent in the mail from a friend named Ginger. Ginger, I don’t know where you are or if you’re reading, but I am so thankful for those socks. They warmed my tootsies and my heart. And every time I look at them, crumpled and stuffed in my sock drawer, I think of you and how those socks are a testament to my survival. They are worn and dirty and the fuzzies are all flattened, which means I’ve had them for awhile, which means I’ve been alive for awhile, which means I am happily surviving the disease that prompted my friend to send me such a special package.

Four years ago, Ginger gave me my favorite socks. And for four years, I’ve been giving the gift of socks to others who need comforting. Need a gift for a special someone? I recommend socks. The cozier and fuzzier, the better. Click here to buy the ones pictured above.