my Breast Cancer blog2004, age 34 — this is my story |
Here’s a quick on-line survey for those of you who were diagnosed with cancer under the age of 40, and who would like to share some thoughts about the use of mobile and Web-based technologies for coping and complying with cancer treatments.
Sponsored by the Adolescent and Young Adult Cancer Advisory Board, UC Davis Cancer Center.
No identifying information will be obtained and participation implies consent.
And by quick, I mean it only takes a couple of minutes.
Photo: "passamanerie", Flickr
It’s got to be one of the hardest things about cancer — hair loss! And I know my friend is hating the idea of being bald, just like most of us do, but still, she is handling it with such grace. Her technique: she cut her very long hair very short in anticipation of the big fallout. I like her approach, which is so totally different than mine.
I kept my very long hair around until the very last moment. I think I wanted so badly to not lose it, that I fought back by making not one single preparation. Silly me. The docs and nurses and every other breast cancer survivor I’d met told me it would happen, plus pretty much exactly when it would happen (about day 11-16 after the first chemo treatment), and still, I crossed my fingers tight and hoped like mad that I’d be the exception. And on the day of my second chemo dose (day 14), I wore a hat on my head to hold each hair in its place — it was starting to fall out in clumps, wash away in the shower, and it was pulling so hard on my head it hurt — when I should have accepted the inevitable and surrendered. I did surrender that night — cut off three ponytails, and handed the clippers to my husband and 4-year-old, who shaved while I cried — but only because I could no longer hold onto the hair I so desperately did not want to lose.
My friend has accepted the inevitable, and I love that about her!
How did you handle your hair loss?
Photo: One in a Million
My boys have summer journals, and they’re writing every few days to keep their skills sharp for the 2nd and 4th grades. I’ve been writing along with them, because I want to show them I’m not afraid of a little summer work, and well, because, writing makes me happy, and it helps me process all of life’s twists and turns. And that’s sort of what I wrote about today in my black and white composition book — getting through the ups and downs, and cutting down on stress.
My essay turned out to be a list, and here are 12 of my ideas for finding peace. Might want to try a few if you’re searching for a little calm.
Gosh, it’s hard to stop at just 12.
Would love to hear your ideas — if you share, I’ll add them to my list.
Mammogram is done.
So is my uncertainty.
Everything is good.
Next up: MRI in November.
Photo: waterrose, Flickr
I’m not sure how my birthday and my annual mammogram ended up sharing the same week, but gosh, how bad is that going to be if something fishy turns up the day after the happy occasion of turning another year older? Yikes. Everything turned out A-OK last year (mammo the day before my birthday), so fingers crossed the pattern continues.
This morning, my boobies will endure the ceremonial flattening (think Jack Black, plus a lot more skin), and I can only hope that I return to announce that they are just fine and dandy.
Pretty blue robe, here I come.
Photo: Temari 09, Flickr
The American Cancer Society folks claim to be the official sponsor of birthdays. Well, if they are, I thank them for sending another one my way.
Today, I get to face 40 candles — well, I’m not sure anyone is really going to top my strawberry shortcake with that much wax and fire, but somehow, with some configuration of candles, I’m going to be closing my eyes, wishing hard, and blowing out little flickers of light.
And my wish?
Simple.
I want to see be around to see 41 candles next year. That’s all.
Photo: LaserGuided, Flickr
I’m a grateful girl. Really, I am. In fact, I can’t even put into clear and concise words how very thankful I am for the breast cancer treatments that have kept me alive for five years. If I even try to put my thoughts into words, I promise you tears will stream down my cheeks. I’m about to turn 40 on Sunday, and WOW, I wasn’t sure I’d make it to that age, what with birthday No. 34 followed by such fear and uncertainty.
Just so we’re clear: I am so. very. happy. to be alive and writing this. I’m simply amazed by what medicine has done for me.
I’m amazed by what medicine is doing to me, too. Five years later, and it finds a way to make me a little bit miserable. Right now, actually, a lot miserable.
I’m covered in red, itchy, drive-me-crazy bumps on my shoulders, chest, back, and areas around my armpits. It happens every year, and it’s called something like UV Recall. Years after treatment, the sun reacts with my skin and the poisonous drugs, and the remnants of radiation, and sunscreen (I’m not sure about what order this all follows or if it’s one or several of these factors), and my skin pays the ultimate price. You’d think I’d have figured it out after all this time, but I haven’t, because sometimes (like last year at the beach), nothing bad happens. I find a sunscreen for sensitive skin, lather it from head to toe, and I’m just fine, maybe even a tiny bit tan, which is a treat for a fair-skinned gal like me. Other times (like this year at the beach), I find a sunscreen for sensitive skin, and, well, the bumps begin — just a few here and there, then some more, until they’ve climbed all over my body, making me more and more wacky by the day.
“Are you not so happy?” Danny asked me today.
Gosh, how I’m trying to be happy, plodding along through these summer days like everything is fine. But it’s not. I’m itchy and scratchy, showers hurt my skin, clothing bothers it, too, the Florida heat (it’s been like 100 degrees here lately) agitates every inch of me, and well, no, Danny, I am not so happy. (Add head cold to the equation, and you might imagine how poorly I really feel.)
The end is near, I know. The bumps will dry up and slowly disappear, and I will do what I always do — slink into the shadows at the pool, sit under an umbrella at the ocean, hide under the bimini of a boat. It’s no fun to be the mom always seeking shade and avoiding fun in the sun. I guess that’s why, year after year, I keep trying to jump waves, and find sea shells along the seashore, and splash in the pool — because I want to think cancer treatment won’t keep plaguing me. But it does, and it probably always will. And that’s just how it is. The very thing allowing me the pleasure of birthdays is torturing me, too.
OK, I’m getting a grip here. This skin ordeal is short-lived. It will consume about a week of my life (couple more days to go), and then I’ll move on. Maybe I’ll even be free and clear by Sunday, when I blow out 40 candles and celebrate another year of life.
See, I’m grateful. Really, I am.
Note: If you caught this post just as it published, you got a glimpse of what I look like. But the photo I put up at first has been taken down. It’s just too icky, and while it’s definitely educational, I decided to shield you from the yuck. And me, too. Looking at the mess in the mirror is enough. Online is just too much. And so I give you: flowers, pretty flowers.
Got a mission for you:
1. Click here.
2. Type in your mantra or message of strength. Mine is there. Go see it.
3. Hang out through June 18, and see if you get an email announcing that you are the! big! winner! You just might be, never know.
More about it here, including the prize that could be all yours.
Vote right now! And thank you!
My new two-time-cancer-surviving friend Rebecca needs your vote. You see, she is trying to get a charity called Hair 4 You off the ground. It’s a great one, and the goal is that it will provide free wigs for kids and teens with medical hair loss. In order to make it all happen, though, Hair 4 You needs to become an official non-profit 501(3)c, which means Rebecca needs some funds.
No, she doesn’t want your money, just your vote (voting is absolutely free and requires only an email address and password).
So, can you pretty please stop by the Pepsi Refresh Challenge website and cast your vote for this 24-year-old, who would really love to win a $25,000 prize. Imagine what she could do to brighten the worlds of young people who just want to feel normal. And hey, you can vote once every day, so start now, then keep voting through June 30.
Rebecca thanks you.
I do, too.
Also, you should consider becoming a Facebook fan of Hair 4 You. This way, you’ll get updates on how Rebecca’s cause is coming along.
What do more women suffer from than breast cancer?
Eating disorders.
How’s that for perspective?
For more information and inspiration, visit Operation Beautiful, and change your life on post-it note at a time.
deviantjeans.com
Here it is, as promised: the “Message of Strength” contest, sponsored by Deviant Jeans.
It’s really quite simple to participate — just submit your personal Message of Strength or mantra on Deviant Jeans’ Facebook page, and the crew over there will chose a winner based on originality, strength and how well it could translate into art.
If your words win, you’ll receive one free EMPOWERWRAP (valued at $75.00) with your message inscribed, and the artwork created from your submission will be added to the Deviant Jeans Gallery, titled with your first name.
OK, ready to play?
i2y.com
70,000 young adults are diagnosed with cancer every year. Survival rates and quality of life have not improved in 30 years.
This is not OK.
That’s why the I’m Too Young For This cancer foundation exists, to ensure that every young adult affected by cancer is given access to the best age-appropriate support so they can get busy living at every stage of their survivorship.
Oh, and they’ve got local chapters and way cool gear, too. (See bracelet to the right.)
Your mission: check out the i[2]y website and follow on Facebook, too.
deviantjeans.com
I’d love to take this great story about Deviant Jeans and put it into my own creative words, but I’m afraid I just wouldn’t do it justice.
So, I’m going to do what no writer really ever wants to do — copy and paste.
It’s the only way, though, for you to feel the emotion that powers this company.
Yes, I’m cheating a little. But right after I cheat, you’ll find something I did work on myself — an interview with Deviant Jean’s Kristin Dudley.
OK, here goes:
Deviant Jeans began in a hospital room at the Dana Farber Cancer Institute when a genetic counselor broke the news that Kristin Kantner’s mother, Doris, tested positive for a gene no one else had. After a moment of silence, all her family in the room began laughing at the notion that within their perfect mother was a little deviance — a “deviant gene.”
Kristin’s mom, a positive, independent, and fashion conscious woman, recognized during her cancer treatments that she had to compromise her style in order to be comfortable and compliant to doctor’s orders. As side effects of her treatments persisted, she found buttons, zippers and the basics of adorning regular clothing a challenge. Kristin watched her mother struggle to match practicality, comfort and fashion and decided to take action…
Kristin collaborated with her entrepreneurial neighbor and friend, Jane Hoffer, and by a twist of fate, the two met Kristin Dudley, a Philadelphia based fashion designer focused specifically on designing for women’s wellness. After a year of planning, designing, and caring, Deviant Jeans™ apparel is now “MADE WITH LOVE IN PHILADELPHIA,” and available to women nationwide.
And now for the fancy interview:
Tell us exactly how some of your products make life easier for cancer patients.
A major consideration in all of our designs is for our apparel to transition from every day to treatment days, without the need to disrobe when receiving chemotherapy or undergoing testing. The Deviant Heart Camisole is especially helpful for women undergoing breast cancer treatments. It is designed with a comfortable shelf bra, and features a contoured neckline to allow for easy port access. The straps are wide, which alleviates the shoulder of the digging and indentations that typically occur from bra and spaghetti straps.
How do you determine what women need?
I have been designing products and apparel for women’s wellness for the past 4 years. Throughout this time, women have approached me with requests for apparel designed to suit their changing bodies and lifestyles. I began receiving faxes with hand drawings of what they were seeking! I have met with many medical professionals as well, who also influenced my design. I address the construction issues, and then I add style!
You’re not just about selling stuff — you’re charitable, too. Tell us more.
When initiating Deviant Jeans, there was one thing that was clear between my partners and myself: we are here to make a difference, not a fortune. We decided to give the customers the unique opportunity to choose their preferred charity they wanted a portion of their purchase to benefit. We offer a list of different charities to choose from at our online checkout, and accept requests from those who wish to support their local support group or other charity.
Name one great clothing tip for women making their way through treatment.
Light layers are essential! Hospitals tend to be very cold inside, yet at the same time, you never know when a hot flash may pop up. Begin with your favorite camisole and layer with a loose fitting button down shirt or tunic. Bring an open front sweater or wrap to wear on top of that. Have fun with your middle layer — seek brilliant colors and wild prints! Think of your clothing as your armor, and fight your battle boldly!
Pretty cool, stuff, isn’t it? Well, it’s going to get even cooler, because very soon, Kristin and I are going to be sponsoring a fun contest. Called “Message of Strength,” it involves calling up your artistic talents, and it could win you a free EMPOWERWRAP. More to come, so, keep checking back.
Get a mammogram. Jack Black did. Well, sort of.
For more information, scoot on over to Men for Women Now.
Photo: pasotraspaso, Flickr
WebMD says: “Polio, an infectious disease caused by a virus that lives in the throat and intestinal tract, was once the leading cause of disability in the U.S. Since the introduction of the polio vaccine in 1955, the disease has been eradicated in the U.S.” I can see online nursing programs teaching this definition because it’s not too bad.
Wouldn’t it be such happy news if an important website could spout out something similar about breast cancer?
If may not be too far off, says Cleveland Clinic immunologist Dr. Vincent Tuohy, who has hopes of introducing a breast cancer vaccine within 10 years. He’s got the science on his side, he just needs funding.
Ah, hope.