Bryan

INDIANAPOLIS, INDIANA -  This is Bryan. He’s just a regular fella, if your definition of "regular fella" includes "genius" in the description. He’s an oncologist and a researcher, a combination I have found to be life saving. Just speaking personally, of course.

He's a researcher at IU Simon Cancer Center and also works at the Vera Bradley Foundation Breast Cancer Research Laboratories. He’s made a pretty important discovery about neuropathy which could help countless cancer patients.  (neu*rop*a*thy – noun. Disease or dysfunction of one or more peripheral nerves. ) Older people and African-Americans seem to be most at risk for this development, which is often terrible and debilitating. Genetic biomarkers, for those of you that might not know, are the hot item in cancer research. HOT. Item. :)

I read this article with particular interest. I sit on the Grants Review Board of the American Cancer Society’s  Tumor Biology and Genomics division, so it fascinates me. I liked what it had to say, the potential for the future, the hope that is sandwiched between every line. I do have a favorite part of the article, however, the one that makes me smile the most.

Dr. Schneider  is …"the recipient of the 2011 Advanced Clinical Research Award (ACRA) in Breast Cancer." 

I like that because Bryan is young. For the record, I know several of his patients personally and they refer to him as "adorable." But I digress. Bryan is young, gifted and already finding things that will help us old cancer patients get by. His potential is of a breathtaking scope; and allows us to dream of the biggest things he can accomplish. 

I want my children to know Bryan. To know him as the man that took care of business. That eliminated a big worry from their lives. Go go go, Dr. Schneider. We all love you, are proud of you and are honored to be among the many who help you with our funding. 

Photo: Courtesy of Indiana University Melven and Bren Simon Cancer Center

Alex

WARSAW, INDIANA - She was 10 years old when I picked her up early from school that day, and she had no idea why. She jumped in the car and said "Where are we going, mama?" and smiled with her whole face. Nowhere, honey, I just have something to tell you. And it was the something I never wanted to tell her. In the long list of things I've had to tell her that are difficult, that I can't explain, that I hate hearing come out of my mouth, this one is really high up on that list.

I told her I had cancer. She was little, but she knew full well what that meant. She didn't have a grandma because of cancer; we did all of those walks, those runs, those activities to help put a stop to it. But we didn't stop it before I had to tell her those words. How do you explain to a 5th grader that we might be ok, including the baby inside me? How do you tell a 5th grader who's eyes just say "Don't leave me, mama!" but her shaky little voice says "What do we do now?"

She beat you, cancer. Even though she didn't have it herself, like anyone in a family that has this disease, she fought it just as much. She came through it as she always does - like a shining star. She has spoken at events to keep fighting you, she has been to cancer centers across this whole country and isn't afraid to hug every single patient she sees. She turns 17 today, and I am ferociously proud of her. And will be for as long as I get to live on this earth - and even beyond that. Happy birthday, my angel.

George

INDIANAPOLIS - This kind of says it all. I am here, as is my son, because this wonderful man made this wonderful decision. God Bless you, George Sledge.

Arlene & Jessie

GRAND RAPIDS - Arlene and Jessie. I put their names on this blog post for the same reason their daughter/granddaughter mentions it on this page - because they matter, still. Because the loss of these woman inspired Jo-Anne and Caitlin to do something that might make a difference. Because of their fight with breast cancer their loss caused absolute anguish for her children, grandchildren and her friends. And because around the world, there are a few rare corporations that realize you can do something good for society that is also good for business.

Arlene’s daughter is Jo-Anne, Jessie's granddaughter is Caitlin. They work for a company that makes trash carts. Think about that for a moment; trash carts. While now you might know that fabulous pink cart that makes a splashy statement for your recycling, a few years ago no one would have made that connection. Jo-Anne made a simple suggestion at a company meeting - she works for an employer that "encourages its employees to think creatively and be entrepreneurial." She suggested a simple donation of every cart to the American Cancer Society, and "make ‘em pink."

Her reasons were personal, of course, but she saw a bigger image - one of the world needed to do something good for everyone. And it has caught on like wildfire, let me tell you. Jo-Anne’s tribute to her mama has put pink carts on sidewalks all over the United States and parts of Canada. Caitlin is the social media guru who brought it all to the attention of the rest of us, and so many have been touched. Caitlin said that they never expected the breast cancer community to rise around them and embrace them this much – they are just floored by the responses. I’m not at all surprised about the outpouring of emotion shown when people purchase these items and tell their stories. Not surprised one bit; my inspiration was named Roberta. I’ve not done anything nearly as grand or sweeping as Jo-Anne and Caitlin, but my mama mattered too. Our mutual love of our mothers keep driving us daily! Thank you, Jo-Anne, and Cascade Cart Solutions. You are so wonderful to help all of us survivors kick cancer to the curb!

Today

BROOKLYN, NEW YORK - I hope you have a good day today, my friends. I hope it is filled with joy and light and laughter. Even if it isn’t, even if you encounter a struggle or challenge, please know that there are others who face things even worse.

Thinking of you, Nathan, Elisa and little Sadie. I hope you raise enough to relax and enjoy every second you get with one another. And I hope we raise enough money for research so that Sadie never has to hear "cancer" again.

Winning

WORLDWIDE - Quite recently, a well-meaning person was quoted as saying that we are "winning" the war on breast cancer. This made bloggers, oncologists and families across the world cringe a little bit. I can’t tell you how many conversations I’ve had with people after that made the airwaves, most of them were with people who were angry. Not upset, not discouraged, but angry.

One friend reminded me gently (well, ok, not TOO gently…) "Well what about you, Heidi? Did you for one minute think that you had won, that you had beat this thing and were out of the woods? Of course not, when your oncologist said ‘remove surgically to test for cancer’ two months ago, you weren’t surprised at all. Went ahead with a complete mastectomy. That’s NOT winning." She’s right.

The collective conscious of cancer survivors is absolutely that of a warrior nation. We know words like finite and planning, and have to think about them all the time. I go to oncology wards across the nation all the time, and we are not a group of people who are neither forgiving nor forgetting of our cancer. I’ve learned that people don’t want to settle for just the following:

• Better treatment


• More targeted therapies


• A cure (really!)

What I’ve heard from the collective at large is that we want prevention. This disease is sinister, and we are no less deliberate in our plotting to destroy it.

I don’t think the statement was meant to be cruel, to be self-serving, or to be crass, I really don’t. I think it was something said in haste from someone who hasn’t been around a cancer patient in quite some time. It made me angry to read, but then I reflected and decided this; what a blessing it must be for her and for everyone. They are the ones who might have had to be in a chemo ward before, but haven’t been so in a long while. We need to not fight amongst ourselves, cancer family. We need to pull together, educate each other and get ourselves into a tight Phalanx formation to win this battle. I.AM.SPARTACUS. :) (well, at least I have gladiator sandals...)

Knowledge

FORT WAYNE, INDIANA - You don’t know everything. Just keep that in mind about … well, about almost everything! No matter how experienced you think you are, no matter how well-versed or studious, someone can always teach you something valuable.

I went into my mastectomy two weeks ago with about as much information as the average layperson could acquire; after all, the world now has Wikipedia so knowledge is just a click away! (Just kidding, go to your doctor with medical questions. Period.) I’ve been speaking about breast cancer for five years now, having gone through allllllmost every part I thought I knew just about everything a person could go through. Chemo, check. Radiation, check. Multiple surgeries, check.

Then I was introduced to something they call "drainage tubes." I’ll not say anything more about it, suffice it to say "ouch." All of those years I had been asked about my mastectomy (which was a partial, no tubes, five years ago) and I never had a response when asked about things like tubes. And reconstruction? Never had it, just walked around like Frankenstein’s monster and didn’t give it another thought. Well, now I’ve had both. I didn’t do it for kicks, there was yet another suspicious mass found and since it was the third in a year, it was decided that a complete mastectomy was a viable option. That way, all tissue can be checked and help answer these nagging questions. (I’m happy to report that all was found to be clean and clear, yay!) But, for years I have spoken to women who have talked to me about theirs, and their reconstruction following and I could only give a sympathetic hug and utter "I’m so sorry!"

But, now I know, girls. I get it. I’m so sorry I didn’t know until now what you’ve been through! I now have a full list of things to suggest when getting gifts for a friend going into this surgery. I now can offer tips and ideas about how to make yourself feel better afterwards. Everything has a silver lining; I think for me without question, the fact that I can help more people with firsthand knowledge is it. If you find yourself or someone you love about to step into that world, here are few links to help you with questions. But again, please talk to your doctor for specifics about your particular case.

Resources:
Indiana University Melvin and Bren Simon Cancer Center
American Cancer Society
breastcancer.org
American Society of Clinical Oncology
caring.com

Risks

INDIANAPOLIS - There are a few women who, immediately after being diagnosed with breast cancer, have the presence of mind to know that they want reconstructive surgery following the removal of a tumor. Some of us are baffled by the information, overwhelmed by the data and options, and quite frankly, terrified about all the other stuff we have going on at the time. Our thoughts focus on how to get rid of the bad tissue and can’t grasp the importance, if any, of rebuilding what’s left.

I tried in vain to explain to my 9-year-old daughter what was going to happen when I had my partial mastectomy a few years ago. She, being a fan of science fiction, asked if I would consider getting some sort of a laser gun installed instead. That way, I can be a superhero. Let’s face it, she said calmly, you just told me you were going to be wearing a wig. Why not a cape and secret weapons as well? That kid. Always bringing something never previously contemplated into the conversation.

So now we learn that a super-special risk called ‘anaplastic large cell lymphoma’ could be a potential side effect of reconstruction with implants. The American Cancer Society says that the risks are small, but risks nonetheless.

In my personal opinion, any time you go in for a surgical procedure, there are risks. You know that because you are asked to sign forms attesting to that fact. Sometimes myriad forms, but that’s a blog for another time.

Some of us, and I mean US quite literally – I have friends around the world who have written to me - are looking at doing this surgery soon. A few are doing mastectomies to remove questionable bits and pieces (me) and then ‘completing’ with reconstruction. Some of my friends have waited after their mastectomies for years and have decided this is the time to do reconstruction. Some of the gals who are new to the club are getting it all done at once. No matter why, when or where the surgery happens, I am right there with you, my sisters. Because I know that every single thing in life carries a risk. Somehow we try to find the right path and just pray like crazy.

As long as we know we have company along the road, it kind of makes it all worthwhile, doesn’t it?

Eyebrows

BRISTOL, ENGLAND - According to the American Cancer Society,
“If hair loss does occur, it most often begins within 2 weeks of the start of treatment and gets worse 1 to 2 months after starting therapy." This is what you read in the brochures, along with an extensive list of helpful tips. Truly helpful – did you know that you can get a prescription for a wig, as the cost is often covered by insurance? Wonderful!

Way down toward the bottom of most websites lists of tips is to be careful with eyebrows, perhaps eyelashes too. From my perspective, once you have plowed through all the top-of-head hair loss, you are spinning with overwhelming info. You might miss that bit of info, like I did. I had a dear friend who tried to walk me through an installation of false eyelashes, and that had disastrous results. Helpful tip from me to you: if you are diagnosed in October, don’t just run out and buy the first set of eyelashes you find. Be sure to check to see if it has ‘Halloween special fright night length’ on the lash box. Ok, on to the story.

So I am a novice (at best) when it comes to makeup. I didn’t know I would lose my eyebrows, and that makes a huge difference. People can handle gals with really short or no hair (perky! cute! pixie! are words that spring to mind). But lose the eyebrows, and people have a hard time with that one. They blink, frown, and then it hits them. OOOOOOOHHHH she’s in treatment. And that must be a wig. Ooooooohhhhhhh.

So I am on twitter with my friend, Nick, from Bristol. Nick is a make-up whiz and was guiding a lady through how to pencil in some eyebrows when chemo had so helpfully removed them. I wanted to share his tips with you. Nick, thank you. For helping that patient, for reaching out and chatting with me, and for being so willing to share your expertise with others. I know that your Mum’s chemo starts in a few days; you will both be in my prayers.

NICKS TIPS ON HOW TO ACHIEVE THE PERFECT BROW:


* To get perfect brows, you can use a brow pencil or brow powder. You do not need to spend major money on this, Rimmel Londondoes a fantastic pencil with a few shades, and Body Shopsells fantastic powders. Use ashy brown colours, even if your hair is naturally black because black is very ageing. If you use a powder, then you need a good angled liner brush.

* Use a pencil or shadow brush as a guide. Lay it against your nose and point it up towards your forehead. Where your brows should begin is where the pencil hits your brow bone. Turn your guide so it meets the outer corner of your eye. Your brow should end at this point (on the bone).

* The highpoint of the arch in your brow should be just past the outer edge of your iris.

* If you create 3 'points' with your pencil, then you can create a basic shape for your brow.

* Use small 'feathery' strokes with the brush or pencil. Upwards until you hit the arch, then downwards from the arch to the outer point. This way, the strokes looks like hairs. If you draw a line, it looks unnatural.

* Soften it using an eyebrow brush along where you have put the colour.