Discussing Breast Cancer

Before we wrap up for the year I wanted to share one more book review with you. This book is one you should have in the house, on your shelves, as a reference manual — early in 2008 take a look at a Everyone’s Guide to Cancer Survivorship: A Road Map for Better Health by Patricia Fobair (social worker at Stanford University Hospital), Holly Gautier, RN (Cancer Concierge Services Director at Stanford Cancer Center), Ernest H. Rosenbaum, MD (a top oncologist and clinical professor of medicine at the University of California in San Francisco) and David Spiegel, MD (associate chair, Psychiatry and Behavioral Sciences at Stanford School of Medicine).

This 304 page paperback was written for both survivors and health care professionals — so you’ll read lots of information explaining how and why health care professionals should treat cancer patients. But there’s lots in it for survivors and you don’t need to read it cover to cover. It’s divided into parts:

Part I: A Physician Guidance Program — including the elements of a post-therapy survival plan. Man, I wish I’d had one of these. Kudos to these professionals and those that heed their advice. “The goal is to promote wellness through health promotion and disease prevention.”

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Thought I’d share this video of my three-year old daughter putting on a puppet show for her daddy today:

Yikes … Christmas really is just three days away. Technically, my celebration begins in two days, when my in-laws show up at my door loaded down with presents for their grandchildren. Each year, within minutes of their arrival, my brother-in-law says it looks like Toys R Us has thrown up in my living room — graphic, I know, I’m sorry. But seriously — it is all about the gifts with them. My mother-in-law starts shopping the day after Christmas — and collects gifts all year as she finds them, often forgetting what she’s already purchased, anxiously awaiting the opening so she can remember items purchased months prior. And she shops every day, it’s what she does. It’s really quite unreal.

I’m just not that on the ball (well, I don’t have the means, either, but even if I did, I’m not sure I’d be that one the ball). Admittedly, my shopping is never done until the day before Christmas so this year? I’ve got two days to finish up. And very few things are wrapped … and I’m responsible for making Christmas Eve dinner for twelve. Yeah, panic is possible … but I won’t let it happen to me. Here’s what I’m going to do and what I suggest you do as well.

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This wasn’t a breast cancer book club selection but it is a seasonal story that I recently read that I want to share with you all. It’s one for the children. As you may know, I have three little munchkins who are about to celebrate a Christmas that hasn’t been tainted by cancer for the first time in four years. This year, my kids aren’t worrying that their mommy is sick, recovering from surgery, fatigued from radiation therapy … this year my kids are joyful and hopeful and I am so, so blessed.

Next year might be different — as cancer survivors (or women with a family history of breast cancer) we always think that, don’t we? Next year might be different.

All the more reason to hold onto this year and focus on what matters. For me that’s family, faith and giving.

In October 2007 I was blessed to receive a book that encompasses all of those for me: The Legend of St. Nicholas: A Story of Christmas Giving. It’s written by Dandi Daley Mackall and illustrated by Guy Porfirio.

For anyone looking to connect Santa Claus with the birth of Christ and the spirit of giving … here’s your solution. The book’s central character is a modern day boy named Nick. Nick it out shopping with his Dad, wishing he could buy a new CD with his money rather than gifts for his brothers. Then he overhears a ’store Santa’ telling the story of St. Nicholas — a wealthy young boy who used his fortune to buy gifts for others and found tremendous pleasure in doing so.

“Overcome with joy, Nicholas understood his mission in life. This is how he would celebrate Christmas from now on.”

That one line helped me to explain to my children why St. Nicholas, or Santa Claus, was, by the grace of God, allowed to live forever serving the Lord.

It’s a priceless addition to my holiday library. Great if you are parenting with religion — here’s a link to a blog dedicated to just that. And, here’s the Amazon.com link for The Legend of St. Nicholas if you want to order it online!

It’s especially important to get through the holidays without added stress when you’re a survivor. But sometimes things get in the way of that. Today, as I prepare for my Religious Education classes’ ‘birthday party for Jesus’ and my husband’s corporate Christmas party, I feel I need a little perspective. I don’t want to yell at my kids, I don’t want to be too busy for them, I don’t want to get annoyed at incompetent cashiers and insensitive customers. I want to survive the holidays with my spirit intack.

I’m guessing your days are as busy as mine are this time of year. And, I’m guessing you might a mantra or five to help you through, too. So here you go, five mantras for survivors:

1. Take a deep breathe. Say this mantra over and over again as you shop, clean or wrap … “just keep breathing, just keep breathing” (yes, think Dory from Finding Nemo). I’m talking good, sound, deep breathing. Deep breathing has been proved to reduce tension and increase relaxation. So breathe. Literally, breathe your way through your errands and chores and you’ll find that few deep breaths does work wonders to reframe the picture you have in your mind about how it should be going and allows you to stay calm in the moments you actually face.

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Can’t figure out what to get that special survivor in your life? Think out of the box — the greatest gifts will let her know you think about this illness that has become a part of her life

How about a mammogram? Gift wrap an appointment card and put it in with a gift card bag. She’ll appreciate knowing that you’re taking your health seriously because of her.

What about genetic testing? A mother can do this for her daughter, a daughter can do this for her sisters, a husband can do this for his wife and kids (yes, even men should consider this test if breast cancer runs in their family).

Coupons to cut? I’m sure you crafty guys and gals could make a coupon book offering up rides to/from appointments, babysitting when she wants to drive herself, company when she doesn’t want to be alone. Use your scrapbooking/craft supplies and make it personal and pointed.

Of course, you can always hit up the Pink Ribbon shop or Presents for Purpose. Nothing like a pink ribbon somethin’ under the tree!

breast cancer, cancer, Christmas, gifts, survivor

I spent a considerable part of my weekend addressing Christmas cards to my friends and family and holiday card to my editors and professional colleagues. But I’m psyched; I wrote personal notes on each this year and hand wrote each address. I feel satisfied because I truly thought about each recipient as I prepared their card and that’s the way it should be, right?

Don’t stress; it’s not too late to wish all your friends and family a happy holiday. But when you’re out there shopping, consider a card that donates to the cause or raises awareness. I should have talked about this before I started talking about 2008 calendars, but honestly, I hadn’t done my own cards yet and was already looking at the New Year with anticipation.

So … keep this in mind: if you have to order online at this point, you’ll pay through the nose for shipping. But it might be worth it … consider the hope and joy you’ll bring someone this year.

My favorite cards are these specialty note cards by Mer. There are also some ‘pink ribbon’ beauties at the
Komen Marketplace. Finally, proceeds from these ‘Heartfelt Greetings’ benefit the Cancer Research Foundation.

Good luck!

Haven’t you noticed calendars are all over the stores right now? This is the time to buy one, to start marking your plans down, to start planning vacations … I’m not waiting until January to get my calendar because I’ll feel behind the eight ball and I need to get ahead of it now!

Not that I’m wishing the rest of the year away. 2007 has been a surgery free year for my family, so I’ve enjoyed almost every minute of it. But I am focused on 2008. Come July I’ll mark five years of survivorship — five years since I was first diagnosed with cancer.

I want to mark that milestone on my calendar. Of course, it won’t be my ‘five years of being cancer free’ anniversary, I had to reset the clock on that with my second diagnosis. But it’ll be in interesting year of reflection and direction for me, I’m sure.

So … I need a cool calendar to ring in the new year and while I was looking, I thought, you guys might need one, too.

How ’bout a pin up calendar featuring some gorgeous survivor babes? Proceeds go to Making Strides, an event near and dear to my heart. I wish I had the gumption to do this. Hey, any local photographers want to work with me on one for 2009? I’d love to be Ms. September!!! (That’s Geri Bell, Ms. October 2008, by the way, with some pink ribbon cupcakes - yum! Here’s a link to her story.)

Alright, alright … how ’bout one you won’t worry your husband will swoon over: an inspirational calendar available online at Zazzle’s, created by a breast cancer survivor and artist. Those botanical shots are gorgeous!

Or one specifically for mothers?
“The Hope & Inspiration: Surviving Mothers of Breast Cancer 2008 calendar is the fifth of its kind by renowned Houston photographer Alisa Murray. Featuring photos and advice from twelve Houston-area breast cancer survivors who are also moms, this calendar is a tribute to survival and mothers’ love.”

Tell your secret (and not so secret) Santa’s to get online today!

I’m continuing my research into the research findings I reported earlier. Here’s more information for you:

90% of breast cancers in women with BRCA1 mutations are not estrogen receptive or progesterone receptive and they test negative for an over expression in the HER2 gene — this is called a ‘triple negative’ in breast cancer speak. Triple negative breast cancer sounds worse than it is — there’s good news and bad news associated with this diagnosis.

The bad news is that HER2 negative breast cancer is thought to be particularly aggressive and ER/PR positive cancers feed on the naturally occurring hormones in your body. While there are drugs available to women who are HER2 positive (Herceptin) and ER/PR positive (Tamoxifen and Aromatase Inhibitors), there’s nothing yet for the women who is triple negative.

However, triple negative breast cancers do really well with chemotherapy. Really well.

Anyway, all this says to me … it is so important for researchers to keep up their efforts. It matters to the triple negative woman. It matters to all women.

Researchers have known for years that women with BRCA1 gene mutations were at high risk for breast cancer. What they haven’t known is how or why that is the case.

But now, researchers have observed that mutations in the BRCA1 breast cancer seem to be linked with the loss of a protein that impedes cell growth. A collaborative team at Columbia with Sweden’s Lund University have found that a mutated BRCA1 gene can leave cells “incapable of repairing routine DNA damage. When such damage occurs in a protein called PTEN, which regulates the growth of cells, cell growth is unchecked and tumors form.”

Their job now is to take this a step further … how can they pharmacologically or biologically increase that protein and/or repair that DNA damage to prevent those tumors from growing?

I find this particular research study so inspiring — but there are other research studies (like this one) also getting us closer to a cure. Thank you, thank you, for all your hard work!

My ten year wedding anniversary is today. Ten years ago my husband and I said our vows and pledged to be there for each other ‘in sickness and in health.’

Who would have imagined that ‘in sickness’ part would have turned out to be so much more than the flu.

My husband, God bless him, loves me so much. I think he fell in love with me at first sight. Here’s the story:

I was sitting at a table at the Black Duck Cafe in Westport, CT on a night they had karaoke — I loved going to karaoke. A young man came up to me and told me he had just paged a buddy of his so the pay phone next to my table was about to ring; then he asked me to get him from his table when it did. The phone rang. I answered then went to get the young man at his table. And sitting at that table was another young man, the man who is now my husband, and he caught my eye.

“You’re cute,” I said with a smile. “Young … but cute.” That started a courtship that I was reluctant to begin — to say the least. But he was persistent and I was swayed and somewhere along the way I became committed.

But I had him at “you’re cute.”

Several years (and quite a few ups and downs) later, we exchanged vows.

Today, my husband and I are celebrating the fact that we joined our lives in marriage ten years ago. Ten years, three kids, two bouts of cancer and one house later, we’re still committed. That is such a great, great feeling. For me, knowing my husband didn’t knowingly sign up for the role of caregiver but rose to that challenge so well means everything to me.

Thankfully, and by the grace of God, today is an ‘in health’ day and we are going to celebrate.

And you’re the caregiver. And that means so much falls on you. It’s true, you’re going to be the one bearing the brunt of the stress this year. Here’s a few pointers on what you need to do, for the survivor in your life and yourself, to get through the holidays without wishing them over!

What you need to do for her:

Grant her holiday wishes — see what traditions mean the world to her and make them happen. If that means taking her to pick out the perfect tree, then get out that day to do just that. If lights on the trees outside mean warm memories for her, get them out there. Find out what warms her heart the most and do your best to make sure that warmth permeates her soul.

Take on the givens — organize the shopping list, sit with her and some catalogs and get gift ideas then shop (!); buy the stamps, address the cards then get them mailed; pack up the packages to be shipped (and get them shipped); take the kids for a photo with Santa, take the kids shopping … just take the kids!

Limit the visits — be the heavy with a strong lead out the door to keep your visits to other people’s houses short; suggest she go upstairs and rest when your visitors are lingering too long (hopefully they’ll get the hint); use the cancer card to back out of parties you really don’t want to attend and to stop people from dropping in.

Spend quality time with her — make time to be with her, sitting with her in front of a fire, talking with her over a cup of cocoa, watching a holiday movie together — anything so she gets attention and doesn’t feel alone.

Talk to her — converse about the people she loves and point out the positives … the positive moods, the positive reactions to gifts … notice them, share what you notice, and ask her what she notices, too. Ask what is going well, what she wishes was different (knowing she’ll wish she didn’t have cancer, push the envelope to see what else she wishes was different). Talk to her — about holiday music or holiday movies, about people and animals, about anything. Just stay connected to her verbally this holiday season.

What you need to do for yourself:

Schedule personal time — head to the movies with a friend, stop at a bar for a drink, read the paper at Starbucks with a Gingerbread Latte … anything that will take your mind off cancer for at least an hour.

Exercise — it’ll keep you energized to get through your to do list and help you feel at the top of your game.

Get a good night’s sleep — you need to sleep well at night so you can go, go, go during the day. Figure out how many hours you need to function at your best and give yourself a bedtime. Then stick to it.

Eat well — in fact, eat better than you ever have. Think of food as fuel and go for premium unleaded.

Enjoy the perks — the woman you are caring for will appreciate what you are doing to make the holidays special more than you can imagine, the children who are affected will have holiday memories that aren’t tainted by cancer and the God of all things will bless you with peace, love and joy.

cancer, breast cancer, health, wellness, survivor, caregiver

Yesterday’s post is all about surviving the holidays when you’re in the midst of cancer treatment. Today I’m talking about enjoying them when you’ve survived …

Of course I want to tell you to enjoy the moments of your holiday season. I have the feeling that goes without saying, though, doesn’t it? Survivors feel so damn happy to be alive that they typically seize all the moments of their days; the holidays are no exception.

I do want to tell you what’s changed for me, in addition to the whole ‘carpe diem’ attitude that is. I just don’t get hung up on holiday “things” the way I used to. I don’t care if the outfits I wear are brand new (I’m not saying new isn’t nice, I just won’t put such an emphasis on that, ya know?). I don’t care if my Christmas cards aren’t the first received by my friends and family. I don’t care if the gift wrap I choose is coordinated and the tape isn’t perfectly straight. I don’t care if the lights on our house look a little cheesy. As long as I smile every day … and smile while I work … then I’m happy. Fulfilled.

As a survivor, I look at the big picture this time of year. I’m focused on the love and the joy and the peace and the goodwill of the season. Those things are all that matter to me.

Some of you might not be there yet and that’s okay. I understand that you’re in a new place and the holidays are just plain different. Let me share a story with you:

A woman I was friends with a while back was listening to me as I talked about living life as a survivor. I tried to explain that some days I almost forget I had cancer but I never actually forget. It’s always there, no matter what. She nodded and said, “it’s like you had to move into a house on the other side of the fence from the house you’d always lived in — one that looks exactly the same but isn’t the same at all because it’s the cancer house” and she was right. You’re all in my neighborhood now, too, aren’t you … in your new houses, too, looking over the fence at your old houses but knowing you can never live in those again.

We can’t go back. We can’t have the cancer-free thoughts that we had when we lived on the other side of the fence. But we can light our candles and drape the garlands and trim our trees and hang our wreaths and feel joy. A joy we’d never even imagined existed before.

The joy of being alive.

cancer, breast cancer, family, holidays, health, life, survivor

Whether you are in the midst of cancer treatment, in survivor mode or caring for someone with cancer, the holidays are going to happen. Cancer doesn’t wait until the holidays are over. Cancer happens when it happens.

But having cancer around doesn’t mean the holidays have to suck. Maybe things will be different for you this year. Maybe things will be different for your family. But that’s okay … different can still be wonderful. You just have to change the way you think about it.

That’s why I’m starting this three part series: to get you ready to enjoy a different holiday. Today I’m focusing on the person with cancer. Whether you were just diagnosed, recovering from surgery, going through radiation or chemotherapy … today that’s what we’re talking about. Tomorrow I’ll talk to those of you in survivor mode, the person with the physical cancer treatment behind them. Then Thursday, I’ll focus on the caregivers.

For your reference, I’m a two time survivor and just last December I had my post-Tram-flap hysterectomy while my mother endured her last two chemotherapy cycles. It was emotionally difficult to get our minds around the fact that our holidays would be tainted. We were both forced to consider our notion of what the holidays should be, what we felt we had to do versus what we wanted to do. I personally realized in that year what really mattered to me when it came to the holidays.

For example, I always spent a considerable amount of time baking holiday cookies. I was worried that things just wouldn’t be the same without them. What I realized after reflection was that I wanted the time shared with my kids baking cookies just like I’d had with my own mom growing up. It made me sad, because I couldn’t stand in my kitchen with them amidst seven layer bars, peanut butter blossoms and snickerdoodles. So when a friend of mine offered to come over and bake with my kids on my behalf, I took her up on that offer. She had a ball and so did my kids. And you know what, so did I, listening from the other room as she tried to explain to my two year old what not to do when baking cookies (like sneeze into your hand then pick up more batter, that kind of thing). She created a new memory for me that I cherish — and my kids? They had mounds of fun listening to holiday music and eating cookie dough and getting sticky licky.

What mattered was the actual experience I wanted my kids to have, not how the experience happened. I wanted to be a part of it, but I didn’t have to be central to it.

Remember, it is not up to you to create memories for your kids — they are doing memorable things all the time and making new memories of their own all the time. Letting them have good memories of their own, even if they are different from the ones you have from your own childhood, is okay.

Another point … I love a decorated home. But I don’t love a decorated home nearly as much as my mother-in-law does. So it made perfect sense for me to sit back and watch her to deck my halls for me when I was down and out. It didn’t matter if I’d done it myself; all that was important was the feeling we get when surrounded by festive beauty.

We all have opinions about what we think our holidays should be … what they should look like, how they should sound, what they should feel like. I urge you to reframe yours. Maybe you don’t need to cook the entire meal. Some grocery stores even have tasty pre-cooked foods you can pass off as your own by transferring to a pretty bowl. Isn’t the point to enjoy a meal together as a family? Or, maybe you don’t need to wrap every gift. A few strategically unwrapped gifts might actually thrill your kids. And really, do your children even notice the bows? Think about it.

And about that Christmas tree … artificial trees are really low maintenance. No dropped needles, no endless checking of the stand for water. They go up in a flash and by the way, Yankee Candle makes a really good Sparking Pine scent. If you always pick one out or cut one down, maybe make a memory picking out a special wreath that the whole family admires or sipping cocoa outside in the snow. It’ll be a new memory, but new is okay if it fits your energy level this year. Just a thought.

There are so many things you can take off your plate to make your holiday a little less fatiguing. Let people help you by shopping and baking and decorating. Let someone else do holiday crafts with your kids. Check your ego at the door (yes, you still have one, even if you think you don’t). It’s okay if you aren’t doing everything. It’s actually kind of liberating.

Cancer doesn’t wait until the holidays are over. But that doesn’t mean you should wish the days away faster.

cancer, breast cancer, holidays, shopping, baking, decorating