Discussing Breast Cancer

How does a woman without her two main abdominal muscles muster on the ski slopes? I’ll tell you in a minute. First, here’s some background:

My husband and I used to ski quite a bit. We belonged to a ski club called The Ski Bears of Connecticut (a club for mostly single people [or couples without children] who were passionate about both skiing and, ahem, socializing) — we went on several fantastic ski trips a year until I got pregnant with our first. Three kids and two breast cancer diagnoses later … I’m a completely reconstructed woman and I doubted I had it in me to take on a mountain.

However, we’d always wanted to get our kids out there on the slopes. We wanted them to learn the sport while they were still close to the ground. We’d always envied and admired people that had been skiing since childhood and saw those kids skiing around us as fearless wonders.

Our oldest is eight — it was time to act before we missed out window with him. We chose the day. We chose the mountain. We picked up rentals (having sold our own equipment years ago b/c it was getting outdated). The only question was … could I still ski? I tried ice skating earlier this winter and the only trouble I really had was getting up off the ice once I went down. But my will to ski was strong — and at least I had the mountain and my poles by my side to assist me if I fell.

At 10:00 am we brought the boys to ski school. Shortly thereafter, we hit the slopes with our daughter. We traversed to the lift. We waited in line. It was their turn first. I got on the chair behind them. So far, everything was going smoothly. As I headed up the mountain I started to wonder. If I could no longer get up off the couch without help, how would I compensate getting off a ski lift? I lifted the bar. I lifted the tips of my skiis. I held my poles in one hand and pushed off the side of the chair with my free hand and I was off.

I was thrilled. I was comfortable. I was confident. I was able to ski.

The entire time the boys were in ski school, I skied alongside my husband/daughter team (she was between his legs the whole time so they really were a single skiing unit for the day). When the boys’ lesson was over, we grabbed a quick lunch, then headed out. My daughter was still skiing with my husband, the designated partner for her because he was clearly the strongest, most able to keep her safe. My oldest was fairly proficient at the sport after just one lesson, needing a little help when he fell until he learned how to get himself up, but otherwise skiing strong for his first time out. My middle son … well, he needed his momma.

At six years old, my middle son had the desire to ski on the bigger slope, but a fear of falling that I understood pretty well. He hadn’t yet achieved the ability to stop or turn — he really needed more time on the bunny hill but we wanted him to stay with us.

So there I was, a woman with a belly made of mesh, snowplowing beside him, giving him the handle end of my ski poles to hold, escorting him down the mountain time and time again. He loved it.

Not only could I ski … but I could ski with my kids.

What’s your biggest feat post-TRAM flap?

breast cancer, cancer, children, health, health and wellness, ice skating, kids, skating, Ski Bears, skiing, TRAM flap, wellness

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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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

This year I’m hosting Thanksgiving dinner for 18 family members. Both my side of the family and my husband’s will be coming. So I’ve been preparing; shopping, cleaning, you know the drill. (Check out this countdown on Kids Dish if you are feeling overwhelmed and looking for help getting organized!)

The problem I keep running into is that I keep getting choked up.

Last Thanksgiving my mother was in the midst of chemotherapy and I was about to undergo my hysterectomy. We enjoyed ourselves with the big black cloud hanging over our heads but still, it was there. It wasn’t out best year, to say the least. This year feels so celebratory for us. And by us, I mean me and my mom. We keep talking about how blessed we are, how thankful we are … to be alive. To be spending Thanksgiving with our families again. I’ll bet that’s what the Pilgrims really felt … relief and joy at being alive. Thanking God because it was clear to them that He provided for them.

It is different for us, however, because the connection to God’s provisional care isn’t as strong. Most of us work to earn the money to buy groceries from a store. We aren’t sowing our land and reaping what we sow. But those Pilgrims … well, they knew that the land was feeding them and God created the land and they were thankful.

In the case of me and my mom … we know God provided for us. With doctors and diagnostics and caregivers. We knew and we are thankful.

This year we give thanks to God, for:

• Doctors, nurses and other health care providers
• Mammography, ultrasound and other diagnostic procedures
• Healthy breasts, healthy ovaries and healthy bodies
• Family, friends and neighbors who are both
• Flowers, fruit and gifts bestowed upon us
• Sunshine, rain and the wind beneath our wings
• Paid work, pro bono work and the opportunity to volunteer
• Children … mine, yours and everyone’s
• The gift of an earthly life and each day we are gifted to add to it

What are you most thankful for?

cancer, breast cancer, Thanksgiving

I just read a post at another site about a young woman — 23 years old Amanda — whose mother was diagnosed and treated for breast cancer last year. It has me thinking about support, how I was supported during my treatment, how a local mother is going to be supported during hers … and how Amanda’s family was supported during her mother’s treatment.

See … people did wonderful things for Amanda’s family.

“People sent their cards, their love, and their well-wishes in droves. People we didn’t even know came to us with their own stories of cancer, some positive and some not so positive. People sent flowers and gifts: A girl I worked with, who had never even met my mom, gave her a beautiful crystal bracelet made especially for breast cancer awareness. My boss at the time gave me all the time off in the world so that I could be at home for surgeries and treatments.”

When you are dealing with cancer, little things really do make a difference. So if someone you know is facing a diagnosis, heed my advice. You can do your part to help.

• Write a handwritten card.
• Send a gift (or gifts for the children/spouse in the house).
• Make meals … not just dinner, either; deliver bagels or muffins, deli meats or breads.
• Bring over treats and snacks (especially good for those kids again).

But you can do other things to help, too. Here are a few of my favorites from my experience:

• Bring them a Soduko book and teach them how to do it. To this day I think of the woman who did that for me whenever I pick up one of these puzzles to do.
• Compile a CD of inspirational, celebratory or empowering songs. I love the CD that a friend of mine made just for me during that time.
• Help children express their love and support. One mom helped my son make me a gift (a beaded necklace) when he was at her house for a playdate with her son.

There’s so much you can do to help someone in need. Be creative, be thoughtful … and be inspired!

Housekeeping details: There’s still time to enter the Belkin iPod nano case giveaway.

Since I was diagnosed the first time in 2003, I haven’t heard of anyone in my community being diagnosed. Not that someone hasn’t been, it’s just that the news didn’t hit my front step. However, that changed the other day, and I’m consumed with emotion over it.

There’s a mother living not to far from me, This Mom with four children (some of our kids go to the same schools) who found out last week that she has breast cancer. She had her lumpectomy this week and the surgeon performed a sentinel node biopsy. It was positive, though the tumor was removed. Full pathology most likely isn’t back yet.

My heart is broken for this family, not because This Mom is living on borrowed time, but because I know the heartache This Mom and her entire family must feel. The terror of a diagnosis. The uncertainty as to what treatment will be like for them. The fear of the future. It hurts, so badly, and nothing anyone does or says can help that. That’s just heartbreaking for me to ponder again.

My own diagnoses were so horrible to digest.

So please, pray for this This Mom and her family, send me emails I can print out and deliver to her (click on the contact me icon to the right, change the subject line from website feedback to For This Mom and type your message in the box), and remember that this is when the sisterhood kicks into full gear — when another member is, unfortunately, initiated.

Once upon a time, I started a blog with the goal of empowering today’s breast cancer survivors. I called it The Breast Blog and using blogger as a platform, posted about myself and the things I’d come across in the world that meant something to me as a survivor.

One day I learned of a young man named Matt, an 18 year old student whose mother, Janie, was fighting a breast cancer recurrence.

Matt had this great idea — to raise money and support for his mother. He called it, Faces for a Cure. I jumped on this — maybe because I knew what it was like to be the mother of a son, maybe because I knew what it was like to experience a recurrence, who knows.

So time went on, my life went on, I came here to start a new conversation …

Today I learned that Janie lost her fight. Yesterday. I am so … word can’t even come. I’m completely broken up about this.

Janie’s death is poignant to me for so many reasons: I didn’t live near Matt and Janie, yet the Internet made me feel close to them. I’d never met Matt, yet something about his efforts made me feel proud of him. I’d never met Janie, yet our shared experiences made me feel akin to her.

The problem for survivors is that each time one of us loses the battle, we feel vulnerable to attack, frightened we might also be defeated.

I’m going to post the first comment today … for Matt and Janie.

I suppose I’m no longer a young survivor, huh?

My family and friends threw me a huge celebration this year. My favorite place, my favorite people … it was a perfect evening.

I felt so blessed to be turning 40. I mean geesh, I almost didn’t make it there, ya know? So I really looked at this one differently than most of my friends. Instead of dreading getting older, I just kept thinking, imagine if I’d have waited until this year to get my first mammogram? Imagine? How much would my cancer have progressed in the last four years since I was first diagnosed?

I am so blessed.

Anyway, I share this with you all, not because I want to hear ‘Happy Birthday’ yet another time, but because I want to remind you all to celebrate your milestones the way you want — you are worthy of the best, most extraordinary affairs if that’s what is in your heart or the quietest, most intimate encounters if that’s your preference.

For me, there will never be another 40th birthday … and the celebration my friends and family threw in my honor was the exact one I’d previously imagined in my heart.

If you guys are reading (and you know who you are) … thank you!

Last week I posted about Ford’s Warriors in Pink campaign and promised to send the baseball cap Ford’s people sent me to someone who left a comment on this site during the week. Well, Sherry Smyth is the winner of that contest and I couldn’t be happier because she’s been such a loyal reader of this blog.

Sherry is a a two year and counting breast cancer survivor/thriver diagnosed in her 40s, living and loving life better than she ever did before. She’s Her2+ — many of you know what that means but if not, here’s a link to a May Clinic explanation. Back to Sherry … she shared with me via email this morning:

“Having a more aggressive form of the cancer has made me even more determined to not allow cancer to hold a higher place in my life than it needs to. I have breast cancer yes, but I have and am so many other things. I am a mother, wife, friend, and artist. I am creative, I read like there is no tomorrow and I am opening my mind to new subjects and new ideas through the wonder of the written word. I am taking my first steps towards writing and communicating and want to share my experiences to promote breast cancer awareness as well as spirit and inspiration.”

Good for you Sherry!

When I wrote Sherry to tell her that she’d won she told me that she intends to wear her hat to the CIBC Walk/Run for the Cure. So I couldn’t be happier to share this prize with her today.

Elizabeth Prostic (Lizzie) was diagnosed with stage IV breast cancer in October 2004. She was just 31 years old and a first time mom to a three-month-old baby at the time. She was one of Allison Winn Scotch’s closest friends.

Six months after her diagnosis, Lizzie passed away. Allison still grieves, still mourns … and yes, Lizzie was her inspiration as she started writing The Department of Lost & Found. But all those who’ve battled breast cancer inspire her, not just her friend.

Here’s something Allison said about survivors in a recent interview: “I’ve always walked away with the impression that these women are incredible and that their courage is unmatchable.”

Interestingly, Allison’s fictional character, Natalie, barely resembles Allison’s friend, Lizzie. However, Allison still viewed the book as an opportunity to rewrite her friend’s story: “Not her story in particular, but that of a woman who had so much left to live for. Only this time I could control the ending, rather than watch helplessly from the sidelines.”

Ah, to control the ending. Unfortunately, unless we’re talking about writing a story of our own, we just can’t do that now, can we? We don’t know the cards we’ll be dealt. We just have to make the best of the hand we get.

Allison herself said, “I really believe that life is what you do with it, something Natalie learns along her bumpy road as well. Losing Lizzie only heightened those feelings. The simple, and perhaps cliched, truth is that you only get one shot, and who knows when, how or why that might be stripped away from you.”

As I said yesterday when I reviewed The Department of Lost & Found, Lizzie would be proud of her friend, Allison.

She’d also be proud of her husband, Michael Lundblad, and her parents. Together, they established a foundation in her honor called The MetaCancer Foundation (www.metacancer.org) to provide inspiration and psychosocial support for patients and caregivers living with metastatic cancers.

It’s a great site. If you get a chance, check it out. Meanwhile, in case you don’t, tomorrow I’ll post about the red shoes.

Red shoes, you ask? Red shoes?

Ha, ha … you’ll have to wait and see!

A few days after my surgery (I believe it was day five) I was ready for my children to come and visit. No, that’s not true. I wasn’t ready for that at all. My children were ready to visit me.

My youngest, two at the time, was not part of the equation. There was no way I wanted her to see me briefly then have to leave me. Her separation anxiety was peaking and that felt like a cruel thing to do — it would be a tease. She was missing me, for sure, but as long as my parents kept her busy, she was distracted. I was missing her but had to think of what was best for her and not for me. That’s what mommies do, isn’t it?

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These last few days, the weather has been fantastic in the Northeast. Fantastic. Beautifully sunny, barely a cloud in the sky, a topaz blue sky.

This morning the temperature was a lovely 68 degrees. Before I’d taken my first sip of coffee, I was standing in the living room, having just opened the sides of the bay window to let in the fresh air, and a wonderful breeze wrapped itself around me.

I shivered and crossed my arms because I felt the chill take hold of my chest. My breasts, slowly regaining feeling as new nerve endings extend where old ones were removed, prickled in the cool morning air. With a lift of my shoulders I acknowledged that my nipples were getting hard then I realized … I don’t have nipples.

It must have been a phantom sensation but it was as real to me as a kiss on my cheek.

I smiled at the reality and walked away from the window thinking … who needs nipples when memories of having them are strong enough to fuel my imagination?

Remember the relief and the joy you felt as a kid on that last day of school? I do. The streamers out the bus window. The songs banishing teachers dirty looks. Mom waiting for you at home, smile on her face, arms outstretched, joy in her own heart, too.

That’s the mom I am today. While some moms are stressed because summer camp can’t start soon enough and others are saddened by the quick passing of time in their children’s lives, I am one happy momma.

Because I’m here for another summer. I’m able to take my kids to the beach, the zoo and the aquarium. I’m able to move my body well this summer (couldn’t say that last June). I’m so blessed.

So many people think survivors no longer ’sweat the small stuff’ — but that’s not necessarily true. Believe me, I still freak out over little things and have to remind myself they are indeed little things. That’s simply human nature.

What survivors do that is different is soak up the small stuff — the good small stuff that others brush off so quickly. I stayed in the freezing cold waters of Long Island Sound yesterday for an insanely long time so I didn’t have to stop swirling my five year old around. His little hands in mine warmed my heart and that just felt so good. I spoon fed my three year old daughter her dinner last night even though she’s been capable of feeding herself for at least a year just because I love the way she uttered ‘ummmmmmm’ after every bite and I couldn’t hear that enough. Then I sat on my bed this morning and watched my seven year old play his hand held video game on my bed because the rising sun made the highlights in his light brown hair sparkle.

Just feeling my kids. Seeing them. Hearing them. That’s such a gift.

Forget about not sweating the small stuff.

Soak up the small stuff.

It’s hard to describe the pain I felt when I became coherent after my surgery (my double mastectomy/reconstruction surgery, for those who are just joining the conversation).

Even the slightest movement pained me. The slightest movement, like breathing.

I was eventually wheeled up to a private room on a floor reserved for women — I didn’t realize the gift that was in the long run. At the time, I was so confused. Why I didn’t have people looking after me and caring for my every need and whim. Honestly, I felt discarded. I was so immobile, so vulnerable, so afraid.

I was afraid the pain would never subside, afraid my blood would clot, afraid an infection would start, afraid I’d never heal, never move again. Afraid …

Well, afraid I’d die from the pain.

Then I realized they weren’t giving me any pain medication yet.

NOTHING.

If I was to advocate for a change in anything related to surgery it would be that transition time between surgery and recovery that are so frightening for the patient. Frightening because nobody is truly in charge anymore. In the OR there are loads of people who know what they are doing. Once you are settled in your room afterwards there is a nursing staff who knows what they are doing. But the transition between the two places needs serious improvement. At least the day of my surgery it did.

I guess there were still pain meds in my system from the OR and that needed to run its course. Whatever, the whole experience had me upset, my husband nearly frantic (his feelings of helpless and lack of control are tabled for a post for another day).

So they get the morphine drip hooked up and things became more manageable. Not the pain, mind you, but the anxiety.

Until my husband finally goes home around midnight (we did have kids desperate to see him in the morning to find out how mommy was remember, their needs came before mine). But that’s when the morphine pump goes empty and the horrible beeping started.

And I couldn’t move.

And it took twenty minutes for a nurse to finally respond to my call.

I suppose that would be another area that needs improvement … that middle of the night nonsense. They come in, they take your vitals, draw blood, all this stuff that wakes you up yet when you need them, they’re nowhere to be found.

I was such a wreck, crying, complaining. I just wanted someone to make the whole thing better for me. But all they did was tell me I’d feel better the following day. So I was anxious for that, anxious to start to feel a difference.

But that difference never came. By morning I was running a temperature of over 102. Something was wrong.

Breast Cancer, Surgery, Mastectomy

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