my Breast Cancer blog

2004, age 34 — this is my story

Lucky

dsc_0534.JPGI'm one of the lucky ones—I'm surviving cancer, have been since November 2004. That makes me three and a half years invincible, and I must say it feels good to go to bed each night knowing I've survived for 1,277 days.

My neighbor is not so lucky. She was diagnosed with breast cancer—my same disease—a little more than six months ago. She had it removed—both the cancer and her breast—and already, the disease is back. It’s back in her breast tissue. It's made its way into both lungs too. Doctors are calling it stage IV. Hospice is calling on her already.

"She's no young girl," her husband told me last night when we passed each other in the neighborhood. But she is. She's 73. In my book, that's young. I don't want to die at 73. She shouldn’t need to either. But it's happening. And there’s nothing anyone can do to stop it.

1,277 days. I'm one of the lucky ones.

Normal life

My oncologist told me today at my six-month follow-up that he couldn’t be happier with my progress. Ditto, I say. He told me it’s almost like I’m back to normal life. Ditto, again.

Gosh, I really don’t have much more to report on my personal cancer front, which is such very good news.

Clearly great

jerrythesaint.jpgMammogram: Clear
Ultrasound: Clear
My mood: Great

It could have gone the other way. One of my imaging tests today could have turned up something suspicious which would have dictated a completely different outcome and a much worse mood. It happened three and a half years ago when the doctor who'd seen my tumor on ultrasound said, "I want this out and in a jar." That tumor that landed in a jar days later was cancer. And so every time I'm screened and every time I see my oncologist for a follow-up (coming this Monday), I'm never really sure how clear or how great things will be. I'm sure for now, though. My boobs show no sign of cancer. My mood shows no sign of worry. I couldn’t ask for anything more.

Sigh.

photo courtesy of JerrytheSaint on flickr

Kicked to the curb

dsc_0127.JPG

Just three and a half short years ago, I was wondering if I'd live long enough to baby my babies. They were almost four years and 18 months old when I was diagnosed with breast cancer and more than anything in those early cancer days, I feared for my life—which made me fear for theirs. Who would hug and kiss them, snuggle and cuddle them? Who would make their favorite snacks, pick out the best-fitting shoes, cut their little finger and toe nails, and dry their little boy tears when skinned knees and scary dreams made them cry? Surely, I was the only one who could stay home with them all day, the only one who could help them become social beings, the only one who could help them manage the days leading up to their solo journeys into the world. OK, I admit: their dad would do a pretty good job in these areas if left on his own. But I was—still am—selfish. I want to be front and center in their lives. Thankfully, three and half years later, I am.

Breast cancer hasn't taken me away from my boys—but something else threatens our togetherness. That something: Joey. It's not his fault he's separating from me. It's his age—he's seven.

Today, while driving into his elementary school parking lot, Joey said, "Mom, can you just drop me off at the curb tomorrow?" Gasp! I always walk him into his classroom, talk with his teacher, wish him a great day, and kiss him goodbye. A few months ago, I wondered if the kiss was a bit much for a first-grade boy. I asked Joey if it made him uncomfortable, and he told me it did not. Now, however, he has apparently decided the kiss is too much and so is my presence in his personal school space.

“Yes,” I told Joey. “I can drop you at the curb tomorrow.”

I knew this day was coming. And here it is. My baby is no longer a baby. He's growing up, becoming independent, plotting his departure from my grasp. It makes me sad. And it makes me happy, happy because I am alive and present and I get to watch my first-born guy wiggle his way out of my care. How sweet it is.

Forecast: sunny

img_1249.JPGimg_1247.JPGIt's been 16 days since my tummy was tucked.

And I'm back.

Back to standing upright, back to driving my kids to and from school, back to walking for exercise, back to my bed—so long, recliner.

Still no running, still no functioning without a compression garment wrapped around my middle, still a bit of swelling—which means still no blue jeans—but mostly, I'm back. It feels good.

John feels pretty good too, despite a small skin cancer surgery he had yesterday to remove a squamous cell carcinoma from his left hand. The procedure—called Mohs—went well. The doctor got the cancer by taking just one chunk of skin. Armed with a few stitches, John is on his way to a speedy recovery.

In honor of Skin Cancer Awareness Month—it's this month, May—take a peek at this site, home of The Skin Cancer Foundation. While there, find out how to best prevent, detect, and treat this all-too-common disease. By too common, I mean this: About one million people in the U.S. are diagnosed with basal cell carcinoma each year. About 250,000 get the squamous cell variety. And nearly 60,000 are stricken with melanoma, the deadliest form of skin cancer.

Before you're done investigating this disease, pay a visit to my friend Miss Melanoma. She'll surely convince you that skin cancer is nothing to mess with. Her nine toes are a constant reminder.

Blue jean blues

If you find yourself in the market for a tummy tuck—translation: You’ve gained lots of weight, had great success at losing it, but find shockingly a good chunk of skin dripping from your mid-section—and you actually go through with this major abdominal procedure, like I just did, I have one solid piece of advice for you: Do not try on your jeans eight days after surgery, like I just did.

Why?

Because not only will you find that you are not several sizes smaller—a possible eventual result of the tummy tuck—you’ll discover that your pre-surgical jeans will have somehow shrunk in size during the short amount of time it took for you to go under the knife and then come out of your pain-medicated fog.

Yep. The jeans will be too tight. And if you’re like me, you’ll convince yourself that your hips and butt have grown in epic proportions in the mere week you’ve spent recovering from that belly-perfecting operation.

OK, so my body parts are likely the same size as they’ve been for some time now. I’m just swollen. Not above my incision that runs underneath my new belly button, from hip to hip—this looks amazingly flat and tight and well, perfect. But below the taped-up cut my doctor carved into my stomach is a bulging, newly-pregnant looking clump of skin that is pushing out so far my jeans can’t rise above. It’s solid. It’s jam-packed. It’s driving me crazy.

I’m an impatient patient. I don’t like that I must wait weeks—months even—to see my final result. I’m so impatient I told my doctor on post-op day number six that it seemed the problem he removed had moved down lower. “No,” he told me. In time, it will be flat. Flatter than it’s ever been, he said. And then he issued me this strict warning: Do not shop for new clothes for three months. Two days after he handed me this advice, I’m tugging at my favorite Lucky jeans, trying to inch them up over my swollen mound. Am I crazy? Perhaps. But I can also learn from my mistakes.

My jeans are back in the closet, and my stretchy athletic shorts are back in place—where they’ll stay until my body heals and rebounds from its trauma and I attempt once again to hoist those denim blues up over all my body parts.

In three months.

Sitting

joey2.jpg"Sometimes having surgery is a good thing," seven-year-old Joey told me yesterday.

"Oh Yeah," I said. "Why?"

"Because you get to sit around and do nothing," he answered.

Wait. It gets better.

Joey went on to tell me: "You are always driving us around and doing things for us and now you get to sit and rest."

I love that guy.

Sitting is exactly what I've been doing ever since my tummy was tucked on Wednesday. I've been sitting in my living room recliner, sitting at the kitchen table, sitting in my mom's car traveling to and from post-op appointments, sitting in my back yard watching Joey and Danny splish and splash on their new Slip-n-Slide. I can't yet recline in a flat position, and I can't stand for extended periods of time. Sitting. That's what I've been doing. That, and taking pain medication. And emptying drains. And sleeping. And writing. And doing quite well, I think.

I'm not in horrible pain. I'm tight, and hunched over, and I feel a bit of pressure and pulling. But I'm not miserable. I predict, in fact, that before too long, I'll be back to my routine—the one that involves driving my boys around and doing things for them. For that, I can't wait.

Tummy transformed

tummyafter.jpgMy tummy is tucked. It’s flat, tight, and oh how I love my new belly button. Amazing. Simply amazing how that loose and saggy skin that troubled me for so long is now gone. Completely gone.

My surgery yesterday went well. My excess belly skin was removed, my baby-stretched muscle was repaired, and my umbilical hernia was fixed. One day later, I’m walking in hunched-over style, spending a lot of time in my living room recliner, and staying on top of my pain medication so misery doesn’t set in. I have two drains dangling from my belly, one pain pump strapped to my side, and a compression garment holding me tight. I feel some pressure and some minor throbbing, but nothing serious is plaguing me at the moment. Could it get worse? Probably not, says my doctor who will remove my pain pump and one drain on Saturday. The second drain will come out on Tuesday. Then I’ll be on my own—well, maybe I’ll keep my pain meds on board just in case—to recover and heal.

tummybefore1.jpgJust after I had my second baby, I asked my OB/GYN about a tummy tuck. He wasn’t a fan of the procedure and suggested I give it five years. Five years to allow my body to bounce back from two whopper pregnancies and to achieve a healthy weight and fitness routine. The five-year mark would also put both of my boys in school so I’d have time to rebound from this serious surgery without tending to their every need all day long. Good advice.

Today, both of my boys are in school. Danny turns five in May.

Ax the alcohol

The connection between alcohol and breast cancer existed at the time of my diagnosis. Nothing conclusive, just a possibility, yet enough for me to forgo that occasional cold beer in a frosty mug at dinner and that sometimes social drink. I don’t want cancer. Once was enough.

I think I’ve made the right drinking decision. Just this past Monday, findings from a large U.S. study—the biggest of three major studies on the topic—revealed this: Alcohol consumption leads to an increased risk of the most common type of breast cancer in postmenopausal women.

OK, I’m not postmenopausal, and I didn’t have the most common type of breast cancer—the kind fueled by hormones—but I will go through menopause one day. And I could develop a hormone-sensitive tumor. These facts are enough to secure my choice to remain a non-drinker for all of time.

This new research found that women who consumed one or two small drinks per day were 32 percent more likely to develop a hormone-sensitive tumor. Three or more drinks per day: 51 percent.

Toss the trans-fats. Ax the alcohol. Neither is worth the risk.

Toss the trans-fats

What causes breast cancer? Oh, I don’t know. Genetic mutations. Family history. Environmental factors. Poor diet. Lack of exercise. Alcohol consumption. Obesity. All are possibilities. Here’s one more: Trans-fats.

The link may not be strong at this point but preliminary research—published in the American Journal of Epidemiology—shows that women with high blood levels of trans-fats may have nearly twice the risk of developing breast cancer than women with the lowest levels. It’s enough to steer me way clear of these fats, found mostly in baked goods, snacks, and a variety of other processed foods.

I don’t want to steer clear of omega-3 fatty acids—the good stuff found in fish such as salmon, walnuts, and leafy green veggies—but interestingly, it seems women with high levels of these fats were not any less likely to have breast cancer.

More about the omega-3s another time. For now, let’s collectively ditch the trans-fats. We already know they’re artery cloggers. The fact that they may also up breast cancer risk is a deal sealer. For me, anyway.

Better

I constantly work at being a better person. I work at criticizing less, gossiping less, whining less, and yelling at my kids less. I try to understand people instead of judging them. I try to keep my crabby moods from troubling others. And I try to admit when I’m wrong, even when it would feel so much better to be right.

Cancer helps me work on my shortcomings. Because I’ve conquered the disease—for now—I figure I have a second chance at becoming a really good person. So when I learn about a self-improvement technique that seems suited for me, I grab it and try to infuse it into my world. Here’s one I know will work wonders the next time I find myself in a disagreement with a loved one. It comes from Dan Shapiro, a 20-year Hodgkin’s lymphoma survivor, husband of a breast cancer survivor, and psychologist who treats folks with cancer. This guy knows cancer. And he knows how to solve problems for people living with the disease.

Shapiro, who shares his three-step approach to good communication in the premiere issue of heal magazine, has this to say.

First, recognize that cancer shapes most of your interactions with most everyone.

Second, listen carefully and start your response to any attack by acknowledging the true parts of what your opponent has said—even if the true part is teeny tiny. Instinct will have you doing what you normally do—defending yourself, maintaining your rightness—but saying “you’re right” in the middle of a fight is a great way to defuse the emotion of the interaction.

Third, do little things that make your spouse, friend, family member feel loved. Shapiro’s wife likes a clean bathroom. If he cleans it for her, he knows she’ll feel loved.

I’m going to practice these three steps. For better or for worse. I’m banking on better.

Blogging breast cancer

I just received a copy of MAMM magazine in the mail—the March/April 2008 issue—and I wish I could lead you to the online version of this publication but the issue is not yet available on MAMM.com. Bummer. Because if it were there, you could read this article titled “Blogging Breast Cancer.”

The article starts: Thousands of women are sharing their cancer stories and baring their souls to the world—without ever leaving their computers. Why are online diaries so popular?

It goes on to spotlight a handful of breast cancer survivors who author their own blogs. I am one of them. A snippet of one of my posts is published. Mention is made of my writing career and how it grew from my cancer misfortune. My photo appears too.

Usually, I do the writing when it comes to breast cancer. Now someone has written about me. If you can track down a copy of MAMM, check me out. And check out these other featured blogs.

www.fighting-breast-cancer.com
www.jaynesbreastcancerblog.com
www.2hands.blogspot.com
www.the-cancer-grrrl.blogspot.com
www.krankipantzen.blogspot.com
www.blog.healthtalk.com/breast-cancer/life-with-breast-cancer

Finishing Touch

I never thought I’d elect to have surgery after going under the knife for the removal of a cancerous tumor that somehow lodged itself in the tissue of my left breast. Surgery is bad enough when it’s medically necessary. It seems silly then to choose to submit to general anesthesia and all that follows, like the slicing and sewing of skin and muscle, the pain, the recovery, and the potential for complications. Yet I’m considering it. I’m more than considering it, actually. I have a surgery date—April 23—and one week from today, I am scheduled for a pre-op appointment that will seal the deal. I have 7 days then to determine whether I’ll keep or cancel this appointment. I’m leaning toward keeping it.

Seven years ago, I had a baby boy. He weighed 10 pounds, 9 ounces. Almost five years ago, I had another baby boy. He weighed 10 pounds, 2 ounces. I gained 50 pounds and then 42 pounds with these monster guys, and all these years later, I’m left with loose, sagging stomach skin and a separated muscle underneath. I’ve tried all I can to get rid of these battle scars. During the past year, I really kicked my efforts into high gear. Motivated by the urge to prevent a cancer recurrence, I overhauled my diet—no soda, no sweets, no red meat, plus low fats, calories, and sugars—and began exercising more vigorously than ever. My results have been grand. My heart is strong, my energy is high, and my weight is down 15 pounds. Still, my tummy skin remains. It’s worse really. The less fat I have, the more the skin hangs. I want it to go away.

No amount of diet or exercise will fix my problem. But a tummy tuck will. So that’s what I’m pursuing. Some think I’m crazy, selfish even—a few years ago, while in the throes of cancer treatment, I would have, too—and some think I deserve it. Here’s what I think: I want to feel comfortable in my skin and in my clothes. Right now, I don’t.

If all goes according to plan, a surgeon—a guy who happens to specialize in breast cancer reconstruction using tummy-tuck skin—will remove a football-shaped chuck of skin from my abdomen. He will repair and reshape my muscle, reposition my belly button, fix an umbilical hernia—yep, I’ve got one of those, too—and then sew me back up. This outpatient surgery will cost me a few hours in recovery, 10-12 days of difficulty at home, 6 weeks of healing, and a few thousand dollars—no insurance help for this cosmetic procedure. The more I think about it—the good, the bad, the unknown—the more I want this tummy tuck. Even after breast cancer. Maybe because of breast cancer. I want to feel the best I can possibly feel—on the inside and out. I’ve done all I can do on my own. I consider this my finishing touch.

The power of storytelling

I was invited to join Trusera—a free online health community based on the power of storytelling—because the folks there want me to share my story. I accepted this invitation because Trusera prides itself on offering a safe and comfortable environment where people can locate credible, relevant health information. I like that. What I wanted most when I was diagnosed with breast cancer was someone—just one person—who’d already taken the steps I was about to take. I scoured the Internet in search of blogs, journals, and other resources that might help me. Eventually, I found them.

Trusera is a one-stop shop, a “been there, done that” kind of site the mad hunt for quality information unnecessary. Stop by and you’ll see. While there, you’ll find me—my picture, my profile, and journal entries I’ll be publishing several times per week. You’ll find other breast cancer survivors there too—and so many others with powerful health journeys.

Anyone can sign up with Trusera. And for those of you with your own breast cancer story to tell: Join before March 30 and Trusera will donate $10 to Gilda’s Club for the first 500 people. Click here to sign up—and be sure to note “Gilda’s Club” on the registration form.

See that Trusera link on the right hand side of my blog? Click on it and you’ll locate everything you need to know about this great place, where stories come to life and empower, inspire, and inform those who need them most.

Clarification

My doctor says those disturbing words used in my echocardiogram report to describe the valves of my heart—dilated, thickened, insufficient—are “normal variants.” They are medically insignificant. Just as I’d imagined they must be. I’m thankful for the clarification, though. And my doctor is glad I poked around for more information.

“I would have been disappointed if you didn’t ask about them,” he said.

I would have been too.

Context matters

Quick. Get me a cardiologist. My right ventricle is mildly dilated. My aortic valve is mildly thickened. And my tricuspid valve is mildly insufficient.

I’m sure this is all somehow medically insignificant. Otherwise my oncologist would not be telling me I’m good to go should I opt for a tummy tuck surgery (more about this tummy business later). If my heart couldn’t take it, surely he’d be warning me. The guy did save me from breast cancer, after all. He clearly knows what he’s talking about.

This morning, my good doctor e-mailed me a copy of my latest echocardiogram—that’s how I was able to pour over the details of this July 2006 report. I’d asked him for it as I continue to search my soul for guidance regarding my tummy, and he swiftly sent it my way. I wanted to know how my strong my ticker is—both my year-long therapy with the breast cancer drug Herceptin and my four doses of the chemotherapy drug Adriamycin put me at risk for compromised heart function and so my heart was monitored for a bit. I wanted to know today, based on my last screening, how I’d fare under general anesthesia and how my heart would tolerate a two-hour surgery—should I go through with it.

I’m good to go, says my doc. Still, I’ve asked him for a bit of clarification. What does this troublesome wording—dilated, thickened, insufficient—mean, I want to know.

This is what I want you to know: Context matters.

More and more, we patients rely on information via the Internet or in this case of mine, e-mail. These methods of research are void of human contact and medical opinion and therefore lack context. Who knows, maybe a thickened aortic valve is a good thing. Maybe it’s not necessarily good but not bad either. I don’t know. Until someone clears things up for me, I will remain uncertain. That’s why I’m following up with my doctor. You should too.

Whenever you are concerned about your health, do your research, ask around, dig up all you can. Then talk to a medical professional who can iron out all the kinks in what you’ve gathered. Balance is always a good bet. Really, it is.

My story

I don’t often tell my entire breast cancer story all at once. I usually share just bits and pieces of it. This afternoon, I talked about a few chapters with a fellow mommy while waiting in a doctor’s office. It turns out while I was being diagnosed with cancer three years ago, this woman found herself in a serious car accident. We talked about physical therapy, our long lists of doctors, our respective survivals. Our chat was short and sweet—and powerful.

This morning, I told my whole story. I talked about diagnosis, surgery, chemotherapy, hair loss, radiation, drug therapy, counseling, anti-depressants, hospitalizations, and doctor relationships. I talked about my hopes, my fears, my attitude, and my state of mind every step of the way. It took more then one hour of phone time to pour out every last detail for the researcher who will somehow use my information to help better the business of cancer. Our chat was long and involved—and powerful.

Talking about cancer is emotional. It forces me to revisit my travels with a life-threatening disease. It also helps me appreciate how far I’ve come, how well I’m surviving, how important it is to talk.

I told my researcher guy today that I’m willing to talk about anything related to cancer. Sure, I could be private about it all. I could keep my information inside. But I figure that doesn’t do anyone any good. Talking—and writing—about cancer is what helps. It helps me. I hope it helps others.

If you want to know something about cancer, especially breast cancer, ask me. My information is yours for the taking.

Operation tummy

I wrote and published this post for That’s Fit on December 15, 2007.

So I’ve got this loose skin on my tummy. I thank my little boys for this curse I can’t seem to whittle away. My two whopper guys barreled into the world weighing 10 pounds, nine ounces and 10 pounds, two ounces and no matter how hard I work out or how well I eat, this baby fat just hangs on tight. It’s gotten better over the years—all four and a half of them—but still, sometimes I wish just a little bit for a tummy tuck to erase my bothersome birthing battle scar.

Would I really follow through with a tummy tuck if money were no object? I’m not sure. That’s why I asked my doctor today for his opinion on this surgery. “I think it’s a bad idea,” he told me. Sure, it’s an option, he said. And it would probably clean up my problem pretty neatly. But it’s surgery. And while tummy tucks have gotten less and less invasive—they can be performed in a doctor’s office without general anesthesia—the procedure requires an incision from hip to hip to ensure a tidy final product. And any surgery can cause problems. Infection, mistakes, difficult recoveries, and scarring are just a few worst-case scenarios. These are the very things that cause me to stray from such a seductive surgery.

A flat tummy would undoubtedly lift my spirits. But a surgery-gone-wrong could permanently crush them. So I think I’ll rely on good old-fashioned hard work as I try to fix my flab. What would you do?

It’s been three months since I determined I would not submit to such a surgery, three months of obsession and depression and plain old hatred for this stomach of mine. And now I’ve changed my mind. I can do that, right?

I’ve decided that I need this surgery. Not medically. Just emotionally. Because no amount of eating right and exercising right is going to change what hangs from my mid-section. I’ve got a team backing me on this—family, friends, doctors, and fitness trainers. They all assure me that I’m not cheating by opting for this procedure, that I’ve done all I can, that it’s OK to remove what drives me absolutely bonkers. I’m not taking an easy way out then. I’m taking the only way out. And while money is an object, I realize I’m worth the investment.

It all begins on April 23 when I allow a plastic surgeon—an expert in breast cancer reconstruction using tummy tuck skin and thus very well-equipped to handle my issue—to cut a football shaped chunk of skin from my middle. While there, he’ll repair and reshape the muscle my big babies separated, fix an umbilical hernia, and sew me back together. I’ll end up with a repositioned belly button, a few missing moles, a flat gut, a six-pack even.

A tummy tuck is no simple surgery. It is in fact still very invasive, I will receive general anesthesia, and a full recovery, which will allow me to exercise and lift heavy objects, takes up to six weeks. And yes, there are risks. But I think—I hope—the benefits of this fix will outweigh the small chance that something will go wrong. There is just so much that can go right with this surgery that I really don’t want to deny myself the peace of mind and comfort I know will come from it.

I admit there is some reservation swirling around in my head, made worse by a new acquaintance whose own tummy tuck 11 days ago has left her feeling great remorse about what she’s done to her body, what she’s done with her money, what trouble she’s caused her husband and daughter. With time, I think she’ll probably regard her decision as one of the best she’s ever made—most women do—but right now, she’s struggling. This causes me to pause.

Big decisions are never easy. I have three weeks to secure mine, three weeks until I attend my pre-op visit and hand over my cash. I have three weeks then to make a final call. What will I do? I’ll let you know.

Not a bad deal

My gut was right.

I am fine, says my radiation oncologist and the resident who examined me during my six-month follow-up today. My appointment did turn up something, though: A referral for massage therapy. Not a bad deal.

On Wednesday, I will report for the first of a few massages designed to rehab my left shoulder and arm, the areas where muscles are twisted and tightened due to surgery and radiation. I’d planned to just live with my limited range of motion, the soreness I feel after physical exertion, the way my shoulder rounds forward. This can all be fixed, though, my doctor told me. Thank goodness for that.

Thank goodness for today’s clean bill of health too. I celebrated with a trip to Panera for a cup of low-fat chicken noodle soup with sourdough bread. A pumpkin muffin was my treat. A yummy day overall.