Why Pursue BRCA Testing

Have a close relative who has battled breast or ovarian cancer? If so, you may want to check into being tested for the BRCA gene. It's a no-brainer. See August 1, 2008 posting.

Great News for BRCA Gene Testing!

New legislation helps with BRCA gene testing. See Nov. 3 posting.

Life as it should be lived

When you've stared death in the face twice before the age of 50, you get a few things in order. 

One of the chief realizations through my battle with cancer is the brevity of life (no big shock there, I know) and the importance of living out your dreams, if possible, rather than putting them off for "one day" that never comes.

Despite depleting my life savings account, I'm embarking on my dream of taking my two nieces (ages 15 and 22) to Paris.  Since they were little girls, I've talked about taking them to Paris, even using this as a ploy to get one of them to expand her culinary tastes beyond, "eew, yuck, gross." 

So, with map and credit card and a French-American dictionary in hand--and a suitcase packed with nothing but black--we leave today for a week in Gay Paree, exploring the touristy sites, visiting the local markets and eating nonstop. 

It's a dream-come-true for me.  I hope to give my nieces a memory for a lifetime.  I'm so mindful in light of cancer that what's important to me are people and experiences - and I want to fill my time with those two things.

Au revoir.

Two Year Mark

I know why they call it the Terrible Two's.  I recently marked 2 years post-surgery and find myself constantly throwing tantrums like a toddler. 

Even after all this time, I'm still building back my life physically, emotionally and mentally.

Physically...I'm trying to build abdominal muscles and stretch tissues that are too tight because they were cut. 

So, MY ADVICE before you go under the chopping block: get details in writing from your surgeon and then go see a physical therapist, your new best friend.  Because this surgery affects your entire core, from top to bottom: muscles, tissue, ligaments. 

My recommendation after surgery: Get a doctor's referral to a physical therapist, who specializes in pilades. 

In addition, you'll need to do the following:

* Pilades (for core)

* Yoga for flexibility.

* Weight training to build muscle strength.

* Water aerobics and swimming for all the above.

* Lots of martinis for everyone who has to put up with your mood swings.

See you at the gym.

A Lesson on Healing

Today, I ventured out for my first official errand since surgery...a trip to the farmer's market.  The market is a real treat since it carries all sorts of organic produce, wild Alaskan salmon, exotic spices and freshly baked breads, among other things.

Following doctor's orders to "ease back into things" and the "no lifting over 10 pounds" rule, my goal was to make a quick trip, buy only a few items and return home safe and sound.

Walking into the market was like entering a Christmas wonderland.  Colors and textures and aromas.  Oh, my!  Flaming red beets and orange turban squash and purple potatoes and rich green brussel sprouts.

Yes, I stayed too long, bought too much and wore myself out.  And, I discovered an interesting fact:  healthy food weighs a lot.

The Way of Love

In his book, The Five Love Languages, Gary Chapman spells out the different ways we express and want to receive love: Words of Affirmation (You're wonderful!), Quality Time (Up for a drive in the country?), Physical Touch (Well, yeah...), Receiving Gifts (Americans specialize in this)...and Acts of Service.

Although we can appreciate each of these expressions, there tends to be one that speaks to us most, in which we deeply feel loved. Unfortunately for my husband, I feel most loved by Acts of Service.  If only I could be bought off with a ring.  But, no, I prefer him hauling barrels of compost to my garden beds each spring, which he loathes.

I bring this up because during the cancer treatment process--or, I should say ordeal--people have been amazing in showering me with love.  I've received cards and books and warm pajamas.  I've been sent dozens of cards with touching sentiments.  People have told me how special I am and how I've impacted their lives.  All of these things have greatly moved me.

In addition to these gifts, the Acts of Service have carried me through the most difficult times, and I can't emphasize enough how vital it is to have people lend a hand -- and be able to accept their generosity graciously. 

I've pretty much been on the giving end of the equation, in which I was control, I was the strong one, I was capable.  I suspect this is true for most breast cancer patients.

Being on the other side, in which I was the vulnerable one, the weak one, the dependent one...well, that was hard to accept.  And a lot of that has to do with pride. It's hard to admit to yourself that you're not the all powerful, invincible super-woman you thought. You're mortal like the rest.

Once again, during this last surgery, I had friends who took the time, trouble and effort to sit at the hospital during surgery, drive me places, bring me homemade soup, walk my dog, run my errands...lend a hand anyway they could. Of course, my husband and my parents were there for me along the way.  But having friends to give them some relief was an enormous gift. They are the super-women.

Throughout my experience with cancer, I've learned many things, but one of the most crucial lessons is this: you simply can't get through cancer without the love of others.

Reconstruction, Rebuilding, Rebooting

It's over!  I went through my final surgery and have been resting and healing this past week. 


Looking back over this process, I ask myself--based on what I know now -- was reconstruction worth it?  For the most part, I would say yes.

I love the results of what my surgeon did.  I think about how terrified I was upon hearing the words, "double mastectomy."  All I could envision was being butchered.  I never would have dreamed I could go through this and end up with a body that, frankly, I liked better than when I began.

However, I would tell anyone who is considering reconstruction that you have to be physically and emotionally up to it, because it's a long haul, requiring a lot of work and patience. 

I've been frustrated in having to accept my limitations.  I've been exhausted, not having the same stamina as I did before. I've had to dedicate long hours to rebuilding muscle that was cut.  My abdominal muscles swell when I put too much pressure on that area, which can make clothes extremely uncomfortable.  And when I'm stretching or doing some sort of exercise, my muscles can cramp, which is painful. You have to think of it like rebuilding Dresden...one stone at a time.   


It's far more involved than you realize going into it.  But worth it?  Yes, you could say that.  But, I understand now why some women don't choose the reconstruction route.  It's hard.  There's no right answer, but what feels right to you.

So, now that surgery is behind me, I will be taking it easy over the next six weeks -- no strenuous activity -- and then back to exercise...and then tattooing.  The fun never ends.

The Mammogram Debate

The latest news being hotly debated is about moving the recommended age of women to begin mammograms from 40 to 50.  

I know statistics show that for the most part, it's not as necessary until women reach their fifties (and there are those cynics who think radiologists are fighting this because it would affect their income).

While I'm no medical expert, but from a survivor's point of view--and one who was diagnosed at 41--it concerns me since cancer grows faster in younger women due to their higher levels of estrogen. So, the earlier cancer is diagnosed in younger women, the better to catch it before it spreads.

It also seems like there are more and more younger women (pre-menopause) who are being diagnosed with the disease.  Statistics don't back me up on this, I know -- rather, it's only from my personal experience.  But almost every woman I know who has -- or had --breast cancer, was diagnosed before 50.  Maybe I'm just hanging out with the wrong crowd.

Hopefully, this issue will be discussed and debated more before they raise the age for a mammogram to be covered by insurance. We don't  need one more thing to discourage women from screening for cancer.

Don't Worry, Be Happy

As a breast cancer survivor and BRCA-gene carrier, I appreciate Barbara Ehrenreich for acknowledging the “Think Positive!” attitude pervasive in the cancer world.

Although most people were exceptional when I went through chemotherapy, there were also well-meaning, but misguided, “positive energy” advisers. The “Be happy and you’ll be cured” superstition is all too common in cancer dialogue, which doesn’t allow space for patients to truly grieve or acknowledge their fear, pain and anger.

Thank goodness for support groups that allow people to be real in the mist of the unknown.

Speaking of Hair...

With all this focus on the cosmetic side of reconstruction, a girl can't go too long without bringing up the number 1 topic when it comes to our appearance...hair, of course.  

This past year, when gray strands started comingling with my brown ones, I decided it was time to stop the henna and take on serious coloring. However, permanent and semi-permanent hair dyes converted my hair's texture into straw, with strands floating above my head despite every product I tried to control it. 

Finally, a coworker put me in touch with a stylist who was a breast cancer survivor and used only non-toxic, organic products. I immediately made an appointment and discovered EcoColors hair color. 

Voila! The color is rich and natural and my hair's texture is soft and glossy. And, I feel better knowing I'm not infusing my scalp with toxic dyes.  Ask your stylist to try them.

Soliciting Surgery Opinions

I continue to seek opinions as to whether or not to have this minor surgery, and it's split half "do" and half "don't." 

Today, I received this advice from my friend, Anne, who is always wise and witty --

"Sounds like you’ve gotten lots of advice, so what if I add my 2 cents. Here’s my only question—does how it look or feel bother you? Honest answer (not to me, to yourself.). If it does at all, don’t try to talk yourself into thinking you’ll rise above it and get over it. You won’t. You’re too vain. (Remember, you drive all the way outside the perimeter to get facials.) And it’s only going to get more timely and costly for all our improvement/ maintenance items as we age…So, unless it HONESTLY doesn’t bother you, I’d go ahead and do it."

I was fine about not having surgery until she brought up my vanity.  Now, I may have to reconsider.  

Third Time's a Charm?

To cut, or not to cut. That is the question.

After last year's odyssey of reconstruction surgery, I am faced with the option of a final phase. Because I had radiation during cancer treatment years ago, one breast healed differently than the other.  That was to be expected, I was told. 

The difference in size and shape is not significant, nor is it painful.  It's just somewhat irritating and there is noticeable scar tissue.

Of course, my surgeon is all for another surgery to "tweak" everything and make me perfect.  Ah, to be perfect...such a temptation!

It may be "minor to him," since it's outpatient and the procedure takes only 30 minutes. But anytime I go under the knife and it involves general anesthesia -- not to mention needles, bloodwork, EKGs, drugs, the risk of infection and those nasty drains -- it's major to me. 

If they told me that I had cancer again, I'd go rushing to my surgeon's office in a flash.  But, it's cosmetic.  Non-life-threatening. Optional.

Do I really want to subject my body to more anesthesia and cutting and discomfort and healing time?  I've been committed all year long to exercise classes to build up muscle strength and flexibility that were lost during my surgery last year.

Surgery requires you to lay off intense exercise -- only walking -- for 6 weeks afterwards.  Don't know that I want to stop my workouts after I've made such progress. 

I've asked everyone's opion (short of the people I pass on the street).  Surgery or not?  My husband says no, that I look great and have been through enough surgery to last a lifetime.  Amen to that.  Mom votes yes, since I'm still relatively young and have health insurance.  I might change my mind down the road and then I'll be older (riskier) and may not have insurance coverage.  My friend, a former plastic surgery nurse, agrees with my husband that my body has been through enough.  Other friends have said to do it and get it over with so I won't have to worry about it any more.

This is what I lie awake at night and think about. But I don't have that many nights left since my surgery is scheduled in two weeks.  So, to keep my date with the surgeon or cancel. That is the question.  Then, there's the possibity of perfection...

The Thrill of It All

I see no need to ever ride a roller coaster again. Nor try bungy-jumping, skydiving or rappelling. No extreme sport can equal the death-defying thrill of being a cancer survivor.

UP...you have cancer...DOWN...treatment arrested it...UP...you have the BRCA gene...DOWN...surgery will prevent reccurence...UP...there's a questionable area on your MRI scan...DOWN...the followup MRI shows no cancer growth...UP...your blood test shows elevated markers...DOWN...your blood test is normal again.

It's the roller coaster hell of WHAT IF? that happens with every checkup, every blood test and every scan. 

Having to face the inevitable can be Good...you take nothing for granted and, hopefully, live each day to its fullest...and Bad...you worry that your life may be cut off sooner than later. 

After all the up's and down's of my ride with cancer, and I'd like to take a breather for a while.  Yesterday, I found out my markers were within normal range again.  Hurrah!  When I received the good news at the doctor's office, I broke down and cried. 

Waiting over a week for results of my latest blood test put me on edge.  Okay, over the edge.  On the surface, I thought I was doing fine, but my husband and parents noticed I was even more wired than normal.  Which says a lot, since I'm Type-A. 

I didn't tell them for the better part of a week, but finally relented when I kept snapping at everyone over the weekend.  Mom told me that harboring all this anxiety and not sharing my fears with others only makes it worse.  Talking about it with a few safe people can help get me through rough emotional times like these. 

Agreed.  But, the question is, do you drag your loved ones onto the roller coaster with you since it's a continual ride for the rest of your life?  This has been my dilema since being first diagnosed.  Why put my husband and parents through unnecessary worrying?

On the other hand, does "protecting them" by not allowing them to live through this experience really help them and me?

I don't know.  And until I resolve this issue, I can't promise that I'll handle it differently the next time.

The Quest for Less Stress

I hate when someone tells me not to be stressed or I'll get cancer.  That sends me over the edge, since they're saying that if cancer returns, then I'm to blame.  Just what a cancer survivor needs -- Guilt.  And saying that to a Type-A, high-strung personality is pretty much telling me to change who I am.  Or change my life.

To eliminate stress in my life, I would need to (1.) quit my job, (2.) end my friendships, (3.) ignore my husband and family, (4.) stop driving altogether, (5.) cancel my New York Times subscription, (6.) stay in bed all day. Essentially, quit living. 

Then, I get a call from my oncologist who tells me that I have elevated "markers" (indicating a possibility of cancer cell growth) from my visit a week ago...and you tell me NOT to be STRESSED?!

I ask you: What NORMAL human being wouldn't be stressed by all that?  We all live crazy lives and then ADD CANCER to the mix and, PRESTO!, you have my life.

So, off I went to the oncologist's office yesterday for more lab work (big needle in little veins drawing lots of blood).  

And now, the waiting game begins.  One week until I find out the results.  And you tell me to not be stressed.

Surgeons Lie

In case I haven't told you this before, surgeons lie.

It's true. They minimize the pain and emphasize the fabulous end result. And leave out a few details.

My first breast surgeon told me the scar would be so tiny that I could walk buck naked down the French Riviera and no one would suspect I had a lumpectomy. He was wrong, of course...not that being naked on the Riviera was ever a goal of mine.

The surgeon who performed my hysterectomy told me that "it was his best cut ever." Wrong again. I've sliced raw chuck roast at a better angle. He should have taken the knife skills cooking class with me.

My reconstruction surgeon said my "new" stomach would be flat as the wall. Maybe. I'll let you know after I complete 15 years of boot camp.

I guess surgeons think that if they appeal to your vanity, you'll gladly go under the knife. Frankly, saving my life was incentive enough for me. They could skip the false promises. But apparently they didn't trust I'd be that level-headed.

So, I'm here to tell you BRCA carriers: Get the surgery. Go under the knife. And know that you're taking the right step in helping prevent cancer's appearance or reccurence. But don't bank on being naked on the French Riviera.

Beauty & the Beast of Breast Cancer

In today’s celebrity-obsessed culture, women are pummeled with the message that to be loved and happy, they must possess beauty and physical perfection.

It’s hard enough for the average person not to succumb to this pressure, but how much more for women battling cancer.

Breast cancer treatment can assault a woman's femininity, sexuality and attractiveness.

I asked my friend, Virginia Apperson, how to deal with this. I figured she was the best person to turn to since she's a Jungian psychoanalyst and author of the book, “The Presence of the Feminine in Film."

“We’re a superficial culture that sets certain requirements as to what is beautiful—especially for women—and if we don’t fall into these standards, we don’t feel like we have value,” she said.

"But the irony is that it’s out of suffering and illness that we deepen ourselves and discover aspects of ourselves that are more genuine than striving for outer perfection."

The reality is, there’s nothing pretty or easy about cancer treatment. However, in the midst of it, there are choices as to how to endure, she pointed out.

Virginia said you pretty much have to put on blinders and 'start living in another ‘universe’ (how Jungian). In other words, find a place where not being perfect is acceptable.

"Surround yourself with others who can commiserate with your issues, and can acknowledge what you’re going through and grieve with you," she advised. That can be found with friends, support groups, or with a therapist or a pastor.

She also suggested expressing your feelings in "physical form"-- as she put it-- through writing or art.

“We’ve so sanitized our world and been told not to have bad feelings. But, the hope is, if you confront the despair and express it, it ceases to have power over you.”

Instead, she said, it could give you a deeper understanding of who you are and what's important to you.

Another tip - avoid magazines and TV programs that emphasize beauty and glamor. There's nothing worse than picking up a copy of Vogue with a cover of an emaciated teenager airbrushed to perfection.

Virginia encourages women to seek inspiration from role models in literature and film "who allow their inner self to be valued"--"characters who have the fierceness to say, ‘I’m not playing along!’ "

A good example is the movie, "Cold Mountain." Ruby -- who is plainly in need of a makeover--displays "a life force that’s unstoppable,” as Virginia describes it. Ruby is paired with Ada, who although is beautiful, finds that beauty won't keep her alive. Ada learns how to be strong through Ruby and Ruby learns how to dress better through Ada, which all leads to a somewhat happy ending.

So toss out your latest copy of People and watch an old Betty Davis movie instead. After all, Betty was not the beauty that many starlets of her time were, but she outshone and outlasted them all.

Breast Cancer Makes You Fat

It's bad enough one has to suffer through cancer, but to add insult to injury, it can make you fat.

Jill Binkley, a physical therapist and breast cancer survivor, explains why.

Jill founded TurningPoint Women's Healthcare (http://www.myturningpoint.org/), a comprehensive rehabilitation program for breast cancer patients. It provides physical and massage therapy, as well as nutrition and exercise counseling.

“About 60 percent of women with breast cancer gain weight, which most women don’t expect…in fact, they assume they’ll lose weight,” she says.

But, due to metabolic and chemical changes from chemotherapy--plus, menopause kicking in -- the scale tips toward the upward direction for most women. Add a sizable dose of steroids to help the medicine go down and you're looking at a new dress size (or two).

A solid nutritional plan and regular exercise program -- 40 minutes per day 4-5 days per week--can help stave off unwanted pounds.

This is not only good for your wardrobe, but for your health as well--since weight gain is a risk factor for developing lymphedema and cancer recurrence.

Dragon Boat

I obviously need to get out more. I had never heard of a dragon boat, much less dragon boat racing. But to my surprise, it's quite the rage, especially among breast cancer survivors.

Rowing, in general, is the perfect exercise for the area that's been marred and scarred by surgery since it builds and strengthens chest-arm-back muscles. In addition to fitness, the dragon boat brings survivors together for fun, camaraderie and an enhanced body image.

Besides rowing for fitness, dragon boat teams participate in races to raise money for breast cancer research. So grab an oar, smear on some sunscreen and hit the water. It could benefit your life and others. (www.myturningpoint.org/DragonBoatAtlanta).

Benefits of PT and MT

I recently discovered a new organization aimed at helping breast cancer survivors recover from treatment.

TurningPoint Women's Healthcare (http://www.myturningpoint.org/) is a comprehensive rehabilitation program that offers physical therapy, massage therapy, exercise and nutritional advice and professional counseling.

It was founded by Jill Binkley, based on her experience as a professional physical therapist and breast cancer survivor.

“Anyone recovering from knee surgery is automatically sent to rehab afterwards,, but this isn't the case for breast cancer patients,” she says.

Binkley cites numerous problems resulting from breast cancer treatment, including limited range of motion, lack of strength and flexibility, and pain caused by scarring and swelling of tissues.

“Anywhere from 30 to 50 percent of survivors up to four years post-op have shoulder, breast/chest wall pain, as well as pain in the donor site from reconstruction,” she explains. “Overcoming pain and physical limitations can help women resume their normal activities."

Getting your body "back to normal" after all it's been through and helping you resume your life can also help ease feelings of anger, hopelessness, powerlessness and frustration that your body isn't the same as before treatment. And we all know what that feels like.

Physical therapy and massage therapy can help with range of motion issues and pain control.

Plus, massage has an additional benefit, she points out: “There are several strong studies that show massage during and after treatment increases the immune system function."

As if we really needed an excuse to get a massage...

The Real Thieves

Our fast-paced and chaotic way of living--with traffic and telemarketers and texters and twitters--along with the stress of the economy and the total uncertainty of what the future holds has gotten to me lately. You could say, I've been on edge.

Then, this weekend, Mom told me that her neighbor--who is my age with a 14-year-old daughter--is on her 3rd round of chemo for breast cancer. What she has gone through over the past year, and continues to go through in fighting this disease, floors me. I don't know that I would have her resiliency to endure so much for so long.

I was quickly reminded of how I felt when I was diagnosed as Stage 3 over eight years ago, before I began treatment, and wondering if I would be alive a year later. I remember that all my daily irritations and problems and worries fell away. They simply didn't matter. They lost their power. Only living mattered.

And when my frustrations and bad attitudes vanished, I became intensely aware of the beauty and wonder of life. I realized--as so many cancer survivors do--that focusing on all the negatives distract you from the richness of all that's good in the world. They rob you from living.

I love how the priest in Les Miserables answers people who question his decision to not bolt his door at night to prevent robbers from entering. He responds that it's not thieves who steal silver that we should fear. Rather, it's the darkness of our souls that truly robs us of all that's valuable.

So, I am once again reminded of how precious life is--despite it's constant disappointments and challenges. And in today's environment, there are many. But it's amazing how gratitude can instantly reverse your viewpoint.