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.

OCS: The Fate of Women

A friend handed me, "Younger Next Year for Women: Live Strong, Fit, and Sexy - Until You're 80 and Beyond" by Chris Crowley and Henry Lodge. 

Although the title was off-putting, the subject matter caught my eye, since the authors talk about aging well for the "next third" of our lives (i.e., midlife until we die).  In addition to proper nutrition and connecting socially, the key to aging well is exercise and, in particular, a strong core--which we all know by now.  

But, it was another topic that caught my eye. Women are particularly vulnerable to developing a frightening, debilitating and destructive condition, and I'm afraid it has already happened to me.  It's OCS.  Old Crone Syndrome. 


Yep. After menopause, with all our raging hormones, we turn into easily irritated, rough, tough, cranky, demanding old women. I find myself snapping back more quickly than I mean to...wanting to throttle people over the least mishap...losing patience over the simplest things, and coming across more harshly in general.  Linda Blair has nothing on me.  Where's a Catholic priest when you need him?


There's no cure for OCS, except to be cognizant of your less than gracious state of being -- hopefully, before you lambaste the flippant sales clerk, or the texting teenage driver, or the entire world who is getting on your last nerve.  


It's a daily struggle for me, I have to admit, but at least I'm good at apologizing for my behavior. 

Fighting My Own Windmills

I've decided the life of a cancer survivor is similar to Don Quixote. Except his world was far more logical than our healthcare system.

After being blown off by my surgeon's office, who refused to give me a referral to see a physical therapist--silly me, for wanting to build back cut muscles, tissues, tendons and ligaments--I pursued the quest of finding a PT on my own (and on my own dollar, since insurance will only cover a referral).

You will find throughout the entire cancer process that it's completely up to you if you want anything done.

I looked for a great physical therapist who was also trained in pilades, since for us reconstruction girls, it's all about rebuilding our core.

I found the best in Jessica Locar, who, by the way, is opening her own business at the end of this month: STABILITY (www.stabilityatlanta.com). Stability offers physical therapy, occupational therapy, massage therapy, and pilades and yoga instruction--both one-one-one sessions and classes.

After 2 years of being out of whack physically, I am proof-positive that your core rules your life.  Without core strength, you fall off balance easily (hence, why all my friends over 55 years old have fallen and broken wrists and ankles), and there are no muscles to hold in your organs in your abdominal area (hence, the pregnancy look even when your ovaries are missing).

Jessica had the brilliant idea to ask for my medical records - which every patient should have on hand - so she could review all that had happened to me.  They revealed, of course, the removal of part of my abdominal muscles.  Voila! The answer to why I'm in such a miserable situation. 

As I've said in many of my blogs (rants), it takes a long time and a lot of work to build back your abdominal muscles, so the sooner you start, the better 

My favorite new toy is a foam roller (I bought from Amazon.com), which is essential a hard styrofoam log the length of your spinal column.  It's so terrific because you can work your abdominal muscles simply by lying down on the roller. That's it.  Apparently, you are using your abs just to be able to keep from falling off. There are also some stretches and exercises you can do while on the roller.

My less favorite toy is the pair of flex bands because they require me to use chest and back muscles that I'd rather keep dormant.  Although I think Jessica is great, I have found she has this sadistic streak in her that actually expects me to work hard, even when it's uncomfortable. Whining doesn't help.  I also got these torture tools at Amazon.com.

If you're in Atlanta, check out Stability, and I'll see you in foam roller class!

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.

To Dream the Impossible Dream of Getting a Physical Therapist

The question I am asking myself at this moment, is who do I have to sleep with in order to get a referral to a physical therapist?

This is rhetorical, of course, since I am crazy about my husband, but after my conversation with my surgeon's office today, I am quite dumbfounded by their refusal to get me a referral for a physical therapist.

I was talking with Glenda in the business office, my first mistake.  As I've said before, people who work in the office -- not the medical professionals -- could give a rip about whether you live or die, and let you know it.

This month marks 2 years since my major surgery, and over the course of these 2 years, I have worked out diligently to rebuild muscles, tissues, ligaments and other body parts that were cut during the double mastectomy/hysterectomy/reconstruction. I've done yoga, pilades, weight training, water aerobics, boxing--even worked out with a personal trainer--and I'm STILL having major issues due to weak muscles.

"Just why do you need a referral to a PT?" Glenda asked.  Well....let me see. Because I've been ripped apart from limb to limb, maybe?  She told me that my surgeon doesn't give referrals -- that I would need to get one from my primary care physician.

Let me get this straight:  my surgeon is the one who cut me open and stitched me back up -- not my PCP.  My surgeon works with breast cancer patients all the time, not my PCP.  So....wouldn't the logical person to refer me to a PT be the one who caused this condition in the first place? It was obviously too much for Glenda's little brain to comprehend.

On top of that, I asked for a letter of necessity for a professional tattoo artist, who specializes in medical tattooting for breast cancer patients. Women I know who used the nurse at my surgeon's office to tattoo hated the results.  It was like she used neon ink.

Glenda would hear none of it.  She was very defensive and said there was no way I could be able to choose who I wanted to permanently tattoo me.  The gall I had to make my own choice!

I don't wish people harm...really, I don't. But I do wish people empathy.  And it's obvious that Glenda has never had breast cancer, so she has no clue what it's like to be cut apart and put back together and figure the rest out.  She doesn't know what it's like to fall over while walking because you have zero balance because you have weak abdominal muscles...or struggle to put on pantyhose...or struggle to do thousands of the things you were able to do pre-surgery that now are difficult--if not impossible --to do post-surgery. 

She doesn't know what it's like to have to build your life back. Because all Glenda cares about is a paycheck...not a patient.

So, tomorrow, I will get on the phone and call my PCP and ask for a referral to a PT and a medical letter of necessity for tattooing...and hope that my PCP has more empathy - and intelligence -- than Glenda.