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.

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 ripped apart 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 because of my weak abdominal 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 have 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 to go to a professional tattoo artist, who specializes in medical tattooting for breast cancer patients and others with scars. The reason is that I have several friends who used my surgeon's nurse to do their tattooing and they hated the results -- she did something like use neon ink.

Glenda would hear none of it.  She was very defensive and told me there was no way I could get a letter and be able to CHOOSE who I wanted to permanently tattoo me.  The gall I had to actually want make a 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.

Why Do the Heathen Rage?

Why do the heathen rage?  I'll tell you why.  Because they're going through menopause.

BRCA surgery includes an abdominal hysterectomy, since ovarian cancer is one of the dangers of those who carry this gene mutation.

And going through major surgery for breast and ovarian cancer--and then, getting thrown into menopause on top of it all--is more than a girl can stand.

What's more, breast cancer survivors, unlike other women, can't take hormone replacement therapy to relieve the symptoms of menopause...not that I was planning on taking them anyway since there are too many controversial issues surrounding them. However, it leaves one with few options to cope.

As my oncologist said to me recently, "It's like you've been thrown into a deep well and have to dig your way out of it."  I think she meant to say hell rather than well. 

I can't help but think that major surgery--with all the cutting of body parts, and heavy doses of anesthesia and drugs, and overall stress on your body--contributes to the harsher reality of menopause.

Symptoms include electric shocks pummeling my body sporadically--like a mugger attacking me off guard--and negative emotional surges (i.e., rage). The combination of these two things, alone, qualify me for combat.

Other symptoms:  crying over bad 70s tunes and even more pathetic commercials...distraction and forgetfulness (no brain)...and the propensity to be irritated easily by the mundane things of life.

The solution?  I've become more fanatical about healthy eating habits and increased my exercise routine.  I rest and try to reduce the To Do list to lessen stress in my life. There seems to be a major correlation between stress and hormonal surges.

And, then, there's "alternative (complementary) medicine."  Although it seemed like voodoo, I decided to try the Chinese herbal medicine route. After knowing a few women who swore by it, I was desperate enough to try.  First of all, I was amazed at how extremely normal this herbal guy was.  I was expecting someone who looked like Jerry Garcia, but he was clean cut, wearing khakis and loafers.  Even more, he had an easy-going, low-key, engaging personality. He even had a sense of humor.

He listened to my litany of woes, and ordered me a concoction of herbs.  I was highly skeptical when the package arrived at my house a couple of weeks later.  But after gulping down a few capsules, the hormonal surges subsided.  Really.

The herbs are listed on the side of the container, so it's no secret what they are. Frankly, though, I don't care if the capsules contained dirt. I would take them because they work.  I know this because I quit taking them a couple of months ago.  I was feeling okay, and figured the worse of the symptoms were over.  Wrong and wrong again.

All it took was a little stress added to my life and the surges reappeared.  And it wasn't pretty. I ransacked my bathroom cabinet and came up with one container of the capsules with only a week's worth remaining.  I immediately popped them in my mouth and presto! The Nightmare on Elm Street within me disappeared.

So, I made an appointment with the herbal medicine guy again to get back on track. My plan for getting out of this well during menopause is to take the herbs and apologize constantly to everyone who has to suffer through this with me.

Recovering Surgi-holics

It's been since early December, after my final phase of reconstruction surgery, when I last blogged. Who has time to blog, I ask, when you're focused on getting back on your feet again?

With all the dialogue there is about BRCA testing and whether to have surgery or not, little is said about life after surgery.  At least, that's been my experience and the experience of others I've talked to.You get a lot of information going into surgery about what's involved and immediate recovery, but long-term issues are not addressed.

Yet, the consequences of having your abdomen cut from top to bottom are enormous and long-term.  I recall my discussion with the breast cancer survivor who was a physical therapist and her shock when she realized that bc patients typically aren't referred to a PT after surgery.

Physical therapy is critical because you emerge with a totally different body with multiple challenges, and you spend an amazing amount of time and effort trying to get back to "normal." 

That's why most of my blogs concentrate on long-term recovery from surgery--because this is the part of the BRCA experience that's the least talked about but has tremendous implications about your quality of life going forward.

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.

I Should Have Chosen Scotch

Nicholas Kristof, one of my favorite columnists, had a column in the New York Times called "Cancer from the Kitchen?" regarding contaminants in our everyday lives and their link to breast cancer...such as certain plastics.

So, all this time, when I was consuming gallons upon gallons of water from those nifty, convenient plastic bottles, I would have been better served sticking my head in the toilet like my dog. 

Not too long ago, my dad showed me an article about high consumption of grapefruit juice (red, in particular) and increased breast cancer risk. Since I had been consuming grapefruit juice like it was an elixir of love, I immediately stopped.  And all this time I was drinking juice, it would have been safer drinking scotch...at least from a cancer perspective.  Except that there's a correlation between alcohol and breast cancer.

A girl just can't win.