Livestrong Girls

Last night I met up with the girls I did the Livestrong survivor fitness program with at the YMCA when I was undergoing chemo.  We meet every couple of months now for drinks, food and a fun time laughing and commiserating over our cancer experiences.  We have a lot of camaraderie!  It’s our group therapy time, and what’s better than cocktails and some girl talk.  Each of us experienced a different cancer and different set of circumstances, but we all can relate to the challenges we faced.   We’ll have to take pics next time.

I was happy to hear from the other women that, like me, none of them had suddenly turned into a totally zen, super health-obsessed, fitness guru.  Not YET anyway (I’m still hoping I’ll get there).  We were still enjoying a hard drink and greasy food.  It made me feel better as all this time I’d been beating myself up for falling short of not having already become a huge superstar of health, wellbeing and enlightenment.  Why haven’t I fully accomplished this yet?  Why hasn’t it happened sooner and faster?  What the hell is wrong with me?  I mean, when you survive what we have, you really have no choice but to stand at the crossroads and re-evaluate your life.  I know I’ve been given this second chance, but I’m still majorly stumbling back into old, incredibly unhealthy habits. 

Why haven’t I already dropped to 115 pounds and live solely on organic lettuce and microgreens grown by my own two hands in my backyard, drink only purified water and meditate five times a day?  Well, I don’t know about getting to 115 lbs, my goal weight isn’t even that small, but I know I need to make serious changes. 

The wild thing is that although I certainly haven’t drastically changed everything in one fell-swoop, my life is changing, incredibly!  It’s true, Rome wasn’t built in a day, and my transformation won’t happen that way either, and that’s okay.  It’s OK!  It is happening!!!

Everything in its own time, right?  And always a work in progress!

 Shoulda, woulda, coulda no more!!! – Deb, get the hell out of here and move to Belize already!  Just keep a room ready for me to come visit!!!  Geez, maybe I should think about moving to Belize.  Will ponder.  ;-)

A Tribute to my Mother, Aunt and Grandmother

“Do not regret growing older, it is a privilege denied to many.” – Unknown

My mother, Mary, and aunt, Martha, both died in their thirties of breast cancer caused by our inherited mutated BRCA1 gene.  My mother was just shy of her 40th birthday.  It is believed that my grandmother, Doris, also passed away from breast cancer.  I learned recently that she died in 1965 at age 41.  I never met her.  She died almost 9 years before I was born.

When I was first diagnosed with triple-negative breast cancer (“TNBC”) last year, I knew then that it was also the type of breast cancer my mother died of.  I knew mine was a TNBC even before my breast surgeon confirmed it.  This means it is estrogen receptor, progesterone receptor and HER2/neu negative (ER-/PR-/HER2-).   I just remember during my biopsy my surgeon saying something about its characteristics, and me saying, “that sounds like a triple-negative, doesn’t it?”  and her saying, “yes, it could be.”  Prior to my diagnosis, I’d read articles that research shows a good majority of women with BRCA1 mutations present with TNBC; and, in the end my mother’s cancer had spread to her brain, also a classic sign of a TNBC.  Often TNBCs spread to the brain or lungs.  TNBC is more aggressive and hits younger women, as it did me, my mother, my aunt and my grandmother.

I was diagnosed with a 7 mm stage 1a, grade 3 (fast-growing), invasive ductal carcinoma, TNBC in my right breast at age 39.  The age my mother was when she died of it.  I had my 40th birthday on March 19, 2014.  I was lucky in knowing my family history and taking action early on.  I’ve been monitored closely for years and after testing positive for a mutation, screening happened every 6 months.  My cancer was caught at a very early stage.  I’ll never be totally out of the woods though.  Bizarrely, it seems a little scarier now.  TNBC is known to have more microscopic cells that can be found in distant sites of the body later, and not all cells can be removed with surgery.  Although I’ve now taken the most aggressive approach, they don’t really have sufficient ways to continue to screen you or a desire to continue exposing you to the radiation that comes with screening.  However, I guess the point is to now go live your life and not harp on the what-ifs any longer!

I was at my father’s house yesterday looking through old papers and found six or seven dusty photo albums full of old photographs.  These images of my mother and aunt are some of the photos I came across.  They capture both my mother’s and aunt’s sweet-natured beauty.  The baby is my older brother, Ryan.

Mom-M-R  Mom n M  Mom and R  Mom  Mom and Dad on boat


The Precipice of Change

On my journey of transformation, a massive, vertical cliff of discomfort and change calls to me.  It says, “come climb my steep, hard surface.  It will be very difficult and perilous, but not impossible.  Here is where the real work begins!”

The past week has been rife with supposed conflict and negativity, and my moods have consistently spiraled downward.  However, if I step back and look at the bigger picture, all of it is pushing me further toward unprecedented change, both internally and externally.  Like a carefully composed opera.  I’m actually being forced to step out of my comfort zone and clearly choose which way I will go on the road ahead. 

I’m a fairly stubborn person (to a fault and in all the wrong ways) and, even in misery, have become quite comfortable in my own situation.  It’s not even close to being the life I desired for myself, but it’s been familiar and comfortable.  I settled into what I believed I deserved.  Now, something out there, or in here, wants to quash those believes.  It doesn’t want this same existence for me.  God, the Universe, that inner seed–Once it starts growing, there’s no stopping it.  The seed of change has sprouted!  Now, I must love it, water and feed it, and call it George :-), so that it will flourish. 

I’ve had to make some incredibly hard choices in recent years, and more to the point, heavier, heartbreaking sacrifices–but they didn’t kill me.  Write it again–They didn’t kill me.  I choose whether my life will be diminished by these events or not.  I can’t kid myself, some days are undeniably hard.  Some days I can barely get out of bed, but I do.   Now I’m trying to face those days while looking through a more open and honest lens.  It doesn’t always work.   

I think some people may think that I’m done with the bad stuff–the hurdles, I survived the cancer.  I’m good now.  But that’s so far from the truth.  Yes, I’ve won that battle for now; but I’ve been seriously wounded and still standing in the full midst of the war.  Like a storm still in full force.  Yes, I survived that massive wave.  It didn’t take me under, but I’m still being rocked this way and that with an, at least perceived, ongoing threat of capsizing. 

Time to climb the precipice.


Removing ovaries cuts risk of death in gene carriers (USA Today)

Liz Szabo, USA TODAY 4:03 p.m. EST February 24, 2014

Removing ovaries cuts risk of death but causes serious side effects.

Women who inherit mutations in high-risk genes that sharply increase the risk of breast or ovarian cancer can reduce their risk of death by 77% by having their ovaries removed by age 35, a new study shows.

The study involved mutations in the genes BRCA1 and BRCA2, which cause 5% to 10% of breast cancers and 15% of ovarian cancers, according to the National Cancer Institute.

Up to 70% of women who learn that they carry these mutations choose to have their ovaries removed to reduce the risk of ovarian and breast cancer, research shows.

In the study, in Monday’s Journal of Clinical Oncology, surgery offered different benefits based on the exact mutation.

Women with a mutation in the gene BRCA1 get the clearest benefit to ovary-removal surgery by age 35, says study author Steven Narod, a professor of medicine at the University of Toronto. His study didn’t find any ovarian cancers in women with BRCA2 mutations until age 40. So BRCA2 carriers can likely wait until age 40 for ovarian removal, he says. … [click here to read more]

Off with the wig, Baby!

Okay, so this morning I decided it was time to go rogue at work, so off with the wig!!!  Finally!!!  They are so hot and itchy!  My hair is still super, super short but at least covering my head enough, I think.  I’ve gotten rave reviews from my co-workers, so that’s good!  Here are a few wigless selfies I took today at work.  Wig be damned!  Yay!

20140205_11070120140205_114856 20140205_11511720140205_113038

Chemo Brain ?

   I think I may have a little bit of chemo brain goin’ on.  One of my attorneys is not happy with me as I booked her on economy instead of first class.  Oh, the torture!  Another asked me for a manilla folder and I started to give her an envelope.  Then we had a complaint to file in a New York court which I totally could of looked up the rules which state you have to file an initial complaint in the traditional manner instead of through ECF, but I didn’t.  Not a good day at work!!!  :-(

Damn old fart – WHAT?

So my hair is coming back.  Yay!  Only thing is it appears to be coming in gray with white hairs here and there.  Yikes!  I’m not old yet–Way too young for gray and white hairs!!!  Ugh! :-(  I guess at least it is coming back in.  I’ve noticed my eye lashes and eye brows coming back too.  I had another follow up with my surgeon today and so far everything looks good and seems to be healing fine.  That’s all good news!

Stanford’s New Computer-Based Decision Tool for Women with BRCA Mutations

The following is taken directly from the above-referenced link:

Purpose and Intended Use:   This decision support tool is designed for joint use by women with BRCA mutations and their health care providers, to guide management of cancer risks. This tool is not intended to replace any aspect of medical care. Testing for BRCA gene mutations, and managing hereditary cancer risk, is a complex process which should be supervised by expert medical professionals. The goal of this tool is to inform discussion between providers and patients about options for reducing cancer risk.

Intended Population:   The decision tool calculates the probability of health outcomes for women ages 25-69 who carry a BRCA1 or BRCA2 mutation, and who have never had the following: 1) cancer; 2) screening mammograms or magnetic resonance imaging; 3) preventive surgery to remove breasts, ovaries or fallopian tubes; 4) preventive medications such as tamoxifen or raloxifene.

Assumptions Made:   The tool’s calculations result from a computer simulation model, not a clinical trial. The decision tool uses data from clinical studies of BRCA mutation carriers on cancer incidence and the efficacy of screening, preventive surgeries, and treatment, and data from the general United States population on survival according to breast cancer stage, hormone receptor expression, and grade. Long-term validation of the tool’s model-based estimates is warranted. Articles describing methods are available on the publications page. Medical terms (in red font) are defined by clicking on each term, and in the glossary.

Please click on the above link to find out more and to use the decision tool.

No pain, No Gain

Dag-blamitt! :-)  I’m still having significant pain issues.  Why does it take so long to heal?   I’m ready to start implementing changes and getting into a good fitness routine.  That’s hard to do when your body doesn’t yet want to cooperate.  Some things I can start implementing.  Now that I found my wallet, it’s time to revisit Trader Joe’s and get transitioned to a more macrobiotic/raw foods based diet.  I feel I’m just going to have to work through the pain, grin and bear it so to speak, as that may be the only way to heal.  I have to move the upper part of my body.  I think if I’d chosen a full mastectomy vs. skin-sparing, I wouldn’t have such pain issues.  I think the majority of the pain comes from the remaining skin bunching and adhering to the chest wall, basically scar tissue type pain.   Hopefully, I’ll get into the Star Program at Seton Hospital that my oncologist’s office has referred me to and start physical therapy to get me into better shape to start a good fitness program.