Sunday, March 20, 2011

This One's for Virginia

Ted and I were having a quiet Sunday morning when the phone rang.  It was my nearly 100-year-old mom and she was crying.  She was crying because she had just learned that our favorite nurse, Virginia, who is our "rock" in my mom's care...had just shared with my mom that she has breast cancer.  She is 38 years old, has a kindergartner and a 15 month old baby.  She just had her first round of chemo and will have surgery when the chemo is done.  So the first thing I wanted to do is to post this, so that all my prayer warriors can now become Virginia's army too!

Virginia asked me what to expect and here's what I shared:
  • You are the appropriate focus of attention, but you will quickly realize that it's a family will greatly affect your husband, your kids and those you love the most.  So remind people to care for them too.
  • Keep working if you can, but at a reduced level.  It helps to have something else to focus on during treatment and a reason you have to get going on the days when you don't really feel like it.
  • Be prepared for a long journey that extends 2-3 years beyond the end of your "official" treatment.  The end of treatment is really just the beginning of climbing your way back up the hill to feeling good again.
  • Lower your standards and give yourself a break.  Get rid of anything that takes your time that doesn't really need to be done or obligations that others can fill for now.
  • Party a lot....losing your hair?...make a party out of it.  Just finished another round of chemo? Time for a great glass of wine.  Celebrate all the steps along the way and mark them off as major victories to celebrate with those you love the most.
  • Talk to people who've gone thru it for advice, but remember that your cancer is your own...there are many differences in treatment, but there are common coping strategies that survivors can help you with.
So Virginia...if you read this blog...this one's for you!  I will be thinking of and honoring you as I walk the Race for the Cure on April 16th!

Sunday, January 23, 2011


Ah the best laid plans.  I went to my first Zumba class a couple of weeks ago and had an absolute blast....loved it!  But the next day was not old ACL-repaired left knee blew up..swollen and painful.

Once again, a little-talked-about sequelae of cancer don't feel good, you aren't as active, you lose muscle strength that's hard to get back.  So after a quick trip to the knee surgeon, the net/net is that there's no Zumba in my immediate future.  I've got lots of cycling and "elliptical-ing" ahead plus some serious strength training.  Turns out my left leg is one third weaker than my right leg..YIKES!  He doesn't even want me to walk for exercise.

So it's me and Teddy at the local YMCA for the next few months!  Just another reminder that if you don't use it...ya lose it...and the losing is at a fast and furious rate at our age!  Where are you Jane Fonda?

Monday, January 17, 2011

22 Goals Now Become 23!

Forget the 22 goals...I've now added another!  Any of you who know me well will smile knowingly as you read this!  Today, Starbuck's announced a NEW even bigger sized drink...called the TRENTA!

It's a full 916 ml (that's about 30 ounces) of pure Starbuck's bliss!  And for you physiologists out there, you're right!

That's a full 16 ml more than the average human stomach can hold!  They say that a Trenta coffee will have more caffeine than two Red Bulls...YIKES!

But who's counting?  All I know is I wanna be first in Venti Awake Hot Tea is now my Trenta Awake Hot Tea!

I'm pumped...literally!

Thursday, January 13, 2011

Zumba Update

I don't want to brag...but I just blew past the beginner level on Zumba-XKinect so watch this girlfriends...the ole' Jules is now OPERATIN' on the Club Level!

I'm just sayin!

Wednesday, January 12, 2011


Have you heard of Zumba?  The exercise style developed by a dancer in Columbia and brought to the U.S. in the late 90's that combines salsa, merengue dancing with exercise?

I first saw it when we were walking downtown this past summer and came upon about 200 people all doing a Zumba class together outside on the Indy Circle.  Right there on the sidewalk, I couldn't stop myself from starting to move my hips and feet to the beat and decided then and there, that when I felt better...ZUMBA was for me!

Welllll, I attended my first class at our local YMCA two days ago!  As I walked into this room of 20 and 30-somethings, I knew I was in trouble, but then I found "Lori" who looked about my age....and she came right over to me as if she was as worried as I felt!

All I can say is that I had a blast!  While the younger gals were I'm sure at heart rates in the 90-100's, I'm sure I was up above 180...but I didn't care.  I haven't tried to sway my hips like that in awhile which made me laugh right out loud.  But Lori and I did the best we could to keep up and laughed our way through it all!

One thing I know for sure...Zumba is now part of my exercise plan!  You should try it...great stress relief too!

Thursday, January 6, 2011

It's Been a Long Time!

I know, I have waited and waited and many of you have contacted me just to make sure I'm OK.

I am OK...just not myself yet.  My tests have all been great..which is a real praise.  I'm able to work, to travel, to play (tho' not as much as I'd like yet) and to keep at life at a fairly normal pace, tho' it tires me more than I'm used do so.  I keep reminding myself how great I've got I go in for my treatments every 3 months and see nearly everyone in the infusion center worse off than me.

Part of me wants to put this chapter behind me.  But the honest truth is...the whole cancer experience is not behind me.  I promised myself that this blog would reflect my true experience and that I would keep it up until I felt fully recovered and had accomplished all of my recovery goals.  As you'll see to the right of this blog...I'm not there yet!

So what's the story on that?  Well, if anyone had told me that treatment would knock me down as much as it did...if it had just been all about me, I would like to think I would have reconsidered.  But the truth is...I wanted more than anything to ease my kid's and Ted's minds, so I likely would have made the same decisions.

It's been so surprising really...all the stuff that goes wrong with your body as a result of treatment.  I can't pass by someone with a cold without getting it...although victory was mine as my granddaughter had a doozie at Christmas and for the first time...I didn't get it.  I had a major bout of flu in early November that knocked me out for 5 days in bed and another 3 at home, then another 3 at work when I likely shouldn't have been.  I've finally conquered the plantar fasciitis in both feet that plagued me from the very beginning.  Apparently the chemo kills rapidly reproducing cells, so it's not that the connective tissue in my feet was deficient, but rather the replacement tissue so needed to keep my feet renewed was inadequate resulting in literally having my soles look like bubble wrap...ouch!

The sequelae of this was LIMITED EXERCISE which means I'm still FAT! Losing the 15 pounds gained during treatment has proven the tallest challenge.  The picture here is of us hiking in Muir Woods which was fun but embarrassing as everyone did fine but had to wait on me to stop now and then to slow my heart rate.

Then's there's the thrush...which means a Candida infection in my mouth and throat which has steadily worsened since treatment.  My oncologist acted like it was no big deal and reluctantly prescribed a prescription mouth gargle...WORTHLESS!  Then I convinced another doc to prescribe me an oral med....nearly effective, but the moment I finished it...the thrush returned.  After researching it in the's a common sequelae of treatment and also the Zometa drug I'm still receiving and can cause major systemic symptoms...foggy cognitive processing, joint aches, inability to lose got it...many of the symptoms that still plague me.  So I'm going to try probiotics to try and restore the normal flora that eat these yeast critters!

I know I rarely whine...but I'm sick of it and I mean it! (a common phrase of two-year-olds and appropriate for this written tantrum!).  I can't put two weeks together where I really even feel OK.

I talk with like-treated women and they all tell me it took them 2-3 years to feel better from treatment.  I'm 18 months out.  I just wish my doc's would have prepared me's frustrating to have your expectations not met, so I wouldn't have developed them had I known.  I'm determined to help correct this for other women.

So that's why I'm keeping the blog up.  I also think it's useful as a reminder that if you know someone who has gone through treatment...the end of treatment is not the end of their cancer's only the beginning point of the healing process.  I didn't at all get that before and feel badly that I wasn't as supportive as I should have been to good friends who have gone through cancer treatment.  So if you read this and are more aware, then it's worth it to me to keep writing.

I'm eating super healthy foods which is nothing new for me...sleeping 9-10 hours a night...continuing my weight training...starting aerobic exercise at the YMCA 2 blocks from our house...and enjoying life as much as I can.  Here's to feeling like myself again!

Saturday, September 18, 2010

There's a Song in My Heart...and er...In Our House!

Teddy and I are having the coolest experience.  Nine days ago, we picked up Yoonshin Song from the airport and we are officially her "host parents" as she competes in the International Violin Competition here in Indianapolis.  This competition is one of the three most coveted and important violin competitions in the world.  Who knew right?  The winner of this competition has their career "set" so to speak, with a Carnegie Hall debut, a record contract, and the use of a multi-million Stradivarius violin for the next four years.

Yoonshin was born in South Korea but has lived here in NYC and Boston. studying for the last six years.  Thanks to our neighbors, Roxanne and Tom and Cindy and Matt, Yoonshin was well cared for as we traveled north of Seattle last weekend for a dear friend's wedding, so we missed her preliminary round performance.

Good news though...found out Wednesday night that she made the cut from 40 to 16 in the semi-final round!  We leave in just a few minutes for her semi-final performance and as I write this....beautiful notes are lilting through our condo!  As I was fixing us dinner last night...she was gracing our lives with the most beautiful music...and I said to Ted..."How cool is this?"  We go to sleep at night with this lullaby music in our ears.

We have learned so much about the world of top level violin competition...not the least of which is that our condo must be at 78 degrees for the violin to be "most happy" and Yoonshin's fingers to dance across the strings.  So Miss Hot Flash has had to find ways to stay cool!  Yoonshin is relentless...she eats, sleeps and plays the violin, stopping only briefly to talk with us at meals.  It's quite incredible to understand that she has been living this life since she was 3 or 4 years old.

So be sure to go to where you can watch Yoonshin's performance by clicking on "Hear 2010 Archived Performances" and where they will announce the six finalists Monday night at 11 pm!

Here's to you Yoonshin!  Our favorite to win for sure!