Game Plan

Ok...now I have some great news for me.

I am STABLE again with NO drug changes...had all my new scans done at my new treatment facility, MD Anderson last week .....they compared with scans ordered from my former onc in June.

NOTHING has changed... My Ca27-29 has stayed at 90 for 4 months....SOOOOOOOOOOOOO....they want to reserve the Tykerb/Xeloda for when I really need it.

So after mets came back in June...I have waited all this time to find out they are unchanged. By the way...MD Anderson ROCKS!

Game plan: Stay on Herceptin and Zometa...change out femara and replace with faslodex. Improve QOL by managing pain in chest better (related to surgeries last year NOT tumor progression) with gabapentin (for nerve damage) Drink a gallon of water a day, light exercise, and live my life!

WHEW!!!!!!!!! I like that plan!!!!

Thank You SO much for all the encouragement, cards, emails, good wishes and holding my hand during this Roller Coaster Ride....Namaste.

Needed to Vent

 

SO Happy it's College Football

Watched the last 2 games PPV....when are we going to play a real football team?

Couldn't bear to watch one NFL game this Sunday.

Football is always played on Saturday as far as I'm concerned. (Unless it's a Bowl Game of course).

I am hoping to get to a few games this year. Would love to see the ol' ball coach when he shows up with the Woodcocks in the Swamp. That's gonna be one emotional game.

The last 6 weeks have been CRAZY

So much has happened since the last time I posted. I know I promised to keep this up....but it has been tough. Part of the reason is because of the Roller Coaster I have been on emotionally.

Some of the things 'of note' since last my last post:

In August I spoke in front of about 300 people at a breakfast kick-off for American Cancer Society's Making Strides (5k) event coming this October. It was very nerve wracking (sp?).

And a big thanks to Cindy and Suzie and Jeff for coming to the event to "hold my hand". It looks like I did ok becuase I have been asked to speak at another event at the Citrus Club in front of yet another large group October 5th. If I could just figure out a way to get paid speaking about Breast Cancer I'd have it made.....

I STILL, as of this date, have NOT started any new treatment for my rediscovered mets (back in early July?) SOO....it's been a long, long wait and it's made me nervous as hell. A little too nervous.

I found out I qualified for a new drug Tykerb (see earlier post) but my Oncologist's office has taken MONTHS to get into the program. The waiting has made me borderline NUTS....alright, if you talk to Jeff he will correct me and say CERTIFIABLY NUTS. Of all the thing I have been through in the last four 4 years....this waiting has got to be one of my worst experiences.

I finally made the decision to switch Oncologists (HUGE UNDERTAKING)....and as of today I am now a patient of MD Anderson. (Ranked 2nd in Nation for Cancer Care behind Sloan Kettering)

I had my first consultation today with the Oncologist and got the full dog and pony of the facility.

I am going away this Wednesday-Sunday with a bunch of girlfriends to San Destin. (Never been there before and now have been twice in one year!) Once I get back..starting on September 18th I begin practically a full week of tests and scans. Seems like every day that week I will be at Doctor's. By Sept 22nd I will get instructions on my new treatment....whatever it may be. I am just relieved to be MOVING in any direction.

This so called summer of fun and surfing was spent mostly hand-wringing and waiting and being very anxious and irritable. I NEED this vacation. I'm sure Jeff could use a vacation from me too!

ALSO big news: I am taking a break from work for a few months. It was something I needed to do primarliy so I could focus on getting my treatment in the right direction....which turned into a full time job.

It was tough to pull away from the job and the company I work for. I have been with the same company for 2 1/2 years and they have been great to work with. I miss the "action"....but I'm starting to relish the free time.

To anybody out there in blog world who actually reads this damn thing...sorry I have been so remiss.

I will have tons to talk about when I get back from my trip to San Destin....also will have tons to talk about with my new Doctor's and treatment...... AND don't forget it's almost PINK RIBBON MONTH (I used to love the color pink) October was my favorite month and pink was my favorite color. Can we turn BC awareness month into like November or March and make the color yellow or something else.

OK mostly being sarcastic....October can be overwhelming when you're not only a survivor but still a patient. BUT I am involved in umpteen fundraising and BC awareness events in October. So you will be hearing more from me....probably directly too...to hit you up for some type of participation!!

And I am sure by October I will be hitting you up for job leads too! Something that pays a ton of money with great benefits and no accountability. :)

Jeff is Going to a Special Conference in Baltimore

I am so proud of him for doing this.....I am a lucky girl.


The First National Male Caregivers Conference: Men Empowering Men to Care for Women with Breast Cancer

August 18–19 in Baltimore, MD

The conference will focus on educating and empowering men to be effective caregivers when breast cancer strikes a female loved one. MABC will provide a forum for men in similar situation to get to know each other and share their real life experiences.

Conference Objectives:

Focus on navigating the crisis of breast cancer with a proven problem solving technique.
Provide an ongoing forum for men in similar situations to get to know each other and develop a support network.
Improve the quality of survivorship of the patient.
To learn an innovative proven problem solving technique tailored especially for men supporting women with cancer, which will improve the quality of survivorship of the patient.

Extra Benefits

Attendees will receive a scholarship for their travel, hotel accommodations, and meals.
Attendees will receive a stipend at the conclusion of attending the full conference.
Attendees will enjoy an evening baseball game and a plenary session in a skybox at the Baltimore Orioles’ Camden Yards.

Conference Agenda
Day 1 - Friday, August 18, 2006
3:00–4:30 pm
Registration
5:00–10:30 pm
Plenary: Opening Session at Camden Yards (including dinner in luxury box during Orioles vs Blue Jays game)
Day 2 - Saturday, August 19, 2006
7:00–8:00 am
Continental Breakfast & Welcome
8:05–8:35 am
Plenary: Partners’ In Survival™ Training Workshop & COPE
8:35–8:45 am
BREAK
8:45–9:30 am
COPE in Action
9:30–9:45 am
Form Small Groups
9:45–10:15 am
Group COPE Practice Session
10:15–10:30 am
BREAK
10:30–11:45 am
Group Reports
11:45–12:30 pm
LUNCH/SPEAKER
12:30–1:30 pm
COPE Review
1:30–2:00 pm
Final Questions/Conference Evaluations

Partners In Survival™
Partners In Survival™ is an educational workshop designed, developed, and facilitated by Men Against Breast Cancer in conjunction with physicians, social workers who specialize in breast cancer education, other health care professional, as well as breast cancer patients and family members. The objective of Partners In Survival™ is to provide information and education in a manner that breast cancer patients and their partners find easy to use and apply to their lives so that they can more effectively manage the breast cancer crisis. Partners In Survival™ workshops focus on how breast cancer impacts individuals as well as the family unit. The workshops include practical tips to help manage the many elements of the breast cancer crisis, including, doctor's visits, household responsibilities, children, intimacy, communications, and more. Specific emphasis is placed on men understanding the physical and emotional needs of their female partners

I start a new Drug called Tykerb August 7

A new experimental drug delayed the growth of advanced breast cancer in women who had stopped responding to the drug Herceptin and were out of treatment options, doctors reported Saturday June 3 2006.

The experimental drug, Tykerb, worked so well that an international study of it was stopped early, in April, based on results in 321 women.

Those who received Tykerb plus the chemotherapy drug Xeloda had no growth of their tumors for 8 1/2 months. That compares to 4 1/2 months for those given only Xeloda.

Tykerb's manufacturer, British-based GlaxoSmithKline, said it would expand global access to the drug under compassionate use provisions, and would seek approval to sell it in the United States and elsewhere later this year.

"This is huge," said Dr. Roy Herbst, a cancer specialist at the University of Texas' M.D. Anderson Cancer Center in Houston, who had no role in the study but has consulted for Glaxo in the past. "The next step will be to use it in patients instead of Herceptin up front," to see whether it is more effective, he said.

Herceptin and Tykerb are members of a new generation of cancer medicines that more precisely target tumors without killing lots of healthy cells. Herceptin has been an important option for many women with advanced breast cancer, but eventually it stops working and women succumb to the disease.

Tykerb works in a similar yet completely novel way. Like Herceptin, it targets a protein called HER-2/neu, which is made in abnormally large quantities in roughly one-fourth of all breast cancers. Herceptin blocks the protein on the cell's surface; Tykerb does it inside the cell, and blocks a second abnormal protein, too.

In the study, Tykerb also showed signs of being able to prevent cancer from spreading to the brain. That happened to four of the 161 women given Tykerb and Xeloda, compared to 16 of the 160 women given Xeloda alone.

Tykerb has one big advantage over Herceptin -- it's a pill instead of an intravenous drug, which should make it cheaper and easier to use, doctors said.

YSC Girls in Destin

All my beautiful girlfriends in Destin Florida Memorial Day Weekend.

I had never talked to a woman with Breast Cancer before 2002. And now I feel like I have friends all over the country.

We are all so different but yet so much a like.

We all had or have BC....By the way, the youngest in the picture was diagnosed at 24 and is now 26.

Before the Shit Hit the Fan

OK OK...I'm back blogging. Almost couldn't bear to do it.
My sister Stacy just sent me this picture of us. It was taken on my 40th birthday.

I have never seen this picture before and it made me incredibly sad.

First thing that set me off was that fact that SINCE this picture was taken, my sister (and my two beautiful nephews) have moved to Mars. (ok California, but it might as well be Mars). So now, if I am lucky, I get to see Stacy and the boys twice a year.

The rest of what set me off is really shallow...please indulge me.

In that moment I was blissfully unaware of what was around the corner. Not everything in my life was perfect (had major marital problems that were about to explode)...but I physically felt as good as I ever did in my whole life.

My hair, which was always an issue, was finally at a cut that I loved, my weight was great, my energy was super high, my job was going great, my confidence was way way up, I was always on "the Move", my social life was extremely active, ....I LOVED telling people I was turning 40....nobody believed it.

Little did I know when that picture was taken...what was lurking in my right breast.

I MISS that woman in that picture. And no she is not returning. I caught a glimpse of her for a few months between my first treatment and my reoccurance (metastasis really)....but she is long gone.I guess things could always be worse....at least I got a chance to BE that woman. And at least I am here to remember her.

I just wish it didn't make me so damn sad.

KITTENS KITTENS KITTENS!!!!!!!!!!

Can you spell Kittens? T..R.O..U..B..L..E

These guys are SOOOOOOO adorable....about 2 weeks away from being adoptable. I think I have homes for 4. Need another victim! Any takers? They will be fully weaned and potty trained...I promise!

 

And Life Marches On

Once Again I go too long without a post. I guess because I am feeling so much better I get a little distracted. I will try to catch everybody up on the last few weeks.

FIRST THINGS FIRST:

Our neighbor John has moved into his new home. I would not say "settled" he still has tons of stuff to unpack...but he is in, and VERY happy. The house is gorgeous. He is only a block or two away. Jeff is just great about visiting him! He went over this morning to cook John breakfast! Looks like John's family will be moving here sometime this summer...which is very good news.

WE HAVE KITTENS...John has a cat (his first). A little kitten adopted John sometime last year. In the confusion of the move she hid under a neighbor's shed for about a week. I FINALLY got her out from under the shed. Turns out she was very pregnant. We decided (actually I decided) to keep "momma" with me as John has very little experience wth cats, especially pregnant cats and kittens. Momma had kittens 2 1/2 weeks ago....5 ADORABLE balls of fluff. They are still teeny and not causing any trouble (yet).

John will take Momma back with one kitten...I've found a home for another...so 4 more to go! I will post pitctures so you can see them. We've got about 6 weeks to go before they can be adopted...ANY TAKERS????

ON THE HEALTH FRONT:

I am feeling pretty darn good. Still not 100%.

Most of my 'issues' are very minor and we're working through them. I am pretty out of shape as I was practically bed (house)-ridden for so long. I am slowly starting to move more. Went for a 3 mile walk the other day and boy am I feeling it. I just need to keep it up. I got the OK to add weights to my regimen.

I had BETTER get in gear...I have committed to do the 3 Day walk for BC in October...it's 60 miles. Yes 60 miles. Don't worry...I will post A LOT more about this because I will be hitting everybody up for money for this event! :)

WORK:

Work is going great. I don't really post too much about work, but I feel the need to mention it. The company I work for, VoiceObjects, has just been incredibly supportive throughout my ordeal. They have been very flexible with my schedule and my responsibilities over the last year. It looks like a lot of the stuff I have been working on has come to fruition too..I think they are glad they have kept me around ;) There is a big industry conference happening here in Orlando next month so I get to see everyone from VoiceObjects here in Orlando. I'm pretty excited. I haven't really seen much of anybody from work since last May! So almost one year.

ALSO:

Jeff and I are heading to Ft. Walton Beach over Memorial Day Weekend. Pretty psyched about that. We really need a break. Seems like we're stuck in the house a lot. A few of the women from my BC support site, YSC, will also be there. So I get to meet some of these women face to face! It's going to be an emotional weekend for sure. Lots of happy tears in our beers.

I am really looking forward to this summer in general...last year was just a blur. I have a lot of catching up to do! We are going to try and go to the beach as much as possible. I've got the Beach Bike...now all I need is a board. I hit the waves a few years ago with Diane (4th of July) I was pretty pathetic....need some work there for sure! But hey! Would rather have surfing as a summer goal as opposed to "getting through chemo"!

IT'S GREAT TO BE A FLORIDA GATOR!!!!!!!!!!!!!!!!

 

UF 73 UCLA 57

 

Try Not... Do or Do Not. ...There is No Try.

"Named must your fear be before you banish it you can".....Yoda

LAZY DAYS

 

John Update

Looks like our friend and neighbor John will be able to close on his house April 3rd. For those of you who know where Jeff and I used to live...Ololu....John is buying the blue house directly across the street from our old house!

Since it is only 2 blocks away, Jeff tries to take John by the house every day. We have already introduced John to some of his new neighbors (our old neighbors). Our John has turned into quite the celebrity around here!!

We went to Julie's Waterfront today (it's GORGEOUS out) and had fried grouper and fried shrimp. John loved it. This man eats with such GUSTO!

His appetite is awesome...he is always looking for work to do around the house...he has been on many errands with Jeff ...and he is "Sleepink like An-jell!" (You have to imagine that with Polish accent)

The day after closing John's great niece and her husband are driving down from Ct. to move in with him. The niece is Pregnant!! There will be 3 generations in the same house! Isn't that cool?

We've been very busy with our neighbor John.

Thank you to everyone who has called or emailed me asking if everything is ok. Jeff and I have been VERY busy lately with non-health related issues.

Work is going extremely well. And I have been running around doing things I haven't done in months and months. I am not on the computer as much anymore.

One of the things keeping us busy has been the saga going on with our neighbor John.

Jeff and I live next door to this amazing man. His name is John Sitek. He is 92 years old and has lived in this house next door for about 25 years. He is a Polish immigrant who served in WWII for BOTH the Polish Army and the US Army after he immigrated here. His "Lady" passed away about 2 years ago.... and he is all alone.

He keeps his yard and his house meticulous. And he watches over Jeff and I like a Guardian Great Uncle. He is generous, gentle and the sweetest man....constantly bringing us gifts of food, candy and wine.

We also look after him. Or actually Jeff does....translating confusing bills, power washing his driveway, picking up Polish relatives at the airport at 2:00 am etc. etc.

Here's the bad news....he was never married to his Lady and the house was in her name. Unfortunately, no Will could be found and the house reverted to her family up North.

John has lost the right to live in his home for 25 years (can you imagine?) and a bunch of us in the neighborhood have been very, very busy trying to sort things out the last couple of weeks.

We found him another house in the neighborhood and he will close on it April 7th. He is staying with Jeff and I (during the day) and another neighbor (during the evening) as guests until the closing. We packed him up and put all his stuff in storage this past weekend.

We have also been in contact with his family in Connecticut frequently. The family (great great neice and her husband) will be moving here and moving in with him to look after him in right after the closing.

John has told me many times he prays for me every day...twice a day...over the last 7 months or so of my ordeal, and I believe he does in fact pray for me every day, twice a day.

He also gave me a Pope John Paul medal that I hold tight and I hold dear. Those of you who know me well, know I am NO Catholic ( think agnostic Buddhist Jew)....but I believe Karol Wojtyla was an extraordinary man, who transcends every faith and belief on this planet. (Audra and Stacy can vouch for my special feelings for John Paul).

OK here's the deal....Please help me in praying to Pope John Paul Karol Wojtyla to continue to pull some strings for my neighbor and his fellow countryman John Sitek. John deserves Peace and Love in his final years.

The last few weeks have been quite an ordeal and a bit more than Jeff and I could handle on our own. So many of our friends and neighbors pulled together in giving a helping hand to this wonderful man. We couldn't be more grateful.

I have a 92 year sitting on my couch right now...petting his favorite dog and smiling ear to ear.

Cassadega Kitties

Went to Cassadega yesterday for lunch.

http://www.cassadaga.org/

Didn't get a reading....but was greeted by LOTS of cats. These guys all came off of various front porches to say hello...it was pretty cool.

We walked the town and actually visited the cemetary. Very interesting. This town has some "history". Nice to get away from the noise and crowded roads and strips malls and and just general congestion....even if it was for just a few hours. Town is extremely peaceful. Gotta have quiet for the spirits.

Oh.... I have obviously had an accident with my head and a bleach bottle.

Picture from the 5k!

I know this is late in coming...but YAHOO Jodie for taking the pictures and sending them out...Jodie is hilarious..... this is what she wrote:

Hey Lady-Track-Shackers!

I'm impressed with how hard and fast everyone was running here! Melissa and Susie look pretty winded. Audra was running so fast she lost her left leg. Nice, deep stride Nancy!

What's even more amazing is Melissa is able to run AND hold her coffee ... and I was able to run backwards and still take this professional picture!

More pics to come ... Jodie :-)

What's really funny is that I'm actually in the race with my WIG ON. Geez....do I have some Vanity Issues? Thank goodness Jodie didn't take too many at the END of the race because that sucker was sideways and looked like a dead animal on my head.

WOW! 10 days since I've written in my Blog?!?

I have heard from so many of my friends and family...wondering where the heck I've been?

I guess since June 2005 I have been completely CONNECTED to the computer. Always on IM, Always on email, Always on my favorite support site....And it seems like I've "dropped out". But the REAL reason I been hard to reach is I've "dropped back in to life". With a VENGEANCE!

The last 2 weeks have been a whirlwind.

Visited Family in Tampa, hung out with my best freind from 8th grade Iris and her unbelievably sweet family, had an AWESOME Valentine's day, went to my first face to face meeting with a client since this started in May, went to a trade show, had a buddy from work come into to town and partied with him and friends, and Jeff's Mom and Sister are here from out-of- town. And oh yeah!....Completely detailed the house, got the little bit of "down" on my head colored (think Easter Chick), been shopping for clothes and new make-up.

I know, I know...big deal right? I have a few girlfriends that can do all that in one WEEKEND, not 2 weeks...but for me it's a TON of activity.

I still have a few "issues" from the chemo and the surgeries....but my energy has returned. I feel like I am making up for lost time!!!

The last time I came out of treatment (in 2003) I think I actually experienced Post Traumatic Stress Syndrome. This time it's a little different....maybe because I came so close to saying the "final goodbye" ( not good with goodbye's) But I think the real reason I am so "high" on life is because of the overwhelming feeling of love and support from my friends, family and most of all my sweedy, Jeff. I feel like George Bailey on It's a Wonderful Life. ( I wonder where Zuzu's petals are?)

If I actually began to thank everyone for their kind words, support, cards, phone calls, gifts, prayers.....I just really don't know where to begin. My heart is overflowing with gratitude.

So.... now I am on the "upside of the roller coasster" (stole that from Stacy).....I wonder how long it will last?

Love you all!

What the F&*% do we know??

Have you seen this movie?? www.whatthebleep.com GEEZ.

Strange but VERY interesting.....It's playing on Satellite right now. I've got to get myself a Quantum Physics for Dummies book.
http://www.dummies.com/WileyCDA/DummiesTitle/productCd-0764583484.html