anyone starting chemo in Nov 2005

Mary-Lou

Thanks Deb! LOL you must have come on right behind me. I'm looking forward to our trip, I will be needing it by then.....

Margerie

Hello from beautiful Lake Tahoe California!!   We are at the cabin all week and I don't have internet except at the clubhouse.  Dear Hubby took the kids fishing this morning. I am outdoorsy, but not a fisherwoman. So I hiked down to the clubhouse to get my online time.  Beautiful weather. We went out on the lake in the boat yesterday.  It was a fabulous day, went to Emerald Bay.

I love your grand daughter's photo ML. What a beautiful girl with a great smile (and heart too I am sure)

I will touch base next week.  Am excited that a few of you might make it!

Mary-Lou

Marg-  Thanks , she is pretty special. Growing up very fast now.

Glad to see you are getting to enjoy the summer. We are going to the river this week end. Hope to fish and get the boat in the water. I want to go tubing if the water is up. There has been plenty of rain, so I think we will be okay.

Our anniversary is coming up on the fifth of July. So we will go over a day early before all the family arrives. Just need some alone time.

I have been to the pool with the grand children, got a little to much sun. I forgot to put the sun screen on my upper arms enough. Sebastian had me so busy, he is a water rat! Hayden just slept through it all.

And of course Ashley was all about the "BOYS" LOL Boy she is hard to keep an eye on. LOL, I was always the one with the "BOYS" She is with her mom now, so I hope that all goes well.

 I just can't wait for our trip, I was talking about it yesterday with Michael. All he worries about is  the flight to and from. I told him not to worry, I made it all the other flights.

Well , guess I will check out the rest of the boards and see what is going on.....Love to you all....

Anonymous

Hi Sisters,

Sad news.   KariLynn from the boards passed away this afternoon.  If you look at my recent posts, you can find the thread if you don't see it on active topics (I'm sure you will-it's a pretty hot topic at the moment). 

I can't believe how fast it happened.  She was planning a last vacation with her kids and everything. 

I'm so sad. 

More later-

PS-tomorrow (yep-the 4th) is my birthday!  I made it to 34!!!!!!!!!!!!!!!!!!!!!!  

Love and prayers, Deb

Mary-Lou

It may be spelled wrong, and it may be late....but it is full of love!

Mary-Lou

I wanted to share my picture at the relay....I was very proud to be sporting the survivors shirt....was my 3rd relay.

Mary-Lou

I took my umbrella for shade, it was so very hot

out that day. It's colorful don't you think?

Mary-Lou

I hate being here alone ....

Anonymous

ML-your BUTT LOOKS TINY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  

Va vaaa vooooom!!! 

Mary-Lou

Deb~ That is because the rest of me is soooooooooooooo "BIG"! 

AnnaM

Back in France and hubby has had a whole lot of work done to the new house, new paint (except 2 rooms still to be done), shower, furnace, chimney, beautiful awning over the terrace in the back. I know you are mostly having really hot weather but it's pretty cool here and we need a little less rain. I can't believe how few tourists there are this year; it seems everybody is hurting with gas prices soaring and food so expensive in the supermarkets. The French have 5 months of vacation by law, so they tend to spend at least four weeks summering somewhere. I guess they are cutting back now. Hubs writes books about oil in the Middle East and he says gas prices are going to keep climbing. Too bad we don't have much in terms of public transportation back where we live in Virginia. If you don't drive you don't get where you're going, and it's really hard to car-pool, as my brother is finding out now that we works in the city and has to get there from the near-city.

Boy do I miss my daughter and little grandson. We get pictures every other day and it looks like he is growing so fast! I wish we lived nearer to them. I don't know how I'm going to manage so far away. You are lucky, Mary Lou, to be so close to your little ones.

So, lots of love to my dear sisters from way over here,

Anna 

Mary-Lou

Anna I am so grateful to be just 15 minutes down the road. They are at moms now in your neck of the woods. They have our truck for the trip, the babies and all their stuff takes up to much room for their small car.

We have a quad cab.....Talk about gas!

Mary-Lou

Anna if you forward me the email with baby pictures, I will post it for you....

Nancy-SanDiego

Hello Ladies.  Do you remember me?  I am so glad to finally find all of you (thank you Mary and Deb for the encouragement).  I am ashamed to have neglected you for so long.

 I would love to hear from all of you--please update me on your lives as we approach our 3d anniversary.  Can you believe it???

 I am doing very well.  I did not return to work (still on disability), but that leaves time for wateraerobics, traveling, grandson, crafts, classes, etc.  Yea, I still have to deal with congestive heart failure, neuropathy, fatigue, etc. but I have learned to honor my body and adjust to its needs (naps are a good thing).  I feel like I am managing my health rather than my ailments managing my life. 

You have been busy with new grandbabies (congrats Anna), traveling, bc events, etc.  Can you believe where we are today and how we felt three years ago when we first connected.  So many miracles since then.  I hope you are long on joy and have not had too many losses.

I look forward to hearing from you and hope I can join you at your reunion.  I will be traveling from November 4 throughout the month, but if you meet before or after that, count me in.

Love to my sisters,

Nancy

Anonymous

Yay, Nancy!!!!!!!!!!!!!!!!!!!!!!!!!!!!  
It's about time!  Ha ha!! 

Ok, how is everyone, I haven't really posted "stories" about my life on our little thread lately-why?  Because I don't have many stories to share at the  moment! 

It's the same old, same old.  I have been super busy going out to play in the sweltering heat with Daniel, taking him to therapy, and now we are doing constraint therapy.  We did this twice before, where we cast his unaffected arm so he has no choice but to use the affected side. 

His face when we put the cast on (it will be a week tomorrow) reminded me of the face I had when I woke up from my mastectomy....."I changed my MIND!!!!!!!!!!!!"  He cried, I cried, his therapist cried.  It broke my heart.  He kept saying, "I can't play with anything!!!"  and he'd wail.  I kept telling myself, "I'm a good mommy for doing this, I'm a good mommy for doing this!!!" 

I changed my mind, too! 

Fast forward to a week later, and he is doing AWESOME!  His left hand really does some wonderful stuff when it has no choice!  I'm proud of my kiddo! 

I've lost about 12 pounds of the 18 I had gained from the time my Dad died.  It's so weird, I'm not even trying this time around.  Usually, I try some weird fad or Jenny Craig.  I still don't like the way my clothes are fitting, and can't wait to lose the rest of my butt. 

Ok, I'd better go-Daniel is hopefully asleep, so I can clean up the house. 

Love to all! 
Love and prayers, Deb

Mary-Lou

Nancy~ So happy to see you found us again! I will post this last email from you and the pictures. You look amazing , you glow!

Hi Mary.  I think I have reconnected.  Sure hope so, I would love to hear from all of you.  Here is a recent pix-I sure look different than I did 3 years ago . . .The pix labeled Nancy and GD was taken one month before dx and is with my oldest granddaughter; the second labeled Frankie B was during chemo and is a group of HER2+ survivors (I'm second from left) and the last one was taken at Christmas with all my grandchildren.  Shows the physical changes of the last 3 years, but doesn't show the internal growth. 

Love,

Nancy

#1 Nancy & Granddaughter

# 2

#3 With grandchildren at Christmas

Nancy, I do see the internal growth shinning through...you look so much younger! The light hair and cut frames your face so well. I look forward to meeting you at "OUR" get together. You are an important part of these last 3 years, and will be for many years to come.

Welcome home Nancy.

Anonymous

Nancy,

That is totally not what I imagined you to look like!  Isn't that funny-even though I've seen pics of all of you now, I still have an image of you guys in my mind that I am willing to bet is nothing like you really are! 

Mary-Lou

Yes , like the skinny butt I am supposed to have ????? LM@O

Here is me up close and personal

See it even has my second chin hiding.... At least I have hair!

AnnaM

Welcome home, Nancy. It's good to have my other Her2+++ sister back (Margerie, of course). You get to look through the pages and see what we have been up to, but what about you? What are your favorite crafts? Where do you like to travel? Have you found anything that helps with the neuropathy? I love naps. I try to have one every day, but sometimes other things get in the way. Do you get the impression that you have less time now that you aren't working full time anymore?

Odalys, how are things going? Has the situation at work gotten any better? How is Stephen? What is he doing this summer?

Debbie, it must be hard to watch little Daniel go through such difficult therapy. How long will he have to wear the constraint on one arm? Is he proud of his progress?

I'm picturing Margerie surrounded by little crafters and having a wonderful time in Tahoe.

I am going to see my friends this afternoon. These are the ones who like me to bring little dog along. Sometimes we quilt together, sometimes we do watercolors. Today is a needle and thread kind of day. Little dog always tries to scratch the door down when we get there, because she is so very eager to get in to see her little dog counterpart, but once she gets inside she puts on an "I couldn't be bothered" attitude and lets him follow her everywhere she goes, ignoring him all the while and giving a nasty bark when he gets too close. Ah........

Have a great day, dear sisters. Again, welcome home, Nancy.

Love, Anna 

Odalys

Hello dear sisters.  Welcome back Nancy.  Wow, it's difficult getting to all the different threads these days.  I am exhausted by the time I get home and then I want to post but my brain is blank.  I can't believe we are going on our third year anniversay!  We've gone through so much and have lost a few good sisters along the way but for the most part we are now living our lifes again.  Some with more limitations than others but living nonetheless.  Life is good.

 Time is up, need to get ready for another day at the office...grrrrrrrr.  Have a great day everyone.  BBL to address everyone.

 Love and hugs,

Anonymous

Good to see you here, Odalys!  I've been thinking about you and work.  I hope it isn't making you too exhausted. 

Time for therapy for Daniel!  And, yes, dear Anna, he is SOOOOOOOOOOO  proud of the progress he is making.  What a little trooper I have.  Oh boy, misty eyes coming my way.....
Love and prayers, Deb

Nancy-SanDiego

Good morning sisters.  In my travels through the posts to catch up, I still have many important blanks; i.e. tell me about Daniel's therapy and why it is necessary.  I remember when Steve (my grandson) was Daniel's age.  He had turned into such a little boy, but his pudgy little hands were still baby hands and I loved them.  What parts of Daniel are still in transition.

 Odalys, work sounds horrible.  I know you said that you were taking care of it, but its so stressful and exhausting.  Any hope on the horizon for a better situation?  I still talk to my mom all the time, though she's been gone for four years.  I put a statue of a gardner outside my kitchen garden and that's mom.  I'm so glad she was spared my journey, though I would have loved to feel her hand in mine.  When aging relatives tell me stories about my mom, I wish I had encouraged her to tell me more about her life before I was born.  We are all so faceted, aren't we.

Anna, I love to think of you in France (not without some envy).  I used to dream of owning a B&B in the south of France, but now it just sounds exhausting.  That's OK as long as I can travel to France in my mind whenever I wish and in fact whenever the finances allow.  Last year I celebrated our 2nd bc anniversary by taking a cruise that included France, Italy, Spain, Portugal, Azzores, and back across the Atlantic.  This November, 3d anniversary will also be on a cruise that will include Morocco.  I travel alone and have lots of cooking classes, naps, and spa time.  Its a good time to reflect and celebrate our lives.

My friends in Idaho have regular "Stitch and Bitch" sessions and have welcomed me to their group.  I learned to do Swedish Weaving and have made 4 afgans.  Another fun project involves a glass block that is drilled and filled with small Christmas mini lights, then decorated to look like a wonderful present.  Great night light, bathroom light or entry light, under the Christmas tree, etc.  I volunteer with a wonderful group called Creative Coping Center.  The mission is to use creative arts to help cancer survivors, so we go to cancer groups, rad centers, etc. I first met them when they came to my bc group and we made bead necklaces--it was such fun.  We have a fabulous oregami tree at one rad center, where we encourage waiting patients and family members to make oregami birds for the tree.  It has hundreds.   I was always such a work focused person and its been such fun to explore my creative side.  So much less stress.  I also spend every Monday at the hospital visiting patients with active or history of cancer.  They range in age from 18 to 99 and some want to talk or have a little back rub and others some information.  Some have large families and support systems and others are alone.  I leave there every week humbled and filled with gratitude for the wonderful life I have.

Deb and Mary Lou--you both have incredible hair--thick and shiny and beautiful.  Deb, what did you picture in your mind that we would all look like?  Isn't it funny how we create a physical person based on words.  I love it.

Big day girls--meetings with pain specialist, oncologist, and cardiologist.  With gas prices, I try to lump several appointments so my drive to La Jolla is more cost effective.  How often are you all seeing your oncologists?  I see her every 6 months now, but she may put me on an annual schedule today.  Alternate mammos and MRI's every six months.  Wish I could say the same for my cardiologist, who is still my Siamese twin.  Anyway, have to hit the shower.

 Love to all,

Nancy

Anonymous

Hey Nancy! 

I imagined you to have thick black hair.  I don't know why......

You are very stately and elegant looking!  You take a much better picture than I do! 

About Daniel....

He has left hemiplegia cerebral palsy (due to my having toxemia and HELLP Syndrome).  He was born exactly 9 weeks early and had a grade IV bleed to his brain.  That is the "worst" one to get, and we were told to expect Daniel to be unable to walk, talk, or have full mental capacity. 

Well, don't tell me that my child "CAN'T" do something, because that just makes me more inclined to find ways that he can! 

He has been in physical, occupational, speech, developmental and music therapy since birth.  Well, we stopped developmental and music therapy when we moved here a year ago. 

We work on his left arm and leg.  He doesn't like to use either one, and is really the only child I have ever seen ride a tricycle without using both feet!!! 

Amazing to see him adapt to everything!  He is stubborn as heck, and will work his tail off so he can succeed.  I love both of these qualities so much, because I know that will make him very successful. 

He is doing constraint induced movement therapy right now, so his affected arm learns how to be more functional.  It is amazing-this is our third time doing it.  It's not easy for any of us, but so worth it. 

Yes, he has made the transition to "boy" rather than "baby boy."  He was dressed for church the other day in his little red Polo shirt, and had on blue dressy shorts and I was sure it was a mini-Daddy I was looking at. 

Then, just a moment ago, he says, "Mommy, I need to change Turtle right-quick (this is like his Woobie and Turtle never leaves his side, and is currently potty training for Daniel! ha!)." 

I was like, "RIGHT-QUICK???!!!!??!?!?!?!? " 

That is something Daddy says-that is so indicative of our different backgrounds.  He's a little bit country, I'm a litle bit rock and roll.  Now Daniel is talking like that! 

OT-the other day I made him "fun" animal shaped chicken nuggets.  He is like I am and hates meat, usually.  He takes a bite, and goes, "These don't taste bad or anything!" 

HAHA! 

Hope all the appointments went well today, Nancy! 
Love and prayers, Deb

Odalys

Hello dear sisters. I'm still smiling from seeing all the posts again.  The only one missing now is Margerie but I'm sure she will chime in soon. 

Nancy - you look great!  I love the pic with the grandchildren...priceless!  Love your quote about the picture "showing the physical changes but not the internal growth".  I haven't been taking too many pics of myself lately because I don't like how I look anymore.  But, from now on I'm going to remember your quote.  It does put things in perspective.  Thanks for the message.

Deb - my heart was aching as I read the latest therapy for Daniel.  It must be so hard for you guys to see him struggle but so rewarding to see him much improved.  I guess what you are doing is another form of tough love.  I am sure he will thank you one day.  Sending you a big hug for being such a good loving mom.   Have you guys decided on having any more babies?

Mary Lou- sorry you were feeling alone here.  I've been away because of all the drama at work.  I had a difficult time being upbeat in the middle of so much stress.  Your grand kids are adorable. 

Anna - Your grandson is so cute.  If it's okay with you I'd like to post the picture you emailed me of you and the baby so everyone can enjoy it. 

Margerie - I hope you are having fun in Tahoe.  Thanks for the invite but I won't be able to join you guys on the reunion.  I had already promised to go to Pinkstock this year.  I haven't even been able to get the time approved yet and it's in a couple of weeks. 

Well, the situation at work has gotten better but it's still very stressful.  The past few months have been hell.  First mom's passing, then my boss harassing me, then HR placed me on administrative leave (with pay) for two weeks but ended up being two months.  My boss kept making up things to get rid of me and ultimately I had to get an attorney to fight for my rights.  Goodness, things got really ugly.  Finally, I requested a transfer and had to fight to keep my currently salary.  It's been one thing after another.  Now, I have the attorney on retainer just to keep them from harrassment me...grrrrr.  I really wish I could just walk out but that is not an option right now.  Some days I get home completely exhausted.  Now you know why I don't post as often.  However, I think about you all the time. 

Wow, this is a long post.  It reminds me of the old days.  Stay in touch ladies.  I love opening the page and seein your posts and really miss you when you are not here.  Have a good night everyone.  Love and hugs,   

Margerie

Well, I hope things change right-quick  for you at work Odalys!  I think they owe you extra time off this year for another little get-together......... Bugger that this is happening still...

 And Deb you are one strong momma- Daniel is a lucky boy that you invest so much time and love for him.  He sounds like he is as tough and determined as his mom!

Great to hear from you Nancy!  I love all the photos and the Stitch and Bitch sounds great- I may have to start quilting and form one of my own

Anna- is the Tour de France passing anywhere near you?  My dear husband and I are STILL planning to spend some July in France to tag along the Tour.  It is so beautiful there.

We just got back fro Tahoe and this week has been crazy busy.  The little monsters (gotta love 'em) are going to a day camp next week so I can relax a little then. We were at the cabin until a few days ago and dear daughter was her usual chatty self. At one point she excused herself to go to the bathroom and came back and asked me if I enjoyed my "peacefulness" while she was gone.

I do appreciate every moment.  Life is very good right now.  Looking forward to our girls get-together!!  Nancy we are tentatively planning on meeting in Truckee (we have a vacation home there and you all are welcome to stay) the weekend of September 12-14.

Here are some pics I took recently of the kids.

Anonymous

Marg-your kids look beautiful!  Little monsters, maybe, but they are PRECIOUS! 

I can't wait for our get-together.  It's going to be fantastic!!!!!!!!!!!  

It's very good to see us on here-it's been a bit slow lately! 

Today, Daniel looked at me and said, "Mommy, before I didn't know I had this hand (pointing to his left hand), but now I know I have it!" 

I cried.  Then I called his therapist.  Then I called Daddy.  That was the best thing he could have said to me. 

Love and prayers,  Deb

Nancy-SanDiego

Margerie, your kids are gorgeous!!!  I'm sure they take a lot of energy, but it sounds like you creatively manage and still get an occasional nap.  I would absolutely love to join all of you in Truckee.  How "tentative" is tentative--are we making flight reservations yet?  (My favorite airline for low fares, Express Jet, will belly up on September 1 and fares just seem to keep climbing.)  What can we do or bring to make this easier for you?  I can cook and make my bed--does that help?

Odayls, what is the "pink" event that you are attending?  As an ol' HR Manager, I am really impressed with your tenacity.  I know how an organization can seriously mismanage harassment issues.  I hate that your situation is causing you so much grief and energy--work should be challenging and satisfying.  What is keeping you there?

Deb, you and Daniel are my heros.  His resiliency and courage will serve him well throughout his life.  He has amazing parents who continue to help him be "all he can be" instead of buying into the medical profession's limiting prognosis.  Statistics are not about individuals and Daniel and all of us are proof of that.  I just visited an aunt and cousin in Washington.  My cousin has CP with severe brain damage going on 50 years.  Like you, Aunt Nell, has helped Tammy have a life of joy and love.

Good news yesterday.  Don't have to see the oncologist for 6 months and the cardiologist for 2 months.  Only fly is that my Vitamin D is very low (16) and will all the recent info on bc survivability and low vitamin D, my oncologist has set me up with head of Endocrinology.  I already take mega doses of prescription D, so she said that injections are probably the answer once they rule out parathyroid disease/tumor.  Always something, isn't it.  But, I feel pretty good and I'm going to stick with that.

Mary Lou, I loved the picture and you look like the sunshine I imagined.  I just can't wait to see all of you!!!!!!!

Love,

Nancy

Odalys

Margerie - The boys are so handsome and she is so beautiful.  They are all so photogenic. I think you are going to have your hands full with the girl.  She is striking such a pose!  She looks like her mama.  How blessed you are to be able to spend time with them.  Even if at times they seem like monsters.

 Deb- how touching what Daniel said about his arm.  Oh, I just know this must be so difficult for you and your hubby.  How long is this therapy?  Please give him a kiss for me.  Tell him that his cyber Auntie from Miami is very proud of him.  BTW - what is he into these days?  Does he still like Bob the Builder?

Nancy- Good question...the salary and benefits are keeping me there.  It's a county hospital so we get exellent benefits and since they were afraid I would sue them, they kept my executive salary.  The job market in Miami is pretty much shot right now.  I'm looking but so far nothing. I wish I could tell them what to do with the job...you know what I mean?  But for now will just keep my mouth closed, keep the attorney on retainer, and hang in there until something else comes up.  I  really think the administration will change soon because they have practically run the hospital into the ground.  It's just a matter of time before it all hits the media and the board will probably be pressured to change the CEO.  I hope.  Pinkstock is an event fwhere a large group of  bc.org sisters their family and friends spend a weekend getting to know each other and having fun.  One of the ladies is hosting it in her land located in New York.  Everyone is welcome.  Here is the link if you want more information http://community.breastcancer.org/forum/34/topic/695321?page=22

Oh I'm so tired tonight.  I better get to bed "right-quick".    Good night dear sisters.   

Anonymous

Ah! 

I went to the desk to get an envelope and Daniel hollered after me, "Are you just going right-quick?" 

OMG.  Too funny what your monsters pick up from you!  

Anonymous

http://www.avellaninn.com/index.htm

Hey sisters! 
I know we've decided to meet up with Margerie, but I wanted to post my friends' Mom's bed and breakfast.  It really is beautiful, and she is an amazing cook (will cook you anything you want, whenever you want.  Yum....).  Maybe we can meet at this place next time!