anyone starting chemo in Nov 2005

Anonymous

Anna,

Little Dog is just too sweet!!!!!  I wanna hug him! 

Your life seems like a dream to me-it must just be wonderful to wake up there! 

Love you all! 

Odalys

Anna that dogie is so cute. I think he knows he is the baby in your house. hehehehe 

Nancy-SanDiego

Good morning all.  Anna, I love your little dog, I can just imagine what a good friend he is to you. 

Lat, so good to hear from you, though it sounds like the effects of treatment are giving you a rough time.  My neuropathy is also horrible, just traded 900 neurontin for 300 Lyrica.  Doesn't do as much for the pain, but my mind is not so fuzzy.  Fatigue never ends, does it?  I have really learned to appreciate naps.

Today is the Relay for Life event.  I am leaving right now for the opening ceremonies and the Survivor Recognition lap.  I will walk for all of us.  Tonight when we have the Luminary Ceremony, I will light one for Kim in remembrance and another for all of us in recognition of our 3 year battle and victory.

 Love,

Nancy

Mary-Lou

Anna~ I love that baby too!

Nancy~ Thank you so much for the remembrance and honor lighting. I was going to do that for us this year but became overwhelmed with heat for the walk and had to go to the car.

I did eat at the survivors dinner which was a big spread.

The south knows how to cook!  But we ate in the AC and I think the change was just to much for my body to adjust. I tried to block the sun, but the pavement was absorbing the heat way to much .

You may have missed my shirt picture.

It was so hot that day I could hardly breathe.

Marg~ Missing you?????

Margerie

I am still here.  It is just crazy busy with the kids.  I barely get time to think

We just had 40 kids over for a football party/bbq.  Tomorrow we are having our young survivors group over for a BBQ.  I am sure they will be much better behaved- but you never know.  I got a lot of sun  I have another 2 weeks of madness and then I should have some more time to check in here.  Where are those lazy days of summer? LOL!

Who else is coming besides Nancy?? I hope you can make it also Deb and Mary Lou.  We will have to call the gals that don't make it.

Ciao Bellas,

Margerie

Anonymous

Marg-I'm coming, I just can't get around to searching for a great fare.  I don't have the patience, and yet I have the strong desire to save a penny or two!  Go figure!!  

Gotta go, but wanted to say hi!! 

Mary-Lou

Odalys

Hi sisters.  Just want to check in to let you know we are under a tropical storm watch.  Fay is headed towards the Tampa area and our weather will start to deteriorate tomorrow afternoon.  First day of school was canceled as they predict heavy winds and thunderstorms.  I've stocked up on our Hurricane supplies and now we just wait and see.  Fay will hit land as a category 1 Hurricane.  I hope it misses Fl all together but you just never know in which direction it will turn as history has taught us that hurricanes can also be very unpredictable.  Take care.   

Anonymous

Prayers are headed your way (much like an apparent storm?!).  Be safe, sister.   Love and prayers, Deb

Margerie

Hope you and yours are safe tomorrow Odalys!!!

AnnaM

Thinking of you, Odalys!

Nancy-SanDiego

Odalys, I just heard on the news that they are predicting it will hit as a Category 2 on Tuesday.  Hope you have all the hatches buttoned down.  I have never been in a hurricane, but it sounds really scary, and wet.  If you have an evacuation call, where do you go?  Do the kids treat it as we used to welcome snow days?

Margerie, where do you find the energy to arrange and host all of these activities.  I had to take to my bed just thinking about 40 little ones here. 

The Relay for Life was truly wonderful.  I worked the Survivor's tent from 7:30 a.m. to 1 p.m. and then returned from 7 p.m. to 10:30 p.m.  Following the Opening Cermeonies, there were a couple of Survivor events.  We were all on stage and introduced ourselves and how long we had been survivors.  (We ranged from 8 days to 28 years.)  We were then given a flowering plant and walked the The Survivor's lap.  As we walked, they played over the loud speaker our words of insight about the journey.  They were as varied as we all were.  All during the day, people could decorate luminaria with personal message to honor those in the battle or those who have passed away.  I decorated one for my Survivor Sisters and listed all your names, along with my sisters in my support group here.  I also did one for Kim and two other sisters who have lost the fight.  At 9 p.m. hundreds of these lined both sides of the track and were lit with candles.  We walked a silent lap and I doubt there were many dry eyes.  The messages glowed as you walked and were a constant reminder of how much this dreaded disease has effected all of us.  So many of the bags had been decorated by very young children and were heartbreaking in their simplicity and sadness.  (But, it should be noted that throughout the day, the children were playing in the ball cage, playing socker or catch or just running in joy.)  During the night, there were going to play two movies, have karaoke singing, etc.)  The goal was to raise $45K and I don't know yet how we did.  I'll send a picture as soon I get them loaded.  Next year, they have asked me to co-chair, so I would love to hear your ideas on how to honor Survivors.  Mary Lou, you mentioned a dinner--tell me more.

Anna, Margerie, are you hooked into HER Connection?  Its a web site created by Genentech and has great info.

Nancy-SanDiego

Odalys, I just heard on the news that they are predicting it will hit as a Category 2 on Tuesday.  Hope you have all the hatches buttoned down.  I have never been in a hurricane, but it sounds really scary, and wet.  If you have an evacuation call, where do you go?  Do the kids treat it as we used to welcome snow days?

Margerie, where do you find the energy to arrange and host all of these activities.  I had to take to my bed just thinking about 40 little ones here. 

The Relay for Life was truly wonderful.  I worked the Survivor's tent from 7:30 a.m. to 1 p.m. and then returned from 7 p.m. to 10:30 p.m.  Following the Opening Cermeonies, there were a couple of Survivor events.  We were all on stage and introduced ourselves and how long we had been survivors.  (We ranged from 8 days to 28 years.)  We were then given a flowering plant and walked the The Survivor's lap.  As we walked, they played over the loud speaker our words of insight about the journey.  They were as varied as we all were.  All during the day, people could decorate luminaria with personal message to honor those in the battle or those who have passed away.  I decorated one for my Survivor Sisters and listed all your names, along with my sisters in my support group here.  I also did one for Kim and two other sisters who have lost the fight.  At 9 p.m. hundreds of these lined both sides of the track and were lit with candles.  We walked a silent lap and I doubt there were many dry eyes.  The messages glowed as you walked and were a constant reminder of how much this dreaded disease has effected all of us.  So many of the bags had been decorated by very young children and were heartbreaking in their simplicity and sadness.  (But, it should be noted that throughout the day, the children were playing in the ball cage, playing socker or catch or just running in joy.)  During the night, there were going to play two movies, have karaoke singing, etc.)  The goal was to raise $45K and I don't know yet how we did.  I'll send a picture as soon I get them loaded.  Next year, they have asked me to co-chair, so I would love to hear your ideas on how to honor Survivors.  Mary Lou, you mentioned a dinner--tell me more.

Anna, Margerie, are you hooked into HER Connection?  Its a web site created by Genentech and has great info.

Odalys

Good evening from soggy South FL.  We've had an interesting day playing the wait-and-see game with Fay. First day of school was canceled.  Our hospital went into lock down at 11 am and the emergency medical team was called into duty.  The rest of us got sent home at 3 pm until further notice.  It seems the storm lost strength before making land fall in the Keys. We are expecting more thunderstorms over night but work will resume tomorrow morning. School is canceled until Wednesday morning. 

It's pouring with high winds but I'm glad it turned out to be less powerful than anticipated.  Fl really does not need a hurricane with this economy.

Have a good night. 

Mary-Lou

Thinking of you, my girlfriend is in Clearwater . This is where it is headed. It's 5am here.

Mary-Lou

OH I found a picture of another Sebastian. This is a grown version....

Odalys

Good evening comfy friends. Things are starting to get back to normal around here. Storm is gone but we are still dealing with some scatter showers and high winds. Thank God it wasn't a hurricane because it turned and went though the Keys faster than anticipated. That is what we fear about these storms. They can change direction quickly and destroy everything in it's path so we always prepare even when we are not sure if it will head our way. There is another one brewing in the ocean. I hope we can have at least a week to recuperate from Fay.

Sisters, I need to share something with you because I know you will understand. I've been considering not taking Femara and Zoladex anymore. I have very little quality of life. I'm so young and these darn meds are making my body feel so old. My head wants to do so much but my poor body can't keep up. I am too young to be feeling like this. I've been on them for two years now and just celebrated three years of being cancer free. Worse case scenario, the BC will return...I can deal with it. But, now I am aging my body daily in hopes it does not return. When the truth is there are no guarantees. Hell I was never sick a day in my life until BC. Maybe I'm discouraged, feeling self pity, or just in denial but heck quality of life is important. What do you think? I really appreciate your input.

Time for bed.

Mary-Lou

Odalys~ I stopped all my Femera months and months ago and I still feel the same. I believe something is wrong. In the back of my mind I'm thinking it could be lack of estrogen.

I posted a thread about fatigue, the feedback was really good.

Here is the link.

http://community.breastcancer.org/forum/67/topic/719657?page=1#post_1034902

AnnaM

Odalys, I am not taking Femara or any other treatment, and my body feels twenty years older than before BC. Most of my friends here in France are 10-15 years older than I am and they run me ragged. My joints ache. I truly believe its the super-accelerated menopause caused by the chemo. One day I had estrogen, the next day I didn't.

Mary-Lou

That is so true Anna, what time is it there? Here it is 2:13am....as you can see I can't sleep either. And with Michael's layoff it is worse.

Odalys

Thanks for the input sisters. I did some soul searching last night and had a good cry with Jose this morning about stopping the Femara and Zoladex.  He supports me in whatever decision I chose to make.  Now, I just need to do some research on the odds of recurrence or mets with my dx and then I will be ready to speak with my onc.  I have a little voice inside saying enough is enough.  I know my body and I think it's time to stop killing it slowly with all these meds.  The fact remains that there are no guarantees either way and quality of life is very important.  I'm only 45 and plan to be around for Steven and Jose for many years to come.  I'd hate to think the SE would prevent me from living a long healthy life.  At some point I have to say I've done all I can and turn it over to God. Thanks for the link MaryLou.  I will check it out tonight. 

Today was the first day of school for Steven.  We dropped hin off in his new classroom and met his homeroom teacher.   Wow, I can't believe he is a 5th grader already.  Time goes by really fast.  Seems like yesterday he was a colicky baby.  I used to drive him around the neighborhood just to calm him down.  The white noise of the car plus the movement would put him to sleep.  Those days were precious.

Time is up.  Work awaits.  Have a good day sisters.

Anonymous

Wow, I'm away for a day and look how busy it's been here! 

We took Daniel to Six Flags Great America yesterday.  I was so excited to go, and even more excited that Greg agreed. 

However......

Funny the discussion here is about feeling old and tired and achey.  I felt like I just don't have it in me to walk all over a giant theme park!  I was so TIRED!  And the food?!  ICK!  Greg was grumbling over the prices (which, I agree were outrageous to say the least), but I was just grossed out.   I couldn't believe that I was so disenchanted with a place I used to go to a few times a year EVERY year of my life until I was 19. 

I think part of it was that Greg and I coiuldn't go on any "fun" rides, and we spent the day in Wiggles Land and Cartoon Town.  We had to stuff ourselves inside tiny kid sized seats since Daniel was just below the minimum height requirement.  We felt fat. 

Well, at least Daniel had fun (although sometimes, he insists otherwise). 

Afterwards, we went to Rainforest Cafe, inside Gurnee Mills Mall, which I haven't been to in years.  I was suddenly rejuvinated!  I wanted SOOO badly to shop, but my two guys were tired. 

Love and prayers, Deb

Anonymous

PS-Odalys, I am glad you are safe, first of all.  Second, you seem to have already come to just the solution I would have-turn it over to the Lord. 

I'm on the opposite side of the spectrum, I am a triple negative, so I don't have anything extra to take.  Sure, that scares me, but I have to remind myself that if I am getting cancer again, I can't do much about that, can I?  It's not my will, but God's. 

You know we support you either way!  And, if you go off that stuff, then maybe you can come to our reunion? 

Nancy-SanDiego

Odalys, thank God you are spared this hurricane.  I thought what you wrote a couple of days ago was analygous to the fears we all have . . .

That is what we fear about these storms. They can change direction quickly and destroy everything in it's path so we always prepare even when we are not sure if it will head our way.

Treatment options are so personal.  We can gather lots of information, ask for opinions from our oncologists and survivor sisters, and discuss with friends and family.  We can learn the recurrence rates and weigh those against quality of life expectations.  However, at the end of the day its still your body and heart and you will make the best decision for you. 

Having said that, have you discussed the options with your oncologist?.  I am on Arimidex and I have consistently felt the fatigue and bone/joint pain that it involves and the osteoporosis that has been part of that drug for me.  I also have all the after effects of a body thrown into menopause and hate what that has done to my skin, bones, mojo, etc.  My onc said she could move me to Taxmoifen or one of the other Aromatace Inhibitors.  She said that many women find a difference in bone/joint pain.   Have you also considered some options like acupuncture, pain management, warm water therapy, etc.     Its good to have options, right.  But as Deb said, we are with you 100%.

 Mary Lou, my, hasn't Sebastian turned into a big boy!

Deb, I know exactly how you felt at the amusement park.  I was a real Disneyland fan and used to take Steve twice a year for our usual 10-12 hour marathon.  The last time we went, I lasted about 3 hours and was wiped out.  Worse, I didn't enjoy those 3 hours.  It was horrible and he really didn't understand, though he was a good sport about it.  Fortunately, he has other people who can take him and the two of us will do other things when we are together.

I sent you all a couple of PR proofs that Genentech will use to provide info on Herceptin.  What do you think?

 Have my meeting tonight, so better close.  Good night sisters.

Nancy

Mary-Lou

Love to you all, I will post tomorrow when I have the time to really sit and think.

Anonymous

Love you all!  Nancy, I'm really proud of you for being asked to chair the event next year!!!!!  

Mary-Lou

Nancy I'm also very proud of you!

Margerie

Love it Nancy- you are gorgeous!!

Odalys- I only have a minute, relly my computer is in the shop and I am at the library on a time limit....

but I HIGHLY recommend seeing a naturopathic doctor.  I knwo not everyone is the same, but I have been taking Arimidex for over 2 years now and some supplements and my side effects are very minimal.  He (my naturopath) is wonderful- addresses bone density, menopausal symptoms, safe supplements and food for er+ people like me.  I also had my joint pain go away.  Admittedly, it was not as severe as what you are reporting. But he has helped my insomnia too and my overall quality of life quite a bit.

Hugs to you and I hope Fay blows away and you get a littel more quality time with Steven.  He must be crying himself to sleep getting some days off school

Mary-Lou

I made this post for Nancy

Please stop by and comment

http://community.breastcancer.org/forum/45/topic/719846?page=1#idx_1

Hope the storm is moving away from you Odalys

Odalys

Howdy from soak and drenched So Fl. Does anyone need some rain? I'll blow some your way. Not complaining as this is way better than a Hurricane but I need sunshine and I am exhausted. Ok, enough about me. 

Marge - thanks for the info, something worth considering.  Glad to hear it's working for you.

Nancy - so cool what you are doing.  I know you will inspire many.

Sending y'all a big hug and best wishes for a good evening.

Love and hugs,