2005 ROCK-TOBER CHEMO GIRLS

Anonymous

How did I miss that???? Hedonism? Laura? LOL ...... Sounds like tda and Laura are our wild girls!! Woo - hoo!!

RoseMarie

Wow, a lot to catch up on! Mary Anne - great pictures!! I can't chat long - just wanted to pop in and get caught up!! Tda - you're always a hoot!! Good info Kelly - I'm with ya Graycie - I try to eat better now and try to make sure my family is eating more healthy but that's not always easy!!
I'd love to reply to all of you but I'm afraid to go back as I'm sure I'll lose what I wrote but you're all in my heart and on my mind!!!
Ravdeb - special prayers for you and your family!!!!!!!!

ake

graycie....eat dark chocolate...it satisfies the sweet tooth and has lots of antioxidants.

Graycie

Amy,
Well, that's good because that is part of my problem......I love dark chocolate....

sherryhaire

Ravdeb---Prayers to you and your family and friends please be safe when you go back home

Anonymous

Laura, please explain this Hedonism trip!

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Had my onc visit yesterday and since I am still at 50 for my MUGA, she is going to re-start my Herceptin treatments starting on the 31st of the month and then continue if my MUGA stays at 50.

Tumor markers show normal. So all is good right now.

TracyNY

My left hand and arm are swollen so tight that I feel like my skin will burst. I'm going to see my BS in a little while and hope that he won't tell me not to fly. I've been looking forward to my trip for too long.

Never a dull moment.

Graycie

Oh NO, that is terrible. Have you had any trouble with your arm before? I had swelling in my hand a couple times but it always went away when I rested it. They may suggest one of those compression sleeves (is that what they call it?) for flying.

Kelly, that's good about your muga. I never had one after chemo but then again I am not on treatments either. Another thing I am not happy about. Unfortunately, I am triple neg. What are these marker's I always hear about. That is with the blood right? My ONC never told me about them. Now that I think about it he doesn't tell me a bout much unless I ask.

Graycie

I wish you luck!

Graycie

maryannecb

Graycie although Her2 + women have Herceptin, it is still considered more aggressive than her 2 -.Herceptin has been shown to reduce mortality by 50%. So even with this drug some do not benefit. So count your blessings you are negative. Some onc don't put much stock in tumor markers. They are blood tests to check on possible recurrence.My onc intends to check mine every three months for the first year I think.

Kelly , great news you got today. I am glad you can receive Herceptin again. Negative tumor markers are reassuring too.

Ravdeb, will you stay longer in the States? The situation with Lebanon does not sound good at all. Are you near that border? When do you and Laura and Rosemarie meet? I am a little jealous.

Tda, do you have lymphedema? Get that arm checked out.

My house is so empty without the kids...I am trying to enjoy it yhough. Yesterday I even had an afternoon nap.Thirsday I see the lung specialist again. I think my lung is improving as I have less pain so that is good. My arm has become heavier and I have lost range of motion in the last few weeks. Did this happen to any of you after rads? I had pretty good function before so why now?

Fists up!

Paula15089

Girls do you realise we have the longest chemo thread on the forum...

Anonymous

HEY GIRLS -
Debbie, tda, terynsmom -
Okay - let me set the record straight here! LOL Yes, it was Hedonism - the resort where people walk around butt naked!

BUTT ...it was not like that when I met my dh back in 1988! Sure, there were those that were crude but most were prude - I was definately a prude! So there...does that explain it? I hope so. LOL LOL LOL

Laura

BTW - I did see quite a few couples doing "something" in the bushes late at night! Hmmmmmm...

ake

guess what, ladies? i'm officially entered into a clinical trial. i have decided to do the SOFT trial...it is looking at the most effective hormonal treatment for pre-menopausal women. i can be randomized to one of 3 groups:
-tamoxifen
-tamoxifen and ovarian suppression
-AI and ovarian suppression.

I've been struggling with whether to do it or not, but figured, what the hell. i am not having kids anytime soon, so i have nothing to loose and only a new better treatment to gain. it was a very hard decision to make, but i went with my gut (and my husband's gut) and i trust my onc. more than anything, so i'm in.

here's the link if anyone is interested:
http://www.cancer.gov/clinicaltrials (look for SOFT trial)

Laura...you crack me up

RoseMarie

Tda - good luck with your arm!!! My lymphedema therapist gave me a compression sleeve to use if I fly or if I feel my arm getting swollen. So far so good - I wish you all the best!!!!!!!
Amy - good luck to you too!!
Laura - LOL -
Kelly - happy to hear you'll be able to start back on Herceptin!!
Mary Anne - enjoy your free time!
I have one more full day in Tallahassee - these trips are way too short - then I drive back with the kids (my husband had to fly home on Sunday) Not to worry, we have lots DVD's!!!

Anonymous

OMG ..... for some reason, in just reading these last few posts from tda onwards, my heart is swelling with love for all you girls. Your posts to me, to each other, our concern, our fears and our laughter truly bring me such fulfillment and joy.

Thank you for being part of this terrible journey to hold my hand and hold my heart.

I love you all.

Kelly

ravdeb

Hi Ladies,
wow..took me a while to read all the posts. You ladies are so great!

I'm still in the States. Will be here til mid-August. My dh and youngest son returned to Israel. All is well. Other son is in the army and he's fine, too.

Weird to be here while the crisis goes on there but...

Don't plan to stay here longer than planned, but if the airport in Tel Aviv closes (no..they haven't said they would..this is just an IF) then I'll hang around and maybe take a trip somewhere else!!! What the heck!

tda... congrats on that masters!!! You go girl!!! How is that arm?

Robin... hope the bone scan goes well. I'm terribly achey...every joint hurts me. Feel like I'm 100 years old! I really do feel about 10 years older than I was before diagnosis. Bugs the heck out of me. I used to be so energetic and in such good shape. Now I can hardly get out of a chair. But I'm grateful that other than that, I feel well.

Kelly..that's neat that you may get to Bakersfield to see Ter. I'm totally jealous of that! I talk to Ter now and then and we are in touch by e-mail every day. I'd love to see her face to face. She's very fortunate to have so many kind and loving women from the boards visiting her. She loves it when the ladies visit. This I know.

Good luck Amy with the clinical study. You are a wonderfully brave woman and this can only help in learning more about how to treat breast cancer. I wish you the best.

Okay..Laura and Rosemarie..let's get our act together. I'll call one of you tomorrow...

Be well Ladies...

TracyNY

I had an ultrasound on my arm today, there is slight evidence of edema in it and no clots thank God, which was my surgeon's original concern.

He's going to take my port out tomorrow as it appears that it is slowing down my blood flow and contributing to the situation. He says he'll patch me up real good and I can leave for Jamaica on Saturday as planned.

When I get back it'll probably take me days to catch up with all the Rocktober activity. I'm so glad everyone is busy doing stuff to report and keep this thread active.

Laura, if you think I believe your story....! I like the idea of having a fellow wild woman in the group. I would take this thread off on a "what's the craziest thing you've ever done" tangent but a) I don't want to miss the responses and b) I'm going to Ocho Rios, I don't have time to wander down memory lane at the moment. But I do have some good ones and hopefully I'll have a few more when I get back!!

ake

ok, it's almost here. i'm getting nipples on friday. holy shit.

RoseMarie

Tda - glad to hear no clots and that you'll be able to go on your trip!! (I can't wait to have my port out!)Also can't wait to hear your stories!!! My craziest moments are all....well, not too crazy!! We'll wait till you come back to start up that conversation!
Amy - yay - can't wait to hear all about it!!!
Ok Ravdeb - will have my phone by my side all day tomorrow as I go through Alabama!! Can't wait to hear your voice!

Anonymous

Amy - pretty soon you'll be doing tassles!!

TracyNY

Quote:

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ok, it's almost here. i'm getting nipples on friday. holy shit.

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All hail Queen Amy of Nippledom. Her Royal Nipple-iciousness!!

Anonymous

Are we all one year survivors yet? I think we all are by now.

This has been a terrible road but we have travelled it well. We have become strong and determined. For me, I have gotten some baggage out of the way and made some changes that are for the better. I even spend better quality time with my daughter ... I concentrate on the time and truly focus on her when I am with her. I don't take my minutes for granted. I don't think I ever took life for granted as I know how fragile it is ... but every second counts.

Tda,
I hope you are feeling better!

Rosemarie and Ravdeb, I hope you two hook up and I wish you both safe traveling.

MaryAnne, hey, the kids aren't there, time to find your mojo!!

Graycie, triple neg is not bad .... I think once you make it past 5 years your chances decline dramatically that you will get a recurrance whereas positive receptors doesn't decline like that.

TracySeattle

Kelly! I am so glad you are going to visit Ter! Michelle visited her last weekend and I know she loves to meet her bc sisters. Please give her a BIG HUG from me! I talked to her yesterday, I try to call her at least once a week.

Ravdeb - you should stay longer, you and I could go to Bakersfield!!! :-) Just say the word, sweetie and I'm there! We could surprise Terrie!

Glad to see you are all here and doing well. Our community festival starts tonight so I have a big, long, weekend ahead, but it will be a lot of fun. You can follow the fun at www.aquafest.org go to the photo gallery, they should post pics throughout the weekend....

I love you all!

ravdeb

Rosemarie..sent you a pm!!! Don't have your phone number!!!!

ravdeb

Tracy..good luck this weekend!!

Amy... good luck tomorrow. wow!

Just spoke to LauraGTO. She sounds so good! Making the big plans for the get together!

tda..how is the arm?

Graycie..how are YOU doing???

marymelodi

Just want to add my "Good Luck" to Tracy for a wonderful vacation and to Amy for a successful "re-nipple-ing".

Don't know if you remember that my graying brown straight hair grew back in white and curly. Today a nurse here at work brought me a sample of a shampoo she uses called "Super Silver." She said my hair needs to be "brightened up." I never worried about anything like that before, but now, well, darn if I have white hair I want it to be the BEST white hair there is. So I'll try "Super Silver." Got to be super in some way, right?

maryannecb

Kelly I am one year from discovering my lump when it was yeeny. Took 2 more months for establishment to agree. Since they were slow learners I count my one year from now.I feel some good things have happened in the last year but overall it was scarey and scarry andI would not wish it anyone. I do feel positive and strong and am living a full life but...I feel like I am walking on the edge of a cliff, the view is beautiful and I am enjoying the hike but at any moment I might lose my footing and fall off. I hope over time I get back on a nice walk through the forest!

Amy, hope your nipple reconstruction goes well. I am getting more and more interested about reconstruction.

Kelly the ikds are gone until Aug 12 and you betcha I found my mojo.Actually I feel I am back to my old self "that way".And guess what? I started my period three days ago. So I got my wish to go back to premenopause. As I am not hormone positive I have no fear of this. I hated the fashes and the dryness and the poor sleep. If I had continued menoopausal I would have had to be medicated as I did feel miserable.

Glad to hear the troops are meeting. We'll need proof. Don't forget your cameras.

tda have a great trip.Hope your arm feels better soon.

Marymelodi, I am sure you look great with you natural color, I guess it won't hurt to improve it. My hairdresser wants to color my hair too. I am thinking about it. Now you will have super silver hair to match your silver smile.

Laura I can't imagine you in a nudist camp...you look so apple pie and ice cream.

I went to respirologist today. He asssured me that my lung problem is from the radiation. I was starting to get paranoid that it was the cancer back. He showed me the films and it is really just exactly where I was irradiated. I feel much better now. It may take a few more months for all the changes to stop. Then I will know what symptoms I am stuck with.

Gotta go make supper. See ya

Fists up!

ake

hi ladies. i'll give you all the scoop about the nips tomorrow when i get home.

i haven't hard my year anniversary yet...it's august 17th...but yesterday was my 6 month anniversary being out of chemo...how nuts is that???

TracyNY

Its hard to believe that chemo is not only in the past, but getting into the distant past. Six months already, it is nuts.

I got my port out yesterday, it was weird chatting to the surgeon while he was carving on my neck like the Christmas turkey!! He says that he thinks its lymphedema causing the swelling while the vascular doctor thinks the port was restricting the blood flow. We'll see.

ake

the nips are here. i'm very sore...mainly from a little revision to my stomach scar from my reconstruction in september. i'm very cranky, but home from the hospital. i have to wear these cups on my boob until sunday which make me look crazy, but hopefully the nipples will look okay underneath when they are unvieled. they also removed an area of fat necrosis that had scared us all (in may when i had it biopsied). the surgeon said it was most likely scar tissue that had been radiated and turned hard. it got sent to pathology and i'm going to pray that it's okay...i'll find out next week. i hate hate hate hate waiting.

i'm tired of surgery. i really am.

marymelodi

Amy:
I wish I could bring you a cool drink and a soft pillow to rest upon. Instead here's a "hug" - did ya get it?
Hope your healing is fast and that you'll feel "de-lipple-ish-ous" soon! (OK - I tried to combine delightful, nipple, and delicious - silly, huh?)
Get better soon!