2005 ROCK-TOBER CHEMO GIRLS

TracySeattle

Victoria!!! You are a writer too???? What a talented lady you are! I can't wait to read your book!

I also have pain where the Auxiliary Node disection was, it is tender, sore and red. My Dr. looked at it Friday and was not concerned. This morning on the bus coming to work, my unaffected breast started hurting really bad and itching. Of course, I immediately thought, "Oh No! Imflamatory BC!!!" Not sure what it was, but it went away.

Rosemarie - sorry I didn't get the addresses to you. When I got home last night the cable was out. No TV, No Computer. But it motivated me to finish up the CDs!!!

Laura, thank you so much for the nice words. You are all so encouraging and I depend on talking with you every day. Don't know what I would do without you!

I really think we should pick a date and a place and try to do a get together. If we plan it for next October (our 2nd anniversary!!!) we would have time to save money to get there! You could all come to Seattle and stay at my house, but a more central location might be more cost effective for everyone..... What do you think? Maybe we should start writing all of the TV shows (Ellen, the Today Show, etc.) and try to get in their October line up for next year!

I had better go do some work. Have a good day everyone!

ake

i agree with tracy. for our 2nd anniversary...we meet up. just think how beautiful and long our hair will be? i've never been to seattle

Anonymous

I would love to meet you all. I have the worst schedule of all with having to work all the time! I work on Saturdays where everyone else in the world is off on Saturday and Sunday!! Makes life difficult but at least I have a job where we can own a house and car and have food without having to live on credit cards.

I would be willing to volunteer my house as well ...... Southern California weather, swimming pool and hot tub!

------
Actually, with everyone talking about their tv and radio spots, I was on TV too. But it was pre-BC. I was on that show Love Connection when I was in my early 20's. I also did a show and the talk show people sent me out to go "pick up men" in a department store. That show was called "America". Then I did a commercial for a Toyota dealer.

Oprah and Ellen are really missing out on our group!

TracySeattle

Oh! Southern CA would be fun too! I think we should just pick an October weekend and a place and plan it! Kelly could you take a couple of days vacation?

ake

ok, that poster "body bliss" on all the forums is really pissing me off. every time there is some spammer on our boards, i feel so violated. grrrrr

TracyNY

I'm all for meeting next year too. I think it would be fun and very meaningful. Go to a resort or something.

By the way, my love nubs are healing wonderfully. They are cute and make me feel more womanly. Without nipples they were just for me, to fill out my clothes, with nipples they feel more like sexual organs. Strange, but true. I'm going to get the right one pierced.

My silicone nipples were donated to my best friends mother who had a lumpectomy yesterday. They were going to take the nipple but managed to save it. I guess she'll pass them along to someone in need.

I would recommend to all of you if your insurance will pay to get a session with the lymphedema therapist so that you can learn the massage techniques to keep it away. Radiation as well as node removal puts us at risk and it doesn't take much to kick it off.

Trust me, it is like a part time job. I'm used to it now and I cheat quite a bit but rolling those bandages and wrapping my arm is quite time consuming. The massage can be done in about 10 minutes or less and it is quite simple. Take your man to the session and let him learn how to do it to you, but you can do it alone.

In retrospect, mine started a while back with fullness in my armpit. I also have it in my trunk but I wrap that too. I've just taken a vacation while my nips are healing. The earlier you work on it, the easier it is to manage. Lymphedema is not the worst thing in the world but you can certainly do without it.

debbie444

I went to town shopping today and started looking at what i could buy for 'breastcancer month'. It started getting quite fun. I can buy
Pink Muffins and milkshake
A pink Fridge (!)
Lipstick etc
Hair straighteners ( excuse me - heard of chemo cut?)
Pink slippers
Pink footspa
The usual hats , t shirts etc
A dog lead ???
A pink glowing kettle ( which nearly won but was beaten into second place by a
Pink bun warmer!! ( Bun not bum tadah!)
It got me thinking - who can find the most obscure item??

Debbie

ravdeb

We do NOT have pink items here. I am encouraging my girlfriend who is opening a paint on pottery store to donate money in some way to the bc research being done in Israel.

Tracy..I was thinking today before I read your post that we should all meet together somewhere. That would definitely be cool and I will come to the States (though you could all come to MY house in Israel!!).

I will say that when I'm in the States, I always go to Chicago so Illinois would be a good place for ME, but I'm willing to fly anywhere if all of you are going to be there!

And I'm willing to stay in a hotel, resort...whatever. Willing..as though it would be a hard thing to tolerate!!!!

I saw my onc for my 4-month follow-up. She said she sees no evidence of disease. She said it in Hebrew and after I left I thought about it..she said NED!

She won't give me sleeping pills because she said the chemo still is having an effect on me. She said to walk every day. Need to see her in 4 months.

I walked into the center and the smell (not a bad smell..just the smell of the center) brought back the memories of going there for my chemo (somehow the rads has been removed from my mind and chemo stands out). After my meeting with my doctor, we (my dh and I) went to say hi to my chemo nurse. When we walked in, a young woman who I had made friends with who has lung cancer, saw us and called out to us. I had been thinking about her all day and was afraid to find out bad news about her. She has defied the doctors who gave her 3 months to live over a year ago. None of the treatments she was taking when I was on chemo were working for her. Now she is on Taxotere and the tumor has shrunk!

How wonderful is that? She's 32.

I told my dh how hard it was to be back at the center and he said that he saw the whole last year as a good experience and he likes the cancer center. I reminded him that he wasn't sick from chemo, he didn't suffer when they were trying to find a vein, etc...and frankly..he doesn't have the threat of dying from cancer in his mind all the time....

Still having a hard time even though the onc says I'm fine. For some reason, I just don't believe anything anymore....

ravdeb

I sent a pm to Melissa about that bodybliss stuff.

Victoria... that is really neat that you have incorporated your art with your writing. I once wrote a little children's book for a student of mine who was moving to the States and needed a crash course in English. He was in 3rd grade. I wrote a little book and illustrated it and gave it to him as a going away gift. I did it because it was fun and the mother told me (they returned to Israel) that she showed the book to his teacher in the States and she was very impressed

I started a book a long time ago...my biography. My mom told me I should write my memoirs. She told me this years ago and now that I have cancer, I think she's right. I should yank it out of my files on my computer and work on it. I don't think I got very far.

Anonymous

Everyone -
You can all come to CENTRALLY LOCATED ILLINOIS! I have 4 spare bedrooms. And there's some hotels in the area too (or we could get some rooms downtown). Hmmmmmm...we could roast marshmallows around a camp fire in my forest. My dh could barbecue his specialty: rib eye steaks and whip up his famous dessert...Carmelized bananas (in liquer) over vanilla ice cream. We could feed the Raccoons, Deer and Opossum. My SUV seats 7 and I could rent 2 more and we could caravan around town and check out some antique shops and restaurants! LOL OMG I am cracking myself up here...it's been a long day.

The weirdest thing happened...I was at the computer this afternoon for about a 3 hour stretch. Decided to get up and take a break, but when I stood up my foot was completely asleep and I collapsed! I put my hands out to break my fall and sprained my thumb...this was all quite freaky! My ankle is swollen and so is my thumb. Is this normal? Very weird.

AND...
I am working on something very special for us Rock-tober girls...it entails learning some new software...so I am trying desperately to learn it so I can make it. Gotta leave you hanging though...

Debbie -
The most obscure pink item...hmmmmm...the bakery here in town is selling pink bagels!

Laura

debbie444

Laura, it sounds fantastic. Does my apple tree and 2 japanese maples count as a forest? Hmmm think not!
Mark is quite willing to bring a tent but i would def need a bed.
No seriously, it would be great to all meet up . I had better stop buying shoes and start saving the pennies.
Debbie

maryannecb

Laura, I am in. We could do your walk with you! I am partial to a layed back gettogether. Of course the big city seems to be close. I checked out your location on mapquest. A year is enough time to organise ourselves in to action too.I am excited. Pink bagels...neat idea.

Ravdeb and Victoria you both must come so we can be in your memoirs! What a relief you are NED Ravdeb-believe!

Debbie I like a challenge, will be on pink alert for the rest of the month now. A pink fridge...LOL.

Tadah can you describe the massage or do you think you have to be shown? I have a puffiness under my arm, but it never changes so I think it is just post surgical swelling. I must admit I have totally ignored all the warnings about LE except avoiding venipunctures. I lift, carry,flew to Georgia with no sleeve,paddle,and wear underwire bra. Am I tmpting fate? I don't know I just do not want to take the blame. It seems to come on so randomly for most people, even years later. So I figure I mays as well use it til I can't...Is there truely hard evidence that all these things cause LE? Or is it just another way for us to feel guilty when something happens?

My dragon boat team is having its' closing supper tonight, gotta run.

Fists up!

TracySeattle

OK, Laura are you serious about your house? It sounds pretty central and espeically easy for Ravdeb.....

I think we need to pick the location and the weekend so that we can all put it on our calendars and start saving for it.

So far we have:

Illinois
New Mexico
Southern California
Seattle

Do you guys want to PM me with a vote for a place? Ideas?

Paula15089

Girls, whats going on? I am away for a while, and here you are planning a meeting next year??
well, may i vote for AUSTRALIA?! To give you some idea about the weather, today is 35C here... you wont be dissapointed!
Seriously, i would absolutely love to meet you all, but why oh why is Australia so damn far from everywhere...

ok, so I went to see my PS yesterday. At this stage I am seriously considering a prophylactic skin and nipple sparing mastectomy on my right side with silicon implant placed at the same time... this part is easy. But I am also not happy with the current state of my left boob.. It had an implant placed in prior to rads, so of course it is now all hard and rippled... So i asked my PS if he can somehow fix it. He said that the only way was to have skin/muscle flap (DIEP?) from my back. But i am not too keep on the idea of extra scars and longer recovery time. Not to mention a zillion of drains... I was kinda hoping he could just go in and clean up some of that capsular contraction tissue and replace the implant since the one i've got in is half saline hence tends to ripple... i DID NOT foresee this DIEP business... But PS says that he needs some non-radiated tissue to work with.

i will take a couple of months to think it over (since i dont want to do this in summer anyway).. also think i might go for a second opinion.

dcisions, decisions... i think i will be a frequent poster on a Reconstruction Board from now on!!
any ideas/insight is appreciated,

love you all!

debbie444

Oh paula, what a lot to think about. I honestly dont know what i would do ( ONly worked out what NED was yesterday!) I am sure someone will have some good ideas for you.
Victoria - where when are you coming too? That is soooo exciting!
Debbie

ake

paula...it's not diep if it's from the back. it's only diep when they take tissue from your tummy. that's what i had let me know if you have any questions! i love my results.

and it's official ladies...i'm tattooed it was a weird process and i admit, i got teary after the whole thing because it made me realize...oh, these aren't my real breasts, wow, i lost my breasts at 28! but i bounced back and now i'm just annoyed that i can't shower for 2 days.

chicago works for me i've never been there!

have a good friday

love,
amy

ravdeb

Oh wow..that would be so cool to meet at Laura's. I'm willing to go anywhere. I'll go to Australia!! Never been there and have always wanted to go there!

Okay..if we are getting serious here with this plan...I wouldn't be able to get there til after Oct. 4th. Otherwise...I'll be free! I love the Fall in Illinois!

We all must DO this!!! It would be sooooooooooo cool. I'd go to England, too! Haven't been to England in years!

New Mexico sounds nice :-) I also love terra cotta. Our stairs leading to the second floor are terra cotta. They told us it wouldn't look good with the ceramic floors but they are wrong! I love our stairs!

You can all come to Israel, too! Paula..I also feel very far away!

Okay...had my surgeon's appt. He said I'm fine. Nothing to do about the pain when I raise my arm on surgery side. He said it's nothing.

But, he wants me to have a mammogram and ultrasound in 4 months and to return to him. I had mammo and US a month ago. My onc yesterday was pretty clear about me not needing anything done before my next visit in 4 months. Interesting that he sees that differently.

I was stage 1. Any of you early staged women been asked to have mammo and US more than once a year?

I don't know if it's a good idea or not. On the one hand, early stages usually don't have much in the way of follow up besides physical exam with onc and yearly mammo. It kind of reassures me that i'm being watched carefully. On the other hand..do I need all those rays again from the mammo???

What do you think?

RoseMarie

Wow! I would love to visit all of your homes!! Laura is only about 3 hours from my house so I could drive to her house. Also, I have a mini van that also seats 7 so we may not need to rent any more vehicles. This is very exciting!!
re lymphedema - I spent the day at my son's school sorting frozen cookie dough for a fund raiser they had - last night my husband looked at my left arm and made a comment about looking like Popeye. Usually I have some soreness in my arm before I notice the swelling. Sure enough - so I'm wearing my sleeve today. I probably need to go back to my LE therapist - mine was so mild she didn't show me any wrapping or massaging techniques. She was more worried about my chording...hmmm
Ok - cable guy is here...gotta go...

TracySeattle

I think Illinois is the winner.... I would like to suggest Columbus Day weekend because that gives me an extra day off.

HEY!!!! OPRAH IS IN CHICAGO????? THINK WE COULD GET TICKETS????? We could all wear our T-Shirts and they would be so sorry that they didn't pick us for the show! LOL!

I am so glad it is Friday. I am kinda grumpy because I have to be up and out early both days this weekend. I really value my sleep..... Guess I will just make sure to nap or get to bed early!

marymelodi

Hi . . busy packing for the move today so only a few words. I could go anywhere in the USA. Illinois is close enough to Western NY for me to pick up Graycie in Buffalo and we could drive there in an easy day trip. I believe that would be the best thing for us (taking the liberty to speak for Graycie). My van seats 7 passengers so Laura you would not need to rent so many vehicles, once we got there. Perhaps I would get my husband to help with the driving, but once we reached you I would ditch him and leave him to go watch baseball games in Chicago.

Ravdeb: I was early stage II and my docs are having me get mammo every 6 months on both sides since I have a fibrous area on the left side that they are watching closely. My right side was clear, NED in July at the time of my first post-treatment exam. At that time they did not recommend ultrasound.

Paula and others with reconstruction worries: don't know what to say. . . sorry it is a hassle, wish it were all easier for you. I can understand both choices - to have recon and not to have it. Being older and not so much worried about my own appearance I might choose to avoid more surgery. But, saying that, I realize I was mightly glad not to lose my breast last year so how do I know for sure I would not have another made for me if possible. I do feel strongly that each woman has the right to control and chose for herself with no recriminations from anyone else whatever way she goes. And each woman deserves the very best care.

Oh, I've got to go finish getting ready for the move.
Mary

ravdeb

I just read that Oprah is into RED for AIDS and has a clothing thing where money goes to AIDS in Africa. I think it's a good thing but could explain why she didn't want US!

TracyNY

Quote:

---

Tadah can you describe the massage or do you think you have to be shown? I have a puffiness under my arm, but it never changes so I think it is just post surgical swelling. I must admit I have totally ignored all the warnings about LE except avoiding venipunctures. I lift, carry,flew to Georgia with no sleeve,paddle,and wear underwire bra. Am I tmpting fate? I don't know I just do not want to take the blame. It seems to come on so randomly for most people, even years later. So I figure I mays as well use it til I can't...Is there truely hard evidence that all these things cause LE? Or is it just another way for us to feel guilty when something happens?

---

The fact is you still have to live your life. I can take 10 trips up the stairs with light grocery bags or I can swoop them all up at once. Is there really a choice? We have to be realistic but once you are diagnosed you do as much as you can to keep the swelling from progressing without it dominating your whole life.

I could describe the techniques to you but you have to experience the touch and the patterns of movement so you can be effective. You also have to understand the physiology behind it a little bit.

You can buy the book "Lymphedema: A Breast Cancer Patients Guide to Prevention and Healing" by White and Burt (2nd edition) and it explains very simply things you can do before the massaging stage to help keep LE at bay.

Drink 8 - 10 glasses of water and breathe from your abdomen, it helps alot.

RoseMarie

Ok...I have lots of laundry to fold but this was more fun. I've been working on Kiersten's costume. Not an original idea but I thought was cute - she wants to be an I-Pod (The pattern was in the latest Family Fun magazine)

ravdeb

What is that made of RoseMarie?

I used to LOVE making costumes for my kids. But I do NOT sew. I stapled, glued, painted, and did weave string in and out like sewing to connect some material (can't remember the name of that brown itchy stuff) to make a native American Indian costume!

I made a big recycle box for newspapers, put my daughter and her friend inside of it, and we had drawn crossword puzzles on old sheets that they wore. I drew a kid on the box putting newspaper in a slot.

Took the thing to school early, girls sat inside it and their classmates had to guess who was in there!

So now the new thing is dressing like an Ipod!

Anonymous

Drats! I have my big RV show in October. I cannot travel then at all. Actually, my vacations are usually in March and July and my daughter if off school then. Sorry ladies!

Kirsten will be the cutest iPod out there!

TracyNY

Wow! That iPod costume is the bomb though!! You have skills Rosemarie! The only thing I can make is a mess!!

ravdeb

Amy..congrats on the colored tatoos!!!

I believe we need to rethink our date for getting together. Kelly can't make it! Let's get a time when everybody could come, if that's possible. I'm open to just about any time and I could come in March or July, as well. I'd prefer no winter months because 1) I have no winter clothes if we are going to be in Illinois and October is cold for me!) and 2) this is really the biggy..I do NOT want to get stuck in NJ in a storm as I land in the country!!!!

Mary...I was Stage 1. Not that that matters... But thanks for telling me that you, too, are getting the mammo twice a year. He's only having it done on the one side. I'm wondering if he is doing this because of the scar tissue. They wrote that it "appears" to be benign where the scar tissue is. Where was my head? I always ask WHY for everything! I think I was surprised and my mind was racing too quickly to get any words out!

Rosemarie..how's the IPOD coming???

Have a nice weekend everybody.

debbie444

An Ipod ! A bit more sophisticated than my fancy dress' that i make!
As for the get together, it may just be a cardboard cut out of me that arrives unless we win the lottery! Priced up visiting my aunt in PA yesterday, £2000 for the flights alone! Will have to stop eating, heating the house and running the car!

Here is Catherine in the mermaid costume i made for her sea themed guide camp.It had to be stitched by hand as was too silky for the machine!
Debbie

ravdeb

Debbie,

There will have to be a way to all meet..even if it's by video communication!

The picture is adorable! YOu are good. I made a Little Mermaid for my daughter years back but again..stapled it together with heavy paper and green netting! Yours is beautiful!!!!

TracySeattle

I am all up for changing the date we get together. I have some other committments in the summer, but can try to work around them.... Maybe Labor Day weekend? Or late August? Kelly - when does Teryn start school?