2005 ROCK-TOBER CHEMO GIRLS

marymelodi

Very busy here packing up the office where I work. The big move is on Friday afternoon. Difficult to still give treatment to the patients and yet pack everything up. People keep asking me . . . "Mary, where is this . . . and Mary, where is that?" Supplies for the new office got delivered too early today and so I have a 6 foot by 4 foot crate sitting off to the side of the lobby in front of me. Our new space will be lovely although today I saw 3 construction guys on the elevator and jokingly asked how it was going since I'm planning to be at work in the new office on Monday morning. They rolled their eyes and said we'd be extremely lucky to get it finished on time. Oh, joy!

I'm all in favor of exchanging addresses and Rosemarie feel free to give my address to anyone of our regular group . . . those on the list Kelly has been keeping up with our birthdays and now our locations. I brag about us all the time to everyone who might listen!!!

I have lots to tell you about the radio station "bra-cast" last week. Just imagine a pink bra 6 feet wide with cups the size of sofa cushions . . .

love to all,
Mary

maryannecb

Hi to All,

It was Canadian Thanksgiving this past weekend. We had the most beautiful three days, the sun was shining and the fall foliage is at its peak. I had to work all weekend however so enjoyed it in bits and pieces. I had three nights with poor sleep but last night got a full night in so feel much better today.

I am having a lot of muscle and joint pain too. I now take Arthrotec, an arthritis med with 24 hour relief, every day. If I miss a dose it is hard to keep on the move. I have a very busy life so will take it til I feel better. Also if I have too many poor sleeps I take Amitriptlline in a very small dose, it is not addictive and works well. I am blaming it on Herceptin but who knows?

I ahev no problem with address exchange with our current group. Last night I went back to the beginning of our posts. What a journey we are on. I read up until Christmas. We have all had our ups and downs, that is for sure. I was late joining, I stumbled on this place by pure accident. I was sitting at the computer one endless night and typed in support group, hoping to find something local. I think I lurked for a day then I was hhoked. I have found the experience enriching, educational and supportive. It is the one place I can go and tell it like it is. Much of the time we shield our family and friends from our fears, here anything goes. I have printed our new list with placenames and stuck it on the computer screen.

Paula, the Opera house is an amazing building! Loved your pics from the walk. Your hair is getting quite substantial. You look well and healthy.

Another interview for our group, Debbie be sure to post the picture.

Colonoscopy is not routinely done in Canada. Only for relatives with Colon cancer or people with symptoms. Although our health care is free there are many constraints on the system. Good luck to all having this done.

Am I the only one who hasn't planned reconstruction? Hope all goes well Sherry and you get your birthday wish.

I could picture you and your DH enjoying the countryside Cindy. You are right to enjoy each day and it is sweet of your husband to feel the same.

Kelly, neat story about looking up your old friend. I bet Teryn is excited about that. Hope your RV weekend goes well.

By Friday I will have worked 10 days in a row, so am already planning a really relaxing weekend at our cottage by the lake. My two oldest want to stay home so it will be extra peaceful..my youngest is so easy , he has no teenage angst as yet.

Mary maybe you won't have a place to work Monday and will get to stay home.

Hope your fears settle soon Amy. I went through that last month. Made sure I had Ct and bone scan and with normal results I have been able to relax and think positively again. Although these tests are not "recommended"
they gave me my piece of mind back so I think they were worth doing.


I wonder where Brenda is?

Fists up!

Anonymous

God I hate this!
I just finished reading through everyone's posts and got the feeling that for the most part - we are all doing well. So I feel bad about sharing this info, but I know you will all understand that you are the ones I can share this with. My older brother, Scott, is a perpetual bachelor! He has dated girls from as far away as Ireland (that he met in the Caribbean) to the girl next door. He has been dating a girl regularly, for a while now, here in Chicago. She finished treatment 11 months ago and was doing great (IDC - 2cm, NO NODE INVOLVEMENT, Lumpectomy along with chemo and rad.). She just recently found another lump and has started radiation, they're going to try to zap it away in addition to oral chemo (she had to stop Tamoxifen). She is really nice. She owns a flower/antique shop in one of the "hip" Chicago neighborhoods. Of all the girls my bro has dated, this one seems so special to him. He is a kinder, more gentle guy than ever. He told her they met because she needed her own personal healer. Huh? That is not typical of my bro! He's become a "softie" and I am so happy she has him and he has her. When she was first diagnosed, she was going through a divorce, and she had been on her husband's ins. policy. So she had no ins. at diagnosis time. This is incredible...her Dr. called the Komen Foundation and they paid for her treatment! That makes me feel great about the money us girls have collected and sent their way. It actually helped an individual woman! One more thing...my bro has been genetically bald for years, he told her he always wanted to date a "bald chick". LOL...she laughed too!

All I ask is that you keep her in your prayers.

Laura

Anonymous

Maryanne -
Glad to hear your Thanksgiving went well. Lots to give thanks for...I just wanted to let you know that I am not having reconstruction either. I'm not sure if any other Rocktober girls arent' either. I had an expander put in at time of Mast. - only to beg and plead to have it removed two weeks later at time of Node Dissection. I could not handle the pain. The stretching of my skin was unbearable. I am really thin on top. I'm okay - not great - but okay emotionally with the fact that I will never be able to have boobs again. I'm having a Prophylactic Mast in the next few months - so after that - I will have symmetry. Not in a postive way though. Are you okay - emotionally - without reconstruction?
Laura

maryannecb

I think I am pretty OK with no reconstruction, for the most part. The only time it really bothers me is when I am unclothed. It looks so strange to have nothing there. My incision healed well and all but it is a space where before I had something. I am only 34A so was never "gifted" that way, so I think I have less to miss but still...

What I am afraid of is with reconsruction it will still look strange when I am naked. Even the best reconstructions look a bit like a battlefield to me. So would I still have that same something is wrong feeling with a reconstruction??? Don't know.

I am happy with my prosthesis, can wear all my old bras and in clothing you would never know, the match is excellent. But to hear all the talk of cleavage and new nipples it does tempt me. Any of you with recon that have the feeling your new breast is not right?

I was unprepared for immediate recon at the time of diagnosis and personally I felt at the time it might delay treatment which I wanted to start ASAP. If all goes well I might look into prophy and reconstuction in a years time. I would have to do DIEP? as had rads. I don't have much belly fat so not even sure they could get a good flap.

Do you have a date for your prophy yet?Symmetry will have its advantages, you can choose larger prosthesis.LOL.

Fists up!

linny

Maryanne, I am not sure where you are, I am in Toronto, the thanksgiving weekend weather was truly magnificent - I was outside as much as possible. Laura, a friend recently diagnosed will also have a second mastectomy and ovary removal after she is finished all her treatments. Interestingly, she was told that even if she does not have the BRCA 1 or 2 gene, she probably still is a genetic cancer patient, since her mother and 2 first cousins had it. He said that not all the genes have been decoded.

Linda

TracySeattle

I'm moving to Canada - NO COLONOSCOPYS!!! ;-) LOL!

I do have addresses, Rosemarie I can send you the ones that you don't have but it will probably have to be tomorrow night as I am off to a meeting right now.

I still need Paula and Brenda's addresses, I think I have everyone elses.

Laura - I am SO GLAD to see the money that we raise for Komen is actually helping ladies that we know!

Mary - moving stinks, doesn't it?

Tonight is our 2nd support group meeting at Church. I hope some new people come!

I have been kinda down today--not usual for me, I think the changes coming down the road with my job are getting to me. I am feeling absolutely NO motiviation!

Talk to you all later!

Anonymous

You know what I just noticed?? I have everyone's nickname in there but I call myself my real name! LOL

I will also correct the word Australia!!!!!!!!!

Victoria has a list of addresses and so does Laura. I am ok with sharing our addresses with our regular group .. the ones on our list.

maryannecb

Laura, sounds like your bros GF has a local recurrence. That is not as serious as mets so maybe it won't be too bad for her. I loved his comment about wanting a bald GF. He sounds pretty special.

Tracy you have been so busy lately it is probably all starting to get to you. Do something just for you this weekend. Relax and smell the roses.

Fists up!

ake

rosemarie....i sent you my mailing address

i'm getting my nipples tattooed with color on Thursday. Isn't that the weirdest appt. ever?

Graycie

Tracy, Could you send me the addresses too when you send them to Rosemarie. I only have Laura, Amy, Rosemarie, Debbie, Maryanne. Victoria and Cathy so I need the rest. Getting excited, I can't wait for the CD. I wish I could think of something I could make everyone. Unfortunately I am not too good in that department. Laura, I wore your shirt today for my morning walk and I decided to finally ditch the wig, I know I am behind all of you but since it is BC awareness month I thought it would be fitting to do so.

Laura, I didn't realize you had a brother. He sounds like a special guy just like his sister. I hate to hear about reoccurrences but it sounds like they caught it early. I agree with Maryanne as bad as it is to have a reoccurrence it is better to be in the breast than met's. That is my biggest fear. Of course I am thinking the worse again because my back has been hurting. So Ravdeb I can relate to all your aches.

I also had a meltdown today. I was watching the new's and there was a man with lung cancer. The poor thing could hardly breathe let alone talk. I was crying my eye's out because I felt so bad for him and of course thinking this could be me. He was pleading for someone to help finish his home renovations he started because he didn't want to leave the mess for his wife and he couldn't afford to pay someone. You could tell this poor man was dying. A local contractor agreed to do it for free which I thought was wonderful. I couldn't do it of course but I wished I could have helped him.

Ravdeb, How are your home renovations coming along?

Sherry, good luck with your pre surgery visit tomorrow.

Paula, I like your pictures. The Opera house looks cool.

Amy, That is neat that they can tattoo the nipples so they look natural. I am sure they will look beautiful when they are done. I was thinking, you may be the youngest and I may be the oldest or near it anyway. of us Rocktober girls. Glad to hear you LOVE your new home.

I forgot to mention, I went for my ONC appt. yesterday and he wants to move up my mammogram. Should I be worried? I still have a lot of swelling but he said it might always be like that....I did ask him if he thinks there is something wrong and he said NO so I guess I shouldn't worry. It has been 6 months so he probably just wants to stay on schedule with the mammogram's. He also said if my blood work comes back OK he wants to have the port taken out. I told him I was superstitious about taking it out but he assured me it should be OK. So now I just have to hope the blood work comes back OK. Do we ever stop worrying?

Mary, Where do you work? In a hospital? Hopefully your new office will be beautiful when it is done and it will be well worth the move.

Victoria, Farrah has anal cancer? I heard them say intestinal, never heard of either. I didn't realize Jaclyn had BC. I knew about Kate. Did either one of them go through chemo? I don't remember them ever losing their hair.

Well, I have to go to bed now.......Hi, to anyone I missed.

Graycie

Anonymous

Laura, I, too, was thinking this was a local recurrance. Will say some prayers.

Paula, I love your photos! Congrats on your successful walk.

Woo hoo Graycie!!! I am so proud of you. We do get attached to our wigs don't we? I am going out this week for dinner and feel like putting it back on!

-------------
Have to take my dog in for surgery tomorrow. My dog, Sampson the Party Dog, went camping with me and Teryn. We went to my friends house ... she lives on a few acres. Her dog chewed up my sandal. Her other dog got into a fight with my dog and hurt his eye. She has dirt all around so dirt got in his eye.

Then Sampson got caught in her sprinkler valves and turned them on. He was stuck. I went to get him in pitch black and of course, got soaked. He was soaked and it didn't help his eye. He now has a bit up infected eye. I took him to the vet and it was 12 hours after and he couldn't believe that it got so bad so fast.

As we were driving to the vet, we saw that kids were coming out of school. Oops! Mommy thought it was a holiday, Columbus Day, and that Teryn had no school. Had to call in and say OOPS.

Took my car in for repairs/maintenance last week. Still don't have it back because they crashed it!!!! Then they wanted to give me a 10% discount off my service bill of $300. I laughed and said they were crazy. They crash my car, have it still 10 days later and want to give me a $30 discount. I told them I didn't take their rental because I had one so how much did that save?? Now the service advisor is snotty so I am going up the chain to the Chevrolet Zone Supervisor!

If I didn't have bad luck, I wouldn't have any.

debbie444

Why do i need a colonothingy?
Here too its just for relatives of someone who has had colon cancer.
Have to go - swimming with school. Bless him, Jamil has told his Grandma that when they go to Bangladesh she has to take him swimming like i do - she is 84 and disabled!
he says he swims like a fish - a fish that goes on the seabed!
DEbbie
P.s - i would like the list too.
PPs. am i dreaming or did somone say they had a snowman collection?
And where is Brenda?

ravdeb

Laura... your brother sounds so sweet and gentle. Seems unfair that his girlfriend has this stuff again but she is sure lucky to have him. And I guess he's lucky to have her... something about our bc brings out the best in others at times.

Graycie...Yahoooooooooooooo!!!! So glad you took the wig off! I know your hair is growing in slowly and you aren't used to short hair, but I bet you look beautiful!! And liberated!!! Woooohoooo!!!

I am NOT nor ever WAS attached to my wig. I hated it. I mean, it looked nice, was done well, was natural hair, was darn expensive...but I hated it! Just looked at a picture of myself in the wig and thought...boy was I UGLY!!

Kelly...OMG you had some bad luck there! How is your dog doing? And your car???? How could they do that?

maryanne..interesting that colonoscopy is not a regular routine thing...'specially for those of us 50 and over. We are also socialized medicine and I haven't gone to my family doctor about getting one yet (will do that next week I think) but now that you mention it...my dh goes in for regular physicals and tests on a half year basis and the doctor never told him to have this done and he 52. It is probably a problem to get here, too.

I had a problem getting my first mammogram. I was 45 and my girlfriend (same age) had just been diagnosed with bc and e-mailed us all to go and get mammograms. So, I went to get one but my gyne refused to send me for one. She said only women 50 or older or those with a history. I got an ultrasound instead. A couple of years later, I asked for mammogram again and begged her, telling her that my girlfriend had bc. She said okay because I had been suffering from ovarian cysts and decided it could be related. hmmmmmmmmm...mammo was clear. But of course I was diagnosed when I was 50.

Well, Graycie..I have been crying over just about anything..like in a movie when a mom or kid is sick and dying, I cry, and it doesn't have to be cancer.

I'm now understanding the fears that were predicted (my onc warned me) after all the treatments are over. I said that wouldn't happen to me. LOL.

Was in our clinic this morning with daughter cuz daughter needed blood tests, and my neighbor was there. We've been in touch. He finished all his chemo/rads at the end of the summer for non-smokers lung cancer. I asked him how he was doing. He said.."in general, I feel fine. In specifics...not so great". I don't know what that means. Some test must have come back not good. I'm so scared for him.

My close friend used to work with a woman in Chicago years back. This woman was diagnosed with non-smokers lung cancer 6 months ago. It had already spread to the liver. A couple of weeks ago he flew out to visit her and two nights ago she passed away.

Can't stand these stories. They are making me nuts.

debbie444

These stories seem everywhere, but, if we has a history of MS or cystic fibrosis i guess we would feel the same. It must be awful to hace an illness where the funding for research just isnt as forthcoming.
Mary - hope you are still sane after the move!
Debbie

ravdeb

Actually, Debbie, there is a lot of research coming out of Israel in a lot of areas. There isn't a lot of money but the information and the good doctors are here. I think that I got the most advanced form of treatment there is for my breast cancer and I'm guessing that my neighbor is getting good treatment,too. Otherwise I would have gone to the States since I'm an American citizen.

YOu are right though...stories tend to stick out more when we have something in common with them.

Still..seems like cancer is on the rise...

TracyNY

I don't want nobody digging in my booty hole. Colonoscopy my a**!!

TracyNY

Just kidding. That was my stream of consciousness working! If the doctor recommends it I'll just breathe deep and sit on one side for the rest of the week!

The last time the gyn went back there looking for polyps my eyes went dark and I saw one thousand points of light!! Whooooo!! I'm having a flashback!

TracySeattle

TaDah - you crack me up! I have heard that the actual colonoscopy is not bad--they give you good drugs....

Last night was our 2nd Support group meeting, two new members came. They are both Breast Cancer survivors--well one of them is just finishing chemo. So now we have 4 bc survivors, Pastor Kelley and Curt (the gentleman whose wife died of lunch cancer). It was a good meeting and I feel like we are doing a good thing.

This Saturday is the Komen Survivor's brunch in Seattle. I have 12 friends going and need to get there early to try to save a table so that we can all sit together. Can you believe it? 12 ladies that I have met this past year? You should see my Making Strides shirt. All of your names are on the back and I put "In Honor of My Rock-Tober Sisters". On the front are all of the other ladies I know who are survivors. There is no more room on the shirt to add names.....

Graycie - Good job ditching the wig!!! :-)

Kelly - How is your dog?

Well, I had better get to work..... Later!

Oh - I will try to send the addresses tonight!

TracySeattle

Oh my - I meant Lung Cancer..... See what I get for not proof reading my posts???

ravdeb

Okay Tracy...we know where YOUR head was...out to LUNCH!!!!!LOL

Tadah..you continue to find humor in all this craziness!!! You ROCK! BACK DOOR TESTING!!!!!

RoseMarie

ok - I sent out a bunch of pm's...but that was dumb since I didn't have everyone's address...still chemo brain, right?? (I also poured cream in a mug and filled an entirely different mug with coffee - couldn't figure out why my coffee was still black!!!) Tracy could you please send me the missing addresses. Thanks!!

Have a great one, ladies!!

cathy987

Tracy and Tadah

Don't have time to write much but had to tell you two that I'm ROFWL.

First the comment on your booty T.

and then the lunch cancer–I know not meant to be funny but I know that's what I have–too much lunch and it's showing up all over my body.

Later folks

ake

Ok, so I have been having this annoying pain...more like a muscle pull kind of a feeling...in the area where my axillary lymph nodes used to be....the area between your armpit and your breast. When I flex my pec muscles, it hurts. It's hard to get the full range of motion like putting my hands behind my head. Just feels like I've been lifting a hell of a lot of weights.

Is this lymphadema? There is no swelling that I can see, but maybe my breasts are hiding it. Every once in a while, I'm getting paranoid and thinking it's a recurrence or something. It's just tender and sore when I flex and just feels really tight. I haven't lifted any weights but I've definitely been carrying heavy things with the whole move.

Help! I'm a bit scared. I see my onc. next Tuesday, but seriously...does it sound like lymphadema?

Anonymous

OMG - You girls bring a smile to my face! Even when I'm freakin' out...you always come shining through, you are my shining stars. Thank you so much. I just feel so bad when anyone has to deal with this monster. My heart breaks. Thank you again.

maryanne -
Best to you with any or no reconstruction. It's truly an individual situation. I agree, it's hard to look in the mirror before bath or shower time or changing clothes. Most often...I have trained myself to just not look. My prophy...no specific date...I think January. You're right...we can be any size we want to be... LOL

Linny -
Thanks for the info. Please send my very best wishes to your friend. I hope the very best for her.

Tracy -
...our superbly, magnificently, inspirationally, motivational Tracy...not feeling motivated! Hang in there girl! Every time - throughout my career - when change took place - it always worked out for the better! You rock, you are a pillar, you are a Rock-tober Chemo girl!

Victoria -
I completely forgot...you too have not had reconstr. Where is my brain, has anyone seen my brain, if so please return my brain to me! I NV and love your adobe life! I told you before, I love the southwest, I love terra cotta anything, I love mosaics and tile - all the "stuff" you live amongst!

Graycie -
I am so happy you ditched that wig! Yay YOU! You rock! Actually, I have two brothers and a sister. My older brother is 47, I am 46, my sister is 45, and my little brother is 44! Amazing that my parents had us one right after the other. It was unfortunate that my Dad died from cancer at the age of 35! So tragic that my Mom was left with 4 children under the age of 11 and she was only 32! I don't know how she managed. But after my Dad died, she went to work full-time and at the same time went through Nursing School to have an income to provide for us. She kept us all in private Catholic schools. She is an amazing woman. I hope your back pains subside. Every pain now, is a thorn in our side! It's so hard to not take every ache seriously! Good luck with the blood work...port be gone!

ravdeb -
I am so sorry about your friend's friend! How tragic! This monster must be stopped! What the heck is going on here? Why is it everywhere? Why is it so indiscriminating! Why, why, why?

marymelodi -
Hang in there with the "move"! "Mary, where is this...Mary where is that..." It's called job security! LOL Okay...what about that huge pink bra? Tell us more...

TaDah -
OMG - You are so funny!

Brenda -
Where are you. Come in Brenda!

Rosemarie -
Thanks for organizing/gathering all the addresses! Glad you got my snail-mail!

Sherryhaire, Kelly, Cathy, Debbie444, Amy, Brenda, Jill -
Hey there, love ya!

Laura

Graycie

Amy, I think maybe you just over did with moving. Since there is no swelling I wouldn't think that it is lymphedema. Tadah would probably be the best one to answer that question. Ask your ONC on Tuesday if it is still bothering you. If it is muscles it will probably be better by then.

Anonymous

Amy, off and on, I have pain under my arm where the sentinal node was removed. It drives me crazy since it's not the visible scar but must be scar tissue under the skin where the node was. It's like it was hurting where the ovary was and that was way different than where the dr went in from the bikini area to take it out. So, no visible outside scar but inside you can feel the pain.

I think Graycie is right, but I'd ask about it.

It's all still hard for all of us Amy. Today when I went to Teryn's school to apologize for missing Monday on what we thought was a no school day, I was informed of the Parent Teacher meeting. I couldn't make the time but said Mondays were fine. She picked the time and then I realized I have treatment at that time. I started crying right there in the Kindergarten room! I just want to be the best mom and here I am still having to deal with this!!


It's going to be ok for all of us.......we need it to be.

ravdeb

Kelly... You ARE the best mom! You just are doing it all alone and it must sometimes get overwhelming. Teryn is sooooooooo very lucky to have such a strong, warm mom. But, you can't be super mom..with or without this beast. You are great!

Amy..I have that pain. I don't have full range of motion either and am seeing my surgeon tomorrow about that. I don't think it's anything serious...I also carry heavy things sometimes and often after that it hurts more. I see my onc today and will see what she says about it. I'm using my surgeon as a second opinion!

My neighbor who has lung cancer...he finished chemo and then rads this past July. He had had one lung removed. Now they found cancer in the second lung..already! He starts chemo and rads all over again. My dh told me this last night. I think I'm going to have a melt down. I know that lung cancer is not the same as breast cancer. But, I just can't deal with that. And only a few days earlier learned of the death of my friend's friend who had lung cancer.

Am going through a terrible time recently.

But, am seeing my onc today (wish it was MY onc but she's on maternity leave) and will discuss it all with her.

Be well, everybody!

linny

Amy, a friend who had dcis and sentinel node biopsy, was carrying heavy packages and developed a very mild lymphedema - it was treated with massage, and is gone, but she was told it is important not to carry heavy things with the affected arm.

Ravdeb, I am also going through a bad time. Two women I know have been recently diagnosed; I spoke to one of them a couple of times, including yesterday. She is starting chemo Oct. 20, no nodes, but aggressive bc, several tumours in the breast. The other woman is someone who started a group in Toronto for Jewish cancer survivors - she is a wonderful person - she has been diagnosed with a second primary 8 years after. Also, a woman I know of in the community is in the late stages of metastatic disease (12 year battle). I have often said I feel like I landed in the "twilight zone" and can't get out when the show is over!!!

My night time hot flashes are terrible (from tamoxifen) - anyone else having this problem.

Linda

scottishlass

Hi just a quick mail - would be happy to give you my address by PM but just do not know how to PM. Perhaps someone can tell me - will be away from the computer for about 2 1/2 weeks as in St Lucia. Will check up when I get back to see if I can PM someone with my address.

Hope all the aches and pains are at a minimum and you are all keeping fine. Must sign off and get the kids or the taxi will be here before I know it.
LOL Jill