2005 ROCK-TOBER CHEMO GIRLS

maryannecb

Amy, I am wiping your brow for you. I bet the onc tells you , you look great and there is NED. When he does go home put your feet up and eat some of lifes "good" chocolate.

Ravdeb, have you reviewed your bloods with the onc? If she worries you worry. Ah it is so easy when it is not my bloodwork I am obsessing over.Minor increases of most numbers do not usually mean much...

Debbie, would the trip be classed as a vacation or part of your cancer treatment? One ticket is much cheaper than 4 that is for sure. Maybe you will win the lotto...

As calm as I seem at times. BC is the first and last thing I think of each day. I am only just beginning to feel like I will survive.Like really feel it. Like let myself feel I might go on with my preBC life. Then I worry that I will get caught off guard and not be ready for it if it returns...confused? Me too.

Victoria, unless you develop stage 4 disease, you have a fair chance of cure here too. Lets wander down the lonterm survival path and regain our lives.

Fists up!

RoseMarie

Got back from my "Courage Night" with the Young Survival Coalition. I almost chickened out and felt dumb going alone but I went and am glad I did. We tried to preview the movie "Why I wore Lipstick..." but kept having technical problems. The movie comes on next Monday night at 8 or 9 EST on Lifetime - the part I saw was pretty good.
Tracy - what a wonderful idea! From what I gathered tonight the Young Survival Coalition here does the same thing. In fact they just got a grant from the Komen Foundation to fund the kits. I wonder if that's something you could look into for your area??
Debbie - sweet note!! Brought tears to my eyes too!
Ravdeb - thinking about you!!!
Amy - good luck tomorrow!!!
Love to all of you!!

Anonymous

Thanks, all, for the compliments.

Ravdeb, I still do have surprising pains in my lumpectomy area, but very rarely. Remember that we also had our lymph nodes dissected, and they had to go in very deep for that operation. It's just natural for our type of surgery to heal more slowly.

Will the tan marks ever go away? I thought mine did, but when I stopped using emu oil, they came back!

I have a dumb question. Does anyone else have arthritis that "travels", you know, sometimes it's in the shoulder, sometimes in the hip? I believe it's the kind that's not osteoarthritis. Right now mine's in my jaw area, so I feel like I have TMJ. I am waiting for it to go back to my elbow. I can eat without my elbow (or can I?!).

It's nice to be a little more relaxed and posting again. I'd like to tell you why I'm more relaxed, but I might jinx it. So y'all have to wait till December.

debbie444

Dr Ravdeb - you should know by now not to self diagnose! Did you have swamp fever and bilharzia??!!!
I dont know what the blood things you are talking about are - a case of ignorance is bliss i guess!
Its really foggy here this morning, Autumn has arrived i guess. Tonight we are going to PTA bingo ( whooppee) and then starting our Guy Fawkes. I love this time of year, Christmas is coming!!!!!!

ravdeb

Debbie..Keep it up! You always make me smile!

Which reminds me..where is Tadah???

And Graycie???

Brenda..the traveling pains are characteristic of rheumatoid arthritis. That's what I have. When it first came on I had terrible back pains. That moved on to my knees, elbows, jaw, wrists...it continues to travel. Just never know where it will go next! Hope it's not too bad. When it gets intolerable, see a rheumatoid specialist. Otherwise, tylenol can help and Advil if you are allowed to take that.(Dr. Ravdeb )

I'm off to see my family doctor about my blood test and see what he thinks. I'll keep you posted as to whether I have bilharzia..whatever THAT is!

ravdeb

And, where's my head??
Thanks to all about your aches and pains for such a long time. I will stop worrying about that one and mark it off my list!

Maryanne..can so relate to your confusion!

Victoria..YES! Just live each moment. That is so important. I need to stop obsessing!

Just...feel good everybody...PLEASE!

linny

Wildflowers, I am so with you on the menopause crash!!!! I can't remember anything, its driving me crazy. I have to make lists of everything, so I end up having pieces of paper and note pads all over the house - I can't leave the house without a list for groceries, errands, etc. or I will simply forget everything. I blame everything - chemo, tamoxifen, hot flashes, bad sleeping. My mother died of alzheimers, or senile dementia (in her early 70's) and I know this is totally different, its just so annoying.

Ravdeb and Maryanne, I too feel the confusion - I generally feel pretty good, but the fear seems to be growing rather than lessening. I have no scans, blood tests, etc. only 3 month checkups.

Linda

ravdeb

YES Linda. That's it! My fears are growing! They were basically non-existant until recently.

And yes...I think a lot of it has to do with lack of sleep, too.

Talked to my doctor today and he said the neutrophils are not too high and he goes by standard deviation so even though they were marked out of the range, they are still in the normal range. I said.."but" a lot and told him I was concerned anyway and he said he understood that but that it's not a problem like it was when I was on chemo and it's okay!

He has me on a low-fat diet and exercise to see if I can lower the LDL from 157 to 100. If not, he will give me meds to lower it. UGH. Just came back from the grocery with veggies :-)

Also walked on the beach. The tide must have been high the last couple of days because today there was this really nice smooth sand to walk on because the waves had come up on the beach and smoothed it all out. How nice! It was a lovely day at the beach and I'm so grateful that I can go there whenever I want!

So, Linda..not sure what to tell you to ease the fears. Just keep living and enjoying as much as you can!

TracyNY

I'm still here. Eavesdropping on y'all's conversations. I have nothing funny to say so I'm keeping quiet.

Some drama is going to jump off in a minute so don't worry, I'll be back with some crap just now.

ravdeb

Tadah...you don't have to say anything funny! Just join in. I miss you!

Is everything okay?

ake

my appt. with my onc. was great no problems. and even better...she said i don't have to see my radiation onc. anymore since he was so mean it's so weird...it's been 9 months since i finished chemo....wow!!!

Anonymous

Hi Girls!
I can definitely relate to the scar/surgery site aches and pains! Some days I have a burning sensation under my armpit, other days it's a tightness, and still others it's just plain old PAIN there! Under my armpit and around to my back is still numb and tingly - it's so frustrating! I have shooting pains frequently at the Mast scar site. And I still have sporadic shooting pains in the so-called "good" boob. How the heck are we ever going to be able to distinguish normal aches and pains from ones that are indicative of a new problem? Here I go again...I hate this disease!

Sunday, me, dh, Mom and niece walked another walkathon! This was the ACS - Strides against breast cancer. It was 5 miles and boy did I hurt later that day. A hot bath and lots of Ibuprofen helped! LOL The walk was great - 13,000 people. There was a guy there who had on a pink t-shirt that said: If you don't check 'em, I will! I thought that was really funny! The lakefront was incredible! It really looks like an ocean!






WHY AM I STILL SEEING BRENDA'S RED HAT AVATAR? I refreshed the screen but still the old one? Will one of you let me know what avatar of me you are seeing? This is weird.

ravdeb

Laura..I see your newest one, I think!

That cement truck is funny!

Interesting that we all have the same weird pains in our surgery areas. YUCK!

Amy..great, great news!!!

Victoria..thanks for the encouragement. My calcium is not that high..it's 10.15. I will not worry about it!

I honestly never imagined I'd be so nervous about numbers from a lab test. I kinda would like to return to my denial state I was in since diagnosis. I was happier then....

Laura..that's great that you can do all those walks.

ake

laura...i saw my onc. today and told her that i too have sharp shooting pains in my breast...she said it's most likely scar tissue that hardens sometimes and presses on a nerve. nothing to be concerned about wow, breast cancer can really be fun sometimes! ugh!

Anonymous

Amy -
That's why it's called the gift that keeps on giving! I'm happy your Onc. appt. went well. NO MORE PSYCHOTIC RAD DR. VISITS - YAY YOU! I'll still beat the heck out of him for you...LOL Hey, you are going to love your walk this weekend. It is so incredibly empowering. And, I bought the NutraNail with your photo! It's great! My nieces also bought it.

ravdeb -
Yeah, that cement truck is owned by Prairie Construction Com. They are a big donator and sponsor of the ACS event. They must have a personal link to bc. In my current avatar, do I have on a beige scoop neck shirt - with small ruffles around the neck? Thanks. I just want to make sure my baldi shot isn't still there. And now Brenda's new avatar is appearing. This is so weird.

debbie -
You are so funny...with the Derbyshire Pebbles! LOL

Laura

ravdeb

Laura..you are definitely not bald in this avatar and yes..beige scoop neck shirt.

Amy, that makes sense about the nerves and the pain.

marymelodi

Hi everyone!
I haven't written for several days. Thr big move of our program was tons of work and I was so, so busy. I worked 12 hours on Friday and 10 more on Saturday. Then I collapsed on Sunday. Yesterday was our first full day open for service to the patients. The inspector from the office of mental health was supposed to come and check it out and give us the OK on Friday, but she was coming from Buffalo and never got here. We sent digital pictures of the spaces and negotiated with the state to allow us to move and have the inspection yeterday, on Monday. It was a high anxiety day. There are many things still to be finished - my director's list has 60 or more items to be addressed. Things like adjusting the height of the counter in the break room so that our staff fridge can be put in place to getting different hinges on the doors so they do not present a suicide risk. They actually make a kind of hinge that cannot be used to hang on. My reception area is not finished . . . needs more cherry trim, the tempered glass encosure is not finished, and I'm missing a storage cupboard that is desperately needed. Still, it is beautiful and very nice for the patients. There a many fine features and we are proud . . . if completely exhausted. Last night I got a full night's sleep in more than a week.

So, that's what I've been up to and why I have not written much. I'm going to post another message that I began writing last week, saved on my desktop, and then never sent to you. You'll see I'm a little behind the flow of the messages here, but here goes.

Mary

marymelodi

To all my friends:
I want to respond to everyone and I have so many things I want to tell you.

I have to get physical therapy for my breast. You don’t want to know how many jokes my husband is making. There is swelling from the radiation (which they tell me is a common aftermath) and it makes my breast ache. They tell me the physical therapy will show me how to reduce the swelling. Right.

The radio station that interviewed me is doing a month-long promotion to raise awareness of breast cancer and to promote the cancer center here. The station is called Fickle Radio and so the promotion is “Fickled-Pink.” Last Friday (10/06/06) the did the first live broadcast from the hospital lobby, calling it a “bra-cast” because they were asking people to come by and give change for the cause by dropping it into the cups of the bra they had on display. The bra was specially made for them. It is pink satin, about six feet wide and about 4 feet high and the cups are the size of sofa cushions. It was so funny and yet so many people were coming around. I went to the lobby to see the radio personalities who interviewed me and it was fun to reconnect with them. They are selling pink attire to raise funds also – hats, fleece jackets, t-shirts, etc.

Gracie: in answer to your question – yes, I do work in a hospital. I work at Strong Memorial Hospital at the University of Rochester Medical Center. I am a secretary in a program in Child & Adolescent Psychiatry. The cancer center where I received treatment is also here in the medical center. It is called the Wilmot Cancer Center at the University of Rochester Medical Center. I’m thinking that there is a similar facility over by you at SUNY-Buffalo maybe?

I also need to get a colonoscopy. I think American doctors prescribe it to be on the safe side and because most insurance plans will pay for it. I’ve been told that like breast cancer, early detection is the key to easier treatment. Also, there has been a lot of publicity in recent years about this test because a famous TV personality, Katie Couric, was widowed very young when her husband died of colon cancer in his early 40s. She even had her colonoscopy live on TV one year. That was a little bizzare, but it really raised awareness. Yes, last year she also filmed her experience getting mammograms. I remember watching it. She has done a lot to try to persuade people to get the basic diagnostic tests.

So, that's as far as I got in my responses last week.

Mary

marymelodi

Debbie: in answer to you – I am the one who has a snowman collection. It began 4 years ago with a couple of decorations. Then my husband began getting me these cute mechanical, musical snow people that are marketed by Hallmark during the holidays and it has mushroomed. I didn’t even get out all of them last year (in the middle of chemo) but I believe I probably have 40 or 50 snowmen / women / children / animals of all sizes, shapes, etc. My favorites are a 24-inch tall motorized tree with a snowman face on top that wiggles and sings carols when it detects motion nearby, my 3 Hallmark snow people that also sing carols, and my snowman cookie jar. Actually, there’s not one that I don’t like. Many are table top decorations and I have many that hang on the Christmas tree. I just got a new catalog yesterday that had several outfits with snowman logos on clothes so this year I guess I’ll start wearing snowmen clothes, along with the jewelry I already have. I wrap my gifts in snowman paper and bags and I make really cute snowman cookies at the holiday time, also. My Christmas cards always have snowmen on them. Basically, if there is anything that has anything to do with snowmen in any form, I either have it or want it. It’s a sickness . . . . an addiction . . . I have no control and people keep giving them to me but I love them all.

Mary

marymelodi

Ravdeb:
Graycie lives near Buffalo, New York. Last Thursday night to Friday morning they got 24 inches of heavy, wet snow from a storm coming off Lake Erie. Because the leaves are still on the trees it pulled down thousands of trees, the power lines running through them, power poles, and made a big, big mess. That whole region was without power all weekend. They are having a massive clean-up. Schools were canceled for all of this week. Graycie is probably without power to get on the internet. The temps have been reasonable during the days but the nights are getting cold. I'm sure she and her family are doing okay. There are alot of services from the city, county, state, and Red Cross. I live only about 75 miles away and we got nothing. Not a flake of snow. The four counties on the west of us got hit hard but we missed everything. Today it is raining. Not the greatest, but it isn't snow.

Mary

marymelodi

Debbie:
Roger can come to visit anytime . . . but he has to bring you with him. We would love to have you and the kids for a visit. It's your aunt who lives in Rochester, right?

Mary

Anonymous

marymelodi -
I was wondering where you were! You have been one busy gal! Thanks for the update re: Graycie, I was worrying about her. I've had two colonoscopies to date, and it's really not that bad. I actually think the "cleansing" part is a good way to rid the ol' bod of the toxins. Really, it's not that bad. To the Dr.s and nurses...heck you're just another butt! LOL

ravdeb -
Thanks!

hola chica -
Just saying hi to you!

Laura

cathy987

Hello dear sisters.

Mary, I too was in the process of composing a response to most of you last week which I had neglected to save and when installing some new software was asked if I wanted to “save the changes made to document 1?” I too quickly checked no and poof there went a couple hours of chemo-old-woman brained work–poof!

I do think I’m the oldest–66 and some days I feel a lot older but I never think I’m that old.

So this will be an attempt to stop lurking again and connect.

Tracy, couldn’t get scheduled for colonthingy (Debbie’s name for it) on Monday. Our little town only schedules them on Thursday. Will be thinking about you on Sunday and Monday and I’ll be doing my thing next week too.

Love the idea of a get together. Scheduling for 18 will be hard but I vote for almost any time at Laura’s. I too have a seven passenger van that could be put into service.

In the meantime it’s my plan to try to visit anyone who is close to where I’ll be in the next few months. I pm’d Graycie about getting together with her and Mary when I go to Geneseo, NY in December. Linda, I’m visiting my daughter Ann in St. Paul next weekend, Any possibility there?

About aches and pains. I really relate to most of what you all have been sharing. I have a pre bc arthritic left knee (no cartilage left) which makes my knee and ankle hurt all the time. I do glucosamine 3td and Aleve 2td with Prilosec once a day. That makes it so I can almost get through the day. I really need knee surgery but do not have a month to take off.

Then the pains I’ve had under the arm, down the arm, in the mast site come and go. I mostly look on them as some of my feeling returning to areas that are mostly numb and have not worried much about them. But then I’m still doing the Herceptin every three weeks so have labs that are all normal and am seen by either my oncologist or an LNP which helps to alleviate any fears. (Tomorrow is my day--–hope they can find a vein.) Then only 4 to go.

My fingers and toes are still numb from the Taxol and my fingernails are a real mess. I looked for Amy’s Nutra Nail products at Target-–then went online to see where I might find it and will look at Kmart and Walgreens tomorrow.

I want to comment on what everyone’s been doing-–great pictures. Paula’s BC walk in Sidney, Laura another walk. You girls are really something. I would love to do a walk. No time and no knee. I’ll do my part for education on Thursday with another “share my story” at my local bank’s senior club. My pastor wants to start a local cancer support group and asked me if I would be interested in helping, said yes.

Rosemarie, Debbie great costumes for your chicklets.

Much, much more I would like to say–just know that you’re all important to me. Let’s see if I can be more frequent and less wordy. Ha! Not likely. Now to post this before I delete it.

cathy987

Where did I get "Linda" from. I meant Cindy/Chumfry.

Paula15089

Brenda - i still have the tan mark from rads!! Its still quite noticeable - this big reddish square. You can actually see the top corner when i wear low cut tops. Very annoying!
I was speaking to my PS the other day, and asked him if it is ever likely to go away. His answer? 'No. Your skin is forever damaded by rads.'. Geez, he is one optimistic fella...

ravdeb

HAPPY, HAPPY BIRTHDAY BRENDA!!!

May you have many, many, many more to come!

ravdeb

Paula,
My tan is just about gone...if not altogether gone. I think yours will disappear in time, too. It takes my suntan a long time to fade, also.

I'm getting sick of doctors who have less than optimistic or positive attitudes. Our neighbor who had lung cancer that has recurred, told me that his onc said he could go ahead and get a second opinion but if he thinks that the will hear something different then he is mistaken.

What the heck is that about? I told him he has a right to a second opinion. There are so many new treatments out there. He is going to see a top lung specialist and that's good. I hope she has some new chemo that will help him and a nice attitude that will cheer him up.

These doctors cannot say that nothing will work or a tan won't fade, etc. They do NOT know!

Mary.. thanks for the update and glad you are back here! Hope that Graycie is okay.
Sounds like you have a lot of work to get done in your new office but it also sounds like it's going to be great! Nice to have a good work area. Enjoy!

Cathy..good to see you posting

linny

I had a conversation with a friend who is a family doctor - I asked him why cancer doctors feel they have to be so pessimistic. He said that years ago doctors did not tell patients the truth about their prognosis or the details of their diseases. Now the medical profession has gone completely the other way - everything is told to the patient, whether they want to know or not. I think it is very extreme for some doctors to make a point of taking away a person's hope.

Mary, I live in Toronto, we have always found it interesting how much snow the Buffalo area gets (lake effect snow I think its called) - we actually get much less.

I have not had a colonoscopy and dont want to get one even though my family doctor has suggested it. I did not get a mammogram for 5 years (last one was at 50 and then at 55 diagnosed with bc) - I have been dealing with the guilt, and feel that I let my loved ones down by being negligent. I felt very well, and just ignored it, I was actually shocked when I realized how much time had passed since the last one.

Linda

sherryhaire

Happy Birthday Brenda--You deserve the BEST

debbie444

Heres a raised glass of something sparkly ( and not pink) to you Brenda!
I do hope Graycie is ok - perhaps we should send some huskies in after her!!
Mary - My aunt lives outside Pittsburgh in Export. Somewhere near Monroesville and Murraysville - my cousin lives in Mars! We find that just so funny ! Do you really have customers who want to hang off of door hinges? It must be a fun place that you work in.
My onc tells me everything too ( just in a very strong accent). I pick out the bits that really scare me and Roger listens to all of it so he can calm me down afterwards!
Catherine got discharged from Sheffield Childrens hospital yesterday. She has been going since she was 6 months old because she has some ligaments missing in her hand ( when she uses the brakes on her bike her thumb folds flat to her wrist) and she can dislocate her shoulder and arm at will ( not a pretty party trick). We have finally convinced them that seeing as she is on the netball team, can embroider and none of her teachers have ever known untill i told them, that it is not causing any problems - so we dont have to go back - HURRAH ! It was right next to my cancer hospital so wasnt pleasant going.

I was told that rads makes breast tissue 'woody' , and after rads finishes it gets a lot worse before it gets better - i have been putting the pains down to that as well as scarring.
Hows the Bilharzia diagnosis going??
Debbie