Illinois ladies facing bc
Comments
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Hi everyone!
Jan...couldn't PM you back, kept getting a warning or something from the computer but I couldn't read it as it was in Russian, I think. But I will try your suggestions.
Pam....how did it go?
Laura...did you get your car back yet?
Nicki...glad to see you are around and kicking.
Susan...congrats on the new granddaughter...would love to see the 4-generation picture.
My back/leg/heel pain persists, tho not as bad. Getting everything done around the house, just very slooooooowly. I am guessing that surgery will be necessary but if it gets rid of the pain then I am ready.
Just a hair ?....I only have about 3/4" of hair but I am tired of looking at all the gray (or is it grey?)...did any of you just go ahead and color it? I wear a wig everwhere, but it's me that is hating all that salt and pepper.
Well....time to get my butt going...have a great day!
I am going to try and stick in a picture of my dh and me but I have a feeling that it won't work!0 -
OK...pic didn't work so I will try this...where is a little kid when I need one???!!!???
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OK...pic too big...I will work on this!
Sorry if it took too long to download...you'd think a college degree would help out here!!!0 -
Hi Girls -
Finally...here's the linkie for Team: NoSurrender...at the top of the page there's a bar that says Register For This Event (I still have to register my dh, Mom and nieces!):
http://www.active.com/donate/chicagorftc2007/nosurrender
Hope you ALL can join us! It's truly empowering and it's a great way for the kids and men in your life to feel "like they're doing something for you"!0 -
Hi gals! Wow there were lots of posts since I've last logged on. This is like a security blanket. It is so good to connect here again.
Pam...first of all....HUGS! Michele and Wendy are right. MRI's show everything and only a portion of the things that appear in them are actually harmful. My radiologist warned me that when I go in December I may get called back in for an ultrasound. In my case, there may be false results from areas of tissue that were damaged from radiation. Keloid scar tissue also causes an alarm so I am hoping beyond hope that this is what they find in your ultrasound. In the meantime, I'm thinking and praying for you! Hang in there. I can't imagine how nerve-wracking this would be.
Michele, I'm so glad that you had a good time in Iowa and that the you held your own on those Iowa boats. That makes it much more fun! I came into Chicago on Friday to the Museum of Science and Industry with a friend who'd won some tickets to the Crime Scene Investigation by answering a question right on the radio. We had lots of fun at the museum and topped it off with a quick stop at the Empress on our way home. I won $175 on a nickel machine on the lowest floor. We came home giggling!!!
Saturday we went to the Illinois State Fair and it was wonderful. I wish I would have thought to tell Kate to take her guest there. The ag exhibits were fantastic, but there is so much more there to see and do besides agriculture. It was a hot, sticky day but we sure had a good time. I think we're heading back on Wednesday. They have harness races that day and it's paramutual wagering. )By now I bet you ladies are beginning to think that I have a problem..........!!!!!)
I'm stopping and posting this before I finish. This morning I tried to post and wrote too much or took too much time and it wouldn't accept my post when I was done. These boards have been acting strangely lately and I'm not taking any more chances.
Rita0 -
Hope you had a great weekend...I've been busy with my little niece Shelby Laura. But I managed to drive over to one of the designated cheering stations and high-fived some of the walkers in the Komen 3-Day (60 mile walk) as they passed the 17 mile mark in Mt. Prospect yesterday. It was great! My cousin was part of a team and they wore t-shirts with my photo on them (I got really choked up seeing them). They are SO dedicated..it was SO HOT, HOT, HOT...almost 95 deg. - but they were SO upbeat and positive...a true inspiration! I really appreciate their dedication! ...it was quite touching...
And also yesterday, I visited Nicki and her dh...they were at Nicki's SIL's house not far from me. WOW - what a house...it's my dream...a log cabin! But it was huge - with a gorgeous pool...Nicki was looking pretty hot in her swimsuit! OM - LOL It was great seeing them!
Rita -
How are you feeling...
Wendy -
Awwwww, nice photo! I got my hair dyed as soon as I had about a half of an inch, if not less. I couldn't stand the color, it was the same color as pencil lead. LOL And - NO - we didn't get the Goat back yet. Arghhhhhhhhhhhhhhh...it's been in the shop more this summer than it's been in our garage! I'm really getting impatient...I wanted to race you...OMG LOL!~ - just kidding! They had to send the throttle body to CA to be re-designed! I told dh - hey...just put the old one back in and call it a day! LOL With or without the Goat if you do go to Dockers...let me know. btw - I have done this for some of the girls here...you can e-mail me your phote, and I can size it to the 80x80 max pixels and then send it back to you all ready to be used for your avatar. But you've probably figured it out by now!
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Have a nice week!0 -
Hi Rita -
We were posting at the same time!0 -
And I'm back!!!! Larua, I love your reward ideas! Hmmmm.....a BMW with a Cubs logo on the hood. Now that is certainly enticing!!!! I also loved your rock story! You are so funny!
Nancy, Hang in there. JanClare is right! All the uncertainty and decisions that we have to make at the first take a big toll on our emotions and nerves. It will get better when you have your plan in effect. The surgery and treatments are doable.........nothing we'd stand in line to get to, but doable, and we will be here to listen and help when we can. Hey, do you have one of those fancy sewing machines that does the embroidery for you?
I still can't believe that so many of you gals haven't had Maid Rites. They are located throughout central and southern Illinois so I just assumed that they were up around the Chicago area, too. Mazy described them so very well! If you ever get a chance to have one, give them a try! I am so excited because the Maid Rite is coming to Normal, which is only about 10 minutes away from me.
Wendy, I love the pic of you and your husband. You are just a doll! I'm like you when it comes to technology. I had hopes that my son could show me how to insert a photo directly into a post when he was here in July but we were so busy that we never got to it. One of these days.....
Well tomorrow is the day that I start the Arimidex. Keep your fingers crossed for me. I so hope that I can withstand the side effects of this drug as it has helped so many others ward off this beast. I'll keep you updated. Tomorrow is also the day that I start my exercise program again and try to eat a healthier diet. It's supposed to be so hot that I think I'll hit the pavement as soon as I get up. I'm taking your suggestion about taking the Arimidex mid morning and see how that works first.
Well ladies, I hope all of you stayed cool this weekend and that everyone has a great week ahead of them.
Rita0 -
Hello All,
Haven't been around for a while. Seems like I pos ted and then dropped off the face of the earth! But I'm alive and well and doing fine.
I moved at the end of June and now I'm having an open house. For anyone in the Oak Park area on Saturday, August 18, 4- 7, my address is 1104 S. Easat Ave, Oak Park, 60304. Phone: 708-386-1015. If you can, please stop by. Not only is this an open house, but Aug 18 is my 7 year anniversary of being cancer free and living with my main man, NED. I really hope some of you can stop by!!!
Blessings and hugs to you and yours,
Cherryl0 -
Dear Cherryl:
So happy for you. I move rather nervously towards my one year anniversary (August 30) and I sure hope it is cancer-free.
Ladies, I went to my grade school reunion last night. I am 59 and was my grade school,l962 reunion. The statistic that shocks me is that we had 15 ladies at the party and FOUR of those 15 are dealing with breast cancer. One lady was not in attendance as she had died of BC. How many more have the desease and are not talking about it, and how many more have it and were not in attendance? This 1 in 8(women who get BC) statistic is optimistic if you look at at the numbers of ladies with BC who were at the party last night. They came from all parts of Illinois and so it is not clustered here in Northbrook, Illinois.
I am so grateful to all who are walking for BC and forming teams. Money is being withdrawn from BC research and we need to do our own fundraising to "keep abreast" (forgive the pun) of this disease.
Thank you,
Susan0 -
Susan,
We're here for you as you rapidly approach your one year mark. Along with the nervous anticipation we'll celebrate you and your first year out, too! Now that my treatments are done and I start the Arimidex today, I'm a little apprehensive, too. In a couple of months I'll be having the first year tests,too and just the thought of it scares me. We'll get through it, though. Like you, I appreciate all those who walk, golf, run, or contribute in some way to the breast cancer cause. I think we will see continuous success in this struggle to eradicate the disease and provide better treatments for those it afflicts. Like you, I am questioning the 1 in 8 ratio. I think it is a much higher percentage of women who are faced with this. Perhaps the stats are outdated.
In the meantime, hang in there. You are an inspiration to this site and so helpful!
JanClare and Laura....you would be proud of me. I started my walking routine this morning and have already walked two miles.....a leisurely stroll for you pros but a good distance for somebody who's been away from the routine for awhile. By next week I will be up to 3 miles a day.
Hope everybody has a great day!
Rita0 -
Morning girls....
HaHa Susan...keeping "abreast" of the disease...I love that one!
Conrats Rita on your walking...I managed to get my back to exercise yesterday and felt much better. Well, at least until I sat down in the car. Car seat must hit that nerve. The arimidex still causing me nausea, but not enuf to stop so I just sip on a 7-up or something like that...this se is OK. I don't like the se's of bc AT ALL.
Girls...all your walking for the cure is truly inspirational, but I am not much of a walker but I wanted to do something to help so....one of my onc nurses took a timeshare job as the breast health navigator here at Delnor and I am going to volunteer for her, to talk to the just-dx's girls, help them with decisions, appts., show them my scar, my little bald head (well, not so bald!), tell them my experience with chemo/rads, flutter my beautiful long eyelashes at them...I know this surely would have helped me. Oh, and nag at everyone I know (and people I don't know) to get those mamm's..wait until October...people will start running away from me!
Susan...congrats on the one year! Cheryl...7 years! YAY!!!!
Oh Rita....it only took me 6 months to realize that all I had to do to insert a pic in a post was to go to reply and NOT "quick reply". I am soooo dumb. But I still can't do the resizing so I will send my pic off to Laura as she offered to do it for me. She's such a cutie and a sweetheart, isn't she!
Well girls...I am off to dye my minimohawk NiceNEasy #116A..I just can't stand staring at all this gray/blackish/whitish stuff on my head.
All you girls have a truly wonderful day...rain has passed thru. Another day I don't have to drag out the hose! But high around 93 and humid...yech! But better than -14!!!0 -
Congrats Cherryl on your 7 year anniversary. I sure wish I was closer so I could pop in and help you celebrate! It is good to have you back on the thread! We'll look for many more posts from you. You are a real inspiration!
Wendy, you will be a wonderful volunteer for the just dx'ed girls and I bet you will make many friendly bonds with these gals, too. When I was first diagnosed, a complete stranger who had made the bc journey contacted me and got me headed in the right direction. I call her my guardian angel and there's nothing in the world that I wouldn't do for her. She met me (sight unseen) at Barnes and Noble one evening, armed with info and a big smile and made such a difference. I think it's great that you're going to do this!
It's raining in Bloomington! YEAH! We needed it so badly! I didn't get my walk in today but maybe it will be clear this evening and I can get out there and walk when it cools off.
Laura, I took a quick glance at the walk site. If I want to bring a friend, do I have to register each of us separately? From what you've said about your husband waiting around for you last year, I'm assuming that it's O.K. to bring a male friend with me. We thought we'd come up the night before and enjoy some of the Chicago area activities so we didn't have to get up so early.
Hope everybody has a good day!
Rita0 -
Here is the update. They did the ultrasound, the radiologist thinks the MRI radiologist was seeing 3 cysts that are there. He wanted to talk to him and confirm then talk to my surgeon for a plan of action. They said it would be 3 options: 1. Do nothing and get another MRI in a few months 2. Aspirate the cysts and do another MRI 3. Do an MRI guided biopsy.
I have an appt this Wed with my BC surgeon, hopefully they will have talked by then but I am not holding my breath. No one person in the medical group seems to drive conversations well so I will have to stand there and demand he make some calls I assume.
I called the hospital today to get the reports and they can't fax them and it is 1 hr away from my house or work to there so I have to wait for snail mail. I am sure the surgeon will have a few ideas anyway for tomorrow.
I am deading option 3 if that is their choice. The last biopsy hurt as much as the lumpectomy. Ugh, the price we women have to pay for just having boobs.0 -
Dear Pam:
Thanks for the update. You and I are close in terms of dx date, yet I am older and my original dx was not as favorable as your own. I wish you well. I know that all these machines and scans are good at picking things up early, yet they surely wrack havoc on our nerevs. I sometimes wonder if we would live easier lives without them. I know that is perhaps a crazy notion. Your experience has prepared me for my own mri experience. Nothing is really ever certain, is it? Take care.
Wendy: I vaguely recall that nausea of arimidex but it just slipped away. I am not the most patient person so it could not have lasted that long. I do have se, I admit that. Like you, I am willing to experience them as the BC scares me so much.
Rita, I am planning on signing up my husband and my daughter for the walk as we always do them together. If my granddaughter ever settles down (colic) we may bring her and her parents as well. She is ony 3 weeks old, so we should cut her some slack.
Susan
Susan0 -
Oh yeah, and on the maid rite topic. I have had them in Iowa. My husbands family lives in Iowa and he loves those things so we have them almost every time we go back.
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I had a nice visit with the surgeon today, we did a conference call with all the doctors. I am going to have the mastectomy. It was a tough decision, but I think that's the best way. All of them felt the same, but said it was kind of borderline. He has taken 1/4 and will have to take another section that would end up being about 2" x 2" x 1" and pray for clean margins. He just hates to have me go through a potential third surgery. They all were breathing sighs of relief when I said "I want a mastectomy." I guess it's not uncommon for women to have a second re-excision, but he would be taking another substantial amount. He said I would be off balance and the surgery would be hard on the remaining tissue. Monday is the day for mastectomy, chemo port and axillary lymph node dissection. I will have drains until the end of next week. He said if I am not on pain meds, I can drive after 48 hours, just a short distance. I just need to be able to drive my mom and son to the store, etc... if they need to go. We are planning what we need and will be running errands all weekend to be prepared.
I work at home, doing computer work, answering the phone, etc... He said he would leave that to me when I start back to work, but made me promise to take it easy and take breaks. It's not a problem, I have a futon and a big screen tv in my office. lol My mom and son are home with me, so I do have people to make me behave.
He said something about two weeks later getting a bra and a form, then turning me over to the oncologist, but he would be active in my care and wanted to keep up with my plan until I was done with chemo, had the port out and would continue to follow me from here on out. I still haven't decided about reconstruction and he said I could wait. I really don't think I want to have it done, so I need to know what people do when they have a single mastectomy. I assume you purchase forms like are in the TLC catalog/website? Do you need special bras? I guess you don't do anything until you have healed. I am not small chested, so I will wear layered clothes when I go out. Most people probably won't notice, I don't want to be too self conscious. I forgot to ask if I come home in some type of binder. He said he uses dissolvable stitches and there will be 3 layers, but no stitches to remove. I will have two drains, but only for a few days. I might take up our church's offer of help from the nursing ministry. I am going to call a lady who had this done last year and see what she thinks. She had kids that drove and her hubby is a doctor, but she knows my situation and has been a huge support so far. She also told me she is much bigger wimp than me. lol She complained about her core biopsy hurting so bad and I thought it was a breeze.
Thank you so much for being here.
Nancy0 -
I posted a message the other night, got sidetracked and was logged out before I sent it.
Our local Maid Rite is going to be on the Food Network August 25. Alton Brown has a special called "Feasting on Asphalt" and they came to Quincy to interview the people at our Maid Rite. I didn't realize there was more than one!
Nancy0 -
cousin
MY cousin Izidor's visit is going well, and I thank you all for the ideas...the state fair idea led us to boone county fair which had hours of tractor pull entertainment and yes, Laura, there was corn on the cob! smile. We might still make it to a racetrack down the road. Will write more later, I also hope to get into Board of trade, there is a free section then the other section you have to have special permission so I guess we'll have to pass on that.
STAGING
What I wanted to add, I thought I was stage two "Staging pT1bN2MX, 2A grade 2" But today i asked the oncologist, after waiting 1.25 hours for him...before my LAST chemo number 6 yeah!!........."what stage am I" and how do you know because I do not see it on pathology reports, he said "_i_ decide what it is"....he said i was stage 3a.
i wrote it down, i think it was "a"
oopherectomy
I talked to the nurse about ovaries out and she asked a nurse with historectomy and there were four cons: gaining weight, severe hot flashes, bone loss and one other thing. She thought the peace of mind was a big big plus, as do I.0 -
Morning girls!
Pam....it sounds as if your mri did not show anything too bad. So hard to decide what to do but just waiting around for a few months..well, I don't know if I could do that. But truthfully...until someone yanks a piece of it out we are all just guessing. Hard decision for you tho....wish you luck in deciding. But..really...doesn't sound bad.
Nancy....I am so happy you came to your decision. You really took your time and are at peace. THAT is the most important part. Can't help you with the forms etc tho...try the no recon forum...LOTS of ideas.
Kater....Yep...sometimes Dr B is VERY late. That is why I always go for the 1st appt. I just try and remember as I am sitting there...if I was in trouble I know he would sit there and take all the time I needed so I figure there is someone else who needs him a bit more than me. Glad your cuz-visit is going so well. And did I read you right...last chemo? WaaaaaaaaaaHoooooooooo!
Susan...yep, nausea getting better. Just another little pain in the butt from bc treatment.
Rita...when do you start your arimidex? How's the walking going?
Nicki...where you at girl? Miss your happy graphics...
Have a great Wednesday!0 -
Hi Wendy - I got the impression the decision was up to the surgeon not me. Well, at least he will make the recommendation and I will probably follow it. I see the surgeon this afternoon so I should know more in a few hrs. Thanks.
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Hi Pam....
Wrong, wrong, wrong. It is YOUR body. You get to make the decisions regarding treatment and never let ANYBODY tell you any different.
That being said, of course get all the input from all the dr's. And of course too, your insurance and what will they pay for...another mri they might not want to do.
YOUR body, YOUR decision. You are the one that has to live with this beast, not them. If you can wait, wait. If you cannot wait, don't.
Well...off my soapbox but as a nurse and working around drs since the 70's I've learned that they really aren't gods...they get to make opinions, not decisions.
Good Luck with whatever you decide...hugs!!!!0 -
Hi everyone,
Still have an unexplained swollen arm. CT Scan did not show anything which is a good thing, but I will have the port removed tomorrow, hoping that will clear up my arm.
I held off having my herceptin treatment this week b/c of my arm so I will start that back up on Monday hopefully and start my rads on Tues. I had my rad sim yesterday. Hoping that my herceptin treatments will go ok w/o the port, I really don't want another port put in later.
Michele0 -
Hey Wendy!
What a thought we should all carry with us as we deal with this beast:
"..I have been around drs since the 70's I've learned that they really aren't gods...they get to make opinions, not decisions."
I will carry this thought with me. Thanks for your spunk.
Susan0 -
Kate.........YEAH!!!!! No more chemos! You've joined the "Done with Chemo Club" and isn't it great? So glad that your visit with your cousin is going well.
Michele, I'm sorry to hear that your arm is still so swollen. Hopefully the removal of the port will do the trick. So what did you think about the rads sim?
Pam, please let us know what you decide. Hang in there! HUGS!
I've taken Arimidex for three days now and no side effects of any kind yet. How soon did the nausea hit, Susan? I also golfed in the heat today and thought I might feel the effects but so far, so good!
Wendy, I've been walking the 2 miles in the early morning but didn't do it today since I golfed. I will get back out there tomorrow morning and go the 2 miles. Then next week I'm going to up it to the 3 miles that I always walked before all these health issues appeared. I really don't mind the walking once I get out there and get started. I'm just not always self-motivated any more.
Well, stay cool everyone!
Rita0 -
Talked to the surgeon today, he said he wouldn't be alarmed about getting called back, false-positives happen all the time. He didn't seem alarmed by the MRI or US findings and said he would do a MRI in 6 months so I guess that is the outcome for now
I asked about my cramping pain and he said not to worry about that either, didn't have a solution. Anybody get sudden cramping in the BC area a year after treatment? Happens more when it is cold outside for whatever reason. Could be be post radition related? Just annoying when it happens. Feels like a leg cramp when you jump out of bed in pain but in the breast.0 -
Pam, that sounds really positive to me. As for the cramping pain, I have had it under my arm close to where they removed the four lymph nodes. My oncologist and radiologist didn't seem to think it was anything to worry about. They just said that there'd been a lot of damage to this area and the body was just trying to adapt and heal. I assumed it was more muscle related but never really pinned them down to a better explanation. So glad to hear that you've had positive news.
Rita0 -
Hi. I'm new, and I live in Illinois, so I thought I'd introduce myself. I was just diagnosed, and am still figuring out what to do. I'm sure you're aware of the many decisions (Do I have the right doctors? Is this really necessary? Maybe someone just make a *big mistake*!).
Good vibes to all of you!
Reader Girl0 -
Hello Reader Girl! I'm sorry you had to join this battle, but happy that you found our little rag-tag group of troops. Tell us a little about your diagnosis, where you are, etc, and maybe we can help a little. We all know what it's like to feel overwhelmed.
Pam, please keep us up to date! I've been sending you (((hugs))), hoping everything is going to be okay. Wendy is right- your body, you decide! Also, my doctors told me the same thing as Rita's- there's been a lot of damage done to that area and your nerves are trying to adapt and heal. I have what seems like burning and crazy-ass-tingling (more then mere tingling, you know!) along my scars.
Nancy- Hugs a plenty to you. I hope that having made the decision has given you some peace of mind. As for your form- don't let them rush you into getting that either! Wait until you are healed well enough before having a form fitted. Maybe the 2 weeks will be long enough, maybe not. Also, where are you having the surgery done?? Check with the hospital to see if they (or a support group) give out post surgery camisoles? My Y-Me group gives one to all bc surgery patients. The camisoles usually have soft fiber forms that you can remove/add material to get to the size you want.
Your insurance should cover you for at least one form per year- check with them to see, and to see who you should go to in your area. Don't purchase them from a catalog until you have been fitted by a professional! Once you know your prosthesis size, shape, then you can order from a catalog. Also, the fitter should be able to bill your insurance company directly.
Laura- I registered for the walk under team No Surrender. But I think they are still having problems with their online stuff. I wanted to make a donation to you or the team- and there is no way to make a donation from the No Surrender page! What good is that? I can't even send my friends to that page if they want to give. Unless I'm missing something, but I just can't see it.
Has anyone else registered?- because, again, I couldn't see who was on the team.
Rita- I learned early on that I write too much, take too long, for this board. I was constantly losing what I wrote. So now I either write it on line and then copy it, or I do "control a, control c" to highlight and then copy it, BEFORE I hit the continue button!
Hello to the rest of our Illinois Gals! I'm still walking about 4-5 miles most days with my training partner, Sharon. We did 9 miles last Saturday, and hope to do 12 miles this Saturday. Pray that the rain holds off!
Well, off to work. I'm demoing some strange concoction of cottage cheese and tomatoes that one of our other demo ladies came up with. I'm a little disgruntled- they could have scheduled this for when she was working!
I'm off to work. Have a great day!0 -
Welcome Reader Girl....although nobody wants to join this group, the gals on this thread will be here to help you through. We are in all different stages of our journeys and there's always somebody who understands and can offer suggestions or advice when needed.
It brings tears to my eyes each time a new Illinois lady is diagnosed. How well I remember those first few weeks! I was so scared, so enraged, so emotionally upset and in a complete state of disbelief. I cried for almost 10 days straight and then I finally got hold of myself and decided I'd better get informed and charge onward...........but then there were so many different decisions to make and I was so at a loss. HUGS to you! This is one of the worst times of the journey.
Where are you located in Illinois? Perhaps one of us is nearby and can offer you "a little extra" contact and support.
What was your diagnosis....what type of breast cancer and what stage? What options have you been given?
Hang in there. The journey probably seems very mind-boggling and terrifying right now. Although is not "a walk in the park," it is doable. We hope to hear more from you.
Rita0
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