Illinois ladies facing bc
Comments
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Happy Birthday, Laura! The sun is shining for you!
Wendy, thank you soooo much for the card. It made my day. I'm surprised at myself that I have been so emotional about my dx anniversary. I started crying last night while I was walking the track at the gym - just thinking about a year ago. But, today I was so happy to see the sun. All is good.
Good luck with the last AC, Julie. You are a real trooper. Are you doing Taxol or Taxotere next? I found Taxol much easier than AC.
Laura - I was also thinking about sparker last night - we haven't heard from her in a few. Hope you are doing ok Sabrina.
Glad you found a great doc, Leesa. I think that makes a huge difference. I like my onc enough, but I LOVE my surgeon and completely trust his opinion on things. I like having 2 doctors following me through this. Let us know how things are going with you.
Thinking of you Jackie. Hope you can get this figured out.
Hi to everyone else I missed! Enjoy the sun.
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Yeah Sabrina on last chemo...
yes on luncheon coming up...
Doctor List
We briefly discussed in addition to the addy list, to have a doctor list
(addy list are those who want their names and addresses and phone numbers revealed, pm to Laura)...
I could do a DR list,
for example.
good doctors list...
say why name and address whatever you want and maybe just your code name from this group> or email address....
bad doctors? who to stay away from?
and also, sometimes i heard bad lists from support groups, i for one would like to know who to steer clear of, I KNOW that some people like and hate the same doctor, we could all keep that in mind..
If anyone wants to participate....email to me....
anonymous email, which will be deleted in a few days...
k
z
whitmore
and then add something like yippee after that...
yahoo and all that, 8-)
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To Sabrina on last chemo AND Julie on last ACThere is a light at the end of the tunnel!!!
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Happy Birthday Laura!! 0 -
Jackie I'm sure by now you've "tried everything"(and are tired of hearing try this) My sis works in hosp and suggests for nausea sip on flat coke (not pepsi) Don't know what it has in it but seem to help for some. I found relief with mint. Small after dinner mints. Or junior mints. Surprisingly as I don't like mint!!
Blackjack Don't feel left out having to slave away while we all chat..... I do most my chatting @work!! Inbetween busy times ( hi-speed vs dial up @ home) Yes my boss knows!
Back to work!
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Sorry Laura I wanted to get you a GTO for your B'day maybe next year !
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A MAMMOGRAPHER'S POEM
"Forgive My Caring"
I care about you, So I will do my best
To squeeze you firmly, To flatten out your breast.
Don't think me cruel, It's my job to compress.
It's not my intention to cause undue stress.
It's not my intention to cause you pain.
I have to be thorough, There's so much to gain.
The radiation dose I'm able to reduce.
I'm getting more info so we can produce
Films of high quality, A reading that's true.
Since your breast health is the important issue.
So forgive my caring, I can't help it, I do!Poster on wall in mammo room
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Wendy and Karin....such neat graphics today! Keep them coming, gals. They really liven up the thread.
Sabrina...so good to hear from you. We were getting worried and wondered if we'd frightened you away! Glad you are back and glad that you're finishing up the chemo portion. That has to give you a good feeling! :-)
Julie...yeah! Half-way done! I'm sure the end can't come soon enough for you with all the problems that you've been having. Hang in there and it will be over before you know it.
Jackie...hope you're feeling better today. You deserve more good days than bad ones. We will just have to keep sending good vibes your way!
Blackjack...you're going to be doctored out by this time next week! I hope all the appointments go well for you.
O.K. JanClare...Here's the answers to #6 and #9....the only two questions that you missed. #6 is Keys and #9 is deuterium (and yes, I did teach this in 8th grade science classes). Excellent job!!!
Well, I'm off to look over the lesson for the youth group tonight and write a few questions. This sun has me energized!
Hello to everyone! I hope you all enjoy the sunshine and have a good day!
Rita
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Connie -- my "cocktail" is actually CAF and won't change for the last three. I'm completely done after that - no rads and no additional meds since I'm triple neg. That's kind of scary. I will actually start my reconstruction hopefully by the end of May and continue that through the summer. Hope your surgery goes well!
Julie
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OK...back from rads onc with new stuff!!!!
He taught me some exercises for anyone and everyone to do with regard to preventing LE (or improving it for that matter) and I will show you guys at the lunch...very simple arm movements...to be done twice EVERY day, 20 reps on the affected side but I asked him why not do both sides....good to get lymph fluid moving and good toning to boot and he said...go for it! This was something he said he picked up at a conference he attended this winter and rad oncs are just starting to realize how important prevention of LE is for ALL bc patients, regardless of how many lymph nodes out and if you had the nodal area zapped.
Now...re: LE, flying and Sleeves. He said he feels it is much more important to know if you had lymph nodal area in armpit zapped or just the breast nodes. Then...how many nodes you had removed. Anything over 3-4 nodes increases your chances of developing LE in your lifetime as does having your armpit zapped. These 2 things alone can raise your chances in the 20-30% range. Since I work out and am on the slender side and had no armpit zapping, by chances of LE LIFETIME development is probably around 5% as long as I keep on protecting my arm. That being said....I had 7 nodes removed so that alone raises my chances back up to around 10% and at that level he suggested that since I have NO symptoms of LE to go to a pharmacy/health store and be fitted for a more over-the-counter type sleeve and gauntlet for flying and he gave me an RX for it so the ins. will pay for it. At this point he felt that it was not necessary for me to go to the LE specialist as they seem to always put the patient thru several weeks of instruction and therapy as well as getting a custom sleeve/gauntlet made and he felt that I did not require this at this point. HOWEVER....if I wanted to go, he was more than fine with it. Also told me....If I get any type of bite, bug, dog, cat, human (we had a good laugh at that one!) and it doesn't improve within a DAY or TWO...to call him RIGHT AWAY so he can get me started on antibiotics and to get in to see him and then if need be, to get an emerg. appt with the LE specialist to start treatment.
OH...and the rash...he said that this can come and go for a few years and is common. If it becomes red and itchy, or lasts more than 2 weeks with OTC itch-relief creams to call your rad onc for rx cream and/or an appt.
I then asked him if all you ladies should just send him a check...we laughed and laughed. He didn't say no, tho! He's paid by the hospital so of course not! But that's why I love my rad onc!
Whew!!!!!!!! Well...I TOLD you guys I was going to talk to him! I hope this helps with the sleeve business. What he said makes perfect,wonderful sense and I am going to get my sleeve/gauntlet.
Sabrina....wooooohoooooo! You're done!!!! You did it!!!!! You go girl!!!!!!!
I will write more later to the rest of you...just wanted to get all this stuff from the rad onc down on paper. Need now to go change the battery in my LR motion detector as it went off, but luckily I was only 5 minutes from home when ADT called and I told them to hold off on the police. Always something around here......
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RITA
GREAT BALLS OF FIRE A 200!!!! Sign her up on the pro circuit!! How long have you been bowling? Wendy Thanks for the info think I will be on safe side & see if wally world has sleeve. I think I had 4 nodes removed but I DID have rads in armpit area. Can't wait to see the exercises!! (hope they don't kick us out LOL)
I am sooo looking forward to seeing everyone..
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OFF TOPIC
OT
ALERT
Rita and Sharon for questions:
Brainstorm for questions, what shape is chicken wire?
(heard it on WGN, thought it was a reasonable question)
Kater
DON'T ask me answer, i already forgot, not octagon, maybe hexagon?
NOT the one that i never heard of that started with "d"
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AIRPLANE ALERT, COMPRESSION SLEEVE
COULD BE IMPORTANT EVEN 3-5 YEARS AFTER I HAVE READ.
you have to be SIZED by physical therapy department to get a sleeve. I was sized, BUT I did not get to Lehans in Dekalb, IL yet to get one ordered.
In St. Charles they will not do insurance papers for you I heard. Grimms?
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wendy, i just read your Dr. B report, thank you!! i printed it out.
they should really (jesse?) be putting all that in a brochure...OR EVEN ONLINE. OR EMAILED TO PEOPLE IN FRIENDLY NEWSLETTER CAPS NOT INTENDED, just thinking i should get back to work!
remind them i can put things in desktop publishing software with photos, any time after i get tax work done!!
OFF TOPIC TOWARDS THE END, VIDEOS FOR EXERCISES
oh, lunch
can we videotape you even on my little treo, then we can email the video of exercises to all that want it, i got the idea because i told my mom that Rita said about the guy's mouth? dropping when i flipped my wig off to show my hair at last lunch...mom said, did she get that on videotape?
if you didnt see Amer funniest videos, they take pc uploads now and are asking for funny pet videos, as of Sunday March 3 08
(is that a rerun, i dont know)
afv.com i thought they said, but you can always go to ABC.com
if i were better organized, i have a few to send but also have to know where my video editing software is, although i think movie maker will do it, too...
a non pet one i wanted to send was my un*** walking down hall at hospital when they changed his room...in his hospital gown, he picks up his walker (in the air) and walks and his diapers fall down. He is6 foot 1.
kater
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OK...I'm back (you lucky girls!).
Karin...if you get a script for the sleeve AND gauntlet (DO NOT DO SLEEVE WITHOUT THE EXTRA GAUNTLET FOR THE HAND...BAD!) you should try a medical supply house and get your ins. to pay for it. Rad onc also suggested getting 2 at the same time for washing, etc.
RE: Hot tubs...he said, well, he wasn't POSITIVE but he would not recommend just jumping into one on your 2 week vacation. The heat MAY cause circulation issues. I don't do hot tubs but I asked for you guys....
Blackjack....what did you find out today, or was it another day you had the appt?? I swear I can't remember anything anymore....I will need to start printing out these posts and referring to them that way. I'm not sure about how many for the 21st....NancyLa, Mich101, Karin, Laura, JanClare, Kater, you and me. That's 8 for now...Connie needs to check for a sitter first, Leesa hasn't answered yet. Susan and Smerf....I'm not sure and if I go back a page I lose this stupid post. Rita...I'm not sure she'll make the drive again, but I think she was thinking about it...I think. Duh, again.
Laura...whatcha doin for your BIG BD? Something exciting planned? Whatever it is, have a ball!
Keep thinking about you guys Jackie and Julie and Sabrina...chemo has NOT been good to you! Well...and this is where you three get to smack me when we meet....at least you know it's working!!!!! OK..smack away! Seriously, wish I could help in some way.
Leesa...I had carboplatin and taxotere, but Avastin was not indicated for me. I was one of those intensely irritating girls who, except for the hair loss, experienced very few se's from chemo and those only lasted a few days each round - really was just the metally taste in my mouth. I guess I need to be smacked once for that too! No nausea or fatigue, but then I took my meds religiously whether or not I had symptoms and that might have made a difference.
Well....off to try on the new spring stuff I got at AnnTaylor Loft this am - Geneva Commons is right next door to the Delnor Hospital complex and I decided that I had 2 GREAT reports and I deserved something cute and pretty and springy to wear. Just need the weather to cooperate!!!!!!
Hugs to everybody!
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COMPLETELY OFF TOPIC.
ps off topic and i'll shut up
My un*** was very professional and I hesitate to submit it BUT, when I got $25 for readers digest joke in junior high, I remember cassette tap RECORDing him say,
"she got 25 dollars for THAT?!"
She got 25 dollars for THAT?"
(it wasnt even funny, ironic now, i guess i have to tell you it was something like,
"one gal to another, i like your hair, is it homegrown?"
odd i was talking wigs in jr. high! ....
anyways, since he was impressed then, think of how impressed he'd be if i got 10,000 for submitting his video. hmmmmmmm
at this point I cannot ask him and get a real answer.
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Kater...just read your post. You don't HAVE to go to PT to get measured as they can measure at the medical supply house or you can do your own measuring and then check on-line. There is a place called Total Home Health which is in the same strip mall as my gym so I am going to go there, prob. next week or so and see what's what. I know I did see them at WalMart and it was this type that Dr Bendre was referring to for me to use, just as a precaution. And you are so right...I'll need to use it for forever. These sleeves aren't too costly...the custom-fitted ones? YIKES! But that may be something you may need as you had many more nodes out than I did....and I'm guessing you got zapped in your pit, too, correct?
"Zapped in your pit?"????? Who'd thunk I'd be asking THAT question of anyone and NOT thinking it was rude?
My, how times have changed! (PS: Leesa, can I touch your boobs?)
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Wendy, thanks for all the info!
Maybe because of insurance they wrote a script for the PT, measuring and so forth. They do not measure in some places, I guess....
Total Home Health...is very high priced!
I got a patient lifter from them once used, and they forgot to supply us with battery to use it and my uncle was HOME by then! Thank heavens we had a manual lifter which we are still using...
I heard they weren't good from the PT person, pricewise? or something, but dont quote me on that...maybe okay for what you need.
They DID take it back full refund (but i drove it back in truck).
and the delivery guy DID ask me out (that doesnt happen very often!) but then i had bc.....his goal was to retire and race cars i think....he was saving up his vacation....
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science question?
how big IS a lymph node, anyway, in inches?!!
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Bye Sharon, today is the day you leave, no doubt you are on your way!!
motheroffoursons
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normal not inflamed lymph node about size of pea about 1/3 (.39inch) of an inch ( if I remember right!! LOL)
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Happy birthday to you ...Happy birthday to you...Happy birthday dear Laura...happy birthday to you.
(in case you were not sure.....these are me singing) As you can tell....I am not the creative one....I am the accountant. 0 -
Susan
Happy Birthday to one of our favorite ladies in Illinois (perhaps in the whole country). I love Nancy's graphics....I think it is very creative and I would bring my accounting needs to you anytime. Unfortunately for me, my graphics are non-existent. Nancy, if I ever figure out and actually place my avitar on this thread, I will teach you. I thought it was a medical term at first!!!!!!............
So Laura just know I am thinking of you right now and I see that great smile you have. Happy Birthday!0 -
Me again. I didn't want to mention lymphodema in the same breath as "Happy Birthday" I did not realize that there is a whole area here on BC.org on just that subject, along with a whole thread on just it. I don't get around much, I guess. Maybe Kater told us about it. Anyway, Iam getting mixed messages here. I am going on that trip to AZ and I am not sure if I should or should not get that sleeve.
"Long plane flights. Although it's rare for a long flight to bring on lymphedema for the first time, it may worsen an existing case of lymphedema because of the changes in air pressure."
What is LONG?
Also, if you look at the artticle on BC.org, one could even walk away with the interpretation that one should not wear a sleeve unless several nodes were removed. Then, Wendy's guy said that you should if your armpit was zapped. My armpit was not only zapped, it was FRIED! So I am confused. I will call the doctor tomorrow.
Also, what is the Chat Room? I am a cautious person and I am afraid to get into something "Live" and then worry how to get out gracefully. What is it and has anyone had any experiences?
You can tell I spent some time on the computer today. I am still on half day bereavement and if how I am spending my days now is any reflection on how I spend my upcoming retirement, I sure better get a hobby.
Rita, I do not know a thing about bowling (other than one should probably not do it with the "affected" arm unless one is wearing a sleeve.....couldn't resist throwing my new knowledge around) but I can tell by Karin's reaction that a score of 200 is like superstar stuff. Good for you.
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Hi all- I only have a few mintues, but I had to stop by and wish our wonderful Laura a HAPPY BIRTHDAY!! We love ya, sweetie!
Also, Wendy- would you consider going to Benchmark Atlantic in McHenry?? http://www.benchmarkatlantic.com/ My fitter, Cathy Boll, is absolutely wonderful. Since you have a scrip, why not take advantage and get a sleeve that you know will fit?? I give her and her assistant very high marks. She will bill your insurance direct.
I've been trying to hold our bc sisters who are currently going through treatment/ diagnois (like Julie, Jackie, Sabrina, Terri, and Leeza) in my heart. I'm praying that in another year, they will be feeling as well as I do right now.
Blessings to all my IL bc sisters!
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Julie - So happy you popped in! est wishes to you with chemo. blackjack - kater is definitely our photog, but she's also our tech goo-roo! Cool...that your sis and I share the same b-day...she must be lovely, creative, intelligent, witty...LOL
Wendrew...LOVE the squirrel! Thanks for the graphic! I love it~
Rita - Thanks for EVERYTHING...loved your card and gift...I will wear it proudly and of course think of you each time!
karin - TOO FUNNY! I love the graphics....especially the RACE CAR! LOL thank ;you!
Nancy, Susan, JanClare and ALL OF YOU...Thank you so much for making my day EXTRA SPECIAL!
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Just a quick stop in to say HAPPY BIRHDAY Laura!
Michele
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Hello, back home and feeling fine. Just a little tingling in my face and head, probably from the benadryl. It immediately makes you want to fall asleep but I fight like heck not to. I hate not having control over my body. I still haven't slept even thought my body is telling me to.
Sorry I haven't been checking in often. Just have so much going on in my head just trying to sort a lot of things out since this part has come to an end.
I go back to the dr in a month. I am having a bone scan done and hormones check. I asked if I could get my ovaries removed. I was dx a few years back with polycystic ovarian disorder. I had my uterus removed also a few years back because of fibroids but the ob-gyn would not take my ovaries because of my age. I have to take glucophage. But no diabetes. I was also dx several years back with hyper/hypo thyroid I took the radioactive iodine pill to shrink it. Which I have recently read on this board that there is a link between the pill and bc. My hormones are out of wack. Weight gain, excessive hair in places women should not have it, mood swings, dry skin, etc. He think because of my hormone recepters that it would be a good idea to take them out, but want to check to be sure. He thinks I have already started menopause. Having a severe hot flash right now.
But anyways ready to move on. Physical therapy for the lymphedema and what ever else.
By the way Happy, Happy Birthday Laura hope it was a blessed one...And many, many more...
Question? My family and I are going to Wisconsin Dells for spring break during Easter. Is being in a hot tub safe? I know I read previously that it probably was not but just wanted to ask.
Well thanks so much for your thoughts and prayers.
Sabrina
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Happy Birthday Dear Laura,
love
leesa
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Got results of my MRI it has spread into my pectoral muscle, anyone know anything??? also, have a couple of little spots in the other one (damn) have to go for a mammo and an ultasound on that one tomorrow. I'll also see the surgeon.
getting really pissed off
leesa
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