Illinois ladies facing bc
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Buddy - If you can not get a referal from your primary call your insurance company and say you want a second opinion and ask who they would like you to see. They should be able to give you names and let you make your own appointment. You can then call your regular clinic and say you need copies of your records for a second opinion and they will have them ready for you to pick up. I made my own appointment for a second opinion at another clinic here in the champaign area after my oncologist wanted to switch chemo treatment 4 from the end and start something new with all new side effects. I was having lots of neuropathy from taxol. After 2nd opinion ended up stopping after 9 and just continuing with herceptin. It was sure easier to do with another dr on my side. I do still have to have rads but i knew that going in. The chemo was a big shock to me because I did not know I was her2+ until my first meeting with onc. Up till then BS had said lumpectomy with clean margins, rads and pills. They don't give herceptin without chemo, so did the weekly taxol, but that is why I was willing to stop at 9 because I still could continue the herceptin. You need to know all your choices and why they are recomending what ever they are. Remember they want to throw everything they can at cancer even when it might not be the best thing for you. It is your body and you do get to decide what is done to it!
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Jo - the first chemo tx is generally the scariest one. I'm not real sure why....we do a whole LOT of things for the first time but most of them don't have the power to upset us like a chemo tx. I can't remember exactly what I was afraid of most my first time.....besides every thing. I had never seen anyone get chemo before....and all I knew was that it would go through my veins. Partly I guess it's the knowledge of how strong the chemo is, and of course, you generally are given papers that spell out some of the expectations be it a good experience or not so good.
It ends up generally being rather anti-climatic and since it's cumulative you may feel very little on your first round and the se's, if you get any don't last very long. I would just say....take the meds as soon as you feel anything -- even if your not sure. That way you won't have to gain control after the fact.
Most everyone does fairly well. Just listen to your body. We will all be thinking about you and sending healing, soothing energies your way.
Hugs,
Jackie
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Hi Annette....great advice for Buddy.
Hugs again,
Jackie
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Yes, there seems to be a stranger in your midst...it's Carol Berrypatch and I am coming out of lurking.
Thank you to everyone who gave my daughter Allison such a warm welcome and cyber hugs. I would give anything to be at her side as she prepares for her all important 2nd opinion. I plan on travelling out to VT as soon as we know the next step. She is truly a lovely young woman and has her wedding coming up next September. I just so want everything to be OK for her and her fiance Michael.
Laura - You told me about Paula when we talked on Saturday, and she has been on my mind ever since. I'm praying for her. This frickin' disease......
Susan - Hooray for you!!! The best is yet to come. Enjoy every minute of your retirement! Sitting here green with envy!!
MamaQ - Yeah, the hair thing is not good. I finished 3/24 and my hair is about 3/8" long, er short...haha! And what was the first thing that flashed into my mind when I got the dreadful DX? Slash, poison, burn? No, just "oh Gawd...my hair!!!!" Then I got over that and started to get this cured. Kicking and screaming all the way, but cancer free and and on the Arimidex highway. I go out of the house 99% of the time with my wig. When I go walking, I wear a scarf. But with the hot weather coming, there will come a day where I maygo "commando", even to work. Good luck with your chemo...we've been on that road and are pulling for you! Listen to your body and REST!
Hair is sprouting everywhere. Just not fast enough on my head. Patience was never one of my virtues. Eyebrows are coming in, but no lashes yet. Speaking of brows...I use Paula Dorf 2+1 for brows. It is a powder that goes on with a stencil. Looks really natural. I lost all of my brows and for a few weeks, sometimes I thought that I had put them on crooked, I probably did! LOL!!! I had no "landmarks" to go from!
Buddy - My vote is for a 2nd opinion. I can see where you would be uncomfortable stopping midway through chemo. Your Dr. should urge you to get a 2nd opinion. Living in the Chicago area as we do, there are lots of wonderful and super smart onco's out there.
Donna - You're so right about accepting the help! Sometimes you just have to have help. Jim fell off the ladder and broke his heel just as I was going back to work after 7 months off, doing rads, and my rads exhaustion came at the start of rads, not at the end. I finally HAD to accept some help. I was truly touched by everyone who was so willing to jump in and take over.
Well, time for bed. Today was a real stinker at work. I am sorry that I have been neglecting my friends. I'm on the computer all day long at work, and just need to get back into the habit of being on this machine as well. But I am getting better as now I can DO THINGS after working all day!! It'a amazing!! haha!
I've really missed you all! Believe me, even though I'm recovered, I still need and love my "Fairy Boob Sisters! Love and Hugs! Carol
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Hi Girls... Paula had her chemo today....I am so upset... she had a very bad reaction to it. She was taken from the chemo room to the ER... Please keep her in your thoughts and prayers. Gawd...this is so difficult for me to accept. I just can't seem to understand it....I just can't seem to accept it. BUT - I will be fine... it's not about me... it's about her.
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It is 47 frickin degrees on my deck! WTH???????? I actually not only had on long pants and a long-sleeved shirt but a JACKET yesterday! OK, I know it's not snow and ice but c'mon! It's JUNE for cripes' sake!Buddy....count me in for a 2nd opinion! Did you maybe google somethng like "have to take a break from chemo for months" and see if anything pops up? Just a thought....
Jo....Happy Anniversary to you and your best friend! It was 31 years for me last December! And good luck today....the first is always the scariest as you have no idea how you will react to the actual infusion, or how you will feel tomorrow, or next week....and then of course you just wait for the day the hair starts to hurt (it does!) and it starts to look "dead" and then....the Great Hair Exodus. But it grows back! Really it does! If I hadn't had chemo I would never have changed my long hair style, which at my age was getting a bit silly. I went yesterday for my hair appt and I had her cut it shorter still! I LOVE it! Something maybe for you to do is to page thru some hair mags and see what you might like .... THEN....take a pic of yourself bald and you can paste it into one of those sites that lets you "try on" styles, cuts and colors! This was actually quite amusing for me. I found out once and for all that NO.....I would NOT make a good blonde! Yuck!
Carol.....Carol Who???? Oh....I remember you! The quilt lady!!!! Only kidding! LMBO...your hair is 3/8" short! Truthfully....glad to hear from you! Fingers crossed for your DD, whatever she decides.
Donna.....good advice! The offer of help is truly a gift...never thought of it that way. But one thing I DID learn is that women are very much alike and we don't want to bother anyone, don't want to ask for help. If I am ever in a position to do something, I will just DO IT - not ask.
Jackie....I don't know where you get all this insight but you are truly remarkable and always spot-on about everything. I keep telling you girl.....a book could be in future!!!!
Susan....must have been a bit sad for you! No turning back now tho! Just think of all the lunches you can now come to!!!!! Fun Stuff!!!!! Altho now we can't talk about you.... (And....for those of you who have not met Susan....her hair is simply GORGEOUS!)
Connie...yep, what is up with that stupid one hour school day???? DH has explained it to me but I don't care...just simply stupid and hard on the working parents is my thought! DH's kids last day is the one hour next Wed.....they had 3 snow days (or rather cold/ice days!)
Laura......good grief! Yoiur friend is lucky in that they found some drugs that can help and THEN she gets a reaction and THEN ends up in the ER??? OK...that is ridiculously unfair. Seriously. Thoughts out for Paula, and for you. My offer to send some cards your way to forward, if you think she would like that!
Time to scoot off to the shower....hopefully I can duplicate the look that my hair girl gave me yesterday but you all know how that goes....we just never can blow dry the same way they can!
HEY LAURA....that's what we need! A "BLOW DRY FAIRY"!!!!! I pay well.......
Have a wonderful if a bit chilly day...better tomorrow I see, 75 and sunny - perfect weather for cutting the grass - lucky me, lucly me!
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Hey everyone... Just wanted to pop in and say "thanks for all the warm wishes for me and hubby, and for chemo. I'm feeling pretty positive still. Just slightly nauseaus. I will let you know how it goes. Hoping a positive attitude makes it all a little easier.
Jo
Laura- Count me in for some cards too. If you think Paula would like it.
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Oh Laura..Feel for her and being long distance you cannot be there. Praying and know that this has to go in a better direction as she is getting the medical attention. Just have no words for this, Hang tough as a friend and we are hear to listen. Why does this have to be so hard for some!!!!!!!!!
MamaQ..Drink lots of water.Do you have any Biotene Mouthwash ? This is what i use as i did from day one to avoid any harshness for dry mouth and icky taste after treatment,. Get at any local drugstore. Anything that comes up just ask and like everyone says here, listen to your body and REST!!!
Buddy...What great advice given for you!!Let us know what you ended up doing.!!
Jackie.. Out anniversary will be July 16th and it will be 16 years.!~WOW!!!Shocking how fast the time goes. 34 years..how awesome!!!!!!!!!!!! nice to see good marriages these days as so many divorce without even try to work it out!!!!
This weather is too cold.. i was so chilled yesterday !!We are goin to Michigan this weekend in our RV. A quick get away before WED;.. for my LAST treatment!!!!!!!!!!
JO.. Prayin all goes well today. Having one done will be so much easier emotionally!!!
Hugs ,
Donna
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Yeah Girls!!! I knew I could count on you. I just dont know what I would do without you. Wendy you are right about researching. I have tryed every possible way of googeling . (chemo stopping temp, chemo interrupted, I can find nothing. Today I meet with the rads Dr. I'll let you know what she says. As if I didnt know.. Thanks again for being there when I need you all.
Brrrh. It's cold.
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Morning...
MAMA - Hang in there... hope you're feeling okay today.
Donna - Have fun in MI! Next week you'll have something to celebrate.
Buddy - How about starting a thread in the chemo Forum?... about skipping chemo.
CarolB - Best wishes to dd!
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Thanks... girls... I e-mailed you Paula's address... she will be so surprised. I haven't heard yet today how she's doing... I think it's late at night there right now.
Wendrew - This one's for you:
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I did such a nice post at home and apparently forgot to hit the submit button. Got on my computer ( before work I try to catch at least 10 mins. ) and found that my SIL, Heidi was transported in the very wee morn hours 12:30 a.m. ) Wednesday night/Thursday morn to Barnes Jewish Hospital in St. Louis, Mo. Those closer here will know but for those up North...Barnes ( been there yrs. and yrs. is a big teaching hospital ) and as our hospitals in the general vicinity of Centralia are small...anything that is dangerous or of major concern will almost always be referred to Barnes.
Heidi, my SIL went in ( to St. Mary's - Mt. Vernon ) on Monday to have angioplasty on her leg. She has severe PAD and has for some time. 90% blockage and she had some gangrene on her foot. A Dr. there attempted four different times to thread the tube into her groin....broke at least two of the needles and failed in all attempts. I can't imagine the next part.....they sent her home knowing wouldn't you think -- that in 4 attempts they are more than likely going to dis-lodge some of the plaque. Well, she collapsed at home, quit breathing and had to be rushed by ambulance to the hospital here which is also St. Mary's -- Mt. Vernon merged with St. Mary's here. They did a battery of tests ( results not sure ) but it was enough for them to figure that she needed to be in Barnes. My guess at this point is that by-pass will have to be done since she gets no blood or oxygen to her leg.....and who knows for sure what else. Heidi's Dad had this problem and his children inherited it.
So I had a full day lined up here and will have this on my mind as well. We did see Heidi at St. Mary's here a couple days ago. Guess if she is still there and good chance of it, we will be over at Barnes on Sunday....Denny's day off.
Laura....thanks for the address. Will try and find some time to get a card. I feed feral cats after I leave here, then rush to Odin as I need my hair cut desperately, then back home to feed B. Boss and get some ironing done -- then on here to check on all of you and find a good quote....maybe I'll look from here ( my work computer ) and by that time I'll be lucky to know my name.
Be looking for me later.
Hugs,
Jackie
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" In the mountains of truth you will never climb in vain: either you will already get further up today or you will exercise your strength so that you can climb higher tomorrow."
Friedrich Nietzsche0 -
Illinoislady. My heart goes out to you. Stay strong. You are right about Barnes. Its the best. My Uncle went there also. She is in a very good place. Please keep us posted on her condition.
I just got home from the Rad Dr. I guess I need to eat my words. She was very nice. She said they normallly dont do rads on people with less than 3 pos. nodes, unless ..it was a node very full of cancer. From the beginning I have tryed to get the path on my nodes and have not been able. She is tracking it down to find out how much cancer was in my 2. She said if it was small amounts I would not need rads. I go back to her on Tue. We will see what she says. All of this over a 2 month intermission from chemo.
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IllinoisLady- I will be sending healing thoughts to you SIL. It sounds like she's in a good place. I know they will be there to help her.
Laura- Got the address, I'll be sending a card to her. I think its nice to get them in the mail. I've been surprised at the cards that I have gotten.
SO......... Guess who had an allergic reaction to her TAXOTERE today? I'll give you one guess. You got it, ME! A pretty good one, I started to feel a weight on my chest, then into my back, then legs and head at the same time, then my lips started swelling. I don't know what I would've done if my aunt hadn't been with me to go get the nurse. It came on that quick. Thank gosh, the nurse new what she was doing and the doc was there in a minute. (Probably less but it felt like everything was in slow motion) So he upped my steriods 5x the amount, at 9 and 3 tonight and we will try again tomorrow. I guess I'll get a lot of cleaning done at 3. I was in such a place to get this started and now this. Hope it works tomorrow, because I don't know what happens if it doesn't. Guess we'll see.
Jo
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Hugs, Laura. I hope Paula is ok and they find a chemo she can continue on.
Donna - where are you going in MI? Our lake house is on Paw Paw Lake in Coloma (just past Benton Harbor). I think we are headed up there this weekend as well.
Jo - sorry you had a reaction. Hopefully the steroids will do the trick. Good luck!
Buddy - good luck figuring out your situation.
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Jackie....OMG! Hope your SIL does OK....keep us posted!
Jo......welll...the only GOOD thing I can say is that with all those steroids, YOU can play laundry fairy for the whole frickin' state! Seriously...I hope they do the trick, which I am thinking they will. Fingers crossed for you....
Connie....have a great boating weekend! Did you get any results yet?
Laura...thanx for the address! Card will be going out! And it will be the first ever for me to Australia!
Wasn't today a wonderful day? Had lunch with my oldest and dearest friend at Rosebud in Naperville....we sat outside on the deck and just talked and talked and laughed. Truly a wonderful way to spend a sunny June day! Hope you all remembered to do something fun....
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Awww Jo! - I had a reaction like that to Taxotere as well. They will run the Taxotere in slower too. The steroids will help. Anyone here knows that I am most certainly NOT a fan of the steroids, but they do get you through chemo. And that's the point right now....just get through it!
Laura - A card shower is a lovely idea. I LOVED getting cards in the mail when I was sick! One will be winging it's way to Paula tomorrow.
Just popping in....TGIF tomorrow!!!
Love and Hugs, Carol
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Hi gals!
Wow! I feel like I need a few hours to get caught up! You've been a chatty group lately...and that's good.
Buddy, I haven't read all your posts but I did want you to know that my chemo was postponed for 2 months after my 4th treatment while they did the rads. Then I went back and finished the last two chemos. I'm glad that the radiation oncologist is being so thorough and is checking into the status of the nodes. It's sounds like you've got a good rad doc there. I do hope you're doing better.
Jackie, I'm so sorry to hear about you SIL. Hugs to you. Please let us know how she gets along. I will keep her in my thoughts and prayers, as well as Laura's friend.
Carol, I'm so glad to see you posting again! YEA!!!!
Jo, I'm so sorry you had a reaction this time. Just what you didn't need, gal. Hang in there!
We went through Carlsbad Caverns today and what an experience it was! Just awesome! Tomorrow we are continuing through Texas and working our way home. It's been a great but non-stop trip and I need to get home to rest up! LOL
I'll try to check in again on the way back. I'm sending good vibes to all of you gals in treatment.
Rita
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Laura
I was shocked to read that Paula was so unwell.
She is a member of our Aussie forum and as she hasn't posted for a while I just assumed that she had moved on and was doing ok.Her posts were always so vibrant....it really is very upsetting to hear what she has been going through.
I appreciate you letting us know.
Hugs to you and Paula
jezza
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Hello Illinois Ladies....
Just wanted to pop in before I go for try #2. I hope things go better. Thanks for the sympathy.
I'll let you know how today goes.
Jo
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Jo, I will be thinking about you. I am so glad they got to you as soon as they did. What do they do to stop the reaction. Do they give you a steroid right at the time. The staff is probably always dealing with that, but we certainly are not.
So sad about your SIL, Jackie. I sure hope this settles down.
Today is that one hour thing for me at school. It is considered a day of attendance and so the school gets money for that. I agree, Wendy, it is hard on working moms and most all moms today do work.
I am thrilled to be a free woman! This has been the longest good-bye on earth, and then I realized I am going to lunch with a bunch of teachers on MONDAY. And then we have book club....so the whole good-bye is kinda not true. Locking the classroom should be interesting. I am, however, ready for my new adventures and my new life.
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Good morning all. Hope it will be a good day for everyone. I'll be keeping my fingers crossed Jo that you have great success with your chemo tx today. Saturday I'll get out and get a card for Paula. Maybe a couple of others will too.....nice to stretch it out a little.
Barnes Hosp. is doing numerous tests and have found a serious heart problem ( don't know the actual nature of that as yet ) so Heidi will have to get surgery to address that issue before they can do anything about the by-pass on the blocked leg veins. Just a good thing that they chose to go there as she needs to be able to function a lot more fully. She is way too young to have such a low level of daily physical activity as she had undergone....almost since she got here due to the PAD. I am thankful to have your prayers and support.
Off to start my work day. I"ll be checking in later.
Hugs,
Jackie
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At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.
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Thinking of you today Susan as you walk through that classroom door for the last tme. It is a big step and a big change but you will soon wonder when you ever had time to work! Congrats on a good career and hugs to you!!!!0
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Morning Girls, Oh what a bright sunny day it is for the last day of school. I am so ready to play now. Susan happy retirement to you. Hopefully you can join us for lunch soon.
Jackie...I am so sorry to hear about your SIL. I hope all goes well for her.I will keep her in my prayers as I do all of you. Just wanted to tell you that I loved the quotes this past week. Hugs.
Rita...glad to see that you are having a marvelous trip. You may need a vac after this trip. lol Busy girl.
Laura.....I will keep Paula in my prayers too. Hoping that they can find a good tx for her soon. A card is on the way.
Jo...good luck on your tx. wishing you no bad reactions
Carol...glad to see that you are doing well and living life. I hope all goes well for your DD and she gets some good news.
Connie...boating season is here!!! I hope your kids have a great summer vacation. No school. Any summer camps planned for them?
Buddy..glad to see that you are getting answers to your rad questions. It is so hard when everyone tx are so different. I had the shorter version of rads. Only 21 tx and 4 boost. It was still way to long for me.
Donna...hope you are feeling better soon. rest is good. I think the laundry fairy needs a vacation, lol
Wendy...looks like a great day for tops down fists up day. Whoo hoo
To everyone else I missed I hope you all are doing well. Enjoy this beautiful sunny day...I know I will. Remember to be healthy...be happy. Hugs to all
BJ
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JO... Sorry!!!Did they put benadryl in first as that is what they do automatically for me for my taxotere and cytoxan? Did you get up at 3 and clean??? This is ok, minor setback but it is goin to be rectified now!!Try to remember this is all goin to heal you!!!
Budders...Now at least you have someone who seems to know and is getting all the info from the path together etc. GOOD this will finally be figured out and the lost time will not be a bother to you in thinking on. This woman DR sounds like she cares too.
Connie.. We go to a privately owned RV place in Warren Dunes..near Union Pier etc. We have good friends who just built where you are and had hoped to call on them, but they are not there this weekend. Hope you go!!Weather may be weird but sun is not my friend right now anyway.
Jackie.. Hope you know your SIL is in my prayers and hope this somehow gets all worked out.This kind of stuff is so challenging as it is not stablized enough to know what is goin to happen next. Be easy on yourself too Jackie!
Susan...YOU are FREE!!!!!Now go and enjoy. Today will be emotional for you and feel so weird when you leave and know it is your last day FOREVER!!!!
Laura...Card goin out to Paula... me too, first time a card goin to Austraiila.
Have a wedding tonight.. and tomm we leave for Michigan. Hope the laptop works ok in Michgian to stay in touch as i can. WED..will be it for treatment and need to feel rested, restored and ready!
Have a good weekend,! Hope all goes well for you today JO!! IT will only get better from here!!!
Donna
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Jackie - I hope Heidi will be okay. That's so awful. I'm glad she is at Barnes.
Jo - OMG... I am so sorry you had a bad reaction. How scary! I hope all goes well today... can't wait to hear from you!
Jezza - I'm glad you popped in. It really is a shocker - isn't it. Do you keep in contact with Leanne from Australia? We've been updating her. The whole situation is horrible. All at a time when she was at her happiest... due to having finally found her soul mate - Danny. Check in whenever you want an update. If you don't have her address, and want it, send me a PM. Take care of yourself.
Budder - I too am glad you'll be getting the path report. Let us know. This rads Dr sounds like a winner.
Susan - FREE BIRD! woo-hoo! You lucky duck! ENJOY!
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The card shower... is SO SWEET OF YOU GIRLS! Paula is going to love it! Thanks so much! --------------------------------------------------------------------
EVERYONE - Hope you can all soak up some Vit D today... don't forget... next time you go to the Dr... get your Vit D level checked! If it's low you need to take a VitD 3 supplement... IT'S VERY IMPORTANT! Paula is back home... she is SO tired of hospitals! Her next tx is Wednesday... fingers crossed that all goes well between now and then.
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Hi Illinois Girls-
Want to play another guessing game? Guess who had another reaction to the taxotere? You guys are so good. IT WAS ME. So, they decided that taxotere was not going to work for me and they felt that A/C would be the next best for me. I did get through that okay, I think the antidespressent medicine made that a little better. I have never taken one of those, but I know I was snoring in the chair after that. (I woke myself up.) I'm still trying to process everything, but right now I need to go to bed. I am soooo tired.
jo
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JO - OH NO! Not again... dang! Girl... you've had a rough start. Hang in there... you poor thing! Get lots of rest... try to have a nice weekend.
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Jo: You have been challenged more than most. Obviously you are allergic to it. I am so glad they did not send you home and got you going with the other meds. Good heavens, of course you are exhausted. The uncertainty would make any one of us exhausted. Just rest!
Well, I signed up for my Summer's Writer's Conference at Northwestern University. It is so expensive and now that I am officially retired, I am funny about spending money. My DH is, of course, encouraging me to do it. I am a "closet" writer and have a 100-plus page novel for young adults and I need the structure of this conference to see things through....even if it means seeing it totally fail.The things culminates with a sharing of my work with others. My daughters love my "book" but they are my daughters and so who knows. It is so intimidating for me to be with people I worry are 100 times more talented than I ...or decades younger or YIKES....both. Yet, I feel I need to do this. I did it parttime last summer and learned so much.
I received the lunch bunch invitation and I am so bummed. I cannot do the June lunch as my niece is in from DC and she and I (and her American Girl doll) are going to the American Girl Cafe for lunch that day. That is another totally odd thing for me to be doing, but this is what she wanted for her "auntie visit". I am not sure if I ever mentioned this but my brother adopted two kids from Vietnam when he was 58 years old!!!! Yes, I can hear you all sigh. He adopted them as infants (not the same birth mother) and so they are now 8 and if we do the math correctly....he is 66! Imagine!
Have a great weekend!
Susan
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