Illinois ladies facing bc

Sorry....first quote ( I've used that source often before ) had the dreaded marks.  Fears, well, most of them end up far bigger than the actual event causing such upheaval and distress.  Hang on for the ride Mad though it sounds like such poor advice.  All fears are true ones......but I don't think any of them in the end are bigger than us.  I think I mentioned....first chemo for me...I think I sat very rigid possibly waiting for my arm with I.V. infusion to blow up, turn orange, or for some other instant life threatning  event to take place. 

Down deep inside I think we may still  --  to an extent  --  see this disease as a killer.  It is not.  We still fear the consequences of treatment and how it will go....well, it 'almost' always go far better than our imagined perceptions.  Yes, some things seem unchangeable....we do lose our hair, get tired and sometimes sick.......but all these things have a solution.  They also go away.  You will have to give up some time in your life  ( whatever your Oncologist has prescribed as tx ) to get your health straightened out.  Mine was 6 mos. of tx.  A long time it seemed.....but then I had already lived for 61 years.  6 months up against that didn't seem like so much to ask. 

You struggle and you have maybe some really bad days.  I did.....there were a few days ( not too many ) where I said silent prayers to just make it through the next ten minutes -- but oh the great satisfaction of feeling my strength when I did that.  You are so much bigger and better than your diagnosis. 

Mad....you can do this.  I am touched by your candor about how you see these upcoming events and believe me, I was quite a bonafide chicken-hearted person and was getting all txs and operations etc. 75 miles away from home --- meaning a nice long ride for dread and fear, but I quickly came to see that I needed to let go of that negativism and focus on the fact of doing something positive to restore my good health.....which was in fact NOT going to be restored in any other way. 

We are mountain climbers and you too, in a few short months will stand on the summit and be proud of yourself.....seeing, feeling, and knowing how far you have come -- what you accomplished and that you challenged and became so much bigger than your dread and fear.  Much bigger than you ever thought you could be.  Sometimes, you have to give into what makes you afraid and see that maybe it may not be quite as big as you.  You have a built in advantage...you have tools to fight with and other people to help you.  You can do this....because we will be right here.....like so many others were for us.  What you face alone can be huge and menacing --- but we are here .

You are moving ahead friend.

Lago....the Lemonade powder sounds so good.  I love cranberry anything.  I think it would be the "sweetener" in it I'd have to watch out for....unless it was regular sugar.  In many of the powders....even Chrystal Light, aspartame is used and I react to that.  I get Berry Lemonade at Wendy's as they say it is real Lemonade and is sweetened with real sugar.  Not too often, but a nice treat once in a while. 

Susan....sure would have loved to do that seminar with you. I am easily fascinated by the "ticking" things that life presents. 

Hope you all have a fantastic day. 

Hugs, Jackie

apology for being a little long winded today....I think.

I know it's not the nutrasweet or I would be covered in rash years ago Granted I've cut down but I used to have a Dr. Pepper every day since 1983 before chemo. I have had issues with artificial lemonades before. Usually a sore throat though.

Makmak... hope that you are feeling better today.  Is Gemzar an every day event for 3 weeks straight?  Then one week off.  Gosh, that would keep you busy!  Sure hope that you can avoid the Decadron.  I did not get along with that stuff either.

MDG... official welcome to Illinois.  I think you will make new friends fast and add them to your friends in Detroit.  Alot of us here in the Fox Valley who can help.

Lago... I should have mentioned the skirt/dress issue with TSA.  I no longer wear short or long skirts through security anymore.  I got singled out once along with a lady wearing a sari behind me.  They took us down to a private room to lift up our skirts.  Only pants for me! Have fun at the Cape!

Madismommy... I got pretty worked up prior to my first chemo treatment also.  I took off on a long bike ride all by myself the day prior to my first treatment and even considered NOT ever doing chemo.  The fact was.... I was feeling great and just a bit terrified of what was going to happen.  Well, I came back around and the first treatment was rather anti-climatic... well other than my initial reaction to Taxotere which they were able to control.  The chemo nurses watch you VERY close on your first treatment so they can make any adjustments to keep it comfortable for you.  Take along some snacks, an IPod and a laptop or book and take advantage of some forced down time in the lounger.  Sounds like you DD will keep you looking on the "bright side".  What a sweetheart!

I hope that everyone can find time to get out and enjoy this beautiful weather we are having again today.  I have another session with my LE PT this afternoon.  She gave me lesson in LE wrappings the other day so that I could try doing them on my own.  I suppose I will get "graded" today when she sees me.  Fortunately, I found a good YouTube video to watch while I do it, so hopefully I got it right. 

I took decadron the night before, day of and day after chemo. For me it helped keep the fluid retention down. As soon as I got off it I put on 5-8 lbs. It's also to keep away some of the allergic reactions. Some people get hyper on it and have trouble sleeping.  I did not have those issues.

They should be telling you why you need this.

Well just talked to the pharmacy at my Center... Yes the Decadron is to prevent nausea but it may also be causing the nausea.. So I will be trying without it next week!!! It's tolerable but will substitute a different anti-nausea med for the Zofran and hope that helps!!! It's just an adjustment period and I'm sure once I get it figured out it'll be smoother.. Of course a clean scan in a few months will make it all worth while as well

Calico1....so glad something I said helped Mad and you too.  It is why I stay here after all this time, along with the biggest group of wonderful women anywhere.  Having gotten my diagnosis, I had to move way out of my comfort zone and this blog is the first one I ever posted to and used.  Can't tell you how long I went not able to figure out why sometimes I could see avatars and sometimes not.....anyway......my treasure became the friends I have come to love and respect here and I thank the universe everyday that they took me in....no questions asked  ---  so I stay hoping now and then to be of some use to someone else and lighten the path for them just like it was for me. 

Hope you all have a great evening.  See you in the sunshine tomorrow.

Hugs, Jackie

Lol....I love "whiskey tango foxtrot" it makes me smile!!!!



I got one of my alter ego wigs today....my daughter and I had tears streaming down our faces with laughter. It needs a haircut and it might be cute. I think because it's SO different from me that it's really bizarre....we both had it on....my DH started singing Tina Turner when he saw me....HA HA!!



My daughter named it Grant.....LOL.... Says I look like Taylor Swift's guitar player....who's a BOY with punk rocker hair!!!! Too funny.....



Calico, my PS is in the burbs, out of Edwards hospital and Rush Copley. I went today for a fill and he said I didn't need one!!!! That he wants to let me settle for awhile and decide on if I want about 25-40 cc's more and than be DONE til after chemo and my exchange!!!! YAY!!!! so, no extra pain for me tonight!!!



Mak...one of my prescriptions from Rush is decadron....2 night before chemo....2 day of....2 night of.... It's a steroid right?? I just went and dropped off my scripts tonight, UGH!!!



Hope everyone's doing well!!!!

.

Life is change. Growth is optional. Choose wisely.
- Anonymous

Beautiful, sunny day, and do we ever deserve it!

Wendy, I am usually not out on the deck before 8AM at the earliest, but the little blood suckers are there at all times of day this year. Even worse out in the yard, where I am trying to cut down on the number of buckthorns. Didn't Laura work on this problem last year? They really take over if you don't stay on top of it.

Are these night sweats related to our stage of life? And no hormones allowed now. Black cohosh I think, recommended to me by my gyn, but I did not have the problem. At least I had good luck somewhere along the way.

Joan...lift up your skirt???? Another good reason I always wear pants. Never thought about that one before. Peeping TSA's!

Marina, hope it works for you next week. I hate side effects of Decadron, but did not want to find out how much worse Adriamycin might be, so I had it IV before each tx. Most of all, I hope the Gemzar kicks butt, and gives you those scans we're all hoping for you.

Jackie, loved the quote today.

Have to go think about dinner, so I'll play some more catch up later.

Hi Zap,

I'm not on Arimidex, so I have not followed the current dosing, but most oncs count the time from the date of dx, not the date we finished tx. So dx in August 2006, five years would be this August of 2011. I know there have been studies to determine if there would be benefits in staying on longer than five years, but I don't know if that has been changed yet. Of course, call your onc to be sure. You may get an answer sooner from the pharmacy, but I would still call my onc Monday.

That was so interesting about the Indian culture. I have many Indian doctor friends, and I don't think they feel that way about cancer. I suppose the science outweighs the culture and/or religion.

Morning! Running late but 69 on the deck. Cloudy and humid, no breeze. I can hear the bugs...really creepy!



Susan...you take arimidex for 5 years. Not related to your dx date. I started 8/1/2007 and I will take my last one 7/31/2012. I asked my onc when I saw him a few weeks ago about taking it longer but he said the research isn't there yet so unless something changes it's still 5 years of taking the AI.



Smerf....it may be age related these nite sweats but it's strange that after being in menopause for 6.5 years and on arimidex for 4 years they have gotten much worse, but not every night. Last night...nothing. But then we had the AC on...so I'm thinking it's more the humidity that sets mine off. Black Cohash mimics estrogen so my onc for me said no. I did take this years before my dx, off and on for 3 years as I went thru peri-menopause. It worked very well but now of course I wonder if that triggered my bc???? Don't know and too late now anyway. Interesting tho...DH has been getting up to change his tshirt too but not last night with the AC. And I was fine on vacay with the hotel AC so I'm going with the weather as the culprit.



Happy Saturday!

Lago, sounds like it's going to be a wonderful day!!! Enjoy catching up with your friends!



Wendyk....glad you didn't have night sweats last night, sounds horrible.... Not being able to sleep comfortably is the worst!!



Happy Saturday everyone....my daughter had a friend spend the night so we were up late and than they're up and about again running around, oh the energy!!!! If I could bottle it and sell it....

Good Morning,

Are any of you taking Reclast for osteopenia? My onc wants me to take via IV form, twice a year.

Regardng Arimidex - I was told 5 years from the date I start taking it. Breast surgeon told me that they are starting to extend for two more years. I will see him next month so will ask again.  Will ask the onc as well.

Hope you all have a great weekend. I am going to Ravinia tonight so hoping for no rain.

Right, Wendy. I found the study that still calls for 5 years of Arimidex. I also met someone who was resistant to taking it, and so she started a full year after her txs ended, when her onc finally persuaded her to do it.So it was almost two years after her dx. Some women switch from Tamoxifen to Arimidex, but they are usually younger at dx since tamoxifen is more often used for premenopausal women. Being triple negative they have no benefits for me, and my onc said many triple negs get pretty nervous about that. I try not to think about it, because it is something I can't change.

Hi right back to you, Lago. Haven't posted much, but did see you at lunch, and you looked great as usual. If you are just starting chemo anyone, Lago rocked the scarf!

Doctors can only write scripts for one year ahead at most. Like, I'm on Lipitor, and she gives me 12 refills, and then I have to see her again. It is just a way of getting us in to see our doctors, and being reevaluated to be sure the same drug is still appropriate. If you get a script to be filled say three times as necessary, you must do it within the one year limitation, or get a new one from your doc.

Jackie, I love the reminder about gratitude. I work on that one all the time. Life feels so much better when I concentrate on what I have, and not what I don't have!

Wendy and BJ, my nephew's daughter had a 15,000 platelet count! Only 16 months old, and so scary. They have decided it's idiopathic, and leukemia is ruled out. Wearing a helmet for fear of hitting her head, and actually kind of liking her new hat.  Had any experience with this?

Hi Everyone -- Just popping in to say hello.  WendyTY -- I hope you are feeling stronger every day.  Makmak -- I haven't posted in awhile, so sorry this is so late..... really stinks that you have to be back in treatment again, hopefully the treatment will work it's magic and you'll be back to clean scans in no time! 

I'm enjoying the last lazy weekend of summer... next weekend soccer is back in season, and we will be back to 2 or 3 games every weekend.   My daughter may not be the most talented one on the field, but she sure is the happiest, always smiling on the field, so while I complain about how busy we are it's fun.  

My older daughter just moved on from her tumble and trampoline team to a competitive cheer team.  She has been on the tumble and tramp team for years and years, felt bad saying goodbye to everyone, they have been so nice to me throughout this past year of treatment, offered to do a fundraiser if we needed it, sent cards, etc I will really miss them.  But of course, there is always one person who treats you like you are contagious, isn't there?  I said hello to her (I know her from the team, and from our neighborhood, been to her home many times, kids used to play together all the time..). and she looked like she was going to run in the other direction, couldn't get away from me fast enough.  Oh well, guess this diagnosis really does help you figure out who really cares about you enough to overcome their natural discomfort.     

Boston, must be the place to go this year... my trip is in about  one month, seeing the family, getting in a few last sails before my brother puts the boat away for the winter.  Of course, my brother lives right next door to Salem MA, and we are going in October, so it's a real hoot, Halloween on steroids!  And we'll be through with the allergy testing for my daughters by then....  really really bad shellfish allergy in the family, have had to call 911 on my husband before, so no steamers for the girls until they get the all-clear from the testing.  

In addition to all of the seafood, there will definitely be a stop in the North End for cannolis.   Mike's Pastry here we come!  

Just started tamoxifen this week... so far no side effects, hopefully it stays that way.   

Hope everyone enjoys the weekend, and stays dry, it is pouring here in Downers!