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Comments

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    starbeauty, I live in Batavia, where are you N.S.E.or W  Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi Karen, Glad your cousin has kept LE under control.  I'm okay with wearing a garment as long as I don't get full blown LE, insult on injury if something else goes wrong now.

    Hi Ester, reading the material on LE has me concerned and you deal with every day?  From your measurements, sounds like you work hard to keep under control, good for you.  Doesn't sound fun.  My PT said rads can aggravate the LE hence the reason for going back to see her after radiation.  Nice lady, very caring and wants to go the extra mile, I'm glad to have her as my LE PT.

    Horse-n-around, Welcome to a site of amazing women.  They have become great friends.  I'm so excited to get together in the spring for a meet and greet we're planning.  Is that your horse in your picture?  It's beautiful.  Yes, another Sabres Fan, my DH is a bills fan, I try to be a Bills fan but sometimes they are painful to watch week after week.

    Did watch some of the Sabres game tonight, then DS called me and asked (nicely) to turn off the game.  My sister was watching the game and remarked my son might be onto something prohibiting me game watching as the Sabres weren't playing very well.  I'm jinxed.

    Funny Story Today:  My son was on the way to his buddies house to watch the game tonight and stopped to give me a big hug before he left the house.  I was so touched by the moment because teenage boys are tough to open up (more so since my illness).  So I rubbed his head and joked I messed up his hair the same way as when he was a little boy.  So my son runs to the dining room (where I removed and placed my wig after my appt. today) and fluffs the wig commenting he messed my hair up too!!!!  I'm still smiling/laughing as I think about the moment.  Laughing

    Have a great night ladies!!!

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    I too try to be a Bills' fan, but you are right, sometimes it is painful.  The Sabres always seem so committed to winning it is infectious.  Hoping the LE is just a precautionary measure and not something you have to worry about.  Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks Karen, me too!!

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Hi Ladies, Its quiet tonight  did everyone enjoy the beautiful day today?

    Bevin how are you doing?

    Welcome new ladies.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi Betty, Did you forgive me :) You're right quiet tonight, where is everyone?

    Busy day today.  Lots of meetings starting at 8:30AM right through 4:30PM.  They had a lunch meeting but working from home, I don't get the free lunch, just the meeting. (LOL).  Did you recover from your double shift?

    I'm getting a little nervous about radiation. Just another new journey but I'm still nervous.  I did enjoy the day from inside.  I opened all the windows and listened to my cat cackle at all the birds in the bushes.  She went ballistic when my neighbor's cat came and sat on the porch.  She doesn't take well to other cats, dogs or any animal. Today was the weather I love, sunny but not too hot.  I see more hair, I'm so excited.

     Happy Saint Patrick's Day Everyone. Off to sleep, a couple of meeting tomorrow then off-line for the weekend. Yipeee!!

    Maureen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    OK, now I'm worried.  Suppose to do dry run for rads on Monday.  Get a call 1st thing this AM from rads place.  They want to do x=rays and diagnostic CAT scan because of the results of the routine CAT scan.  They won't provide anymore information,  my first question was, did you find something?  They replied, we're on a fact finding mission.  What the hell does that mean?  I kept questioning them but doc if off today, have no further information, etc....  My first thought: they found something, my second thought, they want to differentiate good from bad of what they found, my third thought, this is a problem.  Any of the above is freaking me out.  Have to work for a while today and can't keep my mind on anything, and I hate that dye makes me weird.  Need help here, has anyone had a dx. CAT vs. routine before rads? 

    Maureen

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

      I dont' remember it all but I believe I had a CAT just to confirm I had been marked correctly and so they could program the rads machine and that was it.  I know there wasn't a daignostic ordered by Rad Onco, although my ChemoOnco did do a PET after my treatments were done with her. 

    call your medical oncologist or breast surgeon..... or at the very least your PCP.  all 'critical' findings should be reported, EVEN if the Rad Dr is off, they should be able to get hold of him/her.My RadOnco was actually hiking and called me back when I had a question.... I could hear the cars going by when we were on the phone.  I HATE when you get a call... 5pm on Friday when you know you can't call back until Monday... that's just cruel.  So make some calls, I'll pray its nothing, and keep us posted.

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, I know I Had an X-ray that first day, but no Cat Scan I don't think, I don't remember much from that first marking day as I was scared by it all.  What are they thinking leaving you hanging like tthis, it is barbaric.  Plus it's a weekend, don't they know how anyone would react to the no explanation.  Call your  BS, and talk to him about the state you are in, don't even try to calm down, cry if you can.  You said he is a very compassionate man and brilliant in his field, he should be able to pull some strings.  This makes me so ANGRY that they should do this to you.  Sending prayers and many, many hugs.  Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks ladies, tried all of the above, no luck. I'm going to have to wait till Monday. This pi&&es me off.

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, praying it is a routine, proceedural glitch, and has no connection to a negative outcome. You will be in my thoughts all weekend.  I won't even tell you not to worry and when you get through to that RO on Monday, give him h^**.  Karen  ps stay pissed off, and I hope the weekend flies by.

  • EllieD
    EllieD Member Posts: 14
    edited March 2011

    Oh gee, Maureen, that sucks.  I didn't have rads so I'm of no help other than to say prayers for you and hope you can enjoy this weather and the weekend.  I'm with Karen, I hope it flies by for you.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks Ladies.  I'm just going to enjoy the weekend the best I can.  On Monday, the RO and I need to talk.  Thinking this through all day, (with DH sensible logic) if the RO thought is was something to worry about he would've called me himself.  He must think it's really no big deal HOWEVER, scared me to death, that I need to let him know. This is assuming nothing comes from the CAT scan.  If it does, well haven't thought that far yet, but I'm not leaving without the results.

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, my prayers and warm hugs will follow you through the weekend and into Monday.

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Maureen, I had a cat scan then I did rads.  The tech meet me at southtowns rads.with this borad I had to lay on for measurment.  So yes I had a cat scan before I started rads.  Try to relax until you find out more.  I know this sucks.  You will be in my prayers.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi Kindone,  I already had a CAT scan at the simulation.  They called and requested I didn't eat anything when I came on Monday for the test run because they want to do a CAT scan with the dye.  So pretty sure they're looking at something specific, really has me worried.

    M

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

    Betty, did you have Dr Norland for Rads?  The tech brought me from his office to Southtowns for my measuremnts too!  I thought he was a sweetheart... and almost as talkative as I am!  lol

  • heymoose
    heymoose Member Posts: 682
    edited March 2011

    Maureen, try not to let this take up your whole weekend.  Easier said than done , I know, but I hope you can enjoy the Sabres game.  I am sending you "Strength and courage" to get through this weekend and to complete your rads.  Wishing you good luck with rads.

    I hope everyone is doing fine.  Sending all (((((HUGS and PRAYERS)))))

    Cheryl

    P.S. When we have our get together I will let you know how I received my name - Heymoose. No big deal, just some personal info. and do not want it mentioned.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks Ladies,  freaking out a little today.  Two CAT scans in a little over a week is making me jumpy hopefully for no reason.  Going to hang out and make homemade pasta, do laundry and try to relax. Tomorrow will come soon enough. And I'm trying to think of how I want to communicate my concern to RO.  I'm thinking I'll request from this point forward, if necessary, to have someone call me with the authority to answer my questions or have someone available I can speak to from this point forward.  No accusations, just need to change the protocol.  Or is this a unique situation?  Either way, don't want to be in this position again, no one should.

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, you have today scheduled out, that's good, then sleeping I hope, and tomorrow will be here.  You've done well in a worrisome situation.  On the way to handle if this ever comes up again, I can see doing it both ways.  Be reasonable and give him the new plan of action so this never happens again or let him have it, but I think I favor #2 because you're my friend and how dare he make you upset for a weekend, just no excuse for it.  Best road is probably #1 since you will accomplish the objective, let him know it was really upsetting and make it so it never happens again.  I've been sending calm thoughts all week end and will be thinking of you tomorrow morning, I think your appt. is at 8:00, mine was at 8 also.  I will be checking the boards for you my friend, hugs,  Karen

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Heymoose, Yes I did go to dr Norland for rads, he has since retired.  I Liked him alot, and it was close to my house.

    Mareen, my prayers are with you, try to relax.  Every time I go for a scan or MRI I call Onc office and I make them call for my results or I will have a nervous breakdown.  I all most did a couple of times, when they made me go back into the pet scan so they can have a better look.  Because my tumor markers went up three times in a row, so I was convinced I had mets. 
    Thank God that wasn't the case.  I also call for my tumor markes the next day.  I can't handle this damm disease.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks Ladies, I'll let you know how I make out tomorrow.  Appointment starts at 8:30AM and DD is going with me.

    Karen: Option 1 is last choice but that's what I'll do. I'll be spending a lot of time with them and quite honestly they've been absolutely great to this point.  I think DH is right, it's not a big deal. If the opposite is true, then I'll exercise option 2 cause I don't care what they think (LOL)  Don't know why doing additional testing, hopefully worrying about nothing. Kept myself busy all day today but evening has it, hubby packing for out of town trip, DS working late and DD is doing homework, this is the tough time.  Mind runs when you have time.  I think I'll make banana bread (LOL) Wink, do laundry, do something..

    Love,

    Maureen

  • bevin
    bevin Member Posts: 519
    edited March 2011

    Dear Maureen - just caught up on our WNY thread. I am so so sorry you are worried and the doctors office didn't explain what they were doing and why.

    I can say I had a CT before my RADs. It was to ensure they know where the beams should be lined up etc.  It was done at my planning session along with the tatoos.  I also would get xray every week during RADs tx. They make sure with breast changes from the RADS they are still lined up they way they want to be.

    I hope this is all it is for you. I don't like that the office said they were on a fact finding mission without stating what fact they were trying to confirm or deny. Thats not fair to a patient and I definately think you should say something too.

    Praying you are ok and sending lots of strength your way. I'll give you a call tomorrow .

    Hope you can sleep tonight. try some melatonin or antihistamine or ambien if you can't get your mind to relax and allow you to sleep.

    Hugs

    Bevin

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks Bevin, I am so humbled by all the support on this thread.  God Bless you all. BTW, made the bread, did DD laundry cause I'm all caught up, now that's nervous.

    Maureen

  • bevin
    bevin Member Posts: 519
    edited March 2011

    Starbeauty - welcome to the wny thread.  I just was catching up on everyone and see you joined us.  I am sorry I missed you earlier.

    Ok - so feeling a bit bad I didnt go to the parade today with my daughter. My husband was working so it would have been the two of us. I just didnt feel like dealing with all the people and finding parking.  Boy.. I feel like I am getting old when I say stuff like that. :)

    Did any one make their way there? 

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    I skipped the parade today, shame on me!!  It was such a beautiful day for a parade too!!  Hoping someone went and had a great time.  You're right bevin, parking is a pain downtown.  It was the kind of day would've been nice to take the subway downtown.  Did anyone ever do the park and ride? 

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, am waiting and praying, we are here for you.  Hugs Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi All, here's the scoop.  I went to RO, went for the CAT scan with dye and requested to see RO.  He was very understanding and explained there are cysts on my kidney and liver and he want to CONFIRM they are cysts vs. mets.  It was confirmed they are cysts, GREAT NEWS.  Then I requested he doesn't call on Friday with requests like this and no information as it stresses me out.  He was very nice and understanding and quite cooperative.  I was impressed!  Looks like we're all on the same page.  All that stress for nothing.  Thanks for all  the support during my weekend freakout.  Officially start rads tomorrow but RO is not recommending any cream or anything, is this normal?   

    Love,

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, thank God, such wonderful news.  That was a long weekend for you and it sounds like he will never do that again, you did great!  Make sure one of the nurses or techs give you cream before you leave, I got a little bag with facts about radiation and a few bottles of Radx cream and a few tubes of Aquafor.  Whenever I would run out, I'd just let them know.  I'm so glad it was good news.  hugs  Karen  p.s. they also gave me a specific kind of deodorant, can't think of the name of it, you can also use pure corn starch, like you'd use in baking.

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Maureen, GREAT-GREAT news, thank God, Don't these Drs office know what they do to us.  They just don't think.  So glad to here good news.  I didn't get cream until the end of my treatment, I didn't need it until then.

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