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Comments

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Good Morning y'all



    Brookside - lol! BDays are good so just go ahead and enjoy...wiggle your way into a new year:) plus more cake more princess time:)



    Janis - yummy cake! Glad you are feeling better:)



    Josie - yeah, dd luvs u:) nice to hear those words. My girl&underarm is still swollen. Have been lightly massaging hoping to move it out of there...now wonder if need to go back to CA for a look see...hummm



    Bunkie - ugh vertigo:( wow you've been so busy in that house...give yourself a break...take a mini vacation...enjoy the sun and flowers:)



    Kate - Ooo who 2 yr anniversary :) celebrate warrior! Soak up the ocean breeze and sunshine...get a trinket or 2:) for photo shoot pin up girl ha!



    GiGil - kiddos are so fun...hope she luvs her bling ring...special Grammie :)



    RunFree - saffron from Spain...nice gift! Miss receiving fresh saffron...my GF retired from airlines so no more direct from source...yummy meals:)



    Sew - yeah, we missed you:)



    Daughters...very special...challenging yes...love forever...gifts:)...



    Luv my hubby:) steady reliable...knock at front door all glass this morning with a smile...I open and he introduces me to another neighbor lol! I'm in my cami and gym shorts finishing my morning me time...hair glued to head, sleep still on face almost ready for my wakeup shower...thank God I brush my teeth asap each morning...timing. Being Mss Gracious Living, I welcome her in with a brief apology...she walks to back windows and looks out over the field of grass and oaks...we chat...she apologizes for chemo brain and not introducing herself sooner...she's cool...hope her chemo fog kicks in...try for another 1st impression later ths week! Note to self...not a good thing when hubby gets up atom early...beware.



    Happy TGIF:)

    (((Hugs)))

    Cindy



  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Just had to share...I'm CA beach casual gal!

    Many moons ago...1st hubby VP large company and I choose to entertain at the beach...on our boat...sailing...windsurfing or camping...very laid back.

    At a black tie event, I wonder up to say hi to a couple who had just spent the weekend with us at beach sailing...windsurfing. The gentleman looks at me with a 'do I know you' look...then says, ' Cindy? Oh, I've never seen you with clothes on!

    Ha everyone turns then he back peddles to explain away...beach...bathing suit...

    Yeah, casual beach gal...but in TX at least I've got some clothes on lol!

    Shower, makeup, clothes, and shoes...flip flood with sparkles and some bling...then a bottle of wine... Hi neighbor!

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited July 2013

    RunFree - I have had this stuff since 08. I woke up one winter morning and the room was spinning. It is a long story but to make it short it never went away. Each year it gets worst. Some of that is because I am no longer as mobile as I once was. I made myself go to the store this morning and a friend drove me. I felt like an accident victim that can not turn their head. Thanks for the concern.

    Brookside - I was thinking that all that basement stuff aggravated it because I have it everyday but not this bad. No doubt that dampness in the basement and moving that freezer/fridge combo out by the guy who took it stirred up some stuff. Opened the windows down there as wide as I could. They are small though. I am staying as still as I can and I took some Dramamine. I may break down and do a half of valium tomorrow if it does not get better. My eye is hurting a bit and my nose running also. That usually means allergies. Guess I am just allergic to life.Laughing

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited July 2013

    Josie, I did not mean to suggest that you might have lymphedea, only that those therapists know techniques that might be able to reduce the swelling.  And as for doctor referrals:  I mentioned to my BS that I could have benefitted from an early referral.  He indicated that he feels the therapists there are so busy working with those who have real problems, that he didn't want to burden them with my itty bitty cording.  In case yours feels similarly and, you, perhaps, do not, I just thought I'd mention the possibility.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited July 2013

    Bunkie, bummer about the vertigo. Especially dealing with it this long. I've had it off and on over the years, and my only remedy other than holding my head totally still and never turning over in bed is to be sure to drink plenty of water. Seems to dilute whatever is causing it.



    Josie...ask for the lymphedema referral. Most MO's and RO's just don't understand it. Waiting 2 years for swelling to go down is painfully long and if it is LE, it's easy to deal with. Just time consuming.



    Brookside....your BS sounds like he was more in to the "I didn't cause this mode" than the "lets help all our patients" mode. They need more LANA-CLT trained PT's than an excuse that you the patient will have to deal with the pain of LE even simple LE because the therapists are busy. If they'd treat people early, chances are it wouldn't progress to a "real problem" stage as he said. Oops.....this must be one of my hot buttons! My PT says they are now realizing that a very large percent of women with SNB surgery and radiation end up with LE of some sort.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited July 2013

    Cindy, your husband sure enjoys his early morning outings, doesn't he?  Oh, well, flash those shiny clean teeth as all the new neighbors are dragged in at the crack of dawn.  Perhaps you could hand out before and after photos, so they'll be able to recognize you at the supermarket.

    I'm also one of those vertigo suffers.  Years ago, I was on disability for a couple of years--could do nothing that involved head movement.  Think about it--no clerical work, looking from paper to paper, no manual labor, such as painting a wall, and certainly no housework!  Eventually, slowly, I got it under control.  I'm still careful, trying not to nod agreement with people and, in a group, I generally manage to sit where I don't have to turn my head to chat with the person on my left or right.  And I never hesitate to ask someone to change seats with me.  One good thing--if I begin to feel a little off, I know my stress level is too high and I can work on that.   The worst lingering side effect:  Clutter.  This thing started with clerical work and I'm really afraid to process my paperwork.  Terrified of filing.  Great excuse, huh

  • beachwalker54
    beachwalker54 Member Posts: 28
    edited July 2013

    Thank you everyone for your support and help with my concerns about new fatigue.  I wanted to respond much sooner but I actually forgot my password, couldn't seem to retrieve it through the site and just waited until i remembered it. I was so frustrated that I forgot it and just this morning tried it in caps and it worked!!  Is there such a thing as "rads brain" lol.  i personally think so!  I did write it down.

    Hi Runfree16,  my fatique did hit a couple of weeks after treatment and I have read that aromasin can make you tired too.  it's a double wammy I guess.  Otherwise no real SE from the rads, just darker skin.  By the way, living on the vineyard is lovely but right now it is too crazy, so much so that year-rounders often want to leave and go somewhere else.  btw, when i saw your pic I thought "that can't be Ellen Degeneres!"  lol  has anyone else told you that?

    BayouBabe,   I agree that the MO's don't level with us about how bad the fatigue can be and how long it can last.  I suppose they don't want to give us any ideas, but I prefer the truth.  After a busy day I often am a couch potato the day after.   On another note regarding what the docs might not tell you; I had some brief bouts of nausea when having rads and when asking my MO about this he was "shocked" and said, "shouldn't be".  "We didn't hit the stomach area so this shouldn't be from the rads. maybe you should check out other factors"  I really do like him a lot but have read on threads that rads can make you nauseous.  Kind of reinforces the fact that that it's so helpful too talk to others who've been in the same 'boat".  thank heavens for this web site!

    Josie123,  thank you for telling me to rest when needed because i am usually very bad at "listening to my body".  those dishes can and will wait as will many other chores that are never really pressing.  A type A personality is not a good one for relaxing or taking it easy!!

    BrooksideVT, until I decided to read more info from the rads posts, I never thought in my wildest dreams that rads fatigue could last even 6 months or up to a year or even longer.  this really surprised me.  I will be much gentler and forgiving with myself.

    I have an appt. in 2 weeks with my MO and will mention the fatigue to her anyway and the possible affects of the aromasin.   I know my appetite has increased and I've put on upwards of 10 lbs. which really stinks and I'm sure I'll hear about that. 

    My RO will hear about the fatigue and the nausea too(in Sept.). Maybe I'll teach him a little something!  I really do love him but still question him not admitting to more long term possible side effects.

    RMlulu,  am so jealous of your workout schedule and your consistency at exercising especially since it is said to help keep the cr_p away.  I will get to the gym today and continue my floor  exercises and do some weights.  wish I loved doing this. Need to try some easy yoga.  I would love to have a dog again to have to walk.  I am in an apt. and am told no dogs, but my brother has a teacup chiauhaua that just had 2 pups and he wants to give me one for my upcoming birthday.  don't know if I should ask the landlady about making an exception for a 3 lb. dog that really isn't like a "real" dog but a little toy.  not sure what to do yet. I do have a cat and she's been fine with that.  Also when having to travel to Boston for doc visits and leaving her for the day, and/or traveling might be difficult.  dogs are wonderful but such a responsibility. 

    justmejanis, thank you so much for the very warm welcome to this thread.  I really appreciate the information from everyone and it helps assure me that I am not "crazy" afterall.  lol

    Wishing everyone a sunny day!!

    beachwalker54

  • RunFree16
    RunFree16 Member Posts: 649
    edited July 2013

    Beachwalker, it is a photo of Ellen Degeneres!  I put a photo of Ellen in because these threads are web-public.  Then later I put up a real photo of me for the good cause of showing a new dress I'd gotten, but I kept Ellen as my profile pic.  Students who want to get on my good side do say I remind them of Ellen, and actually the first time Ellen was on the Tonight Show, many years ago, my dad saw her and said she reminded him of me.  So it's a bit of wishful thinking on my part, but not too ludicrous.  I'm sympathetic about the crowds on the Vineyard, actually.  That can be a big drag.  I think you might as well ask your landlady about a dog.  She might say no out of a concern about barking, but it can't hurt to ask.  My husband and I had many years of annoyance trying to rent apartments when we had our little dog.  I actually had a landlord say to me once, "I just repainted the ceilings."  Huh????  This dog was a Shih tzu and weighed about 15 lbs.  If you do ask, let us know what she says!

    I am astonished at these vertigo stories.  I don't know anything about that disorder, like what sets it off in the first place.  What an awful problem.

    Oh, Beachwalker, there is definitely such a thing as rads brain.  There's an article on here about it.  I'll post this first so I don't lose it, then find the link and post it separately.

  • RunFree16
    RunFree16 Member Posts: 649
    edited July 2013

    Here it is--it is officially about chemo brain, but a number of the women in the study had radiation without chemo.  http://www.breastcancer.org/research-news/20130425-1

    Here's an article from today about a recent study that found cognitive impairment in women who had radiation as well as those who had chemo:  http://www.huffingtonpost.com/2011/12/12/memory-problems-cancer-radiation-chemotherapy-women_n_1143314.html

    I've got another one, but I've lost it.  Shoot.  I'll post that link if I can recover it. 

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited July 2013

    Beachwalker - I missed your posts so welcome to the group from me. I am the one with crazy vertigo right now so not posting much BUT I do have rads brain fog and after 8 months I still have bad fatigue. The brain fog comes and goes. I notice it when I try to talk fast. Like my mouth can not keep up with what I am trying to say. The fatigue never went away for me but does have times when it is worst than others. I just get a good day and go crazy then the next few days rest more.

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013

    Hi girls- I am glad to hear about rads brain- I am DEFINITELY much foggier than when I was on chemo.



    I figured it was just cumulative effects from all the treatments over the past ten months. Good to know there might be an excuse!



    Hugs to all.

  • gigil
    gigil Member Posts: 916
    edited July 2013

    Beachwalker, welcome.  Fatigue lasted for awhile for me.  Sometimes I swear it still rears its ugly head after two years!!  I know now to take care of myself when I start to feel that way. I have had some trouble with my thyroid after rads, which contributes.  The fatigue at this point, and eyebrow thinning is prompting me to get the thyroid checked again.  I firmly believe although they target those rays pretty carefully, lots of people have thyroid issues afterward which affects he overall running of your entire body!!

    RunFree the drive back to the farm is about 5 hours  After talking to my daughter the night my gd was so lonely, it was very clear to me that although she missed her little girl like crazy, she was kind of freaked out about having her home.  She is a sweet and lively little girl who always has a project going.  She is very self entertained, and very messy.  She plays hard in a day.  DD is still getting used to a son who is very laid up and fragile and also frustrated.  I knew that going there and staying and helping is not a good option, since gs seems to act out a bit more when his sympathetic grandma is there, and it makes everyone more tense, including me!!  I went to bed and prayed for a solution.  I did not want to have to take up residence at the farm.  When I woke up in the morning, I heard gd on Skype with her mom and brother telling them that she really has too many new outfits to come back to the farm right now.  She doesn't want to waste them!!  Ha! Ha!  Answer to a prayer.  We have been staying here in the city and having a good time messing up the house with art projects and lunching out with family.  DD and gs have an appointment on Monday to see how that bone is staying in place.  If surgery is needed they might be coming to the city for it.  Meanwhile we will just keep swimming, just keep swimming, just keep swimming (quote from Finding Nemo).  I am getting pretty familiar with kids' movies once again.  Ha! Ha!

    I am going to have to read that article about rads affects on the brain.  I swear I have had no focus for the past two years.  I really have to work at it.  

    Hope you are all having a good weekend.  I think yesterday was national sugar cookie day.  I bought two varieties.  Now I have to find a way to stop eating them.  Gd likes them a little too much too.  When she gets over-sugared, she giggles.  When she is giggling alot, we are in trouble.  Some of those are definitely going in the freezer tomorrow.  Neither of us need many more.  Ha! Ha!

  • josie123
    josie123 Member Posts: 1,749
    edited July 2013

    Gigil,sounds like your having a great time with your gd.When I was little I had an aunt Mitzie that would help my mom out by taking me home with her sometimes.My mother suffered from depression and would get sick and even be hospitalized sometimes.I always had a great time with Aunt Mitzie.She was like a second Mom.This most recent post of yours reminded me of my childhood somehow.

  • josie123
    josie123 Member Posts: 1,749
    edited July 2013

    Hope everyone is enjoying their weekend.Yesterday my hubby and I went on some errands.We had to pick up our most recent purchase which was a Full Xtra long matress and box spring for my dear son who bounced so hard on his current bed that he broke it and the box spring is actually busted too.

    Well,even though he lives upstairs in the attic room

    it never occurred to us that maybe the box spring would be too wide to fit through the doorway going up into the attic.The attic is finished with a nice doorway ,molding around the door and hardwood steps.Well we were pretty desperate to get that through the door so I had an idea.How about we just take the molding around the doorway down.As I watched in horror my hubby starts ripping molding down until he got to bottom by step which the step was in the way.Well he had this bright idea to remove the bottom step.Oops it cracked in half while he removed it.So after all of this we decided enough was enough and we better return the mattress and box spring for a twin Xtra long.So he nailed the broken step in place and away we went to exchange the stuff.Whew, what a day that was.I was exhausted . After helping him lug those mattresses up the steps and remove old ones etc..Let's hope today is better.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited July 2013

    RunFree - Yeah there are some crazy vertigo issues for sure. Just glad to know I am not alone. I was starting to feel Cuckoo 4 cocoa puffs.

    i did get some good news about my mold problem here at this old house. As you know I have been doubting my contractor/friend lately about these problems in my house. The latest one was mold that he claimed he talked to an expert about. He said the glue smell that was bothering me was not that but probably mold in my walls. He said he needed to tear out all the paneling in my rec room and would not know the extent of it till he was done. Add that to the asbestos in my ceiling tiles he found and he had me pretty frightened about my health. I am sure there are issues in here that are aggravating my symptoms and I am going ahead with the get ready to sell stage of my house. That said I called another acquaintance of mine who has redone several homes in my area.  He did a walk through and found no issues with the top 2 floors except the ceiling leak under the bathtub. That has to be addressed but no visable mold yet. Then he went to the basement and looked at all my rooms with a huge flashlight. He had his roommate with him that helps with things too. Neither saw or smelled any visible mold on my paneling or my cement walls down the basement. He said the sealant would cover the glue and the rest of the rooms could be just painted with basement paint. In addition to that he peeled away a piece of paneling. Nothing back there. No mold. There is a defunct bathroom in the corner that does have mold in it and will need a good cleaning and painting to be able to sell. Last but not least my ceiling tiles are not asbestos. Just real old board tiles.  So ladies this house is not that bad and I can get started on the necessary improvements once a Realtor tells me what to do. I will keep my old contractor to finish up what we agreed upon to really be done and then I am going to slowly distance myself from him. Apparently he is trying to rebuild my home and make himself some money knowing I am not knowledgeable about houses. Sorry. Game over.

    This whole thing has taught me a lesson about only listening to a friend about what you don't understand. Going through all I did with my parents dying and then the BC made me very trusting. Too much so. Just like we have to be our own investigators with our health we have to in other aspects of our lives.

  • gigil
    gigil Member Posts: 916
    edited July 2013

    Josie, I always took my sisters' kids in the summer too. They used to call my house GiGi's Summer Camp. At times I had 5 or 6 at a time. I love to just let a kid explore things like cooking, shopping for food, making crafty things, going on hikes and picnics, hitting the playground, seeing fun movies, trying new restaurants, shopping for a fashion statement. I guess I was practicing to be a grandma! Kids are magical! Seeing the world through their eyes is the best!



    Bunkie, that all sounds much more hopeful!



    Josie, what an ordeal!

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited July 2013

    Well, let me be the first to wish you all a good morning and a happy week.  Joan and I have discovered that we both have family in the Westport/Wilton Connecticut area and wonder if any of you ladies would like to join us for a gettogether? Summer weekends might be kind of filled up at this point, but, if there is always late September/early October.

    Kate, I kind of miss your postings.  Hoping you're just too busy rejoicing that this week is your chemo vacation?  And April, I sure hope your asthma is well under control and your nicotine cravings are fading, fading, fading.

  • josie123
    josie123 Member Posts: 1,749
    edited July 2013

    Brookside, sounds lovely I have a sister that lives in Connecticut.I'm not sure what exact town though.

    Probably won't be able to make it though can't really afford the airfare right now and I don't have the time off work but It sure sounds tempting though.

  • katehudson25
    katehudson25 Member Posts: 1,939
    edited July 2013

    Hi Brookside,

    I am at chemo right now, and then I don't have a treatment till July 29 YEAH!

    Blood draw should be any minute then a treatment at 11.

    Thanks so much for the support

    xoxo,

    Kate

  • Belinda977
    Belinda977 Member Posts: 150
    edited July 2013

    Hello!  I am almost a year out from radiation and am fair skined.  My breast is still splotchy red.  Not like the redness at the end of treatment...almost like a permanent skin mark.  Has anyone else experience this?  Thanks!

  • gigil
    gigil Member Posts: 916
    edited July 2013

    Belinda, I have darker skin. It I have tons of moles on the nipple and under the breast that I never had before. I don't have them under the other breast. I still can't use any shower soap but Aveeno.



    Brookside, it is a possibility for me. Keep us posted.

  • SAB
    SAB Member Posts: 1,121
    edited July 2013

    Belinda, I had a dark patch of "tan" for many months after rads but it did eventually fade.

    Josie, I had to laugh (not at you, with you) because it seems like every project we do here grows out of control.  Sorry you had so much trouble!  

    Kate, enjoy your time off!

    Gigi, you sound like a great grandma/aunt.  We just had a visit from my brother with his family, and I agree that there's nothing like little kid energy to make you smile.

    On the other hand big kid energy can be a touch trying.  It's summer study week here at our house, with my dd the younger doing her make-up work.  She's pretty grumpy but we'll get through it!

  • katehudson25
    katehudson25 Member Posts: 1,939
    edited July 2013

    I am half way done with chemo, 9 out of 18 completed today. Tomorrow I have an appointment with my MO, and he is going to schedule CT scans and an appointment with my urologist. Then I will know how much progress has been made. I know there is some progress because my leg swelling is all gone.

  • josie123
    josie123 Member Posts: 1,749
    edited July 2013

    Good for you Kate.I'm glad your halfway done.You've done so well.And the leg swelling is gone too.Great.!!

  • gigil
    gigil Member Posts: 916
    edited July 2013

    Yay Kate! Halfway point and seeing improvement. So glad you are past the leg swelling and worry about chemo and what is involved. Now you can count them down and be done! Hope your news from your MO is good.

    SAB how well I remember trying to get an older kid motivated to get make up work done! Tonight I had a hard time getting a 7 year old to go to bed. We have let her stay up so late. Now tonight when I started mentioning bedtime, she decided it was time to clean and dust. Then she had to braid her hair. Anything to stall. We found out today grandson Cole's leg is not lining up correctly. After a brutal day of the doctor cranking on that poor leg, he threw up his hands and told them they needed to take him to the specialist here in Minneapolis. Poor boy has already had enough misery. Now it will likely be surgery.

    .

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited July 2013

    Kate, such wonderful news about the Betty Grable leg!  Short skirt time!  Or maybe short shorts?

    Gigi, that poor kid!  Would surgery at least give him less time in the cast?

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited July 2013

    Belinda - I am 8 mos out and I am dark skinned. My breast is really about 4 shades darker and still looks...dirty. Like I want to rub all the darker skin off. The nipple is still really sore and if I wear a reg bra it hurts all day.

    Kate - YEAH!!! Half way done and the leg is gone down. I know you are feeling much better about that. Thinking of you.

    GiGil - Yeah I think I have my plan going good. Called a Realtor today. Not sure about your weather but we have high 90s and 100% humidity all week long till Saturday. I am hiding!!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Hi y'all



    Brookside - Happy Birthday!...remember to work it:) make it start early and last :)



    GiGil - were all coming to summer camp:) (((hugs))) for Cole!



    Kate - Ooo who 1/2 done! Great job warrior ....glad it was a short chemo day and you are done for 2 wks...now go play on that skinny leg:) we will be in your pocket for MO and tests! How's the pin up pics:)



    Belinda - just about 12 wks out and skin is still tender pink on incisions or when clothed for long periods some tan bumps...



    SAB & Josie - hang in there...girls luv their mamas ...homework ugh:(...how did our moms do it! Ha must be we were special smart charming angles lol! with clam even hormones:)



    Bunkie - hang on...repairs and renewal...that house will be sold soon and you will be living someplace toxic FREE:). Hope you are feeling better.



    Beachwalker - yoga:) there's just something about moving our bodies lifts our spirits and energizes:) fights fatigue and HT! Pound those bones and build up our terrain...good soil strong roots.



    Janis, Sew, RunFree, Susan, Sciencegal, BayouBabe...Happy Tuesday :).

    Today is Zumba ... Which confrms each week that I'm 60 and my shake your booty and shimmy days are a tad slower...lol in college my roomies did a belly dance for a sorority talent show...yes Port Said! Zumba makes me laugh and think of that crazy routine hair whip and castanets ...laugh with yourself today:)))

    (((Hugs)))

    Cindy

  • SAB
    SAB Member Posts: 1,121
    edited July 2013

    GIGI I'm so sorry to hear about Cole's setback. Hopefully a specialist will be a good change.



    Cindy thanks for reminding me to laugh. That's good advice especially during a bad week!



    Beachwalker I go to yoga twice a week and it is a lifesaver. As an aside I read that the breathing practice and some of the poses help move lymph fluid.



    BUNKIE full speed ahead!







  • katehudson25
    katehudson25 Member Posts: 1,939
    edited July 2013

    Gigil I am so sorry to hear about Cole's setback too. Poor little guy.

    Josie, Gigil, Brookside, Bunkie and Cindy. Thanks so much for the support. Doctor's appointment at 2 today, and hopefully will schedule CT scans and a urologist appointment

    xoxo,

    Kate 

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