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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Oh sorry YoYo didn't realize that... well what you want is something made of cotton.  I'm sure the local wig store has something like it.

    Actually, here is the link to the TLC Direct item I am talking about... even if you can't order this one at least you can see what I mean.   I have one of these under my wig at all times and, like I said, makes all the difference for fit and comfort. 

    http://www.tlcdirect.org/products/sku-8099__dept-9.html

    Cheers,

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Good afternoon- today was the most "normal" I've felt in 6 months.  DH, DD and I got up, got dressed and went downtown for a parade.  Not a normal Mardi Gras parade, but one put together in honor of Buddy D - a sportscaster for the Saints that passed in 2005, but said he would wear a dress if the Saints ever made it to the Superbowl.  Well the Saints are in the Superbowl, so in his honor - thousands of men dressed up and marched from the Dome through the CBD into the French Quarter.  There had to be at least 5000 men dressed if not more. Men with mustaches, beards, hair all over, tattoos - wearing evening gowns, mini skirts, wigs, makeup - the whole kit and caboddle.   The crowds were huge - it was fun and cancer didn't cross my mind.  My feet are sore from standing for such a long time, but it was worth it. 

    YoYo - So glad to hear from you. Sorry you're experiencing the hair loss.  If you email laurieerickesen@franceluxe.com and let her know you're a breast cancer survivor she will send you a free scarf.  The one I rec'd is 100% silk and beautiful!  I am almost positive this is the correct email address, if not let me know and I'll dig around for the correct one.

    Lilah - so glad you got rid of all that moisture in your rug - ugh!!! But....... like you said the upside is you got some exercise.

    Hope everyone had a great day!!!!

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    OMG Jenn that sounds so incredible!  I wish I could have been there.  What a sight!  What joy must have filled the crowds to have done, via the Saints, this amazing thing.  I am not a football fan but I love the Saints now :)

    Cheers,

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    YoYo - Sorry to hear that you lost your bet with your Onc.   AC does a real number on the hair!  But it is good to hear that you are feeling pretty good,  WBC aside.   I found the AC harder than the Taxol but the good thing is there are fewer TXs and more time to recover in between.   Hang in there, you'll be done soon!

    Jenn - Sounds like NOLA is a wild place this week!   Can't wait 'til Sunday.  I'm glad to hear that you are feeling better... it's about time!

    Lilah - I always love your comments...glad you are addicted to BCO!  I think you should post a photo of your spikey hair post-shower.  HA!

    It is day 4 after my final Taxol and I'm feeling good.   Taste buds are trashed, but that's par for the course, and other than general tiredness I don't have any SEs.  Hair is getting downright unruly!

    Patty

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  • Kim09
    Kim09 Member Posts: 100
    edited February 2010

    Gilly,

    I just have 7 rads to go.  I then start Aromasin.  Time is going so fast that I just mailed in the perscription Friday.  I'm thinking of getting my port out towards the end of February.  I would like to go 3 weeks without having to see a doctor.

    Jenn3 - I will have to actually watch the Super Bowl this year since the Saints made it.  The last time I watched them Archie Manning was the quarterback.  Tells you how long its been since I lived there.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Good morning - sneaking in some BCO time - it's a little slow at work today. 

    Patty - glad to hear you're doing so well all the way through the final Taxol - whoo hoo!!!!  The taste buds will be back before you know it.

    Kim - Wow... how time flies, only 7 rads then you are through!!!! I just finished 5 of 28 (+5boost) and each time I check it off in my calendar - one more down.......

    Hope everyone has a great day!

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty - you devil!  (RE: photo of my spikey post-shower hair)... not sure I'm THAT brave :)  I'll think about it. 

    Jenn -- yeah re: taste buds coming back!  And with the return of my taste buds -- the pounds lol.  I lost like 12 pounds on chemo... have gained back 6.  Sigh.  Now I have to actually go on a diet (to get those 6 pounds off and keep any more from coming)!  I must say, as someone who has always battled the bulge, the one thing I loved about chemo was not worrying about what I ate (since, no matter what I ate, it ran out the other end anyway - sorry if thats TMI).

    YoYo -- how are you doing?  Hope the chemo isn't knocking you back too hard.

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Lilah - you are so funny........... however, I have to agree, during chemo it didn't really matter what we ate - it didn't last long enough in our bodies to cause weight gain.  I have the crazy hair thing going after my showers and when I wake up in the morning too.  My daughter keeps telling me she wants to spike and dye it for the Superbowl, maybe Easter.  Guess all we can do is laugh at the whole thing.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Indeed Jenn! 

    I actually am starting to kinda like this hair.  It does lay flat all the rest of the time, btw.

    You absolutely should let your daughter spike and dye your hair!  How fun!

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    I am waiting and waiting and waiting and still no sign of eyebrows!  Jenn, I think you posted that you are seeing some signs.  Anybody else?   Is it just my imagination or does the hair come in the order in which it came out?  Kind of a "first out, first in" system?

    Kim, congrats on counting down the rads!  Almost done.  And you are whipping through too Jenn!

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty -- I actually had the opposite experience.  Eyelashes and eyebrows fell out last and came back first.  But I also think it's different for everyone.  They WILL come in for you and soon!  I absolutely know it :)

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Lilah - Thanks for the encouragement.  I will tell them that you said they WILL come back...maybe that will get them going.  HA!

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    LOL Patty.  I swear for me it happened in a week.  Between Xmas and New Year's.  At Xmas I was worried people at the dinner I went to would notice (I am a closet BC patient lol)... the next day, it seems to me, I had 5 o'clock shadow on my brows.... bought an eyebrow pencil... by New Year's there was actual hair.  Now I need to get them shaped!  I've never had eyebrows shaped.  Where do you go?

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Lilah -  I'm a closet BC patient too!  I just can't stand for people to feel sorry for me or be worried about me...so I have only told my closest friends and family and a few others on an absolute "need to know".   Which has led to some pretty tricky situations when acquaintances and business associates go on and on about how wonderful my "new" haircut and color are.  Boy are they going to surprised when the wig comes off and my old hair returns.  I'm sure they'll be thinking "Now why did she do THAT to her hair?"  HA!   Anyway...a lot of beauty salons do eyebrow waxing and shaping, also spas.   I'm soooo jealous!  But I heard on the best authority that they WILL come back.

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty - exactly; same here as to why I've told very few.  My wig has bangs so people just think I look different because of the bangs... plus I tell them I had my hair straightened.  If they doubt it, they aren't saying anything and I don't care lol.  I agree, though, when I whip it off and my hair is short -- oh my!  I will just say I got tired of dealing with it.  F em all lol - no one's business.  (Oh sorry hope no one is offended).  I just don't cotton well to the image of the cancer patient who needs pity.  Don't want it.  Just want to do my life, thank you.

    Hehe "on best authority" :)  You mark my words!

    Lilah

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited February 2010

    Hi everybody

    Patty hang in there.  My brows seemd to come back overnight.  about 8 weeks pfc (TAC)  Final Tx was December 1st.

    Navy

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    My eyebrows are growing by the minute - I really need to get them cleaned up.   I go to a little place about a mile from my house - they haven't seen me in 6 months - and when I show up they'll see why..........   Today it's raining so my little short hair on myhead is sticking up and out in all directions - I think it wants to curl, but there isn't enough to curl up yet - LOL. 

    I am not a closet BC patient, everyone knows my situation at work, neighbors, friends, parents at my daughter's school and family.  But........ I am treated normally.  I think if we continue with our daily lives not looking for pity or sympathy people will take our lead.  

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Navy and Jenn - Thanks for the timeline on the eyebrows.   Since I just finished chemo last week I guess I need to be patient.  I'm getting pretty good at drawing them on, but I must rub my forehead during the day because when I look in the mirror after work they are gone.  Thank heaven for bangs!

    I think we all do this the way we feel most comfortable.   Now that I'm done (except for radiation) I really don't care if people know I had BC, so maybe your approach is better in the end Jenn.  It just felt uncomfortable when I started treatment.

    Patty

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  • YoYo44
    YoYo44 Member Posts: 203
    edited February 2010

    Hi All,

    I know what you mean about being a closet BC person (refuse to be a patient).  I have told people at work who I care about and don't want to surpirse and people I work with as well as neighbours and close friends and family.  I don't care if others find out but don't want the generic pity.  If I need them all to find out I will just got to work bald one day! Wink Although it seems unlikely that will happen.  heeheehee.

    I am now almost bald.  My onc liked the wig and had a laugh that he had won the bet.  Neither of us thought he had a lot to lose but it was a good laugh.  Chemo #2 was uneventful and I did not get as sick as last time thanks to increased Zofram.  hopefully the rest of the cycle will go well too.  I go back to work Feb 15 and then will take the week after chemo off each time to rest and recover.  I am sure it will be a whirlwind.

     take care ladies,

    Yo

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    YoYo -- thank you -- that's exactly what I mean.  And at this point, now that most of the hard stuff is behind me (I hope!), I care less about people knowing... but am glad not to have had to deal with the pity party.  Hope the rest of your latest cycle is easy, Yo.

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    YoYo - Glad to hear TX2 is going better!   AC is no picnic but you have such a great attitude I'm sure you'll do fine.  I mean you made it through 14 weeks of Taxol, right?  

    Lilah - No pity parties indeed!  I found that one good thing about not telling everyone about BC and my treatment is that it gave me an extra incentive to be as normal as possible.   So I got dressed every morning, drew on some eyebrows, slapped on my "hairdo" and marched out the door.   (Some days I crept back in a few hours later and collapsed on the sofa....but let's keep that our little secret.)

    Jenn - GO SAINTS!

    Patty

     

     

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty -- WTG!  Yeah I agree.  It was nice to be out at a meeting or amongst people and NOT have to feel like I was sick... just normal, just me.  LOL re: collapsing.  Yeah I hear ya!

    Lilah

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  • YoYo44
    YoYo44 Member Posts: 203
    edited February 2010

    I know exactly what you mean.  When I went to work I was normal and not sick.  It was great.  I am looking forward to that again.  And I am sure the collapsing a few hours later will happen again.  Although I feel less fatigued now than when I was on Taxol.  That was a grind.  Hoping radiation won't be too tiring too as I hear that can cause a lot of fatigue.  But I still have a couple of months before that starts.

    Take care ladies!

    Yo

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    YoYo -- not sure I remember what you are getting now but I DEFINITELY was more tired on Taxol than on A/C.  By the end of the 8 weeks of Taxol I was pretty well wiped out.  Sounds like you are holding up well -- keep it up girl!

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Now that I'm back to working full time and doing radiation I feel like there is not much time left at the end of the day.  I don't get home from radiation until 6p, cook dinner, clean or do a load of laundry and by 7p I'm falling asleep.  Not sure if the radiation fatigue has kicked in or just that I'm getting up at 5:30am - working all day, plus radiation, life, etc.... combination of them all.  I will say that I have been sleeping better than I have in months - it's wonderful. 

    Although everyone knows my situation I didn't get the pity thing - I think in the early days it was worry, but then like I said earlier friends, coworkers, neighbors, etc will tend to follow us in the way that we handle it.  I guess it's safe to say that none of us got or wanted the pity thing.

    Yo - glad to hear you did better with the Zofran.  Remember to listen to your body and rest when you need to.

    Patty - thanks - the city is ready for the game. 

    Lilah - how have you been feeling? You're doing radiation right now aren't you?

    Well - I'm off to get cleaning done and prepartaions for tomorrows big game in addition my daughter is heading to DC for a week with her school.  They're flying out tomorrow, but have elected to skip out on the dinner to watch the game in the hotel room.   WHO DAT!!

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2010

    jenn - have fun tomorrow! We will be watching.

    It is no wonder you are tired. Your body is still getting over the chemo, you are doing radiation, working and doing all that household stuff. Anyone should be tired. Don't do too much!!

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Jenn -- I am not doing radiation.  Because my cancer was only in 1 node, I believe, they did not feel radiation was necessary.  (Or if that's not the reason then some other aspect of my total pathology did not warrant radiation with MX).  If I had had a lumpectomy only, then I would have had to have radiation.

    I'm sure you are tired from radiation but also from simply GOING OUT and doing stuff!  I have found a gradual return of my old energy and it feels great!  But even now, something like 10 weeks PFC, I'd say I'm only at 90% of my old self.  (I'll take it).

    GO SAINTS!

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    I've noticed each day I'm starting to feel a little more normal.  I know that the rads will wear me down towards the end, but have decided I'll deal with it when it happens.  Yesterday I had my eyebrows waxed, today when I looked in the mirror I felt like part of me was back (less the hair).  I've noticed that I'm starting to want to do more, making plans for parades (it's Mardi Gras season), making plans for dinner with DH for our anniversary in a few weeks.  I know there is a part of me that has changed forever, but it also feels so good to have some of my old self sneaking back in..................................

    Today the Saints are playing in the Superbowl - the city is wild............... Hotels are filled with people wanting to party here rather than Miami, Miami if filled with Who Dats!!! It's nuts! Our office (which is pretty well known in NOLA and big) had a tailgating party Friday afternoon - we hired a DJ, had po-boys, Hubig Pies, king cake and everyone dressed (professionally) in their favorite Saints clothes.  Some even decorated umbrella's for second line dancing - it was sooooo much fun. I still can't believe it - the Saints made it to the big game!!!! Wow!!! Geaux Saints!!!!

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    LOL Jenn sounds like that party was a BLAST.  Enjoy the day!  The Saints are already winners.

    Lilah

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  • YoYo44
    YoYo44 Member Posts: 203
    edited February 2010

    Sounds like quite the party Jenn.  Hope you had a great time.  Go Saints! 

    And I agree with Lilah, no wonder you are tired, you are taking it all on it sounds like.

    Lilah, I am on FEC100x4 (Fluorouracil, Epirubicin, like the A in AC, and Cylcophosphamide).  yeaqh, it is not too bad.  yesterday was weird but today was OK.  I stopped the Zofram this morning as I don't need it and my insides don't really appreciate it.  I will be going back to work next monday and am looking forward to it, I think.  I will be taking it easy and will enjoy it but as you say Jenn, it is tirionig at first.

    Take care all,

     Yo

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