August 2013 Chemo Sisters

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  • batcatlady19
    batcatlady19 Member Posts: 138
    edited August 2013

    Sharonannebaker - you can buy a wig clamp, either at a wig store or online. For example, Amazon has a bunch of them: http://www.amazon.com/s?ie=UTF8&page=1&rh=i:aps,k:wig clamp

    They clamp onto a table edge & the end fits inside the hole that's at the bottom of every styrofoam wig head (don't get the suction ones, they never work). Also, use T-pins to pin the wig to the styrofoam for easier styling, they hold the best. I always grab a few T-pins from the office supply cabinet.

    I style & wear wigs for costumes, so I have this stuff already (gee, it's the only thing I *was* prepared for, LOL).

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  • JellyK
    JellyK Member Posts: 150
    edited August 2013

    I'm trying to find out about the free wigs from American Cancer Society, but on their website they only have the TLC catalogue where the wigs are around $100, and the LGFG class for makeup.  They talk about wig banks where free wigs are, but not how to find them :-(  Anyone know how to do it?

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  • SewStrong
    SewStrong Member Posts: 399
    edited August 2013

    Thanks, batman, oh I mean batcatlady. Can't help myself occasionally.

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  • Gashgold
    Gashgold Member Posts: 58
    edited August 2013

    BATCATLADY I had the exact same experience walking into the chemo treatment room.  It seemed clinical, cold and it was full of bloated, elderly looking obviously bald women.  I thought that is what I'm about to turn into...a total wreck in a miserable place, but yesterday when I was there I started to notice the things the nurses had tried to make it better with; the art on the walls and the coloured cushions, and they themselves were lovely.  Still not the Ritz but I'll take it.  The other thing was that all sorts of people were there this time mostly with hair and surrounded by family.  the other thing was when my 19 year old daughter came in she was surprised to see someone from her uni (college) course, same age, there were young men in their early twenties, all treating this like a routine you just have to get through.  And their age killed my feeling sorry for myself!

    I also have trouble coping with how my life seems to have been put on hold and I can't do what I planned.  I've got an oven ordered (two days pre dx) from the uk that is arriving to no renovated kitchen, I dont care about the garden coz I'm scared to use my lymph arm (right of course and I'm right handed), My quilting has stopped because I don't have the concentration and my pile of books has remained untouched, I'm petrified about spending money and going on trips we planned...how come I spend so much time on this forum, other than the wonderful women ?...I cant seem to do anything else.

    Oh and as for sex, CAROL, will we ever feel desirable again?  I mean one woman on another forum described her vagina as ATROPHIED!!!!! Dead and dried up!  (And yes you younger women who are wondering...50 is not too old!)

    It's a real bugger this thing.  I just read on my school mug 'God has given us times of Joy' and I wanted to hurl it out the window.  Bring them on, God, I could do with a dose of joy and so could Batcatlady and all of us!

    ASHLEY: How's things? 

    HVV: Things OK today?

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  • SewStrong
    SewStrong Member Posts: 399
    edited August 2013

    OMG, we have fungus among us. Oh Carol, sorry. I couldn't help myself. Fungus is awful. Maybe while you're getting your counts checked, they can prescribe something for it. My husband had athlete's feet most of our lives until he started drying his feet with the hair dryer. He has not had it since. Maybe that will work for you. Don't use too much heat, maybe just air or low setting. Hope your counts are great.

    Gashgold, hope you're still feeling as good as you were in your last report. I forgot you are Australian and we have a time difference. I guess it really doesn't matter.

    Jelly, what a great idea to think of getting to eat out with your friend. That might help your nerves not get the best of you lie they would if chemo was all you had to look forward to.

    My granddaughter came in, got some clothes (she lives with us), told me she was glad I was drying apples, got the keys and a letter I wrote to her, and started out the door. I said, "Do I have my wig on?" She saw my empty wig head laying on the table, so she said that was the only way she knew. I'm really happy with it. I am buying some of those flat hair clips that little girls wear to hold it down behind my ears. I wear my hair tucked behind my ears, and I am able to do it with the wig. It just keeps creeping out after a while. Those clips are only about 1/4" long, so hopefully, I can hide them under the hair.

    Thanks, Batcatlady, for the wig clamp advice. I'll get them tomorrow at Sally's.

    I will pray for everyone again tonight. I am drying apples right now, and if I pray, no telling how they'll turn out. I have bloodwork tomorrow. I guess it's for Monday's infusion. They can't do it on Sunday, or maybe they'll take blood yet again onMonday and I'll have to wait for the lab to make the TC. I'll know soon enough.

    SAB

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    GAsh, thanks i am doing well today. slight nausea... barely

    Rayna, yes 27th and my sister on the 30th.  Virgo Power!

    Glad to hear my boss say, you've had several years of incredible results, it wouldn't be a problem if you under-performed this year.  I love my work and intend to work hard but not feeling as much pressure helps a lot.

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  • Shalimar630
    Shalimar630 Member Posts: 100
    edited August 2013

    Hey Batcatlady, I hear you. I had my first infusion yesterday. I was hoping the room was not so sterile. It wasn't awful, a couple decent pics, but how about a little wallpaper, some ficus trees, something...

    I already have a funky taste in my mouth. Didn't think it started that soon. Just got back from my Neulasta shot. Stopped by the cancer center and they loaded me up with free hats, sleep caps, a really decent wig and stand. I was also wondering if a balloon put in a flower vase would work..?

    Smooth sailing wishes to those starting today and minimal SE to everyone!

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  • candi07
    candi07 Member Posts: 188
    edited August 2013

    Praying everyone is feeling great and looking great. Its day 5 after my first infusion, getting stronger and feeling normal as each day passes...still a little fatigued. I'm looking forward to the 2 week break before my next infusion. This weekend will be celebrating my husbands 50th birthday I didn't plan anything big as I wasn't sure of my situation, but just the fact that I'm feeling great will be enough for him.

    Hang in there my sweet sisters and be blessed.

    Hugs and kisses to all.

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  • candi07
    candi07 Member Posts: 188
    edited August 2013

    Is everyone staying away from the gym during chemo altogether or just when your WBC count is low? I want to get back into the swing of things.

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  • peace777
    peace777 Member Posts: 71
    edited August 2013

    Togetherness and Lisa,  I had my second chemo yesterday and had my son shave my hair along with my daughter.  I prayed alot about it and followed the Holy Spirit,  He knew when I would be ready.  If I had done it before that I dont think I would have handled it as well.  I started shedding on day 15 of my first chemo.  After showers clumps came out.  I still had enough hair to cover bald spots, unless the wind blew it all over the place.  I cut it on day 22 of my first chemo. I dont really like it but I can deal with it. Im having a harder time getting use to scarves or hats! 

    Hvv you are in my prayers. I hate the feeling of loneliness.  I pray for peace to come over you in Jesus name!!

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  • beeve
    beeve Member Posts: 71
    edited August 2013

    Sharon - glue the styrofoam head to a piece of cardboard that's maybe 12 inches square, then you tape the cardboard to something heavier.  I would recommend covering your head with, at the very least, a knee high stocking, so that as the styrofoam deteriorates, it doesn't mess up the house.

    My hair is falling fast, I'd be surprised if I have 20% left, but the relief of the tender scalp is wonderful.  I've been 'plucking' all day, pinching out lots of it, which also helps with the sore scalp.  I'm looking pretty pathetic, but what are my choices?  It is what it is.

    I'm the artsy fartsy type with lots of artsy fartsy friends and relatives, and I also like making my own gifts and the old 'reuse/recycle' thing.  I'm turning all my old sports bras into reusable shopping bags and I'm going to make paintbrushes for friends from my hair.  I had a link to insert but it's easy to do and a good activity for the quiet days to come.  Google "diy paint brushes"

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  • LisaSp
    LisaSp Member Posts: 253
    edited August 2013

    Hey I just had my head shaved! Grabbed my friend and we went together.



    It was great! The itching and major hair loss was driving me nuts so it actually felt good shaving it off! It's about a quarter inch long now and patchy. Apparently the stubble will go soon.



    SAB, thanks for thinking of me w the wig! But I'm ready w a wig all set. It looks great but it's pretty tight so it bugs me some. Togetherness, know exactly how you feel.



    Jelly, I'm a geek too and love Game of Thrones. Batcatlady are you a costumer? I know what you mean about the chemo room but take a friend and a bag full of stuff to keep you entertained! I go in again Monday so I'll post during infusion...

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  • steelerfan
    steelerfan Member Posts: 8
    edited August 2013

    HVV. I totally agree about holding God's hands! I was triple negative. 2 weeks before I was diagnosed I had a vision of a hand reaching downward from the sky to hold mine. At the time was unsure of the meaning but now I do! My surgeon had prayer as the first point of my treatment plan! Blessings to you!

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  • batcatlady19
    batcatlady19 Member Posts: 138
    edited August 2013

    JellyK - Hah, I love the 'eyemask with eyes' on it idea! I could easily make that. Along the same lines, this Grumpy Cat hat is on my "C-word" wish list for when my hair starts going: http://www.etsy.com/listing/130484556/grumpy-cat-fleece-hat

    Gashgold -- Thanks so much. It's a good point, the place may look/feel different the day & time I go in, different ppl & all. I just have to keep reminding myself how much I do like the staff there...

    LisaSp -- Yep, I mainly do historical costuming, but some fantasy & scifi (love GoT, more the TV show than the books tho). My wig collection has an tall 18th-c. powdered wig, a long Arwen wig, Victorian ringlets, huge drag queen wigs, tons of pieces & falls. Just bought a wig in black with hot pink tips as my chemo style. My mom suggested keeping my hair as it falls out so we could make costume hairpieces :)  

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  • ForMyGranddaughter
    ForMyGranddaughter Member Posts: 294
    edited August 2013

    Today is day 12 from my first treatment . . . I'm starting to lose hair in the nether regions.  I guess things are starting to happen. 

    Inspite of this realization, I feel really good!  I'm on my way to hear a lecture.  Then I'm off work for the next two days, I have to make + label products for my vending event on Saturday.  I'm so excited!

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  • kayezzy66
    kayezzy66 Member Posts: 116
    edited August 2013

    Got a funny story...for my first chemo,i drank so much water ,i thought i was gonna pop.Found out i could take my iv pole to the bathroom.They have signs hanging on the door that says vacant,or occupied.I seen it said vacant,but i was so nerveous,i went to another one,and a lady sitting with her husband,said you can go in it says vacant...i said omg..and this is just my first chemo.But now finished with my 4th,and so glad ...good luck,and god bless all of you

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  • TanyaF
    TanyaF Member Posts: 54
    edited August 2013

    Second round of TC completed this morning. Feeling OK so far. The bad was the steroids kept me up all night so I had minimal sleep. Hopefully this doesn't happen tonight!

    Looks like one of the topics today is the chemo room. Mine is not all that, but I just pop in the headphones and read. 

    Rayna-I loved your hair story! 

    Jelly-You can find out if there are local wigbanks in your area by checking out breastfriends.org. Click on Resources by state and from there you can find out support groups, wig banks, exercise classes, etc. I keep meaning to call about the wig bank!! I plan on trying out a yoga class next week.

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  • carolpr56
    carolpr56 Member Posts: 241
    edited August 2013

    Batcatlady - i had the most hilarious association when you were talking about using your hair for pieces, then FMG started in about her "nether regions"! Can we say "merkin"?!?  You have a most wicked sense of humour, welcome to the group ; )

    MY infusion center is also very sterile, but has little curtains we can each draw around for privacy. _I_ think, batcatlady, you might could create your own little nirvana around your chair (and they are UBER comfortable!). Each time bring something to amuse yourself in a subtly subversive way - like little wind chimes that will tinkle when the nurses move the curtain, or special brownies (do NOT share!).  I myself intend to totally bliss out on the IV Ativan this next time, and have snacks like brie and strawberries. Okay, so maybe not acidic strawberries nor aged cheese but you guys get my drift. An entire chocolate cake.

    Ok, so my appetite is back but my mouth is crapped out from the fungus AND my WBCs were "critical low". 1.2. But y'all know ME, good boy scout, and i had taken claritin this morning against just such a probability so i was ready for my neulasta. Which i got right away, AND obviously I will not go in to the NH tomorrow. I'm going to do personal restorative yoga all day, i think. That and suck on bacon, because I can.

    One more thing - birthday is Aug 31st. 

    Gashgold,  desirable? i have enough attitude in spades that any guy (my age, lol, lets be realistic) would be honored to be blessed with my bald and (eventually) boobless/unreconstructed body. My husband? well, he's new(ish) - only married 5 years and as long as my mouth isn't sewn shut he'll be a happy camper. Gotta get rid of the thrush first, lol, but there's lots of ways to skin that cat. Being sexy and desirable? honey, it's all in our heads. Trust me, lots of gorgeous frigid women out there (the hub's ex, for one, but I digress).

    Check out my new avatar, ladies - you CAN rock that short hair! Plus its doing wonders for my posture!

    Love you all - we're a ragtag group, but like all families we're in this thing together!

    Ladies, we have nothing to fear but fear itself and that is SO true. Fear of the unknown is the mind-killer, don't give in to it. Heed the words of us sisters here who are already in the thick of it, it WILL BE OK.

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  • batcatlady19
    batcatlady19 Member Posts: 138
    edited August 2013

    Hahahhahaahaha, CarolPR56! My galpals have already joked about making me a merkin. I'll let you know if they do it.

    Oh what I wouldn't give for a curtain around the chair in that treatment area. If it can't be pretty, at least make it private. Hey, I just got an auto-text from the pharmacy that my meds are in, Ativan incld. I almost want to break into that one after work, LOL.

    Thanks for letting me vent some. Good luck to everyone who's getting their treatments, & may you have SE-free days & itch-less wigs.

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  • LisaSp
    LisaSp Member Posts: 253
    edited August 2013

    Merkin? Carol you're a firecracker! LOL!

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  • carolpr56
    carolpr56 Member Posts: 241
    edited August 2013

    I'm just well - read ; )

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  • Shalimar630
    Shalimar630 Member Posts: 100
    edited August 2013

    Rock that Carol. Lookin good!

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  • Lindsey32
    Lindsey32 Member Posts: 13
    edited August 2013

    Candi, I have continued to go to the gym. I wipe down the equipment, don't touch my face, use a sweat towel and clean my hands the moment I leave. The routine of exercise really has helped stave off side effects. Best wishes to you.

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  • KateW
    KateW Member Posts: 47
    edited August 2013

    I have to chime in.... Tonight I was venting via email to a friend about my SIL and how she wants me to "save $" and borrow her very light blond short wig instead of looking for one more like my shoulder length BROWN hair... And she email replied " just ask to borrow her merkin too" I laughed and laughed for the longest time. Gotta love friends and humor!



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  • ForMyGranddaughter
    ForMyGranddaughter Member Posts: 294
    edited August 2013

    What's a merkin?

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  • Martie1228
    Martie1228 Member Posts: 73
    edited August 2013

    Carol56: Your hair looks amazing!!! Also, I love tropical sugar-free Popsicles, but I don't want ANYTHING red after my first dose of Adriamycin. Just sayin'! ;)



    I already know that I won't be a very attractive bald woman as I have a pinhead and giant ears that stick out (think satellite dishes!). I've stocked up on different head coverings, though. A friend is going to come by Friday night to shave my head - though we will do various creative cuts before the finale! I'm hoping to have a glass of wine, but started getting some mouth sores tonight. :(



    Sharronannebaker: What is the recipe for the mineral broth?



    Shary: Praying for you! I've had headaches as well since first tx. Coupled with the nausea/vomiting of the first three-plus days, I really couldn't imagine doing it again! (And I'm on a dose-dense regimen at age 57.) So thankful God has encouraged me through His Word and His people! Continue to have various SEs, but as Isa. 30:15 says, "This is what the Sovereign Lord, the Holy One of Israel, says: 'In repentance and rest is your salvation, in quietness and trust is your strength.'" These days in which we are forced to rest is not only good for battling our cancer, but is good for our souls. :)

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  • gildedcage
    gildedcage Member Posts: 139
    edited August 2013

    Hey All - 

    Starting chemo on Tuesday of next week. After consulting with 2nd and 3rd opinions I decided to go with TCx6 instead of the ACT. My oncologist is fine with it and I'm hoping to be done with chemo by the end of the year. I'm a little anxious but mostly ready just to move ahead with it and get it over with. I'm sick of thinking about it. I decided to try out the cold caps and this is the part that is giving me the most anxiety. It's a lot of try to manage while dealing with chemo. My plan is to get an Ativan and let my husband take over with the caps. If they don't work, no harm done (except a cold head and a couple grand out the window) but I'm just trying to surrender to what will be when it comes to that. Having been a frequenter of nightclubs for most of my 20's and early 30's, I've got about 10 wigs sitting in a hatbox in my closet I can pull out in a pinch. One is a Bettie Page style and very cute. Another is kind of a pageboy style. Just cause I've got chemo going on doesn't mean I can't be cute. :)

    I got the Lupron shot last week to protect my ovaries during chemo (hoping to be able to get pregnant naturally someday in the future) and I've been extremely tired the last couple of days, likely from the shot. I'm trying to give myself permission to do nothing but watch Netflix and putter around the house. It's actually been pretty nice. (BTW, if you haven't seen Orange is the New Black on Netflix, you must. So entertaining!)

    I've been reading through the posts here and I just want to say that I so admire you all for your strength and support of each other. I hope I can be a support to you as well. 

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  • Martie1228
    Martie1228 Member Posts: 73
    edited August 2013

    Thanks, Lindsey32. For the gym response. I was wondering.



    Formygrand: I think our lack of understanding dates us. ;)

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  • gildedcage
    gildedcage Member Posts: 139
    edited August 2013

    Formygranddaughter - a merkin is like a toupee for your pubic area. Hee hee.  

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  • KateW
    KateW Member Posts: 47
    edited August 2013

    No ladies you are not dating yourselves! If it were not for my crazy friend, I would know nothing merkin-ish :). A merkin is basically a wig for your "nether region." I KNOW! Who would have thought?!

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