Illinois ladies facing bc

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  • determined3
    determined3 Posts: 41
    edited April 2011

    okay,  i just got my wig today and it does not fit/feel right. i got it from ACS.  do i need to wear something under it? also, someone once mentioned about body glue. i live in the chiicago area and it was windy as hell yesterday. i could barely keep my cap on and i still have hair. i will start chemo tomorrow. so,.................trying not to panic......trying to breathe, but HELP. OMG what the hell am i going to do! thought i was proactive by getting started now, but man. okay, help please...seriously.

  • lago
    lago Posts: 11,653
    edited April 2011
    Determined,  You can exchange from the ACS I believe if the tag is still there. Did you order online or actually go see them on Michigan ave? If it's too big and you still have hair it will definitely be too big when you have no hair. You might need a smaller size. If you can find the time go to ACS at:

    225 North Michigan Avenue #1210
    Chicago, IL 60601-7833
    (312) 372-0471

    They may even have one in stock that you can walk away with. Also they may be able to recommend resources to get it to fit better. There should be something in the back to tighten it. Also I work a wig cap under mine because I found it itchy.

  • determined3
    determined3 Posts: 41
    edited April 2011

    okay, lago after reading your response, i should say that it is too small! too small. is it b/c i still have my thick hair??? just wondering and trying to prep before i have NO hair! where did you get your wig cap?

    and how did you know which size to get. i have a large head..so i got the biggest one. okay, thanks in advance for responding!!!

  • smerf
    smerf Posts: 476
    edited April 2011

    Hi Determined,

    It is hard to tell about fit until you lose your hair. If you are wearing a wig with hair the wig shops sell you a kind of skull cap that keeps the wig in place. Otherwise it will slide around  and never be stable on top of your hair. I went to a wig shop before I started chemo, and they had me try them on with the skull cap, and told me my hair would cause it to slide some. If you could go in person, maybe someone at ACS could help you with sizing. Also, if you really like it many wig shops can do alterations on it.

    Don't panic, we are all here for you!

  • lago
    lago Posts: 11,653
    edited April 2011

    You really don't know about fitting till the hair is gone. You might be OK. I did get my wig cap from ACS/TLC online. http://www.tlcdirect.org/  But remember if you don't need one then you probably won't wear it. I went through chemo in the winter. In the summer you might get hot with both wig and cover. Check out this page:
    http://www.tlcdirect.org/subcategory/SwatchRingandWigNecessities.html?  

    The wig thing was always the most confusing part of this journey for me. Maybe that's why I only wore it twice and stuck to scarves.

  • ATeamNana
    ATeamNana Posts: 224
    edited April 2011

    I used old bobby pins and those little clippy things to anchor my wig to my hair when I still had some. I mostly wore scarves and ball caps because the wigs bugged me.  But I did wear them for awhile.

    I have some men toupe strips that stick to your head when hair is gone...I have several unused ones if you would like me to mail them to you just send me a PM and I'll be glad to pass them your way...

    We did get some sunshine here today also....Yeah....just keep it coming!

  • LisaMomOfFour
    LisaMomOfFour Posts: 226
    edited April 2011

    At Naturally Yours in Willowbrook, they sewed the wig to fit my head, so it is about as comfortable as a wig can be, and feels very secure even in the wind.  They are costly, but insurance covered most of it for me (BCBS of IL), so my outlay of cash was very modest.   They also did a nice trim so that the bangs wouldn't fall in my eyes, etc.  I have gone back again when I had trouble cleaning it and needed another bang trim, as we didn't go short enough the first time.  That visit was free.  They are wonderful there. 

    They sewed the wig on the day I had my head shaved.  I was too lazy to deal with the mess of my hair falling out in my house, I'm not much of a housekeeper under the best of circumstances, so my housekeeping skills while on chemo were rather suspect.  Thank god our nanny helps me pick up after the kids or we would be featured on Hoarders.......

  • LisaMomOfFour
    LisaMomOfFour Posts: 226
    edited April 2011

    Oh tonight was the variety show for my twins -- so hysterical.  One of the twins looked terrified to be up there playing her violin.   The other twin took extra bows at the end of her song, and they needed a hook to get her off the stage.....So much for nurture over nature....    

  • lago
    lago Posts: 11,653
    edited April 2011
    LisaMomOfFour that's interesting regarding Naturally Yours. When I went back to get a trim I told the gal I felt the wig felt too big and puffed up in the back. She said it was fine. Then I noticed as I was up front looking at scarves she left for the day. Guess she was in a rush to get out of there. I definitely felt she wanted to go home. Ticked me off be cause I was coming all the way from the city. Maybe that's the other reason why I never liked my wig and only wore it twice. It didn't fit properly.
  • illinoislady
    illinoislady Posts: 46,506
    edited April 2011

    What nature delivers to us is never stale. Because what nature creates has eternity in it.
           - Isaac Bashevis Singer

  • hopefulhealing
    hopefulhealing Posts: 581
    edited April 2011

    There are two Determined here now. Determined which is me and a Determined3

  • lago
    lago Posts: 11,653
    edited April 2011

    Oh right, I was talking to the other one Tongue out

    Is this Determined name thing going to be like figuring out which Catherine in Wuthering Height? Wink

  • smerf
    smerf Posts: 476
    edited April 2011

    Okay, that could be confusing! Are you in Illinois, Determined?

     Lauren, back to the wig issue....you looked smashing in your scarf! Haven't seen anyone better, in fact, but I had more trouble wth my scarf falling off than with the wig. I guess maybe the fitting is important, because my wigs were very comfortable and stayed on my head. I had fun with the wigs, and had two...each a different color and length. My own hairdresser cut the wigs a bit at no charge, and offered to shave my head if I wanted, also no charge. I had my DH buzz off my hair when it started to fall { come to think of it, no charge either!}

    Anyway, determined3, I think you will find what works best for you with a little trial and error. Please don't get discouraged, because you will find your comfort zone.

    Hugs to you.

  • lago
    lago Posts: 11,653
    edited April 2011

    smerf it was all in the cosmetics and bling that made me look good in scarves… and I tried to smile a lot Tongue out

    I did find that cotton scarves did stay in place better than even my rayon ones. Forget silk or slippery type fabrics. They won't stay on. I also could not wear the pre-tied scarves because they were too big, even the adjustable ones never stayed in place.

  • IllinoisNancy
    IllinoisNancy Posts: 99
    edited April 2011

    Hi Ladies,

    Do any of you know how to get out of a depression?  I wake up every day feeling so down and worthless.  I think about cancer all the time.  Nothing makes me happy anymore.  I can't go back to work and I can't stand to be home alone.  I have never felt so desperate.  For the first time in my life I understand why people kill themselves.  Do you think there are meds that can help me?  I have been on Effexor for over a year but it isn't helping at all since my second dx.  I am seeing a shrink on Tuesday and I hope she can turn me around.  I read about women who are in stage IV and they seem happier than me.  My onc, bs and ps all told me I have hope for a future but I don't feel that way.  I'm sorry to be so sad and depressing but I don't know how to get rid of it.  Please help me?

    Thanks,

    Nancy

  • scrap2book
    scrap2book Posts: 276
    edited April 2011

    Nancy

    I can totally relate to what you're saying In fact, I fell that I could have written most of what you said in your post, word for word.  I had another pet scan yesterday and probably won't get the results till May 10, so that doesn't help much either.  Used to take Efflexor, but it made me so nervous at night that I couldn't sit still or sleep.  I'm still working, but don't know how long I can keep doing that.  I don't know what would make me happy either.  Good luck to you and keep in touch!

  • lago
    lago Posts: 11,653
    edited April 2011

    IllinoisNancy this is not as unusual as you think. You are doing the right thing going to see a shrink. S/he can better answer if there are meds that will help. Are you on any form of hormone therapy (like Tamoxifen or Arimidex)? These drugs can also make you depressed. If you went into menopause that also can make you depressed… and yes they have many drugs out there to treat depression.

    (((hugs)))

  • hopefulhealing
    hopefulhealing Posts: 581
    edited April 2011

    IllinoisNancy I have felt exactly like you which is so scary because that is just not the normal me. But we have been though so much. It is hard to get "joy" back. I know what my blessing are and they are many and the things that really count. I can't shake it either. I think for all of us it is a combination of things. The surgery I had BMX,  all the reconstruction and what that entails, the change in our intimacy, the fears that are normal and can overtake us sometimes. I am on Tamoxifen and I am sure that plays into it.  I am glad you are talking to someone. I always say "Courage doesn't always roar. Sometimes it is the quiet voice at the end of the day that says I will try again tomorrow. "

     Sometimes it is a matter of just getting through this day with the hope that tomorrow might be a bit better. I think when I exercise that helps. My best friend has breast cancer too. She had it 1.5 years before me. She helps to be able to vent to. I also attend a Mastectomy Support Group. Is there a group like that or a Breast Cancer group if you didn't have a MX you can go to. It is so helpful to talk to women who truly understand. She told me once when I was saying I was so tired of feeling so sad .......  She said she allows herself to cry and feel sad and then forces herself to do something.

    I don't know what will work best for you. But be gentle with yourself please.

  • makmak
    makmak Posts: 374
    edited April 2011

    Hi to both Determineds!! Welcome to our very chatty and wonderful thread!!

    I did wear wigs.. and I got 4 of them..in different styles and every color!! I got my first one online through ACS, and it's OK.. it's a bit too big and not as stylish, so I wore it for walks and to play with the baby and didn't feel bad getting sunscreen and bug spray on it.. My second one I got at a place I HATED and Insurance did not cover it.. Then I listend to Susan, (Zap) and went to Jerome Kraus in Skokie... I loved my experience there.. Got the wig that you all have seen and they altered it on the spot to fit my head.. They also threw in all the styling products. My insurance covered it.. BUT I had to call and pre-arrange it as they are 'out of network' for me.. I also found another one I liked there and ordered it online.. It's my "Fun" blond wig which I wore on our vacations..

    I did get a bunch of scarves but I felt too self conscious in them but did wear them on vacation as the wigs were way too hot by the pool.. I also ordered some caps from the ACS site Lago provided above and wore those in the summer around the house...

    FINALLY a nice day out.. so we've been spending most of it outdoors.. Off to a dress fitting for the prom dress later today.. Hopefully everyone is enjoying their day!!

  • determined3
    determined3 Posts: 41
    edited April 2011

    hi lisa,

    i have the same insurance, but hmo. they told me that they don't cover it. how did you get yours covered? did your doc write it a certain way? do you have ppo? 

  • determined3
    determined3 Posts: 41
    edited April 2011

    hi determined!

  • determined3
    determined3 Posts: 41
    edited April 2011

    hi makmak. where is jerome krause? is it a salon or a person. i should be able to google it. and, how did you get your insurance to cover it?

    by the way, had my ac today, first one!

  • hopefulhealing
    hopefulhealing Posts: 581
    edited April 2011

    HI Determined3  I hope your chemo goes as well as it can.  I get tired of our Chicago wind too! I will be thinking of you

  • determined3
    determined3 Posts: 41
    edited April 2011

    thanks determined and others! i am doing well....considering. had the first ac today and i am trying to drink, but i feel like my belly is full and i may be over doing it. i just don't feel like feeling 'sick', if you know what i mean.

  • lago
    lago Posts: 11,653
    edited April 2011
    determined3 I too got my insurance to cover it. It was a PPO though. My PPO covered up to $500. Your onc has to write you a prescription for a cranial prosthesis. Then call your HMO with the code number (get it from you onc) to see if they cover it.
  • zap
    zap Posts: 1,850
    edited April 2011

    Well, I am in Holland, Michigan.  Lots of fun places to visit. I am looking for exotic tulip bulbs for my dd and sil new  house.  Everything here is about Holland and it is getting to be a bit much.  Like who wears wooden shoes or has a windmill in their back yard? So they sell black tulips bulbs,...the only flower in the world ( I think) that comes in black. If anyone knows of another, please let me know. 

    Jerome Kraus is in Skokie on Crawford Avenue.  It is a very straightforward place and is not a salon.  They cater to people with cancer and the many female orthodox Jews in the neighborhood who wear wigs for religious reason.  When I say straightforward, I mean they are businesslike about preparing you for the wig and they shave your head right there.  Because they were so businesslike, I felt all business and got through it all spendidly without emotion.  That is what worked for me and DH.  What also worked was that they fashioned me with an absolutely beautiful wig.  Having whitish hair, I needed to spend bigger bucks as I needed to feel i looked like my old self.  In fact, I looked better. My insurance rejected the benefit, but I was foolish and should have resubmitted and fought for reimbursement as I hear from other women that that works the second time around.

    I think we will get used to the two Determineds as we get to know them better; unless one is less determined to keep the name Wink

  • determined3
    determined3 Posts: 41
    edited April 2011

    thanks lago. i am wondering if it is b/c of my  hmo......grrrrr. this is crazy. anyway, are the meds supposed to 'tame' nausea or it is supposed to get rid of it totally. i am trying to figure this out.

  • determined3
    determined3 Posts: 41
    edited April 2011

    hi zap.....sorry determined, please share with me..i can't change my name b/c my name is keeping me afloat..lol. 

    so with the place is skokie, you have had no problems with your wig fitting properly? is there one person you would rec or should i just give it a go?

  • lago
    lago Posts: 11,653
    edited April 2011

    Determined3 it might be your HMO doesn't cover but as soon as you say wig they will turn it down. You must have a prescription from your onc with the proper coding. I called my insurance company before I went to the wig place to be sure.These wig places charge a bit more since they are full service.

    Naturally Yours (Willowbrook) also works like Jerome Kraus as does Second Act (north side in Chicago). All these places work with cancer patients. Naturally yours also had all sorts of hats, scarves and breast prosthetics too. They will submit to your insurance. It's a full package like Zap and Makmak mentioned. Styling, shaving etc.

    Talk to your onc then call your HMO again.

  • determined3
    determined3 Posts: 41
    edited April 2011

    thanks lago. is that your hair in the pic. no matter what.. you look pretty:)