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melinda

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Reply with quote  #1 
I am getting nervous about losing my hair imminently.  What do you say if, when wearing a wig, some one says, "oh your hair looks nice this way."  The other day, I went to pick up my daughter from dance class, and I noticed a mother I have seen coming and going from the dance studio for years.  She had a new hairdo, and it really liked nice on her.  I don't know her well, but thought to myself, "wow, her new hairdo looks nice."  Oddly enough, within minutes i heard her conversation turn to breast cancer.  Turns out she is triple negative like me, on her last treatment of dose dense AC/T, which I am starting tomorrow.  We had a long conversation later that night on the phone, but it got me thinking that had I known her better from the outset, I would have said "I like your new haircut."  And that made me think that I would probably cry if some one says that to me when I am wearing a wig.  How do you handle that situation?

Melinda, triple neg, 2 cm, 1 node with microscopic involvement, lumpectomy, 10 nodes removed, starting chemo tomorrow (nervous, mom died of chemo toxicity)

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Reply with quote  #2 
I would say "Thank you" if somebody pays you a compliment.

I used to explain where I got my shirt etc. when somebody said "nice shirt" etc.....I don't take compliments very well and need to explain lol

I don't do that anymore.....I just say "Thank you"....why not for "hair do"?
I went bald through chemo because I could not tolerate "Fiffy" on my had and got hot flashes as soon as that "thing" was on.....

Wear different styles and enjoy doing that. In the Mall at Merle Norman's they let you try on different styles (I don't know their prices but some cataloges have nice, less expensive ones too).
My DH was wearing the wig on Halloween, I had a blast.
I was bald and in military uniform (feeling sick) like GI Jane, he 'made' me and he wore the wig looking more ragged than pretty (like an aged Rock star lol don't let him hear that)
Anyhow,
I just want to say if you feel well enough, try to have some 'fun' with the styles....who knows.....you might get an idea what looks even more awesome on you when your hair comes back!!!!
(I took it hard to lose my long hair and never would have realized that I look good in short hair too, never in my life would have cut it short....)

Hugs to you!!


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samdah

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Reply with quote  #3 
It is definitely tough, but I focused on the humor of the situation.

Some people asked me if I had dyed my hair to which I responded, "change is always good". I never confirmed or denied it.

My funniest story is when my husband and I went to Massachusetts on vacation. We played bingo at a gay bar. One of the guys touched my hair and said, "this is really cute". I am pretty sure he thought I was a guy in drag! That one still makes me laugh!

It can be a really hard situation, but you will get through it! I laugh because it works for me. I remember all the times growing up when I hated my hair and I used to joke about shaving it off and starting over. I got my wish, just in a round about way.

Gina gave me a great coping  mechanism. I wrote a letter to myself from my hair. It gave me encouragement that it would be back and better than it ever was. And it was!!

Hugs to you!

Sam

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Reply with quote  #4 
Sam, that letter.... I have it in the book. You inspired so many women with that.

Calico! Fifi! I have to add that to the wig name list. My first one was Mrs. Doubtfire and the second one was Natasha.

DEAR MELINDA,
((((BIG HUGS)))))
This is the hardest part. It is freaky and you don't know what to expect. I thought that I would wake up one morning and when I got up all my hair would be left on the pillow. I was also afraid of windy days.
Turns out you start to lose  it gradually. You will find more hair in your brush, and then more hair at the bottom of the shower.
But then your head will start to tingle and feel irritated.
Remember when you were a kid and you had a loose tooth? And you would play with it and wiggle it and it would feel kind of weird, not hurting, but not pleasant either...
Well, that is what happens with your hair.
You have a choice at that time. You can do the Chinese Water Torture of waiting and watching each strand to fall out or you can take over and put YOURSELF in control of it.
So, you have your wig picked out and you get it styled to your style you have now.  You are two weeks out from your first infusion and your hair is starting to shed. What I did is decide that I was driving this bus. I went to the wig place and had them shave my head and then they put my new wig on and did some more styling and I came home.
My neighbor thought I went to the beauty shop and had Japanese Straightening done because my hair looked so smooth and shiny and my real hair always looked like Who-did-it-and-ran.
I couldn't go anywhere without people saying they loved my hair. Was it because they knew it was a wig? NOPE! It was because it never looked so good!
I was uncomfortable at first. I would just sort of mumble and say thanks. I tried to be low-key, but people never knew me looking so well-groomed!

You will get used to it and everyone you know will get used to your new look and stop mentioning things.

Here is the funny part. When I was finally done with chemo and I was ready to ditch the wig, EVERYBODY and their Aunt Tilly came out of woodwork to say "Oh! You cut your hair!"
I would say thanks to some and to others I would say, That wasn't my real hair I had cancer. Since I was "done" I felt OK telling people then.

I finished chemo at the end of December. It is now October. My hair is about 6 inches long and looks great.

You will get over this hurdle-
It is the highest one you have to jump, but of all the things we have to give up with cancer, this is one that actually COMES BACK all on its own - and nice and shiny too!

Hugs,
g


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coco

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Reply with quote  #5 
Hi Melinda,

What perfect synchronicity, to meet someone who has just finished the chemo you are about to start. I'm sure she will be a tremendous help to you throughout your process, and I'd suggest taking your cue from her. She looked great in her wig and you will too! Just remember, there is no neon sign on your head announcing the fact, so when people compliment your new "do" most likely they really mean it!

I agree with Gina: beat chemo to the punch and go short now. I had three friends in tow when I went to the hairdresser who gave me the option of A) shaving my head, or B) a really short pixie. I went for the pixie, which fell out slowly over time, but was a great half-step. However, I would advice you to find a wig first. Check with your local American Cancer Society and ask about their "Look Good, Feel Better" program and see if they offer classes near you. Free makeup, free wigs, hats, scarves, bras (and prostheses in some cases). And the kindest souls imaginable to help you with it all.

Remember, you can do this!

Best wishes...

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Reply with quote  #6 

Melinda,
Great suggestions above! 
 
On another post on No Surrender; Gina, Fancy, Combat Barbie, and a wonderful group of ladies have great suggestions for hair, skin, make-up, and more...
 
You can find it in search, or ask Gina or Nurse Nicky.  I can't remember where all that great information is...might even be on Gina's other site...sorry.  Gina recently mentioned a "Hair Ring", which you could sew your natural hair into the edge of a bandanna hat or scarf.  Brilliant idea for just going out for coffee, or to pick up you daughter somewhere.  The ladies here are full of fantastic suggestions!  

The hair ring, has other ideas for comfort and some are designed for everyday use, in general.  They can be purchased on-line, with the hair attached.  There's a link somewhere here, with beautiful and great ideas for hair.  Gina has a topic on the other site showing you how to purchase, care for and style a wig... and trying on some before you decide.  It's smart to style the wig with your "usual look", so it's an exact match before you cut your hair.  My skin is so sensitive; I couldn't wear one before I lost my hair.  It's remarkable how a "great hair specialist and artist" has the talent to design women's hair to exactly look like it was before you cut it. 
 
I cut my own hair; It took a few weeks, and it was a slow process.  I actually enjoyed the process.  I don't have too many friends where I live, and my family was five, six, hours away.  I cried, I was alone, and the next thing I knew, it became a "project".  A little shorter every time I used my favorite little sewing sharp scissors; I shaved the little hairs in the back of my neck; and when chemo AC/ x 4, 12 wkly Taxol treatments to follow; it wasn't too bad. 
 
I made hats, wore pretty scarves, and bandannas.  I discovered I liked the shape of my head.  I couldn't deal with the wig-stuff. Even hats irritated my scalp.  It's the reson I began making my own hat; everything iteched! why I made them out of soft linen or cotton.  Happy Hats, and they received many compliments; and I don't really even know how to sew. 
 
I am sorry this is so difficult for you.  It was tearful for me, as well. I always had long hair, and still don't know who I'm looking at in the mirror.  I cut it the other day and it was really short.  I just wanted to snip the odd hairs, and I suddenly went snip-snip-snip crazy.  Beauty shops and barber-sgios cause me to have allery attacks. make me ill; must be the odors, or something. 
 
Right now, I look a little like Wendy's little brother, Michael? in Peter Pan.  It's the new glasses.  I didn't notice it until my sensitive DH pointed it out.  Isn't he funny?  NOT.   I threatened to shave half his beard and hair off while he was sleeping.  Wouldn't that be a rude awakening?!!!
 
Maybe an eyebrow, too.   Then, who's laughing?  People can really be insensitive.  Ignore them...hopefully they will get it back in spades, someday.
I know how difficult it is to go through this when you've seen your mother battle this disease.  My mom had Inflammatory Breast Cancer, was quite beautiful, and I took care of her. She had immunity and toxic reactions to the chemo and radiation; but that was in the late 70's and early 80's, and the Oncologists treated most breast cancers the same. Pre-chemotherapy, called neo-=adjutant chemo might be a topic to discuss; it also has been used on tumors "after" they are removed to see if the chemotherapy will work or not.  There are many gentler chemotherapy drugs; , like doxil, abraxance, and others.  Gina and Edge know a great deal about this and perhaps you should pm them about this urgently?  I read there are tests a patient may have done peioe to receiving a full treatment of chemo; it wasn't offered to me, even though I have a severe sensitivity to all medications. 
 
I'd absolutely ask G and Edge about it...I know I read about it on-line, somewhere.  I trust them more than all the Oncologists and Doctors in the world...they have this special quality, rare and true:  called compassion...

 
love,
Indi


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Reply with quote  #7 
Here is the link to our Wig section on the main website:
http://www.nosurrenderbreastcancerhelp.com/WIGS.html


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StacyL

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Reply with quote  #8 
Melinda,
I'm new here. This is my first reply, I read your comment first because the hair issue was the first real wake up call for me. When I got my news on Sept. 18, '08 it was unbelievable. When I saw my onc. Oct. 1, '08 and we decided on A/C chemo 4 round every other Wed., then one more kind (can't remember the name right now) same regimen I felt positive, I'm gonna beat this. Then when I waited on all the test results from chest x-ray to bone scan to ultrasound of my liver, kidneys etc.  to see if the cancer had metastasized, that was a week on overwhelming stress, I had to get on anxiety meds. Then good news, the cancer was only in the breast, it was in a pretty big area, but no where else. I never knew about my lymph nodes, but the first MRI said no evidence of lymph node invasion. I still stayed positive, joking about the upcoming hair loss, got my hair cut from shoulder length to just touching my neck, loved it (surprisingly) I've always had longer hair. I joked "by the time I really get used to it, it will be gone anyway" and then 14 days after my first chemo, I was in the shower getting ready for my 2nd chemo and there it was in my hands, I cried. I knew it was coming, I tried to prepare for it, but you are never really prepared. It hit me like a ton of bricks. I really have cancer. I couldn't "see" anything else to prove it, but I could see my hair in my hands. I got myself together and went on to my treatment, Chad (my fiance of 8 yrs.) by my side, my rock. I got through labs and was waiting in my onc. office when I needed to  look in the mirror to blow my nose. I just ran my fingers through my hair when Chad said "Oh my God, your hair is flying out, hold still." and he grabbed a wad that was in the back and showed it to me. To my surprised I said "I can't handle this", put my face in my jacket and bawled like a baby until my onc. came in. I told her I felt stupid because so many people are worse off than I am and I'm crying over my hair. I now know it wasn't "my hair' it was what it meant. Three days later I shaved my head and have two wigs that I don't wear. I wear hats, a lot more comfortable. It still bothers me to go out. I don't go grocery shopping unless I absolutely have to. Chad has gone a couple of times. I know I'll get use to it. I just don't like to be looked at. Well, I hope some of this helps you. I know it helps me to read about the girls getting their hair back. Oh, one more thing. This morning I was taking my boys to school and the neighbor's dog ran over to our car. We talk occasionally, so when she came to get her dog, she asked how I was doing. I filled her in and commented on next Wed. is my last A/C chemo and hopefully my hair will start growing back soon. She looked at me and said, "hopefully it will get rid of the cancer." I thought, how petty of me to sound like the hair was my first concern. It's not, but it sounded like it. I thank God all the time that I'm early stage and I know I will be ok. So will you, I will pray for you. Wow, I wrote a lot.
Take care.
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Reply with quote  #9 
Hi Stacey,
Welcome to our forum
So glad you found us.
I really related to your story...
The first time I had cancer I didn't lose all my hair, it thinned a lot- I looked a little like an old man who does a comb over to hide his bald spot.
But the second time, it did come out.
I remember using my hand to move my long hair out of my face while I was bending over washing my face in the sink, and instead of it moving it staying in my hand.  I couldn't stand to watch myself lose it. I had ordered a wig and so I went to the wig place and asked them to shave it. I left with the wig on.
When I came home my neighbor was sitting out on his porch and called me over to tell me something. I felt so self conscious. He asked me if I had my hair done. You see, I had really curly hair that always looked messy, but I show up at home with perfectly straight and shiny hair. It was obvious. I told him yes.

When I went out after that I hated how much attention I got. People kept complimenting me on how nice "my hair" looked. I didn't tell anyone but for a few people...

The worst for me was the casual times when I would want to run out and take out the garbage or get my cat or pick some veggies in the garden and not being able to just run out the door because I was bald. I had to put a scarf or the wig or a hat on. What a pain!

But if we fast forward, when I finally ditched the wig, and had short hair, everyone had to say something... all those people who thought I suddenly learned how to style long hair was seeing me with a really short hairdo. Everywhere I went I heard "you cut your hair!"

Now everyone is used to me. My hair has grown pretty well. But I know that the chemo did its job and I may have had to lose my hair, lashes and brows and even nails, but if it meant I  was killing cancer- it was worth it.

Good luck with everything. Please stick around!

Hugs,
g


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Limner

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Reply with quote  #10 
Hi - I am reading up on the site tonight, rambling around. I have an ACS appointment tomorrow night for a free wig.   Let's not forget it is the chemo that makes us bald.  The cancer just wants to use us up and kill us.  
 
Gina - it sounds like our hair is the same - I have messy curly hair, too - I don't ever like to look "polished and groomed" - but the idea of wearing scarves and hats sounds too coy.  I am just hung up on everything.  If I lived in New England, a hat would be fine, but in Florida I would feel like a chubby Ava Gardner wanna be.  Isadora Duncan on ativan.  Just telling you how I feel - I know it is hopelessly judgemental and I have a lot of pre-concieved notions baked into me 50 years ago by my own dear mother.  But the hair thing is huge.   I used to iron and comb mine with a hot comb to straighten it. 
 
So, OK - a free wig tomorrow. As long as it is not itchy and I don't have to spray toxic adhesive on my head to keep it on.  What ever.  My son the artist-with-a-heart-of-gold played the nazi skin head look to the hilt when he had chemo (he is fantastic now, 8 years later).  I would rather have a Raggedy Ann red wig.   But I work in an engineering firm.  Maybe a hard hat.  Maybe a completely alter-ego head of fake hair - sounds like straight and shiny was a very alternative look for you, too, G.
 
First my dog, now my hair.  It is a stripping away to the core.  Glad there is company - Mary


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nosurrender

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Reply with quote  #11 
Mary, when my sister and I were little, we used to put towels on our head or my mother's big scarves and run around the house saying we had long blond hair.

I remember my best friend growing up had long, straight blond hair. She had every Seventeen magazine. One day we put them all out and every model on the cover had long, blond straight hair. This brown eyed curly girl didn't feel too good that day!

Natasha, my wig, was long and blond. Damn it if I didn't get looks from men I never got before - or since - for that matter! People loved my "new look"
It is gone now and my curly girl hair is back- highlighted -
but it is MINE. And I love it.

Here is my hair story.....

Here is Natasha the second month that I had her in June '06 - That is chemo bloated face too!


Natasha in December of '07- still extra bloated from tx


The first time I ditched Natasha and had a wedding to attend in April 08


In July with Susan


In September with Beth at her engagement party


In October an update I posted for Penny


My last chemo was the end of December of 07

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Limner

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Reply with quote  #12 
Thank you BD Gina - I love the way you embue the unwelcome aspects of this experience with some humor and warmth - ie Natasha.  Those pictures are great to see.  I know some people wear wigs as a matter of style and variation.  Is it not amazing the 'power of appearance'?  My Mom wore one as a 'disguise' because she seemed to feel so inadequate otherwise - it was painful to see.  My sisters and I used to put sweaters on our heads and run around with the same fantasy!  We were 4 girls with short short hair.  This free wig I got yesterday is a little too wierd, but I will take it Monday night to the Look&Feel Good event and maybe they can help me with it.  I sent away for a few soft head covers last night, too.  I read somewhere that some orthodox Jewish sects, the women shave their heads and wear wigs once they are married as a matter of -what?  humilty?  I know the nuns used to do the same.
 
The missing factor is not having some women around to make this more tolerable.  You and the women on this forum really fill that gap with your presence and wisdom and love.  It has made a big difference for me.  Empathy.  Wow - it is everything.   Thank you - Mary   PS - Bag of chips - only too appropriate!  M

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coco

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Reply with quote  #13 
Can't get to sleep so thought I'd pop in....
Mary, I remember going to a museum with my son and his class to see an Egyptian exhibit right before I lost my hair to chemo. I remember a docent telling us how the wealthy Egyptian women used to shave their heads and have wigs made of their own hair because of the heat. I loved the image of all those beautiful women shaving their heads for comfort's sake! I remember thinking that little "factoid" was especially meant for my ears, LOL!

No doubt about it, the hair hurdle is a big one when you're on the "before" side of the fence. But I think it's truly the anxiety and the fear of the impending loss that is the worst part. Once you're on the other side somehow it's just not so bad. For a morale boost, check out India Arie's beautiful "I Am Not My Hair" on SeeqPod.com.

I had three wigs: a short "Mom" wig, a medium one (for those indecisive days), and a long bronze-colored vixen wig I called "Roxanne." The former two I have given away, but Roxanne is staying because when she's on my head I can hardly stop laughing and all the waiters call me "Miss"! (She probably hangs out with Natasha when I'm not looking...)

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Calico

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Reply with quote  #14 
Awesome pictures!!!
Thank you for sharing!

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Reply with quote  #15 
G,
How did I miss those beautiful pictures?  You are so pretty!  Your eyes have a deep sincerity and kindness, glimmering Gina.  Thanks for the pictures...a little late, sorry.  Was going through my profile to clean things up and was stunned to see how truly beautiful you are, inside and out.  A very lovely woman.  Thanks for being you!

I love everyone's comments on this post...don't know how I missed it. 

Love,
Indi
Karen1956

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Reply with quote  #16 
Mary - orthodox jewish women - most do not shave their heads - only the very, very far right . I do not  cover my head except in synagogue but a lot of the women do all the time. some with hats, others with wigs - but those with wigs still have their own hair - some keep is very short, others longer.  When they are home and only immediate family (spouse, children), they will uncover their heads.  They still want to look beautiful for their husbands. 
Someone in my synagogue is a 3 year bc survivor. She wears a wig all the time and has since she married many years ago. BUT when she was going through chemo, it was still just as hard on her to look in the mirror and see a bald head.
The covering of the head has to do with modesty as well as in respect to    G-d.  You will notice that many men wear kippot (yarmulka) all the time too.  

Gina - I don't rememeber if I saw the pictures.  Wow - you look great!!!.  Even with the real packaging, I did not look as good as you in low cut dresses/tops.
I had wavy, wavy hair as a girl growing up and by high school I hated it - slept in those great big pink rollers on top of my head through college and stop when Craig and I got together as he did not like me getting into bed with them (not very sexy).  My hair was THICK, THICK and coarse and dark brown. As I got older, I came to like my hair.  Craig has said many times over the years, when we first met in college, he could see my hair before he saw me!!!
I wanted to get a wig like my hair, but I was talked out of it - by a gf and by the wig salon  (they do lots of bc patients) as they both said it would be too much work to maintain.  So I got a straight one and was lighter than my hair (the gal said the darker wig would be too stark against my face) - a beautiful wig - BUT I hated it - it was not me!!.  I wore it maybe 10 or 12 times at the most and since then, it has been sitting on the foam head in my closet (2 1/2 years)!!!  The final straw with the wig  was when I was sitting in synagogue with two women I am friendly with.  The women on the other end asked my friend in the middle how I was doing - she did not recognize me - so that was it for the wig.  I wanted to be me - not some bc patient who looks like someone else. 
After chemo, my hair came in curly and thick but not quite as coarse as before.  I was so happy with the way it looked.  No longer the case.  Some time late this summer is went straight and flat and started to fall out and thin. Hair thinning is one of the side effects of Aromasin. By October it looked so ratty.  My gf cut it for me about 4 weeks ago - it is really pretty, but I cry when I think about it and why I cut it.  One more thing that was taken out of my control. Damn this desease sucks. 
Okay, enough rambling.  Hugs to you.
coco

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Reply with quote  #17 
(((Hugs))) Karen. No doubt, a whole website could be devoted to chemo and hair. I take silica drops to bolster my skin, hair and nails, and I think I remember Gina mentioning she takes Biotin for her hair (I'm gonna look into that). My hair was straight, but grew back in with a serious curl. I'm so happy to have hair again, but it does feel a bit like I got someone else's by mistake! I keep it short; it looks nice and also I'm afraid it may go "Ronald McDonald" on me if I let it grow.

I have also had the experience of being unrecognizable to people. One I had worked with regularly but hadn't seen for about a year. He didn't recognize me and by the time I left I still wasn't sure he knew who I was! The other person was my Primary Care Doctor! They had also lost my file so she thought I was a total stranger. Ugh! Not very confidence-inspiring...

No, none of this is easy. But at least we can come here and usually find someone who can relate to what we're going through. Often, quite a few "someones".

I hope with time your hair will look and feel more like "you", Karen. (After all, that's what we all want. )

BTW, Gina. I was so focused on your beautiful face that I forgot to notice how great the rest of you looked until Karen mentioned it. Your "messy curls" are gorgeous too.

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nosurrender

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Reply with quote  #18 
Ha ha- I don't want to go " all Ronald MacDonald" that is a good one!

Coco- the first time i showed up at my onc's without the wig they all said,
Oh! you cut your hair!
I was like- HELLO??? DO YOU ALL REMEMBER THE POISON YOU WERE PUMPING INTO ME??? Hello... is this thing on???


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jadesloge

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Reply with quote  #19 

My favorite comment is "I didn't know your hair was curly!" My reply, "Neither did I!" I tell them I had an internal chemical perm.


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Reply with quote  #20 
The first time my oncologist saw my curls he seriously thought I'd had a perm.  He told me to tell anyone who asked who did my perm that Dr. M had done it.  I call it my "chemo curls".  It is seriously curly!



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