The Leukemia & Lymphoma Society - Fighting Blood Cancers
19 Replies Last post: May 7, 2009 12:37 AM by sha_shelt   1 2 Previous Next
mag7fan1   172 posts since
Apr 3, 2009
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Apr 13, 2009 11:03 AM

How do you cope with hair loss?

Hi Everyone,

My name is Susan and I have AML. I am having  a really hard time with hair loss. I have gone back and forth with do I shave what little hair I left ? The hair loss has been  emotional for me and I feel like I am loosing part of myself.  ( Even though the change is physical it just seems like it is so much more.)  Mom and I went to cancer services I tried to pick out a wig but just couldn't bring myselft to do it. I was a teary eyed mess while looking at wigs.  I lost most of my hair and was pretty bald when I was in the hospital in January. Now it is starting to come back but still not pretty looking. I have been wearing banadanas and I am getting use them. However, sometimes I don't like wearing bandanas b/c they are not as formal. How do you all overcome the emotional idea of wearing a wig?  I am told that with my next phase of chemo that my hair will fall out again. Any suggestions on how to get past the p emotional aspects of wearing a wig and how different they make you look? ( What I mean here is how do you get use to your new look and say goodbye to your old one.) Has anyone else experieced these feelings? What did you do to cope? I am open to any suggestions. Thanks

jordy922   64 posts since
Apr 3, 2009
Currently Being Moderated
1. Apr 13, 2009 2:15 PM in response to: mag7fan1
Re: How do you cope with hair loss?

I was 25 going through RCHOP and losing my hair was terrible but I got through it.  The scarves actually looked cute on me.

When my hair initially started falling out between my 1st and 2nd RCHOP that was what was emotionally the hardest for me.  Waking it up and having it on my pillow, just putting a finger in my hair and having so much fall out, plus the shower was the worst so instead of dealing with that I just had my boyfriend buzz cut it.  And while first I could not believe what I was doing, it made me feel so much better afterwards and not having big chunks fall out was great!

I got a wig that looked just like my regular hair before I lost it.  Even though I only wore the big to more formal events, I prefered scarves.  I knew the wig was fake so I thought everyone else would but they didn't.

I think its just a matter of accepting things and the lose of hair.  Plus I looked at it as the least of my issues!

willowbayfarm   410 posts since
Apr 12, 2009
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2. Apr 13, 2009 4:29 PM in response to: mag7fan1
Re: How do you cope with hair loss?

Hi Susan, I also had a tough time with losing my hair.  I had it cut short in the hospital when I noticed it starting to go, then buzzed it when I got home from my induction treatment so what was left looked more uniform.  I had thick, shoulder length hair before, so it was quite a switch.  I found a site on the internet that sold all sorts of patterns and colors of bandannas at good prices and stocked up on some so I could at least look color coordinated!  I also bought some fleece hats and have layered the bandannas with those, which has been warmer in the winter months.  The Xmas party for my husband's office occurred at a time when I could attend, and for that I wore a silk scarf layered over one of the fleece caps for a little more formal look.

You may not lose your hair again during the upcoming treatments - I have completed four rounds of consolidation treatment and it's still all there, although I feel like the growth was suppressed at various times because of the treatment.  I went into the treatments with the expectation that it might fall out and I would have to start over, and was pleasantly surprised when it didn't.  I never even looked into getting a wig, frankly.  I have been so sequestered for much of the time between the hospital stays and the periods of time when my counts were low that I felt it wasn't worth the bother.  I have only recently achieved a nice "G.I. Jane" look, which is a great improvement over the "Dr. House's face" look I had going on for awhile!  It will grow back, but I think seeing it in the mirror every day serves as a constant reminder that "no, this ain't no bad dream, I really do have cancer".  So it's not surprising you find it upsetting.  I always loved the folks who said, "oh, it's no biggie", and I would think "yeah, it's not YOUR hair"!  Oh, and if anyone tells you it grows back looking like pubic hair, that's just a really, really bad joke. 

cheekycherub   28 posts since
Apr 8, 2009
Currently Being Moderated
3. Apr 13, 2009 4:57 PM in response to: mag7fan1
Re: How do you cope with hair loss?

Hi Susan,

I too, had AML.  I had long blonde hair before treatment and I've always been vain so ya, it was a tragedy!  LOL.  Actually, the falling out part was not so bad.  I was surprised and amused when I developed a bald spot like a 60 year old man.  I felt like Bozo the clown.  Hair on the sides, bald on top.  It was the worst "do" ever!!  At first, I wore caps and then stopped washing my hair completely because it would fall out in the shower.  So...I developed dreadlocks.  I really was holding on to my hair until the bitter end.  I finally went to the hairdresser and had them cut it short. I couldn't bring myself to buzz it off completely. It's not easy for girls to lose their hair!  I know how you feel!!  I had the same experience as you....I went to the wig shop and hated the wigs.  I couldn't bring myself to buy one.  I thought they looked so fake!!  For several months I just wore caps/beanies/scarves.  I never walked around bald - too vain for that.  My kids started calling me "Mini Me."  Ha! My husband was really good about it.  He always told me I was beautiful.  When I was completely bald I really felt like a cancer patient.  I think that's why it was so hard.  I didn't feel normal or pretty anymore.   Anyway, I eventually did go out and buy a few wigs - after my bone marrow transplant.  I bought long and short styles. The shorter styles are MUCH easier to maintain and just as cute.  They are more comfortable and not so hot & scratchy.  (I developed hot flashes after my BMT - because I went into menopause).  There are some super cute styles out there - Rene of Paris makes some of the best wigs IMO.  Check them out online when you get a chance. You can even try Ebay.  I had one wig that I really liked called the "Codi."  It was a layered bob - extremely cute.  I got a lot of compliments on it.  I always wore the synthetic wigs which actually look real - you will fool most people with them.  The only time they look fake is in photos.  (I hate my driver's license pic).  Anyhoo, this too shall pass....my hair has grown back and yours will too!!!  Sending you (((HUGS)))!!! 

Prayers for my Mom, by Nicole   1,169 posts since
Apr 3, 2009
Currently Being Moderated
5. Apr 13, 2009 7:35 PM in response to: mag7fan1
Re: How do you cope with hair loss?

Hey Mag, Well my mom has went bald, 1, 2, 3 x's time, and finally has a buzz grown back:)  How did she do it?  Well for one, she never were a wig.. She actually suprised the heck out of all of us and went bald some days, and the other days she would wear caps, cotton preferably.  She didn't like baseball caps caused they itched, but the soft caps she loved.. hugs, nicole

dawnsie123   150 posts since
Apr 4, 2009
Currently Being Moderated
6. Apr 16, 2009 1:19 AM in response to: Prayers for my Mom, by Nicole
Re: How do you cope with hair loss?

First - get it cut real short.  When it falls out it will drive you crazy shedding all over the place.  You will know when that time will be -when you cant stand it anymore.  Wear whatever you feel comfortable with on your head.  I could never get used to a scarp, wrap etc. Went to quite a few stores before the hairloss to find the closest match to the style and color I had.  At first I had a wig I wasnt comfortable with - then found another - so it took a month or two to settle into ignoring it and not feeling so self conscious.  Like another member here said - I was too vain to not wear the wig.  There also is the adjustment of it growing back again.  At first it appears like it will grow in straight, then surprise curly.  My bangs took months to grow while the rest grew quickly.  I was bald like mini me for about 5 mo's. Then it took me almost another 6 months or more before I wanted to take the wig off.  So, I was wearing it over a year altogether.  I also got a straightening and to add insult to injury, it caused it to thin on the sides.  So I still have hair problems, but its not noticeable unless I tell you.  Now its real short and a recent cut got some of the curly out and I am looking more like me.  Its very traumatic for sure. I keep hoping more doesnt fall out.  Dont get any processing done for a while.  Maybe I had mine done too soon or the scalp was weak, or maybe it could have happened to anyone.  Anyway, you will be surprised how strong you will be forced to become after your experience.  You might say at first - I cant leave the house what do I do and panic, but this too shall pass.  You are still alive and thats what counts.  Enjoy the day, enjoy feeling good while you can.  You might have one down week and two other up weeks.  Plan accordingly to get stuff done on those weeks.  I had R-Chop for non hodgkins lymphoma - the aggressive type.  Stage III but no symptoms.  Now in remission.  I was diagnosed in 3/08.  Ended treatment in July/08.

dawnsie123   150 posts since
Apr 4, 2009
Currently Being Moderated
7. Apr 16, 2009 1:21 AM in response to: dawnsie123
Re: How do you cope with hair loss?

PS - get some eyebrow pencils too - those thin also.

willowbayfarm   410 posts since
Apr 12, 2009
Currently Being Moderated
8. Apr 16, 2009 10:33 AM in response to: mag7fan1
Re: How do you cope with hair loss?

I second the suggestion about the eyebrow pencil, as both my brows and eyelashes got quite thin at one point...although that only lasted for about a month.  I even went so far as to try out a pair of false eyelashes - what a joke that was!  How DO women cope with those things???  I was so desparate at applying them that I gave up after a couple trys.  It was good comic relief, however.

Goddess   17 posts since
Apr 3, 2009
Currently Being Moderated
10. Apr 16, 2009 4:38 PM in response to: mag7fan1
Re: How do you cope with hair loss?

Susan

 

I think the hardest part of coming to grips with having NHL was losing my hair.  It was extremely thick and shoulder length - and yes I was/am vain also. 

 

After I plugged the shower drain (LOL) I told my husband that I had to get it cut - which I did.   A couple weeks later I purchased a "haircutter" and gave myself a buzz cut.   I never lost ALL my hair, but it was so thin you could see my scalp thru the remaining strands.    We had just moved to  SW Colorado from South Texas before I was diagnosed, so I was experiencing my first cold winter in addition to all the other challenges.   I have been wearing beanies I made to keep my head warm.    Here are some positives to losing your hair - I no longer need to spend the 45 minutes to dry and style my hair like before and best of all, I  didn't need to shave my legs or underarms.   I hope that you will get used to the change in your appearance like I did.  Change IS good. 

 

I had my last (6th) dose of RCHOP three weeks ago and my hair is already starting to grow back.   I've discovered that the cute cowlicks my nephews have are really family traits - I've got them too.  It's now about 1/2 inch long and very soft.  I'm thinking I may keep a short style - it sure is easier to take care of.


Just remember that it WILL grow back.   Whether you go the wig route or the scarf route, just hold your head up high and know that you are still the same person you were before, if not a stronger one for successfully dealing with the challenge of having cancer.   You also have new friends that are here to help you who understand what you are going through.

 

Gwynn

cinncy   27 posts since
Jun 3, 2008
Currently Being Moderated
11. Apr 20, 2009 9:04 PM in response to: mag7fan1
Re: How do you cope with hair loss?

This is extremely hard for women. I know I obsessed about it. Like others, I had really long blonde hair. It was summertime when I started to lose it. I remember being in the car and having the windows down and the hair blowing across the dashboard. It would get in my mouth and just made me sick. Not to mention my bathroom. I dreaded getting in the shower and got to the point I really didn't brush my hair. I got it wet and then put it up. I remember starting my chemo appointments and there being a woman there with breast cancer. Since she had Adriamicin, hers went fast. Mine didn't fall out as fast and I remember her being upset that I still had hair. I went to the fabric store with some friends and got fabric to make my own scarves. I matched my outfits. I had fun with that honestly. They didn't work for every situation, so my hairdresser actually recommended a wig store that she used. I went there and got a wig. My boyfriend was so great. He bought me a coach hat, that was really soft and silky. I wore that thing all the time. It felt the best on my head. He buzzed my head when I decided it was time. We had the "last supper" before buzzing it. One last time out with hair. I know that I was very conscious the entire time I was without hair and once it started to grow back. I always thought that people were looking at me or that they were pitying me. I've now learned that wasn't the case. People are usually too caught up in themselves to recognize your suffering. The mirror was the worst, or at night when we would go to bed. It was hard when it was the 2 of us and you wanted to be intimate or when you had to be honest with yourself. Dave was my rock and reassured me that I was beautiful. He said he rather liked it instead of the long hair for a change. It worked. It helped me get through it. I guess we all find our thing that works. I agree with the fleece caps. They were my friend. I did a lot of cotton scarves...and my coach hat. I still love that thing. Remember the sunscreen. Even with clothing on, you are still susceptible to burn...

 

{{{Hugs}}} We're all praying for you while you go through this.

 

Steph

Goddess   17 posts since
Apr 3, 2009
Currently Being Moderated
12. Apr 20, 2009 9:29 PM in response to: mag7fan1
Re: How do you cope with hair loss?

Steph

 

Did you use a pattern for the scarves you made or were they just hemmed squares?   My sewing machine is in storage, but I am tempted to find it and make some scarves.  I haven't yet gone the wig route - not sure if I will...just depends on how quickly my hair grows. 

 

I will be looking for a job soon.  Does anyone have any advice about interviews and hair loss?   Go the scarf route or wig route?

 

Gwynn

 

 

freerangechicken   32 posts since
Apr 4, 2009
Currently Being Moderated
13. Apr 21, 2009 12:33 AM in response to: mag7fan1
Re: How do you cope with hair loss?

Susan,

I had AML and an Auto SCT in '07.  I thought that losing my hair would be horrible, but after the first month I became determined to enjoy the freedom.  Even had a short mohawk for a few hours in order to make my daughter laugh during a hospital visit.  I looked at myself in the mirror and saw my baldness as a sign that the cancer was going away.  I was bald because I was being cured!  After my massage therapist gave me a wonderful scalp massage, I was hooked.  I loved different weight caps and colorful bandanas to keep me warm.  I also used scarves around my neck to give me a little flair when I felt like going totally bald. My hospital has a program that gives all women a wig, but it was just felt too uncomfortable to my scalp.  I have seen many wonderful looking wigs - I just couldn't do it.  Best luck to you as you journey along.   Please don't be afraid to try lots of things and find what feels right to you.     amy

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