Hurting over hair loss

NisaVilla

I am freaking out watching my head frequently,and waiting to go bald. It has been 12 days since chemo and no hair loss yet. One day my head is burning hot. The next is fine. The next Inhave an "ant crawling" feeling, and the next nothing. And deep in my heart I keep hoping and fantasizing that perhaps not everyone goes bald although I read/heard it so many times that my cocktail means a 100% chance that I will.



Did you have trouble accepting the inevitable? Have any words of wisdom to calm my anxiety and sadness? Thank you!

Janetanned

NisaVilla -  I'm so sorry you have to go through this!  BC sucks!  What chemo are you on?  Some are more harsh than others. 

For some women, hair loss is very difficult.  I found it to be not as terrible as I was expecting it to be.  I prepared for the inevitable (AC/T).  I took my daughter wig shopping before I needed one and bought a practical style that matched my normal length and color.  I also bought a different style and color to have fun with.  My daughter referred to it as my weekend head. They were synthetic wigs that did not cost too much.  I also bought a variety of head covers (hats and scarves).

When my hair started to fall out, shortly after my second tx (16 days), I had my husband shave it all off.  It was strangely liberating.  My husband was much more upset than I was.  While I would not chose to be bald, it was not that terrible.  I wore my wigs in public and no one knew what was going on with my health and no one knew it was a wig.  My co-workers were shocked when I told them it was a wig.  Everyone assumed that I got a haircut.  At home I usually wore a cap or scarf or nothing at all.  My young adult children thought it was somewhat amusing to see their mom hairless.  I think they understood that I was fine with it so they were also okay with the situation.

My hair grew back with no problem.  I needed the wigs for about six months (January - July).  I began to go topless this time last year and now I have a full head of new fresh hair.  I am almost to the length I was before chemo.  For me, hair-loss was a very temporary problem that was easily tolerated.  I was much more focused on getting the cancer taken care of and my health back on track. 

Try to keep positive and focus on the future.  You will get through this a stronger person!  Maybe even have a little fun with it!  Get some interesting wigs and hair covers.  Try out a new color or style.  And just think - no shaving or waxing for a few months!  This too will pass.

Good luck!

NancyHB

NisaVilla - Not everyone loses their hair.  It depends on the chemo regimen.  Is hair loss one of the SEs of your chemo?

When diagnosied I had been growing my hair for a couple of years, and it was the longest it had been since I was a child.  The day before my first chemo I had it cut into a super-cute cut to minimize the "surprise" when it started to fall out.  A week after my first chemo I had my husband buzz my hair down to almost nothing - I felt like a Marine!  Like Janet, my hair started to fall out a couple days after my second AC treatment.  I had just finished my shower and was running a towel over my head and - viola! - little tiny hairs started to fall like dried pine needles off a Christmas tree.  I spent the morning shaving my head (kinda hard to do by yourself, especially in the back).  By then I was glad to get rid of the hair; it felt like little needles sticking in my head and it hurt!

I chose to do these things because I knew my hair would fall out, and I wanted to have some control over the process (well, as much control as I could).  I didn't want the cancer and treatment to "take" my hair - dammit, I was going to "take" it before they could! 

I bought a wig and never wore it - tried it once and hated it.  I wore scarves and loved them.  I went bald at home and wore a baseball cap to the store.  My father loved seeing me without hair - he couldn't stop telling me how beautiful I was.  I think he was proud of me and all I was going through.  My mother thought my bald head was a "badge of honor" and I appreciated that.  My husband never failed to tell me he loved me and that I was beautiful; he felt the hair loss was proof the chemo was working.  In the end, I actually enjoyed my time without hair (no bad hair days for months!).  I was alive; my hair would grow back; for me, it felt like a small price to pay.

And grow back it has!  It started growing about a month after my final AC treatment, over a year ago.  I've had two professional haircuts since then (and one on my own to get rid of straggly curly hair), and I'm choosing to keep it short and pixie-ish.  I love it. 

It is a shock for us, as women, to lose our hair.  There were moments when I felt unattractice and even unfeminine, but I tried to find positives when I could.  No bad hair days.  Didn't have to pluck my eyebrows.  No waxing.  No shaving my legs.  For all the work we do to get rid of hair all over our bodies...it was nice not to have to do that for a few months!

I'm sorry you're going through this.  It really does get better, though, and doesn't last as long as we fear it will.  If you're going to lose your hair, then dress up your head in ways that make you feel pretty, special, or at least normal.  A good wig is worth every penny.  Beautiful scarves, stylish hats.  Take care of yourself.  {hug}

ruthbru

With the chemo I did (AC) virtually everyone loses their hair. I got fitted for a really cute wig going in and had my head shaved right after my second treatment when I started that 'tingling' feeling. I felt better because the timing was MY choice. Everyone makes different choices about how they want to handle bald, but I did wear the wig the whole time & nobody knew it wasn't my hair unless I told them. (I was at a reunion & a friend whom I hadn't seen for awhile but who knew I was doing chemo remarked, "At least you didn't lose your hair."). My hair came back fine too (6 months with the wig). I have ended up with a cute short style I never would of tried AND a color that I found looked really nice only because I was trapped in that fitting room trying on various cuts & colors of wigs.

One thing you should do, sign up for a 'Look Good, Feel Better' session sponsered by the American Cancer Society. They give you all sorts of good tips on wigs, scarves etc. show you how to use makeup to your best advantage & give you a bunch of really nice makeup for free.

This is such a rotten time, but it will pass....just get through it one step at a time. Hang in there!

PeggySull

NissaVilla,



When Ii first started reading and posting here, I realized that almost everyone going into chemo focuses a lot of energy on hair loss and how to hide baldness. I did too.



IMHO, I think it was helpful for me to mourn the loss of my hair. Meant I was not in denial about my BC. Let your tears flow and have someone hold you. Now to the practical



Everyone seems to find their own personal solutions eventually. I started by going toms good wig shop right away so i could compare my natural hair to the wigs. Got something that was very close. Since i wasn't good at tying scarves, i went to the beaubeau site where you can buy pre tied rayon and silk scarves that are beautiful and more comfortable than wigs in the hear.



Then I had my hair cut very short. That helped with the achy feeling I had in my scalp. As I lost more hair, my husband shaved my head and I was glad to have the wig and scarves ready.



You will find what works for you.



Over time I got over feeling self-conscious when I went out. I thought I would wear the scarves in the house around my husband but that lasted about two days! I went bald around the house and when I passed mirrors sometimes I would cry again. I think I was mourning having BC with all it's attendant losses.



When I was first reading posts about hair, some women were talking about "going topless". I was so overwhelmed that at first I misunderstood. I thought they meant really going topless and since I was having a bilateral mastectomy, I wanted to know which plastic surgeon they had! If they could go shirtless, he or she must be an incredible surgeon.



Now that my hair is 1/4 inch long (finished chemo March 13), I go topless and am truly comfortable with my new look.



All this is to say you will get through each part of this journey and will emerge like a butterfly from a cocoon.



Hugs,

Peggy

Racy

NisaVilla, hair loss is a very individual thing to deal with and you will not necessarily choose to manage it in the same way as other posters.



My hair started falling out on day 15 after the first chemo. I did not get my hair cut overly short or shave it off, but dealt with the hair fall as it happened as I thought maybe I would not lose it all. The hair fall process was messy but I used a hair net to keep the hair falling to the ground and only combed once a day. It was about two weeks after the start of the hair fall that I started wearing a wig, as I had lost about 60% of my hair by then. My wig was just like my real hair but hot, considering I was also having hot flashes and it was summer.



I eventually lost about 90% of my hair over several weeks and it did not start growing back until about 8 weeks after final chemo. Waiting for the hair to regrow was the hardest part as it took about 6 months to grow 2 inches!



There is a forum topic here called 'Hair hair hair -another question' where ladies share information about dealing with hair loss. A lot of ladies post photos there showing their progress. Caroll2 is a particular inspiration on that thread, and Lago, if she is still active there.



There is no doubt that hair loss is hard to deal with. The best you can do is read suggestions about how others have dealt with it and decide what will work best for you.



Wishing you well with your treatment.

honeybair

NisaVilla,  Most of us mourn the loss of our hair at first but we gradually come to accept it and learn to live with it.  I refused to look at myself at first when totally bald and always wore turbans in my home and a wig when going out.  Still, I will be happy to have enough hair to lose the wig because it is so hot now in summer.   Now that I have some brown fringe,I no longer wear turbans in my home.  I will confess though,  I really miss my eyebrows but am so grateful for brown eyeshadow which I use to color them in.

This cancer club is one all of us prefer not to join, but at least on this site we have one another for advice and comfort.

Wishing you well and restored to perfect health.

aaoaao

This is my 2nd experience with the bald look. 

The first time I started to lose my hair approximately 18 days after my chemo.  It started coming out gradually but then began coming out in large amounts.  Everytime I touched my head large amounts of hair would fall.  Hair also was everywhere, on my pillows, on my clothes, all over the seats in the car.  I decided enough was enough and shaved my head.  At first I was nervous about what people would think but my family told me I had a perfectly shaped head.  I actually felt pretty good about it.  I never wore anything at home but would wear a scarf or hat when going out.

When my cancer returned and I started chemo again I knew what to expect.  After day 14 my hair just began to fall out and I decided to shave it again rather than wait for the major hair droppage.  Again I felt okay with the lack of hair.  Once I even forgot I was bald (believe it or not) and left to go to the grocery store.  I didn't realize I was without my hat until I went to get out of the car.  I didn't want to drive all the way back home, since I live in a rural area it would take some time.  I just went shopping and most people seem to not even notice.  Heck with a lot of the young people shaving half their heads these days I don't think I was that shocking.  

I never used a wig because they're hot and with hot flashes already that's the last thing I need.  Also I'm fighting a major disease and I shouldn't be ashamed of it.  If I needed a cane, wheelchair, hearing aide...etc. would I feel like I had to hide it.  If someone were to stare I am of the opinion that "hey I have cancer, deal with it, I have to!"

fredntan

hugs sweetheart.

I am wearing pigtails today. my hairdresser said I am too old-46! I am post chemo a year and 4months. I have the most curliest hair now.

it will grow back. it hurts losing it

Denise-G

What I wish I would have known before my hair fell out from AC Chemo:

1)  Your head hurts and kind of aches - THIS IS NORMAL

2)  My hair would start to fall out on Day 17.

3)  It was a very good thing to cut hair very short before the fallout.

4)  You will know when it is time to shave your head - and by that time - it is a relief.  All the worry is worse than actually doing it.

5)  You make it through wigs, scarves and hats - somehow, someway - and get compliments on your wig that you never got on your hair from strangers.

6)  When you get your "new" hair back, often times it is better than your "old" hair.  Mine sure is - thicker, prettier, has wave and body - and so much easier to take care of than previous hair.

7)  IT IS SO HARD - but you can and will do it.  And you will look back with fondness to the bald days some days, and you will never complain of a bad hair day ever again, and the stupid crap you used to worry about when your hair wasn't perfect never bothers you again!!

madamreich

Hi there!!! Don't know what chemo regimin your on, I had ACT. I was told by my oncologist that around the fourteenth day of my chemo I WOULD lose my hair. Wow he was on the money!!! I chose to be in charge of my cancer so I had my hair stylist shave my head the next day!!! I did have a great wig but only wore it a few times as it was painful to wear. I chose to wear bandanas and hats!!! For me even harder than my head hair loss was the loss of my eyebrows and lashes. That's when I really looked sick. You really don't realize the purpose of them until they are gone!!! Positive thoughts gal that's what helps you through it!!!

christina0001

So sorry you are going through this. I could not stand the anticipation of my hair coming out, and just had my head shaved. I think I had it done around the two week mark. That's what helped me, although it's not easy no matter what, I don't think.

LW0919

First of all, I want to tell you that I'm so sorry you have to go through this too. Losing my hair was unbelievably hard. Waiting on it to come out was excruciating enough but when it actually starts, it can be devastating if you're a "hair" person. My hair started to come out a little when I would run my hands through it around day 14. I remember feeling weird sensations too, like a bit of scalp tingling but soon it began to hurt. The scalp pain reminded me of when I would wear my hair up and it was pulled tight and then then would let it down and it would ache but then go away but with this scalp pain you feel it for much longer. By day 17, it was coming out in large handfuls and I took a couple of days off of work and just cried. I mourned the loss of my hair. I was sad, scared and angry. I could never bring myself to shave it, just let nature take its course. I did cut it shorter and shorter but never shaved it. Now I'm 4 weeks PFC and have a fairly thick even growth of hair that's about 1/2" long. Out of the 3 surgeries and 6 rounds of chemo, I still feel that the hardest to deal with was the loss of my hair. It's normal to freak out over it, because it seems so unreal that we should have to go through it but it does get easier to deal with. It may not seem like it right now because you are just beginning, but just know that you will get through it. It will be hard, but you will get thought it and will be a stronger person when you get through to the other side. Hang in there and just know we are all here for you.

NisaVilla

I would like to thank everyone for your responses. You are the sisters and the Mom that I dont have and wish I did! The following days to my post were filled with a burning headache that went away Sunday which marked the beginning of chunks of hair loss. How traumatic that was, with big chucks falling off into my hands when barely touching my hair, ugh! Yesterday I had it cut to 1/2 inch and was told this will last a few more days and then my head will be truly bald. After my haircut, I purchased a pretty wig (named Alia) which felt totally weird and took it off when I got home. I put a scarf over my head and have not removed it since! Here is the silly part... I did not go to work today because I could not again put the wig the right way! I think I am not leaving my house for the next 6 months, LoL! This whole thing is horrendous, I have been faking it doing well but now with no hair, the denial is over. I am immensely thankful to each of you for your words, wise advice and support! I dont know if or how people who responded get to read my response but I hope you do so you know how helpful you have been to me. Sending hugs and gentle head-rubs

Denise-G

NisaVilla - sending a big hug to you.  It will get easier, I promise, but it is all so hard.  I was embarrassed by my wig at first, but I got very used to it inspite of it being HOT.  I would get mad because people would compliment my hair -- one person who did not know me said it was the cutest haircut she had ever seen - could she take a picture?   When I told her it was a wig, poor thing about died!  LOL!

It is good that you are no longer faking it.  It is horrendous every last part of it.  But so many good things do happen along the way!  Be real and let people know the reality. 

ruthbru

If you want to try to make the wig work, talk to your beautican. Either she can help you with fitting the wig so it fits nicely or she may be able to refer you to someone who can. Most  bigger cities have salons/beauticans who specialize in helping people with hair loss. There are also lots of cute scarves, turbans & even hats with bangs. One thing my beautican told me to do was to buy Nioxin shampoo, conditioner & scalp treatment (for chemically treated hair, as your scalp is being chemically treated from the inside out). I shampooed my 'hair' (scalp) with it all during chemo & it really helped my hair grow back in nicely once I was done.

Denise-G

NisaVilla and ruthbru - oh yes, I forgot about having my wig cut by my niece, the hair stylist!  It went from a kind of gobby mess to the cutest fake hair on the planet.

Janetanned

NisaVilla - My wig did take some getting use to, but it didn't take long.  I too had people compliment my cute 'hairstyle'.  I never got these compliments with my real hair.  As mentioned above, a hair stylist can cut and shape your wig if needed.  The wig shop that I used had a local hairdresser who offered this service for free.  On hot days I found a baseball cap or scarf to be more comfortable.

I found some cute scarves on ebay and on other online places such as   http://www.headcovers.com/  and http://www.tlcdirect.org/ .  A little retail therapy might do you some good right now!