Hi to everyone on the forum, first I would like to say what a great help it has been to me to have the good fortune of finding the Myeloma Beacon site.
Last week I completed my stem cell collection, what was meant to be two days as an outpatient became five days in hospital, due to a massive viral infection and very high fever.
Luck was on my side, they were still able to take two days of stem cells and retrieve enough for my transfer in three weeks if I can get over the virus.
Would love to here anyone's thoughts on wearing wigs? I have always thought I would not want to, but yesterday my hair started to fall out in handfuls, and more today, at this stage by the end of the week I will be bald! Today I am going to get it cut short, but I have become very depressed about the whole thing as up to now I have had a full head of hair even after six months of chemo.
What do other patients think? Does it make you more confident? Or make you more aware of your condition?
I have some nice turbans I have bought so I have them to wear but if it is going to be a wig I would rather purchase before I have no hair.
Love any feedback!
Forums
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Should I buy a wig?
Not multiple myeloma related, but cancer related. I have a friend who had breast cancer, and lost her hair. We went shopping for wigs together for her. She seemed like she was going to get one, but decided she didn't like the way it felt. Perhaps that would be a good route to try, try some wigs on, and see if you like it. Look in the mirror. See how you feel when you are trying it on. See how you feel when you don't have it on.
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Inquisitive
Re: Should I buy a wig?
Hi Tori,
This is a good question that doesn't get enough attention. Right after my diagnosis, I had a different oncologist (for only about two weeks thank God). I expressed my concern about ending up looking like a Cabbage Patch doll due to potential steroid weight gain and hair loss. She sort of scolded me, "You have bigger things to worry about". I felt like punching her in the mouth, this woman who was ten years younger, 40 lbs. thinner and had beautiful long brown hair and no cancer I might add. But, I'm not the violent sort so I just said, 'being superficial is a luxury and I'd like that luxury back".
That seemed to stop her in her tracks. For me, losing my hair has affected me more negatively than some of the annoying side effects from my treatment. (Granted, I've been pretty lucky in the side effects department though). Nevertheless, for the first month or two of being bald, I would often burst into tears when I would see myself in the mirror (during alone times..didn't want to subject my husband to my self pity).
My feeling is that there are two types of comfort regarding the hair loss issue: physical and mental. For that reason, I would suggest getting a wig just to give yourself more options. As to my experience, here's my longer winded answer.
I knew I was getting the Cytoxan for my harvest on September 20th of last year and that I would follow that up with 10 days of Neupogen shots. Since I didn't know how I would feel physically during that time and I was told by numerous sources that my hair would definitely fall out within 2 or 3 weeks, I decided to get it shaved off on September 17th. I was in a quandry as to who would help me with that. I didn't want to have it done at my regular salon because I didn't want to cry there and I didn't want to subject my hair dresser to those emotions either. She was upset for me and her brother is dealing with leukemia. My husband offered but it felt like a really unsexy thing for him to have to do and I didn't think I could bear it.
Luckily, the wig store where I bought the wig had private haircut areas and they did it for me for free. Because I had no emotional connection to them, it made it easier. They had seen it all before. I didn't cry. She shaved me down to a short crew cut because she said it would fall out easier if it wasn't to the quick. I haven't heard this from anyone else so I don't know if it's accurate. My hair ended up coming out completely after I'd been in the hospital for a week during my transplant . I was glad that I'd already become slightly accustomed to not having hair and also that when it came out, the strands were less than a half inch long. Emotionally, I think it would have been harder to have my longer hair come out on top of the stress of the hospital stay.
When I came home from the transplant, I had a wig ready to wear and one that needed to be trimmed because it looked too "Farrah". I had bought the first one when I got my head buzzed. It was long and was the color of Wynona Judd's. I figured if I had to go through all this stuff, I was going to have fun and try some things that I probably wouldn't or couldn't do with my real hair. When I got it home, I realized that it was too long for my taste because I felt like I looked like I was trying to channel Wynona. I had a stylist who was comfortable with cutting wigs, cut it while it was on my head and now it's about the same length as what I had before the hair loss and looks pretty good.
I had also, at the last minute before my stay at the hospital, bought a blonde wig. The mistake I made was that I had tried on a wig that I liked but wanted it blonder like my old box-blonde hair and so I had the store order the wig in my color. When it arrived it sat on my head differently than the one I tried on and I thought a trim would do the trick like before. I got it trimmed up after I was cleared to go out in public. Unfortunately, when I put that wig on I feel like a crazed soccer mom looking for a bunch of screaming kids to drive around in a van. It's not me. My husband calls me Marilyn when I have it on but it feels more like Carol Brady with a bob.
Later, on an impulse, I got a third wig which has turned out to be my favorite. It's light brown with blonde highlights and I had them put a small pink extension in it that sort of peeks out from time to time. It looks right on my head and when I have it on I feel as good as I could this side of not having my own hair. I figure that some people seeing me know that I'm wearing a wig, but I'm okay with that. I think of them as accessories and when I return to work teaching 5th graders, I will probably show them my head without the wigs to avoid whispers or unruly kids daring each other to tug it off.
I'm toying with the idea of wearing the red one on test days and pretending I'm the mean substitute as a joke. That's what I like about 10-year-olds ... they like a good joke!
The scarves and hats are more comfortable physically but I feel like an old lady or a victim when I wear them in public. (Probably many other women have a better head/face for them than I do and don't feel this way.) I have one that I wear for comfort around the house and my husband I refer to that persona as "the bridge dweller" because I look like a homeless person. I have another that makes me look like Stevie Van Zandt from Bruce Springsteen's band. We have a good laugh and he's been great about telling me I look okay even when I know it's not true.
The wigs are okay comfort wise for a few hours but I equate them with high heels. After a few hours you just want to go home and take them off. I'm not sure how it's going to be when the weather gets hot but I imagine air conditioning will be mandatory.
Anyway, go check out wigs and see how you feel. Before you buy one, find out if your insurance reimburses for them and get your doctor to write a prescription for one. My insurance will pay about $300 per calendar year. Also, I've been told that there are wigs meant for bald heads and ones meant for people with hair. Supposedly they sit on the head differently. If money is a concern, sometimes the local chapter of the American Cancer Society has wigs for free.
Good luck with everything and try to have fun!
This is a good question that doesn't get enough attention. Right after my diagnosis, I had a different oncologist (for only about two weeks thank God). I expressed my concern about ending up looking like a Cabbage Patch doll due to potential steroid weight gain and hair loss. She sort of scolded me, "You have bigger things to worry about". I felt like punching her in the mouth, this woman who was ten years younger, 40 lbs. thinner and had beautiful long brown hair and no cancer I might add. But, I'm not the violent sort so I just said, 'being superficial is a luxury and I'd like that luxury back".
That seemed to stop her in her tracks. For me, losing my hair has affected me more negatively than some of the annoying side effects from my treatment. (Granted, I've been pretty lucky in the side effects department though). Nevertheless, for the first month or two of being bald, I would often burst into tears when I would see myself in the mirror (during alone times..didn't want to subject my husband to my self pity).
My feeling is that there are two types of comfort regarding the hair loss issue: physical and mental. For that reason, I would suggest getting a wig just to give yourself more options. As to my experience, here's my longer winded answer.
I knew I was getting the Cytoxan for my harvest on September 20th of last year and that I would follow that up with 10 days of Neupogen shots. Since I didn't know how I would feel physically during that time and I was told by numerous sources that my hair would definitely fall out within 2 or 3 weeks, I decided to get it shaved off on September 17th. I was in a quandry as to who would help me with that. I didn't want to have it done at my regular salon because I didn't want to cry there and I didn't want to subject my hair dresser to those emotions either. She was upset for me and her brother is dealing with leukemia. My husband offered but it felt like a really unsexy thing for him to have to do and I didn't think I could bear it.
Luckily, the wig store where I bought the wig had private haircut areas and they did it for me for free. Because I had no emotional connection to them, it made it easier. They had seen it all before. I didn't cry. She shaved me down to a short crew cut because she said it would fall out easier if it wasn't to the quick. I haven't heard this from anyone else so I don't know if it's accurate. My hair ended up coming out completely after I'd been in the hospital for a week during my transplant . I was glad that I'd already become slightly accustomed to not having hair and also that when it came out, the strands were less than a half inch long. Emotionally, I think it would have been harder to have my longer hair come out on top of the stress of the hospital stay.
When I came home from the transplant, I had a wig ready to wear and one that needed to be trimmed because it looked too "Farrah". I had bought the first one when I got my head buzzed. It was long and was the color of Wynona Judd's. I figured if I had to go through all this stuff, I was going to have fun and try some things that I probably wouldn't or couldn't do with my real hair. When I got it home, I realized that it was too long for my taste because I felt like I looked like I was trying to channel Wynona. I had a stylist who was comfortable with cutting wigs, cut it while it was on my head and now it's about the same length as what I had before the hair loss and looks pretty good.
I had also, at the last minute before my stay at the hospital, bought a blonde wig. The mistake I made was that I had tried on a wig that I liked but wanted it blonder like my old box-blonde hair and so I had the store order the wig in my color. When it arrived it sat on my head differently than the one I tried on and I thought a trim would do the trick like before. I got it trimmed up after I was cleared to go out in public. Unfortunately, when I put that wig on I feel like a crazed soccer mom looking for a bunch of screaming kids to drive around in a van. It's not me. My husband calls me Marilyn when I have it on but it feels more like Carol Brady with a bob.
Later, on an impulse, I got a third wig which has turned out to be my favorite. It's light brown with blonde highlights and I had them put a small pink extension in it that sort of peeks out from time to time. It looks right on my head and when I have it on I feel as good as I could this side of not having my own hair. I figure that some people seeing me know that I'm wearing a wig, but I'm okay with that. I think of them as accessories and when I return to work teaching 5th graders, I will probably show them my head without the wigs to avoid whispers or unruly kids daring each other to tug it off.
I'm toying with the idea of wearing the red one on test days and pretending I'm the mean substitute as a joke. That's what I like about 10-year-olds ... they like a good joke!
The scarves and hats are more comfortable physically but I feel like an old lady or a victim when I wear them in public. (Probably many other women have a better head/face for them than I do and don't feel this way.) I have one that I wear for comfort around the house and my husband I refer to that persona as "the bridge dweller" because I look like a homeless person. I have another that makes me look like Stevie Van Zandt from Bruce Springsteen's band. We have a good laugh and he's been great about telling me I look okay even when I know it's not true.
The wigs are okay comfort wise for a few hours but I equate them with high heels. After a few hours you just want to go home and take them off. I'm not sure how it's going to be when the weather gets hot but I imagine air conditioning will be mandatory.
Anyway, go check out wigs and see how you feel. Before you buy one, find out if your insurance reimburses for them and get your doctor to write a prescription for one. My insurance will pay about $300 per calendar year. Also, I've been told that there are wigs meant for bald heads and ones meant for people with hair. Supposedly they sit on the head differently. If money is a concern, sometimes the local chapter of the American Cancer Society has wigs for free.
Good luck with everything and try to have fun!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Should I buy a wig?
Hi Tori, Inquisitive and Joy,
I would like to second Joy's thoughts on wearing a wig. It was good for my self-esteem when I had no or very little hair, which was a time period of several months. I 'lost' my hair twice, since as discussed yesterday, two doses of HD chemotherapy were involved in getting an ASCT. I thought that maybe I wouldn't have this side effect, and went to my regular hairdresser to get a shorter, convenient style. My hair started to fall out in clumps as he combed it, much to my surprise.
After that experience, my family took me wig shopping, and it was a good fashion accessory that I used from Dec. 2009 - May 2010. That would have been quite a long time to go with scarves and turbans, even though I don't mind that look. I later wrote a column about that, and gave a copy to my hairdresser. It was based on the Beatles song:
'When I'm Sixty-Four'. We were singing it in out choir when I got back into that....
'When I get older, losing my hair, many years from now.....'.
Joy sounds very adventurous in her choice of wigs!
I would like to second Joy's thoughts on wearing a wig. It was good for my self-esteem when I had no or very little hair, which was a time period of several months. I 'lost' my hair twice, since as discussed yesterday, two doses of HD chemotherapy were involved in getting an ASCT. I thought that maybe I wouldn't have this side effect, and went to my regular hairdresser to get a shorter, convenient style. My hair started to fall out in clumps as he combed it, much to my surprise.
After that experience, my family took me wig shopping, and it was a good fashion accessory that I used from Dec. 2009 - May 2010. That would have been quite a long time to go with scarves and turbans, even though I don't mind that look. I later wrote a column about that, and gave a copy to my hairdresser. It was based on the Beatles song:
'When I'm Sixty-Four'. We were singing it in out choir when I got back into that....
'When I get older, losing my hair, many years from now.....'.
Joy sounds very adventurous in her choice of wigs!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Should I buy a wig?
I had a very different reaction to losing my hair than the others who posted so far. I knew 6 months ahead of time that I would lose my hair as part of the stem cell transplant process. So, emotionally I had dealt with being bald. I also get really claustrophobic wearing hats so knew that a wig would be out of the question. My transplant was scheduled for January 2010. For Christmas 2009 I asked for colorful, fun scarves to wear while I was bald. I received several and learned how to wrap them from one of my African American friends who frequently wears head wraps.
When my hair started to come out I went to my hairdresser, who had been forewarned, to have my head shaved. I didn't have any problems with him doing it, but he did. It took him 3 complete passes of my head before he shaved it all off. He was almost in tears. I had brought a beautiful scarf with me to put on afterwards and went to my favorite restaurant for lunch to celebrate the passage from having hair to bald. It really surprised me at how well I handled the new look. If it hadn't been a cold, snowy winter I probably wouldn't have worn anything on my head when I went out in public. At home I went bald.
I continued to wear scarves on my head when I returned to work full time as a physical therapist treating people who had cancer. My patients really connected with me because I was living a life that they were living, too. By the end of May my hair was about 1/2 inch long and I decided that I couldn't tolerate anything on my head any more. My coming out was at a day long cancer conference that the Cancer Support Community sponsored. I went up on stage as part of a drumming program and declared my independence from covering my head.
The whole experience was a lesson on what I see as me. I didn't need my hair to be me and to be seen in public. When my hair grew back it was quite curly. I normally have stick straight very fine hair. The curls have gone, but I still have some very nice waves. My hairdresser is constantly amazed by the change in my hair since the transplant. He has learned how to cut my hair to enhance and to tame the waves that I have.
Whatever you decide for you, enjoy the experience and play around with wigs, scarves, hats, nothing. I found that having fun with baldness, curls and waves helped me to live through the transplant procedure, and after, with my sanity in place. My oncologist enjoyed coming into my room at the hospital and patting my bald head.
Nancy in Phila
When my hair started to come out I went to my hairdresser, who had been forewarned, to have my head shaved. I didn't have any problems with him doing it, but he did. It took him 3 complete passes of my head before he shaved it all off. He was almost in tears. I had brought a beautiful scarf with me to put on afterwards and went to my favorite restaurant for lunch to celebrate the passage from having hair to bald. It really surprised me at how well I handled the new look. If it hadn't been a cold, snowy winter I probably wouldn't have worn anything on my head when I went out in public. At home I went bald.
I continued to wear scarves on my head when I returned to work full time as a physical therapist treating people who had cancer. My patients really connected with me because I was living a life that they were living, too. By the end of May my hair was about 1/2 inch long and I decided that I couldn't tolerate anything on my head any more. My coming out was at a day long cancer conference that the Cancer Support Community sponsored. I went up on stage as part of a drumming program and declared my independence from covering my head.
The whole experience was a lesson on what I see as me. I didn't need my hair to be me and to be seen in public. When my hair grew back it was quite curly. I normally have stick straight very fine hair. The curls have gone, but I still have some very nice waves. My hairdresser is constantly amazed by the change in my hair since the transplant. He has learned how to cut my hair to enhance and to tame the waves that I have.
Whatever you decide for you, enjoy the experience and play around with wigs, scarves, hats, nothing. I found that having fun with baldness, curls and waves helped me to live through the transplant procedure, and after, with my sanity in place. My oncologist enjoyed coming into my room at the hospital and patting my bald head.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Should I buy a wig?
You will get your hair within 2 months after the stem cell transplant. Wish you the best.
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Nuhanad Ak-Bawad
Re: Should I buy a wig?
My husband did not like being bald. He wanted people he knew to still just think of him as "Tom". When he was bald he felt like they were looking at him as "cancer".
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Should I buy a wig?
Prior to my mom's ASCT, she had my sister shave her head, and bought wigs. She did wear the wig a few times, but decided that it was too much of hassle. She ended up just wearing hats, and was fine with it.
So, I guess what I am saying is do what you want to do. You are already going through a tough procedure. These other decisions are all up to you and what you feel like.
Best wishes, and may you have quick recovery!
So, I guess what I am saying is do what you want to do. You are already going through a tough procedure. These other decisions are all up to you and what you feel like.
Best wishes, and may you have quick recovery!
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Should I buy a wig?
I never lost my hair during all my chemo. It was funny because when you tell people you are on chemo the first thing they do is look at your head. I was warned by all my doctors ( hematologist x2, my GP and a cardiologist) that ya hair would fall out when I had the transplant. So I had mentally prepared for it.
I was in hospital in the bone marrow transplant unit when the the first clump fell out. I rang the bell and got the nurse to shave my head. I felt that having it fall out in clumps over a period of time would be more traumatic. I am glad I did it was easier seeing little hairs on my pillow.
It was winter here so I wore beanies to keep warm. I never liked the idea of a wig, i tried one on and it made my head itch and felt hot, like I couldn't breath. The leukemia foundation offered me a voucher to get a wig but I never did.
Once the weather changed it was too hot to wear beanies and I thought people know I am bald underneath so what's the difference? So I have been walking around for months now with my hair finally starting to come back. I have only had one little girl point and say mommy the lady has no hair. It wasn't in a nasty tone more questioning. I have not felt ashamed not once. I have cancer, I am bald and no amount of covering up is going to change how others see me so I don't. If anything it has made more people aware of myeloma, I had one lady stop me and say that her mother also had breast cancer, when I replied that I didn't and that I had myeloma she didn't know what it was and said thank you for telling her what it was, she said she would support the worlds greatest shave this year.
I guess you need to find what works for you, what gives you confidence. Good luck with your treatment.
I was in hospital in the bone marrow transplant unit when the the first clump fell out. I rang the bell and got the nurse to shave my head. I felt that having it fall out in clumps over a period of time would be more traumatic. I am glad I did it was easier seeing little hairs on my pillow.
It was winter here so I wore beanies to keep warm. I never liked the idea of a wig, i tried one on and it made my head itch and felt hot, like I couldn't breath. The leukemia foundation offered me a voucher to get a wig but I never did.
Once the weather changed it was too hot to wear beanies and I thought people know I am bald underneath so what's the difference? So I have been walking around for months now with my hair finally starting to come back. I have only had one little girl point and say mommy the lady has no hair. It wasn't in a nasty tone more questioning. I have not felt ashamed not once. I have cancer, I am bald and no amount of covering up is going to change how others see me so I don't. If anything it has made more people aware of myeloma, I had one lady stop me and say that her mother also had breast cancer, when I replied that I didn't and that I had myeloma she didn't know what it was and said thank you for telling her what it was, she said she would support the worlds greatest shave this year.
I guess you need to find what works for you, what gives you confidence. Good luck with your treatment.
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Should I buy a wig?
I'll have to admit that my hair has always been 'my best feature,' thick, wavy and a lot of it, so when I was told that I would lose it, I obsessed over it. Shoot, I'd be throwing up, or running fevers, getting peripheral neuropathy and all the other nasty little side effects that go along with the treatment for this disease, and I was still more worried about my hair falling out than anything else.
It didn't start growing again until nearly two months after the transplant, including the hospital stay, and now it's, oh, a little over a quarter of an inch long. Dunno if it's going to 'come in curly' or not, but I discovered something about myself that I'd never have predicted: I don't care. I HATE scarves and hats without hair, and wigs itch like crazy. I'm not 'me' in 'em. When I wear a hat, it's obvious that the reason I'm wearing one is that I am bald underneath it, and since that's true, why bother? Same thing for scarves. It might be different if I lived in snow country, and needed them for 'warm,' but I don't; I live in southern California. In fact, scarves and hats make my head too hot and are uncomfortable. So...why wear 'em? Shoot, the only women down here who DO wear hats and head wraps are cancer patients and statuesque black women, who look wonderful in them. Since I'm neither statuesque nor black and can't pull 'em off, I can't see the point.
So...I rock the bald look.
Yeah, it is a bit 'in your face,' but so is the obvious 'cancer patient here!' statement a cap/hat/scarf seems to be around these parts.
The point is, each one of us is different, and we don't know what we are going to prefer until we actually get 'there.' I don't think that there is a 'correct' choice in this...but for me, personally? I'll wait to wear my hats until I have hair to put 'em on, and wigs itch. I've noticed, actually, that I get very few, if any, 'odd looks,'
.............but then S.California folks tend to be strange anyway.
It didn't start growing again until nearly two months after the transplant, including the hospital stay, and now it's, oh, a little over a quarter of an inch long. Dunno if it's going to 'come in curly' or not, but I discovered something about myself that I'd never have predicted: I don't care. I HATE scarves and hats without hair, and wigs itch like crazy. I'm not 'me' in 'em. When I wear a hat, it's obvious that the reason I'm wearing one is that I am bald underneath it, and since that's true, why bother? Same thing for scarves. It might be different if I lived in snow country, and needed them for 'warm,' but I don't; I live in southern California. In fact, scarves and hats make my head too hot and are uncomfortable. So...why wear 'em? Shoot, the only women down here who DO wear hats and head wraps are cancer patients and statuesque black women, who look wonderful in them. Since I'm neither statuesque nor black and can't pull 'em off, I can't see the point.
So...I rock the bald look.
Yeah, it is a bit 'in your face,' but so is the obvious 'cancer patient here!' statement a cap/hat/scarf seems to be around these parts. The point is, each one of us is different, and we don't know what we are going to prefer until we actually get 'there.' I don't think that there is a 'correct' choice in this...but for me, personally? I'll wait to wear my hats until I have hair to put 'em on, and wigs itch. I've noticed, actually, that I get very few, if any, 'odd looks,'
.............but then S.California folks tend to be strange anyway.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
16 posts
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