Monday, September 15, 2014

alopecia

Last week the top of my head started to look blurry in the mirror.  My hair has finally started to grow again.

I wish I could say just how I feel about my baldness.  Do I like people knowing what I am going through?  No.  But not no exactly.  This is the first time in over 7 years of the cancer battle that I have lost my hair.  I have at times felt like an impostor.  I looked as good and as normal and as healthy (or so I think) as the woman sitting on the park bench with me, smiling at her kids the same way I was smiling at mine.  She might ask me how I'm doing and I might say fine.  We might talk about our kids and our day and I might leave out that I spent the night barfing from my chemo that has a fat chance of helping with the tumors I have popping up all over my brain.  The grocery store clerk asks genuinely how my day has been, just hours after I getting the results that the cancer is spreading, and I would disingenuously answer, "Great!"

But it was all believable because I looked very normal.

Now everyone knows there is something wrong with me.  Maybe they don't understand how serious or how long of a fight I've had, but they know I'm in the middle of a something terrible.

And so they are kind.  And sometimes awkward.  And they do seem to smile with sympathy.  And a few people you can almost tell have been touched by the same disease.  And usually they are the ones that will strike up a conversation about it.

But would you like your problems to be written on your forehead?  On one hand you would get more respect and understanding (or maybe rarely the opposite).  On the other hand you just want to be treated like everyone else.

It is also just not cute.  I have been fortunate enough to keep my eyebrows, and at least some of my my eyelashes.  But without some mascara and some eyeliner I look pretty scary.  When I walk by the mirror in the morning, out of the corner of my eye I catch Lord Voldemort following me and I have to suppress a scream.

I don't really know that that is what bothers me though.

I think it's feeling normal inside, but the outside telling a different story.  Maybe it's the true story and one I don't want to be told.



There is one wonderful thing: warm raindrops on the skin at the top of my body.  Pure Poetry.

I guess two things.  I haven't picked up my razor for a couple of months.  :)

How have you or your loved ones dealt with hair loss?

27 comments:

  1. This post was pure poetry, Alisa.

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  2. Great post Alisa. I remember the twins when they had cancer. Jalaine was bald for years after she had radiation of the brain, and Janine just lost hers when she was having chemo, but never became completely bald. I used to feel guilty because I had hair and Jalaine didn't. Prayers and blessings going your way from our house to yours. Hang in there!

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    1. Thank you Terri! Years would be so hard! They were strong, brave ladies!

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  3. When my daughter went through chemo in 2007 she lost most of the hair on her crown but had this long fringe that hung on to the edges of her head. She would do some creative things with comb overs but never shaved the rest or bothered with wigs. For so long, people didn't understand how sick she was and that made her frustrated. Being bald gave her some congruence that she didn't have in her life. It was her badge of ...ya...I'm sick...told ya so! kind of thing. She was in 11th grade and kids respected her more I think, more so than when she was sick and had hair...it was weird how they treated her differently. It's gotta be a tough thing either way!!

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    1. Yes, there is a certain amount of sympathy for sure. I'm sure for a teen it would not be too great. Another brave lady!

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  4. You are stunning, with hair, without hair. Inside, outside. Every part of you is just simply beautiful. All my love you beautiful strong woman!!

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    1. I love it when you call me strong Kerryne! ;)

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  5. Jon and I laughed at your Lord Voldemort. You're always in our prayers over here!

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  6. My husband was diagnosed with lymphoma 2 years ago, had 2 major surgeries, chemo and radiation and the thing that seemed to bother him most was the loss of his hair. I know as a woman it must be even more difficult. The good news, it seems to be thicker than before...and he's been cancer free for over a year. Hoping there is light at the end of the tunnel for you as well. Prayers.

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    1. That is GREAT news! The hair, and of course your husband!! Continued luck to you guys!

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  7. It would be a strange experience indeed, having no hair for awhile.

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  8. By writing this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/05/female-baldness-cancer-treatment.html
    Hang in there. Only the brave are bald....not to mention....the beautiful....
    c

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    1. Oh my goodness I love that post! Maybe you should have written the Disney Rapunzel story. :) Thanks for sharing.

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  9. Alisa I have always thought you were beautiful! Not just for your hair, you are beautiful inside and out! What a strength and someone to look up to, even since high school!
    I read this article awhile ago and this made me remember it: http://commonhealth.wbur.org/2012/05/henna-crowns-cancer

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    1. So so cool Jaci! Thanks for sharing! What a fun idea.

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  10. I hated my wigs, but LOVED scarves! I would wrap them around my head and wrap the end into what looked like a bun on the side. I had tons of colors and really miss those days! It was so much easier! I loved matching them with my outfits. My hair growth was stunned from the radiation so it didn't start growing back for 4 months. I embraced it and enjoyed it. Most of the people in my life knew what I was going through before the hair loss, but it is kind of a badge of honor. I had a lot of comments of people in awe that I would dare to post pictures of my baldness on Facebook or on my Christmas card, but it really is something that people can look at and finally understand (sort of) what you are going through. I don't know, I liked being bald more then when the hair started growing back--really short hair wasn't my thing. It's FINALLY (two years later) starting to be an acceptable length for my liking. I wish it was a lot longer, but there are a lot of things us cancer people wish ;). Hang in there beautiful girl...you're gorgeous with or without hair!

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    1. I go for the scarf usually as well. I haven't dared in church yet, I don't even know why, so I do put on my wig for church. It's a pretty itchy 3 hours. Your hair looks really amazing right now. I admit I admire everyone's hair right now. Thanks Jen! You give me hope!

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  11. I think you look gorgeous! I lost most of my eyebrows but lost all my eye lashes three times... seriously. I think that bothered me more than the baldness. I tired the false eyelashes but didn't like those so dark eyeliner was my choice. My hair has now been back to not looking like a chemo patient for about 13 months. I still don't look like the "old" me because I keep cutting my hair as I can't seem to get past the awkward grow-out point. Being bald had it's "good" points.. Scott didn't have to wait for me so long in the mornings, I could wear baseball hats at work and I heard it was good look to rub a bald head. I didn't mind posting pictures of the bald look. I got to the point where I actually wanted people to realize I was sick and being bald pretty much showed that. I was frustrated when people would say they could never "do" that... as if there were a choice. Anyway, it will come back and be as beautiful as it was before. And, BTW - You rock the bald look!

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    1. Way to look on the bright side Jeri. I am relying heavily on eye liner right now. You also rocked the bald look, and the wig, and the hats. I can see how that awkward grow out stage could get tricky. I'll have to keep an eye out for your styles.

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  12. I guess I didn't realize that you wouldn't have hair on your legs either. That'a way to look on the bright side.

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  13. Steven hated the stares when he was bald. But he got used to it and got used to how he looked. I would try to get him to wear hats, but for the most part, he was happier bald. But man, when that hair grew back...you know, it meant the world to him. It still does. He hates to cut it. He had school pictures taken when he was bald. I thought I had suggested wearing a hat, but maybe not. It was so common for him to be bald. Anyway, he got the pictures back months later when his hair had grown back. He was mortified that he hadn't worn a hat. He couldn't believe I let him go out in public so bald. He colored hair on his picture with a sharpie. I know a little boy who doesn't care if he's wearing plaid with stripes isn't really a fair comparison. But even he has shown a lot of vanity in the hair department since his ordeal. So I can only imagine what it means for you or other women. And whether we like it or not, it seems to be worth the hair sacrifice, usually, right?

    I was at a women's conference where Stephanie Neilsen spoke. She had talked to Elder Holland who mentioned that her trial would be a visual reminder to her always of what she had experienced and learned. I think about that with Steven and his amputation a lot. You are amazing and have always inspired so many of us who know what you are going through. Now strangers can be inspired to to see you at the park or the grocery store, whatever you are doing, you are doing it and fighting cancer. And that is really incredible.

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    1. Thanks, Sonja. I remember how excited he was when it started growing back. I am experiencing a little of that myself.

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