Hair, oh crazy unrecognizable hair... From baldness to THIS. To dye it, or not?

My latest via Myeloma Crowd. (Spoiler alert: I took the plunge and dyed. Is this the right decision? Who knows.)

To Dye or Not To Dye. A Million Dollar Question

BY LIZZY SMITH for Myeloma Crowd

My hair is finally growing back after many months of baldness. During the time of “no hair” I wore wigs or caps, no exceptions.

And then about 45 days post melphalan, I started seeing the first signs that my hair was growing. Hooray! Last month, we went to Costa Rica and Nicaragua and I just couldn’t wear a wig in the heat and humidity so I went natural—either the small amount of hair on my head was good enough or I wore hats to keep my scalp from burning.

And when I came back, it was still a bit chilly so hats were the simple, and most comfy, choice.

Today, I have maybe two inches of hair and I have ventured out, even among people I know, with it as is. I’ve been stopped a few times asking who does my hair. So apparently I don’t look like Cancer Girl anymore—some people think I did this on purpose. It is different than my long hair. I’ve had to start developing a new “brand” on how I see myself and how others might see me. Short hair is stronger, more angles, harsher. Ok, fine. I think it ages me but perhaps I’m just getting older,  (and I’m happy to age, because that means I’m still alive).

But… my hair is coming back all sorts of grey and I don’t like it. I desperately want to color it light blonde—like Mia Farrow in Rosemary’s Baby.

But what is concerning me is the toxins I may be exposing myself. Pre cancer diagnosis, I colored my hair about once per month. I also got Brazilian blow-outs, which make one’s hair super silky, shiny, and straight. Did this contribute to getting multiple myeloma? When I did my first tandem stem cell transplants and my hair grew back, I colored my hair about once per month. No Brazilian blow-outs this time—I decided the toxic risks were too great. I also switched up all my haircare products, like shampoos, conditioners and hairsprays, to organic-type products. No parabens, at a minimum. There are a surprisingly great number of products that fall into this category. 

But now it’s time to decide… color or not? Grey or blonde? Are hair dyes toxic enough to cause cancer? I did a little research and found this from the American Cancer Society. Here are excerpts that summarize findings…

It’s not clear how much personal hair dye use might raise cancer risk, if at all. Most studies done so far have not found a strong link, but more studies are needed to help clarify this issue.

Most of the studies looking at whether hair dye products increase the risk of cancer have focused on certain cancers such as bladder cancer, non-Hodgkin lymphoma, leukemia, and breast cancer. These studies have looked at 2 groups of people:

• People who use hair dyes regularly
• People who are exposed to them at work

Bladder cancer: Most studies of people exposed to hair dyes at work, such as hairdressers and barbers, have found a small but fairly consistent increased risk of bladder cancer. However, studies looking at people who have their hair dyed have not found a consistent increase in bladder cancer risk.

Leukemias and lymphomas: Studies looking at a possible link between personal hair dye use and the risk of blood-related cancers such as leukemia and lymphoma have had mixed results. For example, some studies have found an increased risk of certain types of non-Hodgkin lymphoma (but not others) in women who use hair dyes, especially if they began use before 1980 and/or use darker colors. The same types of results have been found in some studies of leukemia risk. However, other studies have not found an increased risk. If there is an effect of hair dye use on blood-related cancers, it is likely to be small. 

Breast and other cancers: Most studies looking at hair dye use and breast cancer have not found an increased risk. For other types of cancer, too few studies have been done to be able to draw any firm conclusions.

Many people use hair dyes, so it is important that more studies are done to get a better idea if these dyes affect cancer risk.

For me, all of this is… clear as mud. So am I going to color my hair? Well, vanity won the day.

Here I am at the salon "before."

...And after

I love it. And I’m now on a quest to find a good hair color that is non-toxic and one that my stylist will agree to try on me.

Until then, when I can't figure out what to do with it, bandanas and baseball cps rule the day.

To read the original article on Myeloma Crowd, click here.

Girls weekend in Vegas & venturing out wigless (in public!)

I had a great weekend and wrote about it in my Divorced Moms column. The biggest news of all? I went out in PUBLIC without a wig! That was really brave (for me).

A Big Girls Weekend Get-Away (And How I’m Not The Same Girl Anymore)
by Lizzy Smith                    

Share on Tumblr

March 28, 2016

I am a big huge fan of girls-only retreats. Sometimes nothing calms my soul than hanging with my
girlfriends away from home (the farther away, the better). I’ve had friends who, when they get a new guy, dump everyone in their lives as they concentrate on their new relationship. Then they (try) to reappear when things head south. I don’t do that—I make a real effort to ensure that I make my friends I priority regardless of my relationship status.

Such is the long history I’ve had with my best friend, Julie. We met in college and have been “besties” ever since. She knows me better than no one. The best part of our friendship? I can tell her anything and feel safe, loved and accepted. Which doesn’t mean that we are not honest with each other even when things get dicey. We have been close for so long that “we” can withstand painful truth, which is one of the many reasons I love her so much—she will give me advice and her opinion, even if it is hard to hear. Developing that kind of relationship takes time, commitment, love, trust and depth. It does not happen overnight.

This past weekend, I took my oldest daughter to Las Vegas and met up with Julie and her oldest daughter. In the warmth of the Vegas sun, we reconnected, ate (and drank) too much, sent our daughters off to a Justin Beiber concert, went on the rollercoaster at New York, New York, and got some fresh vitamin D while laying out at the pool (yes, I put on lots of sunscreen).

What was most exciting, perhaps, was that I bravely went out in public without my trusty wig on for the first time. I went bald in December, thanks to chemotherapy. It took 45 long days until it started growing back. I currently have a nice soft layer on my scalp but I never head out without one of my three wigs. Until this past weekend. Julie and our daughters convinced me that I look great with my shaved head. My daughter said that I look “fierce.” On day two in Vegas, I went to the lobby to buy a coffee and I did it—no wig! And guess what? No one stared at me or said a word. It felt fantastic, liberating actually.

That afternoon, we headed out to the pool and, again, no wig. I was paranoid not to burn my scalp and wrapped my daughter’s t-shirt around my head. When we took selfies, I lost my bravery. I wrapped one of the hotel’s orange towels around my head before we started snapping away. Truth is, a short buzz-cut girl I am not. I am one with long tresses. I couldn’t let any of my Facebook friends or Instagram followers see this person who was not me.

Keep reading...

Is Bald Really More Beautiful?

The first time I lost my hair thanks to a rigorous myeloma treatment protocol, I never went anywhere without wearing a wig. Even in private while at home, I at least wore a beanie cap and if anyone rang the doorbell, I ran and hid until I could get a wig on my head.

This tine around, I have less patience for wigs. I still wear them most of the time but sometimes if it's cold outside, I just wear a thick hat and never take it off. At home, I never wear a wig, just a beany cap because my scalp gets cold. We just flew to Florida and I wore a hat on the plane and a wig everywhere else. Contrast that with my first stint at baldness some four years ago, it was months of new hair growth before I just finally pitched the wig and went with short hair. By then, I had no choice-- my wig would fall right off my head because I had no bald scalp that kept it in place. This time around, I'm not waiting that long.

These days I have some hair on my head. I wrote an article on Myeloma Crowd (www.myelomacrowd.org) called Myeloma 101: Going Bald During Treatment. One reader said that she lost her hair and bald is beautiful---- she goes out completely natural. Is she right? I decided to snap a couple selfies this morning. This is really brave and raw for me because I'm sharing it with you.

Bald...




Wig...




For me, I pick wig. I am not a bald girl. But in four weeks, we are going to Costa Rica and I have decided that by then, no wigs. I'll take a wig with me in case we want to snap some family photos, but other than that, I am going to enjoy feeling the wind on my head. I'll wear hats and be free. If my family can handle seeing the real, natural ME, then why should I care what a bunch of strangers think? Truth is, they'll likely not be thinking about me at all.

Happy Thursday, dear readers!

Lizzy

On cancer and hair loss (it sucks)

I'm the second one from the left. Me with short hair. This was about a year post SCT.

 

This is me just weeks after the first photo was taken. I got back from a trip to Long Beach, California and got hair extensions put in. Finally, I felt like ME again.

When I was first diagnosed with multiple myeloma in 2012, I spent about a year bald and wearing wigs. It took so long to regrow because I had two (tandem) stem cell transplants. Prior to illness, I always had long hair and, in preparation of losing my hair to chemo, I cut it above my shoulders, and then I went to a salon and had it shaved off entirely just a few weeks later. Not long thereafter, I also lost all my eyebrows and eyelashes. The latter was harder than hair loss. For eyebrows, I tried pasting on falsies; I looked like Groucho Marx. I then drew them in with a pencil, which looked far better. Since it was summer, I carried around my trusty eyebrow pencil and a small mirror and touched them up multiple times per day because in the heat, they tended to melt and smudge.

For eyelashes, I tried gluing on fake ones but they hurt my eyes and I gave up. Big huge sunglasses ruled the day. I was obsessed with touching my eyelids and brows every morning to see if they had stared growing back. Happy day when they did. Just when my hair started growing back, it was time for my second transplant and I shaved it all off again. It took longer for my hair to start re-growing the second time around. As one of my nurses said, "Fool me once and I'll regrow, fool me twice, I'll take twice as long." Let's see... my second transplant was in September 2012 and by Christmas, I had dark brown fuzz. Three months. By the time we left on for Copenhagen six months later, I could no longer wear a wig. I had too much hair and the wig would just fall off my head at the slightest touch. I can't say I knew what to do with short curly hair but I tried (and I also went to a salon twice per week for help). By September, so a year post transplant, I had long enough hair for hair extensions, so just like that, from short to long hair.

This is my hair just weeks before it all fell out and what didn't fall out, I had a nurse shave off. I was very sad.

Within six months, my hair was as long as my extensions so I was finally back to normal. That is until I had my third stem cell transplant in December. This time, I was in the hospital for so long that I could not plan for shaving my hair. One day I woke up in my hospital room and I had a big knot in the back of my hair. I tried to run my fingers through it and it all came out. One huge ginormous clump of hair, gone, just like that. I called my nurse who brought in a shaver and we got rid of the rest. Sigh. I was bald again. All the healing and hair growth and normalcy... gone. Just like that.

While death -vs- life (and hair loss) is an easy choice, it is nonetheless super traumatic (at least for me). Because my hair had come to symbolize how far I had come on my myeloma journey. For every inch it grew, it was evidence of healing. Even when my hair was a curly mess in the summer humidity, I never got mad at my hair for not cooperating. After all, it was HAIR. Glorious, beautiful hair. But now, I needed to find beany caps, hats and new wigs again (I gave my old wigs to my daughter). And I had to explain to my daughters that mommy was once again bald. Not only that, my new husband would, for the first time, see his wife with no hair. Looking in the mirror was now a daily reminder that I was SICK. This was all surreal.


One of my trusty and comfy hats. Sometimes, I don't feel like wearing a wig and this is a decent alternative.

 

One of my wigs. I don't wear this one very often, though. Somehow it doesn't fit as snug as another wig I have and I'm paranoid one of my nieces or nephews will pull it off.

It wasn't long before I noticed my eyelashes thinning. It's been 45 days post transplant and I have about four eyelashes per eye. I don't even attempt false eyelashes this time. Instead, I put on dark eyeliner and call it a day. I hate the way my eyes look-- tired and strange. But what can I do about it? NOTHING. And yesterday, I noticed that my eyebrows are starting to fall out. WTH-- shouldn't I be done with this by now? They should be GROWING, not FALLING OUT. Apparently, however, this is normal. So I take out my fat eyebrow pencil and get to work, filling in the gaps of where there is some eyebrow hair and where there isn't.

Today, I noticed the hair on my head is starting to grow back. It's dark and soft and I am excited. Each day, there might be just a little more. And I think I am confident enough this time around to rock a very short hairstyle when there's enough to comfortably cover my scalp. We are heading to Costa Rica on April 1 (if the Zika virus doesn't force us to cancel the trip and go elsewhere). I am hoping that by then, I have enough hair to go wig-less.

In the meantime, I am trying to promote healthy hair growth. I rub organic fractionated coconut oil on my scalp every morning so it doesn't get too dry and flaky. I rub essential oils, too, to encourage hair to grow faster. I got permission to use Rogaine for women. I purchased a box at Target yesterday, though I haven't used it yet. Does it work? The jury is out-- some say yes, others say no. And I pray every single night that, in addition to letting me live, my hair and eyelashes and eyebrows will come back soon. I want to look normal again. I want to heal. I want to be the Old Lizzy, not this sick Myeloma Lizzy.

The joys and pains of this myeloma journey. Somehow between all the horribleness, all we survivors can do it celebrate each win, and enjoy every great moment. One day at a time.

Hugs, Lizzy

After chemo, my new hair looks like...

Before chemo and myeloma, I had straight hair. Not a lick of curl in it. But now, it is very curly.



I was at my infusion appointment yesterday getting my Velcade injection and took this selfie. This is my hair in its natural form post chemo. It is curly and I can straight iron it. But if I wash and semi-dry and go natural, here it is. Before chemo, it was totally straight. Learning to deal with curly hair has been quite a process but I'm far more comfy with it now. Before my trip to Europe and going curly, I straight ironed it most of the time. I fretted over it. But now I love it. When I had short hair and pitched the wig, my hair stylist, Kelsie, had to wash and style my hair twice a week. When it got a bit longer and I went with extensions, Kelsie still needed to style my hair twice a week. Now I see her just once a week. Progress!

WIG!!!

Very short hair with lots of blow drying and straight ironing required.

Hair extensions. This time, I took a curling iron and curled my hair. Typically, it was straightened by Kelsie, the best hair stylist ever.

Learning to be comfy in my own skin is still a process but I love the journey.

It's hard to believe that 14 months ago I was pitching my wig for the first time ever. And just 18 months ago, I barely had peach fuzz on my head. It's grown back fast and healthy and I'm grateful for hair. I'm grateful for life. Every day is a gift.

Long straight hair pre getting myeloma, undergoing treatment that included high dose chemo (melphalin), going bald as a Q-tip (twice!), wearing wigs, and then having my hair grow back.

From www.myelomacrowd.org: I'm going bald! Tips for the ladies on dealing with hair loss

 

I love writing for www.myelomacrowd.org because I want to do everything I can to help others fight and beat this disease. Plus, of course, I want to help further new treatments and cures. Here's one of the articles I wrote that ran while I was in Italy. One of the hardest aspects of chemo is hair loss. It is really traumatic. But there are ways to cope with that loss and here's my list of suggestions.

I’m going bald! Tips for the ladies on dealing with hair loss

by Lizzy Smith

One of the most awful side effects from chemo is losing your hair, especially for us ladies. And what was the worse part of hair loss? Losing my eyebrows and eyelashes, too. But looking back, there were ways to make the hair loss far less traumatic, if there is such a thing. Here are the things I wish I had known back when my hair started falling out in clumps and, faced with the inevitable, I had it all shaved off and started wearing wigs.

1. Prior to hair loss, my scalp would feel hot, my scalp would throb, and I had headaches. I finally realized that it didn’t mean I had a brain tumor– it was my scalp getting ready to shed its hair.
2. Waking up and finding clumps of hair on my pillow was unnerving. There was no denying the fact that I was going to lose my hair and it was time to just shave it.
3. Going with a really short haircut prior to going bald would have provided a nice transition. I didn’t want to have short hair, though, and I put it off. I always had very long hair. It helped define who I was. Going with a short ‘do was just unfathomable. But the reality is that short hair is cute, I was going to lose how I “used” to look in favor of a “new, different, and more resilient” me. I should have embraced that reality and learned to love it. What was the alternative anyway?
4. When picking a wig, I should have picked a very short wig that I liked. Trying on wigs was actually very fun. But I wanted to look like the “old me” so I purchased four wigs, all with long hair. Long haired wigs are a pain in the neck. They tangle easily and I became obsessed with running my fingers through those wigs constantly trying to work out the tangles. It was really annoying. Short haired wigs are far more comfortable and easy to maintain- trust me! Plus, when my hair started growing back and I pitched the wig, I rocked a short hairstyle anyway. I should have just gone with a short style from the beginning.
5. Purchase several wigs. Because every few weeks, you’ll need to take your wig to get it cleaned, conditioned and styled. It oftentimes means leaving your wig with the stylist for a few days. Also, it’s wise to buy wigs that, say, have a cap attached, or a headband. They are fantastic when working out, going for walks or hikes, or simply hanging out poolside in the summer. They can also be comfortable.
6. There’s a chance you’ll lose your eyebrows. I spent a fortune on fake paste-on eyebrows. And they looked completely ridiculous! I looked like Groucho Marx and it was so obviously fake. Do not even bother with them! I hate to admit to this but I just drew them on with a pencil. At first I was shaky with drawing them in but I got really good at it soon enough. Since it was summer, the eyebrows tended to melt. I made sure I didn’t touch my eyebrows and that I “refreshed” them frequently. I carried my trusty eyebrow pencil with me everywhere I went. The good news is that my eyebrows grew back in very quickly, like within a few weeks.
7. There’s a chance you’ll lose your eyelashes. I purchased falsies and only used them when I had to. Most of the time, I simply used a tick black eyeliner as close to my eyelid  I also used sunglasses or tinted reading-type glasses everywhere I went. One had to look very closely to realize that I had no eyelashes. And when I was at a wedding reception, I sucked it up and wore the uncomfortable fake eyelashes. But they are not easy to get on just right, just sayin’. So be prepared to practice a lot. Give yourself time and remain calm as best you can. The good news is that my eyelashes grew back within a month and they were longer and thicker than they ever were pre cancer. I’m often asked if I have eyelash extension. Nope- they’re all real, thanks, chemo! I guess?
8. Massage and condition your scalp. Your head needs it and will help stimulate hair growth. I went to a beauty college once a week and got a scalp massage for $5. I rubbed organic coconut oil on my scalp every morning. It helped.
9. When your hair starts growing back, your wig won’t fit so well anymore. My wig started sliding off with alarming ease. I really worried that with a little wind, I’d end up hairless and embarrassed. I wore a hat to help. Soon it was time to be brave and go without the wig. It felt weird, scary, and AMAZINGLY LIBERATING when that happened.
10. Be prepared for very tight curls! I went from straight hair to extremely curly. I didn’t know what to do with it. I went back to the beauty college and started letting them shampoo and style it two times a week. It was very inexpensive and it was worth the time and money.
11. When my hair grew a few inches, I added hair extensions. In an instance, I had long hair again It’s been about 18 months and I have just four hair extensions now and my hair is long(er) and healthy. Yay!

 

Losing hair is tough but it will grow back. I look at my new hair and while it’s different and I still struggle with the curls, I’m so happy that it’s here. It’s a sign of how far I’ve come in this Myeloma Journey.

For more amazing info on multiple myeloma, visit my favorite web site: www.myelomacrowd.org

Myeloma Crowd article: I'm Out of Wig Prison!

Here's a photo with me and my girls and my favorite wig.

I love writing for www.myelomacrowd.org! It's such a fantastic resource for myeloma warriors, caregivers, and their supporters. Check it out.

I’m out of (wig) prison!

One of the hardest aspects of chemo is losing all your hair. And I mean, at least for me, all of it.
The first time I did my rounds of chemo pre transplant #1, I went to a salon about a week prior to when my nurses told me my hair would start falling out in clumps, and had it all shaved off. I decided that I would dictate when my hair would come out, not the chemo. It was oddly empowering in a way. My mom sobbed when the stylist shaved it all off. I was numb. I walked out wearing a wig that my friend and fellow cancer survivor, Linda, gave me. It wasn’t too bad looking.

Keep reading...