Sunday, February 7, 2016

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