Leukemia. It's not for wimps.

My year spent fighting leukemia. Start to finish with lots of ups and downs. It's still ongoing.


2. It's Just Hair

I was pretty attached to my hair, as I think most women are. I had been growing it out, it was almost to my waist for the first time in my life. I was getting some grays, but I was keeping them covered. I loved my hair. Long, thick and dark, I vainly thought it was one of my better features. However, even with this vain love, I always thought that if I got cancer, I’d just shave it off. No big deal. It’s just hair. It grows back. And then I got diagnosed with leukemia. Among other things, it’s almost certain that you’ll go bald with that one.

I had cancer seven years prior to the leukemia diagnosis and I didn’t lose my hair. It got thicker actually. I foolishly hoped I’d be one of those rarities again. The nurses warned me that my hair would start to fall out about ten days after my first chemo. So I prepared for it (FYI you cannot actually prepare for it). My mom cut it off to my shoulders so I could adjust slowly to not having my long hair anymore. I liked it! It was a fun new style. During my first round of cancer, my mom and I had discussed what to do when my hair started to fall out. The plan was to have a beauty day. Cut it, color it, straighten it, do all the things I’d always been too afraid to try. Unfortunately with leukemia, I was confined to the metro area. I couldn’t go to her beauty shop, so a lot of our options were limited to what we could do at home. I also wasn’t allowed to be in public places, so I couldn’t go to a salon nearby.

Ten days came and went. Nothing. Twelve days, fourteen days…. It was looking like I was going to be a rarity after all. About three weeks after chemo, it started to shed. Not a lot, just a little more than my norm. And then a little more. We were prepared for me to stay in the hospital for a month after that first chemo. I did really well with it though and by my third week, the doctors told me I could go home. I went home with an almost full head of hair despite the pile of hair I had left in the hospital floor beside my bed.

A few days after I went home, I noticed that my hair was noticeably thinner. I had never dealt with a problem like that before. After a few more days, I started to wear a hat to cover my bald spots. My mom came over with her clippers, but another friend stopped in to visit that day as well. I just wasn’t ready to shave my head, so we decided to wait a little longer.

Later that week, both my parents came over and spent the day with me and my husband. We had a great day together! And as the day came to a close, I told my mom it was time. I didn’t want to wait until the next time she came over, we needed to do it. She got the clippers, my husband and dad got the cameras and we got ready.

My mom had brought some hair color, so we tried that first. I couldn’t handle the smell though and, unfortunately, on my dark hair, it didn’t really show up anyway. So we abandoned that idea. We decided to try some different hairstyles instead. While my mom got the scissors and clippers ready, I took a selfie with my husband. I couldn’t help but think, ‘How’s he gonna feel having a bald wife?’ The answer, of course, is that he wouldn’t/didn’t care. He would love me bald or with hair down to my feet. My hair is not the reason he married me.

I sat down in the chair and my mom started to cut. She trimmed some of the length off first. Then she straightened it. Then we decided to shave half of it and see what that style was like. So far, she had been using scissors. Something she had used on my hair my entire life. Then she pulled out the clippers. The second the buzzing touched the side of my head, tears started rolling down my face. I tried to hold it in, hold it together, be strong. It’s only hair. But it isn’t. Long hair was a part of my identity. It was how I described myself to people, how I pictured myself in my mind’s eye. And when she shaved it, that was it. That part of me was gone forever. Wiped away like it had never existed.

We stopped the process then. No more pictures. I stood up and we all hugged and took a break from it. I told my mom to just shave it all off. No more playing with it. Just get rid of it and be done. She didn’t though. We talked about it. We made some jokes. We laughed. And i sat back down in the chair and got a mohawk. And I looked good with a mohawk! Then she shaved it shorter and shorter. Finally, she shaved it completely.

Fearfully, I looked at my husband and dad for their reaction. My husband said, ‘You have a really nice shaped head! You look good with a shaved head!” And i laughed and brushed it off. My dad said, ‘No, he’s right! It really does look good!’ My mom agreed. I couldn’t look in the mirror though. I couldn’t bear to see it.

While I went to take a shower to wash all the hair off me, my husband sat down and got a mohawk. He’s that kind of guy. He wanted to shave it all off, but I wouldn’t let him. My parents offered to shave theirs too to show their support. I told them if anything, they should all let their hair grow because I couldn’t.

While the water was heating up, I fearfully looked at myself in the mirror. I had to admit, it wasn’t as bad as I expected. Strangely, I looked like one of my male cousins and I had never noticed that he and I had any features in common. I got in the shower and started my routine. I washed my face and then…. Was I supposed to wash my scalp? What do bald people do? I had no idea. So I cried. I mourned for my lost hair, my life changing so drastically, for my husband having to watch his wife go through this, and for my parents having to watch their only child go through this. No parent should ever have to deal with their child, even an adult child, going through cancer once, much less twice. Then I let the water wash away my tears. I washed my scalp. I washed my body. I dried myself, dressed myself, and put a smile on my face to go greet my family. There was no need to make this any harder on them by worrying them all with my tears.

Three months later, my hair had grown out about an inch. It was soft and downy and brown, just regular brown. I was adjusting to life without hair. Unfortunately, to prepare for my bone marrow transplant, I had to have more chemo. They needed to completely wipe out my cells in hopes that the donor cells would completely take over. This time, i was more prepared.

Again, I was in the hospital following some very strong chemo. I had felt tired, nauseated, run down… all the things you’d expect from heavy doses of chemo. My hair started falling out in tiny, short clumps. I developed a pretty significant bald spot on the back of my head, like a baby, from lying in bed. My parents and my husband were with me one day when I asked the nurse for some clippers. I hadn’t asked my mom to bring hers, so we used the hospital clippers.

The clippers were tiny and pulled my hair.They really were meant more for a beard than an entire head, but I had to make do with what I had. This time instead of being upset and afraid of it, I took charge of it. I took the clippers myself and, feeling very GI Jane, shaved my own head. My mom had to finish it up and get the places I missed or couldn’t reach like behind my ears, the back of my neck.

When she finished, I went to take a shower. I scrubbed my head with a bath cloth and looked, amazed, at all the tiny hairs that fell out onto the cloth. I did it again and again, getting more hair each time. When I got out of the shower, my head was not just shaved, but smooth. It was as if I had shaved it with a straight razor. I’m sure after the first time losing my hair, my head felt this way, but i don’t remember it. Maybe I was too afraid or ashamed to touch it. I wasn’t this time. This time I was empowered. I was bald and I was happy. My hair is no longer part of my identity. It’s just hair.

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