Let’s Talk Hair Loss

When I was given my first initial diagnosis of acute myeloid leukemia, I was whisked from a hospital heart floor to a cancer floor in the matter of hours. I didn’t have time to process what it meant to have cancer. And within 48 hours, I started chemotherapy.

I started to worry about losing my hair and was told it was inevitable. I laid awake at night, wondering when was the right time to shave my head? Would I wear a wig? Hats? I had long blonde hair at the time and didn’t want to watch it fall out. I was days away from shaving it when my doctor told me that with the chemo regimen I was on, there was a chance I might not lose it completely, but maybe it would just thin.

I’m so thankful I didn’t shave my head ahead of time because that’s exactly what happened – it just thinned out. And for someone who has a LOT of hair, no one really even noticed, until I showed them the hair that was growing back.

Then I relapsed and I had to figure out how to deal with hair loss all over again and this time it was different. I had time to mentally prepare. I had time to forward think about what to do about it. And that made it even more difficult.

I first looked into using the cold cap, which is a cap that is put on during chemotherapy treatments, freezing the hair follicles, to prevent chemo from effecting those areas. I was all game until I talked to the company and they weren’t guaranteeing success with the cap and reminding me that it could prevent the chemo from working properly if cancer cells were near my hair follicles, since I had a blood cancer. I hung up the phone disheartened and knew that this was not the answer for me.

I was okay losing my hair because at that point, it was the least of my worries. But our daughter had a really difficult time with the idea. I knew from the get-go that I didn’t want to wear a wig because I haven’t heard real positive experiences with them – they were itchy and hot. And the thing is, I didn’t plan to wear my wig to bed, which Mazy could wake up and come in our room and see me without my wig then. For everyone, this decision is different and the reasoning for choosing what they do, is for them personally. I decided to just wear hats and keep a hat by our bed in the off chance Mazy would come in our room at night.

As I was admitted for my bone marrow transplant to fight my leukemia and realized that many shaved their heads prior to admission, I made the choice not to. I decided mentally I needed to cross that bridge when I got there. Though in reality, I think the thought of losing my hair was actually worse than actually losing it.

I’ll never forget, one day I was brushing my hair and I realized there was a lot more in my brush than usual. I fingered through my hair and started to get clumps. I told my nurse and decided that day it was time. Shave it all off. Going into it, I thought I would bawl during the process, but I felt just the opposite. I felt relief. I felt a sense of calm, as it was one less thing I had to deal with. The side effects of the chemo were enough and losing my hair was the least of my worries at that point.

I thought once it was all shaved, the process was complete and I just had to wait for it to grow back. That was not the case – I still had to actually “lose” my hair. The stubble still had to fall out, which wasn’t always the most comfortable. It would hurt to sleep on, as the hair slowly fell out. And let’s talk about itching and flaking! I never imagined the amount of skin I would lose off my head. I would get out of the shower, rub my fingers on my head, and just get layers of skin. I was not prepared for the aftermath.

Once the shedding of the hair and skin was complete, which took several weeks, the new growth started to come, but it was slow. Someone did tell me though, that once it starts, it keeps coming, and that is so true. It’s fine and at all different lengths, but it’s coming back. My hair is coming back blonde from what I can see, so it’s hard to tell that it’s even making a comeback, but our daughter is really hoping that one day I can get it as long and blonde as it used to be. I had weird patches of dark hair, which I like to call my natural highlights or low-lights for that matter, and so far that’s what’s coming back!

This is just my experience and every person is so different. I share this because I know there is someone out there who is walking this journey. Who has walked this journey and knows what I’m talking about. Who will be walking this journey and doesn’t even realize it yet. Cancer and chemotherapy don’t discriminate. It doesn’t matter if you have long blonde hair or short brunette hair. Chemotherapy is just nasty. Losing my hair though, became an external sign that I was fighting cancer. Not that I wished to lose it, but with my first diagnosis, nobody really knew I was fighting cancer because I didn’t look like it. Now I’ve lost my eyelashes, most of my eyebrows, and all of my hair, and now it’s clear Kristin is in the fight. But the fight is still the same. We can’t always judge from the outside because we may not realize what someone might be fighting within.

Hair loss may offer more outward sympathy from the public eye, but it can be a challenge from within too. I take off my hat and realize how long the process will be for my hair to come back; for me to look like “myself” again. But not only has my outward appearance changed (not to mention not having to shave my legs for months – woohoo), but my heart has changed too. I’m not as quick to judge someone with a mask or someone with a stocking cap on in 70 degree weather. Because that’s me. I realize I’m not just fighting this battle myself, but my family is too. They are adjusting to the new look and what cancer has done to our lives. But cancer has shown us what we can fight through with God on our side.

It is kind of nice not having to do my hair in the morning, with the biggest decision being what hat to wear. I may wear my makeup a bit thicker and earrings that sparkle (which wasn’t me before), but this is the new me. God has allowed cancer to change me outwardly and inwardly. As a 40-year-old woman, I am seeing that who God made me to be, is beautiful from the outside and inside. And learning to accept that about myself hasn’t always been easy. Cancer has changed so much about me and has challenged my faith to the core. But just as God numbers every hair on our head, and even if you don’t have hair, he numbers every follicle. Every cell in our bodies. He cares. Nothing happens outside of the will if our Father in heaven.

And what tremendous comfort that is, as I watched my hair fall out. As I felt and still feel the side effects of a bone marrow transplant. As I deal with the repercussions of heart failure. But God knew this time around, this relapse, things would be different. That this would be a battle. But He also promises to be in the battle going before us, behind us, and walking alongside us.

Maybe you have lost your hair after a hard fight against cancer. Maybe you are fighting a different battle where you have lost familiarity, routine, and the life you had dreamed of. But it hasn’t been outside of God’s will for your life. As it says in Proverbs 3:5-6, “Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

God has a purpose in all that he allows. It may not make sense this side of heaven, but he is doing it for our good, for the good of those around us, and for his glory. And this is a truth I have to remind myself daily and sometimes by the hour. I struggle with this in my own faith walk too, especially when I’m laying in a hospital bed, but it is for a GOOD purpose!