When I found out I had lymphoma, I was in denial. I honestly had no idea what it was. I remember sitting in the doctor’s office – my kids were in the waiting room with my husband and I was back in the office by myself waiting the results of my biopsy. I didn’t expect to hear cancer but I was braced for the worst. My doctor came in, led me to the chairs and we sat down. In retrospect, I should have see it coming. They don’t sit you down for good news.
As soon as I heard lymphoma, I kind of tuned out. I didn’t know what it was but I was relieved not to hear the word cancer. Then he started referring me to an oncologist and scheduling me for surgery. I remember going through the motions without really realizing what was happening. I scheduled the appointments and went out to tell my husband. Somehow I managed to make it out of the waiting room without crying which is unusual for me because I am normally a crier. This was the start of a roller coaster ride of emotions. Up to this point, I had convinced myself that there was nothing to be worried about but now it was real. I had to call my mom and dad. I had to tell my kids I had cancer. And I thought that would be the worst of it, but nothing prepared me for losing my hair.
All of my doctors told me, with ABVD treatments, to prepare for my hair to fall out on Day 16. That’s how it happens – it starts to tingle and then falls out in chunks. I went to the wig shop to find myself a wig to wear when it happened. While I was there, I met a lady 6 months post chemo with such short hair and she told me to think carefully about the wig I chose because chances are I would be wearing it for over a year – not just through chemo but also for the year afterwards as I waited for my hair to grow back in. I left the store crying. That was news no one tells you and I was completely unprepared for it.
But for me, Day 16 came and went. I was living in fear, tempted to just shave my head to avoid the trauma of waking up to hair on my pillow. But my hair didn’t fall out in chunks. Every other week I went in for treatments and my nurses joked about how well my hair was still holding on. Over the course of the next six months, I gradually lost hair. I tried things to hold on to it – used special shampoo, tried different hair cuts, drank supplements – and all that helped some. In the end, I lost about 1/3 of my hair and eventually started wearing a wig or a baseball cap because it was so thin. The wig gave me severe headaches if I wore it more than about 2 hours so I only wore it to church and wore my one baseball cap everywhere else.
I have my own theory on why I didn’t lose all my hair, as I shared in the youtube video at the beginning of this post, but the bottom line is NOTHING prepares you for the emotional stress caused by losing any or all of your hair. I looked in the mirror and I felt ugly. That was not me. In my mind, I was still the girl with long blonde hair that I had always been and when I walked by the mirror, that was a stranger looking back. It was the single most tangible reminder that I had cancer and it doesn’t go away as soon as the cancer is gone. You have to continue to live with it.
About 6 weeks after my treatments ended, I got a pixie cut to even out my hair. I couldn’t dye it blonde, my normal regimen to disguise my gray hair, because I was warned that the chemicals in your body from chemo could affect the hair dye and not react with it properly. I actually got a lot of compliments on this hairstyle, but I didn’t believe them. I just felt like the girl with cancer, who everyone feels sorry for, and people were just telling me it looked good to make me feel better.
About 9 months ago post chemo, I got my third hair cut. It was a pretty short bob with even shorter bangs but for the first time in over a year, it actually fetl like I have a hair style that I might have chosen. It was blonde again too. And just like that, I could finally move on. That tangible reminder is gone. Just yesterday, someone complimented my hair and for the first time in 18 months, I believed them. When I realized that, I started to cry.
I know I’m not the only person to feel this way: My hair was part of my identity. When I lost that, it was like losing a part of myself and I wasn’t prepared for it because it wasn’t in any of the books I read. No one mentioned how much that impacts you, how much it affects you mentally. It’s not a superficial thing. It’s not being vain. And you are not alone in feeling this way.