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It's All About The Hair

Emotionally, it can be just as hard to regrow your hair after chemo as shaving your head. Here are some great ways to support your friend through her hair loss/growth cycles.

In January 2022, my chemotherapy treatment began. About an hour before the drugs were given to me for the first time, my oncologist said, "You shouldn't lose all your hair, it should thin out. This won't be like breast cancer drugs where you have a completely smooth head." I had been very nervous about two things: would the drugs make me sick and would my hair fall out? So hearing him say this gave me a glimmer of hope that I might not be bald.

Looking in the mirror and seeing myself without hair took some getting used to. I was still tossing my head to get imaginary hairs off my forehead; I was still tucking nonexistent hair behind my ears; and I was still trying to wring out long hair when I finished my shower. Old habits die hard, but maybe I didn't want them to die at all. Although I came to embrace the buzzed look, I never allowed myself to give up those old ticks and the hope that I would live long enough to use them again.

My oncologist was right: my hair did "thin out." There were still hairs on my head while I was on chemotherapy, but not much. My best guess is that I lost 90% of my hair. The strange thing was that the hairs that remained continued to grow, and they also turned either pure white or grey. I had to trim my buzz about every 10 days or so just to minimize the awkwardness of what was going on in my head. To make myself feel better about the whole situation, I would tell myself that I was getting a glimpse of what I'll look like when I'm 70 but then would feel that dark cloud come over me as I would wonder if I would live to be 50, much less 70. I had to remind myself often that it didn't matter what my hair was doing, because as long as I was alive to complain about it, then I was doing just fine.

Our friends and family have to watch helplessly as we navigate the physical changes that chemotherapy brings with it. We have very little control or power over the side effects, and every day feels like a struggle to manage and endure them. If I'm being honest, I never went more than 30 minutes during my 12 weeks of treatments, where I was able to "relax" and focus on something else. Even something as distracting as playing my cello would bring with it challenges that had to be addressed immediately. Sometimes I resented the drugs but then would have to remind myself that this treatment was how I was going to survive. To the outside observer and blog reader, this sounds like a pretty straightforward and self-aware assessment of what was going on, but on the inside, we cancer patients are a hot mess. There is no explaining what we go through, and often the only people who really understand, who don't need explanations, are other cancer survivors and patients.

So, what if you have a friend or family member going through chemotherapy and they are losing their hair? What can you do to help ease their mind and soothe their soul? Here are a few tips to help you help them through this difficult side effect.

1) Remember: it's not about their ego

It is, but it isn't. In my case, I was also on steroids (given to me to ease inflammation and other painful intestinal side effects of chemo) which caused my face to balloon into what's known as "Moon Face." I had to cope with losing my hair, my eyelashes, and my facial features. For me, it felt like the hair loss accentuated the swollen face, and, unless I wanted to walk around like Lon Chaney, no scarf could hide it.

The patient is on a serious emotional rollercoaster. One minute they are excited to shave their head, the next they are terrified, the next they are sad, and the next they are angry. Those are just easy-to-name emotions. If you've never had chemo (count yourself very lucky) you have no idea how complicated this whole situation is. And that's ok. Just remember that you know it's complicated and be sensitive to the patient. Follow their lead with this one. If they want to cry and complain, let them. Don't try to soothe them. If they seem excited or proud of their bald head, celebrate with them.

Whatever happens, you are not there to lead the conversation. The patient is. Don't bring up their hair (or lack thereof) unless they do. It's not your hair, it's not your ego, it's not your journey. If your friend doesn't want to talk about their hair loss with you, don't be insulted, just respect their process. If you feel the need to talk about your friend's head, do it with a 3rd party.

There were only a few people I wanted to talk to about my hair loss. And thankfully, those to whom I did not bring up the subject, respected my privacy and allowed me to navigate my journey on my own terms.

2) Refrain from using the word "Still"

If there was one thing I hated, and I mean hated, was people saying, "You still look beautiful!" after my head was shaved. It always left me feeling annoyed. There are so many more important things going on during chemo than outward appearances. If cancer taught me anything it's that how I look means nothing to me or to the rest of the world. People didn't come together to save my life because I was pretty or attractive or whatever. They put their energy into me because I am me no matter what I look like. Telling me I was beautiful during chemo was people's attempts at complimenting me, but it had the opposite effect. Maybe other women enjoy being told this, but I didn't. Everyone is different, which is why I say "refrain from" and not "don't use."

Still is a tough one for me. I am definitely not alone among cancer survivors in thinking that I am a completely different person than who I was before my diagnosis. "Still" has no meaning to me now. Perhaps the assumption is that I would rather go back to a time when I didn't have cancer, a Lisa who lived 5 years ago or in the month before my diagnosis. But the truth is, I would not like that at all. I've been through a hell of a journey for the past 19 months, and I emerged as a whole new person. I'd like to think a better person. I'm more relaxed, more introspective, more everything. I've grown so much. Why would I want to take steps backward?

Saying "still" seems like a compliment, and maybe for some people it is, but for me it isn't. Saying "still" doesn't acknowledge the growth that's happened or the new person I am. If you try out this word on a friend and you see they don't respond the way you expect them to, then, as I said, just "refrain" from using it from now on. This may be a great opening to a conversation about personal growth with them, something they may be more inclined to talk to you about anyway.

3) Think hard about the compliments

When your friend is bald (or buzzed), there are certain compliments that you can give that will help bolster their ego during chemo. I loved when people said, "Without your hair, I can really see how bright your eyes are." When people focused on more permanent features of my head/face (eyes, smile, cheeks) it made me feel less self-conscious of my baldness. I did not like when people said, "You look great with a buzz cut!" It seems like a good compliment, but again, this was just drawing attention to the thing that was giving me anxiety in the first place.

Did you know I have a tattoo on my neck? I'm not even a criminal! I have Shanti (peace) tattooed just at my hairline. With hair, the only time anyone could see it was when I wore ponytails, but with a shaved head... well, it was there for everyone to see. I had my "power" tattoo before I had cancer. Many women get tattoos over their mastectomy scars or on their heads when they are going through chemo. I felt strong knowing people saw the tattoo below my bald pate, and I'm sure they all wondered what it said. So yes, I loved getting compliments and questions about the secret tattoo I've had for years.

4) Hats, Scarves, and Wigs

This probably seems counterintuitive, but again, this is a moment to "refrain" from assuming what your friend would like to do about their baldness. I never wore a wig, never wanted one, never even considered it. I was very proud of my bald head -- I felt like people could instantly recognize that I was sick by seeing my baldness, but I was also showing that I was strong and proud of what I was doing. It also lent itself to the camaraderie of all the cancer patients in the building. Like we were all part of a weird team.

Hats and scarves, though, were something I wore. Most of the time it was because my head was cold! And as the spring months pressed on, they were important as sunscreen. I often got chilled when I was getting my infusions, so I would wear them at the infusion center. If we were going somewhere not medical-related, I might wear a hat just to keep strangers from staring at me. But, overall, I would say I wore hats 40% of the time.

Some people wear something all the time and others never wear anything. That is their choice! Again, this is about not making assumptions. Ask your friend, directly and compassionately, if they would like any head coverings. If you're making a gift basket, include a knit cap amongst the other items. Sometimes, they might be afraid to shop for head coverings or feel embarrassed to ask you to knit something for them yourself.

What's always important to remember is you may be making assumptions about what they're doing about their baldness based on your own insecurities about what it would feel like to be bald.

5) Remember no one chooses to have cancer

Now that my hair is growing, I am able to start letting go of and facing down the difficult emotional aspects of fighting for my life. I'm seeking help for my head -- which is something I don't think a lot of cancer survivors make known about the end of their primary journey. We spend so much energy trying to survive the cancer that we don't have any left to actually deal with it. When the deadly danger has passed, and we have time to breathe, the tough effects of this experience begin to rear their ugly heads.

With every month of hair growth, I can feel that I am putting distance between myself and the cancer. I can actually measure that distance against the length of my hair. It's been growing for almost a year now and finally, something moves when I toss my head because there are hairs tickling my forehead. I'm relieved and excited and honestly, my hair can't grow fast enough. I want my baldness to be something so far in the past that I can't remember what it felt like. I don't want to be reminded of it by anyone. Ever.

"You look so cute with short hair!" A lot of people have been saying this to me lately. I say, "Thank you," and smile and accept their compliment because it is a compliment. A real one. And I have to practice accepting that compliment. But I don't think I accept their compliment with the right amount of enthusiasm or rather a normal amount of enthusiasm. I'm a terrible actor. I just hope I haven't hurt too many people's feelings with my blase attitude. Because what I really want is to have my hair back the way I want it to be. I didn't choose to have cancer and to be bald. I didn't choose to have a short haircut. None of this was my choice, I'm just trying to make the best of the situation.

The moral of the story is to be there for your friend in the way they need you to be there for them. What works for one person may not work for someone else. Only you know what your relationship with that friend or family member is, and how much you can be a part of their hair-loss experience.


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