As the date for my first chemo infusion swiftly approaches there were some things I needed to consider and a port that needed to be installed. There is a device called the DigniCap Scalp Cooling System, developed in Sweden and used in Europe since the 1970’s, that had finally been approved by the FDA for use in the US in December of 2015. The function of this cap is to keep your hair follicles cold enough that they shrink thereby absorbing less of the chemotherapy medicine which otherwise would kill the follicles, thus the hair loss. This silicon cap worn tight on the scalp is computer-controlled and monitors contact points on the scalp to continually adjust and keep the temperature of the scalp at 32F. There is an hour cooling period prior to the infusion that gets your scalp down to temperature and you wear it through the whole process and continue to wear it for a couple of hours after. They tell you that this devise will greatly reduce hair loss but in the brochure there is a whole lot more to it. For instance, you can’t color or bleach your hair, you can’t use most shampoos or hair products that have chemicals in them, you can’t use blow dryers or curling irons, you can’t tie your hair back in ponytails, and you need to comb your hair with a wide tooth comb several times a day to keep the hair that is falling out from matting with the hair that is still hanging on. This sounds like a nightmare because I’ve been dying my hair for thirty years, I know it’s grey and if I can’t keep up with the dye job it will grow out like a skunk stripe.
I needed to have someone give it to me straight, what the realistic expectation of hair loss is even with the use of this cap. I called up one of the nurses who works the chemotherapy wing and I asked her some really pointed questions. I could tell that she was trained to relay everything in a super optimistic way so I finally had to say, “Listen, I don’t care about the vanity of this situation. I need to know for upkeep and overall results what I can expect from this cap because I am considering shaving my head anyway.” She finally admitted that the cap was originally designed to save hair follicles from permanent damage not necessarily to stop the hair loss during treatment. She said I can still expect to lose up to 50% of my hair. This is information I needed because now it makes more sense for me to do what I can to simplify my hair care and to reduce the shock of handfuls of hair coming out. I decide to have my stylist (who also happens to be my sister) shave my head on all sides leaving a cute amount on top to play with. She did a balayage bleach treatment so that the hair will look more natural and not a stripe if it grows. This was a big deal just because I have long “blonde” hair and I’ve never cut it very short in my life. Here was another hurdle to overcome on my Fearless Journey Into The Unknown.
I think, as women, we tend to find our identities in things external. How we think we look to the world and to ourselves can either give us confidence or make us insecure. We might hide behind things like fashion, hair, makeup or high end bling. I felt empowered by my decision to face hair loss straight on by shaving my head but the minute I stepped out into public I had to face the reality that I no longer looked like “myself” and I could no longer hide behind that false sense of security. I had a really hard time with that person looking back at me in the mirror. She looked so foreign and she looked so masculine. It was hard to be out and about because I felt like people were assuming I might be gay or liberal. Yes, I said it. We, as a society, use looks as a means to stereotype people and it can lead to judgmental assumptions. These assumptions are not necessarily good or bad but they often aren’t true and when we deal with people based off of something that is not true it limits our ability to know them and love them for who they really are. I’m not upset by homosexuality nor by liberal belief systems, but I should be aware that I myself have preconceived ideas of what looks “gay” or “liberal” or whatever and how that effects my ability to accept and love people where they are for who they are regardless of how they present themselves. This is a lesson in love that I didn’t see coming and I’m so grateful for it. I need to learn to see people the way God sees people. I need to see their soul, their heart, their dreams, their hurts, their humanity. I need to see them the way I want to be seen, deeper than the external allows.
I John 4:7-8 NLT “Dear friends, let us continue to love one another, for love comes from God. Anyone who loves is a child of God and knows God. But anyone who does not love does not know God, for God is love.”
I Corinthians 16:14 NLT “And do everything with love.”
Luke 6:32 NLT “If you love only those who love you, why should you get credit for that? Even sinners love those who love them!”
John 15:17 NLT “This is my command: love each other.”
God is really working on my heart, melting away a hard shell that has been constricting and deluding me for years. Love is an action and an attitude. It’s an openness that wants to embrace all people for all that they are. It strips away external and embraces eternal (the soul). The only way to win people in this upside down world is to love them. I need that same curtesy, especially now. I’m broken wide open and feel free to freely love for the first time in my life, and I’m thinking of taking the hair one step further by dying it pink. God is good too. That first trip to the grocery store, a woman stopped me in the isle and said that she loved my look and she wanted me to know. I have had a lot of people tell me that this style really seems to embody my real personality and that I really can rock the shave. I have never had so many strangers bless me with compliments in my life. I take this as a hug from God telling me that I am still cute, I’m more than my hair, and He helped bolster my confidence.
**Update, about three weeks after my first infusion treatment the hair started falling out in clumps and handfuls. I have to testify that shaving my head the way I did was very much the right decision for me. It was alarming to see the amounts of hair in my hand and collected around the drain. I am very thin on the sides now. I think this would have been way harder to navigate if I was still trying to hang on to the illusion of hair. It is hard to keep up with the shedding even when I don’t have as much longer hair to worry about.
Desperately Seeking Sally 