Hairy, Hairy, Quite Contrary…


When people think of what cancer patients look like, one of the first things that comes to mind is often baldness. It is a difficult thought not only for the cancer patient who has or will loose his/her hair, but also for the person who either associates baldness with cancer patients or feels awkward, pity, sympathy or some other negative emotion when looking at a cancer patient who has lost her hair to chemotherapy. On December 29, 2014, the nurse at Moses Cone Cancer Center during the chemotherapy informational class told me that I would definitely lose my hair due to R-CHOP. Upon hearing those words, I experienced my first hot flash where I immediately felt like every inch of my body was on fire while simultaneously using every fiber of my being to remain in control and not cry. In this same moment, out of the corner of my eye, I saw alligator tears forming in my mother’s eyes, but in the same way I refused to allow myself to cry and fall apart when I received my diagnosis, I somehow found composure and formed words of acknowledgment and made it appear that I was okay, as if I had just been told a mundane fact like humans breathe oxygen.

It was a concern lingered in my mind from that point forward. The thought of losing my hair and going through such an obvious physical change in addition to the anticipated nausea, vomiting, fatigue, mouth sores, digestion issues, and dry skin seemed particularly unfair. I worried about how I would see myself, how others would see me, and if it would affect Jason’s attraction to me and the physical side of our relationship. I debated getting a wig to deal with hair loss, but I knew that it was almost impossible to get a wig that would remotely resemble my hair. Additionally, I determined that I did not want to deal with the upkeep of a wig when I would be struggling to keep myself healthy otherwise and that I would instead use a variety of head coverings to protect my head and focus all of my energy into staying healthy physically, emotionally, and mentally throughout treatment.

After receiving my first infusion, I anxiously awaited the significant hair loss, while quietly hoping I would defy all odds and keep my hair. Starting on day five (Saturday, February 7), I noticed that more hair than normal came out when I took my hair out of a bun when I woke up. Over the course of the next week, I continued to have a bit more hair than normal falling out when I would put my hair up or brush it. The following Saturday the 14th (day twelve), hair started coming out in more significant amounts when I showered, brushed it, or put it up, and I could tell the shedding had taken my hair from being the very thick hair I had always had to more of a normal thickness, which of course made me have waves of panic. I continued on hoping I could at least make it another week before having to shave it, so I wouldn’t have to do it midweek and could use the weekend to hide from the world and adjust. By Monday morning (the 16th), I decided to cut about 4 inches off the length of my hair to camouflage the thinning. Unfortunately, I only made it to Tuesday the 17th, which was day fifteen of my first cycle and the day Dr. Park predicted I would see the significant hair loss. Tuesday, I was fortunately home from work because of snow and ice, but I started the day by losing probably 150-200 hairs through the course of showering and drying my hair. Throughout the day, I had hairs falling constantly onto my arms and the couch as I sat working from home. I spent the day panicking and pleading with my body and the chemotherapy drugs to just allow me to keep my hair through the weekend. Around 4:00pm, I made a phone call, and the act of holding my iPhone to my ear caused over twenty hairs to come down with my phone as I pulled it away from my ear. Over the course of the next ten minutes, I lost over 200 hairs, dropping them into the toilet so that I could see how much I was actually losing at once and determine if I had reached that point when I had to shave my head. After seeing that large amount of hair in the toilet, and knowing that each time I touched my hair 10-20 more strands would fall out, I knew I had reached the point that I had to shave my head. I sent Jason a picture of hair in the toilet and he confirmed that it was time, so I called my salon and asked for an emergency appointment. The client coordinator informed me that Jay was not available that night nor was any other stylist due to the icy road conditions. After choking up, explaining why I needed an emergency appointment, and apologizing for sounding like a blubbering idiot, I made an appointment with Jay for the next morning at 9am.

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Sorry for the gross toilet picture, but for anyone who ever has to loose hair to chemotherapy: you’re not alone when you see this much hair loss

 

After regaining some composure, I realized I should forewarn Jay before I would go waltzing in the next morning in my inevitable less than composed state, so I sent him a message and to which I got an immediate response. He assured me he would help me through it and also said that he was still around if I wanted to come in then. I was greatly relieved and told him I’d be there in 20 minutes. I transferred the salmon from the oven to the sous vide, so it could continue to cook (and so I wouldn’t repeat the mistake of leaving fish sitting at room temperature for 2 hours like I did the night Annabelle had her FCE), and grabbed six hats because I couldn’t decide on one.

As Jason and I drove the less than 10 blocks to the salon, I oscillated between holding my breath and blowing it out deeply. When we pulled into the parking lot, I got out of the car and quickly walked in, so that I couldn’t talk myself out of going through with it. Upon entering, I saw Jay and started to walk back to his normal station, which was beside two other women that were having their long hair colored and cut; however, he stopped me and guided me to a station across the salon to give me a bit of privacy. I did my best to not tear up, but ultimately failed as I took my hair out of a bun, with another 20+ strands falling out in my hand as I did so. My voice cracked and tears fell down my face as I held the strands in my hand and explained the amount of hair I had lost that day alone and that I needed him to shave it to spare me from further days of dismay and great hair loss. He gave me a box of tissues then went to get his clippers and beers for me and Jason, then came back and asked whether I wanted to face the mirror or not, and explained his understanding of the rationale behind both options. I decided that it would be more traumatic for me to watch all of my long blonde locks fall to the ground and my scalp being revealed for the first time in 28 years. As I sat facing Jason, I had stopped crying and reached a point of at least partial acceptance of what was happening. Jay gently shaved my head chatting with me and Jason, and in less than 10 minutes, I went from being a seemly normal 28 year old woman with long blonde hair to finally looking like a cancer patient without hair.

After he was done, I decided I didn’t want to turn around and see all of my hair on the floor, so as Jay swept it up and took it away, I quickly put on a hat and declined his offer to use the hand-held mirror to examine my shaved head and exposed scalp. After I put my hat on my head, I realized I had somewhat unconsciously faced one of my biggest fears of letting Jason see me without hair and be there with me in the process of getting rid of it. I also finally understood a previously unrecognized depth to our relationship that in the moments of making the decision to go get rid of my hair and actually sitting through it, that I didn’t want to do those things without his input or without him with me. While Jay was picking up my discarded hair, I gained the courage to peak at my head without removing my cap entirely, but no more than that.

After it all, Jay, Jason and I sat and talked. Jay showed me great compassion by taking time to pull up a chair and just sit and talk with me, discussing everything from The Bachelor, to new restaurants in town to his experience working with other women going through physical changes due to chemotherapy. He expressed his understanding of how traumatic the loss of hair is because hair is a physical expression of identity and femininity and reflective of many complex emotions, choices, and experiences. The validation of my emotions that Jay provided me at that moment was the one thing I needed more than even a hat at that point. Knowing that someone else truly understood my feelings and the gravity of them allowed me to breathe easier and be ready to face my new look and understand and deal with all of the thoughts and emotions I was having and would continue to have.

Jason and I went home, and I was somewhat numb for the rest of the night. I was unable to do more than wear a hat and curl up on the couch with the girls and watch tv until I fell asleep. I later awoke to Jason playing video games with my dad and another friend and then moved to bed where I laid pushing away feelings and Jason at the point he came up to check on me. I awoke the next morning and felt incapable of moving. I felt like there should be something much more wrong with me than just the loss of hair. Jason stayed in bed with me for quite some time trying to figure out any bit of what I was thinking or feeling and providing every bit of reassurance and comfort. After a great deal of patience and reassurance, I decided to start my day and shower with Jason, showing both of us my bald head, for the first time completely for me and for the first time for Jason since the clippers completed their job the night before. As I saw my head in the mirror, I refused to cry but felt tears welling. In the shower, I didn’t know whether to use shampoo or body wash on my head (hair), so I settled on both. After spending two minutes of frustration shaving my legs where hair was still growing, I got out of the shower and faced myself in the mirror. I felt detachment and confusion. The reflection of the woman I saw the in the mirror did not look like the person I knew or had sculpted over the past 28 years. I put my serums and lotions on my face and head and walked away and put on a beanie, leggings and tunic, because I didn’t feel worthy of wearing “real” clothes without hair and knew I wasn’t going into work. Throughout last Wednesday, I made the effort to touch my head without hair and become accustomed to that and to seeing myself without hair in the mirror anytime I went into the bathroom. I found relief in being able to sit and work without strands of hair falling onto my arms as I worked and in knowing the anticipation of losing my hair was gone, as was my hair.

I knew at some point I was going to have to go in public again and be comfortable with being bald. I decided my first step would be going to a 4:30pm gym class, which I thought was being taught by this sweet 60-something woman that would make a fantastic grandmother. I got dressed wearing my new Under Armor cancer patient workout beanie (which has the pink breast cancer ribbon symbol on it….breast cancer dominates the market as far as cancer clothing and awareness goes), and went to my class. After I showed up, I realized the instructor was not sweet Donna, but energetic Raffi, who is a 20 year old male college student, who teaches awesome HIIT classes, which are normally my favorite. After I walked in and saw Raffi, I panicked, having flashbacks to being in sixth grade of major social anxiety about the way I look in addition to spending the next hour in front of a room full of mirrors. Fortunately, I made it through the class, forcing myself to take my normal spot in the front of the room and in front of the mirrors, receiving encouraging words and looks from Raffi to keep up with him and push myself. I left the class feeling proud of my physical achievement from the work I had done through class, hitting my pre-cancer levels of exertion and not being ashamed or embarrassed of my new capped look in class.

After facing the gym on Wednesday, I realized I must go to work on Thursday. I got up, got dressed, put on make-up, and left the house Thursday morning despite single digit temperatures. I went through work Thursday without much comment from coworkers, beside from one who is a very honest, emotional and reactive person, who asked if I had intentionally shaved my head or if all of my hair fell out. After work, I again went to the crowded 5:30 HIIT class at the gym and went home, feeling very accomplished. Despite what I would classify as accomplishments and triumphs, I had moments throughout the day where I worried what would happen if my hat fell off and coworkers saw me hairless. I saw myself in the mirror changing for the gym, and I felt sad. I saw the person in the mirror and instead of recognizing myself, I saw someone that looked sad and that I pitied, but I knew I had to continue on, so I did. Friday, I made it through another day in public, going to REI to purchase more comfortable, seamless hats because in two days, I realized that hats with seams would hurt my sensitive head that was still losing hairs and had a tender scalp. After work, I found myself more able to take my hat off and see my head in the mirror and be in front of Jason without hair.

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This is the most vulnerable moment of my life. Bald head, port showing. I gathered ever bit of my being to take this and I did it for every woman that chooses to overcome something significant.

 

Also over the past several days, I have started to show the people I trust most what I look like without hair, despite hating it and thinking I look either sick or like a drag queen when I try to put on any amount of make-up to make myself appear as normal as possible. The handful of people that I’ve been brave enough to show my most vulnerable self have shown me more love than I deserve, which I’m not sure I can fully feel. Despite every thought I have of myself now, Jason has somehow been able to look at me without a hat and tell me that he thinks I’m beautiful, which confounds me. As we got dressed to go to dinner tonight, I found myself getting frustrated trying to find clothes to wear because I don’t feel like I can wear my normal girly dresses or flirty tops, because I don’t have hair, which I know is silly and unfounded, but it is something with which I’ve struggled for days now and can see myself continuing to struggle. I only want to wear leggings and tunics, and I don’t feel pretty enough to wear my clothes. Then after every point I have a thought of this type, I feel stupid for being so shortsighted and superficial.

I have had eleven days of feeling normal physically and being able to push myself at the gym and run 3.5 miles easily and go 85%+ in HIIT classes, and am beyond thankful for that. I feel conflicted for having any negative emotion because I know that I am fortunate to have the relative physical health I do now. But in the past several days since losing my hair, the worst part has not been seeing my scalp or the fear of other people seeing me as a cancer patient. I’ve realized that all of the fears I had regarding losing my hair led up to greater feelings than I could previously conceptualize. Tonight as I undressed, brushed my teeth, and put on my pajamas, I finally figured saw the root of all of the fears I’ve had throughout my journey with cancer. When I looked in the mirror tonight, all I could see was death. I finally recognized that what I was seeing as I stood in the bathroom in my underwear with everything else exposed, including my deepest thoughts and soul in that moment: I saw the cancer that had been killing me; I saw the chemotherapy drugs that were simultaneously killing me and saving me; I saw the fact that my chance at other cancers is now greater; I saw the fact that my lifespan is now shorter than it otherwise would have been, and I hated every realization. This is the fear that had plagued me all along. It was one that I had refused to recognize and the one that I cannot fix. It is the one that I cannot convey to others, and it is the one that I face alone. Despite all of the support and love that I have continually felt, this is the part that I face alone; it is my mortality and the cognizance of it.

 

 

 

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My first day to work after headshaving (at 6 degrees)

 

 


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4 thoughts on “Hairy, Hairy, Quite Contrary…

  • Tanya Robe

    Hi Kaley, I just wanted to take a moment to tell you that you are in my thoughts and prayers. I can tell by your stories related to your cancer, that you have a wonderful attitude. As a 3 year cancer survivor myself (Stage 3 Invasive Lobular Breast Cancer) I can tell you that “A Possitive Attitude” is huge! Losing your hair is scary, but I can tell you at least with me, I now realize it’s just hair. I won’t lie I am a pretty vain person, pre-cancer I never went out without makeup and every hair in place. Now I realize it’s the inner beauty that is so much more important than the outer beauty. I’m rambling and I certainly didn’t mean to do that. I just wanted to let you know you are in my prayers. You will have tough roads ahead but you can do this!! Keep your positive attitude and remember you aren’t doing this alone, lean on those that love you. Ps we have a mutual friend Brittney Crain 🙂

  • Gary Hooker

    Kaley…you do not even know me but I am a friend of Daniel and Tessa by way of Tiffany and Julian and Susan. Tiffany and Julian (and Kate & Laila) are my wonderful neighbors, who I love and have declared to be my family…along with Susan of course. I have kept up with you through Daniel and all the others I just mentioned and I want to say that I think you are a great inspiration to us all. Thanks for being a shining light to someone you don’t even know. I look forward to seeing you in the future and giving you a great big hug. Love to you from a guy known (by all those we mutually know) as The Good Guy! Love to you by Friend…Keep On Keeping On!

  • Joanna Kanter

    This post is absolutely incredible. Thank you for sharing your innermost feelings and experiences, it honestly feels like an honor to be able to read this. I think you did such a great job of describing what you’re going through. I was really touched by the last part when you talked about looking in the mirror and having these deep realizations about what is happening to you. I think about you every day and laugh at myself for barely making it to the gym due to laziness (and I also blame the cold weather). You’re amazing and inspiring, I love you so much. Xoxo