Sunday, July 12, 2009

CHAPTER 9: HAIRLESS & DEALING WITH IT

Breast Cancer and Chemotherapy
Took away her crown and glory
She promised God if she was to survive
She would enjoy everyday of her life
On national television
Her diamond eyes are sparkling
Bald headed like a full moon shining
Singing out to the whole wide world like HEY...
I am not my hair
I am not this skin
I am not your expectations no no
I am a soul that lives within
"I am not my hair" by: INDIA.ARIE
“You are going to lose your hair”…these are very difficult words to fathom. It is not like I have not seen pictures or movies of bald cancer patients before, but this was MY hair we were talking about, and my brain did not want to register the fact that it would soon be gone. Plus, I kept trying to convince myself that this should be the least of my worries; that I should not be so superficial and turn my hair loss into major drama. However, I felt like my hair was part of my identity, part of who I was, and that by losing it I would be losing part of myself. It did not help that I thought of my hair as my best physical characteristic-I was going to lose my long thick beautiful hair. I used to always joke about how thick my hair was; I would tell my friends who had thin hair that I could donate some to them since I had enough hair for four people. It seemed that now I was not going to even have enough to cover my own scalp. Life is so weird sometimes.

I was told that the hair loss would start 2 weeks to a month after my first chemotherapy session. I heard of people who shaved their hair so they would not go through the emotions of losing it little by little, and thereby they felt like they still had some control over the situation. I could not do that, I wanted to savor every strand of hair I had left until the very end. What I did do though was cut my mid-back length hair to chin level. I have always been afraid of getting a short haircut, and I thought this was the best time to experiment and try the new bob haircut that was in style. I mean the worst that could happen was that I was going to hate it, which would be easy to fix since I was due to lose the rest of it in a couple of weeks anyways!

I got the haircut, and of course to make matters more difficult, I fell in love with it. A couple of days later, clumps of hair started making their way into my hands, my brush, and ultimately the wastebasket in my sister’s room. Everyone talks about their first shower when the hair starts to go- it really is not fun seeing large amounts of hair coming off your scalp as you shampoo. I did not want to wash my hair anymore, and when I did I would go into my sister’s room alone, shut the door, sit in front of the mirror looking at my reflection, and just cry as more clumps of hair came out. My hair was being found everywhere around the house but the one place where it should be-on top of my head! I would wake up in the mornings with my pillow covered and covered with too many strands of hair; I eventually got tired of cleaning the pillow and just left the hairs alone. The living room rug was littered with strands of blonde-highlights. It seemed like there was no end to my thick hair. I kept my hopes that maybe because it was so thick I would not lose all of it-if I could only hold on to that thin layer left of it I could handle it. I stopped brushing my hair, and tried to not run my fingers through it. By the fourth chemo session, I was left with a very fine layer of hair that exposed various parts of my white scalp, but I still had those strands that I could touch and reassure myself that I was not a bald chick yet. I would wear baseball caps and still look like a normal person with very thin hair (taking the cap off though would show a different story.) Since it was this late into my chemo treatment and those strands of hair that I had left were still fighting and clinging to my scalp with all their might, I just figured this was the end of the hair loss. However, even though it had slowed down a lot-probably because increasingly there was less and less hair to lose, the hair loss had not stopped yet. Creeping up on me slowly, by chemo #8 (the last session) it seemed that that hair strands I had left could be counted on one hand. It was not till then that I held up the scissors and told my sister to cut the chin-level strands to make them short, because now they were only annoying reminders of the long beautiful hair I used to have. Yes, I did not have the courage to shave my head, but sometimes I think maybe these people had it right; maybe things would have been easier if I had not made myself go through that tormenting experience. I know when we think about it, we think it is only hair; but that was one of the most emotional experiences of my life. It was so emotional that even writing about it now (over 3 months after my last chemo session, and after I already have gotten back a good amount of thick short hair) I cannot help but cry and feel depressed.

I was given some wig stores’ information at the hospital before I left. So, I wanted to get that wig as soon as possible thinking I would be wearing it at all times. My sister came with me as we made the trip to a small wig store at the local mall. We knew nothing about wigs, all I knew was that they had ones made of real hair which were more expensive than the synthetic ones, but supposedly better. We walked into the store that was filled with wigs of all kinds, and we wanted to have some fun. However, the lady working there stopped all the fun in 2 minutes, as my sister reached her hand to touch one wig, she half-yelled at her with a thick accent “no touching.” I looked at my sister and we both almost broke out in laughter as we noticed the sign right in front of that particular wig reading “do not touch the wigs.” Then, we asked her for the price range of the wigs and our hopes of having fun were further squashed as she told us that the cheapest wig cost $199. WHAT?!!! No one told me it was going to cost that much money to get a stupid wig! My sis and I saw the perfect wig; it was a little longer than shoulder length, wavy, and light brown-it looked so much like my real hair. As we were admiring it from afar, we asked the “nice” store lady for the price of that one, and she replied “that’s too expensive for you, that one is $400.” ‘God please give me the willpower not to punch this lady in the face!’ I thought to myself. I mean, she was not being insulting because we had told her what we could afford. Yet, this was not a purchase I had ever imagined myself making, and her tone and snippy attitude was not helping. She finally pointed us to the short wigs that were in our price range. I saw one that was medium brown with reddish tones, and a style that looked cute. I asked her if I could try it on. As the lady helped me put it on, my sister fell in love with it immediately. I just felt weird. The wig was nice, it framed my face well, and the color was great. But, what the hell! I was getting a wig?! I was trying on a wig next to an old Asian man who was looking for something to cover his balding head. I was trying on a wig at one of those mall stores with big glass windows where everyone walking by can see in, and I just suddenly felt so self-conscious. I wanted to get that wig and get out of there pronto. The store lady made sure to inform me that all purchases were final, but as she was giving me the receipt she mentioned that some health insurance companies reimburse for at least part of the cost of the wig if it is for medical purposes. Hmmm, at least she was nice enough to tell me that.

I later learned on my own and with experience, that I probably should have not purchased that wig. Yes, it was one of the best that I owned, and it looked natural when I wore it. However, I soon realized that wigs are itchy and uncomfortable. Especially when worn on top of a bald scalp. I was having headaches from the chemo and all the drugs I was on, and having a tight elastic band wrapped around my head was not helping. So I ended up wearing a wig only when I went out in public to places other than the clinic, which was very rare. During the 4 months of chemo, I avoided people, other than my family, like the plague. Not only because I did not want to see anyone in the state I was in, and because my friends were nowhere close to Arizona anyways, but also because of my low white blood cell counts. You see, white blood counts go down tremendously as a side-effect of chemo treatments, sometimes reaching zero. White blood cells fight infections, and I had very few of those around, so any contact with people’s germs or sickness could put me at a risk of a serious infection. In fact, I developed a fever the week after my first chemo session because I did not take this germs thing seriously and ended up being put in the hospital for another five days. They could not find any source of infection to be causing my fever (it was probably viral), but they would not take any chances and they started flooding me with broad-spectrum antibiotics for those days that I was in the hospital. This, in turn, freaked me out because as a medical student I knew how one could develop resistance to antibiotics. I did not want to be given so much antibiotics, so I decided to ban all contacts with people unless absolutely necessary. It was easy to do, since my hospitalization scared my parents more than me, and they turned our living room and the loft where I slept into a sterile environment. They told relatives and friends they could not visit and stay over anymore until I was done with chemo. They stopped kissing me, and they would only hug me when they have showered and washed their hands. One of the couch chairs was designated as “sterile: Nancy area only,” and my mom covered it with a sheet that she washed every few days. Yes I had become bubble girl.

However, as extreme as what we did was, and way beyond the doctors’ recommendations, it worked. I was not hospitalized anymore after that one time, and I completed the rest of my chemotherapy without any complications or infections. On top of that, I did not really mind the not seeing people part, because I did not want anyone to see me in that state and I did not feel very social during chemo.

Anyways, I later searched online and found this wigs website that could help me expand my wig collection for fun without hurting my bank account too much. It was time for me to have some fun with this, and it was also time to give synthetic wigs a chance. I got two more wigs, one that was long brown hair that cost about a fraction of what that mall store wig had cost. The other was a HOT PINK wig that I felt the need to get for no reason at all other than that I wanted it. Yes, you read that right, it was hot pink. My 16-year-old brother thought that I looked like Lady Gaga when I wore it, which he meant as a compliment. I loved that wig. First time I wore it in public was to my last radiation session on May 18th, and the radiation oncology staff loved it. They took pictures and told me it made their day. Some even told me the color looked good on me. Hmmm, I may be dying my new hair hot pink. I have two little cousins here in Arizona (11 and 7 years old), and when I wore the wig to visit them one day, they ran to their room and brought this DVD cover of a kids’ movie (I cannot recall the name) to show me where the star of the movie is wearing the exact same color of my wig in almost the same style, so naturally they thought I was the cool older cousin.

The final wig to add to my collection I acquired for free. It was a pale blonde Merlyn Monroe-style curly wig. It was so cute. I obtained it through a program I attended hosted by the American Cancer Society, called “Look Good, Feel Better.” They had a number of wigs there they were giving out for free, along with the brand-name make-up collection each attendee gets that cosmetic companies donate to this program.

But, since I already mentioned that wigs are not comfortable to wear, I experimented with other modes of covering my balding head. I bought different colored bandanas which became my favorite, because they were comfortable, easy to wear, and light especially for Arizona’s weather. I also had several baseball caps, and a couple of cool stylish hats. Finally, I had long scarves that I tied different ways to make them into some sort of style. I was doing everything in my power not to lose my fashion sense, especially after I was done with chemo and feeling up to going out again.

The hair has grown back. It is still boy-length, but at least I don’t look horrible in it. One advantage that I can see now: I get to experience every possible hair length/style. I still miss my long hair every day. I miss running my fingers through it, I miss having something to brush every morning and night, and yes I even miss flat-ironing and styling it. I miss feeling feminine as my hair strands danced in the wind, and wisps of it brushed over my face. But as one of my close friends told me one time as I was complaining to her over the phone about how slow my hair growth was that she did not care if I was bald for the rest of my life because “bald Nancy is better than no Nancy.” Of course, I laughed at the way she said it with such a passion, but I also understood what she meant. I am surrounded by people who love me, and would rather see me bald every day than not have me around. I know the pain they experience when a thought of not having me around ever crosses their mind. I hate to have caused so much pain to so many around me. So, I am doing my part, and trying to handle my hair drama with grace. Meanwhile, I am hanging on to a phrase another good friend told me when she saw a picture of my current hair-she said “you look hip in this new hair.” That is a lot better than hearing “you look like a boy” which was my fear…so for now, I will accept the fact/fabricated truth/plain lie that I look trendy, and continue praying that the day will come when I have hair long enough to run my fingers through it…


God is faithful and will not let you be tried beyond your strength;
but with the trial he will also provide a way out,
so that you may be able to bear it
1 Corinthians 10:13

2 comments:

Bekah said...

Hey Babe,

My email is:

RebekahFurey@mac.com

Love ya,

B!

Anastasia said...

Hi Nancy,

I just stumbled upon your blog for the first time today. I keep noticing the Florida-Arizona conneciton. From what I gather you found out about having HL in Florida, but are being treated in Arizona? If that is the case, I think it is an interesting coincidence, because I found out about having HL while on vacation in Arizona, then flew back home to Florida for treatment. Anyway, I wish we didn't have to be dealing with this stuff at all right now, but it is nice to meet you! Best of luck with treatment.