Second Round Down

All of my hair is now sitting in a brown paper grocery bag.

Before I continue my hair saga story, let me just say this. So far, losing my hair has been the worst thing about my cancer treatment. And if having a bald head for several months is as bad as it gets, I am very lucky---lucky indeed.

So, the night before my second treatment, I couldn’t sleep. I was worried about everything: would the nurse be able to access my port; would it hurt when she stuck the needle in my port; would the Rituxan start hurting my throat like it did last time; would I have unusual side effects during the infusion. In addition I was very uncomfortable. I couldn’t rest my head down flat because my hair was all balled up into 3 or 5 matted nests. (My wig stylist friend later told me this is what happens. As the hair starts to come lose from the head, it works its way back up to the scalp and starts balling itself up.)

After only several hours of sleep, I got up in a panic about 8 AM. We needed to be at the doctor’s office at 9 AM to begin the infusion treatment. I looked at myself in the mirror and broke down in tears. I needed help with my hair. I couldn’t get a comb or brush through my hair, much less my fingers. David was desperately asking how he could help me, but there was really only person for the job and that was my mom. At this point, I tapped into that understood agreement between my mother and me -- the fact that we would do anything for each other night or day. I called my mom in tears and told her I was in desperate need for help. I needed her to come over (she lives just minutes away from us) and help me brush my hair out… I mean literally brush it out. I knew that the process of detangling my hair meant that it would all come out. I needed my mom’s help for this. She herself needed to leave by 9:00 AM to teach her class at the local community college, but by 8:20 she showed up at my house ready to help.

I had set up the bathroom with everything we would need: brush, comb, scissors, shaver, paper bag and a chair for me to sit in. When my mom first saw all the bald spots and matted clumps of hair all over my head, she gasped. I just hugged her. We started to cry, but we controlled our emotions because we had to work fast. She started to comb and brush the matted hair out and just as I anticipated, all my hair started coming out. I asked her as she was struggling with my hair if in her wildest dreams she thought she would be ever doing this. She said, “Never, especially for my own daughter.”

By the time she was done, she had filled a paper shopping bag full with my hair. I now look like those men that flip their hair over their heads to cover bald spots. My entire scalp is now like this. I only have loose strands of hair covering my bald head.

The actual infusion process went well. I slept through most of it. I was cold, but there were plenty of blankets to keep me warm. For the first time, I chatted with a fellow infusion patient. This other woman told me that it was her sister who flew in from Oregon that painstakingly and lovingly brushed her hair out. We agreed losing our hair was one of the hardest parts of chemo treatment, but it was easier letting go with the help of a loved one.


Here I am during the second infusion treatment now wearing a head covering. I am borrowing this cap from a friend who bought it in China. The cap makes me happy. It is bright and colorful.

Cool!

I have been in denial about my hair loss since my last post. I have not brushed or washed it in several days since this is the way it comes out. I have been keeping it in a hair net so that all my loose hair doesn't keep falling all over the place.

Yesterday I was forced to deal with my hair because I was going out for a doctor's appointment. I started brushing it, but I had to stop because my brush filled completely with hair after only a few strokes. Then I got fistfuls of hair just by running my hands through my hair.

Later in the afternoon, I went to pick up Emma after school. As we were leaving her building, Emma noticed that I was running my hand through my hair and getting clumps of hair. She asked me about this. I have been wondering how I would tell her about my hair loss. I was worried she would be scared or freaked out. I decided this was the best time. I told her casually as I opened the car door that the medicine I was taking was making my hair fall out. She stopped and looked at me and asked, "Are you going to be bald?" I looked back at her blankly and said, "Yes." Her eyes lit up. Emma responded with, "COOL." All of a sudden my hair loss was "cool." In the eyes of a 6-year old, a bald mama was "cool."

I continued to pull strands of hair out as I was driving home. Emma asked, "Can I do that?" Emma thought it would be fun to pull her mama's hair out. So now Emma's treat is to sit and pull clumps of hair out of my head. Sometimes she pulls hair that is not yet loose. At this point I yell, but it feels somewhat nurturing to have my daughter gently pull at my hair. She is helping me to see the inevitable novelty of my loss.

Alopecia

I went to the doctor’s office on the Tuesday before Thanksgiving to attend a Chem 101 review session, I mean a Chemo 101 review session. This medical group does a great job of preparing patients for the side effects of chemo. I have already had one round of chemo, but I just wanted more information. And like many a college review session, I happened to be the only one there. Perhaps the other chemo students went home early for Thanksgiving ; )

So, I basically got a 1-hour private consultation with an oncology pharmacist. The presentation was tailored to me and I got to ask lots of questions. Toward the end of the session came the topic of alopecia. This means hair loss. The pharmacist was surprised that my hair had not fallen out yet. I told her that it seemed like more hair was coming out when I brushed or washed it. She told me it would come out in clumps. Like I would wake up in the morning and my hair would be lying on the pillow in a clump! It was at this point that I wanted to cry.

I think I have been very good about all of this up to this point. I mean we are all familiar with fatigue, loss of appetite, nausea, and flu-like symptoms, but hair loss is something completely foreign. How does it really happen? One moment I am walking around with hair and the next moment I notice clumps of hair on the floor? Will I be completely bald or will I have a few strands left? Does it happen at once or over a series of days? I think not knowing the exact process scares me.

After the review session, I had a little over an hour before I needed to pick up Emma from school. I decided it was time to visit a wig shop. I was planning to shop for a wig with a couple of girlfriends last week, but I cancelled because I was so tired. I wanted to make wig-shopping fun, like shopping for a new pair of shoes. I thought we would all try a few wigs on, put a few Cher style wigs on, take pictures and laugh about it all. It was actually good that my first experience with wigs was by myself.

I walked into the wig shop looking like a deer in the headlights. It looked like a regular hair salon except the walls were lined with shelf after shelf of wigs. I thought I would just walk to the shelf, put a wig on, see how it looked and then move on to the next wig -- self service style. Perhaps that is how it is done in other shops. In this shop, it is all about service.

When the woman (would she be called a stylist?) first saw me standing rather timidly in the middle of the store, she pulled me over to see the wig of another client who was still in the styling chair. This other woman’s wig looked very real. The client looked great and she seemed very happy. I was not sure why the lady in the styling chair needed a wig. Then this woman told me she lost her hair due to an illness (cancer?)

OK. Then it was my turn to sit in the styling chair. I wasn’t quite prepared for this. What happened to “just looking.” The stylist asked why I was shopping for a wig. “It wouldn’t be chemo would it?” she asked. “Oh yes,” I said, “It would be chemo.” I flashed her my port and she understood.

At this point the stylist turned into something between a counselor, bartender and girlfriend. She clearly has had lots of cancer patients sit in that chair, because she knew just what to say.

For the next 30 minutes of so, the stylist managed to make me laugh, to calm me, to educate me, and to sell me on a nice style in my color. When I put the wig on, I wanted to pull the hair back into a barrette like I do my own hair. This is when I learned my first lesson: the wig comes with a certain style. You can’t change the style. No scrunchies or barrettes in the wig. I told her I would be back with my mom and/or girlfriends for a second opinion.

This is hard, I think because getting upset over the loss of hair is so irrational. I mean my hair will grow back! Yet, hair is very personal. It is like a limb. In addition, the loss of hair is so public. While fatigue and nausea is not always associated with cancer, a scarf or hat over a bald head clearly signals cancer. Finally, I think I am upset because losing hair and getting a bald head is, frankly, a bit freakish. It is just not normal. Now every time I lie down, I check to see if I left my hair behind on the pillow.



Here is button I got from the doctor's office. My stylist friend had a button that was a little more blunt and crude that I cannot post.