hair loss

Tidbits from December

From a journal entry in late December:

I washed my wig today. That was weird. Only two cups of cool water in a bowl with my wig cleaner. Jeepers... pulling it out of the bowl I had to convince myself that it was a useful prosthesis and not just a big old hairball! After a quick rinse and a gentle towel blotting, I gave it a little shake. The style bounced back immediately. It dries on the wig stand for 24 hours and will then be ready to go.

My best Christmas chemo fog moment: We had friends over on Christmas Eve, and they brought a rib roast. Cara had it in the oven at her house, and we were just going to finish it off here. So I turned the oven on and then when the oven came up to temperature, Cara asked me to put the roast in the oven. “Sure.” I replied. I finished what I was doing then set the timer for 30 minutes, knowing I would forget to watch the clock while the roast was in the oven. Twenty minutes later Cara said, “Is this the roast that’s supposed to be in the oven?” pointing at the roast sitting on the stovetop. “Yes, but I did remember to set the timer!!” (My sister-in-law did this yesterday with a frozen pizza… and she’s not on chemo! Perhaps it’s busy-mom fog.)

Having donned my wig one morning, I knelt down to wash Cocoa Krispies from Will’s lips. “Mom, does it hurt when you take your wig off?” “No, watch…” and I took it off. Then he wanted to try, so I put it back on and he took it off. Then it landed on his head for a quick laugh. As I replaced it on my head, I reminded him, “Never take it off in public, outside of our house.” With that grin, he summed up the lesson. “So Mom, never pull off a bald woman’s hair!” On his way to becoming a true gentlemen.

We had a big gift in our house for Christmas: the Wii. The day after Christmas we set up each of our Wii characters with physical attributes. Bill, Will and Liam were first. Then it was my turn. My heart skipped a beat: What will my character look like? What will the boys want her to look like? We selected female and numerous hair options appeared – including bald! Kudos to Wii designers. We all had a laugh over my little character, especially when I was boxing. Completely bald, she has big eyes and red lips. She looks like her wig fell off getting into the boxing ring.

Staying strong,

Linda

“My Hair Will Fall Out”

Back in September these were five words that I had to say to Will and Liam. Finding the time, determining the place, developing the set-up, anticipating their response, and forcing myself to just do it – these things were more stressful than any other moment since the day the radiologist gave me that undeniable “you have cancer” look.

I had already been through the “I have a little tumor of breast cancer and the surgeon is going to take it out.” Both understood my sore side and smothered me with gentle kisses (plus one strong kick), asked how I was feeling, and helped me get better with homemade cards. I recovered quickly from all three surgeries. Perhaps not completely back to my normal “farm muscle” self, but enough to take my sons to school, to pick them up every day, and to take care of them after school.

But now to deal with this next stage. There are scads of books on how to talk to children about cancer and chemo. I read through a few of them, none seemed just right. One started with two little girls in tears because their mother had cancer. Another described chemo as a shark eating the cancer cells and attacking some good cells along the way. Its downfall: the illustrations. The bald mother was bright green like an alien. I had no intent to be bald AND green.

I referred back to Cancer 101 that Bill and I had in our local pub after I was diagnosed. We were going to live in the moment. Some moments we would have to deal with cancer, other moments were ours to live as we chose. Cancer could not be a cloud lurking above all of our moments. From all the side effects that could possibly happen, I chose to talk specifically about what would be most noticeable to the boys.

Losing sleep over this imminent conversation, I had to just do it and be done with it. One day after school, I took a bag of hats to the living room and sat down with the boys, and I started my speech. “Remember the surgeries I had to take the cancer out? In a few weeks I’m going to take some strong medicine called chemo to make sure ALL the cancer is gone. And guess what, it’s going to make my hair fall out.” Will’s eyes grew to the size of the silver dollars his grandpa gave him for Christmas. “BUT, when I’m done with the medicine my hair will grow back.” His eyes normalized. “I have a bag of hats here and I’m going to put one on and tuck all of my hair in so you will see how funny I’ll look with no hair.” I put a hat on then let them each choose one to wear. The three of us went to work tucking my hair into a beanie cap. Liam got a big kick out of it, laughing with every lock he pushed under the hat. When the job was done, I said, “There, see how funny I look?” Will, our resident Michael Phelps fan, immediately said, “You don’t look funny. You look like a swimmer.” I grinned. Then I told them that I might wear a wig some times. I asked if they knew what that was. Will wasn’t sure. “It’s fake hair,” I explained. “Mom, I’m going to make a wig for you out of Legos!” That sounded painful, but I knew I would have to wear it if it ever came to be.

Switching gears away from hair, I went onto the second most likely thing that would happen. “There are days when I’ll be tired. I won’t have a lot of energy, so I will do something that you don’t like to do in the middle of the day, Will.” Will’s eyes grew again, “NAP?” “Yes, Will, I’ll take a nap.” He couldn’t believe anyone over three would actually want to do that.

From there I simply asked, “Do you have any questions?” Will did. “Can we go play now?” That was it. Our first talk about chemo was done. Will and I talked more in the days following. I pointedly asked on occasion if he had any questions about chemo. And for the first couple weeks he did, or he just wanted the same information repeated, especially when we talked about my white blood cells. From the Magic School Bus, he knows a little bit about white blood cells. He understands why I’m a drill sergeant when it comes to Purelling and washing hands.

Liam on the other hand doesn’t use or completely understand the word chemo, but I feel comfortable telling him “I’m going for chemo today” because we had our chat. Cancer and chemo are not taboo words in our house. Liam focuses on and understands more of what he sees: my scars. He checks them and then asks me, “Are they still owies, Mom?” Not any more.

We never did read about the green mom because fortunately I never turned green. We never read about the two girls crying because the boys haven’t cried over cancer. Keeping cancer where it should be, in its moment, has helped all of us deal with the cancer, the chemo, and my swimmer’s head.

Staying strong,

Linda

Impersonations

Generally a stickler for calm, quiet, bedtime routines, lately I have wound up in Liam or Will’s bed breaking my own rule. One night, after reading books together in bed, Liam looked at me and whispered, “Mom, do big eyes!” So I opened my eyes as wide as I could. And his big chortle set off my giggles. When he caught his breath, “Again, Mom!” And I did. His belly laughs always remind me of my dad when he’s watching Laurel and Hardy or The Three Stooges. He turned to me a third time and I did big eyes without him asking. I can only describe this vision as a white egg with big eyes. Under his blanket we were little more than a gelatinous mound of laugh muscles.

Will’s favorite is my puffer fish. This is big eyes, plus puffed out cheeks. With my bald but spiky head, it’s pretty much a dead-on likeness. I puff up and as I’m about to turn blue, Will deflates me by pushing the air out of my cheeks. Leaving once again a heap of giggles, as he rubs my spiky head.

For bedtime my current hat of choice is light-weight and bright red. It’s extra big so there’s a puff at the back of my head. I often put it on upstairs before getting into bed, just to take the chill off. One night while I was sitting red-capped on the edge of the tub, brushing Will’s teeth on my normal perch, Bill walked in, grinned and said, “Do you know who you look like?” I knew where he was going. “Yes…. Noddy without the bell.” Laughing, he replied with a big, “YES!” He knows Noddy is my least favorite Sprout star. And there I sat, a replica of that icon.

One morning, running around with only a beach towel loosely draped over one shoulder, I caught a glimpse of myself in the bathroom mirror. I went into the kitchen and asked, “Who am I now?” I was going for Tibetan monk but Bill elevated me to a higher status. “Ghandi.”

Last Saturday morning when Liam and I were making blueberry muffins, Bill started filming the event. Lovely, I’m in my pajamas (matching!) and bra-less, previously wondering whether I wanted my bald era documented in moving pictures. I guess, yes. Bill chuckled as we worked, “Look out Barefoot Contessa, we have Bareheaded Contessa!” Then Will chimed in, “But Dad, Mom is barefoot too… She is the Barefoot and Bareheaded Contessa!!”

After bath time yesterday morning, I threw a bright blue beach towel over Will as he was crouched on another towel on the floor. They usually do snail impersonations after baths, but after reading a frog book the night before, I told Will he looked like a poisonous blue dart frog. As I turned and walked back into the kitchen, I heard a little voice, “OK , Spike! … Ya big porcupine!” He cracked me up. As I grappled with the name-calling, thinking it’s not the behavior normally accepted in this place, I resolved it with the thought that it’s not normal to have a bald mom! And we would just go with the humorous flow.

In September during a giggling episode in bed with Bill on the night of my radioactive PET scan day, I said to Bill, “Do you think being bald will be as funny as being radioactive? He closed the show with a one-liner, “Who loves you, baby?”

While I worked so hard pre-chemo to build my camouflage shtick, little did I know how much fresh material we would have mid-chemo when I took off my designer glasses.

Staying strong and laughing daily,

Linda

The Wig and the Real Hair

I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!

My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.

A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.

I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”

A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)

If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.

I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.

Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.

Staying strong and not quite hairless,
Linda