The Cap

By Lorri  Steer

blogger at Terrible and Beautiful (currently private)

I never liked hats before cancer. Somehow like Elaine on Seinfeld, I thought I had an unusually large head and hats wouldn’t fit me so I never fancied the thought of wearing one. Cancer changed that of course. Hats became the banal bread and butter of my existence for a while anyway. I had sun hats and hand knit hats and scarves of course. But there was one type of cap that had the potential to make me look like a really cool Soccer Mom – the feminine baseball cap.

You know what I’m talking about – not one of those authentic, synthetic baseball hats with a logo on the front and a plastic mesh back that you’d see on an old retired trucker. Not those. The hat I coveted was more of a cap – a softer canvas crown with the front bill curved just so to cast a flattering shadow on one’s un-makeup-ed face. The caps that make the women in line at King Sooper look like as soon as they drop off those orange slices for the team they will run their training route for the next local marathon. Those caps looked divine to me but it wasn’t the cap so much as the thick, lustrous ponytail pulled through the back opening. Those bouncy tails looked so sassy and fresh. Perhaps it was the air of youth or femininity but without its addition, the cap was more of hat than a crown.

I wore the caps after treatment even without the pony. It was a necessary transition as my hair came back. A bejeweled pink cap covered my ultra-short hair like a billboard advertising, “Just breast cancer folks. Nothing to fear.” It kept me from a sunburn that first summer and made me look healthier than a cancer turban or telltale ACS hat. But it still lacked the bouncy hair bound tightly with elastic. After a while, I gave most all my head coverings away except several favorites tucked high on my closet shelf. Time passed.

Months turned to years and hair came back. Ponytails – albeit more like pig tails really – returned. I forgot about the baseball cap and went about my life until this morning when unruly locks needed confinement. With negative 3 minutes left on the get the girls to school clock the mess of hair was combed up and secured. I raced into the closet to grab some shoes. A hurried glance in the mirror told me that I’d done better hairstyles in my life but time trumped vanity and I inwardly sighed, “Oh well.”

I spied it on my way out – the beige cotton cap from Disney World. Vintage Mickey seems to say in his squeaky Mickey voice, “Try me!” Tentatively I reached for the cap wondering if it might work – would the ponytail be long enough to pull through? Could I look more like a cool Soccer Mom than a Post Cancer Mom? Would the cap cause nauseous flashbacks like the theme song to “Let Us Sleep On It” on HGTV,the thought of the Spicy Pickle restaurant, or the smell of watermelon Soft Soap at the cancer center? Truthfully, there was no time to wonder – something had to be done and had to be done 3 minutes ago.

One hand grabbed the ponytail and one hand lifted the cap by the bill. With the quick flick of my wrist, the ponytail went through the back opening and the cap came down over my forehead. It worked. I ran down the stairs – late but smiling – with my ponytail prancing behind me. I think this either means it’s time to start training for a marathon or time to get a haircut.

First Cycle: Xeloda & Tykerb (Medical Update)

(cross posted from Coffee and Chemo
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The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

Please pray (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Haircut

(cross posted and edited from Coffee and Chemo)

 

I was hoping that I would be lucky this time too.

Despite a few days of hair loss, most of my hair remained on my head during the past year or so of chemo. So, when my hair started falling out this time, I hoped that it would stop after a few days. (Never mind that my doctor said it would probably not fall out last time and that it probably would fall out this time — feelings are not rational)

It has already been two weeks, and every day I comb out more hair.

A few days ago, I posted here about losing my hair. Mary Beth Volpini, commented on the post:

I read a great saying a long time ago …
”If you don’t know what to do…don’t until you do.”

The simple truth of those words touched my inner soul.

I was not yet ready to say good-bye to my hair.

I was torn. Though I was not yet ready to “cut it all off,” I wanted to save part of my hair. I wanted to save my braid, which was getting thinner and thinner every day. I did not want to wait too long.

The other night, I watched several YouTube videos of women with cancer who shaved their heads.

Several mothers chose to involve their children in the shaving/cutting. I thought this was a great idea. When I first suggested it to my girls, they were appalled by the idea. I let it go. Not every good idea is good for every family.

Today, after swimming, I had to ask a friend to help remove all the hairs that fell off and stuck to my back. That was it. When she asked me “why don’t you cut it short?” I realized the time had come.

On our way home, I mentioned to A, who was the only child with me, that I wanted to cut off my braid tonight. We talked a bit about our feelings.

“It makes me sad,” A said sweetly, “I like your hair.”

“Me too,” I admitted.

We were quiet for a few moments. Then I asked her, “Would you like to help me cut it off?” Without hesitating, she answered “yes.”

When I got home, I told Y that I was going to cut off my braid and that A was going to help cut it. Then I asked her if she wanted to help cut it off too. To my surprise, she also answered yes right away.

I then asked MD, who answered just as quickly “I am not part of this.” We all laughed.

I told Moshe, who asked, surprised, “You want to do this now?”

I was hurrying to get ready for a simcha (celebration), but the timing was right.

“I want to do this now,” I answered, definitively.

I got our our barber shears and gave them to Y, who began cutting off my braid. Then, she passed them on to her sister. While A was cutting, Y came around to give me a hug. I felt surrounded by love and caring.

It took less than five minutes. I combed my fingers through what was left of my hair.

“It looks cute,” Y said. Then she noticed that the ends were not even. She took the shears, studied my face, and evened out the ends. “There,” she stated when she was finished. “You should put in some clips to hold the hair out of your face,” she added, and ran to get some for me.

And then it was done. I went to get dressed for the simcha.

“Nice haircut,” said one of my friends, later in the evening, noticing the short ends sticking out from under my scarf.

I smiled, and she realized why I cut it.

“Still,” she said, acknowledging the loss, “it looks good on you.”

Hair Today, Gone Tomorrow

(cross posted from Coffee and Chemo)

A week ago, after swimming, I sat in the locker room combing out my hair…. literally.

 

As I combed, more and more hair came out in the comb.

 

It took me a few minutes to realize what was happening.

 

A few weeks ago, I commented to my oncologist that my hair did not seem to be falling out and, perhaps, I would not lose my hair this time either.

 

“Don’t count on it,” he responded, matter-of-factly.

 

I still have not figured out what I want to do.

 

I am reluctant to just “shave it all off,” since I have met women who did not lose their hair with Taxol.

 

Some women just lose the hair on their heads; others keep the hair on their heads but lose their eyebrows and eyelashes; other women lose both; some women lose ALL their hair (including the hairs on their arms and legs). 

 

I had always thought that I would be one of those bold women who just shave everything off.  You know, the “get them, before they get you” approach.

 

If I knew for certain that I would lose it all, then that is what I would do.  But I don’t.

 

So I am waiting is out.  Holding on to what is left.  And wondering, if it all falls out, will I ever have red hair again….