Monthly Archives: May 2007

Crowning glory

Many thanks to PdxLeeAnne from the breastcancer.org discussion boards for the video to the Crowning Glory hair-raising drive for Burning Man 2007. My naturopath had mentioned this on Friday, asking me to donate locks of my hair. Heck, donate?! Of course, but now I want to go! If you go to Burning Man, please take video for me.

The main message: “Remember, you are not your hair.” Yep, I get that, having spent the last week bald. And bold. And you know what else? Feeling really confident and beautiful. Somehow I suspect that my hair before didn’t do me justice. I can’t pin it down exactly because I loved my hair, but somehow this is better; at least for now, it feels really, really good.

And the message at the end:

donate, collaborate,

immolate,

and then regenerate.

Wow. Those last two lines are the essence of the experience – first to literally destroy the cancer cells with the immolating power of chemo, to throw myself into that fire, and then to regrow the good cells destroyed along with it, to re-form or “create anew” my quality of life and my survival itself. What a great vision, to regenerate. I think I like the last definition (see link above) the most: “Restored to a better state; refreshed or renewed.”

BTW, I found a mandala painter to henna my head when it stops hurting. Check out the designs at the end of the video, the bejeweled head… 🙂 Might as well, right?

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The scarlet scarf

During this round of chemo feeling better started at day 8. That’s when I started doing normal things like going to the grocery store. Of course, this time I have no hair. Scarves and buffs are my headgear of choice these days, and they’re pretty darned comfortable. In fact, so comfortable that I sometimes forget about not having hair because I do in fact have something on my head.

However, my scarf-clad head seems to be the scarlet letter equivalent of having “cancer” emblazoned across my forehead. Twice now I’ve had the odd experience of having heaps of extra attention lavished upon me at the grocery store. Hey, I’ll take it, but both times it took me a while to figure out why staff were being overly helpful.

Maybe it’s because I love going to the grocery store that I forget about my lack of hair. Shopping for food is a zen experience of being utterly absorbed in the color of fruit, the smell of fresh bread, etc. And these days because food in the chemoverse tastes different, it’s as if every food is new, so there are just a lot of choices to make. It’s very successfully distracting.

By the time I go to check out, or deal with staff making a beeline to help me, I’ve totally forgotten about my appearance. Since the level of customer service has risen so much, I’m pretty stunned by the service, and then I remember: Yep, now it’s clear to the world that I’m going through chemo.

So I’m happy to report that being bald has its advantages. Now, if only all the stubble would finally come out!

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Caring

One of the blogs I read these days is the NPR Cancer Blog. Today’s post: Caring Can Be the Toughest Part.

Ahh….the worrying that goes on around me. It’s almost too much for me some days, but it’s natural, normal, and in reality can’t be any other way. It is what it is…and I worry about me too. These days it’s all I can do to get through each day: drinking my 2 liters of liquids, eating 3 – 5 times, going for a walk, doing some work to keep my job and health insurance. Making sure the house is semi-clean. Making it to my doctors appts on time. (In the past week, for the first time in my life, I’ve been late almost every time. Moving fast is just not in the vocabulary these days.) It’s all about the basics.

Returning phone calls and emails have for the most part gone to the wind. I can only do one thing at a time these days, so multitasking has gone out the window. So, if you want to talk to me, please try and try again, because I can’t keep up. And even when you do get a hold of me, if I’m actually eating, I prioiritize that. And so on….I just can’t do it all. And the thank you cards…..the backlog is about 40 cards long, I just can’t do it. Know that I love you and consider yourself thanked.

So, what are the benchmarks for a decent day? Being able to be out and about in the world a little, and not inpatient. That’s a huge one, one we’ve taken for granted so far. Let’s love it while we’ve got it. Hmmm…what else? Not throwing up. Having moments, at least a few a day, where I forget about the ickiness that is chemo. Having a little bit of joy. A little bit of distraction into the normal world.

And know that every day my very cells scream the wrongness of chemo, and so it’s pure willpower that keeps me in treatment, that, and a vision of a full head of white hair when I’m 80. I’m going to be a great 80 year old. 🙂 But in the meantime, it’s icky and hard.

So that’s why presents like Courtney’s lift the spirits SO much! She sent me a handbag of with pictures of women with cowboy hats in the wild wild west: “To carry all your various belongings/snacks/cdsto and from the doctor/yoga/etc. These ladies are so spunky and YOU ARE. You’re a swashbuckler, meeting cancer in a saloon and taking it down with a quick draw.” What a great image – except that taking it down while IN my body is not exactly ideal. Anyways, thanks Courtney!!

The light at the end of the tunnel is that this is finite – this is A/C treatment #2 of 4, so half way done. Then on to the taxol chemo, but that could be a different story all together. We hope!

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Life in the chemoverse

….is pretty darn slow. Today is day 6 of round #2 – as the nurse said today when I called, I’m almost 1/2 way through with the A/C. Still feel like crap, but actually went to work today, thanks to the miracle of acupuncture. So, things are looking up. Plus it’s gorgeous outside. Can’t wait for days 10 -14 when I actually feel slightly normal. Day 6 is when my tolerance for sweet things starts to come back, so I can actually drink juice, recharge etc. So, a good day.

And many thanks to my cousin for shaving my head – it hurts a lot less. Prickly, but the sports buff that Jen got me hugs my head gently, so that works. And boy has the customer service picked up everywhere I go, as if I have the word “cancer” written across my forehead. I’ll take it – I need all the help I can get. 🙂

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Grand follicular exodus :)

It’s begun! Running my hand through my short, short hair and it comes out….YIKES. Off to shower in a bit once Mariana is awake and can come over for coffee and support. This is Day 4 of chemo #2, pretty shaky but taking things an hour at a time. My hair hurts, which is why I’m up this early.

Many thanks in this past week to Lizzy and Mariana for taking me to appts, and to Karen, Jan and my uncle for food, and to all for TLC. And a special thanks to Hallie for 2 more excellent CDs, and to Jan for Balkan music as well.

Quick update on team care:

#3 May 31 – June 2 – Mariana on Thursday; Kim, Jeannie? on Friday

#4 June 14 – 16 – Alicia

#5 June 28 – 30 – Heidi

#6 July 5 – 7 – Mary

#7 July 19 – 21 – Jen

#8 Aug 2 – 4 – possibly Vicki

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“Ancient wisdom”

Sleep when tired.

Eat when hungry.

Drink when thirsty.

Get outside.

Sounds easy, right? I wish the basics were easy for me, but no. I think I need a kid around, because when Katie & Jackson are around, we do all those things, otherwise we all suffer from cranky children. As an adult, I just tough it out and ignore the basics to do what I have to do (work, adult responsibilities, etc. etc.). Maybe it’s a typical Americanism, I don’t know, and maybe, hopefully my friends with roots in the rest of the world are going to read this quizzically because self-care is built into their culture. Here, not so much.

Hence my strategy so far has been to pretend: if I were the kid, when would I eat and sleep? If you have other strategies, advice needed. Self-care’s a hard one all around.

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Rites of passage

It was the hair falling out into my breakfast cereal that did it. I wasn’t sure at all about cutting off all of my hair, cutting it shorter than many boys, but then I was eating breakfast and all of a sudden there was hair in my food. And it was my hair. Aaargh. Super-annoying to say the least.

I know it’s hard to wrap your head around the image of me with hair that is so short – 1/2″ long, but try this: imagine my head as if I were becoming a Buddhist monk, disavowing vanity, embracing a simple aesthetic in order to focus on a sacred life. Or, alternately, imagine me as a soldier just starting out, my individuality stripped, the groundwork laid for the process of transformation that allows one to fight.

I think my favorite image is from a friend who as a young 20-yr old cut her hair super short as part of the process of coming out. She said the surprising effect was that it opened the top of her head, her crown shakra to the energy from the sky. I think maybe that’s the most positive image: imagine my crown chakra now more connected than ever before to the sky, imagine all that sky life-force energy pouring in. And pulling me up.

So sky-energy and a sacred fight, literally for my life. It’s this part of the treatment, much more than surgery, that feels like a real fight – this is where the term “survivor” comes from, because this part, this is all about surviving. Just having the right to breathe. There was a point last week when I felt like I was dying, like the cells inside me were dying, which was very, very scary. I don’t know that I’ve ever felt that bad before. I wanted to stop chemo, but that felt like choosing not to survive, which felt just as bad as choosing to continue, except that we know that choosing not to finish chemo is in the worse choice. So I’ll continue, and maybe this next round of chemo won’t be so bad.*

But now I have the sky-energy on my side, so that’s got to help, right? Also, somehow it feels right to be physically transformed in such a visible way – like having a broken arm and having a cast on it. This says to the world: hey, there’s something going on here. Which is true.

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* NB: So hey, don’t go getting all sad – just FYI, my prognosis is very, very good. I am NOT dying. Got it? Ok, so don’t go getting melodramatic on me. Just stop that thought track right now. I have such a good prognosis that I don’t talk about it much because in the universe of breast cancer there are so many who are so much worse off that it seems in bad form to talk about my prognosis. So I don’t. Just so you know. If anything is dying, it’s those damn cancer cells.

And my hair. And my gut lining. The latter two are however temporary and fixable. The long-term view here is the one that works. Imagine me being 80, with beautiful white hair.

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