Thursday, December 31, 2009

End of the Year Gratitude

Okay, Day 1 for me, 42 for the rest of you doing this 42 days of Gratitude thing. :)

I am grateful for learning to open myself and be vunerable.
I am grateful for learning to be a recipient of aid, help, and healing energy.
I am grateful I am receptive to love and healing that others give.
I am grateful for learning to trust the universe is indeed my coconspirator of my highest good.
I am grateful for the healing that has happened within my family this year.
I am grateful for the healing that has happened within my body this year.
I am grateful for all the healers who have done this with energy, with medicine, with muscle power, with love.
I am grateful for the mountains that bank me, and the choir which peeled back a layer that obscured my inner vision, and opened me up to a whole new world.
I am grateful for tears, and for long distance phonecalls.
I am grateful we all have a chance here to Love.


Tuesday, December 15, 2009

More on Herceptin Resistence and tyrkerb

Here is the news report:


Quick Post - Herceptin Resistence and it's CURE?

What is Herceptin Resistence? Herceptin is NOT a chemo drug. It doesn't kill all cells. Just breast cancer cells that have a certain receptor that helps it to reproduce. Herceptin goes in and takes the place where the protein should go to let the cell reproduce. Thus, shutting down the cycle. Like birth control for breast cancer cells with this as a positive attribute.

Now, this drug has been called the homerun drug of all chemo drugs by my oncologist. At the beginning of this journey. anyone in the oncology world I told I could take herceptin all were SOOO excited. The phramacist joked that it was so amazing it should be put in the water. HOWEVER, for 20% of the patients, it doesn't work. It is called Herceptin Resistence. For me, it seems to work better with chemo being taken with it. But on it's own, it wasn't holding it in check.

This has had me bummed, depressed, scared.....a life on constant chemo. I won't go there. Because...

I am part of a board of Metastatic Cancer Babes on Crazy Sexy Cancer. The discussion there informed me of a new drug in trials that helps overcome Herceptin resistence. Which lead me to a discussion with my doc several times. Which lead her to looking into it more. Which lead her to a conference. Which lead her being as excited as I am because she has the science behind it. Apparently, there is great hope and success with mixing an older drug which is similar with Hercptin and this overcoming the resistence.

Which lead her to GIVING ME THE DRUG!!!!!!! I am a road tester. Paving the way for this new drug combo that could save lives. SOOOOOOOOOOOOOOOOOOO EXCITED. I start TODAY. PRAYERS THIS WORKS. It could take me from 1-2 years to ????? !!!!!!!!!!!!!!!!!!! Prayers prayers prayers.

I NEEDED THIS. Hope, something to look towards. Somethign to be a part of that will help other women, even if it doesn't help me. If my dot on a graph somewhere helps scienctist understand it better which leads to a cure.....I AM IN.


Wednesday, December 9, 2009

And Sarah did the honors and I have the pics to prove it

What is it about kissing a bald head? lol!

Right back at you!
Very grateful. Not everyone can do what she did for me.


Breast Cancer, Chemo, and Losing your Hair Not your Head

How to lose your hair, not your head......

I thought I would post my journey from head of hair to baldy Rebel Girl, because, frankly, I don't think I can handle the ackwardness of people seeing me out of the blue, with a wig, or a scarf or hat and having that "Oh crap, what do I do, where do I look, do I say anything?" moments. So, I am posting the journey here. So you can, in your own time, process the change. And when you see, know the etiquette of staring, touching, questioning, and all that goes with dramatic visual changes.

My gift to you.

What can you say?
Whatever is on your mind, "Holy shit! You cut your hair off!' (because if it weren't 20 degrees out, I would go bald. I love it bald. I feel awkward in a wig, and sick in a scarf. But bald feels freeing and natural, no hiding.)

Say, "Wow, that is so weird, and hard to get used to."

Say, "You look different, but beautiful."

Say the truth. Ask direct questions. I don't mind. What I do feel awkward about it is the NOT acknowledging the elephant in the room. I like the direct approach.

And yes, you can touch it. It is still stubbly, and feels a bit like a sharks skin. But it was VERY irritating because hairs were falling out even with it shaved with an electric razor using no blade. When I put on wigs or scarves, the hair acted as a sandpaper, and got Velcroed to the hat or wig and was painful. So off it all went. I had splotches anyway, no Sinead OConner look. Bummer, I liked it that way.

But please, do not do ANY of this around Kara. She is so upset. I haven't seen her this upset about any of the journey. She has been upset before, but not like this. She asked us to stop talking about it in front of her, but she promised to talk about it to her therapist. So we agreed, no more baldy talk, for now.

So, here is the footage. I really dislike I had to do this NOW. When I see other people footage, they are healthy. At the beginning of their journey. As you can see. Cancer Rebel Girl over the summer, I am not on steroids to control the chemo nausea, not on bloated, not pimple faced, not exhausted with dark circles under my eyes from weeks of being sick PLUS chemo, OH and moving in a week.

BUT, none the less. The other people seem awkward with it. And sad, but trying to stay strong. I LOVED it. It was freeing and and load off. I guess a year and half of treatment, I know this is the least of my worries and concerns. It really really felt freeing. I feel MORE beautiful bald, than I did with that mop of hair falling out allllll over the place.

So, here it is...the video.

Sarah Cannon did the honors. She rocked rocked rocked. Jim was my support. While he couldn't bring himself to cut it, he did the memorial video and photos and was an all around moral support.

Kara snuck in and out. And tomorrow, we will go with Jeri up into the mountains we know live at the base of, and find snow and bury the hair there with notes of hope and healing that will melt with the snow in the spring and summer and give the birdies the nesting they need at the right time. I love it.

Sarah Cannon....I can't thank you enough. She has pictures of her and I together I hope to get very soon to post here as well. She was the first to kiss my bald head. :) Jim got the second. Kara finally got the courage to touch it and I agree with her assesment, it feels weird.

Cancer Rebel Girl got a new chance to unleash. And yes, if you are right with yourself inside, bald makes you feel empowered and sexy as all get out. SOMETHING comes unleashed when you go mohawk, and even bigger power comes unleashed when you go bald, and feel even more beautiful and powerful than before. ROCK ON! Maybe it is the artist in me exploring boundries, and social mores about sexual roles. I have had long long long, short short short and eveything in between. I don't mind experimenting. I thought my hair before made me feel pretty, and safe. Now I know my power is NOT in my hair. I may always keep it cropped after this, or grow it long as I can if chemo ever stops and lets it grow back.

Oh, and I plan to play while I can. Lots of wigs and lots of different styles. What better times to play with color and style than now? I have one wig right now. I feel more uncomfortable in that, than I do bald. Strange.

I feel the storm settling, the rain is passing, the sun is starting to show through the clouds after a very very very very long thunderstorm. But the air is clearing, and healing and peaceful times are afoot. I feel it.

If I can get through all of this year, and come back to hope and peace, I can get through anything. We are SO much stronger than we know. So much healing on so many levels has taken place. In me, in the circle of people around me, in family, in friends. I love this place. I love learning my courage, my vulnerability, my ability to overcome, other peoples ability to overcome and face the most challenging parts of their lives (thank you Jim!) and seeing just how wide are light can expand, even when we feel very very very dim.

Unfotunately, the video is not functioning properly. The sync between video and audio drifts out. So for now, pictures will have to do.

Saturday, December 5, 2009

The Beetlejuice Effect

So, first time round, I didn't lose my hair. Second time round, didn't lose my hair. This time round I am shedding like Chewbacca taking holiday in the Sahara......meaning....if you breath on my head, hair will fall.

It is itchy and irritating and I am trying to figure out what to do...because it may just THIN.

My dear daughter is stressed by this. The whole time, the threat of losing my hair has been her only point of expression on my cancer treatments. She doesn't want me to cut it. But after watching it fall out all day, she told me I could cut it, but (and she said this in a sweet, scared child way, not bossy) "Just don't do it if front of me". Oh that child. Tonight, she found scissors and cut a lock of her hair off and put it in her scrapbook.

But I am scouring the internet. Is this just rapid thinning that will stop? Or should I go for the close cut? Problem is, if you touch it, if falls out. So I don't see how a hair stylist could possibly cut hair that would constantly be changing as he/she cuts it. What to do what to do.

I am trying to wait it out. But for instance, I was making breakfast for Kara and I. And the whole time hair is falling falling falling. Right into our food. Hmmm..........

I have heard that Abraxane causes "hair thinning" but the posts I have read they say, "Yeah, thinning so bad I look like Beetlejuice". hmmmmmm.....

What to do, what to do........

so if next time you see me, I am wearing a wig, dawning a wrap, shaved my head to a stubble, or look like I could be Beetlejuice's hot date....please don't stare and just tell me I look beautiful .....Or I will shrink you and put you into a model of your hometown.


Thursday, December 3, 2009

Endurance Take Two

Okay, here is the long and short of it.

My living situation got turned on it's head out of the blue.

Move to Issaquah being bumped WAY up. I found out less than two weeks ago my living situation was changing. I am leaving this weekend. WOW. Trying to take it all in.

BUT I LOVE the fact I am moving into our OWN apartment, that won't go away and I can just relax and the base of the Cascades, on a mountain, and still get to Seattle in 20 minutes. And this place is MY OWN.

I am moving very very quickly, because I really really need to be in a place I can rest. I just finished unpacking and was looking forward to settling down and resting finally. So I am moving fast, so I can get to that settled in place to heal and rest in a small town at the bast of the Cascades.

And also, because I start radiation next Monday.

Oh, and my hair....falling out in clumps and constantly. It is annoying, like a shedding cat constantly on my head. But Bug doesn't like it and wants me to keep it. But i want to cut it short while it falls out so I don't get this tangle mess of hair in my face all the time. When I take my pony tail out, I take a clump of hair. It has to go soon.

And singing. I want to get back to it. I missed choir this month. Can't wait to sing again.

Life is moving fast. I am panicked, yet feel this might be the final push to get to a place I can really rest and heal in. It is good for my family and therefore good for me. And it is good for me. I love the mountain ridges looming overhead and river running through two of them, revealing Rainer on the other side. Ahhhhh. I love the woods.

who is freaked out she has to pack in one weekend and move!