Reading list

Have a brain tumor or other neurological disorder? Interested in how the brain works? Want to kick ass and defeat your disease? Check out some of the books on my reading list. (This list will be updated as I finish new books.)

• Stay Healthy, Live Longer, Spend Wisely, by Davis Liu, M.D. (added November 2009)
• Everything Changes: The Insider's Guide to Cancer in your 20s and 30s, by Kairol Rosenthal (added October 2009)
• The Body Has a Mind of Its Own, by Sandra Blakeslee and Matthew Blakeslee (added August 2009)
  
• Outliers: The Story of Success, by Malcolm Gladwell (added July 2009)
  
• My Stoke of Insight: A Brain Scientist's Personal Journey, by Jill Bolte Taylor, Ph.D. (added May 2009)
  
• Musicophilia: Tales of Music and the Brain, by Oliver Sacks (added April 2009)
  
• It's Not About the Bike: My Journey Back to Life, by Lance Armstrong (added April 2009)
  
• Love, Medicine & Miracles, by Bernie S. Siegel, M.D. (added February 2009)
  
• Crazy Sexy Cancer Tips, by Kris Carr (added February 2009)
  
• The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, by Norman Doidge, M.D. (added February 2009)
  

Acupuncture; all the cool kids are doing it

Let me just say, it was a little awkward taking photos of myself with 14 needles stuck in my body, but it didn't hurt one bit.

Ask the Girl with Brain Cancer #2

Q:

Dear Liz:
What populates the space that the growth used to be in?

-- G

A:

Spinal fluid.

-- Liz

How much and how often? My chemo dosage

Temodar. Oral chemo for peeps with brain cancer.

I talk about my treatment all the time in this blog and some of my readers have asked me what my chemo schedule/dosage is like. Just to be clear for those who aren't familiar with this drug, there are a few different ways it can be prescribed.

According to Temodar.com:

Different dosing schedules are used for taking Temodar. ... One schedule you may be prescribed is Temodar taken for 42 days (up to 49 days) with radiotherapy. Another schedule you may be prescribed is Temodar taken for 5 consecutive days only, then you must stop taking Temodar for the next 23 days. Your dose is based on your height and weight, and the number of treatment cycles will depend on how you respond to and tolerate this treatment. Your doctor may have prescribed a treatment regimen that is different...

I am on the 5 days on/23 days off dosing schedule. I will be doing this for 2 years, and will most likely be on it longer if my body continues to respond well to the treatment.

Since the amount of Temodar you take is based off of your height and weight it is a little different for everyone. When it is my chemo week I take 270mg a day.

Want to know how much Temodar you'd have to take (if you had brain cancer)? Check out the handy dosing calculator on the Temodar Web site.

Shoot--now we can all be neuro-oncologists.

Viva la Temodar.

I got nin-jured

Halloween at Brett's parent's house

(Liz is on the left, Brett is on the right)

I started my 9th month of Temodar (chemo) on Tuesday.

My work had a Halloween costume contest on Thursday and I wanted to win. I wore my ninja costume and when it came to judging time I did my best to show off and act ninja-like. This included me swinging a ninja sword, performing jump-kicks, and somersaulting into a fighting pose.

All was going well until the somersault, during which I dislocated my right shoulder when my hands hit the ground. If you've followed this blog for a while you may already know that I dislocate my right shoulder often and it is in need of surgery. The good news is that I am able to pop the shoulder back in myself. The bad news is that the musculoskeletal surgeon isn't willing to operating on me while I am in cancer treatment.

At least, he wasn't willing to do so back in May. But now it is November, I am doing well on chemo, my lab work looks good, and fuckin' a--I want a usable shoulder! What's the point of saving your life and being healthy if you can't go out and enjoy your life? I want to play tennis! I want to do push-ups! I want to work out my arms and look like Jillian Michaels!

Except for the part about Jill, I used to do all these things before my multiple shoulder dislocations.

My frustration isn't about cancer. It is about a stupid shoulder injury that can be fixed. And once it is fixed I can go back to my normal ninja-like activities. Even if I might be on chemo for the rest of life.

This shoulder immobilizer keeps me from looking ninja-cool

A poopin' good time

A great article about constipation: Keep it moving

Re: eosinophil count

Here's the response from my neuro-oncologist:

Your labs from 10/25/09 are fine, so you can start your next cycle of Temodar. I wouldn't worry about the eosinophil count being slightly elevated. That can be due to a variety of things, including allergies. We will keep an eye on it, but I don't think it needs to be treated.

-- Scott

And yes, he goes by first name. But I can't bring myself to calling him Scott. That just seems disrespectful.

Apple Hill

Brett and I went to Apple Hill today and it was awesome.

Going into my 9th month of Temodar (chemo)

I'm going into my 9th month of Temodar and my latest blood test shows I have more eosinophils (a type of white blood cell) than I should. This could mean I have a weakened immune system. I am actually surprised that it has taken this long to have an abnormal blood test.

I e-mailed my neuro-oncologist to ask what this means and will report back as soon as I have an answer.

I was just trying to chop an onion

Can you believe that this is how messed up my face gets while slicing an onion? I want things to go back to the way they were when Brett did all the cooking.

Thinking of you

Dear Kaiser:

The smell of your bathroom soap triggers memories of every hospitalized experience I've had in the past year.

One minute I'm checking out my hair, running my hands under the hot water wondering when my prescription will be refilled, and the next I'm standing half-naked in a hospital gown, head shaven with an IV in my arm.

Good times.

- Liz

Fear of seizures

I need to stop living like it's 2008 and I could have a seizure any time, any where. I am sick of the anxiety. I want to be normal again.