Brain Tumor Thursday
I have volunteered to write about brain tumor patients and survivors to raise awareness on my blog on Thursdays. There is an ongoing awareness campaign over on Twitter called “#BrainTumorThursday.” It happens every Thursday on Twitter. Just put in the hash tag #braintumorthursday or #BTSM (brain tumor social media)
. There is great information, support, and community for the brain tumor community. Did you know that Kathy Wakile
from The Real Housewives of New Jersey
is very active in the brain tumor community, as her daughter, Victoria, had a brain tumor. You can follow her on Twitter @KathyWakile
It is my pleasure to introduce you to Liz and her army of inspiration.
I hope I continue to put things in perspective.
I used to be a workaholic, and I’m still an “achieve-aholic,” but after my first seizure and then a brain tumor diagnosis, it was hard for me to slow down, focus on my health and heal. I actually felt ashamed that I lost my job and was on disability. I was embarrassed that I lost my health insurance and that my friends had to put together fundraisers to cover my medical bills. (I now realize that my friends were glad to have a way to help me.)
When my tumor grew back and I had a second brain surgery something in my brain clicked (pun intended). I thought, “Holy sh-t. This is for REAL.” I knew that my job did not define me. What did define me was my strength of character and how I took care of myself. And I needed that outlook after my second surgery. I had to relearn how to walk and balance. I had to deal with seizure maintenance. And I was put on a chemotherapy pill called Temodar for 24 months.
Now that I’ve been off Temodar for nearly a year, I sometimes get caught up in my work/busy life. Keeping in communication with other brain tumor patients and cancer survivors keeps me grounded and reminds me of what is important.
My husband embodies the term “unconditional love.”
I wish I could take my husband to Disneyland and a baseball game all in one day. OMG, he would explode with happiness. (Technically, this is possible–but he hates the Anaheim Angels. They’d have to be playing against the Oakland Athletics.)
Brain tumors are hard on the caregiver, and my husband was only my boyfriend of a year and a half when I was diagnosed. Instead of running away, he jumped in and took care of everything. We didn’t even live together at the time… I had to tell him what all my Internet passwords were so he could log into my accounts and make sure all my bills were paid. He made my food, and drove me to all my appointments. I couldn’t drive for 11 months. He did everything.
My husband embodies the term “unconditional love.” I am so grateful for him, and it means a lot to me when I can do something amazing for him.
I dream about…
I dream about Logan sometimes. (I included a photo of Logan.)
Liz's friend, Logan
Logan is a friend of mine who was diagnosed with brain cancer, and died two years before my diagnosis.
Before Logan, I didn’t know anyone with brain cancer. I didn’t know anyone in their 20s could even get cancer! And brain cancer sounded so horrible, the worst of the worst. Logan was alive for three years after his diagnosis. He had a medulloblastoma.
After my diagnosis, I thought about Logan so much that I started dreaming about him. One night, in the months between by first and second brain surgery, I dreamt that Logan told me that I wasn’t going to die (from brain cancer). Something about that dream was pretty powerful to me. It is always nice to think that the people you’ve lost are looking out for you from the other side. (I wrote about that dream on my blog
I am (be)…
I am passionate about using my “nerd skills” to tell stories of change and inspire engagement among the brain tumor community.
Brain tumor diagnoses and treatment
(I included a photo of me and my MRI.)
Craniotomy 1: September 2008
Diagnosis: Grade 2 Astrocytoma with gemistocytic properties (borderline grade 3)
Craniotomy 2: February 2009
Damage to left parietal lobe after second craniotomy, right-sided sensory changes
Treatment: Temodar chemotherapy for 24 months
Parietal lobe epilepsy
”First save your life. Then worry about everything else.” – Dr. P., my neurologist (I included a photo of me with my neurologist).
Three things you’d like to share…
1. I’m ambidextrious.
2. I dislocated my shoulder seven times in 2009 and had to stop chemo for six weeks to have a surgery.
3. As of this year, I am serving on the medical advisory board for the National Brain Tumor Society. In May, I am going to Washington, D.C. to lobby our elected leaders about the importance of brain tumor research.
If you would like to contact Liz, you can reach her via her blog, thelizarmy.com and on Twitter @thelizarmy. She’ll be reading the comments, so send her some love. If you would like to submit your profile, you can contact me on Twitter: @memomuse1 or by email at firstname.lastname@example.org. You can read archived posts here:
Here are links to website that offer information, support, and forums for patients and their families. Please add any useful one you know of in the comments and I will add them to the list. Use the hash tags #BTSM and #braintumorthursday on Twitter to find a great community.
Thank you for stopping by my blog today and offering your support for Liz. She is really an Army of inspiration.