About Liz

by Liz on Apr 23, 2011 • 7:53 pm 45 Comments

Brain Cancer Stats

Tumor type: Glioma
Grade: II, Astrocytoma with gemistocytic properties (I like to call it a 2+)
Age at diagnosis: 29
Surgeries: craniotomy 1 (September 2008), and craniotomy 2.0 (February 2009)
Treatment: 24 months of Temodar (chemotherapy), 5 days on, 23 days off
Anti-nausea meds: Emend, Kytril
Anti-seizure meds: Keppra (3,000mg), Vimpat (150mg), Ativan (1mg as needed)
Current Status: Treatment complete as of April 8, 2011

Now I watch the remaining tumor and wait…

The Liz Army existed before cancer. It was my “cool” way of talking about myself in the third-person.

Oh yeah? You and what army?

The Liz Army!

The phrase was my thing. I liked it.

But after a tumor was found in my brain, my friends took the phase as a call to arms and they became The Liz Army. I was no longer alone.

At the time of diagnosis I was without medical insurance. The Liz Army (i.e., my friends) began an epic campaign to raise money for me. They hosted benefit concerts, silent auctions, ice cream socials, and placed jars around town to collect coins. They designed “LIZSTRONG” wristbands, buttons and T-shirts emblazoned with The Liz Army coat of arms.

The fundraising worked because I am still here. Seriously… my army is fearless.

I started this blog as a way to communicate to my army – my friends. And then one day I found other causes beside my own.

I found Erin. And Mark. And David, Kent, Liz Z., Toby and Bea. I found all the people who started commenting on my blog from all over the world who had brain cancer, were close to someone with brain cancer, or they had some other type of cancer and they just wanted to show solidarity by saying “hi” from across the nation.

And now that I am done with treatment, this blog is no longer just about me. It’s for the person freaking out because they got diagnosed today. It’s for the guy who’s about to go into brain surgery tomorrow morning. It’s for the mother of two, who’s on Temodar and Avastin and can no longer breast feed her three-month-old. It’s for the person who just had a bad week on Temodar, and the person who had a great MRI today. And this blog is for people who’ve finished treatment, have gone back to their “normal” life, but freak out the day before the next MRI and need comfort that there’s someone else who knows how they feel.

I commit myself to you. I am now your army.

Your friend,
Liz

Bob Gronhovd

Dear Liz,

Thank you for all of your creativity and willingness to share your experience.

-Bob Gronhovd (Nikki’s brother-in-law)
ericgodoy3

THERES A NEW WARRIOR IN THE LIZ ARMY AND WE GOING TO WIN THE WAR THAT MAID LIFE HARD BUT MADE US LOOK AT LIFE LIKE A GIFT GOD BLESS YOU ALL
Emily Morrison

Hi Liz,

I am enjoying reading your blog and finding hope through you! I was admitted to the hospital for emergency brain surgery the day you finished treatment, which is kinda cool. My blog is here…. http://www.caringbridge.org/visit/EmilycMorrison/journal glad you’re doing so well!

Your, new, friend,
Emily

http://thelizarmy.com Liz

Emily:
Thanks for stopping by and saying hi!
I’m checking out your blog too–reading about the steroids. They’re the worst! I hated the face swelling… as if you don’t feel bad enough, suddenly you have a big round face. Ugh!
Heal well, and let’s keep up on each other.
Your friend,
Liz

Scott Holloway

I thought I was too old to join the Army, but here I am. It’s nice to hear other peoples experiences and feelings dealing with their brain cancer. I’m glad I found you , Liz.
http://twitter.com/malizard Miss Lissa

Hi,
i found your blog today and while i’m sorry u had to endure this crap, i am glad you are here. i have stage 4 glioblastoma (brain cancer) and it is also “incureable” . i have had a hard tome finding people who get it. it seems you do. i have a blog too, melissakickscancersass.com tho it is nowhere as awesome as yours. i hope we can be friends.
Liz Y

Hey Liz,

My name is also Liz, and I have been reading your blog for several months now. From the last few posts you had it seems that you are doing well. As of April it seems life has been much better for you, glad to learn your hair is growing back at a rather enthusiastic pace. It’s great to learn that you are interested in speaking to other survivors and fighters of cancer, openness and sharing these experiences empowers those who are only starting their journeys. That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey. Either way, thank you so much for your writing. Take care and best regards.-Liz@ihadcancer.com
Patrick Macedo

Liz,

I found out 2 weeks ago that I have a glioma. After the initial shock and a few days crying I decided to do the best I can with the time I have left, and your blog had an incredible positive effect on me. I will post my story in a blog and share the inspiration i got from you, thank you! You demonstrate that a tumor is not the end of our journey, but just the beginning of a completely new one. God bless you!

Patrick Macedo, from São Paulo, Brazil

http://thelizarmy.com Liz

Patrick,

I am glad you are going to share you story with others. Make sure you send me a link!

What kind of glioma do you have? Just because you have a diagnosis it doesn’t mean you only have limited time left. We can be that group of people who survives. Your attitude will lead you to where you want to be.

Take care.

Liz

Karen

Hi Liz,
I have brain cancer too. I was just diagnosed with recurrent disease after being off tmt for 1 year and am doing some on-line research and came across your blog. It’s always good to know I am not alone in this fight against this crappy disease. Thanks,
Karen
tkemrpodonnell@yahoo.com
http://www.facebook.com/people/Katerina-Kovaleva/1457145618 Katerina Kovaleva

Hi Liz,

My name is Katerina, I live in Russia and, yeah, I seem to have brain tumor. Here is Russia everything is far too different from what is in Europe and USA. I’ve been reading your blog for a year or so and now decided to show up. I would be happy to become your virtual friend and share my story. My e-mail is i_m_katherina@hotmail.com

http://thelizarmy.com Liz

What type of brain tumor do you have? How is treatment in Russia?

Katerina

Treatment in Russia is I think more or less the same as in the USA or Europe. At least methods are the same. But there are far less good doctors as well as good equipment (which is especially important) and another important thing is that everybody wants to earn money or your problem. So it’s not always easy to understand if they recommend this or that because it is really needed or just because they want to make money. Still there are good people

http://thelizarmy.com Liz

Wow, thanks for explaining the difference. I only hope they have your best interests at heart.
*hugs*

David Arons

Dear Liz, your blog is terrific info and very caring. Thank you. National Brain Tumor Society would like to ask you a couple questions off line. My email is darons@braintumor .org. I am the Director of Public Policy. I’d be grateful to connect with you. – David Arons

http://twitter.com/TheLizArmy The Liz Army

Done and done. Thanks, David.

Ingrid

Dear Liz,

Ingrid, European “cancer twin” here again . Thank you so much for the
last few posts, I really enjoyed reading them. You are totally right in
what you’ve listed as reasons for continuing to update your blog. It means a great deal to a lot of people, I think. And when it comes to this reader in particular, I know for sure that it helps to keep me going, fighting, living.

I have a couple of questions for you, because I unfortunately have
to get treatment again very soon- and quickly decide on which route to
take. I am wondering why and how you where able to start
chemotherapy without first having radiotherapy. I don’t think it is very
common for your type of tumor? Does it have anything to do with it
having gemistocytic properties? Or some particular genetic marker? If
you have time to answer me I would greatly appreciate it. Finding it hard to find a doctor with enough time to inform me sufficiently on the subject….

All the best,
Ingrid (ingrid@strangedays.no)

http://twitter.com/TheLizArmy The Liz Army

There was no debate about my course of treatment. With a Grade 2 glioma the usual treatment is surgery, then watch and wait. After the tumor grew back, we knew I’d have surgery and we THOUGHT the tumor would be a higher grade and assumed I would have radiation and chemo (which is standard).

But after the second surgery we realized the tumor wasn’t a Grade 3 (yet). Due to my age (29 at the time) and the fact that I need to live a long, full life and be able to hold a job, my doctors did not want to radiate my brain. I got a second opinion from UCSF and they agreed with my neuro-oncologist to go with the chemo and no radiation.

I was able to be on Temodar chemotherapy for much longer than other people (24 months) for two reasons: I didn’t have radiation at the same time, and my body could handle it. About 16 months in to chemo my dosage was lowered so I could continue taking it.

The plan was (and still is), if I see more tumor growth I will consider having radiation at that time. Fortunately, that time has not come.

Patrick Macedo

Liz,

Patrick again, from São Paulo, Brazil. After my surgery we were finally able to say with certainty what kind of tumor I had. It was a grade 3 oligoastrocytoma, on my right insula. My glioma got very close to the motor nerves, making its removal tricky. I decided, at the advice of my doctor, to operate it in France with Dr. Hughes Duffau. I could not believe it but I was walking and talking right after the surgery. Today, 24 days after the surgery, I already showed up to work a bit. I met my onchologist on Wednesday and will start chemo in 2 weeks. Check out my blog, http://www.patrickmacedo20.blogspot.com, i think you will like it, I did it based on your example. Thanks for being who you are, you are saving people all over the world, I hope I can qualify as an honorary General for the Liz Army. God bless you Liz, I liked your tatoes!

http://twitter.com/TheLizArmy The Liz Army

Hey, Patrick!

I am glad the surgery went well–in France, no less!

I love the blog and I added you to the “Resources” page as a brain cancer blogger.

You can totally be an Honorary General.

Patrickdemacedo

Liz,

You are rhe best, thank you! Tomorrow I start on Temodar, wish me luck! This week I spent an afternoon with an awesome friend who survived a stomach cancer and he shared that we have a mission in life: to give hope to those that might feel hopeless, just like you did when I felt that way. We can and will win this battle, one day our army will be together for a big party, in Brazil, US, Europe, you name it, but today I see that our blogs are much more than how we fair against our tumors, but about living a purposeful, happy and great life, and there is nothing that does that better than a party. Let’s stay in touch, long live The Liz Army!

Mike Postorino

Hi,

I am contacting you on
behalf of the Mesothelioma Center at Asbestos.com. I was wondering if you would
be interested in our organization contributing an article about mesothelioma
cancer for your site. Mesothelioma is a rare cancer that appears in the lining
of the lungs, heart and stomach. Our goal is to bring awareness to this disease
and prevent future cases by educating the public about the dangers of asbestos.
Additionally we work 1-on-1 with individuals and their families to help them
find local doctors, treatment centers and support groups. We have a team of knowledgeable
writers that would love to write original content about the topic for your
website and its visitors.

If this is something you
would be interested in or if you have any questions please let me know. I look
forward to hearing back from you. Thank you for your time.

Best Regards,
Mike Postorino
National Awareness Director
email: mpostorino@asbestos.com

http://thelizarmy.com Liz

Mike,

Thank you for contacting me.

I primarily blog about brain tumors, brain cancer, life as a cancer patient, young adults with cancer, survivorship, and cancer advocacy.

Mesothelioma is outside of my beat.

Liz

Valerie

Hi everyone,
I was overwhelmed reading all of the comments here and hearing about everyone’s journey.
I am wondering if anyone knows if there is still a study taking place re genetic links and gliomas…I read an old post from Gliogene. My Mom was recently diagnosed with Stage 4 GBM. She is the 4th person in our family who has had the same tumour…which is pretty scary. We would like to have more investigation into the genetics of this and don’t really know who to contact. I live in Victoria B.C.
Thanks,
Valerie

http://thelizarmy.com Liz

From what I understand, Gliogene is sill working on their study.

You should definitely go to their website and contact them about participating. Everything is free!

http://www.gliogene.org

Tom Kirkland

Liz,

Your’e site is fantastic, it should be a big help to fellow people going through it. I’ve now beaten four and still here, so happy to be here every day.

Great to see your’e page.

My last operation was in July 2011.

we made a video of recovery on
http://www.braintumorbattle.com

Thanks and hope all goes well

Tommy

http://thelizarmy.com Liz

Thanks! You have a great site too.

Anonymous

You are a fighter and don’t give up! I donlt know how you find the time to do so much communit service work and hold down a job and a husband and still are filled with hope and happiness for yourself and others. No wonder you were a succesful rock drummer! You keep right on plugging and put your all into everthing you do! Everyone that reads about you is truly proud of your commitment, My heart and prayers are with you. You are a true winner!

http://twitter.com/TheLizArmy Liz X

How do I do it? No kids! HA!

I love that you correlate being a rock drummer with fighting cancer. That gives me major street cred.

Js-59

Thank you for your blog,it’s nice to read things from someone who i can relate to .I also have a grade II astrocytoma and was also diagnosed in 2008 only mine is inoperable I think I spelled that wrong oh well.You give me strength to keep my head up and stay strong.you’re in my prayers and if you have any baseball questions just ask big fan,GO REDS. and go Liz.

http://twitter.com/TheLizArmy Liz X

Go Giants!

Meganaridge

Stumbling upon this blog brought me great comfort tonight. Thank you for sharing your story.

http://twitter.com/TheLizArmy Liz X

*hugs* to you

http://hopeforheather.wordpress.com/ heather

Love this! Your journey and story helps those with brain tumors as well. Thank you!
Anonymous

hi liz, jack here. good to read that you are stable.

a few years ago i lost a close friend to GBM, so needless to say this is close to my heart. when she was diagnosed, I was concerned with her treatment options. today i am working on building a Q&A for BT community. in one of your post, you had a link to pubmed. I am hugely into researching treatment options. I came up with this for GBM http://pubmedly.com/disease/glioblastoma/

also I feel that there isn’t one place where people affected by BT can talk to each other easily. I want to invite you to help me design a social network for BT community, I want to incorporate things that you have already done such as issues related to being newly-diagnosed, in treatment and surviving. those are great ways to look handling and living. you can reach me at jack@pubmedly.com thanks
annapanda

Hi Liz,
I just found your blog today and I am sorry to hear about your diagnosis. I am glad, though, that you are doing well.
19 years ago, my older sister was diagnosed with a grade III oligodendroglioma that formed itself on her brain stem. She was three months old. Thankfully, she has now survived her cancer. I couldn’t be happier.
Now, I have created a website helping people with cancer. I have given them a starting point, I hope. Please do check it out. Also, I would love if you would write to me about your battle with a brain tumor.
To Liz’s Army:
check out the website:

http://getthroughittogether.weebly.com/
It might help you if you have a diagnosis as well.
Thank you so much, everyone. Much love,
Anna
Liz Rains

Hi Liz, I am one of those freaking out! I found out on Sept 25th that I have a low grade gloma taking up residency in my occipital and parietal lobe. It’s 6.5 by 2.5. They told me I had to see a neuro surgeon and I really wanted everything to fade out to black. My husband had just enjoyed his first year without treatment for his second cancer, and we are still reeling over our beloved blue-tics diagnosis of nasal carcinoma. This just can not be true. And yet, on October 11th my appointment with both Dr. V. Levin and Dr. P. Reddy at Kaiser’s Redwood city Neuroscience Department, absolutely suggested otherwise. November 7th is my surgery date…..I have no signs of a tumor in this are of my brain, the only reason I had to have a MRI was because of crazy face pain that the doctor thinks is trigeminal neuralgia…. Help…. I need to be woken up! Thank you for sharing your experience, strength and hope with the world. I’m glad I found you. Liz R.
Cameron Von St. James

Hi Liz,
I have a quick question about your blog. Could you email me when you get a chance?
Cameron

Liz

Done.

http://www.facebook.com/JD.Rhodes.83 JD Rhodes

Clicking on your link while looking for a funny brain cancer pic for my facebook update stopped me in my tracks. I don’t tear up often, but you’re like one of my other twins – the other being the manager of cancer care at our NCI-CCC here in Alabama. Your picture of btsm made me laugh and ball my eyes out all the same. I’m going on my third year on treatment; one cranio, a current treatment of Temodar with 42 initial doses followed by at least a year of the 28 day cycle, as well as simultaneous radiation.

The other twin, Callie Dunaway, had the same medication treatment as you, as her Astro II was inoperable. She also has a creative blog http://calliesjourney.blogspot.com/ , as well as runs a program for new patients to receive a one-on-one connection with surviving patients in order to get a solid “I’ve been there, I know what you’re going thru, and we can kick this thing’s ass!” POV.

Thanks!

http://thelizarmy.com Liz

Thank you for sharing! Glad you liked the photo.

Samantha Devore

Reading through some of these postings has made me happy that you have helped people during their hard times and them help you. Thank you for your stories, and God Bless.
Jeff S

Women have been able to fight in this army since day one!!
Joanne1953

Our 25 yr old nephew was given the news today that he has brain cancer. The news is so new that I don’t even know the name of his type yet, but we were told it is a slow grower. Thank you for writing your blogs and being “our” army now. I have always been an advocate of “Pay it Forward” which sounds like what you are doing with your Liz Army. David is embarking on a scary road and knowing there are people like you who know what he is facing and will face will undoubtedly help him as he travels it. Thank you again.
http://www.facebook.com/bddixon83 Brittany Dixon

I feel you brain…* coughs* pain.
I just finished my radiation therapy & adjunctive temodar that I took everyday throughout radiation. It’s been a little over a week! Happy dance! and I start my maintenance dose of Temodar in a few weeks & I’ll be doing the 5 on 23 off business. I’ve got 6 months-2 years, but if I know my oncologist he’ll take me to 2 years lol…
I couldn’t find an email address to message you, but I haven’t known anyone else to use temodar… I know no one my age that has had any similar treatment sooooo…
I’m curious as to how your body handled the chemo… i was on steroids for brain inflammation with my radiation therapy, so that actually kept my appetite up my vomiting nada, and rarely any nausea… But my week post treatment without steroids has been rough…. so that makes me question what my experience will be like when i’m just doing the chemo minus the roids.
feel free to find or message me on FB or here if you’re able to…
Thank you

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Brain Cancer Stats

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