Tag Archives: BT Buddies

I Am Stronger Now…

Posted on by memomuse
5

"Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." - Dr. Seuss

I host profiles of brain tumor survivor’s every Thursday on my blog.  It is my pleasure to introduce you to Stephanie – a brain tumor survivor, who had brain surgery two years ago to remove a baseball size tumor.  She not only is an inspiration to the brain tumor community, she is an inspiration to us all.  Thank you Stephanie for sharing your story.  If you are new to this blog, read this post to find out about how #Brain Tumor Thursday got started on my blog.   You can read last week’s profile here, about a brave man named Tom McLain, who is also an inspiration.  If you are interested in participating, you will find information at the end of the post.

This is Stephanie’s story in her own words.

“I am stronger now than I was before my diagnosis.” – Stephanie

I hope…

I hope to achieve my dreams and not take life for granted. I also hope that in my lifetime I will see researchers find a cure for brain cancer and brain tumors.

I wish…

I wish love, happiness and patience to all of those suffering with this disease and the caregivers, family and friends who help them out. I know I could have never gotten through this without the support of my father and my aunt. Plus all of the love and support of my friends who I work with, friends from school, and friends online.

"You never know what you mean to people until they band together to send prayers, good wishes and good thoughts to you during your recovery." - Stephanie

You never know what you mean to people until they band together to send prayers, good wishes and good thoughts to you during your recovery. I never took them for granted per se, but two years later, I know what I mean to them and give it back freely. They even set up a facebook group for me: https://www.facebook.com/groups/105485876149115/

I dream…

I dream about living life to the fullest no matter what. I was like most people going through the daily motions of life and then BAM! It hits you right in the face. I thank God every day for being here and I think I still have so much left to do — maybe it’s bringing brain tumor awareness to everyone I know and am going to meet so we can end this horrible disease.

I am (be)…

I am stronger now than I was before my diagnosis.

"I am stronger than I was before my diagnosis." - Stephanie

Artwork by Jennifer Pick.  Click on this link to go directly to the artist’s website.

In the middle of all of this, I was getting my Associates Degrees in Network Administration and Cisco Telecommunications. I had to drop the spring semester and I was only two semesters away from graduating. My Cisco teacher allowed me to make up the class I dropped in the spring so that I could stay with my section for the fall class. She was trying to show me that she believed in me and that I could do it. I rose to the occasion and showed her how determined I was to get back to my so-called normal life. I got a B in both sections.

Diagnosis and Treatment…

My brain tumor diagnosis was a menigioma. For those of you who know about these tumors — they are usually small in size and are benign. Mine was the size of a baseball, required nine hours of surgery to remove it, and is a Grade II Tumor defined by WHO (World Health Organization). My neurosurgeon said it was benign in nature, but malignant because of the sheer size. He put it bluntly to me one day while he sat in my hospital room, “You shouldn’t be sitting here today, by all accounts you should be dead.” I now have a titanium plate in my head covering half of my forehead all the way back to the top middle of my head. I also had radiation that made all of my hair on the top and sides of my head fall out. It was one thing to know it could happen and another thing to be standing in the shower pulling clumps out while washing my hair. I now have to take seizure medicine twice a day and my brain is still swollen.

Favorite quote…

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” ~ Dr. Seuss

(I’d never heard it before and @uvmer tweeted it the first time when I joined #braintumorthursday. I just loved it.)

Three things I’d like to share…

1. Don’t think “It can’t happen to me,” because it can. I’m the perfect example of that.
2. Just because people have a benign brain tumor — they are not lucky. It’s still a tumor in your head and it messes with your brain function. (No offense to those who have malignant tumors. I always say there are people worse off than I am.)
3. I just celebrated my two-year anniversary of my brain surgery on St. Patrick’s Day 2012. So far there is no sign of the tumor or sign of regrowth either.

Photo by (c) Megan Oteri - All Rights Reserved
Remember, a rainbow is brightest after a big storm. - memomuse

If you are a brain tumor patient, survivor, or care giver and would like to share your story, please contact me at memomuse@gmail.com.  If you read this post, you will find the template for the profile feature, as well as, the connection I have to brain tumors.

You can also find me on Twitter, especially on #braintumorthursday.  Leave me a message here in the comments  at my blog.  If you are on Twitter, be sure to put in the hash tag, “#braintumorthursday” to find support, information, and a whole community of amazing people doing their part to raise awareness and offer each other kindness and support.  You can also put in the hash tag “#BTSM” which means “brain tumor social media.”  You don’t have to have a Twitter account to get the information.  Just go to http://www.twitter.com and put in the two hash tags (#braintumorthursday and #btsm) to see the links to many websites.  You can also use a search engine, such as Goggle, to do this.

Here are several links to organizations, with a lot of other links and information about brain tumors.

Please feel free to add your link in a comment if it has to do with brain tumor support and information.  If you wish to get in  touch with Stephanie, you can reach her by leaving a comment on this blog and I will make sure she gets your message.  You can also email me at memomuse@gmail.com and I will forward the message to her.  Stephanie will be reading the comments here on this post, so give her some love.

Thank you for tuning in today and supporting #braintumorthursday.  We look forward to seeing you here at http://www.memomuse.wordpress.com every Thursday for #Brain Tumor Thursday and on Twitter every Thursday.  Thank you for your time.  BT Buddies has expressed that they would like to repost these profiles on their website too.  More information on that coming soon.  Tune in next Thursday.

Hope. Wish. Dream. Be.

~ memomuse

#Brain Tumor Thursday – Tom McLain

Posted on by memomuse
11

If you are new to this blog, read this so you know what this project and post, #Brain Tumor Thursday, is about.

It is my pleasure to introduce you to Tom McLain —  husband, father, friend, family man, and overall awesome person — who also happens to be fighting (and doing a great job might I add) brain tumors.  These are his words, in his voice.

“What then do you do with the statistics?  I choose to think of them as merely a guide.  With my brain tumor, I choose to believe that my chances of survival are phenomenal.”  ~ Tom McLain

I hope…

How can you have a brain tumor and not hope for a cure?  Hope does not completely drive me, because it does have to be tempered with reality — the statistics are often grim.  But even in the face of grim statistics, one can always hope and pray about being an outlier, being the one patient who brings the average up by living far longer that the average or even the top number in a range of years.  The companion to hope is faith in God.  As I have said before, “As weapons against cancer, faith is the bow and hope is the arrow.”

I wish…

It is my sincere wish that no one else ever has to face a diagnosis of a brain tumor.  One of the wisest things said to me at the beginning of my journey was the observation that the central question was not, “Why me?” but “Why not me?”  That shifts the focus from internal to external and allows you to make wishes for others.  My hopes and dreams tend to be about  me and my family and my wishes tend to be broader in scope.

I dream…

With the diagnosis of a fatal disease and no clear answer as to how long I will survive, I dream about the events in life that I may miss.  I have three daughters, so I dream about walking them all down the aisle to be married.  I dream about grandchildren, being convinced that I will be an awesome grandfather.  I dream about being financially secure enough to retire while I still have enough health to fully enjoy life with my wife and family.

“Never underestimate the power of God to use your flimsy self to his glory.” - J.E. Oppenheim

I am (be)…

While it may seem entirely strange to most, I am in many ways thankful for my brain tumor.  Before the tumor came along, I thought James 1:2-4 was a completely insane passage in the Bible:

2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. (NIV)

"The most difficult time in any cancer battle is the time between diagnosis and deciding on a plan of attack." ~ Tom McLain

How on earth could you ever look upon life’s problems as a joyful experience?  But then I began to realize that I would have a phenomenal opportunity to watch God work, both in my life, and in the lives of others around me.   As explained by American author and brain tumor patient, J.E. Oppenheim, “Never underestimate the power of God to use your flimsy self to his glory.”  So far, the tangible benefits of my cancer have been that I have been taught faith, hope, courage, resilience, and purpose.

"So far, the tangible benefits of my cancer have been that I have been taught faith, hope, courage, resilience, and purpose." - Tom McLain

It would be unfair of me to suggest that I have fully adjusted to my “new normal.”  The swirling effects of the tumor — chemo, maintenance drugs, being a male over 50, and possible radiation damage — do provide for some unevenness in my daily approach to life.  If fact, you could easily encounter me on a given day and conclude — “This cannot be the same guy.”

Diagnosis and treatment…

As for the tumor itself, a mass was detected in an MRI at the end of May 2009.  During the first week or so of June 2009, I had a brain biopsy and it was determined that my tumor was an anaplastic oligodendroglioma.  Not only was that good news because they are slow-growing tumors, but I also had what is known as a 1P, 19Q chromosome in the tumor cells which made them more susceptible to a particular chemo drug called Temodar.  On June 22, I turned 50, so you could say the tumor was my birthday present!  After getting a couple of consultations, it became clear that surgery was not an option, so we began Temodar in July 2009.  Eighteen rounds later, I finished Temodar in February 2011.  No too long after that, I started targeted brain radiation and completed that in July 2011.  The net result is: that as of today, my tumor is smaller and stable!

"The net result is: that as of today, my tumor is smaller and stable!" - Tom McLain

It terms of a favorite quote, there are many that come to mind.  There is actually a website that has been kind enough to add a few of my quotes to those of others in the brain tumor community and other cancer sufferers.  I go there frequently for inspiration.

https://sites.google.com/site/tummorwarrior/home/quotes-about-cancer

If you are a brain tumor patient or survivor and would like to share your story, please contact me at memomuse@gmail.com.  If you read this post, you will find the template for the profile feature, as well as, the connection I have to brain tumors.

You can also find me on Twitter, especially on #braintumorthursday.  Send me a message there or in the comment list here at my blog.  If you are on Twitter, be sure to put in the hash tag, “#braintumorthursday” to find support, information, and a whole community of amazing people doing their part to raise awareness and offer each other kindness and support.  You can also put in the hash tag “#BTSM” which means “brain tumor social media.”  You don’t have to have a Twitter account to get the information.  Just go to http://www.twitter.com and put in the two hash tags (#braintumorthursday and #btsm) to see the links to many websites.  You can also use a search engine, such as Goggle, to do this.

I have several links on my blogroll (link list in sidebar to right) which are organizations with a lot of other links and information about brain tumors.)  But in case they do not show up, here is a direct list:

Please feel free to add your link in a comment if it has to do with brain tumor support and information.  If you wish to get in  touch with Tom, you can email him at ThomasLMcLain@gmail.com, but be warned — he does not check it often.  He’ll be reading the comments here on this post, so give him some love here too!

Thank you for tuning in today and supporting #braintumorthursday.  We look forward to seeing you here at http://www.memomuse.wordpress.com every Thursday for #Brain Tumor Thursday and on Twitter every Thursday.  Thank you for your time.

Hope. Wish. Dream. Be.

~ memomuse