If I Only Had a Brain


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

It is my pleasure to introduce you to Amanda.

I hope….

That in life, I will touch many people hearts and help to make a difference in someone’s life.

If I Only Had a Brain Foundation is a non-profit Amanda founded

I wish…

That someone will find a cure for cancer and be able to detect it early on in life.

I dream….

To open my own camp for children and families with children suffering from brain tumors and epilepsy.

I am…

A lover. A person who’s life goal is to help people and to make not so good situations better.

I am a 24 year old who needs to make a difference.

Diagnosis and Treatment…

I was diagnosed with a pituitary tumor when I was 20 years old, one that was treated with medications for about 3 – 5 years. My tumor effected everything; my mood, my life, my dreams and ambitions. It consumed me and made me a completely different person. In March of this year, I was no longer responding to medications and sought out a neurologist to find out my next option.

I had two MRIs in 3 weeks in which my tumor trippled in size. I was referred to a neurosurgeon and the following week was in surgery. Luckily for me, I did not have to have a craniotomy. My surgery was done all through my nose (endoscopic skull base surgery) at New York Presbyterian Hospital by Dr. Theodore Schwartz.

I had a few complications –learned that I was severely allergic to the anesthetic, as well as morphine and ended up with a cerebral spinal fluid leak at my surgical site, as well as where they had done an epidural. I was in a coma for almost a full day where I was in the ICU and then moved to the neuro unit. A week after my surgery, I had to go for a blood patch to fix the leaks, which landed me on bed rest for a month and a 1/2.

While on bed rest, I decided to start my own non profit organization called  If I Only Had A Brain Foundation.

If I Only Had a Brain Foundation

My goals with the foundation are to open a summer camp for children with brain tumors and epilepsy that is focused around art, music and sports; all with theraputic techniques involved. I am holding my first silent auction and benefit dinner September 16th at the Olde Mill Inn in Basking Ridge NJ. All are welcomed. Tickets are $85 please email me (IfIOnlyHadABrainFoundation@gmail.com) if you are interested and would like to share your story! All of this years proceeds will be donated to Dr. Schwartz’s Brain Tumor and Epilepsy research and clinical development fund! Help me help others like us!!

I Wish Luck For All of You


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

It is my pleasure to introduce you to Jill.

I hope…

I hope I can at least be around to meet all of  my niece and nephew’s children. Since I was unable to give my wonderful husband a child, our niece and nephews have always been dear to our hearts. We think of my sister’s children as our own. My sisters have done a great job in the kid department. We have one niece that has started her beautiful family, so we already have the titles of great Aunt Jill and great Uncle Barry and we love every minute of it.

I hope the doctors of the future are taught about compassion and how to use it when it comes to treating patients. I haven’t seen an abundance of compassion, the past few years. I also hope that someone in the medical profession figures out how to treat a gangliocytoma, when it is located in a not so easy spot to deal with during brain surgery (without causing brain injury). I hope that the world continues to grow into a better place to live.

Jill and her husband, Barry

I wish…

I wish happiness, health, love and well-being to my family.

I wish luck for all of you. I wish family could understand I cannot be the person I was before I had the tumor resected, but I can’t. I wish my mother didn’t look at me as if I were dying every time she looked at me. I wish I could talk to her about problems I am having due to the tumor with her, without her breaking out into a flood of tears. I wish the political part of our world was in better shape. I  also wish for a boost in our economy daily.  Hopefully, there will be a jump in that very soon. I don’t like to see so many people hurting.

I wish Dr. C would have told me about the brain in a different way. We were in his office for a back/neck problem to discuss scans he had ordered when he stated ” By the way, you have a brain tumor you need to have checked soon!” Barry and I were dumbfounded as we drove home. This date in January 2009, lead to 3 month search for a physician on our insurance, in Georgia, that did brain surgery and had heard of the lovely tumor in my cerebellum. Dr. O was the 39th surgeon we located and and only the second office that I managed to get past the clerk in. He was a God-send.

I dream about…

I dream about growing old with my soul-mate. Curling up with our pup for a nap on the couch. I wish that pup could be Maggie, but I’m not ready to go anywhere yet. I hate to say this, but I hope to out live her. If I don’t, I’m sure she will take good care of Barry. She is such a loving little lady.  I dream about Frank, my step-son, turning into the man Barry and I both know he can be.

Jill’s pup, Maggie

I am (be)…

I am me, Jill Elizabeth. Nothing more, nothing less. I am a woman with a wonderful husband and family. I am not the genetic tumor in my head or the “academic exercise” a doctor recently referred to me as in an email. I am a thriving, busy wife! I do not like to sit still. I will admit though, lately I am what my body lets me be.

Jill

Diagnosis and Treatment

I was diagnosed Gangliocytoma in April 2009, had a craniotomy for resection on April 9, 2009. Four days after my fifth wedding anniversary.

Favorite quote

“If it is meant to happen, it will.” – author unknown

Three things about me

I believe in ever-lasting love. I love to garden, I still get out and about when my body lets me and I love Sponge-Bob.

Barry and Jill — everlasting love

***

If you would like to contact Jill, you can reach her on Twitter at https://twitter.com/BarryJillBaynes (@BarryJillBaynes).  You can also leave a comment for her here; she will be reading the comments.

If you would like to submit your profile for Brain Tumor Thursday here, please email me directly at memomuse@gmail.com or you can check out the information page and read past archives.  Caregivers and loved ones are welcome to share their profile too, following the same template. #BTSM and #BrainTurmorThursday is a wonderful community reaching around the globe with out stretched arms and love.

“Living with a Brain Tumor Isn’t Easy”


I host profiles of people living with brain tumors to help support and raise awareness about brain tumors.  It is also for loved ones and care givers.  You can read about my connection to brain tumors here (my mother has had slow growing non-cancerous brain tumors since 2000).  You can also read past Brain Tumor Thursday profiles under the tab at the top of my website, titled “Brain Tumor Thursday,” where you can also view the template for submission.  The template is based on my motto and website tagline: Hope. Wish. Dream. Be.

It is my pleasure to introduce you to Theresa.

I hope…

I hope for some understanding. Living with a brain tumor isn’t easy (Neither is the genetic disease I also have that is associated with it). It has caused problems of its own. I hope people would understand where I am coming from before jumping to any conclusions.

Megan Oteri © All Rights Reserved 
“No law or ordinance is mightier than understanding.”
– Plato

I wish…

I wish that members of the medical field who have never heard of either of my diseases, would at least, be willing to learn about them, instead of brushing them off as if they were nothing, when in fact they are (usually) the root cause of everything wrong.

Megan Oteri © All Rights Reserved memomuse.wordpress.com
Hope. Wish. Dream. Be.

I dream…

I dream (wonder, really) what it’d be like to have a true “rock” around.

I am…

I am me. Theresa. Just because I have two rare genetic diseases, it doesn’t make me some kind of freak or something.

I am…

I am me. Theresa. Just because I have two rare genetic diseases, it doesn’t make me some kind of freak or something.

Diagnosis/treatment:

April 2008- craniotomy. L’hermitte-Duclos Syndrome.   August 2008 – confirmation of Cowden’s Syndrome (CS). I throw these in because they are Cowden Syndrome related: 2009 – thyroidectomy; Hurtle Cell Lesion (it was benign); January 2010 – total hysterectomy; endometrial carcinoma (stage 1).

Photo by Megan Oteri © All Rights Reserved memomuse.wordpress.com

3 Things about me:

1. My favorite movie would have to be Rebel Without A Cause (James Dean). I don’t think I could ever get tired of seeing this.

“I don’t think I could ever get tired of seeing this movie.” – Theresa

2. I like  History (some periods more than others) and Geography, and learning about other countries (some more than others).

“Journal Your Journey.” ~ memomuse

3. Favorite Quotes (these are from a few of the songs I really like. If you can name them… you are good!):
  •  “I am just a soul whose intentions are good. Oh Lord, please don’t let me be misunderstood.” – The Animals
  • ” I don’t ask for much. I only want trust.”  – Ringo Starr
  •  ” Where does the love of God go when the waves turn the minutes to hours?” – Gordon Lightfoot
  •  “He cries,  ‘I am leaving. I am leaving’ But the fighter still remains.”  – Simon and Garfunkel

If you would like to get in touch with Theresa to send her a direct message, you can email me at memomuse@gmail.com and I will forward your message.  You can also leave a comment here, as she will be reading the comments.  Thank you for reading my blog and I hope to see you here again next Thursday.  I also write about other things on my blog, so feel free to come back later and visit.  If you would like more information about informaiton, support, and communities to connect with, go to the Brain Tumor Thursday tab at the top of my website.  Thank you.

“Hope. Wish. Dream. Be. Journal Your Journey.” ~ memomuse