From the NBTS Headquarters Blog: My story
Erin’s Story - Do Not Stop Living
Posted by: Jill at NBTS on June 1, 2010 at 11:56AM UEDT
This week’s story comes to us from Erin, a member of the NBTS Patient Support Network. Erin, age 33, is a survivor diagnosed in 2003 with an epidermoid. She describes her experience below.
Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
I actually started to have bouts of vertigo when I would do sit-ups at the gym or roll over in bed. So I went to my regular physician, who saw no ear infection, but suggested a neurologist. The neurologist recommended that I get some more tests to rule out thyroid disease (which seems to be a possible answer to almost any symptom in the world), multiple sclerosis and/or lyme disease. So, I went for the MRI on a Friday in 2003 and on Monday I had a message requesting that I call back regarding the results of my scans. No emotion, no hints, just, "Please call us back when you get this message." I was diagnosed the next day with my boyfriend (now husband), mom, dad, and aunt by my side.
What is one piece of advice you would have for someone who is newly diagnosed?
Number 1: Do not stop living.
Number 2: The shock of a brain tumor diagnosis is unlike any feeling in the world. It's scary to hear those words, "You have a brain tumor." Diagnosis is the time you will use your brain the most! Do research on the internet; seek out teaching hospitals; talk to neurologists, neurosurgeons, ENT doctors, physical therapists that specialize in vestibular problems, oncologists (if cancerous). Seek out your family, your friends, and your spiritual community for support.
What have you learned from this experience?
From the time I was diagnosed I was truthfully very calm. I do believe strongly in the power of positive thinking and was very lucky to have so many friends and family pulling for me. I also had age on my side. I was 25, had excellent doctors, nurses, and hospital staff working with me. I still get a little bit nervous before my check-ups every two years (which have been clear and are now every 5 years). Having a brain tumor has changed my life and brought so much joy to it. I really do value life more, but I still have the same flaws as any other person. That said, I don't get as nervous for the doctor as I used to and I laugh at the saying, "It's not brain surgery."
What is the most helpful thing someone has said or done for you?
The people that surrounded my parents and husband while waiting for me to come out of surgery. Knowing that they were supported allowed me to focus on getting through surgery.
What do you hope for?
That there will be more advances in bloodless (non-invasive) surgeries for benign brain tumors.
If you use a creative outlet or form of expression, what is it and how has it affected you?
I discovered a love for running after my surgery. This is funny for several reasons: I couldn't walk after surgery because my vestibular (balance) system was mis-firing, and I always HATED running. I enjoy the personal competition I have with every run, whether competitive or leisure. I have the opportunity to improve with every step I take.
Describe your experience/journey in three words:
Grace; determined; joy.
Does your tumor have a name?
Steve - The "Brain Cloud".
If you could have your own personal theme song, what would it be?
"Baba O'Reilly" by The Who. I think it's awesome. How can you not be uplifted after listening to that song?
Do you have a “survivorship care plan”? If so, what does it involve? If not, what would you like to see as part of a brain tumor survivor’s care plan?
I do not have a formal “survivorship care plan,” but I would describe my care plan as a life that balances work, family, healthy living, exercise, some fun with appropriate follow-up with medical professionals. As I have suggested above, never stop living.
Get Your Head in the Game!!! Brain Tumor Action Week is May 1-7, 2011
Take Action. Show support. Find a cure for brain tumors.
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