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  • Writer's pictureTiffany Crowe

Brainy Background

Originally diagnosed with grade 2 Ependymoma in 2006, my fight continues 10 years later as my tumor has upgraded to a grade 3 Anaplastic Ependymoma, which is more aggressive than before and will require additional treatment that I have not yet experienced. Radiation and chemotherapy are two words that I never thought would be part of my daily routine, but I am ready to continue as a fighter and come out more of a survivor than I already am. My understanding of Ependymoma tumors is not a lot. There is not a great deal of research done on these tumors due to the rarity. My tumor has always existed in the right frontal lobe of my brain and has proceeded to return after two surgeries and one radiosurgery, now more aggressive than before. The tumor was originally identified because I was having focal point seizures in my face that were confused with stress, then one day in March 2006 I had a grand mal seizure which brought me to the ER and lead to the diagnosis of a tumor that had been believed to be growing my whole life, due to the size being described as that of a clementine. Once this tumor was removed, a 3 mm growth came back two years later, which lead to a second surgery. Two years later, repeated, except this time treatment came in the form of a quick dose of radiosurgery rather than craniotomy. I was then told that I was in the 'clear' unless I came down with symptoms that could tie to new tumor growth. In early May 2016, I noticed an increasing weakness in my left hand, also described as a lag in what I wanted my hand to do and the time it would take to do what my brain was telling it. I had an MRI two weeks after the weakness started and at this point I couldn't zip a zipper, put earrings on, put my hair in a pony tail, or essentially complete any task requiring fine motor skills of the left hand. Low and behold, the MRI showed new tumor growth accompanied by a cyst produced by the tumor that was causing pressure to the motor strip of my brain. SURGERY was mentioned again, this time, however, my surgery would be done AWAKE. This was terrifying but I had the utmost confidence in the staff at Henry Ford so I knew I was in good hands. I had an awake craniotomy on May 23rd and was home on May 25th. At this point, I was waiting for the pathology results to determine the next steps. Next Steps: 6 weeks of radiation and chemotherapy, brand new to my fight but something I was ready for as I wouldn't be content with continuing to monitor with MRIs considering this tumor is a bitch and continues to pop back up right when I least expect it. The word 'cancer' has also been used which has strong emotional ties, but I am trying to let that word bring me down. I am currently waiting to have an MRI to determine if there are Ependymoma cells on my spinal cord (this tumor tends to grow on the brain stem/spinal cord) and once the MRI is done, my treatment will be planned and begin within 10 days of the MRI results. All I can continue to do is stay positive.

Hardships often prepare ordinary people for extraordinary destiny - C.S. Lewis

I would not be in the mindset that I am in now if it was not for the constant support from family, friends, and those I am meeting through Facebook communities going through the same situation. Words can not explain how grateful I am to have such an incredible support system in my life. To provide support, all I ask is to listen and be sensitive to the situations that myself and others are going through. Sometimes we need to vent and not hear advice and that is OK. Sometimes we need to yell and be pissed off and that is also OK. Everyone copes in different ways at different times. I think the most important thing is to be there to listen, but also just being there in the moment. Be there to make someone laugh, be there to tell them stories to get their mind off the craziness going on inside, and be there to give a smile and a hug. Those go a long way. I take pride in where I have come in my life and the work that I have done to get to where I am. I have been through difficult times as far as not appreciating myself, feeling down and depressed, struggling with money, riddled with anxiety.... It's time like these where unfortunate events lead to a more positive outlook on life. It's unfortunate that even when you gain a more positive outlook on life due to events like this, that you can return to the mindset you had before in the blink of an eye. It happened to me so I'm sure it happens to others. My goal this time is to not let the negativity return. I am using this time to not only constantly choose positivity (thank you to my job for instilling this value), but also to help those around me. There are larger things in life to stress out about than dropping a piece of food on the floor, or stubbing your toe on the couch. Why do we overreact over such petty things? This is a hard habit to break, but my mission at this point is to reduce the level of stress that these 'tiny issues' cause, and reserve my stress for times when the stress can be helpful in the situation. No one is perfect, I will never ever be, but if I can work to be the best version of myself then I will be happy and will love the life that I live. That is my current goal. Oh and training for the Detroit Free Press Half Marathon that is happening in October 2016!

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