Thursday, August 28, 2014

Brain Tumor Awareness Hashtags

thought I would put together a list of hashtags for brain tumor awareness. I have been fortunate enough to meet others online through blogs and other social media outlets. I hope to spread awareness. When I was diagnosed the only form of information I could find was on the internet and google can be your worst enemy. The things you read are often scary and impersonal. Looking through these hashtags I have been able to see others inspirational journey’s. If you or someone you love has been diagnosed with a tumor I encourage you to participate in a walk for awarness. The National Brain Tumor Society hosts a walk around the U.S. Seeing others walk to raise awareness and funds is very moving. Visit their website for more information.

Grey matters too!


#BTSM (brain tumor social media)
#NBTs (national brain tumor society)

#btpit (#Pituitary)
#btast (#Astrocytoma #glioma)
#btgbm (#Glioblastoma)
#btlym (#CNSlymphoma)
#btmen (#Meningioma)
#btodg (#Oligodendroglioma)

#btsch (#Schwannoma #AcousticNeuroma)

#iWearGrey #GreyMatters #GoGreyinMay
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kubler-Ross

Tuesday, August 19, 2014

“It has been a beautiful fight. Still is.” –Charles Bukowski

Another day, another MRI. Anymore of these and I'll stick to the fridge. 

Sleep doesn't come easy to me so after a whopping two hours of sleep, Alton shook me awake before he left for work. Thank goodness I trusted my instincts the night before to set a "just in case" alarm for after he left. I'm like an errant child when it comes to mornings. I always make him promise me that he'll make me stand on both feet or drag me to the shower before he leaves. All my pleas ending with "no matter what I say or do k?" He always agrees but it never fails, he leaves and I’m still in bed. Even sleep deprived I manage to convince him to leave me alone either that or he just has just surrendered to my stubbornness. So my alarm sounds off at four sharp & I start doing the illumination game in my head, trying to figure out what I can cut out of my morning regimen to hit the snooze button. Ahh yes ten more minutes should do it. At four-ten it goes off again and just before I hit snooze for another ten minutes, I quickly remind myself that my neurosurgeon is gorgeous so I'm going to need those extra ten minutes to cover up this God awful adult acne ha ha!

I remember my first MRI was on a Sunday morning, in July, of 2012. After being ill for so long and countless medications falling short, my doctor told me she suspected I had a brain tumor.  She & I never took a liking to one another. When she told me she was almost certain that I had a tumor I just gave her this half quizzical, half eye roll look & smirked like yeah, sure, ok, whatever, another damn test. I was even more irritated that they scheduled me first thing on a Sunday morning. At the time it seemed a bit exaggerated to me but keep in mind at that point I was tired of being poked & pried at like a lab rat for dead end answers. I woke up that morning & didn't bother asking anyone to go with me. I was used to being at appointments for hours and I didn't want to burden anyone with it. After my MRI, the technician’s demeanor towards me changed. He went from all business to very nurturing. He was suddenly very warm & when he walked me out he said "May God bless you sweetheart" I thought it was sweet but I shrugged it off. I figured well its Sunday, maybe he's just trying to keep the Sabbath day holy & went on my way. 

Less than a week later I woke up to a dozen missed calls & multiple voicemails urging me to call the doctor back because she needed to see me that day! That day? Ugh my stomach knotted up & the MRI technicians voice replayed in my head..."May God bless you sweetheart"...I wondered did he know then? Does he just take the images or does he read them too? My goodness I had no idea how any of this MRI business worked. 

I asked my dad to go with me to my appointment because I knew she was going to confirm her suspicion of a tumor. I needed a second set of ears just in case I missed something. 
I'm sure no one that was there that day will ever forget that appointment. I'm talking about the staff, the nurses, the doctor & my family. She had a box of tissues waiting for me little did she know she was going to need boxing gloves (figuratively speaking). That by far was the ugliest shouting match I had ever been in. Sorry Dr. Reddy but you picked the wrong girl to try and withhold information from. I left with the understanding that I had two tumors and brain cancer.
(I’ll save that for another blog post though oh & no I didn't have brain cancer-she was wrong)

Anywho I dread MRIs! I have been diagnosed with Attention Deficit Disorder so sticking me in a confined tube that you can't move in for an hour is like a torture chamber. It would probably be easier if I took my prescribed Adderall Xr but it zombies me out & I've lived my whole life without it. People who put their kids on these meds are wimps. Learn to deal & get on with it (again another topic, for another blog)  

I've only freaked out during one MRI, it was right after my first two surgeries. I had almost fifty staples in the back of my head, I was in pain, exhausted from several hours of surgery & I panicked. I have never in my life felt so claustrophobic. They give you a remote to press if you want to speak with the technician while you are in there but I didn't even think to push it. I suddenly felt so overwhelmed and I just started freaking out. They tried to convince me to keep still so they could continue but their words were falling on deaf ears. They finally pulled me out & a nurse ran in with Ativan. She injected my IV with so much that I felt like I was in vegetated state. I could hear & see everything but I could hardly move & barely speak. After I had no more fight in me they popped me back in. 

Thank God my MRI today went smoothly. She slid the needle right in and put a heated blanket on me. They always play my Pandora station of choice into comfy earphones and I guess how many songs it will take until it's over. Today it was sixteen :) The contrast always creeps me out but I think I’ve gotten used to it. Whenever they start the contrast it feels like you’ve urinated on yourself ha ha.

After my MRI I went right up stairs to see my favorite doctor-my neurosurgeon. My neurosurgeon is one of the kindest souls to walk this planet and it doesn’t hurt that he’s gorgeous. Alton has even admitted it. He jokes that he’s only keeping him around until I’m healed but it looks like I’m going to be seeing him once a year for the rest of his career or my life-whichever comes first. Sorry Alton the school girl crush will live on J

He was very happy with my MRI results. The remaining tumor has not grown in size or changed in shape; this is always good news! He said that it’s in his opinion that it may have even shrunk. Also the brain fluid collection has been reduced to half since March. There’s no telling if that will ever fully go away but my VP shunt is handling all the excess brain fluid pressure. The VP shunt runs from my head, around my ear, down my neck, under my collar bone and over my intestine. When I woke up from that surgery I woke up pretty much completely bald and I felt a pain right beneath my breasts.  When I looked under my gown, I saw a 4 inch incision stitched up. I was so confused but an IV drip of Dilaudid makes everything okay.

So the conclusion of my appointment was that things look great. I still have a lot of brain rehab to progress through but I remain hopeful. While there is a possibility that the remaining tumor can cause future medical conditions it’s not something that I’m going to dwell on. I’ll continue pushing through because that’s what I’ve learned to do.