Monday, September 22, 2014

Summer 2014, thank you for being good to me


Cheers to the summer of 2014. A couple nights before my first-two brain surgeries I sat on the porch writing in a custom journal I had made for Alton as an anniversary gift. The traditional gift for your first year of marriage anniversary is paper so I had a custom journal made for him with 365 reasons why I loved him. I wrote him a letter in that journal that night, just in case it was my last one to him. Tears streamed down my face with every word I wrote. It was after midnight and I sat there and reflected on everything. I thought to myself if God forbid something goes wrong what most would I regret. I had distanced myself from everyone for years. I would decline invites with friends and avoid family gatherings. That weighed heavy on my heart because my loved ones and family members were all gearing up to fight this medical battle with me. They were the ones that would call and who kept me in their constant prayers, they were the ones clearing their schedules to sit in a hospital lobby in the early hours of a Wednesday morning. I made a promise to myself that if God granted me a chance at a healthy abled life I would cease the opportunity to strengthen those neglected relationships. As you all know I am still here and I’m proud to say that this summer I have lived a grateful life.

My favorite place to be is my front porch and if you have sat there with me this summer please know that the memories we made are near and dear to my heart, for it’s the same place I vowed I’d change. Some of my favorite memories this summer are there. Watching the sun come up with my best friend and our husbands made me feel like I accomplished the promise I made to myself.

This summer I reconnected every meaningful relationship I neglected. I spent more time with my beautiful cousins, met up with childhood friends and made new ones along the way. Whether I was floating down and inner tube in Bishop or playing “never have I ever” with new friends around a fireplace, in a cabin, in Big Bear…I was living; not just existing. I pushed myself to not allow my condition to slow me down.
The night I turned 25 again ;)

My mom hosted a Disney Frozen birthday party for my twenty-eight year old sister and me. I know it sounds ridiculous to have a Disney Princess party for two adult young women but, it was great to be amongst our loved ones, blowing out our candles like we did as kids and opening birthday gifts in unison. My sister had a custom locket made for me. It has Olaf, the snowman from frozen on the front and inside it reads “some people are worth melting for” with a photo of us a toddlers.

Queen Elsa and Princess Anna
My birthday locket from my sister.
My summer ended with celebrating two of the most important people in my life; my better half and my momma. I tried desperately last week to get rid of the bug I caught. Bless my sister’s heart she tried to stay away from me but we were together for a whole weekend at the Women of Faith conference so I caught the tail end of what she was getting over. Friday morning I woke up drenched in sweat from a fever. I was so sick and Alton’s surprise party was getting closer. I sat in a cold bath, eating ice cream and downing water. With the help of my family, I pulled off his surprise party at Hangar 24. He has always wanted to go so I figured where better to celebrate his birthday. His cake was awesome and I was so happy with it. We spent Saturday evening in San Diego at our Aunt’s wedding. She looked so beautiful and it made me so happy to be a part of her special day. We retired early that night and drove home to celebrate my mom’s birthday the next morning.

Alton's birthday cake & his suprise party.
One of the perks of living in the inland empire is everything is an hour away. She said she wanted to eat by the beach so we had a beautiful Sunday brunch, overlooking the ocean. She seemed to enjoy herself and all of the birthday attention she was getting. My parents stayed and enjoyed themselves on the beach while we headed home. My mother deserves the world so seeing her happy makes me happy. We ended our summer over corn chowder soup and ice tea with our best friends.

Thank you loved ones for all the wonderful memories we shared this summer. 

My mom's birthday at Huntington Beach

 Now bring on the fall! 


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!


#BrainTumor

#BrainTumorThursday
#BrainTumorAwareness
#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.   



Tuesday, June 10, 2014

Because Sometimes we Fall

The day I learned to ride a bike I also learned a little about life. My sister is two years older than me and I always wanted her to think I was cool enough to hang out with. The day my parents agreed to take the training wheels off my bike I was ecstatic. I couldn't wait to be “cool enough” to keep up with Priscilla. My dad took the training wheels off and handed me my bike. Life isn't like the movies, he didn't put me on it and push me until I peddled on my own. There was no applaud as I peddled off into the sunset. It was a pretty straight forward transaction, he gave me my bike and told me to go ride it. I know it sounds harsh but I’m now thankful that my parents didn't coddle us; I feel it attributes to she and I being so independent. So I get on my bike and start to peddle, unsteadily but nonetheless peddling. I’m very cautious trying not to fall, going slowly and putting my feet on the ground more than the actual peddles. Finally I got the hang of it and I start to peddle on my own without having to stop. Priscilla’s standing there watching and I think to myself that I’m impressing her. She steps forward and pushes me off my bike. More startled than hurt my eyes start to tear up and she tells me “don’t start crying this is going to happen sometimes, sometimes you’re going to fall, get up and get over it and don’t cry.” She was right but not just about falling from the bike... sometimes we fall but there’s no point of staying down and crying…you've got to get up.

Last night I allowed self-doubt to get the best of me. I ended up in the guest room crying because I didn't want Alton to wake up to the sound of me crying. I’m not a crier, as a matter of fact no one in my family is. Crying has always been a sign of weakness in my beautiful dysfunctional family. I had my second appointment for rehab in the morning so before attempting to sleep I did my last at home exercise. I can only imagine how absolutely ridiculous I look while doing it. I have to put this post-it note with a letter B on it at eye-level and concentrate on it. For thirty seconds I move my head horizontally and then vertically all while concentrating on this damn letter. I was doing fine moving my head up and down but as soon as I moved from left to right my frustration grew. The letter disappeared from the paper, I could no longer see it. I stopped and concentrated on the post-it note and after what seemed like forever it re-appeared. That was enough for me to beat myself up over. My therapist said that after a few days my brain would get stronger and it would get easier but it was the contrary it was getting harder; to the point where this letter that’s written with permanent marker is disappearing on me. I keep telling myself to focus because it’s there and then all the negative self-talk floods in. I start to think to myself I’m not strong enough to control my brain or to rehabilitate it. My sister hears me start to cry and tries to say anything and everything to encourage me but her words are falling on deaf ears because I feel defeated by my circumstances. As quickly as I can, I go upstairs all while trying to keep my balance-I’m dizzy at this point. I didn't want to cry in front of her. I don’t cry in front of anyone.

I woke up this morning thinking about my sister and me as children and her staring down at me telling me to get back up. Today was a new day and I was determined to give it 110%.  We both got into the car and she drove me to my rehab appointment. My therapist hooked me into a harness and put me on this Balance Manager machine to asses my vestibular, somatosensory and visual systems. While on the machine if you lose your balance and step off the sensors or touch the walls it’s considered a “fall” on the assessment. The harness is there so that you don’t actually face plant on the floor. The test began and I struggled to keep my balance, the intensity increased and it got more difficult. My body is trembling as I'm trying to stand with my eyes closed, then the inevitable happened… I fell. Tears quickly streamed down my face out of frustration. I start to think to myself that this is ridiculous how hard can it be to stand still without falling? I lost control of my body, my balance, my coordination and not being in control is not something that sits well with me. I try not to sniffle so that the therapist and Priscilla don’t know that I’m crying. I ask to try it again and as soon as the machine is ready to defeat my balance again Priscilla says to me “Brianna don’t be afraid you've got this dude.” How she knew I was afraid without even seeing my face is beyond me so I concentrate and take her advice. The movement of the machine starts to intensify again and she tells me that I’m OK and reminds me not to be afraid. I fell twice more but with each fall it gave me more determination to rehabilitate my brain.

The therapist prints out my assessment and reviews it with us. The results aren't great but she assures me that I will improve. She took me into the physical therapy room and teaches me my new at home exercises. I lost my balance a few times and started to get anxious because there is no harness to catch me this time and I don’t want to end up on the floor. I look up at Priscilla who is watching me with a subtle smile and again I remember being on the floor by my pink bike and looking up at her from the cold concrete as she tells me “don’t start crying this is going to happen sometimes, sometimes you’re going to fall, get up and get over it and don’t cry.”

Thank you Priscilla. I'm not sure if you meant to bully me or teach me to rise when I fall but either way I'll take it as tough love.

It’s not how many times you fall down, it’s how many times you get back up.

 
L.A. Brain Tumor Walk 2013

Read my last blog post "You Can Call me Spinderella" about how how & why I'm going to rehab for my brain.

Wednesday, June 4, 2014

You Can Call me Spinderella


When I woke up this morning I had the same feeling I did as a kid when I was going to Disneyland. Today was my first day of Vestibular Rehabilitation or as I like to call it "Brain Rehab!" Amy Winehouse had it all wrong. "They tried to make me go to rehab" and I went! Well in her defense her rehab was totally different but I think we can all agree that she really did have it all wrong and perhaps she should have went...too soon? So long-story-short I had a little bit too much action (surgery) in the back of my brain, on the left side which led to me getting Vertigo.

Vertigo is the devil. I can't count how many times I fell or threw up for a couple of months. Finally, exhausted from the room constantly spinning I YouTubed my relief. YES, "YouTubed" and I was told today by my Physical Therapist that she was impressed that I had cured myself of Vertigo. So the room is no longer viciously spinning but I'm still constantly dizzy. Today's assessment at Loma Linda was conclusive with USC's findings. I have some fancy diagnoses for "your balance is off" and "the left side of your brain needs to be rehabilitated so that it's as strong as the right side." I just politely smiled because I already knew that. I made sure that they didn't have access to my records at USC so that they didn't just concur with my doctors notes. So I'm excited to say that I was told that in 12 weeks or less my brain will be rehabilitated and I can return to normal things like driving, running, laughing and last but not least CrossFit.

Where the Wild Things Are...In My Head


Okay so let me start by being completely honest: I don't know the first thing about blogging, I have far too much time on my hands (I'll get into that in a bit), my posts will be filled with grammar and punctuation errors (I have this awful habit of writing how I speak) and most importantly don't take anything I write too seriously-I don't. I guess you're supposed to have a topic that you blog about but I'm not exactly sure yet so let's just see where it goes.

When I refer to "recovery" I'm speaking about my recent brain surgeries; four to be exact. More about that later. The blogging idea came from my Sister. She suggested that I blog to pass the time while I recover. I just quizzically stared at her and out came "WHAT THE HELL AM I GOING TO BLOG ABOUT?" She raised her eyebrows and responded "I don't know you always have something to say...you're always talking." Gees thanks for calling me a loud mouth. So why not...here goes nothing.

A little about me...I guess if you don't know me personally the only word that I've been called that fits me perfectly is "unconventional". My former boss described me that way once and I just shrugged my shoulders and agreed. I'm not like most people. I'm more of an assortment of contradictions-if that makes any sense. For example I can pretty much talk to anybody, all while secretly having a panic attack. Most people tell me that I'm funny but I'm not...I'm just ridiculously honest and quick witted. Another misconception is that I'm outgoing, but truth be told, that's also not true. I prefer to be at home, on the porch, with my four dogs and reading random articles on my ipad. Hmmm what else... let's see I'm twenty-five years old, married and for the first time in my adult life, I feel like I finally have a clear perspective on life. I may not be where I'd like to be but I'm grateful for my obstacles. I'm not a religious person. I was raised in a Non-Denominational Christian church so my faith is Christian based. You'll see that throughout my blog but in no way, shape or form am I ever trying to preach at you. I have my beliefs and my recent experiences have strengthened my faith. I think that pretty much sums me and my new blog up.