Im still me but does anybody else realize it?!

I spent many sleepless nights in that ICU bed. The blood pressure cuff was driving me nuts. It going off every 2 or so hours and it was beginning to stick to my arm. The nurse was nice but she came in and did neuro checks every so many hours and gives me pain meds through the IV and then I would fall asleep for 2 hours or so. The sad thing is I lie awake looking forward to seeing her because she was my only friend until 6am when the doctors and students would come in and ask me to do things my body could not do. Have you ever told your body to truly do something and it would not listen? I have been evaluating myself for a few days now; as far as I could tell my cognitive process was still the same so why couldn’t I do a simple task such as lifting my arm. We study these things but when it happens, it is so surreal.  Would I be like this forever? Will people assume I intellectually challenged because I can’t speak or move my upper body? I looked forward to 6am because I knew I would see my dad turn the corner and pull up a chair and rub my hand with a tear in his eye and say he loves me. I think at that time only he and my sister Anna were the only ones in the building who truly knew I was in there…I was still me trying to get out.

STAT MRI

Doctors, residents, and nurses came in and out of my room to examine me. They went through the routine neuro check and blood draws but I couldn’t ever lift my arms to touch their hand.  I laid there action less but yet I was aware of everything that was going on around me. They took me down for a stat MRI and strap me to the bed and in the giant magnet I went. When I got back to my room all the responders were gone and my parents were waiting on me to get back. The nurses came in moments later and relieved us with the news of the MRI, it was not a stroke it was strong seizure and the good news was that my brain was clean. She explained there aren’t any visible traces at this time of a tumor but there will cells that line the brain that we cannot see (which makes since) but after all that drama I lost more mobility which would come back and I good report of the surgery…I will take that.

I don't want pity, I want my life back

Everybody walks by "hopes" your doing well. Even if they ask, you reply "I'm doing well thank you for asking" cuz you dont want let them in... I don't want pity; I want my life back but the matter of fact is my life will never be the same again, it went from full joy and laughter to late nights in the hospital and early mornings full of test and labs. I'm stunned that all this has happens since April. My dad asks me all the time what or how are you feeling. Is it trick question? Because I'm not sure if I am able to feel anything at all if; If do it's total frustration and anger though I have to hide. I have learned that humans are interesting. Although I originally didn't feel bad; all i had was a concern, no pain, no sickness but they keep digging till I feel pain or feel sickness. Is really necessary to tell about this pain or will they laugh in my face cuz I'm over-reacting but in the beginning I was under-reacting. It really makes me scared to honest with them... I feel terrible when I complain, there is somebody out there who is worse off than I am and is taking it better than me. I mean I am stage 2 of 4 I'm only half way bad...I don't even wana think about stage 4!!



- Sincerely Sarah's iPhone

Jake the Giraffe

It turns out that I had fallen asleep and my family went to the cafe to get dinner and coffee. When Maria saw that I was awake she came in and checked on me. When my family came back I was up for good. At first it was my aunt and my grandma. When they left my mom and my little sister, Anna, came in. Anna had her hands behind her back and she asked me what hand? I shrugged and she pulled out a baby giraffe stuffed animal (I'm obsessed with African animals ESP giraffes). I attempted to smile and act excited the best I could but I was starting to not feeling well. My mom set the head of my bed up and gave a cold rag. I signed to my sister that I feel like throwing up and she told my mom. My mom went out to tell the nurse and she came back. I signed it again and mom told shes coming. It not like my stomach was just upset... I was going to lose it but my mom didn't understand so I told Anna again and she started to look around for a basin. She was successful but there was something wrong. By the the nurse rushed in my body was going crazy and the crazy thing is I remember it. Most people say you don't remember things like this. There were several times that I thought it was a dream or I wished I was but I assure you, it wasn't. More of my right side was acting up. My face started twitching I had no control over my right eye though I did my left. It felt like my right side weighed 1000 lbs I could lift a finger literally. My blood pressure and heart rate was way off wack. Maria called a rapid response and asked my sister and my mom to wait out in the hall just for a min. She called my surgeon while other nurses was confirming vitals, doing Neuro checks and charting. When she got off the phone they wheeled to get and detailed MRI with other tests. Seriously? It couldn't be a stroke; could it?

Day 1

Day 1

Somehow, surgery seemed like a breeze but this not talk stuff was hard and post OP until now (I don’t know what time “now” was but I afternoonish) seemed like a life time. Once I was settled the nurses started to disappear but one remained, and would be the lucky nurse who pick the short straw; she was my one on one nurse in ICU. She was tucking me in when I saw my dad’s head and peeking inside the door and my mom was right behind him. The nurse turned around and introduced herself as Maria and explains what she go in report and explained to them that I couldn’t talk but I seem all there. She looked at me and asked if I knew who these people. I smile the best that I could and gave her thumbs up. She put her hands on my dad’s shoulder and asked me if this was my mom (the tests goes on) I gave her thumbs down and tried to sign dad but I don’t think it worked or she couldn’t read it. At this point who knows? She then put her other hand on my mom’s shoulder and said is this your mom? I smiled and gave her thumbs up.

Maria talked to us about some of the things in the room. She pointed to a camera straight in front me that was hanging from the ceiling. She told me if you hear people talking to you though that…you’re not crazy. She explained that it was a high tech camera. There were doctors who sit in a monitor room and observe behavior and they can check you pupils from that camera. I guess this special camera has saved so lives. If that was the case, it was ok with me. Even if that wasn’t the case I think it would be cool to have somebody to talk to at night. If I was a doctor I could have fun with this. Maria went on explaining other things but nothing as a cool as the camera. It was like the usual things, blood pressure, nuero checks, every hour, I could not have food or water until my swallow study the next day, and policy only allows 2 or 3 people in the room at a time and quiet hours were 7-8:30 am and pm so the visitors don’t interfere with bed side report. I HATED quiet hours!!  It was just time to lay there awake and think about what just happened and scared of what might come. The first day really wasn’t bad. I was in and out of sleep when there weren’t familiar faces popping in two or three at a time. A face that I distinctly remember was my sisters, Quirsten’s her husband was right by her side. Quirsten and I we are 14 months apart in age. My mom always dressed us like twins, one was purple and the other was pink.  We packed her apartment up so she could move up to Chicago with her now husband just before we found the tumor. Because she started a new nursing job up there she was not able to come home as often. I remember at that moment I wanted more than anything for everybody to just leave and her to sit and cry with me. I don’t remember what happened next. When I woke up there was nobody. I looked at the clock and couldn’t even register what time it was.

Quirsten and I dressed like twins... you cant see them but those are indeed skate on our feet ;) I was born for derby....maybe not

A Test after Brain Surgery!?!?!

I opened my eyes to the sound of somebody saying my name multiple times. When I looked up I saw a handsome young resident. He asked me a few questions. The first one was if I knew where I was. I said yea. He replied where? I opened my mouth and nothing would come out. He gave some options and I shook my head but even that was hard. I couldn’t coordinate my head to shake the right way. I am so glad he didn’t assume I was confused. Instead he kept asking me questions and I figured out a way to show him I was still me and I remember things. He went on asking me if I knew who I was and I gave him thumbs up with my lefts hand considering I favored that side. He then again gave me a few options and I gave him thumbs down until he got to my name and then I gave him thumbs up. He asked me a lot of questions. It turned out to be a multiple questions test or something. They didn’t tell me there would be a test after brain surgery. That is just cruel. They didn’t even give my time to study for it. It was a good thing the questions where like do know what years it is, the president, and if I’m in pain. It turns out I passed and the conclusion was that I was not confused.

When he left my bed side I had a chance to look around. I was in post op waiting for the neuro nurse to get report for me to go up to neuro ICU. I look around some more and I saw tubes, wires, and cords hooked to me. These tubes, wires, and cords would be my best friends for about a week whether I like them or not. At some point in time I fell back asleep and woke up in my room where they were about to transfer me to my “more comfortable bed”. That was a lie if I had ever heard one. All four nurses at once bombarded me. One was organizing the cords and wires hooked to me, one was scrubbing me in a bubbly tan soap, and one was doing who knows what? The fourth one I will never forget her but I don’t know her name. She was twitleing around at the foot of my bed doing assessment. She lifted my sheet to put on flow trons and her response was jaw dropping when she saw my bright pink cast. I don’t think she knew her response was so obvious but I chuckled inside. She threw the left leg flow tron on the chair beside the bed and said I guess you don’t need this one.

She Held My Hand Till I Fell Asleep

I wasn’t shaking but my right side of my face dropped. I remember several events though it’s not clear what order they happened in. They very well could have been happing at the same time. I heard the speech pathologists talking to me. She was telling me that I am ok and that I had a seizure. Again the voices above my head were talking away at a speed and language that I could not understand, but I didn’t care. What was on my mind is that I was beginning to feel pain. I went to tell the nurse that my left arm was hurting but I opened my mouth and nothing came out…that was the moment I realized I lost my speech. Dr Cohen previously told me this will likely happen because of the size and area the tumor was located. But still I thought I prepared myself the best I could for the situation but I come to realize you cannot prep yourself for this. A tear fell from my left eye as I felt the resident press on my head with a stapler to close my head up. I remember feeling 3 or 4 staple going in. My left arm was the only things hurting, the staples didn’t hurt but I felt the pressure and the sharpness by my ear. Another tear fell from my eye and the pathologist dabbed it away and held my hand till I fell asleep. 

Mapping My Brain and Surgery

When I woke up the second time not much had changed but I had potassium running through my IV and apparently they were getting access to my brain (removing a piece of bone). They gave me some kind of meds so I was EXTREMELY relaxed. I could have been the most wanted woman in the world but I wouldn’t have cared. I heard chitter chatter above my head but I couldn’t make out what they saying. I heard Dr. Cohen explaining something…I assume to one of his residence.  Dr. Cohen is a fantastic individual with a distinct voice. I can tell the difference between his voice and someone else’s voice from a mile away. It’s hard to explain; it’s kind and gentle but strong and confident. Anyway that’s where the counting began. If you have watched the video in my previous blog, you will see what I call and mini Taser gun. When the doctor touches the Taser to your brain your brain will stop working in that spot. (just watch the movie lol) Dr. Cohen told me I could start to count now. So I start counting and he touches my brain with the Taser if I lost my speech he would know not to cut there because it was my speech section of my brain. So the count, cutting, and Tasing went on for a while and he was done mapping my brain so just cutting the tumor was left to do. I was still there laying carelessly on the surgery table looking around trying not to distract the Doc. Though I really wanted to jump out of my skin and join him. I mean how many people could say they have seen or touched their own brain? I don’t know anybody do you? But that was not possible so the speech pathologist and I started to talk. She asked what do and I said I work at a preschool with special needs and at a hospital during the weekend while I finish up school. Then I heard the distinct voice shout over the sterile zone “over achiever” then everybody including I laughed. I said back to him….you’re the brain surgeon, and we laughed again. The speech pathologist asked me what kind of needs I have worked with. Fragile X, Shaking Baby Syndrome, Downs, Cerebral Palsy, Prenatal Stoke, Autism and the list goes on and on.  She asked what is your favorite to work with. I replied autism and shaken baby syndrome and I went on explaining those are the two I have seen most behavior from. I am fascinated with behaviors.  Another voice in the crowed asked why do you think autism has a high behavior rate….I said I don’t know but I would like to study it someday but I do know most of the time there is a language barrier. They are indeed smart kids. We doubt them too often. Most of the time they know what they want or need but can’t verbally tell us. That would make me frustrated to, on top of the sensory issues and the stimuli around them 24/7.  Dr Cohen then follows, “Sarah Tweed, you my favorite patient I have ever had.” Considering he was taking my filter out as we speak (the tumor, I was convinced, was my patience and my filter) and without a thought I asked him, “just wondering, do you say that to all of your patients?” He and the residence laughed and one voice stood out and said “NO! he sure doesn’t.” the room was silent for a few minutes. It was kind of awkward. Then Doc said the tumor was out and pieces of it were on the way to pathology and the other half I donated to IU Med Center. When they started closing the brain I was confused when Doc. told me to start counting as high as I could. I didn’t ask question I just did what I was told. I got to 8 and then I stopped. Doc asked if I know the next one. I said yes and then started over. This time I got in the 20 and stopped. I was having a seizure and I remember all of it….  

Some People

Some people were to watch, some were there to chart my behavior, some were there to put medicine in me, some were there to keep me comfortable, and some were there to the dirty work, but my main man was Dr. Cohen. He called the shots in the room and he was the single man I put my trust as he literally put his hands and pointed sharp thing at my brain. As you all know you brain controls about everything your body does, your breathing, your mobility, your speech, and considering your brain holds your memories and experiences and those factors make an individual who they are. Dr. Cohen had all my life and everything I am, 24 years of good memories and growing experiences in his hands. As I lay there amazed by the different things that are going on in O.R. I asked if the lady resident could shave my head. I knew she would understand how it was important to me that she did the minimal shaving. As was shaving my head people started asking about big hot pink cast on my leg. I assume it was to get my mind off things. So I told them the story and most of them thought it was cool so we made derby name to all the residence…the anesthesiologist came up with one for herself too. I was completely surprised how cool these people where. I actually had fun talking to the guys, but it didn’t take away the sound I was hearing in my head. They were putting at 6 point halo on me so I could not move my head during surgery. I don’t know why they called it halo because you don’t think of angels when you see this thing in action. They stabilize your head by literally screwing in long rod from different angles into your scull. I heard the bone when they screwed it in. While we were still talking about derby names Dr. Cohen made the cut of no return. I didn’t feel a sing thing except for when the blood started dripping in my ears. The anesthesiologist said I would be taking another nap….again it was a useless one.

The First Thing I Saw was My Enemy

I had a late MRI scheduled the night before the surgery. It was a special MRI to help the surgeon map my brain. The doc gave me a Valium the night before but I still did not sleep a wink; infarct it did the opposite. I was bouncing off the wall. Our hotel room was directly across the hospital helicopter launching pad I sat at the window playing Bejewled and watching the helicopter launch and return. What I was having done the following morning was an awake craniotomy. I could describe it but instead I have my surgeon doing the exact same procedure on a young manJ………. CLICK THIS

4:45am came tooooo quick. By 5:30 we were on our way to surgery perp where the 100 question began again. The speech pathologist came into my prep room and she held a book of notecards in her hand. She asked me to take my glasses off and she held up some cards and then asked if I could read. I replied what note cards? (I’m practically blind) I could not wear glasses because of the sterile zone so they made an exception, they let me wear contacts witch I have no idea why that made me so happy. The anesthesiologist and the speech pathologist took me back to the surgery room where I met my enemy for the first time.The first thing I saw was a huge screen computer with my MRI for the previously night on it. 

 I was blessed through my research and resources to find out Dr. Cohen-Godal was the best neurological surgeon in surrounding states. In the surgery room I watch the surgery team preparing: opening the tools that will be used on my head, arm extensions being put on the medal table, and IV bags out the butt. The anesthesiologist put a 18 gauge IV lind into my left arm and said you be taking a little nap. It was a useless nap because it seems a minute later they were waking me up. I was on the surgery table with an artery line in my wrist and another 18 gauge line into my other arm. There was a ton of people in the room, 10 residences to Dr Cohen, nurses, the anesthesiologist, speech pathologist, not counting the people I couldn't see…

Spelling and Grammar

•  I'm sorry to all who read my blogs. I haven't quite conquered spelling or grammar since surgery but I hope blogging will help

Sincerely,

 Sarah <3

They Wrote "YES" on the Left Side of My Head

     

My family and I were waiting in the waiting room. I remember saying to my mom, “if there’s nothing wrong we wouldn’t be here.” She did not a have response she knew I was right. The receptionist took us back to where doc was sitting waiting for us. I tried to smile as we said our hellos and I plopped myself up on the examination bed. The first thing she said was I called you guys here was in regard the MRI results early that day. Then she said “Sarah you have big tumor on your left frontal lobe and reaches your temporal lobe. I’m sorry.” She went on reading the report so some of question we had could be answered but most of them she could not answer. She said it's very important to head down to Indianapolis where she had previously schedule an appointment with neuro surgeon first thin the next morning. I was absolutely disgusted as I walked out of the doctor’s office crying. There were so many things running through my head. How long has this thing been inside of me? What about school? I have finals the next two week how in the world am supposed to focus now?!? My dad response was to forget that all this happened and concentrate on finals. ARE YOU SERIOUS!?!?!

     The next morning we headed to Indy to see the neuro surgeon. I was sitting on the table and I was very uneasy about the situation. The doctor knocked on the door and my heart stopped. He came in and introduced himself to my family and the endless questions began. Before I knew it I was getting prepped for surgery.

It was the start of never-ending questions

When I was in the emergency room the Doc ask if I hit my head. I told her no, I did not hit my head...I didn't even fall; I was still standing. She did not seem to believe me because she asked that same question 4 more time. My friend jumped in and told the persistent doctor that she was there and she didn't hit her head. Besides she ALWAYS wears a helmet,it's the league rules. The doctor left me alone after that.

I came out of surgery with 1 plate and 10 screws in my leg to hold it together. Three week later I started running a fever for several day. Back to the doctor I went. They checked for infection just in case but there was none. I followed up with our family doc; she gave me antibiotics for the fever. Before I left she asked me, "Did you hit your head when you broke your leg?" by this time I didn't know what to think. She and my mom began to talk and my mom told her sometimes I have slurred speech and other times I lose my speech completely for seconds. I told the doctor that this has been happening for about a year or more. I thought it was because I'm tired all the time. I work midnight on the weekends and days during the week on top of 5 classes. She knew our family background of seizures so she recommended an MRI and EEG just to be safe. I agreed to that.

The following week I set my MRI and EEG appointment for 7am so I could go to work that afternoon. The MRI was to be without contrast. The tech was so nice and calm as she set me up for the MRI. She explain what to expect and she headed out of the room. When she came back in her body language was totally different as she brought in a HUGE needle. She told me that she called my doctor and got an order contrast. 2 hours after the MRI my doctor called me and she told me that she needed to see my family and me today. My heart dropped to the bottom of my stomach. I still went to work that day. We headed to the doctor after my shift was over. 

The Start/End of Roller Derby

Joel is fantastic man. He would go out of his way for anybody. I work just over 40 hrs a week and I went to school full time, and he was juggling 6 classes, sick mom and a little sister. The time began harder to find to spend together. When I told him I was trying out for roller derby it became a touchy subject (rightfully so). Joel and I ended up going our own ways but we still keep touch. For the next month I would get off work at 5 and to the skating rink I went to train for derby tryouts, and to home to finish homework. My family was criticized me; "You have got to be kidding me; you broke your arm 2x on roller skates!" I thought that was 15 years ago. I have been rollerblading and I haven't had any trouble with that. The following week I met with the coach and he invited me to join the team. I was soooo happy.It was outlet of my frustrations and stress of my busy life... until my first scrimmage practice. I've have been an athlete ALL my life. I was state competitor in high school and broke a state record in weight lifting but no practice I have ever attended was harder than this. I remember looking at the clock and saying to myself only 30min left!! I CAN DO THIS!! The last drill I trying to block our quickest skater and she, of course, past me. The coach told me to wait for her next lap and wait for the other blockers to catch up so they could help me. I immediately put my brake on and heard a snap in my leg. I took my skates off and walked back to the bench. It didn't hurt but there was something moving inside of it. Come to find out I had a spiral fracture and 3 ripped ligaments...this meant surgery 

I met Joel a few summers ago when he was dating my best friend's twin. He was calm cool and collected. I remember it was getting dark when he and Brooke pulled up and walked on the court where Brit and I were playing basketball. My phone was playing Skillet and he commented that my music taste was superb. I began to get to know who he really was as the 4 of us were playing basketball. Brit and I watched them drive off late that night as we walked to my house.later that night I was sitting there awake thinking he was the nicest guy I have ever met; what is he thinking going for a somebody so careless like her. He needs to be with me. I think it was the "I eat catsup with catsup" shirt that got me. a long with is since of humor he has a huge heart and hard worker. Long story short Brooke broke up with him two times when and won the gold.
One evening he took me to the hospital where his mom has been for quite some time. She was diagnose with breast cancer 7 years and is holding strong with good faith; what would any other good single mom do? At this time she found out the cancer had spread to her brain and throughout her body. Shes the strongest person I know and still hold on... To Be Continued

- Sincerely Sarah's iPhone

The Beginning of the Beginning

I always considered myself active and adventurous. When I was 6 I had my life planned out , I was going to be in WNBA by winter and the first girl in NFL in the summer and fall. Eventually I realized life was going warped and shape us all by our experiences and dreams will change. I didn’t make into the NFL or WNBA but I played every sport I came across; some sports were a success (weightlifting and track) and some...not so much (golf).  After high school I triggered an interest to stand for kids with special needs. I worked Church camp taking care of them and providing best, experience I could for them. This experience was phenomenal and changed my life. In the fall I worked at non-profit company whose focus special need ages 6 weeks through adulthood; and of course school in the fall. 2 par time jobs and full time classes, my life was eventually boring to me, I need a little change. I prepared myself for a little adventure…well, I thought it was little but evidently God had something different mind.