It's been a while since I have written anything regarding my journey with Timmy the Tumor. And I will get to the update soon. But, my primary reason for writing this entry today is because the prognosis of what we (all those affected by this disease) have is grim. I have learned that very quickly in the past two days alone. For those that have been following me, you all know that I attend the Sontag Brain Tumor Support Groups monthly in Jacksonville, FL. Just yesterday, our support group family was informed that a wonderful woman who attended with us lost her battle to the brain tumor she fought for so long. And again this morning, I was made privy to the information that a good friend of mine, who also attends(ed) the meeting is now on hospice, unable to speak, left to communicate with her "expressive eyes and wonderfully telling facial expressions." She is and has been fighting the fight of her life against the terrible thing we call a brain tumor.
I cried hearing the news. Doctors have said there is nothing more they can do for her. My heart is broken and my prayers go out to her husband and her family. She is in her early 30's. That's what makes it so real. I am 28 years old. While I have been blessed throughout my journey, I know at any moment I could be facing the same ordeal. I don't tend to linger on the life expectancy...in fact more often I hold on to the stories of success, the stories of survival. And Lindsay, my friend who is at this point losing her battle with her brain tumor, was diagnosed with a GBM...and I, a Diffuse Astrocytoma Grade II. My understanding through research and questions is that a GBM is essentially a Grade IV of what I have. Few, if any, win the battle against a GBM. From the time I met Lindsay I knew she was a fighter. She had been diagnosed, surgery immediately followed and like me, had very little side effects from her initial surgery. She underwent chemo and radiation which I fortunately have not had to experience. She went back to work as an Elementary School music teacher (and I hear she is VERY talented).I think it was about six months later in another support meeting when I realized she was slower than she used to be, had to concentrate more on walking, and was losing use of her right hand. She was still in high spirits as she updated the group on her progress and set backs. The next month she was wheeled in to the group in a wheelchair by her husband and mother who had traveled in to town to help care for her while her husband worked. At this point, she was no longer working. That was just last month. And now, I get a call this morning that they have placed her on hospice. It's unbelievable how quickly things can go from good to bad to worse. In the blink of an eye, your whole life can change.
Thinking about that concept--how your life can change in the blink of an eye--on the way to work this morning, it made me realize how insignificant some things are...and yet how often we allow the insignificant things to control what we do, our mood, how we react. For instance, just yesterday morning I was complaining to a friend on the phone about the traffic I was sitting in on the way to work. We complain when it rains outside, we complain when it's too hot. We complain when things are not what or how we want them to be. Reality set in this morning...why do I/we complain over things we have no control over? Why can't I/we just be grateful for every second we breathe the gift of life? Be thankful for the rain for it gives life to everything we see around us? Be blessed by the sun when it shines and heats our skin by its very touch...even if its 110 degrees outside? These are God's creations! They are privileges to humanity, not a right. At any moment, they could be taken by our Creator. And I realized that when Sontag Foundation lost a God fearing woman Monday, and hearing/seeing the struggle in another God fearing woman today. DO NOT TAKE LIFE FOR GRANTED!
As for an update on myself. I had a one year scan in April. I sent my scans to Dr. Chandler (my surgeon who as since moved to Atlanta, GA to work with Peadmont Brain Tumor Center) who stated that everything looked good and we were clear to do another scan in 6 months. Then, Dr. Petr called (I had to have my scans ordered through him as he works at Lyerly Neurosurgery where Dr. Chandler used to work) suggested having a scan in 3 months instead of 6 months. After discussing with Dr. Petr, Dr. Chandler also agreed. Both stated that they did not see anything of grave concern, but it would be beneficial to follow up sooner than later and thus a 3 month scan would be better than a 6 month scan. It should be scheduled in July coming up. I am not too concerned as I know Dr. Chandler has always been up front and brutally honest with me. So I will update when that time comes.
Otherwise, life has been life at its finest. My sister had my niece in October right after I updated the last time I believe. Then of course we celebrated Thanksgiving and then Christmas and New Years. I left my previous job working at a Methadone Clinic, started working at a Private Inpatient Substance Abuse called Lakeview Health Systems and I was there for about 6 months when the opportunity of a life time presented itself. In a whirlwind of interviews (5 in 3 weeks), I was selected to be the next new member of Wounded Warrior Project as a WWP Talk Specialist! It's been a very exciting adventure and one I plan to be apart of for a very long, long.....long time. I am so honored and blessed to be apart of an amazing organization. I thank God daily for this opportunity and it just serves as another reminder of how great life is. It serves as another reminder to be truly thankful for the gift of life and to be able to give the gift of life to the warriors we serve.
I may not know what life has in store for Lindsay, for me, or for any other person fighting this battle...but what I do know is that Jesus knows. He has already written our life story and knows the ending. I just want to enjoy the pages.
God Bless Yvonne and Rest in Peace 6/10/13
God Bless Lindsay and may you be surrounded in peace for all of the rest of your days. We love you girl!
Thursday, June 13, 2013
Monday, October 8, 2012
One year ago
One year ago today I was in a car accident. What followed that car accident is a journey I will never forget. October 8, 2011 fell on a Saturday. I had just dropped off my geriatric kitty at the vet for some tests. I was heading to have breakfast with my Dad and driving through the intersection at Corona and A1A northbound when I looked down to grab my make-up bag...one one thousands, two one thousand...WHAM!! I did not even have time to brake, time to react. I t-boned the front end of a sports car, allegedly running a red light (according to the State Trooper who later wrote me a ticket). I was in the left lane of the northbound lane and ended up in the southbound lane facing the wrong way. I remember hitting him, I remember trying to move and get up while the car was still halting to a stop, I remember laying over my console, partially in my passenger seat trying to make sense of it all. I had just been in a car accident. I immediately opened the passenger door and pulled myself around to sit upright and at the moment I felt a warm liquid begin gushing down my face. I pushed my hand against my head and then a stranger forced a towel to my head placing pressure on the wound. I was conscious, I had remembered every thing. I did not black out. I was giving another stranger who stopped my Dad's phone number to call him and let him know I was in a car accident, but I was okay. He was less than two blocks away. The fire truck appeared, then the police and the ambulance. They were asking me questions...lots of questions. Then I saw my Dad...I held it together until then. I cried for a few seconds as all the adrenaline rushed through me and then I pulled myself together. What just happened?
I was transported to the hospital via ambulance. More questions were asked as the EMT took the information they needed, then we arrived at the emergency room. I was rolled in to a room and my vitals were taken yet again, IVs were put in to my arm and soon I would be transported to a room for a CAT scan to make sure there was no internal bleeding. X-rays were also taken of my ribs, my knee and my neck to determine any whiplash, broken bones, or collapsed lungs. 18 stitches were put in my forehead later. Slowly, my family started showing up and I was really concerned and wanted someone to contact my friends that I was supposed to meet for the Gator game later that day. Then the doctor came in....and she wanted to do a MRI of my head because she saw an area of concern that could be a contusion from the accident or something more. I was rolled in to a MRI and what seemed like an eternity later the doctor returned. I was surrounded my my Mom, Dad, Step Dad, and Anthony when the doctor said the "abnormality" was not a contusion and they wanted to send me to Downtown Baptist Hospital for further testing. They had reason to believe it was a mass, but they would need a special MRI to determine the next course of action. A mass? I didn't know what to think, I didn't know how to react. I felt the mood in the room drop...you could have cut the worry and concern with a knife. It was suffocating. I called my best friend, Abby and for the first time said it out loud, "They found an abnormality on my brain." I choked. My parents immediately began crying, my Dad grabbed me and squeezed me tight. I knew I had to hold it together, I knew I had to be strong.
Fast forward and the mass they found was a tumor...a brain tumor. A biopsy would follow and then surgery to remove the tumor. Being diagnosed with a life altering brain tumor would change my outlook on life forever.
So much has happened in the past year. I wouldn't even know where to begin but to THANK everyone that has been involved in my life in the past year. To the doctors with the steady hands, the co-workers who understood the time I had to take off for medical leave, to my faithful friends who never left my side through it all and gave me a listening ear and a shoulder to cry on when I needed it, to my boyfriend who could have walked away in a time of the unknown, to my family whose undying love helped see me through the hardest times of uncertainty, to everyone that prayed for me and over me and who continue to pray for lasting healing and to God, I thank you! Words can not express what the support has meant to me. I think about the accident almost every day...I deal with the flashbacks and sometimes the nightmares that plague me while I am driving or when I am sleeping. And then I quickly remember that those I surround myself with have been and will continue to be my backbone in this journey. I will speak my testimony to others and always believe I was given this journey very meticulously and purposefully by God. October 8, 2011 will forever be more than just the day I was in my car accident, more than just the day they discovered a brain tumor...I will celebrate today as a day I found new meaning in life.
I was transported to the hospital via ambulance. More questions were asked as the EMT took the information they needed, then we arrived at the emergency room. I was rolled in to a room and my vitals were taken yet again, IVs were put in to my arm and soon I would be transported to a room for a CAT scan to make sure there was no internal bleeding. X-rays were also taken of my ribs, my knee and my neck to determine any whiplash, broken bones, or collapsed lungs. 18 stitches were put in my forehead later. Slowly, my family started showing up and I was really concerned and wanted someone to contact my friends that I was supposed to meet for the Gator game later that day. Then the doctor came in....and she wanted to do a MRI of my head because she saw an area of concern that could be a contusion from the accident or something more. I was rolled in to a MRI and what seemed like an eternity later the doctor returned. I was surrounded my my Mom, Dad, Step Dad, and Anthony when the doctor said the "abnormality" was not a contusion and they wanted to send me to Downtown Baptist Hospital for further testing. They had reason to believe it was a mass, but they would need a special MRI to determine the next course of action. A mass? I didn't know what to think, I didn't know how to react. I felt the mood in the room drop...you could have cut the worry and concern with a knife. It was suffocating. I called my best friend, Abby and for the first time said it out loud, "They found an abnormality on my brain." I choked. My parents immediately began crying, my Dad grabbed me and squeezed me tight. I knew I had to hold it together, I knew I had to be strong.
Fast forward and the mass they found was a tumor...a brain tumor. A biopsy would follow and then surgery to remove the tumor. Being diagnosed with a life altering brain tumor would change my outlook on life forever.
Thursday, September 20, 2012
Finding peace within fear
Ladies and gentlemen,
For once, I actually do not know where to begin my blog. I will say this...the last 4 1/2 months have passed so quickly!! It's hard for me to believe that just that short time ago I had brain surgery. It's even harder for me to believe that I have only been back at work for 3 months. Not sure if that means time flies here, or it's really slow. :) Either way I am still happy to be back at work, back on the grind doing my usual routine. Things have been hella crazy at work, though and while all of the counselors and I could use a break, I know things will "slow down" soon...and by slow down, I mean be slightly more mangable.
In the last couple of months I have been doing cognitive therapy that Brooks Rehabilitation suggested following the nueropsych testing. I have been meeting with a counselor named Ashley and she is about my age which is awesome! She has been working on things like memory, task organization, slowing down in order to pay attention to detail, and learning my strengths and weaknesses in mult-tasking and through all of it has been very encouraging. In the beginning I was kinda put off by the results of the testing because their conclusion stated that I had a mild cognitive deficit. I was slower at tasks than a "normal" patient. And honestly, that made me feel dumb. I tried to never put much thought in to it, but a week or so later I told my Ashley how I felt about that label. I told her that I felt stupid with that diagnosis and I felt that it undermined all of my education I worked so hard to get, my bachelors and masters degree. I knew Ashely was not the one that gave me the diagnosis, and I knew in my heart that regardless of the the "mild cognitive deficit" that I was still the same person I was when I went in to surgery. I think my fear was being treated differently and not being bold enough to go back to school like I have always dreamed of doing. I mean, after having brain surgery, could I still be successful in school? Would I be able to understand and follow along just as flawlessly as I always had in the past? What about my job? Would I ever be able to move up in a chain of command? Or would they treat me like I am not capable? This all may sound petty or crazy, but those thoughts had crossed my mind. Ashley, though, assured me that I would be able to succeed in anything I put my mind to. She said that my diagnosis was really only a way of tracking my progress for the future...say...if I had another surgery down the line and needed to do cognitive therapy again; they would have a baseline next time. I finished cognitive therapy a few weeks ago now and have been doing well on my own. :)
After surgery I was also encouraged to attend Occupational Therapy and went for my initial appointment about 8 weeks after surgery (I was almost a month back in to working). The occupational therapist that assessed me determined I was doing well enough that I did not need further sessions and cleared me.
On another note, I looked in to attending a brain tumor support group becuase I thought it would be nice to be surrounded with peers who have experienced or are experiencing the same diagnosis. I attended the Brain Tumor Support group that is the 3rd Saturday of each month, hosted by The Sontag Foundation http://www.sontagfoundation.com/display.aspx?page=BrainTumorSupportGroup
I thoroughly enjoyed this group. It had young, old, and older patients. It had patients with all types of tumors and all grades. Some had reoccurring tumors. Some had incurable tumors. Some had tumors that were not treatable because they could not be reached to do surgery to even find out the type. But to me, all of them were survivors. All of them were inspiring. I believe I was the only person in the group that had a grade II. I also believe I was the only one in there that had a Diffuse Astrocytoma. But together we fight, and togther we stand united and pray for a cure one day!
Speaking of a cure, I found out my surgeon is leaving Jacksonville. I actually heard that from the support group the week before he called to tell me. I have made the decision to follow him, though, as he is only moving to Atlanta, GA. I figured that Atlanta was not too bad of a drive if I ever need to see him again. He will be working at the Peadmont Brain Tumor Center which upon researching it looks like a state of the art facility. I am really happy for Dr. Chandler, I know he will bring more awesomeness to Peadmont! I do have to continue my follow up MRIs every six months, but Dr. Chandler stated that I could have the MRIs done in Jacksonville and send them up to Atlanta, then do a phone session with him instead of driving up there every six months. I had the option of staying in Jacksonville and completing my follow ups with his replacement, but I feel more comfortable staying with Dr. Chandler as I already have a rapport with him. Brain surgery isn't just any surgery, it takes trusting your doctor very intimately to go through. That's why I chose to follow Chandler; if I ever had to do surgery in the future (and I pray that I don't) I would not want anyone else operating on me. He is the BEST!
I had my first follow up appointment with Dr. Chandler before he left on this past Monday, September 17. The appointment was a month earlier than I needed it but I wanted to see Dr. Chandler one more time before he set off on his new adventure. I completed an MRI Monday morning and then went directly over to Chandler's office to get the results. And according to the MRI, no tumor!! Like some of my friends and family say, "Timmy is too scared to come back." Or in the words of my Dad, "Tara's first scan since her brain tumor removal, reveals light in the spot that there was once darkness! Further proof darkness flees in the light of the MOST HIGH! Praise the Lord!" The plan is to continue to do scans every six months for the next 2-3 years to monitor growth. Dr. Chandler said even though he believes it won't come back any time soon, sometimes grade II tumors act like grade IV and sometimes grade IV tumors act like grade II. In other words, my tumor could come back sooner than expected or it could act like it should and not grow any time soon...or ever for that matter. They will use this scan to compare to all of the future ones to determine growth rate.
On a side note, while I was getting the MRI I had a lot of time to think about things. Naturally, I was thinking what it would be like if the scans were to show the tumor coming back. It reminded me of when I was first diagnosed and the sinking feeling I got that I had something that could potentially kill me. Those thoughts then reminded me of my journey to finding and growing stronger in my faith and belief in Jesus Christ. Knowing and having a relationship with Jesus Christ is what carried me through this ordeal and what has kept me strong throughout. I know, that no matter what God has in store for me, that I serve and have served a purpose in this world. I will continue to use my story as a testimony and will continue to share my story with others to build their strength and belief in God. What happened to me was no accident, and what will happen to me will continue to be part of God's plan. He has control and knowing that I am encouraged to let go of all that I am unable to control. And that gives me a lot of peace.
Until next time...
For once, I actually do not know where to begin my blog. I will say this...the last 4 1/2 months have passed so quickly!! It's hard for me to believe that just that short time ago I had brain surgery. It's even harder for me to believe that I have only been back at work for 3 months. Not sure if that means time flies here, or it's really slow. :) Either way I am still happy to be back at work, back on the grind doing my usual routine. Things have been hella crazy at work, though and while all of the counselors and I could use a break, I know things will "slow down" soon...and by slow down, I mean be slightly more mangable.
In the last couple of months I have been doing cognitive therapy that Brooks Rehabilitation suggested following the nueropsych testing. I have been meeting with a counselor named Ashley and she is about my age which is awesome! She has been working on things like memory, task organization, slowing down in order to pay attention to detail, and learning my strengths and weaknesses in mult-tasking and through all of it has been very encouraging. In the beginning I was kinda put off by the results of the testing because their conclusion stated that I had a mild cognitive deficit. I was slower at tasks than a "normal" patient. And honestly, that made me feel dumb. I tried to never put much thought in to it, but a week or so later I told my Ashley how I felt about that label. I told her that I felt stupid with that diagnosis and I felt that it undermined all of my education I worked so hard to get, my bachelors and masters degree. I knew Ashely was not the one that gave me the diagnosis, and I knew in my heart that regardless of the the "mild cognitive deficit" that I was still the same person I was when I went in to surgery. I think my fear was being treated differently and not being bold enough to go back to school like I have always dreamed of doing. I mean, after having brain surgery, could I still be successful in school? Would I be able to understand and follow along just as flawlessly as I always had in the past? What about my job? Would I ever be able to move up in a chain of command? Or would they treat me like I am not capable? This all may sound petty or crazy, but those thoughts had crossed my mind. Ashley, though, assured me that I would be able to succeed in anything I put my mind to. She said that my diagnosis was really only a way of tracking my progress for the future...say...if I had another surgery down the line and needed to do cognitive therapy again; they would have a baseline next time. I finished cognitive therapy a few weeks ago now and have been doing well on my own. :)
After surgery I was also encouraged to attend Occupational Therapy and went for my initial appointment about 8 weeks after surgery (I was almost a month back in to working). The occupational therapist that assessed me determined I was doing well enough that I did not need further sessions and cleared me.
On another note, I looked in to attending a brain tumor support group becuase I thought it would be nice to be surrounded with peers who have experienced or are experiencing the same diagnosis. I attended the Brain Tumor Support group that is the 3rd Saturday of each month, hosted by The Sontag Foundation http://www.sontagfoundation.com/display.aspx?page=BrainTumorSupportGroup
I thoroughly enjoyed this group. It had young, old, and older patients. It had patients with all types of tumors and all grades. Some had reoccurring tumors. Some had incurable tumors. Some had tumors that were not treatable because they could not be reached to do surgery to even find out the type. But to me, all of them were survivors. All of them were inspiring. I believe I was the only person in the group that had a grade II. I also believe I was the only one in there that had a Diffuse Astrocytoma. But together we fight, and togther we stand united and pray for a cure one day!
Speaking of a cure, I found out my surgeon is leaving Jacksonville. I actually heard that from the support group the week before he called to tell me. I have made the decision to follow him, though, as he is only moving to Atlanta, GA. I figured that Atlanta was not too bad of a drive if I ever need to see him again. He will be working at the Peadmont Brain Tumor Center which upon researching it looks like a state of the art facility. I am really happy for Dr. Chandler, I know he will bring more awesomeness to Peadmont! I do have to continue my follow up MRIs every six months, but Dr. Chandler stated that I could have the MRIs done in Jacksonville and send them up to Atlanta, then do a phone session with him instead of driving up there every six months. I had the option of staying in Jacksonville and completing my follow ups with his replacement, but I feel more comfortable staying with Dr. Chandler as I already have a rapport with him. Brain surgery isn't just any surgery, it takes trusting your doctor very intimately to go through. That's why I chose to follow Chandler; if I ever had to do surgery in the future (and I pray that I don't) I would not want anyone else operating on me. He is the BEST!
I had my first follow up appointment with Dr. Chandler before he left on this past Monday, September 17. The appointment was a month earlier than I needed it but I wanted to see Dr. Chandler one more time before he set off on his new adventure. I completed an MRI Monday morning and then went directly over to Chandler's office to get the results. And according to the MRI, no tumor!! Like some of my friends and family say, "Timmy is too scared to come back." Or in the words of my Dad, "Tara's first scan since her brain tumor removal, reveals light in the spot that there was once darkness! Further proof darkness flees in the light of the MOST HIGH! Praise the Lord!" The plan is to continue to do scans every six months for the next 2-3 years to monitor growth. Dr. Chandler said even though he believes it won't come back any time soon, sometimes grade II tumors act like grade IV and sometimes grade IV tumors act like grade II. In other words, my tumor could come back sooner than expected or it could act like it should and not grow any time soon...or ever for that matter. They will use this scan to compare to all of the future ones to determine growth rate.
On a side note, while I was getting the MRI I had a lot of time to think about things. Naturally, I was thinking what it would be like if the scans were to show the tumor coming back. It reminded me of when I was first diagnosed and the sinking feeling I got that I had something that could potentially kill me. Those thoughts then reminded me of my journey to finding and growing stronger in my faith and belief in Jesus Christ. Knowing and having a relationship with Jesus Christ is what carried me through this ordeal and what has kept me strong throughout. I know, that no matter what God has in store for me, that I serve and have served a purpose in this world. I will continue to use my story as a testimony and will continue to share my story with others to build their strength and belief in God. What happened to me was no accident, and what will happen to me will continue to be part of God's plan. He has control and knowing that I am encouraged to let go of all that I am unable to control. And that gives me a lot of peace.
Until next time...
Wednesday, May 30, 2012
Life carries on...gracefully
DISCLAIMER: Do NOT scroll all the way down if you do not want to see pictures of my brain. I have posted two pictures, one of my brain and one of the tumor. Enjoy!
Hey everyone!
Hey everyone!
So, I had my follow up appointment with Dr. Chandler, my surgeon, Friday May 11th, just two weeks after surgery. He saw me and was almost dumbfounded at how well I was doing. He even told me and my parents that he fully expected me to still be in a wheelchair when I came in for the appointment. He was pumped that I recovered so quickly, but still needed to send me to Brooks Rehab to get checked out with the possibility of having to do some neuropsych testing so they can clear me to go back to work and a driving test so they could clear me to drive again. My doctor and his assistant, Rose, were awesome and they were able to set the appointment up for Monday; I just knew I would be returning to work soon.
That Monday came (and went) and I met with a neuropsychologist at Brooks Rehabilitation--he gave me great news and not so good, but not terrible news. He cleared me to drive but I couldn't return to work just yet. Before surgery the doctors were preparing me that I could be unable to drive for 3-6 months...it has been 4 weeks as of 3 days ago that I had my brain surgery. Pretty remarkable if you ask me. To go back to work I would have to return to Brooks for another appointment and complete extensive neuropsych tests. The doc said he did not feel comfortable sending me back to a "high stress environment." I may have been unable to go back to work, but I was free to drive! So, naturally I went out that evening and bought a car. :)
The following week I was scheduled for the 6 HOURS of testing. That was wretched! I completed a pschological evaluation and then a battery of tests lasting 5 hours that included memory, word association, problem solving, executive functioning, and language. My brain was literally hurting by the time I left. The results of the testing came back that Thursday. I learned some things new about myself and was informed of things I already knew about myself. As expected, my speed in almost all the activities was slowed, specifcally if I was using my right hand (as the left side of the brain controls the right side of the body and that is where the tumor was present). Other areas that were slower than the average person were problem solving and any activitiy that had to do with math. I found out that "Damage to the left parietal lobe can result in what is called "Gerstmann's Syndrome." It includes right-left confusion, difficulty with writing (agraphia) and difficulty with mathematics (acalculia). It can also produce disorders of language (aphasia) and the inability to perceive objects normally (agnosia)." This all makes sense!! It is everything I have been dealing with for the most part and VERY fortunately for me, I have had minor issues regarding these side effects which leads my doctor to believe that I could have had this tumor for a very long time. So now they recommend additional therapy to improve any deficit which will begin next week and last approximately 4-6 weeks.
This pic is of the tumor which actual size is about an 1x1 inch
That Monday came (and went) and I met with a neuropsychologist at Brooks Rehabilitation--he gave me great news and not so good, but not terrible news. He cleared me to drive but I couldn't return to work just yet. Before surgery the doctors were preparing me that I could be unable to drive for 3-6 months...it has been 4 weeks as of 3 days ago that I had my brain surgery. Pretty remarkable if you ask me. To go back to work I would have to return to Brooks for another appointment and complete extensive neuropsych tests. The doc said he did not feel comfortable sending me back to a "high stress environment." I may have been unable to go back to work, but I was free to drive! So, naturally I went out that evening and bought a car. :)
The following week I was scheduled for the 6 HOURS of testing. That was wretched! I completed a pschological evaluation and then a battery of tests lasting 5 hours that included memory, word association, problem solving, executive functioning, and language. My brain was literally hurting by the time I left. The results of the testing came back that Thursday. I learned some things new about myself and was informed of things I already knew about myself. As expected, my speed in almost all the activities was slowed, specifcally if I was using my right hand (as the left side of the brain controls the right side of the body and that is where the tumor was present). Other areas that were slower than the average person were problem solving and any activitiy that had to do with math. I found out that "Damage to the left parietal lobe can result in what is called "Gerstmann's Syndrome." It includes right-left confusion, difficulty with writing (agraphia) and difficulty with mathematics (acalculia). It can also produce disorders of language (aphasia) and the inability to perceive objects normally (agnosia)." This all makes sense!! It is everything I have been dealing with for the most part and VERY fortunately for me, I have had minor issues regarding these side effects which leads my doctor to believe that I could have had this tumor for a very long time. So now they recommend additional therapy to improve any deficit which will begin next week and last approximately 4-6 weeks.
Fast forward to the present, I am back at work!!! I am so happy to be working and though a lot of people would never say that, I look at it this way: I am blessed to be able to work because I am alive. I am blessed that I can still function normally and am still able to make a difference in the lives of my clients. I may get tired at times, but I am not dead. I have nothing but happiness and love and gratefulness in my heart. The journey has just begun, though. My battle is far from over; my battle is merely stagnant at this point. Dr. Chandler said that he was able to remove 100% of the mass, but keep in mind that what I have is a disease. Keep in mind that although "These tumors have also been referred to as "benign" gliomas, this is a misnomer. [And] although they have a more favorable prognosis than glioblastomas (GBMs), [Low-grade Gliomas] are only occasionally associated with prolonged (>10 years) survival and, over their course, frequently develop characteristics similar to more aggressive brain tumors." So while the "life expectancy (which according to Dr. Chandler is an average of 8 yrs)" is still the same as it was before surgery, my prognosis is greater because of how successful the resection was. On that note, Dr. Chandler insisted that I just "live life" and when the time comes to do so such as in times when making huge life decisions then remember and take in to consideration my brain disease. No problem, I thought. Live life he said...Ha!! As if I wouldn't do that any way :) Until next blog...
This picture is of my brain...obviously
Tuesday, May 8, 2012
Post surgery...and still kickin'
So, it has been almost two weeks since I had brain surgery. Two weeks Thursday to be exact. And as you might be able to gather from me writing this blog...it went remarkably well. I went in for surgery at 5:30am April 26, 2012 and was released from the hospital around 4pm April 28, 2012 to finish my recovery at home. I was up walking the hallways of the ICU the day after surgery, and was moved to a regular room the second night. The day of surgery I was wiggling my toes, lifting my arms and legs, and showing good signs of strength on my right side...the side that is supposed to have been affected most by the surgery.
As some might imagine or have personal experience with, you don't get much rest while laid up in a hospital bed so when I got home all I did was sleep for the first couple days. Some days were better than others...some most certainly more painful than others. Medications helped take the edge off my skull hurting as much as it did for a bit, but I tried my hardest to only take Tylenol when I could stand it because the medications made me zombie like. I stopped taking all medications last Thursday night (well other than my seizure meds like I have to take).
As for effects stemming from surgery, there have been several. Everything, though, has been better than expected from the beginning. First and foremost, my depth sensation is out of whack and if you don't know what that means...imagine opening your fridge and hitting yourself in the face with the door because you dont realize how close in proximity it really is, haha!! Imagine also reaching for the bathroom faucet and missing it entirely only to hit your hand on the back wall or mirror...both happen to me still at times. I had a lot of coordination issues in the the first week also, difficulty typing, texting, writing, sometimes understanding too. All of which has improved as time goes on and as I continue to practice my fine motor skills...and all of which still need tuning up before I am back to "normal".
I have my post op appointment with Dr. Chandler, my surgeon, on Friday and I cant wait to find out what else I will have to do before I can return to work and most of all driving. I feel confident that I will be back to a normal routine far before anyone expected and look forward to moving on with my life. I did find out a couple days after surgery that as of right now I will not need any further treatment...no chemotherapy, no radiation, just follow ups in a few months!! They got all of the tumor they could get and the results showed only stage II throughout which is great news! God truly had his hand in this!
This is a shorter blog than my others mainly because it is taking me forever to type it (like two hours) and I am getting tired, but know that I feel truly blessed with how far I have come in such a short period of time. I am also truly thankful for everyone who has supported me through this journey. I will write in more detail in the coming weeks about everything so stay tuned! :)
Wednesday, April 25, 2012
The Night Before Surgery
To all my friends and family
And even those six degrees separated
I need you to hear me out
So even if it's boring, listen up
No matter what happens in my journey
You need to live like it never happened
And Live like every day is your last
Remember the moments in your life
Cherish the time you spend together
Laugh
Cry
Laugh until you cry
Make Mistakes
Fall in love...more than once
Don't have regrets
Stop over analyzing ways you could have made something better
Accept you did your best
And if you didn't do your best, do it over again...but not the same way
You see, not all experiences allow you a second glance, a new perspective
So live it this way the first time.
Give more to others without expecting something back
Don't change for others; be extraordinary
Eat lots of food and make sure they are all your favorites
Pick up a new hobby, try knitting...who cares!?
Don't judge others
Listen more than you talk (a task I am still trying to master)
Spend your money to the last dollar because you can't take it with you anyway
Take LOTS of pictures to forever capture the memories
Drive...drive fast....but drive safely
Do something daring...like jumping out of a perfectly good airplane
Travel to foreign places
Love and care for animals
Sleep with your baby blanket as an adult (remember, don't judge)
Play in the rain and watch a lightning storm (not necessarily at the same time)
Work really hard, but do it because it makes you happy
Not because it makes you money
Volunteer your time for anything
Go to church, get saved
Listen to music, all kinds...and LOUDLY
Dance in your car
Sing in the shower (the acoustics in my shower always made me sound better anyway)
Cradle a new born baby
Learn something new every day
Cherish every breath because you don't know when it will be your last
Live with your best girl friend for at least a year and drink lots of wine
Take a girls trip to New York...or California...or Key West
Go camping in the woods, and in the mountains
Try surfing
Join a sport team with your Dad
Go to concerts with your sister and buy her shirts so she will remember the night forever
Share a glass of wine and childhood memories with your Mom
Watch stupid YouTube videos with your friends
Forgive others...and then, forgive yourself
Be lazy
Cuddle on the couch with your significant other
Don't leave the house or hang up the phone without saying I love you
Don't assume that they just know...say it!
Look at the stars, then go to a remote place where it is pitch black on the side of a mountain and look at the stars again
Say Thank you...and mean it
Be Humble
Accept help
Pray
It's all these things, and so much more, that cross my mind before a big surgery like this. The scary part isn't the surgery, it's the unknown. But what I do know and what I will forever live by is this:
If God brought me to it, then He will bring me through it.
Goodnight and God Bless!! See you on the other side (of surgery you crazy people...)
And even those six degrees separated
I need you to hear me out
So even if it's boring, listen up
No matter what happens in my journey
You need to live like it never happened
And Live like every day is your last
Remember the moments in your life
Cherish the time you spend together
Laugh
Cry
Laugh until you cry
Make Mistakes
Fall in love...more than once
Don't have regrets
Stop over analyzing ways you could have made something better
Accept you did your best
And if you didn't do your best, do it over again...but not the same way
You see, not all experiences allow you a second glance, a new perspective
So live it this way the first time.
Give more to others without expecting something back
Don't change for others; be extraordinary
Eat lots of food and make sure they are all your favorites
Pick up a new hobby, try knitting...who cares!?
Don't judge others
Listen more than you talk (a task I am still trying to master)
Spend your money to the last dollar because you can't take it with you anyway
Take LOTS of pictures to forever capture the memories
Drive...drive fast....but drive safely
Do something daring...like jumping out of a perfectly good airplane
Travel to foreign places
Love and care for animals
Sleep with your baby blanket as an adult (remember, don't judge)
Play in the rain and watch a lightning storm (not necessarily at the same time)
Work really hard, but do it because it makes you happy
Not because it makes you money
Volunteer your time for anything
Go to church, get saved
Listen to music, all kinds...and LOUDLY
Dance in your car
Sing in the shower (the acoustics in my shower always made me sound better anyway)
Cradle a new born baby
Learn something new every day
Cherish every breath because you don't know when it will be your last
Live with your best girl friend for at least a year and drink lots of wine
Take a girls trip to New York...or California...or Key West
Go camping in the woods, and in the mountains
Try surfing
Join a sport team with your Dad
Go to concerts with your sister and buy her shirts so she will remember the night forever
Share a glass of wine and childhood memories with your Mom
Watch stupid YouTube videos with your friends
Forgive others...and then, forgive yourself
Be lazy
Cuddle on the couch with your significant other
Don't leave the house or hang up the phone without saying I love you
Don't assume that they just know...say it!
Look at the stars, then go to a remote place where it is pitch black on the side of a mountain and look at the stars again
Say Thank you...and mean it
Be Humble
Accept help
Pray
It's all these things, and so much more, that cross my mind before a big surgery like this. The scary part isn't the surgery, it's the unknown. But what I do know and what I will forever live by is this:
If God brought me to it, then He will bring me through it.
Goodnight and God Bless!! See you on the other side (of surgery you crazy people...)
Thursday, April 12, 2012
What I am getting ready to face
Stop what you are doing and close your eyes...
Chances are where ever you are, whether at your desk, on the couch with your computer, or on your phone reading this, if you closed your eyes you could reach out and touch an object...knowing exactly where to put your hand, where your hand is going and what you are touching. For example, right now I am sitting at my desk in front of my computer. If I closed my eyes I know that I could put my hand out and grab my coffee cup because I know that it is to the left of me, by my phone which I could also grab without questioning what I am doing. Sounds simple, right?
Well, that task may not be so simple for me following my surgery April 26, 2012. When I met with my doctor yesterday to discuss details of what to expect following surgery, he warned me that my sensory perception very well could be completely out of whack. He gave an example stating, "You could wake up and not be able to move your left arm. Not because you are paralyzed, but because you don't know that is your left arm. Your brain isn't making that connection." I could also face issues with walking, physically having to think about where my foot is going and making sure it is going in front of me, or if I touched something hot I may not be able to tell myself hey that's hot, move your hand stupid. Annnnd I pretty much need to expect to not be able to drive anywhere for 3 to 6 months following surgery. Bummer. All of the stuff I am describing though is rehabilitative, which is good obviously, it will just take time. Best case scenario: I rehab fairly quickly and go home with a cane or a walker and continue outpaitent rehab at Brooks. Worst case scenario: I do not rehab as quickly as they would like while I'm in the hospital and a spend a week to a month in inpatient rehab at Brooks. Dr. Chandler did mention that there is a slight chance that I could wake up with no symptoms or deficits. If I have had this tumor since I was a child, my brain already developed around it causing other parts of my brain to take up the slack for which that part of the brain controls and functions. If that is the case, then when they remove it I will be just like I am now. If the tumor has only grown in the last couple of years, then the brain has already developed and removing it will cause the deficits we are expecting. We won't know for sure what will happen until it happens...which has always been my motto throughout this process. I inevitably must go with the flow and there is no sense in worrying about something if it hasn't happened yet.
They will have to shave around the incision. Dr. Chandler plans on cutting an incision big enough for two reasons. 1.) to expose enough of the surrounding part of the brain so that they can monitor it with electrode things and make sure they don't cause more damage than they want to and 2.) because the likelihood of me having another surgery 5 or 10 years from now is high and they have to go in through the same incision and they have to make it big enough so they can reach the tumor that has regrown (which generally grows within centimeteres to inches of the first one). My doctor did say he tries to cut or shave as little as possible which means I will probably have a 1inch strip of hair missing that may be the length of 6 inches or more and in the shape of a wide U around the left side of my head. I'm fairly certain, though, that with my hair cut I got today I should be able to cover it or hide it well when it's all said and done. If not, then I'll shave the other side and make a mohawk out of the whole thing! :) Juuuust kidding...I could never...I would shave it all before I did that craziness and then rock some awesome scarves or something classy.
The surgery should take a few hours. I am to be at the hospital by 5:30am and should go back into the surgery around 7:30am but with all the set up and computer stuff they have to do first, the actual surgery won't begin until around 9:30am or 10:00am. Dr. Chandler believes I should be out and awake by lunch time. It took longer than expected last time when I had the biopsy, but maybe he will be right this time. Regardless of how long or how short it will be I trust and know that they will do everything they can to remove as much of "Timmy" as possible and I will be safe in their hands. I also know that God will be with me in the operating room holding my hand the whole time, stroking my hair and will have his hands in my surgeon's hands as he removes the mass.
It's two weeks away to the day and people keep asking me how I am doing. My parents said it best yesterday in the doctors office...they are more nervous than I. The surgery isn't what I am worried about, my biggest concern lies with what we don't know and what we won't know until I wake up from surgery and that is just what kind of deficits and challenges are to come. I am just ready for this all to be done and over with. I am not exactly looking foward to having to rely on people to get me around town to rehab appointments or feel like they have to watch my every move when I am in my own home, but I am grateful to have the support I do. It's going to be difficult to accept help from anyone because I have always been so independent. But I know with every challenge that comes my way I will put my all into overcoming them. This will not defeat me...what has defeated me thus far? Nothing...and nothing ever will.
Chances are where ever you are, whether at your desk, on the couch with your computer, or on your phone reading this, if you closed your eyes you could reach out and touch an object...knowing exactly where to put your hand, where your hand is going and what you are touching. For example, right now I am sitting at my desk in front of my computer. If I closed my eyes I know that I could put my hand out and grab my coffee cup because I know that it is to the left of me, by my phone which I could also grab without questioning what I am doing. Sounds simple, right?
Well, that task may not be so simple for me following my surgery April 26, 2012. When I met with my doctor yesterday to discuss details of what to expect following surgery, he warned me that my sensory perception very well could be completely out of whack. He gave an example stating, "You could wake up and not be able to move your left arm. Not because you are paralyzed, but because you don't know that is your left arm. Your brain isn't making that connection." I could also face issues with walking, physically having to think about where my foot is going and making sure it is going in front of me, or if I touched something hot I may not be able to tell myself hey that's hot, move your hand stupid. Annnnd I pretty much need to expect to not be able to drive anywhere for 3 to 6 months following surgery. Bummer. All of the stuff I am describing though is rehabilitative, which is good obviously, it will just take time. Best case scenario: I rehab fairly quickly and go home with a cane or a walker and continue outpaitent rehab at Brooks. Worst case scenario: I do not rehab as quickly as they would like while I'm in the hospital and a spend a week to a month in inpatient rehab at Brooks. Dr. Chandler did mention that there is a slight chance that I could wake up with no symptoms or deficits. If I have had this tumor since I was a child, my brain already developed around it causing other parts of my brain to take up the slack for which that part of the brain controls and functions. If that is the case, then when they remove it I will be just like I am now. If the tumor has only grown in the last couple of years, then the brain has already developed and removing it will cause the deficits we are expecting. We won't know for sure what will happen until it happens...which has always been my motto throughout this process. I inevitably must go with the flow and there is no sense in worrying about something if it hasn't happened yet.
They will have to shave around the incision. Dr. Chandler plans on cutting an incision big enough for two reasons. 1.) to expose enough of the surrounding part of the brain so that they can monitor it with electrode things and make sure they don't cause more damage than they want to and 2.) because the likelihood of me having another surgery 5 or 10 years from now is high and they have to go in through the same incision and they have to make it big enough so they can reach the tumor that has regrown (which generally grows within centimeteres to inches of the first one). My doctor did say he tries to cut or shave as little as possible which means I will probably have a 1inch strip of hair missing that may be the length of 6 inches or more and in the shape of a wide U around the left side of my head. I'm fairly certain, though, that with my hair cut I got today I should be able to cover it or hide it well when it's all said and done. If not, then I'll shave the other side and make a mohawk out of the whole thing! :) Juuuust kidding...I could never...I would shave it all before I did that craziness and then rock some awesome scarves or something classy.
The surgery should take a few hours. I am to be at the hospital by 5:30am and should go back into the surgery around 7:30am but with all the set up and computer stuff they have to do first, the actual surgery won't begin until around 9:30am or 10:00am. Dr. Chandler believes I should be out and awake by lunch time. It took longer than expected last time when I had the biopsy, but maybe he will be right this time. Regardless of how long or how short it will be I trust and know that they will do everything they can to remove as much of "Timmy" as possible and I will be safe in their hands. I also know that God will be with me in the operating room holding my hand the whole time, stroking my hair and will have his hands in my surgeon's hands as he removes the mass.
It's two weeks away to the day and people keep asking me how I am doing. My parents said it best yesterday in the doctors office...they are more nervous than I. The surgery isn't what I am worried about, my biggest concern lies with what we don't know and what we won't know until I wake up from surgery and that is just what kind of deficits and challenges are to come. I am just ready for this all to be done and over with. I am not exactly looking foward to having to rely on people to get me around town to rehab appointments or feel like they have to watch my every move when I am in my own home, but I am grateful to have the support I do. It's going to be difficult to accept help from anyone because I have always been so independent. But I know with every challenge that comes my way I will put my all into overcoming them. This will not defeat me...what has defeated me thus far? Nothing...and nothing ever will.
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