Friday, January 1st 2010-
I can't believe I just typed 2010. It seems like just yesterday it was October. I can almost close my eyes and the last few months feel like a distant memory. Something that didn't really happen or happened in another life. It only takes a rub on my noggin' to realize there's no denying it. The large scar gives it away immediately. No denying that :)
Recovery has been tough. As I've said before, I'm not great at being patient. Just about the time I thought things were looking up (a little before Christmas) I slid back down the slope. My brain decided it was a good time to become inflamed and cause havoc. Multiple doctors visits and yet another round of antibiotics and steroids was enough to kill what little morale I had mustered up. But I am happy to report that it also soon passed and I once again began climbing that mountain of recovery.
I just had my one month check up in Jacksonville with my Neurosurgeon. I was nervous. I was finally going to get the final pathology report. I was going to find out whether this brain tumor, Egore, that invaded me also brought me cancer.
I had a list of questions to ask the doctor...mundane things like "When can I go back to the gym", "Which medications do I need to continue to take". No where on the list was 'Pathology report'. I completely forgot. It had consumed my thoughts so completely since I left the hospital and began recovery, I can't imagine how I didn't list it.
I diligently went down my list with Dr. Hanal. He looked at my incision. Pulled some stitches out that had not dissolved. Thanked him, even took a picture with him (for my record) and he began to walk out the door. My younger sister nudged me and mouthed the word "RESULTS?", like hello lady, and I quickly snapped back to reality. How could I forget that? It was what I most wanted to hear. I quickly asked and my wish, my prayers, and the prayers of so many others were answered. Dr. Hanal very casually turned and said, "Oh, completely benign". As casual as saying "I'll have cheese on that" or "No pickles please", he was confident and calm. He said it with surety that gave me such relief.
I was very aware of the fact that I was nervous and anxious about the results (obviously) but I had no idea how very much was weighing on that moment. I cannot express the amount of vast relief I immediately felt with just hearing those words. It's almost as if there was a shadow, a cloudy shadow following me around up until the point that those words were spoken. I wondered if for someone who gives news like this everyday, if Dr. Hanal could have any idea the power of what he was telling me. Everything, and I mean everything hinged on those results. In that very instant I can honestly say, I was a new woman. I felt like I had a whole new life.
After a few technicalities we left the Mayo Clinic. I reached the doors and the second I stepped out to the outdoors I screamed. Or maybe it was a yell. All I know is that it had to come out and it did. I think I may have scared the little valet man :) but I didn't care, it felt so good. I had confirmation, confirmation that I had a future! What a wonderful feeling that was and still is. It has yet to leave me. I hope it never does. I want to hang on to it for the rest of my very long life that I intend on having.
My news could not have come at a better time. Two days before a new year. I was only too glad to say goodbye to 2009 and hello to 2010. 2010, and every year after feels like a gift. It all could have been very different. It seems symbolic and right. It's not a gift that I have any intention to ever waste. Nor is it a gift that I will ever be able to accurately express to anyone who has not gone through something similar. I can't tell you how much I wish I could because it is so powerful.
I have to return to the Mayo Clinic (or the Mayo Spa as I've decided to call it...a clinic is somewhere you go when you are sick...and I am no longer sick :) every three months for an MRI for the next 2yrs. If there is no re-growth I will then move to every 6mos for 3yrs. If there is still no re-growth I will then move to once a year for the rest of my life. Daunting, to think that this will never 'really' go away. We will always be looking for Egore. The tumor is gone (I saw the pictures, they were beautiful) but tumor cells could remain. I already have to stop myself from thinking about the next MRI. Wondering if there will be growth. Wondering if I will ever have to endure another major brain surgery. It could easily consume me. I work each and everyday to not allow it to. It will take work, and getting used to but I am determined to hang onto the shear happiness I have now.
Things are progressing. I get more and more stamina everyday. Having my news I think makes me able to be a little more patient :) I actually played a little basketball with the boys today. I caught myself running after the ball, and it felt great. I didn't even find myself too winded and out of breath, which if you've seen me since the surgery you know that's an accomplishment itself :) I lost, but even that didn't matter. It was so fun.
Besides basketball we watched movies and football, wrestled and horseplayed, and I made dinner (black eyed peas, rice, turnips and cornbread) the traditional southern New Years dinner. It was an AWESOME day! An AMAZING day! One of the BEST days ever!
So here's to 2010! A year full of awesome, amazing, and best days! And most of all tumorless, Egore-less days!
Saturday, January 2, 2010
Saturday, December 19, 2009
From the Diary of a Brain Tumor Chick
Saturday, December 19th 2009
OK, OK so I know it's been too long since I last updated. I have been very negligent of my Egore Blog. I'm not going to lie, recovery has been much tougher than I ever imagined. Which may seem crazy to those of you reading this but very true for me.
There were times in this whole journey that I was very 'aware' of the reality of it all. The reality that I may not wake up OK, that I may not wake up at all. But I must admit that most of the time I chose an altered reality to live in. One that allowed me to believe that this was all very minor, that I was going in for some 'minor' surgery. My altered reality couldn't be farther from the truth.
I did OK the morning of surgery. No one else did. I was a rock. Solid, unmovable, unshakable. I'm not heartless, I did feel for those around me, but I would not allow myself to get caught up in the emotions. I was on a mission. I had a purpose. I wanted this. To be able to go back to normal. To a normal life. Free from all the medications I now consumed. Free from the pain. Free from the tumor named Egore.
The nurse came out to get me (in the surgical waiting room) and informed us (my family and I) that this is where we said goodbye. No one was expecting this and I swear I immediately heard a audible "oh" from everyone there. It was as if they were all socked in the stomach. For me though, it was good news. No TV worthy walks down the operating room hall following me on a stretcher with lots and lots of tears flowing. It would be quick and simple, my kind of farewell. I've never been a fan of long goodbyes.
In the back, I was able to regain my altered reality. I joked with nurses and doctors. As if we were there for a social meeting. They even forgot to give me my 'feel good medicine' before going to the OR so when I was 'wheeled off' to the OR I was immediately completely aware of my surroundings of my actual reality. I laid down on the OR table wrapped in warm comfortable blankets, still joking with all in the room and suddenly I looked up and they began putting me to sleep and for those few seconds before I went out my mind went there. To that place that made me question whether or not this would be the last time I saw the world. My last words were to my new friend and joking buddy the anesthesiologist. I said "Put me to sleep good, but please please I have to children who need me, MAKE SURE I WAKE UP!" He said simply "I promise". With that I gave in to the medicines that were tugging at my consciousness and quietly went to sleep.
He kept his promise...I woke up! Truth be told, he could have kept me asleep a little longer. Three or four days would have been OK! :) The pain was more than I could ever have imagined. The medicines didn't touch it, didn't come close. I told my family that I wanted everything documented with photos. I wanted a record of this journey, all of this journey. For the first few days I couldn't bring myself to look in a mirror. If I looked half as bad as I felt, I knew I looked rough. After seeing the photos long after leaving the hospital, it was a good call. :)
I semi-awoke (if you can call it that) to my family exclaiming "they got it all! they got it all! Dr. Hanal said it couldn't have gone better! Your fine". At that moment, had I been able to talk, I would have screamed "Are you crazy, do I look fine, do I seem fine" I thought they had all lost their minds! They were nuts because the state that I was in could not be deemed fine! :) Not to me at least.
As I further woke up to realize what they were saying it brought tremendous relief and the tears flowed. I had been told, pre-surgery, that because of it's location and the fact that it was intertwined with several arteries, it would be impossible to retrieve all of the tumor. The risks were too great. Risks of stroke, of mental impairment. Risks that at the age of 30 I was not willing accept. So they (the medical team) had decided they would get what they could and that would have to be enough. But my mind now exclaimed "they got it all". The only way I could have been more pleased was if my head hadn't felt like it had been chopped of and sewed back on :)
I spent 3 nights in ICU and only 1 night in a regular room and I was discharged! I got to go home. To embrace my beautiful boys tighter than I ever had before! Everything looked different. Life had changed. What moment it did, I couldn't tell you, but it changed forever. I only wanted to get better as fast as possible so that I could enjoy everything that I had in store.
Quick did not come as I would have liked. Again with my 'altered' reality. Things have been slow. I feel great, most of the time, but I don't have a lot of stamina yet. They tell me "it will come, just be patient". That's the one thing I really struggle with...patience. I'm learning though, constantly learning. And when I do gain some speed, watch out because I don't think anything will stop me!
I can't say enough thankyou's for the unbelievable amount of praying that you all did. It worked. I came through, I'm myself again and they performed miracles in that operating room! I know that there is no way for me to ever re-pay the kindness that has been shown on my behalf but I will spend my life paying it forward!
I'm coming through and will continue to share my journal entries with you. I go back to the Mayo on December 30th to find out the pathology results (whether or not it's cancer, though preliminary results indicate it's benign) and find out what's next in this journey.
I had a brain tumor named Egore ...but he has now been extracted!
OK, OK so I know it's been too long since I last updated. I have been very negligent of my Egore Blog. I'm not going to lie, recovery has been much tougher than I ever imagined. Which may seem crazy to those of you reading this but very true for me.
There were times in this whole journey that I was very 'aware' of the reality of it all. The reality that I may not wake up OK, that I may not wake up at all. But I must admit that most of the time I chose an altered reality to live in. One that allowed me to believe that this was all very minor, that I was going in for some 'minor' surgery. My altered reality couldn't be farther from the truth.
I did OK the morning of surgery. No one else did. I was a rock. Solid, unmovable, unshakable. I'm not heartless, I did feel for those around me, but I would not allow myself to get caught up in the emotions. I was on a mission. I had a purpose. I wanted this. To be able to go back to normal. To a normal life. Free from all the medications I now consumed. Free from the pain. Free from the tumor named Egore.
The nurse came out to get me (in the surgical waiting room) and informed us (my family and I) that this is where we said goodbye. No one was expecting this and I swear I immediately heard a audible "oh" from everyone there. It was as if they were all socked in the stomach. For me though, it was good news. No TV worthy walks down the operating room hall following me on a stretcher with lots and lots of tears flowing. It would be quick and simple, my kind of farewell. I've never been a fan of long goodbyes.
In the back, I was able to regain my altered reality. I joked with nurses and doctors. As if we were there for a social meeting. They even forgot to give me my 'feel good medicine' before going to the OR so when I was 'wheeled off' to the OR I was immediately completely aware of my surroundings of my actual reality. I laid down on the OR table wrapped in warm comfortable blankets, still joking with all in the room and suddenly I looked up and they began putting me to sleep and for those few seconds before I went out my mind went there. To that place that made me question whether or not this would be the last time I saw the world. My last words were to my new friend and joking buddy the anesthesiologist. I said "Put me to sleep good, but please please I have to children who need me, MAKE SURE I WAKE UP!" He said simply "I promise". With that I gave in to the medicines that were tugging at my consciousness and quietly went to sleep.
He kept his promise...I woke up! Truth be told, he could have kept me asleep a little longer. Three or four days would have been OK! :) The pain was more than I could ever have imagined. The medicines didn't touch it, didn't come close. I told my family that I wanted everything documented with photos. I wanted a record of this journey, all of this journey. For the first few days I couldn't bring myself to look in a mirror. If I looked half as bad as I felt, I knew I looked rough. After seeing the photos long after leaving the hospital, it was a good call. :)
I semi-awoke (if you can call it that) to my family exclaiming "they got it all! they got it all! Dr. Hanal said it couldn't have gone better! Your fine". At that moment, had I been able to talk, I would have screamed "Are you crazy, do I look fine, do I seem fine" I thought they had all lost their minds! They were nuts because the state that I was in could not be deemed fine! :) Not to me at least.
As I further woke up to realize what they were saying it brought tremendous relief and the tears flowed. I had been told, pre-surgery, that because of it's location and the fact that it was intertwined with several arteries, it would be impossible to retrieve all of the tumor. The risks were too great. Risks of stroke, of mental impairment. Risks that at the age of 30 I was not willing accept. So they (the medical team) had decided they would get what they could and that would have to be enough. But my mind now exclaimed "they got it all". The only way I could have been more pleased was if my head hadn't felt like it had been chopped of and sewed back on :)
I spent 3 nights in ICU and only 1 night in a regular room and I was discharged! I got to go home. To embrace my beautiful boys tighter than I ever had before! Everything looked different. Life had changed. What moment it did, I couldn't tell you, but it changed forever. I only wanted to get better as fast as possible so that I could enjoy everything that I had in store.
Quick did not come as I would have liked. Again with my 'altered' reality. Things have been slow. I feel great, most of the time, but I don't have a lot of stamina yet. They tell me "it will come, just be patient". That's the one thing I really struggle with...patience. I'm learning though, constantly learning. And when I do gain some speed, watch out because I don't think anything will stop me!
I can't say enough thankyou's for the unbelievable amount of praying that you all did. It worked. I came through, I'm myself again and they performed miracles in that operating room! I know that there is no way for me to ever re-pay the kindness that has been shown on my behalf but I will spend my life paying it forward!
I'm coming through and will continue to share my journal entries with you. I go back to the Mayo on December 30th to find out the pathology results (whether or not it's cancer, though preliminary results indicate it's benign) and find out what's next in this journey.
I had a brain tumor named Egore ...but he has now been extracted!
Wednesday, December 2, 2009
Francis Update
It just dawned on me (Lois) today that there might be people who aren't on Facebook that would like an update. Sorry about that.
Monday's surgery went very very well. She was able to be asleep during it! The doctor's told my parents that it could not have gone better. They removed all of Egore!!!! With most brain tumors, they are unable to get the entire tumor. We are so so happy about this. After she woke up from surgery she was in ALOT of pain, which I am sure is pretty normal. I cannot imagine my head hurting that badly. It took a little while to figure out what medicines work best with her also. Tuesday morning she was able to eat a little bit of grits and keep them down which was great. The rest of the day was filled with pain, pain and more pain. She had a good night Tuesday and today was able to sleep for 1 1/2 hrs straight Farris said. Which unfortunately is the longest she has slept in one sitting since surgery. Poor Frannie. She also ate a little more grits today. I forgot to mention that Tues and today she was able to walk down the hall a little bit with the Nurse and sit up in a chair for a few minutes. The last I heard this afternoon, she was supposed to be moved to a normal room as well, out of the ICU. We are really excited so far with her progress.
Again, I can't say thank you enough for the prayers that have been offered in my families behalf. I know that this is why she is doing so well. Thank you thank you thank you!!
FUNDRAISING NEWS:
My sister Farris and I are going to have an online craft auction soon to help with hospital expenses. If you would like to donate something, big or small, please let me (haleyuns@gmail.com) or Farris (couple_of_webbs@yahoo.com) know so that we can add it to the list and come up with a date to have the auction. If you don't craft but have something else to donate, we will take it too!! Also, you can be in ANY state and still donate something!! Thank you!!
Monday's surgery went very very well. She was able to be asleep during it! The doctor's told my parents that it could not have gone better. They removed all of Egore!!!! With most brain tumors, they are unable to get the entire tumor. We are so so happy about this. After she woke up from surgery she was in ALOT of pain, which I am sure is pretty normal. I cannot imagine my head hurting that badly. It took a little while to figure out what medicines work best with her also. Tuesday morning she was able to eat a little bit of grits and keep them down which was great. The rest of the day was filled with pain, pain and more pain. She had a good night Tuesday and today was able to sleep for 1 1/2 hrs straight Farris said. Which unfortunately is the longest she has slept in one sitting since surgery. Poor Frannie. She also ate a little more grits today. I forgot to mention that Tues and today she was able to walk down the hall a little bit with the Nurse and sit up in a chair for a few minutes. The last I heard this afternoon, she was supposed to be moved to a normal room as well, out of the ICU. We are really excited so far with her progress.
Again, I can't say thank you enough for the prayers that have been offered in my families behalf. I know that this is why she is doing so well. Thank you thank you thank you!!
FUNDRAISING NEWS:
My sister Farris and I are going to have an online craft auction soon to help with hospital expenses. If you would like to donate something, big or small, please let me (haleyuns@gmail.com) or Farris (couple_of_webbs@yahoo.com) know so that we can add it to the list and come up with a date to have the auction. If you don't craft but have something else to donate, we will take it too!! Also, you can be in ANY state and still donate something!! Thank you!!
Sunday, November 29, 2009
From the Diary of a Brain Tumor Chick
Sunday, November 29th 2009
It has felt like this day would never come. Even though it has only been a little over a month since diagnosis day, in lots of ways it has dragged since then.
I felt helpless. Unempowered to do anything but ride this brain tumor wave. My only option was to medicate the severe pain, try hold off the seizures and deal with the severe emotions of not being normal. It felt awful. I'm not a person who has to be in control all the time. I really enjoy flying by the seat of my pants, but in this last month there has been very few moments where I was in control of anything. My only request that I have demanded be followed is that my beautiful children not get sucked up into the details of all this. I am happy to know they have been spared the ugliness of my brain tumor named egore.
I have thought about this day in my mind over and over again. How scared and fragile I would be. How difficult it would be to even present myself to the world. How incredibly emotional I would feel. I really am shocked. I am anxious. I am nervous. But the pit in my stomach is very much smaller than I thought it would be. I am not going to lie. I have been a mess. A few days ago I was not fit to deal with much of anyone. All emotional strength was reserved for my beautiful boys and that was it.
I know feel energized. Ready for this to be over. Ready to be on the downhill of this hurdle. Or at the very least at the top (on the way down). I feel somewhat in control. The time has finally come that I can do something about this brain tumor and it feels good.
I'm quite sure that as they did on the day I was diagnosed my 'essentials' think I have lost touch with reality. That I am masking emotion on the inside. Surprise, surprise I'm not. I really am as good as I seem. Maybe all the emotions have been spent. All the anxiety gone. Maybe I have agonized over this situation enough for me and ten other people :)
I know for a fact that it has a lot to do with the vast amount of prayers in behalf of me and my family. I can't tell you how much I believe in the power of prayer and good thoughts. I have received so many and I'm hoping they continue as this battle to recover from egore begins.
I'm excited. I can't wait. Bring Recovery On!
I have a brain tumor...and it's coming out tomorrow! :)
It has felt like this day would never come. Even though it has only been a little over a month since diagnosis day, in lots of ways it has dragged since then.
I felt helpless. Unempowered to do anything but ride this brain tumor wave. My only option was to medicate the severe pain, try hold off the seizures and deal with the severe emotions of not being normal. It felt awful. I'm not a person who has to be in control all the time. I really enjoy flying by the seat of my pants, but in this last month there has been very few moments where I was in control of anything. My only request that I have demanded be followed is that my beautiful children not get sucked up into the details of all this. I am happy to know they have been spared the ugliness of my brain tumor named egore.
I have thought about this day in my mind over and over again. How scared and fragile I would be. How difficult it would be to even present myself to the world. How incredibly emotional I would feel. I really am shocked. I am anxious. I am nervous. But the pit in my stomach is very much smaller than I thought it would be. I am not going to lie. I have been a mess. A few days ago I was not fit to deal with much of anyone. All emotional strength was reserved for my beautiful boys and that was it.
I know feel energized. Ready for this to be over. Ready to be on the downhill of this hurdle. Or at the very least at the top (on the way down). I feel somewhat in control. The time has finally come that I can do something about this brain tumor and it feels good.
I'm quite sure that as they did on the day I was diagnosed my 'essentials' think I have lost touch with reality. That I am masking emotion on the inside. Surprise, surprise I'm not. I really am as good as I seem. Maybe all the emotions have been spent. All the anxiety gone. Maybe I have agonized over this situation enough for me and ten other people :)
I know for a fact that it has a lot to do with the vast amount of prayers in behalf of me and my family. I can't tell you how much I believe in the power of prayer and good thoughts. I have received so many and I'm hoping they continue as this battle to recover from egore begins.
I'm excited. I can't wait. Bring Recovery On!
I have a brain tumor...and it's coming out tomorrow! :)
Friday, November 27, 2009
From the Diary of a Brain Tumor Chick
Friday, November 27th 2009
One month. It's been one month since my personal D-Day (diagnosis day). I've been 'off' all day. Just not quite myself. Distant and Somber. Funny but I ended up doing the exact same thing I did on that day one month ago. I went and rented lots of movies and didn't leave my couch. I lost myself in entertainment and snuggling with the ones I love. It's kind of funny but I didn't realize that it was the anniversary of my D-Day until just now, long after I completed almost the exact same activities as I did one month prior.
I am the same in so many ways. Scared silly, withdrawn from the world, and again with the large knot in my stomach. I once again, like on that day one month ago, thought of my children and how hard I had to fight not only for myself but for them.
This time, unlike last month, I know what has to be done. I know what will be done, to rid my brain of this tumor named Egore. I don't know what's scarier knowing or the unknown. I sit here knowing that on Monday morning at 6.30am I will report to the Mayo Clinic Hospital for Brain Surgery. Words I never thought I would utter. But they are my new reality.
There are some things that have changed. I have an outlook. I have discovered in me not only the will to survive this but to live with this, and not only to live with it, but excel with it. Before D-Day I was happy with my life, I thought I had it good, and in all honesty I did. There's really not much I want to change, but there's a lot that has been changed for me. I am more determined now in all that I do. Things I knew I wanted out of life but had been too compliant to achieve them, too comfortable.
Comfort in my mind is a good thing, I love being comfortable, it is part of me. Now I must learn to step out of that box and be comfortable with change and the changes that occur in life. I so badly want this surgery over. I want to get on with life. Get on with what I want to accomplish. I want to go back to my wonderful safe world, full well knowing that I will never be able to, not in the same way. That world will forever be changed by this experience I will have to create a new safe world for myself and for my children.
I wonder if I'll ever forget that day...October 27th 2009. I doubt it. I wonder when I won't be drawn back to my couch for multiple movies to lose myself in my never ending thoughts. I wonder just how long it will be before this experience is a distant memory. A memory that got me motivated, awakened to all that the world had waiting for me. Although I do yearn for it to be a distant memory, I do not want to lose the lessons it has taught me along the way.
I hope that in time, long from now, my children will see my experience, read my words and gain strength from the fact that something so heartbreaking and earth shattering can be survived, can be overcome. That you don't have to be defined by these unfortunate circumstances, you need to rise above. You have to create your own normal, a new normal.
That is ultimately why I have written, why I have been so candid. My children are still so young to know the details of what I have been through, of what I will go through over these next few months. I want there to be record. A record of my trials. So that they might learn the strength needed in life to get through trials. Strength that it took a brain tumor for me to learn I had all this time.
Bray and Brock I love you dearly. You two boys are my world. You are what defines me. I am nothing without you. You will never fully comprehend the extent of my love for you as children rarely do until they have children of their own. I hope that through this experience I have displayed a sense of strength, a sense of courage, but also a sense of vulnerability that you will remember and take with through life.
I have a brain tumor and it will soon be gone and I will be thriving once more.
One month. It's been one month since my personal D-Day (diagnosis day). I've been 'off' all day. Just not quite myself. Distant and Somber. Funny but I ended up doing the exact same thing I did on that day one month ago. I went and rented lots of movies and didn't leave my couch. I lost myself in entertainment and snuggling with the ones I love. It's kind of funny but I didn't realize that it was the anniversary of my D-Day until just now, long after I completed almost the exact same activities as I did one month prior.
I am the same in so many ways. Scared silly, withdrawn from the world, and again with the large knot in my stomach. I once again, like on that day one month ago, thought of my children and how hard I had to fight not only for myself but for them.
This time, unlike last month, I know what has to be done. I know what will be done, to rid my brain of this tumor named Egore. I don't know what's scarier knowing or the unknown. I sit here knowing that on Monday morning at 6.30am I will report to the Mayo Clinic Hospital for Brain Surgery. Words I never thought I would utter. But they are my new reality.
There are some things that have changed. I have an outlook. I have discovered in me not only the will to survive this but to live with this, and not only to live with it, but excel with it. Before D-Day I was happy with my life, I thought I had it good, and in all honesty I did. There's really not much I want to change, but there's a lot that has been changed for me. I am more determined now in all that I do. Things I knew I wanted out of life but had been too compliant to achieve them, too comfortable.
Comfort in my mind is a good thing, I love being comfortable, it is part of me. Now I must learn to step out of that box and be comfortable with change and the changes that occur in life. I so badly want this surgery over. I want to get on with life. Get on with what I want to accomplish. I want to go back to my wonderful safe world, full well knowing that I will never be able to, not in the same way. That world will forever be changed by this experience I will have to create a new safe world for myself and for my children.
I wonder if I'll ever forget that day...October 27th 2009. I doubt it. I wonder when I won't be drawn back to my couch for multiple movies to lose myself in my never ending thoughts. I wonder just how long it will be before this experience is a distant memory. A memory that got me motivated, awakened to all that the world had waiting for me. Although I do yearn for it to be a distant memory, I do not want to lose the lessons it has taught me along the way.
I hope that in time, long from now, my children will see my experience, read my words and gain strength from the fact that something so heartbreaking and earth shattering can be survived, can be overcome. That you don't have to be defined by these unfortunate circumstances, you need to rise above. You have to create your own normal, a new normal.
That is ultimately why I have written, why I have been so candid. My children are still so young to know the details of what I have been through, of what I will go through over these next few months. I want there to be record. A record of my trials. So that they might learn the strength needed in life to get through trials. Strength that it took a brain tumor for me to learn I had all this time.
Bray and Brock I love you dearly. You two boys are my world. You are what defines me. I am nothing without you. You will never fully comprehend the extent of my love for you as children rarely do until they have children of their own. I hope that through this experience I have displayed a sense of strength, a sense of courage, but also a sense of vulnerability that you will remember and take with through life.
I have a brain tumor and it will soon be gone and I will be thriving once more.
Wednesday, November 25, 2009
From the Diary of a Brain Tumor Chick
Wednesday, November 25th 2009
For some reason, today, that fear that I talked so much about before, the one that never leaves, has crept back up to the surface. I tell myself that it is normal. Four days until surgery. I remind myself, nothing is normal anymore. I have a new normal that I have yet to settle into, one that I am rejecting as fiercely as I possibly can, with every fiber in my being. I am a brain tumor patient. I can say it now, but it still seems completely foreign. A figment of my nightmares. I could only wish to wake up tomorrow and realize that this has all been a bad dream. Unfortunately this is the reality that I've been dealt.
It's unreal in my mind that in just 4 days they will take off almost half of my skull off to dig out my brain tumor named Egore. I hate him, Egore, that is. I know it sounds strange but I have had a healthy amount of respect for this thing. I haven't wanted to harbor any hard or bad feelings, towards anything, not even the cause of my angst. I have changed my mind. I am allowing myself to hate him.
I hate it for making me face my own mortality. I fully intend to make a full and complete recovery from this thing but you can't help but contemplate the ugly alternative. I hate it for making me fear leaving my children when they are so very young. How would they fair without me? I don't want to miss their childhood. I relish in being a mother. It is my calling. It is my life.
As much as I fear, I am anxious. Anxious for it to be over. To be awake in recovery. To know that I made it through. Even more than that, to know I'm out of the woods. To hear the words, "it is not cancer, we're done, this is all we have to do". I long for that relief. To start my long haul to adjust to my new normal.
What amount of Egore will have to remain in my brain because of it's location? How dare it have the audacity to stay there! I keep having the horrible nightmares that I make it through but am somehow impaired. Sometimes physically, sometimes mentally, but impaired none the less. I have tried my best to push those awful images to the back of my mind. I'm not going to lie, those efforts are slowly getting harder and harder.
Tomorrow is Thanksgiving! How Thankful I am! Thankful for my tiny, itty bitty home that feels so comfortable. Thankful for my two beautiful, healthy children. Thankful for my family and the glorious support system they have provided. Thankful for the wonderful friends I have been fortunate enough to acquire over the years, especially those who have selflessly stepped up to the plate and not turned their head because this situation is both ugly and scary. Lord knows, if I could have run from it at times I would have :) I am not to the point that I can truthfully say I'm thankful for this situation, for Egore, and the opportunities it has given me but I can say I am thankful for awakening me and giving me a different and new outlook on life and what's really important to me. I am thankful for the perspective. For the ability to hug my children even harder, to rejoice in them. I'm thankful for the chance to wrong regrets, to right wrongs, and to decide what it is that I want to do with my life. I only pray that I'll be given the chance to act upon those chances.
I have a Brain Tumor...and I'm scared silly! :)
For some reason, today, that fear that I talked so much about before, the one that never leaves, has crept back up to the surface. I tell myself that it is normal. Four days until surgery. I remind myself, nothing is normal anymore. I have a new normal that I have yet to settle into, one that I am rejecting as fiercely as I possibly can, with every fiber in my being. I am a brain tumor patient. I can say it now, but it still seems completely foreign. A figment of my nightmares. I could only wish to wake up tomorrow and realize that this has all been a bad dream. Unfortunately this is the reality that I've been dealt.
It's unreal in my mind that in just 4 days they will take off almost half of my skull off to dig out my brain tumor named Egore. I hate him, Egore, that is. I know it sounds strange but I have had a healthy amount of respect for this thing. I haven't wanted to harbor any hard or bad feelings, towards anything, not even the cause of my angst. I have changed my mind. I am allowing myself to hate him.
I hate it for making me face my own mortality. I fully intend to make a full and complete recovery from this thing but you can't help but contemplate the ugly alternative. I hate it for making me fear leaving my children when they are so very young. How would they fair without me? I don't want to miss their childhood. I relish in being a mother. It is my calling. It is my life.
As much as I fear, I am anxious. Anxious for it to be over. To be awake in recovery. To know that I made it through. Even more than that, to know I'm out of the woods. To hear the words, "it is not cancer, we're done, this is all we have to do". I long for that relief. To start my long haul to adjust to my new normal.
What amount of Egore will have to remain in my brain because of it's location? How dare it have the audacity to stay there! I keep having the horrible nightmares that I make it through but am somehow impaired. Sometimes physically, sometimes mentally, but impaired none the less. I have tried my best to push those awful images to the back of my mind. I'm not going to lie, those efforts are slowly getting harder and harder.
Tomorrow is Thanksgiving! How Thankful I am! Thankful for my tiny, itty bitty home that feels so comfortable. Thankful for my two beautiful, healthy children. Thankful for my family and the glorious support system they have provided. Thankful for the wonderful friends I have been fortunate enough to acquire over the years, especially those who have selflessly stepped up to the plate and not turned their head because this situation is both ugly and scary. Lord knows, if I could have run from it at times I would have :) I am not to the point that I can truthfully say I'm thankful for this situation, for Egore, and the opportunities it has given me but I can say I am thankful for awakening me and giving me a different and new outlook on life and what's really important to me. I am thankful for the perspective. For the ability to hug my children even harder, to rejoice in them. I'm thankful for the chance to wrong regrets, to right wrongs, and to decide what it is that I want to do with my life. I only pray that I'll be given the chance to act upon those chances.
I have a Brain Tumor...and I'm scared silly! :)
Wednesday, November 18, 2009
From the Diary of a Brain Tumor Chick
Tuesday, November 17th 2009
You know...I was dreading this trip to Jacksonville and all the appointments that went along with it. In my mind, before I left, all that this trip equaled was getting me closer to having my brain operated on. So not a fun thought. I was terrified. I still am. The fact is the surgery is getting closer. But, (as I've said before there's always a but) this trip has been rejuvenating. I feel like I've found a bit of me again.
I knew the instant I was diagnosed with this brain tumor, named Egore, that my life would never be the same. I knew instantly how incredibly fragile my world really was and I haven't lost sight of that. It's something most 30 year olds don't have the opportunity to learn. I've been through a range of extreme emotions since Tuesday, October 27th. Most of which I have suffered privately with, but a few of you had the unfortunate opportunity to have been too much of a witness for.
I've been sad. I think that came first. Sad for myself. For my children and what this could possibly mean for them. I have shed more than my fair share of sad tears. I can say with all honesty that I have yet to ask "Why me" but I have done a good bit of "how did this happen". The sadness comes on instantly with no warning, usually while watching my children do something amazing. It engulfs me to the core. I feel my eyes moisten and my heart drops to the pit of my stomach and I am in those moments the epitome of sadness.
I've been scared. Fear is such a strong emotion. I'm pretty sure that sunk in next, or maybe even simultaneously. The fear does not come on suddenly. It lingers. It seems to stay tucked in deep inside. It never leaves, no matter what. It never goes away.
I've been emotional. UNBELIEVABLY full of emotions. Not necessarily the kind anyone (or at least me) wishes to have. I pride myself on living a simple life, devoid of all emotional drama. Now don't take that as devoid of all love or passion, I just prefer the simple version of those emotions. If emotions (the good kind) don't come easy, that in my book, means it's just not right. These emotions that I've have recently been acquainted to have made the independent chick that I have always been, very insecure.
Insecure about anything and everything. From making simple decisions to friendships and relationships. My world, my simple little world, that I love so much, has been ripped out from under me. All subconscious and conscious safety and security gone. On Tuesday, October 27th, all of that was taken with one phone call. My safety, my security, my ease. It left a shell of who I was sitting there. It stripped me of all that I knew. So, I guess, all things considered, it's understandable. It's not who I am or who I want to be...but understandable all the same.
I found that my mind was running all the time. There was constantly something that I was mulling over. From the day I was diagnosed, I have not stopped and been able to completely chill. To completely be me again. I've been distracted. Not by anyone or anything (other than my tumor) but everything that has had to be worked out, discussed, planned. It left me disgruntled and distant. I found myself being uber sensitive to everything and everyone else. I found myself wondering who this was because it simply wasn't me.
I didn't know how to get that back. In a lot of ways, I have discovered, I never really will. I will not ever live in my completely safe secure world again. I have been witness to the fragility of everything that I hold dear. In ways, that's a good thing. To never take things for granted, to be thankful for what you have, live everyday to the fullest, etc. But in other ways I have struggled to let go of this tumor named Egore, for even a moment and allow myself to be me, not crazy insecure me, just the crazy me :)
I really haven't ever been a traditional chick, I have seemed to always walk my own path and I have preferred it that way. In this trip, during the time I've had to give it some thought, I have realized, I don't want to be an extension of anyone or anything. I want to soar on my own in this life. With my love ones beside me, but I don't want to be carried. I don't want to fit into anybody's box (physically or metaphorically :) I have let go of a good portion of those insecurities and emotions that came with my brain tumor and have found me again. It feels good.
I've had fun. I went sightseeing on my time off from Dr.'s appointments. I did things the old me loved and in ways the old me finally merged with the new one. For hours at a time, my mind has not been running. I cannot change this tumor, named Egore. On November 30th they will try to remove as much as they can of it. But, the fact remains that there's a good chance part or all of it could be around for the rest of my life. It is a part of me now and I will always be battling him. But I am thankful to have the opportunity to LIVE with part or all of him. The other option, of not living, is simply unacceptable to me.
For the first time, I feel like maybe I have a leg up on this brain tumor, instead of it having me pinned down!
I have a brain tumor, and I'm learning to live with it!
You know...I was dreading this trip to Jacksonville and all the appointments that went along with it. In my mind, before I left, all that this trip equaled was getting me closer to having my brain operated on. So not a fun thought. I was terrified. I still am. The fact is the surgery is getting closer. But, (as I've said before there's always a but) this trip has been rejuvenating. I feel like I've found a bit of me again.
I knew the instant I was diagnosed with this brain tumor, named Egore, that my life would never be the same. I knew instantly how incredibly fragile my world really was and I haven't lost sight of that. It's something most 30 year olds don't have the opportunity to learn. I've been through a range of extreme emotions since Tuesday, October 27th. Most of which I have suffered privately with, but a few of you had the unfortunate opportunity to have been too much of a witness for.
I've been sad. I think that came first. Sad for myself. For my children and what this could possibly mean for them. I have shed more than my fair share of sad tears. I can say with all honesty that I have yet to ask "Why me" but I have done a good bit of "how did this happen". The sadness comes on instantly with no warning, usually while watching my children do something amazing. It engulfs me to the core. I feel my eyes moisten and my heart drops to the pit of my stomach and I am in those moments the epitome of sadness.
I've been scared. Fear is such a strong emotion. I'm pretty sure that sunk in next, or maybe even simultaneously. The fear does not come on suddenly. It lingers. It seems to stay tucked in deep inside. It never leaves, no matter what. It never goes away.
I've been emotional. UNBELIEVABLY full of emotions. Not necessarily the kind anyone (or at least me) wishes to have. I pride myself on living a simple life, devoid of all emotional drama. Now don't take that as devoid of all love or passion, I just prefer the simple version of those emotions. If emotions (the good kind) don't come easy, that in my book, means it's just not right. These emotions that I've have recently been acquainted to have made the independent chick that I have always been, very insecure.
Insecure about anything and everything. From making simple decisions to friendships and relationships. My world, my simple little world, that I love so much, has been ripped out from under me. All subconscious and conscious safety and security gone. On Tuesday, October 27th, all of that was taken with one phone call. My safety, my security, my ease. It left a shell of who I was sitting there. It stripped me of all that I knew. So, I guess, all things considered, it's understandable. It's not who I am or who I want to be...but understandable all the same.
I found that my mind was running all the time. There was constantly something that I was mulling over. From the day I was diagnosed, I have not stopped and been able to completely chill. To completely be me again. I've been distracted. Not by anyone or anything (other than my tumor) but everything that has had to be worked out, discussed, planned. It left me disgruntled and distant. I found myself being uber sensitive to everything and everyone else. I found myself wondering who this was because it simply wasn't me.
I didn't know how to get that back. In a lot of ways, I have discovered, I never really will. I will not ever live in my completely safe secure world again. I have been witness to the fragility of everything that I hold dear. In ways, that's a good thing. To never take things for granted, to be thankful for what you have, live everyday to the fullest, etc. But in other ways I have struggled to let go of this tumor named Egore, for even a moment and allow myself to be me, not crazy insecure me, just the crazy me :)
I really haven't ever been a traditional chick, I have seemed to always walk my own path and I have preferred it that way. In this trip, during the time I've had to give it some thought, I have realized, I don't want to be an extension of anyone or anything. I want to soar on my own in this life. With my love ones beside me, but I don't want to be carried. I don't want to fit into anybody's box (physically or metaphorically :) I have let go of a good portion of those insecurities and emotions that came with my brain tumor and have found me again. It feels good.
I've had fun. I went sightseeing on my time off from Dr.'s appointments. I did things the old me loved and in ways the old me finally merged with the new one. For hours at a time, my mind has not been running. I cannot change this tumor, named Egore. On November 30th they will try to remove as much as they can of it. But, the fact remains that there's a good chance part or all of it could be around for the rest of my life. It is a part of me now and I will always be battling him. But I am thankful to have the opportunity to LIVE with part or all of him. The other option, of not living, is simply unacceptable to me.
For the first time, I feel like maybe I have a leg up on this brain tumor, instead of it having me pinned down!
I have a brain tumor, and I'm learning to live with it!
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