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!

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!!


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 ( or Farris ( 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! :)

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.

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! :)

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!

Saturday, November 14, 2009

From the Diary of a Brain Tumor Chick

Saturday, November 14th 2009

I'm heading back over to the Mayo Clinic tomorrow for a week of even more tests before the big surgery on the 30th. I am just about two weeks out from the surgery and there couldn't be more on my mind.

Recently, it's been on my children. I have full faith that everything with the surgery is going to be a success and that this will be my new beginning of a life without a brain tumor named Egore. Having said that, you just don't get diagnosed with a larger than golf ball size brain tumor without thinking about your own mortality, even just a little. If I were to be completely honest...a lot. The first thing that comes to mind are my children.

Knowing that after this whole thing is said and done, these diary entries will become a record for them, for me, of this adversity that has been forced upon us, forced on our world, there are certain things I want them to know.

In our busy everyday lives while we're running around trying to get everything done, have I taught them what needed to be taught? Have I been the example I want so much to be? Have they learned from me what they will need to have a GREAT life?

So this part is directed to them...My mother gave me a card when I got married written to a daughter from a mother. Recently I found the son from a mother card and fell in love with it. It's her words mixed with mine but I could not believe in it and mean it more for my boys.

Did I tell you?
Now that you are growing up I look at our life and ask myself, Did I tell you?
Did I tell you all that I meant to tell you all that I felt was important.
Did I tell you or was it lost in the shuffle of our everyday lives.
The busy full days when I taught and didn't know it.
What did I teach?
Was it strong?
Was it Good?
Will it root you in something real that will allow you to grow with a firm and sound foundation?
Did I tell you...
Did I tell to LOVE, not with a fair weather love, but with a love that accepts and cherishes unconditionally with no judgements.
Love not with a quick and passing love, but with a love that is a quiet peace within your heart.
When things go wrong, and they will, get back to the simple things, the peaceful things and find that peaceful love again.
Did I tell you to be thoughtful.
Not to be a martyr or doormat to be trod upon, but to be aware of other people and their needs.
To meet others with awareness and within your own framework be able to meet them halfway and on occasion go the other half joyfully.
Did I tell you to be courteous, not to display empty manners with no meaning but to live the courtesy born of caring.
And to express this caring through the small formalities and customs born of the years.
Did I tell you to be bold.
To be not afraid of the unknown, but to live life to the fullest, with no regrets and meet each new experience with joy and anticipation.
And did I tell you to be cautious.
To temper your daring and sense of adventure with good judgement and consideration.
Did I tell you to serve other people if only in a small way.
There is growth and satisfaction in being part of something larger than yourself and your life will be richer for knowing this.
Did I tell you to maintain a sense of the past.
To recall and uphold all that is best and meaningful in our country and in our society.
But never be afraid to speak out where you don't believe or where there is room for improvement.
Work for what you believe, but work in a positive way within a structure of order and reason.
Did I tell you to find a part of nature that speaks to you.
Then know intimately and well.
For some it is a mountain peak.
For some, like your mother, a windswept beach.
Find your own and in it find your restoration.
Did I tell you laugh, to dance, to sing.
There is a lot in life that is hard, but take it as it comes and find the good...and make time to dance.
Did I tell you to be creative, to explore the seed within you.
Find your creative spirit and let it grow.
And did I tell you the challenge of being a man
the challenge of balancing your worlds
the need to achieve and the need to nurture
the need to be strong and the need to be tender
the need to meet the tests that life brings yet always yet always keep love at the center
letting it be the star by which you set your sail.
Did I tell you these things as we went along the way?
If I did I am humbly grateful.
If I did not then you must choose for yourself.
If it has meaning accept it and make it your own.
If it does not, discard it.
Your life is yours, and yours alone, to build as you choose.
And did I tell you...
I hope with all my hope that it will be a good life.
I've read this so many times in the last few weeks. There's so many things I wish I had said or not said, did or did not do, or simply let go. So many things that I regret, that I feared, that were silly.
Life is such a journey, and if nothing else, I am so grateful for the opportunity to re look at mine and where I want it to go and who I want to be, if I'm blessed enough to survive live on. 
My story isn't over, my journey isn't finished. I will love harder and stronger than ever and who I love will know it. I will choose what's best for me and my world, with no outside opinions needed. I will not worry what others think and whether or not it's the most popular decision.
I will live my life to the fullest, no regrets, no holding back. This is a promise from the Brain Tumor Chick to her Brain Tumor Head and to her beautiful boys!
I have a brain tumor...but it so does not have me!

Wednesday, November 11, 2009

From the Diary of a Brain Tumor Chick

Monday, November 2nd 2009

This was CRAZY day! We left for my first visit to the Mayo Clinic that day. It was one of the hardest in my life. I very rarely have left my oldest son overnight and had until this day never left my 2yr old overnight. My heart was aching. We had crazy amounts of running around to do. I was told by the Mayo Clinic to pack like they would go ahead and do the surgery right then just in case. So I had no idea for how long I was leaving my world for. I was on the verge of breaking down all day.

When it rains it pours. I had to get Brock (2yr old) an H1N1 flu shot so that if I did go ahead and have the surgery he would be able to come in to visit me when it was appropriate. (Mayo clinic rule) Bray and I already had ours. Bray's (9yr old) eardrum ruptured the night before so he also had to see the doctor. And if that wasn't enough, Robert broke a tooth over the weekend and had to have that repaired. And all that was just that morning!

I was fortunate enough to have my best friend from high school want to take some family portraits of us before we left and that was truly the highlight of the day! She and I were amazing friends back then and although life has kept us from seeing each other as much as we would like to when we are together it's as if no time has passed. It was so nice to have that done. She has become an incredible photographer and it was so generous of her to squeeze us in during our craziness! I had been on steroids for a while at this point, so my face was really puffy but I think she has a 'magic' camera because the shots turned out beautifully. They're all the one's you see on this blog! She rocks!

There was just the leaving part at that point. So tough. I made my dad and sister be brave for me and not cry because I just couldn't yet. I still had to be brave for my boys. We dropped them off and we were on our way to see about my brain tumor...Egore.

My oldest sister surprised me by driving all the way from Gray, GA to Jacksonville to see us that night. It was so awesome. She had just given birth to her second child, a little boy, about 5 weeks previously, and I had yet to see him. We chatted and giggled and played with her kids for about an hour and a half and they had to leave to drive back. Can you believe they drove all the way down there just to drive the four and a half hours back. CRAZY! I was so honored. I really do have AWESOME sisters.

The next few days were spent in Jacksonville seeing several doctors and actually looking at the films of what this BRAIN TUMOR looks like. I don't know that could have set in completely until I saw the films. How could I still be functioning with this thing that looked to take up a good 1/4 of my brain? The rest of my brain was completely compressed against the other side of the skull. Those pics were AWFUL! It made my stomach sick just to look at them!

It only reaffirmed what I had already been told...I have a brain tumor!

From the Diary of a Brain Tumor Chick

Tuesday, November 10th 2009

I received my upcoming Mayo Clinic schedule in the mail yesterday and in all honesty it made it all too real. You know there are times that I've actually forgotten all that I'm going through even if it's just moments. There is something about seeing it in black and white that brings it all back. I leave on Sunday. Have literally a butt-load of tests (I know horrible grammar, but hell I have a brain tumor. If you can't speak improperly now when can you :) that last from approximately 7am until around 5pm for 4 days straight. I should be sufficiently magnetized, radiated, drained of all blood and bodily fluids and blind from the intense lights of the visual fields tests when I finally leave to come home on Thursday. Oh and I'll also know everything there is to know about my heart. Which I'm sure those are all good things that they're doing but all it means to me right now is that much closer to taking half my skull off to dig this tumor out. And that to me is both the extremely scary part and the part I'm most anxious for. If that makes any since at all.

I'm anxious for it to all be done. To be in recovery and working towards getting back to life. I'm scared to death of the surgery, of waking up and somehow being impaired. Of not being able to get back to my normal life.

I guess it's just like everything else, a fear of the unknown. Of how things will turn out? Isn't that just life though. I can't think of one important event in my life that hasn't been the slightest bit scary. Maybe the fear keeps you on your toes :) Maybe the fear is healthy as long as you stay above it?! I am staying above it! I can't wait to go back to my nice, quiet, simple life! it makes me love my brain surgeon all the more.

and yes...i have a brain tumor!

Tuesday, November 10, 2009

From the Diary of a Brain Tumor Chick

Friday-Sunday October 30th-November 1st

The next few days are a blur. I had Halloween costumes to sew. Bray's Birthday to ready for. And my impending trip to Mayo clinic to get packed for. Back to life.

Coincidentally, I had a great friend from Middle School visit during this time and provided a much needed distraction to all my chaos. It was relaxing, easy and peaceful for the first time in what seemed like a long time. For a few hours out of my weekend I got to simply enjoy the company and have a blast catching up. I will have to say in my mind I kind of pretended I wasn't a brain tumor patient. It was wonderful. We went and saw my beloved ocean and felt the coolness of the white sand between my toes and the chilly salt water at my feet. It was what I needed. Anyone who knows me well knows what a love affair I have always had with the coast. It rejuvenates me it makes me whole. Sharing that with a wonderful friend is that much sweeter. I laughed, I played, I tripped and looked like a moron and it was all GREAT!

At some point over that weekend we told Bray (in a very kid like way). It was hard but he was a trooper and did good. He was visibly shaken and nervous but did as OK as a little boy can be finding out his mommy has a brain tumor. I know that in a lot of ways his secure world shut down a little that day.

My youngest sister came in to help. We had Birthday Parties for Bray. Which we managed to make as normal as possible. We trick or treated. And life went on just a little.

We had to face things we never thought of before. Wills, Medical Power of Attorney, things 30 year old should not have to think about. Robert and I had to have some very candid conversations. Conversations we had for obvious reasons not been prepared to have for quite some time. Conversations that made us both realize just how bad this thing could really be.

It was during this time that I learned to laugh about it, even a little. That I decided this evil thing needed a name...Egore (as suggest by Lindsey).

I cannot believe I have a brain tumor!

Sunday, November 8, 2009

From the Diary of a Brain Tumor Chick

Wednesday, October 28th 2009

This was my reality day. I woke up and knew I had to get going. I bit the bullet, I looked it up online. It scared the *&@% out of me, but I did it. I felt the need to know everything I could. What is that quote, "Knowledge is power" and I needed power. I researched all I could about the tumor, doctors, you name it. I even signed up for some online brain tumor support groups. (There's a sentence I never thought I'd say) I made phone calls to physicians, to my insurance company to my 'essentials', and to the mayo clinic until my phone battery simply went dead from exhaustion. (I wasn't far behind)

I made my first concession to Egore...I withdrew from one of my college courses, to try to help lighten the load and made the decision to keep my other two classes. (I have A's and they are hard won A's...I simply cannot give them up yet)

I made plans, made decisions...this very much helped my family. I think they all thought I had lost my mind sitting on the couch, watching my movies the day before :) Maybe I did, They were relieved and I was scared out of my mind, but scared into action at least.

Robert stayed home with me again. I still couldn't bear to be alone. I guess to him too...this was emergency enough.

I couldn't yet say the words out loud at this point. I didn't mind people knowing. I just couldn't say it myself. This is where I relied on my family and their vast networking skills, just so I didn't have to say it out loud. Not yet. I was still slightly in my my world and was not yet willing to leave it. My 'essentials' sheltered me, from reactions, from sadness, and from reality a little. They felt helpless, but they'll never know how much these simple acts meant at this time.

I have a brain tumor. My brain tumor, Egore, does not have me. Ironic as this sounds I can still not wrap my brain tumor filled brain around the fact that I, Francis Brock Spann, have a stinking brain tumor! Is this real?!

From the Diary of a Brain Tumor Chick

Thursday, October 29th 2009

Robert was suppose to go back to work today, but fittingly, I awoke experiencing one of my worst headaches yet. This time was once again different...this time I was pissed! Pissed that this thing thought it would slow me down and even more pissed that much to my was working. Not one medication of the plethora of drugs I have been prescribed would even touch it. Nothing even helped a little. This was the beginning of pain shots for me. That was a tough undertaking for me. Me, who doesn't even like taking minor medication, had to concede to this blasted tumor and allow them to inject whatever the heck they wanted to simply because the pain was making me crawl the walls.

It was a bad day. A day filled with too much pain both physically and emotionally. To top it off the pain shot only takes the edge off the physical pain and does nothing for the emotional.

They also started me on mega steroids. To Buff me Up. Just Kidding I wish. To reduce the inflammation of THE TUMOR IN MY BRAIN!

It's the first day I realize, I'm really sick and this is really happening!

I have a brain tumor!

Saturday, November 7, 2009

From the Diary of a Brain Tumor Chick

Tuesday, October 27th 2009-

I'm tired. I just got back from taking Bray to school. Brock and I are just settling into Playhouse Disney and a bowl of Honeycombs. It's a good morning. We had big plans to veg out and do some laundry.

The phone rings and it's an unknown caller. I NEVER answer unknown call, but today is different. From here on out it will always be different. It all comes back to that phone call.  It was my neurologist. "This is strange", I think to myself. She tells me she's received films from the previous day and wants to discuss them with me. She explains that she's on call for a few days and doesn't know when she'll get back to the office. She says that she thinks that because of my 'medical background' and the fact that I seemed to be a level headed girl, that I can handle it over the phone.

I'm nervous now.

At this point, I'm thinking, "How bad could it be"? The next thought is that "some thing's really wrong". I tell her to go ahead, that I'm fine. What else was I going to say? I already have an enormous knot in my stomach.  I can't wait days to find out what it is she's calling to say. I have to know.

The next few minutes go by very slowly. Lasting for what seems like an eternity. I am trying my hardest (unsuccessfully) to hold it together. I didn't want to disappoint her with my 'medical background' and all :) I'm holding Brock, standing in the kitchen, he is instinctively wanting to be held at the sight of my tears and suddenly I have a whole new reason to keep it together.

She tells me I have a very large tumor on the left side of my brain. Seriously...did she just say 'large tumor' and my 'brain' in the same sentence?!  Hence the tech's questions about that side. I fight back the urge to say, "Excuse me what". Most everything after runs together. She said that she thinks it's the type of tumor that is rarely cancerous and rarely grows fast, but...(there's always a but) she thinks I have the type that is now growing fast due to the sudden onset of symptoms. She has no idea whether that also means it is cancerous. She suggests that I see a Neurosurgeon. I really like my neurologist, she's a great doctor and in her defense they deal with these things everyday and most of us do not. All I can think is, " think?!".  

She asks if I'm OK. I can tell that at this point she's rethinking my LABOR AND DELIVERY position as enough 'medical experience' to be telling me this over the phone. I was rethinking it as well!

I thank her for her time and tell her which neurosurgeon I would like to see and assure her that I will call my husband if I need him. I hang up the phone and literally ask myself if this was a big enough emergency to call Robert to come home. He's not mean, nor cruel, just very old school. As silly as it sounds I wondered if he would think this is emergency enough. I'm not having brain surgery right now, surely this can wait. I soon venture back to reality (somewhat). I have a brain tumor...I, Francis Brock, have a brain tumor. This is emergency enough!

I this time I can no longer speak very well from sobbing. I say something to the effect of "Doctor called, I have a brain tumor, can you come home". He hears, "The dog died can you come home". You have to understand this is a dog we haven given to friends due to our son Bray's allergies. So he's thinking "what the heck...really...she's this upset over the dog". With the economy bad and everyone loosing jobs he's then wondering how he's going to find a nice way to tell me he cannot come home for the dog. After several tries on my part he finally understands that what I'm saying over and over is not that the dog died but that I HAVE A BRAIN TUMOR. I know it's impossible but I swear I can feel the blood drain from his face. I hear him choke down a sob and he says, "I'll be right there". I am relieved. I am independent and can hack doing most everything by myself...but this, I cannot handle on my own...not today. I look over at my baby (2 yrs old) who's watching mommy cry and all I can think of is, "how could this happen"?!

I cry and I cry and I think "surely there is something other than crying I need to be doing?" and I simply go back to the tears.  That's all I have in me that day.  All I can give.  I arrange for my mother-in-law to come get Brock for the day so that I can somehow fix this thing in my head before he gets back. There were not a lot of rational thoughts that day.   I arrange for Bray to go home with friends from school.  I think "today should be fun for him, he's loosing his mom soon, today should be a fun day".  I can't face anything today, not even them. I shut the door on life.  I wanted so badly to hit the pause button and slow this thing down.  How do I tell them? What do I tell them? Will they miss me? These are all questions that would simply have to wait for another day.

I call my family.  My mom, dad and my sisters.  I hated that.  Probably more than I hated finding out myself.  Mom was out of town at a location and I didn't know what to say.  I begged my sobbing father to call and tell her for me.  That I couldn't disappoint her like that.  I mean she had made me, housed me, in her tummy and I had gone and done this to my brain.  He said "Sis, I can't, I can't!  You have to, she'll want to hear from you...I'll call her after and make sure everything is ok".  Dang it, I didn't want to.  Everyone else held it together for the moments we were on the phone.  I was already directing people.  "The doctor called, it's not good news...I NEED you to hold it together.  Are you ready? I can't repeat it so please listen".  I couldn't hear any comfort they offered.  It was nil, in my mind.  No amount of "we will be this, Francis" could effect me that day.  

I have a brain tumor.  A Brain Tumor.  As in, a tumor in my brain.  

I watched movies for the entire rest of the day.  I didn't leave my couch for hardly anything.  I didn't make any calls.  Didn't check out any hospitals or doctors.  Nothing.  I was safe, on my couch, in my world.  All around me, from afar, my friends and family went into action mode. Each doing what they do best. Some researching, some planning, some making this blog (heck no I didn't make it) all crying, all trying to nudge me into reality, nudge me to get moving. I didn't work.  I couldn't see why they couldn't understand I had movies to catch up on.  I couldn't. Not that day. I could only watch my movies and think. I refused to look anything up online (I was scared). I didn't want to know how bad this could be. I wanted to be alone. Alone with the tumor I just found out had invaded my brain. I wanted to sink deeper and deeper into my world. My world is a nice place, with no brain tumor, life is simple there.

I wanted to go back to the moment of the tumor's first existence and change the outcome. Was I one, five, ten, or twenty two when the tumor named Egore came around? How could I not have known I had this horrible thing growing in my brain? The symptoms I had written down in my symptom journal and taken to the Neurologist with me make perfect sense now that I was honest with myself. The significant speech and memory issues. The horrible eye/head pain that I could no longer tolerate.

I wanted to change 'it'. What the 'it' was I didn't yet know. 'It' was simply the moment this tumor, named Egore, began. The moment that very first abnormal cell attached to my brain. I needed to know what and where 'it' happened. Because this simply could not be happening!

I have a brain tumor...this chick has a brain tumor!

From the Diary of a Brain Tumor Chick

Monday, October 26th 2009-

5.40 a.m. I'm leaving to go in for what my neurologist and I think are your 'run of the mill' tests that are just to make sure we are not looking at more than a 'weird' migraine. I'm not nervous. I, at that point, am absolutely sure the tests are going to be OK and negative for anything abnormal. Everyone else, though, is nervous. Looking back maybe I should have been too.

I had an MRI and MRA, during which the tech came in and started asking lots of questions about the left side of my head. Still not nervous, but it does peak my interest, unbelievably I'm still explaining it away in my mind. "She just sees my eardrum reconstruction that I had done to my left ear when I was 7". All doctors who have seen it say that it looks strange. "She just never seen an ear that looks like mine", my mind said.

9.30 a.m I'm home and other than a few calls to what I now call (lovingly) the essentials in my life, I really don't give the tests I just had done, much more thought.

Friday, November 6, 2009

Let's start at the Beginning.....

After a few months of getting really bad migraines that affected her vision, Francis made an appointment with a Neurologist. Within 3 days she had an appointment to get an MRI done and the day after that, Oct. 27th, our family woke up to bad news.

The Neurologist had found a Brain Tumor. Details? There weren't any. They thought it might not be cancerous, they thought it was about the size of a golf ball, etc.

Thankfully Francis was able to get an appointment at The Mayo Clinic in Jacksonville, FL very quickly. Tuesday, Nov. 3rd would be the day we all finally got some answers. After meeting with doctors on both Tuesday and Wednesday she met with her Neurosurgeon. He was both optimistic but cautious. He said the chance of the tumor NOT being cancerous is 95%. The tumor is bigger than a golf ball. It's also wrapped itself around some major blood vessels. Egore the Tumor is also sitting right on top of her "language center" and because of that, the surgery might have to be done while she is awake. Francis has to go back to The Mayo Clinic on November 17th for more tests and then the surgery will be November 30th.

How did Francis react to all of this news? Here is a direct quote off her facebook page....

" Major brain surgery...yucky, metal plates in your head...yucky, neuro icu after surgery...yucky, possibly having to be awake during major brain surgery...very yucky, a LONG and HAPPY life with my beautiful boys...PRICELESS and well worth it!"

We think the way she is dealing with this is nothing short of amazing. We were both able to spend some time with her this week and she is doing great. Better than us even. :) You won't find her crying or feeling sorry for herself. Instead you'll find Francis sewing Halloween costumes at midnight, snuggling with her boys and laughing with her husband.

We are at the beginning of a long hard road but we are all ready to go. Ready to get Egore the Tumor out of Francis' head and get her back healthy. We are all so grateful for the support and prayers that have already been sent our families way.

So what now? Well, we continue to pray and plan for the future. Francis and Robert thankfully have health insurance and the Mayo Clinic will accept it. But....brain surgery, even with insurance isn't going to be cheap. In addition to the huge hospital bill, there will be a ton of misc. expenses. Robert will have to miss alot of work and will have to stay in Jacksonville while Francis is in the hospital. Alot of you have asked how you can help and where you can donate. We will be having different fundraisers coming up. You can donate directly to an account set up in their name by clicking on the paypal link on the side of this blog or check back for upcoming dates and locations of fundraisers.

Again, we can't thank people enough for their support. It's been so nice to see how many people love our sister. Before Francis and Robert left for Jacksonville, one of her best friends Tori came and took photos of their family. We can't thank Tori enough for these beautiful photos. To see more photos and read her beautiful blog about Francis please click here.

Isn't this blog amazing? Well, it was created by our super talented family friend Lindsay (Horst) Nielson. Thank you again for such a great place to put updates about Francis.

Feel free to leave comments, I know that Francis will love reading them!

Love, Farris and Lois