My Brain Egore

My little but really sort of big answer :)....long long over due! Forgive me?

2011-09-26T16:51:00.000-05:00

When I last left you there was so much hanging in the air. I know I've been a horrible 'blogger updater gal' but I have to say, the past few months are the first months in almost two years that I feel I have actually LIVED. That my body was not just merely 'here' but productive and useful. So I've run it ragged with excitement! Last we chatted my 'dawn' had arrived and we had some answers...key word being 'some'. :)

My appointments at the Mayo for 'My answer', aka the 18+ neck/thyroid tumors...could not have gone anymore different than I imagined. I felt as though I was handing them a gift. We, my doctors at the Mayo and I, had been working on figuring this horrible neck pain out for over a year at this point. Over a year where my quality of life consisted of how little I could move so as not to disturb anything in my neck and hoping that would equal not writhing in pain. The main problem was, even with the not moving and stuff, the pain still came. Super huge bummer to say the least.

Here I had done the leg work...figured out what my gut was trying to tell me...was my own health care advocate and had found out what the problem was. Have I mentioned the 18+ tumors in my neck yet?! That was a dang good gift if you ask me. The only problem was they wanted to return the gift. They had other fish to fry. Gah, why do they always have to have my best interest in mind...sheesh ;)

I saw my thyroid specialist and he was impressed with all that I had in my neck but he seemed much more impressed with what the labs and scans said about my kidneys. By impressed I mean freaked, as in freaked out a lot, actually. I was not worried about my kidneys yet. Yes, they were in the back of my mind but seriously wait your turn already, couldn't they see I was working on my neck here?! My neck would need a biopsy (which I completely expected) to see if the tumors (18+ in case it's slipped your mind) were cancer. I haven't even broached that can of worms yet. These tumors didn't look so good. Do tumors ever? They were all solid and I guess that's a bad sign...you want non-solid or fluid filled tumors if you're going to get them evidently. So, note to self, no solid tumors! But that was my reality, the ugly solid tumors. AND...yes there is an and...he wanted to schedule me quickly with a Nephrologist. A Nephrologist huh? That one set me back a little...I wasn't expecting that yet. A Nephrologist is a kidney specialist BUT they only deal with kidney failure and kidney disease situations. That kind of put the whole 'kidney thing' in reality for me. I now need a Nephrologist??? Just slow down a cotton pickin' minute people. This could like, be bad. Why it took me till then to figure that out I have no idea but there it was plain and simple. I, Francis Brock Spann needed a Nephrologist. The biopsy, the Nephrology appointment, and a kadrillion blood tests were scheduled for the next week.

So home from Jax I went. For all of two days. Just long enough to empty the suitcase over the washer, repack it, kiss the babies...A LOT and go back for another week. This time though I went alone. One of my sisters were helping with the kids and lets face it...I know the way like the back of my hand. I didn't expect a lot from my new Nephrologist other than a "lay off sodas and drink lots of water" and I'm not in anyway scared of needles so I had the biopsy thing in the bag. Piece of cake. In my mind it just meant five more days and we can schedule my surgery that would cure my neck pain, rid me of this awfullness and give me back my life. Dude, I couldn't have been more ready or had it all more figured out.

The week was inevidably considerably one of the worst weeks of my life. Dumbest idea EVER to go by myself! Someone remind me who came up with that "I got this in the bag stuff...what the heck?!"

I'll give you the quick rundown of the schedule

Monday: Kidney scans (yes more) and Nephrology

Tuesday: Blood work and something else that I can't seem to remember????

Wednesday: Biopsy, Neuro-Opthamalogist (Brain/Eye guy)

Thursday: Endocrinologist (Thyroid dude)

Friday: Open (or so I thought)

I guess the kidneys needed to make themselves relevant because I was in for a SHOCKER at the Nephrologist. Yes, I am in fact in Chronic Kidney Failure but I am in an acceptable level (right now) of failure...if that makes any sense. Basically means I'm not ready for dialysis or transplant YET. That was the good part of the appointment I guess if there was a good point. I guess I also have a couple of different kidney diseases. Great...just great. They are severe and can cause complete loss of kidney function. I just sat there and had this thought of at what point was someone going to just out and say "just kidding"?! He went over an entire new diet that I had to follow. I'm a darn good patient. Give me the rules and I will follow them but this, this diet he put me on...WOW it is extreme. I will get into the diet on another blog because frankly it requires it's own posting but seriously...it is all kinds of CRAZINESS. In addition to the dietary requirements of my newly discovered diseases, I have to see him every 3 months for like EVER for a special kidney scan and to check in. It's a dang good thing I like the man because we'll be spending most of 2 days together every 3months.

Tuesday was the actual bright spot in the week, just blood work and some other appointment that must not have been too important because I have forgotten what it was ;) I do remember that I laid out. That was memorable. Anyone who has kids knows that you don't really get to lay out in the sun anymore. You get to sit in the sun, play in the sun, but a chance to really LAY in the sun rarely presents itself. The Mayo is (thankfully) in Jax Beach and my hotel was just around the corner from the Atlantic Ocean. I got like 3 gossip/entertainment magazines, my ipod and I laid out for hours. It was magical. So relaxing in a week filled with very yucky stuff. I could hear the waves. Feel their vibrations on the sand. Rejuvenating...that's what it was...simply rejuvenating!

Wednesday: In future reference we can call this HELL DAY! Literally. There is no other was to describe it. It was as if the devil himself welcomed me into his abode, showed me around a bit and LEFT ME THERE! Seriously people. Not to mention that I had to go to hell alone. Why did I think that was ok?? Support. Support. Support. That is my new motto. I will ask for SUPPORT! And then I will ask for more support! It was biopsy day or hell day which ever you prefer to call it...the names are definitely interchangeable!

I wasn't even nervous. Not even a little. Let's get this show on the road peoples. As I was escorted off to a surgical suite I began to think "What the what"? I signed up for a biopsy people! I laid down in my specialty surgical outfit and for a long time it was just me and this cute little ultrasound lady. She checked out all of my 'ugliness' as she called those 18 or tumors for a while until she figured out which was the best angle for the doctor. The doc comes in and starts to explain what exactly they are going to do and it was at this point that I wanted my Mommy. Or my Daddy. Or frankly anyone at all that could have loved me through this. The nitty gritty is...18+ tumors, they biopsy all of the ones above a certain size, which in my case is something like 15 tumors. Each tumor that they biopsy has to biopsied 5 times so that there is no contamination and to make sure they got a great sample from each one. Because they are solid they can't just stick the needle in and draw fluid out (like I said before...if you're going to get a tumor...for the love of God, don't get a solid one) they have to stick the needle in and continually jab the needle in and out OVER and OVER again until they have enough of a sample. So, around 15 tumors, biopsied 5 times apiece with each biopsy consisting of stabbing the needle in and out to get the sample needed (10-25 times each biopsy), all of this happening right in front of me in my neck where I could see every bit of it. IT WAS AWFUL! It lasted hours and I can't even begin to describe how bad it hurt. Soon after the biopsy started the doc figured out that the tumors were all calcified and EXTREMELY difficult to penetrate. So they basically had to stab the fire out of them to get into them to get a sample over and over again. This is the point I wanted to scream ANESTHESIA! Every single time they stabbed they pressed down on the tumors so hard (to get in) that it pressed on my esophagus so badly that it closed it each and every time. Saying it was bad is such an extreme understatement. I couldn't cry for fear I would move and we would have to begin again...and that was just not happening. After enduring this for a few hours (by far some of the worst hours of my life) they were done. They had the samples and it was over. My neck was so swollen at this point that it was literally wider than my head. I was a mess in more ways than one. I got up, got dressed and left. I made it all the way to my car and I began to sob so hard I hit the ground. I couldn't stand and I couldn't stop crying. I know you're asking yourself, "Wait, she can drive after this procedure" and the answer is "Yes" because I was STONE COLD SOBER! NO MEDS WERE GIVEN BEFORE, DURING, OR AFTER THE PROCEDURE! To cut them a little slack, they had no idea that the tumors were so badly calcified or that it would take over 3 hours...but seriously, it was the stuff of worst nightmares.

I cried that entire night and most of the next day. I went to my hotel room and sobbed and sobbed and sobbed. Oh and put ice on my ginormous neck. And sobbed some more. At one point during the evening I got a call from the doctor who left me a voicemail saying that the results were in and it was all benign. Once again, I had not been dealt the cancer card. I think that probably made me sob even worse. What a blessing. So by the end of the night I wasn't sure whether I was sobbing out of joy, out of the horrificness that had taken place that day or the extreme pain I was in from my mutilated neck...but I'm guessing it was a little of all three. I haven't cried myself to sleep since I was a little girl but I did that night.

The next day I met with the endocrinologist again and he went over the results in more detail. I just wanted to know when the heck we got these things out of my neck. That's when the other shoe dropped. He didn't want to take them out. Poor man, the tears just started flowing again. You have to remember that in my opinion these tumors were causing all the pain, it seems logical but he didn't agree. He had a bundle of other specialists he wanted me to see in regards to the pain but the tumors would stay...for now. It seems the tumors were attached to some very important things in my throat and well it was just best for them to stay if they could. I wasn't happy about this for a multitude of reasons. The idea of tumors staying in my body is insanity to me...just craziness. Plus...what about all the pain????? I couldn't live like that any longer and after the day I had had with the biopsy I was in no mood to hear all of this and he could tell. He made the appointments with the other specialists for the next day while I sat and cried and rolled my eyes (my mother would have been horrified). Off to the hotel I went feeling completely defeated.

I perked up for the appointments for the next day but was doubtful they would warrant any results. I mean come on now...I had found the solution and they just weren't listening ;). But off I went. They did some scans of my neck with some equipment I had not seen before. But I was not impressed after the last couple of days I was pretty certain that these docs didn't know what the heck they were doing. Then I got the results...an electrical problem. I was like "seriously dude doctor, what do you take me for an idiot". An electrical problem???? He just smiled at me while I pretty much dug into him about how doubtful I was that an electrical problem had anything to do with my enormous neck pain issues. Poor guy, he really got the brunt end of all that had been through that week, but I must say, he took it like a champ.

He described how when they 'scooped' (so eloquently put) the brain tumor out it caused some 'miss-firing' in my brain to put it simply and the miss-firing was sending out pain signals to my neck on accident. If any of you are sitting there with one eyebrow raised and scratching your head like what the hell...it's ok because that was me sitting across from this man. He prescribe me a pill...yes that's right a pill that was going to block all the pain receptors from reaching my brain which would in turn stop them from reaching my neck. A pill. A pill was going to solve all of this?! I had my doubts. Doesn't this man know I've tried umpteen thousand different pills, patches, therapies to make this pain stop. He just smiled and said try it for me. So I did. For him. Or for me, so I could show him he was wrong. But that's the thing...he wasn't. I took the pill and continued to take the pill and about three days in the craziest thing happened...the pain just stopped as quickly as it came. I guess that doctor did pay a little attention in medical school after-all! ;)

I'm still on that pill today and amazingly enough I've had NO MORE NECK PAIN! Which is probably why it's taken me so long to write this post...for the first time in at least a year and a half I am living life. What an exciting sentence to write. It feels so great to be finding myself in the mist of all this again. Finding a new self though because I don't think you can go through all of what I've been through and be the same person and right now...that's ok with me. I see things differently than I ever have before and that's ok with me. My neck/throat tumors (all 18 of them) and I have made a temporary truce :). They can stay...for now. I have to get re-checked regularly for growth to ultimately make the decision whether they stay or go. I guess we'll just wait and see. And I might just put some trust back into those docs who were only looking out for my best interest ;)

There are still trials...I have to manage to whole 'kidney failure/disease' thing and that's an event in and of itself but I'll be navigating it mostly pain free. So for right now, in this time, for this brain tumor chick that's the best it's going to be. ;)

Halle-FREAKING-lujah the dawn has arrived...well sort of?!

2011-03-09T07:00:00.007-06:00

The 'darkness' that was on display in the last update only lasted (thankfully) about a month. It was a really bad month. I'm telling you, being in that much pain for that long really starts to wear on you, or at least it did for me. Emotionally, that dawn came for me (lets face it...I'm just not a darkness kind of gal) but physically it just all came crashing down.

I had known something was going on with me...something more than we already knew. Just a feeling, I guess you could say a gut feeling. However I had no idea of the can of worms that were going to be opened. Right before Thanksgiving I started having a lot of abdominal pain but in all honesty, I'm a woman...it could seriously be anything, I didn't even give it a second thought after I downed some Ibuprofen. We were scheduled to go to my sister's in Georgia for Thanksgiving and I was pretty excited. I had much more 'important' (to me at least) things on my mind rather than a little tummy ache, seriously people I had to pack and get ready...I have my priorities ;) I got all that packing done and woke up the morning we were scheduled to leave and of all things...I could not pee. Seriously like COULD NOT PEE. Obviously as the day went on that became pretty uncomfortable to say the least. I called the doc and we both thought it was just a little UTI (urinary track infection) he prescribed antibiotics and that was that. The problem was I was WAY too uncomfortable to make the 6hr drive to Georgia...man I was pissed. Little did I know it was just the beginning.

The UTI would not go away. At this point, I was a little ticked at this stupid UTI...it was really cramping my style to say the least. I didn't have time for this...I was still trying to figure out the whole horrible neck pain issue. To make a long story short...I ended up seeing a Urologist to try to get rid of this UTI that seems to have set up camp in my kidneys. Because of all the freaking tumors everywhere (ok ok just in my brain and my spine but it seems like everywhere) it's believed that I have a syndrome that has caused all of the tumors. It's Von Hippel Lindeau...yes that really is the name. It's rare...like super crazy rare. Because I could get anything commonly treated....heck no, I go for the rare...just my style ;) This syndrome can also cause tumors on the kidneys (of course I should have guessed...not just a stupid UTI) so a scan of the kidneys was ordered. The results were nothing more than shocking and I swear that if I had not already come out of 'my darkness' I would have seriously lost it. I will spare you all the details but it basically said that my kidneys were crappy and that I have Chronic Kidney Failure. I seriously wanted to say "No really, I just came in for a UTI...I just want that, Thanks though".

After another scan (I swear I'm radio-active at this point) it was confirmed...chronic kidney failure. I seriously wanted to scream..."Whoever can hear me up there, you do realize I'm 31yrs old! Oh and by the way I just got rid of a brain tumor and acquired a 'syndrome'...a break please and thanks".

It was a lot. It was all just a lot. It really was all just too much. I was trying to take it all in stride...I really was but the problem was IT WASN'T OVER.

They were still trying to figure out my neck problem and it was becoming more and more of a major problem. I was drowning underneath the weight of it...seriously. I needed answers. Even more than the kidney issue, the neck pain was SO much more overwhelming. The doctors did some 'special' MRI's of my spine and actually found some alignment issues and for a brief second we all thought those issues were the answers we'd been looking for. But it was only for a second. Me and my gut instincts had to come into play!

After some more images of my neck it was discovered that there were also tumors in my throat surrounding my thyroid...my only reaction was "of course there are". To be exact the were 18 tumors found and more that were smaller so they didn't even bother counting them. Yes, that's right, I said 18 tumors people! Can you even imagine! Believe it or not, in an odd way I was actually a little excited by this. I know you're thinking I really have lost my mind but seriously it was an answer and it was fixable. For months that's what I asked for...an answer. Yes, it wasn't a great answer but for a moment it provided closure for what was plaguing my neck. For even that moment my spirits were lifted. This could be fixed! I could have my thyroid out as well as the tumors and this horrible pain that had plague my life would be GONE! The kidneys seriously took a back seat to this new info. I made my appointment with the thyroid specialist over at the Mayo and look forward to the day without any pain!

Boy was I in for some big surprises...I mean, what else could I expect, I am the brain tumor chick.

The depths of my despair...

2010-12-30T00:54:00.010-06:00

I have to say that I never in a million years thought this journey would be this long. All of you who felt like I have been so brave and positive must realize that I signed up for brain surgery ONLY. That's how I was able to keep it all together and I have to say most of the time it's worked. 98% of the time I am that eternal optimist...that girl that makes lemonade from every kind of lemon I've ever been handed but (there's always a but) there are those dark moments. They creep in. They over stay their welcome and it would be a lie to deny it.

Everyone has trials in this life and I have felt very blessed with the lack of health issues in mine...that was pre-Egore. So when Egore came along, as devastated as I was, I quickly regrouped and decided there was no point in complaining...this was my lot and I would face it head on, get it over with and get on with things. I had no idea of the magnitude of what was beginning. I had no idea it was only going to get worse. That a year later I would be but a shell of who I once was. It's been a little over a year now since D-Day...several years of headaches and neck pain and I can honestly say...it's taking it's toll.

In so many ways I became numb. Numb to this world and most everything in it. There's been very few exceptions. Days went by, months, and they truly were just numbers on a calender. It has sucked. For a long time I couldn't pin point it, I just knew I felt nothing. And I do mean nothing. I guess it's been a coping mechanism, a way to survive the day to day. Except for the pain of course...that, of course, could not go numb.

It was when I went to the funeral of a family friend's dad that I realized how far I had fallen. I knew him as an acquaintance but was mostly there to support the family, not because I felt compelled to, truth is, I felt nothing, but only because I knew it was the appropriate thing to do. (I mean there are standards evidently :) A good southern girl can't lose all her cooth) During this time I've rarely cried...for anything. I wasn't worried about going to this funeral, in fact, I never gave it a second thought. It was a Catholic funeral, I had never been to one and the History/Religion fanatic in me was a little intrigued to see the various rituals. (I know I'm a dork) To top the emotionalness (I know, not a word, but work with me) of it, it was a funeral with Military Honors. Which most of you realize means you don't even need to know the person and it still equals tears. Not me though...not then. I walked past the flags in awe of the dedication (it was cold) but nothing more. I think that was one of the moments I realized...I didn't feel anything.

I sat down towards the back of the cathedral and was ready to observe. The military guard wheeled the flag covered casket in and all of the sudden my stomach flopped. It was at the moment where the priest (who happened to be the son of the man the funeral was for) met the casket, right in front of me (dear Lord why did I sit in the back) and began his blessing on his FATHER'S CASKET! It was right then that I realized I had not been to a funeral since I planned my own and I was still unaware if I would soon be needing those plans. You know, most people would have realized these things ahead of time and prepared themselves...oh no, not me. Remember, this was going to be a breeze.

Panic struck me fiercely. I was overcome with shear fear. Fear of all that I had gone through. Fear of the immense amount that was still ahead. Fear of the awful diseases the doctors were now throwing on the table. Fear of it all. All I could do was panic.

Let me give you a good mental image because this is worth one. I'm crying almost uncontrollably, which I had not done in several months so there were A LOT of tears stored up, but as silently as I could (didn't want to take away from the actual event...the FUNERAL taking place). My stomach is sick and I just know that I'm about to vomit in the church right in front of this casket. People are looking. Oh yeah, I would be too, and I do my best to reassure them I'm OK. Meanwhile, I can't go ANYWHERE! They are still right in front of me. Thank heavens it was a funeral and at least some crying is appropriate. All I can think is "I HAVE to get out of here". But I can't, I'm trapped. What in the world have I got myself into?!

What seemed like an eternity later, they continued wheeling the casket to the front of the church and it was no longer RIGHT in front of me. I initially thought, "OK, now is the time to get the heck out of dodge" but I managed to compose myself a little and thought I would have to do this eventually (funerals are unfortunately a part of life) I might as well tough this out. The service began, conducted by the gentleman's son/priest and it was heart felt and meaningful for the family I'm sure. I, personally, concentrated on observing the Catholic funeral and tried not to miss any detail. The priest began discussing the Crucifixion. It is a story I know well. He got to the part where Christ is being led through the streets carrying his own cross while being tortured by the crowd. This is where I really realized I should have perhaps used that exit strategy. I was suddenly filled with emotions...again. Along with that panic feeling in the bottom of my stomach. Emotions I had successfully been able to push to the back burner, for the most part were now coming to the surface with alarming speed!

My stomach was flopping and the tears were flowing entirely too heavy, again. The crucial point was when the priest re-counted Christ having been on the cross for some time and looked up toward the heavens and pleaded, "My God, My God why hast thou forsaken me". That was crucial. I realized at that moment, that, those words, were what I had been trying so hard to fight off. It was my words exactly. It was the questions I had tried for so long not to ask. I had pushed them so far back, buried them so deep that I wasn't even sure they would ever surface. But they did, that day and there was no tucking them back in.

Unable to obtain help (medically), this has been a journey I had to take for the most part alone. There has been no one to solve the puzzle and no one who could take the pain for me and now I was at that point that it had all gone on for entirely too long, without answers and with NO plan in sight. The pain was just too much to bear, it was all just too consuming. I was very much at what I thought was my breaking point and all I could manage to ask, through all of my tears, was "My God, my God why hast thou forsaken me?". I felt every single one of those words ten fold.

Like I said before, I thought I had done it all right. I had taken it like a champ. Never questioned why, never wondered who had done this to me. Truth be told for the most part in my life I have been that girl. The girl who unfailingly did what I felt I was suppose to do. The good girl. Almost to a fault. So finally I was asking, why? Not why me but just why. Why was this going on and for so long? What had I done? Why couldn't anyone get to the bottom of all the tumors, of all the pain? Why was I still on this journey? Why could I not get help? Why the hell couldn't we figure this damn thing out. Where did I take a wrong turn? I finally uttered the words to myself, "this is not fair". This isn't just not fair...this is crazy. What was it that was eating up my body, eating up my life? That's what was crazy. I wouldn't wish it on my worst enemy. I became cynical, something that was foreign to me and my personality. Things that would crush others I simply responded with, "it is what it is". Not because I was that strong but because I no longer believed it mattered, I didn't care. I reserved all caring I had for my kids and those closest to me and that was it. I was sick. I was STILL sick and for the first time I was pissed about it!

Angry at whatever in the world had caused this. Not only, angry for myself but angry for anyone and EVERYONE out there who had ever gone through something this awful. Angry for my children and how this awful thing was stealing precious moments of their childhood that could not be returned. It has, for lack of a more intensely painful word, been HELL (and that seems too weak of a word) and I was finally able to say from the depths of my despair that there was NO part of this that was fair...and that only made me angrier.

I was breaking down. It was ENOUGH! I was tapping the mat as hard as I could to say "Time Out" but there was no break. I began to question things that hadn't even crossed my mind with the brain tumor. Hadn't I been through enough...hadn't enough of my life been taken away? The obvious answer was NO...with no end in sight and that little fact broke me down even farther.

I cannot describe the intense pain. I have had two babies, one I delivered naturally (not by choice, epidural didn't work) and the pain I felt during delivery was nothing compared to what was going on now. It lasted for days and days and days before any kind of relief came just in time for it to start right back up. It didn't matter how strong the medicine, it didn't touch it. It took EVERYTHING I had to keep up a front for my kids...I wasn't even strong enough to keep it up for myself anymore or other loved ones. I gave up on that...it required far more than I was able to give.

I didn't cry. I can honestly say I didn't even complain. It doesn't help, why do it?! I had become empty. I felt empty. I was no longer filled up with the things that made me who I was and I made no effort to get them back. I constantly questioned, "Is this how you wanted me? Did I not become low enough during my brain tumor? Did Egore not bring me to my knees enough? Was I too positive? Did I not learn what I was suppose to?" Who I was speaking to, I had no idea. It would be easy and probably most obvious to say that I screamed these things, these questions at God, at my Heavenly Father but it's more than that and I can honestly say it wasn't just to him. I was asking the world, I was asking fate, I was asking karma. I screamed this out loud with all hopes of getting an answer. It didn't come. Nothing did. No relief. No explanation. No words of comfort. I don't think I expected any but the questions had to be asked. After all...it is what it is.

I didn't want to hear about any of the life lessons I was learning. I didn't want to hear how I would get through this and that one day this would all be but a memory. I wanted to scream back, "Oh, you mean if I actually survive all this...right?! You mean if the diseases that were now probable didn't take my life? That was surely what you meant". I'm sure, much to every one's relief I didn't say those things, I just gritted my teeth and nodded. I wasn't sure I had much of a future to look forward to so I was only living in the present, the only thing I could do. And I presently wanted to know WHY! Why in the hell would anything like this happen to ANYONE???? These were hard questions to reconcile.

Every time I looked at my children, every time I saw the look of sadness in their eyes I only became more convinced that I had been forsaken. Forgotten. Somehow misplaced. More sure that this world was a crap shoot and I had not played well enough. I was stripped of any hope I once had and certain that this was a life sentence. This has been my hell and thus far, this has been my rock bottom.

What's that old saying...the darkest hours are just before the dawn...

(To Be Continued)

Sweetbitter/Bittersweet...it's all in how you choose to look at it.

2010-11-17T23:11:00.006-06:00

I recently had my one year anniversary of my D-Day (diagnosis day). It's been a year! It's been a year! I'm hoping if maybe I repeat it over and over again I might get used to the idea that IT'S BEEN A YEAR! It's so hard to believe, inconceivable almost. I had planned to update on D-Day but once I really thought about it, I was diagnosed on a Tuesday, October 27th but the diagnosis really incorporated the rest of that week and the weekend, so I had to wait.

Four days after D-Day was Halloween. So although I did my fair share of wallering in my pity I had no choice but to snap to. I had no idea whether that would be the very last Halloween that I would be able to take my boys trick-or-treating. If I would be around the next year to help pick costumes, to alter the costumes, or to relish in walking door to door seeking the best candy. That was such a sweet evening but also a very bitter one in the same respect.

Five days after D-Day was my beautiful oldest boy's 9th Birthday. It absolutely killed me that it wasn't 'business as usual' for his birthday. His Birthday Party had to be cancelled (it was the following week) which broke my heart. We went out to Pizza Hut, as we have done every year, and as pictures were snapped that night by relatives I knew it wasn't only to commemorate his 9th birthday. It was both to block their tears and to capture this birthday, these "last few days" before going to the Mayo, "just in case". No language was spoken to that effect but it was like the largest elephant in the room EVER.

The following day, six days after D-Day, was the day I left for my first visit with the Mayo. At this point I couldn't even think straight. My incredibly awesome friend wanted to take some family pictures for us, something I hadn't even thought of but it was such an incredible idea. I'm so thankful to still have this 'best friend' in my life. I'm thankful she knew what needed to be done. What if I didn't come back. What if this tumor had become a death sentence that had invaded my brain. The "what ifs" could and did go on and on and were completely overwhelming that day. We were ALL overcome with tears. The pictures turned out great but there were several that she shot that the grief, sadness and pain that we were all facing shone through.

It was one heck of a week. One that I never ever want to relive. I've thought so often about the one year anniversary. How great it would be to get to that point. How everything would be back to normal then...if I could just make till then. I had it all planned out. I would celebrate it with something physical. Something to show just how far I had come. Maybe a 5k around that time or a massive kayak journey. Something BIG. After all, this was a celebration, a celebration of life and living and all that that encompassed. All I can say about those BIG plans is "the best laid plans" :)

As the day crept up on me it was so very clear that there would be no 5k. No massive kayak journey. Not even something physical. That was the bitter and it was SO very bitter. I wasn't ANYWHERE near where I thought I would be. Not even close. I was enduring yet another round of physical therapy. The spinal tumors are wreaking havoc on my neck and back. It is so painful. I have recently, finally, consented to a little pain management which felt like such a defeat. It was something I had decided I just didn't want to do. I fought it for almost a year. In my former line of work at the hospital I helped take care of quite a few pain management patients and it was so sad to me. They were hooked, unable to step away from the procedures that seemed to be holding them captive. Now, I am by no means saying that that is all pain management does, as I now know, but it was my only experience with it so when it was suggested and suggested by so many doctors that maybe we were now to that point, it felt like a resignation, a resignation from the fight. I cannot do pills (I have 2 kids that I want to be able to be 'in the moment' with every moment of everyday) so for now it's just some strategically placed lidocaine (numbing medicine) in the most painful spots of my neck and back. It has helped. I wish I could say that it is a miracle worker. It's a miracle helper. About now I will take all the 'helpers' I can get.

I fake it A LOT. I guess I would venture to say most all the time. From everyone. I felt/feel like I should be well...that was the plan...right?! It's hard for me, as competitive as I am (yes even about my health) to say "No, I haven't beat this yet". As dumb as I know that sounds that's the way I've felt. So I hide most of what I'm going through. This is NOT my life. This is NOT what was planned. I am a runner, a spinner (exercise), a gym junkie, an avid kayaker, a lover of hikes, anything adventurous. These titles have been so hard to let go of. My mind wants to do all of these things again, so badly and occasionally I even convince myself I can. That's when I crash and burn. That's when the excruciating pain reminds me I can no longer do those things. That's when reality sets in. That is such a sad day. That, my friends is a bitter pill to swallow.

The writing has tapered off because it's no longer the happy ending that we all wanted, that, at least I had anticipated. I haven't in my heart of hearts accepted that this is my life and to write or even say how horrible it all is makes it become so much more real. That it's difficult every single day. To put on a happy face so that my children, my family, that no one knows just how bad it hurts. Mainly for them because I realize how horrible it makes them feel. I have seen the pain in their face for so long. I have heard the frustration with the situation in their voice and as much as I wish I had answers for them, for myself...I don't. I know that their frustration does not lie with me but with wanting results, with wanting this awful fight to be won. I see the way they look at me, how incredibly helpless they all feel, wanting to help but knowing they can't. This one is on me guys. I'll take willingly if means the rest of my family and loved ones are healthy and happy. I guess it's more to protect them. I hide it until I absolutely can't...and then they know, and it's a sad day again. When we all signed up for the ugly truth I'm just not sure we all knew exactly what that meant.

On my D-Day anniversary I went to my favorite place in the world. I went on a boat ride to my favorite island spot and walked the beach, picked up shells and just reflected. Reflected on what a year it had been. How incredibly thankful I was for every second of it. Even the horrible seconds. I was alive, something that I was unsure I would be a year ago. I was there lounging on the beach, doing a little bit of walking and soaking in the gulf. There were so many tears that day. I think I let everything out that I had been holding in for so long. On that island, on that day, I said goodbye. Goodbye to the old life that I yearned for so much. Goodbye to all the plans, the expectations and with them, the disappointments. I came clean with myself, with my thoughts. I have NOT resigned this fight. It's time to regroup. I do have faith that one day I might actually have plans and be able to really live. In the meantime, though, I had to let it all go, give all those plans that I'm incapable of fulfilling, a funeral of sorts. I set them free, off to sea that day. It was soothing and I came back refreshed. It once again was not what I had planned but I couldn't have been more thankful for that day. That was the sweet and I'll will take every bit of sweet I can get.

A week or so later we once again had some family pictures made by that same friend. At the time I didn't realize the similarities or that it was almost a year to the day. These pictures were different in every way. They were not solemn. They were not grief stricken. There was such an excitement to them, a happiness in just being there, once again, as a family. Things are not anywhere near where I thought they would be but...I'm here and for me, for us, that's enough to be happy for.

Life does in fact go on and I wish so much that I could live strictly in the moment but I can't. These moments are tough. They are so very painful. I find myself once again looking for a point in the future that things are better. I'm unsure what that 'better' will be but I will take it whatever it is.

There's one more thing that came to mind on this day. I was overwhelmed with emotion when I thought of all of you. My readers. My friends. Those of you who have stuck by me through this and continue to sign up for this next chapter. I'm in awe of all of you. There are times I don't even want to stick by me :) You given me your prayers, your kind thoughts, your time, and sometimes even more. You've encouraged me when I felt I couldn't go on and built me up when I needed it most. I realize that most of you will never know how much you've touched me and my family but you have SO very much.

This brain tumor chick is surviving...unfortunately I'm not thriving yet but, especially around this momentous day, I'm still hopeful and that is sweet.

MORE....are you really sure Doctor...more?????

2010-08-24T12:58:00.006-05:00

August 24, 2010

Tomorrow I start another round of Physical Therapy, this time to work strictly on my neck and upper back. I should be excited. I mean at least we're moving forward...right???? Forgive me for my sarcasm but I cannot seem to get my mind wrapped around it and I only have T minus 24hrs to get it that way. This is my dilemma....

My neck and back HURT, almost all the time. I would actually guess it's more like 99% of the time. It's a very difficult job to keep 'morale' up everyday and 'keep on truckin'. I don't have the ability to lay in bed all day and 'nurse' my wounds. It's not my style even if I did. I am a mom, first and foremost. It's what I do and I am still refusing to let all this define me or my children's childhood. I have such strong convictions about being a mom. I've been a working mom, I've been a stay at home mom. I've been an avid active mom and I've been a sick mom. One thing that hasn't changed through all of that is that they deserve the very best of me.

I know and realize with such strong certainty that there are so many in this world that have it far worse than I (and that thought is never far from my mind) but, with that said...IT FREAKIN' HURTS! The pain is intense and I'm telling you, it wears a person down. Sometimes I just want to scream...IT HURTS and BAD. You'll be glad to discover that I frequently refrain from screaming ;) I'm so sick of the pain and even sicker of no plan. Have I mentioned I NEED A PLAN?! :) Some might say, "Francis, isn't physical therapy a plan?" and I would say to that, "excellent question! But no, in this case, it doesn't feel like one". It feels like a 'we can't figure all this out yet so let's throw some physical therapy in there to see how that works...plan'. And I'm just not thrilled.

Physical Therapy is tons of work and let me just be the first to say, I'm not afraid of some hard work! I actually welcome it. If someone were to tell me "Francis if you tow this school bus over the Hathaway Bridge (a local bridge) using nothing but yourself and this rope, you will be cured of this pain" I would do it. In a heartbeat actually. Game on. I would train and train and train some more and figure out how to get that damn school bus across that damn bridge. It may hurt like the dickins' but if the end solution was guaranteed or even a strong likelihood that would be that I was better it would be more than worth it. So the work is not the problem. The problem is what the work brings....MORE PAIN! It hurts so bad. Physical Therapy makes it hurt so much worse with no promise or likelihood of a positive end result. So for the next 4-6 weeks it will not be hard to keep morale up, it will be like pulling teeth to keep morale up. I just cannot seem to get excited about that. If I were to be completely honest I would venture to say I'm dreading it.

Picture of the hathaway bridge so that you can completely have an acurrate visual image of the lengths I am willing to go to :)

Problem is...that's just not me. Dreading doesn't sit right with me, it's not comfortable. I need to be positive. I need to be 'up'. Not for my 3 readers out there (though I love you dearly) but for me. For my little darlings. I desire to show them how to fight the good fight. How to stay in the positive when everything in nature is dragging you down. I do allow them to see that sometimes that it's just tough (I don't want them to have any allusions of super woman, not that there's any chance of that right now). I allow them to see my vulnerability. Strictly because I don't want them to think I just breezed my way through this (no doubt of that lately :). I want them to understand you have to work to be where you want to be, even if what you want is just simply to stay positive. It seems like a silly goal and in all my life I would have never in a million years guessed that this is where I would be right now...trying to not loose hope. To not give in to what is starring me right in the face everyday. But hey, there's not much in this situation of mine that I would have guessed.

Maybe that's the way it's suppose to be. Actually I'm sure that's the way it should be. You shouldn't know what's ahead. Although, right now I would love to know if health is in my future and would be willing to pay most anything to some fortune teller to tell me that :) but again, I think it's best to not know. If I were to know right now that this struggle would go on and on and on and on and on, I can't even imagine what my outlook would be. I truly believe that my brain surgeon allowing me to have ideas of grandeur of returning to my running and spin schedule just a mere 6 weeks after surgery was the best thing he could of allowed me to believe. I laid on that operating table, not thinking about a year long plus recovery/journey, but thinking of feeling the wind on my face once again. Thinking of the unbelievable feeling of completely a tough run. It didn't take long, after surgery, to realize that that goal was a bit of a stretch, to say the least. About 30 maybe 45 seconds after I awoke from several hours of BRAIN SURGERY, I think I got the picture ;) After the fact, when I asked him about that promise he said simply, "Well, it was what you needed to believe". And he was right I did. I needed to believe that fact almost as much as I needed my brain tumor removed. It was essential to keep me going. It was essential to get me calmly on that operating table with no assistance of tranquilizers or restraints. It was crazy. It was a crazy idea. It was a looney tune idea. Yes, everyone, including him, thought I was NUTS but I needed to delude myself. Right now I could use some more delusion. ;)

I wish I was still that naive. I wish I had not realized the harsh reality so very many times. I wish I could still conjure up naive ideas of grandeur. Today, I only wish I could naively believe this physical therapy could and would cure it all. It's hard though, unbelievably hard. I don't even really know how to describe how hard. I know very well that in T minus about 36hrs I will be writhing in pain from the work that we did. I am as sure of that as I am that I have a right arm ;) Not because I'm thinking negatively but because I've been here and done this before.

I guess in some ways I haven't completely lost my positivity because the honest truth is that I do have hope. Hope that this will work. OK, no, not that this will work but that it will help. If I did not have that hope why in the world would I even go and torture myself. It's either that I have hope or have completely lost my mind ;) Which frankly...could be the case.

I am still very much in that BRING IT ON place with myself and this situation. I guess, again, if I'm honest it's a Ehhh...bring it on, I think, maybe?! :) How do get pumped up to hurt. If any of you know, please, clue me in on that ;)

I will persevere. I am going to get my mind wrapped around it in the next 24hrs (and counting). I will do this. And not hesitantly. I will throw myself into this like it's going to breathe life into this body of mine. In the next 24hrs I will somehow convince myself that this could and will work. It's the only way I know to go about things. If I can't do that, then why do it at all?!

I have 24 more hours to that...right?! ;)

This Brain Tumor Chick is heading back to the trenches and has to find the courage to jump in with both feet...YIKES! Stay tuned, the unfortunate adventures of this brain tumor chick continue.

Change, Change and "Did you hear?"...more change :)

2010-08-04T22:43:00.009-05:00

Wednesday, 04 August 2010

I don't do well with change. I never have. It's not a secret and if it's is, it's one of the worst kept I've ever heard. Looking back that's one of the first characteristics about myself that I realized. From the time I was a very little girl. I avoid it at all costs. I ignore it, until it hits me smack in the face. Going on the assumption that maybe if I ignore the change, maybe it will somehow go away or I possibly won't notice it. A very intelligent assumption I know :)

I have stayed in all different kinds of situations (ranging from mundane to the most serious) for far too long just to avoid change. Silly. When I really stop and think about it. Life is just too short.
Change is inevitable. Being frightened or avoiding it complicates life completely. Life evolves. There is no stopping that. I'm not the girl I was at age 5. I'm not the girl I was at age 25. At 45 I doubt I'll be the girl I was at 30. We, human beings, evolve. We change because of situations, wisdom, idiocies or even for things completely out of our control...like tumors. Why couldn't I be scared of something like...Water Buffalo? They are not native to anywhere I have ever lived and I think I would have a much better chance of avoiding those :)

I have gotten much better over the years with change. We aren't BFF's, change and I, but we are definitely not enemies either. I just avoid him at all costs. The little bit of progress I have made has been hard fought. Facing junk you don't like is no fun and let's face it, those kinds of tasks usually get sent to the back burner. (I know you all didn't know any of this. Huge breakthrough I'm sure :)

I think that has been one of the hardest issues with my brain tumor and subsequent spine tumors. They have changed things. They have changed EVERYTHING! There's that awful word again, I feel like there should be scary movie music in the background. I can honestly say there is NOTHING in my life left untouched from all the changes.

I have been in a constant fight to regain my life. To right all the wrongs that have been out of my control. I'm spiraling. I'm spiraling farther and farther away from me, from the person I know as me and closer and closer to this person they call a 'Patient'! Oh the horror! (You should all gasp here) It has tortured me, this change. I have fought this transformation tooth and nail. I have fought the change. It's a losing battle and I hate losing.

I have mentioned more than once (who am I kidding more than a kagillion times) that I, Francis Brock Spann, the Brain Tumor Chick, want my life back. I want me back. I want the pre-brain tumor chick back. I have pleaded with my doctors, each and every time I have seen them, get me back...back to where I was, to the life I know so well. None of them have had the guts to utterly honest with me...that's it's just not possible...and I have to say I don't blame them one bit. I don't do well with people telling me I can't achieve something so it was probably best to just leave that one alone.

I've realized in the last few weeks...it's impossible. It came more to a head when I visited the Mayo this week. I saw a Physiologist. Someone who's going to help me 'live' more fully and eliminate some of the neck pain. It was there that I walked into an exam room to meet this new physician that I was very hopeful that he could 'fix' me. He was sitting there, up to the desk, in a wheel chair. Spinal injury. He had rigged the whole room to adjust to him. It was amazing. He went over my spinal tap results...ALL NEGATIVE! YAY! Then he got to the neck pain. He was so matter of fact. Cut to the chase. My kind of man, got right to the point. He said (in his awesome Jamaican accent) "you've got these tumors down your spine, not much can be done about that right now. You're having severe pain in your neck and numbness in the left arm and leg. I am going to help you fix the pain in your neck and we're going to get you off all these meds through hard work and stregthening. The numbness though, let go of that. It can't be fixed, at least not now. It could be from the tumors or it could be from the brain surgery. But you...you are doing good for all you've been through...let go of that." It was like...OK...alrighty then...I will. I LOVED HIM! My kind of Doc!

The things that I have wish for and worked hard for will NEVER happen. (There's another word I hate...never) I'm come to realize...that's ok. I cannot go back, no more so than I could go back to when I was 5 or when my children were babies. It is just a fact and as much as it's wonderful to think I can and I will, I believe those thoughts, those efforts, are now hindering me. I have taken the time to cry over this fact. I have morned the old life, the old me, and I'm done. I have been so completely consumed with getting back, back to my old life and the old me that I have hardly noticed this 'new' person emerging. A stronger, more confident person. More self aware and more controlled. I have hardly noticed the girl I have become. Taking a closer look, I'm kind of digging her. She kind of rocks!

I was reading recently, probably in some doctor's office and I came upon a quote. I had an epiphany. I've never had one of those before or not one I've been aware of. It's the only way to describe it. A realization that all this change is simply a part of this life. The quote was, "...one must always be prepared for riotous and endless waves of transformation". Unbelievable. There it was. In black and white even, the words that pushed me through all that pointless morning of my old self. The words that pushed me into seeing that maybe all this change isn't a bad thing. Maybe there is a point to it all.

This knowledge, this understanding, as simple as it seems, has allowed me to take a step back and observe all the transformations that have taken place. How I have changed. The things that I continue to hope, change. For instance, I hope in a year from now I have changed again and evolved to be even stronger even wiser, both physically and mentally. It's allowed me to understand the things that won't change...ever. I am and will always be The Brain Tumor Chick (along with umpteen dozen spine tumors). It's always the things that you would love to change that you can't :) I will always be (gasp) a patient. It's a part of me. A part of this new life. I'm learning and I'm growing into these new shoes that are bigger than I am. Why this had to happen to me? I have not the slightest idea but nor do I care anymore. It is what it is and it's just that.

I have to adapt. I have to learn. I have accepted the new me and who I am. I will no longer allow myself to yearn for before. Before, doesn't exist anymore. I cannot attain it. Only in treasured memories. Like the kind you have from childhood. You cannot relive it or retrieve it, it's simply there, and a part of who you are. I have to figure this new me out, this new life. I have to give 'it' a chance to thrive. It's a thrilling idea. I feel like I'm at a starting point, the starting line and the possibilities are endless. Change no longer frightens me, not in a bad way. It's a frightening that's a rush, an opportunity, something you just have to do. I'm not a pro yet, but I say yet because I fully intend to change that.

Life is short and life is so sweet. I intend to embrace every day that I have. No two are alike and there's no telling what the next is going to bring for this Brain Tumor Chick but for the first time she is strong enough to say...BRING IT ON!

From The Diary of This Tumor Chick

2010-07-20T10:32:00.004-05:00

I know it's been way too long since my last post. I've started this post so many times but could not finish. I didn't have the words. At that point I had just got diagnosed with ONE spinal bone tumor which the doctors here thought for sure was cancerous. It's been a couple of months now, hard to believe. This one, this fight, hasn't beat me, but it has sure enough kicked my butt. Maybe even a couple of times over. OK, umpteen dozen times over. I know it's crazy to say that this was worse than the brain tumor, but I think it was.

I've not been sick very much in my life. With the exception of a few minor (very minor) blips in the road I've been a very healthy girl. Always active, always moving and always pretty healthy. So when the brain tumor came along it was devastating. It was earth crushing. But...(there's that but) I was up for the fight. I was resilient. I was poised for the battle. When the spine tumor came up (along with the numbness in my left arm/foot) things were different, I was not any of those things. I was still very much at the bottom of the barrel as far as healing from the brain surgery. I was climbing, grasping, and clinging to ANY progress that could get me back to a place I call normal. I was still very much weakened by the fight.

Going into the doctor, initially, I knew an MRI was in store. My history, along with numbness, a doctor would have to be an idiot not to do an MRI. Of course I was nervous but in all honesty, I thought "there's no way, not again, not so soon"! So as I read the devastating words that proved my philosophy very wrong, I cannot even describe the crushing blow. It was as if someone took away any security I had for the future. Any hopes. Any dreams. Any progress I had made. Blew them right away in one single awful moment. Seriously, what the freaking hell!

Of course I went through the natural sadness I've become so acustomed to but this time I was just mad. Not mad at anyone or really anything. Just mad and so angry. I asked questions that I really didn't ask with Egore (brain tumor). Why? Not why me. Just why. Along with "Are you kidding me? Like really is this a joke?".

I wasn't myself, I'm not sure if I even am now. I cannot describe the amount of anger and despair that has run through these bones. Anger I have never known before. It's been days, weeks and even months of despair. I've held my head up the very best that I possibly could but mostly just for my kids. I've made little to no effort to do it for others. Not even family or the closest of friends knew how to reach out to me. They tried. Of course I put on a semi-happy face but they knew. They could see through it all. I've withdrawn, from life in general. I simply did not know how to just 'pick up' and go on with life. I've gone through the motions but that's about it.

A little back history...When I went in for the headaches in October 2009 (pre-knowing about Egore) the thing that struck the doctor as odd (OK there were a few things) was that I had little to no reflexes on my left side and didn't feel things very well over there either. These were symptoms I had not yet realized but came up during the exam. So although she did not expect to find a tumor, if there was one she was expecting it to be on the right side, which would explain the left side difference. So, when it showed the tumor on the left side everyone was pretty perplexed. Doctors at Mayo warned me that the neck pain (which I thought was associated with the head pain) and numbness (that I could not yet feel) on the left side may or may not resolve with brain surgery. That we may indeed still have to look into all that but the brain tumor had to come out then. I had begun having seizures, the symptoms were far from tolerable, it had to come out. I never thought much more about my neck or so called numbness. That is, not until the neck pain had become intolerable once again and I could actually feel the numbness.

The three weeks I had to wait, after getting initial diagnosis (of spinal tumor) was unimaginably horrid. Especially when you're told the worst. That was a war in and of itself not to go crazy waiting. I guess that was about a month ago that I finally went to the Mayo with all this. I got some wonderful news and some equally horrible news. It was like giving me hope and then snatching it all away.

The spinal tumor, which I have named Borus (yay JoAnn), was in fact benign. Awesome, oh so awesome news! But...(man I am hating the buts) there were tumors within the bone of every single vertebrae from T3 down. There's the horrible. To top it off they are completely inoperable. Not only because there are SO many but because getting to them, getting them out, could kill me. Nice. (very sarcastic) That's all I could say...nice. Any amount of positive thinking or will power that I had left was sucked right out of me at that point. So now the battle is how to treat them and if it's Borus causing the neck pain/numbness at all. Before we begin treating or not treating, depending on what we decide, we have to rule out everything else it could possibly be. Any unanswered questions the doctors have about possible causes must be answered. Words were uttered that I never ever thought I would hear. Things like MS disease. Things like Pain Management. I wanted to scream. Literally scream. "I DON'T WANT TO MANAGE MY PAIN FOR THE REST OF MY LIFE, I DON'T WANT TO PATCH IT WITH PILLS! I'M READY TO BE WELL!" I refrained. From yelling at least. I did tell him while sobbing that we just needed to figure this out. He is a typical man. Great doctor but typical man. His response was at first concern for my tears but then "I think there may be a little depression going on here too". I pointed at the computer screen that was on the table and displaying the awful pictures of my spine and said "ya think". Probably not my best moment but he at least got it. He changed his words to "I think maybe there is reason to cry". Again...ya think?! We made arrangements for the testing to begin and he once again assured me we were going to get to the bottom of all this. He promised he would return me to an active life again. I was tempted to ask for that promise in blood!

Which brings us to this last week. I spent most of last week back in Jacksonville (my second home) having tests done which included a spinal tap (YUCK!). I did great the day the 'tap' was done and thought I was in the clear for complications but of course (because at this point I kind of expect the complications) the next day the spinal headache, caused from extracting fluid from the spinal cord, set in. So I spent the next two days flat on my back doing anything I could from that position (which isn't much) to keep me from going stir crazy! Which by the way didn't work. This trip I took my oldest friend Ashley (known her since her birth, I'm 3 months older) which was fun. We were two crazy girls in that hotel room. She's a yoga instructor which came in oh so handy! We did some 'laying down' yoga. Which I know does not sound like much but really it was great and made me feel better.

On Friday, I finally got another spinal tap, this time to insert a blood patch so that I wouldn't leak anymore fluid. It immediately stops the headache by returning pressure to your head. I also saw another doctor attempting to lessen the pain and the medicine that I'm having to take to keep the pain at bay. I have no results from anything for 2 weeks this time. Of course. These tests have to be sent to their facilities in Minnesota.

So Ashley and I left Jacksonville. Without any answers, no results and a crazy painful back from two spinal taps within one week. Home to my babies. Home to snuggle them up. Home to pretend that mom is perfectly fine and didn't endure anything while gone from then. Pretending has become essential.

The intense pain is for now (thanks to many many pills, which I lovingly call my tranquilizers) at bay. Still there, but not near as bad. I can function, which let me tell you, is great progress. I need a plan. I need to know the solution. I need a map of what to do with all this. I am, by nature, not a planner. Probably the exact opposite. For most things I tend to fly by the seat of my pants, which drives some people CRAZY! I LOVE it. It is me. I work best under pressure. I'm a last minute girl and it works for me. So for me to say I need a plan is a little out of ordinary. I've always said "I can deal with anything, I just have to know what it is that I'm dealing with. Then I can make decisions accordingly". That has applied to every aspect of my life. Give me the status, the report on things, the truth and I will deal but I have to have the information first. Even with Egore, there was a plan. I got the details. I knew the risks and I made decisions accordingly. It was very cut and dry. It was scary as hell but I had a purpose, a goal, an end result in mind.

This time there is no plan. There are no details. Just a lot of unanswered questions. It is driving me nuts. I couldn't begin to tell you how much I desire to leave all this behind and return to life. I WANT TO BE WELL! More than anything in this world that's what I want.

I've had no words. No words to type. No words to say. No inspiration to share. No guidance to give. I didn't want to be told there was a purpose for all this. I didn't want to hear it was all going to be better. Not that all of your well wishes weren't appreciated so much but I just wanted to scream "WHEN?! WHEN IS IT GOING TO BE BETTER!"

I'm doing OK now. Not fully but a little better. The pain easing up has helped a lot. To say it's been hard would be a drastic understatement but the fighter in me is rising again. I can't say thank you enough for all your wonderful words of encouragement, thoughts and especially prayers. I don't always respond, there are days I just can't, but they don't go unrecognized or unread and they do touch me tremendously. Please keep them coming and pray for answers!

As of now, there is no death sentence but this tumor chick definitely feels like she's fighting for her life! A life without pain, a life without tumors...a simple life.

Fasting for Francis........

2010-06-02T20:31:00.003-05:00

Hi Everyone it's Lois again :) This Sunday we are going to be Fasting for Francis (and her hubby & boys)! I wanted to invite everyone to join us. If you are not familiar with fasting or would like more info, here is a link to our church's website that explains fasting. One of the greatest things about fasting is that any denomination can do it. We (her family) are putting all our faith into this fast and we know that we will see miracles happen again! Thank you again (and again) for all of your prayers and love!!

Oh I'm Sick of These Types of Days

2010-05-22T03:22:00.002-05:00

Tuesday, 18th of May 2010

It's my beautiful nieces birthday today, she's turning four and having a big girl party at the park. She was on my mind most of the day. I knew she was getting a bike this year and I yearned to be there to see her open it. I called my sister to see how the preparations were going after a quick run down she immediately asked had I heard anything yet. I told her that had to be good news, I mean my gosh the last time I received a call in less that 24hrs about the brain tumor. I assured her that I would just run up to the hospital and get the images and report myself just to put us all at ease. I have to wonder now are these decisions ever thought out? Evidently I just act.

A few minutes later I picked up Bray and headed over to the hospital to get all the info that I knew would give me a clean bill of health (at least as far as the spine goes) Robert works at the hospital and was on break so he sat with the kids while I ran in. In retrospect this was not a good idea. It's like they say hind sight is 20/20. I got the discs and the report and was walking back out to the car, I glanced down at the papers and saw words that were way too familiar. FINDINGS. Written across the very top, detailing how they had immediately forwarded to my doctor for immediate attention. Right there in the hallway I felt my knees weaken. I couldn't breathe. I was taking in air but it simply didn't feel as though my lungs were filling up. The tears were, once again, immediate. Luckily it was a ball cap kind of day and that shielded a lot of my panic and terror from public view. I had to stop once I got around the corner from the vehicle, moments after receiving a huge blow I had to suck it up. My kids were in the car (with my husband) waiting for my return. They could not see me like this. I picked up my cell and called Roberts and explained that I needed a few minutes that it wasn't good. I once again heard that audible gasp for air and a choked down sob. He then had to suck it up. He was stuck with the kids. His coworkers found me weak and pale they went and got Robert and stood with the kids so we could have a few minutes.

It was worse than we could have ever thought. Worse case scenario we thought we were looking a spinal meningioma, which would have been terrible in it's own right. But I know meningiomas, I am well researched, prepared, I know the course of treatment and I could be ready to battle that. I couldn't have been more wrong. This tumor is outside the spinal cord and inside the vertebrae of T3. That's right it's in the bone pressing on the spinal cord.

The radiologist diagnosises it as the rarest type of bone tumors. Upon further research I found that when it does occur it's usually in long bones such as legs, feet, and ribs. The few cases that have been found in vertebrae are so rare and have a significant increased chance to be malignant or cancerous.

I cannot even begin to describe the devastation I felt on this day, it surpasses all. It may even surpass D-Day #1. May 18th 2010 my second D-Day. I have yet to ask why but I'd be lying if I said I didn't ask how. How in the world do I have another seemly different tumor already. There are so many unanswered questions. I did by the way double check with my parents to make sure they didn't drop me in a vat of radiological goo or perhaps adopt me from a country where I had been dropped of at a nuclear waste dump but they quickly assured me that neither was true :) So it really is just 'What the hell'. How could this happen.

It feels different. I can't explain or justify that statement but to just say it feels different and not in a good way. I have NOT lost my optimism, it is still intact but I am not as strong as I was pre-brain surgery. I was just really getting into successful recovery. That concerns me. I was physically prepared for Egore. I was training prior to diagnosis, running, biking, kayaking and hiking. Things that I have only begun to be able to resume.

There's no other way to explain this day but as simple one of the saddest I have ever experienced. I'm 31yrs and 4days old. 31yrs old. How does this happen? Somehow my world managed to slip out from under me...again, but more harsh, so much more cruel. There are no words, there simply are none that could ever express the pain I felt on this day.

Robert obviously once again left work. There was no way I could possibly drive my children and myself home. I had wiped away as many tears as possible to hopefully shield the kids but my mind was shot. I was in auto pilot mode. It felt impossible to think or make rational decisions. I texted my 'essentials' this time. I know, I know that's harsh but I truly couldn't do it. I couldn't even begin the utter the words. Another mass...another battle.

Sometime on the way home Bray stated simply, "There's another one, isn't there". I couldn't help but die a little inside for my child and his unfortunate insight into a world I wish he didn't know. He reached out and held my hand without trying to get comfort from me but trying to give me comfort. How I got so lucky and blessed to have this child I have no idea, but in SO many ways he rocks! I tell him that there is and try to reassure him that we will battle this one just like the other. His only question is "Will this one be as bad". I wanted to tell him that this one was going to be a piece of cake. Not for myself, but for him. But I am no longer naive. I know too much, I know that this tumor world SUCKS!

The rest of the evening was spent in disbelief. Homework, dinner, showers and bed. The tasks seemed so mundane compared to the news we'd just been handed but at the very least kept me doing something. I couldn't even bring myself to call the Mayo yet. That would make it a little too real for that night. Complete reality could wait for the next day.

Could this be reality? This Brain Tumor Chick has yet another tumor!

And So This Journey Begins Again

2010-05-22T03:02:00.002-05:00

Monday, 17th of May 2010

It's three days after my 31st Birthday and I find myself once again having an MRI done. This time it's the spine they are concentrating on. My particular kind of brain tumor feeds or grows of the Meninges or covering of the Brain and Spinal Cord so once you have one tumor you're at considerable risk for another in any area that has Meninges.

Having said that I've had pretty severe neck/back pain for some years but it only increases gradually and so your body just adjusts. It's never really slowed me down. Once the Brain Tumor was discovered in my naive mind I lumped all that pain together, the head and the neck. Surely a massive brain tumor can do all that ;) When the migraines slowly left after the brain surgery I knew that the neck pain wasn't far behind so I never gave it much more thought...that is until it hurt.

When, eventually, I didn't have a whole lot of feeling in my left hand, I figured it might just warrant a trip to the doctor. Hey I have my limits ;) Basically he said he thought it was an injury but (oh how I'm beginning to hate those buts) due to my history (aka. Egore the brain tumor) let's get an MRI.

I guess I didn't learn a whole lot from the first go around because once again I waited a couple of weeks to have it done. Seriously what is up with that. I cancelled a couple of times because the timing wasn't convenient, another time because I was sick and almost didn't go today. But I did. I was on the table, on the MRI tube table people for 3hrs. Take it from someone who's had umpteen dozen (yes I just said umpteen dozen, that's a lot, for those who don't know :) MRI's that is WAY too long. Did it alert me...heck no...I just thought those techs had NO clue what they were doing. I was more distressed about not being on time to pick Bray up from school. Didn't give it a whole lot more thought. Sure I was nervous, who wouldn't be, this road is altogether too familiar. To strike twice though, what are the odds of that, within a six month period. I wasn't too worked up over it.

This Brain Tumor Chick couldn't have been more wrong :(

Francis is Super Mom!!

2010-05-10T10:23:00.003-05:00

Click on this link to see Francis the Super Mom!! Such a great story, thank you to WJHG for doing this about Frannie!! She is so deserving of this!! So great to see her, Robert and the boys, I wanted to kiss my computer screen. They are just so cute. :) Congrats to Bray and his wonderful essay. Very proud of you buddy!!

Lois

Thirty-Year Old 'Super Mom' Battles Brain Tumor

**Updated: So the link right above is to the written story, for the video you have to go www.wjhg.com and it's on the right hand side under the "Birthday Club" banner**

A Whole Lot of Thanks from the Brain Tumor Chick!

2010-05-03T21:23:00.003-05:00

For the last six months (can you believe it's been six months) I have been navigating through my very own individual minefield. Map? Oh no that would make it WAY too easy...there is no map, no directions, no guide, just me, my family and this brain tumor world. But ultimately it's my battle, not something that even my family can fight for me. The terrain...it's unruly and brutal. This is easily the hardest journey of my life. And that may be the understatement of the decade ;) This very well may be 'the' journey of my life as I am constantly reminded that I will battle regrowth and the very likely potential for more tumors for the rest of my life. At this very moment my doctors and I are keeping a close eye on several spots that could be new tumors or tumor cells. Like I said this is by and far the hardest thing I've ever had to do.

I have recently been reminded that while this is a one-woman brain tumor battle I have an army of supporters routing me on. I cannot begin to explain or express the vast amount of sheer appreciation for the 'love' that has been shown on mine and my families behalf. I call it love because that is all that it could be. Anything less and all that has been accomplished wouldn't have been even a possibility.

The craft-fair...WOW! It is the only word that comes to mind. I can't tell you, all of you that participated (whether you bought or made crafts) how much you have helped me and my cause. The expense of a brain tumor is massive. Not only do we have the actual medical bills but the traveling, gas, food, lodging expenses of seeing my doctors as well. It is an ever-growing debt. I return to Jacksonville to the Mayo Clinic every three months to watch (and it seems like wait) for the tumor to return. I have an MRI and blood work done and anything else that needs to be addressed. Not only are there the medical bills but all of the travelling expenses to go along with that. To top all of that off I have more than a 60% chance a growing another brain tumor, which would involve another brain surgery. All of that does not even include the first surgery. It is immense to say the least and it really hasn't even begun. I'm not telling you all these yucky facts to paint a sob story. I tell you all this only because you all have been overwhelmingly generous with both your time and your wallets and I think it's only fair to know where all of that is going. What it is supporting. Thank you seems so meaningless so flighty but it is what I'm saying. Thank you, thank you, and thank you. You may never know how much you have effected me and my family but please know that you have.

They say there is always a silver lining. I'm not so sure that I buy into that idea. I have yet to find the silver lining of a brain tumor, but (I know there's always a but) I have found some things that I am very thankful for. I'm thankful for the reconnection's I have made with old friends that I had lost contact with. Life gets busy and things get lost along the way. You know who you are and I love you all! Looking back I don't know how I ever survived life without you. You have become an essential part of my life and it feels as if we never lost touch. We picked up almost right where we left off and I couldn't be more thankful.

I am so incredibly thankful for my family. My husband who has taken his fair share and continues to pick up the pieces of this ordeal. He never loses faith in me or our little family and I couldn't have custom ordered a better husband and father. My family, specifically my sisters and my Mom and Dad. You've held me up. You have surrounded me, each of you in your own specific ways. You've done all the things that I either could not or simply couldn't bring myself to do. You've slapped me into awareness and consoled more than your fair share. My in laws, uncles, aunts and Nanny. You've stepped in countless times. You've helped with the kids...you've kept me sane...you've done so much more than your part, so much more than I could have ever asked. My friends who have stood by and not wavered. It's true what they say, wait till the hard times and you will see who your true friends are. I have unfortunately have had some friends that have chosen not to ride this part of the road with me. In all honesty, who can blame them. I might would run from all this brain tumor crap if given the chance. It's an ugly thing, it is so not pretty. It's horrific and terrifying. It's not fun or exciting or even interesting. I now know the definition of a fair weather friend and that's ok too. The cool thing is, is that I now also know who's in it for the long haul with me and let me be the first to say, that is commitment people ;)

Lastly but certainly not least my kids. My rockin' awesome, unbelievable, coolest kids ever. I have spared them the ugliness of all this as much as possible. But let's face it, they have seen so much more than someone their age should. They are troopers. They have been juggled from home to home, scared, had understanding way beyond their years and have been both kind and selfless. All things that you rarely see in a 9yr old and 3yr old. This brain tumor thing is very unfair to me but even more so for them. Their life should only be consumed with kid things but that is not their lot and they have handled it like a champ. My son Bray recently submitted an essay to WJHG TV for Mother's Day and why he felt like his mom is a 'Super Mom'. I had no idea and that's why this morning when I got a call from a friend to tell me I had won I was in complete shock. Me 'Super Mom'?! I feel so far from that. I have had to spend so much time focusing on things other than my kids that this award seems so unlikely. But here it is...the WJHG winning essay for 'Super Mom of the Year'.

My mom is unbelievable. She's a stay-at-home mom and works SO hard. I go to Cherry Street Elementary and my mom is always there. She volunteers for anything they need help with. Whether it's copying office stuff or helping in the classrooms or planning parties she will help with anything! What really makes my mom special this year is that she is recovering from major brain surgery! She'd been having horrible headaches for about 2yrs but mostly hid them so we wouldn't know how bad she felt. When she went to the doctor we found out she had a little bigger than a golf ball size brain tumor. We were all very upset. My mom though, she stayed so positive. The very next day she was sewing Halloween costumes and making the best of things. Soon after we found out about the brain tumor she began having small seizures, she always made sure that we didn't have to see any of the bad stuff. She made a blog for my brother and I to read when we're a little older. It's of her diary entries so that just in case she didn't make it we would one day know how hard she fought to stay with us. I've only read some of it (I'm not old enough yet) and she is so strong. It makes me love her even more. She had surgery November 30th 2009 and has had a hard time recovering but she once again has not let that stop her. She has stayed positive and made sure my brother, myself and my dad haven't gone without. My mom has shown that she is my hero. She constantly shows all of us how much she loves us even through all that she's been through. This year I almost lost my mom but she stuck around for us and showed us how to fight hard with dignity and that's why she is the best mom ever. I love her so much! Her blog with her diary entries is www.mybrainegore.blogspot.com. Read it and you will see how wonderful she is!

Thank you

Bray Spann

This kid of mine is the unbelievable one. How awesome is that?! Now since we don't allow Bray to get on the computer alone I know he had a little help (Thanks Robert). I could not have had a better day than to learn this is what my son feels. I will treasure this forever. WJHG gave us a beautiful framed Paul Brent picture, a gift certificate to a local seafood restaurant and a gift certificate to a florist. Again...WOW!

It is safe to say Mother's Day came early for this Brain Tumor Chick!

The God's Honest Truth!

2010-04-22T09:40:00.003-05:00

The honest to God truth!? When I began this journey with my pen and journal in hand and massive brain tumor in my head I committed to telling the honest to God truth. I committed to take you all along on my journey where ever it may take me. I committed to harsh realities, to posts that were so hard to write let alone read, to make this my record...my words...my experience. At the time this all began, I must admit I never imagined my words becoming a blog. Harsh as it may seem I imagined dying on the operating table. I imagined my brain tumor winning. It was inevitable to me. The tumor was huge. I couldn't comprehend how my brain could possibly survive that. Prepare for the worst and hope for the best. I guess I sort of adopted that. I thought these words would be read long after I had become only a dusty memory by family. When I was swimming with the fishies, so to speak. When faced with such harsh realities and not knowing the prognosis there were so many things I wanted to say, so many things that I wanted my children to know. I wanted there to be a record of my experience so that if all that I imagined came to pass, one day when they were older they would understand how very hard their mother fought to stay with them. And I wanted to show them I fought with grace and dignity and with everything in my being.

After my journal entries became a blog this record changed in my mind. It became a peek into my brain tumor world. A peek into what I was going through and what I would go through. It was a way for me to ‘talk’ about it without having to ‘talk’ about it.

I have a hard time admitting when things are wrong. For the two and half years I suffered with the EXTREME pain of Egore, I will have to say, no-one was the wiser. Every once in a while, when I got caught in gripping pain I just pushed it off as merely 'sinuses'. Even when it became everyday, no-one knew. I hid it all. Not by some nobility or strength...just simply not wanting to be a whiner. I didn't want to become that. I didn't want to get left behind because I didn't feel well. And I definitely didn't want to be coddled. I was simply way too busy experiencing raising my beautiful children and exploring our beautiful world together to acknowledge a stupid migraine. Why would I want to get in the way of life. In all honesty it didn't even register that something was wrong for a very long time...I guess the lying to myself worked well too.

My sisters could tell. The doctors described me as being 'dumbed down'. Yes that's right they said it right in front of me...I was taken aback. I wanted to scream..."You do realize that I can hear you, and that's really not very nice". As much as I hated the term, it made sense. I found myself unable to find words. I would lose concentration VERY easily. My sisters say that we would be gabbing on the phone and then all of the sudden mid-conversation that would be it for me. Mid-sentence I would have no idea what was going on. It was all very surreal and very very strange.

I was worried about that going into surgery (amongst oh so many other things). I worked very hard for my 'smarts', I definitely didn't want to remain 'dumbed down'. Like everything else it could really only go two ways...really good or really bad :) I was very lucky and blessed that in that respect it went really good and I'm happy to report that I have all my 'smarts' back. I no longer trail off during conversations and no longer feel like I can't hold concentration.

So here's the God's honest truth...here's what I've been avoiding telling anyone. I am physically changed. This was the thing (other than death of course) that I feared the most. I have ALWAYS been a really active girl. I danced all of my life and have never been without a gym membership. The few years of my life that I wasn’t quite as active were, looking back, the most miserable. It is a part of me, of who I am. It's never really been a vanity issue for me (although I have enjoyed those benefits of staying fit) it's just simply been a way of life. I biked, I kayaked, I hiked...you name it if it was active I was in. Even now it's so hard to write those things in a past tense. Although I thought I prepared myself for possible changes I never imagined I would be unable to do the things I loved. The bottom line is, for the past several months, that has been my reality.

I've had so many questions about how I am post-surgery and while I haven't intentionally lied it's been SO much easier to just give the basic answer. "I'm doing well, getting a little better everyday". How I wished that were true. I figured that's what people wanted to hear. Did they really want to know the reality of how difficult it has been, about how difficult it continues to be...hell, I don't even want to know the reality of difficult it has been and still is.

So it's only natural when people found out I was in physical therapy there was a lot of confusion. "What I thought you were OK?" Nope, nope I'm not.

I have lost the ability to use my left arm. There it is. The truth sometimes just sucks.

I can move my left arm (it doesn't lay limp), I can grab things and anything lighter than say my cell phone and I'm good. Anything heavier than that and I'm in A LOT of pain. If you were to see me in a typical situation you would never know it. That's how I got away with hiding things, once again. I wanted to be well. I wanted to be well with everything inside me. I wanted more than anything to get back to normal. Heard of 'fake it till you make it'? I think that maybe that's become my mantra.

The pain is in my shoulder, neck and mostly in the side of my face. That would be why I have to have physical therapy on the side of my face. Evidently the nerves and muscles that had to be cut to remove the tumor are all somehow or another connected to my arm...or better yet my arm and shoulder affect those muscles. As well as working on the side of my face I work strenuously to strengthen my arm. It took a while to figure all this out. In the beginning, right after surgery, my entire head and face hurt so bad it all blended together. It wasn't until the rest of my head began to heal and be less painful that the realization that the excruciating pain I was still feeling was taking place only when I used my arm. That was a sickening realization.

It is a part of my journey that I have hated the most. I rarely allowed myself to become angered about Egore. There were those moments, but I kept them few and far between. But this, this arm has angered me, it’s saddened me, and to be completely honest I’ve caught myself wondering why. Why in the world would I be challenged in this way…was Egore not enough. The pain that I already endured from him not enough. Evidently not. Evidently there was more I needed to learn.

Physical therapy is one of the hardest things I’ve ever done. I know that sounds silly but let me explain. The exercises, I can handle, I welcome the burn of knowing that I am strengthening muscles. What I didn’t welcome was being in so much pain that most days I couldn’t even take care of my children (big thanks to Nana, Tanis, and Nanny for stepping in) and to top it off the pain lasted on average for about 24hrs. and then it would be time to go back to PT for more. I was seriously like “what the hell”! It was hard knowing what was going to happen was going to be SO horrible every single time and having to gut it up anyway. My limits for gutting up were pushed. It really was devastating.

The pain continued in that way for the first 4 weeks of PT. That’s right people I said FOUR WEEKS! My spirit was heavy to say the least. I was worn. Egore was wearing on me in a big way! The pain was just more than I can even describe and no amount of pain meds seemed to take that away. I was sinking and fast. You have an evaluation with your therapist every 3 weeks where she/he looks at your progress and you decided whether to continue with therapy. I so wanted to scream…”I’m out of here lady” but I knew that wasn’t the answer. So very grudgingly I said “Yes we’ll continue”. She was great. She tried her best to keep me looking forward to recovery rather than focusing on the present because the present was very bleak.

I FINALLY turned the corner around week 5. HALLE-FREAKING-LUJAH! I don’t know how much more I could have taken. It slowly became less painful. It was like a switch had been pulled and my therapist and I really started to make progress. I think it was a hallelujah moment for her too. I think she was a little tired of inflicting the pain. I wish I’d know where that stinking switch was all that time, because trust me I would have done most ANYTHING to be done with the pain. It just could not be my reality, I would not accept it.

In the last few days I have finished PT. She called it my graduation…which I loved. It gave the sense of importance to the event that I thought it deserved. I still struggle. My left arm is something I continue to have to work on, to strengthen and to be pain free with. I use bands to strengthen and improve my range of motion. This, just like Egore, will unfortunately be a very long journey.

I’m learning. I’m enduring. I’m surviving what no one should ever be asked to survive. Best of all I feel like I’m living a little now too. I’ve said it before and I will say it again…I WILL BEAT THIS! Egore will not win.

The God’s Honest Truth was hard to say out loud (or type) but I felt like I wasn’t being true the journey. To share it all. That’s my promise from here on out…Always the God’s honest truth.

2010-04-12T23:54:00.002-05:00

Ok guys, it's finally time for the craft fair!!!!!!

Starting this Thursday, April 15th we will have 140 items for sale on this website:

http://www.etsy.com/shop/haleyuns

Items range from $3 and up! Here are just a few items we have: A photo session from the lovely Tori Piercy, Jewelry, tons of amazing crocheted items, scrabble tile necklaces, I-spy childrens bags, hair clips for little girls, appliqued onesies, blankets, travel holders for your curling iron/flat iron, scarfs and a whole lot more!

Please forward this info to your family and friends through your blog, email, facebook, carrier pidgeon, whatever! :) Spread the word!

Thanks,

Lois

**On a side note, a sincere, heartfelt thank you to everyone who has prayed for my sister and our entire family. We really have felt your prayers and are so grateful for them**

CRAFT FAIR FOR FRANCIS

2010-03-25T21:56:00.001-05:00

The Craft Fair is coming up quick! It's going to be April 15th and run for a week on my (Lois') Etsy site. Please leave a comment if you are donating to the sale, I need to send you some information. Thanks!!

*exact website is coming soon*

Life in Construction Land with a Brain Tumor Chick

2010-02-22T16:06:00.006-06:00

So I'm thinking that we have completely established that brain tumors change your life in more ways than one :) Pre-brain tumor there were big plans to add onto and remodel our itty bitty little house. This was the 2nd attempt at such. We had our plans drawn up, we had made all the big decisions and BAM brain tumor land hit. So after all that we've been through we have made the mature, reasonable, tragic and heart wrenching decision to put such plans on hold till we find out what old Egore is going to do next. So after I got off the floor from kicking and screaming (just kidding but I wanted to) I decided that there were a few things I could do in the meantime to make the house a little more 'livable' that would not break the 'Egore' bank! I swear even after his extraction he rules our life :)

My first idea that I put into action was to swap rooms with my kids. My room is larger and lets face it...I have no cars to play with and no GI Joe men to spread out everywhere so since they are now sharing a room I would give them the larger room and we would take the smaller. I say that this is a bright idea only because Robert just painted the boys room a very 'boyish' grey at my request about 6 months ago. If you've ever been to my house you understand that painting a room is not just painting a room. We have solid pine paneled walls that you will see in the pics that follow. There is detail work between each panel. It's about a 75 yr old house that I really do love but the original owners got the bright idea that staining all the wood in the house cherry red (including the hardwood floors) was a WONDERFUL idea! So literally after Robert and I got married and I moved in, EVERYTHING from the walls to the floor was CHERRY RED! One word...YUCKO. He thought it looked very 'beach shack'...hilarious! It was more like 'dungeon shack'...really. One of these days I will get brave and post pics of our old room that I am about to paint for the boys so that you can fully understand what I'm talking about. Anyway, I had him paint the boys room 6 mos ago. That entails sanding the solid pine walls, priming them, caulking any rough spots in the pine (knots and such) priming again and then finally the paint which you first must apply with a brush to 'properly' get into all the grooves of the panelling. It needless to say, is no simple task! So the thought of redoing it was a little crazy! :) Did I mention I just had brain surgery :) But I could not live in a very boyish painted light grey room...that was certainly not suitable to my healing needs :) he he!

So I got the GREAT idea that although I am still recovering I'm going to re-paint the boys old room before moving into it, a more pleasant, little bit girly, color...soft aqua! Yes I said soft aqua. It's my quirky fun loving, truly beach shack (not dungeon shack) style! So...without any further ado....I finished it! Yes it took me like 2 weeks OK maybe 3 weeks of off and on working(I still can't use my arms a whole lot without bothering that muscle on the side of my head, so it makes perfect sense for me to painting a room :) but I did it. And it's beautiful! It is the perfect shade and very relaxing for my 'healing needs'.

And yes I painted the hardwood floors too. Most of you can pick your jaws up off the ground now :) I really did it. Most would not like that, me on the other hand, love it. The floors were damaged from a few stints of carpet over it and considering that we intend to add on in a few years, depending on old Egore, and replace all the flooring with new hardwood that will flow throughout the house it was simply too much work to completely restore these. So I decided to do something fun with them that I would probably never have the opportunity to do again. I really do love it. I like the scratches and scuffs that come with it over time.

I'm almost all moved in to my new room and taking extra care to make it extra organized. You just never know how organized you need to be until you spend a lot of time away or have major surgery, it really helps when others are able to find the things needed! :) Somehow they didn't love the hide and seek game :) I can't take too long because...I'm not going to lie...my living room is filled with the boy's stuff until we get my old room cleaned out. Hoping to have that remedied by the weekend. Scratch that...NEED to have that remedied by the weekend in order to preserve all sanity in the house :)

Now I have to start on the boys 'new' room...my 'old' room. That is going to take a little longer! It has not been recently painted so all the prep work will have to be done. I think I will enlist help on this one! I don't know...I start Physical Therapy for that muscle on Thursday so who knows, maybe painting can be incorporated into my therapy :)

Physical Therapy, aside from the ability to do more painting, is exciting to get started on. Just one more adventure in the recovery process. Anxious to get it going and get done and feel 100%! The muscle that's giving me grief runs along the edge of my face. It's kind of comical to think of getting PT on my face. On Thursday I get an evaluation...of my face...here's hoping I pass that one :)

FRANNIE'S CRAFT FAIR!!

2010-02-03T17:46:00.001-06:00

Hi Everyone! It's Lois, the little sis.

Well, it's been a long time coming but I have finally set a date for our "CRAFT FAIR" we are having on APRIL 15th! We have a little over 2 months to prepare! If you would like to submit something, please email me at haleyuns@gmail.com or leave a comment. Any craft big or small will be appreciated and help!

Here are some photos from her 1 month checkup at the Mayo Clinic......

Francis and Her Surgeon

Francis telling Robert that the results came back BENIGN!

From the Diary of A Brain Tumor Chick

2010-01-16T18:46:00.010-06:00

Saturday, January 16th 2010-

The rain has fallen, the storm has passed, and at last the dust is finally starting to settle. I survived the surgery and even seem to be doing better with the recovery. Life is beginning to take hold again. Now is when the fun finally begins again. The everyday, run of the mill things that I have missed so much. The life that I have yearned to get back to. Everything is so much sweeter now and that includes fun. I'm thinking that should be part of the whole brain surgery deal :)

I didn't realize what a recluse I had become. I think it was part of my coping mechanism. That's what I'm going with anyway :) It wasn't a conscious decision I remember making, but it was made all the same. I simply did not want at any point to have to publicly admit the tumor was there, that it was real. At the time, I could not, in my mind, afford the luxury of admitting it was there, of acknowledging the truth, or being scared. I could not afford to face the enormity of it. I had only one option, and that had to be to press forward however I was able to. I guess for me that was a little bit of avoidance :) (Got that from psych. class) Not that I could completely avoid it, it was large and pressing on my brain :) I did my darndest (a Francis word) to though. I got pretty good at it too :) I did, what I had to do.

Life is pretty dang good now. (Pardon the slang) I have more energy and have been incredibly blessed with a new lease on life. No longer a recluse, I'm not even shy about the huge scar on my head anymore. The hair that was shaved is growing back. The stitches are gone. The scar is healing. I can even manage to go out without a hat on now if I apply the correct 'swoop' motion with my hair over that area :) And if it does show...it's ok. You won't catch me fretting over my battle scar. The swelling in my face is almost completely gone now too. So I'm feeling less and less like Jolly Old Saint Nick, which for me, is GREAT! After a little more time there won't be any viewable physical evidence of what has plagued my life for the last few months. These are huge accomplishments for this Brain Tumor Chick :)

When things are still and quiet I find myself feeling this area of my head and all the changes that have occurred. It's not the same, it doesn't feel the same. Thankfully I have thick hair so no one but me will ever be the wiser. It lumpy and uneven. You can tell where the skull was removed and then reapplied, which was a little more than half my head. In places the scar is more raised than others. Sometimes I simply walk past a mirror in my house with my hair pulled back and it catches my eye. I can't yet keep walking. I have to stop and examine it. I have to stop and see what changes have taken place that day. In a way it's getting to know my new head. It is, right now, a tumor-less head! That is something I now take a lot of inner pride in, it's something I survived and lived to tell about.

The getting back to normal part didn't come as easy as I thought. I am still me and find more of 'me' in myself everyday. But the day I got diagnosed I somehow instantly knew that life would never be the same. I could never be untumorfied (yes, that's right I made that word up). From that day forward I would be a Brain Tumor Chick. I've said many times before that this would never go away and I now believe that more than ever. I have, although, been pleasantly surprised by the change in outlook I have now. Maybe, just maybe Brain Tumor Chick isn't so bad. Maybe I can 'rock' this thing after all :)

Life goes on, the world keeps turning, and I too keep going. I can't say yet that there has been a day that I haven't thought about the tumor, about Egore. It's usually during my workout that it completely consumes my thoughts. It's then that I'm able to reflect on all that has happened, all that I've gone through and all that has changed. I can do that without tears now (most of the time). I definitely don't think of it in the same way. That too has changed. Fear no longer sweeps over me at the thought of it. Complete sadness no longer takes hold. I'm still not to the point that I'm thankful for Egore or the experience yet but I would say that we're at peace with each other, my brain and I :) If that makes any sense :)

So that's my progress so far :) I'm now ok with my huge scar, dented head (that you really can't see) and my brain and I are at peace with each other! This is my crazy Brain Tumor Chick Life...I love it!

From the Diary of a Brain Tumor Chick

2010-01-02T01:00:00.002-06:00

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!

From the Diary of a Brain Tumor Chick

2009-12-19T14:18:00.002-06:00

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!

Francis Update

2009-12-02T21:51:00.000-06:00

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!!

From the Diary of a Brain Tumor Chick

2009-11-29T23:55:00.002-06:00

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! :)

From the Diary of a Brain Tumor Chick

2009-11-27T23:40:00.002-06:00

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.

From the Diary of a Brain Tumor Chick

2009-11-25T17:25:00.002-06:00

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! :)

From the Diary of a Brain Tumor Chick

2009-11-18T00:55:00.002-06:00

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!

From the Diary of a Brain Tumor Chick

2009-11-14T22:43:00.005-06:00

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 on 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.

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!

From the Diary of a Brain Tumor Chick

2009-11-11T23:29:00.006-06:00

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

2009-11-11T00:09:00.004-06:00

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!

From the Diary of a Brain Tumor Chick

2009-11-10T18:26:00.004-06:00

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!

From the Diary of a Brain Tumor Chick

2009-11-08T22:11:00.004-06:00

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 cocoon...in 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

2009-11-08T22:03:00.006-06:00

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 avail...it 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!

From the Diary of a Brain Tumor Chick

2009-11-07T23:56:00.005-06:00

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 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 second I think this 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 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 :) Brock is at my lap, 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 little bigger then a golf ball size tumor on the left side of my brain. 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, "No Duh, Lady...you think".

She asks if I'm OK. I can tell that at this point she's rethinking my LABOR AND DELIVERY SCRUB TECH position (helping Doc's deliver babies) 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 wonder if he'll 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, have a brain tumor. This is emergency enough!

I call...by 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 1/2 yrs old) who's watching mommy cry and all I can think of is how could this happen.

Robert gets home and we cry for a while. I suggest he call his mom to watch Brock for the day so that we can get ourselves together. While he's meeting her I arrange for Bray to go home with friends from school. I can't face anything today, and this includes them. How do I them? What do I tell them? Am I going to leave them so young? These are all questions that would simply have to wait for another day.

While he's gone, delivering Brock to Nana, through my tears I make all my 'essential' phone calls. I decide that I'm going to go get LOTS of movies. Which is a perfectly sensible idea after being diagnosed with a brain tumor :) NOT! So I laid on the couch, watching several movies and tried to absorb this horrifying news. I couldn't tell you what movies I watched and if I saw them again I doubt they would even be familiar. My mind was somewhere else...in brain tumor land.

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 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 didn't make any phone calls and barely accepted any. 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

2009-11-07T23:40:00.009-06:00

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.

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

2009-11-06T20:34:00.002-06:00

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