Saturday, November 30, 2013

Four years and one word...THANKFUL!

It's been such a LONG time since I've posted on this site and I'm SUPER excited to share that for at least the last year it has simply been because I've been too busy LIVING.  And not just the breathe in and out, heart pumping kind of living but actually LIVING.  The past year has been the best yet in this journey.  It is still trying and sometimes VERY hard but so much better than before.  I'm playing catch up.  I can't seem to do or play enough.  There were so many years that those things weren't an option, and to be honest, didn't seem like they would ever be again that I am certainly trying to make up for lost time!

Let's catch up... last time we chatted I was in excruciating pain pretty much constantly.  My 'fix' I last spoke of, in fact, didn't work and very soon after I was back to pretty much constant, agonizing nerve pain. To add insult to injury, it seemed like every time I turned around there was more to add to my already overflowing plate of health problems.  Definitely to say that that was a rough time for me would be so much of a understatement.  I was trying to navigate alone with the mental attitude of "I got this" and just a bit of too much competitive spirit in me as well.  If I was going to have all these things wrong with me, if I had to lose so much of what made me, me... I was going to be the best at it!  I know, crazy thoughts from a brain tumor chick.  I was going to recover faster, better, and more efficiently then anyone had ever seen before.  In short, I was going to be the BEST brain tumor chick out there (I know more serious craziness).  When things were clearly not going my way and I continued to lose my battle to stay who I believed I was, I crashed... hard.  The blame (in my mind) rested squarely on my shoulders and that is an awful lot of weight to bear.  I should have been stronger, I should have done it better, I shouldn't have allowed these things to happen to me... as if I had absolutely anything to with any of it.  I mean, I couldn't even deal with the horrible pain I was in like I wanted to... I spiraled and all downhill.

I could no longer keep up the facade of a super bright and shining face in the midst of such tragedy.  I couldn't pretend to be taking this all in stride.  It wasn't what was expected of me from others, that was a weight I put squarely on myself.  I am solely to blame for such crazy thoughts.  I am a giver by nature. (Before you go thinking "wow, brag much?" I don't feel like that's a particularly good trait) I wanted everyone around me to be comfortable.  I wanted to make everything OK for others.  I found myself, in the beginning of this journey, consoling everyone around me, even while I fell apart on the inside.  Listening to everyone's version of how they 'just knew' why this had happened to me and how 'it was challenge I needed to have to better myself' was a special kind of trial.  By special, I mean pure hell.  I've said on many occasions that I was going to write a book on what NOT to say in these circumstances.  In all honesty, I know that most of these people that said these things and things like them meant no harm.  I know that it came from a place of goodness, belief systems, and also just the pure "What the crap does a person even say to this?".  However, at the time 'knowing' these things did not help the special part of hell I felt like I was in every time I got cornered into these conversations.  I smiled my biggest smile.  Told my standard answer, "Everything is going to be fine", and continued to listen because obviously they needed someone to talk to about MY PROBLEMS.  Why I felt like it was OK for that person to be me is a question I will never be able to answer with an answer that makes any kind of sense.  Outwardly smiling and acting 'fine' and inwardly screaming at the top of my lungs for someone, anyone to help me escape this hell that had become my life.

Finally, after a significant time of "what am I suppose to do now"?  I got myself up and walked into a therapists office.  BEST DECISION I THINK I'VE EVER MADE!  I know most people don't discuss such things and seriously, a year ago I would have been mortified if anyone knew but times are a changing and it's NOTHING I am embarrassed or ashamed of.  In fact, I'm pretty proud of it.  It was one of the hardest steps I've ever made... to admit I couldn't do this alone.  I couldn't push through my rock bottom.  That I hurt, both physically and mentally, and I didn't have the answer to fix any of it.  Lucky for me, I struck gold with my girl.  That's what I'll call her... my girl.  The first day I went in, I told her about the brain tumor and before I could even get to the rest of the story she was telling me how sorry she was and that she wished I hadn't waited so long to see her.  I, politely, told her I wasn't finished, that the brain tumor wasn't the 'end' of all that had happened to me.  She sat back and listened more.  After I went through each thing (diagnosis) that came next she would ask, "am I up to date now", I said "no there's more" and she continued to listen while I explained the sheer horror that had become my health and exactly where these diseases had taken me.   By the end of just telling her all that had happened to me, we were both sobbing.  Seriously, people I struck gold with her!  To say that she's helped me get back up would almost be insulting.  SO MUCH MORE!  I have a wonderful group of friends and family who are truly my support people and any one of them would have been more than happy to listen and I did try that but I was a part of their life, and while I spoke of my pain I could not think of anything other than how much this was hurting them...I couldn't stop myself from desperately wanting to help ANYONE, especially loved ones, to not hurt.  Self sacrificing... a very dangerous game.  My girl does not coddle, she does not give me lip service or tell me what I want to hear.  She tells me how it is, matter of fact, she bottom lines me. I've learned to love that.  I've learned that's what I needed, only by someone I couldn't be mad at for very long.  She calls me out on my wrongs and has helped me to become a new version of myself.  Not the same, it will never be the same, but good too.  I have managed to find me inside this torn up body, make choices that are mine, that I own, to make a life that I love and am so proud of.  It's like I'm living out loud and it feels good.  So, in turn, from my girl, I'm learning not to give lip service, to not tell people only what they want to hear, that it is perfectly OK to not be what everyone else wants for me but to figure out who I am and what I want.  Those decisions are not made easily and while I know that some of them have truly hurt loved's never good to live someone else's version of life.  If there's anything this journey has taught me it's that we only have one life... and at the end, whenever that end comes... wouldn't it be a shame to wish you had done it differently?!

"Lose your life and you'll find it.  I've lost my life.  Everything I've ever planned and dreamed for myself is gone.  Somehow, with it all gone, my life is emerging.  I don't know how the hell that works, it just does.  It's still a love story.  Love [of all kinds] still wins.  Love and redemption come in so many shades"  -author unknown

Tomorrow marks 4 YEARS!  Four years since I was a girl lying in a hospital bed (unconscious) and not having a CLUE about the ride my life was going to take.  I thought brain surgery was THE struggle and the battle, once I got that out of the way...the rest would be cake.  I have NEVER been so wrong.  If I could say one thing to that girl laying in that bed with a swelling brain and a brand new hole in her head it would be to... hang on, this is going to be a doosie!  A doosie, but so worth every ounce of work you're going to have to do to find that girl you were just a month ago.  My 'D' day has always been a struggle.  It's a tough day that is usually spent reflecting and trying to come to grips with what has happened.  October 29th 2009 was an awful day.  The worst kind.  October 29th 2013, however, passed without any recognition what's so ever.  I forgot!  I didn't even realize until several days later.  That was a pretty awesome first.  I was too busy living!  Who knew that would EVER happen?!  I certainly didn't!  November 30th will forever be a new birthday, a second chance on life, a gift of the best kind.  The gift to keep breathing.  The gift to emerge from surgery (in a hell of a lot of pain) and live another day.

This November 30th is bitter sweet.  It is all of the things I mentioned before but, ironically, just a few days ago I had a scan and received that dreaded call a few hours later.  My disease creates tumors in my brain, spine, eyes, and kidneys and while for at least 4 years I've had the brain and spine boxes checked, I've been fortunate in that my eyes and kidneys (although I have a separate and ever so lovely kidney disease from the brain surgery) have been clear of tumors.  Not so anymore.  There is a tumor now invading my right kidney.  I don't know what that means for my journey other than it's obviously ongoing.  I will likely see my Kidney specialist in Jacksonville very soon.  I have read the stats, I know what this has the potential to mean and in an effort to be completely honest, I'm scared as hell.  However, since it's also the holiday weekend, it is currently just a waiting game.  Worst part.  This could be a minor bump in my rosy new road or it could be a complete detour.  We will see.  We will hope.  I will be strong.  Not the self-sacrificing strong, not the competitive strong, but the get up first thing yesterday morning and call my girl for an ASAP appointment strong.  It's a new kind of strong for me... but I'm getting used to it. My girl and I will chat first thing Monday morning and she will not tell me what I want to hear, she will not coddle me, but she will get my head prepared to fight this new fight. That's what I need and that's what I'll get.

It's great to me that November 30th this year comes just a couple of days after Thanksgiving.   That's what I feel this year.  Just thankful.  Thankful for help.  Thankful for life.  Thankful for the parts of health I still have. Thankful because regardless of how hard my road has been there are others that have it so much worse.  Thankful because there are countless others who have fought my same battle and lost.  Thankful for the bright spots in an otherwise tough road.  This time I will once again be strong, I will smile through a good part of this process, but it will be because that's just who I am not who I feel I need to be.  I will also, I'm sure, have weak moments, sad times, and just pure hate going through any of this again and that's OK too because that is also who I am.  I'm good with that and for that I am most thankful!

***Side note: It would be very wrong for me to let you assume that while I thought I needed to travel this journey alone, I was in fact not alone in my fight.  There have always been family, friends, and friends that are family behind me, helping me, routing for me.  I don't tell much of their stories here simply because they are not mine to tell. I signed up to make my journey semi-public and in doing so I feel as if mine is the only story I have the right to tell.  Truth be told, it's the only story I know.  I cannot imagine what it's like to watch a loved one go through the fight I had to so I won't pretend that I do.

Monday, September 26, 2011

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

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 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 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 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'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. ;)

Wednesday, March 9, 2011

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

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 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 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 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 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 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 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.

Thursday, December 30, 2010

The depths of my despair...

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'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 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 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)

Wednesday, November 17, 2010

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

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.

Tuesday, August 24, 2010

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

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.

Wednesday, August 4, 2010

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

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 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'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 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, " 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!