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 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.

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?????

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 :)

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

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........

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

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

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!!

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!

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!

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.

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

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

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!!

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

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!