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!

From the Diary of a Brain Tumor Chick

Friday, January 1st 2010-

I can't believe I just typed 2010. It seems like just yesterday it was October. I can almost close my eyes and the last few months feel like a distant memory. Something that didn't really happen or happened in another life. It only takes a rub on my noggin' to realize there's no denying it. The large scar gives it away immediately. No denying that :)

Recovery has been tough. As I've said before, I'm not great at being patient. Just about the time I thought things were looking up (a little before Christmas) I slid back down the slope. My brain decided it was a good time to become inflamed and cause havoc. Multiple doctors visits and yet another round of antibiotics and steroids was enough to kill what little morale I had mustered up. But I am happy to report that it also soon passed and I once again began climbing that mountain of recovery.

I just had my one month check up in Jacksonville with my Neurosurgeon. I was nervous. I was finally going to get the final pathology report. I was going to find out whether this brain tumor, Egore, that invaded me also brought me cancer.

I had a list of questions to ask the doctor...mundane things like "When can I go back to the gym", "Which medications do I need to continue to take". No where on the list was 'Pathology report'. I completely forgot. It had consumed my thoughts so completely since I left the hospital and began recovery, I can't imagine how I didn't list it.

I diligently went down my list with Dr. Hanal. He looked at my incision. Pulled some stitches out that had not dissolved. Thanked him, even took a picture with him (for my record) and he began to walk out the door. My younger sister nudged me and mouthed the word "RESULTS?", like hello lady, and I quickly snapped back to reality. How could I forget that? It was what I most wanted to hear. I quickly asked and my wish, my prayers, and the prayers of so many others were answered. Dr. Hanal very casually turned and said, "Oh, completely benign". As casual as saying "I'll have cheese on that" or "No pickles please", he was confident and calm. He said it with surety that gave me such relief.

I was very aware of the fact that I was nervous and anxious about the results (obviously) but I had no idea how very much was weighing on that moment. I cannot express the amount of vast relief I immediately felt with just hearing those words. It's almost as if there was a shadow, a cloudy shadow following me around up until the point that those words were spoken. I wondered if for someone who gives news like this everyday, if Dr. Hanal could have any idea the power of what he was telling me. Everything, and I mean everything hinged on those results. In that very instant I can honestly say, I was a new woman. I felt like I had a whole new life.

After a few technicalities we left the Mayo Clinic. I reached the doors and the second I stepped out to the outdoors I screamed. Or maybe it was a yell. All I know is that it had to come out and it did. I think I may have scared the little valet man :) but I didn't care, it felt so good. I had confirmation, confirmation that I had a future! What a wonderful feeling that was and still is. It has yet to leave me. I hope it never does. I want to hang on to it for the rest of my very long life that I intend on having.

My news could not have come at a better time. Two days before a new year. I was only too glad to say goodbye to 2009 and hello to 2010. 2010, and every year after feels like a gift. It all could have been very different. It seems symbolic and right. It's not a gift that I have any intention to ever waste. Nor is it a gift that I will ever be able to accurately express to anyone who has not gone through something similar. I can't tell you how much I wish I could because it is so powerful.

I have to return to the Mayo Clinic (or the Mayo Spa as I've decided to call it...a clinic is somewhere you go when you are sick...and I am no longer sick :) every three months for an MRI for the next 2yrs. If there is no re-growth I will then move to every 6mos for 3yrs. If there is still no re-growth I will then move to once a year for the rest of my life. Daunting, to think that this will never 'really' go away. We will always be looking for Egore. The tumor is gone (I saw the pictures, they were beautiful) but tumor cells could remain. I already have to stop myself from thinking about the next MRI. Wondering if there will be growth. Wondering if I will ever have to endure another major brain surgery. It could easily consume me. I work each and everyday to not allow it to. It will take work, and getting used to but I am determined to hang onto the shear happiness I have now.

Things are progressing. I get more and more stamina everyday. Having my news I think makes me able to be a little more patient :) I actually played a little basketball with the boys today. I caught myself running after the ball, and it felt great. I didn't even find myself too winded and out of breath, which if you've seen me since the surgery you know that's an accomplishment itself :) I lost, but even that didn't matter. It was so fun.

Besides basketball we watched movies and football, wrestled and horseplayed, and I made dinner (black eyed peas, rice, turnips and cornbread) the traditional southern New Years dinner. It was an AWESOME day! An AMAZING day! One of the BEST days ever!

So here's to 2010! A year full of awesome, amazing, and best days! And most of all tumorless, Egore-less days!