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.
Monday, April 12, 2010
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:
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!
**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**
Posted by Auntie Lolo at 11:54 PM