Bad Day

I just finished my night time medications and stayed alert as possible so Alana and I could finish up our new Barbie movie. Yeah, it hurt a little, but I didn’t want to move. She was all in my arms and it was nice. I got to hold onto her all night and we just said our prayers. I didn’t say anything because I don’t really know what else to pray at this point. She said at least five times, “heal mom, that’s all we are asking you to do…” and that for tonight was all I could listen to. “Heal my mom.” I just find it dreadfully unfair that she even has to pray that, but that is how bad I am at the moment. I’m in a puddle of tears.

I’m cranky, agitated, annoyed, over everything, completely un-joyful and one hundred percent opposite of positive.  I don’t know where to find my good attitude, my courage, my joy and excitement for life. Scripture tucked away in my head for days like this has likely been radiated, I just cannot find it. I don’t want to be brave. I read the side effects for one of the precaution drugs she put me on, and I’ve cut it in half. Please pray I don’t have a seizure. Right now the risk of getting one compared to the way I feel on the medicine, isn’t worth me taking it. I feel like garbage. The daily radiation is a piece of cake, thank God that is easy; Sit up on the thing, get into position, beam away Scotty, smells like Bleach, and done. Yep, no melting vision, no pain, just another day at the cancer palace where I’m by far the youngest radiation patient. That’s encouraging. Apparently I get to talk to the doctor every Thursday and today was our day. We didn’t get very far because I cried every 3 seconds.

We talked a lot about my irratibility. I cried all day. I can’t stop. I cannot stop thinking about two things. Either A I remember that EVERY day is special, and I have fun and make the best of it, even if I don’t make it to the end of the school year. And that I feel like takes its own source of energy to comprehend and make work. Or B I say screw every stat, every scared doctor face, every “thing” I know about LM and I go on a whim saying God is going to give me this miracle. The latter sounds better, I pray it EVERY day, but my confidence is so wavering. Down to my very core, my soul is hurting. Cancer has no right to do this. I am so angry I could scream and I just find it all very, very unfair. I know my family wouldn’t be the first to lose someone to this disease but I’m not sure any one of them understands how to handle it when it comes.

To be honest, I don’t think I’ll make it to the summer, which sucks because I very much plan to go to see the Grand Canyon.  I have my reasons of why I think this will end quickly, and I’m basically just waiting for someone to just say I’m going to die because at this point, lets move things along. I don’t have good skills in patience. Tomorrow I get my spine MRI I am really not looking forward to that. It will “change things” and no one has really enlightnened me to tell me how this changes things. Basically, they don’t want to see the LM in my spinal cord. But I looked at him and said, “you do realize its been in my spinal cord since the day they biopsied my spinal fluid right? We sat there and looked at them with the doctor back in October.” He didn’t answer to any of that. My back has been killing me. I know its in my spine, I don’t even have to pray it away, because it’s there and it hurts. I very much suppose all the doctors will talk like mad tomorrow and we will have some new plan. Maybe.

So, I’m left with another night of rest. I took a Xanax because I think it helps me sleep, but overall I am quite peaceful, I’m just so angry. There is this dark place inside my soul that literally wants to kick punch scream and cuss at everything and anything I have in my house. I need to throw plates from Goodwill! Like yesterday. I want to find my happy place. I want to know that even if our miracle isn’t answered, that we make it to just a couple of more fun places and plans we have to do. It feels like time is running out. I’m trying so hard at the same time to be strong. My kids know what its like to be sad, and Alana stared in my eyes tonight. She knows I’m scared without even saying it. I got the sweetest hug. Then I got a super sweet hug from Skip. I bought him a Hoodie today, and he really liked it.

I guess not knowing what you get from day to day is hard. I just want to not care so much. I want to be me, have fun, laugh at stupid jokes, and enjoy the days like no one before has enjoyed days. That is what we do. So I’m going to try. Tomorrow. I want to wake up differently. Tomorrow afternoon we are planning on going to Ellijay. I don’t care if we do absolutely nothing, I’m just hoping the quite calm air is enough. I’m tired of crying, I’m tired of being sad, I’m tired of my brain constantly going over what it means to have leptomeningeal carcinomatosis. I’m tired of being tired (A glorious side effect from radiation) Really, it makes life “painful.” The fact I could literally sleep for 24 hours a day is completely annoying. I dno’t even know how to nap!!

So that is my bad side. You guys are always being so awesome and telling me how I’ve encouraged you and your family in some way. Truthfully, that does encourage me. If God needs to use me, then I guess he is going to have to change a bunch of lives at the same time, because I don’t think we agreed on my life being wasted. Just do me a favor and pray with your kids. Enjoy life even when it doesn’t seem like it wants to be enjoyed. Hug your babies as much as possible, that goes for the big ones to, and remember that its okay to cry. I’m going to sign off for the night, thank you to all that are praying for me and this family. We do need a miracle, one would be amazing, someone may just have to “pray for my unbelief.”

XO