Taking a "break"

I'm tired. My body is beat up. My mind is fogged and seems overloaded. I haven't even had the strength to write an update after my day yesterday but I'm forcing myself to now so that my people can know what's going on. 

We drove out to UPenn yesterday afternoon to see my doctor. I had blood work done first which she gets right away it's very convenient. She walked right in the door and said, "what the hell?"  I didn't know what she was talking about at first, then realized she was talking about me. Ha. She was with her assistant and they both spent a good time with us, my doctor was very bothered by my hospital visit, the way my body was responding, my white blood counts are low, and she said it was unacceptable. My reaction to this injection medicine is not only dangerous but can't be tolerated like this. When you are on medication like this and your body is shutting down, you cannot continue. As my doctor she says its her goal not to have her patients feeling this way. My body is broken right now and they both felt I need time to recover. She wanted me to wait two weeks to take the next injection, which when I take again will be half the dose I was taking the last 2 weeks. I told her yesterday if she wanted me to take the shot today I would have said no. She confidently told me that at anytime I could reject the shot and she would be supportive of that decision, she also told me when I was feeling like a failure, that I am "heroic" in what I am doing right now. That was a huge encouragement to me, Dr. Schuchter is so awesome. She also wanted me to get right to the infusion room yesterday to pump my body full of fluids since my blood work was off and I was dehydrated and weak. We spent 2+ hours in the infusion area getting fluids. My body feels like it needs this everyday. With as much as I've been sleeping I can't drink enough water when I'm awake since I'm awake seriously 4 hours out of most 24 hour days. I never thought it possible to sleep this much and still feel tired. Exhausted moms and hard workers out there I hear you when you are thinking, man I could go for 20 hours of sleep! But don't be fooled, do you know how much life you miss when you sleep through most everyday? Oh the blessings of waking up with my babies smiling faces,  seeing them off to school and running home off the bus, playing with them and enjoying their smiles and life. I miss these things and it's only been a couple months since I've been fighting this cancer thing. Anyway, enjoy your napless days.... I'm wishing for enough energy to go a day without one. The grass isn't always greener haha, even with naps. 

How do I really feel about all this? They drug? Life on Sylatron? I don't feel. That's the problem I think. My doctor wants my quality I life to be about 80%, I think there's been not a day of 80% and many days I've been functioning at about 5%. It's no quality of life. Right now I want to quit, I do. I feel so weak, my body feels too broken to fight anything. I'm not sure how to dicern where to go from here.  The doctors say just don't think about it for a couple weeks. She said I'll have a good Thanksgiving and feel ok. I need to just enjoy that, it will prob take me a week to recover a bit and will then be thankful for a week of feeling semi normal. Whatever the heck normal is, there really is no such thing. My body just doesn't handle medicine well, it never has. And taking something like this is so hard and so serious. Maybe we can find a dose that works for me, maybe I will have to stop. I'm open to stopping now. I wanted to try and feel like I've failed. I've known this drug is hard and I  if you that have been on this for months you  are my heros. I do not know if that will be me. Whatver happens I'm trusting my doctor completely that we can go from this place and decide what is best for my body. There is not an alternative in drugs. I am carefully being watched and tested for a long time, many years, most likely the rest of my years. And being stage 3, there aren't too many options other than terrible interferon. Part of me feels like although you don't sit and wait for it to come back if I continue with this I continue to get weak. At any chance it comes back and I have to do more serious treatment my body would never be able to handle it in this condition. That thought is for sure in the back of my mind and has some serious weight to it. But anyway, I need to give way back to taking this all one day at a time and not trying to plan too much or think about what we will do next. For now it's for sure that I'm not taking the shot for 2 weeks. I will continue with the rest of my medicine and resting my body. In 2 weeks I will go back to upenn and have my blood work done and see the doctor. At that point we will take the next steps of this journey that I'm on. Keep praying for my spirits and for my body. Pray that over the next week I can recover a great deal and then have a week of feeling "good" (which is a relevant term these days). 

The whole way home last night we listened to worship music. Bethel radio on pandora is good. I tried to sing some and relax, poor Kev is much exhausted too working a lot and trying be with me. The music kept us awake and we made it home to see all our babies and tuck them in bed. That was the best part of my whole day. 

I will continue to tell my story the best way that I know how, through being authentic and as real as I can be. I know that my story is such a small piece of a great, much bigger, more beautiful story. I share this because in all seriousness I want my closest people, family and friends, to know my heart. I also share my story because of the real value I have recently learned in hearing other people's stories. Everyone has one, something worth listening to, and for most of us we are in some beautiful story that is just beginning. Maybe this can be an encouragement in a way for you to share part of yourself. Maybe to open up and share with someone what God is doing in your life. For a lot of us maybe I say this just for you to give your life a second look and realize that your story has the best author and it's not you.  You are living out a life picked out and designed perfectly for you for this moment and for some reason. I thought, before a couple months ago, that my story did not carry much value. Looking back right now at this moment I can see so clearly how every little part of my memory had been making me who I am and what my life's testimony has become. Would I have seen this so clearly without cancer? Probably no. Would you live your life different if cancer was your destiny tomorrow? Probably yes. It's not worth it to go back and think about those things, the worth is found in trusting God's hand in your story and living it from here on trusting him and his complete purpose and truly knowing the value of your life is not in your hands. 

I hope that as I continue to share my story and my journey that you will gain courage to start to share your own. Maybe it's just little things that you think make you who God created you to be and maybe it's a beautiful intriguing story of Christ's power that you do not know how to share because you don't know where to begin. Whatever it is, it's worth sharing. I feel like that's the best way to understand and learn about the real goodness of God. A story is long and involved with many different facets leading to a life long walk, it's not just one event that comes and makes us who we are...

"Leave outcomes up to me. Follow me wherever I lead, without worrying about how it will all turn out. Think of your life as an adventure, with me as your Guide and Companion. Live it in the now, concentrating on staying in step with me. When our part leads to a cliff, be willing to climb it with my help. When we come to a resting place, take time to be refreshed in my presence. Enjoy the rhythm of life lived close to me. You already know the ultimate destination of your journey: your entrance into heaven. So keep your focus on the path just before you, leaving outcomes up to me. " 

Jesus Calling

"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord"

 Psalm 27:13-14