Monday, March 30, 2009

Time to heal...or deal

I didn't have time to post Tuesday two weeks ago. It was a crazy day filled with all sorts of madness trying to fit everything in that needed to be done before we left on the band trip. Once we returned home, I just couldn't "talk" about the results we received about Keith's scans. I have been taking time to heal and/or deal with the news.

I'm still not sure how exactly to "feel" about things. For a while, I have been grieving. Grieving what? Everything. I have been filled with so much sadness. I have grieved the loss of time. I have grieved not getting good news again. I have simply grieved. There was one night when I could not sleep. I guess that was when everything began sinking in, and I was still so exhausted from the trip. I couldn't even pray. I could only cry out to God. I know that is a form a of prayer, but I was wanting to pray so badly, and all I could do was cry.

I'm not crying at night anymore. I guess I've dealt and that has made room for healing. Until today, I wasn't feeling like my world had tilted sideways again. Today has been a series of doubts and frustrations. We don't know anything about Nick's PET scans yet. We may not know anything until we get to Birmingham on Thursday. I do know that there are many doubts and fears that have surfaced. I'm having trouble letting go of them. I am afraid that we won't get good news. I'm afraid that the PTLD/lymphoma has changed, and is no longer viral driven. If that's the case, then it would mean that it has turned into a truer form of lymphoma. That opens up a whole new realm of possibilities. Possibilities that are unknown and scary.

I am also so frustrated by the educational system and how it deals with children who are special needs. We are meeting with Nick's IEP team at the end of the week to plan out his courses for high school. I am filled with such uncertainty about what to do and what is best for Nick. I am worried about making the wrong decision.

That is a tough one for me. In all of the years I have been Nick's advocate, I have always tried not to look back at the decisions I've had to make for Nick's care and education. The pathway is usually pretty clear. This time I just don't know. The worst part is whatever decisions Keith and I make for Nick can not be easily changed...if they can be changed at all. The decisions we make will affect him for the rest of his life. Nick's complicated medical issues and learning issues make it that much more difficult.

I am tired of always having to pass along bad news. I'm tired of trying to stay upbeat and positive. I'm tired of being sad. I know sometimes we all get tired. I guess this is my time. Today just hasn't been the best day. I'm figuring tomorrow will be some least I hope so. We will be getting our new central heat and air. Woohoo. I wish it didn't cost so much money though. We'll also have to see about having our car towed home tomorrow. It died earlier today and Keith hasn't called for a tow truck yet. Today was one of those days where I just wanted to pull the covers over my head and wait for it to pass.

I'm dreading Thursday. I don't feel strong enough to withstand bad news. I wish I did. I wish for so many things.

Thanks for listening to me ramble. I started not to post tonight, but I thought it might help me work through some of it.

Until next time,

Thursday, March 12, 2009

Too much

Why does it always seem like when one thing happens a dozen others happen right along with it?

Nick and I got back from Birmingham last week and I realized Monday night that I didn't update here. I am sorry for neglecting my blog. Nick's checkup with his oncologist went well I guess. I really think that the doctor is tired of waiting and watching. He kind of alluded to a theory that maybe Nick's cancer isn't viral driven anymore. That would not be good. That would mean that the PTLD has changed over to a "true" lymphoma. That would probably mean the harsher chemo to get him back into remission. I haven't said much and honestly I have tried not to think about it much, because we won't know anything until April 2.

Keith is having scans on Monday, March 16. I wish I could say that I wasn't worried, but I can't. I am worried. Keith has had this cough for so long. The oncologist thinks it could be one of the tumors in his lungs touching a cough receptor and that is making him cough. I don't see any way around the fact if that is the reason for the cough, then that means the cancer has probably grown. I am trying to let God handle this and not focus on my worries and fears, but that is hard to do! At least we will know on Tuesday. We are scheduled to meet with the PA for the results. We're fine with that. We love him.

We are all leaving for Orlando on Wednesday morning. I wish it were truly a pleasure trip, but the middle school band is going for a band competition. I am an "official" chaperon. Keith and Kacie are "tag-a-longs". The kids are so excited. I can't believe it's here already! We've been talking about this trip for almost a year. It just doesn't seem real yet. It will this weekend when I'm trying to get every one's stuff packed!

The other major that has happened lately is that our HVAC unit went out. We had noticed during the winter that it wasn't heating that well, but due to higher utility costs, we had turned our thermostat down. I thought I was just cold. Well, when it was so warm Monday and Keith having had chemo that day, we turned the A/C on. Keith gets so hot when he gets his chemo and he was miserable Monday. There was no cold air coming out when we turned it on. We had a repair guy come out and look at it. He gave us the bad news and an estimate. Keith and I were truly stunned at how much it is going to cost to replace our unit. We had three others come out today to give us an estimate. It is not looking much better! I joked that my checkbook is sobbing hysterically. I think maybe it's me instead.

I'm not going to ask "what else?" or "how much more?", because that has always acted like an invitation with me. I will say that I am ready for a break. It seems like if it isn't one thing, it is half a dozen others. I guess if we weren't under so much daily stress with Keith and Nick, then all this other wouldn't be quite as bad. However, we are under that daily stress, and even little things can seem like big things.

So, for today, I am saying it's too much! I'm not only giving it to God, but I'm throwing it up to him. I know he'll catch it and do better with it than I will. Don't take that picture the wrong way. I don't intend a mean spirited thing. I have in my mind the picture of a child standing outside throwing confetti, a balloon, leaves, etc up in the air and watching them fall. Only in my mind, I'm throwing all of these stressors up to God and they aren't falling back down on me. He is going to catch them and take care of them for me. I guess I am literally casting my cares upon the Lord.

I will try to post again Tuesday night after our visit with one of Keith's team.


Monday, March 2, 2009


I survived giving my testimony last night at church. I knew I would survive. I guess most of my unease was due to how emotional I get when I talk about some of the things that have happened through the years. I have gotten some positive feedback from fellow church members. I don't know if what I had to say helped anyone, but I hope so.

I did get emotional. A few times, I couldn't keep from it. I know that emotions are not a bad thing. I just have a hard time crying in front of people. I'm not a "pretty" cryer. My eyes and nose get all red. My face gets blotchy. I've always hated that. I have never been one of those women that cry gracefully. :) I noticed a girl at the school the other day who had a single tear slowly rolling down her cheek. No red nose or eyes, no blotchy cheeks. Just that tear. I never did find out what was wrong with her. Sorry, I took a side trip there.

I wish I could say that I have gotten some clarification on my other prayer request, but I haven't. If anything, it is more clouded than before. I thought I knew for certain what God wanted me to do, and now I'm just not sure anymore. Please keep praying. I'll try to continue to be still and listen.

There isn't much else going on right now. Keith had his treatment today. He isn't feeling too bad. Nick and I will be going to Birmingham on Thursday for another checkup. He'll have scans at the end of this month. Nick and I will also be traveling to Orlando, FL during spring break for a band competition. He is so excited. I remember how exciting those days were.

It just looks like we are going to continue to be busy. There will be at least a few days that are more difficult than others. Keith and Nick are both scheduled for scans in the next month. That is going to be tough. As a matter of fact, Keith will have scans done in two weeks. We will get the results the day before Nick and I leave for Orlando. I pray the news won't be bad. I hate the thought of leaving him only hours after finding out bad news.

Thank you for praying me through last night. I can't express what it meant to me.

Until next time!