Sunday, October 31, 2010

It is finished!

Football/marching season is over! It is finished! Yeah! I am so glad that this season is finally finished. It's been fun. It was not as different as I thought it might be from last year. I honestly could not remember a whole lot of last year's marching season. I know that I was deeply grieving. I was in the fog that comes from grief. I know I was extremely tired. I just didn't know if it was from the grief, the hectic schedule, or both.

It was both. I am absolutely exhausted. I have spent more of today in the bed than out. I have slept a lot today. I'm not too far away from going back to bed tonight. I do not feel good at all today. I hope it's just because I'm tired and not getting sick.

Friday night was the last football game of the season. Yesterday was the last marching competition of the season. The band did very well. All superior ratings, best in class band, and best overall band.

I am still a band geek, just all grown up. I love watching the bands compete. I do not remember being this worn out when I was doing this in high school.

What else is going on? Nick and I will be in Birmingham in about 12 hours. I do get really tired of going down there all the time. I wonder if there will ever come a day, before Nick is an adult and can take care of himself, that we will not have to go every month. I feel silly complaining about going. I know that there are families that have to be down there every single day. I know that it could be so much worse than what it is now. It has been so much worse than what it is now. I know that things can change for the worse with Nick with any visit.

I realized earlier that on November 28 we will have been going to Children's Hospital for 15 years. For some reason, which I'm sure that MLC will help me uncover, the realization of this is weighing heavily on me. I guess a part of it is that I thought (hoped) that once Nick was healed from the liver cancer and the liver transplant we wouldn't have to keep going back.

We had that for a little while. It seems like Keith's cancer diagnosis set off some kind of domino effect. We can't seem to be able to get out of the vicious cycle that we are in. On chemo, off chemo; in remission, out of remission. I wish we could just be off chemo, off of immune therapy, and in remission all at the same time.

I have realized that from the time Nick was diagnosed with the PTLD/lymphoma 5 years ago, we have been in this vicious cycle. Keith had already been sick for almost 2 years when Nick was diagnosed with the PTLD/lymphoma. They were both sick at the same time. Nick went into remission for a year, but during that time Keith was always on chemo. Keith never went into remission after that one time very early on. Nick was only in remission for a year. Nick has been out of remission for 3 years come January.

Granted, he hasn't had to go back on chemo yet, but he's still getting the IVIG. That is given in the chemo area of the oncology clinic. It is treated like a chemotherapy drug. I sit there looking at the kids getting chemo and I can't help but remember what those days are like. I'm sitting there watching the IV drip, drip, drip. I know it's not pumping poison into Nick to kill a cancer that is trying to kill him. I know he is getting the medicine to plug holes in his immune system that have been left from years of cancer, chemo, and transplant drugs. I know that for that day we are not there for chemo, but there are feelings that are EXACTLY the same.

I guess that is a big reason why I'm tired of going. I'm tired of feeling these same feelings. After all, it's been almost 15 years.

I did not mean to get off on that tangent. Not really sure where it came from, but it obviously needed to be let out.

I'm headed back to bed. Morning is going to come early, and the day will be exhausting.

Please pray for safe travels, good lab reports, no port problems, a good checkup, and another month without needing chemo.

Trying to remain

In His Grip!

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