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!

Thursday, October 28, 2010

Tired of...

Warning: This post is likely to be full of whining.

I am so tired in about every way I think is possible to be tired. I think that I am having some issues with the depression again. I am tired of dealing with this depression. I am tired of not feeling in control of my emotions or my state of mind. I am so tired of grieving too.

Yep, I said it. I am tired of grieving. I am tired of being a widow. I am tired of being a single parent. I am tired of playing this game or riding this ride. I am the person on the roller coaster screaming, "LET ME OFF! LET ME OFF! LET ME OFF!"

OK God! I am ready to get off this ride. I am ready for my life to resume normal. Oh yeah...I forgot that normal doesn't exist in my world. Okay then. I am ready for the storms to stop, for calm to reign, for the stress to ease, for healing to be complete.

Today I was finally able to get back to the gym. I took a step class and then I stayed for Bodyflow. I love Bodyflow. I don't do it very well, but I still love it. What is Bodyflow? It is a workout class that concentrates on Pilate's, Yoga, and Tai-Chi. I love, love, love this class. The last part of class is for relaxation. We focus on breathing and relaxing. One part of that exercise is to go to some place in your mind where you feel good. Some place where you are happy. When I have done this class before, my place has usually been the beach. Not today. The place that popped into my head was to be with Keith again.

That makes me feel like my mind is turning against me. I miss Keith so very much sometimes that I can not grasp the reality that he is truly gone. Between my mind automatically turning toward being with him when I can't and the PTSD (post traumatic stress disorder) forcing me to relive the trauma of Keith's illness and death, I feel like I am losing all sense of reason.

Yes, MLC knows. He is working with me on it. He also has some other treatment options in mind that we are discussing. One of the things we have already begun is trying to desensitize me to the traumatic memories that I keep reliving. I basically have to talk my way through which ever memory surfaces. I will have to keep talking about it until the memory no longer sets off the reaction. I was wiped out after my last session with MLC. The good news is I can tell a little bit of difference in the strength of the particular memory that we talked about. It's not a huge difference, but being able to see a little bit of an improvement is good.

Did I mention that I am tired?

I've been taking a lot of naps lately. Most everyone thinks that's great. I don't. In my "normal" self, I'm not a napper. I never have been unless I was sick, pregnant, or up all night with a sick one. (Started to say kid, but then I remembered that I have been up all night with Keith before.) I'm tired of feeling like I need naps. I'm tired of being tired.

I guess I can quit whining now. Don't say I didn't give you fair warning dear reader. I did.

Before I forget to mention it, Nick's Birmingham appointment for next Thursday has been moved to Monday. Nothing is wrong on our end. The doctor will not be in clinic on Thursday, so we got bumped up. No big deal. It's happened before. It will probably happen again.

I'm tired of going to Birmingham too.

Since I'm so tired, I'm signing off and going to bed.

Good night!

Tuesday, October 19, 2010


I haven't posted because I just don't know what to say. There seems to be so much going on and I don't even know where to start with it all. So this post will be ramblings about whatever comes to mind.

Let's see...Kacie had to get new glasses. Her vision has changed in just a year and now she needs to wear glasses full time. Not surprising since I wear glasses full time and have since I was a teen. Kacie is continuing to do well in school and loves dance. She has a pretty full schedule this year, but she seems to be handling it very well. We have had conversations about the importance of homework versus dance. I made it very clear that dance is a privilege not a requirement. She can't go to dance until her homework is finished. That's because she dances for 4 hours a week: two hours on Monday and two hours on Tuesday. She doesn't like the rule, but it carries weight. Kacie is really settling in with our new church family. She has a speaking part in the Christmas play. She likes getting to know her friends from school on a new and different level.

Nick began taking driver's ed this week. His time of becoming a licensed driver is drawing ever near. I know I'm not ready in so many ways, but I am ready in so many ways. He has been feeling well lately. I feel like I'm waiting for the shoe to drop. I know I need to not watch so close, but old habits die hard and Keith isn't here to be the voice of reason. Nick seems to be doing well in school too. He will begin taking some classes at the tech school next semester. He is really excited about this opportunity. I am too, just because it means a chance for him to learn something he loves. Nick is enjoying band. The football/marching season is quickly coming to a close. It has picked up steam during the past couple of weeks. We will be hitting it hard until the first of November.

Both kids are continuing to work their way through the grief from Keith's death. We all are. I continue with my counseling/therapy. I'm still on medication for the depression. I still have good days and bad days. Lately it seems like there are more bad days than good ones.

The second year after the death of your spouse is easier in many, many ways. It is also more difficult in many, many ways too. One thing that I have noticed is that I don't have as many bad days as I did during the first year. It seemed like every day had the potential to be a bad day during that first year. Now, the bad days are fewer, but when there is a bad day(s) it tends to be really intense.

I'm in a time of intensity right now. I'm not sure why. I do know that MLC (My Lovely Counselor) told me that this isn't unusual, especially for younger widows. I have to say that I will be glad when this time has passed. It's tough to be where I am now. There isn't a lot of good about it. I'm not going into detail about it simply because it's very personal and it is painful. I am trying hard not to fall into this pit that is full of feelings of abandonment and being damaged beyond repair.

I am still in school. I have two more classes to take before I transfer to Athens State to finish my degree. I have decided to continue at a slower pace for the time being. One of the classes I need isn't even being offered for the spring semester, so decision to only take one class again was a little easier. :-) I've done well so far. I hope I can continue to do so. I hope to be able to start at Athens in the fall of 2011. I don't know if I'll be able to finish in two years, but God knows the time frame and I am fully trusting in Him to make this happen.

That's about all the rambling I've got for tonight.

Until next time,

Thursday, October 7, 2010

Update on Nick 10/07/10

Nick had a checkup today in Birmingham. It snuck up on me this time. I didn't realize that I had not sent out a prayer request/update until we were on the road this morning.

The checkup went well. The oncologist didn't find anything during the physical exam and Nick's blood work all looked pretty good. The IGG level was low again at ~365. I don't remember the exact number. One good part is it has been 5 weeks since Nick received his last dose of IVIG. This may be a sign that the increased amounts of IVIG are doing some good, since Nick's number wasn't down in the 200s.

The oncologist's plan as far as the IGG problem is to continue to increase Nick's doses of IVIG until we reach a dose of 1 gram. That would pretty much replace all of the IGG that his body would make on it's own. Last month's dose was 55 mg. Today's dose was increased to 65 mg. Next month it will likely go up to 75 or 80 mg. It's slow going more at my insistence than what the doctor would like. Nick's body didn't handle the last huge dose very well a couple of months ago. I want the doctor to go slower. I don't like seeing Nick be sick from something that's supposed to help him. It's something that I can't deal with right now. So...we are taking it slow. We will as long as I can keep the doctor hearing my concerns.

As far as the chemo issue, that's all still on hold until some kind of symptoms present. The oncologist is keeping Nick's concerns about taking chemo in mind. He assured me of that today. During the physical exam, the doctor noted that Nick's spleen was back in it's normal place. Last month it was somewhat enlarged. If it were still that way today, it would be looked at to determine if a symptom were presenting. It wasn't enlarged at all today, so no problem. The doctor also has decided to do routine chest x-rays each month to look for any swollen lymph nodes that can't be seen any other way. Today's x-rays were clear.

Overall, today was a good day. It was very long. It started out with me needing to take my SUV to the tire place to have my tires looked at because my tire sensors were indicating a problem. This was before 7:00 this morning as we were trying to get on the road. Thankfully the problem was very minor and quickly taken care of. We were only 45 minutes late to clinic today.

We are scheduled to return to Birmingham on November 4 for a repeat of today's performance. My hope and prayer is that it will go at least as well as today did.

Thank you for continuing to pray for us. Overall, we are doing pretty well. Some days are still better than others, but I am told that is to be expected.

Pray as God leads you.

As always, we remain...

In His Grip,
Kristy Baxley

Wednesday, October 6, 2010

Pity Party

Ok...It's fair to say that my last post was a pity party. I don't have them often and almost never on here, but I needed the vent.

I'm better now. The kids and I went to the Smokies the first part of the week for a vacation with Keith's parents. It was a wonderful time away. We stayed at this indoor water park resort. It was a nice place. We didn't leave the resort until the third day we were there.

It was our first vacation since Keith's death with Nana and Pawpaw. Keith, the kids and I went on vacation with them every year for six or seven years. It was nice to go on a trip with them again. I know that we all missed Keith. His absence was definitely felt. I do think it was good for all of us to experience the moving forward of life.

I really appreciated the extra help with the kids. I was able to get caught up (a little ahead even) on my homework. I don't feel nearly as overwhelmed with that as I was.

Our "place" for vacation with Keith's parents has usually been the Alabama gulf coast. We were planning on going there this time, and I just couldn't go. I couldn't make the reservations. I couldn't do it. My heart was not in all. When I made the suggestion of this alternative, everyone, including the kids, was excited. It may be that our vacation place has to change for a while, at least until more healing has taken place.

Nick has a checkup in Birmingham in the morning. I'm not looking forward to going, but it's necessary. Hopefully it will be a run of the mill kind of day.

Thank you for praying us through the days since my last post. Life isn't nearly as nasty and yucky now. I'm praying that it stays that way for a while.

In His Grip,

Friday, October 1, 2010

There are some days

There are just some days that you don't want to live again, see again, or even think about anymore. These days do tend to stay with me though. It seems that since Keith died I have had more of those kind of days than the kind you want to relive, cherish, and hold near to your heart.

Those kind of bad, yucky, crappy, Alexander's No Good, Very Bad, Terrible Day kind of days just wear me out emotionally, mentally, and physically. The Alexander's reference is to a children's book about a kid that has had a really bad day. I can relate.

I wish I knew of some kind of cure for these bad days. I don't. I know that I pray A LOT during these days and after these days. I wish these nasty days would stop happening to my family. It seems like they just keep piling on. Kacie has asked me why God keeps allowing so much bad to happen to us. My only answer to her was that I didn't know. We just have to keep moving through the tough times and keep our eyes on God. She responded with, "Never lose faith, never lose hope, and never give up Mom." From her lips to God's ears and mine! What a perceptive child she is!

Please keep praying for us. There is a lot of yuck going on right now that I can't talk about. Just please cover us in prayer.

I want to end this with my "Remaining in His Grip", but I can't. I don't know where His Grip is right now. I don't feel it. I know it's there. I have faith that it's there. I just can't exactly find it.

So...I'm trusting that His Grip is there and the kids and I remain there, even though I can't exactly find it. After all, that is faith...believing in what you cannot see or in my case feel today.


Please, please pray for God's wisdom, protection, and mercy to intervene.