109 Days and Phase 2 of Treatment

I know that it has been over a week since I posted an update. Not for lack of anything happening, just lack of time and emotional fortitude to post an update.

We had one more exciting night with ambulances and ERs last week. Travis was having what is termed as partial seizures. We spent a few hours in the ER, they increased his anti-seizure medication and sent us home. So far, that dosage seems to be effective.

The hardest part is that over the last few weeks, there has been a decline in many areas for Travis. This is so hard for me to watch on many levels. His balance has declined to the point that we use the manual wheelchair when we go out. He is still able to use the 4-wheeled walker at home but someone has to always be with him. He is very unstable, often leaning to the right. What makes is more difficult, is that he does not realize he is leaning to the right. By the time he does realize it, he cannot compensate and begins to fall. His overall strength has diminished and his right side is now weaker than the left. The tremors that he used to have only in his hands on exertion are now showing up in his lower extremities as well. After meeting with the physical therapist on Monday, she pretty much confirmed for me what I had expected. What we are seeing is not so much a strength and endurance issue but just that the messages are not getting to the body parts in the way that they should. Their goal right now is to help keep his strength as high as we can and give me ways to navigate and be able to manage Travis’ weakness in this area.

His memory has gotten progressively worse, which we knew would happen. Last week, he forgot that he can not get out of bed by himself. By the time I was fully awake to realize what what happening and made it to the other side of the bed, he had fallen out of bed onto his knees. On some level, he is emotional about not remembering some things. Last week as I was packing up Christmas, he wanted to know why I was putting things away when we had not had Christmas yet. I told him that we did have Christmas. He became very emotional that he could not remember it, not so much for Christmas itself because he could not remember this holiday with our children. This is where pictures help but it does not seem to jar his memory as he looks at them. There has also been some long term things that he is having trouble remembering on occasion. Like where our bedroom is and things like that.

His cognitive ability has decreased as well. He sometimes cannot understand what I am asking him to do. On more than one occasion he has said to me that he does not understand what he should do or what to do next.

He seems to have a hard time regulating his body temperature. He will cold and just begin to shiver and it sometimes takes a while for that to resolve no matter how many blankets I pile on top of him.

Overall though, if you ask him if he is sad or depressed, he will tell that he is upbeat and happy. It just does not translate to any outward appearance that we can see. But on some level mentally and emotionally, he seems okay. Again, I think part of God’s grace and mercy to Travis during this time.

When we met with Dr. Pan today, we discussed the MRI. While there seems to be some changes that could point to progression of tumor, it could also be radiation effect. After discussing all the symptoms and decline that we have seen, Dr. Pan stated that those could be attributed to either tumor progression or the fact that he received whole brain radiation. He is not comfortable at this point making a determination as to what is transpiring.

So the plan remains the same, Travis begins the intensive chemo regiment on Monday. He will take this regiment all next week. Most likely the effects from the chemo will begin to show up around day 2 or 3 and then probably continue for up to a week after finishing. Twenty-four days after the 5th pill, we will do the same thing again. He will get blood work the week before every round to make sure that his counts are adequate. We will see Dr. Pan again towards the end of March for another MRI. Travis will have had 2 rounds of the increased chemo at this point.

Over the next 2 to 4 months, Dr. Pan feels that he can give us a much better picture of what the road may look like ahead and what we can expect. If the tumor does stop growing, he thinks that Travis will get better but to what extent he cannot tell us. So for now, we still wait. That seems to be so much harder for me and all of us, as Travis seems to be less and less of who he used to be. It hurts on a level that I cannot even begin to explain in words.

I have sat and talked to the children about all of this. I even discussed with them Travis’ living will and what his wishes were should we get to that point. I thought it was important for them to know before we encountered any situations.

SInce my last post, I have asked God to lead me through these decisions. Whether that is a gut feeling, a closing of doors or whatever. I can not hear Him right now but I know that He can still lead me. I have also asked Him to hold the enemy’s voice at bay. It is too hard for me to distinguish right now in the midst of all the voices, who is who. I know God knows my heart. Knows that I do not want to ever look back on this time and question the decisions I had to make for Travis and our family. He also knows that I want our children to have peace about that as well.

I have also had to realistically look at my life over the next few months and make decisions about what I can really do and what I cannot. It is enough for me to take care of Travis, try and get some sort of homeschooling done, emotionally connect with our children and be mom and dad. Chuck and Helen have been wonderful but they are trying to navigate this as much as I am. Most days emotionally and mentally, sometimes physically, can be exhausting. I now have someone coming in once a week to clean and this is a huge load off. I have also decided to keep meals coming 3 nights a week. It is just too hard sometimes to think about dinner and it is usually 5:00 p.m. when I realize that I have to feed people in an hour. We have updated all our needs so far (there may be more) through the end of March on our Care Calendar (www.carecalendar.org). The Calendar ID and Security Code is at the top of our home page here.

Thank you again for all your love, care and support of us.

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99 Days and Another Hospital Stay

Today marks 99 days since Travis first went to TGH. Somehow we ended up back there on Thursday evening.

Throughout this journey, I have maintained a pretty fierce anger towards God, especially regarding the complications that we seem to experience. I can not for the life of me understand why we have to endure those as well in the midst of everything else. Even though it was evident that God was there in the middle of the complications, my anger kept me from fully acknowledging that in any form, expect begrudgingly. After the past few days, I can no longer deny God’s presence. I still do not understand His choices but I can not ignore His presence, no matter how angry I am.

Travis had his first grand mal seizure on Thursday evening. Seizures are a definite possibility when you have a brain tumor. We were aware of that but I kept hoping it would not happen. I had already had a discussion with the children explaining what it would look like and what to expect as well as what we would need to do if Travis did have a seizure.

When you walk through something that you have never experienced before. You have a tendency to proceed with certain vague picture or expectation of what might happen. At least I did, regarding this situation that we are living in. I continually would come face-to-face with the fact that my picture was not matching reality. Every time that happened, not only did my anger increase but the so did the fear and the hurt. My picture was that I knew about the seizures but my picture had the seizures lasting a few minutes, we would spend a few hours in an ER, he would placed on medication and that would be the end of it. No more seizures. Last Saturday, Travis and I attended a support group for brain tumor patients and their caretakers (this was our 3rd one since Travis was diagnosed). At this meeting, one of the caretakers was talking about the seizures that her patient was undergoing. It became painfully clear to me during her telling of her experience that my picture was wrong. She brought to light several key facts, i.e. duration of seizures, reoccurrence of seizures and after effects of seizures, that I was completely unaware of. Yet, I have to say that this information fully prepared me, whether I liked it or not, for Travis’ seizure the other evening. God knew that and He arranged for my picture to be altered before I experienced it.

Even though you know that something might happen, it does not make it any easier. There was a sense of dread for me that I tried to ignore. It was probably one of my biggest fears about going-out-of-town. Even though Travis had not had a seizure, I was afraid of the possibility of that happening. Although I had been apprehensive about our trip, I was fully prepared to go and have fun. Tuesday morning when Travis started with a congested cough, something shifted for me. There was now this feeling in my gut that seemed to say we should not go. It would be an understatement to say that I am clear on all that I feel and think these days. There is just to much on my radar and I am overwhelmed by most of it and can not seem to distinguish anything. So even though I had this gut feeling, I thought it was fear and I was still going to go. Once the cabin got snowed in, that decision was removed from me. Our original plan was to pack on Wednesday and leave on Thursday. We were planning to stop somewhere in Atlanta or Macon to spend the night and then continue to the cabin on Friday. If we had followed our plan, we would have either be on the road or in a hotel somewhere in Georgia. God knew that and He arranged for us to be right where we were supposed to be.

Chuck and Helen (with Lauren) had to go to Savannah to help Travis’ sister and brother-in-law get moved to a different military base. They had left Wednesday. Most of you saw my FB post about the brush fire in the lot across the road from us. That happened on Wednesday afternoon. It was a little nerve wracking for a while because I was not sure if they were going to have us evacuate of not. They managed to keep it under control and it was all over by that evening.

Travis’ seizure started at about 6:30 p.m. on Thursday evening with no warning signs at all. We had just finished up dinner and I noticed that Travis had not eaten very much. He said that he was not hungry. I cleared his plate and turned back around and noticed that he was shaking. At first it looked like he had chills, like you would get with a fever. He was sitting on a chair at the kitchen bar (a very unsafe place to have a seizure). I did not realize it was a seizure at this point, I thought because of the cough that he might have a fever. I helped him off the stool and to the recliner to lay down (I did notice that I was supporting a lot of his weight at that point). Unknown to me, Travis was now in the safest place possible for the duration of the seizure. God knew. The doctors would also remark to me later that it was unheard of that Travis walked while in the beginning of a seizure. I took his temperature and he had no fever. Now I was baffled. He was still shaking and I was very unclear as to what was happening. I called the on call doctor at Moffitt but I was relating the symptoms to her like it was chills. She told me if it continued or he developed a fever to take him to Moffitt but she did not seem concerned. As the seizure continued, I am now beginning to think that it might be a seizure but having never seen one before, I am still not sure. The seizure lasted about 20 minutes. At the end of the seizure, Travis could not respond to me for 90 seconds (the longest 90 seconds of my life). He was looking right at me but was unresponsive. It was then that I knew that he had just had a seizure. I immediately called the on call doctor back and she confirmed the seizure and told me to get him to TGH. She would call ahead and tell them that we were on our way. (Interestingly enough, the on call doctor was on ER neurologist that saw Travis when he first went to TGH in October. She remembered him and his case and was able to give a lot of background information to the ER.) God knew what the circumstances needed to be for me to realize that Travis had a seizure and what doctor needed to be on call that evening.

I wish I could explain in better words what God did for me during the seizure. It was like He was filtering it to me somehow, so that I was receiving it in a very gentle and not traumatic way. Even when I first began to have doubts and start to think about it being a seizure, the only thing that I can remember feeling was peace. There was no panic or fear, just a need to understand what might be happening and how to help Travis. This peace and filtering was so evident that Brooke actually experienced it as well. She was in the room when the seizure began (she left at some point and went to her room). After the seizure was over (Travis was now sleeping and I was quickly getting things together to leave), I went to tell the boys and Brooke what had happened and that I was headed to the ER with their dad. Brooke remarked to me that she had thought in the beginning that Travis was having a seizure but that I seemed to so calm that she just assumed it was not a seizure.

God was again in the details as I placed phone calls to friends who could come stay with the children that night and the next day. He was in the details making sure that I did not ride to the hospital alone with Travis or be alone at the hospital. All of these things are huge to me right now. God was all over this. I do not why it had to happen but He was there and it was unmistakeable.

When seizures occur, it does affect the brain in regards to trauma. If seizures are not brought under control, damage can occur. Because Travis’ seizure was so long, it took him about 24 hours before he was mentally and cognitively back to his baseline before the seizure. This was partly why we stayed in the hospital as long as we did.

Travis came home this evening. He is now on anti-seizure medication. They have told me that this is not a guarantee that he will not have another seizure, it is just a starting dose that might have to be adjusted. If he does have another seizure and it lasts less then 3 minutes, we are to call Dr. Pan’s office to see about increasing Travis’ dose. If the seizure lasts for more than 3 minutes, then we are to call 911 as they have injectable medications that help get the seizure under control. At that point, we will probably be staying at least overnight in the hospital again until everything is stable. Since he is just starting this medication and we have no idea whether this dose is adequate or not, we are putting off heading to Orlando. I know that God again is in this somehow and He will work out whatever break needs to happen for our family in the right timing.

Last Wednesday before these events, a word picture had begun to develop for me. I relate best with word pictures and visuals. I know that God knows that. Whether it was from Him or from me, I am not quite sure. I am not even really sure that it matters.

That picture was me pounding on God’s chest while He is holding me. While I am pounding on His chest, I am crying, sobbing and screaming everything at Him that I can think of, stopping just short of telling Him that I hate Him right now (even though I thought it). God is holding me loose enough so that I can pound His chest but tight enough to not let me go. In the picture, I see myself coming to a place of exhaustion with the anger and the pounding. Then there is this overwhelming urge to bury my face in His chest while I am sobbing and crying and just tell Him how bad this hurts.

During these events over the last few days, that picture has stayed embedded in my mind. The anger was not there as much during the last few days. I keep thinking that maybe it’s time to give into the urge.

95 Days and the End of Radiation

Last Wednesday, Travis had his last radiation treatment. At the last treatment, you get to take home your radiation mask and a certificate. (Pictures to follow, I just can not seem to find my camera right now! 😦 ) When I first realized weeks ago that Travis would take his mask home (we had seen another patient walk out with theirs), I was not real excited about it. I just did not want this reminder in our house of everything that we had been through in the past 6 weeks. But I have to tell you, as has happened very often for me on this journey, what I experienced on that day was totally different. There was this sense of victory, of having survived something. I am now trying to figure out how I put this mask in a shadow box and hang it on our wall! 🙂

In that moment, I also decided we needed to celebrate. So that evening, we all headed out for a celebration dinner to Longhorn Steakhouse. (Again, picture to follow.) It was a great evening and I am so glad that we did celebrate the end of this phase.

On the last day of radiation, Travis took his last chemo pill as well, at least for now. The new phase will begin sometime in the beginning of February but I will have more details after our appointment on the 25th.

We were finally able to see Internal Medicine last week at Moffitt and they will begin overseeing the blood thinners and the medication induced hypoglycemia. This week, the tapering of the steroid has seemed to help the blood sugar levels. The numbers have not been quite as high and today Travis received no insulin at all. But the headaches have increased. Travis was having about 1 headache a week and now in the past 6 days, he has had 4 headaches. These are related to inflammation and swelling in the brain and resolve with Percocet. The doctors are not ready to increase the steroid yet but we are monitoring it.

Sometimes it is hard for me to convey in words where Travis is and where we are in this whole process. There is so much more than just the facts and figures. In some ways, there has been a decline in Travis’ mental and cognitive ability over the last few weeks. It almost seems on most days that he is back where he was when he came home from TGH in October. His memories are mixed up and he thinks things have happened that have not happened. He told me about a week ago that he had been working and driving every day during his treatment. It is really pointless to argue because to him, the memory is accurate. He does still realize that he has a brain tumor and he knows that he is receiving treatment. But cognitively, he does not comprehend the scope or the extent of the circumstances. He just thinks that he is sick and once he is done with the medicine, he will be better. He is not able to really have a conversation right now. He will answer questions but the answers are limited.

Originally our plan over the 3 week break was to head to a cabin in NC. Now, apparently, we have Plan B. Travis has developed a congested cough over the last few days and we are medicating that. The area where the cabin is has been affected by all of the recent snow and ice storms heading through the southeast. So, officially right now, we can not even get to the cabin that we were going to be staying at for at least another couple of days. According to the weather channel forecast for the next 10 days, another storm is due to come through next week. I spoke with the owners about their experiences of being snowed in and in this case it is likely. That presents a whole new dilemma for us. Under any other circumstances, being snowed in would be great, but not when you might need access to medical care. Wisdom at this point says, maybe this is not a good time. So for now we are going to stay home, relax (I actually might even get Christmas packed away) and are planning on heading to Disney for a few days next week. All in all, everyone seems to be happy with that plan and I have peace, which on some level means a lot to me.

A New Year

Last week, 2010 was history and 2011 was born. To be honest, I did not like that. I am more aware of the passage of time now in this season then I ever have been in my life. I know that time has always been passing but I seem to be aware of every minute now instead of just days, weeks, months or years.

On some level, there has been an awareness of time. I struggle understanding how I could have a child who will legally be an adult in less than 3 years. When did that happen? I struggle knowing that his brother will follow him in a mere 16 months and then one of his sisters 14 months after that. I know that translates into years but how in the world could it be possible that in a little more than 5 years, we will have 3 adult children and only one left in the “nest”? It seems like yesterday that I had 3 in diapers and was wondering how I was going to survive.

I guess everyone considers time differently. It probably depends a lot on what circumstances you find yourself in and how you view it. Some days, time seems like an enemy to me and I struggle to hang on to every minute only to find them slipping through my hands. Other days, time is a friend as we make memories and chose to take moments to say the things that have always been in our hearts but we just never took time to say. Then again, some days, time is casual acquaintance. One that I do not pay to much attention to because on that day, I can not handle the depth of emotion that is connected with the time. And on some level, I wonder, if on the other side of this, I will ever view time the same way again. I have feeling that the answer is “no”.

I usually love the birth of new year. In the past it has represented promise, hope and something different than what has been. I am sure it still represents that on some level but I can not see that this year. In the past, I have always been able to let the book close on an old year and opening the cover of a new year…even when we were in the midst of of some difficulty. It was easy to believe that the new year held something different, something more, something better than where we had been. This year it seems that I was trying to hold the cover shut on 2011 but yet despite my efforts, the book opened just the same.

I will be honest and say that I struggle to find “hope” anywhere right now, much less in a new year. I always thought hope was something that you just had or you made yourself get somehow. Now, I am not so sure. I do not have it and I have not been able to get it. Maybe, hope is something that only God gives. I know that there is the ultimate hope that life does not end here on this earth but that this is only the start. But the hope that I am striving for is for here and now.

I remarked yesterday to someone that it would be so much easier for me to walk this road right now if this situation was a result of something I had done wrong. Consequences, so to speak. I know that it is not true but I have tried to find something. Just like Job’s friends encouraged him to do. I come up empty. Not that I am perfect but just the sense that this is not about some consequence. It would make it easier on some level to understand though.

Right now, I understand nothing. I struggle to make sense of the pain and the suffering of what we are walking through. On some level, I sense that I will probably never understand. This is part of the “mystery” of God. I’ll be honest…I do not like that. There is a line in the Narnia series that is repeated several times that has always stuck with me. The line where they state that Aslan is not a tame lion but “He is good”. I struggle with that goodness right now. God seems, in my opinion, to be acting very cavalier with our lives and so I struggle to see His goodness. Maybe that is faith, believing that God is good even when everything else is telling you different. And yet, I cannot seem to conjure up that faith. On some level, I think a “shift” it going to have to take place inside of me before that depth of faith appears. Another part of the “mystery”, I guess.

My problem lies in my definition of goodness. “If You act a certain way, the way I deem good, then You are good.” God is saying, “I am good regardless of how I act. I can be nothing less.” When our definition does not match His, something gets lost. The same thing happened years ago when Jesus arrived. The Jews were expecting a King to arrive on the scene and conquer the Romans. Thereby establishing God’s Kingdom on the earth forever. That was the Jews’ definition of how God could be “good”. Yet, Jesus arrived as a baby. He spent 30 years walking the earth doing seemingly nothing until the last moments. Compared to the amount of years He lived and the amount of years He spent ministering and proclaiming who He was. That seems very odd. He was crucified and if there had been any hope, It seemed lost. Then He was resurrected. We know that looking back this was God ‘s definition of “good”. He knew that His plan was good when no one else could seem to grasp it. What if we had been living then? The Jews missed it because of their definition of “good”. Some are still waiting for the King, the hope to arrive.

I do not want to miss it because the “good” did not arrive in the package that I wanted. It did not have the right kind of paper or the right kind of bow or arrive when I thought it should and in the way that I deemed good.

Maybe the goal of 2011 will be making every moment count and being willing to accept the “good” no matter what the package or my definition.

84 Days and 3 Treatments Left

It has been crazy Christmas and New Years. Last Thursday, when Travis got out of the shower, he had bruising on his left arm from his elbow to his wrist. Since we were already headed into Moffitt for a a radiation treatment, they decided to check it out while he was here.

They did an ultrasound of his arm but did not find any blood clots. They determined that it was a hematoma (bruise, where blood pools under the skin). This seemed odd to them because he had not fallen or hit his arm in anyway that would have produced such a large area of bruising. Initial lab results showed that the clotting factors to be within normal limits. They did some additional blood work related to the levels of blood thinner in his system but those results will not be in until today or tomorrow. They sent him home and told me to watch the bruising, if it got any worse or if he developed anymore on his body elsewhere then I was to call and they would make a decision. He has been fine all weekend. The bruising is still there but not any worse.

During his last hospital stay at TGH, they discovered that Travis has medication induced hypoglycemia (from the steroid). The steroid has caused his blood sugar levels to fluctuate and stay high at times. We are now on a regiment where I check his blood sugar 4 times a day and administer insulin as needed depending on the blood sugar numbers. Travis is thrilled that this is just one more time that I get to “stick” him.

We originally were to finish radiation on the 3rd but since he missed a treatment while in TGH and last week the radiation machine was down one day and he could not receive treatment, we will now finish on the 5th. It is hard to believe that we have been doing this for 6 weeks. On some levels it feels like 6 months! 🙂

I have further clarification about MRIs and effectiveness of the treatment so far. Travis will receive his first MRI and see Dr. Pan at the end of the 3 week break (end of January). This is the MRI that will be a baseline and will actually look worse because of the radiation effect. He will start phase 2 of the chemo treatment (where the dosage triples) at the beginning of February. He will have his next MRI at the end of March. This MRI will show us where we stand as far as the tumor goes. It seems like a long time to continue to wait when we have waited so long already.

We are planning to go away together as a family for a mini-vacation during Travis’ three week break. Still working out the specifics on that. While we definitely need some time away to recuperate and be together as a family, there is quite a bit of apprehension on my part about leaving town. It seems that every time we have turned around, Travis has developed some sort of complication with seemingly no symptoms prior to discovery. It unnerves me a little to head of out-of-town with all that has taken place recently. So prayers for peace and for protection for Travis would be appreciated.

Thank you again for your continued prayers and support for Travis and our faimly.