There has not been much improvement in Rex these past 3-4 weeks. He is certainly doing far better than he was 2 months ago, but he is still very weak overall. He probably has two good days a week, relative to his overall wellness. These are two days where he interacts with us, feels like talking, or even venturing out. What used to be relatively easy things to do around the house will totally wipe him out now.
His hemoglobin has been low the last several weeks, so he has been getting shots to try to build his blood; he has also received a blood transfusion to help with that. His hemoglobin has come up, but he still doesn't have the stamina that we were hoping that it would give him. We don't know for sure what triggers a good day for him versus a bad one. We have been looking at different things like supplements and food, but we don't see a real connection there. We have seen some improvement in how he feels when he has good bowel movements, but even that doesn't always help.
Today has been especially hard on him. He has had extreme nausea and pain throughout the entire day. He attempted to eat one bite of food this morning, but within minutes vomited. His vomit had what appeared to be old blood in it. He hasn't vomited anymore today, but he's had a tough day. He was finally able to keep a little something down this evening.
Rex has about 10 days left of his medical leave before he loses his full time job and his health insurance rolls over to COBRA. He hasn't had a paycheck in 8 weeks now; he does qualify for some disability with his employer; with that, he will receive 60% of his normal pay for a period of six months. His COBRA insurance will take about 40% of his disability pay leaving us with about 36% of his full time pay to live off of. I am concerned and a little fearful about this change. It's hard financially and emotionally. The financial part is obvious. The emotional speaks harder. It definitely shows Rex' illness and failure to improve or get stronger. It taunts death in front of our hearts and minds.
God has provided everything that we have needed throughout this past year and a half. I am very thankful for that. I will admit that we are in a financial crunch right now, any reserves we had are gone. We will have some relief once Rex' employer short term disability gets approved because they will back date his disability pay to the last day that he worked, and that will hopefully help us get caught up with bills that are due and/or past due. There is some hang up with his disability, so please pray for that to get processed and approved.
I haven't said much in a while about how the girls are handling Rex' illness. Last year, they had a really hard time while Rex was doing chemo and in and out of the hospital; once he resumed work you could definitely sense their relief as everything was going well again. Now, he has been out of work for a while, and they are very aware of his illness. They pray for him constantly and write notes to him expressing their love and desire to see him get better. They are cognizant of the seriousness of his illness, and they know that this disease claims so many lives. I have opportunities to share with them how good God is even when it seems that He allows things like this to happen. I stress that God always knows what is best even when it hurts us so much. I try to let them know that God can take tragedy and trauma in our lives to mold us into people that can impact the world and make a difference. Yet, I also allow them to feel the sadness and hurt associated with their dad's illness and want them to know that it is ok to not like his cancer. Overall, I think that they are coping extremely well. I am sure that the prayers that surround our family so consistently have protected the girls in and through this. Rex is a family man through and through. He has never expressed much interest in anything outside of family; his favorite activity is to be with his family, do with his family and go with his family. I sense that the girls are starting to forget this as he is not able to interact and play with them the way that he always has in the past. I want them to be able to retain the good memories of him and remember his devotion and dedication to them.
As always, we are constantly asking for God's wisdom and guidance each day for what to do. I don't really know what else to say; this is just so hard. I want Rex healed so very very much. It hurts so much it feels like my heart is actually breaking sometimes.
I don't really like ending on such a pitiful note; through the sadness, I am able to see good in each day and know that, "This is the day that the Lord has made; let us rejoice and be glad in it."
Donna Meadows
Wednesday, July 18, 2007
Monday, July 09, 2007
Friday, June 29, 2007
The past 8 weeks have been our darkest days yet through this illness. Rex had gotten so weak from mid-May to mid-June that I didn't know what to expect day to day. As I said in my previous email, he attempted to start a protocol with a cancer research institute. He was taking this particular amino acid formula that was supposed to deprive the cancer of certain amino acids and give him others that would help him. The week he started this protocol he either picked up some sort of stomach bug or this stuff really upset his body. At first, I believed that he had just gotten some sort of stomach bug, but as the weeks went by, it seems that it may have been the amino acid formula really messing with him because he just kept feeling worse and worse and was getting weaker and weaker. He had gotten to the point of staying in the bed all the time; he was semi-conscious most of the time; he was eating very very little; he was just not doing well, and he was getting worse as he continued to take this formula.
I finally got to the point that I realized he was very malnourished and he needed to eat -- something had to change. So, I encouraged him to concentrate on nourishing his body as a top priority; if that meant not doing the amino acids, then so be it. Since going off of the amino acid formula, he has greatly improved. He is still far from where he needs to be, but he is doing SO MUCH better. He is back to Rex - aware of his surroundings; he is still very weak, but he is not staying in the bed all of the time; he is able to interact with me and the kids; it is a slow process, but I see him gaining strength daily. His eating is still poor, but it is getting better.
I don't want to knock this research protocol because when I talked to them, they had not experienced this problem with other patients; I have wondered if maybe he had some sort of an allergic reaction to it. It seems kinda weird that he would have an allergic reaction to amino acids, but we don't know how else to attribute his reaction to it.
Rex has been out of work for 5 weeks straight now. We need direction in what to do next. I know that he does not have the stamina to work right now; he tires very easily. His body is in a fight for his life, and he just can't sustain working even part-time right now.
Rex is still in chronic pain, but I think that he has come to a point that it is part of his daily life and he deals with it. He doesn't talk about it unless I ask him. He doesn't complain at all. As anyone with chronic pain knows, it is always worse through the night and his particular pain hurts worse when he lies down, so he does not rest well at night and spends his nights alternating between trying to sleep in the bed or sleep sitting up leaned over pillows or sleep in a recliner chair. Restless nights make it harder for his body to recuperate or repair.
With Rex' cancer, there is really not a whole lot of promise that chemo can even offer him; we were told that it had a 10% chance that it might help shrink the cancer; not that it would shrink it 10%, just 10% that it might even help at all. It could, however, help alleviate the pain from the cancer. So, we had decided a few months ago that he would try some chemo to see if it would help his pain. At the same time, we were looking into this cancer protocol. We decided to give the research institute a try first. After attempting it for 5 weeks with no change in his pain and Rex just getting sicker, Rex started oral chemo 3 weeks ago.
Rex is dealing with nausea, sometimes severe, which also affects his eating, but it is much easier to control than it was while he was taking the other stuff. We can't see a real difference in his pain level, but I do think that the periods of rest that he does have are better. He seems to have a little deeper sleep pattern when he is resting, whereas before he was always half awake even when he was trying to sleep.
There are a couple of nutritional things that Rex did that seemed to work well when he felt well last year that he has re-focused his energy on doing.
Everyday that we have together is a precious gift that we don't take lightly. As we continue to seek God's wisdom and guidance for Rex' health, we are continually faced with our dependence on God for every breath that we are given. Whether Rex will be healed from this disease is an ever present question in our minds. At the same time, we don't want to spend our thoughts everyday obsessed with this question; instead, we would rather take one day at a time and live each day to the best that we can, doing what God wants us to do.
I love to find little statements or sayings that reveal truth yet seem profound in itself. I recently came across one that I don't recall having ever read before. "In order for God to use a man greatly, He must bruise him deeply." A lot of times I think that we go through bruising in our life, and we want to scream that God is not fair or does not love us; when really God just wants to make us great. God wants to mold us into great people that do great things. How do you respond to the bruises in your life? Do you dwell on it and think that it is an injustice or do you accept the bruising in your life to develop you and make you a greater person? Sometimes, it is hard to digest that circumstances beyond our control can have a positive impact in our lives, especially when it is painful and hurts; I think that is where faith and trust in an Almighty, Sovereign God have to rule over our human, limited minds and hearts. I can look back at various trials in my life and remember the pain; more than that, I can see the good that came from it even though at the time I couldn't fathom good from it all.
My bruising right now is nothing compared to the bruises that Rex has right now. And, I look at this and ask, "God are you just bruising Rex so that you can use him greatly?" Of course, I want the God's answer to be an emphatic YES! I have never begged for anything in my life more than for God to grant Rex healing and longer life with us. I want it so much that it hurts deep inside. Sometimes, I can't imagine God not granting health to Rex, but then I see others in similar situations with a more desperate set of circumstances that want healing just as much as we do and didn't get it. Why would we have more favor from God than another family? We are certainly no more deserving than they.
Trust in an Almighty God is imperative to get past the things we don't understand. God sees all and knows all past, present, and future; I have to trust that because of that, He absolutely knows what is best.
Have a great day!
Thank your for caring and praying for us,
Donna Meadows
I finally got to the point that I realized he was very malnourished and he needed to eat -- something had to change. So, I encouraged him to concentrate on nourishing his body as a top priority; if that meant not doing the amino acids, then so be it. Since going off of the amino acid formula, he has greatly improved. He is still far from where he needs to be, but he is doing SO MUCH better. He is back to Rex - aware of his surroundings; he is still very weak, but he is not staying in the bed all of the time; he is able to interact with me and the kids; it is a slow process, but I see him gaining strength daily. His eating is still poor, but it is getting better.
I don't want to knock this research protocol because when I talked to them, they had not experienced this problem with other patients; I have wondered if maybe he had some sort of an allergic reaction to it. It seems kinda weird that he would have an allergic reaction to amino acids, but we don't know how else to attribute his reaction to it.
Rex has been out of work for 5 weeks straight now. We need direction in what to do next. I know that he does not have the stamina to work right now; he tires very easily. His body is in a fight for his life, and he just can't sustain working even part-time right now.
Rex is still in chronic pain, but I think that he has come to a point that it is part of his daily life and he deals with it. He doesn't talk about it unless I ask him. He doesn't complain at all. As anyone with chronic pain knows, it is always worse through the night and his particular pain hurts worse when he lies down, so he does not rest well at night and spends his nights alternating between trying to sleep in the bed or sleep sitting up leaned over pillows or sleep in a recliner chair. Restless nights make it harder for his body to recuperate or repair.
With Rex' cancer, there is really not a whole lot of promise that chemo can even offer him; we were told that it had a 10% chance that it might help shrink the cancer; not that it would shrink it 10%, just 10% that it might even help at all. It could, however, help alleviate the pain from the cancer. So, we had decided a few months ago that he would try some chemo to see if it would help his pain. At the same time, we were looking into this cancer protocol. We decided to give the research institute a try first. After attempting it for 5 weeks with no change in his pain and Rex just getting sicker, Rex started oral chemo 3 weeks ago.
Rex is dealing with nausea, sometimes severe, which also affects his eating, but it is much easier to control than it was while he was taking the other stuff. We can't see a real difference in his pain level, but I do think that the periods of rest that he does have are better. He seems to have a little deeper sleep pattern when he is resting, whereas before he was always half awake even when he was trying to sleep.
There are a couple of nutritional things that Rex did that seemed to work well when he felt well last year that he has re-focused his energy on doing.
Everyday that we have together is a precious gift that we don't take lightly. As we continue to seek God's wisdom and guidance for Rex' health, we are continually faced with our dependence on God for every breath that we are given. Whether Rex will be healed from this disease is an ever present question in our minds. At the same time, we don't want to spend our thoughts everyday obsessed with this question; instead, we would rather take one day at a time and live each day to the best that we can, doing what God wants us to do.
I love to find little statements or sayings that reveal truth yet seem profound in itself. I recently came across one that I don't recall having ever read before. "In order for God to use a man greatly, He must bruise him deeply." A lot of times I think that we go through bruising in our life, and we want to scream that God is not fair or does not love us; when really God just wants to make us great. God wants to mold us into great people that do great things. How do you respond to the bruises in your life? Do you dwell on it and think that it is an injustice or do you accept the bruising in your life to develop you and make you a greater person? Sometimes, it is hard to digest that circumstances beyond our control can have a positive impact in our lives, especially when it is painful and hurts; I think that is where faith and trust in an Almighty, Sovereign God have to rule over our human, limited minds and hearts. I can look back at various trials in my life and remember the pain; more than that, I can see the good that came from it even though at the time I couldn't fathom good from it all.
My bruising right now is nothing compared to the bruises that Rex has right now. And, I look at this and ask, "God are you just bruising Rex so that you can use him greatly?" Of course, I want the God's answer to be an emphatic YES! I have never begged for anything in my life more than for God to grant Rex healing and longer life with us. I want it so much that it hurts deep inside. Sometimes, I can't imagine God not granting health to Rex, but then I see others in similar situations with a more desperate set of circumstances that want healing just as much as we do and didn't get it. Why would we have more favor from God than another family? We are certainly no more deserving than they.
Trust in an Almighty God is imperative to get past the things we don't understand. God sees all and knows all past, present, and future; I have to trust that because of that, He absolutely knows what is best.
Have a great day!
Thank your for caring and praying for us,
Donna Meadows
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