New Medicine

Well we went to Tennessee for our second last Tuesday. It was a fast and exhausting trip. We left on Tuesday morning and made it home on Wednesday night at 12:30. The reason it was such a quick trip was Rebecca and I then left on Thursday to go camping for the weekend. It was a great time to get away and forget about things for a while. As good as it is to get away, it's always good to be home.

The visit consisted of a CT Scan, MRI, Dermatologist visit, and Oncologist visit. Along with meeting with the research nurse to pick up the new chemo. (The MRI was much better on me this time!) The scans didn't tell us much. Being at a new place they didn't have the results of the last scan and weren't able to compare size difference. The good news is the cancer still hasn't spread to any other vital area's besides my lungs. They did say the tumor under my arm had changed shape but didn't know about size with it either. I think it has gotten bigger. I will have to start having my full body scans again because the new chemo can actually cause a very treatable form of skin cancer. The chemo will consist of my taking 4 pills 2 times a day for a total of 8 pills a day, everyday. Then going back to Nashville once a month to pick up more pills. I will have scans done every two months. The research nurse did tell us that the drug company that makes the pill is "setting up" or training a doctor in Oklahoma City to dispense and monitor the drug. So there is a chance that in a few months they will be able to transfer me to the new doctor in OKC. I have mixed feelings. It would be great to only have to drive to OKC and not Nashville. On the other hand, I am tired of switching doctors. It seems as soon as we get to know a new one, and they get familiar with me and my case, we switch. But I guess it is still better than driving 9 hours. As I said before they advised us the side effects should be minimal. The biggest being a flu like feeling that will last a few days. Hopefully I will know soon what I will have to deal with.

Again we don't really have much news. It seems my cancer is just stubborn. Not growing too much, but not going away. It's kind of like a toddler who sits and pouts in the corner and just won't do anything. You can't even bribe it with toys! We seem to go through times where we are in limbo, which gets old itself. We are there again. It will be two months before we have scans and know anything again. The waiting is there worst part. I am still hurting most days and just don't have the energy I used to. My sleep is still out of whack which makes things even more fun. Other than that we are gearing up for a busy summer. The kids have basketball camps, VBS, and church camps back to back, almost until school starts again.

Well that is all for now. Don't have much to say, but wanted to give an update.

Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breath..............

My Prayer

Dear Heavenly Father,

Thank you for all you have done for my family and I. The way you continually provide for our needs during this time. Thank you that we never go without. Thank you for your love, support and guidance whenever I seek it. Thank you for your promises of peace and joy no matter the circumstances. Thank you for the people you have placed in my life who give me all I need.

Thank you for my wife and the way she loves me unconditionally, stands beside me, takes care of me, supports me, listens to me, holds me and the way she continues to teach me about true love.

Thank you for our children, for their laughter, their smiles, their voices, their love, their energy, their friendship, and the way they teach me to continue to love life the way a child does.

Thank you for my family and they way they help take care of us, support us and stand beside us. Thank you that they listen to me when I need to talk, hear me when I need to cry and set me straight when I am off course.

Thank you for my friends who also stand beside me, love me, support me, listen to me, spend time with me. Thank you they help me take my mind off of things when I need it, share their hopes and struggles, and remind me that we are not alone in this journey.

Thank you for our home. That we have a nice place to live, to be warm in the winter, cool in the summer and a safe place to sleep at night. Thank you that it is a place that we as a family have made life long memories. A place where we share tears, laughter, love, joy, fears, hopes and dreams.

Thank you that I can still function most days, even if not at the level I would like. Thank you, in spite of all, I am still as healthy as I am. Thank you that I can see, hear, touch, taste, smell, laugh, smile, walk, hug my kids and wife, and enjoy a good nights sleep.

Father, as I think about all of this, and look at the world around me, I know that things could be much worse.

We could be broke, but we're not. We could be homeless, but we're not. We could be hungry, but we're not. We could be alone, but we're not. I could be in a hospital, but I am not. I could be in a wheelchair, but I am not. I could be throwing up again, but I am not. I could be bed ridden, but I am not. I could be unable to communicate, but I am not.

God, there are many things that could be worse, but their not.

Thank you father for sustaining us each and every day. Thank you for all of your blessings and love as we continue to travel this journey.

Thank you God for all that we have. And just as much, thank you for what we have not.

Amen

Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breath.............................

Bored

I am sitting here this morning listening to and watching the rain. It is so quiet and peaceful. I am used to this being my time of day to sit and be quiet and reflect, pray, and gain my strength for the day. All of the sudden, out of no where the silence is broken. Catching me completely off guard and totally throwing me out of my groove, a small individual with long curly blonde hair appears and shattering the wonderful silence asks, "what are we gonna do today?". First day of summer. Forgot all about it. What's for breakfast? Is it still raining? Where's Tyler? Where's Mom? What are you doing? Aw summer.

I do have some bad news this morning. This will be the last blog I will write. I know, some of you are probably happy. Some of you are probably sad. I myself am a little sad as well. The doctors said 9 months, they didn't say anything about the world ending on Saturday. I just read about it on the internet. I am always the last to know about things like that. Now I am going to have to change my plans for the weekend! I get a huge kick out of people like that! It has been an interesting week in the world between the world ending and Obama's statements on the Middle East. What an enchanting time to be alive. And those of you who know me really well know that I stay out of conversations about politics and religion. And I am not going to start right now. So I will leave both of those alone! It has been a good week in the Wileman house. Several good things have happened, finally. I won't go into all of it but it has definitely been a nice change of pace for us. And yes school is out and we are gearing up for a busy summer. Basketball camp, football camp, vacation bible school, two different church camps, trips to Nashville and possibly moving somewhere in the midst of all of that. In an attempt to try and keep the kids busy this summer I think we have gone overboard!

I have received a lot of responses from my last two blogs. Thank you to all of you for your input. I speak openly and from the heart and hope it helps give you a glimpse of what is going on. It seems like I go through times when I just don't blog and then I will go through times when I do it almost every day. But the main thing I want everyone to know is that we are doing well and enjoying life and whatever it brings. We have learned so much through all of this, it would take volumes to say it all. And no, this isn't my last blog, sorry. You have to keep putting up with me.

Hope everyone has a great weekend. We love you guys.

Remember every day to put one foot in front of the other, dink a lot of water and don't forget to breath...............

Questions To Ponder........

I know this is going to sound like a country and western song but, what would you do if your doctor told you that you had 6-9 months to live and they are going to try a medicine that may or may not work? And if it does work it will only work for a little while, maybe a few months, maybe a few years, or not at all? I know I tried to address these questions in a blog not long ago, but I don't really think I did it justice, so I am going to try again.

Let me first say, in our commitment to be ever honest, I think some misinterpret the honesty for negativity. Please don't misunderstand, we are not negative. We have never, nor are we now giving up. We will fight no matter what. But I still hold firm to the belief that we must be honest about where we are. And I share our lives, like I did in the previous blog, so that others can see life doesn't stop no matter what. Not only do we deal with the cancer, we still have to deal with life, and sometimes it can be overwhelming. Not only do we deal with life, but everyday those words, you have 6-9 months left if not treated, echo in my mind. I will be 4o in August. I used to joke and say I will never make it to 40. Had I known then what I know now, I would have never joked. But as I approach my birthday, I daily examine my life and the possibility I may not be around much longer. Not something I was planning on at this point in my life. But it does cause my to examine where I am at and the kind of person I am.

Let me first say, I do not spend time looking back. I don't do the if only, or I wish I would have. I believe the past is where it belongs. I cannot go back and change anything, and any time I would spend dwelling on it, or worrying about it, is time wasted. And I also don't live today in fear or in shutdown because my day's may be numbered. I try my best, and I don't always do it well, to enjoy each day that I have and be happy. But being in the position I am now, I do think about the end. One of the things I think about quite a bit, and just shared with Rebecca not long ago is, when we discuss things in the future my first thought is always, will I be here? For example, we were discussing the kids school year next year and all I could think was will I be here. When we talk about Tyler going into high school I think, will I be a part? It makes it difficult to plan for the future. Obviously we plan like I will be here, but to say it's not in both of our minds would be a lie.

Also, being a husband, father, man and provider, I worry about what would happen to my family after I am gone. I worry about their financial situation, worry about the yard getting mowed, worry about the oil getting changed, and worry about the little things on a daily basis that I take care of. Mostly I worry about their emotional, spiritual, and physical well being. I worry about Rebecca and her sense of loss and loneliness, and pray for her strength and healing. And yes, she and I have discussed how I feel about her moving on someday, and how I feel about her getting remarried. (Which for the time being is just between us.) I think about how grateful I am that I met and married her, and thank God she is part of my life everyday no matter how long or short that time may be. What I will say is all I care about is she and the kids being happy with or without me. We have also discussed with the kids the possibility that there may come a day I won't be here anymore, and that while okay to be sad, it's also okay to move on someday and enjoy and make the most of life. (Not fun by the way.) All the while living right now like things are as normal as possible, and enjoying my time with them, imparting as much of me in them as possible. (Whether they like it or not!) We have talked about my funeral, though not in final detail. But Rebecca know they gist of what I want.

I think about my parents and the fact that your not supposed to outlive you children. As a parent now, I cannot imagine what that would be like. I am more thankful each day for them and how they raised me. I try to call them more, almost everyday, and spend as much time with them as possible. Some of the things that go through my mind are, I am glad I am not their only child, and I am grateful they have grandchildren. I think a lot about how much I love them and how much they mean to me. I think about my brother and sister and their families, and am grateful if this had to happen to one of us, it was me. I am very grateful neither of them or their families have to deal with this. I think everyday how grateful I am for my family and their love, strength, and support. And for making sure my family has what it needs everyday.

I think about all of the friends I have made through the years. I am especially grateful for the ones who continue to stick by me everyday, who stay in touch, hang out with us and are there unconditionally. It is from you and my family that we gain much of the strength we need each and everyday.

What I don't think about. And it will be random. I don't think about the end itself. It will come whether in months or years. When eating that doughnut or steak I don't think to myself I shouldn't be doing this. Now, I just do it. I don't think to myself, I need to get off the couch and go run or walk. I just don't! Actually I can't it hurts too much right now. I don't think, I really need to do a will. I just did it. And there ain't much to leave anyway! I don't think, some day I want to drive to Houston or Nashville. Well you know. I am not sad that Oprah is going off the air, I don't care. I don't think, you know I will be 40 in August, I really need to get to the doctor and have an annual check up!

This is but a part, an honest part, of what goes on in my head on a daily basis. I bring it up again because I was asked again the other day about what I think about possibly nearing the end. I think about everything you can imagine and then some. I think about how many people would come to my funeral. I think about how long it will be before people don't think about me so much after I am gone. I do think about Rebecca getting remarried. I picture being at each of the kids high school graduations. I think about the IPad 4 or 5, which ever one it would be. Right now, because life hasn't stopped and there is so much going on in our lives, I am overwhelmed and can't seem to think about a whole lot. But if you noticed, like I did, there was one theme that seemed to keep coming back while I wrote this and it's gratitude. And it's true. I am continually grateful. Grateful that if this had to happen to me, this was this best point in my life for it to happen. Words will never do justice to how much I love my wife and how grateful I am for her and the kids. I am grateful for my parents and the way they stand by us, and love me unconditionally. I am grateful this happened to me and not someone else, especially not one of the kids, or my niece's or nephew. I am grateful for my friends and their love and support.

I know this was a little long and a lot of this I have written about not too long ago, but God put it on my heart and I felt led. I really don't want anyone to think the honesty is us giving up. WE ARE NOT! I just felt led to let you in a little on what goes through my head each day. We love each of you and cannot thank you enough for your support. We did get a call from Nashville yesterday and we will be going back next Tuesday for appointments on Wednesday. Hopefully after the appointment we will be starting the new medicine. Oh and do me a favor. We absolutely love it when people leave comments on our blog. Do us a favor and if you do leave a comment, and don't mind, please sign your name to it so we will know who you are. If you really just don't want to we understand, but we like seeing them and knowing who it is.

Remember everyday to put one foot in front of the other, drink a lot of water, and don't forget to breath...............

Quick Update

It is a chilly Saturday morning. I don't like saying that. It was 90 degrees here on Monday and today the high is only going to be 62 degrees. Gotta love Oklahoma weather. I am not a big fan of heat, but after the winter we had was really enjoying the warmer weather. The cool is hard on the garden and my body!

The saying if it can go wrong it will has truly applied to us as of late. Both cars in the shop, the garbage disposal quit, Rebecca's computer crashed and it's permanent, and our horse and colt died during birth. Last Sunday Rebecca went into to work to take care of a few things and while getting out of the car fell and landed on her elbow. The x-ray's were negative, but it is very swollen and she is in a lot of pain. She is off work until the doctor's release her. She has an appointment with an Orthopedic specialist this coming Monday to try and determine if there is any major nerve or ligament damage. I am not feeling well most days but still try and do as much as I can. I don't share all this to complain but simply to say I have been reminded that no matter what happens on the cancer front, life doesn't stop. All of this, combined with the latest news from the doctor's, had made it tough on Rebecca and I. We are learning each day about simply putting that one foot in front of the other.

The truth is I have been reminded about a lot of things the last couple of weeks. I have been reminded how important the people in my life are. We have had family and friends who have stepped up and gone above and beyond to help us the last several weeks with different needs. We cannot say thank you enough. As I have stated many times this journey cannot be done without each of you. We truly have been reminded that life doesn't stop no matter what we are going through. And I am learning all over again that getting mad about it doesn't fix it or change it. It only makes it worse. I am discovering that I have now have physical limitations that I have to accept, like it or not. So I am learning how to either do things differently or accept the fact that there are some things I may not be able to do anymore. And there have been a lot of things happen that I won't even discuss here.

Combined with all of that, and especially because of the news from the doctor, I am reminded that I have to do my best to let go and trust God. It ain't easy. I have to be honest, I know that on the cancer front, we are running out of options. I have never been so scared. And I am reminded that no matter how bad I want to be, or no matter how hard I try, I am not in control. I haven't learned how to completely let go. I would like to think that I am getting a little better then something happens and I am reminded how I am not. But I still try every day. I do my best to put my trust in God. It's when people like I mentioned above either call or send words of encouragement, or do something to help, that I am reminded how God takes care of us and gives us the strength we need each day. It's the people. It's my family and friends that God uses to help get me through each day. So we continue on, putting one foot in front of the other, and doing our best to trust God. I need to refocus on just enjoying each day that I am given and not worrying about the things I cannot control. So today I will just enjoy the day no matter what it brings and focus on my family.

Remember everyday to put one foot in front of the other, drink a lot of water, and don't forget to breath...............

News from Nashville

This is the first blog written from Nashville. I don't think it will make my writing any better. Sorry. I am also tired and a little grumpy so this one will be to the point. I will say that the drive to Nashville is a much prettier one than the drive to Houston. There are also many more interesting places to stop and visit and we have taken advantage of them so far. But as always we are ready to go home. We will leave in the morning and hopefully be back in our bed tomorrow night.

The visit today was good. We liked the Doctor and staff very much, feeling comfortable with each of them. It was good to get another perspective on where I am at with all of this. He basically agreed with the Doctor's at MD Anderson. He said left untreated I have would have about 6-9 months left. He also agreed that the new drug they are going to put me on is the best option we have at this point. As I have stated before the drug isn't FDA approved yet but can be given to compassion cases like me. There are a few hoops that we have to jump through before we can start the treatment. The biggest one being the drug company has to run test's on it's own of some of my tissue samples. That and the other few things that are required will take about a month. So hopefully we will be back here in a month to finish up the red tape and begin the medication. It is in pill form and is one I will take everyday. I have to come to Nashville once a month to get the medication and do testing. The one thing all of the Doctor's have made clear from the start is that this is not a cure. All of the patients who have been on it so far did well for a while but at some point the cancer came back and was usually worse. He did say that they are learning more every day about why that happens and are working on new medications. He told us this drug will hopefully extend my life until new medications are discovered that will work better. One of the good things is that the side effects are very minimal and should be much easier on me than chemo.

One of the concern's that we have had is that I am feeling worse as of late. I am having more and more days where I simply don't have it in me to do much. I am in more pain each day. We knew these day's would come. One of the things we like about this Doctor is that they are helping us address these issues. They spent a great amount of time talking with us and helping us formulate a plan to work on the pain and discomfort issues. The Doctor explained it to me this way. He said it is like my body is constantly on a treadmill fighting the cancer and it never takes a break. Basically my body never really gets any rest. He said the body can only do that for so long before it just gives out. So hopefully if this new chemo and other medications do their job my body will get a break for a while.

As always after these types of visits we are both wiped out. It continues to be an emotional roller coaster. I think the best way to describe us right now would be numb. There is so much going through my mind right now, along with several other things that have happened over the last week, I cannot even begin to put it all in words. We simply ask for your prayers. Hopefully tonight will bring rest and tomorrow will bring home!

Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breath...........