Friday, November 25, 2011

Too Long

Well I know for those few of you who follow me it has been too long since I have last blogged and I am sorry. To say that things have been rough would be an understatmtent. Yes I am on a new drug and it has been very difficult on me. One issue we are having has nothing to do with the durg. The turmor under my arm continues to grow and in in doing so is causuing the skin to split open and bleed more than it doesn't. And when it bleeds, it really bleeds, not just a little bit. Keeping it under control continues to to be more and more of a challenge. The drug itself is proving to be a challenge as well. It has cuased more nauaesa, more to the point of not eating. I went about two solid weeks without eating much of anything, losing around 20 pounds. I was finally able to eat yesterday (Thanksgiving) so I am hoping we are over that hump for a while.

I went to the doctor here last week for reglularly scheduled blood work and found most of my count's were way out of whack. I won't bore you with the all the details other that to say it wasn't good. I ended up having to have another transfusion and had to be given lots's of fluid. I will go back on Monday for another round of test's and after a conversation with the nurse expect that I will have another transfusion next week and more fluids. (When I say transfusion, I do mean blood transfusion by the way.) When we first got home after my first treatment I was having really high fevers and very loose stools. Part of the side effects we are supposed to watch for. I pretty much have had all of the things you don't want. The simplest way I know to put it is I have been really sick. And scared.

I can say this. I think my body if getting worn out between constantly fighting the cancer and dealing with the side effects of all the drugs they have running through my body. The pain is better thanks in large part to being on a program with a pain doctor at MD Anderson. That has made some things a little easier. But I can tell that things have changed for the worse just by the way I feel both physcially, and emotionally. It has become more difficult on a daily basis. I am able to to alone less and less as things have gotten worse. I am unable to to do for myself more each day which is alway's a difficult thing for me. As you can imgaine that had put a lot more pressure on my wife and parents. Especially my wife and as you can guess she needs lot's of prayers right now.

We all need lot's of prayers and support right now. We go back to Houston on the 2nd of December for the next round of drugs. (That I am not looking forward to) We are talking about seeing if we can maybe move the treatments here and do them with the doctor's here. The trips to Houston are simply getting too hard on me. The doctor's here have proven they know what they are doing with this new drug which was one of the big questions we had when we started it. We should know more in a few weeks. That is all I have in me for now. We needs all the prayers we can get, and thank each of you for your support.

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

Thursday, October 13, 2011

Update

Well the good news is I survived the tests yesterday. It seems the more MRI's that I do, the more I hate them. I am getting to the point I am lucky to get through them to be honest. The older I get the less I like enclosed spaces and not being able to move around. The CT's I can handle no problem. But the other thing is doing all of them in one day, including all the other test's, makes for a really long day. Not to mention the trips themselves are getting harder and harder. All I can say is I will be really glad to be home tomorrow night.

The test results. Bottom line, things are worse. There is a new spot in one of my lungs, and several of the nodules in my lungs are bigger. Several of the infefected lymph nodes under my arm have doubled in size. The latest chemo. has had no effect on the cancer at all. There still is a spot in my brain, but it still remains unchanged and they won't call it cancer. We talked about two other possible drugs. One of which simply hasn't shown much promise. The second, Yervoy (Ipilimumab), is the one we have decided to try. It has shown good results in some people but still not anything to get excited about. It has a lot of very tough and dangerous side effects. It is a drug that we can get at home but the doctor was very clear that due to the side effects being so tough, that he wants a doctor who is familiar with it to administer it. So at this point we are leaning on coming to Houston to get it. I will have to have an IV port put back in my arm. It is a drug that is given every three weeks and should only be about four rounds. We will come back to Houston in three weeks to have the port installed and do some other follow up issues. We asked about why I have been so sick lately. The doctor told us that one reason is probably due to the large mass under my arm. He told us that as it grows the cells in the center die because they aren't getting enough nutrition and as they die they get into the blood stream and go to the rest of the body. Thus causing fever and night sweats and other issues.

Needless to say it was a tough day for Rebecca and I. We even noticed, for the first time, a sense of defeat or frustration in the doctor. I think we all know that the options are getting slimmer, and with me feeling worse each week it is getting tougher. But we will press on, that is all we can do at this point. I am still hoping they will find a magic pill for nausea and vomiting. Well that is all for now. Been a long day and there is baseball on. Gonna see if I can get lost in the game for a few hours.

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

Wednesday, October 5, 2011

Quick Update

Well it was another beautiful fall day in Oklahoma. My wonderful wife and I got to go on an actual date tonight. What a wonderful and relaxing time it was. We actually got to go out to eat and to a movie. I have always loved spending time with my wife, but as you can imagine I value it these days even more. Plus with all the craziness of our schedules and the way I have been feeling we don't get to do it much anymore. Great night baby!

Not to mention today was a good day for me. The last week has been rough with lot's of nausea, fever and vomitting. And the typical no energy. We don't know if it is the cancer or the chemo. At this point I don't know if there is any telling the difference. I just know since getting home from Houston, it has been rough. We did manage to take the kids out of school early on Monday and take them to the Tulsa State Fair. What a great day that was. It always brings me great joy, not matter how bad I feel, to watch the kids laugh and have fun. Mom rode several of the rides with the kids, we ate lots of fair food and did lots of sight seeing. (My favorite thing is the people watching, which is a blog for another day!) It was a great day. The kids are doing good, staying busy as always. Lots of sports and school work. Rebecca is good with another crazy work week and taking care of me.

I have to tell you a story. Last week when Dad and I left for Houston we stopped in a small town in southeastern Oklahoma called Atoka. There is a Dariy Queen there where I love to eat. To make a really long story short, as we were leaving, I backed into a car that was pulling into the parking lot. It was a sweet older lady, and I felt horrible. After the proverbial exchanging of information we left to continue our trip. The following day Dad called her. Come to find out she and her late husband were members of the First Baptisit Church in Ada when Dad was the pastor there. After realizing that they each remembered each other, it was a homecoming of sorts. And after an almost 30 minute conversation two old friends were reunited. So I guess sometimes good can really come from bad. Speaking of driving to Houston, Rebecca and I leave next Tuesday to go back. This is the big trip. Testing to determine if the new drug is working, and decisions as to what will be done next. We are anxious as you can imagine. And no it never get's any easier not matter how many times we do it. So this will be a long week and weekend. Thank goodness there is football to watch. We will have answers a week from Thursday and I will let everyone know what we find out as soon as I can.

Hope everyone is doing well and having a great fall!

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

Monday, September 26, 2011

Acceptance

I was just reading a blog by a friend of mine about change. He used the example of people being against the changes to Facebook, and used that to talk about how life is about change and we must learn to be flexible and accept that change is going to happen no matter what. The real key is in how we handle that. As you can imagine it really struck home with me. My family has done nothing but see change in our lives for the last two years. What struck me was the part about acceptance because that to me is the key to dealing with change. So l looked up several different definitions of acceptance here is the one I liked best. Acceptance: The act of accepting; a receiving what is offered, with approbation, satisfaction, or acquiescence; esp., favorable reception; approval; as, the acceptance of a gift.

I am learning a really good lesson in my life right now. I know that things have changed. I know that things will continue to change, for better or worse. My cancer is proving to be something very uncontrollable. The last week or so I have started having nausea again, being really tired, having a very sore mouth due to the chemo, almost to the point I am having trouble eating. I am also not steeping well. Again writing this at 3:30 in the morning. I know that my body will continue to change, due to the cancer and all of the chemicals they are pumping through my body. I get it. I understand change that is out of my control better than I ever have. What I have a hard time with is the acceptance part. Usually my acceptance comes with an attitude of I will deal with it but I don't have to like it. What struck me is that all of the definitions that I read, somewhere in the definition, refered to accteing being a positive thing. Like the one above stated, "favorable reception: approval: as, the acceptance of a gift". I don't know about you but I don't see nausea and throwing up as a gift. I also know that having a new boss who you don't like doesn't seem like a gift. Nor do new job regulations or requirements. We all have those people we work with or a family member we have to accept as a "favorable gift". Surely an illness or death cannot be seen as a gift. The loss of a job, a cut in pay, an unwanted move, I could go on and on. It's all about those changes that life brings, want them or not.

I think what God is trying to impress upon me is that if I really want to find peace in all of this, if I want to be happy no matter my circumstances, is that I must accept whatever comes with the best attitude that I can possibly have. It's not easy, nor is it done over night. It is, for me, a process over time and a lot of work. There have been a VERY few times in my life where I was able to do that. And talking to and watching others, I realized those times that I and they were able to do that, those situations became non-issues for them. I didn't even think about it anymore. I just went on with whatever I was supposed to be doing, giving that situation no second thought. It didn't let it "rent any space in my brain". Maybe acceptance is seeing whatever I am dealing with as a gift. Maybe I am to focus on the good things that can come from that situation. I should focus on what I can learn through it that will make me a better person. Maybe I will learn what I don't want to be or act like. Maybe it will help me see the kind of boss I don't want to be, should I ever become the boss. It could teach me to be a better coworker. Maybe a better family member or friend. I do know that if I can do any of this, and it's a big if, I will grow and become a better person. It's hard to see throwing up or being nauseas as gift, but I still have to focus on the good. Like, I could be in bed waiting for the end. At least I can walk to the bathroom to throw up! And at least I can walk to my medicine cabinet to get my nausea medicine when I need it. And driinking a malt or shake when I can't swallow food, well they are never bad things! It's ice cream for crying out loud! Is acceptance a gift. Today yes. Talk to me tomorrow and the answer may be different! But what I do know is this, it is another challenge in life that if I allow it, can make me a better person. Change will come no matter what, the question is what will I do with it? And will I see it for the gift that it can be? Stay tuned..........

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

Sunday, September 18, 2011

Update

Well if you live around here and don't love this weather something is wrong with you. Of course the three days of the coolest weather we had here I had to spend in Houston where it was still 100 degrees! But this weekend the rain and cool weather has been great. We truly, like most, needed the rain. It was wonderful to sit last night and watch the thunder, listen to the rain and watch the Sooners beat Florida State!

Several have asked me how I am doing, and more specifically how I am doing on this new drug. The short answer is ok. The long answer is longer, thus being called the long answer. I had gotten rid of the nausea, but it seems to be coming back in the afternoons. I am having some short dizzy spells and light headedness, but luckily I haven't fallen. I am in a lot more pain these days. There are several theories as to why. I feel like there are several reasons, really a combination of many. One, the most obvious, the cancer. Two I think after a year and five rounds of different kinds of chemo. my body is wearing out. After having conversations with my mother and wife, and listening to the things they have read and researched, the chemo. just wears your body out. On top of that having bone and joint degeneration makes me hurt all over. The trips to Houston are getting harder on my body. It usually takes me two or three days to recover from the travel alone. For whatever reason the tests have shown that my liver and spleen are swollen which I am sure attributes to some of the pain. My kidney functions are off and my hemoglobin is still down. I know that may not mean much to most of you, nor to me, but I think they contribute to how I feel. One of the fears we have is your organs can only take so much, and chemo., after a period of time, starts to damage those organs. I think we are starting to see some of that. I don't seem to have many obvious side effects from this new drug. I think my body is getting tired and worn out from fighting the cancer and all of the drugs they have put in my body. THANKFULLY, most days I am able to function pretty well. I do have those days that I can't do anything, but they aren't as often. The biggest obstacle is I still don't have a lot of energy. But as I have stated many times, it could be worse. And I am ever grateful that it is not. Overall on a scale of 1 to 10 I would say that I am about a 5 or 6. GIve or take a little each day. And for those of you who live with pain everyday, I have a lot more respect for you. I am having to learn to just live with most of the pain and it is a tough thing to do.

I also want to take a minute to say a huge thank you to my family. I have been reminded lately how much they mean to me, and what huge sacrifices several of them have and continue to make so that I can not only fight this fight, but get the best care in the world. I have been reminded here lately that this is incredibly hard on them to go through this with me. The bottom line, I may not be here today if not for the love, support, sacrifices, and selflessness of my family. So when you pray for me, say a prayer for my family as well. I am not and have not traveled this road alone and I am so grateful for each one of them. Thank you guys. I love you all!

Well Rebecca and I are going to enjoy our Sunday. It is the only day of the week that we don't have soccer, football, band, school, work, doctor's appointments or anything else. It is our only day to sit on the couch and relax, and today we are going to watch football and chill out. And hopefully refuel for another busy week. I hope that answers some of the questions. And again thank you to each of you for your love and support. We simply couldn't do this without you guys!

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

Thursday, September 1, 2011

August the 30th was the one year anniversary of the second worst phone call I have ever received. I knew in the back of my mind the cancer had returned. But for me it was still hard to hear. My life had changed before that day. The first cancer phone call and all we went through that first year took care of that. I was truly living life differently. I had just been elected the Third Vice-President of the Oklahoma State Fraternal Order of Police. A huge honor and responsibility I was truly looking forward to. Things at work were good. Things at home were great with the wife and family. We were working towards hopefully buying a home. The kids were settled in, all was great. Yet somehow I knew in the back of my mind that if that day ever came, if the cancer ever returned, things would change drastically. If I had only know just how good my fortune telling abilities were.

And so the whirlwind began. Surgery, tests, and finally a trip to MD Anderson began what has been more of a journey than I could ever have imagined. One year later, hard to imagine in a lot of ways, seems like forever in others. I wish that I could say that it has been a great journey of self discovery and growth, during a time where I have been able to answer some of life's mysteries, solve long lived problems, and found a peace that passes all understanding. As I stated above, the year after the initial diagnosis, I was living differently. I valued life more. I slowed down a little bit. I didn't take as many things for granted, put my family and friends first, tired to be better at everything I did. But the changes that lay ahead were more than I ever bargained for. Because of the physical part of the treatments and surgeries I had to walk away from work. Something I have never done before. I was a workaholic. I wasn't able to perform my duties as Third Vice-President like I had wanted. It seemed even during those times I felt okay, I always had a doctor's appointment or a treatment or surgery when a responsibility came up that I needed to be a part of. I slowly had to start to give up the things I loved like fishing or playing golf. In the beginning I could stil do certain things like mow the yard, or work in the shop, things that would keep me busy. But slowly over time I have had to give those things up as well. (The one good thing is I have been able to spend a lot more time with the family and that is always a great thing.) Now days I spend most of my time stuck on the couch or in bed. As I have stated in previous blogs I am much more sick these days. Nausea, vomiting, fever, pain, and on and on. It has become very tough for me. Someone who is used to be constantly on the move. is now stuck doing nothing but sitting. And the trips to different states for treatments are starting to wear thin. And treatments, we are on our fourth different treatment, none of which have worked. And as one ends and another begins, it is becoming more difficult to be positive and upbeat that the new one is going to work. A year later, here we are, still fighting, still trying to find something that will work. And as I knew back then deep down inside, it is getting worse.

I share all of that because I made a commitment to be honest about how I feel. And a many days that is how I feel. Frustrated, scared, tired, sick, and simply worn out from it all. People don't call as much anymore. I don't talk to as many people as I used to. I have too much time to sit and think. So what now? That is a question I have asked myself a lot here lately. What do I do now? How do I continue to find the strength I need to keep on fighting? It is a question that is continually evolving. I haven't gotten there yet. I pray a lot more. I lean on my wife and family more than I ever thought I could or would. Then I make a trip to Houston and walk around and see others who are fighting and I realize several things. One, I am being selfish feeling sorry for myself. Two, I ain't the only one in the world in this position. It could be a whole lot worse than it is. I also realize how good I have it in so many ways. God continues to take care of us. Our needs are met every month, the kids are taken care of, even the dog gets to eat. It's all about my focus and what I chose to spend my time thinking about and focusing on. It's not a complicated or new theory. If I focus on the negative, I will be negative. If I focus on the positive I will be positive. It's really that simple, but not always easy. So I have to work a little harder at it, its good for me. I never thought this would drag out so long either. I don't know what I expected, but I guess I expected faster, one way or another. So, and yes I am going to say it, patience is slowly becoming a lesson I am being taught. Notice I didn't say learning. I am not even begin to explain or give any sort of dissertation on patience. As I am sitting here writing this the air conditioner in our bedroom went out. It's always something.

So one year later we press on. We continue to do our best to put one foot in front of the other. Some days are good, some not so good. The lessons I have learned and continue to learn are sometimes easy and sometimes hard, but in the end it's worth it. And as always I must give my wife a huge amount of credit. She continues to be there for me, and take care of me without complaining, not expecting anything in return. She has had to take on even more now that school has started, taking the kids to practice, school, and all their other activiites. She continues to work and take care of things around the house. She is absolutely amazing. The kids are doing well, busy as ever. We won't know until mid October if the new medicine is working or not. It's another round of hurry up and wait. You would think the we would be used to it by now, but apparently not. It's still hard as ever. Thankfully, at least for the time being, the weather has cooled off a great deal and I am hoping I will be able to get out and work around the yard a little. I think some fresh air and cool weather will do me some good. Thank you again to all of you for your prayers and support. We could't do it without you. Hopefully this new medicine will work at least enough to help me feel better. I will continue to put one foot in front of the other and do my best to focus on the good things in life. Because even in the midst of all of this, there is still more good in my life than bad. And I think it's fitting that I am going through these changes during the change of season's outside. I think for me it's all about growth and knowing that I can change and grow no matter how good or bad things may get. I just have to keep my focus on the good, be open to the lessons that God is trying to teach me, and strive to be the man he wants me to be no matter the circumstances. One foot in front of the other. One day at a time, no, one moment at a time.

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

Friday, August 19, 2011

Catch Up

Well I know it has been a while since I last blogged. We are wrapping up a week long stay in Houston that quite simply hasn't been fun. We have been here since last Sunday. The weeks leading up to the trip were crazy to say the least. School started for all three kiddos, so you can imagine how busy we were, (okay how busy Rebecca was) getting them ready for school. During most of that time I was sick, really sick. I ran a fever, had terrible nausea, and was throwing up. Along with all of that had zero energy. My blood pressure was running consistently around 95/45 and all I did was sleep. I ate maybe once every other day and lost about 10 pounds. Not fun at all. The tumor under my arm continued, and continues to grow, causing quite a bit of pain.

The trip to Houston was to be tested for a new clinical trial. And when I say tested, I mean tested. One of the things they found was that I am very anemic, which is part of what was causing me to be so sick. They gave me two pints of blood in a transfusion on Wednesday and so far it has helped a little bit. On Monday we were at the hospital from 9 am to 9 pm. I had meetings with the doctor and nurses, had a bone scan, had blood work, and had CT scans. We were off on Tuesday which was great because it was my birthday. Wednesday was much of the same, being at the hospital from 8:30 am to 10:30 pm. Thursday was 9 am to 4:30 pm and Friday was all morning with and upper GI. And I can say that not only do I feel like a lab rat, but a pin cushion as well. I have never been stuck with so many needles in all my life. I was tested in every way possible, and it absolutely wore me out. The good news, I guess, is that I qualify for and started the new medication. It is in the second phase and they don't know much about it and don't have a lot of results to go off of. What it does in theory is stop the blood flow to the cancer. Cancer likes a lot of blood flow and cannot survive without it. But being so new we simply don't know what to expect. I have to do a lot more work with this drug. I have to keep a daily log of when I take it, and keep a daily journal of how I am feeling and any side effects. I also, for the first six weeks, have to return to Houston every two weeks for check ups. One of the side effects that they watch closely is that it can cause your blood pressure to go way up. So we will see what happens.

I think we would all agree, we each know our bodies pretty well. In the weeks between the last dose of drugs in Nashville, and this trip to Houston, I knew things were changing. The tumor under my arm was growing at an alarming rate, plus not feeling well, I suspected in the back of my mind that the cancer was moving and growing again. When we met with the doctor on Wednesday my feelings were confirmed. The cancer is spreading and growing again. There is new cancer in more lymph nodes under my arm, there is now cancer in my chest cavity, and there is quite a bit more in my lungs, especially my right lung. It's called metastatic, or in transit. And it is quite a bit more. They noted that my liver and spleen are swollen, but show no masses. As I stated above I am very anemic, and am having some other problems like the nausea and vomiting, which they cannot figure out. I have very little energy and not much of an appetite. I have a lot of pain from the tumor under my arm and deal with it the best I can.

We have been doing this long enough now that when we get bad news like we did in the doctors office we handle it a lot better, at least in the moment. I sat down yesterday and read the report again and it finally sank in that the cancer is moving again, and it hit a little harder. Thankfully it has stayed out of the rest of my vital organs, but knowing that it is moving and growing again, fast, worries us. We hope the new drug will do it's job. And I have to be honest, I am tired. I mentioned in a blog a while ago that this was turning into a marathon and I was right. The other thing I don't like is not being able to do the things I was able to not long ago like mowing and weed eating, working in my shop, playing golf, and working around the house. Most days I am relegated to the couch or the bed. And that is tough for me. Some day's I have to dig even deeper to find the strength I need. But, as always we have only one choice, keep going. Not giving up or giving in. We continue to do our best to put one foot in front of the other and deal with whatever comes. I turned 40 last week and turning 40 is usually a big deal, but for me it was and even bigger deal. Much more meaningful. When all this started two years ago, I didn't know if I would still be here to celebrate it. But I am, and now I am old. Or at least that's what the kids say. And I don't know how old I feel, but I feel old! So we embark on our next phase in this journey, not knowing what lies ahead. But we will continue to try and keep life as normal as possible, and fight with all we have. Next week will be a reminder how life doesn't stop. The kids have soccer practice Monday and Friday, Tuesday and Thursday, and Tyler has football everyday after school. We haven't quite figured out how we are going to pull it all off, but it will be fun to say the least! (And it will be that way for months until soccer is over!) Thank you again for all your thoughts and prayers. We need them now more than ever. I will try and do a better job of blogging and keeping everyone updated.

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

Saturday, July 30, 2011

Another Trip

Well for those who may not know we just returned from another trip to Houston. With school starting soon, and not being able to do anything with the kids this summer, we decided to take them with us. They have wanted to go all along, to see what we do, so we decided this would be the best time. And I have to say that they did really well, they behaved great. They loved the hotel room, especially the 10th floor, with huge windows that you could look out and see lot's of Houston. Not to mention the swimming pool. We had a little bit of free time so we were able to take them to the Holocaust Museum and the Museum of Natural Science. Both of which were very interesting, even for me. The Holocaust Museum was incredible. It was a great reminder to me that no matter how bad things can get for me, it could always be worse. Not to mention not being able to grasp how one human being can do those kinds of things to another human being. But that is a blog for another day. Believe it or not, it was actually a little cooler there than it was here, and I mean only a little bit. And it actually rained several times. Okay, I will stop.

On the medical front, not much has changed. The only scan they did was an MRI of the brain. The good news is it was once again clear. They didn't do any CT scans because Nashville had done them so recently. Turns our Nashville didn't so the same scans MD does, and we were all hoping they had done scans. They were able to tell that the tumor in my left lung is the size of a quarter. The tumor under my arm is growing. When we asked the doctor about radiation to shrink the tumor, he stated they didn't like to use radiation because if they do, and the cancer comes back in that area in the future, any chemo. would be less effective due to the radiation. So we aren't going to do any, especially since I have had so much cancer in that area. Basically what is going to happen now is I will again become part of a clinical trial at MD Anderson. It is a drug that is based upon a drug that was created to fight colon cancer. It has been very successful on the colon cancer, and because of the success was tried against breast cancer but was unsuccessful. And it is brand new so there are no numbers to look at, no success or failure rates, we are starting from scratch. So the next step will be they will call me and set up and appointment for a physical. Then, if that goes well, we will get started on the medication. I will have to go to Houston at least once a month, like I did in Nashville, to have test's done and pick up my medication. It too is a pill I will take everyday, and has most of the same side effects the last one did. That's all we know about it at his point. We won't know anymore until we go back down and meet with the doctor in charge of the study. I would be lying at this point if I said I wasn't a little tired. Tired of trying things and them not working. Tired of the side effects that seem to be getting worse. Tired of not working or doing anything. Tired of traveling to Nashville and Houston. But it is still better than the alternative. So we carry on. We are glad to be back at MD Anderson. That is where we are comfortable. And the doctor who is in charge of the study is in the melanoma group with our doctor there, so that makes us feel better. I also like the drive there better than the one to Nashville.

Well that is about it for now. We are getting ready for school to start. I think the kids are ready, which is amazing. Everything else is well, except for this heat and lack of rain. Hopefully we will get started on the new drug sooner, rather than later. As soon as we know something we will let everyone know.

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

Tuesday, July 19, 2011

Back to Houston

We I am pretty sure that I haven't said this lately but it is hot and dry here. Really hot and really dry. Did I tell you it's hot here, oh and dry, really dry. I cannot believe I am gonna say this but it is making snow look really good, and I am not a big fan of snow. I tried to do some things outside yesterday but it was just miserable and I couldn't stay out there.

I made a commitment to be honest on here so that is what I am going to do today. Last week when we got home from Nashville, I was in a bad place. A really bad place. As I stated in the last blog this is the first time we have never had a game plan. When we got home the reality of it all set in. We are running out of options. No one seems to know what to do and everything we try fails. And I allowed myself to get lost in my head and all of the what if's. Finally on Friday I made myself get up and mow the yard. (And yes it was really hot and dry!) My wonderful wife knows me all too well and knows how to handle me. She quietly supported me, and checked on me, and reminded me that we are in this thing together. We were able to spend and evening together with the kids outside grilling steaks and playing football and it was just what I needed. Then this morning I received and email from an old friend from my childhood days that I have lost touch with. He reminisced about childhood memories and gave me words of encouragement. It was just what I needed. I have had several people who talk about how well we have handled all of this. People have complimented us on our resolve and attitude since this started and overall we have been positive and upbeat. We made a commitment to face this head on with a positive attitude, tried to keep life as normal as possible, done what the doctor's have said, stuck together as a family. And we will continue to do the same thing. We will continue to face this head on with a great attitude, humor, and as much strength as we can muster.

Why I share all of this today is that I am reminded that I am human. I am going to have those "days". I will tell you, this is the most scared I have been through this entire two year journey. I will also say that after almost a year of surgeries and brutal treatments, I have a hard time some days getting excited about doing more. I will not lie, there have been brief moments where I have thought about saying enough is enough. But I can also say that the will to live usually gives me all the motivation that I need to get busy again, whatever the treatment may be. I guess I share all of this because we said we would always be honest about what is going on. And the other reason is to again say thank you to all of you for your thoughts and prayers. It always seems like I get a text message or phone call or email from someone at just the right time. And it isn't about the words that are said, it's about the contact with someone who cares. So thank you. I am much better now, I guess you could say I am back.

On another note, as soon as we got home I got in touch with MD Anderson. After several days of communicating with them we have an appointment next Thursday the 28th. We are looking forward to that and will let you all know what is said and done.

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

Thursday, July 14, 2011

Strange

Well we are home after a very long 10 hour drive. I have to be honest, if I never have to make that drive again I won't be sad. It is a long tough drive and you would think that it would wear me out to the point I wouldn't have any trouble sleeping yet here I am at 4:00 in the morning. I am sure the wonderful 10 hours of sleep I got last night are playing a factor in the sleeplessness as well. I guess I need to find balance in my sleep too.

You know the other thing a ten hour drive allows for is time to think. And with the news we got from the doctor yesterday, I had plenty to think about. (Which may also play into my sleep deprivation tonight.) I thought about a lot. Way to much to try and squeeze into a single blog. But two things keep coming to the forefront for me today. The first is that was the first time we have left a doctors office, through this whole process, without a game plan. All of the other times when something didn't work the doctors had another idea or plan of action to try next. Something to look forward to. Okay, maybe not the right words, but at least a plan of action which gave us the ability to keep going mentally and spiritually. Yesterday, nada, nothing, the proverbial scratching of the head. He gave us a couple of thoughts, but his exact words were, I am just thinking out loud and off the top of my head. Not very reassuring. His last words to my wife, because I had already left the room due to frustration about the way things had gone with the nurses and doctor prior to the final conversation, were don't give up. (And let me say this, one thing we have learned is this is our care, I am the patient and the doctor works for me. And it's okay, as long as I do it in the right manner, to express my displeasure with their timelessness, and manner in which they were doing things. And I did just that. And I finally reached a point at the end that I had to leave the room. It's my life we are talking about and beating around the bush doesn't work with me. I am done with my disclaimer.) And give up we are not. But we find ourselves in new territory. A new kind of limbo. No answers, no game plans, no good place to start looking again for a solution.

And it reminded me that I am weird. The biochemo at the beginning could have killed me, but I was eating cheeseburgers, not throwing up, walking around etc. The regular chemo same thing. A few small side effects but not like most. This last one that was supposed to be easy, bout killed me. And I don't look like a cancer patient. My hair has never fallen out, as bad as I wanted it to. I want to be bald. I haven't lost much weight at all. Was hoping to drop a few. Am still mostly self sufficient. I still have days I can mow the yard, weed eat, work on things and enjoy life, dialed down a little. I don't look like a stage 4 cancer patient. Someone said the other day, you don't look like you are as sick as you are. And I don't. And don't get me wrong I am very grateful for that. I thank God everyday that I am able to do those things when I can. But I am just not typical. Nothing about any of this has been typical if there is such a thing. I am just strange and that's okay. It keeps things interesting. Never boring.

What is the most strange though is the not knowing what to do now. There isn't anything to plan for, or prepare for mentally. There are no plans that need to be made in reference to extended stays in hospitals, or treatments at doctor's offices. There are no scans planned in a few months, or doctor's appointments to ready for. Nothing. And it is a strange place to be. And a quite bit scary. There is nothing to take your mind off of the what ifs. There's nothing to keep your mind busy or occupied. As I stated above, it's a new form of limbo. So time to come up with a plan of action. All we know at this point is I am going to try and meet with my oncologist here at home. Bring him up to date and get any ideas he may have. One of the things that the doctor in Nashville suggested was radiation for the tumor under my arm. If it continues to grow we are afraid it will affect the usage in my right arm, as I stated in my last blog. We will also get back in contact with MD Anderson and make an appointment with them to see if they have any ideas. And hopefully we can get that done sooner rather than later. And that is really about it on the cancer front at this point. What I am hoping for at this point is a great amount of rain so that my grass grows really fast every week so I can mow more. Or maybe I will build a bird house. One with a garage door, motion lighting and a sprinkler system. There is the huge amount of holes the dog is finding necessary to dig in our backyard, but I think I will let the kids fix those. There is always golf for anyone who wants to take me, but I cannot promise I can hold on to the clubs in my back swing. In all seriousness, we continue on. Laughing when we can, crying when we need to, yelling a little when necessary, and putting one foot in front of the other. That's all we can do.

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

Wednesday, July 13, 2011

Upate

Well, I just woke up from a much needed 10 hours of sleep. I haven't done that in a long time. And yes it felt good. I didn't know I was still capable of sleeping that long! And in a hotel room. But now I, we, are ready to go home.

For those of you who may not know, this drug that I have been on has been making me sick. Sicker than most I have done so far. And n0t just a little sick, throwing up, fever, no energy, a lovely rash, and on and on. We met with the doctors here in Nashville yesterday and the bottom line is, this drug isn't working. There has been no shrinkage in the tumors. The one under my arm is actually getting bigger I think. So after discussion with the nurse, doctor, Rebecca and myself it was decided to stop the medication. Now normally, or at least up to this point in this journey, we would have an alternate plan, usually given by the doctor, that we would try. This time we don't. He made a few suggestions, but didn't have anything concrete. So we walk away from a doctor with no plan. A whole new feeling for us. We knew this could happen. But here we are anyway, dumb founded. We are leaving today to head home. I think we are going to take a couple of days to process all of this, talk with the kids, our parents and begin making some decisions. We are running out of options, and we understand that with each option we chose now it is even a little more further out there as far as chances they will work. We have to take many other factors into consideration like, distance of travel, finances, chances things will work, availability etc.

I have to be honest, I am not in a writing mood right now. Please don't misunderstand, please. I am not getting down, being negative, or giving up. I have learned a few things along this journey. One of them is after appointments like this, I need a few days to process it all, feel what I need to feel, need some time to rest, then get back on my feet again. And that is exactly what I will do here. Today is just not the day. Thank you to each of you for your thoughts and prayers, we cannot do it without you. I will write again in a few days when I have had some time to wrap my head around all of this. Pray that we have a safe trip today.

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

Saturday, July 9, 2011

Fear

If I haven't said it enough the last few blogs, it's hot. Really hot. You would think that after almost 40 years in Oklahoma I wouldn't be surprised by the cold in the winter and the hot in the summer, but yet here I am shocked. The only good thing I suppose is that it slows down the mowing. Except that it is one of the things I actually look forward to doing during the week. I am one of the weird few who actually enjoys yard work.

Because it's hot, and I am the only one home, I am sitting on the couch watching TV. With the wonders of DVR we record and watch many shows, including Everybody Loves Raymond. I just finished watching an episode where Raymond goes in the hospital for a routine surgery and has problems. Of course it scares the family. Amid the humor, the underlying theme of the show is how precious life is and the fear of unexpectedly losing a family member. (His character lived of course.) Back to that in a bit. In our quest to be honest, as always, I must say that for the last week and a half I have been in a bad place. I have been more sick than ever before. It's funny how the first treatment, the biochemo therapy, could have killed me. It should have made me horribly sick but it didn't. I handled it well. The regular chemo didn't make me sick either. This new medicine, which is supposed to have minimal to no side effects, is kicking my behind. I have also been in a bad place mentally. I have been bored with no working and nothing else going on, I haven't talked to or heard from many people, haven't slept much, and worst of all have been pushing the family away. Part of the problem is we leave Monday for Nashville. I have a CT scan Tuesday morning and this will be the first test of whether or not the new medicine is working. Obviously that comes with a certain amount of fear and anxiety. Not to mention that trip alone is hard on us.

I have learned something else on this journey we are traveling. We know that more than likely this cancer will eventually get me. It could be months or even years, but with the aggressiveness of it and the statistics, we know what the chances are. You think about it a lot. But you think about it on different levels. Sometimes, like it has been here lately, you get so busy you don't think about it much, and when you do it is a distant thought. Then there are times you think about it from an almost business standpoint. It's about taking care of things in the future, planning. Then you think about it from an intellectual standpoint, the meaning of life, fulfilling dreams, etc. Sometimes, like the last week or so, I think about it without even realizing I am thinking about it. I know something is bothering me but I don't know what. I think it is the minds way of just not dealing with it. And knowing we have the tests coming up I think it was my subconscious way of not dealing with it. Now back to the show. The scene where the nurse comes out to the waiting area to speak with the family, and the wife breaks down in tears, set me off. Completely out of the blue I began to sob. I don't mean tear up, or cried a little, I mean sobbed. Like I haven't done in a long time. At first I thought why am I crying at a comedy? Then it occurred to me, I haven't been dealing with my own issues. Plus I haven't been honest about how scared I am about the tests next week. The tumor under my arm has grown so much it has changed my scars from the previous surgeries to the point one of them opened up in the middle of the night the other night and I woke up having bled through the night. I haven't taken the time to sit down with my wife, like we used to do, and just talked about everything. I have been that person I try not to be, the one who buries his head in life and doesn't deal with reality.

We are scared. One test next week brings many unknowns for us, almost to the point of overwhelming. We cannot make any long term decisions until we get some answers. As I have stated many times before the unknowns are the worst. What will we do if this drug isn't working? If it is working, can I handle being sick like I have been? What if it's working a little bit, but not much? What about work? Will it ever be an option again? What if I can't work? I can't handle sitting around the house much anymore. If it's not working what do we tell the kids? And trust me when I tell you, the reason we try to be so honest with each other and all of you is trying to ignore it or hide from it won't make it go away and just makes things worst. I have proven that the last couple of weeks. We have to face facts and deal with the reality of our situation. And I haven't done it very well. So another lesson learned, at least for now. I would like to say that I have learned my lesson for good, but I know better. We need your prayers next week. A lot will could change in a short amount of time, and we have to trust God that things will work out like they are supposed to. Even if it's not what we want, we have to trust that it's what he wants.

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

Saturday, July 2, 2011

Change

We have a couple of family friends who are meteorologists on local news stations. I used to tease one of them this time of year. How hard can it be to predict the weather, its hot. Very hot. The comedian Bill Engval even used to say when they found the hieroglyphics on the caves in west Texas and translated it it said, man it's hot. It's hot.

I have learned so much 0n this journey we are on. And I am in the middle of learning even more. For those of you who know we have moved to a new place. The reason we moved is because it is on a little over five acres with a fence and is set up for horses. Also it is the exact same amount of rent we were paying for the last place. For those of you who may remember before I was diagnosed with the second round of the cancer, we were looking for a place to buy with land. It has always been my dream to get back to a place where I can have a few cattle and horses, and it's been Rebecca's dream as well. With this place we can at least have a few horses at some point, the kids have been able to get a dog which they have loved. It has a shop back behind the house that is as big as a garage which I have loved. But I have noticed something, no matter how good it is, its change. And change, no matter good or bad, can be tough on all of us. We are having to adjust to a smaller house. Also an older house. The hot water tank has already had to be replaced, we have had a water leak, and one of our breakers keeps tripping. (I have quickly gotten to know our landlord really well!) We got our first electric bill and I about passed out due to all of the fees, the old house bill combined with the new house bill and the fact that we have window units in the new house. Then the dog got hurt trying to go under a fence and cut herself bad requiring surgery and costing us almost $400.00! And I don't care how hard we try, moving cost money so there has been a financial strain that I hadn't expected. Don't get me wrong, it is worth it the more settled in we get but it is still change. On top of all of that I am still adjusting to the new doctor and place in Nashville. I am having to adjust to a new drug and all of the side effects that come with that. Now there is the possibility that we will again change my care to a new place with new doctor's in Oklahoma City. Not to mention not know what is going on inside of me with the cancer. Not knowing what it is doing. Is it getting better, worse, staying the same? Is it moving, where is it moving to? And that is something I deal with everyday no matter what else is going on.

Change, to make the form, nature, content, future course, etc., of (something) different from what it is or from what it would be if left alone. I found this definition of change and it pretty well sums it up for me. Earlier this week I had several days of being what I called "locked up". And I couldn't quite put my finger on it. But it finally occurred to me everything had or was changing and I wasn't handling it well. I had nothing that I felt like I had control of. And yes I know, we ultimately have no control of anything. But when you are an active cancer patient, I don't think feeling like everything, finances, housing, weather, cancer, being out of control is a good thing. It's just like the doctor. At least when you have the same doctor, who knows everything about your case from beginning to end, you feel like you can get mad at them, or argue with them, cry in front of them. But no matter what there is a sense of peace knowing that they know everything about your case. And I know all of the status quo responses to change. If we don't change we don't grow, change gets us out a ruts, change can bring even better things than before, changes can make us better people, change can broaden our horizons, and on and on. And I agree with those things. And this may very well be one of those times in my life. What I can say is this for sure, change is very scary from a medical stand point. There is a lot to be said about keeping the same people in charge of your care, and changing them is scary. And the other thing I can say is that I am afraid that I have pushed away, or at least kept at arms length, the one thing that I know hasn't changed through all of this and that is family and friends, especially my wife. It was right there in front of me the whole time, the one constant, all I have to do is reach out. So I guess maybe I haven't learned as much as I claim to have learned. I guess maybe it's still hard for me to ask for help. The whole male ego thing, or as some have called it, stupidity. But that, on top of all of the other changes going on in our lives, has been tough for me to handle.

So what it is about change. Fear of the unknown? Out of our routine? I don't know. And I know that sometimes change is good, even if we don't see it at the time. But I think that there are times that change may not be good. I don't believe, for me, that I should change just to change. I think for me change should be thought about and looked at before decisions are made. But then when you do that, how do you know what the right choice is. It seems that more times than not we won't know for a while if we made the right decision or not. AAAWWWWW! That's usually how I feel no matter what I chose. I do know this, I think the most important part of the decision making process is motive. What is my motive, or reason, in making the decision. Is it selfish? Was it too quick? Did I look at all the angles? Am I looking too deep, making too big a deal of it? Then there are times that change happens that I didn't plan on and can do nothing about, like cancer. Change that happens that is completely out of my control. What do I do with those times? Again I think part of the answer lies in the motive. Once the change happens the decisions that I make from there have to be made from a standpoint of right motives. Motives that are best for me and my family. I guess the bottom line, no matter whether the change comes from my own decision or just happens, it's what I do with it from there that matters. It's how I handle it. I must first check my motives. Are they selfish or are they right. Are they what I want, or are they what is best. I have to take all the information I can get, talk with my wife, then make a choice and stick with it. I also must learn to be somewhat flexible. Change sometimes requires me to be flexible which is something I am not good at. I like routine. I like things to stay the same, but I can't always be that lucky. I guess the bottom line is, like so many other things in life, is to find balance. To do my best from pure motives, then deal with what comes. Sounds good doesn't it. I will try to do better. Take things one step at a time and do my best to breath. We will see what changes this week!

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

Wednesday, June 22, 2011

Blah........

Well I am writing from a hotel in Memphis. Again, I cannot sleep. Usually on days like this, when we meet with the doctor's, I don't have any problem sleeping. But as of late I have enjoyed few nights where sleep has found me. Usually it's just the night before the appointments I lose sleep, and last night was no different, so now I face driving home tomorrow with Mom on little sleep. And we are a long way from home, Toto.

We did meet with the doctor's office in Nashville today. It was fairly uneventful and we expected that. This was simply a meeting to find out how I am doing and pick up more medicine. The biggest thing is we return in three weeks and will have a CT scan done. That is big because it will tell us if the medicine is working or not. To say the least, it is going to be a long three weeks. We should also know more after that appointment about switching my care to a place in OKC. I worry as of late because I am not feeling well more and more days. It is probably side effects from the new drug. I have had several days that I have thrown up, felt like I had the flu, and don't have any energy. My pain is about the same but I deal with it on a daily basis. And I have have to be honest, I have been a little down and frustrated with all of this. We are coming up on a year of the second coming of the cancer. Almost a year of treatments, doctor's visits, driving all over the country, surgeries, needle sticks, medicine, sleepless nights, day's in bed, crazy dreams, pain all over my body, fear of the unknown, frustration with the slowness of it all, finances, sunburns, trying to communicate how I am feeling, and the list goes on. I would like to say that I am trying not to complain but I guess that is exactly what I am doing. I am writing this at 3 a.m. for crying out loud. In our quest to be honest, I guess I honestly have to say the last few days I have been really tired of it all, and frustrated with the progress of it, or lack there of. My Mom came with me on this trip and on the way here we had a great chance to talk. One of the things we talked about is how we have managed it all, while trying to stay positive and forward living. I think for me the answer isn't that complicated, it's not rooted in some great spiritual mystery, nor is it something that is found through a search of the greatest books in the world. It's really very simple, just keep going. I also think I have learned that these times, like I am going through now, are okay. In our quest to be honest I must say that right now I am not okay, and that's okay. I am mad that I am sick, I am tired of being sick, I am scared of what I cannot see in the future and I am mad and tired about that. What I must do is feel it, be honest about it, deal with it and move on. But the real key is simply to keep going, to put that one foot in front of the other. And don't get me wrong, it may be a little more complicated but not much. I find the strength to put that foot in front of the other from my faith in God, the love and support of my family and friends, and that hope and trust that God is in control. And I also know that if I keep moving that God is faithful and this too shall pass. I really think that sometimes for God it really is that simple. All he asks of us is action. To move. To not stop. To not give up. And he will take care of the rest. So that's what I am doing. Moving. Action. One foot in front of the other. I may do so with a little grumpiness, but I do it none the less, and that is okay.

That is where I am. I need prayers for sleep. I have found that all of the other things that I deal with, whether spiritual, physical or emotional, are much easier dealt with when I can sleep. I got a prescription for a sleep medicine so I am keeping my fingers crossed. We got moved into the new place last weekend and it is incredible. The kids love it. They finally got a dog and have spent a ton of time playing and laughing with her and it has been a joy to watch. Tyler has already begun to build a fort out in the pasture and I am getting settled in my new shop. I don't think the kids have spent a total of three hours inside the house since we got there. You always have doubts when you make a move like that, or at least I do, and since seeing how much we all enjoy it, those doubts are gone. It was the right move. Every thing else is good. We are waiting to have our phone, Internet and TV set up so if you send me a message and I don't respond just know we may not have Internet yet, but as soon as I can I will. (We don't get the TV set up till the 27th and to be honest I don't miss it yet!) Oh and if you might be wondering about house warming gifts, I could use tools to fill my shop up! Just kidding. (I love Lowe's by the way.) We do need prayers though. As I stated above we seem to be going through one of those periods, and we know it will pass, but we can always use all the help we can get. Thank you again to each of you, we love you guys.

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

Monday, June 6, 2011

Drug

I wanted to take a moment and thank everyone for the messages and phone calls about the new drug that was on the national news the other evening. It makes us feel good and reminds us that all of you are fighting the fight with us.

The drug that they are referring to is the same drug that I have just started. The reason that it is now making news is that it is getting closer to FDA approval each day. Anytime there is any kind of promising new drug that is about to come out it receives a lot of press, thanks to the drug companies. As it approaches final approval, and the drug companies know that it is going to be approved, they began to push it. I didn't see the news story itself, but I am sure that it was a good story. And it is a true story. The drug has shown a lot of promise for a lot of people. One of the positives for us will be that when the drug does receive final approval it will at some point be available at a pharmacy. Which for us means that we will no longer have to drive a great distance to get it. Which is always a good thing. Rebecca found a related article about the drug to make sure it is the same one we are on. In the article, in the last paragraph, it talked about the fact that unfortunately this isn't a curative drug. Which is part of what I talked about in the blog after our last trip to Houston. In short, with my kind of melanoma, the cancer itself has mutated. This new drug is specifically designed to attack and kill the mutation. Where it has shown promise is in many people it is effective at killing the mutation and therefore the cancer. The bad news is that in every case so far, the cancer creates a new mutation to defeat the drug and in doing so comes back stronger than before, thus spreading the cancer further and faster. The problem is there is no drug to fight the new cancer once it returns. What this drug has done for some is simply extended lives. The doctor's in Tennessee told us that this is the hope for me, that it will extend my life. They are already working on drugs that will kill the new mutation, but they are in the very early stages and don't know much about it. But, it does give us hope and that's what is important. I was talking with a friend of mine the other day who has a family member who is fighting cancer. He was sharing with me a story about a woman he was talking to who was losing a family member to this horrible disease. He told me that while sobbing, she made the statement that she had no hope. It broke my heart. Without hope, what do we have. I cannot imagine. We have hope. Thanks to our belief in God, to all of our family and friends, to knowing where I will go should I not make it, I still and will always have hope.

That is a little longer version of where we are. I hadn't gone into detail before now because I didn't think it was necessary to bore you with the details. But with all of the responses we have gotten from the news story I felt it might help to explain it the best I can without losing anyone. Being a few weeks into the new treatment I can say that I have some side effects to deal with. I haven't felt well the last several days. Last Saturday I was throwing up and ran a slight fever. The last few days I have run a slight fever with other flu like symptoms that seem to get worse as the day progresses. My energy level is down again, but hopefully if it goes they way they said, this will end over the next week or so. In spite of it all we are still busy as ever and preparing to move. We found a place with 5 acres that is set up for horses and animals and gives us some room to spread out a little. It will give the kids a great place to play and get outside while hopefully teaching them the value of taking care of a few animals and having other "chores" to do! Plus it gives Rebecca and I something we have always wanted, a place with land to garden, raise a few horses, and a great place to sit in the mornings while we drink our coffee. And yes I hate moving, so pray.

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

Monday, May 30, 2011

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..............

Saturday, May 21, 2011

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.............................

Friday, May 20, 2011

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...............

Sunday, May 15, 2011

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...............


Saturday, May 14, 2011

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...............

Monday, May 2, 2011

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...........

Tuesday, April 26, 2011

Prayer Request

I just posted a new blog before this one, but this one is much more important. Our family needs more prayers. First of all, my uncle's wife, Leah, has been battling an unknown infection and other associated problems. She still needs a lot of thoughts and prayers as the doctor's continue to figure out what is going on. My cousin Tom, who lives alone in Austin, Texas, lost the sight in his right eye several weeks ago. Further testing has revealed a tumor on his right optic nerve that will require surgery on Wednesday of this week. It will be a major surgery, removing part of his scull, and removing the optic nerve. (I think.) He will be in ICU after the surgery. We also ask for your prayers for Rebecca's brother, Brian, and his family, as he does what our country asks of him in Afghanistan.

When it rains it pours. But, as I have said many times, we cannot do this without each of you and the thoughts and prayers you have continued to offer up for us. We pray simply for peace, guidance, and comfort. Thank you again to each of you.

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

Monday, April 25, 2011

It takes a village......




I am noticing things more these days. Or at least I am paying more attention, escpecially to things spiritual. The things God wants to show me. I don't know if it's the cancer, or just getting older. Probably a combination of the two. But I noticed something this Easter weekend. Rebecca's brother is in the Army and was sent to Afghanistan last week. His wife and 19 month old came down and stayed with us over the weekend for Easter. On Saturday, she and Rebecca left me with Nathaniel while they went to run some errands. I know some of you are shocked, but really, I can babysit! We had a pretty good battle of wills after mom left, but once he realized he wasn't going to win with me he was great. At one point he fell asleep and I thought about the saying, it takes a village to raise a child. And it got me to thinking about my childhood.

It takes a village to raise a child. I know we don't live in villages here, but I really think that it still applies to us today. At least as I look back on my childhood, it applied to me. As a parent now, I realized Rebecca and I are very careful who we allow our children to be around. (It may also have something to do with what we do for a living too!) But we associate with adults who are like minded, have the same values, and raise their children much the way we do. We don't allow our kids to spend the night with a family we aren't familiar with or who do things drastically different than we do. We spend our time with others who have the same values and belief system we do. The people who watch our kids know that they have the right to discipline them when necessary, but we also trust them to teach them the same values we do. I also hope that our kids will feel comfortable talking to them if they need to.

As I look back on my childhood I realize there are many people who have influenced my life and helped me become the man I am today. I understand that my parents had the same values, outlook, and attitudes that Rebecca and I do when it came to the people I was around. Being a preachers kid who moved a lot, there were a lot of people. Not to mention the coach's, teachers and others who influenced me. And as I look back I grasp the value of my parents wisdom in who they allowed me to spend time with better than ever. I guess, like many other times in my life, it took this weekend with Nathaniel for me to really get it.

I am going to do something I try not to do very often. I am going to name names. I don't, not because I don't want to, but because I am always afraid I will leave someone out. So if I do I am sorry. As I stated, there have been many. Jim and Mary Morrison, Rob and Kathy Gandy, Doyle and Faye Jackson, Ken and Laura Lovett, Janice Ogden, Mike Lewis and the list goes on. But there are two in particular that I want to thank. Gene and Katie Reeves. You have to understand. Their son, and my best friend Shawn, spent more time together growing up than any of us can remember. When we lived in Ada, Oklahoma we were together every chance we got. I spent hours and hours at their house and with their family. And I realized this weekend a big part of who I am today is because of Gene and Katie. They taught me about work ethic, honesty, commitment, and more importantly love and the value of family. Gene taught me what it meant to be a man who loves God and takes care of his family. Katie taught me the value of that family, and just like my mother, how a wife is supposed to be. I will never forget the love and acceptance I always felt there. Shawn and I did a lot of things wrong and got in trouble, but I always knew they loved me no matter what. I could go on for hours but I won't. But I want them to know I now realize what a huge part they played in my life. Much of the fight that I have right now to fight the cancer, and the commitment to never give up, came from them. Gene and Katie, thank you. I love you guys.

And it's not just them. It is everyone who has touched my life through the years that gives me the strength to fight each and everyday. It truly takes a village to raise a child, and for all of my villagers, thank you. I am here today because of each of you.

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

Wednesday, April 20, 2011