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

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

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

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

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

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