Sunday, November 28, 2010

Strange

I am experiencing something new tonight. It is 11:30 and I cannot sleep. Sleep is usually not a problem for me when I am well, and it definitely hasn't been a problem since I started my treatments. But for whatever reason I finally gave up and got out of bed. So I figured it may be a good time to do a little writing.

I find myself in a weird place the last few days. I am not sure quite how to express how I feel except to say I feel somewhat lost. I think part of the problem is I don't feel sick. My family and I are still amazed that I am not having any major side effects from the treatments. Nor do I have any physical problems from the cancer. I have to remind myself sometimes that I am a stage four cancer patient! I guess the biggest issue is that I have very little to do right now since I am not working. I used to think it would be great to be in a position to not have to work. Well I was wrong. And what makes it harder is the fact that I feel fine most of the time. Don't get me wrong, I am not complaining about feeling good, I am very grateful for that. But it makes the down time harder. Another problem is because of the pick line in my left arm, and the lympedema in my right arm, I am restricted to lifting less than ten pounds. I also have to be very careful not to cut or hurt my right arm. That can lead to an infection which would be bad for me. I guess the bottom line is the boredom is getting old. In the big picture of things we are so very grateful that things are good and boredom isn't going to kill me. It's just another one of those things that I call "cancer fallout" that I didn't expect. It's actually kind of funny now that I have talked about it. Oh well maybe it's time to start reading more cause I can tell you there is nothing on TV most of the time!

We got a piece of news today that was a great relief. I haven't blogged about it because we didn't want to make a big deal out of it at the time. Brianna, our nine year old daughter, has a birth mark that had two moles in it that were changing. We took her to my dermatologist before we left for Houston to have it looked at. While we were in Houston her grandmother took her back to the doctor to have them removed and sent off for testing. Of course, under the circumstances, you can imagine our fears while waiting for the test results. They were negative, praise God. I have blogged before about my belief's about God not giving us more than we can handle. I can honestly say I don't know what we would have done, especially Rebecca, if things had turned out different. Thank God we didn't have to "handle" that!

I start my search tomorrow for a doctor here at home who will simply follow what the doctor at MD Anderson prescribes for my treatments. We really would like to stay at home for the next round and any that may follow. We should have an answer by the end of the week. Keep us in your prayers that we will find the right doctor. We will keep 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, November 27, 2010

Home

Well it is Saturday the 27th of November and I am on my favorite spot. The couch! If I haven't said this enough, it is good to be home! Rebecca and the kids got the Christmas stuff out yesterday and got the house decorated. So I am looking at a beautiful tree, with a fire in the fireplace and the stockings hung on the mantel. Okay, I will stop, I am sounding like a Christmas carol. But it is beautiful and starting to feel like Christmas.

It was great to be home for Thanksgiving. The kids were excited to see us and we were excited to see them. The tradition in our young family has quickly become we spend Thanksgiving with her family and Christmas with mine. She has a much, much, larger family than mine and for them Thanksgiving is the holiday everyone comes together if possible. It was great for Rebecca I know. If you don't know, her parents and one set of grandparents, are missionaries in the Philippines. As most of you know her mother flew back to Tulsa when we found out we were going to spend so much time in Houston. While we are gone she stay's at the house and takes care of the kids. Her father and sister were able to come home as well last week. So on Thanksgiving there were around thirty people in here uncle's house for the day. It was a great day for everyone I know. I am just not used to that many people in one house! I wasn't having the greatest of day's physically and one of the fallouts from the treatments is I seem to not be able to handle a lot of noise and people. I managed to stay for a few hours before going home and sleeping.

I share that to say this. I want to say a huge thank you to her parents, Gary and Jeannie, and my parents, Larry and Judy. All of whom have made huge sacrifices to do whatever has been necessary to help my family during this journey. It was not an easy or cheap task for Jeannie to drop everything she was doing in the Philippines and fly home for such a long period to help. It wasn't easy I am sure, for Gary and Rebecca's sister Sandra, to let their wife and mother go for such a long time. And it couldn't have been a bigger help to us to have her here with the kids. It allowed them to stay in their own house and keep as much of a normal routine as possible.

My parents have made two trips to Houston with us, which was the plan from the beginning, to help Rebecca and I while there. They have spent a lot of money on travel and lodging and food, not to mention a sacrifice of their time and routine to do whatever has been needed. They have sat with me in the hospital and during treatments, done our laundry, and been with us every step of the way. They have put their lives on hold for us.

During this Thanksgiving season, and trying to focus on what I am grateful for, I have thought a lot about the sacrifices that both families, and especially our parents, have made for us. I understand it more now that I am a parent. As a parent and someone who is now responsible for and to others, I realize what a sacrifice it has been for all of them. It has also been a tremendous reminder for me of how important family is. All families, I think, have times we may not agree with one another, may even get mad at each other, but no matter what when it comes down to it, we stand together and support each other without question or fail. And family and friends truly are what matters in life. Period.

Mom and Dad, Gary and Jeannie, we will never be able to repay you for all that you have done and continue to do for us. And there are no words sufficient to tell you how grateful we are for each of you. But, thank you very much! We simply would not be able to do what we are doing without each of you and the sacrifices you all have made.

We love you!

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

Friday, November 19, 2010

My Wife

I am sitting, once again, in the hotel in Houston. It is a beautiful morning here. It is cool at night, just perfect enough to open the windows and enjoy the cool air. As much as I am enjoying the weather, I am ready to get back to Oklahoma and I don't care what the weather is like there! There is simply no place like home.

The title of this one is my wife. I have been on Facebook the last few minutes chatting with some friends. Both of them, as they always do, asked about Rebecca. As I sit in the quiet in the other room, it got me to thinking. What an incredible woman she is. I realized that some times it is so easy for me to get caught up in my own physical pain, the cancer, and all that comes with it, I forget what she must be going through. She gets as close to cancer as a person can without having it themselves. I have been reflecting back on all that she has done, and the emotions that she must be feeling as we go through this journey. I realized on such an acute level, what an incredibly strong woman she is. She keeps this family running. She makes sure that the kids have what they need, making sure they are in basketball, at practice, have rides home from school, keeps the house clean when we are home, grocery shops, cooks and works as much as she can while at home. With me, she keeps my schedule of blood work and doctor's appointments straight and keeps my medicine filled and makes sure I take them when I am supposed to. She has to flush my pick line everyday and has to change the bandage on it once a week. Just changing the bandage takes about twenty minutes and isn't an easy task. She and my mom had to take two classes at MD Anderson just to learn how to change the bandage! And when they did they had to demonstrate on me that they knew how to change it properly before they would let us leave the hospital. Whenever I take a shower she has to wrap and tape it with cling wrap to keep it from getting wet. Whenever we meet with the doctor's she is the one who takes notes, asks the important questions and then helps me understand what was discussed. She leaves the kids for an entire week each time we have to go to Houston. Never easy for her or them. She is my public information officer, nurse, family CEO, mother, partner and best friend.

But what I have been thinking about more this morning is what she must be going through emotionally. What a strain all this must be on her. But more than that, I tried to mentally switch roles and put myself in her place. I couldn't do it. As a spouse, the worst thing you can hear is that your partner has a disease that could take their life. Especially for two people who are so young and at the beginning of their marriage. (Yes, I said young. 39 is not that old!) I know that her fear is as much as mine has been through this journey. One of my biggest struggles from the beginning has been, this isn't fair to her or the kids. But life isn't fair. But she keeps going, putting one foot in front of the other, and not one time has she complained. Not once has she whined, griped, asked why, or complained about what she is going through. She simply does whatever needs to be done and does it with an attitude that makes me jealous! She is our rock, steady and strong and level headed when the rest of us aren't. She laugh's and jokes with me when I am down, lovingly get's on to me when I need it, calms my fears when I am scared, and gives me strength everyday. She know's me better than I know myself. She has stood beside me, without question, everyday. She is an incredible woman, wife, and mother who deserves all the credit.

Thank you Rebecca for being with me and teaching me what unconditional love is really all about. I love you!

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

Thursday, November 18, 2010

Before and After

Good morning from Houston. I am sitting in the hotel this morning as I write. I thought it might be interesting to do a before and after all in the same blog. We'll see how it works.

We had a full round of test's done yesterday. I had a CT Scan, MRI brain scan, X-Ray's and blood work. We meet with the doctor at 11:30 today to find out the results. As I stated in a previous blog, the doctor told us last round that they want to see a 25% reduction in the tumor sizes to continue on with the current treatments. If there isn't that reduction, the doctor stated he would stop this treatment program and look for a different one to try. Obviously the hope is that this treatment is working and we will be able to continue with it. (If it is working we will check into the hospital tonight and begin round 3.) I wish I could say that I am 100% confident that all will go well today and we will be in the hospital tonight, but I cannot. I am praying that it is working, but I cannot help but worry about it. Obviously we had a lot of hope going into this treatment that it would rid my body of cancer. And I know we will be disappointed if it is not working. The other fear is each time something doesn't work, there are fewer options left. I think I do a pretty good job being positive most days, but as we draw closer to the appointment today, the more apprehensive I become. So we are saying a lot of prayers, and hoping for the best. And when I return to finish this blog we will have our answers.

The after. Well the news wasn't the worst in the world, but wasn't the best either. Actually let me clarify, it wasn't what we were hoping for. It was still good in some way's though. It was a roller coaster ride from them time we walked in the office. We alway's meet with a Physician's Assistant before we meet with the doctor. When the assistant came in she gave us copies of the reports from the tests. They were not so good. Then when the doctor came in he told us to ignore the test results because they were wrong. The bottom line is that the smaller tumors have shrunk. The larger ones have shrunk as well. But none of the shrinkage is significant enough to continue with the current treatments. That is still good news. The better news is there are no new tumors, my brain scan was exactly the same as it was before, with no new growth and the one spot they won't even call cancer hasn't grown any either. The treatment's. With the last treatment's there were five different drugs. Three types of chemotherapy, Interluken 2 and Interferon. We originally thought the doctor would suggest an entire new treatment program. Either some sort of clinical trial or some new drug. What he suggested was continuing with the three types of chemo., eliminating the Interluken and Interferon. In his experience and along with numbers from clinical trials, chemotherapy shows better results. In the clinical trials the Interluken and Interferon showed around a 15% success rate. The chemo. showed a 40% success rate. Combining them showed a 50% success rate. Obviously it is different with each person, and it is not as effective with me as they had hoped. The other problem is the Interluken and Interferon are both very toxic drugs and hard on the body. He believe's the success we have seen so far is due to the chemo. So the plan is that we will continue the chemo. We will start the next round here on Saturday. Each treatment is 4 days in the outpatient clinic. (No more nights in the hospital!) The doctor said it could consist of up to 6 treatments, with another round of test's to follow round 2. We will reassess at that point. I will also most likely have to have surgery to remove the larger tumors in the lungs and under my right arm. The best news of all is that we will be able to do the treatments at home, with a few trips back to Houston for follow-up's. We are going to do the first round here simply because we are already here. But we should be home in time for Thanksgiving! So it isn't all bad. Obviously we were hoping for your cured, go home. Oh well, it could always be worse. And we are grateful that it isn't. Thank you for all of your prayers, thoughts and messages today.

Well that is the latest. We will spend tomorrow being lazy and then get started on Saturday. We are both very tired. The last several days have been emotionally taxing, and now that we have some answers we are crashing. We will continue to keep everyone updated as we go.

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

Sunday, November 14, 2010

Soap Box

Okay, I am going to do something I try not to do when I write. I am going to get on a new soap box. This blog isn't intended to be a place where I preach or judge. But it's also about me being honest about where I am at in life and the lessons I am learning as we go through this journey. We had something happen this week that opened my eye's to something I have been guilty about too many times in the past. But this instance made me realize how much I can hurt someone else. As I write this, I am writing to me more than anyone else.

Have you ever played the game, especially when young, where a large group of people sit in a circle and someone whispers some statement in the first persons ear, then they are to whisper to the person to their right the same statement? The point of the game is each person is supposed to tell the secret to the next person, then the last person in the circle say's the statement out loud. The gist of it is that the last person never get's the statement correct. It's actually amazing how much the secret changes by the time it get's to the last person. The point of the game is to talk about rumors. What happened this week was a rumor. Wednesday morning I got a phone call from our best friend. They were very upset because they had heard that while in the hospital on Monday night for my fever, that I had a brain scan done and they found more cancer and gave me six months to live. And when I say upset I mean upset. I finally convinced them that there was nothing further from the truth. But as I hung up the phone I found myself upset they they were upset, and angry that someone would start that kind of rumor. (For those of you who don't know me very well, I am very protective of the people close to me.) I later spoke with a few other people who had heard the same thing. I had to stop myself from not trying to find out who started the rumor!

As I calmed down I began to think about rumors. I realized for the first time in a long time that rumors, whether started intentionally or not, and I don't think this one was, can be devastating to people. And believe me when I tell you cops are the worst. But it got me to asking questions. Why is it that our culture feeds so much on rumors? Why can't we learn to just keep our mouths shut when it doesn't concern us? Is it that we need to feel better about ourselves to see or hear others in pain or trouble? Is it a center of attention issue, where we want others to listen to us? I am not a shrink and I don't have the answers. All I can do is answer for myself. I know in the past when I have perpetuated a rumor, it was because I wanted to look others to look at me as someone in the "know". I wanted to appear smart and wise with my dissertations that usually came after sharing the rumor. I would cover the rumor with those dissertations to make others think I was doing it because I cared about the person who I was talking about and knew what was best for them. (Even though they weren't there to hear it!) I did find pleasure in others pain or trouble. I did enjoy the "juicy" rumors about others. I am guilty of all of it.

What this is teaching me is this, mind my own business. I have a friend who used to say, "if it is past the end of your nose, it is none of your business". He is right. It is helping me to see that what I say, whether true or not, can be detrimental to someone else. Rumors, true or not, can damage someone's life forever. I think it is why the scriptures talk about the power of the tounge and the necessity to keep control of it. I need to simply focus on my life and responsibilities. It is also helping me to look inward and find out what it is in me that feels the need to talk about others. I need to work on my own insecurities and character flaws. I need to be more compassionate about others in general whether I like them or not. I need to learn to be less selfish every day. I really need to learn to think before I speak. I need not focus on anything past the end of my nose, period.

No the rumor is not true. I had no scans and nothing new was found in my brain. We leave tomorrow to head back to Houston. I have a full battery of test's scheduled for Wednesday and we will know more on Thursday when we meet with the doctor. And please, if you hear any rumors about my condition, call us and find out if it's true. I don't want what happened to our friend to happen to anyone else.

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

Thursday, November 11, 2010

Behind

Well let me say sorry for not writing sooner. We have had a few health issues since returning home and I simply have had days where I haven't felt like doing much. It's good as always to be home! It's getting harder each time to get motivated to make the trip south. I just don't like being away from home! I am truly a home body.

The last round of treatments went well once again. I did have two days of my first real bout of nausea on the last day. I am really grateful I haven't had to deal with that any more than I have. It is not fun. The side effects were about the same otherwise. On the day that I was released they gave me a shot that is to help encourage white cell growth and to help boost my immune system. When we got to the hotel room that evening my fever spiked to 102. After speaking with the doctor they felt it was probably caused from the shot. We stayed in the room that evening and stayed the next day. My fever broke and by Friday I was feeling good enough to drive home. I felt good on Saturday and Sunday. Monday I started feeling bad and my fever spike to 101.5. We then went to the emergency room, as instructed, and once we got there my fever was almost 103. They took blood, did a chest x-ray, and started me on antibiotics. Of course my fever had broke before they started any medication! They still sent me to Tulsa to the hospital to keep me overnight for observation. After a night of observation and medication they could find nothing wrong. All of my blood work was fine and my fever never spiked again. I am having problems with my right foot and ankle. It is an old injury but in essence I have torn ligaments and bone fragments in my right ankle. I was scheduled to have surgery on it in October of last year but obviously once the cancer was found last year it took precedence over the ankle. The doctors in Houston say that one of the treatments I am receiving can cause joint and bone issues, especially in areas where there were previous problems. The bottom line is now my right foot and ankle are swollen to the point I cannot bend my toes or walk on my foot and hurt all the time. More fun, let me tell you! Other than that, I feel fine now. I am not dealing with any other side effects and am grateful as always for that.

Not much else is new on the medical front. We will leave next Tuesday for Houston. I am scheduled to have tests done on Wednesday and Thursday. We are very apprehensive at this point. As I stated in my previous blog, if the test's show no change in the tumors the doctor stated he will stop this treatment and we will have to look at other options. Obviously we are worried because it would mean that we are running out of options. Keeping with the theme of honesty, it is hard on us right now to even think that way. We may have some big decisions to make next week, so for now we are trying to focus on just being at home and enjoying time with our family and friends. It's not how I wanted to spend my thanksgiving but it also helps remind me that I still have so much to be thankful for! Keep us in your prayers next week. As soon as we know more we will let everyone know.

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