Random Pictures

Spring Time

Well again it has been a while, I know. I go through "moods" I guess, one may call it a time of speechlessness. Bottom line, I haven't felt much like writing. The mood hit this morning, even though I really don't have a lot to say! Things are good at the Wileman's house. I got to see my new nephew a few weekends ago. My brother Jared and his wife Lindsay have a new baby boy, Parker Thomas Wileman, who is the cutest kid in the world! My brother, sister and I and all of the grandkids were at Grams and Papa's house a few weekends ago and it was great to be together. We have been doing a lot of spring cleaning and working in the yard a last few weeks. The garden we built is doing great. (I included some pictures of it and the "herb table" we built.) It has been a far more enjoyable than I ever imagined. It is very fun and rewarding to build something, plant things, and watch them grow as we try our best to take care of them. We have redone all of the flower beds and I have worked on the grass that still doesn't want to cooperate. Rebecca and I spent the entire day working outside yesterday. It's our "escape", therapy, and quality time together and we love it. Even though I will spend the rest of today on the couch in pain, it is well worth it. The picture of us, by the way, is at the Houston Astro's game from the last trip we made down there.

For any who may not have heard, our last trip to Houston was just a meeting with the doctor to discuss the next step. They are sending me to Nashville to Tennessee Oncology. The gist of it is we are running out of options. The doctors in Houston feel the next best step is to try a new drug that is not FDA approved, but is available for compassion cases. (Those like me who are stage 4 and nothing else is working.) The drug is specifically designed to target melanoma with the BRAF mutation that I have. It show's good results initially but from what we have read for most people the cancer comes back and comes back worse than before. The doctors in Houston even warned us about it while we were there last time. So we have an appointment on May 2nd in Nashville. It isn't a guarantee that we will get on the drug. The doctor in Nashville will make that decision after our meeting. So we push on. I think the worst part of this for Rebecca and I is the unknown. Not to mention we aren't excited about starting over with a new doctor, new place, new drive, new hospital, new everything medically. I am definitely being removed from my comfort zone in Houston. We won't go back to there unless this drug doesn't work and the doctor's in Nashville can't help us anymore. So, Nashville here we come.

I am feeling ok. I still have issues from the side effects caused by the chemo. We have had a lot problems with my incision from the last surgery. The glue and tape they use to close it up doesn't like my body. Part of the incision opened back up after surgery and we have been having to baby it to get it to close. More wound care, dressings, gauze pads and time caring for it. You would think that we would be used to it by now! I have such a great wife who does a great job caring for my wounds. I am trying to do more physically to get some strength back. I am getting there slowly but have to be careful not to over do it. The kids are doing good, looking forward to the end of school and summer time. Rebecca is well and still putting up with me, thank goodness! We are getting ready for Easter weekend and time with Rebecca's family. That's all for now. We wish everyone a great Easter weekend and hope you all can spend time with family and friends. That is after all, what really matters.

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

Surgery

Well we are back in the hotel room after being released the day after surgery. I feeling better than I expected. I am swollen and sore, but the pain isn't as bad as I had anticipated. I have another drain tube to deal with for a week or so, and can't say that I am real excited about it. Over all, the surgery went well. There were no complications or problems. The surgeon told us this morning that he was able to remove a little over a third of the tumor. He told us he couldn't remove it all because the end closest to my arm pit had grown around the artery that feeds blood to my right arm thus preventing him from cutting into it. Another part, around the bottom, was lying across a nerve bundle, also precluding any cutting. So there is still some tumor left. One of the reasons for the surgery is so that the T cells from it can be harvested. One of the things they can do is harvest those cells, which means separating them from the tumor, "clean" them up, and then put them back in my body. Once they are healthy and put back, the theory is they will target the bad cells and kill them off. It is a long shot in several ways, but it can be a last case scenario if we get to that point. I get the feeling after the last several days, that it may be the biggest reason for doing the surgery.

As for any further treatment it is still up in the air. We still haven't met with the oncologist. We did speak briefly with his Physician's Assistant on Monday. What we found out is that I do have the mutation they were looking for. (From the biopsy we did here last month.) The good news is that there are two drugs right now that are showing promise in treating melanoma, but only if you have the mutation. (It's official name is V600E, sounds like a motorcycle I know.) Neither are FDA approved as of today, but both can be used for compassion cases like mine. On a side note, a compassion case is someone like me who is stage 4 and other treatments aren't working to kill the cancer. As you can imagine I don't like the term compassion case. But it is the reality of the situation for us. The one that seems most promising for me is only available at three places around the country. The closest to us is Nashville, TN. So there is a possibility we may have to start traveling to a hospital there. Having not met with the doctor, we just don't know anymore. And we don't know when that will be. We are waiting for them to schedule an appointment.

I will be honest. I have been a bit frustrated with the doctor here in Houston as of late. There has not been much communication with us, phone calls have gone unreturned and lots of questions remained unanswered for us. Personally, I don't like going for so long without some sort of treatment, given the history of my fast moving and growing cancer. Especially being here and not being able to get those answers. But we press on. This has definitely turned into a marathon and not a sprint. And I have been more a little more negative about it all here lately. So last night I had to do something I was taught a long time ago. I simply thanked God for all the good things that have happened and all of the bad things that haven't. Like I still feel good most days, am still very functional, I have not had to deal with any infections or major side effects, I still have the same small amount of hair I started with, the same big belly, I don't have to take too many medications, and I am sleeping again. I still have the best family and friends in the world without question. So, today I will try and stay focused on the good and not the bad. One good thing that did happen this week was I convinced them to take the "pick-line" out of my left arm that has been there since October. As of Saturday I will be able to once again take a normal shower, without having to wrap my arm in plastic wrap! It's the small things.

That's what we know for now. I do know that I have a follow up appointment with the surgeon on Monday April 4th. 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..........

Raised Bed Garden

Last Saturday morning Rebecca and I awoke and found ourselves in a very strange place. It occured to us both that we actually had two days with no kids and no plans. Two whole days with nothing, nada, zip, zero, nothing to do. I should have known better. I knew she would have something up her sleeve, and sure enough it wasn't long before she was informing me of a new project.

She has always, even though we haven't done much of it, enjoyed planting and gardening. The problem is we live in a rent house and are limited to what we can do. So her resolution was something called a raised bed garden. We then began look at different examples on the Internet and finally found one she liked. It stands about waist high and is around 8"-12" deep and could be as big or small as you want to make it. After some discussion I was sold and we were off to Lowe's. (Of course it was an easy sell for me because it involved lumber and power tools!) After spending about an hour buying the material, we were home and off to work in the garage on our latest project. On Sunday evening we were able to stand back and look proudly at the finished project waiting to nurture and grow what I am sure will be the best tasting vegetables in the world!

What's my point you ask? Well, it is something even I wasn't expecting. I think I have a good relationship with my wife. We have our moments like all couples do, but for the most part we have a great relationship. What I found was this was one of the best things we have done for our marriage in a long time. First of all, it got us out of the house and away from the television. Even with me not working, it has become so easy for us to sit in front of the TV during our down time and simply zone out. Not communicating or spending any real quality time together. The second thing was it gave us a very attainable common goal, and the satisfaction of accomplishing that goal, and seeing the end result. I think it can help us with our long term goals as well. Seeing what we are capable of when we work together, and seeing how well we work together. We never argued or disagreed the whole time, not once. It gave me the satisfaction of teaching my wife to use power tools, and the joy of watching her discover that she liked working with wood, using tools, and building something. (And come to find out, she is very good at it!) And for someone like me, a male with a very Type A personality, it was good to stand back and not completely take over. And it was good for me to teach someone else something while not trying to control them the whole time. Part of learning to let go and let someone else. It gave us two days of exercising our bodies and minds while enjoying each others company. It gave us the chance to talk like we hadn't in a while. And we did.

So I guess my point is this. I will now look for other common tasks we can accomplish together. Not only did we build something that we can physically touch, and something that we can use on a daily basis, but we built something in our marriage that we can continue to build on. We made memories those two days in our garage, with no one else around. We strengthened our bond, our communication, and our sense of teamwork. And the best part is I got two days of being with my wife. Priceless.

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

Facing My Realities

I was asked by someone this week to share my thoughts on living and dying. The request was based on the question, if you were told you had a year to live, what would you do? On the surface it seems a simple question. And I think that many times when posed with that question most of us have a simple, almost rehearsed answer. Most of us have a bucket list. Travel, spending more time with family, quitting our jobs, are some of the things I have heard and even said myself. The reality of an honest answer can be quite different. I have learned that over the last year in facing my own mortality. As always, I try to be honest here and this will be no exception.



For me it is a difficult question to answer. I have thought a lot about it since asked, and I don't know that I will share all of how I feel about it at this point. Let me first of all say this, the doctor's have not given me a set amount of time. I have never been told, you have six months, a year, or two years to live. So to honestly answer how I would feel if I had been told I have a year left simply isn't possible. We know the statistics for someone in my position. And I have definitely been put in a position to ponder my own mortality. I can tell you a few of the reasons I don't have a "bucket list". The first is money. I hear people say when answering that question that they would quit their jobs and travel. I giggle when I hear that because that tells me they have money stashed away somewhere. I don't, so travel will not be an option! One of the other things I hear is, I would quit my job. So far, the cancer has taken care of that for me! Do I have a few things I would like to do before I die? Of course I do. Maybe I will get to do them, maybe not. What I will focus more on as the weather continues to warm is playing as much golf as possible and doing as much fishing as possible. Besides my family, those are the things I most enjoy after all.

I think we all have regrets in life. I know that there are certain things that we would all change if we could go back. But we can't. As I have looked back on my life the things that I regret the most are the times I hurt those closest to me. And as I look to my life in the future my goal is to live in a way that causes no more pain to those people. A person once told me the best way to make amends to those we have hurt it to never repeat those mistakes and never hurt them again. At this point in my life one of my biggest regrets isn't what I did, it's what I am not able to do. My wife and I are fairly simple people. We don't care about possessions or toys. Our biggest goal in life is to buy a place with land and a house, in the country, where we could raise the kids and some animals. We had begun working toward that last summer. Now, with me being sick and not working it won't happen anytime soon. Not being able to help see one of your wife's dreams come true is hard. Along the same lines I could see how it would be easier for someone in my position to go out and do or buy a few things on that bucket list. Rebecca and I both would love to have a new truck. But one thing I realized early on is that I still must be smart about how we spend money. I still have a family to take care of and me being irresponsible would not be fair to them. Another reason I don't have a bucket list.

In the final analysis what I think about life and death, and looking at it from a perspective of having a short amount of time left, is really pretty simple. I am a Christian and know where I am going. I don't spend a lot of time wondering about heaven. I know that my pea brain can never comprehend it. When I get there, I will know. For my life on earth and how ever much time I have left, I simply hope for peace and happiness. Really what we all want I think. I am not an intellectual. I am a simple person with simple hopes and dreams. I hope for as much time as possible to spend with my family. When I do think about passing on what grieves me the most is losing them. Period. It makes my heart hurt in ways I cannot describe. What gives me the most joy when I think about living is my family. Period. I think for me it is more an issue of balance. I am learning to enjoy each day more than I ever have, but still do the things that are required of me each day. Paying bills, cleaning house, doing laundry, the world doesn't stop just because I am sick. I try my best to instill in our kids what I have learned and believe, and do the best to help them become their best. I try harder to be the best husband I can be, and show my wife how much I love her. I try to face this challenge of cancer, no matter it's results, with strength, dignity, humor, and resolve. Hoping that it will teach our children how to face life. I try each day, sometimes without doing them well, to be more compassionate, understanding, caring and tolerant. I think more these days about leaving this place better than I found it.

Those are but a few of my thoughts. One thing I am finding is that even the way I think and feel about life and death is, in some ways, an ever changing process. I guess one thing that doesn't change is I try to focus most of my energy on getting well. We have a long ways to go with no guarantee's. But no matter what I will never give up fighting, not only to stay alive, but to enjoy whatever time I have left.

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

Feb. Update

Well I am back home this weekend after being in Houston all last week. My parents and I left on Tuesday to go south and beat the winter storm. On Thursday I had all my tests, CT's, MRI, blood work etc. On Friday morning they did a Fine Needle Aspiration (better know as a biopsy) of the tumor under my arm. It wasn't the best trip in the world for several reasons but at least it is over for now.

One of the frustrating things that happened this trip was my doctor's appointment got scheduled for Thursday morning at 9:30, before I had my CT scan or my MRI done. It is kind of difficult for the doctor to make a diagnosis, or give a progress report on how I am doing without seeing any scans. After several phones calls to the nurse, it was decided by the doctor that I would still see him Thursday morning. It was a waste of time. (I did ask what happened and was told whoever scheduled the two day's made a mistake.) Later that day I went to another clinic there at MD Anderson to have my pick line cleaned and the bandage changed. (The pick line is the tube in my left arm that is used to inject the chemo. into me.) It has six stitches holding to my bicep. One of the stitches had pulled out so the nurse had to redo it. So she decided to redo all three on that side. She forgot to deaden the bottom one before she started stitching it. It wasn't that it hurt that bad, it was just another one of those frustrating things. And the biopsy, all I will say is they took a needle that looks like a drinking straw and stuck it in my three different times. Now I have three holes in my side. The biopsy is will be tested to see if my cancer has the mutation I spoke about a few blogs ago. It should take three to four weeks to get the results back.

With the doctor's appointment mistake, they told me they would call me on Friday morning and let me know the results. It's a little too confusing and time consuming to go into too much depth about all the dynamics, but when we met with the doctor and physician's assistant on Thursday we were left with the impression that they wouldn't do surgery. As I told my parent's and wife I was confused because surgery had been discussed at our last appointment. The physician's assistant called Friday morning and gave us the results. The tumor under my arm is shrinking and some of the cancer in it is dying. The ones in my lungs and abdomen area are not showing much shrinkage. Some are shrinking, it is just not significant. The good news is there is no new growths and it hasn't spread anywhere new. And the ones that are there aren't growing. So again, not bad news, just not the news we were hoping for. My cancer is being stubborn. One of the things I did ask the doctor was how much more chemo. can my body take? For whatever reason I am handling the chemo. very well. Most people only get six rounds before the side effects become too much. (To look at me, you would never know I was sick.) He said I should be able to handle at least two more rounds which would put me at eight rounds. So at the end of the phone call, the physician's assistant said the doctor was recommending two more rounds of chemo. About thirty minutes later I got another phone call from the physician's assistant. She told me that the doctor, after spending more time looking at my scans and after more discussion, had changed his mind and was now recommending surgery to remove the tumor under my arm. So the decision was made, the next step will be surgery in Houston. We don't know when it will be. They are supposed to schedule it and call me this week to let me know. We are hoping that it will be before the end of the month. Once I am completely healed after the surgery I will resume some sort of chemo. I have to be totally healed before I can do more chemo. so we don't have a set time frame.

Believe it or not, that is the short version. It was a stressful few days for us, but we continue on. Hopefully the biopsy results will show the mutation and I will be able to switch to a different type of chemo. and see if it will be more effective in killing my cancer. As soon as we have a schedule for the surgery I will update everyone.

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

Voices.........

I am sitting in the hotel in Houston as I begin writing this. I am watching the morning news shows and laughing as I watch them talk about the horrible cold weather. It's 26 degrees. Sorry that's not that cold. Some schools are even starting late due to the cold. They are asking people to conserve power here due to the cold. Last week, because of cold weather, they had rolling blackouts here! But I was reminded that a huge part of life is all about perspective and what we are used to. They simply don't have to deal with winter like we do in Oklahoma, and we don't have to deal with winter like they do in Kansas or Nebraska. It is all relative.

I am going to get on my equally sided rectangular object, or soap box. I will be the first to say the technology has, and continues, to transform our lives. Everything continues to change and evolve. Microwaves, TV's, cell phones, computers, cars and on and on. I even saw an advertisement for a car the other day that will now give audible facebook updates! (I think that is going a little too far.) If it weren't for modern technology I may not be doing as well as I am. And I will admit that I am somewhat of a gadget junkie. I like to have the latest and greatest, even though I am not good at using them. As a matter of fact, I really don't even know how to use half of what my computers and phone are capable of. But what I have realized is that one of the downfalls of modern technology is we are losing human interaction. Face to face, voice to voice interaction. Between text messages, email, facebook updates, and instant messaging, many of us choose those as the means by which we communicate. And don't get me wrong, I am guilty as well. Those means of communicating have their place and time. Sometimes they are easier and more convenient. I am one who uses a blue tooth headset because I don't like having to hold the phone up to the side of my head. I ask myself the question, have we gotten to lazy? Do we rely on convenience too much?

For me the answer is yes. I have realized over the last several months that I have come to rely too heavily on these tools. I think it is a sad editorial of myself that I can infer emotions in text messages with the ones I am closest to. I have come to miss some of that interaction with others. What I am learning is that not only do I miss it, sometimes I need it. (Not to mention I am getting really tired of texting!) It goes back to what I wrote about not long ago. We are not meant to be alone. Relationships with others is one of the most important things in my life. I need to take more time to make phone calls and actually speak with others. I need to take more time to have a meal, or share a cup of coffee with those I care about. And sometimes, and there really is no way around it for me, I need to spend time with them, not send them emails. I need to hear their voice, not send them text messages. Sometimes hearing their voice can fix a day gone bad, calm a fear that is getting out of control, give a sense of peace that I cannot find anywhere else, and put a smile on my face. Sometimes I just need to hear a voice.

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