Tuesday, September 30, 2014

A Collection of Randomness

It has been a little over four weeks now since I started in the X-396 trial. I had a reaction to the medicine and had a bad rash that covered my whole face and was very painful. Due to the reaction, I was taken off of the drug for 10 days to clear up the rash. The last two weeks have been very trying for me as I just have not been able to make any sense of it all. I have wanted to write a new blog but just have not been able to put my thoughts together. So, today I offer you my thoughts on some seemingly random events over the past few weeks.

It had been another long day at MDA. There had been a mixup with my schedule and, once again, I was going to be delayed in taking the trial drug. I am not allowed to eat for two hours before taking the medicine. I had not eaten since 8:30 that morning, and the longer things stretched on, the hungrier I got and the more my frustration built. Finally around 2:00 that afternoon I was allowed to take the drug and leave the clinic. I had had enough for one day and practically ran back to the truck. I wanted out of MDA and out of Houston as quick as I could. Of course, I am also not allowed to eat for two hours after taking the medicine. As we headed north on I-45 in stop-and-go traffic, the minutes just ticked by. We hit Huntsville just as it was time to eat. I needed some food, and the snacks in the truck just would not do. I decided that I wanted pancakes, and we found the local IHOP. We were seated at a booth, and our waiter brought us some water and took our order. As I sat in that booth, I could feel the last bit of energy draining from my body. I put my head in the palms of my hands and closed my eyes for a few minutes. My momentary rest was interrupted by our waiter asking if I would like some orange juice for a little pick-me-up--at no charge. He had noticed the bandage on my arm and thought I had just given blood. I told him, "No thanks on the orange juice, but if you could find an orange, I would really appreciate it." I thought that I had just asked the impossible and told DeLayne, "No way he brings back an orange." Just a few minutes later, here he came with a bowl of canned oranges. He actually apologized for them being canned and said, "We just got these in for some reason." DeLayne and I actually started to tear up a little. It wasn't about the oranges. It was that someone saw we weren't having a good day and took a few moments to care. Sometimes you may see someone in need and think that what you have to offer won't make a difference and move on. That small gesture may not mean much to you, but it may just be the high point of that person's day.

When my face was engulfed with the rash and I seemed to be in never-ending pain, the thought occurred to me that this might be what Hell is like. Constant burning torment and no relief; add eternal separation from God and I think you would be there. Thankful that I know who my Savior is.

One Sunday morning I was watching a very well-known minister talking about encountering troubles in our lives. He was making the point that as Christians, nothing comes to us that has not passed through God's hands. I believe that to be true, as well. However, there are times that I wish God would hold His hands a little tighter together.

While I was dealing with the rash, I had a lot of sleepless nights. One of those nights I turned on the TV and started flipping channels. I happened across a minister that is very popular right now. I can only say that most of his teaching is based on the Name-it-claim-it theology. As I listened to him, I began to feel sympathy for the people in his congregation who are fighting long-term health issues like I am. If I were to believe what he is teaching, the reason I have not been healed from cancer is because I do not have enough faith. Hogwash! I would suggest this minister read Psalm 69:13-14. "But as for me, my prayer is to You, O Lord, at an acceptable time; O God in the greatness of Your lovingkindness, answer me with Your saving truth. Deliver me from the mire and do not let me sink; May I be delivered from my foes and from the deep waters." (NASB) God does not operate on man's clock. At an acceptable time to God, He will answer our prayers out of His lovingkindness. Sometimes He says, "Yes," sometimes, "No," and sometimes, "Wait." Faith is knowing that God will answer us out of His will.

I was reading a commentary on hope the other day. Hope has gotten a bad wrap lately. There are a lot of people who have placed their hope in a man. That man has now disappointed them in one way or another and they have lost their hope. The last few weeks, there have been days that hope is what has gotten me through the day. There have been days that hope is the only rope I have to hold on to. That rope has been frayed, and at times it feels like it is down to the last thread. The thing that has kept me going is knowing that the other end of that rope is held by the nail-pierced hand of Jesus.

Wednesday, August 27, 2014

Unknown Lands

The past 20 months have been pretty uneventful health wise. There have been no trips to the ER, no hospital stays, and once we figured out that my high fevers were caused by a reaction to the CT contrast, we have just been sailing along. The medical team in Fayetteville had become special friends to us. We had become comfortable with life on the smooth path. And then I began to cough.

Four weeks ago that familiar dry cough began to reappear. Instinctively, I knew that my medicine had started to fail. For the next three weeks I would lay in bed at night and pray that this was not happening again. I would lie there and talk to God telling Him that having to do this a third time could be more than I was prepared for and that if it was His will, to just not let it be so.

The CT scan conducted just a week ago confirmed that there is a new area of concern in my right lung. The time has come to get back in the fight. It is time to move from the land we have become comfortable with. Unlike the last two times where the treatment path was clearly laid out in front of us this, this time we are staring down a path to the unknown. There are no drugs with solid test results for me to change to. Trying to decide on a treatment based on the results of one or two patients is a scary position to be in, but that is what we will have to do.

The Sunday morning we were packing to for our last trip Fayetteville, the words God spoke to Abram popped into my head. God told Abram to pack all of his belongings and move to a "land that I will show you." Those words have been stuck in my head as we have been evaluating the different drug trials that are available. We have been seeking God's direction to find the best plan for me, and while we have narrowed down the choices to two or three drugs, there still does not appear to be a clear path. We are heading into unknown lands, but the one thing we do know is that God will show us the land that we are to go to, and He will be waiting for us when we arrive.

Sunday, July 6, 2014

Thirty Years

Thirty years ago I stood at the front of a church and looked down the center aisle to see the love of my life slowly walking toward me. We had stuck with tradition, and this was the first time I had seen her that day and the first time I had seen her in her wedding gown. On that day we promised that we would love, honor, and cherish each other for richer, for poorer, in sickness, and in health. In the last thirty years, we have pretty well covered those bases.

We had only been married two months when DeLayne was laid off from her job. There we were with my tuition bills to pay and half our income was gone. That did not last long, because DeLayne is very talented as a Certified Professional Secretary, and she was able to find another job quickly. At the time, I still had at least one more semester left in college and maybe more, depending on how many hours I would be able to take my last semester. Because of the money in our savings, I was able to quit my job and take all of my remaining classes in that last semester. I had an engineering job offer locked down before graduation, and we were on our way.

Just one month after graduation, we packed everything up and moved to Midland, Texas, for my first real job. We joke now about how that is one of the decisions that made our marriage stronger. Moving twelve hours from our families meant we had only ourselves to depend on. There was not going to be any "going home to our parents." Since we left all of our friends and family behind, it made us two introverts meet new people and make new friends. The friends that we made during those years are ones we still stay in touch with. Five years and one baby later, we packed up and moved again.

We made our second home in Sherman, Texas. Just seven months after moving, baby number two arrived. DeLayne delivered Shane just like she had Chad--no pain killers. It was at the hospital that I heard the best description ever of DeLayne. I came out of her room and bumped into the doctor who had just delivered Shane. As we walked to the nursery, he looked at me and said, "That DeLayne is as tough as an old worn boot." The years we spent in Sherman were good years with me being promoted, earning an MBA, and with that extra security, we decided that the time was right for DeLayne to leave her job and start her own secretarial business based out of our home. Having her own business allowed DeLayne to keep her own schedule and be there when the boys got out of school. My job was going well, and I was soon offered a job in Dallas. So, we packed everything up and moved to McKinney.

My new job required that I travel to Asia twice a year. DeLayne was busy starting her business in McKinney but was still able to take up the slack created when one parent was missing. A few years after moving, DeLayne began having a minor medical problem. After being sent from one specialist to another with no diagnosis, one doctor ordered a CT scan, and the report came back that there were spots in her liver. We were finally referred to a liver specialist at Baylor Dallas. I remember sitting in the waiting room looking at people who were obviously ill and wondering, "Is this what our future looks like? And if it was, how was I going to be able to handle it?" When we saw the doctor, he just looked at DeLayne and said, "You have cysts in your liver; no big deal, lots of people have them. Go enjoy your life." Relieved, we left the doctor's office, but little did we know, we had just seen a glimpse of our future.

From there life just went on. Both boys were busy in school and sports. DeLayne's business was going well, and my work and coaching the boys kept me busy. Before we knew it, Chad and Shane had graduated high school and were in college. Just like that, we had been married twenty-five years. Our lives were going just the way they were supposed to. We were looking forward to spending time together and to eventually retiring. And then, I started to cough. We started spending more time together, but not the way we had planned.

The first twenty-five years were preparation for what was to come. I knew life had just taken a drastic turn, and I was not sure how I was going to deal with it. Actually, I ended up with the easier part. DeLayne deserves better than the deal she has gotten. Being the caregiver to a cancer patient is much harder than being the cancer patient. All I have to do is lay there and be sick. DeLayne deals with keeping the schedule straight, keeping up with the never-ending insurance paperwork and my medical records, and then she has to watch this mess. One thing most people don't know is that it is very easy for a cancer patient to become overwhelmed. There are days when I just want to shut down. Situations that would have not been a big deal before I got sick now can just frustrate the bajeebers out of me. I can usually do a good job keeping it together around other people, but DeLayne has to live with me and see the ugly side of what cancer has done to me. She sees me when I have had enough and the lid blows off in frustration. And she'll just give me a hug. I am so thankful that she is keeping the vow that she made to me thirty years ago and that she is as tough as an old worn boot.

Monday, June 16, 2014

Not Letting Go

Four years ago is when my symptoms first began to appear. I did not know or understand much about the journey that I was beginning to take--where it would go or how long it would last. But as I sit here now, I am amazed at how my memories of events from years ago have been used to teach me lessons along this road.

These past few weeks a memory has kept popping into my head. The memory is from the days that Chad had his learner's permit and we were teaching him how to drive. At the time, I was driving the truck that was destined to be his when he turned 16. In fact, he even helped pick out the truck when we bought it. One Saturday morning, I awoke early and looked out the window to see the grass and streets covered with snow. I thought that this would be a great opportunity to teach Chad to drive on icy streets. In North Texas, snow does not last long, so I went out and cleaned off the truck and then went up to Chad's room and rousted him out of bed with, "Get up, we're going driving." At the time, there was a new neighborhood going in across the street from our neighborhood. All of the streets were in, but no houses were built yet. I drove across to that neighborhood, and we switched places. I had Chad drive around the streets, and every now and then I would tell him to give it a little extra gas around the corner so that the back end would slide out and he would have to correct the slide. Once I felt like he had a good grasp of how to drive in these conditions, I had him drive down to the end of the longest street in the neighborhood and turn around and get centered in the middle of the street. I then said, "I want you to speed up to 30 to 35 mph and then slam on the brakes." Chad looked at me with a look of concern. What I had just told him to do was a complete contradiction to what I had been telling him for almost 30 minutes. Not to mention, it sounded like I wanted him to turn his future truck into a sled. I repeated my instructions, "Speed up to 30 to 35 mph and slam on the brakes," but this time I added, "No matter what you feel, do not let go." I knew what was about to happen, but Chad had not experienced anti-lock brakes before. He did as I instructed, and things went just as I knew they would. Driving lesson complete, we headed for home.

Now, what does that story have to do with cancer? Of late, there have been several occasions when I start to lose my focus. There just does not seem to be anything positive, and all I see is impending chaos, and I feel like things are sliding out of control. At those times, I can hear God say, "I have brought you to this place and put you on this journey for a reason. All you need to do is keep going and no matter what you feel, do not let go of Me."

Sunday, April 6, 2014

Learning to Fly

Last summer I was looking out our kitchen window and had the chance to watch what looked liked a momma bird teaching her baby bird to fly. They were just perched on the fence when Momma bird would take off, fly out and back landing on the fence about five feet from the baby. The baby bird would then just look at the momma bird and hop down the fence line and stop next to Momma. Momma bird would just look at the baby bird and then repeat the process, and the baby bird would just hop down the fence and stop next to Momma. Momma bird must have done this at least three times when she took off and flew to a tree about five feet away. The baby bird just sat on the fence and chirped. I found myself trying to root on the baby bird: "Come on, you can do it--fly." The baby finally stretched his wings and flapped a couple of times and then flew over to the momma. That little five-foot flight had just opened a new world to that baby bird. I'm sure it was not much longer until the baby bird was out of the nest.

As I think about that scene playing out, I realize it is not much different than us as parents. From the time our children are born, we take steps to prepare them to leave our nest and fly out into the world on their own. We often use terms like, "leave the nest" or "they are empty nesters" to describe the process. There are times that we doubt ourselves and wonder if they are ever going to get it. Why are they content to just hop when they have the ability to fly? Then one day, they spread those wings and are gone, and you believe that they are set on a trajectory for their life, when they make a decision that you just did not see coming.

That is what we have experienced with Shane the past few weeks. For several years now, we thought that Shane would follow his brother into the pro bike racing circuit. He had already taken the first step by signing a contract with a pro team. However, after a few months, Shane decided that pro racing was not for him, at this point in his life. I am not going to tell the story here. You can read Shane's very well-written blog on how he arrived at his decision at his blog Shane Meets World.

I will admit being a little surprised at his decision, but since being diagnosed with cancer, I have told the boys to find something they really enjoy doing so that they look forward to going to work. As I read Shane's blog, I was impressed at how he sought wise counsel from his friends and family. He also prayed and asked God for His guidance. He is spreading those wings on his own. As I read through his blog, I realized that DeLayne and I invested 12 years in Shane the baseball player, 5 years in Shane the cyclist, but we have invested 23 years in Shane the man. Shane and I spent a lot of time together during those years, and I was given an opportunity not afforded to many fathers; I was able to watch my son grow from a boy into a young man.

Just after the first of the year, Shane had gone out for a bike ride. When he got home, he talked me into for going out for a short ride with him. As we rode, I noticed that Shane would position himself to block me from the wind, and I began to realize that we had crossed a threshold into a new chapter in life: The protector had become the protected.

We are very proud of Shane and are excited to see where he goes from here.

Shane has always enjoyed working outside and with his hands. He also is very smart and has a Degree from Texas A&M in Turfgrass Management. We were not at all surprised when he called and told us he had been hired by the Garden of the Gods Club as a greenskeeper. That looks like a pretty nice office view and a good place to fly.

Sunday, March 30, 2014

The Best

Have you ever had a period in you life where it seemed like everything you prayed about seemed to be getting worse? Well, that is where I have been for several weeks. I was physically exhausted and mentally frustrated from trying to keep all the balls in the air. The question formed in my mind of just how long could I keep this all up. I was just praying that somewhere, somehow, God would give me a break from something. Little did I know what I was asking for.

I had just been to Fayetteville on Monday and left thinking that medically everything was going just fine. Then on Thursday afternoon, I received an unexpected call from the clinical trial nurse. They had received the lab results from my blood test, and my creatinine level had reached an unacceptable level; I was to stop taking the medicine immediately and in five days be retested. Based on those results, we will decide how to proceed with treatment. God, this is not the break I was looking for.

A few months ago, I was looking for any new information on LDK378 and came across a blog by a young mother who had just started LDK378. Earlier in the week, I decided that I would check her blog to see how she was doing and found that she was still struggling with the side-effects of the drug. Thinking I would help her out, I sent an e-mail describing the ways I had found most effective in getting through the day. She responded with a thank you e-mail and also mentioned she was having trouble with headaches. I have, as well, and I let her know. Since she is the only other LDK378 patient I have talked to and some of our other side-effects were similar, once I found out about my creatinine level, I thought I would see if she had seen a change in her levels. She responded to my question that, thankfully, she has not, and then gave me some unexpected advice: Enjoy your time off of the medicine and use it as a time to rest and physically recover. She was right.

After reading her advice, I realized that for the first time in four years, I am not taking medicine to fight cancer or the side-effects of those drugs, no pain meds, no antibiotics for pneumonia, no medication to help with nausea or intestinal issues, and no meds for blood clots. I also don't have cancer. I have been able to go through the days not ruled by the medicine and watching the clock to see when I could eat. I have been able to sleep in later this weekend instead of waking up early to keep on my medication schedule. We have been able to go out and enjoy a movie and dinner without me taking pills in my pocket. It is amazing that in just four short years, I have forgotten what life without cancer is like.

While enjoying this break, I have also been reminded that when I began taking this medicine, we knew that it was probably not something I would be able to take long term; that like the Crizotinib, there would come a time that it would begin to fail or cause toxicity problems. I also knew that, just like the Crizotinib, God would not allow it to fail until a better medicine was available. Have we now reached that point, or is this just a little bump in the road? I don't know, but I do know that God wants the best for me. If His best is for me to continue this medicine, even on a reduced dose, then that will happen. If His best is for me not to continue on this medicine, then we will continue on this journey knowing His best lies on whatever path He directs us. I also know that when the time comes that His best is no longer available on this earth that then, and only then, my journey will end, and I will go home to receive His very best.

Tuesday, December 3, 2013

Tough As Leather

When I was in middle school, I was able to take my first shop class. One of the things we were taught was how to tool leather. We learned how to take leather and put designs in it and learned how to stitch them together. I really enjoyed making things and continued to do so through high school and even into college. I made wallets and even some belts for family and friends. I was good enough at it that a local western store offered me an opportunity to sell belts in their store, but I knew how long it took to make a good one and did not see where I could make enough to make any money at it. Besides, when you start selling your hobby, it becomes work.

I put the tools away after college, but they have been stored in a closet in every house we have lived in. When Shane was in middle school, he wanted to know how to tool leather. I had some scrap pieces of leather stored with the tools, and we broke them out. I started teaching him how to cut and stamp the leather. Also stored with the tools was a wallet kit, and I started tooling it but did not finish it up, and we eventually put it all back in the closet.

I decided that I would take all of Thanksgiving week off as vacation this year, and then I saw the weather forecast. We were expecting cold, damp and rainy weather, and I had planned to do things outside. What was I going to do? The unfinished wallet came to mind, and I decided to get it and my tools out once again. When I saw the leather back of the wallet, I could tell that it was dried out. It had been close to 10 years since I started that wallet, and it would need to be prepared properly before I would be able to tool it. In leather work, preparing a piece of leather for working is called casing. The way I learned to do it was by using a sponge to apply water to the leather to get it damp and then sealing in a plastic bag. This lets the pores of the leather open up, and the leather will get soft. Without casing, the tools would not leave their imprints in the leather, and it would be difficult to work with. Once the leather was cased, I was able to finish cutting and stamping the leather. I am not as good at it as I used to be, but the wallet is almost finished and ready for stitching.

As Christians, I think that sometimes we believe we are as tough as that dry piece of leather. God can't work with us like that, and we won't accept his imprint on our lives. We need to be cased before he can really work with us. That's where our trials come in. We tend to think that God has forsaken us, but often times, hard times are not the absence of God but His presence in our life. It is during these times that God is preparing us to leave His imprint on our lives.