We're home!

We are home from the beach. We had a wonderful and relaxing time. We weren't able to get into the Gulf water at all due to red flag conditions. However, we spent countless hours down on the beach just soaking up the sights and sounds that are the beach.


No one came home sunburned. That is a major plus for us. A sunburn for Keith and Nick could be pretty bad. Several of their medications make them ultra-sensitive to the sun. We love the beach, but respect the sun. We go armed with major sunscreen, big beach umbrella, t-shirts, and hats.

Keith had CT scans today to check the progress of the cancer. We'll find out the results on Monday morning. We have to wait the weekend, but that doesn't really bother us. It is only two days.

The worst part is the wondering and being plagued by those "what-ifs". It seems like there are a million different thoughts and fears circling through my mind. One of the hardest things for me to deal with right now is the fear that we will be told that Keith will have to stop treatment completely. I struggle with that a lot. I'm not ready to move into the end phase of cancer. I don't guess that anyone is ever ready.

I have had to start and stop this post a few times during the last couple of days. It has been crazy trying to get back into a routine. Then the routine got disrupted again tonight. Kacie is sick with what appears to be a tummy bug. I know that doesn't seem like much, but it just sent my stress level way up. We deal with so much stress on a regular basis that even regular kinds of sick seem hard to handle sometimes. I hope she is well by Monday. I don't know what I'll do if she isn't. I really need to be with Keith on Monday.

I feel like all I'll do if I continue writing is whine. I don't like whining, so I guess this is it for tonight. I am hoping I'll be able to fill in more of the details of our beach trip soon. Thank you for the prayers.

Time

Time has a way of flying by, and I can't seem to catch up.

I am feeling better. Thank you for your thoughts and prayers. It took a few days for me to settle down and let God handle everything. Nick has been fine so far.

Keith had his blood counts checked yesterday morning (Monday, 5/19). His counts are rebounding nicely and he did not need any shots to boost him up before we leave on vacation. That was wonderful news to hear. Keith's blood counts have been so abused by the four years of chemo. It doesn't take much to drag him down.

My thoughts are all over the place tonight. We are in the final stages of the vacation packing. I am so looking forward to this trip. We are going to the beach.

The beach is probably my most favorite place in the world. I feel like I can breathe when I'm there. It is also a worshipful experience for me. My favorite thing to do when we are there is to go down to the beach at night. I'll just sit and let the night envelope me. All I hear is the ocean. All I see are the stars. I feel so close to God at that moment. It is almost like my soul takes a big breath of fresh air. I'm excited just in anticipation of it.

I am trying not to worry about what we will come home to. Keith will have CT scans two days after we come home. We will get the results a couple of days later. I am afraid of what we will hear. I know that we are close to hearing that there will be no more treatment, unless God has chosen to intervene with healing. Some days, I'm strong and I know we'll handle it. Other days, I'm weak and want to bury my head. It's hard.

A couple of days after we find out about Keith, Nick will have a bunch of scans to see how his cancer is progressing. So, I guess we'll find out about both of their diagnoses in the same week. Two years ago, Keith was diagnosed with cancer for the third time and Nick was diagnosed with PTLD/lymphoma all in the same week. That was hard too. I don't know how we managed, except that God carried us. I know He will again. I'm just not ready to face it.

Please pray for travel mercies, everyone to stay well, and for rest.

Anxious and afraid

For all of my talk about how I try to overcome anxiety, I am not doing a very good job of it tonight. I have become almost paranoid concerning Nick. There are many symptoms associated with the PTLD/lymphoma that he can have ( low grade fever, back pain, nausea, vomiting, stomach pain, tiredness, etc.). This is not the first time we have been told to watch Nick for symptoms. I'm sure it won't be the last.

A few days ago, Nick felt hot to my touch. I checked his temperature and he registered as 99.5. I know that doesn't sound like much, but for Nick that can be considered a fever. The medication he takes not only makes his immune system weak, but it also makes the way his immune system responds to things different. If Nick ever runs a high fever, the probability that he has something serious is very high. So, if he registers a low grade fever, then he is likely sick and we have to take action.

I have to say that my stomach did a flip. Nick is already on antibiotics for a borderline sinus infection. Running a low grade fever points to the cancer becoming active again. That's what happened two summers ago. Nick was fine, and then started running low grade fevers in the evenings. At that time, we knew Nick had PTLD/lymphoma and were watching him for symptoms. The fevers were the main symptoms he had.

It didn't occur to me until a little while later the other day that Nick had been outside riding his bike. Once I thought about him just being hot, I settled down. Nick took a shower and I made sure it wasn't one of the hot kind that he loves. I took his temp after he got out and it had returned to normal. I exhaled. I also checked it again a couple of times before Nick went to bed. This is also procedure for us to make sure we get an accurate read. When Nick was first transplanted, we had to check his temp several times day in order to get a daily average. Anyway, every time I checked, Nick's temp was normal. One would think I would let it go!

Nope! Not me! I have been obsessing about this temp thing for three days now. I am constantly checking his head or sticking the thermometer in his mouth. Nick finally asked me why I keep checking. I told him I was paranoid. Now, he'll say "Mom, are you feeling paranoid again?"

I wish I could say that I am full of faith and I am trusting the Lord with this, but sadly...I can't seem to let this go. I found myself looking at Nick this afternoon and thinking that maybe he looks pale. That was when I realized that I do indeed have a problem. The peace that I long for, I can't find. Fear and anxiety have replaced it. I can't seem to let go of it long enough for the Lord to fill me with His Peace.

I'm asking for prayer for me tonight and through the next several days. Prayer that I will be able to let go of this and allow God to work. We are supposed to go on vacation next week. It has been a long time since we've taken one. I'm afraid that something will happen and we won't be able to take our trip. We could all use some time off. Pray for that too. Also pray that everyone stays well.

Thank you for lifting me up in my time of weakness.

Happy Mother's Day

I hope everyone was able to have a wonderful day today. I know that there are many who are experiencing sadness on this day. My prayer is that God will comfort and bring peace that only He can provide.

Today brings back a memory from twelve years ago. It was my second Mother's Day, and I was terrified that it might be my last. Nick had been diagnosed about 6 months earlier with liver cancer at 15 months old. We were told there wasn't a cure, but if the tumors would shrink surgery would help.

A month or so before Mother's Day, we were told that Nick couldn't have that surgery. His chances of surviving the surgery were slim to none. We were devastated, and didn't know what to do or say. On the evening of the day we were told this, Keith's mom (Kay) was with me and Nick at the hospital. Nick had been admitted for his scheduled three-five days of chemo. Kay and I sat there, while Nick was sleeping, attempting to eat our supper. We both cried so hard we couldn't eat. Nick's nurse came in on rounds and began talking with us about why we were so upset.

Looking back, I can see God's hand at work here. This nurse was the first person to ever mention a transplant to us. We thought that a transplant was impossible. By the time Mother's Day rolled around, Nick's oncologist had been searching high and low for some kind of option (hope) to give us. Eventually he found it, since Nick had a liver transplant.

I can remember telling Keith I was so scared that if Nick died, it meant I wouldn't be a mom anymore. Those were the kinds of thoughts that plagued me on that Mother's Day 12 years ago. I don't remember how I managed to get through it, but I did. I know that God was with me every step of the way. Keith was very understanding, even though I'm sure his heart was breaking as well.

Today, my Mother's Day was spent receiving flowers, cards, and sweet treats from Nick, Kacie, and Keith. We went to church, out to lunch , and bowling. I was asked what I wanted to do for Mother's Day, and I wanted to do something "normal". Bowling was the first thing that came to mind. I had a wonderful day. What a difference from twelve years ago!

I've now had the opportunity to celebrate Mother's Day fourteen times. I just have to pause and thank God for each of these, even the not so good ones. I remind myself that once upon a time, I was afraid I wouldn't have any more Mother's Days at all.

Happy Mother's Day!

Waiting...

A couple of weeks ago, during Wednesday night prayer meeting, I was struck with the realization that many of the people on our prayer list were waiting. Some were waiting for surgery. Others were waiting for test results. Still others were waiting for God's healing hand. I was overwhelmed with the amount of waiting that some of us have to endure.

Sometimes waiting is worse than anything. I am not a patient person. Patience does not come easily for me, but I have learned the importance of being patient. I think of waiting, patience, and anxiety as siblings. In my world, they all go hand in hand. For example: We are waiting on some test results. The results take time, and time means patience and anxiety. We wait in the doctor's office to receive what will likely be sad news. That leads into more anxiety, and we have to wait patiently until it is our turn with the doctor. The whole thing is made worse, because the entire situation is out of our control. Then we have a need for more waiting, more anxiety, and more patience. It is a nasty, vicious circle.

Sometimes I think about what I have learned about patience over the last several years. Probably one of the most important things I have learned is that God wants us to turn over everything to Him. A friend of mine sent me a wonderful email that had a link to a website that was about having a birth verse. Each day of the year has a specific Bible verse. I looked up my verse. My birthday is May 7. The verse that came up was 1 Peter 5:7 Cast all your anxiety on him because he cares for you. When I step back and take a look at my life, the life God gave me, that verse speaks volumes.

I have battled with anxiety for many years. The amount of time that I have spent waiting in waiting rooms, exam rooms, treatment rooms, and hospital rooms is simply overwhelming. How do I get through it? It really depends on where I am. Many people recognize me by my sewing. If I'm waiting with Keith or Nick in a treatment room, hospital room, or waiting room, I will usually have some type of hand sewing that I am working on. If my hands are busy, my mind is usually busy and it passes the time in a constructive way. Now, if we are in a exam room or elsewhere and it is test result day, I am just waiting. I am not able to concentrate long enough to get anything done. I am trying to make myself stay in my seat and not pace. Yes, I can be a pacer.

Overcoming that huge amount of stress has been a challenge. I would work myself up into a frenzy in the days preceding "that visit". So, you can imagine the state I would be in by the time we would actually be sitting there. It has taken me a long time to find what works for me. The thing that works best for me is repeatedly praying the Lord's Prayer. While praying, I meditate on the words and their meaning. The part that always strikes me is..."Thy will be done on earth, as it is in heaven." Wow! What a realization I had when I came to terms with the fact that I was sitting where I was, because it was God's will. Then, I am faced with the realization of what God has entrusted me with. He trusted me with the lives of three very special people. I am their caregiver, wife, mother, supporter, advocate, and (as another friend lovingly says) their bulldozer driver.

Talk about a reality check. I realize there may be a hundred other things I would rather be doing, but nothing could keep me away from being right there, right at that moment.

I don't know if any sense can be made out of all this today, but I can say that I felt pressed to write about it. I have made waiting one of my talents. It is one that I do well...most of the time.

I've included the link to the birth verse website. I hope God speaks to you through it as well.

http://www.birthverse.com/mybirthverse.cfm


Cast all your anxiety on him because he cares for you. 1 Peter 5:7

The First Day

For many years, I have been asked why I didn't have a website. I don't really know the answer to that. I've always enjoyed updating everyone via email. I haven't ever found it to be a bother. However, for the last several weeks (maybe months), I have been feeling overwhelmed with the need to write more in depth about what is going on within our family. Most of my email updates consist of the latest medical news about Nick or Keith. There isn't as much about what is going on with us emotionally, spiritually, or physically. I am hoping that I can use this blog as a way to journal thoughts, feelings, worries, etc. that are just too consuming to be contained in an email. Much of the time, I imagine I will be rambling. Hopefully, I will be able to give a small glimpse of our daily walk not only with cancer, but with Christ.

I named this blog the way I did, because so much of the time I feel like I am in the eye of the storm. I have weathered the first wave, but there is another one surely to follow. So many times, I have to refrain from asking "What now, Lord?" If I have learned anything during the last 12 1/2 years, it is don't ask "What else?" It seems like that question gets answered ten-fold.

Keith had his last treatment today. So, I guess his break officially begins tomorrow. I don't know exactly how to feel about this break. Don't get me wrong, I am excited. The prospect of having even one treatment off is thrilling, but it scares me. There, I've said it! I am scared of this break. I guess it isn't the break I'm afraid of, but what comes after. Once again, we are entering the unknown. I feel like God has got something great and wonderful in store for us. I just wish I knew.

I'm not good with the unknown. Right now, one of my greatest fears is living this life without Keith by my side. With his diagnosis, that is a reality that we must face. It is such a comfort and joy to know that even though he isn't with me, he WILL be with the Heavenly Father. WOW! what an amazing thought. My mind will wander at the worst of times and I find myself thinking about "what-if's". One of my "what-if's" is of Keith kneeling at the feet of our Father. The joy that will be radiating from his face. The healing that couldn't be found here on earth will be evident. What a wonderful place for Keith to be! Then, my human side takes over and I am overwhelmed with sadness and grief. Selfishly, I want him here with me and the kids. Nick and Kacie absolutely adore Keith. I hurt so bad to think of them growing up without Keith. If I'm not careful, that sadness and grief can quickly move into anger and resentment. That is usually when I take a few minutes to cry about it, and then release all of it to God.

Several very wise friends over the years have told me that God can handle anything I throw at Him. How foolish I feel, when I remember that God already knows everything I am thinking and feeling.

Many times, Keith and I will receive a note of encouragement from someone. A good portion of the time, the note will contain scripture. One verse that has repeatedly shown up is Jeremiah 29:11. I've included it today, more for me than for you. It always reminds me that God has my best interests at heart. He never guaranteed me that there wouldn't be pain or suffering, but He will see me through to the glorious conclusion.


"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11