Waiting is Hard
Waiting is hard.
No news isn’t always bad news.
Be open-minded.
All these thoughts are on a continual loop in my mind.
Since Mike’s first round of treatments ended Dec. 19, 2013, we’ve enjoyed a respite from daily trips for radiation and alarms set for medications. Some of the side effects still linger – fatigue, blurred vision, ears ringing and hair loss – but some have improved in regard to burned skin and periodic headaches.
Christmas was special. We celebrated Mike’s birthday and the end of treatments with a quick trip to Tulsa. We visited a couple of special friends, did some shopping, and slept … a lot. My parents and grandma came to our house for Christmas Eve/Christmas morning. We attempted a 1000-piece puzzle, enjoyed a roaring fire, checked on Santa sightings, laughed, and listened to Mike’s son, Joe, preach the Christmas Eve service via Apple TV from his church in El Paso, Texas.
We opened gifts and welcomed my brother and his family on Christmas Day for a late lunch. It’s so good to see Mike more easily engaged in conversation now. His thoughts flow well, he understands others better, and although he might not always recall the names of people, places and things he remembers the context.
The feelings are back too – a big answer to prayer. Some are different and, ironically, with the removal of “gray matter” has come the absence of gray areas in explanation of how he feels or makes decisions. “Things are good or bad, right or wrong.” This phrase is heard quite often. I don’t necessarily disagree.
New Years came and went. As loyal alumni of Oklahoma State University we made the pilgrimage to the Cotton Bowl thanks to tickets from a friend. Although our Cowboys have had a good season – the only two games we were able to attend was Bedlam and the Jan. 3 contest. I wouldn't say we provided any luck or "magic" to them.
But, always in the back of our minds is Jan. 14, 2014.
The first major MRI scan at MD Anderson is scheduled for 8:00 p.m. to see how well Mike's brain has responded to treatments and remains absent of any visible signs of a tumor. There is documented proof that a grade IV glioblastoma is capable of regenerating itself within 48 hours of a resection. As a recap, Mike’s surgery was Oct. 7, 2013 and he had a clear scan when he started treatment on Nov. 7, 2013. The scan next week puts him a little more than 13 weeks out from surgery and nine weeks since his last scan. It's a milestone.
On Jan. 15, Mike undergoes follow up neurological psychology testing to evaluate his progress in creating new pathways the past few months as his brain heals for speech, comprehension and memory. At 3 p.m., we meet with Dr. Mark Gilbert, our medical oncologist at MD Anderson, to review the results of the scan.
We stay positive more often than not, but the wait is hard. The reality is the rest of our life together on earth will include some sort of waiting. We focus on as much of the positive outcomes we can, but we believe it’s important to at least have one foot in reality. The more research we do we understand what the milestones will be requiring constant prayer:
1) Five days of chemotherapy every month in 2014. Mike’s daily dose of Temodar the first six weeks of treatment was 160mg. His blood platelets were always normal and he experienced only a loss of appetite and very little nausea. This month, he will take 400mg a day for five days. If he tolerates it well, the dosage will be increased to 500mg for the five-day treatments the remaining 11 months. There is a higher probability with the increased dose he may experience more side effects than he did on the lower dose.
2) For at least the next 24 months, Mike will have an MRI scan every six to eight weeks. As I shared before, this cancer is not “curable” based on current medical science capabilities – it’s “manageable.” Part of the waiting that’s hard is knowing it will come back, but timing or re-occurrence ranges from immediate to many, many years from now.
As wonderful as the last two weeks of December were, the holidays are also painful. They’re painful for those who have suffered personal loss with first reminders a loved one is missing. And although Mike is very much with us, I was completely caught unaware by a flood of tears while out shopping because of a particular Christmas song that was playing in the store. The thought of what the loss would feel like sneaks up on me a lot. But, ultimately, there has been greater clarity in the midst of the pain. I fully expect Mike to be a survivor.
“The good or bad, right or wrong” attitude is applied to how we spend our time as well. There is more focus on making the most each day with each other and with our kids. And although you don’t have to guess much about how Mike feels right now – he’s more transparent and forthright than he’s ever been – I’m finding more freedom and comfort in not avoiding my emotions like I’ve done so much in the past. I'm not embarrassed by my tears. I also find myself being more honest and taking greater account of relationships and time. Time, energy and emotions are precious.
Faith is a large part of our journey. We’ve been greatly comforted by expressions of support, positive thoughts and heartfelt prayers. In my daily readings, one of the new habits that have been encouraged is to try saying, “I trust You, Jesus/God,” in response to whatever is happening to you. For the past several days this is how that conversation goes …
“I trust You Jesus … I trust You Jesus … Why now? What can really be accomplished by my son growing up without a father … I trust You Jesus … I trust You Jesus … How does hitting us from all directions really draw me closer? I just feel angry and sad … I trust You Jesus … I trust You Jesus … I trust You Jesus … I know you love me, I love you too. I know there are others who face so many more trials, but this really hurts … I trust You Jesus … I trust You Jesus … Do you not believe that I love you? Am I being punished? … I trust You Jesus … Will you heal him? Will you just take this away and I promise to sing your praises? Please? … I trust You Jesus … I trust You Jesus … Will our prayers be answered? … I trust You Jesus.”
Yes, I’m closer to my Heavenly Father than I've ever been. I have a greater understanding of what being homesick for heaven means. Many days it’s only through silent prayer I can slow a racing heart, inhale a deep breath, stop a flow of tears, a wave of anger – or some days – it's a continual request to just make it through.
The devotional from yesterday’s Jesus Calling is copied and in front of me as a prayer I must pray daily for the rest of my life. It’s a prayer for Mike, my family, my children and Mike’s sons.
“I am able to do far beyond all that you ask or imagine. Come to Me with positive expectations, knowing that there is no limit to what I can accomplish. Ask My Spirit to control your mind so that you can think great thoughts of Me. Do not be discouraged by the fact that many of your prayers are yet unanswered. Time is a trainer, teaching you to wait upon Me, to trust Me in the dark.
The more extreme your circumstances, the more likely you are to see My Power and Glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. Keep your eyes and your mind open to all that I am doing in your life.”
Amen.
No news isn’t always bad news.
Be open-minded.
All these thoughts are on a continual loop in my mind.
Since Mike’s first round of treatments ended Dec. 19, 2013, we’ve enjoyed a respite from daily trips for radiation and alarms set for medications. Some of the side effects still linger – fatigue, blurred vision, ears ringing and hair loss – but some have improved in regard to burned skin and periodic headaches.
Christmas was special. We celebrated Mike’s birthday and the end of treatments with a quick trip to Tulsa. We visited a couple of special friends, did some shopping, and slept … a lot. My parents and grandma came to our house for Christmas Eve/Christmas morning. We attempted a 1000-piece puzzle, enjoyed a roaring fire, checked on Santa sightings, laughed, and listened to Mike’s son, Joe, preach the Christmas Eve service via Apple TV from his church in El Paso, Texas.
We opened gifts and welcomed my brother and his family on Christmas Day for a late lunch. It’s so good to see Mike more easily engaged in conversation now. His thoughts flow well, he understands others better, and although he might not always recall the names of people, places and things he remembers the context.
The feelings are back too – a big answer to prayer. Some are different and, ironically, with the removal of “gray matter” has come the absence of gray areas in explanation of how he feels or makes decisions. “Things are good or bad, right or wrong.” This phrase is heard quite often. I don’t necessarily disagree.
New Years came and went. As loyal alumni of Oklahoma State University we made the pilgrimage to the Cotton Bowl thanks to tickets from a friend. Although our Cowboys have had a good season – the only two games we were able to attend was Bedlam and the Jan. 3 contest. I wouldn't say we provided any luck or "magic" to them.
But, always in the back of our minds is Jan. 14, 2014.
The first major MRI scan at MD Anderson is scheduled for 8:00 p.m. to see how well Mike's brain has responded to treatments and remains absent of any visible signs of a tumor. There is documented proof that a grade IV glioblastoma is capable of regenerating itself within 48 hours of a resection. As a recap, Mike’s surgery was Oct. 7, 2013 and he had a clear scan when he started treatment on Nov. 7, 2013. The scan next week puts him a little more than 13 weeks out from surgery and nine weeks since his last scan. It's a milestone.
On Jan. 15, Mike undergoes follow up neurological psychology testing to evaluate his progress in creating new pathways the past few months as his brain heals for speech, comprehension and memory. At 3 p.m., we meet with Dr. Mark Gilbert, our medical oncologist at MD Anderson, to review the results of the scan.
We stay positive more often than not, but the wait is hard. The reality is the rest of our life together on earth will include some sort of waiting. We focus on as much of the positive outcomes we can, but we believe it’s important to at least have one foot in reality. The more research we do we understand what the milestones will be requiring constant prayer:
1) Five days of chemotherapy every month in 2014. Mike’s daily dose of Temodar the first six weeks of treatment was 160mg. His blood platelets were always normal and he experienced only a loss of appetite and very little nausea. This month, he will take 400mg a day for five days. If he tolerates it well, the dosage will be increased to 500mg for the five-day treatments the remaining 11 months. There is a higher probability with the increased dose he may experience more side effects than he did on the lower dose.
2) For at least the next 24 months, Mike will have an MRI scan every six to eight weeks. As I shared before, this cancer is not “curable” based on current medical science capabilities – it’s “manageable.” Part of the waiting that’s hard is knowing it will come back, but timing or re-occurrence ranges from immediate to many, many years from now.
As wonderful as the last two weeks of December were, the holidays are also painful. They’re painful for those who have suffered personal loss with first reminders a loved one is missing. And although Mike is very much with us, I was completely caught unaware by a flood of tears while out shopping because of a particular Christmas song that was playing in the store. The thought of what the loss would feel like sneaks up on me a lot. But, ultimately, there has been greater clarity in the midst of the pain. I fully expect Mike to be a survivor.
“The good or bad, right or wrong” attitude is applied to how we spend our time as well. There is more focus on making the most each day with each other and with our kids. And although you don’t have to guess much about how Mike feels right now – he’s more transparent and forthright than he’s ever been – I’m finding more freedom and comfort in not avoiding my emotions like I’ve done so much in the past. I'm not embarrassed by my tears. I also find myself being more honest and taking greater account of relationships and time. Time, energy and emotions are precious.
Faith is a large part of our journey. We’ve been greatly comforted by expressions of support, positive thoughts and heartfelt prayers. In my daily readings, one of the new habits that have been encouraged is to try saying, “I trust You, Jesus/God,” in response to whatever is happening to you. For the past several days this is how that conversation goes …
“I trust You Jesus … I trust You Jesus … Why now? What can really be accomplished by my son growing up without a father … I trust You Jesus … I trust You Jesus … How does hitting us from all directions really draw me closer? I just feel angry and sad … I trust You Jesus … I trust You Jesus … I trust You Jesus … I know you love me, I love you too. I know there are others who face so many more trials, but this really hurts … I trust You Jesus … I trust You Jesus … Do you not believe that I love you? Am I being punished? … I trust You Jesus … Will you heal him? Will you just take this away and I promise to sing your praises? Please? … I trust You Jesus … I trust You Jesus … Will our prayers be answered? … I trust You Jesus.”
Yes, I’m closer to my Heavenly Father than I've ever been. I have a greater understanding of what being homesick for heaven means. Many days it’s only through silent prayer I can slow a racing heart, inhale a deep breath, stop a flow of tears, a wave of anger – or some days – it's a continual request to just make it through.
The devotional from yesterday’s Jesus Calling is copied and in front of me as a prayer I must pray daily for the rest of my life. It’s a prayer for Mike, my family, my children and Mike’s sons.
“I am able to do far beyond all that you ask or imagine. Come to Me with positive expectations, knowing that there is no limit to what I can accomplish. Ask My Spirit to control your mind so that you can think great thoughts of Me. Do not be discouraged by the fact that many of your prayers are yet unanswered. Time is a trainer, teaching you to wait upon Me, to trust Me in the dark.
The more extreme your circumstances, the more likely you are to see My Power and Glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. Keep your eyes and your mind open to all that I am doing in your life.”
Amen.
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