It has been just over one week since Andrew finished his treatments. Andrew was feeling pretty discouraged, as he said he felt worse than he had during all the treatments. He was very exhausted, sleeping a lot until Monday, making his moods very low too.
Worse than the exhaustion, though, was the area around his mouth. His voice each day has increasingly become more hoarse, making it harder and harder for him to talk. His saliva, thicker than any mucous, has been causing him to gag frequently and up until last Saturday was causing him to throw up. His skin has been peeling off his neck, yellow slime slicking around it. But his pain meds are so strong that there were times he would scratch himself and wouldn't realize he was making himself bleed.
At the same time, being on the outside, and not experiencing the physical suffering that he was, which I'm sure made the days seem excruciatingly long for him, I felt so hopeful. I could see his energy increasing with each day and we had all gone bike riding together again on Tuesday, which is always a good sign. From the outside, I had learned that despite the downward dips, Andrew eventually floated to the surface again.
Nonetheless, Andrew was still in the depths. Andrew didn't feel human, he's been through so much suffering, so different than the strong, exceptionally capable man he was. Seeing people in public made Andrew feel so different than them, handicapped. Andrew hadn't consumed anything through his mouth in weeks. And he feared this was his life.
Yet. Last night, I felt hungry just as I was about to go to sleep, so I brought up a bowl of food to my room, thinking Andrew was still asleep, as he had retired a few hours earlier. When I arrived there, though, he was awake. I figured he wouldn't mind me eating, though, because he always sits with us during our meals anyway. I had a bowl of Indian food, Palak Paneer, which is basically a thick spinach sauce with tomatoes and spices. I had added too much water to the new brand of brown rice we had, so it was really soft. On top of the Palak Paneer, I had put yogurt to tone down the spicyness.
"That smells so good," Andrew said.
"Oh!" Whoops. "Wanna have some?" Why did I just say that?
"Fine...I'll just try some." I handed him my bowl. He took a spoonful, put it in his mouth, and made the motions of chewing, slowly. I had never seen him chew since before his surgery. He finished a spoonful.
Apparently, the sauce, over-soft rice, and yogurt was perfect for making it easy for him to eat.
I began to tear up.
"Is there more downstairs?" he asked.
"You can just have the rest!" I said.
He ate the whole bowlful. "Mmmm. That was so enjoyable," he said.
"Babe, you ate an entire bowl!" I said. I was tearing up more and truly was shocked.
He said, "It was really only five tablespoons."
Five heaping tablespoons. "You haven't eaten one teaspoon of anything at all in weeks. You're not even supposed to be able to eat at all through your mouth. And you're supposed to be worse off than ever right now."
"I didn't really eat it, I flushed it down with a lot of water. Course it was the most amount of food I've eaten in weeks," he said.
Exactly.
We prayed together to thank God for answering my prayer request that he would be able to eat a meal shockingly soon! Thank you for praying!
"For this reason I bow my knees to the Father of our Lord Jesus Christ, from whom the whole family in heaven and earth is named, that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, may be able to comprehend with all the saints [believers] what is the width and length and depth and height— to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."
- Ephesians 3:14-21
Friday, June 27, 2008
Monday, June 23, 2008
The Aftermath
Andrew finished his last radiation last Thursday, and we are so grateful. They always say, though, that he's supposed to get worse until two weeks after the treatments end, which seems to be the case.
Please pray for Andrew as he is feeling terribly exhausted and has often felt nauseated. On Friday, he threw up his hospital formula.
Andrew always used to nap in the car on the way home from radiation and continue his nap in our backyard, so he could still get fresh air, whether he would have the strength to bike ride or walk later in the day or not. So today since Andrew was feeling so exhausted, instead of walking, I drove us all to the park, and Andrew took a nap on some grass in the shade, while the kids played in the lake and the playground. Now we are all going to my sister's so that while the kids nap there, Andrew can nap somewhere different or watch a movie there. Gotta go!
Please pray for Andrew as he is feeling terribly exhausted and has often felt nauseated. On Friday, he threw up his hospital formula.
Andrew always used to nap in the car on the way home from radiation and continue his nap in our backyard, so he could still get fresh air, whether he would have the strength to bike ride or walk later in the day or not. So today since Andrew was feeling so exhausted, instead of walking, I drove us all to the park, and Andrew took a nap on some grass in the shade, while the kids played in the lake and the playground. Now we are all going to my sister's so that while the kids nap there, Andrew can nap somewhere different or watch a movie there. Gotta go!
Tuesday, June 17, 2008
Bike Rides and Sorbet
GRACE WRITES:
Praise God that today (Tuesday) Andrew received his last chemo treatment! I feel so grateful to the Lord for getting us through the past 6.5 weeks. Only two more radiation treatments left! Praise the Lord!
I want to thank all of you for the comments you left. Andrew had not been keeping up with all the new ones for the past couple of weeks. Tonight, he read some of them. Afterwards, Andrew updated the group at our prayer-for-him at our house that he didn't realize how discouraged he had been feeling until he felt so encouraged by reading your comments tonight. He was deeply moved by the things you wrote, seeing how much God truly is at work.
So keep the comments coming!
I think, too, that many of you must have been praying for us after I wrote that update on "Five Weeks of Treatment Down." Because last week a lot of the things I had written that weren't going so great went well last week. For instance, Andrew didn't go through a Tuesday night dip into misery that normally lasts 3 or 4 days. He started feeling good on Sunday and it lasted until Saturday! As a result, he was able to go bike riding every day, which made him feel a lot better and also made his sleep much better. He said the biking relieved a lot of the soreness his muscles were feeling from sleeping so much, and it also stretched his neck because you have to look up when you're riding a bike. So even though he was up and about more, he felt like he was getting more rest than normal.
One day we went on a really long bike ride for a half hour (well, long relative to what Andrew can handle) together around one of the lakes near our house and then around the neighborhood. Later, I found out he would have gone faster [if not for me slowing him down=) (Hey, my default is to enjoy the scenery. It never occurs to me to be fast)]. Andrew had so much energy, he was talking so much, I can't even remember the last time he talked that much. Hearing from my Andrew made me feel like I had my old Andrew back.
When we were riding, he said, "Hey, let's take turns choosing which way to turn. Remember when we were dating and we were driving one night and we decided to take turns saying which way to turn?" We had had no destination that afternoon in California and figured our random turns would eventually take us somewhere fun. As we found ourselves at Dockweiler Beach, we decided our goal should be to make a bonfire without spending any money and without having to return home. So Andrew took me to a wood dumpster - which of course somehow he knew exactly where one was - outside a fenced building being constructed. Being that we were in Los Angeles and people are generally not outwardly rude, no one walking by made any indication of staring as we jumped in and out of a dumpster and loaded large slabs of wood into Andrew's car (It was very clean by the way. Only wood was in the dumpster).
Then Andrew took me to Seven Eleven to pick up some lighter fluid for $1 - okay we exceeded our zero budget - but it afforded us a free book of matches. Outside of Seven Eleven, Andrew grabbed a variety of free magazines to get the fire started. When we arrived at the beach, all the bonfire pits were taken, so we sat on the sand and watched an incredible sunset with pink and violet streaking the sky. Out of Andrew's mouth slipped that if someone asked him how things were going between us he would tell them how he had fallen madly in love. I didn't want him to tell me he loved me until he asked me to marry him, so I exclaimed, "What?" and he laughed, and said, "Oh just kidding."
Somehow me ruining the moment didn't ruin the moment at all. I think the New Jersey culture in us made us able to say really blunt or abrasive things or back and forth make fun of each other and it was all laugh-out-loud hilarious to us.
A few mintues later, a family finished their bonfire and waved us over to offer us their pit. That was so nice of them. And for $1 Andrew made us a giant bonfire.
Biking through our neighborhood of Eden Prairie also made me think about why we hadn't ridden bikes together in years. The last time had been a few days after I found out I was pregnant with A.J., and I was having a miserable first trimester. While we were biking, I had said, "I don't like bike riding. I don't want to do this anymore," which actually was news to me as it came out of my mouth.
And Andrew had said, "No, it's just because you're pregnant...And you're going uphill...And your tire is flat."
Yeah for some reason reason I rode my bike even though we both knew there was a hole in my tire.
When we returned home from biking last week, after dinner, Andrew said he felt like eating something soft like yogurt, but not yogurt. We just got this special juicer where on a certain setting if you put frozen blueberries in it, it comes out as sorbet. So I made some for Andrew and everyone, and not only was Andrew able to eat the whole bowlful, he said, "Mmmmm. That was so satisfying."
I was so excited and happy and praising God. Just that afternoon after a difficult attempt to eat an avocado, he had been feeling discouraged that he would never be able to enjoy food again, and yet here was a glimpse of hope.
In addition to biking together last week, feeling like I had access to my Andrew again, and him enjoying blueberry sorbet, Andrew never threw up those several days. Doesn't it sound like these surprises are the fruit of your prayers for us?
After last year's cancer, my aunt introduced me to a lot of books on nutrition. I skimmed them with a lot of skepticism. Then, Andrew's co-worker, who had oral cancer 25 years ago, told us about The China Study by Cornell professor and leading nutritional giant, Colin T. Campbell. This co-worker was diagnosed with radiation-induced cancer in his mouth shortly after Andrew completed his treatments last year, but this man's tumors began healing themselves simply by changing his diet a few months ago. No other types of treatment. Our ears were perked. This was no infomercial. This was someone Andrew actually knew in real life and accomplished what he claimed. And it was the type of cancer directly related to what Andrew was going through. So we read The China Study and it was an epiphany for the both of us. It was the scientific evidence I needed and became the framework through which I filtered all the books I read about nutrition. I read this book only weeks before Andrew's diagnosis.
And so, I went back to the books my aunt had given me and read them more carefully. My aunt has been really into nutrition for years and since her husband is a doctor, she also reads his medical journals. As a result of all I read, after Andrew returned home from the hospital in April, we started him on an intensive nutritional diet, including about 8 cups of fresh carrot juice with beat, ginger, garlic, leafy greens, etc. each day and homemade formula made from real, healthy foods that included the calories, fats, proteins, and fiber he needs. I love juicing for Andrew, feeling like every cupful is like what I thought medicine was as a child, rather than masking symptoms, it truly heals his body. Often, when I'm juicing I find my heart exulting in worship of God, who does all things excellently and mercifully created food that is so healing and nourishing to our bodies.
My hope is not in nutrition, just as it is not in doctors. My hope is in God and God alone. But I believe God usually works through means nowadays. When someone drives to work, God provided the means for him to get there - a car, a ride, etc. But it was the Lord who provided that car and it was the Lord who made the car work, and it was the Lord who got him safely to work. In the same way, I believe that if God provides the means, a doctor, nutrition, etc. to heal a person, it's because God has provided those means. Sometimes those means work, sometimes they don't. Sometimes God makes something not work when it should have, and sometimes God makes it work better than it should have. Sometimes He just plain miraculously does something that no one can explain. Either way, it's because God made it do what He chose to do. Either way praise God because He is sovereign and has dominion over all things and all things are from His hand.
I always run the nutritional things I'm doing by our radiation doctors. They have actually been very supportive and have encouraged us to continue to do it, saying it's supported by studies. Nonetheless, when Andrew and I committed to radiation and chemo, we agreed that to make it through, if Andrew couldn't tolerate the natural stuff I made for him anymore, he would have to resort to the hospital formula.
As the chemo further depleted him and things like his hematocrit would go down making him anemic, I would do things like add lots of spinach to his juices to compensate, and things like that were really working. But as he got sicker and sicker, more and more formula started to replace his normal foods. By week 5 of treatment, it got to the point where sometimes he even threw up the hospital formula.
I began feeling nervous about increasingly not being able to give Andrew fresh juices and homemade formula. I was concerned that as he got more and more nauseated, and thus had less and less of the nutrition I wanted to give him, he would continue in a downward spiral of sickness and worse and worse health.
Well, since he didn't feel nauseated last week, he was able to tolerate tons of juice, as well as the homemade formula. I made the juice much simpler than before and only put carrot juice with broccoli or celery. He said the fresh carrot juice soothed his stomach and gave him loads of energy, which then allowed him to exercise a lot. (Carrot juice gives you lots of energy, except unlike the lattes I so enjoy, it's extremely good for you and healing, even essential). So instead of a downward spiral, he went in an upward spiral of improvement. In fact, his lab results from yesterday show that for the first time since he started his treatments, he is not anemic, despite how after 7 weeks of treatment, he is supposed to be worse off than ever.
I went back today and looked at Andrew's lab results from last year, before we had read any of the books I had mentioned, and in August, two months after he had finished his course of treatments, he was still very anemic, more anemic than he had ever been this round of treatments.
Andrew for some reason felt nauseated this weekend. So this week I would really like to pray that the Lord would spare Andrew from nausea and that he would be able to get all the nourishment he needs.
I also really want to pray that he would be able to eat a full meal through his mouth shockingly soon.
Thanks so much for your encouragement and prayers. I don't think you all know just how much you help us through both of them.
Please continue to pray for our PLEES!
Praise God that today (Tuesday) Andrew received his last chemo treatment! I feel so grateful to the Lord for getting us through the past 6.5 weeks. Only two more radiation treatments left! Praise the Lord!
I want to thank all of you for the comments you left. Andrew had not been keeping up with all the new ones for the past couple of weeks. Tonight, he read some of them. Afterwards, Andrew updated the group at our prayer-for-him at our house that he didn't realize how discouraged he had been feeling until he felt so encouraged by reading your comments tonight. He was deeply moved by the things you wrote, seeing how much God truly is at work.
So keep the comments coming!
I think, too, that many of you must have been praying for us after I wrote that update on "Five Weeks of Treatment Down." Because last week a lot of the things I had written that weren't going so great went well last week. For instance, Andrew didn't go through a Tuesday night dip into misery that normally lasts 3 or 4 days. He started feeling good on Sunday and it lasted until Saturday! As a result, he was able to go bike riding every day, which made him feel a lot better and also made his sleep much better. He said the biking relieved a lot of the soreness his muscles were feeling from sleeping so much, and it also stretched his neck because you have to look up when you're riding a bike. So even though he was up and about more, he felt like he was getting more rest than normal.
One day we went on a really long bike ride for a half hour (well, long relative to what Andrew can handle) together around one of the lakes near our house and then around the neighborhood. Later, I found out he would have gone faster [if not for me slowing him down=) (Hey, my default is to enjoy the scenery. It never occurs to me to be fast)]. Andrew had so much energy, he was talking so much, I can't even remember the last time he talked that much. Hearing from my Andrew made me feel like I had my old Andrew back.
When we were riding, he said, "Hey, let's take turns choosing which way to turn. Remember when we were dating and we were driving one night and we decided to take turns saying which way to turn?" We had had no destination that afternoon in California and figured our random turns would eventually take us somewhere fun. As we found ourselves at Dockweiler Beach, we decided our goal should be to make a bonfire without spending any money and without having to return home. So Andrew took me to a wood dumpster - which of course somehow he knew exactly where one was - outside a fenced building being constructed. Being that we were in Los Angeles and people are generally not outwardly rude, no one walking by made any indication of staring as we jumped in and out of a dumpster and loaded large slabs of wood into Andrew's car (It was very clean by the way. Only wood was in the dumpster).
Then Andrew took me to Seven Eleven to pick up some lighter fluid for $1 - okay we exceeded our zero budget - but it afforded us a free book of matches. Outside of Seven Eleven, Andrew grabbed a variety of free magazines to get the fire started. When we arrived at the beach, all the bonfire pits were taken, so we sat on the sand and watched an incredible sunset with pink and violet streaking the sky. Out of Andrew's mouth slipped that if someone asked him how things were going between us he would tell them how he had fallen madly in love. I didn't want him to tell me he loved me until he asked me to marry him, so I exclaimed, "What?" and he laughed, and said, "Oh just kidding."
Somehow me ruining the moment didn't ruin the moment at all. I think the New Jersey culture in us made us able to say really blunt or abrasive things or back and forth make fun of each other and it was all laugh-out-loud hilarious to us.
A few mintues later, a family finished their bonfire and waved us over to offer us their pit. That was so nice of them. And for $1 Andrew made us a giant bonfire.
Biking through our neighborhood of Eden Prairie also made me think about why we hadn't ridden bikes together in years. The last time had been a few days after I found out I was pregnant with A.J., and I was having a miserable first trimester. While we were biking, I had said, "I don't like bike riding. I don't want to do this anymore," which actually was news to me as it came out of my mouth.
And Andrew had said, "No, it's just because you're pregnant...And you're going uphill...And your tire is flat."
Yeah for some reason reason I rode my bike even though we both knew there was a hole in my tire.
When we returned home from biking last week, after dinner, Andrew said he felt like eating something soft like yogurt, but not yogurt. We just got this special juicer where on a certain setting if you put frozen blueberries in it, it comes out as sorbet. So I made some for Andrew and everyone, and not only was Andrew able to eat the whole bowlful, he said, "Mmmmm. That was so satisfying."
I was so excited and happy and praising God. Just that afternoon after a difficult attempt to eat an avocado, he had been feeling discouraged that he would never be able to enjoy food again, and yet here was a glimpse of hope.
In addition to biking together last week, feeling like I had access to my Andrew again, and him enjoying blueberry sorbet, Andrew never threw up those several days. Doesn't it sound like these surprises are the fruit of your prayers for us?
After last year's cancer, my aunt introduced me to a lot of books on nutrition. I skimmed them with a lot of skepticism. Then, Andrew's co-worker, who had oral cancer 25 years ago, told us about The China Study by Cornell professor and leading nutritional giant, Colin T. Campbell. This co-worker was diagnosed with radiation-induced cancer in his mouth shortly after Andrew completed his treatments last year, but this man's tumors began healing themselves simply by changing his diet a few months ago. No other types of treatment. Our ears were perked. This was no infomercial. This was someone Andrew actually knew in real life and accomplished what he claimed. And it was the type of cancer directly related to what Andrew was going through. So we read The China Study and it was an epiphany for the both of us. It was the scientific evidence I needed and became the framework through which I filtered all the books I read about nutrition. I read this book only weeks before Andrew's diagnosis.
And so, I went back to the books my aunt had given me and read them more carefully. My aunt has been really into nutrition for years and since her husband is a doctor, she also reads his medical journals. As a result of all I read, after Andrew returned home from the hospital in April, we started him on an intensive nutritional diet, including about 8 cups of fresh carrot juice with beat, ginger, garlic, leafy greens, etc. each day and homemade formula made from real, healthy foods that included the calories, fats, proteins, and fiber he needs. I love juicing for Andrew, feeling like every cupful is like what I thought medicine was as a child, rather than masking symptoms, it truly heals his body. Often, when I'm juicing I find my heart exulting in worship of God, who does all things excellently and mercifully created food that is so healing and nourishing to our bodies.
My hope is not in nutrition, just as it is not in doctors. My hope is in God and God alone. But I believe God usually works through means nowadays. When someone drives to work, God provided the means for him to get there - a car, a ride, etc. But it was the Lord who provided that car and it was the Lord who made the car work, and it was the Lord who got him safely to work. In the same way, I believe that if God provides the means, a doctor, nutrition, etc. to heal a person, it's because God has provided those means. Sometimes those means work, sometimes they don't. Sometimes God makes something not work when it should have, and sometimes God makes it work better than it should have. Sometimes He just plain miraculously does something that no one can explain. Either way, it's because God made it do what He chose to do. Either way praise God because He is sovereign and has dominion over all things and all things are from His hand.
I always run the nutritional things I'm doing by our radiation doctors. They have actually been very supportive and have encouraged us to continue to do it, saying it's supported by studies. Nonetheless, when Andrew and I committed to radiation and chemo, we agreed that to make it through, if Andrew couldn't tolerate the natural stuff I made for him anymore, he would have to resort to the hospital formula.
As the chemo further depleted him and things like his hematocrit would go down making him anemic, I would do things like add lots of spinach to his juices to compensate, and things like that were really working. But as he got sicker and sicker, more and more formula started to replace his normal foods. By week 5 of treatment, it got to the point where sometimes he even threw up the hospital formula.
I began feeling nervous about increasingly not being able to give Andrew fresh juices and homemade formula. I was concerned that as he got more and more nauseated, and thus had less and less of the nutrition I wanted to give him, he would continue in a downward spiral of sickness and worse and worse health.
Well, since he didn't feel nauseated last week, he was able to tolerate tons of juice, as well as the homemade formula. I made the juice much simpler than before and only put carrot juice with broccoli or celery. He said the fresh carrot juice soothed his stomach and gave him loads of energy, which then allowed him to exercise a lot. (Carrot juice gives you lots of energy, except unlike the lattes I so enjoy, it's extremely good for you and healing, even essential). So instead of a downward spiral, he went in an upward spiral of improvement. In fact, his lab results from yesterday show that for the first time since he started his treatments, he is not anemic, despite how after 7 weeks of treatment, he is supposed to be worse off than ever.
I went back today and looked at Andrew's lab results from last year, before we had read any of the books I had mentioned, and in August, two months after he had finished his course of treatments, he was still very anemic, more anemic than he had ever been this round of treatments.
Andrew for some reason felt nauseated this weekend. So this week I would really like to pray that the Lord would spare Andrew from nausea and that he would be able to get all the nourishment he needs.
I also really want to pray that he would be able to eat a full meal through his mouth shockingly soon.
Thanks so much for your encouragement and prayers. I don't think you all know just how much you help us through both of them.
Please continue to pray for our PLEES!
Sunday, June 15, 2008
My Nephew, Isaac
GRACE WRITES:
Hi everyone, some of you may be wondering how my new nephew, Isaac, is doing. Here is an update from my brother-in-law that he wrote a few weeks ago:
Dear brothers and sisters,
Thank you so much for your outpouring of affection and concern for Gayle and Isaac. It is an encouragement to me beyond words that our church family would love us so much, and in such concrete ways. I thank you on behalf of all the Glennians!
Isaac Romeo Glenn was born at 2.0 lbs., 14.2 in., 14 weeks prematurely. He is therefore held up in the NICU (neonatal intensive care unit) at Children’s Hospital in Minneapolis. Depending on his course, he will be there till his due date (August 28). He cannot receive visitors, unless they are accompanied by Gayle or me. And even then, they are only permitted to see him for ten minutes between 9 am and 9 pm. Children are never permitted in the NICU, except for the siblings of the child. However, because there is a case of RSV in the hospital, not even our kids can see him right now. So although I’m sure you’d like to stop by to see how he’s doing, right now visiting him is a practical impossibility. In addition, we would ask that you not ask to visit him with us, as his condition is such that he needs all his energy for his continued development. We’ll certainly let you know when this changes...
Now to Isaac:
Two words have been used to describe him: “feisty” and “superstar.” He’s feisty because when he’s awake he’s flailing all over the place and because when he’s asleep he gets very irritated with anyone who wakes him! Gayle says this reminds her of someone. I’m not sure who.
He’s been called a superstar because of how well he is doing despite the precarious nature of the situation in which he finds himself. For example, in order to rule out an infection in his spinal fluid, he had to undergo a spinal tap yesterday morning. The procedure alone typically puts a good deal of stress on the baby, but Isaac lay on his side while he sucked a pacifier, and did extremely well. Our nurse said that he amazed everyone. We know this is the fruit of your prayers.
Currently, we’re awaiting results from a head ultrasound that will determine if he has any “bleeders” in his brain. Babies born 22-24 weeks are at the greatest risk for this complication, so Isaac is not in the worst position; however, he is still at risk. I asked the doctor what the medical course would be if Isaac were to have a bleeder: “Do you perform surgery?” “No, there’s nothing we can do. If he does have a bleeder, and if it’s small enough, his body may be able to reabsorb the blood. But if the bleeder is too large…” I interrupted, “It can be fatal?” “Yes, it can be fatal.” So please pray that Isaac’s head ultrasound would be clear.
Children at this age are also at risk for eye problems, as their retinas are not fully developed. An ophthalmologist will see Isaac toward the middle of next week to measure his progress. Pray that he would have no complications with his vision.
Finally, although there is a very high survival rate for babies born at 26 weeks, we cannot put our hope in all the wonderful medical ingenuity that God has given us by his providence. Although I am extremely thankful for the practices of neonatology and perinatology, our hope is in the Lord, and the Lord alone. Isaac is God’s, and He will have His way with him. Pray that we would continue to believe that God’s way is the best, most loving way in the universe.
We love you all, and thank you so much for your kindness and prayers.
Blessings, Pastor Bob
Zeph 3:17
As of today, June 15th, most of the above concerns are either resolved or are on it's way to being resolved. Isaac's tests and scans have come back without any problems. Nonetheless, Isaac is still just under 30 weeks old (if he were still in the womb). He is still developing, including his lungs, and still has lots of weight to gain. Next week, he will be moved out of NICU (neo-natal intensive care unit) and will be moved to a closer hospital, which he will remain in until his due date at 40 weeks. Sometimes he has sleep apnea, which is normal for his age, since his lungs are still developing, and they have to tap him on the back and remind him to breathe. Please continue to pray for Isaac's development and that he would be a thriving baby.
It's funny that my sister is going through such similar things as I am with Andrew. Blood transfusions (the baby loses a lot of blood from being pricked and checked so much, and Andrew received blood transfusions every day while he was in ICU), spending so much of her day making food for the baby (she has to pump milk every two hours, while I spend hours juicing and making Andrew's homemade formula - neither of them eat solid food), daily visits to the hospital, awaiting test results that could indicate life or death, and the list goes on. The Glenns are doing well, though, and as usual their spirits are up, they always make us laugh, and their family has a cheering effect on everyone they encounter.
Hi everyone, some of you may be wondering how my new nephew, Isaac, is doing. Here is an update from my brother-in-law that he wrote a few weeks ago:
Dear brothers and sisters,
Thank you so much for your outpouring of affection and concern for Gayle and Isaac. It is an encouragement to me beyond words that our church family would love us so much, and in such concrete ways. I thank you on behalf of all the Glennians!
Isaac Romeo Glenn was born at 2.0 lbs., 14.2 in., 14 weeks prematurely. He is therefore held up in the NICU (neonatal intensive care unit) at Children’s Hospital in Minneapolis. Depending on his course, he will be there till his due date (August 28). He cannot receive visitors, unless they are accompanied by Gayle or me. And even then, they are only permitted to see him for ten minutes between 9 am and 9 pm. Children are never permitted in the NICU, except for the siblings of the child. However, because there is a case of RSV in the hospital, not even our kids can see him right now. So although I’m sure you’d like to stop by to see how he’s doing, right now visiting him is a practical impossibility. In addition, we would ask that you not ask to visit him with us, as his condition is such that he needs all his energy for his continued development. We’ll certainly let you know when this changes...
Now to Isaac:
Two words have been used to describe him: “feisty” and “superstar.” He’s feisty because when he’s awake he’s flailing all over the place and because when he’s asleep he gets very irritated with anyone who wakes him! Gayle says this reminds her of someone. I’m not sure who.
He’s been called a superstar because of how well he is doing despite the precarious nature of the situation in which he finds himself. For example, in order to rule out an infection in his spinal fluid, he had to undergo a spinal tap yesterday morning. The procedure alone typically puts a good deal of stress on the baby, but Isaac lay on his side while he sucked a pacifier, and did extremely well. Our nurse said that he amazed everyone. We know this is the fruit of your prayers.
Currently, we’re awaiting results from a head ultrasound that will determine if he has any “bleeders” in his brain. Babies born 22-24 weeks are at the greatest risk for this complication, so Isaac is not in the worst position; however, he is still at risk. I asked the doctor what the medical course would be if Isaac were to have a bleeder: “Do you perform surgery?” “No, there’s nothing we can do. If he does have a bleeder, and if it’s small enough, his body may be able to reabsorb the blood. But if the bleeder is too large…” I interrupted, “It can be fatal?” “Yes, it can be fatal.” So please pray that Isaac’s head ultrasound would be clear.
Children at this age are also at risk for eye problems, as their retinas are not fully developed. An ophthalmologist will see Isaac toward the middle of next week to measure his progress. Pray that he would have no complications with his vision.
Finally, although there is a very high survival rate for babies born at 26 weeks, we cannot put our hope in all the wonderful medical ingenuity that God has given us by his providence. Although I am extremely thankful for the practices of neonatology and perinatology, our hope is in the Lord, and the Lord alone. Isaac is God’s, and He will have His way with him. Pray that we would continue to believe that God’s way is the best, most loving way in the universe.
We love you all, and thank you so much for your kindness and prayers.
Blessings, Pastor Bob
Zeph 3:17
As of today, June 15th, most of the above concerns are either resolved or are on it's way to being resolved. Isaac's tests and scans have come back without any problems. Nonetheless, Isaac is still just under 30 weeks old (if he were still in the womb). He is still developing, including his lungs, and still has lots of weight to gain. Next week, he will be moved out of NICU (neo-natal intensive care unit) and will be moved to a closer hospital, which he will remain in until his due date at 40 weeks. Sometimes he has sleep apnea, which is normal for his age, since his lungs are still developing, and they have to tap him on the back and remind him to breathe. Please continue to pray for Isaac's development and that he would be a thriving baby.
It's funny that my sister is going through such similar things as I am with Andrew. Blood transfusions (the baby loses a lot of blood from being pricked and checked so much, and Andrew received blood transfusions every day while he was in ICU), spending so much of her day making food for the baby (she has to pump milk every two hours, while I spend hours juicing and making Andrew's homemade formula - neither of them eat solid food), daily visits to the hospital, awaiting test results that could indicate life or death, and the list goes on. The Glenns are doing well, though, and as usual their spirits are up, they always make us laugh, and their family has a cheering effect on everyone they encounter.
Thursday, June 05, 2008
Five Weeks of Treatment Down
GRACE WRITES:
Prior to Andrew's radiation and chemo treatments, he had a full body PET scan. Despite Dr. Yueh expecting the cancer to have spread, we are so grateful that cancer did not show up in any other parts of Andrew's body. As I read each page of the PET scan report, my heart felt full, overflowing with worship and praise towards God, who so clearly is the One who holds all things in His hands.
As you have probably gathered, Andrew decided he wanted to go through with radiation and chemo, despite the misery and toxicity it would cause him. He would have to do radiation for six weeks and chemo - Cetuximab (also called Erbitux) and Taxotere. The radiation is from Monday through Friday and takes about a half hour. It is increasingly like having a horrendous sunburn that blisters and bleeds constantly. Chemo takes a few hours through IV, every Monday.
Week 1 of Treatment
The first week we went back and forth whether it was worth it to continue. We wanted to speak with our radiation doctor, but she had been on vacation for the past few weeks. Another radiation doctor met with us and showed us a study that, according to her, showed that some people who did a second course of radiation with oral cancer managed to survive after 5 years (5 years of survival is considered cure). However, it was only 9% who were still living. Andrew wanted to know if 9% would have still been living if they had done nothing anyway. Obviously they had no studies to give us on that. We felt really reluctant that the benefits of this treatment were really worth the misery Andrew was going to have to undergo. Nonetheless, our resident, Dr. McAfee, convinced us to wait until our doctor, Dr. Lee, returned from her vacation in Italy.
Week 2 of Treatment
On Thursday, Dr. Lee met with us. She said that according to her experience, based on the way in which the cancer had travelled down Andrew's throat coupled with the new information that there was no evidence that the cancer had spread anywhere else in Andrew's body, she believed that the cancer returned so quickly (quick means within a year of last year's treatment) not because the cancer was so aggressive or because Andrew is radiation-resistant, but because there was probably still tumor left behind after Andrew's first surgery last year in Seattle. Andrew had not had a PET scan after surgery last year, because they try to minimize PET scans to every 6 months and Andrew had just had one prior to surgery. Plus, a PET scan usually only picks up tumors larger than a centimeter, so our Seattle doctor last year had assumed it wouldn't pick up anything anyway.
If there was still tumor left behind in 2007, radiation and chemo couldn't have gotten get rid of an actual tumor in this region of the body. It can only get rid of microscopic cancer, which they know to be the case this year.
In English, this means that if it is true that our Seattle doctor had unsuccessfully removed the tumor last year, Andrew's prognosis is not as hopeless. This means that the cancer is not as aggressive as initially thought and not radiation-resistant. Andrew has a 60% chance of getting local control over the cancer. Of course, there is no way to verify if this is the case.
The reason Dr. Lee's hypothesis doesn't sound crazy or unlikely to us is because Andrew had said the very same thing to me a few months ago. He had said, "Grace, I just have this feeling that the doctor super screwed up last year. I've always had this feeling that there was still a tumor at the base of my tongue." Nobody had considered this before because our doctor was supposed to be one of the top 3 surgeons for this in the world. But when I had recently described to Dr. Yueh how the 2007 Seattle surgery involved cutting the tumor out, then another cut, and then a third cut to get a clean margin of no cancerous cells, he blurted, "Then I would say that was a really bad surgery." Then he caught himself and said, "But every surgeon has a bad surgery like that, even the best."
Dr. Lee explained to us that the reason you have to get a clean margin around a tumor the first cut, especially in the tongue, is because the natural reflex of a muscle when it is cut is to immediately retract. Thus, if there was still cancerous tumor left in the tongue, the muscle fibers can retract so deeply into the tongue that the doctor would have had to cut much much more than he should have had he gotten it out the first cut, and then there was no telling how much to cut. It's such a difficult judgment call in the mouth, because even millimeters are high real estate, so the doctor is trying to balance doing as little damage as possible with making sure to get a clean cut around the tumor.
If it is true that the 2007 surgery in Seattle was a complete blunder, we do not feel angry towards our doctor. We know that the Lord had the surgeon's hands in His own Hands that day. It only proves that we can't place our hope in doctors, no matter how great he may be, but God alone. The life of a man is in God's hands, and nothing can thwart His sovereign will. Nothing can mess up where one molecule should be for one millisecond in all of God's creation.
Dr. Lee said that we need to get local control of the cancer, because you don't want to die of oral cancer. It's very awful. Aside from not being able to swallow or talk, it can make breathing very difficult. She said even if it spreads somewhere else, you don't want it to be oral cancer that kills you. Andrew said, "So it would be better to die of liver cancer than oral cancer?"
"Yes," she said. But then she explained that we should not worry that only 9% were living after five years, because they might have died due to cancer in other parts of their body. And those people are usually much older and in general bad health. If we get local control, she said, and there's no evidence that the cancer has spread, then maybe it won't spread somewhere else and we can cure you."
So Dr. Lee had convinced us to stick with radiation. She told us we were thinking too much. She said Andrew should just watch funny cartoons with our kids, as studies show a positive attitude tends to increase the rate of success for the treatments and that we should continue giving him good nutrition, as studies also support its effectiveness. I said what we needed was a trip to Italy.
They also pointed out the acne breaking out on Andrew's face was a sign that the Erbitux was working.
The Thursday we decided to fully commit to these treatments was two days after my end of the rope day that I wrote about. I told Andrew I felt like I really needed a vacation. So I asked him if we could go away over the weekend. He said he didn't want to go far and for only one night, otherwise it's more work than restful. So we went to the newly renovated Hyatt Place in Eden Prairie, the town we live in. We left our house on Friday afternoon with Andrew saying he was feeling well. But when we arrived at Costco to look for a funny DVD series to buy with a gift card some people sent us, Andrew said, "I suddenly feel so tired," just before we left the car. I told him I could go in by myself. He said he really wanted to choose, too, though. So he walked with me into Costco and we sat him down in one of their wheel chairs.
Now, before Andrew had his stomach tube inserted, he used to have a feeding tube that went in through his nose. There was this one day between doctor consultations that we walked down the street outside of the hospital at the University of Minnesota. When Andrew wasn't injecting food into his nose tube, he would wrap it over the top of his ear, and tape it there, like the nurse had taught him, so it hung from his nose to his ear, and wasn't falling down out of his nose to eventually pull out. All the college students kept turning their head to stare at him. Andrew also had a grey hood on on a sunny day, trying to keep shaded, because otherwise the sun prevents a healing scar from disappearing. He was bowing his head forward, because his neck muscles were tight from always having to sleep sitting up in the hospital so that his incisions could heal.
Not one person who passed us pretended not to stare. Neither of us really cared. I actually found it really interesting and began watching them. When I tired of flipping my head as I watched each of them pass, I turned my head towards the windows of the shops. There, I saw the reflection of their turning heads, and past that, the turning, staring heads of the people sitting at the tables next to the window inside the restaurants. I thought Andrew looked practically normal, especially compared to how he looked in the hospital. I laughed. "We should put a chain next to your nose tube and hang earings off of it. Then they'll think it's on purpose."
But as I pushed Andrew in his wheelchair in Costco, even though no one was turning their heads - I guess they knew better than to stare at a person in a wheel chair - I felt bothered. I thought, This isn't cool. "I am going to do everything I possibly can to keep you from ever getting to the point where you will truly need this," I thought out loud.
"I don't want to talk about that right now," Andrew said.
"Oh sorry."
When we arrived at the lobby of the Hyatt, the style was very contemporary, which we love, and it was different than your typical hotel. The check-in counter is in the middle of the room and is shaped like a crescent. On the other side of the desk is a Starbucks coffee bar. So the person who checks you in can also serve you drinks and food. The rest of the lobby has tables, chairs, and couches set up like a giant coffee shop that people like to hang out at.
Upstairs, our room had it's own living room. We vegged on the couch and put in the first season of Saturday Night Live from the 1970s that we had purchased. Within a half-hour of watching that, Andrew fell asleep. He was passed out through all Saturday Night Live plus all of the movie we rented. He slept through all my trips out of the room, including when I went back home to spend a few minutes with my mom before she returned to New Jersey the next morning. He slept through me going down to breakfast the next day. I packed our things up and Andrew finally began to revive. "Wow, I really like this place," Andrew said. "We should come here every week."
Even though Andrew probably only saw the Hyatt when he blinked a couple of times, I think the change of scenery did us both a ton of good. Andrew doesn't get out much. Getting out of the house is going to the hospital for treatment. If he starts to feel better, we go to the park near our house. We're the type that like to go out a lot and in the past that was often to restaurants. Now, restaurants with all its yummy smells of food and crowds of people enjoying chewing what's in their perfect mouths is a place of torture for Andrew. Most of the time in our house, he spends sleeping or dozing in our bedroom. He doesn't like to rest in the living room, because he doesn't like to be in the center of things or the noise of the children. Imagine spending hundreds, more than a thousand, of hours only in your bedroom. It would become the stale cancer bedroom.
"Going to a hotel will give us something to look forward to each week," Andrew said.
I felt so relaxed after vegging at the Hyatt, sleeping in, and not having to wake up with anything to do.
Since the Hyatt is in Eden Prairie, it was so cheap, half of what it would cost 20 minutes away in Minneapolis. Plus, if you sign up for their Rewards, you get your third visit free. That means between the two of us, we get two free visits.
Since Andrew was passed out all of Friday and Saturday, I assumed it was because of the chemo. I thought, How can it be this bad after only two weeks? Andrew didn't sleep this much until the last dose of chemo last year. How will we manage if it's only going to get worse than this? How can it possibly get worse? But the next morning, Sunday, when Andrew woke up, he said, "I'm feeling better now. Let's go to church."
He later explained to me that it wasn't because of the chemo that he was so tired. It was because he was fighting off a cold. So by Monday, he was healed and okay to do chemo again. This is a huge praise that he healed so quickly, because usually doctors are afraid with a compromised immune system that it will turn into pneumonia. Last year, when Andrew got a cold, chemo was postponed a week. Instead, this year, Andrew recovered more quickly than a normal person without cancer.
Each week we go to the Hyatt Place, I feel a little more rehabilitated after the stress of Andrew's surgery and the subsequent weeks. But with each week that I feel more and more human, Andrew feels less and less human. While he gets more miserable, I must feel better, lest I end up collapsing on the bed beside him and he starts asking me how he can help me.
Week 3 of Treatment
This week was a week from heaven for me. We no longer had to consult with doctors about decisions, so now my mother-in-law was taking Andrew to radiation, so I could be with the kids. It had been two months that I had been away from them most of every day between being at the hospital and all our doctor consultations.
I was home with the kids now and the sun was calling us outside. And I can never resist its call. The leaves had finally blossomed on the trees and the path to the park had become woods that could have been miles thick, it was so full. The trail leads to a pond and we watched a family of 6 turtles sunning on a log. When we took a step off the path onto the grass, each of the turtles plopped into the water, except for the two largest ones. I said they were the grandma and grandpa and knew better that People never go into the pond and won't hurt them. The turtles kept clicking and clicking. We said it was the little ones saying, "Come on Grandma! Come on Grandpa! Before the People get you." But as we passed, Grandma and Grandpa Turtle said, "You see. I told you. We've been here years. We know. The People won't bother us. Plus my limbs are aching too much to keep jumping in and out of the water."
Now that the grass was growing and everything was flowering, often we never made it past the pond and the trail that leads to the playground, because we got too caught up picking dandelions and watching the different birds that we had never seen in the previous states we had lived in. There was a small black bird with fire engine, red shoulders. There were birds that were so little and moved so quickly on the ground, I almost wondered if I was seeing baby chipmunks. And then it flew off. We even saw a big...well, I don't know what it was...it was brown and big like a porcupine but without the sharp pines, and it hung off a tree with it's tail trying to get at something.
Week 4 of Treatment
Each week is a rollercoaster. The first two weeks, Andrew was pretty miserable. Then, by the third week, it was as if his body got used to the chemo and tolerated it better. The pattern became that he was administered chemo on Monday, it kicked in Tuesday night, he slept constantly from then until Friday. Then Friday or Saturday morning, he'd suddenly arrive in the kitchen, feed himself, and say, "I'm feeling better. I think I'll get some exercise and go for a bike ride." I stand there gaping and praising God, surprised that each week a day like that still arrives.
It has continued like this with each week getting worse, the length of his bad days increasing, and his good days being less energetic than the previous week. On the bad days, I continually go back and forth between Andrew and the kids. I often have to drop the kids mid-sentence on grandma if Andrew suddenly needs me.
During the kids' naps, when I normally might get a little break and catch up on other things, instead it's my opportunity to return again to Andrew. There was one day last week where from the moment we woke up until 11:30 at night, I literally did not have one second by myself. When I was putting the kids to bed, I was like, "A.J., I don't know, you'll have to figure out how to get your sleeper on yourself. I'm just so exhausted." After I finally put the kids to bed, I went to my room to collapse on my own bed early. But then I realized, it was time to feed Andrew again. I must say, though, that God's grace has been sufficent. The Lord provided a second wind. When I finished injecting his anti-nausea drugs and then afterwards his meal, I then sat with him the next 45 minutes as he vomitted his anti-nausea meds and food.
Week 5 of Treatment
Andrew had began throwing up a few times on his worst days around week 4. In Week 5 the throwing up increased, despite that he is on three anti-nausea drugs now, while he had started out only on one, Zofran. His saliva from day one has gotten thicker and thicker and more viscous, so that he is constantly spitting, unable to swallow his own saliva. And now the spit is bloody from all the burns the radiation is causing in his mouth.
He often wakes up throughout the night, and I often wake up with him. Many nights this week one or the other of us has been unable to return to sleep for a few hours.
On Monday, before the chemotherapy misery had kicked in again and I was walking with Andrew and the kids, a neighbor down the street introduced herself to me. She said, "I always see lots of cars outside your house."
Andrew was standing beside me. Man, all of you who know him, if you saw him now, would think he looks awful. Last year cancer was a trip to the park compared to this year. He's boney, has acne, his neck still tight so that his head bows and his shoulders raised, his face redish tan, and he's always hacking spit into paper cups he carries around with him.
I wonder if he looks older. When Andrew first changed out of his hospital gown into a t-shirt at the end of his hospital stay in April, the nurse said, "There you go. Takes 10 years off just by changing your clothes." It didn't occur to me that it was possible for him to look outside of his twenties.
I wonder what he looks like to strangers who have no memory of how handsome he is, and if he just looks like a tan, skinny guy with bad posture. They are probably confused, and wonder if that's a tired, in-pain look that might be evidence that something is strange. I replied to our neighbor, "My husband is going through cancer treatments right now. So people from our church are always coming over to help us out."
For one thing, every Tuesday evening our living room fills with people who come to pray for Andrew. And then there's the team of four who clean our house every other week. And then there are the times our small group met at our house so that we didn't have to go to them. Also, every Monday night people from Motorola visit Andrew. They all live in Eden Prairie, because up until last summer their office had been located in town. Andrew hadn't even transferred from the Seattle project yet (he had been working on it remotely from here) to the Minnesota group, so he had hardly spent time with them before this happened, yet they are still so kind to care. Andrew loves that they visit him. So there's probably one to three times a week it looks like we're having a party at our house.
Plus, they must wonder why the Grout Doctor van always shows up whenever our lawn is being mowed (Allen mows our lawn and he's the Grout Doctor). And if Andrew doesn't feel well enough to make it to prayer meeting at church on Wednesday nights, guys come to our house to pray with him. And then there are people that sign up for his visitation slots to encourage him.
I am really grateful for all the people that visit Andrew and try to encourage him. Splitting my brain between caring for Andrew and taking care of two toddlers who were starved of my attention for two months and still are starved of their father, I usually don't even know how to encourage Andrew. When Andrew says to me, "Grace, I don't know if I'm going to make it through these treatments," for once, I am at a loss for words. I don't feel like I'm outside the situation, seeing everything so clearly and knowing what to do. I'm right there next to him, perplexed.
Andrew says that every word he says is a sacrifice, so I try not to ask too many questions. His voice is hoarse and he can't speak very loudly. The doctors had said, though, that this should be temporary and vocal chords usually do well recovering from radiation. I suppose it's not just his vocal chords but the burns in his mouth that make it diffcult to talk. On our Tuesday prayer nights, I get my detailed update along with everyone else. He makes a special effort that night. Andrew usually only says things to me if he needs something or he feels something strongly. For the latter, this means it is usually one of two things that he says: "Grace, I don't know how I'm going to make it through this," or "I'm feeling good today. I'm going to get some exercise and go for a bike ride."
People ask me what it means that he feels sick. I say, "I'm not really sure." I know it means he's amazingly tired and nauseated. I don't know if it's more complicated.
The distress he feels in his heart is a mystery to me. This is what is hardest for me. And now that it's been months since I've had a real conversation with my husband, one that he contributes to, this feeling has sneaked up on me. Have I always felt like Andrew is a complete mystery to me, the deepest part of who he is untouchable, so far from me as if in a black abyss? I have always wanted to know what it's like behind Andrew's eyes, but I am not even a man and never will be. Do colors look brighter or paler behind his eyes? Does the wind feel colder or sharper against his skin than against mine? I will never stand behind his eyes, but I will always wish I could.
What is God teaching him? Will he even remember what his thoughts were when he has energy and voice enough to express them? Sometimes I look at him and I think I see the faint glimmers of angelicness flickering from one side of his face and body like an old T.V. who's reception fuzzes then sharpens then fuzzes again. Is God completely transforming him into a different, heavenly creature without me even knowing? Will he still be able to relate to an earthly creature like me once this is over? I think, I can't lose my husband, because he's still a mystery to me. I mentioned this to Andrew. He squeezed my hand silently. I felt so loved by him. And that made me happy.
Prayer Requests
We continue to be so grateful for all your prayers, encouragement, and help.
Please continue to bring before the Lord our PLEES:
PRESERVE Andrew from the ill effects of these treatments as well as heal Andrew completely. That he would be healthier and better than even before cancer.
LEARN from these trials what the Lord wants all of us to learn from them.
Encouragement and the
Endurance to complete these treatments.
Strength for me to be able to take care of, help, and encourage Andrew, as well as be a mom to the kids. I love them so much.
Prior to Andrew's radiation and chemo treatments, he had a full body PET scan. Despite Dr. Yueh expecting the cancer to have spread, we are so grateful that cancer did not show up in any other parts of Andrew's body. As I read each page of the PET scan report, my heart felt full, overflowing with worship and praise towards God, who so clearly is the One who holds all things in His hands.
As you have probably gathered, Andrew decided he wanted to go through with radiation and chemo, despite the misery and toxicity it would cause him. He would have to do radiation for six weeks and chemo - Cetuximab (also called Erbitux) and Taxotere. The radiation is from Monday through Friday and takes about a half hour. It is increasingly like having a horrendous sunburn that blisters and bleeds constantly. Chemo takes a few hours through IV, every Monday.
Week 1 of Treatment
The first week we went back and forth whether it was worth it to continue. We wanted to speak with our radiation doctor, but she had been on vacation for the past few weeks. Another radiation doctor met with us and showed us a study that, according to her, showed that some people who did a second course of radiation with oral cancer managed to survive after 5 years (5 years of survival is considered cure). However, it was only 9% who were still living. Andrew wanted to know if 9% would have still been living if they had done nothing anyway. Obviously they had no studies to give us on that. We felt really reluctant that the benefits of this treatment were really worth the misery Andrew was going to have to undergo. Nonetheless, our resident, Dr. McAfee, convinced us to wait until our doctor, Dr. Lee, returned from her vacation in Italy.
Week 2 of Treatment
On Thursday, Dr. Lee met with us. She said that according to her experience, based on the way in which the cancer had travelled down Andrew's throat coupled with the new information that there was no evidence that the cancer had spread anywhere else in Andrew's body, she believed that the cancer returned so quickly (quick means within a year of last year's treatment) not because the cancer was so aggressive or because Andrew is radiation-resistant, but because there was probably still tumor left behind after Andrew's first surgery last year in Seattle. Andrew had not had a PET scan after surgery last year, because they try to minimize PET scans to every 6 months and Andrew had just had one prior to surgery. Plus, a PET scan usually only picks up tumors larger than a centimeter, so our Seattle doctor last year had assumed it wouldn't pick up anything anyway.
If there was still tumor left behind in 2007, radiation and chemo couldn't have gotten get rid of an actual tumor in this region of the body. It can only get rid of microscopic cancer, which they know to be the case this year.
In English, this means that if it is true that our Seattle doctor had unsuccessfully removed the tumor last year, Andrew's prognosis is not as hopeless. This means that the cancer is not as aggressive as initially thought and not radiation-resistant. Andrew has a 60% chance of getting local control over the cancer. Of course, there is no way to verify if this is the case.
The reason Dr. Lee's hypothesis doesn't sound crazy or unlikely to us is because Andrew had said the very same thing to me a few months ago. He had said, "Grace, I just have this feeling that the doctor super screwed up last year. I've always had this feeling that there was still a tumor at the base of my tongue." Nobody had considered this before because our doctor was supposed to be one of the top 3 surgeons for this in the world. But when I had recently described to Dr. Yueh how the 2007 Seattle surgery involved cutting the tumor out, then another cut, and then a third cut to get a clean margin of no cancerous cells, he blurted, "Then I would say that was a really bad surgery." Then he caught himself and said, "But every surgeon has a bad surgery like that, even the best."
Dr. Lee explained to us that the reason you have to get a clean margin around a tumor the first cut, especially in the tongue, is because the natural reflex of a muscle when it is cut is to immediately retract. Thus, if there was still cancerous tumor left in the tongue, the muscle fibers can retract so deeply into the tongue that the doctor would have had to cut much much more than he should have had he gotten it out the first cut, and then there was no telling how much to cut. It's such a difficult judgment call in the mouth, because even millimeters are high real estate, so the doctor is trying to balance doing as little damage as possible with making sure to get a clean cut around the tumor.
If it is true that the 2007 surgery in Seattle was a complete blunder, we do not feel angry towards our doctor. We know that the Lord had the surgeon's hands in His own Hands that day. It only proves that we can't place our hope in doctors, no matter how great he may be, but God alone. The life of a man is in God's hands, and nothing can thwart His sovereign will. Nothing can mess up where one molecule should be for one millisecond in all of God's creation.
Dr. Lee said that we need to get local control of the cancer, because you don't want to die of oral cancer. It's very awful. Aside from not being able to swallow or talk, it can make breathing very difficult. She said even if it spreads somewhere else, you don't want it to be oral cancer that kills you. Andrew said, "So it would be better to die of liver cancer than oral cancer?"
"Yes," she said. But then she explained that we should not worry that only 9% were living after five years, because they might have died due to cancer in other parts of their body. And those people are usually much older and in general bad health. If we get local control, she said, and there's no evidence that the cancer has spread, then maybe it won't spread somewhere else and we can cure you."
So Dr. Lee had convinced us to stick with radiation. She told us we were thinking too much. She said Andrew should just watch funny cartoons with our kids, as studies show a positive attitude tends to increase the rate of success for the treatments and that we should continue giving him good nutrition, as studies also support its effectiveness. I said what we needed was a trip to Italy.
They also pointed out the acne breaking out on Andrew's face was a sign that the Erbitux was working.
The Thursday we decided to fully commit to these treatments was two days after my end of the rope day that I wrote about. I told Andrew I felt like I really needed a vacation. So I asked him if we could go away over the weekend. He said he didn't want to go far and for only one night, otherwise it's more work than restful. So we went to the newly renovated Hyatt Place in Eden Prairie, the town we live in. We left our house on Friday afternoon with Andrew saying he was feeling well. But when we arrived at Costco to look for a funny DVD series to buy with a gift card some people sent us, Andrew said, "I suddenly feel so tired," just before we left the car. I told him I could go in by myself. He said he really wanted to choose, too, though. So he walked with me into Costco and we sat him down in one of their wheel chairs.
Now, before Andrew had his stomach tube inserted, he used to have a feeding tube that went in through his nose. There was this one day between doctor consultations that we walked down the street outside of the hospital at the University of Minnesota. When Andrew wasn't injecting food into his nose tube, he would wrap it over the top of his ear, and tape it there, like the nurse had taught him, so it hung from his nose to his ear, and wasn't falling down out of his nose to eventually pull out. All the college students kept turning their head to stare at him. Andrew also had a grey hood on on a sunny day, trying to keep shaded, because otherwise the sun prevents a healing scar from disappearing. He was bowing his head forward, because his neck muscles were tight from always having to sleep sitting up in the hospital so that his incisions could heal.
Not one person who passed us pretended not to stare. Neither of us really cared. I actually found it really interesting and began watching them. When I tired of flipping my head as I watched each of them pass, I turned my head towards the windows of the shops. There, I saw the reflection of their turning heads, and past that, the turning, staring heads of the people sitting at the tables next to the window inside the restaurants. I thought Andrew looked practically normal, especially compared to how he looked in the hospital. I laughed. "We should put a chain next to your nose tube and hang earings off of it. Then they'll think it's on purpose."
But as I pushed Andrew in his wheelchair in Costco, even though no one was turning their heads - I guess they knew better than to stare at a person in a wheel chair - I felt bothered. I thought, This isn't cool. "I am going to do everything I possibly can to keep you from ever getting to the point where you will truly need this," I thought out loud.
"I don't want to talk about that right now," Andrew said.
"Oh sorry."
When we arrived at the lobby of the Hyatt, the style was very contemporary, which we love, and it was different than your typical hotel. The check-in counter is in the middle of the room and is shaped like a crescent. On the other side of the desk is a Starbucks coffee bar. So the person who checks you in can also serve you drinks and food. The rest of the lobby has tables, chairs, and couches set up like a giant coffee shop that people like to hang out at.
Upstairs, our room had it's own living room. We vegged on the couch and put in the first season of Saturday Night Live from the 1970s that we had purchased. Within a half-hour of watching that, Andrew fell asleep. He was passed out through all Saturday Night Live plus all of the movie we rented. He slept through all my trips out of the room, including when I went back home to spend a few minutes with my mom before she returned to New Jersey the next morning. He slept through me going down to breakfast the next day. I packed our things up and Andrew finally began to revive. "Wow, I really like this place," Andrew said. "We should come here every week."
Even though Andrew probably only saw the Hyatt when he blinked a couple of times, I think the change of scenery did us both a ton of good. Andrew doesn't get out much. Getting out of the house is going to the hospital for treatment. If he starts to feel better, we go to the park near our house. We're the type that like to go out a lot and in the past that was often to restaurants. Now, restaurants with all its yummy smells of food and crowds of people enjoying chewing what's in their perfect mouths is a place of torture for Andrew. Most of the time in our house, he spends sleeping or dozing in our bedroom. He doesn't like to rest in the living room, because he doesn't like to be in the center of things or the noise of the children. Imagine spending hundreds, more than a thousand, of hours only in your bedroom. It would become the stale cancer bedroom.
"Going to a hotel will give us something to look forward to each week," Andrew said.
I felt so relaxed after vegging at the Hyatt, sleeping in, and not having to wake up with anything to do.
Since the Hyatt is in Eden Prairie, it was so cheap, half of what it would cost 20 minutes away in Minneapolis. Plus, if you sign up for their Rewards, you get your third visit free. That means between the two of us, we get two free visits.
Since Andrew was passed out all of Friday and Saturday, I assumed it was because of the chemo. I thought, How can it be this bad after only two weeks? Andrew didn't sleep this much until the last dose of chemo last year. How will we manage if it's only going to get worse than this? How can it possibly get worse? But the next morning, Sunday, when Andrew woke up, he said, "I'm feeling better now. Let's go to church."
He later explained to me that it wasn't because of the chemo that he was so tired. It was because he was fighting off a cold. So by Monday, he was healed and okay to do chemo again. This is a huge praise that he healed so quickly, because usually doctors are afraid with a compromised immune system that it will turn into pneumonia. Last year, when Andrew got a cold, chemo was postponed a week. Instead, this year, Andrew recovered more quickly than a normal person without cancer.
Each week we go to the Hyatt Place, I feel a little more rehabilitated after the stress of Andrew's surgery and the subsequent weeks. But with each week that I feel more and more human, Andrew feels less and less human. While he gets more miserable, I must feel better, lest I end up collapsing on the bed beside him and he starts asking me how he can help me.
Week 3 of Treatment
This week was a week from heaven for me. We no longer had to consult with doctors about decisions, so now my mother-in-law was taking Andrew to radiation, so I could be with the kids. It had been two months that I had been away from them most of every day between being at the hospital and all our doctor consultations.
I was home with the kids now and the sun was calling us outside. And I can never resist its call. The leaves had finally blossomed on the trees and the path to the park had become woods that could have been miles thick, it was so full. The trail leads to a pond and we watched a family of 6 turtles sunning on a log. When we took a step off the path onto the grass, each of the turtles plopped into the water, except for the two largest ones. I said they were the grandma and grandpa and knew better that People never go into the pond and won't hurt them. The turtles kept clicking and clicking. We said it was the little ones saying, "Come on Grandma! Come on Grandpa! Before the People get you." But as we passed, Grandma and Grandpa Turtle said, "You see. I told you. We've been here years. We know. The People won't bother us. Plus my limbs are aching too much to keep jumping in and out of the water."
Now that the grass was growing and everything was flowering, often we never made it past the pond and the trail that leads to the playground, because we got too caught up picking dandelions and watching the different birds that we had never seen in the previous states we had lived in. There was a small black bird with fire engine, red shoulders. There were birds that were so little and moved so quickly on the ground, I almost wondered if I was seeing baby chipmunks. And then it flew off. We even saw a big...well, I don't know what it was...it was brown and big like a porcupine but without the sharp pines, and it hung off a tree with it's tail trying to get at something.
Week 4 of Treatment
Each week is a rollercoaster. The first two weeks, Andrew was pretty miserable. Then, by the third week, it was as if his body got used to the chemo and tolerated it better. The pattern became that he was administered chemo on Monday, it kicked in Tuesday night, he slept constantly from then until Friday. Then Friday or Saturday morning, he'd suddenly arrive in the kitchen, feed himself, and say, "I'm feeling better. I think I'll get some exercise and go for a bike ride." I stand there gaping and praising God, surprised that each week a day like that still arrives.
It has continued like this with each week getting worse, the length of his bad days increasing, and his good days being less energetic than the previous week. On the bad days, I continually go back and forth between Andrew and the kids. I often have to drop the kids mid-sentence on grandma if Andrew suddenly needs me.
During the kids' naps, when I normally might get a little break and catch up on other things, instead it's my opportunity to return again to Andrew. There was one day last week where from the moment we woke up until 11:30 at night, I literally did not have one second by myself. When I was putting the kids to bed, I was like, "A.J., I don't know, you'll have to figure out how to get your sleeper on yourself. I'm just so exhausted." After I finally put the kids to bed, I went to my room to collapse on my own bed early. But then I realized, it was time to feed Andrew again. I must say, though, that God's grace has been sufficent. The Lord provided a second wind. When I finished injecting his anti-nausea drugs and then afterwards his meal, I then sat with him the next 45 minutes as he vomitted his anti-nausea meds and food.
Week 5 of Treatment
Andrew had began throwing up a few times on his worst days around week 4. In Week 5 the throwing up increased, despite that he is on three anti-nausea drugs now, while he had started out only on one, Zofran. His saliva from day one has gotten thicker and thicker and more viscous, so that he is constantly spitting, unable to swallow his own saliva. And now the spit is bloody from all the burns the radiation is causing in his mouth.
He often wakes up throughout the night, and I often wake up with him. Many nights this week one or the other of us has been unable to return to sleep for a few hours.
On Monday, before the chemotherapy misery had kicked in again and I was walking with Andrew and the kids, a neighbor down the street introduced herself to me. She said, "I always see lots of cars outside your house."
Andrew was standing beside me. Man, all of you who know him, if you saw him now, would think he looks awful. Last year cancer was a trip to the park compared to this year. He's boney, has acne, his neck still tight so that his head bows and his shoulders raised, his face redish tan, and he's always hacking spit into paper cups he carries around with him.
I wonder if he looks older. When Andrew first changed out of his hospital gown into a t-shirt at the end of his hospital stay in April, the nurse said, "There you go. Takes 10 years off just by changing your clothes." It didn't occur to me that it was possible for him to look outside of his twenties.
I wonder what he looks like to strangers who have no memory of how handsome he is, and if he just looks like a tan, skinny guy with bad posture. They are probably confused, and wonder if that's a tired, in-pain look that might be evidence that something is strange. I replied to our neighbor, "My husband is going through cancer treatments right now. So people from our church are always coming over to help us out."
For one thing, every Tuesday evening our living room fills with people who come to pray for Andrew. And then there's the team of four who clean our house every other week. And then there are the times our small group met at our house so that we didn't have to go to them. Also, every Monday night people from Motorola visit Andrew. They all live in Eden Prairie, because up until last summer their office had been located in town. Andrew hadn't even transferred from the Seattle project yet (he had been working on it remotely from here) to the Minnesota group, so he had hardly spent time with them before this happened, yet they are still so kind to care. Andrew loves that they visit him. So there's probably one to three times a week it looks like we're having a party at our house.
Plus, they must wonder why the Grout Doctor van always shows up whenever our lawn is being mowed (Allen mows our lawn and he's the Grout Doctor). And if Andrew doesn't feel well enough to make it to prayer meeting at church on Wednesday nights, guys come to our house to pray with him. And then there are people that sign up for his visitation slots to encourage him.
I am really grateful for all the people that visit Andrew and try to encourage him. Splitting my brain between caring for Andrew and taking care of two toddlers who were starved of my attention for two months and still are starved of their father, I usually don't even know how to encourage Andrew. When Andrew says to me, "Grace, I don't know if I'm going to make it through these treatments," for once, I am at a loss for words. I don't feel like I'm outside the situation, seeing everything so clearly and knowing what to do. I'm right there next to him, perplexed.
Andrew says that every word he says is a sacrifice, so I try not to ask too many questions. His voice is hoarse and he can't speak very loudly. The doctors had said, though, that this should be temporary and vocal chords usually do well recovering from radiation. I suppose it's not just his vocal chords but the burns in his mouth that make it diffcult to talk. On our Tuesday prayer nights, I get my detailed update along with everyone else. He makes a special effort that night. Andrew usually only says things to me if he needs something or he feels something strongly. For the latter, this means it is usually one of two things that he says: "Grace, I don't know how I'm going to make it through this," or "I'm feeling good today. I'm going to get some exercise and go for a bike ride."
People ask me what it means that he feels sick. I say, "I'm not really sure." I know it means he's amazingly tired and nauseated. I don't know if it's more complicated.
The distress he feels in his heart is a mystery to me. This is what is hardest for me. And now that it's been months since I've had a real conversation with my husband, one that he contributes to, this feeling has sneaked up on me. Have I always felt like Andrew is a complete mystery to me, the deepest part of who he is untouchable, so far from me as if in a black abyss? I have always wanted to know what it's like behind Andrew's eyes, but I am not even a man and never will be. Do colors look brighter or paler behind his eyes? Does the wind feel colder or sharper against his skin than against mine? I will never stand behind his eyes, but I will always wish I could.
What is God teaching him? Will he even remember what his thoughts were when he has energy and voice enough to express them? Sometimes I look at him and I think I see the faint glimmers of angelicness flickering from one side of his face and body like an old T.V. who's reception fuzzes then sharpens then fuzzes again. Is God completely transforming him into a different, heavenly creature without me even knowing? Will he still be able to relate to an earthly creature like me once this is over? I think, I can't lose my husband, because he's still a mystery to me. I mentioned this to Andrew. He squeezed my hand silently. I felt so loved by him. And that made me happy.
We have just completed the fifth week. We had thought the treatments were only 6 weeks long, but it's actually an additional half week. So instead of finishing this Friday, the 13th, he'll be finishing Thursday, the 19th. A total of 33 radiation treatments and 7 chemo treatments. Then the effects are supposed to get worse for two weeks after the treatments end.
Still Surprises
Despite all the misery Andrew is enduring, there are still surprising praises. He still can swallow food when it looks so appetizing that he can't resist. The other day he swallowed a spoonful of pasta. Today he had a spoonful of brown rice. He says it's not really eating, since he uses a lot of water flushes and lets it slide down his throat by tilting his head up, but I tell him that no one expected him to be able to consume anything through his mouth, especially this late into his treatments.
And up until a week ago, he was able to taste. The radiation is supposed to only temporarily destroy your ability to taste.
Andrew also drinks one cup of ice water with a hint of apple juice every day. He coughs, gags, and spits some of it out, but most of it eventually makes it down.
Dr. Yueh had told us that Andrew would completely lose his ability to swallow from the radiation. If Andrew is able to do this much with only nine of 33 treatments left, I feel that his speech therapy exercises that by God's grace he still does each day will only cause him to improve once this is all over. Besides, most of the people the doctors observe are three times Andrew's age. I imagine he'll have have a lot more energy, determination, and time to rehabilitate.
Also, they take Andrew's blood every week right before they administer the chemo. His blood counts, vitamins, etc. are doing really well. The few things that are a little low, is usually only by a point or two. When they handed me his most recent tests, I thought, How could he be doing so well? As I silently continued to process, suddenly, my heart gushed with exultation. My thoughts broke out into worship and praise to God for His grace on Andrew's body.Prayer Requests
We continue to be so grateful for all your prayers, encouragement, and help.
Please continue to bring before the Lord our PLEES:
PRESERVE Andrew from the ill effects of these treatments as well as heal Andrew completely. That he would be healthier and better than even before cancer.
LEARN from these trials what the Lord wants all of us to learn from them.
Encouragement and the
Endurance to complete these treatments.
Strength for me to be able to take care of, help, and encourage Andrew, as well as be a mom to the kids. I love them so much.
Would You Like to Encourage Andrew?
Hi everyone, you guys have been such an encouragement to us. We are so grateful that you care enough to read our blogs. While many of you express wishing you could do something but don't know what you could do, please know that even saying that is a blessing to us. So even if you think you're not doing anything, I think your expressions of love and concern either through emails, comments, cards, verbally encouraging us through your words or physically helping us, each contribute to Andrew's health. Studies have actually shown that a positive attitude makes a big difference in one's ability to survive cancer. Your expressions of love and concern often protect or help fish Andrew out of dark feelings, and thus are helping Andrew in his fight against cancer.
I would really like to encourage Andrew, as sometimes he feels so low in the thick of these treatments right now. I know that he loves to find out who is reading our blogs as well as read about memories (as do I) with people. We keep hearing about people who are reading our blogs, but who have not left a comment. So here is another request for comments:
Please leave your:
* First and last name (or at least initial)
* What state you live in
* How you found our blog
* a memory with us (if applicable)
- Please leave a comment if you have no relation at all to us and have never met us before. We love to hear when random people are reading are blogs, especially if it's in a different state or country.
- we are particularly wondering why few pre-college people have left a comment, so if you knew us in high school or as kids or are related to us in any way at all (mom, you do still read this, right?), please leave a comment and memory! Andrew will love this. And me too.
- please leave a comment if you are only acquainted with us
- please leave a comment if you are shy person
- please leave a comment if you never have before
- please leave a comment if you already have left a comment but just feel like writing about memories
- have I left anyone out? If I have, please leave a comment
We check our comments entirely too much throughout the day.
I would really like to encourage Andrew, as sometimes he feels so low in the thick of these treatments right now. I know that he loves to find out who is reading our blogs as well as read about memories (as do I) with people. We keep hearing about people who are reading our blogs, but who have not left a comment. So here is another request for comments:
Please leave your:
* First and last name (or at least initial)
* What state you live in
* How you found our blog
* a memory with us (if applicable)
- Please leave a comment if you have no relation at all to us and have never met us before. We love to hear when random people are reading are blogs, especially if it's in a different state or country.
- we are particularly wondering why few pre-college people have left a comment, so if you knew us in high school or as kids or are related to us in any way at all (mom, you do still read this, right?), please leave a comment and memory! Andrew will love this. And me too.
- please leave a comment if you are only acquainted with us
- please leave a comment if you are shy person
- please leave a comment if you never have before
- please leave a comment if you already have left a comment but just feel like writing about memories
- have I left anyone out? If I have, please leave a comment
We check our comments entirely too much throughout the day.
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