Fri 10/26/07
We met for an evaluation with a new therapist whose company's in-home treatments integrate physical, occupational, and speech components within one organization and focuses on each patient's goals for rehabilitation. This method makes sense to me and sounds promising.
Sun 10/28/07
Susan has been stronger, more alert, and less fatigued since she finished radiation and chemotherapy. Today we went to church at 9am, and had a family birthday party for Lexie's 18th and Austin's 16th at noon. At 4pm, Susan joined me at practice for our Holiday Chorale at church as I joined with the choir after missing their earlier rehearsals. She watched and listened as we sang, and got absolutely smothered with love afterwards. It was a great day.
Mon 10/29/07
Tomorrow we visit UCLA for a follow-up visit with Susan's neurosurgeon and Wednesday with her neuro-oncologist along with an MRI. Meanwhile, we rest in peace.
I made a sincere apology to Susan tonight after dinner. Adam was invited for dinner at the Johnson's, but came home later and joined us at the table during our meal. When we finished, Susan reminded Adam that he needed to empty the dishwasher like I had asked him to do earlier. As he was leaving for the kitchen, I realized we might miss an opportunity and said to him, "Actually, why don't you sit down for a few more minutes so we can read our devotional?" Susan was insulted that I had spoken to Adam directly and not to her, and told me that everyone speaks as though she's not there – but she can hear everything and, basically said she's tired of being ignored when she's right in the room. While the boys looked on with big eyes, I apologized right away and said I understand, that it would have been better to have responded to her, and I didn't mean to insult her. Then we got on with our devotional.
I apologized again later before Susan went to sleep, saying there was a time when she wasn't able to understand what was going on very well, and so the family adjusted for it by talking among ourselves even when she was in the room. She just wasn't able to participate. so we had adapted around her. For months as we've visited medical personnel, I've had to tell her story for her since either she had no original memory of what happened or she'd forget what she'd learned about it. I've been careful to acknowledge her as much as possible, often recounting events to her for the doctor to hear instead of vice versa. Anyway, just as I realized recently that now it's better for Susan to make her own sandwich with my help than to have me make it for her, tonight she let me know it's time to unwind our adaptation of speaking over and around her. Later as we talked, she said she hoped she didn't challenge me to strongly in front of the kids – I said I was the one apologizing right now, and she was right in what she said. Then we affirmed our care for each other and prayed together before bed. All told, Susan has gotten just a little more sassy again lately, and I'm glad about it. There's a reason Tinkerbell is her favorite Disney character.
Tonight's reading in Streams in the Desert from Ephesians 2:6 relates how we are seated with Christ in the heavenly realms, and it struck deeply with me. If God's people are seated with Christ (and we are), God intends for us to stay there – always – not just on Sundays, and not just when we migrate back around for greater intimacy with Him. Too often, we give in to worry, anxiety, and fear over our circumstances. If the eye of a hurricane is so peaceful as to allow a child to sleep in it, there's a place of peace and rest in the Lord right next to life's swirling winds. I thought of the phrase "rest in peace," and it took on new meaning tonight. Those words, most closely associated with death, are actually words of life for us. While Susan and I don't want to be without each other, we're not afraid of death, so we will rest in peace before we die. Right now.
Tue 10/30/07
We met with Susan's neurosurgeon Linda Liau today for a post-op exam at UCLA. Dr Liau said Susan's incision site has healed well after two resections and is pleased with her progress in the two months since surgery, commenting on her obvious improvements and greater alertness since our last visit. She said the worst of Susan's treatments is over – the dual radiation & chemo is usually the most draining part of treatment. Actually, it wasn't any worse than any of her other complications, for which we're thankful. Dr Liau also told us to plan on monthly 5-day chemo treatments with periodic MRIs for the next year or so in hopes of keeping her tumor at bay.
Regarding the brain cancer vaccine Dr Liau is working on, she's confident Susan will be eligible for the vaccine in one form or another in the coming years. Perhaps the current version would be FDA-approved, or once she is breast-cancer free for three years in 2009, she would be eligible for one of the improved versions in a clinical trial.
We will be lifting Dr Liau in prayer, who had recent surgery herself for breast cancer. It was her mother's own breast cancer and metastatic brain cancer that led to her death and inspired Dr Liau to her work as a malignant tumor brain surgeon. She said they discovered it early, and like Susan, she won't need radiation or chemotherapy, so we were encouraged for her. We pray for her complete healing for a long and joyful life.
Wed 10/31/07
We had a truly encouraging MRI result at today's visit to UCLA and Susan's neuro-oncologist. One bit of tumor across the midline that was inaccessible to surgery is gone, and another area nearby appears not to have grown at all! We thank God who is almighty and good, and we're grateful to everyone who has been praying.
Susan is back on temodar chemotherapy, a new routine that will be five days each month for at least the next year or two. Her dose this time is a little more than twice as before, and will be increased again if she tolerates the higher dosage. She'll also have monthly blood work and bi-monthly MRIs as Dr Nghiemphu will monitor her progress.
Wednesday, October 31, 2007
Wednesday, October 24, 2007
Stable and improving
Tue 10/02/07
Aside from her brain swelling episode a couple of weeks ago, Susan's status has remained stable since her most recent hospital discharge in early September. After one week on oral chemotherapy, the most consistent side effect has been periodic joint and muscle pain. Potential nausea is abated with zofran, a med she takes an hour before her nightly chemo pills. We're thankful for these relatively few complications. She's had a couple of speech therapy sessions along with daily homework – cognitive exercises to add to her physical therapy routine. I'm adjusting to Susan's early-bird schedule. She's often down for the night by 8:30 or 9pm, and lately has been awake, alert and ready for whatever at 4:30 or 5am. If she's up, then I need to be up, so I need to get to sleep early as well, or I'll be zonked the next day. Our days are busy with at-home therapies, radiation treatments, doctor visits, and kids' activities.
I'm getting back to the office more often for a span of hours to keep the irons hot, though I'm still officially on leave. We accomplish it all with the help of our amazing friends and family who attend Susan during the day, take her to radiation and lab visits; provide us with meals, and whisk our sons to and from church. We are rich with friends – gazillionaires.
Two things have remained persistent since our lives were so drastically altered in late June – the gravity of Susan's illness and the faithfulness of God. I've mentioned the disappointment that emerges following a missed opportunity for divine healing. We had the build-up before surgery filled with faith, prayer, and a pregnant opportunity for a God-glorifying miracle. When it didn't happen, we felt the let down at the collision of our will and God's, and the grief of accepting that though He could have healed just then, he did not. Life is a mystery. In the fog of the unknown, we celebrate that God doesn't change: His love is overwhelming, His favor is upon us, His power is complete, His will perfect. While the medical outlook for grade IV glioblastoma offers limited life expectancy, God will heal her if He chooses. Meanwhile, we continually experience the miracle of love given by friends and family who share all manner of resources with us. This week, another set of Arco gift cards arrived to fill our gas tanks for the better part of a month. The anonymous giver just wants us to know we're loved and prayed for – thank you, Lord.
Wed 10/03/07
We met today with a rep from the CA State Dept of Rehabilitation who was referred to us by the So Cal College of Optometry. The DOR provides equipment and reimbursement for low-vision therapy patients like Susan who are disabled and making effort to return to work eventually. We are thankful for yet another valuable resource.
Fri 10/05/07
Our friend Alecia discovered how significant Susan's Christian life is in relating to the world she's rediscovering. One of her speech therapy exercises is word deduction, where three clues lead you to determine what object they're describing, like "petals, stem, fragrance = flower." Susan got stumped on "desert, hump, animal." When Alecia added "wise men," Susan answered correctly – "camel." Faith runs deep.
Sun 10/14/07
Susan has completed 27 of 30 radiation treatments and will conclude her radiation/chemo combination on Wed 10/17. She mostly has held up well under it, except for growing fatigue, muscle weakness, confusion, and hair loss. We recognize and are thankful that the side effects of oral temodar are easier than other chemotherapies – yet it's hard to see them happen to a loved one at any level. I prepared myself for the idea of Susan losing all her hair, and was quite relieved to learn that hair loss is not as certain for temodar patients. Still, the entire radiation/chemo combo has left her with a sizable bald spot on the left front of her head where the radiation hits; and her hair has been thinning overall for a while now. While I wonder how much more hair she'll lose, we'll avoid doing the big buzz while we can – our friend and Susan's hairstylist, Jennifer Daws, gave her a cute bob-style cut a few weeks ago that we'd like to keep.
We visited an infectious disease specialist at UCLA this week to find out just how Notre Dame could have beaten their football team – I mean to follow up on the fungal infection that caused her meningitis. Her current radiation and chemo treatments would cloud the results of a spinal tap, so we'll hold off on that test. However, Susan did stay on the fluconozole anti-fungal course twice as long as usual to really nail the candida infection. We agreed with the doctor to suspend the fluconozole and watch her symptoms – so far, so good.
She's been making progress in her speech therapy visits and homework. Susan has to work extra hard since much of her memory & cognitive exercises involve reading, quite a challenge for her. She strains to make out letters that form words and hold those words in mind while she deciphers new ones – she continues to get better at it. She commands her deep vocabulary well as that bright intellect struggles to emerge. She'll continue speech therapy as the pace of low-vision therapy picks up and chemo/radiation wanes.
Our life continues to be marked by profound contrasts between the way it is now and the way it was four months ago. My time is more stretched than ever while I balance care for Susan with kids, household and work. I'm adjusting to the fact that the volume of time I spent at church previously as an elder, singer, and worship leader was possible because Susan handled the home front. Now, during this season, we attend the 9am service and head home so Susan can rest. It's all...different. (Saturdays are among the toughest for me to manage because of doing & supervising yard work, handling household projects, meal planning, grocery shopping, and cooking. Thanks to God, we have the gift of housecleaners and occasional meals.)
Susan is at once improving with her memory and also is frequently confused. She is my beautiful wife and also a brain cancer patient with its physical effects. She has periods of strength and lucidness and some days is more generally "out of it." As for God, He is ever faithful in the present, but immensely silent about the future. He is allowing crushing circumstances, but sustains us with the real knowledge of His goodness and of the hope He holds out for us. As we talked recently about these times, Susan and I agreed the "x" factor, the difference-maker, the thing that somehow makes it all ok – is the gift of hope. We know it's a hope that does not disappoint.
Tue 10/23/07
I'm pleased to report Susan's condition is stable and improving, with little news or developments over the past week. This quiet spell is welcome. With radiation and chemotherapy treatments ending 10/17, she has had a bit more energy. Her medical symptoms are minimal and she no longer needs the volume of meds she did a month ago. Her antifungals are done; and she finished with her round of temodar chemotherapy, she's off the anti-nausea and antibiotic meds that go with it. Although she always seems to have a low-grade headache, she doesn't have the extreme head pain she did 4-6 weeks ago, so she hasn't needed a vicodin for days at a time. We are thankful for her progress.
We had an evaluation visit at home with an experienced low-vision therapist referred to us by the College of Optometry. She was impressed with Susan's condition and confident in her ability to help Susan learn adaptive vision techniques for greater overall function. We will set up regular visits after she coordinates the details with the Dept of Rehabilitation.
Ever the hard-working patient, Susan does a routine of daily physical and speech therapy exercises with the help of her caregivers. She's usually ready for a late-morning nap after her therapies, then she's rested and ready for lunch and any afternoon appointments.
God is awesome. He demonstrates his love for us daily in many ways, not the least of which are the loving acts of Susan's caregivers. There are 18 ladies from our church who have volunteered to be with Susan in morning and afternoon shifts on weekdays and have become no less than lifeblood for our family. They faithfully visit each day to help with her therapies, make lunch, and sometimes even help with housework. I'm sure they didn't realize that helping Susan do her exercises means she would make them do them with her! The ladies also free my time to get tasks done at home and get to the office. Their physical presence and their emotional and spiritual support are a vital part of Susan's rehabilitation. Each sister in Christ brings her own style of care and nurturing – they make up a beautiful team. If we could somehow repay them for their time and energy (an absurd idea), we would. But theirs is a gift, these faithful acts of loving kindness. And amazingly, what we receive as meeting an immense need, we often hear is the highlight of their week. Needless to say, we're grateful to them and to Dorothy Romberg for organizing the effort.
I received another such gift on Saturday as Doug Palmer, Alvie Chavarria, Ulysses Gallegos and Brent Koble showed up on Saturday with power tools and strong backs to make our gardens look like more like Disneyland. They gave me a huge gift of time in doing my semi-annual trimming that would have been a two-week project for me, and they freed me to get my weekly shopping done early. I guess I need to be aware of what I write on these pages – Doug saw my recent comments about Saturdays being hectic and stressful. Although I was just blowing off steam as I often do, my brothers zeroed in on a need and met it. Big time. Thanks, guys.
Like I said, God is awesome. As I consider the Lord's work in our lives and how He does for us and how we do for each other, it's a wondrous thing. It's often the same thing, that our acts of love are the direct hand of God. Since Jesus left the earth and now reigns in heaven with the Father, He intends that we be His body on earth, guided and empowered by the Holy Spirit – the Body of Christ. As Christian believers understand and take our role seriously, we are literally God's instruments of ministry to each other and to those who don't yet know Him. This is yet another divine mystery as God works His will among people. Somehow, even a small, ordinary desire of a normal believer, like the desire to do something kind, can be God-breathed and have a tremendous impact in God's kingdom. It's just awesome.
Aside from her brain swelling episode a couple of weeks ago, Susan's status has remained stable since her most recent hospital discharge in early September. After one week on oral chemotherapy, the most consistent side effect has been periodic joint and muscle pain. Potential nausea is abated with zofran, a med she takes an hour before her nightly chemo pills. We're thankful for these relatively few complications. She's had a couple of speech therapy sessions along with daily homework – cognitive exercises to add to her physical therapy routine. I'm adjusting to Susan's early-bird schedule. She's often down for the night by 8:30 or 9pm, and lately has been awake, alert and ready for whatever at 4:30 or 5am. If she's up, then I need to be up, so I need to get to sleep early as well, or I'll be zonked the next day. Our days are busy with at-home therapies, radiation treatments, doctor visits, and kids' activities.
I'm getting back to the office more often for a span of hours to keep the irons hot, though I'm still officially on leave. We accomplish it all with the help of our amazing friends and family who attend Susan during the day, take her to radiation and lab visits; provide us with meals, and whisk our sons to and from church. We are rich with friends – gazillionaires.
Two things have remained persistent since our lives were so drastically altered in late June – the gravity of Susan's illness and the faithfulness of God. I've mentioned the disappointment that emerges following a missed opportunity for divine healing. We had the build-up before surgery filled with faith, prayer, and a pregnant opportunity for a God-glorifying miracle. When it didn't happen, we felt the let down at the collision of our will and God's, and the grief of accepting that though He could have healed just then, he did not. Life is a mystery. In the fog of the unknown, we celebrate that God doesn't change: His love is overwhelming, His favor is upon us, His power is complete, His will perfect. While the medical outlook for grade IV glioblastoma offers limited life expectancy, God will heal her if He chooses. Meanwhile, we continually experience the miracle of love given by friends and family who share all manner of resources with us. This week, another set of Arco gift cards arrived to fill our gas tanks for the better part of a month. The anonymous giver just wants us to know we're loved and prayed for – thank you, Lord.
Wed 10/03/07
We met today with a rep from the CA State Dept of Rehabilitation who was referred to us by the So Cal College of Optometry. The DOR provides equipment and reimbursement for low-vision therapy patients like Susan who are disabled and making effort to return to work eventually. We are thankful for yet another valuable resource.
Fri 10/05/07
Our friend Alecia discovered how significant Susan's Christian life is in relating to the world she's rediscovering. One of her speech therapy exercises is word deduction, where three clues lead you to determine what object they're describing, like "petals, stem, fragrance = flower." Susan got stumped on "desert, hump, animal." When Alecia added "wise men," Susan answered correctly – "camel." Faith runs deep.
Sun 10/14/07
Susan has completed 27 of 30 radiation treatments and will conclude her radiation/chemo combination on Wed 10/17. She mostly has held up well under it, except for growing fatigue, muscle weakness, confusion, and hair loss. We recognize and are thankful that the side effects of oral temodar are easier than other chemotherapies – yet it's hard to see them happen to a loved one at any level. I prepared myself for the idea of Susan losing all her hair, and was quite relieved to learn that hair loss is not as certain for temodar patients. Still, the entire radiation/chemo combo has left her with a sizable bald spot on the left front of her head where the radiation hits; and her hair has been thinning overall for a while now. While I wonder how much more hair she'll lose, we'll avoid doing the big buzz while we can – our friend and Susan's hairstylist, Jennifer Daws, gave her a cute bob-style cut a few weeks ago that we'd like to keep.
We visited an infectious disease specialist at UCLA this week to find out just how Notre Dame could have beaten their football team – I mean to follow up on the fungal infection that caused her meningitis. Her current radiation and chemo treatments would cloud the results of a spinal tap, so we'll hold off on that test. However, Susan did stay on the fluconozole anti-fungal course twice as long as usual to really nail the candida infection. We agreed with the doctor to suspend the fluconozole and watch her symptoms – so far, so good.
She's been making progress in her speech therapy visits and homework. Susan has to work extra hard since much of her memory & cognitive exercises involve reading, quite a challenge for her. She strains to make out letters that form words and hold those words in mind while she deciphers new ones – she continues to get better at it. She commands her deep vocabulary well as that bright intellect struggles to emerge. She'll continue speech therapy as the pace of low-vision therapy picks up and chemo/radiation wanes.
Our life continues to be marked by profound contrasts between the way it is now and the way it was four months ago. My time is more stretched than ever while I balance care for Susan with kids, household and work. I'm adjusting to the fact that the volume of time I spent at church previously as an elder, singer, and worship leader was possible because Susan handled the home front. Now, during this season, we attend the 9am service and head home so Susan can rest. It's all...different. (Saturdays are among the toughest for me to manage because of doing & supervising yard work, handling household projects, meal planning, grocery shopping, and cooking. Thanks to God, we have the gift of housecleaners and occasional meals.)
Susan is at once improving with her memory and also is frequently confused. She is my beautiful wife and also a brain cancer patient with its physical effects. She has periods of strength and lucidness and some days is more generally "out of it." As for God, He is ever faithful in the present, but immensely silent about the future. He is allowing crushing circumstances, but sustains us with the real knowledge of His goodness and of the hope He holds out for us. As we talked recently about these times, Susan and I agreed the "x" factor, the difference-maker, the thing that somehow makes it all ok – is the gift of hope. We know it's a hope that does not disappoint.
Tue 10/23/07
I'm pleased to report Susan's condition is stable and improving, with little news or developments over the past week. This quiet spell is welcome. With radiation and chemotherapy treatments ending 10/17, she has had a bit more energy. Her medical symptoms are minimal and she no longer needs the volume of meds she did a month ago. Her antifungals are done; and she finished with her round of temodar chemotherapy, she's off the anti-nausea and antibiotic meds that go with it. Although she always seems to have a low-grade headache, she doesn't have the extreme head pain she did 4-6 weeks ago, so she hasn't needed a vicodin for days at a time. We are thankful for her progress.
We had an evaluation visit at home with an experienced low-vision therapist referred to us by the College of Optometry. She was impressed with Susan's condition and confident in her ability to help Susan learn adaptive vision techniques for greater overall function. We will set up regular visits after she coordinates the details with the Dept of Rehabilitation.
Ever the hard-working patient, Susan does a routine of daily physical and speech therapy exercises with the help of her caregivers. She's usually ready for a late-morning nap after her therapies, then she's rested and ready for lunch and any afternoon appointments.
God is awesome. He demonstrates his love for us daily in many ways, not the least of which are the loving acts of Susan's caregivers. There are 18 ladies from our church who have volunteered to be with Susan in morning and afternoon shifts on weekdays and have become no less than lifeblood for our family. They faithfully visit each day to help with her therapies, make lunch, and sometimes even help with housework. I'm sure they didn't realize that helping Susan do her exercises means she would make them do them with her! The ladies also free my time to get tasks done at home and get to the office. Their physical presence and their emotional and spiritual support are a vital part of Susan's rehabilitation. Each sister in Christ brings her own style of care and nurturing – they make up a beautiful team. If we could somehow repay them for their time and energy (an absurd idea), we would. But theirs is a gift, these faithful acts of loving kindness. And amazingly, what we receive as meeting an immense need, we often hear is the highlight of their week. Needless to say, we're grateful to them and to Dorothy Romberg for organizing the effort.
I received another such gift on Saturday as Doug Palmer, Alvie Chavarria, Ulysses Gallegos and Brent Koble showed up on Saturday with power tools and strong backs to make our gardens look like more like Disneyland. They gave me a huge gift of time in doing my semi-annual trimming that would have been a two-week project for me, and they freed me to get my weekly shopping done early. I guess I need to be aware of what I write on these pages – Doug saw my recent comments about Saturdays being hectic and stressful. Although I was just blowing off steam as I often do, my brothers zeroed in on a need and met it. Big time. Thanks, guys.
Like I said, God is awesome. As I consider the Lord's work in our lives and how He does for us and how we do for each other, it's a wondrous thing. It's often the same thing, that our acts of love are the direct hand of God. Since Jesus left the earth and now reigns in heaven with the Father, He intends that we be His body on earth, guided and empowered by the Holy Spirit – the Body of Christ. As Christian believers understand and take our role seriously, we are literally God's instruments of ministry to each other and to those who don't yet know Him. This is yet another divine mystery as God works His will among people. Somehow, even a small, ordinary desire of a normal believer, like the desire to do something kind, can be God-breathed and have a tremendous impact in God's kingdom. It's just awesome.
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