Fri 11/10/07
Austin and Adam joined me this afternoon to visit Susan, taking turns to meet the two-at-a-time limit in the NTCU. She had vomited in the am, but rested later and was able to eat lunch. I was thankful to be there for first-hand information when the neuro team made rounds at 4pm. Since fungi grow more slowly than bacteria, they take longer to eliminate. Even the initial fungal culture from Wed will not have developed until Sat or Sun. As a result, Susan will need to be hospitalized for at least a week or more until the infection is negative and the shunts can be placed. She's not happy about the idea, but she understands it's necessary.
Susan had the PICC line installed yesterday, replacing the small-volume line they had placed in her foot. IVs are a continual problem for her since she's limited to her left side after breast cancer treatment and right-side lymph node removal. Her left arm is full of scar tissue after five hospital stays and dozens of blood draws, so the PICC line really helps.
Sun 11/11/07
With frequent nausea and vomiting, fatigue and confusion, this was a difficult weekend for Susan. Her doctors have not confirmed absolutely what meningitis organism she's fighting since her blood and spinal fluid cultures from Wed/Thu are still growing, so she's on a shotgun approach of antifungals and antibiotics like last time. However, it appears this time one of the antibiotics is causing her nausea and requires premedication to prevent it. We hope it provides relief.
Mon 11/12/07
We thank God that Susan has improved and had her best day yet – no nausea, with greater strength and alertness. In a development that is confusing for me, she has tested negative for infection. This is good news along with her general progress; but it doesn't explain why the meningitis returned. If the Lord wants to heal it outright, we'll take it, and anticipate the doctors' upcoming reports.
Another beautiful realization came to rest with us today. God never promised we would not have troubles, nor did He guarantee he would take our troubles away – but He has given us something that is greater, His faithful assurance that He is always with us. It's better to go through tough times with God than have it easy and never know Him.
Tuesday, November 13, 2007
Friday, November 9, 2007
Yet another hospitalization
Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.
Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.
Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.
We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.
Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.
Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.
Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.
Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.
We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.
Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.
Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.
Wednesday, October 31, 2007
More progress
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.
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 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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