The MRI today did not bring good news. The scan showed significant brain swelling in the left frontal cavity where Susan’s tumor was removed that has pushed the left hemisphere across the midline. That explains why she’s been struggling so much. Dr. Nghiemphu showed us the views done with IV contrast where there’s a lot of contrasted area in the cavity on the left and the “remaining” tumor site on the right, explaining it’s probably tumor resurgence. She said the amount of change over the past six weeks is cause for concern.
While we could push to get Susan on a clinical trial like the brain cancer vaccine/immunotherapy at this time, the doctor would like to see her begin treatment with a chemotherapy called CPT-11 plus a biological agent called Avastin. Avastin was developed for colorectal cancer and has been found to cut off the blood supply to brain tumors. It’s been approved in the USA and is still in late clinical trials elsewhere. The CPT-11/Avastin combination is now the most common 2nd line of treatment for brain tumor recurrence and is the same one our friend Jeff Nord is having now. Since it’s an intravenous program, she'll have infusions every two weeks at UCLA beginning in a couple of weeks once it’s approved by our insurance company. We're hopeful the Avastin will do its thing to cut off the blood flow to her tumor and we’re hoping to see relief of symptoms in the next few days as she goes back on the anti-swelling steroids for now.
We've had the blessing of stable improvement for five months, so this turn is discouraging. This change is hard because it seemed like Susan’s stability might continue indefinitely. Today we were reminded how aggressive this type of cancer is. But God's presence is life-giving, His faithfulness protects us, and His gift of hope sustains us always. Just today, our bad news was tempered with two generous and anonymous gifts (one by mail, one by the church offering plate), some gift cards for dinner, and an offer from the drug company to pay for Susan’s Avastin if our insurance company won’t. We're so grateful for our church family and for the kindness of caring people. We are holding to God's unchanging hand.
Wednesday, April 30, 2008
Tuesday, April 29, 2008
Struggling
Fri 04/25/08
This has been a rough couple of days for Susan on the lower dose of prednisone. She started off the week doing well, but has developed a severe headache, neck pain and stiffness, and is generally slower and more confused. The vicodin helps for pain. I hope she improves soon.
Susan was scheduled to begin her monthly temodar chemotherapy on Sunday, but will need to wait until Monday because today’s blood test results didn’t get faxed to UCLA in time. Her neuro-oncologist uses the two monthly blood tests to check for infection, blood sugar, and liver/kidney function before releasing her to begin chemo.
Sat 04/26/08
Susan had her last hyperbaric oxygen treatment today and will have a follow-up visit next week at the Whitaker clinic. It’s hard to say what the effect has been since it’s subject to the patient being able to notice improvement and since ten treatments is often the first of several rounds with only slight progress at first. Susan’s compromised state right now may make it harder to sense any improvement.
Mon 04/28/08
Susan’s symptoms have not improved over the past few days. When I contacted Dr. Nghiemphu today to let her know about her solid headache, neck pain/stiffness and increased confusion, she said the symptoms are more than she’d expect from a taper to 7.5 mg of prednisone. She ordered an MRI for this week and will hold off on Susan’s chemo for now.
This has been a rough couple of days for Susan on the lower dose of prednisone. She started off the week doing well, but has developed a severe headache, neck pain and stiffness, and is generally slower and more confused. The vicodin helps for pain. I hope she improves soon.
Susan was scheduled to begin her monthly temodar chemotherapy on Sunday, but will need to wait until Monday because today’s blood test results didn’t get faxed to UCLA in time. Her neuro-oncologist uses the two monthly blood tests to check for infection, blood sugar, and liver/kidney function before releasing her to begin chemo.
Sat 04/26/08
Susan had her last hyperbaric oxygen treatment today and will have a follow-up visit next week at the Whitaker clinic. It’s hard to say what the effect has been since it’s subject to the patient being able to notice improvement and since ten treatments is often the first of several rounds with only slight progress at first. Susan’s compromised state right now may make it harder to sense any improvement.
Mon 04/28/08
Susan’s symptoms have not improved over the past few days. When I contacted Dr. Nghiemphu today to let her know about her solid headache, neck pain/stiffness and increased confusion, she said the symptoms are more than she’d expect from a taper to 7.5 mg of prednisone. She ordered an MRI for this week and will hold off on Susan’s chemo for now.
Wednesday, April 23, 2008
Weaning off steroids, beginning vision therapy
Sun 04/20/08
Today was Susan’s latest try at reducing her daily dose of prednisone from 10 mg to 7.5 mg. We visited with her neuro-oncologist at UCLA yesterday who agrees we can try to taper her off the steroid again. Dr. Nghiemphu prepared us for Susan to experience a slump at first, but to try to hang in there until her system stabilizes. Once she’s at 7.5 mg for two weeks, we can introduce 5 mg every other day.
Another reflection on this weekend’s conference at UCLA – no matter what, having a brain tumor is hard. Of course, someone in the end stages of a terminal disease is faced with the fact and the process of dying. It’s a heavy thing. Yet one woman there had a benign (non-cancerous) tumor, underwent successful surgery to remove it and is in good health a year later. But being diagnosed and treated for a brain tumor rattled her deeply. She said she can’t get over it. Some members of her family have grown frustrated because she’s still so affected; but she can’t help it. Then one man who was there is a ten-year glioblastoma survivor, an amazing thing since so few GBM patients survive after just five years. He said his ten-year GBM anniversary came and went unnoticed by his family and friends. No one called. No one mentioned it. His adult kids and grandkids moved on with their lives since his illness emerged and subsided after treatment. He said even he can go for periods of time without thinking about it, but it never quite goes away. The threat of the disease is always there. Each coming MRI brings on the question of a relapse. No matter what – an end-stage vigil, a near-miss escapee, a long-term survivor – having a brain tumor is hard.
Tue 04/22/08
Susan started vision therapy today with Chris at Dr. Ikeda’s office. She’ll have 16 weekly sessions focused on multi-sensory tasks that involve speaking and listening as well as the visual. Her homework requires her to scan, read, and remember and is a bit of a challenge. We hope the therapy will revive the stroke-affected areas of her brain.
Today was Susan’s latest try at reducing her daily dose of prednisone from 10 mg to 7.5 mg. We visited with her neuro-oncologist at UCLA yesterday who agrees we can try to taper her off the steroid again. Dr. Nghiemphu prepared us for Susan to experience a slump at first, but to try to hang in there until her system stabilizes. Once she’s at 7.5 mg for two weeks, we can introduce 5 mg every other day.
Another reflection on this weekend’s conference at UCLA – no matter what, having a brain tumor is hard. Of course, someone in the end stages of a terminal disease is faced with the fact and the process of dying. It’s a heavy thing. Yet one woman there had a benign (non-cancerous) tumor, underwent successful surgery to remove it and is in good health a year later. But being diagnosed and treated for a brain tumor rattled her deeply. She said she can’t get over it. Some members of her family have grown frustrated because she’s still so affected; but she can’t help it. Then one man who was there is a ten-year glioblastoma survivor, an amazing thing since so few GBM patients survive after just five years. He said his ten-year GBM anniversary came and went unnoticed by his family and friends. No one called. No one mentioned it. His adult kids and grandkids moved on with their lives since his illness emerged and subsided after treatment. He said even he can go for periods of time without thinking about it, but it never quite goes away. The threat of the disease is always there. Each coming MRI brings on the question of a relapse. No matter what – an end-stage vigil, a near-miss escapee, a long-term survivor – having a brain tumor is hard.
Tue 04/22/08
Susan started vision therapy today with Chris at Dr. Ikeda’s office. She’ll have 16 weekly sessions focused on multi-sensory tasks that involve speaking and listening as well as the visual. Her homework requires her to scan, read, and remember and is a bit of a challenge. We hope the therapy will revive the stroke-affected areas of her brain.
Sunday, April 20, 2008
UCLA brain tumor conference
Sat 04/19/08
We attended the annual UCLA Brain Tumor Conference yesterday and today. The brain tumor world is an amazing place, and bigger than I imagined. I’m guessing there were 150 patients and caregivers at the meeting. It's just weird to look around a large room and see scads of people with scars on their heads in various stages of treatment, of time since diagnosis, and of cognitive and physical ability. There were are men and women of all kinds - aside from certain generalities, it's clear that brain tumors have no regard for age, gender, ethnicity, or socio-economic status. Aside from being surreal, it was also comforting. You gather strength and support from those who are walking in your footsteps.
We learned some amazing facts about the number of new cancer cases each year – lung cancer 215,000 cases; prostate cancer 186,000; breast cancer 182,000, skin cancer 63,000; leukemia 44,000; and brain tumors 21,000 (American Cancer Society). That’s over 700,000 new cancer diagnoses from this list alone, about 3% of them brain tumors, and an unfathomable impact on families whose lives are changed forever.
One thing is clear: the professionals at UCLA are bright people, a team of doctors and staff at the pinnacle of their disciplines who work in demanding specialties. The meeting was hosted by Tim Cloughesy, who directs the neuro-oncology program at UCLA – he and his staff are cancer doctors who specialize in brain tumors. We heard presentations by a neuro-radiologist who interprets MRI and CT scans of brain tumors, a neurosurgeon who operates on brain tumors, a neuro-pathologist who analyzes and classifies brain tumor tissues, and a radiation oncologist who provides radiation therapy for brain tumors. Wow that’s a lot of specialists. Everyone did a reasonably good job of boiling down the medical lingo for people like us, but it was all pretty hard to digest at once. I felt like not only was I drinking from a fire hose, I could barely hold the hose. The neuro-oncologists on the team are like wagon masters who interact with the other specialists and guide their patients through the course of treatment. That’s Leia Nghiemphu for Susan. All of these people are caring, extremely hard-working, and totally committed to extending and improving life for their patients. It became clear to us that they’re completely unsatisfied with the current state of treatment. It’s the best we’ve got; but they’ll keep pushing for a cure. May God bless them.
We learned that on one level, a brain tumor is a brain tumor. It’s a bad thing nobody wants that makes you remember the date, time and place you were when you learned you or your loved one has it. I think the comparisons pretty much end there. There are soo many variables. In what region of the brain is it located? Did it originate there (primary) or did it spread from somewhere else (metastatic)? What grade is it, from I to IV (benign – malignant)? Is it operable? What is the patient’s age and overall health? What is the patient’s mental, emotional, and spiritual outlook? What are the patient’s financial and insurance resources? How solid is the patient’s family, friends, and support network? In what region of the country does the patient live? All of these factors will play out in each brain tumor patient’s outcome. Even two patients of the same age and gender with glioblastoma in the same region and same treatments may have different results. We’ve learned not to draw either elation or despair from another patient’s situation. It’s meaningless to transfer someone else’s conclusion to yours. Ultimately, we put our trust in God.
We also learned that for patients like Susan who have glioblastoma multiforme (GBM), there is a first-line treatment, all of which Susan had: a surgery to remove as much tumor as possible followed by radiation therapy combined with temodar chemotherapy, followed by monthly temodar and periodic MRIs. Temodar has been around since about 1998 and is effective for a number of people. Patients stay on this treatment mode unless the tumor surges back. If it resurges, the second-line treatment is a chemotherapy-drug combination of CPT-11 and Avastin. This combination has had good results in clinical trials and is expected to be a common alternative.
The difference in the room – who has accepted death? One valuable workshop on Saturday was called Understanding the Family Experience, hosted by two cancer support social workers. There were presentations from a physician diagnosed 2-3 years ago with glioblastoma and a family whose wife/mother diagnosed last year also with GBM. The format was interactive, allowing a lot of time for people in the room to air questions and share stories. The discussion that unfolded was quite emotional as patients and family members reckoned with the gravity of the disease. Some people were gripped by fear and despair, even breaking down emotionally while others around them offered comfort. Others were upbeat, hopeful, and encouraging. In that session I understood again how important it is to accept the reality of death for yourself and your loved ones. Since Jesus defeated death for us on the cross and secured eternal life for us in rising from the dead, the sting of death has been removed for the believer. Apart from Christ, the thought of death is crushing because death truly is the end and should be something to fear. It was no surprise that most of the hopeful ones in the room made it clear they were Christians. Our help is in the name of the Lord.
We attended the annual UCLA Brain Tumor Conference yesterday and today. The brain tumor world is an amazing place, and bigger than I imagined. I’m guessing there were 150 patients and caregivers at the meeting. It's just weird to look around a large room and see scads of people with scars on their heads in various stages of treatment, of time since diagnosis, and of cognitive and physical ability. There were are men and women of all kinds - aside from certain generalities, it's clear that brain tumors have no regard for age, gender, ethnicity, or socio-economic status. Aside from being surreal, it was also comforting. You gather strength and support from those who are walking in your footsteps.
We learned some amazing facts about the number of new cancer cases each year – lung cancer 215,000 cases; prostate cancer 186,000; breast cancer 182,000, skin cancer 63,000; leukemia 44,000; and brain tumors 21,000 (American Cancer Society). That’s over 700,000 new cancer diagnoses from this list alone, about 3% of them brain tumors, and an unfathomable impact on families whose lives are changed forever.
One thing is clear: the professionals at UCLA are bright people, a team of doctors and staff at the pinnacle of their disciplines who work in demanding specialties. The meeting was hosted by Tim Cloughesy, who directs the neuro-oncology program at UCLA – he and his staff are cancer doctors who specialize in brain tumors. We heard presentations by a neuro-radiologist who interprets MRI and CT scans of brain tumors, a neurosurgeon who operates on brain tumors, a neuro-pathologist who analyzes and classifies brain tumor tissues, and a radiation oncologist who provides radiation therapy for brain tumors. Wow that’s a lot of specialists. Everyone did a reasonably good job of boiling down the medical lingo for people like us, but it was all pretty hard to digest at once. I felt like not only was I drinking from a fire hose, I could barely hold the hose. The neuro-oncologists on the team are like wagon masters who interact with the other specialists and guide their patients through the course of treatment. That’s Leia Nghiemphu for Susan. All of these people are caring, extremely hard-working, and totally committed to extending and improving life for their patients. It became clear to us that they’re completely unsatisfied with the current state of treatment. It’s the best we’ve got; but they’ll keep pushing for a cure. May God bless them.
We learned that on one level, a brain tumor is a brain tumor. It’s a bad thing nobody wants that makes you remember the date, time and place you were when you learned you or your loved one has it. I think the comparisons pretty much end there. There are soo many variables. In what region of the brain is it located? Did it originate there (primary) or did it spread from somewhere else (metastatic)? What grade is it, from I to IV (benign – malignant)? Is it operable? What is the patient’s age and overall health? What is the patient’s mental, emotional, and spiritual outlook? What are the patient’s financial and insurance resources? How solid is the patient’s family, friends, and support network? In what region of the country does the patient live? All of these factors will play out in each brain tumor patient’s outcome. Even two patients of the same age and gender with glioblastoma in the same region and same treatments may have different results. We’ve learned not to draw either elation or despair from another patient’s situation. It’s meaningless to transfer someone else’s conclusion to yours. Ultimately, we put our trust in God.
We also learned that for patients like Susan who have glioblastoma multiforme (GBM), there is a first-line treatment, all of which Susan had: a surgery to remove as much tumor as possible followed by radiation therapy combined with temodar chemotherapy, followed by monthly temodar and periodic MRIs. Temodar has been around since about 1998 and is effective for a number of people. Patients stay on this treatment mode unless the tumor surges back. If it resurges, the second-line treatment is a chemotherapy-drug combination of CPT-11 and Avastin. This combination has had good results in clinical trials and is expected to be a common alternative.
The difference in the room – who has accepted death? One valuable workshop on Saturday was called Understanding the Family Experience, hosted by two cancer support social workers. There were presentations from a physician diagnosed 2-3 years ago with glioblastoma and a family whose wife/mother diagnosed last year also with GBM. The format was interactive, allowing a lot of time for people in the room to air questions and share stories. The discussion that unfolded was quite emotional as patients and family members reckoned with the gravity of the disease. Some people were gripped by fear and despair, even breaking down emotionally while others around them offered comfort. Others were upbeat, hopeful, and encouraging. In that session I understood again how important it is to accept the reality of death for yourself and your loved ones. Since Jesus defeated death for us on the cross and secured eternal life for us in rising from the dead, the sting of death has been removed for the believer. Apart from Christ, the thought of death is crushing because death truly is the end and should be something to fear. It was no surprise that most of the hopeful ones in the room made it clear they were Christians. Our help is in the name of the Lord.
Friday, April 18, 2008
Another brain buddy visit, hyperbaric oxygen treatments
Tue 04/15/08
Tonight we visited our friends Joanne and her husband Floyd to encourage and pray with them before Joanne has a second surgery tomorrow for her brain tumor that was diagnosed in December. Following Temodar-radiation that ended in March, her tumor evidently grew back quickly. We pray for her healing and for a life-changing God encounter for them and their family. We’re thankful we can share our faith and experiences and that the Lord can use them to bring encouragement and peace to others during such a mysterious and difficult time.
Thu 04/17/08
With four hyperbaric oxygen treatments done, Susan has done well this week with the new therapy. It’s actually a pleasant experience. Susan sits in recliner of sorts on rails and puts an oxygen mask over her mouth and nose. The chair slides forward into the chamber that resembles a small space craft with porthole windows on the sides and a windshield-type glass on the front. Then a door closes behind her and gets sealed shut. She can rest or watch TV through the window for the 45-minute session. It’s too soon to know whether it’s working since the minimum is ten treatments before evaluation. Success in this case is purely based on her symptoms, which either improve or not. We’ll see!
My prayers with Susan have changed lately. While we have not faltered in knowing God will heal Susan if He wants to, her illness so far has been more of a process of gradual improvements in the face of a grave and incurable cancer. We long for her to be healed and restored completely so we ask God for it continually. Yet it seems He means for our experience to be a journey in which we learn to trust Him during and in spite of these circumstances – her complete healing may or not be part of it. But I think we are having a more profound experience of knowing Him than we would have if God had healed her last July. It’s not an easy season nor do we want it; but there’s a precious and growing value in it. I think affliction has an awful price, but can have a priceless outcome. As we try to discern God’s will during Susan’s cancer ordeal, we do ask Him daily to heal her, but we’re also asking for something possibly greater we sense He may want for us – transformation.
Tonight we visited our friends Joanne and her husband Floyd to encourage and pray with them before Joanne has a second surgery tomorrow for her brain tumor that was diagnosed in December. Following Temodar-radiation that ended in March, her tumor evidently grew back quickly. We pray for her healing and for a life-changing God encounter for them and their family. We’re thankful we can share our faith and experiences and that the Lord can use them to bring encouragement and peace to others during such a mysterious and difficult time.
Thu 04/17/08
With four hyperbaric oxygen treatments done, Susan has done well this week with the new therapy. It’s actually a pleasant experience. Susan sits in recliner of sorts on rails and puts an oxygen mask over her mouth and nose. The chair slides forward into the chamber that resembles a small space craft with porthole windows on the sides and a windshield-type glass on the front. Then a door closes behind her and gets sealed shut. She can rest or watch TV through the window for the 45-minute session. It’s too soon to know whether it’s working since the minimum is ten treatments before evaluation. Success in this case is purely based on her symptoms, which either improve or not. We’ll see!
My prayers with Susan have changed lately. While we have not faltered in knowing God will heal Susan if He wants to, her illness so far has been more of a process of gradual improvements in the face of a grave and incurable cancer. We long for her to be healed and restored completely so we ask God for it continually. Yet it seems He means for our experience to be a journey in which we learn to trust Him during and in spite of these circumstances – her complete healing may or not be part of it. But I think we are having a more profound experience of knowing Him than we would have if God had healed her last July. It’s not an easy season nor do we want it; but there’s a precious and growing value in it. I think affliction has an awful price, but can have a priceless outcome. As we try to discern God’s will during Susan’s cancer ordeal, we do ask Him daily to heal her, but we’re also asking for something possibly greater we sense He may want for us – transformation.
Tuesday, April 15, 2008
More therapies
Tue 04/08/08
Since Susan’s been on steroids to reduce brain swelling for ten months, I am more than eager for her to get off them. With their lousy side effects and negative impact on people who have fungal infections, we’ve been trying to taper her gradually for months. The problem is synthetic steroids cause the body to stop producing its own natural ones and reversing the situation is difficult. We tried it the past few days, reducing her dose from 10mg daily to 7.5mg. A headache that developed Sunday became severe yesterday morning and caused nausea and vomiting. Increasing her dosage overnight and today seems to have fixed the pain, but not the problem.
On a different note, Susan, her dad and I had a consultation with Dr. Filidei at the Whitaker Wellness Institute to discuss hyperbaric treatment for stroke symptoms – we’re hoping for improved vision. A hyperbaric chamber provides oxygen at higher than atmospheric pressure to build up oxygen in a patient’s blood and tissues. It’s been effective as an alternative medicine for neuro-rehab in some people. Sue’s mom and dad are paying for the treatments since it’s not covered by insurance. The Whitaker people need to approve it since she’s a brain tumor patient; but we expect treatments to start next week.
Sun 04/13/08
Our son Adam left on his week-long school choir tour to Vancouver BC early this morning. They’ll sing at various high schools and get an educational experience at museums, parks, and government offices. With our other two kids otherwise occupied at lunchtime after church, Susan and I headed for fish tacos at Seal Beach and a walk on the pier afterwards. With afternoon temps over 90° at home, we were mesmerized by the cool sea air and stunning views – it looked like we could touch Catalina Island, and looking inland, we could see from the Santa Monica mountains in one direction to San Gorgonio Peak in the other. We were in a perfect spot to enjoy a rare day in So Cal with 100 mile visibility. As we had walked onto the pier, we saw lots of activity near the water like kite flying, swimming, body boarding, and Frisbee and so on. Just then a family with young children passed us excitedly – the boys looked about five years old. As he sized up the situation at the beach, one little guy pronounced, “Oh, everybody’s having fun!” Maybe he didn’t know what to expect, but he was right. Everybody was having fun. It turned into a memorable date for Susan and me.
Mon 04/14/08
I went with Susan for a follow-up visit with our friend and chiropractor, Jim Augustine. He did a biofeedback-type of body scan in March to check out Susan’s major body systems for overall health, prescribed a number of nutritional supplements, and began a series of bio-cranial adjustments. His work is designed to understand specifically where health is compromised and to help the body use its innate ability to fix the problems since God created us that way. Ever the compassionate practitioner, Jim is committed to seeing Susan get well and fulfill a vision he had of seeing her in perfect health. Someone has donated a sum of money to subsidize her treatments – a fact that blows us away. The results of re-doing a couple of tests after six weeks showed Susan made some improvements in important areas. The tests also showed sluggishness in other vital systems, possibly caused by drugs she’s taking. We pray for wisdom in knowing how best to proceed in the world of cancer treatment where the fix for a monumental problem causes serious problems on another level. How can you kill a tumor without killing the patient? This is such a thorny experience.
Since Susan’s been on steroids to reduce brain swelling for ten months, I am more than eager for her to get off them. With their lousy side effects and negative impact on people who have fungal infections, we’ve been trying to taper her gradually for months. The problem is synthetic steroids cause the body to stop producing its own natural ones and reversing the situation is difficult. We tried it the past few days, reducing her dose from 10mg daily to 7.5mg. A headache that developed Sunday became severe yesterday morning and caused nausea and vomiting. Increasing her dosage overnight and today seems to have fixed the pain, but not the problem.
On a different note, Susan, her dad and I had a consultation with Dr. Filidei at the Whitaker Wellness Institute to discuss hyperbaric treatment for stroke symptoms – we’re hoping for improved vision. A hyperbaric chamber provides oxygen at higher than atmospheric pressure to build up oxygen in a patient’s blood and tissues. It’s been effective as an alternative medicine for neuro-rehab in some people. Sue’s mom and dad are paying for the treatments since it’s not covered by insurance. The Whitaker people need to approve it since she’s a brain tumor patient; but we expect treatments to start next week.
Sun 04/13/08
Our son Adam left on his week-long school choir tour to Vancouver BC early this morning. They’ll sing at various high schools and get an educational experience at museums, parks, and government offices. With our other two kids otherwise occupied at lunchtime after church, Susan and I headed for fish tacos at Seal Beach and a walk on the pier afterwards. With afternoon temps over 90° at home, we were mesmerized by the cool sea air and stunning views – it looked like we could touch Catalina Island, and looking inland, we could see from the Santa Monica mountains in one direction to San Gorgonio Peak in the other. We were in a perfect spot to enjoy a rare day in So Cal with 100 mile visibility. As we had walked onto the pier, we saw lots of activity near the water like kite flying, swimming, body boarding, and Frisbee and so on. Just then a family with young children passed us excitedly – the boys looked about five years old. As he sized up the situation at the beach, one little guy pronounced, “Oh, everybody’s having fun!” Maybe he didn’t know what to expect, but he was right. Everybody was having fun. It turned into a memorable date for Susan and me.
Mon 04/14/08
I went with Susan for a follow-up visit with our friend and chiropractor, Jim Augustine. He did a biofeedback-type of body scan in March to check out Susan’s major body systems for overall health, prescribed a number of nutritional supplements, and began a series of bio-cranial adjustments. His work is designed to understand specifically where health is compromised and to help the body use its innate ability to fix the problems since God created us that way. Ever the compassionate practitioner, Jim is committed to seeing Susan get well and fulfill a vision he had of seeing her in perfect health. Someone has donated a sum of money to subsidize her treatments – a fact that blows us away. The results of re-doing a couple of tests after six weeks showed Susan made some improvements in important areas. The tests also showed sluggishness in other vital systems, possibly caused by drugs she’s taking. We pray for wisdom in knowing how best to proceed in the world of cancer treatment where the fix for a monumental problem causes serious problems on another level. How can you kill a tumor without killing the patient? This is such a thorny experience.
Friday, April 4, 2008
Our vital perspective
Thu 04/03/08
Bill White’s sermon last Sunday that launched our new series at church called “The Power of Now” resonated deeply with me. Preaching on Jesus’ story of the rich man and Lazarus in Luke 16, Bill confronted our lack of awareness as Americans about the fact of our own death – and the consequences of getting it wrong that heaven and hell are real.
Needless to say, the fact of death has become prominent for Susan and our family over the past 9 months. I asked Susan how she felt about the message on Sunday. She said because of what’s happened to her, she’s accepted the idea of her dying and is at peace with it. That’s a confidence that comes from the Living God alone. It’s priceless, worth far more than ordinary wealth. Imagine being a billionaire and knowing you’re going to die next week. All your money, the American Dream you’ve worked decades to acquire, the desirability of access and privilege that draws people to notice you and treat you with high esteem – it’s all worthless now if you want peace in dying apart from God. Rich and poor alike are laid in the dirt when they die, each body as lifeless as the other. Death is the great equalizer – and the human death rate is still 100%.
I’m reading a book called “A Shepherd Looks at Psalm 23” in which a 20th Century shepherd helps clarify the imagery found in the Bible. In the “Shadow of Death” chapter I read this week, he says:
Bill White’s sermon last Sunday that launched our new series at church called “The Power of Now” resonated deeply with me. Preaching on Jesus’ story of the rich man and Lazarus in Luke 16, Bill confronted our lack of awareness as Americans about the fact of our own death – and the consequences of getting it wrong that heaven and hell are real.
Needless to say, the fact of death has become prominent for Susan and our family over the past 9 months. I asked Susan how she felt about the message on Sunday. She said because of what’s happened to her, she’s accepted the idea of her dying and is at peace with it. That’s a confidence that comes from the Living God alone. It’s priceless, worth far more than ordinary wealth. Imagine being a billionaire and knowing you’re going to die next week. All your money, the American Dream you’ve worked decades to acquire, the desirability of access and privilege that draws people to notice you and treat you with high esteem – it’s all worthless now if you want peace in dying apart from God. Rich and poor alike are laid in the dirt when they die, each body as lifeless as the other. Death is the great equalizer – and the human death rate is still 100%.
I’m reading a book called “A Shepherd Looks at Psalm 23” in which a 20th Century shepherd helps clarify the imagery found in the Bible. In the “Shadow of Death” chapter I read this week, he says:
The disappointments, the frustrations, the discouragements, the dilemmas, the
dark, difficult days, though they be shadowed valleys, need not be disasters.
They can be the road to higher ground in our walk with God.
After all when we pause to think about it a moment, we must realize that even our modern mountain highways follow the valleys to reach the summit of the passes they traverse. Similarly the ways of God lead upward through the valleys of our lives. Again and again I remind myself, “O God, this seems terribly tough, but I know for a
fact that in the end it will prove to be the easiest and gentlest way to get me
onto higher ground.” Then when I thank Him for the difficult things, the dark
days, I discover that He is there with me in my distress. At that point my
panic, my fear, my misgivings give way to calm and quiet confidence in His care.
Somehow, in a serene and quiet way I am assured all will turn out well for my
best because He is with me in the valley and things are under His control.
To come to this conviction in the Christian life is to have entered into an
attitude of quiet acceptance of every adversity. It is to have moved onto higher
ground with God. Knowing Him in this new and intimate manner makes life much
more bearable than before.
Thursday, April 3, 2008
Troublesome chemo, hopeful vision therapy
Sun 03/30/08
Susan will begin her 7th month of temodar chemotherapy tonight. She’s been tolerating it well all along, so it’s become a routine event for five days each month. We continue to trust and ask God for healing from cancer and restoration of sight. Susan’s poor vision is her most troubling issue. Our help is in the name of the Lord.
Tue 04/01/08
So much for chemo being a routine event. Susan was out of it this morning. What began as an easy day yesterday became more difficult as she felt worse throughout the afternoon and evening. She had a restless and uncomfortable night with nausea, disorientation and feeling plain lousy, worse than she has in months. She’s really tired today. She said everything’s tilted and makes her dizzy. I cleared my day to observe her out of concern we might be seeing an infection get out of control, and was relieved that she felt better as the day went on. She did not have a fever. It’s odd that the temodar would make her feel this way after just one or two days. Perhaps she was readjusting to lower altitude after being in Mammoth or reacting to being back on the steroid Decadron for a week. Anyway, she’s better now.
Wed 04/02/08
Addressing a major need, today we had another visit with Dr Ikeda, the Bellflower optometrist who specializes in neuro-optometry and rehabilitation for patients recovering from stroke and brain injury. What a gift. He did a brief exam to make sure her new glasses have the right prescriptions and confirmed that Susan’s eyes are fine. There’s nothing mechanically wrong with them. The problem is cognitive or brain-oriented. He then described what her visual experience is like with eloquence and technical accuracy that completely matched what she’s been saying in her own words – dim light, spottiness, trouble focusing, blurred and double images, etc.
Susan felt relieved that someone actually understands what her vision is like. And it’s truly encouraging because there’s no fix without knowing the problem; and he knows the problem. So the next step is visual rehabilitation, a multi-sensory behavioral approach that will help with techniques for adapting and allowing the brain to build new pathways. He says it will be hard work. Susan will start in three weeks. Meanwhile, I’ll try to work out the insurance support. We are grateful to have his help.
Susan will begin her 7th month of temodar chemotherapy tonight. She’s been tolerating it well all along, so it’s become a routine event for five days each month. We continue to trust and ask God for healing from cancer and restoration of sight. Susan’s poor vision is her most troubling issue. Our help is in the name of the Lord.
Tue 04/01/08
So much for chemo being a routine event. Susan was out of it this morning. What began as an easy day yesterday became more difficult as she felt worse throughout the afternoon and evening. She had a restless and uncomfortable night with nausea, disorientation and feeling plain lousy, worse than she has in months. She’s really tired today. She said everything’s tilted and makes her dizzy. I cleared my day to observe her out of concern we might be seeing an infection get out of control, and was relieved that she felt better as the day went on. She did not have a fever. It’s odd that the temodar would make her feel this way after just one or two days. Perhaps she was readjusting to lower altitude after being in Mammoth or reacting to being back on the steroid Decadron for a week. Anyway, she’s better now.
Wed 04/02/08
Addressing a major need, today we had another visit with Dr Ikeda, the Bellflower optometrist who specializes in neuro-optometry and rehabilitation for patients recovering from stroke and brain injury. What a gift. He did a brief exam to make sure her new glasses have the right prescriptions and confirmed that Susan’s eyes are fine. There’s nothing mechanically wrong with them. The problem is cognitive or brain-oriented. He then described what her visual experience is like with eloquence and technical accuracy that completely matched what she’s been saying in her own words – dim light, spottiness, trouble focusing, blurred and double images, etc.
Susan felt relieved that someone actually understands what her vision is like. And it’s truly encouraging because there’s no fix without knowing the problem; and he knows the problem. So the next step is visual rehabilitation, a multi-sensory behavioral approach that will help with techniques for adapting and allowing the brain to build new pathways. He says it will be hard work. Susan will start in three weeks. Meanwhile, I’ll try to work out the insurance support. We are grateful to have his help.
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