Wed 09/26/07
Susan had a scheduled follow-up visit with neuro-oncologist Dr Nghiemphu at UCLA, who took a great while to examine her condition, plan our next therapeutic steps, and answer questions. Susan will meet with an infectious disease doctor soon to wrap up her treatment for fungal infection and meningitis; meanwhile, she'll begin oral chemotherapy tonight.
We discussed radiation oncologist Dr Puthawala's concern about the delay in beginning chemo, since Susan is halfway through her radiation schedule, and the standard protocol for grade IV glioblastoma is to run radiation and chemo simultaneously. Dr Nghiemphu had discussed the question with him and maintained her position that Susan should finish the anti-fungal treatment before starting chemo. I agree with and appreciate her position that there was greater risk to Susan's sustainable health if her fungal infection were not controlled. Some cancer therapies trace the balance between killing the cancer and killing the patient; a weakened patient may lose the availability of other options that could be employed later. It's clear that cancer treatment is as individualized as the patient and the practitioner.
Thu 09/27/07
Susan had her low-vision evaluation today at the Southern California College of Optometry in Fullerton, a lengthy and thorough exam. While her vision isn't as poor as you might think (about 20/70 without correction), her brain has trouble processing the information due to stroke. She has right-side peripheral blindness and a straight-on blind spot. She's actually better able to see someone's face and eyes by looking at the top of their head instead of directly at them – this is called eccentric viewing. Since her current glasses have progressive lenses, she'll need two new eyeglasses with simple lenses, one for reading and one for distance, that will allow her to practice eccentric viewing. Next, we'll meet with a low-vision therapist to discuss adaptations Susan can use in addition to corrective lenses.
Susan and I had a long talk last night while the kids were at work and church. We talked about how much things have changed in our lives in only a few months. We talked about our gratitude for the amazing financial and emotional support we've gotten from friends and family. And we talked about how thankful we are that we've reached a place of acceptance in our circumstances. We each shared that we've accepted our own death as a fact. Susan will die. I will die. It's inevitable. If it doesn't come sooner, it will come later, so we're not fighting it. The good thing is now we know the freedom that comes in realizing that we're each dying and welcoming it as a reality. We're not weighed down with the futile grasping of denial. We're not gnashing and moaning in anger, or pining away with thoughts of why this happened or if only it weren't true. Instead, we know our days are numbered, and we are free to celebrate them. Life is more precious when you know death awaits. We're still fighting – fighting for health and fighting to push through, fighting against cancer and fighting for restoration, whatever that will be like. We are no longer fighting against death, we're fighting for life. It's a subtle difference, but vital. Susan has a sense of purpose in this season: that God yet has good work to do in us, that her time to die is not imminent, and that she will be a witness to His grace and His power. We talked about how all this is possible because Jesus died, rose again to remove the sting of death, and reigns in Heaven to secure our eternal life. This is the truth that is our source of hope. Meanwhile, we talked about how thankful we are that God meets our needs daily. We talked about our love and gratitude for each other, and how content we are to be together each day. We had a good, long talk.
Friday, September 28, 2007
Wednesday, September 26, 2007
Settling in
Sat 09/22/07
The fact that these reports are more periodic than regular episodes means we're settling in to more of the routine of life in our circumstances than the crisis mode of previous hospitalizations – a good thing. Susan continues to work hard in daily physical therapy as our faithful friends help each morning and afternoon. Saturday marked Susan's second session with Herb Stockman and his quantum biofeedback device. Like before, the visit was relaxing and therapeutic, treating her for imbalances in a variety of areas and detoxifying her system.
Sun 09/23/07
We enjoyed an uplifting message from Jason Brown at church on being the salt of the earth and the light of the world along with the always-inspiring worship music at Emmanuel Church. Susan looked darling in the new clothes Lori White helped her buy. The 9am service seems to fit best right now in allowing Susan her much-needed rest in the late morning.
At dinner, we hosted our dear friends Jeff and Jayne Nord at our home. As I've mentioned before, Jeff was diagnosed with a brain tumor only weeks before Susan. We find great comfort in sharing our experiences as we are traveling this bizarre journey together, and continue praying for Jeff's healing and strength. Their website is http://www.nordsville.blogspot.com/.
Mon 09/24/07
I laid low this morning with another gallstone attack that came on about 3am, managing to handle it with pain medication that eventually took hold and avoid a trip to the ER. Since I figure surgery is better than gallstone attacks and a natural remedy is better than surgery, I resolve to nail this ailment with help from – would you believe – gallbladderattack.com. Check it out at http://www.gallbladderattack.com/index.shtml. I'm on the beet recipe for now and will do the major gallbladder-liver flush. It's time to fix it.
I took Susan for a manicure and pedicure after radiation therapy. She got the spa version with soaking her feet in the jacuzzi thing whilst reposing in the massage-chair. Give me a USC football game and I'm right next to her. The treatment made her nails look lovely and made her feel great, worth every one of the thirty dollars, tip included.
Tue 09/25/07
Susan had her first speech therapy session today following last week's evaluation, and will have a low vision evaluation on Thursday. These are essential components for her to adapt and recuperate.
We're more focused than ever on the value of nutrition as an essential element in beating cancer. Surgery, radiation, and chemotherapy can reduce tumor burden and rid the body of masses of cancer cells. But how did the body allow the cancer to advance initially? We know the cancer patient is a host organism trying to fend off an invading illness, not to mention the effect of the therapies. We know God built into our bodies the ability to heal themselves using the foods He provided on the earth. And we know the food industry practices of the past 100 years have delivered to us tasty and convenient foods that lack their original nutritional power. Though it's hard to un-learn the eating habits of 4 1/2 decades, it's worth it to give Susan every chance for her body to kill cancer rather than vice versa.
Susan and I are more convinced than ever that God is doing a great work in the midst of our circumstances. We are witnessing His faithfulness and grace to us in profound ways, not the least of which are the generous gifts we have received. We've expressed our gratitude as best we can to those who've given to us help and meals and money, and we've received so much anonymously – our words fail, and they've lost their object anyway, so we can only extend our gratitude to God for moving people to help in such amazing ways. Thank you.
There's more about what He's doing in the mystery of His will as people are sharing the encouragement they receive from our experiences. No doubt you'd list malignant brain cancer as one of the worst things that could happen to you – I know four months ago, Susan and I would have. But now that it's upon us, it's strange to say that it's okay. God has given us the certainty of our belonging with Him at all times and the knowledge of His presence with us in all things, so it's okay. The song is true: you can have all this world – give me Jesus. Paul is right: to live is Christ and to die is gain, so what does cancer matter, really? God has made us strong in this, so we thank God. And as God is helping others be strengthened in their circumstances through us – well, that's an amazing privilege. We thank Him even more.
I rejoiced to read what my dear friend and brother John Halma wrote the other day: "Your journey has inspired many to pray at our church in Norwalk, Iowa....be assured through your suffering that the kingdom is advancing and that lives are being changed in places and ways you would not dream of. God knows." That is truly humbling. Thanks be to God.
The fact that these reports are more periodic than regular episodes means we're settling in to more of the routine of life in our circumstances than the crisis mode of previous hospitalizations – a good thing. Susan continues to work hard in daily physical therapy as our faithful friends help each morning and afternoon. Saturday marked Susan's second session with Herb Stockman and his quantum biofeedback device. Like before, the visit was relaxing and therapeutic, treating her for imbalances in a variety of areas and detoxifying her system.
Sun 09/23/07
We enjoyed an uplifting message from Jason Brown at church on being the salt of the earth and the light of the world along with the always-inspiring worship music at Emmanuel Church. Susan looked darling in the new clothes Lori White helped her buy. The 9am service seems to fit best right now in allowing Susan her much-needed rest in the late morning.
At dinner, we hosted our dear friends Jeff and Jayne Nord at our home. As I've mentioned before, Jeff was diagnosed with a brain tumor only weeks before Susan. We find great comfort in sharing our experiences as we are traveling this bizarre journey together, and continue praying for Jeff's healing and strength. Their website is http://www.nordsville.blogspot.com/.
Mon 09/24/07
I laid low this morning with another gallstone attack that came on about 3am, managing to handle it with pain medication that eventually took hold and avoid a trip to the ER. Since I figure surgery is better than gallstone attacks and a natural remedy is better than surgery, I resolve to nail this ailment with help from – would you believe – gallbladderattack.com. Check it out at http://www.gallbladderattack.com/index.shtml. I'm on the beet recipe for now and will do the major gallbladder-liver flush. It's time to fix it.
I took Susan for a manicure and pedicure after radiation therapy. She got the spa version with soaking her feet in the jacuzzi thing whilst reposing in the massage-chair. Give me a USC football game and I'm right next to her. The treatment made her nails look lovely and made her feel great, worth every one of the thirty dollars, tip included.
Tue 09/25/07
Susan had her first speech therapy session today following last week's evaluation, and will have a low vision evaluation on Thursday. These are essential components for her to adapt and recuperate.
We're more focused than ever on the value of nutrition as an essential element in beating cancer. Surgery, radiation, and chemotherapy can reduce tumor burden and rid the body of masses of cancer cells. But how did the body allow the cancer to advance initially? We know the cancer patient is a host organism trying to fend off an invading illness, not to mention the effect of the therapies. We know God built into our bodies the ability to heal themselves using the foods He provided on the earth. And we know the food industry practices of the past 100 years have delivered to us tasty and convenient foods that lack their original nutritional power. Though it's hard to un-learn the eating habits of 4 1/2 decades, it's worth it to give Susan every chance for her body to kill cancer rather than vice versa.
Susan and I are more convinced than ever that God is doing a great work in the midst of our circumstances. We are witnessing His faithfulness and grace to us in profound ways, not the least of which are the generous gifts we have received. We've expressed our gratitude as best we can to those who've given to us help and meals and money, and we've received so much anonymously – our words fail, and they've lost their object anyway, so we can only extend our gratitude to God for moving people to help in such amazing ways. Thank you.
There's more about what He's doing in the mystery of His will as people are sharing the encouragement they receive from our experiences. No doubt you'd list malignant brain cancer as one of the worst things that could happen to you – I know four months ago, Susan and I would have. But now that it's upon us, it's strange to say that it's okay. God has given us the certainty of our belonging with Him at all times and the knowledge of His presence with us in all things, so it's okay. The song is true: you can have all this world – give me Jesus. Paul is right: to live is Christ and to die is gain, so what does cancer matter, really? God has made us strong in this, so we thank God. And as God is helping others be strengthened in their circumstances through us – well, that's an amazing privilege. We thank Him even more.
I rejoiced to read what my dear friend and brother John Halma wrote the other day: "Your journey has inspired many to pray at our church in Norwalk, Iowa....be assured through your suffering that the kingdom is advancing and that lives are being changed in places and ways you would not dream of. God knows." That is truly humbling. Thanks be to God.
Thursday, September 20, 2007
New therapy, more grace
Tue 09/18/07
Yesterday was the toughest day we've had in a while. Susan said if you ask her what she did on Monday, she'll say she threw up. All day. Her nausea and vomiting persisted from morning till night as pill and suppository were unable to ebb the tide. The culprit was decadron, or lack of it, as Susan's body needs the steroid to fend off brain swelling while she's having radiation therapy. Without it, as we discovered, her head pain soared, nausea took hold, and high fever emerged, up to 102F last night. Thankfully, we were able to have anti-nausea meds take hold and phase in decadron and vicodin – allowing her to hold down liquids and some food, break the fever, and suppress pain. These drugs are simply a part of life for now. I'm frustrated that her recent hospital discharge instructions had me get her off the steroid when she clearly needs it. In the future I will not assume that every MD is prescribing correctly or coordinating treatment properly with Susan's neuro-oncologist.
Wed 09/19/07
Susan had her speech therapy evaluation today at LB Memorial. As it happened, our dear friends Jeff & Jayne Nord were there also for Jeff's evaluation following his radiation and chemotherapy. With Jeff's and Susan's brain tumors being diagnosed weeks apart, their experiences have held much in common. As we greeted each other in the lobby with hugs all around among our memory-impaired spouses, Jayne and I decided we are quite a couple of couples. Susan's speech therapist was amazed at how much she's been through as well as impressed with how much she's improved since early July. We traced the complexity of her condition with vision, color, and memory deficits interacting with word confusion – she some ground to cover. We were encouraged to expect gains in her ability to adapt to permanent weaknesses, but moreover that her neurological wiring will actually reconnect over the coming weeks of therapy. The brain is amazing. We also got a reality check in realizing her condition could take a couple of years to improve to pre-tumor status (assuming tumor is held at bay). In the short term, she may struggle against radiation and the coming chemotherapy. Meanwhile, I'm processing her application for Social Security disability benefits, and I'm eager to have her vision evaluated for acuity and low vision therapy within about ten days.
Late this afternoon as Susan got ready for a nap, she dislodged her sandals and asked for her "bedtime slippers," a pair of ankle-high pink suede jobs with fleece lining. My wife, the nemesis of cold feet, said "whoever invented them deserves a ticket to heaven."
I was in a grumbly mood on Sunday as I stopped at Arco to fuel the car, grateful for the gift card I was using from a loving friend, but feeling burdened about our circumstances and bummed that this was our last gas card. A man pulled in along the same island, got out of his car, and asked me if I had an extra dollar or two for gas. I declined him – truthfully, since I had a twenty or so but no singles. He proceeded to hit up several others as he made his way to the cashier. I grumbled to myself – there sits my wife in the passenger seat with her big scalp scar and uncertain future and I'm on unpaid leave right now – and wallowed in my thoughts for a few minutes as the tank nearly filled.
Then I realized whatever money the no-cash guy had mustered only bought him a thin minute or two at his pump. My pump totaled about $36 and our car was full, leaving about $14 on the card. My heart softened as from the Lord when I considered I just received a full tank of gas at someone else's expense and I surely could share out of my abundance. I offered the card to the no-cash guy and exchanged a "God bless you" with him. I felt better, not so grumbly. And then...the next day, we received a beautiful greeting card with TWO more Arco cards, and another one today along with one for groceries. It's crazy. That's God for you.
Yesterday was the toughest day we've had in a while. Susan said if you ask her what she did on Monday, she'll say she threw up. All day. Her nausea and vomiting persisted from morning till night as pill and suppository were unable to ebb the tide. The culprit was decadron, or lack of it, as Susan's body needs the steroid to fend off brain swelling while she's having radiation therapy. Without it, as we discovered, her head pain soared, nausea took hold, and high fever emerged, up to 102F last night. Thankfully, we were able to have anti-nausea meds take hold and phase in decadron and vicodin – allowing her to hold down liquids and some food, break the fever, and suppress pain. These drugs are simply a part of life for now. I'm frustrated that her recent hospital discharge instructions had me get her off the steroid when she clearly needs it. In the future I will not assume that every MD is prescribing correctly or coordinating treatment properly with Susan's neuro-oncologist.
Wed 09/19/07
Susan had her speech therapy evaluation today at LB Memorial. As it happened, our dear friends Jeff & Jayne Nord were there also for Jeff's evaluation following his radiation and chemotherapy. With Jeff's and Susan's brain tumors being diagnosed weeks apart, their experiences have held much in common. As we greeted each other in the lobby with hugs all around among our memory-impaired spouses, Jayne and I decided we are quite a couple of couples. Susan's speech therapist was amazed at how much she's been through as well as impressed with how much she's improved since early July. We traced the complexity of her condition with vision, color, and memory deficits interacting with word confusion – she some ground to cover. We were encouraged to expect gains in her ability to adapt to permanent weaknesses, but moreover that her neurological wiring will actually reconnect over the coming weeks of therapy. The brain is amazing. We also got a reality check in realizing her condition could take a couple of years to improve to pre-tumor status (assuming tumor is held at bay). In the short term, she may struggle against radiation and the coming chemotherapy. Meanwhile, I'm processing her application for Social Security disability benefits, and I'm eager to have her vision evaluated for acuity and low vision therapy within about ten days.
Late this afternoon as Susan got ready for a nap, she dislodged her sandals and asked for her "bedtime slippers," a pair of ankle-high pink suede jobs with fleece lining. My wife, the nemesis of cold feet, said "whoever invented them deserves a ticket to heaven."
I was in a grumbly mood on Sunday as I stopped at Arco to fuel the car, grateful for the gift card I was using from a loving friend, but feeling burdened about our circumstances and bummed that this was our last gas card. A man pulled in along the same island, got out of his car, and asked me if I had an extra dollar or two for gas. I declined him – truthfully, since I had a twenty or so but no singles. He proceeded to hit up several others as he made his way to the cashier. I grumbled to myself – there sits my wife in the passenger seat with her big scalp scar and uncertain future and I'm on unpaid leave right now – and wallowed in my thoughts for a few minutes as the tank nearly filled.
Then I realized whatever money the no-cash guy had mustered only bought him a thin minute or two at his pump. My pump totaled about $36 and our car was full, leaving about $14 on the card. My heart softened as from the Lord when I considered I just received a full tank of gas at someone else's expense and I surely could share out of my abundance. I offered the card to the no-cash guy and exchanged a "God bless you" with him. I felt better, not so grumbly. And then...the next day, we received a beautiful greeting card with TWO more Arco cards, and another one today along with one for groceries. It's crazy. That's God for you.
Tuesday, September 18, 2007
In therapy, under grace
Sat 09/15/07
Susan has had a great week, gaining strength and becoming more functional. She has daily physical therapy exercises and is trying to do more tasks around the house. Our friend Alecia, who stayed with Susan Friday morning, is an experienced RN (one of three who help) who encourages patients to do household activities for therapy and a sense of accomplishment. They did exercises, laundry, made brownies (and cleaned up) and washed dishes. We are grateful to the ladies from our church family who care for Susan.
Having tapered off the decadron (anti-inflammatory steroid) she's been on since late June, Susan has had a bit more headache, but otherwise seems to be doing well. Also the fluconazole anti-fungal appears to be doing its part to quell the candida infection that caused meningitis. Susan is having weekly blood tests for her doctors to evaluate.
Susan has had 7 radiation treatments with no noticeable side effects. With thanks to God, her radiation doses are only moderate since surgery eliminated so much tumor mass and we pray her treatments will be effective.
It's been hard at times to accept God's will in Susan's brain cancer, that she would have a separate, primary brain tumor after last year's breast cancer. While we've never stopped trusting Him (who is the Living God, who has all power in His hands, who loves us beyond our understanding), we've been waiting... and waiting... and waiting for Him to show up against this mortal illness with something glorious and majestic. We're asking for a miraculous healing, though from our perspective, God's timing, even His answers, often do not satisfy us immediately.
But God indeed has been doing something glorious and majestic – He has made Himself present to us through His people. We have been amazed more and more at the outpouring of love, prayers and gifts from our family and friends. To date we've received over 200 greeting cards and over 450 emails. We've received gift cards for gas, groceries, restaurants, movies, Starbucks, Baskin-Robbins and Jamba Juice; we've had our house cleaned weekly and our mortgage paid; we've had dinners provided three nights a week for almost three months and thousands of dollars in cash given anonymously. Words fail to convey our gratitude. This is God's way, to meet us in unimaginable circumstances with equally unimaginable grace and love through the Body of Christ. Tomorrow continues to be unknowable, like it always has been; but today we know the love of God and of His people and we have just what we need. We thank God for showing up.
Sun 09/16/07
Susan had more headache and fatigue today and needed a longer nap after our morning church service and lunch at home. The family had a delicious dinner at Mimi's Cafe provided by a loving church family. We are blessed.
Mon 09/17/07
I'm home with Susan following a tough morning of headache, low-grade fever, nausea and vomiting. After cousin Stacy (also a nurse) helped us a few hours this morning, I took Susan for a walk-in blood test after several conversations with UCLA staff. Dr Cloughesy will check results from his stat order this afternoon. While she could be experiencing side effects from radiation, headache and nausea are also possible effects of having no synthetic steroid (decadron) dose since Friday – her longest interruption since late June. I'm told the body can have trouble restarting its own hormone production below the 2mg level of decadron, so Susan will go back on the drug again on an even slower taper schedule.
We recently received our Amazon order for Beating Cancer With Nutruition by Patrick Quillen. A well-nourished cancer patient can better manage the disease and therapies, harnessing the healing power of nature and science and allowing the body to self-regulate and self-repair. The author rates foods based on nutrient density, glycemic index, and anti-cancer properties. I regret the foods listed in the lowest categories are all-too familiar: BAD – pickles, salami, bologna, sausage, hot dog, barbeque ribs, waffles, pancakes, cake, cookies, ice cream, and blue cheese dressing. WORST – margarine, aspartame, syrup, monosodium glutamate, soda & diet soda, pastries, pie, doughnuts, lard, hydrogenated fats, sugar, and hard liquor. Cancer cells must love our weekends and holidays.
Susan has had a great week, gaining strength and becoming more functional. She has daily physical therapy exercises and is trying to do more tasks around the house. Our friend Alecia, who stayed with Susan Friday morning, is an experienced RN (one of three who help) who encourages patients to do household activities for therapy and a sense of accomplishment. They did exercises, laundry, made brownies (and cleaned up) and washed dishes. We are grateful to the ladies from our church family who care for Susan.
Having tapered off the decadron (anti-inflammatory steroid) she's been on since late June, Susan has had a bit more headache, but otherwise seems to be doing well. Also the fluconazole anti-fungal appears to be doing its part to quell the candida infection that caused meningitis. Susan is having weekly blood tests for her doctors to evaluate.
Susan has had 7 radiation treatments with no noticeable side effects. With thanks to God, her radiation doses are only moderate since surgery eliminated so much tumor mass and we pray her treatments will be effective.
It's been hard at times to accept God's will in Susan's brain cancer, that she would have a separate, primary brain tumor after last year's breast cancer. While we've never stopped trusting Him (who is the Living God, who has all power in His hands, who loves us beyond our understanding), we've been waiting... and waiting... and waiting for Him to show up against this mortal illness with something glorious and majestic. We're asking for a miraculous healing, though from our perspective, God's timing, even His answers, often do not satisfy us immediately.
But God indeed has been doing something glorious and majestic – He has made Himself present to us through His people. We have been amazed more and more at the outpouring of love, prayers and gifts from our family and friends. To date we've received over 200 greeting cards and over 450 emails. We've received gift cards for gas, groceries, restaurants, movies, Starbucks, Baskin-Robbins and Jamba Juice; we've had our house cleaned weekly and our mortgage paid; we've had dinners provided three nights a week for almost three months and thousands of dollars in cash given anonymously. Words fail to convey our gratitude. This is God's way, to meet us in unimaginable circumstances with equally unimaginable grace and love through the Body of Christ. Tomorrow continues to be unknowable, like it always has been; but today we know the love of God and of His people and we have just what we need. We thank God for showing up.
Sun 09/16/07
Susan had more headache and fatigue today and needed a longer nap after our morning church service and lunch at home. The family had a delicious dinner at Mimi's Cafe provided by a loving church family. We are blessed.
Mon 09/17/07
I'm home with Susan following a tough morning of headache, low-grade fever, nausea and vomiting. After cousin Stacy (also a nurse) helped us a few hours this morning, I took Susan for a walk-in blood test after several conversations with UCLA staff. Dr Cloughesy will check results from his stat order this afternoon. While she could be experiencing side effects from radiation, headache and nausea are also possible effects of having no synthetic steroid (decadron) dose since Friday – her longest interruption since late June. I'm told the body can have trouble restarting its own hormone production below the 2mg level of decadron, so Susan will go back on the drug again on an even slower taper schedule.
We recently received our Amazon order for Beating Cancer With Nutruition by Patrick Quillen. A well-nourished cancer patient can better manage the disease and therapies, harnessing the healing power of nature and science and allowing the body to self-regulate and self-repair. The author rates foods based on nutrient density, glycemic index, and anti-cancer properties. I regret the foods listed in the lowest categories are all-too familiar: BAD – pickles, salami, bologna, sausage, hot dog, barbeque ribs, waffles, pancakes, cake, cookies, ice cream, and blue cheese dressing. WORST – margarine, aspartame, syrup, monosodium glutamate, soda & diet soda, pastries, pie, doughnuts, lard, hydrogenated fats, sugar, and hard liquor. Cancer cells must love our weekends and holidays.
Tuesday, September 11, 2007
Radiation therapy, lots of help at home
Fri 09/06/07
A dear friend from church arranged for Susan to have an alternative medicine treatment with a "quantum biofeedback" system. A type of electromagnetic therapy, the device uses electrodes and 32-gigabyte computer program to analyze a person's physical and emotional condition, identify blockages and imbalances, correct them, and allow the body to heal itself. It's hard for me to summarize the what and the how of energy medicine, but it's another resource we're exploring to help Susan's body fend off cancer and the effects other therapies.
Thu 09/07/07
Susan's condition continues to improve with a high-dose, oral anti-fungal drug called fluconasole (diflucan) that she'll be on until Oct 1. Her temodar chemotherapy will be delayed until about that time to allow the infection to heal. We'll watch her symptoms for any relapse and have blood tests to guard against adverse side effects with her liver.
Susan was attended by friends of ours from church who came by in 3 to 4 hour morning and afternoon shifts to provide care for her while Lexie worked and the boys had their first day of school. I actually went to work for several hours; and Sue's parents took her to radiation. This was the first day of our new fall routine.
Sun 09/09/07
Susan continues to improve with rest and medications. We had some family time with my brother Jon on Saturday and mom, grandmother, and sister Becky on Sunday. We also attended church together for the first time in about a month, enjoying the worship, the Word, and the fellowship.
Mon 09/10/07
We revisited our new fall schedule with Lexie at CSULB, the boys in school, and me at work. Our sister-in-law Dorothy has arranged for morning and afternoon care Mon-Fri with 10-15 ladies from our church. I'm thankful! I set up instructions for her care with physical therapy exercises and other activities during the day, including a pain med log for continuity. We're blessed to have such caring friends who are available to help.
I took Susan to her radiation therapy and our first weekly consultation with her radiation oncologists. We each answered each other's questions – I'm grateful to have these caring specialists on our team.
We dropped by our Pavilions grocery pharmacy to have a prescription refilled and were overwhelmed by the love expressed to us by our pharmacist and his assistant. Ray, the pharmacist, offered us his prayers along with his "whatever I can do" attitude. Sylvia, the tech who also has been a dental hygiene patient of Susan's, gave her a beautiful Enesco angel figurine. People everywhere are amazing.
As we make the transition from summer to fall, I'm grateful for the timing of Susan's illness having begun in early summer when schedules were lighter and more unstructured. I guess if there were ever a good time to get used to having your life turned on end, summer would be it. In contrast, the fall season brings the weight of increased family activities, and the realization that we've quickly gone from Sue and me running our household while supporting three people to me running our household while supporting four. Time whizzes by (I left this website untouched for a week), priorities are numerous, and sleep is precious. It's all pretty heavy. I'm glad we have a lot of help.
Susan and I are continually and increasingly thankful to have each other. She relies on me more than ever, she understands the pressure I must be feeling, and is forever gracious and grateful. I find myself wanting nothing more than to be next to her since the days are uncertain. I am thankful to have her by my side in spite of her limitations – we still confide in and console each other – I still have my wife. We recognize the blessing of being able to communicate as we always have.
We recently read another amazing installment in Streams in the Desert that affected us deeply:
Lord, have mercy. I believe – help me also to obey.
A dear friend from church arranged for Susan to have an alternative medicine treatment with a "quantum biofeedback" system. A type of electromagnetic therapy, the device uses electrodes and 32-gigabyte computer program to analyze a person's physical and emotional condition, identify blockages and imbalances, correct them, and allow the body to heal itself. It's hard for me to summarize the what and the how of energy medicine, but it's another resource we're exploring to help Susan's body fend off cancer and the effects other therapies.
Thu 09/07/07
Susan's condition continues to improve with a high-dose, oral anti-fungal drug called fluconasole (diflucan) that she'll be on until Oct 1. Her temodar chemotherapy will be delayed until about that time to allow the infection to heal. We'll watch her symptoms for any relapse and have blood tests to guard against adverse side effects with her liver.
Susan was attended by friends of ours from church who came by in 3 to 4 hour morning and afternoon shifts to provide care for her while Lexie worked and the boys had their first day of school. I actually went to work for several hours; and Sue's parents took her to radiation. This was the first day of our new fall routine.
Sun 09/09/07
Susan continues to improve with rest and medications. We had some family time with my brother Jon on Saturday and mom, grandmother, and sister Becky on Sunday. We also attended church together for the first time in about a month, enjoying the worship, the Word, and the fellowship.
Mon 09/10/07
We revisited our new fall schedule with Lexie at CSULB, the boys in school, and me at work. Our sister-in-law Dorothy has arranged for morning and afternoon care Mon-Fri with 10-15 ladies from our church. I'm thankful! I set up instructions for her care with physical therapy exercises and other activities during the day, including a pain med log for continuity. We're blessed to have such caring friends who are available to help.
I took Susan to her radiation therapy and our first weekly consultation with her radiation oncologists. We each answered each other's questions – I'm grateful to have these caring specialists on our team.
We dropped by our Pavilions grocery pharmacy to have a prescription refilled and were overwhelmed by the love expressed to us by our pharmacist and his assistant. Ray, the pharmacist, offered us his prayers along with his "whatever I can do" attitude. Sylvia, the tech who also has been a dental hygiene patient of Susan's, gave her a beautiful Enesco angel figurine. People everywhere are amazing.
As we make the transition from summer to fall, I'm grateful for the timing of Susan's illness having begun in early summer when schedules were lighter and more unstructured. I guess if there were ever a good time to get used to having your life turned on end, summer would be it. In contrast, the fall season brings the weight of increased family activities, and the realization that we've quickly gone from Sue and me running our household while supporting three people to me running our household while supporting four. Time whizzes by (I left this website untouched for a week), priorities are numerous, and sleep is precious. It's all pretty heavy. I'm glad we have a lot of help.
Susan and I are continually and increasingly thankful to have each other. She relies on me more than ever, she understands the pressure I must be feeling, and is forever gracious and grateful. I find myself wanting nothing more than to be next to her since the days are uncertain. I am thankful to have her by my side in spite of her limitations – we still confide in and console each other – I still have my wife. We recognize the blessing of being able to communicate as we always have.
We recently read another amazing installment in Streams in the Desert that affected us deeply:
"There is a divine mystery in suffering, one that has a strange and supernatural power and has never been completely understood by human reason. No
one has ever developed a deep level of spirituality or holiness without
experiencing a great deal of suffering. When a person who suffers reaches a
point where he can be calm and carefree, inwardly smiling at his own suffering
and no longer asking God to be delivered from it, then he has accomplished its
blessed ministry, perseverance has 'finish[ed] its work' (James 1:4), and the
pain of the Crucifixion has begun to weave itself into a crown."
Lord, have mercy. I believe – help me also to obey.
Thursday, September 6, 2007
Progress and discharge
Sun 09/02/07
Susan was in good shape during our visit and was looking forward to a late afternoon bath. We expect her to be discharged on Tuesday with home-health nursing care and a four-week antifungal regimen. She is scheduled to begin radiation treatment on Wednesday at Long Beach Memorial and may start oral chemotherapy in another week.
Her latest chuckler was a comment about the professional quality of the nurses who care for her and how there's very little negativity – "A couple of them are not princes or princesses from the palace of joy, but most of them are pretty positive." She's got a million of them, I tell ya.
Here's a summary of Susan's condition: a grade IV brain tumor, 2 craniotomies, 5 hospitalizations in 10 weeks, current treatment for fungal meningitis, and ready to begin simultaneous radiation and chemotherapy. I'm on unpaid leave from work while holding down the fort and dodging gallstone attacks. That said, we're continually amazed at the daily readings from Streams in the Desert, the book Lisa Korver gave us. Whatever difficulties author LB Cowman endured prior to publishing the book in 1925, she knew suffering. On Sunday, this thought gripped me: sometimes we go through hardship unrelieved by encouragements because we need to trust God without them. Understanding may come (or not), but that is for another day. Meanwhile, His Word becomes real to us and we learn to trust Him.
Susan has had less pain the past couple of days and is in good spirits. Her attitude is wonderful – she's thankful to be feeling better because it allows her to be more devoted to others. Since it's hard to give out of weakness, she wants to be strong. I love that.
Mon 09/03/07
Susan & I spent Labor Day afternoon in her room at UCLA, the first time we missed being at our family cabin for this holiday in about 15 years. We took a walk down the long hospital corridor as I guided her by the hand and steered her IV carriage.
Tue 09/04/07
This was a long, frustrating day of waiting for a final spinal tap that never happened and discharge instructions that were not issued. We strolled the hallways again, this time with Susan using her new, wheeled walker – a stabilizing aid against vertigo and partial blindness. I learned later that the infectious disease and neurology teams had to sort out differing opinions on how to handle her anti-fungal meds (IV vs oral). While I'm grateful they have her best interests in mind, my gratitude was overcome by the letdown of leaving Susan there overnight again.
Wed 09/05/07
Susan was discharged in time for us to go home for lunch and get to her first radiation therapy at LB Memorial by 3pm. The treatment went smoothly as we prepared for the eventual side effects of localized hair loss, skin irritation and overall fatigue.
Susan was in good shape during our visit and was looking forward to a late afternoon bath. We expect her to be discharged on Tuesday with home-health nursing care and a four-week antifungal regimen. She is scheduled to begin radiation treatment on Wednesday at Long Beach Memorial and may start oral chemotherapy in another week.
Her latest chuckler was a comment about the professional quality of the nurses who care for her and how there's very little negativity – "A couple of them are not princes or princesses from the palace of joy, but most of them are pretty positive." She's got a million of them, I tell ya.
Here's a summary of Susan's condition: a grade IV brain tumor, 2 craniotomies, 5 hospitalizations in 10 weeks, current treatment for fungal meningitis, and ready to begin simultaneous radiation and chemotherapy. I'm on unpaid leave from work while holding down the fort and dodging gallstone attacks. That said, we're continually amazed at the daily readings from Streams in the Desert, the book Lisa Korver gave us. Whatever difficulties author LB Cowman endured prior to publishing the book in 1925, she knew suffering. On Sunday, this thought gripped me: sometimes we go through hardship unrelieved by encouragements because we need to trust God without them. Understanding may come (or not), but that is for another day. Meanwhile, His Word becomes real to us and we learn to trust Him.
Susan has had less pain the past couple of days and is in good spirits. Her attitude is wonderful – she's thankful to be feeling better because it allows her to be more devoted to others. Since it's hard to give out of weakness, she wants to be strong. I love that.
Mon 09/03/07
Susan & I spent Labor Day afternoon in her room at UCLA, the first time we missed being at our family cabin for this holiday in about 15 years. We took a walk down the long hospital corridor as I guided her by the hand and steered her IV carriage.
Tue 09/04/07
This was a long, frustrating day of waiting for a final spinal tap that never happened and discharge instructions that were not issued. We strolled the hallways again, this time with Susan using her new, wheeled walker – a stabilizing aid against vertigo and partial blindness. I learned later that the infectious disease and neurology teams had to sort out differing opinions on how to handle her anti-fungal meds (IV vs oral). While I'm grateful they have her best interests in mind, my gratitude was overcome by the letdown of leaving Susan there overnight again.
Wed 09/05/07
Susan was discharged in time for us to go home for lunch and get to her first radiation therapy at LB Memorial by 3pm. The treatment went smoothly as we prepared for the eventual side effects of localized hair loss, skin irritation and overall fatigue.
Sunday, September 2, 2007
Another hospitalization
Fri 08/24/07
Susan was in extreme pain and crying once again at midnight, a couple of hours after going to bed. I gave her valium instead of the usual vicodin to try easing her pain. Still hurting at 2am, I gave her more vicodin and noticed she felt feverish as I held her. Her temp was 102F, a sign of trouble combined with inconsolable pain. A nurse I called at UCLA said I should get her to an ER right away. I called for an ambulance when I couldn't get Susan to walk to the car – she was transported to LB Memorial.
Sat 08/25/07
The staff at LB Memorial ER gave Susan morphine for pain and conducted a series of tests, including a blood culture and a lumbar puncture (spinal tap). Even with morphine, she still had moderate pain. Her cerebrospinal fluid had a white blood cell count of 1970 – normal is 0 to 5. She was diagnosed with meningitis, given IV antibiotics, and transported by ambulance to UCLA, arriving around 3pm.
Susan was placed in an isolation room at UCLA Med Center ER as a precaution against infectious bacterial meningitis, followed by more antibiotics, blood tests and pain meds. A neurosurgeon lifted the isolation order around 7pm and admitted Susan to the 7th floor neuro unit about 9pm, then did another lumbar puncture at 11pm to test her fluid.
Sun 08/26/07
Breakfast was Susan's first meal since dinner on Friday, a welcome event. She continued on antibiotics and pain meds, and another blood culture. My sister Becky spent the afternoon visiting and had dinner in Westwood with the boys and me.
We had a unusual moment when Susan's surgeon, Linda Liau, was featured on a channel 2 news segment about the experimental vaccine we're hoping will be available to Susan. The timing was just surreal – Susan was at the hospital under treatment by the doctor who is on TV discussing the treatment she may receive.
You can watch the video at http://cbs2.com/video/?id=46462@kcbs.dayport.com&cid=71.
Mon 08/27/07
Susan had another night punctuated by pain, getting relief with vicodin and dilotid. Her blood cultures need to continue growing over 72 hours to rule out bacterial meningitis. Meningitis is inflammation of the membrane surrounding the central nervous system, and its bacterial form is serious and can be deadly. The aseptic or non-bacterial form is a mostly harmless, sometimes follows brain surgery, and usually corrects itself in 5-14 days.
She underwent an angiogram in the afternoon under general anesthesia to investigate a dissection or tear in the artery that feeds the base of the brain, a condition that may have contributed to her previous stroke and poses a risk for future strokes. We are awaiting results and the medical team's discussion of possible treatments.
Susan also had a PICC line (peripherally inserted central catheter) placed for prolonged IV access. Her right arm is unavailable for needle sticks due to risk of infection since she had a lymph node removed last year. Her left arm has been punctured so often for two months that scar tissue makes IVs a challenge. The catheter prevents the vein from collapsing, can remain up to 30 days and allows injections and blood draws without new punctures. Everyone is happy about the PICC line.
Dinner was her only meal of the day and preceded a solid night's sleep, such as it is with 2-hour check-ups for vital signs. She was still in considerable pain and received more dilotid and vicodin. Radiation and chemotherapy are on hold for now until next week.
I keep revisiting the text of Psalm 3 (above) in the words of a song our choir has sung: "Many are they increased that trouble me, many are they that rise up against me. Many are they that say of my soul, 'There is no help for him in God' – but thou O Lord are a shield for me, my glory and the lifter of my head..." The many complications of Susan's condition are starting to feel like being caught in a tornado preceding an earthquake followed by a hurricane. What's next? Hot lava? But God continues to lift our heads. Thank you, Lord.
Tue 08/28/07
Susan has been diagnosed with fungal meningitis, an uncommon form that usually occurs in people with compromised immune systems. In her case, the infection is caused by a yeast called candida albicans that is airborne, is prevalent everywhere, and likely was introduced during one of her invasive procedures or surgeries. She experienced most of its symptoms (clouded by her ongoing condition): headache, confusion, tiredness, stiff neck, irritability, and fever. I'm glad we got her hospitalized and diagnosed since its complications can be serious and deadly. She'll be treated with an antifungal IV; treatment can take 2-4 weeks as fungi are harder to get rid of than bacteria. Her hospitalization is open ended at this time.
She had another lumbar puncture this evening to analyze cerebrospinal fluid for one more baseline comparison prior to antifungal treatment.
We had some good news today – yesterday's angiogram came back negative – evidently there is no tear in the artery that feeds the brain stem. I still need to find out why they thought there was one initially; but I'm glad to have the issue resolved. Thanks to God.
Wed 08/29/07
Today was a good day as Susan experienced a dramatic lifting of meningitis symptoms while receiving anti-fungal medication. She was stronger, more alert, more energetic and in good spirits; and was able to have a bath, walk around a bit, and pass some time sitting in a chair. I enjoyed her sassy attitude. When bending her left arm too sharply caused her IV alarm to sound, she straightened her arm and told the machine to be quiet. After it stopped a moment later, she said, "See, I've got this whole thing under control."
Fri 08/31/07
Susan's hospitalization has been a see-saw experience of come-and-go pain amid diagnosis & treatment for fungal meningitis. Apparently, her body was susceptible after being on the drug decadron since late June. She's had three spinal taps in nine days to track the infection. Conflicting results this week had doctors waffling on bacterial vs fungal diagnoses while administering a shotgun of various IVs with antifungal and antibiotic medications. Her condition improved as they've narrowed the treatment to the two antifungals effective for candida albicans. The result, thankfully, has been less pain and confusion with better general orientation and mood.
The angiogram results to investigate the artery leading to her brain was negative for a dissection or tear. The spot they saw on an earlier MRA was more of a fold in the vessel. The angiogram also shows that the left fork of the artery that feeds the brain is congenitally narrow, a factor that could have led to her stroke.
We learned Susan is not eligible for the cancer vaccine clinical trial since she had breast cancer last year. Dr Liau said the trial is in pivotal phase 2, meaning there's a possibility for FDA approval prior to phase 3. Once approved, Susan can have the vaccine – that's our next hope.
During a particularly trying week attended by pain and uncertainty, the Lord has brought us to a place of providing what we need for each day. Tomorrow is out of reach and remains free of presumption. Somehow for today, we're ok.
I have enjoyed my summertime walks around the now-quiet UCLA campus, retracing my steps as a student over 20 years ago. I follow myself as a young adult among crowded lecture halls, busy pathways, and quiet study sanctuaries, tracking the images as they echo around the buildings in front of me. I was 21 when Susan and I married after second quarter finals in March of 1985. I was disconnected from student life as a married student who commuted to campus – but I was satisfied. Susan was my girl; church my fraternity; and UCLA my university. With no money in the bank, we were rich in hope.
Walking south, away from college memories and toward the medical center building, I was jarred back to the reality that my bride is lying in there with the remnants of a malignant brain tumor. Past and present collided violently in my mind as I walked. But my steps led me back to the wife I love – and we're together for another day.
Sat 09/01/07
I brought Susan a smoothie and sat with her as we watched college football on TV in her room. Being fans of the sport, we enjoyed watching the games and the sense of normal life that came with the afternoon.
Susan was in extreme pain and crying once again at midnight, a couple of hours after going to bed. I gave her valium instead of the usual vicodin to try easing her pain. Still hurting at 2am, I gave her more vicodin and noticed she felt feverish as I held her. Her temp was 102F, a sign of trouble combined with inconsolable pain. A nurse I called at UCLA said I should get her to an ER right away. I called for an ambulance when I couldn't get Susan to walk to the car – she was transported to LB Memorial.
Sat 08/25/07
The staff at LB Memorial ER gave Susan morphine for pain and conducted a series of tests, including a blood culture and a lumbar puncture (spinal tap). Even with morphine, she still had moderate pain. Her cerebrospinal fluid had a white blood cell count of 1970 – normal is 0 to 5. She was diagnosed with meningitis, given IV antibiotics, and transported by ambulance to UCLA, arriving around 3pm.
Susan was placed in an isolation room at UCLA Med Center ER as a precaution against infectious bacterial meningitis, followed by more antibiotics, blood tests and pain meds. A neurosurgeon lifted the isolation order around 7pm and admitted Susan to the 7th floor neuro unit about 9pm, then did another lumbar puncture at 11pm to test her fluid.
Sun 08/26/07
Breakfast was Susan's first meal since dinner on Friday, a welcome event. She continued on antibiotics and pain meds, and another blood culture. My sister Becky spent the afternoon visiting and had dinner in Westwood with the boys and me.
We had a unusual moment when Susan's surgeon, Linda Liau, was featured on a channel 2 news segment about the experimental vaccine we're hoping will be available to Susan. The timing was just surreal – Susan was at the hospital under treatment by the doctor who is on TV discussing the treatment she may receive.
You can watch the video at http://cbs2.com/video/?id=46462@kcbs.dayport.com&cid=71.
Mon 08/27/07
Susan had another night punctuated by pain, getting relief with vicodin and dilotid. Her blood cultures need to continue growing over 72 hours to rule out bacterial meningitis. Meningitis is inflammation of the membrane surrounding the central nervous system, and its bacterial form is serious and can be deadly. The aseptic or non-bacterial form is a mostly harmless, sometimes follows brain surgery, and usually corrects itself in 5-14 days.
She underwent an angiogram in the afternoon under general anesthesia to investigate a dissection or tear in the artery that feeds the base of the brain, a condition that may have contributed to her previous stroke and poses a risk for future strokes. We are awaiting results and the medical team's discussion of possible treatments.
Susan also had a PICC line (peripherally inserted central catheter) placed for prolonged IV access. Her right arm is unavailable for needle sticks due to risk of infection since she had a lymph node removed last year. Her left arm has been punctured so often for two months that scar tissue makes IVs a challenge. The catheter prevents the vein from collapsing, can remain up to 30 days and allows injections and blood draws without new punctures. Everyone is happy about the PICC line.
Dinner was her only meal of the day and preceded a solid night's sleep, such as it is with 2-hour check-ups for vital signs. She was still in considerable pain and received more dilotid and vicodin. Radiation and chemotherapy are on hold for now until next week.
I keep revisiting the text of Psalm 3 (above) in the words of a song our choir has sung: "Many are they increased that trouble me, many are they that rise up against me. Many are they that say of my soul, 'There is no help for him in God' – but thou O Lord are a shield for me, my glory and the lifter of my head..." The many complications of Susan's condition are starting to feel like being caught in a tornado preceding an earthquake followed by a hurricane. What's next? Hot lava? But God continues to lift our heads. Thank you, Lord.
Tue 08/28/07
Susan has been diagnosed with fungal meningitis, an uncommon form that usually occurs in people with compromised immune systems. In her case, the infection is caused by a yeast called candida albicans that is airborne, is prevalent everywhere, and likely was introduced during one of her invasive procedures or surgeries. She experienced most of its symptoms (clouded by her ongoing condition): headache, confusion, tiredness, stiff neck, irritability, and fever. I'm glad we got her hospitalized and diagnosed since its complications can be serious and deadly. She'll be treated with an antifungal IV; treatment can take 2-4 weeks as fungi are harder to get rid of than bacteria. Her hospitalization is open ended at this time.
She had another lumbar puncture this evening to analyze cerebrospinal fluid for one more baseline comparison prior to antifungal treatment.
We had some good news today – yesterday's angiogram came back negative – evidently there is no tear in the artery that feeds the brain stem. I still need to find out why they thought there was one initially; but I'm glad to have the issue resolved. Thanks to God.
Wed 08/29/07
Today was a good day as Susan experienced a dramatic lifting of meningitis symptoms while receiving anti-fungal medication. She was stronger, more alert, more energetic and in good spirits; and was able to have a bath, walk around a bit, and pass some time sitting in a chair. I enjoyed her sassy attitude. When bending her left arm too sharply caused her IV alarm to sound, she straightened her arm and told the machine to be quiet. After it stopped a moment later, she said, "See, I've got this whole thing under control."
Fri 08/31/07
Susan's hospitalization has been a see-saw experience of come-and-go pain amid diagnosis & treatment for fungal meningitis. Apparently, her body was susceptible after being on the drug decadron since late June. She's had three spinal taps in nine days to track the infection. Conflicting results this week had doctors waffling on bacterial vs fungal diagnoses while administering a shotgun of various IVs with antifungal and antibiotic medications. Her condition improved as they've narrowed the treatment to the two antifungals effective for candida albicans. The result, thankfully, has been less pain and confusion with better general orientation and mood.
The angiogram results to investigate the artery leading to her brain was negative for a dissection or tear. The spot they saw on an earlier MRA was more of a fold in the vessel. The angiogram also shows that the left fork of the artery that feeds the brain is congenitally narrow, a factor that could have led to her stroke.
We learned Susan is not eligible for the cancer vaccine clinical trial since she had breast cancer last year. Dr Liau said the trial is in pivotal phase 2, meaning there's a possibility for FDA approval prior to phase 3. Once approved, Susan can have the vaccine – that's our next hope.
During a particularly trying week attended by pain and uncertainty, the Lord has brought us to a place of providing what we need for each day. Tomorrow is out of reach and remains free of presumption. Somehow for today, we're ok.
I have enjoyed my summertime walks around the now-quiet UCLA campus, retracing my steps as a student over 20 years ago. I follow myself as a young adult among crowded lecture halls, busy pathways, and quiet study sanctuaries, tracking the images as they echo around the buildings in front of me. I was 21 when Susan and I married after second quarter finals in March of 1985. I was disconnected from student life as a married student who commuted to campus – but I was satisfied. Susan was my girl; church my fraternity; and UCLA my university. With no money in the bank, we were rich in hope.
Walking south, away from college memories and toward the medical center building, I was jarred back to the reality that my bride is lying in there with the remnants of a malignant brain tumor. Past and present collided violently in my mind as I walked. But my steps led me back to the wife I love – and we're together for another day.
Sat 09/01/07
I brought Susan a smoothie and sat with her as we watched college football on TV in her room. Being fans of the sport, we enjoyed watching the games and the sense of normal life that came with the afternoon.
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