Tue 12/25/07
After our morning gift exchange at home with our family and a delicious breakfast of Adam's famous pancakes, we remembered six months earlier when I had sat at the table with the kids the day after Susan's first surgery. I had told them their mom didn't remember them and that death had been near. With Susan with us at the table today, we celebrated the contrast between July 5th and Christmas and how far she's come. Then we spent a while giving each other verbal gifts by sharing what we appreciate about each other – these are gifts that I know will last forever.
Thu 12/27/07
We had a neuro-oncology visit at UCLA with a scheduled MRI and consultation with Dr (Leia) Nghiemphu. Since it's a digital scan, we're able to review the images right away with the doctor. Dr Leia was concerned about increased brain swelling this time as compared to Susan's October scan and was ready to recommend a different chemotherapy drug to combat tumor growth. However, when she witnessed how well Susan has progressed in alertness, memory, and strength, she reasoned that this was Susan's first MRI since going off the anti-swelling steroid decadron, and this may be more a normal condition for her. Had Susan's symptoms not improved or worsened, there would be more cause for alarm. To be safe, Dr Leia will have Susan return in one month (instead of the usual two) for a comparative MRI.
She advised us to take a few precautions for our Hawaii trip, but otherwise encouraged us to enjoy the journey and time with family. She raised Susan's dose of temodar chemotherapy to its maximum and agreed to have us wait until we return home instead of starting treatment on the cruise.
Friday, December 28, 2007
Sunday, December 23, 2007
More improvement and beautiful gifts
Mon 12/18/07
Beginning with a grocery store trip on Friday with p-t Tracy, some prep work early this afternoon with o-t Kim, and some more prep work with speech therapist (s-t) Connie, Susan prepared dinner for the first time since her brain tumor diagnosis. She cut and marinated some chicken and made rice; later we heated some refries, made a salad, and had delicious chicken tacos. It was a great boost for Susan and a fine example of her therapists' teamwork. We're thankful.
Susan has had periodic abdominal pain the past few days that's become more persistent and sharp, and had a low-grade fever this evening. I'm watching her closely and may need to have her shunt evaluated. We're praying she improves so we can avoid another ER visit or hospital stay.
We read again in our Streams in the Desert book about Rom 8:28 and God working all things together for good for those who love him. The devotional reading says the very things that would otherwise drag the Christian down to defeat or cause us to give up actually bring us closer to God, and can even make us better off than we were before. Susan and I agree. We're still walking our journey, but we treasure the way God is growing and changing us, preparing us for what He has in the future. In one respect, God's methods make no sense to us – but somehow, we need the trial of tough times to unleash our potential for good character and the transformation we so desperately need.
Sat 12/22/07
Our minor alarm this week with Susan's abdominal pain and mild fever subsided as her symptoms improved. I think she was feeling some effects of greater exertion with all of her new therapies. We are grateful that we avoided another hospital saga and are on track to enjoy the church and family events of Christmas. We're all looking forward with great anticipation to our 7-day family cruise in Hawaii, leaving Sat 12/29 for a tropical New Year.
Susan received prayer and encouragement on Thu from our friend Wendi Carpenter who is here with her family to visit from Michigan. We discovered the Holy Spirit had led Wendi and I separately to pray for Susan to receive the gift of healing that is healing not just for her but a wellspring of healing for others also. Susan now has a sense that she need not wait to minister healing to others until she is healed, but that she may respond to the Lord's leading even now. As the mystery of this season of life continues to unfold, we are open to God using Susan as a witness to His grace and an agent of His power. We don't know what that will look like exactly, but we're open. We want to listen, learn, and obey.
Last night we arrived home to find a large jar of coins and bills on the porch tied with ribbon to a book called "Christmas Jars." Given anonymously, evidently the book's theme is Christmas generosity along the lines of "It's a Wonderful Life" and "Pay it Forward," encouraging us to share with one another. When I returned from this morning's shopping trip to buy groceries for the week and for Christmas dinner, I had spent an unusually high amount at the store: $232.33. By then, Susan, Austin, and Adam had sorted and counted the cash, amounting to $224.76. That means we spent under eight dollars out of pocket for the family's Christmas rib-roast dinner, with my mom, grandmother and siblings included. It's all so unbelievable. Our God is great – we give thanks for a merry Christmas.
Beginning with a grocery store trip on Friday with p-t Tracy, some prep work early this afternoon with o-t Kim, and some more prep work with speech therapist (s-t) Connie, Susan prepared dinner for the first time since her brain tumor diagnosis. She cut and marinated some chicken and made rice; later we heated some refries, made a salad, and had delicious chicken tacos. It was a great boost for Susan and a fine example of her therapists' teamwork. We're thankful.
Susan has had periodic abdominal pain the past few days that's become more persistent and sharp, and had a low-grade fever this evening. I'm watching her closely and may need to have her shunt evaluated. We're praying she improves so we can avoid another ER visit or hospital stay.
We read again in our Streams in the Desert book about Rom 8:28 and God working all things together for good for those who love him. The devotional reading says the very things that would otherwise drag the Christian down to defeat or cause us to give up actually bring us closer to God, and can even make us better off than we were before. Susan and I agree. We're still walking our journey, but we treasure the way God is growing and changing us, preparing us for what He has in the future. In one respect, God's methods make no sense to us – but somehow, we need the trial of tough times to unleash our potential for good character and the transformation we so desperately need.
Sat 12/22/07
Our minor alarm this week with Susan's abdominal pain and mild fever subsided as her symptoms improved. I think she was feeling some effects of greater exertion with all of her new therapies. We are grateful that we avoided another hospital saga and are on track to enjoy the church and family events of Christmas. We're all looking forward with great anticipation to our 7-day family cruise in Hawaii, leaving Sat 12/29 for a tropical New Year.
Susan received prayer and encouragement on Thu from our friend Wendi Carpenter who is here with her family to visit from Michigan. We discovered the Holy Spirit had led Wendi and I separately to pray for Susan to receive the gift of healing that is healing not just for her but a wellspring of healing for others also. Susan now has a sense that she need not wait to minister healing to others until she is healed, but that she may respond to the Lord's leading even now. As the mystery of this season of life continues to unfold, we are open to God using Susan as a witness to His grace and an agent of His power. We don't know what that will look like exactly, but we're open. We want to listen, learn, and obey.
Last night we arrived home to find a large jar of coins and bills on the porch tied with ribbon to a book called "Christmas Jars." Given anonymously, evidently the book's theme is Christmas generosity along the lines of "It's a Wonderful Life" and "Pay it Forward," encouraging us to share with one another. When I returned from this morning's shopping trip to buy groceries for the week and for Christmas dinner, I had spent an unusually high amount at the store: $232.33. By then, Susan, Austin, and Adam had sorted and counted the cash, amounting to $224.76. That means we spent under eight dollars out of pocket for the family's Christmas rib-roast dinner, with my mom, grandmother and siblings included. It's all so unbelievable. Our God is great – we give thanks for a merry Christmas.
Saturday, December 15, 2007
Progress, therapy; a friend loses his battle with brain cancer
Sat 12/15/07
One thing that hasn't changed since the onset of Susan's brain tumor treatment is the busy-ness of December, hence the delay since my last update. I'm pleased to report the past two weeks have been marked by terrific progress on all fronts in Susan's condition, in strength, alertness, memory, initiation, stamina, and so on. Having the lumbar shunt implanted made a dramatic impact – I think hydrocephalus had been a factor for a while. With hopes of continued momentum against tumor growth, the future is looking brighter.
We got back on track with Rehab Without Walls and have had a series of evaluation and therapy visits this month. Her therapists are a good fit for Susan as a motivated and well-functioning patient, and are poised help her push through her barriers toward independence. Physical therapist (p-t) Tracy took Susan to shop at Trader Joe's yesterday after she compiled the grocery list. Among the items she bought were ingredients to make Tuesday's dinner with Kim, her occupational therapist (o-t). Also, Susan has taken the challenge to shed her walker in favor of a cane for greater mobility and freedom. These ladies care about seeing their patients improve and are truly impressed with Susan's advances since October. I believe Sue will make great strides on this program.
Susan's vision loss is her most troubling symptom since it prevents her from communicating – seeing people's eyes and facial expressions and reading anything but extra-large print. We pray for a breakthrough.
With deep sadness, we learned our friend Larry Litherland passed away yesterday after being overcome by the brain tumor that was diagnosed earlier this year. Susan and I were joined ironically with Larry and Laura on parallel journeys we did not expect or want. Larry's brain surgery occurred several weeks before we found out about Susan's tumor; and with tumors on the left frontal lobe, they had matching incisions. We would see them at LB Memorial Radiation Oncology when Larry and Susan had radiation therapy together for a while, and we'd compare notes and encourage & pray for each other over the months. The couple we had known earlier as our friend Greg's parents became dear to us as we shared the hardships and uncertainty of life-altering illness. Our hearts break for Laura as she grieves the loss of her high school sweetheart, and we join her in gratitude that Larry is with the Lord and had a peaceful passing. We lift the Litherland family in prayer and sympathy.
One thing that hasn't changed since the onset of Susan's brain tumor treatment is the busy-ness of December, hence the delay since my last update. I'm pleased to report the past two weeks have been marked by terrific progress on all fronts in Susan's condition, in strength, alertness, memory, initiation, stamina, and so on. Having the lumbar shunt implanted made a dramatic impact – I think hydrocephalus had been a factor for a while. With hopes of continued momentum against tumor growth, the future is looking brighter.
We got back on track with Rehab Without Walls and have had a series of evaluation and therapy visits this month. Her therapists are a good fit for Susan as a motivated and well-functioning patient, and are poised help her push through her barriers toward independence. Physical therapist (p-t) Tracy took Susan to shop at Trader Joe's yesterday after she compiled the grocery list. Among the items she bought were ingredients to make Tuesday's dinner with Kim, her occupational therapist (o-t). Also, Susan has taken the challenge to shed her walker in favor of a cane for greater mobility and freedom. These ladies care about seeing their patients improve and are truly impressed with Susan's advances since October. I believe Sue will make great strides on this program.
Susan's vision loss is her most troubling symptom since it prevents her from communicating – seeing people's eyes and facial expressions and reading anything but extra-large print. We pray for a breakthrough.
With deep sadness, we learned our friend Larry Litherland passed away yesterday after being overcome by the brain tumor that was diagnosed earlier this year. Susan and I were joined ironically with Larry and Laura on parallel journeys we did not expect or want. Larry's brain surgery occurred several weeks before we found out about Susan's tumor; and with tumors on the left frontal lobe, they had matching incisions. We would see them at LB Memorial Radiation Oncology when Larry and Susan had radiation therapy together for a while, and we'd compare notes and encourage & pray for each other over the months. The couple we had known earlier as our friend Greg's parents became dear to us as we shared the hardships and uncertainty of life-altering illness. Our hearts break for Laura as she grieves the loss of her high school sweetheart, and we join her in gratitude that Larry is with the Lord and had a peaceful passing. We lift the Litherland family in prayer and sympathy.
Friday, November 30, 2007
Discharged, Thanksgiving, hospitalized, discharged
Wed 11/21/07
Susan was discharged from UCLA Med Center today after her 14-day hospitalization and will be taking antifungal medication indefinitely to counter meningitis. She's having mild to moderate pain from surgery to implant her lumbar shunt; but is otherwise strong and alert – and so glad to be home. We are so grateful and encouraged to have her home for Thanksgiving, an answer to our prayers. Next week, she'll resume her evaluation meetings next week with her in-home therapists, and have a scheduled visit with her neuro-oncologist.
I came across the Father's Day card Susan gave me in June, just days before the whole brain tumor event erupted. The text of the card says, "For My Husband – Today is for celebrating the wonderful father you are...and the terrific husband you continue to be (she writes "and you keep getting better!). Happy Father's Day with Love." Then she writes,
Aside from the poignancy of her words these months later, I am struck by just how much I love my wife. She's an exceptional person in so many ways, and the perfect companion for me. I love the quality of her character, and how even with all she's been through (and couldn't have known on Father's Day), she still has made up her mind to get back up to speed. What a woman.
Our Pastor Ken asked me to share in 3-4 minutes at our Thanksgiving services last week why I'm thankful to God. It was a powerful worship service and a privilege to be among God's people. Here are my comments.
Susan was discharged from UCLA Med Center today after her 14-day hospitalization and will be taking antifungal medication indefinitely to counter meningitis. She's having mild to moderate pain from surgery to implant her lumbar shunt; but is otherwise strong and alert – and so glad to be home. We are so grateful and encouraged to have her home for Thanksgiving, an answer to our prayers. Next week, she'll resume her evaluation meetings next week with her in-home therapists, and have a scheduled visit with her neuro-oncologist.
I came across the Father's Day card Susan gave me in June, just days before the whole brain tumor event erupted. The text of the card says, "For My Husband – Today is for celebrating the wonderful father you are...and the terrific husband you continue to be (she writes "and you keep getting better!). Happy Father's Day with Love." Then she writes,
Mike, Over the course of this last year, life has seemed to change in our home.
I'm feeling upset with my housekeeping, but I don't seem to have the energy to
overcome it all. I have made up my mind to do my best to get back up to speed –
especially once we figure out this headache thing. I just want you to know how
thankful I am for who you are, and I appreciate you more than I could ever
explain. Things will improve, I promise! In the meantime, thank you for all you
do! Susan"
Aside from the poignancy of her words these months later, I am struck by just how much I love my wife. She's an exceptional person in so many ways, and the perfect companion for me. I love the quality of her character, and how even with all she's been through (and couldn't have known on Father's Day), she still has made up her mind to get back up to speed. What a woman.
Our Pastor Ken asked me to share in 3-4 minutes at our Thanksgiving services last week why I'm thankful to God. It was a powerful worship service and a privilege to be among God's people. Here are my comments.
Thanksgiving 2007
Susan was treated for breast cancer in 2006, an event that allowed us to revisit our priorities and draw us closer to God and to each other. We are thankful for that outcome. Since July of this year, she’s being treated for a malignant brain tumor, an event that has turned our lives upside down and left us wondering what is to come. In the span of only a few months, every area of our lives has been affected, and everything is different now. But in the midst of such upheaval, God has not changed. He is still God, he is still on his throne, and he is still good. He is still the Lord
and the giver of life. Life is his gift; and we thank him for it. The Lord is my shepherd; I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul. He guides me in paths of righteousness for His name’s sake.
Learning that Susan’s type of brain tumor, called grade IV glioblastoma multiforme, does not offer a long life expectancy from a medical perspective, I realized this summer we may not grow old together like we thought we would. Then I realized that’s
always been true – anything can happen to any of us at any time, and sometimes
it does. We all are mortal. Eventually, either Susan or I will have to lay the
other down. God does not guarantee a long life, or a painless life, or a trouble-free life. What He does promise, though, is His presence. God Himself is with us – always. He will never leave us. It’s not in his nature. So we thank God for his presence. Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me. Your rod and Your staff, they comfort me.
With life broken down to such a basic level, we are aware that God meets our needs each day – physically, mentally, financially, emotionally, and spiritually. The church, his body, is an awesome display of his compassion and provision for us. I don’t know how it works, but it seems whenever we have had a need, someone from church has been there. You are amazing people! Individuals and families have provided groceries, dinners, help with bills, gas cards, housecleaning, yard work, and relief
outings for our kids. We have received hundreds of greeting cards and emails,
and countless prayers that have carried us along. There are over 15 ladies who
volunteer to take turns on weekday shifts to be with Susan and help her with
therapy, allowing me time to work. Could we ever count the value of what you
have given? And could we ever thank you enough for it? You have been a lifeline
for us; and we thank you, and we thank God for you. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.
While we know that a malignant brain tumor is a menacing threat, we also know that with God, all things are possible. Glioblastoma is a name – but Jesus is the name above all names. The one thing that gets us through, the x-factor, the difference maker, is another gift – our hope in Christ. We stand with the three Hebrews who faced the fire and said “Our God is able to save us, he will save us; and if he doesn’t – we still trust him.” While we pursue the Lord for healing, he is meeting us in the
mystery of affliction with this amazing notion that in spite of our circumstances,
everything is ok. Even in the face of death, everything is ok. We have life in the Lord, and nothing can touch us. We are grateful for this hope, because without it, we would have crumbled a long time ago. Surely goodness and mercy will follow me all the days of my life, and I will dwell in the house of the Lord forever.
Wed 11/28/07
I brought Susan back to UCLA Med Center on Monday afternoon with another low-grade fever, persistent headache, and fatigue. She evidently has a urinary tract infection (now that's a new one) and is being treated with antibiotics. Meanwhile, the neuro staff are making adjustments to the valve in her l-p shunt to correct the flow of spinal fluid that drains into her body, a delicate balance. It looks like this hospital visit will be pretty routine and short-lived, thankfully. She may be discharged tomorrow.
Fri 11/30/07
Susan is home again after only a three-day hospital stay, thankfully. While early tests indicated she might have a urinary tract infection, the more complete tests were negative. Also, after several days of trying to adjust the magnetic valve in her lumbar shunt, the task proved too elusive for the neuro team, and they left well enough alone when Susan's symptoms improved. So, Susan had no new infection, and her fever, headache, and nausea gradually went away. The neuro team believes she may have caught a virus or something over the Thanksgiving holiday. At any rate, we're glad she's home.
Tuesday, November 20, 2007
Surgeries for both of us
Tue 11/13/07
Susan will receive her antibiotic and antifungal treatment for a full ten days (through Saturday), after which the infectious disease team may release her to have her shunts implanted. We hope she'll be home for Thanksgiving. She continued to make good progress, was moved to a semi-private room on the neuro ward, and began doing some physical therapy and taking a walk or two. It pleases me greatly to hear her speak of "achieving my goals for the day."
Here's a fine new term for me: "laparoscopic cholecystectomy," the name of the surgery I'll have on Friday to remove my gall bladder. (Perhaps I'm destined to write a medical encyclopedia from experience. Go ahead – ask me about the common bile duct.) I met with the man behind the knife today, Kent Azaren MD, a kind and experienced general surgeon who took time to educate me about the procedure and why I need it. It's an outpatient affair that will send me home after post-op to lay low for a week. Bring it on.
Mon 11/19/07
After making continued progress through the weekend against infection, Susan underwent surgery today to have a shunt implanted. Rather than draining from her brain (a ventricular shunt), her neurosurgeon opted to drain from her lower spine into her abdomen (a lumbo-peritoneal shunt). The effect is the same – allowing her body to have the proper amount of fluid flowing around the brain and spine, and preventing the harmful pressure of fluid build-up. The procedure took about 3-4 hours under general anesthesia, and thankfully was successful and lacked complications. See the "Selected Links" page for more info about CSF shunts. She is resting this evening with treatment for moderate pain. Her UCLA medical team will evaluate her progress tomorrow for possible discharge on Wednesday – we're hoping for that.
Meanwhile, I had successful outpatient surgery on Friday to remove my gallbladder. Someone asked where I was going to have the operation done. I said "near my liver." When I say "outpatient," it was more like "drive-thru." You know, show your insurance card at the first window and make sure you ask for ketchup and check your order at the second window before you pull away. "You want anesthesia with that?" I now have four holes in my belly, I think the target kept squishing out of the way so he kept poking. Actually, Dr Kent Azaren and the pros at the Surgery Center of Long Beach did a phenomenal job with an extremely high level of care. It was altogether such a pleasant experience, I'm trying to think of something else I can have cut out just so I can go back. They even have warm blankets. I've had a typical amount of post-op pain that is nothing like a gall bladder attack and has diminished each day. I'm thankful to put this chapter to rest.
As Susan's latest hospitalization grinds on and I recover from gallbladder surgery at home, we miss each other greatly. I'm resigned to the idea that she'll need to stay at UCLA over the Thanksgiving holiday – and if she's released earlier, it will be a gift. It's more important that she comes home when she's ready, when she's well enough. Meanwhile, the Sovereign God is ever faithful and is bigger than all our problems and every situation. He has all of us in his hands and will work out his good plans for us in his time.
Susan will receive her antibiotic and antifungal treatment for a full ten days (through Saturday), after which the infectious disease team may release her to have her shunts implanted. We hope she'll be home for Thanksgiving. She continued to make good progress, was moved to a semi-private room on the neuro ward, and began doing some physical therapy and taking a walk or two. It pleases me greatly to hear her speak of "achieving my goals for the day."
Here's a fine new term for me: "laparoscopic cholecystectomy," the name of the surgery I'll have on Friday to remove my gall bladder. (Perhaps I'm destined to write a medical encyclopedia from experience. Go ahead – ask me about the common bile duct.) I met with the man behind the knife today, Kent Azaren MD, a kind and experienced general surgeon who took time to educate me about the procedure and why I need it. It's an outpatient affair that will send me home after post-op to lay low for a week. Bring it on.
Mon 11/19/07
After making continued progress through the weekend against infection, Susan underwent surgery today to have a shunt implanted. Rather than draining from her brain (a ventricular shunt), her neurosurgeon opted to drain from her lower spine into her abdomen (a lumbo-peritoneal shunt). The effect is the same – allowing her body to have the proper amount of fluid flowing around the brain and spine, and preventing the harmful pressure of fluid build-up. The procedure took about 3-4 hours under general anesthesia, and thankfully was successful and lacked complications. See the "Selected Links" page for more info about CSF shunts. She is resting this evening with treatment for moderate pain. Her UCLA medical team will evaluate her progress tomorrow for possible discharge on Wednesday – we're hoping for that.
Meanwhile, I had successful outpatient surgery on Friday to remove my gallbladder. Someone asked where I was going to have the operation done. I said "near my liver." When I say "outpatient," it was more like "drive-thru." You know, show your insurance card at the first window and make sure you ask for ketchup and check your order at the second window before you pull away. "You want anesthesia with that?" I now have four holes in my belly, I think the target kept squishing out of the way so he kept poking. Actually, Dr Kent Azaren and the pros at the Surgery Center of Long Beach did a phenomenal job with an extremely high level of care. It was altogether such a pleasant experience, I'm trying to think of something else I can have cut out just so I can go back. They even have warm blankets. I've had a typical amount of post-op pain that is nothing like a gall bladder attack and has diminished each day. I'm thankful to put this chapter to rest.
As Susan's latest hospitalization grinds on and I recover from gallbladder surgery at home, we miss each other greatly. I'm resigned to the idea that she'll need to stay at UCLA over the Thanksgiving holiday – and if she's released earlier, it will be a gift. It's more important that she comes home when she's ready, when she's well enough. Meanwhile, the Sovereign God is ever faithful and is bigger than all our problems and every situation. He has all of us in his hands and will work out his good plans for us in his time.
Tuesday, November 13, 2007
A longer stay at UCLA
Fri 11/10/07
Austin and Adam joined me this afternoon to visit Susan, taking turns to meet the two-at-a-time limit in the NTCU. She had vomited in the am, but rested later and was able to eat lunch. I was thankful to be there for first-hand information when the neuro team made rounds at 4pm. Since fungi grow more slowly than bacteria, they take longer to eliminate. Even the initial fungal culture from Wed will not have developed until Sat or Sun. As a result, Susan will need to be hospitalized for at least a week or more until the infection is negative and the shunts can be placed. She's not happy about the idea, but she understands it's necessary.
Susan had the PICC line installed yesterday, replacing the small-volume line they had placed in her foot. IVs are a continual problem for her since she's limited to her left side after breast cancer treatment and right-side lymph node removal. Her left arm is full of scar tissue after five hospital stays and dozens of blood draws, so the PICC line really helps.
Sun 11/11/07
With frequent nausea and vomiting, fatigue and confusion, this was a difficult weekend for Susan. Her doctors have not confirmed absolutely what meningitis organism she's fighting since her blood and spinal fluid cultures from Wed/Thu are still growing, so she's on a shotgun approach of antifungals and antibiotics like last time. However, it appears this time one of the antibiotics is causing her nausea and requires premedication to prevent it. We hope it provides relief.
Mon 11/12/07
We thank God that Susan has improved and had her best day yet – no nausea, with greater strength and alertness. In a development that is confusing for me, she has tested negative for infection. This is good news along with her general progress; but it doesn't explain why the meningitis returned. If the Lord wants to heal it outright, we'll take it, and anticipate the doctors' upcoming reports.
Another beautiful realization came to rest with us today. God never promised we would not have troubles, nor did He guarantee he would take our troubles away – but He has given us something that is greater, His faithful assurance that He is always with us. It's better to go through tough times with God than have it easy and never know Him.
Austin and Adam joined me this afternoon to visit Susan, taking turns to meet the two-at-a-time limit in the NTCU. She had vomited in the am, but rested later and was able to eat lunch. I was thankful to be there for first-hand information when the neuro team made rounds at 4pm. Since fungi grow more slowly than bacteria, they take longer to eliminate. Even the initial fungal culture from Wed will not have developed until Sat or Sun. As a result, Susan will need to be hospitalized for at least a week or more until the infection is negative and the shunts can be placed. She's not happy about the idea, but she understands it's necessary.
Susan had the PICC line installed yesterday, replacing the small-volume line they had placed in her foot. IVs are a continual problem for her since she's limited to her left side after breast cancer treatment and right-side lymph node removal. Her left arm is full of scar tissue after five hospital stays and dozens of blood draws, so the PICC line really helps.
Sun 11/11/07
With frequent nausea and vomiting, fatigue and confusion, this was a difficult weekend for Susan. Her doctors have not confirmed absolutely what meningitis organism she's fighting since her blood and spinal fluid cultures from Wed/Thu are still growing, so she's on a shotgun approach of antifungals and antibiotics like last time. However, it appears this time one of the antibiotics is causing her nausea and requires premedication to prevent it. We hope it provides relief.
Mon 11/12/07
We thank God that Susan has improved and had her best day yet – no nausea, with greater strength and alertness. In a development that is confusing for me, she has tested negative for infection. This is good news along with her general progress; but it doesn't explain why the meningitis returned. If the Lord wants to heal it outright, we'll take it, and anticipate the doctors' upcoming reports.
Another beautiful realization came to rest with us today. God never promised we would not have troubles, nor did He guarantee he would take our troubles away – but He has given us something that is greater, His faithful assurance that He is always with us. It's better to go through tough times with God than have it easy and never know Him.
Friday, November 9, 2007
Yet another hospitalization
Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.
Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.
Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.
We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.
Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.
Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.
Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.
Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.
We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.
Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.
Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.
Wednesday, October 31, 2007
More progress
Fri 10/26/07
We met for an evaluation with a new therapist whose company's in-home treatments integrate physical, occupational, and speech components within one organization and focuses on each patient's goals for rehabilitation. This method makes sense to me and sounds promising.
Sun 10/28/07
Susan has been stronger, more alert, and less fatigued since she finished radiation and chemotherapy. Today we went to church at 9am, and had a family birthday party for Lexie's 18th and Austin's 16th at noon. At 4pm, Susan joined me at practice for our Holiday Chorale at church as I joined with the choir after missing their earlier rehearsals. She watched and listened as we sang, and got absolutely smothered with love afterwards. It was a great day.
Mon 10/29/07
Tomorrow we visit UCLA for a follow-up visit with Susan's neurosurgeon and Wednesday with her neuro-oncologist along with an MRI. Meanwhile, we rest in peace.
I made a sincere apology to Susan tonight after dinner. Adam was invited for dinner at the Johnson's, but came home later and joined us at the table during our meal. When we finished, Susan reminded Adam that he needed to empty the dishwasher like I had asked him to do earlier. As he was leaving for the kitchen, I realized we might miss an opportunity and said to him, "Actually, why don't you sit down for a few more minutes so we can read our devotional?" Susan was insulted that I had spoken to Adam directly and not to her, and told me that everyone speaks as though she's not there – but she can hear everything and, basically said she's tired of being ignored when she's right in the room. While the boys looked on with big eyes, I apologized right away and said I understand, that it would have been better to have responded to her, and I didn't mean to insult her. Then we got on with our devotional.
I apologized again later before Susan went to sleep, saying there was a time when she wasn't able to understand what was going on very well, and so the family adjusted for it by talking among ourselves even when she was in the room. She just wasn't able to participate. so we had adapted around her. For months as we've visited medical personnel, I've had to tell her story for her since either she had no original memory of what happened or she'd forget what she'd learned about it. I've been careful to acknowledge her as much as possible, often recounting events to her for the doctor to hear instead of vice versa. Anyway, just as I realized recently that now it's better for Susan to make her own sandwich with my help than to have me make it for her, tonight she let me know it's time to unwind our adaptation of speaking over and around her. Later as we talked, she said she hoped she didn't challenge me to strongly in front of the kids – I said I was the one apologizing right now, and she was right in what she said. Then we affirmed our care for each other and prayed together before bed. All told, Susan has gotten just a little more sassy again lately, and I'm glad about it. There's a reason Tinkerbell is her favorite Disney character.
Tonight's reading in Streams in the Desert from Ephesians 2:6 relates how we are seated with Christ in the heavenly realms, and it struck deeply with me. If God's people are seated with Christ (and we are), God intends for us to stay there – always – not just on Sundays, and not just when we migrate back around for greater intimacy with Him. Too often, we give in to worry, anxiety, and fear over our circumstances. If the eye of a hurricane is so peaceful as to allow a child to sleep in it, there's a place of peace and rest in the Lord right next to life's swirling winds. I thought of the phrase "rest in peace," and it took on new meaning tonight. Those words, most closely associated with death, are actually words of life for us. While Susan and I don't want to be without each other, we're not afraid of death, so we will rest in peace before we die. Right now.
Tue 10/30/07
We met with Susan's neurosurgeon Linda Liau today for a post-op exam at UCLA. Dr Liau said Susan's incision site has healed well after two resections and is pleased with her progress in the two months since surgery, commenting on her obvious improvements and greater alertness since our last visit. She said the worst of Susan's treatments is over – the dual radiation & chemo is usually the most draining part of treatment. Actually, it wasn't any worse than any of her other complications, for which we're thankful. Dr Liau also told us to plan on monthly 5-day chemo treatments with periodic MRIs for the next year or so in hopes of keeping her tumor at bay.
Regarding the brain cancer vaccine Dr Liau is working on, she's confident Susan will be eligible for the vaccine in one form or another in the coming years. Perhaps the current version would be FDA-approved, or once she is breast-cancer free for three years in 2009, she would be eligible for one of the improved versions in a clinical trial.
We will be lifting Dr Liau in prayer, who had recent surgery herself for breast cancer. It was her mother's own breast cancer and metastatic brain cancer that led to her death and inspired Dr Liau to her work as a malignant tumor brain surgeon. She said they discovered it early, and like Susan, she won't need radiation or chemotherapy, so we were encouraged for her. We pray for her complete healing for a long and joyful life.
Wed 10/31/07
We had a truly encouraging MRI result at today's visit to UCLA and Susan's neuro-oncologist. One bit of tumor across the midline that was inaccessible to surgery is gone, and another area nearby appears not to have grown at all! We thank God who is almighty and good, and we're grateful to everyone who has been praying.
Susan is back on temodar chemotherapy, a new routine that will be five days each month for at least the next year or two. Her dose this time is a little more than twice as before, and will be increased again if she tolerates the higher dosage. She'll also have monthly blood work and bi-monthly MRIs as Dr Nghiemphu will monitor her progress.
We met for an evaluation with a new therapist whose company's in-home treatments integrate physical, occupational, and speech components within one organization and focuses on each patient's goals for rehabilitation. This method makes sense to me and sounds promising.
Sun 10/28/07
Susan has been stronger, more alert, and less fatigued since she finished radiation and chemotherapy. Today we went to church at 9am, and had a family birthday party for Lexie's 18th and Austin's 16th at noon. At 4pm, Susan joined me at practice for our Holiday Chorale at church as I joined with the choir after missing their earlier rehearsals. She watched and listened as we sang, and got absolutely smothered with love afterwards. It was a great day.
Mon 10/29/07
Tomorrow we visit UCLA for a follow-up visit with Susan's neurosurgeon and Wednesday with her neuro-oncologist along with an MRI. Meanwhile, we rest in peace.
I made a sincere apology to Susan tonight after dinner. Adam was invited for dinner at the Johnson's, but came home later and joined us at the table during our meal. When we finished, Susan reminded Adam that he needed to empty the dishwasher like I had asked him to do earlier. As he was leaving for the kitchen, I realized we might miss an opportunity and said to him, "Actually, why don't you sit down for a few more minutes so we can read our devotional?" Susan was insulted that I had spoken to Adam directly and not to her, and told me that everyone speaks as though she's not there – but she can hear everything and, basically said she's tired of being ignored when she's right in the room. While the boys looked on with big eyes, I apologized right away and said I understand, that it would have been better to have responded to her, and I didn't mean to insult her. Then we got on with our devotional.
I apologized again later before Susan went to sleep, saying there was a time when she wasn't able to understand what was going on very well, and so the family adjusted for it by talking among ourselves even when she was in the room. She just wasn't able to participate. so we had adapted around her. For months as we've visited medical personnel, I've had to tell her story for her since either she had no original memory of what happened or she'd forget what she'd learned about it. I've been careful to acknowledge her as much as possible, often recounting events to her for the doctor to hear instead of vice versa. Anyway, just as I realized recently that now it's better for Susan to make her own sandwich with my help than to have me make it for her, tonight she let me know it's time to unwind our adaptation of speaking over and around her. Later as we talked, she said she hoped she didn't challenge me to strongly in front of the kids – I said I was the one apologizing right now, and she was right in what she said. Then we affirmed our care for each other and prayed together before bed. All told, Susan has gotten just a little more sassy again lately, and I'm glad about it. There's a reason Tinkerbell is her favorite Disney character.
Tonight's reading in Streams in the Desert from Ephesians 2:6 relates how we are seated with Christ in the heavenly realms, and it struck deeply with me. If God's people are seated with Christ (and we are), God intends for us to stay there – always – not just on Sundays, and not just when we migrate back around for greater intimacy with Him. Too often, we give in to worry, anxiety, and fear over our circumstances. If the eye of a hurricane is so peaceful as to allow a child to sleep in it, there's a place of peace and rest in the Lord right next to life's swirling winds. I thought of the phrase "rest in peace," and it took on new meaning tonight. Those words, most closely associated with death, are actually words of life for us. While Susan and I don't want to be without each other, we're not afraid of death, so we will rest in peace before we die. Right now.
Tue 10/30/07
We met with Susan's neurosurgeon Linda Liau today for a post-op exam at UCLA. Dr Liau said Susan's incision site has healed well after two resections and is pleased with her progress in the two months since surgery, commenting on her obvious improvements and greater alertness since our last visit. She said the worst of Susan's treatments is over – the dual radiation & chemo is usually the most draining part of treatment. Actually, it wasn't any worse than any of her other complications, for which we're thankful. Dr Liau also told us to plan on monthly 5-day chemo treatments with periodic MRIs for the next year or so in hopes of keeping her tumor at bay.
Regarding the brain cancer vaccine Dr Liau is working on, she's confident Susan will be eligible for the vaccine in one form or another in the coming years. Perhaps the current version would be FDA-approved, or once she is breast-cancer free for three years in 2009, she would be eligible for one of the improved versions in a clinical trial.
We will be lifting Dr Liau in prayer, who had recent surgery herself for breast cancer. It was her mother's own breast cancer and metastatic brain cancer that led to her death and inspired Dr Liau to her work as a malignant tumor brain surgeon. She said they discovered it early, and like Susan, she won't need radiation or chemotherapy, so we were encouraged for her. We pray for her complete healing for a long and joyful life.
Wed 10/31/07
We had a truly encouraging MRI result at today's visit to UCLA and Susan's neuro-oncologist. One bit of tumor across the midline that was inaccessible to surgery is gone, and another area nearby appears not to have grown at all! We thank God who is almighty and good, and we're grateful to everyone who has been praying.
Susan is back on temodar chemotherapy, a new routine that will be five days each month for at least the next year or two. Her dose this time is a little more than twice as before, and will be increased again if she tolerates the higher dosage. She'll also have monthly blood work and bi-monthly MRIs as Dr Nghiemphu will monitor her progress.
Wednesday, October 24, 2007
Stable and improving
Tue 10/02/07
Aside from her brain swelling episode a couple of weeks ago, Susan's status has remained stable since her most recent hospital discharge in early September. After one week on oral chemotherapy, the most consistent side effect has been periodic joint and muscle pain. Potential nausea is abated with zofran, a med she takes an hour before her nightly chemo pills. We're thankful for these relatively few complications. She's had a couple of speech therapy sessions along with daily homework – cognitive exercises to add to her physical therapy routine. I'm adjusting to Susan's early-bird schedule. She's often down for the night by 8:30 or 9pm, and lately has been awake, alert and ready for whatever at 4:30 or 5am. If she's up, then I need to be up, so I need to get to sleep early as well, or I'll be zonked the next day. Our days are busy with at-home therapies, radiation treatments, doctor visits, and kids' activities.
I'm getting back to the office more often for a span of hours to keep the irons hot, though I'm still officially on leave. We accomplish it all with the help of our amazing friends and family who attend Susan during the day, take her to radiation and lab visits; provide us with meals, and whisk our sons to and from church. We are rich with friends – gazillionaires.
Two things have remained persistent since our lives were so drastically altered in late June – the gravity of Susan's illness and the faithfulness of God. I've mentioned the disappointment that emerges following a missed opportunity for divine healing. We had the build-up before surgery filled with faith, prayer, and a pregnant opportunity for a God-glorifying miracle. When it didn't happen, we felt the let down at the collision of our will and God's, and the grief of accepting that though He could have healed just then, he did not. Life is a mystery. In the fog of the unknown, we celebrate that God doesn't change: His love is overwhelming, His favor is upon us, His power is complete, His will perfect. While the medical outlook for grade IV glioblastoma offers limited life expectancy, God will heal her if He chooses. Meanwhile, we continually experience the miracle of love given by friends and family who share all manner of resources with us. This week, another set of Arco gift cards arrived to fill our gas tanks for the better part of a month. The anonymous giver just wants us to know we're loved and prayed for – thank you, Lord.
Wed 10/03/07
We met today with a rep from the CA State Dept of Rehabilitation who was referred to us by the So Cal College of Optometry. The DOR provides equipment and reimbursement for low-vision therapy patients like Susan who are disabled and making effort to return to work eventually. We are thankful for yet another valuable resource.
Fri 10/05/07
Our friend Alecia discovered how significant Susan's Christian life is in relating to the world she's rediscovering. One of her speech therapy exercises is word deduction, where three clues lead you to determine what object they're describing, like "petals, stem, fragrance = flower." Susan got stumped on "desert, hump, animal." When Alecia added "wise men," Susan answered correctly – "camel." Faith runs deep.
Sun 10/14/07
Susan has completed 27 of 30 radiation treatments and will conclude her radiation/chemo combination on Wed 10/17. She mostly has held up well under it, except for growing fatigue, muscle weakness, confusion, and hair loss. We recognize and are thankful that the side effects of oral temodar are easier than other chemotherapies – yet it's hard to see them happen to a loved one at any level. I prepared myself for the idea of Susan losing all her hair, and was quite relieved to learn that hair loss is not as certain for temodar patients. Still, the entire radiation/chemo combo has left her with a sizable bald spot on the left front of her head where the radiation hits; and her hair has been thinning overall for a while now. While I wonder how much more hair she'll lose, we'll avoid doing the big buzz while we can – our friend and Susan's hairstylist, Jennifer Daws, gave her a cute bob-style cut a few weeks ago that we'd like to keep.
We visited an infectious disease specialist at UCLA this week to find out just how Notre Dame could have beaten their football team – I mean to follow up on the fungal infection that caused her meningitis. Her current radiation and chemo treatments would cloud the results of a spinal tap, so we'll hold off on that test. However, Susan did stay on the fluconozole anti-fungal course twice as long as usual to really nail the candida infection. We agreed with the doctor to suspend the fluconozole and watch her symptoms – so far, so good.
She's been making progress in her speech therapy visits and homework. Susan has to work extra hard since much of her memory & cognitive exercises involve reading, quite a challenge for her. She strains to make out letters that form words and hold those words in mind while she deciphers new ones – she continues to get better at it. She commands her deep vocabulary well as that bright intellect struggles to emerge. She'll continue speech therapy as the pace of low-vision therapy picks up and chemo/radiation wanes.
Our life continues to be marked by profound contrasts between the way it is now and the way it was four months ago. My time is more stretched than ever while I balance care for Susan with kids, household and work. I'm adjusting to the fact that the volume of time I spent at church previously as an elder, singer, and worship leader was possible because Susan handled the home front. Now, during this season, we attend the 9am service and head home so Susan can rest. It's all...different. (Saturdays are among the toughest for me to manage because of doing & supervising yard work, handling household projects, meal planning, grocery shopping, and cooking. Thanks to God, we have the gift of housecleaners and occasional meals.)
Susan is at once improving with her memory and also is frequently confused. She is my beautiful wife and also a brain cancer patient with its physical effects. She has periods of strength and lucidness and some days is more generally "out of it." As for God, He is ever faithful in the present, but immensely silent about the future. He is allowing crushing circumstances, but sustains us with the real knowledge of His goodness and of the hope He holds out for us. As we talked recently about these times, Susan and I agreed the "x" factor, the difference-maker, the thing that somehow makes it all ok – is the gift of hope. We know it's a hope that does not disappoint.
Tue 10/23/07
I'm pleased to report Susan's condition is stable and improving, with little news or developments over the past week. This quiet spell is welcome. With radiation and chemotherapy treatments ending 10/17, she has had a bit more energy. Her medical symptoms are minimal and she no longer needs the volume of meds she did a month ago. Her antifungals are done; and she finished with her round of temodar chemotherapy, she's off the anti-nausea and antibiotic meds that go with it. Although she always seems to have a low-grade headache, she doesn't have the extreme head pain she did 4-6 weeks ago, so she hasn't needed a vicodin for days at a time. We are thankful for her progress.
We had an evaluation visit at home with an experienced low-vision therapist referred to us by the College of Optometry. She was impressed with Susan's condition and confident in her ability to help Susan learn adaptive vision techniques for greater overall function. We will set up regular visits after she coordinates the details with the Dept of Rehabilitation.
Ever the hard-working patient, Susan does a routine of daily physical and speech therapy exercises with the help of her caregivers. She's usually ready for a late-morning nap after her therapies, then she's rested and ready for lunch and any afternoon appointments.
God is awesome. He demonstrates his love for us daily in many ways, not the least of which are the loving acts of Susan's caregivers. There are 18 ladies from our church who have volunteered to be with Susan in morning and afternoon shifts on weekdays and have become no less than lifeblood for our family. They faithfully visit each day to help with her therapies, make lunch, and sometimes even help with housework. I'm sure they didn't realize that helping Susan do her exercises means she would make them do them with her! The ladies also free my time to get tasks done at home and get to the office. Their physical presence and their emotional and spiritual support are a vital part of Susan's rehabilitation. Each sister in Christ brings her own style of care and nurturing – they make up a beautiful team. If we could somehow repay them for their time and energy (an absurd idea), we would. But theirs is a gift, these faithful acts of loving kindness. And amazingly, what we receive as meeting an immense need, we often hear is the highlight of their week. Needless to say, we're grateful to them and to Dorothy Romberg for organizing the effort.
I received another such gift on Saturday as Doug Palmer, Alvie Chavarria, Ulysses Gallegos and Brent Koble showed up on Saturday with power tools and strong backs to make our gardens look like more like Disneyland. They gave me a huge gift of time in doing my semi-annual trimming that would have been a two-week project for me, and they freed me to get my weekly shopping done early. I guess I need to be aware of what I write on these pages – Doug saw my recent comments about Saturdays being hectic and stressful. Although I was just blowing off steam as I often do, my brothers zeroed in on a need and met it. Big time. Thanks, guys.
Like I said, God is awesome. As I consider the Lord's work in our lives and how He does for us and how we do for each other, it's a wondrous thing. It's often the same thing, that our acts of love are the direct hand of God. Since Jesus left the earth and now reigns in heaven with the Father, He intends that we be His body on earth, guided and empowered by the Holy Spirit – the Body of Christ. As Christian believers understand and take our role seriously, we are literally God's instruments of ministry to each other and to those who don't yet know Him. This is yet another divine mystery as God works His will among people. Somehow, even a small, ordinary desire of a normal believer, like the desire to do something kind, can be God-breathed and have a tremendous impact in God's kingdom. It's just awesome.
Aside from her brain swelling episode a couple of weeks ago, Susan's status has remained stable since her most recent hospital discharge in early September. After one week on oral chemotherapy, the most consistent side effect has been periodic joint and muscle pain. Potential nausea is abated with zofran, a med she takes an hour before her nightly chemo pills. We're thankful for these relatively few complications. She's had a couple of speech therapy sessions along with daily homework – cognitive exercises to add to her physical therapy routine. I'm adjusting to Susan's early-bird schedule. She's often down for the night by 8:30 or 9pm, and lately has been awake, alert and ready for whatever at 4:30 or 5am. If she's up, then I need to be up, so I need to get to sleep early as well, or I'll be zonked the next day. Our days are busy with at-home therapies, radiation treatments, doctor visits, and kids' activities.
I'm getting back to the office more often for a span of hours to keep the irons hot, though I'm still officially on leave. We accomplish it all with the help of our amazing friends and family who attend Susan during the day, take her to radiation and lab visits; provide us with meals, and whisk our sons to and from church. We are rich with friends – gazillionaires.
Two things have remained persistent since our lives were so drastically altered in late June – the gravity of Susan's illness and the faithfulness of God. I've mentioned the disappointment that emerges following a missed opportunity for divine healing. We had the build-up before surgery filled with faith, prayer, and a pregnant opportunity for a God-glorifying miracle. When it didn't happen, we felt the let down at the collision of our will and God's, and the grief of accepting that though He could have healed just then, he did not. Life is a mystery. In the fog of the unknown, we celebrate that God doesn't change: His love is overwhelming, His favor is upon us, His power is complete, His will perfect. While the medical outlook for grade IV glioblastoma offers limited life expectancy, God will heal her if He chooses. Meanwhile, we continually experience the miracle of love given by friends and family who share all manner of resources with us. This week, another set of Arco gift cards arrived to fill our gas tanks for the better part of a month. The anonymous giver just wants us to know we're loved and prayed for – thank you, Lord.
Wed 10/03/07
We met today with a rep from the CA State Dept of Rehabilitation who was referred to us by the So Cal College of Optometry. The DOR provides equipment and reimbursement for low-vision therapy patients like Susan who are disabled and making effort to return to work eventually. We are thankful for yet another valuable resource.
Fri 10/05/07
Our friend Alecia discovered how significant Susan's Christian life is in relating to the world she's rediscovering. One of her speech therapy exercises is word deduction, where three clues lead you to determine what object they're describing, like "petals, stem, fragrance = flower." Susan got stumped on "desert, hump, animal." When Alecia added "wise men," Susan answered correctly – "camel." Faith runs deep.
Sun 10/14/07
Susan has completed 27 of 30 radiation treatments and will conclude her radiation/chemo combination on Wed 10/17. She mostly has held up well under it, except for growing fatigue, muscle weakness, confusion, and hair loss. We recognize and are thankful that the side effects of oral temodar are easier than other chemotherapies – yet it's hard to see them happen to a loved one at any level. I prepared myself for the idea of Susan losing all her hair, and was quite relieved to learn that hair loss is not as certain for temodar patients. Still, the entire radiation/chemo combo has left her with a sizable bald spot on the left front of her head where the radiation hits; and her hair has been thinning overall for a while now. While I wonder how much more hair she'll lose, we'll avoid doing the big buzz while we can – our friend and Susan's hairstylist, Jennifer Daws, gave her a cute bob-style cut a few weeks ago that we'd like to keep.
We visited an infectious disease specialist at UCLA this week to find out just how Notre Dame could have beaten their football team – I mean to follow up on the fungal infection that caused her meningitis. Her current radiation and chemo treatments would cloud the results of a spinal tap, so we'll hold off on that test. However, Susan did stay on the fluconozole anti-fungal course twice as long as usual to really nail the candida infection. We agreed with the doctor to suspend the fluconozole and watch her symptoms – so far, so good.
She's been making progress in her speech therapy visits and homework. Susan has to work extra hard since much of her memory & cognitive exercises involve reading, quite a challenge for her. She strains to make out letters that form words and hold those words in mind while she deciphers new ones – she continues to get better at it. She commands her deep vocabulary well as that bright intellect struggles to emerge. She'll continue speech therapy as the pace of low-vision therapy picks up and chemo/radiation wanes.
Our life continues to be marked by profound contrasts between the way it is now and the way it was four months ago. My time is more stretched than ever while I balance care for Susan with kids, household and work. I'm adjusting to the fact that the volume of time I spent at church previously as an elder, singer, and worship leader was possible because Susan handled the home front. Now, during this season, we attend the 9am service and head home so Susan can rest. It's all...different. (Saturdays are among the toughest for me to manage because of doing & supervising yard work, handling household projects, meal planning, grocery shopping, and cooking. Thanks to God, we have the gift of housecleaners and occasional meals.)
Susan is at once improving with her memory and also is frequently confused. She is my beautiful wife and also a brain cancer patient with its physical effects. She has periods of strength and lucidness and some days is more generally "out of it." As for God, He is ever faithful in the present, but immensely silent about the future. He is allowing crushing circumstances, but sustains us with the real knowledge of His goodness and of the hope He holds out for us. As we talked recently about these times, Susan and I agreed the "x" factor, the difference-maker, the thing that somehow makes it all ok – is the gift of hope. We know it's a hope that does not disappoint.
Tue 10/23/07
I'm pleased to report Susan's condition is stable and improving, with little news or developments over the past week. This quiet spell is welcome. With radiation and chemotherapy treatments ending 10/17, she has had a bit more energy. Her medical symptoms are minimal and she no longer needs the volume of meds she did a month ago. Her antifungals are done; and she finished with her round of temodar chemotherapy, she's off the anti-nausea and antibiotic meds that go with it. Although she always seems to have a low-grade headache, she doesn't have the extreme head pain she did 4-6 weeks ago, so she hasn't needed a vicodin for days at a time. We are thankful for her progress.
We had an evaluation visit at home with an experienced low-vision therapist referred to us by the College of Optometry. She was impressed with Susan's condition and confident in her ability to help Susan learn adaptive vision techniques for greater overall function. We will set up regular visits after she coordinates the details with the Dept of Rehabilitation.
Ever the hard-working patient, Susan does a routine of daily physical and speech therapy exercises with the help of her caregivers. She's usually ready for a late-morning nap after her therapies, then she's rested and ready for lunch and any afternoon appointments.
God is awesome. He demonstrates his love for us daily in many ways, not the least of which are the loving acts of Susan's caregivers. There are 18 ladies from our church who have volunteered to be with Susan in morning and afternoon shifts on weekdays and have become no less than lifeblood for our family. They faithfully visit each day to help with her therapies, make lunch, and sometimes even help with housework. I'm sure they didn't realize that helping Susan do her exercises means she would make them do them with her! The ladies also free my time to get tasks done at home and get to the office. Their physical presence and their emotional and spiritual support are a vital part of Susan's rehabilitation. Each sister in Christ brings her own style of care and nurturing – they make up a beautiful team. If we could somehow repay them for their time and energy (an absurd idea), we would. But theirs is a gift, these faithful acts of loving kindness. And amazingly, what we receive as meeting an immense need, we often hear is the highlight of their week. Needless to say, we're grateful to them and to Dorothy Romberg for organizing the effort.
I received another such gift on Saturday as Doug Palmer, Alvie Chavarria, Ulysses Gallegos and Brent Koble showed up on Saturday with power tools and strong backs to make our gardens look like more like Disneyland. They gave me a huge gift of time in doing my semi-annual trimming that would have been a two-week project for me, and they freed me to get my weekly shopping done early. I guess I need to be aware of what I write on these pages – Doug saw my recent comments about Saturdays being hectic and stressful. Although I was just blowing off steam as I often do, my brothers zeroed in on a need and met it. Big time. Thanks, guys.
Like I said, God is awesome. As I consider the Lord's work in our lives and how He does for us and how we do for each other, it's a wondrous thing. It's often the same thing, that our acts of love are the direct hand of God. Since Jesus left the earth and now reigns in heaven with the Father, He intends that we be His body on earth, guided and empowered by the Holy Spirit – the Body of Christ. As Christian believers understand and take our role seriously, we are literally God's instruments of ministry to each other and to those who don't yet know Him. This is yet another divine mystery as God works His will among people. Somehow, even a small, ordinary desire of a normal believer, like the desire to do something kind, can be God-breathed and have a tremendous impact in God's kingdom. It's just awesome.
Friday, September 28, 2007
More medical visits
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.
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.
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.
Friday, August 24, 2007
Difficult adjustments on the journey
Mon 08/20/07
Confusion & fear during the night – as Susan visited the bathroom around 4am. I was alarmed not that she took a while, but that she came out weeping and scared, saying she forgot what to do. As I comforted her, I learned she did not forget how to do some basis tasks, but somehow thought she needed to pay for supplies before she used them. What a sweetheart – she didn't want to break any rules. I assured her that she can trust her own judgment and that her conscience will help her do the right thing.
We read in our devotional about Jacob wresting with God in Genesis 32:24. His experience transformed him as he became an overcomer during crisis, a time when God "pressed down on Jacob to press his old life from him...If God has called us to His highest and best, each of us will have a time of crisis, when all our resources will fail and when we face either ruin or something better than we have ever dreamed." We rely on God for His help.
Thu 08/23/07
Susan needs a lot of rest these days. Her periods of sleep typically are followed by waves of intense pain, evidently caused as increased blood flow to her head while lying down floods the nerve endings that are re-attaching near her incision. We're counting on this state passing soon. She's usually good for several periods of good energy during the day.
Wednesday was a landmark day for suture removal and a neuro-oncology meeting at UCLA followed by CT simulation in Long Beach. Getting staples & stitches removed means she can have an honest hair-washing on Friday, her first in 20 days. Today's appointments precede Susan's chemotherapy and radiation treatments that will begin next week, occurring simultaneously since her tumor is grade IV glioblastoma. The day's too-full schedule prevented usual rest and made Susan extremely weak by the end of the day – she could barely lift her feet to get out of the car.
Susan's six-week, Mon-Fri radiation treatments will happen at LB Memorial's radiation oncology unit under Dr Puthawala, who will coordinating treatments under UCLA's Dr Nghiemphu. Advanced radiation technology targets tumor tissue while avoiding vital areas, while side effects range from mild to severe skin burning and peeling, swelling (edema) and nerve damage.
Her 42-day chemotherapy is a commonly-prescribed drug called temodar (temozolomide) taken orally each day. It's effective at penetrating the blood-brain barrier, while common side effects include nausea, weakness and fatigue, dehydration, and low white blood cell counts, which increases the risk of infection.
We continue to wait on the Lord for healing and strength during our difficult journey. It feels like we're settling in for the long-haul, slogging it out in the "new normal" life with its uncertain outcome. Pain and fatigue are daily struggles for Susan along with the annoyance of memory deficits and mild to moderate confusion. Even so, we know we are being carried along in God's gracious hands with the support of he Holy Spirit and upon the prayers of countless caring people. I thank God for grace as my strength and devotion waver and I realize once again that I am really just a fragile sinner. Hope sustains us in that we know everything will be ok. Life is hard – but God is good.
Confusion & fear during the night – as Susan visited the bathroom around 4am. I was alarmed not that she took a while, but that she came out weeping and scared, saying she forgot what to do. As I comforted her, I learned she did not forget how to do some basis tasks, but somehow thought she needed to pay for supplies before she used them. What a sweetheart – she didn't want to break any rules. I assured her that she can trust her own judgment and that her conscience will help her do the right thing.
We read in our devotional about Jacob wresting with God in Genesis 32:24. His experience transformed him as he became an overcomer during crisis, a time when God "pressed down on Jacob to press his old life from him...If God has called us to His highest and best, each of us will have a time of crisis, when all our resources will fail and when we face either ruin or something better than we have ever dreamed." We rely on God for His help.
Thu 08/23/07
Susan needs a lot of rest these days. Her periods of sleep typically are followed by waves of intense pain, evidently caused as increased blood flow to her head while lying down floods the nerve endings that are re-attaching near her incision. We're counting on this state passing soon. She's usually good for several periods of good energy during the day.
Wednesday was a landmark day for suture removal and a neuro-oncology meeting at UCLA followed by CT simulation in Long Beach. Getting staples & stitches removed means she can have an honest hair-washing on Friday, her first in 20 days. Today's appointments precede Susan's chemotherapy and radiation treatments that will begin next week, occurring simultaneously since her tumor is grade IV glioblastoma. The day's too-full schedule prevented usual rest and made Susan extremely weak by the end of the day – she could barely lift her feet to get out of the car.
Susan's six-week, Mon-Fri radiation treatments will happen at LB Memorial's radiation oncology unit under Dr Puthawala, who will coordinating treatments under UCLA's Dr Nghiemphu. Advanced radiation technology targets tumor tissue while avoiding vital areas, while side effects range from mild to severe skin burning and peeling, swelling (edema) and nerve damage.
Her 42-day chemotherapy is a commonly-prescribed drug called temodar (temozolomide) taken orally each day. It's effective at penetrating the blood-brain barrier, while common side effects include nausea, weakness and fatigue, dehydration, and low white blood cell counts, which increases the risk of infection.
We continue to wait on the Lord for healing and strength during our difficult journey. It feels like we're settling in for the long-haul, slogging it out in the "new normal" life with its uncertain outcome. Pain and fatigue are daily struggles for Susan along with the annoyance of memory deficits and mild to moderate confusion. Even so, we know we are being carried along in God's gracious hands with the support of he Holy Spirit and upon the prayers of countless caring people. I thank God for grace as my strength and devotion waver and I realize once again that I am really just a fragile sinner. Hope sustains us in that we know everything will be ok. Life is hard – but God is good.
Monday, August 20, 2007
Preparing for radiation, compassion at the DMV
Fri 08/17/07
We had an appointment with Susan's radiation oncologist, Dr Puthawala and his team at LB Memorial. She'll return next week to re-do the CT simulation that is needed for radiation therapy. The simulation is used to plan her treatments with Susan's brain scan, the oncologist's prescription, and the physicist's programming to fine-tune the equipment before radiation begins. Her plans from July need to be redone following her 2nd surgery.
Compassion at the DMV! We decided to get a temporary handicap placard since Susan qualifies due to loss of sight and needs to walk with assistance. At the DMV (you know, staffed by robotic agents weighed down with red tape), I left Susan in the car to enter the labyrinth, and discovered at length that she'd need to cancel her driver's license in order to receive a placard for visual impairment. That makes sense – but also involves a weighty decision. I went out to discuss it with her and allow her to decide for herself. She knows she can't drive right now and can re-apply when her sight returns, so she agreed to cancel it. When I brought her inside to sign forms, a clerk showed true compassion in expressing sorrow for our situation – he apologized repeatedly. Then, as we waited in a long line for Susan's state ID card photo, he left his station (and his customers), and led us to the front of the line. The people we bumped were gracious and understanding also. Thanks to Russell at the Long Beach DMV – a caring human being who softened a bureaucracy.
Sun 08/19/07
Susan has had recurring pain in her scalp as nerve endings re-attach near her incision. Vicodin helps.
We attended some family events involving both sides of our family, a Romberg wedding reception on Saturday and a Joeckel wedding on Sunday. We enjoyed the social atmosphere, love & support.
We had an appointment with Susan's radiation oncologist, Dr Puthawala and his team at LB Memorial. She'll return next week to re-do the CT simulation that is needed for radiation therapy. The simulation is used to plan her treatments with Susan's brain scan, the oncologist's prescription, and the physicist's programming to fine-tune the equipment before radiation begins. Her plans from July need to be redone following her 2nd surgery.
Compassion at the DMV! We decided to get a temporary handicap placard since Susan qualifies due to loss of sight and needs to walk with assistance. At the DMV (you know, staffed by robotic agents weighed down with red tape), I left Susan in the car to enter the labyrinth, and discovered at length that she'd need to cancel her driver's license in order to receive a placard for visual impairment. That makes sense – but also involves a weighty decision. I went out to discuss it with her and allow her to decide for herself. She knows she can't drive right now and can re-apply when her sight returns, so she agreed to cancel it. When I brought her inside to sign forms, a clerk showed true compassion in expressing sorrow for our situation – he apologized repeatedly. Then, as we waited in a long line for Susan's state ID card photo, he left his station (and his customers), and led us to the front of the line. The people we bumped were gracious and understanding also. Thanks to Russell at the Long Beach DMV – a caring human being who softened a bureaucracy.
Sun 08/19/07
Susan has had recurring pain in her scalp as nerve endings re-attach near her incision. Vicodin helps.
We attended some family events involving both sides of our family, a Romberg wedding reception on Saturday and a Joeckel wedding on Sunday. We enjoyed the social atmosphere, love & support.
Friday, August 17, 2007
Hospitalization & discharge at UCLA
Tue 08/14/07
A recent entry in Susan's journal: I'm encouraged as I look forward to what God has to show me about his love and faithfulness!
Wed 08/15/07
Susan said, "With all the prayers by all these people I should become someone like Mrs. Billy Graham by now. But we know God does things differently than we think. Look at what He did with Jesus, and how He had to die. He was not just humiliated, He was rejected."
Susan's journal: God continues to teach me about my commitment and responsibility, first to Him, then to others. I pray for grace to follow His commands and divinely love His people.
Thu 08/16/07
Susan has had several other tests during this hospitalization focusing on a possible 2nd stroke and the source of pain: an MRA (magnetic resonance angiography) of brain and neck, an ECG (electrocardiogram) with cardiac ultrasound, and a CT (computed tomography) angioplasty. These were used to analyze her circulatory system around the heart and brain without being invasive – the results showed normal arteries and blood flow with no plaque or blockage. Thanks to God.
Regarding stroke, there is a small area of restricted blood flow near the mid-brain that was not evident on a previous brain MRI, "downstream" from the stroke area in her occipital lobe from 07/03/07. It could be the result of a new event, or may have been there since July. It's small enough to have been missed on previous MRIs and small enough not to pose a problem. It was not likely the cause of Susan's pain this week and obviously was an important issue to understand and rule out. She's on low-dose aspirin for stroke prevention.
Regarding pain, doctors believe Susan was tapered too quickly from decadron, a powerful steroid that counters brain swelling. Most patients are on it several weeks prior to surgery and benefit from a 3-day taper. Susan had been on it for about 6 weeks prior to her 2nd surgery; so the normal taper schedule resulted in a swelling rebound with intense pain. She's back on decadron with a 4-week taper and doing better.
Regarding tumor, here's the really good news: Dr Liau took out about 95% of it. I've learned to be cautious with these estimates; but she got almost all of it on the left side, leaving only the small inoperable portion that had crossed the midline to the right. The goal is accomplished – less tumor means better outcome of radiation & chemotherapy.
Susan was discharged on Thursday and is home again resting comfortably with medications for anti-inflammation, anti-seizure and pain. She's in good spirits, and is getting pretty good again at deadpan sarcasm. Before we left the hospital, she remarked about "The Price Is Right" on TV: "Now there's a real low point in a person's life when they don't spin the wheel around completely. Humiliated on national TV. And I think I've got problems."
Here are some of Dr Liau's note from surgery on 08/06.
A recent entry in Susan's journal: I'm encouraged as I look forward to what God has to show me about his love and faithfulness!
Wed 08/15/07
Susan said, "With all the prayers by all these people I should become someone like Mrs. Billy Graham by now. But we know God does things differently than we think. Look at what He did with Jesus, and how He had to die. He was not just humiliated, He was rejected."
Susan's journal: God continues to teach me about my commitment and responsibility, first to Him, then to others. I pray for grace to follow His commands and divinely love His people.
Thu 08/16/07
Susan has had several other tests during this hospitalization focusing on a possible 2nd stroke and the source of pain: an MRA (magnetic resonance angiography) of brain and neck, an ECG (electrocardiogram) with cardiac ultrasound, and a CT (computed tomography) angioplasty. These were used to analyze her circulatory system around the heart and brain without being invasive – the results showed normal arteries and blood flow with no plaque or blockage. Thanks to God.
Regarding stroke, there is a small area of restricted blood flow near the mid-brain that was not evident on a previous brain MRI, "downstream" from the stroke area in her occipital lobe from 07/03/07. It could be the result of a new event, or may have been there since July. It's small enough to have been missed on previous MRIs and small enough not to pose a problem. It was not likely the cause of Susan's pain this week and obviously was an important issue to understand and rule out. She's on low-dose aspirin for stroke prevention.
Regarding pain, doctors believe Susan was tapered too quickly from decadron, a powerful steroid that counters brain swelling. Most patients are on it several weeks prior to surgery and benefit from a 3-day taper. Susan had been on it for about 6 weeks prior to her 2nd surgery; so the normal taper schedule resulted in a swelling rebound with intense pain. She's back on decadron with a 4-week taper and doing better.
Regarding tumor, here's the really good news: Dr Liau took out about 95% of it. I've learned to be cautious with these estimates; but she got almost all of it on the left side, leaving only the small inoperable portion that had crossed the midline to the right. The goal is accomplished – less tumor means better outcome of radiation & chemotherapy.
Susan was discharged on Thursday and is home again resting comfortably with medications for anti-inflammation, anti-seizure and pain. She's in good spirits, and is getting pretty good again at deadpan sarcasm. Before we left the hospital, she remarked about "The Price Is Right" on TV: "Now there's a real low point in a person's life when they don't spin the wheel around completely. Humiliated on national TV. And I think I've got problems."
Here are some of Dr Liau's note from surgery on 08/06.
- Pre-Op Diagnosis: Left frontal brain tumor; Post-Op Diagnosis: Left frontal glioblastoma multiforme
- Operation: Left frontal craniotomy with resection of primary brain
- Complexity: This was the case of high complexity given that the patient had already had previous surgery for her left frontal brain tumor. There was significant amount of scar tissue from the patient's previous surgeries as well as subfalcine herniation of the tumor across the midline. The tumor itself was noted to be very vascular; and this combined with its location just millimeters away from eloquent language cortex made this a very challenging case of high complexity. This case took an extra 2 hours.
- The BrainLAB intra-operative navigational instrument was registered using anatomical and surface landmarks...The brain was noted to be quite swollen due to compression from underlying brain tumor...gross tumor was encountered which was noted to be necrotic, grayish purple, and very vascular...tumor tissue within the left frontal lobe was clearly abnormal by virtue of its color, consistency, and texture were carefully resected...The intra-operative MRI scan showed a large left frontal resection cavity, with gross total removal of the enhancing tumor in the left frontal lobe. There was a small amount of residual tumor crossing the midline to the right, but it was felt that this area of tumor was too deep to be resected safely. There was no evidence of any bleeding, infarct, or any other intra-operative complications.
We celebrate God and give thanks that so much tumor was removed without complications or deficit to Susan, a direct answer to prayer. The fact that tumor was so easy to identify from its abnormal appearance is a marvel. We truly are grateful to Dr Liau for her excellence and care, and we thank God that he made the advantages of UCLA's technology available to Susan.
Tuesday, August 14, 2007
Complications
Mon 08/13/07
Susan's pain increased somewhat each day on Sat & Sun along with greater fatigue. Her pain eased with Vicodin; and she had more frequent, longer naps than before.
She awoke at 2:30a with severe pain, crying, asking why it was happening. I gave her Vicodin and called UCLA Med Center. I thought the fact that we had weaned her off an anti-inflammatory called Decadron might have resulted in more brain edema (swelling). While that's not clear, the resident neurosurgeon on duty suggested she come in for another MRI.
When a 2nd Vicodin didn't relieve Susan's pain, we left for UCLA at 4:00a. They gave her morphine in the ER which took care of pain and allowed her to rest. She had a CT scan and an MRI during the morning and was admitted to the 7th floor neuroscience unit about 5:00p.
Thankfully, the scans showed no bleeding or severe swelling. However, they did reveal Susan had a sub-acute or mild stroke in the middle of her brain. Although not a full stroke with the classic symptoms, blood supply was cut off to some degree. She had several neurology exams as the team wants to rule out a cause other than cancer or swelling. She is slightly more confused about her general environment and what's going on.
Susan remains under evaluation for the causes of pain and stroke with treatment to follow.
While we continue to navigate the difficulties of Susan's situation, I am reminded that lamentation is the most powerful form of worship. Here is what the prophet Habbukuk has to say:
Lord, have mercy on us.
Susan's pain increased somewhat each day on Sat & Sun along with greater fatigue. Her pain eased with Vicodin; and she had more frequent, longer naps than before.
She awoke at 2:30a with severe pain, crying, asking why it was happening. I gave her Vicodin and called UCLA Med Center. I thought the fact that we had weaned her off an anti-inflammatory called Decadron might have resulted in more brain edema (swelling). While that's not clear, the resident neurosurgeon on duty suggested she come in for another MRI.
When a 2nd Vicodin didn't relieve Susan's pain, we left for UCLA at 4:00a. They gave her morphine in the ER which took care of pain and allowed her to rest. She had a CT scan and an MRI during the morning and was admitted to the 7th floor neuroscience unit about 5:00p.
Thankfully, the scans showed no bleeding or severe swelling. However, they did reveal Susan had a sub-acute or mild stroke in the middle of her brain. Although not a full stroke with the classic symptoms, blood supply was cut off to some degree. She had several neurology exams as the team wants to rule out a cause other than cancer or swelling. She is slightly more confused about her general environment and what's going on.
Susan remains under evaluation for the causes of pain and stroke with treatment to follow.
While we continue to navigate the difficulties of Susan's situation, I am reminded that lamentation is the most powerful form of worship. Here is what the prophet Habbukuk has to say:
Though the fig tree does not bud and there are no grapes on
the vines, though the olive crop fails and the fields produce no food, though
there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in
the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength;
he makes my feet like the feet of a deer, he enables me to go on the heights.
(Hab 3:17-19)
Lord, have mercy on us.
Monday, August 13, 2007
Resting
Fri 08/10/07
Susan is resting comfortably at home and sleeping a lot. I'm having the kids remember that even though she's at home, she's still a brain surgery patient who needs rest, needs help walking, and needs 24-hour supervision. They're great helpers and are doing their best to keep the noise down and the house clean.
Susan's dizziness seems to be more pronounced than last week. She's had vertigo since her first surgery – everything spins from left to right and seems tilted. It feels to her like a normal floor surface is inclined, so it's hard for her to keep her balance. We pray for relief.
It's time to admit I've been grumbling to myself this week in disappointment that God did not simply remove Susan's tumor in a miraculous act. I know He's able to heal and I fully expected Him to do so, which is the posture we're supposed to have. We're praying – everyone's praying – fervently. What more can we do? Nothing.
I'll accept that it's normal to feel let down and remember these circumstances are not centered on my feelings. Overall, Susan is having a remarkable post-op recovery. I am thankful for skilled medical specialists, for a smooth surgical procedure, and for Susan's improving condition. I'm really thankful she's home.
I happened to see our friends Jerry & Sheryl Vos at the grocery store last night, where we pondered God's sovereignty and the mystery of His will. We agreed that it's good He's in charge because He really knows what He's doing. If we could somehow make Him answer every prayer of ours just the way WE wanted Him to, we would mess up His perfect plans – plans that often include suffering and that are for our ultimate good. Now is the time to swallow hard and continue trusting our loving Father in heaven. As we held hands in Pavilions and Jerry prayed, I knew the love God provides for us in the Body of Christ. That's enough for now.
Sun 08/12/07
Psalm 3 has brought me comfort. Here is The Message version.
Susan is resting comfortably at home and sleeping a lot. I'm having the kids remember that even though she's at home, she's still a brain surgery patient who needs rest, needs help walking, and needs 24-hour supervision. They're great helpers and are doing their best to keep the noise down and the house clean.
Susan's dizziness seems to be more pronounced than last week. She's had vertigo since her first surgery – everything spins from left to right and seems tilted. It feels to her like a normal floor surface is inclined, so it's hard for her to keep her balance. We pray for relief.
It's time to admit I've been grumbling to myself this week in disappointment that God did not simply remove Susan's tumor in a miraculous act. I know He's able to heal and I fully expected Him to do so, which is the posture we're supposed to have. We're praying – everyone's praying – fervently. What more can we do? Nothing.
I'll accept that it's normal to feel let down and remember these circumstances are not centered on my feelings. Overall, Susan is having a remarkable post-op recovery. I am thankful for skilled medical specialists, for a smooth surgical procedure, and for Susan's improving condition. I'm really thankful she's home.
I happened to see our friends Jerry & Sheryl Vos at the grocery store last night, where we pondered God's sovereignty and the mystery of His will. We agreed that it's good He's in charge because He really knows what He's doing. If we could somehow make Him answer every prayer of ours just the way WE wanted Him to, we would mess up His perfect plans – plans that often include suffering and that are for our ultimate good. Now is the time to swallow hard and continue trusting our loving Father in heaven. As we held hands in Pavilions and Jerry prayed, I knew the love God provides for us in the Body of Christ. That's enough for now.
Sun 08/12/07
Psalm 3 has brought me comfort. Here is The Message version.
God! Look! Enemies past counting! Enemies sprouting like mushrooms, mobs of them all around me, roaring their mockery: "Hah! No help for him from God!"
But you, God, shield me on all sides; You ground my feet, you lift my head high; with all my might I shout up to God, His answers thunder from the holy mountain.
I stretch myself out. I sleep. Then I'm up again—rested, tall and steady, fearless before the enemy mobs coming at me from all sides.
Up, God! My God, help me! Slap their faces, first this cheek, then the other, Your fist hard in their teeth!
Real help comes from God. Your blessing clothes your people!
Friday, August 10, 2007
Improvement, great progress, and discharge
Tue 08/07/07
After improving conditions and vital signs, Susan was moved from ICU to a regular room on the neurological ward less than 20 hours after surgery. It really helps that she didn't need an intracranial catheter this time to monitor pressure on the brain and drain fluids. In fact, she's almost disconnected entirely but for the standard IV and etc.
Susan has a large, helmet-like bandage on her head, unlike the taped-over incision in July, and has had remarkably little swelling or bruising on her face. Her spirits are good – we're grateful for smooth progress.
Wed 08/08/07
My visits are more limited and less vigil-like than last month due to the UCLA drive time. I have less interaction with medical staff and more distance from the flow of Susan's daily treatment. Still, all goes well. She's comfortable and remarkably upbeat considering it's post-op day 2 and last time she was still in ICU and was pretty well out of it.
She'll have physical and occupational therapy exams early tomorrow with the possibility of being discharged (already!). The medical staff knows she'll have better rest and be more comfortable at home, and doesn't really need hospitalization as long as her condition is stable.
Thu 08/09/07
It's amazing – Susan was released today on the 3rd day after surgery! The staff gave me detailed instructions for her care at home and what trouble signs to look for along with prescriptions for meds and outpatient & home therapy. She has a cane to help her stay balanced while she walks. It's good to have her home so soon.
After improving conditions and vital signs, Susan was moved from ICU to a regular room on the neurological ward less than 20 hours after surgery. It really helps that she didn't need an intracranial catheter this time to monitor pressure on the brain and drain fluids. In fact, she's almost disconnected entirely but for the standard IV and etc.
Susan has a large, helmet-like bandage on her head, unlike the taped-over incision in July, and has had remarkably little swelling or bruising on her face. Her spirits are good – we're grateful for smooth progress.
Wed 08/08/07
My visits are more limited and less vigil-like than last month due to the UCLA drive time. I have less interaction with medical staff and more distance from the flow of Susan's daily treatment. Still, all goes well. She's comfortable and remarkably upbeat considering it's post-op day 2 and last time she was still in ICU and was pretty well out of it.
She'll have physical and occupational therapy exams early tomorrow with the possibility of being discharged (already!). The medical staff knows she'll have better rest and be more comfortable at home, and doesn't really need hospitalization as long as her condition is stable.
Thu 08/09/07
It's amazing – Susan was released today on the 3rd day after surgery! The staff gave me detailed instructions for her care at home and what trouble signs to look for along with prescriptions for meds and outpatient & home therapy. She has a cane to help her stay balanced while she walks. It's good to have her home so soon.
Tuesday, August 7, 2007
A second craniotomy
Mon 08/06/07
We awoke at 3:00a, were on the freeway by 4:20a, and made it to UCLA in 25 minutes instead of the usual 60-90 minutes. I realize how close Bellflower is to Westwood except for traffic. Arrived at Admissions Dept on time at 5:00a and learned about our $3500 co-payment. They'll bill me.
Went to pre-op area at 5:30a and Susan's anesthesiologist and some of her nurses, including Laurie, our liaison for surgery updates. Susan had an initial exam, got IVs started, and went into surgery on schedule at 7:30a.
The family gathered in the cozy chapel at UCLA Medical Center after Susan's surgery to give thanks to God and ask for His continued hand of healing upon Susan.
We awoke at 3:00a, were on the freeway by 4:20a, and made it to UCLA in 25 minutes instead of the usual 60-90 minutes. I realize how close Bellflower is to Westwood except for traffic. Arrived at Admissions Dept on time at 5:00a and learned about our $3500 co-payment. They'll bill me.
Went to pre-op area at 5:30a and Susan's anesthesiologist and some of her nurses, including Laurie, our liaison for surgery updates. Susan had an initial exam, got IVs started, and went into surgery on schedule at 7:30a.
- 10:30a update from Laurie – all is going ok in O.R.
- 1:30p update – first phase is done and went well. They're doing an inter-operative MRI scan to check tumor location before 2nd phase. About 1-2 hours remain.
- 3:10p Dr Liau spoke to family while her assistants finished closing. (Susan's parents David & Helen, Aunt Linda, Randy & Dorothy with David & Nathan, and friend Vicki Gelberg were there with the kids and I.)
- The craniotomy revealed there had been quite a bit of brain swelling due to the significant tumor size. The tumor emerged and kind of lifted up when the skull was opened, which made the resection easier. Susan did not need to be awakened during surgery. Dr Liau removed about 8 grams of tumor; all samples tested were composed of glioblastoma cells. There are some tendrils remaining, including a portion across the mid-line to the right side. She said to plan on Susan having memory & cognitive setbacks due to surgery that should improve during recovery.
- The surgery was successful in significantly de-bulking Susan's brain tumor and in her coming through without complications. Now radiation and chemotherapy have a better chance of success since there are fewer tumor cells to target. Also, there is a possibility that Susan may be eligible for a clinical trial cancer vaccine.
- Great joy as the family visited Susan in ICU at 5:15p. She was waking up well and was still groggy, but has carried over memory from before surgery. Instead of asking all the where-what-who questions like before, she knows where she is and what's happened. She didn't talk much, but she said "I'm pretty clued-in to what's going on." All thanks and praise to God for a great day.
- My 9:00-10:00p ICU visit went well. Susan was more alert than earlier and aware of her surroundings. She was in quite a bit of pain and really wanted to sleep, so her nurse raised her dose of morphine. She remembered that Adam has "sore eyes" and needs to see the doctor. Actually, he has a muscle spasm in his neck & shoulder, but she had the general idea – a month ago, Susan couldn't remember our kids at all.
The family gathered in the cozy chapel at UCLA Medical Center after Susan's surgery to give thanks to God and ask for His continued hand of healing upon Susan.
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