Our family enjoyed several days at the cabin in Angelus Oaks after Thanksgiving, the first time Susan had been there since May. We’ll normally get 6-8 trips each year to our family’s mountain retreat that my grandparents built, but we've had to settle for fewer visits recently due to Susan’s illness. We enjoyed relaxing with my mom, sister and brother; family meals, forest walks, and watching football and movies. I said before that I tease Susan relentlessly and often proceed past the point of annoyance to complete a manic moment. One evening at the cabin I said one too many jokes and surpassed her limit. She decided to ignore me. She did a phenomenal job, to the amusement of the household. When I spoke to her, she would not acknowledge me and would ask if anyone heard anything. When I got into her line of sight, she would gaze past me. She became the relentless one and was perfect at it. I knew in a short while she would need my help to get ready for bed and thought she’d end it there. I was wrong. She allowed me back into her world, but only as her bathroom attendant. And she insisted I avert my eyes from her. We ended the night with a return to reality; but Susan gained my unwavering respect as a most worthy adversary on the field of contest.
One day last week as Susan sat at the dining table after a meal, Austin came up to hug is mom and then nibbled on her ear. Just then he whispered he’d bit her ear off and asked if she wanted it back. She didn’t respond. He asked again. She just looked around blankly. Then he moved to her “good” ear and asked again if she wanted her ear back. She said that would be good. Austin got a kick out of his funny mom.
On Monday I sang with our church’s Holiday Chorale in a Christmas presentation for Pathways Volunteer Hospice at the Lakewood Civic Center. It was a poignant opportunity and a privilege for our choir to minister among people who provide such important help to the terminally ill and to grieving families. That night as we lay on our pillows I told Susan about the evening. We talked about knowing three other people with brain tumors who had needed hospice care before they died. We recognized those who need hospice care are usually in the end stages of life and don’t communicate very much, and how hard that must be for a loved one. We wondered together whether Susan would ever need that type of care since it seems so far off from her presently good condition. I told her how glad I am that we have each other now and that we can talk about anything. I’m glad I have my friend, my partner, and my sweetheart with me. I recalled her occupational therapist’s question that day whether Susan had resumed normal social activities, perhaps like talking on the phone with a girlfriend. Susan said no, but said she didn’t really talk on the phone a lot to friends before her illness. We have close friends we love, but we realized she doesn’t have a chummy BFF girlfriend and I don’t have a best buddy. We have each other. Susan talks to me on the phone. I hang out with her. She said we’re none the worse for not having those types of friends. I said we have a strong marriage, a marvelous and enjoyable relationship. We prayed together and were thankful.
Friday, December 12, 2008
Monday, December 8, 2008
More chemo, more nausea
After over six months of chemotherapy injections, it seems the accumulation of the stuff is catching up with Susan. For the last two treatments, she began feeling nausea even during her infusions and started vomiting within hours. These episodes have been tough. Last Wednesday, the vomiting lasted overnight and into Thursday morning on about two-hour intervals – and this followed an extra heavy dose of Zofran for nausea before she left the treatment center. After a long night, I was able to get a different anti-nausea medication going. She stabilized. Up until month five on the Avastin/CPT-11 regimen, Susan had no nausea at all when having Zofran the day of and the two days following chemo. She would be tired, but not nauseous. While Avastin doesn’t seem to be an issue, evidently Susan’s tolerance for CPT-11 has waned. As a result, Dr Nghiemphu (back from maternity leave – it’s a girl!) said she’ll give Susan a different drug for nausea next week or just give her a break from the CPT-11. Seeing Susan as ill as she was made me wonder if we were headed for another hospitalization or who knows what. I’m just glad she snapped back well after several days’ rest.
Our insurance company approved Rehab Without Walls to begin working with Susan for the aggressive, in-home therapy – almost exactly 12 months from when the team began treatment last time. We met today with the physical and occupational therapists and will meet tomorrow with the speech therapist. It was great having Tracy and Kim back with Susan since this round of therapy promises to be another effective step toward independence at home. We discussed Susan’s goals for unassisted activities of daily living, housekeeping, and homework supervision. Tracy got her using her single-point cane instead of her walker and worked with her to overcome an acutely sore right shoulder and strengthen the muscles she needs to get up from a chair. Kim got her back into the kitchen with a quiz about the contents of each cupboard and drawer. I’d say Susan is physically weaker but cognitively stronger than she was a year ago. We all expect her to make rapid progress and sustain the encouraging path she’s on right now.
While trying to get home from Westwood last week, Susan was getting sick, we were stuck in gridlock on Wilshire Blvd behind some police activity, and we desperately needed to find a bathroom. I shucked and jived into a u-turn and aimed for the driveway next to a bank building, figuring we could use the facilities there. The driveway led to a narrow alley with no parking, but as we proceeded I saw a grassy area and a home-like building and knew we’d stumbled upon Pierce Brothers Westwood Cemetery. The lady there was very gracious to us as I explained our need, so we found a little God-given sanctuary among the skyscrapers. Susan was able to take all the time she needed before we made our way back to the car. As we thanked the lady I asked whether she knew my cousin Jim Biby, who’s an area director for the company that operates the property. She said she knows Jim and that he would be visiting there the next day, so I was able to leave a greeting for him. As I drove around the roadway on the way out, I pointed out some of the gravesites I noticed to Susan, like Merv Griffin (“I will not be back after this message”), Rodney Dangerfield (“There goes the neighborhood”), Marvin Davis, and Mel Torme. It wasn’t quite like seeing Mel Brooks at Junior’s Deli or John McCain on the 405, but was sort of a celebrity sighting nonetheless.
Our insurance company approved Rehab Without Walls to begin working with Susan for the aggressive, in-home therapy – almost exactly 12 months from when the team began treatment last time. We met today with the physical and occupational therapists and will meet tomorrow with the speech therapist. It was great having Tracy and Kim back with Susan since this round of therapy promises to be another effective step toward independence at home. We discussed Susan’s goals for unassisted activities of daily living, housekeeping, and homework supervision. Tracy got her using her single-point cane instead of her walker and worked with her to overcome an acutely sore right shoulder and strengthen the muscles she needs to get up from a chair. Kim got her back into the kitchen with a quiz about the contents of each cupboard and drawer. I’d say Susan is physically weaker but cognitively stronger than she was a year ago. We all expect her to make rapid progress and sustain the encouraging path she’s on right now.
While trying to get home from Westwood last week, Susan was getting sick, we were stuck in gridlock on Wilshire Blvd behind some police activity, and we desperately needed to find a bathroom. I shucked and jived into a u-turn and aimed for the driveway next to a bank building, figuring we could use the facilities there. The driveway led to a narrow alley with no parking, but as we proceeded I saw a grassy area and a home-like building and knew we’d stumbled upon Pierce Brothers Westwood Cemetery. The lady there was very gracious to us as I explained our need, so we found a little God-given sanctuary among the skyscrapers. Susan was able to take all the time she needed before we made our way back to the car. As we thanked the lady I asked whether she knew my cousin Jim Biby, who’s an area director for the company that operates the property. She said she knows Jim and that he would be visiting there the next day, so I was able to leave a greeting for him. As I drove around the roadway on the way out, I pointed out some of the gravesites I noticed to Susan, like Merv Griffin (“I will not be back after this message”), Rodney Dangerfield (“There goes the neighborhood”), Marvin Davis, and Mel Torme. It wasn’t quite like seeing Mel Brooks at Junior’s Deli or John McCain on the 405, but was sort of a celebrity sighting nonetheless.
Thursday, November 20, 2008
Good MRI, bad nausea
Yesterday at our clinic visit with Dr Cloughesy at UCLA we were once again relieved to learn that Susan’s brain tumor remains stable. A fourth stable scan since beginning CPT-11 and Avastin infusions in June makes for an excellent trend. Also, with slightly improved liver enzymes, she was able to receive the CPT-11 again after a six-week layoff. Even so, last night brought a struggle with nausea and vomiting that thankfully hasn’t been too much of an issue for Susan – and hopefully will ease soon. She had some vomiting on Tuesday prior to chemo, some abdominal cramps yesterday during chemo, and a long spell of vomiting during the night. We’re used to having a variety of suspects when an unpleasant symptom arises, so this is no exception. The urinary tract infection we learned yesterday has made a comeback can cause vomiting. The antibiotic she began taking last night for the infection can cause vomiting. Weaning off steroids like Susan is doing can cause vomiting. The chemo she had yesterday can cause vomiting. In any case, last night was a rough one. She managed to eat a little food today and get some rest. Hopefully, she’s past the worst of it. In the big picture, Susan’s official medical prognosis is still “guarded,” thanks in a big way to her tumor stability. When dealing with a brain tumor like GBM, terms like “stable” and “guarded” actually are comforting. We’re still in God’s hands, as always.We strolled to Westwood Village again yesterday after chemo and had lunch at Jerry’s Deli. When we were led coincidentally to the same table we had last time, I wheeled Susan into place and my mind flashed to our meal there two months ago. I’m so thankful for how much she’s improved just since then. Nurse Nikki had remarked earlier at Susan’s progress when she realized Susan was thick in our conversation together – that hadn’t been possible last summer. As we approach Thanksgiving Day, I am aware of many reasons to be grateful. Susan continues on a good path of recovery. Our children have their mother back home after a long absence. The malignant brain tumor that changed our lives 17 months ago has not advanced since April. We’re blessed with caregivers that allow me to work as much as possible. Our family and church support us in countless and priceless ways. The Living God we trust meets our needs each day. We are grateful.
Sunday, November 16, 2008
On a stable path
It’s been over three weeks since Susan came home. She’s more like her normal self than ever, for which we are thankful. Memory, awareness, and alertness have improved greatly; about to the point she was in February or March. For an idea of just how “with it” she’s become again, she probably could write this update herself. When she wants to confirm what day it is, she’s usually right. She’s remembering what activities our kids are up to, whom she talked to earlier in the day and things she did days or weeks ago. These things simply were not possible for her this past summer. It’s amazing what combined effect her back injury, hydrocephalus, anemia, and blood infection had on her, and it’s wonderful how far she’s come out of it. Susan continues to make progress physically also. When she came home, she needed a guiding hand from me and a firm grip on her walker to get around the house. Now the walker stands nearby since she needs only my hand or two to go short distances. Before, the only way she could leave the house was in the wheelchair through the back patio and out the side gate for transfer to the car. Now I can support her as she manages the front steps. Balance is still an issue; but her muscles are stronger. I think she’s ready for more aggressive rehab work and will contact the team who worked with her a year ago. Lord willing, she’ll have another good MRI this week and remain free of complications.
We’re getting great support from caregivers who help Susan from 7-4 on weekdays. Victoria is a freelance health aide who attends our church and is here Monday through Thursday. Cynthia is another aide from a home health company called Sheridan Care and is here each Friday. The help they provide is invaluable for companionship, safety, hygiene, and meals; and allows me to get in some decent hours at the office. My work providing financial advice is a challenge during the present economic and market crisis, so knowing Susan has competent care at home allows me to focus on the needs of our clients while I’m there.
Susan continues her chemotherapy regimen every two weeks at UCLA. Her liver enzymes have been elevated each of the last three visits since October, so she’s received only one of two drugs, Avastin. One of her daily drugs also expresses through the liver, so the CPT-11 only adds to the load. We’ll see what her blood tests reveal this week and whether she’ll resume with both IV meds. Aside from the 8-10 types of pills Susan swallows every day, we’ve also added twice-daily injections to our routine. I give her a Lovenox injection in her abdomen every morning and evening to prevent blood clots (deep vein thrombosis, or DVT). Dr Cloughesy informed me that developing blood clots is fairly common in brain tumor patients (for some reason). Susan already has an implanted IVC filter to prevent a clot from traveling to the heart; but the neuro-oncologist wants to prevent clots from forming – thus, the Lovenox. Susan dislikes getting stuck as much as I don’t like sticking her. But we do what we must.
I asked Susan out on a date Friday night. Lexie and the boys were at work and a football game respectively, so I contacted my wife’s social secretary, managed to clear her calendar, and asked her out on a date. She said “yes.” I was relieved because I couldn’t have handled the rejection. We went to Polly’s Pies for our first dinner date since May or June. She used the walker (not the wheelchair) in another point of progress. We had a terrific dinner and took home dessert to share. I think I’ll ask her out again.
We’ve been back to church together now for several Sundays. What a blessing. We’ve been greatly encouraged by expressions of care, prayers and reminders of prayers, hugs, tears, and well-wishes from our family in the Lord. Susan and I are continually aware of God’s greater purposes during our season of struggling with her brain cancer. We don’t know exactly what those purposes are, but we know God does, and we trust Him. Once again, it comes down to a profound mystery. We are not promised a life of ease or one that is free from threat, devoid of pain, or absent of calamity. But God does give us His presence and His peace during hardship – more than enough for us. The mystery is not just the fact of God’s hidden purposes during tough times – it’s that the circumstances do not need to be attended by the fear, worry and despair that naturally follow apart from God. That is a marvelous gift.
One other gift I’ve come to appreciate with our cancer journey has been the gift of intimacy with my wife. I think it’s the result of time spent. We’ve been together a lot over the past seventeen months, during periods ranging from uncertainty about death to lightness and joy. We laugh a lot. I tease Susan mercilessly, sometimes pushing past the obvious point of annoyance to prolong a manic moment. She’s usually ready to forgive me for that. We’ve had countless tender moments of sharing our deepest hearts with each other and professing our mutual love. We just enjoy being together. We genuinely never tire of each other – I guess that’s the mark of abiding love. We trust each other totally as our lives are more intertwined than they ever have been. Susan knows I’ll do anything for her. Anything. And she never forgets to express her appreciation. I often tell her I need to do a good job so she doesn’t fire me. I’m not surprised it took brain cancer to bring us to the finest point of our marriage, and I’m not even sorry for it. To rally together and grow closer during hard times is the way it should be.
We’re getting great support from caregivers who help Susan from 7-4 on weekdays. Victoria is a freelance health aide who attends our church and is here Monday through Thursday. Cynthia is another aide from a home health company called Sheridan Care and is here each Friday. The help they provide is invaluable for companionship, safety, hygiene, and meals; and allows me to get in some decent hours at the office. My work providing financial advice is a challenge during the present economic and market crisis, so knowing Susan has competent care at home allows me to focus on the needs of our clients while I’m there.
Susan continues her chemotherapy regimen every two weeks at UCLA. Her liver enzymes have been elevated each of the last three visits since October, so she’s received only one of two drugs, Avastin. One of her daily drugs also expresses through the liver, so the CPT-11 only adds to the load. We’ll see what her blood tests reveal this week and whether she’ll resume with both IV meds. Aside from the 8-10 types of pills Susan swallows every day, we’ve also added twice-daily injections to our routine. I give her a Lovenox injection in her abdomen every morning and evening to prevent blood clots (deep vein thrombosis, or DVT). Dr Cloughesy informed me that developing blood clots is fairly common in brain tumor patients (for some reason). Susan already has an implanted IVC filter to prevent a clot from traveling to the heart; but the neuro-oncologist wants to prevent clots from forming – thus, the Lovenox. Susan dislikes getting stuck as much as I don’t like sticking her. But we do what we must.
I asked Susan out on a date Friday night. Lexie and the boys were at work and a football game respectively, so I contacted my wife’s social secretary, managed to clear her calendar, and asked her out on a date. She said “yes.” I was relieved because I couldn’t have handled the rejection. We went to Polly’s Pies for our first dinner date since May or June. She used the walker (not the wheelchair) in another point of progress. We had a terrific dinner and took home dessert to share. I think I’ll ask her out again.
We’ve been back to church together now for several Sundays. What a blessing. We’ve been greatly encouraged by expressions of care, prayers and reminders of prayers, hugs, tears, and well-wishes from our family in the Lord. Susan and I are continually aware of God’s greater purposes during our season of struggling with her brain cancer. We don’t know exactly what those purposes are, but we know God does, and we trust Him. Once again, it comes down to a profound mystery. We are not promised a life of ease or one that is free from threat, devoid of pain, or absent of calamity. But God does give us His presence and His peace during hardship – more than enough for us. The mystery is not just the fact of God’s hidden purposes during tough times – it’s that the circumstances do not need to be attended by the fear, worry and despair that naturally follow apart from God. That is a marvelous gift.
One other gift I’ve come to appreciate with our cancer journey has been the gift of intimacy with my wife. I think it’s the result of time spent. We’ve been together a lot over the past seventeen months, during periods ranging from uncertainty about death to lightness and joy. We laugh a lot. I tease Susan mercilessly, sometimes pushing past the obvious point of annoyance to prolong a manic moment. She’s usually ready to forgive me for that. We’ve had countless tender moments of sharing our deepest hearts with each other and professing our mutual love. We just enjoy being together. We genuinely never tire of each other – I guess that’s the mark of abiding love. We trust each other totally as our lives are more intertwined than they ever have been. Susan knows I’ll do anything for her. Anything. And she never forgets to express her appreciation. I often tell her I need to do a good job so she doesn’t fire me. I’m not surprised it took brain cancer to bring us to the finest point of our marriage, and I’m not even sorry for it. To rally together and grow closer during hard times is the way it should be.
Wednesday, November 5, 2008
Doing well at home
It’s been two weeks since Susan came home and even longer since my last update. Susan is doing well. Life is busy. Between working, caring for Susan, interviewing and orienting her caregivers, and administering our home, it’s surprising how quickly a couple of weeks went by. Susan’s homecoming came with great joy on October 22nd. We adapted easily to having her back with the family. The hugs and kisses come easily now. Each of the boys has had many occasions to stop and linger for a smooch while walking by or to go out of their way to love on their mom. Lexie has been extra cuddly too, with both of us. But the night Susan came home, Lexie came into the den and announced her plans for the evening. Susan began quizzing her about where she was going exactly, who she’d be with, when she’d get home, and so on. Lexie looked at me sort of puzzled. I just smiled at her and said with a lilt, “Mom’s back.”
As for me, one word sums up Susan being home: satisfaction. In fact, the feeling was ecstatic for the first several days. At the risk of being insensitive, I admit it seemed to me almost like she had returned to us from being dead. Of course, we knew her absence was temporary; but she hadn’t set foot in our home for over three months. Her side of the bed remained empty. Her clothes and cosmetics were untouched. We had adjusted to being at home without mom – the food purchases, the meals, the household routines all adapted to just dad and three teenagers. I couldn’t help but wonder whether we had a dry run to allow us practice in case she should pass away – but such thoughts are too big for me. With good reason, the contrast of her return brought sheer delight to us. We know absence makes the heart grow fonder; but I was surprised how much I had missed having Susan with me. I lay next to her that first night and told her I had missed her, how she completes me, and that I feel utterly satisfied being with her. It took three or four nights of the same thing before I expressed myself well enough. Lately, my words are simpler. “You make me happy.” Susan said it’s strange I would say that when she’s in her condition, so I emphasize the you who makes me happy no matter what the condition. It’s satisfying to be together. I will write more about our life during the past couple weeks as time allows.
I ignored paying bills and doing several other things this evening to sit with Susan while we watched TV awhile and eventually did our bedtime routine. I enjoyed spending the day with her as we went up to UCLA again for chemotherapy and just needed to linger with her. She prayed a beautiful prayer at bedtime. She thanked God for the gift of our lives, that He’s given us to each other and given us our children and our home. She thanked Him for always being with us and for making a home for us in heaven when it’s our time to die. She asked Him to fulfill His plans for us during our time on earth and to help us bring glory to His name. As she prayed like that for several minutes, it seemed like each thought that came to her was laden with truth and bore the nature of the Holy Spirit. I was aware of contentment now and for the future. Afterward, I told her how glad I am she’s secure in trusting God. She said this illness has caused her to test what she believes about God and decide whether it’s true for her. It is. I said her faith and confidence in eternal life have made her strong. She said she doesn’t think she’s very strong. I remembered what Paul wrote and said God’s power is made perfect in our weakness; and that’s the kind of strength she has. She said, “When I am weak, then I’m strong.” Yeah, that’s it.
As for me, one word sums up Susan being home: satisfaction. In fact, the feeling was ecstatic for the first several days. At the risk of being insensitive, I admit it seemed to me almost like she had returned to us from being dead. Of course, we knew her absence was temporary; but she hadn’t set foot in our home for over three months. Her side of the bed remained empty. Her clothes and cosmetics were untouched. We had adjusted to being at home without mom – the food purchases, the meals, the household routines all adapted to just dad and three teenagers. I couldn’t help but wonder whether we had a dry run to allow us practice in case she should pass away – but such thoughts are too big for me. With good reason, the contrast of her return brought sheer delight to us. We know absence makes the heart grow fonder; but I was surprised how much I had missed having Susan with me. I lay next to her that first night and told her I had missed her, how she completes me, and that I feel utterly satisfied being with her. It took three or four nights of the same thing before I expressed myself well enough. Lately, my words are simpler. “You make me happy.” Susan said it’s strange I would say that when she’s in her condition, so I emphasize the you who makes me happy no matter what the condition. It’s satisfying to be together. I will write more about our life during the past couple weeks as time allows.
I ignored paying bills and doing several other things this evening to sit with Susan while we watched TV awhile and eventually did our bedtime routine. I enjoyed spending the day with her as we went up to UCLA again for chemotherapy and just needed to linger with her. She prayed a beautiful prayer at bedtime. She thanked God for the gift of our lives, that He’s given us to each other and given us our children and our home. She thanked Him for always being with us and for making a home for us in heaven when it’s our time to die. She asked Him to fulfill His plans for us during our time on earth and to help us bring glory to His name. As she prayed like that for several minutes, it seemed like each thought that came to her was laden with truth and bore the nature of the Holy Spirit. I was aware of contentment now and for the future. Afterward, I told her how glad I am she’s secure in trusting God. She said this illness has caused her to test what she believes about God and decide whether it’s true for her. It is. I said her faith and confidence in eternal life have made her strong. She said she doesn’t think she’s very strong. I remembered what Paul wrote and said God’s power is made perfect in our weakness; and that’s the kind of strength she has. She said, “When I am weak, then I’m strong.” Yeah, that’s it.
Saturday, October 18, 2008
Coming home
Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.
Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.
I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”
This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.
“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.
“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.
The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).
This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?
Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.
I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”
This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.
“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.
“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.
The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).
This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?
Wednesday, October 8, 2008
Continued tumor stability, plus a lunch date
Today Susan had her 3rd MRI since beginning her secondary course of treatment for GBM with CPT-11 and Avastin. As Dr Cloughesy compared the scan layer by layer to the one on Aug 27, he noticed no change in Susan’s tumor and was pleased to say the tumor looks stable. In the world of malignant brain cancer, “stable” is a beautiful word. It’s a great relief to see the Avastin appears to be working. With that good news, we proceeded to oncology treatment center for Susan’s bi-weekly infusions. Her blood test today revealed elevated liver enzymes, a signal that her liver is straining to break down the CPT-11. She skipped it this time to give her body a rest. Having only Avastin today reduced our clinic time by an hour and a half and sent us packing by about 12:30. We’re thankful once again for answered prayer and for Susan’s continued improvement.
What to do when it’s lunchtime and you’re at UCLA Medical Center? Stroll down to Westwood! We shared another enjoyable meal together, this time at BJ’s for fish tacos, a chopped salad, and iced teas. Susan’s clearer state of mind recently has allowed for more normal activities and interaction, something we’re both enjoying. She’s much stronger to stand and walk, so transferring from place to place is easier. When we parked this morning, she showed improved initiative by unbuckling her seatbelt, opening her car door, and swinging her legs out. Later when we left, she buckled her seatbelt by herself. These usually are small things, but are significant for her.
Susan did poorly in her neurological quiz this morning and didn’t remember the month, day, date, place, or even why she was there – she said it was for her throat. Such low orientation is frustrating and discouraging for her, but is not devastating. I remind her that she can’t help it, that she’s doing her best, and that she hasn’t done anything wrong. In spite of her cognitive weakness and short-term memory loss, we still have lucid conversations about meaningful things and sometimes not-so-meaningful things – like when Nurse Denise brought Susan some graham crackers while she was receiving Avastin. I opened the package for her and asked, “Would you like some crackers now?” She replied, “Yes, I would.”
I held them and said, “I have an idea. Why don’t I eat the crackers and you can watch me?” “No, I don’t think that’s a good idea at all. Those are my crackers.” I handed them over. After a minute or two, she said, “Would you like one?” “No,” I said, “my wife won’t let me have any.” “She must be very mean.” “Oh, you have no idea. I ought to call Husband Protective Services. She’s brutal to me.” “You probably deserve it.”
What to do when it’s lunchtime and you’re at UCLA Medical Center? Stroll down to Westwood! We shared another enjoyable meal together, this time at BJ’s for fish tacos, a chopped salad, and iced teas. Susan’s clearer state of mind recently has allowed for more normal activities and interaction, something we’re both enjoying. She’s much stronger to stand and walk, so transferring from place to place is easier. When we parked this morning, she showed improved initiative by unbuckling her seatbelt, opening her car door, and swinging her legs out. Later when we left, she buckled her seatbelt by herself. These usually are small things, but are significant for her.
Susan did poorly in her neurological quiz this morning and didn’t remember the month, day, date, place, or even why she was there – she said it was for her throat. Such low orientation is frustrating and discouraging for her, but is not devastating. I remind her that she can’t help it, that she’s doing her best, and that she hasn’t done anything wrong. In spite of her cognitive weakness and short-term memory loss, we still have lucid conversations about meaningful things and sometimes not-so-meaningful things – like when Nurse Denise brought Susan some graham crackers while she was receiving Avastin. I opened the package for her and asked, “Would you like some crackers now?” She replied, “Yes, I would.”
I held them and said, “I have an idea. Why don’t I eat the crackers and you can watch me?” “No, I don’t think that’s a good idea at all. Those are my crackers.” I handed them over. After a minute or two, she said, “Would you like one?” “No,” I said, “my wife won’t let me have any.” “She must be very mean.” “Oh, you have no idea. I ought to call Husband Protective Services. She’s brutal to me.” “You probably deserve it.”
Monday, October 6, 2008
Family time
Yesterday, Susan was able to join the family at Randy & Dorothy’s to celebrate Nathan’s, Austin’s and Lexie’s birthdays. Aside from her frequent medical appointments and an occasional stroll to the beach, she’s otherwise been hospital-bound continually since June. Needless to say, it was a joyful and memorable event. It was gratifying to have her back with us to enjoy lunch, birthday cake and gift giving, and just being with the family. She even walked from the house to the car when it was time to go, using her wheelchair as a walker. She was tired when we got back to her room after five hours; but I believe she had a satisfying nap. We’ll be back in Westwood this week for Susan’s six-week MRI and oncology visit, plus chemotherapy. These tumor updates always come with cautious anticipation. We hope and pray for the best, are ready for anything, and continue to trust God for the outcome.Several things stood out to me this week. Susan seemed more aware yesterday of her situation and need for care than she’s been in a long time. That awareness is wonderful because it makes for more closeness, conversation, and a sense of normalcy. But as I’ve said before, it’s also hard because she has a greater notion of what she’s lacking. She felt bad when she struggled to sign birthday cards and knew her penmanship looked childlike. I told her it didn’t matter – the main thing is that she signed them, a gift in itself. She understood. Later, she apologized that I had to help her so much with even the most basic and personal tasks – she’s sorry she’s like this and didn’t choose to be this way. We had another of those look-each-other-in-the-eyes moments when I affirmed my love for her, that I’m glad we’re together, and that I’ll do anything to help her. Again, she understood. Susan has a precious heart.
On Saturday I attended the funeral of Mary Jo Walker, wife of Will (The Great Guillermo), mother of my life-long pal Kurt and sister Traci, companion of my own parents when she and Will were young couples, and add-on Mom to me an a handful of other teenage urchins at the Walker Bed & Breakfast on 6th Street in Downey. I’m not used the idea of her not being there. I’ll miss the 45-minute conversations we might have when I’d make a quick phone call. Her funeral was a glorious example of a vibrant, fun, and unique woman of God who belongs to the Lord in life and in death. Since fun and humor were a hallmark of Jo’s life, we had a lot of laughs as people shared their stories. I’m so proud of Will and how he expressed his love for his wife of 53 years.
During the meal that followed, I had a magnificent vision of Heaven as I looked across the gathering of family and friends. Everyone had come to remember a dear woman, comfort the family, and celebrate the God of the resurrection and his gift eternal life – our hope. I had these things in mind as I sat there between conversations when time seemed to stop for a moment. As I looked upon scores of friends sharing a meal and animated conversation, I saw people who were connected by spans of time and a genuine bond in Christ. The scene was awesome. No one seemed hurried. Joy pervaded. Laughter erupted. The scene was intensified for me because I was looking at people I hadn’t seen in one, two and three decades. I realized this is partly what Heaven will be like – a great feast, a joyful celebration, and the surprise of seeing loved ones who presently exist only in memory (“What? It’s you!). My vision evoked a pleasure that went deep on many levels, and I thanked God for it. The only thing missing, I realized, was the visible presence of the throne of Heaven and the Lamb of God. He was there, but laying low. Otherwise, He would cast an element of majesty and glory over the feast that we’re not capable of imagining; and the one we came to mourn would be at the table with us. To see a world where God Himself replaces the sunlight and there’s no sickness, death or sorrow? That will have to wait awhile.
Finally, I was impressed to reconsider my way of thinking about Susan’s illness and how I’m praying. A reading from Streams in the Desert last week spoke to me of God being more interested in us knowing Him and growing in character and faith than almost anything else. He’s certainly not concerned about our troubles in the way that we are. While we’re consumed by our circumstances and intensely focused on the outcome, the Living God is there working through those circumstances so we can focus intensely on Him. The difference is infinite. It’s not that we shouldn’t hope for the best outcome and ask for it, but what happens with our hearts along the way is so much more valuable. I have been challenged to adjust my thinking and to trust God differently, because the road of suffering is actually a precious gift that yields a priceless fruit in an unexpected way. And, oh yeah, He’s got the outcome all worked out.
Tuesday, September 30, 2008
A hot date
Last Wednesday brought us back to UCLA for chemotherapy with Susan’s bi-weekly treatment, quite a routine event now. Nikki was expecting us and had Susan’s bed waiting. What service. The nurse was impressed once again with Susan’s alertness and said she’s better than she’s been in months. I agreed. I shared that when we’d parked downstairs, Susan asked why I hung the handicapped placard on the mirror when we weren’t parked in a handicapped space. It’s because the displaying the placard allows us to park for free – but the big deal is that Susan noticed such a detail. Following Susan’s blood test, we settled in for 30 minutes of Avastin and 90 minutes of CPT-11. Susan had an exam by the nurse practitioner, then slept most of the time.It was 6pm when we were ready to leave; and given the choice of rush hour traffic or a hot-date dinner together, our decision was easy. I wheeled her down to Westwood where we came upon Jerry’s Deli and enjoyed the first dinner out together in about 4 months. She ordered one of her favorite meals, open-faced hot turkey sandwich, while I had a great salad nicoise with lots of sour things in it and toasted bagel slices on the side. Afterward, I got her attention with the phrase “ice cream sandwich” and we scooted over to Diddy Reese to share a generous scoop of mint chip ice cream between two chocolate-chocolate chip cookies. We had gobs of deliciousness for only $1.50.
At dinner we talked about Susan continuing to work hard in physical therapy so she can come home soon – not soon enough for her. She’s been feeling cooped up recently and was really glad to have a day away from the hospital. I asked how she’s doing in her spirit. “I’m ok,” she said. “I’m not jumping for joy, but I’m doing ok.” I asked her if she’s trusting God. “Not as much as I should, but as much as I can.” We agreed the hard part about her illness is the uncertainty of the outcome. I told her how proud I am of her that she’s doing so well after going through so much, and that I love her positive outlook and her never-quit attitude. Once again, we were left to contemplate life taking this unimaginable turn while God continues to provide for us in every way. It’s just a mystery. Susan’s a bit of a rule-follower, so she asked me if we’d be in trouble for being away for so long. “Ha!” I scoffed brazenly. “Let ‘em find us.” I’m the wild risk-taker who placed my wife in jeopardy of a hospital reprimand (or having her rations reduced to moldy bread and gruel), all for the sake of a glorious hot date and the nicest dinner we’ve had in a while. At least I’d be getting her back on a full stomach to endure her torture.
At dinner we talked about Susan continuing to work hard in physical therapy so she can come home soon – not soon enough for her. She’s been feeling cooped up recently and was really glad to have a day away from the hospital. I asked how she’s doing in her spirit. “I’m ok,” she said. “I’m not jumping for joy, but I’m doing ok.” I asked her if she’s trusting God. “Not as much as I should, but as much as I can.” We agreed the hard part about her illness is the uncertainty of the outcome. I told her how proud I am of her that she’s doing so well after going through so much, and that I love her positive outlook and her never-quit attitude. Once again, we were left to contemplate life taking this unimaginable turn while God continues to provide for us in every way. It’s just a mystery. Susan’s a bit of a rule-follower, so she asked me if we’d be in trouble for being away for so long. “Ha!” I scoffed brazenly. “Let ‘em find us.” I’m the wild risk-taker who placed my wife in jeopardy of a hospital reprimand (or having her rations reduced to moldy bread and gruel), all for the sake of a glorious hot date and the nicest dinner we’ve had in a while. At least I’d be getting her back on a full stomach to endure her torture.
Today, I visited Susan at 11am and saw her in action for therapy. She had just finished 20 minutes of leg work on the “omnibike” and was ready for a walk. With Melissa’s help to stand, Susan used a walker to shuffle out the door and down the long hallway to the bulletin board by the cafeteria – about 100 feet, with only Melissa’s hand on her back. I was impressed. We helped her into her wheelchair with missing foot rests and pushed her back to the therapy room as she lifted her feet off the floor for the whole distance. She returned to the omnibike for 20 minutes of arm work and left me grateful for her therapy team and for her terrific progress.
Sunday, September 21, 2008
A good week at rehab
With her back repair and recent complications behind her, Susan had a good week of rehab at Broadway by the Sea. Therapist Melissa told me it’s been easier for Susan to lean forward for leverage and push herself up to stand without back pain or her rigid brace. Susan walked using her walker about 10-20 yards down the hallway and back with Melissa assisting. She’s been spending a good part of each day out of bed, having meals in the dining room with other patients, having therapy, or sitting in her wheelchair. Her short-term memory is very poor, so when I see her toward the end of the day, she has little or no recollection of how the day went or what she did. That remains a disappointment. Even so, I’m glad she’s in good spirits and is alert and conversational.
This afternoon when the boys and I visited and Susan wanted to move from her wheelchair into bed, I had her try to stand up from her chair. She didn’t quite have the strength to get up by herself, but she needed only about half the assistance from me than before. I also was pleased that she needed less support when standing. In her chair she was able to extend both legs and lift up her feet, another milestone compared to two months ago. I’m encouraged to see the strength Susan has regained.
I had numerous encounters with people at church today ranging from a few words to meaningful conversations and prayer. Once again, I was deeply impressed by the support and care from our family of God. Debbie Thomas conveyed her love for us with empathy and tears. Daniel Gannon carefully asked about each one of our family. Joyce Wybenga radiated love, as always. Gordon and Michael Weisenberger urged me to make sure I take care of myself. Such compassion, loving inquiry, and firm commitment are a human treasure and a gift from God. Each one said they’re praying for us. In my few moments with Craig Chapman, I thanked him for his prayer and told him we feel it. Perhaps wishing he could do more, he said “it’s kind of intangible.” While I agreed, I also told him the effects are quite real. Thanks to God, we have His true peace – I know it makes no sense, but in spite of our circumstances, we know everything is ok.
This afternoon when the boys and I visited and Susan wanted to move from her wheelchair into bed, I had her try to stand up from her chair. She didn’t quite have the strength to get up by herself, but she needed only about half the assistance from me than before. I also was pleased that she needed less support when standing. In her chair she was able to extend both legs and lift up her feet, another milestone compared to two months ago. I’m encouraged to see the strength Susan has regained.
I had numerous encounters with people at church today ranging from a few words to meaningful conversations and prayer. Once again, I was deeply impressed by the support and care from our family of God. Debbie Thomas conveyed her love for us with empathy and tears. Daniel Gannon carefully asked about each one of our family. Joyce Wybenga radiated love, as always. Gordon and Michael Weisenberger urged me to make sure I take care of myself. Such compassion, loving inquiry, and firm commitment are a human treasure and a gift from God. Each one said they’re praying for us. In my few moments with Craig Chapman, I thanked him for his prayer and told him we feel it. Perhaps wishing he could do more, he said “it’s kind of intangible.” While I agreed, I also told him the effects are quite real. Thanks to God, we have His true peace – I know it makes no sense, but in spite of our circumstances, we know everything is ok.
Sunday, September 14, 2008
Another good week
We spent a lot of time together this week, from Susan’s orthopedist appointment on Monday to chemotherapy on Wednesday to her overnight hospitalization for back surgery on Thursday. It was a good week in all respects; and Susan did well. Monday’s visit with Dr Bhalla got Susan scheduled for Thursday’s kyphoplasty in short order, since it’s been almost two months since her L-1 fracture that by now has begun to heal. The doctor didn’t want to wait even another week. We got the pre-op and admissions stuff going right away.On Wednesday, it was Nikki’s turn once again to help with Susan’s chemo, so we got excellent care. She remarked immediately about Susan’s appearance and her responsiveness and how much she’s improved in just two weeks. When her routine pre-chemo blood test showed low counts for red cells and hemoglobin, and especially because of Thursday’s kyphoplasty, she received a two-unit transfusion following Avastin and CPT-11. The additional three hours for the transfusion made for a long day at UCLA. After about seven hours in clinic, we left for Long Beach at 5pm. Earlier, as I watched each bag of blood drain into Susan’s body, I saw what it’s like to be on the receiving end of someone’s blood donation and remembered it’s been about a year since my last one. Human blood is one medical remedy scientists can’t manufacture – it must come from a vital person-to-person exchange. My friend Robbie Lyell and I got started donating in high school as soon as we met the age threshold at 18. A retired nurse named Ada was the volunteer who drained our blood at Apollo Park in Downey in 1981 and was the object of our teasing. I think Rob invited her to prom. We went partly for the cookies and I still do.
Thursday’s kyphoplasty brought Susan back as an inpatient at Long Beach Memorial fourteen months after her first brain surgery. This procedure was a breeze in comparison. She was wheeled from pre-op to the operating room at about 1:30pm and was done in about 45 minutes. We thank God for a smooth procedure and no complications. We had a great surprise when Susan’s cousin-in-law Carlos Gutierrez greeted us in scrubs and announced he would be the RN assisting Dr Bhalla. It was a fun scheduling “coincidence” I know the Lord arranged – and it was good to see Carlos in action. Even the anesthesiologist was familiar since he had done Susan’s mastectomy two years ago. It was all kind of a family affair. Of course the best result came with Dr Bhalla’s comments after surgery and exam on Friday. The surgery was a complete success. Susan has no physical restrictions, can resume full therapy right away, and will no longer need to wear a cumbersome back brace. We’re just thankful. We’re hoping she can remain free from complications or infection now, make progress with physical therapy, and return home when she’s able.
I realized how much Susan’s been through when I began to give the nursing team a summary of her medical history and current condition. My head was swimming with facts and details – lymph node removed during 2006 mastectomy (no BP or blood draws on right side); implants include surgical clips in her skull, the IVC filter, the L-P shunt, the port catheter; right side weakness and loss of vision due to stroke; unable to stand without assistance; needs zofran for nausea following yesterday’s chemotherapy – what important info did I forget? For some, a kyphoplasty might be a singular medical remedy to meet a significant need – for Susan, it’s one of many to follow a multitude. It’s kind of crazy; but that’s just how it is. During one quiet moment together at LB Memorial, I told Susan I loved her. She said, “I love you, too…but you got the better end of the deal.”
Monday, September 8, 2008
Progress continues
Following last week’s spinal MRI, we met with Dr Bhalla today to discuss his thoughts about Susan having the kyphoplasty procedure. As I described it before, it's a non-invasive surgery for compression fractures where the cavity of the vertebra is filled with a small balloon followed by bone cement to restore its normal height and shape. The new images show clearly the L1 compression fracture and swelling in the surrounding area – and Susan has tenderness in that area of her back with pain when she moves. These are classic indications that kyphoplasty may provide relief. Dr Bhalla expressed some concern about Susan having general anesthesia due to her neurological condition; but her oncologist cleared her to proceed. She’ll have her scheduled chemo at UCLA on Wednesday; then have the procedure done on Thursday at Long Beach Memorial and stay overnight for observation. We’re hopeful for great results.
Meanwhile, Susan has been making progress in gaining strength and function. She’s been more conversational and in good spirits, making broader mental connections than she has in months – like when I described a church we passed and she thought of my dad. Yesterday, she joked with the boys and teased Adam by snapping her teeth at him, giving him delighted laughter. When we arrived at Dr Bhalla’s office today, Susan unbuckled her seatbelt and opened the passenger door, two simple acts of awareness I just haven’t seen in her for a long time. The current momentum is encouraging.
Her progress can be oddly difficult, like when she recently got some perspective on her state of being and became somewhat depressed. She realized “this version of myself” is hard on everyone and apologized. I dismissed any burden and reminded her she didn’t choose to have a brain tumor. It is what it is. We’re in it together. Her heightened awareness can be hard for me as well. When I visited her on Friday evening, her thoughts were clear. She asked me, “So, how’s life and all of this going for you?” It had been so long since she was capable of showing such a level of compassion for me, I barely could tell her honestly “it’s hard” before I broke down crying. She held me and comforted me. After 23 years of marriage, Susan’s support as my wife is ingrained in me. It’s just there. But it seems like a long time since I felt it like that. Gratitude and sorrow welled up equally. This brain tumor thing is tough and it hurts! Later in the car, I cried more and prayed. I felt healed.
Meanwhile, Susan has been making progress in gaining strength and function. She’s been more conversational and in good spirits, making broader mental connections than she has in months – like when I described a church we passed and she thought of my dad. Yesterday, she joked with the boys and teased Adam by snapping her teeth at him, giving him delighted laughter. When we arrived at Dr Bhalla’s office today, Susan unbuckled her seatbelt and opened the passenger door, two simple acts of awareness I just haven’t seen in her for a long time. The current momentum is encouraging.
Her progress can be oddly difficult, like when she recently got some perspective on her state of being and became somewhat depressed. She realized “this version of myself” is hard on everyone and apologized. I dismissed any burden and reminded her she didn’t choose to have a brain tumor. It is what it is. We’re in it together. Her heightened awareness can be hard for me as well. When I visited her on Friday evening, her thoughts were clear. She asked me, “So, how’s life and all of this going for you?” It had been so long since she was capable of showing such a level of compassion for me, I barely could tell her honestly “it’s hard” before I broke down crying. She held me and comforted me. After 23 years of marriage, Susan’s support as my wife is ingrained in me. It’s just there. But it seems like a long time since I felt it like that. Gratitude and sorrow welled up equally. This brain tumor thing is tough and it hurts! Later in the car, I cried more and prayed. I felt healed.
Friday, September 5, 2008
A quiet week
This has been a quiet week for Susan, a most welcome thing. She had a spinal MRI on Wednesday at a local imaging center in Long Beach that will allow the orthopedist to evaluate her recent lumbar and older thoracic injuries. We’ll meet with him again on Monday. Otherwise, she’s been fever-free, mostly pain-free, stronger, more alert and less confused. She continues to have daily therapy. Her stay at Broadway by the Sea is still open-ended and will depend on her getting stronger and walking again. Between UCLA and rehab, she’s been hospitalized for nearly two months – we miss her and look forward to having her home again.
Friday, August 29, 2008
Finally a lift
This was a significant week for Susan in several ways as she met with an orthopedist regarding her back injury, had another brain MRI and oncology visit at UCLA, and got a lift in her cognitive level. We met on Monday with Dr Sarbpaul Bhalla in Long Beach, a veteran orthopedist who evaluated Susan’s July spinal images from UCLA and ordered a new thoracic-lumbar MRI for next week. He’ll determine whether she’s a candidate for kyphoplasty, a non-invasive surgery for compression fractures where the cavity of the vertebra is filled with a small balloon followed by bone cement to restore its normal height and shape. The procedure is useful for its immediate restoration that relieves pain, has few side effects, and is fairly simple to do.
We had a full day at UCLA on Wednesday with good news about Susan’s brain tumor – the MRI showed no change compared to July. This week's scan was important since the June/July comparison still involved the transition to Susan’s new CPT-11/Avastin treatment and lacked a good starting point or baseline. We are very grateful for tumor stability and lack of growth. We enjoyed our meeting with Dr Timothy Cloughesy, who directs the neuro-oncology program at UCLA and is covering Dr Nghiemphu’s patients while she’s on maternity leave. With the good report on tumor, we focused on Susan’s complications and the additional good news of improvement with red and white blood cells (anemia and infection). Also her spinal fluid was clear following last week’s lumbar puncture (no meningitis); and her proteinuria improved so she could receive Avastin again. Since Susan tested positive this week for blood clots (DVT) in both legs, Dr Cloughesy prescribed a blood thinner called lovenox. And with evidence of osteoporosis brought on by chemotherapy, he prescribed a bone strengthener called fosomax.
Starting Wednesday, I also noticed some of the fog clouding Susan’s mind start to lift. It’s hard to say whether it’s due to relief from infection, last week’s spinal tap, or recovery from her last chemo, but she was thankfully more alert, more talkative, and more aware of her situation and surroundings. I completely enjoyed having more fluid conversations with her than we’ve had for a while, especially since last week she asked me whether her parents and her fiancé knew what was going on with her. That comment brought one of those moments of gentle correction and acknowledgment that there’s a reason she’s confused – and it’s ok.
Susan’s funnies keep coming. When I opened her car door after arriving at UCLA, she said to me with feigned surprise, “Oh, who are you?” I said, “I’m fine.” (This is a game we’ve played for years.) Then I told her I resolve to respond with “I’m fine” every time she asks me who I am, and to respond with “I’m your husband” every time she asks me how I am. She looked at me straight-faced and said, “And I resolve to hit you every time you do that.” Later in the hallway, we encountered our pal Carla who helps schedule Susan’s appointments. We must have been on her list or something, because she saw us as she busily walked by and said, “Hey, you’re my next people.” I said excitedly to Sue, “Hey, honey, we’re her next people!” Susan replied out of the blue, “That’s good, as long as she saves us some of her candy.” For Susan, thoughts of candy produce excitement, and excitement produces thoughts of candy.
We had a full day at UCLA on Wednesday with good news about Susan’s brain tumor – the MRI showed no change compared to July. This week's scan was important since the June/July comparison still involved the transition to Susan’s new CPT-11/Avastin treatment and lacked a good starting point or baseline. We are very grateful for tumor stability and lack of growth. We enjoyed our meeting with Dr Timothy Cloughesy, who directs the neuro-oncology program at UCLA and is covering Dr Nghiemphu’s patients while she’s on maternity leave. With the good report on tumor, we focused on Susan’s complications and the additional good news of improvement with red and white blood cells (anemia and infection). Also her spinal fluid was clear following last week’s lumbar puncture (no meningitis); and her proteinuria improved so she could receive Avastin again. Since Susan tested positive this week for blood clots (DVT) in both legs, Dr Cloughesy prescribed a blood thinner called lovenox. And with evidence of osteoporosis brought on by chemotherapy, he prescribed a bone strengthener called fosomax.
Starting Wednesday, I also noticed some of the fog clouding Susan’s mind start to lift. It’s hard to say whether it’s due to relief from infection, last week’s spinal tap, or recovery from her last chemo, but she was thankfully more alert, more talkative, and more aware of her situation and surroundings. I completely enjoyed having more fluid conversations with her than we’ve had for a while, especially since last week she asked me whether her parents and her fiancé knew what was going on with her. That comment brought one of those moments of gentle correction and acknowledgment that there’s a reason she’s confused – and it’s ok.
Susan’s funnies keep coming. When I opened her car door after arriving at UCLA, she said to me with feigned surprise, “Oh, who are you?” I said, “I’m fine.” (This is a game we’ve played for years.) Then I told her I resolve to respond with “I’m fine” every time she asks me who I am, and to respond with “I’m your husband” every time she asks me how I am. She looked at me straight-faced and said, “And I resolve to hit you every time you do that.” Later in the hallway, we encountered our pal Carla who helps schedule Susan’s appointments. We must have been on her list or something, because she saw us as she busily walked by and said, “Hey, you’re my next people.” I said excitedly to Sue, “Hey, honey, we’re her next people!” Susan replied out of the blue, “That’s good, as long as she saves us some of her candy.” For Susan, thoughts of candy produce excitement, and excitement produces thoughts of candy.
Thursday, August 21, 2008
Complications persist
This has been a tough couple of weeks for Susan. A nurse at Broadway by the Sea called late Friday to inform me the blood cultures taken earlier in the week had come back positive for e coli – the infection had spread from her urinary tract to her bloodstream. They were starting her with an antibiotic called recophin to be given IV for ten days. A quick call to Dr Nghiemphu clarified that a blood infection can be serious; but it’s encouraging that they caught it early. She feels the recophin will do the job.
I took Susan for follow-up to UCLA yesterday to visit Dr Uslan with the infectious disease team, who said urinary tract infections involving e coli can be an issue for patients dealing with incontinence and they can sometimes travel to the kidneys and infect the blood. He examined her port catheter also since infections can also result from IVs; but the catheter site looks ok and is contained under the skin. He confirmed recophin as the treatment of choice, took another blood sample, and ordered a follow-up blood test for several weeks from now to check her status.
We finally got Susan scheduled for her lumbar puncture (spinal tap), so we were back at UCLA this morning for the procedure. We checked in to the radiology unit at the Ronald Reagan Medical Center so the neurosurgeon could use their fluoroscopy (video x-ray) equipment. The procedure went smoothly – the surgeon collected about 25ccs of fluid. That alone should help the hydrocephalus for now, while the fluid will be checked for infection. Susan was in a lot of pain since all the bed-wheelchair-car transfers aggravated her back injury. She said everything hurt, so I couldn’t tell what was back pain or spinal tap pain or what. I stopped by the oncology clinic to get Susan some vicodin before we headed back to Long Beach. Nurse Nikki was alarmed that Susan wasn’t kept lying down – standard protocol is to lie flat on your back after a spinal tap to prevent any leakage. (What do I know?) Dear Nikki found Susan a bed in the clinic so she could rest a few hours and gave her some pain meds. Such great staff have made the Jonsson Cancer Center clinic a refuge at UCLA when Susan needs help. We’ll be back next week for MRI, doctor visit, and chemo, and we continue to pray for her healing in all respects.
Susan keeps the physical therapy staff at Broadway by the Sea laughing. One day last week as she was ready to walk while holding parallel bars, John prompted Susan to step towards him. She didn’t respond right away, which is not unusual since she sometimes has trouble initiating an action. He prompted her again, but she still didn’t react. When he encouraged her a third time and she just stood there, he became concerned she might be having pain or something. He asked, “Susan, is something wrong?” She gave a droll reply, “Well, I do have this illness...”
I took Susan for follow-up to UCLA yesterday to visit Dr Uslan with the infectious disease team, who said urinary tract infections involving e coli can be an issue for patients dealing with incontinence and they can sometimes travel to the kidneys and infect the blood. He examined her port catheter also since infections can also result from IVs; but the catheter site looks ok and is contained under the skin. He confirmed recophin as the treatment of choice, took another blood sample, and ordered a follow-up blood test for several weeks from now to check her status.
We finally got Susan scheduled for her lumbar puncture (spinal tap), so we were back at UCLA this morning for the procedure. We checked in to the radiology unit at the Ronald Reagan Medical Center so the neurosurgeon could use their fluoroscopy (video x-ray) equipment. The procedure went smoothly – the surgeon collected about 25ccs of fluid. That alone should help the hydrocephalus for now, while the fluid will be checked for infection. Susan was in a lot of pain since all the bed-wheelchair-car transfers aggravated her back injury. She said everything hurt, so I couldn’t tell what was back pain or spinal tap pain or what. I stopped by the oncology clinic to get Susan some vicodin before we headed back to Long Beach. Nurse Nikki was alarmed that Susan wasn’t kept lying down – standard protocol is to lie flat on your back after a spinal tap to prevent any leakage. (What do I know?) Dear Nikki found Susan a bed in the clinic so she could rest a few hours and gave her some pain meds. Such great staff have made the Jonsson Cancer Center clinic a refuge at UCLA when Susan needs help. We’ll be back next week for MRI, doctor visit, and chemo, and we continue to pray for her healing in all respects.
Susan keeps the physical therapy staff at Broadway by the Sea laughing. One day last week as she was ready to walk while holding parallel bars, John prompted Susan to step towards him. She didn’t respond right away, which is not unusual since she sometimes has trouble initiating an action. He prompted her again, but she still didn’t react. When he encouraged her a third time and she just stood there, he became concerned she might be having pain or something. He asked, “Susan, is something wrong?” She gave a droll reply, “Well, I do have this illness...”
Thursday, August 14, 2008
Dogged by complications
Susan’s progress at rehab has been hampered by a return of all-too familiar symptoms – headache, fever, confusion and fatigue. She complained of a headache on Saturday for the first time in weeks, followed by a low-grade fever Saturday night and a more substantial 101°F on Sunday morning. These are signals that something’s wrong; but we don’t know exactly what. The problem all along has been these symptoms can have a variety of causes. Following two visits to UCLA this week for testing and chemo, we know of several issues. Her urinary tract infection has emerged again and will require more antibiotics. She has anemia, a low red blood cell count caused by chemo that causes great exhaustion and was treated yesterday with a blood-building medication. Also, she’s developed proteinuria, excessive protein in her system that affects kidney function and prevented her from receiving Avastin yesterday. And hydrocephalus still lurks and may be clouding the picture also – the staff at UCLA are trying to arrange an outpatient spinal tap instead of admitting her to the hospital for the procedure.Meanwhile, Susan’s spirits continue to be good. Her positive outlook, gracious nature, and cooperative approach make an impression on her caregivers. I’m constantly amazed at her mental and spiritual strength in spite of her physical and cognitive weakness. Her champion attitude has been a tremendous help for her and those who help her. I’m grateful for and proud of my wife.
Being aware of God’s presence in our situation this past year with Susan’s brain cancer and just last week with Sharon Mott’s passing, I have pondered a powerful idea about God’s purposes in our seasons of suffering. How can He be the Comforter if we have no need of comfort? How can he show Himself to be our Healer if we have no need of healing? How can He become our Savior unless we know we need saving? These questions come with tears. There is a great mystery wrapped up in the nature of God (who is good) and the plight of man (who is proud and doesn’t always know he needs God). A miracle is nothing more than the intersection of God’s glorious provision at the point of our need.
Tuesday, August 12, 2008
Remembering Sharon Mott
Our sister Sharon Mott passed away unexpectedly on July 27 from an apparent heart attack. She was my sister. (You can tell from the picture that we’re related.) We celebrated her home-going on Friday in a packed Emmanuel sanctuary with an extraordinary outpouring of grief and tears, laughing and thankfulness. We continue to uphold Patricia, Deborah, Clinton Jr, Clinton Sr, and the Mott family in prayer for peace and strength. Sharon’s passing at age 45 is another stunning reminder of the brevity of life and of the need to be mindful that God could call each of us away at any moment.About a dozen of Sharon’s family and friends shared thoughtful and honest comments about who she was and how she affected us. People spoke from diverse perspectives like the churches she attended over the years, the Vons store where she worked, and the apartment where she lived. What emerged was a portrait of an ordinary, “just like us” person who was uniquely special, who was extraordinarily talented, and who loved the Lord. Her fellow Inspirational Choir members from Emmanuel will miss her deeply – her joy, her confident presence, her wit, her silly accents, her encouragement, and her amazing voice.
As I was privileged to share some comments as a fellow choir member, I reflected on the nature of suffering, and how in the face of untimely tragedies it’s natural to ask, “Why?” I believe we’re universally hard-wired to desire and expect a satisfying life. When tragedy interrupts, something inside of us knows it’s not right. We want to know why. Even Jesus, at the height of his human suffering on the cross, cried out, “My God, my God, why have you forsaken me?” Of course, we know the despair of the question will not be comforted with an answer, at least not in this life.
The root of our desire for a satisfying life comes out of the perfect way God created us, eternal beings in perfect fellowship with our Father and Creator. When Satan tempted Adam and Eve, they used our gift of free will to choose sin, ushering in our age-old war with sin, death and hell. The amazing thing about God is His remedy for us – it’s not religion or good deeds or human potential. His remedy is Him. We’ll probably never realize the distance Jesus traveled from the throne of heaven to the soil of earth; but God sent His own Son to forever fix our problem of sin, death and hell. Since asking “Why?” leaves us empty, I suggest a better question to ask is “How?”
Lord, how could you love us so much? A lesser god would have hit “reset” and cancelled the human experiment. You could have done that. For some reason You love us so much you paid an immeasurable price with the life of your Son, knowing we could never fully understand or appreciate it. Rather than "why?”, I think "how could you love us so much?” will be a much more satisfying pursuit.
Tuesday, August 5, 2008
Walking again
During therapy yesterday Susan walked for the first time in about two months, using a walker to amble out of the therapy room, across the lobby and back. Her parents were there to share the joy. We're thankful she’s been making great progress physically and has continued to become more aware and alert. One of her therapists noted how much she’s been talking and described her speech as “word salad,” which is fitting since she easily combines images from her sensory menu into an idea she’s trying to express. She’ll probably benefit from some more speech therapy to help her thoughts become more grounded; but at least she’s talking and interacting.
The other afternoon Austin asked his mom if she was having a good day. Ever the sarcastic quipster, she said, “Oh yes, this morning I looked at the calendar and jumped for joy.”
The other afternoon Austin asked his mom if she was having a good day. Ever the sarcastic quipster, she said, “Oh yes, this morning I looked at the calendar and jumped for joy.”
Thursday, July 31, 2008
Rehab therapy, more chemo – a good week
Susan completed her first full week at Broadway by the Sea and is receiving excellent care. The nurses and assistants provide compassionate help and attend well to Susan’s needs for medication, hygiene, and comfort. She has mild back pain most of the time, but she tolerates it well. I visit her once or twice a day and happened to be there earlier this week when she was having a physical therapy session. She used the automatic exercise bike that works legs and arms at a programmed speed and records the patient’s own exertion separately for left and right sides. It’s a useful tool for muscle strengthening and allowing therapists to track her progress. They also applied electrical stimulation to her arms and legs to help build muscle fiber. I watched as the team helped Susan stand from her wheelchair and transfer her weight from side to side while holding parallel bars, then sit down slowly. She still needs “max assist” right now, but has already made progress from last week.We made a jail break yesterday for our first field trip to UCLA for chemotherapy. She tolerated the long ride well; and the chemo session went smoothly. We’re thankful for no apparent tumor growth from June to July – she’ll have her next MRI in four weeks. It was wonderful to spend a whole day together.
I’ve begun to learn what loneliness feels like since Susan has been at the rehab hospital (and will be for weeks) and I’m spending more time at home and at work again. It’s not that I’m alone – I’m just lonely for her. My longing for Susan feels like there’s a torrent of water rushing through me, through my heart, and I’m being emptied but not filled up again. Yet the peace of God is a great comfort, as is seeing her each day.
Overall, I’m thankful for how things are working out, how God has provided. Her spinal fracture could have been much worse; and I believe she’ll heal quickly. The event of her fall actually brought about the transition from UCLA to rehab, something Susan needed even before she fell. The good thing now is she’s getting relief from the muscle decline brought on by hydrocephalus and decadron, while she’s mentally able now to participate in therapy and get stronger. Susan feels lonely too, but she’s doing well overall. In another sign of God’s provision, I recall Susan telling me that when she was a girl she enjoyed being by herself in her room or in the bath, listening to music on the radio. As I left her alone in her room with radio music on earlier this week, she was content. I realized how well God has prepared her to handle this season.
Susan is still funny. I read her the next day’s menu and asked her if she likes the food. (Keep in mind this is hospital chow, institutional style. I think it’s just tolerable and I’m glad I don’t have to eat it. Also note that she’s stuck in bed and couldn’t walk away if her life depended on it.) She said she likes the food, and “it’s one more reason to keep coming back every day.”
Another time I was talking with Susan by her bedside when a nurse charged in for a second, one of dozens of daily interruptions when one of the staff comes in and needs to do something. As we turned toward her, the nurse said, “Oh, I’m just checking on you, I’m doing rounds,” and left. Susan sort of rolled her eyes and scoffed, “At least she’s not doing squares.”
Another time I was talking with Susan by her bedside when a nurse charged in for a second, one of dozens of daily interruptions when one of the staff comes in and needs to do something. As we turned toward her, the nurse said, “Oh, I’m just checking on you, I’m doing rounds,” and left. Susan sort of rolled her eyes and scoffed, “At least she’s not doing squares.”
Thursday, July 24, 2008
Skilled nursing and rehab, finally
After a spate of false starts, Susan finally was transferred to a skilled nursing and rehab hospital late yesterday. It’s called Broadway by the Sea, located at 2725 E Broadway in Long Beach (between Redondo and Cherry). Susan is in Room 33. The five or so other hospitals we tried were at capacity for patients with acute needs, had no available bed, lacked a contract with our health insurance company, or had an undesirable reputation. With several additional days at UCLA to work the process, accomplishing the next step is a huge relief. We are most eager for her to begin her therapy so she can gain strength and return home. Yesterday was Susan’s birthday, an unusual one under the circumstances. She ended the day getting settled in her new location and being surrounded by family, cards and flowers. She even enjoyed a slice of fresh peach pie. Life is a gift.
Sunday, July 20, 2008
A fall and a fracture
Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt. She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.
We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.
After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.
When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.
Tuesday, July 15, 2008
Improving slowly and gradually
Susan has improved gradually since last week’s lumbar puncture for hydrocephalus and is somewhat stronger, more alert, and more responsive. We haven’t seen the dramatic rebound she experienced last November, but I’m grateful for the progress so far. She’s still pretty confused most of the time about where she is and what’s going on, and she’s doing her best to make sense of things. I’ve noticed she can pull her wits together for a period of time when needed, a taxing effort that requires extra rest afterward. We’ll be back at UCLA this week for another MRI, clinical exam and chemo treatment.
These months since Susan’s tumor progression was diagnosed in April have been especially hard. Two of our brain buddy friends have died since then, following two others since last fall. The circumstances seem to point to an inevitability that no one wants to accept. But I continue to receive encouragement from the Lord in a variety of ways to hold fast to Susan’s healing. Paul’s prayer for the Ephesians (1:18) speaks to me also, “that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.” God’s Word is full of ordinary people who faced impossible circumstances and were challenged to believe what God said rather than what they saw. Even a partial list of these accounts can instruct and encourage us – Noah, Job, Moses, David, Elijah, Daniel, Nehemiah, Zechariah, John, Joseph & Mary, the Acts of the Apostles, and the dozens of people healed by Jesus. Trying to put ourselves in their place as they face their situations and see God intervene can help prepare us to face our own difficulties. Even so, I say facing our own trials is harder because we don’t know the outcome. But the fact is, neither did these who went before us. Like us, they had two things: their insurmountable circumstances on one hand and God on the other. It still comes down to faith – “Lord, I believe. Help my unbelief!” (Mark 9:24) We continue to trust God and know we’re in good company.
These months since Susan’s tumor progression was diagnosed in April have been especially hard. Two of our brain buddy friends have died since then, following two others since last fall. The circumstances seem to point to an inevitability that no one wants to accept. But I continue to receive encouragement from the Lord in a variety of ways to hold fast to Susan’s healing. Paul’s prayer for the Ephesians (1:18) speaks to me also, “that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.” God’s Word is full of ordinary people who faced impossible circumstances and were challenged to believe what God said rather than what they saw. Even a partial list of these accounts can instruct and encourage us – Noah, Job, Moses, David, Elijah, Daniel, Nehemiah, Zechariah, John, Joseph & Mary, the Acts of the Apostles, and the dozens of people healed by Jesus. Trying to put ourselves in their place as they face their situations and see God intervene can help prepare us to face our own difficulties. Even so, I say facing our own trials is harder because we don’t know the outcome. But the fact is, neither did these who went before us. Like us, they had two things: their insurmountable circumstances on one hand and God on the other. It still comes down to faith – “Lord, I believe. Help my unbelief!” (Mark 9:24) We continue to trust God and know we’re in good company.
Wednesday, July 9, 2008
CT scan and lumbar puncture at UCLA
Susan was admitted to the ER at UCLA Medical Center yesterday morning for a CT scan and lumbar puncture (spinal tap). The head scan confirmed hydrocephalus, so neuro-radiologist Pablo Villablanca drew off about 30cc’s of fluid. Now that’s what I call a brain drain. We waited until about 9pm for initial lab tests that proved negative for infection. Overall, it was a great day since we were able to get after the problem after weeks of her languishing. Susan also had the benefit of being treated in the one-week old Ronald Reagan UCLA Medical Center. It’s been in the works since the 1994 Northridge earthquake damaged the old hospital, it cost over $1 billion to build, and is now the most advanced hospital in the country. Once again, we had a terrific experience with the caring professionals at UCLA and are grateful to have the best care available for Susan. Meanwhile, the lab will grow cultures over the next several days to rule out a return of fungal meningitis. The continued hydrocephalus following last week’s valve adjustment confirms Susan’s shunt is blocked, so we’ll follow up with her oncologist and neurosurgeon soon and will probably schedule a series of LPs to drain fluid on a regular basis. Replacing the shunt will have to wait as long as she’s on Avastin since it causes bleeding and prevents having a surgery. By mid-day today, Susan was still very tired and profoundly confused. We certainly hope the next couple of days bring the dramatic improvement she experienced with November's hydrocephalus treatment.
Saturday, July 5, 2008
No relief
In the three days since the valve adjustment on her lumbar shunt, Susan’s condition remains the same, if not slightly worse. She slept from about 3pm Thu to about 8am Fri – a span of over 17 hours with only brief waking periods with the desire to sleep some more. Yesterday as I was getting her up from her wheelchair she asked, “Am I alive?” Since she doesn’t seem to be responding to the adjustment, perhaps the shunt is blocked so the hydrocephalus persists. I’ve emailed her doctor and will watch Susan carefully tomorrow in case she needs medical help right away.
Recently, Susan has started chewing her pills instead of swallowing them. I cringe when she does it because some of them are designed to be absorbed slowly – plus they taste horrible. I try my best to stop her from chewing and wash them down with water. This morning she was doing it again. I told her to stop chewing and swallow water. She crunched each pill as I gave it to her. I would remind her to hold it on her tongue, to not move her teeth. She wouldn’t get it and would start chewing. As it went on, I spoke sharply and raised my voice –
More chewing. More sharp words from me as my frustration turned to anger. Now I was yelling at her.
More chewing again. She just looked at me. I left the room not knowing what to do. I was fuming and helpless. I asked God to help me – I am helpless with this and don’t know what to do. I returned and explained again how frustrated I am that she was chewing her pills. I told her how angry I was. I asked her if she forgot how to swallow pills. She looked back at me with no expression. I realized she couldn’t help it. She really couldn’t. It broke my heart. I apologized with tears to Susan with tears for yelling at her. I’ve never yelled at her before. Not like that. I realize some couples communicate by yelling – but we never have. It’s just not us. Even after passionate disagreements (often about money) or the hard-working out sensitive issues in our marriage (we’ve had plenty), we always have made up quickly because neither of us can’t stand being out of fellowship with each other. As I cried, I told Susan how hard her illness is on her and on me and how desperately I want her to get better. I kept grieving for a few minutes as I cleaned up the dishes. Then I sat down with her again.
This is tough stuff. Tonight when I put Susan to bed, I lay my head on her pillow before we prayed.
Susan’s words like these are so mysterious. I know she’s processing a lot while she sleeps – and she’s been sleeping a lot. I don’t know how much she really knows or how much she’s able to put into words. I know it’s a process. There is still so much that is hidden.
Recently, Susan has started chewing her pills instead of swallowing them. I cringe when she does it because some of them are designed to be absorbed slowly – plus they taste horrible. I try my best to stop her from chewing and wash them down with water. This morning she was doing it again. I told her to stop chewing and swallow water. She crunched each pill as I gave it to her. I would remind her to hold it on her tongue, to not move her teeth. She wouldn’t get it and would start chewing. As it went on, I spoke sharply and raised my voice –
Stop it! Stop chewing your pills! You’re supposed to swallow them! …Do you know why I’m speaking to you like this? (I’m doing something wrong with my medicine.) Yes, what are you doing wrong? (I’m letting the lighter parts go down first.) You’re chewing your pills when you’re supposed to swallow them. Do you understand? (Yes.) Here. Here’s another pill. Put it on your tongue and swallow it with the water. Ok? (Ok.)
More chewing. More sharp words from me as my frustration turned to anger. Now I was yelling at her.
I am so frustrated with you! Stop chewing your pills! You’re supposed to swallow them!
More chewing again. She just looked at me. I left the room not knowing what to do. I was fuming and helpless. I asked God to help me – I am helpless with this and don’t know what to do. I returned and explained again how frustrated I am that she was chewing her pills. I told her how angry I was. I asked her if she forgot how to swallow pills. She looked back at me with no expression. I realized she couldn’t help it. She really couldn’t. It broke my heart. I apologized with tears to Susan with tears for yelling at her. I’ve never yelled at her before. Not like that. I realize some couples communicate by yelling – but we never have. It’s just not us. Even after passionate disagreements (often about money) or the hard-working out sensitive issues in our marriage (we’ve had plenty), we always have made up quickly because neither of us can’t stand being out of fellowship with each other. As I cried, I told Susan how hard her illness is on her and on me and how desperately I want her to get better. I kept grieving for a few minutes as I cleaned up the dishes. Then I sat down with her again.
Do you know why I’m crying? (Over of the loss of your father.) Actually, my father is still alive – I just want you to get better, that’s all. I know you understand, don’t you? (She nodded.). Thank you for understanding. (You’re welcome.)
This is tough stuff. Tonight when I put Susan to bed, I lay my head on her pillow before we prayed.
What’s on your mind right now? (I just need to finish my job and then I can be done.) What job is that? (I need to deliver the thing I came here to deliver. Then I can go on.) What is it you need to deliver? (silence.) Susan? What do you need to deliver? (silence.) Did someone give it to you? (Yes.) …How can I help you do the job you need to do? (You can take an active role in it.) Ok, I’ll do that. I’ll take an active role. (Thank you.)
Susan’s words like these are so mysterious. I know she’s processing a lot while she sleeps – and she’s been sleeping a lot. I don’t know how much she really knows or how much she’s able to put into words. I know it’s a process. There is still so much that is hidden.
Wednesday, July 2, 2008
Shunt adjustment and a hopeful sign
Dr. Bergsneider adjusted Susan’s lumbar shunt to relieve her hydrocephalus today. There’s a valve about the size of a watch battery located under the skin in her right lower back. He found it difficult to position the magnetic adjustment tool over the valve and know for sure he changed the setting, so he did his best and sent Susan to have a couple of x-rays taken for confirmation. The x-rays showed the adjustment didn’t work, so he scheduled her for an afternoon procedure using a real-time digital imaging system called x-ray fluoroscopy. The instant feedback allowed him to place the tool in the right spot and know he had the right setting. Usually these are cranial shunts with the valve located under the scalp and are adjusted easily. With Susan’s lumbar shunt there’s no hard base under valve and lots of tissue around it, so he really had to push and prod to get it done.He prepared me for the possibility that the shunt may be blocked, in which case today’s valve adjustment won’t help. If her shunt is blocked, it would be troublesome because a surgical replacement can’t be done when a patient like Susan is being treated with Avastin. It causes bleeding that prevents wounds from healing. The alternative could be a series of lumbar punctures (spinal taps) to drain the fluid manually, but even these could pose a bleeding problem. We didn’t dwell too long on these what-ifs. We’ll know within a few days whether her symptoms improve and will take it from there. We already had a hopeful sign this evening when Susan was more alert and spoke more than she has in weeks. Hopefully, the fog is lifting.
Monday, June 30, 2008
Biding our time until Wednesday
Today was another day of basic functioning for Susan – sleeping (a lot of it), eating, bathing, etc. We are biding our time until her shunt adjustment on Wednesday. I am absolutely counting on her present symptoms being related to hydrocephalus and being relieved once the shunt valve is adjusted. I’m also expecting her mind to clear and her strength to return so she can begin rehab once again. Without such a turnaround, I can’t see her making much progress. She’ll have a lot of work to do. Meanwhile, we trust the Lord and wait.
We missed church yesterday. After we were showered, dressed, breakfasted, morning-medicated, and once again impossibly late, Susan didn’t have the strength for it. I made the decision to stay home while we sat at the kitchen table. I suggested we read some selections from Streams in the Desert we’d missed recently so we could at least devote our hearts toward God for a little while. The entry for June 29 pierced my heart. I began weeping as I read. When I finished, I broke down sobbing as I lay my head in Susan’s lap. The weight of what she’s going through, what I’m going through, and what we’re going through (so much of these are separate things) – the weight of it all broke me down. It’s all so much. At once, something beautiful happened. Susan consoled me. She moaned an understanding “Ohhhh,” and rocked and patted my head in her lap. Even in her diminished state, my wife comforted me like she always has when I’m having a hard time. Her care for me was instantly and deeply satisfying. She helped me uncap and let the fizz out. I felt better right away.
As for what I had read, I can’t describe it. For me, its truth went deep and nailed me. If you’d like to read it yourself, here it is: "There We Saw the Giants."
We missed church yesterday. After we were showered, dressed, breakfasted, morning-medicated, and once again impossibly late, Susan didn’t have the strength for it. I made the decision to stay home while we sat at the kitchen table. I suggested we read some selections from Streams in the Desert we’d missed recently so we could at least devote our hearts toward God for a little while. The entry for June 29 pierced my heart. I began weeping as I read. When I finished, I broke down sobbing as I lay my head in Susan’s lap. The weight of what she’s going through, what I’m going through, and what we’re going through (so much of these are separate things) – the weight of it all broke me down. It’s all so much. At once, something beautiful happened. Susan consoled me. She moaned an understanding “Ohhhh,” and rocked and patted my head in her lap. Even in her diminished state, my wife comforted me like she always has when I’m having a hard time. Her care for me was instantly and deeply satisfying. She helped me uncap and let the fizz out. I felt better right away.
As for what I had read, I can’t describe it. For me, its truth went deep and nailed me. If you’d like to read it yourself, here it is: "There We Saw the Giants."
Saturday, June 28, 2008
A view into darkness
Sometimes I don’t know why I write these intensely personal things my wife and are experiencing. I guess it’s just real life. It’s partly therapeutic for me, and for some reason, partly an obligation to make and share an account of it. I don’t want to betray Susan’s modesty, and I don’t believe I’m dishonoring her by including the context of her remarks. But she said some amazing things today that once again illuminate the darkness of her mental confinement. She can’t express exactly how she’s witnessing her world right now. I’m always trying to encourage, to play, to joke around. I’m relentless that way. Even so, her thoughts today alarmed me. As I wonder about their meaning, I hope her words merely express the level of disconnect she presently feels from the rest of the world and have no other momentum.
2pm. Susan was in the bathroom. Are you done? (If I’m done does that mean I’m dead? No, it doesn’t, does it?) Why did you ask that? (I’m just trying to understand this existence).
5pm. Susan was waking up. Come on, Susan, time to get up. It’s time to go potty. Potty like a rock – potty like a rock star…I want to rock n roll all night and potty every day…It’s my potty and I’ll cry if I want to…I went to a garden potty... (Everyone knew my name.) Hey, that’s right. You know the lyrics better than I do. (Then they must all be dead if they knew my name.) What do you mean? (They must all be dead because I’m dead, aren’t I?)
7pm. We were talking before dinner. Susan, are you sad? (Yes, a little.) What’s making you feel sad? (All the things I have to think about while I’m processing what’s going on.) What things are you thinking about that are making you sad? …are you thinking about the kids? (Yes.) What are you thinking about the kids that makes you sad? (The decisions they’re going to have to make.) Are you concerned you won’t be there when they make those decisions? (I guess so.) What else? …You said you’re sad from all the things you have to think about while you’re processing what’s going on. What else is making you sad? (The things I might have to go through.) Yeah, I can see why that would make you sad. Those are things we don’t have any control over, aren’t they? (Yeah.) Are you afraid to die? (No.) But you’re afraid of what might happen to you before then? (Yeah, a little.) I understand. Do you trust God? (Yes.) With God there’s always hope, isn’t there? (Yeah.) It’s okay to be sad, too, but we just don’t stay sad forever.
Friday, June 27, 2008
Plumbing the depths one year later
Today marks one year since Susan returned from Clearlake on the day after her fated CAT scan. After a surreal 12 months and her most recent ebb, we keep plumbing the depths of Susan’s mental deterioration. Sometimes the things she says are revealing on a variety of levels, from the ordeal of brain trauma to her persistently good humor. Susan’s words are in parentheses.
4pm. Susan was waking up from a long nap on the lounge chair in the patio. What are you doing? (I’m planning my strategy.) Really? What strategy is that? (I’m thinking of the things I can take control of.) What kinds of things do you want to take control of? …let’s start small. (Nature.) That’ll do. Or how about taking control of the world? (That will be fine.)
Wednesday, June 25, 2008
New equipment
Susan’s wheelchair and bedside commode were delivered today, two necessities that tell of her recently worsened condition. Both are welcome tools right now. The chair reduces the risk of her falling while cutting the time it can take to move from place to place in the house, to the car, at church, and so on. The commode chair gives her a more stable seat over the toilet and makes for less of a lift for me when transferring her. As valuable as I find these to be, we’re counting on them being temporary. I hope to migrate from the wheelchair back to the walker, and then back to the cane. That’s a worthy goal.
Tuesday, June 24, 2008
MRI, hydrocephalus, Avastin
Yesterday’s UCLA visit brought some much-needed good news. Susan’s MRI revealed enlarged ventricles that indicate the build-up of fluid in her brain – hydrocephalus. While that’s not good news alone, it might mean adjusting the shunt that was implanted last fall for the same condition could bring relief from Susan’s terribly weakened state. The last adjustment brought quick and dramatic improvement and months of relief. But tumor progression apparently can change conditions in the brain and cause a return of hydrocephalus in some cases. I am waiting eagerly for the consensus at tomorrow’s brain tumor board meeting when Dr. Nghiemphu will present Susan’s scans and her opinion to the other neuro-oncologists and neurosurgeons. Perhaps Dr. Bergsneider who implanted the shunt can make the adjustment soon.
Yesterday’s MRI also showed a big decrease in brain swelling, more good news. It looks like two treatments of Avastin have been effective. But there’s no definite reading on tumor growth right now since they’ll need to see a series of scans without swelling for a meaningful comparison. At least we know there are no new tumor sites. Susan had another Avastin infusion yesterday, but skipped the CPT-11 chemotherapy this time since its side-effects may be complicating her symptoms. She’s still extremely weak, tired, and mentally slow, needing full-time custodial care. We’ll have a wheelchair delivered tomorrow to help with mobility and hope we won’t need it for long. With so much muscle loss from steroids, she’ll need to work a while to get her strength back. Meanwhile, we’re doing a fast decadron taper to 6mg from 8mg this week and to 4mg next week. Susan’s whole ordeal recently has been puzzling since there can be several possible causes for her weakness – tumor growth, decadron, chemo, or now hydrocephalus. We hope for some action and relief, and soon.
I’m coming to know the challenges of dealing with acute long-term care needs. They’re emotional – there’s the pain of seeing your loved one in a compromised state. The challenges are physical – lifting, transferring, bathing, dressing, and doing them over and over again. It’s a grind. The challenges are psychological – the routine pressures of daily life do not stop just because your helpless loved one needs what they need when they need it. The pace of both worlds is hard to reconcile and the contrast is enormous. The challenges are spiritual – waiting on the Lord can seem to be endless when your circumstances intensify. I identify with the Psalmist who cries out, “How long, O Lord? Will you forget me forever? How long will you hide your face from me?” But somehow, God meets our needs everyday with peace for emotional pain, rest for a weary body, strength for a troubled mind, and His presence when hope has yet to be realized. This is so hard – and God is so good.
Yesterday’s MRI also showed a big decrease in brain swelling, more good news. It looks like two treatments of Avastin have been effective. But there’s no definite reading on tumor growth right now since they’ll need to see a series of scans without swelling for a meaningful comparison. At least we know there are no new tumor sites. Susan had another Avastin infusion yesterday, but skipped the CPT-11 chemotherapy this time since its side-effects may be complicating her symptoms. She’s still extremely weak, tired, and mentally slow, needing full-time custodial care. We’ll have a wheelchair delivered tomorrow to help with mobility and hope we won’t need it for long. With so much muscle loss from steroids, she’ll need to work a while to get her strength back. Meanwhile, we’re doing a fast decadron taper to 6mg from 8mg this week and to 4mg next week. Susan’s whole ordeal recently has been puzzling since there can be several possible causes for her weakness – tumor growth, decadron, chemo, or now hydrocephalus. We hope for some action and relief, and soon.
I’m coming to know the challenges of dealing with acute long-term care needs. They’re emotional – there’s the pain of seeing your loved one in a compromised state. The challenges are physical – lifting, transferring, bathing, dressing, and doing them over and over again. It’s a grind. The challenges are psychological – the routine pressures of daily life do not stop just because your helpless loved one needs what they need when they need it. The pace of both worlds is hard to reconcile and the contrast is enormous. The challenges are spiritual – waiting on the Lord can seem to be endless when your circumstances intensify. I identify with the Psalmist who cries out, “How long, O Lord? Will you forget me forever? How long will you hide your face from me?” But somehow, God meets our needs everyday with peace for emotional pain, rest for a weary body, strength for a troubled mind, and His presence when hope has yet to be realized. This is so hard – and God is so good.
Brain tumor vaccine featured on KTLA news
Dr. Liau and the brain tumor vaccine she's helping to develop were featured in a segment on KTLA news last night called "Vaccine Helps Victims of Brain Cancer." You can browse for it and other reports featuring the UCLA and Cedars Sinai teams at http://ktla.trb.com/news/health/
Sunday, June 22, 2008
In Loving Memory of Jeff Nord
Our friend Jeff Nord passed away on Friday night after losing his year-long battle with brain cancer. It happened too fast and still seems unbelievable. He was Jayne’s husband, Andrew’s, Zack’s and Delaynee’s father, a leader at Emmanuel Church, and an inspiration to many. We thank God our Father for the work of His son Jesus Christ – that death has been swallowed up in victory and Jeff is with the Lord. We will miss our friend Jeff and we pray for grace, strength and peace for Jayne and her family.
Friday, June 20, 2008
The very basics
This has been a hard week for Susan and me since she’s presently in a “barely there” existence most of the time. Life is focused on the very basics of sleeping, eating, hygiene, and moving to the places where these things are done. She typically has a 20 to 60 minute period of better alertness right after waking before fatigue sets in again. Sometimes she’ll just as well sleep again as be awake after a period of sleep. I did not anticipate how hard this would be. Susan needs 100% supervision right now. My time is totally focused on her with a few hours here and there to try to do an errand or get something else done around the house, which I never seem to accomplish completely. It’s hard to distinguish one day’s activities from another – repetitive labors sort of blend together. Lifting her all the time is a strain. I long for Susan to be independent again and can only imagine what it’s like for her.
We had a nurse and a physical therapist visit from a home health agency yesterday. The nurse asked me a bunch of questions and did a basic exam on Susan. Later, the p/t asked me a bunch of questions and did a few exercises with Susan. I was disappointed. Each one visited so briefly and will have limited visits based on insurance provisions. I should have known better than to expect they would be able to improve her situation drastically or quickly – that’s going to take time. I’m glad the p/t reminded me how quickly a person’s muscles will deteriorate when they sleep all the time since I’ve been accommodating Susan’s need to rest mostly. But weakness begets weakness – she needs to do 4-5 sets of exercises each day to fend it off. She doesn’t say much these days, but her attitude remains good in spite of her generally depressed state. She says she’s going to keep trying and not give up.
One afternoon this week Susan became irritable and impatient – not a common state of mind. A few hours later I mentioned she seemed sad and asked her why. She said it’s hard to communicate. As I probed her thoughts a little more, she related to me she’ll have a thought or an idea she wants to express but can’t get the words for it. I agreed that would be really frustrating and offered to help her. We decided that when I notice she’s been quiet for a period of time, I’ll ask her if there’s anything she’s trying to say so we can figure it out together. It’s been a better idea than a reality since she usually can’t verbalize the topic in mind. I’m left to throw out ideas like, “Are you thinking about living or dying, about the kids or me, or about what’s on talk radio right now?” Sometimes it works. Sometimes she’s not thinking about anything. At least it may make her feel better that someone is trying to understand her.
We had a nurse and a physical therapist visit from a home health agency yesterday. The nurse asked me a bunch of questions and did a basic exam on Susan. Later, the p/t asked me a bunch of questions and did a few exercises with Susan. I was disappointed. Each one visited so briefly and will have limited visits based on insurance provisions. I should have known better than to expect they would be able to improve her situation drastically or quickly – that’s going to take time. I’m glad the p/t reminded me how quickly a person’s muscles will deteriorate when they sleep all the time since I’ve been accommodating Susan’s need to rest mostly. But weakness begets weakness – she needs to do 4-5 sets of exercises each day to fend it off. She doesn’t say much these days, but her attitude remains good in spite of her generally depressed state. She says she’s going to keep trying and not give up.
One afternoon this week Susan became irritable and impatient – not a common state of mind. A few hours later I mentioned she seemed sad and asked her why. She said it’s hard to communicate. As I probed her thoughts a little more, she related to me she’ll have a thought or an idea she wants to express but can’t get the words for it. I agreed that would be really frustrating and offered to help her. We decided that when I notice she’s been quiet for a period of time, I’ll ask her if there’s anything she’s trying to say so we can figure it out together. It’s been a better idea than a reality since she usually can’t verbalize the topic in mind. I’m left to throw out ideas like, “Are you thinking about living or dying, about the kids or me, or about what’s on talk radio right now?” Sometimes it works. Sometimes she’s not thinking about anything. At least it may make her feel better that someone is trying to understand her.
Monday, June 16, 2008
Out of it
After doing some grocery shopping after the boys came home from school while Susan slept, I came home to wake her so we could meet a psychologist who may help our kids better handle their mom’s situation. (I had asked one of our brain buddies Cristina Zavaleta if she knew of a counselor since her husband Hank is five years in to his GBM journey. Although I think I have good levels of communication with our kids, I don’t want to ignore any resource that might help them cope. It’s theirs if they need it.) When I woke Susan, her lack of reaction startled me. She was looking straight ahead at me but didn’t seem to see me. She didn’t respond to my greeting. I wondered if she was having a seizure as I raised my voice to get her attention. She responded, but ended up being exceptionally weak and disoriented the whole evening. I really shouldn’t have brought her out of the house, but didn’t have a choice since we were racing the clock as we left. I also hoped a walk and a visit might revive her. It didn’t. Getting to and from the doctor’s office took forever and seemed to drain Susan even more. It’s clear she needs to use her walker again and not just her cane – the first time in over seven months.. While the lower dose of decadron might be lifting her symptoms on one hand, last week’s chemo treatment might be pulling her down on the other. I pray it’s not tumor progression. We’ll find out in a week.
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