Wed 02/27/08
We went up to UCLA for another MRI and neuro-oncology visit with Dr. Nghiemphu. The scan shows swelling in Susan’s brain similar to last month and thankfully, no tumor growth.
Since we recently tapered her down from 15 to 10mg of prednisone (a steroid that counters swelling), the doctor is interested to see another scan in March after a solid month at 10mg. After being on powerful steroids for over eight months and experiencing the moon-face and weight gain that are common side effects, Susan’s body is on the threshold of producing its own steroids again at this dosage. I’m eager for her to be off the drug as long as she doesn’t need it.
The doctor and her staff have been continually pleased to see Susan’s symptoms improving with each visit couple by lack of tumor growth. So far, so good.
Fri 02/29/08
With today’s Rehab Without Walls conference call, Susan was discharged from therapy after meeting all of her functional goals for physical, occupational and speech. We are so thrilled she’s reached this level independence. She can be at home on her own, makes breakfast and lunch meals, keeps up with the laundry, and has begun light workouts at the gym. I was impressed with our rehab team, their care and professionalism, and how they translated normal household tasks into measurable objectives. After getting to know these ladies with such regular visits, Susan will miss them.
Our family held graveside and memorial services for my Grandma today. It was terrific family time and a too-brief reunion with relatives and long-time family friends. The services at Messiah Lutheran Church in Downey were moving and Spirit-filled, a fitting tribute to a one-of-a-kind lady. I learned many valuable things from her, including how to think young and stay plugged in to life while growing old. We celebrate her long life with us and her going home to be with the Lord. It’s so wonderful to lay a loved one in the grave and know that Jesus has conquered death to secure our heavenly reunion –we praised Him well for that. See the link at the left for a glimpse at the life of this remarkable woman.
Friday, February 29, 2008
Tuesday, February 26, 2008
Grandma Ellen goes to Heaven
Mon 02/25/08
My 100 year-old grandmother passed away last night in her sleep. After struggling with dementia in recent years, having recent complications from congestive heart failure and becoming unable to walk only a few weeks ago, she truly was ready to go to heaven. I joined my mother, Aunt Evelyn and Cousin Cathy at the nursing home to offer comfort in dealing with an event that was expected but never easy. In spite of her struggle of the past weeks as her body failed and she reckoned with her dying, the ultimate peacefulness of her passing reminded me that death has nothing to do with evil – no matter what our horror film culture would have us believe. For the Christian, death is our ultimate transition from the earthly bonds of time, flesh, and deterioration into the presently unimaginable freedom of being completely with God and beholding Him face to face in all of His glory. I marvel to wonder what that’s like for Grandma now.
My 100 year-old grandmother passed away last night in her sleep. After struggling with dementia in recent years, having recent complications from congestive heart failure and becoming unable to walk only a few weeks ago, she truly was ready to go to heaven. I joined my mother, Aunt Evelyn and Cousin Cathy at the nursing home to offer comfort in dealing with an event that was expected but never easy. In spite of her struggle of the past weeks as her body failed and she reckoned with her dying, the ultimate peacefulness of her passing reminded me that death has nothing to do with evil – no matter what our horror film culture would have us believe. For the Christian, death is our ultimate transition from the earthly bonds of time, flesh, and deterioration into the presently unimaginable freedom of being completely with God and beholding Him face to face in all of His glory. I marvel to wonder what that’s like for Grandma now.
I am privileged to have known this special person who was my grandmother. Here is a brief tribute: Eleanore Fredericke Marie Vogel
Friday, February 22, 2008
Winding up rehab, pressing on
Fri 02/15/08
On our monthly conference call with our team from Rehab Without Walls, each therapist gave her goal-based evaluation of Susan's progress toward independence. The physical therapist and social worker each discharged Susan, leaving the occupational and speech therapists two more weeks of visits before full discharge. Susan has advanced nicely within each discipline and is grateful to feel more like a "real person" again. It's a huge contrast from six months ago when she needed constant supervision to today, when she's able to be on her own at home doing tasks like laundry and beginning to cook again. Thanks to God.
Sun 02/17/08
Susan and I talked for a few minutes today after church about how she's not afraid to die. She said it will be so much better to be with the Lord than in this world and that she's really looking forward to it. Not that she thinks it will happen anytime soon, but she's not afraid about it. I can say we're in total agreement, each of us neither wanting to die nor wanting to linger when the time comes. (In fact, when it's my turn, I plan to get a running start, make a great leap, and fly to heaven.) I was reflecting this week on the precious peace that we know as we treasure the gift of life each day while not clutching some vain idea of permanence. Paul said it plainly, "For to me to live is Christ, and to die is gain." This balanced perspective is itself a gift, for which I'm grateful.
Tue 02/19/08
We had a follow-up visit with Dr Syed, one of the partners at the Long Beach Memorial Radiation Oncology department. It's been four months since Susan completed her radiation treatments. He agrees with the UCLA neuro-oncology staff that Susan's improved symptoms are a welcome sign in spite of increased brain swelling in recent MRIs compared to October. Susan will have her next follow-up in May.
Thu 02/21/08
Susan had a follow-up exam with our chiropractor, Jim Augustine, who had done a biofeedback type of scan on her a couple of weeks ago. His system gets detailed information on all of the body’s organs and systems, similar to the “energy medicine” treatments she had several months ago but with better science. He’s providing her with bio-cranial adjustments and nutritional supplements, and will do future scans to track her progress. His treatments complement and do not interfere with her oncology stuff. We are thankful for his great care and commitment to her healing.
On our monthly conference call with our team from Rehab Without Walls, each therapist gave her goal-based evaluation of Susan's progress toward independence. The physical therapist and social worker each discharged Susan, leaving the occupational and speech therapists two more weeks of visits before full discharge. Susan has advanced nicely within each discipline and is grateful to feel more like a "real person" again. It's a huge contrast from six months ago when she needed constant supervision to today, when she's able to be on her own at home doing tasks like laundry and beginning to cook again. Thanks to God.
Sun 02/17/08
Susan and I talked for a few minutes today after church about how she's not afraid to die. She said it will be so much better to be with the Lord than in this world and that she's really looking forward to it. Not that she thinks it will happen anytime soon, but she's not afraid about it. I can say we're in total agreement, each of us neither wanting to die nor wanting to linger when the time comes. (In fact, when it's my turn, I plan to get a running start, make a great leap, and fly to heaven.) I was reflecting this week on the precious peace that we know as we treasure the gift of life each day while not clutching some vain idea of permanence. Paul said it plainly, "For to me to live is Christ, and to die is gain." This balanced perspective is itself a gift, for which I'm grateful.
Tue 02/19/08
We had a follow-up visit with Dr Syed, one of the partners at the Long Beach Memorial Radiation Oncology department. It's been four months since Susan completed her radiation treatments. He agrees with the UCLA neuro-oncology staff that Susan's improved symptoms are a welcome sign in spite of increased brain swelling in recent MRIs compared to October. Susan will have her next follow-up in May.
Thu 02/21/08
Susan had a follow-up exam with our chiropractor, Jim Augustine, who had done a biofeedback type of scan on her a couple of weeks ago. His system gets detailed information on all of the body’s organs and systems, similar to the “energy medicine” treatments she had several months ago but with better science. He’s providing her with bio-cranial adjustments and nutritional supplements, and will do future scans to track her progress. His treatments complement and do not interfere with her oncology stuff. We are thankful for his great care and commitment to her healing.
Tuesday, February 12, 2008
Struggling with chemo, working on vision
Sun 02/10/08
Susan struggled with fatigue and feeling ill as her monthly chemo doses accumulated during the week, but woke up feeling better and more rested on Saturday. She experienced a bit more visual loss one day this week for the second month in a row, described as dimness and holes in her field of vision. Since it coincided with her five days of chemo, we wonder if it's a side effect of the temodar for her.
We picked up Susan's new glasses on Friday at the So Cal College of Optometry, one pair for reading and one for distance. Tomorrow we'll have a consultation with Dr Ikeda, an optometrist who specializes in treatment of vision problems related to neurological disease and injury. We're looking forward to having his input on Susan's case.
We had a wonderful morning at church, including Susan's first visit back to her Sunday School class in over 8 months. Since her strength and stamina have improved so well, we no longer need to abbreviate our Sunday mornings so she can sleep before noon. We both enjoyed the deep and meaningful discussion led by our friend Vicki Gelberg about God's love as well as the milestone of Susan returning to the class that has fulfilled her so much. And since I'm not as involved in serving at church as I was before she got ill, I we can go together. It's great companionship. I like how God is doing a new thing.
Mon 02/11/08
We met with Dr Ikeda, who just happens to work with our long-time optometrist, Dr King, who just happens to specialize in neuro-optometric rehab, and who just happens to be deeply involved with an organization called NORA that is "dedicated to advancing the art and science of rehabilitation of the neurologically and cognitively injured." Coincidence? I don't think so. The Lord provides. Dr Ikeda gave Susan a thorough exam and recommended adjustments to her new eyeglass prescriptions. He spoke favorably about her prospects for regaining vision with therapy as the brain re-establishes broken connections, acknowledging that God is the ultimate healer. We will revisit in a month to check Susan's glasses again and evaluate therapy options.
We're asking God to give Susan antineoplastons, or the body's naturally occurring version of them called peptides. Dr Stanislaw Burzynski discovered decades ago that healthy humans have them, but cancer patients lack them – and they appear to be part of the body's main defense system against cancer. Dr Burzynski developed synthetic antineoplastons that he administers to cancer patients at his clinic in Houston TX. The results have been dramatic, with patients being CURED after a short time. His therapies are now being conducted under FDA clinical trials. Unfortunately, I learned not only are the trials for glioblastoma patients like Susan currently closed, but cancer patients who've had prior radiation or chemotherapy are not eligible.
So I figure let's ask God to give Susan the antineoplastons or peptides she's missing (and also Jeff, and Cathleen, and Elnora, and Kathy, and so on). But sometimes I wonder how specific our prayers should be. After all, it's God who heals, and He knows what we need. He's not finicky or capricious – it's not like He'd withhold healing He'd otherwise provide because we didn't ask for the right ingredients. That said, I'm aware of specific healing that God has given from specific prayers. Whatever the case, Lord have mercy!
Susan struggled with fatigue and feeling ill as her monthly chemo doses accumulated during the week, but woke up feeling better and more rested on Saturday. She experienced a bit more visual loss one day this week for the second month in a row, described as dimness and holes in her field of vision. Since it coincided with her five days of chemo, we wonder if it's a side effect of the temodar for her.
We picked up Susan's new glasses on Friday at the So Cal College of Optometry, one pair for reading and one for distance. Tomorrow we'll have a consultation with Dr Ikeda, an optometrist who specializes in treatment of vision problems related to neurological disease and injury. We're looking forward to having his input on Susan's case.
We had a wonderful morning at church, including Susan's first visit back to her Sunday School class in over 8 months. Since her strength and stamina have improved so well, we no longer need to abbreviate our Sunday mornings so she can sleep before noon. We both enjoyed the deep and meaningful discussion led by our friend Vicki Gelberg about God's love as well as the milestone of Susan returning to the class that has fulfilled her so much. And since I'm not as involved in serving at church as I was before she got ill, I we can go together. It's great companionship. I like how God is doing a new thing.
Mon 02/11/08
We met with Dr Ikeda, who just happens to work with our long-time optometrist, Dr King, who just happens to specialize in neuro-optometric rehab, and who just happens to be deeply involved with an organization called NORA that is "dedicated to advancing the art and science of rehabilitation of the neurologically and cognitively injured." Coincidence? I don't think so. The Lord provides. Dr Ikeda gave Susan a thorough exam and recommended adjustments to her new eyeglass prescriptions. He spoke favorably about her prospects for regaining vision with therapy as the brain re-establishes broken connections, acknowledging that God is the ultimate healer. We will revisit in a month to check Susan's glasses again and evaluate therapy options.
We're asking God to give Susan antineoplastons, or the body's naturally occurring version of them called peptides. Dr Stanislaw Burzynski discovered decades ago that healthy humans have them, but cancer patients lack them – and they appear to be part of the body's main defense system against cancer. Dr Burzynski developed synthetic antineoplastons that he administers to cancer patients at his clinic in Houston TX. The results have been dramatic, with patients being CURED after a short time. His therapies are now being conducted under FDA clinical trials. Unfortunately, I learned not only are the trials for glioblastoma patients like Susan currently closed, but cancer patients who've had prior radiation or chemotherapy are not eligible.
So I figure let's ask God to give Susan the antineoplastons or peptides she's missing (and also Jeff, and Cathleen, and Elnora, and Kathy, and so on). But sometimes I wonder how specific our prayers should be. After all, it's God who heals, and He knows what we need. He's not finicky or capricious – it's not like He'd withhold healing He'd otherwise provide because we didn't ask for the right ingredients. That said, I'm aware of specific healing that God has given from specific prayers. Whatever the case, Lord have mercy!
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