Thu 01/31/08
At yesterday's MRI and oncology visit at UCLA, Dr. Nghiemphu interpreted the image for us and explained how the tumor was highlighted with contrast. It was similar to last month's image. The higher contrast may be a result of tumor growth (not good), or of "radiation necrosis" – dead or dying tissue that sometimes results from radiation therapy (not necessarily bad). The shape and location of the tissue are consistent with necrosis -but the MRI isn't conclusive. Like last month, the doctor would be more concerned if Susan's symptoms were not improving. We will continue Susan's temodar chemotherapy on Sunday and keep watch on the tumor with another MRI next month.
She also examined Susan's eyes, but was unable to see any evident damage behind them. She recommends we visit a neuro-optometrist or ophthalmologist who can examine Susan more thoroughly. Although we know there was visual damage in the brain caused by stroke, radiation treatment can sometimes damage parts of the eyes themselves; so she wants to investigate further.
Otherwise, Susan continues her weekday therapies and is working hard. We'll continue the rehab visits at least through mid-February.
Our family is being lifted by our nightly devotions as we follow the scriptures and meditations provided by our church that follow each week's sermon. As we read in Luke 7 tonight, we talked about John the Baptist asking Jesus from prison to confirm his lordship. It's like, "Jesus, life hasn't turned out like I expected. Are you really who you say you are?" We know what wavering faith during hard times is like.
After answering John with a list of His miraculous acts, Jesus tells him, "Blessed is the man who doesn't fall away on account of me" – one of those profound statements that I've overlooked before. Even if he's the cause of our suffering, Jesus assures us of His kingdom power and urges us to hold on in faith. Staying strong in hope is a powerful remedy for circumstances that just don't make sense. We know our faith in our Almighty God will not be disappointed.
Thursday, January 31, 2008
Monday, January 28, 2008
The routine of rehab and chemo
Sun 01/27/08
The past two weeks have been full of therapy visits for Susan and part-time office hours for me. She continues to have great results with rehab and is becoming more familiar with doing household routines without needing constant supervision.
Susan had another Trader Joe's trip and prepared a lasagna dinner last weekend with the help of several therapists. Not only was it a delicious meal, it was another activity to help her feel like a normal person again.
Susan's attitude and sense of initiative are outstanding. She's had two episodes this month of diminished vision as she's experiencing lower light, more blind spots and less clarity. Overall, Susan feels good about her situation but has been more discouraged about not seeing well, mostly since we don't understand what's caused these lapses. They're at odds with her general improvement. We continue to pray.
We'll be back at UCLA this week for another MRI and consultation with the neuro-oncologist prior to beginning the next 5-day round of chemo.
Our focus remains "living with a malignant brain tumor," not dying from it. I see it as a matter of perspective, and a vital distinction. Even though longevity statistics for glioblastoma multiforme are poor, such statistics have nothing to do with Susan while she's alive – and the weight of them may only bring us down. I'd rather us fill our thoughts with life, healing, restoration and wholeness, since live or die, that's where we're headed anyway. And it's much more pleasant.
Here's Susan's journal entry from Thu 1/24:
I love that last thought – always hopeful.
The past two weeks have been full of therapy visits for Susan and part-time office hours for me. She continues to have great results with rehab and is becoming more familiar with doing household routines without needing constant supervision.
Susan had another Trader Joe's trip and prepared a lasagna dinner last weekend with the help of several therapists. Not only was it a delicious meal, it was another activity to help her feel like a normal person again.
Susan's attitude and sense of initiative are outstanding. She's had two episodes this month of diminished vision as she's experiencing lower light, more blind spots and less clarity. Overall, Susan feels good about her situation but has been more discouraged about not seeing well, mostly since we don't understand what's caused these lapses. They're at odds with her general improvement. We continue to pray.
We'll be back at UCLA this week for another MRI and consultation with the neuro-oncologist prior to beginning the next 5-day round of chemo.
Our focus remains "living with a malignant brain tumor," not dying from it. I see it as a matter of perspective, and a vital distinction. Even though longevity statistics for glioblastoma multiforme are poor, such statistics have nothing to do with Susan while she's alive – and the weight of them may only bring us down. I'd rather us fill our thoughts with life, healing, restoration and wholeness, since live or die, that's where we're headed anyway. And it's much more pleasant.
Here's Susan's journal entry from Thu 1/24:
Home sick with the flu today. I did keep my manicure & pedicure appointment
with Lexie by my side, and we came out with lovely toes and fingers. But I
didn't have any therapists come. We'll see what tomorrow brings.
I love that last thought – always hopeful.
Monday, January 14, 2008
Continued rehab therapy
Tue 01/08/08
Susan woke up with a headache, a bit of an upset stomach and fatigue today, to be expected during chemo especially on the max dose. Her vision is worse today, with greater overall darkness and more blind spots. We're concerned about what's causing it and we're praying. Aside from the cancer, visual healing is Susan's greatest desire. We're thankful for great improvement with memory and balance.
Sun 01/13/08
We enjoyed inspiring worship, teaching, and communion at church today to follow a full week of at-home therapies with Susan's rehab team. Her therapy activities for the week included washing and folding laundry, doing some cognitive activities, writing in her journal, and going to a restaurant – by strange coincidence it was Red Robin, where Lexie served Susan and her therapist, Connie.
With nearly seven months since Susan's initial diagnosis; we realize she is living with what's left of her malignant brain tumor. We focus is on living with it and not dying from it. We see how far she's come with improved memory, alertness, and strength and know as long as the amount of remaining tumor stays small, her prognosis is good. We are confident that God is healing her progressively while helping us learn and grow in faith along the way. It's a process we're learning to embrace. We are continually aware that in this unimaginable season for us and families like the Nords, the Litherlands, the Kobles, the Marcades (just a few of the cancer-afflicted), our church family prays and gives and loves and grieves and prays some more – and somehow, we all grow stronger through suffering. God is so good.
Meanwhile, our friend Wendi Carpenter called last Wednesday evening from Michigan to say she had felt urged to pray more earnestly for Susan the morning before and wanted to know if anything was going on. In fact, Susan woke up Tuesday morning with mysteriously diminished vision, in greater darkness with more blind spots. It's no coincidence that Wendi was moved to pray just then – we are encouraged to know that God's Spirit is moving. In this instance He provided a glimpse of His larger plan, something He's doing on a deeper level. For now, we trust and pray.
Susan woke up with a headache, a bit of an upset stomach and fatigue today, to be expected during chemo especially on the max dose. Her vision is worse today, with greater overall darkness and more blind spots. We're concerned about what's causing it and we're praying. Aside from the cancer, visual healing is Susan's greatest desire. We're thankful for great improvement with memory and balance.
Sun 01/13/08
We enjoyed inspiring worship, teaching, and communion at church today to follow a full week of at-home therapies with Susan's rehab team. Her therapy activities for the week included washing and folding laundry, doing some cognitive activities, writing in her journal, and going to a restaurant – by strange coincidence it was Red Robin, where Lexie served Susan and her therapist, Connie.
With nearly seven months since Susan's initial diagnosis; we realize she is living with what's left of her malignant brain tumor. We focus is on living with it and not dying from it. We see how far she's come with improved memory, alertness, and strength and know as long as the amount of remaining tumor stays small, her prognosis is good. We are confident that God is healing her progressively while helping us learn and grow in faith along the way. It's a process we're learning to embrace. We are continually aware that in this unimaginable season for us and families like the Nords, the Litherlands, the Kobles, the Marcades (just a few of the cancer-afflicted), our church family prays and gives and loves and grieves and prays some more – and somehow, we all grow stronger through suffering. God is so good.
Meanwhile, our friend Wendi Carpenter called last Wednesday evening from Michigan to say she had felt urged to pray more earnestly for Susan the morning before and wanted to know if anything was going on. In fact, Susan woke up Tuesday morning with mysteriously diminished vision, in greater darkness with more blind spots. It's no coincidence that Wendi was moved to pray just then – we are encouraged to know that God's Spirit is moving. In this instance He provided a glimpse of His larger plan, something He's doing on a deeper level. For now, we trust and pray.
Monday, January 7, 2008
A Golden Anniversary and Hawaiian New Year
Sat 12/29/07 – Sat 01/05/08
Here are the Romberg family cruise highlights, celebrating Davd & Helen's 50th wedding anniversary. Susan did really well the entire time, thanks to God.
Saturday: Honolulu, Oahu – we boarded Norwegian Cruise Line's Pride of America after a smooth flight from LA.
Sunday: Hilo, Hawaii – visited Volcano National Park and 80' Rainbow Falls.
Monday: Kahului, Maui – strolled and shopped in Lahaina after seeing some humpback whales from a roadside turnout and saw some awesome hotel grounds in Kaanapali. Enjoyed New Year's Eve aboard the ship.
Tuesday: still on Maui – relaxed on board and watched USC whallop Illinois in the Rose Bowl. Wednesday: Kona, Hawaii – our group went snuba diving – like scuba, but on a 25' air line – among some beautiful coral reefs (Susan didn't dive). Then we drove down the Kona coast and saw how coffee, coconuts, papayas, and pineapples grow.
Thursday: Nawiliwili, Kauai – hiked to Kipu Falls for an island adventure, jumping the 25' falls into a deep pool (Sue didn't do the hike). Drove to Poipu and tried bodysurfing over gnarly lava rocks.
Friday: still on Kauai – had banana pancakes at the Tip Top Cafe in Lihui, went to Kalapaki Beach for sunning and swimming. The ship cruised along the Na Pali coast at sunset, where we saw dramatic skies, stunning rainbows, and groups of humpback whales.
Saturday: Honolulu, Oahu – disembarked and rented cars, visited the Punchbowl National Cemetery, the USS Arizona Memorial, and saw a beautiful sunset at Waikiki Beach.
Mahalo, David & Helen!
Sun 01/06/08
Returned from Hawaii after an unforgettable week, tired from our red-eye flight and thankful for great experiences, great family time, and no complications for Susan. We got home around 8am in rainy weather and slept awhile. Susan is tired, and will begin her five-day chemo tonight.
Sun 01/06/08
Whi'le w'e ha'd a fanta'stic ti'me i'n Hawai'i, o'ne thi'ng I wonde'red i's wh'y ther'e ar'e s'o ma'ny a'postro'phes i'n Hawai'ian wo'rds n'ow. I le'arned th'at sin'ce ema'il an'd t'ext mes'saging ha've becom'e p'opular, no' on'e u'ses a'postro'phes mu'ch a'nymore, le'aving a hug'e gl'ut o'f th'e unu'sed punct'u'ation mar'ks. Th'e reso'urceful Hawai'ian peo'ple bo'ught u'p th'e surpl'us an'd us'e th'em no'w o'n al'l s'orts o'f wo'rds tha't co'uld nev'er affo'rd the'm befo're. Thi's i's jus't anoth'er surpri'sing fac'et o'f th'is exoti'c la'nd. I picke'd u'p th'ese a'postro'phes a't a'n A'BC sto're i'n Hil'o an'd go't the'm pa'st th'e agricultu'ral inspe'ctors t'o us'e o'n th'is webs'ite.
And now some helpful Hawai'ian phrases:
Mah'alo nu'i l'oa humuhumunukunukuapua'a, which means "Thank you very much (to the Hawai'ian state fish)."
'Eono kala no ka ho'olohe lekio? 'O ia ho'i, 'ekolu wale no kala o kahi pepeiao! which means "Only six dollars for a headset? Why, that's only three dollars per ear!"
He kani 'ano 'e loa kela. Ua 'ai nui anei 'oe ma ke spam kakahiaka? which means "That was a most unusual sound. Did you eat a big spam breakfast?"
Here are the Romberg family cruise highlights, celebrating Davd & Helen's 50th wedding anniversary. Susan did really well the entire time, thanks to God.
Saturday: Honolulu, Oahu – we boarded Norwegian Cruise Line's Pride of America after a smooth flight from LA.
Sunday: Hilo, Hawaii – visited Volcano National Park and 80' Rainbow Falls.
Monday: Kahului, Maui – strolled and shopped in Lahaina after seeing some humpback whales from a roadside turnout and saw some awesome hotel grounds in Kaanapali. Enjoyed New Year's Eve aboard the ship.
Tuesday: still on Maui – relaxed on board and watched USC whallop Illinois in the Rose Bowl. Wednesday: Kona, Hawaii – our group went snuba diving – like scuba, but on a 25' air line – among some beautiful coral reefs (Susan didn't dive). Then we drove down the Kona coast and saw how coffee, coconuts, papayas, and pineapples grow.
Thursday: Nawiliwili, Kauai – hiked to Kipu Falls for an island adventure, jumping the 25' falls into a deep pool (Sue didn't do the hike). Drove to Poipu and tried bodysurfing over gnarly lava rocks.
Friday: still on Kauai – had banana pancakes at the Tip Top Cafe in Lihui, went to Kalapaki Beach for sunning and swimming. The ship cruised along the Na Pali coast at sunset, where we saw dramatic skies, stunning rainbows, and groups of humpback whales.
Saturday: Honolulu, Oahu – disembarked and rented cars, visited the Punchbowl National Cemetery, the USS Arizona Memorial, and saw a beautiful sunset at Waikiki Beach.
Mahalo, David & Helen!
Sun 01/06/08
Returned from Hawaii after an unforgettable week, tired from our red-eye flight and thankful for great experiences, great family time, and no complications for Susan. We got home around 8am in rainy weather and slept awhile. Susan is tired, and will begin her five-day chemo tonight.
Sun 01/06/08
Whi'le w'e ha'd a fanta'stic ti'me i'n Hawai'i, o'ne thi'ng I wonde'red i's wh'y ther'e ar'e s'o ma'ny a'postro'phes i'n Hawai'ian wo'rds n'ow. I le'arned th'at sin'ce ema'il an'd t'ext mes'saging ha've becom'e p'opular, no' on'e u'ses a'postro'phes mu'ch a'nymore, le'aving a hug'e gl'ut o'f th'e unu'sed punct'u'ation mar'ks. Th'e reso'urceful Hawai'ian peo'ple bo'ught u'p th'e surpl'us an'd us'e th'em no'w o'n al'l s'orts o'f wo'rds tha't co'uld nev'er affo'rd the'm befo're. Thi's i's jus't anoth'er surpri'sing fac'et o'f th'is exoti'c la'nd. I picke'd u'p th'ese a'postro'phes a't a'n A'BC sto're i'n Hil'o an'd go't the'm pa'st th'e agricultu'ral inspe'ctors t'o us'e o'n th'is webs'ite.
And now some helpful Hawai'ian phrases:
Mah'alo nu'i l'oa humuhumunukunukuapua'a, which means "Thank you very much (to the Hawai'ian state fish)."
'Eono kala no ka ho'olohe lekio? 'O ia ho'i, 'ekolu wale no kala o kahi pepeiao! which means "Only six dollars for a headset? Why, that's only three dollars per ear!"
He kani 'ano 'e loa kela. Ua 'ai nui anei 'oe ma ke spam kakahiaka? which means "That was a most unusual sound. Did you eat a big spam breakfast?"
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