it seems posts and pictures on social media as of late have possibly misled people and because my goal has been to be honest, perhaps to a fault, i'd like to clarify. if you aren't interested, feel free to stop reading - my feelings won't be hurt. talking or speculating, that's what hurts.
as i've shared, matt's cancer could show up again at any point, it's rare, it's aggressive and we won't be at rest for a very long time. years. there's a high re-occurence rate based on what they know and this kind in this location makes it the "worst of the worst."
God has done great things, we get up each morning praising Him for breath and strength and grace and a Home that He went to prepare for us. but because of what "they" say, our lives could change with any given scan or appointment. are things good today? yes, is it guaranteed for tomorrow? no. so we are living. we are taking every moment to experience life and be excited about each day, seizing opportunities to share Him and His goodness. are we too busy? maybe. but that's something we re-evaluate each day, weighing our exhaustion against our day full of memories.
and cancer is expensive. if you've walked this road, you know. if you haven't, let me tell you, tens of thousands. out of pocket. and we have good insurance. having said that, this isn't a plea for help or pity or anything even remotely close. it's simply to share that God has faithfully provided for every bill, co-pay, prescription and scan, and occasionally He provides before we even know what's to come. i'm in awe of His goodness and faithful provision. i'm convinced this was part of His plan all along. my faith lacks, i freak out, but He's teaching me. after thursday's marathon day of appointments which resulted in co-pay shock, we didn't what else to do so i smiled at matt, he smiled back and at the same time we said, you're worth it. and i'll share, because He's good like that, the kids haiti trips were fully funded less than a week after they were asked to pray about joining the team, their trip to NY was gifted to them so they could be kids again after the year they've had. my family made sure i had an amazing, memorable 40th birthday with my love.
and i share this to clear anything up and of course, if you are so inclined, we appreciate continued prayer for our family and join us in rejoicing over the little (and big) things.
Monday, July 28, 2014
Friday, July 25, 2014
cancerschmancer - surgeon and scans, the details
i finally logged in to write and realized i hadn't updated here since may. if you've been checking, i'm so sorry!! we've had so much happen but mostly good. or all good in the overall scheme of cancer.
yesterday we saw the surgeon for the first time in 8 weeks. we're supposed to see him every 4 weeks but because of the 4th of july holiday, our roadtrip the following weekend, and then a change in our insurance, we went longer than everyone was anticipating. and i was petrified - we haven't gone this long between appointments since before matt was diagnosed. the surgeon would scope the nose, brain lining etc. and if he found even the slightest sighting of a tumor, we'd go back in for surgery. he said there's no reason to biopsy, which is "standard," because nothing about this is "standard." with pins and needles we waited, wondering what the next weeks would hold.
my mind played ping pong with my thoughts.
would he find anything? take every thought captive.
are we going in for surgery and how extensive will it be this time? think on whatsoever things are true.
why does matt have headaches after swimming in the ocean? He is good.
why is he getting "phantom" smells? He is faithful.
how long will matt be healthy before we have to start over? He knows the end from the beginning.
why is matt so incredibly tired? we are fearfully and wonderfully made.
the Word has so many specific instructions and practical applications but my mind goes back and forth. i am a doer and need to know exactly what to do. i'm thankful we have that.
waking up early, we drove to uci and checked in. the ent residents saw us and talked in words they probably only recently learned in medical school. i didn't understand anything except they seemed proud that they could say them. i wasn't impressed, was tired of the anticipation and finally asked how many of these cases they'd seen? the two kids in white jackets stopped talking, quietly admitted this was the first time they'd seen it and then told us the surgeon would be right in.
thank you and buh-bye.
finally he walked in. i held my breath. he scoped and looked around, he was somber, a little serious. surgeons are hard to read. finally he said everything looks good and he'd most likely see any tumor regrowth before a scan saw it. whew. we told him we were head to get an mri and pet scan after his appointment. he asked that we get copies of those to him because his radiologist will read them as well as his tumor board. matt succeeded in making him laugh.
we asked about phantom smells. he said it could be the sensors trying to kick start. it could be the brain compensating for what's gone. hard to tell. he said give it more time. whatever matt has in 6 more months is most likely all he'll have.
he told us to see the neurosurgeon for a follow up, he wants that every 3 months. i'm not sure why. perhaps it's "standard"?
he also asked about matt's hearing. funny thing. all along matt has denied much hearing loss, though the rest of know there's a significant change and like everything else, we tease about it. but the other day it was very evident in the car that something went wrong when taylor asked me to send her a picture and matt replied with, "did we tape sesame street???" we all laughed. hard. and we knew he clearly didn't hear her. at the appointment matt told the surgeon his hearing was worse and dr. b ordered another hearing test with the specialist. matt said, what? i nodded my head. the surgeon shook his, we all laughed again.
we asked why matt got a massive headache after swimming in the ocean. the surgeon said because he has so much space now because not only was the tumor removed but so was a lot of other stuff. the flap and tissue that would normally keep water out is gone so when you have water go up the nose, with matt, it doesn't stop or go down to the mouth. it keeps going up and when the cold ocean water hits the brain lining, you experience a shock in temperature thus giving you a brain freeze. makes sense. he did caution us as there is so much bacteria in the water, but as long as matt continues to rinse, he should be ok. he also gave us another round of antibiotic rinse to help with irrigating. matt's tissue still has to learn to take care of itself and this will help in the mean time.
after this appointment we got to see our nurse, joe. matt invited him to the crusade and joe said he wouldn't miss it. matt has prayed for joe often and they've become close. i call this a cancer bonus. one of the amazing things that has happened as a direct result of the cancer. we would probably not meet otherwise.
from the surgeon's office, we headed back to riverside for the pet scan and mri. after 4 attempts, they got the iv in his hand. we're told veins take time to rebuild. scan results will come tuesday. but while matt was getting his scans, i went up to say hi to our friends in the oncology office and chemo room.
so many people have made an impact on us through the various appointments and treatments, but if i had to reflect back on everyone, it's our buddy, james who stands out the most. maybe you remember him, i wrote about him in previous entries. we met him a few times during chemo. he was old, he was frail. he had lived a full life. when we met him he had the advanced stages of cancer, it was pretty bad. he lived alone and a transport service brought him in his wheel chair to chemo. the last time i saw him he was bruised and bandaged from a fall, my heart broke. he'd sit as close to matt as his chemo chair would allow and listen intently as we read the bible, at times he'd shut his eyes, at the end he'd interject or ask questions. then he'd tell us stories. each time we saw him, matt would end their visit by holding his hand and praying for him. it's been a few months since we've seen james and it was yesterday that we found out james finished his race, he beat cancer. he's in heaven where there is no more sadness, no more pain, no more tears. i believe he heard well done. matt and i couldn't stop the tears. knowing perhaps, just maybe, we were able, through our own cancer journey, able to make a small impact on a man during his cancer battle. it truly makes it all worth it. i didn't see that before, i couldn't say it before. now, faced with the very realization that a man we prayed with is sitting a jesus' feet, is so...i don't know, i don't even have the words. i'm in awe.
2 cor 4:17 says "for our light and momentary troubles are achieving for us an eternal glory that outweighs them all." in the scheme or eternity, our lives - our cancer, is light and momentary. no matter what happens here, this is not the end. heaven is. eternity is. what we do in life, our successes, the earthly things we live for, none of it matters so much, people are the only thing we can take with us to heaven.
yesterday we saw the surgeon for the first time in 8 weeks. we're supposed to see him every 4 weeks but because of the 4th of july holiday, our roadtrip the following weekend, and then a change in our insurance, we went longer than everyone was anticipating. and i was petrified - we haven't gone this long between appointments since before matt was diagnosed. the surgeon would scope the nose, brain lining etc. and if he found even the slightest sighting of a tumor, we'd go back in for surgery. he said there's no reason to biopsy, which is "standard," because nothing about this is "standard." with pins and needles we waited, wondering what the next weeks would hold.
my mind played ping pong with my thoughts.
would he find anything? take every thought captive.
are we going in for surgery and how extensive will it be this time? think on whatsoever things are true.
why does matt have headaches after swimming in the ocean? He is good.
why is he getting "phantom" smells? He is faithful.
how long will matt be healthy before we have to start over? He knows the end from the beginning.
why is matt so incredibly tired? we are fearfully and wonderfully made.
the Word has so many specific instructions and practical applications but my mind goes back and forth. i am a doer and need to know exactly what to do. i'm thankful we have that.
waking up early, we drove to uci and checked in. the ent residents saw us and talked in words they probably only recently learned in medical school. i didn't understand anything except they seemed proud that they could say them. i wasn't impressed, was tired of the anticipation and finally asked how many of these cases they'd seen? the two kids in white jackets stopped talking, quietly admitted this was the first time they'd seen it and then told us the surgeon would be right in.
thank you and buh-bye.
finally he walked in. i held my breath. he scoped and looked around, he was somber, a little serious. surgeons are hard to read. finally he said everything looks good and he'd most likely see any tumor regrowth before a scan saw it. whew. we told him we were head to get an mri and pet scan after his appointment. he asked that we get copies of those to him because his radiologist will read them as well as his tumor board. matt succeeded in making him laugh.
we asked about phantom smells. he said it could be the sensors trying to kick start. it could be the brain compensating for what's gone. hard to tell. he said give it more time. whatever matt has in 6 more months is most likely all he'll have.
he told us to see the neurosurgeon for a follow up, he wants that every 3 months. i'm not sure why. perhaps it's "standard"?
he also asked about matt's hearing. funny thing. all along matt has denied much hearing loss, though the rest of know there's a significant change and like everything else, we tease about it. but the other day it was very evident in the car that something went wrong when taylor asked me to send her a picture and matt replied with, "did we tape sesame street???" we all laughed. hard. and we knew he clearly didn't hear her. at the appointment matt told the surgeon his hearing was worse and dr. b ordered another hearing test with the specialist. matt said, what? i nodded my head. the surgeon shook his, we all laughed again.
we asked why matt got a massive headache after swimming in the ocean. the surgeon said because he has so much space now because not only was the tumor removed but so was a lot of other stuff. the flap and tissue that would normally keep water out is gone so when you have water go up the nose, with matt, it doesn't stop or go down to the mouth. it keeps going up and when the cold ocean water hits the brain lining, you experience a shock in temperature thus giving you a brain freeze. makes sense. he did caution us as there is so much bacteria in the water, but as long as matt continues to rinse, he should be ok. he also gave us another round of antibiotic rinse to help with irrigating. matt's tissue still has to learn to take care of itself and this will help in the mean time.
after this appointment we got to see our nurse, joe. matt invited him to the crusade and joe said he wouldn't miss it. matt has prayed for joe often and they've become close. i call this a cancer bonus. one of the amazing things that has happened as a direct result of the cancer. we would probably not meet otherwise.
from the surgeon's office, we headed back to riverside for the pet scan and mri. after 4 attempts, they got the iv in his hand. we're told veins take time to rebuild. scan results will come tuesday. but while matt was getting his scans, i went up to say hi to our friends in the oncology office and chemo room.
so many people have made an impact on us through the various appointments and treatments, but if i had to reflect back on everyone, it's our buddy, james who stands out the most. maybe you remember him, i wrote about him in previous entries. we met him a few times during chemo. he was old, he was frail. he had lived a full life. when we met him he had the advanced stages of cancer, it was pretty bad. he lived alone and a transport service brought him in his wheel chair to chemo. the last time i saw him he was bruised and bandaged from a fall, my heart broke. he'd sit as close to matt as his chemo chair would allow and listen intently as we read the bible, at times he'd shut his eyes, at the end he'd interject or ask questions. then he'd tell us stories. each time we saw him, matt would end their visit by holding his hand and praying for him. it's been a few months since we've seen james and it was yesterday that we found out james finished his race, he beat cancer. he's in heaven where there is no more sadness, no more pain, no more tears. i believe he heard well done. matt and i couldn't stop the tears. knowing perhaps, just maybe, we were able, through our own cancer journey, able to make a small impact on a man during his cancer battle. it truly makes it all worth it. i didn't see that before, i couldn't say it before. now, faced with the very realization that a man we prayed with is sitting a jesus' feet, is so...i don't know, i don't even have the words. i'm in awe.
2 cor 4:17 says "for our light and momentary troubles are achieving for us an eternal glory that outweighs them all." in the scheme or eternity, our lives - our cancer, is light and momentary. no matter what happens here, this is not the end. heaven is. eternity is. what we do in life, our successes, the earthly things we live for, none of it matters so much, people are the only thing we can take with us to heaven.
cancerschmancer - the book
on another note, i've been asked to write. i'll be honest, i'm so scared.
people are mean, critics are mean. i'm not sure i can handle that on top of everything else.
but after some prodding, it is something i'm praying about. matt said he wants me to write a book so he can retire. ha! well, we'd have to charge a lot per book since we'll only need to print about 100 copies but that's another story.
but last night i heard a speaker at church, catherine martin. she shared a story in matthew 14.
it was the 4th watch in the night. it was the darkest hour. it was stormy. they cried out in fear.
oh how i relate.
Jesus told them, be of good cheer, it is I. do not be afraid.
He called peter out of the boat and on to the water, "come" He said. and peter took a step toward Jesus but then looked again at the storm and he started to go down. Jesus stretched out his hand and caught him, asking, "why do you doubt, you have little faith."
i am afraid. i see the storm. but He wants us to get out of the boat. step out in faith.
if you think of it, please pray. i'm not sure where to start. i'm praying the Lord will open doors, He'll provide people to guide me. perhaps even to write with me. He knows. please pray most of all that He would be glorified.
people are mean, critics are mean. i'm not sure i can handle that on top of everything else.
but after some prodding, it is something i'm praying about. matt said he wants me to write a book so he can retire. ha! well, we'd have to charge a lot per book since we'll only need to print about 100 copies but that's another story.
but last night i heard a speaker at church, catherine martin. she shared a story in matthew 14.
it was the 4th watch in the night. it was the darkest hour. it was stormy. they cried out in fear.
oh how i relate.
Jesus told them, be of good cheer, it is I. do not be afraid.
He called peter out of the boat and on to the water, "come" He said. and peter took a step toward Jesus but then looked again at the storm and he started to go down. Jesus stretched out his hand and caught him, asking, "why do you doubt, you have little faith."
i am afraid. i see the storm. but He wants us to get out of the boat. step out in faith.
if you think of it, please pray. i'm not sure where to start. i'm praying the Lord will open doors, He'll provide people to guide me. perhaps even to write with me. He knows. please pray most of all that He would be glorified.
Subscribe to:
Posts (Atom)