everyone has been waiting. checking in. texting. calling. emailing.
we're thankful to have such an army praying. as we were told again, this is a rare and aggressive cancer that needs to be hit hard. (will they ever quit reminding me of this?)
so this morning we got a call from the oncologist. the mri results were in and she had a minute to look them over.
here's what she said…
there is no longer a tumor - which we knew because they removed it in surgery.
and there's a ton of inflammation because the surgery was so extensive. it takes 3-6 months to fully heal from something this major. while they can't see any cancer cells, they can't rule anything out.
so do they know for certain there are any cancer cells? no.
do they know for certain there aren't any? no.
he has a lot of pain in his eye because of the inflammation from surgery. it's normal. it will take a long time to heal. a long time. and this is...normal.
in the mean time it was agreed upon by all parties involved matt needs to have the full max amount of chemo. matt wasn't included in "all parties involved" because he'd rather be done. it makes him so sick. and so tired. and so utterly miserable.
next chemo is monday, tuesday, wednesday. we see the surgeon on tuesday of next week as well. he'll look over the mri and i'm sure he'll have an opinion on it as well.
for now, we continue to wait.
as i've said, waiting is hard.
this morning a friend shared this blog post with me, to live in the not knowing. i felt like it described me to a T. we live in a painful limbo she says, a long stretch between what was and what will be. if you are in it, you understand, if you aren't, you will be.
for us our "cancer" is cancer.
for you, your "cancer" could be another life altering situation. we all have a type of cancer.
we all have those things in our lives that burden our hearts. make us stop dead in our tracks. they cause our legs to go weak. our nights to be sleepless. our lives are planned around them whether we want them to be or not.
i'm by nature not much of an anxious person, but cancer has changed it. it has hijacked my heart. there have a been a few times that i'm gripped by worry. there's fear and trembling. i'm literally paralyzed. my heart feels like it's going to pound of my ever tightened chest, it's hard to get air.
it's happened twice actually. both times were when i was alone. and my thoughts begin to wonder. they go to the what if. i start picturing things to be different.
the other day, my love was out with a friend. it was a routine saturday, i changed the sheets on the bed and stopped, i couldn't move, my hands and my feet froze. tears streamed down my face as my mind went there. i left the sheets as they were and called him. i just needed to hear his voice and be reminded he's ok. i spent some time in prayer. i listened to worship and dug into the Word, i got my hope pile out and physically held it. i read those cards over and over.
i went back and forth whether or not to be so personal, but i wanted to share this because those feelings are very real no matter what our "cancer" is. i've learned and am learning that we can feed the fears, worries, thoughts. we can sit and ponder those situations. we can let our dark despair go deeper. or we can remember His promises. worship with abandonment, cling to Him, recite the Word of God, it's true and it brings life and hope. we've been taught we can't stop a bird from landing on our heads but we can stop it from building a nest. by the same token, we can't stop the thoughts from coming but we can stop ourselves from feeding them. i want to feed my mind with the Word of God. because then no matter what happens, i am reminded of His goodness, His faithfulness. i'm reminded that life here on earth is temporary. we are here for a greater purpose - to know Him and make Him known.
so because we could be waiting for a very long time, we're choosing to live. another quote from the blog i referenced above says this:
for me, i've decided this: i will not put my joy on hold. i will not wait for the phone to ring before i decide to laugh and dance. it's a cost i'm not willing to pay. instead, i choose to live.
so off the top off my head:
today i'm signing up for my first triathlon.
i'm dusting off the running shoes that have sat untouched since matt's diagnosis.
we're looking into camping places for the summer.
we're exploring the idea of the kids going back to Haiti.
i'm cooking again. (Lord help us!)
we're laughing.
dancing.
singing.
we're looking for opportunities to glorify Him.
are hard days coming? absolutely.
do we know how we'll get through them? only by God's grace.
is there any doubt that we. will. get. through. them? not a chance.
but i don't want cancer to rob us of our joy. whether we have today or a thousand tomorrows, i want to live. and live joyfully.
"for our present troubles are small and won't last very long. yet they produce for us a glory that vastly outweighs them and will last forever!" 2 cor. 4:17
Monday, February 24, 2014
Wednesday, February 19, 2014
cancerschmancer - the surgery day
i was going to write about a few things going on but none of them would make sense without knowing what happened the day of surgery, so here goes…
the night before surgery, a few friends came over and we spent time in prayer over matt and worshipping together. i have to say, it was one of THE BEST times we've had in the past 6 months.
worshipping is one of my favorite things ever and to sit next to matt and the kids, it doesn't get any better. no surprise, i shed a tear or two. taylor prayed for her daddy and it was very sweet. i love hearing her pray things like Your will Lord, we trust You with my daddy, be glorified in this, we know You have a purpose and we trust it, whether you choose to heal him here on earth or in Heaven, we know it's perfect and we love you. ahhh, moments like that make a mom's heart full. when she cried, i bawled, as did just about everyone else. her tender heart was breaking as it was growing.
fast forward - we didn't get much sleep. we were up at 2:45am and on the road by 4am. check in for the hospital was 5am and we got there a few minutes early. we were first in line for valet (see there are benefits to an early surgery time!) we had a few minutes to listen to kwve and pray. finally we snapped a picture and headed up to the second floor to check in.
at about 5:10, they took matt back and gave me a pager. they said when it goes off, come see us, we'll have news to tell you. and then they said once matt is settled, they'd call me back to see him before surgery. i sat in the waiting room. alone. with my Bible in my lap, i tried to read. my mind was all over the place. i couldn't focus at all on the words on the page. soon the pages became blurry as my eyes welled up. this wasn't supposed to happen. why were we sitting at uci at 5:15am waiting for surgery to begin? cancer? did matt really have it? how did we get to this place when he's always been so healthy? what would the results say? would they get it all? about an hour later friends and family started showing to be with me.
they let me go back to see matt at about 6:30. surgery was slated to begin at 7am. when i walked into his pre-op room, i immediately cried, then he did too. he was laying in his hospital bed with a gown. he said they couldn't get the iv in. a doctor came in and on the sixth or seventh attempt, they got a vein. they said they'd get a second iv in, one used for back up during surgery, when matt was fast asleep. they gave us a few minutes while they checked this and that, and matt and i got to pray one more time.
then they took him back. i went back out to the waiting room with my pager. and i waited. and waited.
finally at about 10 or 11am they paged me. i jumped up, yelled bingo! and ran to the counter. (i thought i only did that in my head, but a dear friend said later, no, no, you said it out loud sarah sue.) at the counter they said he's still in surgery and everything is good. ummm ok and...? she said ok? i said that's it? yes, she said, that's it. so i went back to the group with a spring in my step. all was well.
now mind you, we knew our purpose at the hospital was to be a light. keeping this in mind, we went downstairs to grab a bite. and as we were done, i saw an older, distinguished looking man in a white doctor coat eating his lunch. he minding his own business - perhaps i should have followed that example - but no. he had a stack of files at his table and he looked important. i decided to thank him, be that light at uci. because i'm sure his job, whatever it was, was thankless. (why i thought that, i have no idea!!)
funny how many details of that day are hazy, but i remember what i said to him word for word, and every time i think of it, i cringe, surely you've had those moments that you relive over and over?
so i walked up to him and said this: i don't know what you do around here but based on your jacket and that stack of files, it's probably important. so thank you. my husband is upstairs in surgery and i'm sure you had a part in that. (what?!!!) the look on his face showed one of confusion. so i again thanked him and walked away. when i turned around my mom was dying, she literally had tears running down her face. now that i think about it, it was the most ridiculous decisions i made during our time at uci. i decided it was no big deal, i wouldn't see him again. then i realized that isn't true, we'd be there for a week. ugh. so i decided from then on, i'd shy way from thanking anyone who might look important based on their jacket and files. i guess the lack of sleep from the night before was starting to get to me.
fast forward a few hours. we hadn't heard anything new. some family and friends came, others left. and sometime about 3pm, the pager went off again.
my heart raced, i jumped up and ran to the desk. a surgeon i had not met was standing there. he held his hand out and said, mrs. jarrett, i'm dr. hsu, i am one of the surgeons working with dr. b. why don't you join me in a private room so we can talk. is there anyone you want with you? i said no, and somehow i made it to a chair in that small room. he looked at me and said, oh it's not bad, don't worry. i was trembling, shaking and had to concentrate to even breathe. i wished i had kleenex. instead like a kid, i used my sleeve. yes i did. i'm not positive of his exact words but he told me matt was still in surgery and it was going well. there was a lot of live tumor in there, more than they expected. they took a lot of samples. and one sample in particular was concerning, it was from the right optic nerve wall and pathology said it was positive. his cancer was further than we hoped. it had feelers. they couldn't go any further in surgery. he said we can always do more radiation and chemotherapy. or we can choose to take the eye. i said take it. he smiled and shook his head, he said that was a decision i'd have to make with matt. (later when i told matt about this, he reminded me that we never even discussed that. i told him i didn't care, if it meant saving matt, he could lose the eye.) the surgeon said we have time, that surgery couldn't be done through the nose, it was a more extensive surgery, cutting his head. it would be for another day. i told the dr. we couldn't do anymore radiation, we've gone to the max dose for that area. he replied with, that's why we'd have done surgery first, treatment second. but he said, matt and i would need to discuss quality vs. quantity of life. this was a serious, rare and aggressive cancer. there are decisions to be made. he said, i'm very sorry.
i left the room starting to second guess our decision of treatment first and was reminded by what i had just read about Lot's wife in the one year bible. she looked back. no, i wasn't going there. we made a decision based on the information we had way back then and now we were looking ahead.
i walked out numb. the one person i needed to talk to wasn't available. he was in surgery. my best friend wasn't there.
when i made it back to our area, i collapsed on the floor at the feet of my friends and family. i told them what dr. hsu said, somehow with all of the tears and sobbing, they understood me and they prayed. i needed a few minutes, i needed air, i needed space, i needed time to digest it before i could call the kids.
i took my bible, my phone and my pager and i went into the bathroom. i stood up against the counter and i cried. i sobbed. the counter held me up. i asked the Lord why matt. why?! it was the first time i questioned, if you will, His plan in this. i wasn't ok with this. i've trusted Him, i've relied on Him, but the God who can do anything wasn't choosing healing. i didn't understand. my kids' faith had grown and i didn't want to shatter that because His will wasn't our will. that realization was starting to hit. i turned on pandora and worshipped with chris tomlin.
i opened to the psalms and remembered that we were taught in case of emergency, 911. i couldn't remember if it was psalm 9:11 or psalm 91:1. but i turned to chapter 91. it brought such incredible comfort. it was very real. i read about how we live under His shadow, He'll deliver you, He'll cover you, He is our fortress, in Him will i trust. He protects us, under His wings we take refuge, we don't have to be afraid. the chapter closes with He shall call upon Me and I will answer him; I will be with him in trouble; I will deliver him and honor him. with long life I will satisfy him and show him My salvation. there's a lot of great stuff in that psalm.
i'm not sure how long i was in that bathroom. but after a while, i went back out and had to call the kids.
i got them on the phone and took them through that psalm. i tried not to cry. while i was talking to them, my friends and family at the hospital prayed over me. for comfort, for wisdom, for the right words, for the kids' hearts. i told the kids the truth as we have all along. but i told them we were going to trust Him in this because He is faithful. He loves us. He won't leave us. we will remember all of the amazing things God has done so far. we prayed, i told them i loved them. and then i hung up and fell apart again. that was the second hardest thing i've ever done. the first of course, was telling them their daddy had cancer.
more family came in, we had now taken over a good section of the waiting room. jamie got there. and then the pager went off again. it was now about 5pm. i drug myself to the counter, no longer running or walking with a spring in my step, the word bingo didn't enter my mind. it was a very slow pathetic walk. there were no doctors this time, just the lady at the desk. she asked me to go into a bigger private room to meet with both surgeons, dr. b and dr. hsu. jamie, armed with her notebook and me, armed with a wad of kleenex, made our way to that room and waited. the two surgeons met us there and had exhausted smiles. they said matt was out. he was being wheeled to recovery. it went well they said. they explained that the results before may have been too premature. the cells still have active radiation and they are easily confused with cancer cells. to be honest, they really aren't sure if the particular optic nerve wall biopsy was cancer or not. they called in another big wig (my words, not theirs) surgeon and a more experienced pathologist and neither could say for sure. so they sent the samples on for more pathology testing. we'd have to wait about 5-10 days to know for sure. (we've since found out that those two in question came back negative!) in the mean time, i could see my beloved in an hour. they went on to explain how there was a lot more live cancer in the area than they expected, they took samples and samples until they got negative results. 29 samples in all. there were places they couldn't go deep because it was the optic nerve wall and the brain lining and once you've hit those, you can only go so far. but they did the best they could. they said it was a very long surgery, longer than than anticipated, one of the longest they'd done. dr. b never left the room, he was tired.
we thanked them and walked out. we let the rest of the family know that we were once again in limbo, but maybe it wasn't as bad as we once thought. calls were made, texts were sent and more tears were shed. i had to once again call the kids and let them know the update. it was then that they both cried. then i cried. the uncertainty is hard. finally at 6:15, i got to see my love in icu. he was pale, his eyes weren't open, he had just thrown up, but he was there. it was all i could do not to jump into that bed next to him and listen to his heart beat. i held his hand and he squeezed mine. it was a moment i'll never forget.
and thus began our 5 nights at uci.
the night before surgery, a few friends came over and we spent time in prayer over matt and worshipping together. i have to say, it was one of THE BEST times we've had in the past 6 months.
worshipping is one of my favorite things ever and to sit next to matt and the kids, it doesn't get any better. no surprise, i shed a tear or two. taylor prayed for her daddy and it was very sweet. i love hearing her pray things like Your will Lord, we trust You with my daddy, be glorified in this, we know You have a purpose and we trust it, whether you choose to heal him here on earth or in Heaven, we know it's perfect and we love you. ahhh, moments like that make a mom's heart full. when she cried, i bawled, as did just about everyone else. her tender heart was breaking as it was growing.
fast forward - we didn't get much sleep. we were up at 2:45am and on the road by 4am. check in for the hospital was 5am and we got there a few minutes early. we were first in line for valet (see there are benefits to an early surgery time!) we had a few minutes to listen to kwve and pray. finally we snapped a picture and headed up to the second floor to check in.
at about 5:10, they took matt back and gave me a pager. they said when it goes off, come see us, we'll have news to tell you. and then they said once matt is settled, they'd call me back to see him before surgery. i sat in the waiting room. alone. with my Bible in my lap, i tried to read. my mind was all over the place. i couldn't focus at all on the words on the page. soon the pages became blurry as my eyes welled up. this wasn't supposed to happen. why were we sitting at uci at 5:15am waiting for surgery to begin? cancer? did matt really have it? how did we get to this place when he's always been so healthy? what would the results say? would they get it all? about an hour later friends and family started showing to be with me.
they let me go back to see matt at about 6:30. surgery was slated to begin at 7am. when i walked into his pre-op room, i immediately cried, then he did too. he was laying in his hospital bed with a gown. he said they couldn't get the iv in. a doctor came in and on the sixth or seventh attempt, they got a vein. they said they'd get a second iv in, one used for back up during surgery, when matt was fast asleep. they gave us a few minutes while they checked this and that, and matt and i got to pray one more time.
then they took him back. i went back out to the waiting room with my pager. and i waited. and waited.
finally at about 10 or 11am they paged me. i jumped up, yelled bingo! and ran to the counter. (i thought i only did that in my head, but a dear friend said later, no, no, you said it out loud sarah sue.) at the counter they said he's still in surgery and everything is good. ummm ok and...? she said ok? i said that's it? yes, she said, that's it. so i went back to the group with a spring in my step. all was well.
now mind you, we knew our purpose at the hospital was to be a light. keeping this in mind, we went downstairs to grab a bite. and as we were done, i saw an older, distinguished looking man in a white doctor coat eating his lunch. he minding his own business - perhaps i should have followed that example - but no. he had a stack of files at his table and he looked important. i decided to thank him, be that light at uci. because i'm sure his job, whatever it was, was thankless. (why i thought that, i have no idea!!)
funny how many details of that day are hazy, but i remember what i said to him word for word, and every time i think of it, i cringe, surely you've had those moments that you relive over and over?
so i walked up to him and said this: i don't know what you do around here but based on your jacket and that stack of files, it's probably important. so thank you. my husband is upstairs in surgery and i'm sure you had a part in that. (what?!!!) the look on his face showed one of confusion. so i again thanked him and walked away. when i turned around my mom was dying, she literally had tears running down her face. now that i think about it, it was the most ridiculous decisions i made during our time at uci. i decided it was no big deal, i wouldn't see him again. then i realized that isn't true, we'd be there for a week. ugh. so i decided from then on, i'd shy way from thanking anyone who might look important based on their jacket and files. i guess the lack of sleep from the night before was starting to get to me.
fast forward a few hours. we hadn't heard anything new. some family and friends came, others left. and sometime about 3pm, the pager went off again.
my heart raced, i jumped up and ran to the desk. a surgeon i had not met was standing there. he held his hand out and said, mrs. jarrett, i'm dr. hsu, i am one of the surgeons working with dr. b. why don't you join me in a private room so we can talk. is there anyone you want with you? i said no, and somehow i made it to a chair in that small room. he looked at me and said, oh it's not bad, don't worry. i was trembling, shaking and had to concentrate to even breathe. i wished i had kleenex. instead like a kid, i used my sleeve. yes i did. i'm not positive of his exact words but he told me matt was still in surgery and it was going well. there was a lot of live tumor in there, more than they expected. they took a lot of samples. and one sample in particular was concerning, it was from the right optic nerve wall and pathology said it was positive. his cancer was further than we hoped. it had feelers. they couldn't go any further in surgery. he said we can always do more radiation and chemotherapy. or we can choose to take the eye. i said take it. he smiled and shook his head, he said that was a decision i'd have to make with matt. (later when i told matt about this, he reminded me that we never even discussed that. i told him i didn't care, if it meant saving matt, he could lose the eye.) the surgeon said we have time, that surgery couldn't be done through the nose, it was a more extensive surgery, cutting his head. it would be for another day. i told the dr. we couldn't do anymore radiation, we've gone to the max dose for that area. he replied with, that's why we'd have done surgery first, treatment second. but he said, matt and i would need to discuss quality vs. quantity of life. this was a serious, rare and aggressive cancer. there are decisions to be made. he said, i'm very sorry.
i left the room starting to second guess our decision of treatment first and was reminded by what i had just read about Lot's wife in the one year bible. she looked back. no, i wasn't going there. we made a decision based on the information we had way back then and now we were looking ahead.
i walked out numb. the one person i needed to talk to wasn't available. he was in surgery. my best friend wasn't there.
when i made it back to our area, i collapsed on the floor at the feet of my friends and family. i told them what dr. hsu said, somehow with all of the tears and sobbing, they understood me and they prayed. i needed a few minutes, i needed air, i needed space, i needed time to digest it before i could call the kids.
i took my bible, my phone and my pager and i went into the bathroom. i stood up against the counter and i cried. i sobbed. the counter held me up. i asked the Lord why matt. why?! it was the first time i questioned, if you will, His plan in this. i wasn't ok with this. i've trusted Him, i've relied on Him, but the God who can do anything wasn't choosing healing. i didn't understand. my kids' faith had grown and i didn't want to shatter that because His will wasn't our will. that realization was starting to hit. i turned on pandora and worshipped with chris tomlin.
i opened to the psalms and remembered that we were taught in case of emergency, 911. i couldn't remember if it was psalm 9:11 or psalm 91:1. but i turned to chapter 91. it brought such incredible comfort. it was very real. i read about how we live under His shadow, He'll deliver you, He'll cover you, He is our fortress, in Him will i trust. He protects us, under His wings we take refuge, we don't have to be afraid. the chapter closes with He shall call upon Me and I will answer him; I will be with him in trouble; I will deliver him and honor him. with long life I will satisfy him and show him My salvation. there's a lot of great stuff in that psalm.
i'm not sure how long i was in that bathroom. but after a while, i went back out and had to call the kids.
i got them on the phone and took them through that psalm. i tried not to cry. while i was talking to them, my friends and family at the hospital prayed over me. for comfort, for wisdom, for the right words, for the kids' hearts. i told the kids the truth as we have all along. but i told them we were going to trust Him in this because He is faithful. He loves us. He won't leave us. we will remember all of the amazing things God has done so far. we prayed, i told them i loved them. and then i hung up and fell apart again. that was the second hardest thing i've ever done. the first of course, was telling them their daddy had cancer.
more family came in, we had now taken over a good section of the waiting room. jamie got there. and then the pager went off again. it was now about 5pm. i drug myself to the counter, no longer running or walking with a spring in my step, the word bingo didn't enter my mind. it was a very slow pathetic walk. there were no doctors this time, just the lady at the desk. she asked me to go into a bigger private room to meet with both surgeons, dr. b and dr. hsu. jamie, armed with her notebook and me, armed with a wad of kleenex, made our way to that room and waited. the two surgeons met us there and had exhausted smiles. they said matt was out. he was being wheeled to recovery. it went well they said. they explained that the results before may have been too premature. the cells still have active radiation and they are easily confused with cancer cells. to be honest, they really aren't sure if the particular optic nerve wall biopsy was cancer or not. they called in another big wig (my words, not theirs) surgeon and a more experienced pathologist and neither could say for sure. so they sent the samples on for more pathology testing. we'd have to wait about 5-10 days to know for sure. (we've since found out that those two in question came back negative!) in the mean time, i could see my beloved in an hour. they went on to explain how there was a lot more live cancer in the area than they expected, they took samples and samples until they got negative results. 29 samples in all. there were places they couldn't go deep because it was the optic nerve wall and the brain lining and once you've hit those, you can only go so far. but they did the best they could. they said it was a very long surgery, longer than than anticipated, one of the longest they'd done. dr. b never left the room, he was tired.
we thanked them and walked out. we let the rest of the family know that we were once again in limbo, but maybe it wasn't as bad as we once thought. calls were made, texts were sent and more tears were shed. i had to once again call the kids and let them know the update. it was then that they both cried. then i cried. the uncertainty is hard. finally at 6:15, i got to see my love in icu. he was pale, his eyes weren't open, he had just thrown up, but he was there. it was all i could do not to jump into that bed next to him and listen to his heart beat. i held his hand and he squeezed mine. it was a moment i'll never forget.
and thus began our 5 nights at uci.
Tuesday, February 18, 2014
cancerschmancer - latest update
last week matt finished his first round of chemo. first round post surgery. fifth round since the diagnosis.
it knocked him.
badly.
monday and tuesday he was ok after chemo. but after wednesday's treatment - there was a significant change. he wasn't in pain, he wasn't nauseaus, aside from saying he was tired and really miserable, he couldn't describe it. a few days later he finally said it felt like the chemo was killing him and it felt like he had battery acid flowing through his veins, he didn't feel good from head to toe.
that knocked me.
he says he doesn't know how he'll do the next two rounds. i don't know either. but if you asked me almost 6 months ago how we'd walk this cancer road, i couldn't tell you then.
today, i say we can face tomorrow armed with His grace, mercy and strength; we're clinging to Him with desperate dependence. and that's how we'll face the next chemo round. aside from that, i really don't know either. i just know we will.
i have a nasty cold so we're trying to distance ourselves from each other. mine has to run it's course and i'm on day 6. if you think about it, please pray for matt...his immune system is really shot right now and the last thing he needs to be fighting is a stupid cold. clorox is our friend. everything is getting wiped down. often.
this is how we spent valentines day - we're oh so romantic. i wish we were kidding. sigh...
going into this week was freeing. though i still don't feel well, matt is starting to feel good again.
he has neuropathy, the ringing in his ears is bad, he can't smell much, can't taste much (so when i oversalt something, no one cares!) and this chemo is causing his hair to fall out - all of his hair. soon he won't have eyebrows but the good news is we'll be able to draw his eyebrows on depending on his mood. we're looking forward to that. stay tuned for pictures.
and his legs will resemble those of an athlete - we'll find the positives and humor in all of it.
so this week is the first week in months that we didn't have any doctor appointments. it feels like forever since we've gone a week without having something lined up.
and then they called.
matt is scheduled for an mri this thursday. they want it "asap." i asked what exactly "asap" means in the medical world. i know stat means within hours and the results are given within hours. i know this because every other test he's had was ordered "stat." asap means exactly that, as soon as possible. in matt's case, it was scheduled to take place within 48 hours. not bad. i hope the results come in just as quickly. the waiting kills me. literally causes anxiety because i know the information is there. i just don't know what the information is. the waiting is just. so. hard.
this will be the first "true" mri since surgery. he had one as they were finishing up the surgery but at that point the radiation was still active and they couldn't get a real accurate reading on what was going on - though they said it was good.
radiation is now completely out of his system and he's 5 weeks post-op so this one will tell us a lot. in fact, this mri determines our future. fortunately He already knows our future. He walks before us. He knew this before time began. and in that we can rest.
so where do we stand now...
if the mri is clear and no cancer is detected, matt will have chemo again march 3-5 and again march 24-26 and then we're done. at least done with treatment. but matt will have scans often for the next few years.
if the mri isn't clear, i assume they'll do a pet scan to check the rest of his body and then matt will have either chemo or more surgery. our oncologist continues to consult with the city of hope doctors because remember, this is rare and aggressive. i'm reminded of proverbs 15:22, "without counsel, plans go awry, but in the multitude of counselors they are established." so though we don't understand their discussions or conversations, we trust they know what they are doing when they all agree on a plan.
this morning in the one year bible we read psalm 37:1-11 and there was some great practical instruction for me. i love how timely this is.
don't fret
trust in the Lord
do good
feed on His faithfulness
delight in Him
commit your way to Him
trust in Him
rest in the Lord
wait patiently for Him
don't fret (did you notice that's there twice!!)
cease from anger
don't fret (oh look, three times!)
the meek shall inherit the earth and they shall delight themselves in the abundance of peace
so with that, we rest in Him, in His perfect plan for us and continue to look for opportunities to glorify Him in this. we thank you for praying and walking this road with us.
one of these days, i'll let myself get back to the surgery day and share about that. frankly though, my emotions aren't ready to go there.
it knocked him.
badly.
monday and tuesday he was ok after chemo. but after wednesday's treatment - there was a significant change. he wasn't in pain, he wasn't nauseaus, aside from saying he was tired and really miserable, he couldn't describe it. a few days later he finally said it felt like the chemo was killing him and it felt like he had battery acid flowing through his veins, he didn't feel good from head to toe.
that knocked me.
he says he doesn't know how he'll do the next two rounds. i don't know either. but if you asked me almost 6 months ago how we'd walk this cancer road, i couldn't tell you then.
today, i say we can face tomorrow armed with His grace, mercy and strength; we're clinging to Him with desperate dependence. and that's how we'll face the next chemo round. aside from that, i really don't know either. i just know we will.
i have a nasty cold so we're trying to distance ourselves from each other. mine has to run it's course and i'm on day 6. if you think about it, please pray for matt...his immune system is really shot right now and the last thing he needs to be fighting is a stupid cold. clorox is our friend. everything is getting wiped down. often.
this is how we spent valentines day - we're oh so romantic. i wish we were kidding. sigh...
going into this week was freeing. though i still don't feel well, matt is starting to feel good again.
he has neuropathy, the ringing in his ears is bad, he can't smell much, can't taste much (so when i oversalt something, no one cares!) and this chemo is causing his hair to fall out - all of his hair. soon he won't have eyebrows but the good news is we'll be able to draw his eyebrows on depending on his mood. we're looking forward to that. stay tuned for pictures.
and his legs will resemble those of an athlete - we'll find the positives and humor in all of it.
so this week is the first week in months that we didn't have any doctor appointments. it feels like forever since we've gone a week without having something lined up.
and then they called.
matt is scheduled for an mri this thursday. they want it "asap." i asked what exactly "asap" means in the medical world. i know stat means within hours and the results are given within hours. i know this because every other test he's had was ordered "stat." asap means exactly that, as soon as possible. in matt's case, it was scheduled to take place within 48 hours. not bad. i hope the results come in just as quickly. the waiting kills me. literally causes anxiety because i know the information is there. i just don't know what the information is. the waiting is just. so. hard.
this will be the first "true" mri since surgery. he had one as they were finishing up the surgery but at that point the radiation was still active and they couldn't get a real accurate reading on what was going on - though they said it was good.
radiation is now completely out of his system and he's 5 weeks post-op so this one will tell us a lot. in fact, this mri determines our future. fortunately He already knows our future. He walks before us. He knew this before time began. and in that we can rest.
so where do we stand now...
if the mri is clear and no cancer is detected, matt will have chemo again march 3-5 and again march 24-26 and then we're done. at least done with treatment. but matt will have scans often for the next few years.
if the mri isn't clear, i assume they'll do a pet scan to check the rest of his body and then matt will have either chemo or more surgery. our oncologist continues to consult with the city of hope doctors because remember, this is rare and aggressive. i'm reminded of proverbs 15:22, "without counsel, plans go awry, but in the multitude of counselors they are established." so though we don't understand their discussions or conversations, we trust they know what they are doing when they all agree on a plan.
this morning in the one year bible we read psalm 37:1-11 and there was some great practical instruction for me. i love how timely this is.
don't fret
trust in the Lord
do good
feed on His faithfulness
delight in Him
commit your way to Him
trust in Him
rest in the Lord
wait patiently for Him
don't fret (did you notice that's there twice!!)
cease from anger
don't fret (oh look, three times!)
the meek shall inherit the earth and they shall delight themselves in the abundance of peace
so with that, we rest in Him, in His perfect plan for us and continue to look for opportunities to glorify Him in this. we thank you for praying and walking this road with us.
one of these days, i'll let myself get back to the surgery day and share about that. frankly though, my emotions aren't ready to go there.
Tuesday, February 11, 2014
cancerschmancer - update
hi friends, for those of you interested in where we are…here's an update…a very long update….
matt is really tired as he recovers from surgery; he is still trying to work as much as possible and fits in his daily naps between job walks, meetings and phone calls. working full time exhausts him but he has a hard time being still for too long. we have yet to find the balance. he says he has slowed down; i asked compared to what? his work ethic is truly one of the things i love about him - i can't complain.
this may be tmi - feel free to skip this part…
yesterday we saw dr. b, he's the surgeon who took point on the surgery. it was the first time we've seen him as he's been out of the country since we were in the hospital. he put a camera up matt's nose and told matt to blink. he was checking where they biopsied the optic nerve wall and said it was strong - i'll admit, that was weird, yet pretty cool. then he took the silicone sheets out of matt's nose. there was one at the base and then one way, (way!) further up, they were holding "things" together and protecting areas while matt healed because apparently the septum and some other bone and/or flap (?) in there had to be removed because the cancer had gotten to them. we didn't know that until yesterday. matt said he felt like the doctor touched his brain…that very well could have happened. are you crunching up your toes too??
anyway, aside from being really sore and having eye/head pain, matt is hanging in there. the surgeon confirmed surgery went well. he said it was longer than he anticipated but it went well - all things considered.
he reminded us yesterday that because this is an aggressive cancer we have to hit it hard and take the maximum amount of chemo they are willing to do. no matter how many time we've heard that, the words "aggressive cancer" still make me feel like i've hit a brick wall. my knees still go weak and it's hard to breathe - you'd think after 5+ months, i'd be used to those two words. but no. it's the reality. so it's back to taking every thought captive, thinking on whatsoever things are true, clinging to my hope pile from the Word of God and listening to worship around the clock. it's a moment by moment by moment surrender.
i know that my God loves my matt far more than anyone else ever could. He allowed this. He walks with us. and He desires to be glorified in it. i really can't complain when i think about it that way. so we press on.
thank you for loving us, thank you for continuing to provide meals - (for those of you who have asked, click here: meal train); and most importantly, thank you for praying.
matt is really tired as he recovers from surgery; he is still trying to work as much as possible and fits in his daily naps between job walks, meetings and phone calls. working full time exhausts him but he has a hard time being still for too long. we have yet to find the balance. he says he has slowed down; i asked compared to what? his work ethic is truly one of the things i love about him - i can't complain.
this may be tmi - feel free to skip this part…
yesterday we saw dr. b, he's the surgeon who took point on the surgery. it was the first time we've seen him as he's been out of the country since we were in the hospital. he put a camera up matt's nose and told matt to blink. he was checking where they biopsied the optic nerve wall and said it was strong - i'll admit, that was weird, yet pretty cool. then he took the silicone sheets out of matt's nose. there was one at the base and then one way, (way!) further up, they were holding "things" together and protecting areas while matt healed because apparently the septum and some other bone and/or flap (?) in there had to be removed because the cancer had gotten to them. we didn't know that until yesterday. matt said he felt like the doctor touched his brain…that very well could have happened. are you crunching up your toes too??
anyway, aside from being really sore and having eye/head pain, matt is hanging in there. the surgeon confirmed surgery went well. he said it was longer than he anticipated but it went well - all things considered.
he reminded us yesterday that because this is an aggressive cancer we have to hit it hard and take the maximum amount of chemo they are willing to do. no matter how many time we've heard that, the words "aggressive cancer" still make me feel like i've hit a brick wall. my knees still go weak and it's hard to breathe - you'd think after 5+ months, i'd be used to those two words. but no. it's the reality. so it's back to taking every thought captive, thinking on whatsoever things are true, clinging to my hope pile from the Word of God and listening to worship around the clock. it's a moment by moment by moment surrender.
i know that my God loves my matt far more than anyone else ever could. He allowed this. He walks with us. and He desires to be glorified in it. i really can't complain when i think about it that way. so we press on.
thank you for loving us, thank you for continuing to provide meals - (for those of you who have asked, click here: meal train); and most importantly, thank you for praying.
here's a picture from the waiting room of the surgeon's office. someone should have finished their coffee.
yes he was really sleeping.
cancerschmancer - world cancer day
so february 4 was world cancer day.
here are some things I've learned in the past 161 days.
our lives here on earth are temporary; we are here for a short time and Heaven is our goal - that perspective changes the way we live.
iphones learn to autocorrect words like radiation, oncologist, chemotherapy, surgery, surgeons.
people say the darndest (and meanest) things.
it's ok not to understand the big words the doctors use as long as they understand what they are saying - and they understand what they are doing.
trust: trust doctors, trust meds but most importantly, trust Him.
acidic foods like oranges, pineapple and tomatoes are bad; broths, crackers and ginger ale are good.
ask for help. when people offer, take them up on it.
there is nothing better than worshipping loudly and tearfully with your children, knowing He's doing a great work in their hearts - and ours.
surround yourself with people who pray BIG - and thank God that these people have chosen to surround you.
start a Hope Pile - write scripture down on notecards and post it where you'll see it; put the cards in your pocket, in your purse, tape them on your mirror, your kitchen table and at the sink.
anonymous drop offs and unannounced visits are the best.
the condition of the house no longer matters. if you come over and there's laundry, i might let you fold it.
dishes in the sink mean we've been busy eating and spending time doing more important things. i've learned not to sweat it.
there are lots of cool gadgets and tools in the procedure rooms and the doctors rarely notice if they are moved.
it's rare, but is possible, to make a doctor or surgeon laugh.
30 radiation treatments cost more than my house.
wigs are awesome; especially mullet wigs in chemo rooms and hospital rooms.
choose battles - some things, like bed times just aren't important but ice cream for dinner is.
kids are a lot stronger and more resilient than we give them credit for. it's ok to let them know the whole truth because He is growing them in this too. they are being changed.
uncontrollable laughter in the most awkward, inappropriate situations is the best.
prayer changes things; it renews hope; it gives you legs to stand on and air to breathe.
when you pray that He'll take you deeper, strengthen your faith and give you a burning desire for Him, He accomplishes it how He deems perfect without regard to how we might feel.
and i've learned God is so good. all of the time.
here are some things I've learned in the past 161 days.
our lives here on earth are temporary; we are here for a short time and Heaven is our goal - that perspective changes the way we live.
iphones learn to autocorrect words like radiation, oncologist, chemotherapy, surgery, surgeons.
people say the darndest (and meanest) things.
it's ok not to understand the big words the doctors use as long as they understand what they are saying - and they understand what they are doing.
trust: trust doctors, trust meds but most importantly, trust Him.
acidic foods like oranges, pineapple and tomatoes are bad; broths, crackers and ginger ale are good.
ask for help. when people offer, take them up on it.
there is nothing better than worshipping loudly and tearfully with your children, knowing He's doing a great work in their hearts - and ours.
surround yourself with people who pray BIG - and thank God that these people have chosen to surround you.
start a Hope Pile - write scripture down on notecards and post it where you'll see it; put the cards in your pocket, in your purse, tape them on your mirror, your kitchen table and at the sink.
anonymous drop offs and unannounced visits are the best.
the condition of the house no longer matters. if you come over and there's laundry, i might let you fold it.
dishes in the sink mean we've been busy eating and spending time doing more important things. i've learned not to sweat it.
there are lots of cool gadgets and tools in the procedure rooms and the doctors rarely notice if they are moved.
it's rare, but is possible, to make a doctor or surgeon laugh.
30 radiation treatments cost more than my house.
wigs are awesome; especially mullet wigs in chemo rooms and hospital rooms.
choose battles - some things, like bed times just aren't important but ice cream for dinner is.
kids are a lot stronger and more resilient than we give them credit for. it's ok to let them know the whole truth because He is growing them in this too. they are being changed.
uncontrollable laughter in the most awkward, inappropriate situations is the best.
prayer changes things; it renews hope; it gives you legs to stand on and air to breathe.
when you pray that He'll take you deeper, strengthen your faith and give you a burning desire for Him, He accomplishes it how He deems perfect without regard to how we might feel.
and i've learned God is so good. all of the time.
Monday, February 10, 2014
cancerschmancer - the chemo room and james
let me first preface this post by saying, i know it's been a while and there are a lot of surgery details and appointments that i've missed sharing. i'll get to those; however, i wanted to write about our buddy james today, before i forget. this is one man i want to remember when we look back on the "microphone" opportunities.
we listened to one of our friend's teach at harvest oc last week. you can listen to it here. "the family is a microphone" basically the message was about using every opportunity we're given to share the Lord. we are a microphone for Him. while i'm still mulling over all that i learned, matt is putting it into practice.
today we went to chemo. it was the first of three days. because matt went to work at 4:30am and got home as i was leaving for work, we decided we'd go through our one year bible reading together as we sat through chemo. having no idea what divine appointment would be ahead because of this "inconvenience."
we walked into chemo at 1pm, our normal chair wasn't available, the nerve of another patient. so we sat elsewhere. as the room cleared out and patients left, it got quiet, we began to read. not long after, an older "uncle Si" looking and sounding man sat in the chair next to us. i was planted between matt and this man. he came in a wheelchair. he was frail, we later learned he was 75 and had been widowed twice. as we read, he asked what we were reading. he said he read his scriptures at night. has a hard time falling asleep he said. he told us he loves Jesus and his Father, that's God you know. we smiled and said we do too. once he said he wished i had a microphone so he could hear me read better. he leaned as far over to the side of his chair as he could to hear as we went through exodus, matthew, psalms and proverbs. some times his eyes were shut, other times he just watched us and listened.
as the nurse poked his veins, she couldn't get the iv in. she moved to the other side and matt smiled and said, i'll pray she gets it the first try. she did. james, we learned was his name, looked over at us and said, why didn't you pray that the first time? matt smiled and that began a 3 hour conversation.
they talked about why his finger was missing, they talked about how he won a his belt buckel at the rodeo. matt told him how i was in a rodeo too. when james showed interest in that, matt told him proudly that his wife, nodding to me, put boxers on a calf at a rodeo on norco. (true story, but i digress, this is about matt and james...) the nurses laughed. they talked about his two wives and how they died. cancer. he didn't know when his last treatment would be, they haven't told him, he said they want to put a port in him because his veins are just too small anymore. matt offered him snacks and they kept talking. they talked about the history channel, the mynah bird he has at home, his son and how he is a great-great grandfather. they talked about anything and everything. eventually they talked about what churches they attend. matt said harvest, he said the lds church up the street. they talked about james' next treatment, it's in three weeks, matt will be there then too.
finally our time was up. matt got unhooked from his iv and went to use the restroom. james' machine went off but he stayed there in his chair. when matt came back, he asked, matt, will you pray for me? matt didn't hesitate.
in that very moment, do you suppose his eternity changed? we won't know for sure on this side of heaven. they didn't pray the sinner's prayer - per say, but james wanted what he heard from the Word. he wanted to have that peace and His presence, he wanted God's will for his life.
it's hard to express the emotions, sadness for james. frail, alone, so incredibly sick, perhaps close to the end of his life.
proud of matt, i've never heard him ask so many questions in all of his life (ask our kids, that's my job). being bold, listening, sharing, praying, being a microphone for Him.
utter thankfulness, that He would allow us the privilege of spending the afternoon with james. the honor of walking this road and having the chance to pray with james. as we told the kids the story, they agreed, if james' eternal destiny changed, cancer is worth it.
when matt was done praying, the nurses came over and unhooked james from his tether. james and matt shook hands and agreed to meet again in three weeks.
will you join me in praying for james. i am not certain we'll see him again.
here.
but perhaps one day, on the other side.
we listened to one of our friend's teach at harvest oc last week. you can listen to it here. "the family is a microphone" basically the message was about using every opportunity we're given to share the Lord. we are a microphone for Him. while i'm still mulling over all that i learned, matt is putting it into practice.
today we went to chemo. it was the first of three days. because matt went to work at 4:30am and got home as i was leaving for work, we decided we'd go through our one year bible reading together as we sat through chemo. having no idea what divine appointment would be ahead because of this "inconvenience."
we walked into chemo at 1pm, our normal chair wasn't available, the nerve of another patient. so we sat elsewhere. as the room cleared out and patients left, it got quiet, we began to read. not long after, an older "uncle Si" looking and sounding man sat in the chair next to us. i was planted between matt and this man. he came in a wheelchair. he was frail, we later learned he was 75 and had been widowed twice. as we read, he asked what we were reading. he said he read his scriptures at night. has a hard time falling asleep he said. he told us he loves Jesus and his Father, that's God you know. we smiled and said we do too. once he said he wished i had a microphone so he could hear me read better. he leaned as far over to the side of his chair as he could to hear as we went through exodus, matthew, psalms and proverbs. some times his eyes were shut, other times he just watched us and listened.
as the nurse poked his veins, she couldn't get the iv in. she moved to the other side and matt smiled and said, i'll pray she gets it the first try. she did. james, we learned was his name, looked over at us and said, why didn't you pray that the first time? matt smiled and that began a 3 hour conversation.
they talked about why his finger was missing, they talked about how he won a his belt buckel at the rodeo. matt told him how i was in a rodeo too. when james showed interest in that, matt told him proudly that his wife, nodding to me, put boxers on a calf at a rodeo on norco. (true story, but i digress, this is about matt and james...) the nurses laughed. they talked about his two wives and how they died. cancer. he didn't know when his last treatment would be, they haven't told him, he said they want to put a port in him because his veins are just too small anymore. matt offered him snacks and they kept talking. they talked about the history channel, the mynah bird he has at home, his son and how he is a great-great grandfather. they talked about anything and everything. eventually they talked about what churches they attend. matt said harvest, he said the lds church up the street. they talked about james' next treatment, it's in three weeks, matt will be there then too.
finally our time was up. matt got unhooked from his iv and went to use the restroom. james' machine went off but he stayed there in his chair. when matt came back, he asked, matt, will you pray for me? matt didn't hesitate.
in that very moment, do you suppose his eternity changed? we won't know for sure on this side of heaven. they didn't pray the sinner's prayer - per say, but james wanted what he heard from the Word. he wanted to have that peace and His presence, he wanted God's will for his life.
it's hard to express the emotions, sadness for james. frail, alone, so incredibly sick, perhaps close to the end of his life.
proud of matt, i've never heard him ask so many questions in all of his life (ask our kids, that's my job). being bold, listening, sharing, praying, being a microphone for Him.
utter thankfulness, that He would allow us the privilege of spending the afternoon with james. the honor of walking this road and having the chance to pray with james. as we told the kids the story, they agreed, if james' eternal destiny changed, cancer is worth it.
when matt was done praying, the nurses came over and unhooked james from his tether. james and matt shook hands and agreed to meet again in three weeks.
will you join me in praying for james. i am not certain we'll see him again.
here.
but perhaps one day, on the other side.
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