so a few weeks ago matt had his "routine" pet scan and mri. the tests he'll have for many many years. the pet scan takes place every 4 months, the mri every 2 months. both are checking to see if there is any cancer in his body. "they" don't know enough about this cancer to know where it might show up, "they" just say it most likely will. "they" say most people don't make it beyond a year from diagnosis. it's not that "they" are wrong, there's just not enough data to really know for sure. this cancer is rare. it's also aggressive. that we all know.
so though matt has been put in remission, every ache, pain, lump, stuffy nose, headache, moment of blurred vision, plugged ears, days of fatigue, etc. puts me in the what if realm. forget the fact that he works like crazy and is a little older than he used to be. my mind forever plays ping pong with what "they" say and what the Word of God says. we know the latter is Truth, it's Life, it can be depended upon. we know that God has a will to accomplish and defies what "they" say in order to do that.
and for that, i'm very thankful.
about a week after the scans, we received the call, i'm sorry, i called them…twice…to get the scan results. when they were put in the system, i was told remission continues. there's no sign of cancer. i cried, we rejoiced. it was a (early) sweet christmas gift.
i treasure matt. i want to grow old with him. i want to jump in mud puddles. i want to share a chocolate shake. i want to hold his hand every day. i want to stare into his blue blue eyes. i want to fall asleep listening to his heart beat. i want to live fully with matt. for we know none of us are guaranteed tomorrow.
then today the oncologist called matt. she said she got back in the country yesterday and reviewed matt's scans.
1. the spot in his chest is smaller than it was in the last scan.
2. the spot in his stomach is also smaller.
he wrote it all down, said thank you and hung up.
then he gave me the paper. spots??
ok so have you ever been driving 55mph (or 65mph) on a california freeway and thrown your husband's truck into reverse? well basically the vehicle screeches to a stop and the engine is killed. like with no warning the brakes lock up and you can't start the car or put it in drive until you are at a full and complete stop. all the while praying that no one hits you. i know this because i've done it twice. but really, that's all totally beside the point. my point is, that's how i felt today. moving along, things are really, really good and then everything comes to a screeching halt. my world stopped. my heart pounded, i couldn't breathe.
i called the oncologists office and left a message.
within a few minutes the ever so patient pa called me and explained the oncologist's notes. she said they have been watching these spots for a while and though they are smaller than the last time, they aren't hugely concerned but want to get the stomach checked out. in addition to a million questions, i let her know this was the first we'd heard of the "spots."
she said, "sarah, don't worry until we tell you to worry." i said, so this isn't cancer? she said no, no one ever even mentioned cancer, matt is fine. nothing about matt's case is normal but it's gerd. i asked what gerd was and she said it's short for a reflux issue, perhaps acid reflux, he'll be referred out to a gastro…something or other…ologist and he'll have an upper endoscopy. there's nothing to worry about. i said he hasn't had a single symptom, she said that's ok. we're just being cautious.
i googled gerd, and according to webmd, matt has about 3 days, give or take. not really, but this is precisely why i haven't googled a single thing about his cancer. it's all so much to take in.
then i had a meltdown.
totally. completely. sobbing. a snotty, teary, gasping for air, 3 year old meltdown.
and then that still small voice reminded me to get my bible and re-read the truth He showed me today in the one year bible.
that still small voice said, do you trust me? do you remember what i have done?
do you know that i am God?
i re-read the verses and shared them with matt and the kids through my snot and tears.
micah 6:5 says,
"don't you remember my people. how king balak of moab tried to have you cursed. and how balaam son of beor blessed you instead? and remember your journey from acacia grove to gilgal, when I, the Lord, did everything I could to teach you about My faithfulness."
and verse 7:15-16a says,
"yes, says the Lord, i will do mighty miracles for you, like those i did when i rescued you from slavery in egypt. all the nations of the world will stand amazed at what the Lord will do for you."
i do trust my Lord. i do believe in His faithfulness. i know that i know that i know, whatever He decides is perfect and right.
and yet i so identify with the apostle paul in romans 7:15, "i don't really understand myself, for i want to do what is right, but i don't do it. instead i do what i hate."
and for me, that's losing sight of His promises. it's losing sight of all that He has done so far. it's losing sight that He walks with me no matter what He decides is perfect for my future.
Tuesday, December 16, 2014
Wednesday, November 12, 2014
cancerschmancer - He calls us to crazy
three weeks ago, matt and i received a facebook message from a friend. in this message was a link to a short video of a man sharing and this note, "matt, a friend of mine posted this video of his friend. is this cancer similar to what you had?" i watched the 5 minute video in disbelief, no words at all - it was the same cancer, the man talking said word for word what matt had. he watched it and we couldn't get to the computer fast enough to look this video up. we wondered when it had been posted. was it old? was this video circulating the internet or was it new? we prayed it was old.
we immediately found it and as it turned out, the video had just been posted about an hour earlier. it was real. and it was scary. we tracked down paul and amy, we searched and discovered they live in louisiana and he is a senior pastor to a calvary affiliate. paul was just diagnosed with a rare and aggressive cancer. he had a tumor in his nasal cavity. matt contacted paul, i contacted his wife and then we prayed and we waited. our hearts suddenly ached, though we knew nothing about them, and they knew nothing about us. we had jesus and a rare aggressive cancer in common. matt was a survivor, paul was just starting out. we knew God doesn't waste our pain, we know He doesn't walk us down a road without a reason. aren't we are called to comfort one another with the same comfort we've received? so we introduced ourselves, i told amy i wanted to first tell her a little about myself so she wouldn't think i'm crazy...famous last words? or perhaps famous first words?? time would tell.
matt posted the video asking people to pray. and our faithful friends committed to pray for this family.
in his message, matt offered to talk to paul, walk with him, and answer any questions he would have. you see with this rare cancer, there aren't blogs you can look up, there aren't message boards, i'm not even sure webmd has much to say. within a day or so, they each contacted us and thus began very real dialogue.
paul and matt spoke on the phone two days later, and amy and i messaged each other often. by thursday our hearts were burdened to go see them. matt and i talked and prayed but said nothing to anyone. within a few hours, someone generously approached matt and said he felt we should go and offered to send us. he said matt, you can offer hope, you are alive. you lived joyfully and lived out your faith. we knew that was confirmation so tickets were purchased, the car was rented and the hotel was secured. we'd leave in a week. we thought paul may be in the hospital for surgery. we could spend time there if they'd allow us. on monday, one week after hearing about paul's cancer, i spoke with amy for the first time, it was a hard day at a doctor appointment and we had the opportunity to talk and pray. my heart was anxious to be by her side. to tell her i understood.
every detail was being worked out. the doors opened so fast and so wide, we didn't doubt for a second that we should be going. matt and i went back and forth whether or not to tell them we were coming and after praying, we decided not to. we didn't want to add stress or any burden, we didn't want them to feel they had to entertain us at all. we wanted to just be there. we weren't sure how we were going meet up with them. we couldn't just show up at their house, that would be crazy. we couldn't call them and ask if they could meet us at starbucks... again, crazy. maybe join them on their morning run - super creepy crazy. then paul shared on his facebook that the church was having a prayer meeting each night from 6:30-7:30, and people could join them in prayer. since he wouldn't be in the hospital, we thought this would be perfect! we decided we'd go straight to the church, thinking this would be the less crazy of all the options. we sat on this plane with no idea what the Lord had for us, and we were on our way. about 30 minutes before we landed, i looked at matt and i said, we're crazy aren't we? he just smiled at me and said yes, indeed we were. but we rested in knowing God opened the doors and this was what we were going to do.
our plane landed, we grabbed our bags and car and we were on our way. it was 7pm. as we drove to the church, i got super nervous, literally shaking, having second thoughts nervous, but i held matt's hand and he parked the car. i texted a few girls at home that were praying and said we're walking in.
from the foyer we couldn't see inside the sanctuary until the doors opened. matt opened one door, we stepped in and staring right at us from a chair was paul. he looked at us, blinked a few times, looked again and stood up to walk over towards us. we smiled a "please don't be mad, i promise we're normal-ish" kind of smile. i went to amy, hugged her and heard a whisper, "sarah?" i said yes. paul hugged matt and just said wow, he sorta shook his head and smiled really big. we apologized for interrupting the prayer meeting and told them we wanted join them. it was a little funny on our part thinking they'd just continue on praying and worshiping, but we all did our best not to interrupt the remainder of the night. i'm sure they were baffled at the whole thing. it was an amazing night of worship - so intimate and we had total peace knowing we were exactly where God wanted us on the night of our 21st anniversary.
that night we went to dinner, and we saw them the next day. amy posted on her facebook that seeing us walk in was like seeing lazarus, such a shock and such a miracle. we got to meet people from their church and were able to spend time with paul and amy each day we were there - we took each opportunity as a gift. it was a little nuts for us to just show up, but they graciously allowed us in their lives. we met their kids, paul's parents, and their loving church body. seriously our hearts were so full. i can't even describe how amazing the weekend was. on sunday when it was almost time to leave, i cried. no matter how hard i tried, i couldn't stop the tears from falling, i wasn't ready to leave. my heart ached at the thought of leaving the next day. as we spent time with paul and amy, we talked about so many things, cancer, the Lord, how we're all from California, we run, we homeschool, our kids are the same age - exactly!, our faith, matt and paul's similar humor, we had so many things in common.
and then monday, we had one more opportunity to eat together and chat before we had to leave, if i could have frozen time, i would have. then sadly, it was time to catch our plane. it was so bittersweet. their church became our family. we were so loved and embraced, i didn't expect my heart to be so transformed in just a few days. those 5 days in lousiana were among the best i'd ever spent.
there are so many stories from the weekend, we saw God's hand in it from start to finish. i share this for a few reasons, not to draw attention to us at all, we're just people doing what we felt God calling us to do.
but what i learned is that sometimes the Lord calls us to crazy, He calls us out of our comfort zones, out of what feels normal. He calls us to walk in faith, we don't know the how's or the why's, we can't see His master plan. He told noah to build an ark, a big ark. noah didn't know what rain was. He told sarah she'd have a baby and sarah was old. he told ananias to talk to saul, saul who killed Christians. how many times in the old and new testament do we see God call people to do things that are a little crazy, perhaps they don't make sense? God didn't need any of these people. He didn't need us. He has plenty who are willing. but He allows us to be part of His plan. if matt and i would have said no, this is crazy, no one would have known any different. God would have provided someone else. and we could have missed out on this very special blessing that He allowed us. that thought broke my heart, i wonder how many other opportunities i've missed out on because i wasn't willing. what a sweet privilege it is when we get to be a little crazy for Him.
paul is heading into surgery this week and we know the power of prayer, we've seen it. his tumor is larger than matt's was. it's the size of a tennis ball. it's pressing against very dangerous parts of his head. surgery will no doubt be long, 8-10 hours. he'll have an extensive recovery time possibly followed up with treatment. i have no doubt that paul and amy will use every opportunity to glorify God in this. they'll find the joy, they'll seek Him, they trust Him.
please cover them in prayer. cover their kids and church family. pray for the surgeon on wednesday. pray for a quick recover. we trust our God to be big and mighty.
friends, meet our friends, paul and amy.
we immediately found it and as it turned out, the video had just been posted about an hour earlier. it was real. and it was scary. we tracked down paul and amy, we searched and discovered they live in louisiana and he is a senior pastor to a calvary affiliate. paul was just diagnosed with a rare and aggressive cancer. he had a tumor in his nasal cavity. matt contacted paul, i contacted his wife and then we prayed and we waited. our hearts suddenly ached, though we knew nothing about them, and they knew nothing about us. we had jesus and a rare aggressive cancer in common. matt was a survivor, paul was just starting out. we knew God doesn't waste our pain, we know He doesn't walk us down a road without a reason. aren't we are called to comfort one another with the same comfort we've received? so we introduced ourselves, i told amy i wanted to first tell her a little about myself so she wouldn't think i'm crazy...famous last words? or perhaps famous first words?? time would tell.
matt posted the video asking people to pray. and our faithful friends committed to pray for this family.
in his message, matt offered to talk to paul, walk with him, and answer any questions he would have. you see with this rare cancer, there aren't blogs you can look up, there aren't message boards, i'm not even sure webmd has much to say. within a day or so, they each contacted us and thus began very real dialogue.
paul and matt spoke on the phone two days later, and amy and i messaged each other often. by thursday our hearts were burdened to go see them. matt and i talked and prayed but said nothing to anyone. within a few hours, someone generously approached matt and said he felt we should go and offered to send us. he said matt, you can offer hope, you are alive. you lived joyfully and lived out your faith. we knew that was confirmation so tickets were purchased, the car was rented and the hotel was secured. we'd leave in a week. we thought paul may be in the hospital for surgery. we could spend time there if they'd allow us. on monday, one week after hearing about paul's cancer, i spoke with amy for the first time, it was a hard day at a doctor appointment and we had the opportunity to talk and pray. my heart was anxious to be by her side. to tell her i understood.
every detail was being worked out. the doors opened so fast and so wide, we didn't doubt for a second that we should be going. matt and i went back and forth whether or not to tell them we were coming and after praying, we decided not to. we didn't want to add stress or any burden, we didn't want them to feel they had to entertain us at all. we wanted to just be there. we weren't sure how we were going meet up with them. we couldn't just show up at their house, that would be crazy. we couldn't call them and ask if they could meet us at starbucks... again, crazy. maybe join them on their morning run - super creepy crazy. then paul shared on his facebook that the church was having a prayer meeting each night from 6:30-7:30, and people could join them in prayer. since he wouldn't be in the hospital, we thought this would be perfect! we decided we'd go straight to the church, thinking this would be the less crazy of all the options. we sat on this plane with no idea what the Lord had for us, and we were on our way. about 30 minutes before we landed, i looked at matt and i said, we're crazy aren't we? he just smiled at me and said yes, indeed we were. but we rested in knowing God opened the doors and this was what we were going to do.
our plane landed, we grabbed our bags and car and we were on our way. it was 7pm. as we drove to the church, i got super nervous, literally shaking, having second thoughts nervous, but i held matt's hand and he parked the car. i texted a few girls at home that were praying and said we're walking in.
from the foyer we couldn't see inside the sanctuary until the doors opened. matt opened one door, we stepped in and staring right at us from a chair was paul. he looked at us, blinked a few times, looked again and stood up to walk over towards us. we smiled a "please don't be mad, i promise we're normal-ish" kind of smile. i went to amy, hugged her and heard a whisper, "sarah?" i said yes. paul hugged matt and just said wow, he sorta shook his head and smiled really big. we apologized for interrupting the prayer meeting and told them we wanted join them. it was a little funny on our part thinking they'd just continue on praying and worshiping, but we all did our best not to interrupt the remainder of the night. i'm sure they were baffled at the whole thing. it was an amazing night of worship - so intimate and we had total peace knowing we were exactly where God wanted us on the night of our 21st anniversary.
that night we went to dinner, and we saw them the next day. amy posted on her facebook that seeing us walk in was like seeing lazarus, such a shock and such a miracle. we got to meet people from their church and were able to spend time with paul and amy each day we were there - we took each opportunity as a gift. it was a little nuts for us to just show up, but they graciously allowed us in their lives. we met their kids, paul's parents, and their loving church body. seriously our hearts were so full. i can't even describe how amazing the weekend was. on sunday when it was almost time to leave, i cried. no matter how hard i tried, i couldn't stop the tears from falling, i wasn't ready to leave. my heart ached at the thought of leaving the next day. as we spent time with paul and amy, we talked about so many things, cancer, the Lord, how we're all from California, we run, we homeschool, our kids are the same age - exactly!, our faith, matt and paul's similar humor, we had so many things in common.
and then monday, we had one more opportunity to eat together and chat before we had to leave, if i could have frozen time, i would have. then sadly, it was time to catch our plane. it was so bittersweet. their church became our family. we were so loved and embraced, i didn't expect my heart to be so transformed in just a few days. those 5 days in lousiana were among the best i'd ever spent.
there are so many stories from the weekend, we saw God's hand in it from start to finish. i share this for a few reasons, not to draw attention to us at all, we're just people doing what we felt God calling us to do.
but what i learned is that sometimes the Lord calls us to crazy, He calls us out of our comfort zones, out of what feels normal. He calls us to walk in faith, we don't know the how's or the why's, we can't see His master plan. He told noah to build an ark, a big ark. noah didn't know what rain was. He told sarah she'd have a baby and sarah was old. he told ananias to talk to saul, saul who killed Christians. how many times in the old and new testament do we see God call people to do things that are a little crazy, perhaps they don't make sense? God didn't need any of these people. He didn't need us. He has plenty who are willing. but He allows us to be part of His plan. if matt and i would have said no, this is crazy, no one would have known any different. God would have provided someone else. and we could have missed out on this very special blessing that He allowed us. that thought broke my heart, i wonder how many other opportunities i've missed out on because i wasn't willing. what a sweet privilege it is when we get to be a little crazy for Him.
paul is heading into surgery this week and we know the power of prayer, we've seen it. his tumor is larger than matt's was. it's the size of a tennis ball. it's pressing against very dangerous parts of his head. surgery will no doubt be long, 8-10 hours. he'll have an extensive recovery time possibly followed up with treatment. i have no doubt that paul and amy will use every opportunity to glorify God in this. they'll find the joy, they'll seek Him, they trust Him.
please cover them in prayer. cover their kids and church family. pray for the surgeon on wednesday. pray for a quick recover. we trust our God to be big and mighty.
friends, meet our friends, paul and amy.
Thursday, September 25, 2014
cancerschmancer - whats new
a friend of mine recently sent me a text. she said she checked the blog and the last entry was a month ago and she was looking for an update. it completely blessed me.
there's nothing, yet so much. my mind is scattered, cluttered, i'm up, i'm down, i'm anxious, i'm at peace. i'm so thankful He remains constant. i'm thankful i can run to Him at anytime and He's there.
as for matt:
when people ask how he's doing, matt always says "sarah give them the short story."
so the short story is, he's good. he's still in remission - we've hit the 2 month mark. hallelujah!! isn't our God good?
my version is always way longer, matt says i bore people with too many details. so if you agree with him, feel free to close this link and move on to your other web surfing and blog reading. i promise not to be offended. in fact, if you do, when i write a book, this will all be new to you. (insert half serious smiley face and a plea for prayer!)
a few weeks ago we saw the surgeon and he said everything looks good. he said there's still "something" but he believes it's the tissue that is still inflamed from surgery and it's nothing to worry about. he said if he saw anything, he'd biopsy it right there. he told us we could take a break from the medicated nasal rinses and just use saline. (praise the Lord cause those puppies were expensive!!) as usual, he cleaned out matt's surgery area and said he'd see us in 8 weeks. 8 weeks!! that's the longest stretch he's given us. i asked how long we'd see him so frequently, he said a few more times at 8 weeks apart and once we hit the one year mark from surgery - which is january - we could possibly see him every 3-4 months. i asked how long we'd do that. he paused and looked at me and said "sarah, you're not going any where. i'll be seeing you guys for the next 20 years, in fact, we're going to be good friends when this is all over." so i told him he better invite us over for thanksgiving. he laughed, made a joke and we left the office. the girls at the front desk commented on how well matt must be doing because they have seen us walk out crying too many times and knew things were good based on how we were all smiles.
matt went to have another test at the audiologist and he said the hearing loss is about the same. the good news is the medication didn't make it worse as they thought. matt feels his hearing has decreased though and the ringing is louder. we've noticed matt strains to hear people and in restaurants or other places with loud background noise, he doesn't even try. he just looks at me and i tell him what's being said. we're a team, it's another way He's allowing us to become one. i'm reminded of old people and how she always answers for him. it always got me mad, i thought, let him have an opinion. well, now i get it, i can probably stop coloring my hair and let the gray burst forth because we're becoming "them." the audiologist said he'd talk about hearing aids in about a year but wanted all of the healing and treatment to be completely done first. matt will have another hearing test in 6 months just so they can monitor it.
the lump in matt's breast area seems to be getting bigger. we'll bring it up again at the next oncologist appointment. we're told they can go away in a few months, but they are "normal" given all of the meds matt has been on over the past 18 months.
his smell and taste haven't come back at all. his energy isn't where it was before cancer, but it's getting there. he says he's at 85% and that always makes me laugh. i get 50% or 75%, i'm not sure what 85% is. maybe a bit more than 75%, but not quite to 100.
he's back to work at o'dark thirty. he leaves at 4am and comes home tired. he has headaches. his neck and back hurt. my mind want's to go "there" but i'm keeping those thoughts at bay and replacing them with promises from the Word. i'm attributing it all to the ever changing california weather, working again like he always did and straining to hear people. as hard as it is, we're praising God. because matt is still here.
about 6 months ago, friends of ours invited us to join them and my brother's family for a week of camping in mammoth. it was slated for the last week of august. we said we couldn't commit as we didn't have any idea where we'd be at that time. they got our spot and told us that if matt is well, and we know he will be - come.
and we did. it was an exhausting trip with many memories made. we laughed, we ate too much, we hiked, biked, canoed, fished, talked and played. it also just so happened that we were there exactly one year to the day of matt's diagnosis.
for an entire year, august 28 was a day etched in my mind as the hardest i'd ever lived. not only did matt have cancer, but it was that day that i had to tell the kids.
for an entire year, august 28 was a day etched in my mind as the hardest i'd ever lived. not only did matt have cancer, but it was that day that i had to tell the kids.
so this year on august 28, we went on a hike. what we saw at the destination was breathtaking. and so significant. we went to rainbows falls. and as we know, the rainbow signifies how He keeps His promises. i couldn't help but reflect back on the day a year earlier and all of the events that brought us to that place and that day one year later. i got to watch my matt, my brother, and matt (our friend) all dive in the icy water and swim under rainbow falls. it was the most glorious site.
matt's next mri is october 7 at 5:15pm. we don't expect results until the following week. and then we see the surgeon a few weeks after that.
i'm thankful for the Word. it brings me such comfort. in the one year bible, i'm reading in isaiah. about a week ago, i read how hezekiah was ill and a prophet came to him and told him, the Lord has said get your life in order, you are about to die. and it says hezekiah put his face toward the wall and prayed and wept bitterly. and the Lord said, i have heard your prayers, i have seen your tears and i will surely add to your days 15 years.
from the day i read that, i've thought about it over and over. i don't know how many years the Lord is adding to matt's life, but i believe because so many of you prayed and wept with us, you along with me, turned your faces toward the floor pleading. and the Lord has extended matt's time. God showed us mercy, when "they" said it didn't look good. if i could hug each of you and thank you, i would. my heart is overwhelmed.
as much as i hate the symptoms, i'm thankful for them because they bring us to a place of remembering what He has done for us and how dependent we are on Him. His Word is so alive when i open the pages, i understand what it means to have the Holy Spirit as our Comforter - isn't He though. i never ever want to forget.
so today, we press on. we live. we laugh. we worship. we're blessed meeting people who have been praying for us. we loving hearing how God has used matt's story to touch them in some way. we're humbled He'd use us at all. thank you for the continued prayer and if you're still reading, thank you. (see matt, i told you. ha!)
and one more from mammoth. cause i can. isn't he a doll?
Wednesday, August 20, 2014
cancerschmancer - remission...then a lump
as many of you know, we got the good news: REMISSION!!!
it came after 11 months. behind us are many treatments, too many doctor appointments to count, medications that fill our fridge, counter and cupboard. and carrying us, are people praying, more than we could ever know on this side of heaven. we're thankful for this day.
i cried when our oncologist told us. tears of utter gratefulness to our God.
so many emotions went through my mind. thankfulness. mercy. love. knowing He allowed matt more time on this earth to complete the work He started. that's a huge responsibility too, because we know He isn't done with him. He still has a purpose to accomplish.
i feel like i've been given more time with this man i love.
and i love him. i never knew i could love him so deeply. cancer showed me. cancer showed me a lot of things.
we're given a second chance. days not afforded to everyone and i certainly didn't want to waste a moment. i want to listen to his heart beat every night, laying with my head on his chest until my neck gets a kink. i want to feel my hand in his. i want to stare into those blue eyes. i want to listen to his voice as he prays. as he shares his heart with the kids. i want to see that ornery twinkle, the way he smiles when he's about to do something that will no doubt make us all laugh. i want to live every day. intentionally, purposefully and until we're exhausted.
i don't know how many days of remission we'll have. it could be until our next doctor appointment, it could be until matt is 90. only One knows that for sure. the rest of us live day by day.
this past weekend matt had the opportunity to talk with luke, of for King & Country. he has faced serious illness over the past year and these two men met and talked for a very long time. i heard a little of what they talked about, stuck around to take a picture of the two, and then peeled off to get some work done at the crusade.
one thing luke said that i complete understand is this:
i'm ok if i never get better. i actually never want the symptoms to completely go away because i want to experience God like this forever. i never want to lose sight of Him and forget everything He has done. i agree with that.
but i want to be done. but on the other hand, luke's words went through my head. i can't experience Him so deeply without this moment by moment dependance. but i want to be done.
then monday happened. one day after this conversation.
matt discovered a lump in his right breast area. the oncologist wanted to see us asap. we got in there, she felt the lump. her look said she was concerned and she ordered tests that would take place the next day. she said nothing about matt is normal and we need to know what is going on. we can't depend on what we think we know in his case. nope, she wasn't smiling this time. she said not to worry, breast cancer in men is very rare. and then she stopped herself from saying anything else. we've all heard that before.
ugh.
an ultrasound and mammogram were ordered for tuesday morning.
i cried again. we sat the kids down. we tried to mask our fear. we ate in n out and talked.
we laughed a bit about dad getting a mammogram. matt renamed it a "man-o-gram."the kids had questions about how exactly it would happen, being a man and all. i told them to get two books and slam them together. i laughed, matt did not. ok, he did. sorta. and the kids did.
and then we focused on what we knew. matt had a lump. that was all we knew.
we prayed. we dug into the word. it became my lifeline again. it was all so vivid and exactly what i needed. He's faithful. He has an unfailing love. He created us for such a time as this. (i'm reading esther in the old testament in the one year bible reading - how timely eh?)
and we went in for the tests. scared but at peace.
on the way in matt looked at me, he was concerned, we talked. he didn't want to start over. i told him i didn't either. but if it meant more time with him, i'd do whatever it took. he didn't share that same feelings. if it was cancer, did we have the strength to have more chemo, more radiation, another surgery and all that goes with that? i'd have to dig deep. we couldn't go there. it was all way too soon.
he had his "man-o-gram" and we waited for the doctor to come in and give us results.
they told us we didn't need the ultrasound after all. they'd call us soon.
we stayed and waited to see the doctor anyway. he was in a procedure and the wait would be long, he couldn't see us. however, when we explained the journey, we were told it was benign and the lump was given a name. we were given a paper explaining it and after quickly scanning it, we put it away and went home.
we still wait for the oncologist to get the report and give us the "what's next" but we're told its all ok. it's not urgent. it's not cancer. it may be a side effect from the steroids and chemo. it's not normal, but is explainable.
sometimes this feels like a roller coaster, not just the ups and downs, but the anticipation is almost worst than the actual ride. but its in that waiting that He becomes so real again. it's the part i never want to forget.
so for the next month, until we see the doctor, we live. we laugh. we love. we hold hands. we sit too close. we re-prioritize. we rejoice every day. we worship. we dig into His word. we look for ways to glorify Him.
we'll see the doctors every month for years. scans are every two months. and with each appointment we walk in with many questions and unknowns but we trust He has a perfect plan. this is a new normal for us.
often i'm encouraged by people who are praying for us. who have followed our story. who are facing their own battle. thank you for sharing these things with us. we're so blessed and honored you'd walk with us and pray.
it came after 11 months. behind us are many treatments, too many doctor appointments to count, medications that fill our fridge, counter and cupboard. and carrying us, are people praying, more than we could ever know on this side of heaven. we're thankful for this day.
i cried when our oncologist told us. tears of utter gratefulness to our God.
so many emotions went through my mind. thankfulness. mercy. love. knowing He allowed matt more time on this earth to complete the work He started. that's a huge responsibility too, because we know He isn't done with him. He still has a purpose to accomplish.
i feel like i've been given more time with this man i love.
and i love him. i never knew i could love him so deeply. cancer showed me. cancer showed me a lot of things.
we're given a second chance. days not afforded to everyone and i certainly didn't want to waste a moment. i want to listen to his heart beat every night, laying with my head on his chest until my neck gets a kink. i want to feel my hand in his. i want to stare into those blue eyes. i want to listen to his voice as he prays. as he shares his heart with the kids. i want to see that ornery twinkle, the way he smiles when he's about to do something that will no doubt make us all laugh. i want to live every day. intentionally, purposefully and until we're exhausted.
i don't know how many days of remission we'll have. it could be until our next doctor appointment, it could be until matt is 90. only One knows that for sure. the rest of us live day by day.
this past weekend matt had the opportunity to talk with luke, of for King & Country. he has faced serious illness over the past year and these two men met and talked for a very long time. i heard a little of what they talked about, stuck around to take a picture of the two, and then peeled off to get some work done at the crusade.
one thing luke said that i complete understand is this:
i'm ok if i never get better. i actually never want the symptoms to completely go away because i want to experience God like this forever. i never want to lose sight of Him and forget everything He has done. i agree with that.
but i want to be done. but on the other hand, luke's words went through my head. i can't experience Him so deeply without this moment by moment dependance. but i want to be done.
then monday happened. one day after this conversation.
matt discovered a lump in his right breast area. the oncologist wanted to see us asap. we got in there, she felt the lump. her look said she was concerned and she ordered tests that would take place the next day. she said nothing about matt is normal and we need to know what is going on. we can't depend on what we think we know in his case. nope, she wasn't smiling this time. she said not to worry, breast cancer in men is very rare. and then she stopped herself from saying anything else. we've all heard that before.
ugh.
an ultrasound and mammogram were ordered for tuesday morning.
i cried again. we sat the kids down. we tried to mask our fear. we ate in n out and talked.
we laughed a bit about dad getting a mammogram. matt renamed it a "man-o-gram."the kids had questions about how exactly it would happen, being a man and all. i told them to get two books and slam them together. i laughed, matt did not. ok, he did. sorta. and the kids did.
and then we focused on what we knew. matt had a lump. that was all we knew.
we prayed. we dug into the word. it became my lifeline again. it was all so vivid and exactly what i needed. He's faithful. He has an unfailing love. He created us for such a time as this. (i'm reading esther in the old testament in the one year bible reading - how timely eh?)
and we went in for the tests. scared but at peace.
on the way in matt looked at me, he was concerned, we talked. he didn't want to start over. i told him i didn't either. but if it meant more time with him, i'd do whatever it took. he didn't share that same feelings. if it was cancer, did we have the strength to have more chemo, more radiation, another surgery and all that goes with that? i'd have to dig deep. we couldn't go there. it was all way too soon.
he had his "man-o-gram" and we waited for the doctor to come in and give us results.
they told us we didn't need the ultrasound after all. they'd call us soon.
we stayed and waited to see the doctor anyway. he was in a procedure and the wait would be long, he couldn't see us. however, when we explained the journey, we were told it was benign and the lump was given a name. we were given a paper explaining it and after quickly scanning it, we put it away and went home.
we still wait for the oncologist to get the report and give us the "what's next" but we're told its all ok. it's not urgent. it's not cancer. it may be a side effect from the steroids and chemo. it's not normal, but is explainable.
sometimes this feels like a roller coaster, not just the ups and downs, but the anticipation is almost worst than the actual ride. but its in that waiting that He becomes so real again. it's the part i never want to forget.
so for the next month, until we see the doctor, we live. we laugh. we love. we hold hands. we sit too close. we re-prioritize. we rejoice every day. we worship. we dig into His word. we look for ways to glorify Him.
we'll see the doctors every month for years. scans are every two months. and with each appointment we walk in with many questions and unknowns but we trust He has a perfect plan. this is a new normal for us.
often i'm encouraged by people who are praying for us. who have followed our story. who are facing their own battle. thank you for sharing these things with us. we're so blessed and honored you'd walk with us and pray.
Monday, July 28, 2014
cancerschmancer - the cost of cancer
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.
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.
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.
Monday, May 12, 2014
cancerschmancer - 18 days interrupted
there's so much happening now, this update seemed too long for facebook. so if you're reading this, if you've been following our story, if you're praying, thank you.
three weeks ago today marked the beginning of the last round of chemo. there's was a celebration. we'd hit a milestone. balloons and cupcakes, big rubber noses were all brought out in the chemo room. i mean what else do you do to celebrate nasal cancer? they sang for us and wrote us notes that said "we never want to see you again." and "don't come back." we were overjoyed!
the next week, may 1, we saw the surgeon. he de-gunked matt's nasal area, brain lining and sent what he found on to culture. he recommended meds to treat the staph infection and told us that he'd see us in a month. but, he said, if we need to come in before then, please do. we said, thanks but no thanks.
18 days with no doctor appointments!!
my calendar was clear for 2 entire weeks. what joy! we were excited….
we haven't had this kind of stretch in over a year.
we ditched the kids, town and all responsibility for the weekend! it was glorious!!
then the culture came back.
matt's staph infection had worsened and now he had a secondary bacterial infection. before stronger meds could be administered, matt needed a hearing test. forget 18 days, so much for even going a single week without a doctor appointment. the meds recommended to fight this could lead to hearing loss and we needed to know how bad his hearing was before we could move forward. i told them i knew he couldn't hear. we joke that he has selective hearing, but in reality matt has legitimate hearing loss.
but to appease them, we got our appointment "stat" and thursday of last week we met with the audiologist.
he ran tests and concluded matt's hearing loss was indeed worse than when he tested him back in november (after radiation, mid chemo). he called it "husband hearing". matt couldn't hear high frequency sounds. crowded rooms, restaurants, loud places are more difficult. he can't distinguish sounds well. he can completely function, but it won't be easy to understand what people are saying if he isn't look at them and we'll hear "what?" a lot.
we're told this was brought on by chemo and radiation and could be treated with hearing aids if matt wanted. before matt could even start to answer, the doctor said we had time to think about it because we'd have to wait until after treatment is done so he could further assess him. i guess matt always has time to change his mind…sigh. but for now, one thing at a time.
the doctor said the hearing wouldn't come back. it's a problem with the inner ear. matt also has ringing in his ears. that, we understand is the brain compensating for the hearing loss. and there is no treatment for that. matt can drown it out with music in the car or white noise. aside from that, he just needs to get used to it. he tries to tune it out.
i asked the audiologist if he has ever had a patient with hearing loss as a result of this type of med cocktail and he said no. (shocking right? we get that a lot!) he said, "we can treat the hearing issue; do what you have to do to get rid of the infections."
so that day, the report went to the oncologist who sent it the surgeon. it was decided to move forward with this cocktail knowing the risks. if we don't treat the staph infection, the hearing won't be a problem. get my drift?
that night taylor came into our room and leaned over to kiss matt. she said, "good night daddy." he smiled and looked up at her and replied, "i love you too sweetheart."
we laughed and shook our heads, it's true, he can't hear.
today matt went back to the surgeon's office to get everything cleaned out again before he starts the cocktail tomorrow. the idea is that the meds will more effectively hit the affected area if the crusting and staph goop are gone. since we've done this countless times, and the surgeon wasn't even going to be there, matt drove himself to that appointment at uci.
well what do you know, the surgeon showed up after the sucking, scraping, and excavating session that the resident did on matt. he scoped matt's nose with the camera and said everything looks really good. he said healing looks like it's going really well.
and he decided to remove a bone. (uh what?!!)
he made two cuts and pulled out a piece the size of a fingernail. matt text me and gave me this update. i have since called the surgeon to find out what bone and why did it need to come out? did he see something that caused concern? i trust him completely, but we've never discussed a need for this before so it sort of surprised me. matt has a headache, understandably. he said it was the most painful appointment yet. and then he drove himself to work.
so with that, we start the new cocktail tomorrow. we see the oncologist next week and the surgeon the following week.
if i have things calculated correctly, we'll have more scans early june.
proverbs 31:25, "she is clothed with strength and dignity, and she laughs without fear of the future."
i look forward to the days of laughter again.
three weeks ago today marked the beginning of the last round of chemo. there's was a celebration. we'd hit a milestone. balloons and cupcakes, big rubber noses were all brought out in the chemo room. i mean what else do you do to celebrate nasal cancer? they sang for us and wrote us notes that said "we never want to see you again." and "don't come back." we were overjoyed!
the next week, may 1, we saw the surgeon. he de-gunked matt's nasal area, brain lining and sent what he found on to culture. he recommended meds to treat the staph infection and told us that he'd see us in a month. but, he said, if we need to come in before then, please do. we said, thanks but no thanks.
18 days with no doctor appointments!!
my calendar was clear for 2 entire weeks. what joy! we were excited….
we haven't had this kind of stretch in over a year.
we ditched the kids, town and all responsibility for the weekend! it was glorious!!
then the culture came back.
matt's staph infection had worsened and now he had a secondary bacterial infection. before stronger meds could be administered, matt needed a hearing test. forget 18 days, so much for even going a single week without a doctor appointment. the meds recommended to fight this could lead to hearing loss and we needed to know how bad his hearing was before we could move forward. i told them i knew he couldn't hear. we joke that he has selective hearing, but in reality matt has legitimate hearing loss.
but to appease them, we got our appointment "stat" and thursday of last week we met with the audiologist.
he ran tests and concluded matt's hearing loss was indeed worse than when he tested him back in november (after radiation, mid chemo). he called it "husband hearing". matt couldn't hear high frequency sounds. crowded rooms, restaurants, loud places are more difficult. he can't distinguish sounds well. he can completely function, but it won't be easy to understand what people are saying if he isn't look at them and we'll hear "what?" a lot.
we're told this was brought on by chemo and radiation and could be treated with hearing aids if matt wanted. before matt could even start to answer, the doctor said we had time to think about it because we'd have to wait until after treatment is done so he could further assess him. i guess matt always has time to change his mind…sigh. but for now, one thing at a time.
the doctor said the hearing wouldn't come back. it's a problem with the inner ear. matt also has ringing in his ears. that, we understand is the brain compensating for the hearing loss. and there is no treatment for that. matt can drown it out with music in the car or white noise. aside from that, he just needs to get used to it. he tries to tune it out.
i asked the audiologist if he has ever had a patient with hearing loss as a result of this type of med cocktail and he said no. (shocking right? we get that a lot!) he said, "we can treat the hearing issue; do what you have to do to get rid of the infections."
so that day, the report went to the oncologist who sent it the surgeon. it was decided to move forward with this cocktail knowing the risks. if we don't treat the staph infection, the hearing won't be a problem. get my drift?
that night taylor came into our room and leaned over to kiss matt. she said, "good night daddy." he smiled and looked up at her and replied, "i love you too sweetheart."
we laughed and shook our heads, it's true, he can't hear.
today matt went back to the surgeon's office to get everything cleaned out again before he starts the cocktail tomorrow. the idea is that the meds will more effectively hit the affected area if the crusting and staph goop are gone. since we've done this countless times, and the surgeon wasn't even going to be there, matt drove himself to that appointment at uci.
well what do you know, the surgeon showed up after the sucking, scraping, and excavating session that the resident did on matt. he scoped matt's nose with the camera and said everything looks really good. he said healing looks like it's going really well.
and he decided to remove a bone. (uh what?!!)
he made two cuts and pulled out a piece the size of a fingernail. matt text me and gave me this update. i have since called the surgeon to find out what bone and why did it need to come out? did he see something that caused concern? i trust him completely, but we've never discussed a need for this before so it sort of surprised me. matt has a headache, understandably. he said it was the most painful appointment yet. and then he drove himself to work.
so with that, we start the new cocktail tomorrow. we see the oncologist next week and the surgeon the following week.
if i have things calculated correctly, we'll have more scans early june.
proverbs 31:25, "she is clothed with strength and dignity, and she laughs without fear of the future."
i look forward to the days of laughter again.
Friday, April 18, 2014
cancerschmancer - to try to live again
sorry it's been a while. i know i promised an update almost 2 weeks ago when we got our new scans.
but since that day, we've tried to live normally again. at least for a short time. we've learned with cancer, you never know what's next so you have to take every opportunity given. these past 11 days we've tried our best to live without cancer.
as i mentioned, we got good news at the oncologist: "according to the latest MRI and PET/CT, there's no evidence of cancer"
what does that mean?
is he cancer free? no, those words won't be spoken until he's had years of clean scans.
is there still cancer? only God knows.
what they did find were two spots that "lit up" in the scans. one was the spleen and that, they believe is a result of the bone marrow shot, neulasta. i'll admit, in the back of my mind, i wonder if it is indeed the shot. this cancer is known to appear in the organs. i'm trying to take that thought captive and believe it is the neulasta.
the other spot that was lit up was in the nasal area. it was 2.7 cm or mm, i'm not sure. still big enough. we're told it's "considerably smaller" than what showed at the previous scan - 6 weeks ago. they believe this is tissue healing from surgery. as long as it gets smaller and doesn't stay the same size - or grow - we're ok.
they say.
i reminded the oncologist we've been told this is rare, aggressive and because the tumor didn't have a hard shell, and is known to grow feelers, she nodded her head in agreement, i asked, at what point would cancer cells show up if any were left behind during surgery? we're not sure was the response and that's why we'll do scans often. that's why she (and the city of hope team and the UCI team) recommend a 4th round of chemo - just in case.
the surgeon will continue to check matt's nose, brain area and optic nerve area with his camera every month for a year and if he sees anything at all, we go straight back into surgery. they call it a biopsy, but because of the location, it's a repeat surgery.
matt will also have an MRI every 2 months and a PET/CT every 4 months for about 5 years.
so did we get good news? yes.
is my heart still concerned? yes.
i'm just not at the jump up and down stage. yet.
but are we praising God, absolutely.
He has done great things and we are filled with joy. psalm 126:3
we took the kids and that news and went to DQ!
and we're at peace. they are treating him aggressively and we're thankful. we're just not done.
and that's why we're trying to live again.
cancer is disruptive. it's emotional. and it's expensive. boy is it expensive.
imagine doubling up on your house payment each month, but not getting another house. and not having any warning. that's about what it's like. literally. i'm reminded of the saying, kids nickle and dime you to death. so does cancer.
yes we have insurance, thank God. but the co-pays are ridiculously high and there are a lot of them. having said that, God has provided, we can't complain. at all. we're not lacking. we're adjusting and we're growing in our faith. we're living with cancer. and this is part of it. matt and i often laugh when a bill comes because we have no idea how it's going to be paid and then we cry in awe and humbleness when God provides in ways we can't even imagine.
and then this came in the mail... again, we're tearfully in awe.
when i looked at this hefty bill and the receipt with the red PAID tucked in the fold, i couldn't help but think about good friday. in the same way, we should be billed for our sins but we're not. He paid for them on that cross. we're free and clear because of His love for us. it's undeserving, unmerited. grace. it's all so much to take in.
the day after the diagnosis, matt was brought into the pastors meeting and they laid hands on him and prayed. every aspect was covered. i cried. i remember clearly though, one pastor prayed for financial provision. i remember thinking, we have insurance, it's all good. apparently this pastor knew things i did not. i'm thankful he covered that aspect because i had no idea. yet God has and we trust will continue to hear the prayer of that man as well as the others who prayed for every other aspect of matt's cancer.
because this is such a roller coaster in all areas, we try to live normally when we can.
this has not only been emotional on us, but the kids too. they are growing, as we are. they struggle, as we do. their lives have been clearly disrupted too. they try to not complain, but it's hard for them. very hard. we're all learning grace.
so we live.
so we try to go places without a plan.
we try to take every opportunity to do things when matt feels good.
we were recently blessed with a "do something fun" fund.
it's not for medical bills, it's not for co-pays. it's a gift from Him they said, and we were to use it to enjoy moments with the kids, make memories.
have fun.
laugh.
this person clearly knew what our family needed.
i'm tearing up as i type.
humbled again.
so we decided to take the kids to magic mountain. at one point, matt opted to stay off a ride and take a nap. it was ok. i'd rather have matt nap and be with us, than miss out all together. levi caught a lizard and scared the girls at a ride exit. i told levi when i count to three, jump towards the girls. and i snapped the picture.
it.
was.
hilarious!
the girls eventually forgave him.
we rode batman backwards. the kids got stuck on colossus as it went backwards when it shut down mid ride. we laughed. we screamed. we ate too much. we walked too much. we stayed out way too late. we lived normally...
...and it felt good.
i'm thankful for that because today matt gets blood work done.
monday begins another 3 day round of chemo
with that comes more pills, more iv pokes, more aches and pains, more nausea, more tiredness, more reminders that we are living with cancer - it's all happening too soon. again.
and the following week we see the surgeon.
in all of this though, we're thankful. i recently read a blog entry by a sweet friend, jennie lusko. she talks about her 10 year anniversary to her husband and what they have experienced. though our situations are completely different, i wholeheartedly agree with what she writes:
"While dreams have come true over and over again, even in our worst nightmare God has held us, and brought us closer in a depth we'd never knew had we not walked through these waters (as much as i wish we could know the dept of intimacy without the pain.)"
it's true. i wish we could experience the depth of intimacy with Christ without the pain, but it's not possible. if i'm being honest, i'd like to experience the promised land without the desert experience. but then would the promised land be as good?
we're thankful. we're blessed. we press on.
but since that day, we've tried to live normally again. at least for a short time. we've learned with cancer, you never know what's next so you have to take every opportunity given. these past 11 days we've tried our best to live without cancer.
as i mentioned, we got good news at the oncologist: "according to the latest MRI and PET/CT, there's no evidence of cancer"
what does that mean?
is he cancer free? no, those words won't be spoken until he's had years of clean scans.
is there still cancer? only God knows.
what they did find were two spots that "lit up" in the scans. one was the spleen and that, they believe is a result of the bone marrow shot, neulasta. i'll admit, in the back of my mind, i wonder if it is indeed the shot. this cancer is known to appear in the organs. i'm trying to take that thought captive and believe it is the neulasta.
the other spot that was lit up was in the nasal area. it was 2.7 cm or mm, i'm not sure. still big enough. we're told it's "considerably smaller" than what showed at the previous scan - 6 weeks ago. they believe this is tissue healing from surgery. as long as it gets smaller and doesn't stay the same size - or grow - we're ok.
they say.
i reminded the oncologist we've been told this is rare, aggressive and because the tumor didn't have a hard shell, and is known to grow feelers, she nodded her head in agreement, i asked, at what point would cancer cells show up if any were left behind during surgery? we're not sure was the response and that's why we'll do scans often. that's why she (and the city of hope team and the UCI team) recommend a 4th round of chemo - just in case.
the surgeon will continue to check matt's nose, brain area and optic nerve area with his camera every month for a year and if he sees anything at all, we go straight back into surgery. they call it a biopsy, but because of the location, it's a repeat surgery.
matt will also have an MRI every 2 months and a PET/CT every 4 months for about 5 years.
so did we get good news? yes.
is my heart still concerned? yes.
i'm just not at the jump up and down stage. yet.
but are we praising God, absolutely.
He has done great things and we are filled with joy. psalm 126:3
we took the kids and that news and went to DQ!
and we're at peace. they are treating him aggressively and we're thankful. we're just not done.
and that's why we're trying to live again.
cancer is disruptive. it's emotional. and it's expensive. boy is it expensive.
imagine doubling up on your house payment each month, but not getting another house. and not having any warning. that's about what it's like. literally. i'm reminded of the saying, kids nickle and dime you to death. so does cancer.
yes we have insurance, thank God. but the co-pays are ridiculously high and there are a lot of them. having said that, God has provided, we can't complain. at all. we're not lacking. we're adjusting and we're growing in our faith. we're living with cancer. and this is part of it. matt and i often laugh when a bill comes because we have no idea how it's going to be paid and then we cry in awe and humbleness when God provides in ways we can't even imagine.
and then this came in the mail... again, we're tearfully in awe.
when i looked at this hefty bill and the receipt with the red PAID tucked in the fold, i couldn't help but think about good friday. in the same way, we should be billed for our sins but we're not. He paid for them on that cross. we're free and clear because of His love for us. it's undeserving, unmerited. grace. it's all so much to take in.
the day after the diagnosis, matt was brought into the pastors meeting and they laid hands on him and prayed. every aspect was covered. i cried. i remember clearly though, one pastor prayed for financial provision. i remember thinking, we have insurance, it's all good. apparently this pastor knew things i did not. i'm thankful he covered that aspect because i had no idea. yet God has and we trust will continue to hear the prayer of that man as well as the others who prayed for every other aspect of matt's cancer.
because this is such a roller coaster in all areas, we try to live normally when we can.
this has not only been emotional on us, but the kids too. they are growing, as we are. they struggle, as we do. their lives have been clearly disrupted too. they try to not complain, but it's hard for them. very hard. we're all learning grace.
so we live.
so we try to go places without a plan.
we try to take every opportunity to do things when matt feels good.
we were recently blessed with a "do something fun" fund.
it's not for medical bills, it's not for co-pays. it's a gift from Him they said, and we were to use it to enjoy moments with the kids, make memories.
have fun.
laugh.
this person clearly knew what our family needed.
i'm tearing up as i type.
humbled again.
so we decided to take the kids to magic mountain. at one point, matt opted to stay off a ride and take a nap. it was ok. i'd rather have matt nap and be with us, than miss out all together. levi caught a lizard and scared the girls at a ride exit. i told levi when i count to three, jump towards the girls. and i snapped the picture.
it.
was.
hilarious!
the girls eventually forgave him.
we rode batman backwards. the kids got stuck on colossus as it went backwards when it shut down mid ride. we laughed. we screamed. we ate too much. we walked too much. we stayed out way too late. we lived normally...
...and it felt good.
i'm thankful for that because today matt gets blood work done.
monday begins another 3 day round of chemo
with that comes more pills, more iv pokes, more aches and pains, more nausea, more tiredness, more reminders that we are living with cancer - it's all happening too soon. again.
and the following week we see the surgeon.
in all of this though, we're thankful. i recently read a blog entry by a sweet friend, jennie lusko. she talks about her 10 year anniversary to her husband and what they have experienced. though our situations are completely different, i wholeheartedly agree with what she writes:
"While dreams have come true over and over again, even in our worst nightmare God has held us, and brought us closer in a depth we'd never knew had we not walked through these waters (as much as i wish we could know the dept of intimacy without the pain.)"
it's true. i wish we could experience the depth of intimacy with Christ without the pain, but it's not possible. if i'm being honest, i'd like to experience the promised land without the desert experience. but then would the promised land be as good?
we're thankful. we're blessed. we press on.
Tuesday, April 1, 2014
cancerschmancer - too healthy for cancer...what?
well after two treatments, the effects of chemo have hit.
the good news is, today we had a new nurse and she got the IV the first try. they have learned matt's veins are "too healthy" for cancer...what? they have thick walls and the needles bend when they hit - ironic right? sometimes when they put the needle in it goes through both sides of the vein wall and we have a "blown vein," other times the veins just bump out of the way. but today, the nurse didn't hesitate or attempt to go at it gently, and, well, she nailed it. matt is a little sore, but at least it only took one poke!
after today's treatment, he is super tired and overall just. doesn't. feel. good.
he opted for a simple soup for dinner with a side of tylenol and is hitting the sack as i update. personally, i'll take tired over nausea any day. he is achy and his body needs rest to heal. he still has treatment tomorrow so please pray as they give him a bit more of this cocktail. it's hard for him to rest when he wants to spend time with the kids and keep up the house. we keep reminding each other, this is just a season.
little update on the "what's next"...
as i previously said, thursday we see the surgeon. he'll put the camera up matt's nose; he'll take a sample to see if the staph infection is gone and he'll look around the surgery site (up to the brain!) and see if it's all healing well.
thursday, matt will also give himself another bone marrow booster shot. this will intensify the aches for about a week and then he'll start to feel better.
and we found out that this friday matt will have his pet/ct. sometime between now and then he'll also have his mri. these both require time in the tube. not good when you don't feel good.
none of these appointments are too pleasant, but to do them right after 3 days of chemo and it's a whole different level of miserable. prayer please?
we expect to get the results of the scans when we see the oncologist on monday. this will determine the course of treatment or if the end is in sight...you can guess how i'm praying!! if everything is clear, we have one more round of chemo april 21 and then we're done except for tons of scans and doctor appointments.
matt was a little concerned that i posted a picture of him working in the chemo room.
i'll clarify, no his company doesn't make him do that; you know that saying, "if you love what you do, you'll never a work a day in your life"? well that's matt. he LOVES what he does. his company has been extremely supportive, the TRL family has been utterly amazing. i just like to tease matt because i imagined that we'd spend quality time in chemo - and most days we do.
i'm doing a little catch up in deuteronomy and today i read 10:21. it says, "He is your praise and He is your God, who has done for you these great and awesome things which your eyes have seen." i love that. we've seen such great and awesome things on our cancer road. in fact, as i read this, i'm reminded, our very eyes have seen the cancer leave matt's body. if you remember before, we shared that chunks of the tumor came out as matt blew his nose. gross, i know. but really, who sees their cancer leave?
our very eyes have seen so many other things - too many to mention in fact. but yeah, it's great and it's very awesome.
a chapter later i read about the promised land. it's full of blessings. it's rich. it's close.
chapter 11:12 says, "a land for which the Lord your God cares; the eyes of the Lord your God are always on it, from the beginning of the year to the end."
we trust our promise land is coming soon.
we're almost there
and
i
can't
wait!
the good news is, today we had a new nurse and she got the IV the first try. they have learned matt's veins are "too healthy" for cancer...what? they have thick walls and the needles bend when they hit - ironic right? sometimes when they put the needle in it goes through both sides of the vein wall and we have a "blown vein," other times the veins just bump out of the way. but today, the nurse didn't hesitate or attempt to go at it gently, and, well, she nailed it. matt is a little sore, but at least it only took one poke!
after today's treatment, he is super tired and overall just. doesn't. feel. good.
he opted for a simple soup for dinner with a side of tylenol and is hitting the sack as i update. personally, i'll take tired over nausea any day. he is achy and his body needs rest to heal. he still has treatment tomorrow so please pray as they give him a bit more of this cocktail. it's hard for him to rest when he wants to spend time with the kids and keep up the house. we keep reminding each other, this is just a season.
little update on the "what's next"...
as i previously said, thursday we see the surgeon. he'll put the camera up matt's nose; he'll take a sample to see if the staph infection is gone and he'll look around the surgery site (up to the brain!) and see if it's all healing well.
thursday, matt will also give himself another bone marrow booster shot. this will intensify the aches for about a week and then he'll start to feel better.
and we found out that this friday matt will have his pet/ct. sometime between now and then he'll also have his mri. these both require time in the tube. not good when you don't feel good.
none of these appointments are too pleasant, but to do them right after 3 days of chemo and it's a whole different level of miserable. prayer please?
we expect to get the results of the scans when we see the oncologist on monday. this will determine the course of treatment or if the end is in sight...you can guess how i'm praying!! if everything is clear, we have one more round of chemo april 21 and then we're done except for tons of scans and doctor appointments.
matt was a little concerned that i posted a picture of him working in the chemo room.
i'll clarify, no his company doesn't make him do that; you know that saying, "if you love what you do, you'll never a work a day in your life"? well that's matt. he LOVES what he does. his company has been extremely supportive, the TRL family has been utterly amazing. i just like to tease matt because i imagined that we'd spend quality time in chemo - and most days we do.
i'm doing a little catch up in deuteronomy and today i read 10:21. it says, "He is your praise and He is your God, who has done for you these great and awesome things which your eyes have seen." i love that. we've seen such great and awesome things on our cancer road. in fact, as i read this, i'm reminded, our very eyes have seen the cancer leave matt's body. if you remember before, we shared that chunks of the tumor came out as matt blew his nose. gross, i know. but really, who sees their cancer leave?
our very eyes have seen so many other things - too many to mention in fact. but yeah, it's great and it's very awesome.
a chapter later i read about the promised land. it's full of blessings. it's rich. it's close.
chapter 11:12 says, "a land for which the Lord your God cares; the eyes of the Lord your God are always on it, from the beginning of the year to the end."
we trust our promise land is coming soon.
we're almost there
and
i
can't
wait!
Tuesday, March 25, 2014
cancerschmancer - breaking camp
for the first time, i feel like i have a word from the Lord in this.
don't get me wrong, He has spoken to my heart plenty. daily He ministers to me. from the Word, i draw strength. it keeps me moving. breathing. living.
from the Word, i've been reminded He gives life. He is the author and finisher. He shelters us with His wings. He leads us. He walks with us. He is good. He is faithful. He wants us to pray. He desires we grow. He loves us. He went to prepare a place for us. our lives here are temporary. i have learned to be patient. (ok, so we're working on this one). i've learned to follow His lead. to trust Him with my whole heart. that His will is perfect. He has a purpose to accomplish. He desires that we would glorify Him.
every time i read the Word, something speaks to my heart. but through this, i haven't gotten a "word" from the Lord, if you will, on which direction we'll go. people have shared their experiences with me. while it's encouraging; that was for them.
when people share a meaningful verse with me, i'm blessed. truly. and it is added to my Hope pile. i read from that pile often. i reflect on those verses. i draw strength from them.
one verse the Lord gave me early on was this, 2 chronicles 2:17, "but you will not even need to fight. take your positions; then stand still and watch the Lord's victory."
while that's a good word. and one i committed to memory that day, i'm not entirely sure what it means. of course, it's the Lord's battle. i trust Him to fight it. i'll stand back and watch. but ultimately, will the Lord choose to heal matt or will He take my beloved Home? i don't know. i just know it's His battle to fight. He will have victory. often i've asked, but what does it mean???!!!! i know what i WANT it to mean, but what does it actually mean in light of our situation? you see my dilemma?
so yesterday in my quiet time, the Lord spoke to my heart for the first time like this since matt was diagnosed. when He speaks words that bring Hope, it's different than when others speak it. don't ask me how it's different, it just is. and i got excited. my heart started pounding and i was all giddy. i had a complete peace in my heart.
in deuteronomy 1:6 the Lord speaks to them and says, you have dwelt long enough at this mountain. and in verse 7 they are told to break camp. their 40 years in the desert was over. it was time to move on.
then in luke 6:21 i read, blessed are you who weep now, for you shall laugh.
now i don't know how much longer the Lord will have us in this place. we haven't gotten any new news. no new scans. no new treatment plan. no phone calls. nothing new. it's just a "feeling." it may be a wrong feeling. i don't know.
we still have 2 more chemo rounds (each of 3 treatments) scheduled at this point and many doctor appointments and more scans in the next few weeks before we'll know anything for sure. but if it's all clear, we have about 5 more weeks in the desert and then it will be time to break camp. oh could it be true? laughter is coming!
i'm holding onto these as promises. they bring hope in this dark desperate situation.
as i meditated on this more, and thought about it all day and night, i was reminded that they spent 40 years in the wilderness. i also thought about church the day before. pastor Greg shared about a man who was healed after 38 years.
nope, not going there.
for me, i'm trusting that it's almost time to break camp.
don't get me wrong, He has spoken to my heart plenty. daily He ministers to me. from the Word, i draw strength. it keeps me moving. breathing. living.
from the Word, i've been reminded He gives life. He is the author and finisher. He shelters us with His wings. He leads us. He walks with us. He is good. He is faithful. He wants us to pray. He desires we grow. He loves us. He went to prepare a place for us. our lives here are temporary. i have learned to be patient. (ok, so we're working on this one). i've learned to follow His lead. to trust Him with my whole heart. that His will is perfect. He has a purpose to accomplish. He desires that we would glorify Him.
every time i read the Word, something speaks to my heart. but through this, i haven't gotten a "word" from the Lord, if you will, on which direction we'll go. people have shared their experiences with me. while it's encouraging; that was for them.
when people share a meaningful verse with me, i'm blessed. truly. and it is added to my Hope pile. i read from that pile often. i reflect on those verses. i draw strength from them.
one verse the Lord gave me early on was this, 2 chronicles 2:17, "but you will not even need to fight. take your positions; then stand still and watch the Lord's victory."
while that's a good word. and one i committed to memory that day, i'm not entirely sure what it means. of course, it's the Lord's battle. i trust Him to fight it. i'll stand back and watch. but ultimately, will the Lord choose to heal matt or will He take my beloved Home? i don't know. i just know it's His battle to fight. He will have victory. often i've asked, but what does it mean???!!!! i know what i WANT it to mean, but what does it actually mean in light of our situation? you see my dilemma?
so yesterday in my quiet time, the Lord spoke to my heart for the first time like this since matt was diagnosed. when He speaks words that bring Hope, it's different than when others speak it. don't ask me how it's different, it just is. and i got excited. my heart started pounding and i was all giddy. i had a complete peace in my heart.
in deuteronomy 1:6 the Lord speaks to them and says, you have dwelt long enough at this mountain. and in verse 7 they are told to break camp. their 40 years in the desert was over. it was time to move on.
then in luke 6:21 i read, blessed are you who weep now, for you shall laugh.
now i don't know how much longer the Lord will have us in this place. we haven't gotten any new news. no new scans. no new treatment plan. no phone calls. nothing new. it's just a "feeling." it may be a wrong feeling. i don't know.
we still have 2 more chemo rounds (each of 3 treatments) scheduled at this point and many doctor appointments and more scans in the next few weeks before we'll know anything for sure. but if it's all clear, we have about 5 more weeks in the desert and then it will be time to break camp. oh could it be true? laughter is coming!
i'm holding onto these as promises. they bring hope in this dark desperate situation.
as i meditated on this more, and thought about it all day and night, i was reminded that they spent 40 years in the wilderness. i also thought about church the day before. pastor Greg shared about a man who was healed after 38 years.
nope, not going there.
for me, i'm trusting that it's almost time to break camp.
Sunday, March 23, 2014
cancerschmancer - don't look back
today's post is something that has been heavy on my heart over the past week. i felt i needed to write it down. to remember it. so i can reflect back at a later day. hold myself accountable. share my heart in honest form.
if you are interested. if you struggle with this. if you want to know where my heart is today, join me.
lately, i've struggled with looking back.
in an earlier post i shared about the day of surgery and the surgeon saying, if only you had only... that post can be found here, but i'll warn you, grab a kleenex.{the surgery day}
anyway, there are many fronts of the big storm around me, smaller tornadoes, a little rain, waves with high swells, sometimes the only thing holding me still is the anchor. hebrews 6:19 says hope is our anchor.
an anchor keeps a boat from moving. hope keeps me in place. it keeps my eyes focused properly. without that anchor, i'd be tossed about. i'd drown.
it's all part of the big storm i'm going through in my life. cancer is only part of it.
i look in the fridge, i see the antibiotic matt has been taking for 28 days.
i look on the kitchen counter and i see his current meds. in the cupboard are the ones "just in case."
the hook near the door, where he used to hang baseball caps, now holds beanies.
my purse now contains pain meds and ear plugs.
watching matt ache, seeing his bald head, knowing his energy level isn't what it used to be burdens my heart. i know it's a direct result of the cancer.
today i put a new lotion on my hands and asked him to smell it. it was pretty strong, he shook his head.
nope. nothing.
the other night we had a spicy amazing mexican pork dinner made for us. he said he could taste the pepper.
grrrrr.
the kids and i often have to repeat ourselves. we tease that he has an excuse for the selective hearing. but really, it's not funny. it's just our way of coping.
i want him to smell. taste. hear.
daily we are reminded cancer is part of our home.
if we'd only... no i can't go there.
because we didn't.
we didn't discover it sooner.
we didn't opt for surgery before treatment as one medical center advised only after the fact.
we didn't know how to prepare.
rather than being pro-active, in a sense we are being reactive.
the kids are getting older. taylor is two and a half years from being 18. levi is two years behind her. i feel like cancer has robbed us of a precious season of their teenage years. i have been reflecting back on them as young kids. babies. toddlers. the elementary years. it causes my heart to ache. not the sentimental, my babies are growing up kind, but i am angry. because we'll never get this time back.
yes we learned a lot, don't get me wrong. and God has been faithful. He's taught us many things in this.
but i feel that we've been robbed. in my mind this isn't how we were to spend taylor's 15th year and levi's 13th year.
now even just looking at pictures "life of before" makes my heart ache. if i knew then what i know now, would i have done things differently when they were little?
i'd have slowed down.
i'd have focused more on reading to them instead of ...
we'd have played games.
gone on adventures.
if only...there are so many regrets.
but i'm reminded of what it says in the Word.
in genesis 19 we read that lot's wife was told don't look back.
she did and she died.
did she long for what she used to have? did she hesitate in her obedience? i'm not sure. but i know she did the very thing she was told not to do. she looked back.
proverbs 4:25 says, let your eyes look straight ahead. fix your gaze directly before you.
fix my gaze. to stare intently.
don't be distracted.
and philippians 3:13 tells us to forget that which is behind and strain for what is ahead.
strain.
of course we can learn from the past. but to focus on it may not be the best idea. have you ever tried to run a race while looking behind you? you can't win that way. you have to focus your eyes on the prize and strain to the finish line.
as i meditate on this, i have a lump in my throat. a heavy heart. a physical ache.
so many things i could have done differently. but by thinking about what i missed yesterday, i am missing out on today.
so this week my goal is to keep my eyes on the prize.
train my mind to think about heaven and the mansion He went to prepare for me.
stare and strain.
if you are interested. if you struggle with this. if you want to know where my heart is today, join me.
lately, i've struggled with looking back.
in an earlier post i shared about the day of surgery and the surgeon saying, if only you had only... that post can be found here, but i'll warn you, grab a kleenex.{the surgery day}
anyway, there are many fronts of the big storm around me, smaller tornadoes, a little rain, waves with high swells, sometimes the only thing holding me still is the anchor. hebrews 6:19 says hope is our anchor.
an anchor keeps a boat from moving. hope keeps me in place. it keeps my eyes focused properly. without that anchor, i'd be tossed about. i'd drown.
it's all part of the big storm i'm going through in my life. cancer is only part of it.
i look in the fridge, i see the antibiotic matt has been taking for 28 days.
i look on the kitchen counter and i see his current meds. in the cupboard are the ones "just in case."
the hook near the door, where he used to hang baseball caps, now holds beanies.
my purse now contains pain meds and ear plugs.
watching matt ache, seeing his bald head, knowing his energy level isn't what it used to be burdens my heart. i know it's a direct result of the cancer.
today i put a new lotion on my hands and asked him to smell it. it was pretty strong, he shook his head.
nope. nothing.
the other night we had a spicy amazing mexican pork dinner made for us. he said he could taste the pepper.
grrrrr.
the kids and i often have to repeat ourselves. we tease that he has an excuse for the selective hearing. but really, it's not funny. it's just our way of coping.
i want him to smell. taste. hear.
daily we are reminded cancer is part of our home.
if we'd only... no i can't go there.
because we didn't.
we didn't discover it sooner.
we didn't opt for surgery before treatment as one medical center advised only after the fact.
we didn't know how to prepare.
rather than being pro-active, in a sense we are being reactive.
the kids are getting older. taylor is two and a half years from being 18. levi is two years behind her. i feel like cancer has robbed us of a precious season of their teenage years. i have been reflecting back on them as young kids. babies. toddlers. the elementary years. it causes my heart to ache. not the sentimental, my babies are growing up kind, but i am angry. because we'll never get this time back.
yes we learned a lot, don't get me wrong. and God has been faithful. He's taught us many things in this.
but i feel that we've been robbed. in my mind this isn't how we were to spend taylor's 15th year and levi's 13th year.
now even just looking at pictures "life of before" makes my heart ache. if i knew then what i know now, would i have done things differently when they were little?
i'd have slowed down.
i'd have focused more on reading to them instead of ...
we'd have played games.
gone on adventures.
if only...there are so many regrets.
but i'm reminded of what it says in the Word.
in genesis 19 we read that lot's wife was told don't look back.
she did and she died.
did she long for what she used to have? did she hesitate in her obedience? i'm not sure. but i know she did the very thing she was told not to do. she looked back.
proverbs 4:25 says, let your eyes look straight ahead. fix your gaze directly before you.
fix my gaze. to stare intently.
don't be distracted.
and philippians 3:13 tells us to forget that which is behind and strain for what is ahead.
strain.
of course we can learn from the past. but to focus on it may not be the best idea. have you ever tried to run a race while looking behind you? you can't win that way. you have to focus your eyes on the prize and strain to the finish line.
as i meditate on this, i have a lump in my throat. a heavy heart. a physical ache.
so many things i could have done differently. but by thinking about what i missed yesterday, i am missing out on today.
so this week my goal is to keep my eyes on the prize.
train my mind to think about heaven and the mansion He went to prepare for me.
stare and strain.
Tuesday, March 18, 2014
cancerschmancer - round 2 and then some
thought i'd write an update.
though it seems not much is going on right now, that in itself is an update.
last week matt finished round 2 of chemo, that's three more days of poison behind us. thinking about chemo, that's what it is. it kills the bad. and the good. it's the route we've chosen to take.
then thursday he gave himself a marrow booster shot. the kids and i watched. matt said i couldn't administer it to him because i seemed a little too eager. whatever.
so we watched him pinch the little bit of fat he has in his belly with one hand, and hold the shot in the other.
and then we waited. he hesitated. and hesitated. we all laughed. finally he stuck the needle in and gave himself the injection. it really isn't a big deal - if you are used to doing that sort of thing. we're not. i think he'll get one more of these during the course of this treatment.
the benefit of the booster is that it will jump start his white blood cell count with the hopes that his numbers will be high enough for the next round of chemo at the appointed time. the downfall is that it makes his bones ache because the marrow is busy working and producing new cells. his back, the bones in his head, his armpits. everything. he aches. it's literally an ache from head to toe.
and he is very tired. he said he feels like he's 90. with all of the meds and bald head, his need for naps, i told him i think he is 90. we both chuckled. he teases me, i tease him. it's how we cope. we tease and we laugh.
he naps often. he gets very fatigued just walking across a street. it's sad, but it's ok. it's a season. levi mowed the lawn. i swept the pool, levi cleaned out the filters. we all have a new normal for this season. matt needs to rest. it's so hard for him. he doesn't sit still well.
matt has neuropathy, he has a constant ringing in his ears. he isn't nauseous - praise the Lord. his weight is exactly where it was when he was diagnosed almost 7 months ago. has it been 7 months really? sigh.
his weight has fluctuated throughout this whole thing, varying in total by 30 pounds from his highest weight after thanksgiving to his lowest after surgery. so it is an amazing feat to be at the exact weight. me? i'm up 10 pounds. because when matt feels like eating, we both eat. but enough about me.
we're told he may not get his taste or smell back. the surgeon said it in way that made us wonder if the olfactory gland was altered (or removed?) during surgery. maybe it's due to having cancer in the nasal area. maybe it's from chemo. who knows. but yesterday he told me lunch was the best meal he's eaten in a long time. i was so excited and asked what exactly he could taste. after thinking about it and taking another sip of his iced tea, he shook his head and told me nothing, it must have been the cold ice in the refreshing drink. so now we say, this is the best textured dinner ever. the kids have joined in. when dinner isn't amazing, i get this, "mom, you nailed the texture of those carrots!" and we laugh. it's a huge bummer matt can't taste or smell, but all things considered, it's ok. it has to be ok right? what option do we have?
we'll still pray for a miracle, the God who created us, who loves us, who died for us and rose for us, can certainly restore that which the doctors say is "probably not going to return." He defies the impossible. He accomplishes His will despite odds so that He would be glorified.
amen?
last week after chemo matt asked me to make cobbler, he was craving it. one thing i've learned is that during chemo, if he craves anything, we do what we can to get it because he doesn't crave much.
so when he mentioned a cobbler, i made one.
i put it in the oven and went outside. the berries started to burn against the hot pan, the cobbler wasn't burnt, just starting to smell that way. i ran in the house and as i was grabbing it out of the oven, i said, matt, you didn't smell that?!!! he shook his head. nope.
it hit me. how often have i taken something so simple as smell for granted.
the orange blossoms in spring.
a bbq in summer.
perfume.
puppy breathe.
a newborn baby.
fresh towels and sheets.
smoke.
sigh.
i called the surgeons office to see if the "seasoned eyes" looked over the latest MRI, there wasn't anything written in our file yet. so we wait.
i called the oncologist to schedule the next scan. i was told the PET/CT and MRI would be sometime in april. so we wait.
in two weeks, matt gets round 3 of chemo. then another booster shot.
then scans, and more appointments with all of the doctors and then more chemo.
then maybe we'll be done? i hesitate to say it because with every appointment things change. scans tell us the new course of treatment.
today i read in the one year bible, psalm 61. it was perfect.
it starts off with this,
hear my cry o God; listen to my prayer.
from the ends of the earth i call to You, i call as my heart grows faint; lead me to the rock that is higher than i.
it says, i will abide in Your tabernacle forever; i will trust in the shelter of Your wings.
i'm not sure who reads this. the purpose in writing was because so many people suggested i keep a log. i wanted to remember things. but i saw last week the blog is being hit from countries around the world - i'll admit, i had to look one country up. never heard of it.
so if you are reading this, thank you. it's so overwhelming to think that people are praying, people we don't know. or to think someone might even be encouraged by our story. cancer affects so many. we all have our own "cancer" - that thing that burdens us to the core. that situation that brings us to our knees. no matter what your "cancer" is, my prayer is that His Word would draw you in, it will be your strength, it will become the very air you breathe. if you are walking with us, reading this, growing with us, i'm encouraged. and really, i'd love to hear from you.
and of course, thank you for praying for my matt. we continue to trust Him as we walk this cancer road.
though it seems not much is going on right now, that in itself is an update.
last week matt finished round 2 of chemo, that's three more days of poison behind us. thinking about chemo, that's what it is. it kills the bad. and the good. it's the route we've chosen to take.
then thursday he gave himself a marrow booster shot. the kids and i watched. matt said i couldn't administer it to him because i seemed a little too eager. whatever.
so we watched him pinch the little bit of fat he has in his belly with one hand, and hold the shot in the other.
and then we waited. he hesitated. and hesitated. we all laughed. finally he stuck the needle in and gave himself the injection. it really isn't a big deal - if you are used to doing that sort of thing. we're not. i think he'll get one more of these during the course of this treatment.
the benefit of the booster is that it will jump start his white blood cell count with the hopes that his numbers will be high enough for the next round of chemo at the appointed time. the downfall is that it makes his bones ache because the marrow is busy working and producing new cells. his back, the bones in his head, his armpits. everything. he aches. it's literally an ache from head to toe.
and he is very tired. he said he feels like he's 90. with all of the meds and bald head, his need for naps, i told him i think he is 90. we both chuckled. he teases me, i tease him. it's how we cope. we tease and we laugh.
he naps often. he gets very fatigued just walking across a street. it's sad, but it's ok. it's a season. levi mowed the lawn. i swept the pool, levi cleaned out the filters. we all have a new normal for this season. matt needs to rest. it's so hard for him. he doesn't sit still well.
matt has neuropathy, he has a constant ringing in his ears. he isn't nauseous - praise the Lord. his weight is exactly where it was when he was diagnosed almost 7 months ago. has it been 7 months really? sigh.
his weight has fluctuated throughout this whole thing, varying in total by 30 pounds from his highest weight after thanksgiving to his lowest after surgery. so it is an amazing feat to be at the exact weight. me? i'm up 10 pounds. because when matt feels like eating, we both eat. but enough about me.
we're told he may not get his taste or smell back. the surgeon said it in way that made us wonder if the olfactory gland was altered (or removed?) during surgery. maybe it's due to having cancer in the nasal area. maybe it's from chemo. who knows. but yesterday he told me lunch was the best meal he's eaten in a long time. i was so excited and asked what exactly he could taste. after thinking about it and taking another sip of his iced tea, he shook his head and told me nothing, it must have been the cold ice in the refreshing drink. so now we say, this is the best textured dinner ever. the kids have joined in. when dinner isn't amazing, i get this, "mom, you nailed the texture of those carrots!" and we laugh. it's a huge bummer matt can't taste or smell, but all things considered, it's ok. it has to be ok right? what option do we have?
we'll still pray for a miracle, the God who created us, who loves us, who died for us and rose for us, can certainly restore that which the doctors say is "probably not going to return." He defies the impossible. He accomplishes His will despite odds so that He would be glorified.
amen?
last week after chemo matt asked me to make cobbler, he was craving it. one thing i've learned is that during chemo, if he craves anything, we do what we can to get it because he doesn't crave much.
so when he mentioned a cobbler, i made one.
i put it in the oven and went outside. the berries started to burn against the hot pan, the cobbler wasn't burnt, just starting to smell that way. i ran in the house and as i was grabbing it out of the oven, i said, matt, you didn't smell that?!!! he shook his head. nope.
it hit me. how often have i taken something so simple as smell for granted.
the orange blossoms in spring.
a bbq in summer.
perfume.
puppy breathe.
a newborn baby.
fresh towels and sheets.
smoke.
sigh.
i called the surgeons office to see if the "seasoned eyes" looked over the latest MRI, there wasn't anything written in our file yet. so we wait.
i called the oncologist to schedule the next scan. i was told the PET/CT and MRI would be sometime in april. so we wait.
in two weeks, matt gets round 3 of chemo. then another booster shot.
then scans, and more appointments with all of the doctors and then more chemo.
then maybe we'll be done? i hesitate to say it because with every appointment things change. scans tell us the new course of treatment.
today i read in the one year bible, psalm 61. it was perfect.
it starts off with this,
hear my cry o God; listen to my prayer.
from the ends of the earth i call to You, i call as my heart grows faint; lead me to the rock that is higher than i.
it says, i will abide in Your tabernacle forever; i will trust in the shelter of Your wings.
i'm not sure who reads this. the purpose in writing was because so many people suggested i keep a log. i wanted to remember things. but i saw last week the blog is being hit from countries around the world - i'll admit, i had to look one country up. never heard of it.
so if you are reading this, thank you. it's so overwhelming to think that people are praying, people we don't know. or to think someone might even be encouraged by our story. cancer affects so many. we all have our own "cancer" - that thing that burdens us to the core. that situation that brings us to our knees. no matter what your "cancer" is, my prayer is that His Word would draw you in, it will be your strength, it will become the very air you breathe. if you are walking with us, reading this, growing with us, i'm encouraged. and really, i'd love to hear from you.
and of course, thank you for praying for my matt. we continue to trust Him as we walk this cancer road.
Wednesday, March 12, 2014
cancerschmancer - they held hands
today matt had his third (and thankfully final) treatment in this round.
we only have two rounds of three treatments left.
one in three weeks; another three weeks later.
we're counting down.
we could be done at the end of april. then again we might not be.
yesterday we decided to put a two-day iv in so matt wouldn't have to be poked today. it was uncomfortable, the nurse said we could take it out if we wanted. but he pressed on. he didn't sleep much, his hand ached and just knowing it was in kept him awake a majority of the night. but knowing there'd be no poke on the third day made it worth it.
when we got to chemo today, the iv wouldn't flush. fluid wouldn't go in, blood wouldn't come out. turns out the tube kinked inside matt's hand. it literally bent like a straw inside. so it was removed. two nurses, two blown veins later, they got a new iv in, he looks like a pin cushion once again. it was almost worse keeping the darn thing in over night. we decided that would be the last time we do it. he can't have a port because his treatments are not often enough and the maintenance is more work with more risk. so now we go back to three days of iv's: left hand, right hand, left arm in three weeks. it's a little like the hokey pokey - but i digress.
as we sat in the room today, there were no james', no energized, ready to chat patients. those around us had been there a few times. you recognize the seasoned patients because, well for one, they are bald, and for two, they just sit quietly and watch their tv screens waiting for the bags to empty and then they leave. most don't talk a lot. they typically don't feel well.
today matt took some work calls, i texted a few friends and took pictures of matt. and then we noticed movement entering from the other side of a room.
the oncologist led a couple in. they were in their 50's i'd guess. he showed them the room, the chairs, infusion area, the books, the water, the candy dish, the bathrooms. he introduced them to the nurses. the nurses said, don't worry, we'll take good care of you.
watching them, my heart broke. most likely, today, their worlds were rocked. chemo was their course of action. matt and i aren't sure who had cancer and who was the spouse, it's hard to tell when they both have hair. i've found one doesn't "look" like they have cancer right away.
he stared ahead. she cried.
they held hands.
i went back to that day.
my day.
the day we were introduced to the chemo room.
it was our course of action.
so many unknowns ahead. fear. worry. uncertainty.
i wanted to hug her. tell her i understood. boy did i understand.
i wanted to give her my hope pile and tell her to cling to it when her breath stops, her chest is tight and her knees go weak.
i wanted to tell her she'd make it. it will be hard, but they would be ok because the Word tells us that.
i wanted to tell her to dig deeper into the Word.
tell her He DOES give us more than we can handle so we'll cling to Him.
trust Him because He knows what is ahead.
our lives here on earth are temporary, Heaven is our goal.
listen to worship, close her eyes and live in that.
read scripture, post it everywhere. memorize it. recite it.
cling to every thing you know to be true.
take every thought captive.
fall on your face and pray.
hope. it's an anchor for our soul.
i wanted to tell her remedies for nausea and constipation.
warn her of neuropathy and tinnitus.
tell her taste and smell are affected by chemo.
they need to increase protein and vitamins.
do they know about night sweats?
insomnia?
what about being so exhausted you can't see straight?
accept help.
did they know her (or his) head would get cold when there's no hair?
their hands would be freezing. to the bone.
there's weight loss.
dehydration.
there were so many things i wanted to tell her.
but i didn't.
i just watched them.
the looked around. she let her tears flow.
they left. knowing they'd be back.
i'm not sure why i wasn't bold. maybe i just didn't want to interfere. interrupt their moment. maybe she wouldn't listen to me. but once they walked away, they haven't left my mind. i'm disappointed in myself. in my lack of boldness. i watch matt day after day; yet i sat back and watch.
next time. i hope there is a next time. yet i hope there isn't.
but for tonight, i can pray.
we only have two rounds of three treatments left.
one in three weeks; another three weeks later.
we're counting down.
we could be done at the end of april. then again we might not be.
yesterday we decided to put a two-day iv in so matt wouldn't have to be poked today. it was uncomfortable, the nurse said we could take it out if we wanted. but he pressed on. he didn't sleep much, his hand ached and just knowing it was in kept him awake a majority of the night. but knowing there'd be no poke on the third day made it worth it.
when we got to chemo today, the iv wouldn't flush. fluid wouldn't go in, blood wouldn't come out. turns out the tube kinked inside matt's hand. it literally bent like a straw inside. so it was removed. two nurses, two blown veins later, they got a new iv in, he looks like a pin cushion once again. it was almost worse keeping the darn thing in over night. we decided that would be the last time we do it. he can't have a port because his treatments are not often enough and the maintenance is more work with more risk. so now we go back to three days of iv's: left hand, right hand, left arm in three weeks. it's a little like the hokey pokey - but i digress.
as we sat in the room today, there were no james', no energized, ready to chat patients. those around us had been there a few times. you recognize the seasoned patients because, well for one, they are bald, and for two, they just sit quietly and watch their tv screens waiting for the bags to empty and then they leave. most don't talk a lot. they typically don't feel well.
today matt took some work calls, i texted a few friends and took pictures of matt. and then we noticed movement entering from the other side of a room.
the oncologist led a couple in. they were in their 50's i'd guess. he showed them the room, the chairs, infusion area, the books, the water, the candy dish, the bathrooms. he introduced them to the nurses. the nurses said, don't worry, we'll take good care of you.
watching them, my heart broke. most likely, today, their worlds were rocked. chemo was their course of action. matt and i aren't sure who had cancer and who was the spouse, it's hard to tell when they both have hair. i've found one doesn't "look" like they have cancer right away.
he stared ahead. she cried.
they held hands.
i went back to that day.
my day.
the day we were introduced to the chemo room.
it was our course of action.
so many unknowns ahead. fear. worry. uncertainty.
i wanted to hug her. tell her i understood. boy did i understand.
i wanted to give her my hope pile and tell her to cling to it when her breath stops, her chest is tight and her knees go weak.
i wanted to tell her she'd make it. it will be hard, but they would be ok because the Word tells us that.
i wanted to tell her to dig deeper into the Word.
tell her He DOES give us more than we can handle so we'll cling to Him.
trust Him because He knows what is ahead.
our lives here on earth are temporary, Heaven is our goal.
listen to worship, close her eyes and live in that.
read scripture, post it everywhere. memorize it. recite it.
cling to every thing you know to be true.
take every thought captive.
fall on your face and pray.
hope. it's an anchor for our soul.
i wanted to tell her remedies for nausea and constipation.
warn her of neuropathy and tinnitus.
tell her taste and smell are affected by chemo.
they need to increase protein and vitamins.
do they know about night sweats?
insomnia?
what about being so exhausted you can't see straight?
accept help.
did they know her (or his) head would get cold when there's no hair?
their hands would be freezing. to the bone.
there's weight loss.
dehydration.
there were so many things i wanted to tell her.
but i didn't.
i just watched them.
the looked around. she let her tears flow.
they left. knowing they'd be back.
i'm not sure why i wasn't bold. maybe i just didn't want to interfere. interrupt their moment. maybe she wouldn't listen to me. but once they walked away, they haven't left my mind. i'm disappointed in myself. in my lack of boldness. i watch matt day after day; yet i sat back and watch.
next time. i hope there is a next time. yet i hope there isn't.
but for tonight, i can pray.
Monday, March 10, 2014
cancerschmancer - chemo - it's worth it
this past saturday matt spent 3 hours at the lab waiting to get his blood work to see if he'd be cleared for chemo. he made the mistake of going on a saturday morning, or rather, i made the mistake of sending him. i thought based on the problem last week of a low white blood cell count, waiting as long as we could would be beneficial. won't do that again. from now on, he has a date with the lab on friday.
the verse that came to mind as i thought about this is 2 for 4:17, "for our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."
as matt would say, cancer is worth it.
this morning i called the oncologist's office and was told we were good to go - his white blood cell count was high enough and they'd see us at 1:30 for chemo.
our sweet friend carol prayed for matt today, she prayed he'd have opportunities in the chemo room. she also gave him a new beautiful bible.
when he took his chair in the room, we were a little disappointed to only see one other person in there.
the nurses discussed whether or not to put in a one day iv or a three day iv. either one would be ok. but the more chemo he has, the harder it is to find a good vein so by day 3 of treatment, veins collapse, blow and just plan disappear. christy, our nurse today got him the first time and said she was very pleased with how well hydrated he was. she put in a three day but said she could take it out if it wasn't comfortable. it would just save him from getting stuck a few more times in the next 2 days. as it turned out, we weren't thinking and had her put it in his right hand so after the appointment at matt's request, she took it out so it wouldn't bother him as he works, writes, etc. tomorrow she'll put one in his left hand and will leave it there through wednesday's appointment.
the room started filling and there was only one chair left empty, right next to us.
our oncologist came to see us. she told us she spoke with the surgeon and got an update on our appointment last week. she'll be scheduling the scans to take place soon.
she spoke with the oncologist at city of hope as well. he was pleased matt had surgery, she sent him all of the reports. she said he's very interested and remembers matt clearly. he wants to keep track of the progress. he recommends 4 chemo treatments. we thought we were having 3. that was a huge disappointment to matt. i could see it in his eyes immediately. he wants to be done.
i think it's like running a marathon. at mile 24, you know you are 2.2 miles from the finish line. you dig, you know you are almost done and then told you are actually running 30 miles, not 26.2. it is a little defeating. but you press on.
as matt started getting juiced up with bag one of four, we opened up and began to read in the one year bible. and wouldn't you know it, in walked james. you may remember him from a post a few weeks ago. that post is here: chemo room and james. he sat down in the chair next to us and asked how we've been. he remembered matt from a month ago and it was like two long time friends catching up. i was awkwardly sitting between them. he noticed our bibles and told us again how he loves the Word. he asked where we were reading today. soon he was leaning as far over in his chair as possible so i began to read through numbers a bit louder. when matt started reading mark i noticed james' eyes were shut. i thought maybe he fell asleep. soon he took the tv monitor and put it next to his ear but i noticed he didn't turn it on. he looked at me, smiled and shut his eyes again. as it turns out, he was listening and focusing on matt's reading and the tv was being used to block out the neighboring lady's voice.
when we finished reading psalms and proverbs, james told us various things that he loves in the Bible. matt asked if he ever read revelation. oh yes, that's his favorite. john, ah john, that's one of james' favorite disciples. the man in schooled in the word. makes me wonder if he really does go to the LDS church up the street. the men continued talking throughout the appointment.
today we learned james lives in an assisted living home. they took all of his things when he moved in. his rodeo trophies and coin collections. but it's ok he said, i forgive them, those are just things. he mentioned his daughter. he told us again about his belt buckle. matt told him our kids loved the story of the dog biting off his finger, he laughed. we learned he won a brand new car in 1969 on The Price is Right, that's back when bob barker was the host he told us. he couldn't remember what kind. but it was nice and it was a ford. he didn't spin the wheel good enough to get to the end, but he had fun that day, but the wait was 6 or 7 hours, he'll never forget that part.
soon james was done. the nurse said she called his ride and they would be there soon. as they were taking out his iv, he told matt he'd pray for him tonight. matt was still hooked up and asked james if he could pray for him before he left. james said "yes. please. and matt, could you pray i don't get sick from chemo?" he got into his motorized chair and made his way to matt. matt prayed. the two men shook hands. and james was gone.
neither matt nor i could speak, i had a lump in my throat, he had tears in his eyes. james hand was so cold. it was so boney. he's old and incredibly frail. he was facing cancer alone. a medical transport service got him to and from appointments. he went back to his place. alone. the Word of God brings him comfort at night, i understand that.
for the rest of our appointment i thought about james and our cancer journey. i thought about how i am or was, so anxious to get back to my cancer free life and i was counting down the appointments but the reality is, the Lord is giving matt more opportunities to talk with, read to and pray with James and others like him in the chemo room.
i watch matt and i'm in awe of his boldness and genuine care for others.
how i long to be like that. i don't want to be in such a hurry that i miss out on the "james" opportunities of life because it's the eternal things that matter. no matter how many chemos we have left, my prayer is that He'd be glorified and we'd never pass an opportunity to share Him, to pray with others.
the verse that came to mind as i thought about this is 2 for 4:17, "for our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."
as matt would say, cancer is worth it.
i'm not sure we'll see james again, he didn't look well. but i'm certain, after only two encounters with him, he'll be one i remember fondly when i reflect on our journey with cancer.
cancerschmancer - march 6 surgeon appt
ok, so here's the summary of the surgeon appointment last week at uci…
dr. b put the camera way (way!) up matt's nose and looked around, he said everything looks good, it's healing well. there's still some inflammation but overall it's good.
we saw that the brain is protected, the patch healed nicely, the optic nerve and general tumor area look good too. our surgeon met with the other 2 surgeons from UCI and it was decided based on surgery and the pathology report from surgery, there's no immediate need for another surgery; however it's all being closely watched since it's, yes he said it: rare and aggressive cancer.
he also sucked "stuff" out of matt's nasal/brain/tumor area and is sending that to culture to see if anything grows. and he's sending the latest MRI to radiology to have trained eyes look at it. if there is anything of concern, they have no problem taking matt back into OR to biopsy. he'd rather be overly cautions than miss anything. he said no news is good news, i said with this 'rare and aggressive cancer', a phone call regardless would be great. he said give him a few weeks….so we wait. have i mentioned how hard waiting is??!!
matt still can't smell or taste much and asked when those senses would return. the surgeon said they probably wouldn't. that was a real drag to hear, but all things considered we can't really complain right? at least he can't taste my kitchen experiments…i suppose there are benefits.
we'll see this surgeon every month for a year; he wants regular MRI's and PET/CT's and we're ok with that. and the next hurdle is getting matt's white cell count high enough for chemo. if all goes well, we'll start that up again monday. and more scans will take place later this month.
the verse the Lord gave me early on is this, 2 chron 20:17,
"you will not need to fight in this battle. position yourselves, stand still and see the salvation of the Lord, who is with you. do not fear or be dismayed; tomorrow go out against them, for the Lord is with you.” i don't often understand, i clearly don't stand still well. but i know it's His battle and i don't have to fear. because the end, no matter what, is His perfect will and He will use it for His glory. amen?
so thank you for reading this long update, thank you for the continued prayer and love as we walk this road.
dr. b put the camera way (way!) up matt's nose and looked around, he said everything looks good, it's healing well. there's still some inflammation but overall it's good.
we saw that the brain is protected, the patch healed nicely, the optic nerve and general tumor area look good too. our surgeon met with the other 2 surgeons from UCI and it was decided based on surgery and the pathology report from surgery, there's no immediate need for another surgery; however it's all being closely watched since it's, yes he said it: rare and aggressive cancer.
he also sucked "stuff" out of matt's nasal/brain/tumor area and is sending that to culture to see if anything grows. and he's sending the latest MRI to radiology to have trained eyes look at it. if there is anything of concern, they have no problem taking matt back into OR to biopsy. he'd rather be overly cautions than miss anything. he said no news is good news, i said with this 'rare and aggressive cancer', a phone call regardless would be great. he said give him a few weeks….so we wait. have i mentioned how hard waiting is??!!
matt still can't smell or taste much and asked when those senses would return. the surgeon said they probably wouldn't. that was a real drag to hear, but all things considered we can't really complain right? at least he can't taste my kitchen experiments…i suppose there are benefits.
we'll see this surgeon every month for a year; he wants regular MRI's and PET/CT's and we're ok with that. and the next hurdle is getting matt's white cell count high enough for chemo. if all goes well, we'll start that up again monday. and more scans will take place later this month.
the verse the Lord gave me early on is this, 2 chron 20:17,
"you will not need to fight in this battle. position yourselves, stand still and see the salvation of the Lord, who is with you. do not fear or be dismayed; tomorrow go out against them, for the Lord is with you.” i don't often understand, i clearly don't stand still well. but i know it's His battle and i don't have to fear. because the end, no matter what, is His perfect will and He will use it for His glory. amen?
so thank you for reading this long update, thank you for the continued prayer and love as we walk this road.
Monday, March 3, 2014
cancerschmancer - no chemo today
i'm a little frustrated. it happens. my goal is to write this entry without deleting or re-writing. it may not flow; it may not make sense; but i'm typing as it comes to mind so if you see mistakes, typos, a train of thought that goes way off the rails, bear (or bare?) with me.
today we went in to see the oncologist. 1pm was the appointment time, and chemo was slated to immediately follow. tomorrow we were scheduled to see the surgeon and then go to chemo and the final chemo of this round was supposed to be wednesday. everything was scheduled to flow; nothing would conflict and we were going to make the best use of our time.
i grocery shopped with chemo in mind.
soups
ginger ale
tea
applesauce
popcycles
all of the things matt can tolerate during chemo.
carpool was taken care of.
people were praying.
the house was clean, laundry done.
bring on chemo.
then we got to the oncologist and found out matt's blood count was too low. since this is the second time it's happened, they attribute it to the strong dose killing the white blood cells and his body isn't recovering quickly enough. sigh.
chemo would be postponed a week.
this just goes to show how true proverbs 16:9 is. "a man plans his journey but the Lord directs his steps."
the spiritual side of me says ok. this is God's plan. my head knows all of the things to say and believe.
the planner in me hates every bit of this. it's not working with what i had planned and arranged. type a and cancer do not co-exist. grrrrrr.
the wife in me hates it even more. i want matt better.
i'm done. there, i said it. i'm done.
done with chemo. done with cancer. done with doctors. done with scans, done with treatments, done with phone calls. done with waiting.
i'm done. the white flag of surrender, it's waving. i'm tapping out.
i hate seeing him sick. i hate seeing him tired. i hate that he hates it. i hate that he's so utterly miserable and there's not a single thing i can do about it.
hate. it's a strong word. i hate it.
sigh, you see, the longer we postpone the treatment; the longer it will be before he is better and feeling good again. and the longer before we can live normally again. how i long to be annoyed that he wakes up at 4am staring at me. how i long to try to keep up with him because he's always on the go. i long for him to tell me we need to go running. (though i secretly hate running!)
i long to look in his eyes and see that sparkle of orneriness.
to push my buttons as he used to say. i long for matt to feel good again.
don't get me wrong. i love seeing all that God has done in this. i love it when people i don't know come up and say they are praying for us. they heard about matt through a friend…or the prayer chain…or because their friend liked something on facebook and they saw it and now they are following our story. i love getting mail, gifts, watching needs being met before we know the need is there.
i love sharing how i got through a deep dark valley with someone and they tearfully smile and say they are encouraged. to be used in this is humbling and amazing. we know He doesn't waste a single thing. we know He wants our lights to shine. we know He works all things together for the good. we know He makes all things beautiful in His time. we know He is good. we know He is with us.
we know. but this is hard. it's a season He has called us to. for only He knows how long. it's a season we'll keep growing in. it's a season we'll look back on with completely thankfulness. i have no doubt.
but for now, we wait.
today i read psalm 46:10, "be still and know that i am God."
so tonight that's what i'll do. i'll be still.
and know He is God.
and i'll accompany this truth with a carton of ice cream and a spoon.
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