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.

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.

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.

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.

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.

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.

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.