Wednesday, December 29, 2010
Wednesday, December 29, 2010: 2011 Calendar
Well, better late than never! We sold quite a few calendars last year and I've had a few people ask if I was going to make one for next year...just been busier than normal lately. Anyway, the 2011 calendar is made up of more pictures from my different adventures. No frills this year - just the picture with some of Kristi's favorite verses she's used in our blog. Take a look...
Friday, December 24, 2010
Tuesday, December 21, 2010
Tuesday, December 21, 2010: One More Round
In my update on Sunday I typed the lyrics to the song One More Round. I love that song. I can physically be feeling horrible and yet when I listen to that song I feel tough and ready to get back in the ring. As soon as the song is done though I find myself cowering in the corner. I don't want to go "one more round". I don't want to be in the ring. I don't want to be in the building that the ring is in. I don't even want to be in the city of the building that the ring is in.
But, my ways are not His ways and my plans are not His plans. After talking to Dr. VanderWoude this morning we have decided to go "one more round". I will be starting chemo treatments again. Yuck. I am scheduled for a ct scan tomorrow morning and then we'll meet with Dr. VanderWoude next week to discuss the results of that scan and talk a little more about the chemo. I'm not going to start the treatments until next year. I sure wish that was as far away as it sounds but it's actually only two weeks away.
I'm still kinda numb. I knew this day was coming but now that it's here it stinks. On a positive note though now that we've switched doctors I can go to the chemo clinic in Holland.
I'm not sure how I will respond to this treatment (fatigue, nausea, pain, etc.) but I'm anticipating and want to be prepared for the worst. So many people have offered to help and I would like to put together a list so that when the needs arise we will have an organized list of who to call. If you would like to be on this list, please send us an email with how you would like to help (transporting kids, cleaning, running errands, baking, prepare freezer meals - whatever you enjoy doing most). Also, if there is a day of the week that works best for you let us know that as well. Thank you!!!!!!!!!!!
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. Isaiah 55:8
But, my ways are not His ways and my plans are not His plans. After talking to Dr. VanderWoude this morning we have decided to go "one more round". I will be starting chemo treatments again. Yuck. I am scheduled for a ct scan tomorrow morning and then we'll meet with Dr. VanderWoude next week to discuss the results of that scan and talk a little more about the chemo. I'm not going to start the treatments until next year. I sure wish that was as far away as it sounds but it's actually only two weeks away.
I'm still kinda numb. I knew this day was coming but now that it's here it stinks. On a positive note though now that we've switched doctors I can go to the chemo clinic in Holland.
I'm not sure how I will respond to this treatment (fatigue, nausea, pain, etc.) but I'm anticipating and want to be prepared for the worst. So many people have offered to help and I would like to put together a list so that when the needs arise we will have an organized list of who to call. If you would like to be on this list, please send us an email with how you would like to help (transporting kids, cleaning, running errands, baking, prepare freezer meals - whatever you enjoy doing most). Also, if there is a day of the week that works best for you let us know that as well. Thank you!!!!!!!!!!!
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. Isaiah 55:8
Sunday, December 19, 2010
Sunday, December 19, 2010: When The Going Gets Tough - The Tough Get Sick?
Wow, I just looked back and realized that I haven't done an update since November. Usually I like to update the blog - to help process what is going through my mind. The past few weeks the thought of sitting at a computer and typing has been too much for me.
I've had friends say they cringe when they see the update is in black because they know Brian typed it and he is the more realistic one - he says it like it is. Also, if he is updating it usually means I am not physically up to it. I wish I could say that since this update is by me it will be a happy, upbeat one but I'd be lying.
To be perfectly honest, right now I am scared. The physical pain is really taking a toll on me. The waiting is driving me bonkers. On top of this I came down with a flu bug on Wednesday night. Thursday I felt like a bomb had gone off inside my head. My only goal was to remain still as possible because I was afraid my head may actually explode.
Thankfully I felt much better on my birthday. It was the best birthday ever! If I typed everything that I did that day this post would go on forever so here's a quick glimpse: Emily slept in (yea!), a friend dropped off a tin of frosted Christmas cookies (yum!), went to see the movie Tangled (cute!) with my mom and Emily, went to lunch with my parents (more yum!), came home to discover that a friend had decorated our front porch with beautiful (BEAUTIFUL!) Christmas decorations and that Brian had come home early from work (woohoo!).
As if the day wasn't going good enough, someone from the Moms In Touch prayer group that has been praying for us stopped by with a huge bag of goodies for our family movie night. A red serving tray, huge popcorn bowl and smaller serving bowls, microwave popcorn, candy canes, pop, hot cocoa, boxes of movie theater style candy, chips and a couple dvd's are just some of the items that were in this bag.
There are days when I hate being "that family" and there are days when I am overwhelmed by the love that is shown to us because we are "that family". Friday I was overwhelmed by the kindness of our community of friends and family.
The best part of the day by far was cuddling up on the couches with lots of blankets, Brian, the kids and the dogs to watch a movie. Rosie was hiding in the other room - yes, she is still with us and available if anyone still needs a last minute Christmas gift! :)
Being crashed on the couch with the family and slipping away from reality was the best gift ever. I went between watching the movie and watching my family. I wish I could have made time stand still right then. As happy and content as I was though the thought "what if" kept pushing its way from the back of my mind. What if that was my last birthday? What if this is my last Christmas? Honestly though - that question goes for any of us. No one knows when their last day will be. It's just when you have cancer that question is constantly running through your mind. Every time you have a new pain you wonder. Every time the phone rings you wonder. Every single minute of every single day - I wonder.
Saturday I still felt pretty good but today I woke up with a horrible headache. I think it is just the end of whatever virus I had last week. My sinus' are clogged, my chest is full of guck, my nose is stuffed up and dripping, my eyes are watering . . . right now I would be the perfect picture for a Nyquil commercial. Well, the "before" picture anyway.
Tuesday morning we meet with Dr. VanderWoude to discuss two chemo treatment options. I can honestly say that I really, really, really do not want to start chemo again. I will though if after talking to the doctor we think that it is the right option for me. Right now I wish I could just wiggle my nose and make it all go away.
I'll end this post with a song that I have listened to so much lately that Emily has even started singing along! It's called One More Round by BarlowGirl (thanks Kathy!!). Here's the link and some of the lyrics:
http://www.youtube.com/watch?v=Gjt80iTmg5g
Round one wasn't what I thought it'd be
Round two I'm struggling to breathe
3, 4, 5, 6, 7 times I wondered why I stepped inside this ring
I may be knocked down and bruised
But I'm here to tell you
That I may be knocked down but not for the count
So take me one more round
I'll just keep fighting
One more round
You're messing me up but I'm still here
One more round I'll come out swinging
One more round
I'm telling you now I'm not gonna lose it
It's so hard to get up off the floor again
But I know that victory is when
I'm pushing through the pain that tries to feed me lies that I won't reach the end
I may be bloodied and so bruised
But I'm here to tell you
That I may be knocked down but not for the count
I am not defeated
Though you cannot see it
I have never won a battle on my own
I find strength in weakness
I find hope in believing
God is for me who can bring me down?
I've had friends say they cringe when they see the update is in black because they know Brian typed it and he is the more realistic one - he says it like it is. Also, if he is updating it usually means I am not physically up to it. I wish I could say that since this update is by me it will be a happy, upbeat one but I'd be lying.
To be perfectly honest, right now I am scared. The physical pain is really taking a toll on me. The waiting is driving me bonkers. On top of this I came down with a flu bug on Wednesday night. Thursday I felt like a bomb had gone off inside my head. My only goal was to remain still as possible because I was afraid my head may actually explode.
Thankfully I felt much better on my birthday. It was the best birthday ever! If I typed everything that I did that day this post would go on forever so here's a quick glimpse: Emily slept in (yea!), a friend dropped off a tin of frosted Christmas cookies (yum!), went to see the movie Tangled (cute!) with my mom and Emily, went to lunch with my parents (more yum!), came home to discover that a friend had decorated our front porch with beautiful (BEAUTIFUL!) Christmas decorations and that Brian had come home early from work (woohoo!).
As if the day wasn't going good enough, someone from the Moms In Touch prayer group that has been praying for us stopped by with a huge bag of goodies for our family movie night. A red serving tray, huge popcorn bowl and smaller serving bowls, microwave popcorn, candy canes, pop, hot cocoa, boxes of movie theater style candy, chips and a couple dvd's are just some of the items that were in this bag.
There are days when I hate being "that family" and there are days when I am overwhelmed by the love that is shown to us because we are "that family". Friday I was overwhelmed by the kindness of our community of friends and family.
The best part of the day by far was cuddling up on the couches with lots of blankets, Brian, the kids and the dogs to watch a movie. Rosie was hiding in the other room - yes, she is still with us and available if anyone still needs a last minute Christmas gift! :)
Being crashed on the couch with the family and slipping away from reality was the best gift ever. I went between watching the movie and watching my family. I wish I could have made time stand still right then. As happy and content as I was though the thought "what if" kept pushing its way from the back of my mind. What if that was my last birthday? What if this is my last Christmas? Honestly though - that question goes for any of us. No one knows when their last day will be. It's just when you have cancer that question is constantly running through your mind. Every time you have a new pain you wonder. Every time the phone rings you wonder. Every single minute of every single day - I wonder.
Saturday I still felt pretty good but today I woke up with a horrible headache. I think it is just the end of whatever virus I had last week. My sinus' are clogged, my chest is full of guck, my nose is stuffed up and dripping, my eyes are watering . . . right now I would be the perfect picture for a Nyquil commercial. Well, the "before" picture anyway.
Tuesday morning we meet with Dr. VanderWoude to discuss two chemo treatment options. I can honestly say that I really, really, really do not want to start chemo again. I will though if after talking to the doctor we think that it is the right option for me. Right now I wish I could just wiggle my nose and make it all go away.
I'll end this post with a song that I have listened to so much lately that Emily has even started singing along! It's called One More Round by BarlowGirl (thanks Kathy!!). Here's the link and some of the lyrics:
http://www.youtube.com/watch?v=Gjt80iTmg5g
Round one wasn't what I thought it'd be
Round two I'm struggling to breathe
3, 4, 5, 6, 7 times I wondered why I stepped inside this ring
I may be knocked down and bruised
But I'm here to tell you
That I may be knocked down but not for the count
So take me one more round
I'll just keep fighting
One more round
You're messing me up but I'm still here
One more round I'll come out swinging
One more round
I'm telling you now I'm not gonna lose it
It's so hard to get up off the floor again
But I know that victory is when
I'm pushing through the pain that tries to feed me lies that I won't reach the end
I may be bloodied and so bruised
But I'm here to tell you
That I may be knocked down but not for the count
I am not defeated
Though you cannot see it
I have never won a battle on my own
I find strength in weakness
I find hope in believing
God is for me who can bring me down?
Friday, December 17, 2010
Friday, December 17, 2010: Happy Birthday!
happy birthday to you,
(slightly off pitch)
happy birthday to you,
(a little more off pitch and slight squeal)
happy birthday to Kristi,
(going soprano with ear piercing squeal -
animals are scared)
happy birthday to you
(coming back down to human
sound levels but still way off key)
I love you!!
(slightly off pitch)
happy birthday to you,
(a little more off pitch and slight squeal)
happy birthday to Kristi,
(going soprano with ear piercing squeal -
animals are scared)
happy birthday to you
(coming back down to human
sound levels but still way off key)
I love you!!
ah yes, don't you miss the '90's?!
(and no, that ain't no stinkin mullet!)
Wednesday, December 15, 2010
Wednesday, December 15, 2010: Getting Tougher
Monday night Ashley was making plans for a sleep-over after ski club on Friday night. That means we would see her for 20 minutes in the morning, then not again until Saturday afternoon. Normally this would not be a big deal.
Friday is Kristi's birthday. Kristi was obviously hurt by this. But, I reminded Kristi that Ashley's a 13 year old girl and is in an 'it's all about me' phase. That mixed with hormones and whatever else...yikes. After dinner, I quietly motioned for Ashley to come upstairs with me. I was sitting and motioned for her to come sit next to me...she of course just rolled her eyes and stomped over...this after stomping up all the stairs to get to the bedroom. I'm sure Ashley was thinking "another lecture from dad".
Our conversation opens like this..."Ashley, I have to tell you something that is going to hurt. It's going to hurt a lot. And I'm going to be brutally honest." At this point I think she realized this was more than a "dumb lecture".
I continued on with "honey, you need to realize this may be mom's last birthday with us, and last Christmas with us." "What?! I thought you said 5 years!" "Well, the doctors told us '5 years after diagnosis' . Next month will be 4 years." Then the crying and sobbing. Needless to say, we'll be spending Friday night as a family watching a movie on the couch...just as Kristi envisioned.
Game time decisions. That's what we're faced with every day. 30 years from now would Ashley remember "the one ski club" she missed? But would she regret not spending enough time with her mom? Sometimes reality sucks, but sometimes we need a reality check.
I think we'll be seeing a difference in Ashley. I hope and pray that Ashley can maximize her time with Kristi moving forward. Truth is, we don't know how long it will be. But both Kristi and I realize that something not good is happening inside her. She's pretty much in constant discomfort these days. Today she added nausea.
We meet with her new doctor next Tuesday to discuss treatment options. We also got the name of the pain management place that we'll be calling.
We had my work Christmas party tonight including spouses. You know, the one that all the spouses dread going to because "I don't know anyone". Yup, that one. Kristi couldn't go of course. Before I got home from work she had just taken a Vicodin and she was feeling nauseous so I went solo. I have to admit, although there was plenty of laughing at the expense of a few (and not me for once), my thoughts were at home. I didn't stick around much after dinner because I envisioned Kristi at home being miserable. I also have to admit it was tough seeing all the couples and realizing...
All in a day.
Friday is Kristi's birthday. Kristi was obviously hurt by this. But, I reminded Kristi that Ashley's a 13 year old girl and is in an 'it's all about me' phase. That mixed with hormones and whatever else...yikes. After dinner, I quietly motioned for Ashley to come upstairs with me. I was sitting and motioned for her to come sit next to me...she of course just rolled her eyes and stomped over...this after stomping up all the stairs to get to the bedroom. I'm sure Ashley was thinking "another lecture from dad".
Our conversation opens like this..."Ashley, I have to tell you something that is going to hurt. It's going to hurt a lot. And I'm going to be brutally honest." At this point I think she realized this was more than a "dumb lecture".
I continued on with "honey, you need to realize this may be mom's last birthday with us, and last Christmas with us." "What?! I thought you said 5 years!" "Well, the doctors told us '5 years after diagnosis' . Next month will be 4 years." Then the crying and sobbing. Needless to say, we'll be spending Friday night as a family watching a movie on the couch...just as Kristi envisioned.
Game time decisions. That's what we're faced with every day. 30 years from now would Ashley remember "the one ski club" she missed? But would she regret not spending enough time with her mom? Sometimes reality sucks, but sometimes we need a reality check.
I think we'll be seeing a difference in Ashley. I hope and pray that Ashley can maximize her time with Kristi moving forward. Truth is, we don't know how long it will be. But both Kristi and I realize that something not good is happening inside her. She's pretty much in constant discomfort these days. Today she added nausea.
We meet with her new doctor next Tuesday to discuss treatment options. We also got the name of the pain management place that we'll be calling.
We had my work Christmas party tonight including spouses. You know, the one that all the spouses dread going to because "I don't know anyone". Yup, that one. Kristi couldn't go of course. Before I got home from work she had just taken a Vicodin and she was feeling nauseous so I went solo. I have to admit, although there was plenty of laughing at the expense of a few (and not me for once), my thoughts were at home. I didn't stick around much after dinner because I envisioned Kristi at home being miserable. I also have to admit it was tough seeing all the couples and realizing...
All in a day.
Sunday, December 12, 2010
Sunday, December 12, 2010: ?
Wasn't sure what to title tonight's entry so I felt ? was good enough. Kinda at a loss for words these days. Kristi's pretty much in constant pain, taking her Vicodin way more than she wants. But the pain in her back is extremely uncomfortable. So we go into "pain management". So I type fragments for sentences. Why? I don't know. It's the creative style coming out in me I guess.
Random thoughts.
Well, here's a not so random thought...Kristi had blood work done last week for genetic testing and a CA125 check. We decided to have genetic testing done to see if Kristi is a carrier of a specific gene for ovarian cancer or if her cancer was just a random occurrence. We won't have those results for about 3 weeks.
We did get her CA125 results last week, however. No surprise: it went up. She was at 551 and she now is at 701. We expect to hear from her new doctor this week and what the new treatment plan is. In the meantime she just has to bear the back pain. Actually, we are going to look into a pain management specialist to see if there is anything else we can try - and yes, we did ask about medical marijuana...jokingly of course. Because it was for me. Actually, I asked. Jokingly, of course. It was voted "in" in the state of Michigan but it's still a federal crime. Don't worry, mom, I wouldn't inhale. We're just not from that generation. Nope, our generation skipped over the pot and went directly to crack. Way quicker. I heard.
But anyway, sometimes my thoughts wander. I hear there's a pill for that. Well, prayers for Kristi's back pain and bloating, her emotional and physical health, our family's emotional health and strength for all of us. I described Kristi and I to a friend recently as we are both physically and mentally exhausted these days. So if we walk right by you in church or where ever don't take it personally. Most days we're like walking zombies. The 4 year battle is taking its toll. Needless to say, we're looking forward to a nice and quiet Christmas break to recharge.
Thanks for your never-ending prayers!
Random thoughts.
Well, here's a not so random thought...Kristi had blood work done last week for genetic testing and a CA125 check. We decided to have genetic testing done to see if Kristi is a carrier of a specific gene for ovarian cancer or if her cancer was just a random occurrence. We won't have those results for about 3 weeks.
We did get her CA125 results last week, however. No surprise: it went up. She was at 551 and she now is at 701. We expect to hear from her new doctor this week and what the new treatment plan is. In the meantime she just has to bear the back pain. Actually, we are going to look into a pain management specialist to see if there is anything else we can try - and yes, we did ask about medical marijuana...jokingly of course. Because it was for me. Actually, I asked. Jokingly, of course. It was voted "in" in the state of Michigan but it's still a federal crime. Don't worry, mom, I wouldn't inhale. We're just not from that generation. Nope, our generation skipped over the pot and went directly to crack. Way quicker. I heard.
But anyway, sometimes my thoughts wander. I hear there's a pill for that. Well, prayers for Kristi's back pain and bloating, her emotional and physical health, our family's emotional health and strength for all of us. I described Kristi and I to a friend recently as we are both physically and mentally exhausted these days. So if we walk right by you in church or where ever don't take it personally. Most days we're like walking zombies. The 4 year battle is taking its toll. Needless to say, we're looking forward to a nice and quiet Christmas break to recharge.
Thanks for your never-ending prayers!
Tuesday, December 7, 2010
Tuesday, December 7, 2010: Pain
yesterday another bad day for kristi. I think that's 3 or 4 in a row. she had been exchanging 2 good, 2 bad, 2 good, 2 bad. she's been stuck on the bad. I hate seeing her in pain. we can send people into outer space but we can't cure a disease. we can create cars that drive themselves but we can't cure cancer. technology seems to win when it comes to research dollars. that doesn't seem right, fair, humane, ...
the nights are getting longer and the days shorter. literally and figuratively.
the nights are getting longer and the days shorter. literally and figuratively.
Saturday, November 27, 2010
Saturday, November 27, 2010: Never Give Up
I have been struggling a lot lately with "why". Why is there so much evil in this world? Why does it seem like everywhere I turn there is pain and suffering? Why should I bother trying to do good when I know that something bad is just around the corner waiting to remind me that I can't win? I have had a lot of conversations with God about this. Well, one-sided conversations at least.
Last night after exhausting myself with all the "why" questions I was finally quiet for a minute. It was then that I heard "never give up on doing what is right". Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9
As I was searching for verses about not giving up I found some that really hit home . . . here are a few of them (taken from The Message's translation of 1 Timothy 4:1-16)
The Spirit makes it clear that as time goes on, some are going to give up on the faith and chase after demonic illusions put forth by professional liars. These liars have lied so well and for so long that they've lost their capacity for truth.
You've been raised on the Message of the faith and have followed sound teaching. Exercise daily in God—no spiritual flabbiness, please! Workouts in the gymnasium are useful, but a disciplined life in God is far more so, making you fit both today and forever.
Teach believers with your life: by word, by demeanor, by love, by faith, by integrity. Stay at your post reading Scripture, giving counsel, teaching. Cultivate these things. Immerse yourself in them. The people will all see you mature right before their eyes! Keep a firm grasp on both your character and your teaching. Don't be diverted. Just keep at it.
I have never given up on my faith in God - that He is real, that He loves me, that He is in control. I was giving up on something though. Maybe I figured the final battle has already been won so why bother with the wars along the way? I was listening to the lies that were going through my head like "don't bother - you can help one person but you can't help them all - you won't even make a difference" and "just stay down - it won't hurt as much next time you fall because you're already halfway there".
There is some truth inside those lies though. It's true that I can't help everyone . . . . but I can make a difference. It is also true that it won't hurt as much to fall back into the pit if I just stay there but if I am being honest - most of God's teaching moments happen while I am falling.
I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Psalm 40:1-3
Last night after exhausting myself with all the "why" questions I was finally quiet for a minute. It was then that I heard "never give up on doing what is right". Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9
As I was searching for verses about not giving up I found some that really hit home . . . here are a few of them (taken from The Message's translation of 1 Timothy 4:1-16)
The Spirit makes it clear that as time goes on, some are going to give up on the faith and chase after demonic illusions put forth by professional liars. These liars have lied so well and for so long that they've lost their capacity for truth.
You've been raised on the Message of the faith and have followed sound teaching. Exercise daily in God—no spiritual flabbiness, please! Workouts in the gymnasium are useful, but a disciplined life in God is far more so, making you fit both today and forever.
Teach believers with your life: by word, by demeanor, by love, by faith, by integrity. Stay at your post reading Scripture, giving counsel, teaching. Cultivate these things. Immerse yourself in them. The people will all see you mature right before their eyes! Keep a firm grasp on both your character and your teaching. Don't be diverted. Just keep at it.
I have never given up on my faith in God - that He is real, that He loves me, that He is in control. I was giving up on something though. Maybe I figured the final battle has already been won so why bother with the wars along the way? I was listening to the lies that were going through my head like "don't bother - you can help one person but you can't help them all - you won't even make a difference" and "just stay down - it won't hurt as much next time you fall because you're already halfway there".
There is some truth inside those lies though. It's true that I can't help everyone . . . . but I can make a difference. It is also true that it won't hurt as much to fall back into the pit if I just stay there but if I am being honest - most of God's teaching moments happen while I am falling.
I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Psalm 40:1-3
Wednesday, November 24, 2010
Wednesday, November 24, 2010: Message to Satan: BACK OFF!!!!!!!!!
I have been in a dark place. I have been trying desperately to find good in this life but evil kept triumphing. I would find a glimmer of hope only to have it encompassed by darkness. I was so tired of getting up only to fall back down again. So I decided it was easier to just stay down. Why get up when you know that you will inevitably fall back down again? If I stayed down I was preventing the sting of the next fall. Right? Um, nope.
The sting of that next fall was always there with me. What I was preventing were the feelings of joy, peace and of hope. I was letting the enemy win. I'm still scared to get back up and in the ring. I can feel it even as I type this post. The devil is lurking around me like a lion waiting to pounce. His eyes are open - never blinking. He is stalking around - just waiting for that chance to pounce on me - to pin me down and say - "gotcha again". He's waiting for me to give up. Not this time.
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. Psalm 61:1-2
The sting of that next fall was always there with me. What I was preventing were the feelings of joy, peace and of hope. I was letting the enemy win. I'm still scared to get back up and in the ring. I can feel it even as I type this post. The devil is lurking around me like a lion waiting to pounce. His eyes are open - never blinking. He is stalking around - just waiting for that chance to pounce on me - to pin me down and say - "gotcha again". He's waiting for me to give up. Not this time.
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. Psalm 61:1-2
Monday, November 22, 2010
Monday, November 22, 2010: Light Up The Sky
Today was hard. Coming back to reality after spending time in denial is always hard. And the longer I spend in denial the harder reality hits. It wasn't a slap in the face kind of hit though. It was more like stepping in quicksand. I felt trapped. Suffocated. Unable to muddle through the muck.
The silver lining around this dark cloud is the way friends and family take care of us. People bring us meals, clean our house, watch the kids and so much more. It is bittersweet though. It is awesome the way people jump into action and help us but on the flip side I don't like the reason that we need help. I don't like thinking about the cancer. I don't like the constant back pain and the fact that I tire out so easily. I don't like thinking about the "what-ifs". The top of my "don't like" list though is seeing the fear in my families eyes. Imagining the thoughts that are going through their minds.
This life can be so hard. It seems like everywhere I look there is pain. Life-threatening illnesses whether ongoing or recently diagnosed. Grieving of loved ones that have passed away. Heartache from missing that special someone that is serving our country and protecting our freedom. Fear of the unknown - of what our future holds. Right now this world just feels dark to me. I am trying to hold on to the positives and to count my blessings (although so often I find myself counting the trials). I am praying that like the words of the song - God will "light up the sky".
Light, light, light up the sky
Light up the sky to show me You are with me
I, I, I can’t deny
Oh I can’t deny that You are right here with me
You’ve opened my eyes so I can see You all around me
Light, light, light up the sky
Light up the sky to show me You are with me
(Reading the lyrics to this song don't really do it justice - check out the video and listen to the words . . . if the link doesn't work, the song is called Light Up The Sky by The Afters.)
http://www.godtube.com/watch/?v=7GKGW7NX
The silver lining around this dark cloud is the way friends and family take care of us. People bring us meals, clean our house, watch the kids and so much more. It is bittersweet though. It is awesome the way people jump into action and help us but on the flip side I don't like the reason that we need help. I don't like thinking about the cancer. I don't like the constant back pain and the fact that I tire out so easily. I don't like thinking about the "what-ifs". The top of my "don't like" list though is seeing the fear in my families eyes. Imagining the thoughts that are going through their minds.
This life can be so hard. It seems like everywhere I look there is pain. Life-threatening illnesses whether ongoing or recently diagnosed. Grieving of loved ones that have passed away. Heartache from missing that special someone that is serving our country and protecting our freedom. Fear of the unknown - of what our future holds. Right now this world just feels dark to me. I am trying to hold on to the positives and to count my blessings (although so often I find myself counting the trials). I am praying that like the words of the song - God will "light up the sky".
Light, light, light up the sky
Light up the sky to show me You are with me
I, I, I can’t deny
Oh I can’t deny that You are right here with me
You’ve opened my eyes so I can see You all around me
Light, light, light up the sky
Light up the sky to show me You are with me
(Reading the lyrics to this song don't really do it justice - check out the video and listen to the words . . . if the link doesn't work, the song is called Light Up The Sky by The Afters.)
http://www.godtube.com/watch/?v=7GKGW7NX
Sunday, November 21, 2010
Sunday, November 21, 2010: My Happy Place
Looming ahead of me is another week. There will most likely be phone calls from doctors and decisions will need to be made - new steps will need to be taken - new territory will need to be entered. The cancer is bad. I know that. But I can't dwell on it or I will go crazy.
Right now I have two children that are driving me crazy with non-cancer related issues! They are actually issues so small that they shouldn't even be considered issues!!! I also have a teenager. Thankfully my teenager has a good head on her shoulders, a deep faith, good role models and awesome parents (well, her dad is pretty awesome anyway!). Despite all she has going for her though the teenage road is hard. Very hard. There are so many things I wish I could just tell her to do so she can avoid the heartbreak that I went through and avoid the mistakes that I made. Even if I could get her to make the choices I want for her I can't make the kids around her do the same. My parents watched me trudge through adolescence and now it is my turn to watch my children do the same. Add the heartaches of parenting to the fear of cancer unknowns and it just becomes too much to bear.
Brian came home today after being gone hunting for a few days. It sounds like he had a really good time away with his friend but I could already see it on his face when he came home. He had the post-vacation blues or better put - the back to reality blues. When I asked him if that was what was wrong he said yes. I informed him that today was Sunday and we are still in denial mode here so he needed to leave his "reality" parked at the front door and that was all the further it was allowed. It can wait there until Monday morning. I got a little smile out of him at least :)
Right outside our house lies cancer fears, parenting concerns, only 34 more days left until Christmas shopping stress, and much, much more. Inside our home right now we are in our happy place. There is no cancer here. My back pain? No, that's not the tumors - that is from this new weight lifting class I started last week. Yup, bench pressed 300 pounds the other day!!
Tonight I am going to wrap my family up in bubble wrap. We are going to enjoy each other, we will not fight (okay, so this will be a stretch), we will watch mindless silly movies or play board games. We will have tickle fights and laugh so hard that we can't breathe. We will pretend that cancer does not exist. We will go our our happy place. Denial. I know we can't stay here forever but for right now that's where I want to be.
Right now I have two children that are driving me crazy with non-cancer related issues! They are actually issues so small that they shouldn't even be considered issues!!! I also have a teenager. Thankfully my teenager has a good head on her shoulders, a deep faith, good role models and awesome parents (well, her dad is pretty awesome anyway!). Despite all she has going for her though the teenage road is hard. Very hard. There are so many things I wish I could just tell her to do so she can avoid the heartbreak that I went through and avoid the mistakes that I made. Even if I could get her to make the choices I want for her I can't make the kids around her do the same. My parents watched me trudge through adolescence and now it is my turn to watch my children do the same. Add the heartaches of parenting to the fear of cancer unknowns and it just becomes too much to bear.
Brian came home today after being gone hunting for a few days. It sounds like he had a really good time away with his friend but I could already see it on his face when he came home. He had the post-vacation blues or better put - the back to reality blues. When I asked him if that was what was wrong he said yes. I informed him that today was Sunday and we are still in denial mode here so he needed to leave his "reality" parked at the front door and that was all the further it was allowed. It can wait there until Monday morning. I got a little smile out of him at least :)
Right outside our house lies cancer fears, parenting concerns, only 34 more days left until Christmas shopping stress, and much, much more. Inside our home right now we are in our happy place. There is no cancer here. My back pain? No, that's not the tumors - that is from this new weight lifting class I started last week. Yup, bench pressed 300 pounds the other day!!
Tonight I am going to wrap my family up in bubble wrap. We are going to enjoy each other, we will not fight (okay, so this will be a stretch), we will watch mindless silly movies or play board games. We will have tickle fights and laugh so hard that we can't breathe. We will pretend that cancer does not exist. We will go our our happy place. Denial. I know we can't stay here forever but for right now that's where I want to be.
Wednesday, November 17, 2010
Wednesday, November 17, 2010: Grumpy
Right now I am grumpy. Mad. Angry. Just plain ticked off. Why you may ask? I don't know. It was a great day. I visited with a few friends (actually got to sit and visit without any children saying "mom, mom, mom, mom, mom" - like I didn't hear them the first time they said my name). I love my children but seriously- I heard you the first time! I enjoyed a yummy lunch (that I didn't even have to make). I got my hair cut (my hair is finally growing in thicker!). And we had a very yummy supper brought to us tonight.
Yesterday afternoon Brian and I met with my new oncologist. I am now an official patient of Dr. Amy Vanderwoude from the Cancer and Hematology Center in Holland. She will be talking to Dr. Downey and getting the rest of my chart from him (she only had the notes through 2008 and I had to laugh when she asked if I had been receiving any chemo treatment since then - um yup, just a little). After she talks to Dr. Downey and reviews the rest of my chart we will be meeting with her again to talk about where to go from here. I really liked her and feel good about this transition.
Despite all this I'm grumpy. My back hurts off and on. Mostly on. Once in a while my fingertips go completely numb and it freaks me out. I hate the way the pain messes with my mind. I hate how quickly my mood can change. I hate, hate, hate, hate, hate, hate, hate, did I mention hate? I hate cancer. I'm trying to get out of this grumpy mood but not having much luck.
One of my brother's poems keeps running through my head . . . . it's called Up and Down Frowns.
the thoughts in my mind go up and down
not sure what to do i'm stuck with a frown.
i say to myself it's a real bad day
but only if i choose to make it that way.
Many of you probably already know this poem is from his book The Tomato Collection. For those of you that didn't know that - now you do. For those of you that have no idea what I am talking about check out his website . . . . it's www.tomatocollection.com.
So to sum up - it was a good day, I'm in a grumpy mood, my brother is pretty cool :)
Yesterday afternoon Brian and I met with my new oncologist. I am now an official patient of Dr. Amy Vanderwoude from the Cancer and Hematology Center in Holland. She will be talking to Dr. Downey and getting the rest of my chart from him (she only had the notes through 2008 and I had to laugh when she asked if I had been receiving any chemo treatment since then - um yup, just a little). After she talks to Dr. Downey and reviews the rest of my chart we will be meeting with her again to talk about where to go from here. I really liked her and feel good about this transition.
Despite all this I'm grumpy. My back hurts off and on. Mostly on. Once in a while my fingertips go completely numb and it freaks me out. I hate the way the pain messes with my mind. I hate how quickly my mood can change. I hate, hate, hate, hate, hate, hate, hate, did I mention hate? I hate cancer. I'm trying to get out of this grumpy mood but not having much luck.
One of my brother's poems keeps running through my head . . . . it's called Up and Down Frowns.
the thoughts in my mind go up and down
not sure what to do i'm stuck with a frown.
i say to myself it's a real bad day
but only if i choose to make it that way.
Many of you probably already know this poem is from his book The Tomato Collection. For those of you that didn't know that - now you do. For those of you that have no idea what I am talking about check out his website . . . . it's www.tomatocollection.com.
So to sum up - it was a good day, I'm in a grumpy mood, my brother is pretty cool :)
Sunday, November 14, 2010
Sunday, November 14, 2010: Tired
Well, today was better than yesterday but it wasn't great. Leaving church this morning Kristi was in so much pain she had to hold on to me all the way to the van. Fortunately, by mid to late afternoon most of the pain was gone. We had a good night tonight visiting with our life group.
Specific prayer request would be for our emotional well being. We are both really tired. Physically and mentally. When I listened to the sermon this morning about Paul and the years of suffering and sacrifice he made, and think about Moses leading the Israelites through the desert for 40 years I just think, wow, that's a really long time. But 4 years of battling cancer is also a long time. Some days I do get angry. Jealous at everyone else who is living a "normal" life. Why can't we have normal? Enough is enough.
"(13)Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, (14) I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." - Philippians 3:13-14
Well, it's late, and like I said, I'm tired. I need sleep so I can keep pressing on. Maybe when I wake up tomorrow morning this will all just be a really bad dream. I can hope...
Specific prayer request would be for our emotional well being. We are both really tired. Physically and mentally. When I listened to the sermon this morning about Paul and the years of suffering and sacrifice he made, and think about Moses leading the Israelites through the desert for 40 years I just think, wow, that's a really long time. But 4 years of battling cancer is also a long time. Some days I do get angry. Jealous at everyone else who is living a "normal" life. Why can't we have normal? Enough is enough.
"(13)Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, (14) I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." - Philippians 3:13-14
Well, it's late, and like I said, I'm tired. I need sleep so I can keep pressing on. Maybe when I wake up tomorrow morning this will all just be a really bad dream. I can hope...
Saturday, November 13, 2010
Saturday, November 13, 2010: Reaching Around the Globe
Kristi and I always knew that people from all over the world were reading our blog, but we had no idea we were reaching this far! The new counter I have installed records the countries, states and cities people visit from. When I looked at it tonight and showed it to Kristi we were blown away. Humbled. Honored. Privileged. Those are just a few of the adjectives we could use. Here is a snapshot of the past 5 days:
In the past 5 days, we've had 1,677 hits by visitors from 4 continents, 31 countries, 85 states or regions, 278 cities and our blog has been translated into 18 different languages. During this 5 days we had only a 37.8% bounce rate; that means people are hitting the blog and staying. I was showing Kristi this and we kind of freaked out. Yikes, talk about some pressure. :)
Anyway, Kristi's pain was much better today but most of the day she was kind of out of it. She took half a Vicadin this morning and slipped into "silly land". Picture this: Kristi sitting on her hands and knees on the couch. Butt facing the room and her head stuck in the cushions. Singing "Jimmy Crack Corn and I Don't Care". I was telling my sister-in-law, Lori, if she didn't have cancer it would have been quite funny. Well, it was funny, I have to admit. Ashley and I enjoyed the show. After she came down from the Vicadin high she was left with drowsiness and fatigue. No more Vicadin unless the pain is unbearable. We'll see how tomorrow goes but today was an improvement over yesterday at least.
Thanks for your continued prayers...from all over the world!
In my defense - I was curled up in like that because I was in pain and was trying to find a position that would help lessen the pain. As far as the singing . . . never happened . . . . don't know what you are talking about . . . . (note to self - hide the video camera next time I take Vicodin!!)
In my defense - I was curled up in like that because I was in pain and was trying to find a position that would help lessen the pain. As far as the singing . . . never happened . . . . don't know what you are talking about . . . . (note to self - hide the video camera next time I take Vicodin!!)
Friday, November 12, 2010
Friday, November 12, 2010: Pain in the Back
We need prayers tonight for Kristi. The pain in her lower back is increasing in intensity. This morning was nearly unbearable. After she saw her kinesiologist she felt much better, but still had a lot of pain. I called Dr. Downey's nurse, Amber, and she gave me some directions. Basically, Kristi has not been wanting to take any pain meds because of the effects they have on her...so she just grins and bears it. Amber said that's not a good idea...better to stay ahead of the pain, not play catch up. So we may have a few bad days as we try to catch up to manage her discomfort. So, one dose of Vicadin and Adivan and off to bed she went...about 4:00 this afternoon. This is going to be a rough few days. Please pray for patience and sanity for all of us.
Thanks!
Thanks!
Tuesday, November 9, 2010
Tuesday, November 9, 2010: Big Eyes
Kristi and I have had a chance to digest the information we received last Thursday from the radiologist. Like Kristi said, the news wasn't what we were expecting (or wanted) but now that we have the info it feels good to be informed. What is really cool is that we actually have a copy of the CT scan Kristi had done in October - if there's nothing good on TV I can sit at my computer and look at Kristi's insides. Very cool stuff.
As far as the appointment last week, we sat with this doctor (in his own office) for an hour going over the CT scan in detail. Up to this point we have never seen any of this. This doctor made sure that we understood everything we were looking at. Like I said, we didn't like what we saw or what he was saying but for some strange reason we just left there feeling good because now we actually had some data to make a good decision.
Here's what we were looking at. This first picture is of a lump the doctor found in her neck during his exam. This is probably still the cancerous lymph node she had before but he can't know for sure without doing surgery. But, since it hasn't grown he said if it was the cancerous lymph node that it is dormant - but something to watch.
As far as the appointment last week, we sat with this doctor (in his own office) for an hour going over the CT scan in detail. Up to this point we have never seen any of this. This doctor made sure that we understood everything we were looking at. Like I said, we didn't like what we saw or what he was saying but for some strange reason we just left there feeling good because now we actually had some data to make a good decision.
Here's what we were looking at. This first picture is of a lump the doctor found in her neck during his exam. This is probably still the cancerous lymph node she had before but he can't know for sure without doing surgery. But, since it hasn't grown he said if it was the cancerous lymph node that it is dormant - but something to watch.
The next picture is a cross section through her abdomen. I have added some descriptions of some of the organs. What we understood from Dr. Downey was that Kristi had two small tumors on each side of her kidneys. What she actually has is much more. In addition to the tumors, the entire area I have circled in blue are cancerous lymph nodes. These lymph nodes are dividing and reproducing at a faster rate than normal cells. Basically, they'll take over if not stopped. None of that gray matter should be in that blue circle - it should be solid black. Black indicates "nothing" or "air space". There should be nothing here. Instead it's full of cancerous lymph nodes...so many that they have pushed her thoracic aorta away from her spine. The thoracic aorta should be tight against her spine in this area. This is probably why she has the back pain. That infected region (the blue circle) runs probably 6-8 inches up and down in her abdominal area. As far as radiation...not an option. Radiation works on straight paths. They can't get to the infected area from the back because of the spine. Coming in from the front they would have to blast all the organs in front to get to the infected area. Sometimes this can work, but in Kristi's case it is too risky and the side effects wouldn't be tolerable. And, he said even after 5 weeks of treatment he couldn't guarantee he got it all. One other disadvantage of radiation is that it treats locally. So if Kristi does have other areas of her body infected, like her neck, radiation on her belly would do nothing for that.
So, with having all of that information the decision was "easier". Is starting chemo ever an "easy" decision? Of course not. But, we were convinced radiation was not the way to go. And this doctor agreed.
As for Dr. Downey...we are looking at moving Kristi's treatment to the Holland Oncologist Clinic. We have heard great things about their two doctors from other friends with cancer. We are trying to get in there to talk to the doctors to "interview" them. We are waiting for a call back.
This picture here has no relevance whatsoever. I just thought it was really cool. I was having fun playing with the CT scan program and running up and down her body. The eyeballs freaked me out.
So, that's about it. Just another day Living! with cancer. Please pray that the Holland clinic is accepting new patients and we can get an appointment to talk to the doctors. Please pray for patience and guidance over these next few days.
Thanks!
Sunday, November 7, 2010
Thursday, November 4, 2010
Thursday, November 4, 2010: More Decisions
It's late, it's been a long day and I'm tired so this will be short & sweet. Our appointment today went really good. Dr. Edlund spent a long time with us, gave us a much better understanding of what is going on and answered all our questions. Even though I still have cancer and it still is bad we walked out of the office feeling like we have a better grasp of things. We have more decisions to make but feel better prepared to make them. In a nutshell - radiation it out and chemo is in. I will post more details later after Brian and I have had a chance to talk things over more.
Wednesday, November 3, 2010
Wednesday, November 3, 2010: A Fine Line
There is a very fine line between reality and denial. It is so small that it is almost impossible to stay on it. On one side of the line you have denial. It's a happy place to be. There is no cancer, no fear, no doubts and everything is "just fine". I like spending time in denial.
Reality though ~ that's not such a great place to be. I try not to visit there very often. Cancer has a permanent residence in reality. It's a frightening place to be - there is a looming sense of fear and and hopelessness in there.
I much prefer to spend my time in denial but unfortunately reality always finds the back door and sneaks up on me. After I have been in reality too long I find myself desperately looking for the path back to denial. Occasionally I have been on the thin line between the two places. I stand very still with my arms stretched out to keep my balance. I look at reality long enough to process things that need to be dealt with. Then I take a quick glimpse into denial simply to keep my sanity ~ to keep me from falling into a great big deep pit of darkness.
I am not able to stay in reality very long. It's too hard. And I don't think that is where God wants me to dwell either. I need to go there once in a while because life doesn't stop. Life happens and we have to deal with it and move on. I think God gave us the gift of denial to help us cope. This gift can be taken too far though and if we stay in denial too long it can become extremely difficult to leave. The issues that are in reality continue to grow and they need to be processed.
We are in the state of processing things right now. Today's appointment with Dr. Downey went better than I expected but it wasn't at all what I was expecting. My CA125 went up to 551. That didn't really surprise or bother me. My ct scan showed that the cancer is spreading through my lymph nodes so the fact that my CA125 was going down earlier didn't make a difference. The positive note from the scan was that all my organs and bones appear to be fine. The cancer just really seems to like my lymph nodes. It is still fairly confined to my abdominal area.
Tomorrow we will be meeting with Dr. Edlund. This is the doctor from LAROC that I saw at the beginning of this year when I had radiation on my neck. Right now I am still having a lot of back pain and Dr. Downey believes the cause may be the cancerous lymph nodes. They are enlarged and pushing on my back and radiation may help shrink them. I will probably have a lot of nausea with the radiation because of the area they are radiating. I'm anxious to see what Dr. Edlund has to say tomorrow because radiation is his area of expertise (where Downey's is with chemo).
So for now I'm doing my best to stay on this fine line between reality and denial and not to fall too far one way or ther other.
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. For you have been my refuge, a strong tower against the foe. Psalm 60:1-3
Reality though ~ that's not such a great place to be. I try not to visit there very often. Cancer has a permanent residence in reality. It's a frightening place to be - there is a looming sense of fear and and hopelessness in there.
I much prefer to spend my time in denial but unfortunately reality always finds the back door and sneaks up on me. After I have been in reality too long I find myself desperately looking for the path back to denial. Occasionally I have been on the thin line between the two places. I stand very still with my arms stretched out to keep my balance. I look at reality long enough to process things that need to be dealt with. Then I take a quick glimpse into denial simply to keep my sanity ~ to keep me from falling into a great big deep pit of darkness.
I am not able to stay in reality very long. It's too hard. And I don't think that is where God wants me to dwell either. I need to go there once in a while because life doesn't stop. Life happens and we have to deal with it and move on. I think God gave us the gift of denial to help us cope. This gift can be taken too far though and if we stay in denial too long it can become extremely difficult to leave. The issues that are in reality continue to grow and they need to be processed.
We are in the state of processing things right now. Today's appointment with Dr. Downey went better than I expected but it wasn't at all what I was expecting. My CA125 went up to 551. That didn't really surprise or bother me. My ct scan showed that the cancer is spreading through my lymph nodes so the fact that my CA125 was going down earlier didn't make a difference. The positive note from the scan was that all my organs and bones appear to be fine. The cancer just really seems to like my lymph nodes. It is still fairly confined to my abdominal area.
Tomorrow we will be meeting with Dr. Edlund. This is the doctor from LAROC that I saw at the beginning of this year when I had radiation on my neck. Right now I am still having a lot of back pain and Dr. Downey believes the cause may be the cancerous lymph nodes. They are enlarged and pushing on my back and radiation may help shrink them. I will probably have a lot of nausea with the radiation because of the area they are radiating. I'm anxious to see what Dr. Edlund has to say tomorrow because radiation is his area of expertise (where Downey's is with chemo).
So for now I'm doing my best to stay on this fine line between reality and denial and not to fall too far one way or ther other.
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. For you have been my refuge, a strong tower against the foe. Psalm 60:1-3
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