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...

Christmas 2010

Merry Christmas!!!

Brian & Kristi
Ashley, Nathan & Emily

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

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?

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!!

ah yes, don't you miss the '90's?!

(and no, that ain't no stinkin mullet!)

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.

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!

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.

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

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

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

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.

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 :)

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...

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!!)

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!

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.

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: Getting Back Up

A much better Sunday...

Rogalske Goofy Family Video from Brian & Kristi Rogalske on Vimeo.

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: 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

Sunday, October 31, 2010: These Sundays

I love Sundays. Sundays around our house are usually very quiet. We start the day by going to our House of Worship. We hang out afterwards talking to our friends drinking coffee. Seems every week we are the last ones to leave - I used to complain about my parents doing this when I was a child and now I'm doing it...Yikes!! When they pack up the coffee that's our sign to wrap it up and head for home. When we get home from church we just veg for the day. We usually don't answer the phone. The kids get a day of downtime from their friends and homework. Mom and Dad sometime work in a nap. Well, mommy does. Dad doesn't do naps. Just relax...that's all we do.

I love Sundays. Well, except for 'these' Sundays. What type of 'Sundays' am I talking about? The Sundays before Downey days. We see Dr. Downey on Wednesday. The Downey days are becoming quite downers of late. We don't know what we're going to do next. Kristi has been having a lot of pain in her lower back and abdomen. When ovarian cancer gets into the lymphatic system it's just a matter of time. What organ is it going to go to next? Right now it's camped out on both sides of her kidneys but hasn't gone in to the kidney yet. Has it now? So maybe a new chemo? Quality of life. That's what we're balancing now. We know the end is inevitable. So do we extend her life by 6 months that will be filled with nausea and more fatigue? Or just let things run their course. Making these types of decisions make the rest seem very trivial.

Kristi gets down on these Sundays. Very down. This time it seems as if her down time started about 3 weeks ago. Today as the day went on I came down with her. I realize it's real. I realize it's not going away. I know what the outcome will be. Yet, I still don't consider myself as 'the guy who's wife is dying'. I know I am. I know she is. I just hate hearing it. I was referred to as 'that guy' today, not directly, but as a part of a teaching moment. I knew who this person was talking about and didn't mind being a part of his story...quite honored actually. Reality is I am 'that guy'. Cancer sucks. It really sucks. And I hate being 'that guy'.

We will post after our Downey visit Wednesday. We can't wait to hear what uplifting inspirational words of wisdom he will have for us this week. NOT.

I'll leave on a happier note. Here are some pictures from our weekend getaway last weekend. Talk about relaxing!

Saturday, October 23, 2010: You Can Run But You Can't Hide

Have you ever been walking along a path and saw the person in front of you push a branch aside that was in their way? You know what happens next – before you have a chance to react the branch comes flying back and smacks you in the face. Just minutes before this you had been so absorbed in the beautiful scenery and now you're on your butt, hands over your face, reeling from the pain and crying your eyes out.

Sure, there were probably roots in the woods along the way that you had tripped over earlier and some poison ivy that had been quite irritating. Maybe there were some spiders that freaked you out and possibly even a snake slithering by that really sent you into a tizzy. But you had managed to keep yourself together and kept walking.

Maybe you had even lost your balance on some rough terrain and fell down (a.k.a. been diagnosed with cancer, went through multiple surgeries and chemo treatments, rode on that roller coaster far too long only to be told that you were "terminal"). You dealt with it though. You had stood back up, brushed the dirt off your hands and continued walking. The tears had dried up and you had even begun to see the sunshine breaking through the tree branches. You had looked up and saw the sun reflecting off the leaves that were still hanging onto the trees. It was breathtaking and you even broke into a smile and began to relax and then – WHAM! There is that stupid tree branch again. I am so stinking tired of that stupid tree branch. For me, that tree branch is reality.

Brian and I just got back from our most favorite weekend of the year. We love our children and spending time with them but once a year in the fall we get away - just the two of us. We have a 30 year old pop-up camper and we fill it up with food (all healthy of course - not!), movies (we bring along a tv, dvd player and surround sound speakers - you know - basic camping gear), books, magazines and of course, the dogs.

When we first started this it was just to get away. For the past few years though we have left more behind than just the kids. We've left cancer behind too. We look forward to this weekend all year long - our escape from reality. Every year we have a great time. Every year though it becomes harder and harder to come back home. I'm always anxious to see the kids again (not to mention a clean, sanitary bathroom) but reality is always waiting at the door to greet us. Every year it gets a bit harder. This year it slapped me in the face so hard I think I still have red marks. You know, the kind that you get from that stupid tree branch.

I’ve patched myself up again and dried the tears. I’ve wiped the dirt off my hands, once again, and am taking it one step at a time. I was even laughing, dancing and singing tonight (I Gotta Feeling by Black Eyed Peas) with Ashley & Emily while we made apple crisp and carved pumpkins. Emily thinks I’m awesome and I think Ashley was very happy that we weren’t out in public at the time.

I still get really angry when I think about cancer and how it has impacted our lives. Cancer is our “it”. Everyone has some kind of “it”. It’s not always cancer and it’s not even necessarily a medical diagnosis. It’s just “it”. Yuck. Not good. An annoying slap in the face by a tree branch when you least expect it.

I hate falling down. I hate crying. I hate starting over again. I hate thinking about “it” and the impact it has had on our lives and will continue to have. I hate the loss of control I have. I hate tree branches slapping me in the face. I hate that I keep using the word hate!

It seems like I usually have a song or a verse to share at this point but today I don’t. Today I just put one foot in front of the other. I know God is there quietly cheering me on. He’s not talking to me right now or better put . . . I’m not listening. I’m sure He’s there though. He’s in the bright red beautiful leaf that refuses to let go of the branch. He’s in the twinkle that I see in Emily’s eyes. He’s in the wisdom that I hear in Ashley’s words. He’s in the delicious aroma of freshly baked apple crisp. He’s in the boom of the thunder and flash of the lightening outside my window. He’s also in the quiet rhythmic ticking of the clock. He’s there. He is.

And every time that stupid tree branch comes and slaps me in the face He’s going to be there to catch me and help me back up onto my feet again. You can run but you can’t hide from reality. It’s always there just waiting around the corner ready to pounce. Thankfully you can’t hide from God either. He’s right there ready to block that branch from hitting you or help pick you up after it strikes. Either way, He’s there. And I’m so glad He is.

Friday, October 15, 2010: Because I Love You

I was at the vet this afternoon with our dog, Pico. We had found a tick behind his ear earlier this week and even though we were able to pull it out (gross!) he had a small lump growing. He was also due for some shots, toenail trim and some other routine things that smaller dogs require that are no fun at all.

I could hear Pico whimpering and crying in the other room and I felt so bad for him. People that he didn't know were poking and prodding in areas he didn't want to be messed with. As I listened to his cries I just wanted to hold him and tell him that it will be okay. I wanted to let him know that I loved him and that even though he didn't understand why all of this was happening it was all for his own good. I could see the bigger picture and knew what was best for him and that in the long run this would all be worth it. All the sudden it was like a light bulb went on ~ this is what God has been trying to explain to me. It was a small glimpse into how He is taking care of me.

My initial selfish thought was "could you please stop loving me so much?" That was pretty silly though though because He can't. Despite the hundreds of thousands of millions of times that I mess up He loves me too much to stop loving me.

I still hate cancer. I still can't imagine reasons behind all the yucky stuff that goes on in this world. But I guess I'm not supposed to.

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD.
Isaiah 55:8

Thursday, October 14, 2010: Tumors, Tumors, Go Away!

Dr. Downey called tonight with the results of my ct scan. The scan showed that the tumors on my kidneys are still growing (despite the fact that my CA125 is going down). That kinda stunk to hear that but I can't say it surprised me. On a positive note, this was the only area that showed any evidence of disease (the scan went from my neck to my lower pelvis).

The plan for now is to wait until our next appointment which is November 3. That means three more weeks without chemo - yea! There is also another chemo pill that I can consider taking. Both of the pills are of course toxic and I need to weigh the pros and cons. I'm not against starting treatment again but I'm not going to even think about that now - did I mention three weeks without chemo? Love it!

If I should start to feel sick between now and then (nausea and pain in my upper stomach) it is possible that the tumors could be causing it and then we may start the treatment sooner. The tumors are not growing at an alarming rate now though . . . . if there are even tumors at all. I seem to recall at ct scan a few years ago that showed tumors all over my liver and during surgery a couple weeks later they found a completely healthy liver with no traces of cancer!

So for now we enjoy another break from chemo and ask for prayers for continued guidance on this journey.

Wednesday, October 13, 2010: Duck!!

The title of this update is not referring to the animal. It is a warning to duck because there is a major mood swing in progress over here and if you don't duck you may get hit.

I've noticed lately that when I update the blog and share the power of God working through me that I become a target. I may as well put a great big red bulls eye on my forehead because that is right where the enemy comes at me.

Was it really only a few hours ago that I had complete peace? Cuz I've lost it. Just like that. Lie after lie has been slung at my mind to the point that I don't even want to post positive updates anymore because this is so hard. I'm not giving up, I'm just tired. And I need prayers, lots of them.

Weeping may remain for a night but rejoicing comes in the morning. Psalm 30:5

Wednesday, October 13, 2010: The Bigger Picture

So many things going through my mind right now. God has been sharing so much with me. I quite often "hear" Him through songs or just a thought in my mind. Recently it has felt like the skies have opened up and He has a megaphone and is yelling "You. Yes you. I'm talking to you!" It is to the point that I am in awe. I am overwhelmed at what I feel He is calling me to do and also amazed at the crystal clear communication I am hearing from Him. It is so easy to say "yes, I believe in God" and think you mean it and then you have a mind boggling experience and realize that He is real. So very, very, very real! And He is talking to me!!!

I've talked to Brian recently about everything going through my mind and I know he is in awe as well. However, his reply one day really cracked me up. After sharing everything that I have been processing and talking nonstop for quite a while he was very quiet. Then he says "twenty seven thousand four hundred sixty three to three hundred twenty four". I said "huh"? He says "you've said twenty seven thousand four hundred sixty three words so far today and I've said three hundred and twenty four". I wasn't sure whether to hug him or slap him :)

Some day I will post all the conversations God and I have been having lately but right now they are a big mixed up bag of thoughts (with apparently too many words). Today I heard the song I Am by Ginny Owens on the radio (I've never heard this song before today). Even though what God has been telling me seems like it should be simple to understand and do I am still struggling and processing it all. The chorus of the song cleared everything up for me:

’Cause there's a bigger picture you can't see
You don't have to change the world, just trust in Me
'Cause I am your creator, I am working out my plan
And through you I will show them, I Am

Some days (okay, every day) life seems so hard and complicated but this it what it all boils down to. I Am. He is. I can't mess up because He is my creator and He is working out His plan. All I need to do is trust Him. And through me - little, tiny, messed up, insignicant, broken and human me - you will see Him. Yes, cancer sucks. It sucks big time. But because cancer has broken me - you can see Him even more clearly through me.

I'm sure many of you are wondering if we have results on my ct scan yet. I haven't heard anything yet (and doubt I will until at least Thursday or Friday). To be honest I haven't really given it a second thought. I could be a phone call away from hearing "the results showed that the cancer has spread" and I'm not the least bit worried (yes, I have my moments of fear, I'm human, but at this point in time right now I am not afraid). God has the bigger picture in sight and He's got my back. How awesome is He??

Friday, October 8, 2010: I Can Do All Things

I had a ct scan this morning. I remember the first time I had one. I was so freaked out by the huge machine. Now they are no big deal. I don't care for the "smoothie" that I have to drink the night before and the morning of (or the effect it has on my stomach) but again, no big deal. The needle that they have to poke into my arm for the iv contrast, well, can't say I'm a fan of that part.

My veins have really taken a beating over the past few years. I've had blood drawn a minimum of once a month for almost the last four years. The scar tissue has built up and when the needle hits it . . . . ouch. Although today wasn't a big deal, it was a big ouch.

The first poke was so painful that I jerked my arm which caused the needle to come back out. The second attempt (in my other arm) went in and was working (good blood flow out, saline was able to go in) but it hurt so bad I couldn't stand it so she had to take it out. Even after she took the needle out it still felt like it was in and well, it wasn't fun. They called in one of the nurses from urgent care and she was able to get a needle in without too much pain on the third try.

Typically during something like this I would be sweating and cold, nauseous and freaked out. Not today. Today during this entire experience I kept repeating this verse over and over in my mind.

I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.
I can do all things through Christ who strengthens me.

Today's ct scan was just a routine scan. I didn't have any reason for it other than I was due for one. No big deal. It wasn't fun but I got through it because of the strength that Christ gave me. The results will be in sometime next week. For now, we wait. And no matter what the results show, I will be okay because ~ I can do all things through Christ who strengthens me!

Wednesday, October 6, 2010: Sticky Boogers

These are my feelings right now. I’m processing what was said today. Just journaling to work things out. Dr. Downey didn’t find any new “lumps or bumps”, which was good. But he made some unusual comments that just stuck in our minds. I take longer than Kristi to process this stuff; it tends to stick with me longer.

He starts the appointment with a surprise. “So you want to take a break from the chemo? I think that’s a good idea. Let’s start it up after the holidays.” That kinda took us off guard; we were thinking a month, but OK. Of course, that was followed by “we want to keep you feeling good through the holidays. We don’t know how many you have left.” Then he moved along to something else. But that comment stuck. Stuck like a sticky booger. You know the kind. The kind you try to flick off your finger discreetly but just won’t come unstuck. That’s what it was like. A big fat sticky booger of a comment.

At the end of the appointment, he leaves us with “you may want to make some videos of Kristi talking to the kids. So they have something to remember her by when they get older.” Ouch. Not what I wanted to hear today doc. Was feeling pretty good. Yup. Now, I’ve got 2 big fat sticky boogers stuck to my finger. I’m shaking and shaking and they won’t let go.

It’s just heavy on my mind right now. Searching for a Kleenex to wipe these boogers on.

Like Kristi says…it’s satan working through Dr. Downey to bring us down. Kinda ironic as the doctor’s name is Dr. Gordon O. Downey. Gordon O. Downey. How perfect for satan to work through him.

"All Your promises won't let go of me"

But these boogers will soon dry up and fall off.

God, thank you. Thank you for your unconditional, no strings attached love. A love that can only be given by You. A love that so many people brush off, or take for granted. When things are going well it's so easy to take You for granted. Please forgive us for that complacency. Lord, You never promised us an easy, pain-free life. We brought pain and suffering on ourselves. Please, Lord, help us remember that. Help us get through these next few days as we/I process these emotions. Help us to not get angry, frustrated or resentful. It's so easy to fall into that trap. Forgive us as we fell into that trap again today. Thank you for being the one consistent Lifeline that we can always count on.

Thank you God.

Amen.

Tuesday, October 5, 2010: Praise Is Rising!

I woke up this morning with a song in my head. It is pretty common for me to have a song running through my head but I don't know if I have ever had a song in my head the second I woke up. I am not a morning person so there isn't typically anything going through my head when I wake up! But today . . . these are the words I heard the second I opened my eyes.

Praise is rising ~ eyes are turning to you ~ we turn to you.
Hope is stirring ~ hearts are yearning for you ~ we long for you.
When we see you we find strength to face the day.
In your presence all our fears are washed away ~ washed away.
Hosanna, hosanna ~You are the God who saves us, worthy of all our praises.
(Praise Is Rising by Paul Baloche)

I came downstairs and heard Ashley in the kitchen singing . . . . yup, the exact same song! Coincidence? I don't think so! I have been praying that I will praise Him no matter what and I have had an unexplainable peace about this. I just got off the phone with my nurse and my CA125 dropped from 422 to 366! I'm sure my doctor will have a "rational" explanation for this drop despite the fact that I'm not on chemo. We have an appointment tomorrow morning at 9:15 for a physical exam and also talk about where we go from here.

I will continue to trust Him and praise Him no matter what . . . but, can I just say that it is soooooooo awesome to get good news like this! We will update tomorrow afternoon - in the meantime, here is a link to the beautiful song that I started my day with.

http://www.youtube.com/watch?v=7BZoDH2H1Ls&feature=related

Saturday, October 2, 2010: Can You Hear It?

Have you ever heard the voice of fear? Sometimes this voice sneaks up on me. I can be in the middle of a typical day and then all the sudden - WHAM - out of nowhere comes this ugly fear that grabs hold of the carpet underneath me and pulls it out. The next thing I remember is being flat on my back having no idea what just hit me.

Sometimes the voice is sneakier. I hear a faint complaint "don't forget about that lump in your neck". I try to ignore it but it gets louder "I think it's getting bigger". I hear things like "you should really get that checked out" and "it's not looking good". And then the voice's favorite grand finale "the cancer is spreading!". Before I know it I have worked myself into a panic thinking that the cancer has spread from my head to my toes.

This time the voice tried something different. It wasn't loud and it didn't come on quickly. It was a slow and steady rhythm like the sound of a leaky faucet - drip, drip , drip. It was stuck in my head and wouldn't stop. It just kept going on and on ~ drip, drip, drip. You have cancer. You have cancer. You have cancer. You have cancer. You have cancer.

This has been going on for a couple days now. I can't get my mind off of cancer. I try to focus on other things but it is still there quietly nagging at the back of my mind. You would think after almost four years of dealing with this I would be used to it. I don't think I will ever get used to it. It feels like a bad dream that I can't wake up from.

The voice never got louder but it never let up. It was lulling me into a dark, lonely place of sadness. At the core of this darkness though there was a small ray of light that refused to go away. There were times that I thought that little glimmer of hope was going to be snuffed out by the constant drips of lies that the voice kept repeating.

I convinced myself that I needed to read the bible (despite the voice telling me not to) and I noticed the dripping started to slow down. I put Christian music on and it was like an umbrella had opened and was covering me from the constant attack. I can still hear the "thud" as the drops hit umbrella but this barrier has helped me put things back into perspective. I can see now that the ray of light wasn't getting smaller - it only appeared to because my eyes were so focused on the dark drops of rain falling all around me.

Good-bye (and good riddance!) voice of fear. I'm listening to the Voice of Truth now.

But the voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth

(Chorus from Voice of Truth by Casting Crowns)

Monday, September 27, 2010: This Little Light of Mine ~ I'm Gonna Let it Shine

For quite a while now I have been feeling distant from God. My prayers had become more focused on me - why do I still have cancer, why won't it go away, please make it go away, I can't take it anymore! I'm not sure when it happened but my prayer life has taken a turn. I find myself praying more and more about seeing the world through God's eyes and less about cancer.
I have also been feeling for a while now that God is up to something. Something big and something good. The song Wait & See by Brandon Heath sums up exactly what I'm feeling.

Still wonderin' why I'm here.
Still wrestling with my fear
But oh... HE's up to something,
And the farther out I go,
I've seen enough to know
That I'm not here for nothin'...
He's up to somethin'.

There is hope, for me yet,
Because God won't forget,
All the plans HE's made for me
I have to wait and see,
HE's not finished with me yet,
HE's not finished with me yet.

Yesterday before my feet even hit the floor I prayed again that I would have His eyes. As I was about to walk into church I saw groups of people standing around and I had the thought "do they realize that they just spent time being filled up with God's word? Do they know how lucky we are to be able to worship together? Will they take what they learned during the sermon and apply it to their lives or was it left at the door thinking 'okay, I've done the Christian thing for the week'? When I say "they" I am also including myself. I've asked these questions about myself and I didn't like what I heard. I had fallen into the "get up, go to church because it is the right thing to do, go home and start thinking about the week ahead"

As I walked into church I was overwhelmed with the noise. There were people everywhere! Brian was already in there because he had attended a Sunday School class at the early service. As I was trying to figure out how to get the kids and I through this mass of people I saw one of Brian's friends. Jokingly I said "hey, you want to cut us a path through this?" He said "let's go" and we walked right through that wall of people.

If I had been the one leading us through it would have taken us forever! I become overwhelmed quickly in loud, busy social settings. Walking through the chaos typically makes me feel like a tiny ant trying desperately to crawl to the top of the pile. As I focused my attention on our 'fearless leader' though the noise fell away and I simply moved forward one step at a time and before I knew it we were through.

At the time I was thinking how cool it was that we made it through so quickly. This morning though I can see how that experience compares to every day life. There is chaos all around us and if we stop and focus on it then we will get bogged down, overwhelmed and stuck. If we keep our eyes up and focused on God then He will keep a clear path and guide us where we need to go.
By the end of church I had an ache in my neck (the area that was treated with radiation) and the pain had moved down my arm and up into my neck. The top of my hand and my cheek were both tingly. Of course my instant reaction to anything "off" is that it's the cancer spreading. I left church right after the service ended, went home and went to bed. Before I went to bed though I looked at email (yes, I have an obsession problem with email). There was an email from Dayspring Blessings which I typically just delete because it is always just a very short devotion with a link to their website. I had my cursor on the delete button when I heard "read it first". This is what it said:

In Case You Ever Wonder...

Hello, you-
the one with that dream in your heart,
that idea on your mind,
that desire that just won't go away.

You wonder...can I do this?
You can do all things. (Philippians. 4:13)

You ask...do I have what it takes?
You've got all you need. (2 Peter 1:3)

You question...is who I am okay?
You're more than okay, you're His. (Psalm 139:14)

So go for it.
Dare to make that difference, take that step, follow that dream. God will go with you, and love will see you through.

I had to sit down after reading that. I thought "who wrote this and how do they know that I have had a dream in my heart, a desire that won't go away, and questions about being good enough"? It was like God hitting me over the head with a 2x4 (okay so He wouldn't really do that but you know what I mean).

I went to bed with that email in my head. If I hadn't read the email I would have probably have gone to bed, let my mind go to the worst case scenario of what was causing my neck pain and fallen into a deep, dark, lonely pit.

Instead, I went to bed thinking about the email. I've been hearing God call me for a long time now to do something but I just couldn't figure out what it was. I'm still not quite sure but I know it has to do with my story - my journey through cancer with God and the person I've become as a result of it.

The more often that I pray to have His eyes and His ears I am noticing that I see things in a whole different perspective and hear His voice more often. Although this is very cool it is also scary. I get really uncomfortable when I feel Him nudging me talk to someone about something I heard Him say.

I've had friends do that to me before and I am always amazed at what they shared (and the courage it took to share it) that I want to say "keep in touch and let me know if He tells you anything else"! But being on the other end of this conversation is hard. I'm afraid they will look at me like I'm crazy or get mad at me. I really, really, really (did I mention really) hate conflict and will try to avoid it at any cost. I am quite comfortable in my safe little bubble world!

Quite a few years ago (maybe 5 or 6?) I was going through a lot of depression and anxiety that I didn't understand. I began writing poems and wrote a lot of them. This is one of the last ones I wrote:

God told me to write a book, but He didn’t use those words.
He simply put it on my heart - there’s a message to be heard.
I’m not quite sure what the message is or who it’s intended for,
but I know that in due time He’ll open up that door.

I think that door has been opened. Not only do I want to write (or speak) about living with cancer but I also want to share how this has changed my relationship with God. I was your basic "grew up in a Christian home, went to college, got married, had kids, made good choices" type of Christian. After being diagnosed with cancer I realized that I had so much more to learn about what being a Christian meant. It's not just about going to church. When people start talking about statistics and putting you into one of the categories (and not the ones you want to be in!) it really puts life into perspective. All the silly little things just don't matter any more.

I've grown a lot over the past few years - both Brian and I have. He also has the basic "grew up in a Christian home, college, married, kids, do the right thing" kind of story. Cancer has changed both of our individual relationships with God and our prayer lives. Choosing to be in the spotlight and put it all out there with the blog can be overwhelming at times. There are days (lots of them) where I really wish that nobody knew me or that I had cancer. I don't want their first thought to be "oh, there's that poor girl with cancer". That's what I've been feeling for a while now but I realizing that I can change that. I can be the "hey, there is that girl that has an amazing story to tell about how God has changed her life" and "wow, I'd better put my sun glasses on because God's light is just beaming through her!"

I think maybe the cancer is still here because God's light will shine so much brighter if I am broken. I still would love the cancer to just disappear but if this is how God is choosing to use me then my prayers will be for the strength and patience to endure, wisdom to make the right medical decisions and that He would use our story in a mighty way to bring many to know Him and also to bring those that already know Him even closer.

A few weeks after being diagnosed I wrote this in an update and I meant every word of it ~

God is working through me and through all of you and together we are going to turn many more sheep into God’s pasture! Isn’t that amazing! What an honor! First, I know some of you may have been online or researching ovarian cancer. The numbers are not good. However, I do not believe in these numbers, I believe in God. I am not in denial, I just am choosing to believe that God has a plan for me and that plan involves surviving this cancer and becoming His light for many, many years to come. Should this not be the plan, I will cross that bridge when it comes my way. For right now I am praying boldly that this is God’s plan for me and I would like you to do the same. Do not dwell on numbers because it becomes overwhelming! Dwell only on God!!! Together with all of us (and we are a mighty team!) praying boldly we will all win this battle and it is going to change all of us. I have seen amazing changes in many people close to me and have heard of many others. God is working through me and through all of you and together we are going to turn many more sheep into God’s pasture! Isn’t that amazing! What an honor! I know together we can do it. Please hold everyone up in prayer and encourage them. I have never really been a very "open" person before but I am changing. It is so important to encourage one another as the bible says. Let God’s light beam through all of us and just imagine how bright this world will be!!!!

I am finally feeling that energy and passion again! To be honest, when I read stuff like that post I think -wow, they need to cut back on the sugar! My judgemental side kicks in and thinks they are just saying all that for attention. I wrote this though I know that it wasn't for attention (I'd much prefer to be a wallflower)! I remember feeling that passionate at the time I wrote it. I've had many times throughout the years where I'd read that again and think "okay, I know I was sincere when I wrote that but right now that peppiness is really annoying"!

I've been praying for that passion to return for so long that I didn't think it would ever come back. It would come back a little but then Satan would get his jabs in and I'd give up and listen to his lies. I know that he is trembling right now and I also know that I have a big red bulls eye on my forehead that he is going to start aiming at with everything he's got. And he's going to use his same old tricks which thankfully I am catching onto.

Well, this is officially the longest post I have ever written! So much more is going through my head but I've quite possibly lost many readers before they even made it halfway through this post. So, I will end with the words of a song that I just can't (and don't want to) get out of my head. It's Set the World on Fire by Britt Nicole.

I wanna set the world on fire
Until it's burning bright for You
It's everything that I desire
Can I be the one You use?

I am small but you are big enough
I am weak but you are strong enough to
Take my dreams come and give them wings
Lord with You there's nothing I can not do,
Nothing I can not do.

Wednesday, September 22, 2010: No Matter What

I've been experimenting with the chemo pill over the past couple of weeks trying to find a routine that I could physically tolerate. The original plan was 3 weeks on ~ one week off. I was only able to handle that for maybe three months or so. At my last appointment we decided to try two weeks on and two weeks off. I took the first pill that night and was miserable already the next morning with nausea and fatigue.

I've tried every combination I can think of - two nights on, one night off ~ one night on, two nights off ~ one night on, one night off. The only thing that was consistent with all of this was the fact that this pill makes me sick.

I've been talking with God about this for the past few months. I have stopped treatment before when I felt God was telling me to and I don't regret any of the times I did. I've been feeling like God has been telling me to stop chemo again recently but it's a bit different this time.

I was struggling with the thought of stopping chemo a bit more this time because as much as I trust God, well, let's just say statistics can get the better of me. Medically speaking there are not a lot of options out there for me anymore. Last week I found myself saying "okay God, I'll stop the chemo now because I believe that you can heal me" and I heard "that's not what I'm saying". That threw me for a loop. Then I heard "I want you to trust me - no matter what". Gulp.

Obviously my first choice would be that after stopping chemo my cancer would "mysteriously" disappear because well, that would just simply be awesome. I don't get to choose how this will all play out but I do have a choice right now ~ I can choose to listen to God and obey Him - no matter what.

This in no way means that I am giving up. I am choosing to listen to God right now and do what He is telling me right now which means ~ bye bye chemo! (Yup, doing a happy dance right now!). I actually stopped chemo a few days ago and I am feeling much better. I am stronger and so much less fatigued.

Throughout the past few days though satan has been on the prowl. He's been hurling lie after lie at me and I've bought into them. Yesterday a light crept into the darkness and pulled me out. All his lies were exposed again and this time I let him have it ~ I drop kicked his sorry butt right back where it belongs! Okay so honestly this entire exchange happened in my head but it was powerful. Some day I will break out of my shell and literally scream at him but for now this seems to be working for me because I felt the darkness break up and leave. I'm sure this means he's regrouping now and going to come back at me even harder to which I have three words for . . . . "bring it on".

Sunday, September 19, 2010: We Are Family

Today was an odd day but a good day. Come join me as I revisit a day in the life of the Rogalske family . . . .

We are not morning people but despite the odds we were all able to get up and out of bed. Sunday School officially started today so my wonderful loving husband took Ashley & Nathan to the early service. He even went to an adult Sunday school class that began today.

Thanks to my awesome husband Emily and I were able to sleep in a bit longer - too long actually so we scurried to get ready and out the door in time for the second service. We made it in time but because they were implementing a new secure check-in and it was the first day of Sunday school things were just a bit too chaotic for Emily so we checked out (securely!) and headed back downstairs.

At this point church had already started and they were in the middle of baptism. We decided to stay out in the narthex so we pulled out some chairs (the cool tall kind where we could dangle our feet!) and watched the service on the tv monitors. After a while, Ashley came out to check on us and since her poison ivy was bothering her she decided to stay with us. It was a great service and I'm glad I got to sit and listen to it with my girls.

After church we headed home to have some lunch together. You know, the meat and potatoes kind of meal that warms your soul. Oops, wait, that wasn't us. Actually, Brian and I had Lucky Charms cereal, Nathan and Emily had ham & turkey sandwiches and Ashley had a granola bar. Yum. The kind of meal that makes a mama proud!

Brian took the kids' pictures after lunch. Thanks to the digital age Brian has been taking the kids' school pictures for a few years now. We usually do the traditional background. Last year he took their pictures outside and this year he used a green screen and let the kids pick out their own background.

This afternoon we chilled out in the living room. Brian at the computer working his magic with the pictures ~ me on the couch resting as usual ~ Ashley on her laptop ~ Nathan right next to her (doing his best to drive her bonkers) and let's not forget Emily ~ sound asleep on the floor ~ making snorting noises!! It just doesn't get any better than this.

We had a great family supper together (yes, it was healthier than lunch). I ended the day by going out for hot chocolate with Ashley (my teenager asked me if I would go out with her for hot cocoa - woohoo!!!!!). It was a good day.

Wednesday, September 15, 2010: Stupid, stupid, stupid

Stupid cold. Stupid chemo pill that lowers my immunity so that I catch colds easily and take forever to get rid of them. Stupid cancer that is the reason I take the stupid chemo pill that lowered my resistance and caused me to catch the stupid cold to begin with! Stupid, stupid, stupid!!

Translation: I have a cold. I feel awful. Cancer is stupid.

Note from the publisher: Stupid is not a nice word and should not be used unless it is combined with the word cancer in which case it is completely appropriate.

I Need A Home

We're looking for a good home for our cat, Rosie. She's 4 years old. She is very social (for a cat). She's great with kids. She is an indoor and outdoor cat. She loves the outdoors when the weather allows. She has never strayed from the yard. I have to admit, for a cat she's OK. But, there is one little issue. Last spring when our basement flooded and we had to tear the carpet out...well, she now thinks the entire basement is her litter box. We have never finished the basement since the flood so we think that's why she's confused. We had her for 3 years before that and she never had an accident. With everything going on in our lives, I just don't have the time to clean up after her and try to train her. Our fear is that too much time will pass and she will never be "trainable". We would like to find a good home for her to live in. She is all up to date on all of her shots and is spayed. Front claws are declawed. We won't charge. Leave us an e-mail at bkrogalske@yahoo.com if interested.

Wednesday, September 8, 2010: Steady Eddie

Kristi's appointment with Dr. Downey was uneventful this morning. Her CA125 dropped slightly to 422. No much, but in the right direction! Tonight she will begin her 5th round of her latest chemotherapy. She is going to go 2 weeks then evaluate. If she can handle a 3rd week then she'll go for it. If not, she'll take 2 weeks off. This is the plan Dr. Downey agreed to.

That's all for now.

Monday, September 6, 2010: Just The Facts

We have an appointment with Dr. Downey on Wednesday morning.

I went in last Friday and had blood work done (including the CA125).

We will get the results at that appointment.

I've felt a little better every day the past week.

It's late, it's a school night and I'm tired.

Will update again after Wednesdays appointment.

:)

Tuesday, August 31, 2010: Update

I just wanted to give an update on Kristi. She has stopped taking her chemo pill for now. She spoke with her nurse yesterday and since we already have an appointment next week her nurse agreed that was the right thing to do. So physically she is feeling a little bit better each day. She still gets fatigued very easily and has to take breaks often. She over did herself today and when I came home from work she was crashed in bed.

Emotionally, she is also a little better but she still has several aches and pains and rashes all over that are concerning. Her nurse said that none of the symptoms Kristi described are common with this chemo. So that of course gets her mind going. Saturday (or Sunday - all the days blend together these days) we had a brief breakdown. Basically, we talked about how much reality sucks. Cancer sucks. Have I ever said that before? After nearly 4 years we have become excellent liars. When people ask "how are you?" we can reply "OK" or "good" in a pretty convincing way. I have to admit, Kristi is way better than me. I tend to wear my emotions on my sleeves, Kristi is the quiet one. You have to watch those quiet ones. Reality is we're not really OK. We're anything but OK. But what are we supposed to do? If we just dwelled in self pitty the days would be miserable. So we try to make each day better than the last. We know we only dwell in these temporary shells for a limited amount of time so we're thankful for every additional day we're here. That sure is easy to type. Now walking the talk is the tough part.

On a lighter note, the kids had their first day of school yesterday. We now officially have a middle schooler. Where did the years go?!

A couple weeks ago I went on my annual "man trip". This year we went to the Algonquin Provincial Park in Ontario. We spent a week canoeing, hiking, more canoeing, well, mainly canoeing. We did of course find a nice 33' cliff that needed to be jumped from. I took a couple pictures during the week. This is one of my favorites. The loons were incredible!

Here's a short video (1 minute) of our jump. And for the record, I wasn't the only one that chickened out on their first attempt. But I was the only one that plugged my nose. Oh well. After hitting play, click on the 4 little arrows in the lower right corner for full screen HD.

Sunday, August 29, 2010: One Week of Being Weak

It's been one week now. I'm still tired and weak. I have very little energy, occasional bouts of nausea and I'm achy. I'm sick and tired of being sick and tired. I am going to call my oncologist tomorrow morning and ask to have blood work and a ct scan done.


On a more positive note ~ it's Nathan's 10th birthday today ~ Happy Birthday Nathan!!!!!


We've added a new link to the blog ~ it's a meal schedule. If you would be willing to bring a meal click on "Bring a Meal" and it will bring you to a website where you can sign up. Thank you!!

I need to keep it short tonight because...I'm tired.

Friday, August 27, 2010: In Need of Prayers

Please pray extra for Kristi as she continues to struggle with nausea and fatigue. In her usual fashion, she way understated her side effects in her last post as “feeling crummy”. I can tell you she feels worse than crummy but she doesn’t want to have everyone worried about her. She’s always thinking of everyone else. :) Seems like she has been sick more than not the past couple months. She gets out when she can but then usually pays the price when she gets home by having extreme fatigue and nausea. This is really hard on the kids as Kristi is usually too tired to go on bike rides, play outside, etc.

Her mind (and mine) has been spending a lot of time thinking about the “what ifs”. This is mentally draining on top of her physical fatigue. We also have had 3 deaths recently that were pretty close to us. 2 out of the 3 were cancer related. Those really hit close to home.

So as we go into the weekend, please hold Kristi and the family up in extra prayers.

Thanks!

Monday, August 23, 2010: A New Journey

I have been feeling crummy the past couple days. Yesterday started with me throwing up all the water I had drank that morning. Gross. I was very weak and tired but by the end of the day I was able to eat food and keep it down. I was still very fatigued though.

This morning I was still very tired. I was able to eat and wasn't nauseous but I still had that weak/tired feeling. My dear sweet husband stayed home from work to "babysit" me. We ended up going in for blood work this afternoon to see if maybe my counts were low. My nurse just called me with the results and apparently I am "fine". My counts are good.

So, maybe I just have some sort of bug that will hopefully go away soon. The kids start school next week and a lot of things need to happen between now and then - no time for germs!!

On a completely different note ~ I have started a new blog. I've been wanting to do this for quite a while now. Most of my updates on this blog aren't really cancer related - they are more about my relationship with God. I wanted a place to share the things He is teaching me that was completely separate from cancer. We will still keep this blog going when we have medical information to share. All my other postings will be on my blog. The address is www.krogalske.blogspot.com. A new journey has begun!