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