Sunday, May 29, 2011: Getting Physical

Blog entry number 700.  Who would have thunk it?!

The changes in Kristi are becoming more apparent as her physical appearance is starting to change.  The most noticeable change I saw today was in her arms.  Her face is appearing thinner but her arms have become very bony.  It was probably a gradual progression all week but I just noticed her arms today.  It startled me when I noticed them;  freaked me out.  I had to leave her room and go cry in the hallway.  I didn't know what else to do. 

Tonight I finally got around to transferring some pictures from my camera to Kristi's laptop.  I had some pictures from Ashley's last soccer game.  I got some really sweet action shots of Ashley that I wanted to show Kristi. 
When I told her about them she looked like she knew what I was talking about and acted like she wanted to see them.  I got excited and was going to get the laptop when she started talking about something I couldn't understand.  When I asked her about the pictures again she said "what pictures?  Oh I'm so confused.  What am I supposed to do?" and she started talking about wanting to "go right now".  Sigh.  Thought I had her back for a moment.  I know, I know.  I need to let go; and I have...for the most part...but every now and then she appears very coherent and it's so nice to get those moments...just wish they would last...like another 40 years maybe.

Speaking of pictures, here is a picture of our weekend getaway about 3 weekends ago.  We received an anonymous gift of a 2 night stay at the downtown Grand Rapids JW Marriott.  It was the week leading up to this getaway weekend when Kristi's pain really began to intensify.  Even though Kristi was in a great deal of pain all weekend and spent most of it in bed, we did have a great time.  We had adjoining rooms which made it very convenient for having a "boys' room and girls' room" for the first night and the 2nd night Nathan and I had "movie night" in mom and dad's room.  After the movie I kicked Nathan out of course in exchange for Kristi.  :)  Anyway, here is a family picture I took as we were packing up to leave.

Thank you to the anonymous donors!


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Saturday, May 28, 2011: Progressing

Another noticeable decline in Kristi's connection with reality today.  Very little emotion when you speak with her.  Not many smiles today at all either.  When you talk to her she has a blank stare.  It's all a normal progression of the dying process but is hard to just sit and watch.  Kristi's parents and brother were here most of the day with me which helped make the day go faster...I also had a chance to take a break and go home for a bit this afternoon...that was very nice.

The nurse makes it sound like it could be a few more days...brutal.

Anyway, I thought I would share this note from Nathan's 5th grade teacher and class (with her permission):

"Dear Parents,

Today we presented Nathan with a prayer blanket. Each child spent time by the blanket in prayer for Nathan and his family. Then they tied a knot on the blanket to symbolize the prayer that was offered on the Rogalske's behalf. We then gathered as a whole class with Nathan and his blanket and prayed a special prayer over him. It was evident that Nathan was honored by our symbol of love and care for him. Please take a moment to view these pictures and see the Christian love that our students exhibit for each other. Then please pray a prayer for the Rogalske's as Kristi is nearing her heavenly homecoming."

What an amazing school!

Blessings.

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Friday, May 27, 2011: Fading and Bittersweet

Though the physical change in Kristi was less dramatic today, her level of consciousness is heartbreaking.  Remember that lit up face and great big heart warming smile I talked about yesterday...it's dimmed to little more than a slight flicker.  She still recognized me this morning, but it was a struggle for her to muster up even a very slight smile.  It broke my heart.  Sure, I know she is nearing the end, but nothing like reality kicking you right in the gut.  It literally took my breath away.  I felt alone and isolated.  "This is it" I thought to myself.  There's nothing I can do but watch. 

It's evening now and her parents left a while ago.  While they were here I went home to say good bye to the kids for the weekend (Kristi's sister is taking them).  After the kids and Lori left I just sat on the staircase for a while.  The silence was deafening.  As I walked around the house I saw Kristi in every room.  I just wandered around the house aimlessly...sobbing.  Kristi was such a big piece of my life puzzle.  She was the glue that held this family together.  I now will have to rely only on memories.  Fortunately, I have taken over 13,000 pictures since we've been married.  All of the photos pre-digital I have scanned and made into digital files.  Whenever you come over to our house you can always find at least one computer scrolling through the pictures (screen saver).  I love to watch them, but it does bring back a lot of memories. 

God will give us the strength to get through this, I have no doubt about that and Kristi will get her wish soon.  I am very excited for her on one hand, but can't help but be overwhelmingly sad on the other.  Bittersweet, that's what it is.

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Thursday, May 26, 2011: The Bravest Person I've Ever Met

How many of us could be (literally) on our death bed, in our final moments, each breath a struggle, every word nearly impossible to speak, be completely honest and say "I wish he'd beam me up already!"?  That's what Kristi said today...that's my girl!  She is the bravest, most courageous woman I know.

This girl is amazing.  She is so excited to get to heaven she is getting frustrated at waiting.  The other night she was chanting "take me now, take me now, take me now".  When I sit in the lounging area of our room sometimes I just stare at her.  She sleeps most of the time but when she wakes up and sees me, her face just lightens up, her eyes open as wide as they possibly can and she gets this great big smile.  Then she nods off again.  But for those 3 or 4 seconds my heart just melts. It doesn't matter if it's the first time of the day or the 100th time of the day...every time she smiles at me like it's the first time.  I will miss that smile the most. 

What keeps me going is how excited she gets when she talks about meeting Jesus face to face.  She is so ready to go and that brings some healing to the hole that will be left in our hearts.  I asked her today if she wanted me to post a prayer request on her behalf.  This is her prayer request:

"God, please take Kristi home to Jesus now; she is ready"

When I told Ashley this, she said behind a face drenched with a steady flow of tears, "then that's what we have to pray for, Dad".  I lost it.  Absolutely lost it.

Thank you, Ashley, for your courage, and for reminding us "old" people that it's not always about us, about what we want.  You are wise beyond your years.  I love you, Dad.

Good night.

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Wednesday, May 25, 2011: Still Peaceful

We brought Kristi to the Hospice House this afternoon to rest peacefully and that is what she is doing.  She looks so peaceful right now.  Sorry to those friends and family that wanted to visit with her but couldn't.  She went very quickly.  Hard to believe just 3 weeks ago she was attending soccer games, driving the kids to school, laughing, smiling, etc.  Just a little more than a week ago we were visiting with friends in the neighborhood street for over an hour.  And now we're down to her last hours.

This is a very tough time.  Thank you for all of the prayers...what an awesome display of Christian love you all have shown us.

Wednesday, May 25, 2011: Peaceful

Kristi's condition has turned very grave.  Her breathing has become very shallow and she is very weak.  Our Hospice nurse has said she is really down to her final few days, probably no more than 3. 

Kristi told our pastor tonight she is very peaceful and very ready to go; that brings a lot of comfort knowing where she is at emotionally and spiritually.  Please cover my family as well as Steve and Linda Kammeraad, Kevin (brother) and Stephanie Kammeraad, Lori Fox (sister) and their kids in prayer. 

Thank you so so so much.

Tuesday, May 24, 2011: A Better Morning

After about 3:00AM, Kristi slept about a 3 hour stretch.  This is the longest stretch she's had in quite a while...that felt good for both of us.  The day is off to a good start!

Tuesday, May 24, 2011: On the Decline

Kristi's condition continues to decline.  Her coherent moments are becoming less frequent and shorter in duration.  She is very confused and hallucinates often.  This is very difficult to watch.  She is up every 15-30 minutes at night to go to the bathroom.  Today she got a catheter in but she thinks she has to go so she gets up anyway.  She then goes to the bathroom and slips in and out of alertness while on the toilet...this can last up to 30-45 minutes. 

When she sees family her mind is still very much "with it", but then she is usually confused after they leave.  "Who was here today?" 

Very difficult.

Saturday, May 21, 2011: Update on Kristi

I haven't updated on Kristi's condition in a while because we had many family and friends we needed to talk to first.  This change came on very sudden.  3 weeks ago she was driving, picking the kids up after school, going to soccer games, having coffee with friends, etc. then out of nowhere, it seems, everything stopped.  The swelling in her feet became unbearable.  Her stomach has grown to what she describes as "7 months pregnant".  It is really unbelievable. 

She is pretty much in bed 24 hours a day.  She spends most of her time in our bedroom, but usually for a bit in the morning and in the evening she comes down to her hospital bed in the living room.  She is on a good amount of pain control medication (aka morphine) which makes her pretty incoherent and confused much of the day.  But, she still has her sense of humor and that cute little smile. 

Well, it's been an hour between putting everyone to bed and starting this so I'm going to go watch some meaningless TV.  I'll fill in more later.

Wednesday, May 18, 2011: New Beginnings

When I was younger I liked this song called "Closing Time" by a group named Semisonic.  There's a line in the song that I reflect on every time I hear the song: "every new beginning comes from some other beginning's end". 

Together you, myself, and Kristi have bravely endured this cancer journey for four and a half years; a journey that has brought so many highs and so many lows; a journey that has spread God's word to all 50 states and over 80 countries across the world.  Together, we have done this and have proven that good things can come from life's most challenging circumstances.  Together, we have demonstrated how God's love can shine even in the darkest of times.

Our journey together began on January 23, 2007 and continues on through today.  Like most journeys, however, this journey too is drawing to an end and a new journey will soon begin.  When the new journey begins only God knows. 

Today, we are faced with the reality that Kristi is going Home to be with Jesus soon.  Her health has deteriorated to a point that makes Hospice believe we are down to but a few short weeks. God's work here with Kristi is almost complete and so we will, again together, mourn for her passing but celebrate the legacy she is leaving behind. 

For Kristi, however, a new journey begins:  Kristi will soon be walking side by side with Jesus.  I can see it now:  Kristi will be President of His card stamping club!  Something urgent must have come up (in heaven) that requires many new cards to be stamped that has made God decide He would like her sooner rather than later.  So it is. 

The coming weeks will be very emotional as she begins to say 'good-bye' to many of her friends.  Kristi has influenced so many people over the years that makes saying 'see you later' (instead of 'good-bye') to each and every one impossible.  If you're hearing of this for the first time by reading it on the blog we are very sorry.  Please understand.  You know Kristi:  if she could she would be going around to everyone personally...even our international followers.  :)

As I said, the next few weeks will be very emotional as she will soon not be able to have a coherent conversation much longer as things progress.  For right now, she is coherent a few hours a day...and those hours we cherish.  No one knows what tomorrow brings so for now we just live day to day.  I'm hoping that one day soon Kristi can muster enough energy for one more post; she has wanted to but just can't get the strength or focus. 

In the meantime, please continue to cover her, myself and the kids, her parents, sister and brother, and all the family in prayer.  Many prayers will be needed.  Thank you all so much!

Friday, May 13, 2011: This will be hard...

I'm sorry for not keeping up to date; I know the silence must be difficult for those that follow our blog.

We are not ready to share everything at this time but it's important that I share this with you:  know that Kristi's health has taken a sudden turn for the worse.  But also be comforted by the fact that she is getting very good care at home right now.  She still has a lot of pain and is very confused, but she can still smile and laugh so that helps.  I will share more when we get her stabilized, but right now things are a whirlwind.

At this time we're asking that only immediate family visit.  As I said, Kristi is very confused with everything going on and visitors coming and going makes her very unsettled. 

Thanks for understanding and I'll share more when I know more...because I am also very confused with everything going on.

For now, please pray for comfort, peace, guidance, strength and patience for our family over the next few weeks.  Thank you.

Tuesday, May 10, 2011: Keep 'Em Coming

Please keep the prayers coming for Kristi.  She is still in a lot of pain and very uncomfortable all the time.  We're not quite sure what's happening at this point but what we do know is that she has a lot of pain and swelling.  Right now we are in need of many prayers.  Prayers for comfort for Kristi, understanding for the kids, and strength for me would be greatly appreciated. 

Perseverance.  We will persevere.

Sunday, May 8, 2011: Prayers

I don't want to go into a lot of details right now but please pray hard for Kristi.  She has been in an extreme amount of pain since last week and needs comfort.  Thank you!

Tuesday, May 3, 2011: New Furniture...

Normally one would be excited and waiting in anticipation of the delivery of a new piece of furniture. You would have spent hours shopping for it together, debating back and forth whether you should go with plaid or a solid color, extra soft cushions for comfort? or firm cushions for better support? do you match the carpet or do you match the paint on the walls? So many choices to make and quite fun actually…and the new arrangement of furniture that would ensue…!

But not so much fanfare with the piece of furniture we’re getting delivered today. Nope. Not this one. Today is a bittersweet day: today we get the hospice bed delivered. Bittersweet because the bed will help with Kristi’s swelling and pain, but bad at the same time because we’re getting a hospice bed delivered; bad because of what the bed represents. We will try to decorate the bed and make it as cheery as possible for the kids, but for me, it will be a reminder of what’s yet to come. The pain she has yet to endure. The buckets of tears that will be shed over this bed.

For now we just wait. Wait for that truck to pull up in the driveway to deliver the bed.

Thursday, April 28, 2011: Super Short Update

What a fast couple of days!  Basically both doctors appointments went well - they both thought I looked great!  We're going to make a few medication changes over the weekend to try to keep my pain managed . . . actually the goal is to get the medications to a place that I don't have any pain . . . . I think I like that goal :)

It was nice seeing Dr. VanderWoude  again and Dr. Phillips (the Hospice doctor) was very approachable, friendly and has my best interests as his first priority.  What we were expecting to be "downer, reality visits" were actually really good visits.  Yea God :)

I will update more another day . . . right now the only thing that sounds good is going to bed.  Thanks for the prayers!!

Monday, April 25, 2011: Resurrection

Resurrection.  That's a big word.  Four syllables.  I can still remember teaching Ashley how to spell the word "resurrection" in first grade.  It was a "bonus" word and I thought how in the world am I going to teach my tiny little girl this great big word. 

I had a brainstorm.  It is a big word but if you break it down it has a fun rhythm to it.  First we learned "res", then "urr", "ect", and "ion".  Before long she was chanting "res". . . "urr". . . "ect" . . ."ion".  And then just a few years later Nathan had the same thing when he was in first grade and he conquered that word just the same way his sister did!

Resurrection was a word we heard often in yesterdays sermon.  Not only is it a big word with lot of syllables and letters but it is a powerful word.   In the sermon we learned about the power that word can have in our lives.  I've looked up the definition for resurrection and there are so many different ways to define it but basically - Jesus died and rose from the dead - resurrection!.  It doesn't get more basic than that.  That is power.  And He lives in me.  That power lives within me.

God has been very "vocal" with me lately.  I've had devotional after devotional hit me right between the eyes.  Songs feel like they are being sung to me.  Bible verses just jump off the page.  Some days I feel like He is saying that I need to prepare myself for "reality".  Other days I feel like a miracle is coming and that I need to pray harder and bolder.   I'll be honest - I keep trying to "twist" what I am hearing to my liking - to try and make them "my" plans.

I have had a lot of swelling and pain recently.  I don't like pain. Pain makes my reality much more real.  And I don't like seeing my family watch me in pain.  I have an appointment with my oncologist this week and also with the Hospice doctor.  These will both be "reality" checks and I know the details that we will be given will be hard to hear.

I mentioned that my devotionals have been very personal lately.  Yesterday's spoke even louder and it was very hard for me to "hear".   Actually, I heard it loud and clear, it's the "accepting" part that I'm struggling with.  This devotion talked about genuine faith.   Genuine faith means we need to "hand our circumstances over to God allowing Him to work".  She referenced Psalm 37:5 "commit your way to the Lord; trust in him and he will do this".  He will never work until we commit.  Yikes.  How can He work out His plans for me when I'm still holding onto them?

I will end with a story the writer shared in the devotional from the same day - this is the part that I struggle with.  It is a letter that a young man wrote to an elderly mother who was extremely worried about the condition of her son.  He wrote "You are worrying too much about him.  Once you have prayed for him, as you have done, and committed him to God, you should not continue to be anxious.  If we truly have cast our burdens upon another, can they continue to pressure us?  If we carry them with us from the throne of grace, it is obvious we have not left them there. 

Yikes again.  It is obvious to me that I have not left everything with Him with regards to my life. I can't do that on my own though.  Which I guess brings me back to that big, long, powerful word . . . . resurrection.  Jesus rose from the dead. That's power.  He lives in me.  That power is in me through the Holy Spirit. 

Right now I picture a sky filled with bright colorful balloons.  They are all my hopes and dreams and prayers and fears and requests and I'm sending them up to God.  I want to let them all go.  All of them.  But I have a few strings and I've tied them to my finger.  They are tied on tightly. 

I also have a huge, huge, huge prayer network out there reading this update (if you've made it with me through this long one!!).  Right now I ask for prayers that I can let go of those last strings.  I'm not giving up . . . . I'm giving up control to the One who sees the whole picture and to the One who knows what is best for me.

Please also pray this prayer for Brian and the kids.  We are all at such different places in dealing with this.  No matter what - I want this time with my family to be centered around God and His plans for our family and that again, no matter what - it is all done for His glory.

For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are - yet was without sin.  let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.  Hebrews 4:15-16

Monday, April 18, 2011: Very Short Update

I talked to my nurse today and we've "tweaked" some medications.  I also started an antibiotic because I may have a bladder infection.  I've noticed some improvement already today with the swelling and pain.  I still have both but they are lessening and that means we're moving in the right direction.

Reality is still reality and it stinks.  But, less pain and bloating is a good thing.

Sunday, April 17, 2011: Just Swell

I wish I could say everything is just swell, but I'd be lying.  The swelling and abdominal cramping is extremely painful and is wearing on her.  She has been having difficulty getting out of bed, standing up or even walking short distances.  It's very difficult to watch.  I feel like I'm standing on the sidelines watching my wife slowly die and there's nothing I can do but watch.  Just watch.  Watching one of the most loving and gentle people you will ever get to know suffer. 

Today was especially difficult...it was our 18th wedding anniversary.  Without a miracle from God, our 18th and last...and that just plain sucks.  The day went by for the most part like any other we've had recently.  We didn't do anything special to celebrate.  No fancy hotel.  No fancy meal.  No fancy wine.  Nope.  Celebration would be bitter sweet.  Maybe later, just not today.

Tomorrow we'll be calling her oncologist to ask questions about the swelling.  We have heard of other cancer patients getting fluid drained (sometimes liters of fluid) so we want to ask.  And also ask her what's causing the swelling.  Is it normal?  Is it a side effect of one of her meds?  etc. 

Well, every one's in bed but me...time to wrap it up I guess.  Thanks for continued prayers.

Wednesday, April 13, 2011: Busy. Quiet. Still.

That sums up the past few weeks for us. We’ve been pretty busy living life; life seems to be pretty quiet right now and we’ve been quietly still as of late. As long as Kristi doesn’t overdo herself she’s been feeling OK. If you’ve seen her recently, yes, her face is swollen. We think it’s the steroids making her retain water. She has cut back on her steroids to half the dose - water retention is not uncommon with steroids.

She also has quite a bit of bloating in her stomach that at times can be extremely uncomfortable; this is the reason she walks around holding her stomach.

We enjoyed a nice trip to the Creation Museum (http://creationmuseum.org/) in Northern Kentucky over spring break. We had enough Mariott points to earn 2 free nights stay so we stayed at a nice hotel downtown Cincinnati. At the museum the kids even got to ride a camel…so all was good.

Like I said, all in all, pretty quiet.

Tuesday, March 29, 2011: Thank You Times One Thousand!

Blown away. Shock and awe. Amazed. Humbled. Blessed. Very blessed. All those describe how we felt Saturday night and how we feel right now. What an amazing night. Whether you prayed for the event, helped organize it, donated to it, worked at it, or came and experienced it – THANK YOU! Over 800 dinner plates were served and over a thousand attended! We don’t have any final numbers yet, but it looks like we will be able to pay off all of our medical debt accrued over the last 4+ years with maybe $2,000 left over. Praise God!! God was at work all night; every detail was covered. Somehow the food that was planned for 600 stretched far enough to feed over 800, the chess tournament that was in the school before our event ended 2 hours early (which allowed the team to get in and set everything up), the weather was awesome and the people flooded through the doors all night long! It was so amazing to experience.

Based on all the smiles we saw it looked like everyone was having a good time. The mood was very upbeat all night long considering what the event was for. The "event organizers" (like that?!) did an amazing job at fostering an atmosphere of positive energy. In reality, this event was put together because someone is dying from cancer. Someone that was told they have only 6 months to live. If a stranger happened to walk into Holland Christian Saturday night they would have never guessed that from the atmosphere that filled the school that night! There was so much going on and so many people to talk to that we never thought of it that way.  It was just amazing!

The list of people to thank for planning, organizing and helping is far too long to list. From my point of view this is what you did for my family: you created an evening that my kids will remember for the rest of their lives. You created a moment in time where my entire family felt “extra special”. This event created for my kids a tangible example of what faith, hope and love is all about. My kids will always remember what the rewards are for remaining part of a community. A community will come together in times of need. It demonstrated to my kids how to “love thy neighbor as thyself”. I could go on and on. My point is that this night created a memory for my family that will be everlasting, so thank you so so so much.

What can a guy say?!  All of you had a significant impact on our lives. 

Thank you.

Thank you.

Thank you.