Monday, February 28, 2011

Monday, February 28, 2011: Surreal

I was talking with a friend recently and we were both commenting on how surreal this all is.  I mean, Kristi is right here.  Here and now.  Saturday she went to a play with the kids then later to a movie with her sister and her kids.  Sunday we went to church and after church just came home and vegg'ed out..."normalness".  How can it be?!  Just how can it be?

That's from the outside looking in.  Kristi is still pretty uncomfortable.  She is "managing" her pain.  That means she has been doing a pretty decent job at mixing up the Vicodin and the morphine drops.  That's anything but "normal".  As long as she keeps herself drugged she can tolerate the pain.  That doesn't mean the pain is little or subtle, just means she has managed to tolerate it.  She's pretty weak now, maneuvering around via Breezy (her wheelchair).  She's getting used to that as well...and finding which stores are handicap friendly and which are not.  So far, Kohl's of Holland loses the "handicap friendly" competition.  Aisles are too skinny! 

Kristi was going to try to get an update in tonight but she didn't have it in her.  The days usually take their toll on her by evening.  She was pretty tired tonight, and admittedly "grumpy".  We don't mind a "grumpy" mom though.  She has every right to be grumpy...we love her any way she is.

Anyway, hopefully Kristi will have it in her to update soon.

And again we just want to say THANK YOU to everyone.  Everyone is helping out in their own way and we appreciate it all.  Thank you so much!  God has blessed us with many great friends and family!

Saturday, February 19, 2011

Saturday, February 19, 2011: Doing Better

We've made some medication adjustments and I have been able to control my pain - yea!  Emotionally though I am all over the place.  I met with my "chemo club" this morning (the most awesome group of cancer survivors ever!).  I wanted to freeze time when I was with them.  We laughed so hard we cried.  A few hours later though I was in bed crying but this time it wasn't from laughing.  To be honest - there are moments where I just want to turn in my "resignation".   This letting go of things is sooooooo hard.  Gut wrenching hard.  I say I'm not giving up but honestly there are moments when I want to. 

This afternoon I caught up on my devotionals from the book Streams in the Desert and then read the bible.  It is amazing how quickly that restores me soul.  It gives me purpose and strength.  I don't know what God has planned for me but I do know if I spend my time hiding in bed with the covers over my head I'm not going to be prepared for it.  I've got quite a spiritual battle going on in my mind.  If God is up to something big then I know Satan is up to no good.  He'd like nothing better than for me to give up and hide under the covers. 

I spend too much time reading emails, blogs and on facebook.  It is so easy to do and I end up feeling worn out afterwards.  After I read the bible I am filled up.  Why is is so hard to make the right choice of reading material?  And how I spend my time? 

I would love prayers for discipline on how I use my time.  Prayers of praise for less pain and also prayers for wisdom with medication decisions.  Prayers for patience for Brian - I can't imagine how difficult it must be for him.  We have been blessed with a huge outpouring of support in more ways than I can list but it ultimately all lands on him - all the decisions, all the choices, everything.  The kids are doing very well all things considered.  Ashley got hit pretty hard with a flu bug today - pray that this bug flies away fast and skips the rest of us on it's way out the door!

I'll end with a part of a devotion I read today:

We will laugh at seemingly impossible situations while we watch with delight to see how God is going to open a path through our Red Sea.  It is in these places of severe testing, with no human way out of our difficulty, that our faith grows and is strengthened. 

Friday, February 18, 2011

Friday, February 18, 2011: Not Great

I've been waiting to update because I was hoping that Kristi would have been feeling better by now.  Her morphine drops just don't seem to be working as effectively as the Vicodin was.  Last night she took some Vicodin again to see if that would help with her pain.  She still has a considerable amount of pain in her back and is extremely fatigued 24/7.  She's been tossing and turning at night because she is so uncomfortable.  Please keep your prayers coming for her back pain.  She is miserable and it's so hard to watch her in so much pain.  I'll update this weekend and hopefully have better news.  Thanks so much!

Monday, February 14, 2011

Monday, February 14, 2011: Valentine's Day

I had a blog entry all typed up but it was even too depressing for me to I deleted it.  I think you get the idea.  Valentine's Day.  Another day that goes on the list of "lasts".  I'll just leave it at that.  Lots of emotions pouring out over the keyboard tonight.  Oh well, Valentine's Day was never a big deal for us anyway.  In the (almost) 18 years of marriage I think we celebrated Valentine's Day the first 2 years.  Then we woke up and recognized the day for what it was - a brilliant marketing scam by a few huge corporations.  Don't even get me started on that other "holiday" - sweetest day.  Give me a break. 

Well, on that note, happy Valentine's Day.

Sunday, February 13, 2011

Sunday, February 13, 2011: The 3rd and last and hardest to swallow bite

So why Hospice? Why now? Well, Kristi asked Dr. VanderWoude "how long?". Dr. VanderWoude shared her opinion with us but I still haven't come to grips with it. Maybe I'm in denial, but I just don't buy it. She said 6 months but I can't believe that. 6 months doesn't work for us. That would fall right between Ashley and Nathan's birthdays and well, that just ain't gunna work.

Honestly, it's hard for me to come to grips with any amount of time. I can still talk with her, laugh with her, touch her, see her, smell her, make her mad, make her giggle, heck, we even went on a double date last night! So 6 months?! Nope. Say what you want, just don't say 6 months. But what about 9 months? a year? 15 months? Frankly, all of those options suck. If this were multiple choice I'd be looking for the D) None of the above.

But, taking her advice, we did get things started with Hospice. And can I just say, what a wonderful organization! When people hear of Hospice, they generally associate them with "end of life". They are so much more! We met with 2 nurses Thursday for more of a "welcome to Hospice" type visit. Then on Friday we met our nurse who will be visiting weekly. All of them were just wonderful. Very friendly, compassionate, good Christian people. They presented everything very eloquently, considering what they were sharing with us after all. 4 hours after they were here Kristi's wheelchair showed up. If you hear or read us referring to "Breezy", that's Kristi's wheelchair's name. Monogrammed on the back in yellow letters. So Breezy it is!

Speaking of morphine, Kristi is now on a low dose of morphine to try to mask her pain. We're still trying to get the dosage figured out yet so a couple of painful days for her. Kristi, the most straight-laced of all teenagers, the most angelic mother and most inspirational woman to many, is 'doing' morphine. Talk about irony.

After Dr. WanderWoude's visit last week we just came home and sat on the couch. The kids were all at school so the house was very still. It was a bit surreal. We've just been told my wife has 6 months to live, we're sitting on the couch looking through funeral home information, and Kristi says "I think I want the ala carte package." I said "uh uh, no way. There is not a funeral package called 'ala carte'." Yup, there is. We start laughing. Laughing. What the heck, if you can't laugh in a situation like this you'll go insane. "I'll take one of these, 2 of those thingies, 4 of that, and what the heck, throw in some of those for good measure." Wow, talk about a full service funeral home!

Kristi has chosen the funeral home in which she would like to...use? (not sure what to say there). Use? Doesn't sound right. We're not sharing that at this point because that seems so final. Just not willing to call it 'game over'. We still have fight. I'm not going to say she's stubborn (that would be on the list of things not to say to your wife), but she is just too damn stubborn to give up! She will fight this cancer with every ounce of her 105 pounds! (that makes up for the stubborn comment).

My intent with this post was to share the news; but share it in a way where you, the reader, don't lose hope. We're not giving up, and we'll need your prayers now more than ever. As bitter as it may taste, it's reality. Yes, we cried when we heard the news and I'm sure some of you may be crying. It's OK to cry. Well, unless you're in a restaurant full of construction workers, then you pretend you got some pepper in your eyes. But other than that one exception, it's OK to cry. We all need to cry. If you can't cry during a time like this than you must already be dead. So cry with us. Be mad with us. It's all good. must also laugh with us. Promise us not to stop laughing with us.

These next few weeks and months are going to be very challenging for the entire family. As we prepare for having a hospital bed in our living room eventually, I'm scrambling now to finish our basement that flooded nearly 2 years ago. Well, not just "me", I have the help of many many wonderful friends. I'm sure we'll get this basement done in no time! Then the kids can finally have their basement back...and we can have someplace to send them to when we want snuggle time on the couch! :)

We have shared this news with the kids. Of course they took it hard but rebounded as usual. I'm sure as Kristi gets worse it will sink in more for the kids. Right now Kristi seems pretty 'normal' so it's hard for the kids to grasp what's going on. So we are enjoying these days as much as we can.

Kristi is having a very difficult time with her senses. She is becoming very sensory sensitive. Noise, light, crowded or tight spaces, and even people just being close to her makes her very anxious; anxious to the point of nausea. Her blood counts are also very low and will continue to drop so she is very susceptible to catching any airborne illnesses.

So keeping that context in mind, I'll end with this...if you see her at school, at church, in the store or wherever, please refrain from getting too close. A gentle rub on the shoulder will work just great in the place of a hug. Please, no hugs! There are no exceptions. I know, I know. Easier said than done. She is just so stinking adorable, but you have to restrain yourself. She will also be avoiding any skin to skin contact as much as possible. So if she doesn't return a hand shake please don't be offended. Please help us by not attempting any hugs or hand shakes. We need to all work together to keep her as healthy as possible. The last thing she needs is a respiratory infection.

I think that was my longest post. Sorry to be so long, but how do you share information like this and not be?! Thanks for hanging in there and reading it all (assuming you're still with me). :) We'll keep you posted as things come up. In the meantime, have a blessed week and please keep our family in your never-ceasing and always felt prayers.

Thursday, February 10, 2011

Thursday, February 10, 2011: A Big, Bitter, Nasty Bite

Time for another "bite" of the elephant.  This one is a big one.  This is the kind of bite that you know is too big but you stuff it in your mouth anyway.  It's so huge that you can't even attempt to chew it without fear of it falling out of your mouth.  And yet at the same time it is so bitter you want nothing more than to spit it back out.

This bite is Hospice.  They are coming today for our initial appointment.  I knew this day would eventually come but I didn't think it would be here so soon.  It's a big, bitter, nasty bite but it's time to take this bite.  Underneath the bitterness though there is sweetness.  That sweetness is that God is in control and He is very clearly guiding our path right now. 

We have been getting and I'm sure will continue to receive a lot of phone calls and emails.  I know this stinks and it is hard and it is so difficult to grasp.  I know that you all want to fix this and make it go away.  I know that there are alternative therapies and other options out there.   We are not quitting or giving up ~ we are letting go and letting God.  I don't know what His plans are for me but I do know He's up to something good.  It is a moment by moment struggle for me to just let go but God has made it crystal clear to me that it is time for me to "be still".  There is a constant battle going on inside my mind right now but the two words that come through the most often are "be still".   

The LORD will fight for you; you need only to be still.  Exodus 14:14

Be still, and know that I am God".  Psalm 46:10

Being still is physically and emotionally exhausting.  I wish I had the energy to visit with people but right now simply being still is all I can focus on and is all that God wants me to focus on.  Please don't be offended by the "no visitors" sign on our front door or if I am not able to return your phone call or email right away.  So many things are crying out for my attention right now but God is telling me to focus on one thing . . .

 As Jesus and his disciples were on their way, he came to a village where a woman named Martha opened her home to him.  She had a sister called Mary, who sat at the Lord’s feet listening to what he said.  But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!”

“Martha, Martha,” the Lord answered, “you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.” Luke 10:38-42 

Wednesday, February 9, 2011

Wednesday, February 9,2011: How Do You Eat An Elephant?

Have you ever heard the question - how do you eat an elephant?  In case you haven't, the answer is "one bite at a time". 

We received some difficult news this morning at my doctor's appointment that we are still processing. 

So now you're thinking what does eating an elephant have to do with processing bad news?  It's the answer "one bite at a time".  That is how we are processing the bad news - one bite at a time. 

This is also how we will share the news.  Tonight's "bite" is that we have decided to stop chemo treatments.  We feel very peaceful about this decision.  We are shedding a lot of tears and struggling a great deal with the things that we need to do next but underneath all of it, we have peace.

The LORD will fight for you; you need only to be still.   Exodus 14:14

Friday, February 4, 2011

Friday, February 4, 2011: Let Go and Let God

Proverbs 3:5-6 is still running through my mind.   Specifically verse six and even more specifically ~ the word "acknowledge".  It seems like it should be a simple word but I'm having a hard time trying to understand what God wants me to take away from this verse.  Here are a few definitions of the word acknowledge:  to admit the existence, reality, or truth of ~ to recognize as being valid ~ to express recognition of ~ to express thanks or gratitude for.  Hmmm, it is pretty simple - God, you are real, you are the truth, you are everything and there isn't a word that exists that could express my gratitude.  Why is it so easy for me to type this and blog about this but so hard to talk about in day to day conversations?

Here are a couple different translations of verse six:  In all your ways acknowledge Him (NASB) ~ In all your ways submit to Him (NIV) ~Listen for God's voice in everything you do, everywhere you go (The Message) ~In all your ways know, recognize, and acknowledge Him (Amplified Bible). Always let him lead you, and he will clear the road for you to follow. (Contemporary English Version).  All different translations that all come back to the same thing . . . "let go and let God".

God I trust you with every ounce of my being.  I don't want to live this life you have given me by leaning on my own limited understanding.  I want to acknowledge you first in everything I do (but I am failing miserably - please help me).  I know that is the only way I can stay on the path that you have carved out for me.  Proverbs 3:5-6 . . . . translation "me"

Wednesday, February 2, 2011

Wednesday, February 2, 2011: Acknowledging Him

This morning I woke up with Proverbs 3:5-6 running through my head - "Trust in the Lord with all your heart and do not lean not on your own understanding.  In all your ways acknowledge Him and He will make your paths straight."  I was encouraged by this and thought it was a great way to start the day.  And then I got out of bed . . . .

The first thing I saw was snow.  Lots and lots of snow.  Brian was planning on driving us to the doctors appointment so I wasn't worried.  He has a Jeep that can get through anything.  Next I noticed that we had a voice mail from the doctors office.  Rut-roh.  They were just checking to see if we were planning on coming in today and to give them a call so I did.  Well, the doctor wasn't able to make it in today sooooooo, we rescheduled for next week Wednesday. 

I wasn't very happy but I had my "phone voice" on (as my dear sweet husband pointed out) and was pleasant to her.  Then I hung up the phone.  No more Mr. Nice Guy.  First thing I did was ream Brian for making fun of my "phone voice".  Yes, I know I have one . . . deal with it and DON'T MOCK ME or you will suffer the consequences (silent treatment, evil eye, random unexplained psychotic episodes aimed at him or all of the above).

Unfortunately Ashley had the bad timing of walking in the room after I was done yelling at Brian (for the moment).  And for those of you that are shaking your head saying "there is no way she yells" . . . sorry to burst that little bubble but not only do I yell but I push buttons, have a sarcastic streak like you wouldn't believe and well, let's just say I can be very unpleasant at times .  Why is it that when we are mad and frustrated we take it out on the innocent family members who have the unfortunate timing of standing in front of us when we are ready to blow? 

Where was I?  Oh yes, Ashley walked in the room and since I was mad, frustrated and not feeling well I decided that I should throw some grumpiness at her too.  I got a "look" from Brian and I believe he even did a "zip it" motion to suggest that I stop talking.  So, that's what I did - I stopped talking, turned on my heel, stomped upstairs to my bedroom.  How dare he?  How dare she?  How dare they?  I am having so much pain and bloating and yucky symptoms.  I have a list longer than my arm of questions I wanted to ask the doctor - how can she not be in today?  Now what??  What do I do?

I sat and watched the snow fall.  I thought about all the questions I had lined up to ask the doctor and wondered why I wouldn't get that chance today.  Then I heard it again - "trust in the Lord with all your heart and lean not on your own understanding".  I wasn't very trusting this morning.  I was leaning completely on my own understanding - the understanding that I still have pain, I am still scared, I am still frustrated and am still so lost.  Why am I leaning on that nonsense??

The second part of the verse is "in all your ways acknowledge Him and He will make your paths straight".  My paths are so crooked right now.  They are winding with dead ends and wrong turns - I am physically and emotionally exhausted.  I have no where else to go and nothing else to do so right now I am "letting go".  I'm not "giving up".  There is a difference.  I am acknowledging God and will try to do that in all my ways.  This is how my path will become straight.  That is all I want right now.  A straight path right to Him.