No Words

I honestly for maybe the first time in my life have no words for what we have been going through and experiencing.  And I can never begin to adequately explain to you either!  It has been the most intense stress that I have ever experienced.   There have been times when I would find myself not breathing and I would literally tell myself to breathe.   For most of the time, I feel like I have walked around in a daze this week!  I literally have been physically ill and didn't get out of bed for about two days.  I know why I was sick but it is still very much a rarity for me!  It has not been fun for any of us!  Our six year old is totally stressed out!  Suffering from crippling anxiety at times!  Our fifteen year old is anxious as well but has the blessing of a counselor that has prepared her well for the upcoming week!  Our seventeen year old, well, I know he is struggling but he is one tough cookie!  He holds his feelings close!  And he is a rock for our entire family.  He and I have shared several conversations about being a rock all the time isn't necessarily a good thing.  We all have to feel and vent emotion and receive care for them!  If we never receive care, then eventually our emotional cups will overflow!!  And I just simply don't want emotional cups to overflow here!  It's never pretty!!

Sometimes it takes a village to raise a family.  And we are living examples of that!  I have needed help with laundry, with picking up my house, with errands, with meals, and even packing our suitcase tonight!  So grateful that God places people in your life at just the right time to love you well!  And we have been loved well this week!

We will pull out of here tomorrow afternoon/evening sometime.  I can not even begin to tell you how difficult this will be.  And that's because I can't really fathom how horrid that whole experience will be!  I know my children are in good hands this week!  They will be loved and cared for well.  But the heartache is horrible!  In the words of my six year old, I'm afraid you'll come back empty handed.  In other words, she is terrified her daddy is going to die!  And folks, I can tell her I do not expect that to happen but I can not look her in the eye and promise her that he won't!  And that...is killing my mama heart!  So please pray for us as we say goodbye tomorrow and leave our children here!  Pray for sweet Aunt Elaine who will be here caring for them!  Thankful for those that will be loving my family even while we are gone!

We have the privilege of a very special sweet friend going with us this week so Zine and I will not be alone!  Thankful for God convicting a heart to go bear the burden with us this week.  God's actually convicted several hearts to go with us.  But we feel the less people the better.  In huge amounts of stress, I am NOT a people person!  I need my one maybe two people but that's it!  So...we are super duper grateful for a friend going with us!  Now it does come with anxiety...I will say!  We're not used to being with people!  And we definitely don't know how to be cared for very well...we'd much rather do the caring!  And when someone says, this is all about you, what do you want... I feel my insides crawl.  We do not want this to be all about us!  We don't like that type of attention to say the least!  So God is definitely humbling our hearts in this process!  We are swallowing lots of pride in this process.  I'm afeared there is much more to swallow!

We will begin each day at 7:30 am.  The process should be completed around 3 pm each day.  These are going to be some long days!!  They have prepared us that Zine is going to feel very bad.  So couple that with his already decreased mobility, we are prepared for a very difficult week!  We will drive home on Friday after the treatment is over!  So we will be gone 5 nights!  I rarely am gone one night much less 5!!!  And then we will have to be very careful for awhile, because he will have literally no immune system.  His entire lymphatic system will be gone!

Even today, as we have talked and shared with our children, Zine said...no matter what this will be okay!  I don't know what the outcome will be, but I know that God is in this and He will work His will and His ways in our lives and because of that...it will be okay.  Now the girls in this house all argued with him over that statement!!  However, in reality we know that God is with us!  We are filled with some anxious thoughts.  We are very much dreading this process, but we are at peace and know we are doing what God desires for us to do!    So we walk forward, with brave faces and we get an opportunity to trust God deeper than many will ever get to experience!  Our children get to learn to exercise their faith in deeper ways that many ever do!  We would have never chosen this life.  And we would sure like for this cup to pass from us!  But I am confident that God is using these struggles to shape us to be more like Him!    And He is going to use this heartache in our lives to minister to others.  Doesn't make what we are going through worth it, but grateful that God will be able to use our lives in ways that we probably can't even imagine!

We ask that you pray for us this week.  As God prompts your heart, just utter prayers on our behalf.

I will try to post an update or two, but  make no promises.  The brain is just not functioning very well!

Here's the song Krisann and I have been listening to over and over again this week!  It says what our hearts feel.  We want some mountains moved, we want some water parted, and we would like answers as to why God chooses not to heal!  But even in those desperate places, we continue to cry out to Him and we continue to trust in Him!

Zine's Desire

A few days ago, Zine said, I really really want to do something fun with the kids before I have chemo!  And we discussed the importance of such event.  However, finding time to go and do something fun is near impossible.  Much less to say...going somewhere is just hard!  Plainly put hard!!!  However, this was something that needed to happen!  So, I went to work!!!  We typically do plan things for Sunday but since that was the ONLY day I could find over the next two weeks to do such, it had to be Sunday!!  So when Conner got off work yesterday, we left town.  Mind you, we NEVER EVER do things like this!  And I went way out of my comfort zone as well.  Conner didn't get off work until 4.  It was almost 4:45 when he got home.  He showered and we left home at 5:20.  I don't like to drive in the dark but off we went to Chattanooga!

We arrived in time to eat dinner together that evening.

 

  I won't say how many phone calls it took me on Friday to find a room!  But with a little help from a friend, it was finally found! The little things that makes traveling hard that most people don't even think about!  But needless to say, an accessible room, an extra air bed taken with us, and a little fun was had by all!

 Being away from home is just hard. It's harder for Zine to be independent.  I typically don't sleep well.  But there is something in it for kids, that makes things more special when you spend the night away!  So...we did!!

And then on Sunday, we took the kids to the Tennessee Aquarium.  Krisann has never been before.  Our older two have only gone once in their lives and Chloe doesn't even remember it!!  So it was a great family outing.  It was inside.  Wheelchairs moved around well!  And we did indeed have a great time.

                                   
After spending a whole day at the aquariums, we were feeling quite tired and hungry.  In a downtown area, do you know how hard it is to go to a restaurant and it be big enough for not one but two wheelchairs.  But can I say, the people at the itty bitty establishment we ate at were super duper nice and accommodating!  It truly was a blessing!

It was a nice meal together!  Much thanks to those workers who went right to work on accommodating my big clan!!  Not only were there two wheelchairs, but Krisann was crying.  She was SOOOO thirsty!  And the sweet hostess said, come on how about you go with me and we will fix you a drink.  She took Krisann with her to go get a drink while we waited for a table to be cleared and fixed for us where we could pull in wheelchairs.  Truly, truly a blessing to all of us they were!

The weekend came with many emotions to say the least.  There were definitely some thoughts and emotions we all struggled with.  But I am grateful Zine had the desire to do something fun with his kids!  And I'm grateful to have got to see them enjoy each other!  And am grateful to have had this weekend to share together as a family!  Life is full of struggles, but it's super nice to take 24 hours and to put your focus on something other than your struggle!

But never fear, it didn't take long before the struggle was in our face again!

But this time it was a serious conversation in a room other than the red room!  This was definitely a photo moment!!  This NEVER happens either!  All serious conversations are had in the red room.  As a matter of fact, if you know the inside scoop you will understand, in the middle of this discussion Krisann came to the red room with a flyswat!!  LOL!!

Zine told me I could not post a picture of him with red eyes.  But...I don't think you can tell his eyes are red!!  You might can tell mine had been leaky!  But he managed to cover his red eyes very well! 

Now...after all that...I need about a week to recover!  It's hard work to be away!  But with as tired as I am....I am still grateful to just take the past 24 hours to focus on family without distractions!

And despite MS, despite the struggles it brings, despite the dread of upcoming chemo, despite the serious conversations...this guy...

I absolutely adore!  And I am blessed to be able to walk this road with him!  Sure wish I could take the pain and heartache away, but I will gladly bear it with this guy!!  Wouldn't want any other woman in the world to walk this road with him!  So I'm thankful that I get to be the one to endure and bear this struggle of MS and all it brings!

Chemo Changes

As I said in my previous post, our lives are always changing.  And indeed they are!

Our local oncologist cannot get the drug that Zine needs in the dosage that is needed.  So...we are unable to get our chemo here in Huntsville!  We will have to travel and spend a week in Cullman.  Which means our chemo is now being pushed back while we get that all set up there.  We are MORE than bummed about this.  We both hate this so much that is has caused us to rethink whether we even want to do the stupid chemo!  Yep, stupid chemo...that's what I called it!  I guess if it were to bring about a miraculous healing then I would say is wasn't stupid after all!!  But for now...it's stupid chemo!  It complicates our lives even further.  It is making something, that is going to be difficult anyway, much more difficult and complicated!  And neither of us are totally confident in this next step now...but feel we have no option!  So...we are about to do yet again, another REALLY REALLY hard thing.  And we are walking into it with very unsettled feelings!

We have been to Cullman this morning and met with nurse and signed our life away.  In other words, we said, "Yes I know this chemo can kill me.  Yes I know this chemo can do horrible things to my body.  Yes I know" and I sign here on this line anyway.  For some reason....that just doesn't sound very smart to me!

This is a picture that Chloe made a year or so ago as she read through her Bible in a year.  Inside these letters don't fear are Scripture references that mentioned do not fear.  We all know that the movie Facing Your Giants said the Bible said it 365 times...once for each day of the year.  Upon Chloe's interpretation...she thinks you will find don't fear or similar words way more than 365 times.  When we are educated on this chemo, fear arises.  Even last night as I sat in front of my computer and read all the information about this chemo again...it creates fear!  Horrid fear.  So I was reminded of her picture and the many scriptures that say do not be afraid for the Lord God is with you!

Our six year old has been able to communicate to me over and over again how she is afraid her daddy is going to die!  And what do I say...I am SOOOO sad that you get to grow up with that fear!    But what I remind her and myself, God will never leave us nor forsake us. 

Fear resides in each of our hearts!

Sadness overwhelms at times.

Stress is exceptionally high!

But in these moments, we are family!  We stick together or at least try to!!  :-)  We grieve with one another.  We have lots of talks with each other.  We pray with one another!  And sometime we fuss over stupid things with one another.  Five grieving people in one house at different places in our grief and we are supposed to all like each other and get along...really??  But the good news is 90% of the time we do!!   

Also in these moments, we wrestle in our faith but our faith is being refined and strengthened each day.  Our faith is also strong in these moments!  Never once has being angry at God to a point of turning our back and telling Him we want nothing to do with Him ever entered our minds!  He is our only hope!!  We have cried out to Him for release, for healing.  We have asked why the desires of our hearts are not answered.  We have had moments of just not wanting Him to love us!  We have told Him we don't always see His plan but we are learning to trust Him.  We don't always do things perfectly.  We make mistakes!  But we do our best and ask God to shower His grace on the rest!

Pray for us as we wait on a new date!  Turmoil is the key word around here.  And some days it is worse than others.  So pray that this date would come soon!  I am bold enough to pray that by some miracle we would continue on with our Monday date.  That's a BIG request, but I'm not afraid to pray  for that!  However, we do want His timing in this.  But we want the turmoil it has caused our family to disappear.  And I'm not sure it will disappear until this is behind us.  So just pray!  

Chemo Again

I hesitate to write this post because in our world things are always changing!!  We were expecting chemo in about 6 to 8 weeks.  However, it appears at the current moment, that Zine will be getting chemo in 1 week!!!!  The blood procedure that we just did...well...it didn't work.  As a matter of fact, it has just caused his bone marrow to kick into high gear.  It recognized that things weren't right so it began making more of what we didn't necessarily want it to.

We visited with neurologist office and oncologist office both at great length on Thursday and Friday. There is some work to be done in getting billing and insurance worked out and a bit of work in obtaining this rarely used chemo.  If those two both work out as planned, then on Monday the 18th Zine will begin a 5 day process of chemo.  Although the actual chemo process only takes 5 days, the results of the chemo will be months of recovery.  In 5 days, it will totally wipe out his entire lymphatic system.

The doctors have prepped us that he is going to feel pretty horrid in this week long process.  He will begin a regiment of meds to help prevent him catching viral infections, fungus, and a whole slate of different antibiotics.  And that regiment will continue for four months afterwards...maybe longer.  There are risks of damage to other organs.  Thyroids are often harmed in this process.  It can cause kidney disease to arise.  These are two things that will be checked regularly for 4 years afterwards!  This chemo will definitely be life changing for awhile.  But the greatest risk I think we will encounter other than the chemo itself will be the infections that can arise in this process.

There are many many more details that we could share, but we won't!  It's going to be a rough few weeks I'm afraid.

We have had long talks with our children.  They understand clearly what is about to happen.  Even our little one has struggled immensely!  I will save some of those details for another blog post.

We do ask that you pray that the details will all work out this week.   And not only will they work out, but that they would work out without added stress or complications in the details.  Pray that we will be able to get this chemo right here in Huntsville.  That is the plan and the goal at the current moment.  But once again, details have to work out.  Pray for all of us.  One moment we are good.  The next moment someone may be completely zoned out or  crying or angry or overwhelmed.   Of course, Zine is dreading it!    But he just does what needs to be done.  Pray for me--Karen. I get the heartache of watching my husband go through all this.  I get the blessing of being able to care for him in this process...and it is a blessing!  I also get the heartache of watching and being apart of our kids struggle in these places as well.  Some moments, I definitely find overwhelming.  As you may or maybe you can't even imagine, the emotional heartache is great right now.

But I read a quote in a devotional this morning that spoke to me.  I have begged God to remove this storm in our life.  And I have struggled with why He hasn't at times.  But today God changed my prayer.  At least for today!!  Instead of God will you take this storm away...I prayed God will you still us in this storm.  And that is the prayer I will be praying in the days to come.

Finally....central line is leaving

Tomorrow is the day...the central line is being removed.  If you've ever wondered what a central line looks like...here you go!

Poor guy!  On one side of his chest he has his port.  On the other side of his chest he has been sporting this massive central line for quite some time!  Then right below his belly button he has more tubes!!  It's been hard to know where I can touch him at!  Don't want to mess anything up!  And don't want to hurt him!!  So very careful I have been!

Not to mention, this central line can not get wet!  So showering has definitely not been as easy.  Wait...showering is NEVER easy!  But...it's even harder lately!

So when our procedure time of 12 noon rolls around tomorrow, I know this guy is going to be so grateful to get this central line removed!  But folks, he's complained very little about this!  We all know...if I had this central line you would have ALL heard me complain by now!  But Zine has endured so patiently and so quietly without complaints!

We did encounter some side effects from the treatment he had done.  Your blood is just not made to be filtered through machines all the time!  So...he not only has a port, a central line, and a permanent cath...his feet and legs have been huge since we have gone through this procedure.  Like...his feet honestly have looked like if I touched them they would break open and start leaking water.

We have increased lasix medication.  Which means when that happened, then potassium had to be increased.  It's like this never ending cycle that sometimes happens.  But once again, he never complains!  So...I do that for him!!  Isn't that the loving wife to do that for him?  My feet have unfortunately looked like this before!!  I have had the blessing of taking lasix myself...thanks to the child named Krisann!!  And this hurts!!!!  I know for certain!!

I know so many of you think we do so well.  And you think we are always happy despite what life has given us!  Well...that is not always the case.  New Years is Zine's least favorite holiday!  It has now surpassed halloween.  So we all know that is bad!

And here we are...putting fake smiles on our face as we ring in the new year!  There was not a darn thing fun about New Years Eve!  We were exhausted.  We were tired.  We rang in the new year because it does take two hours to get all the nighttime routine done.  Not because we were out partying!  And the next few days were even worse than this.  It got to where we couldn't put the fake smiles on.  We just let the tears roll.  New years is a time of great hope and excitement for many people.  We on the other hand look at New Years and see not much hope!  And definitely no excitement.  We see chemo, we see heart ache, we see trials, and we struggle!  Tears have been very common place in his eyes and mine these past few days!

We love our bathroom!  It's like my favorite color...red!  And for those of you that say life happens in your family room or in your living room...somehow, my bathroom is where life happens most of the time.  It's the place where tears are shed.  It's the place where discussions are had.  But it is also a place where love is shared.  Not just between us.  But between us and our kids.  Less than 10 minutes ago, Conner is in the bathroom with Zine and there is a friendly conversation going on between the two of them!  But...when it takes two hours to do your nighttime routine...sometimes company is simply in order!!  And now you will all know that when we post a picture with a red background...you'll know we took it in our bathroom!  LOL!!

Praying for a smooth procedure Wednesday as the central line comes out!  Praying for God in some miraculous way to give us a hope!  A hope that He does desire to prosper us and not to harm us.  A hope that He has to give us a future!  And praying that we would learn to be content even if that future includes MS!

For the first time today, I had someone ask me if my husband was going to make it.  It totally caught me off guard!  I wanted to text back...nope he's dying a slow horrible death!  But instead, I haven't said anything...yet!  Sometimes time is just needed before I respond!  I really do want Jesus to leak out of me and that people don't see me respond in frustration or anger or bitterness!  But I think Zine and I both need a renewed spirit and a renewed mind!  We need our hope and joy restored!  And I know those things could happen in the middle of MS!  I know God could do that!  And I know that God could heal MS!  And that is my utmost prayer!  But in the meantime while we wait on that, it would be nice to experience hope, joy, renewed minds and renewed spirits!