With Hope

Jeff entered into the arms of Jesus yesterday at 2:20 pm.  We will miss him terribly, but rejoice in knowing he is whole and no longer in any pain.  And we have the blessed hope that we will be reunited with him again one day in Heaven because he knew Jesus as his Savior.

Prayers Needed

From Jeff’s Caringbridge site:

On Monday, Jeff was extremely agitated.  He had been awake since 5 am on Sunday with no naps, very restless and having trouble finishing sentences.  The meds we had on hand were not able to relax his state of mind at all, so the doctor called in Thorazine.  He finally fell asleep after 8 pm on Monday.  He's been unable to really communicate since then. He cannot swallow without choking and all the fluid his body was retaining is going to his lungs which makes his breathing sound awful. 

The doctor came to see him yesterday and told us it won't be long now.  We are giving his medications through two ports that are just under his skin.  And he has a patch to help dry up some of the excess fluid in his lungs  I know you probably have questions that I haven't thought to address here.  I apologize for that.  It's so hard to know how much information is too much or not enough.

We know he can still hear us, as his eyes flutter when we talk.  He smiles when we say "I love you."  So please feel free to continue writing messages to him, and I will read them.

 
We declared last night to be our "Christmas Eve."  One of Jeff's family's traditions growing up was to open a gift on Christmas Eve.  I am a purist and always thought we should wait until Christmas morning. (Partly because I'm one of those silly people who is still wrapping after the kids go to bed on Christmas Eve.)  Last year, I finally gave in and we announced the beginning of the "One-gift-on-Christmas-Eve" tradition.  When I told Jeff's doctor how much Henry was hoping Daddy would make it until Christmas, he said "Christmas is a season, not just a day."  So when Henry asked again if Daddy would make it until Christmas, I decided we should just make last night our "Christmas Eve."  And don't you know, they got two gifts out of it instead of one. :)

I know there's no good time to lose a loved one, but Christmas seems to be an especially hard time for this to be happening.  Please pray for a swift and peaceful passing.  And continue to pray for our family as we make our way through this unfamiliar territory.

Reinforcements

It’s been a few weeks ago, now, that I felt like I just couldn’t handle this situation anymore.  It was right about the time Jeff had been battling a cold for several days and then I caught it, too.  I was so exhausted and sick.  He was bed-bound.  I began feeling angry and resentful.  Like if I got the chance, I’d be really tempted to get in my car and drive for a very long time. 

I reasoned with myself, that driving off would be a really pointless move. Even if I could selfishly get past my conscience,  I wouldn’t get any further than pulling my first kid out of school before I’d have to scrap the plan.  Reason for Early Dismissal – “We’re running away.”  Yep, pretty sure that wouldn’t fly with the staff as a valid excuse.  That gave me a good chuckle, and the temptation was over pretty quickly.  But the fatigue and frustration were still very much there.

I’m not sure if Jeff’s mom sensed my desperation, or if the Holy Spirit just whispered to her “It’s time.”  But the next weekend, she moved in to help take care of Jeff.  She is an independent technology consultant which means she can do her job from anywhere there is quick access to an airport.  Mom can’t be here all the time, of course:  she does travel for work.  But when she is here, she takes the night shift so that I can sleep. 

Some friends and neighbors have also been helping out at night when his mom is out of town.  And several have come during the day to sit with Jeff so that I can do errands, take kids to the doctor/dentist, etc.   Jeff’s sister came for a weekend to help out, too.

I haven’t even mentioned the meals.   Several ladies have been signing up to bring meals throughout the week.  It has been such a relief to not have to worry about cooking dinner all the time.  I feel like I’m doing pretty well if I can keep up with the laundry and taking care of Jeff and the kids, so dinner is a very welcome blessing.

And then there’s the yard work and maintenance projects.  One couple has taken on the regular mowing.  Other former patients and their families & friends have come to trim, weed, rake and cut down a tree.  One friend is on groundhog duty.  (I think we’ve gotten them all now.)  The outside faucets are all winterized, the play set and fence are stained.  When I write it all down, it overwhelms me the way people have offered to help.

So all that is to say that I’m grateful.  God hasn’t chosen to intervene and heal as we had first hoped and prayed.  But what He has done is that He’s made it very evident that He cares about the details.  That He will not leave us.  And just as the Bible promises, His strength is made perfect in weakness.  It wasn’t God’s plan for me to do this care-giving alone.  But He allowed me to start feeling pretty weak so that I’d be in the right frame of mind to accept help just when we needed it most. 

He knows me so well.

Eagles’ Wings

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.  --Isaiah 40:31

Juvenile Bald Eagle at Nimisila Reservoir

I love that verse—such a comforting promise to cling to in hard times.

For His Glory

I find myself needing to apologize yet again for allowing so much time to pass between posts.  I finally figured out how to have Live Writer (the program I use for blogging) on more than one computer since I don’t spend much time in the office anymore. 

I wanted to thank you all for your prayers,  for your understanding, for your encouragement.  Some posted comments here, and some sent e-mails, some phoned; but all of you were so sweet and gentle in reminding me of God’s goodness and giving me permission to be human.  I love each of you for that.

My pace through the Bible has grown very slow.  I have always read at night.  It’s the only time the house is completely quiet, and I usually am relaxed and ready to learn.  I admit there have been nights when I’ve fallen asleep before I finished a chapter.  I do a fair amount of re-reading.  But that’s not such a bad thing because sometimes reading a passage twice really helps me get it. 

I’m in the book of John currently.  In Chapter 9, Jesus heals a blind man.  It’s a familiar story to me, and I must have fallen asleep somewhere around the part where the Pharisees put the man and his parents on trial to hear testimony about who healed him and how.  So the next night I read it again.  And this time, the part that jumped out at me was the first few verses.

And as [Jesus] passed by, he saw a man which was blind from [his] birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.  (John 9:1-3)

Have you ever been facing something really hard and wondered “What did I do that God needed to punish me like this?”  I know I have examined my heart each time Jeff’s leukemia showed up.  And when I came to the conclusion that this cancer isn’t punishment for something I did or he did, I started to wonder if God is trying to get someone else’s attention by punishing us for their wayward lifestyle.  (I realize it sounds crazy.  I’m not implying it’s a rational line of thought, it just happens to be a common thought process among those who suffer and those watching someone suffer.)  

Punishing you to teach someone else a lesson?  That’s what terrorists do, and God is certainly no terrorist!

So then why the suffering?

Jesus answered his disciples’ question about this issue by telling them it wasn’t a punishment for either the blind man or his parents, but that there was a reason for it.  God had allowed it so that His glory could be shown when Jesus healed him.

Could God restore Jeff’s sight and health?

Absolutely. 

I do not anticipate a miracle like this one for him.  But if I am interpreting the message of this passage correctly, I can trust that the work of God is being made manifest in Jeff.  We may never fully grasp the ways God has used  leukemia for His glory until we get to heaven and our understanding is perfect.  

And when I think of it that way, my perspective can shift from questioning God’s plan to feeling humbled for having been entrusted with so great a task as to bring God glory in the face of suffering.

Grrrr!

My mom enjoys telling a story of me losing my temper when I was very small.  I had a tricycle that my parents allowed me to ride around in our apartment.  There was a wall that partially divided the kitchen from the living room and hallway in such a way that I could ride in a big circle through the rooms. 

As the story goes, the tricycle worked great in the kitchen.  But when I got to the living room, I would get stuck because the carpet slowed me down.  You see, I could just barely reach the pedals with my tippy toes.  And when the going got rough on the carpeting, I needed my whole foot to push the pedal forward, but I couldn’t do that.  So I would have to crookedly scoot forward on the seat stretching my foot down.  Then I’d have to repeat that on the other side as soon as the first foot reached the bottom position. 

One day, I apparently had had enough of this.  I growled loudly at my tricycle and decided to chew on the handle grip to let that dumb thing know how mad I really was!

 

I’ve been feeling like I’m on the verge of a major temper tantrum for about a week.  Well, that does not entirely describe it.  It’s more like teetering back and forth from dread and sadness to frustration and anger.  Today was a particularly bad day for Jeff.

--In a string of not-so-good days.

Cancer stinks.  This whole situation just makes me mad.  I feel like I’ve been at the point where I have accepted death as the outcome for so long now.  I stopped praying for a miracle months ago and simply asked for God to do what is best—for all of us.  And I meant it!  But I am really struggling with how this is best for anyone.  And I’m angry because I just don’t feel like it’s fair to feel guilty for wishing it was over when it seems like God is dragging it out.

Now that I’ve got that off my chest: 

I still choose to believe that God is good all the time, that He really is working this out according the plan that best brings Him glory.   I believe He has big things planned for my kids and me.  Why else would He be testing them so early in life?  I still believe He is a great and mighty God. I firmly believe that He cares and that He is big enough to handle my conflicting emotions.  Big enough to handle the anger and the hurt. 

But I am wondering, “Where’s a good tricycle handle when you need one?”

Peace, Be Still

Are you familiar with the origin of these words?  They are a quote from Scripture, the command Jesus gave to a raging storm in response to his terrified disciples.  It is probably one of the best-loved stories of the miracles of Jesus.

The new disciples spent all their time now with Jesus; they’d seen some of his miracles, but their faith was still growing.  They had not yet realized He was [is] God in the flesh.  Jesus, even though he was exhausted, even though they had awakened him from much-needed rest,  had compassion on them.  The Bible says He rebuked the wind and the waves, saying “Peace, be still.” 

At once , the wind stopped its fierce howling, and the sea was completely calm.  Only then did he turn to ask how they could be so afraid, to comment that they had so little faith.

His sensitivity reminds me of when I was little and had an irrational fear of spiders.  I guess it started one night when I awoke to get a drink of water.  When I climbed back into my bed and pulled the quilt back up to my chin, there was a huge wolf spider resting on my chest looking at me.  (Can you imagine the 5-year-old girl kind of screaming?)

My mother was always calm in these situations—I don’t know how she manages that, because I am prone to freaking out a little bit when my children are upset.  But she never did. 

Anyway, she came into my room and somehow figured out what was upsetting me.  I don’t remember what she did to remove that particular spider, but from then on, I remember shoes being involved.  She hugged me tight.  She whispered, “Shhh,  Baby.” over and over, while she stroked my hair.  She never said I was foolish.  And once I calmed down, she did take time to point out how small that spider was compared to me and to explain that I probably frightened him much more than he had frightened me.  

I’ve outgrown that particular fear.  Oh, I still do not like spiders in my house, and they are likely to meet an untimely death by vacuum cleaner if they decide to come in.  But they don’t send me into hysterics like the mere sight of one used to do. 

Back to the Bible story:

Jesus did not get angry with the disciples.  He was sensitive to their fears, to their human emotions. 

Jesus had spoken to the disciples as the embarked on that journey across Galilee, “Let us cross over to the other side.”  He fully intended to arrive at the other side.  And I believe they would have made it even if he did not calm the storm.  Perhaps the storm would have dissipated as quickly as it blew in had they only waited a few more minutes.  But in their fear, they had forgotten his words. “Carest thou not that we perish?” they cried.

We are going to have moments when we think everything is completely out of control, when we get totally overwhelmed by our circumstances and forget that God has a perfect plan.  The storm seems so dark and powerful that it blots out the face of God.  It’s so easy to forget that we can trust His heart.

Fear can be a robber of peace, an under miner of our faith.  Yet even when our prayers sound more like accusations, still he cares for us.  For the disciples, it served God’s purpose to eliminate the cause of their fear, demonstrating His power over nature.  Because we now have Scripture to teach us the lesson that Jesus is God, such divine demonstration is no longer required.    But he still cares about our circumstances and our fears.   He may not choose to eradicate our source of fear.  But if we allow him to, Jesus will calm our troubled hearts just like he calmed that storm. 

Peace. Be still.

Tweaking Meds

As predicted, the pace of last week with hospice was much more relaxed.  One of the benefits is  weekly massotherapy which targets Jeff’s shoulders and back to help relieve some of the pain.

The nurses also suggested tweaking the meds a little.  The doctor increased the dose of the steroids, adding another pill mid-afternoon.  Their hope was that the extra medication would help reduce inflammation thus reducing Jeff’s headaches.  And by taking the second pill mid-afternoon instead of at bedtime, it would not interfere so much with his sleeping.  He also resumed taking one of the long-acting pain pills before bed.

Those changes have helped a great deal in managing the pain, especially first thing in the morning.  Unfortunately, the increased steroid  seems to be causing some sleep interruptions.  Perhaps there needs to be a bit more tweaking of the afternoon dose.

Though he continues to feel weak, Jeff is in good spirits and enjoyed going to lunch with a friend on Monday.  And we all went out for ice cream on Tuesday after the boys got their back-to-school haircuts.

Thanks for all your encouraging messages.  I appreciate you!

Hospice

Jeff fell about three weeks ago as he was getting up from the couch.  He landed with his full weight onto our coffee table. 

As you know, Jeff is essentially blind in the right eye and has very little vision remaining in his left eye.  He has been able to see shapes and shadows, but in the last couple of weeks even that has been growing dim.  And the cancer in his brain is affecting his sense of balance as lesions in the spine are affecting the nerves in his toes.  All those things combined make him very unsteady, and by the time he realized he was falling, he was leaning too far backward to correct.

He hit hard.  But God was merciful, and Jeff didn’t break anything or cause any serious injury.  He had quite a bruise across his back, and two weeks later when he still wasn’t recovering, I insisted we go to see his doctor.

While we were there, he requested a wheelchair.  And when they had discussed how much difficulty he was having getting upstairs and just taking a shower, Dr. Morgan suggested it was time to give hospice a call. 

I made the call for the wheelchair and it was delivered the next day.  I called hospice and arranged for them to come and discuss strategies for showering.  What I didn’t realize was that when you call hospice, they engage their organization like a precise military operation.

It felt like an invasion.  And yet a compassionate invasion. (Can there be such a thing?)  The phone was ringing several times a day to arrange for all the different visits. 

The coordinator came on Tuesday and ordered the shower chair.  The medical supply company rang the bell at 9 am on Wednesday to deliver the chair.  A massage therapist called Wednesday and left a message stating he would be here at 2 pm. 

On Thursday, his nurse came and a social worker as well.  They were here for three hours.

Then a hospice aide came on Friday.   She called and told Jeff she’d be there in twenty minutes.   (Can you sense that I was starting to feel  frustrated by this?)  I was finishing up at the grocery store/pharmacy when Jeff called me to say she was coming and to please hurry home. 

She was lovely, and in truth her visit was the most helpful.  Jeff was having a rough morning, and he didn’t think he could make it upstairs to shower, so she bathed him and helped him dress in the half-bath on the main floor. 

I just kept telling myself all week that this was all for Jeff, to make him comfortable and safe.  But they said it’s for me, too.  To help me feel a little less like his nurse and more like his wife.  I just about cried when his nurse said that.  I had been feeling so guilty about calling them because I thought I should be willing to take care of his personal hygiene.  I had actually told my mom the night before I called hospice that there was so little of me left that felt like Jeff’s wife.    I wonder if that is a common sentiment among caregivers.  That the more intense the care becomes, the more it overshadows the relationship?  So perhaps having the hospice staff take over some of that will help me focus on just being Jeff’s companion.

Now that everything is in place, I think this week will go more smoothly.  We know which days to expect which person at an approximate time.  And I know that as his condition worsens, it will be a blessing to have their skilled help to care for him.

God Leans Down

Psalm 116:1-2 reads: “I love the Lord because he hath heard my voice and my supplications.  Because he hath inclined his ear unto me, therefore will I  call upon him as long as I live.”

He hath inclined his ear unto me…

I have this mental picture in my head of a little girl sitting on her daddy’s lap.  She wants to tell him something really important, but doesn’t really want everyone in the room to hear it.  And so he leans down close so that she can whisper it in his ear.

God leans down to hear our prayers.

Happy Anniversary

We’ve shared so much through the years—the triumphs and the heartaches, the special days and the ordinary ones.  In fact, I can’t imagine what my life would have been like if you hadn’t been a part of it.

And I just want to tell you that if I had it to do all over again, you’re still the one I would choose to share it all with me.

--My anniversary card from last year

Jeff and I were married 18 years ago today.  I have to admit, I wasn’t sure we’d get to celebrate that, but here we are.  Praise the Lord!  In fact, I’ve decided to stop thinking that this is the last birthday/holiday/celebration that we’re going to have him with us.  Evidently, he is a fighter.

In terms of updates, I’ve been lax to write.  It’s not that I want to keep information from you, but that I don’t want to depress you with weekly updates of the latest symptoms or how nothing’s improved.  I’ve been unfair—asking you to pray and then not informing you how things are going.  I am sorry.

The decline has obviously been slower than predicted, but there is a definite decline.  It’s not something you notice daily, but looking back over the last six months, it becomes very evident.  Jeff can only see shapes and shadows now, and only in well-lit conditions.  Eating is a challenge that we handle by explaining locations of food on the plate: Roast @ 6 'o’clock, peas @ 2 o’clock, roll @ 9 o’clock, etc.  He does better with foods he can pick up.

Walking is difficult, not only because the disease is making him unsteady, but mostly because he cannot see where he’s going.  He got a walker a couple weeks ago, and that has helped him so much.  He can now move with confidence through the first level of the house.  And if he does begin to stumble, the walker is supposed to help him catch his balance.  Today it helped him not to trip over the kids’ shoes.  (We’re still working on not dropping things in the middle of the entryway or placing things on the stairs to be carried up later.  Those were bad habits before that are now quite dangerous habits.)

Probably his most significant complaints aside from the vision loss are pain and some loss of taste.  Most days his pain medication does a fairly good job of keeping him comfortable, but occasionally he just can’t seem to get adequate relief.  Those are really rough days.  I was concerned about how summer break was going to shake out with three noisy kids and one person with a constant headache.  I think we are managing okay so far.  (And yes, I have thought about sending them out after breakfast and locking the door after instructing them to ring the doorbell at lunchtime.  But I haven’t done it.  LOL)

The loss of taste is frustrating for him, as he was a bit of a “foodie” before.  Not that I am a great cook, but he did enjoy fine food and the subtleties of flavors.  Some friends have shared some tasty spicy recipes  that he enjoyed.  Fortunately our kids actually enjoy spicy food, too, as long as it is not too hot and they are great about trying new things.  Mainly, Jeff eats pickles and chocolate these days.  Oh, and salad.  His doctor would be pleased to know that he can taste and does eat salad.

I had mentioned hearing loss before.  That doesn’t seem to be any worse, really.  The radiation oncologist had told us that there might be some hearing loss due to the treatment, and since it doesn’t seem to be progressive, I tend to think that’s all that is.  On Friday, I was in the kitchen and he asked “Is that the ice cream truck?”  I had to completely stop what I was doing and hold my breath to hear it, but he was right.  A few moments later, the ice cream truck drove past our house.  So he can actually hear, but he has trouble distinguishing between two sources of noise.  For instance, listening to the TV while someone is talking in the next room is frustrating.  He can’t make out one over the other.  Honestly, I wonder if that is more from the headache than from hearing loss.  But I’m not a doctor, so that’s just my humble opinion.

In all reality, we are very blessed.  I truly thought we’d be in hospice by now if he was still living.  He’s still Jeff which is something he was fearful of losing, worried that the radiation or the leukemia itself would alter his personality.  His speech remains only lightly affected to the point where I wonder if anyone else really noticed the slight change but me.  He’s still able to hug the kids every night and tell them he loves them.

And he’s still my best friend.  Still finding ways to encourage me when I’m supposed to be encouraging him. 

He’s always been like that. :) 

Waiting for Normal

I don’t even know what normal really is anymore.  But I find myself wishing for it. *insert chuckle*  Don’t we all?

I am tired of waiting.  But in the meantime, I am learning.  With each task (which used to be Jeff’s) that I’ve taken on, I find a huge sense of empowerment in its successful completion. 

Last week one of our smoke detectors began chirping intermittently.  It took two days to figure out which one was making the sound.  It would chirp about three times then quit for a few hours.  After narrowing it down to the second floor, I finally happened to be standing in my bedroom doorway when it chirped again. 

“It figures,” I thought.  The smoke detector in the master bedroom is located about halfway up the vaulted ceiling.  I decided that if I was going to replace one battery, I was going to replace them all.  No sense in lugging the ladder up and down the stairs more often that necessary!

One quick trip to Wal-mart, and about 30 minutes later, no more chirping.  I was pretty pleased with myself.  (Incidentally, we have a LOT of smoke detectors!)

Last night, I assembled a wooden glider all by myself.  Do you know how difficult that really can be?  The hardware parts that were included did not match the pictures or counts in the instructions.  I phoned the customer service hotline and put the goofy thing together while I listened to the recording on speakerphone : “All of our agents are currently assisting other customers.”  Once I figured out where the different bolts were intended to go, I just hung up.  Ha!  Turns out, I didn’t need any help. :)

All that to say this:  I am learning that I can do this.  I don’t want to do this, but I can.  God’s grace is sufficient.  Even if normal never comes.

Thirsty

I try to make things seem as normal as possible.  Lots of things are still the same, in truth.  Household chores, lawn care, kids, daily stuff… My brain finds solace in routines:  a way to move from one task to the next without really thinking, some might even say “ignoring the situation.”   I wonder if that is a defense mechanism of some sort.  A way for my heart to disengage  in an effort to make things seem normal.  I have felt numb for weeks now.

So, I was surprised to be suddenly suppressing tears on my way home from church Sunday night.  Jeff had come to evening services with us.  (No longer able to sit upright for very long, he listens to the service over a speaker in the pastor’s office where he can lie down on a couch.)   Afterwards, I watched him walk his unsteady walk and stand waiting for me to come lead him to the car.

The ups and downs get to a person, especially when it seems there aren’t very many ups anymore.   I hate seeing Jeff in pain.  And in my frustration over it all, I’m afraid I’m not the comforter I ought to be.

With the increased weakness and intensifying pain come the questions “How bad might this get?” and “How much longer before things get really bad?”  And then sometimes, when he is feeling comfortable, I think he could do this for a long while yet.  I have no idea what to expect.

This is a dry and thirsty land, spiritually-speaking.  This weariness of walking on with unanswered prayer.  Does Jesus care?  I can say with certainty that he does. 

I’ve been through dry spells before—periods when my Christian growth seems stalled even while I am truly desiring His presence.  Have you been there?  You are thirsting for God, for evidence of His working in your life, but He seems elusive.

Could it be that  He has designed this time as well?   It would seem so.  For when we are desperate for His presence, His leading, His comfort, no earthly substitute will satisfy.  Like the Psalmist, I cry out “O God, thou art my God; early will I seek thee: my soul thirsteth for thee, my flesh longeth for thee in a dry and thirsty land, where no water is.      –Ps. 63:1                                                           

The Bible promises relief:  For I will pour water upon him that is thirsty, and floods upon the dry ground: I will pour my spirit upon thy seed, and my blessing upon thine offspring:                                                                                    --Isa. 44:3

A friend read a passage to me this morning from Revelation 21 describing what the future holds for believers in Jesus:

1And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea. 2And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband. 3And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. 4And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

5And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful. 6And he said unto me, It is done. I am Alpha and Omega, the beginning and the end. I will give unto him that is athirst of the fountain of the water of life freely.

Freely!  No more dry spells!  We will be whole. We will be satisfied in the presence of God.

And so having been reminded of these truths, I determine to keep walking.  I keep asking.  I keep longing for God.  Knowing this: that He has always proven faithful, and  He is bound by His essence to continue in that faithfulness.  I will keep trusting.

In Your Hands

A couple of weeks ago, I heard a song on the local Christian radio station about being in God’s hands when our world is shaken.  As we struggle through difficult times, it is not necessary that we understand all the reasons why, though we definitely wonder.   God has us in His hands, and so we can rest that whatever this life brings, however shaken up our world might be, we can be secure in the knowledge that He is holding us.