Tuesday, August 31, 2010


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?”

Tuesday, August 17, 2010

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.

Thursday, August 12, 2010

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!

Monday, August 2, 2010


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.