New Normal

One would think that since I was done with the school year that I would have more time to write updates.  Yet, this is my first of the summer and it is mid July.  Actually, I've written more than one blog post in my mind while weeding in the garden.  The words just never made it in to writing.

For the past five weeks or so, Kevin's health seems to have "stabilized" and we have become fairly comfortable with the new normal.  To be quite honest, Kevin's rapid decline at the end of May had me (and I believe a few others) wondering if he would make it through the summer.  Thankfully, perhaps due to his current treatment, Kevin made some slight improvements and has maintained that status for several weeks.

Infusion is via IV. He's holding a Pepsi

Currently, Kevin receives an infusion of Avastin every two weeks.  Initially the infusion took an hour and a half but they have reduced that time to thirty minutes since he has not had any negative reactions. Generally, by the time he has labs, sees the doctor, meds are ordered and the infusion is completed, he misses about a half day of work. According to Kevin, the treatments wipe him out a bit for the first few days.  He still goes to work but usually hits the recliner as soon as he gets home.  As the next treatment time gets closer, he thinks his left side starts feeling more numb again.

Quote from treatment room

This drug has not shown to increase life span but improve the quality of life.  That improvement in quality seems true for Kevin.  In May, ascending/descending stairs was not something I wanted him to try solo.  This was stressful as we have steps to enter our house as well as an upstairs bedroom. Now, depending on the stairs and if there is a rail, he's doing them on his own.  I also believe he's getting used to this new normal and what he can and cannot do.  That doesn't always mean he's happy about his current physical condition, and frustration does set in at times, but he's figuring it out.

What I personally struggle with is the mental/behavioral side of things.  When Kevin's just not happy or even angry, there's just no way to narrow down the cause. Am I doing something wrong? Does he just not feel good? Is it the steroids? Is it the tumor messing with his brain? All of the above? With social media it's easy to paint the picture that everyone is happy and smiles all of the time. Thank goodness no one is sharing the video action behind that picture!

Those who follow me on Facebook know we've been busy.  Once we knew what Kevin felt able to do, we said, "Let's do it while we can."  In mid-June we went with friends in a motor home to the Michigan Nascar race.  Luckily, the kids were able to come too.  Allstate Peterbilt sponsored a car in the race so the eight of us were able to get "hot passes" which gave us full access to the garages and pits. Lots of good food and laughter.

Missing John, Kate and Adam on this pic

We have had multiple family reunions as well.  They seem to take on a new meaning in these circumstances.

I'm going to go off on a bit of a rant here but I know this is a reminder for me too.  Kevin has had a few incidents where his weak left side and instability have made strangers notice.  The immediate assumption is that he's had too much to drink.  What if they really knew that the team effort to get Kevin down safely out of the steep grandstands at the races had nothing to do with drinking? Or that the knocked over garbage can in the lobby of the hotel was truly a gallant effort by Kevin to help carry bags out to the car, not the unsteady result of a drunken stupor from the night before. It makes me mad, but I have to take a deep breath and ask myself, "How many times have you made assumptions like that?" Lots.  Guilty.  I need to remind myself that people have stories that I know nothing about.

Devils Tower

Over the 4th, the four of us traveled West to Devils Tower, Yellowstone, and the Grand Tetons.  We rented a cabin in Wyoming, close to the Montana border, and enjoyed the beautiful sites of God's creation.  I've shared with others already that we felt quite "off the grid".  At the cabin there was no tv, no radio, and no cell phone service.  When you hit the seek button on the van radio, it would find one scratchy station.  Generally, I'm not a fan of being glued to technology, but we quickly realized how dependent we've become.  There are many times where we would have liked to have known the weather or directions or general news stories or even when Old Faithful was going to spew.

Obviously we didn't hike any of the trails so it felt like a lot of "seat time" but it was worth it.  I kept thinking of others who haven't made that trip and hoping they get the chance. We all agreed, as we passed the state line into Minnesota coming home, that we preferred the green rolling hills and productive acres of crops of the Midwest.

Grand Tetons

With this "new normal" we sometimes forget the circumstances (which I don't think is necessarily a bad thing).  But then I need to remind myself to pay attention, enjoy this moment, because it may be the last time you do this together. It sounds awful but shouldn't we ALL be living our lives that way? Instead, we often think, "There's always next time...or next year...or tomorrow."

These past several weeks, the health of family and friends has been more in the forefront of our minds than our current situation.  We are hoping that the patients and the caregivers are adjusting to their new normals and that this is just a bump in the road for them.

As always, we continue to be thankful...

• For opportunities. Every day on our last vacation I thanked God for the opportunity to have those experiences together.  Although there were a heck of a lot of people in Yellowstone (a million people tour Yellowstone in the month of July), not everyone gets that opportunity.
• For healing. May all of those who have had health setbacks continue to heal.
• For vacation time.  Use it!
• For Kailey's Kwik Trip employers allowing her to take off as needed since she doesn't really have vacation.
• For the garden.  I often think, "Is this really how I should be spending my time?" But I appreciate the sense of accomplishment when pulling weeds and harvesting vegetables. 
• For people helping people.
• For the continued prayers.  It is so heartwarming to have people come up to us and tell us they continue to pray for us.  

Be wise in the way you act toward outsiders; make the most of every opportunity.

Colossians 4:5