What's Up, Buttercup?

Phone calls from Kevin's work in the evening can sometimes be a frequent occurrence.  He's known to answer with "Dominos!" or "Pizza Hut!" One particular salesman always gets a, "What's up, Buttercup?"  So really...what is up?  There hasn't been a post since JULY???

Our summer was full and busy and fun. We took time to enjoy life. Personally, I really tried to appreciate each and every beautiful day.  It reinforced how much I love the warm weather (and am dreading winter).

Many of you know that Kevin is a motorcycle enthusiast.  Although skeptical at first, he even convinced me how amazing life on a bike (motorized of course) can be.  The wife, who usually read or slept during nearly every car ride, realized that life looks pretty spectacular when riding and I came to appreciate Kevin's passion.  Last November, Kevin purchased a brand new Indian Chieftain. When diagnosed with the tumor, one of his regrets was not being able to ride his motorcycle.  And don't think he didn't try.  Unfortunately, he learned that he didn't have the strength for this big bike. He also didn't have the coordination in his left foot to shift. As the days grew warm this Spring, Kevin's frustration grew.  He just wanted to ride.

This winter my Dad had purchased a Can Am Spyder (a 3-wheeled motorcycle).  He immediately offered to let Kevin borrow his bike.  But we (yep, me too) already had a mindset.  Those motorcycles were for old people.  We used to joke...that will be us some day...two old fogies cruising around on a 3-wheeler.  Kevin wouldn't even try it, even though he really wanted to ride. I'm wondering if it was the stubborn little kid philosophy, "If I can't ride MY bike, I don't want to ride anything at all" (add a little stomping of the foot while this is said).

Late July, Kevin had a dream that he was riding my Dad's bike.  I quickly asked, "Does this mean you are willing to give it a try?" Yes, he was. My very generous father gave up his ride for Kevin's benefit.  Switching from a two-wheeler to a three-wheeler definitely takes some adjustment. The first few trips were a bit of a white knuckle experience (at least from my perspective). But Kevin has figured it out and now makes the weekly Tuesday night trips to Rockton for burgers and takes it to work most days. Even Kailey got to go one week.

As we moved into August, the travel slowed down and work has taken center stage once again.  Demands of the job have pushed into longer work days.  That bothers me a bit.  We both love our jobs but we were both all about work before Kevin's diagnosis.  I want to remember that life is more than work...that family and friends and fun need a strong presence.  (I write that statement but still have feelings of guilt that I should be doing school work right now instead of writing this post.) It's one of those balance things that we struggle with.

Kevin still continues his Avastin treatments every two weeks. Except for wearing him out the first few days after treatment, he hasn't really had any side effects.  The actual infusion is only 30 minutes so we are fortunate.  Although, one appointment did stretch into 2 hours as he waited for the drugs to be delivered from LaCrosse to Onalaska.  Still not sure what the whole story is behind that but someone didn't get a gold star on ordering meds that day.

Kevin's health remained quite steady over the summer which allowed us to still go and do, just at a different pace with some limitations. Kevin has been on steroids since his diagnosis in December.  At his last Mayo appointment in July, he was told he could try to wean himself off the steroids if he felt up to it.  We talked about it at length. Kevin was tired of the side effects, especially the moon face and weight gain. I had also read how steroid myopathy can occur and I wondered if he could build up his muscles again if he were off the steroids.

We decided to start the gradual process of decreasing the dosage. Of course, that brought on new problems like achy muscles and cramps.  I had read that magnesium helps with muscles and joints so he started that supplement.  Unfortunately, as the steroid dose decreased, Kevin's left side seemed to lose functionality as well.  His walking has become laborious. (A friend gave me that word and it seems so fitting. It means requiring considerable time and effort. But it also sounds honorable, which is fitting.  I know how hard he works at something we take for granted).

After getting down to 1mg of the steroid, we realized getting off the steroids isn't feasible. The tradeoff is too great.  He has now increased his dosage once again (to where it was before) and feels like he has noticed improvement.  However, I know Kevin is not back to where he was in July. He often gets frustrated with all the things he can't do.

That frustration hits both of us.  He cannot do what he wants to do and I'm either not strong enough or smart enough to do it either.  Last Thursday was a good example.  We were both tired after work but I still wanted to get the lawn mowed after supper and dishes were done.  The lawn mower is not exactly my friend.  I don't mind mowing but this mower hasn't really cooperated this summer. Kevin had an infusion that morning and was going to rest a bit in his chair. But when I tried to start the mower, the pull cord (probably incorrect terminology) was stuck.  I was mad and almost in tears.  I had broke the lawn mower.  Instead of getting a chance to rest, I had to bug Kevin to help me.  As he made his way outside I pulled out screw drivers and found him a place to sit.  Not being able to maneuver the mower and really get down and look at it made Kevin mad.  Not being able to start the mower made me mad.  We weren't mad at each other, just mad about the situation.  It wasn't exactly a pretty sight.

However, he moved this and turned that and the pull cord released (without the use of any screw drivers).  Then he pulled and pulled, and I pulled and pulled, with no luck.  Thankfully our neighbor saw our struggles and came to the rescue.  ONE pull and it started! Woohoo! The whole day had just been a bit too much for me so I had to say a quick thank you and get mowing before the tears started.

Thankfully, we know a guy who fixes and sells lawnmowers (my dad).  We visited him tonight with a truck...

As always, we have a lot to be thankful for:

• a freshly mown lawn
• a working lawn mower
• a beautiful day
• helpful neighbors
• jobs we enjoy
• co-workers who go above and beyond to be team players and make it happen
• loving and giving parents
• doctors and nurses and medicines
• cards that let us know you are thinking of us and praying for us
• our friends and our children's friends who make us laugh
• frustrations which help us grow and appreciate

"Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy spirit, whom he has given us."

Romans 5:3-5