Scan Day

Those of you who have dealt with this cancer thing in your life, or your loved one's life, know that your world rotates around scan day...in our case MRI day.  Once the date is scheduled, it is implanted in your brain.  Life keeps happening but that date lingers.  There's anticipation because you know you will get answers, but also dread because you might not like those answers.

At Kevin's last scan in late May, the news wasn't good, but we were expecting it.  His symptoms had us prepared.  Today, I really had no idea what to expect.  In my opinion, Kevin hadn't gotten any worse.  On the other hand, Kevin thought he felt worse and was apprehensive about today.

After our last visit to Mayo, we had made the decision to have all future MRIs scheduled at Rochester so we could see Dr. Uhm the same day and avoid the runaround getting his opinion.

The first half of the day, things were going our way.  I met Kevin at his work at 10:00, had an uneventful drive, found a fantastic parking space in the ramp, and located the lab area without a hitch. We were probably almost 45 minutes ahead of his scheduled lab time but they took him in early anyway.  The MRI wasn't scheduled until 12:55 but we decided to try our luck again and see if he might get in early.  Luck was on our side.  He went back about 30 minutes ahead of schedule.  Woohoo! That meant we got to eat lunch!  I learned my lesson this time...DO NOT look at magazines while waiting for Kev to get out of the MRI.  They are full of pictures of food and it is torture on a grumbling stomach.

For those familiar with Rochester, we walked a few blocks from Mayo to Newt's to grab a burger. They have been voted #1 burgers in Rochester for the past several years.  It was an easy walk, good food, and I'm glad we gave it a try.  I will admit, I've been pretty spoiled my whole life and taken many things for granted.  For example, as we searched for Newt's, we discovered that it was an upstairs restaurant.  Accessing it meant walking up a long set of metal stairs outside the building. Until Kevin's situation opened my eyes, I would not have thought twice and just cruised on up the stairs.  Today I thought, I wonder how many people cannot eat here because they cannot climb the stairs. I wonder if we wanted to eat here again in the future if Kevin would be capable of the climb. Okay, let's be honest, I also wondered how many people had a few too many beers and fell down the stairs.

We were not scheduled to see the doctor until 4:00 so we had time to kill.  We enjoyed the beautiful day with a leisurely walk back, stopping to relax at a few benches along the way.  As usual, I was trying to make conversation, and thinking about the possibility of finding ice cream. Kevin, in contrast, was becoming more quiet and withdrawn.  At close to 3:00 we decided to press our luck and check in early.  Maybe there was a cancellation. Maybe they were ahead of schedule (I know you are chuckling at that one).  When Kevin gave his information at the desk, the lady responded, "You know your early for your appointment."  Kevin quipped, "I didn't have enough time to go home and come back so I thought I'd hang out here."

Kevin proceeded to nap.  With a full tummy, I could look at magazines again.  I tried to doze, but I was afraid we would both be sleeping and miss them calling our name.  I would nod off and then pop up to look at the clock...three whole minutes had passed.  Repeat. Repeat. Finally I gave up.  I was flabbergasted when Kevin woke up at exactly 4:00.  I looked at him.  "How did you do that?!?"

At 4:15 they called us back.  So much for the luck from the morning.  They did all that fun height/weight/blood pressure stuff and then left us to wait for the doctor.  And wait.  And wait. When you are expecting bad news, you just want to get it over with. Meanwhile, we could hear nurses and assistants leaving.  "Have a good night."  What if they forgot us in here?  At 4:45 I opened the door to investigate.  I heard Dr. Uhm's voice so I knew he hadn't left for the night.

At 5:00, Samantha, a nurse practitioner came in.  "I've just had a very long conversation with Dr. Uhm and I'm here to discuss your results."  She must have seen the look on my face because she commented about not seeing Dr. Uhm.  Me, being always so blunt, said "He is the whole reason we came here."  She said she was more than happy to have him come in at the end to answer any of our questions.

Contrary to what we expected, the MRI showed substantial improvement.  The tumor had shrunk! Admittedly, I was still doubtful.  I had read that the infusion Kevin was receiving, Avastin, could cause scans to appear better even if they weren't.  Samantha agreed with what I had read but assured us that the scans showed improvement in both the enhancement view and swelling view. I wish I had a picture to share of the comparison between the May MRI and today's scan. They are clearly different. There were a few brief moments where I believe Kevin was so overcome with relief that he was trying to hold it together in order to comprehend everything she was saying.  Understandably so.

The plan is to continue on the Avastin treatments every two weeks and return for an MRI in six to eight weeks.  If Kevin should have more pressing issues with excessive tiredness, an increase in blood pressure (side effect of Avastin) or negative changes in lab results, they could change the schedule to once every three weeks.  This would allow more time for his body to recover in between treatments.

By the way, we didn't have Dr. Uhm come in to see us.  Samantha was very thorough in her explanations and answered all of our questions.

So today we are thankful for:

• Another beautiful day.
• Remarkable health care facilities around the country that help people find answers.
• A shrunken tumor!
• The many people who are praying for us.
• Answered prayers.

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us--whatever we ask--we know that we have what we asked of him. 1 John 5:14-15

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