Buck Up

I wanted to title this post, "Looking for the Easy Button." But that didn't seem right.  In the grand scheme of things, the frustrations I'm feeling today and the disappointments from the week are not that bad.


Gosh, just writing that made me smile.  Kevin uses that line on me all of the time.  Kathy: "How's my hair?" Kev: "It's not that bad."  Kathy: "What do you think of my outfit?" Kev: "It's not that bad." Kathy: "I tried a new recipe. What do you think?" Kev: "It's not that bad." To truly get it right, you have to emphasize the word that when you say it. Imagine my many responses.  The most positive would be a sarcastic, "Thanks (said with attitude)."

So why do I end up crying when I'm on the phone when dealing with this "stuff"?  Today it was the poor person at Diplomat Pharmacy. Little did she know...

• that the drug in discussion had been suggested by the doctor at Mayo on Sept. 8. Before leaving that day, we asked that all reports be sent to Gundersen, specifically Dr. Kwong.
• that I had called Diplomat Pharmacy the very next day to make sure that all of our paperwork was in order so that once the prescription had officially been filed, it could be sent immediately.
• that on September 16 I emailed our Mayo report to Dr. Kwong and requested that he order the drug (in hopes that we could start it when seeing him on the 22nd)
• that on September 21 I called Dr. Kwong's nurse asking if he had received my email, as well as the reports from Mayo, and ordered the drug.  He didn't recall seeing any email from me but the records from Mayo were there.
• that we met with Dr. Kwong on September 22 and he agreed to call the pharmacy that morning
• that Dr. Kwong's nurses called twice to discuss chemo drug procedures and get our oral consent...even though this is Kevin's third different chemo drug AND they didn't bother to do any of this while we were in the office that day.

However, the lady at Diplomat did know that our prescription still hadn't been filled and when the order got beyond the actual pharmacists' counter, they would need to call us to arrange payment and delivery arrangements.  "Could you take my credit card now for payment?", I ask. "No. We have a specific set of steps we must follow..." which she proceeded to explain.  It all made perfect sense but it just felt like another roadblock to me after all of the above and I didn't want to deal with it. So the tears welled and dripped down my cheeks.

Perhaps we should take bets on when the drugs will actually arrive from Florida.  You know, like a baby pool of the date and time of when the newborn will arrive.  Feel free to make your guess in the comments or reply on Facebook.  Why not have a little fun with this, right?

What's ironic is I'm not even sure we want this drug I'm fighting so hard to get.  I sensed that Dr. Kwong was a little hesitant about our decision to add Lomustine.  He said it has been around about 40 years and was the standard drug before Temodar (the first chemo drug Kevin took) replaced it. The way Dr. Kwong described it, I'm afraid that Kevin could get quite sick.  

Once we get the drug, Kev will take it once every 6 weeks.  About an hour and half before bed he needs to take an anti-nausea medication.  Twenty to thirty minutes later he should take two 40 mg capsules.  He will repeat this twice so altogether he has taken six of the 40 mg capsules.  The hope is that he can sleep through the possible nausea and keep the medicine down.  In addition, his blood levels will need to be checked weekly.  Low blood counts can increase the chance of infection and catching something from those germs we carry around.

Last Friday we heard from Karen at the Brain Tumor Network regarding clinical trials.  She sent us a few to look at.  I sent them on to Mayo as well since Dr. Kizilbash said he would be willing to look at any possibilities.  Kevin was most interested in a Phase II trial at MD Anderson in Texas.  By the way, clinical trials have three phases.  Phase I is the initial testing and the most risky.  If they see some positive results they will move to Phase II and eventually to Phase III.  

So we were encouraged that it was a Phase II and Kev likes MD Anderson.  As he described it, "I've called them before and they are really nice and actually call me back."  Unfortunately that trial required infusions twice a week for three weeks and then repeated.  I was not in favor of this trial because it would mean we would be away from family and friends for an extended period of time.  Let's just say we didn't see eye-to-eye on this one but in the end, it is Kevin's decision.  Wednesday, Kevin called MD Anderson and they told him he didn't qualify because he is taking Avastin. 

In another trial, a ICT-121 dendritic cell (DC) vaccine is made from patient's white blood cells and given back to the patient over several months.  The goal is to stimulate the patient's immune system to kill the patient's glioblastoma tumor cells. The study didn't say specifics on treatment times so I called them on Wednesday, but they said they stopped taking participants at the end of August.

As Dr. Kwong said on Thursday, "You are running out of alternatives." I knew that but it hit me hard. Doors seemed to be closing without new ones opening.  Leave it to Mr. Positive... As I shared my feelings on our drive home from the appointments, Kevin said, "A miracle is going to happen." 

So why did I pick, "Buck Up" for my title?  When the kids were little and would complain about aches or pains, I would be the ever so compassionate mother and say, "Buck Up."  Kailey hated when I said that.  Envision a teenage eye roll. So now I'm delivering myself a dose of my own medicine.  Buck Up.  Things aren't really that bad.  Just put it into perspective.

Little side story...Kevin thinks someone should call the police on me...for leaving a sleeping husband in a hot car.  Here's the real story.  Last night when I was driving Kevin home from work, I was encouraging him to take a nap before friends came over.  "Why don't you crawl in bed upstairs.  I'll pull the shades and shut the door and you can snooze away." Kev replies (with a slight whine to his voice), "Why can't I sleep in my chair?" "Because I want to run the vacuum cleaner and clean the bathroom and I'll be too noisy for you to sleep."  As I pull in the garage, he puts his seat back and says, "Why can't I just sleep right here?" Okay. Whatever. I closed the garage door and went out to check on him an hour and a half later.  After his blissful sleep he teasingly accused me of leaving him in a hot car...

Today we are thankful for

• those who continue to pray for Kevin so he can get that miracle
• the patience of those who take phone calls from pesky people like me
• cozy cars to nap in
• continued research for new treatments
• positive attitudes

"For I know the plans I have for you," declares the Lord, 

"plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

A Curve in the Road

Imagine driving down the road, perhaps daydreaming a bit because life is good, when...whoa...a sharp curve! You weren't expecting it so you slam on the brakes, adjust, re-evaluate, but slowly continue on.  That was us on December 6. Other times, you're cruising along, but you've been on this road before and have some experience so the curve, not so sharp this time, just slows you down and leads you in another direction.

Today, MRI day, gave us another curve to deal with. However, based on what we've learned from the past, we were expecting it.

Last weekend, Kevin was having stability issues when walking so he decided to start using a cane. Trying to depend on having something around for steadiness (like a wall or piece of furniture) wasn't realistic so the cane was a great idea.  Thankfully, Kevin's mom had a couple in storage he could test drive.

This week has been a bit trying on the home front for both Kevin and I.  He struggles.  I want to help. What can I do to save him steps or time or effort?  Unfortunately, my "helpfulness" crossed the line into "you don't think I can do anything." Conflict. It's so hard to have people do things for you (Kevin) but it's so hard to watch people struggle when they don't have to (me). Clearly I need to back off.

This morning Kevin and I made the trip to Rochester.  We were lucky enough to have a quick visit with good friends on the way over which brightened our morning.  Luck was on our side again for parking.  As we waited for the elevator in the parking ramp, I did reflect on how Kevin's mobility has changed each trip we make.  When we started, we took the stairs, just to get some exercise. Today Kevin had his cane and stairs would not have been a viable option.

After coming out of labs (a quick blood draw) and using the restroom, Kevin said he needed to sit down.  He said, "I feel a little light headed.  I think I'm going to need a wheel chair." Thankfully one of the ladies who checks in lab patients was willing to retrieve a wheel chair for us from one of the entrances.  The lightheadedness quickly passed. Personally, I was a little relieved we were using a wheel chair.  Even with the cane, and my holding his other hand/arm, Kevin would trip.  His left leg isn't working properly so his toe drops down and catches on the floor causing him to trip and lurch forward.  It gave my heart a jumpstart every time.  Using the wheel chair was a little easier on my ticker...although I'm not sure Kevin could say the same with me driving the wheelchair.

After the MRI, we set out to find lunch.  At one of the loading/unloading zones, Kev was getting out of the wheelchair so we could walk the block or so to get a sandwich.  One of the helpful attendants said, "You can take the wheel chair."  I wasn't sure about it. We looked at each other and decided a walk might be good.  As we made our way to the corner to cross at the light, I was inching Kevin closer to the curb.  He doesn't move real fast so we had to be ready.  A nice woman in scrubs said, "Do you need a wheel chair?" "No thanks, we're going to try walking."  I smiled and thought, "These people are so kind and considerate. How nice."  What I didn't realize until we sat down to eat was that Kevin had a yellow band on his wrist that said FALL RISK.  No wonder!!

Our appointment with the doctor was at 3:20 so the wait did not seem as eternal as last time.  Plus, Kevin was in a pretty good mood.  Not so uptight about the possible results.

Today we saw Dr. Sani Kizilbash.  Not sure why, but he was knowledgeable and nice so who are we to question.  He showed us a comparison of the last three scans (May, July and today).  Today we learned that not only do MRIs have several different angles, but several different views.  For example, we were aware of the Contrast and Flare images.  The injection into Kevin's IV help create these pictures.  However, we hadn't heard of Diffusion Weighted imaging or Perfusion images.

The contrast and flare pics didn't really look that much different from last time.  There was some increase in a dark area which he believed to be swelling.

As I had thought during our last appointment, Avastin (Kevin's current drug) makes swelling go down, but it can mask tumor growth.  In July, we were assured that the tumor looked better and that change wasn't being caused by the Avastin masking.  That diagnosis never sat quite right with me.  In my gut, it didn't make sense.  If his tumor was better, why weren't we seeing an improvement in symptoms?  However, the July diagnosis did bring Kevin peace of mind and hope which is extremely important.  The symptoms weren't getting any worse and I believe we could go and do more this summer because of Kevin's state of mind.

Perfusion images show blood flow in the brain. When just looking at blood flow, there appeared to be no change in the tumor.  But as Dr. Kizilbash explained, that is why it is important to gather as much information as possible.  The Diffusion Weighted imaging shows the density or solid area of the tumor.  Those pictures appear to show growth.  The Avastin is still working to control swelling but the tumor is still growing. The picture shows copies of the Diffusion Weighted imaging from May (left), July (center) and today (right).  The white area (tumor) is larger.

So now what?  Continue with the Avastin every two weeks.  Add another chemo drug called Lomustine.  This is a pill taken once every 6 weeks.  It is a stronger dose of chemo and is based on nitrogen mustard (chemical compounds similar to mustard gas...not exactly thrilling). With this drug, blood counts are taken weekly.  Generally blood counts tend to drop the first three weeks and then start coming back the next three (thus the six week interval). Of course, with any chemo, there are the possible side effects of nausea and fatigue.

An MRI is done along the same schedule, every six weeks, as the drug.  Ideally, they try to have patients get six treatments (thus 36 weeks) but patients generally only get four due to blood count issues. Today, the doctor called Kevin's blood tests "boring" which means they were good, nothing to talk about. He did recommend doubling the dexamethasone (steroid) from 3mg to 6mg to see if it would make a difference.  If Kevin didn't notice a difference within a few days, he is supposed to go back to 3mg.

We also discussed clinical trials.  There are still no trials at Mayo that Kevin qualifies for.  Dr. Kizilbash recommended we check with the Brain Tumor Network to help with research.

Although better news would have been preferable, we were ready for this curve in the road so Kevin (Mr. Positive) won't let it slow him.

Today we are thankful for:

• Beautiful sunny days and the opportunity to enjoy them
• Doctors who can share not so fun news but still laugh with us
• Drugs which give patients options and hope
• Continued research to find a cure
• Helpful and considerate strangers
• Caring friends and family who share their time and well wishes and prayers
• Experiences which help us learn and grow so we can handle those curves in the road

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  2 Corinthians 16-17

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

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

It All Works Out

Twice last week I had contacted Mayo trying to get an appointment with Dr. Uhm.  Once the MRI is read and we have the results, we like to get Dr. Uhm's opinion since he specializes in the brain. Unfortunately, I wasn't making the right connections or saying the magic words to make that appointment happen.

Friday, around 5:30 p.m., we were just back home from the days' appointments and running some errands when the phone rang.  It was Dr. Conway...on a Friday at 5:30pm...of Memorial Day weekend.  That guy is amazing!  We had left his office earlier that afternoon with the plan that he would contact the Optune rep regarding more information.  Dr. Conway didn't have high hopes of actually reaching anyone since it was a Friday afternoon before a holiday weekend.  However, things were going our way.  The rep contacted Dr. Uhm (from Mayo) who said we should try to come to Mayo on Tuesday and he would work us in to his schedule.  Dr. Conway said, "I know it's late notice, but he'll try to work you in on Tuesday."  Great!  That's what I had been trying to achieve earlier in the week and now I had made the right connection.

You know how you hear something and immediately think, "Terrific!" and then reality sinks in, and you start processing the details, and then think, "How is this going to work?"  It's after hours on Friday.  No one will be in the office on Monday.  We don't have a time for this appointment on Tuesday and it's not looking like anyone is going to be contacting us with any additional information. How is this going to work? For a planner, this seems a bit outlandish.

We contacted our bosses, packed the "bags" with medical info and plenty of reading material, and headed out bright and early this morning with plans of "camping out" in the waiting room until Kevin could be seen.  Although we got a tiny reprimand, "Just this once we'll work you in," they set an appointment time for 10:45.  We didn't quite get the reprimand since we thought it was their idea, but who cares.  We were getting what we wanted.

Treatment options according Dr. Uhm from most aggressive to least aggressive:

• Surgery - not a good idea; tumor is too deep and too risky
• Repeat radiation - not recommended as too much radiation can cause permanent damage
• Another round of Temodar (chemo) - not a good option at this point because of tumor progression
• Optune (device worn on head which emits electrical impulses) - not recommending at this point. Because Kevin is experiencing symptoms from tumor progression, Dr. Uhm does not feel the Optune will work fast enough.  It can take 3 to 5 weeks for the Optune effects kick in. Interestingly, the Optune is how we got our foot in the door to get this appointment and it wasn't even a serious contender from today's options.
• Avastin - This drug is a 90 minute infusion which should affect the tumor and help Kevin feel relief from the tumor right away. The infusion is repeated every 2 weeks but can be completed in 30 to 60 minutes depending on how well the first treatment goes.

I've been pretty nervous about Kevin receiving this drug since it seemed to be one of those last ditch treatments.  But my opinion is being swayed, especially if it can offer some relief to his current symptoms.  Kevin is scheduled to receive that initial infusion on Thursday morning.  Kid 2 (Kailey) is going to be his trusty sidekick that morning.

Ironically, Dr. Uhm is attending a conference in Chicago this weekend in which one of the presentations will report findings on combining Avastin with the drug CeeNU (or lomustine).  Based on what he learns, Dr. Uhm may add the lomustine drug to Kevin's treatment. We will wait to hear more on that.

So today, we are thankful for...

• Bosses who understand our situation and let us clear the schedule to be gone.
• An uneventful drive since Kathy was at the wheel this morning.
• Doctors who go above and beyond to make things happen.
• Plenty of hospital employees and volunteers who are willing to help us out and attempt to answer our questions
• An inexpensive yet fairly tasty hospital breakfast which provided nourishment and helped us pass the time (2 orders of scrambled eggs and sausage for $3 total).
• Quality health care facilities close to home.
• How things just seem to work out.

Editor's Note:  I didn't get my Bible verse included as usual before publishing.  A good friend sent me this one.  Thanks, Dave.

And we know that in all things God works for the good of those who love him, 

who have been called according to his purpose.

Romans 8:28

It Could Be Worse

Where has May gone?  As the days are getting longer, they seem to fly by even faster.  Isn't it amazing how a little bit of warm weather seems to make everything come alive?  Flowers blooming, people out walking, and lawns being mowed are all signs that spring is here and we had better enjoy these days while we can.

In Kevin's journey, May started with a five-day chemo treatment.  He was taking the same medication (Temodar) as he had earlier during radiation but the dosage was much higher. The plan was 5 days on, 23 days off, followed by an MRI.  Although Kevin never actually got sick, the chemo was kicking his butt by Day 6.  His body ached, he was tired, and doing just about anything felt like work. Although we tried to get him to just lay down and rest for the day, Kevin (with his streak of stubbornness) managed to keep plugging along and helping out but taking frequent breaks.  Thankfully, by Day 7 he was starting to improve again.

Kevin was also directed to make some changes to his steroid medication.  He had been on 1mg per day but the doctor wanted to increase to 4mg for a week, then 3mg, then 2mg and finally back to 1mg.

As people so kindly asked, "How's Kevin doing?" we were forced to admit, "We are seeing some decline."  Despite the increase in steroids, he is tired and his stamina just isn't there.  He still goes to work every day but he needs to rest and often naps when he gets home.

We have also noticed some of those initial warning signs start to return.  His left arm often hangs by his side.  I watched Kevin and Kailey sort tools in his toolbox last weekend.  Kailey naturally moved things around with both hands while Kevin used just his right.  It is not that he can't use his left hand. It is just that his brain doesn't naturally direct it.  He has to think about it.  I cannot even imagine what that's like..."Yoohoo, left hand, let's help out here."

Kevin's left leg is more numb and he especially struggles with his foot.  His gait has changed to accommodate the leg's lack of cooperation.  We've removed the throw rugs in the kitchen since they became a daily menace to that left foot and just caused frustration.  I tend to hold my breath when Kevin does stairs.  That left foot often doesn't make its mark when going up or down so Kevin has done a few cute little dances all in an effort to maintain balance.

It appears that I'm painting a picture of an invalid, but Kevin is far from it.  He is still doing nearly everything...but it takes longer, requires more breaks, and can quite possibly include a few choice words when he gets frustrated.

This last 24 hours were especially trying but now I'm convinced that was for a reason.  Kevin hasn't been sleeping well and yesterday afternoon he felt "all drug out."  He found his comfy recliner after work and immediately fell asleep.  We had dinner plans with friends so we had to disrupt his slumber.  For some reason his right shoulder had begun to bother him as well (no clue why).  It was a clear sign that he wasn't feeling well when he didn't want to drive.  He also needed help getting out of the car when we arrived.  During the night he tossed and turned, had a cramp similar to a charlie horse in his hip, and complained of being cold even when I was roasting.  I KNOW something is up when he is cold and I'm hot; that just doesn't happen.

I had to be at work extra early so I was ready to head out the door when he got out of the shower. When I checked on him, he said, "I can't get dressed."  "Okay.  We'll do it together."  At one point he gasped in pain from his shoulder and was close to breaking down.  In a rare show of defeat he exclaimed, "This sucks!"  But he got dressed anyway and went to work.

For me, it was a tearful drive to work.  This decline felt too fast.  Was I ready for this?  What changes did we need to put in place to make this work?

So why did all of this happen?  Today was MRI day.  Based on what Kevin had been experiencing physically, we knew the scan would show growth.  We were prepared.

When we met with Dr. Conway, he immediately said when he walked in, "Let's cut to the chase and look at this scan right way."  He wanted to get the bad news over with.  Yes, one of the tumors had grown.  But I believe we all (Kailey was there too) thought it was going to be worse (more tumors, much larger, etc.).  I'm thinking Dr. Conway was a bit surprised that we didn't really react to the scan.

Now what?  Great question.  Dr. Conway recommended increasing the steroids from 1mg to 2mg. Although steroids have their own set of side effects, we think that will help a little.  I didn't find out until last night that Kevin had stopped taking steroids for a few days.  That could have enhanced how rotten he was feeling the last few days.

One possible treatment Kevin would like to look into is the Optune.  It is a head gear type of device which provides electrical pulses to prevent the cells from multiplying.  Gundersen is not certified for this type of treatment but Dr. Conway is going to call a rep and get more information.

We saw a different oncologist today as Dr. Kwong was out of town.  He gave two possible, more immediate, treatment options. Avastin for two months OR Temodar (the chemo drug) for 3 weeks on and one week off.  Personally, I'm not ready for the Avastin option yet and I had never heard of the chemo for that time period (the standard is 5 days on and 23 off).  We agreed to go home and think about it a bit.  Plus, we are again dealing with an oncologist who does not specialize in brain cancer so we would like to hear what Dr. Uhm, from Mayo, has to say.

As May winds down, we have much to be grateful for:

• That Kailey is done with school for another year and home with us again. Her work shift allows her to spend more time with us and she has already been such a tremendous help.
• That both kids have been home nearly every weekend.  It is a lot of driving for Keaton but Kevin and I cherish our time together as a family.  Keaton has done some of those tough jobs (like till the garden) for us when we need it. His weekends go way too fast.
• For family and friends who are only a phone call away. We have not needed a lot of help so far but I know that will change in the future and we are comforted that so many people are willing to help.
• For employers who have been so accommodating with work schedules and expectations. Not everyone is so lucky.
• For those who saw the 60 Minutes segment on Duke using polio to treat Glioblastoma and thought of us.  Kevin had contacted Duke back in February after learning about this study but he does not qualify.  We are thankful that doctors continue to work toward a cure. 
• For all who continue to pray.  Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12
• For the time we have been given and all those who are willing to share that time with us.  Teach us to number our days aright, that we may gain a heart of wisdom. Psalm 90:12
• For the reminder that this moment may be tough, but it could be worse, much worse.