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.

One month ago...

One month ago...April 2, 2016.  I know where we were.  I know what we were wearing. Not because something tragic happened that remains imprinted on our memory.  Quite the contrary.  One month ago, hundreds and hundreds of people gathered in honor of Kevin.

Too many times the phrase "there are no words" have been a part of our life these past five months. For that particular day, there are too many words. Unbelievable, amazing, humbling, awesome, and blessed are just a few.  That's why I have struggled to write this post.  How can I possibly find the right words to describe that experience and show our gratitude?  I can't and, unfortunately, when I become overwhelmed, I often get stuck and do nothing.

I know Kevin has been disappointed that I haven't acknowledged his benefit in one of our posts.  He's dropped hints.  Quoted a few lines.  I was still stuck.

Isn't it funny how things come into your life when you need them?  Maybe it's a song or something you read or a story someone tells that helps you make that connection and get "unstuck". Back to that in a bit...

As most of you know, I wasn't crazy about the idea of a benefit (that actually sounds pretty mild...I was pretty adamant and spelled out my feelings in an earlier post).  Kev said, because he knew this wasn't going away, "Let's just call this a party."  Okay, I like parties.  Let's have a party.

Boy, did these people throw a party!  We have NO idea how many people were there, but we know it was A LOT. Club 16 said they served food to 416 people and we know that many people didn't stay long enough to eat or didn't get in line to eat before they ran out of food. Crazy! Where did all of these people come from?  I can honestly say there were a lot of people I didn't know.  The people from the trucking industry, along with family and friends, came out in full force.

In some ways, I wish I would have shadowed Kevin for the event to meet some of these people who are a part of his life. But, with that many people, the divide and conquer approach seemed more practical. Unfortunately, with so many people, we didn't catch everyone and didn't get to have the quality conversations we would have liked.  I've made this plea before and I will make it again.  If you want to visit with Kevin, don't wait.  Give us a call and let's get together while we still can.

The kids and I were quite surprised on how well Kevin held up for the day.  The night before he was grumpy (which he later admitted was actually nerves about the benefit) and Saturday morning he seemed weak.  We honestly didn't see how he would make it through the entire event.  Eleven plus hours later, the majority of which he had been standing, Kevin had done it.  The next morning, as the family was walking to church, we were talking about our concerns about him making it all day.  I commented, "I think all of the love carried you through."  Kevin replied, as he trudged painfully, "I sure could use some of that love to carry me now." :)

A few people took me by surprise.  One was Fud Marking.  He bought our trailer from us when we lived in Wabasha.  We've been gone from Wabasha for almost 20 years now and I think I've only seen Fud once in that 20 years so I certainly didn't expect to see him there.  Of course, no surprise, I couldn't remember his name.

And one group brought tears to my eyes.  Three of Keaton's friends from work surprised Keaton by driving down from the Cities. What hit me at the moment I saw them was that now I knew Keaton had a support group to help him through this.  They would be there for him...and moms need to know that (yep, I'm crying again).

So...how does one even begin to thank ALL of the people who made this special day possible for Kevin?  I'm afraid to mention names for fear of leaving people out but here goes.  Thank you--Shane and Emily Nottestad, John and Kate Schaitel, Mark and Lori Privet, Ed and Joni Vorbeck, Todd Hemsath, and Corey Wilson just to name a few.  We cannot even imagine all of the time, money and effort you put into making this day happen.  There are not enough ways to say thank you for creating this memory for our family.

My heart also swells when I think about how the families of these organizers worked so hard too.  I can still see Ed and Joni's kids manning a table, Ben and Andy Schaitel selling chances, and the Nottestad boys all over the place helping anyone who needed it. There were so many hands who made this possible. Amazing.

I tried to stay clear of the basket/prize/auction area so I don't really know who or what was contributed.  Please know that we are thankful for any contribution you made.  I did venture over to admire the beautiful table that Kevin's nephew Andrew made to be auctioned off. The picture does not do the river design justice. We know this project became a family affair and we appreciate the love behind it.

Back to being "unstuck"...(yes, that was 9 paragraphs ago!)...Tom Thibodeau came in to speak one night after work.  He asked, "How many of you have bought a ticket for a cancer benefit?" I didn't look around but I could hear people lifting their arms.  He went on, "Does just the family benefit? The whole community benefits." I think people had been trying to tell me that but it hadn't been sinking in.  Tom had my attention.  I was grabbing some paper to take notes.  He said the word benefit comes from two Latin words meaning "to do good together".   A light bulb went on.  Yes!  Because of everyone's extreme generosity, WE (all of us) could "do good together".  I'm not exactly certain what that "good" is right now, but we'll know it when the time is right.

Tom shared another story of a young soldier who had lost his arm and had a prosthetic leg.  He was struggling to maneuver his child's stroller with just one hand.  His young wife put his arm around him and helped him guide the stroller.  She said, "Let's push together. It's just too hard pushing alone."

Tonight we are thankful for all of you who are helping us push through this together.  We know we couldn't do it alone.