Leave it to Kevin...

First of all, you have to understand Kevin.  He's an investigator.  When looking at something new, he will open doors, push buttons, and move levers to see what happens. Consider the two of us shopping for a vehicle.  I get in, check my comfort level, and look around.  Meanwhile, Kevin is moving the seat, changing the steering wheel, opening any compartment, testing the radio, etc.  Why the difference?  I'm more afraid.  It's the old "you break it, you buy it" mentality.  Or as I told the kids endlessly when they were younger, "Look with your eyes, not with your hands."  Have you seen the commercial where the person opens up the cabinet door and the whole cabinet falls off the wall? I fear that would be me. Kevin doesn't seem to have that fear.  Thus, he learns a lot more than I do with his hands-on approach.

This contrast is evident in our cell phones too.  Kevin frequently plays around with the various ringtones and notification sound effects.  I think if his parents call, cows moo.  Once he had his phone set to a diesel truck starting.  I remember being frustrated one night when we were in a hotel room because someone kept starting their truck during the night.  Silly me...I found out in the morning it was just Kevin's phone.  Funny how someone (Kevin) in the same room and in the same bed never heard a thing.

I, on the other hand, probably have the default sounds on my phone.  I'm not sure because my phone is seldom off mute.

If you were to text Kevin today, and heard his phone, it would make you laugh.  Although it's a bit premature, Kevin decided to change his notification to "Radioactive." Leave it to Kevin...what a guy. I'm thankful for every day I get to enjoy his humor.

This is real

Today I was out running errands after dropping Kevin off at work.  When we are outside of the hospital, life seems to progress as normal.  I think that is one reason Kevin goes to work every day, so life can seem more normal.

I stopped at Shopko pharmacy to pick up Kevin's steroid prescription.  They had called yesterday to
say it was ready so I was surprised when the clerk couldn't find it on the shelf.  After checking around, the head pharmacist stepped in.  "This drug is a $7,000 drop so we wanted to make sure everything was accurate before we process the order."

What??  "I'm just picking up his steroid.  We had it filled here a few weeks ago."

They walk over with four different medications and a pile of papers.  "I'll process the Temodar (chemo drug) right away for you. He can ring up the others while I finish this up."

The hospital wasn't even sure Shopko would be allowed to distribute the chemo drug and was going to do some checking, so this totally caught me off guard. We thought we would be dealing with the chemo drug, antibiotics, and anti-nausea medication on January 6. I was just picking up a steroid.

Usually I tell them to skip the bag when I pick up a prescription.  Not today.  I needed the bag for all of this.

As I sat in the car, with the bag of drugs on the seat next to me, I realized... THIS IS REAL.


But I'm thankful.  WE have insurance.  WE are blessed. I don't really know what the pharmacist meant by a "$7,000 drop" but clearly this drug is expensive.  Thankfully, we have insurance.  How does anyone without insurance get this treatment?  I cannot begin to imagine the despair they must feel.

Psalm 55:22 Cast your burden on the Lord, and he will sustain you; he will never let the righteous fail.

There's Still Time to Learn

Today felt different.  Kevin got a ride to work early this morning. Kailey was at work. I was home with my own To Do list of household chores. The heavy snow added a blanket of quiet which made for quality thinking time while shoveling.  On days like this I always do my own thing with the intention of wrapping things up when Kevin gets home.  I allowed myself to realize that at some point that daily deadline won't exist anymore.  But I couldn't let myself ponder there too long.

While working on the driveway, I remembered that I had not gotten my lesson yet on how to work the snow blower.  I had never had to know how to use it before.  Thankfully, there's still time to learn. I am realizing there are lots of little (and big) things I don't know how to do.

This weekend,  as Kevin and Keaton bought water softener salt, I realized I had no idea how often Kevin bought salt and filled the softener.  He just took care of it.  For my mini lesson, I carried in one bag of salt, cut it open, and dumped it in.  I'm confident I can handle that job as long as I buy the 40 lb bags of salt rather than the 50 lb which Kevin prefers.  Let it be known that Keaton did the real work by carrying in the other 4 bags and getting them into the softener.

I need a refresher course on checking the oil in the car and putting air in the tires too.  I've been shown before, but once again, Kevin always took care of it.  Thankfully, there's still time to learn. I've already decided I'm not going to be all Super Woman and learn to change the oil in the car.  That's just craziness.

I don't even know how to make popcorn in our Stir Crazy popcorn popper.  It's a job Kevin has always done and he's pretty darn good at it (except for the time he decided to experiment by adding cinnamon to the popcorn--which Kailey and I will never let him forget).  Thankfully, there's still time to learn.

For the past few years during our Black Friday shopping, I've bought a few bags of popcorn kernels which supplies us for the year.  On a whim on Christmas Eve, I threw those two bags of popcorn into a bag for Kevin and scribbled a quick note, "May we have many more nights of sharing popcorn together."  Who would have thought that was the gift that would have brought us both to tears that night.

The Mask

We couldn't decide what to name today's post.  "The Man Behind the Mask" or perhaps "The Adventures of the Man Behind the Mask."

Before I explain, let's acknowledge that once again God was looking out for us.  I think he said, "These people have enough on their plate so I'm going to keep them safe today."  Our 1:30 appointment in LaCrosse meant we had to travel the roads where meteorologists were telling us to stay home.  "I love driving in general and I really love the adventure of driving on slippery roads" said me NEVER! We had two close calls that I still cannot comprehend how we didn't wreck.  In one instance we were inches from t-boning a pickup truck which had slid in front of us. Yikes!

Back to the appointments...

At 1:30 we met with a nurse who taught us more about the chemotherapy pill treatment Temodar. It's interesting how my husband, who never took any medication, will soon be a walking medicine cabinet.  Along with his current steroids (and Pepcid to protect his stomach from the steroids), he will be taking the Temodar (chemo drug) along with an an antibiotic to prevent pneumonia and an anti nausea medication.

Deb from radiation met with us at 2:00.  She explained the procedure for the mask making that would happen today. It's pretty amazing how they take the piece of plastic mesh (Kevin is holding an example), soak it in warm water, and then stretch it over the patient's face to create a mask.  The gray plastic pieces snap to a table to hold Kevin in the exact position for radiation treatments.  While they had him in place they did a CT scan to help Dr. Driscoll create his radiation treatment plan.

The next appointment is scheduled for January 6. Kev is calling it a "test run." Radiation and chemo treatments will start the following day.  They were able to meet Kevin's request for a late appointment (5:00 pm) so we won't have to miss work. Treatments will be every weekday for a total of 30 days. By the way, Kevin has been assured more than once that he won't be radioactive when he leaves, thus he won't "glow in the dark" (much to Kevin's dismay).

Side effects will accumulate over time. He will begin to notice more of the side effects about half way through those treatments:  fatigue, skin irritation, redness, and hair loss on the treated area, nausea, headache, sensitivity to heat/cold. (Maybe you were supposed to read those really fast like they do on the commercials). Of course, everyone responds differently, and Kevin has been one tough cookie so far.

One last thought on masks. We all put on a mask at times to hide how we may truly be feeling. But God knows everything about us and is with us through every situation. Psalm 139: O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord.

Two Weeks Later

Two weeks after Kevin's surgery, we had a long day of scheduled appointments. For those who are interested, the details are too long for a text, so I'll share them here.

Gundersen rescheduled our appointments at the last minute so we were (or at least I was) a bit apprehensive as to how this day would unfold.  Kevin's appointments were in Gundersen's East Building which is pretty easy to navigate.  We started at 8:45 a.m. with staple removal.  The fabulous nurse made Kevin feel very comfortable and completed the process painlessly.  No more zipper head! Unfortunately, she didn't clear him for driving until he meets with the surgeon again in January.

At 10:00 a.m. we needed to be back in West Salem to meet with our lawyer.  She will update our wills and gave us each a To Do list before we meet again.  At 11:00 a.m. we met with our financial planner in Onalaska.  The goal there was to reassure Kevin that I will be okay financially.  He needed to hear it from someone else besides me.

Thanks to a gift certificate from Kevin's brother, we enjoyed the soup and salad lunch buffet at Piggy's.  What a treat!   Thank you!

1:15 -  Back at the East Building to meet with a social worker.  At this point, she gathered information to get to know us better and just let us know she is part of our care team if we need her.

2:00 - Met with the radiation specialist, Dr. Driscoll.  On Monday, December 28, Kevin has an appointment for the planning phase of the treatment.  He will have a mask made which will assure his head is positioned correctly each time he receives radiation. Radiation treatments should begin the next week.  Kevin will receive treatments Monday through Friday for six weeks.  The treatments are short so he should be in and out in 30 minutes.  He will spend more time traveling to and from than in the actual treatments.  At the same time, Kevin will be taking chemo pills daily.

After six weeks of radiation and chemo treatments, Kevin will have a month off to recover.   They will do an MRI at the end of the recovery month and every three months to check his status. Chemo will start again, after that month off, with pills five days in a row and then the rest of the month off.  That will continue for six months.

Possible short term side effects of the radiation:  tiredness, skin reaction to the treated area, hair loss in the treated area.  Possible effects months after radiation: short term memory loss (most common), decrease in fine motor skills, decrease in executive function (tasks that require high degrees of concentration).  Improvements can be made over time or the effects can be permanent; it varies by person.

3:00 - Supposed to meet with Dr. Kwong the oncologist in charge of chemotherapy.  Somehow they lost track of us in our walk from 1st floor to 2nd floor and we waited for 45 minutes.  Needless to say, our energy was waining along with our patience.  The pill form of chemotherapy called Temodar (aka Temozolomide), which Kevin will be taking, doesn't seem to have the awful side effects which I have heard others have endured.  He could have some nausea at first.  In addition, he will be at an increased risk of pneumonia so he will be on an antibiotic.  They will monitor his blood counts weekly.

During the day, Gundersen continued adding appointments that we didn't know about. Not sure how that happens. We met with their financial representative to talk about our insurance coverage.  What I gathered from that conversation was we had another person on our side if we had any financial questions.

The final nurse scheduled to meet with us never showed up and we had had more than enough for a day so we checked out around 4:30.

The hard reality of all this is that there is not a cure.  We will eventually lose Kevin from Glioblastoma.

With all that said, we have a lot to be thankful for...

• As we continue to say, Kevin is an active part of our life today and we will fight to keep him as long as we can.
• His treatment is manageable and shouldn't decrease the quality of his life too drastically.  Many, as we witnessed today with the constant stream of patients in and out of the East Building, are enduring much worse treatments.
• We have insurance and savings and sick days.  Not everyone can say that.
• Along with the wonderful support of family, friends, and co-workers, we now have a team of Gundersen personnel to see us through this.  Based on the business cards we received today, I don't think we have enough for a football team, but definitely a basketball team with reserves on the bench.

Thank you for your continued prayers.  Deuteronomy 31:6 was shared with us to see us through our long day; it certainly helped.