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.