“How’s Mike doing?” August 31, 2014 Glioblastoma Update

I want to talk about how Mike is doing, but I don’t really even know what to say.  One moment in a day he can dance, yet have difficulty with coordination for putting one step in front of the other later in the day. He can seem awesome one moment, but then later in the day be non functional.  He can crack a witty joke, but then ask me literally 6 times in an hour what day it is, which kids are home, and if he has brushed his teeth.

One morning I “reported” The time, day, month and year. That he had brushed his teeth, the kids were all home, the dogs had eaten, we had no plans for the day, and yes, it probably felt cold in the house to him.  He laughed and was like “dang! Was that so difficult? Now just do that every hour and we are good!”  We resort to laughter quite a bit, so its become something we try to laugh about.

The roller coaster is not just weekly, monthly or daily; it is moment to moment. At noon last Tuesday we were headed to the ER because he had little control on the left side of his body, but by evening he was putting wood on a campfire and eating doughnuts. This makes it really hard to think of words to update people on the spot.  Do I say he was dancing in the kitchen? Or that 10 minutes later his right side is numb again and he can’t find the bedroom because he is confused and his brain has checked out?

That’s just some insight on our journey for the moment.  Thank you everyone for loving us, praying and caring. “Caring” sounds so simple, but it’s something I appreciate so much.  Even if we don’t talk or see each other, but I know that you are CARING about us from afar, that is HUGE to me!  So thank you.
I praise God that Mike is home and safe. In the blink of an eye things change and I know this. I’m thankful for now. Where we are in the journey now, is difficult, but I’m thankful to have him with us. I was afraid he was having a stroke on Tuesday when he had numbness on the right and weakness on the left.  The prayers went up quickly and fiercely and were answered. Before the ambulance even got us to the hospital on Tuesday, I knew he was healed for the moment from whatever was affecting him earlier.  He does still have so many deficits from the brain cancer, but whatever was happening that day came to pass with no big scary hospital stay, so for that I was thankful. Even before we got to the hospital, when I was sitting in the ambulance, I felt a peace. For a moment, I was scared. Scared that he would never have the strength to walk and scared that he was beginning a rapid decline. Then it hit me “this day is no surprise to God”. And I felt amazing peace before we even arrived at the hospital. The doctor found no bleeding on his brain or swelling and we headed home shortly after. 

I remember looking at his MRI 5 weeks ago and thinking about how long 5 weeks away is when you are facing brain cancer.  I didn’t have complete confidence that he would be ok for the ceremony.  He was better than just ok for the ceremony.  I knew it was a possibility that he would be in a dazed or confused state, but he wasn’t at all.  It was really an amazing evening. An evening I will cherish forever.  I can’t wait to share more photos with you in about a week when I get them.  He did go numb on his right side during our dance, but that wasn’t a big deal.  He has been going numb almost daily.  This makes me worry obviously, but all we can do is face today.  We are about 3 weeks away from the next MRI.  Living MRI to MRI isn’t even something I can describe.  We always know that the next MRI can bring us some reassurance that he is ok for the time being, or that it can show that everything is all wrong.  We only have a sigh of relief for a moment with each MRI and pretty much start the anxious 8 week count down immediately. 

Its been hard for me this month seeing new issues like the memory and the numbness yet hoping a miracle is happening.  He asked me 10-15 times today if the family has all left because he could not remember what had happened earlier in the day.  (He did hug them all goodbye as they departed for the airport.)  Daily he asks about 10 times “What is happening today?”  “What is today?” 

Mealtimes are difficult for him too.  He needs his food cut up and often can’t figure out how to grab a fork or how to get food on a fork or spoon.  Once I scoop up some food and coach him to put it in his mouth, it seems like habit takes over and he figures it out.  The same for medicine time.  I often have to push his hand towards his mouth because he looks at the medicine in one hand and the water in the other and isn’t sure what to do. 

So that’s my update on how he is doing.  I hope it brings some comfort to others who are in the same situation and that it gives our friends and family insight on how to continue to pray for us.

The last day of school of 2012 is when this all began with that ER visit.  Two summers were totally taken over by this illness, but as school starts this week I am content knowing that we made the best of this third summer with GBM that we could.  We weren’t able to travel, but we enjoyed the days the best we could.

 

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