Glioblastoma Battle Update (May 25th, 2014)

Today, my blog post will be a compilation of some facebook posts and some thoughts I’ve saved in the last couple of weeks but only saved and didn’t share.

May 15, 2014

Mike had an MRI on my birthday because he had shown a significant neurological decline. The MRI, however, shows no significant growth. The tumor is still there, and it is still bothering him. His headaches and confusion are pretty bad from the pressure. The brain damage is still something we try to learn to deal with everyday. From what I understand, the radiation that he had to his brain daily in Sept/Oct 2012 can also cause these dementia like symptoms and they can come on worse over time. When you are given this diagnosis and told there is no cure, but that treatment will prolong your life, you choose to prolong your life. It’s the quality of life issue that the doctors didn’t really discuss with us or explain.

 

May 17, 2014

When Mike was healthy, we worked as a team taking care of the logistics of life….now I deal with every single bill, make every decision, solve every problem, take all the responsibility… I really miss his brain working better and I really miss his input on so many of the logistics of our lives.  He can’t comprehend or process any of those details now. I’m not whining, I can deal, but keep the prayers coming for him. As long as he is here I will continue to have hope and believe in healing and complete restoration.  There’s a fine line between accepting what is or not settling for anything less than the promises of what you know God can do.  Somehow I cling to both. I strive for peace with today. Hope for tomorrow. He’s only been awake for a couple hours each day.  The weakness that he feels drives him crazy. As he spends more and more time in bed and feels more and more sick in different ways, I wonder how much worse it can get…and then it gets worse. That’s kinda the story of our lives the last two years. …Just a few things to prompt some specific prayers from my friends. We serve a mighty God. Nothing is impossible. Medically, a healing might not be probable, but it doesn’t mean it isn’t possible.

 

May 18, 2014

He feels pretty bad daily and it’s hard to watch him as he’s losing that fighting spirit. Even the strongest of warriors gets tired at some point. Two years of a very aggressive battle and he’s still fighting, that’s huge.  He has told many people “I’m done.”  He knows that it is completely his choice to continue chemo or quit chemo.  We were told this is only prolonging his life, it will not cure him.  When it comes down to it, he says “I can’t do that to the kids.  I have to fight for them.”

 

May 21, 2014

I’ve attempted to update on Mike but I have no idea how to put into words his struggle. He’s fighting so hard and I don’t know if it’s the brain cancer, chemo, or after effects of brain damage from the radiation, but he’s having to really push each day to just get out of bed. Two years of thinking it couldn’t get worse, and it keeps getting worse. He’s lost about 70 lbs (since his highest weight during the summer of 2012 on steroids for the brain swelling) and he is really weak. He struggles daily with headaches, nausea, and fatigue to the point of not being able to function. Today his Avastin appt was an additional 2 hours for fluids because I was asking if it was possible that he’s dehydrated because he’s been so sick, and I guess I was hoping he’s been so sick because of being dehydrated. The dr said it wasn’t likely that but that he’s give him fluids. Just pray for wisdom as we make decisions regarding his treatment. Don’t quit praying for miraculous healing and a miraculous restoration! None of this is anything new, it’s all been a constant battle. It just seems like he’s not having very many good days. He has a couple of good hours sometimes, like this past weekend, but it takes him days to recover from just a couple of hours out. It would probably be easier to deal with this daily chemo if he felt like it was really doing something, but an MRI last week (on my birthday, the 15th, because of neurological concerns) showed that the tumor has not shrunk at all. Granted, he’s had this recurrence a year without growth. That’s no small feat when you are up against Glioblastoma. This update is kinda a whole lot of no new news, but I wanted to share something and remind everyone to pray for him.

 

May 24th, 2014

I spent the day at the ER with Mike. He had a few things going on. I was having a hard time controlling his pain for about 24 hours at home with Percocet and I was concerned about his lungs with his recent coughing, so we went ahead and went in. The CT Scan showed a severe infection, and the chest XRay came back clear. One stressful part is not knowing what to do and when, so I am thankful that we ended up at the ER today instead of spending another day at home trying to manage the pain on our own. Mikes pain came across as a tooth ache (but he pointed to his face when I asked where it hurt, even after the max dose of Percocet) and he wanted to see a dentist. After talking to an emergency dentist about all of Mike’s health issues, we decided that an ER doctor could help us best, (and save us a couple hundred dollars today) even if he did need an antibiotic for a tooth issue because a doctor could also prescribe that if they saw an obvious tooth infection. It turns out, the infection that showed up on the CT Scan is what was causing the face/head/jaw pain, not a tooth issue at all. The ER doctor did some labs and then talked to Mike’s awesome oncologist office to make sure the treatment plan was the best one for him all around in his circumstance. He’s taking a strong antibiotic for the infection, and was given a stronger prescription for pain. Some prayer requests…obviously, pray for Mike to have some relief. Pray for me to have endless patience as I take care of him and the kids. Praise God that this issue is being resolved and that He gave me the wisdom and peace to work it all out today. Praising God also for an amazing friend and Mom that helped with kids today. I had some divine appts today…one was with the ER doctor that first found the mass on Mike’s brain, one was with a nurse who’s 3 month old baby girl was just diagnosed with a terminal illness, and another was with a couple of pharmacy techs who had a lot of questions about where I draw my strength from. (I’m in there weekly and this was the first time they asked personal questions about Mike’s diagnosis and then they asked how I cope.) I haven’t had cell service all day because I never have service in the ER part of the hospital, but I wanted to share an update…even though its very jumbled. I’ve had a long couple of days trying to manage Mike’s pain and I simply don’t have time to update people individually. I knew I had time to update everyone at once on here before I have to get back to Mike, and its not even a very important update. Its just another day in the life of a brain cancer family. Lately it seems like we always have one battle or another to tend to. Thanks for all the prayers this week!

 

May 25th, 2014 (Facebook post)

Happy 5th Birthday to my sweet girl. She deserves such a better day than I was able to plan for her. Mike has not been steady on his feet since this picture was taken on Friday before her preschool graduation. I had a chance to snap a few photos with her in a field of flowers. Photos sooth my soul. This morning started off a little chaotic as he fell and was unable to walk unassisted, he is so weak. For her birthday, I’m sure the biggest gift would be for God to give her Daddy supernatural strength and energy to be really present for her day. I wasn’t going to overshadow her birthday on facebook with him being sick, but then I realized that real life right now is that her Daddy being sick really is overshadowing her birthday. Her favorite thing to do is crafts, so I think I will get off here and get some praise and worship music on, pray for her Daddy, go do some birthday crafts with her and give her lots of extra snuggles. Pray for wisdom that I know what to do and when for him today (if he needs another ER visit, but I realize this type of status is no surprise to my fellow brain cancer families that have gone before us and that sometimes there’s nothing the ER can do. I realize there is a path that just has to be walked, so prayers in that area for wisdom are much needed. I’m praying that we hit a fork in the road where God’s supernatural power overtakes the situation and creates a new path) God is mighty and more powerful than any cancer. God can heal him and restore him. At this point, I do not have the emotional energy to update people individually with phone calls or texts. I don’t have any answers regarding his health. I don’t know what is going on and I will do my best to share updates here or the blog. Updates here make more sense anyways, because if I attempt a phone conversation, I just can’t get my thoughts together to give any details.

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One response to “Glioblastoma Battle Update (May 25th, 2014)

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