Tag Archives: GBM

Grace – Our Afflictions Eclipsed by Glory

We are two months short of Mike’s 6th year past diagnosis.  My very first blog post stated “I hope this blog ends up being an awesome testimony of God’s healing and restoration.”

I haven’t posted many updates lately.  I’ve been in a place where I just couldn’t see purpose in all of this anymore. I didn’t feel like it was worth it anymore. Not feeling like you have a voice or purpose is an awful feeling. Especially since I’ve always been such a big advocate of HOPE.  I reached a place where individually I felt like my life was somewhat hopeless and was being wasted. I didn’t feel like I was living fully anymore, I was simply going through the motions.   I didn’t even know what to hope for anymore if I did dare to hope for anything.  To put it simply, I’ve just felt like a mess and was hurting a lot.

As I’m typing this, things have changed for the better since the darkest of the days.

I’m trying to figure out what I’m supposed to share, when, how and where. I’m not sure if I should be writing, speaking, etc. But I do know that I’m not going to sit back and let this past 6 years be for nothing. I’m not going to stop believing that there is purpose in this hardship. That I have purpose.

Many have heard 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in your weakness” But I want to back it up to 7 and 8 where Paul speaks of the thorn in his flesh, a messenger of satan, to torment him. Paul pleaded three times with the Lord to take it away from him. How many of us have something that TORMENTS us? I know I have had many things in my life that I BEGGED God to take away. God’s response was not to take it away. God said “My GRACE is SUFFICIENT for you, my power is made perfect in your weakness.”  I will be the first to admit that this has been a season of weakness for me. But Grace. My afflictions eclipsed by His glory.

I will never forget sitting in front of my husband’s oncologists office in 2012 wondering what we have done wrong to be facing a terminal cancer diagnosis. Certainly a good Christian would not be diagnosed with cancer. Certainly this is a direct result of sin. I opened my bible app and the verse that day was John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  He never promised that we would have an easy life! He actually TELLS us we WILL have trouble! He DID HOWEVER, promise us GRACE. Grace can get us through all circumstances.

As simple as that sounds, its not always something that feels attainable. I don’t want to mislead anyone into thinking I have this all figured out. Being a caregiver is hard.

God’s grace shows up IN OUR WEAKNESS. IN OUR HURT. IN OUR BROKENNESS. IN OUR IMPERFECTIONS. IN OUR MISTAKES. God’s grace can eclipse all of that!

Grace allows us to still have thankfulness, to still have joy, to still have peace…even in the midst of our hardest days. His grace and forgiveness washes away even our biggest mistakes.  Or maybe sometimes Grace just realistically looks like “Hey, I survived today. I had patience today. I had peace today. Well, maybe not even in every moment…but I was those things when I didn’t think I could be.” I think we sometimes have a hard time really comprehending the big picture. For me personally, when I think of Grace….I think of surviving moments that felt helpless. I think of coming up for air when I felt like I was drowning and didn’t have the energy to even tread water. I think of the days I was able to remain calm and patient when everything around me was spiraling out of control. 

My husband was a Marine for 21 years. Two years after he retired, a month after our youngest turned 3, he woke up one day severely confused to the point that he could not even function. He had taken Thursday day off work to blow bubbles with our youngest daughter before leaving the next day on a business trip to Japan. He was really confused that morning though. He was looking in the fridge for his socks and said he needed help getting dressed. I knew something was wrong, so I loaded the two of them up and went to the ER. Initially they realized he had no right peripheral vision and they ordered a CT Scan. They found a mass on his brain and ordered an MRI. That night we spoke to a brain surgeon and were told that we were going to stay the night while they got his brain swelling under control and then we should go home and get our affairs in order and prepare for him to have brain surgery the next week.  The doctor suspected it was a high grade cancer. To make a long story short, he was diagnosed with Glioblastoma which has a prognosis of a weeks to a few months with no treatment, or maybe about a year WITH treatment. People don’t survive this cancer generally speaking. Less than 4% live to see 5 years past diagnosis.

Mike went on hospice in January 2015. While he was on hospice, our 15 year old became pregnant. That entire situation was a huge lesson for me on grace. How to give it and how to walk in it.  In Dec 2015 our grandbaby was born while Mike was still on hospice. After a year and a half on hospice, Mike was removed.  He is much like a dementia patient as he struggles with self care and memory. He requires 24 hour supervision and assistance. Through all the struggles, all the stress, all the overwhelming moments, God’s grace has sustained me.

God’s grace is bigger than our mistakes. And have I ever made mistakes.

God’s grace is bigger than our brokenness.  And I am the first to admit I’m broken.

God’s grace is bigger than our mess. I am a mess at times. I’ve made messy decisions…I don’t have all this figured out quite yet.

God’s grace is bigger than our PAIN. And let me tell you, I’ve experienced pain this year. All the emotional pain of the last 6 years hit me hard and took me on a downward spiral. I can’t be the only one who has experienced this. Nothing specifically changed on the outside, but on the inside all of a sudden I just felt Raw. Broken. Hopeless.

At my lowest, as God always does, he swooped in and saved me… Again.  And I have a feeling He will do this again and again and again.

The Session this week is called “Call it Grace” and those three words are what inspired this entire blog post. Log into Facebook and check us out April 21st at about 7pm Eastern time and hear more about the life saving power of grace.

 

 

 

 

 


Glioblastoma – Long Term Survival

This information is easy to find when newly diagnosed with Glioblastoma:
“The median survival of glioblastoma patients is approximately 12 months. However, 3-5% of the patients survives for more than 3 years and are referred to as long-term survivors.”
 
This part, however, somehow I never came across until Mike experienced it:
“When long-term survival does occur it is often accompanied by severe treatment-induced dementia.”
 
I remember so clearly Mike talking about the “life reset button” that he felt he was given. If he had known the future, he probably would have been tempted to opt out of treatment. I’m glad he didn’t know because he wouldn’t have understood the plans God had for him or understood the lives he’d touch by his tenacity to face each day.
 
By the time a person is diagnosed with Glioblastoma, their ability to research and advocate for themselves is usually pretty limited. Due to brain swelling, Mike was severely confused. I’ve walked many people through the first weeks of diagnosis…the hard part is knowing that long term survival is rare…and even if they are “blessed” with long term survival, chances are their lives will never be the same. I’m about as thankful as they come…but some days don’t feel so blessed. That’s the reality of what we are living.
 
May was brain cancer awareness month and I’ve learned that GBM is more common than I ever realized. God placed in our path a widow who had walked out GBM with her husband before Mike’s pathology even came back. She was a friend of a friend. Because of that, I felt two steps ahead because I was able to research. Sitting in the doctors office and hearing GBM – I already knew what we were up against and I had already done research. When the surgeon told me NOT to go to Duke or ask for a second opinion, I already had my mind made up that we were going. Had I not already done the research, I might have never pursued the brain tumor center at Duke.
 
Just some random thoughts as Mike’s official 4 year date of his first surgery and diagnosis is coming up. 4 years ago he had a deadly brain tumor that was growing and causing havoc, we just didn’t know the extent of what was going on in his head just yet.

 July 2015 – Glioblastoma Survivor  

 I woke up Wednesday morning to a private message from someone praying joy, peace and supernatural energy into my day and praying for calmness and a pain free day for Mike.  I saw that prayer answered as we made it to church as a family that evening. It’s still rare for Mike to get out.  Most days this week he has slept until evening at least. Overnight was rough Tuesday night. He was awake hourly saying he wasn’t ok and that he was feeling bad and his head was hurting pretty bad. I thought for sure he would sleep all day to catch up on the rest. But no, he was up and wanting to be busy. The prayer of a friend in the morning did make a difference! 

When we do randomly get out to church, it’s the best feeling to be welcomed with open arms and lots of love. I’m thankful for all the people in our lives who simply love us when we can show up and continue to pray for us when we don’t. 

    
   

  
God continues to show me the miraculous healing and restoration that has taken place in our lives. 

I don’t doubt the blessings in my life for one second! Yes, Mike’s cancer is so much harder to deal with on so many levels than I could ever even try to explain. Some days I feel spent and broken. But at the same time, even on my broken days, I’m stronger than ever. Mike’s bad days are bad but his smile is genuine and his love runs deep. 

My heart feels like it gets ripped out of my chest almost daily….but there is joy even in the midst of all the hardships and heartache.  

Even in the trials and tribulations, we are thankful to be living an abundant life. 

 
Speaking of JOY, I just realized that I haven’t announced this on the blog yet,…..our teen daughter is expecting a baby girl and she is due Dec 30th. As you know, our daughter is 15 so this was a huge shock, but we choose JOY and we choose LIFE.    We choose to embrace this new little life  ….So there’s that. 🙂  This photo is from a gender reveal party that I threw for them to find out the gender. All the pink confetti revealed to them the gender!  


Insight into the GBM rollercoaster..

February 2nd – Mikes health is such a roller coaster. After about 40 hours in bed, he’s up and feisty. Feisty is good. It’s so crazy how he will be barely functional and then bounces back. It makes me so thankful for the good days.

February 3rd – Too much roller coaster: I was so happy that he was awake and feisty yesterday because he had a rough 40 hours, and this evening he is unable to form any words at all, is confused and just makes sounds when trying to say something and gets agitated. I’m trying to get him to sleep but he refuses to stay in bed. He is dragging his right side worse than ever but refuses help and refuses to lay down. He’s wandering around the house very unsteadily as I stay close to make sure he doesn’t get hurt. Thankfully my mom is here laying with Kenzie. Reality sometimes just sucks and isn’t pleasant at all. Praying for peace for my husband tonight…


Hospice – Glioblastoma Update

I look around and see the Kindergarten homework, sparkly shoes, silly artwork, video games and funky teenage combat boots. Today is a half day for the kids leading into a 4 day weekend.  Before cancer entered our lives we always left town on long weekends.  Long weekends were always our time to reconnect, re-energize and have some adventure.  Instead of packing up for a weekend at the Outer Banks or some other destination, today Mike was officially admitted into home hospice.

What makes this especially difficult is that it isn’t something I can talk out with my husband. My person.  The one who always helped me sort out big decisions like this.  For awhile Mike hasn’t been able to comprehend his illness. He hasn’t understood why his head hurts or why he can’t “think right” as he says it.  He doesn’t remember the brain surgery, radiation or chemo most days.  The last several appts we went to for treatment, he didn’t understand why he was there getting an IV or what medication he was getting and why, even when we told him over and over again.  The last appt he told me he was tired and didn’t want to do this.  It has taken every bit of him to just walk into the office lately and he reluctantly accepted a wheelchair to get down the hallway after we got into the office.  It has been months since he left the house for something other than doctor appts.  The ugly reality is that I don’t even remember the last appt when he was able to walk into the bathroom on his own and provide the urine sample in the cup without my assistance.  Not a glamorous piece of information, I know…but that’s the reality of it.

At this point he doesn’t remember conversations. He will ask me every two minutes where the kids are, even in the middle of the night if he wakes up.  Most people would just know that their kids are in their beds under the same roof, but in his mind that logic just isn’t there. Talking to Mike about his treatment options have only left him in a state of confusion and distress each time.  Any conversations about brain surgery or his diagnosis just leave him devastated as if he is hearing the diagnosis for the first time.  I’m hesitant to post this because I do not want anyone talking gloomy to him or mentioning the word hospice.  This may end up being a very private leg of this journey for our family.  He is fine with the nurses that come into the home, and he is relieved to know that he doesn’t have to leave the house for doctor appointments anymore, but I do not want him brought down by sad conversations or devastated at the word hospice being said to him.  That is not a moment of sadness that he needs to feel over and over again, and HOPE and POSITIVITY is important.  We will let him live each day to the fullest with the most comfort possible, physically and emotionally.  I will hold onto hope of a miracle, even as we are faced with hardships and an obvious decline.  I will strive to rest in confidence that each day is already paved out before us.

**Just so we are clear since I am sharing this, Do NOT have a conversation with him about hospice.

At this point his body and brain are functioning so poorly that comfort care is the best goal for him.  Since there is nothing further we can do, it’s in God’s hands.  In God’s hands isn’t a bad place to be.  God is bigger than cancer, bigger than treatment, bigger than the damage we have seen.


A video recap on this Glioblastoma Multiforme Journey! GBM Survivor

Check out this video recap of the past two years on this roller coaster called brain cancer…look what the Lord has done!  How fitting that this happens to be my 100th post! 


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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