Tag Archives: GBM
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.
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.
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!
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…
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.
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!