Tag Archives: gbm hope

Because May is brain tumor/brain cancer awareness month…and because I look back at the last 6 years since diagnosis and say “Look what the Lord has done.” 

We aren’t any more worthy than anyone else and I don’t understand why I’ve seen so many amazing people lose their lives here in earth to Glioblastoma and why Mike is alive – I do know many lives have been touched and I knew in 2012 to start my blog so people could follow because I felt that God was going to use our situation for something big. I just felt like there was a bigger picture all along. I accepted the prognosis. I prepared, I planned a funeral, we made sure all affairs were in order. We found peace. I have gone through some lows and have been exhausted too, but 90% of the time in the past 6 years I’ve held strong.

Mike’s surgeon specifically told me not to even bother with a second opinion. That’s a huge part of my memories and a huge part of knowing God was in this from the beginning. I’m a people pleaser and I had to learn to stand up and fight back. To be an advocate for Mike and not accept just whatever I was told. His surgeon was amazing and I know every person we dealt with had a purpose for our lives. But I remember by discharge I already knew I was taking him to Duke and I had kinda asked the surgeon his thoughts on a second opinion at Duke or MD Anderson before starting treatment – he said no, not to even consider it. To contact a local doctor – which by the way, there is no a treatment that will cure GBM – chemo and radiation is just a way to buy some more months of survival. God put us on someone’s heart before Mikes surgery even happened!! She gave me a heads up on GBM and told me about how amazing Duke was before we had a diagnosis, I ALREADY knew that if I heard “GBM” that we were going to Duke for more options. She told me she knew Duke gave her extra precious months with her husband before he passed away. The Brain Tumor Center at Duke gives hope and options sometimes when other doctors don’t. Sometimes they just can’t, but I was told to get there fast (before starting any other treatment) for the best chances of having options. 

GBM is a horrible diagnosis. But it wasn’t a death sentence for Mike. Even if he would have died within that first year, GBM brought Mike into a place of eternal life. And not only Mike! So many lives have been led to God through this. CA71A330-7CDC-4F1F-A466-28CF909484E8


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.

“I’m proud of you”

At about 1am after an exhausting day, I finally got into bed to sleep knowing I had to be up by 6am.  Mike talks a lot as I’m trying to fall asleep and he kept saying “I’m proud of you. I love you.” And guess what, I woke up proud of myself.  We have been together for 18 years and a lot of negative words were spoken in those 18 years. A lot of people who know us now would be surprised at the struggles we had. I’m pretty transparent about our lives in hopes to help others. Words are SO powerful.  They have the ability to speak life into someone or totally tear them down and destroy them. Words have healing power. Do we want to build up our loved ones or destroy them?  Use your words wisely and speak life into those you love. Words are creative.  Negative words can creative a slew of destruction including insecurity and doubt. Negative words cause pain. Pain causes destruction. Negative words can destroy marriages and relationships. Positive words can CREATE. How COOL is that when you really think about it?  By what we speak, we can create hope, love, encouragement, excitement, motivation, relationships! I could go on and on.  I think all too often we like to blame someone for their actions against us but we take no responsibility for our words or attitudes towards them.  Our words don’t even have to be specifically against them to destroy a relationship with them.  Negative words are not going to return to us in positive actions for the most part. It takes a whole lot of grace to respond to negativity with something positive. I’m not saying I’m positive all the time. Yesterday was an emotional day for me and I ended up in tears several times. The thing is, I don’t unpack and live there.  Facing the tough parts of life and then focusing on the positive is not only my goal. it’s my survival strategy.

We have a responsibility to speak life into those we love. This is so important for those with brain cancer and their caregivers too. If you are suffering and you have a caregiver, you can breathe so much LIFE into them by thanking them. Build them up with words, tell them they are doing a good job and that you appreciate them. I bet they will be motivated to take even better care of you. If you are the caregiver, you can build up your loved one by using words to show them they are NOT a burden to you. Let them know it is an honor to care for them.

Sometimes with brain cancer, depending on what area of the brain is damaged or where the tumor is located,  no matter what you do, there is anger and aggression.  (It’s not limited to where the tumor is located. Sometimes the brain has swelling and that swelling causes pressure to another area of the brain.  Different areas control different functions, but swelling can cause your loved one to have functionality issues in different areas.)  It’s hard to let those words and actions bounce off us as caregivers. It’s hard to not let that cause damage to us and our relationships.  I personally pray for grace in those moments. I’ve prayed for protection over my kids that in those moments that there is a hedge of protection around them.  I’m trying so hard to lead my example for my kids. If they see me act in patience and kindness, they are more likely to do the same. I learned this the hard way. When I react to some of Mike’s behaviors with frustration, the kids do too.  I don’t always succeed, but I do better than if I didn’t try at all.  I’m human and my first instinct isn’t always to act in love and kindness. This is an interesting graphic about what areas of the brain can affect different functions. It is interesting to see because Mike’s tumor was discovered in his left occipital lobe and he can’t read because the letters don’t make sense anymore.

b-left

Functions of the brain

Proverbs 15:1 ESV
1 A soft answer turns away wrath, but a harsh word stirs up anger.
Ephesians 4:31-32 ESV
Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.
I figured I’d also share a photo of me and my grandbaby in our matching LuLaRoe leggings!  I have a whole blog post to share about being a caregiver and taking care of ourselves, so you will probably see this photo again as I’ve just recently stopped living in pajamas and actually getting dressed and taking care of me again. It was totally normal for me to shower and just change into another pair of pajamas each day because I didn’t see the point in getting dressed when I knew I wasn’t going to leave the house.
LuLaRoe Leggings

Here’s my grandbaby rocking matching LuLaRoe leggings. They aren’t just for Mommy and Me, we like to “Grandma and Me”

 


Glioblastoma Update

Mike is such a fighter, he always has been.  He perseveres even on the hardest days and he is steadfast in his fight for life.  I know that hospice can be a wonderful resource but Mike refuses to consider letting hospice come in at this point. I understand and I fight right along side him even on the days when I feel like we are flying blind and I have no idea what to do.  (Do we call an ambulance, do we call a doctor, which doctor – oncologist or primary care, do we wait it out at home, what if something happens and I wish I would have taken him to the hospital, but what if he gets admitted and wants to come home – he felt like a hostage last time he was admitted)  I feel like we are being propelled at a million miles a minute some days and I have no idea where we are going to land.  Its a scary feeling.

We opted to not do Avastin at the last appt and to instead focus on trying to get his blood pressure lowered.  Avastin is contributing to his dangerously high blood pressure and he is having a lot of swelling.  We will see the doctor again and possibly do the Avastin infusion this week.

Since the Duke trip he has not left the house for anything other than to see the doctor and once for church (which ended up being way too hard for him.)  Even though we’ve had some bad days, we have had some really great days too. The great days aren’t over.

I have been working on some custom jewelry for The Creative Bond and it has been such great therapy for me.  I will have more Brain Cancer Awareness jewelry ideas that I will be adding.  I will be adding a keychain too!   I’d really appreciate everyone heading over to “like” the facebook page to show support and share it with friends. 🙂

I don’t know if this Etsy shop will be something that I will do for awhile, or if its just a temporary distraction from everything else that is going on.  But for now its something to do that is giving me a distraction and giving me a creative outlet.