Tag Archives: gbm hospice

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!  


Valentines Day – Handwritten Engraved Necklaces, photos of our GBM warrior, and a detailed update

Our Valentines Day was nice. Mike felt okay for a few moments, but not for long throughout the day.  The girls and I went to a florist and picked out a couple of flowers to make a bouquet and I had Mike give the kids these gifts that we had made back in September.  He has lost his ability to read and write, so these gifts of handwritten engraved necklaces, a keychain and wooden “I love you” boxes are very special.  Kayla actually had to wait until this morning for Mike to sit with her for her to open her gifts because he wasn’t feeling well last night and she wasn’t here when the other kids opened theirs.

I don’t remember where I bought the boxes from, but the necklaces came from the following link: https://www.etsy.com/listing/156050883/custom-handwriting-necklace-with-the?ref=shop_home_feat_1

This is the flower the girls picked out for me…

IMG_8955-Edit

And I picked out my favorite flower….

IMG_8958-Edit

We ended up with a nice little bouquet.

IMG_2469

IMG_8972-Edit IMG_8973-Edit IMG_9000-Edit IMG_9038-Edit IMG_9046-Edit IMG_9059-Edit IMG_9060-Edit

aIMG_9070-Edit IMG_9073-Edit IMG_9077-Edit IMG_9078-Edit

Most days Mike really has to muster up the strength to have even just a few good moments.  He often sits with his head in his hands in between those good moments.

IMG_9071-Edit IMG_9076-Edit

Kenzie wanted Red Robin for lunch, but we haven’t been able to go to a restaurant since August.  Mike doesn’t leave the house at all anymore.  About a month ago he left the house to go for a ride to the Krispy Kreme drive thru, and that is when we realized its just too hard and the enjoyment isn’t there.  Red Robin is just a half a mile from our house, so I ordered to go and brought it to them.  Mike wasn’t feeling well enough to sit at the table, so we all joined him in the room.  Most of the time he is in our bedroom still, but there are times that the adjustable hospital bed is needed to help him sit up.

IMG_8936-Edit IMG_8942-Edit IMG_8945-Edit

As far as whats going on with Mike these days…well, he has some really great moments still, and I’m so thankful for that.  That is what I dwell on day to day – the good moments.  But in all reality, he has some really bad moments too.  I’d say the pain is pretty well managed, so that is an improvement.  Its just the random brain shutdowns that are difficult. (for lack of a better way to explain it)  He can be doing so well one moment, and then have problems the next. For instance, last night all of a sudden he said “I can’t see.” When those things happen, (its not the first time his sight has gone)  I go into comfort mode.  I do whatever I can to help him have peace.  These moments are scary for him I’m sure. I tend to try to get him to the bed and try to get him to sleep when the scary things are happening and I hope that he can wake up feeling better.  We also wanders like an Alzheimer’s patient.  Other things that go during that brain shut down mode are speech, and sometimes the ability to stand or sit up. Sometimes he experiences just one of these things, sometimes all of them together, along with the Alzheimers/dementia type of behavior.  The hardest moments are when he’s having the dementia behavior along with the physical inability to physically be steady.  There have been times that he refuses to stay in the bed, yet he isn’t safe trying to get up.  This doesn’t stop him from trying though, and he has had falls.  Its really hard to describe, but my hope is that by trying to share our experiences I’m giving someone some insight and that it will help someone else in their care giving journey.  Sometimes the fact that we know that it is “normal” within the realm of GBM patients helps us as caregivers to get through the hardest moments and helps us know how to better help our loved ones.  I don’t have an answer on how to get him to stay in bed, but the biggest relief is when I can make sure he isn’t anxious, scared or extremely agitated.  There are medications to calm our loved ones so if you are experiencing this, just share the details with your doctor of what is happening, and they should be able to prescribe something to comfort the patient.


The blessing of hospice

I wanted to update on hospice.  Hospice is going very well, I love the hospice nurses that come out. It has been pretty typical for the nurse to sit and talk to me for 45 minutes and then go into the room and check Mike’s vitals. This last visit was the first time Mike was actually awake when the nurse came so she sat at the table just getting to know him.  I am very happy that this hospice company works closely with Mike’s oncologist office, so we still are somewhat under the care of the doctor and nurses that we love so much who feel like family to us. The only difference is that Hospice is who I call, and the Hospice nurses call the doctors office. When Mike needs a prescription, it is still his same doctor making the decisions.  I used to call the nurses/doctor when I had a problem, so it brings me so much comfort that the hospice nurses are calling the same doctors office that we have been going to for over 2.5 years for Mike’s care.  I now have even more support.  Instead of feeling like we took something away, I feel like we have added.  We did take away the Avastin and chemo, but we have added more resources and people to make sure Mike is comfortable, and at this stage, it was the absolute right decision.  I spent many nights not knowing what to do and now I have someone just a phone call away, even in the middle of the night. I feel peace with the decision.


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.