Tag Archives: Glioblastoma Survivor

The caregiver life, hopes and dreams

You can’t imagine the frustration of wanting to leave the house but not being able to on such a long term basis. This summer I have had more freedom than I have had in a long time. Lately with my oldest and the grand baby not living here I’ve had many opportunities to leave my son in charge at home and leave the house. It’s been amazing, but tomorrow school starts and I won’t have the same freedom and backup like I’ve had over the summer. Over the years I shelved personal hopes and dreams. I had to come to a place where I was completely content having my life revolve around being home and taking care of Mike. As school starts tomorrow I find myself reminding myself that home is where I belong and that I can have complete contentment right here at home. It just takes some rebalancing and centering of my thoughts. I have taken on some work days with a photography company, starting hanging out with new friends, going to church again and have gotten a taste of life outside the house. It’s bitter sweet enjoying the freedom but it being limited. 

Its one thing to have kids and find a babysitter, but I find myself with no options for a “sitter” for my husband. (If there was an emergency I have people who will drop everything and be here. I’m talking about just wanting to leave the house) I know there are private companies, nursing homes, adult day cares – but for one reason or another they are not the answer for us. His comfort, our finances, etc.

I need to blog more on the daily life of caregiving. I think people don’t realize the intensity of caring for someone who can’t care for themselves. Mike was up at 3am hungry. He can’t even pour a glass of milk, make toast or a bowl of cereal. So yesterday morning I was up at 3am and took the opportunity to shower him. He can’t shower himself and he often refuses to shower in the moment. He always says “later” but later never easily comes. So I showered him, dressed him and fed him. Then I let him lay back down. I spent some quiet time with God thanking him for the blessings in my life (because there ARE so many blessings.) I prayed for peace over the house and an ease to take everyone out to church. I loaded up the wheelchair and we went to church. While we were out I decided to push our luck and try a fun outing. Mike started to complain of feeling weird, overwhelmed, exhausted, and head hurting but we went for it anyways. We ended up having a beautiful day out of the house.

There are so many dynamics to being a caregiver to someone who has brain issues. There is awkwardness when a waitress asks a question and he doesn’t understand. I have to keep in mind that he gets confused with utensils easily so I either have to cut up his food or order him something that won’t confuse him.  There’s the blindside and the fact that there is a likely chance he will swipe anything off the table that is to his right. The fact that many places do not have family restrooms and he isn’t stable to walk well on his own often. The physical toll of lifting him when he can’t stand. The physical toll of lugging around a wheelchair and getting him in and out of the van and in and out of the wheelchair. The fact that he can’t be left alone ever…at home or in public. If I were to take him somewhere alone I can’t leave him at a table or in a church service to go to the bathroom. That many times places just aren’t really handicap accessible. Don’t take this as complaining; it’s just awareness. There are family members out there of caregivers that have no idea what they really go through and I barely scratched the surface. Many are completely bedbound. As hard as life is with Mike, I am passionately thankful for th me aspects of our life that are blessings.

I will continue to be so thankful for his life. Many others like John McCain don’t have the chance to live 6 years after diagnosis like Mike.

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As I was scrolling through photos. This one came up. This was a day I was able to leave the house and was really excited to come home and tel Mike about my day. He wasn’t mentally there for conversation that day and slept the entire day. This is the norm. He spends most of his time in bed. I try to stay lighthearted about it so I laughed about him rolling over and going to sleep when I tried to talk to him. I might get mad at our situation but I never get mad at him or take it out on him. This isn’t the life he would choose either. I hope something in this blog touches you in some way. I hope it brings awareness or comfort depending on your situation.

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A caregivers poem

We promise to stay by your side, to be your guide.

….Even in the moments it feels as if the entire universe and our plans collide.

A compass in the wilderness.

Even when the task is vigorous.

We have a bond that only we could ever share.

We will do our best to ease your mind and show we care.

We won’t ask you to remember, or ask you to understand.

We will simply be here to hold your hand.

In the morning, joy will come… even though the night is proving to be unbearably long.

We will rise and stand strong.

When life is crashing like a turbulent wave.

When we feel like we’ve spent all of our energy on day to day tasks, we dig deep to that reserve of energy we knew we had to save.

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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.

 

 

 

 

 


Christmas Baby!

I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015!  She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY!  What a birthday gift!

As you look at these photos, I hope that you see God’s grace.  I’m so proud of our daughter for choosing life.  Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation.  We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in  motherhood and making sure this sweet baby is loved and provided for. We’ve got this.

Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.

Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS!  Praise God!  He is 43 months PAST GBM DIAGNOSIS!

Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.

 


 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!  


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.

 


GBM Reality

I have never heard anyone with this diagnosis ever say “It gets easier.”  Yet, when Mike was first diagnosed, we just kept thinking “If we can just get through this storm…”  We have been on this GBM journey for two years.  I am thankful that God put someone in my life that walked this journey out already and that could open my eyes to the reality of this diagnosis. It has allowed me to plan for the unpleasant details.  I’ve tried to remained hopeful and positive, but this journey never got any easier.  People often say “I don’t know how you do it.” “I can’t imagine.”  Honestly, it is an impossible situation and I don’t know how we do it and I still can’t imagine even how we will get through each tomorrow. I definitely don’t take any credit for being strong or for getting through it.  Because it feels impossible to face some of the things we face.  But we do somehow get through the days. 

I can’t remember the last time that Mike had an actual visitor….someone who came just to sit and talk with him.  In the beginning we were in absolute awe of all of the support we had.  Thinking back on it, I am still so very thankful that we didn’t have to walk that season out alone.  I don’t know how I could have faced such a big new scary journey without all that support at that time.  Many people made a difference.  I’m thankful for the dinners, the prayers, the financial donations, the visitors, the care packages.  It was awesome.  I don’t let this lonely season steal the joy that I still feel about all the people who did so much during that season.  I focus on the bright sides, and I focus on the happy. It has been over two years now and peoples lives have gone on, that’s just the way it goes.  I guess it only makes sense that people make their own families and their own lives their priority.  I guess I just assumed that we would be a priority in there somewhere as well sometimes.  I’ve realized that I have who I need.  Maybe not who I expected or who I wanted to stick around, but I have a handful of people who go above and beyond.  For that I am thankful.

There is so much pain on so many levels with this journey.  In the online support groups, I see that loneliness with this is very common.  People are very hurt that the friends and family who they were so sure would be there, just aren’t there. So if you have come across this blog feeling lonely, I hope you find some comfort.

We serve a God who is always there, always loving, always ready to comfort.  That’s what I know.  I don’t feel it all of the time, and I don’t know why I don’t feel it all the time.  I’m not claiming that with God its all rainbows and butterflies, because I have too many very painful and very lonely moments with this beast of a cancer that has slowly stolen so much from my family.  I’m struggling right now, but that doesn’t change the truth of who God is, even if I’m not feeling it.  

Yes, we still have memories we are making.  But so much is already gone.  I have grieved deeply over many milestones of what brain cancer has stolen….milestones in the wrong direction.  When I feel like I can’t face another day of this, I just remember that many people don’t have that one more day.  Each day of hardship is worth another day with him.

I’ve always been big on sharing our journey, but I’m not seeing any reason to share details at this point.   So this post isn’t really an update at all.  I never in my life could have imagined how hard this would be. 

This blog post feels like a whole lot of nothing, but so many random people come across this blog via google, so my hope is that it does something for someone.  Sometimes I feel like I’m talking to a wall with this blog, but then I look at the stats and see that it has had over 25K visitors, so it must be doing something.