MRI Update -August 2016

Mike’s MRI came back clear. There were no new tumors and the cavity where his tumor was removed looked good. This is pretty rare as Glioblastoma is aggressive and typically grows right back. (Which is why he was put on hospice when we decided to discontinue chemo) By the time it is diagnosed, it has infiltrated the brain. Glioblastoma in itself is a terminal cancer whether or not it is surgically removed. It is so aggressive it just grows right back. This is very rare for Mike to still be here over 4 years after diagnosis. All of the damage in his brain has really affected his quality of life. I ask for prayers of continued healing and for restoration. We are in a place where we feel quite alone just because of the rare situation. We are both struggling with our current normal but there is so much to be thankful for.


Not a lot came out of Mikes oncologist appt today. We got prescriptions and lots of hugs from the nurses that took care of him before hospice. He has an MRI scheduled. The doctor was talking about how Glioblastoma patients aren’t expected to live long enough to see the damage that treatment causes. (Mainly radiation to the brain) Today just reminded me that Glioblastoma is a beast. Either it takes your life or if you are one of the “lucky” tiny percentage to live past 4 years like Mike has, treatment takes your quality of life. Just let me sit here for a minute in this – you know I am thankful and I see the bright side – but the reality of our day to day life honestly sucks most days. And I feel like I wouldn’t be totally truthful if I’m always all “I’m thankful and so blessed.” I am, but there is a hard side to this life and I don’t want to gloss over that. Brain cancer is a beast. It has stolen Mikes hobby’s and his ability to take care of himself. Because of that, my entire family’s life is dramatically impacted as well. 
So tomorrow I will resume with the rainbows and butterfly’s but tonight I just don’t want to. It’s possible to be thankful and also have a hard time with the reality of a situation. 

I want to leave you feeling inspired and uplifted, I really do. Sometimes it’s enough to get through the day. It doesn’t always have to be this huge happy cheerful song and dance…sometimes surviving is all we can do and it’s enough. 

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July Update

Wow, I can’t believe we are nearing the end of July! Things have been totally crazy here. I started working from home with LuLaRoe and the VERY day that I started I received news that Mike was being discharged from hospice. The nurse brought over a form for me to sign stating non coverage with the insurance company, so after filing an appeal and being denied, we have a few small adjustments we are making. I was finally falling into a nice groove of accepting help from a home health aide 3 times a week with showers and shaving, and a volunteer once a week for me to have some time out of the house.

I’m determined to succeed at this business, so I’ve put in long hard hours taking photographs of the clothes to post online, marketing on social media, accounting, inventory, etc.  Many LuLaRoe consultants do a mixture of online sales, in home parties, and events. I can’t leave the house often so I’m really trying to build an online customer base. It’s so crazy that this all happened the same week I was launching my business. I worked through a lot of tears, so its a good thing I’m working from home!

Mike’s nurse made sure we had enough medicine to last until he could get into the doctor and they picked up the hospital bed.  He has an appt with his oncologist this week and I’m guessing an MRI will be ordered.  It’s scary not really fitting into the insurance’s hospice guidelines, yet not having a normal healthy life either.

Speaking of not having a normal life….I don’t know if I have any long term caregivers on here that this will speak to…but it is so hard not being able to get out and enjoy the summer. I’m not going to complain, but I will admit that it’s a struggle.  I’d love to simply leave the house to go walk around a store, go to the beach, or go to the park.  Over 4 years past diagnosis and this whole ordeal is still like a jail to me some days. I would do it all over again for Mike, but for the other caregivers that read this blog, I just wanted to address that the struggle is real. It’s even more so a jail to Mike as he really can’t enjoy things he once did.

I choose to be thankful for the things I CAN do though and I’m thankful for a lot.

I will keep you all updated! For now Mike is off hospice and it really feels like the safety net was pulled from under us, but I have no doubts that everything will work out. I have said often that I feel like I lost the village that keeps my world running smoothly.  I know that even though they had to discharge us, we are not alone.


Father’s Day

Father’s Day was sweet and simple this year. I love how Mike appreciates the littlest things.  We are flying to a family reunion to see his family next week, please pray that the traveling goes well for him. I requested wheelchair assistance at the airport so everything is in place as long as it all goes as planned. His headaches have been pretty constant and intense and he tells me often “I’m not doing good.”  But he has some really great moments too.


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.

Photo Update!!

When you are willing to love and willing to be loved, everything else falls into place. 💕 I snuck this picture because it touched my heart. I’m so proud of Kayla for so many things right now. Graduating next week from high school at 16 with straight A’s while having a baby (of course I do help) and also working 39 hours each week. She’s pretty awesome and I’m glad she’s my daughter and that she’s on my team in our busy and sometimes overwhelming life. Mike wasn’t able to remain standing and was holding onto the wall so she helped him to a chair. Even Kenzie thinks she’s the best sister ever. 👍 Life is good. It’s hard right now for many reasons – But I go to sleep every night thanking God for the many blessings in my life. I’m so thankful. 

   

A moment captured

    
    
    
    
    

Mike put this necklace on . lol

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How homework gets done when you are a teen mom.

  
    
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Life on Pause

Four years ago our life as we knew it came crashing down into a million pieces. The doctor wouldn’t even talk to me about the future. I asked about treatment plans beyond a year and options. I was pretty much told there was no conversation to be had. (Obviously, I didn’t take that answer and moved on to taking Mike to Duke.) It was made clear to me that people don’t survive Glioblastoma. We put our lives on pause.  There were no more long term plans to have more kids, get a promotion, buy an expensive item (bigger house, new car, etc,)…heck, we didn’t even dare purchase plane tickets a month in advance because day to day his health was unpredictable.  We totally paused our lives. We put all of our energy into getting through the day. It took everything we had to get through each battle.

We stopped making big plans, or any plans really… we stopped thinking about the future in a sense. I mean, my financial future has been something I’ve put a lot of thought into, but it isn’t something I’ve been able to DO much about.  I have to be home with him or hire a caregiver so there was no way for me to go to work. We had to learn to live in the moment because plans just didn’t work out anymore.  In a way, we found peace in our new “live in the moment” lifestyle we had to adapt to. We had to find peace or go crazy. But when you are on 4 years of living on pause, it gets deep.  It hasn’t been all bad, but not envisioning future plans can get to you.

This morning I logged into facebook and one friend had a baby and another friend just closed on a new house. We didn’t have long term plans of staying in the house we are in, it was really just a stepping stone to bigger and better things. When your family is hit with cancer, there is this surreal thing that happens….Your life pauses and everyone around you keeps living in forward motion. You are just trying to survive and all of a sudden it seems like everyone else is focusing on things that are in a complete different universe. Your friend complains about her husband leaving his dishes or dirty laundry laying around and you have to just remember that months ago that would have frustrated you too but now it sounds so silly. Things people get mad about don’t carry the same weight in your mind as they used to. You want to tell people to either be happy or find happy, but to stop wasting their life being annoyed with things that really don’t matter or with striving for things that aren’t really going to bring them happiness anyways.  Everything that was once familiar now feels a lifetime away.

I’m going to jump around a little bit with this blog post. Stay with me.

In direct sales, there is always talk about your “Why” I’ve heard many times in different companies “What is your why?”  I’ve never thought a lot about it because I felt like mine always fell under the same general topics – financial security, providing for our kids, having something for ourselves, etc.  There is a wait list of about 12 weeks right now to become a LuLaRoe Consultant and I’m 6 weeks into my wait. My only why at first that I could pin point was that I didn’t have an answer to “Why not?”

I have tons of why’s in many little categories and I realize that as life changes, why we do things also changes, but my big deeper why hit me so powerfully this morning that it brought me to tears. Someone said to find your why keep asking why deeper. When you are brought to tears, you found your why. I thought that was silly until this morning when I was sitting at the computer and it hit me…and the tears started to flow. Not sad tears, just emotional tears. Then I felt kinda silly.😉

My big why in starting my LuLaRoe business is simply to hit PLAY on life again. To stop living on PAUSE.

I don’t know when I will find the time or where I will find the energy, but I am really excited to start having weekly sales in my facebook group and home popups with clothes that have brought some excitement into my life again.  I’ve already started my facebook group and have been enjoying doing giveaways.  More than anything, I have always just wanted to make people feel happy and loved…whether it was inspiring them to do something they didn’t think they could do (even if it is just getting through another day) or giving them a gift to show that they were thought of. LuLaRoe is giving me an outlet to do more than I’ve been able to do from home this past four years. It’s giving me a vision of future plans again. Hopes, goals, excitement.

I promise to get my camera out and get you all some updated pictures of our family soon. There isn’t a lot to update on Mike healthwise. He continues the same steady decline, but  somehow he is still here – so it feels impossible to put it into words. It still amazes me that this month we have been in this crazy brain cancer battle for 4 years. The only way I can simply describe how he’s doing is like a dementia or alzheimers patient.  He is still unsteady. He falls often and requires a wheelchair if we attempt to go out in public. Going out overwhelms him. He gets pretty bad headaches and can’t process too much happening at once. He can’t do simple tasks like open a granola bar, brush his teeth or get a drink of water. He definitely can’t be left home alone and has gotten too feisty to be left with the teenagers alone.  I’ve noticed lately that he can’t seem to remember our kids names. It isn’t a big deal, they know they are his “big girl” “little girl” “big bubba”and “the littlest girl.” He knows them, he just can’t seem to recall their names.  He adores the grandbaby but he still calls himself “Daddy” to her. (Remember the Video when he realized he was Grandpa? So sweet.)  He can’t seem to comprehend who she is, but tonight he did ask me “Who is this baby?” He knows she is part of our family and if she isn’t in the room he worries about her, but he can’t recall where she exactly fits into the family.  To him it doesn’t really matter anyways. He just loves her.

www.facebook.com/lularoeshaunaemmons


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