September – 2016

I’ve received some really powerful messages from people who have stumbled across this blog after their loved ones were diagnosed. If it weren’t for those messages I would have probably quit blogging by now. It’s really hard to pour your heart out knowing that anyone can read it..but then I get a message from someone who says that my words made a difference in their day and it reminds me why I continue to blog.  There isn’t a lot to share at this point because not much changes day to day.

We are in a very frustrating place. Mike sees his oncologist once a month for medication refills. It’s hard watching him struggle each day and knowing that I can’t do anything to improve his quality of life. On a typical day I wake up and go to sleep with the first and last words I hear being “I’m not doing good” or “My head hearts.” I wake up and walk straight to the medicine knowing he’s going to continue to repeat the same words all day. He often holds his hand on his scar and asks “What happened to me?” I can’t even put into words how deep my heart hearts knowing I can’t fix this. There’s no doctor I can reach out to who can give us hope.  I have never been tough enough to see people in pain.  I am thankful Mike is here but I wish so badly that he could have more good moments.  I wake up in the morning praying “God I can’t even get out of bed until I know you are going to get me through this day.” Before I go to sleep the prayer is usually “Thank you for today and for getting me through.”

The kids are all doing great. Our oldest is working full time and is starting classes at the local community college. I’m so proud of her for pushing through and graduating early and starting college as a teen mom.  At 17 she is one of the strongest people I know. Her baby keeps us all on our toes. She started crawling and standing at 7.5 months and hasn’t stopped moving since. Our son is doing well in high school. Our lifestyle has changed drastically since before Mike got sick. We used to be a very active family and now our days are spent mostly at home, so he spends a lot of time in his room.  He loves video games and his favorite class in school is one where he learned to program video games.  Our youngest daughter is always upside down these days since starting gymnastics last year. Any given moment that you walk into the living room she is likely to be upside down in a handstand or doing a cartwheel. She also started riding lessons recently.

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I’m working full time from home as a LuLaRoe Consultant. I fell in love with the clothes and the company and saw it as a great opportunity to work from home. I’ve transformed our loft into what I call the LuLaRoom.  Most of my business is done online and it has been successful so far. I’ve been able to model my business focusing on customers online since I’m not able to do in person sales as much with our home situation.

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Some days I feel guilty for the time I spend on it, but I also know that our kids need me to have an established income since the future is unknown with Mike. I know that once Glioblastoma is diagnosed that it’s expected to grow back. I’m still praying for healing and restoration.

I joke about Mike’s midnight snack attack. Seriously, as soon as I feel like I can crawl into bed and get some rest, he’s up rummaging through the cabinets for food. I’ve started to really push yogurt, fruit and vegetables…he usually wants chocolate.

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Donut Friday’s are still his favorite. We can almost always get a smile out of him over a donut. I have a huge heart for giving…Mike loves donuts…I love LuLaRoe…He is back at the oncologists office he has been with since 2012…so naturally, we showed up at the last appointment with Krispy Kreme for the staff and a donation of comfortable buttery soft leggings for the infusion center patients. I’d love to take more – not only to the infusion center, but to the children’s hospital and hospice center. Being a caregiver and finding comfortable stylish clothes was a big deal for me so I would like to pass that on. I love the idea of both cancer patients and caregivers being comfortable and knowing that someone cared enough to give them a gift.  When you are in these situations, any good deed can be wind in your sales to get through another day. Just to know someone cares enough to go out of their way to do something for you. I can only give so much. There was a time I told Mike “You can’t outgive God.” He said “Yeah, but are you outgiving our bank account?!”

If you’d like to purchase a pair of leggings, shirt, or outfit for a donation – just fill out this form and I will email you an invoice to sponsor a pair. I will take them directly to the patients. My focus this month will be the children’s hospital since September is Childhood Cancer Awareness Month. I will take leggings to both kids and their moms.

 

 

 

 

 


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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