Tag Archives: Brain cancer
I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.
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.
Sometimes you just have to step away from everyday life. We spent a few days at Great Wolf Lodge in Williamsburg. Between the wheelchair for Mike and him not being able to last long or be left alone, the baby, and Kenzie wanting to play – I couldn’t have done it alone! I’m thankful that I have family that helps. He struggled with not feeling well and wouldn’t have been able to walk around so the wheelchair was a must, but he wanted to be where we were. When I was in the water with the kids, I’d often look up and see him there in his wheelchair with a big smile and waving at us. Great Wolf Lodge is the perfect getaway for us because Mike can go back and forth between napping and the fun. It’s pretty close to home and the hospice company is able to set up a backup plan close to the hotel if he needs medical care while we are there. As long as I have enough people around to help, the kids can just have fun all day and Mike can pop in and out of the fun as he feels up to it. I already can’t wait to schedule another trip to GWL!
Look at our crew!
I’m enjoying being a Scentsy consultant because its something I can do mostly from home and it brings in a little bit of income. (and it brings in a lot of my favorite product! lol) I’m thankful to have some busy work to do this morning as I sort orders and organize parties. I’ve always been one to stay busy, so not being able to leave the house due to Mike’s health is a huge struggle for me. At one point in our marriage, Mike was deployed to Iraq for a year so I was raising the kids alone that year, I worked full time, and attended college online full time…since then I have learned to find a healthier balance of not always having to be so busy, but I still don’t do well staying still for long. I’m constantly tempted to continue my college education online again, but with our teenager having a baby coming soon, I just don’t know how much I can handle at a time. Life is guaranteed to be busy for awhile. I’m so guilty of taking on too much and then being overwhelmed. I’m thinking maybe I actually haven’t found that healthy balance because as I typed that I thought “I should do it, I should sign up for classes online!” It’s hard because I know I need to be here to take care of Mike now and he can’t be left alone, but I also struggle with all the uncertainty in my future. Looking back, none of my “future” plans have ever worked out the way I intended them to. I can’t help but feel like I should be doing something now to plan for the future…but I don’t know how to plan for the unknown and try to set a foundation for anything when my entire life is on pause in a way as unsettling as the sole provider having a terminal illness… Mike has always been the financial stability in our family, even when I did work full time. Being a military family and moving often, that’s just how it played out for us.
Mike is doing well. I’m amazed daily at the fact that he is alive and he has been out of bed every day for at least 4 hours for the last couple of weeks. Some days he’s up for an entire 9 hour day. He does have some days when he sleeps until evening, but he hasn’t slept all day for days in a row lately like he has before. His confusion is bad some days, but he has never forgotten who are are, so I know it could be worse. Just last night he was trying to convince me to buy him a motorcycle even though he hasn’t driven in years. He had a fall earlier this week and feels like he bruised a rib. There is no keeping him still though, he is determined to walk around in the yard every day.
As much as I might get sad or frustrated with the situation, deep down, I always know that it is an honor and privilege to take care of my husband.
I don’t want to ever feel like I glamorize brain cancer, or that I make it all look like it was all rainbows and butterflies. I focus on the good in life, so its natural for me to want to share the good, but I try to be intentional and honest in sharing the reality of the bad days of brain cancer too. If you have read my posts you know that I have such a thankful heart and that I do feel honestly blessed, even with this hard life we are living. I try to share the hard stuff, but I never quite feel like I can find words to even scratch the surface of how hard the days can be. I don’t usually blog unless I feel something really heavy on my heart, and this morning I have that feeling. Someone needs to read this. I’m not exaggerating when I say that some days I have thought that the days are impossible. Psalm 30:5 helps me in those times when I feel like life is just darkness and I need to cling to something to get me through the darkness. God promises us morning after mourning. I’ve experienced many seasons of darkness and mourning and have eventually seen the joy of a new day or new morning of joy. I hope that makes sense in the way I worded it. I know that there tends to be a theme throughout my blog and that I tend to share the same things more than once, but I just share whats on my heart when I sit down to write. I know that people don’t always read back to previous posts, so I write about what I think someone needs to read today.
I know how it feels at diagnosis to realize that only about 2% will live to see 3 years. The odds have always been against us, from the moment we were given the diagnosis. I’d love to say that it is because of prayers Mike is here, but I’ve also seen mighty men of God who were surrounded in prayer die from GBM. I’ve seen a child cry out in prayer to God asking God to save his Daddy in front of a church full of people in agreement. I don’t know why those prayers weren’t answered, and I don’t try to have all the answers on healing. I’ll be honest, there have been times that I’ve thought “Wow, if God didn’t heal that mighty man of God, then we don’t have a chance.” I learned really quick that being worthy or not has nothing to do with it. God’s plan is not something we will ever understand. Dying from brain cancer means that there is the joy and peace of heaven ahead for that person. There is sorrow for us who remain on earth, but pure joy for those who enter the gates of heaven.
I know how it feels to have the diagnosis in your family and to have to wonder if this will be the last summer, Christmas or birthday together. I know how it feels to want to climb in bed and pull the covers over my head and not to want to face any of this. I know how it feels to think “Next year at this time life will be different and he probably won’t be here.” Mike was never expected to live this long. I’ve always tried to find a healthy balance of facing reality and trying to prepare myself for the worst while also having a healthy hope for the future and for healing and restoration. I have already chosen a funeral home, cemetery, casket and prepared his dress blues. Trust me, I don’t take this time we have had for granted. I realize what a gift each day and each good moment is. We have experienced 41 days of radiations, 2 years of constant chemo and weekly doctors visits knowing that we would never ring that bell in the cancer center like so many patients do after completing their treatment plan, (Glio famililes, you aren’t alone!) decadron, anger, weight gain, then 100 lbs of weight loss, seizures, falls, ambulances, swelling, incontinence, hospital stays, feelings of isolation, confusion, short term memory loss, sleeping for days, Mike not even speaking a word for 8 days at a time, and all kinds of daily battles that I can’t even put into words. I have been home bound with my husband for weeks and months at a time, not even being able to drive my kids to school, go grocery shopping, or take them to appts because he couldn’t get out of bed and couldn’t be left alone. Hospice has brought us some calm in the storm. So when you see my posts about being happy, blessed and thankful, know there is so much history behind why I’m so happy and thankful for a good moment. Please, if you have a good moment with your loved one, be in that moment…grab a camera a capture it. Don’t let the reality of this diagnosis steal a single moment that has the potential to be a moment of joy.
This last week we spent a week at a beach house with a pool in the Outer Banks and it was so amazing. We are so thankful to The Semper Fi Fund, Dreams for Veterans, and Seaside Vacations for their roles in making the week happen. Mike faces so much confusion, pain, and scary days, so seeing this spark in his eyes and pure happiness on his face says more than any words than I can come up with. For years we felt like we didn’t deserve to request a dream, so we never did request the dreams that Mike initially had in mind. Initially when I brought up the idea of submitting for a dream, Mike talked about how he always wanted to see Montana (so random, lol!) or go to a Saints game and have a meet and greet with Drew Brees. Meet and greets require travel, so now that Mike is at the level of functionality and comprehension that he is at, travel isn’t a good idea for him. Once he reached hospice I was inspired by seeing a few other families who made their loved ones dreams come true. I realized that I wished we had requested it earlier and I wished that we would have done something when he was more able. I also realized that his dream at this moment is simply to spend quality time with his family, so we requested to spend time in a house at the beach. I realized that requesting a dream wasn’t taking advantage in a bad way and it was silly to feel like we didn’t deserve it. All summer he has wanted to get out and do things, but he doesn’t last long once out of the house, so I knew he needed a get away that would allow him to rest when needed. I did some research to find a house with a pool because I knew that we wouldn’t be able to leave the house much and the kids would need to have an outlet for their energy. I always feel guilty asking for anything, but I told myself we do deserve to try to squeeze a lifetime of memories into whatever time we have left.
If you have airline rewards, but not quite enough for a flight, you might want to consider donating them to The Dream Foundation!
Watch for photos in September of our week long beach vacation during the last week of summer before the kids start school! “Follow” the blog if you haven’t already so you don’t miss anything!
Life is exciting this month! We are blessed! Mike struggles and has bad days but he has good moments.
Please support my new business as an Independent Scentsy Consultant. I’m his full time caregiver but this might give me some extra cash for my family and give me something to feel productive about. As a new consultant I’m supposed to start my presentation with why I decided to become a consultant. Look at my personal stockpile of scentsy! That’s one reason why! I will be my best customer!! Haha
Mike enjoyed the party. There was cake. 😉
I also wanted to post a link to a video that Shutterly Sweet did for us of the gender reveal party! I loved all the details she captured!!!
With so much going on, it’s a good time for an update. Kayla will become a mommy this year (she is 20 weeks and 5 days) and graduate high school early with an advance diploma, at 16 years old! Cameron starts high school this year and Kenzie starts first grade which will be her first year in a public school. I’m just busy…well… with all that. 😉 Kayla’s 16th birthday was spent getting Kayla’s makeup done, having lunch and then just hanging out taking photos and I wanted to share the photos I took. These photos make me want to do photography again.