Glioblastoma Survivor 2015 – September

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.

Glioblastoma Survivor 2015

Seaside Vacations - Dream Foundation

Seaside Vacations - Outer Banks

2015.05.22-1-2 IMG_8758 IMG_8836 IMG_8857 IMG_8958

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If you have airline rewards, but not quite enough for a flight, you might want to consider donating them to The Dream Foundation!

http://www.dreamfoundation.org/giving/


2 responses to “Glioblastoma Survivor 2015 – September

  • arlyn

    So glad you had family time at the beach. You are in my thoughts every day.
    Arlyn

  • Edith

    Hi Shauna, i just wanted to leave you a message. Your message is very inspirational. I want to thank you. I have a mom who also has a Glioblastoma. It has been a little over two years since her diagnosis. She is also under hospice care, it has been very difficult to deal with it. Your message hit home for me, because i am one of those daughters praying faithfully for a miracle and it is not happening. I would like to keep on tuch with you, if you dont mind. Thanks so much.

    Edith

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