November 2013 – Glioblastoma Update

There isn’t a lot to update on.  I could say that Mike is doing really great, or I could say that he has suffered every single day for the last 17 months – and both comments would be true.  So that makes updates pretty hard to put into words.  His daily quality of life is something that I’m pretty sure no one would want to experience.  So as you can imagine, trying to figure out what to share and what not to share is really a struggle.  I can say that there are moments while watching football that he seems to almost be the same old Mike that he was before he got sick.  I love those glimpses of him!  He even musters up the energy to do a little victory dance once in a while!!!!!  I have a new love for football and for the New Orleans Saints just because of the way it can lift his spirits once a week!!

I’m not sure what day he is on of his chemo cycle, but with 21 days on and 7 days off his body barely gets a break before the next round starts.  He’s on a round now and will finish it right before going to Duke on December 10th for his next MRI results and to decide on whether this treatment is making a difference or if they want to try something else.  There aren’t a lot of medical options for treating GBM, especially since his new tumor/cancer growth is inoperable.  Standard treatment is surgery, radiation, & temodar….and now Avastin is often added at the end stages which can add months to someones life, but we made the decision to start Avastin right away. Even with all of that and the added treatment of Gliadel wafers, he is already fighting a recurrence already…so that’s where we are at.  Fighting it.  His current treatment is still Etoposide 100mg daily for 21 days on and 7 days off, and Avastin every two weeks.  He is also on other medications including 3000mg of Keppra daily for seizures.  He had the Grand Mal seizure in March and we are happy to say that he hasn’t experienced another one since.  Anytime he has felt seizure activity coming on, or anytime that I notice that something seems off, I will give him his Keppra dose, even if its a few hours before it is due, and/or Ativan.  His vision is another thing that seems to be worse at times.  Sometimes everything is more blurry than other times.  The location of his tumor would play a roll in this, but it is also a known side effect of Avastin, so we don’t really know the cause.  He has been pretty steady lately and doesn’t need to use his cane usually.  It helps at times. 

As for me, overall I feel like I am in a really good place emotionally.  I have had days, weeks and months where I absolutely have struggled emotionally.  Things aren’t going great, but I am choosing to see the greatness in everyday little things….if that makes sense.  There are moments in the day that are hands down glorious moments, even in the midst of a storm.  There are still moments that I want to throw my hands in the air and say “I can’t do this. Life is too hard.  Life is too painful.”  But then there are moments that I can honestly say I feel incredibly blessed and that I feel like life is so beautiful.  Its a roller coaster, and I have extreme ups and extreme downs.  I just go with it, and when I’m down I just hold on and know that there will be another up.  Sometimes I have to really commit to seeing the opportunities to smile or laugh, but when I really look for those moments – they are there, and I can find the joy in those moments.  I’ve had days where I couldn’t find it, so I guess that’s why I really feel the necessity to share that.  Its hard to find hope when you feel hopeless.   When life is crumbling around you its hard to believe that things will get better or that you can pull yourself out of a hole of depression.  I just think of those moments as a passing night, and morning will come.  I try to remind myself that I just need to look for the blessings each day and I try to concentrate on them.  There is always something to be thankful for and that’s what I choose to put my mind on.  Its a good coping strategy for me. 

I appreciate the visitors that Mike has been getting on football Sundays!!! 

5 responses to “November 2013 – Glioblastoma Update

  • Linda Thibodeaux

    Shauna, you express your thoughts & feelings very well & because you do it gives everyone a glimpse & picture of your family’s very real struggle. We can only imagine how really difficult this has been & is for all of you who love & cherish Mike. Your posts keep us aware of how very important & vital it is to keep all of you in prayer. A few days ago my husband was praying for your family & God showed him a scripture to claim & pray for Mike.
    Psalm 41: 1-3. Blessed is he who has regard for the weak; The Lord delivers him in times of trouble. The LORD will protect him and preserve his life; he will bless him in the land & not surrender him to the desire of his foes. The LORD will sustain him on his sickbed & restore him from his bed of illness.

    Many are praying & holding your family in prayer. Praying you sense God’s presence & love everyday & in the hardest of times you will know He is sustaining you for He has promised He will never leave you & will always be with you!

    You are a courageous woman of faith. Courage does not always roar but @ the end of the day says, we will continue tomorrow.

    • shaunablogsphotostuff

      Thanks for the comment and the encouragement. I’m so thankful that we have people praying for us.

      • Joyce Hicks

        shauna this is my friend Linda my dearest ever and her and her husband Filton have been leaders is church but more importantly prayer warriers ….they took mike to church as a young boy and have been apart of my life ever since ….they have always been there for me and are now on MIKE’s team… and GOD Knows who prays and who don’t He is ONE and me that means everything and this scripture is uplifting and confirms our best wishes for Mike so thanks Linda I love you so much and shauna you can take it to the BANK…..Ha ha

  • 44mom

    Thank you for sharing this blog. I was diagnosed 4 weeks ago and your blog is really helping me. I will pray for your family too. Sorry I talk a bit off after surgery but hopefully this worked.

    • shaunablogsphotostuff

      Many many prayers your way for healing and restoration for you!! Hang in there. Its a rough road, but this diagnosis has honestly made me cherish life in a way that I have never done before. I cherished life, but not to this magnitude. Don’t lose faith and don’t lose hope. Reach out when you need help. Cry when you need to. But make sure you find the joy and humor that life has to offer as well. I pray that you are surrounded by peace and joy during this time adjusting when it can so easily be so depressing. (((hugs)))

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