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. 

12 responses to “

  • Blake and Taylor King

    You are a damn good wife mother and grandmother you have so much strength you are defiantly an angel sent from above keep that head held high and know that you and mike are an inspiration for the rest of the world to see your love for him and those kids is absolutely amazing please let me or Taylor know if we can ever do anything for you. Much love and God bless we will keep you in our prayers.

    The King family

  • Kathie

    I have followed your blog throughout my Dad’s dx and you express your reliance on God and your faith so beautifully. It is a struggle and this disease is a beast. Lifting you and your family up in prayer. This is the verse I came across this morning after reading your blog: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal” (2 Corinthians 4:16-18).

    • shaunaemmons

      Thank you, that is a beautiful verse to hold onto!

      • Pamela

        For those of us who follow your blog and your family, you give us all hope and remind us to support each other. Thank you for being an inspiration to all of us and saying what we find ourselves thinking but are not sure how to articulate. I hope all is well with your family.

  • Pamela

    I am just beginning this whole GBM nightmare with my husband. I wish for long term survival, although in GBM terms that may ultimately be defined in months. I have been concerned with what radiation and chemo are doing to his body and what that means if he is one of the few to make it as long as Mike has managed to keep this horrible cancer at bay. We finish up with the 6 weeks of radiation and chemo combined on August 8th. I guess the MRI after that will give us some idea of what is next. We go back to Duke at the end of August for that discussion. Hoping for a miracle. It is good to know that I am not in this by myself. On those tough days, always remember that you are not alone either.

  • shaunaemmons

    There are a few survivors I’ve heard of that don’t have the damage…I’m hopeful for your husband.

  • Susan

    You inspire me. Seriously.

  • Cat

    Oh…how I appreciate your honesty and realness. My husband is entering month 39…we are in the care of hospice…he is one of the “lucky” ones…and every day is hard…and the next one sometimes harder…and we are grateful, and hurt at the same time due to the “beast” of GBM. You are honest and thankful at the same time as we are… That is the reality of life, of this side of heaven, of taking it day by day. Of GBM.

  • Ce Canada

    Thank you for being truthful. Truth is not always pretty.
    If you were not and those of us in your shoes read that you were ONLY seeing the bright side, then how guilty we would feel on our days of despair? My husband has only been on this journey for 6+ months (with reoccurance last month), but with a seizure few weeks ago, I’m now confined to house (even working from home). Can barely get out of house to feed our animals. We live in country, so having someone bring us groceries I feel like is a burden to them. So I rarely ask. Yes, he’s able to function, but he doesn’t want to leave the house. GBM is a beast.
    Thank you so much for keeping it real!
    God bless you, Mike and your entire family.

  • anon

    I’m sorry you are facing this. All I can say is you are an amazingly strong woman for continuing to endure through such a difficult situation and trying to make the most out of it!

    I saw how drastically brain cancer affected my Grandma, who was a spunky, energetic, adventurous woman and passed away within four months of us noticing something was “off.” I’m currently struggling with the “surviving is enough/ life sucks” scenario since my husband, who has mental illness, has been in a manic episode with psychosis for four months now (medication compliance is an issue with him and he has been significantly ill for about half of our 7 year marriage).

  • Deanna Mayo

    I came across your blog one day about a year ago and have continued to follow it. We are just over 2 1/2 years out with my husbands GBM and yes, we have cognitive defects from the treatment as well, although not to the extent of what you are dealing with. I hate to say but it is nice to hear someone else not feel totally thankful and blessed everyday because as much as we want to be, it is a hard life. We have had to deal with three surgeries, a lung embolism, numerous infections, spinal taps, the removal of his bone flap due to infection, worry about bumping his head as he wont wear his helmet, and most recently a seizure. Every day is different – some days you think he is doing really good and then the next day you question if the tumor is back! Right now we have been on a “medication vacation” for the past few months. The Avastin was really screwing with his mind, body and memory on top of the radiation damage. Things have improved to what we say is our new “normal”. I do feel blessed compared to what others are having to go through but know that any day could change. I am so sorry to hear about the hospice issue. So unfair and just another hurdle to deal with. Insurance/disability/hospice rules—all having to deal with people who have no clue about the illness. I hope your blogs are some comfort to you as they really do help many of the rest of us that are in this un-asked-for club. Take care.

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