Last January I wrote several posts about my husband’s brain cancer. Things seemed to be going well enough.
Unfortunately, in late March, his MRI showed some re-growth. He was, statistically, pretty much average for the number of months one with Glioblastoma undergoing the Optune treatment lives without a recurrence.
So we sought out a very experienced surgeon in Oklahoma City to discuss surgery. Dr. Michael Sughrue is a neurosurgeon experienced with Awake Brain Surgery. He and his team of physical and speech therapists were able to assess his speech and hand activity during surgery in order to minimize the effects of surgery on those brain functions.
I imagine I will post more about our experiences during this time in the future, but that is not the purpose of this post.
18:18
This post is to record that my husband’s incision from that second brain surgery became infected about two weeks post-op. So if you are reading this and wondering how he is doing, I am sorry to report that his body could not fight that infection. He was declared brain dead at 18:18 on April 20. I intended to go into more detail about this experience in this post, but I find that I am not quite ready.
I moved about a month ago in order to be closer to my parents, closer to my kids’ schools and to give each kid their own room. To give us a bit more breathing room as we grieve. To give us a bit of space from the memories at our old house.
Every day when I walked through the front door of the old house, I remembered coming home and seeing him throwing up on the front porch the day before he died. Part of my mind started to drift to the ambulance ride and the ED visit. The stay in ICU. I just can’t dwell there every single day.
Work and Workouts
Next week, I am reducing my hours at work again. I will be taking some time to unpack at the new house. Taking some time to get my paperwork caught up and filed away.
I am also moving my workouts from the evening time to the day time. My 3 year old has developed some anxiety when I leave the house at night.
“Are you leaving, Mommy?” he asks me every night now. So now I can start to reassure him that, no, I am not leaving tonight. I have to keep working out though. It is kind of a mental health thing. The endorphins really help me keep from feeling down. So now I’ll just workout during the day.
I’ll take more naps. and when I’ve got that routine in place, I’ll start writing more blog posts. I have grand ambitions of creating a following here. Creating some opportunities here. My day job doesn’t quite fulfill me the way that it used to. So we’ll see what blogging does for me.
Share
So if you want to know more, share this post and encourage me with the page views. I’d also love to hear your thoughts below, if you are inclined to comment.
Have a blessed day!
~Amanda
Writing is a form of therapy, this is a great idea Amanda and it gives us an opportunity to hear about you & the kids
Thanks, Susie. Looking forward to sharing.
Thank you for sharing. I am thankful that the kids have a mom who recognizes how much they need and want you around. You and the kids are figuring out what the new “normal” is. The kids can light up my world with smiles and hugs. Loving someome doesn’t simply have a power button, you can’t just flip a switch and be fine. Everyone says healing takes time but in the same breath they say time flies. Reading the newest blog helps me to know where you are coming from. I am happy that you are able to get a grasp on what is happening. I am also sad because none of this will be easy. It won’t be easy for you, the kids, extended family, or friends. Keep calling me from time to time. Hearing your voice and the noises from your household fill me with pride. I love you lots and lots.
Thanks, Karnesa. Yes, healing takes time also, but healing/grieving also takes work. Lots of mental, physical and emotional work to find that new normal and learn new habits and patterns. Love you, too!
Stumbled across this while doing research. Took my breath away, too young, so sad. You are so strong to share this with the world. Best wishes.
This will be cathartic for you as well as helping others in your situation! There is a normality about your experiences during this time that will give understanding and comfort to those who may have the same feelings but are not able to express themselves as well as you! You are loved and blessed❤️
Thanks, I am looking forward to sharing my experiences and, yes, helping and comforting others!
May his soul Rest in perfect peace in the bosom of our Lord Jesus Christ! So sorry for you loss and I admire your strength. Looking forward to meeting up next week.
Thanks, Amaka. I am also looking forward to having lunch next week.
Good to write as stated above and am sure this shared will help others going through their loss of a loved one too❤️
No one knows when one will be lead to walk the same walk and each one grieves different.
One Day at a time in God’s Grace ✌️❤️
Thanks, Kathie! Everyone does grieve differently.
My dad has a glioblastoma stage 4 an he got it just before Christmas he had surgery but they couldn’t get all of it since it was on his brain steam so it’s been a couple months but just couple weeks ago he went for mri an the tumor has come back an strong an he’s been showing a lot of the symptoms already for the past two weeks it’s hard to watch an hear it’s not easy to see family go threw that pain
Elizabeth, I am so sorry to hear about your dad. It is indeed so very difficult to watch your loved one in pain.
Amanda, my husband is diagnosed with glioma as well – the genetics look more like GBM but we are taking it a day at a time and living our lives, enjoying each sunrise. My sister’s husband (unbelievably) died of GBM in September of 2017. I’ve been reaching out to women facing this and similar situations to learn how they survived it and to hear what they wish they had known along the way. I am looking to share their stories – stories of faith, courage, hope, loss and love. If you feel you are ready to talk, please let me know. I think we can all learn from each other. Peace, love and healing to you and your family.
Hello,
My dad was just diagnosed with glioblastoma. He is 78 years old. The diagnosis came after removal of the tumor… the part they could get.
Have you assembled the collection of women’s
stories? My family of origin is ripping apart. I’d love some support.
Thanks,
Robyn
Dear Amanda,
I came across your blog when researching glioblastoma. I’m sorry for your loss. I hope right now you and the kids are doing alright.
Thank you for sharing your experience. My husband is suffering from glioblastoma as well, he had his first surgery last February 2019 and second surgery this February 2020. Needless to say, he also losing his battle against gbm… After 2 surgeries, the tumor kept regrowing and growing fast. He is in his final stage right now. I put him in nursing home as he can’t move anymore and there is nothing else we can do. I’m hoping he won’t be in too much pain.
I know you may not read it, but thank you for sharing your experience. May God always protect you and your family.
Thank you for your comment. I know this response is years after your comment, and that you likely won’t read it, but I thank you also for sharing your experience. My kids and I are doing well. Just moving forward in life. God bless.
Just to give you a positive feedback:
I was diagnosed in 2019 28th of February at the age of 60 at the time. In the first hospital, I was in The Professor refused to operate on me, saying “why for such a short time?”-and only wanted to take a biopsy.
So my wife and our son (2 year old at the time) simply took me to the main neurological hospital in Budapest, HU (called OKITI at the time) and I was operated the next day, then I had the standard therapy (Stupp protocol) and I also followed what Dr. Ben Williams (the longest glioblastoma survival) suggested, that is called brain tumor cocktail, and nowadays feel great, while trying to lose some weight.