One patient with glioblastoma still alive nine years later
by future2020 on Wed Jan 16, 2013 02:16 PM
I buried my husband yesterday.
Today is 1/16/2013 and I buried my husband yesterday in his home town. As a U.S. Marine, Master Gunnery Sergeant (E-9), he received full military honors (21 gun salute, 6 Marine Corp pall bearers, Bag piper and Taps with a live bugler, and more).
My husband fought so hard and kept so much of his pain away from me. I simply did not know he was not only battling GBM, but also has pneumonia and Shingles due to his weakened immune system. I kick myself for being so clueless. He protected me to the end, not letting me know just how sick he was and how much pain he was in.
1/6/2013; my husband was admitted to ICU at Walter Reed Military Medical Hospital in Bethesda, MD. He could not stand and no longer wanted to use his walker. He would stop himself from drinking so he wouldn’t have to get up and use the restroom. I realize now he was shutting down and slowly dying before my eyes.
When the hospital wants to monitor the brain, they do not give any pain meds, so that they can REALLY see what is happening in the brain. They found massive hemorrhaging visible around his tumor. His platelets were low again, which contributed to his brain bleeding. They gave him four bags of platelets – bringing his count up to 101. We consulted with Neurologists – based on the fact that my husband still could not manufacture his own platelets. The Neurologists told us that a 2ndbrain surgery was now permanently off the table – due to the vascular nature of his tumor, he would bleed out on the table and die during surgery. The treatment option was more radiation, but surgery to remove the Beast would never happen.
If he could not verbalize his wishes, I had the legal power to stop or continue life-saving treatment; I can honestly say I would have continued treatment – selfishly wanting my husband with me and alive as long as possible, even if he were not conscious.
1/7/2013: Once the platelets were given the bleeding stopped and my husband was once more coherent/conscious, but still in terrible pain. Yet, his CT scans were no different in terms of the amount of blood and swelling in his brain. My husband understood that the second surgery would never happen. He spoke with the doctors and neurologists. His pneumonia was winning and there was an infection in his blood. Doctors wanted to place a tube down his throat so he could breathe better. After apologizing profusely to me, our children, and even his own brother (all present in ICU) he told the doctors he was “tired of fighting and wanted to die”. His words were clarified by the doctor. We were in tears but accepted his decision. For the first time in two days hesmiledat us. Given two shots of Morphine, he was then put on a slow morphine drip, and pain was finally easing from my husband. We said our goodbyes, spoke of the good times we all had as a family, held his hands, spoke loving, comforting words that “it was ok, we love you.” Once again my husband protected me by taking the life/death decision out of my hands and I will be forever grateful.
Six hours later my husband, my love, my soul mate, a mere 53 years old, took his last breath. He was smiling and at peace. The Beast had won, the pneumonia acting to speed up his death. My husband chose to go out of the world on his own terms, and I am proud of him.
I fly home today to mourn the loss of my husband, our life together, and the years we have been robbed of.
by Lorre_G on Wed Jan 16, 2013 02:44 PM
Your story is one we hear all too often, but your eloquent words and description make it even more real to all who are touched by the diagnosis of brain tumor. As a military officer, bravery comes naturally and through each step of his last days your husband displayed that same courage. What a true hero.
May you be blessed with peace and comfort.
by modesta on Wed Jan 16, 2013 03:55 PM
I am so sorry - having been thru this I know there is not much I can say to make it better at this point-
Praying for peace and strength
by GBMBGONE on Wed Jan 16, 2013 06:59 PM
I am so sorry to hear of your loss. Words can not express how my soul aches when i hear of another brave and strong warrior this beast has taken. I am so humbly thankful for your husbands service to our country. May u be filled with the peace and the strength to carry on.
by dmercer on Wed Jan 16, 2013 07:41 PM
Your post is so real and so honest. It is the very thing we want to be. To tell the truth about our situation. To hurt and cry and lament that this is not how life was supposed to turn out. To affirm our greatest fear that the beast has won. Yet, when I hear your words, I think that in some small way, the Beast didn't win at the whole contest.
"For the first time in two days he smiled at us.....pain was finally easing from my husband. We said our goodbyes, spoke of the good times we all had as a family, held his hands, spoke loving, comforting words that “it was OK, we love you.” Once again my husband protected me by taking the life/death decision out of my hands and I will be forever grateful....Six hours later my husband, my love, my soul mate, a mere 53 years old, took his last breath. He was smiling and at peace....My husband chose to go out of the world on his own terms, and I am proud of him."
Thank you so much for sharing your story. May the hope of a sweet embrace that shall one day be ours ease your sorrow. May you remember the man whose courage was like a flaming arrow shot into the future to guide you and all of us home.
Grace and Peace, Danny
by vwxyz on Wed Jan 16, 2013 10:38 PM
Future 2020, No one would have any doubt you rose to the challenge and did all you could do with his care. Wishing you peace, grace, and secure memories in this time of grief. J.
by Bee_Rich on Thu Jan 17, 2013 02:32 AM
prayers and thoughts to you
by Brenda56 on Fri Jan 18, 2013 04:45 AM
by loveiseternal on Fri Jan 18, 2013 02:30 PM
So sorry for the loss of your husband.
I have followed your posts for the last couple of years, as you were also receiving treatment at NIH, as we were.
I lost my Randy almost 7 months ago after a 28 month battle. I do not view it as the Beast winning when your husband was so valiant and you were by his side.
Yes, GBM is brutal and improvements in treatments are sorely needed, desperately needed.
God bless and be easy on yourself as you are now at the base of another mountain, this one called "grief", Sally
by niallsmum on Fri Jan 18, 2013 03:41 PM
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