One patient with glioblastoma still alive nine years later
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by LiquidxAngel - August 05 at 3:59 PM
The obvious major symptoms of the tumor did not appear gradually for my father. His personality didn't change and he had no symptoms of the aphasia until the night before he was admitted to Hopkins.His only symptoms were with "eye floaters" which had developed a year before his diagnosis. The eye doctor simply said it was ocular degeneration and was normal for people as they age and strain their eyes. He also had a mini-stroke that he never told me about in that time frame as well. I wonder now if it really was a stroke or if, instead, it was a seizure brought on by the tumor.
Regarding the palliative radiation, I was informed by my father's radiation team, the WBR was a last ditch effort to bring the tumor under control and move forward with other treatments. His neuro oncologist said that sometimes the WBR can have a "delayed reaction" versus "instantaneous improvement". Sadly, that never happened for him.To compound an already awful situation, I had very little help in terms of familal support.I imagine the severity of Peter's confusion and immobility are directly related to WHERE in the brain the tumor actually is. I cannot remember what real, recouperative sleep feels like anymore. It hasn't improved since my father's passing, either. I imagine that I am suffering from complex grief and caregiver PTSD from the experience. Feel free to discuss, vent, scream, and weep with us here. We are all facing hell on earth in this battle with our loved ones.*hugs*
by LiquidxAngel - August 05 at 6:11 AM
This sounds like I could have written it about my father (ver batim).It's almost identical to yours.He (my father) too was also diagnosed after several falls in the span of mere hours. The night before, we had been hanging out and just enjoying our time when suddenly, when he tried to speak, the only thing he could say sounded like gibberish (aphasia). He had a history of mini-strokes so that was (obviously) my first thought of what happened. After calling the paramedics after his second fall in the bathroom, I got the news no one ever wants to hear. "We discovered a large mass in your father's head."Immediately, he was admitted to the Hopkins BRU (brain rescue unit) and prepped for biopsy testing. Diagnosis: PCNS Lymphoma (diffuse b-cell) and it was severe.He had eight rounds of Rituxin/Methotrexate/Leucovorin chemotherap and was doing extremely well for the first few months. His personality returned. He was able to walk (albeit weakly) again and had a decent quality of life back. No more confusion (for the most part) or delirium...After the sixth round, I noticed the start of his regression. The next MRI showed that the tumor was no longer responding to chemo (Rituxin/Methotrexate/Leucovorin rescue)His Oncology team then sat me down and told me that there wasn't much more they could do to treat the tumor.Because he had ocular lymphoma involvement as well, he was not eligible for gamma knife radiation and so.... he had ten rounds of WBR (palliative).The steroids caused him to have a colon rupture and caused severe muscle decay. (only took about two weeks for the regression to become terminal). He was bed bound and that was when I made the hardest decision of my life to bring him home on hospice.I watched the tumor take away the strongest man I ever knew. My father AND my best friend. Both gone when he passed away.I had to set aside my selfish pain and try to give him the comfort and dignity that he deserved. I still wreste with many many demons from that period in my life.I'm sorry that you're having to wrestle as a caregiver in this battle too. It was/is a heart-breaking experience. Utterly.
by LiquidxAngel - July 20 at 2:12 AM
Like so many have said, we are ultimately the ones resonsible for deciding what is/is not best for those we care for. If you are not comfortable with the bedside manner (or lack thereof) of a doctor, keep looking for one who works best with the specific situation at hand (and with yours, personally).My father was tended at Johns Hopkins by an incredible team of doctors and nurses. I can't say enough wonderful things about them. They were always willing to sit down with me and explain things in a way that was less clinical and cold. They understood that despite the thousands of patients they treat, each person's unique and they come to them with their life and death hanging in the balance.And they worked with me on every possible level financially because my father had no insurance. They walked me through his disability paperwork AND making sure they got him on Medicaid. On the flipside of that, however, I have a friend I made though a brain tumor group on Facebook. She is battling an astrocytoma and needed her third surgery. She decided to go with a neurosurgeon known the world over but is not known for his kind bedside manner. Frankly, she said he was arrogant and a bit aloof but his professional record spoke for him.Sometimes, it's a catch-22.As far as I'm concerned, get three or four or five opinions on treatment. The more information you have, the better decision you can make. Wishing you and yours the best and I'm sorry you have to be a part of the ugly battle that cancer is.
by LiquidxAngel - March 05, 2014
On Mar 02, 2014 11:16 AM moonsilk wrote: It's so true,if we don't give our loved ones everything. We will have regrets that we didn't., My moms illness was just really bad from the beginning to end. We also drove an hour back n fourth for treatments n her doctors.,with her,everything that could have gone wrong just did. Becuz of her inoperable location,so deep in her brain stem. For me,I just needed her to live, I needed to be able to touch her hand n hug her. I needed my mother n I still need her. I guess the whole thing just haunts me now. Becuz I did everything opposite of what she wanted. She just wanted to lay in bed with covers over her head. I selfishly wanted her to get up n fight for me n my dad n her grand kids. My mom was so young. As a person I feel like I know nothing about nothing anymore
It's a horrible feeling :(
On Mar 02, 2014 11:16 AM moonsilk wrote:
This sounds like I could have written it about my father. They were *exactly* the same in dealing with it. I, too, pushed my father into making sure he got all his treatments and was solely responsible for making sure he got to all of his appointments.He was so tired on many of those days and I felt so awful for being the one to "make him" go for the treatments.Our battle seemed cursed from the start, as well.
He exibited no syptoms until out of the blue on a normal weekend (like any other) he could no longer swallow properly, started losing his balance, and could no longer speak clearly (it was all gibberish). Just like that. BOOM.
Thought it was a stroke and got him to the ER only to find out there was a mass w/lesions. Diagnosis? Primary CNS lymphoma. Advanced - a *VERY* rare and aggressive cancer. My father raised me as a single-parent. He was my best friend and confidante. When I saw him slipping away, I tried to keep him close. I was always telling him he wasn't allowed to leave me yet; that I still needed him in my life. Finally, I had to accept that I couldn't fix him. I felt so terrible - like everything I'd done was for nothing. I made myself sick by wondering if he thought me selfish for pushing him into treatments that ended up being useless. The ride to bring him from the hospital into home hospice was one of the worst moments of my life. He was such a strong man and it took *everything* from him. ... it's just so unfair to have people suffer like that.
by LiquidxAngel - February 03, 2014
On Jan 27, 2014 5:35 PM patsyminton wrote: Even though it's been 15 months, I still have terrible days. I work at the hospital that my dad had his cancer treatments and surgeries at and it seems like once every few months I'll have a flashback of certain days, certain memories. I get so sick of people saying "he is in a better place" or "everything happens for a reason." I guess this is more of a vent for me, I just feel like it shouldn't be this hard still. I just miss my best friend!
On Jan 27, 2014 5:35 PM patsyminton wrote:
Even though it's been 15 months, I still have terrible days. I work at the hospital that my dad had his cancer treatments and surgeries at and it seems like once every few months I'll have a flashback of certain days, certain memories. I get so sick of people saying "he is in a better place" or "everything happens for a reason." I guess this is more of a vent for me, I just feel like it shouldn't be this hard still. I just miss my best friend!
My father was also my best friend. He raised me as a single dad and we developed such an incredible bond.It's been a little less than sixteen months for me too. Your post hit on such personal chords that I needed to write to you.I still have terrible days. I think I will *always* have terrible days. Losing both a parent AND a best friend simultaneously, is a double whammy of grief and mourning. Vent as you need. Cry as you need. Do not let anyone else define your journey through your grief. Grief is singular and unique. While we all face it (at some point), every path to get through it is different.Just last night, I broke down for "no reason" whatsoever. The moment just hit me like a bullet to the chest. For hours, I just wept and talked to him as I would have normally. If anyone else could have seen me, i'm sure they'd have said I was losing my mind. Maybe, in that space, I was. It didn't matter. I just knew I wanted my father and my best friend back. I also have flashbacks of times during the battle. I had very little outside support and very few in the family came to help us. That broke my heart too. Of course, as primary caregiver, I struggle with *every* single decision I had to make for him... I hope you can find some peace but this road is a long, painful one. If you need to vent more, you can always message me directly. I'll listen and I'll not judge.
by LiquidxAngel - October 28, 2013
On Jul 06, 2013 7:14 AM Andyatto wrote: Thanks for the reply. I guess I'll battle on. It's very hard to find reliable information. Every little bit is beneficial
On Jul 06, 2013 7:14 AM Andyatto wrote:
This is a battle that I recommend you actively search out the best team that you can.If you are not happy with your current oncologist (from the sounds of it, I wouldn't be either), PLEASE, seek out others. There are great resources all over.It isn't an idle disease.(Sending you healing thoughts and prayers)
by LiquidxAngel - September 22, 2013
As cliched as it sounds, I actually thought I'd turned the corner on my grieving. Yet, in mere moments, I found myself a sobbing mess with that heavy pain of a broken heart every bit as potent as the night my father passed away.The nights are so still and so quiet. It is such a dark place where grief takes me.I suppose, what I'm trying to ask, is: "How did you find your peace and what ways worked best to comfort you?" Thanks everyone...
by LiquidxAngel - September 03, 2013
You were the one with him in the end. You were the one caring for him most. Becoming a full-time caregiver carries enormous stress. I think all caregivers "break" at some point. I know I did.Caregiving doesn't come with an instruction manual. It doesn't matter how many times you google "how to be a caregiver", no ONE site has it correct. You did the best that you could with what you had. No one on earth should ever hold that against you - least of all, yourself.
by LiquidxAngel - August 25, 2013
My father and I never openly discussed his dying and we never said goodbyes. I suppose it may have been too painful for us both at the time. Still, despite that (or because of it?), I have had several very moving dream of my father since his passing.It may be lengthy (I apologize in advance) but here is one of the dreams I had of him:----------------------------------------
The Time Capsule
In the dream, there was a "fad" that people were doing prior to dying. They were making time-capsules to give to those they loved as a personal memento. Each one would consist of five items chosen by the person who was passing...
My father made one for me and in the last moments before he died, I ran to him with the items so he could explain them to me.
I could see his labored breathing but he was neither scared, nor in pain. He was calm. Ready. No outward traces anymore, of the ugly tumor that invaded our lives...
I knelt next to him, closely, and held up the first item. It was an oddly shaped paintbrush. The bristles were squarly blocked and the handle oddly shaped so, in the hand, it had to be held a very specific way. "What does this mean, Dad?" I asked...
"This is to remind you that you can thicken or thin the trees of your Life any way that you want - it is *all* in the technique and how you handle the brush. Learn that, Kate."
The second item was a simple and small paintbrush - the kind that you would get in any children's set of watercolors. "And this one?"
"That is how I want you to remember me. I was a simple man. Neither special or unique. A simple, imperfect man." I stopped him there and said, "No, you are my father. You will always be special to me. Always."
He smiled weakly and I rummaged through the capsule. The next two items were simple sterling silver rings, both with amber stones. Not fancy but elegant in their simplicity.
"Those are YOU, Kate. What you've always been to me and to my life. I chose amber because it is a living stone. Full of warmth and able to hold both time and memory within it. You are that to me, natural, beautiful and able to carry with you, the best and worst of life. I know you will always keep me alive within you."
At this point in the dream (and while I was sleeping), I was in tears because I knew his time was approaching the end now. I hurried and grabbed the last item from the capsule: a simple strand of aurora borealis colored prayer beads."Before you go, Dad, tell me of this too... please."
His voice cracking and barely above a whisper, he said this: "That is my promise to you, Kate. There is magic after this life is done. There is so much magic afterwards and I love you."
... and with that, he closed his eyes and took his last breath.When I woke up from the dream, I was in tears. I was crying as I slept (my brother said) and I cried when I woke up. I cried for about three hours afterwards too.
Daryl: Let me first start with saying that I am so sorry you and your husband must face this awful disease.To answer your questions - I can only give you a recount of what I experienced with my father who battled with Primary CNS Lymphoma for eight months before the tumor became resistent to chemo/radiation treatment. Everyone's experience is different. Tumor location(s) factor a very large role in symptomology. "Luckily", my father's largest tumor was in an area of the brain that suppressed much of his pain. Even up to the final days, I only ever needed to administer morphine twice. His regression was very quick. Once the tumor developed resistence, he was gone in less than two months. Regression happened in stages of function loss. My father's tumor affected his balance and gait first leading him to become immobile and with little use of the left side of his body. As progression continued, he lost his continence. After that, everything went downhill at an alarming rate. Loss of appetite and thirst. Increasing moments of confusion. Lethargy and excessive sleeping (and being more difficult to rouse from sleep).Once he started refusing food/water, it was a matter of days before he slipped into a coma and passed away peacefully three days after that.Like I said though - with brain cancer/tumors, every situation is unique. For a better guide, I'd recommend for you to visit this site:
Everything is pretty much summed up here. You can also read of other caregiver accounts regarding end of life experiences.While CNS Lymphoma is not "brain cancer" per se, it mimics a LOT of GBM symptomology and found that many of the GBM personal accounts had similar traits to my father's cancer. Hope this helps and I'm so so sorry that you guys are having to go through this.
I have taken the journey to a conclusion but that does not mean the path has ended.The battle has changed but the war is always there and until lymphoma is no more, I have been called on to be a proverbial soldier in arms.(My Personal Journal)
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