Most people find their way here by typing in “brain tumor symptom timeline.” It’s posted on the left hand side and was somewhat helpful to me. After the jump, I will share my own experience. I did consult the timeline often, and though Michael’s experience was anything but typical, it did educate me to some degree. For those who have found their way here with those search terms, my heart goes out to you and feel free to write me about my experience at any time.
My experience with a brain tumor timeline:
Michael was bedridden and incontinent long before the timeline would indicate, most likely because of the size and location of his tumors (he had 3, 2 that covered almost the entire side of his brain and the other on the other side in the frontal lobe). Michael’s tumors were mostly astrocytomas with some glioblastoma cells scattered throughout.
At his diagnosis he was given 3-6 months to live. Three without treatment and 6 with treatment.
He went through the initial chemo and radiation in good spirits but after the initial round of chemotherapy, he didn’t want any more. I tried to push him for a while, and then I stopped because it wasn’t fair to him.
He lived 11 months and one day from the time of his seizure. He became incontinent and bedridden at month 4, which is when hospice came in. I pummeled the doctor with questions as to why he suddenly couldn’t walk but they simply don’t know what the tumors are pushing on. We had an MRI done at month 6 and the tumors were the same size in the beginning which was odd. They had shrunk some after treatment and the treatment did stop their growth a bit, but he was a completely different person in month 6 than in month 1 even though the MRI looked almost the same. I learned, at this time, how little they can really tell about brain tumors. If you’re losing or have lost your loved one or you’re one of the lucky ones to beat this thing, I urge you to get involved with the National Brain Tumor Society and do a fundraising walk. So much research is needed.
Another thing that happened was he had neurological symptoms…sudden high fever (very high) that would not respond to anything…then suddenly it would go down to normal. The doctors thought that the tumors were pressing on the temperature regulators and that it wasn’t a “real” fever. But how the hell do you know that? We were crazed at the time. Most people cannot survive the fevers he had and certainly would have responded to the treatments. Nothing. The high fever raged for 3 days and then suddenly it was gone.
Other times he reported (he never complained, he would just say it matter of factly when asked if something was bothering him) that he had pains in his fingertips or in his teeth or neck or back. The pain was free floating and sporadic so they put him on Neurontin for nerve pain. It seemed to alleviate the sensation of pain in odd places.
He had very good days and very bad days. He would go for days without eating and just sleeping and then suddenly wake up and be eating and talking and laughing. We had scares that it was the end during both months 7 and 8. Each time we were sure it was over and then he suddenly rebounded. It was truly a rollercoaster.
During month 9 he seemed to have an incredibly strong recovery and I went so far as to seek consultations for further treatment, although there was not much they could do at that point. He was still strong in month 10 and for the beginning of month 11. His final deterioration happened within a week of his death and it was somewhat sudden and rapid. But due to the scares prior, I was unsure. He developed the “death rattle” about 2 days prior to his death. They say death is imminent when the death rattle begins but Michael, again anything but typical, developed it about 3 days before he died.
He was last cognizant on Friday – he was pretty “with it” all day and when his caregiver went home for the weekend, he gave a little wave as he always did. When I gave him his night meds, he smiled and said, “I love you,” which he always did.
On Saturday morning I woke early, like 5 am, and he was still fast asleep. He woke about 8 am (late for him) and his eyes were glassy and he was wheezing the death rattle. It happened from Friday night to Saturday morning, a plunge – not a slide.
He never spoke another word but his eyes never left me. I stayed on the couch which I pulled over to the bed and didn’t want to leave. He wasn’t eating. I gave him some morphine to help with his breathing.
In the afternoon I called hospice. A nurse came out and examined him and said, yes, he was hours away from dying. I was almost hysterical but maintained it all for him.
I sat by his bedside and held his hand. At night I pushed the couch over to his hospital bed. I told him I loved him a million times.
The death rattle grew worse. Michael looked scared. A man who wasn’t afraid of anything.
Sunday was the same and my daughter thankfully got home in time.
On Monday morning he was much worse. The eyes were glassier, the rattle louder but he never took his eyes off me. I felt like he wanted me to do something. I’d always figured out our way out of something. I had to figure our way out of this.
Just before noon, he passed. I didn’t even realize it. He had closed his eyes for a second and I thought he would open them again, but he never did.
I just held his hand and put my head on his shoulder and sobbed and sobbed…and questioned every decision I had ever made.
Hospice had to physically guide me away from him so they could clean and dress him. I gave them jeans and a Harley shirt. That is what he would have wanted.
It’s so hard to tell, everyone’s experience is different but I hope this symptom timeline helps you somewhat.
Peace to anyone who landed here searching for an answer. I’m so sorry you need one. Take care.
I don’t know what else I can share that would be helpful to anyone going through this, but if there is something, please let me know.