Confusing condition...

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Confusing condition...

by Karma1433 on Sun Jul 05, 2015 05:57 AM

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Maybe someone can relate or share some insight as to what I'm currently experiencing. I am 36 years old and am currently caring for my 59 year old mother who was diagnosed with GBM Grade 4 (also gliosarcoma and gliocerebri matastis) this past February 2015. Her largest tumor was locate in the frontal right lobe with a few others here and there on the right side as well. She had surgery for biopsy and removal of what they could take out from the largest one on February 19. The portion of her brain they took was part of personality, so she awoke with no emotions really, other than humor which has been a blessing for sure. She began radiation and temador about 6 weeks later. After about 4 weeks of treatment she developed pneumonia and had paralysis of the left side of her face and lost almost complete use of her left hand. After an MRI it was discovered that the radiation and temador were neither working, but the tumor appeared to have grown through the treatment. It was recommended that she stop all treatments and begin a new form through a port that was surgically implanted into her chest. She was then given 90 minute doses of Avastin (a drug that kills new blood vessels and prevents growth) as well as a 60 minute treatment of CPT-11 (a stronger more aggressive form of chemo). This was to be administered once every other week. After her 2nd treatment her condition began to decline quite rapidly. She became week again on her left side, began swelling at an incredible rate, became very dizzy, experiencing loss of bowels, and her oxygen level during our last meeting with her oncologist was at 75%. They immediately recommended hospice care and had a bed, oxygen and all kinds of drugs sent to my house. Since that time (about two months now). We've been on a great roller coaster. She will have great days where she is coherent, clearly speaking, walks by herself, knows the date etc followed by about three days of complete disorientation, shaking, slurping, sleeping and hard to awaken to the point on two occasions in the past 5 weeks I've called family in to say good byes.......and then she has another pretty good day. It is quite confusing and I'm curious if anyone else has ever experienced something similar? I keep thinking, okay, this is it and prepare emotionally to the point I am completely numb and do not think one way or another on bad days. For example, yesterday, July 3, 2015, she was sitting up, riding in the car with me, talking, and staying up most of the day. Today, she could not get out of bed on her own, was very dizzy, and was only awake for about an hour and 45 minutes. Why is this happening I wonder? I feel like the universe is messing with me and it's very sad to watch, for her. I cannot imagine the mental craze that must occur on a daily basis knowing you're going to die, but not knowing when. Anyway, I'm babbling now, but any advice or reasoning anyone might have is welcomed and greatly appreciated.

RE: Confusing condition...

by rtheresalfh on Thu Sep 17, 2015 07:02 PM

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Your description of your Mom's good days and bad days is exactly what is taking such a heart breaking toll on me regarding my Husband.  He has Gliomatosis Cerebri, it is Astrocytoma in 3 lobes and in brain stem and has caused a midline shift.  He has days where we can go to a movie (he needs a cane or walker). have Company over (he tires very easily) and take a very short walk and then days where I am mentally preparing myself for the end to be near because he sleeps for 10 hours straight (daytime) and he cannot speak above a whisper and he is too weak to put fork of food to his mouth.. and he remembers nothing and stares off in to space.  The highs are high and the lows are devastating.  I hate hate hate what this has done to a once incredible athlete.. who now depends on someone for almost everything.  How can he do so well one day only to crash and be out of it so bad that I am panicking and calling our adult kids to get to the house and be with him.

 

RE: Confusing condition...

by Dodgerblue on Fri Sep 18, 2015 01:17 PM

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My guess is that it probably has something to do with the level of swelling on the brain.  Less swelling-higher functioning, more swelling-lower functioning.  Enjoy the good days.

Dodger

RE: Confusing condition...

by rtheresalfh on Fri Sep 18, 2015 01:45 PM

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Your guess is exaclty what I have been told.  I want so badly to try and "control" these low times by figuring out what in the heck causes the swelliing to occur to the point that he goes down.  A while back I could specifically tie it to him overdoing it in his attempts to keep his physical body strong.  However, now, all he is able to do is , with assistance, get down on the floor and then he tries real hard to stretch.   I know there is no real explanation for any of this.  I really try hard to tell myself and then remind myself that there is not much I can do for him. 

 

RE: Confusing condition...

by Dodgerblue on Fri Sep 18, 2015 06:24 PM

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Your love and support is doing more than you know!  Keep your head up.

Dodger

RE: Confusing condition...

by gorskina on Sat Sep 19, 2015 11:37 PM

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I just recently lost my mom who just turned 50 to GBM, and your description of the ups and downs are just like my mothers. Months before her passing I told family to say their good byes and then she would be better up and talking and then the next week she was bed bound and back and forth. I think a lot had to do with the swelling, the brain is so sensative to even the smallest changes and it controls everything we do so any pressure can cause a new symtom big or small, I agree with the following posts that you just need to enjoy the good days and be blessed that your mother has her humor still, my mother lost her ablility speak and communicate the last 2 months and it was quite sudden and prior to that she was very angry and it was extremely difficult for our family to see. best of luck to you and your family. I hope one day soon the will find out what causes cancer and find a cure. #cancersucks

RE: Confusing condition...

by veracityW on Sun Sep 27, 2015 09:00 PM

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i'm having something similar happening to my husband. he had a major seizure on May 1, and was MRI'ed up one side & down the other, finally diagnosed with AA grade 3 in june, with two small tumors in the speech center. he did 42 days of site-specific radiation plus Temodar, and then another MRI. another tumor has developed in the frontal lobe. he is now on rounds of Temodar, 5 days on, 23 off. we are in the middle of the first 23 days off, and i have noticed some alarming symptoms: i inadvertently failed to give him his daily dose of Decadron, and he went into massive withdrawal, slept most of the next day, and finally was willing to take his pills. i won't make that mistake again!!

it seems that when the Decadron level is low, the brain swelling kicks in. i keep tinkering with the dose. but something more alarming is happening: he is having lapses in judgment. he had a fender-bender in august and not only didn't report it to AAA, but forgot about it completely. i only found out when AAA contacted me. also, when he goes to the grocery, he tends to buy all sorts of stuff we already have while forgetting what we need, and refusing to take the listhe forgot how to use his coffeemaker for a while the other day. plus, the other evening, i caught him sneaking a tot of brandy into his coffee, which is strictly verboten with his meds. so i confiscated the brandy & poured it out. i'm afraid the frontal tumor/brain swelling is affecting his mental state. i've written to his doctor and laid this out, but i am really scared. it's like having cancer and alzheimer's at the same time. his brothers are going to come to our house and do a family intervention to see if we can take the car away and keep it at his brother's house, because i think he's becoming more reckless as time goes on. the thing is, being a raised-in-california guy, driving is a HUGE part of his self image, and it's going to be very hard for him to give it up. and he gets very angry when he's unhappy, and i know i will get the brunt of it. 

we are still very affectionate and i love him dearly and hate to have him feel that i'm plotting with the family behind his back, but there is no way i can physically restrain him if he wants to use the car. i don't drive nor have a license, so it's not just a question of my taking over the driving. 

seeing him losing parts of his life and making such a valiant effort to keep things "normal" just breaks my heart. he is such a good guy.

RE: Confusing condition...

by rtheresalfh on Mon Sep 28, 2015 01:32 PM

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I am sharing our life experience with the utmost respect:  My Husand was having "minor mishaps" while driving.  He had never caused an accident in more than 40 years of driving. I started to notice what appeared to be a lack of confidence and then he would ask me which exit to take when we would be returning from Church and then that turned in to him forgetting how to get home.  I talked to him about the seriousness of driving a car with what seemed like a new impairment and he would defend him self and get hostile.  Well, he ended up causing a 3 car accident and a pedestrian was within feet of flying debris) pedestrian not hurt at all) and one driver with minor whiplash.  My Husband panicked, jumped out of his car to run to the aide of the other two drivers and almost was killed becease he ran in to traffic.  Of course, his Driver's License was revoked (His Oncologist called the BMV) and my keys were never where he could find them and now he is too weak to even get out the house on his own.   I sure wish i had put my foot down and will not forgive myself for not doing so.   We did not know it at the time, but my Husband was having very tiny seizures and he was driving while having them.   

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