Mom w/ GBM: Post frontal lobe craniotomy question...

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Mom w/ GBM: Post frontal lobe craniotomy question...

by Liz109 on Mon Nov 26, 2012 12:13 AM

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Hello!

I try and find my way here to read up every couple of months.  I've posted a couple of times here over the last year and a half.  Here is what was going on last year, with a link to my introduction:
http://www.cancercompass.com/message-board/message/all,60192

Long story short:

-She lives in Mississippi, I live in DC. My step dad and brothers all live withing a couple miles of her.  We are very close tho.
-Mom diagnosed with GBM 2 years ago
-Inoperable, so radiation/chemo
-She did AWESOME!  She was even so well that I bought her a plane ticket to come visit this past summer and she walked in the survivor's walk in the Race For Hope DC.  (My son and I formed a team and raised over $2100).
-So, here I find myself again needing advice. I was unable to be there for her surgery, though she was surrounded by the rest of her family. 
Doc found 2cm tumor in her right frontal lobe.  It was GBM.  They inserted Gliadel (chemo wafer) where they removed the tumor.  She did freaking amazing!  Out of the hospital in 5 days, 40 staples removed from her head 5 days after that.  She even went out with my uncle and brother the other night (she was their designated driver!!).  She is only 24 days post op.
Even tho I am the one that is furthest away, I seem to be the only one that can really wrap my head about the severity of her cancer and surgeries.  Yes, they care.  But I really don't think they understand that just because she looks good doesn't mean that it isn't serious.  And I swear, none of them seem to know how to look up basic stuff on the internet.

Anyways, here's my...well......I thought I had a question when I started this....but, now I don't know.  Here's what's going on:
The last 3 days, she has fallen down.  In public.  And hard.  The first two times was in her apartment complex while walking the dog.  She nearly rolled into the pond the first time.  The second time she was in the street and scraped up/bruised her elbow pretty bad.  Today, she was out by herself and fell down in the parking lot of a big establishment.  They carried her back to their offices even tho she insisted she was fine to drive.  Of course they wouldn't let her because of the liability.  So, she had to call her husband to come and get her, in which he drove her to her car and let her drive home.  OYE!
So, she doesn't seem to think this is a big deal.  She said she just has so much energy that her body wants to run fast and her shoes get caught on the ground (she is only 52 years old, so she's not some frail little old woman).  She said she might mention it to her doctor next week when she goes in.  I'm telling her she needs to go in tomorrow.

Am I wrong in thinking she should get this checked out ASAP?  The first thing that popped into my head were mini seizures.  Or brain swelling from the surgery.

Has anyone had this happen to them or a loved one?

What can she expect if I talk her into going into her doc first thing in the morning?

Sorry to turn this into a novel.  The only one that really understands all of this without feeling sorry for me is my husband.  He's an awesome listener, but he's not so good with input.

Thanks.

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by jon4156 on Mon Nov 26, 2012 01:44 AM

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It's impossible to give you answers to some of the questions you are asking.  My first question for you is, why in the world is your mother driving??  Less than a month post-surgery, I really think that's irresponsible and selfish of her.

If she's falling down she should definitely see her doctor asap to try to determine what the issue is.  It could be something as simple as her being unsteady on her feet and stumbling (especially if a dog is tugging on the leash), or it could be something as serious as having focal seizures and not being able to maintain her balance.  Brain swelling doesn't sound feasible since that would show up as severe headaches and you didn't mention her complaining of any.

It sounds to me like your mother is too active for her own good and could be her way of coping with the cancer by trying to overachieve to prove to herself she is ok.  The truth is that a craniotomy is a hell of an operation and nobody comes out of it without some deficiencies.

First, I think yes she should see her neuro-oncologist asap, and second, it's time you took the bull by the horns and either go to be with your mother for a while or pay to have her come stay with you so you can keep tabs on her for a while.

 

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Krissypoo1960 on Mon Nov 26, 2012 06:45 AM

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She should have been taken to the hospital after the THIRD fall. Keep in mind that she just had surgery. This is TBI (traumatic Brain Injury)...she may have swelling or possibly even an infection. TELL THE DOCTOR. With all due respect, my husband's family was from Tennessee, and they were oblivious. I kept telling them that he was doing bad and he would tell them he was fine. They of course believed him over me and when he was on his death bed I sent videos of his decline. When he died, his entire side of the family kept saying they didn't know he was that bad. Needless to say, her hubby was an IDIOT, an aboslute IDIOT to let her drive. Because of surgery, and the damage that surgery can cause the brain, she should be having mini strokes, or seizures, or any meds she might be on can cause you to fall. So, all that said, they need a wakeup call. They obviously have no idea how dangerous a GBM is. Only 1% of all the people who have GBMs have no recurrence. I am sorry this is difficult and to be so blunt, but this is NOT a disease to play with. I hope all goes well. Take care.

Kris

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Krissypoo1960 on Mon Nov 26, 2012 06:46 AM

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Correction...I did not mean to say "SHOULD" have strokes, I meant to say "could".

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Liz109 on Mon Nov 26, 2012 09:51 AM

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I absolutely agree with you all.  I am hard on her and my brothers.  My husband actually says I'm too harsh and blunt in some aspects.  I don't know what has happened with me.  I know I have gotten more direct and less emotional with my moms disease.  And he knows what I'm going thru.  His father is suffering from Alzheimers and Dementia and is in a home and not doing well.  (Long story--but he is not an emotional guy and is really blunt with his mom).  Yes, I'm still emotional, and yes, it breaks my heart.  But I fell if I'm not blunt and direct that no one will be and no one will treat this as serious as it is.  Not even my mom, but she's the last one to blame in any of this.  Last night she said she didn't want to get her license taken away.  I told her I understood, but today it was falling down in a parking lot and tomorrow it could be seizing while driving and killing a bunch of school kids crossing the street.  Did she really want that?  However, I do NOT expect her to comprehend that or fully grasp it.  She just had brain surgery and is NOT thinking straight.
I am calling her 20 min before the appointment line opens for her doc to make sure she is awake and ready to make the call.  Heck, if it comes down to it, I'll call the office myself and tattle on her to her nurses.

Moving there is simply not an option.  And I will not move her here.  I'm active duty military with a year and a half left until retirement.  The job I do does not exist at the base near my mom.  My son will be a senior in high school next year and is currently going to college full time at a university on a 100% scholarship (dual enrollment in high school).  There are many more variables that make it not an option, but that would make this post a novel.

It's really a bad situation where she's at tho.  Obviously, her disability checks aren't near what her regular paycheck was.  And her husband used to long haul truck drive, but he had to quit that and the only job he has been able to find is driving a school bus which is close to nothing in pay.  He has prostate cancer.  He has had to put off surgery because they had to choose "who's cancer is more serious".  He is a vietnam vet and will be getting disability, but it takes a long time for the VA to come thru.  Yes, he is waiting on a disability check to be able to afford surgery.  And then what happens when they're both sick?  OYE!

Sorry, that last paragraph was just rambling.  Up at 4:30 this morning because I can't stop thinking/worrying about it.

Thank you all for taking the time to respond.

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Liz109 on Mon Nov 26, 2012 09:53 AM

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Oh, and I TOTALLY agree that she should not be driving.  But her SURGEON is the one that cleared her to drive.  The day she left the hospital.  I was shocked, and I cleared it with my uncle, who was there when the doctor told her that.

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Liz109 on Mon Nov 26, 2012 09:58 AM

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it's time you took the bull by the horns and either go to be with your mother for a while or pay to have her come stay with you so you can keep tabs on her for a while.

Sorry, I misread/misunderstood when I was reading your response.  I agree, I need to go visit for awhile.  I know I am wrong for this, but it makes me mad every time I go and visit.  I have flown there to see her 4 times this past year for a week at a time.  I just can't explain it.  Well, I can, but again, this post would turn into a novel.  It kills me to see the way they live/do things.  But I do need to go back.  BADLY.  Before Christmas--which I will be trying to work out a good week when I get back to work today.

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by angel1959 on Mon Nov 26, 2012 11:53 AM

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On Nov 26, 2012 9:58 AM Liz109 wrote:

it's time you took the bull by the horns and either go to be with your mother for a while or pay to have her come stay with you so you can keep tabs on her for a while.

Sorry, I misread/misunderstood when I was reading your response.  I agree, I need to go visit for awhile.  I know I am wrong for this, but it makes me mad every time I go and visit.  I have flown there to see her 4 times this past year for a week at a time.  I just can't explain it.  Well, I can, but again, this post would turn into a novel.  It kills me to see the way they live/do things.  But I do need to go back.  BADLY.  Before Christmas--which I will be trying to work out a good week when I get back to work today.

She needs to get to the doctor ASAP my husband had brain cancer and would try to get up and do things for hisself but kept falling it was his brain he didn,t know what he was doing because the cancer took over and each time he had a seizure it took away more of his thinking and motor skills he was under hospice and at home he never got surgary because there was no hope for him he passed oct 30th with lung/ brain cancer get her to the doctor even if you have to fight with family to get her their my husbands family didn,t care that much and he did not see his brothers for 5 months and rarely saw his mom it was sad today his brothers dont call and when his mom calls she acts as if everything should be ok with me i spent 31 years with him and i had deep feeling that i will never forget so she can grieve her way and i will grieve my way

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by siblingof on Mon Nov 26, 2012 02:53 PM

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Liz, I agree with the others that your mom shouldn't be driving. There may be vision issues that she hasn't noticed. However, I don't agree with the person who called your family members idiots. I think denial is a natural coping response. And it's not always that easy to not "let" an adult drive, or do whatever else she intends to do. We should all know that.

RE: Mom w/ GBM: Post frontal lobe craniotomy question...

by Liz109 on Thu Nov 29, 2012 11:53 PM

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Thank you all so much for your replies. I just wanted to follow up. She saw her regular oncologist the day after this post. He said she just needed time to heal. Prescriber her a cane and told her not to go walking by herself. She also talked to her surgeon. He agreed with her onco. She is still cleared to drive.
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