Hi, I'm Railfence -- My Dad is Suffering from GBM

Railfence

Hello all,

I wish I've taken time to learn more of the lingo on this forum, but here goes...

My name is Railfence, a 29-yo guy. My 52-yo Dad and all of us have been going through our cancer situation since November '08. It began 11/1/08 when my Dad experienced a seizure while driving to do something for work. Fortunately, Someone was looking after him since this happened while he was stopped at a light near the local hospital with a doctor driving the car behind him. In little over a week, the doctors determined the problem was two masses (left temporal lobe and right frontal lobe, with the latter being inoperable), which they believed were not high grade although it could not be ruled out. I understand that decision since the seizure caused kidney failure which led to a forced coma, weak breathing, development of a blood clot, and rehab, keeping my Dad hospitalized for 47 days.

Because of the holidays and the believed benign nature of the masses, the next doctor appointment regarding the masses wasn't until the beginning of February. The suggested biopsy didn't happen until the beginning of March. However, some weeks before the biopsy, my Dad began experiencing auras, but no seizures. His doctor suggested increasing his anti-seizure medication (either Dilantin or Keppra). A few hours later, I noticed he became very confused. He told some neighbors that he had National Guard duty that day. He retired from the National Guard in 2004 or 2005.

March 2, the day of the biopsy, was where things begin going downhill. After the biopsy on the left temporal lobe, the neurosurgeon told us everything went well and that he "took out as much as he could". I noticed the discrepancy, but thought it was a good thing. My Mom and I talked to my Dad. He was as expected after having his skull opened up; groggy, but aware. The next day when we entered his room, we were greeted with a vacant stare. He was experiencing fluid buildup in his brain accompanied by swelling. A shunt was put in place along with steroids to reduce swelling. I think about 2-3 days after the biopsy, the neurosurgeon broke the disturbing news that he and a Johns Hopkins colleague diagnosed the smaller, left temporal lobe tumor as having 2 of the 4 characteristics of a glioblastoma.

To summarize, my Dad was released from the biopsy stay last Tuesday (6/2/09). In addition to the hydrocephalus, my Dad experienced a "series of seizures" while in intermediate care, which sent him back to intensive care. At least during the 3-month period, he went through his initial course of radiation and Temodar. He will undergo an MRI later this month or early July to determine the results. In the meantime, I have to unfortunately say my family has to deal with my Dad.

Physically, he is well. He still needs to gain his strength, but aside from the weight loss and the loss of hair, you can't look at him and tell what he's been going through.

His mental condition is another thing. He is experiencing a great deal of confusion. Consistently, he does not remember what happened minutes early. He is often in a fog where he does not recall long-term events. Three times or so since being at home, he has said that he needs to go home. I've also had to tell him twice that his Mom is dead, something that happened in 1999. And what is really difficult from a family/caretaker perspective is that he does not believe us when we try to correct him or get him to do something (like use his walker). We're hoping that therapy will improve his cognitive skills. We don't know if his confusion and behavior is a result of the tumor, the medication, the seizures, the biopsy, or any other factor.

The next big problem that we have is my Dad's day-to-day care. I'm returning to my own home in Northern Virginia by June 29th to deal with my work situation, leaving just my Mom at home with my Dad. My Mom has been on leave from work since the biopsy and has to return next week to insure she keeps her job and her insurance. Her Family Medical Leave was exhausted in November/December. There's not many options and funds here for at-home-care. Even if at-home-care was an option, my Mom would still have to be responsible for taking care of my Dad. Since it's difficult and wearing for the two of us to take care of him, my Mom doesn't feel she can handle him here by himself. I have to agree with her. I've offered to move back home, but she has declined that. Which leaves the option of nursing home, an option that Mom and I don't want because we feel that it signifies giving up on my Dad.

Geez, I wanted to keep this short, but it looks like I failed at that. Sorry for the long message/bordering on rant.

Well, anyone patient enough to make it this far, thanks.

I guess the big questions that we have now is my Dad's mental condition. I don't think I've heard or read about anyone having a similar experience. Is our experience that unique? Has anyone or their loved ones recover from this kind of condition (mental, not the cancer itself)?

Even though going through cancer is one of the worst situations for anyone, I am glad that sites like this are around to provide advice, understanding, and comfort.

Railfence

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2402

Hi Railfence!

Welcome to the forums. Sounds like a lot has been going on in your Dad's world. I hope you copy and post this into the brain cancer forum because we have a lot of good folks there who will reach out to give support and whatever information they have.

Never worry about "lingo" -- you'll catch on quicker than you really ever wanted to.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

brainman

Railfence hi and welcome to the forum. I am very sorry about your father's GBM.

It is wonderful that he has lived this long even though with what sounds like significant deficits. It is not totally unheard of for someone with a brain cancer to also have so type of impact on cognition and emotions. It really depends on the part of the brain that is affected by the tumor. I have some cognitive loss as well... hard to learn new things and remember old things in my case. My mother (who died 2 months after her GBM was diagnosed) did not show deficits in these areas. He losses were in her vision because that is where the bulk of her tumor was located.

As for writing too much, you should read some of my earlier stuff Laughing

. To be honest, I did have to read it a couple of times but that is my problem... not yours. I get tired easily... one of the reasons I am not as active here anymore. But you should feel free to write as much and as often as you need. There is actually something therapeutic about expressing in writing what is going on in your life and in the life of your father.

You and your father are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

tawny111 · Regular Joined: 04 Jun 2009 Posts: 37 Location: usa

hi, i assume you are in quite a bit of an emotional mess, my quick story is that my father had a major stroke, feb. 22, 08.....there was quite a a battle, i held out high hopes, he'd come home, yet, due to his age ....84 today, advanced parkinsons ..I THINK IT WAS REGLEN HE WAS ON FOR A BAD INTESIONAL PROB but cannot prove it...i can only say one thing, because now he just had a tumor removed, what else?
back to the issue, i proclaimed to everyone, i used to work in a personal care facility, what i saw was ignorance, negelect..i told everyone, MY PARENTS WILL NEVER GO IN "ONE OF THOSE PLACES"....the stroke nearly killed my dad, and he lived, only to be paralyzed, we could not take care of him at home, he needed a skilled facility....that broke my heart in pieces that i still am trying to pick up!
i feel this way right now, people are living longer because of high end technology, then they end up getting some other life threatening thing, just add more pills, more this, more that.
trust me, i never thought in my wildest worst dream that this all happened to my father, i'm haunted and will do the best i can for him...yet, it is simply NOT FAIR....amen.
sometimes we have to make decisions, yet, we are not up to it.
sincerely
tawny

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others