Dad just got dx, need some answers?

Hello all,

I posted a few days ago about my Dad's recent GBM IV dx, and the responses I've gotten were great for me and my Mom, though my Dad still seems pretty morose.  I've got so many questions, and as I'm waiting for my brain tumor books to come from Amazon I thought I'd come here.  If you could answer any, or all, it would be so helpful.  You are all amazing, strong people!

- My Dad says he's going to fight but he just sits and stares at the T.V all day, and he won't talk to us about how he's feeling or what he's thinking about.  We feel like he's shut down a little.  He's closing his business, which he's owned 10 years, because he said 'it doesn't matter anymore.'  Is this normal?  We keep telling him everyone who lives longer has a positive attitude... but then again he only found out 5 days ago.  Did your loved ones go through this period?

-How serious is every headache, dizziness?  He had a dull headache tonight, on the opposite side of where the removed tumor was and we panicked... we don't know when it means something serious or not.  He didn't have headaches before the tumor was discovered, he just randomly collapsed with a seizure.

-What does Duke do differently?  Everyone talks about Duke as if it's the only survival option, and we are definitely looking into it... we're wondering what they did differently for you guys than your local oncology departments?

Thanks in advance everyone, I really appreciate it!

 

On 10/14/2009 cubeinthesky wrote:

Hello all,

I posted a few days ago about my Dad's recent GBM IV dx, and the responses I've gotten were great for me and my Mom, though my Dad still seems pretty morose.  I've got so many questions, and as I'm waiting for my brain tumor books to come from Amazon I thought I'd come here.  If you could answer any, or all, it would be so helpful.  You are all amazing, strong people!

- My Dad says he's going to fight but he just sits and stares at the T.V all day, and he won't talk to us about how he's feeling or what he's thinking about.  We feel like he's shut down a little.  He's closing his business, which he's owned 10 years, because he said 'it doesn't matter anymore.'  Is this normal?  We keep telling him everyone who lives longer has a positive attitude... but then again he only found out 5 days ago.  Did your loved ones go through this period?

-How serious is every headache, dizziness?  He had a dull headache tonight, on the opposite side of where the removed tumor was and we panicked... we don't know when it means something serious or not.  He didn't have headaches before the tumor was discovered, he just randomly collapsed with a seizure.

-What does Duke do differently?  Everyone talks about Duke as if it's the only survival option, and we are definitely looking into it... we're wondering what they did differently for you guys than your local oncology departments?

Thanks in advance everyone, I really appreciate it!

Seems to me your Dad's response to a GBM diagnosis is pretty normal.  It's hard to wrap your head around your own mortality, especially at a relatively young  age. Fear, anger, worry about the loved ones you'll be leaving behind. It's similar to the grieving process, and it's not at all unusual to distance oneself. Eventually, if he's well, he'll get a grip on the fact that he's still alive, though living with a terminal illness, and likely revert to at least some of who he previously was. Does that make sense? On good days I feel like I'm almost the same person I was before they cut into my brain. On not-so-good days I tend to mourn my former life.

He may need some space and some time. He's processing it all. Plus, if you scroll through posts here, you'll find that many of us have difficulty with too much stimulation--kind of like an autistic child. Too many people talking at once, too many visitors, background noise, etc. after two years of this, I'm painfully aware of how easily overwhelmed I am.

As far as Duke is concerned, they are one of the premier brain tumor centers in the country, with their tratment protocol followed by other major brain tumor centers. I've never travelled south from Boston to see them, but I know I've received the same treatments they would have given me. These docs know each other, correspond, etc. etc. But it's why you have to be with a major clinic, not just local oncology.

Give your Dad some time to come around to the fact that he's still here today,  He'll realize in time that's all any of us really have.

With the uncertainty of dizziness and headaches, I suggest call the Dr.  A time will come when you feel comfortable with symptoms and out of the ordinary behavior.  Until then call the DR. every time you feel uncertain.  Nurses are there to answer your questions ; they get paid to do this.  The more they know of what is going on the better they can help your Dad.  Also, my son's oncology department insisted I call them when ever I have a question or concern because they need to know how he is doing.   Never feel like you are a bother to them.  Remember, you will be working with these people for many years.

Best of Luck,

kozyyak

Mom to Martin 5; dx 09/08; stage 4

Your father's brain could still be recovering from the effects of the seizure. Give it time. My Mom's tumor was diagnosed with a seizure. I was alone in the house with her in the middle of an ice storm when it happened. It was the scariest moment in my life. After the seizure and diagnosis Mom was really out of it. The seizure meds could be the source of the dizziness. Again, give it time. This process is a marathon and not a sprint. Try and conserve your energy and take care of yourself.

Cubeinthesky;

I have to say how lucky your Mom and Dad are to have such a caring child.  You will be such an asset to your Dad.  Patients definetly need an advocate who is willing to take time to learn and research all options.  There are several brain tumor hopsitals who are running clinical trials for the newly diagnosed.  Where are  you?  I would look through the vituraltrial.com site.  This is the most updated and current trial site and see what is available to newly diagnosed.  Then I would write them down and ask the NO what his feeling is about each one of these new ideas.  You are on the right track, reading and learning.  Your Dad does need time to sit with it all.  Hopefully he will find his feet and get on with getting on. There is also a great site on the yahoo.com  groups site -enter Brain_temador or Brain research.  There is a lot of chatter on different treatments.  It is monitored by some Drs. who will respond to questions or give out information.  Hug you Mom often, she is scared beyond words too.  All my best, prayers, hugs.

Donna, wife of Rob, dx 12/08, recurrance 7/09 inoperable

My husband went through a period where he had a very flat affect, yes. I think it is normal when there is such trauma to the brain, anesthesia, meds, etc.   

As far as Duke, I know we are getting the same treatments that my husband would get at Duke.   There isn't an infinite number of options as far as treatments go.  

All the best to your family! 

Hello 'cube', I hope you don't mind me calling you that.  I hear real fear in your message, and you obviously don't know what to expect from your dad right now.  5 days after a severe trauma, and he is stunned and still in shock over the events as they have played out?  How could he not be?  He is trying to process information that he has already received, grieving already for the loss of the life he had just a few days ago, probably trying to ward off the anger he feels, and there is everyone running around him, gathering information, feeding him the details of what he has in store for himself, reminding  him to stay positive, and then panicking when he complains of a mild headache.  He is OVERWHELMED. 

Did he ever have a mild headache before he was diagnosed with a brain tumour?  It is POSSIBLE that it is only a regular sort of headache.  How about quietly calling the clinic to enquire about whether it is ok, and stay as calm as possible about it with him?  Not every symptom means something, but if everyone panics, he will have a lot of symptoms.  He will get the message that he is VERY SICK.  Keep a calendar of details, his appointments, his blood results, his symptoms, changes in medications, all the things that the docs will ask you for, and you don't want to forget.  You will never be able to remember everything in the order that it has happened, after times passes. 

When you do your research, learn all you can, keep notes, have the info ready for when he asks, or when you need to help him to make a decision.  He will look to you for support at those times, so try to shield him from information overload now.  He can't process so much right now.  Maybe all he needs now is for his loved ones to stay close and listen to  his concerns, but if he doesn't share, just when you would like him to, then make sure you are there when he is ready.  Maybe instead of telling him to stay positive about the future, you will have to role model the behaviour by staying calm and positive yourself.  If he appears to be depressed, it is no surprise, right?  Give him some time.

My husband is 2 1/2 years out from his surgery, he still hates to be told all the information that I research.  He depends on me to be informed, but at the same time, to guard him from the negative aspects of his disease.  It is a hard role for the caregiver!  He has only one job, to beat this damn monster, but your roles are endless. 

Survival happens to lots of people who have never even heard of Duke.  If you feel better there, then thats right for you.  Lori said it clearly a few messages back.  There are lots of good treatment facilities in North America. 

So, stay calm for him, reassure him, don't overload him, do lots of laughing, listening to his favorite music, stay close but don't smother him, and be ready to help him make those decisions when the time comes.  He has decided to fight, so have the weapons handy for when he needs them, but don't ask him to gather the weapons himself right now.

Hope this helps a wee tiny bit.      Donna L 

 

I think I can talk from experience here.  Your Dad isn't discussing his feelings because he's a man (we really don't do that, I promise).  He's morose because he has brain cancer, and probably depresion-depresion explains the TV and little activity.  He probably doesn't see the point to keeping his business and getting out and doing something-has a somewhat fatalistic attitude.

I didn't go to Duke and I've outlived my prognosis-they do have some of the best neuro docs, surgeons, etc.  But for me it has been much more important to be near supporters (family & friends) than to get treatment at Duke or any other place.

Tyler dx 11/07, 2 crainiotomies, radiation, temodar, avastin

 

On 10/14/2009 cubeinthesky wrote:

Hello all,

I posted a few days ago about my Dad's recent GBM IV dx, and the responses I've gotten were great for me and my Mom, though my Dad still seems pretty morose.  I've got so many questions, and as I'm waiting for my brain tumor books to come from Amazon I thought I'd come here.  If you could answer any, or all, it would be so helpful.  You are all amazing, strong people!

- My Dad says he's going to fight but he just sits and stares at the T.V all day, and he won't talk to us about how he's feeling or what he's thinking about.  We feel like he's shut down a little.  He's closing his business, which he's owned 10 years, because he said 'it doesn't matter anymore.'  Is this normal?  We keep telling him everyone who lives longer has a positive attitude... but then again he only found out 5 days ago.  Did your loved ones go through this period?

-How serious is every headache, dizziness?  He had a dull headache tonight, on the opposite side of where the removed tumor was and we panicked... we don't know when it means something serious or not.  He didn't have headaches before the tumor was discovered, he just randomly collapsed with a seizure.

-What does Duke do differently?  Everyone talks about Duke as if it's the only survival option, and we are definitely looking into it... we're wondering what they did differently for you guys than your local oncology departments?

Thanks in advance everyone, I really appreciate it!

Please, Google Budwig Diet.  It's cottage cheese or drained yougert (my fav) mixed with flax oil.  Dr Joanna Budwig.  It is very compatable with chemo and radiation, but is strong alone.  Margaret

Re the headache and feeling morose - as well as the coming to terms with illness/life/death issues, keep in mind the side effects of any drugs/painkillers he may be taking.  My husband was prescribed tramadol recently, and after 3 days he had a constant headache, disturbed sleep at night, and became very depressed and just sat and stared vacantly at things. Stopped the drug and 2-3 days later he was himself again (though looking for other pain solutions).

 Doctors are slow(reluctant?) to recognize drug side effects . My husband was previously on a Sutent drug trial, and had 3 seizures before they finally came to the conclusion it was caused by the drug - this has left him with poor balance and vision problems 7 months after the last tablet.

Another example, some years ago, my father was prescribed tagamet which made him 'jumpy' and disrupted his sleep at night. So in their wisdom, the docs prescribed a tranquilzer, and as his behaviour and sleep got worse and worse they upped the dosage and also prescribed sleeping pills. Result: my dad couldn't sit still more than a minute, was up wandering around all the night, and he threatened to kill my mother every day, but lovingly saying he was sorry and how would she like him to do it.  He was put in to a psychiatric ward, given electric shock 'therapy', increased drug dosages until FINALLY my mother and sister took him home, took him off the drugs and he calmed down but with irreversible damage to his personality and behavious patterns.

So don't discount the side-effect of drugs!

Good luck to you and your family and all best wishes