On 4/24/2008
Jilby wrote:
Hello,
My dad just went thru his 2nd surgery for GBM. He is SO depressed this time and I don't know how to snap him out of this. He seems like a completely different person.
When he was first diagnosed in July, 2007...he had surgery and did quite well. We kept the win all attitude and because the tumor was out, we just prayed that is wasn't going to come back. He had his complaints about the meds and that his speech wasn't perfect. His tumor is in the left temporal lobe close to the speech scensory. In January, his follow doctor appt. went well. The MRI was good. So, he thought he could scale back on some of the anti-seizure meds he was taking. He had weaned down off the steroid already (doctors approved that), but they never wanted to touch the seizure meds because he had two very bad seizures after the 1st surgery.
Well, in Feb 08 we learned of the regrowth of the tumor because his speech was getting worse. I immediately thought it was because of scaling back on the seizure meds. That was wrong, so they started him back on decadron. He tried the Temodar for the first time in March. You see, he opted out of that maintenance chemo and only did the radiation. He tolerated the Temodar w/no troubles at all. In April, he was having a very bad day and struggling...I was worried about a seizure again...(from scaling back on the meds)...well, we found out the tumor had grown quite a bit from Feb. Chemo did nothing. The tumor was big enough to have a 2nd surgery...which they did almost the following day. Not enough time to even think about what he was going to go through.
So that's where we are at. My dad lives alone and wants to be at his house. He lost his wife to cancer right before being diagnosed w/this tumor. He has been through so much the past 2 years...and I don't blame him for being unhappy. I know this tumor takes away the person you know...but it seems like it happened overnight. I know he won't take any more pills....so even a antidepressant probably won't be the answer.
How do you stay positive when you've been fighting this for 10 months and you don't get a break. Being that it grew back takes away alot of the positiveness from the start. Everything you read or even the doctors tell you eventually it will take over and there will be no treatments and he will die. Knowing that, how can you stay upbeat? Especially when he's feeling so down and can't talk. He's very negative w/everyone in the family. We are trying so hard to keep things normal in his life...but we also are getting worn out. I dont' know how long he can be at home alone....he won't come and stay by anyone. It's been offered many times.
You know, when we first started this journey in July I was reading these boards and thought we were pretty lucky. Dad had a good quality life...of course now that we are in re-growth stages....I'm getting the reality of how ugly this disease really is.
My dad needs something to look forward too....and so do I!
Thanks for reading!!!
Jill
Jill it was heartbreaking to read your post. You have all been through so much this last year I am sure you feel as if you are spinning out of control. You would be amazed at the help that is out there for care givers such as yourself. You have to take care of you first before you can even think of taking care of your Dad. Your Doctor at your Dad's hospital can steer you in the right direction but you do need help, ask for it, demand it
as you need to share your story with those that can help you AND help with the care of your Dad.
This is hard for me to say,here goes. Your Dad has made decisions, decisions that I am sure went against all medical advice regarding his treatment and now the consequences are evident. As you know those decisions are affecting his family as well.
The only advice for you that I can offer is stay in the moment, try not compare your ill Father with the well Father, also take solice in the fact that if you have given him happiness for a second of the day, it was better than none at all. Love him a lot, it does wonders. Try and stay positive, the tools are out there for you to use to help you.
I write from experience. I am a GBM survivor diagnosed June of 07
surgery July 07. My Doctor sucessfully removed all of my nasty bit (I will not acknowledge its name) as he said "it is not like plucking a cherry from a bowl of jello" we have something similar to the night sky in you brain where the stars are cancer cells....
we have been chasing stars since July, still going strong. Yes this is a dibilitating thing to have. As difficult as it may be try to look at the positive maybe with God's help your dad will follow.
Well wishes to your and your family Jill.
Frances Joyner