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,
I can tell you are very tired. You seem discouraged and frustrated. All of this is very normal. My sister has been fighting GBM IV since May 2005. She went through the surgery, chemo and radiation and was recovering when her husband, her caregiver, dropped dead of a heart attack in June 2007. She slipped into a deep depression and we were unsure how this was going to affect her prognosis. We had family members staying with her taking care of her and at the same time she had to move because she could no longer afford the home she shared with her husband. It's been a tough road. It IS a tough road. When you are feeling overwhelmed, the best thing for you is to get away for a while and go do something for yourself. Find someone to sit with your loved one and get away to cry or to scream or to do something to get out of the situation until you can gather your thoughts and your emotions again. Thats what we do. My other sister is this one's primary care giver now. She lives 45 minutes away from my ill sister. My ill sister is now in an apartment that assisted living arrangements. She REFUSES to live with anyone which is very frustrating for her caregivers. However, we have to understand this is how she wants it. So, we have the neighbors alerted and the office is alerted to keep an eye out when we are not around. They have the necessary phone numbers in case something were to happen. We are lucky that way. It takes several people working together as caregivers so each can have a break when needed.
Your emotions are totally normal and its OKAY to feel how you feel. The key to staying positive is to take a break when you are feeling overwhelmed. It doesn't take the sadness of what's happening away but it helps to regroup your thoughts to get back in there and deal with it some more. And, when my sister starts to get negative or she starts to cry and sob, I have to make jokes and say things to make her laugh just so I won't cry.
My thoughts and my prayers are with you. You are not alone in this.
Amy