Don't Understand Sometimes

This is my first message, but I have read several of your messages on the board and they have answered most of my questions. First I would like for everyone to know that both of my parents are fighting cancer. Mom with breast cancer diagnosed in August, had surgery in October. Now let me give you the history on my Father.  Daddy was diagnosed on January 9th with GBM stage 4; they removed the golf size tumor on the 14th. Took him home on the 19th ,  “WALKING”  then he was back in the hospital on the 22nd with pneumonia, sent to rehab on 31st of January “NOT WALKING” Feb 5th he developed blood clots in both legs and lungs so they put in a filter. Feb 15th he was sent to a specialty hospital because he had a bad infection in his bladder. They had in-house rehab but he was STILL NOT WALKING.  They were able to get him strong enough to sit up on the side of the bed and he would help us move him to a wheelchair.  We finally took him home on March 5th but he just seems to keep getting weaker. We had to take him back to his doctors on 12th of March and between the two doctor visits he had a seizure. At that time we thought the seizure was from the scar tissue on his brain.  This also landed him in the hospital because he had quit breathing. Some good news came from this visit. The tumor showed no sign of growing back as of yet. “He was sitting in his wheelchair at the time of the seizure.” We took him last night for a sleep study and while sitting in the wheelchair he had another seizure.  We are now thinking it is not coming from the brain surgery but the fact that he can no longer sit up straight in the chair and he can not get enough oxygen to his brain. Maybe I am just writing this because you will understand how I am feeling. Because of everything Dad has gone through we have not started any treatments at this time. We don’t think this is the best thing for him for now. The doctor is taking him off the Decatron to see if he can regain some of the strength. I have watched my Dad go from a very friendly, loving, funny personality who loved doing things outside to someone that just lies in his hospital bed sleeping all the time. Dad started all this weighing in at 248 pounds and as of two weeks ago his weight is 190. I don’t understand why he will not eat. He loved food! He will not talk about any of this with us. Does anyone have the same problem with the not eating and talking?

Concern

Daughter

Sorry to hear from your dad illness.

Could you tell where his tumor was located on?

Post surgery is not always a smooth period as some people described. It is true, a lot of patients leave the hospital walking and talking, thrilled to know that at least temporarily get rid of the monster. However it is not uncommon that bruises and swelling caused by the surgical intervention bring complications like those you described, especially seizures. Your father is certainly taking some anti-seizure medication, I am sure your doctors should revise it. Patients that never got seizures pre-surgery could have their first one just after.

About your father behavior towards food and his weakness, the main issue for caregivers is to identify those problems that are neurological issues, from those brought by the heavy burden of dealing with the illness. In your father case additionally there are several and severe complications (pneumonia, blood clots), that definitively took their tool over his general health. Anyway, it is important to discover how much of this apathy could be addressed to the cerebral damage caused by tumor and pos surgery effects. It will help you to do the right choices about how to proceed. More than one time I overlook the capacity of the brain damage to alter personality and it cost me tons of energy.

You are absolutely right to temporarily preserve your father from additional treatment for now. It is not easy to get to this decision, but it shows that you are aware of boundaries between treatment side effects and disease itself. I know you probably heard a lot about how important is to improve quality time instead of quantity, and I am aware how foolish it sounds when your father current life is miles away of your image for quality. My advice is to not compare. There are stages where we must reinvent our concept of quality, and start work with new parameters. It is definitively not easy, I am also having a hard time to make it work out, but for now it seems to be the right choice.

I share your frustration to see a fast decline in such short period of time. As I said, I am on the same boat; the difference is that my wife instead of present indifference became extremely agitated and anxious.

Best wishes for you and your family

Mazzo