Thursday, March 12, 2009

"I will follow you into the dark"

The steroids helped Dad immensely - for about 3 days. That's the cruel part of the drug, they don't want to leave him on the high dose, so we get small bits of him being 'normal' - and he gets to be reminded just how sick he really is. He's begun the tapering off, and the symptoms are already coming back. Last night, he said it felt like someone had sliced his gums. And while we know the pain is phantom, it feels very real to him. And he's frustrated that there is nothing anyone can do about it.

My Dad is dying, we are on the downhill side of this. There is no way around it, no delicate way to say it. We can hope and pray for the Tarceva to work, but my gut tells me it's not going to. Dad has never mentioned the possibility that he won't survive this, and I have always assumed that he's in denial, and we're not supposed to talk about it. Until yesterday.

I took Dad out to get ice cream, and we made a pit stop at Land of Paws so I could show him the Wheaten Terrier I'd been thinking about. He enjoyed looking at the puppies, and started talking about Scottie dogs. I recalled that he'd always had a thing for that breed - given his name and all - when we played Monopoly, he was always the Scottie playing piece, and I guess he had several Scottie-themed things as a kid. As we were leaving, he said, in an off-hand way "When I'm gone, you should get a Scottie Dog and name it Apaa." I stopped in my tracks for a minute. The wind was knocked out of me. He didn't look at me, and I responded "No, we'd call it Ed."( - My father's actual first name, like my daughter, he goes by his middle name. ) He looked at me with his eyes full of tears, and said "I'd like that."

If Heaven and Hell decide
That they both are satisfied
Illuminate the NOs on their vacancy signs

If there's no one beside you
When your soul embarks
Then I'll follow you into the dark

Saturday, March 7, 2009

"Never worked so long and hard to cement a failure"

I find it interesting that nearly every doctor we see downplays new tumor growth. I'm sure it's done for Dad's (and our) benefit, but I sometimes want to shake them and say "I don't care how 'small' it is, get it the hell out of his body!" 

The MRI results showed a new tumor in the corpus collosum, 6x8 mm. It's basically between the two hemispheres, in the region that communicates one side to the other. Dr. Massey talked gamma knife and other options, but for now, she wants to hold back and see if he responds to the Tarceva. Mom was able to secure a grant that will cover about 4 months of the drug. It's a shot in the dark, as he isn't a carrier of the protein that usually yields the best results, but it's worth a try. I talked to the doctor about his decline in thought process and balance (he fell the other day, on grass, thankfully) and she was petty adamant about him using a walker. That suggestion went over like Mother's Day at an orphanage. His pride is getting in the way of his better judgment, and we worry continually about a severe fall, breaking a major bone, or - god forbid - hitting his head. I asked Dr. Massey about the possibility of the tumor causing 'phantom' pain. He's complained for months about sinus pain (x-rays showed nothing), tooth pain (again, x-rays showed nothing), and pain around his mouth. She didn't think it was causing it, but put him on Decadron just to see, and sure enough , after two doses of steroids, he seems better. Still somewhat unsteady and brain foggy, but the other odd symptoms have lessened. I'm fairly concerned that such a small tumor is already wreaking such havoc on his central nervous system. It doesn't bode well if the Tarceva doesn't do the job. 

That is where we are at now, and I am too emotionally and physically exhausted to write any more than the bare bones of what's going on. Please send an extra prayer out for my Mom, who is recovering from a diverticulitis flare up.

"And still to come, 
The worst part and you know it, 
There is a numbness, 
In your heart and it's growing."