Dec 04, 2011 - 1:39 am
My husband was diagnosed with Primary CNS Lymphoma 13 years ago and we were told he would not survive more than 48 months.
He received many different kinds of chemo (I remember vincristine, methotrexate, procarbazine - and there were more) - and full brain (and eye orbit) radiation. The good news: HE'S ALIVE!!!! The bad news: we're now seeing (1) brain atrophy at a very advanced rate; (2) absence of brain matter (apparently where there were lesions, and the radiation zapped brain matter) - his remaining brain has taken up the slack; (3) white matter disease (actually, not sure this is the result of the radiation, or just another problem) - it's completely engulfing his brain, causing seizures.
He is suffering from muscle dysfunction - he is unable to walk more than a few feet without his legs just giving out; he has lost the ability to control his urinary muscles; he is losing the ability to lift things weighing more than a few pounds; he leans to one side because he no longer has the strength to keep himself upright. When he CAN walk, he shuffles, sometimes in an uncontrolled forward motion where I think the end result is a face-plant; he can no longer lift his feet more than one or two steps.
He is beginning to have memory issues, and some cognitive issues - that is, he sometimes cannot process what's being said to him. If he REALLY concentrates, and tries very hard, he can sometimes figure out what's being asked of him - but sometimes he seems totally blank when we talk to him. He just doesn't understand.
His first major seizure actually happened on a 5 hour flight, within 20 minutes of takeoff - and lasted almost the entire flight. He was mostly unconscious - with moments of lucidity - but he had no idea where we were, or why we were on a flight (his mother had died and we were flying to her burial). He couldn't say who I was (we've been married for 28 years), or what my name is. At one point we thought an ambulance would be meeting our flight, but he came out of it enough that he insisted we just go to the hotel so we could be at the cemetery for his mother the next day. It was the beginning of our decent into this land of "living with the side effects of full brain radiation."
Is anyone out there who is coping with this? I don't know if we need physical therapy - or whether we can take classes or read books on ... well ... what we're supposed to DO. How can I HELP him? What can I expect? Will he get better? Or worse?
God save us - just give us the grace to do what we need to do.