L. Neil Smith's
THE LIBERTARIAN ENTERPRISE
Number 235, August 24, 2003
The Dominoes Fell
Update on Dan
Special to TLE
I spoke at length to Harlan this evening. She had called earlier and talked briefly to my husband & asked me to call her when I got home from work. She wanted to make sure we didn't think poorly of her for the "rules" she set out in the email I forwarded earlier today. I assured her that I, at least, understood completely. I truly believe she and Marti are doing their best to keep Dan comfortable which means as little stress as possible. She said they had gotten Scott's illustrated Probability Broach and she was reading it aloud to Dan along with the chapters Neil sent, and that it seems to "calm him" and make him happy. She also said he likes the cards we've sent, although he no longer remembers who anyone is, just knowing that people are thinking of him is a positive force. He has gone down rapidly this week, he is like a 2 year old. I will not go into physical details.
She also told me this, and this explains a lot (to me at any rate). The cancer did NOT start in his lungs. It was small cell brain cancer, that spread to his lungs and liver. Small cell cancer does not normally start in a major organ like the lungs(that is what was confusing to me about his condition.) The brain cancer had apparently begun manifesting itself with behavioral changes & mood swings & forgetfulness 4-5 months ago, but no one realized what it was. By the time it had spread to his lungs (in June) and physical symptoms began appearing, it had already destroyed much of the brain. This type of cancer mimics Alzheimers and Parkinsons. He is very like an Alzheimer's patient with the progression of symptoms. By the time he was writing about trying Essiac and Burzinski, his brain was already seriously affected, in that he possibly could not recall what he had said and to whom. When he was in Albuquerque at the convention in June, he got lost and didn't remember why he was there, also got lost going home. She also said that going to NM Aug 4 to visit his dad, who was grieving over his mom's death, took every ounce of strength he had left and probably that's why he was so much worse when he returned Aug. 12.
Harlan said that she certainly understood why we would have been suspicious and why Alan went to Houston on last Friday & assured me that she'd have done the same thing in our position. But please, if folks do still want to visit Dan, let Harlan know, don't stay long, and do not upset him, (or be upset if he doesn't know you.) He hates going to the hospital & doctors & anything to do with the thought of treatment, he is having these delusions that people are trying to poison him or take him away.
Thats about all I can remember, just that she appears to me to be a very kind, ethical person who is doing her level best to ease Dan's passage to the "next level".
Dear Mary Lou:
There IS no good time to call Dan; basically the only thing that is left of him is the body, with rare (and getting rarer) flashes of himself. Think of him as being, right now, about two years old. I meant to write you last night and let you know that your card got here, and he didn't know who you were or why you would be sending him anything, but he had a VERY bad night: I had to root him out of the closet twice. I would suggest that you call in the late morning or early afternoon; he seems to be a BIT better then. He has spent the week since Saturday being extremely agitated, and, when I took him to the doctor yesterday, spent time telling the psychiatrist that he was afraid that some men were going to come and take him away. She gave him a weeks' worth of anti-anxiety pills (something called Mirtazapine) which I have given him exactly TWICE. It turns him into a drooling vegetable, and, when it starts to wear off, makes him even MORE agitated than he is without it. I've already called the doctor about it, and he is NOT taking any more of it. The doctor is NOT happy about this, either, but she can damn well DEAL with it.
I have a VERY good juicer, as well as two food processors (Great-Grand-Daddy size and one-person size), and I have been making him fruit smoothies which he LOVES. HOWEVER, what comes out when you do meat or anything else looks EXACTLY like baby food, and he refuses to eat it. He WILL eat solids - it just takes him time, and he has to chew it a LOT before he can swallow it, but I WILL NOT subject him to the indignity of baby food while he's still sort of there. It's bad enough that he is in diapers at this point. If I have to cut his food up in REALLY small bites and feed him, that is a LOT more dignified. He has now become convinced that "those men" are going to poison him, and I have to drink from his glass and eat every other bite of food from his plate or he won't drink OR eat anything. I HATE diet drinks, and Diet Coke is about the NASTIEST thing that I have EVER been forced to drink in my LIFE. Even barium doesn't taste that awful.
He was scheduled for a CAT scan and an MRI on Wednesday, and, after they took a new set of xrays, the tech said that there was no reason or need for either one of them to be done. I looked at the xrays. They are NOT good. I also spoke to the doctor about getting him oxygen here at the house, and he came enough to himself that he refused to even talk about it. For what it's worth, I agree with him. Oxygen will only prolong the fight; it won't really do anything positive at this point other than give him extra air, and more time to be uncomfortable. I will be picking up the morphine-on-demand equipment sometime next week. The hospice people are already set up to come out twice a week, starting on Tuesday.
Something else that I would very much like for you to put up, since I don't have access to any of the Libertarian lists is a list of what to do and MUCH more importantly what NOT to do when you visit him here at the house. PLEASE understand - and try to make everyone ELSE understand -- that I am NOT trying to be ugly or exclusive. When he gets as agitated and upset as he has been this last week, he worries and fusses himself into both blackouts and seizures. The blackouts don't hurt him; the seizures DO since every one of them cuts off oxygen to his brain, and makes the deterioration that much faster. Anyhow, here are the rules:
1) If you want to come and visit Dan, call ahead and allow me at least two hours BEFORE you plan to show up. This will insure that I can get him up, if he's asleep, and keep him mostly awake and semi-aware of who is in the house besides ourselves. This is critical -- and if you just "drop by", I will NOT allow you in the house. Like all sick people who aren't functioning mentally, an unscheduled visit only agitates and upsets him for no good reason.
2) PLEASE, PLEASE, PLEASE limit your visit to NO MORE THAN ONE HOUR, and leave BEFORE the hour is up if he gets agitated or shows signs of becoming physically exhausted. He is in a VERY fragile state at this point, and there is NO reason to exhaust him.
3) PLEASE, PLEASE, PLEASE, PLEASE!!!!!!!! DO NOT DISCUSS THERAPIES OF ANY SORT WITH HIM, or offer to take him or go WITH him to the doctor/clinic/hospital with or without myself or Marti being there, or try to get him to change his mind about his prior decision NOT to seek therapy of any sort for ANY reason. He doesn't have enough mind left in most cases to know WHO you are, and trying to get him to fight for his life when he doesn't want to only upsets him to the point of hysteria and beyond.
4) PLEASE try VERY hard not to show just how upset you are at the way he looks or acts. He is nothing but skin and bones at this point, and his mind is almost completely gone, but, like most small children, he picks up on the negative emotions quicker than you can imagine -- unless you have a two year old at home.
5) If you would like, you can bring him whatever you think that he'd like to have to eat. He is especially fond of ANYTHING with chocolate in it.
6) Please DO keep sending cards; he might not know who you are, but he DOES enjoy having the cards to look at.
We are now Dan's legal guardians as well as his medical guardians. I am trying the very best that I know how to make him comfortable, and, as I said, I HATE to have to post rules of ANY sort. I am NOT trying to be ugly; I AM trying to protect Dan. You can't imagine just how fast he is going down, and right now he doesn't seem to be in any pain other than having difficulty swallowing. He is going gently into "that good night", and he is going to go to sleep one of these days and simply not wake up.
Try to remember him as he was, Mary Lou; he is no longer that person, and never will be again. These are truly dark times.