2008 A Letter dated 8/8/01

Tuesday, September 16, 2008

This is the second letter I found in Jay's father's files. In August of 2001, Jay was three years into the brain cancer battle. His father called twice a week to talk with Jay. He wasn't a stupid man, but he couldn't seem to understand that Jay had no short-term memory, was blind and hemi-paralyzed, completely bedridden, pretty much incapable of logical or coherent thought, suffering frequent bouts of confusion, delusion, and hallucination, and that Jay was unaware that we had ceased active treatment.

Jay's father seemed in complete and total denial.

He kept urging that Jay concentrate on his physical therapy, get stronger, do crossword puzzles to keep his mind sharp, and so on. He tried to discuss scientific ideas and theories. I know he was trying to be encouraging, but what he encouraged was impossible, and Jay was always very upset and confused after phone conversations with his father.

This was my attempt to set him straight. I was tough and blunt.

Again, "[ ]" is today's edits.

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August 8, 2001

Dear Dad,

I'm never quite sure how much Jay hears or understands, so I'm more comfortable writing than calling. [I couldn't leave Jay alone for more than three or four minutes, or he panicked because he didn't know where I was, and he was sleeping only minutes at a time, so a call would have had to have been made from our bedroom.] I need to tell you what Jay's status is right now.

He has had three craniotomies, 35 sessions of fractionated radiotherapy, one steriotactic radiosurgery, 5 or 6 different chemotherapies, and immunotherapy. He's had everything medical science has to offer for his type of tumor. We knew from the start that malignant brain tumors are so far incurable, but there's a lot of research going on, so we figured we'd just try to keep him going as long as possible and maybe we'd be there for the great breakthrough.

He is now on his fifth recurrence. Most people don't make it past the second. A few make it to the third. Almost no one makes it to the fourth. So Jay has been very exceptional. It's been a heroic effort, and throughout it all, he has never whined or complained. We've made it this far only because he has been very good at following orders, and I've been vigilant and very aggressive. Throughout it all, we have maintained a positive attitude (Jay more so than I, because I tend to be more realistic).

But it's easy to tip over from positive to denial. I will let Jay be in denial right now, but I have to be realistic.

The immunotherapy worked very well. The researchers are happy with the results Jay has shown, because he proved that they can get the white cells to attack his type of tumor. However, in Jay's particular case, the tumor was just plain too fast. For every cell that was killed, another divided. When I talked with Dr. H[---], she said that continuing with the immunotherapy would probably be no longer effective, plus he is too weak to withstand more anyway. She recommended another debulking surgery and another radiosurgery. I sent the MRIs to Albany for another opinion, and Dr. W[---] and Dr. P[---] agree with me, that another surgery would not do any good - in fact would probably hurt more than help.

Look at your closed fist. That's what the tumor looked like for the first two surgeries. Now close the fist and stick out the thumb. That was the third surgery. He lost a lot of cognitive function in that surgery (numbers, dates, spatial relationships, ability to read a map, control of his left side, awareness of the left side of the world, etc.) Now open your fist and spread the fingers out wide. That's what the tumor looks like now. The material between the fingers may or may not be functioning.

Dr. W[---] says that the tumor now involves up to 3/4 of the right hemisphere and she doesn't know of any surgeon who would be willing to remove that much for so little potential benefit. If he survived the surgery, there would probably be very little "Jay" left. (The problems are not just on the right. There is so much pressure that the midline of the brain is deviated, causing pressure on the left hemisphere, and the brain sinuses are blocked so that fluid tends to build up on the left as well as on the right side of the brain.)

Dr. W[---] also agreed with me that the area involved is much too large for radiosurgery to be effective.

Jay's neurological status is so deteriorated at this point that he is no longer eligible for clinical trials (except the phase 1 dose-escalation trials where they keep giving more and more until they find the point where the patient is poisoned - they like terminal patients for those).

So, there is nothing more we can do.

When you call, don't ask Jay about treatments. I haven't told him that there's nothing more. He doesn't notice the passage of time, doesn't notice we're not doing anything, and I'd prefer to keep him that way. There's no point in upsetting him.

We had been doing the physical therapy exercises, but he was deteriorating so fast that there didn't seem to be any point any longer. It was becoming increasingly hard on my back and increasingly more painful and frustrating for him, and so we often ended up yelling at each other. One has to consider WHY we do these things, is the benefit worth the price, and given his prognosis the answer is an emphatic NO! So please don't ask about physical therapy, either. He isn't going to get any stronger, isn't going to sit up let alone walk again, so let's not remind him.

He does listen to the TV and his talking books, but I'm not sure how much or what sort of information he gets from them. In the "Magic Mirror" book, there was a newspaper man who was described as sloppy and hulking and constantly smelling of whiskey and tobacco [ Dad was skinny, never smoked and did not drink whiskey]. But because the story took place in Paris, in environs familiar to you, Jay decided that the character was you - and wondered how the author had got to know you. He wondered why you had never mentioned this murder in the museum that you had been involved in. Just this morning, he heard a voice on the telephone on TV, and decided it was you. Not that it sounded like you, that it was you. He wondered why you were calling a psychic reader.

So I'm not sure how much he absorbs. He listens to the news, but none of it matters to him. I get lonely sometimes because there are things I want to get indignant about or marvel at, and it's no use saying anything to him about it. He mostly doesn't understand.

I also get frustrated because every time I buy him something, within a week he is no longer able to use it - from the lighted magnifier just before his sight winked out, to the pedal-pusher he can't coordinate, the $400 gel cushion for the wheelchair which he used only twice, and the electric-ramp van he was able to ride in only a month. It feels like my buying him stuff causes him to deteriorate to where it becomes useless.

Right now he is a rag doll. He can't roll over in bed. I lift him over. [Daughter] marvels at the muscle development in my forearms. He can't hold his head up straight - it's turned to the right and tilted right. To feed him or give him something to drink, I have to support his head with my shoulder. He can't take pills any more, I crush the dexamethasone and mix it into jello or pudding, and we finally got liquid Dilantin.

He has a severe case of thrush (oral candida albicans). We got some medicine for it, but it makes him throw up (projectile), and that's too dangerous because he inhales the vomit. So I've been treating it by painting his mouth with gentian violet - but now he can't hold his mouth open or his tongue still enough for that, so I don't know what to do. We could try swishing with 1-3 part hydrogen peroxide, but he can't "swish and spit" - more than half the time he swallows it. How dangerous is that? I don't know, but I suspect it's no good. But - that's the least of the problems.

Well, that's all the facts. I need to get this into the mail. (Since I can't leave Jay alone, mail comes in and goes out with the nurse who comes once a week for his Dilantin levels.)

The main purpose of this was to fill you in, and to ask you not to draw Jay's attention to what's not happening. To level-set you.

When you call, probably the best things to talk about with him are good times from the past - like "Remember the time we went to...", "Remember when we built the...", "Remember So-and-so? Well, now he's...". His long-term memory is still in pretty good shape, and it might lift his spirits a little. (Short-term memory and logic, any thinking that requires work, is out the window---)

Nurse is here.

Yours,
[Silk]

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The letter had no effect. His father continued to upset Jay.
.