3284 Maelstrom

Wednesday, June 15, 2011

There is negative perfectionism and positive perfectionism.
Negative perfectionism is based on a fear of inadequacy.
Positive perfectionism strives for mastery.
-- Silk --

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In the past few days I have experience a maelstrom of emotions, ranging from anger, sadness, discouragement, fear, and disillusionment to joy, happiness, hope, and excitement, and everything in between, sometimes in quick succession and sometimes all at the same time.

Early Monday afternoon I met with the urologist. I had looked up the ESWL procedure scheduled for this Friday, and I had a bunch of questions and concerns, and when the office help said I wouldn't see him before the actual procedure, I had asked for an appointment to talk with him.

When I was shown into his office on Monday and took the seat in front of his desk, before I had a chance to speak he looked at me angrily and said, "You went to the internet! You can't believe anything you read on the internet! It just causes trouble!" or something like that, it may not have been his exact words, but that was the gist of it, and he was VERY angry.

I responded something to the effect that I went to the internet for questions, and have now come to him for the answers. Doesn't matter, I guess. It's obvious he doesn't like questions either. He's Egyptian, I think, has a heavy accent, and I got the distinct impression he doesn't like challenges to his authority. He asked what kind of questions.

So, I sorta blinked twice, and said, "Well, the most important one I guess, is that I have fragile capillaries. Could that be a problem?" His face turned purple, and he said, "Yes. I will not do the procedure. Do you have any other questions?" Well, that response pretty much eliminated the rest. I asked if it was possible that the fragility was only maybe in my skin, not the internal organs, and asked if there was any kind of test, and he said no, no, no, and reiterated that he would not do the procedure. Period. End of discussion.

I asked what next, then? He said we'd take the stent out and then "play it by ear". Those were his exact words. I was dismissed.

I was stunned. On the way out, I stopped at the desk to get the appointment for the stent removal, and was told that the first opening was June 30th.

I pretty much crashed then. June 30th is two and a half weeks away! This useless stent HURTS! It's hurting more every day. And there's no reason for its existence, let alone to be tearing up my insides!

I wanted to cry. I wanted to kill somebody. After all this, there's been no headway. There's been nothing but deterioration since April 2, when they removed a stone blocking the distal end of a ureter, and put the stent in the wrong place.

Driving home, I wanted to cry, but I was too angry to cry.

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You know, I got the distinct impression that it was not so much that I had questions at all, but that I said the words "fragile capillaries". One of the questions always asked is whether you have a bleeding problem or if you are taking a blood thinner. I always answer that I don't have a bleeding problem, I clot well and quickly and I heal quickly (in fact I have phenomenal healing ability), BUT that I do have fragile capillaries. I ALWAYS state that. And if it's not an interview, if it's the checkmark list, I always check "no" on bleeding problems, but then write in "I have fragile capillaries". So it was in my folder right there on his desk. It shouldn't have been a surprise.

(In fact, I suspect it's related to the blowout problem with my veins when anyone attempts to draw blood or set an IV. I just have thin walls, I guess.)

Now , here's the part that angered me more than anything else, more than his attitude, more than having to endure unnecessary pain for another two weeks, more than having no other avenue to resolve this -
I had the distinct impression that if I had not specifically asked, if I had not mentioned it to the nurse and she wrote it down as a concern when I made the appointment and if it had not been overheard by his office staff, no one would ever have asked, he would have gone ahead and done the procedure, and it's entirely possible that I could have started bleeding in and around the kidney, which is a life-threatening emergency. If I lived, I could have lost that kidney. If I had never mentioned it to him, he would have gone ahead and taken that chance!

By my actually bringing it up, he's now open to malpractice if anything went wrong.

And THAT's what made him angry!

That's not a conclusion I came to later. I had that impression right there in his office. Instantly.

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So, I have a double kidney with stones in the lower collection chamber, one of which is blocking the lower ureter, no stones in the upper collection chamber, but a stent in that upper chamber that is tearing up my bladder and doing absolutely nothing else since it's in the wrong chamber, and possibly tearing up the kidney, too, who knows, and I've had only one day in the past month or so that I haven't bled. My stomach is sticking out like I'm seven months pregnant, and it's incredibly tender, there's a nyt-load of edema going on, and since there's all that edema, but the doctor's scale says I've lot four pounds in the last month, I've probably lost a lot more than four.

There's a lump just in front of the urethral opening "down there" which I suspect is the stent poking the bottom of the bladder. It hurts. It hurts when I sit. It hurts when I walk. Imagine a fork shoved up in there, and then the tines are bent every which way, and the handle is hanging out. Now sit, and walk, and bend over. That's what it feels like. It HURTS!

I tell the doctor it hurts. I tell the nurses it hurts. Everybody just shrugs. I don't think they believe me. I tell them I'm bleeding constantly, and we're not talking pink lemonade, we're talking BLOOD! But nobody asks for a urine sample. I think they think I'm exaggerating.

In the meantime, I haven't been able to do anything physical, I haven't been to the old house in months and if I don't get out of there soon I will lose the buyer who's interested, my back and stomach are losing tone, which is dangerous because I need those muscles to keep my spine aligned, and nobody seems to care. Like two and a half more weeks don't matter. And I still have half a double kidney full of stones and blocked. That can't be good....?

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So, that was my status on Monday afternoon.

Late Monday afternoon, I got a call from the urologist's office. They had a cancellation Tuesday morning. Could I come in then to get the stent out?

Uh, yeah.

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So, Tuesday morning. Yesterday. Stent removal. Office procedure.

On Monday, during the unpleasant office conversation, I had pointed out that we still didn't know how the ureters from the left kidney were arranged - whether both ureters emptied into the bladder, or whether they joined into one before reaching the bladder, and that it was important to know that because if they joined, the stent itself could be blocking the lower ureter. I asked if it was possible to actually LOOK into the bladder with a scope, and then we'd know if there was one or two.

Apparently he hadn't thought of that. And you know sumthin'? I think that had a lot to do with the "cancellation". I think I piqued his curiosity.

When I arrived the nurse asked for a urine sample. (The first one in this office.) I filled the little cup with blood. The nurse's eyebrows shot up, but she didn't say anything.

The procedure involved a topical anesthetic swabbed around the urethra, and then a scope was inserted. With men, they use a flexible scope, but with women they use a rigid one (according to the internet - HE didn't say a single word to ME!). There's also a lot of saline pumped in to clear it out and expand things smoothly. The nurse stood next to me and told me what was going on.

The urologist cranked that damn scope all around like he was digging a hole. Then he grabbed the end of the stent and pulled it out. That surprised me. The stent has curls at either end that are supposed to keep it in place, one end in the kidney and one end in the bladder. When it's put in, a guide wire is used to keep the curls straightened out. I had assumed a guide wire would be used to straighten out the kidney end for withdrawal, but if there was any wire used yesterday, I wasn't aware of it. There were a few slight pinches, and a short feeling of heavy pressure, and then it was done.

I think the nurse asked him if he saw a second ureter on the left, and he muttered something about too much edema, so I guess that didn't pan out. I wonder if he'll ever say anything to me about it.

I put my panties back on, and the nurse told me that there would be blood for a few days, that's normal, and some pain and stinging on urination. They gave me a prescription for an antibiotic (Cipro) and a pain killer (Phenazopyridine). Six weeks from now, we need a 24-hour urine collection to find out my urine's chemical composition, and then we'll "play it by ear".

As I was walking across the parking lot, I suddenly realized I was walking without pain. The pain had crept up so slowly, and increased so subtly over the past two months that I hadn't realized how really bad it was until it was gone. Also gone was the pain I'd had in the right lower back, that I'd ascribed to my spine, because it was lessened by changing position. (Now I'm wondering if the stent had been pressing against my spine and had thrown it out of alignment.)

I threw my arms up in the air and shouted, "I'm walking! I can WALK!" I startled a few people.

Since then, I haven't seen a single drop of blood, not from the instant the stent was pulled and I was allowed to empty the saline load. It's a clear pale yellow, like evening sunshine. There was a little stinging when I piddled yesterday, but that's gone. I haven't even opened the pain pills' bottle. (And after reading the info sheet on it, I don't think I'd have ever taken it even if I did have pain. That crap can do some really nasty stuff!)

Of course, I wonder. Is all this pretty urine coming from the right kidney, and the left isn't working? Was all that blood coming not from the bladder, but from the left kidney, and now without the stent it's just building up in the kidney and not coming out? Is there any way I can know?

But I can walk without pain. I can sit without pain. For now, I'm happy.

Later, I'll think about the stones, and the blockage, still there. But not now.
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1036 The Hellhole - Clove Lakes, Staten Island

Monday, December 25, 2006

[Update, 11/13/09. I've decided to tell the name of the hellhole, Clove Lakes Health Care and Rehabilitation Center, in Staten Island, NY, and the names of the a**hole doctors, Fealey and Nadler, because this is all true, and it's a disservice to the world to protect them. We can only hope that the place has improved in the past 8 years, but I seriously doubt it.]

Again, as with the previous entry, I'm putting all this here, in my personal journal, to preserve it from hard disk destruction and floppy deterioration. Don't bother reading it unless you have lots of time and an overwhelming interest in medical sadism.

When it was time for the next cycle of immunotherapy, we moved Jay to a skilled-nursing home in Staten Island, close to the Nalitt Cancer Center. (They described themselves not as a nursing home, however, but as a physical rehabilitation facility.) Because they were out of network, our insurance would pay for his stay there only if he was getting physical therapy (PT). He could also have been admitted to the Staten Island University Hospital, but I had promised Jay he would never have to go there again.

Something I learned later - Medicare and other medical insurers won't pay for ordinary nursing home care except for a short recovery period after a specific incident. Otherwise, only long term care plans will pay. To get around this (and get the money) many nursing homes call themselves rehab centers. They can then take in nursing home candidates, and by offering a piss-poor physical and occupational therapy program to the residents, they can charge a heck of a lot more, and be sure of getting it. Beware of these places. They are cynical, just out for the money. Also beware of places that, as part of the intake process, ask you to sign a DNR form.

The following is our experiences during the first of two months at the Hellhole, from a notebook I kept at the time. I made the 5 hour round trip five or six days a week, arriving to be with Jay about 9 am, and leaving about 9 pm. The other one or two days a week were insurance battles, lining up ambulette transportation to and from the cancer center for Jay's treatments, taking care of the animals, paying bills, doing laundry (the nursing home did not do the residents' laundry) and so on.

I shall not use the name of the place for legal reasons (but the first word is a spice that usually goes well with cinnamon, and the second is a large body of water), and the foul doctor's names have a letter replaced to foil searches. But if anyone comes after me for this, it is all absolutely the truth as I experienced it, and I stand by it. Of course, this was all in 2001, six years ago. One hopes they have improved since then. [Insert cynical snort.]

The worst was the medications. In addition to the screwups documented here, medications were always dispensed late, and at much longer intervals than prescribed. Every three hours or so a nurse - ONE nurse - would set out with the meds cart, to cover the entire floor. Jay was supposed to get certain meds every four hours, but they would arrive three hours late, so they'd just shrug and skip the next dose. This is unforgiveably sloppy when the purpose is to control, for example, intracranial edema.

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• 03/19/01 Monday - Arrival at the Hellhole, apx. 3 PM. List of medications and prescriptions had been sent ahead, including
  
  1. Hydrocodone/APAP 10/500 1 to 1 1/2 every four hours or 2 every 6 hours (prescribed by the neurologist),
  2. Fragmin 5000u 1 every day,
  3. Dilantin 300mg twice a day,
  4. Topamax 25mg at bedtime,
  5. Dexamethasone 4 mg (Decadron) every 8 hours.
  They had no meds when we arrived, so we used what I had brought with us. Jay: nausea, headache, left arm clenched to chest (mild focal seizure), cannot bridge or roll over.


• 03/20 Tuesday - I discover that the nurse’s meds list does not include the Hydrocodone, and the Fragmin had been D/C’d (discontinued). Jay had just come off Tamoxifen, which is famous for causing DVT, he needed that Fragmin! Also they don’t plan to use the Teds (pressure stockings). They plan to treat the headache with Tylenol. I explain that the headache is due to a TUMOR!, that he’s had a constant blinding (literally) headache since mid-December, and Tylenol alone just doesn’t do it. The immunotherapy actually creates an infection in his brain. Swelling and pain is expected. There will be pressure on the eyes, ears, brainstem, etc., and increased blood flow. The Hydrocodone will dull the pain, and if you then give 2-3 Tylenol when the hydrocodone starts to wear off in about 4 hours, you can sometimes hold it for another 4 hours. Jay: bad headache, nausea, visual disturbances including vertical double vision and “gray patches”. Evaluated for PT/OT.


• 03/21/01 Wednesday - To Nalitt Institute for white cell collection. He is there from 8 AM until about 3 PM. No meds have been sent with him. Dr. Pannullo suggests an eye patch for the double vision - may help with the nausea and will certainly help him to see better. Jay: headache, dizziness, nausea. Collection doctor finds so much clotting he can’t use the right groin, left side also has clots but he is able to push through them. (And the Hellhole doctor D/C'd the Fragmin!) Back at CL, I insist on Teds (we had brought three pair), and ask nurse to inform Dr. Feal3y about eye patch to help Jay see. Lortab has been prescribed by Dr. Feal3y for headache, instead of Hydrocodone. My pointing out that Lortab contains a lot of acetaminophen, and Jay's been getting too much acetaminophen for someone who's been on heavy chemotherapy for two years, seems to have no effect.
  


• 03/24 Saturday - Jay: Vomiting and severe headache behind right eye since Wednesday. We can’t seem to get Lortab often enough or soon enough to control it.


• Note - sometime along about here I discover that he is not getting the Decadron consistently. They “D/C” orders by crossing it out with yellow highlighter. It seems the yellow had bled through from D/Cing something on the other side of the page, and depending on who was dispensing the meds, they thought this order had been D/C’d. I point out the problem. (When we left, they were still using the highlighter, and it was still bleeding through.) It's no wonder the edema is increasing.
  


• 03/26 Monday - I discover that Lortab is dispensed 1 tablet every 6 hours! This is 1/2 to 2/3 the dose he needs, especially given that it lasts on average only 3 1/2 hours. By the time he gets a pill, the headache is too bad for the pill to do much. Also, it’s on request only! When it’s REALLY bad, it doesn’t occur to a lethargic suffering Jay to ask, especially at night. Especially when bedside bell is NEVER answered at night. Especially when they keep putting the bell button on the left, and I keep explaining to the that he can't find it on the left. "Left" does not exist. I ask nurse to ask Dr. Feal3y to increase dose to at least the level prescribed by the neurologist for the hydrocodone. To Nalitt for first infusion of cycle.


• 03/27 Tuesday - Jay: Mental confusion, pain in neck, headache. Meds have NOT been corrected. They “don’t want to overmedicate him.” Dr. Feal3y obviously has no concept of what's going on, and is ignoring the edema. Dr. Panullo has given up on Dr. Feal3y returning calls, and has faxed him a letter. From external appearances, with the weak exception of the eye patch, the letter was also ignored.


• 03/28 Wednesday - Eye patch ordered pending exam by “eye guy” Dr. All3n, who comes to CL once a week. To Nalitt for second infusion. Jay: headache, having some trouble holding head up, but otherwise ok. I discuss headache situation with Dr. Panullo, she says meds must be given every 4 hours to prevent the headache. I ask CL nurse to ask Dr. Feal3y to adjust the meds, based on Jay’s neurosurgeon(Panullo)’s recommendation, that he should call Dr. Panullo if there are any questions.


• 03/30 Friday - Still on Lortab 6 hour PID for headaches. To Nalitt for third infusion. Jay: headaches, badly slumped over in chair, back of head parallel to floor, vomiting, vision is worse, he’s almost blind. Jay’s appearance worries Dr. Hayes, so she reduces dose of IL-2. It was the third infusion that wiped him out last time, and so I am worried that with the weekend coming, the nurses won’t know what to do if he crashes. Dr. Panullo writes three scripts to take to Dr. Feal3y---1. Oxy-IR every four hours for headache (she’s also worried that he’s been taking heavy doses of acetaminophen since Jan, Oxy-IR is oxycodone without acetaminophen), 2. if excessive nausea, lethargy, vomiting, or headache, give a “booster” of 8 mg Decadron, and 3. if excessive etc. increase Decadron to 4 mg every 6 hours. I give them to the nurses and they put them in the book, and I discuss the potential problem and logic with Dr. Szel3s, who is on duty at the Hellhole that afternoon/evening. The nurses ask “what’s excessive?” so I write a page defining "excessive" lethargy, vomiting, etc. which also goes into the book. That evening, I find Jay is still on Lortab every 6 hours, and the Decadron has already been increased, AND they have the booster of Decadron “every day for three days”. I freak, and call Dr. Panullo at home. Several phone calls later between Dr. Szel3s and Dr. Panullo, she and I think it’s all fixed. In the meantime, Jay got nothing for the headache from noon to 7:30 PM. Meg and Nelly came to room apx. 3 PM for PT/OT, they said that he was doing very well at PT/OT and improving. This is amazing - asking him to do PT would be like asking a migraine suffer to dance. The floor nurses have also commented that he is trying to use his left arm a lot more, too. I had noticed he bridges better, and doesn’t dangle the left arm.


• 04/01 Sunday - Still on Lortab every six hours. The Oxy-IR “has not yet arrived from the pharmacy.” Jay: Very bad headaches. Has been throwing up meals for two days (but not excessive - excessive would be several times in a few hours, or just stomach acid, or dry heaves). Very lethargic, but still interested in my reading to him from Scientific American, good commentary from him.


• 04/02 Monday - To Nalitt for fourth infusion. Jay: bad headache, double vision. Dr. Pannullo faxed a request for Oxy-IR to Dr. Feal3y. When we got back to CL, I looked at Meds orders. The order written the previous Friday said “Lortab every six hours PID for 7 days, then reevaluate”. Reevaluate what!?!?!? I freaked again. A nurse told me that Dr. Feal3y didn’t want to go to the Oxy-IR, and didn’t want to go to four hours, because he didn’t want to dope Jay to the point where he couldn’t participate in PT. (Actually, it a wonder he has been able to so far with the screaming headaches he’s had.) Later, at 5 PM, we asked for headache medicine, and got only Tylenol. The nurse told me that the Lortab had been D/C’d, and the Oxy-IR had not yet arrived (they use a pharmacy in Long Island). I said something to the effect of “don’t you think that’s rather stupid?” She called a doctor and got the Lortab back on until the arrival of the Oxy-IR.


• 04/03 Tuesday - Oxy-IR has arrived, to be given every four hours while awake. Jay somewhat confused on phone in AM, but has no pain. In PM, he says someone offered him a Lortab and he refused it. I called nurse, and she said of course not, Lortab is D/C’d now that Oxy-IR is here.


• 04/04 Wednesday - A nurse (Maria?) asked me if Jay should still be getting the Lortab. It had not been D/C’d! They're giving him both Lortab and Oxy-IR! Jay says he refused Lortab again this morning. This may explain his mental confusion yesterday morning. They could have put him into a coma! To Nalitt for fifth infusion. Jay: feels much better, is sitting up well, still some headache but better controlled, still vertical double vision. Dr. Pannullo again suggests eye patch.


• 04/06 Friday - To Nalitt for sixth infusion, last of this cycle. Jay: feeling and looking great. Meg was enthusiastic about his performance in PT, says he did 20 left leg lifts, and was asking “What’s next?” after each exercise. She said he did very well. The Oxy-IR is helping, as we'd predicted.
  


• 04/07 Saturday - Jay: sounded good on the phone.


• 04/08 Sunday - Jay: pain in right ear, lethargic, couldn’t cooperate with PT. (Hindsight - I should have recognized ear pain as first sign of increasing edema pressure in brain.) Reported ear pain to nurse. Must be bad if it breaks through Oxy-IR. Threw up in evening.


• 04/09 Monday - Dr. Feal3y saw him as usual in AM, but didn’t have an otoscope - said he’d return with one, never did. Jay: pain in ear, mental confusion, lethargic but still responsive, very nauseated.


• 04/10 Tuesday - Saw Dr. Feal3y (for the first time! He'd never before been in the building when I was there) in lobby on way in, told him I was worried that the edema was increasing, “I haven’t seen him yet today”, but Jay has been getting steadily worse since Saturday, it looked very much like pressure to me, it may be time to increase the Decadron. He said no, “we don’t want to overmedicate”. (Doesn’t he see the symptoms? Doesn't he understand the edema?) However, he would order the eye patch, “might help with the nausea”. (Like nausea is the big problem? Like it’s ok that he has been virtually blind, that he can’t tell what his left arm or leg are doing unless he can see them, and he can’t see them with the visual confusion, but people keep asking him to move them in certain ways, but that’s ok? That wasn’t enough reason already?) When I get upstairs, I discover that the eye patch has been ordered since 3/28, but that Dr. All3n still hasn’t seen Jay yet to approve it. (Dr. All3n had been in on 4/7, but did not stop to see Jay.) Jay: almost falling out of the wheelchair, the Ommaya is too hard (definite sign of high intracranial pressure), he is almost unresponsive, vomiting AM and PM. He gets worse as the day goes on, and when I leave, I tell the nurses to have Dr. Feal3y call me from Jay’s room in the morning. I want to point out the symptoms while the example is there in front of him. Frankly, I wonder if he isn’t annoyed at me for insisting on the Oxy-IR, and has decided that Jay is merely “doped up”. I get home at 11:30 PM, and find a telephone message from the nursing supervisor They are very worried about Jay, he is unresponsive, they have consulted the dr on call, and have already given him the decadron booster (only 4 mg, not the 8 mg Dr. Pannullo wanted), have increased the decadron, and if he doesn’t improve during the night, they will send him to the hospital.


• 04/11 Wednesday - Dr. Feal3y doesn’t call from Jay’s room. He calls about noonish, (I am in Jay's room then) after I asked the nurse to remind him. He says Jay has responded to the decadron and is looking better, and has his eye patch. I am very proud that I don’t scream at him. Jay: lethargic, but not like Tuesday, some nausea, but no throwing up, headache.


• 04/12 Thursday - Jay: threw up breakfast and lunch, lethargy, overemotional, mentally more alert, projectile vomit in PM. His 11 AM Dilantin arrived at 1:30 PM today, I’ve noticed that for the past week, that timing of meds seems to be very loose. Also, I worry about his vomiting up meds, they don't do any good if they don't stay down. I also noticed that they give him the decadron on an empty stomach. That alone will cause nausea. (Jay gets excess acid.) Have asked nurses to give cookie or milk with decadron. (They say ok, write it down, but never do it.)


• 04/13 Friday - Jay: nausea in AM, but no throwing up.


• 04/14 Saturday - Jay: holding head up again, looking better, a little nausea, but no throwing up, active and interested, says eyes are working a little better. Effects of the infusions are apparently wearing off, edema decreasing.


• 04/16 Monday - Meeting this morning , supposed to be to discuss “his care”. Attendees were from dietary, recreation, social services, and the nurse supervisor Carrie. Dr. Feal3y was not there, nor was anyone there from PT/OT, until they called in Nelly (OT) at my request. I was shocked to learn that PT had been D/C’d as of the previous Wednesday, 04/11. I was very angry that I had not been informed. I was told that “the team” felt that he had not been participating, and was not progressing. I maintained that if they went back to 04/06 and before, the opinion was different, and that any more recent non-participation was due to inadequate medication. I requested a reevaluation now that he has the proper headache dosing and the edema is under control. The Dietary guy was pleased that Jay, at 222 lbs, had gained 20 lbs. I didn’t mention to him that when the aides had weighed him and got 202, the arm of the scale was resting partly on the bed. He had weighed 240 when I brought him in. Jay: very good today, sitting up straight, eating well, no nausea. I sat in on a bit of his OT, not much to see. Asked if I could attend all future OT sessions, Nelly said OK. The 11 AM Dilantin arrived at 1:45 PM today. This is getting really sloppy!


• 04/17 Tuesday - Caught Dr. Nadl3r (OT/PT) in the hall on the way in and asked him to reevaluate Jay. He was very negative, obviously didn’t want to talk to me, didn’t feel there was any point, that Jay had been making no progress and his participation was very ragged. I said that’s not what his therapists had been saying a week back, that the recent deterioration was a side effect of his immunotherapy. I even asked (begged) if it wasn’t sufficient to go on to keep him from physically deteriorating, prevent atrophy (not my real point - I think Jay will do much better now that there will be a three week break in immunotherapy and win them over), but he responded (and I was shocked!) that “keeping him from deteriorating is not medically indicated.” What does that mean? Jay: very good today, head straight, good appetite, no double vision. In OT, sat up for what seemed like a long time with no support, back slumped when he got tired, balance improved - withstood prods from back, a bit from side, but fell over when prodded from front. Reaches with left hand, but with flailing motion. But at least he’s reaching. That’s a big improvement.

I was angry because I felt that any lack of consistent progress in PT on Jay’s part (there is no lack of progress, just a lack of consistency) leading to discontinuance of PT was mainly due to

1. inadequate medication for his headaches, even after requests from his neurosurgeon, who knew best what he was experiencing
2. side effects of the immunotherapy, (edema and associated lethargy) also inadequately and belatedly treated
3. inadequately and belatedly treated visual problems which made it difficult for him to see and therefore control his left limbs.

I was angry because if, as a result of this PT decision, we lose insurance coverage, then we will be forced to pay, out of our pockets, $9,000 a month for sloppy and inadequate care that was actually damaging him.

At this point I got super-proactive. I read ALL the nursing notes and charts every morning and evening. I asked more questions. I raised Hell. I became a royal pain, but I made things happen. The "keeping of the journal" suffered. Notes are sparse and usually undated.

I discovered that Jay hadn't had a bowel movement in ten days and no one had done anything about it. The nurses were not aware that rectal stimulation with a brain tumor does not cause the same feedback problems as with spinal injury, and that they cannot use water ememas, it must be oil, but a simple stool softener would do wonders. I tried to educate them, and then just went out and bought the stuff myself. Occasionally I locked the door and removed rocks the old-fashioned way.

He was supposed to get a shower once a week, but for three weeks in a row, the aides had a meeting during Jay's shower time, and he was not rescheduled. I gave him showers myself, a few times a week, late at night when the shower was free.

I discovered what "not medically indicated" meant, as pertained to his PT. His diagnosis had been high-grade oligoastrocytoma, but after the last surgery it had been downgraded to oligodendroglioma, a less virilent tumor. The worst is a glioblastoma multiforme (GBM). I had, right from the beginning, asked all his doctors if the astrocytic component could be GBM, and they always said no, that the cells didn't have the characteristic look. Which is good, because the prognosis for GBM with Jay's history of recurrance is extremely bad. Well, under "diagnosis" in his charts, someone had at some point changed it to GBM!, apparently without having consulted any of the doctors who mattered. The "indication" for PT is a possibility of going home and living. GBM says not expected to live. And that's the REAL reason the PT was stopped.

I attempted to get a copy of that page. Copies were something like $1 per page (an obvious attempt to discourage copying), and you were not allowed to make the copies yourself. An "order" had to be placed. I bit the bullet and ordered copies of like 50 pages, which were not delivered to me for more than a week. And when the copies arrived, all the bad stuff in there, like the misdiagnosis, the lack of bowel movements, the overlap of Lortab and Oxy-IR, the big holes where prescribed meds had not been dispensed, all of it had all been "corrected". How cute.

I helped him brush his teeth morning and evening on the days I was there. If I was away one day, the next day I found food packed between his left jaw and cheek. With his left-side neglect, he was not aware it was there and was not able to remove it with his tongue. It was obvious no one was helping him to brush his teeth when I wasn't there. When I asked the nurses why not, I was told "there wasn't any point", and I was shown the intake form, where under "teeth", it said "missing, broken, decayed ...", all the bad stuff. This was a man who brushed his teeth three times a day, who visited the dentist for cleaning every six months, and was never in there more than 20 minutes. His teeth were perfect.

It took some digging to find out what had happened. An aide explained it. They had our address wrong. Instead of our village, they had a similar-sounding section of NYC - a section by the docks, populated mostly by people who, well, "you don't want to look in their mouths", as the aide said. Because of the wrong address, they had made a bunch of assumptions without ever checking, like that he never brushed his teeth, and wouldn't mind not having had a shower in a month. You can bet I set a few people straight on that!

I asked if we could bring in private nurses (to ensure proper monitoring and medication, and personal care). Dr. Feal3y said no, it wasn't necessary, and would not possibly be approved. I hated him.

This was a multistory building, and Jay was on the third floor (I think). There was only one bank of two elevators, and they were taking people downstairs in wheelchairs for PT/OT all day long. During meal delivery times, three times a day, for like two hours every time, the kitchen staff "locked" one elevator for their exclusive use. Three days a week, Jay had to go to Nalitt for immunotherapy. The ambulette would arrive, and the driver would come up the stairs to get Jay, and, this is not an exaggeration, we often had to wait up to two hours before we could get on the elevator to take him down. It made for a very long and difficult day for Jay.

Having been in a fire, escape routes concern me. I asked how they planned to get residents out if there was a fire, and no one had an answer. There was no coherent plan for getting people out. They'd point to all the fire stairs, but almost all the residents were incapable of handling stairs. I thought it odd that most of the ambulatory people were on the first floor, which made no sense to me.

Our insurance company always wanted and paid for a minimum of three weeks of meds at a clip. The Hellhole doctor would arbitrarily D/C meds, but I never found out what happened to those unused pills. We never got a refund. The nurse's cart had a "chamber" for each person, and when something was stopped, the bottle just disappeared from the chamber. When they were arbitrarily restarted three days later, we had to buy a whole new batch. When Jay was discharged, a new three-week supply of all his meds had just arrived like two days before. I foolishly assumed we would be taking them with us, and then found out that they would allow only a five-day supply to be taken home. This was serious - it takes our little local pharmacy more than a week to dispense Oxycontin and Fragmin, because they had to be specially ordered and required special handling. I freaked. I insisted that either they allow us to take the whole supply, or they refund the moneys paid for them (it was over $800 worth of meds we'd paid for and they refused to allow us to have). I got the insurance company in on it too. I won. We took it all with us.

There are places online where you can get all the state inspection reports on nursing homes, and can see all the complaints and incident reports. It is state law that ALL mistakes in medication MUST be reported. Also, all complaints of thefts and so on must be reported. I had checked these sites before we agreed to the Hellhole, and the Hellhole looked good. During Jay's stay, I filed multiple complaints about medication errors (the wrong stuff, the overlap of Lortab and Oxy-IR, the yellow highlighter causing arbitrary D/Cing) and the theft of his radio. I continued to check the website after we left and for the next year, and, surprise!, there were NO medication errors or thefts reported to the state. Unfortunately, I have no proof. I suspect the Hellhole's paperwork will show no errors, no thefts, and no reports filed.

In early May, when the Hellhole's opthamologist had STILL not made it in to see Jay, after numerous requests and promises, and Jay's eyesight was almost totally gone, I made an outside appointment with an independent othamologist. Believe it or not, the Hellhole staff attempted to prevent me from taking Jay to the appointment. The opthamologist was aghast. The optic nerves (I forget what that point in the back of the eyeball is called) were completely and utterly eroded, to a point past redemption. He said it was due to too much intracranial pressure. No shit, George. Wanna tell Dr. Feal3y that?

I had to get him out of there.

Jay had another round of immunotherapy during late April and early May, I think. At the end of that round, he was to have six weeks or so off before it would restart. I wanted to take him home, where he would get his meds on time, where I could take REAL care of him. We could have a physical therapist come in, and Sunnyview had taught me how to exercise him, lift him. help him. We could do it. But the Hellhole told me that if I took him out before they were ready to discharge him, he could not come back. What was required to discharge him? He had to complete the physical therapy and be certified capable of ... whatever. Duh? The physical therapy you keep stopping? At that point, I told them that I'd seen REAL PT at Sunnyview, and this Hellhole was just playing at it.

So Jay and I talked about it, and I bought the ramp-equiped van, and I brought him home. And we weren't going back. He was completely blind now, and so he couldn't sit comfortably, let alone stand, transfer, walk, feed himself, anything, because he couldn't see his left side to control it. His mind was actually pretty much fine, even with a quarter of his brain gone.

When his "back home" doctors saw his condition, and heard what had gone on in the Hellhole, they wanted Dr. Feal3y reported. They said that at the very least, Dr. Panullo should report him for failing to respond to her phone calls and faxes. Some pressure was put on her, but she was very reluctant. Her assistant told me that Dr. Panullo would have other patients that would need a place to stay while undergoing therapy, and she didn't want the Hellhole to refuse to accept her patients.

Politics.

Looking back, I suspect that a lot of Dr. Feal3y's stupidity was territorial. He didn't like other doctors telling him what Jay's care should be, therefore he had to do it differently just to exercise his power. The understaffing at the Hellhole that led to Jay's not getting his meds on time was purely budgetary. They really didn't care.

At the end of the six week hiatus, it was obvious that Jay would not be able to withstand another round of immunotherapy. We had looked into having it done in Albany, a trip he might be able to handle, but he was too weak.

The Hellhole and Dr. Feal3y had damaged Jay badly. In later MRIs, it seemed that the immunotherapy had been working. But the blinding caused by the poorly controlled edema kept him immobile, which led to physical deterioration, in spite of my exercising him almost constantly. His liver and kidneys were damaged. That's what eventually killed him - organ failure. Not the brain cancer. That, we almost beat.