Thursday, January 29, 2009

Day 4...hilarity and inhumanity...

I originally titled this something far more dark, because I end this day in a mood that questions any effort I have to fight this sh*t.

But there was too much funny stuff going on not to have some levity.

I checked in at 7:45 this morning for the second half of my MRI, which I learned would be long, and also involve (whooo-f'in-eee) ANOTHER IV. Every vein is looking like a flute at this point...I'm running out of places to stick.

Also, they made me sign a form indicating that I knew insurance was at the moment rejecting the procedure, so I'd be out of pocket $25K if they kept that attitude. What could I do? Here's a GREAT idea. I can call the alarmist nurse!!! What a moron I was. I called her and she started going off about how essential this was and how I could have brain tumors, blah blah blah. Anyhow, I went to sign the form.

And this is when I started laughing.

I am going to give away BB and my location for all but the least curious among you, but I might as well say, now, that I am in Arkansas. As I remarked to my original oncologist: "Arkansas? I thought they were still working on rickets, much less incurable cancer!" But Sam Walton of WalMart fame died of this disease, and donated $200 mil to the University here to build a myeloma clinic. And they hired BB away from MD Anderson in Houston, which is world-renowned in Cancer care. And he is the guy with this protocol that can deliver a cure...and so here I am.

So I've joked with friends and relatives many times about the medical community here. The three top 10 jokes I have shared privately but have been afraid to post for fear of giving BB away are:

1. The rickets gag
2. "I feel like I am going to be on a combination episode of Hee Haw and Discovery Health Network"
...and, finally, based on what I observed upon arrival...
3. "The capitol building's flag is at half-mast...did Goober from the Gomer Pyle Show die?"

Okay. I have laughed and joked about these things, and about the intake nurse wearing a barrel, and about instead of people signing in they just "make their mark." Hilarious, right?

Okay. I sh*t you not, here is the form I had to sign at the MRI this morning.

Do you believe this? Do you see where underneath the line it says "patient's signature...OR MARK?????"

I was going to put a big ol' "X" there and see what happened, but sanity prevailed and I signed my name in the Yankee tradition (all 26 letters of the alphabet come into play).

Okay. So I went through 90 minutes of MRI madness, which included YET ANOTHER injection, this time of some sort of magnetic crap.

And here, I must issue an aside. I have been exposed to more radiation, magnetism, etc. than anybody should have to. And I have yet to develop any superpowers. This, I feel, is bullsh*t. I should have the combined powers of Spiderman and Magneto at the LEAST at this point. The world should bow to my very whim. Add to this the many, many chemo agents that should turn me into a powerful mutant and the multiple PET and CT scans that expose me to cell-transforming radiation, and I should literally be able to control weather, turn iron into gold with a glance, and in short control the destiny of millions.

Instead, I have cancer and I'm stuck in Arkansas. Again, I say..."I cry bullsh*t!!!!!!"

Okay. I leave the MRI, we sneak a tiny little snack and have a sip of water because that is all that is allowed before our painful bone aspiration that hasn't been scheduled yet. I went to the library and logged on and posted the last blog entry, and then we got called to go to the next test.

Now they had put an IV in me for the contrast in the MRI, and I had the presence of mind to ask them to keep it in and seal it off so that when I went for whatever was next, in the odd chance they would actually agree to give me versed instead of the crummy non-sleep medicine, I'd already have a line into my arm. We went to the new hospital wing where they do the CT-guided aspirations and waited.

Now the notion behind this test is they are going to use another PET/CT scanner to determine the exact location of a lesion, and then stick a needle into me and draw cells from that. Mind you, the woman in BB's office told me SPECIFICALLY they do not pierce bone in this test, and I didn't need to worry, blah blah blah.

Nonetheless, they didn't want to give me versed for this, for whatever reason. But I then learn that they are going to take the sample from my right hip (the only part of my body not in pain at this point) and the lesion is deep, so they want to give me "conscious sedation" (i.e. versed). Hooray! I kept the IV in place for a good reason! But they also said that they thought the doctor might find an easier to access lesion and I wouldn't need it. Hmm.

The very sweet nurse took me back and asked if I wanted conscious sedation and I say "hell yes, I do!"
I am lying on a gurney, and the doctor (who is soon to have his accreditation taken from him when I'm through with this motherf*cker) comes in. At first, he's very pleasant. He's probably my age, has a Dutch last name, we make small talk for a bit. Then he starts talking about how painful the procedure is and everything I will feel. I say "well, I'm gonna be on versed I won't feel a thing, right?" And he said "oh, you'll feel's unavoidable and it's painful, but you won't remember it." I thought back quickly at this point to the three previous times I've had versed:

1. My two impacted wisdom teeth being removed. Consisted of IV versed, followed by passing out, followed by waking up in recovery, followed by going home. No pain, no recollection of anything.

2. My first bone marrow test two months ago. Consisted of IV versed, followed by passing out, followed by waking up in a wheelchair, followed by going home. No pain, no recollection of anything.

3. My bone marrow test two days ago. Consisted of IV versed, followed by passing out, followed by waking up on a gurney in the recovery room, followed by going home. No pain, no recollection of anything.

Sounds great.

Now...then this piece of sh*t says the following. And believe you me, I am reporting his scumbucket ass to the AMA tomorrow. I'll call him CAH (for creepy antelope hole...the erudite among you can translate in real time).

CAH: " work for Disney, right?"
N: "Yes, I do."
CAH: "Tell me, did you have anything to do with that movie about the homosexual priests?"
N: "No, that was before my time." [this referred to Miramax's movie "Priest" released around 2002]
CAH: "Well that movie was horrible. AND NOW THE PROCEDURE WON'T HURT AS MUCH, SINCE YOU TOLD ME THAT" [I swear to God this is what he said, and he said it without a trace of irony]
CAH: "I thought about mentioning this all night...and as a Christian, it is my duty to tell you so."
N: "Oh yes, I think we fired the Miramax people over it" [internal response: as a Christian myself, you horrify me]
CAH: "Disney is about family."
N: "Well, the movie was released under the Miramax name, and it led to us firing them."
CAH: "It doesn't matter. Disney should have had nothing to do with it."
N: "I know...we respect what the brand stands for."
CAH: "Good thing."
N: "On our cruise ships, for example, we have no gambling."
CAH: [looks shot in the chest when I say the word 'gambling'] "Good thing. It's immoral."
N: "Even though it makes money, we won't do it. And we won't own a casino."
CAH: "Good. Gambling is immoral. It's terrible."
N: "We do let ESPN televise the world series of poker, but that's a little different."
CAH: "Maybe. I let my son watch that once in a while. But I have to tell you, as a Christian I have to make a stand. With that Obama fella [I expected him to drop the N word here] in office, we may have to have an abortion clinic here but I promise you there won't be nobody working in there."

I was so horrified by this point I was beyond the ability to form words.

Then they wheeled me into the room. The idea was they would put me in a PET scanner again, check for the hot spot, mark my right hip (the only part of me which didn't hurt at that point) with a pen, scan again, and then put some versed and painkiller into my IV. After that, I would be unconscious and not feel anything, but they would stick a needle through my flesh and muscle, break deep through the bone (3 cm through solid bone) and then take a core sample. That lying bitch in BB's office who said this didn't involve going through bone will pay, I promise you.

I'm figuring "whatever, I'll be out of it, doesn't matter."

The nurse comes in, checks the IV, shaves my backside and preps it, and then the guy running the PET scanner comes in, wheels me in, they scan it, they mark my butt. The nurse then says the IV is running. I say "are you sure?" She says "yes." I say "I don't feel anything." She says "you will in a moment."

Mind you, three days ago they said this same thing and I was out like a light.

So now, I'm not out like a light, and they say "okay, now we're going to insert the needle."

I say "don't do that...I am still conscious...I am feeling everything."

The nurse says "oh it's okay, you are able to converse with us but you won't remember a thing."

I say "no, that's wrong, I am not babbling like a drunk...I am lucid, I am fully cognizant of what is going on, I am not anesthetized."

What happened over the next 30 minutes is hard to describe, other than to say it was the most painful, horrible experience of my life. These motherf*ckers proceeded as though I was numb WHEN I WAS NOT.

When they first punctured my hip bone I screamed "JESUS CHRIST!" at the top of my lungs, and kicked out at the guy with the needle.

It occurred to me that I could have said a few worse things to the born again sh*thead. So in the spirit of David Letterman, here they are:



Honestly, this m*therf*cker will pay. I will be reporting him to the AMA tomorrow.

(* I actually voted for Ron Paul, who called the current financial crisis with great accuracy)

Meanwhile, I have been operated on without anaesthesia. The went through 3 centimeters of bone. I kicked my leg out twice to try to kick the doctor (not the militant Baptist a**hole but the poor Indian guy stuck with the dirty work -- and as a godless heathen he'll burn in hell, no doubt).

After this, I left. I am resolved not to let them TOUCH me again unless they, without offering another option, agree 100% to administer WHATEVER sedation I demand. I NO LONGER TRUST THESE ROTTEN PIECES OF SH*T TO ADMINISTER MEDICATION.

They will pay for their sins. I wept from pain and emotional distress for the rest of the day.

I am on FIRE with rage. They are in deep, deep, deep sh*t.

Good night, all.

BB's clinic day 3

Sorry no update yesterday, but it was a very long day.

We had a meeting with BB himself, which is evidently a rarity and reflects the efficacy of personal lobbying and the influence of PinnacleCare and a number of common friends. This was scheduled for 7:45AM but we were warned by one of his nurses not to get there until 8:30AM. As it happens, this was good advice because when his resident came in to check my vitals at 8:45, he said nobody should have told us to come at 7:45.

BB himself came in at about 9 and apologized for being late. I was prepared for his appearance and he did not disappoint. He came in wearing tight leather motorcycle pants and jacket, a mustard-colored shirt that was almost fishnet style netting (albeit a little more concealing) and cowboy boots. He's 65 so this whole getup is disorienting at best.

He spoke with us for about 90 minutes. There was a lot of good, some bad, some ugly.

The good:

* He told me he had reprimanded his assistant for speaking out of school and exaggerating things to make herself feel important. He said, for example, that all my blood counts were perfectly fine. There's no need for any plasma exchange or any of that nonsense.

* He told me that since October, they have no longer considered the Chromosome 1 issue that I have to be a high-risk factor. Jill breathed such a huge sigh of relief that I thought we both might break down crying right there.

* He pulled up the latest survival data that his protocol has and showed that the low risk group, even with Chromosome 1, have a long-term survival around 70% or so.

* He noted, importantly, that these survival statistics include death from OTHER ailments. So if a Myeloma patient is cured, and then steps in front of a bus, he is counted as dead for purposes of these statistics. That means survival could approach 90%!

* He said that he operates from the gut and isn't interested in randomizing trials to prove a point. If he believes that something is going to work, he will do it to save lives. This is probably why people that are more clinically strict have claimed selection bias.

* He called several doctors to get my gene array profile expedited.

We will not know if I am low- or high-risk until Friday, which is when he will get the gene array profile back.

The bad:

* According to the PET scan, I have over 100 tumors forming. There are five that are more pronounced than the rest. The biggest of these, no surprise, is on my sixth rib on my right side. I have others on my left clavicle (neck-to-shoulder), left scapula (shoulderblade), right ilium (hip) and I don't recall where the other two.

* He was concerned about the second clone. He called some gene specialists and discussed it with them with us in the room. It is not a myeloma clone. He asked them to do extra work on the marrow to get this sorted out. I then tepidly said that KA had said he sees this in about 30 percent of patients and not to be overly concerned about. BB almost jumped out of his seat. He said "that's complete bullsh*t! total bullsh*t! I have known KA for 20 years, and he's a friend, but I must say that is bullsh*t. I'm going to call him right now." And so he did. KA was not in. BB went on to say that "we don't know what it is, and it may be nothing, but to say 'don't worry about it' is irresponsible." He also noted that he doesn't see this often at all, and that when he does see something like this it is usually in the elderly and as a precursor to myeloblastic dysplasia (which is itself a precursor to Leukemia, and needs an allogeneic transplant). I'm trying not to worry too much about that, but it is in the back of my mind.

The ugly:

* He ordered a "needle aspiration" of one of the lesions. He asked me if I would be willing to do this, and I said "as long as you knock me out with some more versed, no problem." Then they told me it would be the right hip, which really stinks as literally the only part of my body that doesn't hurt right now is my right hip and leg.

It took me a while to place BB in my pop-culture lexicon, but I think he is closest to Anthony Hopkins' character Van Helsing in Coppola's Dracula Remake. A swashbuckling teuton with an accent who is equal parts eccentric, iconoclastic and plain-old kooky. But he is undeniably brilliant. I felt as though I was in the presence of someone who knew he was very, very close to curing this disease and has seen all its ins and outs.

It is safe to say that Jill and I liked him a great deal. For all the controversy, which I understand, he's the type of person that I typically get along with very well.

We then met with the nurses to scramble to move the scheduling around. I wasn't supposed to have an MRI until this morning, but they now needed the MRI in order to know where the tumor is so they can guide the needle. So that had to be moved, and my echocardiogram/EKG and pulmonary work had to be moved as well.

I asked them to confirm they would give me concious sedation, and they balked. I tried to be firm, but they eventually talked me out of it (guilted me into doing it without versed, actually, is more like it) and instead said they would put me on demerol (painkiller...cue the heavy metal song of the same name) and ativan (something to relax me).

We got the MRI done -- they just did pelvis and lower back so it took about 40 minutes. Then we went to fill the prescription for all these meds, which is complicated, involving multiple injections, lollipops I have to suck on and/or chew depending on which one, pills to swallow and/or crush and put under the tongue depending on which one, etc. Meanwhile anxiety is rising.

We were waiting for the prescription for about an hour when the nurse called, and he said the tumor was so deep that the doctor who would be doing the aspiration did not feel good about doing it without versed. I TOLD YOU SO!!!!! Anyhow, they were now going to call it off, do the rest of the MRI tomorrow, and try to find a different tumor closer to the surface. Why they won't just knock me out is beyond me, but at least it was a stay of execution so we left the hospital.

We met up with Lois, who went through the program, and her husband Frank for dinner. They are great people and we had a nice time comparing notes. Lois had no problem with induction, but developed complications after both of the transplants (enough to suspend all consolidation treatment after the first, and then after the second she didn't eat for about two months). She hastened to add these were unusual and probably related to pre-existing Lupus and kidney disease on her part.

There's a lot more to cover...but a day later I am finally off to have this procedure done. It does not sound like it will be pleasant. I'm actually typing this from the library in the cancer center here...tonight's update will bring you folks news from today.

Thanks to all of you for reading and for your support! Jill and I greatly appreciate it!