Thursday, January 29, 2009

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!


  1. Nick,
    When I asked you to pass on that "cowboy"
    joke to Jill, I had no idea BB would be the first one you met. I'm immediately rescinding
    my suggestion to Jill!!!!!! :) Denise

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