It's Friday, so I'm scared as hell. But yesterday was a big day: Did the radiation simulation in the morning, met with Dr. Anderson, and then got a very uninspiring phone call form Sloan-Kettering. Discussions in turn:
I AM TATTOOED: Apparently one of the things that was not discussed in my two prior meetings with the Radiation Oncology people was the fact that they put permanent marks on your body. So I got three tattoos yesterday. Awesome.
Radiation Oncology is pretty advanced stuff. They've made it to the point where the radiation beams can be focused to the point where they don't cause much collateral damage (unlike chemo). This is a good thing. The bad thing is that the ability to minimize collateral damage depends on keeping the patient in the exact same position during every treatment.
This is done in two main ways: keeping my arms in some sort of apparatus on the treatment table, and drilling holes into my sides and my chest. The "tattoos" are actually little dots. I have three of them: one on each side of my torso, and one in the "midpoint" of the radiation field. By lining up laser beams (LASER BEAMS!) with the dots, the RadOnc people ensure that I'm in the same position during every treatment. Then, computer aims the beams and zaps my tumors. Piece of cake.
Also, during my simulation, Dr. Kim - previously referred to as a hybrid of Mr. Miyagi and Pai Mei from Kill Bill - just APPEARED in the room. There were like three RadOnc techs in there at the moment, I was laying on a board chatting with them, and the next thing I know, Dr. Kim is hovering over me announcing that the simulation shall begin. I think he came out of the vent or something. He's sneaky.
Anyway, I'm looking at about 15 treatments, 5 days a week (or so), with relatively minimal risk. All in all, a good deal there.
DR. ANDERSON ACHIEVES CONSENSUS: Had my final-ish treatment meeting with Dr. Anderson after the simulation, and he was again firm in his recommendation that my current treatment regimen is the way to go. He took the recommendation back to the Henry Ford tumor board, discussed my case with several other doctors, and apparently they all came to the same conclusion. I don't know how much this changes my analysis, because...
IT WAS JOHNNY HOPKINS AND SLOAN KETTERING: The results of the poll were pretty tight, but I ended up calling all four hospitals (MD Anderson, Sloan-Kettering, Mayo Clinic, and Stanford). I can't get a hold of a human being at Stanford; I've left multiple messages to no avail. The Mayo Clinic doesn't see patients without an office visit, and I don't feel like doing that. MD Anderson actually has a pretty simple mail-in review process, but I don't know that it's the best option for my complicated case (it forecloses follow up contact with physicians).
So that leaves Sloan-Kettering, and I actually got somewhere with the people over there this week. I spoke to a live human at Sloan-Kettering, explained my case, they told me to fax some documents, and I did that at 1:30pm yesterday.
Two hours later, I received a phone call from my contact at Sloan-Kettering: "We recommend CNS prophylaxis," she said. And that was it.
Excuse my swearing, but what the fuck was that?
First of all, did the people at Sloan-Kettering take a class in "Breaking Major Life News" from the New York Board of Law Examiners? I mean, who does that? Did you anticipate that, as a patient, I might have a question? Or that you can't just dole out two months of intense chemotherapy like you're giving out Halloween candy? Sometimes I wonder what the hell people are thinking.
Second, what the hell is "CNS prophylaxis?" I mean, I know CNS means "Central Nervous System." And I know what prophylaxis means, but only because I've read enough Justice Scalia Miranda dissents to become familiar with it. What if I was a normal patient, though, who wasn't familiar with medical terminology? How the hell do you call somebody and say, "We recommend CNS prophylaxis." What the $%@ does that mean to me?
Third, more specifically, there are a number of different things that could constitute CNS prophylaxis. You couldn't even come up with one? Or...you know...explain to the patient what the hell your recommendation means to him in real-world terms?
That phone call sent me through the roof. It literally gave me nothing. There were a couple other bits in the phone call, but it was honestly about two minutes long. I explained - on multiple occasions - that I had a difficult case with conflicting diagnoses and conflicting treatment options, and that there had been a lot of discussion between my doctors so far. I was of the understanding that they wanted some preliminary information before figuring out the best way to proceed. I was not expecting a one-sentence recommendation after two hours and a cursory review of some of my medical records. I can look at a pathology report, see the word "Burkitt's" and then recommend blasting my body with so much chemo that I give myself Leukemia. But that doesn't do me any f'ing good. So that's why I contacted one of the "top" cancer centers in the country. For their expertise. Not a quick glance, a sentence of a few more weeks an hell, and a "Peace out, homie."
I still can't get over this whole episode. I can't even adequately explain the phone call. I answered, my contact informed me that the doctor I thought I would be dealing with was out of the country, but that another doctor had reviewed my case and "recommended CNS prophylaxis." That was sort of weird, I thought, two hours after sending my records over and without any additional review or discussion. And then I realized my contact had the "I'm done with this phone call now" tone in her voice. And I just froze. I couldn't believe that anybody in the world would believe that this was the best way to handle this situation.
I think the best way to describe the way I felt after the Sloan-Kettering fiasco is this: It's as if Mitch Albom mated with the bar application process. And I'm serious about that: Mitch Albom, because I felt an enormously complex and detailed case had been distilled down to simple, knee-jerk reaction that answered no questions and left the recipient feeling confused, angry, and uninformed; the bar application process, because I felt like I was talking to somebody who was "just relaying information" from the ambiguous, faceless decision-makers above her, and couldn't give any answers.
My main problem with this whole confusing saga boils down to this: Dr. Al-Katib told me that "he would treat his own son" the way I am being treated. I think that's true, and I think that's a very strong statement. But I don't think it's true of the people at U-M and Sloan-Kettering. I think they would treat me like that; not necessarily themselves or their children. It's just really easy to recommend treating through the roof when you don't have much invested in the case.
I'm more concerned because while Dr. Al-Katib and Dr. Anderson have readily acknowledged the drawbacks of their position, U-M has not. Al-Katib and Anderson readily admit that if the goal is to obtain the lowest possible relapse rate, then we should blast the hell out of things. But there are two major concerns there: 1) Just how much will we reduce the rate of relapse and 2) What are the additional risks of more treatment. Al-Katib and Anderson have been very clear that they believe that 1) The rate of relapse in my case is lower because of a number of factors, (early stage, good response to treatment, low risk factors, location of tumor, etc) and thus, more intense chemo wouldn't reduce the rate that much, and 2) More intense chemo raises the risk of toxicity related problems. It's no use to prevent relapse if you're just going to make my heart explode in 20 years.
From Sloan-Kettering and, to a lesser extent, U-M, I don't get that. I get some variation of "it's Burkitt's treat it as Burkitt's" or "CNS prophylaxis just to be safe." I've never had a full discussion about the drawbacks of more intense chemo, and there's no doubt there are significant drawbacks. Maybe you feel that the benefits outweigh the risks, and that's fine. But it's my call. Especially in the case of "We recommend CNS prophylaxis." How the hell can you make that call? Are you aware of the risks I'm willing or not willing to accept?
Honestly, I actively try to talk myself out of what Al-Katib and Anderson are saying. I know I inherently want to believe what they're saying - that I'm done and this thing isn't going to come back. But I know my inherent bias and I try to guard against it. But the people who keep telling me to go shoot horribly toxic drugs into my spine and brain are not currently demonstrating the appropriate amount of care when they advise shooting horribly toxic drugs into my spine and brain. Their arguments are addressed and sometimes countered by Al-Katib and Anderson, often with specific studies, statistics, and journal articles. I haven't seen the same out of the people who tell me I should go lay in the hospital for a while and feel terrible.
And I can't shake this thought: These are "top ranked" cancer centers that are interested in and judged by their numbers. Those numbers include the "cure rate" and the "relapse rate." There is no doubt that my chance of relapse will be lower with more intense chemo, the same way it would be with 6 cycles instead of 4, or 8 instead of 6, or radiation as opposed to no radiation. If I don't relapse, well, I'm "cured." That's true whether or not I have a million other problems caused by more intense chemo. So the incentive is to treat like a mofo with only the relapse rate in mind. That's an easy recommendation to make if you don't have any contact with me, or don't have to deal with me on a daily basis.
In short, I feel like Dr. Anderson and Dr. Al-Katib are treating me. I feel like U-M and Sloan-Kettering are treating "a lymphoma patient." A statistic. Maybe I'm wrong, and there's certainly time for these hospitals to change my opinion. But that's where I'm at right now. Until I hear something like, "Nick, I know you're early stage with no bone marrow involvement. And I know you are low risk and have had a good response to treatment. But we still think more intense treatment is the best option, and here's why," I'm not putting myself through that shit. And if the case is that strong, it shouldn't be hard for a doctor to say that. But I haven't gotten that so far.
So I'm calling the good people at Sloan-Kettering back today, and I'm going to explain that I need more. As a patient who has been dealing with this hell for a month now, I need more than a one-sentence recommendation based on a partial review of my medical records. I need more than a "just to be safe" recommendation. I can look at a pathology report, type the disease into Google, and figure out how to treat whatever that disease may be. I don't need to consult the "best" doctors in the country for that. I need context, information, and an explanation. If I can't get it from them, then I'll find somebody else. I can handle the fact that there's no "right" answer here so long as I know why your answer is what it is. But I have to know why. And that's what I'll try to figure out.