Hot diggity damn, I think I finally have the Johns Hopkins thing sorted out. After a month (literally – a month. I first called them on February 1st), it looks like I’ll be trekking up to Baltimore on Friday morning.
I decided to go up to JHMI primarily because of Dr. Li. Dr. Li graduated from Johns Hopkins Medical School, so she knows some of the doctors up there and was able to give me a recommendation. That recommendation was Dr. Richard Ambinder, and I should be seeing him on Friday.
I also wanted to take advantage of having one of the best cancer centers in the country only 45 minutes away from me. At least while the “more treatment” question is still kinda-sorta up in the air.
The appointment-making process was pretty frustrating, but the upside of starting so early is that I was able to get all my records sent over (and hopefully reviewed) as well as my tissue. There’s absolutely no reason for anybody to look at my tissue for the 8 millionth time, but JHMI demanded it, so whatever. At least it gave Henry Ford a reason to get my tissue back from the NIH (the NIH tends to keep the tissue they receive if it’s sufficiently weird. Mine was, of course).
This was a long slog that began to stress me out last week. And I was pretty upset about that. I started the appointment process over a month before I actually needed an appointment for this very purpose, and I would have blown a gasket if I got a, “We can’t get you in until the end of March” line. I know how difficult getting an appointment can be, especially at University Hospitals. So I started early, got my records over in an instant, flawlessly executed a triple tissue swap, and dropped about 10 e-mails and 7 phone calls on these folks. And as we got closer and closer to March, I started getting worried. I would have let the whole thing go, except periods of radio silence were punctuated by periods of great hope.
Well the periods of great hope won out, and I should be able to do the doc visit and PET scan in one trip. Because it takes a couple of days to read the PET scan, I didn’t want to have to fly back home since it would have required at least two weekdays. But getting the scan done now, in early March, along with the doc visit will allow me to come up with a plan in advance of the scan, and go from there once it comes back.
So what’s the expectation? Well there’s a lot going on. Back in January, when all the docs agreed to lay down their arms, everybody took more or less a wait-and-see approach. Dr. Li and Dr. Advani would recommend CNS prophylaxis – chemo into the spinal fluid – either way. If there is still residual activity on the scan, they would recommend additional systemic chemo, which is the really intense stuff. Dr. Anderson left us with, “just watch, and see what the next PET CT shows.” My guess is he’ll stand pat either way. Dr. Al-Katib thinks I’m in a great situation without additional treatment, but he wouldn’t stand in my way of doing more. It’s a cost-benefit game, he understands that, but he’s still the expert. If he’s comfortable, I’m pretty comfortable. Dr. Zelenetz, from Sloan-Kettering, independently recommended getting re-scanned in March, so we’ll see what he says. My hunch is that he’ll also check if he sees no residual activity.
That leaves a lot resting on the notion of “residual activity,” and I’m not quite sure what the deal is there. I had radiation, so that pretty much takes the chances of relapse in the original tumor site down to near zero. My left upper chest/axilla area is a relative wasteland right now. Shouldn’t have any problems there. There’s always the concern this could pop up somewhere else – that’s why we do the scans – but the consensus is that this will be more a “baseline” PET CT – a very calm one, from which docs can measure any changes. There was some “residual activity” on my last scan, but that was more a function of getting scanned only two weeks after radiation. Radiation has continued effectiveness for a couple months, so that likely took care of anything else at ground zero.
Personally, I’m pretty excited to meet with Dr. Ambinder. I’m excited to meet with an independent doctor face-to-face who has everything at his disposal (records, pathology, tissue, history) and can give me another perspective on this whole issue. I certainly appreciate Dr. Zelentez and Dr. Advani, but there’s only so much they can do to settle this issue under the table and on the phone. From a patient’s perspective, it’s so valuable to be able to sit down with a doc and discuss things in person.
The downside is that I’ll be back in purgatory next week. I’ve largely succeeded in not letting this stuff take over my thoughts for the past two months. It’s helped that I’ve been in DC, away from a million little things that remind me of my illness (this is another reason I chose to go to Baltimore – I have only horrible, Maryland Professionalism Course-induced memories of that city). Work has kept me busy. May day to day life is unrecognizable to the guy that set a personal record for consecutive days in sweatpants this fall.
Given that I can see all my docs ending up in the exact stalemate that we were in back in December, I’ll probably end up going with whatever Dr. Ambinder recommends. He has all the information in front of him, I’ll give him more on Friday, and I assume this will run through the JHMI TUMAH BOARD as well. I think I made the right call in January. But if everyone reverts back to their old positions, I’ll be right back on that fence. Dr. Ambinder gives me the best chance of getting off it in a hurry, and if I’m confident in his recommendation, I’ll go with it.
I’ve been overwhelmingly “just fine” for the past two months, but there’s always a little bit of nervousness. Of course, after you get bit by the cancer bug, you always fear and expect the worst. So there’s always the fear that the scan is going to reveal something horrible, off the wall, and unexpected. With me, I’m sure that will be the case. But I also sit back and realize that that nobody has even mentioned that sort of thing as a remote possibility, and 6 outstanding doctors from all over the country told me to do exactly what I did.
Either way, I’m really looking forward to getting over this first hurdle. Whatever decision I have to make after this, so be it. At least that whole terrible chapter will be drawing to a close as well. You want nothing more than to put this whole thing behind you, but once you accept that you can’t really do that – at least not for a while – it’s not that bad. It’s the whole equilibrium thing. Whatever the situation is, you recalibrate pretty quickly. Once I get past this, I’ll finally be able to throw the thing on cruise control, close my eyes, and pray to God I stay on the road.
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