The Art of the Possible

Joe's writing, Katie's footnotes.

Good and bad, of course, are relative terms. And when you’re dealing with cancer, that relativity takes on new shades and nuances. So today was a good day; I can see how a lot of people might find it a bad day, but we choose to interpret it in the most positive light.

The MOST positive thing this week has been being back in the care of the Cleveland Clinic. This is in no way a slam against the U of M Hospital, because the care we received, both physical and emotional, was absolutely fantastic. But there’s something about Cleveland that feels like home; between the familiar faces of Nurse L and Dr. R, right down to the furniture and the ambient music. No CNN or Fox News on the TVs here to get you worked up and anxious – everything is designed to be a warm, healing environment. And I like that a lot. I just have so much confidence in these guys. (1)

One measure of that confidence is in the conversations we are just able to have not just about the clinical progression of the disease, but about our personal experiences dealing with it. We mentioned that E has been notably effected by things, and gets really clingy and edgy whenever I have appointments. Nurse L suggested we see if she wants to write a story… ‘for other kids whose parents are dealing with cancer,’ to tell ‘them’ what kinds of emotions you experience, and how you can deal with them, and what to expect. We broached that idea with her tonight, and she lit up! She wants to help – even to the point where she wondered if the two of us could write a book together about it! (2)

The big clinical takeaway from this week is that the cancer hasn’t grown.(3) We already essentially knew that from the U of M scans in late October, but Dr. Rini confirmed a lot of what we’d learned up there, and helped us chart a course forward from here.

Basically, it’s like this: The little tumorettes on my lungs have stayed the same size. On one hand, that sucks, because the intention of the IL-2 treatment was to make them go away. That didn’t happen, which sucks, but… they didn’t get any larger. The fact that they are growing extremely slowly, the fact that it’s localized to the lungs, the fact that there aren’t any more than nine of them (possibly less) (4), is pretty good news – and it combines for this result: Since there’s no appreciable growth, and since the side effects of the next meds up – sutent and panoxapib – are pretty serious, we’re going to take a wait and see approach.

Part of me is annoyed by this. I want to take the battle to the cancer; side effects be damned. Dr. Rini said today that, from all he’s seen, IL-2 is the single worst treatment for any kind of cancer there is, and hell, we got through that! But a bigger part of me is really, really grateful that we essentially get at least the next four months off from any kind of treatment. I’m just now really starting to feel more like myself after the summer sessions at U of M. It will be nice to maintain this quality of life for another quarter year, and hopefully longer if the nodules stay where there at.

So we will wait, and scan. Wait, and scan. And if the little baby tumors decide to grow, we’ll pull out the drugs and try to slow them down. Dr. Rini said today that the median survival time after going on drug is 2.5 years; half of people get less than that, half get more. Based on my physical condition, and the slow progression I have had so far with disease, he says he’d definitely put me in that latter half. (5)

I wish I could say that I stay positive all the time, but I simply don’t. Sometimes, during a workout, I’m trying to take a deep breath, and it doesn’t come, and I wonder, my God, have the tumors grown? Is the clock ticking? Am I looking at months rather than years? It eats away at everything in your soul, and makes it incredibly hard to live within the moment, and REALLY difficult not to get upset or jealous when people talk about their retirement plans, vacation ideas for when their kids are older, and on, and on.

Two years ago, it would have tripped me out if someone said that the GOOD news is you don’t have less than three years left! But right now, I’m pretty damned happy about that. There’s also a best-case scenario worth mentioning: There’s a chance that the IL-2 may have arrested the progression; should these nodules stay the same size through next July, Dr. Rini said he’d be willing to declare a truce with the cancer, and back off the check ups. (6) Being back with these guys, I feel a lot better mentally – we’ve got some real time, we’ve got some tools, we’ve got some hope.

We also maintain a hope that things will change in treatment options in this multi year window. There are new cancer drugs going through trials every day; new treatments including the genetic mapping, the weird modified AIDS treatment… novel, crazy stuff that might just provide a legitimate cure if we can push the game clock out a little further with each step in the process.

Bismarck said that politics is the art of the possible, but he may as well have been talking about cancer treatment. I don’t want to be too cliché, but it is what it is. And that’s the way you have to look at this delicate dance. Sure, we have some down days here. I can’t remember many days in my life worse than when we were told the IL-2 didn’t cure it (although The Fumble and Jose F***** Mesa do spring to mind). We deal every day with what is possible; and we have faith that the impossible might just be possible, too.

(7)

(1) However, they did change the cookies I liked so much in the cafeteria.

(2) E asked about selling it at Kroger already. I'll let you know if she has a signing party.

(3) We knew that 10/29 from UM. No new scan were done at the Clinic.

(4) UM had 9 spots the radiologist commented on in the written report. Dr. R has said 2 or 3. UM did a very detailed 1.25mm slice with the CT scan. Dr. R is looking at the big picture of 4 mm slices. I'm ok with what Dr. R said.

(5) The 2.5 years is once drugs are started. We are not even at the point yet. Dr. R also said stay off Dr. Google.

(6) The UM doctor had said he has a patient who has stayed the same for 10 years. He now makes his yearly check ups a road trip on his motorcycle from WI.

(7) We have to check in with the vascular NP but since there is no treatment taking place and no growth we hope Joe will be done with blood thinners too.