Friday, August 5, 2011

Angst and Confusion

I'm still trying to make sense of yesterday. Meagan feels a sense of palpable relief - that these tumors can be addressed and that she shouldn't pay any attention to probabilities and outcomes. The specialist, Dr. Vermeulen, was very positive, direct, and reassuring. "Oh these are nothing, we can handle these".

I didn't have any doubt that the GammaKnife could zap the new tumors - I have read enough about the process to understand its efficacy. What was far more salient, in my view, was that there were these new tumors. Which means that the melanoma really is in the brain (it wasn't doused in the craniotomy and subsequent Cyberknife of the surgical area) and is spreading (the tumors are not clustered). The odds that these three tumors (yes, three tumors, Kaplan's original communication to us was incorrect) will be the last tumors we see in the brain are pretty low. It's the "seed and soil" theory - once it's spread, it's likely to sprout. Vermeulen kind of acknowledged this when she said that melanoma is capricious, sometimes it will lay dormant for a while after surgery. She did also then describe what whole brain radiation therapy treatment would look like if it came to that. And she described how they could zap other tumors in other parts of the body if it became necessary. She didn't get into any detail about how melanoma can be radiation resistant or that it can jailbreak and show up in lots of places in the brain and elsewhere.

As a specialist - whose job it is to zap tumors - she is very sanguine and clinical in some respects - a thorough professional who has the tools to be able to take care of what she sees on the brain MRI. She also is comforting, but kind of ducked some of the larger issues by laying the responsibility for the systemic treatment at Kaplan's feet ("he'll take care of that and will try different chemo maybe" - not really knowing how much has already been tried and that we are at the end of our options).

So I observed this interesting phenomena of one specialist saying, no big deal we can handle this (and maybe other tumors), and another generalist (Kaplan) having a slightly different interpretation  - which led him to give an overall assessment of outcomes based on the complete picture. I certainly believe that he knew Vermeulen could take care of the tumors which just emerged. But he also knows that it means that we cannot pursue any systemic treatment (beyond the Temodar she is on - which is a chemotherapy which has shown very little to no long term impact - at best you get some short term relief). It also means we cannot do any clinical trials anywhere, even on a compassionate use basis, because Meagan's brain will have swelling and irritation as a result of the Gammaknife treatment and remain on steroids and anti-seizure medication, in fact her steroid dose may be upped for a period after her treatment on the 12th. So he knows that melanoma is in charge, we have no recourse but to just get a tumor when we can, and that reduces the odds of your long term survival.

So it appears that we are going to play the game "whack a mole". Right now we are whacking brain tumors. When you whack brain tumors it means you can't bring in the last big gun out there which has any proven success rate with stopping melanoma (Interleukin 2). So extracranially (i.e., from the neck down) the disease is doing what it wants. Under Vermeulen's approach when a symptomatic tumor shows up, you just zap it or surgically remove it.

In some ways I feel comforted by this, and I sure know Meagan is. Because it takes the focus off outcomes and probabilities and gives her a little hope. Clearly she needs that hope (she has been a complete wreck since our meeting with Kaplan) and the further out there in her mind she can push that day when they say there is nothing more they can do, the better. So between now and that day - she is just going to focus on the facts at hand. And not focus on what the odds are.

It's a little more complicated for me. I'm all for zappage and tumor management. But it's pretty hard to ignore the overwhelming weight of evidence. So I can be of two minds - the mind that focuses on today and the immediate treatment of what needs to be addressed, and the long term forces at work and how little we have to deal with them. But I need to play Meagan's game, because that is what she needs. So no more talk of outcomes and probabilities. Just a focus on what we have at hand. I'll keep the overall awareness of where we are in the back of my mind. And juggle those dichotomies...

1 comment:

  1. Just came across your blog. My heart goes out to your wife and family. I am Stage 4 as well,and I strive to keep up with all my options on a ongoing basis. I have been NED for 2 years. To be in the position of having the limited options available for Melanoma Treatment even more limited is frightening. I appreciate your candor and heartfelt emotion to the situation. Best Wishes