Monday, January 13, 2014

Have you ever carried at lantern through the dark? As you carry them they push the dark back and create a circle of light around you as you move on your way.  The thing about that circle of illumination is that it small and beyond it, the darkness is absolute. Stand outside my small circle and I may feel your presence, but I cannot see you. Lanterns are handy things to have in the dark, and yet, I cannot help but sometimes feel, as I carry a lantern, that sinister things lurk just beyond its glow waiting for my light or steps to falter so that they may close in on me...

Well, I didn't get my two Mayo free months. Instead, yesterday I met with a couple of doctors from the Individualized Medicine team at Mayo and with a surgeon to discuss my next plan of action. The plan is not so much of a treatment plan as it is looking for information to guide decisions about treatment. This whole process seems complicated and has some twist and bends to it, so let me see if I can simplify it a little.

This coming Friday I will be having a surgery to attempt to remove at least one, but more ideally two, of my lung tumors. The surgeon is hoping to accomplish this using a scope and about three small incisions. However, most of my tumors are not very close to the surface of my lungs so there is a chance the surgery could turn into a more open one. Once they have some viable tumor samples the plan is to run a number of tests on them. Which or how many of the tests will actually get run is largely dependent on what our insurance is willing to pay. (One of these tests has a $15,000 price tag on it. If insurance won't pay it, it's not getting done unless I find a money tree in full bloom... and it's winter.) These tests are looking to, on differing scales and ways, analyze the tumor's DNA and look to match a treatment to it. That is way over simplified, but in the end it comes down to trying to find a treatment with a super good chance of working.

What are the odds? Not great. There's a greater chance that the tumor DNA is going to bury its secrets and tell us nothing at all. But the chance that we will find some answers is still large enough that it is worth a shot. And, as you should know by now, I am a huge believer in the Han Solo philosophy of "Never tell me the odds!"

But, aside from all the potential benefit that this Individualized Medicine approach might hold for me, there is another component, or facet, that was only hinted at and alluded to. One that seems almost more weighty and important than my individual outcome. Once again, in the world of cholangiocarcinoma, I am heading off into uncharted territory and my outcomes may help shape future treatments for others with this same disease. That's an important thing to me. It helps, a little, to know that what I am going through now may help someone else later and save them from a similar ordeal.

...So I take up my lantern and head out into the unknown again. I am happy and proud in some ways to carry this lantern. I can feel the presence and hopes of others behind me, watching and waiting to see where I lead. But carrying the lantern can be frightening and wearisome too. There are times when my light falters and the sinister presences draw closer, and I am afraid. I will, however, press onward as long as there is a lantern that needs carrying and I have strength enough to lift it.

I do not know what to expect from this surgery or from these tests. I have great hopes but I also have fears. It is sometimes difficult to carry the lantern, but as long as there is darkness that needs illuminating I will plod forward, even on the rainiest days.

Part of a beautiful illustration by Jane Dyer from one of my most favorite children's books, Child of Faerie, Child of Earth, written by Jane Yolen