Thursday, April 7, 2016


Greetings from my hospital room at NIH.  I've been placed (temporarily, I hope) at the lymphoma wing, due to lack of available beds on the immunotherapy ward.

It's lonely over here.

Today, I am scheduled for surgery.  I met the thoracic surgeon yesterday, and we discussed the very real possibility that he will remove the entire lower left lobe of my lung.  Regardless of  how much he ends up taking, I'm guaranteed to wake up with a chest tube.  I am sort of dreading that (not the waking up part, haha).

I'm "in my head" this visit, and not adequately equipped to articulate my thoughts.  I am relying on the knowledge and belief that Grace is given in time and measure according to my need of it.  I am working on re-framing this episode as one of restoring health, rather than focusing on what needs to happen to get there.

I had a visit from the Lab Guru on my first night here.  That was a most-welcome surprise.  He told me that he found four different T cell receptors (TCRs) in my blood that all react to KRAS G12D.  I had heard previously that it was three types, which was pretty stunning.  Four seems even better.  He explained how the fourth one is "very particular" about what it recognizes, and I just sat there listening in utter wonder at how cleverly our immune systems were designed.  He also said that the cells are persisting at a relatively high level, even seven months out, which he thinks is a good sign.  That was the good news.

The bad news is that, since I do have a tumor that is now growing, my case can no longer be described as "Partial Response".  Instead, I've moved to the ultra-depressing category of "Progressive Disease".  It does not change the fact that six of seven tumors have responded (and continue to do so), however, so I need to "get over" the whole labeling thing.  I was never a fan of RECIST criteria, but it's the tool the oncology world uses, so I'm stuck with it.

Today I will have surgery.

I hear, outside my door, the sounds of the Medical Oncology ward waking up:  voices, wheeled carts bumping through the hallway, and doors opening and closing.

I hope that when I awake from surgery, I'll be greeted with the news that I won't be returning to this room, or this wing. My fellow assured me that "they" are doing what they can. He joked that it is "far too long a walk" for him to make in order to do his rounds. "Yeah, we've gotta get you back where you belong," he said.

I couldn't agree more.

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