Friday, October 17, 2008

Bad Feeling

I had a bad feeling about Killian's disease evalution yesterday. This week he'd pointed out a new lump on his forehead and some growth on his gums. They did the scans and, in fact, both areas are disease progression. There's also new tumor growth in another lymph node in the neck. I asked Phil last night if he believes that having a bad feeling can make something happen. We didn't heaviily explore an answer to that - it was just one of many late night flailing sessions. I remember Han Solo saying, "I have a bad feeling about this" just before Jaba's trash compactor freezes him as space junk. In retrospect, having 'a bad feeling' was not a which-came-first-chicken-or-egg conundrum. It was a comic understatement.

The docs talked about looking into other options: if that's what Killian wants. His initial reaction was exasperation. He said, "nothing is working!" The docs confirmed that nothing is working. I expressed more fear: fear of waiting for another protocol, fear of running out of time. Phil has felt this way too. Killian's reaction to our fear is to remind us that he's most concerned with his quality of life NOW. He was clear that he wanted to look into treatment options, and surgery (for comfort, not cure). Today he was equally clear that he doesn't feel that he wants a treatment that interferes with "having some life" - though he will consider suggestions from his doc, NIH, the Integrative Therapies folk, etc.

In terms of specific options being considered: his doc is researching -- has her ear to the protocol ground for drumbeats. I'll be researching as I can over the weekend too. A couple of tumor sites are sporadically bleeding and we're focused attending to that frustration right now.

Monday, October 13, 2008

Worry Dollhouse

Killian, Cally and I watched Jesus Christ Superstar (the 70's version) this Sat. (Oct. 11). Cally noted repeatedly how "hippie" the cast was. Killian liked the music a lot, but thought the story was not well sussed out. When he found out that the recording preceded the show, it all made sense to him. I can't believe I ever liked the singing the Mary Magdalen actor did in the movie. All that scooping of notes -- yeech!! She was awful. Cally had lots of questions: "... I think I understand -- Judas was Jesus' BFF, right?" We clarified that the focus of this particular musical was Judas. Cally is very focused on BFFs right now. She says that Lucia is her BFF, but Lucia is a couple of years older. I can see that she feels a lack of connection with the peers within her current social circles. I'm sad about this and uncertain what to do. 

Killian's BFF, Kira, has been such an important, healing part of his life... I look back on their exchanges and sometimes only realize in retrospect how profound they are. I was cleaning Killian's room after the last hospitalization and found a Worry Doll house she made for him. When she first gave it to him, I was just thinking it was cute as heck. Last night, Killian was worried about a new lump he's feeling. We hugged for a long time. I suggested that he's been so good about putting worry away and that we won't know anything until Thursday or Friday and to put it where he always puts it. Today, I realize what the dollhouse is all about. When hope is strained, compartmentalization is critical.

Saturday, October 11, 2008

Decrease in Primary Tumor

We see decrease in the primary tumor (jaw) and on Dr. Lee agreed that there is decrease on the ear.  Though the most dramatic decrease is the jaw, they are measuring the ear and cheek, as the those are the sites measuring by the NIH for the base-line CT scan. 

I wonder what it's like for all those other people suffering from Synovial Sarcoma - or any sarcoma for that matter. Most of them don't see their tumors. Even if they do, they appear as some vague swelling. Killian's tumors are so very visible. The only mystery is the cheek. Now that I know they are measuring that site, my "scanxiety" (definition: acute anxiety resulting from cancer imaging done to assess disease progression) is heightened. When I told Killian they were measuring the cheek, he rubbed his fingertips along the cheek looking for tumor sign. He told me, "I can't feel it." 

Monday, October 6, 2008

VEGF-Trap: 2nd Treatment

Killian received his second treatment of this inhibitor Friday, Oct. 3.  The docs seemed fairly sure there would be more pain and there was not. We were thrilled for the peaceful weekend. The docs were fairly negative about Killian's ability to continue to qualify for this trial, and yet we see no disease progression. The tumors appear smaller. I don't know what to think, so at present we are all happy.