So much better

So. much. better.

It’s quarter to three in the morning, and I’m awake. I think my Ativan has worn off. The central line doesn’t hurt as much as it did when I went to bed. I’m feeling so much more peaceful. And I feel like it’s going to be okay.

If I can find a tactful way to do it, I’m going to offer to re-write the packet Robin sent me. It’s written as if being here at all is contingent on one treatment working in the first two tries. That isn’t so.

We had a three-hour consultation yesterday. First one of the nurses, then Dr. Gailani, then the pharmacist and then the social worker. Dr. Gailani gave us better odds—still not great, but better. And explained to us how it really works: they’re starting me on biochemotherapy (interleukin, interferon, three chemo drugs that I remember). I’ll do that now and after the second week home, I’ll do it again. Three weeks after that, I’ll have a PET to see if my body is responding. If it is, we keep at it, every fourth week. If not, we go to high-dose IL-2. I’ll try that twice (same schedule). If that works, we keep at it. If that doesn’t work either, we start me on trials.

The odds aren’t great for anything—but they’re better than the information we had. And there is always something else in the toolbox.

Dr. G was great. He asked what I know about metastatic melanoma. I said, I’m sure you could tell me something I don’t know. He was sure he could (the man is famous in this field), but started at the beginning, and gave me whatever information I could assimilate. He told me where the disease is in me: lungs, lymph nodes between the lungs, muscle in that area (which likely explains the chest pains I’ve been having; they don’t feel cardiac). Bones, and subcutaneous tissue. We’re going to do an MRI to rule out brain mets—but I don’t have any symptoms of those.

He said if we could put me in full remission, great—if we keep me as asymptomatic as possible, that’s success too. Median survival rates don’t relate to individuals. We don’t know where I’ll be, until we pull out the toolbox and see what works on me.

We’re looking at anywhere between 6 months and a year and a half of treatment. Which means, there are options until there won’t be anymore. He will tell us when and if it’s time to stop and let me live fully whatever time I still have.

I’m getting tired and want more rest. I’ll write later about the amazing people of St. George’s.