Optimistic update

I was too tired to fill people in last night. My oncologist here (whom A and I call "Dr. GoodGuy" to distinguish him from his colleague Dr. Evil who endangered me) examined me, listened to how I said I was feeling ("hmmm, I'm so vague about my body right now, but I don't think I feel sick"), asked me if the surgeon got it all. He said he thought it would turn out to be just this one site. Ordered a PET to make sure. (I'll call radiology and schedule that Monday, if they don't call me first.) Ordered a blood test. Gave me a scrip for Xanax. Referred me to an oncologist in Sac whom he trusts, both for second opinion/more information and for follow-up care. (Dr. GoodGuy is going on vacation from the 8th until July. His department consists of three doctors--him, Dr. Evil, and one other whom I don't know.) Made a follow-up appointment (or suggested I do that? I don't remember) with himself six weeks from now, in case I still want to discuss things with him or if I need treatment that makes more sense to do here. Told me that if it turns out to have been just this one site, my choices are to do nothing (NOT happening) or to join a clinical trial--and there are lots of those.

He takes for ever, but he listens. And he had no problem going back and explaining something I didn't understand, including how he didn't understand it either. Random bits of what I may be misunderstanding/misremembering: Metastasis in one site is stage IV but acts like stage I. It's way better to have it in one site than in more of them. If we've gotten it, we don't have to do anything right now but there are trials to join if I want to. (Again, I want to.) This could be from my tumor two years ago (bad) or a new mutation (less bad). There's a test to find out. Results of that test don't really make a difference in treatment, if it's only the one site. I can ask all my questions again to Dr. Sacramento, because I'm only understanding in bits.

Basically, if we've gotten it that's really good news, and I can go back to my life.

I won't do normal chemotherapy now; I'll sign up for whichever trial is appropriate. At this stage if there are multiple sites, there is one chemotherapy they use. It's miserable and the results are mostly palliative. There is an immunotherapy that works wonders, Interleukin-2--if you're in the small percentage of people whom it works for. (The interferon I took for a year was also an immunotherapy. I called it chemo because my friends were familiar with that term: something you put into your body that fights cancer and also makes you miserable.) A friend whom I think is an oncology nurse (she works for a hospital system in Sac) sent me a link to this newsletter. I listened to the podcast detailing melanoma treatment strategies. Apparently according to those doctors, the standard of care is a clinical trial. That's where we're at with treatments we can stand on--there aren't any.

Where am I? Guardedly hopeful. The blood test came back normal, which is a really good sign. My consultation in Sac is scheduled for Monday the 14th. I'll have my PET before then, with enough time so that Dr. Sacramento will have the results. I'm kind of waiting to breathe until that's clean.

I got really dire news on Wednesday: a path report came back "consistent with metastatic melanoma." I went immediately into warrior mode: fight for your life; all you know is that everything matters. And then yesterday, a reprieve. A. hadn't really eaten for two days. She was so relieved that she got hungry while Dr. GoodGuy was still talking. I told her, I think I'm more guarded because it's my body. My body clearly makes this crap. We caught this one. There will likely be others in my lifetime. I'm going to always have to make sure I have health insurance. I'm going to always have to be vigilant. But I can stop thinking of life in five-year blocks now; the chances just got higher that I'll be alive at the end of this one.

This is going to sound really weird. I don't want to have metastatic cancer floating around in me, obviously. And no rational soul wants to need chemotherapy. But I almost do want something to show up in my PET--because I want to see my body cooperate with the tools they'd give me to kill it. I feel like, well crap, interferon didn't work. I want to see with my own eyes that something does.

I need to do some physical activity that honors my body. A. and I were talking about Tai Chi. Neither of us knows anything about it. But yoga never stuck with me, and I want to do something just to get rid of the mentality that my body lets these tumors in.

Get back to my life. What does that really mean? It means, do the things I love. Keep the worry about cancer only in the back of my mind: maybe as a simple reminder that life counts, but don't obsess over it. It means, I had a recurrence of the thing that might ultimately, on some unknown date in the future, kill me. Live like I know I've only got now, because that is the truth. I could be blindsided by tumors at any point in time.

It also means, fix the things I think I'm doing wrong. Throw myself in where I've only gotten my toes wet. Face the things in my everyday that scare me--things like finding a way to make a living doing homeless chaplaincy. Organize my time so that I get the projects I want to do, done. I don't know why that is harder, but it is. Maybe that will be easier now, because I've had this reminder that only now exists.

I'm falling back to sleep. I must have come to peace with something.