Can we please stop playing Good News/Bad News? Like, could I someday get Good News/Good News?
Oncology visit was Thursday, as you all know. My oncologist, who is as passionate and excitable as Peter (i.e., NOT!), very kindly cut right to the chase. As he said, the PET scan looked “pretty bad.” I was not the least bit surprised. Stuff that was there before has grown and there is a whole bunch of other new stuff, all in generally abdomen-related areas (with the exception of some new stuff in my lungs). He gave me the specifics and numbers, but I don’t remember it all, so generalities will be what you get. Tl;dr: Lots of cancer.
GOOD NEWS (because we really need it right fucking now): I *am* BRAF positive, which is great, so I should start the BRAF pills sometimes next week, hopefully earlier than later. I’m taking a combo that has a 60% response rate and should start working pretty quickly (not sure exactly how fast). If I start feeling worse, then we will stop BRAF and move on down the list. So the other bit of good news is that we literally have only done the VERY FIRST TREATMENT on the list, and the current “golden child” would be available if BRAF pills don’t work.
My oncologist is being very aggressive, so that’s good, and now we just have to find the magic bullet quickly enough.
Emotionally, I think I’m doing about as well as a human could be. Sometimes I cry, sometimes I’m OK. I’m trying to stop all the negative thoughts that come so easily because so many of these drugs have really miraculous responses for people. Negative thinking will do me no good right now. Yes, I need to prepare things for the future, but wouldn’t Emmie love a recording of my voice singing lullabies no matter what?
Physically, I’m very grateful for the morphine. It’s still basically keeping things under control, which is good. If I have a big meal or if I get too stopped up (for lack of a more delicate term), the pain tends to increase. I’m trying not to read too much into daily fluctuations in pain, though I am noticing that I am having a little bit more breakthrough pain lately.
We are having a big potluck-open house at our place next weekend. If you don’t know me and I am an internet stranger, feel free to leave a message here to participate virtually. If you know me in real life and would like to come, send me an email and I can give you the details.
I am so glad this is the Christmas season. I am finding so much joy and comfort in the metaphors of the season (and I am also finding a lot of comfort in going back to Church). We don’t need to despair because there is a light in the darkness. (I’m not trying to proselytize, just paraphrasing the metaphors that have been helpful for me). I really found comfort in one of the readings about being prepared at all hours, because we don’t know when He is coming. I did not take this as a Second Coming kind of thing, but as a reassurance that even if I may “feel” that I might not have long for this world, I truly do not know that, and I must completely submit to God’s will.
As a kid/teen/young adult, this concept would have pissed me off because I wanted to control my destiny. But I think that all of the world’s religions and philosophies (or at least the good ones, NOT you, Ayn Rand), tell us that true contentment/joy/enlightenment/nirvana, or what have you, they can only come when you recognize that we can control tiny bits of our lives, but the really big stuff is generally out of our hands. If you fight this, you cannot be happy because this will never change. If you can learn to accept life as it comes, and then make some kind of meaning out of whatever sorrow or pain life hands you… then you are getting somewhere. (Hint: the meaning you make out of life will not have anything to do with owning more stuff, working more hours, or having more money).
Don’t delay joy. Seize every scrap of happiness you can. Gather your loved ones close, and release your anger against enemies.
We got this, you guys. I’m so excited to start the BRAF and start the cancer smackdown.