I know nobody wants this to be true, but folks, I really actually am dying. Let’s talk about what’s going on.
Today we met with Dr. Marzbani, aka #bestdocever. I wore this shirt.
Because not only is my homeboy, but he’s just an awesome doc. Everyone loves him. Last week when I went for an HLA platelet infusion, the woman in the next bed was his patient and her daughter told the nurses that her mama thinks he’s dreamy. It happens a lot. To me, he’s the little brother I never had and I’m like “WHO IS HITTING ON MY LITTLE BROTHER oh it’s just one of the old ladies, that’s sweet.”
So. The appointment today was about looking at my PET scan from late last week, and here’s the shit it showed:
1. My liver is chockablock full of cancer. I mean chockablock. It’s kinda cool how you can see my whole liver because it’s so lit up.
2. My lung has a nice sized tumor in it that’s causing parts of my lung to collapse. Which is why I’m constantly winded. How fun!
3. Lovely lovely bone mets in my spine, as well as in my leg that causes pain if we don’t stay ahead of it with meds.
4. There’s all sorts of shit listed on the report. I haven’t even red it all. I’m just basically really cancery, that shit is all over the place.
Meanwhile, my white blood count is really low, and my platelets can’t seem to stay up. The HLA platelets help for a bit and then back down they go, so I have to have them all the damn time.
When I told you guys I was dying? I really meant it. We still think we’re in the 2-4 month life span. We could try some chemo if my blood counts get better, like, eribulin or gemcitamine or some other crap, but it’s make me feel more like shit. I have 2-4 months to live and zero intention to poison myself and feel like chemo shit. I mean, seriously, would YOU want to give yourself drugs that make you feel like shit and then die? I doubt it.
#bestdocever’s advice was to enjoy life as much as I can, and drink bourbon because it makes me happy. And that’s what I intend to do. We’ll be finding a lovely hospice service, and I’ll probably talk to a guy who just does palliative care on lungs, like, procedures that don’t cure, but they make the living with the cancer in there easer. Which sounds good, amiright? And dude, just as soon as my sense of taste of salt comes back (thanks whole brain radiation!) I’m going to eat SO MUCH SHIT. Bacon cheeseburgers, with blue cheese. Nachos. Everything with salt in it. Everything.
I know a lot of you were hoping there’d be some miracle out of this PET, and this is not easy news to take in. Watching your friends die is AWFUL. I’ve watched so many friends die, and it’s never been remotely OK. And now, y’all have to watch me die. But, that’s life. It’s shorter than it should be, and it comes with horrible things—pain, fatigue, wheezing, inability to walk more than 20 feet…but you know what? For now, I’m alive. I get to watch my bathroom getting remodeled. I get to watch my kids dress up in costumes. I get to watch them play with our new dog (her name is Nova and she’s perfect). This is the life I have, and I’m going to enjoy it.
I won’t be able to answer a lot of messages y’all send, and it’s not because I don’t love you all and appreciate the love you show me. It’s just the reality of my world now—it’s smaller than it was before the cancer grew so much. I’m OK with that. I’ve come to terms with what’s happening to me, that my end is coming, and that I can’t be what I’ve been to all of you. I hope eventually you’ll be OK with that, or not OK really, that’s the wrong word. What I mean is, I hope you’ll be able to take how you feel about me and my death, and put those feelings into action. A good friend of mine told me yesterday that she promised to stand up for the MBC community no matter when, and that is such perfection. I made the same promise to Carolyn Frayn, and she said the same thing to me. We can be so much for each other, and every promise to speak for us is a beautiful thing, a loving thing. I’m grateful for every promise like that.
#bestdocever has promised to come over and have some beer, because that’s what good friends do. He’s not the only one—other close friends will come over and play Cards Against Humanity and get shitfaced, and it will make me so glad. That’s the nicest thing people can do for me, just be awesome and come have fun and be happy and make me happy. Remember that as your other friends are dying too. And know that there will always be enough love in the world, and we love you too.