Bone

Yep, I’m dying

Posted on by Beth Caldwell

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.

And another cliff. Kind of.

Posted on by Beth Caldwell

So, here I am again, at the base of yet another cliff. Except, this one doesn’t even feel like a cliff to me. It feels like I just took a step down, like, I don’t even feel like I’ve scraped my knee this time. 

Remember how I said last week that my doctor and I both suspected I was having progression? Turns out we’re both very smart, because indeed, I have some liver mets now. The largest one is 1.5 cm, and I’m having it biopsied this week to confirm it’s indeed cancer, and if so, what flavor. Let me take you in the way-back machine to last spring, when I first got diagnosed, because this will help you understand what we hope to learn from the biopsy.

So, when I first had the biopsy of my breast tumor, the pathology lab at the community hospital where I go for care decided it’s neuroendocrine breast cancer. NBC is extremely rare, like, 20 US cases per year. Not 20 mets cases, 20 total cases. Like, really extremely fucking rare. Neuroendcrine cancer in general isn’t super common, but when it happens, it usually starts in your digestive tract or your lungs, not your breast. NBC tends to be a bit more aggressive than regular breast cancer. 

My doc sent the tissue sample to a second lab, who came back with a different diagnosis, based on the exact same sample: invasive ductal carcinoma with neuroendocrine features. How these two diagnoses differ, I’m not really sure; I think it has to do with how neuroendocrine-y the sample is? But the path lab at the community hospital was like “NO! IT’S NEUROENDOCRINE! I’LL FIGHT YOU!” That is to say, they felt strongly that they were right. My doc decided to treat both the neuroendocrine aspects, and also the breast cancer aspects, by choosing chemo drugs that would work on both. And I had a pretty good response to those drugs. My breast tumor shrank such that when the mastectomy happened, it was just scattered cancer cells in a field of scar tissue, instead of a 7 cm tumor. And the hip and sternum tumors were no longer cancerous.

The thing the two pathology labs agreed on was that my cancer was estrogen-receptor and progesterone-receptor positive, and HER2-negative. Some breast cancers are positive for all three; some are positive for just one or two of those; and some we call triple-negative, because they’re negative for all three. Now, ER+ cancers like mine should respond to what we call endocrine therapy: drugs that strip the estrogen out of your body and prevent any estrogen that’s left from attaching to your cancer cells. Unfortunately, because we’re seeing all these new tumors, we know that my cancer isn’t responding to these drugs. 

So, what we want to know now is, is my cancer no longer ER/PR+? Cancers can and do evolve, the way bacteria do, and that means they do sometimes become triple-negative over time, the way bacteria become resistant to antibiotics, Knowing I have triple-negative disease will impact my treatment plan, and which clinical trials I’d qualify for. In addition, I’d like another couple sets of eyes on my sample to see if we can figure out if it really is neuroendocrine breast cancer, or not. 

And finally, we’re also going to send a sample for genomic testing. You’ve probably seen this on the news or in several recent documentaries–the idea is, we’d take a look at my specific cancer and see what kind of mutations it has. Sometimes drugs designed for other cancers will work on breast cancers that have specific mutations, so it could open up the possibility of using some other drugs on my cancer. We’re also going to get serious about clinical trials now. My doctor says he’s going to put my name on lists for any trial he thinks might help, and having my cancer sequenced could help with that.

What this also means is, I’ll be going back into chemo starting next week. I made my oncologist promise he wouldn’t screw up my book signings (I actually threatened to punch him in the nuts if he did), so y’all better be there on May 4 at Sole Repair on Capitol Hill in Seattle! Get your tickets at this link. I start chemo on May 5, but my oncologist assures me that it won’t screw up the big event at MamaCon, where you’ll get to see me, Rebecca Gallagher, Tracy DeBlois, and Michelle Back on May 15, and there will be free booze. Did I say free booze? DARN TOOTIN I DID. Get your tickets at this link.

In addition to the whole liver mets thing, we’re being proactive on those brain mets and I’m having gamma knife surgery today. I’ll write about what it’s like, and maybe share some photos, in the coming days. As my regular readers know, I usually write twice a week, but with all this treatment going on, I’ll probably be dropping down to once a week instead, but I’m committed to continuing to share my life with you guys. Because, despite everything cancer has taken from me, it hasn’t taken my fundamental need to overshare. So, you all should mentally prepare yourselves for side effect stories in the weeks to come. You’d better hope none of them involve anal burning!