Yep, I’m dying

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.

MBC Day 2017

This year has sucked. A lot. Here I am dying, getting radiation treatment on my bran that makes me unable to taste salt and also makes me fatigued, living with pneumonia and whatever the hell is on with my lungs, and tomorrow I get to have a PET scan. Oh, and did I mention I’m having more HLA platelets twice a week? Fun times. The only good news right now is that at the moment, my cognition seems to be a bit better than when I first had my brain bleed last month. I’m OK at writing, but speaking is hard, as is processing questions. I have to ask people to repeat their questions a lot because I have to think hard about what the question is, and focus hard to be able to answer.

But that’s not really what’s important. What’s important is what’s happened to the MBC community this year. I can’t get over the people we’ve lost. Beth Calabotta, Mandi Hudson, Champagne Joy, Kelly CB…so many others. They’re dead. They’re gone. How do we live without them? Why couldn’t science do better by them? Why isn’t there research that might have saved them?

I feel like MBC Day this year, October 13, is a little different in the past. We’re seeing more groups that aren’t doing as much pink crap as in the past, and groups that are talking about MBC and not just how “great” awareness is. But we’re also seeing the government is doing pretty much what it always does: spending way more on early stage research than on metastasis. And all the legislative changes we advocate for, like oral chemo parity and access to Medicare for patients with terminal cancer, are going nowhere.

So, off we go to Capitol Hill we go, to try to convince them to listen to us. We lay on the ground and we remember the people who have died, and we talk about what we need our government to do for us, and we go to their offices and beg them to help save our lives. And what makes me angry is that they don’t. They don’t do shit for us. I mean it, THEY DON’T DO SHIT FOR US. They have all sorts of platitudes for us, but that’s all they are, platitudes. 

When you go to the Stage IV Stampede this year on October 13, and you go lobbying, I want you to remember that Congress owes us their hard work. They owe us their help. And when they give us nothing at your lobbying meetings, remember that we’re going to have to ratchet things up from here on out. Don’t be afraid to speak the truth to them—because, we’re dying. And more of us will die unless they help save our lives. Be brave, and mighty forces will come to your aid.

I’m proud of all of you advocates who will be in DC. I wish I could be there with you, but I know that you will do amazing things this week. My heart will be with you in DC. 

I’m dying

Today we met with #bestdocever and we talked about how I am doing health wise. The reality is this: I am dying. My brain has bled from the mets that are in my brain, and I’m still experiencing problems from those bleeds. We are having them treated with whole brain radiation, which is hopefully killing them, but will know when we are finished with radiation how that went. This course of radiation should be complete in the middle of October. In September I spent several days in the hospital with pneumonia and sepsis from the pneumonia. We had to leverage morphine to combat the cough so that I could get out of the hospital. The X-ray in the hospital showed that 1/3 of my right upper lung was white from pneumonia. I had to take time to recover to try to breath. 2 weeks later, I’ve had another lung x-ray that still didn’t look good. It got better, but now its back. It makes me tired a lot. It’s exhausting walking to the car, the bathroom and I ride around in a wheel chair. I find myself winded a lot. We don’t know if this will get better, but I’m able to get around without coughing too badly. 

 My platelets have remained extremely low, 150k-300k is the normal range. Mine have been as low as 8k and as high as 52k out of the ICU. When my platelets are below 20k, I’m not allowed to have whole brain radiation, so I’m having almost daily infusions of platelets to raise the level high enough to make that bar of 20. Starting this week, I’ll have HLA platelets twice a week that will hopefully do a better job of raising my platelet count and allow continued radiation. If they work, great, if not, I’ll go back to having daily infusions of platelets. My overall blood chemistry has been off for weeks, so I’m not able to have any chemo right now. Chemo goes after fast dividing cells, which hits cancer, but also my bone marrow. Until my bone marrow recovers, my overall blood counts will be off (white blood cells, red blood cells, platelets, etc.).

 When I talk to #bestdocever today, we talked about the amount of time left. He told me that that he thinks I have about 2-4 months with brain radiation and no further treatment. We have discussed Death with Dignity which is an option in our state. I’m grateful to have a doctor who supports what ever I need, whither I choose that to be Death with Dignity or other options. 

 I don’t want to die. I don’t want have the conversation with the children about me dying. I don’t want to have to tell them that Mommy will die soon. I’m in denial. But someday, I’ll have a conversation with them and I have to decide how to make this work. In the mean time, there so much advocacy work I wish I could accomplish; there is so much work that our community needs. When I ask myself “what advocacy to do for our community?” I think about Jenny Grimes, who helped found MetUp with me, and I ask myself “Will this help save Jenny’s life?” If the advocacy will help keep people like Jenny alive, then the advocacy is worth doing. If it won’t help keep people alive, then it isn’t worth doing. 

 I can’t do the work anymore given how sick I am. I hope others in our community will remember that the only important thing they can do as advocates; the thing that is most important, is keeping people alive. I know its not easy, but it HAS TO BE DONE. It has to. I’ll do my best, as time goes on, to talk about the life I’m having to live. I can’t share my story all the time, every day, but I’ll keep doing what I can. I’ll hope that somehow I’ll get better. And if I can’t, I’ll live the life I have as best I can. 

 I’m grateful to all of you for supporting me, and I wish, oh how I wish, things could be different. I love all of you.