Beth Caldwell has passed.
Fucking Cancer
Hospice
This is The Hubs. Beth is not doing well. This was the last post that she was struggling with the last couple of days. She is not doing well and it will be soon, likely in the next couple of days that she passes if not sooner. Note: The post referse to the Death with Dignity laws here. She spiraled too quickly, so that is no longer an option.
On Friday, as we were headed for some more HLA platelets, #bestdocever sent The Hubs and me a text explaining that the lung doc doesn’t think that a stint will work on my lung. And we knew. We knew this meant that there was nothing more that could be done for me. I texted him back and asked if the platelets were going to make me feel any better, and he said “nah.” And I said “Then I won’t be going to the influsions anymore.” And he was like “Cool.”
The Hubs and I went home and cried. A lot. It felt like when we found out that I had stage IV cancer–we went home and climbed in bed and cried and faced my death. It was the first time time I’d seen The Hubs having to deal with the reality of my terminal diagnosis, and now, he had to deal with the reality of my mortality, again. And now we wait for my death because I am in hospice.
I am in hospice.
I am in hospice. This means that some folks from the hospice drop off O2, a machine that makes O2 out of the air, some other things (like a cool table); a nurse will check on me sometime; someone might help The Hubs with some care for me occasionally. But there is nothing that they can do to extend my life at this point. There’s no chance of survival. That’s always been been true, but it’s in our faces now. I honestly don’t know what to say. The thing about trees is that they don’t live forever. All of my trees who I love so much, with all of my heart, are going to die of metastatic cancer, just like me.
Here’s how it will happen: The Hubs will go with me to talk to #bestdocever on Tuesday. We’ll discuss with them the Death with Dignity prescription (we have compleated all the paperwork), and he will write the prescription I’ll need for Death with Dignity. In the mean time, before I take the pills, I’ll say these are the people that I want to speak to before I die. We have a list. After we get the prescription The Hubs will drive to a pharmacy on Lake Washington, where he will get the pills I need. It won’t take long to get it.
After we get the prescription, we will see the people that we want to see–family, friends–and then, we will see how I feel. If I have no quality of life, I believe I’ll opt for the pills. If I don’t want to, or just want to let things take its course, I will. I’m really glad I live in a state that has Death with Dignity as an option. It’s something that should be the right of each person. Maybe you all disagree with me–that’s OK. I know some people don’t agree and that’s why they don’t have that right in their state.
I’m going to miss all of you. ALL of you.
Can’t breathe
It’s weird not being able to breathe. I mean, I CAN breathe, but if I have to move around move at all, then I can’t breathe. Like, going to the bathroom to go pee, which is a few feet from my bed, leaves me completely out of breath. It basically sucks. We’re working on getting what appears to be a shitty company called Quest to get me some oxygen at home but because they’re taking for-fucking-ever to get around to it, I’m borrowing a tank from #bestdocever’s office. Having an oxygen tank helps a TON.
On Monday, I had my HLA platelets. Over the weekend, they’d dropped to 20K. After the infusion, they’d gone up to the 40s. Whopdiedoo. Oh, and it turned out that my hematocrit was 19, which is also fucking low. So, I had a transfusion, 2 bags of blood. I haven’t seen the results after the transfusion, so I’m not sure how much the transfusion helped. Last time, it raised my hematocrit from 20 into the 30’s, so let’s hope we see a similar result.
This whole thing sucks. It just does. It sucks that I can’t breathe. It sucks that not being able to breathe keeps me in bed, It sucks that the progress that I’d made cognitively is now sliding backwards because I’m so tired, my brain isn’t functioning right. It sucks that I slept all day at the hospital during my transfusion. It sucks seeing the terror in J’s eyes every time I gasp for air. It just fucking sucks.
Today we’re hoping to have an answer about what to do about my goddamn lung—maybe a stent in there to open up my lung a bit, so I can breathe more? Maybe something else?
This disease fucking sucks.
UPDATE: As of 12:30PM today, I have an oxygen compressor, as well as some portable bottles to take to doctor appointments. Yay!!! Holy cow, does oxygen make me feel better. More human, my brain actually functioning, not coughing so much…it’s seriously the bomb. O2, I love you.
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.
Tree Love
You may have seen me post on Twitter or Facebook with some emojis like this, and wondered “Um, what’s that about?”
🌲❤️🌳❤️🌴❤️
Good question! So, I sometimes talk about getting diagnosed with metastatic cancer as being like falling off a cliff and landing in a new land, and you lay there in pain for a bit, and then you get up and look around and say, as Wesley did in the fire swamp in The Princess Bride, “I mean I wouldn’t want to build a summer home here, but the trees are actually quite lovely.” And my metastatic friends? You’re the trees. You’re lovely, and you make being in this awful place bearable.
And so, I send you tree love with my dorky tree emojis, because I am so grateful for all of you. I wish that none of you had to live at the base of this cliff with me, but since we have to be here, I’m glad we can be each other’s lovely trees, and make this place a little more beautiful.
Blocking and Unblocking the Sun
Since being diagnosed with terminal cancer, I have had one goal: to live long enough to see The Girl start kindergarten. She was 2 and a half when I got diagnosed back in March of 2014, and starting kindergarten in 2017 would fall past median survival for me. Thinking about her having to start school without her mother brought me to my knees every time I thought about it. It’s the thing that would bring me to tears, that would break my heart–it was my biggest fear, by far.
Today, The Girl went to her first day of our district’s Kindergarten Jumpstart. It’s a week-long program for kids entering kindergarten, a couple of weeks before the official start of school, where the kids get to meet the kindergarten teachers and some of the other school staff, and learn the layout of the building, and meet the other kids, and just start to get a sense of what elementary school is all about. No, today isn’t the official first day of kindergarten for The Girl, but it’s close enough.
And I’m here. I’m alive. My recent MRI testing showed no signs of leptomeningeal mets. I’m still dying slowly, but I’m no longer staring hospice in the face, and The Girl has started kindergarten. This is the day I have dreamed of for three and a half years, and it’s here. It’s here.
How did the first day of kindergarten go, you ask? Perfectly normally. The Girl was excited and nervous at the same time, and was scared when it was time for Mom and Dad and The Boy to say goodbye at drop-off, but she powered through with the promise of ice cream after school was done. I’m guessing millions of other families had a really similar first day of kindergarten experience today. Being normal when your life is anything BUT normal is pretty amazing.
I like to think of myself as a pretty good writer, but I have absolutely no idea how to describe this feeling. I mean, none. Maybe because it’s not just one feeling–it seems to be a collection of relief and pure joy and PTSD and reliving all the awfulness of the last 3 years and pride in my big little girl and holy hell, just everything, all at once. It seems fitting that today would be a day of a solar eclipse, a time where the sky makes us stop and take in the amazing wonders of our world, to experience darkness and lightness at the same time.
#BestDocEver says I need a new goal, and he’s right. I don’t know for sure what it’ll be–I would love to be the mom of a teenager, which is almost 3 years away. I’m not sure my heart can take 3 more years of the kind of hope and terror I’ve been living with…but I’m not sure I can muster the strength it takes to keep living the metastatic life without that combination of hope and terror. The time I spent believing that I had lepto mets and only had a few months to live, I lost all will to do anything. I didn’t even care about advocacy work. The depression of that hopelessness was pretty intense, and obviously wasn’t good for me. So, maybe looking towards parenting a teen isn’t a bad goal?
Progression
It’s been a hell of a few weeks here in cancer land. A hell of a few weeks.
As you may remember, I had gamma knife to my brain metastases back in May, and I also had radiation to a spot in my lung and a bone met in my shoulder. Then I went on Keytruda and Yervoy, a pair of immunotherapy drugs, in hopes that they’d shrink my cancer. I did two cycles of the immunotherapy drugs, and then some not awesome shit happened.
I’ve been having a lot of coughing fits, despite the radiation we did to my lung to try to shrink the tumor there. Sometimes I cough so hard, I throw up. One night at bedtime, I had a particularly bad coughing fit, threw up, and then came back to bed to lay down. The next thing I remember, I was in an ambulance. Apparently, I had a pretty major seizure that went on for about 5 minutes. My husband was there for the whole thing and made sure I was OK, called 911, and had someone come over to watch the kids so he could come with me to the hospital.
I spent the next couple of nights in the hospital, and had some testing done. I had a brain MRI, and it showed what may be leptomeningeal metastasis. Lepto mets are in the fluid around the brain, and the prognosis for them is not good–we’re talking a couple of months. Two dear friends of mine died of lepto mets last spring. Standard treatment for lepto mets is to put in an ommaya, which is basically a port into your head so that chemo can be put directly into the cerebrospinal fluid to try to kill any cancer cells in there. And, wholebrain radiation is also often part of lepto treatment. These tend to buy a bit of time, but not much, and come with impacts to quality of life, including fatigue, nausea, cognitive impairments…so, yeah, treatment for lepto isn’t awesome.
I have no interest in an ommaya. If I only have a few months to live, I don’t want to spend them hooked up to IV chemo that makes me feel like shit. So, I had a talk with #bestdocever, and we talked about me probably entering hospice. There were lots of tears. On the way home, I told The Hubs that I want to take the kids to Disneyworld, and we started making plans.
The next day, I was laying in bed watching the news and I had the most intense deja vu of my life. It was as though I’d heard every word the people on TV were saying. I called for The Hubs and tried to explain what was going on, but wasn’t able to speak clearly. And then, the next thing I remember is being wheeled out of the ambulance at the hospital. Apparently I had another long seizure, this time about 4 minutes. I spent another night in the hospital and had a spinal tap to test my CNS fluid for lepto mets. I also had fluid drained from around my lung to help with the cough.
Then there’s the part where things start to get weird: the spinal tap came back negative for lepto mets. Negative. Whut? I’m not within months of dying? WTF? We’re having a second lab take a look at it, but it’s possible that the seizures aren’t being caused by lepto mets, and are just from a regular brain met bleeding. I’m going to have a spinal MRI to look at the spinal fluid and see what we see, but if the second lab comes back with no lepto mets, and the spinal MRI doesn’t show any signs of lepto mets, then holy hell, I’m not going to do hospice after all. I’m going to do treatment.
What we’d be looking at is whole brain radiation, and xeloda with temozolomide. I’m expecting pretty serious fatigue and some nausea, but also for treatment to buy me a lot more time than it would with lepto mets. Whole brain radiation may also come with cognitive decline, and that’s something I doubt I’d choose if I didn’t have two young children who desperately need more time with their mother.
The other thing that’s going on lately is bone met pain. I’ve got a bone met in my sacrum and one in my left hip, and they hurt. A lot. I wake up every morning in pain, and it takes time for my pain meds to kick in so I can be functional at all. The pain meds make me a bit loopy too, which isn’t awesome. I’m also on cough medicine to help keep me from having such horrible coughing fits, in case that’s contributing to the seizures. And, I’m also on anti-seizure medicine, and hoping that’ll keep me from having any more seizures.
As you can imagine, going from “you have only a brief time to live and you’re entering hospice” to “you’re going to have a bunch of treatment that will come with lots of side effects but buy you a decent amount of time” has been quite the mind fuck, not just for me but for everyone in my world. The Hubs is going from FMLA leave back to working full time, but also worrying about whether I’ll have a seizure while he’s at work. I’m giving up a lot of the advocacy work I had planned for the fall, including a trip to Lisbon for an advanced breast cancer conference. My time now is really going to have to be focused on the physical fight against my cancer, and making memories with the family. I’ll do advocacy work when I can, but it won’t be as much as I’d like to be doing. Cancer just isn’t going to let that happen.
And, it’s still entirely possible that there’s lepto mets going on in there, and the next round of testing will show that. If that’s the case, I’ll be back to thinking about hospice. Hopefully we’ll know more in a the next week or so.
Anyway, that’s what’s been going on in my fucked up world lately. I’ll do my best to keep you posted, but if you don’t hear from me as often as you’d like, I hope you’ll be patient. This is a really difficult time for me and my family, and I’m so grateful for all the love everyone has shown us over the last few weeks.
Immunotherapy!
Hi all! It’s been a bit since I last updated on my health, so I thought I’d share what’s going on. I’m currently sitting in a infusion chair at my oncologist’s office because today is my first day on my new treatment: Keytruda and Yervoy. If this post suddenly turns weird like I’ve lost neurological function, somebody buzz the nurse for me, will you?
As you may have seen on Twitter, I had gamma knife on my brain last month, because I’ve got a zillion tiny mets in there. OK, not a zillion, but like, 50? Now, most doctors would do whole brain radiation with that many brain mets, but I flat out refuse to do WBR unless it’s an absolute last resort. I don’t have any symptoms from my tiny mets, and WBR can cause cognitive issues. So fuck that, we’re saving that for when I really need it. Instead, we zapped 26 of those little fuckers in my brain, the ones that were growing and/or were likely to cause symptoms if they grew. It went fine, although now I have a couple bald spots from the mets that were close to the surface. Right now my hair is curly so it hides the bald spots.
Then I had 5 days of traditional radiation on my lung met (actually a cluster of lymph nodes in there rather than the lung tissue itself) that’s given me a chronic cough, as well as the met in my humerus. It’s at the very top of my humerus and it was causing a bunch of pain. 5 days was short enough that I didn’t have skin problems from the radiation, though fatigue has been a challenge. Then again, when isn’t fatigue a challenge for me?
And, now I start on Keytruda/Yervoy! Immunotherapy is supposed to work even better after you’ve had radiation, and Keytruda’s the drug that cleared Jimmy Carter’s brain mets, so I’m really hopeful it’ll work as well for me. Often immunotherapy drugs like Keytruda and Yervoy don’t work great on breast cancer because it tends to be less immunogenic. In fact, there was some pretty disappointing data out of ASCO this year on Keytruda in triple negative breast cancer. But we all know my cancer doesn’t work regular breast cancer, because it’s neuroendocrine breast cancer. And, cancers with big mutational burdens like mine tend to respond better to immunotherapy than those with low mutational burdens. I read a study recently about a woman with metastatic neuroendocrine ovarian cancer, and radiation plus Keytruda got her to NED in 4 months, and kept her NED even after she went off Keytruda due to side effects. I desperately want that to be me.
Getting the drugs was an administrative headache, of course. Since neither drug is approved for breast cancer, I had to go through the patient assistance process again. Merck’s process was super easy and fast and we had approval for Keytruda pretty quick. With Bristol Meyers Squibb, there were some paperwork headaches, plus a complication created by insurance. So, my insurance doesn’t require preauthorization for Yervoy, which means they’d pay for it–BUT. Because I’d be getting it off label, it’s entirely possible they’d come back later and try to get their money out of me. And I can think of a lot of things I’d rather spend $55,000 on than Yervoy. Like two years of my mortgage payments. But, the financial person at my oncologist’s office is tough and smart and she handled getting my insurance to realize they didn’t want to pay for off-label drugs, which got BMS to give me the drug for free.
So, that’s where I’m at. Everyone keep you fingers crossed that I’m one of the lucky ones who responds to immunotherapy. And, as always, I’m so grateful for all the support I get from all of you! Your words really mean a lot to me.