The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22

Proem

Health Hats: My friends and cronies, a quiet Mighty Mouth, Casey Quinlan H.U.M.A.N.🌟 , is deafening. We’ll need some time to get used to it. Meanwhile, let’s watch and listen to clips from four podcast episodes Casey, my dear friend, supporter and ruckus-making partner and I jointly published when one or both of us felt like crap, but had enough energy between us to share something with our loyal followers. Brace yourselves for some bittersweet moments. I needed a hankie while producing.

Healthcare is Hilarious intro

Mighty Casey: Hey, hey, hey, ladies, gents, and gender-fluid friends. It’s time again for Healthcare is Hilarious. Yes, it’s me, Casey Quinlan, Mighty Casey on the Interwebs with another snark-filled hot take on healthcare. Let’s make fun of the ridiculous, give credit to the awesome working, always to make you laugh and think at the same time.

Health Hats, the Podcast intro

Health Hats: Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

From Episode#127 Healthcare is Hilarious, with Mighty Casey Quinlan. Jun 6, 2021

Health Hats: We’ve spoken every few weeks. Casey hasn’t been feeling well. She hasn’t been publishing her podcast. She recently discovered recurrence of her breast cancer with metastasis. We agreed to record a chat, I’d edit, and we’d both publish it. We recorded on May 28, 2021. Casey published the same day. Danny van L + Casey Q sittin’ around talking. I published on June 6th. See links in the show notes.

Mighty Casey: Greetings and salutations.

Health Hats: Greetings. I love seeing you.

Feel like I’ve been shoved through a pipe

Mighty Casey: It’s not bad to be seen. I will say that I’m not feeling like myself lately. It’s not that I’ve been hiding out, but I haven’t had the bandwidth, and the emotion to be as much of a public persona as I typically am. Also, because I have very little understanding of what the fuck is even going on. I know what’s going on, but I don’t know the outcome or the impact of what I’m doing and whether that’s having any effect on my overall survival. No one knows, and we won’t know for a while. I feel like I’m being shoved through a pipe, and here I am in the pipe.

Health Hats: So, talk a little bit more about, what does that mean, being shoved through a pipe?

Mighty Casey: For those who may be coming to this cold, I have spent the last year, or since August of last year, chasing what appeared to be a back problem that just was bedeviling me and didn’t seem to be giving into physical therapy or exercise or any of the usual stuff. As a result, nothing worked, and everything made it worse. The stuff that had typically fixed it previously. It only made it harder to do things like swimming, et cetera. and so that was disturbing. In early March, an MRI revealed that there was some metastatic mess going on in my lumbar spine. So, I was like, oh, really? It turns out I have a recurrence of breast cancer. So here I am with the metastatic cancer diagnosis and still have terrible mobility issues. I’m still not fixed on the spinal side. There’s some argument from both my perspective and the professional perspective about how much of this is due to the cancer process and how much of it is a separate issue that has to do with the fact that my spine is a mess. I think it’s a little bit of both. Sitting isn’t terrible, but I do need to move around.

Mobility

Health Hats: So, the ways to move around are to be carried, to be in a chair, or to walk. It sounds to me like you’re saying that any of that in large doses is problematic.

Mighty Casey: As I said, getting in and out of the house is an adventure. I do it, but the stairs out front are a thing. And again, it’s not something I want to do more than once a day. Usually, I try to limit out-of-the-house medical appointments to either once a day or put them in a clump and then leave the house and then go out once and come back once, and that’s it. Right now there’s not a lot going on. I went, and I had radiation treatment for a couple of weeks, and that was a daily deal.

Health Hats: Oh, so it was like trying to get outside every day and navigating the steps and all that.

Mighty Casey: My sister’s here, which has been an absolute blessing because otherwise I’d be screwed.

Health Hats: Because you live by yourself.

Mighty Casey: Yeah, I do live alone right now, and I am not really able to live alone just because of the mobility stuff. Yesterday I went back to the spinal specialist that I had been planning on working with until we got the metastatic cancer diagnosis, and surprise, I’m back, in March. And so, I reopened that conversation yesterday, and it’s OK. Now that we’ve gone down the cancer rabbit hole and are doing all that, that’s ongoing. How about we readdress the idea that Casey might be able to get up and fucking walk again? At some point, let’s not ignore that.

Bemused about dying

Health Hats: Are you pissed off?

Mighty Casey: I wouldn’t say I’m pissed off. More like I’m bemused.

Health Hats: Bemused. I like that word.

Mighty Casey: Not pleased. We’ll just say that Casey is not pleased with the idea of a stage four cancer diagnosis. But again, because I know so many people who have been on the receiving end of those various types, it’s not like I feel as though I’m the only schmuck in the universe that’s gotten stuck with this, not even close.

Also, it’s like I’m supposed to go home and die now. I mean, death is inevitable for all of us, and who knows? I could be seeing the end of my line as it were, but not as though that’s happening this week or even this month. I’m not feeling as though I’m about to shuffle off, but who knows? Death is an inevitable outcome for all of us. No one gets out of here alive, and in case you miss the memo. It’s still only a theory. It’s not something that I figure is happening this week. Or even this month. Or possibly even this year. But the fact that I’m now at the point of eyeballing my mortality pretty squarely. It’s like, how are you doing? How are you? Guess what?

Bored with the new you?

Health Hats: So, are you bored? Since you’re such an active person.

Mighty Casey: We’ll say that. Not being able to do much is not my usual, which is wearing me out that I’m tired. I’m just full-on tired, but I’m also tired of not being able to move and the feeling of being nailed to the perch, but I have to hope that it’s at least addressable. And so that’s where I’m sitting in my head right now. Find the problem you can solve and then go for that or find the problem you can attack, whether or not curing metastatic cancer. Maybe there’s a big eraser, and maybe this eraser that we’re using, it’s working. I don’t know. Or at least it’s erasing it enough that who knows? We’ll see what happens That’s one of those things that say, okay, I’m doing what I can. I’m following my treatment plan, I’m doing what’s on the list, and we’ll see where we end.

Health Hats: Honey, that’s a lot.

Not alone

Mighty Casey: It’s true. And that’s in the meme. Speak of our times. Welcome to the third millennium. Yes. It’s a lot. Any of it can be a lot. And yes, I’ve got a lot going on right now. Still, again, it’s not as though I’m in any way trying to minimize or push away the impact or importance of what it is I’m dealing with. Still, the fact that I’m not alone in this, yes, first of all, I’m not alone because I know a lot of people give a shit and are out there pulling for me, which makes a big difference. Trust me, it does. I know it’s there, and it makes a big difference.

From episode #132: Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home.

Health Hats: #127 was a matter-of-fact cold sundae with ‘oh, crap’ sauce. Then it melted into the hospital for pain management and electrolyte level-setting. We recorded #132 on July 1st, 2021. Casey rallied with self-reflection and advocacy. Still with that biting humor Casey published #MetsParty goes to the hospital! on July 3rd and I published on July 11th.

Health Hats: So, you’re home. Why’d you go in?

Mighty Casey: I had not grasped this because you onboard a lot of information when you end up in a situation, let’s say some stage four cancer thing, there is lots of information aimed at your head. I do like to think that I retain a lot of it, but it doesn’t all stick. I don’t know that I’ve gotten the memo that somewhere around 25% of the people with my illness end up on the drug that I’m on, which is a Pfizer drug specific to hormone-positive breast cancer, particularly recurrence in the later stage. They start you with a dosage of a hundred milligrams, and it feels like that dosage is too high for me. About 25% of us who end up on this medication end up with some kind of GI gastrointestinal. I was dehydrated. I called 911. I had no one to do that for me. I did it for myself because I knew that I was in trouble. This wasn’t getting any better. It was getting worse. I didn’t realize that it was going to be five days, but in comes the EMS crew, and out the door I go, and then I was there.

Pain management

Health Hats: When you went to the hospital, was your pain managed at home?

Mighty Casey: It wasn’t like not managed at all. Okay. But what I was taking, I had been on five milligram Oxy tablets, and then the Palliative Care bunch bumped that up to 10 milligrams every three hours. But in the hospital, the last couple of days I was there, they switched me to a 10 milligram 12-hour extended-release. I can now actually get up and walk with my walker. I could take a couple of steps before, but it was not pretty. I mean, it’s not like I’m doing a Rockette’s kick line. Do not mistake me, but, Getting back in the pool is something that seems possible now. Whereas until a couple of weeks ago, that was not feeling like it was on the list of shit Casey could end up doing.

Health Hats: When I talked to you briefly when you just got home, you were committed to not leaving the house for a few days.

Recognize privilege

Mighty Casey: Two weeks actually. I’m just going to be 100% that bitch. I will now take a short break to mention the fact that I recognize my privilege, deeply recognize my privilege as an older person who elected to go with original Medicare. Not that Medicare advantage managed the Healthcare mess. I had a broker work with me to pick the right plan for me, but I’m acknowledging that I didn’t have to pay the broker, the insurer, the people who sell the supplements.

Most elders, who are aging into Medicare, don’t know that this kind of stuff is available to them as services, help, guidance, and consulting, pick one. But because I knew this, so anyway, I have really good

Medicare, we’ll put it that way, and not that it pays for every last little thing, but it does pay for most of it. But again, grateful for the privilege. I’m in the position to be able to pay for that. It’ll probably be 600 to a thousand bucks. For me it’s fine. I can do that, and I am grateful that I’m in the position to be able to do that because that way, when I got home, I didn’t have to navigate the stairs. They brought me into the apartment. They didn’t have to carry me to my bed, but they got me in the door.

Hospitalists and coordination of care

Health Hats: How was it, being on the receiving end of hospitalists?

Mighty Casey: I can’t say that I got hospitalisted to a fare-thee-well by any stretch. There was one hospitalist, a woman who came and was there a few times. She did what she needed to do, and I think she was the one that put me on the extended-release pain meds. So that was thumbs up to the hospital crew. Doing that in concert with my palliative care and my oncology team came to see me in the hospital.

Health Hats: What was your view of the coordination of care then?

Mighty Casey: It was on me, but none of that surprises me. It’s like knowing that the person in the bed or the person in the room with the person in the bed needs to be the care coordinator or participate in care coordination. You just got to know that going in, and it’s not as though there will be no care coordination if you don’t do that. The yawning gaps happen when the people on the receiving end aren’t paying as much attention as the people on the dispensing end.

Health Hats: It always seems to me, as a nurse, that it was so much to ask. You don’t get in the hospital unless you’re pretty messed up. And it’s really hard to focus, right? Because you’re just gazing at your naval because you’re in misery.

Episode #139: Normal, A Dryer Setting with Mighty Casey Quinlan

Health Hats: I’d been feeling poorly, lots of pain affecting my mobility, ability to play my bari sax, and mental health. I was struggling to put out my podcast and Casey reached out to me. Let’s record together again. What a love! We recorded on August 7, 2021. Casey published #MetsParty – Danny & Casey Talking Altered States on August 21st and I published Normal, a Dryer Setting on August 29th. Again, links in the show notes.

Health Hats: I have something I wanted to talk about with you. We have been dealing with the up and down of altering states. What I’m interested in is adjusting to this new reality.

Mighty Casey: New realities and new normal. But normal is a dryer setting.

Steroids, love ‘em, hate ‘em

Health Hats: Yeah, I’ve been thinking a lot myself, is I’m on the downside of steroids. Steroids are the most wonderful drug in the world and one of the worst.

Mighty Casey: Yeah. I had to say not a fan. The one time that I was. Dexamethasone during this period over this year that you’ve been having my own adventure.

I was like, if you ever try to get me to take that again, I’m going to punch you in the face.

Health Hats: I feel that way until I hit a certain point. It seems like the only thing, but the point is no.

Mighty Casey: I also will say the Dexamethasone didn’t do crap for the problem. It was supposed, so it was like, I felt speedy and agitated, and all the stuff you get with steroids didn’t help. If it helped, I would’ve probably felt less face punchy about it.

Health Hats: Each time I’ve taken steroids, whether for MS flares or this back stuff, it’s like magic in how fast and how well it served its purpose.

Leaping tall buildings

Mighty Casey: When something works, it doesn’t matter what anybody else thinks. I’m just going to keep doing this planning. It’s all in the planning, but that’s the thing. People who don’t have to concern themselves with any kind of physical incapability, and it’s just, it’s not something that they have to think about. And having been in that crowd for 60-odd years, it’s just, even though I had a lot of empathy and understanding. When I was making plans with disabled friends, I would make sure to think it through, like where am I asking them to go? What am I asking them to do? Also making sure that I hadn’t done something stupid. But at the same time, you don’t realize how much the world is set up for people who can leap tall buildings at single bounds. How much of the world is not set up for anybody who can’t do that?

Engaged with sax – changing capabilities

Health Hats: Yes. There’s also, for me, a couple of levels. The main one is playing my horn. Yeah. I can play for 10 minutes, and 10 minutes is a tune. 10 minutes is not sufficient, and I’m waiting on an assistive device. Hopefully, that’s going to help me. But it’s interesting thinking about, okay, maybe I should start playing the kazoo.

Which horn is it that I play? A baritone saxophone. It’s a 25-pound horn. That’s a good side story. It’s a big horn. And I love it. I have played clarinet in the past, and I have played alto sax, but I don’t want to. When I’m thinking about it, I think, okay, is this my new reality? And okay, so what does that mean? So, part of it is, as you’re describing, is the logistical, practical, okay, these are the capabilities today. What does that mean in terms of going to the bathroom or getting in the door or out the door. But then I’m also Thinking “oh my God, this is the new me.” Do I like this?

Patient hackers adapting

Mighty Casey: Challenge your ability to adapt. I have to go through this like a version or like a small slice of it myself currently with the mobility issues presented by bone mets. That have settled into my hip, pelvis, and lower spine. It’s just, it’s been an interesting journey. Again, the empathy piece. Not as though I was, I considered myself the most empathetic person on the planet, but I realized that even I, who thought I was doing okay, fell short in some things that one assumes about stuff. Yeah. But it’s certainly put on my mind now, and if I don’t think it will happen. But if I fully regain total mobility, I’ll be really grateful for that. But in the meanwhile, in my current situation, whatever I can do, I will try to do, and whatever I can’t do, I will try to figure out a hack. We call ourselves patient hackers, people who confront the medical industrial complex and have needs beyond. People who have healthcare needs beyond Yeah. I don’t need that. I’m okay. You have to figure out how to work this system hacking. You have to figure out how to work the system to get what you need. We’re all hacking this all the time. I think it does a disservice to people who fix problems/issues, and things that aren’t working for them or their communities. We’re all hackers in that sense.

Health Hats: It’s good to talk to you, and I look forward to seeing you.

Mighty Casey: I look forward to seeing you too. like I said, this is pretty much a mortal lock unless they cancel the con, and we’re going to observe proper protocols, but we will still love the hell out of each other however as we do it.

Not quitting till I’m dead

It’s just, the things I’ve learned in the journey and this year has been a never-ending journey. This learning as I am getting ready to depart from my birthday dinner is cancer can’t kill me yet. I have too many problems to hack fix in healthcare. So, f**k cancer, I’m not done, and I’m not quitting until I’m dead.

And then I want you all to carry me off the battlefield on my shield and then keep fighting. Because that’s the only way we’re going to hack this universe into a more human-friendly place.

Episode #181: Mighty Casey Unplugged

Health Hats: Let’s just say Casey’s health is not great. You see us two baldies talking to each other after the space of about a year. Casey’s had COVID, chemo, starting with palliative care. We recorded on October 28, 2022. I published an audio and video episode on November 26th. Casey never did publish this episode, although she did publish a #MetsParty update Can we haz moar hope plz? on December 2nd.

Health Hats: Let’s jump right into the chat. Hello, my love.

Mighty Casey: Hello, dear. How are you? What’s going on?

Health Hats: What’s new? I’m working on a series about young adults with mental illness. It’s been fascinating pulling it together, meeting people, thinking about its scope, and finding people with lived experience to share their stories. So, it’s rooted in reality.

Mighty Casey: Yeah, exactly.

Health update – not great

Health Hats: Tell us about your health.

Mighty Casey: Just say it’s not great. I went through, let’s see, at the beginning of this year, things looked okay, other than I did get a mild case of omicron, a breakthrough. I guess it was like the first week of January. But everything seemed to be just bumping along. But then, in April and May, my kidney function started to look funky, right? Technical term.

In June, I was in the way of needing to see a nephrologist, and there was some deep concern about kidney failure. And the last thing I want to deal with right now is dialysis. So, I was working on, okay, how do we get past this? And they also, at the same time, were strongly suspecting that it was because of the treatment I was on. Okay. The oral medication I was on for my cancer was part of the problem because there were a lot of other issues around anemia and calcium levels, and things just kept going further and further down into the, which led to me being hospitalized. Twice, once in August and once in September, they took me off the medication.

I was on breast cancer medication. I stopped taking that. I want to say it was in June, but it took a while. My kidneys are okay, not great, but they’re no longer in kidney failure. Occasionally they have to hit me with a drug called Zometa. That is, what that does is it reduces blood calcium levels, and they haven’t had to hit me with that for, I guess, like a month or so now. So that’s good. I’m on. I use traditional chemo now versus the oral medication I had been on. I’m on a class of drugs called Taxanes.

Crying over spilled hair?

As we’re sitting here looking at each other, people will be listening to this, but yes, all my hair fell out, but that’s fine. I’m not going to cry over spilled hair. Why? Why worry about it? Other things are more important, like getting this cancer under control.

I had a CT scan yesterday. A progression scan and things are at a stasis point. A spot on my liver has been there for a little while. I did end up with a broken rib. I was pretty sure it was a broken rib and that was a pathologic fracture the way that the cancer is in my bones and my spine.

I had broken ribs, visible, healed, and broken ribs, visible on an MRI last year when I felt like I had a broken rib. I was pretty sure it was a broken rib, and it was. The pain has passed off now, blessedly, because that was pretty awful. But the pain itself only lasted for, I guess, about a week or so, maybe ten days.

It wasn’t that bad, but they’re talking about maybe doing another round of radiation in that area just to, we’ll see. But I’m chemo-brained badly at this point. I can still work on audio and video editing and my projects. I do stuff for medical journals and societies through a major publishing house.

But other, I can’t write. I can’t write to explain right now. I had to turn down a writing project that was worth a few thousand dollars this month just because I couldn’t. I’m just not in the zone where I can write like that right now. And they’re infusing me every three weeks. I go in for another infusion next Thursday, and the cadence seems that the first week to 10 days is the worst of the chemo brain. Wow. I think now we’ll see. It’s the one question I keep forgetting to ask, and I will remember to ask next week when my appointment with my oncologist. How many of these do you see us doing? And because every three weeks for 12 to 18 weeks, that’s six months or close to it. So that takes me well into next year.

And now I’m concentrating on the small stuff. I still want to get back in the pool.

Health Hats: So, how’s your spiritual health?

Mighty Casey: Spiritually, I am seeing or talking to palliative care. And I’m okay. I can’t say that I don’t. There are good days and bad days. I’m okay. I don’t know where we’re headed with this short-term or long-term. But I’m just waiting for a signal, and there may not be. Who knows? Who knows. But, again, the progression scan thing didn’t give us anything to hang our hat on yet. Yes, they confirmed that I did have a broken rib. There’s a little bit of ground glass in my lungs. They think maybe that’s a leftover from the covid thing, although my covid infection was minimal.

But I’m just, every day I wake up, and it’s a day, and I live through it, and then we do it again the next day. Yeah. And as long as that keeps happening, I’ll keep pressing forward.

Health Hats: When you reflect on your career as an activist, how do you recognize success in your work?

Mighty Casey: What we’re all trying to do, is such a huge heavy lift and giant pivot, a long-established hierarchical setup, process, industry, whatever you want to call healthcare. I don’t know. Every once in a while, here’s something that gives me a sense that some potential change has happened. But pretty much everything will be recognizable more in a look back than it will be anything you can see happening like in real time around you.

And I think my measure of success. I don’t know that I have one. Okay. I just get up every day and go and do what I do. If I hear somebody saying something that I know I’ve been saying for a decade, but I never heard them or that group say it before. Yeah, that’s progress. That’s progress. And that’s progress. We managed to create a little bit of something there. We’ll see. But then that’s the, we’ll do a test, or we’ll do a pilot. The thing that I see too many sorts of industrial side players getting trapped in, though, is that death by a thousand pilots. They do a thousand pilots. And, but they never actually do an entire system through their entire system. They don’t flush through the whole thing and change their processes enough to make it truly patient-centered. Yeah. Patient-focused. Even patient-led, in some cases, they could do with some patient leader. And that’s why organizations like PCORI, the Patient-Centered Outcomes Research Institute, and other international groups are one of the reasons they came into existence, to at least try to push some of that through.

But again, we’re dealing with this vast hierarchical structure that’s been built over millennia. Not very scientifically based, let’s say 2000 years ago. We’ve gotten a little better in the last few hundred years, but we’re still tripping over ourselves as a species. Discovering things and figuring out maybe that idea about the leeches was not a good idea. There’s still some leech stuff that’s left lying around. Why do we keep doing something if it’s meaningless? Or if it’s just because it’s the way we’ve always done things, that’s why we’re doing it this way, looking at processes and systems and saying, why do we do it this way? Is there perhaps another approach we can take that would be either safer, faster or more effective? Pick your descriptor, but which is trying to think of new pathways and new ideas that go beyond just a scientific experiment. And the other battle that drives me crazy is this whole qual versus quant. Or qualitative versus quantitative. Everybody wants their numbers, and they want their little data sets, and they want it scientifically. We titrated this, and it was a chemical formula. Then we did a, we did algorithms, and it was all about the data and the numbers and the statistics, and that’s when it’s quantitative, then we know it’s real. Still, it’s qualitative, soft skills, and people talking to each other, and we don’t see any science in that. What the hell? So, wait a minute. No, that’s not right. But we’re still in that zone.

Health Hats: If you think about our mutual audiences, what advice do you have for us in these trying times? Do you think that, oh, this works? I found this over and over. This works. I know one of the things you’ll say is to build relationships across bridges is something you’ve said since the moment I met you.

Mighty Casey: You must bust the silos. You have to break down those communication channel silos as much as you need to break down the silos between data exchange, et cetera.

Health Hats: Yeah. What else?

Mighty Casey: I don’t know. We’ve got globally and then. Our own in the US of A thing. There’s a colossal species-wide challenge. We’ve got so many things confronting us right now. Everything from the fact that we’ve managed to screw the climate almost beyond recognition, and also the rights of individuals as citizens seem to have become less important than the rights of some rich people who get to buy governments and put their little puppets in there basically and have it all be the entire system of everything set up to reward them. This small percentage of humanity and the rest of us can all just go between the United States and the rest of the developed world. The world observes democracy as an actual process. Although that’s an open question right now, given the way that democracies, in many ways, are behaving. You just look at the UK and the US; we’re such a hot mess between us. It’s hard to wrap your head around how bad things are.

If you sit and think about the macro picture too much, though, you can end up stuck because there’s just Yes. So much that’s wrong that we thought we were making progress, but this feels, instead of the two steps up and one step back, it’s like we took two steps up, and now we’re rolling back three centuries. Wait a minute, are we going back to the feudal state now, and are we all going to just basically be sitting at the foot of the castle walls waiting for the nobles to throw some scraps out so that we can eat this week or paper towels and let’s where we’re at.

Health Hats: Thank you. This is lovely. Thanks for doing this with me.

Reflection

Bald is beautiful and shows on the outside. Brain fog on the inside freaks me out. Last time I spoke with Casey in mid-March she didn’t sounds lucid or humorous and she couldn’t spin a yarn or offer wisdom. Casey impacts me/us in the patient-caregiver movement. I’m grateful. I’ll pray for Casey and her sister, CeCe. Jan Oldenburg and I commit to saving an archive of Casey’s work. We’ll be calling on you.

Podcast Outro

I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Leon van Leeuwen edits the article-grade transcript. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.