Talk About Cancer

Saved by activism

• Episode 33

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Laura explained how being diagnosed with cancer gave new meaning to her work as a health care advocate and that staying engaged with advocacy actually helped her push through her cancer treatment.

Laura mentioned Imerman Angels, which has also been referenced by a few other guests on this podcast about the wonderful one-on-one peer support they offer.

If you are interested in getting your story out for advocacy efforts, check out the resources offered by Laura’s nonprofit Health Care Voices.  You can also check out Laura's video on Now This asking Trump to not take away her health insurance by repealing Obamacare. Connect with Laura on Twitter, Facebook, and Instagram.

Please follow the podcast if you are enjoying the show. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

When I first heard about Laura’s story, I didn’t understand how she was able to continue her advocacy work in the middle of her cancer treatment. As we all know, cancer treatments can be incredibly draining physically and emotionally, so going to a public meeting to challenge my senator’s voting choices would be nowhere on my to-do list. But that’s exactly what Laura did.

But it all made sense when she explained - which was that as challenging as our political system is and as controversial as Obamacare is, it was still something that she had a better chance of affecting than her cancer. The juxtaposition of this says everything you need to know about the cancer experience. 

SPEAKER_00:

Hey everybody, it's Serena here, and this is episode 33 of the Talk About Cancer Podcast. A quick ask before we start: if you've enjoyed listening to this show, please share it with two people who may also benefit from listening to other people's stories about dealing with cancer in its aftermath. Stories can help us process our own experiences and sometimes point to a possible way forward if you're stuck. In today's episode, Laura explains how being diagnosed with cancer gave new meaning to her work as a healthcare advocate, and that advocacy was also what got her to push through her cancer treatment. Let's dive into her story now, and I will check back in with you at the end.

SPEAKER_01:

My name is Laura Packard, and I live in Denver, Colorado. But uh I've lived all over the world as a kid. I was born in Southern California, and we moved to England when I was 10 and Hong Kong when I was 12, and then uh Michigan. I've worked uh with political campaigns and nonprofits, and so I've moved all over the country for that. So I've lived in Colorado since the beginning of 2019, but I have been all over. And I was uh diagnosed with stage four Hodgkin's lymphoma in the spring of 2017, and concurrent with that was when Congress was attempting to repeal the Affordable Care Act, which was the insurance that was keeping me alive. So that really got me to step up my activism because uh while I was going through treatments, I also was fighting to keep the insurance that was paying for those treatments.

SPEAKER_00:

If you can reach back in your memory, although most people remember this, like it was yesterday. What was it like to find out that you had stage four Hodgkin's lymphoma?

SPEAKER_01:

Well, I wasn't expecting it because my experience of life was that is an extremely healthy person. So um I had this cough that never uh really went away. Uh at the beginning of the year, I went to urgent care and they gave me some antibiotics. They diagnosed me with a mild pneumonia and said, you know, coughs a linger. It can take a while to go away. So I took the medicine, I felt better. My cough never really entirely went away. So then I went back to the doctor because I was getting ready to um go to New York to speak at a conference. So I figured, I'll go back, I'll get one more round of antibiotics, that'll kick this thing. And that's what really started everything in motion. And it was quite a shock to have to change your mental image of yourself immediately from I am an extremely healthy person to I have uh stage four cancer.

SPEAKER_00:

Yeah. And one of the questions that I had was just because I am someone who's never been kind of an independent entrepreneur or consultant. I've always relied on a big company to give me my insurance. What was that like to have to navigate our healthcare system? And I know on your website you said that Obamacare saved your life, but I also know that there are also a lot of challenges with that system. So can you tell us a little bit about what that was like?

SPEAKER_01:

Uh well, if you if you aren't working for a big company where you have one plan, even going to healthcare.gov and looking through all the options, it can be hard to figure out what is the best thing for you. Uh and that's something that I'd had to do every year since the exchanges opened up in 2014. So at the end of 2013, I had to select a plan and do it every year. And since 2014, I've lived in Michigan, Nevada, Colorado. So, you know, I was selecting insurance plans in three different states over time. It's not something that even experts can do really easily. And in fact, uh, right now I work with a friend that is an insurance broker to sort of talk me through the different options and what's the best thing for my situation. So I was really winging it. But at least with the Affordable Care Act exchanges, you might select a plan that's better or worse for your particular circumstances, but you're never going to wind up with a junk plan that doesn't cover what you need. It's just how much you pay out of pocket. You know, there some plans are maybe a better fit for your particular needs. But yeah, it it shouldn't take an advanced degree to figure out your insurance situation. But unfortunately, you know, with terms like uh co-pays and annual limits and how much percentage is covered and who is in network or whatever, it it can feel like you need to be an expert uh just to figure out your plan.

SPEAKER_00:

Are there any resources to help people figure out like what's the right plan for them?

SPEAKER_01:

Well, it is free to work with a broker if you make sure you work with somebody that is reputable and that isn't going to steer you to a junk plan because they get a bigger commission or whatever. But you can work with an individual, an insurance broker. Sometimes there are navigators, community assistors that can talk you through this, and that shouldn't cost you anything. And in fact, if they want to charge you something, then there's something wrong. So there are experts out there to help you. It can be helpful when you're figuring out your insurance situation for next year to take a look at your tax returns and take a look at your records and figure out how much you spent on medical this year and then sort of guesstimate how much you might need for next year. But I mean, that can be hard to do when your health is unpredictable, when life is unpredictable. I mean, nobody expects to be hit by a bus tomorrow.

SPEAKER_00:

I did not know that there were brokers that you can work with. That's a that's a new thing for me, but okay, it's good to know.

SPEAKER_01:

And if you go to healthcare.gov, there are resources on there that they can direct you to somebody local that can help you out. Was that a big source of stress for you? I would say it was an annoyance as opposed to a stress before I was diagnosed. Because again, I see a doctor once a year for a checkup. There was nothing going on with me. So whichever plan I picked, it didn't really matter so much because I used it so infrequently. So it was it was annoying but not stressful until it became critically important.

SPEAKER_00:

Let's talk about when it became critically important. Tell us a little bit about what was happening at that time.

SPEAKER_01:

Well, I was diagnosed in April of 2017. And once they tell you you have cancer, everything speeds up so fast. I had an appointment with a pulmonologist, a lung specialist, an oncologist. I got appointments for um MRIs, check my brain to see if the cancer had spread, uh, bone biopsy to see if it was in my bones, a PET scan to check my entire body to figure out where everything was at. So uh immediately I got plunged into medical world where I started accumulating specialists and tests and everything so fast. And at first they thought that I had lung cancer because cancer in your lungs, more likely than not, is lung cancer, you know, like you expect a horse, not a zebra. But it turned out it was lymphoma, it was blood cancer that had spread to my lungs, which is a much better diagnosis to get in terms of prognosis and how they can treat it or whatever. So I started off the first couple of weeks. I thought I had a terminal illness, but doctors never really tell, they don't really want to tell you that. So you sort of have to Google and realize okay, this is a very bad prognosis. Um, they're not telling me that, but they don't think I'm gonna survive this. But then it turns out that the first diagnosis was wrong. But as a patient, you learn to sort of become your own expert in a way, because understandably, doctors are reluctant to give you bad news, really bad news. Like it is extremely hard for a doctor to say, you know, you're gonna last two months or six months. So that pushes a lot onto patients to have to do your own research and be your own best advocate because humans don't like to deliver bad news to other humans. But unfortunately, what that results in is you having to, you know, figure a lot of the stuff out that you have to read between the lines that they won't say.

SPEAKER_00:

Yeah, definitely. I was just working on another episode yesterday, and this is just the theme, right? Um, another guest of mine was like, just give it to me straight, right? Like you think somehow you are saving my feelings, but really you're saving your own. Right. Because I need to be fully informed to be able to make the right decisions for myself, and you're really just avoiding having a hard conversation with another human being. Exactly. Which is something that medical schools and the medical profession just needs to continue to work on. It's really unfortunate.

SPEAKER_01:

Well, I found out after the fact, uh, you know, I asked my oncologist after I went through all this treatment and I was in remission, I said, so if it had been lung cancer, uh he said I would have made it through Christmas. So he would have given me, you know, like six months to live, but they never said that.

SPEAKER_00:

Right. And so just thinking about that, like you mentioned, since you moved around a lot, you know, maybe you didn't have as large of a support network around you. And then being a you know, self-employed person, having to navigate a lot of this insurance stuff on your own takes a ton of time. And dealing with a stage four diagnosis is also incredibly scary. Where did you find support to get through that period?

SPEAKER_01:

Well, I was fortunate. I was living in Las Vegas and my dad lived in Las Vegas. My mom lived in Tennessee, and she flew out every other month to help take care of me. So I was fortunate that both my parents were retired, they had the flexibility, and also that my my work, you know, I'm self-employed, set my own schedule, I can work from home, I can do digital things, you know, websites and writing emails and stuff, even flat on my back recovering from chemo. So I was fortunate that I was able to keep working. So I didn't have to worry about the financial piece so much and that I had the caregiver piece covered through my parents. But uh most people don't have that collection of resources. And also, uh, once I got the diagnosis and I knew that the cure rate is is pretty high, I didn't have to deal with things like trying to get onto Medicare, which as a metastatic cancer patient, you are supposedly more eligible for. So, I mean, there are various hoops I didn't have to jump through to get Medicare and Social Security assistance or whatever that I might have done with a different diagnosis. But again, that's more paperwork, more agencies you have to deal with, more struggle while you are struggling with uh basic healthcare.

SPEAKER_00:

Did you try to join support groups, either online or you know, in person locally?

SPEAKER_01:

Uh, what I ended up doing when I got the lung cancer diagnosis, I immediately did a bunch of research. I figured out experts that I wanted to get second opinions from. I figured out online support groups. I met some amazing people. Uh so I really mobilized in that first week or two. And then once my diagnosis, the severity of it, kind of got downgraded a little bit, I did eventually join some online Facebook Hodgkin support groups. And I also signed up for Immerman Angels, which you may have heard about is a free program. Um, they're run out of Chicago, but it's, I think it's international, where they match you with somebody with your type of cancer that is in remission or living with it, maybe. But so they match you with somebody that has similar circumstances so they can talk you through stuff. And then I did a lot of Googling. So before my first chemotherapy session, which was A B V D, um, Adriamycin, Bleomycin, um uh Vin Blasting and Doxirubin. So I Googled that. I read people's experiences with what they went through with chemo. And so I was, I guess, as prepared as you could say you'd be you could be prepared. I brought popsicles during the the Adriamycin push and brought things to do and didn't eat my favorite foods so that I wouldn't get them associated with chemo, like all of the things. So I I think in that way, uh living uh in modern times, it the internet can be an incredibly useful resource that, you know, 20 years ago people did not have.

SPEAKER_00:

I totally agree. Well, I joined Smart Patient when I was going through that period of time with my dad, and for some reason, a very active group of kidney cancer patients um and caregivers on there. And so I definitely got a lot of good resources. But, you know, also I think a little bit of what we were talking about at the beginning is just like it there's something so powerful about just knowing that you're not alone. You even though you mentally know that, yes, of course, I'm not the only person that's impacted by this, but to just actually see and read about other people's experiences is just something that's strangely comforting.

SPEAKER_01:

Well, also I I crossed over from the land of the healthy to the land of the sick, and I didn't realize beforehand how big the land of the sick is. Once I made the decision to be public about this and I posted it on Facebook and so on, uh, random people, friends, and acquaintances came out of the woodwork, people who were dealing with cancer or had dealt with cancer or knew somebody. Uh, so even for a rare disease such as Hodgkin's lymphoma, which is a couple hundred thousand people in in the US have it, I think. It turns out, and actually two of my friends were were among them. So just there's this veil between the world of the sick and the world of the healthy. And then when once you cross that veil, you realize just how many people are a part of that world that you just had no idea because you weren't speaking that language.

SPEAKER_00:

That is such an important point. I had the same experience when I, because when I started my podcast, I first started out with just friends and family. And in that process, I had a couple of friends who came forth and was like, Oh, yeah, you know, uh, my dad was sick with cancer all my childhood. You know, it's been like a big boogeyman for me. I was like, wow, I've known you for 10 years. We've never talked about this. I had not known. And then others came forth and said, like, yeah, I had lost family members in the last year to cancer. And so, yeah, people still don't talk about it. And not that it's like the number one dinner party discussion topic, but there is something really important about just kind of normalizing that. It does happen to almost everybody because I think the statistic is like, you know, every person has like a 30 plus chance of being diagnosed with cancer sometime in their life. So if you really think about that, that's gotta be somebody you know in your lifetime.

SPEAKER_01:

Well, I think also uh is sickness is not really talked about if you're healthy, just like at least in American culture, it seems like we we don't talk about death. We don't talk about sickness unless you're in it. And then the rules change. But it's it's just like with uh religion and politics, it's not polite or something to talk about it.

SPEAKER_00:

Yeah. That is right. And so tell us then what happened when because I, you know, you continue to work. It sounded like you managed to make all of that work. And so you remained plugged in. I mean, even before you became sick, you were already very active in the political realm. So tell us about what happened when you saw that there were proposals to repeal Obamacare.

SPEAKER_01:

I've been in and around the healthcare world for a long time. Uh, the AFL CIO sent me to Arkansas in 2009 to help get the Affordable Care Act passed. So I was working with people uh with tragic stories a long time ago, never realizing that it was gonna eventually be me. But uh this was something that I had been working on, but an arm's length removed. You know, it wasn't personal. Then I was diagnosed in April. And in May, the day after my first chemotherapy appointment, the U.S. House voted to repeal the Affordable Care Act. So I was at home on my sofa, you know, waiting for my body to fall apart in new and extremely unfun ways while they're parting it up on the Capitol Hill lawn. So that was just outrageous to me. And then that summer it didn't really let up. So every couple of weeks I would go to my chemotherapy appointment and be reading the news about yet again another proposal that they were floating to feed people like me to the wolves because all of their plans left people with uh pre-existing conditions vulnerable.

SPEAKER_00:

Obviously, that made you feel really angry. Yes. Were there other things like swirling through your mind as you were sort of reading the developments on Capitol Hill? Uh I think mostly anger.

SPEAKER_01:

Uh some fear, but anger was a more productive emotion for me than fear, because there's anger gave me fuel to do something. Terror didn't really give me anything. And I already was dealing with stage four cancer. So I was full up on the terror bucket. I was ready to move on to anger. Yeah. Uh, because this was, you know, unlike with cancer, all I could do is go to my appointments, you know, be poisoned with chemo, be burned with radiation, see what happened in my body. I had no control over that. But with Congress, with these attempts to repeal the Affordable Care Act, I didn't have control over how they voted, but I had a lot of control over what I did about it. So I would speak at press conferences in Las Vegas. I wrote an op-ed that uh ran in US News and World Report. I did videos with Now This. So that part was actually a thing I could control in the midst of all these terrible, scary things that I could not control.

SPEAKER_00:

How did you manage? Because that's, I mean, I know it's like you were channeling to take action, and that sounded like that was something that was positive for your mental health. And I feel like this happens a lot to many of us with politics. Like you feel like decisions are being made and you feel helpless because you feel like you can't control it, but it's directly impacting your life. So I get that, but how did you balance that between being angry and being active, but then also like self-care because you're trying to fight a disease and recover from the treatment?

SPEAKER_01:

Uh I don't know that I would say that I was very balanced.

SPEAKER_00:

I mean very honest answer.

SPEAKER_01:

The year 2017 for me was all about cancer stuff and political stuff. And there was no there was no life balance in there apart from that. But again, I was immunocompromised, so it wasn't like going to parties or going to shows was really a great idea. So in that sense, I lived a little bit like how people have lived during the pandemic, where I would go out to get groceries, I would go out to give speeches, I would go out to see my doctor, and that was my 2017.

SPEAKER_00:

And if you had the chance to do it over again, would you do it any differently?

SPEAKER_01:

No, I don't think I would do it any differently at all. I mean, that got me through. Um it gave me something to do, a reason to have gone through this suffering as opposed to suffering with no reason at all. I mean, I don't know why I had lymphoma. There's nothing I can point to genetically, or I didn't live next to a toxic waste dump that I'm aware of. You know, so there was no reason I could point to for why this happened to me, but it gave me an outlet to do something constructive about it.

SPEAKER_00:

And as an activist, how do you think about your cancer experience today? What does it mean to you?

SPEAKER_01:

Well, I'm living in the in-between in that it's been uh, you know, four years since I've been through all this stuff. I just saw my oncologist this week. My blood levels, everything looks okay, but you never know. I didn't know how sick I was in the first place. So that's alarming if you think about it. Like if if you could be really, really sick and you're not aware of it, then you could be really, really sick again and you wouldn't necessarily be aware of it either. But that's not something I like to dwell on because again, it is scary and it's not something I have any control over. So it it's much more fun for me to be active in doing things politically, like the infrastructure plans right now that Congress is working on, the healthcare pieces and that. So focusing my time and my energy on things that I have power over as opposed to things that I don't, that's more rewarding mentally for me.

SPEAKER_00:

And is there anything that you want the listeners to be aware of in terms of healthcare activism right now and how they might be able to pitch in if that's something that they're interested in?

SPEAKER_01:

Well, in the wake of all the battles of 2017, I founded my own nonprofit called Healthcare Voices to help advocate and guide for people with healthcare stories like mine. So we've put on several different trainings for healthcare storytellers on how to write and get your opinion piece published in the newspaper to how to be compelling as a public speaker, to how to frame your personal story and message for advocacy. So all of those uh trainings are available at healthcarevoices.org slash learn. They're archived there. There's a lot of materials. So if you are interested in dipping your toe into activism, into sharing your story and using it for something, then you should check those out.

SPEAKER_00:

Awesome. Any other thoughts or words that you want to share with the listeners just based on your experience?

SPEAKER_01:

Well, I would say activism was a really therapeutic and powerful outlet for me, but nobody is required to share anything that you don't want to share. Uh, this is an option for you with your personal story, but nobody is ever going to demand it of you. And if what you need to do is take care of yourself and get through what you're going through, then you should do that. If you are willing and able to do something about that experience, there are many uh groups that would love to hear you, but again, you are not obliged to do anything you don't want to do. This is an option, not a requirement.

SPEAKER_00:

And I find that at least in the communities that I'm a part of, what a lot of survivors and patients find helpful is creative advocacy, you know, finding community through things like music and writing, and that may be a little bit more accessible if they don't want to be super, you know, politically involved. Because I think that's a bad word in this country right now.

SPEAKER_01:

Well, also, I mean, whatever you're going through, whatever condition or disease, there probably is a nonprofit group for that. So, for example, I do some volunteering with Leukemia and Lymphoma Society. And with that, we had just had a virtual uh day on the hill where we lobbied our senators and our congressperson to uh vote for bills that would help leukemia and lymphoma patients and survivors. So you can get plugged into whatever organization covers what you're going through, and that might be a good way to get started because again, this lobbying day it was virtual. It was maybe five people or so in a Zoom with a congressional staffer, so it was not all on you to do anything. So that also might be a good way for people to get started and get plugged in.

SPEAKER_00:

Yeah, that's a really good point because I was just thinking how do people stay up to date on what's actually happening on Capitol Hill and you know, understand what the impact may be because so many of those things are so complicated. And by the time it gets to you, you're like, I don't actually know what this means. So yeah, going through the different associations, they generally would have a team that helps to interpret that type of information.

SPEAKER_01:

Yeah, maybe you start by sending up for their email list and get educated and see where you go from there.

SPEAKER_00:

Awesome. Aside from Healthcare Voices website, where can folks connect with you online?

SPEAKER_01:

I am on Twitter at LPackard. Uh, that is probably the easiest place to find me, although I also have a Facebook page and Instagram account, Laura Packard Activist.

SPEAKER_00:

I'll put all of those in my show notes. So thank you so much, Laura, for taking the time to share a bit of your journey. And it was really interesting to chat with an activist and your perspectives on how to get plugged in. So thank you so much for sharing all of that info. And thank you for your time. When I first heard about Laura's story, I didn't understand how she was able to continue her advocacy work in the middle of her cancer treatment. As we all know, cancer treatments can be incredibly draining physically and emotionally. So going to a public meeting to challenge my senators' voting choices would be nowhere on my to-do list. But that's exactly what Laura did. But it all made sense when she explained, which was that as challenging as our political system is, and as controversial as Obamacare is, it was still something that she had a better chance of affecting than her cancer. The juxtaposition of this says everything we need to know about the cancer experience. And that's a wrap for today. Please consider following the podcast if these stories are helping you deal with your cancer experience. Also, I very much welcome any feedback and suggestions you may have for the show. You can contact me at info at talkabout cancerpodcast.com or find me on most major social media platforms. Thank you for listening.