[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lu and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope you living beyond cancer, you find hope, healing and empowerment.
Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond Cancer.
[00:01:14] Speaker C: Hello everyone. This is Gail AKA Sunshine. September is blood cancer awareness month and today we have Tricia Hernandez and Alyssa Baldwin from Blood Cancer United States joining us around the campfire. So welcome to both of you. We're so glad you're here.
[00:01:29] Speaker A: Thank you for having us.
[00:01:31] Speaker C: So I'm going to start by asking each of you to tell us a little bit about yourself, where you're from, career, family, that kind of thing. And then please include one fun fact. And Tricia, I'll start with you.
[00:01:42] Speaker D: Great.
[00:01:42] Speaker A: I'm Tricia and I live in Atlanta now, but I was born and raised in upstate New York and I have a of lot a wife and an adult son who is in college right now.
And my career path has been a certainly a journey and not in a straight line. I have a master's in clinical psychology and started working with kids in the juvenile justice system, but have since moved into various mental health roles, then various nonprofit management roles, including my own nonprofit foster care agency. And then ultimately when my post cancer miracle baby was born, I decided to stay home with him for a while.
And when I decided to get my feet wet, back into the full time work world, Blood Cancer United, we were formally the Leukemia Lymphoma Society at the time had an opportunity for me and so I'm thrilled that sort of my life and my cancer experience has come full circle and I landed at Blood Cancer United.
[00:02:56] Speaker C: Well, I've already learned something because I didn't know that it used to be the Leukemia Lymphoma Society. So.
[00:03:03] Speaker A: Yes, and one fun fact, one fun fact. I'm a watercolor artist and I've actually folded that into some of my work here at Blood Cancer United in providing meditative watercolor studies sessions to cancer survivors.
[00:03:16] Speaker C: Ah, that is awesome.
All right, Elissa.
[00:03:20] Speaker D: Yes, So I am, I live in Portland, Oregon right now and I'm originally from southeastern Washington, near the Hanford Nuclear Reservation. For all those science nerds out there, I, I work now as the director of national Patient Education. So I host our podcast the Bloodline with Blood Cancer United and also do our videos and webcasts for patients and caregivers.
And my fun fact is that I travel to Europe every year. Europe is my happy place. And Trish is nodding right now because she knows she's always seen me pop off sometime. And. And it was actually, actually where I got diagnosed with cancer, which I will go into a little bit later.
[00:04:11] Speaker C: Wow. Europe in general, or do you have a happy, happy spot that you like to go to? India.
[00:04:17] Speaker D: It's hard to pick a place. I. I generally travel around western Europe. I'm going to Malta in Sicily in the fall. So I'm really looking forward to that. Last year I was in France, and so, yeah, kind of bopping all over the place. Lisbon is probably one of my favorite places to be. I love Portugal.
So I guess if I had to pick only one, that would. That would be it.
[00:04:42] Speaker C: I love it. That's great. Well, Trisha, I'm wondering if you can tell listeners who may not be familiar with the term blood cancer what that is. What if you can give us an overview the different types, some of the warning signs, risk factors, things like that.
[00:05:00] Speaker A: Blood runs through our entire bodies, so it makes it hard to narrow it down to one thing when we talk about blood cancers. There's actually over 100 types of blood cancers. They fall into some major categories, and they fall into those categories because within them, the variations function pretty similarly.
So the categories, the big ones for us are leukemia, lymphoma, myeloma, myelodysplastic syndromes, and myeloproliferative neoplasms.
That those are big mouthfuls of words, but they basically mean some. Some blood form of your blood cells, whether they're red blood cells or platelets or white blood cells, are not acting correctly in your body, and.
And they can make you very sick if that continues on an ongoing basis.
So that makes a single set of triggers or symptoms much harder to target in blood cancer. Often what brings most of us survivors to an oncologist in the first place is some very general symptoms.
Fatigue, fever, rash, unexpected bone breaks, unexplained pain.
Those can be attributed to many things, so it's hard to narrow it down.
So what we really encourage folks to do is to have those annual physicals to make sure there's comprehensive blood testing done at those annual physicals so that if anything abnormal shows up, it's caught as early as possible. Many times, blood cancer patients are diagnosed when there's been an accident and they find themselves in the hospital, and that's when blood is drawn and they find themselves being diagnosed at the same time they're dealing with whatever other health situation or scare has happened.
So we really recommend those regular physicals with comprehensive blood testing every year to keep on top of it. And, and because that's not definitive. Right, right. Six months later, you could end up being diagnosed with a blood cancer unexpectedly. If anything doesn't feel right in your body, go to your doctor and make sure your blood gets tested.
Sometimes when you go into a doctor, they may say, I don't want to test your blood because you're coming in for this pain. And that's not really when we would test for blood. And we really encourage folks to advocate, look, something's not right, something's not happening in my body correctly. I need your help to help me understand it. And I think blood work is one step of that.
Oftentimes patients have to advocate for themselves when, when, when that happens.
[00:07:54] Speaker C: Yeah. Well, now I want to ask both of you your personal connection to blood cancer. What brought you to the work? What brought you to Blood Cancer United? And when you're sharing both of your stories, I'm wondering if you can address that exact point. What were the symptoms? What was it that brought you, and how did you guys advocate themselves? So, Alyssa, I'll ask you to go first this time.
[00:08:15] Speaker A: Yeah.
[00:08:16] Speaker D: So I was diagnosed with acute myoid leukemia, or AML, at 34 years old.
AML at the time had a 26% survival rate. Overall, it's about 30 now.
I was very lucky with a particular gene mutation that reacted very well to the standard of care treatment, which is a chemotherapy regimental. And I found out I was diagnosed in June. I probably the previous October, I started getting night sweats and that was my first symptom. Now my doctor will, will dispute this and he's like, I don't know if this was because of aml, but I am sure in my head because it just, it just kept expanding from there. So by January, I started to get very painful bloating.
Now I have ibs and so bloating is, is not abnormal for me. So I was thinking I having a flare up, it's not going away. I don't know what's going on. And so I contacted my gastroenterologist and I said, hey, I really need to get this checked out. Like, it's really painful at this point.
And I went into the gastroenterologist and she did, she kind of went over a bunch of stuff, you know, over the counter stuff to take. And then right as she was leaving, she was like, you know, let's Just do a blood test. We'll check for celiac disease or thyroid disorder. Maybe something is causing the bloating. And I'd also been gaining weight pretty rapidly, even though I was training for a triathlon at the time. I was eating really healthy. And I'm like, I shouldn't be gaining weight like this.
And, and the blood test came back with my white blood cells were low. And so that eventually got me into more testing with my primary and then a hematologist and, and then when, five days before a planned Europe trip, I had a biopsy and he had told me it's either leukemia or Sjogren's syndrome. And he told me the, the, the details about Sjogren's. And I'm like, that just doesn't really fit any of my symptoms. And so I kind of knew at that point that it was probably leukemia. But I'd asked him about it. He's like, there's so many different types of leukemia. I couldn't even give you any information if it is leukemia, what the treatment will be, what the plan is. And so he's, he was a little nervous with me going on the trip, but I'm stubborn. And so I was going to go anyways. And so I went with antibiotics and, you know, all this, you know, instructions for almost kind of COVID Instructions, so wipe down everything that you touch and you know, do this and, and have hand sanitizer all the time and be using it because my white blood cells were very, very low, so I had a very low immune system. Going on this big Euro trip, and then I was doing four cities in four countries, and my second city was Lisbon, Portugal. And I woke up one day to an email that said, you have AML and you need to come home.
[00:11:21] Speaker C: And so really, they actually, yeah, they told me to come home. Wow.
[00:11:25] Speaker D: Yeah. So you need to come home. Because AML for a, for a person under 60 is considered a medical emergency.
And me being the stubborn person that I am, I was like, listen, I've got eight days left of my trip. Can I just stay?
The poor doctor. And he's, you know, it was 2:30 in the morning back home then, so I had nobody to talk to. And so I just wrote back the doctor. I forwarded the email to my parents and, and a few friends and told them about it. And, and so, you know, he wrote back, of course, and he was like, no, no, please come home. He's like, you're. I can't tell you how bad your immune system actually is, right? Now, but it's bad. I can't have you getting more sick over there. And by that time, my. My legs had actually swollen up. They'd never went. It never went down from getting off the plane. And so I already knew, you know, things weren't going well. And I'd already had, like, a couple of mosquito bites that were. Looked like they weren't getting infected. So he was like, I need you to take this, the antibiotics that I gave you and try to get a flight home. And I was flying to Norway that night, and so I did not want to fly in at, like, 11:30 at night and fly right back out the next.
So I waited a couple extra days, which I just wouldn't recommend to people to do. Just right off the bat disclaimer there. But I was stubborn. I was in my 30s and loving life, and. And so I got a flight home. I was diagnosed on a Wednesday. I flew home Saturday.
And they had. I'd already been connected to my doctor by email, which was very weird for everybody involved because they're like, we're. We don't know why you're. We're writing you over email, but we hear this is our only option, so please come home. We'll get you a blood test the day after you come home to make sure you're stable. And then I could go in on my doctor's consulting day because he's. He's a researcher, so he's only in one day a week. And so I went in and started treatment, and I finished in December of 2016, so I'm now 10 years out in December.
Thank you. So it'll be a big celebration in December, and I'm excited.
But, you know, I started with lls, which is now Blood Cancer United at a year and a half in remission, and because I just felt like. I felt like I was missing my calling after about a year after treatment ended. And while I want to make it clear that not everybody has to feel like they have to have a purpose in this, because I know that that puts a lot of pressure on cancer survivors, and you don't have to feel like that. But for me, I felt like that, that I needed to do something in the cancer space.
And so I signed up to be a volunteer. And the week after I finished volunteer training, a job for a fundraising campaign or Light the Night Walk came open. So I started with that, and then I moved to the mission side for patient education in 2020.
And, you know, I really wanted to be on the mission side because, you Know, cancer treatment and survivorship is really hard.
It's traumatic for people. And I felt like I had to find a lot of stuff by myself. I had to find where to get wigs. I had to find covers for my PICC line.
You know, I had to figure out how to shower with my PICC line and, you know, found easier tools to do it.
And I, you know, I didn't realize until, you know, I kind of almost hit rock bottom that I needed mental health support as well. So I needed therapy. And so I had to figure that out for myself and go and seek it out. And a lot of people, you know, you don't know what you don't know. Right. You don't know that resources are out there available for you that will cover your exact issue that you're having. And sometimes it's even hard to recognize that issue that you're having.
So, you know, I. My goal with working for Blood Cancer United and working with patients and caregivers is to help make it easier, make this whole cancer experience easier for everybody that has come after me.
[00:15:31] Speaker C: Wow. Thank you for sharing that, Tricia.
[00:15:34] Speaker A: And just to share how stubborn Alyssa is diagnosed with aml, they generally say, go to the ER immediately. You must be admitted to the hospital immediately. So if that gives you a little.
[00:15:47] Speaker C: It's a little context.
[00:15:49] Speaker D: Yeah. I think, I think one reason why they may not have is be at the time of my very last blood test, right before I left, my red blood cells, my plate with, were still okay. So I think, like, at that time, I hadn't tanked. But then they're like, what else are we supposed to do? Because they didn't want me to get treatment over there. They're like, get back to the United States, please. Anywhere in the United States, Just get back here.
[00:16:13] Speaker C: Oh, my gosh.
[00:16:17] Speaker A: So I was diagnosed back in 2002. I was 32 years old. My wife and I were thinking about something, starting a family.
I had just been offered a new job and was very excited about where that might lead.
When I received my cancer diagnosis, like almost everyone else, it completely stopped my life in time, in that moment, it froze everything.
I could not accept the job offer because that would have meant that I had a pre existing condition and would not have been able to get insurance coverage. So I had to stay in my current role that I was in at the time.
I had to stop thinking about starting a family and start thinking about surviving.
And so it changed everything for my wife and I and how we moved forward in the world from that Moment on.
As I mentioned before, symptoms can be very general.
Yeah, I had been fatigued for quite some time, but thought, I'm working too hard. I'm not eating well, I'm, you know, not sleeping enough.
And then we went on vacation, and we'd been out in the sun and swimming, and I developed a rash all over my body. And it had just. It was everywhere and very itchy by the time I come home, went to. To my gp.
They prescribed a round of steroids, which I took it, suppressed it in a very minor way, but the rash almost immediately came back.
They tried another round of steroids that wasn't working.
And then during that time, I traveled to a retirement party for a friend at a nonprofit, another nonprofit organization.
And when I came back, I went to sleep because I was tired from the travel. Came back, woke up the next morning, and the lymph node on my neck was just huge.
And I was like, overnight. That's weird.
[00:18:26] Speaker B: Wow.
[00:18:26] Speaker A: Back to my gp, and he said, you know, I'm concerned about that. I'm concerned about this little cough you have. It was like, I said, oh, yeah, I'm just tired. I'm working too hard. I'm probably getting sick, you know. And so he happened, unlike many GPs, to have an X ray machine in. I mean, this was many years ago, to have an X ray in his office. It was a definitely old school X ray machine, but it took an X ray and right in the center of my chest, what was a butterfly size shaped mass right in the center of my chest. And he said, I can't say what this is definitively, but I want you to go see a specialist.
And so initially they sent me to a pulmonologist because they thought it might be sarcoidosis. A lot of that differential diagnosis like Alyssa was going through with Sjogren's, and. And they had me do breathing tests that wasn't. That didn't show anything other than my breathing was definitely suppressed by something.
And then they sent me to an oncologist for a lymph node biopsy.
They ended up pulling that entire lymph node out of my neck.
And when I was driving to work meeting, I got a call from the surgeon's office asking me to pull over on the side of the road. And that is where I got my cancer diagnosis.
So I obviously didn't attend my work meeting, went home, talked to my wife, talked to my family, and had to make some decisions about moving forward.
Luckily, less acute than Alyssa's situation. Hodgkin's is more slow growing.
And so I was stage two.
So we had some time to put a treatment playing together, but we never really had anyone talk to us about fertility, even though that was what we were kind of planning for in our life in the moment that kind of went to the wayside. We didn't think to talk about it because we were like, oh, cancer. And no one. No one talked to us about it.
I don't know why.
Whether it's because they didn't recognize that that's something that we would want moving forward or because it just wasn't thought of to talk about it as much as it is now.
But yeah. So it really kind of threw us for a loop. And we regrouped. I went through treatment, chemotherapy and radiation and completed treatment and was in remission and have been ever since. I'm really interested in eternally grateful for every single day since that.
Since that remission day.
And three years after being diagnosed, I was able to give birth to my son.
And.
And we. And he's 20 now, so we've had many of celebrations of birthdays and anniversaries and milestones that I'm really grateful for it very much.
That experience very much played into the break I took in work after having my son and the very intentional way I sought work after I was ready to go back.
So I had been volunteering for then lls now Blood Cancer United at the Light the Night Walk, which is the campaign Alyssa worked on.
And I had also been in 2003.
Well, I guess it was in 2009, after I'd had my son sort of recovered from that and everything.
I started with team and training, which is an endurance event fundraising arm of our fundraising efforts here at Blood Cancer United.
So with that, I started getting into endurance events like marathons and cycling and triathlons and all of that kind of thing.
But I really wanted to work here.
So I kept asking. I kept asking how I could work here. And so I was able to interview for a position, ended up getting a different position.
That landed me ultimately as the patient community, community outreach manager for the state of Georgia. That allowed me to build relationships, not only externally across communities across the state, to inform people about the amazing resources and services we'll talk about, but then also internally, which led to the opportunity to land in our national patient and professional education programs, teams with Elissa and others.
And I now direct our online patient and caregiver community, where I get to work with patients and caregivers every day, seeking the same things I was looking for and leading our national adolescent young adult outreach efforts.
[00:23:35] Speaker C: Wow. Both of you. I mean, so you're both in your. In your early 30s.
[00:23:42] Speaker D: Diagnosis.
[00:23:44] Speaker C: No, no, at diagnosis. That's what I meant.
[00:23:46] Speaker D: Oh, yes, yes, at diagnosis.
[00:23:48] Speaker C: Yes, at diagnosis.
I was. When I was diagnosed.
Well, maybe you'll answer. I won't. I'll hold this question because you might actually say this when you talk about Blood Cancer United. So, Trisha, what. What can you say more about Blood United? Blood Cancer United itself, its mission, its history, organization, how it's evolved. I mean, you've already alluded to it, that it used to be LS lls How has that all come about?
[00:24:19] Speaker A: Yes. So the Leukemia and Lymphoma Society was the Leukemia Society.
We've evolved through many different names. We were founded in 1949 by the de Villier family.
The parents had lost their son Robbie to leukemia, and their vision went far beyond how do we connect with other families? It was really, how do we improve treatments so other families don't lose their children to blood cancers? And so we've always had, from our foundation and beginnings, a mission that has been both support, education and research improving outcomes for blood cancer patients.
And so our mission statement is exactly that, to cure blood cancers and improve the lives of patients and their families.
And our goal is to help families do exactly what I was able to do, which is celebrate more milestones, more birthdays, more anniversaries, more events in their lives, more every day, more working and, you know, all of. And having fun and going on vacation, all of those things.
That's really where we came from. And that's why our name changed in September of.
Of 2025, because we recognize that the Leukemia and Lymphoma Society captures leukemia and lymphoma. But as I mentioned in the beginning, beginning, there's over 100 types of blood cancer in various categories that weren't captured in that name. We wanted every blood cancer survivor in their family and the healthcare professionals working with them to know that we are here for all blood cancers, not just leukemia and lymphoma. So that was really key. And so we have evolved, but our mission stays the same. And that really is, how do we continue to fund, support, and promote research, both translational research that turns ideas about medicine into medicine that works and health outcomes research or health services research. What's the impact of all of that on the family, the patient, the caregiver? And how do we help them improve their survivorship and navigating through survivorship?
So that's that's how we came to be. That's where we are now.
And we continue to move forward with those goals in mind.
[00:27:05] Speaker C: You've mentioned. I mean, families are involved. No matter what stage are blood cancers, do they affect younger people at a higher rate and therefore, I don't know if higher rate is the right answer or right question. And it may be different for lymphoma versus leukemia or whatever it is.
[00:27:23] Speaker A: Okay, you hit it on the head. It is different depending on your diagnosis. Certain diagnoses we.
Certain diagnoses are for. Of blood cancers happen in children.
Acute lymphoblastic leukemia, acute myeloid leukemia.
Those are, those are the type we see more leukemia in children. They can get other. They can get lymphoma and other diseases that we see, but not as frequent.
Young adults tend to have more Hodgkin's lymphoma, but they can also have non Hodgkin's acute myeloid leukemia, acute lymphoblastic leukemia.
We have also recently seen more adults diagnosed with myeloma, which. And chronic myeloid leukemia and chronic lymphocytic leukemia. It's rare, but they are getting diagnosed. These are diseases we often don't see until people are in their 70s or 80s.
[00:28:22] Speaker C: Wow.
[00:28:23] Speaker A: So it's very unusual to see those kinds of blood cancer diagnoses in young adults, but we're seeing it.
[00:28:29] Speaker C: Yeah.
[00:28:30] Speaker A: Why? We don't necessarily know.
So some you just certainly do by, by numbers definitely see more often in young adults.
But truly, blood cancers, from birth, throughout the lifetime, they can be diagnosed.
[00:28:52] Speaker C: Alyssa, I want to ask you more about the education resources, social support, I mean, specifically related to young adults, but obviously anyone who has it, but that are there to help people that are affected by blood cancers.
[00:29:06] Speaker D: Yeah, of course. So the first of course that I wanted to mention is the people that you call, if you call the 1-800-number, our information specialist, these are, you know, master's level social workers and oncology nurses, oncology nurse navigators. They know so much about blood cancer than I could ever hope to know. I mean, they're incredible. And they have up to date accurate information. They're always learning the new things coming out. So I always recommend that patients, care caregivers too, call our information specialist and go through what your. What your diagnosis is, you know, any information that you have, and they will help guide you through to make sure that you're not only getting accurate information about your disease, but also what resources are available to you. If we could connect them with Financial assistance or clinical trial support or, you know, any diet, dietitians, any other resources that are available to them.
And so that number. Because I always know it because I have our, I do. Our podcast is 1-800-955-4572 for patients and caregivers. Again, please call them.
We also have our clinical trial support center. Those. If you're looking for a clinical trial or just looking into it at any point after diagnosis, want to make clear that clinical trials are not just last resort, which I feel like a lot of people think you can do it anytime after diagnosis and see if there's a clinical trial that's right for you. So they'll talk to you about your situation and get all your, get all your information and look for clinical trials around the country that you might qualify for and see if there's something that would be a good fit that they would be able to get you into. And I believe the touch points are like 20 or 30 touch points sometimes with the clinical trial nurse navigators. They're incredible. And so, you know, they'll.
[00:30:59] Speaker C: What do you mean? I just want to clarify that. What do you mean, touch points? Like what?
[00:31:03] Speaker D: So they'll, they'll talk to you, talk to you, you talking email, you know, just those communications touch points and how many times that they're talking to you throughout this entire process. So it's not just like one phone call, right? And then they're like, oh, I just found a bunch of clinical trials here. Here you go. And so they're really, they're really guiding you through. And the benefit of the clinical trials, even if there's a drug that works really well, is that you might be able to try a new drug that's not out on the market yet that could be the one that works, right?
I mean, we've seen that with Gle, with chronic myeloid leukemia, that was just an incredible drug for a disease that was, had like a three to five year survival rate. And now people are living full, long lives with an oral pill every day. And so you have those amazing clinical trials that, you know, patients have the opportunity to potentially be a part of and get a new novel drug.
And then in addition, we have our blood cancer conferences. That's a great way to get educated. We have a large virtual one and then we have ones around the country. I actually, actually went to my first one, the Northern California Blood Cancer Conference in January. It was in San Francisco, and it was incredible. Just so many different sessions from treatment to diagnoses and survivorship. Issues and also a way for patients to really connect with each other and caregivers also. So you can look up, look up that our blood cancer conferences and then we're getting into the support side as well. So we have peer to peer support. So you can be matched with somebody with your diagnosis, diagnosis, hopefully within your age group if there's, if there's somebody on mentor within your age group. So somebody who's been through it. And I have found, just as a patient, and I'm sure Tricia could say the same, that it was so important to be able to connect with other people with my disease. And it was really helpful to see, you know, people that had gone through the same treatment and had similar experiences. And so it's our first connection program.
Again, you'll get matched with somebody. And then we're also looking for particularly young adults to be the mentors. If you've already gone through this, to be that person that somebody can talk to and you can kind of guide them through. They're scared. They've just been diagnosed or maybe they're early on in the process and they just need somebody who's been through it.
And then we have our online community, which is all Trisha. She runs that. It's kind of like a social platform like Facebook for blood cancers. I think it's so much fun. They have daily questions and then they have groups within the community as well that you can be in the caregiver group or be in a particular diagnosis group.
And so you can again, like pose a question to other people in that group. And, and it's a great way to just again, connect with other people.
We have our online chats, another way to connect with others. So we have a young adult chat, I believe it's on Tuesdays off the top of my head.
But it is moderated by an oncology social worker. So there's no crazy stuff going on in the ch.
So you can know that it is a safe place. And you can also, you know, if you need to chat with a social worker privately if there's something going on and so, and again, great ways.
We have educational information in addition to our information specialists.
So we always want to make sure that we can get you very accurate information because you can find about anything on Google and you know, it's dangerous.
So we want to make sure that we always have accurate and up to date information available. So we have booklets, we have fact sheets, and then of course we have our website as well so you can read more about your disease. You can read about the treatments and, you know, what signs and symptoms that are common.
So a lot of good information on there. You can read about the treatments, like car T cell therapy is kind of the big buzzword in the cancer world now, and people want to know more about it. So we have information about that so you can learn more about. And our goal with patient education in particular is to educate patients and their caregivers about their disease and about treatments that are available so they can go back to their doctor and say, hey, I heard about this. Would this be good for me?
And we want them to feel empowered to be able to go back and talk to their doctor and have open communication. We call that shared decision making. So they're deciding on the treatment that works for them together, and they're not just a passive participant in their cancer treatment. And so we really want to encourage patients to talk to their doctor and have that open communication, and hopefully they'll learn things from our programs and be able to go back to them and. And ask if that could be the right treatment for them. Or, hey, I heard about this symptom and I didn't even think about it, but I have this. Or I have this side effect. And so really good information for the patients and accurate information.
We also have registered dietitians, so we have free nutrition consults, and that's actually for any cancer. So if there's other cancers listening, we do have that available.
And the. It's just a short consult. And then they'll give you, you know, send you some materials to be able to kind of help. Help get that. That started so that people can feel nourished during the treatment and get through a little bit easier.
Yeah, and then we have a lot of stuff for kind of what I've been doing on my team, the patient education team, our podcast that I mentioned before, we have an audio and a video podcast, whatever flavor you would like. And we talk about treatments, we talk about diagnosis specific, and then also survivorship.
And same with videos. We have patient videos of all different lengths. We have our how do I Videos that are three minutes, three to four minutes. And those are short videos covering a single topic, like how do I find and wear a wig, how do I find survivorship care, how do I find a therapist, how do I exercise? So a lot of different things that patients can learn. And again, short little bits to deal with the shorter attention spans and have that. Have that little bit of information that they can find very easily.
And then we have other patient videos, again, talking about the disease, talking about survivorship issues like grief and loss, talking about side effects, talking about, you know, mindfulness.
And then we have our webcast lastly, and that is we do regular webcasts again on diagnoses or on things like car T cell therapy or certain type. We're about to do a virtual lecture on biomarker testing. So things like that that patients would be able to learn about and again, hopefully go back to their doctor. And then I do want to put a plug in. We just for our young adults listening, we just put together this year a be kind to your mind wellness box. And it's so fun. There's lots of goodies in there and also some just tips on, you know, breathing exercises or grounding exercises, things to kind of just get you through those bad days, because we all have those bad days. And it's hard when you're a cancer patient or in survivorship as well. And so a lot of fun stuff in there, from, you know, fidgety stuff to a beanie and great stuff. They can actually get
[email protected] be kind to your mind. And they can go that website and get that ordered and sent right to their door. And it's. Of course it is. Is completely free. So those are. I know we. I know I shared a lot of resources there. Just go to our website, bloodcancerunited.org There's. There's different tabs there. And then most of the stuff that I listed is under the resources tab. So very easy to find that information. And of course, if you're a patient, there's a patient tab if you'd like to find more information about your particular disease.
[00:39:19] Speaker C: Yeah. What I love is the, like you said, it empowers the person, whoever it is, whether it's the person with cancer or the caregiver, to take charge. They have information there that they can then take, that they can learn from themselves, maybe share with family. But like you said, go to their doctor. I mean, that gives them such power that, that, I don't know. That was always as readily available, at least not that it wasn't there. And don't trust Google. Go to blood cancer, we always call
[00:39:53] Speaker D: it on the podcast, Dr. Google. We're like, don't go to Dr. Google.
[00:39:59] Speaker C: No.
[00:39:59] Speaker D: Yes. And I do want to point out one more thing, is that we also have caregiver support as well, because being a caregiver is really hard. And so we want to make sure that caregivers are getting resources as well and feeling supported as they're dealing with navigating work while they're taking care of their partner or their family member. I mean, they're. There's so much that goes into being a caregiver. And we want to make sure that self care is also really important for them as well.
[00:40:26] Speaker C: Definitely. And I know there's one other resource that you guys have which is financial assistance, because cancer is not cheap.
Right. So what else?
And Alyssa, I'll just let you keep going on this.
What can you guys provide?
[00:40:43] Speaker D: Yes, absolutely. So we have many different forms of financial assistance, from patient aid to travel grants to copay assistance.
I'd really recommend because sometimes, sometimes funds will open and close, depending on what funding we can get. And so I'd really recommend to go to bloodcancerunited.org finances to be able to look to see all the different ones. And you can also call an information specialist to see what is open and what you might be able to qualify for.
Because we really want to make sure that we're having various options available for the patients to at least provide some support, even if it is just, you know, a transportation, a small transportation got grant or to help with some extra bills. And we also did, we recently did on our Bloodline podcast, a finances podcast that has a lot of different advice for patients.
So that's, that's our finances area. And then we also recognize that college can be very expensive and a lot of young adults are diagnosed maybe as they're about to go into college or maybe they're in college and they've had to take a break. And as they're taking a break, it's just getting more expensive. So we actually, we do have a scholarship.
It opened up on August 3rd and so definitely look to get the application in. It is up to $7,500 for the year. And you just have to have been diagnosed at 25 or younger. So this is for our, our young adults and adolescents.
And then it can be used for virtual or in person undergraduate programs, but that also includes trade schools.
So whatever you would like to go into, we do have that scholarship program. And so I really encourage people to apply.
And that's
[email protected] scholarship, so very easy to find.
Lastly, we have a newer medical debt case management program, so they have counselors that you can call and talk to. And it's really one on one support to identify the needs that you may have financially and direct to resources. So we have wonderful partnership with groups that will help with medical debt. They can also the counselors can also kind of guide you through with tips on how to deal with your particular situation.
But the one thing I really want to point out is we really also want to prevent medical debt in the first place. And that can be with finding the right insurance for you.
So you can call them. I know we have open enrollment coming up in October for most people, whether it is with your job or, or if you are on Medicare or if you, because some young adults are on Medicare, if they have been on disability for a couple, two or more years, or if they are just on the healthcare marketplace. So we want to make sure that patients have the right insurance. So I'd really recommend. And calling early. So it is September. Give, give them a call and go through your particular situation. They're not only looking at premiums, but they're also looking at making sure that your medications are covered, making sure you, your doctors, your current doctors are covered, which is so important.
So you don't have to switch because nobody wants to switch doctors in the middle of their treatment because their insurance didn't stop covering it.
So they're looking at all of these things and they're also looking at the deductible, of course, as well. So they're, you know, I, I can think back to my own experience that when I got onto the marketplace, I had to choose a plan that had the lowest deductible because my monthly blood tests were all out of pocket. They were all against the deductible. So insurance and they were 350 a pop.
So I had to make sure I had a low deductible. So I hit that as soon as possible.
And then insurance would pick up and start covering the majority of each of those blood tests. So they're looking at those kinds of things as well. And so I'd really recommend that patients are calling and contacting them. You can find more information again at our website, bloodcancerunited.org medical debt
[00:45:08] Speaker A: I'll share.
[00:45:09] Speaker C: They just need to go to your website. I'm sorry. Go ahead, Trish.
[00:45:11] Speaker A: Hey, I'll share story that our organization recently shared about a young woman who really living paycheck to paycheck, never making a dent in the thousands of medical debt that she had. And she called our medical debt case managers and they don't relieve your debt. That's not, that's not their role. Their role is to really deep dive, investigate with you in where that medical debt is coming from and what might be out there that might help pay for that, that you're not even aware of. And that's exactly what happened for this young woman.
She had a pharmaceutical company credit for the treatment that she was receiving that had never been applied to the outstanding balance that she owed. So not only did it take care of that balance, she then could move on and not live to pay the medical debt. She could live to live her life. And so that's the kind of impact that that type of programming is making.
[00:46:13] Speaker C: Well, and who would ever know, who would even think that there might be some kind of credit out there that you're not taking advantage of? And yeah. Yeah, that's a great.
[00:46:23] Speaker D: Once again, you don't know what you don't know.
[00:46:24] Speaker C: Exactly.
[00:46:25] Speaker D: So if you don't know something's out there, how do you even begin to think about looking for it?
[00:46:30] Speaker C: Yeah. Wow. Well, I wonder if there's anything else that I haven't asked you guys that you would like to share. I'm going to ask, give both of you a chance to respond.
I want either either for a caregiver or for a. Or someone who has been diagnosed either way.
[00:46:46] Speaker D: Yes.
[00:46:47] Speaker A: I mean, like Alyssa said that we do have a caregiver workbook and caregiver worksheets and things caregiver online chat support for caregivers so that they can have a space to refuel themselves, to educate themselves, to inform themselves, so that they can be the best version of them, to help the patient that they're supporting every day.
And we have several caregivers caregiver spaces in my online community as well.
I did want to give a shout out to a couple of teen resources for the adolescent part of adolescent, young adult.
We have two teen guides, one hot off the presses. The first is really about all things cancer, from managing relationships to what do you take to your infusion session. The second second is really about what's next as an adolescent moving into independence and young adulthood. Things like insurance, things like intimacy, things like relationships. How do you manage those?
Moving into a college environment or a work environment.
And that really covers that next stage of life for teens as they move out of teens and into young adulthood. So I wanted to give a shout out out to those two great resources, one of which literally just launched.
[00:48:19] Speaker C: Great. Thank you, Elissa.
[00:48:22] Speaker D: Yeah, I know we mentioned a lot of resources. There's one thing that we haven't mentioned yet and that is our advocacy and public policy arm of Blood Cancer United. And I feel like that's so important because this is a way that you are able to share your voice and share your story of what is going on with your legislators to make public policy change happen.
So we've had a lot of laws change because patients have stepped up and shared their story. I could look, I, you know, I'm in Oregon and I could look at what's called oral parity laws, which started here because of that drug that I mentioned earlier, Gleevec, because it was an oral, essentially chemotherapy drug. And insurances weren't covering it because it wasn't in an infusion in the center. And so we had patients step up and doctors and healthcare professionals and advocates around the country and said that, hey, we need to make sure that this is covered. And they started writing laws in different states, and Oregon was the first, and then it just kind of moved on from there. And so not only we're working with state governments, but also federal governments as well. We just had a pediatric law passed so that children can get. Have access, you know, no matter what state they're living in and what insurance that they have that they can cross over to a different state to make sure that they can get access at the nearest children at the best children's hospital.
And, you know, a lot of different things. And of course, we have the recent things with Medicaid and losing the premium, enhanced premium tax credits. And, you know, if your premiums are going up, if you're on the marketplace, please speak up, share, write letters to your lawmakers. We make it really easy on our website. Again, it's blood cancerunited.org advocacy.
So you can go on there. You can even just do a text. You know, those texts where you just put in the number and you'll get text messages and you can very easily shoot off a quick email to your representative. So we'll get your zip code and your address and find out what, who your representative is, and it will just send off a quick email for you. So I usually write in, you know, a few. A few personal things about my story, and then I'm able to send off a really easy email to people. But then we have advocates going to state governments, going to federal government on lobby day that we do every year, and talking, talking to their own lawmaker. And so they can really share their stories. So they're not just. Just a number on a page. They're a person with a unique story. And you'll see if you watch congressional hearings, that they're bringing up these kinds of stories. The lawmakers are saying, hey, I talked to Jane the other day, and this is her exact situation, and this is how she is suffering. This is how she needs help. And we need to pass this law to be able to help people like this. And so our advocacy arm is just absolutely incredible. And so I'd always recommend for patients and caregivers to get on there, share their story, and make sure that they are being heard and that we can get public policy passed throughout the country and the states that is really helping blood cancer patients to make cancer treatment more accessible, to make it affordable.
And, you know, it just is so, so helpful.
So that's what I would say on the advocacy front. And then I just, you know, kind of want to finish off with reminding patients out there and caregivers that you're. You're not alone in any of this. We are here for you. We. We want to help you in any way. If you ever can't find a resource that you need, please reach out to an information specialist and they can connect with us and say, hey, we've had some people call in and they. They want this. This information, and we can create it. So we. We really want to make sure that patients are having the resources and they're not having to, you know, search for things on their own, and they're also having it right in front of them so they can see something on the list that they didn't even think about, but that would affect them and make their life easier as they go through treatment and into survivorship. You know, it doesn't matter if you're 20 years out. Mental health issues can still be a thing.
And. And also, you know, your feelings are very valid if you're having bad days.
Know that, you know, it's okay. It's okay to have the bad days. I hope that tomorrow is a better day, but it is okay to have the bad day, and it's okay to give yourself, you know, some. Some grace with that, because cancer is really hard.
[00:53:12] Speaker A: And there's.
[00:53:13] Speaker C: Yeah. Oh, sorry, go ahead.
[00:53:15] Speaker A: There's no limit to the number of times someone can call our information specialist.
So at any time, as Elissa just said, from the day of diagnosis, a year later, five years later, 10 years later, they can come back to us.
That's how our relationships are built with patients, caregivers, and healthcare professionals. We have a whole team dedicated to supporting and educating healthcare professionals as well, because they're the ones who are working with our patients every day.
So our information specialists are really that one spot that anyone can go to at any time, as Elissa said, and get that resource, that information, that piece of education that they are looking For.
[00:54:03] Speaker C: Yeah, I love how easily accessible things are. I mean, what you just said, Alyssa, about the emailing, your. Your representative. I think a lot of reason people don't for any issue, whether it's cancer or otherwise, is because you don't have to come up with the whole letter.
[00:54:18] Speaker A: Right.
[00:54:19] Speaker C: So to make it that easy. And then in addition, the links to, you know, these booklets or the videos or those things. So having everything so easily accessible, I just think is. Is wonderful.
[00:54:29] Speaker D: Yeah. Because we also realize that people learn differently. Right, so.
[00:54:33] Speaker C: Exactly.
[00:54:33] Speaker D: People learn best by reading. Some people learn best by listening. Some people learn with shorter videos or longer videos. Some people like the hour and a half webcast. They're. They're full of information, packed full of information. And they have a Q and A there and they are wonderful. So I don't want to say that, but.
But, you know, they. We have information for everybody available.
And, you know, we just want to make sure that however you learn, however you best learn, we want to make sure that we have that stuff available for you.
[00:55:03] Speaker C: Yeah, definitely. Well, thank you both so much. Thank you for sharing your stories. I think hearing what you both went through and how that brought you to your careers is inspirational. I just think that that's a really key part of seeing why this is so important and why you're fully 100% behind what blood Cancer United does. I just think that's great.
Very important question that I always end with marshmallows over a campfire.
Slow and steady or flaming crispy? Trisha, I'm gonna ask you first.
[00:55:35] Speaker A: I'm slow and steady all the way. I like to get it super gooey on the inside so it makes a perfect s'. More.
[00:55:41] Speaker C: Exactly.
[00:55:42] Speaker D: Yep, I am flaming crispy. That sucker is going right into the fire and it is burnt, burnt, burnt quickly. And then you have the yummy goodness inside. So, you know, mine, mine is fully black. If it is not fully black and on fire, it is not done.
[00:56:01] Speaker C: I love it. I love this. This question provides the best answers because people very passionate I have found about their marshmallows and the way they are cooked.
Well, thank you both so much. For those of you listening, please do go to the website. Call that number. You are not alone. There are people out there who can help you. So to the rest of you, until the next. Next time we gather around the campfire, keep living beyond cancer.
[00:56:27] Speaker A: Thank you, thank you,
[00:56:35] Speaker E: Thank you for listening to this episode of Campfires of Hope, Living Beyond Cancer. For more information about Epic Experience and our programs or to donate, please visit our
[email protected] Music for this podcast is provided by Moonshiner Collective. If you enjoyed this episode, please rate and review. View us so we can share our story with more people. Also, be sure to subscribe wherever you get podcasts so you'll know when new episodes are released. We hope you come back and join us for our next episode.
