The Power Transformation Podcast

117. From Loss to Legacy: Liver Cancer Awareness & Advocacy with Andrea Wilson Woods

• Alethea Felton • Season 3 • Episode 117

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In this profound episode, Andrea Wilson Woods shares her deeply personal journey of resilience and advocacy, inspired by her sister Adrienne's courageous battle with primary liver cancer. As the founder of Blue Faery: The Adrienne Wilson Liver Cancer Association, Andrea reveals how Adrienne's humor, passion for music, and unbreakable spirit shaped their bond and her mission to support liver cancer patients and families. She discusses the importance of "realistic hope", honest patient-provider communication, and how Blue Faery is making vital resources accessible to diverse communities. Tune in to hear how Andrea turned heartbreak into purpose, creating a lasting impact through advocacy, education, and a commitment to honoring Adrienne's legacy.

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Episode 117's Affirmation:
I create an atmosphere where people feel valued, supported, and encouraged. 

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Alethea Felton:

I have some exciting news for you. I truly do. But first let me welcome you to the Power Transformation podcast. I am your host, alethea Felton, and if you are new to this show, welcome. I am so glad that you are here with us today and, for those of you who have been with me since the beginning or in the earlier episodes, thank you. It is because of you, as well as our new listeners, that I am able to continue to keep this podcast in the top 5%, and it is growing day by day. The goal y''all is, by the end of the year I want the Power Transformation Podcast to be in the top two, two and a half percent. Who knows, it could be in the top 1% of shows.

Alethea Felton:

And it's because this is a movement more than just a podcast, and we are trailblazers here and with the guests I have, they are absolutely incredible, including the guest I have today, andrea Wilson-Woods. She is phenomenal. She is a keynote speaker, a storyteller and a writer and a patient advocate who founded the nonprofit Blue Faery, the Adrienne Wilson Liver Cancer Association. She did this in honor of her beloved sister, and I personally know people who are living with liver cancer and, as many of you know intimately with myself. While I do not live with liver cancer, I have had liver disease ever since birth and I'm thriving, thankfully. But so many people deal with liver issues throughout their lives. And this incredible guest she has made it her mission to not only educate people on liver cancer but to support people so that they can continue living their best lives in spite of what they are experiencing. Her mission is to prevent, treat, cure primary liver cancer through research, education and advocacy and so much more, and she has such a journey and a story that we are going to jump into.

Alethea Felton:

But the exciting news is that, beginning in February, I am going to release two episodes of the Power Transformation Podcast each week. I don't know if this will be permanent, but I have such a high demand and a wait list of guests who want to be on the show as well as episodes that I need to release, and so I am going to launch two episodes per week on my audio platform on Tuesdays and Thursdays, and also I'm going to just put it out there. Soon, and very soon we will also be on YouTube, so you will start to see videos of several of the podcast episodes. I already have a channel out there, and that is coming very soon, so stay tuned, as well as other announcements that I am going to be making in February. A lot of things are happening. It's going to be an incredible year and you are a huge part of that.

Alethea Felton:

So let's jump into this episode. I'm going to start with our affirmation. I'll say it once and you repeat it repeated I create an atmosphere where people feel valued, supported and encouraged. I am so thrilled to have Andrea Wilson-Woods here on the Power Transformation Podcast. Welcome to the show, andrea.

Andrea Wilson Woods:

Thank you so much for having me.

Alethea Felton:

It is my honor and pleasure, and the work you are doing is absolutely phenomenal, and so I am so glad to have you here as a guest. We're going to jump right on into it, but first I always like to start with a fun icebreaker question, so that we can get to know you better and learn a bit more about yourself.

Andrea Wilson Woods:

Okay, I know about your icebreaker questions. I know, okay. Okay, I did a little research, lady.

Alethea Felton:

Okay, so this is your question. Okay, when you were a kid, what was your favorite fairy tale?

Andrea Wilson Woods:

Oh, my favorite fairy tale was the little mermaid and but not the little mermaid Disney movie that was the original one, the original little mermaid.

Alethea Felton:

Yes, tell them about it, andrea. Tell them.

Andrea Wilson Woods:

Yes, well, I'm trying to remember, but I had these books that came with cassette tapes. Only certain generations will know what that means and it was just tragic, like it was. Just it ends in utter tragedy. I don't remember if she. I can't remember the very end. Yeah, I can't even tell you why it was my favorite, but maybe because it felt more realistic to me. It just felt like because I didn't live in a world in my childhood where there were happy endings and so it felt realistic and it was so well written. And I refused to watch the Disney version for years because I was like they're going to Disney-fy it. And you know what I liked? I actually watched it. I like it. It's really quite good. It's very funny, it's well-cast in terms of the voices and the singing, but it was the Little Mermaid.

Alethea Felton:

Oh, so I love your answer and I also love the fact that you made it clear that you liked the original, because for people out there, most of you may know but I never want to make assumptions but the original fairy tales were intended to really teach kids about reality and to teach them lessons. So they weren't happy, happy, joy, joy, glitter, sunshine and rainbows. They were quite morbid and twisted. Yes, they were.

Alethea Felton:

As positive of a person that I am. I actually like that kind of stuff where it's realistic, where it's an ending that you don't really think about, because life has so many parallels to real fairy tales. Everything doesn't necessarily it necessarily go 100% smoothly, but we can make the good out of seemingly bad situations. And that leads me to ask you, andrea, in terms of who you are, you've done so much in your life. But if I were to ask you who is Andrea Wilson-Woods, what would you say about yourself?

Andrea Wilson Woods:

I would say, because I don't like to define who I am by what I do, necessarily. So I would say that I'm a sister, a lover, a daughter, a friend and, at my core, a storyteller and also an advocate, but not just in what we're going to discuss today, but just an advocate across the board for things and people I believe in.

Alethea Felton:

Makes me to ask you this when you think of the word advocate, what comes to your mind?

Andrea Wilson Woods:

Fighting for someone or something you believe in and never backing down.

Alethea Felton:

Would you say that you've always had that spirit of advocacy in you. If you can think back to even when you were younger, prior to what led to your foundation and organization, do you think that spirit of advocacy has always been a part of you and, if so, in what ways?

Andrea Wilson Woods:

You know I do. Service is one of my core values, and I realized that much later in life. But then, you know, I look back and it's like, oh yes, 100%, I love to help people. I also think it comes with being the oldest. I think it comes from living with very dysfunctional parents very different dysfunctions, but dysfunctional parents and a very nasty divorce, and so I had to learn how to take care of myself at a young age. I had to learn how to take care of my brother and then later my sister, Um. But also, like I remember a time when I was getting severely bullied in seventh grade and what.

Andrea Wilson Woods:

What was junior high then, what is middle school now? But and, and it's, I don't think I've ever told this story in writing, yes, but I don't think I've ever told it on a podcast. And I unnecessarily bullied, and by this, this little tyrant who ran the school, and, mind you, I'm barely like I like to say I'm five, three. I'm not quite five, three, but you know, back then I don't know, I was like four and a half feet tall, whatever. This girl was like four feet tall, I mean, she was teeny, tiny, but she was this little Napoleon, like she ran a school of a thousand people and, um, and so she had, uh, a bodyguard. I mean, this is how, this is how school used to be. Folks used to be a bloodbath and she had this, this, her best friend bodyguard, who was five seven in the seventh grade, at 12 years old, very tall young girl, and who used to literally fight all her battles for her.

Andrea Wilson Woods:

And I knew that this girl was going to beat me up and it's one of the times in my life. My mother actually gave me great advice. I went home, I told my mom, I said this this fight has been set up at school tomorrow. This girl is going to hit me. I don't know what to do. I don't want to be suspended. And my mother said well, don't throw the first punch and you won't be suspended. And whatever you do, you have to go to that fight and stand up for yourself, because the bullies don't back down. And so I learned that at a very, very young age. Bullies don't back down. I just said this to a colleague and friend yesterday who's going through something tough right now, and I said that person is bullying. You Do not back down. That's right.

Alethea Felton:

Yes, oh my gosh, and that is so true. Is that bullies? Oh my gosh. That's a whole other conversation, even for you to have said earlier. And, of course, you shared some things with me offline, when we first spoke about how home life wasn't always the greatest, but at least your mom did tell you that to say, hey, this is what you have to do, because that seed was planted and I shared with you. I'm the youngest sibling, so I'm not the older. You're the baby, so I'm not the older sibling. Yes, I am. So, with you being the oldest sibling, what was that experience like in terms of how did it shape who you are today, in terms of your leadership role abilities?

Andrea Wilson Woods:

I'm the responsible one. My parents gave me an extreme amount especially my mother of responsibility at a very, very young age and the expectations from both of my parents, I would say, were extremely high of me, whereas with my brother the expectations were lower. He was a boy, I mean, he was just treated very differently and I actually think it goes back to the fact that between me and my brother, my parents had a son who died as soon as he was born, and this was back in the mid-70s, and today he probably would have been fine, but back then being born two months early is just too premature. And my brother was also born almost two months early, like six weeks early. He was due on my birthday, on August 15th, and he was born July 1st and he survived.

Andrea Wilson Woods:

But I always felt like they treated him like he was always sick and very protective of him, especially my mother, and really shielded him, whereas they did not shield me from anything, and I'm grateful for it now because it made me who I am and it made me really tough. But it was not an easy childhood to always know what your parents' problems were at all times Mm-hmm Exactly.

Alethea Felton:

And so I want to take a shift here to really get into the heart, because you have such a transformational story that not only stays with you, but it is really something that has turned into a global, global movement and a global mission. And it takes me to a name, and this is not to overshadow your brother. I'm sure that you love him too, but Adrian, let's talk about Adrian. Adrian is your sister, and I say the present tense for a reason, because I personally, as I share with you. I think that once we know someone, they stay living in some sort in us. But Adrienne is your sister, that's right. Tell us something fun about Adrienne, who was she in the physical realm? And then shift in any way that you want and share with us Adrienne's journey. That helped to spark what you do today.

Andrea Wilson Woods:

That's a lot.

Alethea Felton:

I know it is.

Andrea Wilson Woods:

Let's start with with take it any way that you want she was extraordinarily funny, very witty young woman, very dry, dry sense of humor. Could always make me laugh, still makes me laugh. Um, and right now, at the time of this recording, her favorite band, jane's Addiction, just canceled their US tour because the lead singer, perry Farrell, punched the guitarist, dave Navarro, on stage in concert. Oh, yes, oh, my goodness.

Andrea Wilson Woods:

I was making news worldwide, like it's crazy and I have so many people reaching out to me who know my story, who've read my book, who maybe even read my sister's book. And Jane's Addiction was her favorite band in the world and and she was learning to play bass guitar when she was a teenager and and before that it was, you know, drums, and before that it was, I think, recorder in elementary school, but she, it's very funny because she, she had a musical ear and she really did. I think people who are really, who are audio learners, tend to be really good at languages, which she was from a young age. She picked up languages quickly. Um, they tend to have, they can have, musical ears, which she did, and and so she was a. She was a budding musician, I mean, along with being a really talented artist and writer and you know so many other things, but she was really funny, oh wow.

Alethea Felton:

And I like people that have that dry humor. You really got to be witty to really really do that and it can go over a lot of people's head but that is the most hysterical humor and they can laugh well, say something comical with a straight face and if you aren't catching it, it'll just totally skip you and bypass you.

Andrea Wilson Woods:

And so Would you like to hear a joke, an Adrienne joke? Yeah, I was leaving the house and for the debut of a play that I had written and produced, and and I was leaving the house for opening night, and it's, it's, you know, it's bad luck to say to actors or people in entertainment, it's bad luck to say good luck, right so everybody kind of has their own thing. They say in the dance world, everybody says mared, which um? Can I cuss on this?

Alethea Felton:

Yes, which I think means shit in Russian yeah, uh-huh. Yes, it's a bear. Yeah, uh-huh, I guess.

Andrea Wilson Woods:

In the theater world people say break a leg or they say something else. But so she came up to me as I was walking to the car and now, mind you, this was 1999. So people are not all going to get this. But she did this like karate, chop motion and in the air and said Tanya Harding, oh my God, I lost it. Okay, for the younger folks, just Google Tanya Harding, 1994.

Alethea Felton:

Yes, google Tanya. I was just about to say that that's a whole other episode. Please, y'all, if you don't understand Tanya Harding, t-o-n-y-a-h-a-r-d-i-n-g, google it and you will understand. That is hysterical.

Andrea Wilson Woods:

Isn't that funny. And I shared it with my actors and like it became a thing with people who worked with me. Like everybody started saying it, and even today my partner, because he knows my story so well, although he wasn't there for it. Even now today, like if he knows if I'm nervous about something or worried, he'll say he'll just whisper Tanya Harding, so that is so funny.

Alethea Felton:

It really is funny. Oh yeah, y'all that is hilarious. Okay. Oh yeah, y'all that is hilarious. Okay. And if Tanya Hardy happens to be listening, we don't want no smoke, it's just a joke, okay.

Andrea Wilson Woods:

Oh yeah, you know, I think she'd have a good sense of humor about it. I do.

Alethea Felton:

I think she would, and the same if Nancy Kerrigan's listening. Just a joke, you know.

Andrea Wilson Woods:

But anyway, I don't think she would have a good sense of humor about it.

Alethea Felton:

Just a joke, but no, but that just goes to the spirit of Adrienne and so thank you for that background on her, because now I have this vivid image of her and just the joy and the light she brought into this world. And you were not just her big sister, but you also took on a mother figure role and this is no disrespect to your mom, but a mother figure type of a role and share with us about Adrienne's journey in terms of what happened to her or her diagnosis, and talk to us about how you navigated through all of that, while still trying to be a support to her.

Andrea Wilson Woods:

So, to set it up for your listeners, adrienne and I have the same mother but different fathers, and her father died before she was born in a car accident, quite suddenly, and he was the love of my mother's life, there's no doubt about that. And my mother was just devastated and by that time my parents had been divorced three years. My mother was ready to leave Arkansas and wanted to move back to her home state of Alabama, and I went with my mom and my brother went with my dad and stepmom. So they kind of split us up like property, which I don't recommend.

Andrea Wilson Woods:

But, that's what happened, and my mom didn't know she was pregnant. She was told she could never get pregnant again and she was in her early 40s. Well, guess what? Doctors don't know everything and we'll talk more about that, but doctors were wrong. And so by the time Adrian was born Adrian was born a couple of months before my 14th birthday, so we were essentially 14 years apart and, and I mean I took care of Adrienne all through high school. I mean she was always with me, and.

Andrea Wilson Woods:

But then I left home to go to college and I went across the country to California and part of that was to get as far away from my mother as possible. I really just I wanted to have my own life and I felt like in high school I was my mother's housewife, in the sense that I just did everything for her. I mean, other than her working. I literally did everything else and, mind you, I went to a charter fine arts school where the average day could be 10 hours long, and so it was just a really intense childhood and intense high school years. And, to put it even more perspective, if something went wrong at daycare, for example, the daycare did not call my mother, the daycare would call my high school and get me and to come pick up my sister if something happened.

Andrea Wilson Woods:

So, and so I left home, I went to college and I still spoke to my sister all the time. I visited, you know, many times holidays, summers, et cetera. And then in the Christmas of 1994, december of 1994, adrian was coming out for what was supposed to be a two-week Christmas vacation and I had been very worried because our mother's an addict, which which I got a glimpse of in high school but didn't fully understand until college and our mother had finally lost her nursing license for shooting up morphine at work and because back in those days it's not not so much the case now, but back in those days it was very easy to get access to drugs as a nurse or a doctor, and very common, by the way, for very easy to get access to drugs as a nurse or doctor, and very common, by the way, for both of those professions to have addiction issues. And my mother refused to go to treatment, never got her nursing license back and her life just unraveled, completely unraveled. So I was very worried. I was actually sending money home, even though I didn't have reliable income at all. I was actually sending money home even though I didn't have reliable income at all.

Andrea Wilson Woods:

And so my sister comes out to visit and the day after Christmas our mother calls, says she doesn't want to be a mother anymore and she wanted me to take Adrienne. And I didn't know at the time. I found this out years later that I was literally my mother's last choice. Like she tried everyone else before, she tried me and I think that's because she knew. When I saw how bad things had gotten and I said this to my mother, I said, if I take her now, I will not give her back. I will not give her back and and I think deep down my mother knew that that would happen. And so that's that is what happened. So at one point our mother said she wanted my sister back. My mother still had not gone to rehab, had not gotten treatment for her addiction issues. I said no, I ended up suing her in court and won legal custody. So I raised Adrian all through my twenties. I was her legal guardian, I was her parent and then, I was her sister and I'll pause there.

Alethea Felton:

She moved from Arkansas to California, or did you go?

Andrea Wilson Woods:

back home. No, she moved. At that point my mother had been moving all over the place just trying to find work. So at that point my mother was in Kansas, so my sister was visiting from Kansas and moved to Los Angeles. Okay, okay, yeah, good question.

Alethea Felton:

Yeah, wow, okay, okay. So now your brother. Was he already grown then?

Andrea Wilson Woods:

Yeah, he was. Well, he was 19. Okay, Okay.

Alethea Felton:

So now you and Adrienne have started this life in California. You're her sister, slash mommy. You've taken on that role. You already have a close knit bond with her and as time is going by and you're really trying to establish your life and start a life for her as well, something happens along the way as time proceeds and your lives change forever. Tell us about what happened to Adrienne.

Andrea Wilson Woods:

So I raised Adrienne all through my twenties and on May 16th 2001, I came home from work At that point I was a teacher to be on her schedule and typically when I walked in the door we had a rule in our house homework first. I was a very strict parent and so typically when I walked in she would be at the kitchen table doing her homework and that's what I would see, and so. But this time I walked in and she was on the living room floor curled up in a fetal position, clutching her right side, saying she couldn't breathe. And you know, I mean, this was a kid that never cried or ever volunteered to go to the doctor. And she said I think we need to go see my pediatrician, pediatrician. And so we turned around, we went to see her pediatrician, who was just down the street, which is rare in Los Angeles, but he was, he was close, and when we walked in he thought we were there because exactly two weeks to the day, two weeks prior, we had gone and had an appointment because she was having this right shoulder pain. He thought he had just she had pulled a muscle or slightly dislocated it because her PE credit in that first year of high school was dance class. So she was in dance class every single day and very active, and that's how fast things can change.

Andrea Wilson Woods:

The day before she was fine, active in class. The next day she woke up. She was actually in pain all day but did not want to call me at work and waited until I got home to tell me. And so we saw her pediatrician. He didn't like what he saw. He sent us to the local hospital there's only one in Burbank and they didn't like what they saw and they ran a CAT scan. And then we just sat there waiting for the results of the CAT scan. In the meantime you know we're calling people and you know letting people know she's probably not gonna be in school tomorrow and things like that. And then this ER doctor walked in and I'll never forget it because I don't think this doctor had ever given this kind of news before.

Andrea Wilson Woods:

I mean the look on his face. There was just, he was almost. I mean he had no color in his face, it was gone. I mean he just and he wouldn't look at her. By the way, that's a tip, that's a sign. If they don't look at the patient, that's a sign. And he wouldn't even look at her. And he said and he wouldn't say her name. And he said she has tumors in her liver and lungs and we're not equipped to handle the situation. We've arranged for a transfer to Children's Hospital Los Angeles. I'm sorry, and he walked out and that's how fast it was. So from the time I got home until the time we heard those words was about six hours, and sure enough they arranged for that ambulance. We went to Children's Hospital Los Angeles, which was just over the hill, and she was admitted that night to Children's Hospital.

Alethea Felton:

Andrea, can you take us to that moment, in the immediacy of hearing it, of hearing it, how are you feeling? How are you processing or not? Take us inside of you in that moment when you're getting this information?

Andrea Wilson Woods:

before I can answer that, I have to tell you something that Adrian said, so, as she was being wheeled in for this CAT scan mind you, she'd never had a CAT scan or had any of these kinds of tests before she's been wheeled in for this CAT scan and she said hey, sissy, which is what she called me, hey, sissy, watch it be cancer. And I said bite your tongue, you know. And she laughed and I laughed. You know, we've been both, you know. And she laughed and I laughed. You know, we've been both, you know, more so than her had a dark sense of humor, but, like I said, she's quite witty, so she's giggling as she's going through this. We're wheeling her in this door and, of course, I'm waiting right outside.

Andrea Wilson Woods:

And when the doctor came in with that news, um, I was already sitting down, I was holding her hand, I was to her left and I was holding her left hand in my right hand and we both burst into tears immediately, like, just like. It was just the spontaneous reaction that we both burst into tears and from the shock of it, and I am still crying, you know, almost uncontrollably, still holding her hand, and she has stopped. And she said I was just joking. And I said what? And she said I was just joking. And I said hey, watch, it be cancer. And then we started laughing. And then we just laughed, and laughed, and laughed. And I think I say in my book that whoever can hear us on the other side of that curtain must think we're crazy.

Andrea Wilson Woods:

Because we just went from like sobbing to laughing again. She could always make me laugh and and you know, at that point we're just laughing. I mean it's just like this is crazy. But the minute we got those words, both she and I knew, and we we we sort of protected each other from it, but I knew it was bad and I did think it it, but I knew it was bad and I did think it was cancer, and she knew it was bad and she did think it was cancer, whereas our close friends thought, you know, there's been a mistake or she has some kind of virus in her body, you know.

Andrea Wilson Woods:

Or the CAT scan is not correct. You know, they just they didn't think, they did not, they could not even wrap their heads around it. Um and but from that moment on, I just, I just knew, I just, knew.

Andrea Wilson Woods:

And I had had different premonitions, um, throughout this experience. But the very first premonition when the moment Adrian was born, I was the first person to hold her, because my mother had a C-section and she was actually still under, but she arranged for me to be there and because she was a nurse, and so she arranged for me to actually be there, and so I was the very first person to hold Adrian, other than the doctors, and I knew immediately I would outlive her Like the minute they put her in my arms. But I honestly and I never shared that with anyone, but I just thought she would be like in her 50s and I would be my 70s.

Alethea Felton:

Do you know what I mean? I?

Andrea Wilson Woods:

thought I'm going to outlive her. But like I never, never thought that she would die from what was primary liver cancer, I never thought that that would happen at that age and then. But these other two premonitions also came true.

Alethea Felton:

So and from the time of her diagnosis until her transition, how long did she live with?

Andrea Wilson Woods:

liver cancer 147 days, so less than five months. Girl From May 16th to October 9th.

Alethea Felton:

Yeah, from the time that you started raising her, even through her exiting this realm, this life. How in the world did you manage to have the strength and the resilience when, at times, the load felt too heavy? How did you go about?

Andrea Wilson Woods:

doing that While she was alive. I think I've thought a lot about this resilience, because I get that a lot and a really bad joke is, if you want to be resilient, have a really shitty childhood, like that's a bad joke, but it certainly helps.

Andrea Wilson Woods:

It starts there. But it's not just that. I think for me resilience is two pieces and you need both. You need a North star. So you need to have some kind of future right.

Andrea Wilson Woods:

And Adrienne was my North star. You know in my twenties Like I really just wanted to have a better life for her. I wanted to create a better life for her. I wanted to make things work for her, be there for her, wanted her to know she was loved unconditionally. So she was my North star. But then at the same time you have the day to day and and, and you know you have to live in the day to day and those two things. It sounds like they wouldn't go together, but they very much do. So when she was diagnosed with cancer, my North Star became still Adrian. But now we're going to get her better. We're going to get her better. We're going to do everything we can to get her better. But in the day to day of going to doctor's appointments, to state, being at the hospital all day to her, most of her chemotherapy was inpatient, so actually being admitted to the hospital.

Alethea Felton:

Okay.

Andrea Wilson Woods:

In the day to day. Sometimes you're living hour by hour. I mean it really is that, it's just like that, it's hour by hour, you're so present. So in the moment, I think really is that, it's just like that, it's hour by hour, you're so present. So in the moment, I think that is what a very serious, life-threatening illness does for you.

Andrea Wilson Woods:

Like you are forced to live in the present. You have to, you have to, you don't have a choice. But my North star was still we got, we got to get her better. We got to try everything we can. We got, we got to get her better, we got to try everything we can. Um, and we've got to look at every road, every avenue, every possibility.

Andrea Wilson Woods:

And after she died, I, I, I, was really lost. And the first year I and I, I do, I mean, I do know why it's a deeper psychological conversation but I really just that first year pretended I was okay for everyone, like I, just every, everyone wanted me to be okay. None of my friends had kids yet, but most of them were married and in fact my best friend from college had her son the following year, in August of 2002. And I was there for the delivery and so everybody, just their lives kept going and mine just sort of stopped. And when I hit that one year anniversary I completely fell apart. Okay, and I actually recommend that to people, because what I did was put my grief on hold for a whole year, because I was worried about what other people thought, because I was worried that they would be worried about me. And that's ridiculous, because putting that grief on hold for a year did not help me. It hurt me significantly significantly.

Alethea Felton:

That's a heavy load to carry. Keeping that grief in you and not letting it out, I mean, that's a lot. And so what I'm curious about is, once you decided to lean into that grief and give into it and to let your grieving journey happen in the way that it was supposed to, what are some unexpected strengths or qualities that you actually uncovered or discovered within yourself?

Andrea Wilson Woods:

Well, I want to say, when I leaned into my grief and I think, this is good for people to know, and I have found that I'm not alone in this. You will lose people. You will lose a lot of people. Nobody liked unhappy Andrea. Let's put it that way.

Andrea Wilson Woods:

And while I had a close knit group of friends that were all sort of like aunts and uncles to my sister. They were very close to her. They were all there for most of them actually for her cancer journey. They were not friends with each other, right. So the glue holding that all these friends together was me and my partner at the time, who had a young son who was very close to my sister's age. So they were they were more like siblings, and so we had this family unit.

Andrea Wilson Woods:

that was kind of the core of all these different friendships. When I finally gave into that grief, um, I lost all those friends not all at once, but um over a period of time and my relationship ended because I was so deep in depression and he was so deep into anger and Blue Faery really came out of me trying to figure out a way to channel my grief. You know me trying to find my North Star again. Because I had lost my North Star.

Andrea Wilson Woods:

I had lost the most important person in my life, and I just did not know what to do. And when you spend your 20s raising a child, you don't have time to build a career. So I didn't have a career, and so I was really trying to figure things out, and that's how Blue Faery was born. Yeah.

Alethea Felton:

You have so many responsibilities at such a young age and yet, although it could have been a lot at times, you navigated them in some aspects with such grace, because a lot of people would have just fallen apart in general and maybe if it didn't feel like that at the time. That's another level of maturity, and also purpose, and sometimes purpose can be birthed out of pain, and so I'm so glad you mentioned Blue Faery Bee, because I was going to transition into that. Blue Faery was going to transition into that Blue Faery. Tell us about it. But also, what is the significance of the name, the color, what sparked all of that, for you to create Blue Faery?

Andrea Wilson Woods:

Well, I started Blue Faery because there was not a single organization in the US, because there was not a single organization in the US focusing on primary liver cancer in 2002, end of 2002, beginning of 2003.

Andrea Wilson Woods:

I did a lot of homework. I did a lot of research. When people ask me if you want to start a nonprofit, I always say no, no, don't do it, because someone else is probably already doing it and see what you can do for them probably already doing it and see what you can do for them. And I reached out to the largest liver disease organization at the time and they wanted nothing to do with liver cancer and for me, I could see the trajectory of liver cancer and I knew it was going to get worse, both in the US and around the world. I had no doubt in my mind about that and I just couldn't believe there wasn't a single organization dedicated to this. And my sister had the most common type of liver cancer that makes up 90% of all liver cancers, called hepatocellular carcinoma. So Blue Faery's mission is to prevent, treat and cure primary liver Cancer, specifically hepatocellular carcinoma or HCC, through research, education and advocacy.

Andrea Wilson Woods:

So I knew I wanted to start this organization because nothing existed. But I didn't have a name and I went in liver cancer so people knew what we did. And I wanted Adrienne's name so people knew who she was. But something was missing from a marketing perspective. My background was writing and marketing and teaching and I was like something's missing and I just I just could not figure it out. So I sent an email to that same group of friends At this point they're still on board with me and they did not understand this nonprofit thing I was doing, but they were still on board. And they did not understand this nonprofit thing I was doing, but they were still on board. So, and they all came back with some version of Blue Faery, because Adrienne's favorite color in the whole world was blue. Yes, I wouldn't let her dye her hair until she was 14. And then she dyed it red and purple and blue and blue again and in fact when she was diagnosed she had sort of blue, greenish hair.

Alethea Felton:

It was kind of washing it out.

Andrea Wilson Woods:

And then she got a blue wig to maintain her look is what? She said, and she bought these blue butterfly wings when she was diagnosed and started wearing them in public and we started calling her our blue fairy.

Andrea Wilson Woods:

Oh, I love it and she loved fairies. That was the other thing. She absolutely loved fairies, believed in fairies and knew they existed and um, and so it, like I said, everybody else saw it, but I just didn't and we spell faery with an e instead of an I, because that was the way she liked it. And um, and the actual fairy, um, you have to look very close at a very, uh, high resolution um graphic but, um, the actual fairy's face is drawn after my sister's face oh really oh, wow, yeah, the person who designed it.

Andrea Wilson Woods:

we went through a few designers, but he finally totally captured her.

Alethea Felton:

Yeah, he did, because I've seen the logo but I never paid attention to that. I'm definitely going to go back and look, that's really cool. Wow, wow, wow, wow offline about it.

Alethea Felton:

I know two people in particular, with one being one of my very best friends in the world who is currently living with stage four liver cancer, and she, you know, I told you her story where we think some of her doctors missed it early oh, I'm sure, I'm sure they did there was a spot and she questioned them about it and they said, oh, it's fine.

Alethea Felton:

And then the spot was there and she questioned it again. They said, oh, it's fine. And then finally was like, oh, we need to do more tests, you know, and it's kind of, yeah, it's frustrating, I'm not going to act like it's not it's very, very frustrating to know that she knew something wasn't right early and was trying to get the help. And so what I'm inclined to ask is you have turned your personal tragedy into a movement that that really advocates for liver cancer patients worldwide. And so when you think about people having hope because even my friends who are diagnosed with it still have hope when you think about hope, what is your personal definition of hope, about hope, what is your personal definition of hope, as well as how do you help the platform, how do you help the people that you encounter through your various platforms, and what ways are you helping them to maintain hope in the face of such ongoing adversity when it comes to this illness?

Andrea Wilson Woods:

It's a challenge, right. I think my personal definition of hope is hope it's not believing things are going to change, but it's believing that there's something more or something out there that sounds wow.

Alethea Felton:

Way too woo-woo even for me, but I mean, I like that though, and I'll let you to keep talking, but I like that, and I'm going to tell you why, as faith-filled as I am, life can really suck sometimes. It really can.

Andrea Wilson Woods:

That's just the bottom line it can suck.

Alethea Felton:

I don't care how religious or spiritual a person is or lack thereof. We have to be transparent about it. Is that life can really suck. We get angry at God, universe, whatever you want to call it. We get angry. We might find ourselves cussing and fussing, and it doesn't mean that we still don't have moments of joy. It doesn't mean that we don't have hope. So no, keep going on that. It's not woo-woo to me. I feel you, because sometimes people front and act like oh, you know, I'm okay, when deep down they're not. Yeah, so hope, what is it? What does it look like, and how do you try to instill hope to the people that you encounter?

Andrea Wilson Woods:

I feel like we do a really good job of what we call realistic hope. Ooh, so it used to be. It's gotten better now, but it used to be when a patient would call me and I always take calls from patients and family members and I would ask them well, what stage are you in? Because stage of your cancer determines treatment period. End of discussion. Doesn't matter what cancer like, stage is everything. And, granted, there are different staging systems, but you still have to know the stage and I can't tell you how many times. Like I said, it's gotten better, much, much better now, but how many times patients had no idea what stage and I knew, based on what they were getting for treatment, that they were in stage If it, even if it had not metastasized, which is generally known as stage four or stage.

Andrea Wilson Woods:

D. I knew it was bad and I also knew that their doctor had not had a real conversation about them with them about, yes, I'm giving you medication but it's not curative at all. We know it's not going to cure you, and so that's what I mean by realistic hope. I never am afraid to answer any patient's questions or their family members' questions, and I always talk about how, if you have an advanced stage of liver cancer, it is treatable, but it is not what they consider curable, unless you can get downstage, to what they call downstage and be eligible for a transplant. Which is the most curative measure is a transplant or being able to completely cut it out of you. In my sister's case and many people's cases, it is advanced and my sister's case had already spread to her lungs and back then there was no treatment and I wish.

Andrea Wilson Woods:

I wish the doctors had been more honest about, yeah, we're going to throw all these chemo drugs, but they have no proof of efficacy on this cancer. Okay, and it finally came down to when I just I realized how inexperienced the children's hospital pediatric oncologists were with this cancer. I eventually got her to UCLA where they saw her cancer every single day. You know she didn't have a pediatric cancer, so that was one of the challenges. I'm not saying the pediatric oncologists there are bad. They're not. They're experts in childhood cancers. They were not experts in primary liver cancer.

Andrea Wilson Woods:

So so I, yeah, I'm a firm believer in realistic hope and um, and really, really encouraging patients and caregivers. For first, encouraging caregivers to listen to patients and it's always a patient's choice, no matter what and to honor that decision, even if you don't agree with it. And then for caregivers, finding something for them to, you know, giving them some support, because that none of that existed when my sister was diagnosed. There wasn't even a parent group at the time. I couldn't believe it, you know. I was like where's the parent groups? I'll join, I'll sign up. So I think I answered your question.

Alethea Felton:

Yes, you definitely did. And, and you know, a huge premise of this podcast, being the power transformation podcast, isn't even necessarily that the person or the guest has overcome that challenge completely, but it's a way to take whatever adversity or obstacle we have and shifting it, making it into something beautiful that not only helps us but helps the lives of others and the word beautiful doesn't even necessarily mean perfect. But what is it doing to help others to be more informed, wiser, resilient, courageous, et cetera? And so, with that being said, we've kind of touched the surface of Blue Faery as a whole. But for a person who is ignorant to or just really doesn't know what Blue Faery does, give us a brief overview of what services you all provide. What do you exactly do and how do you help people?

Andrea Wilson Woods:

Well, I'll start with the top two resources I think are the most helpful for patients and families Our patient resource guides. From the very beginning we did patient education. In layman's terms, we used to do it all in-house. Now we have a great vendor that has an incredible distribution network. So our patient resource guides have been in over 700 treatment centers across the US all 50 states. They're in English, spanish and Chinese. We also ship worldwide for free and we're about to. We'll start the fourth edition coming up next year. It'll be published like mid next year, probably in a quarter to fourth edition. And we'll have a fourth edition because that's how quickly the field of liver cancer specifically is changing Like that. We have to update it. Like it's like wow. And I'll start with that because there's a patient who does a lot of work with us now, who participates in a lot of programs and where she was first being seen that particular treatment center didn't carry our guides and then when she went over to another oncology office, it was right there. I think they gave it to her.

Andrea Wilson Woods:

And she opened it up and she she said to someone quote her she was like, she was like she saw the, the blue fairy and she was like well, you know so. So she immediately went to our website and we have a private community, a liver cancer community, and it is HIPAA compliant. We could have had a Facebook group, and a lot of other advocates disagree with me, but your health data is not safe on Facebook. Mark Zuckerberg does not care about HIPAA compliance, nor does he have to right? Even if your Facebook group is private, the data itself is not. We waited till a solution came along that was HIPAA compliant. So we have a private community where people interact with each other. That's how we end up with. A lot of volunteers as well is in that community.

Andrea Wilson Woods:

But this young woman found our community and got involved right away and then got her partner involved and I'm actually really happy to say in this moment in time, she is responding incredibly well to treatment. Like her tumors are actually shrinking. Wow, that's wonderful, yeah, yeah. So I feel like we also have a lot of other advocacy and education programs. We have a.

Andrea Wilson Woods:

We have a program titled Love your Liver where we, at different times of the year, tying in with certain months like Black History Month or Hispanic Heritage Month, which is going on right now. We focus on underserved at high risk populations and minorities are at a higher risk for liver cancer and we do programs for that population and it's a native language. So for Hispanic Heritage Month, we just had a program this week and Spanish, and we also and I think this is really key we make sure the doctors doing the presentations and the workshops reflect the patient population, so patients tend to feel a lot more comfortable and safer about the information they're receiving. And, yeah, we have many more programs. I could go on, but at the end of the day, like we're here for patients and we put patients and families first, of course, and I will, of course, have all of that info in the show notes.

Alethea Felton:

Which leads me to the question of what exactly is your website and how can people join in on the cause?

Andrea Wilson Woods:

So it's BlueFerry B-L-U-E-F-A-E-R-Yorg, so it's just Ferry with an E instead of an I, and on that page there's a couple of things. You can sign up for our newsletter, which is on every page of the website. You can, of course, we always appreciate nonprofits do not survive on air, so we always appreciate um, 100% tax deductible gifts. So just click that donate button or the give button and um, and underneath other ways to give is the volunteer button. So, um, I'm super excited because someone reached out to me and she is a liver cancer survivor and let me tell you there are not many of them, and I'm meeting with her on Friday to talk about how she can become more involved with Blue Faery. So I'm very excited to meet her.

Alethea Felton:

That is absolutely wonderful. And the two people that I know one of them I think I shared with you, but she was stage four and her latest scans and everything are clear. It's really miraculous and I want to definitely connect you with her. I will ask her if she's open to it. And then, of course, the friend of mine who is currently stage four and living with this. I will definitely have her to connect. Also, I can't remember, but on your website, is there a way people can buy your book or is that separate?

Andrea Wilson Woods:

So you can buy my sister's book, which just came out in March. It's under Programs liver cancer journal project.

Andrea Wilson Woods:

And the title of the book is I'd rather be dead than deaf. Young woman's journey with liver cancer. And because that's what she said to us when she found out that this very toxic chemotherapy drugs it's used across many cancers causes deafness. I mean it's not like it might it does. Um, cancers causes deafness. I mean it's not like it might it does. And so, as as a budding musician, she was like no, and she did agree to try it. And we promised her as soon as she started having any hearing loss, if she did, we would stop. And after two rounds she started having hearing loss and she just said to the doctor done, done, find another another one. My sister just bought a book and there's over 200 chemotherapy drugs in there find another one so you know she was.

Andrea Wilson Woods:

She was a real advocate for herself too when she felt good enough. She was a real advocate for herself. Um, do we have time for one more story? Of course, yes. Yeah, you can always edit it out later, so so she really liked when she was in the hospital.

Andrea Wilson Woods:

She preferred the oxygen mask over the nasal that's right, because they really dried out her sinuses and so so she, if she needed to talk, she would just pull the mask down, but that's what she preferred. So, um, so we're at children's Hospital, los Angeles. Um, I forget which round of chemotherapy it was number two or three and I go. I go to the bathroom. Like I walk away for five minutes to go to the bathroom because you're not allowed to use the patient's bathroom. So I go to the parents' bathrooms and I come back and she's just miserable and, um, and, and she's just shaking her head and the nasal cannulas are in her nose. I'm like what happened? And she was like this nurse came in and insisted I do this and da, da, da. And she's like, and I just didn't have the energy, sissy, to fight with her.

Andrea Wilson Woods:

You know, but I want my mask back and I said all right. And so I called the nurse in there and actually I found out what nurse it was. I went to the head nurse of the station and um said why? Why she's 15 years old, she's not three, she's 15. She knows what she wants. Get her the oxygen mask. That's what she prefers. And that nurse can no longer ever work with my sister again, ever. And if I could have gotten her fired I would have, because she should not be working with children, and but it was one of the few times I remember my sister just she just didn't have the energy to stand up for herself and she was a very strong advocate for herself and for her friends, but she just couldn't do it.

Alethea Felton:

And I think that's a great example of you know, you have to advocate, you have to it truly is, and thank you for sharing that, because sometimes people don't think that they have a voice and they really do. But it's also important that when a patient is tired and exhausted, a support system means so much, and it doesn't necessarily have to be a blood relative, but someone there who can really help them and support them. And as we start to bring this to a close, when you think about Adrian, her journey, blue Fairy and everything else in between, andrea, what would you say that your journey has taught you the most about love, loss and the human spirit?

Andrea Wilson Woods:

Oh, human spirit, oh, um, I think it's a great question. It's probably gonna make me cry. Um, okay, I've had people to cry, I know. I know it's a good question. Um, I think the best way for me to answer it is this If I had to go back and do it all over again, knowing the outcome, I would, I would.

Andrea Wilson Woods:

And there's a movie, sci-fi movie called I think it's called Arrival, with Amy Adams, and people told me not to go see that movie and I won't spoil it for people, but basically that's a message that she learns. And all the people who said that to me don't go see this movie. It's going to upset you, it's going to make you cry, blah, blah, blah. I just said no because I feel the same way, like if I had to go back and do it all over again, knowing the outcome, knowing I couldn't fix it, couldn't change it, and and and and, having the grief, I would do it because raising her was the best thing I've ever done with my life. It's not Blue Faery. Blue Faery will live on beyond me. It's, it was raising her. That was the absolute, like best gift of my life.

Andrea Wilson Woods:

And so I do struggle a little bit when I see people who don't appreciate their children. Kids are hard, they're tough, they're a pain in the butt. Sometimes that is the way they are. But, um, when I I see people who have children and you know, maybe they're just having a bad day, but sometimes it seems like more than that, like they just don't want to be parents, and I'm like, well then, why did you do this? Like, why did you? You know you made a decision here step up, do it. Um, because it was the best experience of my life being her parent, absolutely.

Alethea Felton:

Wow.

Andrea Wilson Woods:

A closing question. Oh no, this is not one of your icebreakers, is it Uh-uh?

Alethea Felton:

No, not at all. A closing question for you. I personally believe that the soul lives forever, so we don't ever really technically die. So this is a hypothetical question. But if Adrian were physically a guest on this podcast with you right now, with everything that's happened, what would you say to her in this moment about how courageously she fought and how vibrantly she lived? What would you say as her sister? What would you tell her?

Andrea Wilson Woods:

you say, as her sister, what would you tell her? Well, I don't think I told her enough how proud I was of her and I am, I'm extremely proud of her and I always say that I don't know a single adult who could have handled that diagnosis better than she did. I don't know anyone to this day. I don't know anyone to this day because she had courage and she had dignity and grace and, most importantly, humor, like she always found the humor and everything and I think that's because that was kind of one of our core values was humor and joy, and when you're going through really tough times, sometimes you got to find a humor to get through it.

Andrea Wilson Woods:

And you know I remember jaundice. So the yellowing of the eyes, the skin, is a sign of your liver failing. And Adrienne was otherwise an incredibly healthy patient. I mean, that was. You know that was attributed to a lot of things, but part of it was her youth, and so her eyes started to turn yellow just less than a week before she died and her doctor came in and we were at UCLA and he's and I had noticed, and it had just happened like that morning, and so she hadn't looked in a mirror yet and the doctor says you know, your jaundice, your liver's now failing. And you know Adrian looked him right in the eye and she's like, oh well, I didn't notice and I totally cracked up Like she laughed.

Alethea Felton:

Oh, I love her.

Andrea Wilson Woods:

I know right, my partner did not think it was this funny. He was very much a father figure to her and he was devastated. But I knew she was just trying to, like, ease the tension and, you know, make a joke. And and it was funny because how could she have noticed? She had not looked in the mirror yet. I mean, she didn't know. And you can't smell something, you can feel, um, and and her skin wasn't yellow at all, it only was, it was only in the whites of her eyes had started to yellow and and that's when we knew like her liver was, couldn't do it anymore, couldn't tolerate much more. And if the tumors had not been in her lungs she might've been a really viable candidate for a liver transplant, but with those metastases it was too late transplant, but with those metastases it was too late.

Alethea Felton:

Yeah, you know what, andrea?

Alethea Felton:

I thank you for allowing us to learn so much about this remarkable, astonishing sister named Adrienne.

Alethea Felton:

I am so glad to have met her through you, and I want to thank you sincerely that while, as you know, I don't live with liver cancer, I've lived with liver disease ever since birth, and so I understand a portion of liver health concerns things like that, and so, although it's not liver disease, I thank you for creating this platform to bring greater awareness to the liver as a whole. So I want to thank you as someone living with a compromised liver but yet not having that to be my entire identity. So I just want to thank you for creating a space where you are truly changing lives. Whether you realize how deeply you are or not, I'm telling you hands down that you are, and I want to also thank you for just taking time out of your extraordinarily busy schedule to be a guest here on the Power Transformation Podcast. Continue living courageously and confidently and, yes, this organization will outlive you, and I am just believing that for generations upon generations to come, that it will truly, truly change the face of this world. So thank you again.

Andrea Wilson Woods:

Well, thank you. You're an amazing interviewer. I really appreciate it.

Alethea Felton:

Thank you for tuning in to this episode of the Power Transformation Podcast. If you enjoyed this episode, be sure to follow or subscribe, leave a five-star rating and write a review. It helps us inspire even more listeners. And don't keep it to yourself. Share it with someone who could use a little power in their transformation. Until next time, keep bouncing back, keep rising and be good to yourself and to others.

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