00:02
So, Andrea, thank you so much for being on the show. I thought we could start by you telling us about Adrian.
00:12
Well, first of all, thank you so much for having me. I'm thrilled to be here. And I would love to tell you about Adrienne. Adrienne is my half sister. We have the same mother, but different fathers. Her father died in a car accident before she was born. He was engaged to our mother. And so there's a 14 year age gap between the two of us. And I spent my high school years taking care of my baby sister.
but when she was four, I went off to college. So I left the South and moved to sunny Southern California and attended USC. And I still kept in touch. I still would visit during holidays. I was still very close to my sister, even though she was quite young. And then my sister came out for what was supposed to be a two week Christmas vacation. And this was December of 1994.
I had actually graduated the year before a little bit early from college. So I had my college degree, had a great apartment. I had a little bit of money, but I was living with a really abusive alcoholic. So it was not an ideal situation, but I was looking forward to this two week vacation and I went all out. Like I spent way too much money that I shouldn't have. And our mother called the day after Christmas and said she didn't want to be a mother anymore.
01:37
And I didn't put it together at the time, but this was three days before my mother's 50th birthday. So I think you could definitely chalk it part of that up to a midlife crisis, but also our mother was an addict and had been since I was a child, but she'd always been very high functioning until she got caught shooting up morphine at work and lost her job as a nurse. And she could have gone to rehab. She was offered to rehab.
02:06
It's very common for doctors and nurses to have issues with addiction, but she refused. And once she lost her nursing license, her life completely unraveled. She could not keep it together. And so I told my mother on that day, December 26th, 1994, that if I took my sister, I was not going to give her back. And I said, if I take her now, I'm not, because I had just seen what had happened to my sister's life. And
02:35
I think she sort of blew me off and was like, all right, whatever. And ultimately I did go to court, sued her for for legal custody and won.
02:48
I know, I didn't even want to continue, I thought I would stop there.
02:50
No, thank you for pausing there because wow. Okay, so some details. How old were you there and how old was your sister?
03:02
I was 22 and she was 8.
03:05
Wow, okay. So, I mean, I'm really, the first thing that I'm present to is your, the courage and conviction for you to be able to make that decision at 22. And when your life is not, you know, together and you're trying to figure it out and you just knew that you had to take care of your sister and.
It's, it's, yeah, it's, it's very, I don't know what the word I'm looking for is, but I'm very moved by that.
03:42
Thank you. I found out later that I was my mother's last choice, actually. I found out later that she had tried to pawn my sister off on multiple people and that I was her very last option. And I think I was her last option. This is pure speculation on my part, but I think not because my mother didn't think I would do a great job, but because she knew I wouldn't give her back. She knew that I was not going to give her back.
04:09
Mm -hmm. What, so I have so many questions. So the first thing is, what, so, because you were on vacation, she was on vacation with you for two weeks, and it was during that time, so it wasn't like something she was planning, or do you think she was already planning it from the beginning, and okay.
04:28
my mother was planning it because my sister came with two suitcases, which really surprised me for two weeks. One suitcase had all of her clothes. The other suitcase had all of her stuffed animals and toys. So my mother planned it that way.
04:43.498
Did you know what was going on with your mom fully? Is that why you were saying you would not give her back? Were you aware of everything? Okay.
04:53.674
Yeah, I did. I did. My mom had refused to go to rehab. I had been sending her money. I had even given her a calling card so my sister could call me whenever she wanted. And she just, she refused to admit she had a problem. To this day, she's never gotten help and she's still alive.
05:13.611
Yeah, wow, that's gotta be really challenging. So what happened next? I mean, you're 22 now and you have an eight -year -old and it sounds like you're not in the greatest situation at home yourself.
05:30.122
Yeah, Adrian really, she saved my life and people always say I saved her and she really saved me because I was in this very abusive relationship and it became physical and I realized that I had to get us out of that situation. You know, if she had not been there, I think I would have stayed and I'm still sort of like processing why that is. But, but I mean, I grew up with an addict and
05:59.434
And so I had this like, you know, moth to flame effect on with people who need people with problems. Come to me. I will help you. And and ultimately I ended that relationship the following spring and my sister and I ended up moving to a new apartment on our own. And I mean, it was it was a real struggle. It was I'm not going to sugarcoat it. It was really, really tough. And at one point,
06:28.714
I had four part -time jobs so I could be on her schedule because the problem with sort of a nine to five job is that it wouldn't allow me to be on her schedule. And I wanted to drop her off every day at school. I wanted to pick her up every day at school. And so I sort of cobbled together a living and it was really tough for a long time.
06:51.211
Wow, and you're in your early 20s.
06:56.171
How, what was it like for her during this time?
07:06.634
I think it was harder than I understood for a long time. I did meet someone two years after I had my sister and I can out him, he doesn't care, his name is John, and he had a son and his son was only six years younger than my sister. So they were like brother and sister and we had this family unit.
07:31.722
And that was probably the best thing that could have happened because my sister really needed a father figure. She needed a strong male role model. And that was our family. And John and I never got married, but his son, whose name I won't say, and my sister were very close. And ultimately we did move in together to a house in Burbank, California.
07:58.38
Okay, and so what happened next?
08:08.458
So she, Adrienne really struggled with depression. I found out when she was 12, she was suicidal. And I was so fortunate because we found the right therapist at the right time. I'm still friends with her today and got her into counseling immediately. And I think that's when I finally understood the full impact of it must be hard for her. You know, her, all of her friends have a mom and a dad, even if they don't live with both their mom and dads, right? But.
08:36.298
She lives with her sissy, that's what she called me, and John. And I started to see how that was difficult for her. And also there was a lot of abuse going on when I wasn't there. Those years I was away at college, a lot of abuse happened to my sister that I wasn't aware of. But finally she was coming into her own. And middle school sucked.
09:01.61
But once she got to high school, she seemed to sort of just embrace who she was. And the minute she did that, things got easier. And she was always a good student. She was a straight A student with a 4 .0 GPA. But socially, there were issues in middle school. But high school was looking great. She had a wonderful boyfriend. And then three weeks before the end of her first year of high school, about a month after her 15th birthday, she was diagnosed with stage four liver cancer.
09:33.9
Stage 4?
09:35.914
Yeah, stage four. Yeah, I came home from work and I started teaching to be on her schedule. And so typically when I walked in the door, we had a rule in our house homework first. So typically I would see her at the kitchen table doing her homework. And instead I came home from work and found her curled up in a fetal position on the floor saying that she couldn't breathe and, and then, and crying. And this was a kid who did not cry. So we went to her pediatrician.
and then he sent us to the hospital for a CAT scan and it was an ER doctor actually who told us she had tumors in her liver and lungs and then we were sent to Children's Hospital Los Angeles. And so from the time I came home from work to the time we got that news was about six hours. So I tell people your life can change in an
instant, right? In an instant you can find out your loved one died in a car accident, for example. Or for us it was six hours. It was six hours of waiting and waiting and to find out she had tumors in her liver and lungs. We didn't get the official diagnosis for two more days, but that was enough. And she never went back to school in person and I did not go back to work as a teacher until I began homeschooling her that fall.
10:58.38
And okay wow so and how are they you now?
11:04.298
I am 28. I'm 28, yeah. Yeah, yeah. I turned 29, no I turned 28 in the hospital. Is that right? Wait, I gotta get my math right. I turned 29 in the hospital during her fourth round of chemo.
11:07.628
28, still baby yourself.
Thank you.
11:20.78
Yeah, I keep focusing on your age, because I keep trying to put myself in your situation when I was your age, dealing with what you were dealing with. And I can't imagine. Yeah, yeah, yeah, yeah. I imagine.
11:27.754
Yeah.
11:32.49
I hear that a lot.
I think I was blissfully naive, like it just never occurred to me. You know what I mean? It just never, never occurred to me my age and being that young, it didn't.
11:47.948
Yeah. Well, you're probably in, at that moment you're probably, well, I don't know if this is true or not, but it sounds like you stepped into this place of like, I gotta do whatever it takes, you know? So it's almost like you step outside of yourself in that moment and it becomes about your sister. Yeah. Yeah.
12:04.234
Exactly.
12:12.458
Exactly. It was about what was best for her. Yeah. It never occurred to me to say no to our mother. It never did.
12:22.732
Yeah. So you went to Children's Hospital, they sent you home, you're homeschooling, some issues beginning some type of treatments.
12:35.562
Yes, so she started from that day she felt pain a week later. She was doing her first round of chemo and so she battled cancer all through that summer and underwent multiple rounds of chemotherapy, which was completely useless for stage four, but that's a whole nother topic we can have about doctors and how they have conversations with people. And knowing what I know now, we...
13:03.05
probably would have done things very differently, but we did what the doctors recommended. And ultimately I transferred her to UCLA because she had primary liver cancer, which is more often seen in adults. And at Children's Hospital Los Angeles, despite it being one of the top 10 in the country, they didn't have the experience with her specific type of cancer. So I had to really battle the insurance to get her to UCLA.
And by the fall, she wanted to go back to school. It was really important to her. So we worked out something with the school district where I was teaching her a couple of her classes, and then we got tutors. And so she was still doing chemotherapy at that point, but at home. And then it just got to a point where it was really clear it was not helping at all, and it was making her sicker.
and she died on October 9th, 2001. So she only lived 147 days with that diagnosis. It was really fast.
14:09.1
What, how, so she was home when she passed.
14:12.842
She was, she was. I had to fight the doctors to get her home, but she was home. Yep.
14:18.924
Yeah, I see you smiling, so it seems like that was meaningful for you.
14:23.53
It was, it, if I had, again, if I had done what the doctor said, I would have put her on a respirator. That's what they wanted me to do. So she went, she, she, she took a very sudden turn for the worse and we ended up in the hospital and at UCLA. and they thought she was in sort of a coma and you know, and I said, I'm taking her home. There's nothing you can do. Like I'm taking her home cause they wanted me to put on a respirator and I, I,
14:53.546
didn't want to do that because one, she was breathing on her own. And two, I knew that if I put on a respirator, I would not be able to turn it off. I would not do it. And I just believe she was still in there. And so, and this is actually one of the best stories in the book, in my opinion, is that they said, okay, well, then you're going to have to go to hospice immediately, which we did. And it was all just a bunch of paperwork.
15:22.826
But this hospice nurse comes in and her job, they sent her in to convince me to keep Adrian at the hospital. And I just like put my body over Adrian's and I don't say it and she's being very nice. And this is like five o 'clock in the morning and I haven't slept in like 35 plus hours at this point. Right. And I said, I don't care who you are. I said, just figure it out because I'm taking my baby home. There's nothing you can say. I'm taking her home. I understand all the risk. We're going home and.
Later on, can I curse on your show? I haven't heard anyone. Okay. Later on that hospice nurse told me that her nickname for me was Andrea. Don't fuck with my family Wilson, which is the best nickname ever. Like it's the best. I was like, you're right. And she did. She said, look, she wants to take her home. So in the process of getting her to prepare Adrian to take her home,
15:56.396
Go for it.
16:19.594
The nurses tried to put a catheter in her. Now mind you, John, the doctors, they were all outside. So it's just me and these two nurses and I'm holding her hand and they're trying to put a catheter in her. And as far as everybody else thinks, she's been in a coma. That's what they all think. And the minute these nurses tried to put that catheter in her, she shut up. She woke up. They looked like they had seen a ghost and she was like, Sissy, make them stop. And she grabbed her IV pole.
and went to the bathroom, would not let me help her. She's like, I don't need your help. Goes to the bathroom, gets back in bed and we put the sheet over her and we opened the door and we let in John, two of our closest friends and the doctor who wanted me to put her on a respirator. And I looked at him and he was just silently weeping. He was just weeping and she looked around at everybody and she had a very dry sense of humor and she was like,
17:16.17
I don't know what all the fuss is about. I was just dreaming.
So we got her home and the entire ambulance ride she was just a chatterbox. She was like, well, what happened? Wait, it's Sunday? What? Because she lost like two days worth of time and we were filling her in on everything that happened. And then she died two days later at home in her bed, you know, surrounded by people who loved her and not in any pain whatsoever and not hooked up to a machine.
17:45.997
Yeah, she sounds like a real character, like a real... Tell me about her personality.
17:48.97
She was hilarious. She was really, she was really funny. I mean, she had this just incredible dry wit and on her tombstone it says young spirit, old soul. And that really sums her up because she had this vivacious spirit. And yet she was, you know, she was going to yoga before yoga was cool. Like she decided to go to yoga.
18:17.965
Hmm.
18:18.89
in the summer of 2000, I'm like, yoga? You want to sign up for yoga? All right, fine, you know. And she was just very spiritual. And I called her my little hippie chick because she was just so in tune and aware of things that I think most of her peers were not. And she also got along very well with adults, extremely well with adults. And you never had to talk down to her. And in fact, if you did, she'd call you out on it. So.
18:38.317
Mm -hmm.
Mm.
18:48.618
So she was a character. She was a handful.
18:52.269
Mmm, love that. Okay, so she passes away and you have to now figure out how to move on. What's going on for you and what was that time like?
19:02.666
Yeah.
19:10.57
Well, I want to call back to one of my favorite episodes before you hit record was that episode about divorce with Carrie. And she mentioned after divorce, it's more than a loss of a marriage, right? You lose friends, things change. And that's what happened for me is my identity was so wrapped up in being my sister's parent. That was my number one priority and everything else was second to that.
19:18.029
Mm.
19:26.957
Yeah.
19:36.525
Mm -hmm.
19:39.306
And the people who knew me knew that. And that first year after she died, I tried really hard to sort of continue to play that role. And even though I couldn't be her parent, you know, I spent more time with John's son. And I really just sort of faked it that first year. And I don't recommend that because I didn't give myself time to grieve.
And the rare times that I showed emotion, whether it was, you know, sadness or anger, which was very rare, but people didn't like it. And so a year after Adrian died, I sort of had a breakdown and I was really suicidal. And it was John who said to me, to his credit, because I didn't think he paid attention, he said, you know, if you kill yourself, Adrian will hate you for it.
20:19.246
Mm.
20:35.946
So you can't kill yourself. Like he knew it was like he was in my brain and he knew I had this like master plan, like total plan that would have worked in my mind. And, and so that really weighed heavily on me. And so I finally said, I've got to find a way to channel this grief. And my goal simply was to volunteer for a nonprofit. Like that was it. Like that, that's what I was going to do. And I looked and looked.
20:36.27
you
20:56.494
Mm -hmm.
20:59.978
and I approached the largest liver disease organization in the US and they wanted nothing to do with liver cancer. And I finally, after I was completely sure that that was the final response, because I kept pushing them, but they said, no, we're not doing it. I did more research and realized there wasn't a single organization in the US dedicated to primary liver cancer. And I knew because of my sister's diagnosis, the trajectory of this particular cancer.
21:23.886
Mm.
21:28.938
I just realized that I had to do something about it. There's a great Lily Tomlin quote where she says, I realized somebody should do something about that and then I realized that somebody was me. And that's exactly what happened. And so I founded Blue Fairy in December of 2002 and we really started in 2003.
21:52.621
And what is Blue Fairy dedicated to? What's the work that you're doing through the organization?
21:57.866
Blue Fairy's mission is to prevent, treat, and cure primary liver cancer, specifically hepatocellular carcinoma. It's also called HCC for short, through research, education, and advocacy.
22:14.989
And what, it's been a while since you've been doing this now for 20 years.
22:19.946
Yeah, I know. I haven't been doing it full time for 20 years. I should say that for a long time it was we started with with nothing. I mean, we had no money. And so for a long time, I hate to use the word hobby. That's not the right word. But it was sort of this side thing I did that gave all my time to because I wasn't I wasn't paid for most of that 20 years. In fact, I didn't become a full time employee until four years ago or so.
22:25.55
Yeah.
22:30.189
Yeah.
22:49.354
But it took a long time to really gain traction. But just when I would think about giving up, my phone would ring and it would be a call from a patient or a family member asking questions. And it just felt like every time that I sort of hit a wall, I was like, I can't do this anymore. Someone would reach out and ask for help. And it was like Adrian was sending people to me.
23:04.909
Hmm.
23:17.774
Yeah, I wanna talk about the advocacy part a little bit, and, cause when you were sharing your story, you said, first of all, you demonstrated having to advocate for her yourself, and you said, if I, I would do it differently now, had I know what I know now, I would do it differently. So I'm curious, what would you have done differently, and how has that informed us?
23:22.41
Yeah.
23:47.406
the advocacy trainings that you're doing, right? Like how, the teaching others to advocate for themselves.
23:54.794
Well, some of the things I would do differently is we always tell people to get a second opinion. And we did get a second opinion, but we got that second opinion after she had started treatment. And the treatment, especially now, first of all, there are a lot more options for advanced liver cancer now. They're still all palliative, they're not curative, but there are many more options. I mean, it's phenomenal what's happened over the last five or six years, especially.
24:01.583
Mm -hmm.
24:07.982
Hmm.
24:23.53
And, but before even starting treatment, I wish we had gotten that second opinion. I think by the time we got actually in that doctor's office, she had already had two rounds of treatment, I believe. And the other thing is if you have an advanced form of any kind of cancer, look at clinical trials. And I did start looking at clinical trials, but not until a little bit later. And I wish I had looked at clinical trials immediately.
24:37.742
Mm -hmm.
24:52.938
Now we had a barrier that is much better than it used to be. thanks to the work of some many young cancer survivors, but we had the barrier of technically she was not an adult. So even getting her into a clinical trial was a challenge just because of her age, which was ridiculous because she was a grown young woman. She was taller than me. She was bigger than me. I mean, she was fully grown, right? and that's less of a barrier now, but it's still a challenge. If you're a pediatric patient trying to get into a clinical trial.
25:14.703
Mm -hmm.
25:23.338
and the other thing I would do differently is I maybe would have asked different questions because the first pediatric oncologist we had was awful. He was terrible. And his way of telling us these drugs aren't really going to do anything for her was, this is a quote, now would be the time to take a vacation, go to Hawaii. And it was like, what?
25:38.511
Mm.
25:49.77
Like I didn't understand that that was his way of saying, yeah, look at your eyes. I love it. That was, that was his way of saying we, she doesn't have a lot of time left. Like we don't have anything to actually treat this. And I think doctors are getting better about that now. Another thing I always say to patients, you need to ask the doctor with again, with liver cancer specifically is, are the drugs you're giving me curative or are they palliative?
25:54.448
Steve Hoof.
26:04.496
Mm -hmm.
26:17.45
because I need to know because people will make different decisions and most people assume if you get a disease and your doctor gives you medication for it then the goal is cure when the doctors know whether or not those drugs are curative. They know and they can tell you but you have to ask.
26:30.032
Mm -hmm. Mm -hmm.
26:41.009
Well, yeah, I think that, excuse me, I think that, you know, the way that I was raised was sort of like, you grow up with like, doctors are the experts, right? They know all the stuff. And, you know, and for me, it's like, I'm an immigrant from Dominican Republic, so that like, reverence is even more so there. And so,
26:54.954
Yeah.
27:04.586
Yeah
27:10.288
it's not part of the culture to have to advocate for yourself when you're in these environments that the instinct is to trust what they're saying, because they're the experts, right? But it's crazy how much advocating you have to do within our medical system. And if you don't know, so the work that you're doing is great because you're essentially teaching people how to advocate for themselves, I think. And...
And that's a skill set that we don't learn, right? We don't know where to go when this kind of stuff happens.
27:45.258
Yeah, and it's a transferable skill set too. I mean, if you can advocate for your health and you can advocate for yourself and other parts of your life.
27:54.191
Yeah, yeah, that's a really good point. So what's next for Blue Fairy? What are you working on achieving in the next couple years, five years, decades?
28:10.466
my goodness. Well, there's a lot ahead of us because unfortunately liver cancer is going to overtake I think both breast and colon to be one of the top cancers in the US by 2040. It is one of the most common, yeah, it is one of the most common cancers worldwide and it's the third deadliest cause of cancer deaths worldwide. So it's not going anywhere anytime soon.
28:26.415
Really?
28:39.087
And in my, if, this is the first time I'm hearing this. Is something, like, am I missing something or are people just not aware of that?
28:48.074
I would say people just aren't aware of that. And also liver cancer is really complex and typically, not everybody, but most patients have an underlying liver disease. And so I think most people connect alcoholism to liver cancer. I know that we certainly did. Like when the doctors told me she had liver cancer, I was like, what? Like the only thing I could think of was, you know, not that I thought my sister was a drinker, but that was the only connection I knew when in fact the more common causes of liver cancer.
29:04.08
Mm.
29:17.066
are hepatitis B, especially in Asian countries, hepatitis C, which is very prominent in baby boomers. It's kind of the last generation here in the US because there are curative drugs for Hep C now. There is still alcoholism, of course, and also fatty liver disease. And that is becoming the number one cause of liver cancer.
And what I mean by that, just so a doctor doesn't slap my hand, is fatty liver disease can cause your liver to become cirrhotic, so scarring, and it's that cirrhosis of the liver that can lead to liver cancer. So if you have fatty liver disease, it doesn't mean you'll get liver cancer, but your risk has gone up astronomically for liver cancer. What leads to fatty liver disease? Obesity. You know.
30:06.93
Hmm.
30:11.946
There are a lot of fancy terms the doctors have for it, but if you corner them one -on -one in a room, they'll say, yeah, it's because, you know, as a country, as a nation, as the world, you know, it's not just limited to the US or even Western countries. We're becoming heavier than we should be, than our bodies can handle. And I think what a lot of people don't know about the liver, I don't even know if I knew this when my sister was diagnosed, the liver processes everything.
30:26.482
Yeah.
30:41.642
you take in your body goes through your liver. It's the filter. Its job is to remove toxins. And so every single thing you put in your body goes through your liver. And also the reason so many people are diagnosed very late is because our liver doesn't have pain receptors. So when my sister was diagnosed, it was because her liver had gotten so large, it was actually pressing on her diaphragm. And that's why she kept saying, I can't breathe. I can't breathe. It was that.
30:43.218
Yeah, it's the filter.
31:10.762
pressing on her diaphragm. And so often when liver cancer is caught early, which is when you have to catch it if you want to cure it, it's an accident. You know, a lot of I hear so many stories where I would got a scan for something totally unrelated and they saw a lesion on my liver. Yeah, so it's scary. I don't think I answered your initial question. I went down the liver cancer rabbit hole, but.
31:27.347
Mm -hmm.
31:32.691
It's something.
Yeah, yeah, yeah, it was a good rabbit hole. No, and I think it was such an important, you know, sidetrack because you're right, it is such a problem. And we've done a couple of episodes here on health and wellness. And so we've touched on some of the stuff before on the show.
31:37.546
Okay, good, all right. Liver cancer 101.
32:02.61
But it makes sense why that is growing so rapidly when we are getting larger and larger and the stuff that we're eating is just crappier and crappier and that, you know, there's more toxins in our lives. And so it just makes perfect sense that that is, you know, so I'm glad that you took that moment so that people have that awareness of yet another reason why you need to.
be serious about your health and getting the stuff under control. But, so, answer my initial question, do you guys have, are you working or anything?
32:46.346
Yes, so we have a lot of programs. We have our patient resource guides, which are free. They've been in over 700 treatment centers in the US alone and we ship worldwide for free. So they've been in multiple countries and they're in English, Spanish and Chinese. And so that was a priority from the very beginning was the educational component of it. Because when Adrian was diagnosed, I was given these one sheets on the chemotherapy and nothing about the cancer.
32:57.777
Mmm.
33:15.402
And so I actually said to the surgeon who did her biopsy, I said, these one sheets are great, but I want to understand the disease. And he was so sweet. He made copies from his medical textbooks. And here I was, I did have a degree, although not in science, and had a BA. And I felt like I was reading a foreign language. And that's always stuck in the back of my mind was this, there needs to be some real patient education here. So.
33:38.61
Yeah.
33:43.818
We make sure all of our patient education is really friendly at a seventh grade level, which is the average reading level for Americans. And so we started with that piece, which we've always had. Then we also have a lot of different programs. We have our Love Your Liver program, which is the one that focuses on the prevention part of our mission. So with Love Your Liver, we're really focusing on at -risk, underserved populations, at -risk for liver disease.
so that they can manage it and also be aware that if you have underlying liver disease, you are now at risk for liver cancer and what to do about that. So that program has three campaigns throughout the year. We do a campaign during February for Black History Month. We do a campaign in May for Asian American Pacific Islander Heritage Month. And then we have a campaign coming up in the fall for Hispanic Heritage Month. And for the non -English campaigns, everything is in native language.
34:13.554
Hmm.
34:42.538
And we have a combination of virtual and in -person workshops. We also have the Truth About Liver Cancer. We have another program that just launched a month ago titled You and Liver Cancer. We have lots going on, yes, lots. And we have a fantastic community for patients and caregivers. It's not a Facebook group. I'm not a fan of putting your health data on Facebook because people don't seem to understand that.
35:00.466
Yeah, yeah.
35:11.338
Mark Zuckerberg doesn't care about HIPAA compliance at all. And so your data is not safe. And so we have a HIPAA compliant group that's private, that's very easy to use. So it kind of feels like Facebook, but your health data is safe there. And that community is in English, Spanish, and Portuguese.
35:36.914
Wow, wow, wow, I'm very, very impressed, Andrea. And, you know, I just, I think that, I think you're doing great work and really honoring your sister. And, you know, it's so beautiful that you were able to turn all that grief into making such an impact and providing these services for people. Yeah, you're welcome.
35:40.298
Thank you.
35:59.146
Thank you. Appreciate that.
36:03.731
Let's pivot now to your book because you also wrote a book out of your experience, right?
36:10.41
I did the book is titled better off bald alive in 147 days and it's a medical memoir documenting those that 147 day journey with my sister and but it also covers the seven years of my life that I was raising her. And so I kind of use flashbacks woven throughout. So you see what life was like before cancer. But the story is told very much present in her journey.
And for example, day one is chapter one. So all the chapters are by days. And so there's no, I never wanted to fool the reader. I mean, the reader goes in knowing that Adrian's going to die. And some of my favorite reviews are either it's a love story between sisters, which it absolutely is. And then some of my other favorite reviews are people who said, I finished the book.
36:44.946
Hmm.
36:54.738
Hmm.
37:03.602
Mm.
37:09.45
but I stopped at day 138 because I knew what was coming. You know, I put the book down for a month and picked it back up because I knew what was coming and I just didn't want it to happen. And, and it was, you know, it was a very special time because Adrienne realized she was dying way before I did. And she was a prolific writer and she kept an online journal that she started before she got sick and continued writing in it until weeks before she died.
37:14.898
you
37:21.554
Yeah.
37:29.682
Hmm.
37:38.794
And so by day three I introduced her point of view and then you see my point of view and there's this, this amazing sort of apex, probably not the best word, but if you will, where after her fourth round of chemo, I thought she was doing better because we were in and out of the hospital and everything went right. Like everything went perfectly, couldn't have gone smoother. She wasn't in pain and she knew in that moment that she, the tumors were worse.
And by the time we got a CAT scan again, she was absolutely right. So I was on this high thinking she was doing better. And exactly the same time she wrote in her journal, she knew she was dying. And so, yeah, so you really see her point of view as the patient and also sticking up for herself and things that she wanted. And then you see my point of view as the caregiver and the parent and the guardian and things that I had to go through and fight.
38:21.618
Wow.
38:40.33
That was the quietest sneeze or cough I ever heard in my life. I just want to say, I know you're going to cut that out, but I was like, how the hell did he do that?
38:44.466
Well, I muted the mic. I try to mute the mic when I'm gonna go.
38:55.626
That was gorgeous, that was funny.
38:57.717
Okay, so were you always a writer?
39:04.106
Yeah, I was. I was. I love writing. I was always a writer. I had actually written a play in Hollywood and directed and produced it. And when my sister was diagnosed, I was making not a living, but at least a little bit of a living directing theater in Los Angeles. And in fact, in fact, when she was diagnosed, I just had a show that opened and I called my stage manager and I said, the show's yours. Adrienne's in the hospital. I'm not coming back. And I never went back to the show.
39:14.708
you
39:38.036
Yeah, because it struck me how creative the format was for the book in the chapters being the days and having her perspective and your perspective both in the same, it provides for a very rich experience, I think.
39:56.01
Yeah, thank you. Thank you. And not everybody likes the details, but I did not want to leave things out because I read every single day and I read a lot of cancer memoirs and I felt like most of them left out the bad stuff because they were trying so hard to be uplifting and positive. And it's like, but you can't leave out the bad stuff. You need to see, you need to see the good and the bad and the ugly and, and
39:59.127
Yeah.
40:04.79
Yeah.
40:14.55
Mm -hmm.
Yeah.
40:25.45
You know, it's very raw, my medical memoir. And again, it's not for everybody, but it's definitely a true experience. And it's interesting because I didn't know how John would react to it. I didn't even think he'd want to read it. Our relationship ended two years after Adrian died and we're not friends, but he wanted to read the book. So I sent it to him and he's one of the few names in the entire book I did not change.
40:49.27
Mm.
40:53.386
because she had a special nickname for him and I was like that needs to be part of it. So I did not change his name. I didn't hide who he was. And he sent me a message on Instagram after he read the book. He read it in one sitting. He stayed up all night and he said every word you wrote is true. That's exactly how it happened. That's exactly how I remember it. And that made me feel really good that he, because
I wrote about the issues that he and I had too, you know, as a family and the problems we had. I mean, that was part of the dynamic, but he said, yeah, everything you wrote is true. That's how it happened.
41:27.926
Mm -hmm.
41:37.142
Wow. And you have another book now that you're working on now or is coming out soon.
41:40.81
Yeah. Yeah. So, just had another book come out. And as I mentioned, my sister was a prolific writer and she kept journals. She was also a really talented artist and her artwork has been hung in three LA galleries and she was a poet. And so I am only the editor of the book. She is the author. So we published her journals.
42:05.526
Hmm.
42:06.954
And it's basically it's her journals, it's her artwork, it's poetry, and it begins a year before her diagnosis. And again, the journals go up into just a few weeks before she died, but this is a hundred percent her in her own words. And you see this very abrupt change when she's kind of having normal teenage problems, you know, loves her boyfriend, but they're fighting, you know, just kind of school things. I need to study, I need to do this.
And then there's this abrupt change and she comes back and she goes, guys, I'm sorry. I've been gone for three weeks, but I was diagnosed with hip has a little carcinoma and this is what this means. And then you see this transformation where she, like I said, I think she realized early on, she didn't have a lot of time left. Like I think she just knew and she made a bucket list and I could not call it that at the time, but I knew that's what she was doing. And she was like, this is everything I've ever wanted to do.
42:36.502
Mm -hmm.
42:56.534
Mm -hmm.
43:05.642
I want to tackle it. And so she met her favorite rock star, Dave Navarro of Jane's Addiction. She met him not once, but twice. And, and I think people think I was the driving factor. And behind that I was not, that was all her. I just helped her however I could. And so she just had this bucket list and we did, we did almost every single thing she wanted to do on that bucket list.
43:33.398
wow, that's such a great, that's so great. So.
43:34.73
Yeah.
43:38.73
may I mention one more thing? I forgot all the proceeds of Adrian's book, which is titled I'd Rather Be Dead Than Deaf, A Young Woman's Journey with Liver Cancer. All the proceeds go to Blue Fairy. So Blue Fairy is a publisher of record and all the proceeds go to Blue Fairy. And I did get a little grief on the title from a few book bloggers. And I was like, well, then don't read the book, you know. But that is what Adrian said to me and to her pediatric oncologist.
43:42.39
Yeah, yeah.
43:53.234
you
44:08.586
when she first started chemotherapy, they knew one of the drugs would cause hearing loss. It's a known side effect of this drug. And she lost her mind. And that was another example of her advocating for herself. And she just said to me and to the doctor, I'd rather be dead than deaf. And so we made a promise to her that if she had any hearing loss, we would quit that drug. And after only two rounds, she started to have hearing loss. And she was like, I'm done. I'm out. Find another drug. Not doing that one again.
44:33.046
Mm.
44:38.474
And so I think you really, her spirit really comes through in her book. It's because it's her words.
44:45.854
And where can people find a book?
44:47.914
Amazon of course, anywhere you buy books, Barnes & Noble, Google. Right now we only at the time of this recording have the paperback and hardback. We'll have the ebook soon. The ebook was a lot more challenging than we anticipated because the sheer amount of artwork in the book. But we'll have it soon.
45:06.198
Mmm.
45:10.006
And as we wrap up.
Like how are you? Like how are you doing? What's your life like now? I mean, I know you're doing all this amazing stuff, but I just, I don't wanna just check in on you.
45:23.37
Ngh!
45:27.114
I have good days and I have bad days. It really depends. It's very challenging. I miss her every single day. I don't think time heals all wounds. Time just helps you get used to those wounds. I had a friend who said once, who lost her sister to cancer, she said it's kind of like you lose an arm and you don't get the arm back, but you just learn to live without having the arm. And to me, that's what...
that loss is like. I lost my sister, but I also lost my child. I was the first person to hold my sister after she was born because it was a cesarean, so my mom was still under and my mom made sure I was there so I could hold her. And I was holding my sister when she died in my arms. And I've never, and I may get choked up here, but I've never loved anyone the way I loved Adrian and still love Adrian. You know, I never, it's nobody's,
45:57.558
Mm -hmm.
46:27.37
Nobody's come close, you know, that complete and total unconditional love that I feel parents should have for their children, but I don't think most parents actually do have for their children, you know, not, not dissing on parents, but, but, but I, and I'm not saying she was a perfect kid. She wasn't a perfect kid. She made mistakes, but, but I just loved every ounce of her being. And, and that's why.
46:31.158
Yeah.
46:54.761
As I mentioned earlier, some of my favorite reviews of the book are that it's a love story between sisters.
47:03.654
Well, Andrea, thank you so much for coming by and sharing your story, sharing Adrienne with us, sharing the work that you're doing to carry out her legacy and the awareness of things that we have to pay attention to in our health.
47:26.026
Yeah.
47:27.894
You know, thank you for all of it. Just, it's been a lovely time talking to you, even though it was, you know, a sad story. I just, it really filled my heart to get to know her through you.
47:40.874
Well, thank you so much for having me, Gary, and for letting me share the story.
47:47.542
Absolutely. Talk to you soon.
47:53.686
Yay!
47:53.834
Hahaha!