GAR 60 | Better Off Bald

 

Andrea Wilson Woods’ book, Better Off Bald: A Life in 147 Days, chronicles Andrea’s sister Adrienne’s remarkable life from the time she was born to the day she died at age fifteen from Stage IV liver cancer. Andrea is a patient advocate who funded the non-profit called Blue-Faery: The Adrienne Wilson Liver Cancer Association, and she is also the Co-founder and CEO of Cancer University, a for-profit, social-benefit, digital health company.

 

IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:

  • How Andrea ended up with custody of Adrienne.
  • The greatest lesson Adrienne taught Andrea.
  • That more options are now available to patients with liver cancer.
  • Why Andrea founded Cancer University

 

SOME QUESTIONS IRENE ASKS ANDREA:

  • What is the difference between palliative care and hospice?
  • Is there a right or wrong way to grieve?  Does grief have a timeline?
  • Why are you so passionate about the importance of empowering cancer patients and their caregivers to become advocates for themselves?

Listen to the podcast here

 

Andrea Wilson Woods – Author Of Better Off Bald: A Life In 147 Days. CEO And Co-founder Of Cancer University, President And Founder Of Blue Faery: The Adrienne Wilson Liver Cancer Association

 

 

 

 

 

Thanks for joining me for what is going to be another interesting and very special interview. It is such a thrill and a true delight to be here with you, introducing you to the enlightening insights of gifted healers, mediums, grief and trauma specialists, and amazing people with inspiring stories to share. Make sure to follow us and like us on social at @IreneSWeinberg on Instagram, Facebook, and Twitter.

It is my pleasure to introduce all of you to an incredibly inspiring, very special person, Andrea Wilson Woods, an author whose non-fiction writing has won national awards. She is the author of Better Off Bald: A Life in 147 Days, which chronicles Andrea’s sister Adrienne’s remarkable life from the time she was born to the day she died at age fifteen from Stage 4 liver cancer. Andrea is a patient advocate who founded a nonprofit called Blue Faery: The Adrienne Wilson Liver Cancer Association. She’s also the cofounder and CEO of Cancer University, a for-profit social benefit digital health company.

Welcome, Andrea, to the show. You have so much to share with all of us. This is surely going to be a fascinating interview. Let’s begin with this question about you and your sister, Adrienne, whom you wrote about in your book Better Off Bald: A Life in 147 Days. Please tell us how you ended up with custody of your sister, Adrienne, from your mom. How did your relationship with Adrienne evolve over time?

Before I answer the question, thank you for having me, Irene. I appreciate it. I’m so thrilled and delighted to be here. The way I got custody of Adrienne was she came out to visit me in Los Angeles. That’s where I moved after I graduated from high school. I went to college there and I stayed. She was visiting me for what was supposed to be a two-week Christmas vacation in December of 1994.

The day after Christmas, my mother called and said she didn’t want to be a mother anymore. She had been struggling. My mother was a prescription drug addict and I didn’t recognize that in high school. She had lost her job. She had been a nurse and had lost her nursing license. She had been moving my sister around a lot. At that point, her life was very unstable. It was also a few days before her 50th birthday, so I don’t know if it was a combination of a midlife crisis as well, but she didn’t want to be a mother anymore and she did not want me to put my sister back on the plane to go home.

I was 22 years old and my sister was 8. Having seen what had happened over the last two years at that point with my sister and being moved and shuffled around from one state to another, I told my mother, “If I take her now, I’m not going to give her back. I will fight you for custody.” My mother was like, “Yeah, whatever.” That’s what ended up happening. I took physical custody immediately, and we eventually went to court. I fought for legal custody and I won.

Where were you originally from?

I grew up all over the Southeast. I was an Air Force brat, and then my parents divorced. Adrienne and I have the same mother but different fathers. My mother was engaged to Adrienne’s father, but he died in a very tragic car accident. My mother and I then moved to Alabama, which is where my mother’s from. I went to high school in Birmingham, and that’s where Adrienne was born.

Add a lot of unresolved grief to all your mother’s other issues.

A lot of unresolved grief. Absolutely.

Talk about grief. Look what you inherited with all of that. That’s very difficult. Facing the fight of her life, Adrienne discovered how much she wanted to live. Can you tell us about that?

When Adrienne was diagnosed, she made this bucket list. She didn’t show it to me. I never acknowledged it. Subconsciously, I understood what she was doing, but she made a list of everything she’d ever wanted to do and made things happen. By the second month of her illness, she was meeting her favorite musician, Dave Navarro of Jane’s Addiction. That’s because she found out he was going to be on The Tonight Show, which at that time was still hosted by Jay Leno and was still being taped in Burbank, California, which is where we lived.

Before I knew it, she and her boyfriend had gotten 8 tickets to the show for the 3 of us. She did things like that. It was like, “I want to do this. I want to do that.” When she would go to the hospital for her chemo, she would tell the doctors and nurses, “I have to be out by this day because I’ve got things to do. I have plans.” I think she knew.

You say your sister was one of the most inspiring people you’ve ever known. What’s the greatest lesson she taught you?

She taught me to embrace the life that you have and, without a doubt, live in the moment. You can’t change the past. You can’t even change what happened yesterday. You have to move on. I’m a little sad to say that for ten years, I didn’t take that lesson to heart. I had a hard time. There’s a difference between letting go of the past and not dwelling on it. It took me so long because I was so deep in my grief to start living in the present and looking forward to things, but I do take that to heart now. I do take a lot more risk than I used to. I do reach out to people more, but I was grieving for a very long time.

You had so much to grieve. Not only did you have with Adrienne, but the situation with your mom and with your dad. You had a layer on layer. It must have been so hard. Have you felt Adrienne around you since she died?

I did initially for about 6 months to 1 year in the house. Adrienne died at home. I feel like that’s one of the best gifts I gave her. I fought her doctors to get her home. I made sure she was never on a respirator. She died at home surrounded by people who loved her, not in pain or hooked up to any machines whatsoever. I felt her presence. I wrote the first draft of the book in her room and it was very special.

Did she know you were doing that?

I don’t know, but I felt her there. We turned the room into a guest room in the house, but it was everyone’s favorite room in the whole house because it felt like there was a presence there. I don’t feel her around me as much anymore, but I do talk to her a lot more than I used to.

She’s probably very busy.

That’s what I tell myself. Whatever plane of existence she’s on, I tell myself that a year there might be a day there, so for her, she’s only been gone for two and a half weeks.

Wherever she was, she was having a blast.

Yeah. She’s busy right now.

Let’s continue with this question. You lost the most important person in your life to a devastating disease. Have you discovered a right or wrong way to grieve? I know you talk about the fact that for so many years it was so hard for you to let go. Does grief have a timeline?

No. I would never pretend to tell someone else how to grieve. Grief doesn’t have a timeline. You have to figure out what works for you. I remember one time I saw a Dr. Phil episode, and he was telling this woman that what she was doing was destroying her life because she still had her son’s room and she still had his things. He died very young and he was pushing this woman so hard.

Grief doesn't have a timeline. You have to figure out what works for you. Share on X

The harder someone pushes you like that, especially when it’s a child, the more you resist. There were people in my life who did not understand and those in my life who gave me the space I needed. I did need a lot of space. I haven’t let go, but I’ve moved forward. That’s not easy to do. Do you know what I mean?

I understand that, yes. They talk a lot about stages of grief and all of that. One stage is when you still have one foot in the past, but you are moving. You’re peeking your head out of that hole and going forward, and it’s hard. Did your friendships change after you lost Adrienne?

They did. I have lost every friend I had.

Every friend you had?

Yes. I had a very close-knit group of friends when I was raising Adrienne. We called them our aunts and uncles. They are in the book and I’ve changed all their names. One by one, some people dropped off immediately within a year and some people took a few more years, but I lost all the friends. There was only one friendship that I purposely and intentionally ended because it was in my best interest.

For you, it was like a toxic friendship.

It was. Over time it became toxic for reasons that were completely unrelated to Adrienne dying. In all the other friendships, some people faded away, walked away, disappeared, or stopped calling. My best friend from high school never spoke to me again until I saw her at a high school reunion. It was devastating for me. Losing those friendships was almost as difficult as losing Adrienne.

That’s more grief. No wonder it’s been so hard for you. Now you’re grieving friendships on top of that. Did your friend from high school say anything to you or did she avoid you?

I was the chair of the committee, so she did avoid me. I was polite to her because I was the chair. I wasn’t going to be a jerk, but we don’t have any relationship whatsoever. When I needed her most, she disappeared.

Do you think it’s because she couldn’t handle it?

Yes.

I think a lot of people become so uncomfortable. They don’t know what to say, they don’t know what to do, so they just disappear, or they can’t understand it. Let me ask you, for those in our audience who have friends who are grieving, what advice would you give them?

I listened to one of your episodes. It was earlier in 2019. It was a woman who founded a grief counseling service via text.

I know exactly what you’re talking about.

I think that a lot of the people I was friends with could have used something like that because I couldn’t comfort them. I needed them to comfort me and I wasn’t able to comfort them, although I tried my best. That first year, I put on a fake smile for everybody. I tried so hard. After a year, I couldn’t do it anymore. Something like that.

Just know that the person who experienced the loss, it’s not their job to comfort you. Sorry, you have to go outside. You need to go find your grief counselor or whatever. The person who’s experiencing the great loss, they can’t. They’re incapable of doing it. Part of the issue was that I was always the leader in my circle of friends. I was always the organizer. I was always the point person for absolutely everything. Without me being on my game, my friends didn’t know what to do.

They couldn’t relate to you. It was a different person they were relating to in a way.

They didn’t know what to do when I was no longer me, if you will.

I have found in my own life, too, that sometimes if I’m going through something and I change in some ways, people get angry with me. It sounds like you and I are the same. They count on me for the role I play in their lives. When I’m overwhelmed that I can’t quite do it at that moment, they get annoyed. They get mad.

Dr. Sue said, “Those who matter don’t mind and those who mind don’t matter.” That’s how I make my friends now. I’ve made much better friends now in my 40s, and they’re much deeper friendships. I look for people who like me no matter what. No matter what kind of mood I’m in or how I’m feeling, they like me no matter what.

It’s about acceptance, not judgment. Emma talks a lot about that. I’m going to connect you two guys because she’s a wonderful person. Her text messaging service, we talked a lot about that and that is very helpful for people who don’t know what to do. Could you tell us about Blue Faery and Cancer University, including why you’re so passionate about the importance of empowering cancer patients and their caregivers to become advocates for themselves?

How much time do we have?

Go for it.

I’ll start with Blue Faery. About a year after Adrienne died, like I said, I couldn’t fake it anymore. I was at my wit’s end. I was looking for a way to channel my grief and that’s the way I handled it. I wanted to volunteer for what was, at that time, the largest liver disease organization in the US. I’m not going to say who they are because we have a good relationship with them, but at that time, they didn’t do anything with liver cancer. It came down to nobody doing anything about primary liver cancer anywhere in the US. Lily Tomlin has a great saying that went something like, “I realized somebody needed to do something about that and I realized that somebody was me.” That’s what happened.

I started a nonprofit when I was 30 and it is in Adrienne’s memory, so it’s Blue Faery: The Adrienne Wilson Liver Cancer Association. Our mission is to prevent, treat, and cure primary liver cancer, specifically hepatocellular carcinoma, which is by far the most common form of liver cancer, through research, education, and advocacy. We do a lot of patient education and advocacy, but we also have a research award that we give out every year on Adrienne’s birthday in April.

GAR 60 | Better Off Bald

Better Off Bald: The Blue Faery’s mission is to prevent, treat, and cure primary liver cancer, specifically hepatocellular carcinoma, the most common form of liver cancer.

 

We are a national organization. We have a bit of an international outreach because our website translates into ten other languages targeted at that liver cancer population. We ship our brochures anywhere in the world as long as we have a valid address. That can be a little bit of a problem in Africa, but otherwise, it’s been fine.

Our brochures are translated into Spanish and Chinese. Anytime a patient or caregiver calls, to this day, even though I have an incredible volunteer staff, I still take those phone calls personally, talk to them, and guide them through. We have an online HIPAA-compliant community specifically for patients and caregivers.

One of the things we also do very well is that we include caregivers in the conversation. We realize that caregivers tend to do the majority of the research, outreach and gathering of information. You have to include caregivers in the conversation. I’m happy to say that since my sister was diagnosed, especially in the last 2 to 3 years, there are a lot more options for patients with advanced liver cancer.

It’s still palliative care, but it’s an improvement for sure. People are being diagnosed with advanced liver cancer that is living for 3 years, sometimes 4 years which is phenomenal and very unusual. When my sister was diagnosed, that’s why it was called A Life in 147 Days because that’s how long she lived with the diagnosis. That was it.

I could understand how hard it is for caregivers. They’re grieving, too, and they’re going through all kinds of things. This organization, Blue Faery, when people donate to it, does this go towards research and helping find greater options for these patients and the caregivers dealing with this liver cancer?

Yes. It is a nonprofit, so all donations are 100% tax deductible and we are still 100% volunteer-driven. We keep our overhead incredibly low. We have two virtual offices, one in Los Angeles, California, because we’re still a California-based charity. One in Birmingham, Alabama, but that’s only because I’m based out of Birmingham, Alabama, now. Our medical advisory board is located all over the US. Our board of directors is all over the US. Thankfully, we have great technology that allows us to do that now.

How is Blue Faery different than Cancer University?

Cancer University came out of a pattern I was seeing with Blue Faery. When I was raising Adrienne, I was a teacher. After she died, I got my Master’s degree in Writing and I became an adjunct professor for a period of time. My background is in teaching and writing, and then I also became a certified coach. Also, the coaching element. I talk to patients and caregivers, so I was finding myself coaching them, and I still do pro bono to this day. When I got my coaching certification, I was even approached on LinkedIn to become a cancer coach. I did not want to charge people at the most difficult time in their lives to be a coach.

However, there’s no question that people need that extra help because even when people are given the best possible information, and we know there’s a lot of bad information out there, I can’t tell you how much doctors hate Dr. Google, as they call it. Even when patients have the best information, 95% of the time, I realized, didn’t know what to do with it. They would say, “Now what? What’s next?” It reminded me of my best friend from college. She was so obsessed when she was pregnant with her first child. She read What to Expect When You’re Expecting. She was so obsessed with her pregnancy. She never thought about what came next.

GAR 60 | Better Off Bald

Better Off Bald: Even when people are given the best possible information, there’s still a lot of bad information out there.

 

Seriously, after her son was born, and this was a year after Adrienne died and she knew how much I had raised Adrienne even when Adrienne was a baby. She looked at me and said, “What’s next?” I said, “What do you mean?” She goes, “I didn’t read the book about how to raise a baby.” She was stunned and still in shock. That’s what it is for patients and caregivers. You can be the most educated person on the planet. It doesn’t matter because you go into shock when you hear that C word.

You can be the most educated person on the planet. It doesn't matter because you go into shock when you hear that C word. Share on X

On top of that, you are expected to make these very rational and intelligent decisions about treatment sometimes within days. I had to make a decision within days. Doctors speak in acronyms. I called the alphabet soup of cancer. I was getting very frustrated by this. I didn’t want to become a cancer coach. It was clear to me that patients and caregivers needed coaching. They needed teaching and training.

I meditate every day and I chant every night, so I started meditating and chanting specifically on this. What is missing? There’s so much out there for cancer patients and caregivers, but clearly, something’s missing. I kept thinking, “You have to go back to school.” It hit me. It was like, “You need to go to Cancer University. That’s it.”

I ended up entering this entrepreneurial competition sponsored by Astellas, a farm school company in partnership with Robert Herjavec from Shark Tank. His mother died of ovarian cancer, so he’s very passionate about anything that helps with cancer care. I had nothing but a concept. I threw together a web page. I threw together a two-minute video because I came up with the idea and I was like, “This contest closes in two weeks.” Out of over 160 entries from 21 countries, I got in the top 10, which was phenomenal. I then got to interview the Astellas executives. I knew I wasn’t going to make it to the finals because I didn’t have anything beyond concept. They loved it, they got it, and I knew I was onto something.

I spent six months vetting the idea. I spoke to patients, caregivers, survivors, and advocates of doctors, even people I trust in pharma. I have so many relationships that I’ve built over the years with my nonprofit. I kept coming to people and saying, “Is there a space for this? Does it make sense?” Every single person came back with yes. If I had gotten one no, I don’t think I would’ve done it because I knew it was going to be very difficult, but I didn’t get a single no.

That’s heart-wrenching. You’re dealing with these people who are panicked, “What do I do? I heard about you. I’m faced with all these life-changing decisions. I don’t even know where to start.”

As an LLC, I found a cofounder who has different strengths than I do and has a completely different background. That was helpful as well. We did a beta test. Now, we’re about to lock down a pilot. We’re signing the papers with one of the largest NCI centers in the country. The goal is we don’t want any cancer patients or caregivers to pay for the program.

If you go on the website, there’s the main website and the member website, you will see an option to pay. We don’t want you to because the people who save the most money when the patients are highly involved in your treatment decisions and you’re asking the right questions are the health insurance companies and the hospitals. Ultimately, we’re a B2B company. Our customers are health insurance companies, hospitals, and even pharmaceutical companies. However, the end users of our membership platform are cancer patients and caregivers.

I’m sure a lot of our audience are going, “Wow.” You hope they don’t need it, but in this world, many people do. If something like that happened to someone in my family, I’d make a beeline for someone like you. “Can you help? How do I do this? I’m feeling this emotion. I don’t know where to turn.” Do you get solicited a lot by these doctors, “Tell them to seek me out?”

I don’t think anyone’s asked us that yet. Doctors love it because they love the idea that all content’s curated. We have a patient and caregiver advocate board and we have a medical advisory board. All of our prerecorded courses tend to be longer content, 4 to 6 hours. They have video, audio, and worksheets.

All of that prerecorded content is done by our outside contractors, then it goes to our patient caregiver advocate board to review, and then it goes to our medical advisory board for that final medical review. Our workshops are more live workshops, webinars and trainings. It might be like meet the expert with a doctor.

Those are things we record live, but then they get stored as permanent content inside our membership library. It’s very much like an online university where based on your loved one’s diagnosis, that’s your major. For me, it would be liver cancer. I have to take the orientation. The orientation is our flagship course called The Proactive Patient. It’s a broad orientation to cancer.

One of the things I’m most proud of is that course by itself, that six-hour course puts you miles ahead of the average patient. If you only take our orientation, you will be so far ahead and so prepared. It’s broken down into bite-sized chunks. It’s not at a college level. It’s easy to understand. We also have a community as well.

Is it like a support community?

Yes. We have a support community as part of it and we’re still building it out. We’re working on an app because we’ve been asked about an app. We’re working on Spanish because we’ve been asked about Spanish. We’re still working on the technology, but it’s exciting.

Could you give me a few titles of other workshops that you have in the video so people get a flavor of what they can learn from? Do they also deal with the emotional issues of, “I’m exhausted, I’m grieving, I’m this, I’m that?”

I like that there are titles. I’m going to write them down right now. We have things like meet the expert. Those would be an expert from one of our partners. It might be a hospital we’re partnering with. They have an oncologist who wants to talk about a particular procedure or what his role is on the tumor board. We’re trying to break this down for people so they understand. We have a member spotlight, so that is a spotlight on an actual member who wants to share their story. We’re starting with our patient and caregiver advocate board members because they all are there and they want to share their stories.

I’m sure some of them are success stories, how you help them.

They are success stories and they’re amazing stories. It’s very interesting because there’s a mix of caregivers and a mix of patients. The patients are all survivors. The caregivers, some of the patients survived and some didn’t. It’s interesting. We have things for the core courses, so we do have core courses, which are like your general education requirements in college. Things like Nutrition 101, Palliative Care 200. That was a big one, too, that doctors asked about. Doctors don’t know how to talk about palliative care. They don’t know how to talk about hospice. Those two things are very different, but people get that confused all the time.

For our audience, why don’t you tell us the difference between palliative care and hospice?

Palliative care, you can have any time during your cancer journey. The whole goal of palliative care is to reduce suffering and it’s much more holistic. The idea is, “How can we reduce suffering? What are all the ways we could reduce suffering? Will physical therapy help your particular situation? Would massage help? Would herbal medications help as well?” It’s like, “How can we reduce suffering?”

GAR 60 | Better Off Bald

Better Off Bald: The whole goal of palliative care is to reduce suffering.

 

In hospice, however, you have to have been given a medical diagnosis when you have six months or less to live. You might be doing hospice at home. You might be doing it at a facility. You usually have a lot more options with hospice than you realize, and people don’t know that. With hospice, a doctor has gone on the record and said that he or she believes you have less than six months to live.

With hospice, I can use my grandfather as an example. He was in hospice, but it was not explained to my grandmother that she wasn’t supposed to call an ambulance because he was in hospice. The idea is that he will be at home and he will die at home and have a very peaceful death, but no one told her that. It’s these things that just fall through the cracks. This lack of education, no one thought to mention that to her. Someone intervened and told her, but had she called an ambulance, the EMTs would’ve had to resuscitate him.

They would’ve had to, but that defeats the whole purpose of hospice. I forget what the actual percentage is. It’s crazy high, the amount of money we spend as a country in the last eighteen months of life. It’s crazy. Patients have a true understanding of their disease. They know what stage they’re in. You’d be surprised how many people don’t, but they do know. When I’m speaking to a patient, I always ask them, “What is more important to you, how you live or how long you live?” There’s no wrong answer. It’s what’s right for you. A lot of that’s going to depend on where you are in life. A 32-year-old is probably going to have a different answer than an 82-year-old.

Yeah, but also, you’ll have an 82-year-old who’s still mad about the fact that she’s not going to see 90.

Of course. As long as you can answer that question, it doesn’t matter which answer you have, but answering that very basic question will help you determine your treatment if you’ve been given a terminal diagnosis.

That’s fascinating and that’s great information. I love the whole concept of that. I’m thinking already of different people whom we’ve already interviewed whom I should connect with you because you can help each other and help so many people.

I would love that.

What is your message about the importance of healing to share with our audience? You’ve done a lot of it on your own.

I think healing takes time, but it also comes from a place of self-love and I had to learn how to love myself.

That’s so true. Thank you. Our audience now all wants to reach you. Give them all your contact information and tell them how to get ahold of your book and how they can reach out to you.

To get the book, you can go to BetterOffBald.com. It will have all the links to all the retailers. In case you don’t like Amazon, there are other places you can buy the book. To reach me personally, you can go to AndreaWilsonWoods.com or I’m Andrea Wilson Woods on almost every social media outlet or @AndreaWilWoods if it’s Twitter or Instagram. For Blue Faery, go to BlueFaery.org. For Cancer University, it’s Cancer.University, that’s the actual extension. Also, I have a gift for your audience.

GAR 60 | Better Off Bald

Better Off Bald: A Life in 147 Days

I’m sure they’ll be delighted. What would that be?

I’d love to give them a free lifetime membership to Cancer U. Hopefully, they won’t need it, but if you or a loved one is a newly diagnosed cancer patient or you’re the caregiver of a newly diagnosed cancer patient, you can go to Cancer.University. Anywhere where you see the button “Apply Now,” click that button and you will immediately go to the membership application. When you scroll to the bottom, just click that little button that says, “I have a coupon code,” and put in your coupon code, which will be GRIEFANDREBIRTH. It will waive the fee.

What is your tip for finding joy in life?

I think it helps that joy is one of my core values. What that means to me is having fun and finding humor in any situation. I like to think that I taught Adrienne that as well because she always seemed to find humor. A joke in our house was from A League of Their Own, “There’s no crying in baseball.” A joke in our house was always like, “There’s no crying in whatever. There’s no crying during homework. There’s no crying during whatever.” It’s because I did not tolerate whining at all. It was a no-whining zone in the house.

When she was diagnosed, we would joke around when it was just the two of us, “There’s no crying during chemo. There’s no crying during this.” I think finding joy has to be important to you because sometimes you have to actively look for it. It’s not always easy. I do keep a gratitude journal and I do fill it out every single night. There are some days it’s very easy and other days where I’m like, “I’m thankful for today.” That’s all I put.

Finding joy should be important. Sometimes, you should actively look for it. It's not always easy. Share on X

For the change you’re making in so many people’s lives, many people would be grateful to you.

Thank you.

You’ve touched so many hearts on the show. I’m sure of it. Your journey with your sister and the way you’ve turned that tragedy into a blessing for so many, including yourself, is filled with lessons and inspiration for all of us. Make sure to follow us and like us on social at @IreneSWeinberg on Instagram, Facebook, and Twitter. Thanks again for joining us. As I like to say, to be continued. Bye for now.

 

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