The journey through a serious medical condition is never easy, but when the diagnosis is cancer, it can be downright harrowing. As a clinical psychologist and woman, I’ve personally known the deep pain of losing loved ones to cancer, and the challenges are surely intense. And for all the souls who have been through similar experiences, you know how taxing it can be physically, mentally, and spiritually. In this episode, Dr. Carla Manly is joined by Andrea Wilson Woods, a renowned patient advocate, author of the award-winning book, Better Off Bald: A Life in 147 Days, speaker, and founder of the nonprofit Blue Faery: The Adrienne Wilson Liver Cancer Association, will tell her story, increase our knowledge, and give us uplifting hope along the way. 

Topics discussed include cancer, cancer diagnosis, liver cancer, hepatitis A, hepatitis B, hepatitis C, biopsy, death, medical community, support, self-care, family, drug use, drug abuse, physicians, chemotherapy, suicidal, suicidality, and advocacy.

Please note that this episode may contain sensitive material; listener discretion is advised.

Emergency Assistance Note: If you or someone you know needs immediate support, please call your emergency services. In the US, 24/7 help is available by calling “911” or “988” (Suicide and Crisis Hotline). Support/informational links are in the show notes.

IMPORTANT DISCLAIMER: No expert in this (or any episode) is offering medical or psychological direction; the content is purely informational in nature. Please consult your physician or healthcare provider before undertaking any new regimen or procedure.

https://www.nami.org/support-education/nami-helpline/

Connect with Dr. Carla Manly:

Website: https://www.drcarlamanly.com

Instagram: https://www.instagram.com/drcarlamanly/

Twitter: https://www.twitter.com/drcarlamanly/

Facebook: https://www.facebook.com/drcarlamanly

LinkedIn: https://www.linkedin.com/in/carla-marie-manly-8682362b/

YouTube: https://www.youtube.com/@dr_carlamanly_imperfect_love

TikTok: https://www.tiktok.com/@dr_carla_manly

Books by Dr. Carla Manly:

Joy From Fear: Create the Life of Your Dreams by Making Fear Your Friend 

Date Smart: Transform Your Relationships and Love Fearlessly

Aging Joyfully: A Woman’s Guide to Optimal Health, Relationships, and Fulfillment for Her 50s and Beyond

The Joy of Imperfect Love: The Art of Creating Healthy, Securely Attached Relationships

Imperfect Love Relationship & Oracle Card Deck by Dr. Carla Manly:

Etsy

Amazon

Connect with Andrea Wilson Woods:

Website: https://andreawilsonwoods.com

Blue Faery: https://www.bluefaery.org/

Podcast: https://andreawilsonwoods.com/podcast/better-off-bald/better-bald-episode-1-before-adrienne/

Book: https://betteroffbald.com/

Instagram: https://www.instagram.com/andreawilwoods/

Facebook: https://www.facebook.com/AuthorAndreaWilsonWoods

LinkedIn: https://www.linkedin.com/in/andreawilsonwoods/

YouTube: https://www.youtube.com/c/AndreaWilsonWoods

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Harnessing the Power of Love to Fight Cancer with Expert Andrea Wilson Woods

Managing the Journey of Cancer with Love and Strength

The journey through a serious medical condition is never easy, but when the diagnosis is cancer, it can be downright harrowing. As a clinical psychologist and woman, I’ve personally known the deep pain of losing loved ones to cancer. The challenges are surely intense. And for all the souls who have been through similar experiences, you know how taxing it can be physically, mentally, and spiritually. Andrea Wilson Woods, a renowned patient advocate, author, speaker, and Founder of the nonprofit Blue Faery, will tell her story, increase our knowledge, and give us uplifting hope along the way.

We’ll focus on this reader’s real-life question. “My mom was diagnosed with cancer. I feel mad and overwhelmed. I’m not mad at her, but at the situation, because I’m an only child and my dad was never in the picture. I don’t know how to make time to give her the support she deserves, work, and care for myself. What scares me most is losing her. She’s my best friend. I can’t fall to pieces because she needs me. Do you have any ideas that will help me stay strong?” With that question as the focus of this episode, welcome to the show. Please note that as this episode contains sensitive information, reader discretion is advised.

I am joined by a delightful special guest, Andrea Wilson Woods. She is the Founder of Blue Faery: The Adrienne Wilson Liver Cancer Association. She’s also the author of the award-winning book, Better Off Bald: A Life in 147 Days. Welcome to the show, Andrea. It’s a delight to have you with us.

Thank you for having me.

It’s such a pleasure. Before we launch into the topic of this, would you tell our readers a little bit about what makes you you?

Sure. I am a sister, parent, friend, lover, daughter, and at my very core, storyteller. Everything I do revolves around storytelling, whether it’s speaking or being a patient advocate, or even doing comedy, which I’m dabbling in and writing. I love telling stories and hearing other people’s stories. 

The Genesis of Blue Faery and a Family’s Fight Against Liver Cancer

What a beautiful introduction to who you are. Thank you. You are surely a multifaceted human being. Before we get into the question of the day, if you don’t mind sharing a little bit about the Blue Faery, what that is, what your nonprofit is all about, and gently nudge us into whatever parts you want to share about your journey and your story. 

That’s an excellent question. I was mentally taking notes in my head. I’m the Founder of Blue Faery: The Adrienne Wilson Liver Cancer Association. Blue Faery’s mission is to prevent, treat, and cure primary liver cancer, specifically hepatocellular carcinoma, commonly known as HCC, through research, education, and advocacy.

We focus on the most common and most prevalent type of liver cancer. I started the organization in memory of my sister, Adrienne. When I was 22 years old. My sister was 8. She came to visit me in Los Angeles for what was supposed to be a two-week Christmas vacation. The day after Christmas, our mother called and said she didn’t want to be a mother anymore.

I had watched as my mother’s life had unraveled. She was a drug addict. She got caught shooting up morphine at work. She was a nurse, and she lost her nursing license. I saw the unraveling. I was sending money home. I told our mother at Christmas that if I took Adrienne, I wouldn’t give her back because our mother was refusing to get help for her addiction.

I got physical custody immediately and, overnight, became Adrienne’s primary caregiver. Eventually, I sued for legal custody and won. We had different fathers. Her father died before Adrienne was born, so she didn’t know him at all. I was the only family she had. I raised her all through my 20s until she was diagnosed with Stage 4 liver cancer 1 month after her 15th birthday. 

Thank you for that background. I’m so sorry for everything you experienced. There are so many layers there. You became a mother at 21. You became your sister’s mother. Can you tell us a little bit more about before your sister was diagnosed with cancer? What did that look like for you as such a young mother, fighting for custody of your sister? 

It was hard. It was a financial struggle. I, in no way, had my life together. I had my college degree, but that was it. She had been living with me for about five months when we had this very pivotal moment in our relationship. I had taken her out for her birthday. She turned nine. She lost her mind when the staff sang Happy Birthday to her. She turned into a two-year-old with a full-on temper tantrum. She was screaming, yelling, kicking, and hitting. It was awful. I dragged her out of the restaurant.

We went home, and I said, “That behavior is unacceptable. You can’t do that.” She started screaming at me that she didn’t want to live with me anymore and that she wanted to go home. I couldn’t tell her there was no one to go home to. I couldn’t tell her that I was it. At that moment, I trusted my gut, which I always encourage caregivers to do, and I called her bluff.

This was back in the day when you could call an airline, make a reservation, and they would hold it for 24 hours without payment, which is mindblowing when you think about it. That’s what I did. I called the airline right in front of her and made it seem like she was on a flight out the next day. Mind you, I had no way of paying for that ticket, but the whole idea was to call the bluff. I then went into the living room and waited. The hardest part was to wait, not give in, and hold my ground.

After an hour of yelling and throwing things around the room, she came out and said, “I don’t want to go, Sissy,” which is what she called me. I said, “You can stay, but we need to establish rules now. Number one, you’ll never act that way in public again,” and she never did. This set the boundaries for our relationship. I said, “I have to be your parent first, and then your sister. One day, when you grow up, I hope I’m your friend.” She said, “I got it. Parent, sister, and then friend.” That established the blueprint for our relationship.

What a strong 21-year-old you were to know how important it was. Many parents, regardless of their age, never learn the importance of creating that kind of safety, even when it’s tough. It’s tough to have that framework for those strong boundaries and to follow through so that the kiddo knows, regardless of what age they are.

I learned it because my parents didn’t do it.

Without shaming or blaming our parents, isn’t it lovely when we can learn from what they didn’t do well and create something that’s an improved version?

Exactly.

What a way to begin that journey. It also sounds as if maybe some reason she was acting out so early on was how difficult it would be to lose your mom overnight. Even if your mother wasn’t necessarily acting like a mother, but to lose that even false sense of safety and stability.

Our mother would not tell her. I had to tell her.

Grief’s Unending Echo: Understanding Loss and Love

What a shock. Let’s move forward. From what I know about you and your story, this topic is incredibly nuanced and painful. I would rather you guide the way on this one. I have a question for you.

Go ahead.

There are people I’ve lost to cancer whom I love dearly. I lost all three. As a psychologist, I tell people that we never stop grieving when we love someone. The grief gets softer. It laps at our feet less. Like waves coming in, it’s not overwhelming us, but it’s there. I’ve never truly ended the grieving cycle, and I don’t necessarily know that I would want to, because when it comes in, every now and again, it’s a reminder of the depth of that love. What do you think? How is that experience for you? 

It depends on the relationship. I’ve lost 7 family members to 5 different cancers. The very first loss was my paternal grandfather when I was seven. I barely remember him. I remember what he smelled like, because he smoked Lucky Strike cigarettes, and he called me Andy, which he’s the only person who ever gave me that nickname, but I was seven when he died. The most memorable thing was the funeral itself and what impression it made on me. It depends on the depth of the relationship.

I do agree. I don’t think grief has a timeline or a right or a wrong way. It ebbs and flows. I know for me, I didn’t experience anger when Adrienne was diagnosed or throughout her cancer journey because I didn’t know who to be angry at. It didn’t work for me. About seventeen years after she had died, I was watching this dumb show on Netflix of all things. They got canceled at the last minute, so they had to do an episode where they wrapped everything up. The whole storyline had to wrap up.

With the oldest daughter, all of a sudden, they were showing her graduating from high school and then college, and then this, and then that. I exploded. I was so angry for about 3 to 5 solid minutes. I was infuriated that this fictional character on the screen got to do all these things that my sister didn’t get to do, because she loves school. She was looking forward to going to college. She had all these big dreams. I was shocked afterwards, like, “Where did that come from?” I agree with you. You don’t know. The loss is a loss.

“Better Off Bald” & Patient Advocacy: A Candid Look at Cancer and Fighting for Care

I agree with all of it, but especially, it’s the depth of the connection and the depth of that love that you felt. If it’s someone you know peripherally or only for a bit, you wouldn’t necessarily feel that heavy, saturating loss that comes with someone that you’ve known for a long time and had a long, loving relationship with. Thank you. If you don’t mind, tell us a little bit about your book.

I wrote Better Off Bald because, of all the cancer memoirs I had read, I was dissatisfied by how the hard stuff was glossed over. I didn’t want to gloss over the hard stuff. I kept a medical diary the entire time Adrienne was sick. She was also a prolific writer herself. I structured it like a journal. Day one is chapter one. Flashbacks fill in the seven years before cancer entered our lives. It is this seven-year period in my life, but the plot is along the lines of her cancer journey.

By day three, the chapters open up with a quote from her during that time. You get to see what a different perspective she had as a patient versus me as her primary caregiver, her parent, and her sister. There was one point where I thought she was getting better, and she knew at that point she was going to die, but she didn’t tell me. I don’t hold back. I’ve gotten some criticism. I love reviews that say I’m a mean person. I’m like, “If advocating for my sister and what she wanted is mean, then I’m mean. I’m fine with that. No problem.”

For once, I’m speechless. That’s hard. I’m not certain why the reviews would be negative when all you are doing is being honest and straightforward.

It’s people who haven’t been down that road yet. They haven’t had that kind of experience. They don’t know how hard it is to stand up to the medical establishment and fight for what your loved one wants. I tell caregivers all the time, “It’s not your job to be liked. Let them like your loved one, your patient, your spouse, or whoever it is. That’s not your job. Your job is to stand up for what the patient wants so they can focus on getting well.”

It is sad because the way our system is, sometimes, the person who is in the most pain and is suffering the most, which is the patient, can’t advocate for themselves. They’re exhausted. They’re scared. They’re not Googling the next steps. They’re lucky sometimes if they can put one foot in front of the other. When the medical community is supposed to be benevolent, wise, and kind, sometimes, they are jumping through the hoops that they feel are appropriate or whatever they’re accustomed to.

I’ve been in that position of being that advocate once. I was almost forced out of the emergency room because the physician didn’t like that I wanted them to review the medication the person was on that landed them in the emergency room. It was causing hypotensive incidents, which is one thing if you are young and another if you are older or not young and don’t have all of the resources. It’s that part.

A dear friend of mine was suffering from cancer. She’s now gone. She asked me to go in and be her advocate. She was a strong, ferocious woman, but she had so little strength that I had that responsibility and that privilege of going in with her and being her advocate. Not everyone is that lucky to have an advocate. It’s not an enviable position. It sounds like you and I, our set point is kindness and gentleness. We don’t want to have to get tough. That’s the hard part about medical systems. You almost always need to have an advocate, or the medical community will take the path of least resistance. I’m not saying everybody is like that.

I agree. Some of the nurses who liked us would tell me this privately. These were the first two weeks at the Children’s Hospital Los Angeles. They would say, “Everyone loves Adrienne. They think she’s so funny.” She came in with her blue hair and all this metal jewelry. She was cracking jokes. They were then like, “A lot of them don’t like the sister,” which was what they called me because I asked too many questions and things like that. I’m like, “Who cares? I don’t care. I love that they like her. That’s great. They don’t need to like me. It is not my job to be liked.”

One of my favorite phrases is asking questions. I’m a firm believer that asking questions is a critical element of life. We’re not manufacturing questions to get attention. We’re not talking about that. We’re talking about coming up with questions that help you understand the process, help you hold people accountable, and have people look at another perspective.

I’m usually very judicious with my use of the word should, but in this case, I believe we should all be able to ask questions. If somebody on the other side isn’t able to tolerate the questions, which are a key part, especially of a medical journey, wanting to understand and wanting to have safety and security about this difficult process, that says a lot about who they are. 

Ask questions and demand answers. Even in medical situations where the doctor says, “I don’t know the answer, that’s an honest answer. The best doctors, the ones that I know so well, are not afraid to admit if they don’t have all the answers. They’re not afraid to be brutally honest about it. It’s critical.

Not knowing, I learned that lesson back in college when I was doing student teaching to get my teaching credential. I was in a class with 30 gifted 3rd and 4th-graders. I had complete humility. Most of the time, when you have these 30 intelligent brains coming at you, I’d be like, “I don’t know. Let’s look it up.” I’ve carried with me that gift of being able to say, “I don’t know. Let’s look it up.” To me, that is a sign of both intelligence and wisdom. It’s okay.

Especially when you’re thinking about something like what you encountered with your sister’s cancer, for a clinician or a doctor to be able to say, “I don’t know, but maybe we can dig up some research on that. I don’t know, but I’ll talk to this other specialist I know,” gives comfort. It gives security. It adds genuineness to the relationship. Thank you for sharing how important that piece is. It is a critical piece. I also like how you painted a picture of your sister. Is that where the name Blue Faery came from? Is it her blue hair, or is it something else? 

It did come from that. I wanted her name as a tribute to her, and I wanted liver cancer in the name so people knew what we did. My background is writing, marketing, and teaching. I felt like something was missing from a branding perspective, so I sent an email out to all of my friends who were like her aunts and uncles. None of them had had children yet, but they were around.

I asked them, “What’s missing?” Every person came back with some version of Blue Faery, because blue was her favorite color. I wouldn’t let her dye her hair until she was fourteen, and then she dyed it blue, red, purple, and then blue again. When she went into the hospital, she had blue hair that was fading. It was like teal at that point. She loved fairies. In the summer, when she was sick, she bought this pair of blue butterfly wings. We called her our blue fairy. She was buried in those blue butterfly wings. She bought a blue wig to maintain her look, as she said. That’s how the name came about. 

It looks like the old English or the British spelling of fairy.

We do. That was the spelling she preferred. 

Blue Faery’s Mission: Preventing and Treating Liver Cancer

I like it. That’s beautiful. In your work as an advocate, what do you do? What is your purpose or your goal in giving people support around cancer, specifically liver cancer?

I run the organization. Counting myself, I have a team of six full-time employees. I wear a lot of hats, but thankfully, I’m getting a lot of stuff off my plate as well. My overall goal is to see a cure for liver cancer in my lifetime. In the meantime, I want people who are diagnosed with liver cancer to understand what all their options are, make the choices they want to make, and make sure they’re seen by someone who’s a specialist.

That was a challenge we faced. The very first oncologist was a pediatric oncologist, and my sister did not have a pediatric type of liver cancer. She had the most common type there is. We got a second opinion. It took forever, but we finally transferred her care to UCLA with a doctor who saw her cancer every single day. He was a specialist in that cancer.

More than anything, I want patients and their families to have a good quality of life and to know what that means. That’s what I’m most proud of. I’m proud of patients and families coming to our community or our events and learning, ideally, how to prevent liver cancer. While it’s one of the deadliest, it’s also one of the most preventable. If they already have liver cancer, to fully understand what all of their options may be.

Liver Cancer Prevention: Key Insights and Lifestyle Choices

I’m learning. I didn’t know that about liver cancer. What are some key elements to liver cancer prevention? I didn’t know it was one of the most preventable cancers. Please share.

Liver cancer primarily has 3 buckets or 3 causes, if you will. The first one is viral hepatitis. Chronic hepatitis B, which is transferred through skin contact and bodily fluids, and hepatitis C, which is only transferred from one person to another through blood, are the underlying causes. Not everyone who has chronic hepatitis B or hepatitis C will get liver cancer, but they are at extreme risk for it.

If you know you have either one of those, then you should be under what they call surveillance for the rest of your life. You can prevent it. You can catch it early. It depends on what part of the world we’re in, but for example, hepatitis C is more common in Western countries. It used to be the most common cause of liver cancer in the US, whereas hepatitis B is more common in Asian countries and Sub-Saharan Africa because they don’t have access to the hepatitis B vaccine, which we do. That’s viral hepatitis.

Then, there’s environmental, which they don’t fully understand, but they know some things are linked to liver cancer. There’s a fungus called aflatoxin, which is common in foods in parts of Asia, but not here. They know that there’s some kind of link, but they don’t know exactly what it is. The third bucket is lifestyle. Our liver is our detoxifier. Please don’t ever order a liver detox on Amazon because that’s your liver’s job. That’s what it does.

This is where we’re seeing the biggest challenge. It used to be that hepatitis C was the most common cause. Now, it is obesity. It’s fatty liver disease. Not everybody with fatty liver is going to get liver cancer, but you’re at extreme risk for liver cancer if you have fatty liver disease. There’s a lot that’s not understood about fatty liver. Not everyone who is obese, for example, has fatty liver disease, and not everybody who has fatty liver disease is obese.

There’s a metabolic component that they’re studying to try to better understand. Those are the three main buckets. They’re viral hepatitis, environmental factors, and lifestyle choices. Alcohol is the one I think most people know. At least when my sister was diagnosed, that was the only thing I knew. Drinking excessive alcohol can lead to liver cancer.

I’ll use this as an opportunity to remind the readers. Research tells us that no alcohol is the best amount of alcohol. The old stats about a few drinks a day are good, but that was funded by companies that had a lot to gain from that research coming out in that way. We now have research that reminds us that no alcohol is the best amount of alcohol. So, yeah. 

Coffee, though, is very good for your liver.

That’s good news. 

Isn’t that fun? Even decaf. Coffee is very good for your liver. 

The Perfect Storm: Hepatitis and Liver Cancer Diagnosis

I wonder if lattes fall in that basket. I’ll have to think about it. I have a question for you. Feel free to say you don’t want to answer it. You mentioned that your mom used drugs. Was that part of what led to your sister getting liver cancer? 

Yeah. They were stunned when they saw what they did in her biopsy. They came out when Adrienne was still in recovery and not awake yet. They said to me, “Why do you have custody of your sister? Tell us about your mom.” I was like, “Okay.” I hadn’t even brought in the guardianship papers yet. Things were moving so fast. I told them, and they said, “That makes more sense. Did you know your sister has chronic Hepatitis B and hepatitis C?” I was like, “No.” I only knew what hepatitis A was. Hepatitis A is transmitted through contaminated food and water. It does not lead to liver cancer. You just feel sick for usually a month. You feel bad.

I got Gray’s Anatomy and a medical dictionary. I immediately started looking things up. I started with hepatitis B and C, and I was like, “What is this?” The year my sister was born was 1986. They did not test mothers prenatally. It was not standard care to test mothers prenatally for hepatitis B. Hepatitis C had not even been identified or taken out of the blood supply yet. Due to the timing of my sister’s and our mother’s backgrounds, they concluded that she got hepatitis B and C from our mother during childbirth, which is called vertical transmission. It was the perfect storm.

The challenge with hepatitis B and C, even though it’s a very simple blood test to find out if you have it, you won’t know until your liver starts to run down, become cirrhotic, and/or turn into liver cancer. My sister had no signs except for her right shoulder pain two weeks before she was diagnosed, which is a sign of advanced liver cancer.

I don’t want to scare everybody. It’s a very specific type of pain. There’s a nerve that runs from our liver all the way up to our right shoulder. She had some acid reflux, and that was it, which is a common sign of any kind of GI cancer. She was a teenager. I couldn’t control what she ate outside of our home. I was like, “Stop eating tacos at school.” She didn’t have any symptoms until it was too late.

What were the first symptoms, other than the GI, the acid reflux, and the shoulder pain? What led you to take her to the doctor’s office? 

I came home from work. I was teaching. I came home on a Wednesday. Usually, she would be sitting in our kitchen, doing her homework, which is another rule in our house. She went to high school from 7:00 to 2:00, and I typically taught from 8:00 to 3:00. I walk in, and I’m looking for her. Instead of at the kitchen table, she’s lying on the living room floor, curled up in a fetal position. She was saying she couldn’t breathe and was clutching her right side, exactly where her liver is. Mind you, the day before, she was 100% fine. The only thing was the shoulder pain.

We went to her pediatrician. He thought we were back because of the shoulder pain. It’s not his fault he misdiagnosed it, but he did. Her abdomen was distended. He said, “How long have you been swollen?” She said, “A couple of days.” I felt guilty, but I didn’t know because I was a very fortunate parent. She didn’t wear skimpy things, as all of her friends did.

I never had to worry about issues with school and clothes because she didn’t dress like that. She hadn’t told me that her stomach had been swollen for a couple of days, but it was. He sent us to the ER, and it was the ER doctor who told us that she had tumors in her liver and lungs. We were then immediately transported to the Children’s Hospital Los Angeles by ambulance because it had already metastasized.

I’m sorry for that journey. I’m sorry for her. I’m sorry for you.

Thank you.

Supporting Caregivers: Finding Strength and Managing Overwhelm

I’m speechless. I am so sorry. I can’t even imagine seeing your child on the floor in pain. Let’s shift for a moment, please. Can you talk to our reader, the one who wrote in, who’s feeling this sense? It sounds like you were working and teaching full-time, and in the blink of an eye, you’ve become a caregiver of somebody with Stage 4 liver cancer. How did you manage all of that?

I would love to speak to the reader, specifically. My situation was very different because I was the parent of a minor child. I got to make all the decisions, which is not entirely true because Adrienne made a lot of decisions, including refusing a chemotherapy drug after it caused some hearing loss. It was a very different dynamic. If I remember correctly, the reader was saying that this is her mother, and she was an only child.

The father was not in the picture. It sounded like she was trying to balance work, mom, and trying to stick it out.

You have to find support. That’s the key to any type of resilience. You have to seek support. Even if she’s an only child, you’ve got to find some outside support. It can’t be your mother. It has to be someone else. It can be friends. It could be family. It can be professional support. My sister had been seeing a therapist for two years, and we didn’t stop that.

The only difference was that her therapist either came to the hospital or came to our house. That was something my sister needed. That was the support that she wanted to continue. I probably did not seek enough support. I asked, but nothing existed for parents at that time. Nothing was around, even at the Children’s Hospital. I’m like, “Where’s the support group for parents? We’re all here.” There wasn’t anything like that.

It’s unbelievable that there was no support.

The other thing I would recommend, because this gets underutilized with adult cancer patients, is to talk to your mother’s social worker and ask about other types of support services. For example, if your child has cancer, you automatically have a social worker involved. That’s an automatic thing at any decent-sized cancer center. With adults, there are social workers available, but often, that information isn’t shared with the patients and their families. It’s strange.

I would ask about other support services. For example, my sister’s best friend’s mother did this research and said, “You qualify for this program.” I ended up quitting my job to take care of my sister full-time. It was a state-run program. We did qualify. We ended up getting some more financial support from the state, since I was her primary caregiver and she had cancer. There’s that type of support as well.

It is important to take care of yourself, and I didn’t do a good job of that. I also like that your reader talked about anger. Anger is not a bad emotion. I didn’t feel angry for so long. I don’t think I was suppressing it. I just didn’t feel it. Anger is healthy. Anger means you’re not in denial. Anger means you’re in the present and in the moment. You have every right to be angry.

Thank you for bringing that up. Often, we hear about the negative emotions and the positive emotions. I probably used those terms at some point and have learned over time that all the emotions are good. They’re all healthy. It’s how we use them that can make a difference between healthy and unhealthy. When anger comes up, it’s a messenger. It’s telling us.

It’s like when you were talking earlier about watching that show, and all of a sudden, anger came up. It knew. I don’t know if this is what came up for you, but I was imagining seeing all of these steps in life that your sister missed. There were all of these steps and dreams that were missed that didn’t come to fruition. It’s interesting how the reader didn’t use the word sadness. Sometimes, sadness can’t seep in yet when you’re trying to manage too much.

I lived in a very healthy state of denial because that was the only way I could get through it. I could not imagine a world without my sister. I could not imagine that kind of loss because I’ve never ever loved anyone the way I loved her and still love her so deeply and so unconditionally. I’ve never loved like that. I couldn’t imagine it.

I will say 2 things or 2 sides of a coin. Don’t grieve while the person’s still alive. I’ve heard from patients how hard that is for them, where they feel like they’re already being treated as if they’re gone. It’s never intentional or rarely intentional, but don’t grieve the loss before the loss. At the same time, when the loss happens, don’t hold back on grief. Let it go. 

The first year after Adrienne died, I was trying so hard to be what everyone wanted me to be and to go back to being Andrea, and I was faking it. I was deeply depressed and suicidal, and no one knew. Only one person realized it and called me out on it, thankfully. I’m glad he did. I was trying so hard. Part of it was that I was like, “I am forever changed. Does that mean I’m now going to lose my friends?” I did.

A year after she died, when I fully embraced my grief and fully let it happen, which at that point had built up, I lost all the friends I had. It was not all at once, but over time. I lost all the friends I had because I’m never going to go back to the person I was before she died or before she was diagnosed. That’s not going to happen. I feel like core me is still here. You find out who your friends are. That’s the truth.

Life’s challenges do let us see who steps up and who fades away. No shame and no blame. It lets you see who’s in your court, especially when you’ve gotten to the point of being suicidal and only one person noticed. Thank goodness for that one person. They were able to recognize it and give you support. I’m guessing you got support from them.

In a rudimentary way, yes.

Rudimentary is better than nothing.

It’s what led me to founding Blue Faery because I realized I had to channel my grief. I had to find a way to turn it around. I wanted to volunteer for the largest liver disease organization in the US, but they wanted nothing to do with liver cancer. They had no interest in it. It wasn’t even on their website. They thought I wanted a job, but I made it clear, like, “I’m not asking for a job, but here’s my background. You’re missing liver cancer. Liver cancer is only going to get worse there.”

It has never declined. It has gotten worse worldwide since my sister died. I could see that trajectory. Nobody was doing anything in liver cancer. We’re still the only nonprofit that I know of that’s specifically focused on HCC. There are more liver cancer nonprofits that are focused either on other types of liver cancer or liver disease more broadly, but there wasn’t anyone doing anything in liver cancer.

The Power of Support: Community, Resources, and Asking for Help

Thank you so much for your hard work. I was listening to a segment where they were talking about how, for the first time in the world, there are more obese children than there are children who have malnutrition in the world. It tells us the piece you brought up, the connection between fatty liver to liver cancer. It’s something for all of us parents.

Isn’t that just devastating? That’s devastating.

It’s frightening, and it’s something we could do something about. We can eat clean. We can keep away from processed foods. We can exercise. We can move. That’s the part about the obesity connection. The other connection, like what your sister suffered from, is more nuanced, especially if you’re a kid living in a household where there’s drug use. Again, I’m sorry.

One more thing about this reader’s question, and you talking about the critical nature of getting support for her, I am also a firm believer in support groups. I know there are meetup groups out there, or sometimes a community health center. A local junior college or university might have some sort of support group.

I don’t know the age of her mother, but I know that for seniors in many communities, there are senior support services that can bring in meals. Sometimes, thinking outside the box is what we need to do. Yet, when you’re already overwhelmed, that sounds so easy. It’s like, “Let’s think outside the box and do some phone calls.” When you are already feeling depleted, those steps can be very hard to take. 

What I found helpful to do was when someone would step up and say, “Is there anything I can do?” People do genuinely want to help, but they’re not going to know what to do if you don’t tell them what to do. I had many people, but this one person in particular was not a close friend of mine. She had met Adrienne. We had done a play together. I was like, “There is something you can do.” I realized she lived right next to a store where Adrienne wanted something in Hollywood.

In LA, the traffic is no joke. I was going to do this errand myself, but it would mean leaving Adrienne alone, and it would take 25 minutes to get there. I was going to be gone for an hour and a half, easily. I rarely left her alone. I said, Yeah, Tess. There is something you can do. Would you mind going to this place, getting this stuff, and bringing it to our house?” She was like, No way. It’s fine.” She did it. It was just a one-off thing. You can make a list of what would be helpful, whether it’s groceries. I know one patient for whom a friend would always come get her car and put gas in it, so her car always had a full tank of gas. It can be little things like that that make all the difference in the world for the family.

Thank you for highlighting that. I can see it coming from both ends, for the person who’s in treatment and their family, if somebody says, “Can I support you?” I love your idea of having a list ready. It can be something as simple as, “It would be great to come home and have anything in the fridge. Anything to come home to would be much appreciated. Thank you.” It could be, “I haven’t had time to do this research on the upsides and downsides of this treatment that they’re proposing.” There are some people like me who love doing research. You could give it to someone. It is being okay with asking.

If you’re on the other end as a friend, family, or somebody who’s looking to do some good deeds in the world, or even if you know someone peripherally, it is showing up and saying, “I’m here. I have an extra three hours this week. Would you like me to cut the grass? Would you like me to tend to your flowers? Would you like me to pick up some books at the library? What would you like?”

When we do that, not only are we taking care of ourselves because it feels good to donate and do good things, but we’re also taking care of those people who are often desperately in need, and one foot in front of the other is all they can do. You are such a gift. I am so grateful for the work that you do. I’m so grateful for your passion, commitment, and the way you honor your sister every day through what you do. What a blessing it was for her to have you and you to have her. Thank you.

It definitely went both ways.

Identity Beyond Illness: Don’t Confuse Who You Are with What You Do

Do you have any other insights for our readers, or the question of the day, the person who wrote in? Any other thoughts? 

This was a piece of advice I got in college that, at the time, I didn’t appreciate. I think it can also really, really help families and patients. Don’t confuse who you are with what you do because what you do can change. You might be somebody fighting cancer. It’s okay to not identify as a cancer patient and say, “I’m someone who’s fighting cancer right now. This is something I’m doing. It’s not who I am. It’s not the whole of my existence.”

I think that is where doctors struggle at times because they don’t often see the person. They see the patient. I love the people who stand up to them and say, “I’m a person living with cancer, but that is not all of me. I am all these other things. This is who I am. That’s just one thing.” Don’t confuse who you are with what you do. 

Thank you for saying that. As you were speaking, I could feel anger coming up in me. I listened to my anger. I was having a conversation with someone, and they were saying how there are certain parts of the medical community where they don’t even call the patients ‘patients’ anymore. They call them cases. This is my personal and professional opinion. If somebody is that removed from the human being that they are entrusted to care for and all they see is a case, they should not be in a position of caring for the human being behind that patient. It’s part and parcel of being a caregiver.

The medical community, like I am, is entrusted with being a caregiver. We need to take that seriously because the person on the other end of that situation is often in great pain, confusion, and all of those things. Thank you for saying something that brought up my anger. I like listening to it. Thank you so much for your expertise and for sharing your story, your wisdom, and all about your gorgeous nonprofit that is doing so much good in spreading awareness and wisdom about liver cancer. Again, I’m sorry for your loss. I am grateful that you allow your sister to live on through Blue Faery. It’s so beautiful. Where can our readers find more about you, your book, and your nonprofit?

You can find me at AndreaWilsonWoods.com. As far as social media, I’m most active on LinkedIn. Blue Faery is at BlueFaery.org. My book is at BetterOffBald.com. It is available wherever you get books. It is also available if you have Amazon and Kindle Unlimited. 

Thank you again so much for sharing your love, your wisdom, everything. It’s been a true pleasure and an honor. Thank you. 

Thank you for having me. 

Thank you to our readers for sharing in this very poignant journey with us. I hope you have some really good takeaways for self-care and care for others in your life. Thank you again.

Important Links

• Andrea Wilson Woods
• Blue Faery: The Adrienne Wilson Liver Cancer Association
• Better Off Bald: A Life in 147 Days
• Gray’s Anatomy
• Better Off Bald: Episode 1 — Before Adrienne
• Andrea Wilson Woods on Facebook
• How Euphemisms Help Us Deal With Death
• NAMI HelpLine
• Mental Health and Relationships – My Healthfinder
• PTSD Hotline
• 988 Suicide & Crisis Lifeline
• Alcoholics Anonymous
• Al-Anon Family Groups
• Narcotics Anonymous

About Andrea Wilson Woods

ANDREA WILSON WOODS is a keynote speaker, a writer who loves to tell stories, and a patient advocate who founded the nonprofit Blue Faery: The Adrienne Wilson Liver Cancer Association. For over ten years, Andrea worked in the education field as a teacher and professor for public and private schools as well as universities. Andrea obtained her master’s degree in professional writing from the University of Southern California; her nonfiction writing has won national awards. Her best-selling and award-winning book, Better Off Bald: A Life in 147 Days, is a medical memoir about raising and losing her sister to liver cancer.