Finding My Purpose After a Rare Brain Tumor | Cancer Friends

Featuring Matthew Zachary

Hosted by Andrew and Esther Schorr, “Cancer Friends” highlights stories and lessons from cancer survivors and their support system. Find other “Cancer Friends” episodes on our video channel here!

The segment features Matthew, who was a 21-year-old college student and pianist when he started losing fine motor skills in his left hand. As his symptoms progressed, doctors discovered the reason why: an extremely rare brain tumor.

Matthew discusses the founding and growth of Stupid Cancer, a nonprofit that focuses on adolescent and young adult (AYA) cancer research and resources.

He also shares his experience of being a self-proclaimed provocateur in the cancer world, turning anger into action, and looking toward the future of preventing cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

We deserve better. We want to live a little more. And why should we be treated differently?

Matthew Zachary

Introduction to Matthew

Andrew Schorr, The Patient Story: Hello, it’s Andrew Schorr and Esther Schorr again, back with “Cancer Friends,” our series. We want to introduce you to someone who’s been a friend in Cancer Land for a long time, Matthew Zachary, who joins us from New York City. Hi, Matthew.

Matthew Zachary: Hello. How are you?

Esther Schorr, The Patient Story: Great to see you.

Andrew, TPS: We’re doing good. Matthew, at age 21, [was] a college student in upstate New York, and really working full time as a music student on the piano. [He] had a problem he’ll describe that ended up being a brain tumor. 

It ended up transforming him in really helping thousands and thousands of people who have been or are even now young adults with cancer. We want to take you through what happened with Matthew and how it’s made a difference to so many people and what you do today. 

1st symptoms

Andrew, TPS: So, Matthew, let’s go back to when you were 21. What happened?

Matthew: Well, let’s go for the history lesson, shall we? This is an exercise in anthropology. I was classically trained from the age of 11. So 10 years later, I’m a college senior composing for film, television, orchestra, jazz band, whatever it was. I wanted to go to grad school. 

I wanted to be a film composer, and that was the plan, the job, the goal. Rarely does someone that young know what they want to be for the rest of their life, but that was kind of my fortune at the time. 

During summer break, everything was fine. [I] got back to school, and I immediately noticed — maybe this is just unique to being a pianist — that the fine motor coordination of my left hand wasn’t as great as I remember it to be. 

I couldn’t run my fingers up the keyboard as quickly as I remember, and yet my right hand was perfectly fine the way I remember. You’re young, dumb, stupid, 21. I’m like, “Oh, that’s weird. Whatever,” and that was kind of what happened. 

Over the course of the fall semester at Binghamton, it worsened to the point where — I’m a lefty — I couldn’t grip a pen and write. I could barely type with my left hand, like touch type. I was just poking like we do these days. I’m like, “Oh, that’s still weird.”

Seeing campus doctors

Matthew: I kept going to the doctors on campus, and they’re like, “Eh, you have carpal tunnel. Put your backpack on your other shoulder,” or, “Hmm, you might have early-onset multiple sclerosis,” or “Hmm, this could be, I don’t know, Epstein-Barr syndrome.” So this crazy litany of nonsense. 

It’s hard to blame them. You don’t think brain cancer. 21-year-old, pianist, left hand doesn’t work. Ultimately, then the headaches showed up, and then they started taking me seriously. That’s really where the shit hit the fan right after Thanksgiving. That’s how I went from, “I’m great,” to, “What the hell is happening?”

»MORE: Patients share how they processed a cancer diagnosis

Surgery to remove to brain tumor

Andrew, TPS: That turned out to be, in fact, a brain tumor. I know there was confusion about what kind of tumor it was and even then what to do about it. Describe a little bit of that.

Matthew: I went to my general practitioner, my pediatrician. I was 21, but I still saw my pediatrician. I came back, and I said, “I can’t do this [or] this.” 

He’s like, “All right, this is a problem. Go get an MRI.” Got the MRI, and then I went to the diner for lunch afterwards, got back, and there was a beeping answering machine — if you want to Google what that was, kids. 

It said, “Get back here. There’s something wrong with you.” So then I went to a neurologist, who thought I had this and this and this, and then he said, “No, you need to see a neurosurgeon.” 

The neurosurgeon said, “Oh, this is probably an astrocytoma,” which is not great. It’s maybe the least worst of them. But then they finally went in there, and they took it out. On January 10, ’96, was my eight-hour surgery.

Esther, TPS: This is brain surgery.

Matthew: A big, big, gigantic old-school craniotomy, tear your head open kind of stuff, like Russian gulag brain surgery stuff. It wasn’t pretty, and you’re awake the whole time. You’re kind of pseudo awake and not awake, but it’s just not fun. It’s a little better these days. 

An extremely rare type of tumor

Matthew: They took it out, the pathology came back, and I’m like, “It can’t possibly be this.” It wasn’t an astrocytoma. It was a medulloblastoma, which is unseen in people that were 21. It’s like an eight-year-old and younger [patient]. Congenital. You’re born with it. It’s called a primary neuroendocrine tumor, PNT. 

They’re like, “How the hell does this 21-year-old kid have a medulloblastoma?” They didn’t believe it. I was very lucky to have my dad’s best friend, my Uncle Jay, who I talk about a lot in all my talks. [He] happened to be one of the world’s leading genomicists at the time. 

He said, “Give me some chunks of this tumor. I’m going to ship them out around the world to confirm that this is what it is. And if it is, it’s impossible.” Turns out it was a version of what they thought it was. A medullo-mutant-blastoma, so to speak, that was nowhere in the history of recorded biology in brain tumors, so malignant nonetheless.

Esther, TPS: The rarest of the rare.

Matthew: Like there’s 200 medullos a year anyway, and I had the one in the whole world. I don’t know if it’s to date or not 27 years later, but that was the confusion that led to this, which added just more hedge-maze thinking on what to do with me because it was finally out of my head, but now what?

Undergoing radiation treatment

Andrew, TPS: The “what” became more than 30 radiation treatments.

Matthew: We’ve been working in this industry for a very long time, so it’s easy to lose sight of what it’s like to just be walking in the door for the first time. My dad was 46. I’m 48 now, so I can’t even comprehend what it’s like to have a 21-year-old son who might be dead in six months. 

[We thought] who do we talk to that even understands what this is? We landed on Dr. Jeffrey Allen, who is one of the leading pediatric neuro-oncologists in the world, at NYU. 

He did his best to come up with the calculus of what might work, but they convened a tumor board to really figure out what should we do with Matt?

Normally, a tumor board is comprised of leading collaborative medical professionals that kind of drop their egos at the door and decide what’s best for the patient and come back with recommendations. 

That’s what’s called a tumor board. What does my tumor board do? “We got no idea. Good luck. Go forth. Go do.” We settled — and I say settle because what did we know we were doing; we’re rolling the dice on these things — with 33 cranio-spinal treatments of, I don’t know, Chernobyl radiation, basically, down to my sacrum. 

Then they had this thing I think we take for granted today, which is a good problem to have. Today, it’s like a proton beam therapy or toma therapy, but 27 years ago it was called stereotactic radiosurgery. 

There was this 3D thing they were just inventing where they could target only where the tumor is and no surrounding tissue. That’s how it works today. You’re welcome, kids, that I was your guinea pig. That’s what we settled on: 33 of those from February 15th to March 30th with the weekends off.

»MORE: Read more about radiation treatment

Side effects of radiation

Andrew, TPS: How’d you do with that? How debilitating was it?

Matthew: It nearly killed me. But also, this was 1996, and there were no antiemetics, and there were no quality-of-life medications. You’re just burned and in pain, and you can’t eat. [You’re] throwing up 50 times a day.

Esther, TPS: And you’re young. 

Matthew: My immune system was there, but if I were maybe 80 or 90, I probably wouldn’t have done so well. I had an incalculable number of side effects that all kind of came in waves and lasted to this day, 27 years later. No one’s out of the woods. The gift that keeps on giving. 

I like to say that I lost my life, but I didn’t die.

But it was tragic. I kind of tell the story like it’s someone else’s story. It’s so far away from me, but I was treated like a piece of meat. I wasn’t a human. I was just like a lab rat being experimented on. That’s how I felt.

Feeling like the only young adult with cancer

Andrew, TPS: Something happened as you recovered from that. You go to a cancer clinic, and most of the people there have gray hair like me. Hardly anybody is your age. Something happened to you to say, “I want to do something about this.”

Matthew: I have the worst of both worlds. When I was going to any support groups or any conferences, it was all geriatrics. When I was seeing my doctor and at the hospital, getting radiation, [it] was all pediatrics. 

There was no one on any spectrum that was remotely my age, so I couldn’t relate to anyone or anything. I didn’t realize that it was possible there could be someone like me to look for, so I never just asked, “Where are the people that are like me?” I never asked that question because it didn’t even occur to me it was possible to ask that question.

Stupid Cancer

Esther, TPS: How did you get from there to what we already know happened, which is … you created a community of people like yourself.

Matthew: I feel like I’m a bit of a Forrest Gump. I just happened to bump into people along the way who happen to be these people, you included. I just found myself in the right place at the right time too many times. 

Then I wound up being able to rehabilitate myself and play piano again, but I didn’t get to go to grad school. I took a full-time job working in the agency world. Ironically, the healthcare agency, unbeknownst to me. I was working where I wound up being. 

I just started finally reclaiming the fact that I could compose and perform again. But I would probably never be a film composer. I was too sick. It took me years to even just be able to eat any food I wanted. I like to say that I lost my life, but I didn’t die, thanks to radiation. 

I declined chemo. That’s a whole other story. Turning down chemo in the ‘90s was like anathema, how dare you? But the whole point was, I was so focused on what was important to me, and my parents supported that. 

Along the way, I happened to get in touch with someone at my office who was doing a Relay for Life. Like, what the hell is that? All right, I’ll go to this thing. Of course, everyone’s my age, but they’re raising money. They’re not the patients there. 

What wound up really happening that transformed all of this — if I had to euphemistically trace the cord back to the outlet. I decided to write some music, to go into a studio, and record like 50 songs that I had written between ’94 and ’98. Before, during, and after cancer. 

I went out west. My friend had a studio. I tracked 51 songs in two days. He produced these CD’s for me. Back then you could self-produce them, make your own artwork. They’ll burn them for you. You pick them up in packs of 50. They’re pre-plastic-ed. Everything’s there. 

I just did that. As a lark, but I did it, in a way so I could give them to my doctors to thank them. But one of the doctors I gave it to, there was a sales rep from some company [who] showed up there.

The story goes: “Oh, what’s that?”

“That’s Matt, one of our patients. He was a teen adult” — whatever they called me back then — “pianist who was a brain cancer [patient] but plays again now.” “I’ll take this back. I’ll see what they can do.” 

That got me some strange video news release, I think for Roche at the time. I didn’t know what I was doing. I had a story. It was just me. A gentleman saw that piece and found me on a Columbia listserv for brain tumors that I happened to find. 

If there was any one person on this earth I could have met who would have been the default supernova to accelerate me into this rabbit hole, it was Craig Lustig. I went from not even knowing there was someone like me to meeting my doppelganger: a bald, Jewish, New York City-based, 20-something brain tumor survivor who went to Binghamton and was in my a cappella group.

»MORE: Patients describe dealing with hair loss during cancer treatment

Again, this was like 2000, ’01, ’02. And then the rest is history. Craig took me down this rabbit hole. He said, “You should be a cancer advocate.” To which I responded, “The hell is a cancer advocate?” And there we go.

Growth of Stupid Cancer

Andrew, TPS: [What happened] was a regular internet radio show, really attracting other young people around the world probably, and forming an organization eventually like a convention, if you want to call that, of people like that in Las Vegas. It mushroomed. Just describe that. It took off.

Esther, TPS: Also, talk about the confluence of timing here because now the internet’s around, right?

Matthew: I leaned on my advertising industry background [and] my creative background. I’m a brand guy. I like to build brands [because] I understand how to communicate with customers and consumers. Also, I understand how to get you to buy stuff and what logos look like and all the nerdy stuff that happens in the agencies. I had that skill. 

What I realized out of the depths of the alliance was there really were no agency creatives in that space. I didn’t really want to do policy work. I wasn’t an academic.

You can be angry about why this happened to you, but don’t ask why.
Ask, now that it has happened to you, what can you do … to make it less horrible for the next person that shows up. 

I didn’t really want to start a charity; I just wanted to figure out where I belong. The trigger to start Stupid Cancer was I finally found people like me.

That was the spark that got the organization started. It had to be a charity. I didn’t know anything else about it. But you’re right. I did it on purpose. It was intentional. It was meant to — back at the time, shock value wasn’t a thing before the internet because you didn’t know it existed. 

I had a talk radio show. We did live events. We had bar nights outside the hospital in 50 cities around the country. I think it just spoke to people in a way, because it gave them permission to be pissed. [It was] a community of people that understood what they’re going through, and a way to get behind something they didn’t know they needed to do.

Necessity of a provocateur in cancer advocacy

Andrew, TPS: Matthew, you’ve remained what you just labeled a provocateur. Why is that needed in this field? You take joy in doing it. It’s needed. How come?

Matthew: I’m not alone. There’s only a handful of people like me who are willing to.

Someone’s got to poke the stick. Someone’s got to poke the bear. Someone has to be willing to call out bullshit where bullshit is due to be called out without throwing too many people under the bus at the same time. 

I’m an entertainer. If you ask me who I am, I’m an entertainer. All I want to do is get on stage, play piano, and talk to people. That’s the core of who I am. 

But I take that entertainment and I am able to bring into what I want to talk about, the inanities, in a way that normal people understand. 

That isn’t multi-syllable jargony, jargony fridge-magnet bingo, because that’s the way healthcare works, and we don’t speak human. 

If someone doesn’t speak up on behalf of the little man or garner the respect of the American voters or give consumers and patients and caregivers a way to mess back against the system built by design to not help them. You can’t do that in a flaccid, placid demeanor.

Turning anger into action

Esther, TPS: Really, it rings very true that sometimes you have to just get angry enough to take action. What it sounds like to me was there’s anger and grief initially about being alone. Who is everybody? Where are the people that are like me? 

And then once you started finding people like you, there is the motivation to do something about it, to bring them together, [and] to take action. And that seems like what you’ve done in a lot of the things that you’ve pursued.

Matthew: A good example of what I did in 2007, the language coming out of the NCI, the NIH, the CDC, COG — all these acronyms that we can Google — was that something like survival health outcomes in adolescents [and] young adults were not increasing at par with longitudinal data against pediatric and older adults.

What that meant was, if you’re Gen Xer, you’re going to die way more than if you’re not. And I could say it that way, and people understood it when I said it that way, and that no one cares about young adult cancer except young adults with cancer. I was able to just make it that straightforward. 

Now we look at what ACA accomplished with all of its flaws. That was meritable from the young adult cancer movement. The long-term ped movement. ACA, the pre-existing condition, up to 26. Those two things were driven by people like me and hundreds of thousands of us that rallied around one idea. 

We deserve better. We want to live a little more. And why should we be treated differently? Why should we be cared for differently? Why should there not be standards and protocols for our age relevancy, just like everyone else? If you don’t give people a channel for that anger, you’re just going to stay angry.

Shift in research for young adults

Esther, TPS: I have one other question. From a practical standpoint, Matt, have you seen over these years of raising hell that the protocols have changed, that there’s research that’s focused on this sort of middle between pediatric and older? Have you seen that shift?

Matthew: I wanted to see if, what is it, 12 years later, we’d done anything that they wanted us to do. And we did all of it. 

It’s because we forced policies, we forced standards of care, we forced young adult cancer, age-appropriate relevancies, we forced fertility mandates, [and] we forced the ACA. 

Survival rates are higher proportionately to which cancers have better treatments these days, which is another conversation. Back then there were three things. Now there’s 40,000 things.

It’s less about how old you are and more what’s wrong with your genetics, which is even better because it’s not age. It’s not a derivative of how old you are. 

The answer is yes, I think we did a good job.

Not knowing what information to look for

Andrew, TPS: As we have young adults or their parents as well who may be watching, what would you say to them as individuals for their kind of operating system as they go through this today?

Matthew: Well, if you’re already watching this, you know it exists. The challenge, of course, is how do you know it exists in the first place? Because healthcare is — I’ve always said it’s like a supply-only store you don’t want to shop in.

You don’t think to know things, like I didn’t know there was someone else that was 22 with cancer. I had no idea.

Today, it’s probably a little easier to find those people. You search on different platforms, and thankfully, that’s maybe a good part of what social media can do to connect you with people. 

Self-advocacy

Matthew: I’m a cynic because it’s so easy to just say, “Be your own advocate.” Not everyone’s born with what I call congenital chutzpah. You don’t have that inside you. Where does the gumption come from? It might be through anger. It might be through just a disenchantment or disenfranchisement.

But most people don’t think to ask for a second opinion because … you’re scared. You don’t want to be there. You’re terrified. “Help me out. I just want to live,” is often what happens right now. 

I’d like to think there’s a little more pushback from younger generations who are now more aware of the subtle nuances way beyond the biology. What’s wrong with them? 

»MORE: How to be a self-advocate as a patient

Advice for parents navigating their child’s diagnosis

Andrew, TPS: What would you say to parents of young adults or how the young adult and the parent navigate this together in a positive way?

Matthew: Honestly, voice memo app on your phone is your best friend. Record everything because you can and your kid can’t. That’s a great life hack. 

Back then, my dad would scribble down on paper and translate to Word document on our Macintosh, the little gray one you toted around. Keep track of everything; record everything. 

Just a life hack: there’s a website called rev.com. It transcribes your voice memos to text. You can just record every conversation you’re ever in. You can take notes to yourself on your phone and just send those audio files. It’s like $0.99 every time you do it. 

We didn’t have that back then, but here’s a life hack for caregivers who may have more latitude to listen and record than their scared children, who want to get stuff done. 

That’s my biggest recommendation to caregivers: take advantage of what I didn’t have 27 years ago, because your strongest tool is knowledge, and you don’t know what’s happening when you’re all Charlie Brown teacher, listening to your care team saying X, Y, and Z.

Andrew, TPS: Thank you so much. Andrew and Esther with Cancer Friends. One of our dear cancer friends, Matthew Zachary. Thank you for [reading].

Matthew: Thank you, everyone.

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Featuring Annette La Fontaine

Hosted by Andrew and Esther Schorr, “Cancer Friends” highlights stories and lessons from cancer survivors and their support system. For more “Cancer Friends” episodes, you can find them on our video channel here!

This segment focuses on Annette La Fontaine, who was diagnosed with breast cancer in 2021. A series of events left her feeling broken and unlovable. However, support from Annette’s children and friends helped her through treatment and a bilateral mastectomy.

Annette shares how stress may have contributed to her health problems, how she was a part of her treatment decisions, and how she moved from feeling unlovable to feeling like the universe has unloaded love on her.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

During that dark time, that initial time, I could not have even foreseen how I am now. I’m happy. I’m super comfortable in my body. I’ve actually come to love this body again. 

Annette La Fontaine

Introduction to Annette

Andrew, The Patient Story: Hello, it’s Andrew Schorr in San Diego with my wife.

Esther, The Patient Story: Esther Schorr.

Andrew, TPS: This is another episode of our regular program, Cancer Friends. Thank you for joining us. Here is a friend, and that is Annette La Fontaine, who joins us from nearby in Leucadia, California, part of San Diego County. The reason we know her is because now she’s our massage therapist.

Esther, TPS: Oh, my God, we love Annette.

Andrew, TPS: We’ve begun to learn Annette’s story and we wanted to share it with you. Annette, thanks for being with us.

Annette: Yes, my pleasure. Thank you for having me today.

Stressors in life

Andrew, TPS: I’ll just give a little background. Annette has had some real stresses in her life. She had a marriage to a man who [Annette describes] as difficult, with bipolar disease [and] some drug issues. Eventually you separated.

Then with 3 children, 2 of them became quite ill. Your daughter developed Hodgkin lymphoma as a teenager. While she’s fine now, that was a big stressor.

Annette: Huge stressor.

Andrew, TPS: I can’t even imagine a child with cancer. Your athletic son, 1 of your 2, became really debilitated, and [it] turned out to be Crohn’s disease with a bleeding disorder. Bad news, right?

Annette: Difficult combo.

Andrew, TPS: How stressful was your life? You eventually became a breast cancer patient. We’re going to talk about that. Would you say that stress was really, really deep for you?

Annette: My integrative doctor says to me that cortisol is my worst enemy. I bathed in cortisol for probably close to a decade. Life brought me many hardships and challenges. We all survived it. We all got through it, but I think it takes a toll on you. 

I don’t know if it’s causational, but I think it’s definitely part of my journey that allowed this to erupt in my life. [2020] was a very stressful year. Then in 2021, I was diagnosed and I think my body just gave up the ghost. It was a lot.

Esther, TPS: Just for folks who may not know, when you refer to cortisol, that is the process or the chemistry that happens when somebody is under extreme stress. I know from reading, there is a medical physiological connection between high stress, releasing cortisol and what happens. 

Annette: It changes our physiology. It has a real effect on us. Measurable effects.

Being diagnosed with cancer

Esther, TPS: What happened?

Annette: I found a lump. I can’t even say I was doing a self-exam. I was just showering. I had a very lean body mass and it was very evident. Suddenly, overnight, there was a lump. It was in my breast, and that’s not a good place to find a lump. 

I panicked a little bit. I was getting ready to go out on a dinner date. I called my girlfriend, and I said, “Should I stay home and freak out, or should I go on this date?” She said, “Well, if you have cancer, you might as well go out and enjoy your life. Go to dinner.”

It turned out I did have cancer. 

Andrew, TPS: What type of breast cancer did you find out you had?

Annette: I had ductal breast cancer. I was estrogen/progesterone positive, HER2 negative and that’s the thing that you want to have come back.

Deciding next steps

Andrew, TPS: You talk to the breast cancer doctors. The doctors are saying, “What do you want to do?”

Annette: Yeah, and I said, “I don’t want to have cancer. That’s my choice.” They were like, “Okay, how do you want to get there?” I was through Scripps [MD Anderson Cancer Center], and they came to me as a team. They said, “We’re going to get you through this. We’re very good at what we do.” 

They assign you a navigator. I’d never heard of it, but a navigator is somebody who helps you navigate this process, because you are deer in the headlights. You don’t know what’s going on. It’s a lot of details. It’s a lot of coordinating. They help you get through this process. 

They approached me that they were very good at what they did. That gave me confidence to hear them state that out loud. This person was my go-to person for all of my questions, and I had a lot of them. I was very thankful for her and she was very responsive.

On the other side of it, I wasn’t completely happy with all of my care. There were some things that didn’t go well, but throughout all of that process, I was able to communicate with my doctors and get through all of the issues that did arise. I feel like I had good care, and in the end I decided I wouldn’t have time [for a second opinion]. 

During my diagnosis, I found out I was going to be a grandmother. I just was like, “I’m going to just go big. I’m just going to do bilateral. I have had my kids. I’m post menopausal. I’m going to just do a bilateral because I think that gives me the best chance of survival.”

Andrew, TPS: I understand you put everything in a flowchart for you to try to get to a decision.

Annette: Yes, because I was shocked they wanted me to be participating in the decision for my treatment. I thought that was kind of funny. I don’t know. How do you know? How am I going to know? 

Yes, I made a flowchart. I just started doing research, talking to people, talking to doctors, [and] going online. I ultimately did make a flowchart. My flowchart started with, “Just ignore it and do nothing and hope for the best.” That didn’t have great outcomes. [It went] all the way to a radical bilateral mastectomy. I would be one step back from that. I had a skin-sparing bilateral mastectomy.

Andrew, TPS: And ultimately two reconstruction surgeries [and] an implant. 

Dealing with the emotions of a diagnosis

Andrew, TPS: Let’s talk about the emotional side. There had been a car accident. You had that, and you’re being wheeled in for surgery. What was going on in your head as far as your life and relationships?

Annette: I think at that stage, I was just overwhelmed. I was not keeping it together. I was crying all the time. I’m probably going to cry now. I was with a man in what I thought was a great relationship. [After] my diagnosis, he ended it because he had lost his first wife to triple-negative [breast cancer]. He watched her die a slow, horrific death, and he didn’t want to go through it again. 

We’d been in this car accident. I went to an orthopedic doctor, who said my cancer treatment took precedence over fixing the injury I sustained. [He] sent me off to do my cancer treatment. The first thing up was this bilateral mastectomy. 

I was physically broken, mentally, spiritually, heartbroken, all the ways a human could be broken. And COVID. Go to the hospital alone to have to subject my body to mutilation so that I could continue to try and live. 

It was dark and scary. I tried to pray and meditate, and none of my tools worked. For a period of time, I was just overwhelmed. I was not well. My heart rate was insanely high for probably 2 weeks, and it was just a hard time. I don’t know how I got through it.

»MORE: Patients share how they processed a cancer diagnosis

Support through the journey

Esther, TPS: How did you get through it?

Annette: My kids were near. My kids were very comforting. My kids had been through medical trauma themselves, so it was very interesting to hear them parent me back [and] to mirror my parenting back to me. 

They held me [and] told me, “It’s okay. We’ll get through it together. We got this. We do hard things together.” They kept me together. It was kind of a surreal experience to reflect back when I said things to them. To have them kind of bring that care to me was lovely. 

I have a great network of girlfriends that are like my sisters. They just started coming, and they brought food, pillows, coffee, prayer beads, and hugs. Sometimes I’d come home, and there would just be a little treat at my gates. Just sweetness.

Feeling unlovable

Andrew, TPS: Annette, I know as you were being wheeled in, you had this feeling, “Will anyone ever love me again in a relationship?” Because the man you had been involved with couldn’t handle it.

Annette: And you know what that made me feel? I had cancer, but I felt diseased. I felt like it was so gross, this man didn’t want to be with me. It pushed back my heart so hard. 

It wasn’t just that he broke up with me, which would have been sad. He broke up with me because I was defective in some way. Something was wrong with me, and I took that in deeply. That hurt. 

Then in that scenario, to go in and have my breast removed. One of the identifying features as a woman is being removed. I’m going to have scars. I wasn’t 100% [sure] at that time that I was going to rebuild. 

Who would love me? I didn’t know if I could love myself. Would I love me? Would I ever love my body again? I certainly didn’t think a man would ever love me again. I thought that was over.

How did you get to where you are now?

Esther, TPS: All very real, honest emotion. It’s completely understandable that you would feel that way. We now know you now. Where did you go from that Annette and that mindset to where you are now? How did you do that?

Annette: During that dark time, that initial time, I could not have even foreseen how I am now. I’m happy. I’m super comfortable in my body. I’ve actually come to love this body again. 

I have a man in my life that loves this body. He’s never known my body any other way. He thinks it’s great. To get from that point to this point was a lot of work. It was a lot of work. It just creates a lot of existential thought about who you are. Who am I? What does it mean to be me, to be a woman, or to be lovable? I had to do kind of a deep dive.

Andrew, TPS: I understand you see a therapist, who’s helped you dig into all the trauma you went through to kind of sit with it to get past it.

Annette: Yes. We’ve done a lot of work. Much laughter about it. Also many tears. I got through the initial medical stop [and was] moving forward. Eventually, I circled back to have this orthopedic work done that I had to postpone. In that work, I had to be in a couple of surgical procedures, and I lost it. I had a meltdown. 

It wasn’t because of what was happening. It was because it had triggered my surgical stuff for my cancer. In that moment, I kind of had this out-of-body experience, like, “Oh, I’m in a room full of doctors, and I am falling apart right now.”

In that moment, I was like, “I think maybe I need to get some help. I think that there’s more trauma in here that I need to work through.”

Finding love again

Andrew, TPS: You alluded to meeting someone.

Annette: Yes.

Andrew, TPS: Tell us about that and how you actually met someone.

Annette: I was at a gathering of women. We tend to gather on full moons because we live in North County, San Diego. Everybody was sort of passing around their phones. They’re all on a dating app called Bumble. 

I was pretty fresh off my third and final surgery, and I thought maybe later in the year, I maybe would start thinking about dating. But I downloaded the app. One of the women in the room grabbed my phone [and] just did my profile. 

I started swiping just out of curiosity, and there was a gentleman who just caught my eye. He was very dapper. We messaged a little bit, and that evolved into a first date. On that first date, we were really hitting it off. We just had a lovely conversation. I love his energy and demeanor. 

I got it in my head, like, “Should I tell him I have cancer?” This was a big thing in my life, and here I am on a date, having not thought this through. I just blurted it out to him in our conversation. I said, “Here’s this journey I was on recently,” and he listened. He made eye contact, he was kind, and he asked a couple of questions. He was so sweet.

At the end of my story, he kind of paused. He said, “About 4 years ago, I had cancer, too.” He had prostate cancer, and his whole journey was, “Am I going to be lovable? Am I going to be functional? Who am I as a man, if that’s impactful to him?” 

It turned out that he came through whole. I came through whole. It was kind of a bonding experience for us because we were both like, “Oh my God, me too.” We comfortably talked about it. I could not have foreseen that date. It’s been kind of magic.

Esther, TPS: What a wonderful surprise after all the ups and downs. What a wonderful surprise to find somebody who got it, understood it, [and[ saw you for the wonderful person you are.

Annette: That was in March. We’re in November now. He’s been so supportive to me. I think he’s helped me feel whole in my body, too. He just loves me. He doesn’t see the scars. That doesn’t matter to him. It makes me feel more myself and lovable again.

What advice do you have for others?

Andrew, TPS: Annette, for all the people watching and listening. Mostly cancer patients, some family members as well. Some of them have gone through the depths of down feelings and struggle that you’ve talked about, and they want to get to a better place. What advice do you have because you’ve gone on this rollercoaster? 

We’re delighted that you have this relationship now. You’ve done this work. You feel good in yourself. We’re delighted to have you as our massage therapist and get to know you better. What do you want to leave people with? Maybe some suggestions of how they can get there, too.

Annette: There are a lot of resources available to people. When you’re going through treatment, there are groups that you can join. There are social workers, therapists, your network of friends, family, your spiritual life. 

I couldn’t do the group meetings. I tried a couple of different things, but I couldn’t look at a room full of people who are so impacted and had so much heavy content. I couldn’t do that, but I could see that a lot of people garnered a lot of benefit from that. 

One of the things that started to pull me out of the deep darkness was another cancer survivor reached out to me. She became my cancer mentor. A drain popped out, and I was bleeding all over the place. I called her. 

She would do this thing. “All right. We’re going to take a couple of deep breaths.” She just knew. She knew the language I spoke, and she could calm me down. She’d been through all of it. She’d been through all of it, so she knew. She knew my emotional content. 

She helped me step through kind of day by day. I felt like that was really valuable. So many people love and support you. You’re going to be okay. We’re here for you. All of those positive things. It’s really helpful to get in the nitty-gritty with somebody who’s been there, who’s been where you are. 

They tell you, “I hear you. That’s hard, but we’re going to get through this one day. We’re going to get through this day and then the next day.” You’re kind of in a 12-step program. It’s good to have somebody who shares a common experience with you, in my opinion.

Advice for single women with cancer

Andrew, TPS: As you had told us, you wondered at the very lowest point, “Would anybody ever love you again?” Now someone does. What advice would you, give to single women in particular, or even single men, where they can have hope that they could find a successful relationship?

Annette: Having the experiences that I’ve had, it became clarifying to relationships. That man that broke up with me, God bless him. Thank you. That was ultimately a good thing. 

Moving forward, I had to filter relationships through different lenses. What is important to me? All of this stuff is just a bag of bones. It wasn’t important. [Realizing this] helped me refocus what I wanted in a relationship. It had a lot less to do with the physical stuff, and it had more to do with somebody’s heart, their character, and their spirit. 

A spiritual process is very important to me. I’m more of a Buddhist. [The man that I met] has a different spiritual journey, but he has a spiritual journey. We were able to and continue to connect about that. 

Yes, you’re going to be different. Your body is going to change. It is going to be different. You are lovable. You always have been, always will be. I am love. We are all love. You just have to find people you can connect with that. 

I was afraid I was going to be unlovable. The universe has unloaded love on me from my family, from my friends, and eventually from this man. I was afraid I would not be lovable. That was just my pain talking. That was not reality. 

It just takes a while to move through that and to find that love and to feel at peace again. It just takes the time it takes. We all just have to process it in the time and in the way that gets us to the end goal.

Andrew, TPS: Right, but it is there. 

Taking daily medicine

Andrew, TPS: The good news is you are very vibrant. Your kids are doing well. You have a loving relationship. We wish you only good times and love. We’ll all have challenges going forward. You take a medicine to limit your risk of recurrence.

Annette: Yes.

Andrew, TPS: Like many women who’ve been treated for breast cancer have. You always worry, “Is there another shoe that’ll drop?”

Annette: Absolutely. The friend that was my cancer mentor, she stopped talking to me for a while at some stage. Her cancer had come back and metastasized. She is now fighting for her life. She just did not want to share that with me at that stage of my journey. 

I did not want to take the aromatase inhibitor for 3 to 5 years or however long it was. I dragged my feet and dragged my feet because it has side effects. I mentioned I had side effects when I did start taking it, and then I stopped it. 

I take that pill every day now, and I’m happy about it. I take that pill, and it reaffirms my will to live every day. It reaffirms that I’m a survivor. I got from that place to this place. Every day when I take that pill, I don’t think about the negative parts of it and the side effects. I think that’s me being a fighter still. I want to live. Some of that medication does definitely have side effects and complications, but well worth it.

Andrew, TPS: So well said. I take a daily cancer medicine, too. I do feel it’s my will to live.

Annette: Your life-affirming ritual.

Conclusion

Andrew, TPS: Thank you so much for sharing your story, your journey. It’s great that you’re in a better place.

Annette: Thank you both so much. You are a blessing in my life. Thank you.

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Featuring Katie and Pete Mang

“Cancer Friends,” hosted by Andrew and Esther Schorr, highlights stories and lessons from cancer survivors and their support system. For more “Cancer Friends” episodes, watch on our video channel here!

This segment focuses on Pete and Katie Mang, a young couple whose lives turned upside down after Pete was diagnosed with glioblastoma, a rare brain tumor. Faced with the burden of uncertainty for their family, they decided to always focus on the good.

Navigating financial toxicity and treatments was difficult, so they created Go With The Good to help other families find resources and support after a cancer diagnosis. Pete and Katie share the lessons they’ve learned along the way, including how they approach parenting with an uncertain cancer diagnosis, living with gratitude and finding support for the caregiver.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

A bit of the blessing of the uncertainty is it has had us focus on what’s really important.

Katie Mang

Every single time that we do something as a family with the kids, it’s special no matter what we do.

Pete Mang

Introduction to Katie and Pete Mang

Andrew Schorr, The Patient Story: Hello and welcome to The Patient Story and Cancer Friends. I’m Andrew Schorr, with my dear wife and partner, Esther Schorr. 

As a couple, we’d like to introduce you to another couple in Hudson, Ohio, and that is Pete and Katie Mang. First of all, thank you for joining us.

Katie: Thank you for having us.

Andrew, TPS: They have quite a story. For a number of years now, Pete’s been dealing with one of the most serious cancers, glioblastoma, also known as GBM. It’s usually older people [in their] 60s [or] 70s who have it. Pete, you were diagnosed at what age?

Pete: I would have been 34.

Andrew, TPS: Wow. So very young. We’re going to tell you the story of them, how it happened, being a young couple with 2 little boys, and eventually deciding, based on what they learned, to start a foundation to give back to people who are affected by a brain tumor.

Pete’s cancer diagnosis

Esther Schorr, The Patient Story: Katie, can you talk a little bit about how Pete was diagnosed?

Katie: In summer of 2018, it was a normal workday. I was driving home, and I got a phone call from Pete’s architecture firm, where he worked, that he had a seizure and was not communicating properly. 

They had called an ambulance to take him to the county hospital, where I met him. [I] found out that on the commute there he had two grand mal seizures in the commute to the hospital. After several tests — and we weren’t quite able to get the seizures completely under control — they determined it was a brain tumor. 

[It was] something that was a complete surprise to us with no family history and [with] Pete [having an] excellent health background. We consulted with a family friend who happens to be a physician, and he suggested we transfer to another hospital that had a cancer and brain tumor center. 

That took a little bit of a fight with the hospital system, but we got it done. He then ended up at the Cleveland Clinic, and he was in the ICU for a brief period of time, trying to get the seizures under control. 

»MORE: Patients share how they processed a cancer diagnosis

Awake craniotomy

Katie: Then for nearly 2 weeks, he stayed there until he had an awake craniotomy.

Andrew, TPS: What is that?

Pete: That was having surgery in your brain while being awake. They ask you questions, you have to answer those questions, and they figure out where they need to do the surgery at.

Andrew, TPS: What’d they ask you?

Pete: I remember [them] asking about the alphabet [and] some other questions that normally you would know. They figure out how far they need to go with the surgery as they’re talking to you.

Andrew, TPS: The goal is to cut out, for you, a golf ball-sized tumor, but not healthy tissue [so that you can] perform as much function as possible, right?

Pete: Correct. They want to get out as much as they can.

Katie: Based on where the tumor was located, speech was the primary concern, both in receptive and expressive speech, being able to retain the information and express it. Luckily, they were able to because of the craniotomy.

Andrew, TPS: Pete, you’ve told me sometimes you have to search for words or how to get the words out.

Pete: Right.

Treatment and symptoms

Andrew, TPS: You did have various therapy, but you got blasted, Pete, with first surgery, a lot of radiation, Gamma Knife, [which is] targeted radiation, [and] chemo. We’re talking about over 4 years. That must have been quite an ordeal.

Pete: There was always something we were doing at the clinic. There was always something.

Katie: Then the symptom management, too, that goes with that. It’s not just you go to the clinic, and it’s done. It’s taking care of the fatigue, nausea, and comfort care at home with it as well.

Esther, TPS: Now, Pete, what’s happening at the moment as far as your health?

Andrew, TPS: There’s a clinical trial. Tell us about all that.

Pete: Correct. I’m on a first phase trial, and I’ve actually been on that trial for over 2 years now. It’s an immunotherapy. I’m up doing this treatment twice a week. Usually, that day, I’m tired once I get home, so it gets hard sometimes.

Andrew, TPS: It’s remarkable, but we should mention you were telling us that you were on the treadmill jogging just a few minutes ago.

Pete: Right, absolutely.

Parenting with a cancer diagnosis

Andrew, TPS: Katie, this is a family event with younger people.

Esther: And younger children.

Andrew, TPS: And young children. Talk about that a little bit [and] how you cope. This [was] a major shocker that day you rushed to the emergency room. Your husband was having surgery. Explaining whatever you did to the children, the family, and coping yourself, and then doing that over several years now.

Katie: When this all happened, our kids were 2 and 5. [It was the] summer before our oldest started kindergarten. We had just moved into a new home about 6 months before that, and we were dependent on dual income [and] coparenting. We were both busy professionals. 

Everything kind of got flipped upside down in one day. I took some time off of work. With the kids being so young at the time of diagnosis, we kept things very age appropriate. “Dad’s in the hospital. Dad’s not going to be home for a little bit. When he does get home, here’s the things. His hair might be gone. He might be tired.” 

Our 5-year-old caught on to a lot more of it, where our 2-year-old doesn’t really know anything different. He’s now turning 7 next month, and then [the older one will be] a 10-year-old. They kind of have grown up, and we’ve reeducated and provided different levels of age-appropriate communication, also tailored to their personalities. 

To have 2 kids in the same family be so different requires a little bit of different levels and types of communication with them, too. Being that they’re still young, they don’t know the full story. What we have learned is this disease is incredibly unpredictable. 

To be on a clinical trial for 2 years, having treatment 2 years before that, [so] 4 years total. We couldn’t have guessed any of that. The burden of that uncertainty is a little too much to put on the kids. 

They have what we would consider an age-appropriate understanding of the differences in our life since then, like how we handle things as a family differently. We consulted with our pediatrician on how to talk and handle with this, especially right after it happened. The pandemic happened in the midst of all this, too.

Pete: Then I started the trial. 

Katie: With young kids being at home and being exposed to a lot of this, while going through this as well. We’ve consulted with the pediatrician. We’ve consulted with a child life counselor. Every year, I let the teachers know this is our family situation. We have excellent guidance counselors in our school, and they’re always aware of our situation. 

It’s a little awkward, but every year at the beginning of the school year, I send an email to the principal. They know me by now, but I explain what’s going on here, too. 

We’re lucky that we have navigated who needs to know in our children’s lives to provide the circle of support that’s age appropriate [and] that’s flexible. We have a plan in place if something bad were to happen. We just have to push the button, and everybody knows how to respond appropriately.

»MORE: Parents describe how they handled cancer with their kids

Support for the caregiver

Esther, TPS: Katie, obviously, this is a huge project for anybody. A family journey. You’re the key care partner here. How have you been able to cope with all this? What’s been the support that you get? You just described all this great support that you rallied for Pete [and] for your kids. How about you? What are you doing for yourself?

Katie: Over the last 4 years, I have built my personal support toolbox, but it’s taken a lot of trial and error to get to that point. I am very lucky to have a great network of family support in this area. I rely heavily on my close circle of confidants: my mom, my sister, a couple of close friends. 

I also know if I need to talk to my doctor or therapist. I’m not shy about it. I think one of the things that’s helped both of us is we are both really realistic about what’s happening. We talk about that, and we’re very open. 

I can come to Pete and say, “I’m having a bad day, and it’s because an MRI is coming up,” or, “I’m having a bad day because I’m stressed.” There’s no guilt in that, [which] maybe I felt early on. Pete’s super supportive.

Pete: We’re doing this together. The diagnosis is me, but it’s the whole family. We do this together.

Go With The Good Foundation

Esther, TPS: You’ve done something else together that you discussed. You mentioned to us that you started a foundation.

Katie: The day we got Pete’s diagnosis — because you don’t know right away. We have a brain tumor. Then there’s going to be surgery. Then they’re going to have a biopsy, and then 3 weeks later, you’re going to come back for a diagnosis and a plan. 

At that point, we learned that this is glioblastoma. That’s a shock. Doesn’t matter that we’ve just been through all of this, and now the diagnosis is the shock. One of the things that really came out — I don’t know if it was that night or the next day, but we kind of talked about how we’re going to handle this from a mindset standpoint. 

Pete said, “We’re going to go with the good.” Out of every situation, we’re going to find a couple of the key pieces of good, whether that’s having grace in the situation, getting a piece of good news or a good MRI, or just we had some chocolate and wine, and that was good.

Pete: Exactly. There’s always something good to look at. Like you said, we went to the restaurant and got a good dinner or something. Those little things add up, and so that’s where Go With The Good became [something].

Esther, TPS: Please explain what it’s for. What does the foundation do?

Pete: The base of the foundation is the focus is on young adults, families potentially, who have a brain tumor diagnosis. From a financial standpoint, it becomes difficult from that diagnosis. 

There’s a lot of information that we’ve learned throughout this 4 years and through research and everything. There was a lot that we’ve learned that some of these other families may not have learned. The goal was to pass this information to them and financially help them from that diagnosis.

Andrew, TPS: What a beautiful thing.

What key lessons have you learned?

Andrew, TPS: Katie, what are some of the key lessons learned?

Katie: That it would have been good to know going into this that brain cancer is, depending on different reports, the most or second-most expensive cancer to treat. Not only because of the extensive and expensive treatment, but all the treatments that go around it, like speech therapy, occupational therapy, seizure medications, [and] all those things. 

It would have been good to know what we were getting into. We want to pass that on not as something to scare you, but knowledge is power. You need to know where you stand in this, how and when to navigate, and where to find support for insurance disputes. 

All of the therapies I just described, there’s a line item in insurance for every single one of them. Learning the insurance system and also knowing when to pull in help has been valuable, both in peace of mind, but also our wallets. 

Also, knowing who to go to for the various types of support. If you didn’t know some of these resources could be found for free or inexpensive, you would pay a lot of money for help in a lot of these things, whether it is a legal dispute, care, or services. 

For one example, we were able through family reach to get free financial consultation. I was considering paying for that, and then we were able to get this at no cost, pro bono. [We also got] someone who understood our situation as a young couple trying to navigate the financial ups and downs with an uncertain diagnosis. 

Then we didn’t know that we could get brain-tumor-specific support through the network and clinical trial navigation services support with Medicare and Social Security.

Pete: Like you said, the seizure medication is very expensive, and we were able to find these groups that were able to really help financially on the costs of these medications.

Katie: We’re talking thousands of dollars a month.

Andrew, TPS: I can’t even imagine. What is the website address, Katie?

Katie: It’s GoWithTheGood.org. We just launched this year, so keep checking back as things keep getting updated.

Esther, TPS: The other big resource you mentioned was the Family Reach Foundation.

Andrew, TPS: Family Reach Foundation helped you, and they’re a great organization. 

The burden of uncertainty

Andrew, TPS: You used a phrase earlier, Katie, and I wanted to ask both of you how you deal with it. You said, “The burden of uncertainty.” 

First, Pete, how do you deal with the burden of uncertainty? Katie touched on how [glioblastoma is] so unpredictable, [as well as] what course it’s going to take and when. How do you deal with that?

Pete: To be honest, I’m not quite sure. The words aren’t coming to me right now as part of the aphasia. Finding some of these words are hard right now, to be honest.

Katie: I think the thing that you and I have both talked about [regarding] the uncertainty is making the most in the moment.

Pete: Right. 

Katie: Being very mindful and present in the moment, as well as prioritizing what’s important to us in the moment. We have made major changes to our life in terms of how we spend our time, how we do our careers, how we spend time with our kids, [and] how we make family decisions. Not just because of the uncertainty, but a bit of the blessing of the uncertainty is it has had us focus on what’s really important.

Pete: With the uncertainty, for me, having 2 young kids, I enjoy that time. I think that’s where I come from. Every single time that we do something as a family with the kids, it’s special no matter what we do.

Andrew, TPS: You mentioned you’re in a clinical trial with an immunotherapy. In a number of cancers, immunotherapy has been rewriting the history [and] the journey of people with what otherwise would have been cancers that would shorten somebody’s life dramatically. 

It sounds like in the moment, you’re giving back a lot, and you’re treasuring the time you have together. That’s a beautiful thing, too.

Living with gratitude

Esther, TPS: You talked about gratitude, and I think at the root of what you’re talking about is gratitude for the time you have together with your children. [I think you’re] spreading that essence of the way people should live their life, no matter what their situation is. 

In some ways, maybe that is the little tiny silver lining in people touched with cancer. It does give you pause to be grateful for the time that you have together. You sometimes don’t appreciate that.

Pete: Right.

Andrew, TPS: Not going to run for the bus or the train. You’re going to live in the moment.

Katie: What do we say? You’ve said this so many times. You’re like, “We don’t need to sweat the small stuff.” We let a lot just roll off it.

Pete: I go slow. Go slow with it. Why rush through things, you know?

Andrew, TPS: That’s the point. Slow down the cancer journey. You want to be cured. We all want to be cured. I’m a 2-time cancer survivor. We want to be cured, but short of that, while we’re undergoing treatment, enjoy what we can.

Esther, TPS: The things other than treatment.

Pete: Exactly.

Conclusion

Andrew, TPS: I’m sure they know your name well at the Cleveland Clinic.

Pete: Oh, yeah.

Katie: Frequent flyer. They were sending around a retirement card.

Pete: The guy was leaving, one of the nurses, and all the nurses signed it. They came and were like, “Hey, Pete, can you sign the card for us, too?” Because I’ve gotten to personally know some of these nurses. I know their kids, and I know what sports they’re doing.

Andrew, TPS: We wish you all the best. Thank you for sharing time with us. Good luck with the foundation and how you’re giving back. Certainly with your treatment, Pete, we wish you all the best. Katie and Pete Mang in Hudson, Ohio. Thanks for being with us. 

Inspired by Katie and Pete's story?

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Cancer Friends Series with Andrew & Esther Schorr

The Patient Story’s series “Cancer Friends” features Andrew and Esther Schorr. They co-founded a resource for other cancer patients and caregivers to help them through their diagnosis and treatment (Patient Power).

Explore our”Cancer Friends” series on our video channel here!

This segment focuses on Loriana Hernandez-Aldama, a 2-time cancer survivor who founded ArmorUp for LIFE. Loriana was an Emmy Award-winning broadcast anchor when she was diagnosed with acute myeloid leukemia. After a yearlong fight in the hospital, she was later diagnosed with breast cancer.

Now, Loriana is a patient advocate and the founder of ArmorUp for LIFE, a nonprofit focused on giving all patients the same access to better treatment options and tools. Loriana is also an advocate for prehabilitation, or taking steps to make our bodies healthier and more equipped to fight cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

I cannot sit back and not do anything. I have to help others. If I live, I will serve.

Loriana Hernandez-Aldama

Introduction to Loriana Hernandez-Aldama

Esther Schorr, The Patient Story: Hi, there. This is Esther Schorr with The Patient Story, and I am privileged today to be speaking with a wonderful, wonderful patient advocate and speaker. 

Loriana Hernandez-Aldama is an Emmy Award-winning journalist. She is also a 2-time cancer survivor. She’s a national advocate and speaker, and she’s the founder of ArmorUp for LIFE. Loriana, welcome. I’m so glad that you’re able to give us this time to talk today.

Loriana Hernandez-Aldama: Thank you. I always say I’m so happy to be alive [and] to be able to have these conversations that are so needed to help other patients. Thank you for having me, and thank you for thinking of me.

Esther, TPS: I’m glad you’re here, too.

Loriana: I’m so happy to be here and have my feet on the ground.

Acute Myeloid Leukemia and Breast Cancer Diagnoses

Esther, TPS: Loriana, let’s just talk a little bit about your cancer journey. I know it’s been a long and checkered one. What happened?

Loriana: I was living the life as a high-profile news anchor based in Austin, Texas, doing national fitness and medical stories. In an instant, after dismissing many warning signs that I now advocate about, I was in the midst of trying to have a second baby and then found out that I had AML (acute myeloid leukemia). 

I was misdiagnosed twice. [I] ended up getting on a plane thanks to connections that I had [and] ended up at Johns Hopkins for the fight of my life for an entire year battling AML leukemia. 

That was real quarantine, separated from my then 2-year-old son. That journey lasted a year. It didn’t work. I needed a bone marrow transplant, so it extended my time away from my son. It’s been a rocky, very tumultuous recovery. 

Then 5 years to the day post bone marrow transplant, I found out I had breast cancer. They were telling me, “We probably gave you the gift of time, not the gift of life.” 

Because I had no other bone marrow match in the registry, being Latina, my sister was my match. In the genetic markers, she gave me a marker called CHIP. CHIP is a newly discovered genetic marker, which means you’re going to get heart disease. 

They gave me back the leukemia marker, and then I got breast cancer. They think it’s either from the full-body radiation or from my sister’s DNA. How do we know that? My sister currently has breast cancer as we speak.

Gift of Time

Loriana: There are tradeoffs with everything. We talk about medicine. It did give me the gift of time. I hope that time is to watch my son grow up and live a long, long life so I can continue to advocate and enjoy my family.

But it has been a very rocky journey. All of that journey, as I was sharing with you, led to a lot of depression and PTSD. Being a journalist, I said, “I cannot sit back and not do anything. I have to help others. If I live, I will serve.” I am living in pain a lot [and] struggling a lot, but I am continuing to serve and really amplify the patient voice.

Coping with the Prolonged Hospitalization

Esther, TPS: How did you and your loved ones cope with this prolonged hospitalization? You went on a complicated treatment journey. You mentioned being in the hospital for a year. How did you cope with that? 

Loriana: I look back, and sometimes I wonder, “How did we do it?” What I did was I went into reporter mode, and I started to allocate and delegate roles. I created what I call a pit crew. I actually had to take out a spreadsheet and choose roles just like your church or synagogue [does].

[It was] like, “This person is going to help with my mother and find childcare. This person is going to help with our bills, help me make sure they get paid on time, or help me launch a GoFundMe. This person’s role is for meals.” I really started allocating roles based on what people’s strengths and weaknesses were in a spreadsheet. 

I had an advantage. I had the privilege in the sense that I don’t come from a privileged family, but I had connections as a high-profile news anchor. I had a huge pit crew and a huge spreadsheet. When you think of other patients like maybe my sister, who doesn’t have a lot of connections, it’s hard for your circle to help if you have no circle.

»MORE: Mental and emotional support when leaving the hospital

Waving the Flag for Help

Esther, TPS: It sounds like project management was a big piece of that. Whether you have that skill or there’s somebody in your pit crew, it’s getting organized. How am I going to manage this?

Loriana: I say to patients all the time, “You have to wave the flag and ask for help.” Even my sister, as she’s gone through this breast cancer, she’s like, “I’m not an extrovert like you. I can’t ask for help. I’m too ashamed.” 

[I’m] saying you have to wave the flag. If you don’t wave the flag, you’re going to put extra burden on me. I can’t make all your meals, and I can’t take it all because I have my own problems, too. I encourage everyone. What I did was create a pit crew of my own support system. 

Hospitals now — as I advocate, as you advocate — are starting to learn that we need to build better support systems, but you also have to not rely solely on them. You have to be an equal partner in your own success and be your own hero, in a sense, by humbling yourself and asking for help — whether that is financial help, getting your house clean, getting a meal — because you cannot do it alone. 

You have to be your own hero by waving the flag. I had to ask so many people for help — I still do — many times. We could not have done that. My husband ended up losing his job at the end of the 1 year of sleeping at my side and trying to hold down a job that we didn’t want him to lose. 

That set him back professionally, [and] we almost lost our house. We’ve gone through a lot. Financial toxicity is huge. My best advice to patients is the minute you get that diagnosis, really lay out what your needs are and how to delegate. If you go to church, think of how they do it in church. So-and-so is working. You have somebody who’s working there [and somebody] who’s in the band. 

Whose strengths can you lean on? Section it out so that not one person carries that whole burden. That’s really how we got through it. When I had breast cancer in 2020, that was even harder to ask for help because nobody could come to my house and help.

You have to find ways to do it and find out what advocacy organizations can help you as well.

Most Important Support

Esther, TPS: Out of that whole universe, in your particular situation, what of all those things were the most important support for you? 

It’s all important, but if you had to talk about a few things that somebody who’s newly diagnosed needs to focus on — I need these things — what were the things that came to the surface that were the most helpful to you and your family?

Loriana: Unfortunately, it was the GoFundMe, and a GoFundMe is not a plan. We don’t think of that when we think of preparing for illness [or] when we do retirement plans and other plans. We needed a GoFundMe, or we were going to lose our house. 

I needed that money to help my 75-year-old mother raise my 2-year-old son for a year. The GoFundMe was so important, and we need to work on a better way to support patients because I was really caught in a unique situation. I always say if you’re not underserved when you start with cancer, you might be when you’re done because the bills start to mount. 

I didn’t qualify for anything because they were basing it on my salary as a news anchor. I had no help, but we had no income. After spending a year in the hospital, you’re thinking hundreds of thousands of dollars [of debt]. We qualified for nothing. We had to rely on friends with a GoFundMe. Everybody should raise money in some capacity, and it’s okay to do that.

Esther, TPS: Don’t be embarrassed.

Loriana: No, you should not. I always say to people, “You never know when my story will be your story, and somebody else’s story could be their family’s story.” If you pay it forward, if you skip one coffee at a Starbucks and you donate $5 to someone’s GoFundMe, it may come back to you. It will come back to you in some other way. 

The GoFundMe was helpful. Find someone for childcare if you have children. Reach out to childcare facilities and say, “I have cancer, or my niece has cancer. Can you offer a reduced rate?” 

And they did. They offered a reduced rate for my son to go to school. Because my 75-year-old mother couldn’t take care of him all day, we had him there till 5, and then she needed extra help at night. I would say those are the two biggest things. I was in the hospital, so meals at that time weren’t helpful, but if you’re home —

Esther, TPS: They might not have been that good, but they were meals.

Loriana: I didn’t eat it. I gave money to the nurses, who were also my heroes, to go. They would go to Whole Foods and other clean eating grocery stores to pick up groceries for me. Who expects to be hospitalized for an entire year? 

»MORE: Tips on food and drinks to help during chemotherapy

There are many ways. You can have someone clean your house for you so you can spend more time with your loved ones. There’s so many ways that support can happen. Then support can happen even after. When you go into survivorship, you need a break, but you’re too broke.

Esther, TPS: So what do you do?

Loriana: I’m still working on that part. 

Importance of Prehabilitation

Loriana: We are working at ArmorUp for LIFE. We’re working on creating some programs where I found those voids. I mentioned pit crews for patients. We’re also working on eventually creating some retreats, where we can create ambassadors. 

You’re visualizing in the hospital that you’re going to get out, and you are going to get out. You are going to return to health, but in the process you have to prioritize your own well-being. If you don’t, you don’t want a secondary cancer. You don’t want to complicate the comorbidities that the chemo had. 

I’m involved now in a lot of research at MD Anderson and the Mays Cancer Center, and there’s a lot of research looking at the stress and the connection to cancer. Then they’re breaking it down even deeper to the stress and connection to cancer or cancer recurrence for cancer survivors. 

They’re getting patients and survivors into trials and having them doing therapeutic yoga and breathing and lowering their cortisol levels. They have a lower rate of recurrence of cancer, which is powerful.

One of the big things I advocate on is prehabilitation, prehab, preparing your body for illness.

ArmorUp for LIFE

Esther, TPS: Talk to me about ArmorUp. This is ArmorUp. Tell us about ArmorUp for LIFE.

Loriana: ArmorUp for LIFE is my nonprofit that I launched from my bedside because I reported from my bedside during my journey, being a network medical reporter. I just said, “This story is bigger than me. I’m learning so much from these doctors that is not getting shared with patients.” 

One of the biggest things I learned was that you have to prepare your body for illness. I said, “Why? How did I end up here as the clean-eating, green-drinking yoga enthusiast? They said, “Because guess what? Bad things can still happen to you. What sets you apart is how you showed up, and you showed up fit for this fight. Our hands are tied with so many patients here.” 

They said, “The more fit you go into illness, the better you present to us as a medical team, the better your position to prevail.” I had 25% chance of survival, but they said, “Look, you have all 25. I have people on this hall who have 25% chance of survival or should, and they’re not fit enough to get the chemo [at the] same dose as you. Now they have 10 or 12.” 

My message began saying, “Okay, we’re going to call this the 3 P protocol to be possible: prepare, present, prevail. You have to prepare your body for illness so you could present well to your medical team and position yourself to prevail.” 

Preparing can start the day of diagnosis. It can start in the midst of your treatment. It can start well before you ever got diagnosed, if you have other people in your family and you know you have the genetic markers for it. It’s called prehab, prehabilitation.

Increasing Positive Outcomes

Esther, TPS: Being healthy is prehabilitation to begin with.

Loriana: Right. We’re prehabbing — you, me, Andrew, [and] everybody we know. We’re prehabbing every day with the decisions we make. When I learned that, that was like a really eureka moment that I have to get this message out. The more you go in, the better you present, the better your position to prevail. 

That means your patient outcome, your chance of survival, goes up when you walk, when you stay mobile — mobility matters — [and] when you focus on risk reduction and lowering your stress levels. All of this plays a role in how well you go through treatment and your success rate. 

Talking to patients, I would say it’s never too late to get started to start reducing your stress, even though you’re in the midst of turmoil. Let’s try to find time to meditate and take some deep breathing and lower your cortisol levels, because there are studies that show [stress] can cause a recurrence. 

You don’t want to end up like me, where I’ve had 2 cancers. I’m always praying that there’s no third, that there’s another shoe going to drop. We have to really, in the midst of the chaos, still take care of our health and make decisions to eat right and exercise.

It can make a difference. Like they told me, you have all 25% chance because you’re getting exercise. You’re eating clean. You’re meditating. That is a huge component of your patient outcome and your success.

Esther, TPS: You’re stacking the deck, is really what you’re trying to do. Stack the deck so that should lightning strike, you’re not in the worst position. You’re in the best position to survive. 

Self-Advocacy

Esther, TPS: You’ve really covered what propelled you to do as well as you have in your illness and your journey. I know, too, that you spend most of your time now being an advocate for other patients [and] raising their voice. 

In this whole system of taking care of patients, who else has to hear this beside the patient? You can scream in an empty room, and nobody hears you. I know that the work you do is training patients. 

There’s this other piece that I hear from patients all the time: “My doctor’s not listening to me. My medical team doesn’t get it. The pharmaceutical companies may or may not have the drug I need.” Can you talk a little bit about how a patient can navigate some of that to their advantage?

Loriana: Yes, you have to be your own advocate. There is a fourth unofficial P, and it’s called being a pain in the neck. You really have to be pushy, push for answers, and be your own hero and advocate when you’re asking what other voices need to hear this. 

That’s why I go and talk to conferences. The pharma companies need to hear this. Your providers need to hear it. The nurses need to hear it. Everybody who’s involved in this whole ecosystem. That’s why I call it a pit crew so much with ArmorUp for LIFE, because we need a team invested in our success to successfully get us to the finish line. 

That means that our provider needs to lean in and listen and ask questions like, “How do you have transportation to get to this clinical trial?” Or ask about your family history or ask about your comorbidities. 

Like for me, I have baggage. When I was going through treatment for breast cancer, I tried to explain, “I’m a unicorn. I had leukemia, I had a transplant, and I don’t even have my own DNA. You need to talk to my leukemia doctor. You cannot operate in a silo. Call him up. Find out what is best.” 

I felt like I had to be a reporter doing email intros. I said, “This is so much work. It should not be this hard to survive.” I say that the providers need to listen. They need to listen. I understand that they’re busy with charting, there’s a shortage, and they only have 15 minutes.

To the patient, bring in bullet points. Help get them the most information in those 15 minutes. To the provider, be aware of your implicit bias. I know that you need to ask the patient more questions than just, “How are you feeling?” or, “Your counts are good.” 

It needs to go, “Do you have transportation? Do you have childcare? What’s getting in the way and keeping you from coming to this treatment that you need or keeping you from taking this drug?” 

We have the providers. We have the pharmaceutical companies, and the pharmaceutical companies have a lot of patient support programs. They’re called PSPs. Who knew? I never knew about that. I told them at the conference I was just at. How would I have any idea that all this work exists? Nobody said.

I was on 40 drugs from probably so many different companies. To patients, if you are having trouble, there are programs that pharmaceutical companies have that you can say, “I’m on this particular company’s drug.” Call [them].  

They may have a nurse navigator who could talk to you, but really we all need to come together, collaborate, and let each other know we’re here for you. It comes down to communication and knowing what’s available.

Esther, TPS: True that, and from some recent personal experience I’ve experienced. Being a care partner, not with my husband, but with my aging mother, where the system you’re talking about wasn’t listening. 

It really was literally a 2×4 that had to be taken on by me and my siblings to get people to listen. I think people have to realize that our systems, especially in the U.S., are complex enough that unfortunately it falls to the patient and their pit crew to try to make those communications happen. 

Second Opinions & Shared Decision-Making

Esther, TPS: I think you’re really right, Loriana, that there’s a lot of onus on the patient and their pit crew to do a lot of this. I think that a lot of people just aren’t prepared for that. [It’s] one more burden they have to take on to get the best care they need.

Loriana: It has to be shared decision-making. If you’re a patient and you’re listening, you can’t just say — I mean, you could be at the best institution or in a rural community. You can’t just take that one person’s answer as the Bible for you.

I would say get a second opinion even when you like the first. I loved my first opinion. They said I didn’t have cancer. But I still didn’t feel right, so I got another opinion. They said I didn’t have cancer. It took my fertility doctor to tell me I had AML leukemia. [After] the 2 doctors who misdiagnosed me, I said, “That’s it. I’m going to Johns Hopkins. They know what they’re doing there. They have to save my life.”

Esther, TPS: The additional opinions and being clear whether the person you’re talking to is really listening.

Loriana: Absolutely. Be very clear with your doctor what barriers you have in place: childcare, transportation, finances. Ask him or her what resources [are available]. Can they connect you to the patient navigator? If you’re not getting answers, keep going up the chain. 

Ask the chain of command. Ask for the financial navigator. We’re starting to hear more navigators now. They’re taxed. They don’t have enough help, but keep asking and keep pushing. Eventually somebody is going to help you. Don’t just take one opinion and think that that is the best opinion for you.

Helping Underserved Communities

Esther, TPS: Let’s switch gears for a second. There’s a whole other area of the work that you do — and it’s part of who you are — as a Hispanic health advocate. 

What do you see as the biggest challenges in meeting the needs of some of the underserved communities? Whether they’re Hispanic, black, or poor, rural white communities. It’s not just a matter of a minority. It’s really more the communities that aren’t getting what they need. What are the biggest challenges right now?

Loriana: Yes, there are so many communities who are underserved [and] who certainly need help. They get left out. So many times we hear at conferences about these high-level institutions. I kept saying, “If there were patient voids at the top, what’s happening in our rural communities when it’s one doctor, with not getting a second opinion, and that’s the only doctor you have access to?” 

One of the biggest voids, I will say, in the Latino cancer community — I spoke at their conference earlier this year, and they’re expecting a 142% increase in cancer cases just among Latinos. This year among Latinos, they also say that the number-one killer for Latinos is cancer. Again, there are other startling statistics for other underserved communities. I just happen to know those off the top of my head. 

One thing I say is we’re talking a lot about diversity in clinical trials, and that’s great. I’m glad that it is now a hashtag and a trend. But if we can’t get our communities, like my Latino community, to get into a screening because they don’t want to know, they’re in denial, for whatever reason they’re not going, and there’s trust issues, [then] they’re not even going to make it to a clinical trial. 

»MORE: Learn more about the process of clinical trials from one program director

We need to not put all of our eggs in one basket about clinical trials, which are important, and having diversity and fitting more people in. [We need to] focus on the voids in the Latino community, the black community, the Asian community, the Indian community, the lesbian-gay community, [and] all these communities that have certain cultural competencies and different reasons that they don’t go into screenings because there’s trust issues. [We need to] focus on getting them into screenings and build trust at every point along the way in the journey. Then we have them here for the clinical trials.

Esther, TPS: Not treat the symptom; treat the cause.

Loriana: We are more than just our disease. Look at the whole ecosystem, the whole patient, who they are, where they come from, and why that’s a barrier. How do we get them into more screenings? We have to build trust. You can’t just come at them out of nowhere. 

It’s just like, “Bam, here, want a clinical trial?” No. Where were you in my community? That’s why we’re hearing about some advocacy going on in churches and barbershops, where there is trust. That’s where I find all the voids.

First Steps for Advocacy

Esther, TPS: Let’s say one is a newly diagnosed patient or a survivor that is [reading] this. They say, “Okay, I want to raise my voice. I want to be involved in paying it forward.” How do they do that? Where do they start?

Loriana: The first, quickest thing you can do is start raising your voice by yourself through social media, because that’s something everybody has access to. I would start thinking of when you share your post, share not just what happened to you. 

It doesn’t have to be an angry post. [It can be] something about what you went through and what the takeaways are. You can post that through social media just to share, like, “Hey, you should get this screening. Did you get your screening, did you get your mammogram, and did you get your colonoscopy?” 

That can eventually grow, but then also reach out to organizations for areas that you’re passionate about. [Maybe] it’s prostate cancer or leukemia. Is it breast cancer, or is it overall just all cancers? Wherever you want to get involved and reach out and say, “I want to help in some way.”

Esther, TPS: They do that in the medical center, too. I would surmise that they have patient survivors that go and visit other patients to try to support them.

Loriana: There are so many ways to get involved. Again, the quickest and easiest way to get started, as it grows and as you reach out to others, is through social media.

Advice for Advocates

Esther, TPS: Listening to other people who are trying to figure out their path toward health, potentially for advocating for other people, and as they advocate for themselves, what advice would you give them?

Loriana: There is so much that I want to say right now.

Esther, TPS: I know you just gave a lot of advice.

Loriana: First, I do want to mention some things that we are launching, which are very important, because it is going to help people. In February, we’re launching a prehabilitation awareness month because it never existed. It’s so important. We’re calling it PREhabilitation Nation. 

I talked about prehabbing. That prehabilitation that I mentioned is something we can all be doing. If we can help risk reduce, which is prehabilitation, in our underserved communities, they can present better and be better positioned to prevail. 

That means maybe where you would not have qualified for intensive chemo, if you show up in a more fit state, maybe you can, which can change your outcome and help you survive cancer. That’s one big campaign that we’re working on. 

I just encourage patients all the time that you have to get involved and ask questions. You just can’t take what the doctor says, he or she, no matter how brilliant they may be, as that’s the final say. 

Even when I fly now to Johns Hopkins and see my oncologist who saved my life, once he says, “Your counts are good,” I want to skip out the door and sing “Zip-A-Dee-Doo-Dah” out the door. But I forget. Wait a minute. I have all these other problems. 

Go in with notes, remember, and help connect the dots. Who do I need to see? If you’re a cancer patient, do you have a cardio oncologist? The chemo is going to impact your heart. You need a baseline. Do you have a dermatologist oncologist? If you’re a woman, do you have a GYN oncologist? Do you have an immunologist? 

You have to start building your own pit crew. I say to patients, get empowered, ask questions, and even on a good day at the doctor’s office, ask more questions and find out who else you need to be connected to.

Esther, TPS: And bring a henchman if you need to.

Loriana: Yes, absolutely. During COVID, that was hard during the pandemic. Now, with Zoom especially, you can easily do that. If you could do telemedicine on a call, you can have somebody who might be more health literate than you. 

Even if you’re health literate, when you’re in a time of crisis, you don’t remember everything. Once they give you some bad news, you don’t hear another word after that. You need somebody who can be there with you to take notes, to recap, [and] to ask if you can record the conversation. I just can’t stress enough that you have to be your own advocate. You can’t count on the system to do it all for you because they don’t have all the tools to do it.

Conclusion

Esther, TPS: Loriana, thank you so much for all of your energy and your insights. Your energy is amazing.

Loriana: I’m a little high-strung. Can you tell? I’m just happy to be here and be alive.

Esther, TPS: Not at all. It’s really inspirational, because what you said about preparing for a unique journey is really what it’s all about. It just takes a lot for somebody to go through it. You got to pull it all up from the inside. It’s hard work to survive. 

Loriana: I say that as I struggle, and I’m very transparent about my depression and PTSD. Some days it’s so hard, and I have to remember that we all have purpose. For me [or] anybody who’s going through struggles, if you don’t feel like you have purpose, find advocacy, because that helps me with my depression. 

I went from living the life to fighting for my life and so lost, wanting to take my own life because there were no tools and survivorship for me. My news director reached out to me, gave me purpose, and helped me get started. 

If you give someone purpose, you feel like the world needs you. Even if you’re suffering [from] depression, you’re less likely to check out because you know the lives you can impact. So I’m glad. Esther, we need a whole big room. We need a stage. We need to take our show on the road.

Esther, TPS: Loriana Hernandez-Aldama, thank you so much for sharing your story with our Cancer Friends community. This is Esther Schorr, and wishing all of you the very best of health.

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