This is the second installment of the Cancer History Project’s series in honor of Cancer Survivors Month. The interviews are conducted by Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, who is also a historian of medicine and a guest editor of the Cancer History Project in June. Last week’s oral history with Judy Orem, a CML patient who was part of the initial clinical trial for Gleevec, is available here.
This is the second installment of the Cancer History Project’s series in honor of Cancer Survivors Month.
The interviews are conducted by Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, who is also a historian of medicine and a guest editor of the Cancer History Project in June.
Last week’s oral history with Judy Orem, a CML patient who was part of the initial clinical trial for Gleevec, is available here.
At 25, Elizabeth Carner was diagnosed with stage 4 colon cancer.
“I mean, the first thing that went through my head was just looking at mom and dad, and it’s just like, OK, well, where did all the other stages go? Because we literally went from my colonoscopy as being OK to everything’s not OK,” Carner, now 33, said to Deborah Doroshow, an oncologist at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai.
At the time, Carner, who studied theater and stage management as an undergraduate, had a coveted job at an equity theater, Cincinnati Playhouse in the Park. She hadn’t thought much of her recent weight loss before the diagnosis—going from 175 to around 150—chalking it up to the hustle of theater life.
Then, one day, Carner fainted at work.
“I was bleeding out,” she said. “When I was in the bathroom, just trying to figure out how to manage this, I looked in the mirror and I realized that my face was ghost-white. I’m pale to begin with—with the genetics of the red hair and blue eyes and everything under the sun, burn like a lobster, whatnot. But for me to see this and just be like, ‘Oh, shit, I need to talk to somebody about this.’”
Carner knew members of her family were carriers of Lynch syndrome, a genetic mutation that increases the risk of colon, endometrial, and other cancers. Her grandmother had survived ovarian cancer in the 1950s. Her father had been a survivor of stage I colon cancer. Great uncles and second cousins had all experienced stage 1 or 2 cancer—all when they were over the age of 45.
Her family could even trace its history with cancer back to around 1800, to a relative they nicknamed ‘Cancer Catherine’—“We believe that she is the one that had married into the family and brought it along.”
Over centuries, cancer became a part of the family lore.
“It was one of those things where you get told about family history, but you think it’s never going to happen to you. It didn’t quite click,” Carner said. “I knew that there was colon cancer history in my family, which we had openly talked about. But the thing was, it didn’t even register for me, because all of those instances—the age was 45. I think at the time, the screening age was 50 and since then they’ve knocked it down to 45, but it wasn’t even on my register.”
Carner had been screened for colon cancer pretty much yearly. She had a colonoscopy just before she moved away from her family in Rockford, IL, and had another since then in Cincinnati. Doctors had previously found polyps, but they were benign.
The bleeding subsided after Carner went to the emergency room, but continued at home. She knew another colonoscopy was necessary.
“This go around, the doctor went in and found it. Apparently my cancer was not on the inside of my colon, it was on the outside,” she said. “How they explained it to me, is that the inside was the flower—the polyp was the flower, but on the other side was all the root.”
Thus began a months-long odyssey of six hour drives to Mayo Clinic, where Carner’s grandmother had previously been a patient.
“To be perfectly honest, I think those were hard because you’re doing the six hour drive up. And when you have six month appointments, or three months appointments, weather turns crappy and everything,” Carner said.
The combination of cancer and the aggressive treatment she opted for meant that it was difficult for Carner to keep food down. Her weight dropped from 150 to 119—on her 5’11 frame.
“I had to tell my friends, literally everything is tasting like cardboard. I would choke it down if I could, but it’s not staying,” she said. “I never, never, never want to have to compare myself to a Holocaust victim, but I remember looking in the mirror one time and being like, ‘Oh, shit, I’ve seen these photographs before.’
“Seeing your pelvic bones when you come out of a shower is—no shakes. I can’t listen to weight watching radio ads anymore. I can’t do it. They say lose so many pounds in so many months, I’m like, that’s not healthy. Don’t.”
The treatments physically exhausted Carner. Her mother insisted that she take naps so that she could have energy when friends came to visit.
“But the thing was, a lot of the times it didn’t quite work because I’m one of those people where I get excited to see them,” she said. “A lot of on-the-mattress savasana, more or less. Which also is another reason why—morbid personality that I am—I completely understand why they call it ‘corpse pose’ now.”
Mentally, it was difficult for Carner to see college friends embark on their careers, relationships, and personal lives.
“The thing that probably hurt more than the surgical procedure to remove the darn cancers, was going up on social media,” she said. “And mind you, [I had] a recent gut wound, in which they always say hurts worse than any other type of wound. And it may be just the psychology. But I probably had more regret and hard time coping with the fact that every time it felt like I turned around—I was seeing this from one of my friends. ‘Oh, look at the ring. Oh, look at this. Oh, look at how my life’s taking off.’
“And here I am, having to put my whole life and dreams on pause because of the fact that I got something that I didn’t ask for,” Carner said.
Carner found that her family’s to-the-point nature, and her snarky attitude at doctor’s visits, kept people upbeat.
“The medical team really appreciated me being the morbid, smart-alecky, sassy, redhead that came in,” she said. She’d say things like—“‘Hey, I was really happy to see you earlier. I wish I didn’t have to, but I’m really happy to see you. I’m glad that you’re taking care of me.’”
At the same time, few people could understand how Carner was feeling.
“It’s hard to say that anybody really, I felt, truly got it. Because one, I didn’t want them to get it. Because if they would’ve gotten it, they would’ve gone through the same hell that I went through,” she said. “I think it was very telling when I told my parents: ‘OK. I remember my bullies from elementary school, and from high school, and all that stuff.’ I was like, ‘I would not wish this on them.’”
If anything, Cancer Catherine was a comfort.
“The family history thing is monumental, especially when you go to a gravesite and you think about… ’Oh, crap. Man, they might have actually experienced the same thing I have,’” she said. “I mean, it’s mixed emotions, but more or less it’s not anger. It’s not sadness. It’s more or less like, ‘Dude, man, I feel like you.’”
TJ, a friend of Carner’s mother, was bedridden with lung cancer. She understood.
“I went to go visit her, and she was talking about the treatment and the pain she was in, and then talking about morphine and all that stuff. And I was just like, ‘I’m sorry, I know you’re in a lot of pain, and I really don’t know how to,’” she said. “She’s like, ‘I know you do.’ This is what I mean, talking about, I want my friends to get it, but I don’t, because that was the hardest thing of just both of us knowing that each of us felt that pain.”
In January 2015, doctors told Carner and her family that she had six weeks to live. She recalls her father giving her a choice: “Do you want to try and go back up to Mayo or do you not feel like you want to?”
Though faced with snow and ice and rapidly deteriorating health—she had been in a wheelchair by that point—Carner decided to go. That’s when Carner first heard about the clinical trial that would eventually cure her cancer.
“The doctor we were seeing had a colleague, and he was just like, ‘Hey, my colleague is over at Ohio State, and they’re part of a study that’s for this new immunotherapy drug. And they’re trying to try it out on a couple of the cancers. It’s mostly been used for lung cancer,’” Carner said.
The drug has since become known as Keytruda (pembrolizumab), and doctors thought Carner might be a good candidate because of her specific genetic mutation—MSI (microsatellite unstable)-H.
When she arrived at the desk of Richard Goldberg, a GI oncologist, who at the time was the physician-in-chief at The Ohio State University Comprehensive Cancer Center, Carner had tumors in her neck, breasts, and abdomen. She had previously had masses on her knee and her brain.
“She had exhausted conventional therapy, she came in in a wheelchair, she just had her femur pinned…she was so depressed, she could barely hold a conversation,” he said. “Here is the 26-year-old who is dying of advanced cancer.”
Carner started the trial in February, and within a few months had gone from a wheelchair to crutches—only requiring the wheelchair when she tired easily. By April or May, doctors had found that the drug was working.
“It was rather drastic,” she said. “I mean, for Dr. Goldberg to see me, when I first walked in, I didn’t even walk into his office. It was like, I rolled into his office with my family, because I had my crutches and I was in a wheelchair. I was tired. I couldn’t really hold my head up as much as I was trying. Posture is not a forte when you’re sick.”
How could she tell the drug was taking effect?
“I don’t want to necessarily say my mood was improving, but it was more or less the numbers, the blood counts and all the blood draws,” she said.
About a year out from starting the trial, doctors didn’t find any evidence of cancer. Carner remains in complete remission—eight years from when she was first diagnosed.
She joined the theater world again, and was in the ensemble of a local production of “Assassins” in summer 2016, when her father died suddenly of a heart attack.
“And the thing that’s a little bit difficult is that I’m happy that he knew that I was on the up and up. Like I said, I was graduated from three months to six months for appointments. He knew I was actively trying to do what I loved and get back to normal. None of us were ready for that,” she said.
“The drug worked, and I [was] trying to get my life back on track with everything else that apparently has been thrown at [me], which has more or less affected my entire family because of the loss of a parent—but then also me trying to dive back into theater on a production level,” she said.
Carner received her Masters in arts administration in 2019, and is currently in the ensemble for a production of “Hello, Dolly!”
“And that’s the other thing that I’m just trying to come to terms with, and this comes with job applications or just in general, is like, I now have to think of myself as, I’m healthy, but I have to consider the fact that my body’s not how it is internally as it should have been probably,” she said.
Beth Carner: Now, I’m 33 years old. I had my birthday in February.
BC: It’s really funny. I’m happy and thrilled. I know everybody freaks out about 30, but I’m actually loving it right now. I never thought I’d actually say this, more or less, not because of everything that’s happened with me, but because I never visualized myself attaining this—but I now have my Masters, in essentially arts administration from Northwestern.
That’s been fun and a really wonderful roller coaster. I’m still doing what I love, and was originally setting out to do when I left college. I mean, also life has been throwing everybody some curveballs. The pandemic threw a big, huge wrench in that. Not just mine, but everybody’s.
BC: Other than that, daughter, sister, friend, weird or regular—it kind of depends.
BC: It’s great to be able to dance and move around. I was so excited because I haven’t worked with this choreographer since I was 16. That was a really big, wonderful surprise, but also just really nice because when you’re a teenager, you start learning this choreography, you have no bloody idea what you’re doing. As an adult, having had a little bit of training, you’re just like—”oh yes, please get me more.”
BC: I’ve been loving it. I’ve been sweating, but I’ve absolutely been thrilled to do it.
BC: I guess it would probably start immediately after I graduated in college. I was a transfer student at Beloit College. With transfer students and trying to make sure all your credits are aligned, and you get what you need to graduate, I was maybe about half of a semester behind everybody else for when I originally wanted to graduate.
I graduated in December of 2012 in a theater, stage management capacity, with a minor in history. I was very excited. I was actually so enthused. I was doing an internship at Cincinnati Playhouse in the Park, which was an equity theater.
I couldn’t have been happier for that to be my place, because everybody wants to work in an equity theater if you’re going to do this professionally and get your foot in the door properly. I was super enthused. I got to work with wonderful people. I’ve been keeping track of their careers since then. That’s been fun and phenomenal—and rooting from the sidelines.
Unfortunately, after I finished, or barely a few months before I was due to finish my contract, I had an episode, I guess, would be the lack of a better word for it, where I was bleeding out at work.
I actually had a little bit of a fainting spell. I called the stage manager, she was in the green room. Her and the wardrobe mistress, who I had become very good friends with, we conferred and figured that the best course of action was just to take me to the emergency room because I was losing blood.
I mean, being a female, you’re just like, OK, maybe I’m having my period. When I was in the bathroom, just trying to figure out how to manage this, I looked in the mirror and I realized that my face was ghost-white. I’m pale to begin with—with the genetics of the red hair and blue eyes and everything under the sun, burn like a lobster, whatnot. But for me to see this and just be like, “Oh, shit, I need to talk to somebody about this.”
[It] really kind of hit home. The wardrobe mistress, who’s still a really good friend and we exchange letters, she took me to the local hospital, took me to the ER, where I remember walking in there with her and telling the nurse my full name, but that was as far as I got, because after that, I think I dropped to the floor. The next thing I know they’re putting me in a wheelchair, taking me into a room and giving me IVs and all that other stuff. Yeah.
Because it was an internship in Cincinnati and I’m originally from Illinois and Rockford, that meant that I had to call my parents and give the news like, “Hey, guess what? I’m in the hospital. I feel fine.” But my mom wasn’t having any of that. My dad, at the time, he was like, yeah, there was no way on earth that we weren’t going to make that six hour drive to come see you and see how everything was going.
I ended up finishing out my contract, which actually, I mean, at the time—had been extended because I was taking over from another intern who had been there the year previously. She had just received a job offer at one of the Shakespeare festivals out west.
In a way, I got to extend my stay longer than I thought, but not under the circumstances that I really would’ve appreciated and liked. But I did go away from that experience with quite a few friends and a very good experience from it. Hopefully I was like, OK, I’ll go home, figure everything out and then I’ll just … because I was trying to apply and figure out a way to stay around so I could potentially work or do more equity theater.
But then when I got home, I had the same episode happen again.
BC: The bleeding was under control, but what had happened at the Playhouse is that I was, rectally bleeding out.
The thing was, this is March, April. I had a bit of the flu. I was throwing up in the bathroom. The other kicker was, everybody talks about weight loss being a little bit of a indicator of…like a drastic weight loss. But the thing was, stage managers and theater people tend to run around a lot just because it’s a lot of, as they say, hustle.
I was because I was like OK, well I’m already doing a lot of steps because of the routines and all that stuff that I’m doing. I was cutting celery. I think my weight when I first started there was probably 180, 175 or something about. I was like, OK, well I’m a little bit on the pudgy side. It gives or takes. With my height being 5’11 and whatnot, there’s a fine edge that you end up teetering on. I was like, I would maybe like to get down to 150, that’d be cool, or 155, that’d be fine. I’d reached that goal. I don’t think it was a quick process, but it certainly wasn’t anything that I had thought about.
Regardless of the fact that there—I mean, I knew that there was colon cancer history in my family, which we had openly talked about. But the thing was, it didn’t even register for me, because all of those instances—the age was 45. I think at the time, the screening age was 50 and since then they’ve knocked it down to 45, but it wasn’t even on my registe.
I’d come home and was trying to get through stuff. I’m still optimistic and I’m like, oh yeah, I’m just going to do this. Another episode happened at home and I’m just like, OK, we’re checking this out because there’s something going on.
I was scheduled to have another colonoscopy as well. Like I said, family history. I’d actually had one, both before I went to Cincinnati and while I was down there. They had found polyps, but nothing to indicate cancer. Well, this go around, the doctor went in and found it. Apparently my cancer was not on the inside of my colon, it was on the outside.
How they explained it to me, is that the inside was the flower—the polyp was the flower, but on the other side was all the root.
The doctor walked in and he was like, it’s stage 4. The only thing me and my dad and my mom and I were thinking is—I’m 25. This is 20 years ahead of everything. Not to mention the fact that nobody in my family, male or female, had ever heard of anybody in our family getting it this quick. I mean, the first thing that went through my head was just looking at mom and dad, and it’s just like, OK, well, where did all the other stages go? Because we literally went from my colonoscopy as being OK to everything’s not OK.
The doctor told me, when he said that, I remember looking over at mom and dad, and we’re all in a little bit of shock. But then I—and I’m not trying to play superhero, this is just how I remember it. I mean, maybe my mom remembers it differently.
My sister was still away at school. But I remember looking at the doctor, “I was like, OK, what now?”
BC: Well, the nice thing is, Dr. Patel, and unfortunately he was a local doctor that’s no longer here, but he had a really good rapport with my dad. My dad’s side of the family is actually where the colon cancer comes from. We had a bit of a rapport, and Dr. Patel knew that .we don’t tend to like the sugar coating. It’s like, just give it to us straight. It’s not going to change the outcome.
BC: No. I mean, I wasn’t figuring on looking out for this until I hit 45.
I was figuring … I was like, OK, I’ll be 45, 50, have kids potentially, maybe a grandkid on the way. I don’t know. I mean, I had no idea what my life was going to contain, but it certainly wasn’t this.
It was one of those things where you get told about family history, but you think it’s never going to happen to you. It didn’t quite click. I do know that, well, after that, like I said, my dad’s family is the side that has the colon cancer and it comes through his maternal side. My grandmother was still living at the time, and she had a patient relationship with Mayo, more or less.
We ended up going up there for chemo, radiation for me. We did the genetic background. I have—and it started with her, so it’s not going very far, but that meant that my little sister was also tested.
BC: Oh, there’s quite a lot.
BC: I don’t think there was an answer, because I think he was just about as baffled as the rest of us. The fact that we had done our due diligence, so he had done the colonoscopies on me.
It was just a matter of, I think, once we realized that it was on the outside, and that’s not particularly the first place that everybody looks in a colonoscopy because you’re inside a colon.
I’m not even sure whether there is a procedure to view the outside of your intestines. Just more or less, I think it was the realization of, OK, there’s potential for this thing to pop up in whatever stage it bloody well pleases, no matter how diligent or how often you do. Because I think at that point I was doing it yearly, I think.
BC: I’m thinking yearly colonoscopies, but I think it was … when we found the first polyp, which was, I believe the word is benign.
It was benign, but they were just like, OK, well, we found a polyp, we cut it off, and there wasn’t any indication of this—it’s benign. But because of your history, we’re going to do this again. Was the conversation that had happened.
Hence why I ended up having a colonoscopy in Cincinnati and not under Dr. Patel. Like you said, it’s just one of those things where it’s just trying to comprehend the fact that you’re just like, OK, I know there’s stages. You’re just trying to figure out, OK, what happened to make it progress so fast?
BC: I think it was just a little bit of, more or less a shock, and trying to figure out what the game plan was after that, which had been discussed while I was in the hospital a little bit. So many years have passed, and also it’s your memory’s trying to block out the bad juju and whatnot. I do remember going into that colonoscopy, it felt like it was an emergency colonoscopy because they wanted to check out why I was bleeding.
BC: Well, the nice thing was, our family, along with being very blunt, is very good at passing along about as much as we can for family history.
Which is very, very beneficial. I know from my mom’s side, there’s a history of Alzheimer’s because I actually saw that one firsthand because my grandfather did have it. He did not pass away from the disease. He passed away from prostate, but it’s still a heartbreaking thing to see.
On my dad’s side, like I said, the colon cancer originates with…my grandmother didn’t have colon [cancer], she had ovarian. For the longest time, it was believed in the family that the men got colon, the women got ovarian. My grandmother, she got ovarian cancer, I think, at age 32, around the age I am, actually.
But the thing was, and lucky for her, she had already had my father and my uncle. I believe during the 1950-era, that the procedures were not up to what they are now, where there’s options or something. Thankfully my dad and my uncle were already born, and that wasn’t really a problem with me coming down the line.
There had been a whole lot of discussion, but I mean, I know that my great-uncles have. Second cousins that have experienced this, but they’re all older than me. They all experienced it at 45. It wasn’t the degree of, oh, stage 4. This is, oh, it’s stage 1 or stage 2.
Truth be told, I haven’t reached out to those cousins because there’s enough of an age gap between us that I really probably have never met them in my entire life. There is one lady, as we were talking about earlier, talking about doctors going back in history and finding a patient who was back in the 1800s.
We actually have an ancestor that is known in our family, and this is going to sound so bad because I feel so bad for the lady, her nickname in the family is Cancer Catherine. We believe that she is the one that had married into the family and brought it along, which is a horrible way to think about it.
BC: I would probably say at least 1800. I’m not entirely sure.
BC: I do know that I have been by that woman’s gravesite playing, at least growing up as a kid.
BC: Well, it’s more or less, the family history thing is monumental, especially when you go to a gravesite and you think about, oh, this person. It’s another to realize like, “Oh, crap. Man, they might have actually experienced the same thing I have.” I mean, it’s mixed emotions, but more or less it’s not anger. It’s not sadness. It’s more or less like, “Dude, man, I feel like you,” kind of thing.” Which is really weird.
BC: No. We were probably very much of the fact that it’s, we don’t like to ignore shit as a family.
Because we tend to find that everything that we ignore, I mean, not just for us, but just a general broad brushing, it tends to bite you in the butt very, very hard if you do that.
BC: My dad was actually probably very much the researcher of trying to figure out exactly all the stuff that was going on with me.
I will say that both my parents working for the airline, my dad’s health benefits for me, at age 25, because you have to remember, 26 is when everybody bounces you off of everything. I mean, we managed to find a way that I could stay on his insurance. Thank God.
BC: It was a relief. The other thing was, around the time that I got diagnosed, my mom who was a flight attendant, the company she was working for, was offering what they refer to as a buyout. They have people who—I believe at the time my mom would’ve been 58, 57. They try to get people who are close to a retiring age. For pilots, it’s 65, and most flight attendants, there’s no retirement age for them, but I think my mom was planning on retiring around the same time.
But buyouts give you extra money, plus all the benefits that you will come into, if you say bye-bye early. With me being sick and the chemo and radiation, you pick your poison. It’s not exactly a fun, howdy-doo time that I would recommend to anyone. Because I went—we were talking about my earlier weight, what was 175, when I was at Cincinnati, and having gotten down to, I was a really happy 150. Chemo, radiation and the cancer combined, I at one point dropped my weight, not intentionally. I was trying to keep everything down. I was trying.
BC: I mean, I get it.
BC: I know it is, but for—people don’t get—well, just eat or something like that. I had to tell my friends, literally everything is tasting like cardboard. I would choke it down if I could, but it’s not staying. I can’t, which probably goes into the fact that now that I eat spaghetti, I’m just liberally putting all sorts of red pepper in that because I was like, taste buds are a godsend. But I mean, my weight dropped from 150 to 119, for a 5’11 frame.
I never, never, never want to have to compare myself to a Holocaust victim, but I remember looking in the mirror one time and being like, “Oh, shit, I’ve seen these photographs before.”
BC: It is. Seeing your pelvic bones when you come out of a shower is—no shakes. I can’t listen to weight watching radio ads anymore. I can’t do it. They say lose so many pounds in so many months, I’m like, that’s not healthy. Don’t.
BC: I can’t because, to me, I unhealthily dropped that weight in that amount of time. It was terrifying then, it’s terrifying now. I’ll advocate moderation until probably the day I actually do die.
BC: We did. Mayo was an experience because I actually … this is going to sound really bad, so many doctors you can’t remember everybody’s bloody names.
BC: The thing that I do remember talking with my dad, I was just like, the Mayo Clinic, being up there, it was a mixture between an airplane terminal and a hospital. Me coming from an aviation family, and my dad totally getting it when I said that analogy. I mean, there were patients walking around in gowns and dragging suitcases full of what I got told were their files.
BC: And I’m just baffled because I was just like, “That’s somebody that’s really skinny and looks healthy on the outside.” But I’m just like… So it was kind of an eye opener on that one. As far as being with an oncologist, the Mayo Clinic was probably where I ended up getting all the radiation and chemo treatment.
To be perfectly honest, I think those were hard because you’re doing the six hour drive up. And when you have six month appointments, or three months appointments, weather turns crappy and everything. Not to say the brief stint over in Mayo—but that was probably six or seven months I was there. So we’re talking, it’s turning in January. I took a turn for the worst, locally.
BC: I was trying to because at that time, I mean, I was close to meeting Dr. Goldberg, and the last time I was interviewed, they actually do describe how tired I was, how skinny I was, and how I was basically in a wheelchair because I didn’t have the stamina to really walk.
BC: Like I said, a lot of it seems like it’s fuzzy because it…
BC: And I appreciate it because it’s helping me. I do know that I was advocating that… I wanted to try it. I wanted, if you think that this is a good option, then I was like, “Yes. Please. Let’s let’s do it.”
BC: I believe there were options. But the other options were the less aggressive way to do it.
And what my mindset was, and like I said, my family. And at this point, like my sister was trying to finish up her senior year in college, over at Northwestern and her undergrad.
Fortunately, she didn’t have to do the long hour drives like Mom, Dad, and I did. The conversation, at least for like Dad and I being on. Dad and I were very, very much alike because we’re just like, “No. Let’s hammer at this. Let’s get it done.” And before chemo and radiation, they actually did do the procedure to cut the cancer out, since it was stage 4. That meant that everything has metastasized. So I have a total of… Sorry, I’m going to do a head, toes, knees and shoulders thing.
There was a colon procedure, which was on my stomach, which is greatly different from like the one that… Because my dad actually did have colon cancer. But he got it at stage I, and he was 45 at the time. I mean, my sister and I were like eight and five respectively. We remember it, but we don’t remember that much detail.
But the scar difference, like when I got done with mine was… It was noticeably different. Like how much the procedures had changed since then, which was fascinating.
BC: Yeah. I did.
BC: Smaller scars and what they said… Not that female vanity has much to do with it. But they’re just like… They called it the bikini thing. My belly button is cut. You can still see the scar, and it’s puckered. And then there are three microscopic, like you said, down closer to, not your womb, but a little bit closer to your crotch.
BC: I think that there was a couple times. But I think like… I don’t think I had a problem with, “Can you speak that in plain English, sir?”
BC: I was like, “OK, so what does that mean?”
BC: Because I mean, just a simple heart attack, everybody has like a hard time trying to figure out—it’s a myocardial infarction? Is that what?
BC: I was just like, “OK. Plain and simple terms please.”
BC: They were. I mean, there were some things that were, for the most part, the discussion about your colon. Like this is right here. I was able to see. They would pull up my chart, and all the x-rays, and any of the scans that I did. So I was looking right at my insides and everything.
BC: You can definitely tell when you’re skinny. When you can see the outline, you’re like, “Oh, OK.” So it’s really, I think, fascinating, to be viewing the scans, of just viewing when something is wrong.
I guess I wasn’t too terribly shocked. Full disclosure. Before I went into theater in high school, I was debating on whether I wanted to go into nursing.
I’m horrid at math and at chemistry. And so, I very soon discovered that, that probably was not going to be the wisest choice, because trying to get into a nursing school, and then going through the…So I happily bowed out. But before I did that or officially made theater what I wanted to do, which was, according to my dad… He was just like, “I can see you being much happier when you’re able to do what you love. And instead of staying behind a nurse’s desk regretting the fact of like, oh, could I, would I, should I, kind of thing.” But I’d gone through the certification for a CNA.
Not that you see that many X-rays or whatnot.I had because of my training… I still have my book for all the classes. Like the wound care. I think it was more or less going through that program and knowing that I wasn’t squeamish and whatnot. And my family being so blunt about a lot of topics that are not necessarily taboo. But just people don’t think to talk about them. Or they should be talked about more, frankly.
I guess it was just more or less for me, it was all business. And I’m doing what I need to, to get myself healthy again. So I can go back to changing the world the way I want, more or less.
BC: They did. And that’s probably because fairly early on, I was just like, “OK. We’re just going to take it day by day, and do what I need to and get healthy again.” Early on in the thing, you don’t think about all the stuff that’s going to happen which is the weight loss. You not being able to choke down food, and you being tired, and just not being able to have the stamina. Right there, There’s four things that nobody anticipates. Because I was this young…you’re talking to a 25 year old.
25 is, everybody’s out of college. Everybody’s got a significant other. Everybody’s career is taking off. I kid you not. Actually, the thing that probably hurt more than the surgical procedure to remove the darn cancers, was going up on social media. And mind you, I’ve got a recent gut wound, in which they always say hurts worse than any other type of wound. And it may be just the psychology. But I probably had more regret and hard time coping with the fact that every time it felt like I turned around—I was seeing this from one of my friends. “Oh, look at the ring. Oh, look at this. Oh, look at how my life’s taking off.”
And here I am, having to put my whole life and dreams on pause because of the fact that I got something that I didn’t ask for. Regardless of whether it’s family or not.
So there was a lot of bitterness. There were a lot of… I mean, I will admit there were a lot of phrases I had to tease out of my vocabulary for my family, and for my friends, for all of us to be able to cope.
Over my dead body went out really quick. Need that like a hole in the head went out after they found a pea-sized tumor in my brain. Although I’m really sad I can’t use that anymore. I was thrilled for my classmates. And it’s wonderful to see the success of other people, especially those that you’ve been close to—college, high school friends, or whatnot.
BC: I finally officially got diagnosed, and we started going up to Mayo. I kind of came up with a list of people I was going to call to tell them the news of what was going down.
I called this my top 10 people of who’s going to stand in line to bring Beth back from the dead when they kill her because she didn’t tell us. And I was trying to make it so that I was calling these people or talking to them in person, because the small town that I lived in—I was trying to keep as much of this pot covered and things private because, I mean, like as blunt as my family is, we’re very, very private when it comes to like airing medical stuff, or what we consider dirty laundry.
But I mean the small town, things get out. When people found out that I had cancer, they were just like, “Oh my God. I never would’ve expected it from her, or whatnot.” I remember calling one friend that I’ve had since childhood. And I was like, “Are you sitting down?” Is what I asked her, And she’s like, “Yeah.” And I told her the news. She was like, “OK. Now I need to lie down.” And another friend when I reached him, he actually called me back.
And I found out he was driving a car at the time. And the thing was it’s like when I was in Cincinnati, his dad apparently had some kind of cancer as well. When I was in Cincinnati, I found out that his dad had battled it and kept it secret. And I mean quiet. I mean, the guy was a board member or something out in the community. Or on the local council. I could understand why his dad wouldn’t want that necessarily airing out into the public. But when I found out that he was driving. I was like, “OK dude. Please. Just, if we’re going to talk, please pull over.”
“Please, I don’t want to drop this bombshell on you and while you’re driving.” But those were two instances where it was just like trying to, for us to grasp as a family what was going on, and work through what all the options were. And me trying to tell my friends: It’s like, “Hey, I’m not going to be able to go out as much because of the fact that the chemo’s going to make my immune system really, really wonky.” Like when I say wonky, I mean low. The second anybody found out that they were sneezing, they’re just like, “I don’t want to give Beth a cold.” It’s like a 10 foot pole.
I got it. But you’re talking… This might be a little hitting a little bit too close to home in recent months. But it was pandemic isolation for just one person. I was getting fairly irked and ticked very, very quickly. Which is probably not the best, because something a relative had said actually about my grandmother. They’re like, “You know she’s not feeling well when she’s grouchy, or when she’s mad, because that’s not her personality.” It’s like she’s really in pain, or she’s really, really sick.
I did not like the idea of a new normal. Let’s just put it that way. I realize now that I’m well, and I’ve been in the pandemic. So me just being like, “Yeah. New normal’s not so easy.” I mean, I hate to say I’m playing the world’s tiniest violin for everybody else.
BC: Oh God, yeah. Almost every other sentence was like, “You’re just going to have to adapt. Or this is going to take time.” I’m not the most patient person on the planet. I will straight up admit that. I don’t like feeling the fear of missing out that went for like seeing my friends getting married or stuff like that. But that also happened today.
I felt like, “OK. I’ve gone through all this education. I’m ready to work. I’m ready to start my life. I’m ready to explore the world.” But I don’t know. It felt like you’re given permission to go out and explore the world. And you’re on one of those dog leashes. And then all of a sudden, everybody goes like, “Oh, nevermind.” And you’re like, “Oh.”
BC: It’s hard to say that anybody really, I felt, truly got it. Because one, I didn’t want them to get it. Because if they would’ve gotten it, they would’ve gone through the same hell that I went through. I think it was very telling when I told my parents: “OK. I remember my bullies from elementary school, and from high school, and all that stuff.” I was like, “I would not wish this on them,” was very telling.
Especially when I can say probably a couple dozen cuss words of how to describe some of those people that were bullies.
The fact that I’m just like, “No. I wouldn’t even want somebody who treated me horribly, horribly, wrong to go through this kind of trauma.” Because for the most part, trying to get people to understand, at least my friends. I was like, “My body’s attacking me from the inside.” I was like, “I don’t know how to fight it.”
So everybody’s just like, “Oh, just give it your best fight.” I think I was talking to, be it in theater you cross multiple different disciplines, I happened to in during my college career meet a variety of different stage combat directors.
And so I was asking him: “Hey, what is there something I can do to kind of feel like I’m kind of being physically active or something like that.” And somebody suggested shadow boxing, which I thought was great, because there would be a couple of times I’d just be standing out there, and I’d look at my shadow. And I’m just like, “You going down,” kind of thing. But at the same time, it’s like cancer’s one of those—chemo, radiation, new IV treatment, which came later. All that stuff. You can’t physically pummel cancer. And that’s probably a very difficult thing for a lot of patients to grasp is that they can’t physically beat up the thing that’s causing them harm.
Because otherwise they would be beating up like their colon a couple of times. And I think there was a couple of times I’d be like, “OK. Now you’re going to eat, and you’re going to like it,” kind of thing.
I wanted them to get it. But I also didn’t. There was also kind of like, I felt bad being as blunt as my family is, and me probably being one of the most bluntest in the family.
The neuropathy was a very interesting thing to explain to people because here it would be in like the heat of summer. And I’d be wearing half gloves, and a winter parka, both of which I still have. And have easy access to. But I use them for different reasons. In my living room, drinking luke-warm Sprite.
And the act of drinking that. The act of holding the can, would give me tiny pins and needles even with it being room temperature. The cold ones—I was just like, “No. Don’t touch that because that hurts.” It’s drinking the fluid that you don’t think about. And that feeling, like a pin cushion is going down your throat with the needle still in it.
And my friends going like, “Oh.” And just thinking about that kind of sensation, I felt guilty a little bit just describing it that vividly, even though it was…To me, I was like, OK. You want to know what I’m going through. But at the same time, it’s like I’m kind of clamming up because truthfully, I know that it’s probably best if you don’t.
I mean, it’s like one of those things where it’s like, “Is it going to hurt? Or is it going to help? Or is it going to make them feel better, or no?” I think one of the biggest things that my mom probably had a gripe with, not necessarily with my friends, but when I was really sick and dropped down to the 119 pounds, was people asking whether they could see me. And my mom and I being like, “OK. Do you want to see me just so you can see me before I died? Or do you want to see me to be helpful? Or do you just need closure?”
BC: It was more or less like, I handled it because I was just like, “Well, you kind of now know who your true friends are,” kind of thing. It was a little bit of like,”OK. I’m going to try to forget that you said that. I’m not going to be able to. But I’m going to try and forget that the fact that’s a thing.”
BC: Well, it was more or less—the thing that probably irked me the most is that it’s hard enough to, and I’ve tried to explain this to my sister. I was generally known in high school, and mostly at college, as a quiet person, didn’t really speak my peace until I absolutely thought I was like I had all the information, details. And I actually had something to contribute.
It was being the positive person for everybody else. But when the positive person’s run out of juice—who’s supposed to refill them? That was the biggest gripe that I had. I was like, “I’ve poured so much into our friendships into like being supportive. And you guys can’t bloody give me the hey-ho, hold in there kind of thing?
BC: It feels a little bit like a betrayal of just like, give me a reason to go on. Give me a reason to…And I’m not really entirely sure what day was the freaking turning point of just like… I do remember thinking at one point. I was like, “I’m not bloody done.” I am so ready to freaking fight.
And this is where my sister and I get into arguments. She’s like, “You didn’t see yourself when
you were on drugs and all the IVs are hooked up to you.” And I was like, “I get that.” I was like, “But I was trying very, very freaking hard to be coherent.” And I say that being the PG version.
I got that my friends were scared. But the thing that pissed me off is that the fact that it felt like they didn’t think I was, what wasn’t. I mean, I did not alter anything about my appearance, because I think the biggest example I can give you is my hair. It’s back to normal now.
My hair for a ponytail. That’s how thick my hair is.
BC: It went from that size to…
BC: To thin.I was combing out my hair. I didn’t lose it all in one go. But I just knew the second that I shaved my head, that was going to be over the edge for a lot of people. Because shit becomes way too fucking real. Sorry.
BC: No. I got a wig, but I never ended up using it because I did have enough hair, even with it as thinned out as it was. It’s like…I could still manage to pass something off.
BC: I got why people used it and it just made sense to me, and I didn’t mind using it, because it did feel like I was going to war. The only thing was trying to get myself out of the mental state of no, I’m not physically going to war. I have to psychologically, I think a mantra I kept on telling myself was, mind over matter.
If I think I’m going to be fine, if I keep on saying, “I’m going to pull through this,” then that’s enough to get me over. But that goes back to the whole thing about me being pissed about—I had, she wasn’t a classmate, she was a couple years ahead of me, but she’s a local girl and we chat and I knew her because she was involved in 4H, same as my sister.
But I’ve been told by her and multiple other people, they’re like, you were so focused on getting better. I was pouring everything into myself again. But the problem is, I was doing exactly to myself what I had been doing—when it’s all or nothing for me. That makes me really picky when it comes to, I’m very hesitant to meet new people, or something like that.
Partly because I was a little bit shy, but also I want to know their character before I really invest fully in this thing because once I do… But for me it felt like I was like a pitcher, and I went from pouring, pouring, pouring, I was just like, OK, I’ve got nothing left, who’s going to refill me? Which is not how everybody thinks about battle, but that’s kind of trying to psych yourself up to mentally be in that state all the time.
Because the cancer’s in your body. It’s not like you get to say, “Oh, bye-bye, we’ll see you next week.” When, chemo—No, it’s there constantly. Even when you’re done with chemo, you’re just like, OK, this is where I’m done with chemo, I need to lay in bed, and I need to sleep.
I mean my mom was—if I said that I wanted to see somebody or have somebody come over, she would make me nap the whole day before so that I would have energy to visit with them. But the thing was, a lot of the times it didn’t quite work because I’m one of those people where I get excited to see them. The rest wasn’t exactly coming, so I had to get myself in the zone, and it was like, OK, I’m just going to rest.
A lot of on-the-mattress savasana, more or less. Which also is another reason why—morbid personality that I am—I completely understand why they call it “corpse pose” now. I completely get it. But I mean at the same time, that’s not something you share with family or friends when you’re fighting for your life.
BC: They learned very quickly that I am very snarky and I’m very much a smart ass.
Which a lot of my friends already knew from the bat. There was one time I was hanging out with a couple of friends from high school, and somebody asked me that and I made a remark, and they’re like, “Yep, she’s fine. She’s doing OK this week.”
The medical team really appreciated me being the morbid, smart alecky, sassy, redhead that came in. That also, “Hey, I was really happy to see you earlier. I wish I didn’t have to, but I’m really happy to see you. I’m glad that you’re taking care of me.” Which is still a running joke that I have with the ladies over at the labs over in Ohio when I have to go back there. “Oh, what’s changed this week? What was the last time I saw you?”
BC: To be fair, I also really looked forward to the couple of times that I could spontaneously give them something. I believe there was one Halloween where I was due to get my MRI, CT scans. And I have a space suit, my sister and I went to space camp when we were younger. Being 5’11”, I apparently shot up as a bean as a kid, but that was when I tapped out at 14, 15.
The space suit still fits me. Me being the smarty alecky person that I am at age 27, 26, give or take, I walk into the MRI thing with this jumpsuit. I mean, everything else, underwear, t-shirt, tank underneath it. I was just like, everything. I’m not wearing a bra, basically suit me up. So I had the nurses take a picture as like I was going into a space capsule right before.
BC: I think the nurses got really quickly that if anybody’s going to poke fun at the fact that I have to go through all of this, for lack of a better word, crap. I was at least going to try and make it so that I felt like I could endure it and also, kind of relieve a little bit of the tension that was in the room because there were a couple times where I was like, “God, man, we could cut this thing with a freaking knife if we wanted to.”
And one thing I also did learn during this whole process is not so much with the doctors and nurses, but definitely with family and friends, is we have such a hard time with eye contact as a society and human race thing.
I think it was very, very hard for my friends to look me in the eye, because I think they could see the pain that I was in and I could see how much pain—trying to cope with like, “Are we going to lose her?” Or whatnot, going through their eyes. It was a lot on both of our ends. So it’s just kind of trying to navigate that.
And I will say every person who has had cancer is different. I haven’t done a show with her recently, but there’s another girl in Rockford, she got diagnosed with, I believe it’s some kind of blood cancer.
She went through, not same fight as I did, but like she went through the chemo and all that other stuff. So we’ve commiserated on that, but she handled her cancer story a lot different. Whereas, with mine I was like, the top’s over the pot, unless I bring it up or my family, we’re kind of just going to keep this about low key so we can try to keep about as close to our regular normal as we can. Whereas, with her she was detailing her cancer journey. She made it public. I don’t have that kind of guts. Interviews is one thing. Being out there on social media with a shaved head or weight loss, I feel like—
BC: It’s not for everyone. And also it’s not for everybody’s family either, because I think my sister would not have coped with that well at all, or my parents. I’m kind of semi-grateful, because she is younger than me. I’m kind of grateful that I didn’t think to do that, and also my family is enough of a moving one, before cancer and everything like that, there was constant clockwork of everybody knew whose schedule, but it’d be like, “OK, we’ll meet up here,” kind of thing.
BC: Ironically, no, I don’t. Outside of the one person that I personally knew, and I knew her before Facebook, I really don’t know that many people who are my age who have cancer. And it seems if I hear about them, they’re either across the country, and not on the same time zone or whatnot—or I won’t say that I’m hearing a lot about people my age getting diagnosed, but, there will be a family member that’ll approach my mom and they’ll be like, “Hey, I just learned that so-and-so in my family got cancer diagnosis,” or something like that. “Could you give us the information that your daughter?” So it’s more or less, I’m a known enough entity that I guess I’m utilized, which is fine. I’d rather be helpful. But I don’t think I’ve had somebody to talk with, commiserate, really, on that, which is fine.
Half of my time getting my master’s, which happened when I finally felt well enough—a large part of the conversation that I had with our advisors of the program. I was like, “How do I explain this five year gap that I have, with limited experience of learning anything?” Which, mind you, my sister was like, “Well there’s people your age who have had,” I was like, yes, but they’re all like mothers who have children old enough that they can go back to work. It’s a little bit different. I get that the time span is not different, but the scenario is different.
BC: January of 2015, I had another scare, and the doctors and nurses there had told my parents that they basically gave me six weeks to live.
BC: Yeah, I was pretty much in the room. I vaguely remember that.
It’s fuzzy, I got it. And it’s shortly after we came back from that local hospital visit, we were due to go back up to Mayo one more time—and it’s January so it’s a freaking bloody blizzard.
And my birthday’s in February, so it’s like every year I can count on a blizzard. But I remember, and my mom could probably tell me more of the stuff that I wasn’t privy to that her and dad had a discussion.
But I do remember I was back up in my room, just kind of trying to get relaxed and get situated again, and my dad came up and sat on my window sill or my window seat, and he was like, “Do you want to try and go back up to Mayo or do you not feel like you want to?” And I told him that I wanted to. I think I remember, there was so—I remember feeling like— I could tell that dad was trying really hard to keep it together.
And I just wanted to reassure him that I wanted to try and do everything I could. I wasn’t going to stop. Mind you, I didn’t want us to get into a snow ice pile-up kind of accident. But at the same time, I knew my parents’ driving capability and all that stuff.
Ironically enough, that last trip to up to Mayo, the doctor we were seeing had a colleague, and he was just like, “Hey, my colleague is over at Ohio State, and they’re part of a study that’s for this new immunotherapy drug. And they’re trying to try it out on a couple of the cancers. It’s mostly been used for lung cancer,’” It’s since known as Keytruda, ironically enough. But they were like, “We could try to get her into this program. See if it works.”
BC: Yeah, because the genetic mutation that my family, it’s Lynch syndrome, which has been, I know we haven’t touched on that, but that was the huge thing about the family colon hereditary thing. We knew what it was and that it was a genetic mutation, but they were like, “Oh, well there’s these new studies coming out that these drugs will work with your genetic mutation that causes your cancer in order to fight against it.” And I was like, “Yeah, let’s give it a go.”
BC: I heard of them, but I hadn’t been involved in any, obviously prior, like you do a survey kind of thing. It’s more like those mental health kind of surveys. You turned it in, and you never hear anything about it. Thankfully, high school biology teaches you enough about not placebos, or that may have been a little bit of like the CNA training, but high school genetics classes. OK, I got this genetic mutation, they say they could work with this thing, so obviously there’s some kind of science working. And I was like, even if I get a placebo, at least like I’ll be—my dad did not want me to get the placebo.
He wanted to make sure that I got the drug, which I was completely fine with as well because, if I’ve got the mutation, yes, of course I want to see whether it actually works and I don’t want to get a fake pill to see whether it doesn’t.
We met Dr. Goldberg—it was probably February when he first met me, maybe around March, something like that. I mean I’d barely gotten how tired and skinny and lethargic that I was when we went to the thing. And he quite literally in the span of the time that he knew me and they got me on the drug and all that stuff, his words in the previous article that the cancer letter did was the Lazarus Effect, which, I mean, being the Catholic school girl that I am I was like, wow, that seems a bit drastic, but then again, I mean I’m also seeing it from my point of view. I’m not seeing it from like my mom’s or the doctors.
BC: The consenting for it was kind of a little bit of a no brainer. I wanted to give anything that I could possibly put at ease of like, yes, I want to keep on trying. The paperwork, I hate to say it, most of that. I feel so bad for the coordinators and our coordinator. I ended up getting a really good rapport with her, because she was a fantastic lady.
The only thing is because of the trial being from Johns Hopkins and all that stuff, you have to be really specific in your paperwork and all that stuff, so that was all on her. But I mean also, it kind of made it a little bit of a tense week because we were like—Yeah, we need to wait for the official all sure.
BC: I’m not entirely sure to be perfectly honest. I would almost say no. Because I was probably one of the patients that it happened the quickest, the quickest response. I know I wasn’t the only patient that was on it, because the side effects paperwork that they had assigned every time we came in, generally got longer with my own.
BC: I mean there was your standard, you were tired or, I don’t know. I can’t even remember what all the side effects were, but I think I know that we were talking about aching, or something like that, but I was just like—I get that with chemo.
I can’t tell whether this is the drug, or whatnot. And eventually maybe a year or something like that, they had already taken my tumor out, but they couldn’t see any evidence of anything else.
BC: Probably April or May.
BC: It was rather drastic. I mean, for Dr. Goldberg to see me, when I first walked in, I didn’t even walk into his office. It was like, I rolled into his office with my family, because I had my crutches and I was in a wheelchair. I was tired. I couldn’t really hold my head up as much as I was trying. Posture is not a forte when you’re sick. And the thing was I couldn’t understand why—because for me it was a mixture of, OK, I can tell something’s happening. I can tell it’s having an effect. And even for me, it felt like it was too slow.
BC: I don’t know. I don’t want to necessarily say my mood was improving, but it was more or less the numbers, the blood counts and all the blood draws. I remember the one time I didn’t end up going into the lab by myself and gain all my blood drawn.
They didn’t get to me in time. It would be before I went upstairs with my family, and they brought the tubes and they’re drawing my blood in front of my dad. And my dad completely freaked out because he seen these huge tubes of five or six—or I think there was a max of 10 tubes at one time and he is just like, “Oh my God, you need that much blood?” The nurse was like, “It’s OK. We’re probably only taking about a teaspoon each for each vial. It’s OK.”
And for me, even before working with the ladies in the lab, I had donated blood when I was in high school and probably a very—I’m not sure why this didn’t smack at me earlier, but when I was an undergrad in college, downtown Chicago, they actually flagged me for my hemoglobin, for my iron.
Which I was like, OK. My one grandfather is anemic, so that makes sense that I am and the theater hustle, no big deal. And I mean everybody’s bad at their vegetables. I mean, lettuce is not —as much as it is fortified with iron, it doesn’t do too much to really make the pallets elevate or anything like that. So I would try every once in a while, but I wouldn’t get very far. The nurses got really used to me in the lab just being like, “Which one do you want? I know they both work.”
BC: Like I said, you’re already finding out the snappy sassy comebacks was a thing.
BC: Blood counts were getting better. And I’m still fighting a little bit with my iron, and I think it’s just because I was always on the low side, I said prior to any of this, years and years ago, I’d been flagged for hemoglobin and all that stuff. But, I think for the most part, all my numbers were bouncing. And the doctors had now known me long enough. They’re just like, she’s low, but that’s normal for her. We don’t know how it’s normal for her.
BC: April-May, I actually kind of started getting antsy again. I was like, OK, I’m walking around. I’m feeling well enough. Most of my scars had healed. When they took out the colon tumor, as I said, if things had metastasized—there was also a nice lemon-sized tumor on my kneecap that they took out. So I have a lovely scar that, I’m not quite sure whether there was any way that they could’ve laparoscopic the crap out of that or anyway, but now I’ve got a very impressive scar that just looks like I am some kind of biker, rock climbing enthusiast that got something really wrong.I was just like, I’m feeling well. I’m going through physical therapy to try and get the mobility back in my legs.
I still can’t kneel comfortably, but I do have my range of motion back. I just can’t do it for a long period of time. Then I’ll go sliding into mermaid and look all cute, all that stuff. Yoga kneeling is kind of a little out of the question, but I started looking into doing volunteer community theater again. So the first show that I did was “Fiddler,” no, “Babes in Toyland.” And that was cool, I didn’t mind doing it. I actually loved it because I was working with a ton of kids. I found out very quickly that I still had a very low tolerance for 15 plus kids who were just sugared up on something.
And there was one instance, me and the other girl, she was playing Mary Contrary and all of the community theater, there’s people in charge, but they’re all the adults, and the adults need to talk at some point. So we’re all at the community building where we’re going to hold this thing, and I don’t know who, but it was going to be a late rehearsal and somebody had brought cookies, and I’m just seeing these kids’ eyes go really wide—
BC: And I’m thinking, OK, “We’re going to nip this in the bud before we even get there.” So I just shouted at the projected top of my lungs. I was like “OK, kiddos, we’re just going to go sit in the bleachers until the adults tell us that they need us. And right now, we’re going to head over there.”
And so we all start trucking over there, and the kid who was playing Little Boy Blue said, “Yes, ma’am, this ballerina,” which I thought was hilarious. And all the kids were trotting off, and the girl who was Mary Miss Contrary sidled up to me. She was like, “Ballerina got backbone.” And I was like, “Ballerina’s got tired of dealing with chaos when she doesn’t need to.”
BC: No, not unless I told them. And a lot of the times, the first person I usually approached with any issues was usually the director or a choreographer. And a lot of times, that was one and the same, at least for the first show with “Babes In Toyland.” I was just like, I want to see whether I can still do anything. I’m tired of sitting down. And when I left high school, and even when I left college, I went into a career that I didn’t want to be sitting at a cubicle—was not my indication of where I was going to be heading with my life.
BC: That’s since changed a little bit of my tune with going into arts administration and whatnot, but I still feel like there’s enough legwork there that you’re kind of on the go. I was just used to being active and being part of production, so I was just like, I need to do something that, to me, is normal.
BC: Well, we finally reached the six month graduation point. I was just like, hallelujah. That was the biggest thing, when I reached the six month. But the problem with that was, around the six month time, my life didn’t take a turn cancer-wise with that one—It ended up taking the after effects kind of cancer, tragic route.
And I say that because I do think the, not healthcare providers, but the family, specifically the caregiver, really needs to be shined a light on, for history as well, because I finished up “Babes In Toyland,” and I was like, “OK, so I know that I’m capable of doing a kids’ show.” I was like, “I want to do something that is a little bit more my age category.” .
I’ve been known to bounce back and forth. You live this close to Wisconsin, you tend to kind of have feet on both ends of the state line. This was relatively new to me, but I’d heard a lot about their reputation, and I was like, “OK.” They were doing “Fiddler On The Roof,” and I auditioned and I got into the ensemble, which was really wonderful.
And that was January of 2016. And the play went fine. It was only the summer of June, 2016. So I’d done “Fiddler,” and I was starting to go back into Rockford and investigate doing shows. And I got talked into… And I don’t say talked to, I mean, obviously somebody twisted my arm very, very hard, relatively. I had no idea what the show was about, but you brought this up, which is, “Assassins.”
I was in a show. They were a group of theater friends that I had known. They had started their own theater company known as The Usual Suspects, and this was probably their third season. The other two seasons, they had done something during Halloween, which was “Rocky Horror,” for the last two years.
And this was them kind of branching out from just being known as “Rocky Horror” to something a little bit more, not necessarily edgy, but just a little bit outside of the norm of what you would usually pick for a musical. They ended up doing “Hair” and “Urinetown” in the years after.
Back to “Assassins.” I’m in the ensemble for this and I’m with my friends. And my dad had seen the show, but it’s a beautiful summer, June day, and I come down to breakfast. I woke up this morning, my dad was out mowing, and he comes in and he’s like, “I’m not feeling so good.” And my mom and I are just like, “OK.” Finally, he’s like, “I need you to take me to the ER.”
He ended up dying of a heart attack that day. And the thing that’s a little bit difficult is that I’m happy that he knew that I was on the up and up. Like I said, I was graduated from three months to six months for appointments.
He knew I was actively trying to do what I loved and get back to normal. None of us were ready for that. My sister was in New York, and she—my mom. There had been only been two times, really this entire process, where I had major survivor’s guilt, and one of them happened six months after I got diagnosed, as my mom’s friend who was a flight attendant got diagnosed with lung cancer.
And she passed away, leaving two daughters who—one was just graduating high school and going on to college, and the other one was just getting out of middle school. I’m actually wearing the gift that she gave me.
BC: As much pain as I felt for TJ’s daughters, because the thing was, TJ and I had had conversations when she was bedridden and she had decided to be at home. And I went to go visit her, and she was talking about the treatment and the pain she was in, and then talking about morphine and all that stuff. And I was just like, “I’m sorry, I know you’re in a lot of pain, and I really don’t know how to,”—She’s like, “I know you do.” This is what I mean, talking about, I want my friends to get it, but I don’t, because that was the hardest thing of just both of us knowing that each of us felt that pain, and had felt that just wanting to have it in…
I mean, because TJ was positive and sure she was going to kick it up until the very end, and I just felt so guilty about the fact that I couldn’t tell whether it was me being young, me being… the mutation, whether it was the kind of cancer. I just didn’t know.
I just saw it as really, really unfair. And then when my dad died—I have been told for colon cancer patients, usually your heart—most of those people have some kind of heart problem that they’re dealing with after, or it’s a heart attack. And my dad did have colon cancer stage one, as I said before, but the level of guilt I felt on the stress that I had brought on my family and pulling them through hell. I think my sister actually had to talk me down. I’m just like, “I killed dad,” kind of thing.
BC: Well, luckily I did reach out to somebody during the pandemic, and it was somebody that we had actually gotten in touch with when I first got diagnosed. Because when I was on my lowest, people were… And I get it. I wasn’t happy about it. Again, I was very much the snarky—they had me talk to a counselor to try and grasp that there was a possibility that I might not survive.
That was the whole reason that I met the counselor lady that I talked to. And I have talked to her, and she’s been really wonderful, because there is some complex dynamics with any family.
With my dad’s passing, he was the oldest out of his siblings. I happen to be the oldest out of the pair of my sister and I, and my grandmother just happened to be the oldest out of the four of her siblings, and she was the only girl. And my mom’s the youngest out of four, and my sister’s the youngest. So they feel like there’s a little bit of understanding there.
I did end up kind of relating to my dad a little bit more because a lot of our interests were the same. He really enjoyed history. He had been involved in choir and in drama club when he was in high school. He didn’t pursue it because he already had found his love with aviation. That was something he did. My mom’s history and what she did in high school, I could never feel like I got a grasp on.
And I couldn’t tell whether that was just because she had so many siblings and nobody paid attention to what she was doing. I know she was on the swim team, I know people say that she was involved in multiple clubs, but as to what those clubs were and who she hung out with, I have no bloody clue. Also the fact that almost everybody that had met me—we live close enough to my mom’s hometown of Belvidere, with Rockford being close to it as well.
BC: You know exactly what it is. But growing up, anytime somebody that knew my mom or my grandmother would see me and my mom, they’re like, “Oh, she looks just like you.” Nowadays, I don’t mind it. Being an adult, I’m just like, “Yeah, I do look like her, because your kids grow up and they tend to look like you.” It’s all that stuff.
The absolutely hilarious thing, I have a classmate whose dad was actually part of my uncle’s class. And so he has the same yearbook that my mom does. So my friend, who is a guy, was flipping through his dad’s old yearbook and he just happens to land on the page. And he is looking at it, and he’s just like “This lady kind of looks like that.” And his dad peeks over his shoulder and he is like, “That’s because it’s her mom.”
I think, the transition, and I still feel like I’m trying to get out of the lump of “OK, I’m well enough with the cancer. Cancer has been taken care of. Now, I just need to get out of the rut and to be able to live my life.” And I’m sorry if that’s—more or less, this is where the trajectory has been going, as I get done with…
The drug worked, and I am trying to get my life back on track with everything else that apparently has been thrown at [me], which has more or less affected my entire family because of the loss of a parent, but then also me trying to dive back into theater on a production level.
I ended up stage managing a couple of times because I was just like—A friend became the managing director over at Starlight. And I knew with him taking over, that there was a potential that there was an opening to be a stage manager. I was just like, “I know you already have a person that was over from the last leader.” But I was just like, “Is there any way that I could help out or whatnot? I know so-and-so is not coming back.” And he was like, “Well, I was really hoping to get a team.” And I was just like, “Yeah, sign me up.” I wanted to help.
And then I did that for 2017 and 2018. And I think it was like 2018. It’s not that I didn’t love my theater group, but I was just like, “You know what? I feel like if I’m going to do this, I would like to get paid.” Because up until then, everything had been volunteered. Everything had been my own time.
I started looking around and I started looking at grad programs, which for my high school, past self, I wouldn’t have even thought that possible. I’m just like, I don’t even know. I applied to this one program at Northwestern, which seemed like it was absolutely a perfect fit, and got in. I was really excited, but then at the same time, I remember telling my friend, “Hey, I got into grad school.” He was like, “Congrats, that’s great.” I was just like, “This does mean that I’m not going to be able to come back and help you.”
I mean, he understood that I was trying not to spin my wheels, which I’d been doing for the last five years at that point, so just trying to get it. And then, ironically, everything after that lines up to the present day. I managed to get through my degree in person, before the pandemic hit.
BC: But the problem was, I was still job searching when the pandemic hit, so there was quite a bit of cussing on that end of the spectrum as well, so more or less. My little sister’s in New York, listening to me on her phone calls, and my heart’s breaking because my sister just can’t seem to catch a break.
BC: For the future? I mean, I feel like that’s about the same as everybody else, where it’s like we have no freaking clue with the state of the world as it is now. However, I am hoping to be optimistic, and I’m still applying for jobs in arts administration. I feel like with my background, I came from a very small high school and I get the whole need for funds, especially when it comes to nonprofits, so I’m going to continue to do that.
But at the same time, it’s also kind of really nice that we’ve at least gotten to a point in the pandemic where we’re all vaccinated.
After a couple of arguments with my mother, because she had just turned 65, for her, who was going to get the shot first, because it was a matter of, if mom could have had her druthers, she probably would’ve shoved me in front of her. But my sister and I were just like, “I’ll get it when I get it. You raised me not to butt in line.” And also, I know she really didn’t appreciate this, age before beauty, kind of thing.
I mean, my mom is gorgeous for her age, but it was just more or less… and our birthdays are a week apart. That was also the biggest gripe, is the fact that you know that I’m going to get it. I’m sorry, I can’t help that I was born a week after your birthday, and that you’re eligible right now. I ended up appeasing her in the way that I went with her when she got it. And then I was just in it, and they had—because they didn’t want to lose anything if they had unpackaged a batch. So I ended up getting a leftover batch for mine.
BC: I did get it, but it was more or less—I had no problem waiting around, because a lot of this whole experience has been hurry up, and wait. And I was like, “I’ll hurry up and wait. If it’ll make you feel better, I will hurry up and wait and make sure that I get one of those leftover. If they happen to open a box and they absolutely…” Because it was the whole temperature thing.
BC: And I was a big, huge advocate of people, please get it, because there are people who are… I mean, I’m probably much better than I was when I was on chemo, but I’m still considered immunocompromised. And that’s the other thing that I’m just trying to come to terms with, and this comes with job applications or just in general, is like, I now have to think of myself as, I’m healthy, but I have to consider the fact that my body’s not how it is internally as it should have been probably.
So the immunocompromised, on job applications, I have to say, yes, I do have a history of disorder, because cancer’s listed as one of those things. Which if that brings more awareness to the fact that cancer’s becoming younger in people, then I’m all for it.
Probably the biggest thing I’ll say out of this whole experience is that, and I was talking with my sister about having our chat, and I was like, “Probably the biggest thing I’m going to advocate is that…” The recommendation for colon cancer checkups is still way too freaking high age-wise.
It needs to be knocked down a couple of pegs so me and Chad Boseman, who was Black Panther, are on the same page, and we don’t lose that.
Because one of the things I did learn through this entire process is that there are two ways that people view cancer. There’s either the childhood cancer, which is the infants to 18, and then there’s the 85 to 100 geriatric one. And nobody considers the 18 to 36 bracket, more or less. We’re just like the forgotten zone.
Which, like I said, this is where the CDC’s responsibility to knock it down a couple pegs for the rest of us to join in would be great.
BC: Oh, good.