Recovery: Stories about responding to crises

This week, we're esenting stories about the ways we respond and recover to dire situations in science, whether it's cancer or sexual assault.

Part 1: Biochemist Melanie McConnell encounters unexpected resistance when she tests an experimental cancer treatment.

Melanie McConnell has a life-long interest in cancer cell biology. She has studied pediatric, brain, breast, and skin cancers, all to better understand the intricate process of gene regulation. After establishing the Cancer Stem Cell programme at the Malaghan Institute of Medical Research, she joined the School of Biological Sciences at Victoria University of Wellington. Her research is aimed at reducing relapse and improving to life-saving cancer therapies by understanding how cancer cells survive chemotherapy, immunotherapy, and radiation treatment. She’s currently focused on the role of mitochondria in therapy resistance. In her real life, she is married to Richard, is mum to two girls, and spends her time with them and the dog, making compost and tending to the weeds in her vege garden.

Part 2: Actor and rape survivor Mo Culberson helps train doctors to treat other rape survivors.

Mauree "Mo" Culberson loved physics and chemistry when she was younger. While helping her physics teacher hang lights for the theater department a spotlight hit her on a dark stage and she's been performing ever since. Mauree is a writer, storyteller, and performer. She earned her degree in Theatrical Design and Technology and English from the University of Mississippi. Mauree has written for The Atlanta Fringe Festival, the Working Title Playwrights 24 Hour Play Festival and Emory University’s Brave New Works. She has shown her skills as a puppeteer, actor, comic, and improviser in Atlanta. The interaction of art and science continues to be her muse.

 

Episode Transcript

Part 1: Melanie McConnell

So I’m at a cancer research conference.  It’s a pretty standard conference.  It’s a hotel room.  The curtains are pulled so that you can’t see the beautiful day outside. 

We’re all sitting on uncomfortable chairs.  We've been out to get our coffee and we’re coming back with our coffees, and I notice that the room is filling up.  There's a lot more people at this session than had been at the previous session, and that’s great because my research is being presented in this session.  I must be famous because people are coming to hear what my team is saying. 

I notice that the people coming into the room are wearing suits.  They're mostly middle-aged and older men and they're all wearing suits, so they're not scientists.  I thought, Oh, the doctors are here. 

We sit down and my team member she stands up and she says, “I'd really like to thank the organizers for the opportunity to talk to you today.  We’re going to talk about the work we've been doing on the role that high-dose Vitamin C might affect cancer therapy.” 

At this stage, I kind of turned and I glanced at the doctors and there was this row of grim, stony-faced, antagonistic people just bristling at her, and my heart just sank.  What an audience is that if you want to be famous? 

But I guess, to be honest, I wasn’t surprised at that reaction.  So if we go back a couple of years, my research group has been focused for a number of years now on trying to understand why cancer cells, especially brain cancer cells, don’t die when you hurt them.  You can give them chemo, you can give them radiation, they do not fall over.  If we could understand why that happened then we can design some tricks to pull the rug out from under them and then we can make life better for people with cancer and for their families. 

So I was in my office one day and my colleague, I’m going to call her Dr. P.  Some of you might know her.  She came in and she said to me, “What do you know about Vitamin C?” 

And I said, “Oh, scurvy,” because I’m kind of a smart aleck. 

She said, “No.  Vitamin C for cancer.” 

And I said, “For cancer?  Huh?” 

It turns out a really good friend of hers had been diagnosed with a really nasty cancer and conventional medicine couldn’t offer him anything.  So he had decided he was going to investigate some of the alternative therapies and he wanted to use an infusion of high-dose Vitamin C.  So we decided to figure out would that be any good. 

Now, I’m an open-minded person.  I’m happy with the idea that some of these alternative and these complementary therapies may have some mechanistic basis through which they might actually work.  That’s an entirely possible thing in my universe. 

Acupuncture is a really good example.  Acupuncture has been tested for a whole bunch of things and sometimes it works.  And we’re building a body of evidence that looks at the biomechanical effect of sticking a needle in and twisting it and we can see that that changes the way the cells and the tissues react and interact with each other so we can start to see how acupuncture is working. 

Then there's things like Rescue Remedy.  I love Rescue Remedy.  I don't know if it’s the flower essences or it’s the brandy that you infuse the flowers in, or maybe it’s just the placebo effect.  But I really like Rescue Remedy.  I should probably have had some.  I’m kind of whooh. 

I know that that puts me at odds with very many of my medical and my biomedical colleagues who would call acupuncture quackery and we’re not even going to go with the flower essences with many of my colleagues. 

So we start to find out about high-dose Vitamin C and cancer.  And so where do you start?  You ask Google. 

Google is great.  So what Google told us was that Vitamin C can cure cancer and it can cure influenza and it can cure Ebola.  And the only reason that we have disease in our society is that conventional medicine refuses to believe in Vitamin C.  And there's no intellectual property, so no big drug company will make money from Vitamin C.  If it wasn’t for those two things, the whole world would be a beautiful place. We also learnt that you pay about a hundred and fifty to three hundred dollars for every infusion of Vitamin C, that the doses and the timing seem completely arbitrary, and it seems to work really well when you combine it with a caffeine enema or maybe ozone therapy.  And if Gwyneth Paltrow had been a GOOPist then, maybe jade eggs.  I mean, we just don’t know.  I’m open-minded, but I’m not that open-minded. 

So we combed through the scientific literature and we found a little bit of evidence out there.  and we talked to Dr. P’s friend and he made the decision that was right for him.  He decided to spend the money and try this high-dose Vitamin C. 

Melanie McConnell tells her story at Meow in Wellington, New Zealand. Photo by Gerry le Roux.

Melanie McConnell tells her story at Meow in Wellington, New Zealand. Photo by Gerry le Roux.

But what I saw really intrigued me because I’m really interested in radiation.  The reason I like radiation is that when you treat someone with radiation you can direct a beam of radiation just exactly at the tumor and you limit the damage to the surrounding cells.  That makes it a really powerful technique because you can avoid a lot of that damage that you get with things like chemotherapy. 

And what we saw is that, sometimes, high-dose Vitamin C can be converted in the body to hydrogen peroxide.  Now, anyone who’s tried to bleach their own hair with hydrogen peroxide can tell you… it was the ‘80s.  We all tried it.  It’s a biologically active molecule.  If you can get --and this is a big “if” -- If you can get that hydrogen peroxide into the cancer cells and then you hit them with radiation, the damage of those two combined could completely obliterate those cancer cells – in theory. 

Now, this was really cool because this was potentially… and that’s a big potential, but it was potentially a way that we could cheaply and easily sensitize someone’s tumor to radiation.  That would be amazing if that was the case.  So we decided to do the experiments and find out. 

Now, it takes a while to build up the evidence base and we persevered away for months.  Finally, we had some data and the data backed up this idea that, yes, we could take brain cancer cells in a dish, we could give them high-dose Vitamin C, turn it into peroxide, hit them with radiation, kaboom.  We really killed these brain cancer cells. 

We were pretty excited. We thought the science was good.  We wrote up the paper.  We sent it off for publication.  Our institutions made a press release.  That press release must have landed in a very slow news cycle because it got picked up all over the world and they overstated what we had said.  This is where things got really, really complicated for us. 

At this stage, I should say that some people have been very supportive and some funders have been supportive and we’re really grateful to them for that, but not everybody has supported this research.  So the quack-busting science bloggers got involved. 

So we were adding to the hysteria around Vitamin C and cancer while, at the same time, inducing a collective yawn in the scientific community.  I’m not going to Google my own work again.  That was really traumatic. 

Our interactions with our oncology colleagues changed. They thought we’d gone completely mad.  We joined this lunatic fringe of the Vitamin C purveyors.  They could see no reason why this should work and they just hated what we were doing.  They wanted nothing to do with it. 

We talked to the alternative medicine community and they hated what we were doing.  We tried to find out their data.  I’m data-driven.  We tried to find out about the doses and the timing and how they were using it and what the outcomes were for their patients.  They wanted nothing to do with us.  As far as they were concerned, we were science establishment anti-Vitamin C and we were just out there to take them down.  They refused to have anything to do with us. 

So that’s three hits: science, medicine, alternative medicine. 

The public loved it. I would regularly get phone calls from someone with cancer or from a family member and they would say to me, “I've got this cancer and I've got this diagnosis and I’m having these drugs and I want to take Vitamin C.  What do you think I should do?” 

And then they would say, “My oncologist thinks it’s a really terrible idea.  What do you think?” 

I would really patiently explain that we don’t have the data for me to make any kind of decision and I’m not going to second-guess their oncologist.  Anyway, I think the reaction of those doctors at that conference was starting to make a lot of sense. 

So it was really, really hard, though, when a friend called me, a friend I hadn’t spoken to for years.  A phone call out of the blue from an old friend, that should be a time of joy.  You should have some moment of excitement in talking to them.  But when they're reaching out to you because they have no hope and they just want something, they just want anything, and you have nothing that you can give them, that’s not joyful.  That was just heart wrenching. 

So it was the saddest, most frustrating, most infuriating experience of my life.  All we wanted to do was test and see does this therapy do anything.  It’s very expensive.  It could be good.  It could be bad.  It might be completely useless.  We don’t know.  And we were being blocked by all these people who had this bias and they couldn’t see past their bias to that really obvious question. 

I kind of felt like we were standing there in the middle of this battlefield, kind of a no-man’s land and we’re taking these hits from all sides.  I thought of Wonder Woman in that latest movie, which was cool, but I’m not Wonder Woman.  I don't have super powers.  I can’t bound through and fight off these bullets. 

So we went back to the lab.  We hunkered down and we did some more experiments.  And we learnt a whole lot more about how radiation and Vitamin C would go together.  Then we made a strategic retreat. 

We said, “Enough.  We don’t have an answer.  There is going to be no simple answer for this problem.” 

Dr. P’s friend did really, really well.  He lived much longer than we anticipated, than anyone expected.  Was that the Vitamin C?  I don't know.  We don’t have the evidence to do that. 

So I know in my brain, I know that being glared at by a row of doctors is not the worst thing in the world.  I can see that.  But it really hurts.  It hurts to have your reputation and your work laughed at. 

We had one person in New Zealand who told everyone our work was a complete load of rubbish while my colleague was sitting in the room at the same time.  It’s a difficult place to be. 

But we hit this bias and that bias is a really fundamental part of human nature.  I think what I've learnt is that while it would be great to be Wonder Woman, that Lasso of Truth could be really useful to get people to confront their biases, I think the only tool that we have is that of science.  So while I would love the wrist bands and that lasso, I think I’m stuck with good science.  We need evidence, we need an open mind, and you need a really, really thick skin. 

Thank you. 

Part 2: Mo Culberson

So I am sitting in a chair and I’m wearing a summer dress.  I don't have a bra on.  I’m just sitting there on my summer dress and I’m fidgeting and I’m shaking.  I’m trying my absolute best, but when the healthcare workers walk into this doctor’s office that I’m sitting in, I do everything possible except for make direct eye contact with them. 

Now, I am shaking.  The doctor has a clipboard and he's asking me questions about my story.  He's trying to get my story out of me and I cry at some point.  He reaches out to touch me and I jerk back a couple of feet. 

So I’m sitting there in this chair and he's asking me all these different questions.  He seems nervous to me as well, but he's making it through it.  He's kind of mumbling his words and kind of stammering over some of them, but that’s because I’m telling him my story of sexual assault. 

Mauree "Mo" Culberson shares her story at the Highland Inn Ballroom in Atlanta in October 2017. Photo by Rob Felt.

Mauree "Mo" Culberson shares her story at the Highland Inn Ballroom in Atlanta in October 2017. Photo by Rob Felt.

Now, all of a sudden he asked me to stand on this sheet.  I stand on the sheet and a nurse holds up a sheet for my modesty and I have to take off all of my clothes.  As I’m taking of all of my different clothes, my shoes, my panties, my dress, different parts are being placed into bags and then sealed and then handled very carefully with gloved hands.  Then they hand me their hospital gown and I've got to put the hospital gown on behind the sheet. 

Then I put the hospital gown on and I’m still a little shaky.  Finally, they ask me to sit on the exam table.  And I sit on the exam table and I start to breathe a sigh of relief.  That sigh of relief is very important because I now get to be, instead of the actress that I am as the raped character that they have just interviewed, I get to be Mo.  The me in me.

I work as a standardized patient. If you don’t know what a standardized patient is that is people who pretend to be sick, crazy, whatever, for doctors-in-training. 

So I’m on the exam table and I’m sitting there finally kind of relaxing because I get to be more of the me in me, because the story part is over. However, the me in me is actually a sexual assault victim -- survivor, I think, is what you're supposed to call it now.  I will tell you, back when this happened to me, I had absolutely no chance at justice.  And I definitely remember them telling me my character searched for her cell phone.  When this happened to me, I hadn’t even seen a cell phone in real life yet so I didn’t even know what they looked like.  But I will tell you, she definitely had a better chance at justice than I did. 

I remember being very scared and running through a forest and getting all scratched up and hearing cars and being like, “That’s gotta be a street or highway,” and running towards it.  I got really lucky because, when I’m stumbling through this forest at nighttime, a police cop cruiser friend of mine just happened to come by and he, thankfully, let me fall into the back of his police cruiser and bleed and cry while he drove me back to campus.  Now, we had a moment because he did ask me if I wanted to go to a hospital and report it.  I definitely didn’t report what happened to me, but he did ask me if I wanted to report it and I laughed at him. 

I said, “You know, I might be the one that’s drunk but you're the one who sounds crazy.”  Luckily, he took that comment all in stride, but that’s the last he mentioned of it.  But I knew there was no way for me to get justice because I was an under-aged black girl in a small town in Mississippi.  He drove me back to town. 

But back in the simulation, my job is to teach doctors-in-training how to deal with this, how to take a history and do a pelvic exam and handle a rape kit.  If you have never seen a rape kit before, I will tell you.  Before this particular simulation, I also had never seen a rape kit before and I will tell you it has way too many parts. 

There is a moment where I am on the exam table and there are Styrofoam cups with Q-tips sticking out labeled with different places that they have swabbed on me and there's little slides they're supposed to swab and then those are supposed to be sealed and labeled again with those carefully gloved hands and signed multiple times to make sure there's no tampering.  I’m telling you, there's just way too much stuff, way more stuff than you ever wanted to know about. 

But I will tell you, the me in me, Mo, one of the things that I did find out after being a sexual assault victim survivor, whatever it’s called, I will tell you one of the things that I did find out is that you and I, if you ever happen to be in my shoes, you lose all of your modesty.  When I say you lose all of your modesty I mean I could change clothes completely.  I could strip all the way down with you, your grandmother and the queen all in the same room, no problem. 

That modesty thing has been an issue so what I generally try to do is I generally try to look around for other ladies to find out what the modesty level is supposed to be.  It’s a little hard for me because a handful are theater ladies and they are not the most modest people I know, but I will tell you I take my cues from the other people around me. 

But lacking that modesty has helped me because I have done these simulations before where new doctors-in-training are doing pelvic exams for the first time.  So I’m generally sitting on an exam table in a room filled with twenty to thirty soon-to-be or already-are doctors and I am getting a full breast exam and a pelvic exam.  Then they all stand up, and I actually encourage this from all, to get into a little kindergarten line and go one by one in front of the exam table and then look down and look and see their first or second real-life cervix ever.  By the way, I haven't seen my cervix, but I assume it’s amazing because sometimes they say thank you. 

But I will tell you this.  They say thank you, but the problem that I have with that moment of all of the folks going by is that I can’t stay awake.  I keep falling asleep during this part. 

Because I have the kind of background that I do, being a survivor, that means that I have a lot of anxiety.  I have a real hard time sleeping.  Sometimes, in the beginning, there were a lot of flashbacks and stuff.  But after you get over all of that stuff, then all the dreams are like regular, normal human crap.  You walk outside of your door and you get hit by a bus in your dream.  It wakes you up.  You walk outside of your door and you're standing on a balcony.  That’s really worrisome.  I don't know why.  Wakes you up.  You think about a loved one or a friend or something in danger who’s totally not in danger, but in your brain they are.  So that wakes you up.  So you don’t get a lot of sleep. 

You drop a cup of water in your own kitchen and you cry like the world has ended.  But nonetheless, Mo, wipe that up. Get it together. Tomorrow go to your day job. Go smile at strangers while they are slightly uncomfortable that you're not letting your co-worker help them out even though your co-worker’s like faking an illness so they can leave early. 

But nonetheless, put your stuff in your bag, get on the train, ride on down to the fake doctor’s office and be there completely naked and lying on the exam table and people like, “Oh, she's producing tears.”  “Oh, man, she's really in character.”  And, “Why can’t she stay awake?”  It’s because that moment may be the most peaceful moment of my whole day. 

Now, back in the simulation, I want to be the person that people make mistakes on.  When people say the wrong thing or the doctor tries to touch a newly victimized person and I get to be the person to recoil, I want those things to happen to me so that maybe the next survivor might not have to deal with these things. 

But back in the simulation, with the brand-new rape kit, there I am.  We’re finishing up and, luckily, we’re simulating a lot of the rest of the rape kit because some of it involves plucking out twenty-five to fifty hairs out of your head with the root intact and then combing through your pubic hair to put all the dried bits in a little napkin and then putting that inside of a plastic bag and labeling it again with those carefully gloved hands.  Then maybe plucking out twenty-five to fifty pubic hairs, again, with the root intact. 

Now, this may be hard to listen to, but think about if this happened to you on the day where you had the worst human interaction, I hope, in your whole life.  It’s pretty insane. 

So I’m sitting there in the simulation and the poor, bless him, doctor-in-training is there about to be in a really awkward moment of truth where he's about to insert the speculum.  He's got the gloves and the speculum and the lube and the light.  It’s a lot of stuff, people.  There's a stool.  You got to be sanitary.  He's got everything going. 

Then I hear what I think is his nervousness because I hear this little sound, tap-tap-tap-tap-tap-tap.  And that is the speculum on the Mayo stand tapping and tapping and tapping.  I’m really relaxed, but I’m pretty sure he's not.  But then we get through it.  There's some laughter. There's some missteps, but, again, I can smile and correct those right here, right now in this simulation. 

So there I am.  He's taking the appropriate swabs.  Again, putting them in those slides and all of a sudden we hear in this very intense moment outside of the fake doctor’s office door, dum-dum-dum, “Maintenance.”  And the door swings wide open. 

Everybody else in the room is all a-flurry, mortified and the poor 55 to 60-year-old man who has just opened the door, he and I have now made eye contact.  But in between he and I are my feet still in the stirrups with the gown on and the sheet and speculum in there and I can’t stop laughing.  I am laughing so hard I don't hear anything he says; I don't hear anything anybody else says.  I laugh so hard my knees go together, speculum pops out, hits the floor.  Now, it’s a big mess and our moment is over. 

Everyone is mortified and, I will tell you, in future simulations now that that has happened, they now turn the exam table the other way so that it’s no longer facing the door.  But I will tell you this.  I know that that maintenance man and all the people involved and the lady running the event, everybody is mortified.  But I will tell you this.  When I think about it, I think what’s more mortifying than a new sexual assault victim having to tell their story to strangers over and over again because you might have to tell it to the doctor then the social worker.  Then you have to take off your clothes and you get swabbed forty million times. You get plucked and photographed and swabbed like you're the criminal, but it’s because your body is the evidence.  But you're getting violated again and then you're getting another foreign object of the day inserted into you.  Maybe that’s the most horrifying part. 

But what I can do with my lack of modesty is I can help these doctors-in-training and when they do the wrong thing, when they use the word “maybe” when they definitely shouldn’t be using the word “maybe” in that scenario, I can smile at them and I can correct that.  I can correct when they try to touch somebody who just definitely got touched when they didn’t want to.  I can correct that.  I can take a couple of those maybes away because it’s really all science, right?  You're gathering data, you're taking the story.  I want to take just a few of those maybes away on the other side for the doctors-in-training so that maybe the next sexual assault victim won’t have to worry about anything, and also the maintenance guy.