Living While Dying— An Interview with Kayla Jones

Interview with Kayla Jones. Insights gained while living with cancer for a decade. 

Kayla climbed Machu Picchu two weeks after being cured from cancer. Original photo by Bill Damon.

Kayla Jones lived with soft tissue sarcoma for 10 years. Only when she was told she had no options left did she find a cure— in Lima, Peru. Kayla is a mom and a motivational speaker who spoke for the American Cancer Society in 2007. Between 2007 and 2009 she volunteered to comfort dying hospice patients by doing 13th-hour work. Now she is a mountain climber as well. What follows are her insights on cancer, death, and life— without further ado an edited interview with Kayla Jones:

HS: How did you find out you had cancer?

KJ: It was six weeks after I had had my second child. I was driving on the interstate and I looked down and I was hemorrhaging. I went straight to the doctor's office. I pulled over to a hospital and went to the ER. They said, “You’re pregnant,” and I said, “There’s no fucking way I’m pregnant.” I had just had a baby six weeks ago and my tubes tied.

HS: There’s no way you were pregnant.

KJ: No, there is no way I’m fucking pregnant. You also have to imagine, I’m 21 years old, 21 or 22. I was young. They came back and said, “You’re definitely preggo.” My test came back positive for pregnancy and I went in for a D&C. It all happened so quickly that nobody got called. I came to after my D&C to six doctors around a recovery bed. They said, “Unfortunately you weren’t pregnant.”

HS: You’re like, “Uh what does that mean?”

KJ: Right? I was like, “Yeah, I know I’m not pregnant,” and they said, “You have a very large tumor in your uterus.” It had attached on the other side of my placenta. I don’t know how long it had been there, but it caused my body to continue thinking I was pregnant after I had given birth. My body kept feeding this tumor until it realized it wasn’t a baby. That’s how I found out. The immediate response was, “Well you have uterine cancer.”

HS: Was that not true then? Was it not uterine cancer?

KJ: No it wasn’t. They went in and burned out my uterus. I went back and spent three months thinking, “I’m cancer free.” Then I started having all of these other symptoms. I was tired. I still didn’t feel good. I was experiencing massive emotional mood swings and headaches. I went in for a PET scan and they found, oh I think it was 28 tumors spread throughout my body. The doctors here had no idea what they were looking at, so I ended up being sent to the Mayo Clinic. At this point , I have a 4-month-old daughter and a 21-month-old daughter, but I go. I get down there and it still takes another five weeks to get the diagnosis of soft tissue sarcoma. That was the moment my life changed. Not the moment I thought I had cancer, but the moment they told me I had cancer that didn’t go away.

“That was the moment my life changed. Not the moment I thought I had cancer, but the moment they told me I had cancer that didn’t go away.”

HS: Wow. What was the mortality rate you were told?

KJ: They gave me three years to start. I went on hospice twice in 10 years with a prognosis of anywhere between three to six months left. But then I would end up in a new trial. I did three trials during 10 years, two of which had really good success.

HS: How did you existentially deal with finding out you had cancer?

KJ: I think it was a slow process, a really slow process. At the beginning I said, “No, I’m going to fight this. There’s no possible way I’m going to die of this. Death would be horrible. I’ll do anything it takes.” That slowly became, “Oh, I’m going to die, what does that look like? Is there a way to cheat death?” There was a long period of how do I cheat death and then there was longer period of, “How do I commit suicide and have no-one know that I have committed suicide?”

The honest answer is I had done mushrooms after I was diagnosed. I kind of went on a life rampage. I went to Burning Man and I started going to music festivals. I was sitting on mushrooms in the middle of Moab and I had this understanding that cancer didn’t have to be a bad thing. I had all the time in the world and I could choose to use to live differently. There was an immediate shift in how I looked at myself. It took an eighth of mushrooms and a group of hippies calling me a goddess. You know, “You are a goddess. You are a woman.” I can remember thinking to myself, “These people are fucking nuts,” and then there was this additional reality where they had a point. You do control your life. I can’t control when I die, but I can control every moment while I’m alive. There were definitely cycles of: how do I cheat this, how do I get around this, oh this is what’s happening, I’ll ignore it, let me put it in a box. Then a moment of, “If I’m going to die, I’m going to do it beautifully.”

In the beginning, it wasn’t self-driven, it was this desire for people to see me a certain way— as not the dying person, as not the grumpy person. I think the original need was for it not to take over, but that morphed pretty quickly into fake it till you make it. Eventually, that became how I was living. Every day I lived it, it was that much more clear that it felt good.

The hardest part of cancer was how people are drawn to pain. It was by far the hardest thing for me. I didn’t share my story actively with friends and family because it seemed like when I was in the most pain, more people wanted to be around it. They didn’t want to be around the joy, they were drawn to the depressing side of it. It was really hard for me to understand why people were drawn to the pain.

HS: Do you think you have gained any understanding about why that might be?

KJ: No, I haven’t. I think that American society is very intrigued with death because it’s not spoken about. Maybe they weren’t drawn to the pain but to the experience because it’s so taboo. Maybe I gained some insight but it definitely never felt good.

HS: How did you get through the darkest moments.

KJ: I think realizing it was going to go one of two ways — either it had to get better or it was going to end. Either of those options was better than the option of staying where I was. In those dark moments , death would have been a relief. Unfortunately, I’m not a religious person at all. I don’t believe in God. I don’t believe in heaven. The closest thing to religion I’ve ever had has been this belief that you do have a soul. I’ve watched enough people die to know something happens at death. There is definitely something that happens. There is a feeling, a complete shift in a room when someone dies.

“It was going to go one of two ways — either it had to get better or it was going to end.”

During my sickness, I worked doing what’s called thirteenth-hour. You sit with people who are dying who have no one to sit with them. I think I sat with about 20 people that were passing. It was a huge benefit to me to sit with them because I realized something does happen at death. I don’t know what that is, and I don’t have any desire to know what it is, to be completely honest. But death would have been a relief in my darkest moments and I watched it be a relief for other people. I watched people accept it. Through my darkest hours, I knew either I was going to get that relief or it was going to be better.

HS: Why did you start 13th-hour work?

KJ: I wanted to see what death looked like. I wanted to have a visual. I had never seen someone die. The closest thing to death I had ever seen had been my grandma’s funeral. I know I went to see her before she died, but I don’t really remember it — other than she was old and wrinkly and on oxygen. At her funeral, my creepy aunt pulled all the kids over to the casket and was like, “You need to come over here.” She opened the bottom of the casket and said, “I just wanted you to see that grandma still has feet.” Because of this, I used to think they cut corpses in half.

H: Oh my god.

KJ: Yeah, it was horrifying. And it stuck with me. The only other experience with death that I had was, I had a boyfriend commit suicide. I found him dead when I was 17.

The two experiences I had with death were 1) really strange, and 2) horrifically tragic. I thought I needed experiences where death didn’t feel that way. That is what took me to 13th-hour watch — to hopefully see death be peaceful. And it was 90% of the time. Plus, I learned to read aloud. I was a shitty reader. I didn’t read aloud very well. I was very anxious about it, but that taught me to read aloud, which I’m very thankful for.

HS: Yeah, that’s a very good mom skill.

KJ: Yeah, right!

HS: Had you thought your own death before the diagnosis?

KJ: Oh god no, I thought I was invincible.

HS: You had never had that moment of, “Oh shit I’m going to die,” before you were diagnosed?

KJ: No. There were moments of, “What would happen if I got into a car wreck?” I definitely hadn’t given thorough consideration to what death meant, other than maybe that it was depressing.

HS: Everyone talks about cancer like a battle or a fight, was that your relationship with cancer also?

KJ: No not at all. My relationship with cancer was definitely more of a journey. Cancer shaped my life. I think it changed who I was and how I viewed the world. It was a benefit. I have so much gratitude to cancer. It taught me an exponential amount about the realities of life that I could have never gotten somewhere else.

HS: Like what?

KJ: Like life is built on moments, and you have a choice every day to wake up and say, “This moment is mine, this day is mine.” Things don’t happen to me, I create things. I have the power to change my life in a day. I can change my attitude. I can change what I do for a living. I can change where I live, how I function, and how I treat people. It’s all a choice. I was a very entitled young person when this came into my life. I know that if I met myself 10 years ago, the person I am today I would have no respect for the person I was pre-cancer. I would have pity for that person.

“Life is built on moments, and you have a choice every day to wake up and say, “This moment is mine, this day is mine.””

HS: How come?

KJ: Because I was a victim of life. I think 90% of the world is a victim of their own lives without even realizing it and it’s sad.

HS: People feel trapped and like they can’t do anything about it. Is that what you mean?

KJ: Or that they have no control. Or that they let everything in their lives happen to them without taking any responsibility. The reality is you can change anything. Even while I was dying I had a choice to live, instead of live my life as dying.

HS: Do you feel like you’ve been able to transfer everything you’ve learned to your daughters?

KJ: Yes. Cancer changed the way I parented. I’m probably the most brutally honest parent ever. People are always like, “Oh my God you cuss around your kids?” You do this, you do that. I’m like, “Yeah, they know they can’t leave the house and cuss but this is the reality of how I am.” There’s a huge thing at my house that if your attitude sucks you should take it somewhere else because I shouldn’t have to deal with it. Or you should change your attitude and come have a good time. You can go mourn, or you can be angry — you want to yell and scream, great, yell and scream but don’t let it take over. It changed my parenting enough, and it changed me enough that it ended two relationships. Mostly not because of the cancer, but because of how much I grew through those experiences, what my expectations were of my surroundings, how I wanted to live, and how I wanted to raise my kids.

HS: What was the conversation about cancer like with your kids?

KJ: I think it came in little chunks. I had gone into proton radiation, which was the most successful up until this treatment. At the time I thought it was completely new only to figure out it’s been around for like 30 years, it just wasn’t FDA approved yet. I was also doing brain radiation. So we definitely had conversations about “Why does mommy have seizures? What does this mean?” It was still pretty light. Then as soon as proton radiation happened, we had a massive comeback. I came out of hospice within four weeks. They had shrunk my brain tumor enough that my symptoms had dissipated really quickly. I had been experiencing leg mobility issues, extreme seizures, and headaches. I was off hospice within a month of starting proton radiation. I started living life again I met someone new. I got married.

HS: How did you talk about your cancer with the guy that you met?

KJ: Oh that’s a funny story. I had joined Match and had been casually dating. At the time I was still actually seizing, so this was actually before proton radiation had really been successful. I had a really good friend who found this guy on Match. We were surfing Match, having wine, kind of laughing at these Match profiles, and he ran across somebody. He was like, “This is the guy for you.” I don’t even remember looking at the Match profile. My friend sent a wink or a like and that was it. I kind of remember him saying, “Yeah sushifan772,” or whatever.

A few days go by, maybe even a week goes by, and I get this email in my Matchbox that’s like, “Nice chucks,” because there was a picture of me in Chuck Taylors. We emailed for a month. I was traveling. I was still speaking for American Cancer Society at rallies and at corporate events, but I hadn’t mentioned any of that. All I said was that I was a motivational speaker. We eventually met at this really nice restaurant. We go in and sit down. I think I made it through two glasses of wine and most of dinner when I said, “Before this date goes any further, you should probably know I have stage four cancer and I’m dying.” I remember gulping the rest of the glass of wine and he just kind of sat there. I remember we both started laughing almost hysterically and he said, “Okay, well do you want to go shoot some pool?”

“I think I made it through two glasses of wine and most of dinner when I said, “Before this date goes any further, you should probably know I have stage four cancer and I’m dying.””

HS: [laughs]

KJ: I was like, “Okay yeah, let’s do that,” and we did. We left the restaurant and went across the street and shot pool until two o’clock in the morning. It never really came up again. I don’t remember having a serious conversation about it for over a year.

HS: Why did you end up having the serious conversation?

KJ: When we were getting ready to get married, I had asked to put together a prenup in order to protect his assets so that if I died there wouldn’t be a way to go after him for medical debt. I remember there being a very serious conversation about what I’d want to happen, how my will was set up, the realities of what was actually going to happen.

HS: What was it like right before you went to Peru? You had been told there was nothing left…

KJ: I had started to go to proton radiation again in June. The brain tumor came back, I had an intestinal tumor growing, and my spinal tumor had morphed the way it was growing. Before it was this solid mass. Out of nowhere, it became something that looked like an octopus— wrapping itself around my C7 and my spine. They were telling me this could make me a quadriplegic at any time, this could mean I’m not going to walk.

They were shooting it with radiation. I went in in June and then I went in July and then I went in August and in September. I was going to Seattle, and La Jolla and taking what the nursing staff calls, “death appointments.” I was pretty much on call. If somebody died during their treatment pattern I would get a call and I had to be there in two days, or the next day because the proton radiation centers were booked out seven months. When somebody else’s treatment pattern was over they already had someone else coming in. You were on death watch, hoping, totally sickly hoping, someone would die so you could have an appointment.

“You were on death watch, hoping, totally sickly hoping, someone would die so you could have an appointment.”

I think I went down October 2nd and I got back on the 5th. I went in for a scan about three weeks later and I had absolutely no change. My doctor of 10 years called and said, “We have a problem. This isn’t doing it. You know your brain tumor is inoperable. Your choice is to go back on hospice and wait this out.” I just kind of refused, I flat out refused hospice. I said, “I’m not doing that. Don’t order that. Don’t. If this is the end I’m going to do it without hospice until I absolutely can’t. You’re not going to order it before I’m ready.”

In October the word came in that there was really nothing left to do, and of course immediately I went off the deep end. I picked up another pack of cigarettes and had as much alcohol as humanly possible and went that road for a few weeks. I left my second husband. I definitely have a reoccurring pattern of, “Shit’s getting bad, let’s revamp. I’m not happy. I want to live for the day. Time to move forward.”

My husband hadn’t come to any of the treatments because of his work schedule. Instead a good friend of ours had been going with me. At that point when everything went south, he had been to Mexico to have his daughter treated for a growth issue. She was missing growth hormones. He said, “Let’s look and see what’s out there. There’s definitely treatment options out there that we have no visibility into from the States.” And I can remember thinking, “That’s fucking bullshit.” We live in America. America is the land of everything, right? How could it even be remotely possible that a treatment could be elsewhere— that anything that could possible help me could be elsewhere, other then maybe coffee enemas and seaweed. That was my understanding of alternative therapies outside the United States. You’re going to give me 900 coffee enemas and make me eat seaweed and take wheatgrass and I’m never going to have meat or alcohol or anything ever again.

HS: You knew the fads weren’t where it was at and that’s what you were expecting from places outside of the U.S.?

KJ: Exactly. Luckily, my personal doctor said, “I know of a trial called immunity therapy. It is a modified form of HIV virus they are using to fight certain types of cancer.” I started googling and I could only find one trial. It was in very early stages, but it implied that this mutation of the AIDS virus had been around since the mid 80s. They had mutated the virus in hopes of curing AIDS, and while they were testing it to cure AIDS it cured blood cancer.

HS: That’s pretty crazy.

KJ: But it was all incognito Hannah. There was no way to find out more information. I had called this one trial. I was down their throat, and they said, “You’re not eligible. You don’t have one of these eligible cancers.” I was thinking, “Where where has this been since 1988? Where did this go?” The digging started and it was insane— both the reality of what’s being used outside of the United States and how hard it was to find information.

HS: But you finally found a place that did immunity therapy in Peru.

KJ: Yes, but I couldn’t go right away because in order to get approved there was a lot of testing. I had to give blood, get it shipped it down there. Outside of the U.S., they prove treatment is going to work on you before they give it to you. So it’s not like, “Oh well we’re just going to put chemo in your body and see how your body reacts.” They said, “We’re going to take tumor tissue, we’re going to inject it, and if you have above this percentage of gain we will give you this drug.”

HS: That seems pretty smart.

KJ: It seems really smart to me too. I was like, “You’re telling me I’m going to know I’m going to have success before I go and spend however much on treatment?”

When I walked into the facility in Peru, I was met by my doctor in the waiting room. I didn’t say things to 10 people. I didn’t call in and say a story, then say a story to a nurse and then to a PA and then see a doctor for five minutes. My doctor was waiting in the waiting room for me. He said, “Hey Kayla, you ready?” He spent two hours with me. He had a scan done, and stood with me and looked at the scan in the same appointment— “Here’s your scan.” He put it up. “Let me tell you what we’re looking at.”

HS: That’s amazing, and also kind of devastating to think it’s not like that here. So you knew the treatment was going to work?

KJ: I knew the science worked. Mentally, I had not even begun to process that I could come home cancer free. I think there was too much doubt.

HS: What did you think was realistic?

KJ: I don’t know that I even contemplated what was realistic. I knew I didn’t have a choice, and it had come together so incredibly magically. I had an anonymous donor that called Peru and paid for it. I would never have had the money to pay for it. I still don’t know the exact cost because the anonymous donor wouldn’t allow the facility to release it. There were enough people I was down there with to guess it was over a hundred thousand dollars. I would have had no way to pay. That would have been leveraging my entire world to get down there for something I wasn’t sure was going to work.

HS: But it did work. Do you feel any shifts from being cancer free?

While I had cancer I wanted to say, “This all doesn’t have to be bad, dying is kind of magical.” This is why I became a speaker for the American Cancer Society, to counteract the stories being told that were only about pain.

HS: Death is kind of magical— it is unknown and there are so many possible outcomes.

KJ: It’s endless. Every time you talk to people who have had life experience that brought them close to death, you hear about how being close to death can bring you an abundance of knowledge and of self acceptance. One of the biggest things I took away from having cancer was that I got the chance to know I was dying and got the reality check that I was just as likely to die from cancer as from getting hit by a bus. Now that I’m running around cancer free, it’s not like the feeling of dying has left. We’re impermanent. Why are we treating ourselves like we should be invincible?

“I got the chance to know I was dying and got the reality check that I was just as likely to die from cancer as from getting hit by a bus.”

The shifts I feel are different than I thought they would be. I thought I would have all this gratitude about not dying, only to realize what I just said: we’re impermanent creatures, tomorrow it’s the bus. The biggest thing is physical relief. I hiked 18 miles on Saturday up a 12,000-foot cliff face. I never would have pushed my body to do these things before cancer, let alone think I was going to be capable after cancer. That’s been huge. I did it in a day. We got up at five a.m. and walked up a hill. We started at 3200 feet and ended at 11400 feet because we couldn’t make it to the peak, but it was a class five climb. I’ve always lived on the edge and I’ve always done things in extreme, and to have the ability to push my body to an extreme is incredible.

HS: Do you have any plans for that?

KJ: Oh yeah. Right now I’m trying to make it into the best shape I’ve ever been in. I have a goal to see a six pack of abs which I haven’t seen since before I had my first child at 18.

One thing my doctor in Peru said when I left was, “Science just saved your life and you have a choice to treat your body in a way where cancer won’t come back.” The cure was only a cure for the cancer I had. If I smoke cigarettes till I have lung cancer, I’m not going to be cured of lung cancer. If I eat crap for the next decade get obese and have liver failure, I won’t be cured of liver failure. These are all things I can control so I’m going to strive to do that. I want to climb the nine highest peaks of Idaho. I might want to do a bikini competition. There are all these things I think my body could have done, even with the cancer, that I didn’t push my body to do because there was this stigma of, “you can’t do it,” in my head. I’m sure my body really couldn’t have done some of what I’m doing now. I don’t think I could have hiked 18 miles six months ago. I don’t think I could have hiked Machu Picchu two weeks before I did. I think that’s the biggest change.

The biggest realization is that being cured didn’t change how I felt about life. I had a lot of fear… this is such an odd thing to tell you, but the idea of losing cancer, who had been my biggest teacher, was terrifying. I had all this fear about letting go of something that had shaped me so fundamentally. What if I stopped respecting my life? What if I didn’t make choices based on living? We’re taught to be invincible. I was terrified of becoming one of those people I just spent a decade trying to help realize their impermanence and learn to make choices to fully live. Making the choice to let go of cancer was probably the hardest thing I have ever done.

“The idea of losing cancer, who had been my biggest teacher, was terrifying.”

HS: How did you do it? Mentally what did you go through to let go of it?

KJ: I think the largest part was trusting that I didn’t need the journey anymore, that I had learned from cancer, and that I was capable of taking the lessons with me. But it took a lot of time. The night before we went to Peru, my 20 best friends came over. I stood in the kitchen bawling and said, “I’m not sure I’m ready. This has been such an amazing journey. It brought all of these people into my life and so much more. It taught me so much.” This woman who worked hospice, who has worked with dying people forever, magical woman, looked at me and said, “You’re going to have more journeys. You’re going to watch your children grow old. You’re going to continue to inspire people. You’re going to have a story of hope not a story of death. You get to make this journey even more than it is.” It was really eye opening.

And I went to Peru to the jungle and did ayahuasca. I had this insane ayahuasca trip. I have to tell you I was really anti drugs growing up. I didn’t smoke. I didn’t drink. I didn’t smoke pot because it’s dangerous. I was completely a stick in the mud. I go down there and I do ayahuasca. I had gone into it expecting a visual experience only to end up in my own head. My first visual wasn’t even a visual. My eyes were closed with all the lights off and I was with eight of me that were all talking at once. I was like, “Oh fuck,” but at some point along my mental journey, I saw a woman. This woman was beautiful. She identified herself as my cancer and asked me to let her go. She said, “You called me here to teach you and I taught you all you needed to learn. It’s time for me to go elsewhere, teach someone else. Don’t look for me anymore.” There was a huge embrace in my head. I was like, “oh my God! Right! I don’t need this anymore.”

“I saw a woman. This woman was beautiful. She identified herself as my cancer and asked me to let her go. She said, “You called me here to teach you and I taught you all you needed to learn. It’s time for me to go elsewhere, teach someone else. Don’t look for me anymore.””

A lot of other stuff came to reality there. I decided during that ayahuasca trip that I needed a divorce and I needed to be more connected to my family that I had created distance with over the years. And to give myself a chance.

Both of my major shifts came out of drug use, which I hate to admit, but they totally did. Maybe it’s because you’re in an altered state that you can listen to yourself. Those were huge monumental shifts in my reality. Saying goodbye, and having cancer be so beautiful in my brain. When people talk about cancer, and put a face on it, it is usually a troll coming to shuffle sickness into them.

HS: Yeah and you see the smoking commercials with the people with emphysema and all the wires going in and out of them.

KJ: Yeah! It’s always this horrible thing. No wonder people are like, “I’m going to fight forever.” It’s ugly and nasty. I got to have an experience where it didn’t feel ugly and nasty. It felt beautiful and saying goodbye was heartbreaking to me. Letting go of something — I’m sure it’s how it feels when you walk your kid down the aisle. You’re letting go of this piece of you. The weird thing was, in the vision she was expressing that she was going to do this for someone else. In any other reality I would have thought, “Oh my God! Please don’t do this to someone else! This is horrible. You’re going to infect someone else?” But the reality is that this whole experience was such a gift— to connect with other dying people, to be a friend to a child who is scared, to look at someone who is completely healthy and be able to say, “You have everything and you’re dying too, you just don’t know it.” I mean, pretty big stuff.

“To look at someone who is completely healthy and be able to say, “You have everything and you’re dying too, you just don’t know it.””

HS: I’m asking everyone I interview what their funeral would be like, so do you know what you’d want your funeral to be like?

KJ: Oh yeah, I can totally talk about my funeral start to finish. The thing is that there is no funeral. No funeral in the sense of funeral. I say let people mourn and gather as they’re going to gather. Then party. Hire a band, throw a barbecue. Let people share stories they want to share. Play music that is not about death. And really embrace my life. Show my death how I lived, not how I died.

Take my ashes, go to Burning Man, and send them up with the temple. Take some of my ashes and put them in a necklace and carry me with you. Show me your experiences. Take me where I didn’t get to go. Don’t put everyone in a room and say horribly sad things about how I wasn’t going to get to see my children grow old. Yeah, Let’s just not.

That’s what my funeral would look like. Just go party, please party.