My Rare Cancer Has Recurred 3 Times in 3 Years. At Age 22, I've Learned to Radically Accept My Fate (Exclusive)

At just 19 years old, Eldiara Doucette — known on social media as "Bionic Barbie" — was diagnosed with synovial sarcoma, a rare form of soft tissue cancer that affects only 1,000 people per year. In October, her illness recurred for the third time, and this time treatment required an above-elbow amputation of her dominant arm.

Currently undergoing yet another round of chemotherapy, Doucette posts about her cancer journey on TikTok, where she has over 460,000 followers. In a personal essay for PEOPLE, the 22-year-old opens up about living with her steadily uncertain fate — in both treatment and fleeting periods of remission — as told to PEOPLE’s Zoey Lyttle.

There are no promises in the cancer world. That's something I had to come to terms with quickly as I grappled with my diagnosis at 19. I'm not a person who likes to sit with uncertainty, but synovial sarcoma tends to recur - at least mine does. Over the past few years, I've been in "remission" twice, but there was always the looming possibility that one of my quarterly scans would turn up new growth.

In 2020, I was studying film at Columbia College Hollywood in Los Angeles, but my symptoms began much earlier when I was about 16 or 17. Nerve pain is very specific. The best way to describe it is like an electrical shock. It rang all the way through my right hand. As time went on, it kept getting worse, lighting its way up from my hand into my entire arm.

The doctor took an X-ray of my arm, which — knowing what I know now — isn't helpful in the case of soft tissue cancer. The X-ray came back clear, and the doctor suggested the pain may be psychosomatic, brought on by stress. "Okay, sure," I thought. I was 18 and had no experience with the medical world — I didn’t know any better. I'm not a doctor. They were the experts on bodies; I was just a person living in one.

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Nerve pain is a beast that can't really be touched by anything. It doesn't subside with Advil, nothing of that sort. The only thing that brought me some brief relief was sticking my hand into scorching hot water, something I discovered by “happy” accident while washing my hands one day. I noticed how the heat would disperse the pain I was feeling, which seemed to make it more manageable.

I never damaged my skin, nothing crazy like that, but the water was hot enough to probably be considered unsafe. It didn't take the pain away, though — it merely distracted me from it. Hot water was the only thing that would help me manage that stabbing feeling.

By the time the thick of the pandemic set in, the electrical shocks were so debilitating that I ended up dropping out of college. I moved back home to Florida. My hand hurt; my whole arm hurt. I was miserable and felt stuck. With the world shut down under COVID-19, the future seemed bleak.

I wasn't doing well, neither physically nor mentally, and I was afraid to go to another doctor just to hear them tell me I'm just crazy. I searched far and wide on Google and found a surgeon in Florida who looked like he would take me seriously, at least according to his reviews online.

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During my appointment with him, I ended up crying so hard in the tiny consultation room that they actually sent someone in to ask me if I was safe at home. I was nervous; I didn't know whether he was going to hear me out and do his due diligence or just tell me my symptoms were because I was too anxious. I could barely keep it together as I told him, "Hey, I'm in a lot of pain." He ended up sending me off for an MRI, and we scheduled a follow-up appointment.

When I came back to his office for the second time, I fully expected him to tell me I had carpal tunnel syndrome — I'd long suspected it was something along those lines. When I sat down he asked me to remind him where I was having pain. I pointed to my elbow. His eyes scanned the MRI results on his screen, and after a few moments, he responded with some of the most impactful words I’d ever heard, ones that stuck with me throughout the past few years: "I'm so f------ sorry nobody took you seriously."

My heart sank. It was not a good sign, I knew that for sure. He set the stage for me: nothing you said after a sentence like that could be pleasant. And for the first time, I started to process that this situation was something others had dropped the ball on. Going forward, I would be suffering the consequences of that.

He told me that I had a 5.4-centimeter lesion growing on the median nerve in my elbow. I was pretty freaked out when he mentioned the word lesion, because I knew it just was a gentler way to say tumor. At the time, the word sarcoma held no weight to me, and I also knew that most tumors are statistically benign. I was trying not to get ahead of myself since an MRI report isn’t the end-all be-all of diagnoses. It can't tell you everything you need to know.

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My doctor, however, didn't understate the situation. He made it abundantly clear that this isn't something to mess around with, and in retrospect, I’m grateful he did. I can imagine a world where I might have just gone back to avoiding it for a while.

He referred me to a bigger oncology institute where I could have specialized treatment in the case that it was indeed cancer. There, the doctors scanned through my MRI and said the mass looked benign, but they offered to take it out since it was causing me so much pain. Yes, please.

I had the surgery the following week. What I didn’t know was that the standard procedure is to send a piece of the tissue for pathology. I cried as soon as I woke up, but this time, they were a different type of tears. It was the first time in what felt like forever that I had gone more than a few minutes without the electrifying nerve pain.

My oncologist was very goal-oriented during the phone call where he went over the results of the biopsy. He was like, "OK, here's what we're going to do next. This is what's happening, and this is what we're going to do with you." I was scared. I felt an emotional whiplash from becoming free of this burden just to be reeled right back in. At the time, I didn't really realize the extent of my cancer diagnosis.

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During my first time with cancer, I went through radiation and had two surgeries. The first operation was the removal, and then once we learned the tumor was malignant, they went back in to try to get clear margins. My radiation treatment happened over the course of just a few weeks, one grueling month. The treatments worked, but it didn’t last. The first time around, my remission period spanned almost exactly one year.

Synovial sarcoma is very, very, very rare. Only about one thousand people get diagnosed with it per year. I meet a lot of cancer patients — I've only met two other people with the same cancer I have. It’s a lonely diagnosis, and the five-year survival rate is something from 40% to 60%. That obviously depends on your case and the specifics about it, though once you start dealing with recurrences, it's not really a great sign.

During my first period of remission, it actually took me way longer than I would've liked to go on with my life. I was in freeze mode, unable to decide my next steps. What does a person do after going through something like this? How do I continue?

Eventually, near the end of that year, I did end up breaking free of my paralysis and re-enrolling in school. And only about a month or two later, I was told the cancer was back.

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It wasn't a massive shock, unfortunately. The return of that familiar electric pain in my arm a few months prior had made me suspicious. Just before Christmas in 2022, a scan showed that something was growing back in my tumor bed. I was scheduled to have another surgery, but this time around, I also learned I would be needing chemotherapy.

After finishing several grueling months of treatment, in February 2023, I rang the bell: remission again. This second patch of freedom lasted a little over a year, maybe two or three months longer than my first cancer-free period. During that time, my sister and I moved to Southern California to be closer to more specialized treatment with more resources than my little hometown could provide. There were multiple reasons for the move, but the high chance of recurrence was definitely one of my biggest motivators.

When you're going through chemo, there are a lot of weird tastes and smells that you experience, and they stick with you. It's a traumatic physical and mental experience. There are a lot of unexpected thoughts and feelings that turn your body into unfamiliar territory, and many functions that just no longer feel natural. Now, as I go through chemo again following my second recurrence, it's shocking realizing how much my body remembers.

When I'm in remission, there’s a persistent anxiety; I just feel like I'm waiting around for the other shoe to drop. Unfortunately for me, it did, and I was re-diagnosed with a recurrence a few months ago. They found three new spots this time: one in my bicep, one in my bone and one in my original tumor bed. My surgeon was able to remove two of the three during my biopsy, and that post-op pathology came back positive for cancer. Soon came the discussion that this time around, I needed something more: an above-elbow amputation.

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It's hard to think back on the expectations I had about my life before cancer. I almost feel like I had less of a purpose before all this happened. I was young, floating around clumsily and I was trying to get things figured out, trying to figure out what I want to do with my life. It was strangely helpful for the cancer diagnosis to come in and push me into something much bigger. I understood I had to do something with this.

When I was first diagnosed in 2021, I started talking about it on TikTok. I was staying alone in a hotel near the hospital, going to radiation every day, and most of all, I was painfully bored. Social media gave me an outlet, but I wasn't posting with much intention. I would just make funny little jokes as they came to mind. It was something to pass the time. When I went into remission, so did my TikTok account.

Naturally, things got worse: my cancer recurred for the first time. I was back on TikTok while I went through chemo, but like before, my posts stopped when chemo did. It wasn’t until I found out I needed to have my arm amputated with just four days notice that I really began to rely on it. Once again, the app became an outlet for my thoughts and feelings.

I started making videos counting down to the day of my amputation. I'd seen a few trends of people doing stuff like that, and I thought it was interesting. I figured it might actually also benefit me, and it did. So I did my own take, and those videos ultimately helped me to externally process what was going on.

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There isn't a lot of media representation of young adults with cancer that doesn't have to do with tragedy, and I realized just how big my TikTok presence had become pretty shortly after losing my arm. I was at the Hollywood Bowl seeing a show with my boyfriend, and one of the guys monitoring the line recognized me from my videos. He came over, wished me good luck and let us skip the line. And as I made my way in, it really hit me: people were invested in what I was doing.

On Oct. 29, I had my transhumeral amputation. During the surgery, I underwent targeted muscle reinnervation, which rerouted my nerves to prevent phantom limb pain. We set the stage for a future procedure called osseointegration, where a metal rod will be implanted into my bone. This will make it easier to use a robotic prosthetic, and thus my TikTok username was born: Bionic Barbie.

Going through with the amputation was not a particularly difficult decision. Technically, I was losing the physical presence of my dominant hand, but years of pain and paralysis had already rendered my right arm somewhat useless. I'd already become ambidextrous in many crucial areas.

It was much harder choosing to endure another round of chemo. This time I knew what it entailed — those unfamiliar sensations, losing my hair. It was finally back to a length I liked, and I too clearly remembered all the awkward stages of regrowth that I would have to do all over again

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The first time I lost my hair, it was just one of many things taken by chemotherapy. In a way, it was so new that it was a little bit hard for it to be traumatic. All these crazy things were happening and none of it felt real. I was sad about losing my hair, but I wasn't actively grieving really.

My oncologist and I spoke pretty briefly about me going back under chemo. The fact is that there's no 100% confirmation that this will be for the best. That's just not how this works — no promises in the cancer world. The alternative to chemo was just hoping there wasn't anything left floating around in there, waiting to turn into something.

The doctor left it up to me. He left things vague in a professional way. He couldn't assure me that it would work the same way. No one could promise my cancer would stay away in remission. I talked it over with my chosen family: my boyfriend, my little sister, all the people who are close to me and whose opinions I value. It was pretty unanimous that they were in support of me doing chemo again, and I knew deep down that I had already made up my mind.

Their support definitely gave me more confidence, because since the discussion with my oncologist, I had already been leaning that way, despite what I knew to anticipate about the treatment. There is a chance — a good enough chance — that the chemotherapy will be effective. And just having a small enough chance that this will help me live longer or help prevent a recurrence was enough of a reason for me.

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I used to be very, very scared of the unknown. Like I said, I'm not someone who's comfortable with uncertainty. The recurring nature of my cancer is always lingering, even in those periods of "remission." It's anxiety-inducing because it's such a great reason to overthink; I have too much that I’m afraid to lose.

Interestingly enough, my self-confidence has gone up since my amputation, which sounds counterintuitive. You'd think it'd be the opposite. But nowadays, I've definitely become a lot more confident in my voice and using it to speak out about the things that I experience. For now, that's my ideal goal — to continue on this trajectory of doing advocacy work.

I've learned to accept that I have no control over what has happened and what may happen. I've explained my approach to radical acceptance on TikTok: it's kind of like an "it is what it is" mindset, but I have to be careful not to deny myself the space to grieve and acknowledge that my diagnosis is difficult. That's not a sustainable way to exist; it is what it is, and what it is sucks.

In my head, I know that this is such an extreme thing to have to learn to deal with. I've had to radically accept that I have no arm and people are going to be staring. I’ve had to radically accept that my baldness will make even more people stare. Leaning into that, it's been much easier to actually fake it until I make it. It's been really nice to be able to say that — to myself, to my loved ones and when posting online. It's been really nice to feel it too.

Read the original article on People