CIC-DUX4

“You have 6 tumors in your brain.”

The words came from the doctor who had just asked us to sit down and the other patients to leave the ward. She looked at Ava - my little sister - who sat in the bed. A couple of months ago, we had been asked to leave the ward without explanation; now we understood why. It was when a doctor had to bring bad news to a patient and their family.

I sat in the windowsill, my parents each in a chair beside me. The room turned silent; no one breathed, no one moved.

“Okay,” Ava sighed stoically, breaking the silence.

The doctor continued with some unintelligible words. They didn’t reach my ears but rather a barrier of disbelief that had surrounded my body. The doctor fell silent again.

My chest tightened, constricting my breath as if invisible hands gripped my lungs. Gasping, I struggled to draw in air, my body betraying the calm facade I tried to maintain. This prompted both my parents to jump in my direction and throw their arms around me. It felt wrong, suffocating even, and I shook myself loose from their desperate grips. “I’m not the one dying!” I exclaimed and leaped into the bed where my sister was still sitting as if frozen in time. She was completely still and sat with her legs crossed as if she had been interrupted meditating. I wrapped myself around her with the same desperation as my parents had wrapped themselves around me. She calmly put a hand on me as she started asking the doctor questions. How she remained absolutely composed was hard to fathom.

We had all been expecting a message like this at some point, but this was simply too soon to believe.

When hope was still alive

About a year and a half prior, we had gotten the earth-shattering news that she had cancer. They had found and identified a tumor in a muscle around her lower abdomen.

“Aggressive, rare, and mutated cancer” were the words the doctor had used. CIC-DUX4 was the scientific name.

The following months were a whirlwind of hospital visits, emergency rooms, and new vocabulary as we learned more about cancer, chemo, and medication. Before her diagnosis, Ava had never shown signs of illness. But the treatment made her sicker than ever. After countless days in the chemotherapy room on the 17th floor of the hospital (or just ‘17th’ for short as we quickly started calling it), they removed the initial tumor. A few more rounds of chemo followed to eliminate any remaining cells. Finally, she got a clear scan—no cancer. On paper, she was cancer-free. Although you’d imagine this would be a reason for celebration, the relief was brief, overshadowed by the looming dread of what might come next

The doctors warned us: “From what we know, the cancer is difficult to fully remove. Even with a clear scan, cells might still hide, and it is possible it will develop again.” Every 3 months from now, they would have to scan her again to keep an eye out. We then knew, that not even a clear scan would be good news, it would only mean another 3 months of worry and anxiety in the unknown. 

At this point, Ava had attended the funerals of three co-patients, who had quickly become friends. They were all similar in age, all with a similar type of cancer. Witnessing their last days up close had been heartbreaking, each loss a reminder of the fragile line between life and death. Sick and dependent on help from others. In pain, if it had not been for the morphine. They were fighting until the very end. However, they had been at peace with their fate. They didn’t struggle with cancer. Cancer had struggled with them.

Ava declared that she did not intend to ever go through chemo again. “It is not a life worth living,” she said. “The pain, the sickness. I can’t go through it, and I can’t put you through it.” She had spoken to us as a family, and we understood her message. Trying to convince her otherwise would be useless. Asking her to go through all that again would be selfish. We all had to bite our tongues and silence our breaking hearts, each of us wrestling with the urge to plead for more time, more treatment, more hope.

One clear scan. That was all she ever got. Already by the next scan, they discovered metastasis in her lungs. Another operation. More chemo. Her boyfriend had begged her to reconsider her previous statement, and she agreed to chemo, but only because they offered her treatment that was milder and less harsh on her body. Less harsh, less effective.

She was angry and heartbroken. “How much of me will they have to rip out and throw away before it is gone?! How much of me will be left?! It’s not a matter of WHEN it comes back, it’s a matter of WHERE!”

The question was answered much faster than we could have ever imagined in our wildest nightmares. Even the doctors had seemed frightened.

Living for hope

After the operation where they had removed the tumor in her lungs, we huddled together - family, friends. I took leave from work, and we all moved back to the small village we had grown up in. It seemed like the only reasonable thing to do. Although our parents were divorced, they had a good relationship, and our dad came by for dinner regularly. Being together served a higher purpose now.

That Easter, me, Ava, her boyfriend, and some close friends had rented a summerhouse. Close to nature, surrounded by beauty and stillness. Our neighbor was the ocean. The living room was facing east, and every morning we could watch the sunrise. Some evenings we hadn’t even made it to bed before the sun was rising again. I can still hear Ava's laughter as she was lovingly mocking the boys for not being able to get the fireplace going. 

We spent the weekend in a bubble, enjoying hearty food, soulful wine, and each other’s presence, trying to forget the looming shadow of Ava's illness. Each moment was a rebellion against the darkness, a testament to our resilience.

Easter morning, we started preparing for the big, most anticipated Easter lunch. We were all engaged and cheery for the lunch, and the anticipation rose as more and more food made its way to the table. We were all around the table, passing dishes left and right, filling our glasses and toasting each other, grateful for being in each other’s company. It had always been me and my sister’s favorite holiday - spring was arriving, flowers showed up, and the air was teeming with crisp promises of a season of life and rejuvenation. And the food. Nothing could beat the food served at an Easter lunch. Imagine a huge variety of different, quite simple dishes. Each not on its own much to brag about. Some of the dishes you might even have on a lazy afternoon any time of the year. But once a year, only around Easter, is when each and every ingredient is in season, the weather aligns with the abundance of food, and you can taste spring in each bite. The season simply complements and completes the experience, all senses being catered to.

Euphoria filled the air as we celebrated life.

PLING! The sound of porcelain against metal pierced the sound of the feast. Everyone around the table turned their heads toward Ava, who was staring at her arm that had landed on her plate full of food. Mystified by what had happened, she said, “I... I dropped my arm. It just fell.”

The cloud of euphoria turned into a tornado that violently sucked all air out of the room, all taste out of the food, and all sound of laughter seemed to disappear from not only this afternoon but from the entire weekend.

We were reminded what we had tried to forget. The cancer could return. It was not a question of when, but where.

Ava hastily made a joke about being clumsy, and I chimed in saying it wouldn’t be a proper lunch if she didn’t leave the table with at least one stain on her clothes. A chuckle, not laughter, brought people back to the table. We tried the best we could to bring back the atmosphere, but it had gone and was nowhere to be found.

After lunch, her boyfriend had to leave as he had an exam to prepare for. In the evening, the rest of us relaxed on the couch. Tired from the food. Beaten by the sudden throwback to reality. Ava had gone to bed and I came to sit with her in bed, asked how she was. She preferred to be alone. “I rather enjoy hearing you all talk through the wall,” she said.

The day hope died

It was early in the morning, and I hadn’t been able to go to bed. Worry had kept me up, and I had lost sense of time. The sun started rising, and I watched it in disbelief. Soon after, Ava came out of her room. The entire left side of her body felt weird, like it was asleep, she said. We called 17th on their hotline to ask for advice. They immediately asked her to come in for a scan. We woke up the others and gave them an update. Within the next hour, we had all packed and cleared the summerhouse. A very long drive towards the hospital started.

After arriving at the hospital, Ava was promptly admitted for observation. We passed the time in her hospital room, sharing breakfast and exchanging light-hearted banter. Despite the somber setting, the familiarity of being back at 17th offered a strange sense of comfort. Soon, a doctor arrived and explained the necessity of a spinal scan to rule out potential nerve compression from a tumor.

I updated Dad on Ava's condition over the phone, relaying the doctor's concerns about a possible tumor in her spine. His voice trembled with worry as he promised to join us at the hospital as soon as possible. My mom, upon hearing the update, left home immediately and met us at the ward.

Not much later, her boyfriend showed up. His parents had driven him there as soon as he heard she was getting a scan. We all sat in the open space together until our parents also showed up. We sat around and talked for a while. Ava’s in-laws left again, and her boyfriend went back to their apartment 30 minutes away to continue studying. So far, without any results from the scan, there was no reason for him to hang around. The day passed, evening came along, and still no result. We asked the nurse if it would be okay to go out for dinner. With a sturdy warning to not let Ava walk alone due to her impaired balance, she agreed. Just as we got into the car, Ava received a message. Her result was available online. The car fell silent, and she asked if she should check it - maybe they needed to react fast. “If they needed to react fast, they would call you. If we check it, and it is bad news, we still need a doctor to explain it to fully understand, and then we rob ourselves of a chance to enjoy the evening. Can’t we just let it remain unknown, go for a walk, and sit together for dinner?” I almost begged. Everyone agreed; a walk was very needed after having spent the entire day in the ward. We were hungry and exhausted.

We walked in her favorite park, then dined at her preferred restaurant, ‘Vegetable’. We talked and joked, temporarily pushing aside the looming test results. In the park, I was struck by so many feelings; regardless of the result, the world would look different after knowing it. While walking arm in arm with my sister, I had never felt closer to losing everything.

I was scared it would be bad news, and even good news would not be good because something was still wrong. Anger surged within me, my jaw clenched tight, my breath shallow, and my entire body tense as if it was about to explode. "How dare they?" I seethed inwardly. How dare they sit there and take life for granted? I almost felt like they were mocking me, those two ladies on the bench. I bet they have known each other since they were kids. I took it personally, as if they were flaunting in my face what a blessing it was to have a witness to life. It was difficult, but I dug deep and reminded myself that I still had my sister right here. I wouldn't allow negative thoughts and feelings to take away the memories of this evening with her. Gradually, my breath steadied, my throat no longer felt clogged, and it was as if I had returned to myself in the here and now.

Ava suddenly stopped. She got close to a tree where the flowers had barely just opened. With all her being, she drew in the scent of the flowers. Her eyes were closed, and I swear for a moment it looked like she was floating. “I wish we could stay here forever,” she said. 

The sun was still out, and while we walked back toward the apartment, Ava shared with me how wonderful it was to see our parents hanging out together like that again and sharing stories from before they divorced. I agreed, but deep inside I knew their fragile truce wouldn't survive her passing. I hated that her illness was the glue temporarily binding them together. Not only would I be losing my sister, I would be losing my parents all over again. 

When we reached their apartment, her boyfriend came down, and she greeted him with a huge smile and showered him in kisses. Being out for a walk had done good for all of us. But especially Ava seemed to have enjoyed it. She said bye to her boyfriend and left him to get back to his studies.

By the time we were back in the car, the shared anxiety had found its way back to us, and the ride back to the hospital was quiet. We knew there was no way around. The result was ready. It could be positive, and we could go on with the gnawing uncertainty of regular cancer anxiety, or it could be negative, and the world would be irrevocably changed.

We got back to the ward. A nurse greeted us and asked if we had enjoyed the walk and if we had checked the result. Ava chirped that it had been rejuvenating with a walk and that we had considered checking the result, but we decided to wait for a doctor.

“I am glad to hear you enjoyed the walk,” the nurse responded with a look on her face that was difficult to interpret. She smiled gently, but her eyes did not have the regular joy she usually met us with, and a fear rose to my throat.

Back at the ward, we greeted the other patient and were in the middle of a friendly conversation when a doctor entered and asked them to leave.

Nothing but….

When the doctors had spoken about treatment, they had said the only difference it could make was maybe 2 weeks.

2 weeks with no pain. 2 weeks in a hospital bed.

Without any hesitation, and as composed as ever, she declined. “I am too busy for that. I have too much I still need to do. If you need me, I will be with my family.” We sat together in the doctor's office, absorbing her determination with a mix of pride and heartbreak.

The day after hearing the results, she and her boyfriend announced they would get married the following Saturday. We spent 5 days arranging the wedding. All stars aligned. They got the venue they had dreamt of, they were able to get a spot at the church on the following Saturday, and all guests were able to attend. Amidst the whirlwind of planning, we clung to this unexpected joy, a brief respite from the relentless sorrow. Since Ava had stopped chemo - it clearly didn’t do anything anyway - she was back on her feet, although a little out of balance once in a while. 

She was able to walk down the aisle by herself. She was glowing. Her smile wide as ever.

The wedding was a celebration of their love—for each other, for their families, and for their friends. Although we only had the space until six in the evening, we didn’t stop until eleven. The venue knew the story and had no problem letting us stay. No one wanted it to end. The elders went around three times to say goodbye, wanting to give one more hug each time. The young ones kept ordering drinks. Someone started playing the piano, and another set up a wine tasting. It was as if everyone wanted to consume the evening with all their senses.

The following day was spent together, opening presents and reading greeting cards.

The next day, in spite of her imbalance, she went horseback riding and back to her favorite restaurant.

The day after that, she didn’t wake up.