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A Specter of Myself

by Kathleen PhulSurvivor, Triple Negative Breast CancerSeptember 16, 2024View more posts from Kathleen Phul

I lost myself. I don’t recall a specific date or time nor a fleeting moment. It happened somewhere between the dozens of oncology appointments, $10,000 bags of poison, the 100,000 hairs I shed, and the 100 pounds of weight I gained. I lost every inch of my being, every hope, every dream, my laughter and my joy. It was cut out of me just like my tumor was. Tossed aside in a biohazard bin and set aflame, never to be seen again.

I was diagnosed with Triple Negative Breast Cancer on December 28th, 2022, and I had my last treatment on December 18, 2023. There it is, simple and concise. One sentence to summarise the worst year of my life. At first, I was excited to have beaten it—to be a survivor. I was thrilled to have somehow endured an aggressive cancer that had nearly consumed me and left me dead. During treatments, I was widely known for being outgoing and extremely optimistic. No matter what happened, I held onto the fact that once this was over and my cancer was beaten, I could put this all behind me and go back to my old, normal life.

In the same December I finished immunotherapy and officially finished my cancer treatment, my breathing became unexpectedly difficult. I would run out of breath doing basic things like putting on pajamas before bed or brushing my teeth. Climbing the stairs in our bi-level house became impossible, and to see my oncologist I was resigned to using the wheelchair—something I had not needed in months. At first, we thought my hemoglobin had somehow tanked. But an emergency CT scan showed that I had lung damage likely caused by one or more of the treatments.

Slowly the anger started creeping in. I would lose my patience over small errors, or mundane things like having to wait in line. I would snap at my husband or lose my cool to family members. I would get frustrated with things my friends said to me, and even more frustrated scrolling social media seeing people live out their picture-perfect lives. My body was already weak, being severely deconditioned from the chemo, surgery, radiation, and finally immunotherapy. But now with the lung damage, I had become a shell of myself.

Before the cancer, I was athletic and strong, with long blonde hair and a bright future ahead of me. I would run 40 kilometers a week in my city’s river valley, surrounded by lush nature. I would go on long walks in the evenings, or on hikes on the weekends with friends; now, I was spending my recovery days sleeping in, lying on the couch, and struggling to breathe. Struggling to shower. Struggling to make supper. Struggling to motivate myself to do mundane tasks. I was angry at my cancer, angry at my friends, at my family, and angry that this body couldn’t seem to do anything.

I had been putting off therapy through my whole cancer journey, telling myself and my loved ones I wasn’t ready—but when my husband put his foot down, I knew it was now or never. So, I went. If cancer was the disease, and anger the poison, my therapist was the antidote. She guided me through what the past year had been like for me. What it felt like to surrender so much of myself to gain so little. To lose cherished relationships to cancer, and to lose a friend to her own diagnosis. I told her things I was too afraid to tell my friends, out of fear of being seen as too sad or negative. To acknowledge that even my loved ones had done things to hurt me out of perceived kindness. To admit that cancer was still here beside me, even if I was cured, and months had now passed.

Anger was the ghost of my cancer. It hovered over me every day, tainting every thought and interaction, and consuming any hope I had once held. I had beaten the cancer; I was a survivor. So why did it feel like it had beaten me? Why was it that I had given so much, and still lost everything? My therapist deals in something called “acceptance therapy.” It’s not so much about forcing you to eventually come to a place of superficial happiness, but rather, to come to a place of neutrality over the things that have happened to you. So here are the facts: I have five scars on my body from surgery, a biopsy, and an IVAD. I have short hair that’s still not growing back in properly and sparse eyelashes that just don’t curl right. My right shoulder is seized from the effects of 25 rounds of radiation. I am obese. I am weak. But somehow, I am alive. And I am still me. At least a version of me. And I had to accept that just like my tumor, the old me was long gone, but the new me… I had to accept that she was here to stay.

As I write this, it’s currently six months into my recovery. It’s a beautiful spring day, with a warm breeze and blue sky. My beloved cat is sleeping on her window perch as birds sing outside in our front yard oak tree. I am listening to my favorite artist while I drink my favorite tea. My still-too-thin hair is bright fuchsia pink, and people say my glasses remind them of butterfly wings. And behind me, I’ve got sketchbooks full of art I have been making and journals dressed in thousands of words, poems, stories, and ideas. I may never run again, or hike in my beloved river valley. I may never be able to work as hard or be as quick to a joke—but I am me. I’ve come to realize that in order for this new, calmer, slower life to exist, I had to let go of my old life. I had to let go of those hopes and dreams, along with all my fears and traumas that cancer gave me. I don’t think the ghost of cancer or the anger I feel towards the injustice of it all will ever leave me. And that’s okay—it doesn’t have to. But it can and does remind me every day that just because my version of success has changed, doesn’t mean it is any less good or valid. And some days, when the anger or grief of it all is too much and I ask myself “What was it all for?” I take a breath, relax, and let myself sit by that ghost of anger, that specter of cancer, and just… be. Just as I am. Scars and all.

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