i am 23, black, and almost died of cancer because i was too focused on surviving

June 5, 2017

To donate to the author’s GoFundMe click here: https://www.gofundme.com/katelin-wagner-medical-fund

“come celebrate
with me that everyday
something has tried to kill me
and has failed”
-Lucille Clifton

On April 10th, 2017, after persistent migraines, dizziness, difficulty walking, and nausea, I walked into the Hollywood Presbyterian Medical Center Urgent Care asking for help. Prior to walking into the ER, I had already been turned away from two “free” urgent cares and was on the brink of collapsing. As I waited in Triage, I half-listened as the nurses contemplated just taking my blood pressure and sending me home; however, one nurse: Angie, decided to have me admitted.

After a blood test and waiting two hours, a solemn faced doctor entered the room, “Okay so, you have a white blood cell count of 660,000––that’s 600% more than normal––you have leukemia and will be admitted immediately to the oncology unit.” And just like that, he left.

By KiNG*, AFROPUNK Contributor

I don’t remember much after that––just pieces. I remember laying in the hospital bed shocked at how casually he said my diagnosis. I remember realizing I never actually knew what leukemia was. I remember discovering it is a rare blood cancer and bursting into tears shortly thereafter; I remember my husband, Alonzo, doing the same. I remember nurse Angie coming into my room crying. I remember calling my dad saying, “Daddy they think I have cancer.” I remember my parents rushing to the hospital and their tears.

I remember meeting my oncologist: Dr. AJ. and him turning to my parents, holding their hands while saying, “This really isn’t good.” And to be frank, it wasn’t good at all. The day I was admitted to the oncology unit at Hollywood Presbyterian Medical Center, even though I was still alive, I was dying, and no one was fully confident in my survival.

That night, a Quinton catheter was put into my neck. I was hooked to a large machine and started leukapharesis. Basically, I would sit for two and a half hours as blood flushed out my body, separating the cancerous white blood cells, then clean blood was flushed back into my body. It was a procedure that would make me extremely sick (causing me to vomit) and fatigued. I did this treatment every night in an effort to bring my white blood cell count down in order to make the cancer more manageable.

The following morning, I had a bone marrow biopsy, which was done to help determine my leukemia type. It required taking a huge needle, puncturing it through every layer of skin, tapping and entering the bone to extract marrow. Long story short, I couldn’t be put to sleep for it and the biopsy resulted in the worst pain of my life––it was as if someone was drilling my back for 20 minutes without anesthesia.

Over the course of my 7-day stay in the hospital, I had to have hard conversations––what did my treatment options look like? Did I even qualify for emergency Medi-Cal to pay for treatment (thankfully, I did)? What did I want filled in my advanced directive? And so on.

But, nothing prepared me for the conversation I had with my parents one morning in the hospital. My mother stood by my bed as my dad sat in a chair by my feet – they both looked nervous, “So…,” my mother started, “we have to have this conversation… We don’t want to… But we have to.” She paused for a moment. “Okay. If something were to go wrong, what would you want to happen if you died?” “Nothing is going to happen to me,” I quipped. My mom half-heartedly laughed while tears streamed down her face. “I know you believe that honey, but we need to discuss this, would you want to be buried next to grandma?” I stared ahead for a moment and nodded slowly, “Yea.”

At 23-years-old, I was forced to come to terms with reality: in this cancer battle, my healing is never promised to me, meaning I needed to accept I could very well die at any moment. And I did come to terms with it. In that moment in my hospital bed, Nina Simone rang truer than ever: “Freedom is living without fear.”

By the end of my 7 days in the hospital, my white blood cell count was miraculously down to 54,000, I had taught myself how to walk again, I was taking an oral chemotherapy called Hydrourea, and I was diagnosed with phase III chronic myeloid leukemia (CML)––generally a terminal diagnosis but somehow I was still kicking. By April 17th, I proved everyone around me wrong and lived up to what I said from the start: “I ain’t going anywhere cuz I haven’t done all that I’m brought here to do yet.”

However, that wasn’t to say the road ahead wasn’t about to be hard as hell.

Chronic Myeloid Leukemia is an extremely rare form of cancer due to a cytogenetic mutation––meaning my DNA decided to fuck with my life and produce a whole ass different ass chromosome that produces cancerous white blood cells. Typically, a disease affecting people 60 and up, no one really knows why or how long I’ve had it, but the best guess is 3-4 years.

As of now, because of my severe phasing, a bone marrow transplant (despite my youth) is risky. As an alternative, I currently take an oral chemotherapy called Tasigna, which acts as an inhibitor––meaning it pretty much hits the pause button on cancer cells producing––it does not cure the cancer but it keeps me alive. Knowing this, I will probably have to take Tasigna for the rest of my life. My side effects each day range from loss of appetite to stomach pain to bone pain; but the upside is I get to lead a near-normal life.

However, because my CML is so aggressive, in less than a month, my leukemia has already tried finding ways to work around my medication––meaning it is attempting another cytogenetic mutation, which is resulting in my body slowly becoming non-responsive to Tasigna. On top of that, a month after diagnosis, I went in for what I thought was a simple optometry appointment but it was discovered I have an irregularity in my left eye. What was initially believed to be astigmatism became a complication due to my leukemia going untreated for so long. A blood vessel in my left eye popped behind the retina, and because my blood at the time was cancerous it pooled into a dangerous growth in need of treatment due to its close proximity to my brain.

Today, it is uncertain what will be done as far as long-term treatment; it is even unsure what my long-term prognosis is, but that is a huge part of having cancer: learning to simply live with millions of unanswered questions. In the course of a month, my life has gone from being measured in years to months at a time. Now, I can’t plan too far into the future; if I do, I also spend hours considering every option possible––not because I’m pessimistic but because it’s the responsible thing to do.

Before leukemia, I would travel to perform poetry and I was dedicating all my time to organizing with Black Lives Matter and Black Star Liberation Party; now, my life works around doctor’s appointments––whether it’s seeing my oncologist, or a phlebotomist for blood work, or my optometrist, or an ophthalmologist for eye treatment, or a fertility specialist to ensure my eggs aren’t affected by chemo, or my primary care provider to check my leukemia isn’t affecting other parts of my body––my life is a Grey’s Anatomy episode.

Since being diagnosed with cancer, I’ve realized how much I neglected myself in trying to survive my material conditions: being Black, a woman, genderqueer, impoverished, and radical. Before my hospitalization, I spent years struggling. I dealt with homelessness, struggled with an addiction to self-injury, and was oftentimes hardly able to feed myself. I ignored my health both emotionally and physically because I couldn’t afford for something to be wrong.

For years, I treated every symptom of leukemia as an isolated issue making it easier to excuse. I watched many young Black people around me ignore their health; I listened to older Black people tell me nothing too bad could be wrong because I’m “so young.” However, in refusing to acknowledge my sickness, I became part of a tradition within my community as well as my family. I joined a lineage of women who inherited life-threatening diseases from long term neglect. I joined a lineage riddled with cancer, hypertension, thyroid disease, heart failure, multiple sclerosis, and more.

I let my silent suffering morph into a deadly beast. Here, I was forced to face the truth in my friend Alyesha’s words: “The greatest lie about Black and strong women is that we have to be Black and strong women for everyone else… We are mega beings fractured; still being told we don’t add up, still being mathematicians and the math, still being scientists and the science, still being studied for the sorcery in our palms. [And] still we snap back like our bodies haven’t been dissected, whistled at, whispered about, dismantled, fetishized.”

Looking back, while I refused to go to a hospital because I didn’t want to inconvenience anyone, I also didn’t go because I was uninsured. I had heard horror stories of hospitals charging through the roof and patients being denied insurance. I had seen the ways in which healthcare in our society is treated as a commodified good rather than a right, rather than a necessity to keep people alive. I was deathly afraid of my worst fear, being diagnosed with cancer, coming true and being left without treatment… Especially living under Trump, my thoughts were not extremely irrational.

And yes, while my worst fear did come true, having cancer has proven to be a double-edged sword. There are days I am afraid about the unknown and times where I am disappointed in myself for not going to the hospital sooner. I have moments where I am angered by what my cancer has taken from me and all the things it threatens to take from me. I have times I get hella annoyed by those who try to minimize my illness or how literally no one around me truly gets it. I hate the random triggers I discover throughout the day from being traumatized by this illness or my newfound social anxiety.

But, my cancer has taught me to be more present. I have a second chance at life and my diagnosis has served as a reminder that I refuse to go out this life without fulfilling my purpose. Each day, I have been surprised at how many people pray for me, at the number of people who have told me they wouldn’t be where they are today or even alive if it wasn’t for the work I do, and for that reason I need to stay on this Earth. I have watched the two communities who have helped me grow: poetry and organizing/activism, carry me on their shoulders, and advocate for me. I have been able to witness my love be braver than I could’ve asked and love me so fiercely in the face of death.

And yes, while I feel I’ve survived many lives before this one, nothing in my past has given me the clarity and perspective cancer has. Before cancer, I was hyper self-critical, I never felt I was doing enough, I believed I was weak both physically and emotionally. Now, I know I am a strong ass human being; I am kind, intentional, and understanding. I have learned the importance of putting myself first, of demanding to take up space as a Black woman, but also the critical importance of my health.

I have accepted what comes with this disease. I have accepted I don’t know how long my treatment will work or how long I have to live––but truth is, there is no definite answer for how long any of us are going to live; the only answer we know is that we are all going to die eventually. In all this, cancer has taught me that hope is not some wild ass utopian idea, but hope is taking whatever this life throws my way and transitioning into every stage as lovingly and gracefully as possible. I guess that is truly what is most important: Knowing if anything were to ever happen and I’m no longer here – I find comfort in the fact I did a damn good job at keeping hope alive. I find comfort in knowing I instilled hope in other people, too. So really, in some way, Imma always be here in this life, and ain’t that worth a celebration in itself?

* KiNG is a 23-year-old gender fluid, bisexual, biracial, spoken word poet, as well as co-founder of SLiM Poetry (an open mic at the Container Yard in the Arts District). Through writing and performing, I seek to create dialogue and develop a rapport with readers/audience members. I also intend to shatter stigma pertaining to mental health, feminism, racism, and anything social justice related as well as encourage creative communities to integrate and innovate.