My Story

An overview of my experiences during a two-and-a-half-year chemotherapy treatment for Acute Lymphoblastic Leukemia

 

PREFACE

One of my all-time favorite books is The Fault in Our Stars by John Green. This was one of the first really popular books that gave an accurate depiction of what it can be like to battle cancer as a young adult.

I personally love this book, but quite a few people have the opposite opinion. Why? It not because the book isn’t well-written or because the plot and characters aren’t compelling. No, some people dislike it because they think it’s “too sad” or “unrealistically overdramatized”.

Speaking as a cancer survivor, I guarantee that The Fault in Our Stars is not “too sad” or “unrealistic”. No, it’s just about the difficult parts of real life—the ugly, upsetting, painful parts of living that people often try to avoid thinking about.

I, on the other hand, cherish this novel for its authenticity. I’ve never read a book that I related to or appreciated more than this one.

John Green chose to tell the truth, regardless of what some people would choose to think.

Now, let’s consider the on-screen version of TFIOS. In The Fault in Our Stars movie, the very first thing said by the main character (Hazel) is this:  “I believe we have a choice in this world about how to tell sad stories; on the one hand, we can sugarcoat it. Say ‘nothing is too messed up that can’t be fixed with a Peter Gabriel song’. I like this version as much as the next girl does. It’s just not the truth”.

This disclaimer was right up front; this was the moment when people (who did not want to hear the true version of a sad story) had the choice to “opt-out” of having an up-close-and-personal view of the painful parts of life and choose whether or not to continue watching.

I have never had the choice to opt-out of the ugliest parts of life. I could never pretend that my reality was better than it was. My experiences with cancer have been like a depressing and cringeworthy book that many people choose not to open. But in my opinion, sometimes the saddest stories are the ones most worth reading.

I believe that my story—all of it—is worth reading.

I spent a long time keeping all the details of my battle with cancer to myself. Initially, those years were too traumatic to talk about. Then, when I finally reached a point where I ready to share, I could tell the rest of the world was not eager to listen. Most people wanted me to sugarcoat it. They wanted to keep discomfort and uncertainty at arm’s length. They weren’t ready to hear what really happened. And that’s ok.

But I’m not waiting for anyone to be ready anymore.

My name is Aspen Heidekruger. I’m a cancer survivor. And it’s time to tell my story.

Disclaimer: This post is not going to be clever or particularly well-written. I have nothing inspirational, or poetic to say as a recount these events. (If you want well-written, poetic content, you can find it anywhere else on this blog). This is simply an abridged recording of what took place during my chemotherapy treatment, and I am honestly happy that I managed to write it at all.

There are a limited number of pictures of this time of my life, so don’t expect to see many. You won’t detect my usual sense of humor in this narration. I’m not going to try to make anyone feel comfortable or play my experiences down.

I’m not going to sugarcoat it here.

It will just be the uncensored and authentic truth.

My story began mid-October in 2012.

I vividly remember the intense pain coursing through my abdomen as I sprinted down the sideline of the soccer field—a pain that had been persisting for a week, along with frequent headaches and nosebleeds that I had convinced myself were normal. The sound of the crowd cheering and coaches shouting filled my ears as I effortlessly maneuvered the ball around opposing team members in my path. It was a familiar sound—one that had accompanied me through countless years of playing on club soccer teams.

I was strangely exhausted as I ran, but not from the exercise itself. I’d been feeling low on energy for a while. I ignored this feeling and pressed on, pushing myself harder. I always played my best, no matter what, and that level of skill was enough to convince my coaches that I had the natural talent to someday go pro.

The goal was almost within shooting distance. I tapped the ball out in front of me and drove toward it for the shot.

I noticed the other girl one millisecond before she slammed into me from the side. She was twice my size, and her illegal charge hurled me into the ground, hard. The ref immediately blew the whistle and gave her a red card. She was taken out of the game.

One of the things I prided myself on was being tough; I could always take a hit and stay in the game. But something else was wrong. As I lay on the turf, gasping for air, my torso felt like it was about to explode. My head never hit the ground, but a terrible migraine was causing me to see spots. The world swam around me, and the immeasurable pain crippled me, refusing to abate. I couldn’t move, and a wave of terror swept over me.

I cried. I remember being mad at myself for the unwanted tears. Tears were rare for me; I despised showing weakness. I never cried.

One of the players on the opposing team called me a wimp as the refs and a medic helped me off the field. I sat on the ground for a while, watching the activity on the field resume, unmoving until the pain alleviated a bit. Then, I shakily stood back up and demanded to be put back in the game. I was distraught when my mom, who had already spoken to the coaches, insisted on taking me to the hospital instead.

We went to our local emergency room in Woodland Park, Colorado. It was just the two of us. My parents were divorced, and my biological father was rarely around. So, my siblings, Ashley and Isaac, were staying with my grandparents, Jim and Karen.

The doctors did a physical exam and noticed that my liver and spleen were enlarged. Then, they drew my blood. I was told that the results were deemed “inconclusive”, and I was transferred to a hospital in Colorado Springs for more testing and an overnight stay. At this point, I became upset all over again. I had soccer practice the next day and refused to miss it. In addition, I despised needles with every ounce of my being. This transferring of hospitals meant I had to get a second IV put in when I had barely tolerated someone placing the first one.

I was only a naive kid; I assumed that checking into a hospital for the night was just a standard procedure.

My mom didn’t tell me what the doctors were suspecting.

She didn’t want to scare me without being certain. 

When we walked into that pediatric hospital room in Colorado Springs, I was already counting down the seconds until we could leave. I hated everything about that hospital room: the sterile smell, the white color scheme, the ridiculous little “get well soon” teddy bear carefully placed on the pillow, and the feeling of being stuck in a prison for sick people.

I was an athlete, my cleats squeaking clicking against the tiled floor only served to remind me of that fact. This new environment wasn’t the place for me. I cursed the ridiculous pain in my abdomen for landing me there in the first place and decided I never wanted to be in a hospital again.

I tried to settle in, taking my soccer gear off and placing it in on the stand by the cot that was to be my bed. I felt so exhausted that night, even brushing my hair proved to be too much of a challenge. After the nurses put in my IV after three attempts and finally left me alone, I collapsed into bed and told myself I would tend to my hair the next day. I had no idea that my mom remained awake all night, sitting beside my bed.

I was coaxed awake by a new doctor that next morning, my abdomen aching worse than ever and my head feeling fuzzy. My room was full of people—a mix of strangers and familiar faces. There were three doctors and a surplus of nurses. Among them stood my grandfather, my church pastor, and my mom. After groggily taking note of the look on everyone’s face, I could tell something was off, but still didn’t grasp the severity of the moment. I had no frame of reference for that kind of situation.

When the doctor on my bed said, “You have leukemia”, I felt a similar confusion. I’d never even heard that word. Then she began to explain more details. Leukemia was a cancer of the blood, and my blood was already almost entirely comprised of cancer cells. My organs were swollen with it. If I didn’t begin treatment immediately, I would be dead within two or three days. The chemo treatment for girls with Acute Lymphoblastic Leukemia would last two-and-a-half years.

And finally, her words slowly clicked together like puzzle pieces in my head. 

It dawned on me. I was dying.

It is difficult to recall any of the events that took place next—it feels like there are gaps in my memory. I know I was immediately taken away for a bone biopsy and then a port placement surgery in my chest so the doctors could begin IV chemotherapy. Waking up after my port surgery is the last memory I have before they started chemo.

Leukemia is typically a childhood cancer that develops in children under ten years of age. Because I was almost thirteen, I was a high-risk patient. This meant that I had to receive double the amount of chemo that a younger leukemia patient would typically receive—doses of chemo high enough to kill a healthy adult with a body that was less resilient than a teenager’s.

My treatment was to be the longest and most intensive chemotherapy regimen that any person, of any age, with any cancer, could receive. 

Many cancer patients go home for outpatient treatment right after they begin chemo, but my first treatment did not go well. Instead, it went about as poorly as it could have gone.

I don’t remember receiving my first dose of chemo, but I remember the moments following. I went into what my doctors described as a state of “drug-induced psychosis”. My brain felt like it was on fire, and I began panicking, crying, and screaming bloody murder. I believed I was in a nightmare, fighting for my life against some invisible enemy. I actually bit nurses that tried to restrain me.

That is the last thing I remember before falling into a coma. 

I was not conscious to hear the doctors question if I was brain dead— that they predicted I would die from the chemo if my cancer didn’t kill me first. I remained in a comatose state for a week, missing the CT scan to check if my brain was still functioning and the concern over my liver and kidneys being in “failure range”. During this time, the treatment for my cancer continued, despite its side effects, and my muscles quickly deteriorated under the effects of the drugs and lack of movement.

My family was prepared to say their goodbyes. No one expected me to wake up. But somehow, I did. Something unexplainable happened to cause my body to stabilize just enough.

But living came at a very steep price. What followed my awakening would only make me wish I had never woken up at all.

PHASE 1 (months 1-2): Induction. High-dose IV Dexamethasone and High-dose Prednisone (both steroids) and multiple chemos, including Vincristine, Doxorubicin, Daunomycin, and Cytarabine. Additionally, continuous high doses of IV antibiotics.

When I woke up in that hospital room full of flowers, cards, and the crying faces of my family members, there was one thing that I knew for certain: my body had been ruined.

High doses of dexamethasone and prednisone had caused me to gain 30 lbs in water weight during my comatose period and had left me with temporary diabetes. My gall bladder showed signs of needing emergency surgery that was too risky to give. My immune system had disappeared (I was neutropenic), and my blood counts were a mess. Vincristine had caused severe neuropathy that left my hands and feet numb and useless. I could barely speak, and I felt like I had some amplified version of the flu. I was too weak to move on my own, or even roll over in my bed. The effects of my treatment had left me virtually immobile.

But there was something worse: the pain.

I had never been in such excruciating pain in my entire life. My past experience with broken bones, a concussion, and other sports injuries were nothing compared to what I was feeling when I woke up from that coma.

Head to toe, everything hurt. My organs felt like they were on fire. It felt as if every bone in my body had been fractured. My skin felt as if it was covered in bruises. Every slight movement sent sharp pain radiating through my body. It hurt to breathe. It hurt to exist.

In the medical world, doctors ask you to rate your pain on a scale from 1 to 10. One this scale, answering 1 means you have no pain. Answering a 10 means your pain is so unimaginably excruciating that you can barely move and nothing could feel worse.

My pain was a 10. But I rated my pain a 9 every single day in the hospital. The tough kid in me refused to admit to a 10.

My doctors claimed they had never seen someone react so poorly to chemo treatment, but they knew that the chemo was responsible for my life-threatening side effects. However, in light of my cancer, there was nothing they could do but press on with treatment.

I was in a new world—a world where I felt like I was dying a slow, horrible death. Those days in the hospital were consisted of me lying helplessly in my bed, begging for the pain to stop.

It felt like I was dying a slow and horrible death, and in many ways, I was.

My mom and my grandfather slept in my hospital room with me every night. The flowers, cards, and gifts went untouched. At one point I noticed that my soccer cleats and shinguards were nowhere to be found.

The doctors soon realized that nothing more was going to improve. After two weeks, they decided to send me home because they feared I would catch a severe illness since I was staying in a hospital with no immune system. If I got sick, I had no immune system to fight anything off. In order for me to be at home, I had to be on IV antibiotics and insulin shots at home and had to travel an hour to a clinic in Colorado Springs every few days for chemo treatments.

Somewhere in my mind, I believed that going home meant leaving all that pain and suffering behind. I was smiling for the first time in two weeks as they loaded me up into a wheelchair and wheeled me out to our car in the parking lot. While laying down in the hospital bed had already been unbearably painful, being in an upright position was somehow more excruciating. Even with the car seat leaned back all the way, it still hurt so much to be in the car. Every bump in the road or turn in the road was painful. I remember the world was spinning and feeling too weak to lift my head. But I was so happy to be going home–so happy to feel like I was getting away from all the horror—I pathetically croaked along to a song that was playing on the radio with my ruined voice. My mom and my grandfather cried at this.

It didn’t take long for me to realize that my suffering was far from over. My days at home were no better than the ones in the hospital. They were filled with immense pain, immobility, and not being able to eat. It hurt to be touched by anyone or anything.

My mom slept in my room with me, because I wasn’t able to call loud enough for help when something was wrong. Getting me into a comfortable position each night was nearly impossible with how much pain I was in, and I wasn’t able to roll over or move sufficiently on my own during the night. I eventually fell asleep due to sheer exhaustion. Sleep itself was not even a reprieve. I had such bad nightmares that I woke up screaming and crying every night and then had to deal with my pain again. If I needed to use the bathroom during the night, I had to call for my mom. And the pain was what woke me up each morning. Then, I would start crying because everything hurt so much and ask my mom to help me out of bed.

After writhing around on a hospital bed for weeks, my hair had become tangled beyond repair. I recall sitting and crying in the bathtub as my mom tried her best to detangle it with conditioner, but it was hopeless. It was falling out at that point anyway, so I had it shaved off.

Every day, I sat in a recliner in our living room, just trying to survive my unending, painful existence. I called for help whenever I needed to use the bathroom or had to have someone help me drink water. My hands and feet were numb with neuropathy, so I couldn’t hold anything or pick anything up on my own. Food was sickening because my tastebuds were off, and I was in so much pain my stomach was constantly upset. My mom tended to my needs, brought me all my medication, helped me move around, and took me to the clinic every few days for me to get more of the chemo that was making me feel so terrible as it tried to save my life.

It was hell on every level. In less than a month, I reached my first breaking point.

After two weeks of being home, it sunk in that my battle with cancer was only beginning. My chemo treatment had only just started, and my new state of health was already unbearable.

It wasn’t just the physical pain and immobility I was forced to endure. I had lost so much more than that.

My ability to do everything I loved was gone.

I had to drop out of the 8th grade and was too sick to even do school from home. There was no more going outside to wander through the woods or go hiking—no more Nerf gun wars with my brother, ultimate frisbee or basketball in the park, or climbing trees. I was too sick and too weak. My useless, neurotic hands couldn’t hold my camera, turn the pages in a book, or pick up a pencil to draw. My ruined voice couldn’t sing. I couldn’t even get myself out of my own damn bed. I was so nauseous, I couldn’t enjoy eating. Most people that knew me, including my dad, chose to forget that I existed after sending me a card and flowers.

I couldn’t even go anywhere other than the clinic to get chemo because my immune system was so low. Even when my immune was functioning, I was in too much pain to leave the house.

I didn’t know if I would ever be able to do anything remotely active again, let alone ever set foot on another soccer field.

Privacy, independence, and control over where I went, what I could do, how sick I felt, how much pain I was in, or if I would even live to see the next month, were all things that were completely out of my control.

I couldn’t do it. I just couldn’t. It was just too much. There was no way I could take that level of pain and suffering anymore—no way I could bear the weight of all the things I had lost and what I was facing physically each day.

There are no words to describe the despair, hopelessness, and terror I felt.

I have a distinct memory of crying to my mom, panicking and hyperventilating as I spoke to her:  “I can’t do this for another day. It’s too much. I can’t do this for two-and-a-half years.

She started sobbing as she looked at me—knowing there was no hope she could offer—and said: “I know”.

This was the first time I truly understood what it felt like to live a life that made you want to die. 

And it wouldn’t be the last.

During traumatic life or death situations, the human mind often “shuts off” the emotional side of things so that it can dedicate all its energy to just surviving. It’s like staying in a perpetual state of fight or flight, where you don’t feel many emotions.

This is what happened to me in the initial stages of my chemotherapy. My mind shut my emotions off as I just tried to survive the physical onslaught of cancer and chemo. I stopped feeling scared, hopeless, or in despair. After those initial weeks, I went into survival mode as my body just tried to tolerate the pain that was my new normal. I just existed in hell, without acknowledging the state of my life on a conscious level.

To survive something inhumane, it seems that you have to temporarily become less than human.

My life became like clockwork designed by the devil for the next year.

I was put on medications to address the numerous chemo side effects, and those drugs had their own side effects.

It was a sick game of “pick your poison” that became a positive feedback loop.

I was given prescription meds to prevent nosebleeds, combat nausea and dizziness, to alleviate acid reflux and heartburn, and to soothe mouth sores.

For pain, my doctors prescribed me a bare-minimum dose of a narcotic called oxycodone. Because most of their younger cancer patients were not in severe pain, my doctors didn’t fully believe me when I told them how much I was hurting. They were additionally concerned that my completely-out-of-the-picture biological father (who had a history of drug abuse) was somehow convincing me to get narcotics so that he could use them himself. My liver and kidneys were not stable enough for me to take additional Ibuprofen or Tylenol (Acetaminophen).

The medication I was allotted only ever brought the pain in my body down to a 6 or 7 on the pain scale.

Three times a week (more if there was an emergency), my mom would drive me down to the Center for Cancer and Blood Disorders in Colorado Springs for chemo treatments. I despised the hours I spent there. Every appointment followed a similar structure:

 

1) Wheel me into the clinic via wheelchair

2) Take my vitals and ask me to rate my pain

3) Draw blood for labs and poke me 4-5 times because my veins had all but shriveled up (a side effect of Vincristine).

4) Take me to an infusion room to access my port, flush it with heparin and saline, and then… a) hook me up to an IV pump, give my blood transfusions to keep my counts up, b) start a drip for the bags of chemo, c) give me shots of chemo, OR d) drug me up to do a spinal tap to put chemo in my spinal fluid. No matter how it entered my body, the chemo all made my life a living hell.

5) Have a chat and evaluation with a doctor (as nurses took vitals and made sure my body handled the chemo alright) so that they could record how I was doing, do physical evaluations, talk about labs, prescribe necessary meds, and discuss the plan going forward.

6) De-access my port, transfer me back to a wheelchair, and wheel me back out to the car.

 

All the while, I was suffering. It was no one’s fault, it was just inescapable.

While I know my medical team was doing their job, it felt like I was a lab rat they experimented on.

At home, I faced a different kind of torture.

I required a full-time caretaker, and since my mom had taken up the position, she was unable to work. Our community had thrown a fundraiser (one I was too sick to attend), and we used that money to get by. My grandparents basically lived at our house full-time to help my mom and take care of Ashley and Isaac while she was occupied with me. My aunt also helped out occasionally. Our house quickly became a pseudo-hospital. I was monitored 24/7. Everywhere you looked, there were IV poles, sanitary wipes, prescription drugs, and rubber gloves.

My days all bled into one another with the same routine.

I would wake up, and the feelings of pain and sickness would immediately hit and overwhelm. Whimpering and crying, I would call my mom. She would immediately be there, pulling back my blankets for me, lifting me into a sitting position, and sweeping my feet over the edge of my bed to pull me to my feet. She would help me to the restroom and then settle me into the recliner in our living room before getting me pain and nausea meds. My closest companion became a cloth bag full of rice that could be heated up in the microwave. I used the heat to help make my body aches bearable.

I sat in that same godforsaken leather recliner every single day at home. It was the only place that was even remotely tolerable to be. And it became my prison.

There was nothing I could do but sit in that chair, choke down a bit of food or medicine occasionally, and be in immense pain, day in and day out.

I was completely helpless. I couldn’t shower, dress, move, or go to the bathroom without help.

I tried to watch movies, but I just hurt too much to pay attention to what was happening. At night, trying to sleep was nearly impossible. Every position was so painful, it felt like I was trying to sleep on a bed of nails. Once exhaustion finally won out, I would drift into a sleep that was comprised of horrible, drug-induced nightmares that woke me up screaming.

Then I would wake up in the morning and do it all over again.

I was living in the ultimate medical nightmare—one where I could barely move, had no power to stop the pain, and was powerless to prevent the doctors from torturing me. It was a dream I couldn’t wake up from.

Everything you just read above—everything I experienced and felt—persisted for the entire first year of my chemotherapy. That became my reality. I don’t need to reiterate how bad it was as I describe each chemo phase; you can just keep it in mind as you continue reading. Going forward, I will simply list out what my treatment regimens looked like and describe important details.

PHASE 2 (months 2-4): High Dose Methotrexate With Hospitalizations.

High Doses of Bactrim (antibiotic)

The prognosis for surviving leukemia is better if you have no evidence of leukemia 4-5 weeks after starting treatment.

Two months into my treatment, there were still signs of leukemia in my blood.

This caused a lot of concern, but my doctors decided to press on, hoping my chemotherapy would become more effective.

At this two month mark, my chemo regimen changed. I was to receive 4 treatments of high-dose methotrexate. Each 24-hour infusion took place in a hospital, where your toxicity levels and vital were monitored closely. During those stays, I endured longe hospitalization periods until my blood levels and kidney and liver markers were no longer in a dangerous range.

Each of these treatments tanked me. I would get terrible rashes, persistent fevers, and headaches in addition to everything else I was feeling. It always took longer than expected for my body to stabilize enough to be discharged from the hospital.

For those two months of methotrexate treatments, I essentially lived in the hospital. And I hated every second of it.

For me, the only thing worse than suffering from severe medical problems is to have that suffering take place inside a hospital. There, I was constantly hooked up to IV poles and vital monitors; There, I was forced to wear hospital gowns, was woken up frequently every night by beeping machines and nurses taking blood, and had no say in where I went or if I could leave.

Hospitals felt like prisions to me, and they were places where I had expereinced a lot of trauma. 

Soon after beginning these treatments, there were no more signs of leukemia in my blood. This was good news.

During these months, Christmas and my birthday (on January 5th) both passed. I remember being too weak to open or pick up my presents on Christmas morning. My sister opened them for me. My 13th birthday was the first of several that I was too sick to celebrate.

PHASE 3 (Months 4-12): Spinal taps, PEG-asparaginase, Erwinia Shots, Doxorubicin, Daunomycin, Cytarabine, Cyclophosphamide, Anthracycline, Vincristine, Thioguanine, and Bactrim (antibiotic).  

During this phase, my doctors introduced a handful of new chemo treatments to the picture. Aside from my normal IV infusions, I also began receiving frequent spinal taps. For this particular procedure, methotrexate (liquid fom) was injected into my spinal fluid via a large needle. These spinal taps became the one I looked forward to in my life because my doctors put me under before the procedure. This meant I got to experience an hour of no pain and uninterrupted sleep. I always wanted to cry when I woke up and reality hit me in the face again.

Another new addition was that I had to get dozens of blood and platelet transfusions to bring my low blood counts up to levels where the doctors could continue to “safely” administer more chemo.

Another one of my new chemos, PEG-asparaginase, was known for causing severe allergic reactions in patients. The first time I was transfused with PEG, there was no problem. The second time they began a PEG drip, I immediately went into anaphylaxis (AKA I had a major allergic reaction).

I felt tingly all over my entire body, and it got hard to breathe. Beginning to panic, I weakly called for help. Thankfully, my doctor was already in my room. She immediately disconnected my IV and gave me steroids and Benadryl to combat my reaction.

The other patients who had received PEG from the same batch I had (but didn’t have someone in their room to immediately stop their drip) all ended up in the hospital.

Because of my adverese reaction to PEG-asparaginase, my doctors had to switch me to an alternative: Erwinia Shots. Two intra-muscular shots of Erwinia were to be administered in both of my legs three times a week for six weeks. 24 shots total. I was so used to being stabbed everywhere else with needles at that point (my arms, hands, fingers, the port in my chest, spinal cord, etc) that this scarcely phased me.

During this period of time, I was hospitalized multiple times due to fevers, and my weight decreased to 85 lbs because I was too nauseous to keep much food down.

It was during this phase of chemotherapy that I became determined to do just one small thing for myself.

One morning, when I first woke up, I refused to call my mom for help. I struggled for a few minutes, determined not to give up, straining everything in my body to just roll myself over and swing my feet to the floor. Then I used my arms to push myself up from the bed until I was standing shakily. From there, I weakly hobbled myself into the living room where I collapsed in my recliner. It was the first time I had been able to get up from a sitting or lying position on my own and walk without help. It was a catch-22, however, for I had no way of getting to my pain pills or even opening the bottle with my neuropic hands. However, I was so happy that I accomplished one small feat on my own—and that my mom could sleep in a bit later—that I just sat in more pain than usual for a while.

From there, I gained a bit more strength every day. I began to pathetically hobble around our house, first with support and then without help. I was always unsteady and stumbled easily, but walking slow loops around the island in our kitchen became a part of my daily routine. Eventually, I became stubborn again and insisted my mom take me outside to walk on the half-mile road that looped around our house. It was the slowest half mile of my life. As my mom and grandmother held me up, I shuffled along at the pace of a turtle. I felt as if I had nothing more in me to give, but I refused to stop until we made it around that loop.

I remember the first day that I tried to run again, first walking up to that same dirt road by my house. My feet felt numb, I was weak and had no balance, but I still wanted to feel what it was like to really move. I lurched forward and began moving as fast as I could for about 10 feet. It was clumsy and awkward and slow, but it was more than a walk. And it made me feel ridiculously accomplished.

It seemed like things were looking up a bit. While my pain continued, I had regained some basic mobility, and my body had been otherwise stable for a few weeks. My brain stepped out of survival mode, and I could feel my emotions beginning to resurface. I felt like things were starting to get better, and that long-awaited bit of breathing room and hope felt amazing.

But then something unexpected happened.

A new pain began in the lower right side of my abdomen.

Within an hour, what started as a dull ache began to increase exponentially until it felt like someone was twisting a knife into my gut. My mom rushed me to the hospital in Woodland Park, but they needed to transfer me to Denver Children’s hospital.

By the time the ambulance arrived in Denver where they wheeled my gurney into the ER, my pain was unbearable.

I was writhing furiously from where I lay, begging someone, anyone to put me out—begging them to use anesthesia. When the doctors asked me to rate my pain, this was the only time I ever answered 10. I felt like I would die if that pain didn’t stop. The doctors had to run tests, and the next hour was the worst of my entire existence.

I had an intestinal blockage caused by adhesions—adhesions with seemingly no cause. I needed immediate surgery or I would die. The doctors finally granted me my wish and gave me the anesthetic for surgery. It burned through the IV in my hand, and then I was out. My surgery began.

My platelet and white cell counts were bottomed our, so there was nothing to clot my blood or give me an immune system. My doctor predicted I would bleed out on the operating table or get a life-threatening infection. They told my mom and grandfather to expect the worst.

Somehow avoiding both of those worst-case scenarios, I escaped death again.

I woke up from my surgery before I was supposed to. My body hurt like usual, and there was a new, burning pain where my blockage had been, but there was something else really wrong. I felt like I was choking, and I couldn’t move.

When I opened my eyes, I found that I was intubated. There was a mask on my face and a tube down my throat to keep me breathing. My hands were strapped to the bed at my sides to keep me from pulling the tube out. There was an arterial IV in my arm and I had a catheter in. I panicked and tried to call for help, but nothing came out around the tube. I began hyperventilating, terrified and confused.

The nurses had told my mom to leave, saying I wasn’t supposed to wake up for hours. Thank god she didn’t listen. She was the only person who heard my muffled noises from where she sat beside my bed. After she explained to me what was happening, I had no choice but to try to relax and endure the tube shoved down my throat until exhaustion caused me to drift back into sleep.

When I awoke for the second time in the ICU, the tube was gone and my hands were free, but I knew something with absolute certainty: My entire world had just been changed for the worst. Again.

My body had next to nothing to contribute to healing itself from my surgery, and my doctors had begun chemo again, so there was no hope of my blood counts drastically improving.

Without an immune system, I ended up getting shingles from some other patient in the hospital, and they had to move me to an isolated room away from the other pediatric cancer patients.

When a nurse took out the arterial catheter in my arm, (A plastic tube or “line” in one of the major arteries in my arm, used to measure blood pressure more accurately), I began to bleed profusely due to a lack of platelets. That nurse panicked, called for backup, and put her entire body weight on my arm to keep me from bleeding out. This caused an immense bruise to form along the entire front of my left forearm.

When I was finally able to get out of my hospital bed for the first time, I was bent over at a 60 degree angle. My surgery site hurt too badly to stand up any straighter. I couldn’t unbend my bruised arm. Instead, I had to cradle it against my chest. I sobbed as I took a few painful steps around my room; my tears dripping from my hunched over form onto the tile floor.

I wouldn’t be able to fully heal from that surgery— or even stand up straight without immense pain— for six more months. I was unable to fully unbend my arm for the next four months, and it took just as long for that bruise to fade away.

I was then experiencing all of my usual pain and sickness on top of the new pain from a surgery that wouldn’t heal properly.

Any sense of stability or hope that I had felt was eradicated.

The worst part was that I was no longer in “survival mode” where I wasn’t feeling my emotions. My body stopped being in fight or flight when it realized that living a life where it felt like it was dying had become the new “normal”.

I only lasted a few more months before I couldn’t take it anymore. I couldn’t take the pain and suffering anymore.

No one could help ease the despair I began to feel. No one could say anything to me or make the physical pain more bearable. There was no reassurance that things would get better. No one could even tell me that I was going to live.

And I still had a year and a half of chemotherapy to go.

I had no hope for any kind of future, but it wasn’t because I didn’t know if I would survive. No, it was because I had nothing I could even imagine in my future that could make it worth living through more pain.

I was only a teenage kid. The best thing I experienced in my life before I got sick was soccer, and I knew that even if I survived my cancer and was able to play soccer for the rest of my days, it would not be enough to make up for my suffering. There was nothing I wanted badly enough in the future to give me the motivation to keep fighting.

More than that, I couldn’t fathom continuing to fight my physical battle. I didn’t know how to survive the physical torture any longer.

I was in so much pain physically and emotionally. My body was so weak; it was barely hanging on. Everything I wanted was out of reach. I had forgotten what it felt like to be happy, to not be in immense pain every day and night, and to not just barely survive each day. My body, my heart, and my spirit couldn’t take it anymore. I couldn’t do it anymore. Living life—my very existence—was too painful. I felt like an abused animal who was ready to curl up and stop breathing.

I wanted to die. It was the only way to make everything stop.

It was then that I realized for the first time that I had a choice. 

I refused my chemo.

Everyone flipped out, and rightly so. We all knew that stopping my treatment was a guaranteed death sentence.

My family threatened to drag me, kicking and screaming.

My doctors were threatening to call child services if my mom didn’t bring me in.

I didn’t care. I needed it to end. I couldn’t live like that anymore.

I knew no one was going to drag me to get chemo after how much I had suffered from it; My family all knew what it was costing me to just keep breathing.

I held my ground for close to a week, which was a huge deal given how strict my chemotherapy treatment needed to be.

What finally changed my mind was not my own desire to live—I was at peace with the idea of letting go.

It was the tears of my family that did me in. I couldn’t bear the thought of hurting them, and I agreed to resume my treatment for their sake. Not for me, for them.

I chose to keep going and braced myself for what was to come, but living came at an incredibly high physical and emotional price.

PHASE 4 (Months 12-30) Maintenance: Spinal Taps, Vincristine, High-Dose Prednisone (steroid), Oral Methotrexate, Bactrim (antibiotic).

My last phase of chemotherapy lasted about a year-and-a-half. This was one of the most challenging phases. To compliment my physical side effects, I was also beginning to face the emotional side of the battle as well.

After a few month of taking prednisone, my weight shot up from 85lbs to 150lbs. The steroids also caused intense mood swings (mostly anger), kept me from sleeping, and gave me migraines and bone pain.

I began to struggle with severe anxiety and PTSD during this time.

I would experience panic attacks and flashbacks, and the steroids exacerbated these intense emotions.

When my immune system improved enough, I refused to stay at home any longer and insisted on going back to school for my freshman year. It was agonizing to get through every school day. I had no energy and was so weak I couldn’t even carry my own backpack. I took my oral chemo, narcotics, and anti-nausea from the school nurse. I wore a wig, could barely hold a pencil and had to miss classes for chemo appointments.

I had no close friends because no one knew how to interact with a girl who had cancer—a girl who physically looked as ill as she was— and I didn’t blame them. I was an abnormality in the social makeup of that school. My anxiety and PTSD made it difficult to focus in class or handle the stress of tests.

I went home every day, exhausted and in immense pain, took more chemo and steroids, did my homework, and tried to get some sleep while the prednisone worked against me.

The year crawled by.

This is when my mom got diagnosed with stage 2 breast cancer.

She underwent a mastectomy and began her own 6-month chemotherapy regimen.

I remember getting the phone call while I was at school and having a panic attack in the hallway. I didn’t even have the capacity to handle the news.

My mom was in and out of the hospital as she fought various infections. After nearly two years of the stress of taking care of me, her body was not in any shape to handle chemo. This was another devastating blow for my whole family.

My mom had been the one holding me together through my treatment. Despite what she was going through, she did her best to continue to take care of me. Her treatment was hard on her, but thankfully it didn’t impact her body as nearly as much my chemo regimen impacted mine.

The nightmare continued. Soon after my mom’s diagnosis, my sister tore her ACL and meniscus in a basketball game. She underwent surgery to repair the damage. Soon after that surgery, she had appendicitis and required emergency surgery to remove her appendix. Then, she had to receive a second surgery for her knee.

My mom and I were both on chemo, and my sister was recovering from her surgeries. Our house had become an official hospital run by my grandparents and brother:

My mom in her bed, my sister on the couch, and me in my damn chair. The stress and tension in the air were palpable. I could barely handle being at home after school, but I had nowhere else I could be; I was too sick.

We were all just trying to survive during the last few months of my chemotherapy— We were all worn thin.

I couldn’t take the weight of everything anymore. In those final months, I began pushing myself to run. It was the most grueling process. Given my physical condition, I had no business even attempting anything more than walking.

I had no stamina or balance, and my entire body had atrophied. Every time I ran, even for less than a minute, I would feel incredibly sick afterward. My body would be filled with more sharp pains; I would get dizzy and occasionally throw up.

But, I forced myself to do it, desperate to not feel like the sick, weak thing I had become. I needed to be able to run from everythingI needed to move and feel strong.

I needed to feel like that was some small part of me that was still alive.

So I pushed myself and my body to the limits. I would wake up before school every morning—when I had the most energy—and run until I had nothing to give. Then, I would struggle to survive the school day. But I didn’t care. I was already struggling to survive every day, no matter what I did or didn’t do. I increased my stamina slowly,  by a handful of seconds each day, and endured the sickness that followed every run.

It was the only thing I had control over in my entire life.

And it wasn’t enough.

I hated how I looked, how I felt, and what my life had been reduced to. Two birthdays had passed in this final phase of chemotherapy, and I refused to celebrate them. I couldn’t bear celebrating my life when I wished I wasn’t alive.

I had lost my will to live a year into my treatment, but I kept going. I kept surviving, and I didn’t even know why. My will to live was still gone.

Near the end of my sophomore year of high school, my mom finished her chemotherapy early because her body couldn’t tolerate any more treatments. But her cancer was gone, and she was officially in remission.

Then, the day finally came for my last dose of chemo.

And as I took that final handful of pills, I felt nothing.  My only thought was: “I wish cancer had killed me”. 

PHASE 5 Remission (5 years long): periodic blood checks for the recurrence of cancer, along with echocardiograms, ultrasounds, or PET scans to check things as needed.  

Two and a half years. 912 days. 21,900 hours. 1,314,000 minutes. 78,840,000 seconds.

All spent in a living hell.

Cancer did not only break me, it shattered me. It pounded me into dust until there was nothing left to break. It obliterated everything I was. It crushed my body, my mind, and my spirit.

My cancer had taken everything from me, including my hope for feeling happy in the near or distant future. I forgot what happiness even felt like and there was nothing in life I even wanted anymore.

The potential for a better future meant nothing to me. It felt like nothing could make up for my suffering.

I had been dying every day of my life physically and mentally for almost three years. Pain, suffering, and loss became my reality. I couldn’t remember the last time I had felt anything else.

My years on chemotherapy weren’t like experiencing a traumatic event once and then recovering from it. No, I knew what that was like.

That moment your dad walks out on you is one traumatic event; having a friend commit suicide is one traumatic event, being one hairsbreadth away from death for a single moment is one traumatic event. All these things on their own can take years to recover from.

I experienced all these things during my treatment. Those were just small blips of trauma on my three-year-long timeline of traumatic events and physical discomforts.

Each day the torture would start anew; It felt like I was being held at gunpoint by my own body.

Cancer obliterated everything I was and all that I knew about the world. It stole my health and devastated me mentally and emotionally. The pain and trauma were fresh every morning I woke up and persevered every hour of every day. It never ended.

So yes, cancer broke me. It broke me in every imaginable way. And ever since I took my very last dose of chemo five years ago, I have been trying to pick up the pieces and put them back together. That final handful of chemo pills brought me to a long-fought destination.

But it was not to be the end.

As I stood at the end of the chemotherapy road, I found myself facing the start of a new and unexpected journey: the one that would take me back to all my broken pieces— the path that would lead me out of the hell that cancer and chemotherapy had led me into.

My journey back to the world of the living has been an entirely new battle–one with new physical and emotional challenges that resulted from of my chemotherapy.

Ever sinc my treatment ended, I have faced many difficult health problems due to the long-term effects of my chemo.

I have had to overcome difficult trails again and again. Life has proven to be incredibly difficult in so many ways.

There has been so much pain and loss. But I never gave up and always fought to overcome any limitations or obstacles that arose. I’m still fighting.

And I don’t plan on stopping aytime soon.

I have too much to share with the world.

Next Recommended Reads 

Click here to read my “cancer survivor journey out of hell” analogy.

Click here to read my personal statement as a Leukemia survivor.

I promise these are both worth the read!

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