What It’s Really Like To Treat Kids Who Have Cancer

The Fault In Our Stars
The Fault In Our Stars

I love my job. I wouldn’t trade it for the world. 

With that being said, sometimes I really hate my job.

It’s not a matter of having a boss who’s a jerk, or co-workers who eat my food, or having to sit in a tiny cubicle where I spend 40 mind numbing hours a week. No, it’s none of that at all. Sometimes I hate my job because I can’t fathom why innocent children have to die slow, painful deaths.

Some of you are already put off by that statement, and honestly, that’s a big part of the reason why I’m finally writing this. It has taken me five years of being a pediatric oncology nurse to find a way to verbalize the multitude of feelings inside of me. When people find out what I do for a living, their first response is always, “Oh, that must be so hard.” I’ve learned that this statement is not a segue into a deep, meaningful conversation about the nightmares I have, the horrific things I’ve seen, the children I’ve cared for who are seconds away from death yet are holding on for their parents’ sake. No, this is a statement meant to be superficial and said out of assumed obligation, because honestly, who wants to talk about it? No one wants to hear about children who are so overtaken by tumors that you can see them bulging out of their heads. No one wants to hear about the 20-month-old screaming out in pain because his body is so full of leukemia that it can no longer function properly. I get it, I really do. And that’s why I’ve rarely spoken about it, up until now.

I deal with death or impending death on a daily basis. I get attached despite trying to separate myself. But you see, you can’t really be a pediatric oncology nurse without becoming attached; in a way you have to give a little bit of yourself to your patients and their families in order to do your job the best way that you can. It’s a fine balance between trying to preserve your mental sanity and helping your patient through months and years of toxic therapy that can (and does) lead to secondary malignancies.

“You give kids poison for a living.” That was a joke a friend had made to me, when I was describing my position at an outpatient clinic a couple years ago. I was so angry with him for saying that to me, but once I settled down, I realized his crass humor was actually true. I literally give children poison and toxic chemicals for a living. In fact, one particular protocol for leukemia calls for administering arsenic trioxide, of which a patient would receive daily for a week at a time. I hate to say it, but I’ve become so desensitized to the drugs I give patients that I don’t always think about their long term side effects. Instead, I focus on cyclophosphamide causing hemorrhagic cystitis (bladder bleed, in a nutshell), methotrexate affecting both liver and kidney function, bleomycin affecting lung function, cisplatin affecting auditory function… I could go on for hours. Each potentially life saving drug has the very real possibility of killing my patients.

I think I have a tendency to come across as flighty or ditzy from time to time, but it’s only because 99.9% of my brain power is dedicated to ensuring my kids receive the appropriate drug and dosage. Fellow nurses will quote me on this – right patient, right drug, right dosage, right route, right time. Calculating body surface area and double checking it against at least three different orders (all in different places, naturally), hoping to some higher being that pharmacy actually puts the chemo in the bag (don’t get me wrong, I LOVE pharmacists..so under appreciated. But sadly, this has happened before), and then watching over my patient fervently to make sure every last drop of chemo goes into their tough little bodies. Giving cytotoxic drugs involves double checking that the medication matches the protocol and timing, as so many of these drugs are time sensitive. Questioning whether or not certain dosages of doxorubicin (“that red one”) require the heart protectant dexrazoxane. Essentially, there is so much involved in administering such potent and high risk drugs; several double-checks between physicians, pharmacists, and nurses must take place before the medication would ever reach a patient. It requires some careful thought and attention. So yes, on my days off, I like to watch mindless television and movies and kind of stare at the sky…because that’s just about all I have left in me to do.

A beloved patient’s recent and unexpected death prompted me to begin actually dealing with my feelings. You see, as a single woman in her late twenties, you typically rely on your friends and some wine to get through hard times. However, most people just don’t get it. Even nurses in other specialties don’t get it. But it goes both ways; I personally don’t understand how my one friend has worked in the NICU for so long – I see the wonderful things she does for her patients and the lengths to which she goes to provide the best care she can. But I simply don’t understand what it’s like to take care of a premature baby the size of your hand who is coding multiple times a night. I don’t know what it’s like to have to do compressions on a critically ill adolescent, who up until a few hours ago was previously healthy. I don’t know what that soreness in your arms feels like after a shift like that, which for my PICU friends, happens often enough. Just because we are all nurses doesn’t mean we fully understand what the other goes through; even nurses within our own specialties don’t always get it, as I’ll touch on later. 

I had sent this particular patient up to the ICU on a Saturday night. I had never felt nervous for him; instead, I initiated a rapid response to get him to a higher level of care that I could no longer provide. I fully expected him to be back on my floor by the next night, and told him that. My old co-workers from a certain New York hospital will definitely back me up on this one – I live for rapid responses. No, I’m not some twisted person who likes seeing kids get really sick and need to go up to the ICU; I just enjoy the challenge and complexity of critical care. Short of working in some sort of ICU, pediatric oncology is as close as you’ll get to critical care. The rapid went smoothly, and my patient was up in the ICU within an hour. Three hours later, he died.

When the charge nurse told me he had died, my immediate response was anger. At my charge nurse. I was in such disbelief that I thought this nurse was playing a joke on me, however cruel that may be. I didn’t want to accept it, I didn’t want to believe it, I didn’t want him to die. You see, I was rooting so hard for him, even though I knew he had a poor prognosis. But you still believe for each patient, you still have hope. You wish and you hope and you pray (well I don’t pray but whatever the nonreligious equivalent of that is) just as hard as their families. Because their fight is your fight. Their struggles are your struggles. Their victories are your victories. Their loss is your loss. And for someone to die so unexpectedly like that, after repeatedly telling them you would see them soon, well…it just hits you in a way that is simply indescribable.

Within minutes, the ICU nurse called back down to our floor and told us his mother wanted to see me. The resident on call that night and I went up the elevator to the second floor, both numb and in shock. I hadn’t quite started crying at this point, but as soon as I saw the door to his room closed off with a divider, my eyes began welling up. Seeing my patient lying on his bed, looking nothing like what he did just a few short hours earlier, as his mother wept over him, is not something I can readily forget. Her first words to me were, “What happened Ali? Why did this happen?” I felt like I had failed her. I felt as though I personally failed her, and my patient, and his family. I felt like I hadn’t done enough, even though logically I knew I had done everything I could as a nurse. I trusted in my skills and judgement to get him up to the ICU. But I still failed him, because he was now dead. I failed his sweet, sweet mother, who would keep me entranced with her beautiful stories of how lucky she was to have such a wonderful and loving family. I failed his family, who lost such a beautiful child. I was so distraught I couldn’t find the words to comfort his mother, not that there are any. It’s times like these when the only thing going through my mind is, “I’m 27 years old, what do I know?” A former co-worker once gave me the best phrase to say after death: “Thank you for sharing your child with me.” That’s not going to bring your child back, though.

I stayed that morning well after my shift ended to do his post mortem bath. There were times when I couldn’t even look at him, not because I was disgusted or put off, but because I was afraid if I really looked at him I would start crying and never stop. Instead, I waited until I reached my car and ugly cried the 45 minute drive home to my friend’s apartment, who I had not yet told what had happened. I cried so hard my throat, eyes, and face hurt, to the point where I couldn’t speak, as he held me in a tight bear hug. I never could quite tell him what happened, but he hugged me anyway, because he knew in that moment I was pretty helpless. I couldn’t even find the strength to say a simple ‘yes’ to a towel so I could shower. I cried until I fell asleep, and then I cried on my way back to work that night. Unfortunately, working as a travel nurse doesn’t afford you paid days off. I had no choice but to return back to work that night, and the next night.

It wasn’t until after the funeral that I finally felt some closure, but it feels so selfish to say. I’m not the mother who just lost such a beautiful soul of a child. I’m not the sister who just lost her baby brother. I’m not the brother who just lost his best friend. I’m not the friends who just lost their classmate, their peer, their buddy. No, I’m simply the nurse who lost yet another one of her patients. 

So who exactly are you supposed to talk to about this, anyway? It doesn’t really help that I’m just about impossible to get to know, and that I’ve simply never felt like it was okay to verbalize such feelings. (I’m a child of divorce, can you tell? But really, let’s not go there.) Between nursing school and my first job as a nurse, I was conditioned to believe that we as nurses are not allowed to feel this way, that we are not allowed to get attached; as this level of attachment is essentially unethical. That for me to get attached and feel distraught over a patient’s death was wrong. Not necessarily a sign of weakness, but a sign of inappropriateness perhaps. I tend to gravitate towards senior nurses at every job, probably because I miss my mom and seek out mother figures, but also because I need a work role model to look up to. Someone who has seen and done more things than I have, someone to learn from, someone to help mold me into a better nurse. It wasn’t until I worked at an outpatient clinic with some of the most intelligent and incredible nurses that I started to come to terms with my emotions and attachment, especially after losing two very special patients. Even then, I still didn’t talk much about it. Instead, I just asked how these nurses dealt with it, and they credited their significant others for helping keep them sane. With no one in my life that I shared such an intimate connection with, I knew I had to reach out to friends at the very least. Except I just couldn’t.

After my patient died I worked the following weekend, another three nights in a row. A very close friend of mine who also happens to be a pediatric oncology nurse on my unit had also worked the same nights as I did, and we’re a pair that likes to go out and have fun on our days off. If you know us, you know that’s basically the understatement of the year, ha. We started our day off with some bloody marys at 10:30 AM, and basically didn’t stop until about midnight…because sleep deprivation and copious amounts of alcohol are clearly the solution to any problem.

Well, that’s what it took. Five years of built up emotion, some whiskey, sleep deprivation, and some more whiskey. I broke down and ugly cried at a bar, but she was right there with me (what a good friend). She’s been doing this just about as long as I have, so she grapples with her own emotions as well. When you get two people together who are both the Fort Knox’s of their personal lives and deep dark secrets, it’s going to take a whole hell of a lot to get one of them to break. But once I did, she did too. We cried for a solid hour about our job, about our patient that we’d lost, about former patients we’d lost, about how horrible it really is, about how pediatric oncology nursing is the loneliest job in the world. We let it all out in the middle of a bar in San Francisco, after the Giants just won and were heading to the NLCS. (I later emailed the owner of the bar to simultaneously apologize and thank them for letting us cry well after closing time.)

I know it sounds like I’m rambling, but every last word is relevant. It has taken me so long to verbalize my feelings about my job, and the thing is, I know I’m not the only one. I don’t know what it is I’m exactly looking for with this; maybe this deeply personal insight into the last five years will speak to someone and make them feel a little less alone. Maybe the next time you see myself or another nurse distraught, take that extra minute or two to really listen. It’s not a matter of finding the right words to say, because I guarantee we’d rather you listen and let us talk. Let us know that it’s okay to talk, that it’s okay to feel, that it’s okay to be sad. Don’t shun us because the topic is depressing and makes you uncomfortable; yes, it is, but this is what we do for a living. No one holds a gun to our heads to do it, but that doesn’t mean we have any less right to talk about it. So please, go give a nurse a hug. They could probably use one. TC mark

Related

More From Thought Catalog