True Life of a Pediatric Oncology Nurse

Last year for my English class, we were to write a profile essay about someone who makes a difference in the world in any way possible.  Of course, the beaming faces of my oncology nurses popped right into my head.  The nurses made a HUGE difference in my life, and many other little lives of the children occupying the third floor of CHOC.  It's amazing how they manage to make a sucky situation less...sucky(pardon my narrowed vocabulary).  Inspired and excited, I quickly contacted one of my favorite nurses to do an interview for my paper.  I know what cancer is like through the eyes of a patient, but my vision comes to a halt knowing what it's like for a pediatric oncology nurse whose job is to be around many cancer patients all day. Being an oncology nurse isn't only difficult due to the hours and tedious work, but as I learned, it can also be extremely heavy on the heart and soul.  So here's cancer from a nurse's point of view...

She Calms the Storm

In the darkest of times, we tend to grasp onto anything that’s good.  That small ray of sunlight peeking through the gray, ominous clouds seems to make any bad situation worthwhile.  On the third floor of Children’s Hospital of Orange County, the nurses, including Erika Crawford, are that ray of sunlight for the pediatric oncology unit.  From Erika’s petite body frame to recently shaved dark hair, her big, beaming smile was the first thing I would see when I stepped out of the elevator; unfortunately, I would be heading straight to my hospital room where I would stay for days at a time receiving chemotherapy.  Greeted with a genuine and excited hug every hospital stay, Erika’s welcoming tactics assured me that everything was going to be okay.  Through the miracles and losses, Erika goes far beyond her calling as a nurse in the lives of the patients and families by building lasting relationships and providing unwavering support. 

Erika is a Pediatric Hematology/Oncology and Transplant nurse.  For more than five years, her responsibility has been to “administer chemotherapeutic and bio therapeutic agents” and to “provide the medications that will bring [patients] comfort through the rough treatment process.”    However, Erika does more than her job description requires, not only for the patients’ benefit, but also for herself.  She first wanted to be pediatric oncology nurse when she “had a clinical rotation at Children’s Hospital of Los Angeles’ pediatric outpatient hem/onc clinic.”  She was “amazed at how brave these kids are and how little affected they were by their diagnosis.”  Erika was especially tickled by the sight of “little bald heads riding tricycles down the hallway and making crafts in the playroom.”  From that point on, she truly believed she could “learn from them how to live life with such great courage as they do.”  By being a patient of her’s, I’ve witnessed firsthand her beautiful character that must go hand-in-hand with such an eye-opening job.  

Other than her smile and laughter, I noticed Erika’s short hair when I first met her.  It was starting to grow out from when she shaved her head in 2010 for the St. Baldrick’s Foundation.  According to www.stbaldricks.org, The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.  Erika said, “I decided that I would do St. Baldrick’s because not only would I be raising money for a good foundation and cause, but I would be doing something that was drastic for me, to come alongside my bald little friends to show them I truly care and know what a hard place they’ve been put in,” after she was inspired to do so in honor of a patient she grew close to who relapsed and she “felt that [she] needed to do something.”  Erika tells me, “You guys didn’t have a choice to be bald, and I wanted to honor your journey by making that choice for myself.”  It’s true.  We didn’t have a choice to be bald.  To voluntarily become bald by shaving off all of your hair, like Erika, is very encouraging to see.  The simple act of shaving her head shows her effort in trying to understand and relate to what we, as cancer patients, have to go through.

When I asked what her favorite part about her job was, she beamed, “My favorite part of my job is making lasting relationships with my patient and their families.  Like you guys!  I love that in my job I get to spend large amounts of time with the same families, get to know them and they get to know me.”  Erika easily became one of my favorite nurses from the beginning as she was very easy to talk to, funny, and really understood what I was going through.  She was also one of my very first nurses that first week in the hospital right after being diagnosed.  To my surprise, I found out that she likes being someone’s first nurse after being diagnosed: “I’ve recently discovered that I like being the first nurse any patient has on our floor.”  She goes on to explain, “The tests, the pokes, the doctors, the million other things that are about to happen are all daunting and scary.  I like being that constant among all that change that can keep that family and patient grounded and be that person at the bedside that holds their hand and tells them, ‘I know this is all new and scary, but I will tell you everything that is going to happen and I will be here for you.  We will get through this together.’”  My eyes teared up after letting her words ring in my head.   I instantly clicked with what she told me.  That was me.  The memories rushed back to the day I first met Erika.  I was scared.  I was lost.  I had to go through all the tests and the pokes and the surgeries.  Everything was so new and frightening to me; however, her glowing presence reassured me.  

Her easy-going spirit effortlessly lifted mine even as she administered my revolting chemotherapy; however, that happens to be one of Erika’s least favorite parts of her job:  

"Giving chemotherapy is very hard for me to do; it is a double-edged sword.  I hang the bag of chemo that will hopefully cure, but also cause suffering to my patients.  I know that hanging this bag of chemo will cause throwing-up, mouth sores, pain, and many more things.  While I’m at work, I’m not thinking about that.  I’m just getting my job done there.  It’s when I’m driving home that I start to wonder what’s going to happen to my patients because of what I’ve done that day."

        Unfortunately, all the side effects from the chemotherapy Erika would administer did happen to me.  I strongly dreaded the moment when the nurse would walk into my hospital room wearing protective gloves and smock holding the bag of chemotherapy that would soon be hooked up to my I.V. pole.  Knowing that the chemotherapy was flowing through my body was nauseating in itself.  I, too, would face the side effects of severe leg pains, chronic nausea, ulcerated mouth sores, and no appetite.  I still can’t wrap my head around the fact that something which made me feel so sick and horrible cured me of a fatal disease.  I understand why this part of Erika’s job made her feel so guilty; however, I never accused her of inflicting such a misery on my body.  My cancer and suffering were not anyone’s fault.  I’ve learned to just accept things that happen in life and to be grateful for all the little things.  In a way, Erika and all of the nurses who administered my chemotherapy saved my life.  

However, being a nurse on the oncology floor can be immensely heavy on the heart.  With tears in her eyes, Erika tells me, “It is very hard for me to literally LOSE patients.  That is probably the worst part of my job.”  She goes on to explain, “I get to be a part of people’s lives and sometimes I get to be a part of the end of their life.”  However, Erika still manages to find the ray of sunlight in these dark situations: “In a weird way, it’s still an honor to be their nurse in the very end, because my job in that time is to provide only comfort, only dignity, only peace.  It’s definitely very hard on me and very hard on my soul.”  I can’t even imagine what these brave nurses must go through countless times.  I personally knew about three patients who passed while I was going through my treatment.  That affected me in more ways than one.  That could have been me.  I felt deeply for their families, but also happy that those strong kids were no longer in pain.  That’s part of Erika’s job--dealing with losses.  But “these journeys of facing life and death have rubbed off on [her], and [she is] very aware that life can indeed be short.”

Aside from the hard times, Erika still manages to learn and grow from her deep experiences as an oncology nurse.  Through all of the suffering and pain, Erika has “learned that human relationships can survive anything, and that through times of suffering comes great times of joy and laughter as well.”  For Erika, laughing seemed to be her forte.  Her joy and laughter is contagious as I discovered.  Erika even laughs when she admits to me, “I don’t like dealing with poop.  Hahaha!”  Her bubbly personality finds its niche in the oncology unit since “it’s okay to laugh, even when you’re in the darkest time of your life.”  For me, my main lesson learned going through this journey with Erika was to keep my courage through every obstacle.  If she had the courage to put on a strong face to make me feel better, then I should be able to have that courage to keep fighting.

Unfortunately, most people are usually too scared to visit the oncology unit because it’s depressing.  Erika encourages “that this place is sad at times, but for the most part it’s where I’ve learned to be courageous and to smile through the scary times...kids with cancer are some of the bravest, most special people I know.”  Erika’s job shows to be more than just a job.  The oncology unit is full of sadness and devastation, but also laughter, joy, and courage.  Erika learns from the brave patients every day while striving to return the favor and provide comfort and guidance: “I feel honored to be a part of that time in your lives and try my hardest to bring some joy and sunshine to a very dark time.”

Here's some pictures of me with a few of my favorite nurses taken on my last chemo.  I forgot how bald I was!! :) Although these were tough times, the pictures below still bring a smile to my face.

###Alexis

99.99%

So I just want to share with you about my best friend during my battle with cancer.  This friend went with me to doctor's visits, chemo treatments, and just about anywhere I traveled to.  This friend never wavered in support and truly protected me.  I will be forever grateful for this friend's reliability.  This friend I speak of is nothing other than handy dandy hand sanitizer!  

I honestly carried hand sanitizer around EVERYWHERE I went to help fight off pesky germs.  I never realized how rude people can be with spreading their germs in public: not covering their coughs, sneezes, or hacks, or my least favorite, the walk-by-and-cough-all-over-your-face cough.  I avoided using any public doorknobs or rails, and if I contaminated one finger, I whipped out my hand sanitizer faster than you can say gesundheit!  

I wasn't always a germ-o-phobe before cancer; however, the doctors were quick to tell me that I absolutely needed to stay sickness free while on chemo.  As I briefly explained before, chemo would cause my blood counts to diminish close to zero, leaving me with no immune system.  Obviously it was much easier for me to catch just about anything from hugging a sick person.  What I needed to avoid most was getting a fever.  A fever meant infection, and infection meant I would have to go straight to the emergency room.  I loved the doctors and nurses and all, but I didn't want to be spending anymore time in the hospital than I needed to.  There's no knowing how long I would have to be in the hospital to shake the fever with antibiotics through an IV and close supervision, so you can only imagine how much one of these hospital stays would mess up my whole road map and schedule for my treatments toward remission.

Luckily, I never had to be admitted into the hospital for a fever(thank the LORD!), but we did have a few close calls.  So this is where my gratitude stems from for hand sanitizer ;).  I can't stress enough how important it is for a cancer patient.  Another route would be washing your hands a bajillion times a day, but that wasn't for me.  Instead, I much would rather use the fruity and fun Bath and Body Works sanitizer.

They come in all different colors and scents, and are super compact and travel friendly!  I had one of these suckers in every bag I owned and everywhere throughout the house and car.  These are a great alternative to the sterile and hospital scent of Purell.  

As much as it is important to stay sanitary for everyone, it is even more important for cancer patients.  I know there are some instances that are completely out of our hands(no pun intended), but just try your best to do as much as you can when it comes to your health.  That includes having your close ones sanitize as much as you do!  When I was at home recovering from treatment, my boyfriend came over everyday after baseball practice and couldn't come anywhere near me until he was completely showered and squeaky clean.  My family even knew to be as cautious as they could if they even showed one hint of the sniffles.

So now I am sharing my best friend with you.  May s/he bring you as much support and well-being as my hand sanitizer brought me.

###Alexis

Ps. Here's some of my hand sanitizer collection I've garnered throughout my cancer days:)

nothing but normal

One tip my doctors gave to me that I will pass on to others going through cancer is to live your life as normal as you possibly can.  This includes doing the same things you did before cancer and minimizing the change in your daily life.  Yes, I know this is hard to apply after your life was hit hard by hurricane cancer, but as I discovered, do not let cancer control your life.  Only let it simply be a speed bump down [fill in your name here] street.  I was in the hospital every two weeks alternating between a three day or a six day hospital stay for chemo treatments.  I would be home for about two weeks in between these treatments, and the time away from the hospital was no time away at all.  I still went in every couple days for blood work to monitor my blood counts.  Other issues sent me back to the cancer clinic such as nausea, blood transfusions, hydration, or pain relief from disgusting mouth sores(I'll write more about those later).  When I would first get home from treatment, I would feel disgustingly sick and nauseous from the chemo that I wouldn't be able to do anything but load up on anti-nausea drug after another then become a vegetable from its effects.  Although it was miserable, I still found peace and joy in not being hooked up to an IV and not having my pee measured every time I went to the bathroom.  Conveniently, when I would start feeling better was when my blood counts would go down--practically to zero.  That meant I had absolutely no immune system.  At home, I had to give myself GCSF shots to help raise my blood counts every day until they were at a safe level.  And guess what, no immune system meant no leaving my house.  No being around sick people.  No crowds.  Just the company of my family, and boyfriend, and healthy visitors once in a while.  So once my counts came up, I was back in the hospital as soon as possible to get hit with my next round of chemo treatment.  Yayyyyyyyy........  BUT I had a very small, but much needed and appreciated window of time in my cancer life before my next hospital stay to go out and do whatever, whenever, since I would be feeling good(ish) and healthy(ish).  During these small clearings in the storm, I swear I did more stuff than I did before cancer and tried my hardest to be as active as I possibly could.  I went to the zoo, I went to Angel games, I went out to eat, I went the OC Fair, I went to my senior prom, I walked at graduation, I went to my grad nite, I went to Disneyland, I went to a concert, and most importantly, I made my way to as many high school baseball games as I could to watch my boyfriend play(I would even go on my "bad" days with a bucket in hand just in case).  This is the part where I was so blessed to have my family and friends and my boyfriend to push me to do these things.  I knew my limits (and so did my mom) and I made sure to voice them when I would be out.  My boyfriend has a very, let's say hyperactive personality.  He always has to be doing something and would eagerly drag me along on adventures during my rare good days.  I am really thankful for that.  He constantly reminded me that just because I was sick, doesn't mean I can't have a life and be myself.  What I'm trying to say here is that although my cancer took up a lot of my life, I still didn't let it own me.  I could have easily just sat at home and felt sorry for myself and mourn the life I once had, and trust me I really wanted to at times.  But for those small windows of of time, I felt normal when I did fun things I love to do.  I felt like a superhero pushing cancer to the back of my head to deal with later as I was busy with living it up.  I think this can even apply to any obstacle or hard challenge in anyone's life.  Don't let it own you.  Make sure you have those small windows during your challenge to escape through, because although they're smaller than the room, what's past the window is vast.

Here are some pictures from some of my good days:)

###Alexis

free baldin'

As I continue with posts, one of my main purposes for this blog is to provide help and guidance to other cancer patients out there who are just as confused and scared as I was.  With tips and remedies, I hope to cover every single thing I know about dealing with cancer, especially for young adult girls.  One of the main downsides of cancer and chemo treatments(especially for girls) is the hair loss.  For me, my little teenage world came crashing down when I found out I would lose the luscious locks that dangled all the way down to my lower back.  However, losing my hair became a small feat as I was faced with surgeries, chemo, and lots and lots of nausea.  I just figured hair grows back and I'd try my hardest to rock the heck out of having no hair.  So when the day came to shave my head, I didn't cry, surprisingly.  Nowadays, it pisses me off hearing girls complain about their haircuts.  Last week, it was the makeover episode of America's Next Top Model (I think every girl knows what I'm talking about) and it made me sick listening to the girls literally cry over their hair and get upset if even two inches were cut off.  There are girls everywhere either shaving their heads or losing their hair completely with no choice in the matter.  And to me, those girls, teenagers, and women are way more gorgeous than any supermodel.  Okay.  Sorry I got a little carried away there.  Where were we....yes shaving my head.  The scariest part was when my hair started falling out.  I would just run my fingers gently through my hair and dozens of strands would effortlessly detach themselves from my head.  I had to wear my hair in a ponytail and headband to sleep to keep from more hair falling out during the night.  So I decided to shave it all off so I wouldn't have to watch my hair wither away day after day.  It was surprisingly invigorating.  Not ever in my life would I have done that voluntarily.  I have freckles on my head!!! I never had a chance to see my HEAD! And amazingly enough, my boyfriend adored my beautiful bald head, and to this day claims he actually misses it(but is happy that it's full of hair again).  So screw hair! SCREW CANCER!  If you're going through the hair loss, just own it!  Know that it'll grow back.  And if you're wondering what I wore on my hairless head, I'll write a post soon about scarves and how to tie them(only applies to girls, of course).  But for now, here are some pictures, taken by a close family friend Rebecca Dever, of the day I shaved my head!

My mother was the one who had the honor of shaving my head.  To be honest, I think this day was harder for her than it was for me.

Here's some more pictures of my freckly head after my hair completely fell out.  The best part is being able to draw on it!!  I was privileged to be the subject of a photo project for my friend Kenzie Mitchell, and it was super fun:)

###Alexis

a journey with a promise

My story began on February 17, 2011: the day I found out I had cancer.  The nasty thing is called Ewing's Sarcoma.  It was a huge golf ball sized lump on my left collar bone.  As you may have guessed, something wasn't right and I went in for scans and biopsies and what not to figure out what the heck this alien under my chin was.  To my dismay, cancer had forced itself upon my young, innocent high school life.  So here's my story, through my thoughts during that horrible trial, through what kept me going, through what I went through, through myself just sitting here thinking back about my past life that changed me forever and will forever be a part of who I am.  But as of now, I am in remission.  My last treatment ended on October 17, 2011(go figure the date).  Sorry if this is disorganized and jumbled, but from here on out, I will simply just spill everything out onto this blog since my brain can't hold everything in any longer.  So bear with me, but I think this will be a great journey.  As my mother told me once I found out I had cancer, "This is your journey with a promise."  The journey fricken sucked, but I definitely learned a lot about myself, who my true friends are, the great and mighty power of our God, the power of prayer, and the real importance of having family and loved ones in your life.  And as for the promise, I'm still figuring out what that is...

###Alexis