3Cs: Coffee, Children, and Cancer

A new grad turned pediatric oncology nurses' jump into the fray…

Lessons from Cancer: How My Family Made It

Meet Cameron Von St. James, husband to Heather Von St. James, who despite a “life expectancy” of three months to a year is now a six-and-a-half year mesothelioma survivor. This is testament to how a diagnosis can never really stamp an expiration date on someone’s life. Though many are aware of patients’ struggles, few realize those of the caregivers. This is Cameron’s story…

My wife and I have talked before about a life-changing period of time when she was diagnosed with mesothelioma. It was the most difficult time of my life, but I haven’t really ever spoken about what I went through as her caregiver. When Heather asked me about my experiences, I can only think of the lessons I learned. I hope our story can help others who are going through a similar experience.

Three months before my wife’s diagnosis, we were celebrating the birth of our daughter Lily. My wife and I spent most of our days imagining what life would be like for our new little family. I never thought that such great happiness could be followed by such uncertainty and fear. I remember the day that I sat with my wife in the doctor’s office and heard the word mesothelioma fall from his lips. I remember my wife’s face as she heard the diagnosis. With tears in my eyes, I fell silent, wondering how we were going to get through this.

We learned that the prognosis for mesothelioma patients is almost never good. For the first time of what would become many, we had to make medical choices that would affect the future of our family in the face of emotional upheaval. I didn’t know how I was able to make any decisions in a state of breaking down, but difficult decisions had to be made about her treatment and plan for recovery.

After the diagnosis, I went through a personal upheaval. We had just built a beautiful life together, and now it was being taken away. I didn’t know how to control my anger at times, and I lashed out with profanity and rage in an effort to vent these uncontrollable feelings.  It didn’t take long for me to realize that this wouldn’t help anything, and the last thing my wife needed was to see how scared I truly was. I learned over time to control my emotions. I had to be a rock for Lily and Heather. They depended on me, and I couldn’t show fear in front of them. From that moment on I did my very best to be nothing but a source of hope and optimism for my family.

Every day came with a list of tasks that seemed to go on forever. Not only was I caring for my wife, but I had to take care of everything else too: work, home, Lily and our pets, travel arrangements and doctors appointments, the list seemed endless. It quickly taught me how to prioritize the important tasks and accept help when others offered. We had so many people in our lives who offered to help, and without them, it would have been impossible. I will forever to grateful to each and every person who gave us their love and support during this difficult time.

I had an unbearable period for about two months after my wife had surgery in Boston. Lily had gone to stay with Heather’s parents in South Dakota while Heather underwent mesothelioma surgery, and after the operation Heather flew there to join her.  This left me at home, alone to work and take care of our house.  It was a tough decision to be away from them, but we both knew that I could not provide my family with the care that they needed while still working full-time to support us.  Unfortunately, I only saw my daughter and wife once during this time.

Despite that being the most difficult period of my life, I never regret the decisions that we made. I learned more about myself during this time than I ever have. I learned to be strong despite what life gives you. I learned to accept help from others, and to take comfort in the fact that we could make decisions, no matter how hard they were.  Finally I learned that standing by a loved one through cancer is one of the most difficult things anyone can do, but it can also be one of the most rewarding challenges you’ll ever go through.  I hope that our story can be a source of hope and comfort to those currently battling cancer, and the caregivers who support them.

To read more from Cameron Von St. James, head on over to the Mesothelioma Cancer Alliance Blog. Hear from Heather Von St. James’ herself in her inspiring video, “I Was Given Just 15 Months to Live“–go check it out. Right now. 

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Footprints on My Stethoscope

Image Credit: http://bigfouroh.blogspot.com

My patient was dying. Her skin was becoming increasingly mottled. Cheyne-Stokes respirations had set in. I tried to remain calm as I listened to her lungs and twenty, thirty seconds would go by without a single breath. Congestion was building up in her airways. It was hard to watch.

My charge nurse checked in with me frequently, asking if I was okay. I was not. I shed my own tears in that room as I watched my patient dance in and out of lucidness, embracing family members, kissing staff on the hand before—as if a switch had been flipped—slipping back into a restless state of confusion and agitation that only versed could soothe. Yes, I was losing a patient—but the family—the family was losing so much more. A daughter, a sister, a niece, a cousin, a friend…

What I was dealing with was nothing in comparison to what they had to endure. I had to keep it together in order to support them. I suppose that this is one of the parts of nursing that comes with time, but how can one ever get used to…this?

We changed her into a red shirt. She’d been wearing a pink one that seemed to have appeared out of nowhere—it wasn’t hers. She hated pink; her favorite color was red. These are the things that you learn when you’re up with your patient at 2am watching Cupcake Wars.

Her family whispered sweet everythings into her ear. “It’s okay…” “You don’t have to be afraid…”

A few days later she was gone. To a place where she could sing and dance and drive again. To a place where she could watch the Phillies play from the best seat in the house. To a place without pain and—without cancer. What a great place that must be…

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Reassigned?!?

Image Credit: The New Authors’ Fellowship

It’s my weekend to work, so I come in as usual ready to plow my way thru three twelves in a row. I look for my name on the assignment sheet—it’s not there so I figure I must be on the other side. I go to the other side of the unit and find my name. But instead of the usual patient last names and room numbers it says: “IsntSheLovlei: Unit ABC, 12 hrs.” What?!? I was being floated to another unit?!? Can I tell you how I just cardiac arrested right there at the nurses’ station for a couple of seconds? Had I even been a nurse long enough for them to just throw me to the wayside like that? I was just starting to spread my little wings in the world of cancer and chemo; I was not prepared for this monkey wrench.

So with pterodactyls in my stomach (you could hardly call them butterflies), I put on my famous poker face, gathered my stuff, and quietly headed for the elevator.

Tachycardic, I arrive at my destination, give the clerk my name and tell him that I’m a reassignment from onco. “Oh, right through there…they’re expecting you.” Gulp. I get my assignment, immediately noticing that it was more patients than I’m accustomed to having (I assume my own unit’s acuity to be a bit higher). My inner panic continues to brew. Charge introduces me to everyone, gives me a little tour of the unit, and thanks me profusely for coming to help them out. The knot in my stomach begins to loosen a little. Everyone’s really nice and willing to help—no eating of the young—or of the float. I even see a familiar face, a nurse that was floated down to my unit a couple of times. She was orienting another nurse but promised to check on me. One of my patients was even on meds I was already familiar with—I don’t think I’ve ever been so happy to see cefepime in my life. I was thinking, “Hey! I know that one!”

Of course it was a different unit so I expected them to do things, well, differently. But different doesn’t necessarily have to be a bad thing. For instance, I loved how they did their vitals and assessments at 10, 2, and 6 instead of 8, 12, and 4 like most (if not all) of the other units in the hospital. Being able to come in, get change of shift report, do bedside checks, and have time (especially as a relatively new nurse who now found herself in a new environment) to sit down and synthesize some things—patient diagnosis/background, meds, plan of care, etcetera—without having to jump immediately into 8 o’ clock stuff was a dream. I’m definitely dropping that puppy into the suggestion box on my own unit.

There was also a nurse tech assigned to all of my patients so I already had a right hand (wo)man to help me out. She was only there until 11pm, then I was on my own. But by then I had built up a momentum; I knew where stuff was; the shell-shock had worn off. The clinical resource nurse and the charge nurse from my own unit even called to check on me to make sure I was okay, that my assignment was appropriate, etc. I felt better knowing that I hadn’t been totally forgotten, and a little less like I had been exiled from onco. So all in all, not a bad experience. Will I be jumping at the opportunity to do it again? Probably not. But now I can check that off the list of things I’ve done—I’ve been reassigned (*scary music*)…

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When the Nurse Becomes the Patient

I’m used to taking care of everyone else—my kids, my husband, and now my patients. That’s what I do. That’s who I am. It’s what I enjoy—it’s why I became a nurse.

But ignoring my own health and wellness, or at least putting it on the back burner in exchange for everyone else’s, has started to catch up with me.

Without getting too specific let’s just say I’m seeing more than my fair share of specialists right now trying to get myself back on track. And the co-pays…smdh.

I don’t like it. Especially because I don’t yet know what “it” is. To quote a dear family friend, “It is hard to fight when you don’t know your opponent.” Truer words were never spoken. She goes on to say that although her own diagnosis was devastating, “It was great to know I was not crazy and there was an actual thing that was wreaking havoc in my body.” Well I cannot wait to finally find out what my “thing” is so I can KICK. ITS. ASS.

But for now I have to turn a negative into a positive, and the silver lining is this—this can only make me a better nurse. I’m on both sides of the fence. Not that we’re not all patients from time to time, whether it’s for a well visit, or maybe a stomach bug, but this is a little different and more in-depth. Though I’m not inpatient or totally out of commission (knock on wood), all the doctors, the consults, the tests, the crappy days, the “what ifs” (which only intensify if you’re driving yourself nuts scouring the internet for answers)…trust me I get it—in a slightly different way than I did before.

TO BE CONTINUED…

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Happy Pediatric Hematology/Oncology Nurses Day!

Image credit: http://www.aphon.org

May your commute be without traffic.

May parking spots be plenty.

May your assignment be manageable.

May you be able to eat and pee.

May pharmacy send your meds/chemo on time.

May your central lines flush fine and have great blood return.

May your two-year old patient not decide to disconnect his central lines—while they’re infusing continuous cytarabine.

May your patients be without emesis (especially after you just inserted a fresh NG tube).

May there be no CAT calls, codes, or other emergencies.

May you handoff your whole assignment to one nurse instead of three (don’t you love when that happens?).

Or better yet—may you be OFF today! :-)

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Go With Your Gut

Image Credit: blog.lib.umn.edu

As a new nurse, when things go awry I often question myself first—maybe it’s me, is there something I’m not seeing? Or sometimes there are certain concepts I just can’t wrap my new nurse brain around. For instance, kids on continuous nasogastric feeds—just when exactly are you supposed to check their gastric pH? If you stop their feeds at any random point aren’t you just basically aspirating and testing the pH of the feed itself? But I have found, just as there’s an app for everything—there’s also a hospital policy (albeit usually a long one) for everything as well. Moving on…

So I had a kid on an opioid PCA—Tommy Tucker. He (or his parents since Tommy was just a toddler) weren’t bolusing him much, but he was still getting a basal dose. Tommy was on a continuous pulse ox overnight and seemed to be sitting around 96% on room air (and had been around there when they spot checked him throughout the day as well). Which was fine. But I just had a feeling that Tommy was gonna spike a fever (though we never say the “F word” aloud). His temps were dancing a little too close to that edge, he felt warmer than he was reading, he was irritable and had been tired and lethargic all day according to mom and dad. So I was already extra eyeballing him. Around 3am Tommy starts to desat to like 92, 93%…and sort of hovers there. My antenna goes up (or rather my right eyebrow—sorta like The Rock). So now I’m sitting him up, jostling him around a bit—basically pissing him off a little trying to get his sats to come up. His respiratory rate had been creeping up and he was taking these quick shallow breaths but no retractions. He was a little tachy and had been all day but then again he’d been intermittently febrile. It may have just been that Tommy was about to spike, his hemoglobin was also a little low that morning so he probably would need blood after that morning’s labs came back but I still felt that I needed another set of (more experienced) eyes in the room. So I called my charge nurse and the resident to come have a look-see. The res thought basically what I did and also felt that the opioid was probably contributing to his shallow breathing however “just in case it’s not” she asked me to keep an extra close eye on him. My concerns were heard and discussed, and everyone was on the same page. Go team. Most new nurses are afraid (or let’s just say less than eager) to call the residents/attendings, etc. when they have concerns or questions. My slogan—”when in doubt—call ‘em out.” It does get easier, and they don’t bite—well most of them anyway.

My advice is to always go with your gut. So what if you jumped the gun and your patient was fine and now the resident is irritated because you woke him up from his nap in the on-call room—he’ll get over it. It’s all part of the learning process, developing that “critical thinking” they talk about so much in nursing school. But the worse case scenario—if you don’t call, and you should have—could be much worse not only for you, but especially for your patient.

“Trust yourself. You know more than you think you do.” ~Dr. Spock.

Till next time…

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EMRs…Room for Human Error

Image Credit: waynefarley.com

We live in an age of technology. Having a computer with internet access is a requirement for homework completion these days—I asked my 12-year-old son and he didn’t exactly know what an encyclopedia was. But I bet he could describe—in detail—smartphones and tablets, Bluetooth and wifi, voice-enabled this or that, and GPS-powered watches that track your workouts and sync with your sneakers. Even my two-year old patients have iPads. Want to know how to survive an earthquake?—there’s an app for that.

I’m not complaining—I love my gadgets. I like being able to sync my life over “clouds.” I want to be able to start my BMW (when I get one) with my iPhone. With technology saturating so many facets of our lives it was only a matter of time before it inserted itself into healthcare. Enter the electronic medical or health record (among other technology). Besides the fact that I find written documentation to be lengthy and often redundant, I like EMRs’ simplicity and cleanness—click here, check there…with the option for free form text when the situation necessitates it. There’s also no illegible handwriting to decipher—big plus there. We all have a colleague or two (and it’s not just the docs!) whose handwriting looks more like hieroglyphics. EMRs not only allow us to get rid of all the paper charts and MARs and such, but they allow us to more easily share information between healthcare providers and with our patients, scheduling, billing, everything you need can be built in to be right at your fingertips. But EMRs can have their drawbacks…

At the end of the day computers and software—are just a bunch of codes in a machine. We tell them what to do and well, they’re subject to human error via us being behind the wheel.

Which brings me to the story of Jack and Dr. Jill. Little Jack was ordered 200 mg voriconazole every 12 hours, scheduled for 0800 and 2000. Around 1830 one evening Dr. Jill decided to increase Jack’s dose of vori. She “ends” the current order in the EMR and creates a new order for Jack to receive 300 mg of voriconazole every 12 hours, scheduled for 0800 and 2000. No biggie right? Wrong-O. Jack’s 2000 dose for that night essentially disappeared from the eMAR (and subsequently did not show up as a “due med” for Jack to his night shift nurse), as the order was typed in to start at 0800—which would not occur again until the next morning. In any event, the omission was caught a couple of hours later, Dr. Jill created another order—this one with a start date of that night, and little Jack got his vori a little late. No harm done, and a lesson learned—be careful what you type. The computer reads things literally—if you type for a med to start at 0800 and it’s 1830, it’s not going to start until tomorrow. Doses can also potentially be “lost” when meds are retimed—maybe an antibiotic was to be given for seven days and retiming the doses bumps a dose to an eighth day causing that last dose to sort of drop off. So there are still a few kinks (at least within the eMARs) to be worked out…

Maybe vori being a couple of hours late isn’t that big a deal but in oncology some of our meds are a little more timely. I’m thinking leucovorin after methotrexate, or mesna after ifosfamide timely. *Shivers*

What has been your experience with EMRs? Does your facility have any practices in place to help decrease these types of “near-misses?” Is there a way to build some type of flag or safety net into the EMR itself to catch these? Sharing is caring. For some additional food for thought check out Hannah McCaffrey’s article, Technology Induced Errors a New RN Concern, on DiversityNursing.com.

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Don’t Be a Sally Shortcut

Image Credit: The Leadgenix Blog

One of my Clinical Level IV’s often has a “safety tip” at the end of her emails. One that caught my eye and that I really like is “Culture is what we do when no one is watching.” Well isn’t that one of those things that makes you go “hmmm?” Are you really scrubbing your hubs for a whole 15 seconds and then letting them dry for a whole 15 seconds even though your preceptor is no longer breathing down your neck and your patient’s ever-vigilant mother is taking a much needed nap? Are you performing hand hygiene in every one of what WHO in their Hand Hygiene: Why, How & When? refers to as “Your 5 Moments for Hand Hygiene?”—even if that means Purelling your way into your next patient’s room even though you know you just Purelled your way out of the last patient’s room less that 15 seconds ago? I do—and I have the impaired skin integrity to prove it. :-/

So in the words of Beverly Sills, “there are no shortcuts to any place worth going.” Especially if they can lead to nasty healthcare-associated infections such as the “Big Four” (bloodstream, surgical site, and urinary tract infections, and pneumonia). HAI-free is the way to be…

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Difficult Situations, Difficult Conversations

Image Credit: makingovermomma.com

April May was a preschool-aged little girl with a solid tumor whom I cared for over a weekend of night shifts. Most people think that night shift is painfully slow and that the patients (and sometimes the staff) sleep all night—well not in my world. It’s actually one of the things I like about working nights though. Without all the extra hubbub of day shift, you actually get to spend more time with your patients, listening to their stories, holding their hands, really being able to be present, and in this case—helping them to say goodbye.

I spent a lot of time in April’s room. At times I felt as if I was somewhat neglecting my other patients, but it was night shift, and (thankfully) they were actually sleeping peacefully. But just like the triage of patients in the battlefield (I guess we call it “prioritization” in nursing”)—April needed me more right now. We worked hard throughout the night getting her pain under control, frequently adjusting her PCA. It was hard to watch; and it seemed so unfair for someone so small, so new to the world, to have to go through this. I felt frustrated and somewhat helpless, torn between mad and sad, as I struggled to keep it together and be there for April and her family.

I admit one of the things I have major anxiety about as a new nurse (other than fancy chemo protocols and antibody therapies) is end of life. What to do, or not do…what to say, or not say. How do you respond to some of the questions parents/families ask—”How many children have you watched die?,” or from your patients—”what will it feel like/will it hurt?” Does the family want you in the room or do they want their space? You don’t want to be intrusive yet you don’t want them to feel abandoned either. It’s a delicate dance that’s bound to be different with every encounter. Medscape offers some good tips from Cyndi Cramer, BA, RN, OCN, PCRN, in an interview, How to Have Difficult Conversations With Patients, Families.

Monday morning at change of shift, mom sleepily thanked me for everything and asked me when I would be back. I responded that I would be back on Wednesday night. April gained her angel wings Tuesday night.

Yes, cancer sucks. Really bad.

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Deer In Headlights

First days are hard. You don’t know anyone. You don’t know anything—like not even where the bathrooms are. I wondered if they would look at me as if I had three heads if I asked. I could just hear it now: “Bathrooms?!? Ha!—nurses don’t get to pee! These new grads…”

The first couple days of new hire orientation usually consists HR stuff—benefits, parking, the “why we’re so great” speeches. However, since I was not a new hire but an internal transfer, I got to bypass all the fluffy stuff and go straight to my unit to start shadowing. After arriving extra early to make sure I wasn’t late (or maybe it was because I couldn’t sleep anyway), I nervously made my way to the unit, introduced myself to the clerk, and asked for the charge nurse. And so it began…

Eight hours later, I was totally overwhelmed by it all. Nursing school clinicals do not even scrape the surface of preparing you for what I had just walked into. Coming from where we were barely allowed to touch IV fluids to being dropped in the midst of patients with all types of lines and ports and catheters oh my. Though I managed to keep my feelings neatly tucked inside my scrub pockets, inside I was panicking. What in the world did I sign up for?!? Was I going to be able to pull this one off? This wasn’t pulling a rabbit out of a hat—this was more like pulling an elephant out of a Louis Vuitton bag.

I tried to rationalize with myself that this was normal, first-day-on-the-job anxiety. And after all, I was going to be working in a specialty—oncology—and you don’t get to focus much on specialties during general nursing programs. But I just felt so unprepared… Just the medications alone—what can and can’t be run with what, run through what, run when, run over how long…OY VEY. It’s truly an adjustment to go from the school environment where you were the top of your class to feeling like you don’t know squat. Sheesh.

I’m just going to take this one day at a time. Look at it this way—I know more than I did yesterday…

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