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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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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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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