Friday, December 30, 2011

Life's under no obligation to give us what we expect. We take what we get and are thankful it's no worse than it is.

That quote might sound a bit fatalistic. But it's not, to me.

One year ago, today, my oldest (Lora) was babysitting my youngest (Gabby) for me. Lora told me Gab seemed like she wasn't feeling well, that she was sleeping off and on all day.

Gab had been getting over a cold, for days, I thought. Weeks, probably, now that I'm far enough removed from the situation to really think about it in context.

I had taken Gabby to the doctor a few days before, because of a lingering cough, and some red dots around her eyes. The doctor said the dots were just from the cough. That both would go away.

So many people use New Year's as a fresh start. It seems so clean, a blank slate, to move in any direction you want.

One year ago, this weekend, we moved in a direction I hadn't really imagined traveling.

I spent New Year's day in the Urgent Care, then the ER, then the Oncology ICU, knowing nothing, except that this year was going to be different.

We didn't yet have a diagnosis, a prognosis, a treatment plan.

All we had, was the knowledge that our 4 year old was in danger.
In June, I posted a rundown of a day in Gabby's life - on this particular day, we spent 9 hours in the outpatient infusion center, where Gabby receives her chemo treatments.

I've been following Alene from Journey to Badwater since before this year's Badwater race. When she posted a few months ago about her work as an infusion center nurse, an idea was hatched.

The Day in the Life post was one of my most visited posts to date; I still get emails about it today.

Over the next 5 months, I'll be fundraising for the Pediatric Cancer Research Foundation. During this time, I'll be sharing more of our experiences, as a cancer family, as well as the experiences of those who work with families like us. People like Alene.

Everyone is reached by cancer eventually - that's a shitty fact, but it's true. Not everyone knows how deeply it changes the dynamics of a family, of a person.

It's never been an option for us to quit fighting, to quit being hopeful, or to quit enjoying our lives. That, to me, is what the quote up there really embodies. Is it ideal? Of course not. But life rarely is. Life sometimes fucks with things in ways that are not cute or amusing. But how you handle it, that's really where you have a choice to shine, or to sink.

We choose to shine.

Enough sap. Alene's post:

A Day in the Life of an Infusion Center Nurse by Alene Nitzky, RN

(note: all patients described in this post are composites, to protect patient privacy. The details have also been altered for confidentiality, but this is a typical day and these are real events.)

I arrive for my shift at 7:45 am. I've had my coffee, and a good breakfast that might last until 10:30, read the local paper, glanced at the obituaries to see if any patients are listed, and said goodbye to my husband leaving for work, and gave the dogs their work morning treats. I drop my lunch in the break room fridge, get my stethoscope, penlight, hemostat, sharpie, and pens out of my locker, and I clock in at 7:53.

I walk by the inpatient oncology desk and look at the board, to see how busy the unit is, and whether any of our patients have been admitted since yesterday. It's my last shift before the New Years holiday, and I have scheduled 8 days off in a row. I'm looking forward to my vacation, but I have no wishes to be anywhere else today.

I enter the back door of the infusion unit, drop my water bottle and stethoscope behind the nurses station, and look at my assignment for the day. I say hi to the unit secretary and all of my coworkers. I feel comfortable here, it's a supportive environment, and we help each other get through the day. I've never had a job this good in my life, and I never have a sense of dread coming into work.

Why do I do this? It's an opportunity to be nice to people, those who are at the sickest, most vulnerable they've ever been in their lives. If I can do one thing that makes their day better, makes them more comfortable, or gives them information on how to make their experience better as they are going through treatment, like referring them to a social worker, or telling them what will make them more comfortable from the bone pain from their Neupogen injections, then it makes my day.

Many of our patients come in for chemotherapy or treatments related to cancer therapy- injections, blood transfusions, lab draws, dressing changes, port taps. We also administer biotherapy drugs, immune globulin, and other drugs for patients with immune deficiencies, osteoporosis, autoimmune diseases, but also we infuse antibiotics, which is a good portion of what we do at the beginning and the end of the day.

My work makes a difference, and I know it does without having to be told, and the patients tell me anyway.

It reminds me every day to be thankful for my health, for my ability to do the things I can do, and any troubles I have in my life are really dwarfed when I put them in perspective.

I have to be careful not to get emotionally too close to anyone. There are always certain people you connect with, whether it's sharing mutual interests, their attitude, the things they say or do, their life story, or something. Maybe they are the same age as me, maybe they remind me of my dad or my sister or even myself. We have conversations about all sorts of things. When you get to know the person, after weeks or months of treatment, it's a strange feeling. You become attached in a way, even if you don't intend to. You start each session at a higher level of understanding of the person's needs than you had before.

Before I started in oncology, I worked in ICU. People were sick there, death was a regular occurrence. My coworkers there, and many of the other nurses I know from other units, want to know how I can stand to work oncology.

“Isn’t it depressing?”, they ask.

No, it’s not depressing at all. What’s depressing are the 35 year old diabetics who complain about not being seated right away when they come in an hour early for their half hour appointment, and raid the galley for soda and Oreo cookies. They are getting antibiotics for a wound that won’t heal. They hate having to come in every day for 8 weeks, and when the doctor says they need to extend it for 2 more weeks, they throw a temper tantrum and blame us.

It’s sad when you’ve been on the patient’s team and get to know them, and watch the ones who progress in their disease and either gradually, or suddenly, fade away. But most of the time, by the time they get to that point, you are thankful for the relief they get from a life that revolves around symptom control, leaving no energy for living.

I have two chemo patients today- one is there for stage 4 colon cancer, the other has pancreatic cancer. The colon cancer patient is getting Avastin and Irinotecan. He’s my age. His labs were drawn yesterday. I get his vital signs, check his height and weight, listen to his heart and lungs, ask him a gazillion questions about side effects, nausea, diarrhea, neuropathy, fatigue, life in general, tap his port, and call the pharmacy. I bring him a menu and a phone so he can order something to eat.

The Avastin takes 30 minutes, and the Irinotecan takes an hour and a half. I call the pharmacy, everything looks good to go ahead, and I give him his premeds, Aloxi and Decadron. Before the Irinotecan I will also give him atropine to prevent diarrhea. He wants to know how much longer this chemo regimen can go on, it's cycle 14 and he wants to talk to the doctor, to see what to expect. He's working through chemo, and he goes to work every day. The only reason his coworkers know he has cancer is because he's bald. They didn't know until his hair fell out. He doesn't feel like giving up, but he wants to know how much longer he might expect to keep going on this regimen. And if it's worth it- is it keeping the disease from progressing?

When the chemo arrives from the pharmacy, he's just gotten his meal tray. I gown up, set up the bag on the pump, find my chemo buddy, we double check and get things started. He's going. He doesn't need anything else right now, so I move to the next chair, where the pump is alarming. I hang a flush on the antibiotic to help my coworker. Then I check on my other two patients, who are almost done with their infusions, I can disconnect their lines, flush their PICCs, and send them home.

Lunchtime passes, I turn my assignment over to a coworker so I can go eat, and when I come back a half hour later, the Irinotecan is still going, and my patient is watching TV, having finished his lunch tray. My one o’clock antibiotic didn’t show up, so I help a coworker with her 1:30 patient, who arrived early. My other chemo patient is getting Gemzar. It’s one infusion and he’s done. He likes to be in a bed rather than a chair. His labs were already drawn too, so I premedicate him and he waits. He never likes to talk, and he hates having his port tapped. He doesn’t want cream or spray, he just endures it. After I do my assessment and tap his port, he wants me to pull the curtain. His friend arrived with him, he sits in a chair next to the bed, flipping through the pages of a book while I do my work.

My next patient comes in on the dot at 3 pm. She needs her labs drawn, needs Neupogen, and based on the results of the CBC, might need blood, platelets, or both. Her appointment might be a half hour if the lab is quick and nothing else is needed, or she might be there until 10 pm getting several units of blood and platelets. Today she plays on her Ipad, talking to a dinosaur, which she shares with me for a laugh. The dinosaur talks back. Then she goes back to sending emails. She says, if I didn't have this Ipad, I'd have gone crazy a long time ago. Her cell phone rings, it's a friend who wants to know if she can go skiing this weekend. Probably not. Her platelet count was 8,000 a few days ago, before her last platelet transfusion. I draw the blood from her Hickman catheter, send the tubes off to the lab. On a good day, the results are back in 30 minutes. Sometimes it takes an hour. We won’t know what she needs until we get the results, so she waits.

She was a college student going about her life. She had some dental work done, it didn't heal, and she kept getting sick. Finally she had labs drawn, then a biopsy, and her life was suddenly transformed from a carefree 21 year old one semester away from graduating, who went skiing on weekends and waited tables at a restaurant, was planning to go to graduate school, and now she has little control over her life from day to day. Most of her days are spent sleeping or talking on the phone when she feels like it, and then her afternoon appointments here. Every day. She had to drop all her classes, and graduation has moved from a light at the end of the tunnel, to a hope-filled dream. Her mom moved up here to be with her during treatment. They have an apartment together. Her family lives two hours away. She had to move out of her housing situation with roommates, too risky to be around so many other people with her neutropenia.

Twenty-one year olds should be hanging out with their friends, not worried about whether they can go skiing because if they fall, they might bleed to death.

As it turns out, all she needs is her Neupogen today. She gets a reprieve. You'll probably need platelets and maybe blood in the next day or so, they are trending down, but you're not there yet" I tell her the good/bad news. It's good news today, she won't have to sit there for hours. Maybe tomorrow. I draw up her injection, she chooses her right arm for the poke today, and she's out the door 5 minutes after her lab results come back. On her way out, I wish her Happy New Year. I won't see her until after my vacation. My words sound too casual, though it's likely, with her young age and relatively good health she started with, that I will see her then. Nothing is guaranteed.

My first chemo patient is done for the day. I untap him. He gathers his coat and laptop, thanks me for my work, and I say, “Happy New Year.”

He smiles. “That has a special meaning in this place, doesn't it? This is my second New Year since I was diagnosed a year and a half ago. It's not going to be my last, either.”

He hesitates. “And if it is, well, it is.”

He shrugs, looks at me and smiles, wishes me a happy new year, and walks out the door.

I move onto the next patient, getting Thyrogen for thyroid cancer, before undergoing radioactive iodine treatment the next day. Her cancer is most likely curable. It's a quick injection. I wish her luck with her treatment and a happy new year.

The patient getting the Gemzar is done with his infusion. I flush him and leave him tapped, he has another appointment tomorrow. He’s nice enough, but I get the feeling that saying Happy New Year to him might provoke an angry response. I wish them a nice holiday. They smile and say thank you. I think that was the right thing to say.

I have a break. My last patient of the day doesn't come in for a half hour. And all he gets is a half hour antibiotic, and a PICC dressing change. I stock the galley with cups and coffee supplies, then I stock the chemo cart, and move on to the blanket warmer. After that, I stock the supply carts for the next day.

When my last patient leaves, the charge nurse asks me if I want to go home early. Everything is done, there’s only one patient left finishing his infusion, and then she’ll be done, too. I say yes. We wish each other a Happy New Year, share a hug, and I pick up my stethoscope and empty water bottles, repeating my morning routine in reverse.

I am tired, but not drained. I only worked ten hours today instead of my usual twelve. I know a vacation will be good for me, but I don’t feel in desperate need of one.

It’s seems so easy, but maybe it’s not.

Happy New Year has a lot of meaning in this place. Nothing is guaranteed but hope.

Alene is an ultrarunner and RN in oncology, and works in an outpatient infusion clinic. Her blog is Journey to Badwater


  1. this entry has me in tears (in a good way)

    I have said this before, and I will say it again, you are amazing.

  2. There is so much I want to say about this post but maybe for now I will address only one thing.
    My brother in law was a diabetic. He too ate all the wrong things. I wrote a very angry post about it:
    Months have passed since his death. I had more time to think of what was happening to him. Food addiction is the hardest addiction to fight because one cannot quit food. There is still a lot we do not understand about it but I do know that when you see a diabetic with cookies, it is not that he/she does not know or care.
    My brother in law knew he was dying and yet...

    Beautiful post. Thank you.

  3. Not to sound sappy, but you are awesome and I love your idea. You know I'm going to share it with everyone I know.

  4. Reading this makes me less complain-y about my back pain (which I is temporary and mostly just an inconvenience).

    I didn't realize it had only been a year since Gabby was diagnosed.

  5. That was really good and interesting! I feel like it takes a really gifted person to be able to handle a job like that. It has to be so hard!

    I can't believe it's already been a year. It's been a wild ride. I still remember when all that started happening. I'm so glad everybody has stayed so strong and positive throughout all of this!

  6. Thank you so much for this post. I'm misting over.

    I know I could never work in an oncology unit. God, yesterday we had an adult patient who had just been diagnosed with cancer come in -- she was looking for a PCP because she was having panic attacks. Just seeing her tumors (there was one in the thyroid region and one in her abdomen that was visible through her shirt) and overhearing brief bits and pieces of her conversation with the doctor almost had me hiding in the bathroom, sobbing away.

  7. I feel the same way these other commenters feel- I often complain a lot about insignificant things, when there is SO much more going on and so much to be thankful for. I think about Gabby a lot and hope TODAY is a great day for her.

  8. Thank you for this post and sharing your story and your daughter's story. It absolutely breaks my heart to think of anyone/child going through this. Your post definitely brought tears to my eyes.


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