Nurse navigator guides fellow cancer patients

When Shondra Nelson speaks with patients at the John B. Amos Cancer Center, her heartfelt compassion comes so naturally.

That’s because Nelson, a thoracic oncology nurse navigator, is fighting the battle of her own life as she works tirelessly to assist those who are experiencing the same at the Columbus facility that opened in 2005.

Nelson, 39, who administered chemotherapy infusions to patients earlier in her career, was diagnosed with cervical cancer nearly a decade ago. It now has spread to her lungs, with a draining round of chemo wrapping up in February.

Still, the Columbus native and Phenix City resident very much prefers to focus on the needs of the lung cancer patients who visit the center for treatment of their own. She takes pride in navigating, or guiding, them from an initial diagnosis to ringing the “Hope” bell in the center’s lobby, signifying the end of treatment and the accomplishment of survivorship.

In between those moments, Nelson, a wife and mother of four, helps patients with appointments, prepare for treatment, understand the medications they’re taking, and often simply acts as a sounding board to alleviate the confusion, stress and fear, often just by listening. It’s a job that she cherishes each and every day.

The Ledger-Enquirer visited recently with Nelson to discuss her job, the emotion it generates, her own illness, and how she works to keep the patients at the Amos Cancer Center — owned by Columbus Regional Health — on the path to recovery and a longer life. She is the first lung cancer patient nurse navigator at the facility, having started in that position two years ago. She has been in the oncology field since 2010.

This interview is edited a bit for length and clarity.

Q. Describe your job and what you do.

A. I am a nurse for all of our lung cancer patients. So I don’t work for any one specific physician. I’m more of a patient advocate, and I work with all of the physicians and offer supportive care. Anybody who needs anything, I kind of navigate the patients through that process.

On a patient’s first visit, I try to get in there before the doctor comes in. So the nurse will come in and assess them. I’ll slide in and let them know who I am, what I am, give them my information and slide out. Then I’ll follow up with them periodically after that, especially right before chemo, right after the first chemo, just making sure they’re getting what they need, getting where they’re going, making sure all of the tests that need to be ordered are ordered, and just trying to make sure that they seamlessly are flowing through and getting what they need.

Q. From start to finish?

A. Yes. From the time they are referred to us and I make initial contact with them until survivorship.

Q. How did you get into this field?

A. I had cancer in 2007; I started out with cervical cancer. I came to nursing kind of late. I went to school for nursing here and there but never really completed it. But after 2007, I went back to school and I knew that’s what I wanted to do. Originally, I didn’t want to do oncology. I didn’t want anything to remind me of the experience I had. That’s because I ended up with a surgical infection that put me on the oncology floor very early in my own treatment, and I didn’t want to have anything to do with it. But I went back to school for nursing and I told my nursing supervisor I did not want to do clinical oncology ... but that’s where she put me.

Q. Why did she do that?

A. I think she was really good at kind of forcing you to step out of what you thought you wanted, and putting you into a position to make sure you weren’t making the wrong choice. So I did my preceptor (portion of her education) there. Then I came across a young woman who had cancer and was unfortunately end stage. At that time, I didn’t have chemotherapy. But just being able to sit with (the woman and her family) and understand where they were, the struggles and worries about leaving family behind, and were you a burden on somebody – just understanding where they were — it made me want to stay in oncology. And I did, and I just kind of continued on. I originally wanted to be a NICU (neonatal intensive care unit) nurse, and I’m very glad I didn’t.

Q. When did you develop lung cancer?

A. It’s actually cervical cancer, and this past year we found out that my cervical cancer had went to my lungs.

Q. What does that mean for you, continued treatment?

A. I’ve already had six cycles of chemotherapy, and I finished that Feb. 11. Now we’re just monitoring to make sure that nothing jumps up. It changes. I was a stage one and now I’m a stage four.

Q. That has to be such an emotional experience.

A. It is, but I work with some fantastic people. I happen to be at the right place at the right time of my life. I work with Dr. (Peter) Seirafi, the thoracic surgeon. He actually did my lung surgery and I did fantastic, and I was on the floor that I worked on for a few years. I got chemotherapy with my friends that I worked with in infusion. So I was filled with a lot of support.With my patients ... when they come in here and they see me with my hat on or see me with my new hair, then they can kind of settle down a little bit and realize that I do understand, that I do get it.

Q. How many folks do you see and assist on average?

A. It depends. We can have 10 new lung patients a month. We can have 30 new lung patients a month. Some patients need me a little more than others. Some need you at the beginning when chemo or radiation’s starting. Some patients are good and it’s the family that needs a little more supportive care. We’re here not just for the patients, but also for their families and friends, too.

Q. What do you help them with?

A. If they’re getting chemo or if they’re getting radiation … Some of our patients get one or the other, some get them both, some get them at different times. So we just anticipate the regular side effects and give them a heads up. They’ll hear us repeating ourselves constantly because we want them to think, oh, she did tell me that can cause diarrhea, or she did tell me that might cause some skin burns. That way they’ll be triggered to call us back. And it’s helping them with financial support, transportation, making sure everybody’s got good nutrition.

At least for what I do, it’s a lot of supportive care, like if they ask: I’m getting chemo tomorrow, can I take my blood pressure medicine before I come in? It’s hard to call a doctor’s office and ask for that one thing and wait for the nurse to call you back. They can call me directly and I can advise them on what they should or should not do.

Q. They call you on your cell phone?

A. Some patients have my cellphone number. A lot of them email me or call my office.

Q. Technology is a big help I would guess?

A. Yeah. We have some patients that do email. Most tend to call. I have a few that text. It really depends on what they’re comfortable with.

Q. What’s a good age range of the people you help? Are some of them younger?

A. We don’t have too many young lung cancer patients. We do have some that are in their mid-40s. Most are in their mid-50s to 60s and up. We do lung cancer screening with Dr. Seirafi. That starts at age 55, so we are catching a lot more lung cancers and potential lung cancers. The good thing with that program is if they come through us, I screen them. If there’s any suspicious areas we refer them to Dr. Seirafi, he follows up, and if that is a cancer, they’re already on my radar. So by the time they come back here, they’ve already spoken to me, they already have a familiar face, and we get them in and moving (through the system) very quickly.

Q. Is that a routine type of screening?

A. If you’re 55 or have a 30-pack-year history and have not quit smoking longer than 15 years ago, yes, we screen them. Medicare covers it, a 100 percent preventive service. And they just passed that last year, so we’ve really seen a pickup this year.

Q. So what is your schedule like? Are you here during the day?

A. Yeah, Monday through Friday, 8 to 4:30, or whenever. (laughs)

Q. You get calls in the evening?

A. I do. I have some special patients that may need a little more care or a little more assistance. So some of them have my personal number.

Q. It seems as if you bond with the patients and it can be emotional for you.

A. Yes. Here you get to know the patients. You get to know their families. It’s more of a friendship instead of a business. I mean, I love bonding with my patients. I have patients who I become very close to them and their families, even if they move away. I love what I do, and I love, love my patients. And, hopefully, they love me; at least they tell me they do. (laughs)

Q. On the surface, it seems it can be a tearful job at times. Does that happen?

A. Certainly. Of course, we deal with a lot of loss, and lung cancer unfortunately is not one of those diseases that we see a huge cure in. But we are making strides to make it more manageable, more of a chronic disease instead of a death sentence. We just have to learn to manage the symptoms, the side effects of treatment, so we have quality of life. That’s what I focus on is the quality.

Of course, it’s emotional. But in anything, even in death, if I can help ease a passing (of someone), or I can help a family member just by being there, or just by letting them know what to expect, then that’s a positive.

Q. Do you try to keep things upbeat as much as possible and laugh at times, because laughter can be a tonic?

A. It is, and there is a time and place for everything. Sometimes you just need to be there and be still, and sometimes that’s just as helpful as laughing. I think as long as they know we’re here, that we support them, that I understand, that I’m invested in them as a person, I think it works out.

Q. What’s the most challenging aspect of your job?

A. Because of my personal investment and my (health) history, when the patients come in, I like to see things moving really quick for them. I don’t like the ball dropped. I don’t like it to seem like it’s dropped. I like my patients to come in and flow, with no problems, and just breeze through. As far as challenges, we do pretty good here to get that done. But it’s just an added pressure for me to make sure that is getting done, and sometimes I may drive the doctors crazy. I may say this patient has got to get seen, or how come this patient hasn’t started chemo. (But the doctors) know what they’re doing.

Q. What do you enjoy most about your job?

A. When I can see some relief that I brought to the patients. When I know something has been stressing them and that they may have lost sleep over, I’ll say: You know what, let me handle it and I’ll get back to you, and I solve that problem.

Q. How do you know they’re relieved?

A. They may hug my neck. They may give me a call. One of my patients, when I see her, she cries and gives me a hug every time.

Q. You probably get a bunch of hugs.

A. I get a lot of hugs. (laughs) … When I became sick, I didn’t tell my patients because I didn’t want them to think about me. I wanted them to focus on themselves and getting better. But when I had to share the chemo room my first day, I had a lot of people checking in and just seeing if they could come in and visit with me. That was pretty good. (tears up) And all of my physicians, they stopped by to see me. It’s really nice.

Q. So you do see losses, patients who don’t make it?

A. I see a lot of losses, yeah.

Q. Do you attend any of their funerals, which I take is not part of your job?

A. Sometimes we’ll go to their funerals, sometimes we’ll just go to visitation, or sometimes I just make calls. Or some of our patients go to hospice, so I meet with them there.

Q. Is it tough to stay upbeat and positive with all of that part of your life?

A. You know, I think it’s a choice. It’s a choice for anybody. You can wallow in self-pity or you can choose to pick out the positives, and I choose to pick out the positives. But I allow myself to have some down days. I’ll give myself 24 hours. I’ll tell my family: Today is not a good day. I’m just going to leave you guys alone, you leave me alone, I’ll be back tomorrow. And they understand that.

Q. Do we need more people like you, navigators out there?

A. Absolutely. We’re looking to get a navigator for each cancer site. We did have a breast navigator. She has moved on and we miss her dearly, and we’re looking to fill that role. But just to know that there is a person who focuses on your type of cancer, who has your back, patient satisfaction goes up.

Q. What skills do you need to be an effective navigator? Organizational and people skills come to mind.

A. You have to be organized. You have to understand that if you are (a person who has the mindset) I’ve got to start A and I’ve got to complete A before going on to B, you’re never going to get through this. That’s because you’re constantly going a hundred different directions. You can’t complete one job before you start another. And you have to have a lot of compassion. You’ve got to have a lot of patience. And you’ve got to be able to flow with a lots of different types of people. Everybody’s different, the way they handle grief and stress. Their beliefs may be different. So you kind of have to be on an even keel.

Q. How about the future, is this job where you want to be, or is there a career ladder for you?

A. I teetered with going back for nurse practitioner several times. But I’m comfortable with what I do. I like the physicians I work with. Dr. Seirafi has taught me so much. I truly enjoy what I do.

Q. And you feel needed? Folks do need you.

A. Yeah. Even if they don’t say thank you, I still feel accomplished. And even on those worst days when you think ‘I don’t matter at all, nobody would miss me if I’m gone’ – because everybody has those days – and then that one patient just says thank you, then you’re back on again.

Q. That’s all it takes is a ‘thanks’ – and a hug?

A. And a hug ... it will seal the deal. (laughs)

This story was originally published June 11, 2016 at 7:22 PM with the headline "Nurse navigator guides fellow cancer patients."