What does a patient navigator do?

What do you do?
Believe it or not, I get this question a lot. “What does a patient navigator do?”

I’m the person that takes all the stuff that gets in the way, out of the way, so you can get the care you need.

I used to be a runner. I didn’t do hurdles, but I remember always thinking, how do they do that?

Imagine us standing at the starting line, staring down the track at the rows of hurdles. I know you’re wondering, “How do I get over these?” But then you hear me say, “Wait a second,” as I walk down the track and remove each hurdle before walking back to the starting line so we can walk down your path together.

But what does that really look like?
When I become your patient navigator I can see the clinic schedule as well as what drugs you are taking. This allows me to populate my calendar with dates I know, from experience, you will most likely be experiencing side-effects. In my opinion, side effects can be one of the most scary things...what’s “normal” and to be expected and what’s not?

We’ll talk about your treatment experience. If necessary, we’ll get you back into the doctor, which starts with another phone call I make to your doctor’s nurse.

Going through any change alone, let alone treating your cancer, is tough. That’s why I’m here. Don’t be afraid to call. I can help you work through the obstacles but I can also just talk. Sometimes it’s nice to just think out loud with someone. That someone is me.

Part II: Five strategies for coping with fear of recurrence

In my previous post we talked about the fear your cancer will come back. If you missed it you can read it here (click on this link).

Strategies to cope with fear of recurrence include:

• Talking with your health care provider about a customized follow-up care plan based on your diagnosis and treatment.
• Gathering reputable, evidence-based information. Your health care team can help identify what symptoms to monitor and what not to worry about; every ache does NOT mean the cancer has recurred.
• Reducing your stress level. Different folks find different strategies helpful – experiment with a variety of methods (e.g., walks, yoga, gardening) and create a toolbox of calming thoughts and behaviors.
• Understanding that fear of recurrence is normal – you are not “crazy” for feeling fearful.
• Getting help.

Although fear of recurrence is a completely normal response, that does not mean you need to suffer through it alone. If the emotional upset interferes with what you want to be doing and thinking about, help is available (e.g., individual counseling, support groups, etc.). If you had diabetes no one would suggest that you simply will your blood sugar into a normal range. Cancer can be an isolating enough experience; you need not suffer the emotional roller coaster by yourself. Fear, anxiety, and depression can be treated and the quality of your life improved.

Many cancer survivors report that as they work through the distress, they feel renewed vigor, have a greater appreciation of life, improve their health behaviors, reassess their priorities, and experience a greater sense of “being in the moment.” Providence Regional Cancer System has resources and support to help you navigate fear of recurrence.

• Combating End of Treatment Stress
• Cancer Transitions Program: Have You Just Completed Active Cancer Treatment
• Survivorship Evenings & Free Resources

Your treatment is over? ... but we're still here

A diagnosis of cancer and the subsequent treatment can feel overwhelming. The expectation is that when treatment ends, life will get back to “normal.” The days wind down and it is finally the last radiation treatment and/or chemotherapy infusion. You and your loved ones may expect that you will be immediately ready to jump back into your pre-cancer activities at 100%.

Surprisingly for some, ending active treatment is not the end of the cancer journey. Indeed, when treatment ends you may finally have the physical and emotional energy to start processing information and feelings that were too threatening to contemplate while rushing from doctor appointments to phone calls with the insurance company. You may feel abandoned and unsure of what to feel and do next. The transition from cancer patient to cancer survivor can be very challenging.

Some cancer survivors report that ending treatment is more stressful than the initial diagnosis. Although surgery, chemo and radiation are not pleasant, they feel like very powerful weapons. When they end, you may wonder how successfully you will be able to keep the cancer at bay. Furthermore, you may still be experiencing symptoms from the treatment such as fatigue and neuropathy; they do not end the moment you walk out of the cancer center on the last day of treatment.

You may feel inundated with a mountain of tasks that were put off while the treatment was ongoing. Unfortunately, the supportive folks who gathered round during the acute phase of your illness usually retreat during this transition time, thinking you do not need help anymore. You may even be told, “What are you worrying about? You’re done!”

You are not “done.” I would argue that the time when treatment ends is just the beginning; the beginning of processing one’s experience and starting to heal physically, emotionally and spiritually. And even if you are not cured of the cancer, healing is possible.

For those of you who have finished treatment, what challenges have you faced in making the transition from patient to survivor? Do you have any coping strategies you have found helpful?

Providence Regional Cancer System has resources and support to help you navigate through this transition.

• Combating end of treatment stress
• Free resources

A little lotion and a lot of hope

Now that we’re finally getting some sunshine in Western Washington, I’ve been reaching for the suntan lotion more frequently.

Slathering it on, especially for the first time each summer, always reminds me of winter in Ohio when I was 13 years old.

It was then, on January 25th, that I learned I had cancer. I lived in Central Ohio where winter weather was usually less than pleasant. Combine that with the numerous trips I would soon be making to Children’s Hospital hematology/oncology clinic, and that winter was truly grim.

One of the things that kept me going was the hope that I’d be well enough to join my family on our annual Spring Break vacation to Sanibel Island, Florida. I loved Sanibel – we had visited the island every year for five years in a row.

Best known for the amazing array of sea shells that wash up on its Gulf Coast beaches, Sanibel boasted other treasures, too. Along the shore we would watch for dolphins or hike to the old lighthouse that was an island landmark. And driving through the island’s wildlife refuge, we looked for exotic birds as well as alligators sunning on the banks of the inland waterways.

Our Sanibel vacation was scheduled for end of March. Before that date some of my most intense courses of cancer treatment were scheduled. During February, my first full month of treatment, I visited the cancer clinic three times a week for chemotherapy. For three weeks in March, I went to another hospital in town to receive daily radiation therapy.

The chemo in February made me feel pretty awful. For most of the day, I just lay on the couch sleeping or watching TV. My only breaks from reality happened during trips to the bathroom. It was there that my mom stashed the suntan lotion under the sink.

Whenever I was in the bathroom, I’d pull out one of the bottles, unscrew the top, take a deep whiff and pretend I was lying in the sun on Sanibel. I’d also rub some lotion on my hands so I could continue to smell it, and dream, once I was back on the couch.

My long-ago visits to smell the lotion have made it into family lore – including my current family of three children and husband. My kids think it’s pretty funny that mom used to hang out in the bathroom just so she could sniff suntan lotion.

Yet for me those little pick-me-up trips – and my visions of Florida sunshine – helped get me through those grueling first months of treatment. And, I’m happy to report, I did get to go on that vacation to Sanibel Island.

What about you? Do you have a memory that you go back to, helping you through the tough times?

Coping with cancer paranoia

As a cancer survivor, I worry about getting cancer again. But I worry even more about my kids getting it. When my first child, Will, was ten months old I noticed tiny red spots on his arms. In a panic, I rushed him to the pediatrician. (Red spots on my legs – which meant my blood wasn’t clotting properly – were one of the first signs of my childhood leukemia).

The doctor reassured me that Will’s spots were harmless. He also reminded me that cancer in children is really quite rare. Rationally I knew he was right, but I also knew better than most that – yes – it may be rare, but it does happen.

My next scare happened a few years later with Will’s younger brother. My husband and I noticed a lump on Jonathan’s lower left leg. I googled “kids, lumps and cancer” on the internet. Sarcoma came up – a cancer of the soft tissue. What I read about sarcomas in children was not good. My stomach started doing somersaults, and the rest of me felt like crumpling on the floor and pretending this wasn’t happening.

We took Jonathan to the pediatrician, who wasn’t as reassuring as he was with Will. Instead he referred us to a surgeon at Children’s Hospital. When we saw him, the surgeon couldn’t immediately diagnose the problem, so he recommended we bring Jonathan back for testing.

After a long week of waiting, an ultrasound showed no sign of cancer. The lump was, weirdly, caused by an “unidentified foreign object” – possibly a splinter of wood – that had lodged in Jonathan’s leg. Since there was no infection or pain, he would not have to undergo surgery or treatment…big sigh of relief.

With the latest kid crisis behind me, I was free to leave the hospital. But I wasn’t free of my cancer paranoia. My kids, unfortunately, aren’t the only recipients. My husband has been victim to it, and if my parents, brother and nieces lived closer, I’m sure they would be, too.

Not surprisingly, I also turn these fears inward and worry about getting cancer again myself. Any odd lump, spot or pain in my body can send me into high-anxiety mode. I went online and typed in “cancer paranoia” to find out if others experience this, too. Many results came up. Some were from people who’d never had cancer and were terrified of getting it; others were from survivors who’d had it and were terrified of it returning.

I couldn’t find anything about transferring cancer paranoia onto family members, but I’m guessing I’m not alone. Fortunately, in my own family, my husband (who’s known me for 23 years) has long since learned to deal with my random moments of paranoia. And my kids are still too young to notice when those moments occur. As for me, I’ve come to realize the paranoia is something I’ll likely deal with, to some extent, for the rest of my life. I try to keep it in check and not let it impact me or family members too much. It’s just a residual effect of having cancer and probably not something I’ll ever be able to shake completely.