They’re called navigators; I call them angels

The feeling of being in control of my life comes and goes these days. Tough for someone used to having full control of every minute in her day. Things are settling down a bit now and it’s hard to remember, much less describe, the two days that followed my MRI on Weds., April 29. Two days before the weekend, two days in which to decide what to do next, who to call to get which records sent to whom, two days in which to make appointments (with five different doctors in two different locations almost 50 miles apart). And while no one was saying it was an urgent situation, nobody wanted to waste time. The first doctor had said whatever decisions were made, treatment should begin within four to six weeks. And several weeks had already passed. But hey, no pressure … 

I had to schedule appointments down at the CU Cancer Center to see doctors for the second opinion I wanted. A daunting prospect considering what a major university medical campus is like with its multiple hospitals, schools, centers, and departments. But luckily for patients, there are angels in the system. Angels called nurse navigators.

It started with the “scheduler” for the surgeon I’d seen first (that’s what he called her but she’s a navigator if there ever was one). She gave me the name and number of the navigator at CU who would handle everything at that end. One call to one woman who scheduled my appointments with three different doctors, coordinated the transfer and receipt of all necessary records from the first doctor, and easily and patiently answered every question I asked. The first few times I called her, she answered the phone herself. That’s a miracle right there. A few other times I got her voicemail — directly, not after wading through a mind-numbing menu of options — and got a call back within an hour or two. It was as though I were her only concern, her only patient. And yet I knew she must have been doing the same thing simultaneously for dozens of people.

By the time I got back to the first navigator (she and the first doctor are located at a hospital in Louisville, halfway between here and Boulder) on Friday to find out who to call in Boulder, my emotions were fried. I was almost in tears. She quickly offered to schedule the appointments for me and at that point, I was only too happy to let her. She called back a little later with the dates, times, and names of the doctors.

When I finally got off the phone for the last time Friday afternoon, I was totally exhausted but also greatly relieved. Things had gotten done, items had been checked off my list. I had an appointment the following Tuesday, May 5th, at the CU Cancer Center, with all three of the specialists who would be handling my case — the breast surgeon, the medical oncologist (chemo), and the radiation oncologist. All in one place, at one time. I never imagined that could happen in such a huge institution, but it did. And I also had appointments with the two doctors I needed to see in Boulder — the medical oncologist on Friday (May 8, yesterday) and the radiation oncologist on Monday the 11th. I wondered why the two in Boulder, in the same building, on a much smaller campus, couldn’t get together at the same time, but at least the appointments had been set. I’d be seeing the “second opinion” team first, but I didn’t think it mattered. The point was to see all the doctors as soon as possible, to gather all the information necessary to make a well informed decision about my treatment.

This last week, sometime in the middle of the week, an unexpected call came in. It was the navigator in Boulder. She’d seen my name on her calendar, knew I’d be coming in, and called “just to get acquainted.” We must have chatted for 20 minutes or more, as though we were BFFs with nothing else to do. I don’t remember what all we talked about but at one point she mentioned she listened to people’s breathing to judge how they were feeling. She talked about how hard it is to ask for help when you’re used to being independent and especially when you live alone, and assured me there were innumerable friends who’d been through the same thing (herself included) waiting to help me. I’m sure all new breast cancer patients hear something similar, but it takes on a whole new meaning when you’re the patient. I got so choked up I couldn’t speak and struggled for what seemed forever to regain my composure. And then she said quietly, “Breathe.” And I did. And smiled at her magic. And was able to finish the conversation.

“Be sure to come by my office Friday when you’re here, so we can meet,” she said, and I assured her I would. You don’t pass a friend’s door without saying hi.

As I was hanging up, she added, “I’ve got chocolate!”


13 thoughts on “They’re called navigators; I call them angels

  1. Jim Wheeler Sunday, May 10, 2015 / 9:18 am MDT

    It is heartening indeed to hear that the medical system is operating so smoothly. The ACA puts emphasis on a holistic approach to patient care and you’ve got me wondering if the team approach you’ve encountered might have benefitted from that. I see that Colorado accepted the ACA’s insurance exchange option and your report seems to indicate that they have bought in. Down here in MO, suspicion of government remains high, heaven help us. Good update, PT.

    • PiedType Sunday, May 10, 2015 / 10:08 am MDT

      Suspicion of government is and should remain high. There’s too much ineptitude, too many bureaucrats, too much confusion. Perhaps because of my background and my dad’s affiliation with a university and its teaching hospital, I don’t think of universities as government but rather, scholarly institutions. And being on Medicare, I don’t think much about ACA (but yes, Colorado joined the exchange program). The CU Cancer Center is ranked 15th in the nation by the National Cancer Institute and #1 in Colorado, so I can’t do any better without leaving the state.

      • zenzalei Monday, May 11, 2015 / 11:28 am MDT

        Oh, yes, it’s definitely the ACA at work. ACA emphasizes a team-based, multidisciplinary approach to care. It’s all evidence-based medicine, as the team approach tends to have better outcomes, and the other thing the ACA emphasizes is good outcomes. There is an emphasis on clear communication and everyone being on the same page, because if there are discrepancies and mistakes that lead to poor outcomes, the team is held accountable for that. This goes double for Medicare, where they have reviewers who go over care plans, admittances, hospital returns, etc. If a reviewer determines that an adverse event, complication, or readmittance could have been avoided, the providers don’t get paid. This is a huge simplification of the law, but that’s basically what it boils down to: Better outcomes and cost-effectiveness.

        • PiedType Monday, May 11, 2015 / 12:55 pm MDT

          “Team” does seem to be the name of the game at both CU and in Boulder, with CU doing it a little better. Their dedicated cancer center building houses all the different oncology specialists/physicians, offices, labs, infusion center, ORs, etc. While I’d prefer to be observing the new team approach as a disinterested third party, it’s reassuring to have it in place now that I need it.

          Er, correction: It’s actually a dedicated breast cancer center building. Other cancers are treated elsewhere.

        • zenzalei Monday, May 11, 2015 / 11:03 pm MDT

          I have faith that you are in the best of hands. I have several sources there for various articles, and they have a good rep. Their clinical pharmacists are top-notch, too, if you have questions about how treatment will affect other drugs you might be taking, etc.

        • PiedType Monday, May 11, 2015 / 11:25 pm MDT

          That’s reassuring to hear. I was particularly impressed with the medical oncologist, who really seemed to know his stuff and has some impressive research credentials. I don’t doubt he’ll be working closely with a clinical pharmacist and I might end up seeing the pharmacist more often as we deal with assorted side effects, etc. (Trying not to think too much about that yet.)

  2. philosophermouseofthehedge Monday, May 11, 2015 / 5:07 pm MDT

    Navigators are angels – they know how to get things done, how to get around regulations ( and all the institutions are having to do that now). It’s always a problem getting appointments scheduled conveniently, but at least you are close by all the centers’ players.
    The cutting edge institution centers have been coordinating care and working as a team for years – it has nothing to do with the ACA. The object is to get the patients the best care as efficiently and effectively as possible – has to have close communication with all parties involved. You’re in a good place for treatment. (Have they mentioned dietitians? Depending on med. philosophy, you may be altering what you eat a bit. Healthy is good. Specialized Yoga, bio-fedback or meditation? Breathing is good.)
    This post cheered me up. Chocolate! Great person.

    • PiedType Monday, May 11, 2015 / 5:56 pm MDT

      They’ve mentioned all that and more. Acupuncture. Massage. I forget what all. Trouble is, no matter which place I go, it will be a ±24-mile drive. Not going to do that for a yoga class. Chemo and radiation yes. But that will likely be the end of the long drives.

      • philosophermouseofthehedge Monday, May 11, 2015 / 7:07 pm MDT

        The driving is a problem. There should be something closer to you…hmmm, thinking. Maybe there’s some sort of transport available once a week? Any come-to-you therapy/yoga possible? On the other hand, my sister in law just wanted everyone to toss in food and leave. Silence was healing for her.
        Dogs are a type of yoga…look at their smiles!
        Remember to check to see if your drug plan will cover the first choice drugs of your docs/team – your navigator should be able to advise.
        Here there were issues with my sister-in-law when the one she was on wanted to substitute….the docs sometimes have to write letters to prevent that and say “Fill as written – no generics” and they will still nag you…they do here, every refill…so annoying. Part of my husband’s is “experimental” so they won’t pay even though it seems to be working.
        I hate insurance companies. But big institution medical teams rock.

        • PiedType Monday, May 11, 2015 / 8:19 pm MDT

          I wouldn’t go to a class if it were next door. Solitude is my medicine. Had a long, funny discussion over Mother’s Day dinner with my son and DIL about getting me some big colorful headphones to go with my computer to signal “Leave me alone” when I’m getting chemo. I was telling them how much I hated the thought of having to sit for several hours next to some chatty little old lady, or between two of them, having to endure polite small talk. Ugh! I’d never thought of doing something like that, but the son says he does it all the time at work when he doesn’t want to be bothered (he’s in an “open office”).

          As for the drugs, thanks for the tip. I’ll be on the lookout for substitutions. This is one of those times when you don’t take a chance on generics, no matter what it costs.

        • philosophermouseofthehedge Tuesday, May 12, 2015 / 7:48 am MDT

          My sister-in-law only wanted to be outside on her ranch. Listen to your gut.
          I think the headphones are a great idea….the scene brings up the image of chatty ladies in the beauty salon when I was little and my mom got her hair done…yacky yacky…she complained and tried to go when other people weren’t there …did you ever see those metal machines with all the wires they clipped rollers to when people got permanents? (Really showing age here) Those metal things were scary looking

        • PiedType Tuesday, May 12, 2015 / 8:42 am MDT

          I’ve seen pictures, but not the machines themselves. Closest I got was just the huge metal dryer hoods you sat under — which pretty much precluded conversation unless you yelled.

        • philosophermouseofthehedge Tuesday, May 12, 2015 / 8:58 am MDT

          There used to be one standing threateningly in the corner where my mom went. I swear it snarled and looked mean. Always wondered if Get Smart modeled the Cone of SIlence after beauty shop gadgets..then there’s Marge Simpson’s hair….

"You don’t have to say everything to say something." ~Beth Moore

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