Good evening, and welcome to Monday Night Cancer Club. Have you been here before? If this is your first visit with MNCC, welcome and please be comfortable.
If you've had or have cancer, or someone you care about has been diagnosed, most of us have been here:
After your followup appointment; during which you took meticulous notes, and tried to concentrate on the voluminous information your oncologist discussed with you? Your notes are illegible. Your hands were shaky. I understand. You can't remember exactly what the doctor said about a particular treatment being pro or con for you. You're exhausted. You're overwhelmed. Even if you were feeling tip-top, this is just too much information to think through . . . . and your memories of the conversation aren't any too reliable.
After you've had some therapy, or decided not to, you have a weird pain or a quirky symptom, the kind of thing you wouldn't think twice about under normal circumstances. That said, normal circumstances are squarely in the past tense for you and I. We can't slap a Dora band-aid on a little cut that simply will not stop bleeding, or allow a cough to linger on and on while our minds work overtime with thoughts of "oh my God, it's nothing . . . . but I'm a shivering wreck. Will they think I'm crazy if I go in for a check-up and I just have a cold?"
You don't understand. And that ain't on you, amiga or amigo. You are a blameless victim of (among other things) both too much information and too little information.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
If you feel pretty much back to usual, and are doing what you want to be doing, and feel like you're at an "ECOG zero" performance status, then felicidades to you.
Let me just ask: Are you going to pretend you didn't read that article about a new vaccine that claims Promising New Data in totally eradicating your cancer type? You don't want to borrow trouble. You've had quite enough. Yes, we know new drugs for cancer are being made available (yet more Promising New Data) all the time. They probably don't help, and they certainly couldn't help you, right?
Even if you can forget the possibility of that vaccine trial, or the new drug, and I'll bet you can't, asking about it seems like inviting recurrent disease, no? So you don't ask. Or you promise yourself you will, absolutely . . . but not today. Hope springs eternal and all that jazz, but none of us wants to court problems or give them the power of saying their names out loud. You don't want your doctor, who seems a decent if overbooked dude, to laugh at you or smirk at your ignorance (which is all in your mind, I promise . . . there are no dumb questions).
Maybe what you need is an intermediary. A patient care advocate or navigator who will act as The Fixer and get you some straight answers that he or she will explain to you as many times as you want, and even in a different language if you want. The one thing your advocate will never do? He or she won't let you slip through the cracks of a totally frustrating, overwhelming system that requires you to be on hold with a recorded voice for hours on end and won't summon a human being to the telephone when you need an answer quickly.
So What Is It That A Patient Care Navigator Does?
Navigators assist patients with the hurdles throughout a cancer diagnosis such as:The navigator is a blessing, te lo juro. You may not understand the science of your counts, but he or she does, and will customize the answer to your level of understanding and comfort, discussed at the first visit, often when you're an inpatient. You can tell your navigator that you want every detail or just to give you the skinny and let you know if and when you need to worry (and the ridiculous over-abundance of information would be a burden, honestly, that a totally healthy individual would have great difficulty shouldering 24/7/365). Having an advocate or navigator means you don't have to do this alone.
• Explaining the nature of the specific diagnosis and treatment plan;
• Providing a survivorship organizer and educational materials;
• Discussing available clinical trials;
• Ensuring the case has a multidisciplinary, team-based approach;
• Assisting in locating additional community resources.
The The Center to Reduce Cancer Health Disparities has become a huge success story for The National Cancer Institute. This is their description of Navigators:
Patient Navigators are trained, culturally sensitive health care workers who provide support and guidance throughout the cancer care continuum. They help people "navigate" through the maze of doctors' offices, clinics, hospitals, outpatient centers, insurance and payment systems, patient-support organizations, and other components of the health care system.Sounds good? YES. Because it is good. These marvelous individuals are at your service; specifically:
Services are designed to support timely delivery of quality standard cancer care and ensure that patients, survivors, and families are satisfied with their encounters with the cancer care system. Patient Navigator activities designed to achieve these outcomes include:
- Coordinating appointments with providers to ensure timely delivery of diagnostic and treatment services.
- Maintaining communication with patients, survivors, families, and the health care providers to monitor patient satisfaction with the cancer care experience.
- Ensuring that appropriate medical records are available at scheduled appointments.
- Arranging language translation or interpretation services.
- Facilitating financial support and helping with paperwork.
- Arranging transportation and/or child/elder care.
- Facilitating linkages to follow-up services.
(CRCHD) is central to efforts to reduce the unequal burden of cancer in our society and train the next generation of competitive researchers in cancer and cancer health disparities research.Saint Monica, YTBC (Yet to be Canonized)
My navigator is an R.N. who's in training for a master's degree in nursing. I can't tell you I liked her on short notice. I wondered what the bloody hell this vivacious little bundle of youth, energy and enthusiasm thought she could possibly do except perch on my very last nerve in between touching up her French manicures (perfect) and accessorizing (ditto). She was way too cool for my comfort. I didn't want to talk with her. We had nothing in common.
Nurse Monica had obviously never been sick for a day in her life. The radiant glow of her skin (so not fair . . . . her GinZing somehow worked harder than mine) and her perpetual smiling (what a showoff . . . and was that a smirk?) . . . Oh, how she made me seethe. But then a funny thing happened on the way to the Forum of Lost Causes.
As it happened, Nurse Monica was no fool. She knew I was a reborn cynic. She also knew, without me spelling it out in detail, that every time I had to get a transfusion for PTLD (post-transplant lymphoproliferative disorder), time slowed to a crawl because we live in Florida, and faxing or mailing 15 or 20 pounds of paper charts from UTMB in Houston isn't an easy or immediate process. It used to be a week in the hospital, at minimum. An expensive "time out" I didn't want, and being uninsured, couldn't afford.
Being transfusion-dependent is not my idea of fun, but the wrinkle of technology versus arcane charts with handwritten reports is particularly vexing. Imagine you need a few units of platelets and packed cells (again) and have to meet young residents and even staff oncologists who have never seen labs like yours. They freak out, run around with their hair on fire, and order repeat tests and lots more lab tests. Before you can get a word in, they have you in the standard issue hospital gown with a wristband and are conferring loudly in unnecessary tones of doom and gloom. Not just once, but sometimes once a month.
(An inveterate Breaking Bad fan, I longed for a street dealer. "Hook me up, yo . . . " and Jesse or Skinny Pete would circumvent MFP, in my dreams.)
You've probably been here before . . . nobody listens to a single word you say, because they're totally focused on numbers. "This has got to be a lab error. Was that a citrated platelet count? What's her absolute? I'm positive it's lab error. Did we get a peripheral blood smear sent? Call the lab and get PCR with that, stat. Who's the on-call hematologist?" Stat this, stat that. They were too busy talking among themselves to listen to my Uncommonly Good Sense (the kind you get from BTDT).
Eventually, my Aunt Teresa, a retired R.N., would show up and explain (as she has so many, many times): "This is chronic for her. She needs is an ESA (erythrocyte-stimulating agent), some irradiated red cells, and platelets. She'll be fine after that." A few esteemed medical geniuses have looked askance at my auntie Tree, but she's quick to add: "Have you ever seen labs like hers? She's the last from the Ravandi arsenic trial in 2006."
Do I need to tell you that I love my aunt? You already knew? She's my best, most reliable advocate. She's also the mother I didn't have after my mom died when I was very young. I don't like for her to have to stop her world and swoop in to advocate for me time after time, once with tinfoil on her head (she was in the hair salon, getting highlights, and ran out with her foil and her cape still on).
My navigator, the annoyingly cheerful Nurse Monica fixed this dilemma without my asking. I wouldn't have known what to ask for. Monica had told me to email her or call if I needed anything. I did not know I needed this or that it was even possible, but one fine day, she presented me with a tiny flash drive, loaded with 32 GB of my medical records. And life has been a whole lot easier ever since.
Ever since, Nurse Monica has been the total awesome around these parts. A facilitator gives you a way to be level on the playing field, so to speak. That's what navigators do. I can't bake enough cookies for Monica, or express how entirely grateful I am because she didn't just buy me a zip drive. She actually changed life as I knew it and made it so much easier. It took her weeks to cull the important stuff from my old paper charts and scan it to this tiny little password-protected external drive.
Can You Get A Navigator, Too?
In all likelihood, yes, you can, especially if you live near a teaching hospital or university, or better yet, a cancer treatment center. The best place to start might be asking your oncologist. If you don't feel comfortable doing so, here's a national map of oncology navigators. If you can get a referral from your surgeon or oncologist, that's great. If you can't, don't despair. Here are bunches of resources for different cancers, different foundations, different locations. (anatomic and geographic) from National Coalition of Oncology Nurse Navigators.
And how much will all this cost you? Zero, zip, nada . . . these are students, and they can't and won't take a penny from you. If you don't get a student, although I have yet to hear of any navigator charging a patient, your healthcare provider will have a provision under preventive health care, and you know what?
Thanks to the (PDF) Affordable Care Act, patient care advocates and navigators are considered "standard of care," and with pre-existing conditions in the past, by no later than 2014 (and this is the law) advocates/navigators are a covered expense your insurance carrier must comply with. The students don't charge you a penny. They're getting credits for "clinical" time when they're with patients.
Much more information is available in an absolutely stellar diary by THirt, a family care doctor and Daily Kos diarist: A little known, but potentially fantastic provision of the Affordable Care Act:
Anyway, the Care Coordinator can help reach out to people who might need help paying for meds and see what assistance programs might help someone.You can do this alone, if you choose to. All I'm saying is this: It's not easy. (Even if you're a Type A hyperactive busy-bee like me, it's very difficult to ask for help when you need it.) You don't have to do it all alone, unless that's what feels right for you.
She can help someone who was recently in the hospital understand their new medication regimen and help set up their follow up. If someone doesn't go for the colonoscopy or mammogram that we ordered, she can call them and find out why and/or encourage them to go (and maybe mention that preventative care is covered 100% now!).
She can review their chart ahead of time and put in a reminder for the doctor that the patient is due for a pneumonia vaccine or a shingles vaccine. This is all part of the team-based approach to care which is helping to improve patient outcomes.
Thank you for reading, and take good care of you (yes, you - the person, the patient, the human being who truly deserves love and reverence and care).