Cancer pros want you to bring two things to every important appointment: A notebook and an advocate.
No problem, my husband and I thought. We are reporters. We ask lots of questions. We carry notebooks the way trees carry leaves.
The notebook buddy plan worked all through the scary introduction, through the lumpectomy, through the installation of the power port for chemotherapy drugs. We had no idea that all that was the easy part.
MultiCare did. The cancer treatment team knew we were about to hit a tornado of info. Cytoxan, adriamycin, neulasta and taxol, ondansetron and dexamethasone were about to bust into our vocabulary, along with their trade names – because remembering one name per drug would just be too easy. The lingering regret about not mastering the metric system would become acute. There would be appointments beyond appointments. And don’t even start on the clinical trial options.
Our treatment team knew we’d need help – that everybody needs help with this, and assigned us a nurse navigator. Calm, considerate, resourceful, non-judgmental, Robin manages to anticipate my mistakes, and steer me from rash to reasoned actions. What to do about a temperature? Robin knows. Where to find a good wig? Robin has the list. When to call Robin? Any time. Any time at all.
Before I met Robin, before I knew enough to fear the tornado, I’d done my prep reading. I’d studied the coverage through Medicare and my Medicare Advantage plan insurance, and submitted to utter gratitude that I got this diagnosis a week after I went on Medicare.
I got a binder to save every bill, prescription, report, info packet and schedule. Two months into this, the second binder is half full.
My PET scan technician, the one who pinpointed the nest of invader cells behind my breastbone, gave me two LIVESTRONG workbooks.
“Lance Armstrong? Really?” I thought after I thanked her kindly.
The last time I’d run into a reference to the lying, cheating cyclist was in a bike shop on Kauai, where they had his poster at floor level, for convenient kicking. I could not imagine his cancer foundation had anything to say that I needed to read.
Wrong, as usual. On a low day after surgery, I pulled the books out and read about the broader experience of cancer – about research, about cancers with improved odds because of it, and cancers with not much change for the better. The books told of young people facing infertility, and resources for families facing ruinous bills. They listed support services and gave contact info. They provided work sheets on everything from side effects to expenses. They explained how to make a will, and what to consider in a living will.
It was good reading, and a decent invitation to admit that there’s a dark layer under all the confidence, technology and support that are carrying me through this. It’s okay, the book said, to falter once in a while.
What a relief, because that’s about the time I lost it for a day.
I’m lucky enough to have a cancer with research possibilities – a cancer that can help some other woman down the line. I agreed to be a candidate for a clinical trial then learned that, if that did not work, I might fit into another study.
This was great news. I’m beating this cancer because others, mostly women, offered their bodies to researchers as living laboratories. It would be a privilege to do the same. Sign me up, I said.
Then, wham. The tornado. The mean woman on the bicycle, the barky black dog and the rough landing in ChemoInfoWorld.
I let the information on the studies overwhelm me. I panicked over delaying chemotherapy for a week to start one study. Instead of calling Robin, I melted like a bad witch under a house and begged to start chemo right away.
It was not pretty, or dignified or altruistic, but it’s what I did while under the influence of the infonado, and a crack in my optimism. On the plus side, I’m a go for that second study.
I also recognize my weakness in the face of too much information. I weighed it all – all the notebooks and resource info and insurance documents and bills – and it came in at 12 pounds, six ounces. It’s a terrific, and necessary, reference, but daunting.
And that is why, when I go in for chemotherapy, I take advantage of one of the finest advances in medical technology: The nurses.
There are big spaces, as that chemical warfare drips through my port that I just want to read. And there are smaller spaces when the nurse sits with me during a shorter drip.
“How are you doing?” she’ll ask. “Any problems? Any questions?”
I have my notebook, with those questions. And, in the nurse, and the oncology support team with her, I have my advocate.