Lucky

We are so lucky, we all say. My mother, my sister, all our friends, all the radiation techs and nurses and neurologists and social workers and clinical psychologists and registered dieticians and cancer clinic receptionists and schedulers. Everyone: “We are so lucky.” Let us count the ways:

She was over 65 when she got this diagnosis and therefore is covered for her treatment and prescriptions by Medicare. We got a Notice Of Charges today in the mail for sixty thousand dollars. Sixty. Thousand. Dollars. I cannot imagine actually having to pay a medical bill that size—and that’s just for, like, a month of treatment. Had this shown up a year earlier, I would have to more than imagine it—medical expenses that size would change every single aspect, every single molecule of my family’s future. Medicare is the beginning and the end of the reasons we are lucky, that’s it, that’s all.

In between the beginning and the end, though, is the middle, and the start of the middle is that Mom has had a relationship with her primary care person for many years, and that primary care person not only had the smarts to see that when Mom went in just over twelve weeks ago complaining of not being able to remember stuff like she used to, things were very very much not okay and it wasn’t just a case of getting a little older, but also had the influence to schedule her with a specialist the next day. She could have, as many people do, have languished in referral limbo for crucial weeks or months.

When she couldn’t drive all of a sudden, like, one day to the next, and yet had to go to multiple appointments every day, my aunt just happened to be visiting from Oregon, as she does every year, and was able to stay for an extra couple of weeks. Another aunt and my sister were able to fill in during the two weeks between my getting the news while I was in a work meeting in Wellington and my rolling up late at night on on the island after thirty-six hours of travel to hear the diagnosis and to start making the plans.

The plans, yes, the plans. My long-ago master’s in social work is finally coming in handy and I have no problem calling the oncologist’s office every hour on the hour if I don’t understand something, or think something’s not quite right, or have something to report. I have no problem flicking through the My Mom Has Cancer notebook and asking for more clarification on a certain point. I know what they’re talking about when they ask about delirium vs. disorientation; I can ask about the contraindications and the concomitants and the comorbidities. My race, class, and education privilege insulates me from being dismissed or ignored by the professionals and allows me not only to expect the highest level of care for Mom, but to demand it if need be: why yes, I would love to meet with the oncology department manager, and may I have your card as well to follow up? Thanks ever so much.

Oh, and? Most of the time I happen to live in a country and to work for an organization with generally liberal leave policies, so I was able to just knock on my boss’s door the Monday after I got the news and say I needed six weeks off. “I’m leaving in two weeks,” I said, and that was that. When I arrived and it turned out I needed seven weeks? No problem. “Let us know if you need eight,” they said. Cancer care has been my full time job since the 5th of March, and I’m still able to go back to my actual full time job once I get on the plane on Wednesday. I haven’t had to go through the extensive Family Leave Medical Act paperwork like my sister, who counts herself lucky to be able to receive such benefits. Her husband has no such access to that sort of leave; he’s been lucky, after two years at his job, to get a week off to come down and help with the move in addition to doing all the baby care while my sister is down here by herself this week. I’ve been able to drive to the appointments, to call the doctors, to sign the forms, to dispense the meds. I’ve been able to just be here for Mom, even for just a short time, without worrying about losing my job. (And even if I did lose my job, heaven forbid, because of my permanent residency and universal health care in New Zealand, I would still be able to go to the doctor if I had to).

Not everyone can say that. Most people can’t say that. For more people in the richest nation on earth than I feel comfortable thinking about, there is no insurance, there is no family—-or there is insurance, but it doesn’t cover everything. There is family, but they can’t leave their jobs for hours a day, or they don’t speak enough English to navigate the system, or they don’t have reliable transportation. They are eighty-two years old trying to care for their eighty-five year old spouse, or their marriage to their spouse isn’t recognized in the state they live and so they cannot share records or benefits or a hospital room. The medical staff won’t answer their questions, or will alter the quality of their care based on assumptions about their immigrant status or their ability to understand or their ability to pay. There isn’t enough money for a cancer care diet, or a quiet room to sleep in, or a safe place to exercise. The hospital is a three or four or five hour round trip. There maybe isn’t any trust that the doctors will take them seriously and will want to help.

We are lucky, and so have every luxury: friends and family to help with everything from sending flowers to selling the house. We have a health proxy document and a living will. We are able to go through two huge bottles of expensive protein smoothie a week and to rent a car when ours breaks down and to pick up eggplant parm at the Whole Foods on South Beach just because we feel like it. We are able to show up ten minutes early and sit quietly and know the radiation techs by name; they respond by telling Mom that she is the perfect patient and that we are so, so, so lucky.

Until this year ‘health equity’ and ‘social determinants of health’ were phrases I typed a lot at work; concepts I discussed in an academic, removed way. I have never been sick other than a broken collarbone and the occasional bout with the flu; I have never spent a night in the hospital in my life. Severe illness or chronic disease used to be something that happened to my clients, and the health system was a sort of a complicated puzzle to be solved on their behalf. Now I understand a bit more—just a tiny bit–what the reality of our health care system in this country is like, from the patients’ and the families’ and the caregivers’ perspectives. It is rough, is what it is.

Because even with all the luxuries and privileges we enjoy, even with the support Mom is able to have, even with all the top-shelf care—-this is the hardest thing I have ever done and I’m not even talking about what Mom herself has gone through, in comparison to which my own struggles pale significantly. Me personally, I am a wreck, physically and otherwise: I don’t sleep, my hair seems to be falling out in sympathy with hers, I’ve got what feel like fifteen canker sores and four limbs worth of unexplained bruises. After relatively few weeks of being perfectly organized and on top of things, of checking off boxes and leaving perfectly crafted voicemails, these last couple of days I can’t get it together to find the bank paperwork or to call the yoga teacher or to not let my tea get cold in front of me as I stare off into space. The entire extent of my conversation, if you try to talk to me, is like “HI. CANCER. OKAY BYE I HAVE STUFF TO DO,” and I don’t know what going home to Welly is going to be like, I don’t know if I’m ever going to be able to think or talk about anything else ever again.

But we’re lucky, we’re lucky, we’re so so so so lucky. I see that. I know that. I count my blessings every day. We’re lucky, in every conceivable way. I will never stop being grateful for that luck, and I will never stop thinking that luck should have nothing to do with any of this, for anyone.

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10 comments

  1. So much truth.
    xo

  2. I wish that the others with worse luck were as “lucky” as you, but as long as I’m wishing, I wish none of you had to endure any of this shit. Fuuuuuck cancer (and sickness and fragile old age, too).

  3. That was beautifully written, and wrenching too. I wish you and your mom all the best. As unlucky as this diagnosis is, you’re very right about all the things you are both lucky for – and add in the fact that she’s so lucky to have a daughter taking such wonderful care of her.

  4. Just remember that now it’s *your* turn: when you get back to Wellington, try to let your friends help take care of you for a bit.

    Wish I was there to help when you come back.

  5. First, and most importantly, I’m very sorry that your family is going through this. I’m sending strength your way (for as a much as that’s worth from an Internet stranger). Second, this was one of the most profound accounts of health care in the U.S. that I’ve ever read. Thank you for taking the time to write it.

  6. YES.

    I am so sorry about your mom.

  7. Chiara,
    My mom tuned me into your blog. Your writing is so evocative, expressive, and inspiring. I’m hoping you know how much you’ve given your mom and people around you.
    Ilana

  8. Beautifully written, and I am glad for you and your Mum that you are able to be as lucky as you can be in this situation.

    I have no idea why people in politics here in the US are stonewalling so that other people who aren’t so lucky can have affordable healthcare. Just no clue how they can justify it to themselves and sleep at night.

  9. My experience of healthcare here is so…complicated. Growing up in a country with universal medical care and them coming to this? It’s mind boggling.

    This is such an excellent post. Thank you.

  10. Thank you for this post, Chiara. I want to re-post it on billboards and subways and anywhere people might pay attention.

    My feelings about our healthcare system range between gratefulness (for excellent doctors who have helped me throughout my life) to rage (for a system that so often fails patients and doctors both)… so for now, I’m thankful that you and your mom have been as “lucky” as you have. Sending strength and love, although I wish most of all that you didn’t have to go through any of this crap.