When Cancer Strikes, Good Insurance Means Everything — And Everyone Should Have It

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My wife, Loren, was diagnosed with metastatic breast cancer late last year. She completed full-brain radiation in October and six rounds of chemotherapy after that. She is now on immunotherapy, once every three weeks for the rest of her life.

None of this is cheap, of course. But with good health insurance, it’s manageable, at least for now. We won’t go bankrupt, and we won’t lose our home.

Loren had to quit her job this winter and go onto permanent disability. With California State Disability Insurance this year, Social Security Disability, and, most important of all, a Long-Term Disability insurance policy from her employer, Loren will receive two thirds of her previous income until she reaches full retirement age.

That’s a $30,000 pay cut. Add to that nearly $6,000 a year in out-of-pocket medical expenses, and, as a family, we’re down $36,000 a year, about a quarter of our pre-cancer income. We can still pay the mortgage and our other bills – thank goodness – but only because we have good health insurance.

Loren’s job offered health insurance through UMR. Loren opted for a high-deductible plan with a generous Health Savings Account because, as we thought at the time, we’ll only be paying for routine visits and her employer’s HSA contribution will pretty much cover it.

Fortunately, Loren’s healthcare policy had a $3,000 out-of-pocket yearly maximum. O’Connor Hospital sent UMR a bill for $64,000 for Loren’s emergency room visit and initial hospitalization. Stanford Health Care sent bills totaling $746,000. UMR paid a total of $332,350 last year and charged us exactly $3,002.05.

January 1st, Loren moved on to my health insurance with Anthem Blue Cross, with what can only be called the mother of all pre-existing conditions. (I can only imagine the celebration at UMR when they heard the good news.) Stanford Health Care sent Anthem bills for more than $425,000 in January and February for chemotherapy and brain and spine MRIs. Anthem charged us $5,670.

Stanford has sent them many bills since then, including ones for a pricey PET scan and another set of MRIs. Anthem and Stanford bicker with each other (I can see their disagreements on the Explanations of Benefits), but neither one has ever sent us a big, scary bill.

I don’t care how we get there. I don’t care if it’s repeal and replace, revise and resubmit, or leave that thing alone. And I don’t care if we call it Obamacare, Trumpcare, Ryancare, or McConnellcare. But everyone in a country as wealthy and blessed as ours deserves to have what we have: good health insurance and the head space to spend every moment as best we can, together and happy, not constantly worrying about medical bills.

Because what really matters in this life is time. Time together on a daily basis to enjoy each other’s company. Time together on weekends and other days when Loren is feeling good to get outside and enjoy the sunshine. Time to eat good food and drink good wine, preferably at the vineyard. Time to enjoy good times with good friends.

Serious illness comes with so many worries, most of them overwhelming. Paying for treatment should not be one of them.

Originally published July 24, 2017, in the San Jose Mercury News.

Copyright 2017.  All rights reserved.
#cancer #breastcancer #healthcare #healthinsurance #obamacare

Progression

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Progression is not a good thing in cancer treatment.  Progression means the cancer has made progress, not we have made progress against the cancer.

That’s the news my wife, Loren, got from her last scans.  The scans show progression, which means the cancer has flared up again in spots.  Not much progression, but enough for the doctors to change tactics.

Loren’s infusion, once ever three weeks, now includes a targeted chemo drug attached to an immunotherapy drug.  The targeted chemo drug is stronger, with more side effects than the immunotherapy drugs, but, hopefully, it will prove to be effective for a while.

I say a while because metastatic cancer is like a fire we can’t put out.  We can knock it down, but there will always be embers — until we find a cure — waiting for a breeze to flare up again.

Copyright 2017.  All rights reserved.
#cancer #breastcancer #chemotherapy

This, Too, Is Our Life With Cancer

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Sitting by the fire in Santa Barbara.

Our life with cancer is not all doctor’s appointments and test results. It’s silly jokes and morning coffee, long conversations and quiet time, slow bike rides and long walks downtown for beer. It’s day trips to the City and longer trips to the mountains and down south to see family and friends.

I now want to write “it’s good times and bad” – for the parallel structure, of course – but I can’t, because it’s mostly good. The bad part of our lives is cancer. Other than that, our life is good.

It’s laughing with friends in Carmel Valley.

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Carmel Valley selfie, using my built-in selfie stick.

It’s wine tasting in the Sierra Foothills.

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Sierra Foothills wine swirling.

And it’s fun runs on the beach after one too many cocktails.

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Running near Half Moon Bay.

I can’t remember the last time we had an argument or disagreed on much of anything. We were in a pretty good place when Loren got sick, and we’re still there today. Loren thinks we should maybe buy a house in a nearby neighborhood, about ten blocks from where we live now. She says it’s an up and coming area, but I’m not so sure. I think it’s still a little sketchy.

Loren retired from her job and is working on projects of her own. She is investing in the stock market and sewing seat cushion covers on the side. She goes to yoga at least three times a week and finds time to play with me every single day.

Our life with cancer is just that. Life. With cancer. With a renewed appreciation for life.

Copyright 2017. All rights reserved.
#cancer #breastcancer #lifewithcancer

Good News

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The good news came in response to a non-urgent medical question.

“Good news,” Loren’s oncologist wrote. “I looked at your PET scan results. Everything looks a lot better. Some of the lung nodules have completely resolved, and there is no sign of abnormal radioactivity in the mediastinal and hilar lymph nodes, adrenal gland, and bones.”

In other words, there’s still cancer in Loren’s body, but all the tumors are shrinking. All the indicators are heading in the right direction.

“I’m very happy for you!” the oncologist added.

We’re very happy, too.

Six rounds of chemotherapy did the trick – they attacked all the fast-growing cells in Loren’s body and knocked her cancer down. Six rounds of chemotherapy also knocked Loren down. She lost all of her hair and most of her taste buds. And she slowed down considerably, with barely enough energy to make it through some days.

But if life with cancer were a boxing match, the judges just gave this round to Loren. Most of the large tumors have shrunk by more than half, the oncologist explained on the phone, later that day, and many of the small tumors have disappeared altogether. The tumors will shrink even more, she said, as immunotherapy targets her disease.

There is no cure for cancer, at least not yet. So we all know how this fight will end. The question is: How many rounds will we get, and how hard will cancer punch later in the fight?

Loren’s oncologist tells us that before immunotherapy, Loren might have lived a year, maybe two. But now, she has patients who live on Herceptin and Perjeta for years, ever since this combination of drugs became the standard of care for Loren’s type of cancer back in 2012.

“Nobody knows,” she said.

We certainly don’t.

And we are doing our best not to care. Because our life with cancer is like every other life – sometimes better, sometimes worse – and, at least for now, it’s good. It’s life. With cancer.

And we hope it stays that way for a long time to come.

Copyright 2017. All rights reserved.
#cancer #breastcancer #chemotherapy #immunotherapy

How Am I Doing?

My wife, Loren, is battling metastatic breast cancer. And almost every conversation I have these days – at work and with friends, at the bar and on the phone – begins with the same question: How is Loren doing?

The answer is, she’s doing okay. She, fortunately, does not have any nausea. Maybe a little heartburn and bone pain, along with a great deal of fatigue, but no nausea. She is maintaining her weight and we are, obviously, hoping for the best.

Most people nod, say they’re happy to hear it, and leave it at that. Some ask for details, and I’m happy to go into the minutiae of treatment and tell them about the good days and the bad, the patterns within the data (we keep track of Loren’s symptoms in a small notebook – how she’s feeling listed on the left side of the page, medications and other countermeasures on the right), and our mostly successful efforts to anticipate and counteract the side effects.

Good friends and family, however, ask the more difficult question: How are you doing?

I’m doing okay, I guess, about as well as can be expected. I’m not overwhelmed anymore – “Just whelmed,” I like to say – and deep down, I have the sense that I’ll make it, no matter what happens. I’m not losing weight, I’m all caught up at work, and I’m not worried about, or anticipating, what might happen next.

But I no longer have far horizons, or at least those I care to look toward, because none of them include Loren anymore. I live up close, in the moment, enjoying the times when Loren has energy and getting things done when she sleeps. It’s a crash course in mindfulness, one that gurus everywhere would be proud of.

But one that’s surprisingly difficult. We weren’t built to always live in the now — we were made to reminisce and daydream as well. And Loren and I do remember our many years together, both the good and the bad, but we don’t look very far ahead anymore. Not much past next summer.

Not because we think she is going to die before then. The statistics look good and she seems to be responding well to her treatment. But nothing is known, nothing is certain, until she gets her next scans: one for the brain in January and one for the rest of her body a month or two after that.

If everything looks good, Loren will switch over to maintenance chemotherapy, which won’t include taxotere, the nastiest one of her chemo drugs. Her hair will grow back, for the most part, and her taste buds will return (with a taste for cheaper wine, we hope). Life will return to normal – or something resembling normal — but every three months or so the docs will take another look and let us know if everything is going to change.

I know. I’m back to telling you about Loren and how she’s doing. Because it’s easier than telling you about myself.

I’m okay, as good as can be expected. And you? How are you doing?

Cancer Changes Things

Plenty of people will tell you that serious illness gives you a new perspective on life. What they don’t tell you, however, is that new perspective is kind of annoying, especially to your coworkers and friends.

I’ve learned this lesson ever since my wife, Loren, was diagnosed late last year with metastatic breast cancer. After the initial shock and disbelief, we settled into a routine of constant doctor’s visits and MRI’s, infusions and injections and other frightening and expensive scans with acronyms I struggle to keep straight and understand.

We also developed a new attitude, one that reminds us that most things in life, really, aren’t all that important. What really matters is time. Time together on a daily basis to enjoy each other’s company. Time together on weekends and other days when Loren is feeling good to enjoy the things we, well, enjoy. Time to eat good food and drink good wine, preferably at the vineyard. Time to enjoy good times with good friends. And sunshine. Plenty of sunshine.

Beyond that, it’s all just details, really.

I’ve never been one who lives to work. I work for pay, like most of us do, because I wasn’t born into money and my parents didn’t set me up with a fancy trust fund.

But my attitude toward work is surprisingly pleasant and upbeat these days, so much so that one of my colleagues recently called me Professor Pollyanna — right after I said, “Sure, let’s give it a shot” when somebody suggested we try something new.

Just the other day, I was chatting with two other colleagues, gearing up for a good old-fashioned complaint session. (I’m very good at complaining about my job.) But then they asked me about Loren, and I told them she is doing OK, handling the chemo well and looking forward to moving onto immunotherapy.

“I don’t know how you cope with a sick wife and a stressful job,” one of them said.

“Yeah,” the other one said, “everything is so crazy and difficult around here.”

“Work’s not stressful,” I said. “It’s actually kind of a pleasant distraction.”

My colleagues looked betrayed. I paused and tried to think of something to say.

“Cancer changes things,” I said. “Sometimes in unexpected ways.”

Copyright 2017. All rights reserved.

Chemotherapy, One, Two, Three

There’s a rhythm to chemotherapy, a simple one, two, three. Week one is bad, week two is better, and week three is good, almost normal, almost like life before cancer and chemotherapy. One treatment every three weeks.

Week one doesn’t start bad, but then it slowly, inevitably, gets worse. My wife, Loren, has chemotherapy on Tuesdays at 9:00 AM. Her first stop is the lab to draw blood, then a short wait and a quick chat with an oncology nurse about her what they see. Loren is running a bit anemic, but everything else looks fine, so they call down to the pharmacy and give them the go-ahead.

Loren’s chemo is administered slowly over four or five hours in a surprisingly cheerful infusion center at the Stanford Cancer Center South Bay in Los Gatos. Each station is a semi-private space, equipped with a TV and comfortable reclining chair, like a more spacious first class pod on an overseas flight, but without the on-demand minibar.

The cocktails are mixed in the lab and specially delivered in three separate IV bags. The first bag contains Herceptin, and it goes down easy — they all go down easy — because Loren has a Mediport in her upper chest, a rubber valve implanted just under the skin that provides a direct line into her superior vena cava. The first IV drains in about half an hour and is followed by Perjeta and then Taxotere, which comes with the most side effects.

Loren can walk around during her infusion, eat lunch, read a book, watch TV, or chat with friends (there’s a chair for visitors tucked into one corner of the pod). When she’s done she’s free to go, and she walks out to the car a little more slowly than when she arrived.

That’s because the first, almost immediate side effect is fatigue. We keep track of Loren’s symptoms in a small notebook: how she’s feeling listed on the left side of the page, medications and other countermeasures on the right. Chemotherapy day is marked with a capital “C,” and each day after that earns a “+1.” Fatigue is noted on Chemo day, and C+1 is more of the same. C+2 adds heartburn and a little bit of intestinal distress, which increases, but not by much, on C+3.

Loren is fortunate that she has almost no nausea, but she has significant bone pain. She receives a shot of Neulasta on C+1, which hyper-stimulates the production of white blood cells in the bones. All this extra effort makes her bones ache, beginning on C+3 in her hands and feet, then moving inward to larger joints on C+4 and finally settling into a deep, constant pelvic ache on C+5.

C+5 and 6 are the worst, and Loren spends those days as best she can, in and out of bed for regular naps. The doctors want her to manage the pain with Tylenol, which she does okay, but those days she’s tired and in minor, but constant, pain.

C+7 is the last day we track in this precise, abbreviated way, and by week two Loren is feeling better. Her pain disappears and her energy returns, though she remains immunocompromised through C+10. We avoid large crowds, but we get out and play, and by week three our life seems almost normal, like life before chemotherapy, and we schedule in as much as possible before the cycle begins again.

A couple years back, when we lived in small-town Maryland, I saw a piece on the local news about a woman whose baby was born with severe birth defects. Doctors said her daughter didn’t have long to live — maybe a week, maybe two.

Instead of keeping her baby in the hospital, the mother brought her home, so she could love her and care for her and hold her constantly in her arms. The baby died three weeks later, and when a reporter asked why she decided to bring her home, the woman smiled.

“Because that’s the life we’ve been given,” she said. “I want to make it the best I can.”

Every day, Loren and I try to do the same.

Copyright 2017. All rights reserved.